My Story

As I prepare for my hearing next week, I decided to write down how I came to this place. 

 

 

Out of nowhere, I came down with a feeling that I had a horrible flu or some virus that wouldn't leave my body.  It really threw me for a loop.  My energy level was so very low.  I was always so active. Never sitting still.  I worked hard and was able to take care of my family.  In the very beginning I was upset because no one could not find out what was going on in my body. My friends and family did not understand what I was feeling. It pissed me off because the answers I received from the “so called” specialists was that I was tired because I had little children.  Or I was feeling stressed and depressed. Then one day my doctor called me up and told me that my blood tests revealed that I had antibodies to Mono.  But the weird thing was that none of my tests showed I had mono. He poo pooed it.  I think because he could not find any way to help me.  These symptoms persisted for years. I was sure that I had some sort of autoimmune thing going on. As my grandfather and all of his siblings had some sort of autoimmune disorder

 

Finally, some Rheumatologist told me I had Fibromylagia.  That was in 1990.  Who knew what Fibro was?  I just figured he was patronizing me.  I found myself dwelling over my symptoms, crippling my body mind and soul. I could not move on.... and the Doctors could not give me what I so badly needed; recognition that I was indeed sick and a Diagnosis. This lasted for years.  I sort out different doctors.  Then I met a doctor who took me seriously.  She took one look at me and said, “First we have to get you to sleep!”  She put me on ambien and elavil.  Within weeks I started to feel like a human being.  I started having some energy and the pain was not so bad. 

 

But within a year I was feeling like crap again.  The fatigue and pain returned with a vengeance.  But that was not all, this time I was experiencing very strange numbing and tingling sensations on the left sideof my body. Along with these episodes I would have a hard time speaking.  I felt like I was having out of body experiences.  Because I would know what was going on, but I could not communicate.  It was very scary.  I told her of my symptoms and she took another look.  This time she looked at my skin.  She pointed out a blotchy appearance on the skin of my arms and legs.  She called it “livedo reticulavis.”  Which was evidence of an autoimmune clotting disorder called antiphisiploid syndrome.  More blood tests were ordered.  This time my tests showed that I had two antibodies.  The Lupus Anticoagulant and Antiphisiploid antibodies.  These blood tests were repeated two or three times.  I was put on a baby aspirin to try to control what my doctor called TIA’s or mini strokes.  The aspirin did nothing, so she put me on Plavix.  This also did nothing so I was put on a combination of baby aspirin and Plavix.

 

Then one day I had a stroke.  I was at work at the time.  I started feeling not right on my way to work. But, I continued on my way.  In the elevator I started to feel shaky and broke out in a sweat.  The nurse on duty at the nurse’s station took my pressure, it was 210/120.  I was immediately given oxygen and put into a bed.  911 was called.  I was in the hospital for about a week and put on coumadin.  I only stayed out of work for two weeks and despite my physician’s advice I returned to work.  Two weeks after that I had another stroke.  I was forced to stay out of work on short-term disability.  I was having seizures and horrid headaches.  Plus the excruciating pain and paralyzing fatigue.  My body was a mess.  I could not move without screaming in pain.  I managed to attempt to go back to work six months after my second stroke.  But it was an arduous task.  My mind was not the same as it was before I got sick.  I couldn’t remember little things.  I was no longer able to multitask.  The stress of my job made me sick. 

 

Then in February after I returned to work, I started to experience chest pains.  I was once again admitted to the hospital.  Where I learned it was angina.  But I was determined to try to work.  I lasted until March of that year.  It was just too much for my body to take.  Then at work I was packing a box and hurt myself.  That injury threw my body into one of the worst autoimmune flares I have ever had.  I am still not right. My pain is horrific at times and there really isn’t anything that can be done about it.  The fatigue I feel is terrible.  Some days I just lay in bed because it takes too much of my energy to get out.  I get episodes of confusion and disorientation.  I do not go out alone because I have gotten lost.  One time I was in the supermarket and just walked around there for over anhour.  I forgot where I was and what I was doing.  That episode started my depression.  It was just too overwhelming for me to accept that I was not the person I once was.  By the end of 2004 I was so disoriented and upset that I attempted to take my own life.  I was admitted to the psych ward for six days over the New Year Holiday.
My symptoms are here to stay. My body trembles, especially my shoulders and arms  I am in pain and very weak.  I feel very inapt because I am no longer able to use fine motor skills, that at times could be quite severe make it difficult for me to work.  Going outside on a sunny day means that I need a big hat, tons of sunscreen and still that does not stop my body from experiencing the effects of photosensitivity.  Even indoor fluorescent lights hurt me.  The mouth and nasal sores, the little sores on my face and scalp is a direct result of my illness. A fatigue that seizes my life and sometimes will go away for days or weeks. Of course the joint and muscle pain and stiffness are unyielding. My list of other disturbances that continue to plague my body is incommodious and devastating. I have CNS and GI involvement.  I suffer from diarrhea, abdominal cramping. I am forever getting bouts of contocondritis.  Plus I have been in the hospital 9 times already this year because of my illness.  I have been in the hospital for a load of different things, but all ending up to be because of my illness.  There the only thing that handles my pain is heavy duty narcotic meds. At home I take high doses of narcotics as well.  I call them my "Big Gun" meds.  Taking them makes me feel groggy and drugged. But, it's the only thing that takes some of my pain away.  My coumadin levels have been so erratic that I have had to be admitted to the hospital and put on heparin and given Vitamin K.  I also have seizures and they come 3 or 4 times a week despite being on medication. 

 

It seems that every time I turn around some other horrible symptom appears.  I have already been in the hospital 9 times this year.  Nothing turns out to be “normal” for me.  I can’t have a simple procedure without being subjected to days or weeks of preparation.  My coumadin levels have to be just right.  Because even a simple tooth extraction can lead to a hospital admission.  Then afterwards again I face weeks of trying to get my coumadin levels therapeutic again

 

The worst thing for me I think is the loss of who I once was.  My life should be easy now.  I had a career that I loved and excelled at.  My children are older now.  This should be the time that my husband and I should be enjoying ourselves.  But no, I spend my time visiting doctors, going into the hospital.  Trying to relieve my pain.  I sleep so much.  My body experiences so much.  I try to see past this, but so often it is very difficult.  Believe me I am not complaining, this (as Loretta put it) is just a list of the facts of my life.  But, I do believe that sometimes I am allowed to throw my own pity party.  Whether or not anyone likes it or not.  No one is in my body.  No one knows how I feel.  Everyone has a miracle cure for me.  “You take too many medications!”  “You just need to get out in the sunshine!”  Yeah, like that will help.  I’m not happy about all the medications I take, but believe me that I know going off of them will be dreadful.  If I think I am sick now, watch what happens when I stop taking my meds.