Magnetic family, Passover 5780, 2019

We stick together, us magnetized folks.....

About 6 months ago Shifra (16 years old) had an MRI for a problem that she has with her eye. Now Azriel (my 13 year old) had an MRI last week, and I had one this week. We can all stick up on the fridge and hold up the calendar. Wazi's was for a rare sort of growth in his eye. It needs to be removed, and the doctor (ophthalmologist plastic surgeon) ordered the MRI to see how far the growth goes into his eye/head. What we can see is apparently only the tip of the iceberg. I haven't gotten results for that yet, I'm eagerly waiting. And just a tad worried about this whole thing.... I'm minimizing the impact for you, but it's a bit scary. Oh, and if you see Azriel, **don't** mention this at all to him. Thank you, I appreciate your compliance. :)

I *finally* had the MRI that I've needed for 6 months now, for the New York surgeon, with the 1mm picture cuts throughout the whole lower left belly and upper thigh area. Basically, Gapey. It is for the purposes of reconstruction surgery, which I might be doing as early as late June, but nothing is set yet. This is the surgery that I'm going to do in New York, with the Mayo surgeon, at NYU. The big scary one, but I totally look forward to the results if I don't think too much about all that could go wrong. After the long initial healing period (all-n-all, about 6 months, one month solid staying in a rehab in New York), the results will hopefully do away with the problem I have ongoing now for over a year of abdominal pain most likely stemming from the mesh/pins/clips I have in my abdomen from having had NF. This surgeon is going to take out all hardware, and put in an organic piece that will adhere and fuse with my existing muscle tissue inside, doing away with inflammatory pins/clips/mesh. He will also take away my skin graft and pull the healthy skin together to form one line of a scar from hip to belly button. So, yes, I finally got the MRI done the way he ordered it. It was NOT easy to get anyone in this country (I spoke to technicians in all the hospitals in the country pretty much) to do the MRI with the 1mm fine cuts. I wound up paying out of pocket, but I am pretty sure our insurance will reimburse some of it.

So, Passover! That's what's been happening over here when we aren't getting MRI's.

We had a lovely seder but I knocked out early, unfortunately. I slept through much of the second half, but woke up for the very end parts. We had my brother with us, Robert's cousin, and a woman soldier who we are sort of her adopted family. Then for the rest of this week, I took time off of the day program. They were still there, but with the student doctors, not our regular ones, and it wasn't mandatory participation, and I decided I needed a break. Each day we've done something fun with the family, it's really worked out nicely. Today we just got home from the beach, where we saw friends as well. I also had a great visit with my dear friend who lives in Tzfat (about a 4 hour drive from here).

It's been good, but weird to be away from the program. I've been mostly fine, though, if I don;t think too much about what is going on behind the scenes in my psyche. They have me on a very heavy sleeping pill, so my nightmares are pretty much banished, and I sleep well most nights. As far as the flashbacks, they have slowed down tremendously too, partly due to the medication I'm on during the day. I needed to balance out, I can't get anything accomplished with all the crying I was doing every day at the beginning of the program. I had one flashback yesterday, and it had been over a week since there had been one. The one yesterday showed me new material, I was surprised all over again. I wonder how much new material there is for me to know. It is hard every time I get flashbacks, but even harder when it is showing me new material. But I'm coping pretty well, I think. But again, I think it's the medicines that are helping me cope. I can literally feel the difference being on these meds. I feel more balanced. And balanced is good.

My abdominal pain has returned, and it can be as extreme as it was last year, but it's not consistent. But it's there. I have steroid shots scheduled for mid May, but I am trying to bump up the appointment to earlier. It's really awful when the pain comes, it's just impossible to cope with anything. I don't know what to expect from these steroid shots, if I can expect the same effect I had with the Mayo clinic shots. Probably not the duration I experienced- I got 9 months out of that time, it was amazing. I even had started playing horn again. But that's too hard when I am in pain, obviously. That's why I want to do the reconstruction... I hope it will do away with all this pain I deal with, and I can lead a normal life. What a concept.

We have a big crowd coming to stay with us for tomorrow, Friday & Shabbat. A family of five, as well as one of Dov's friends from his high school years. It's going to be a full house, and lots of noise-- the family of five has three kids under the age of 5. I will have to be strong to go hide away in my bedroom when it gets too much for me. But they are very good friends, and I know they know me well and it'll be OK.

I hope everyone is having a great Passover, and Easter, and spring!
I start back at my program Sunday... or is it Monday? I gotta find out. Anyway, life goes back to the normal/ abnormal grind for us. Back to the coal mines. It's been nice to have this break though.

Happy Passover & Easter to all!