I tend to only blog about my PsA when I am feeling absolutely miserable or wonderful. Truth is a great part of my life is spent in the mid zone. I wake stiff and achy, with trouble walking but after a couple hours I am perfectly fine to run a few errands and get some chores done, paint a bit, meet a friend for coffee, and run carpool. Actually most days I can do maybe two out of four of those things. After carpool though most days I am in bed for the rest of the day. Most my dance classes have been put on hold, except for tango, which although hard to get the energy up for, is gentle on my body and doesn’t wear me out.
I am very fortunate to have kids who are self sufficient and will do their homework without worry, a partner who not only takes over at home, but takes care of me when I need it, a part time job that I am passionate about with wonderful hours. I also have some amazing friends who understand when I disappear for weeks sometimes months at a time, because I am either too sick to go out, or feeling good so I am living manically and doing too much to have any social time.
So my body is Eh, but I am feeling grateful and content. My meds are working, maybe not perfectly, but the fact that I can dance often and walk without a cane, and get out of bed every single day is good enough for me. Life is worthwhile, every day, and I am living it. I am not without pain, but who is?
Today I get my remicade infusion. I am at the doctors now and I will be here the next 4-7 hours. I have an allergic reaction to the remicade so they pump me full of antihistamines and steroids.
I also had to take steroids for bronchitis last week and I feel swollen up like a puffy balloon.
The pain that mimics a heart attack started 3 days ago, so my body is ready for the infusion. I just wish I could get it without steroids. I would rather be fat with less pain than less fat with more pain. (Thin is something I don’t even worry about, not going to happen).
In a few days I will be back to hiking and Dancing that’s to Remicade and these nurses here taking care of me.
I have to write about my pain right in the heat of it, or I will forget about it when I am feeling good and never bother writing about it. Last night I had severe chest and jaw pain, which had been getting progressively worse for a few days. I took one aleve, than another a couple hours later but the pain stayed with me on and off until I went to bed. I had a rough nights sleep. My whole body seemed thrown suddenly from feeling really good into complete flare up. My flesh is so tender that the pressure of the mattress and the weight of the blanket was more than uncomfortable but so painful I couldn’t stay asleep for too long. I know this kind of pain can be greatly relieved by regular massage, and luckily I scheduled a visit to Massage Envy this morning.
On top of that pain I had a migraine. I need to start paying attention to see if I regularly get migraines after Aleve, although I am not sure I can stop taking Aleve for the chest pain if I do. I couldn’t find a quiet place to sleep in the house and someone’s computer was set to ping in a high pitch every time they got an email.
Maybe there is another reason I don’t blog about my pain very often, I feel like I just spent the last 10 minutes whining, when truly I am very fortunate. The Remicade seems to be working great, at least for about four weeks, and my home and career circumstances offer some flexibility and understanding with my health issues. But this is a blog I started specifically to deal with my health, help myself understand it and see patterns in it, and help others who may be going through similar struggles, so I can’t just avoid blogging on bad days. Plus is I don’t complain to everyone here (and allow everyone the option of ignoring it) I would probably whine the ear off of someone close to me who has already heard enough, so this is a safe place to vent.
Today I will try not to focus on my limitations, and try not to worry about the yoga classes and hikes I wanted to do but probably won’t be able to, and try to be gentle with myself and rest. Life is good, life is still good. The pain is like the tide, it will go out again too.
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.
I continue to recover from the surgery but today I was more achy and tired than usually am. I think I am not getting enough sleep but I have been stressed and also waking in pain so that isn’t helping. We have had a little life change here at my house, I took in a sweet girl that I met at the hospital, and she is struggling with her own health issues. I am now worrying about her health as well as mine, but we are only on this earth a short while and I feel we must do as much good as we can for as long as we are able.
I woke today feeling like every muscle in my body hurt, and my body hurt with the slightest touch, even laying or sitting down the pressure of what ever I was against was painful, it seems to be all just psoriatic arthritis. I have had low energy all day. Still only the smallest trace of a migraine. I was able to work a little bit on planning for a class when I get back to work, but I am afraid I wasted half the day staring at facebook screen and watching bits of the debate.
My son and now husband are both sick so I need to steer clear of both of them. I will cuddle up in a giant bean bag and sleep with the cat to avoid husband germs. That doesn’t sound so bad. The cat snores very quietly.
Tomorrow I go and get the stamples out…I will be so glad for that.
This blog has become more of a general health or shall I say illness blog. I suppose it’s a necessity as the main reasons for my blog are to increase my own self awareness and management and to communicate with others. By blogging I have realizes that psoriatic arthritis is just a portion of my health struggles.
I haven’t done my health journals in a few days as I am in the hospital. Sunday evening I started feeling pain at an event I was attending and brushed it off as the arthritis as I am in pain so often. It progressed through the night severe pain in my torso and eventually I went to the ER worried it could be my heart.
Instead I learned it was an infected gallblatter full of gallstones. They removed the gall blatter last night. It was stressful knowing that I had just had remicade the night before and surgury is discouraged within 6 weeks of Remicade due to risk of infection. I had no choice as my Gallbladder was already infected.
I will blog more on surgery and remicade later. Typing this with my phone. Right now I seem to be doing just fine. I am pretty sore and have a migraine but this hospital is probably the best I have stayed at.
There is so little info out there about slipping rib syndrome. As far as I know I have gone through the main treatment for it out there, Prolotherapy, where dozens of little saline injections are placed into the damaged joint, causing inflamation, which causes the body to focus on healing and rebuilding in this area. This really worked great for me. The problem is it worked to a limited degree. They won’t do the proceedure if you aren’t in pain at the time of the proceedure, and I had to make my appointments a month in advance. That worked wonderfully for me until prolotherapy actually started working. Then I would head out to my appointment two hours before and have no idea if I would be in pain by the time I got there. More than once I was turned away when I got there because I wasn’t in pain at the moment. I would say I am probably about 50% better, maybe being a little less generous than I should be, because I am in pain right now.
I go see a chiropractor (two actually) on a regular basis, but it would be impossible for me to go see one often enough to remain pain free from the dislocated ribs. I would love to have a chiropractic membership, like people have massage memberships or gym memberships, where I could just pay a flat monthly fee and just go as often as needed. I don’t know if such a thing exists but if it did it would probably not be in my price range. My insurance company will cover three visits a year. Ideally I would get three a week. Financially I am limited to one a month, two if I simply can’t stand the pain.
Slipping Rib Syndrome is basically an injury to the connective tissue, caused by trama to the area. The ribs slip out of joint fairly easily, and its common to have three ribs or more dislocated at one time. It hurts to move, stetch, sit still, lay down, eat, breathe. Right now my ribs have been dislocated for about 10 days and it hurts so badly I can’t sleep. For me, it was caused by a misdiagnosed life time chronic cough. It got very severe after having my son and I was treated for asthma for about 5 years while the cough just got worse. Turns out it was acid reflux, probably exasperated by my new diet and a sudden senditary lifestyle. The cough was so extreme I was embarrassed togo out, and it was increased by physical activity so I got even more sendiatry. The pain in my chest from the ribs dislocating was misdiagnoised as fibromyalgia, an easy diagnoises since I had other autoimmune symptoms and had not yet been diagnoised with the psoriatic arthritis.
I have tried glucosamine drinks and plenty of “miracle” drink cures, but I am open to other ideas. Maybe there are no other treatments, but in my quest for total health in my fight against the psoriatic arthritis, I would be remise if I didn’t try to fix all of the issues causing me health problems.