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 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.
I have found some things that help with migraines and I haven’t mentioned them here because they are just not things I am comfortable talking about. But if I can help one person have one less migraine it really feels like I should, despite my discomfort.
I can’t imagine there is anyone who knows migraines more intimately. I have had migraines that last four weeks without a break, ones that leave me laying on cold tile for days not being able to function at all, more commonly weeks, that turn into years where I have 3-5 migraines, with meds that work part way or temporarily, so I can function some but am just miserable while I function.
I have actually found something that works for me, or at least I think it does, its only been a couple of months, but so far great results. Its called CBD pills. Its a form of medical marijuana that doesn’t have any THC in it so it doesn’t get you high. This is important to me as people in my family have problems throwing their life way and I have always blamed the pot and I have very negative ideas about pot, so I personally would never want to smoke it. Its also important because I hate to be out of control of my body, my illness makes me out of control enough, so the idea of my mind or body out of control intentionally doesn’t sound like fun. I took the pills for a month, and within a week I went to just one migraine a week and a rather mild one. After the first month it went to less than a migraine a week and I went two months without any severe migraines. That hasn’t happened in well over a decade. Then I ran out of money and couldn’t afford the pills for a week (they are pricey at over $10 a pill that needs to be taken daily). I wound up with a four day migraine, that was responsive to medication but only for a few hours at a time. I know that isn’t enough time to conduct a scientific study but it certainly looks like its working to me. The doctor who prescribed it to me says its a preventative medication and doesn’t work for a current migraine but taken every night will lesson the occurrence of migraines. According to him you can take it any way so if you don’t mind the effects of marijuana or if you go to sleep right after you take it you can choose to take another form. I have also started using Indicream, which is a cream with medical marijuana in it, either with or without the thc, topically for my arthritis with good results.
I would be remiss if I didn’t mention another migraine treatment that I found over the year that helps. I found this out from my 90 year old great aunt of all people. This is often just temporary relieve, but when you are feeling miserable temporary is good enough. I am sure that I don’t need to go into this in detail, (or at least I hope I don’t) but its an orgasm. I know you don’t want to have sex when in a lot of pain so go ahead and just make it about the orgasm and pain relief.
(thank you Chris, for encouraging me to share with your post)
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…
Tuesday I stayed in bed until late afternoon with a migraine. Took Maxalt, Excedrine Migraine, and topped it off with an almost illegal amount of caffeine. Since then I have been drinking a mild but constant amount of caffeine to keep it at bay. It started to hit hard about bedtime last night, and by almost 3 am I was wandering the house for a quiet place to sleep, and wound up with the pain keeping me awake anyways. I try not to take meds or caffeine at night because they both tend to keep me awake, but after an hour I took a Maxalt anyways.
I have read that many women stop getting their migraines during or after menopause. That will give me a hopeful reason to not mind the early signs of it I have been experiencing the last few months. I would rather be awaken by night sweats than stabbing pain any day. My great aunt though, who is 90 I believe, still suffers almost daily migraines to this day. I am sure she wishes menopause had taken care of her migraines.
Still it seems I have less these days. There is a chance the migraines are made worse by the arthritis, and in that case the Remicade could be helping.
Some non-medical things I have found to help migraines if they aren’t full blown red yet…eating, coffee, distractions such as some boring tv show on low, (I think the low sound helps keep other sounds like my own breathing, or the dog walking down the hall from making me want to hurt someone), and forgive me for saying so grandma, but it might help someone else, orgasms. (thanks cousins for sharing that family secret with me) IF they are fullblown, completely silence and darkness are about all I can survive. My house being almost always bustling, I find many of those things rare if not impossible, as alone time is at a premium, and quiet is not something that happens, but I almost always have someone who will bring me a cup of coffee in bed and who will turn off sesame street for me when I fall asleep to it.
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.