Wednesday, May 2, 2018

Lag B'omer 2018, coma-versary.

I haven't written in a while.
I haven't felt inspired.
The honest truth is that just living day-to-day is a challenge.

Yes, I am getting better... that is no small feat. My abdominal pain, for the most part, is tons better (but not totally healed), and I can do more. I can be on my feet more, and be in life more. Lots of things are getting better; the treatments I am doing with the Doctor of Chinese medicine (Dr. F) are all encompassing, and the medicines themselves are numerous and, I think, working. The treatments are HARD. I am often yelling out in pain, sometimes crying. It's not for sissies, doing this stuff that we have to do to heal my abdomen (and my hips, knees, ankles, it's all a big mess of scar tissue and things out of line because of all the surgeries). I often have quite alarming bruising, and am left quite wrung out the next day. But eventually the pain is lessening. The man knows what he's doing. It just hurts like h*ll. It's real external surgery... with long needles sometimes, extremely strong hands, suction cups, and all sorts of manipulations. I often grab onto the sheets around me, bracing myself with the pain. Sometimes I can try to relax while what he is doing is hurting, and he can accomplish more when I can. He can break up more scar tissue if I can relax... easier said than done.

My headaches persist, unfortunately. We're working on that. Mostly if I decide I can't take it anymore, I take analgesics when possible (only twice a week so I don't get rebound headaches), and my new "toy"-- a vaporizer for my Cannabis helps out as well. Yes, I finally got my licence renewed, and got what I need.
But there have been some pretty massive migraines of late... a few each week.

So, although there is an upward trend that things *are* improving, I am still often very sad, or angry, and hard to be around. Hard to be with myself, too. I'm going through the withdrawal of my pharmaceutical meds, also. I am on four main medicines (the "conventional medicines"- not the Chinese meds), and they are all in various forms of cutting back. So yeah, my mood is going to waver-- a lot. It will even out after all is said and done, but this is a very hard stage. I am happy to be getting off them, it's been a long time coming. And for the most part (if I don't have a headache) I have been sleeping well, on *much less* sleeping medicine than I have taken since I got sick 11 years ago. I have a schedule of when and what to cut. We are doing it wisely, and with precaution, and lots of support. It's a good goal, but a hard journey.

I also seem to have a type of anemia. According to all my blood tests always, finally Dr. F told me the type of anemia I have... it's not classic anemia, my hemoglobin is OK at 12. It's called Pernicious anemia. Intrinsically it is because of the lack of ability for the stomach to absorb vitamin B12. But simply taking B12 isn't the answer (I've tried that before, does nothing). So again, a milti-faceted issue that we are dealing with in my treatments and Chinese medicines which fortify blood. It could be a contributing factor in my constant unrelenting fatigue, and possibly the headaches.

Tonight on the Jewish calendar marks the day, 11 years ago, that I woke from the NF coma. It is one of those Highly Significant Days for me that I will never forget. My eyes opened, I blearily saw Robert standing next to me. I couldn't feel anything in my body, and could barely move my limbs. I couldn't talk because I was on a respirator. It was frightening. The nurse alerted Robert that my eyes are open, that I am waking up. He turned to me, and started crying, and hugging my shoulders. He told me not to try to talk, and not to be scared. The doctors said I had a bad infection but it is under control. He also told me that that was the very minute that was organized by everyone who was on our CaringBridge website to say a chapter of Psalms together, at this very minute. All over the world, friends and loved ones were reciting the same chapter of Psalms, and that was when I woke up. Did you just get chills down your spine?

Robert then told me it was the holiday of Lag B'omer (as it is tonight), which was four days after I had gone in for the exploratory surgery when they found the NF (which itself was 4 days after the original hernia surgery). That was shocking... four days happened in the world that I slept through completely. I had no idea that the whole country [world, actually] was praying for me... one very long Shabbat. I still had no idea of what happened, what bodily damage I would have to contend with, none of it. Just that Robert told me I had an infection, but now I'm out of danger. I didn't feel any pain... I drifted back into my medically induced coma. Next time I woke up I saw my parents walking into the ICU. They were told things were bad and that they should come say goodbye.... what a 12-hour-flight that must have been. My mother threw herself on top of me crying "my baby, my baby". I was awake, they had just taken out my breathing tube. My father immediately started grilling Robert for answers.... what a thing. I have so many memories. They all come flowing back during this time period. My body remembers, my mind remembers. I wrote about other details in my book, which I hope to start up writing again.

I guess what I really want to say is... is... so many things. I want the end of my book to be that I forgive the surgeon for his mistakes (plural). But that's not my reality. I can't forgive him. I want to, but I'm so embittered by what happened to me, which he could have prevented. That just may have to suffice for the end of my book. We'll see when I get there.

Even though my pain situation is improving, I still struggle every day to: get out of bed, to eat properly, to deal with my fatigue on a constant basis, to deal with migraines coming & going and the aftermath there of, I try to do a yoga routine. I take a zillion little pills three times a day and pray they will help my body to have balance, to heal. My abdomen still hurts, my skin graft causes me problems, it's a constant thing. I can't play my music, I can't help birthing women. I lost so much.

I pass a "store for rent" sign near where I live and fantasize about opening an all-your-needs here birthing store.. baby carriers, pre-natal classes, lactation consulting, doula services, breast milk pumps, all of it. I have so much to offer. 74 meters is perfect. But the thought goes right out of my head; I can't be consistent. One day I'm good, the next I'm down with a migraine or horrific pain issues. I have so many dreams. I still get messages about playing in orchestras. Every day that I think "this will be the day I play horn again", something happens. Sometimes it's with one of my kids, but usually it's a problem with me. This week I went to Jerusalem for two treatments... that also eats a lot of time (and money).

My whole life & time is taken up by trying to get healthy, trying to stay in the world. You guys who get to work your careers, or jobs, and have a life that is quite routine... you can't imagine. You can't imagine what this life is like. Constantly not knowing what is around the corner, not knowing if I stay up that extra hour will cause a migraine the next day. Not knowing if I'll be down the next day or up, and for how long can I expect that? My kids don't get a mom who is consistent. The other day I had to shut everyone out for an entire day and night because of the migraine. This happens weekly. It's a crazy life, and yeah, I feel sad about it. I can't come to grips with it, even 11 years later. In the beginning it was even worse- hospitalizations every other month for infections, surgeries on average once a year, but there were years with two or more. Now life is much quieter than that, but I never got it all back. And I don't know if I'll ever really be out of pain. Dr. F is doing everything that can be done, and it's helping in a tremendous way. But my body got hit bad 11 years ago, and with it, my soul also.

It's supposed to be happy that this is the anniversary of when I woke up from the NF coma... in my NF support group it's called a "re-birthday". But it doesn't hold strength and courageous feelings for me like it does for some others. It holds the hard, hard memories, all of them, and the tremendous sadness of loss.

1 comment :

  1. B"H Dear, dear Sarah. None of us, I don't think, could begin to know what you are going through to 'stay in the world'. We need you with us.