The Corona chronicles

Long time no see!

I haven't written since February, and here it is almost May. I have thought about writing many times, but for many reasons I just felt I didn't have anything to say.

I re-read my last entry. I was talking about all the things I am up to, and how I'm not finding satisfaction in them. Well, they all got taken away during this Corona crisis shut-down, and all new levels of how to spend my days are presenting themselves. It's been a problem to invent structure to these unstructured days.

I had started the bituach Le'umi career assessment, but it got cancelled in the middle because of the shut-downs from Corona Virus. Things are slowly re-opening at this point, so I'll await a phone call from them regarding when we will continue/finish the evaluation.

I think the place where I have been doing the jewelry making is going to re-open soon, so that'll be nice to get back to.

In the meantime, days have been slow over here. I've been sleeping late, and resting a lot. I tried doing a walk every day, but my right hip hurts so much that I have to rest so much after a walk, and sometimes take a Percocet for the pain. Not worth it. Tomorrow morning I'm going to the orthopedist to see what he says about a hip replacement. Last time I saw him I was thinking the left hip needs replacement, but I started taking that supplement called Cetyl Pure and it helped, so I pushed that off. I am still taking the supplement, but it isn't helping my right hip now. The left one hurts much less, but the right one is causing me trouble. I'll know more tomorrow.

I am still practicing horn almost every day, going through exercise books which I went through in College & grad school. They are challenging me all over again. I'm still finding it hard to feel inspired to practice when there is nothing to practice *for*. I need an immediate goal that I can practice for. I wish there was an opening in an orchestra nearby.

We're all trying hard not to get the Corona virus. We wear masks outside, but I gotta say I haven't been so good at that. I find it so hard to breathe if it covers my nose and mouth, I often don't wear it unless I know I am going to be in close-ish contact with other people (like at the grocery store). We mostly stay indoors, though, that is the best way not to catch it. Robert is the one who usually goes to the grocery stores, and he wears a mask there. What strange, apocalypse-like times we're living in. My two younger kids are distance learning in the mornings, and occupying themselves in the afternoons/evenings with computer games, communicating with friends, playing guitar, Shifra is painting a lot, she paints beautifully. Ya'akov kind of has his days and nights turned around, gets up around 4 or 5 in the afternoon and stays up late into the night. I hear that about other late-teens early 20-ers also. He needs a lot of support and understanding for wading through these strange times when everyone is home all the time. I think he's trying to avoid too much family together time. Everyone handles it in their own way.

I have been feeling so lost, honestly. And my motivation to change it is very low. Lathargic, I'd say. I will hopefully look at life after things re-open (jewelry making, the gym/pool) more positively when it happens. I certainly will appreciate having a schedule and order to the day after this odd time period!

Today is the anniversary.... of the original hernia surgery which lead to the NF. Truth is, I learned from the lawsuit that there may not have even been a hernia. The pre-op time period didn't have any testing which would tell us if there was a hernia or not. No ultrasound, CT, nothing. The surgeon did a hernia repair anyway, but according to the post-operative notes, it wasn't so clear that there was a hernia. It's so messed up when I think about all the mistakes that were made which turned my life upside down, and now I don't know if I can ever get back to feeling good. Last summer in New York I had the reconstruction surgery, and I am out of belly pain now. Only my hip remains as a trouble source these days. It is pretty miraculous when you think about all the illnesses and pain I've been through over 12 years....and now it's boiled down to only one problem spot, not having to do directly with the NF. (But it could be an indirect effect because of all the years of limping, favoring my left leg, the right one took a beating. When I had the right hip surgery about 5 or 6 years ago, the orthopedist told me that there was no cartilage at all in the joint, and he did a fix that should buy me about five years before I'd need a hip replacement.)

Actually, I do still have one small but sharp belly pain when I play horn sometimes- not all the time though. I think that is probably not going away, it's been almost a year since the surgery (9 months). I can still hope it'll go away, I just have a feeling I'm stuck with it. Robert's theory is that it is the part of the mesh that the surgeon left in which is causing me the pain. Could be. (the surgeon last summer said that he took out 60% of the mesh, the other part was too integrated with the tissue to remove it successfully.) It might just need more time to form more scar tissue inside in order for it to stop hurting?

So this is the time period, coinciding with the time period in the Jewish calendar of Sefirat HaOmer- the counting of the "Omer", 50 days between Passover and the next holiday of Shavu'ot, the time period when I had the hernia surgery and then septic shock and NF four days later, in 2007. It is an intense time period for me, and my body and soul remember. I no longer hold anger for the surgeon who messed up, but he's not high on my list of people I want to have contact with. I am a survivor. My whole life was changed in this one day 13 years ago. You never know what is around the corner, especially when it comes to medical things. I thank G-d for my health, and grieve what I lost to NF and everything that followed it. And now that I have 9 months of a "new normal", I find myself grieving even more because I am free to feel my feelings, I'm not "busy" with being sick anymore. And I feel lost. I don't know what the future holds, but I pray that it includes me and my family staying healthy, and finding meaning for myself and my family in this strange Corona-stricken world.