Wednesday, March 16, 2011

So what is RA anyway?

Web MD explains it best: 
Rheumatoid Arthritis - RA for short, occurs when the immune system goes haywire and begins attacking joint linings. Rheumatoid arthritis is a chronic inflammatory condition that also affects other tissue, but the joints are usually the most severely affected. 
As rheumatoid arthritis develops, some of the body's immune cells recognize one type of the person's own protein as a foreign intruder.Cells called lymphocytes react to this protein. The reaction then causes the release of cytokines, which are chemical messengers that trigger more inflammation and destruction. With rheumatoid arthritis, the main target of inflammation is the synovium, the thin membrane that lines the joints. The inflammation also spreads to other areas in the body ultimately causing not only joint damage but also inflammation, chronic pain, fatigue, and loss of function.

  So there you have the medical meaning,  Let me further that explanation and say this is not your grandma's arthritis or the arthritis you think you have in your pinky finger. Tylenol or Alieve will not help me. My age has nothing to do with it, RA does not discriminate.  I can't take a magic pill and feel better. RA can affect any of my joints and during a bad flare it can affect them all at one time even my jaw, it can be so bad  I can't get up from the couch or pick up my son. The fatigue is usually the worst and no matter how many hours I sleep I just want to crawl back into bed and sleep forever. The pain can be constant and unrelenting. It messes with my head and I feel alone, hopeless and that no one understands.

  With all the bad I am still reminded I have a great support system. Other bloggers offer advice, facebook has some great connections to RA pages, my husband - I don't know how you put up with me half the time but I am thankful and blessed for the love and support that makes the good days that much better and of course my son who makes me laugh every single day no matter how bad I feel. My aunt that calls me weekly to check in and keep my spirits up and my cousin who texts me just to say how you feeling and my work buddy Wendy who puts up with my whining and is always there when I need her and of course my other work friends who take time to listen and my  facebook buddies who really mean it when they ask how are you :) and a huge shout out to to my RA girls Nikki and Charity you girls have been a constant source of understanding and support who take the time to listen even if you aren't feeling so great yourself. You know how I feel and accept the good and bad days and I hope I am as good of a friend!  This all reminds me I'm not alone with this horrible disease.

My RA story

I'm not even sure how long I have had RA. Officially I have been diagnosed for 18months but I suspect I had symptoms long long before. Even when I was 18 I had pain in my wrists and and my feet would hurt horrible after working but I thought this was all part of the hard restaurant life. Somewhere along the line it would get worse but a bunch of ibuprofen always helped. Eventually one of my fingers swelled up and doc said just take ibuprofen blah blah  the pain was tolerable and controllable. In late 2007 I got pregnant with my son and one day I noticed all my pain was gone, I thought wow pregnancy cured me!!  After he was born I felt on top of the world. Beautiful baby no pain and life was good.  Around the 4mo mark right before going to back to work I noticed one day I was really stiff in the morning and I couldn't get one of my sons bottles open and I knew things were coming back but it was still bearable. My boy slept through night pretty early on and for the most part I was ok but when I went back to work but the fatigue was something else I had never experienced and I was getting a good nights sleep.  I finally got to a breaking point and went to the doctor. Some initial blood work was done and at a follow up my vitamin D was determined to be at 9...30 is normal but 50 is preferred. She also said a test called SED Rate was high but nothing that raised flags. So she gave me a prescription  for vitamin D and said come back in 2 mo and we will recheck. Nothing got better but worse. At my next appointment still nothing improved and she thought I needed anti-depressants. So I agreed. Things got worse still and at every appointment I was told to come back and then at the last one she was pretty much dismissed me said vitamin D was up, Sed Rate was ok and other arthritis tests looked ok.  I left in a daze and thinking  nothing was accomplished and I feel worse!  That night I called my aunt and told her what happened and she said I really think you should see my rheumatologist. I debated and finally called and I really thought this guy was going to laugh at me and ask why I was wasting his time. A month later my appt came and he found joints I didn't even know hurt and said you have a lot of swollen joints and he put me on prednsone and re-did all my blood work. At my follow up he said to me you have rheumatoid arthritis there is no doubt in my mind.  I felt in a daze. He added methotrexate to the cocktail and another follow up..... no relief,  increase relief, switch to injecting the methotrexate instead of pills. NO relief.
4mo after diagnosed my doctor recommended Remicade the big guns. This drug is given by an IV called an infusion and takes 2 hours. I think this when I realized I have RA.  The first infusion came and that night I couldn't sleep. Ended up not being bad at all. I had to go back in 2 weeks for the next infusion and by that night for the first time in a year I walked down my stairs with no pain! The next infusion was 4 weeks later and then every 6 weeks. This was my miracle drug and I felt normal. Looking at RA message boards I felt like a fraud..... I felt normal and other people were in so much pain. Well my miracle drug started to wear off about 6months later. My doc increased the dose still had a flare that month. He had me come in every 4 weeks but the meds are wearing off after 2 weeks. This has been going on the last 6months. My doctor just called me last week they found the medicine was not staying  in my system when they did the last blood work which explains the horrible flares so soon and he is increasing the dosage at my next appointment and I am praying my miracle drug comes back to me!

"It takes a strong person to handle a strong disease"


  1. Genny, awwh I miss you. I'm going to say all sorts of things because I talk too much. I pray for you, and the prayer is huge. That they find a cure, that your next "miracle drug" takes away your pain and gives you back your energy. That you lived next door:-)
    I'll give you the words that someone gave me..however bad it gets, tomorrow is another day,going through hell again, you know the way... that you can make it to the other side, because you always have and you always will however you have to. Love you honey, message me anytime.

  2. thats a good way to explain it! but unfortunately unless you have it, you will never completely understand. :-( Thanks for the shout out! I'm glad to have met you and Charity through has helped a lot to have people to talk to who "get it" you guys are the best <3!