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.
2012 Improvements and Discoveries
2012 was an interesting year with a lot of changes. The addition of taking the sleeping pill called Ambien increased my quality of sleep and the switch to Cimzia reduced my pain and fatigue. So 2012 was a good year but many strange things go with it, like with the use of Ambien. First I find it strange to take a drug that has labels stuck to the bottle like do not drink alcohol, take on an empty stomach and to use caution when driving a vehicle or operating dangerous machinery. Then you pull the insert out of the bag and it lists sleep walking, sleep driving, binge eating and performing other daily tasks while sleeping as side effects. Just a little crazy tell me what to do and what not to do then tell me I may do it anyway! So far we have only lost some honey mustard pretzels and peanut butter cookies with milk which caused me to have a stomach ache and Lloyd to miss out on some cookies. I wonder why I do not sleep eat fruits and vegetables? And why can’t I do some dishes and laundry while doing other tasks while sleeping? I also have strange dreams which can be a little humorous and sometimes a little creepy but I am not fighting off spiders or anything like that. Still I may need to switch sleeping pills, not sleeping as great lately but still better then I was before I started taking it.
I began the year with extreme pain in the shoulders and neck which led to me writing bad week with hard lessons and learning to sleep against the wall because laying down caused extreme pressure in my head. I still have not been able to take laying down on a bed; instead I use a neck pillow and sleep on the couch so I am propped up some. Using the neck pillow was a great discovery for me and has relieved stress in my neck. I later learned that my neck is now curved opposite of what it is supposed to be, one disc is thinning and another has slid into my spine just a little. The doc says I am fine though. I will say anytime my shoulders/neck are even a little stiff and I look up when looking down or if moving my head from one side to another I get dizzy. I also deal with pressure headaches, brain fog, breathing problems and optical migraines that increase with stiffness so it does not feel fine to me but the tests show it is no big deal.
I learned to remember to use my Bluetooth when making phone calls but even if I do that does not mean I will be great in a conversation; fatigue still happens. Now if I can remember to look at the postit notes or read reminders that pop up! I also learned bar stools are evil as they not only increase pain but pressure headaches, breathing problems, choking, light sensitivity, brain fog and fatigue. It seems to go with how stiff or weak my shoulders and neck feel because of the way the disease is attacking more than my joints. The choking and breathing problems started around the same time the stronger attack on my neck and shoulders started happening. I remembered my mother choking often when eating and drinking, I thought it was normal for a Rheumatoid Arthritis patient to deal with it. The breathing problems started happening when the choking problems started, I thought it was my allergies or asthma but have found it is related to the amount of stiffness or weakness I am dealing with and chances are greater for both the longer or more I have done during the day.
The switch from the low dose chemotherapy (Methotrexate) and the biological drug (Enbrel) to the biological drug Cimzia has been good improvement for me also. I have gone from pain 24 hours a day to periods during the day with no pain at all. I can kiss my boyfriend without a sharply increasing pain in my neck so he no longer feels like such a pain in the neck. I can walk on driveway slopes without increasing foot pain. Instead of my weekly outing being Lloyd driving me to the store for groceries, I can make it out for Business & Beer with new friends and out many other times during the week. I can get groceries on my own and drive myself around most of the time.
I forget I have my shoes on most of the time now. I can move my shoulders to the music and carry my purse. My dog is no longer losing hair; he can lie next to me and usually not cause me pain. I have even been able to pick him up more often and have him sit on my lap; he is only 11 pounds. I noticed he had learned to stay away and is now coming up to me more. I also learned both dogs will stick near me when I am in the worse pain especially if Lloyd is not around. But Hershey is not getting so lucky when I juice now, not as much falling to the floor.
Not only can I lay my arm above my head again without losing feeling in it but I was also able to workout many times during the week before the end of the year when the rain and weather change here. Cold and rain have always been something that increases pain, fatigue and stiffness for me. So I am hoping that working out will happen again as it warms up. Overall improvements over 2012 have been great even though I now have damage in my neck.
Here is another song for your music therapy list:
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.
Where’s my socks?
A strange title but I have really missing my socks, around a dozen pairs disappeared. The last two weeks when I did laundry I only had a few pair of socks and I knew I had just bought some so I should have more than 3-4 pair. When I go to bed they are on my feet, when I get up they are gone. This week I was looking for my sweater and found a big ball of socks in the chair next to where I was sleeping. I have been pulling them off in the middle of the night and forgot about them in the morning. Finally I have socks again! I had to giggle when I found them, I forget things but this time I forgot my socks.
Is Cimzia working?
I finished the loading doses and this month was my first full month between shots. Last week I felt great all week, the change of taking 2 muscle relaxers (Flexeril) made a difference. Last Thursday night we were out for Business n Beer and Lloyd’s birthday. I sat on a bar stool for about 5 hours, I could feel soreness across my back by the end of the night. It was tighter the next morning and I felt it throughout the week. I will try harder to remember to sit with my back to the wall for some support the next time! Some lessons are forgotten, I usually make sure I’m sitting in a chair with a back to it, especially if it is going to be for a couple hours.
Before Thursday night the week was pretty good and I had some pain free days. Now I am looking forward to the next 2 shots of Cimzia on Saturday, I have felt some soreness in my jaws, hips, shoulders (when washing my hair or juicing), feet and fingers the last couple days as well as fatigue. The pain just feel like I am bruised and it comes and goes. I remember the same feeling as the Enbrel started working so that gives me some hope that I may find myself in remission again soon.
Even though the stiffness and pain has been better, I have still had to deal with feeling anxiety, feeling frustration and fevers. Next week I see a gland doctor (Endocrinologist), hopefully that will be the start to taking care of the Thyroid issues.
Rheumatoid Arthritis Support
If you are a patient with Rheumatoid Arthritis (aka Rheumatoid Autoimmune Disease) or a lovegiver (aka caregiver) please take some time to visit Rheumatoid Patient Foundation the first organization for RA patients by RA patients. If you are an RA patient, please take the time to answer our survey. You can also sign up as a member and have access to the private patient forum for $25 a year. Running short on cash; then here is your chance to become a member for free. How? Just leave a comment on this post by July 31, 2012 and on August 1st I will put the names in a hat and draw one person and give them a membership. In the comment please answer this question; what other diseases have you been diagnosed with besides Rheumatoid Arthritis?
Also you can join us on Sundays via TweetChat – #rheum at 12:00 P.M. PST. We feel your pain and frustrations, please join us even if it is just to vent, we understand.