Yesterday something I've known was coming but was no less horrifying came: my cousin's husband died from a 7 year cancer battle. He was only 50 or so. They have a 12 year old and an 8 year old and also his mother lived (lives) with them and is apparently somewhat confused. My cousin has a lot on her plate. I didn't know him extremely well but I do know that I respected him and found him extremely kind. I remember when my grandma was dying, 19 years ago, and they came to visit. We bred golden retrievers and they fell in love with one. I can't remember if they took her home then or after my grandma's funeral or if we kept her for a few months until they moved out of NYC but regardless they took her and loved her greatly. In fact one of the pictures a family member who is a photographer put up of him before his illness devastated his body showed his daughter and him walking that dog along with the dog who had been our male when my family fell apart and my uncles saved the dogs from my father killing them. One of the many surgeries he went through in the last months of his life (MANY) was just a few days before my hysterectomy. A day or two before my surgery I badly burned my arm on an iron. It was this nasty oozy wound and the hysterectomy booklet made it pretty clear that they wanted all your skin intact. I knew I'd have to go in with a bandage on it but I posted on facebook to see if any of my nurse friends had rapid healing tips. Instead I got word from him via my cousin on a treatment that made it heal significantly and which combined with the burn dressing I had in the hospital helped it heal so well that I am barely going to have a scar. He liked to help people. He was a psychiatrist and fought really hard to work these last months. I think he did off and on clear up until just before Christmas which is when things really got worse fast (I think the surgeries they'd been doing were no longer controlling the cancer). Anyway, I am so very sad for them and wish I had something to say or do that would help. But of course there is nothing. It does put things in a different perspective.
Today I drug myself up to see Dr. Brain. Actually I got my car jump-started because a few days I didn't slam the rear of my car hard enough (I was afraid of sliding on my icy driveway) and the battery died, and THEN I went to see Dr. Brain. I have a little longer before anything horrible happens. She's been trying to get hold of the Emsam person specifically for this area and then discovered that there isn't one anymore. Nobody seems to know what is going on. So she's going to try to directly contact the company and tell them exactly what I did, that this is the only med that ever fully worked for me, that changing is quite risky and would involve possibly extensive hospitalization and suicidal ideation, that I'd more than likely be changed back in a year requiring my body and mind to suffer significantly twice in that time period, and that there is also a chance that if I come off Emsam and nothing else works that doesn't cost $625/month I could have a terribly hard, dangerous time that could be avoided by simply waiving the small difference between what they consider able to afford $7500 per year (I wish I could tell you what percentage of my income this is; it's actually kind of funny) and not able to afford that. They already told me absolutely no exceptions which is apparently unusual so she's going to try even though it may make no difference. If anyone can convince them it is her; I've seen her fight insurance a couple times and she is a gifted fighter who often wins. And trying that last measure is important.
She didn't give me a ton of information about changing. I asked her how bad it would be. For the 2nd time in 10 years she took a long time to think how to word her answer. Basically it's going to be very hard but could be worse. She'll calculate exactly when my body no longer will have a specific amount of Emsam and work with the hospital dr. and when I get to that point they'll be able to start miniscule doses of the new med while monitoring carefully and easing the last of the Emsam out. So I don't have to wait 2 weeks between. She didn't say how long I could be hospitalized but she did specifically say that I'll have to be patient with getting results from the new med because I will start at such a low dose. So I may still spend a good chunk of March in the hospital but I won't go through the horrible nothing period which was what I most feared.
I have, to my knowledge, a month's reprieve and then after my February appointment I think we'll start weaning if we have to do this. I could be wrong; I could get a surprise call to tell me to start sooner. I think that depends on how long they decide the wean will go and of course if she's able to convince these people that they are putting my life at risk and really should help me for a year until I have insurance.
I got a script for a mood stabilizer that we know knocks me out to try to use to sleep. I'm going to try that out pretty soon. I fell asleep sometime after I got home so I'm putting off bedtime routine to make sure I'm not having trouble falling asleep because of my nap. I really pray that this works. The higher dose is more than I can handle but hopefully this low dose is perfect. We'll see.
So there's a lot of information for one day. I have no idea what is happening in so many ways and my mood isn't great right now so if I don't write much it's just the overwhelmed thing and I'll be back.
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