Saturday, May 31, 2014

Living with Pain: Auto Immune Disorders

I was reading a post by someone I met when I first joined twitter and she wrote about a woman whom she saw who had lupus (you can find that post here) and although I don't have lupus, her post touched me.  I do suffer from an auto-immune disease and while it is nowhere as bad as lupus, it still takes a toll on my daily life.

I have a disease called rheumatoid arthritis.  I was diagnosed with this disease 6 months after I gave birth to my first baby, although the symptoms started almost immediately after she was born.  I had severe pain on my left side that made me cry every time I tried to lift my arm up or move my hip.  I spoke with the nurse and she said it was most likely that I had pulled some muscles during childbirth.  A fair statement considering my daughter was only hours old and after I was given some ibuprofen, I felt a little relief.  

The weeks after her birth were marred with more pain and such stiffness when I woke up in the morning, going down the stairs was so hard.  The extreme fatigue was brutal but  I chalked this up to having a newborn as I had heard other new moms stories and the fact that our mattress was old. It went on like this for about 4 months with the pain coming and going.  One morning I woke up and I couldn't bend a single finger on my hands.  They were bent over and bright red.  I couldn't even pick my daughter up.  I was in so much pain and I had no idea what was going on.  I went to the doctor's office that day.  They sent me for some blood work and told me I could take some super strength Motrin but only once per day as I was exclusively breastfeeding my daughter.  

For almost 4 days I waited for the results.  I needed to know what was going on with me.  I got a call from my mother and she told me to come in the doctor's office (she was working there at the time and her voice sounded like she was crying) as my family doctor wanted to see me right away. Obviously I was upset and worried.  I had a new baby and I couldn't think of anything but that I needed to see her grow up and I had no idea what was going on.

The first thing my doctor said was you have a 50% chance of having lupus and a 50% chance of having RA. What?? There wasn't anything like that anywhere in our family medical history.  Where the hell did this come from? Why now?  I waited what seemed like forever to get into a specialist and after multiple tests and blood work the results came back that I had RA.  So what now?  What did this mean for me?  Let me explain what RA is:
Rheumatoid arthritis, or RA, is a form of inflammatory arthritis and an autoimmune disease. For reasons no one fully understands, in rheumatoid arthritis, the immune system – which is designed to protect our health by attacking foreign cells such as viruses and bacteria – instead attacks the body’s own tissues, specifically the synovium, a thin membrane that lines the joints. As a result of the attack, fluid builds up in the joints, causing pain in the joints and inflammation that’s systemic – meaning it can occur throughout the body.
Rheumatoid arthritis is a chronic disease, meaning it can’t be cured. Most people with RA experience intermittent bouts of intense disease activity, called flares.  In some people the disease is continuously active and gets worse over time. Others enjoy long periods of remission  – no disease activity or symptoms at all. Evidence shows that early diagnosis and aggressive treatment to put the disease into remission is the best means of avoiding joint destruction, organ damage and disability.

I started on medication right away but I could only take a certain medication as I was breastfeeding and unfortunately, about 4 weeks after my diagnosis, I had to make the decision to stop breastfeeding and be able to take care of my daughter or breastfeed and not be able to hold her at all. The medication regimen was ridiculous.  I was taking 3 pills and injecting myself everyday and it still wasn't controlling my illness.  My doctor suggested I try one of the new medications just made available on the market called Enbrel.  It is known as a "biologic" drug.  It decreases my immune system therein stopping it from attacking my healthy joints.  It also allows my body the chance to heal, in the sense that it doesn't allow any further damage to my joints.  All I have to say is thank god for this drug because without I probably would be far worse than I am today.  Unfortunately, if you do not have an excellent drug plan, this drug is extremely expensive.  It costs around $1,750 per month for 4 needles.  Thankfully, when I really needed this medication, I was covered on my now ex-husband's plan.

Everyday can be a struggle for me. I have really great days and then really bad days.  Sometimes the pain brings me to tears.  It has been a long road to get to where I am today.  Thankfully, I have been in remission for almost 3 years and although I do still get the occasional flare up, I am doing okay. I always know in the back of my mind that it could come back and be worse than it was before, but for now I'm taking one day at a time.

To find out more visit:   The Arthritis Society

4 comments:

  1. Wow. I must admit, I probably should read up on arthritis, but as it hasn't gotten to me yet, I've been avoiding the topic. Your article is informative and insightful. I am so sorry you have to go through it. But glad to hear that you're doing ok!

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    1. Thank you, I am just glad for the remission :)! Thanks for sharing!

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  2. Thank you so much for sharing your story, Jessica. Although I have tested negative for most RA and Lupus markers, I am currently on 2 DMARDS (suspected psoriatic arthritis), so I do know exactly what you went through. Will likely be on Enbrel soon enough. Stay strong!

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    1. Honestly Lena as much as the Enbrel costs, it really was a lifesaver for me. I was able to have my body back with little to no pain. Thankful for my remission right now but if I have to go back on medication, it will be Enbrel again. You stay strong too :)

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