Sunday, August 28, 2011

Why Do Our Pain Meds Not Control Pain from Things Like Carpel Tunnel?

Pain amazes me.  I take some pretty potent pain medication for my fibro.  When I had my kidney stone problems last year, the ER doc and my urologist told me that what they usually prescribe for kidney stone pain didn’t come anywhere near to what I was already taking.  The pain was absolutely horrendous.  My kidney stone pain was a Level 10 while I was taking my extended release and breakthrough pain medication.  It frightens me to think about how painful it would have been without my pain medication.  Before my fibro got so bad, I was a pain whimp.  Mr. Supportive had to take me to the dentist for my root canal because I had to be drugged up on Valium so I "passed out" in the chair before the work started,  

I still have a fear of needles and the pain that comes with them.  When my son and daughter's father and I got married, we were required to take a blood test.  I seriously sat and looked at him and then the needle several times, deciding if he was worth getting stuck.  LOL  My two wonderful children were definitely worth that needle stick!  I was so relieved when I discovered that the blood test was not required when I married Mr. Supportive.  

I filed my first and only Workers Compensation claim for carpel tunnel.  After wearing the wrist brace 24/7 for several months, it wasn't much better so I bit the bullet and got a shot of cortisone.  It cleared up and my claim was closed. (So now it’s my money paying for treatment.)  Fast forward four years and it’s back with a vengeance.  My pain medications are managing my fibro pain and the everyday pain of the carpel tunnel.  At least it manages it until I turn my wrist a certain way and the pain spikes up to a Level 8 or 9.  I actually scream out when I have to turn it that way.  How can the pain override all the pain medication I have in my system?  You’d think that the pain medication would laugh at the carpel tunnel for thinking it could get past them and bother me.  I’m here to tell you that it’s the carpel tunnel laughing.

Since it’s my right hand and I’m right handed, there are many things that I must use it for.  The task that hurts the most is done in a small room behind a closed door.  It hurts so bad that I put off going to that room for as long as I can.  When I finally can’t put it off any longer, Mr. Supportive knows exactly where I am and what I’m doing by the muffled scream.  Why can’t I either be ambidextrous or have the carpel tunnel in my left hand?

I’ve been wearing my brace for several weeks now and it helps – until I have to turn it that special way.  Last night I took off my brace to wash up the last of the dishes right before bed.  I forgot to put it back on and it’s no telling how it was bent during the night.  This morning, I can’t open the jar of peanut butter without screaming.  

I had sworn off going to anymore doctors except for the Social Security Disability doctors and my pain management doctor.  I’m just really tired of going to the doctor and them finding more and more wrong with me.  Or I’m paying them to tell me what I already know. It looks like I’m going to have to add an exception and include my hand doctor.  I’ve been trying to fight this pain too long on my own.  I feel sure that Dr. Cole will be bringing out the big scary needle and sticking it in my wrist.  Hopefully, that shot will take care of it for another four years.

Since this blog is about my fibro pain, I guess I should mention it.  I’ve had a horrible problem with Chronic Fatigue  lately.  It’s nothing for me to sleep 12- 15 hours at a time.  People often ask if that doesn’t give me a back ache.  Up until recently, it never has but that’s not the case anymore.  My back pain is a Level 6 and my fatigue is still pretty high.

Although I have things to do, I’m headed for a nap.  Pain is something that as long as it stays at a Level 5 or below I can function pretty well.  If it was just the pain, I could probably stay up and accomplish what I need to do. I just can’t learn to work through the fatigue.  Do any of you have any suggestions for getting through the fatigue?  I’d love to hear from you.

Saturday, August 20, 2011

It's Just the Way Fibro Is

I was shocked when I saw that it had been ten days since I wrote the last post!  I’m not sure why I was shocked because the last ten days have been the usual fibromyalgia ups and downs.  My pain has been higher than normal at a Level 8  instead of my usual Level 4 or 5.  I’ve been trying to pinpoint something that I did that may have started this flare so that I can avoid that in the future.  In true fibro fashion, there is nothing that I can think of that caused it.  It’s just the way fibro is.

I have got so much that I need to be getting done and just don’t have the energy for it.  I’ve said lately that being chronically ill is like having a job.  I just got a certified letter from my Long Term Disability carrier saying that my benefits are only approved till October 28.  While they admit that I cannot go back to my job as a paralegal, they are reviewing my file to see if there is any other job that I can hold.  It apparently doesn’t matter if the job is nothing remotely like what I’ve done before or doesn’t even pay what my benefit it. If that wasn’t enough to make me nervous, my doctors haven’t sent them the requested records.  So Monday morning, I’ll be on the phone begging the docs to send my records in. When the adjustor told me how my former employer had the policy set up, I felt like once again the company was pulling the rug out from under my feet.  One of these days, I’m going to write about my last year at work.  I will always feel that my supervisor had decided that I didn’t “fit” with the rest of the department and used my illness to get rid of me.  Since I have my appointment with the Social Security Disability doctors August 30, I hope I’ll have my SSD approved before they try to pull my LTD benefit check.  Without either my LTD benefit or a SSD check, we will lose our house. My illness has already forced us into the Home Affordability Program.  If you miss a payment when you are in the program, they start foreclosure.  I see no way around that.  Where we will go or what we will do is something that I refuse to think about.  I prefer to pray for God’s direction and His blessings that if my LTD benefit stops, my SSD will start.  All of this emotional and financial strain is just the way fibro is.

Financial problems are nothing new to those of us who are disabled by our Fibromyalgia.  Each day, some of us have to decide if they will have their pain pills refilled or buy groceries.  Some of us who are still working way beyond the time that they should have stopped, has to decide if they can go on for another day, week or month.  Some of us have our bodies make that decision for us when we literally can no longer put one foot in front of the other.  I don't understand how Social Security Disability can justify not having a category for Fibromyalgia.  They have to see how many people are effected by it based on the applications that they receive.  We've worked and paid in to the Social Security system. Why do they make it so difficult for us to get the financial help we are due.  Most of us live a two paycheck life.  When one of us looses that paycheck, it sends our whole world into a tailspin.  Facing the financial unknown causes so much stress that our pain skyrockets.  How do you make responsible decisions that need to be made right now when your pain is off the charts? It’s just the way fibro is.

Mr. Supportive and I have tried to explain fibromyalgia to an older family member many times.  This person believes that I am in pain.  At the same time, they don’t understand that the pain is always there, sometimes better, sometimes worse.  Whenever we talk and I say that I’m more tired than usual or the pain is a little worse, they want to know why.  They ask if I went to bed on time, what I did do make it hurt more.  For several years, I tried explaining it each time.  I no longer have the energy for that.  Now I say “It’s just the way fibro is.”

Wednesday, August 10, 2011

My Social Security Disability Hearing and Why I Write this Blog

I'm really not sure what I was expecting when I went to my Social Security Disability hearing.  What ever I was expecting, it was totally different.  :-)  I had worried so much about parking and getting to the building.  About having to stand in front of the building and wait for Mr. Supportive to come back from parking the car.  That was a lot of wasted worrying.  The Memphis SSD office is in a one floor building with parking right by the door.  We arrived at the same time as my attorney and she secured a conference room for us to go over how the hearing would proceed. Rachel Cohen is a great attorney but more importantly, she's a wonderful human being who did her best to calm my fears.  

Instead of this
Unfortunately, Mr. Wonderful was not allowed in the hearing room. Him being there would have made it a lot easier.  Being a paralegal, my point of reference for a hearing room was a court room.  The idea of being "on display" in a big room had really bothered me.  I was glad to discover that a hearing room was nothing more than a small conference room with a table where the court reporter, my attorney and I sat.  The administrative law judge did have a semi- traditional "bench" at the end of the table and I think he was wearing judicial robes. 
It was more like this.

I was able to hold myself together for the first part of the questioning.  Things like my name and what positions I had held in my employment life.  Those questions have clear, factual answers.  It was when I was asked to describe how I became ill.  How it affected my ability to work.  How it affects my ability to function at home.  Those answers are also clear and factual.  At the same time, they are subjective, emotional and based on my inner experience as they happened.

As I told about going to school to be a paralegal and how that was a dream come true, I was calm.  The calmness began to go away when I started telling how my world had changed.  How I could not remember how to use the skills I had worked so hard to learn.  As I told the administrative law judge about the times I was taught a new task in my new job, only to not only not remember how to do it, I didn't remember being taught, the emotion began to overwhelm me.  As I told him of the physical pain and fatigue that cause me to not be able to go to work, the tears began to fall.  Several times, I had to stop and compose  myself.  It was probably the most emotionally painful time of my life.  The hardest question of the day was the last one.  Why did my illness keep me from working full time.

That's when the tear ducts opened wide as I tried to tell the administrative law judge how I had always been the "go to person" in the office.  How I had always been the one at work early and staying late.  How I had always been on top of my game, admired by everyone and receiving nothing but the highest reviews. How almost exactly a year before I had to stop working, I was recognized at my graduation ceremony as graduating with the highest honors - a 4.0 gpa. I worked full time and went to school full time and did both well.  Then without warning, I started becoming a person that I didn't know.  A person who was so fatigued that walking in from the parking lot caused me to have to sit down as soon as I got into the building.  Many times, I didn't think I'd make it into the building and thought about sitting down on the curb to rest.  I became a person who was in so much pain that no matter what I did or what I took, it wouldn't go away.  The pain grew to be so bad that I would throw up trying to get ready for work.  I became the most undependable and useless person I had ever seen.  I didn't understand it and I didn't want that to be my life.  By this point, I was pretty much inconsolable.  All I wanted was to get out of that room and into Mr. Supportive's arms.  

The administrative law judge had been reading the statements from family and friends and the printouts from this blog as he listened to my testimony.  Before we finished up, he asked me how long it took to write a post.  I told him it depended on the day.  On a good day, I could do it in a hour or so.  On a bad day, it could take several hours up to several days.  Then he asked me why.  Why did I write?  I don't think I really knew until he asked me that question. 

In the beginning, it had been to chronicle my pain so that he could read it when that day came.  It was at that moment that I realized that it was much more than that.  I realized that it was also for all of you who might read it.  That somehow it would help you not to feel alone.  It's for your family and friends who don't know what to make of this disease that has completely changed you. We suffer from a hidden illness, an illness that is considered by some, including those in the medical profession, to be nothing but laziness or "in our head".  I'm here to tell you that it is real.  It's only "in our heads" in the memory loss that it causes and the false nerve firings that magnify pain in our body.  It is a real illness that needs a real cure.  Too many people have suffered for too long, physically from Fibromyalgia and mentally at the hands of their family, friends and doctors who don't believe it exists.  

I sometimes feel that the "world" is run by Google searches.  It's time for all of us to use the power of the internet and be as active as we can and get the truth out. We deserve to be heard!  Since most of us become very limited in what we can do, write a blog, comment on blog posts, talk to everyone you can.  Write your state legislators, your Congressman. Become active reading the information that the various Fibromyalgia organizations publish.  Let the world know that we are legitimately ill and we deserve to be treated as such.

I have come to believe that God has a plan for me. A plan to use my illness and suffering to encourage others who suffer like I do.  I'm not sure how it's suppose to work because there are so many days when I can't function.  In addition to Fibromyalgia, I have Chronic Myofasical Pain, Chronic Fatigue, Peripheral Neuropathy,  Lymphedema, Carpal Tunnel Syndrome and 2 herniated discs in my neck and 2 in my back. I trust that He will show me and I pray that I can help those of you who read this in some small way.