I sit here reading the posts of my friends and wonder what is going to happen to me.  My husband and I are going to lose our home.  I look around at the things we have done and the funwe have had making changes to the house.  When I was well I would change the paint color every six months or so.  My basement looks like Sherwin Williams.  Now I have had the same paint color for 2 years because I cannot paint anymore.  I wonder how long will I get to stay here.  Where am I going when I leave?  What will happen to my stuff?  My co-pays of doctor appontments and medicines costs 1/2 of my husbands take home pay this week.  After the fire on Father's Day burned the business to the ground he doesn't get any overtime.  He cannot even use my FLMA because we cannot afford for him to lose a days work.  I have to go to the dentists in 2 weeks and he is going to try and work on my tooth without numbing me.  I had an adverse reaction to the numbing last time and they won't do it anymore,  I also had bells palsy last time and he said it may happen again.  The only alternative is to put me under general anesthesia.  We keep trying and getting no where.  In fact we are slipping back.   Last month dad paid the house payment for 2 months as a surprise and it was 9.12 short.  Instead of calling us they just didn't post the payment.  This made the second payment look like it was late.  I mailed them the check and they are supposed to post the payment without late charges.  ( they would have been 39.00.  No one cares anymore.  It is like everything is an answering machine.  There is nothing personal.  Not even healthcare is personal anymore.  They will let you do without before they give you something extra.  It is a business.  Life is a business and if you don't have the money or strength to keep it going, then it closes and no one cares.    

  

Last week my oldest daughter took me to social services to apply for help.  She took me because I have no self confidence anymore.  I was fortunate and received a social worker with a mother in law that had fibromyalgia.  She understood my pain.  During the interview, Laura had to answer many of the questions, I was just too tired and my mouth hurt to talk.  Scott and I were on the fence for receiving help, but she did say she would try and I know she did because my children received medical cards a week later.  It was the first postive piece of mail I had received since this nightmare began.

It's funny, how you think that social services is a place you will never go. Food stamps are something you will never need and hard work will always pay the bills.  My husband works hard.  I worked hard, until my accident.  Then the kids are home from school and your husband is on his way home from work and you go to the kitchen and there is nothing there for dinner.  You are the mom, you are supposed to fix it.  Mom's fix everything.  So, you go to social services and apply for food stamps.  It only takes on weekend of hunger to encourage you to fill out the paperwork.  Now I run to the mailbox every day, not to see if I got a card from my sister or a letter about my disability.  No, I am looking for my food stamps so I can go to the market.  Am I ashamed.  No way.  I will proudly hand them over.  Those who look down on me had better understand that I was only a few paychecks between living the high life and food stamps and I made a significant amount of money. 

I say to you, 'I am looking for my life."  It is gone.  There is no me anymore.  There is this new person struggling to survive.  Struggling to take care of her family.  She is in pain.  She is hurting.  I don't want her to be me and I don't want to be her.  I want to be me.  Did anybody see me?

I wake up in the morning and I see the sun, but my world is dark.  It only takes a second for me to remember everything that the night allowed me a few minutes of peace about.  I couldn't sleep.  I was up from 4-6.  Finally got up at  7:30 and went downstairs.  I have no peace about anything.  I want my husband with me every minute, like I can't function without him.  I have never been like this before.  I have always been independent and strongwilled.  I used to put my three kids in the car and drive to Georgia (12 hours) for the weekend to see my sister.  Now, I don't like to go to the mall by myself.  I don't even sit on my own porch.  I am so sad.  I want to do better and be happy, but I can't.   I just go through the paces, doing what is expected with no inner feeling at all, but all the while I am smiling on the outside.  Everything is getting on my nerves.  I don't want to talk to anyone, listen to the radio, watch TV.  I cannot stand noise of any kind.  What is there to do?    

Well the rash I thought might be a reaction to lyrica turned out to be shingles.  The blisters came out yesterday.  Of course, they are on my face, why not?  I wondered why my face hurtso bad this week.  I am used to pain but this was different.  It ran my nerve line up the side of my right face and I nearly lost my mind.  Percocet did nothing.  I am laying low today.  Taking my meds.  I cannot even lay on that side.  My grandson was just here and I cannot even touch him.  I am very sad and I hurt right now.  Life is not very good at the moment.        

Lat week I received the unfavorable decision on my disability.  At first, I didn't know what to do.  I sat and shook as I read through the lies, and misrepresented facts the Judge andhis staff stated so bluntly about me and my life.  I have TMJ and trigeminal neuralgia and occipital neuralgia on the right side of my head so chewing and talking is difficult and I often drool.  Well, according to the Judge, that is not possible because I am fat.  Oh, how did they put it, well nourished.  I guess there are alot of overly well nourished people in the US aren't there.  Oh, and I have gained weight.  Well, lets see---I have had multiple steroid injections and PO steroids, I take lyrica (who knows why this drug causes weight gain) and I just got over a broken ankle in two places on my left foot and a third degree burn on my right foot, I cannot bend over without feeling like throwing up, I cannot look above my head without feeling faint, and I have fibromyalgia HMMMMMM------I guess that sums up my ability for an exercise program.  All of this before we discuss my depression.  Now why would I be depressed.  I have turned into a big, fat, non-moving, hurting, withdrawn, well-nourished person that can still clean offices at night if I can stay awake, find someone to drive me, and all of the cleaning is waist high and I don't have to push of pull, or bend over or look up.  Or I can run a folding machine--if I don't take my medicine since I cannot run machinery on lyrica, carbarol, flexeril and hydrocodone.  These are the jobs I am so highly qualified for.  I do not feel I am above them, I just cannot do them.  My mother has been here all week cleaning for me.  My daughter sits and types what I tell her to.  She gives me 1/2 hour a night.  I am not typing very well these days.  I was also penalized for feeding my cats and taking a bath.  I didn't tell them how I have to crawl out of the bathtub and how many times I have fallen.  I also cannot wash my own hair or fix it most days.  I am the queen of the messy bun.  Anyway, my typist is going to bed.  She has school tomorrow.  Until later----

I have been having such a hard time.  I can't hardly walk.  My legs hurt.  My left leg is the worst.  It hurts at the ankle, calf, knee and hip.  I cried yesterday when I got out of the chair and started up the steps.  I worried that I might have a blood clot, but I don't have any of the classic signs.  It is just pain.  And I have this feeling like there is needles in my feet.  Sort of like when your foot goes to sleep and then wakes up.  It woke me up at 4:00 this morning and I came down and watched TV.  I have been taking more pain medicine than ever and it is still not working.  I tried going for a short walk and that didn't help either.  The only peace I have is to take a pain pill and get in bed with the electric blanket on.  The weekends are so hard.  Claire had a softball game and it is her senior  year and she is starting firstbaseman so I am making every effort to be there.  I go early so I can sit in my car, so it is not too bad.  Then Spencer is in a basketball tournament and he had a game too.  He has a game tomorrow to and if they win they play Monday.  No one realizes how hard it is.  My husband is tired of eating out, but I am too tired to cook and I can't go to the market by myself and he has not had the time to take me.  Oh, I know I am whinning , but I am tired of this.  I am only a small fragment of my former self and I can feel that slipping away.  My dreams are gone.  Most of the time I don't even know who I am anymore.   

I can't sleep.  I hurt all over.  I amm afraid to take any pain medicine in case my brother needs me.  My brother is a wonderful man who is also an alcoholic.  He was in BettyFord earlier this year, but that did not go as well as we had planned.   He live is California and is a very successful real estates salesman.  He decided to come to where I live because it is a small town and he thought it would be a good place for him to recover.  He has done well here at times, but last night he got so drunk that my husband had to get out of bed and help him up the stairs to go to bed.  Now he has screamed in his sleep all night.  I don't know what to dot with him.  He walked to the liquor store when I was having the dogs nails cliped.  You cannot leave him for a second. 

I have gritted my teeth all night and now my face is locked and my neck and jaws hurt like crazy.  My husband is a doll for putting up with this.  I think I am getting worse physically.  I hurt incredibly.  My arms and legs are like lead.  Even typing is an effort.  I have to lean my forearms on the table.  If this is the rest of my life, I'm not sure I want it.

    

I am tired today.  I think the trip wore me out yesterday.  My brother is visiting from California and has not been able to accept that I am sick.  He hoped that my visit to JohnHopkins would yield new and different answers than we had been given before.  Unfortunately, the answers were the same.  When I told him that he called some of his friends that were affiliated with Georgetown Hospital and told them my story.  He was given the same result.  Today is a day of acceptance for him and my parents who had also hoped for different answers.  I feel bad that I have brought this on my family.  I have always been the strong one.  The leader, the one that forged through no matter what.  Now all I want to do is go to bed.  I hurt and I am tired.  Today is a day of rest for me.  Tomorrow I will start fighting again, but for today, I must rest.

Today Scott took me to John Hopkins.  It was a scheduled visit.  My neurologist has been trying to get me in there for almost a year.  The purpose of my visit was a second opinion for my migraines.  It turned out to be a visit about fibromyalgia.  The neurologist does not feel the migraines are separate from everything else going on.  He felt they were part of the Fibro. He discussed the CNS and how he felt I had gotton on this pain cycle and couldn't get off.  He told me he felt bad for me and wished he could help me, but there was really nothing he could do.  I was on the right meds and getting the right help with my local doctors.  I did ask him if I was hypersensitised to pain how did I walk on a broken ankle for  four months and not really no it and he did not have any answer for this.  So, I asked him point blank--Do you believe in Fibro?  And he said he used to not, but now he did.  The problem is there is no real test and that makes people and physicians leary.  I told him I would let any physician that thought I was faking trade places for me for 24 hours anytime he wanted.  Unfortunately, he told me that exercise was my best option, if I could try to work though the pain of getting started.  I told him about the SSD judge yelling at me about not having any surgeries and he agreed with me that there weren't any.  My SSD hearing was 10 weeks ago tomorrow.  The stress is almost too much to take.  I am praying for a miricle for all of us.   

Finally, I am having my visit at JH today at the headache clinic.  have been waiting since August.  I hope it is not in vain.  I am beginning to think their is really no reasonto go anywhere else.  I have FM and have been dx with migraines and I will suffer forever.  There is a specialist is facial pain there in this group and that is who my original appointment was made with but when they rescheduled, they made the appointment with a doctor that can treat all neurological disorders but specialializes in alzheimers and moments disorders.  Why, they changed doctors is beyond me since I fit the first doctors specialties exactly.   It wouldn't matter except that we are driving 3 hours and my husband had to take the day off.  At least we now have FMLA to cover him so he doesn't get in trouble at work.  I wish I could be more positive.  Until later.  

Jesus is talking to Peter who didn't realize he had to die in order for God's plan.  Today I am filled with wonder and amazement that God loved me enough to send his son that I may havethe gift of eternal life.  A life with no pain and no saddness.  Where I won't have to worry about money or bills.  An atmosphere of bright lights of glory that don't bother my eyes or cause me to have a headache. That's how much God loves me and that's how much God love's you.

My husband said something very profound to me yesterday.  I was talking to him about the many people in our group and how it seems to grow every day and he said, "isn't is amazingthat so many more people are being diagnosed every day with a disease that some still try to say doesn't exist."  

In our shattered times, anguish relents,

Not mere idle words spoken in vain,

But rather from the silent eloquence

Bestowed by those rare souls who share our pain.  --Evans

 

What a beautiful verse to answer that ever present question of why?  Why do I hurt?  Why do my friends hurt?  Why am I in financial dispair?  Why do I feel like afailure as a wife and mother?  Did I do something to deserve this?  Is this part of my learning experience, Lord, because believe me I am learning.  I am trying to trust in you, and I know that you love me.  I know that you have a plan for me for you have told me.  Jeremiah 29:11  For I know the plans I have for you.  Do I have to hurt so much?

 

I went to the pain clinic today.  I cannot take the pain medicine and sleep my life away.  I  have responsiblibites and I have a family.  I want to have a life.  My fibro dx cameafter other dx. so I have lots of meds.  I don't even look like myself.  I don't feel like myself.  Sometimes I wonder who I am anymore.

The site is full of the healthcare profession being careless with the feelings and pain control of my friends.  As a nurse, it hurts me that my profession is not taking care of people Ihave become so fond of.  I may never know anything more that a screen name or a home city, but the  pain of fibro has bonded the people of this site.  I find myself in constant prayer for those I don't even know.  Or do I?  Is friendship built on sight?  Can we only be friends with those we have touched?  I guess not.      Sandi   

It was a bad day today.  I didn't even go to church.  I missed the Palm Sumday service.  I knew it was going to be hard to go to Spencer's basketball games, but I was in agonyyesterday.  I layed in bed under the electric blanket.  My whole body hurt.  Once again, I didn't make dinner.  We had lunch out, but I had planned to make dinner, I just couldn't.  I am so tired of living like this with no energy and not enjoying anything.  I sleep in the car if we go somewhere. I sleep on the couch if I am home.  I am sleeping my life away.  But if I am awake, I am in pain.  I have had a migraine on the right side of my head since Friday, and my legs are jumping all over he place.  I am about ready to give up.

       

It has been a hard weekend.  Spencer was playing basketball at the ACIT's which is a really big deal where I live and I could only go for a little while.  I used to go for the wholeday, but it was hard for me to just sit through his game.  He did really well.  He stuffed a 6'5'basketaball player from another school and it was beautiful!  My grandson went to the game and I could oly hold him a little while, then later on when he came to my house I fell asleep.  I guess I'm just a lousy grandmother.  Now I am even afraid to go to church because he (the minister) mentioned from the pulpit last Sunday that if we were to tired to be there and kept nodding off than we could just go home to bed.  I cannot help nodding off.  I take lots of meds in the morning and sometimes he is just not that exciting anyway.    

Maybe my answer will come tooday.  It will be 58 days.  Craig said his came in 60 days.  I am so worried.  I know I should believe in what I say and trust in the Lord to takecare of me, but is difficult.  I go to the orthpod today.  My whole left legs is painful.  I guess I'll see what he has to say.

                  I write later if I get an answer,

                                     

Another day with no answer.  I can't take it very much longer.  They have my life in their hands and there is nothing I can do about it.  I bought a new purse today.  Ifigured if I lose the house and have to sell the furniture at least I will have a nice purse.  Oh, well I am too tired to type anymore.  I am worried about Suzzee.  I am praying for her and her family.  There are  so many families with heartache here.  I don't know if it makes me glad that I am not the only one or sad because there are so many of us.

                                                          Too tired---no more    

Next Monday I will be sitting at John Hopkins, filling out more paperwork and telling my story one more time asking for help.  I hope I get someone to understand where I am coming from.  The last doctor I saw seemed very interested in what I had to say and was excited to help me and when I saw her the second time she had no idea who I was.  She flubbed her was through my chart.  I am a nurse, I have experience working in a doctor's office and I have pulled his a-- out of hot water when he had no idea what was going on and I knew she was lost.

Strike one:  She spent 10 minutes explaining how I could have broken my ankle in the accident by preparing my self for impact (which she demonstrated beautifully) until I told her the accident was 2 years ago.

Strike two:  When she asked if I took the flexeril q6hrs as ordered I explained to her that I only take the flexeril and the percocet after I had tried everything else for a headache (dark room, ice, heating pad) and she said " maybe they are migraines"  I about blew up.  I have been treated for migraines for two years and that is why I have the appt. at John Hopkins at the Headache Clinic this month.  ****but I didn't say anything.

Strike three:  I asked her if I could increase my lyrica and she said she thought 300mg was the maximum dose.  I knew this was wrong.  Then she picked up the drug book, looked up lyrica and said "yes that is the maximum dose for what we are giving it to you for".  This I knew was out of date information because I had just went to a drug seminar on lyrica and the standard dose was 450mg to 600mg.

Strike four:  She only had part of my labs there and did not review any of them and did not know how much vitamin B12 I was getting or how my dose was being adjusted because she didn't have or look for the labwork

Strike five:  She told me that I needed to return to physical therapy and the one I had been going to was closed.  I told her I had just been there in Jan. and she said no it had been closed for six months or more.  Okay, where did I go from Oct through Jan???????  And by the way, they are still open for business and operating daily at two locations.

I never corrected her.  I just smiled and said thought to myself---- 

Can you say--------New doctor!!!!!!!!!!!

The increased lyrica knocked my socks off.  I slepted most of the day and was really out of it.  I was supposed to take flexeril every 6 hours, but there was just no way I could function.  I couldn't even wake up to go to bed.  My husband woke me up at 11:30 and helped me go to bed.  I need the increase for the headache, but I don't know if I will be able to do it and function.  I felt like my head had a hat on that was like a metal vise and the pressure just kept increasing and increasing.  I have to go now, I can feel my back and neck starting to act up from sitting in this chair.

                                  

I was hoping going to the chiropractor would help, but it left me in bad shape.  I had neck spasms all night.  2 percocets and a flexeril and I still cried myself to sleep.  I can't take this much longer.  I just called my primary to see if there is anything I can do.  My daughter has a big Catholic Girls Invitational Basketall Tournament this weekend that starts today and I do not feel like I can make it.  She is a senior, so this is the last year for her.  On a more positive note, My devotions are taking a little longer because I am praying for all of my new friends on the forum.  If you would like to be included, send me a note.  I would like to pray for you.

                                                   

I have had a bad couple of days.  My brother insists that I can be healed if I go to the chiropractor---so off I go.  My face and jaw hurts so bad I can't chew.  It has been raininghere, so all of my joints hurt.  I can't stand for people to touch my skin.  My family is very supportive.  My daughter came over today to help with laundry.  I am so tired and my house is messy.  My husband brought up the Easter decorations and all I can do is look at them.  Sometimes I hate my life.  My friends are trying to help---Is there any help??????I love this forum because it let me know that I am not crazy.  I am a normal person that has real medical issues and I am going to tell them until someone listens.  Until later------Me 

I received my first packet from Fibromyalgia Network today.  I glanced through it.  There seems to be alot of helpful info.  There is a new medicine for fibro "Milnacipran" that is supposed to be approved in the fall.  There is also a flyer advertising May 12 as Fibro Awareness Day.  I just finished my devotions and remebered to pray for all of my new friends I have met through this web site.  Lonliness has been one of my greatest roadblocks.  I am so happy to have people to talk to.      

Today was bad.  I knew when I opened my eyes and had pain that I wouldn't be going to church.  My hips had hurt all night and my right ankle fracture had throbbed.  I decided to sleep in.  My son Spencer was sick, and he slept in too.  My husband went to my favorite bakery and got me a cherry turnover.  I had to eat it with a fork because I couldn't open my mouth wide enough to bite into it.  ( Will this ever end?)  Scott wanted to take me out to lunch.  I tried to get ready.  I didn't want to go, but we had a good time.  We looked at townhouses.  Our youngest child will graduate next year and we are trying to make life easier.  All I can say is that it had three floors and lots of stairs.  Anyway, the day is almost over. Claire had softball practice and then is seeing a movie with friends.  I am glad she has something to do.  I remember when life was fun.  I hope I can say that about my own life sometime.