Monthly Archives: November 2012

Daily Health Journal Day 26

I have been to busy to blog lately, which is amazing.  I haven’t been able to work this hard for years.  I feel like I am working most days from sun up to sun down, and falling asleep worn but exhuasted.  I am opening an artist owned art gallery and my partner and I are doing the bulk of the work alone with help from good friends.  

I expected to be a casual bystander with the work, because 15 minute of labor might put me in bed for the day, but instead I have been able to paint and patch and scrub all day long.  Of course I hurt all day and take a dozen breaks but its amazing to me that I am able to do it at all.

I can say for certain that I believe the Remicade is working for me.  Its not making me pain free by any means but the pain level has gone down enough that I can get through the day with moderate aches and pains, limping, massages and pain rubs and over the counter pain relief. 

It feels so good to fall asleep at 8 pm, but to know I earned that sleep by working hard, and that despite the pain I was able to do it.  This is not something I could have managed a few months ago.  Not for two days in a row at least.

Its also been a week since I had a migraine, which is unheard of for me.

Hooray!

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Daily Health Journal- Nov. 20th, 2012

Anyone who follows my blog knows I have been horrible lately with updating it.  Its been at least a week since I wrote my last post.

I had my Remicade infusion last week and the premeds didn’t bother me as much as usual.  I was only half as cranky afterwords and the next day I was getting around running errands rather than sleeping all day.

I have been feeling well enough to do some mild manual labor at the new gallery each day, running errands and such.  So busy I don’t stop until my body forces me to at about 7 pm at night.  I start slowly every day, sometimes not getting dressed and leaving the house until after 11.

Today my body hurts really bad, probably over doing it a bit, but so glad to have a little energy each day.

Too much to do today to sit and complain, so off I go!

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Filed under Chronic Pain, Infusions, premeds, Psoriatic Arthritis, Remicade

daily health journal- Nov. 10

Woke up with my body hurting so hard it was hard to move.  11 am and my little migraine is threatening to become full blown, and I want to crawl into bed for the rest of the day and pull the covers over my head.  But there is too much to get done.  I will do some work that doesn’t require thinking.  I hope to get some painting done at the studio…wall painting…not art painting.

Remicade happens next Thurday and I am looking forward to it for the first time.  I want to feel better.

 

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Filed under Chronic Pain, Daily Journal, Migraines, Remicade

Daily Journal- Nov. 5

Really bad migraine today.  Tried to lay in the quiet dark but it just made me dwell on the pain.  Also achy and think I have an infection starting, which tends to happen a lot with the arthritis meds.  Doctors appointment today that I will get a ride to so they can give me a migraine shot.  Yesterday I was also fighting a bad migraine but its even worse today.  Took Maxalt and Excedrine.

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Remicade dosing

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.

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Filed under Daily Journal, exercising with illness, Pain, Psoriatic Arthritis, Remicade

Daily Health Journal- Nov. 3rd

The last couple of days my body has hurt from the time I wake until the time I have gone to bed.  If I were less determined I would have stayed in bed all day, as it was I moved slowly, and didn’t get a whole lot accomplished, but I got enough little things done that I feel like I am living.  Sometimes one 20 minute run to the grocery store, or making a 20 minute dinner can be enough to make me feel worthwhile.

This morning I woke feeling achy but good.  My joints ached, my right arm especially.  My muscles hurt but moderately, not like I had been hit by a truck.  I woke feeling yellow and after days and days of orange, yellow feels good.  I started the day with 5 minutes of Stretching with Esmond, which is more exercise than I have had in over a month.  Today I go to the studio to start cleaning up the wreck it is now.  I really don’t think I will be much help, but I want to be there.  I need to not be to ambitious feeling so good.  Sledge hammering walls today won’t make me feel very good tomorrow.

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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