Tag Archives: daily Journal

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. 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. 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 Health Journal- 10/17

I continue to recover from the surgery but today I was more achy and tired than usually am.  I think I am not getting enough sleep but I have been stressed and also waking in pain so that isn’t helping.   We have had a little life change here at my house, I took in a sweet girl that I met at the hospital, and she is struggling with her own health issues.  I am now worrying about her health as well as mine, but we are only on this earth a short while and I feel we must do as much good as we can for as long as we are able.

I woke today feeling like every muscle in my body hurt, and my body hurt with the slightest touch, even laying or sitting down the pressure of what ever I was against was painful, it seems to be all just psoriatic arthritis.  I have had low energy all day.  Still only the smallest trace of a migraine.  I was able to work a little bit on planning for a class when I get back to work, but I am afraid I wasted half the day staring at facebook screen and watching bits of the debate.

My son and now husband are both sick so I need to steer clear of both of them.  I will cuddle up in a giant bean bag and sleep with the cat to avoid husband germs.  That doesn’t sound so bad.  The cat snores very quietly.

Tomorrow I go and get the stamples out…I will be so glad for that.

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

Gallbadder problems

This blog has become more of a general health or shall I say illness blog. I suppose it’s a necessity  as the main reasons for my blog are to increase my own self awareness and management and to communicate with others.   By blogging I have realizes that psoriatic arthritis is just a portion of my health struggles.

I haven’t done my health journals in a few days as I am in the hospital. Sunday evening I started feeling pain at an event I was attending and brushed it off as the arthritis as I am in pain so often. It progressed through the night severe pain in my torso and eventually  I went to the ER worried it could be my heart.

Instead I learned it was an infected gallblatter full of gallstones. They removed the gall blatter last night. It was stressful knowing that I had just had remicade the night before and surgury is discouraged within 6 weeks of Remicade due to risk of infection. I had no choice as my Gallbladder was already infected.

I will blog more on surgery and remicade later. Typing this with my phone. Right now I seem to be doing just fine. I am pretty sore and have a migraine but this hospital is probably the  best I have stayed at.

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Filed under exercising with illness, Infusions, Migraines, Pain, PsA, Remicade