Well I won’t be able to call this a daily health journal if I don’t start writing in it more. Just by the time I get done with running my errands and taking care of my responsibilities I go to lay down and once I lay down for the evening I don’t move again until morning.
It’s 3 am and I am up with acid reflux. I don’t know how someone with acid reflux as bad is mine forgets they can’t eat pizza, but I ate it. I suppose its better than being up with a migraine or other pain.
Monday I had Steve Ito work on my shoulder again and it hasn’t bothered me since. He also worked on my migraines again and my morning migraine wasn’t there when I woke on Tuesday.
I also saw Dr. Le about the Remicade and Psoriatic Arthritis on Monday. I was hesitant to have the Remicade every 6 weeks instead of 8 but the pain does come rushing back after just a couple of weeks and I want to get the most benefit I can from the Remicade so I am following his advice and getting the infusions every 6 weeks instead of 8. Its a hassle since I can’t drive myself and its so far away. It means someone’s whole day is taken just driving me there and back and waiting for me while I have the infusion. Dr. Le told me about a law called the Family Leave Act, where an employer must give a family member time off to get necessary care. My husband does get family medical leave but its really good to know about this law and I am sure it can help others if I don’t need it. Basically a doctor would just need to fill out forms that any HR department would have. Still I know I am out of service for a couple of days after the Remicade, and that I am asking someone else to take a whole day for me, made me hesitant about agreeing to the more frequent infusion. But it really does seem to be working, and I so much want to live a normal pain free life.
I have read that the Remicade is a chemotherapy, and I know its not as brutal as cancer chemo, but it was still a little shock to see it in writing on some paperwork the office gave me. I guess if it works they can call it whatever they like.
Some wonderful news is a friend is going to be sharing a little art studio/gallery space with me. It’s going to be something that will work around my illness, we will but a heater in, and a sofa with lots of little throw blankets so I can be comfortable when there. It will also have tons of flexibility so I won’t need to go in at all on bad days.
I have been getting horrible migraines for the last few days but after two doses of Meds they fade away. My arthritis is back to being bad in the morning and evenings but hardly noticeable mid day. I went to the chiropractor Friday because my ribs were dislocated and some he fixed easily. One was pushed in instead of out and he tries several ways to fix it. It’s gotten worse since then and might be causing the migraines. Just a list of complaints this morning.
Three full days of training at a Burridge workshop, plus starting my own class this week sent me early to bed each day. I have been waking up sore and achy, but that fades in an hour or two and by the time I get to class I am ready to absorb it all and get some work done. Then I go go go and focus and don’t even realize my body is annoyed until I try to walk to my car at the end of the day and my legs don’t want to work. By the time I am nearly home it hurts to press the gas pedal and hold the steering wheel. I have crawled into bed where my family has met me each night with dinner and we have all eaten in my bedroom and watched the daily show and in the morning I do it all over again.
That’s one wonderful thing about this illness, over doing it won’t cause any permanent damage or put me in the hospital, it just all adds up until I can’t get out of bed for a while. Today is that day. On top of my body refusing to move today, which I rather expected, my head hurts like a small bomb went off in my brain. Its the worst migraine I have had in weeks.
But today I have the luxury of not having to do a thing, and my body is telling me that is exactly what it will demand. Still I am glad I made it through my workshop that I worked so hard to earn the money to take; and I feel so fortunate to have a job that I love that has short manageable hours that I always seem to handle no matter how I feel.
After a few days of feeling recovered from my surgery and not feeling too bad other wise I woke up yesterday morning feeling tired but ready for my full day at Robert Burridge’s workshop. So focus on the workshop I don’t recall feeling tired or achy, although after about 1 pm, I started getting really clumsy. I kept tripping on nothing, and even falling down here and there, dropping paint brushes and other things. By the time four o’clock came around I was shaky and oh so tired. Driving home I realized how much my body was aching head to toe. When I was a few miles from home I just felt like giving up. I felt like pulling over on the side of the road and crying. It was effort to keep my focus on the road and keep my hands working on the steering wheel.
When I got home I knew I had work to do and no energy left to do it with. I felt that if I laid down for a moment that would be it and I wouldn’t get back up, at least for the night. So I rallied my energy and strength and worked as hard as I could to finish packing my work bag for tonight, as well as some additional stuff for Burridges workshop. Luckily Tim came home and finished the packing for me and loaded the car. By that time I couldn’t make it upstairs myself and actually needed help getting into bed. I can’t remember the last time my psoriatic arthritis hurt so badly. I took some medication and got a massage, and just lay there half asleep for a couple of hours. My family all then joined me for dinner in bed, which was a real sweet gesture. I feel asleep shortly after dinner and woke up with a migraine but feeling a world better.
Today is going to be busier than yesterday, I will be leaving the workshop early to go teach my own art classes. I must remember to drink plenty of coffee today to assist the adrenaline I will have from the excitement of seeing some of my favorite little ones in class today.
It will be a hard busy week physically, but I am sure once I get through it, it will be great for my spirit, knowing I can do what feels to be absolutely impossible; And yet, its less than most people do everyday. Its very clear to me that if I had to depend on my own income I wouldn’t have the luxury of working part time, nor the health for a full time job, but I would be one of those people some of my friends look down on, who must live on a monthly disability welfare payment. I would say to those people who judge others as weak or lazy or parasites that it is hard enough to live a life with a chronic illness but being judged by others can increase the depression and feelings of worthlessness and shame that we always deal with daily.
Third day now waking up with a migraine but one dose of meds seems to clear them right away. Getting around now after the gallbladder surgery and most the pain from that is gone. I have been going through a lot of stress on a personal level and I noticed a spike in arthritic pain twice after talking to a stressful person yesterday. I have never noticed this correlation before and maybe its just a coincidence, but something non-the-less to pay attention to. It was also a raining day and I am certain that contributes to my pain.
Raining today but feeling just fine this morning, which is good, I have work to do before I go visit my grandmother.
I woke with a migraine, it was fairly bad, it hung around most the day, even with meds and trying to paint it out. Exhausted but maybe thats just from the pain. Arthritis wasn’t too bad today, maybe greenish yellow on the pain scale.
This morning I went to the doctors to get the staples out after my gallbladder surgery. My hips hurt from arthritis enough that I was limping, but I was able to sweep the downstairs before having a PTA member come over to do some paperwork.
By 3 pm I was laying down and am tired but not feeling horrible. Every day I get out of bed and dressed is better than doing neither of those things.
I find it interesting that my arthritis didn’t bother me in the hospital or the first week after the infusion or most of my recovery very much. Maybe it works better right after the infusion then fades as time goes by. Hope this is a good sign for the Remicade. And I am so lucky, made it through surgery, and recover with no infections!