Give me an IV

If you know me you know I avoid as best I can prescription pain killers. It’s bad enough that I have my infusion and the Meds to counteract my reaction to it, I don’t need to put more ick into my body. I also just don’t like the way they feel. I lose ambition, feel loopy and slow and I am completely uninspired to do anything. I do however take more Aleve and Excedrine than anyone ought to.

I am having a bad flare up though. My chest pain has been so bad that it’s keep me from dancing and classes. and last night it kept me awake most the night. I found myself looking forward to my husbands 4 am alarm so I could turn on the tv for distraction. As is often the case secondary illnesses are also flaring up. Migraines, acid reflux, and allergies.

Days like this I long for those pain killers I so judiciously avoid. Or an IV of something that will just knock me out. But I know that they aren’t good for me in the long run and I need to look at the big picture. I am sure I will be dancing again soon enough, but for now forgive my laziness.

I will continue on Remicade

After meeting with my doctor last week I learned that there is one other injection that I can take but it isn’t as strong or have the success rate that Remicade has.  However the doctor mentioned that some medications work better than others for certain people and you don’t know for certain until you try it.  I mentioned I don’t like the idea of taking steroids on a regular basis.  He increased the anti histamine drugs in my premed and suggested I take a otc allergy med daily for a week and then as needed.  I went home and to bed and slept for about 24 hours I think.  I didn’t wind up taking the daily allergy med as this time it didn’t get any worse than a mild itch.  He did say the itching that occurred even a month later was due to the medication in my system still. The itch seems to act up when I just wear myself out and I hadn’t been sleeping well at the time.

My migraines haven’t seemed as often or severe, but of course I happen to have one today.  I guess I am lucky, I don’t have to work today.

I am glad I don’t have to give up the Remicade at this point.  It really seems to be helping me live a full functional life with only a moderate amount of pain for most the day.

Other health news is my primary doctor has put me back on daily Prilosec saying that the depletion of calcium is much less dangerous than esophageal cancer, which is a danger with long term chronic acid reflux.

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.

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.

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.

Daily Health Journal- Oct. 11th

Well I am confined to my room to avoid exposure to infection for another week or two.  I have a moderate amount of pain from the surgery.  Other than that I actually feel better than normal.  I haven’t had a migraine in a couple of days.  I had one brief ice pick headache this morning and that is it.  My arthrititis pain is minimum but I am on pain pills still so it may just be covered up.  I am just taking tylonel with codine.  With the pain pills my pain level is green, without it it goes yellow orange.  I am just glad to be alive.

Surgery and Remicade

The rule is if you need surgery you need to plan it at least 6 weeks after your last Remicade injection.  The reasons being remicade compromises the immune system, and surgery not only leaves someone vulnerable to infection, but also can leave the body weakened and unable to fight infection as well.

The problem I had was that I not only had a gallbladder full of gallstones, which may have been able to wait the 5 more weeks for surgery, but that it was infected.  Once all my doctors realized the gallbladder was infected it they were very quickly on the same page that it needed to be removed immediately.  The infection I already had was more dangerous than a hypothetical one I could possibly get.

The great thing is that when the removed the gallbladder they removed all the infection.  Blood test showed that they got it before it entered any other part of my body.  I feel really fortunate.  I am so glad I listened to my body and went into the emergency room.  A gallbladder full of stones is painful as heck but an infected organ in someone with a compromised immune system can be life threatening.

After care is a bit of an issue but nothing that can’t be handled.  I was given a private room in the hospital to limit my contact with other people.  My husband spent my day in the hospital vacuuming my room and scrubbing my bathroom, making sure I had clean sheets, etc.

I need to limit my company, which is very hard because I love people and company and I also hate to tell people they can’t see me.  My grandmother seemed hurt when I suggested she didn’t need to come to the hospital and bring my dad and his girlfriend.  I dearly wanted to see her, and found it easy just to risk it and let her come.  My family I need of course and they are taking precautions like showering as soon as they get home and washing their hands and using antibacterial gel when they come into my room.  I am restricted to my room because I am not a great housekeeper in the first place and it will be much easier to ask my family to keep my room sterile than the whole house.

If someone really wants to visit me I need to make sure they haven’t been ill, or around anyone who is ill and that they wear a face mask while they are visiting.  I feel like I am being a little paranoid and maybe I am, but if I get sick my body won’t be able to fight it like it would normally.

I woke last night thinking I was silly, and that I should just act normal. My energy level is ok and I actually feel decent with the pain meds.  But I woke and spoke with a family member and realize I am doing the best thing for my body, and the people who love me.  I am going to try not to worry about people thinking I am being silly or paranoid, not even when that person is me.  I am just going to allow myself to be a little extra high maintenance for the next week or two.

My doctor said he normally sends people back to work in a week or two.

I am going to keep this limited exposure at least until I see the surgeon for a follow up next week. Maybe a less limited expose for the week after,and I plan on going back to work in two weeks.

Daily Health Journal- 9/27/12

Yesterday I said that I had been on Remicade a month, but I am notoriously horrible with math and its been 6 weeks, with my third infusion scheduled for next Tuesday.

Yesterday I struggled still with exhastion but was able to run errands and finish a painting.  After dinner, where I over ate a bit, the ribs that had slipped over the weekend started really giving me problems.  Its hard to breath, but slipping rib syndrome is something that is unlikely to ever improve and I can’t afford to go to the chiropractor ever time a rib or two gets dislocated.  If I had unlimited funds I would go to the chiropractor a few times week, but instead try to limit it to once or twice a month, which tends to be enough to keep me out of the emergency room.  Two alleve tempered the pain enough so I could sleep, and two more this morning so I can get through the day.  I am helping my grandmother get ready for a big estate sale, so I will just need to communicate that I can not lift things.

Exercise on hold until my ribs are a bit better.

Another day without a migraine, sounds like a great day to me!  Also arthritis pain a minimum!

Woke up at 4:30 am with a code red migraine.  Took some Maxalt, then at 6 took some excedrine migraine, then topped it off with a cup of coffee.  Its now a tolerable yellow.  Annoyed that they migraine free time lasted less than two days.  The rest of me is feeling rather good, but have been focusing on relaxing the last couple of days to have the energy for my  art show this weekend.  Some chest and jaw pain last night, but went away with Aleve and sleep.

Daily Heath Journal- Day 26

Yesterday was a decent day.  Had a migraine that wasn’t all too bad, yellow for most the morning, and gone by mid afternoon after a couple of cups of coffee.  I had enough energy to take care of some simple chores and errands.  Had chest and jaw pain in the evening, not so scary now that I know its just the tissue around my heart swelling  and imitating heart attack pain and that my actual heart is just fine.  Took an Alleve around 8 pm and that was it.

Doing my best to take it easy for the next two days and still be completely prepared and packed for Catalina Art Festival. Must remember to pack all my different meds for pain, which isn’t a whole lot and most over the counter but I would hate to be stuck without it.