It has been over eight months since I found out I had Biotinidase Deficiency and not Rheumatoid Arthritis. My health has still been improving each month. I am amazed at how much energy I have, sometimes I do not know what to do with it. I just started being able to sit at the computer again in January with slight pain and last month without any pain. If you have been sick for years and hardly able to stand and then was all of a sudden pain and fatigue free, I think you would have a hard time sitting around as well! Both the pain and the huge amount of energy kept me from sitting down at the computer. I baked as much as I could and kept track of how many hours I could stand on my feet without out pain. Then a few months ago I realized I could be on my feet all day without any pain. It is awesome!
Earlier this month we arrived home from Phoenix and the last hour of the ride in the car I cried because I could not believe I was not exhausted and had no pain. No hip pain, no foot pain, no shoulder pain, no knee pain and no neck pain. Then it rained that week and I cried again because it was raining and I did not feel any pain or fatigue at all. Then I realized that I cried twice that week without any pain; usually it caused extreme headaches or caused me problems when laying down flat at night. My shoulders are still weak; I am hoping to work them out a little somehow. Lloyd wanted to start doing some Tai Chi so we may start with that or some yoga.
Now I am ready to work and need to get to work. I have been extremely lucky to have sold so many web hosting clients before I was too sick. Income recently has dropped to an unacceptable level so right now I am trying to figure out what I am going to do. Do I want to stick with technologies? Do I want to rebuild the company? Should I just work for someone else? Should I get into baking full time? Should I go back to school and finish getting my Masters in Business Administration? I feel a little lost on what to do now, I have never in my life had this much energy so I don’t know if I want to sit at a computer all day anymore. But I have been in online technologies since 1998. Any suggestions?
It has been an amazing month of standing as long as I like, forgetting I have my shoes on, walking up and down hills at the flower park, forgetting I have my purse on my shoulder and holding my camera with the heavy lens and flash unit on it without any pain. I have not felt this pain and fatigue free since 2009 and I have missed it! Mobic has been providing the extra relief in the last month. I am unsure if this drug can be taken long term. I stop taking it in another 6 weeks, so I am going to enjoy the pain free times while I have it.
In 6 weeks we will see if the 10 mg of Arava in combination with the Cimzia keeps me pain free. Also it will be warmer then and I could be pain free because of weather. Can Mobic be taken in the winter months only? For me this is the start of remission and hopefully with a few tweaks of drugs I will stay this way for awhile.
Seems like that is what my Rheumatoid Arthritis may be doing to my thyroid. Two out of three tests in the last year have come back hypothyroidism. I have also had symptoms of hyperthyroidism and some of the symptoms can be from the Rheumatoid Disease and the drugs, this makes it a little more confusing. According to PubMed Health hypothyroidism can be caused by “An attack of the thyroid gland by the immune system“, which is what the Endocrinology doctor believes is happening. We could start treating now or see if I can lose weight now that the Rheumatoid Disease (previously known as Rheumatoid Arthritis) seems to be coming under control and test again to see if I am in normal ranges again. So 10 days ago I started to watch what I am eating and going for longer walks to see if I can lose some weight. I have lost 5 lbs so far. Continue reading
Last week I had a bad flare, one that made it at times hard to sit and hard to hold my arm up to the keyboard and mouse. We had 4 or 5 days of rainy weather, I lost track. Friday through Sunday was my worst days; I am not sure why cold or rain aggravates my Rheumatoid Disease (previously known as Rheumatoid Arthritis) but it always has. It was pretty frustrating because I had work I wanted to get done and the rug was pretty much pulled from out under my feet with the “flare”. Rheumatoid Disease is not something I can control; even medication does not make me “flare” free, even during a “remission” period.
During the flare the pain was so high I started to experience anxiety which was high during that weekend and took over a week more before it was completely gone. Even more frustrating was today when I realized I had Flexeril muscle relaxers that would have probably reduced the amount of pain I was in but I did not even think about them. To try to explain how bad the anxiety from the pain is, I started watching just the food network. How can that cause additional anxiety? Well the cook was making some chips and some were from sweet potatoes, but they were white. I had never seen white sweet potatoes so I was feeling upset that she was smiling and cutting up these sweet potatoes that did not look like sweet potatoes to me. Also Lloyd mentioned to me that he picked up a TENS unit for me to help reduce pain and I was upset that he was getting me something that would electrocute me. I really wish I would have thought of the Flexeril hidden in a drawer but the pain went up so quickly and I was too exhausted to think about them.
I have been enjoying less pain and stiffness and more strength since I started on Cimzia at the end of May for Rheumatoid Arthritis. I still have stiffness and pain daily but it is mostly at night and very low levels. I started to think about the improvements I have had since the change of treatments. Sometime in September I stopped having to take muscle relaxers, which has been nice. I also can stand on my feet a little longer, definitely have my energy back most days, and I can carry my own purse. I have been able to bowl on Xbox and do Wii fit again. I even started doing 30 to 40 minutes daily on an elliptical this past week. Oh and I can pluck my own eyebrows again, still not very good at it but I can do it!
I am very thankful for the chance to exercise again. It is very hard to deal with a disease that limits your ability to move and even lifting your own arm over your head. I am looking forward to greater improvement as I exercise and work off the weight gain over the last 2 years of flaring. I did see more improvement when I was able to exercise and work off the weight the first time I went into “remission” while on Enbrel in 2007.
Anyway I decided to make a timeline chart of the start of “remission” on Cimzia, see below.
I hope you have a Happy Thanksgiving! What are you thankful for? Here is a little more music therapy, which reminds me I am thankful for being able to bop my head and move my shoulders to the music again.