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!
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!
Monday, October 25, 2010
Sleepwalking
I'm not literally sleepwalking, though many times it sure does feel like it. I just didn't know what to title this entry.
I woke up this morning super agitated. It's hard to get sleep- as my body repeatedly wakes me up. These past couple of nights I have actually been getting more than 2 or 3 hours at a time which is fantastic.
This morning I felt GRUMPY! I did not want to wake up at 8, but there was a soothie to be made, a pull-up to change (twice), and the small voice: "Auntie Janet?"
I had another muscle spasm around my ribs while lifting Mylie onto the bed. Than we fell back asleep (some days it works and other days it doesn't). I heard someone banging on a neighbor's door for a long while, someone mowing the grass outside our window, and the upstairs neighbor vaccuuming. In case you forgot, I somehow have super sonic hearing these days. Ha, not really. I do hear things SUPER loud though. It can be a bit away and it's unbearable in my head.
So now I feel better. There's a few funky things stirring around in my spirit though. I am trying to stay positive. I believe God is faithful to me through this. No doubt, but I am also honest and will admit I have my days of anger or sadness or discouragement. I also have days where I feel completely happy and elated at life. In between these two extremes my joy is constant. Joy and happiness are two different things. Happiness is fleeting and it comes and goes. Joy is something I have in Christ alone and NO ONE can steal that from me. No person, illness, or thing can take that good deposit in my spirit. Thank you, Abba, for that. :) But like I said, I will not pretend and act like I am constantly happy to be going through this trial. That would be a lie, and I see it a lot in people who are believers. It's okay to say you are hurting or discouraged. That doesn't mean you love Jesus any less. It doesn't mean your are any less a believer. We don't have to always be okay. In fact, Jesus took the time to grieve with people. To cry with those who hurt. Since we love Him, and seek to become like Him, should we dismiss this part of His character?
It's an encouragement to have someone sit beside me on my worst day. No words needed. If you have a verse to share, thank you. If you want to pray for me, thank you. That's it. Simple. Effective. It ministers to a heart far more to sit in silence, letting the Holy Spirit soothe with His balm, than to give advice or a pep talk. Honestly.
I am in transition. A couple of weeks ago I was at my lowest point. EVER. Not just with this trial, but in my life. I felt like the darkness would last forever. But it didn't. With my cry to God : "Daddy, I can't do this anymore!" came a fresh wave of His grace and love. Colors became bright again. Sounds became delightful. Did He ever leave me? No way. Did He remain even while I felt alone? Oh yes. But I was so embroiled in my own fear and bitterness that I was not inviting Him to grieve with me.
God does NOT want me sick. He doesn't want YOU sick. No way. But He will use this pain... this situation to bring about good. Things in my character are being refined. Insecurities brought right up and being dealt with. I am splayed open on a table and Doctor God is doing a miracle work. Better than any earthly physician. Better than any test results. I have finally understood that it doesn't matter.
IT DOESN'T MATTER.
If the test results come back with unappealing results.
If one remains barren.
If Mr. and Mrs. Bland don't get the house.
If they lose the house.
If we know Jesus. If we are intimate with Him. Not just attending church, reading our Bible's to cross off of the to-do list, and serve because we are supposed to... speaking Christianese to appear like we are spiritual...
IF we have a continuous love relationship with the Savior of the world, than none of those things matter.
They hurt. They get us in a tizzy. I am the first to admit that. When I say it doesn't matter, I am not saying our pain doesn't matter. That definitely matters. But taking our pain and bringing it to the feet of Jesus is what makes it all fade away. In that stillness we find peace and rest and comfort.
Our God is not a genie in a bottle. Things are not always going to go according to our 10 year plan. If you are a believer that is a given. The devil will trip us up, and we will trip ourselves up, but as long as we continue to cry out and ask the Lord to show us His face, to be with us, to grow us, to build our faith- then all of that becomes white noise.
We can approach boldly his throne.
Romans 8:28
And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.
Flourish in His grace.
Delight in His presence.
Mark 6:31
And He said to them, "Come away by yourselves to a lonely place and rest a while." For there were many people coming and going, and they did not even have time to eat.
Psalm 23
The LORD is my shepherd, I shall not want. He makes me lie down in green pastures; He leads me beside quiet waters. He restores my soul; He guides me in the paths of righteousness For His name's sake. Even though I walk through the valley of the shadow of death, I fear no evil; for Thou art with me; Thy rod and Thy staff, they comfort me. Thou dost prepare a table before me in the presence of my enemies; Thou hast anointed my head with oil; My cup overflows. Surely goodness and lovingkindness will follow me all the days of my life, And I will dwell in the house of the LORD forever.
Exodus 33:14
And He said, "My presence shall go with you, and I will give you rest."
Matthew 11:28-30
"Come to Me, all who are weary and heavy-laden, 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 shall find rest for your souls. "For My yoke is easy, and My load is light."
Psalm 37:7
Rest in the LORD and wait patiently for Him; Do not fret because of him who prospers in his way, Because of the man who carries out wicked schemes.
John 14:27
"Peace I leave with you; My peace I give to you; not as the world gives, do I give to you. Let not your heart be troubled, nor let it be fearful.
Philippians 4:6-7
Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, shall guard your hearts and your minds in Christ Jesus.
Enjoy!
I woke up this morning super agitated. It's hard to get sleep- as my body repeatedly wakes me up. These past couple of nights I have actually been getting more than 2 or 3 hours at a time which is fantastic.
This morning I felt GRUMPY! I did not want to wake up at 8, but there was a soothie to be made, a pull-up to change (twice), and the small voice: "Auntie Janet?"
I had another muscle spasm around my ribs while lifting Mylie onto the bed. Than we fell back asleep (some days it works and other days it doesn't). I heard someone banging on a neighbor's door for a long while, someone mowing the grass outside our window, and the upstairs neighbor vaccuuming. In case you forgot, I somehow have super sonic hearing these days. Ha, not really. I do hear things SUPER loud though. It can be a bit away and it's unbearable in my head.
So now I feel better. There's a few funky things stirring around in my spirit though. I am trying to stay positive. I believe God is faithful to me through this. No doubt, but I am also honest and will admit I have my days of anger or sadness or discouragement. I also have days where I feel completely happy and elated at life. In between these two extremes my joy is constant. Joy and happiness are two different things. Happiness is fleeting and it comes and goes. Joy is something I have in Christ alone and NO ONE can steal that from me. No person, illness, or thing can take that good deposit in my spirit. Thank you, Abba, for that. :) But like I said, I will not pretend and act like I am constantly happy to be going through this trial. That would be a lie, and I see it a lot in people who are believers. It's okay to say you are hurting or discouraged. That doesn't mean you love Jesus any less. It doesn't mean your are any less a believer. We don't have to always be okay. In fact, Jesus took the time to grieve with people. To cry with those who hurt. Since we love Him, and seek to become like Him, should we dismiss this part of His character?
It's an encouragement to have someone sit beside me on my worst day. No words needed. If you have a verse to share, thank you. If you want to pray for me, thank you. That's it. Simple. Effective. It ministers to a heart far more to sit in silence, letting the Holy Spirit soothe with His balm, than to give advice or a pep talk. Honestly.
I am in transition. A couple of weeks ago I was at my lowest point. EVER. Not just with this trial, but in my life. I felt like the darkness would last forever. But it didn't. With my cry to God : "Daddy, I can't do this anymore!" came a fresh wave of His grace and love. Colors became bright again. Sounds became delightful. Did He ever leave me? No way. Did He remain even while I felt alone? Oh yes. But I was so embroiled in my own fear and bitterness that I was not inviting Him to grieve with me.
God does NOT want me sick. He doesn't want YOU sick. No way. But He will use this pain... this situation to bring about good. Things in my character are being refined. Insecurities brought right up and being dealt with. I am splayed open on a table and Doctor God is doing a miracle work. Better than any earthly physician. Better than any test results. I have finally understood that it doesn't matter.
IT DOESN'T MATTER.
If the test results come back with unappealing results.
If one remains barren.
If Mr. and Mrs. Bland don't get the house.
If they lose the house.
If we know Jesus. If we are intimate with Him. Not just attending church, reading our Bible's to cross off of the to-do list, and serve because we are supposed to... speaking Christianese to appear like we are spiritual...
IF we have a continuous love relationship with the Savior of the world, than none of those things matter.
They hurt. They get us in a tizzy. I am the first to admit that. When I say it doesn't matter, I am not saying our pain doesn't matter. That definitely matters. But taking our pain and bringing it to the feet of Jesus is what makes it all fade away. In that stillness we find peace and rest and comfort.
Our God is not a genie in a bottle. Things are not always going to go according to our 10 year plan. If you are a believer that is a given. The devil will trip us up, and we will trip ourselves up, but as long as we continue to cry out and ask the Lord to show us His face, to be with us, to grow us, to build our faith- then all of that becomes white noise.
We can approach boldly his throne.
Romans 8:28
And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.
Flourish in His grace.
Delight in His presence.
Mark 6:31
And He said to them, "Come away by yourselves to a lonely place and rest a while." For there were many people coming and going, and they did not even have time to eat.
Psalm 23
The LORD is my shepherd, I shall not want. He makes me lie down in green pastures; He leads me beside quiet waters. He restores my soul; He guides me in the paths of righteousness For His name's sake. Even though I walk through the valley of the shadow of death, I fear no evil; for Thou art with me; Thy rod and Thy staff, they comfort me. Thou dost prepare a table before me in the presence of my enemies; Thou hast anointed my head with oil; My cup overflows. Surely goodness and lovingkindness will follow me all the days of my life, And I will dwell in the house of the LORD forever.
Exodus 33:14
And He said, "My presence shall go with you, and I will give you rest."
Matthew 11:28-30
"Come to Me, all who are weary and heavy-laden, 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 shall find rest for your souls. "For My yoke is easy, and My load is light."
Psalm 37:7
Rest in the LORD and wait patiently for Him; Do not fret because of him who prospers in his way, Because of the man who carries out wicked schemes.
John 14:27
"Peace I leave with you; My peace I give to you; not as the world gives, do I give to you. Let not your heart be troubled, nor let it be fearful.
Philippians 4:6-7
Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, shall guard your hearts and your minds in Christ Jesus.
Enjoy!
Friday, October 22, 2010
Friday
Today is a rough day physically, but a good one mentally.
-Got a package from my mom. These packages are like boxes of love that aid in helping me feel better, and less alone as I feel sick everyday. Thanks to my mom for always thinking of me!
-Mains symptoms this week (especially today):
*Nausea
*Pain all over- especially in my back and on my sides. The right is particularly brutal.
*Inability to sleep for more than 2 hours at a time. Not good!
*IBS is acting out of control. That is partially my fault as I did indulge in Panda Express last night.
*Fatigue- as always.
*Hard to concentrate.
-The weather is perfect. Crisp, cool, and a chance of rain. My absolute favorite.
-Today I already collected the trash, started laundry, got Mylie dressed, fed her breakfast and lunch, walked to the office to get the package (which is far and very difficult to do, but yaye, I did it!) and made various phone calls to doctors and family. It's hard to do all of that. Now I am sapped of any faux energy I started today with. Thank goodness it's Friday!
-I am reading a book about fibromyalgia and starting to understand it better now. I will post some of my notes on here later.
More later <3
-Got a package from my mom. These packages are like boxes of love that aid in helping me feel better, and less alone as I feel sick everyday. Thanks to my mom for always thinking of me!
-Mains symptoms this week (especially today):
*Nausea
*Pain all over- especially in my back and on my sides. The right is particularly brutal.
*Inability to sleep for more than 2 hours at a time. Not good!
*IBS is acting out of control. That is partially my fault as I did indulge in Panda Express last night.
*Fatigue- as always.
*Hard to concentrate.
-The weather is perfect. Crisp, cool, and a chance of rain. My absolute favorite.
-Today I already collected the trash, started laundry, got Mylie dressed, fed her breakfast and lunch, walked to the office to get the package (which is far and very difficult to do, but yaye, I did it!) and made various phone calls to doctors and family. It's hard to do all of that. Now I am sapped of any faux energy I started today with. Thank goodness it's Friday!
-I am reading a book about fibromyalgia and starting to understand it better now. I will post some of my notes on here later.
More later <3
Tuesday, October 19, 2010
Denied
The difficulty in being able to see a rheumatologist has been immense. I am lucky to have free health care, but it is a difficult system to be within, especially with a chronic health condition. There are 2 establishments that will take CMSP and I was denied twice at UC Davis, and today I found out I was denied at UCSF.
The reason?
They don't treat people with fibro.
I know.
It's insane! The very doctor that is supposed to "officially" diagnose me (though I have been diagnosed "unofficially" 2 times already) and treat me for my condition, is the one doctor that won't treat me for it.
I am trying to wrap my head around that one.
I asked if I could do anything to be seen, and the lady told me that I can have my other medical records (from the dermatologist and pain management doctor) faxed to UCSF and the doctor would review my case again, and if there is potentially another illness (which is what I am trying to rule out, since fibro is usually accompanied with another autoimmune disease)than they will see me.
It's bananas.
So I called Amber at the clinic and left a lengthy message for her. She's the medical assistant who cared enough to aid me when my own primary nurse and her assistant dismissed me and ignored my calls. I had asked Amber if we should get those medical records sent too, since my most current ones at the clinic are from May, but she didn't think it was necessary.
It was necessary.
I also made an appointment with my primary nurse. The soonest isn't until November 9th, and I am almost positive that my experience with her will be the same. She is quite quick to dismiss me and does not listen. I have tried to see another primary... an actual doctor... but they will not ever let me. I am still going to try to get some current blood work done. I want to make sure I am still negative for lupus, check my inflammation, and other levels. Please pray she will allow me to get these tests done. It's like pulling teeth at this place.
I also called Kaiser and left a message for my old provider there. He was a great doctor, until I lost my Kaiser membership. That was an ordeal. I had gone in one morning to see him after being up all night in pain and vomiting, and when I saw him he was a complete jerk. No lie, no exaggeration. Because I no longer had the precious membership to the facility he dismissed me too, whereas before that he'd been super involved in helping me diagnose my ailments. So I have not talked to him or seen him since, but I am asking him for a copy of a letter he wrote when I was applying for the medical assistance program at Kaiser. The letter had to specifically state that I need long term care at a Kaiser facility. My purpose in requesting this is the hope that I can obtain a copy, and reapply. Maybe than I will be able to see a rheumatologist and rule out other conditions, and get proper treatment for the fibromayalgia.
I was at my lowest point a few days ago, and I am now at a point where I am looking up. I will not let this current NO dictate my day. I am going to focus on the positive and be grateful that I can utilize technology to leave messages and ask for things that could possibly aid me in the near future.
It would be far too easy to give in to feelings of discouragement and helplessness, but I say no to that junk, and am hoping and praying for better news tomorrow or soon.
I am also trying to figure out if I need to reapply for EBT. I was told when I went in that I do not, but it is supposed to expire in November. Since I am unable to work (except for caring for Mylie, but that is not my job, that is my life)it is very important that I continue receiving EBT.
So much going on, and so little energy to do it.
I actually slept a bit longer last night. My back has been in more pain than usual, and the fog is thick in my head. I am going to try to take a nap as I have been pushing myself these last few days on little sleep, and no energy.
Oh- my tv crutch has been rearing it's head. I've been battling it though. Last night I stumbled on a new channel called HUB. They are showing Family Ties and Wonder Years. I LOVE those shows, and it goes under Who's the Boss for all time favorites. :) So, thank goodness for classic 80's tv that is way more simple, a lot less vulgar, and that brings me comfort from my childhood when I feel so yucky.
Praying about:
-starting the book I've always wanted to write.
-I cannot find any fibro support groups that meet around here. Thinking of starting my own group/Bible study for chronic illnesses.
-possibly writing Worship songs.
:)
Until next time!
Deuteronomy 2:7
"For the LORD your God has blessed you in all that you have done; He has known your wanderings through this great wilderness. These forty years the LORD your God has been with you; you have not lacked a thing."'
Matthew 25:34-40 (New International Version)
"Then the King will say to those on his right, 'Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.'
"Then the righteous will answer him, 'Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? When did we see you a stranger and invite you in, or needing clothes and clothe you? When did we see you sick or in prison and go to visit you?'
"The King will reply, 'I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.'
The reason?
They don't treat people with fibro.
I know.
It's insane! The very doctor that is supposed to "officially" diagnose me (though I have been diagnosed "unofficially" 2 times already) and treat me for my condition, is the one doctor that won't treat me for it.
I am trying to wrap my head around that one.
I asked if I could do anything to be seen, and the lady told me that I can have my other medical records (from the dermatologist and pain management doctor) faxed to UCSF and the doctor would review my case again, and if there is potentially another illness (which is what I am trying to rule out, since fibro is usually accompanied with another autoimmune disease)than they will see me.
It's bananas.
So I called Amber at the clinic and left a lengthy message for her. She's the medical assistant who cared enough to aid me when my own primary nurse and her assistant dismissed me and ignored my calls. I had asked Amber if we should get those medical records sent too, since my most current ones at the clinic are from May, but she didn't think it was necessary.
It was necessary.
I also made an appointment with my primary nurse. The soonest isn't until November 9th, and I am almost positive that my experience with her will be the same. She is quite quick to dismiss me and does not listen. I have tried to see another primary... an actual doctor... but they will not ever let me. I am still going to try to get some current blood work done. I want to make sure I am still negative for lupus, check my inflammation, and other levels. Please pray she will allow me to get these tests done. It's like pulling teeth at this place.
I also called Kaiser and left a message for my old provider there. He was a great doctor, until I lost my Kaiser membership. That was an ordeal. I had gone in one morning to see him after being up all night in pain and vomiting, and when I saw him he was a complete jerk. No lie, no exaggeration. Because I no longer had the precious membership to the facility he dismissed me too, whereas before that he'd been super involved in helping me diagnose my ailments. So I have not talked to him or seen him since, but I am asking him for a copy of a letter he wrote when I was applying for the medical assistance program at Kaiser. The letter had to specifically state that I need long term care at a Kaiser facility. My purpose in requesting this is the hope that I can obtain a copy, and reapply. Maybe than I will be able to see a rheumatologist and rule out other conditions, and get proper treatment for the fibromayalgia.
I was at my lowest point a few days ago, and I am now at a point where I am looking up. I will not let this current NO dictate my day. I am going to focus on the positive and be grateful that I can utilize technology to leave messages and ask for things that could possibly aid me in the near future.
It would be far too easy to give in to feelings of discouragement and helplessness, but I say no to that junk, and am hoping and praying for better news tomorrow or soon.
I am also trying to figure out if I need to reapply for EBT. I was told when I went in that I do not, but it is supposed to expire in November. Since I am unable to work (except for caring for Mylie, but that is not my job, that is my life)it is very important that I continue receiving EBT.
So much going on, and so little energy to do it.
I actually slept a bit longer last night. My back has been in more pain than usual, and the fog is thick in my head. I am going to try to take a nap as I have been pushing myself these last few days on little sleep, and no energy.
Oh- my tv crutch has been rearing it's head. I've been battling it though. Last night I stumbled on a new channel called HUB. They are showing Family Ties and Wonder Years. I LOVE those shows, and it goes under Who's the Boss for all time favorites. :) So, thank goodness for classic 80's tv that is way more simple, a lot less vulgar, and that brings me comfort from my childhood when I feel so yucky.
Praying about:
-starting the book I've always wanted to write.
-I cannot find any fibro support groups that meet around here. Thinking of starting my own group/Bible study for chronic illnesses.
-possibly writing Worship songs.
:)
Until next time!
Deuteronomy 2:7
"For the LORD your God has blessed you in all that you have done; He has known your wanderings through this great wilderness. These forty years the LORD your God has been with you; you have not lacked a thing."'
Matthew 25:34-40 (New International Version)
"Then the King will say to those on his right, 'Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.'
"Then the righteous will answer him, 'Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? When did we see you a stranger and invite you in, or needing clothes and clothe you? When did we see you sick or in prison and go to visit you?'
"The King will reply, 'I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.'
Monday, October 18, 2010
Revelation
I was texting with my friend who just found out today that she has chronic fatigue syndrome. It's a bit like fibro. As I was speaking with her the Lord was pouring more oil on me! It was amazing. By that I mean that the words He was giving me were also speaking to me. Through me and to me. Only He can do that. I get no credit for what He is doing in my life. He amazes me so completely. One day I am crying my eyes out, and the lights are off inside, and I feel so desolate and insecure and out of control with grief and panic and fear. Suddenly He comes in and peace washes over. I am left to wonder, would I feel that stillness, this light, His beauty ALL the time if I ALWAYS invited it in?
That's a startling question. Life is life. It's busy, distracting. I read my Bible everyday, I pray... but how many times am I halfheartedly involved? How much of the time is spent inviting the Holy Spirit in completely and trusting that He will show up?
Because we have a continual knowledge that He is with us. We pray, we know He is in control, but we still try to take over. We still try to do what we can to make Him be God. Whew. that's great stuff right there!
It's been BRUTAL lately. I'm talking tantrums, yucky behavior, sobbing, etc. and only today do I realize that I am NOT broken, I am being broken in. Wow.
Savor that with me.
I AM NOT BROKEN, I AM BEING BROKEN IN.
I feel guilty everyday for not being the old me. I feel bad for needing help. That's been a huge stronghold. Not allowing others to help me in the past, and over the years I've grown in that area. I've slowly let go... but this... this sickness is needy. It's all consuming. It forces me to be dependent on God. It forces me to ask for help from those in my family and circle of close friends. It forces me to change.
Here is a text sent to my friend that spoke to MY heart. I love how only God can do this! It's so absolutely amazing!
"The devil only messes with us if we are a threat. So press in (insert name here)and prepare to go through heck to become something even more glorious! And it may not bring comfort now but it has so ministered to my heart to know there are others out there. That it's not just online on blogs and news articles but someone I trust and love and respect is enduring a part of this too. You are helping me, (insert name here). Thank you. Even though you don't see it you are speaking straight to my heart. Abba is whispering to that darkness in my heart and it is fleeing because He is near! It's a bolt when He speaks. The low whisper that shakes the earth!"
I am so grateful for TRUTH today. I am so thankful that He uses all of His children to minister to one another. I am so grateful that the world, for today, is a little less dark, and a lot more light!
:)
That's a startling question. Life is life. It's busy, distracting. I read my Bible everyday, I pray... but how many times am I halfheartedly involved? How much of the time is spent inviting the Holy Spirit in completely and trusting that He will show up?
Because we have a continual knowledge that He is with us. We pray, we know He is in control, but we still try to take over. We still try to do what we can to make Him be God. Whew. that's great stuff right there!
It's been BRUTAL lately. I'm talking tantrums, yucky behavior, sobbing, etc. and only today do I realize that I am NOT broken, I am being broken in. Wow.
Savor that with me.
I AM NOT BROKEN, I AM BEING BROKEN IN.
I feel guilty everyday for not being the old me. I feel bad for needing help. That's been a huge stronghold. Not allowing others to help me in the past, and over the years I've grown in that area. I've slowly let go... but this... this sickness is needy. It's all consuming. It forces me to be dependent on God. It forces me to ask for help from those in my family and circle of close friends. It forces me to change.
Here is a text sent to my friend that spoke to MY heart. I love how only God can do this! It's so absolutely amazing!
"The devil only messes with us if we are a threat. So press in (insert name here)and prepare to go through heck to become something even more glorious! And it may not bring comfort now but it has so ministered to my heart to know there are others out there. That it's not just online on blogs and news articles but someone I trust and love and respect is enduring a part of this too. You are helping me, (insert name here). Thank you. Even though you don't see it you are speaking straight to my heart. Abba is whispering to that darkness in my heart and it is fleeing because He is near! It's a bolt when He speaks. The low whisper that shakes the earth!"
I am so grateful for TRUTH today. I am so thankful that He uses all of His children to minister to one another. I am so grateful that the world, for today, is a little less dark, and a lot more light!
:)
Dreams
This is what the LORD says:
"Stand at the crossroads and look;
ask for the ancient paths,
ask where the good way is, and walk in it,
and you will find rest for your souls.
But you said, 'We will not walk in it."
Jeremiah 6:16
Spouting off before listening to the facts is both shameful and foolish.
Proverbs 18:13
The tongue has the power of life and death,
and those who love it will eat its fruit.
Proverbs 18:21
*************************************************************************************
Last night I couldn't sleep again. My arms and hands have started to get numb and fall asleep, but my body will not relax. I sleep in 2 or 3 hour increments, which in turn make the fibro fog and pain worse. It's a vicious cycle. My roommate went to the ER last night and found out they have to get their gall bladder removed. Please pray for that- healing and an ease of pain. So because they are unwell they are home today, and I have a moment that is kid free and decided to update my blog now.
I failed to mention that a HUGE part of fibro is that I cannot remember a lot of information. One night I forgot what the name of the Holocaust was. I forget what we spoke about 5 minutes ago. I can be telling a story, and I forget what I am saying mid-sentence. It's completely infuriating! Sometimes I just don't say anything anymore because the likelihood that I can finish the tale is slim.
Quick side bar: my dear friend just texted me that she has chronic fatigue syndrome. I wish she didn't have it (it's basically fibro but without the pain portion, but the exhaustion alone will be horrendous)but I must confess it feels good to not feel like I am the only one in my sphere of friends and family going through this. I declare healing over her in the name of Jesus! I can totally see how she would have it. 1.It runs in her family (same as me) and 2. she is such a type A (like me!) and always says yes and is on the go. Poor love.
Where was I? Oh yes- so I cannot remember names, events, conversations. When I say that there is sensory overload, I mean OVERLOAD. The sounds of a dryer, people whispering, bags crinkling, etc. all feel like they are right in my brain. It's in surround sound. The sounds and light outside create a response that is much like panic. I cannot slow it down. I feel a twitch in my chest, a shortness in attitude, and I snap. It's like all of my senses are short circuiting and I am spazzing out.
Anyway, I wanted to write about my dream during my 3 hours of sleep last night. I already forgot most of it, but there was an airport. It was strange. It started as a park. There were benches, and I was sitting with my parents. I grabbed my purse, and we went to the airport. I felt pressure during the entire dream. The "airport" had sections. The park area was one, and than we went into what seemed like a Mega church. I saw Jeremy, Josh Dobson, and Ferial. At this point I realized I had someone else's purse. Someone had stolen mine and I needed MY purse, with MY ID to get on the plane. Mylie and Aaron were ahead of me. He was carrying her. It was all very fast and I felt like I was getting left behind. There was a certain aura of importance about the whole purse/ID business. Perhaps because in real life I feel like I have no idea who I am anymore? It's a possibility.
That's all for now. Wisdom teeth extraction update: I still have two holes. I wonder how long it will take for them to close.
"Stand at the crossroads and look;
ask for the ancient paths,
ask where the good way is, and walk in it,
and you will find rest for your souls.
But you said, 'We will not walk in it."
Jeremiah 6:16
Spouting off before listening to the facts is both shameful and foolish.
Proverbs 18:13
The tongue has the power of life and death,
and those who love it will eat its fruit.
Proverbs 18:21
*************************************************************************************
Last night I couldn't sleep again. My arms and hands have started to get numb and fall asleep, but my body will not relax. I sleep in 2 or 3 hour increments, which in turn make the fibro fog and pain worse. It's a vicious cycle. My roommate went to the ER last night and found out they have to get their gall bladder removed. Please pray for that- healing and an ease of pain. So because they are unwell they are home today, and I have a moment that is kid free and decided to update my blog now.
I failed to mention that a HUGE part of fibro is that I cannot remember a lot of information. One night I forgot what the name of the Holocaust was. I forget what we spoke about 5 minutes ago. I can be telling a story, and I forget what I am saying mid-sentence. It's completely infuriating! Sometimes I just don't say anything anymore because the likelihood that I can finish the tale is slim.
Quick side bar: my dear friend just texted me that she has chronic fatigue syndrome. I wish she didn't have it (it's basically fibro but without the pain portion, but the exhaustion alone will be horrendous)but I must confess it feels good to not feel like I am the only one in my sphere of friends and family going through this. I declare healing over her in the name of Jesus! I can totally see how she would have it. 1.It runs in her family (same as me) and 2. she is such a type A (like me!) and always says yes and is on the go. Poor love.
Where was I? Oh yes- so I cannot remember names, events, conversations. When I say that there is sensory overload, I mean OVERLOAD. The sounds of a dryer, people whispering, bags crinkling, etc. all feel like they are right in my brain. It's in surround sound. The sounds and light outside create a response that is much like panic. I cannot slow it down. I feel a twitch in my chest, a shortness in attitude, and I snap. It's like all of my senses are short circuiting and I am spazzing out.
Anyway, I wanted to write about my dream during my 3 hours of sleep last night. I already forgot most of it, but there was an airport. It was strange. It started as a park. There were benches, and I was sitting with my parents. I grabbed my purse, and we went to the airport. I felt pressure during the entire dream. The "airport" had sections. The park area was one, and than we went into what seemed like a Mega church. I saw Jeremy, Josh Dobson, and Ferial. At this point I realized I had someone else's purse. Someone had stolen mine and I needed MY purse, with MY ID to get on the plane. Mylie and Aaron were ahead of me. He was carrying her. It was all very fast and I felt like I was getting left behind. There was a certain aura of importance about the whole purse/ID business. Perhaps because in real life I feel like I have no idea who I am anymore? It's a possibility.
That's all for now. Wisdom teeth extraction update: I still have two holes. I wonder how long it will take for them to close.
Sunday, October 17, 2010
Sunday
I have not slept yet. Insomnia comes with the terrain.
Currently:
all over pain
nausea
numbness in hands and feet
fatigue
insomnia
Currently:
all over pain
nausea
numbness in hands and feet
fatigue
insomnia
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