Monday, December 29, 2008

20 Days Post-3rd Infusion

I just saw my pain doc for my first follow-up today after my last infusion on the 9th. I'm still getting wonderful relief. Dummy me though decided to shovel/chop the ice at the entrance to my driveway the day after Christmas, so I've been sore from that, but nothing ibuprofen couldn't help with. Most of the time my pain is on the low end (one on a one-ten scale with 10 being the worst.) Sometimes it's a two. I've started to titrate down on the oxycontin, and the withdrawal symptoms are sometimes worse that dealing with the pain. My doc is very understanding, trusting, and willing to let me use my own judgement on how best to do it. He gave me a guideline, and most of the time I can take 20mg at night instead of 30. Once I do that for a week straight, I'll lower the a.m. dose. All in good time. He's okay with waiting until it gets a little warmer too, since bitter cold seems to cut right into my back. Anyway, I feel great and very optimistic! I'm anxious to see what warmer weather brings!

I also stopped taking the Procardia XL on my own, without dr. input/advice. He wasn't concerned. It was prescribed the very first time I saw him and he diagnosed the CRPS. It was to improve the circulation, by keeping the veins dilated, etc. (something like that). Anyway, I seem to have had more swelling than usual in my feet since the last infusion, but I don't want to assume that it's from the infusion. I've had trouble with this before. I'll be seeing my regular doctor the first week of January sometime, and we'll see what she thinks. My hands have also been very swollen the last week as well. It wears off later in the day. I know I've had some saltier foods with the holidays, so that may be it. I've been on a blood pressure medicine that includes a diuretic for years because of fluid retention with my high blood pressure. So, I'll let you know what I find out.

I will be checking with my regular doctor about my depression. At the moment I don't feel depressed; I think the holidays and time off from work have helped. Even though my pain is down so low, with the meds and their side effects as well as withdrawal symptoms, the mornings are still difficult for me. Hopefully I'll be able to find a routine that works so that I can get my butt out of bed.

I must say, this has definitely helped my love life! Even though I will admit that I'm one of the people for whom sex had the added benefit of giving some temporary relief to the pain - about 30 - 45 minutes or so. Enough about that!

Sunday, December 14, 2008

Third Ketamine Infusion

The third infusion was done on December 9th. We had an ice storm early that morning, and I wasn't sure I would be able to make it. Sheer determination prevailed, and the Iowa road crews had done their jobs and I made it. Of course, I wasn't able to get my car until 2 nights later! Everything worked out though. I didn't really have any strange feelings with this infusion - mostly just felt like I took a nice nap. Wasn't too awfully difficult to come out of it. It was funny watching the video I took, because I asked the doc a question about his Christmas plans, but I don't remember asking it, and he answered but it was obvious I was out by then! And when I woke up, I had the monitor leads on my chest too, which he put on after I was under the anesthesia. I was dizzy as usual until I got home, but was able to stay awake all evening, and really didn't feel like I'd had anything different go on that day. I'd say my pain was at a 2 when I arrived for this final infusion, and was between a zero and 1 when I left. I slept fine all night, and went into work the next day at noon, and worked until 8:30 that evening! This was the first week I've actually put in a full week - just over 40 hours - since May of this year. My energy is returning, and at times I'm usually able to go 12 hours or more until my next dose of Oxycontin. I've been on 30mg twice daily, and just this evening (after going 15 hours since my last dose, I decided to only take 20mg for tonight. I will speak with the doctor's office tomorrow to get the "official" titration schedule. He also wanted me to call and let him know how I felt.

One of the things I've noticed is that my senses of smell and sight have been slightly altered since I started. My smell seems a little keener - not that there's always something there to account for what I think I'm smelling, mind you! And I seem to be seeing things I hadn't noticed before.

Of course, everyone who knows me knows that my memory has been affected by the CRPS, as well as the meds. I'm hoping that improves as well, by I won't hold my breath on that. It would be nice, but I'm more than content with the pain relief.

While total pain relief would have been awesome, I am so happy with this result. Given that so few of these have been done and that I'm my doctor's first patient to have the infusions, it's impossible to say what might happen, and whether I have achieved maximum benefits yet. At any rate, just to have worked a full week has been an absolute blessing.

I know that all this could not have been possible without God's love, and the prayers and support from family, friends, coworkers, and strangers alike. I am truly humbled. Thank you from the bottom of my heart.

I may not blog as often, but plan to keep everyone apprised of all developments with my CRPS.

Wednesday, December 3, 2008

Second Ketamine Infusion

This infusion went much better. No weird "trapped in a vortex" feeling. The only word I can come up with to describe how this one felt is "swirly." I was in a much more isolated and quiet area this time. They have these really nice private recovery rooms clear in the back of the surgery center! Private bathrooms, everything. And I tricked the nurse who was so gung-ho about following surgery center rules. I rolled up my pj pants above the knee, and pulled my camisole down around my waist, and covered it all with their little scratchy hospital gown. I insisted on keeping my glasses on (told her they let me last week, which they did), and tucked the silly little hair hat into the gown pocket. And my doc was just fine with it and got a good laugh out of it too! So this footage was a bit different. The last time i was in a recliner, sitting up fairly well, and i opened my eyes briefly and frequently. This time I got to lay in a bed and the doc moved the IV machine into the hall so the beeping wouldn't bother me. You can tell it's a better experience just by looking because I barely move the entire time, and I think I only open my eyes a couple of times.
I can already tell that because I'd started to regain my strength and was already feeling better, I was able to move around earlier this time and have been out of the bedroom and awake since just before noon today. So tomorrow going back to work will not be so difficult. I believe that God works in my life, and the little "freak" snowstorm today that ended up cancelling the staff meeting at work, and the class I was supposed to teach from 4:30 to 7:30 this evening.
So, one more infusion to go - December 9th at 1:00pm (or later, as has been the case!)