Food and Weight: An Ongoing Journey


I have now lived through another presidential election. It has had its moments of glory, such as being able to vote for the first female presidential candidate of a major party It has had its moments of blindness, like a ton of millennials and others throwing away their votes. It has had its moments of hope, such as listening to Michelle and Barack Obama speak about the future. And it had its moments of shame, as various states were called in favor of a candidate who has shown himself to be one of the most flawed people ever to run for the office.

It is now over. Donald Trump has been elected. Hillary Clinton has conceded. Trump now claims that he will unify the country. I don’t see how he can do so, given the things he has said about so many different groups of people. I admit to some baggage here. As a native New Yorker, my opinion of our new President is slightly lower than my opinion of the late Robert Moses.

I do know that every new President has a learning curve, during which he or she finds out that the powers of the office are not totally unlimited, and that one has to negotiate with others. I also know that, no matter how good or bad Trump turns out to be, if he does not learn, he is likely to be a one-term president.

I think the next four years will be harder for many of us than we were hoping. I expect that important things will be destroyed by the new President, the still Republican Congress, and a split Supreme Court. David Gerrold has an excellent post on Facebook about what we are likely to lose and why.

What many people are refusing to understand though is where and shy this happened. They did not understand how many Americans are frustrated that neither party seemed to be listening to their concerns. They did not learn the lesson of Weimar Germany, where people who were frustrated allowed an evil man to come to power.

For the next four years, we will have to deal with the results of the willful ignoring of the frustrations and issues of people who feel they have lost their way of life. As my mother used to say, “Those who don’t learn from history are doomed to repeat it.”

Am I scared for myself? Yes, some. I am 64, Jewish, disabled, and poor. Will I survive this president? Most likely. More than afraid, though, I am sad that Americans seem to choose to not learn from history, Heck, I’m sad that many Americans don’t even know the history of this country. I’m disappointed that after years of fighting for progress, and toward the ideals of our Founding Fathers, many people have chosen a leader who seems hellbent on tearing down that progress.

I am not screaming for armed revolt. I am not planning on running away. I am planning on surviving the next four years, and then working to ensure that we elect a President whose goals and values are closer to mine. I will also try to remember that this election was largely a revolt by the citizens who felt that our leaders were not listening to their needs and issues, and that even as illustrious a Founding Father as Thomas Jefferson recommended revolting when the country’s leaders were not listening to the people they were elected to serve.

I’m not sure any of this is making sense. It’s 4:29 a.m., and I am mostly trying to frame my thoughts as to how to deal with the bitter-to-me loss of Hillary Clinton and the Democratic party.

May whatever Deity you believe in sustain you through the next four years.

 


Replying to a comment in my last post got me thinking about the music that has shaped my life.

As anyone who knows me for more than ten minutes knows, one of the two life regrets I have is that I can barely carry a tune on my own. However, I have been a lifelong music fan. (I think the first song I remember hearing on the radio was “Venus,” sung by Frankie Avalon – yes, I AM that old; live with it.)

I was hooked. Not just on the song, but on the way the words and melody fit with each other, the way the sounds came out, the harmonies…. I still am hooked on music all these years later.

As I grew older, I found that the songs I loved had certain characteristics:

  • Often, the singer had an unusual voice
  • There were complexities in the arrangements – harmonies and counterpoints and descants
  • It moved me just by its magnificence
  • It had words that rang true to some part of my life
  • It had something in it that helped me cope somehow with some part of my life or some issue I was struggling with

Fortunately, my parents also liked music – chores were done to the Texaco Sunday Opera in the background; Dad liked pop music, and was often the one staying up late with me to watch the late night music shows. My Grandma was a fan of The Monkees (long story – ask me elsewhere about that). Mom loved musicals and show tunes and musical comedy such as Danny Kaye, and Allan Sherman. The Beatles hit the US when I was in 5th grade, and their excellent lyrics hooked me even more.

When I got old enough, I started hanging out in Greenwich Village – an excellent place for someone who loved music. There, I fell in love with Richie Havens, Raun MacKinnon, Laura Nyro, David Bromberg, Weeden & Finkle (later Finkle, Weeden and Faye), Christine Lavin, a cappella music, Buzzy Linhart, Eric Frandsen, and so many others.

Then prog rock came along. It had all the complexities I loved, plus Chris Squire – a bassist who often played top line leads with his bass. It also has Phil Colllins and Carl Palmer (I love a good drummer – always have) And brought me more to listen to jazz and classical music.

My taste in music has kept expanding as I’ve grown. To this day, I still hear new stuff and fall in love with it. My friend Gundo can tell you about the first time he showed me the video for “Wheels” by the Foo Fighters. I pretty much fell off his couch when it was done. And Marc can tell you about the time at the Nassau Community College Folk Festival I first heard Richie Havens do an a cappella cover of Pink Floyd’s “On the Turning Away.” I was literally left speechless. Megan could tell you (if she was still alive) about the first time I heard Tom Paxton perform “The Last Thing on My Mind.” Sue can tell you about how watching the 25th anniversary PBS showing of “Les Miz” not only left me speechless, but gave me two new singer obsessions: Alfie Boe and Norm Lewis.

That said, there are songs that have shaped my life. Sue and Marc have seen the looseleaf where I’d been copying lyrics since the first time I saw “Fiddler on the Roof.”

There are all sorts of sources for those songs, so I will list here some of them, in the hope that you may know and feel the same about them.

  • Follow – Richie Havens
  • On the Turning Away – Richie Havens a capella version
  • You’ve Got to Be Carefully Taught – from South Pacific
  • If I Loved You – from Carousel
  • No Time At All – from Pippin
  • If I Never Spend a Morning Without You – Andy M. Stewart and Manus Lunney
  • Is A Puzzlement – from The King & I
  • Corner of the Sky – from Pippin
  • The finale of the Firebird Suite – Igor Stravinsky
  • Video – india.arie
  • I’m Still Here – Stepehn Sondheim (as performed by Elaine Stritch)
  • Ritual (Nous Sommes du Soleil) – by Yes
  • Run with the Fox – Chris Squire
  • Too many Paul Simon songs to single any out
  • What Makes you DIfferent (Makes You Beautiful) – Backstreet Boys
  • Too many Christine Lavin songs to single one out
  • Circle of Fifths – Raun MacKinnon
  • The Last thing on My Mind – Tom Paxton
  • Most songs by Allan Sherman
  • Most songs by Tom Lehrer
  • Waving Flag by K’naan
  • Take me to the Alley by Gregory Porter
  • Bring Him Home – from Les Miz
  • Way too many other songs to enumerate

So, these are some of the songs that have shaped me in one way or another, and why music is so important to me.


Sigh. I know, I know. It’s been way too damned long since I’ve even tried to write anything.

I do have a good excuse, though. I had spinal surgery (nerve decompression and laminectomy from L3 to S1) on 27 September, and sitting up to type has been more than I could do for a long time.

One of my conditions for letting the surgeon have at me was that my rehab would be at home; my six weeks in a rehab over the late spring/early summer convinced me that I never want to be in a rehab/nursing home again. Fortunately, my surgeon, the most excellent Soriaya Motivala, believes that you make more progress at home, and faster than in a rehab, so that was no problem. Once the infection was cleared up for good (I had to wait a month after the stint in the rehab to make sure it was all gone), everything – except me – moved pretty quickly. I saw Dr. Motivala in early September, and we set up the surgery date.However, her assistant, the otherwise wonderful Jennifer, forgot to tell me that now that I was a cardiac patient I would need more than just a clearance from my primary care guy. This meant that on the 16th I got a call from the hospital noting that none of my paperwork had come in. So, I then had to set up all of the clearances except my primary care guy (who I had seen the day before). Between Naomi Moslow and the roomie, I made all the clearances in time, which was amazing.

The surgery took place, as planned, and I’ve been recovering since. I was released from the hospital on 1 October – just in tie for the High Holy Days.

Unfortunately, due to the need for the surgery, I missed a lot of stuff during the summer/early fall, including a wedding, a funeral, and – most important to me – the dedication of the Torah that my cousin Mitch’s synagogue had commissioned in his memory. I’d really been looking forward to that, but it was two days before my surgery, and I realized that there was just no way I could do a ride up to Mount Kisco, sit through the ceremony and the meal after, and then ride back. Since I didn’t want to take attention from the ceremony, I stayed home, instead. This coming Monday, I will be missing the funeral of a fannish acquaintance for the same reason. I have spoken to one of the friend’s kids, and since he’s also had similar surgery to mine, he understands why I won’t be there.

I have to admit, the healing process has been much slower than I would like, which I attribute to my weight as well as my age. Let’s face it: you just don’t heal as easily at 64, while carrying a lot of extra weight, as you do at 24 while carrying much less extra weight. I have not given up on relosing the weight, however; to date, I have dropped 64 lbs. I still have a ways to go to reach my goal, but I will get there. It’s been an even more interesting journey this time, since I decided when I rejoined Weight Watchers, that when stuff came up, I would deal with it, rather than just brushing it aside for later. I also made a decision that seems, in retrospect, to be one of the smartest decisions I’ve made around weight – since I am not expending anywhere near the number of calories I used to when I could go walking every day, I cut down the amount of food I was eating proportionately.

I got a huge piece of the puzzle of me the other week, and I’m still processing how to deal with it. I had ordered a lamp, and it needed different bulbs than the lamp I was replacing. My ex went off to get the proper bulbs, and I was lying in bed crying. The roomie said to me, “Deb, it’s okay. It was just a stupid mistake.” My response, which I never expected, was, “But I’m not allowed to make mistakes.”

Now I know that sounds ridiculous, but my father used to beat the mess out of my sister and me if we made mistakes, no matter how small, so I had apparently internalized this, and carried it with me for my whole life. Now that I know it’s there, though, I can work on reminding myself that I AM allowed t make mistakes. I can also give thanks that while I carried this around for most of my 64 years, I don’t have to carry it around for my 65th year.

In other medical news, and this relates back to the weight a bit, my doctors have finally adjusted my blood pressure meds to reflect the weight loss. The industrial amount of diuretics they had been giving me were so extreme that I was totally dehydrated, no matter how much liquid I drank. For a while, the doctors were so pleased with my readings that they were weaning me off the drugs at the rate of one per visit, but when it took the cardiologist three tries to even find my blood pressure, they decided to cut all but one of the blood pressure meds. We are all still watching my readings (my cousin the doctor suggested I get a home monitor, so I could take morning and evening readings and show them to my primary care guy), but so far everything seems to be okay. As I rehydrated, I gained a little weight, but my legs now look like legs instead of bones covered with skin.

So, on the whole, things are improving – even if it’s not as fast as I would have it happen.On the other tentacle, one thing I learned after my heart surgery in 2014 is that it remains important to be kind to myself. In this case, that means listening to my body and doing things when it is ready to do them, rather than trying to hurry things up.

I will try to write more regularly again, but I am making no promises at this point. I am hoping to write at least once a week, but it depends on how well sitting up goes on any particular day.


Got home on Wednesday the 26th, to much less than an ideal situation. For one thing, the roomie hadn’t changed the cat litter, and the place reeked. I sat down at the kitchen table, and the roomie went to get cat litter – and left me alone in a chair I discovered was too low to give me the leverage needed to get out of it. She also slammed out of the house, leaving my phone in my purse in a different room, so I couldn’t call for help.

When she got back, I managed to get the chair over to the kitchen sink, but when I tried to pull myself up the chair started sliding back. Thr roomie reacted wrong, and far too slowly, so I ended up flat on my behind on the floor. We had to call 911 to get me up, which their EMTs did easily once they got there, using one of the old dining room chairs (a bit higher than the new ones).

The rest of the day was pretty uneventful, thank the gods. Thursday was also uneventful, other than a visit from the visiting nurse so my case could be officially opened. He also decided that the dressing where the PICC line had been could finally be removed – a great relief since the Tegraderm patches were irritating my skin. The bad news was that I ended up having to postpone my follow-up appointment with my PCP because I could not confirm that I would have an aide present to help me get there and back. Unfortunately, my PCP is on vacation until August 8th, so that means a really long time until my follow-up appointment. Since the nursing home/rehab took it on themselves to change my medications a bit, this means I cannot check what they did with my PCP until then.

I have ordered some equipment through vendors on Amazon: a walker similar to the one I had at the rehab; a blood pressure monitor; a toilet seat riser (for better leverage when getting off the toilet); and a bedpan for emergencies.

I can get in and out of my bed, although it takes a bit more energy than I am happy about. Still, the major issue seems to be that my hamstrings are taking their sweet time in restretching to a usable position. Since PT and yoga should take care of that, though, I am not *too* worried about it.

Still, it’s good to be home. I have my stuff, and the cats, and my bed is a heck of a lot more comfy than the one in the home/rehab. Visitors and calls are welcome since I’m not really mobile yet. I expect to get back to doing the Friday dinners as soon as I can be sure of being able to get out of restaurant chairs.

I finally got to weigh myself for this week on Saturday. I was pleasantly surprised to find my weight was 230.2 lbs. Given that I knew already that the previous weight (at the home, with a not-properly-charged lift scale) was wrong, this was not exactly a surprise but was pleasant nonetheless.

So, here is a toast to being home, and to future progress!


Well, it’s been a while since my last post, but I’ve been trying my damnedest to do what’s necessary to get the hell out of this rehab and back to my apartment. I miss the cats; I miss the Friday dinner group; mostly I miss being home where I can be comfortable.

I am now capable of getting around a bit on a walker, but I really need to be able to use just my cane to get about again, so I’m working my way toward that.My PT these days is mostly concerned with getting me to use the walker more, given that I pretty much refuse to use the wheelchair for anything but the occasional transport to and from the “gym.”

The food here is pretty much still inedible, so the Roomie and Naomi have been bringing me mostly healthy stuff to eat. Naomi even found two huge jars of artichoke hearts and another two of hearts of palm for me. As of the past Thursday, my weight is down to 242.6. I’m pretty happy about that, you can imagine. I had a great session with my coach, Robert, on Friday. One thing he acknowledged is that my action plans have been getting more specific as I am digging deeper.

So, that’s about it for now. More as it happens…

 


Onward

by Chris Squire
recorded by YES on their Tormato album

 
Contained in everything I do
There’s a love I feel for you
Proclaimed in everything I write
You’re the light, burning brightly

Onward through the night
Onward through the night
Onward through the night of my life

Displayed in all the things I see
There’s a love you show to me
Portrayed in all the things you say
You’re the day leading the way

Onward through the night
Onward through the night
Onward through the night of my life

Onward through the night
Onward through the night
Onward through the night of my life


 

This is the song that is going through my head after what can only be described as a day of being tested at every turn.

This entry is something of an update to the last one, as well as a note on yesterday.

On the 27th, I had a meeting with the heads of PT and Nursing, as well as my social worker. Found out a few things that the hospital hadn’t told me. One of those things was that at the end of my stay here I would not be sent back to the hospital for reassessment, as the hospital had told me, but would be sent home – with home care – for at least a few weeks so that they could make sure the infection is really gone for good. Not fun, and it means that my whole summer will probably be shot dealing with this. As I noted before, however, if it means getting real mobility back, it’s worth it.

I was also told that the reason the home care guy called the roomie and my medical executors is that he needs to talk with the folks who will be my main support system while I am at home. So I need to have them call him back, and soon.

I have been making progress, though. I can just about fully sit up off the left side of the bed, without using my cane to help. Not sure how far I can go on the right side yet, but I will keep working on it. I can also raise the head of the bed to almost vertical, and stay there for a bit before the pain sets in. This is important because I need to be able to stand before I go home, so I need to build those muscles up.

Things have also been coming to a head with a close friend who has been ignoring her own health issues. I spent much of the last two evenings trying to get her to see sense, and I am now leaving it in God’s hands. I love this friend dearly, but I need to take care of me now, so that I am able to care for others when needed.

Wednesday started with it taking almost two and a half hours to get someone to disconnect the IV, and rapidly continued downhill. My glasses frame broke (the roomie is bringing my spares when she comes today); meds were delivered late all through the day; friend who was supposed to bring dinner had neither shown up or called by 8:30 pm, so roomie went to the fast food place across the street for me; had a very rare (for me, anyway) attack of gas and diarrhea, the friend with dinner showed up about 11:45 pm; and – finally – when I picked up my beads for meditation, they broke in my hand. (I was able to recover all but one bead. Roomie is bringing a replacement bead, my needles, and some thread later, so I can fix it, and I’ve ordered a new one online.) This was about ten minutes after I had sent the friend home, so I had to try to find the beads while lying mostly flat. Found all but one, which was pretty good.

I am trying to look at this whole day as a day of being tested, rather than as a day filled with frustrations. It’s not the easiest switch in perception to make, but it is one of the things I am working on as part of my goal to getting back on my path. I may not be able to hold that perception for very long, but at least I am learning to try to make the distinction.


On June 2nd, I went to the ER for gastroenteritis. Was discharged on June 6th, took the roomie to Randazzo’s for lunch, then we headed home. Tuesday I was fine. Wednesday I had some pain, but no more than a typical sciatica flare. Thursday, June 9th, however, I literally could not get out of bed.

The roomie tried to help, but it just wasn’t happening. Roomie called 911, and warned them that there was no way a gurney could navigate the turn into the foyer and living room. The EMTs got there pretty quickly, but I was in such horrendous, screaming pain that it took the three of them almost half an hour to get me into the stair chair they brought. After that, getting me onto a gurney was relatively easy, and off we went to Mount Sunai – Brooklyn (which used to be Beth Israel – Kings Highway). Spent a couple of hours in the ER, had X-rays and a CT scan and was admitted. My primary care guy came by and gave me the bad news: In addition to the sciatica, I had nerve damage at various spots between about L3 and S1, severe degenerative arthritis in the same area, disks in that area were crumbling and I would need spinal fusion surgery and, to top it all off, there was some inflammation that needed investigation before they could do anything to remedy the situation. My doctor and the infectious disease doctor explained that they needed to do a bone biopsy (nothing to do with cancer – just taking a core sample for analysis), because if the infection had hit bone, treatment would be different.

Sure enough, it had hit bone but was still at a treatable stage. Then I got the worse news…I would have to get four to six weeks of heavy duty IV antibiotics to completely kill the infection. This meant a PICC line would be put into my right arm, and I would be transferred to a nursing home/rehab for the time needed to kill the infection. So I looked through their list, and talked to the ex’s wife (who had experience with a number of them), and submitted my choices. Was turned down by all but my last choice – allegedly because of the cost of my medications. (One of the meds costs $152/dose, and I can’t use the thing it can be swapped with because I’m allergic to it.

The transfer to the rehab was all screwed up. First, I was told on Thursday that I would be discharged on Friday. Half an hour later, I was told that the ambulance woul be there at 6:00, and I should be packed and ready to go. The roomie packed my stuff and we waited…and waited…and waited some more. The ambulance finally arrived at 8:15, they loaded me, the roomie, and my stuff and off we went to the rehab. Got there about 9:15 pm, to find that even though they had said my dinner would be waiting, there was no food for me and the kitchen was now closed.

Then they said they would have to weigh me. Unlike Mount Sinai, which has beds with scales built in, they weigh people by using a Hoyer lift – basically, they put you in a canvas sling, attach the sling to a mechanical lift and haul you off the bed. This was more than problematic, because  the way I was on the lift bent my spine right where all the damage is, so they couldn’t get an accurate weight for me. Then I found ou that though I was supposed to be on a rehab floor, they had put me in with the nursing home patients, including one particularly crazy lady who talked without stopping from the moment she woke up. She was apparently a known problem to the entire staff because if you mentioned her name the staff would roll their eyes.

Then it took me three days to get someone to change the dressing for the PICC line, which was now falling off.

Finally, Monday morning, I was transferred to the rehab floor. The room I am in is far too small to hold two patients, but my roommate here is a pretty nice person, so we are managing. The food here is pretty much inedible, so the roomie and another friend are bringing in food for me.

Then there are the PT folks, who are trying to force me to do things like sit over the edge of the bed, and refuse to understand that I can push myself into a sitting position, but that when the pressure hits my “sit bones” it puts me into screaming pain.

Another annoyance here is that when they need info about me, they don’t ask me, but call the ex, the roomie, and Naomi instead. Of course, my friends tell them to ask me, but it’s just one more annoyance.

Anyway, the upshot is that I will be in the rehab until mid-July, then I get sent back to the hospital for reassessment of the problems and to determine what sort of spinal surgery I will need. After the surgery there will, no doubt, be more rehab, so my summer is pretty much shot to pieces. On the other hand, if this all gets me my mobility back, it will certainly be worth it!

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