Today my appointment was with a nurse named Betty. We spoke about my health history briefly and she asked me what I like to do with my time. I told her I blog and am a part of a support group online, that I want to write a book, that I exercise regularly after starting the Gabapentin and that it took a very long time to get to a place of peace and positivity about my health. She said by reading my records it seems like I have come a long way (which begs me to wonder what the heck is written in those records?!) and that I am very positive for everything I go through. Writing that out makes me want to cry… Weep actually… In complete gratitude.
I don’t always feel strong and I have not always felt brave or positive or able to hold on to hope. Somehow I got here though. I told her it feels like it was very dark for a long time, and that once I started to face the reality of my sickness, I started to process it and come alive again. That it feels like one day I woke up and I was me again, but that it actually took a lot of tears and anger and depression and hitting emotional and physical rock bottom to get here.
At the end she hugged me and told me I made her day. That seeing my progress and my positivity made her so happy and that she was so pleased to meet me.
I feel flushed as I type that. Who am I? Just a woman. A woman with Fibromyalgia who definitely has bad days, who loses my cool at times (though hardly ever anymore which is a HUGE victory! Praise God!), who cries, who struggles, who complains.
I am just me. I don’t see myself as this brave person. Strong? Oh, yes. In life we have to be. But Fibromyalgia didn’t make me strong... it made me stronger than ever. My whole lifetime thus far and all I have been through has made me tough as nails. Loving those kids, learning from them, watching Simmy lose her mom and then her dad, raising Mylie, watching my family and friends preservere through their own trials… letting in all of that light and laughter and love… That is what makes me strong, what makes my whole life brilliant.
My God, who is capable and generous and all knowing... He could heal me right this second but oh! How He knew I needed to be humbled. Still need to be humbled continually! I needed Fibromyalgia to expand my heart, to widen my vision, to rebirth the dreams in my heart and to keep walking into my destiny.
It’s flattering to be complimented. I would be a liar if I said that was not true. It makes me feel good in my flesh, but more then anything it makes me so grateful.
Because Fibromyalgia IS hard and life can be hard, but somehow, some blessed, beautiful somehow… I have made it through the pitch black darkness and I am still standing here.
Thank you, my loving, brilliant God. For knowing my heart. For allowing me this sickness and the brittle, harsh season that came with it, so that I would learn… REALLY learn, that all I need IS you. Thank you for the friends who have supported me, even from afar. Thank you for prayer and the power behind words uttered in the secret places of a heart. Thank you for my chaotic, ever ready family. Thank you for blankets and pillows and heaters and books and Fibro sisters. Thank you for showing me beauty through extreme pain.
Thank you for showing me positivity.
I am so lucky and I cannot believe that this gets to be my life.
In good times I am blessed beyond measure. In bad times I am blessed even more. You break me down, shake me, get all that gunk out into the open. You perform open heart surgery on me everyday as I struggle with the weight of my own flesh.
I am in awe.
Thank you, thank you, thank you.
This life imperfect, fraught with trial and sickness… It is a beautiful mess and it’s all mine!
You let me hear the laughter of the child I love over the phone, you show me grace and maturity and depth in Simonnie, you let me witness and marvel at the women Maddison, April, and Antonia are becoming. You give me such marvelous friends and family and influences in everything, every day. You set me up to meet Betty today, and to speak with that lonely woman at the bookshop, and all of the other people you have already planned to bless my life with just by being in it.
A million thank yous will never, ever be enough.
Tonight I am quieted by Your fierce, undeniable love.
Please let me always be full of gratitude and let me always be teachable. Open my spirit wide, wide, wide to receive all that you are, my God, my King.
I want to relearn your love over and over and over.
These last few years could have been a horror story. For a very long time I thought it was. I was angry with you sometimes. I was so sad. I lost everything. Job, car, income, home, children, friends, identity, self-confidence, purpose, health. I came undone and you stitched me back together.
My horror story has led me here,
to this moment,
on this bedroom floor in a state I never thought I’d live in,
In front of this heater,
with my eyes dripping tears onto my pajamas,
realizing now that it was never meant to be a horror story. It was always going to be a tale of victory, simply because you are the Author of it.
Wow.
Thursday, December 6, 2012
Saturday, December 1, 2012
Feel like absolute crap today.
I've been pushing too hard and now the crash has come, weakening the limbs and clouding the brain so heavily with overwhelming fatigue.
The lights are off, save for one dim nightlight and I am in silence. Everywhere hurts. The exhaustion is something fierce that cannot be conveyed with words.
I hate Fibromyalgia.
I've been pushing too hard and now the crash has come, weakening the limbs and clouding the brain so heavily with overwhelming fatigue.
The lights are off, save for one dim nightlight and I am in silence. Everywhere hurts. The exhaustion is something fierce that cannot be conveyed with words.
I hate Fibromyalgia.
Saturday, November 17, 2012
60%
Sometimes the pain and fatigue are really just THAT bad, and it takes some time to charge the batteries again. I've been so active lately, and I am darn proud of it! I think back to 3 years ago, and even just months ago and so much progress has been made. I believe the most pivotal transformation started to happen once I accepted and understood that I was not working to be cured. Suddenly I started to make steps to have a livable life, right where I was at.
Truthfully, the VERY most important thing in having my Fibromyalgia managed, is the constant knowledge that I can cover all of my bases and still have days where I can barely move, where I will feel miserable by no fault of my own, that I DO have an illness, that I do what I can. Getting that, living that... it enables me to enjoy my life in a way I hadn't in years. I have stopped beating myself up about it, for the most part, and that really frees me up to expend energy on other things.
Sleep is the absolute best medicine, staying in a routine with all of the medications, and riding my bike have really fueled a sense of well-being. Over a year ago I made the most difficult decision of my life thus far, and moved away from my hometown and the little child I love more than anyone. I went through a deep, dark night of the soul and cried, crawled, and scrambled my way out of the pitch black and into the light. God, forever my staple, forever my refuge, forever my focal point. Even when I wanted to give up and let the Fibromyalgia just have it's way, Abba did not let me linger in misery for long. He gave me such gifts in the people and life around me. He set me upright and trailed my palm with His... I followed, eyes swollen from the tears, and heart heavy from immense heartbreak.
And slowly, so very slowly, the sunshine crept in. And now my quality of life, though I am still very sick, is about 60% better than even 6 months ago. 60%. I still struggle everyday, I still have moments of frustration, and I definitely have annoyance, and yet... 60%.
That amount allows me to sit at the dinner table (with earplugs of course) with my family, enables me to ride my bike at least 5 times a week, gives me self-discipline to stop eating the sugar that is the #1 enemy of Fibro, allows me to do load after load of laundry, run errands, drive a car, go out places alone, see movies, and focus on my writing more. It allows me to dream about future plans- writing, spontaneity, travel, and always adventure.
In no way am I saying I am fixed. I still have to pick and choose. I still get drained after a quick outing. I still feel overwhelmed by sounds and touch and bright lights. I still have to be very careful with what I do everyday. I still have pain 24/7 and fatigue presses on me constantly. I still feel sick. The beautiful thing is that facets of my personality that were buried have been resurrected and I am walking in my dreams again. I no longer carry that persistent anxiety and sadness. That fear to be out in public, that sadness at not being able to do what I used to do. I quite like this new me- healed emotionally & newly brazen as my old confidence has come back drop by drop. I am no longer afraid, of neither what is going to happen to me with Fibromyalgia, nor what anyone thinks about me. I feel more alive than I ever have.
I think some of that has to do with age. Truly, the 30's are not to be dreaded. I feel more secure in my own skin then I ever have. I own it. I listen to my body. Oddly, I thank Fibromyalgia for some of that. It's taught me to be disciplined, though for the first years of it I kicked and screamed. ;) And some of it is because of the people in my life. I am truly blessed in this world with very amazing, brave, bright spark plugs of human beings! I don't know that I would have ever seen or known the brilliant beauty of the human soul without experiencing sickness. No other trial I've endured has ever stripped everything away like sickness has. In the stillness of agony, my eyes have been privy to see the most beautiful things in everything absolutely ordinary. And much of the healing comes from God. My holy, generous, beautiful, illuminating God.
So while I still have days where I lay on the floor in front of my heater, unmoving... tears of frustration, bad moods, boundaries, having to say no, feelings of guilt that swell... I also have days of bliss. Pain free? No. But lovely... oh so very, very lovely and right and full of cherishing promise.
Who am I to have won such a glorious life? Riddled with pain and trial and turmoil, and still also, joy and laughter and so much love?
"When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.
Refrain:
It is well, with my soul,
It is well, it is well, with my soul.
Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.
My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!
For me, be it Christ, be it Christ hence to live:
If Jordan above me shall roll,
No pang shall be mine, for in death as in life
Thou wilt whisper Thy peace to my soul.
But, Lord, ’tis for Thee, for Thy coming we wait,
The sky, not the grave, is our goal;
Oh, trump of the angel! Oh, voice of the Lord!
Blessed hope, blessed rest of my soul!
And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul."
-Horatio G. Spafford
You did it: you changed wild lament
into whirling dance;
You ripped off my black mourning band
and decked me with wildflowers.
I’m about to burst with song;
I can’t keep quiet about you.
God, my God,
I can’t thank you enough.
Psalm 30:11-12
Love,
Janet
Truthfully, the VERY most important thing in having my Fibromyalgia managed, is the constant knowledge that I can cover all of my bases and still have days where I can barely move, where I will feel miserable by no fault of my own, that I DO have an illness, that I do what I can. Getting that, living that... it enables me to enjoy my life in a way I hadn't in years. I have stopped beating myself up about it, for the most part, and that really frees me up to expend energy on other things.
Sleep is the absolute best medicine, staying in a routine with all of the medications, and riding my bike have really fueled a sense of well-being. Over a year ago I made the most difficult decision of my life thus far, and moved away from my hometown and the little child I love more than anyone. I went through a deep, dark night of the soul and cried, crawled, and scrambled my way out of the pitch black and into the light. God, forever my staple, forever my refuge, forever my focal point. Even when I wanted to give up and let the Fibromyalgia just have it's way, Abba did not let me linger in misery for long. He gave me such gifts in the people and life around me. He set me upright and trailed my palm with His... I followed, eyes swollen from the tears, and heart heavy from immense heartbreak.
And slowly, so very slowly, the sunshine crept in. And now my quality of life, though I am still very sick, is about 60% better than even 6 months ago. 60%. I still struggle everyday, I still have moments of frustration, and I definitely have annoyance, and yet... 60%.
That amount allows me to sit at the dinner table (with earplugs of course) with my family, enables me to ride my bike at least 5 times a week, gives me self-discipline to stop eating the sugar that is the #1 enemy of Fibro, allows me to do load after load of laundry, run errands, drive a car, go out places alone, see movies, and focus on my writing more. It allows me to dream about future plans- writing, spontaneity, travel, and always adventure.
In no way am I saying I am fixed. I still have to pick and choose. I still get drained after a quick outing. I still feel overwhelmed by sounds and touch and bright lights. I still have to be very careful with what I do everyday. I still have pain 24/7 and fatigue presses on me constantly. I still feel sick. The beautiful thing is that facets of my personality that were buried have been resurrected and I am walking in my dreams again. I no longer carry that persistent anxiety and sadness. That fear to be out in public, that sadness at not being able to do what I used to do. I quite like this new me- healed emotionally & newly brazen as my old confidence has come back drop by drop. I am no longer afraid, of neither what is going to happen to me with Fibromyalgia, nor what anyone thinks about me. I feel more alive than I ever have.
I think some of that has to do with age. Truly, the 30's are not to be dreaded. I feel more secure in my own skin then I ever have. I own it. I listen to my body. Oddly, I thank Fibromyalgia for some of that. It's taught me to be disciplined, though for the first years of it I kicked and screamed. ;) And some of it is because of the people in my life. I am truly blessed in this world with very amazing, brave, bright spark plugs of human beings! I don't know that I would have ever seen or known the brilliant beauty of the human soul without experiencing sickness. No other trial I've endured has ever stripped everything away like sickness has. In the stillness of agony, my eyes have been privy to see the most beautiful things in everything absolutely ordinary. And much of the healing comes from God. My holy, generous, beautiful, illuminating God.
So while I still have days where I lay on the floor in front of my heater, unmoving... tears of frustration, bad moods, boundaries, having to say no, feelings of guilt that swell... I also have days of bliss. Pain free? No. But lovely... oh so very, very lovely and right and full of cherishing promise.
Who am I to have won such a glorious life? Riddled with pain and trial and turmoil, and still also, joy and laughter and so much love?
"When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.
Refrain:
It is well, with my soul,
It is well, it is well, with my soul.
Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.
My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!
For me, be it Christ, be it Christ hence to live:
If Jordan above me shall roll,
No pang shall be mine, for in death as in life
Thou wilt whisper Thy peace to my soul.
But, Lord, ’tis for Thee, for Thy coming we wait,
The sky, not the grave, is our goal;
Oh, trump of the angel! Oh, voice of the Lord!
Blessed hope, blessed rest of my soul!
And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul."
-Horatio G. Spafford
You did it: you changed wild lament
into whirling dance;
You ripped off my black mourning band
and decked me with wildflowers.
I’m about to burst with song;
I can’t keep quiet about you.
God, my God,
I can’t thank you enough.
Psalm 30:11-12
Love,
Janet
Tuesday, November 6, 2012
Hello Cool November
It's very, very cold today! I LOVE it, but we all know Fibro is not down with the chilly weather. So, today (more than ever) I am grateful for portable heaters and hot beverages.
It's always strange to be out in the "real" world. I feel like an alien as I watch people interact, and listen to the faint sounds of chatter through the ever present earplugs. It's odd to think of life before Fibro... to remember that I was once a busy bee and that I never once thought twice about interacting or being out in public. It's pleasing to know that I no longer feel afraid to be at someplace like Starbucks. For so long I kept to myself when I had to be out in public. It was strictly fight or flight at all times. No exaggeration. I could have a meltdown of epic proportions just by simple things. There was no one trigger for a panic attack or anger, like the time I muttered some choice curse words at an unsuspecting Safeway employee. The poor thing.
It's been a good year, and I do not say that lightly. I still have Fibromyalgia. I still loathe the medical system. I still have a lot of not so comfortable days in my own skin, BUT as I was reflecting over 2012, I realized that this has been a year of finding my balance.... both in learning to accept my illness and in adjusting after the cross country move. 2010 & 2011 were both so fraught with panic and no answers, and infection after virus after ailment after stress. Yup. I was walking around in darkness, desperate for a good doctor, an official diagnosis, and a way out of the nightmare.
Now, I can say I am no longer full of devastation and turmoil. I have my happy back, and it meets with the joy that was waiting this whole time and my spirit dances.
I am still sick. I still desire a good doctor. I still wonder about my future.
But I am now able to do small things to give me my independence back. A long drive. Reading good books. Baking cookies. Thinking about taking a class or two online next semester or the one after that. Writing. Riding my bike almost every single day, and craving it like mad when I don't.
And even though sickness still invades my body, I feel more alive.
Cheers to this year of intense self-examination and immense growth. It sure as hell didn't happen overnight, and the grumpies still come around occasionally, but with some really hard work I dare say I have come to manage my Fibromyalgia.
For a long time I think I was expecting to be cured, and when I started to understand that wasn't going to happen, I expected to just be better... well enough to be like how I was before... until eventually I started to appreciate who I was becoming. Sometimes I feel tricked... I'll wake up feeling pretty good and I'll think maybe, just maybe it went away. It never does. I have come to understand that as best as I can, and I look forward to what this next year brings.
It's pretty exciting. ;)
It's always strange to be out in the "real" world. I feel like an alien as I watch people interact, and listen to the faint sounds of chatter through the ever present earplugs. It's odd to think of life before Fibro... to remember that I was once a busy bee and that I never once thought twice about interacting or being out in public. It's pleasing to know that I no longer feel afraid to be at someplace like Starbucks. For so long I kept to myself when I had to be out in public. It was strictly fight or flight at all times. No exaggeration. I could have a meltdown of epic proportions just by simple things. There was no one trigger for a panic attack or anger, like the time I muttered some choice curse words at an unsuspecting Safeway employee. The poor thing.
It's been a good year, and I do not say that lightly. I still have Fibromyalgia. I still loathe the medical system. I still have a lot of not so comfortable days in my own skin, BUT as I was reflecting over 2012, I realized that this has been a year of finding my balance.... both in learning to accept my illness and in adjusting after the cross country move. 2010 & 2011 were both so fraught with panic and no answers, and infection after virus after ailment after stress. Yup. I was walking around in darkness, desperate for a good doctor, an official diagnosis, and a way out of the nightmare.
Now, I can say I am no longer full of devastation and turmoil. I have my happy back, and it meets with the joy that was waiting this whole time and my spirit dances.
I am still sick. I still desire a good doctor. I still wonder about my future.
But I am now able to do small things to give me my independence back. A long drive. Reading good books. Baking cookies. Thinking about taking a class or two online next semester or the one after that. Writing. Riding my bike almost every single day, and craving it like mad when I don't.
And even though sickness still invades my body, I feel more alive.
Cheers to this year of intense self-examination and immense growth. It sure as hell didn't happen overnight, and the grumpies still come around occasionally, but with some really hard work I dare say I have come to manage my Fibromyalgia.
For a long time I think I was expecting to be cured, and when I started to understand that wasn't going to happen, I expected to just be better... well enough to be like how I was before... until eventually I started to appreciate who I was becoming. Sometimes I feel tricked... I'll wake up feeling pretty good and I'll think maybe, just maybe it went away. It never does. I have come to understand that as best as I can, and I look forward to what this next year brings.
It's pretty exciting. ;)
Saturday, November 3, 2012
Friday, November 2, 2012
Oh, Okay....
The way people in the medical field treat people with Fibromyalgia astounds me.
This is not a new thing by any means. I am not the only one who has faced prejudice about illness because of my age, and because many "professionals" do not have accurate information regarding Fibro. Yesterday I had to go see a Rheumatologist because I was referred from my primary nurse, and it is necessary for my pending SSI/Medicaid case.
I didn't have high hopes even though this doctor supposedly specializes in Fibro and Osteoarthritis (which I have). Whenever I have an appointment with a new doctor the anxiety and dread amps up, even when I am not consciously thinking about it. After being to dozens of doctors and being treated like an insane person over and over, getting discouraged and crying my eyeballs out, I finally decided awhile back that I do not give one fig about what these people say to me, unless it is beneficial and edifying. The trouble with having this illness is that it is so not understood by the powers that be. Much in the way that other illnesses were treated with contempt before they were understood (MS, depression, bi-polar,etc.) so is Fibromyalgia. The truth is that we, the patients, have to search high and low for concrete answers and we honestly do not have one solidifying one. Instead we have various possibilities and contributors and hundreds of skeptics. It's madness.
Case in point, I go to this appointment, wait 45-60 minutes, and as soon as the doctor comes in she asks what she can do for me. I start talking, she cuts me off repeatedly, thwarts every question I have about diet, exercise, pain medication, my current regime, weight gain... She basically told me she can't do anything for me, that I am too young to have Osteoarthritis (to which I replied, "how do you think I felt at 29 years old being told I have the back of a 65 year old woman and that I couldn't continue in my current profession?"). She grilled me about how I received the diagnosis, patronized me when I told her it took me a few years to get to a functional place, where I can exercise again and have a semi-normal existence. I told her I am looking for a doctor who believes in me and who will work with me to manage this disease. She asked, "the important thing is do you believe in yourself?" Well no freaking duh lady! But you are the one with the prescription pad and the authority for my Medicaid case. Anyway...
So she is in the room for all about 5 minutes. No exam, no looking through my medical paperwork at all. She tells me to come back in 6 months. I stopped her, and said I wasn't trying to be snarky, but what was the point of coming to see her, paying out of pocket when she didn't do anything? She said there was nothing she could do.
REALLY?!
A Rheumatologist who specializes in Fibro can do nothing for a Fibro patient?
She made a half-hearted attempt to press my tender points. Looked disinterestedly through my paperwork. She said she doesn't deal with viral infections, would not test me for autoimmune issues because she didn't think I had Lupus. I explained family history of Lupus and MS, my own positive and negative autoimmune results. Asked her if she could check my ear because I get frequent earaches and a lump on my neck that lives there. She told me I had to have my primary check those things out.
Excuse me, but what the hell is a specialist for? Especially paying out of pocket????
I left, got in the car, and cried. Not in self-pity, not in depression, but in anger. For myself, and for all of those out there dealing with any illness who are dismissed by medical professionals. I can guarantee if I were a damn Kardashian I could probably get an MRI for a hurt pinky, with a prescription for unlimited pain killers. Money rules. Going to appointments like this reminds me of how it used to be... when my body was falling apart bit by bit, and there were NO answers at all. When I would bleed and ache and fight to make it through each day, and no one would help me or take me seriously. Sure, now I can ride my bike 5 times a week, I can go to a movie, or chat on the phone a bit... but oh, what it took to get here.
This is not the first time I have had to deal with someone being rude to me because I am young and because I have an illness that astounds them. Honestly, I think a lot of it has to do with their own pride. If they can't fix us they don't want to deal with us. It's so infuriating! Rheumatologists are starting to deny Fibro patients because it is seeming to be Neurological in origin, yet Neurologists are not yet taking us on, so we are just floating in the abyss of sickness.
It makes me utterly grateful that I was able to go to the Fibro clinic in California. If I hadn't researched on my own online, I never would have known that was an option and I wouldn't have gotten all those blood tests done, revealing the viral infections and other hidden issues contributing to the Fibromyalgia. I never would have gotten started on supplements, and I would still be in the dark.
I feel grateful that I know which medications to take for my particular Fibro cocktail. I am glad to have carved out a functional lifestyle, albeit extremely limited, after scrambling around like mad for years, driving myself into the ground. It took a long time and extreme effort to climb out of depression and into acceptance! But it is not enough for me to be "managed." What about my friends who are treated like loony bins? What about those who do not have access to free health care? What about those of us who are still treated like we are crazy, like Fibro is all in our heads?
I pray for the day when we will be taken seriously. When people stop saying all we need is exercise and a good diet. When doctors HAVE to believe us. When our age is no longer a reason we are discriminated against.
When I was getting treatment at the Fibro clinic my doctor told me, "You are not crazy. This is NOT in your head. You have a real disease and it will take some hard work and a lot of time to get it managed."
Managed, not cured.
There is no cure as of yet.
But we can learn to live with it.
I'd like to remind you that you are not crazy. You have a disease. It is not in your head. You are not alone.
Out of the dozens of doctors I have seen, there are probably only about 3-4 that have taken the time to get to know me and who have taken the time to help me.
It's a shame that most doctors are unqualified for their jobs.
This is not a new thing by any means. I am not the only one who has faced prejudice about illness because of my age, and because many "professionals" do not have accurate information regarding Fibro. Yesterday I had to go see a Rheumatologist because I was referred from my primary nurse, and it is necessary for my pending SSI/Medicaid case.
I didn't have high hopes even though this doctor supposedly specializes in Fibro and Osteoarthritis (which I have). Whenever I have an appointment with a new doctor the anxiety and dread amps up, even when I am not consciously thinking about it. After being to dozens of doctors and being treated like an insane person over and over, getting discouraged and crying my eyeballs out, I finally decided awhile back that I do not give one fig about what these people say to me, unless it is beneficial and edifying. The trouble with having this illness is that it is so not understood by the powers that be. Much in the way that other illnesses were treated with contempt before they were understood (MS, depression, bi-polar,etc.) so is Fibromyalgia. The truth is that we, the patients, have to search high and low for concrete answers and we honestly do not have one solidifying one. Instead we have various possibilities and contributors and hundreds of skeptics. It's madness.
Case in point, I go to this appointment, wait 45-60 minutes, and as soon as the doctor comes in she asks what she can do for me. I start talking, she cuts me off repeatedly, thwarts every question I have about diet, exercise, pain medication, my current regime, weight gain... She basically told me she can't do anything for me, that I am too young to have Osteoarthritis (to which I replied, "how do you think I felt at 29 years old being told I have the back of a 65 year old woman and that I couldn't continue in my current profession?"). She grilled me about how I received the diagnosis, patronized me when I told her it took me a few years to get to a functional place, where I can exercise again and have a semi-normal existence. I told her I am looking for a doctor who believes in me and who will work with me to manage this disease. She asked, "the important thing is do you believe in yourself?" Well no freaking duh lady! But you are the one with the prescription pad and the authority for my Medicaid case. Anyway...
So she is in the room for all about 5 minutes. No exam, no looking through my medical paperwork at all. She tells me to come back in 6 months. I stopped her, and said I wasn't trying to be snarky, but what was the point of coming to see her, paying out of pocket when she didn't do anything? She said there was nothing she could do.
REALLY?!
A Rheumatologist who specializes in Fibro can do nothing for a Fibro patient?
She made a half-hearted attempt to press my tender points. Looked disinterestedly through my paperwork. She said she doesn't deal with viral infections, would not test me for autoimmune issues because she didn't think I had Lupus. I explained family history of Lupus and MS, my own positive and negative autoimmune results. Asked her if she could check my ear because I get frequent earaches and a lump on my neck that lives there. She told me I had to have my primary check those things out.
Excuse me, but what the hell is a specialist for? Especially paying out of pocket????
I left, got in the car, and cried. Not in self-pity, not in depression, but in anger. For myself, and for all of those out there dealing with any illness who are dismissed by medical professionals. I can guarantee if I were a damn Kardashian I could probably get an MRI for a hurt pinky, with a prescription for unlimited pain killers. Money rules. Going to appointments like this reminds me of how it used to be... when my body was falling apart bit by bit, and there were NO answers at all. When I would bleed and ache and fight to make it through each day, and no one would help me or take me seriously. Sure, now I can ride my bike 5 times a week, I can go to a movie, or chat on the phone a bit... but oh, what it took to get here.
This is not the first time I have had to deal with someone being rude to me because I am young and because I have an illness that astounds them. Honestly, I think a lot of it has to do with their own pride. If they can't fix us they don't want to deal with us. It's so infuriating! Rheumatologists are starting to deny Fibro patients because it is seeming to be Neurological in origin, yet Neurologists are not yet taking us on, so we are just floating in the abyss of sickness.
It makes me utterly grateful that I was able to go to the Fibro clinic in California. If I hadn't researched on my own online, I never would have known that was an option and I wouldn't have gotten all those blood tests done, revealing the viral infections and other hidden issues contributing to the Fibromyalgia. I never would have gotten started on supplements, and I would still be in the dark.
I feel grateful that I know which medications to take for my particular Fibro cocktail. I am glad to have carved out a functional lifestyle, albeit extremely limited, after scrambling around like mad for years, driving myself into the ground. It took a long time and extreme effort to climb out of depression and into acceptance! But it is not enough for me to be "managed." What about my friends who are treated like loony bins? What about those who do not have access to free health care? What about those of us who are still treated like we are crazy, like Fibro is all in our heads?
I pray for the day when we will be taken seriously. When people stop saying all we need is exercise and a good diet. When doctors HAVE to believe us. When our age is no longer a reason we are discriminated against.
When I was getting treatment at the Fibro clinic my doctor told me, "You are not crazy. This is NOT in your head. You have a real disease and it will take some hard work and a lot of time to get it managed."
Managed, not cured.
There is no cure as of yet.
But we can learn to live with it.
I'd like to remind you that you are not crazy. You have a disease. It is not in your head. You are not alone.
Out of the dozens of doctors I have seen, there are probably only about 3-4 that have taken the time to get to know me and who have taken the time to help me.
It's a shame that most doctors are unqualified for their jobs.
Tuesday, October 30, 2012
Make a Difference
It's amazing how insensitive people are. Further proof of how Fibromyalgia is dismissed as a real illness is how people feel that they are qualified to tell us how to make ourselves better. As if we are not pro-active about our own health, as if we just sit around with our heads hanging low, feeling sorry for ourselves.
Uh no. Would they tell someone with MS that they need only change their diet or do some type of yoga or swirl around on some magical balance ball? What about Parkinson's? Cancer? Diabetes? So why is it practically a given that upon finding out we have Fibro, each person will attempt to school us on a disease they have no comprehension of?
I get that people think they are being helpful, but they aren't. What they are doing is adding more pressure to the pressure we already pile on ourselves. That pressure from society to be better or else.
I will say it again- Fibromyalgia is a very sensitive disease and everyone experiences it differently. We have shared symptoms, but our own version of Fibro changes daily, depending on what our bodies have gone through. Case in point, yesterday I was in a severe state of pain and fatigue, but today I woke up with a little more energy to fix the bed right away. This does not mean I feel 100%. It means that I have about 2% more energy then yesterday and if I rest all of today and all of tomorrow, perhaps MAYBE I will be able to handle my appointment on Thursday. 3 days of rest for one outing. No matter how I feel I have to go though. That's the thing- we have to pick and choose what we can do and most of the time we would benefit from simply staying in bed. The reason? Not some magical potion but sleep. Yup, sleep. Diet & exercise do lend itself to the disease, but not always in a positive way. Sleep, however, is the very best medicine we've got. It's not easy to fall asleep... Sometimes it can take hours even with the use of sleep aids. I'm not sure why but I know the fact that our muscles never relax has to contribute. They are always taut. When we do get to sleep sometimes we repeatedly wake up. It's a beautiful thing when we do get sleep and that is the number one prescription for this disease.
Aside from sleep, medication, diet, and exercise there is not a lot to be done for this illness, but you can bet your bottom dollar that we try everything we can.
I'll tell you what will be more helpful then unsolicited advice about a very real, debilitating medical condition... Simply exhibiting understanding when we cannot hang out or commit to plans. Encouraging us to rest, to not feel guilty about being sick, being kind and not sharing in the prejudice against chronic illness we face in this busy, go go go world we live in.
It makes all of the difference in the world when people stop trying to fix us, and instead, accept us as we are- sickness and all.
This disease is not laziness or exaggerated for dramatic purposes. We have a defunct immune system and a defunct central nervous system. There is something very real damaging our ability to process sound, touch, etc.
The day "they" discover the exact root of this illness and what it is actually doing versus just writing it off as "some pain and fatigue" that will be cured with exercise, will be a celebratory day. I look forward to it with all of my heart and I pray that none of you EVER experience the destruction of Fibromyalgia.
Uh no. Would they tell someone with MS that they need only change their diet or do some type of yoga or swirl around on some magical balance ball? What about Parkinson's? Cancer? Diabetes? So why is it practically a given that upon finding out we have Fibro, each person will attempt to school us on a disease they have no comprehension of?
I get that people think they are being helpful, but they aren't. What they are doing is adding more pressure to the pressure we already pile on ourselves. That pressure from society to be better or else.
I will say it again- Fibromyalgia is a very sensitive disease and everyone experiences it differently. We have shared symptoms, but our own version of Fibro changes daily, depending on what our bodies have gone through. Case in point, yesterday I was in a severe state of pain and fatigue, but today I woke up with a little more energy to fix the bed right away. This does not mean I feel 100%. It means that I have about 2% more energy then yesterday and if I rest all of today and all of tomorrow, perhaps MAYBE I will be able to handle my appointment on Thursday. 3 days of rest for one outing. No matter how I feel I have to go though. That's the thing- we have to pick and choose what we can do and most of the time we would benefit from simply staying in bed. The reason? Not some magical potion but sleep. Yup, sleep. Diet & exercise do lend itself to the disease, but not always in a positive way. Sleep, however, is the very best medicine we've got. It's not easy to fall asleep... Sometimes it can take hours even with the use of sleep aids. I'm not sure why but I know the fact that our muscles never relax has to contribute. They are always taut. When we do get to sleep sometimes we repeatedly wake up. It's a beautiful thing when we do get sleep and that is the number one prescription for this disease.
Aside from sleep, medication, diet, and exercise there is not a lot to be done for this illness, but you can bet your bottom dollar that we try everything we can.
I'll tell you what will be more helpful then unsolicited advice about a very real, debilitating medical condition... Simply exhibiting understanding when we cannot hang out or commit to plans. Encouraging us to rest, to not feel guilty about being sick, being kind and not sharing in the prejudice against chronic illness we face in this busy, go go go world we live in.
It makes all of the difference in the world when people stop trying to fix us, and instead, accept us as we are- sickness and all.
This disease is not laziness or exaggerated for dramatic purposes. We have a defunct immune system and a defunct central nervous system. There is something very real damaging our ability to process sound, touch, etc.
The day "they" discover the exact root of this illness and what it is actually doing versus just writing it off as "some pain and fatigue" that will be cured with exercise, will be a celebratory day. I look forward to it with all of my heart and I pray that none of you EVER experience the destruction of Fibromyalgia.
Monday, October 29, 2012
Moody Me
I don't feel all that inspired to write tonight, but I feel like these are the times that NEED to be documented, because it is the reality of living with illness. For about a month my body was allowing me to be slightly more active and so I took full advantage by going on errands and beginning to exercise again. Without warning my body decided to shut down again, so now I feel the repercussions of that last month.
The one thing that has stayed constant is the exercise. I take a day or two off here and there, but otherwise it has been consistent. I used to walk but now I utilize my bike. It's refreshing to be out in the clean air, but I know I have to balance things out or else I end up sowing into the Fibromyalgia bucket and it really does like to collect my energy, as limited as that is!
Since the weather is beyond freezing right now (which I love, love, love!) my body has decided to start having spasms and cramping everywhere again. This time of year is not Fibromyalgia friendly in the slightest. My skin hurts more then usual. Last night the sheets felt like they were stabbing my legs, and today I had to remove my necklace because anything touching me feels horrendous. Even my hair is hurting. It's pretty insane what this illness does to a person. It's right up there with cancer in my book, but not as recognized and therefore, written off as not as dire.
Trust me, it's dire.
They say it's not fatal, but I choose to disagree. EVERYTHING is impacted. Mind and body.
This week I have a first time appointment at a Rheumatologist. I am dreading it. Unless you've been to dozens of doctors within the span of a few years, you may wonder what the big deal is. Well, one is the appointment itself. Getting dressed in something other than pajamas, riding in a car, having to re-explain your entire history- including EVERY medication, EVERY ailment... it's a lot. I used to enjoy going to doctors appointments.... but after these last few years of being dismissed, patronized, not believed, and discredited, I just don't have it in me to have faith in the medical system. I am appreciative for it, and I have maybe 3 or 4 positive doctors experiences, but for the most part, an appointment with a new doctor causes palpitations and dread. I absolutely cannot stand when someone says not to stress or that it'll be fine.
DUH.
Obviously. You know, those of us with Fibromyalgia are pretty damn strong. You think we complain? Ha! You don't know the half of the half of what we go through every single moment of every single day. So, to tell us how to feel about OUR disease is maddening. When you go through it yourself, then you get to have an opinion. It sounds harsh because IT IS harsh.
Anyway, I'll go and give my extensive history and be assessed. This is necessary for my SSI appeal, and I need regular care with a specialist versus going to the clinic. With all of my ailments and especially with Fibro, a regular doctor does not suffice. The most disheartening thing is that going to a new doctor will not do anything. That isn't defeatist. I'm being honest. I spent years going to doctor after doctor, gathering diagnoses along the way, and being put on different medications. Now, I am at a point where I am on what medications aid me, but there is still no cure. So, a new doctor will only be affirming for like the 4th time that I do have Fibromyalgia, she'll press all my tender spots, she'll tell me I need to exercise (which I do but they'll say it anyway), and they'll tell me what they do know... which is so incredibly limited that it is almost laughable.
I heard somewhere that Rheumatologists are starting to deny patients with Fibromyalgia. The reason being that this illness stems from Neurological issues... but Neurologists are not taking us on yet, so we basically are lost in the between place. It's so infuriating!
I am praying for that marvelous day when they will be able to detect this disease with a blood test, with a scan, with anything concrete, because sadly, that seems to be the only way the world will take us seriously. There is an article I read that says that a brain scan showed evidence. Here is the link: http://www.mysquirrelbait.com/brain-scans-detect-fibromyalgia/
This isn't a la la post about how everything is oh-so glittering with sunshine, but the reality that Fibromyalgia is completely rude and being ill sucks.
Was my progress real? Yes, it is real. I have come a long, long way from that broken, beat down place. My moments of optimism are genuine, but these dark moments are just as imperative to feel, explore, and grow into and out of. It took me ages to understand that being in a bad mood because I am sick is okay sometimes. Hell, if others get their knickers twisted after a day or two of sickness, then I believe we are entitled to a few days of grumpies, my fellow Fibro warriors.
I have absolutely no energy. A shower a day is a huge task again. Exercise is NOT a cure to all of you who think it is. I am being active despite the feeling like slime, and guess what? I still have Fibro! Gasp. My neck hurts to hold up, my skin feels like it is burning and being stabbed, and all I yearn to do is sleep.
BUT when we feel like that, we still do what we need to. We text people back, we watch a tv show with a loved one, we shower, we do laundry, we sit at the dinner table, we make phone calls, we do paperwork, we carve pumpkins, we take pictures, we force ourselves to eat food that tastes gross.
We do this because we are champions.
Truly.
The one thing that has stayed constant is the exercise. I take a day or two off here and there, but otherwise it has been consistent. I used to walk but now I utilize my bike. It's refreshing to be out in the clean air, but I know I have to balance things out or else I end up sowing into the Fibromyalgia bucket and it really does like to collect my energy, as limited as that is!
Since the weather is beyond freezing right now (which I love, love, love!) my body has decided to start having spasms and cramping everywhere again. This time of year is not Fibromyalgia friendly in the slightest. My skin hurts more then usual. Last night the sheets felt like they were stabbing my legs, and today I had to remove my necklace because anything touching me feels horrendous. Even my hair is hurting. It's pretty insane what this illness does to a person. It's right up there with cancer in my book, but not as recognized and therefore, written off as not as dire.
Trust me, it's dire.
They say it's not fatal, but I choose to disagree. EVERYTHING is impacted. Mind and body.
This week I have a first time appointment at a Rheumatologist. I am dreading it. Unless you've been to dozens of doctors within the span of a few years, you may wonder what the big deal is. Well, one is the appointment itself. Getting dressed in something other than pajamas, riding in a car, having to re-explain your entire history- including EVERY medication, EVERY ailment... it's a lot. I used to enjoy going to doctors appointments.... but after these last few years of being dismissed, patronized, not believed, and discredited, I just don't have it in me to have faith in the medical system. I am appreciative for it, and I have maybe 3 or 4 positive doctors experiences, but for the most part, an appointment with a new doctor causes palpitations and dread. I absolutely cannot stand when someone says not to stress or that it'll be fine.
DUH.
Obviously. You know, those of us with Fibromyalgia are pretty damn strong. You think we complain? Ha! You don't know the half of the half of what we go through every single moment of every single day. So, to tell us how to feel about OUR disease is maddening. When you go through it yourself, then you get to have an opinion. It sounds harsh because IT IS harsh.
Anyway, I'll go and give my extensive history and be assessed. This is necessary for my SSI appeal, and I need regular care with a specialist versus going to the clinic. With all of my ailments and especially with Fibro, a regular doctor does not suffice. The most disheartening thing is that going to a new doctor will not do anything. That isn't defeatist. I'm being honest. I spent years going to doctor after doctor, gathering diagnoses along the way, and being put on different medications. Now, I am at a point where I am on what medications aid me, but there is still no cure. So, a new doctor will only be affirming for like the 4th time that I do have Fibromyalgia, she'll press all my tender spots, she'll tell me I need to exercise (which I do but they'll say it anyway), and they'll tell me what they do know... which is so incredibly limited that it is almost laughable.
I heard somewhere that Rheumatologists are starting to deny patients with Fibromyalgia. The reason being that this illness stems from Neurological issues... but Neurologists are not taking us on yet, so we basically are lost in the between place. It's so infuriating!
I am praying for that marvelous day when they will be able to detect this disease with a blood test, with a scan, with anything concrete, because sadly, that seems to be the only way the world will take us seriously. There is an article I read that says that a brain scan showed evidence. Here is the link: http://www.mysquirrelbait.com/brain-scans-detect-fibromyalgia/
This isn't a la la post about how everything is oh-so glittering with sunshine, but the reality that Fibromyalgia is completely rude and being ill sucks.
Was my progress real? Yes, it is real. I have come a long, long way from that broken, beat down place. My moments of optimism are genuine, but these dark moments are just as imperative to feel, explore, and grow into and out of. It took me ages to understand that being in a bad mood because I am sick is okay sometimes. Hell, if others get their knickers twisted after a day or two of sickness, then I believe we are entitled to a few days of grumpies, my fellow Fibro warriors.
I have absolutely no energy. A shower a day is a huge task again. Exercise is NOT a cure to all of you who think it is. I am being active despite the feeling like slime, and guess what? I still have Fibro! Gasp. My neck hurts to hold up, my skin feels like it is burning and being stabbed, and all I yearn to do is sleep.
BUT when we feel like that, we still do what we need to. We text people back, we watch a tv show with a loved one, we shower, we do laundry, we sit at the dinner table, we make phone calls, we do paperwork, we carve pumpkins, we take pictures, we force ourselves to eat food that tastes gross.
We do this because we are champions.
Truly.
Wednesday, October 24, 2012
Sound
It is not some mild annoyance, but rather, instead, a likened feeling of an alarming phone call that comes in the dead of night, the complete panic and sudden fear and NEED to get away. That is what having Fibromyalgia is like with noise. It rises and rises, each pitch a direct hit to the nervous system... A ping becomes driving, forcing, splitting especially competing with voices near you, the way the wind is howling just so, the crumple of a piece of paper 2 rooms over, and that kitchen sink has been on for what must be at least 500 hours straight...
Tuesday, October 9, 2012
Full Transparency
People like a good story. The kind where positive realizations are shared and they can feel warm and fuzzy and encouraged after they read it. I am not immune to loving those stories. Tears will drizzle down my face as I cheer inwardly for whoever has reached a state of internal sunshine. It makes for a beautiful life.
But what of the darker stories? The kind we usually don't get to read because what is shared with the public are only the happy chapters? I refuse to do that. I would be doing a disservice to myself and to others who have Fibromyalgia. I would only be portraying the downhill moments versus the ones where I am climbing, straining, dragging myself up the jagged hills of illness. Sure, the view on the mountaintop is brilliant, but I wouldn't ever see it if I didn't force myself to keep climbing.
About a month ago I started a new medication, which helps with the nerves. It has been a miracle medication for me. I felt less immediate pain and because of that I started to do more. Instead of one major ( this would be a trip to Walmart or Target) outing for the month like usual, I instead went out 2-3x a week. I also started exercising on a regular basis again. First with walking around the block, and when I inherited a bike, I relished in the freedom of flying down the street as the wind whipped my hair. I was laughing with ease, sleeping easily, and enjoying feeling human after nearly three years of being cooped up inside 98% of the time.
I slowly started to feel the effects of exercising too much, of going out into the real world... Noises became even more intolerable, the pain came back with a vengeance... But I had tasted a newfound freedom, one I had lived without for years, and I wasn't willing to give it up again. So even though I was already in a flare I just kept pushing. It felt beyond grand to be able to function in the actual world again! I was proud of myself and I fed off of the cheers from family and friends. I felt like less of a disappointment (that is something we Fibro-ites deal with continually... Feeling like we are letting down everyone in our lives because we are so extremely limited) and that was really wonderful.
This is the part where a person without Fibro would say that this is awesome and I should keep exercising every day, and this is the "cure" for it all... and where the one who does have Fibro would give me their own two cents for how they handle their flares and their exercise. Both are opinions I am not looking for.
Fibromyalgia is a specifically tailored illness. I've said it before and I will say it enough times it takes for people to GET it. We are all different. We share varying degrees of a long list of symptoms, but how and when we feel each of those things is such a personal experience. We who have this illness know it is not a one size fits all, but sometimes we can get smug thinking we have something mastered.
We don't.
Fibromyalgia is moody. It's unpredictable and unkind. We think we have a delicate balance but then it switches up on us.
As I said, lately I have started to feel the reality slump down on me... Little by little, until everything started driving me bananas as my nervous system went haywire! I started having trouble sleeping again and would lie awake until 6-7am, the pain pressed HARD in forgotten places... And tonight the thud happened and suddenly I was feeling hotter then Africa inside... I'm surprised there was not steam coming from my ears. I threw the remote across the room, and I cried. The trigger was when something happened with the cable and DVR, but that was only a manifestation of the deep rage that ran beneath the surface.
I was... and am angry. Furious even. I realize again that I DO have limitations... A lot of them. I can't exercise every single day (though I want to and typing that makes me feel like a bird trapped in a cage or having my wings clipped off), I can't go out every week, Gabapentin is not a cure, and I still have Fibromyalgia.
The reason I am able to have "good" days is because I moved here to NC. I stopped working, I had to leave behind my whole life, I had to leave behind Mylie. I had to stop pretending I was normal and continuing to drive myself into the ground because I desperately wanted to stay active and the same.
This last month I felt like the old me... Still with Fibro, but also capable of having a life outside of these four walls. And it felt damn good... Too good. So good that it caused rage to realize it was an illusion...
Because I am sick, and I do have limitations, and I can do some things, but I cannot do all things no matter how much I ache to.
Last week I had this notion that maybe I could get a job again, I felt freedom again, and it was wonderful. But now I have learned that having a series of "good" days still means I have to ration my previous energy and only select a few to dos. If I don't I will end up on day ten of a massive flare, ignoring the very real alarms going off in my body, and breaking down from the extreme overload and pain.
It's quite upsetting to understand this once again, but on the flip side I am grateful I had this last month. It has reminded me that I can still live, still exercise, still have days of freedom... But I also have to remember that I am not healthy. I AM sick.
Maybe one of these days I'll actually fully grasp that and stop pushing so hard. I'm not so good at the resting thing... I find I won't sit still for very long, I rarely lay down even when my body is begging that is all I do, I do loads of laundry while in a flare, and I ride my bike several days despite knowing I shouldn't, I don't do sick properly. That has got to change in A major way. I have made a lot of progress handling this disease, but I still need so much more patience and growth.
It has been a hard lesson re-learned for my stubborn mind.
Until next time,
Janet
But what of the darker stories? The kind we usually don't get to read because what is shared with the public are only the happy chapters? I refuse to do that. I would be doing a disservice to myself and to others who have Fibromyalgia. I would only be portraying the downhill moments versus the ones where I am climbing, straining, dragging myself up the jagged hills of illness. Sure, the view on the mountaintop is brilliant, but I wouldn't ever see it if I didn't force myself to keep climbing.
About a month ago I started a new medication, which helps with the nerves. It has been a miracle medication for me. I felt less immediate pain and because of that I started to do more. Instead of one major ( this would be a trip to Walmart or Target) outing for the month like usual, I instead went out 2-3x a week. I also started exercising on a regular basis again. First with walking around the block, and when I inherited a bike, I relished in the freedom of flying down the street as the wind whipped my hair. I was laughing with ease, sleeping easily, and enjoying feeling human after nearly three years of being cooped up inside 98% of the time.
I slowly started to feel the effects of exercising too much, of going out into the real world... Noises became even more intolerable, the pain came back with a vengeance... But I had tasted a newfound freedom, one I had lived without for years, and I wasn't willing to give it up again. So even though I was already in a flare I just kept pushing. It felt beyond grand to be able to function in the actual world again! I was proud of myself and I fed off of the cheers from family and friends. I felt like less of a disappointment (that is something we Fibro-ites deal with continually... Feeling like we are letting down everyone in our lives because we are so extremely limited) and that was really wonderful.
This is the part where a person without Fibro would say that this is awesome and I should keep exercising every day, and this is the "cure" for it all... and where the one who does have Fibro would give me their own two cents for how they handle their flares and their exercise. Both are opinions I am not looking for.
Fibromyalgia is a specifically tailored illness. I've said it before and I will say it enough times it takes for people to GET it. We are all different. We share varying degrees of a long list of symptoms, but how and when we feel each of those things is such a personal experience. We who have this illness know it is not a one size fits all, but sometimes we can get smug thinking we have something mastered.
We don't.
Fibromyalgia is moody. It's unpredictable and unkind. We think we have a delicate balance but then it switches up on us.
As I said, lately I have started to feel the reality slump down on me... Little by little, until everything started driving me bananas as my nervous system went haywire! I started having trouble sleeping again and would lie awake until 6-7am, the pain pressed HARD in forgotten places... And tonight the thud happened and suddenly I was feeling hotter then Africa inside... I'm surprised there was not steam coming from my ears. I threw the remote across the room, and I cried. The trigger was when something happened with the cable and DVR, but that was only a manifestation of the deep rage that ran beneath the surface.
I was... and am angry. Furious even. I realize again that I DO have limitations... A lot of them. I can't exercise every single day (though I want to and typing that makes me feel like a bird trapped in a cage or having my wings clipped off), I can't go out every week, Gabapentin is not a cure, and I still have Fibromyalgia.
The reason I am able to have "good" days is because I moved here to NC. I stopped working, I had to leave behind my whole life, I had to leave behind Mylie. I had to stop pretending I was normal and continuing to drive myself into the ground because I desperately wanted to stay active and the same.
This last month I felt like the old me... Still with Fibro, but also capable of having a life outside of these four walls. And it felt damn good... Too good. So good that it caused rage to realize it was an illusion...
Because I am sick, and I do have limitations, and I can do some things, but I cannot do all things no matter how much I ache to.
Last week I had this notion that maybe I could get a job again, I felt freedom again, and it was wonderful. But now I have learned that having a series of "good" days still means I have to ration my previous energy and only select a few to dos. If I don't I will end up on day ten of a massive flare, ignoring the very real alarms going off in my body, and breaking down from the extreme overload and pain.
It's quite upsetting to understand this once again, but on the flip side I am grateful I had this last month. It has reminded me that I can still live, still exercise, still have days of freedom... But I also have to remember that I am not healthy. I AM sick.
Maybe one of these days I'll actually fully grasp that and stop pushing so hard. I'm not so good at the resting thing... I find I won't sit still for very long, I rarely lay down even when my body is begging that is all I do, I do loads of laundry while in a flare, and I ride my bike several days despite knowing I shouldn't, I don't do sick properly. That has got to change in A major way. I have made a lot of progress handling this disease, but I still need so much more patience and growth.
It has been a hard lesson re-learned for my stubborn mind.
Until next time,
Janet
Monday, October 8, 2012
Monster Flare
Oh yeah, I have Fibromyalgia.
The agony has manifested in full force today. Aside from the normal, daily fatigue and pain there is THE monster of it all, made aware by skin that feels bruised and twisted and ripped apart from the inside out. The heavy limbs, and squinty eyes from a head that feels clasped in huge hands squeezing entirely too tight. Last night I massaged my neck in vain for 3 hours hoping to push out that bothersome lump, and today my arms feel the burden of moving for so long, and my neck is not happy either. Please do not be confused... Fibromyalgia is NEVER a pain, fatigue free ride, but there is "normal" level, which to a healthy person would be horrendous (i.e. flu, aching muscles after exercising too much, a double shift at work, etc.)... that is our everyday "normal" and so our monster days are like being slammed by basketballs in every crevice, or being hit by a moving car... the kind of days where we just want to throw in the towel or lay down with absolutely no movement whatsoever. The days where we feel like we just may break under the strain of so much physical agony. Truly, it is a beast.
Still, I am trying to focus on the positives... I went walking once this week, and rode my bicycle for 4 days in a row. That's a huge accomplishment! In the last two and a half weeks I have been able to exercise more than I have in the last 3 years. I don't want to dismiss that even though I am feeling the hellish flare right now. In the shower I stood under that hot water, letting it hit my back, feeling like one giant bruise. OUCH!
I am hoping that if I lay low for these two days that my body will be up for the day trip to Wilmington on Wednesday. I am supremely looking forward to it, and feel frustration that my body decided that now is the time to collapse after all of my recent activity.
So on this lovely rainy day, I plan to put my feet up and watch these movies on the DVR, and try in vain to ignore the pulsing, throbbing agony that Fibromyalgia is dishing out.
Until next time,
Janet
The agony has manifested in full force today. Aside from the normal, daily fatigue and pain there is THE monster of it all, made aware by skin that feels bruised and twisted and ripped apart from the inside out. The heavy limbs, and squinty eyes from a head that feels clasped in huge hands squeezing entirely too tight. Last night I massaged my neck in vain for 3 hours hoping to push out that bothersome lump, and today my arms feel the burden of moving for so long, and my neck is not happy either. Please do not be confused... Fibromyalgia is NEVER a pain, fatigue free ride, but there is "normal" level, which to a healthy person would be horrendous (i.e. flu, aching muscles after exercising too much, a double shift at work, etc.)... that is our everyday "normal" and so our monster days are like being slammed by basketballs in every crevice, or being hit by a moving car... the kind of days where we just want to throw in the towel or lay down with absolutely no movement whatsoever. The days where we feel like we just may break under the strain of so much physical agony. Truly, it is a beast.
Still, I am trying to focus on the positives... I went walking once this week, and rode my bicycle for 4 days in a row. That's a huge accomplishment! In the last two and a half weeks I have been able to exercise more than I have in the last 3 years. I don't want to dismiss that even though I am feeling the hellish flare right now. In the shower I stood under that hot water, letting it hit my back, feeling like one giant bruise. OUCH!
I am hoping that if I lay low for these two days that my body will be up for the day trip to Wilmington on Wednesday. I am supremely looking forward to it, and feel frustration that my body decided that now is the time to collapse after all of my recent activity.
So on this lovely rainy day, I plan to put my feet up and watch these movies on the DVR, and try in vain to ignore the pulsing, throbbing agony that Fibromyalgia is dishing out.
Until next time,
Janet
Sunday, October 7, 2012
It's Not Always Rainbows
This lump on my neck has been bugging me for weeks now. It comes and goes, varying in size. It feels like the knots that I associate with Fibromyalgia. The same kind we get in our wrists, or back, or legs, or wherever. Except this lump is stubborn and clings to the left side of my neck like it lives there, which I guess it kind of does. Slight massages (of the non-professional variety) work only a little, but it works better than nothing.
The heart palpitations made a comeback the other day. It'd been awhile, and suddenly here they were. It's amazing how much they feel like a heart attack or something (or so I would assume, never having had a heart attack)even though we know that it is not a heart attack.
And I had one of my nightmares this morning. It was a spiritually related dream like usual, and demonic activity was present. In the dream I usually start trying to say "Jesus!" and cannot talk. Then I wake up saying it, and feeling the fear from the nightmare. NO fun.
I feel like I just took a bath in someone else's poop. Isn't that the way of it? When we allow even just ONE toxic person into out lives, suddenly those carefully erected boundaries crash down... even when we try to keep them in place. It does not work. Once we have the boundary up, it needs to stay up, and those toxic people cannot be allowed to come in anymore... EVER. I have tried on many occasions to have relationships with toxic people in my world WITH boundaries in place, but I quickly learn again that toxic people DO NOT respect ANY boundaries and will come in uninvited, trample everything, and leave you to deal with the garbage they leave behind. We all need to have boundaries with such people, and for the one with Fibromyalgia it is that much more important. We are already so sensitive to everything, and emotions are no different.
So right now, I need to take a shower and soak in the presence of God for awhile to get my fresh air back.
No more toxicity.
The heart palpitations made a comeback the other day. It'd been awhile, and suddenly here they were. It's amazing how much they feel like a heart attack or something (or so I would assume, never having had a heart attack)even though we know that it is not a heart attack.
And I had one of my nightmares this morning. It was a spiritually related dream like usual, and demonic activity was present. In the dream I usually start trying to say "Jesus!" and cannot talk. Then I wake up saying it, and feeling the fear from the nightmare. NO fun.
I feel like I just took a bath in someone else's poop. Isn't that the way of it? When we allow even just ONE toxic person into out lives, suddenly those carefully erected boundaries crash down... even when we try to keep them in place. It does not work. Once we have the boundary up, it needs to stay up, and those toxic people cannot be allowed to come in anymore... EVER. I have tried on many occasions to have relationships with toxic people in my world WITH boundaries in place, but I quickly learn again that toxic people DO NOT respect ANY boundaries and will come in uninvited, trample everything, and leave you to deal with the garbage they leave behind. We all need to have boundaries with such people, and for the one with Fibromyalgia it is that much more important. We are already so sensitive to everything, and emotions are no different.
So right now, I need to take a shower and soak in the presence of God for awhile to get my fresh air back.
No more toxicity.
Saturday, October 6, 2012
And Then There Was Saturday
Last night was hard.
It started great, but near bedtime I got into an argument with someone very close to me. Words flew, stabbing and ripping like swords to the soul. I cried. Huge sobs. I was hurt, and I hurt someone else. Aren't fights just awful? You know while you are in it that you want out, but it's such a tight grip and that darn pride steps in, and you want to be soft and say sorry and just make it be pretty again, but the hurt is just too palpable and you stand there vulnerable. Needless to say, sleep did not come easy, and when I woke up my eyelids were puffy, and I had a headache. There was an ache my heart. Apologies had been said, but words are such daggers, and upon facing the day I still felt icky.
I showered, started the first load of laundry, and read some blogs. The flare settled on my bones and muscles and begged me to come close to the ground, but I knew I needed to get out.
I was grumpy as I led the car down to the neighborhood Krispy Kreme. One of those days where every single driver is that driver in front of you who insists on pressing the brake every five seconds. And when I walked into Krispy Kreme, what do you know, they were out of fresh, hot glazed. The very thing I was craving. The way it melts as soon as it hits the tongue. But the boxes that held the two dozen have Halloween decorations on them, and the donut I scarfed down was delicious, especially coupled with the ice cold bottled water I purchased. Isn't cold water one of the most delicious treats ever?!
As I drove home, my mood was lighter. I saw with clearer eyes... the lady walking with her teenage girls, the green tree that reached high. I listened.... as the radio played funky songs that resonated deep and brought me back to childhood and the circle of love I have carried my whole life. I felt refreshed. What a miracle that I was out at all! A few months ago if I was in a flare there is no way on earth I could be around other human beings, and yet there I was!
And tonight as the sun dips low in the sky, I will ride my bike and marvel at the air racing swiftly past, and when I return I will be warm and safe in a house with sturdy walls, and be thankful for one more day.
It started great, but near bedtime I got into an argument with someone very close to me. Words flew, stabbing and ripping like swords to the soul. I cried. Huge sobs. I was hurt, and I hurt someone else. Aren't fights just awful? You know while you are in it that you want out, but it's such a tight grip and that darn pride steps in, and you want to be soft and say sorry and just make it be pretty again, but the hurt is just too palpable and you stand there vulnerable. Needless to say, sleep did not come easy, and when I woke up my eyelids were puffy, and I had a headache. There was an ache my heart. Apologies had been said, but words are such daggers, and upon facing the day I still felt icky.
I showered, started the first load of laundry, and read some blogs. The flare settled on my bones and muscles and begged me to come close to the ground, but I knew I needed to get out.
I was grumpy as I led the car down to the neighborhood Krispy Kreme. One of those days where every single driver is that driver in front of you who insists on pressing the brake every five seconds. And when I walked into Krispy Kreme, what do you know, they were out of fresh, hot glazed. The very thing I was craving. The way it melts as soon as it hits the tongue. But the boxes that held the two dozen have Halloween decorations on them, and the donut I scarfed down was delicious, especially coupled with the ice cold bottled water I purchased. Isn't cold water one of the most delicious treats ever?!
As I drove home, my mood was lighter. I saw with clearer eyes... the lady walking with her teenage girls, the green tree that reached high. I listened.... as the radio played funky songs that resonated deep and brought me back to childhood and the circle of love I have carried my whole life. I felt refreshed. What a miracle that I was out at all! A few months ago if I was in a flare there is no way on earth I could be around other human beings, and yet there I was!
And tonight as the sun dips low in the sky, I will ride my bike and marvel at the air racing swiftly past, and when I return I will be warm and safe in a house with sturdy walls, and be thankful for one more day.
Friday, October 5, 2012
On a Friday
Driving along singing with the stereo. Thinking about home and how much of who I am dances in California air, but a part of my spirit is now here in North Carolina too.
At the thrift store I found some gorgeous plates that remind me of the 70's & a very old Joy of Cooking book. I collect old books- the older the better. The employee stocking the shelves was holding the book with love and I could see she really wanted it. She explained that employees are not allowed to purchase from there. I put the book in my basket and after she rang me up I told her I bought the book for her. I loved her surprise! Her cheeks turned red and she was so happy. You could light the sky with her smile. :) :) :)
Starting to know the city I live in. The woman at the library knows who me and my mom are and always says hi.
Such a pleasant thing- to gab with a stranger and share the same air for a few minutes.
Only recently have I started walking with my head up again, meeting eyes with strangers, feeling confident in my own skin. For so long I walked around entirely broken. Rushing when I went out on a rare day by myself. Scared I was going to have a meltdown or be too tired or in pain to go anywhere at all. For a long, long time it WAS like that. This, for my adventurous spirit, was most crushing. I felt the giant Fibro monster on my back at all times. Not simply the physical pain, but more crippling, the emotional. I was so nervous and afraid. So, so afraid. Somehow in recent months I have got my groove back, and I smile freely, I mosey, I live. I feel the pain of Fibromyalgia, I pay heed to it's demands, I feel the strangling of fatigue... but I DO when I can, and my oh my, it's a sensational thing! I am no longer terrified to go on a long drive (well, maybe not too far), get lost on purpose, and explore. Maybe now I can get to know North Carolina a little better. It's time, I think.
Crying at the thrill of simply seeing a movie. Earplugs in, tears streaming down my face. Such a small thing, such a treat. Watching talent unfold before my very eyes with people singing and moving and breathing life on that giant screen. Life... It's a miracle. I used to take it for granted. Going to a movie whenever I wanted. But now it's a treasure among a common day. I love that.
As I left the theatre the sun sat low in the sky and I got to grab a Starbucks and head home to ride my bicycle. Is this really my life? How can it be THIS grand in just the ordinary?
And this is what sickness has taught me... That life, in all of its forms (good, bad, & mundane), is precious and fleeting and so, so, so lovely.
After the pain and darkness of the last three years I finally understand the saying, "I have Fibromyalgia but it doesn't have me." I could never agree with that before, because truthfully, Fibromyalgia DID have me, and if I am not careful it could have me again. But after so much work, and miles of progress, I know now I can have a tangible life EVEN with illness.
There is still so much to be learned in this life on earth, and I am wide open to receive it. I saw this as I drove away from the theatre and as I read it I laughed. It's fitting because the space in my heart is vast and ready for all of the things to come... the happy, the sad, the ordinary.
Thank you, God. Thank you, thank you.
Psalm 36:5-9
Your love, Lord, reaches to the heavens,
your faithfulness to the skies.
Your righteousness is like the highest mountains,
your justice like the great deep.
You, Lord, preserve both people and animals.
How priceless is your unfailing love, O God!
People take refuge in the shadow of your wings.
They feast on the abundance of your house;
you give them drink from your river of delights.
For with you is the fountain of life;
in your light we see light.
Your love is in the little things...
With the buffet of sprinkling stars as I rode my bicycle around the block,the road pitch black but for a few sporadic street lamps. It was a little scary, and a lot of fun.
With the opening of my very favorite resturant, Olive Garden, opening in this little town. Making it that much more like home, where I spent so many hours with so many wonderful people eating those salty, greasy bread sticks, sharing lives.
With the parents you have blessed me with.
With this warm house to be safe in night after night.
Dear Life,
You thrill me.
Honest, you do.
At the thrift store I found some gorgeous plates that remind me of the 70's & a very old Joy of Cooking book. I collect old books- the older the better. The employee stocking the shelves was holding the book with love and I could see she really wanted it. She explained that employees are not allowed to purchase from there. I put the book in my basket and after she rang me up I told her I bought the book for her. I loved her surprise! Her cheeks turned red and she was so happy. You could light the sky with her smile. :) :) :)
Starting to know the city I live in. The woman at the library knows who me and my mom are and always says hi.
Such a pleasant thing- to gab with a stranger and share the same air for a few minutes.
Only recently have I started walking with my head up again, meeting eyes with strangers, feeling confident in my own skin. For so long I walked around entirely broken. Rushing when I went out on a rare day by myself. Scared I was going to have a meltdown or be too tired or in pain to go anywhere at all. For a long, long time it WAS like that. This, for my adventurous spirit, was most crushing. I felt the giant Fibro monster on my back at all times. Not simply the physical pain, but more crippling, the emotional. I was so nervous and afraid. So, so afraid. Somehow in recent months I have got my groove back, and I smile freely, I mosey, I live. I feel the pain of Fibromyalgia, I pay heed to it's demands, I feel the strangling of fatigue... but I DO when I can, and my oh my, it's a sensational thing! I am no longer terrified to go on a long drive (well, maybe not too far), get lost on purpose, and explore. Maybe now I can get to know North Carolina a little better. It's time, I think.
Crying at the thrill of simply seeing a movie. Earplugs in, tears streaming down my face. Such a small thing, such a treat. Watching talent unfold before my very eyes with people singing and moving and breathing life on that giant screen. Life... It's a miracle. I used to take it for granted. Going to a movie whenever I wanted. But now it's a treasure among a common day. I love that.
As I left the theatre the sun sat low in the sky and I got to grab a Starbucks and head home to ride my bicycle. Is this really my life? How can it be THIS grand in just the ordinary?
And this is what sickness has taught me... That life, in all of its forms (good, bad, & mundane), is precious and fleeting and so, so, so lovely.
After the pain and darkness of the last three years I finally understand the saying, "I have Fibromyalgia but it doesn't have me." I could never agree with that before, because truthfully, Fibromyalgia DID have me, and if I am not careful it could have me again. But after so much work, and miles of progress, I know now I can have a tangible life EVEN with illness.
There is still so much to be learned in this life on earth, and I am wide open to receive it. I saw this as I drove away from the theatre and as I read it I laughed. It's fitting because the space in my heart is vast and ready for all of the things to come... the happy, the sad, the ordinary.
Thank you, God. Thank you, thank you.
Psalm 36:5-9
Your love, Lord, reaches to the heavens,
your faithfulness to the skies.
Your righteousness is like the highest mountains,
your justice like the great deep.
You, Lord, preserve both people and animals.
How priceless is your unfailing love, O God!
People take refuge in the shadow of your wings.
They feast on the abundance of your house;
you give them drink from your river of delights.
For with you is the fountain of life;
in your light we see light.
Your love is in the little things...
With the buffet of sprinkling stars as I rode my bicycle around the block,the road pitch black but for a few sporadic street lamps. It was a little scary, and a lot of fun.
With the opening of my very favorite resturant, Olive Garden, opening in this little town. Making it that much more like home, where I spent so many hours with so many wonderful people eating those salty, greasy bread sticks, sharing lives.
With the parents you have blessed me with.
With this warm house to be safe in night after night.
Dear Life,
You thrill me.
Honest, you do.
Thursday, October 4, 2012
Thrills
Today Aaron put the tires on and I rode my bicycle for the first time ever! I hopped on, pajamas and all, and whipped around the block. The wind tossed my hair, the sun smiled on me, and my inner child danced with joy. Halfway around there was a little bit of an incline and I had to work a bit harder. By the time I climbed from my perch my knees shook like jello but I was grinning ear to ear. Now I just need a pretty little basket to collect my flowers and some fixin' on the rust stains.
Afterward I was determined to find my box of books that I just knew I had up in the attic. With this Fibro fog rolling in at all hours of everyday, I couldn't remember if I had gotten rid of these specific kids books (which I collect) before the move or if they were hiding around somewhere. In a moment of clarity I realized there were some that I had forgotten about, would surely never ever give away, and almost climbed that attic ladder in the wee hours to dig them out. Reason (otherwise known as Aaron) made me wait. So today I found them and threw each stack down the ladder as sweat poured down my face. I also brought down my beloved Cricket doll from childhood. I coveted this precious beauty for ages and on my birthday (I must have been 7 or 8 I think) I was blessed with that big blue box and my very own talking baby doll! My original doll had so much wear and tear from love, and one eye fell out of the socket and we gave her away. So, a few years ago I found a mint in box Cricket and claimed her as my own. Ah, memories from childhood are the sweetest.
And then a delicious parade of clouds! Cotton candy swirls dotting and filling the sky. I'd never seen a sunset quite like that in all of my days.
I was jonesin' to ride my darling Bella Blue again. Not too far! Just around the few houses surrounding us on this quiet little street.
And suddenly we were kids again.
Amazing what playing outside in the moonlight can do for a soul.
So there you have it. A treasure of a day. I am paying the Fibromyalgia price right now, but it was worth it. Oh was it worth it.
Goodnight lovely hearts.
Afterward I was determined to find my box of books that I just knew I had up in the attic. With this Fibro fog rolling in at all hours of everyday, I couldn't remember if I had gotten rid of these specific kids books (which I collect) before the move or if they were hiding around somewhere. In a moment of clarity I realized there were some that I had forgotten about, would surely never ever give away, and almost climbed that attic ladder in the wee hours to dig them out. Reason (otherwise known as Aaron) made me wait. So today I found them and threw each stack down the ladder as sweat poured down my face. I also brought down my beloved Cricket doll from childhood. I coveted this precious beauty for ages and on my birthday (I must have been 7 or 8 I think) I was blessed with that big blue box and my very own talking baby doll! My original doll had so much wear and tear from love, and one eye fell out of the socket and we gave her away. So, a few years ago I found a mint in box Cricket and claimed her as my own. Ah, memories from childhood are the sweetest.
And then a delicious parade of clouds! Cotton candy swirls dotting and filling the sky. I'd never seen a sunset quite like that in all of my days.
I was jonesin' to ride my darling Bella Blue again. Not too far! Just around the few houses surrounding us on this quiet little street.
And suddenly we were kids again.
Amazing what playing outside in the moonlight can do for a soul.
So there you have it. A treasure of a day. I am paying the Fibromyalgia price right now, but it was worth it. Oh was it worth it.
Goodnight lovely hearts.
Wednesday, October 3, 2012
Scenes From a Day
Today was busy, busy! My appointment went well. The mole infection is gone and I just need to have it checked every 3 months or so. Refill was prescribed, just need to wait a week or so to have it filled. The nurse I see is so awesome. Finally a medical professional who is nice!!!! Only took a few years. Aside from the Fibro Clinic and my old dermatologist in Vallejo... they were gems. Dropped off my application for YMCA financial assistance and will call back in a couple of days to see if I got approved. I hope so and then I can add swimming to my list of exercise! I did 8 straight days of walking, took a break, did two days, and am now taking a break today. It feels good. Oh, and Aaron got a tire for my inherited bike, who I have affectionately named Bella. Bella Blue because she is blue. I asked if we can get me a basket so I can pick flowers. I'm such a girl! ;)
Other errands went great! Found some records at the thrift store and a few more books. I swear my collection of classics is growing for a mere $25 a book! If I could I would go every single day of my life. Which reminds me, the library is having a book sale next week! My dream! I was just online looking for information on that last week and had no luck, so seeing the sign today was glorious.
Flaring today after being in a flare the last few days, and being out for a few hours today but my hopes are high to get rested and maybe treat myself to a movie on Friday. It's been a few months and I really want to see Pitch Perfect. I've got to wait to see Looper when the boy is off of work. Then next week we all might go to my favorite town, Wilmington! Can't wait!
My nephew was sent back to the hospital last night. Please pray for him as he is dealing with some heavy emotional stuff. Please pray for God to remind him of his significance and worth and for his depression to lift and for him to be filled with joy again. Thank you!
I can't believe it is October! My favorite month in all the year.
Other errands went great! Found some records at the thrift store and a few more books. I swear my collection of classics is growing for a mere $25 a book! If I could I would go every single day of my life. Which reminds me, the library is having a book sale next week! My dream! I was just online looking for information on that last week and had no luck, so seeing the sign today was glorious.
Flaring today after being in a flare the last few days, and being out for a few hours today but my hopes are high to get rested and maybe treat myself to a movie on Friday. It's been a few months and I really want to see Pitch Perfect. I've got to wait to see Looper when the boy is off of work. Then next week we all might go to my favorite town, Wilmington! Can't wait!
My nephew was sent back to the hospital last night. Please pray for him as he is dealing with some heavy emotional stuff. Please pray for God to remind him of his significance and worth and for his depression to lift and for him to be filled with joy again. Thank you!
I can't believe it is October! My favorite month in all the year.
Tuesday, October 2, 2012
Noise!
Sound with Fibromyalgia is like constantly having your ears bleed.
Right now someone is in the other room washing dishes. An insect is chirping on repeat outside of the window (which is closed). The only form of escape is ear plugs, but wearing them constantly tends to irritate the inside of the ears.
It's aggravating. I would have to say the overwhelming sound and sight part of this disease is one of the hardest things about it. There is no way to make the sensory overload stop and it can get to the point where you want to scream.
People around us can try their hardest to be quiet, to make smaller movements, to help us in any way that they can and still it is never enough.
We hear everything. EVERYTHING. The crinkle of a plastic bag rooms away, the refrigerator door cracking open, the running water hitting every dish washed, the motorcycle half a block away. And it hurts. Physically, actually hurts. It is an indescribable pain but I can assure you that it is all too real.
It'd be swell if they made a pill for this!
Right now someone is in the other room washing dishes. An insect is chirping on repeat outside of the window (which is closed). The only form of escape is ear plugs, but wearing them constantly tends to irritate the inside of the ears.
It's aggravating. I would have to say the overwhelming sound and sight part of this disease is one of the hardest things about it. There is no way to make the sensory overload stop and it can get to the point where you want to scream.
People around us can try their hardest to be quiet, to make smaller movements, to help us in any way that they can and still it is never enough.
We hear everything. EVERYTHING. The crinkle of a plastic bag rooms away, the refrigerator door cracking open, the running water hitting every dish washed, the motorcycle half a block away. And it hurts. Physically, actually hurts. It is an indescribable pain but I can assure you that it is all too real.
It'd be swell if they made a pill for this!
Me: Now and Then and Always
I am...
Dozens of pens
Scribbling my thoughts on random napkins and scraps
Inspired by the ocean
Candles everywhere all of the time
Used books and items passed down
Afraid of stains and dirt
The girl who keeps a journal but burns the pile when it reaches too many
Crying at everything because my heart is tender
Delighting in flowers and trees and nature
Avid reader and lover of words
Soft heart but tough when I need to be
In love with poetry and lyrics that twist and wind and lodge in my gut
Up for adventure at anytime
Who's the Boss and Twilight Zone from the 80's re-runs
Soy salted caramel hot chocolates
Music that massages the soul
Pink pink pink!
Unicorns and fairies and girly things
A believer of fairy tales
Photographs everywhere of everything and everyone
Intrigued in the history of people and places
An admirer of those who have gone before me, the stories of those whose heads now beam of gray
Ferris wheels
That little dreamboat child who has my heart eternally- Mylie Jade
A mama to any child anywhere at anytime
I will not shop unless it is a bookstore or a thrift store
Frequenter of Olive Garden
Showers everyday
Breathing in the crisp cool air
Lover of October days and nights
Memories of that 17th summer
God and Jesus but never ever religion
Sun kissed by summer sun
Airplanes and airports
Hanging out at Kaiser waiting for my boy
Reading at the dinner table
Movies by myself to escape the heat outside
Milk chocolate butter creams at Sees
Saving my allowance to buy a record or a new Sweet Valley High
Holding the flowers picked for me by child hands
Long walks and playing in the rain
Midnight play for Mylie's 5th birthday
LeeLoo and my girl dressed as a ballerina with fairy wings dancing across the grass
Cross country move with the boy- Subway sandwiches and a cooler and just us and the open road
Dreaming of France and everywhere else
Missing the Philippines always
California girl through and through
Secretly loves country songs
Bunnies and pigs
Treasure chests of secrets and memories
Target
Winnie the Pooh
Those 4 teens who I would do anything for
Family
My Small World blanket
Granny sweaters and Uggs
Battling sickness daily
Cabins & cottages
Raindrops!
Purses-especially old ones
Full of hope
Portable heaters
Georgia at 22 years old- new and delighted
Doesn't drink coffee
Loves a good grilled cheese sandwich
Laughing until my stomach aches
Brazen with a first kiss
Filipino traditions and old wives tales
A tattered Bible with me wherever I go
Walking the streets of Wilmington
Dozens of pens
Scribbling my thoughts on random napkins and scraps
Inspired by the ocean
Candles everywhere all of the time
Used books and items passed down
Afraid of stains and dirt
The girl who keeps a journal but burns the pile when it reaches too many
Crying at everything because my heart is tender
Delighting in flowers and trees and nature
Avid reader and lover of words
Soft heart but tough when I need to be
In love with poetry and lyrics that twist and wind and lodge in my gut
Up for adventure at anytime
Who's the Boss and Twilight Zone from the 80's re-runs
Soy salted caramel hot chocolates
Music that massages the soul
Pink pink pink!
Unicorns and fairies and girly things
A believer of fairy tales
Photographs everywhere of everything and everyone
Intrigued in the history of people and places
An admirer of those who have gone before me, the stories of those whose heads now beam of gray
Ferris wheels
That little dreamboat child who has my heart eternally- Mylie Jade
A mama to any child anywhere at anytime
I will not shop unless it is a bookstore or a thrift store
Frequenter of Olive Garden
Showers everyday
Breathing in the crisp cool air
Lover of October days and nights
Memories of that 17th summer
God and Jesus but never ever religion
Sun kissed by summer sun
Airplanes and airports
Hanging out at Kaiser waiting for my boy
Reading at the dinner table
Movies by myself to escape the heat outside
Milk chocolate butter creams at Sees
Saving my allowance to buy a record or a new Sweet Valley High
Holding the flowers picked for me by child hands
Long walks and playing in the rain
Midnight play for Mylie's 5th birthday
LeeLoo and my girl dressed as a ballerina with fairy wings dancing across the grass
Cross country move with the boy- Subway sandwiches and a cooler and just us and the open road
Dreaming of France and everywhere else
Missing the Philippines always
California girl through and through
Secretly loves country songs
Bunnies and pigs
Treasure chests of secrets and memories
Target
Winnie the Pooh
Those 4 teens who I would do anything for
Family
My Small World blanket
Granny sweaters and Uggs
Battling sickness daily
Cabins & cottages
Raindrops!
Purses-especially old ones
Full of hope
Portable heaters
Georgia at 22 years old- new and delighted
Doesn't drink coffee
Loves a good grilled cheese sandwich
Laughing until my stomach aches
Brazen with a first kiss
Filipino traditions and old wives tales
A tattered Bible with me wherever I go
Walking the streets of Wilmington
Sunday, September 30, 2012
The Limit
Eyes closed.
Twitches in the right leg.
Fatigue bearing down hard... and then harder still.
Pain everywhere, not taking a chance on me ignoring the warning signals this time.
I am overjoyed at the fact that I have been able to exercise daily (with one day of a break) these last two weeks. It has felt good physically and emotionally, and now I know I can do it again. That makes this gigantic flare worth it, and I must be honest and say I am in a hurricane of a flare.
To coin Britney Spears, "oops! I did it again." I thought I was going to outsmart Fibro. It's easy to do. We're so desperate to not have pain, not have fatigue that we often times start to believe that it's gone. My energy levels were up, and though my pain was pushing, I ignored it and kept at it. Not just exercise, but going on several outings versus my one or two a month. And now I feel it everywhere. Absolutely everywhere.
There is no shortage of pain... stabbing, unmerciless pain. Fatigue wrapping it's rubber band around my eyes and head and entire being. I am in misery physically. I ignored the warning yellow lights these last few days and now it's a complete red. And yet I feel encouraged....
Because I DID IT! I exercised. And I will again.
Encouraged because I am in a flare but I still have my positive outlook. That has taken three years to cultivate! It's a victory of epic proportions for me. I am emotionally balanced even while my body is freaking it's freak.
I am so grateful for that. Without the emotional balance, all that is left is sad, angry, lonely feelings.
I have hit my Fibro limit for right now, but my spirit soars...
And that makes everything worth it.
Twitches in the right leg.
Fatigue bearing down hard... and then harder still.
Pain everywhere, not taking a chance on me ignoring the warning signals this time.
I am overjoyed at the fact that I have been able to exercise daily (with one day of a break) these last two weeks. It has felt good physically and emotionally, and now I know I can do it again. That makes this gigantic flare worth it, and I must be honest and say I am in a hurricane of a flare.
To coin Britney Spears, "oops! I did it again." I thought I was going to outsmart Fibro. It's easy to do. We're so desperate to not have pain, not have fatigue that we often times start to believe that it's gone. My energy levels were up, and though my pain was pushing, I ignored it and kept at it. Not just exercise, but going on several outings versus my one or two a month. And now I feel it everywhere. Absolutely everywhere.
There is no shortage of pain... stabbing, unmerciless pain. Fatigue wrapping it's rubber band around my eyes and head and entire being. I am in misery physically. I ignored the warning yellow lights these last few days and now it's a complete red. And yet I feel encouraged....
Because I DID IT! I exercised. And I will again.
Encouraged because I am in a flare but I still have my positive outlook. That has taken three years to cultivate! It's a victory of epic proportions for me. I am emotionally balanced even while my body is freaking it's freak.
I am so grateful for that. Without the emotional balance, all that is left is sad, angry, lonely feelings.
I have hit my Fibro limit for right now, but my spirit soars...
And that makes everything worth it.
Tuesday, September 25, 2012
Not Quite Trite
When I first got sick I started writing down every little symptom. It was a puzzle that needed to be solved and I believed with my whole heart that a doctor somewhere was going to diagnose me, medicate me, and set me back on the road to regular life. Now, nearly three years (or four depending on what we go by) I know that is not the reality.
I am aware that the issues I deal with, most especially Fibromyalgia, are chronic and long lasting. I know what medications aid me and certain things I can do to create wellness for myself, and I know that there is light at the end of that long, dark, lonely tunnel.
I still keep track of my daily symptoms. It has become a habit by now, and in some ways it helps to see how far I have come. It is a reminder that I am not crazy and that I am really and truly enduring... fighting... this disease. It went from scribbles on scraps of paper, to calendar paper, and eventually I started logging it into a composition book... a book that is now almost full.
Looking at these pieces of paper, pen scrawled across displaying the heartache and craziness of the last few years, is a bittersweet thing. I see how very far I have come, and I feel new peace and joy at where I am heading. This is certainly not what I expected to experience at 32 years of age, but it has been all mine for the taking, and I would not trade all of the tears, agony, and confusion for anything for it has resulted in growth unmeasured.
I am thankful.
For the last few years I have been unable to exercise on a daily basis, and yet... these past 5 days I have walked around the block every single evening. Today will make it 6. That is no easy feat, and I am so thrilled and excited! Is it easy? No. Not at all. I am in a huge flare, the invisible cotton stuffing and filling my ears and head, my limbs weak and in protest after going out yesterday. I feel the irritation mount as fatigue demands and sucks and takes from me with no warning. I have to correct as I type because my eyes strain and I misspell every other word. I say this, not as a woe is me, but as a sign that things can get better despite the very real illness invading my body.
Things DO get better.
The darkness gives way to a little light, and than more, and suddenly it's blazing, and even though the pain is still there, the fatigue is still pressing, it pales in comparison to feeling like I am back.
I am back.
Back where? Back to a mental state where I can go for a walk, knowing it will hurt, but that it will also make me feel emotionally better too. Back to laughing easily. Back to feeling hope and excitement. Back to wanting to be a part of the world again. Back to living.
I do not want to make light of this. This post has been 3+ years in the making. I did not just get sick, have a brief season of acceptance, and then prance my way into exercise and emotional stability. In actuality it has been grueling, 24/7 work. I have screamed, sobbed, lashed out in anger, been depressed.... severely depressed if I am being fully transparent here. I also have to be honest with myself and admit that I am not cured. I still have Fibromyalgia, and I am still liable to get mad, get depressed, or lash out. I am not perfect, and I am still sick. That hasn't changed. What has changed is my response.
I did not wake up 5 days ago and suddenly have this energy to bust out of bed and walk around the block. I still have to push myself to get going. If I can try to explain it, it's like this.... I was in pitch black for a very long time. It was so, so dark. I'm not even sure how I could see at all, but God was faithful, and He kept me going. EVERYTHING contributed. Every comment, every note, every moment of research, every prayer, every tear, every word from every person, each moment logged in my journal, every blog I read, every everything. I knew I was in a wild place, but I did not even know the depth until I started to come out of it a few months ago. And when I started to come out of the wild place, it was a slow, little by little process which led to 5 days ago, which led to yesterday, which led to today and this blog post. I feel like me again. Well, me with some changes. I don't feel like "a normal" but I feel the most normal I have in years. I feel lightness and freedom in my soul, in my spirit, and I will tell you, I had absolutely no idea how much I missed those things until I had them back. Suddenly I know that I know that I know that I can do this! I CAN DO THIS! Not only because I have been, but because the grief is gone and I can see somewhat clearly again. I remember my strengths. I was walking around in shame, walking around with my wounds on the outside.... so insecure, feeling judged, feeling afraid to do anything, say anything, be anything. I let what others said or thought dictate how I lived my life. I was lost. Now I feel secure, I feel like I can stand up for myself again, I feel like I have the ability to say no, because I have re-learned that I don't owe the world, and I have newly learned that I do NOT owe the world for being sick. It sounds the same but it's two very different things. Having Fibromyalgia, it's easy to feel defective and unusable, and not worth the time. Those are lies! It is unicorns and the fresh heady scent of flowers and dazzling streams of water to realize this!
I am not healed in body, but I believe that I am healed emotionally. The trauma of losing so much- job, home, health, friends, etc. has taken me through a desperate and gritty forest, but now I am breathing in the clean air and balance has been restored.
Thank you Jesus!
I am aware that the issues I deal with, most especially Fibromyalgia, are chronic and long lasting. I know what medications aid me and certain things I can do to create wellness for myself, and I know that there is light at the end of that long, dark, lonely tunnel.
I still keep track of my daily symptoms. It has become a habit by now, and in some ways it helps to see how far I have come. It is a reminder that I am not crazy and that I am really and truly enduring... fighting... this disease. It went from scribbles on scraps of paper, to calendar paper, and eventually I started logging it into a composition book... a book that is now almost full.
Looking at these pieces of paper, pen scrawled across displaying the heartache and craziness of the last few years, is a bittersweet thing. I see how very far I have come, and I feel new peace and joy at where I am heading. This is certainly not what I expected to experience at 32 years of age, but it has been all mine for the taking, and I would not trade all of the tears, agony, and confusion for anything for it has resulted in growth unmeasured.
I am thankful.
For the last few years I have been unable to exercise on a daily basis, and yet... these past 5 days I have walked around the block every single evening. Today will make it 6. That is no easy feat, and I am so thrilled and excited! Is it easy? No. Not at all. I am in a huge flare, the invisible cotton stuffing and filling my ears and head, my limbs weak and in protest after going out yesterday. I feel the irritation mount as fatigue demands and sucks and takes from me with no warning. I have to correct as I type because my eyes strain and I misspell every other word. I say this, not as a woe is me, but as a sign that things can get better despite the very real illness invading my body.
Things DO get better.
The darkness gives way to a little light, and than more, and suddenly it's blazing, and even though the pain is still there, the fatigue is still pressing, it pales in comparison to feeling like I am back.
I am back.
Back where? Back to a mental state where I can go for a walk, knowing it will hurt, but that it will also make me feel emotionally better too. Back to laughing easily. Back to feeling hope and excitement. Back to wanting to be a part of the world again. Back to living.
I do not want to make light of this. This post has been 3+ years in the making. I did not just get sick, have a brief season of acceptance, and then prance my way into exercise and emotional stability. In actuality it has been grueling, 24/7 work. I have screamed, sobbed, lashed out in anger, been depressed.... severely depressed if I am being fully transparent here. I also have to be honest with myself and admit that I am not cured. I still have Fibromyalgia, and I am still liable to get mad, get depressed, or lash out. I am not perfect, and I am still sick. That hasn't changed. What has changed is my response.
I did not wake up 5 days ago and suddenly have this energy to bust out of bed and walk around the block. I still have to push myself to get going. If I can try to explain it, it's like this.... I was in pitch black for a very long time. It was so, so dark. I'm not even sure how I could see at all, but God was faithful, and He kept me going. EVERYTHING contributed. Every comment, every note, every moment of research, every prayer, every tear, every word from every person, each moment logged in my journal, every blog I read, every everything. I knew I was in a wild place, but I did not even know the depth until I started to come out of it a few months ago. And when I started to come out of the wild place, it was a slow, little by little process which led to 5 days ago, which led to yesterday, which led to today and this blog post. I feel like me again. Well, me with some changes. I don't feel like "a normal" but I feel the most normal I have in years. I feel lightness and freedom in my soul, in my spirit, and I will tell you, I had absolutely no idea how much I missed those things until I had them back. Suddenly I know that I know that I know that I can do this! I CAN DO THIS! Not only because I have been, but because the grief is gone and I can see somewhat clearly again. I remember my strengths. I was walking around in shame, walking around with my wounds on the outside.... so insecure, feeling judged, feeling afraid to do anything, say anything, be anything. I let what others said or thought dictate how I lived my life. I was lost. Now I feel secure, I feel like I can stand up for myself again, I feel like I have the ability to say no, because I have re-learned that I don't owe the world, and I have newly learned that I do NOT owe the world for being sick. It sounds the same but it's two very different things. Having Fibromyalgia, it's easy to feel defective and unusable, and not worth the time. Those are lies! It is unicorns and the fresh heady scent of flowers and dazzling streams of water to realize this!
I am not healed in body, but I believe that I am healed emotionally. The trauma of losing so much- job, home, health, friends, etc. has taken me through a desperate and gritty forest, but now I am breathing in the clean air and balance has been restored.
Thank you Jesus!
Saturday, September 22, 2012
Exercise and Stuff
After I started the Gabapentin over a week ago, there was immediate relief. I could press my skin in the hurt places and although it was still very painful, there was a noticeable difference. The restless legs and arms stopped, and I enjoyed the fringe benefit of getting groggy which resulted in amazing, beautiful sleep.
Then a few days ago I felt it... the dull, agonizing ache deep, deep in my arms. As I fell into sleep, there it went... jerk. My chest grew tight, the ache worsened until I had to get up.
The Gabapentin had stopped working.
I thought maybe it was a fluke so I upped my dosage the next day to three pills instead on one. This time I felt the ache in my legs and arms, and it felt like before I'd ever taken the medication... except 2x worse. The last two nights were horrible. I couldn't sleep and the pain was unbearable. I tried everything again- stretches, creams, pain patches, etc. I finally fell into slumber at 6A.M. this morning.
I feel that the Gabapentin is working for the Fibromyalgia. Not a cure, but it's a definite improvement, but for the restless legs it is not. I am very frustrated. I never thought I would ever say that I would prefer the pain of Fibromyalgia to restless legs and arms. I think that is because the Fibromyalgia changes up- the pain is never the same or in the same place. With RLS it's like being tortured. Imagine how aggravating it is every morning when your alarm goes off. That's what restless legs is like, except instead of a blaring noise, you have blaring pain snapping you back to reality as you drift off into dreamland, not to mention that it doesn't go away during the day. Luckily I have a follow-up appointment on October 3rd, so I hope we can figure something out. I do notice when I take Hydrocodone it does help with the restless legs syndrome. I'm not entirely sure why. I don't have many of these pain pills. Doctors are so hesitant to prescribe them, as if we are junkies. It's absurd.
The bonus is that I have started going on daily walks again around the block. It's only half a mile, but it's a wonderful feeling to be able to move my body. There is pain involved, and the Fibromyalgia is complaining, but so far I have been able to tolerate it, and I hope it lasts. I have missed regular exercise so very much.
This picture is from tonight after the walk. I feel refreshed!
I hope all of you are having a great weekend!
P.S. If you haven't tried the pumpkin spice latte (decaf & soy) at Starbucks I would so recommend that you do. It's my new crush!
Then a few days ago I felt it... the dull, agonizing ache deep, deep in my arms. As I fell into sleep, there it went... jerk. My chest grew tight, the ache worsened until I had to get up.
The Gabapentin had stopped working.
I thought maybe it was a fluke so I upped my dosage the next day to three pills instead on one. This time I felt the ache in my legs and arms, and it felt like before I'd ever taken the medication... except 2x worse. The last two nights were horrible. I couldn't sleep and the pain was unbearable. I tried everything again- stretches, creams, pain patches, etc. I finally fell into slumber at 6A.M. this morning.
I feel that the Gabapentin is working for the Fibromyalgia. Not a cure, but it's a definite improvement, but for the restless legs it is not. I am very frustrated. I never thought I would ever say that I would prefer the pain of Fibromyalgia to restless legs and arms. I think that is because the Fibromyalgia changes up- the pain is never the same or in the same place. With RLS it's like being tortured. Imagine how aggravating it is every morning when your alarm goes off. That's what restless legs is like, except instead of a blaring noise, you have blaring pain snapping you back to reality as you drift off into dreamland, not to mention that it doesn't go away during the day. Luckily I have a follow-up appointment on October 3rd, so I hope we can figure something out. I do notice when I take Hydrocodone it does help with the restless legs syndrome. I'm not entirely sure why. I don't have many of these pain pills. Doctors are so hesitant to prescribe them, as if we are junkies. It's absurd.
The bonus is that I have started going on daily walks again around the block. It's only half a mile, but it's a wonderful feeling to be able to move my body. There is pain involved, and the Fibromyalgia is complaining, but so far I have been able to tolerate it, and I hope it lasts. I have missed regular exercise so very much.
This picture is from tonight after the walk. I feel refreshed!
I hope all of you are having a great weekend!
P.S. If you haven't tried the pumpkin spice latte (decaf & soy) at Starbucks I would so recommend that you do. It's my new crush!
Wednesday, September 19, 2012
Headache
The headaches are visiting again. The kind where even the eyeballs hurt. I've also got all over fatigue and weakness, and pain in various places. Same story, different day.
These patches help a tad bit, but truly I am just ready for bed.
Tomorrow is another day.
These patches help a tad bit, but truly I am just ready for bed.
Tomorrow is another day.
Sunday, September 16, 2012
Psalm 16
Keep me safe, my God,
for in you I take refuge.
I say to the Lord, “You are my Lord;
apart from you I have no good thing.”
I say of the holy people who are in the land,
“They are the noble ones in whom is all my delight.”
Those who run after other gods will suffer more and more.
I will not pour out libations of blood to such gods
or take up their names on my lips.
Lord, you alone are my portion and my cup;
you make my lot secure.
The boundary lines have fallen for me in pleasant places;
surely I have a delightful inheritance.
I will praise the Lord, who counsels me;
even at night my heart instructs me.
I keep my eyes always on the Lord.
With him at my right hand, I will not be shaken.
Therefore my heart is glad and my tongue rejoices;
my body also will rest secure,
because you will not abandon me to the realm of the dead,
nor will you let your faithful one see decay.
You make known to me the path of life;
you will fill me with joy in your presence,
with eternal pleasures at your right hand.
for in you I take refuge.
I say to the Lord, “You are my Lord;
apart from you I have no good thing.”
I say of the holy people who are in the land,
“They are the noble ones in whom is all my delight.”
Those who run after other gods will suffer more and more.
I will not pour out libations of blood to such gods
or take up their names on my lips.
Lord, you alone are my portion and my cup;
you make my lot secure.
The boundary lines have fallen for me in pleasant places;
surely I have a delightful inheritance.
I will praise the Lord, who counsels me;
even at night my heart instructs me.
I keep my eyes always on the Lord.
With him at my right hand, I will not be shaken.
Therefore my heart is glad and my tongue rejoices;
my body also will rest secure,
because you will not abandon me to the realm of the dead,
nor will you let your faithful one see decay.
You make known to me the path of life;
you will fill me with joy in your presence,
with eternal pleasures at your right hand.
Saturday, September 15, 2012
TENS Unit
Last year before I moved my ortho doctor gave me a TENS Unit to use on the cross country drive. For the life of me I could not figure out how to use it, so it has sat in my closet for over a year. After meeting someone the other week who uses one regularly I decided to take the old thing out of retirement. ;)
It feels pretty good. Imagine how sheepish I was tonight to realize how simple it was to hook up. I'll blame all the stress of the move for why it took me so long to understand it's function.
Information on a TENS Unit: http://www.livestrong.com/article/30015-tens-unit-work/
It feels pretty good. Imagine how sheepish I was tonight to realize how simple it was to hook up. I'll blame all the stress of the move for why it took me so long to understand it's function.
Information on a TENS Unit: http://www.livestrong.com/article/30015-tens-unit-work/
Over Time
Last night I was entirely loopy after taking my new medication. I have no idea what it is doing to my nervous system but whatever it is, it is strong! Aaron kept looking at me and laughing because my eyes kept rolling around and closing and I felt like I was intoxicated. The precious news is that I was able to sleep without the use of sleep aids, which is HUGE. For the last few years I have been unable to sleep without some kind of pill or cannabis. Even still, sometimes I have lain awake even with the help of sleep aids, but this new medication knocked me out. I might have woken up once or twice to use the bathroom but otherwise I was down for the count.
I'm not sure how I feel about it honestly. I started getting teary a bit as I was falling into slumber, because I do not relish the idea that I need so many pills just to function. I get these grand ideas sometimes, of chucking them all out and just not taking anything anymore. I have stopped taking certain ones that weren't really making much of a difference, but my attempts at stopping the important ones only bodes in chest pains or enhanced physical pain. It's quite frustrating. I am in my young adult years and I rely on these supplements to build up my weakened immune system, and these other pills to help combat the conditions I carry. Before I started taking the prescribed supplements I was getting sick with something new every week. Literally. Double eye infections, ear infections, numerous infections attacking my womanhood, colds, staph, etc. It was never-ending. And then I got treatment and whatever they put me on seemed to work.
I'm grateful to live in a country where I can receive medical care, even though at times it has been a dead end road and frustrating. I'm grateful for medication, I am, but I don't like the knowledge that I have to take them. It's a lot. And I really am not a fan of realizing that I will possibly have to take them for the rest of my life. I also don't like not knowing exactly what it is doing inside of my body. Everyone reacts differently to each pill and I am extremely sensitive to side effects now. Anti-anxiety medication worked for awhile and then I started getting really depressed and have rage attacks. Needless to say I stopped ingesting any pills from that family. So now, taking a pill that directly affects my nervous system makes me a bit uncomfortable. I held off on this kind of medication for a long time. In fact it was prescribed in 2010 but I never started it because I wanted to try to do everything as natural as possible. Now I am at the point where I can't ignore my need to at least try it. It's a double-edged sword. I already feel relief from restless legs and being able to sleep was priceless, but I have read that there can be weight gain, swelling of the hands, feet, and face, mood changes, and a plethora of other things. I pray, pray, pray that will not happen. I really do not like taking something that is directly altering my brain and my nervous system, but since that is my illness I don't see much other choice.
When I first got sick, I had this primary doctor and he was very nice....so open and available. He always answered my emails and seemed so very sincere about wanting to help me get answers. At that time I had a kidney infection and lower back pain. After an MRI and a bone scan I was told that I have the back of a 65 year old woman and would no longer be able to work with children. I was devastated. He sent me for physical therapy and when the girl told me to bend a certain way, I told her it hurt. She scoffed at me and told me I was not in pain. Yeah, that happened.
After I stopped working, I could no longer afford my health insurance and the doctor who had been so willing to help me figure out what was wrong literally told me that it was in my head. I went to see him after being up all night in severe pain and misery, throwing up and crying. When I got there I felt like I was on my way to death. He looked at me and told me that he had run all the tests and that he believed that I was unhappy and that when I came to see him I got happy. He basically told me I was faking it.
My heart was crushed. I had thought he was on my side. But he was the first doctor who told me that my very real pain was all in my head.
Over the years I saw doctor after doctor. As the skin on all of my fingers began to bubble and peel off so that I had to wear gauze on the bloody mess, as the pain got so severe that I couldn't do much at all anymore, as I got infection after infection, as I threw up for no reason at all, as I got so tired I could not keep my eyes open, as I bled from places people shouldn't bleed from, as I got urinary tract infections back to back, as I had diarrhea every single day, all day, as I got dizzy and overwhelmed easily, as I started to get numb in my fingers, as my knees buckled when I was walking, as the pain pretty much took over... I continued to believe the problem would be discovered and I would be fixed. That wasn't the case.
Instead, I encountered many doctors who were dismissive and few that actually took the time to help diagnose me. My diagnoses did not come all together, but instead spread out over the next 2 years until I finally learned all of my different conditions, and the main condition that was the most debilitating and the culprit of all of my daily pain and fatigue. I had so many examinations and tests. Prodded in places that never should be invaded. I had several out patient surgeries for my back, and some of those involved not even getting numbed when they stabbed the huge needle in me. I saw many emergency room doctors, an endocrinologist, a dermatologist, a pain management doctor, a GI doctor, an orthopedic doctor, and they even made me have a psych evaluation to make certain I am of sound mind and not just making all of this up. It took forever to see a rheumatologist because I had lost insurance and had to go through the county, and they put me on a wild goose chase, eventually telling me there were none in the surrounding areas who would see me. I ended up finding a Fibromyalgia Clinic online and got donations to be seen there. That was a godsend, as they tested me for viruses and actually validated my sickness. All of this happened while I had no income, and no ability to work. I was reapplying for food stamps and county insurance as soon as it was up. Many phone calls were made, and there were TOO many professional people who dismissed me and made me out to be a loony bin.
It was the most pressing, humiliating, humbling time of my life. There is no grace or dignity when you are bleeding, throwing up, breaking down. Nothing pleasant about being told they don't know what is wrong with you after having things shoved into you, and poked into you, and having so many different doctors and nurses see your most private parts like it is nothing.
I started to get night sweats, peed on myself a few times while sleeping, started skipping my periods, got super oily hair for awhile, started having skin issues like psoriasis and cherry agioma, my blood pressure started getting high, I got hives, benign cysts, my face got puffy... I could go on and on, and the truth is that it won't convey the hellish nightmare Fibromyalgia is.
We endure this, or some variation of this, on a daily basis. I have said before, and I will say it again, there is never a break. Now, I feel blessed to be at a point where I now have some answers and I know of my various illnesses that all work together to further destroy my immune system and nervous system, but it was a long, scary, maddening road to get to this place of medication and a certain equilibrium. Even knowing what I know, sometimes... well, a lot of the time... it is still very scary. There have been different seasons of sickness where I feel very dark and depressed, and other times when I feel very hopeful and determined to have a quality life. It just depends on what is going on in my brain at the time.
The point is this, this is not an easy road to travel. We start off not even knowing where we are going, or even that we are walking on a path, and pretty soon we are well on the trail and we can't turn back. Often times we continue to glance behind or stop and try to figure our how to turn around.... we long for what we knew before, we long for health. We may camp out at that spot for quite awhile because we believe that if we want it bad enough, we may wake up the next day and be off of the trail and back in the land of normalcy. Eventually we may realize that looking back doesn't work, and neither does standing still, so we trudge on because that is the only choice. A lot about who we are gets refined and purified and changed. We lose friends, family, jobs, security, and all of the things that we thought made us who we are. We change. Unwillingly at first, and then tentatively.
I can't say that we ever want to keep going on this trail, because I am still walking on mine. I can only say that walking on is the only thing to do. When the pain gets too much, when the dark thoughts come, when the will to keep living this way drags, we have to just keep walking. The sun will shine on the dark places, but we have to keep going even when it's pitch black and we can't even see where we are stepping. That isolation, that fear.... that is what propels us into being tenderized.
I cannot say I am glad to be sick. I'm not. What I can say is that after nearly 3 years (4 if we count the year before I got sick-sick with no rebound, which I kind of do because I was sick most of that year too) I am an emotional place where I can see how far I have come. I have forged this new life- complete with a cross country move, letting go of toxic relationships, embracing who I am now, and making life-long friendships with some amazing women. I have many moments of insecurity and comparison to the "heathies." I look in the mirror and don't always feel fondness for my reflection. I cry. I get down about my limitations. But that is the reality. That is the dark place. But when the sun comes out in my soul, I feel it all over my being. This sense of who I am now. This feeling of gratitude that I have come so far, and not on my own strength, but on the God who has never let me go, on the friends and family who have pushed me and encouraged me and supported me, on the other, immensely beautiful people going through this around the world.
My walk is not over. I still have a very long way to go, but I can say I am so grateful for this journey and I have discovered how to live again.
I'm not sure how I feel about it honestly. I started getting teary a bit as I was falling into slumber, because I do not relish the idea that I need so many pills just to function. I get these grand ideas sometimes, of chucking them all out and just not taking anything anymore. I have stopped taking certain ones that weren't really making much of a difference, but my attempts at stopping the important ones only bodes in chest pains or enhanced physical pain. It's quite frustrating. I am in my young adult years and I rely on these supplements to build up my weakened immune system, and these other pills to help combat the conditions I carry. Before I started taking the prescribed supplements I was getting sick with something new every week. Literally. Double eye infections, ear infections, numerous infections attacking my womanhood, colds, staph, etc. It was never-ending. And then I got treatment and whatever they put me on seemed to work.
I'm grateful to live in a country where I can receive medical care, even though at times it has been a dead end road and frustrating. I'm grateful for medication, I am, but I don't like the knowledge that I have to take them. It's a lot. And I really am not a fan of realizing that I will possibly have to take them for the rest of my life. I also don't like not knowing exactly what it is doing inside of my body. Everyone reacts differently to each pill and I am extremely sensitive to side effects now. Anti-anxiety medication worked for awhile and then I started getting really depressed and have rage attacks. Needless to say I stopped ingesting any pills from that family. So now, taking a pill that directly affects my nervous system makes me a bit uncomfortable. I held off on this kind of medication for a long time. In fact it was prescribed in 2010 but I never started it because I wanted to try to do everything as natural as possible. Now I am at the point where I can't ignore my need to at least try it. It's a double-edged sword. I already feel relief from restless legs and being able to sleep was priceless, but I have read that there can be weight gain, swelling of the hands, feet, and face, mood changes, and a plethora of other things. I pray, pray, pray that will not happen. I really do not like taking something that is directly altering my brain and my nervous system, but since that is my illness I don't see much other choice.
When I first got sick, I had this primary doctor and he was very nice....so open and available. He always answered my emails and seemed so very sincere about wanting to help me get answers. At that time I had a kidney infection and lower back pain. After an MRI and a bone scan I was told that I have the back of a 65 year old woman and would no longer be able to work with children. I was devastated. He sent me for physical therapy and when the girl told me to bend a certain way, I told her it hurt. She scoffed at me and told me I was not in pain. Yeah, that happened.
After I stopped working, I could no longer afford my health insurance and the doctor who had been so willing to help me figure out what was wrong literally told me that it was in my head. I went to see him after being up all night in severe pain and misery, throwing up and crying. When I got there I felt like I was on my way to death. He looked at me and told me that he had run all the tests and that he believed that I was unhappy and that when I came to see him I got happy. He basically told me I was faking it.
My heart was crushed. I had thought he was on my side. But he was the first doctor who told me that my very real pain was all in my head.
Over the years I saw doctor after doctor. As the skin on all of my fingers began to bubble and peel off so that I had to wear gauze on the bloody mess, as the pain got so severe that I couldn't do much at all anymore, as I got infection after infection, as I threw up for no reason at all, as I got so tired I could not keep my eyes open, as I bled from places people shouldn't bleed from, as I got urinary tract infections back to back, as I had diarrhea every single day, all day, as I got dizzy and overwhelmed easily, as I started to get numb in my fingers, as my knees buckled when I was walking, as the pain pretty much took over... I continued to believe the problem would be discovered and I would be fixed. That wasn't the case.
Instead, I encountered many doctors who were dismissive and few that actually took the time to help diagnose me. My diagnoses did not come all together, but instead spread out over the next 2 years until I finally learned all of my different conditions, and the main condition that was the most debilitating and the culprit of all of my daily pain and fatigue. I had so many examinations and tests. Prodded in places that never should be invaded. I had several out patient surgeries for my back, and some of those involved not even getting numbed when they stabbed the huge needle in me. I saw many emergency room doctors, an endocrinologist, a dermatologist, a pain management doctor, a GI doctor, an orthopedic doctor, and they even made me have a psych evaluation to make certain I am of sound mind and not just making all of this up. It took forever to see a rheumatologist because I had lost insurance and had to go through the county, and they put me on a wild goose chase, eventually telling me there were none in the surrounding areas who would see me. I ended up finding a Fibromyalgia Clinic online and got donations to be seen there. That was a godsend, as they tested me for viruses and actually validated my sickness. All of this happened while I had no income, and no ability to work. I was reapplying for food stamps and county insurance as soon as it was up. Many phone calls were made, and there were TOO many professional people who dismissed me and made me out to be a loony bin.
It was the most pressing, humiliating, humbling time of my life. There is no grace or dignity when you are bleeding, throwing up, breaking down. Nothing pleasant about being told they don't know what is wrong with you after having things shoved into you, and poked into you, and having so many different doctors and nurses see your most private parts like it is nothing.
I started to get night sweats, peed on myself a few times while sleeping, started skipping my periods, got super oily hair for awhile, started having skin issues like psoriasis and cherry agioma, my blood pressure started getting high, I got hives, benign cysts, my face got puffy... I could go on and on, and the truth is that it won't convey the hellish nightmare Fibromyalgia is.
We endure this, or some variation of this, on a daily basis. I have said before, and I will say it again, there is never a break. Now, I feel blessed to be at a point where I now have some answers and I know of my various illnesses that all work together to further destroy my immune system and nervous system, but it was a long, scary, maddening road to get to this place of medication and a certain equilibrium. Even knowing what I know, sometimes... well, a lot of the time... it is still very scary. There have been different seasons of sickness where I feel very dark and depressed, and other times when I feel very hopeful and determined to have a quality life. It just depends on what is going on in my brain at the time.
The point is this, this is not an easy road to travel. We start off not even knowing where we are going, or even that we are walking on a path, and pretty soon we are well on the trail and we can't turn back. Often times we continue to glance behind or stop and try to figure our how to turn around.... we long for what we knew before, we long for health. We may camp out at that spot for quite awhile because we believe that if we want it bad enough, we may wake up the next day and be off of the trail and back in the land of normalcy. Eventually we may realize that looking back doesn't work, and neither does standing still, so we trudge on because that is the only choice. A lot about who we are gets refined and purified and changed. We lose friends, family, jobs, security, and all of the things that we thought made us who we are. We change. Unwillingly at first, and then tentatively.
I can't say that we ever want to keep going on this trail, because I am still walking on mine. I can only say that walking on is the only thing to do. When the pain gets too much, when the dark thoughts come, when the will to keep living this way drags, we have to just keep walking. The sun will shine on the dark places, but we have to keep going even when it's pitch black and we can't even see where we are stepping. That isolation, that fear.... that is what propels us into being tenderized.
I cannot say I am glad to be sick. I'm not. What I can say is that after nearly 3 years (4 if we count the year before I got sick-sick with no rebound, which I kind of do because I was sick most of that year too) I am an emotional place where I can see how far I have come. I have forged this new life- complete with a cross country move, letting go of toxic relationships, embracing who I am now, and making life-long friendships with some amazing women. I have many moments of insecurity and comparison to the "heathies." I look in the mirror and don't always feel fondness for my reflection. I cry. I get down about my limitations. But that is the reality. That is the dark place. But when the sun comes out in my soul, I feel it all over my being. This sense of who I am now. This feeling of gratitude that I have come so far, and not on my own strength, but on the God who has never let me go, on the friends and family who have pushed me and encouraged me and supported me, on the other, immensely beautiful people going through this around the world.
My walk is not over. I still have a very long way to go, but I can say I am so grateful for this journey and I have discovered how to live again.
Friday, September 14, 2012
A Day in the Life
As I type this I am in agony. Okay, okay, those of us with chronic pain are near the breaking point almost everyday, but sometimes there are a series of days where it feels like torture.
About a month ago I started getting restless legs syndrome REALLY bad. It felt even worse then Fibromyalgia and that is saying A LOT. It's a part of the cocktail we inherit when we deal with this disease, but I had never experienced it to that level before. Every time I started to drift off to sleep.... TUG! BURN! It felt like my bones were in dire need of being stretched and pulled. Needless to say, I did not get any sleep. Then it started in my arms as well. There were brief interludes (usually in the very early hours of the day) where it seemed to calm down and I could catch a few hours of slumber, but eventually I started feeling the ache all day instead of just bedtime. Bedtime is by far the worst, but to feel the aching and cramping throughout the whole day was just insane. I couldn't sit Indian style, couldn't put any strain on them at all or the restlessness would respond straightaway.
I tried home remedies. Heating pads, over the counter medications, walking around the house, stretching.... but nothing was helping. After speaking with a pharmacist I realized I would probably need medication for this.
Yesterday I started Gabapentin. This medication was first prescribed to me in 2010 but I never took it. It is a cousin to Lyrica, which I just don't want to take. Because I am super sensitive to medications and tend to get emotional, depressed, and full of rage I just do not want to go through that ever again. However, the restless legs is so severe in a completely different way than Fibromyalgia and so I decided to give it a try. I'm not too excited about it. I already take dozens of pills throughout the day and adding yet another one is disappointing, but alas, I must do what needs to be done.
In addition I was also put on an antibiotic for an infection and after some lengthy discussion, my pain medication was refilled. Now, I can do without it but it DOES help. It's so frustrating because when we as patients, find out what medications work for us, they usually won't be prescribed because the doctors don't want us to be addicts. WE ARE NOT ADDICTS. If you have chronic pain, you benefit from pain medication. Isn't that what it's made for?! People who have pain do not become addicted. It has been studied and written about. I do not understand why we have to argue to be taken seriously. It's not some joy ride to pop pills and when we take a pain pill it's so that we can actually, you know, LIVE for a little bit, without feeling like we are dying.So last month was the first time in years that I was prescribed pain medication. I prefer what is natural, but as time goes on, I realize that maybe I have to be more open to what modern medicine has to offer.
Today I am in misery. My arms are hurting something fierce. I've had this issue before but never to this caliber. And in the past, whenever I had pain in my arms, it would disappear and play peek-a-boo just like the pain everywhere else. I had attributed this pain to the restless legs. I had read that it could spread to the arms and it seemed that is what had happened. Now I am not so sure. I just started the Gabapentin last night but already I feel relief in my legs. Like I said, I am super sensitive to medications. But my arms.... oh my gosh! They are hurting so bad. I couldn't open a package of crackers, they hurt when they are still, and they are cramping so very bad as I type this right now. It feels like someone is pulling them off of my body or burying them in bricks and cement. IT HURTS!
To add to that, I am experiencing supreme nausea. I think it is from the antibiotic, and it is purely awful.
I forced myself to go outside today and I made it to the next door neighbors mailbox before I had to come back inside. The breeze felt so good and I wanted to keep going, but my body has other plans for the day.
About a month ago I started getting restless legs syndrome REALLY bad. It felt even worse then Fibromyalgia and that is saying A LOT. It's a part of the cocktail we inherit when we deal with this disease, but I had never experienced it to that level before. Every time I started to drift off to sleep.... TUG! BURN! It felt like my bones were in dire need of being stretched and pulled. Needless to say, I did not get any sleep. Then it started in my arms as well. There were brief interludes (usually in the very early hours of the day) where it seemed to calm down and I could catch a few hours of slumber, but eventually I started feeling the ache all day instead of just bedtime. Bedtime is by far the worst, but to feel the aching and cramping throughout the whole day was just insane. I couldn't sit Indian style, couldn't put any strain on them at all or the restlessness would respond straightaway.
I tried home remedies. Heating pads, over the counter medications, walking around the house, stretching.... but nothing was helping. After speaking with a pharmacist I realized I would probably need medication for this.
Yesterday I started Gabapentin. This medication was first prescribed to me in 2010 but I never took it. It is a cousin to Lyrica, which I just don't want to take. Because I am super sensitive to medications and tend to get emotional, depressed, and full of rage I just do not want to go through that ever again. However, the restless legs is so severe in a completely different way than Fibromyalgia and so I decided to give it a try. I'm not too excited about it. I already take dozens of pills throughout the day and adding yet another one is disappointing, but alas, I must do what needs to be done.
In addition I was also put on an antibiotic for an infection and after some lengthy discussion, my pain medication was refilled. Now, I can do without it but it DOES help. It's so frustrating because when we as patients, find out what medications work for us, they usually won't be prescribed because the doctors don't want us to be addicts. WE ARE NOT ADDICTS. If you have chronic pain, you benefit from pain medication. Isn't that what it's made for?! People who have pain do not become addicted. It has been studied and written about. I do not understand why we have to argue to be taken seriously. It's not some joy ride to pop pills and when we take a pain pill it's so that we can actually, you know, LIVE for a little bit, without feeling like we are dying.So last month was the first time in years that I was prescribed pain medication. I prefer what is natural, but as time goes on, I realize that maybe I have to be more open to what modern medicine has to offer.
Today I am in misery. My arms are hurting something fierce. I've had this issue before but never to this caliber. And in the past, whenever I had pain in my arms, it would disappear and play peek-a-boo just like the pain everywhere else. I had attributed this pain to the restless legs. I had read that it could spread to the arms and it seemed that is what had happened. Now I am not so sure. I just started the Gabapentin last night but already I feel relief in my legs. Like I said, I am super sensitive to medications. But my arms.... oh my gosh! They are hurting so bad. I couldn't open a package of crackers, they hurt when they are still, and they are cramping so very bad as I type this right now. It feels like someone is pulling them off of my body or burying them in bricks and cement. IT HURTS!
To add to that, I am experiencing supreme nausea. I think it is from the antibiotic, and it is purely awful.
I forced myself to go outside today and I made it to the next door neighbors mailbox before I had to come back inside. The breeze felt so good and I wanted to keep going, but my body has other plans for the day.
Tuesday, September 11, 2012
What Fibro Looks Like
Flare of flares. Between the Medicaid hearing, restless arms and legs for days, and going out more than my one allotted time per week, I am in a hellish state. Eyes glazed, skin hurting to the touch like a bad sunburn, fatigue overwhelming, feet aching.
It was lovely to meet fellow Fibro warriors, but that meant conversation and listening and more overload for an already overwhelmed nervous system.
It was nice to be able to go out with my mom a couple of times, but that meant walking and movement and being out in the real world.
It was necessary to go to the Medicaid hearing, but that was a half hour of answering questions and paying attention and losing my train of thought, and trying to convey my legitimate disabilities.
So now, even after a full night of slumber, my body has decided to go on strike. Which means everything is ten times more amped up- my nervous system is fried and I can no longer shuffle my way through the day pretending I am a normal.
This is the reality of Fibromyalgia.
It was lovely to meet fellow Fibro warriors, but that meant conversation and listening and more overload for an already overwhelmed nervous system.
It was nice to be able to go out with my mom a couple of times, but that meant walking and movement and being out in the real world.
It was necessary to go to the Medicaid hearing, but that was a half hour of answering questions and paying attention and losing my train of thought, and trying to convey my legitimate disabilities.
So now, even after a full night of slumber, my body has decided to go on strike. Which means everything is ten times more amped up- my nervous system is fried and I can no longer shuffle my way through the day pretending I am a normal.
This is the reality of Fibromyalgia.
Saturday, September 8, 2012
I Hurt Like Hell
The blog title is the name of a book by Annette L. Jackson. Today I had the pleasure of meeting Annette and two other wonderful women who are passionate about spreading Fibromyalgia Awareness. This is an amazing read simply for the fact that Annette is not some doctor or professional who throws out tip after tip withou going through what we go through every single day. No, Annette has Fibromyalgia and so reading her book feels like talking with a friend about the struggles and the reality that we face as Fibromyalgia sufferers. I encourage you to order her book, whether by hard copy or for your Kindle or Nook. If you are on Facebook, you can get connected here:
http://www.facebook.com/AnnetteJacksonFibro
It was an immense pleasure to meet these ladies. I'm sure we can all agree that there is nothing better then getting connected with others who are fighting our fight with us.
And I won a beautiful gift basket as well!
http://www.facebook.com/AnnetteJacksonFibro
It was an immense pleasure to meet these ladies. I'm sure we can all agree that there is nothing better then getting connected with others who are fighting our fight with us.
And I won a beautiful gift basket as well!
Friday, August 10, 2012
How to Stop Letting Others Define Who You Are With Fibromyalgia~By Mary Ellen Telesha
One of the challenges of fibromyalgia is the frustrating feeling that family, friends and the medical community just don't understand. When we're already contending with the physical pain and chronic fatigue of fibromyalgia, having a negative experience can trigger painful emotions or worse, be the last straw that pushes us into a flare.
Peace of mind is a priority for fibromyalgia sufferers, and an important step in finding that peace is letting go of what other people think. Here's some things that have helped me in my own journey with fibromyalgia
1. Today, right now, resolve to stop taking opinions about you and your diagnosis of fibromyalgia personally. There will always be people set in their opinions who do not understand your struggle with fibromyalgia. The secret to dealing with the misinformed, ignorant or insensitive is to realize that what goes on in their minds is their own business and is no reflection on you. The only business we ever have control over is our own business, so make it your business to feel as good as you possibly can, in spite of outside opinions. When your gut tells you someone is not getting it, don't waste precious mental and emotional energy trying to wrangle them on to your side. Know they have their own hidden insecurities, fear and doubt that colors their opinions and try to look for the good intentions in people. Many are just uneducated, not having been driven by need and frustration to spend hours researching fibromyalgia.
2. Take number one a step further and ignore opinions about you and fibromyalgia. Do they really have an opinion about you? Probably. Maybe. Maybe not. So what? Don't let what other people think, or what you are just guessing they think, dictate how you feel about yourself. In the relative big picture of life, what does it mean that someone isn't giving you a fair assessment? Where does that truly have an impact on you in this moment, except in your mind? What would if feel like if you were free from worry about what people think? This freeing attitude is available the second we let go of the thought that another person's opinion of us matters.
3. When the limitations of fibromyalgia affect you there will be people who will drop out of your life. Martha Beck PhD, Life Coach, and author of Finding Your Own North Star describes this as the Empty Elevator. When you change, people will inevitably get off the elevator of your life, and you may feel alone for a while. There is a hidden blessing weeding the energy suckers, nay-sayers and negative people out of your life. With their leaving they open up space for truly compassionate, supportive loving friends and family.
4. Become a truth teller. While it may not be your job to educate or change someones opinion about fibromyalgia, it's important that people hear real stories about this condition told without shame. Tell the truth and stop making excuses when you say no to social events, or have to cut your time short.This doesn't have to be a long story or an attempt at getting sympathy, rather it's an act of intimacy to reveal your authentic self. Without defensiveness say, "I would love to (insert event) but because of the increased fatigue/pain/muscle weakness I've been experiencing with fibromyalgia lately it's better for me to stay home, rest and take care of my body." When someone asks you to explain fibromyalgia, share a quick, concise description: "Current research points to fibromyalgia as being a central nervous system dysfunction that causes global pain, extreme fatigue, muscle weakness and other symptoms that make normal functioning difficult. I'm managing the best I can with rest/meds/ therapy, thanks for asking." More than your illness, your calm and poise will be the impression remembered. Honoring yourself teaches others how to treat you, and avoids the nervous energy people will sense when you try to conceal what is really happening.
5. Ditch the drama. A high percentage of us diagnosed with fibromyalgia also have a history of childhood stress. Unless your whole family has been through intensive recovery, chances are you are still dealing with stressful dysfunctional family patterns that were ground zero for developing fibromyalgia. When a family member learns that you will stick to firm boundaries and respect yourself, there will be less of the tiring energetic push and pull against you. Stay centered and grounded in your own peaceful energy and find ways to detach from drama.
6. Practice selfishness. Many fibromyalgia sufferers, including myself, learned from childhood to take care of everyone's needs and ignore our own. We learned to put our emotional, physical and spiritual needs on the back burner to keep the peace, and taught to feel guilty about our own needs. Guilt is a signpost pointing to the very area in your life where you need to give yourself permission to put yourself first. Give yourself permission to say NO to anything that makes you feel worse and if something is important to your well-being, make it a priority. Truly selfish people never feel guilt!
7. Ask for help. Another common personality trait of fibromyalgia sufferers is an almost self-destructive sense of independence. Their "past lives" include being identified as the one to do everything, help everyone, and do it all by themselves. (Sound familiar?) Asking for what you need is a sign of strength, not weakness. You may be denying another human being an opportunity to learn their own depth of love, compassion and strength when you deny them the chance to help you. Instead of having to be strong and hold it together, let people close to you support you in your humanness.
By knowing that the only opinion about us that truly matters is our own, we develop the gifts of peace, self-love and self-worth. These are much needed valuable gifts we can give of ourselves in spite any physical conditions!
Mary Ellen Telesha is a Certified Martha Beck Life Coach.
One of the challenges of fibromyalgia is the frustrating feeling that family, friends and the medical community just don't understand. When we're already contending with the physical pain and chronic fatigue of fibromyalgia, having a negative experience can trigger painful emotions or worse, be the last straw that pushes us into a flare.
Peace of mind is a priority for fibromyalgia sufferers, and an important step in finding that peace is letting go of what other people think. Here's some things that have helped me in my own journey with fibromyalgia
1. Today, right now, resolve to stop taking opinions about you and your diagnosis of fibromyalgia personally. There will always be people set in their opinions who do not understand your struggle with fibromyalgia. The secret to dealing with the misinformed, ignorant or insensitive is to realize that what goes on in their minds is their own business and is no reflection on you. The only business we ever have control over is our own business, so make it your business to feel as good as you possibly can, in spite of outside opinions. When your gut tells you someone is not getting it, don't waste precious mental and emotional energy trying to wrangle them on to your side. Know they have their own hidden insecurities, fear and doubt that colors their opinions and try to look for the good intentions in people. Many are just uneducated, not having been driven by need and frustration to spend hours researching fibromyalgia.
2. Take number one a step further and ignore opinions about you and fibromyalgia. Do they really have an opinion about you? Probably. Maybe. Maybe not. So what? Don't let what other people think, or what you are just guessing they think, dictate how you feel about yourself. In the relative big picture of life, what does it mean that someone isn't giving you a fair assessment? Where does that truly have an impact on you in this moment, except in your mind? What would if feel like if you were free from worry about what people think? This freeing attitude is available the second we let go of the thought that another person's opinion of us matters.
3. When the limitations of fibromyalgia affect you there will be people who will drop out of your life. Martha Beck PhD, Life Coach, and author of Finding Your Own North Star describes this as the Empty Elevator. When you change, people will inevitably get off the elevator of your life, and you may feel alone for a while. There is a hidden blessing weeding the energy suckers, nay-sayers and negative people out of your life. With their leaving they open up space for truly compassionate, supportive loving friends and family.
4. Become a truth teller. While it may not be your job to educate or change someones opinion about fibromyalgia, it's important that people hear real stories about this condition told without shame. Tell the truth and stop making excuses when you say no to social events, or have to cut your time short.This doesn't have to be a long story or an attempt at getting sympathy, rather it's an act of intimacy to reveal your authentic self. Without defensiveness say, "I would love to (insert event) but because of the increased fatigue/pain/muscle weakness I've been experiencing with fibromyalgia lately it's better for me to stay home, rest and take care of my body." When someone asks you to explain fibromyalgia, share a quick, concise description: "Current research points to fibromyalgia as being a central nervous system dysfunction that causes global pain, extreme fatigue, muscle weakness and other symptoms that make normal functioning difficult. I'm managing the best I can with rest/meds/ therapy, thanks for asking." More than your illness, your calm and poise will be the impression remembered. Honoring yourself teaches others how to treat you, and avoids the nervous energy people will sense when you try to conceal what is really happening.
5. Ditch the drama. A high percentage of us diagnosed with fibromyalgia also have a history of childhood stress. Unless your whole family has been through intensive recovery, chances are you are still dealing with stressful dysfunctional family patterns that were ground zero for developing fibromyalgia. When a family member learns that you will stick to firm boundaries and respect yourself, there will be less of the tiring energetic push and pull against you. Stay centered and grounded in your own peaceful energy and find ways to detach from drama.
6. Practice selfishness. Many fibromyalgia sufferers, including myself, learned from childhood to take care of everyone's needs and ignore our own. We learned to put our emotional, physical and spiritual needs on the back burner to keep the peace, and taught to feel guilty about our own needs. Guilt is a signpost pointing to the very area in your life where you need to give yourself permission to put yourself first. Give yourself permission to say NO to anything that makes you feel worse and if something is important to your well-being, make it a priority. Truly selfish people never feel guilt!
7. Ask for help. Another common personality trait of fibromyalgia sufferers is an almost self-destructive sense of independence. Their "past lives" include being identified as the one to do everything, help everyone, and do it all by themselves. (Sound familiar?) Asking for what you need is a sign of strength, not weakness. You may be denying another human being an opportunity to learn their own depth of love, compassion and strength when you deny them the chance to help you. Instead of having to be strong and hold it together, let people close to you support you in your humanness.
By knowing that the only opinion about us that truly matters is our own, we develop the gifts of peace, self-love and self-worth. These are much needed valuable gifts we can give of ourselves in spite any physical conditions!
Mary Ellen Telesha is a Certified Martha Beck Life Coach.
Sunday, August 5, 2012
Update
Quick Update:
-I have finally been able to see a doctor (well nurse, but hey, it's something!) after almost a year being untreated on a regular basis. Got some current blood work done, prescriptions refilled, started on a new anti anxiety medication called Buspar which basically just made me angry and depressed like the Xanax did. I don't need an anti anxiety med as the anxiety has subsided greatly in recent months. I also got a referral to a Rheumatologist but that will cost a bit. I was blessed beyond measure to see a nurse twice for free through the county. It took months to get an appointment as they had told me that they were not accepting new patients before. I left a note for someone at the YMCA for a possible scholarship so I can use their pool for exercise. I haven't heard back on that yet. Got Provera to induce my menses since it has been 9 months without! Had a pap done right than also which was a HUGE blessing!
-My uncle was living with us for a month after he got into a bad car accident. He has since returned to his home and we are resuming normal schedule here.
-The weather has been fun and incredible. The warmth massaging sore muscles and the rain always my absolute favorite. :)
-I fell off the wagon with sugar. It happened during my California trip. As those who deal with candida know so well, one taste of sugar and it's all over. Suddenly sugar is ALL you want, even when you are not hungry, even when it feels like you will be sick from all you've eaten.... the candida takes over and creates the NEED to be consuming sugar and starches until your belly feels like it will literally explode. It's horrid. Truly. So now I was able to get a refill on Nystatin and start over. I feel like I have been given a second chance with this medication and I don't want to fall off course. I honestly do feel better when I am eating greens and the healthy stuff. It takes us Fibro warriors out of the hibernation (as said by the Fibro clinic) we are in with our sickness. Our bodies shut down with all of the processed foods and whatnot, but when we eat what is leafy and from the earth, we start to feel a bit better. This is a CONSTANT challenge. When you never feel good, EVER, you don't want to worry about diet. Heck no! You want comfort food and it's a mad cycle that repeats. It takes diligence and to be 100% real, Fibro is not exactly a convenient illness. ;)
-Been having sporadic nightmares again. I haven't had them as bad as I used to years ago, but last night was by far one of the worst. I don't want to glorify it, so I won't talk about it, but I am clinging to some familiar verses about sleeping in safety. The enemy is prowling around, trying to get in at me through old, used tactics, and I can recognize his attempts. He is so stupid that way. Aim for the same places he has hit at us before. Thankful for a big God who is over the darkness that comes through demonic movie previews, tasteless reads, and imagination run wild.
-Mylie's 6th birthday is next week. This will be the first time since she has been born that I will not be with her on her actual birthday, and at her birthday party. We are a bit bummed about that, she and I, but being able to Facetime, Tango, and talk regularly helps. I plan to get a cupcake and candle and have her pretend to blow it out (via Tango) after we sing Happy Birthday!
-Pain medication is always my last resort. Since leaving California last August I haven't had a prescription for pain meds until now. I prefer to take them only when necessary, as they create nausea and headaches. I'm so super sensitive to them which is frustrating. I REFUSE to try Lyrica or Cymbalta or any of that. I have some friends who do fine on it, and others who have horrific experiences. For me, because I am so hyper sensitive to medications, I would prefer to stay as natural as possible. There are medications I do need to take, but I try to mess around with what is necessary.... that is, those I feel make a difference in my quality of living and those that can be dumped. Lyrica has too many side effects as well as the potential to create thoughts of suicide and depression. And although I toyed with the idea of trying anti-depressants, I just don't need them. I'm NOT depressed. As stated by a doctor and as felt by ME. I have depressed moments, but I think that is life and I know that with illness, it will come around a time or two or five, but for me personally, I would rather stay off of anti-depressants for now. I am glad that those medications do exist for those who can handle them and who actually benefit from them. There should be no shame whatsoever in medicating when it is needed.
-I've been re-watching Lost and I love it just the same as I used to, if not more! Good to be back on the island. ;)
That's it for now.
xoxo
-I have finally been able to see a doctor (well nurse, but hey, it's something!) after almost a year being untreated on a regular basis. Got some current blood work done, prescriptions refilled, started on a new anti anxiety medication called Buspar which basically just made me angry and depressed like the Xanax did. I don't need an anti anxiety med as the anxiety has subsided greatly in recent months. I also got a referral to a Rheumatologist but that will cost a bit. I was blessed beyond measure to see a nurse twice for free through the county. It took months to get an appointment as they had told me that they were not accepting new patients before. I left a note for someone at the YMCA for a possible scholarship so I can use their pool for exercise. I haven't heard back on that yet. Got Provera to induce my menses since it has been 9 months without! Had a pap done right than also which was a HUGE blessing!
-My uncle was living with us for a month after he got into a bad car accident. He has since returned to his home and we are resuming normal schedule here.
-The weather has been fun and incredible. The warmth massaging sore muscles and the rain always my absolute favorite. :)
-I fell off the wagon with sugar. It happened during my California trip. As those who deal with candida know so well, one taste of sugar and it's all over. Suddenly sugar is ALL you want, even when you are not hungry, even when it feels like you will be sick from all you've eaten.... the candida takes over and creates the NEED to be consuming sugar and starches until your belly feels like it will literally explode. It's horrid. Truly. So now I was able to get a refill on Nystatin and start over. I feel like I have been given a second chance with this medication and I don't want to fall off course. I honestly do feel better when I am eating greens and the healthy stuff. It takes us Fibro warriors out of the hibernation (as said by the Fibro clinic) we are in with our sickness. Our bodies shut down with all of the processed foods and whatnot, but when we eat what is leafy and from the earth, we start to feel a bit better. This is a CONSTANT challenge. When you never feel good, EVER, you don't want to worry about diet. Heck no! You want comfort food and it's a mad cycle that repeats. It takes diligence and to be 100% real, Fibro is not exactly a convenient illness. ;)
-Been having sporadic nightmares again. I haven't had them as bad as I used to years ago, but last night was by far one of the worst. I don't want to glorify it, so I won't talk about it, but I am clinging to some familiar verses about sleeping in safety. The enemy is prowling around, trying to get in at me through old, used tactics, and I can recognize his attempts. He is so stupid that way. Aim for the same places he has hit at us before. Thankful for a big God who is over the darkness that comes through demonic movie previews, tasteless reads, and imagination run wild.
-Mylie's 6th birthday is next week. This will be the first time since she has been born that I will not be with her on her actual birthday, and at her birthday party. We are a bit bummed about that, she and I, but being able to Facetime, Tango, and talk regularly helps. I plan to get a cupcake and candle and have her pretend to blow it out (via Tango) after we sing Happy Birthday!
-Pain medication is always my last resort. Since leaving California last August I haven't had a prescription for pain meds until now. I prefer to take them only when necessary, as they create nausea and headaches. I'm so super sensitive to them which is frustrating. I REFUSE to try Lyrica or Cymbalta or any of that. I have some friends who do fine on it, and others who have horrific experiences. For me, because I am so hyper sensitive to medications, I would prefer to stay as natural as possible. There are medications I do need to take, but I try to mess around with what is necessary.... that is, those I feel make a difference in my quality of living and those that can be dumped. Lyrica has too many side effects as well as the potential to create thoughts of suicide and depression. And although I toyed with the idea of trying anti-depressants, I just don't need them. I'm NOT depressed. As stated by a doctor and as felt by ME. I have depressed moments, but I think that is life and I know that with illness, it will come around a time or two or five, but for me personally, I would rather stay off of anti-depressants for now. I am glad that those medications do exist for those who can handle them and who actually benefit from them. There should be no shame whatsoever in medicating when it is needed.
-I've been re-watching Lost and I love it just the same as I used to, if not more! Good to be back on the island. ;)
That's it for now.
xoxo
Saturday, July 21, 2012
Invisible
If Fibromyalgia wasn't invisible you would see...
Hot electric currents of pain running throughout my body. Meeting, blending, touching like red hot cords strung like ropes, criss crossing at the small of my back, the shoulder blades, the legs, everywhere. You would see how the elbows stab when I prop my head in my hands while attempting to lean on a table, the way the bone seems to grind into the soft flesh of the leg. You would see the fire that spreads and stops and spreads again. Arches of feet and inner thighs aching and stabbing and pulling.
If Fibromyalgia wasn't invisible you would see the fatigue stretch heavy over limbs, coating the eyes and causing the world to blur and shift together. You would see that cloud planted in my brain, covering, pulling like a cloak until I cannot think straight.
You would see the exhaustion seep slowly over each muscle, each ligament. Instead of me saying I am so tired, you would be able to watch as my body is taken over and all I can do is lay here with no energy to even go to the bathroom.
If Fibromyalgia wasn't invisible you would stop judging me. You would stop comparing your ailment with mine. You would stop expecting so much. You would see exactly how much it hurts and takes away from me and you would watch me smile and fold the laundry and walk through the house with that pulsing, alive sickness always thrumming inside of me.
You would stop doubting me. You would realize that I don't want this and you would see how very hard I push against it and how it's not something you can just pretend is not real. You would witness my defeat as I learn that again and again.
If Fibromyalgia wan't invisible you would see the reality of it. It would stop being some weird thing you heard about and become real. You would see that the Lyrica commercials are not accurate and you would stop trying to fix me.
If Fibromyalgia wan't invisible....
Hot electric currents of pain running throughout my body. Meeting, blending, touching like red hot cords strung like ropes, criss crossing at the small of my back, the shoulder blades, the legs, everywhere. You would see how the elbows stab when I prop my head in my hands while attempting to lean on a table, the way the bone seems to grind into the soft flesh of the leg. You would see the fire that spreads and stops and spreads again. Arches of feet and inner thighs aching and stabbing and pulling.
If Fibromyalgia wasn't invisible you would see the fatigue stretch heavy over limbs, coating the eyes and causing the world to blur and shift together. You would see that cloud planted in my brain, covering, pulling like a cloak until I cannot think straight.
You would see the exhaustion seep slowly over each muscle, each ligament. Instead of me saying I am so tired, you would be able to watch as my body is taken over and all I can do is lay here with no energy to even go to the bathroom.
If Fibromyalgia wasn't invisible you would stop judging me. You would stop comparing your ailment with mine. You would stop expecting so much. You would see exactly how much it hurts and takes away from me and you would watch me smile and fold the laundry and walk through the house with that pulsing, alive sickness always thrumming inside of me.
You would stop doubting me. You would realize that I don't want this and you would see how very hard I push against it and how it's not something you can just pretend is not real. You would witness my defeat as I learn that again and again.
If Fibromyalgia wan't invisible you would see the reality of it. It would stop being some weird thing you heard about and become real. You would see that the Lyrica commercials are not accurate and you would stop trying to fix me.
If Fibromyalgia wan't invisible....
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