Friday, November 30, 2012

Just take an aspirin, you'll be fine!

It's funny how words stay with you. Those were the words spoken to me, by my family doctor back in 1988. I didn't go to the doctor often. In fact up until this point I had been pretty healthy.

That day I had gone to her for a sinus infection. Those were and still are a common occurrence for me. 

She examined me and she did some " routine blood work. "Nothing out of the ordinary. 

When I think back a little bit. Prior to this I had visited the E.R. My arm had been aching at work and I could barely lift it.

The doctor that night diagnosed me tendonitis.  He told me to ice it, take some anti inflammatory medication and rest when I could.

 I didn't connect these events at that time. I was too busy working long hours too get any rest.

Then several weeks later. I noticed the middle finger on my right hand was swollen. It had started to bend, but again I was busy with work, and being a mom, I was only 24 years old. I didn't have time to be sick

So back to the doctor's visit, she handed me the prescription for the sinus infection, then told me when we were heading out the door. Oh by the way you have Rheumatoid Arthritis. I said what do I do for that? I mean I had no idea at the time.
 I had only heard of "arthritis" you know, the kind old people get. I hope you can hear the sarcasm here.

She looked back told me "just take an aspirin, you'll be fine" and left.
At the time I wasn't panicked I thought okay if she isn't worried about it then I shouldn't be either. Boy was I wrong.

Within a week of seeing her, I was sent to a Rheumatologist by another general practitioner who could see I was in bad shape. He pretty much echoed her words. I was so weak and exhausted I ended up in a wheelchair. 

What began with a finger had now moved to my knees and wrists I was dealing with a pain I had never felt in my life. 

I couldn't sleep. I had lost my appetite. I was getting depressed.

I decided I could either give up, or go see someone else. So i was sent to a new Rheumatologist for a second opinion.

 This visit was completely different. I was examined. Blood work was ordered, he decided to put me in the hospital. 

He started me on a cortisone I.V. that day.

This  particular hospital also had also had a two week educational program about RA.

Each day was a different class. One day was a physical therapy class, the next occupational therapy. I was so tired I didn't want to go.

I remember one morning going down the hall on the way to the swimming class. The other rheumy who has basically told me it was nothing. The look of shock on his face at the condition I was in. He didn't say a word to me. 
After the prednisone, came every anti inflammatory you can name. I was started on plaquenil also. I couldn't tolerate any of the anti inflammatory medications.

Then came penicillamine, gold shots, methotrexate, methotrexate injections, I couldn't tolerate the methotrexate in either form. 

The other medications, didn't have any effect on my disease. 

I will be seeing a new Rheumatologist in December and I'm hoping for a positive experience and a medication that brings relief.

My life as I knew it changed that day. I was always an active on the go, full of energy person. I always had friends, loved to go dancing. 
As I sit here now both of my wrists have been surgically fused. They fused on there own from the RA at the beginning, then were surgically fused to take away the pain.

I had my right knee replaced in 2010.

This year they had to attempt to repair the nerve,  so i had surgery again. i have foot drop and tingling in my toes but at least i can walk.

I have also had cataract surgery, my optometrist believes it is due to past prednisone use.

I no longer live in the same area that I used to, and I'm also remarried. The people in my life
only know the person that I am now not the person that I was.

I find it very hard to meet new people. Especially when you're exhausted and in pain and most people don't understand, or don't even bother to find out what's going on with you.

I find when you are too sick to go somewhere, instead of people being understanding they stop inviting you.

It's bad enough to be in pain and tired all the time, but for people to make you feel guilty about it, I think is even worse.

The people in my life who knew me before my illness stayed with me after.

Most people in my life now don't even try. Not even a phone call to ask how I'm doing. I don't want pity. I just want to be treated like a human being.