From my journal entry on 11/21/10
What if I write down verses that encouraged me during seasons of my life- good and bad? Instead of dwelling on thoughts (unless it's particularly crucial) I write down ONLY what God is telling me? WOW. Wonderful thought. Much of what we write about is not necessary. A journal is not a place to record mistakes and hurts and every nitty gritty detail- it's a place to mark the pivotal instances/experiences in our lives.
It all of a sudden got freezing. Sitting out here at CP. I love how it feels- the air blowing around me like ice. It covers me in it's purity.
Before I burned all 85 of my journals in 2007, I used to write down so much junk. When I sat and re-read them I hated going back and reading about all of the things the Lord had set me free from. People say it's good and a time capsule of sorts, but it's not. It's like torturing yourself a second time to read fresh all the hurts. It takes a long time to heal emotionally and then when you go and read your own pain- your old woes- it's like ripping open the flesh and having to re-heal in a way. Not a good feeling at all.
Psalm 55
1-3 Open your ears, God, to my prayer; don't pretend you don't hear me knocking.
Come close and whisper your answer.
I really need you.
I shudder at the mean voice,
quail before the evil eye,
As they pile on the guilt,
stockpile angry slander.
4-8 My insides are turned inside out;
specters of death have me down.
I shake with fear,
I shudder from head to foot.
"Who will give me wings," I ask—
"wings like a dove?"
Get me out of here on dove wings;
I want some peace and quiet.
I want a walk in the country,
I want a cabin in the woods.
I'm desperate for a change
from rage and stormy weather.
9-11 Come down hard, Lord—slit their tongues.
I'm appalled how they've split the city
Into rival gangs
prowling the alleys
Day and night spoiling for a fight,
trash piled in the streets,
Even shopkeepers gouging and cheating
in broad daylight.
12-14 This isn't the neighborhood bully
mocking me—I could take that.
This isn't a foreign devil spitting
invective—I could tune that out.
It's you! We grew up together!
You! My best friend!
Those long hours of leisure as we walked
arm in arm, God a third party to our conversation.
15 Haul my betrayers off alive to hell—let them
experience the horror, let them
feel every desolate detail of a damned life.
16-19 I call to God;
God will help me.
At dusk, dawn, and noon I sigh
deep sighs—he hears, he rescues.
My life is well and whole, secure
in the middle of danger
Even while thousands
are lined up against me.
God hears it all, and from his judge's bench
puts them in their place.
But, set in their ways, they won't change;
they pay him no mind.
20-21 And this, my best friend, betrayed his best friends;
his life betrayed his word.
All my life I've been charmed by his speech,
never dreaming he'd turn on me.
His words, which were music to my ears,
turned to daggers in my heart.
22-23 Pile your troubles on God's shoulders—
he'll carry your load, he'll help you out.
He'll never let good people
topple into ruin.
But you, God, will throw the others
into a muddy bog,
Cut the lifespan of assassins
and traitors in half.
And I trust in you.
When we ask God to heal us- he does. IMMEDIATELY.
The moment our lips part and the first breath of our petition leaks from within He is already bringing thread through the muscle of our heart. Stitch by stitch until what we feel is distant. It hurts as He sews, but once we are all stitched up we begin to heal and soon enough it is only the scar that remains to remind us of the brokenness... just a reminder... to remind us of who we have become.
Today 11/23/10-
NOTE:
Being around high strung people makes me feel more anxious. I literally felt like "GET ME OUT OF HERE!" Panic. It's too much. Especially in a car with a radio on. No bueno.
Today I had another series of Sacro-Iliac Joint Injections. It hurt so bad. I was gripping the "bed" as he stabbed me with several needles. I don't think one ever gets used to having their bare booty to the world (okay to a couple of medical personnel). The shot leaked and went all over my butt. It's pretty weird to have someone you don't know wiping your behind! ;)
Afterwards I stood up and almost passed out. I knew it was a bad fibro day as soon as I woke up, so having injections was not that grand. It never is, but on passable fibro days I can handle it. I was told to sit in recovery and eat Goldfish crackers and sip apple juice. I sat for a spell and when I got up my left leg felt like rubber. Still does. I go back in 2 weeks.
Worth mentioning:
The last 5 or 6 times I have had an elevated high blood pressure read. Hypertension runs on both sides of my family (both of my parents have high blood pressure) so I try to stay on the ball with that. I was told today that since I am at level 8-10 pain everyday that my blood pressure can spike up. I made an appointment with my primary to check on that.
Here have been my last 4 results from the pain management place (I don't have the other readings yet):
10/13/10- 138/102
11/03/10- 125/89
11/15/10- 130/84
11/24/10- 145/92
I REALLY MISS DRIVING. I don't have my own car anymore, and while I know it takes a lot of energy to drive, I also know I don't want to become one of those women who never drives anymore... ever. It really limits freedom. If I had a car I would never miss church. I would go back to corporate prayer every week. I know I would have limitations and that I could not go out all the time, let alone drive, but it would be nice to have some freedom every now and again.
I forgot to write about the support group I went to.
It was good to go and meet some other women going through this. However, they were all in their 50's, 60's, and 70's. We are all at different points of fibro. It was nice to talk with them and get some wisdom. While I was there I kept thinking about how I really feel that a SUPPORT group should be a safe place for people to share their hearts and not feel judged or misunderstood.
God has placed a burden on my heart to create my own support group that is based on Him. I feel pretty overwhelmed by the idea of starting one while so "under fibro" but I know He has placed that desire in me for a reason. I am praying about timing and meeting and even what to do during our meetings. I am just going to go for it. ;)
"You, my brothers, were called to be free. But do not use your freedom to indulge the sinful nature; rather, serve one another in love.
Galatians 5:13"
"Are you tired? Worn out? Burned out on religion? Come to me. Get away with me and you'll recover your life. I'll show you how to take a real rest. Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won't lay anything heavy or ill-fitting on you. Keep company with me and you'll learn to live freely and lightly."
Matthew 11:28-30
Current dominant symptoms TODAY:
NAUSEA
DIZZINESS
ALL OVER PAIN
HEADACHE
WEAK FEELING
CONFUSION
MEMORY LOSS
CONCENTRATION DIFFICULTIES
EXTREME FATIGUE
ANXIOUS
HOT FLASHES
DIARRHEA
NUMBNESS IN LEGS
Monday, November 22, 2010
Don't fret or worry. Instead of worrying, pray. Let petitions and praises shape your worries into prayers, letting God know your concerns. Before you know it, a sense of God's wholeness, everything coming together for good, will come and settle you down. It's wonderful what happens when Christ displaces worry at the center of your life.
Philippians 4:6-7
Philippians 4:6-7
The support group was okay. More on that later.
My pain management doctor gave me Gabapentin, which is basically like Lyrica, except a lower dose or something like that. I am hesitant to try them. Since all this health stuff my body reacts horribly to pills. I end up extremely nauseous and sick most of the time. It's a gamble. About these pills I've read that some get depressed or suicidal, etc. Others find it to be helpful.
Still praying about whether or not to take them. I have this huge feeling not to. This whole time I have heard Abba telling me to change my lifestyle and that He alone is my physician.
We'll see.
My pain management doctor gave me Gabapentin, which is basically like Lyrica, except a lower dose or something like that. I am hesitant to try them. Since all this health stuff my body reacts horribly to pills. I end up extremely nauseous and sick most of the time. It's a gamble. About these pills I've read that some get depressed or suicidal, etc. Others find it to be helpful.
Still praying about whether or not to take them. I have this huge feeling not to. This whole time I have heard Abba telling me to change my lifestyle and that He alone is my physician.
We'll see.
Friday, November 19, 2010
Brief update:
Started getting boils on my legs. Got a prescription for some Silver Sulfadiazine cream and they seem to be going away now.
Have to go back to see my dermatologist next week to follow up with some labs. He thinks I may have bacteria. He also ordered copies of the labs I got last week at the clinic, which is grand because I haven't heard from the clinic since. Not surprising.
Had a pap done for the bleeding and she said irregular bleeding happens sometimes.
My blood pressure has been slightly high the last few appointments I've had, which is something to pay heed to as high blood pressure runs on both sides of my family and BOTH of my parents suffer from that (as well as diabetes).
Did too much yesterday. Had my annual NORC survey (been doing it since I was a teenager and I get $30!), and it was hard to concentrate this time. The interviewer asks a bunch of questions about jobs, school, finances, personal life, etc. I had to tell her about my fibro and explain that it is difficult to process things sometimes. Afterwards I did 2 loads of laundry and went through all of Mylie's clothes and took out what no longer fits, and then I cleaned out a small section of the closet floor.
Fibro is sneaky that way. I "feel" semi okay and so I do activity- it could be a walk to the mailbox, or cleaning, or whatever... mild or severe activity... and all of a sudden it feels like my muscles no longer work properly. It's like an electric pulse inside of my body that makes me feel shaky. The muscles are exhausted.
I have injections scheduled again for next Tuesday morning. Hope they work this time! My pain management doctor prescribed some pills but CMSP would not cover it. Walgreens called today saying the prescription is ready. We'll see what they gave me, and if it's going to help.
Tomorrow I am going to the support group for the first time. Pretty nervous!
Anyway, it rained today and so it smells all delicious outside.
More later!
Started getting boils on my legs. Got a prescription for some Silver Sulfadiazine cream and they seem to be going away now.
Have to go back to see my dermatologist next week to follow up with some labs. He thinks I may have bacteria. He also ordered copies of the labs I got last week at the clinic, which is grand because I haven't heard from the clinic since. Not surprising.
Had a pap done for the bleeding and she said irregular bleeding happens sometimes.
My blood pressure has been slightly high the last few appointments I've had, which is something to pay heed to as high blood pressure runs on both sides of my family and BOTH of my parents suffer from that (as well as diabetes).
Did too much yesterday. Had my annual NORC survey (been doing it since I was a teenager and I get $30!), and it was hard to concentrate this time. The interviewer asks a bunch of questions about jobs, school, finances, personal life, etc. I had to tell her about my fibro and explain that it is difficult to process things sometimes. Afterwards I did 2 loads of laundry and went through all of Mylie's clothes and took out what no longer fits, and then I cleaned out a small section of the closet floor.
Fibro is sneaky that way. I "feel" semi okay and so I do activity- it could be a walk to the mailbox, or cleaning, or whatever... mild or severe activity... and all of a sudden it feels like my muscles no longer work properly. It's like an electric pulse inside of my body that makes me feel shaky. The muscles are exhausted.
I have injections scheduled again for next Tuesday morning. Hope they work this time! My pain management doctor prescribed some pills but CMSP would not cover it. Walgreens called today saying the prescription is ready. We'll see what they gave me, and if it's going to help.
Tomorrow I am going to the support group for the first time. Pretty nervous!
Anyway, it rained today and so it smells all delicious outside.
More later!
Thursday, November 18, 2010
Tuesday, November 16, 2010
Got 2 care packages today. :)
Went to Pain Management appointment yesterday. The doctor said that we've done quite a few injections already (um yes we definitely have!) and he would do one more of the series that worked next week. He gave me a prescription for some pills but my insurance denied them.
Basically he said the pain is primarily coming from the Fibromyalgia, and the treatment he has been doing is for the hip bursitis and joint pain.
Still bleeding.
Also got a small bump filled with fluid on my leg last week. Today I have two more. I have an appointment with the dermatologist tomorrow to check them out.
That's my brief update.
Went to Pain Management appointment yesterday. The doctor said that we've done quite a few injections already (um yes we definitely have!) and he would do one more of the series that worked next week. He gave me a prescription for some pills but my insurance denied them.
Basically he said the pain is primarily coming from the Fibromyalgia, and the treatment he has been doing is for the hip bursitis and joint pain.
Still bleeding.
Also got a small bump filled with fluid on my leg last week. Today I have two more. I have an appointment with the dermatologist tomorrow to check them out.
That's my brief update.
Wednesday, November 10, 2010
I found a support group that meets at a hospital once a month in Vacaville for fibromyalgia sufferers. The woman I spoke with on the phone yesterday is 70 and she said a group of about 10 ladies meets to share their stories. Most of them are believers, which is amazing and exactly what I've been praying for. Thank you Jesus for hooking it up :)
I went to see my primary doctor yesterday (she is actually a nurse) and updated her on everything that has been going on since May. That was the last time I saw her. I asked for more current labs and she said last time she "labbed me all up" and wouldn't do all of them again. One thing she failed to tell me from the last labs is that my glucose level was high and since diabetes runs on both sides of my family and both of my parents have it- that is definitely something to pay attention to.
She agreed to run tests for hormones, blood sugar, and rheumatoid arthritis again.
I told her that I have been treating the fibro on my own since no one will treat me, and also told her about the support group. She asked if I would like to speak with the behaviorist I saw for the psych evaluation a couple of months ago. I said yes. I would like to talk to someone about what I am going through. It's hard and wacky, and I can use the perspective.
I got a referral to a gynocologist for the bleeding. The thing is that the appointment is not until January. That's two months away! Good thing I can go elsewhere next week and get an exam. Since I had Cancer growth in 2005 I don't like to mess around with that stuff.
The other night Mylie and Aaron were combing my hair. Suddenly Mylie cupped my face and said, "I've never seen you before." Than she said she was the spirit of God. It was surreal. I felt like Jesus was speaking to me through her. The way her eyes stared so deeply. Sometimes it seems like she is a little adult. She says words like "toiletries" and "actually"... she even copies me and says "well this is not pleasing." She's just simply amazing and smart!
I went to see my primary doctor yesterday (she is actually a nurse) and updated her on everything that has been going on since May. That was the last time I saw her. I asked for more current labs and she said last time she "labbed me all up" and wouldn't do all of them again. One thing she failed to tell me from the last labs is that my glucose level was high and since diabetes runs on both sides of my family and both of my parents have it- that is definitely something to pay attention to.
She agreed to run tests for hormones, blood sugar, and rheumatoid arthritis again.
I told her that I have been treating the fibro on my own since no one will treat me, and also told her about the support group. She asked if I would like to speak with the behaviorist I saw for the psych evaluation a couple of months ago. I said yes. I would like to talk to someone about what I am going through. It's hard and wacky, and I can use the perspective.
I got a referral to a gynocologist for the bleeding. The thing is that the appointment is not until January. That's two months away! Good thing I can go elsewhere next week and get an exam. Since I had Cancer growth in 2005 I don't like to mess around with that stuff.
The other night Mylie and Aaron were combing my hair. Suddenly Mylie cupped my face and said, "I've never seen you before." Than she said she was the spirit of God. It was surreal. I felt like Jesus was speaking to me through her. The way her eyes stared so deeply. Sometimes it seems like she is a little adult. She says words like "toiletries" and "actually"... she even copies me and says "well this is not pleasing." She's just simply amazing and smart!
Thursday, November 4, 2010
Wednesday, November 3, 2010
Quick Update
-chocolate and me no longer mesh. :(
-earplugs are AWESOME during the day.
-I got more injections today. Not fun, but we'll see what happens. Been having a blast of pain that shoots every 2-4 minutes ever since I got the injections earlier.
-been incredibly chilly. I am usually hot easily, but lately I have been FREEZING. Especially my feet, hands, and nose.
-found a support group that meets in Vacaville 2x a month. I am going to try it out soon.
-got a library book that I have been waiting for. Yaye!
-been watching The wonder Years re-runs.
-earplugs are AWESOME during the day.
-I got more injections today. Not fun, but we'll see what happens. Been having a blast of pain that shoots every 2-4 minutes ever since I got the injections earlier.
-been incredibly chilly. I am usually hot easily, but lately I have been FREEZING. Especially my feet, hands, and nose.
-found a support group that meets in Vacaville 2x a month. I am going to try it out soon.
-got a library book that I have been waiting for. Yaye!
-been watching The wonder Years re-runs.
Monday, November 1, 2010
November
Haven't been so grand lately.
The pain is intense.
I get cold way too easily.
My emotions have fallen prey to the constant demands of being sick EVERY SINGLE DAY. I have found myself angry, snappish, insecure (HUGE to admit), and suspicious. I feel guilty all the time for not being "me." For having different needs now. For not being "on the ball" in a long, long time. I was starting to doubt everyone. The desire to pull away from all the people in my life has been thick. I don't want to explain anymore, or have people judge me, or think that I should be at a place mentally or physically that I just am not.
Problem?
I have been assuming that I have been a burden.
I have been assuming I know how those closest to me are feeling towards me or about my situation.
I have been assuming that I know things I don't know.
This became apparent this last week as I felt myself in the midst of an emotional anxiety and insecurity that was all consuming. I had NEVER felt like that before. Seriously. It all came out last night in tears and anger and irrational behavior that I knew was irrational, but I couldn't stop. It was like emotional vomit galore. Thankfully I have an amazing friend who talked with me and who works hard at understanding the maddening frenzy of fibromyalgia. It makes a world of difference.
When a moment hits that is so overwhelming (made so much worse by PMS) I cannot stop. The floodgates are open! Tears may occur, or anger, or pure elation. It depends on what's happening.
The noises, smells, and sounds sometimes get to be so much. I read online that is because the brain is processing everything as danger. That's why I jump at the slightest movement, why it sounds like noises are right inside of my head, lights (even from the TV) cause me to recoil and shut my eyes, and I cannot function when too much is going on. It doesn't have to be in the room with me... I can smell and hear as if that siren is right inside of me.
Also discovered that with fibro the cells in my body are working overtime to compensate for the damaged, overworked muscles from daily wear and also from the not being able to sleep. Since most nights I cannot achieve full REM sleep, the muscles do not get to heal. This is a vicious cycle wherein, an already depleted system is working overtime to "fix" the problem. Since the problem is me and my wiring and the brain's inability to stop all the signals and reactions, plus all the other bodily functions not working well either, my body is constantly trying to fight with no fight in it. Weird. It's like trying to drive a car with no gas.
Today the dryer was going, Mylie was talking to me, my Aunt was speaking to me over the phone (I try to avoid phone conversations as the experience leaves me completely drained and requires energy that my body lacks. The muscles in my neck become strained and ache, and I can't fight the wave of irritation that swims over me.) and the TV was on. I had to turn off the TV, turn off the dryer, and wrap the conversation up quick.
I put in the earplugs.
:)
For some reason it did not occur to me that I could use these lovely things during daylight. They work beautifully! I can hear, and it's still loud, but it's also a relief! All of the things around me are not screaming for my attention. This must be what it is like with normal hearing. :) I do not hear EVERY crinkle, footstep, etc.
It's like a vacation for my eardrums!
Since my FREAKOUT galore last night I have been musing on everything. I compiled a list of things I am thinking about. I have been in a grieving process for about 4 months. Sick for almost a year, but not knowing it was fibro until around June/July means this is all very fresh. I did not realize the sense of loss that accompanies a chronic condition. The world has changed for me. This is new. This is something I am going through RIGHT NOW. It's a work in progress.
Side note: my medical goal right now is not to see the rheumatologist for medication to treat fibro. I have read numerous articles about the 2 main prescriptions they give for fibro and I do not want cymbalta or lyrica. Most people report that both do not have long term benefits. There are side effects that are terrible, and quite honestly, I've never been one for pills. These patients primarily report that symptoms fade for a day or two and than come back with a vengeance. I'd rather alter my life to a condition that is long-term. Life. Until Jesus heals me, I am stuck with this thing. There is no magic cure. There is no 24 hour fix. I take supplements and I am changing my lifestyle as I discover what my body and mind will allow, however, I refuse to take pills that will potentially hinder me and enhance the negative aspects of a chronic condition. No thanks. So, my goal in finally landing an appointment with a rheumatologist is to rule out other possible health issues. I want recent lab work (my last labs were in May), and I want to verify that another disease is not demanding attention. Usually fibro is secondary to a primary medical condition. We'll see.
So here is a list (so far)of what I am committed to changing:
I WILL-
-change my speech to include the positive things in my day.
-refocus my mind to train on things of substance, virtue, and godliness.
-keep my priorities in check and eliminate what is not crucial.
-spend more time thinking and speaking of happy things vs. continually talking about what is happening to me.
-take frequent breaks if needed.
-wear these earplugs a lot during the day.
-incorporate some form of extremely moderate exercise back into my life.
-be realistic about my goals and limitations.
-take "time-outs" in order to collect myself whilst overwhelmed.
-recognize, admit, accept, and grow vs. not over think or dwell on the fact that sometimes I will snap unwillingly. I will apologize and move on.
-speak about my pain only when asked and keep it brief. (Example: "I'm out of commission").
-attempt to engage with others vs. the continued pull to isolate. It's hard to talk to people- my mind has issues processing their words and other noises (be it the hum of a fridge or the sound of a fan) make it harder.
-be clear and honest about what I can and cannot bear during a "bad spell."
i.e. no visitors without prior notice, not explaining directions or giving instructions (it scrambles me up and a feeling of panic and intense impatience and annoyance happens without warrant), be CLEAR and firm about how being on the phone is not okay right now (obviously appointments and family calls or whatever will come up, but this MUST be extremely limited) and that text or email is what I can do right now.
-eliminate ALL stressful forms of media. Watching dramatic, angsty, or violent images DOES produce a physical reaction.
-find (or develop) a chronic illness support group.
-journal my negative feelings (and pray with more intensity) so as not to feel overwhelmed and snap later.
-work on accepting each new challenge and be verbal (with my people) about the limitation.
-NOT FEEL GUILTY for being sick (HARDEST ONE on this list).
-change my eating habits to eliminate sugars and caffeine and carbs. Doing so will help reduce inflammation and such.
That's it for now. If more goals arise, I will try to remember to post them.
Current state of sick:
legs are cramping
bloated (my Auntie asked if I have edema)
fatigue
pain everywhere (*Important to note: the pain moves all over the body. It has no favorites. If I am touched on my leg, I may feel the intense pain in my ribs. It moves and shifts each moment, so I may appear "fine" and suddenly be bent over in extreme pain. I cannot control it. It's way inside.)
super duper sensitive to sound today. More than usual. Yikes.
mentally drained
After my immature freak out last night I am due for some silence. I am embarrassed and appalled that I could act that way. New day, new way.
It's a wild terrain. ;)
Goodnight!
The pain is intense.
I get cold way too easily.
My emotions have fallen prey to the constant demands of being sick EVERY SINGLE DAY. I have found myself angry, snappish, insecure (HUGE to admit), and suspicious. I feel guilty all the time for not being "me." For having different needs now. For not being "on the ball" in a long, long time. I was starting to doubt everyone. The desire to pull away from all the people in my life has been thick. I don't want to explain anymore, or have people judge me, or think that I should be at a place mentally or physically that I just am not.
Problem?
I have been assuming that I have been a burden.
I have been assuming I know how those closest to me are feeling towards me or about my situation.
I have been assuming that I know things I don't know.
This became apparent this last week as I felt myself in the midst of an emotional anxiety and insecurity that was all consuming. I had NEVER felt like that before. Seriously. It all came out last night in tears and anger and irrational behavior that I knew was irrational, but I couldn't stop. It was like emotional vomit galore. Thankfully I have an amazing friend who talked with me and who works hard at understanding the maddening frenzy of fibromyalgia. It makes a world of difference.
When a moment hits that is so overwhelming (made so much worse by PMS) I cannot stop. The floodgates are open! Tears may occur, or anger, or pure elation. It depends on what's happening.
The noises, smells, and sounds sometimes get to be so much. I read online that is because the brain is processing everything as danger. That's why I jump at the slightest movement, why it sounds like noises are right inside of my head, lights (even from the TV) cause me to recoil and shut my eyes, and I cannot function when too much is going on. It doesn't have to be in the room with me... I can smell and hear as if that siren is right inside of me.
Also discovered that with fibro the cells in my body are working overtime to compensate for the damaged, overworked muscles from daily wear and also from the not being able to sleep. Since most nights I cannot achieve full REM sleep, the muscles do not get to heal. This is a vicious cycle wherein, an already depleted system is working overtime to "fix" the problem. Since the problem is me and my wiring and the brain's inability to stop all the signals and reactions, plus all the other bodily functions not working well either, my body is constantly trying to fight with no fight in it. Weird. It's like trying to drive a car with no gas.
Today the dryer was going, Mylie was talking to me, my Aunt was speaking to me over the phone (I try to avoid phone conversations as the experience leaves me completely drained and requires energy that my body lacks. The muscles in my neck become strained and ache, and I can't fight the wave of irritation that swims over me.) and the TV was on. I had to turn off the TV, turn off the dryer, and wrap the conversation up quick.
I put in the earplugs.
:)
For some reason it did not occur to me that I could use these lovely things during daylight. They work beautifully! I can hear, and it's still loud, but it's also a relief! All of the things around me are not screaming for my attention. This must be what it is like with normal hearing. :) I do not hear EVERY crinkle, footstep, etc.
It's like a vacation for my eardrums!
Since my FREAKOUT galore last night I have been musing on everything. I compiled a list of things I am thinking about. I have been in a grieving process for about 4 months. Sick for almost a year, but not knowing it was fibro until around June/July means this is all very fresh. I did not realize the sense of loss that accompanies a chronic condition. The world has changed for me. This is new. This is something I am going through RIGHT NOW. It's a work in progress.
Side note: my medical goal right now is not to see the rheumatologist for medication to treat fibro. I have read numerous articles about the 2 main prescriptions they give for fibro and I do not want cymbalta or lyrica. Most people report that both do not have long term benefits. There are side effects that are terrible, and quite honestly, I've never been one for pills. These patients primarily report that symptoms fade for a day or two and than come back with a vengeance. I'd rather alter my life to a condition that is long-term. Life. Until Jesus heals me, I am stuck with this thing. There is no magic cure. There is no 24 hour fix. I take supplements and I am changing my lifestyle as I discover what my body and mind will allow, however, I refuse to take pills that will potentially hinder me and enhance the negative aspects of a chronic condition. No thanks. So, my goal in finally landing an appointment with a rheumatologist is to rule out other possible health issues. I want recent lab work (my last labs were in May), and I want to verify that another disease is not demanding attention. Usually fibro is secondary to a primary medical condition. We'll see.
So here is a list (so far)of what I am committed to changing:
I WILL-
-change my speech to include the positive things in my day.
-refocus my mind to train on things of substance, virtue, and godliness.
-keep my priorities in check and eliminate what is not crucial.
-spend more time thinking and speaking of happy things vs. continually talking about what is happening to me.
-take frequent breaks if needed.
-wear these earplugs a lot during the day.
-incorporate some form of extremely moderate exercise back into my life.
-be realistic about my goals and limitations.
-take "time-outs" in order to collect myself whilst overwhelmed.
-recognize, admit, accept, and grow vs. not over think or dwell on the fact that sometimes I will snap unwillingly. I will apologize and move on.
-speak about my pain only when asked and keep it brief. (Example: "I'm out of commission").
-attempt to engage with others vs. the continued pull to isolate. It's hard to talk to people- my mind has issues processing their words and other noises (be it the hum of a fridge or the sound of a fan) make it harder.
-be clear and honest about what I can and cannot bear during a "bad spell."
i.e. no visitors without prior notice, not explaining directions or giving instructions (it scrambles me up and a feeling of panic and intense impatience and annoyance happens without warrant), be CLEAR and firm about how being on the phone is not okay right now (obviously appointments and family calls or whatever will come up, but this MUST be extremely limited) and that text or email is what I can do right now.
-eliminate ALL stressful forms of media. Watching dramatic, angsty, or violent images DOES produce a physical reaction.
-find (or develop) a chronic illness support group.
-journal my negative feelings (and pray with more intensity) so as not to feel overwhelmed and snap later.
-work on accepting each new challenge and be verbal (with my people) about the limitation.
-NOT FEEL GUILTY for being sick (HARDEST ONE on this list).
-change my eating habits to eliminate sugars and caffeine and carbs. Doing so will help reduce inflammation and such.
That's it for now. If more goals arise, I will try to remember to post them.
Current state of sick:
legs are cramping
bloated (my Auntie asked if I have edema)
fatigue
pain everywhere (*Important to note: the pain moves all over the body. It has no favorites. If I am touched on my leg, I may feel the intense pain in my ribs. It moves and shifts each moment, so I may appear "fine" and suddenly be bent over in extreme pain. I cannot control it. It's way inside.)
super duper sensitive to sound today. More than usual. Yikes.
mentally drained
After my immature freak out last night I am due for some silence. I am embarrassed and appalled that I could act that way. New day, new way.
It's a wild terrain. ;)
Goodnight!
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