An Angel Disguised as a Nurse

I met an angel disguised as a nurse today.  My daughter has been very sick for several years with Fibromyalgia.  She has had to drop out of school twice because she has been so sick.  There is one juvenile specialist in my state.  She has a waiting list that ranges from months to years.  Last year when my daughter had to drop out of school for a second time, I called but didn't have the right kind of insurance.  I asked if I could pay it myself and was told it would cost $1,000 a visit.  I was devastated.  There was no way I could pay that, even with the extra jobs I work. 
     She dropped out of school and I prayed that she could make it until the fall when I could switch insurance.  I called in September and was put on a waiting list. 
     Mandy has been very sick the past few weeks and was worried that she would have to drop out of school for a third time.  I called again yesterday and the nurse told me that she would see what she could do. 
     Last night Mandy got up in the middle of the night and passed out cold on the bathroom floor.  After getting her to bed, I stayed up all night to make sure she wouldn't get up and fall again. 
     Today, during class, my phone rang in my classroom.  It is not supposed to ring through during class.  Somehow, the nurse managed to get through to tell me that someone had cancelled an appointment two weeks from now, and if I could get the paperwork, she would save the spot for me.  I couldn't thank the woman enough.  She was an amazing angel in my life. 

Change Your Thinking

“If you can’t change your fate, change your attitude.” – Ralph Waldo Emerson  

     When I was diagnosed with Fibromyalgia, the rheumatologist came in and said, "I have good news and bad news.  The good news is it won't kill you and the bad news is it will never go away and there is nothing I can do for you."  I was on a leave of absence from work, barely able to move, and feeling sorry for myself.  One night I realized that he was right.  There was nothing I could do to make it go away and all this energy feeling sorry for myself was making my body feel worse.  I started to think about the positive side - it wouldn't kill me.  Well, that's not such a bad diagnosis when you think about it like that.  There are plenty of worse things I could have.  Once I started thinking about that little glimmer of positive energy, I began to feel a little better.   

     It's okay to rage and cry and mourn the loss.  But when it's over, focusing on the "can'ts" doesn't change them, it only makes me feel miserable. Positive thinking won't make me better, but it makes me feel better.  Accepting the "can'ts" doesn't mean I like it or it's okay, it just lets me focus on all the "cans" in my life.  It's all good because life works out the way it's supposed to be.  None of us gets out alive, so we may as well enjoy the journey.

The Crash

     Wow - this is a hard thing for me to actually do, even though I know better.  I know if I overdo it today, I will crash for the next few days, but I "forget."  I get sick of being sick.  I hate turning down fun activities because something that is "no big deal" for everyone else took all my energy for the next few days.  It's embarrassing and frustrating and discouraging.
     On the days when I feel good, I am thrilled to feel even a smidgen of the way I used to feel.  I know it won't last, so I try to do everything I can in the few hours I have.  I know I will crash later, but in the moment, I don't care.  I want my life back.  I want to dance and garden and play and shop and visit with people.  I will deal with the crash later.
     Of course, the crash is horrible!  Pain everywhere - even elbows.  Muscles that refuse to move, even when that means crawling up the stairs or not being able to shampoo your hair.  
     My daughter is going to go back to school this fall.  I've been talking to her about ways to pace herself so she doesn't crash as often.  Obviously I need to take my own advice.  Anyone have any great suggestions for us to avoid the crash?  

Stages of Grief

     I knew you went through the stages of grief when someone died, but I never realized that you go through the same stages when you have a chronic illness like Fibromyalgia or Chronic Fatigue Syndrome.
     The first stage is denial.  I dove into this stage.  To prove I wasn't sick, I did twice as much work as I had been doing.  I had major flare-ups during this stage because I refused to accept what my body was telling me.  This led easily into the second step - anger.
     When I realized I couldn't just ignore it, I got angry.  I blamed my doctors for not being smart enough or caring enough to help me.  If my doctor told me one more time I would be cured if I would just exercise and lose weight, I would curse him with this disease.  I blamed my family and friends for not understanding what I was going through when they said things like, "I get tired, too."  I got angry at God for making me sick.  Mostly I raged at myself for not being able to fix it.  For the first time in my life I couldn't will myself to overcome an obstacle, and I felt like a failure.
     When anger didn't work, I began bargaining with God.  When that didn't work I bargained with my family and friends.  What if I stay home and rest tomorrow, then can I go to the party Friday?  When they didn't have the power to fix it, I turned to bargaining with myself.  The problem was I never kept my part of the bargains.  I would end up back in denial, pushing myself too hard, and then angry when it didn't work.
     After spiraling through the first three stages several times, I got depressed.  Why should I even go on living if I was going to live with excruciating pain, unable to dress myself or hold my baby?  I spent a lot of time in this stage and those dark days were a pain all its own.  My doctor thought I was in pain because I was depressed.  I knew I was depressed because of the physical and emotional pain of the Fibromyalgia and CFS.  I wish I could tell you how I made it through those days, but they are a blur of blackness when I try to remember them now.
     The last step is acceptance.  I reached this stage by starting this blog and reaching out to others in pain.  I read everything I could on the subject and began taking better care of myself.  I stopped thinking of Fibromyalgia as the main part of my identity and began seeing me as Tiff again, with a new aspect to my life.
     I wish I could say that once you reach acceptance you are done, but that's not the case.  I still spiral through the stages every time something new comes up in my life.  Monday is a memorial hike for someone I loved.  I really wanted to go and immediately went into denial that there were any reasons I couldn't go.  Then I began bargaining.  What if I am careful?  What if I promise not to overdo it?  What if...
When I found out it would be an all-day eight mile hike up a rough terrain, I knew there was no way I could go.  I was so angry at myself for not being able to do something that was so easy for everyone else.  Then I got depressed that I wouldn't be able to honor his memory in such a spiritual way.  I'm still in this stage today, but I hope to move into acceptance soon.  My daughter and I plan to choose a flower that represents him and plant it in our garden so I will have a special place to go instead of the hike.
     After dealing with Fibromyalgia and Chronic Fatigue for the past ten years, the steps are just as painful, but they are easier to go through and I go through them more quickly than I did originally.  I hope you are able to find acceptance in your life, but I'm here for you while you go through the other stages.

Fibro and Fatigue Center

     Seven years ago, my life caved in on me.  Little things like taking a shower and getting dressed left me crying with exhaustion.  Every part of my body ached.  Unable to quit working, I stopped doing everything else, even the things I loved.  I bounced from doctor to doctor with no luck.  In the meantime, my life became very small.  I stopped reading because the words didn't make sense.  Even watching TV took more attention than I had.  I crawled home from work, curled up in a ball with the covers over my head and slept.  I even slept through birthday parties and family gatherings.
     One day I heard about a new clinic for pain and fatigue, and made an appointment to hear their advertising claims.  My insurance declared it "experimental" and denied payments, but for some strange reason, I handed over my credit card for the first few hundred dollars.  I couldn't afford it and worried I was being scammed, but something told me to do it.  That moment made all the difference.  Through their experimental care, I finally got some semblance of my life back.  Their  link is http://www.fibroandfatigue.com/ 

My Brain is Asleep

     Sleep is a huge issue when you have Fibromyalgia or Chronic Fatigue Syndrome.  Not only is it hard to fall asleep, your brain never goes into Level 4 sleep - Deep Sleep.  This is the stage where your body heals itself from the minor traumas of the day both physically and mentally. Muscles grow and your body stays healthy by renewing itself.  It's what lets you wake up refreshed from a good night's sleep.  When you have Fibro and/or CFS, your brain dreams, but instead of moving into a deeper level of sleep, it resurfaces to a light sleep and you wake up.  Now repeat the process several times a night, day after day and you will understand why sleep is a huge issue for us.  It is so huge, it is one of the symptoms used to diagnose the diseases.  Many researchers believe suffering from sleep deprivation for so long even causes the diseases. 
     There is new research conducted on rats that found sleep deprivation caused parts of the rats' brains to act like they were asleep.  I feel like this every day with Brain Fog.  I say the wrong words, but don't know what I said.  I call people the wrong names, even though I know who they are.  If you ask me directions, I will not be able to tell you which way to turn because I can't figure out right and left.  I will look at you blankly while you are talking to me because I can't figure out what you are saying to me.  I hear the words, but my brain can't connect them with any meaning.  Don't bother asking me my phone number or address. The numbers will get jumbled in my head and I will inevitably give you the wrong ones in the wrong order. Forget calling me on the phone.  Without any visual cues, the Brain Fog gets overwhelming and panic attacks begin to set in.  It's enough to make me feel crazy and definitely enough for everyone else to think I am stupid.  I don't know if it's better to say, "Sorry, that part of my brain is currently asleep; try back later," or just attribute it to Brain Fog.  I do know that the analogy of having parts of my brain fall asleep makes sense to me and makes the Brain Fog seem less scary and overwhelming.  After all, my brain may be asleep for a few minutes or hours, but I always wake up again.  It isn't permanent.  What do you think?            

Hard Lesson

     Okay, so those of you that know me in real life know I am very stubborn and I don't like to be told what to do.  I learned the hard way this week that those characteristics don't serve me very well.  I read a chiropractor's theory Fibromyalgia is caused by problems in the neck and spine that limit the blood flow and disrupt the nerve endings.  This is why they struggle with balance, walking, and falling.
     To help assess his patients, he has them put their heads back and look towards the ceiling for 30 seconds.  After doing that, most of his patients have severe trouble.  They get severe headaches, pain, and flare ups. 
      Because of some physical trauma I suffered as a child, the vertebrates in my neck are backward.  After reading this article, I said to myself, "I don't think that's right.  I know my neck is messed up and I can look up for 30 seconds."  Then I looked up at the ceiling and counted to thirty.  It was hard for me, but I did it.  (If you don't have Fibro, the fact that it's hard to look up for 30 seconds sounds ridiculous, doesn't it?) 
     For the rest of the day I had pain in my neck that continued to get worse.  Then the migraine hit me.  I spent the last half of the day in bed.  It got so bad, I got sick.  I have never had a headache that made me get sick.  Since I got sick on my pain medicine, I spent the entire night in pain.  The pain moved to my jaw and teeth.  The next day I had pain in the back of my head, my neck, and down my legs. 
      It might have been a strange coincidence, but I think the next time a doctor says something like that, I won't try to prove him or her wrong.  I guess I get so used to fake claims and quick fixes that I have become rather jaded.
     Today I was reading some other research from the National Fibromyalgia Association and came across a name that sounded intriguing called Fibro Innovations.  After visiting the site, I realized this was the website of the doctor I read about last week, even though I hadn't been to this website before or known the name of the group the doctor was working with.
     After looking at the website and realizing this was the same doctor, I have a headache, my neck hurts and my teeth feel too big for my mouth.  Apparently my body has a long memory and doesn't like this doctor. 
     Interesting thoughts to ponder about being sick and the emotional ties attached to physical pain.   

This is the link to his site if you are interested in his theory or his treatment plan

http://www.fibroinnovations.org/index.htmlhttp://www.fibroinnovations.org/index.html

Are We Wimps?

     My doctor thinks I am a wimp.  I didn't used to bruise when the nurse took my pulse, and I didn't feel like screaming when she took my blood pressure.  It's true things that don't hurt other people make me feel excruciating pain, but I am anything but a wimp. 
     One of the major symptoms of Fibromyalgia is pain.  It is a strange pain that changes, moves, and has no connection to a cause that we can pinpoint. 
     We have a low pain threshold, so our nerves register benign sensations as pain.  Other people register the nurse taking their pulse as pressure.  My nerves register it as pain.  Other people register a sensation and are able to forget about it. When you put on your watch, you feel the sensation of weight against your skin, but you soon forget about it.  My nerves don't forget about it.  In fact, as the minutes go by, the sensation turns to pain.  The pain continues growing until I can't stand it anymore and rip it off my wrist in disgust.  Our nerves register heat, sound, light, pressure, and touch as pain.  It is a physical response our nerve endings send to our brains.  It is not an emotional response. 
     Although we have a low pain theshold and register so many things as pain, we have a high pain tolerance.  We are able to deal with pain that is unimaginable to most people.  On a good day my feet feel like they are on fire, I can barely walk, have a headache, my leg muscles are in spasms, and my eye keeps twitching.  You would never know it because I have learned to deal with the pain.  Although my body is registering everything as pain, I am able to work two jobs, raise a family, and do it all with a positve attitude and a smile.  The fact that people can look at me and say, "You don't look sick," shows what a high pain tolerance I have.     
     Maybe what my doctor meant to say is , "You're not a wimp.  Your nerve endings are a bit confused and think everything is painful.  They are the wimpy ones, not you."  That would make sense because sometimes he gets on my nerves. 

Exercise and Flare-ups

     My doctor is convinced if I lose weight and exercise, the Fibromyalgia and Chronic Fatigue will be cured.  I go between rage and hope he is right.  His comments embarrass me and make me feel like a failure.
      Eleven years ago I was fifty pounds lighter with two small children and enough energy to work full time and get my masters degree at night.  Soon after my son was born, I noticed my body wasn't recovering the way it had before.  I didn't have any energy for my baby or young daughter. Simple tasks like taking a shower or getting dressed left me crying on the floor.
     Then the pain started.  Things that were not painful before became excruciating.  Hugs from my baby made me feel like I had been tackled by a football player. The gentlest touch sent waves of pain through my body.  Even wearing clothes or having a sheet touch my skin at night was horrible.
     My doctor diagnosed me with depression.  I kept telling him I was depressed because I was sick, not sick because I was depressed.  He gave me anti-depressants and sent me home.  With the medicine, I gained thirty pounds in weeks.  I tried to exercise, but then I couldn't walk.  The steroid shots helped me walk again, but added twenty more pounds. 
     Most days, most people can't tell I am sick.  Huge amounts of medication keep me functioning, but my weight is still a big issue for my self-esteem.  I haven't had a flare up for months, so I forgot how horrible they are.  This week I convinced myself to start jogging.  I jogged four times and lost two pounds.  I also brought on the worst flare-up I have had in years.  My friend says, "If exercise cures your chronic fatigue, you never really had it in the first place."
     It is a hard balance to find.  Do I listen to people who have these illnesses, too, and know what I am talking about? Do I listen to doctors who think it is all in my head?  Do I exercise to get healthy and spend the rest of the day in bed or do I save my energy for the rest of my life?  I'm still trying to find that balance in my life.  Funny that finding balance is my resolution this year.  Luckily it's only January.