Tag Archives: fatigue

Remicade Reactions

Well the great news is Remicade seems to be working for me.  I am working my part time teaching job, and also running the gallery, which occasionally requires that I am moving earlier than my body wants me to, and up later than I normally would be.  To be fair they aren’t on my feet 8 hour a day jobs.  The teaching job is hectic and crazy but so much fun, and I can manage it because I never work more than three hour stretches, and I am hit with severe fatigue and often pain right after, I go right home to bed afterwards.  At the gallery if I am feeling bad then the worst part is driving there, then I can sit in a chair and work on some project, cuddled close to the heater.  If its brutal cold I just can’t manage there at all though.  Before the remicade my days were less productive and my pain was much more often at unbearable levels.  My energy is up, although I still feel like a big of a slow moving but determined slug.  I can tell when its getting close to Remicade time.  My body starts hurting more, and my migraines get very intense.

The bad news is my allergic reaction to Remicade that they have been managing with the pre-meds.  If I don’t have premeds half way through the infusion I get a severe itch.  Not just a normal itch.  The kind of itch where you can’t think of anything but the itch.  Where ever part of your body itches.  Even things like eyes, and inside parts.  6 weeks ago I got the premeds but woke later in the day with more itching.  I just took over the counter antihistamines and the itch didn’t go away but it became bearable.  This last infusion I got my premeds, and fell immediately asleep.  I woke two hours later with a mean case of itches, my arm also had a huge hot pink rash, at the injection site that went from wrist to elbow, they quickly took my temperature and realized I had one.  They gave me another dose of the anti allergy cocktail and told me that I was maxed out.  They slowed down the infusion and waited for most of the symptoms to subside and sent me home.  At about midnight I woke up with the horrible itches.  The question is can I stand the itches?  Possibly.  But also the side effects seem to be escalating.  Its two days later, and all that there is left is a mild, irritating itch, but I can handle this.  My doctor did offer steroids.  It was unclear from the phone message if it was meant for just this time or for every time after the Remicade.  I haven’t called back because I really don’t want steroids.  Every time I take them I put on 15 lbs and that weight never seems to go away but just add up.  I can’t do that every six weeks or I will be dead soon. My body already feels huge and sluggish for me, and I just don’t have the energy for even mild exercise at this point with all the rest I am doing.

I am going to attempt to go to work today.  I have a very busy week this week, the gallery is open, there is an exhibit I must be a good neighbor and attend, there is a small, I want to take care of a friend in mourning, and I have my kids classes to prepare for.  I have a class in San Marcos starting next week.  I am a bit nervous as it starts about the time I go to bed, its a longer drive than I am used to making lately, and I will probably be in a lot of pain before the class even starts for the day.  If I had less going on this week or more energy lately I would feel better about it.  The good news that I have to remember is that no matter how bad I feel, I always seem to be able to pull it together for a few hours for the kids.  The work is so rewarding that it doesn’t matter how badly I feel beat up after.  Its awesome.  So pain..yep..but not as bad…energy…yes..just enough to do what I have to do…and the life…well life is awesome…life is worth living, every day.

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Filed under Chronic Pain, Infusions, Migraines, Remicade

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. 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. 24, 2012

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.

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Filed under Chronic Pain, Daily Journal, exhuastion, Migraines, Pain, PsA, Psoriatic Arthritis

Daily Health Journal- Oct. 18

This morning I went to the doctors to get the staples out after my gallbladder surgery.  My hips hurt from arthritis enough that I was limping, but I was able to sweep the downstairs before having a PTA member come over to do some paperwork.

By 3 pm I was laying down and am tired but not feeling horrible.  Every day I get out of bed and dressed is better than doing neither of those things.

I find it interesting that my arthritis didn’t bother me in the hospital or the first week after the infusion or most of my recovery very much.  Maybe it works better right after the infusion then fades as time goes by.  Hope this is a good sign for the Remicade.  And I am so lucky, made it through surgery, and recover with no infections!

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Filed under Psoriatic Arthritis, Remicade, surgery

Daily Journal – 10/13

Today I hardly care that I have psoriatic arthritis.  It hurts a bit, but its no big deal.  Same thing with migraines…I woke today with a mild one, but still no big deal.  Today I just want to feel better from my surgery. If feels like I have food poisoning and the flu on top of my pain from the actual surgery.  My energy level which was up is today completely spent.  I want to crawl into a dark hole and just breathe heavily and cry out in gasps, wimpers, and screams until the pain goes away.  Tomorrow will be a better day.

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Filed under Coping, Daily Journal, exhuastion, Migraines, Pain, Psoriatic Arthritis

Is this what normal feels like? Daily Journal 10/3

I woke this morning pain free blue.  But it was more than that, my energy level is good, no fatigue.  I didn’t feel like a sick person having a good day, I felt healthy.  I feel healthy.  I got through 10 minutes of Miranda Esmonde-Whites Classic Stretch, which is the most I have done so far.  The Warm Springs PTA is hosting a parent walk at the school that I hope to go to.  I feel like going now but worried the exercising plus the walking will wear my out and I don’t want to risk this moment of health.

I was uncomfortable during the Remicade Infusion yesterday.   I was achy and there was a deep pain shooting through my whole arm the whole time, it felt like a deep cool ache, but after about 30 minutes they added the allergy meds and I fell asleep pretty much immediately.  I slept during the infusion and for an hour or two after.  My husband who had to drive me, stopped on the way home and got my a chocolate covered strawberry.  It wasn’t the best I have had but it sure brightened my mood and made me feel a bit better.  I was able to get out of bed and help make dinner last night, and we had a family dinner around the table.  I didn’t experience the estreme fatigue later into the night, nor do I feel it this morning.  I do have my own lovely Remicade stink. My doctor confirmed it could be a side effect, which it has to be, it has never happened before remicade and it always starts the same night as the infusions.  So its back to several showers a day.  Even if I have a couple great days like this it will be worth being a bit unpleasant.  Oh, and NO migraine.

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Filed under Daily Journal, exercising with illness, exhuastion, Infusions, Migraines, Psoriatic Arthritis, Remicade