Monday, June 05, 2017

where is support for my heartbreak?

For at least a year, I've been telling my doc -- pleading with her -- that my left knee was damaged and walking was increasingly painful. She shrugged it off. Then she ordered a knee x-ray only when I begged and then she dismissed the x-ray. And my ability to walk has grown worse and worse. Add to the painful, limping walking, I have been dealing with, until February, undiagnosed heart disease. Walking became almost impossible. If I sucked up the pain and limped along, I would quickly grow out of breath and too fatigued to go far. To illustrate, my pharmacy is 1.5 blocks away and I dread the 3 block roundtrip walk.

Well, the heart disease finally got noticed when I reported, in February, that I had been barely able to get to a doc appointment. All I have to do, to get to my doc's is walk a couple blocks to BART, take the subway to the next stop, drag myself through the BART station and take an elevator from inside the station up to my doc's office and I still barely made it. When I told her "I could barely move to get here, I haven't felt this wiped out side I was pregnant, had hyperenemesis and was hospitalized three times, twice for a week and once for two, to be fed intravenously. I could keep nothing, not even water down, and I was the most exhausted I've ever been. Now I am that exhausted and not pregnant.

That got her attention. She ordered an EKG immediately, diagnosed atrial fibrillation, told me to go to the hospital. My two hospital stays each were their own version of hell. For reasons beyond my comprehension, most hospitals in the Bay Area treat type one diabetics the same as they treat type two diabetics while in the hospital. I got no insulin on the first visit, even checking myself out around 10 p.m. when some doc who had never even spoken to me, decided I didn't need my nighttime baseline insulin -- which gives me a baseline of not-enough-insulin delivered in some kind of miraculous delayed dosing. Without that baseline, I feel sick and I already felt very sick from the bum ticker.

So I checked out against medical advice. But it didn't take long for me to realize my heart needed treatment. Once I became aware I had heart problems, my longstanding and expanding fatigue and breathlessness made sense.

So I went back, to another hospital, and was treated by an incompetent hospitalist who not only denied me insulin for five days (and I lost over 20 pounds in those five days cause without insulin my body cannot metabolize any food) and the bitch even write in my discharge papers that I should stop using insulin. say what?

Sure I am aging but exercise has been one of my strengths. I have been a lap swimmer nearly all my life. But I became so sick, with no diagnosis, that I couldn't get to the pool. I just couldn't get there.

Even after I got my doc's attention for my heart, and now that I have a cardiologist tending to my heart issues, so my heart is stabilizing, my left knee has become increasingly debilitating.

My doc said she'd prescribe a mobility scooter but it would take at least a year to get it approved.

I was watching myself growing increasingly isolated, doing almost nothing that requires me to walk (everything does!  sometimes just going to the elevator, riding down and getting to front door of my building wipes my knee and stamina out).  I am 63 (almost 64 and no one still needs me, not now and not at 64, no one will love me once I turn 64) and if I continue to be so isolated, I will get needlessly more sick.

I feel much sadness and pain thinking about my, for me, painful isolation. And when I walk around, limping, wincing in pain most of the time and resting everywhere (I took a bus two blocks on Saturday because I just couldn't walk those two blocks!), I decided "fuck it, I'm going to blow my leftover May income and a chunk of June, eat frugally and buy me a cheapo mobility scooter.

I had hoped to discuss it one last time with my doc at today's appointment but she called in sick. I can't criticize her for that although the head nurse of her clinic chastised me for not phoning in prescription refills two weeks ago. PUHleaze. I have never had this clinic respond to me when I ask for refills. I only get refills when I see my doc and she sends them through on the computer in the exam room. I had been responsible, waited until my appointment to see my doc. The head nurse refused to give me anything, not even some insulin to float me so I am flying insulin-free for now.

I vacillate between a sense of despair and a muted excitement. The scooter won't change my isolation, my social isolation, but now I can get uphill to my pool! I can go to art museums which I usually do very often but have been unable to walk. And it's not just walking. I can't stand.

I have been using a cane. Canes are a bit like magic wands. Quite a lot of people spot them and let me go to the front of lines, offer me help, show me kindness. And I appreciate such kindness but I am still in a hella lot of pain.

Anyway. Scooter is coming.  I feel sad that I need one. Glad that I managed to buy the cheapo low end one that I ordered. And I am doing my best to fight back depression.

My depression is always about losing my daughter. A friend just went to a retreat that she had not realized was about grieving the death of a loved one, which did not apply to her. There were some folks at the retreat grieving the loss of their children through the child's choice to disown them. The retreat leader, a very well known Jungian, said losing one's child by the childs rejection is kinda worse than a child's death. Where are the support groups for my heartbreak?

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