I have to admit, I have been pretty bitchy lately when it comes to our current healthcare system. A recent medical episode landed me in the back of an ambulance on my way to the local hospital. Naturally I didn't want to be here. It seems some adjustments needed to be made to my medication, and it took 4 days to figure it out. They dosed me up really good while I was there and I was GREAT within 24 hours. I don't know why I cannot have whatever that is outside of the hospital, but I have new meds and an appointment with a new doctor.
The new doctor was fine, but wouldn't explain why I can't have the meds I got at the hospital, for every day. I think it has to do with this. My current meds are $800 a month or more on the low end, and the hospital med is less than $50.00 a month. I have done a lot of research on these medications over the past two years. I just don't get it. So I started questioning, wanting answers. My goal here is not to be a difficult patient, it is to live a normal life without complications and certainly without medical episodes that land me in a 911 emergency situation.
I had to see someone else while I was there, Amanda, in the same doctors office. At first, I thought she was connected to financial services in regards to insurance and co-pays and such. It didn't take long for her to open me up about the problems I have been dealing with. Finally, someone interested in my rants. She was very interested. She asked a lot of questions, and we came to the subject of being tethered to medical equipment, and how that is not a life, as far as I was concerned. The new doctors want me on it 24 hours a day.
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Yes, I am at the moment tethered. My goal is to become untethered (and I am very strong willed), at the moment I am working on a way to financially able to be mobile with portable equipment. Just not there yet. It is a matter of money.
Amanda asked if I was suicidal. I, still in rant mode, said without thinking, "if I don't find a solution, who in the hell would want to live like this." It was still ranting. She began writing very fast, and looked very concerned. "No, wait. "
I then wondered just who was this Amanda and what have I said. I needed to explain, but first, I wanted to know who she was. Yes, Amanda monitors patients with disabilities to make sure they are coping, and with that I changed the conversation. "No, I am not coping, I am angry that the doctors want me to be tethered 24 hours a day, it is unacceptable to me. Suicidal, not today. (why did I say not today, I could have said no). Today, I still have an opportunity to find a solution." A pause, she kept writing, ... "and I am confident I am going to find it, or improve ."
I seriously don't have a lot of confidence in these doctors, but I am not going to say that. I understand that they diagnose per written guidelines provided by the administrators of the health care system and not from their skill as medical doctors. I take this time to think what is the worst case scenario if she thinks I am suicidal, lock me up for 72 hours? I am rather locked up at the moment anyway waiting for these new meds to regulate me. Hopefully, that brings the improvement I seek. So I let go of my fear. If she wants a candid conversation about quality of life, so be it, from someone caught there.
When she looks up, she asks, "What are your thoughts about suicide?" I think this person has some issues herself. I respond, "I happen to know a lot about it. My youngest brother started attempting suicide at age twelve and continued throughout his entire life until his planned death about 5 years ago," and I told her the whole story right up to my conversation with him the afternoon before his death. He had HIV and years of overdosing had taken its toll on his organs which were beginning to fail. He probably had a month perhaps if hospitalized, but nothing was going to change the fact he was dying and he was going on his terms. That night he would go to sleep for the last time. I was not only OK with it, but was there to help him be OK with it.
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Dread just came over me again, what have I done. Why did I tell her about Ernie. I had never told anyone about that last conversation, not even my siblings.
I was done. I didn't want to talk anymore.
Shit. Sounds like Amanda is one of those evil-doers posing as "someone who cares." Can't believe your nearly boundless cynicism missed that one.