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.
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.
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…
Flare up is still going on, but once the Aleve kicked in I was able to move around just fine without the cane, except for when I tripped over it.
I know exactly what I need to get over this. A full day in bed. No pain killers or anything else can seem to get me over a flare up like a day in bed can. I try to schedule myself a day off of everything each week so that I know that day in bed is coming and that I will soon get better and not worse. That is not going to happen this week. Both my days off consist of PTA meetings and lots of running my son back and forth. Even if I can lay down for an hour here or there it would require me to mount the stairs more often than I probably can today.
On top of the flare up I have a migraine. My next “day off” is at least a week away, with plenty of obligations between now and then. It will be a relief to be done with the PTSA this year. Thank goodness we have such a good team at Warm Springs because I know I am not doing a great job as president this year. Between the Remicade and the Arthritis, Gallery and Migraines its just too much. I am glad I have done a fairly good job at stopping and passing up other volunteering opportunities. I have probably done more volunteer work than most people do in a life time, so I don’t need to feel bad about focusing on my own career and health at this point. The problem is, I won’t be able to focus on a thing if I don’t get my day in bed soon.
Today I hardly care that I have psoriatic arthritis. It hurts a bit, but its no big deal. Same thing with migraines…I woke today with a mild one, but still no big deal. Today I just want to feel better from my surgery. If feels like I have food poisoning and the flu on top of my pain from the actual surgery. My energy level which was up is today completely spent. I want to crawl into a dark hole and just breathe heavily and cry out in gasps, wimpers, and screams until the pain goes away. Tomorrow will be a better day.
A very bad, truly horrible, very good, wonderful day.
I had a migraine. All day. In the morning it was just yellow. I knew I had a meeting to get to right after lunch so I took some migraine aspirin. At 11 it was still there, and I added Alleve and ran to my meeting..an hour early. I came home and lay down for a little while, and almost was late for my actual meeting time. I got through the meeting..smiling even. I have quite an amazing team with PTA this year and they are so accommodating to other members and so respectful I am constantly inspired. By the time I walked in the door was miserable. Sent my husband to the pharmacy to pick up Maxalt. Sometimes my migraines are so bad I vomit and sometimes that feels like it relieves so pressure. Yesterday it just made the pain worse. I took the Maxalt, which is wonderful because it devolves under your tongue and you get it in your system right away which means your body can’t refuse it either.
Two hours later I am back at school for an association meeting. I probably shouldn’t have driven myself there. I was definitely in the red. Maxalt still hasn’t kicked in at all. I stopped and got Mc Donalds, both for the extra double size of ice tea caffeine and for my comfort food, french fries. I get to my meeting only to realize I don’t have my agenda. There are important things to cover and winging it without a migraine is bad enough. Amazingly we did it. The team I work with is just incredible. Everyone did their part and I think we pulled off the meeting only forgetting about one important thing. Then membership table and book fair. I stayed for both my shifts but there were several other women who stayed for their shifts and then others who not only did their shifts but helped others with theirs so moms could visit classes they may not have been able to. By the end of the night my migraine was calmed to a nice yellow.
The reason it was a great day is, with everything that had to be done I had a great group of women to work with, understanding and supportive and determined. And also I got through a red day when I absolutely had to leave the house. I now have a feeling of empowerment. I know now that a red day doesn’t always have to stop me.
Something to consider …I craved fat all night, mc donalds, pizza, cupcakes. I have always assumed when I felt bad I wanted comfort food which for me is buttery foods or deep fried, but I did feel better after eating this foods. I am going to look for a fat/migraine connection. Next time I get a bad migraine I am going to try eating an avocado or coconut oil or some sort of good fat and see if it helps at all.
Yesterday I had my second Remicade Infusion. They also gave me Phenergan and Benadryl to contract the itching reaction I get from the Remicade.
I arrived with a migraine, several days long of varying degrees at this point and it got worse as I sat there. They gave me the Phenergan and Beadryl about halfway through again and I passed out. They had to wake me when the treatment was over and I stayed groggy and cranky for hours. I also felt irrationally persecuted and victimized all day long, which is nothing like me at all. I looked up Phenergan and saw that does cause irrational moods, so I am blaming that. But it could also just be too many days with too much pain.
I also awoke at about 2 am with the same strong smell I had the day after Remicade last infusion. I got up and washed and within 15 minutes I could smell it again. I can’t seem to find anything on smell being a side effect for any of the medications they give me. I would love to hear from anyone else who has this side effect.