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.
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.
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!
I was speaking to a microbiologist friend of mine about my immune system and how paranoid I have been and it was her professional opinion that I would be just fine wanderng my own house since all the microscopic creepy crawlies (my term, not hers) are things I was already exposed and resistent to before I went into the hopital. So I am now only confined to my house and not just my room.
This new freedom came at the perfect time as I am starting to finally feel better. The pain is mellowed enough that I haven’t had to have a pain pill yet today. I figure I will have one if my pain level goes above yellow. I was able to get up and make lunch for the kids today, as well as clean out the fridge. Then I sent the girls out to do some grocery shopping. I wore myself out a bit but it feels so good to get something done. When my husband gets home I might talk him and the kids into getting the halloween decorations out of the garage, and I can sit comfortably and give orders.
No migraine today. Been getting a small amount of ice pick headaches, seems like one every other day or so. Arthritis feels alright. I am really hopefully the Remicade might be working. I haven’t had any trouble with acid reflux much either but I am determined to no longer ignore that, when it returns. Still having stomach problems but I read that can happen right after a gallbladder surgery, because the body isn’t used to regulating the bile. Eww..gross enough of that talk.
My energy level is up and looking forward to life back to normal…or maybe even life a lot better than normal. A new better healther normal.
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.
I woke with a migraine, which is an extra bummer because now it will be harder to tell if today’s infusion gives me a migraine. I have an appointment with my doctor before the remicade
Things I need to remember to communicate with my doctor-
Migraines and if I can take migraine meds before the Remicade
Chemical scent directly after meds
Extreme exhaustion in the days after infusion
Crankiness after infusion
I was able to help my grandmother three days in a row. I have found if I am not in too much pain three cups of coffee spread through the day will give me just enough energy. Its a temporary solution I know. The coffee and caffiene will wreck havok on my acid reflux, cause a chronic cough, and exasperate my slipping rib syndrome.
My ribs were bothering me yesterday but not as severely as the day prior. I woke with a migraine today but I had gone a whole week without one, so I would feel ungrateful to complain. My psoriatic arthritis pain hasn’t been bad at all, so I am hopeful that the Remicade is working. The nurse did say some people see results in as little as six weeks and thats where I am. So far I haven’t noticed any side effects, such as hair loss or infection; only rather extreme fatigue for a few days after the injection.
Took some off brand migraine asprin as excedrine migraine is still off the market. Hopefully it will also take the edge off of the rib pain.