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
I saw the chiropractor Wednesday and the adjustment was painful. He said the ribs were out pretty badly and the adjustment might not hold. By that PM I was pretty sure they hadn’t. Thursday I took two Alleve and made it to my sons concert and was even able to get through my dance class in the evening. My hopes were that the adjustment was just so hard on my body that I was still in a lot of pain from that. This morning my body insists I stop lying to myself. The pain is intense. I will make an appointment as soon as its a decent hour. In better news my now 6 day migraine much milder in intensity
. Even with the ribs my health seems finally on a little upswing.
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.
Woke with a migraine but gone on it quickly and within two hours was able to manage a drive to the San Diego Airport. The rough part was the excruciating pain in my teeth and jaw. I took an alleve on top of the excedrine I had already taken. Half way to the airport I took another. If feels like someone has taken a railroad nail and nailed it into my jaw. The pain is spreading all the way to the back of my head. I am glad I get to be a passenger on the way home. If I felt any better I might be able to feel sorry for myself but the pain isn’t letting me focus on anything but pain.
Well I have been through some stressful times since I last wrote but oddly enough even through those times my health has been on an upswing. Last month I took myself on a mind healing road trip to another state and my body didn’t rebel. It fact it seemed to flourish in the desert heat and I found lots of quiet time without daily distractions and finished my two best paintings to date. I also have started dancing again. I was unable to find swing locally so I have taken up Salsa and dance on the nights I am feeling my best. Often a night out dancing means I go for an 8 pm class and am home in bed by 9:30 but it feels so good to go out and be active and even make new friends. As I am feeling better and have some free time on my hands I have been spending more time with a friend who isn’t doing as well and that has been so emotionally healing for both of us that I don’t know how we managed without it. Those moments are also physically healing because we often watch TV together which gives me the down time I am often so reluctant to allow myself although I desperately need hours of it all day to avoid severe flare ups. I just wanted to blog to say I am feeling good. Living with Psa doesn’t have to mean not having a life. This week I am in Florida and is very wet here. Historically my body tends to hate the damp so wish me luck.
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.