I have Rheumatoid Arthritis. I've been diagnosed with it since 2005, right about the time I turned 45. However, looking back there were a few signs of it occasionally rearing it's ugly head back to about 1998.
There aren't any physical attributes with RA, at least not on me. Many of you have probably seen others who have RA who have the huge, gnarled knuckles, crooked fingers, maybe they walk with a cane or walker (if they are able to walk at all). For some, it affects not only their joints, but also their internal organs. So far, it hasn't affected mine (let's hope and pray it never does).
I had a teacher in high school, Kathy Bertrand, who had RA from the time she was in high school. I can't imagine living such a young life with this horrible disease. At the time she was diagnosed, there weren't medications as there are now. I know she had many surgeries to try and straighten her fingers just so that she could function and her feet just so that she could walk. In the end, the disease took her life.
My disease isn't that bad. Actually, most of the time I feel just fine. Also, I don't have any physical deformities due to this disease. You can't "see" that I have RA and if I didn't tell you, you wouldn't know. But believe me, it's there.
I started getting a biologic medication through an IV drip in 2008. This was after trying a number of different medications that either didn't work or was so strong that it nearly killed my liver.
I started getting Remicade back in 2008. At that time, it was given every 8 weeks and was a 2-hour process. I had a difficult time with this medication for quite a while. I would get side effects from it including flu-like symptoms, headache, chills, and body aches for probably about a year. I even had a head ache so bad that I lost the hearing in my left ear for a day. In addition, after a while, I developed an allergic reaction WHILE it was being administered in the form of hives. They even had to stop the infusion at one point because my throat was beginning to close up. So this began my journey of pre-medicating with Benadryl (2), Claritin (2), Tylenol (2), and a steroid injection BEFORE getting the infusion.
After a while, the 8 weeks was too long so it was changed to every 7 weeks. Then, every 6 weeks. Then, my dosage was increased. Again, time between infusions was reduced to every 5 weeks and finally every 4 weeks. By this time I was getting about 2 good weeks virtually pain free. 2 weeks. Also "virtually" pain free, not completely, but mostly.
So now my doctor has decided to change my medication from Remicade to Orencia. It is also administered through an IV drip but only takes 30 minutes rather than 2 hours. I don't know if I will have any side effects during the infusion nor do I know if I will have any side effects after it. I don't know how long it might take to get any relief but I have to try it.
If you really know me, you know I don't usually complain about this disease too much. I still live an active life, I workout just about every day (even when I hurt), I play with my granddaughters (and want to continue to be able to play with all of them for many years to come), I love to work on projects, I love to build things, I love to do things with and for my kids, and I love to travel with my husband.
I don't know if there will be a cure for RA in my lifetime or ever, but I hope there will be a medication I can continue to get that will allow me to live a long and full life. I have too many things I would like to be able to do for a long long time. Also, remember that not everyone who has a disability has a physically apparent defect. There are many of us who are in pain, struggle to walk, pick things up, etc., but we don't physically look like we have anything wrong with us.
Revision
Since I composed and posted the above, little has changed for me in a positive physical direction. As a matter of fact, even with new medication, my RA has gotten worse. As each month has gone by since June, I've hoped there would be improvement in how I felt. That the medication would begin to work on those joints that were causing me problems. Instead, more and more joints have become painful and life has become more difficult with each painful day.
Simple everyday tasks that we usually take for granted have become nearly impossible. I say nearly because even though they are painful I still have to do them. Taking a shower or bath, fixing my hair, putting on and taking off clothes, writing anything with a pen/pencil, even driving. There are many others, but you get the idea. These are the simple things. There are many other things that I used to do before the pain RA took over that I enjoyed doing: exercising, crafting, working on projects around the house. Now, I do what I need to do at work and home, read more, and watch TV maybe a little too much. Even picking up and loving on my granddaughters has become painful but I'm not going to stop doing that!!
I have my moments (and sometimes hours) when I let the pity party begin. There are things I want to do that I can't and it makes me angry. Things I should be able to do that are just too painful right now.
I was supposed to see my doctor and get an infusion on Thursday, but the weather prevented me from getting into St. Louis. I was, however, able to get in on Friday and even though he was busy, he managed to fit me in. He and I (and my lab work) determined that I have had constant inflammation since changing medication in June. The current one isn't working at all. So, approval is being sought from my insurance to change yet again. It is a newer form of the previous medication I was on that worked for quite a long time. I'm hopeful that it will work and work soon. I'm also hopeful that I can possibly begin it next week. In the mean time, I just function the best I can each day.
Through all of this, I have never once lost sight of the power and presence of my God. Over the years I have prayed many things to him concerning my RA, the biggest one was to take it from me if it was His will. Well, as you can tell, it hasn't been His will. But, I know he is with me. I am reminded of this each and every day through His word. I also listen to Christian radio (Joy-FM). This morning has been especially difficult and these songs came on, almost one after the other. If you haven't heard them before, look them up. They are songs on encouragement, at least they have been for me.
Even If - Mercy Me
Joy - For King & Country
Good Good Father - Zealand Worship
All My Hope - Crowder
Counting Every Blessing - Rend Collective
Who You Say I Am - Hillsong Worship
Having this disease has certainly opened my eyes to the daily struggles of others who have unseen/unknown physical ailments. How many people that you know have autoimmune diseases who never tell you about them? Many didn't know that I did until I published this in June.
Someone I haven't mentioned before who has been my constant, my strength, my everything, has been my husband, Jeff. I thank God for him every single day.
So, I pray that this new medication will begin working as soon as I'm able to get it. If not, we'll keep looking for one that will. And pray for all of those who are in constant pain. While mine is constant now, it hasn't always been and hopefully won't be soon. But there are those who are in much more pain than I am. I'm not usually a complainer about this. It's just there. Pray for those who really need relief.
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