My health has continued to improve throughout the year. It turns out about 85% of my GI issues were due to the reaction of the Methotrexate I was taking for the PsA. After about a year of tests and diets, etc, it was great to finally have an answer and a solution.
When I stopped taking the Methatrexate my inflammation from the PsA got worse. My skin, my chest, fingers and feet are all flared up. So instead of going back on Methatrexate (NOT GOING TO HAPPEN), my doctor has increased my Remicade dose. Not sure if it’s helping yet.
I also stopped taking the antidepressants the neurologist gave me for migraines, and the other medicine I was on for years that wasn’t helping. With he anti-depressants I wasn’t feeling like me, and I wasn’t painting much. Both are deal breakers, I would rather have the pain than not be me. Oddly I seem to be having LESS migraines since stopping those meds. I have recently started B12 and C0-Q 10 recommended by my doctor to help minimize them.
Bad chest cold kept me down for about 6 weeks, but finally I think the cough is fading and I am ready to get out dancing again. My health keeps improving and I am on less medication than I have been on in decades. I am feeling happy too. I just need to get my muse back, I can live with this much pain.
Filed under Chronic Pain, Daily Journal, exercising with illness, Health, Infusions, Migraines, Pain, PsA, Psoriatic Arthritis, Remicade, Side effects, Uncategorized
Wee hours of the morning I woke my husband to get me migraine Meds. The sound or my own breathing was painful. Infact just the air pressure on my ears sounded like screaming. By 4 am I was wide awake and still in miserable pain. I could hear my pulse so loud in my head. It didn’t take long to realize it was irregular. Thuda, thuda, thu —–(4 second pause). I don’t know if the odd pulse was causing the migraine or the other way around. But the noise of it was driving me crazy. Then I remembered what my musical friend Carlos said to me about static over a loud speaker at a restaurant. He said think of it as music. Then I started to think of Don Baarns Musicality lessons. Soon I was counting the heart beats like music one and two and three, pause, pause, pause, pause. Before too long I was doing preps and double pirouettes in my head. Dancing to the rhythm of the pain. It was calming. I hope when it’s time for me to leave this plane I can let go of fear and just let my imagination dance to the rhythm of goodbye.
I have a brand new symptom and I don’t like it one bit. I don’t know if its my psoriatic arthritis or a side effect of the remicade or mysterious new ailment.
It feels like some is stabbing me with a sword up through my shin bone. It started last week with shooting pains through my wrists but the pain is intensifying and over a larger area now. It’s enough to make me drop what I am doing and scream. But then I goes away, after a very long few minutes. And I am ok, except for all the other things causing me pain.
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.
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…
I had a doctors appointment Monday and the doctor recommended that we move the Remicade to every 6 weeks instead of every 8 weeks. Its a hassle because not only do I have to sit there for hours, but its hours away. Plus I fall asleep for about 24 hours after, and am rather out of it in a druggy haze for a couple of days. The worst part is since the premeds knock me out so hard there is no way I can drive myself. So I need to ask someone else to spend an entire day driving me around, and waiting for hours at the local Starbucks.
But if I am going to go through the hassle and side effects of this medication, I certainly want it to work. So I agreed with minimum complaining. I did feel so good after the last Remicade infusion, and the more often I have it, the more likely I am to have days like that.
I have pretty good insurance, but my doctor says the reason I have to drive all the way to Redlands is because no place closer to me will take Regal Health Care. His Corona office IS a cancer center and does chemotherapy off all sorts but Regal doesn’t pay them enough for them to accept it. I guess I am lucky there is someplace I can get the medication, and with a reasonable co-pay. If I had no insurance I can’t imagine the pain I would be in daily.
After a few days of feeling recovered from my surgery and not feeling too bad other wise I woke up yesterday morning feeling tired but ready for my full day at Robert Burridge’s workshop. So focus on the workshop I don’t recall feeling tired or achy, although after about 1 pm, I started getting really clumsy. I kept tripping on nothing, and even falling down here and there, dropping paint brushes and other things. By the time four o’clock came around I was shaky and oh so tired. Driving home I realized how much my body was aching head to toe. When I was a few miles from home I just felt like giving up. I felt like pulling over on the side of the road and crying. It was effort to keep my focus on the road and keep my hands working on the steering wheel.
When I got home I knew I had work to do and no energy left to do it with. I felt that if I laid down for a moment that would be it and I wouldn’t get back up, at least for the night. So I rallied my energy and strength and worked as hard as I could to finish packing my work bag for tonight, as well as some additional stuff for Burridges workshop. Luckily Tim came home and finished the packing for me and loaded the car. By that time I couldn’t make it upstairs myself and actually needed help getting into bed. I can’t remember the last time my psoriatic arthritis hurt so badly. I took some medication and got a massage, and just lay there half asleep for a couple of hours. My family all then joined me for dinner in bed, which was a real sweet gesture. I feel asleep shortly after dinner and woke up with a migraine but feeling a world better.
Today is going to be busier than yesterday, I will be leaving the workshop early to go teach my own art classes. I must remember to drink plenty of coffee today to assist the adrenaline I will have from the excitement of seeing some of my favorite little ones in class today.
It will be a hard busy week physically, but I am sure once I get through it, it will be great for my spirit, knowing I can do what feels to be absolutely impossible; And yet, its less than most people do everyday. Its very clear to me that if I had to depend on my own income I wouldn’t have the luxury of working part time, nor the health for a full time job, but I would be one of those people some of my friends look down on, who must live on a monthly disability welfare payment. I would say to those people who judge others as weak or lazy or parasites that it is hard enough to live a life with a chronic illness but being judged by others can increase the depression and feelings of worthlessness and shame that we always deal with daily.