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:
There is no class for dealing with sleep and Rheumatoid Arthritis (RA) but it is an art of learning how to position yourself so you can sleep. I have been thinking about writing this post for a couple weeks and then my older sister called today, we were discussing our the aches and pains of Rheumatoid Arthritis (also known as Rheumatoid Autoimmune Disease; see we refuse to be mislabeled). My older sister mentioned she talked to my younger sister who was having some aches and pains. It reminded me of last spring when I had talked to my younger sister and she mentioned it was hard to learn to lay on her back when she was dealing with pain in her hips and lower spine. All I could say was yes it is hard to learn to lie on your back.
So I kept thinking, what did I not say? What did I keep to myself? My first lesson of sleeping with Rheumatoid Autoimmune Disease (RAD) was learning how to keep moving at night. It is easy to learn to do but frustrating to have to do it. Basically when I start waking up because of pain I rotate my body to relieve the pain and fall back to sleep. At times I could do this every ten minutes, other times once every hour. Usually when I have nights like this I can take some Benadryl and it will help me sleep through the mild pain and stiffness. But if the pain and stiffness is more constant or higher pain levels I do not just sleep during the night, sleep becomes a 10-24 hour process since I am waking up so often.
It has been awhile since I updated so here we go. I switched from Arava to Methotrexate four weeks ago and I’m starting to feel much better now. I am not 100% but 80% is good! Looking forward to being able to carry my camera around and take some good photos :). Still taking Enbrel and B12 shots weekly. Currently enjoying not feeling like I was ran over by a truck.
The new year came and went by so fast! Since I was not feeling well, I did not get to do a post on my resolutions for this year. First, I decided I will go back to a notebook in my purse for my health log. Instead of trying to post what I’m dealing with or how I’m feeling in this blog daily, I will try to do a weekly post in my health log.
Secondly, I decided to start writing more about Rheumatoid Arthritis (RA). It was my intentions last year to have articles on this blog and not just a health log. Unfortunately, I was sick several months during last year, at both the beginning and the end of the year. Winters have always sucked for me. After I start feeling better, I end up spending most of my time catching up on everything that I need to do for my business, kids and home. I am still trying to catch up my photo blog, Geek Good Girl. Last year I started the Project 365 and because of not feeling well the last few months I have not finished the year. I have about 45 more photos to go, so I will be catching that up. I am hoping to start covering more marketing conferences on Geek Good Girl and of course post more photos. I am not going to continue Project 365, that way I will not have to worry about catching it up. Instead, I will post when I feel good or when I cover a conference.
Lastly, I hope to start or become involved in a non profit for Rheumatoid Arthritis. I have a few ideas and a friend with a PhD that can help with grant proposals; he does that for cancer research. I am also hoping some friends with RA and those without RA would be interesting in being involved with this non profit and ideas. So if you are reading this post, feel free to contact me. Social site links are in the sidebar —–>.
Since I have a thing for photos, I thought I would include a few in this post. My boyfriend has taken many photos of me in the last year. In previous years, I have not let him post photos of me when I was wiped out from the RA. Last year I got over it and let him post them as well. It is a part of my life. Funny, at the end of the year someone mentioned they can see in the photos when I am not feeling well. I always can see that in the photos, but my boyfriend does not really notice. Just like I don’t notice when he has gained weight. He always ask why I didn’t tell him he was that fat, I guess it just not what I’m looking at :).
This photo was while I was feeling good, on a flight to Ireland, with my boyfriend. I can say I had a blast in Ireland. I have not walked that much since before I had RA. I was shocked at how much walking I was able to do without pain. (Day 255 of Project 365).
It has been awhile since I did an update. I have been feeling good, not much pain or stiffness in joints but I have still been dealing with my back. I did finally get off the Flexeril in the last week.
I have added a this stuff called take charge that I can add to my yogurt and it gives it some crunchiness, it is a multi vitamin. I did notice there was not any Vitamin D in it so I picked up some Calcium Plus Magnesium and Vitamin D-3 from GNC. While I was there I grabbed MSM, Omega Complex and Glucosamine the non shellfish kind. A few days after starting them I noticed my back pain went down some but not all the way. I tried no Flexeril and the pain was down enough that I did not need the Flexeril, but I did need to do more stretching. I found doing enough stretches at night before going to sleep and I wake up without any pain. If I do not do enough then I wake up with stiffness so I do more stretches. It has worked so far!
I am in Los Angeles visiting my boyfriend. We went to Sequoia National Park, Kings Canyon. and Yosemite National Park to take some pictures. So I did get more exercise this last week. We are back at his house and last night I went for a walk with him and Buddy.
My feet did swell up after a walk down and then back up a hill in Sequoia and the pain was around a 3. The next morning they were fine. When we went to Yosemite they got a little swollen by the end of the day but just a 1 on the pain scale. I am still dealing with back pain if I do not take the three Flexeril.
I have noticed more sweet cravings since I started on the Flexeril.