And so the journey continues…it’s been a couple days since I stopped those two meds Mike was taking. It’s a daily vigil now…will there be a serious cardiac reaction or won’t there? My sister-in-law thinks Mike got a do-over on the heart and now we simply need to work with the neuro complications. I dunno. I do know that so far, so good. His blood pressure is still on the low side, but he has always had a low blood pressure. He used to crow about it when he’d come home from the doc because I do not have a swell blood pressure. His heart rate seems steady and even, his pulse low, though realistically, I am not sure I’d recognize A-fib if I heard it or felt it. Since I don’t listen to his chest it’s highly unlikely I’d recognize it from his pulse in any case. But he has no shortness of breath and doesn’t complain of racing heart episodes so I’m going with the no issue premise.
I will say, however, that the pills seem to have had a sedative kind of effect on him. Much more of his personality is coming back out since he is off them. He is more awake. More alert. Shows more initiative. All this is good. However, the feisty side of him has also come out again and he is far less malleable. Hmmm. The coming days could get interesting! He seems more capable of higher order thinking yet again. This morning when I said I love you he seemed sad. I inquired and he told me yes, it made him sad. When I asked why, he told me “because I don’t know where we go from there.” That was a little perplexing. I tried to clarify. It seems he equates me loving him, him loving me, with going and doing good things together…like dinner, movies, trips etc. In truth, we’ve been way too focused on therapies and the like so we have not done much as a couple. Guess with the holidays and thereafter we need to remedy that!
Highmark has denied further speech therapy…seems they think that there is no evidence that continued formal therapy will achieve additional benefit. There’s no evidence it won’t…but they err in favor of their bottom line. It’s frankly too much to argue at this point so I’ve chosen not to appeal. We went to Wilkes Barre for some speech therapy with the VA, and I saw promising changes after those sessions, however further sessions are on hold…I don’t want to be 2 hours away if a serious cardiac problem rears its ugly head. Better we should be close to home and our regular docs if something goes wrong. Then, next year, we won’t qualify for VA health care at all from an income perspective. The SSDI income will push us just above the income requirements. I’ve been trying to get him evaluated for catastrophic disability but though I have tried no less than 10 people in the VA health care system nobody has been able to tell me how to get this eval initiated. Catastrophic status would give him access to health care…which would give us access to cognitive and speech therapy. I don’t need the rest of the health care. Just the therapy. I am pretty sure he qualify for catastrophic status. I guess now the Monday call is going to need to be to the Medical Director and Wilkes Barre. The Federal rules say he/she is the person responsible for the process. Maybe they can ferret out who in their organization is responsible to help me initiate the paperwork since none of their organization seems to know they are responsible. If that doesn’t work I don’t know what the heck will. Will it take a call to my Congressman’s office? Surely that shouldn’t be what it takes…!
Meanwhile, Mike’s sister Mel has her own versions of therapy in place for Mike. She is a Godsend and totally dedicated to getting him through this. Mel taught elementary school…and well…and Mike gets pencil and paper work. Math, spelling, reading comprehension etc. She takes him to the church with her to do her reports to give him routine things to help with…clean up the pews, collate and staple her reports, simple, repetitive things. She also takes him walking several times a week. They do 2 or slightly more miles. Today she had me bundle him up like a tick ready to pop. Mr. Feisty was resistant…and I informed him “Mel said so”. He informed me he didn’t care what Mel said. Yeah? Well YOU tell her that buster…I am not about too. When she gets here he is eating out of her hand. You go Mel! She has much to do with his progress and I am very grateful for her efforts.
They’re out walking now…and the vacuum cleaner awaits. The mountain of dust and dog hair beckoning to me. Till next time…take care of yourselves!