Saturday, February 17, 2018

Hopeless comes to mind...

It's been an incredibly hard, busy, sick week.

Sunday I had acupuncture. It was for pain relief and strengthening the tissues around my skin grafts and scars. It was fine, except the needle she put in my right hand hurt a lot, and when it came time to take it out, it continued to hurt, and I could barely use my hand the rest of that day or the next day. By Tuesday, a big red spot showed up spreading around my hand.... warning sign. I know that warning sign very well, I've had cellulitis many times. I went to the doctor, and the doctor sent me to the ER. I waited an extraordinary amount of time (like usual), and finally got an IV of antibiotics flowing. After that one dose, they sent me home with oral antibiotics for the rest of the week. They tried to tell me I don't have cellulitis... simply because my white blood cell count wasn't high. Well, my white cell count wasn't high either when I had NF. I had an expanding red patch on my hand where a needle had been inserted a few days earlier, it was hot to the touch, and hurt like h*ll, all the way to my wrist. I'd call that cellulitis.

the needle went in at that spot between the thumb and the first finger...
where it's red here, three days after the fact.
IRONY: for those of you who can't read Hebrew-
This is my number I held while waiting to be called into the doctor.
At the bottom of the paper it says "acupuncture is very effective
for pain treatment! The introductory meeting is only 70- shekels, blahblahblah...
And there I was in abdominal pain, and hand pain, with a new case of cellulitis from
the acupuncture. Oh, the irony.

I got home at 3:30 am from that.

Then the next day I drove into Tel Aviv to pick up my brother at the airport, then take him to his apartment (in Te Aviv). We met with another friend there, but it became clear that I was an impediment because I couldn't walk much, and they were looking for a place to eat. So, I took a bus back to my car on a Tel Aviv street, and drove myself home. That was Wednesday.

My brother told me about how things were at my late parent's house for the month. He & my other brother worked very hard cleaning it out. VERY hard. It is now echo-empty. Not a carpet on a floor, or a picture on a wall. His last parting action was to take the mezuzzah off the door as he left for the last time. Now it's up to the real-estate broker to sell it. It really left a deep impression on me... that house being completely empty. I grew up in that house from the age of four. It's a big deal. My home-base in the US is gone. I know that my memories can't be taken away, but this is a huge step in grief. I'm sad that the house, holding bad memories as well as the good ones, is gone. It's not sold yet, but it's gone. Another family will be raising their children there, going to the schools I went to. It's the way of life. And another nail in the coffin for my soul to deal with.

Thursday brought me to Jerusalem to a surgical consult about my abdominal pain problem. This was an indirect recommendation from Rabbi Fisher... he had recommended the head of the department to me, but it turns out I learned from the secretary that this particular doctor no longer sees hernia patients. So, he recommended me to go to one who specializes in hernias.

That is the one that got me totally depressed.
He basically said he wouldn't touch me with a 10-foot pole. I have no stomach wall at all (destroyed by the NF), and the mesh that is in there is holding well, he said. He looked at the CT scan, examined me standing up and lying down, and said everything is fine. No surgical intervention recommended, no explanation for the pain I'm in.

I know he's not the end-all-and-be-all of opinions in the world. But that visit broke me in a way that I hadn't broken before. It was his "sucks to be you" attitude that I left with that made me so depressed. I cried to my friend Hadassa on the phone... then she popped in to the hospital where I was for a hug and a chat. (Thanks, Hadassa!)

All Thursday I had a headache.

Friday I had a headache, and stayed in bed just about all day.
Friday night I sobbed my eyes out, just feeling so hopeless.

I don't know if I'll go to the Mayo clinic or not... they accepted my case, and I have a date. But I have no hope. I have no reason to believe that they will see things in a way others aren't. It's a lot of money for me to spend, and I am not sure there is any hope for help there. I don't know if a surgery to break up adhesions would help, any surgery could make things worse of course.

Maybe I need to try to get in touch with a doctor for my case there, see what they are thinking in general. It is a hard decision to fly all that way (very difficult for me) thinking that I may just be told there is nothing they can do for me.

I don't know if something is wrong with my digestive tract; I'm certainly taking a ton of vitamins and supplements these days. Something is CLEARLY wrong, though, somewhere in my abdomen.

I feel that I am going to spend the rest of my life in this half-life way, in pain, with no hope of anything changing. I can't even write how awful I feel, It's beyond my words. I can't even imagine getting my life back. I can no longer imagine myself being back in my life as it was-- even just seven months ago.

What is happening to me? I am disintegrating before my very eyes, and I don't know how to reverse it. I am a non-person, just existing. I am in such a deep depression, I can't express it.

On top of this all, the MRI results from my thigh joint and knee joint was not great. All that pain I have when I go up and down stairs is from a new disease I have in my knee-- basically together with arthritis-- bone-on-bone-- it's just too depressing to deal with. I'm supposed to see an orthopedist also and deal with that, too? I can't. My abdomen hurts too much.

I just turned 50. Yay me.
I feel like I am at 50 what my mother was as 80... in bed and dying.

These could be some amazing years. How am I going to turn this around? How is the pain ever going to go away? This is very serious. I am at the bottom of the ditch.

Next week also holds a lot of traveling. The pinnacle of which is on Thursday when I meet a new healer in Jerusalem, but I am guarded in having my hopes up. I feel I can't have any hope for anything anymore.
It's a bad situation, guys.


  1. Oh my fear friend. I am so very sorry that you are going through all of this. Please don't give up hope. Keep your appointment at the Mayo Clinic. They are very good at what they do. I don't think they would have accepted your case if they didn't think they could help you. I hope and pray that you find some answers very soon and that they can relieve your pain. You ate always in my thoughts and prayers. Much love to you my fear Sarah.