Tag Archives: art

Spring flare up

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.

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Filed under Chronic Pain, depression, exercising with illness, exhuastion, Health, Migraines, Psoriatic Arthritis, Remicade

Daily Health Journal- Nov. 1, 2012

Yesterday was a big day for me.  I stayed home resting until about one then ran a couple of errand before class.  By the time my kids arrived for class I was energized.  I am so fortunate to have a job that I can plan my energy around and that I get so excited about that my body always seems to rally itself without fail.  I managed wonderfully all through class and didn’t even feel a bit of pain or tiredness until I was cleaning up.  By the time I got home I was exhausted and limping, which often happens, but feeling satisfied at another few hours spent changing the world in tiny ways.  Normally I would have limped up to bed and dinner would have magically appeared but that was not an option last night.  Last night was Halloeen.  On Halloween we have a family tradition of hosting a party for friends, neighbors and family in our driveway.

I pulled up and was delighted to find my husband and son had already decorated, got out the bbq, and tables, and had the whole thing ready to go.  My husband had even set up a candy passing out area for me, so I could feel like I was helping and not do too much.   It was  so great to see old friends that I hadn’t seen in way too long drop in.  My grandmother and Dad and Janet had adorable costumes, and my son’s band played to a crowd of teenagers and mothers.  I got to see my favorite little babies, and held them inspite of the pain my body was in.  I often felt like crying my body hurt so badly, but I experience pain all the time, and if I went and laid down the pain would continue, so I tried not to do too much, but enjoy the gift of friendship and love that surrounded me.  Too often I stay home because of pain, thinking if I drop in for a just a little, and am subdued because of pain, that I will just ruin the party.  Last night taught me that pain or not, my loved ones are happy to see me, and even those who have known me a long time, are perfectly fine that I am not the life the party.

For a while now I have not been able to hike and workout and my body, which was on the chubby side to begin with is certainly showing it.  I miss my outings with nature.  I miss my clothes fitting.  I miss not being able to do as much volunteer as I used to do.

Yet right now I am excited about the things I can do and the oppurtunity I have.  I have  a job that only requires short bursts of energy that I can plan for in advance, that in some way or the other touches my heart each day I am there.  I have family and friends that love and support me, no matter if I am healthy or not.  I have a rare golden oppurtunity right now of opening an art studio/gallery with my partner in an artsy town, that we will be making as comfortable as possible with my illness in mind, so that being in the studio won’t be any harder on my body than being at home.  Comeplete with a sofa and blankets in back, so if I get really bad I just need to close the doors and turn off the lights and get some rest.

Right now my body feels like it has been hit by a truck.  It hurts no matter how I move it or not move it.  But my heart and head is filled with love, satisfaction and the glow of oppurtunity, knowing that this life is worth living, no matter what my limitations and pain intensity.

 

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Filed under Chronic Pain, Daily Journal, exhuastion, Health, Psoriatic Arthritis

Daily Health Journal- Oct. 31

Well I won’t be able to call this a daily health journal if I don’t start writing in it more.  Just by the time I get done with running my errands and taking care of my responsibilities I go to lay down and once I lay down for the evening I don’t move again until morning.

It’s 3 am and I am up with acid reflux.  I don’t know how someone with acid reflux as bad is mine forgets they can’t eat pizza, but I ate it.  I suppose its better than being up with a migraine or other pain.

Monday I had Steve Ito work on my shoulder again and it hasn’t bothered me since.  He also worked on my migraines again and my morning migraine wasn’t  there when I woke on Tuesday.

I also saw Dr. Le about the Remicade and Psoriatic Arthritis on Monday.  I was hesitant to have the Remicade every 6 weeks instead of 8 but the pain does come rushing back after just a couple of weeks and I want to get the most benefit I can from the Remicade so I am following his advice and getting the infusions every 6 weeks instead of 8.  Its a hassle since I can’t drive myself and its so far away.  It means someone’s whole day is taken just driving me there and back and waiting for me while I have the infusion. Dr. Le told me about a law called the Family Leave Act, where an employer must give a family member time off to get necessary care.  My husband does get family medical leave but its really good to know about this law and I am sure it can help others if I don’t need it.  Basically a doctor would just need to fill out forms that any HR department would have.  Still I know I am out of service for a couple of days after the Remicade, and that I am asking someone else to take a whole day for me, made me hesitant about agreeing to the more frequent infusion.  But it really does seem to be working, and I so much want to live a normal pain free life.

I have read that the Remicade is a chemotherapy, and I know its not as brutal as cancer chemo, but it was still a little shock to see it in writing on some paperwork the office gave me.  I guess if it works they can call it whatever they like.

Some wonderful news is a friend is going to be sharing a little art studio/gallery space with me.  It’s going to be something that will work around my illness, we will but a heater in, and a sofa with lots of little throw blankets so I can be comfortable when there.  It will also have tons of flexibility so I won’t need to go in at all on bad days.

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Filed under Chronic Pain, Daily Journal, exhuastion, Infusions, Migraines, Psoriatic Arthritis, Remicade

Daily Health Journal- Oct. 19

I woke with a migraine, it was fairly bad, it hung around most the day, even with meds and trying to paint it out.  Exhausted but maybe thats just from the pain.  Arthritis wasn’t too bad today, maybe greenish yellow on the pain scale.

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Filed under Daily Journal, Migraines, Psoriatic Arthritis

Daily Health Journal- 9/25

I have been five days away from my Journal; four at an art show and one day recouperating.  This weekend my health was remarkable.  I think I have finally reach an end of that what seemed to be a nearly month long migraine.  I had a couple mind migraines through the weekend and one really annoying one most the day on Saturday but it was my first weekend in a long time where I spent more time without migraine than with.

I had hours on hours of crystal blue levels of pain, or no pain in this case, to match the blue of the sky and ocean.  My cheap motel room was up a step hill with several flights of stairs to drag myself up and down a few times a day, which gave me quite a workout.  Every evening after the show I felt like crawling into a cave and sleeping forever, but my business partner gave me a nightly foot massage and after that and a cool shower (it was hot and sticky in Catalina) I was able to make it down the stairs again every evening with just about enough energy to walk to dinner and back.  By 3 oclock daily I was exhausted, and my 6 could hardly move, but it certainly beat waking up that way!  Maybe it was the clean air doing me well, or maybe the Remicade is working, or maybe just my body being able to fight my illness because it wasn’t having to deal with the migraine.

I did look longingly at  the night club as I walked by at 8:30 knowing there was no way I could actually dance, or even be up by the time it opened its doors, but I did plenty of walking, made new friends, and generally had a great working vacation.  The art show was a success and I am already excited about next year.  My partner and I are considering doing less markets and more art shows to better focus my limited energy.  I also have vowed to do less volunteer work, limiting my work load to the middle school PTA, and after the year finishes not signing up for another year.  I have limited energy and need to respect that.  I need to put time and energy into my art, and refocus there.  Last year I did far too much volunteer work and far too little of my own art work.  I am also going to be taking on more community art classes so will need some of my reserved energy for that.    Being selfish about my energy always felt like a horrible thing to do, but now I realize its is the only way to realize my dreams and it sounds down right liberating.

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Filed under Chronic Pain, Daily Journal, exhuastion, Infusions, Migraines, Psoriatic Arthritis, Remicade

Day Health Plan- Day 24

Yesterday I woke still groggy from the medications.  The fogginess lasted most the day and even though it was an art market day I slept a lot.  Fell asleep on my makeshift curb bed behind our the table, and it the car both ways. I had two less severe ice pick headaches first thing thing the morning. The great news, my migraine is gone!  Pain stayed green and blue all day and I woke this morning with zero migraine.  The pain I had was a bit of arthritis and a regular non migraine headache from the heat.  It was 103 all day and I managed not to get heat stroke thanks to my business partner taking care that I didn’t over extend myself.

This morning my head is blue (no migraine or headache) and the rest of my body is green ( mild morning arthritis aches that are typical).  I have a lot tol do to get ready for the Catalina Art Festival and I feel like I have exactly the health, energy, and help I need to get it done.  It’s going to be a great day.

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Filed under Chronic Pain, Daily Journal, exhuastion, Ice pick headaches, Migraines, Psoriatic Arthritis

Brian Nelson- the story of another artist with PsA

Brian Nelson.

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Filed under PsA, soul