Category: Uncategorized

Snippets that I’ve written but never posted

January 7 or 8, 2019:

I am going to try to start this weblog again. There is no way of knowing if I ever will escape from the nursing home, but if I will, this is the beginning.

After years of waiting, they have finally installed a lift in the ceiling of the therapy room at the Center for Multiple Sclerosis. Last week, for the first time, they were able to lift me onto the tilting bed. They strapped me on, tilted me up to 35° and left me there for 20 minutes. My legs were so excited to be bearing weight again. Afterwards I was a little dizzy. My body has to relearn how to regulate my blood pressure when I am standing.

The other new thing is that I finally got approved to be in the swimming pool independenrly (without a therapist). In theory I can now be in the pool four days a week.

I can walk across the pool, stand on the ladder (1-1/4 minutes), and do leg exercises that I can’t do out of the water. If I am sitting on the water chair and trying to straighten my legs, I can get my feet to move a couple of inches. This is an improvement from the first day, when they barely moved a millimeter.

When I tried to start this weblog a couple of years ago, I had many great plans. Now my goals are more modest. If I can manage to write on a semi-regular basis, and then actually post what I write, I will be happy.

Mid-February:

A lot has happened. My sister passed away (the other way to leave the nursing home). I went to the funeral, sat Shiva, finished the required 30 days of mourning, and returned to normal life. In some ways, that’s harder. When I’m happy, smiling or singing or dancing, it all rushes back and I start to cry. When I went to the Tuesday concert I had to keep putting my blanket over my head. I can’t go back for a while, which is probably a good thing.

April 23, 2019 = Today:

It’s Chol Hamoed Pesach (the middle of Passover). I worked in front of the ladder in PT and actually managed to raise myself a few inches off the chair. My muscles are so happy when they are working.

My friend Lena finally got taken to the ER after a week of being in pain. It totally justifies the time I went to the ER without asking the doctor’s permission (I was already at the hospital). Spending hours or possibly days trying to convince them that I needed an X-ray would have driven me crazy. My hand was badly bruised, but not broken, and I had to pay for triage. So worth it. It turns out that Lena’s arm is inflamed, which is a lot more painful then it sounds. (I had that happen a few years ago. Wow.)

It was a good concert today, Gidi Savon, who sings in many languages, and started his career doing concerts of songs in Yiddish and songs from Texas. I only cried once, when he was doing an old train song. My sister would have loved it,

Chag Sameach!

Return to the Blog

I’ve been thinking about this for awhile. Even wrote a couple of entries. Someday I may post them.

Six years ago today I entered my first nursing home, Amal BaSharon in Ranana, Israel. I was 53 years old at the time, so I was quite amused to hear the day nurse tell the evening nurse that I was young and innocent.

The first day I was on a ward for people who couldn’t talk, but when I moved upstairs, I got to experience the life of a hot chick. I was more than 20 years younger than anyone else on the ward, and that was all I needed. Men were coming up to me all day long, wanting to talk with me and offering me food from their private stash. A 90+ year old man who had the only private room even invited me to check out his bed. (I didn’t.)

Initially I enjoyed the attention and the crackers, but after awhile having men constantly approaching me got to be a bit much. I was relieved when things settled down and I could rest when I wanted to without being bothered. Still I am glad for the experience and I developed an unexpected sympathy for the trials of super-attractive girls.

Not yet.

I wrote all these ideas about what I would like this blog to be. But today I think I will just write for me. Not many posts yet, not many people following me. That’s okay. I don’t have the energy to do all the things you are supposed to do – follow other blogs, make comments, get yourself out there. It’s not that there aren’t other people I would like to follow – there are – but I can’t right now.

I believe in G-d / a higher power / fate. This thing is meant to be or it isn’t. In the meantime, the most important thing is at least to write something.

I understand why people who haven’t walked as long as I haven’t walked don’t walk again. (Good luck parsing that sentence.) There are so many things that your body forgets how to do when you spend all day in a wheelchair or in bed. I tried sitting up straight this morning. That didn’t last long. Other challenges – holding up my head, bending and straightening my legs, leg lifts, moving my legs from side to side, wheelchair walking; all these are things I could do a few years ago, but I stopped practicing and lost them. So I have to start from zero again.

At the same time I was working on hands, fingers, arms and shoulders. They can do things now that I didn’t even dream were possible when Anat, the amazing occupational therapist, was working with me three and a half years ago. For example. I am using all ten fingers to type this.

The fingers are getting tired now. Exhaustibility, one of my favorite MS symptoms. So I guess I’d better write what I need to hear:

I can imagine not being able to do this. I can imagine failing to walk again. I can imagine a day when it’s time to stop trying. I hope it doesn’t come to that. Today is not that day. But I do understand that such a day could come.

When I was trying to escape from the nursing home in the U.S., a key question was how do I know if G-d is saying ‘No’ or ‘Not yet.’ The clear limit was the airplane door. If I couldn’t get on the plane, that would be ‘No .’ Once I was on the plane, it became their problem to get me off (and on and off the next plane). I did make it back to Israel.

As for now, I didn’t fall on the floor and break bones last month when the lift broke when I was in it – it just gave an extra spin. The dramatic crash occurred a few minutes later. So I am sticking with a belief in ‘Not yet’ for now.

My fingers are toast, so it’s time to post.

Why This Blog?

*Photograph taken 11/23/2016.

I have MS. During my second stay in rehab the staff thought I was in denial because I believed that they could help me to walk again. (They thought my case was hopeless.) Every day was three hours of therapy and another argument. Would I stay in rehab or would I get thrown out and sent to live in a nursing home forever? Would I stay in Israel or go back to the U.S.? Could I really walk again? My friends kept telling me I should write a book.

So the first reason for this blog is to tell some good stories. The second reason is to share some tricks I have learned along the way:

I did walk; after rehab I spent a few months in a nursing home in Israel learning to walk better and then I got on a plane to travel to the U.S.. After only one night, I was back in the Emergency Room. I was hospitalized for a UTI, then sent to rehab and to another nursing home.

Every few days I would get another infection; they kept giving me stronger and stronger antibiotics. The infections kept getting worse and the list of antibiotics that could treat me kept getting shorter. My germs became ESBL positive, which means they were able to cut antibiotics like penicillin in half; they were considered so dangerous that I had a private room in the nursing home. I didn’t talk about it at the time, but deep down I believed I was well on the way to dying.

All this happened in 2013. I’m still alive and for the most part free of infection. In the summer of 2017 I had a serious UTI for the first time in years; the germs were not ESBL positive and responded to ordinary antibiotics. This happened because back in 2013 I was sent to an infectious disease specialist in Boston who realized that the conventional wisdom wasn’t working and suggested unconventional strategies that did work.

I want to share strategies I have learned from doctors, nurses, staff and other patients, plus a few things I figured out myself. My hope is that people reading this blog will write comments about what does or does not work for them and why.

Some of these strategies involve details of personal care which some people might rather not know; I am going to use the category TMI for such posts. For example, avoid any post labeled ‘TMI’ and ‘Number 2’ if you don’t want to see details about what might help someone who has nerve damage go to the bathroom.

The third reason for this blog is that the story isn’t over.

Just as we were figuring out how to handle the infections, I fell. After several months of being lifted in and out of bed with a crane, my muscles were too weak for me to stand. Four years later, I am living in a nursing home in Israel and still using a crane.

So I still have the same questions: Can I walk again? Will I ever get out of this nursing home? I’ve lost 30 lb.; how long will it take to lose another 100? And what about the MS? I hope the unfolding answers will make for interesting reading.