Candida die off is hard core.
Every time I go through this I remember how horrible it is.
The scale is 8lbs. down in the week since I have stopped consuming sugar and snacking much. That is a great relief. My insides no longer feel disgustingly full and I can see & feel the changes in my figure and gut. My clothes are fitting better and I am encouraged to keep going, but man, this is severe.
On top of the usual CFS/Fibro I am experiencing the die off symptoms in spades. My exhaustion is paramount and I can hardly stand ANY flicker of the television or movement. More so than usual. I am feeling much more sluggish and drained, dehydrated, achy, and got a random canker sore the other day, which I had no idea was a symptom of die off. Plus my irritability has been full force.
This is a clanging reminder of how serious systematic candida is and how I must be diligent about not consuming sugar. I used to do so well, until I moved and now it will go well for weeks and I will innocently have a piece of chocolate or something and suddenly my body is craving sweets and starches like there is no tomorrow. When the candida is fed it gets greedy.
I am in a new kind of misery. I mentioned a few symptoms but there are a lot more. It's grueling. Blah. I pray this time I would remember how it feels so I don't have to repeat the process.
One of the ways to minimize symptoms is to make sure to rest. Huh. Go figure. THE thing I am supposed to do anyway, per God and per Fibro.
As yucky as this feels I am also quite tickled at the fact that when we ask God to help us obey what He has asked He sure does work all things in and around us to make sure we get there.
Rest. Rest. Rest. Rest. Rest.
Sunday, January 13, 2013
Sunday
After weeks of EXTREME exhaustion & pain unrelenting in the slightest, I woke up today with a very precious, tiny canister of energy. I've already made the bed and I can feel the strength sapping fast. This is the blessing and curse moment the person with Fibromyalgia waits for. The little bit of normalcy (and not even!) and the quick draw as the body sucks out with alarming fever.
Already the birds outside that just a moment ago sang so gaily are now piercing my ear drums. The water running in the kitchen loud as a roar. The person in the bathroom, separated by one thin wall, constantly clearing their throat, flushing the toilet, my immediate enemy.
It's such a delicate life to lead.
Already my body is settling back into a state of exhaustion, wherein keeping the eyes open is a chore. I have been awake for less than an hour and already I am drained for the entire day.
Still, I am grateful that for a few brief minutes it was a pleasure to hear the birds sing.
God has been speaking to me about this call to rest. His command for me this year, His desire to have me all to Himself. As I wrote in my journal last night I was brought to the startling discovery that of course (of course!) as God ushers me to choose Him over all things, suddenly things will start competing for my time and energy more than ever! And they won't be half appealing or simply satisfactory. No way. They will be tailored to my desires, because the devil knows what I like. And they will even be good things, like a conference or a trip or new books or new worship CDs or magazines. All of it waiting to steal me away from the rest God is telling me I NEED.
So I have to choose. I have to stop. I have to realign my priorities, my heart. Get back to my first love and settle in for as long as this season shall be. Oh, it is hard!
The truest friends of Fibromyalgia are silence and sleep. All else is a madhouse of sorts.
We pray that you'll have the strength to stick it out over the long haul - not the grim strength of gritting your teeth but the glory-strength God gives. It is strength that endures the unendurable and spills over into joy,
Colossians 1:11
"Hang in there. It is astonishing how short a time it can take for very wonderful things to happen."- Frances Hodgson Burnett
“My face set to a grim and determined expression. I speak in all modesty as I say this, but I discovered at that moment that I have a fierce will to live. It's not something evident, in my experience. Some of us give up on life with only a resigned sigh. Others fight a little, then lose hope. Still others - and I am one of those - never give up. We fight and fight and fight. We fight no matter the cost of battle, the losses we take, the improbability of success. We fight to the every end. It's not a question of courage. It's something constitutional, an inability to let go. It may be nothing more than life-hungry stupidity.”
-Yann Martel
"The worst pair of opposites is boredom and terror. Sometimes your life is a pendulum swing from one to the other. The sea is without a wrinkle. There is not a whisper of wind. The hours last forever. You are so bored you sink into a state of apathy close to a coma. Then the sea becomes rough and your emotions are whipped into a frenzy. Yet even these two opposites do not remain distinct. In your boredom there are elements of terror: you break down into tears; you are filled with dread; you scream; you deliberately hurt yourself. And in the grip of terror – the worst storm – you yet feel boredom, a deep weariness with it all.
Only death consistently excites your emotions, whether contemplating it when life is safe and stale, or fleeing it when life is threatened and precious.
Life on a boat isn’t much of a life. It is like an end game in chess, a game with few pieces. The elements couldn’t be more simple, nor the stakes higher. Physically it is extraordinarily arduous, and morally it is killing. You must make adjustments if you want to survive. Much becomes expendable. You get your happiness when you can. You reach a point where you’re at the bottom of hell, yet you have your arms crossed and a smile on your face, and you feel you’re the luckiest person on earth. Why? Because at your feet you have a tiny dead fish."
-Yann Martel
Already the birds outside that just a moment ago sang so gaily are now piercing my ear drums. The water running in the kitchen loud as a roar. The person in the bathroom, separated by one thin wall, constantly clearing their throat, flushing the toilet, my immediate enemy.
It's such a delicate life to lead.
Already my body is settling back into a state of exhaustion, wherein keeping the eyes open is a chore. I have been awake for less than an hour and already I am drained for the entire day.
Still, I am grateful that for a few brief minutes it was a pleasure to hear the birds sing.
God has been speaking to me about this call to rest. His command for me this year, His desire to have me all to Himself. As I wrote in my journal last night I was brought to the startling discovery that of course (of course!) as God ushers me to choose Him over all things, suddenly things will start competing for my time and energy more than ever! And they won't be half appealing or simply satisfactory. No way. They will be tailored to my desires, because the devil knows what I like. And they will even be good things, like a conference or a trip or new books or new worship CDs or magazines. All of it waiting to steal me away from the rest God is telling me I NEED.
So I have to choose. I have to stop. I have to realign my priorities, my heart. Get back to my first love and settle in for as long as this season shall be. Oh, it is hard!
The truest friends of Fibromyalgia are silence and sleep. All else is a madhouse of sorts.
We pray that you'll have the strength to stick it out over the long haul - not the grim strength of gritting your teeth but the glory-strength God gives. It is strength that endures the unendurable and spills over into joy,
Colossians 1:11
"Hang in there. It is astonishing how short a time it can take for very wonderful things to happen."- Frances Hodgson Burnett
“My face set to a grim and determined expression. I speak in all modesty as I say this, but I discovered at that moment that I have a fierce will to live. It's not something evident, in my experience. Some of us give up on life with only a resigned sigh. Others fight a little, then lose hope. Still others - and I am one of those - never give up. We fight and fight and fight. We fight no matter the cost of battle, the losses we take, the improbability of success. We fight to the every end. It's not a question of courage. It's something constitutional, an inability to let go. It may be nothing more than life-hungry stupidity.”
-Yann Martel
"The worst pair of opposites is boredom and terror. Sometimes your life is a pendulum swing from one to the other. The sea is without a wrinkle. There is not a whisper of wind. The hours last forever. You are so bored you sink into a state of apathy close to a coma. Then the sea becomes rough and your emotions are whipped into a frenzy. Yet even these two opposites do not remain distinct. In your boredom there are elements of terror: you break down into tears; you are filled with dread; you scream; you deliberately hurt yourself. And in the grip of terror – the worst storm – you yet feel boredom, a deep weariness with it all.
Only death consistently excites your emotions, whether contemplating it when life is safe and stale, or fleeing it when life is threatened and precious.
Life on a boat isn’t much of a life. It is like an end game in chess, a game with few pieces. The elements couldn’t be more simple, nor the stakes higher. Physically it is extraordinarily arduous, and morally it is killing. You must make adjustments if you want to survive. Much becomes expendable. You get your happiness when you can. You reach a point where you’re at the bottom of hell, yet you have your arms crossed and a smile on your face, and you feel you’re the luckiest person on earth. Why? Because at your feet you have a tiny dead fish."
-Yann Martel
Thursday, January 10, 2013
Choosing Rest
*Rest: 1: sleep 2: freedom from work or activity 3: state of inactivity 4: something used as a support~ 1: get rest 2: cease action or motion 3: give rest to 4: sit or lie fixed or supported 5: depend
Tonight I got all dressed to go to church (I even wore some cute heart earrings)despite the fatigue pressing in. It was a sort of defiant decision to go and as I got ready to leave, I lay back on the bed and closed my eyes. I was exhausted and my limbs were like dead weights. It felt good to actually lie down for once, and in that moment I realized how utterly selfish it would be for me to get in a car and drive anywhere in this state of supreme debilitation. I could fall asleep at the wheel or freak out from the lights so bright, or hit someone because I was too tired to take note of my surroundings.
I thought of how God is calling me to a season of rest. REAL rest. I thought about how we all have different seasons and struggles and how my particular struggle has consistently been to stop. To just be still. It was like that when I was a nanny, when I served in ministries, when I didn't have Fibromyalgia, and surprisingly, it's even worse WITH Fibromyalgia. I tend to push back when my body begs me to rest.
Every year Abba gives me a theme. It started in 2005 and it will come as a whisper. Sometimes I have absolutely no idea what it means until way later, such as one year themed: "open your eyes" or another: "letting go." This year it's: "learning how to rest." Pretty clear, right? You would think so, but my heart is stubborn. Anyway, in that moment, laying on the bed, I knew I had to choose. Myself or God. That may sound funny, but going to church tonight would have been choosing myself. To religious eyes, to the standard of Christian culture today, not going to church every week is taboo. It signifies that one is not "as" spiritual or that they are "lost" or somehow not as in love with Jesus as Delia-Do-Everything is. In layman's terms- it's judgmental. I've been that person. Intentionally or not, I think most Christians have. If last year was accepting this sickness, now is the time that I learn what it means to be still. Fighting against my body tonight would have been feeding my ego. The part of me that is bound and determined to be Janet without Fibromyalgia. That is always my first inclination, and thus, choosing to stay home (for me) is the harder choice. The most spiritual thing I could do is stay home. Imagine that!
I miss corporately worshiping. I miss constant, face to face fellowship (but oh, how I am grateful for technology that enables fellowship from afar). I miss being active and serving. But all of that, it's about me, not God. Because God is speaking to me and I'm not listening. I'm like a child plugging my ears with my fingers. Choosing myself, choosing my way over His.
I don't cease. On my very bad days I still force myself to do laundry or create small projects. Though I have come a long way from before, I still struggle with accepting my limitations. I've never been idle. To me that is a waste of time. Hence, my challenge. I'm not boasting in this, I'm saying this is NOT what God calls me to.
“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls."
Matthew 11:28-29
Psalm 61:1
“Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe. I long to dwell in your tent forever and take refuge in the shelter of your wings.”
Psalm 62:1-2
“My soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken.”
Isaiah 40:28- 31
“Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”
Psalm 23:2
He lets me rest in green meadows; he leads me beside peaceful streams.
There are moments where all activity must cease and a heart must be still before the Lord. I'm not just talking about prayer. I'm talking about stillness. With NOTHING to distract. No petitions, no words, just the solitude and surrender that comes with bowing before our God. No television, no books, no internet, no music. Just... silence.
Lately my head had been so full of fog. It feels like a bunch a cotton for brains. I try to read and it's difficult. I spend entirely too much time on my iPhone. I don't know what rest looks like for my life yet. I have asked God to lead me down that path and to give me the courage and strength to abide in it. To choose rest feels like gritting my teeth. It feels like defeat. Like I am letting my sickness win. Tonight felt like a big accomplishment.
It's mind boggling to me how we can act so beastly sometimes and yet He still blesses, still loves, and not only loves, but loves HARD. Earlier I had a little tantrum. It happens sometimes with Fibro. It happens to me way less frequently then it used to, but occasionally I will get really hot inside, feel like I can't stand being in this body any longer, and I will snap. It makes me feel embarrassed and guilty and ashamed. I don't like it one little bit, but it happens. Being in pain 24/7, 365 days a year will do that to a person. ;) So I'll feel like a monster, and then God comes quickly to forgive and restore, and His affection is so LOUD that I can only be grateful. So grateful.
Today, after all was said and done, I was checking Instagram and saw that some of my favorite music makers (worship mothers and fathers) will be coming to Wilmington in March. This church is in California, and they are coming to NC?! Let alone my very favorite town in the entire world?! God has healed my heart a few times in Wilmington. Kayaking* for one.
*This was one of the most peaceful experiences of my life. There had been a great deal of strife only the night before and the decision to kayak was random. I just knew I wanted to see Dawson Leery's house and getting there by kayak was the only option. I had never kayaked before and it was hard. I remember the sun beating down furiously. I was not dressed for the occasion, and I was pedaling with all of my might. Halfway there I learned from the guide that it was an intermediate course and I was full of regret for signing up. Surely I would not make it. But suddenly we were there, and it was so worth it. I felt so excited! On the way back it was quiet. The guide and I were silent and I listened to the water lapping against the kayak, saw the blue sky, and heard the birds sing around us. It was beautiful. It was one of the best days of my life.*
Anyway, how random is that?! ONLY God. People may scoff and claim coincidence, but I know... I know His love. I know He is absolutely in the details and the fact that I may have an opportunity to worship with some amazingly free and furious worshipers... in my favorite place... that is not coincidence, that is a loving, beautiful, oh so very attentive God.
And not only that! Oh no, there's more. The perfect devotional today.
How many times have I lamented that I feel like a prisoner? And today I was reminded again of those who have gone before me, and I know that I know that I know that the God of the universe is with me in my "prison." Not fashioned with cells and bars, but a prison made up of sickness and isolation and despair.
He meets me here and reminds me that He's got this. HE HAS GOT THIS. And I cry in release and in joy because this kind of love is insane! It's a fire! It's a river! It's unicorns and babies laughing and flowers everywhere. It's God. In my heart. In my soul. In my spirit. In my very being.
So tonight I chose. Church would have been fun and good and well. I miss it so. But this silence... this rush of God's tangible love-
I feel Him here and He says, "be still & wait,"
and so I will.
Tonight I got all dressed to go to church (I even wore some cute heart earrings)despite the fatigue pressing in. It was a sort of defiant decision to go and as I got ready to leave, I lay back on the bed and closed my eyes. I was exhausted and my limbs were like dead weights. It felt good to actually lie down for once, and in that moment I realized how utterly selfish it would be for me to get in a car and drive anywhere in this state of supreme debilitation. I could fall asleep at the wheel or freak out from the lights so bright, or hit someone because I was too tired to take note of my surroundings.
I thought of how God is calling me to a season of rest. REAL rest. I thought about how we all have different seasons and struggles and how my particular struggle has consistently been to stop. To just be still. It was like that when I was a nanny, when I served in ministries, when I didn't have Fibromyalgia, and surprisingly, it's even worse WITH Fibromyalgia. I tend to push back when my body begs me to rest.
Every year Abba gives me a theme. It started in 2005 and it will come as a whisper. Sometimes I have absolutely no idea what it means until way later, such as one year themed: "open your eyes" or another: "letting go." This year it's: "learning how to rest." Pretty clear, right? You would think so, but my heart is stubborn. Anyway, in that moment, laying on the bed, I knew I had to choose. Myself or God. That may sound funny, but going to church tonight would have been choosing myself. To religious eyes, to the standard of Christian culture today, not going to church every week is taboo. It signifies that one is not "as" spiritual or that they are "lost" or somehow not as in love with Jesus as Delia-Do-Everything is. In layman's terms- it's judgmental. I've been that person. Intentionally or not, I think most Christians have. If last year was accepting this sickness, now is the time that I learn what it means to be still. Fighting against my body tonight would have been feeding my ego. The part of me that is bound and determined to be Janet without Fibromyalgia. That is always my first inclination, and thus, choosing to stay home (for me) is the harder choice. The most spiritual thing I could do is stay home. Imagine that!
I miss corporately worshiping. I miss constant, face to face fellowship (but oh, how I am grateful for technology that enables fellowship from afar). I miss being active and serving. But all of that, it's about me, not God. Because God is speaking to me and I'm not listening. I'm like a child plugging my ears with my fingers. Choosing myself, choosing my way over His.
I don't cease. On my very bad days I still force myself to do laundry or create small projects. Though I have come a long way from before, I still struggle with accepting my limitations. I've never been idle. To me that is a waste of time. Hence, my challenge. I'm not boasting in this, I'm saying this is NOT what God calls me to.
“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls."
Matthew 11:28-29
Psalm 61:1
“Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe. I long to dwell in your tent forever and take refuge in the shelter of your wings.”
Psalm 62:1-2
“My soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken.”
Isaiah 40:28- 31
“Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”
Psalm 23:2
He lets me rest in green meadows; he leads me beside peaceful streams.
There are moments where all activity must cease and a heart must be still before the Lord. I'm not just talking about prayer. I'm talking about stillness. With NOTHING to distract. No petitions, no words, just the solitude and surrender that comes with bowing before our God. No television, no books, no internet, no music. Just... silence.
Lately my head had been so full of fog. It feels like a bunch a cotton for brains. I try to read and it's difficult. I spend entirely too much time on my iPhone. I don't know what rest looks like for my life yet. I have asked God to lead me down that path and to give me the courage and strength to abide in it. To choose rest feels like gritting my teeth. It feels like defeat. Like I am letting my sickness win. Tonight felt like a big accomplishment.
It's mind boggling to me how we can act so beastly sometimes and yet He still blesses, still loves, and not only loves, but loves HARD. Earlier I had a little tantrum. It happens sometimes with Fibro. It happens to me way less frequently then it used to, but occasionally I will get really hot inside, feel like I can't stand being in this body any longer, and I will snap. It makes me feel embarrassed and guilty and ashamed. I don't like it one little bit, but it happens. Being in pain 24/7, 365 days a year will do that to a person. ;) So I'll feel like a monster, and then God comes quickly to forgive and restore, and His affection is so LOUD that I can only be grateful. So grateful.
Today, after all was said and done, I was checking Instagram and saw that some of my favorite music makers (worship mothers and fathers) will be coming to Wilmington in March. This church is in California, and they are coming to NC?! Let alone my very favorite town in the entire world?! God has healed my heart a few times in Wilmington. Kayaking* for one.
*This was one of the most peaceful experiences of my life. There had been a great deal of strife only the night before and the decision to kayak was random. I just knew I wanted to see Dawson Leery's house and getting there by kayak was the only option. I had never kayaked before and it was hard. I remember the sun beating down furiously. I was not dressed for the occasion, and I was pedaling with all of my might. Halfway there I learned from the guide that it was an intermediate course and I was full of regret for signing up. Surely I would not make it. But suddenly we were there, and it was so worth it. I felt so excited! On the way back it was quiet. The guide and I were silent and I listened to the water lapping against the kayak, saw the blue sky, and heard the birds sing around us. It was beautiful. It was one of the best days of my life.*
Anyway, how random is that?! ONLY God. People may scoff and claim coincidence, but I know... I know His love. I know He is absolutely in the details and the fact that I may have an opportunity to worship with some amazingly free and furious worshipers... in my favorite place... that is not coincidence, that is a loving, beautiful, oh so very attentive God.
And not only that! Oh no, there's more. The perfect devotional today.
How many times have I lamented that I feel like a prisoner? And today I was reminded again of those who have gone before me, and I know that I know that I know that the God of the universe is with me in my "prison." Not fashioned with cells and bars, but a prison made up of sickness and isolation and despair.
He meets me here and reminds me that He's got this. HE HAS GOT THIS. And I cry in release and in joy because this kind of love is insane! It's a fire! It's a river! It's unicorns and babies laughing and flowers everywhere. It's God. In my heart. In my soul. In my spirit. In my very being.
So tonight I chose. Church would have been fun and good and well. I miss it so. But this silence... this rush of God's tangible love-
I feel Him here and He says, "be still & wait,"
and so I will.
Peeved
Fakers piss me off. I abhor lies in general, so that is half of my displeasure & I don't know if it can be adequately expressed but I shall try. It is like they claim the hardship of this illness without going through the trauma of it. They rob us of our grief and sorrow and anger by trivializing the whole blasted thing.
Because sickness is not some polite, tidy thing. It cannot be compartmentalized. It IS. We do the best we can but it still invades our laughter, our thoughts, our ability to function. Even the most positive of souls is affected.
This... These long stretches of SEVERE (not to be mistaken for the regular, daily pain and fatigue) exhaustion & crushing pain, are no joke. These days are maddening. It is if our very bones are weary and crying out for relief. Every sound is a slam to the system. So to have people out there who claim it, but still do everything they want ALL of the time, saying it is possible because they "won't let fibro get me down" is so dismissive of the fact that it is an actual illness.
It's partnering with those scoffers who think yoga or diet will heal or give us super powers.
It says that the doctors who mistreat us are justified, and that the "mind over matter" comments have merit. It says that we (the ACTUAL sufferers) are responsible for our illness. Responsible to educate ourselves about it? Yes. Responsible to eat properly for our unique digestive systems? Yes. Responsible for exercise when possible and doing what we can to have a functioning life despite the illness? Oh yes, yes, yes.
But responsible to cure ourselves with tai chi? To push past (For the record, we do this on the daily as we make small talk, sit at the dinner table, celebrate birthdays, take showers, do laundry... Ya know, LIFE.) our constantly overloaded, freaked out nervous system? No.
Responsible for being sick in the first place? Oh, NO! We did not ask for this. We do not want it. In fact, a daily plea is to wake up without it! This life sucking villain who never leaves our side.
Fibromyalgia is not some delicate, polite little disease. It's maddening. It's all encompassing. Sight, sound, touch, taste, and smell. Throw in Chronic Fatigue & we've got ourselves a party. We must pick and choose. A trip to the movies sure is fun but it also collects huge afterward. Going to church? All those lights and motion and socializing and music? It's a Fibro nightmare. Best to watch online services.
Sure, some people with Fibro can work. A limited few. Sure, some do all the things they used to do. That's super for them, but the majority? Well, we are the ones who have tried in vain to "push past" sickness. The ones who have fought (or still fight) anger, depression, denial. We have bargained and pleaded with God. We have faced our ugliest, darkest selves and have batches of acceptance, only to cycle through the darkness again.
We try different medications. We rejoice with one another at the accomplishments... A book published, a trip taken, a successful pregnancy. We cry over each others losses. We protect one another, because we know in this world we are disbelieved, belittled, copied (as if sickness is glorifying!), mocked, written off. We face our inner demons and we cry out to the God who created our bodies and we ask why and we wish not to exist, just as we laugh, find joy in unexpected places, and love in ways we never thought we could. Through our pain comes the treasure of beauty from ashes.
Fibromyalgia is not in our heads. It is not something one can escape. It is not an illness that should be copied because it sounds good on paper.
That's the trouble. Anyone can claim this disease. It's freaking invisible!
But for those of us in the trenches, we can spot another sufferer plain as day, just as a Christ follower can step onto an elevator and know a fellow brother just by sight. This means we generally can spot the phonies... There's only so much that can be faked. The pain & reality of our condition makes itself known quite quickly in mixed company. The blanket list of aches and pains splayed all over the web or those annoying, insensitive, unrealistic Lyrica commercials does not even depict a fraction of the reality of Fibromyalgia. Truth. So, saying you are in pain will only last so long in the presence of a true sufferer. You can claim it, but if it's true, it's not really as invisible as the world thinks. Those who are with us every day know what I'm talking about. And let's not even get started on other sufferers who compete with one another as to who has it worse. It's all bad, friends! Let's join together, not try to win for who is the sickest! Good grief! As you can see, dear reader, I am not feeling so sunshine-y today. This must be said though & I make no apology.
To my friends alongside me in this battle: I applaud you! I pray your strength and dignity and color will abound and that I might have even a shred of your bravery and character. Thank you for being my teachers in this fight we endure. I am sincerely grateful for you.
And to those in my sphere who love me despite my illness, who can see beyond a tantrum or a bad day (or weeks), BLESS you. You have been most merciful and I adore you for loving me.
A million thank yous will never be enough.
Recently a friend shared some new information about Fibromyalgia on Facebook. It gives more weight to the fact that this is autoimmune. Take a peek:
http://www.fmnetnews.com/free-articles/article-samples/why-head-to-toe-pain
Because sickness is not some polite, tidy thing. It cannot be compartmentalized. It IS. We do the best we can but it still invades our laughter, our thoughts, our ability to function. Even the most positive of souls is affected.
This... These long stretches of SEVERE (not to be mistaken for the regular, daily pain and fatigue) exhaustion & crushing pain, are no joke. These days are maddening. It is if our very bones are weary and crying out for relief. Every sound is a slam to the system. So to have people out there who claim it, but still do everything they want ALL of the time, saying it is possible because they "won't let fibro get me down" is so dismissive of the fact that it is an actual illness.
It's partnering with those scoffers who think yoga or diet will heal or give us super powers.
It says that the doctors who mistreat us are justified, and that the "mind over matter" comments have merit. It says that we (the ACTUAL sufferers) are responsible for our illness. Responsible to educate ourselves about it? Yes. Responsible to eat properly for our unique digestive systems? Yes. Responsible for exercise when possible and doing what we can to have a functioning life despite the illness? Oh yes, yes, yes.
But responsible to cure ourselves with tai chi? To push past (For the record, we do this on the daily as we make small talk, sit at the dinner table, celebrate birthdays, take showers, do laundry... Ya know, LIFE.) our constantly overloaded, freaked out nervous system? No.
Responsible for being sick in the first place? Oh, NO! We did not ask for this. We do not want it. In fact, a daily plea is to wake up without it! This life sucking villain who never leaves our side.
Fibromyalgia is not some delicate, polite little disease. It's maddening. It's all encompassing. Sight, sound, touch, taste, and smell. Throw in Chronic Fatigue & we've got ourselves a party. We must pick and choose. A trip to the movies sure is fun but it also collects huge afterward. Going to church? All those lights and motion and socializing and music? It's a Fibro nightmare. Best to watch online services.
Sure, some people with Fibro can work. A limited few. Sure, some do all the things they used to do. That's super for them, but the majority? Well, we are the ones who have tried in vain to "push past" sickness. The ones who have fought (or still fight) anger, depression, denial. We have bargained and pleaded with God. We have faced our ugliest, darkest selves and have batches of acceptance, only to cycle through the darkness again.
We try different medications. We rejoice with one another at the accomplishments... A book published, a trip taken, a successful pregnancy. We cry over each others losses. We protect one another, because we know in this world we are disbelieved, belittled, copied (as if sickness is glorifying!), mocked, written off. We face our inner demons and we cry out to the God who created our bodies and we ask why and we wish not to exist, just as we laugh, find joy in unexpected places, and love in ways we never thought we could. Through our pain comes the treasure of beauty from ashes.
Fibromyalgia is not in our heads. It is not something one can escape. It is not an illness that should be copied because it sounds good on paper.
That's the trouble. Anyone can claim this disease. It's freaking invisible!
But for those of us in the trenches, we can spot another sufferer plain as day, just as a Christ follower can step onto an elevator and know a fellow brother just by sight. This means we generally can spot the phonies... There's only so much that can be faked. The pain & reality of our condition makes itself known quite quickly in mixed company. The blanket list of aches and pains splayed all over the web or those annoying, insensitive, unrealistic Lyrica commercials does not even depict a fraction of the reality of Fibromyalgia. Truth. So, saying you are in pain will only last so long in the presence of a true sufferer. You can claim it, but if it's true, it's not really as invisible as the world thinks. Those who are with us every day know what I'm talking about. And let's not even get started on other sufferers who compete with one another as to who has it worse. It's all bad, friends! Let's join together, not try to win for who is the sickest! Good grief! As you can see, dear reader, I am not feeling so sunshine-y today. This must be said though & I make no apology.
To my friends alongside me in this battle: I applaud you! I pray your strength and dignity and color will abound and that I might have even a shred of your bravery and character. Thank you for being my teachers in this fight we endure. I am sincerely grateful for you.
And to those in my sphere who love me despite my illness, who can see beyond a tantrum or a bad day (or weeks), BLESS you. You have been most merciful and I adore you for loving me.
A million thank yous will never be enough.
Recently a friend shared some new information about Fibromyalgia on Facebook. It gives more weight to the fact that this is autoimmune. Take a peek:
http://www.fmnetnews.com/free-articles/article-samples/why-head-to-toe-pain
Thursday, December 6, 2012
Betty
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.
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.
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.
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