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
Saturday, November 17, 2012
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.
Subscribe to:
Posts (Atom)