CHRONIC TONIC posts on Thursdays at 9 EST, it is a place to share stories, advice, and information and to connect with others with chronic health conditions and those who care for them. Our diarists will report on research, alternative treatments, clinical trials, and health insurance issues through personal stories. You are invited to share in comments (and note if you'd like to be a future diarist).
Tonight's diarist is MsGrin.
I keep forgetting that I need to write this tonight. I was playing with the baby chickens on the back porch so that I could tend to filling up the water trough for the larger chickens. Got done playing with them, started to go in... did realize that I needed to turn the water off before it overflowed. It's hit or miss whether I'll remember things. Even when I'm trying my hardest to remember while it needs to be remembered.
Driving is worse. If it can't be found on 6 year old GPS, it's possible I won't find it, it's just that simple. I realize that right and left are supposed to mean something consistent, and of course I think I remember which is which when I use them. I'm wrong nearly as often as I am right, but not in a predictable enough pattern to dedcuce when I've selected incorrectly. Used to be I could always navigate by which side my heart is one, but very often I wonder these days when I attempt to conjure up my internal resources. Yesterday, I got lost both going and coming to the new farm where I'll be living for a bit. Made a right instead of a left early in my set of directions and then kept driving for a half hour... it looked familiar, but I couldn't discern whether it looked familiar because it was on the way to the place I was going - it wasn't. Got lost coming home, too, but much later in the game when it was easier to figure out where I was and how to return to the metropolis.
My attorney spoke with my neurologist this afternoon, the one who first said I was crazy and then who acknoweldged that the disease I have can cause the neurological issues I've got. It's difficult to have hope that someone who told me to see a psychiatrist because I was complaining of seizures and the consequences of inflammation in my central nervous system can be helpful to my case, but he was an awful good sport last year in recanting the need for psychiatry.
I don't mean to knock psychiatry, of course. I just don't think it should be used to address seizures and dizziness.
It's always interesting to read what's been said about me in my medical files. Five years ago, a contract doctor working for a public agency wrote in her notes that I had attempted suicide. I hadn't. This is a doctor who is (mis)quoting what I had said, but now a doctor has said it and it appears to be true. I did go to the hospital at the time she referenced, and I was extremely depressed, but it didn't go down like that and it did have a moderately happy ending. I was seriously depressed. This was something like a year after my first heart surgery, so I was in my late 20s. Heart surgery can cause depression for some - I don't think they really know why, but no one told me that could be the case. And then a prescription got misfilled when I left the hospital and it screwed things up for me for months... I was supposed to take one of the West's very oldest medications, digoxin, a cardiac regulator made from foxglove, I think. I was supposed to take it once a day, but the bottle said to take it 4x per day, which I did after checking with my physician uncle saying that I remembered the prescription differently than it got filled. For that week as I was taking a month's worth of medicine, everything I ate or drank shot back out orifices on head or tail. And I began hallucinating - that lasted the better part of the year.
So I was out of energy and seeing these ghost like shaddows, oh, and I had lost memory of major portions of my childhood, and my family was 3,000 miles away (that can be a benefit as much as a hindrance, of course), and my exhaustion wasn't clearing...and. and. and. And the depression finally hit and hit hard.
My health insurance covered inpatient treatment but no outpatient counseling of any kind. So I did the only thing I could figure out to do: I went to the emergency room and asked for help. The version of help in my head was that I'd go someplace where they cooked my meals, and I'd be able to take a long, hot bath and shave my legs, and there would be someone extremely understanding who would let me cry for a bit and tell me that I was being brave and that my life would be my own again. I went on a Friday night and figured that by Monday I'd have cried my eyes out and slept hard and would be ready for a new work week.
You see where this is going... There's no hot water, of course, and the bathtubs are the size of buckets and if I thought I got to keep a razor, well I was crazy enough to be checked in there for sure. But there would be no doctor on the floor evaluating me over the weekend, no counselor to speak with. I could go on nature walks with the other people on the floor and color, as I recall. I learned the morning after I was admitted that the plan was that they'd stick me on meds and keep me for a week like a science experiment and see what happened when the chemistry changed. I just really, really, really needed someone to talk to... someone to validate my experience as a twenty-something whose body kinda konked out on her a bit and now she was better and it was slow recovering but atta-girl and all that.
No. They don't do it that way. Drugs. A week. That's that. But I'll get behind at work, I told them, and THAT isn't going to help ANYTHING.
The nature walks weren't doing anything for me. I had a bathtub at home. I'd checked myself in and I asked to check myself out.
Here's the kicker - I'd phoned this hospital several times before being admitted. Each time I called, I asked if there were any resources for cardiac patients and I described the issues I was having. Nada.
Now that I'm about to be released on my own recognizance, I get checked out by a social worker, and I learn there's another answer to my question about resources for heart patients: There's a cardiac rehabilitation program in the hospital. It only took being admitted to the psych ward to learn about it.
In fairness to the staff, most patients learn about these resources when they are being released after cardiac surgery. Only my surgery was done in another state where a family member was chief of staff and the surgeon had married into our extended family. No one told me about these resources there because I wasn't going to receive my follow-up treatment there. And then no one mentioned it when I got 'home,' presumably, they figured I already knew about it.
The rehab did its job. My fear of pushing my body too hard was eased by being monitored by nurses. I got some strength back. Lost some weight. Began to feel more normal.
And yet that story follows me and my insurance company glommed onto it as if it proves that everything neurologically wrong with me was either imaginary or secondary to depression.
I sent for the hospital records of this admission. They are as I expected - I was upset when I arrived but no confusion on their end about my having attempted anything life-threatening since I had not.
I'm frustrated and I feel powerless. In 35 days, the negotiations with the deniers should be complete. My reset button will then be push-able as I may actually (trying not to expect too much, remembering how much debt there is to clear out first) have resources to finish making myself better or at least better enough.
I have some brain games I'm going to get started on. I hope they perform as advertised and help my brain come back. I'm tired of getting lost and confused and disoriented.
I didn't know what was going to come out when I sat down to write. So, there it is.
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