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…
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!
Yeah, I know – it’s been way too damned long since I’ve posted. Life does that sometimes.
Somewhere around March, I realized that I had fallen into a pretty bad depression. The weight gain, the impaired mobility, the inability to get the MRI I needed, the loss of several relatives and friends all served to hit me pretty hard. I started working my way out from under, and have been coming along slowly but surely.
One thing that helped is that I have been getting more social again. That started with the 25th anniversary party for two close friends. Two adventures lie therein, btw. The first was finding an appropriate gift for our friends, which entailed a trip to Eichlers, a Judaica store on Coney Island Avenue. Being a Sunday, parking was a pain, and we ended up parking around the block from the store. The Ex held my arm as we walked there, and the kind store staff found me a chair to sit on so I could catch my breath. We got the couple a lovely Havdallah set. The second was the saga of the lock. The morning of the party, I got up, got dressed (a beautiful long dress from Holy Clothing), and was checking my email when the Roomie came in and told me she couldn’t unlock the front door. I went up front to check, and sure enough, it wouldn’t unlock. Called the Landlady, who was in the Poconos. She called her dad and sent him over, so we cleared enough space by the front window to hand out our keys so he could try to open the door from the outside. No luck there. Next step was that we removed the doorknobs so we could try to manipulate the mechanism from the inside. That didn’t work.I was beginning to think I’d have to climb out the front window to get to the party. Called the Ex, who was also going to the party, and he came by. We got the Landlord’s dad to open the side gate, and the Ex came to the back door to try to push my bed forward by pushing the door open. To do this successfully, I had to try to move the 140 lb. Peloton exercise bike that sits in front of my bed. Not fun, but somehow I managed to do it. Marc got the door open enough that I could climb over the bed and out of the apartment.Then it was down some stairs, up the alleyway, then up a bunch of stairs. We got to the venue, and it was down some more stairs, which was a bit much, but I made it. The party was lovely, and while I was out the Roomie called a locksmith, and had the lock replaced properly. So we now have a properly working lock.
Since then, I have been out on several Friday dinner missions, a Saturday mission that included a book party, then a walk of about three blocks (2 half-avenue blocks and one street block) to a local ramen place we like and knew could hold a large group, and a Passover Seder that included a climb up stairs and down the same stairs. Pretty good for a mobility-impaired person who also has sciatica. In fact, these days, the sciatica is more of a problem than the heart is.
Today was my three-month cardiologist checkup. He was delighted with my blood pressure (132/80), and even more delighted to find my heart murmur has gotten a bit softer. Best of all, at some point – about three weeks ago – my ankles stopped looking like grapefruit and have started looking like ankles again. My left ankle is totally unswollen at this point, and the right one is so slightly swollen that you have to really look to see it. The legs are unswollen, too, which is nice. I also had a bit of a walk – the car service missed the turn at East 27th Street, so I had him drop me at the corner of my block, and walked the one-third of a block to my house.
I’ve been doing the Weight Watchers Simply Filling plan since the end of March and have lost 20 lbs. so far. I still have a long way to go, and I’m still annoyed that I have to do this all over again, but I can be annoyed and be working on it or I can be annoyed and doing nothing about it…I’d rather be the former, so that it gets done. I am taking advantage of their coaching program, since I was able to book my coaching sessions with my favorite lecturer. At some point, I will be able to get around enough to go to meetings, but for now, this is working, so I am happy about that.
Anyway, that’s about where things are for the moment, so I’ll be heading off to eat breakfast. Talk with everyone again soon!
Friday night a small group of us met at Moldova, 1827 Coney Island Avenue, in Brooklyn, which is one of two branches of the restaurant (the other is in Philadelphia). A look at their menu promised a lot of dishes that were essentially the same as the Middle European foods that Marc, Mark, Sue and I had had as kids, and we had recommendations from two separate people, so we were interested in seeing if they could accommodate our usual dinner group, which I think they will do quite nicely.
To quote eattheworld.com: “I like a place that has a very obvious pride for itself. Moldova is a place like this, the people here know how to run it, they look very formal yet inviting, and the food is prepared and plated beautifully. As far as I know, it represents the only restaurant serving Moldovan food in the city, and takes this responsibility very seriously.”
The lights were incandescents, the food was excellent. The service was a bit slow, but that was because they were clearly packed. However, our table of five was able to carry on conversation without yelling, even though most of the larger groups dining that night had large numbers of kids.
The restaurant gets bonus points for a number of reasons. When we arrived, our table was ready, and we were seated, even though our party was not complete. Further, an older lady was waiting for her ride, and when it arrived, three of the employees helped her to the vehicle.
Besides the lighting, one reason we tried the place was its promise of mamaliga (polenta). We got an order of mamaliga with bacon, cheese, and sour cream for the table, as well as the smoked fish platter, which had been recommended by Lisa Braun. Both were good, although the herring on the smoked fish platter was a bit drier than we expected. The butterfish and salmon were excellent.
Marc had fried fish, I tried the rabbit (it tasted like dark meat turkey), Mark had the house special (mamaliga with sour cream and bacon, Sue had the schnitzel with mashed potatoes, and Abby had the chicken. Sue and I had dessert; I opted for the walnut stuffed plums drenched in a chocolate and wine reduction, which was nice, but a bit too sweet – even for me. Sue opted for the chocolate-backed pudding, which turned out to be a fairly huge slice of cake.
If you are planning to go for dinner, especially with a group, you should call them at 718.998.2827 to make reservations.