Wednesday, October 10, 2012

What You Can't See

Today was a really good day for me and my husband. Which cool for me and phenomenal for my husband. You see my husband has RA ( Rheumatoid Arthritis)  and so each day can be a struggle for him. The doctors actually think he may have had undiagnosed Arthritis in his teens or possibly younger. My husband being diagnosed with Ra was a relief and a shock. You see the odds were in his favor. You are more likely to have RA if  you are female, have a family member previously diagnosed, older age or smoke. He was young strong nonsmoking male with no family members previously diagnosed with RA. Though they have found some people can develop RA from body stressors like frequent bouts of infections ( like strep), allergies, stress,surgeries,and other Auto immune issues. Which is a possibility as to how he developed RA,because thankfully he does not carry the genetic marker. RA is an Auto Immune disease with no cure which means his immune system is attacking his body and causing damage. Now while most people associate it with arthritis so bad it disfigures your hands and feet, it can and frequently does affect other areas of the body like other joints including the spine, organs ( like the liver and heart), and eyes. It has not hit his hands or feet full force but his spine and hips. One hip is completely bone on bone. So the fact the he walks around and did so obviously for years before his diagnoses is pretty awesome. You then can add in the side effects from the meds to control the pain and the illness. Side effects like dehydration, bowel issues, no real  immune system ( so getting sick is a big deal) , loss of skin in his mouth ( so no more spicy foods which he loved) , lucid dreams ( so nightmares are more like night terrors) and so and so forth. You also have the constant flu like feeling, the stiff joints, the pain, the inflammation, loss of mobility, nausea in the morning, that come with flare ups. Well yesterday my husband's doctors started him on a new drug Orencia because he started having severe reactions to the Remicade. We are both hopeful and excited about this drug. It works by stopping the signal to the Tcells which cause the whole issue and trigger the immune system to start attacking the body and causing inflammation. Now usually after a Remicade infusion he would have been wiped for a few days to a week but with the Orencia infusion ( which again he took for the first time yesterday) he felt good today and had some energy.  His doctor called to check on him today and said  it was a good sign that it is going to work for him.  We have been so blessed with awesome doctors for him. Ones who care that he has a family with young kids and want him to be as active as he can be for as long as possible. Ones who temper pain control with disease control. Ones who will listen to all of my maybe it is this or what about this can this cause a flare up ( they even tested him for Lyme Disease for me just be sure. It wasn't and they were not surprised when it wasn't) They are good doctors who actually care about my husband.  Now since this disease is not one you can see it's damage or it's effects right away or all the time there are people who assume or make comments like he is just putting on a show or even that he is faking, but these people don't live with him. Don't watch him day in and day out struggle. Don't hold endless heartbreaking conversations about the frustration of not being able to do something he wants to do so very badly. They are making the comments out of ignorance or meanness and most of the time when they actually get to see his disease raise it's ugly head and really strike out they are shocked in to understanding or silence. Today though he had energy. He was able to join me at dinner with my dad and that side of the family. He was able to come home and relax with me and hopefully he will be able to actually sleep with out pain all night.  So today was a good day and I am so very thankful for it.