The Remicade still seems to be working great, as far as I can tell. I have had my physical adventures seriously limited due to breathing issues, so really I don’t over tax the arthritis much.
One thing I have notice is waking three or so times each night with crushing pain in my hands. Like my hands just had a semi truck fall out of a sky and land on them. This has been happening every night for over a week. The strange thing is my hands seem ok during the day. Has anyone else with PSA had this problem? Maybe its the fact that they are not moving for a period of time, because during the day my hands are always moving. Its a new symptom, like the others I can live with it, just curioous if there might be somthing I can do.
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 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.
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.
Well it seems like the remicade is working, but I have been having such a flare up its leaving me a bit beat up and depressed. I am dreaming of the days I used to hike a few times a week. Just small hikes, under three miles all, but manageable, even on pain days. These days, driving to work, and walking out the door seem almost more pain wise than a person should be able to handle. At the same time the migraines are also hitting me nearly daily again, giving more credence to the theory that they are both related.
I know my weight isn’t helping the pain, no one in pain needs to carry around an extra 50 lbs, but pain doesn’t help me manage a compulsive eating disorder either. It was easy to hide an eating disorder when my days consisted of 5 to 7 hours of physical activity every day, but now when getting dressed in the morning takes half my energy for the day, exercise seems like a luxury I may never have again. I actually feel like I am mostly in control of the eating issues lately, as many meals out I split, and I have mostly avoided mindless empty calorie snacking, and make better dietary choices for the most part. I bring up the eating disorder because I know I am at risk from just moving from one to the other. When I see myself in the mirror lately, my first thought is I have to start purging. How else can I get this weight off? I have tried expensive diet plans in the past, and just self control and they just leave me depressed and any weight I lose gets put right back on as soon as I have to take steroids. The dietary lifestyle choices I have made obviously aren’t enough. I know bulimia isn’t an answer to anything, but its something I have struggled on and off with when I get very stressed out in the past. Maybe its just a way to have control somehow over something. Amazingly enough I seem to have lost my appetite for the first time in my life these past few days, so maybe that will all take care of itself with some luck.
I have been trying to manage the pain and depression productively. Painting it out like I do migraines, and oddly enough losing myself in data entry with the books for work seems to give me someplace to focus except for the pain. I have been taking Aleve daily, and I am grateful my doctor doesn’t through pain pills at the arthritis because I would be tempted to numb my mind and take them. I have some friends who smoke or eat pot for pain who have been trying to convince me. But I don’t think I can every get over my issues with pot. I have seen it ruin too many peoples lives and destroy all their ambition. I know taking it for pain is different,and I am all for legalizing it for any purpose, but I have have a repulsion towards it I don’t think I can get over.
On the plus side my paintings have taken a more creative expressive turn. Are they any good? It’s nearly impossible for an artist to see these things objectively, especially when they are new borns. But they are good for me, pure expression and something to focus on besides pain.
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…
Anyone who follows my blog knows I have been horrible lately with updating it. Its been at least a week since I wrote my last post.
I had my Remicade infusion last week and the premeds didn’t bother me as much as usual. I was only half as cranky afterwords and the next day I was getting around running errands rather than sleeping all day.
I have been feeling well enough to do some mild manual labor at the new gallery each day, running errands and such. So busy I don’t stop until my body forces me to at about 7 pm at night. I start slowly every day, sometimes not getting dressed and leaving the house until after 11.
Today my body hurts really bad, probably over doing it a bit, but so glad to have a little energy each day.
Too much to do today to sit and complain, so off I go!