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?
If you know me you know I avoid as best I can prescription pain killers. It’s bad enough that I have my infusion and the Meds to counteract my reaction to it, I don’t need to put more ick into my body. I also just don’t like the way they feel. I lose ambition, feel loopy and slow and I am completely uninspired to do anything. I do however take more Aleve and Excedrine than anyone ought to.
I am having a bad flare up though. My chest pain has been so bad that it’s keep me from dancing and classes. and last night it kept me awake most the night. I found myself looking forward to my husbands 4 am alarm so I could turn on the tv for distraction. As is often the case secondary illnesses are also flaring up. Migraines, acid reflux, and allergies.
Days like this I long for those pain killers I so judiciously avoid. Or an IV of something that will just knock me out. But I know that they aren’t good for me in the long run and I need to look at the big picture. I am sure I will be dancing again soon enough, but for now forgive my laziness.
If you know anything about my pain scale you know feeling blue is about as good as it gets!! While I was in Florida I had a bad string of migraines but after they faded I have been on an upswing. I am without a doubt that the Remicade has changed my life for the better. I am still achy and limping for a couple hours in the morning and I still get occasional heart attack like chest pain and have rough days, but I am feeling better physically than I have in years. In early July I started Salsa dancing, and often just could manage part of the beginning lesson, but now I am taking several lessons a week and able to stay an hour or two for social dancing afterwards. I feel blessed with a new vitality. I am listening well to my body when it tells me to slow down and take a rest for an hour or two, and find that in return my days have many more hours in them and I can be more productive.
I just want to remind others with chronic illnesses to not give up. Keep trying things until something works for you. This blue period I am going through might not last forever but if it doesn’t it will serve to remind me to keep trying to live my life to the fullest and to find medical and health treatments that improve my life.
When I am feeling well I feel invincible. It’s hard for me to remember when my last flare up was, even if it was a week ago. Its hard to remember I can’t plan camping trips a month out with any definite confidence, or that I probably shouldn’t plan a road trip alone.
The flip side of that is when a flare up hits it hits hard, not just my body, but my confidence and spirit. It whammys my hopes and dreams and self confidence. When its hard to get through a quiet day, then there is no hope for visiting with friends in the evening, or even joining my family for dinner. I can go into a rather morbid depression if I don’t keep my mind busy.
The great thing is, when I am feeling well, I just don’t think about that much. Sure the fear of it creeps up on me all the time, but I can spend my healthy days smiling, and creating, and making big big plans, and getting as much work done as possible so when the illness does hit me hard, I won’t get too far behind.
Today is a good day. I am going to spend the rest of it acting like I have never been ill and will never be ill again. It’s not a bad way to live.
Looks like I am safely out of the flare up and just in time for a busy week. I have been waking up stiff and achy but no serious pain. I have been relatively active and busy not getting home until about 7 most days I think and I have still been able to make a quick meal before relaxing for the night. I have been regularly checking little things off my todo list which is always so satisfying wheit there are days I am too sick to do a thing. I feel I could manage a nice nature walk if I can only find the time.
In the last 6 months I have gone from chubby to downright fat, the evenings I spend visiting with family and watching tv. Yes I have food issues and yes I have illnesses, but in the past I have always been able to keep myself on the chubby side and avoid becoming obese. I can only manage weight with diet on a temporary basis, every “diet” becomes emotionally traumatic after any period of time. I have cut down on things like fried foods, empty calorie snacking, and cooking with a lot of butter, while at the same time not forbidding myself any of those things. I keep thinking I should join a gym again…or what I really want is a jawbone pedometer that will keep track of my steps with an app. It will also count calories.
I want the jawbone as if all I need is incentive and I will start walking laps around the neighborhood. I want it as if all I need is little hints to suddenly have a “healthy” life style. Hey, maybe I will even get some little dumbbells to wrap my aching fingers around and swing back and forth while I walk. Everyone walks…walking is easy! I know if I could just find the energy to get down to Best Buy and buy the little jawbone I will suddenly have limitless energy. In my head its my magic little pill to a slim body, to endless energy…to not feeling like my legs are being smashed with hammers with each step I take. I have a friend who on her day off spends the day cooking for the whole week. I might do that too if I can find a day off besides the one I spend in bed. Maybe not a weeks worth of cooking, but a big pot of greens and a pan of fried rice might get me through the days I grab fast food on the way to work because I woke up already with limited energy. I am sure there are things I can do that are reasonable. Instead I crave a little black bracelet that will constantly be reminding me of how lazy and weak I am. Days like today I should focus on being grateful I can walk. But since I can’t spend the day in bed anyways if I can find the strength and energy to drive to Best Buy and walk into the store..I might have to get myself a Jawbone, so I can start feeling like I am on the road to health again..instead of this road…
After meeting with my doctor last week I learned that there is one other injection that I can take but it isn’t as strong or have the success rate that Remicade has. However the doctor mentioned that some medications work better than others for certain people and you don’t know for certain until you try it. I mentioned I don’t like the idea of taking steroids on a regular basis. He increased the anti histamine drugs in my premed and suggested I take a otc allergy med daily for a week and then as needed. I went home and to bed and slept for about 24 hours I think. I didn’t wind up taking the daily allergy med as this time it didn’t get any worse than a mild itch. He did say the itching that occurred even a month later was due to the medication in my system still. The itch seems to act up when I just wear myself out and I hadn’t been sleeping well at the time.
My migraines haven’t seemed as often or severe, but of course I happen to have one today. I guess I am lucky, I don’t have to work today.
I am glad I don’t have to give up the Remicade at this point. It really seems to be helping me live a full functional life with only a moderate amount of pain for most the day.
Other health news is my primary doctor has put me back on daily Prilosec saying that the depletion of calcium is much less dangerous than esophageal cancer, which is a danger with long term chronic acid reflux.