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?
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.
In November I signed up at the local gym so I could start working out again on the elliptical, it has been awhile and something I have really missed. November 15th was my first day back on an elliptical. I felt like it may cause issues with my shoulders or neck later on since my shoulders and neck has been where the strongest pain and stiffness are and the damage in my neck. I was surprised to find that my right hip was giving me the greatest pain but I was able to keep going. I did feel some pain all evening and thought I might have over done it. The second day the hip pain was gone but returned during the first 10 minutes of my workout then it went away after it warmed up and did not come back after the workout. It seems the days I am working out consecutive I do have less pain and stiffness and the days I skip I have a greater chance of feeling some stiffness. Usually more on my right side, shoulder, hip, knee, ankle and foot lately.
I have also learned not to place my hands on the heart monitor grips right in front of me; it caused a strong fluttering in my back of my neck. But I can use the handles that move to workout my shoulders or put them on the outside curves of the monitor grips. During my first remission I would go to the gym with my sister. She could go forward and backwards on the elliptical and I found I could only go forward, going backwards made my knees hurt so I just kept going forward. Rheumatoid Arthritis can make it hard, you never know when something is going to cause you pain later and sometimes all you can do is keep trying. Sometimes it is hard to know when to give it up; it is something I have issues with. I found this great motivational video being posted on Facebook the last few weeks, “They Were Wrong” and it is how I feel, when I am bitching and screaming on this blog that is because I have a hard time accepting that living with this disease is okay, it is not. I accept that I have it, I have had it for a long time, I just do not accept that it is okay and I am thankful for everyone who donates, promotes and works for Rheum4us.org to keep patients attending conferences, getting information about the disease to the media as well as supporting patients.
So I have tried to track working out by posting on Facebook how much time and miles I do on the days I go workout. I do not know that I remember every time but I try to track it that way. It has been 25 days since I joined the gym and I have went to the gym 14 days so far. I started out doing 2 miles in 30 minutes and I am up to doing 4 miles in 60 minutes. I have gone 39 miles and spent 10 hours and 30 minutes on the elliptical. I am hoping to strengthen muscles and lose some weight. I feel like my spine, shoulders and upper back are getting stronger, not perfect but I like the direction I am going. Continue reading
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.