Life was going well. I felt better than I had in ages, ages, ages. A spring in the step, an I-Can-Do-Anything Reading Rainbow feeling. Chin up. Chin up. Thoroughly thoroughly. Perfectly charmed by the upward progress in my life. And then?
Bam. And again BAM. And it just keeps on BAMMING.
In February we found out that James was in severe heart failure. LIFE CHANGE. LOW-SODIUM diet for AUTISTC ADULT CHILD. WORRY. WORRY. WILL HE JUST DROP DEAD??
Doctor’s appointments. My rage at the inefficient medical machine.
In April James had a stress test. Then he had an Angiogram. Then on July 14th he had a routine generator replacement for his deliberator and a much-more-serious revision of one of the wires going from the device to the heart. In Nashville.
3 days after that we were in the ER for 7 hrs. He could not breathe. He was in hospital, septic–10 days. He was released on July 27th. Since then we have had home health–PT, Occupational Therapy, and a Nurse coming to the house every week. We did breathing treatments. Things were going well. The revision to his lead went well. His ejection fraction went from 20% to 45%.
Then he had a setback with a UTI, which was scary for ME. More doctor’s appointments and blood draws. But he’s okay now. He went back to the Aim Center Thursday. Better. Better. We will start cardiac rehab on Monday and by “we” I really am including myself because since I will be there anyway and this is the nicest gym I’ve EVER seen I am going to work out when he does.
During all of this, other things happened. My husband continued to have to deal with his aging and sick father who, as it turns out, just died 2 weeks ago. Then my father’s girlfriend died, I think, 1 day later. And there is another stressful medical situation with another relative that must be dealt with soon.
But okay. It’s fine. Except, my migraines are BACK. And my body is wracked with pain so I had to go back up on the worst ever drug–Gabapentin. Joints are hurting. Is it really bursitits?
My Complex Regional Pain Syndrome that started after knee replacement in 2019 seems to be coming back. My upper neck, C4-C5 is literally on fire. I am surrounded by heating pads and frozen water bottles. I have kinked up my neck and it won’t let go. It just will not. Sometimes, like today, I wonder just how much I can bear. And somehow….do I actually feel better because I mired up in the goo today and am writing about my angst my almost-despair?
We have started smoking again.
I have begun the intuitive eating program.
My counselor has to leave the practice where I see her and go do another thing to get her certification, so I will have to get used to a new therapist. I may just pretend, make things up, see where it gets me. I am so very, very TIRED of telling the story of my dark childhood, which I’m not even sure was dark. I just don’t know how to take it, esp. after writing and writing and talking and talking and dreaming and writing and talking and writing and writing and writing about it most of my life. I mean, did I really see black smoke coming out of the chimney two days before the house burned? Did my uncle and grandfather really encourage me to climb a tree because they knew there was a snake in it, a snake I came nose to nose with? Oh who knows? And who cares? One can only muster up so much interest in the drama of one’s life.
I thought I had thrush but it turns out, according to my dentist, that it is just dry mouth. My tongue is literally inflamed. Very red. And it seems to be swollen? The Biotene mouthwash for dry mouth hurts my tongue. I suck on these blue lozenges. My dentist said “water is no substitute for salvia.” No one has said that to me before. I feel foolish. I did not understand that the dry mouth, like the dry eyes and the dry nether region, must be treated.
I joined a gallery that I’ve not managed to even go to yet.
We joined a gym that we haven’t made it over to.
I bought a wall mop and a Dirt Devil with extendable wand (the bomb).
I bought a Vitamix (not sure yet does not appear to be the bomb)
I ordered a pair of those “Migraine Glasses” today, which is funny and also tragic funny because I am getting the wear-over pair first to see if they work, this after the woman at the hospital (where we have CONSTANT appointments) said, “Of course if you have the Silver Sneakers program,” and I didn’t just ignore it but quickly said “I am not that old yet,” as if it gives a good damn at all about anything, it, this little hiccup of life twisting in on itself, peering awkwardly over the neck that can still twist to see the woman sitting in the chair in a big black hat, hair so short you can’t see it at all, looking at least 65 god bless her Silver Sneakery senior citizenish age spotted and blotched face she must seem ancient.
The hats are for Migraine. The sunglasses I often wear inside are for migraine. I ordered menthol nose plugs for migraine (good, I think). When I had my colonoscopy last week (no, I’m not kidding for my healthcare must go on no matter what–I’m still getting shots in my face and taking gobs of pills and rubbing lidocaine on various muscles and joints), I kept on my thick black sleeping mask the whole time and even with that, and a towel on top of that, the lights in the operating room were so blinding and excruciating that I was writhing in pain before they put me under.
And all of this is related with that tinge of Shame, because chronic pain must be in some part the fault of the patient, especially if that patient is morbid and by morbid I mean, of course, morbidly obese.
So yeah, this is dum-dum day, a god-must-have-died-for-good day, a wherefore art day. This is the time that tries the soul of the woman.
But this is good–I have beat my mom. She was dead at this point, at 58. She didn’t reach 59. I will be 59 Nov. 15th.
Perhaps I shall throw an enormous party for myself and fill this house with every sort of dessert I love even a little. And maybe some chicken.
I would be angry if the coyote’s anvil fell on my head while I’m sleeping.
Except of course I wouldn’t know it.
And the weather has TURNED.
~r.
