Tuesday, April 14, 2015

Vacation pictures, update

I had two near-perfect days, during the family vacation days over Passover!

I had completely forgotten what it was like to feel *nothing*; no aching, hurting, spinning, or just wrong. That feeling of malaise often accompanies much of what I do in my every day life. It is just a regular accompaniment I have come to expect and accept. But, for those two days, I felt *normal*. My old normal- energetic and not hurting.

The week of vacation went very well, but after those first two days of energy, I went way down hill because of all the traveling we did. Too much traffic, too much traveling. I kind of knew that from the outset, that we planned lots of driving, but I sometimes still don't know what my abilities are, at any given time. I had a pretty bad crash, though. Almost completely useless by the last day, when we went to a beautiful beach. I *love* the beach, as you know. I didn't go into the water for two reasons: 1. it was still pretty cold, and 2. my right hip hurts so much these days that I figured the cold water together with the strength needed to stay in the ocean and not get swept away by the current was going to be way too much for me. I sat on the sand, but that was limited, also. Next time we bring our beach chairs.

Here are a few pictures from the vacation:

me & Robert at "Ma'alot" for the day, which featured sculpture making.
me and the ocean... always have been a good pair
me & my littlest guy
Shifra's big silly smile

Shifra, Azriel & Robert
sibling huggie!

just before she exploded out of the sand...
my kids together with friend's kids on the lake in Ma'alot
Shifra doing her own sculpture of her initial

Ya'akov busily carving his statue


So, I've been still trying to find a balance with the medicines. I am still on Fentanyl 12.5 for the time being, and my sleeping is still a problem. It's still completely a pharmacological sleep. Last night I actually mixed two drugs that weren't supposed to be mixed because the restless leg was *SO* bad last night that I was desperate to stop it so I could sleep. If you wonder what RLS is like, picture: just as soon a you feel you can rest, there is a little pulsing feeling going on inside the leg. That pulsing feeling is constant, and sometimes it actually graduates to making the leg bounce- visually. The pulsing feeling is totally crazy-making. It makes me want to jump out the window, or drink heavily, whatever comes around first. The jumping leg makes me move around a lot and stuff pillows all over the place to try to control it, but it can't be controlled except with drugs because it is the nervous system going haywire. It is only in my left leg because that is where everything was cut, grafted, blocked, and sewn back together. Anyway, it is only one of the things that can prevent me from sleeping. Last night I took three different things, including cannabis drops, to try to stop the leg annoying me so I could sleep. Instead it (the medicine combination) just gave me cotton-head and dizziness all night. I'll get the formula right for sleep one of these days.

Since my right thigh joint and something going on deep inside the joint (I feel it) seems to be getting worse, finally (after 7 or 8 months of telling my doctor that something is wrong in the right side) I have a referral for a CT scan to investigate. That pain is like a burning, surging on-and-off pain, right in the middle of  my thigh joint (hard to describe, which is why we have to look deeper). Ultrasound 6 months ago showed nothing except over-sized lymph nodes, but my lymphatic draining lady says that the part she presses that hurts is *not*  lymph nodes. It's something inflamed inside. So, I went to my family doctor (for the 4th time about this specific problem!), and we decided to CT scan it (with contrast fluid in an iv) and hopefully see the problem. Something Is Wrong. I know it as clearly as I know my own body. I am thinking it may be PVNS, and I am also thinking worse.... but I try to kick those thoughts out of my head.

Mostly, especially recently, with the 8th year anniversary of NF coming up, I have been dealing with memories again popping into my head. How do they (my thoughts) know the calendar? The memories are not as bad as they used to be (no nightmares), but that doctor who did the original surgery which lead to NF, keeps popping into my head. Not a day goes by that he doesn't pop into my head for some reason or another. Every day, still. Usually multiple times a day, extended periods if I need to be in Soroka for something (like yesterday).

I ran into him at one point before Passover, and it was so weird. We just passed each other on the pathway, he said "hi Sarah", I said "hey". So much shared history, so much I want to ask him now that I am more intimately familiar with my medical file (and all the mistakes made), so much I want to say. But, it's not possible. Not any time soon, anyway. I wish he wasn't in my head every day. But I gotta accept it, while trying to change it at the same time. The memories may fade (although they haven't yet), but the people involved in the memories are still quite alive, providing me with memories that are visceral, as much as they are difficult.

On Wednesday I go to my spiritual healer whom I used to see more regularly. She has been so helpful in the past, and I need her now again. I had to stop going to her because it was dangerous for me to drive the distance to her town with the high dose of Fentanyl making me drowsy. Now that the Fentanyl is much lower, I don't fall asleep driving any more. In fact, I don't sleep much in general. So, it is time. No more new naturapaths or healers. I'm coming back to my "home-base" healer, from many many years (even before I was sick), and looking forward.

Detox remains one of the hardest things I have ever done. But I am doing it. Tripping on land-mines along the way, but going forward. I need balance and quiet, in my head, as well as my body. It will happen. It will happen.


  1. I wonder if mirror therapy would work to trick your brain into seeing your leg as just absolutely normal and in no need of jumping. Just a thought. Love you! Loved catching up. Good for the soul.

  2. ~blessings and prayers...thanks for sharing...!