After a pretty rough flare up a couple of weeks ago, I have had relative good health. Very few migraines, and having a decent amount of energy through out the day. There have been several days I have been unable to walk unassisted in the evenings but those days have been busy days, and the inability to walk seems a lot worse if I am required to sit on benches or uncomfortable seating for some period of time. Even if I attend a movie I tend to limp and creep afterwards, so hard benches after a long day make me nearly immobile. These last couple of weeks, which I consider good, start off with achiness where my whole body feels as if I have been in a car accident and every movement hurts, but after about two hours the pain is faded and I am able to get around just fine, and I can easily forget about the pain. I can then run around doing errands and chores just like anyone else, but I take care to moderate myself so I don’t get worn out. Lately I have been able to make dinner in the evening, usually with some help, but that is huge for me. It feels so much better than climbing into bed at 4 pm and needing someone else to bring me dinner. Going dancing in the evening is still beyond my reach and I try not to plan anything I wouldn’t want to back out of in the evenings, but still life has been great. Thank you life.
Monthly Archives: April 2013
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.
The title of this is a quote from Kermit the frog…and I totally disagree. I LOVE being green. Blue feels like a pipe dream, but there are days where green overrides all else. After a week of having high pain levels, I am so pleased to report a near perfect day yesterday. (if you don’t know what I mean by being green, its that I rate my pain from blue to purple, where blue is no pain and purple is just kill me now pain. The last week I was hanging around orange and red all week).
Yesterday when I woke I didn’t even limp when I woke. There was no pain from lifting what was a heavy toothbrush the day before. I had planned a short trip to nature that morning, just feet in the ocean, because I am a firm believer that nature heals and I had been away from nature far too long. We only had a few hours before work to drive to the ocean, and then swing by Leucadia’s farmers markets for some of our favorite healthy treats and to see a couple of friends we were missing. On the way there I saw a bridge surrounded overgrowth of trees and I just had to stop. I have a love for cement and architecture and to see it just standing in the middle of an elven forest was amazing. We walked out on the bridge and watched the swallows and other birds. I felt well enough that if we had planned the time I would have gone on a little hike. I made it full circle around the market without needed an arm to lean on and was still feeling green by the time I got to work. During the day I had a few spikes to yellow, but I just sat by the heater or curled up on the sofa when that happened and they passed without having to take any medicine. We stayed open late to work on some organizing and by the time I got home at about 7 I was actually able to cook up the exotic mushrooms we found at the farmers market. I woke today stiff and shuffling like an old lady, but not with a lot of pain, and now just 30 minutes later I am back to green. Of course now I have all these big plans for what I can do this week, and the first will be to see my dear grandma because thats the one thing I wouldn’t want to miss if the flare up comes rushing back. It’s so easy being green.
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…
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.
Yesterday I woke with a migraine,and a arthritis flare up with lots of trouble walking. I went to a small antique market with Randal and Tim before work, then a limp around the farmers market. We then spent the day cleaning, and hanging and prepping for the reception and I tried to sit down when possible, but it wasn’t always possible, since things had to get done. I took a Maxalt, an Aleve, and then later another, and a couple of excedrine migraine, and by afternoon I was perfectly functional and fine. The reception was directly after work and I had good energy all evening, and was able to stay on my feet most the time. By 8 pm I was pretty sore and back to limping, and just wanted to crawl into bed. I didn’t even want to walk out to the car. On the way home we hit traffic from an over turned semi and were delayed at least an hour. The guys were warm, so the windows and sun roof were open and I was absolutely freezing in the back seat. Cold is one thing but when I am in pain, cold just registers as pain, and by the time I got home I couldn’t walk on my own. I fell asleep to a massage and woke several times in the night with cramps and spasms of pain. Today I am walking with a cane for the first time in years. I took an Aleve and I am sure I will be sticking the cane in some corner in an hour or two and not need it for a few more years. That’s the plan! I have a workshop to teach in three hours…so I hope my body listens to said plan!