Archive for the ‘Accountability’ Category
I was hoping to have a dinner report about a new-to-us place that specializes in hand-pulled ramen and in soup dumplings, but that’s not really gonna happen tonight (although there may be a note on the order the roomie is bringing home for me).
At dinner last Friday, I was sitting next to one person who says she didn’t know she was getting the flu, which attacked her pretty violently Saturday morning. I didn’t know she was sick until two days ago. When I started getting sick on Tuesday, I just figuredit was stuck energy from all the internal growth work I’ve been doing. That happens, and you just get through it.
Wednesday, she sent me an email that she wasn’t joining us this week because she had awakened Saturday with the flu. Thursday, I had the electric blanket on “4”, which I never do, and it barely felt warm. Asked the roomie for the thermometer and, lo and behold, I had a temperature of 101.2. I called the woman and asked what the onset symptoms of her flu were, and they matched mine. Lovely. She kept insisting that I could not have gotten it from her and must have picked it up elsewhere. However, this chain of events is math that even a mathophobe like me can figure out.
Yes, I am sure that she did not intend for me to get sick. I really don’t think most people go around trying to make others lives miserable (well, except maybe my sister, who prides herself on doing just that). What is really annoying me, however, is her continued insistence that she could not have been the source of my flu.
I have an old friend, Naomi. We know each other since 1972, and have each done our share of stupid-ass things over the years, to which the other’s response has always been “I’m gonna kill you, then we’ll do lunch.” The reason this works is that both of us are willing to look at and own the stupid-ass stuff we do.
Anyway, the roomie is going to bring home some soup dumplings, some duck ramen with hand-pulled noodles, and some braised duck for me so I will be able to report on the food if nothing else.
In other news, I got a smaller rollator, and I fit into it! This new rollator weighs about 15 lbs. less than the old one. The roomie was able to carry the whole thing, in the box, from the front door to my room, and it does move easily between the rooms of the house. I gave the old one to a friend for his wife, as a backup.
So, whinge and flu aside, it’s been mostly a good week.
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.
I saw the neurologist today. I have some neuropathy in my hands and feet, which I knew. Part of it is from some arthritis in my neck, part of it is from damage to the cubital nerve (which controls the ring and pinky fingers); re my feet, part of it is from the sciatica, part from damage at the L5 S1 location (lower spine). He wrote me a referral to a PT for when I am cleared to exercise.
Naomi, who drove me, and I went to lunch at an inexpensive Chinese place that does hand-pulled noodles. We had the hand-pulled noodles with pork chop, done as a stir-fry, with lovely fresh veggies.
Tomorrow is my followup with the surgeon. I hope he is as pleased with my progress as the visiting nurse, the PT, the cardiologist, and my primary care guy are (not to mention myself).
The bad news is that I still can’t travel far enough to go to Merav’s wedding, but she noted that she would be willing to not have me dance at her wedding in order to have me around for the next 25 years (the surgeon says that my heart should now be good until around 85 years of age) or so. However, I am still on track to be recovered enough to run security at Contata, which makes me happy.
I have now seen the PT twice, a lovely young lady named Joanna. She has me doing squats and leg lifts, and walking back and forth between my room and the front of the house. The results are that I don’t seem to need my cane any more, although I will take my staff to Contata, just in case. And, today I was able to walk the half a bl0ck from where Naomi got parking to the restaurant for lunch.
What is interesting to me is that the more I am willing to be accountable for taking care of my recovery, the faster I am recovering. Mind, in this case accountability not only means doing what the PT and my doctors say; it also means being kind to myself, and not pushing myself until I drop.
So, that’s where things are at the moment.
…And likely to get colder as this new spate of polar air and snow sets in. In fact, this is a hearty soup for breakfast kind of day, which works because when I couldn’t sleep overnight, I made a big batch of soup. Not my usual formal recipe kind of soup, but a Use-Up-A-Few-Things soup. This one had leftover pork shoulder, an older bag of 16-bean soup bean mix, the drippings (minus the fat) from the pork shoulder, some farro that needed using up, a can of beef broth a can of crushed tomatoes, a can of Ro*Tel, and one tomato can of water. Came out delicious. I’m planning to – when I package it for freezing and fridging – pull the pork out of one container, puree it in the NutriBullet, then add the pork back for a thicker soup, although I like it just the way it is. Heck, it’s cold enough that I’m seriously thinking of keeping the pot on the stove, and adding things over the course of the day, like some pierogies and some kielbasa. However, I’ll probably just do the pierogies and kielbasa separately for lunch.
Mostly, I’m waiting to call the hospital to postpone my consultation with the surgeon. Their office was closed yesterday, so I left a message, but I want to confirm the cancellation, and get a new date, preferably after the end of this cold spell. One of the things I found out over the last few months is that it’s much harder to travel when it’s cold like this, because the cold is likely to trigger the asthma on top of the heart issues. UPDATE: Appointment has been moved to next Tuesday, at 2 pm.
So, to catch up on my life since the 16th…
I’ve been reading, when I can concentrate enough. One of the books I was able to concentrate enough to read was Lawrence Block’s newest Bernie Rhodenbarr book, The Burglar Who Counted the Spoons, which I enjoyed greatly. It’s no secret that Block is one of my two favorite mystery writers (the other being the late Robert B. Parker), and that Bernie is one of my favorite series of Block’s. This one did not disappoint, and I recommend it to anyone who likes a good, NYC-based tale, with a witty protagonist and cool support characters, full of sly humor.
Mostly, though, what concentration I have is reserved for things like writing press releases, editing theses, etc. I need to get more work, but right now it’s a balancing act, and I hate not being able to push myself beyond a certain point. Other than that, I’m mostly online, talking to people, so that I’m not eating my own tail over the whole situation. The mostly good news is that I have adjusted to having had to cut my sister out of my life, even though I’m still very sad that I had to do so. On the other tentacle, my fannish sisters have let me know I’m not alone. The roomie continues to be as helpful as she can – running errands for me so I can conserve energy – being my voice on the phone when my voice gives out, etc. The odd thing is that my voice seems to be coming back very slowly, in fits and starts. There was a whole morning when I sounded like myself. I am hoping that this just means that I strained something, and my voice will eventually come back totally. One of the worst things about this whole mess has been losing my voice so badly. I have a hard enough time making myself understood when people *can* hear me; when they can’t, life becomes that much harder all around.
Most of my friends were at Arisia this past weekend, which I was glad to hear went well for all of them. However, one of my Boston friends had decided that – for various reasons – she would rather skip Arisia and come and visit both me and some of her family in the area. It was delightful to see her, and I wish we could have hung out longer, but we had the whole afternoon together, including lunch at my favorite Indian restaurant (roomie, friend, and me), and then the friend driving me to the fannish party I was going to that evening, since it was on her way to her family’s place. The party went well, and Marc drove me home afterwards, along with pretty much the rest of the guests.
Sunday was pretty quiet, except for a surprise: Amazon.com delivered the cookbook I had ordered (Not Your Mother’s Slow Cooker Cookbook, by Beth Hensperger and Julie Kaufmann). Four different cooking blogs had recommended this book at different times, and I finally took the hint. I’m glad I did, too; I want to make everything in the book! In fact, I told Marc that I foresaw a lot of soups, stews, and braises in his future.
So, that’s where things are at for the moment. I’ve planned a warm pasta dish for dinner, based on a recipe I found on the Web: Northwest Edible Life’s Cabbage and Pasta with Mustard Cream Sauce. Sounds yummy, and both the roomie and I like cabbage. The roomie and I have been trying to cut down our meat consumption a bit, and this sounds just right for a hideously cold evening. Mind, we are not cutting meat out entirely, and I just downloaded a meat recipe from a friend that I will try when we can next get to the local market. One good thing about our local market, Silver Star on Nostrand Avenue, between Avenues Y & Z, is that it started out as a meat market/butcher. This means that the meat we get there is nice and fresh which is a wonderful thing.
See all of y’all in a couple of days, hopefully.
I did get a call from my cardiologist today, with a referral to a surgeon he knows at Mount Sinai. I asked him about the two my friend the nurse recommended, and his flat response was, “I don’t know them.” My answer to that was that it sure couldn’t hurt for him to get to know them, just in case.
So, my next things to deal with medically are:
1. Set up appointments with the surgeons (I need to see if I can get referrals to the two that my nurse friend found, to deal with the insurance end of things).
2. Set up an appointment with the neurologist that Dr. K. referred me to re the cubital tunnel syndrome and the foot neuropathy.
3. Get a referral from either my internist or my cardiologist for an ENT guy to see what the hell is really wrong with my voice.
4. I know I have a tooth that will eventually need to be root canalled. Since the dentist I got from Medicaid’s only benefit is that he is four blocks away, I need to see if I can get dental coverage from AARP, so that I can go back to my really good dentist in Manhattan.
And, once again, I want to thank all my friends for stepping up to help, no matter what form your help takes. You guys make it hella easier to keep fighting.
Okay. Just got back from the cardiologist, and here is the latest.
I am not the ideal candidate for open heart surgery, or even for the ablation. We already knew that. My age, my weight, yadda, yadda…
The other problem is that I am presenting oddly. For one thing, my heart’s septum distortion is 15. Normally, people with the amount of disability I’m having present with a much higher distortion. For another, the relatively small amount of drugs I am getting are slowing my heart down to 55. So they cannot presently give me greater amounts of drugs because there is a risk of slowing my heart down too much. Dr. S. has found a surgeon for me, but the surgeon has the same issues that Dr. S. and I both have about me undergoing surgery at this time.
The current plan, therefore, is to set up an MRI to doublecheck the amount of distortion, because there is a possibility that the echocardiogram under-represented that. Dr. S. is also changing out the 25 mg of carvedilol (twice a day) for 50 mg of Metoprolol (twice a day). After we get the result of the MRI, he will possibly schedule a CAT Scan of the head, neck and chest to see what is going on with my voice. Once we have those ducks in order, he will likely have a pacemaker put in, so that he can give me larger doses of some of the meds. My next few weeks will clearly be filled with doing some internet research, and making up some more questions to add to the list I’ve been keeping.
I know that caution is warranted. I know that I’m really glad my doctor is conservative in his treatment plans. But, dammit, I really want my life back. The problem is that, given how un-ideal of a surgical candidate I am, the big risks with open heart surgery are that a) I might not survive the surgery, and b) I might not be incredibly functional afterwards because of the issues that make me a less than ideal candidate. Dr. S. and I both agree that if stubborn were the major thing I need I have that in spades, but we also know that open heart surgery — especially when it means shaving off some of the heart wall as well as fixing the valve — is a big, damned, risky thing.
Meanwhile, I’ve been dealing with it about as well as possible. Marc, Abby, and a host of other folks make sure I get out of the house at least once a week, so I don’t just sit and obsess about how little I can do. I have been taking on as much work as I can, because work is always a good distraction. I’ve been reading, and even logged back into a couple of social games on Facebook, so that I’m not becoming too isolated.
I know I need to lose weight, but I am having trouble getting over myself and doing what I know works. I’m really resentful that I have to do it all over again. It took me two years to do it last time, and I was healthy and could walk a lot then. The gods know how long it will take without my being able to walk the way I used to. Honestly, the weight depresses me more than the heart issue. I was born with the heart issue and could not have done anything about it, because – until it triggered – no one even knew it was there. The weight – well, I’d lost most of it before I crashed and burned, and then, when I couldn’t go walking anymore, it all came back. So now I have to do it again, without the one exercise I love best in the world. I really need to get over myself, and go back to Weight Watchers, or at least start doing it at home or something, but I am just so frustrated about the whole issue. It’s the one whole part of this thing that makes me want to run away and hide. I’m trying to figure out how to get myself back to doing Weight Watchers, because I know that if I don’t go into it committed to doing it and doing it right, I will half-ass it and just be setting myself up for failure. And that’s the one thing I don’t have the option to fail at this time.
So, that’s where things are at right now. If any of you who know me well enough have ideas on how I can get over myself and get my ass back in gear, please let me know. Every day I can’t manage to do it makes a real difference at this point.