A sweet friend sent me this amazing read. A lot of the information is affirmative of what my doctor has said, so that's pretty awesome that it correlates. I'm eager to resume the diet I started back in March to help manage fibromyalgia and to get my immune system stronger. I was really stressed before the move and when I arrived here I kind of went on a bender with all things sugar (except for my beloved Snickers, of which I have gone without for 6 and a half months) as my body collapsed and finally all of the pain (thought forgotten while on the road) came crashing all at once as the adrenaline fueling faux energy let out like a deflating air mattress.
On another note I did go for 2 short walks last week. I cannot recall if I wrote that in a previous post. I'm all over the place right now. Tired after a day of grocery shopping. I was wheeling by an old man today in the motorized cart when he leaned over, put his hand on top of mine, and said, "don't get too wild on that thing." It was said so sweetly that it instantly made the day brighter. I like talking to random strangers.
I've been indulging in television lately, but at the same time I feel more connected to Abba then I have in awhile. There is something about being alone in the soul for a season that really opens up the heart to be in pursuit of Jesus. I find Him drawing me unto Himself at all times no matter what task I may be doing. I have missed that. I think I may be coming around a corner with this dark night of my soul. It's still a process and my outlook about my life changes with the amount of pain I am in, but I don't feel that dreariness that clung to me every second in the bleakest times.
I am very blessed. I have food to eat every day and a place to rest at night. I have had a lot of pain, yet I have also had equal parts happiness for 31 years here on earth. I know much and I know little. I love that life is constantly an opportunity to grow, to change, to expand who you really are. People are trite when they say "each day is a gift." It really is a gift. There is wonder to be found in everything that surrounds us. I love that a relationship with Jesus is never finished and that every time I think I have reached the epitome of being in communion with Him, He brings me to a deeper level of Himself that I didn't know existed. It is the most exciting thing to feel God.
I pray I never stop asking for more. That I would never get puffed up on spiritual fat. I pray that I would seek the simplicity and delight of simply drawing onto the character and mercy of Jesus. And when I fail I pray I would repent, get back up, and keep pressing in.
My life is not about me and my comforts. My life is about Jesus and what He wants to accomplish through me during my life span. I wait for the next season, Lord. I feel it coming... a whisper in the breathings of each new day.
I wait.
Friday, September 16, 2011
"Are you willing to be obscure? God will use failure in your life to break down that strong desire in your heart to see your name in lights. And when he finally breaks you of that lust for recognition, He may place you before the lights like you could never have imagined. But then it won't matter. You won't care if you're prime time or small time, center stage or backstage, leading the charge or cooking the food. You're just part of the King's army. People of selfless dedication are mainly available. That's plenty!"
-Charles R. Swindoll
-Charles R. Swindoll
Tuesday, September 13, 2011
"Hi....My name is Fibromyalgia, and I'm an Invisible Chronic Illness. I am now velcroed to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause severe pain or, if I'm in a good mood, I can just cause you to ache or burn all over.
Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now! I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh, yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away, too. You didn't ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I'm here to stay!
I hear you're going to see a doctor who can get rid of me. I'm rolling on the floor, laughing. Just try. You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day.
Your family, friends and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of they will say things like "Oh, you are just having a bad day" or "Well, remember, you can't do the things you use to do 20 YEARS ago", not hearing that you said 20 DAYS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a "Normal" person, and can't remember what you were going to say next!
In closing, (I was hoping that I kept this part a secret), but I guess you already found out...the ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia"
-as posted by Torill on Facebook.
Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now! I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh, yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away, too. You didn't ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I'm here to stay!
I hear you're going to see a doctor who can get rid of me. I'm rolling on the floor, laughing. Just try. You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day.
Your family, friends and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of they will say things like "Oh, you are just having a bad day" or "Well, remember, you can't do the things you use to do 20 YEARS ago", not hearing that you said 20 DAYS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a "Normal" person, and can't remember what you were going to say next!
In closing, (I was hoping that I kept this part a secret), but I guess you already found out...the ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia"
-as posted by Torill on Facebook.
Monday, September 12, 2011
Dear Jesus
From 09/11/11
Dear Jesus,
Today I woke up only about 2% better then yesterday and I cling to that 2%. It's better then being at 1%. I want to feel well enough to check out that church soon. Oh Lord, it's been awhile since I've been absolutely silent before you. My thoughts seem to be on a constant spin cycle. I average between wanting to befriend everyone and wanting to fade into oblivion. It seems impossible to stay as the character I've been aged to. This person who only DOES and rarely receives (unless we're talking parents, because I think mine take the cake at supporting me). It's not that I want to be selfish. Quite opposite in fact. I want to be selfless, but have good enough boundaries so that I'm not consistently feeling run over. Before fibromyalgia I just dealt with it, but now here in North Carolina, I find myself repelling at the idea of continuing that lifestyle.
I see all of your blessings and while the last weeks have mostly become a blur, I remember things. How my parents welcomed us. The flowers, the candle, the magazines placed just so in the bedroom with the freshly shampooed rug. The fact that my parents go outside to smoke. Every small thing I see and appreciate. Thank you, Jesus.
I ache for you. I remember what felt like "the height" of being in a relationship with you. Purity, the Philippines, ministry, being an "example" for the younger generation. I laugh at myself now for thinking I had everything figured out. I pray earnestly that that was NOT my highlight reel. Let that be but a taste of what is to come with you, oh Lord. I miss being in your house (any of them!) and I miss fellowship.The kind I used to take for granted before fibromyalgia. Coffee dates, prayer nights, Bible studies, corporate prayer, etc. The whole lot of it. I feel alone spiritually and I have for a a long time. Ever since 2009 I've been adrift and wandering through some forest, always aware of You, knowing Your hand is at work, but not seeing a break in the path.
And now... that break has come and I stepped onto it not certain where it would lead. It led me to here and now, Lord, please shine in me. Take Janet out and put Jesus in. Grow my strength, compassion, and trust. Grow my ability to handle life- strife, illness, and all that comes along with it. Let me see more then fibromyalgia. Let me be brave. Not on my own strength, but on Yours. Where my bones and spirit are weary please come shine again. Show me hope refreshed.
Sometimes worshiping and dancing with Jesus in the bathroom is deeper then attending a church service.
Lord, I see YOU. I look at the reflection of these eyes I've had for 31 years of earthly life and I realize all over again how you have chosen me and you have created my whole life. Not just the good bits, but every single detail. Truly you know every hair on my head. Every strand. You suited ME with this frail body because you trust me to still choose you over my hardship. Where I am weak, you make me strong.
Dear Jesus,
Today I woke up only about 2% better then yesterday and I cling to that 2%. It's better then being at 1%. I want to feel well enough to check out that church soon. Oh Lord, it's been awhile since I've been absolutely silent before you. My thoughts seem to be on a constant spin cycle. I average between wanting to befriend everyone and wanting to fade into oblivion. It seems impossible to stay as the character I've been aged to. This person who only DOES and rarely receives (unless we're talking parents, because I think mine take the cake at supporting me). It's not that I want to be selfish. Quite opposite in fact. I want to be selfless, but have good enough boundaries so that I'm not consistently feeling run over. Before fibromyalgia I just dealt with it, but now here in North Carolina, I find myself repelling at the idea of continuing that lifestyle.
I see all of your blessings and while the last weeks have mostly become a blur, I remember things. How my parents welcomed us. The flowers, the candle, the magazines placed just so in the bedroom with the freshly shampooed rug. The fact that my parents go outside to smoke. Every small thing I see and appreciate. Thank you, Jesus.
I ache for you. I remember what felt like "the height" of being in a relationship with you. Purity, the Philippines, ministry, being an "example" for the younger generation. I laugh at myself now for thinking I had everything figured out. I pray earnestly that that was NOT my highlight reel. Let that be but a taste of what is to come with you, oh Lord. I miss being in your house (any of them!) and I miss fellowship.The kind I used to take for granted before fibromyalgia. Coffee dates, prayer nights, Bible studies, corporate prayer, etc. The whole lot of it. I feel alone spiritually and I have for a a long time. Ever since 2009 I've been adrift and wandering through some forest, always aware of You, knowing Your hand is at work, but not seeing a break in the path.
And now... that break has come and I stepped onto it not certain where it would lead. It led me to here and now, Lord, please shine in me. Take Janet out and put Jesus in. Grow my strength, compassion, and trust. Grow my ability to handle life- strife, illness, and all that comes along with it. Let me see more then fibromyalgia. Let me be brave. Not on my own strength, but on Yours. Where my bones and spirit are weary please come shine again. Show me hope refreshed.
Sometimes worshiping and dancing with Jesus in the bathroom is deeper then attending a church service.
Lord, I see YOU. I look at the reflection of these eyes I've had for 31 years of earthly life and I realize all over again how you have chosen me and you have created my whole life. Not just the good bits, but every single detail. Truly you know every hair on my head. Every strand. You suited ME with this frail body because you trust me to still choose you over my hardship. Where I am weak, you make me strong.
This was from 09/10/11
Wake up.
Stumble into the bathroom, brush teeth, put in contacts, use the toilet, check text messages.
Go back into the bedroom,sit on unmade made, get out morning pills (even though it is now afternoon and even after at least 12 hours of sleep there is no rest), and sit for literally one hour trying to summon enough energy to swallow said pills.
Feel absolutely terrible and the idea of making the bed, plugging in the cell phone to charge, and taking a shower seem to be impossible tasks.
Want to cry, or scream, or show something to display the anger and helplessness of not being able to move when you want to move.
The night before was full of unpleasant dreams, which go unremembered now, but the recollection of waking up soaked in sweat is vivid.
Thoughts swarm- watch a dvd or read on the porch? Read scripture and listen to an online sermon? Read a book or write a blog post?
All of these things sound appealing and impossible at the same time.
Taking a shower is going to take away even more energy, of which there is barely any of. But a shower is important because it creates the illusion that you are well. You are cleansed and ready for the day...
Even though pajamas will be your attire and the furthest you will go will be the porch, if that.
People text you. Photos of the child you left behind. Moanings of the heart. You respond, all the while wondering why you sit here caged while they all mill about, not knowing this pain, this fatigue, this loss.
Wake up.
Stumble into the bathroom, brush teeth, put in contacts, use the toilet, check text messages.
Go back into the bedroom,sit on unmade made, get out morning pills (even though it is now afternoon and even after at least 12 hours of sleep there is no rest), and sit for literally one hour trying to summon enough energy to swallow said pills.
Feel absolutely terrible and the idea of making the bed, plugging in the cell phone to charge, and taking a shower seem to be impossible tasks.
Want to cry, or scream, or show something to display the anger and helplessness of not being able to move when you want to move.
The night before was full of unpleasant dreams, which go unremembered now, but the recollection of waking up soaked in sweat is vivid.
Thoughts swarm- watch a dvd or read on the porch? Read scripture and listen to an online sermon? Read a book or write a blog post?
All of these things sound appealing and impossible at the same time.
Taking a shower is going to take away even more energy, of which there is barely any of. But a shower is important because it creates the illusion that you are well. You are cleansed and ready for the day...
Even though pajamas will be your attire and the furthest you will go will be the porch, if that.
People text you. Photos of the child you left behind. Moanings of the heart. You respond, all the while wondering why you sit here caged while they all mill about, not knowing this pain, this fatigue, this loss.
Sunday, September 11, 2011
09/11/11
I was dying over there.
I stare at snapshots and those moments feel like they happened two seconds ago.
I see images that were my life and a lot has transpired between one month ago and now. I am fading and falling and finding and slipping all over the place. My heart in pieces- somewhere feathering out over the California sky.
Those months were the most brutal I have ever personally faced. I felt like it was always night in my insides... like my soul was all matted with gray and I couldn't even fathom how I was getting up everyday. I remember sensations of wanting to give more and not being able to. Not being able to even find the way back to myself.
09-12-11
My throat aches with remembering and fondness and sadness all mingled in one soft ball of clay. I miss her. The delicate way she tip toed as she walked, all fairy like and small. Her small fingers pressed into my back or my skin as she lay sleeping or needing comfort. I remember without the memory... the sounds of her voice first discovered, her tiny breaths as she slept bedside me. I remember picking flowers and playing tea party and making up songs, and it all feels so impossibly close and far away all together. I can't access it anymore, floating high above me are all of those moments strung together only by mere memory. I cannot capture it. I see her already grown in less then a month. Less then, and still it's the longest I've ever been apart from her. I'm pinned beneath the explosion of joy that sears throughout my being knowing she is okay, seeing her smile, hearing that sweet sound that is her voice. The world rightens and it is Christmas and my birthday and every single other day that hung on mundane and normal. I cherish these moments of absolute clarity... her tiny presence as natural to me as breathing, and even now through the miles she is still a part of me.
I was dying over there.
I stare at snapshots and those moments feel like they happened two seconds ago.
I see images that were my life and a lot has transpired between one month ago and now. I am fading and falling and finding and slipping all over the place. My heart in pieces- somewhere feathering out over the California sky.
Those months were the most brutal I have ever personally faced. I felt like it was always night in my insides... like my soul was all matted with gray and I couldn't even fathom how I was getting up everyday. I remember sensations of wanting to give more and not being able to. Not being able to even find the way back to myself.
09-12-11
My throat aches with remembering and fondness and sadness all mingled in one soft ball of clay. I miss her. The delicate way she tip toed as she walked, all fairy like and small. Her small fingers pressed into my back or my skin as she lay sleeping or needing comfort. I remember without the memory... the sounds of her voice first discovered, her tiny breaths as she slept bedside me. I remember picking flowers and playing tea party and making up songs, and it all feels so impossibly close and far away all together. I can't access it anymore, floating high above me are all of those moments strung together only by mere memory. I cannot capture it. I see her already grown in less then a month. Less then, and still it's the longest I've ever been apart from her. I'm pinned beneath the explosion of joy that sears throughout my being knowing she is okay, seeing her smile, hearing that sweet sound that is her voice. The world rightens and it is Christmas and my birthday and every single other day that hung on mundane and normal. I cherish these moments of absolute clarity... her tiny presence as natural to me as breathing, and even now through the miles she is still a part of me.
Friday, September 9, 2011
FLARE.
I had my fibro clinic phone appointment yesterday and it was jam packed. Being on the phone for an hour is severely taxing, especially when fibro fog is horrible, as it has been lately. I've been talking on the phone often lately to my best friend. It reminds me of when we were kids and we talked on the phone everyday. It's been highly enjoyable, but I am remembering that just because I moved does not mean I have suddenly become without fibromyalgia.
The very first thing my doctor told me after I told him how well I did driving cross country, is that my body was going off of adrenaline.... all of it... the whole stressful time before the move, the drive, and even when I got here and acted like Supergal unpacking my room and all. Now that I am settling in here, my body is crashing.
Super.
So he said that I need to rest AS MUCH AS POSSIBLE, to stop whatever I am doing every 45 minutes and just sit, not to push through (which is the exact opposite of who I have always been... I am the queen of push through) and that conserving what little energy I have will allow my body to recoop.
Those instructions sound so damn easy. It's not. Imagine when you are sick with the flu or even a cold (since some people on facebook complain about a tiny cold I stuck this in here. It makes me sick. Can you PLEASE value that you are in good health? Can you suck it up for the 2 days your nose is running? Sorry to all genuine readers. I'm PMSing and in the worst flare I've had in ages and I cannot stomach listening to people bitch about their stuff, expecting me to listen for hours and when I ask for prayer or support they can't take 2 seconds to be there. I'm seriously done with it all. Tangent. Sorry.)and every movement hurts and you ache everywhere and you want a drink from the kitchen but your body won't let you go to the kitchen... or everyone else is laughing and chatting and can sit outside with neighbors or make new friends easily, but you can't. You are trapped in a sick body and it takes you at least 20 minutes to gain enough energy to go to the bathroom.
I was overly emotional yesterday. In a bad mood. Crying. I know it's primarily this flare. I have not had it so bad since before treatments and I know I will feel better once my body recoops. I am not naive enough to think I will be without symptoms.... but at least they will not be so consuming.
Back to what the doctor said: I have to be diligent about my diet. I told him I fudged up on the road and he understood that. He told me to get back on track. He gave me advice about my constantly clogged ear (the one that was infected). He said put a drop of rubbing alcohol in my ear after swimming and it will pop the tension and prevent more infections. I have to up my nitro to 4 full pills a day vs. the tiny amounts I've been taking. It will help with pain. My labs were not very good. My thyroid is now into hyperthyroidism so I have to lower the amount I am taking, and in my fibro fogged brain I mixed up the amount of Vitamin D I am taking. It took me awhile to build up to 15,000 a day of Vit. D. When I ran out of the 1,000 amount I did the math in my head with the 400IU pills and started taking 4 of those a day really thinking 1600 was more then 15,000. I completely did not even realize how much less I was taking.
My brain has been so slow and tired and confused lately. I cannot wait until that clears up. Even while driving (which is so freeing and fun to do again) I get tired or the lights overwhelm me. I now know that is something that I can only do when I am feeling non-flare like or else I can be a detriment to someone else on the road. It's so exhausting! Another lesson n humility. I used to get so irritated by people who were not confident drivers. It was so annoying, and now I have become the easily frazzled, overly stimulated driver.
Medications are being sent to me and when I get them I will be starting a Vit.C sodium powder vs. the pills for awhile. I am to fill up a stainless steel water bottle each morning with the meds and take a huge gulp every hour until bedtime. This is because I failed the VCS test in my eyes for possible mold and fungus issues. I could not afford the extra labs needed for this before I left CA but since I failed the original test my doctor is treating me for it anyway. I am to stay away from all must and mold. "Absolutely stay away" is what he said. I had to tell him that the last motel I stayed at reeked of mold.
He gave me some tips to deal with the pain and stress. "Heat is your best friend," he said. He reminded me to take warm baths with epsom salt to relax muscles, put a heating pad on my neck, and to do yoga type stretches everyday.
Last night I just broke down. I feel sick again. Like sick, sick. How I used to feel back at the beginning. Thank God I know what's going on, because not knowing was infinitely worse. I'm eager to start feeling better so I can enjoy this new chapter.
I'm tired of being taken for granted or being taken advantage of. These last 2 years have definitely taught me who I can and cannot trust, and has shown me what true fellowship is all about. It has taught me that family truly are our best friends, that rare is the one who is a genuine friend, and I know being in "isolation" these 2 years made the way for this place, this time, this sense of belonging nowhere and everywhere all at once.
I am not unhappy. I am blessed in EVERY circumstance. I am not regretful that I obeyed God and moved here. I am not sad. What I am is angry at disease, at the ignorance of people who use me and don't bother to learn what the hell fibromylagia is. What I am mad at is the tips to sleep better or wear a magical bracelet or all the tips that may apply to YOU but have no relevance to fibromyalgia at all. I am told people mean well and I disagree. Meaning well means you actually educate yourself about what I am going through. Meaning well means you give me the time that I give to you when you have gone through hard times. The times I text, pray or call or have sat with you (YOU is not anyone in particular) and now in my most broken season of life, you can't even respond. I am so sick of fake Christians and it breaks my heart too. I am sick of the pretense and so disgusted that I ever wanted to be like the leaders I thought were so Godly.
There is this intense rage I have in my chest today. There is such a battle to become a type B after being a type A my entire life. Even now.... after all of these months.... I still wrestle. I still mourn the loss of what I want to do in my life and the probability that all of the active things probably will not come to pass or may take a long time to get there. How to explain to someone who knows nothing of fibromyalgia except that it "causes pain and fatigue." NO, no, no. That is a flat out lie. What fibromyalgia does is sneak in, set up camp, and slowly sucks out every bit of who you are. It leaves you unable to hold down a job at 31 years of age, causes you to stammer and stutter where once before you were social butterfly, leaves you crying over something as silly as not being able to lift a laundry basket, and all these other things that people are so flip about.
I do not feel sorry for myself. I am strong. I am going to get this thing managed. I am diligent and I am waking up each day believing for the best, but I am also real. I don't believe in lying or sugar coating and all of the other hocus pocus. Don't pity me. DON'T. But DO be sensitive. Do educate yourself about chronic conditions because the chances are you have someone you love that is going through something that has turned their lives upside down.
If you want to be like Jesus... if you want to be biblical... get down in the freaking dirt with the people in your life who are suffering. Stop giving Christianese and stop giving words to people that are not genuine. BE AUTHENTIC. Step away from your cultivated, cult of a western church experience and actually act like a disciple of Jesus. Too hard to hear? Well maybe that means you need to hear it. Don't walk away from your conviction. It means something. Listen to the King. Stop acting like carbon copies in your fancy, air conditioned church buildings and start being the church in YOUR daily life. Stop ignoring the hungry homeless man you see. Buy him breakfast and a coffee one morning instead of gorging your greedy face again. Cancel your gym membership that you never use and only have for status. Stop acting. For the love of God, just stop acting. BE THE CHURCH away from the social club you deem as church.
I love going to church. I have gleaned so much from teachers and people have exemplified Jesus to me. I would not be where I am today- loving Jesus and wanting to live for Him, had it not been for those who took me under their wing and shared His mercy and love with me. I am forever grateful for those precious individuals, but I have also seen that the way believers operate in churches here in America is infinitely different then church in other countries. I am desperate for you, for me, for all of us to feel His fire, His love, His compassion EVERYWHERE and EVERYDAY, not just on Sundays and not just to be superior in the warm cocoon of our own churches.
All of this comes from a place inside of me that feels very broken. I feel broken after seeing all of the injustices I have seen in just this last year. I am done being that girl I was... and I am letting go of ALL that hinders. ALL.
That's a boastful statement isn't it? ALL. It's not going to be easy and I will fail repeatedly in my attempts, but I will get back up and by the grace of God I will keep growing and I will submit again and again the persona that is Janet and become more like Jesus. That is my prayer. That is my cry.
I am done being the one to keep in touch with people. I am done being the perpetual friend to everyone, and then get ignored when I have troubles. I am done.
And that starts right now. Today. Here and now.
People don't like messy. They ask you how you are and don't really want the answer. I dare you to ask me because I will tell you the truth. I will tell you how hard it is to take a billion medications everyday, all day long, spaced just so since med A can't mix with med B can't mix with med C. I will tell you how I wear pajamas most days. I will tell you how frustrating it is to be in this body, in this skin, and yet I value my body more then I ever have because this disease is humbling me and shaking me all apart and giving me a deep appreciation for EVERYTHING physical and mental that I ever took for granted. I will tell you how I hate to read the phoney facebook statuses. Ask me and I will tell you.
I'm off now. If you can't handle this post and me being real, don't bother to comment and don't bother to read anymore. This is reality. I will not pretend so YOU can feel better about yourself.
I had my fibro clinic phone appointment yesterday and it was jam packed. Being on the phone for an hour is severely taxing, especially when fibro fog is horrible, as it has been lately. I've been talking on the phone often lately to my best friend. It reminds me of when we were kids and we talked on the phone everyday. It's been highly enjoyable, but I am remembering that just because I moved does not mean I have suddenly become without fibromyalgia.
The very first thing my doctor told me after I told him how well I did driving cross country, is that my body was going off of adrenaline.... all of it... the whole stressful time before the move, the drive, and even when I got here and acted like Supergal unpacking my room and all. Now that I am settling in here, my body is crashing.
Super.
So he said that I need to rest AS MUCH AS POSSIBLE, to stop whatever I am doing every 45 minutes and just sit, not to push through (which is the exact opposite of who I have always been... I am the queen of push through) and that conserving what little energy I have will allow my body to recoop.
Those instructions sound so damn easy. It's not. Imagine when you are sick with the flu or even a cold (since some people on facebook complain about a tiny cold I stuck this in here. It makes me sick. Can you PLEASE value that you are in good health? Can you suck it up for the 2 days your nose is running? Sorry to all genuine readers. I'm PMSing and in the worst flare I've had in ages and I cannot stomach listening to people bitch about their stuff, expecting me to listen for hours and when I ask for prayer or support they can't take 2 seconds to be there. I'm seriously done with it all. Tangent. Sorry.)and every movement hurts and you ache everywhere and you want a drink from the kitchen but your body won't let you go to the kitchen... or everyone else is laughing and chatting and can sit outside with neighbors or make new friends easily, but you can't. You are trapped in a sick body and it takes you at least 20 minutes to gain enough energy to go to the bathroom.
I was overly emotional yesterday. In a bad mood. Crying. I know it's primarily this flare. I have not had it so bad since before treatments and I know I will feel better once my body recoops. I am not naive enough to think I will be without symptoms.... but at least they will not be so consuming.
Back to what the doctor said: I have to be diligent about my diet. I told him I fudged up on the road and he understood that. He told me to get back on track. He gave me advice about my constantly clogged ear (the one that was infected). He said put a drop of rubbing alcohol in my ear after swimming and it will pop the tension and prevent more infections. I have to up my nitro to 4 full pills a day vs. the tiny amounts I've been taking. It will help with pain. My labs were not very good. My thyroid is now into hyperthyroidism so I have to lower the amount I am taking, and in my fibro fogged brain I mixed up the amount of Vitamin D I am taking. It took me awhile to build up to 15,000 a day of Vit. D. When I ran out of the 1,000 amount I did the math in my head with the 400IU pills and started taking 4 of those a day really thinking 1600 was more then 15,000. I completely did not even realize how much less I was taking.
My brain has been so slow and tired and confused lately. I cannot wait until that clears up. Even while driving (which is so freeing and fun to do again) I get tired or the lights overwhelm me. I now know that is something that I can only do when I am feeling non-flare like or else I can be a detriment to someone else on the road. It's so exhausting! Another lesson n humility. I used to get so irritated by people who were not confident drivers. It was so annoying, and now I have become the easily frazzled, overly stimulated driver.
Medications are being sent to me and when I get them I will be starting a Vit.C sodium powder vs. the pills for awhile. I am to fill up a stainless steel water bottle each morning with the meds and take a huge gulp every hour until bedtime. This is because I failed the VCS test in my eyes for possible mold and fungus issues. I could not afford the extra labs needed for this before I left CA but since I failed the original test my doctor is treating me for it anyway. I am to stay away from all must and mold. "Absolutely stay away" is what he said. I had to tell him that the last motel I stayed at reeked of mold.
He gave me some tips to deal with the pain and stress. "Heat is your best friend," he said. He reminded me to take warm baths with epsom salt to relax muscles, put a heating pad on my neck, and to do yoga type stretches everyday.
Last night I just broke down. I feel sick again. Like sick, sick. How I used to feel back at the beginning. Thank God I know what's going on, because not knowing was infinitely worse. I'm eager to start feeling better so I can enjoy this new chapter.
I'm tired of being taken for granted or being taken advantage of. These last 2 years have definitely taught me who I can and cannot trust, and has shown me what true fellowship is all about. It has taught me that family truly are our best friends, that rare is the one who is a genuine friend, and I know being in "isolation" these 2 years made the way for this place, this time, this sense of belonging nowhere and everywhere all at once.
I am not unhappy. I am blessed in EVERY circumstance. I am not regretful that I obeyed God and moved here. I am not sad. What I am is angry at disease, at the ignorance of people who use me and don't bother to learn what the hell fibromylagia is. What I am mad at is the tips to sleep better or wear a magical bracelet or all the tips that may apply to YOU but have no relevance to fibromyalgia at all. I am told people mean well and I disagree. Meaning well means you actually educate yourself about what I am going through. Meaning well means you give me the time that I give to you when you have gone through hard times. The times I text, pray or call or have sat with you (YOU is not anyone in particular) and now in my most broken season of life, you can't even respond. I am so sick of fake Christians and it breaks my heart too. I am sick of the pretense and so disgusted that I ever wanted to be like the leaders I thought were so Godly.
There is this intense rage I have in my chest today. There is such a battle to become a type B after being a type A my entire life. Even now.... after all of these months.... I still wrestle. I still mourn the loss of what I want to do in my life and the probability that all of the active things probably will not come to pass or may take a long time to get there. How to explain to someone who knows nothing of fibromyalgia except that it "causes pain and fatigue." NO, no, no. That is a flat out lie. What fibromyalgia does is sneak in, set up camp, and slowly sucks out every bit of who you are. It leaves you unable to hold down a job at 31 years of age, causes you to stammer and stutter where once before you were social butterfly, leaves you crying over something as silly as not being able to lift a laundry basket, and all these other things that people are so flip about.
I do not feel sorry for myself. I am strong. I am going to get this thing managed. I am diligent and I am waking up each day believing for the best, but I am also real. I don't believe in lying or sugar coating and all of the other hocus pocus. Don't pity me. DON'T. But DO be sensitive. Do educate yourself about chronic conditions because the chances are you have someone you love that is going through something that has turned their lives upside down.
If you want to be like Jesus... if you want to be biblical... get down in the freaking dirt with the people in your life who are suffering. Stop giving Christianese and stop giving words to people that are not genuine. BE AUTHENTIC. Step away from your cultivated, cult of a western church experience and actually act like a disciple of Jesus. Too hard to hear? Well maybe that means you need to hear it. Don't walk away from your conviction. It means something. Listen to the King. Stop acting like carbon copies in your fancy, air conditioned church buildings and start being the church in YOUR daily life. Stop ignoring the hungry homeless man you see. Buy him breakfast and a coffee one morning instead of gorging your greedy face again. Cancel your gym membership that you never use and only have for status. Stop acting. For the love of God, just stop acting. BE THE CHURCH away from the social club you deem as church.
I love going to church. I have gleaned so much from teachers and people have exemplified Jesus to me. I would not be where I am today- loving Jesus and wanting to live for Him, had it not been for those who took me under their wing and shared His mercy and love with me. I am forever grateful for those precious individuals, but I have also seen that the way believers operate in churches here in America is infinitely different then church in other countries. I am desperate for you, for me, for all of us to feel His fire, His love, His compassion EVERYWHERE and EVERYDAY, not just on Sundays and not just to be superior in the warm cocoon of our own churches.
All of this comes from a place inside of me that feels very broken. I feel broken after seeing all of the injustices I have seen in just this last year. I am done being that girl I was... and I am letting go of ALL that hinders. ALL.
That's a boastful statement isn't it? ALL. It's not going to be easy and I will fail repeatedly in my attempts, but I will get back up and by the grace of God I will keep growing and I will submit again and again the persona that is Janet and become more like Jesus. That is my prayer. That is my cry.
I am done being the one to keep in touch with people. I am done being the perpetual friend to everyone, and then get ignored when I have troubles. I am done.
And that starts right now. Today. Here and now.
People don't like messy. They ask you how you are and don't really want the answer. I dare you to ask me because I will tell you the truth. I will tell you how hard it is to take a billion medications everyday, all day long, spaced just so since med A can't mix with med B can't mix with med C. I will tell you how I wear pajamas most days. I will tell you how frustrating it is to be in this body, in this skin, and yet I value my body more then I ever have because this disease is humbling me and shaking me all apart and giving me a deep appreciation for EVERYTHING physical and mental that I ever took for granted. I will tell you how I hate to read the phoney facebook statuses. Ask me and I will tell you.
I'm off now. If you can't handle this post and me being real, don't bother to comment and don't bother to read anymore. This is reality. I will not pretend so YOU can feel better about yourself.
Tuesday, September 6, 2011
There is this song I have stumbled upon that caresses my heart, evoking deep emotions about the life I am forfeiting.
It is a root tug of letting go, and falling away, and being found in the same exact spot again.... content.
I remember days of strength and drive and life. Precious life bursting forth in colors and sounds with no pause whatsoever. Beauty unnoticed as life blended each moment into the next seamlessly.
And now I notice.
The taste of salt and caramel.
The rain cloaked to skin.
The heart expanding, ever opening to this stream of beautiful life.
Where we are lost, we are found.
Where we end, we begin again.
I grasp these lens... precious have I been given... and breath it all in.
So beautiful I could cry.
Throat swelled with emotion...
pain...
joy...
and something else....
beating beneath the everyday...
thrumming even with no physical state...
and I exist.
I would rather be sick and feel this, then to have stayed healthy and missed this whisper...
life is found in the silence and the isolation and the loneliness.
Dry bones glazed with the promise that comes with sunshine.
It is a root tug of letting go, and falling away, and being found in the same exact spot again.... content.
I remember days of strength and drive and life. Precious life bursting forth in colors and sounds with no pause whatsoever. Beauty unnoticed as life blended each moment into the next seamlessly.
And now I notice.
The taste of salt and caramel.
The rain cloaked to skin.
The heart expanding, ever opening to this stream of beautiful life.
Where we are lost, we are found.
Where we end, we begin again.
I grasp these lens... precious have I been given... and breath it all in.
So beautiful I could cry.
Throat swelled with emotion...
pain...
joy...
and something else....
beating beneath the everyday...
thrumming even with no physical state...
and I exist.
I would rather be sick and feel this, then to have stayed healthy and missed this whisper...
life is found in the silence and the isolation and the loneliness.
Dry bones glazed with the promise that comes with sunshine.
Tuesday
Today is...
a flare
driving and then getting so tired I had to ask my mom to drive home
a salted caramel hot chocolate from Starbucks
glorious rain
2 magazines and Wuthering Heights at the bookstore
holds picked up at the library
reading
my fibro sisters
poems by Rilke
looking forward to talking to my little human later
a flare
driving and then getting so tired I had to ask my mom to drive home
a salted caramel hot chocolate from Starbucks
glorious rain
2 magazines and Wuthering Heights at the bookstore
holds picked up at the library
reading
my fibro sisters
poems by Rilke
looking forward to talking to my little human later
Saturday, September 3, 2011
I love poetry.
Childhood
It would be good to give much thought, before
you try to find words for something so lost,
for those long childhood afternoons you knew
that vanished so completely -and why?
We're still reminded-: sometimes by a rain,
but we can no longer say what it means;
life was never again so filled with meeting,
with reunion and with passing on
as back then, when nothing happened to us
except what happens to things and creatures:
we lived their world as something human,
and became filled to the brim with figures.
And became as lonely as a sheperd
and as overburdened by vast distances,
and summoned and stirred as from far away,
and slowly, like a long new thread,
introduced into that picture-sequence
where now having to go on bewilders us.
-Rilke
It would be good to give much thought, before
you try to find words for something so lost,
for those long childhood afternoons you knew
that vanished so completely -and why?
We're still reminded-: sometimes by a rain,
but we can no longer say what it means;
life was never again so filled with meeting,
with reunion and with passing on
as back then, when nothing happened to us
except what happens to things and creatures:
we lived their world as something human,
and became filled to the brim with figures.
And became as lonely as a sheperd
and as overburdened by vast distances,
and summoned and stirred as from far away,
and slowly, like a long new thread,
introduced into that picture-sequence
where now having to go on bewilders us.
-Rilke
Subscribe to:
Posts (Atom)