Archive for the ‘Life Happens’ 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.
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!
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.
My pre-surgical clearance work is set for Monday, 24 March, at 10:30. I will be getting a ride in and a ride home.
My surgery is scheduled (should nothing else go wrong) for Wednesday, 26 March, time TBD. The location will be Mount Sinai Hospital, in Manhattan. I am told that I will be in CCU for a few days after the surgery, with very limited visiting, and I probably won’t be up to talking on the phone a lot. If you are local and want to visit, I suggest checking with the hospital for visiting hours and durations or if you know Marc G. or the roomie, call them. After that, I will be transferred to a regular room for several days. Beyond that, it is probable that I will have to go to a rehab place for a few more days, and have some aid at home after the rehab. Tentatively, recovery is supposed to take from six to eight weeks.
I’m mostly holding up okay, although I am scared (which makes total sense – I’m about to let someone literally mess with my heart, and they will have to separate the sternum to do so).
Here is a URL for some information on the surgery I’m going to be having, just in case you want to find out a bit more. Not sure how much I will be blogging between now and going in for the surgery, although I will try to write about the pre-surgery stuff on Monday evening.
To all my friends, I love you; to all my readers that I don’t yet know, I value your taking the time to read this blog; to any family reading, I love you. While I truly believe I will come through this and recover just fine, I did not want to close without saying it – just in case.
See you all Monday.
I have a tentative surgery date: March 26th. That’s the good news.
However, that may need to be put off for a bit.
See, I had this cellulitis infection occur in December, and again in February. My friend Marie the Nurse (as opposed to Naomi the Nurse) reminded me that this could leave me in a very bad position with regard to surviving the surgery, but subsequently ending up with a staph infection. Her words:
“Something has been bothering me, call it a gut feeling. You had cellulitis a few months back. What bacteria caused it? If you don’t know, it is imperative you find out before surgery. Let me know as soon as you find out.”
“You need to see an infectious disease specialist before surgery. I forgot to mention this last night. Primary care people and cardiologists don’t always know the most current stuff as it is not their field. Infectious disease is a highly evolved and fast moving specialty. Seeing one may save your life.”
“The important question is has it reached the bloodstream in any way. You want to also know where it is hiding in your body. Frequent colonized sites include the nasal passages, the armpits, the groin and more recently the vagina and rectum. These areas should be swabbed and cultured. This is why I am imploring you to see an infectious disease specialist. It would be awful to survive the surgery and then die of MRSA sepsis or MRSA pneumonia. The surgery you will be having is highly invasive and therefore puts you in the crosshairs for an internal MRSA infection – which will be extremely hard to treat if it is possible to treat it at all.”
So I am seeing my PCP today to acquire a referral to an infectious disease specialist. Of course, the problem then becomes when can I get an appointment with the specialist, and can we get the results back in time for me to have surgery on the 26th.
Meanwhile, I never realized how much paperwork is needed to take care of making sure that the people I want taking care of things for me while I am in the hospital, or after I die, will be able to do so. I have printed out a will, and a statement appointing one person to be responsible for my remains, and I have made sure my Medical Power of Attorney and my Advanced Directive are in order. Now I have to get copies made, and – in several cases – round up people to do signatures in front of a notary.
Of course, while I am doing all of this, I found out that Nelnet had somehow not notified me that it was time to re-apply to keep my student loans deferred, and that it’s also time for me to recertify for Medicaid, because if I don’t do that in the next few days, it will come up while I am in the hospital. I did the Nelnet certification yesterday, and will do the Medicaid stuff this evening, since I need more documentation for that than for the Nelnet stuff.
Got home Friday, but was really too tired to think to write.
The thing is, neither my primary care guy, nor I, wanted me home until the cellulitis was thoroughly licked. However, the infectious diseases guy decided to switch me from intravenous to oral meds. Once that happens, there is no need for a hospital bed. As my physician, my primary care guy wanted to keep me in; as a hospital administrator, he’s kind of bound to follow the hospital’s policies, rather than fighting them. So, I’m home, on two antibiotics, and in my own bed again. OTOH, the food at home is a hell of a lot better. Follow up appointment is in place already; so I just have to reschedule the dentist, and talk to him about his timetable for the needed dental work, so I can then schedule the open heart surgery.
Of course, given that things often don’t run smoothly for me, I was not surprised when I woke up this morning with all the symptoms of a cold. given the two antibiotics, I wasn’t sure if I could use my standard cold remedy (Coricidin HBP Cold & Flu) safely, but it being Sunday, I knew no one is at my doctor’s office. However, I had downloaded Doctor on Demand, the new mobile “connect with a doctor” service started by Dr. Phil McGraw and his son. While the normal co-pay for the service is $40 for a 15 minute visit, until the end of February, all calls to the service are free (you do have to give them your credit information, though). I called, was assigned to a doctor within about 20 seconds, and the doctor not only answered the questions I had about using the cold meds with all the other meds I’m taking, he was able to give me a little reassurance about where and with whom I am having the open heart surgery done. Again, I don’t expect to be using them often, because I do have excellent Real Life physicians, but I can see where this is a very useful backup for when those physicians are not available. It can be downloaded for both iPhone and Android devices, and – whether you like or hate Dr. Phil – is a useful thing.
Other than that, not much is happening this weekend. I am being kind to myself by trying not to overdo things.