Archive for December 2013
I’m sitting here at my computer with a lot of pain, anger, sadness, and frustration tonight. Some of it, I can talk about, some not, since I believe the person involved occasionally looks at this blog.
Mainly, I’m sitting here wanting to shove everything in the refrigerator into my mouth, to stuff it all down. But I know that that’s self-destructive in so many ways.
1. A friend’s mother passed away. I feel for my friend since she has been undergoing all sorts of turmoil during her mother’s final illness. Not much I can do to help, but I am here if she needs me.
2. A cousin of mine is recovering from surgery for pancreatic cancer. This is the cousin I had wanted to be closer to all my life, although my father managed to sabotage that, as he did relations with most of the family on both sides. Still, I am glad that my cousin and I have found each other and are talking again. He says that, so far, his prognosis is good, and I am happy about that.
3. My cardiologist who was all for doing the open heart surgery, is now backing away from it because the surgeon he wants to use, who happens to be his boss, has rejected me out of hand as a candidate based on my age and weight (or so the cardiologist tells me – I’ve never seen or spoken to the surgeon). What they want to do instead will do nothing to solve the problem or give me my life back, and I am very angry. I am planning to refuse to have a pacemaker put in, since all they want to do that for is so that they can give me more drugs that won’t solve the problem without risking accidentally stopping my heart. Further, it seems the cardiologist never told my primary care guy that he was backing away from doing the surgery –my primary care guy found out when I saw him in the hospital and told him what was going on. He agrees that I should have some say in what happens to me, and that it was wrong for the surgeon to reject me without ever having seen me in person or spoken to me. Several people I have spoken with suggest that the surgeon is rejecting me because he doesn’t want to risk his “complication rate.” I agree with this assessment, and that means I’m going to have to talk to my primary care guy about getting a new cardiologist if the cardiologist won’t find a different surgeon. For one thing, I would not want a surgeon who doesn’t want to work on me doing so. I learned my lesson about that over the hemorrhoidectomy, thank you very much.
4. I have had to rethink who I want on my Medical Power of Attorney. I need to have people on there who I can trust. Unfortunately, I have one family member that I absolutely cannot trust to do what I want, as was proven yet again during my last hospital stay. So I have had to remove that person from the MPOA. Unfortunately, that person is making it all about them. Despite having done nothing but try to get me to mistrust all my doctors, hiding my wallet and credit cards without telling me where they were being put, and letting the patient transport guys walk off with my robe (then telling me I didn’t have a robe, when even the patient belonging manifest showed I did), even though out of all the things done watching that my robe didn’t get left behind was the ONE THING I had asked this person to do, this person claims that it will follow my wishes explicitly. The person’s response to being told of being removed from the MPOA was to ask my 90-year-old aunt to find out why, and insisting that I was now totally disowned by the person. My aunt asked me what she should tell the person, and I told my aunt to tell the person to call me if there were questions. Oh, when I told the person I was removing them, I was told that all my friends would just let me die, so I was making the wrong decision, “as always.”
The thing is, I need to be concentrating on my health now, not on all this petty crap. I’ve spent most of this weekend in tears, to the point where I seem to have broken a blood vessel around one eye. I’m going to have to fight to get the one kind of surgery that will actually repair the problems I’m having, and that surgery includes taking the risk that I will survive the procedure. I am willing to take the risk – the life I have now is pretty much crap. I can’t go places, can’t walk more than half a block without having to stop, can’t do the things I’m used to doing.
I’ve never been afraid of death. And, given that this stupid heart defect should have killed me in my late teens or early 20s, I have to say that, at 61, I’ve had a pretty good run of things. But I am not willing to live this stupid half a life. The thing is, if I am going to have to fight to have the actual surgery that I need instead of crap that won’t fix any of the problems, I need to be able to focus on the fight, not on all the petty crap my one family member seems determined to drag me through.
It’s easy to say that this person disowned me, so I should now have peace. However, it’s not so simple. My father worked hard at screwing the whole family up, and this person acts exactly like he did. I have spent most of my life ignoring the crap this person spews, on the grounds that I have too few blood relatives left to look for fights with any of them. However, I am not willing to turn my life over to the control of this person, and that, apparently, is the only way I am acceptable to the person. This person feels that it knows better than any of my doctors what they should be doing with and for me, and that’s just not so. I have very good doctors: my primary care guy saved my life twice, saved my roommate’s life, and save my ex’s life. Until he started backing away from doing the surgery, I would have trusted my cardiologist completely. He was honest with me about what was needed, and about how big a deal it really is, so that I am fully cognizant of the risks involved. That the surgeon wouldn’t even meet with me before rejecting me as a candidate is unacceptable to me, and I need to find out why my cardiologist is suddenly changing his tune before I decide whether to go on with him or not.
I have a lot on my plate to deal with, and to have even a minor part of my support system ripped away is a shock to that system. I am lucky – I have my oldest friend (we met in 1972) and my ex to put on my MPOA, and I have another friend who will step up if one of them has to bow out. And I have my best friend from high school I could probably ask if that third person has to bow out for some reason. These are people I can trust to know what quality of life is for me. In fact, the third person proved that on the phone today by noting that accepting the pacemaker and the drugs would, in me, be a sign that I am giving up.
I am feeling a little better for having written this out. I am still sad, however, because I know the person causing me problems will never understand why I feel I had to remove it from the MPOA (and, in fact, it was not on the MPOA – it filled in a new MPOA “for me” while I was in hospital and got me to sign it when I had a 102.8 fever – clearly not acting toward my behalf, since It knows I did not want it on the MPOA to begin with). I don’t want to devolve into repeating myself, so I will end this here, and hope that things are better when I wake up in the morning, since I have some work that needs to be done before the New Year.
I wish all my readers a happy, healthy, prosperous 2014 that is filled with lots of love and joy.
Christmas Eve was my mother’s birthday. It was also the day my sister’s fiance had the stroke that killed him on the day after Christmas.
I just spent a week in Beth Israel-Kings HIghway Hospital for cellulitis. I woke up on Friday the 13th and couldn’t get warm. Coffee didn’t help, nor did getting under the electric blanket. I wasn’t at the shaking so bad I was dropping things stage, but with the heart defect, I figured safe was better than sorry, and had the roomie call 911. Apparently, I was running a fever of 102.8, which is pretty high, even for me. So the EMTs took me to the hospital. Unlike last time, I had a room by end of day, which was good. Roomie, my sister, and Naomi Moslow took turns sitting with me, which helped. The MRI came back okay, so there was no fluid in my lungs. Still, I felt pretty miserable.
This time, the nurses (with one exception) were all really nice. The only problem is that whenI came in, I needed some oxygen, and they chose to do that via a cannula. The cannula irritated my nose, and I kept begging them to take it away, but since the doctor had ordered it, it stayed — until I started having bad nosebleeds from the way it irritated my nose. Once they took it out, they kept monitoring my O2 levels, which were fine.
Anyway, I was in the hospital on intravenous antibiotics until Wednesday, when five different tries to get a vein didn’t work, at which point I was switched to oral antibiotics. I got out on Friday afternoon, came home, and went to sleep for a bit. When I left the hospital, I had a whole sheaf of forms recommending various nurses for the “Caught Being Great” program. That felt good.
I am feeling a lot more like myself now. While in the hospital, I caught up with my primary care guy. He agrees that I should have some say over how we treat the heart defect, since it is my body, after all. He also agrees with me that something is not right that the surgeon my cardiologist wants to use has rejected me as a poor candidate without ever having even spoken to me. We will deal with this in the new year.
Other than that, things go apace. I have writing to do. I got a winter jacket that proved to be nice and warm, even though fairly light. I am working on my professional website.
Roomie and I will be making Christmas dinner for somewhere between seven and ten people. It’s the one thing I can do on Christmas to make sure lonely friends are not lonely for a little bit, and that I can do something of value on a day when no one should be left alone unless it’s by choice. When I invited the ex, he asked if we would be doing a movie and Chinese food, the traditional way many Jewish folk in New York avoid the holiday. I told him no, but that I would order something in if it would make him feel better. He laughed.
I’m not particularly religious, although I do acknowledge being Jewish more by birth and by all the things I am not. However, the part of the world I have grown up in often looks at Christmas as a fairly secular holiday (yeah, I know, I didn’t say it made sense), and I grew up in a Christian neighborhood, so I have never had a problem celebrating both Chanukah and Christmas. When you come right down to it, I think that any chance to spread joy is probably a good thing. This year, I am especially cognizant of how blessed I am when it comes to friends. So I am happy to be able to spread a little cheer, and I always love an excuse to cook for my friends, so this is a good thing.
Roomie and I made a shopping list already, and the ex took her shopping yesterday, so we have pretty much everything we need.
At least I’m feeling like myself again. I hated feeling helpless and hopeless.