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.

A new beginning.

בס׳׳ד

The bill arrived and was automatically paid. This tells me that I have had this blog for more than a year; clearly it is time for my second post. Also, it is time for me to settle down and just write. So I hope what comes out makes sense, but if not, so be it.

Recently I’ve been thinking about anniversaries. Five years ago I was in rehab, fighting with the staff and getting ready to enter my first nursing home. Now I am in my sixth nursing home, I’m still fighting with the staff, I’ve been here for two-and-a-half-years and have no plans to leave any time soon.

A psychologist told me that what I thought were hysterics technically are called ‘outrage bursts.’ I’ve had quite a few outrage bursts since I’ve been living in institutions. I had one today. There’s a lot to be outraged about.

(About the one today – boy, am I in trouble. I called the head nurse bad names as I was leaving, which she heard. Oops. Tomorrow will be awkward. I’ve already been spoken to this evening by two aides who were present at the scene. They’re petty mad at me, which is only fair, since I was furious at them.)

One difference between rehab and long-term care is that people in rehab tend to be more polite to each other. You are only together for a few weeks or months, not long enough to abandon courtesy. In a nursing home it’s like family (or maybe jail): you are always together, and for years.

It’s time to eat dinner, so I’m going to post this now.

4 years ago today: my first nursing home.

Picture me 4 years ago: I’m 53, just finishing my second stay in rehab. I’m in Israel. I have multiple sclerosis (MS), complicated with chronic bladder infections (UTI’s). My first rehab had been great: really tough, but I left walking better than I had in years. I could even climb stairs. Then I fell and broke a bone in my foot. After it healed I thought, ‘Hey, go back to rehab, learn to walk again, no problem.’ Right.

My ticket to rehab is another UTI. I arrive sick, weak, deconditioned. The staff think there is no hope. They think I am in denial. “Diana, you don’t realize you have a progressive disease.” They sincerely believe the best thing for me is to go into a nursing home. To stay. Forever.

My great-grandfather spent the last 20 years of his life in a nursing home (he lived to be 103). I can do the math: 103 – 53 = 50 years. Not if I can help it.

They have 3 weeks to go through the motions until they can be rid of me. They don’t say this, but I know. No one likes to work with hopeless cases.

I don’t think I am in denial. I say “maybe.” Maybe the MS is worse and therapy won’t help. But maybe it will. The only way to find out is to try.

People don’t like to hear ‘maybe.’ We argue every day. One of the things we argue about is my walker. They insist that I use their therapeutic walker. I think theirs is harder to use. My walker just sits in my room.

After two weeks, I’ve had it. I grab my walker on the way to therapy. Pushing the walker in front of my wheelchair, I roll down the hall. Somehow I maneuver it and me on and off the elevator, then back down the hall to physical therapy (PT). No one says a word.

My walker sits there while I do PT. It sits there while I do occupational therapy (OT). It sits there while I do more PT. Finally, Elan asks if I want to try it. I nod my head, “Yes, please.”

I stand up and walk down the hall, leaving my wheelchair behind. It marks my progress: I could walk!

I can’t walk today. On March 4, 2013, I entered my first nursing home in Ranana, Israel, not to stay for good, but to see how much better I could get. Flying back to Massachusetts 4 months later, I got sick again. Fortunately, the ER doctor (in Worcester MA) had studied in Israel and could read my discharge papers. That’s just one of the miracles that has happened.

I’ve been in 6 nursing homes, 3 rehabs, and 4 hospitals, and I’m still not done. My friends have been telling me I should blog about my experiences and what I have learned. I am posting this today, to celebrate my 4^th anniversary. We’ll see how it goes from here. Thanks for reading