Tuesday, October 4, 2011

Sarah, prototype "no pain". Projected launch: coming soon!

New colorful blog presentation, new Jewish year, new meds. New hope. :-)

This "tweaking" of the Fentanyl patches is difficult and complicated. The reason to persevere is that it helps the pain go away. Nothing else ever did that. I truly believe that this is the solution to my pain woes, but it is complicated getting the dosage right. There have been times I overdosed myself and wound up nauseous all day. Then, there are times like today...

Last night I put on a patch of 25, reasoning that it is in place of my regular two patches of 12.5 I had been wearing. Sounds logical, right? It seems, however, that 25 is stronger than 2 patches of 12.5. Go figure. So I surprisingly slept **all daaaaay**. I had things to do! I thought I'd take a nap, then get up and go swimming, then get to the craft shop to pick up what Shifra needs for her school project, then come home and have an afternoon with the children, make dinner, ...the usual. I woke up from that nap at *8:30pm*. Thank Gd Robert was off today. He did the whole afternoon. It meant, however, that he was unable to do the things *he* had to do today, which makes life more difficult.

This experimentation is costly (family-wise. The cost itself is virtually free). It has been costly, actually, for so long now. It sometimes seems like life will always be this way, but I have faith that it won't. Please Gd this medicine is the answer, and we will get the dose right soon. I haven't had faith like this in any other medicine l have tried before. I have never been out of pain before, either. It is still a miracle, every minute I am out of pain. Stepping out of bed, getting down and up from sitting, walking with less pain, or no pain even. I pray that it will work itself out SOON. Meanwhile, I need to go back to sleep now, I am still very sleepy, even after sleeping all day. I keep fixing typos every other word-- this medicine effects my fine motor skills when I get too much.
I did talk to my kids today when they came up to my bed here, each one, when I woke up this evening. At least that.

There is an update about a different aspect of life after nf; this one about gapey. That rash I have had for many months now; I went to a dermatologist for it about three weeks ago. The cream she recommended didn't work in the long run. I put it on twice a day, and it helped only for that day. The next day it looked the same again. I did it for a few weeks, and the rash never went away.

I went back to the dermatologist yesterday. She said now that I should not put anything on it for a week, then she will do a culture to determine what it is. It is tight and uncomfortable with no creams on it, though. She suggested that my body is rejecting the graft in that place. If that is the case, there isn't much we can do about it. Just hope it won't spread. We'll have to wait until the culture (scheduled already for next week) to determine what may be going on. Again, NF is the gift that just keeps on giving.

All-n-all, though, I feel optimistic. Things are looking up just knowing that there is a way that I can be out of pain. I pray (together with you) that the side effects end and I will be able to use this patch freely. Being on such a strong narcotic (it's stronger than Morphine), though, takes it's toll. "It is what it is"; that's what Robert keeps saying. It is hard for him.

Reaching new stages comes with growing pains. We are still aiming to give birth to this baby: Sarah, prototype "No Pain". Labor pains, growing pains... very similar in concept!
 No hip pain, however, is a brand new concept. One that I like very much. I am willing to go through whatever it is that I have to go through to hold onto this concept; this reality.

Lots of praying, lots of patience. That's the only way.

1 comment :

  1. what a possitive and upbeat outlook you have , even when things didn't go your way! I'm sure the kids and your hubby feel this possitive energy in your home. what a bracha! may you and your husband and children be written and sealed in the book of good health, happiness, and parnassa,and may we have peace in Israel! rochel.