A Single, Disabled Mother’s, Take on Healthcare (in VT and NH)

Okay, so I bring a lot of health issues to the table and I get that. I have sarcoidosis, ptsd, sad, night terrors, panic disorder, I am a hemochromatosis carrier, I have low blood pressure, asthma, arthritis, multiple site osteo-arthritis and I get migraines, I get cysts that do no absorb and melanoma’s (non cancerous, thankfully), and my inside lady bits NEVER cooperate, which is why I have lost half of them before I turned 37. I also have this condition that deals with Cytochrome P450 in the way my body metabolizes medication. It makes me need some meds at a higher dose than normal and makes me allergic to a whole plethora of others. I am allergic to Ativan (helps with panic), Buspar (does the same), anti depressants (plethora of reasons), Amitriptyline and NSaids (aspiring, Ibuprofen, Aleve, etc). So in the grand scheme of things, I am a hot mess of a patient and I have quite a few doctors. Some are right down the road, and some vary between a half hours drive and a 2 hour drive.

I used to teach for the Red Cross, so I am pretty knowledgeable when it comes to every day health care. I know my body very well and thankfully, most of my doctors understand this and listen to me. Except the occasional: “What do you mean you can feel your egg dropping?” I feel it dropping, end of, and in fact sir, that’s an actual condition called “mittelschmerz’ (and a few other things), no, I am not making this feeling up, in fact, it is actually listed in that puberty book I bought my 11 year old daughter 2 years ago “The Care and Keeping of You”, you should check it out….*rolls eyes”

There is a big drug epidemic here and well…everywhere. So I get that doctors are scared to prescribe pain meds. But lets take one of my migraine meds for example. I take immitrex in two forms (not on the same day). If it hits immediately I take it in a shot, if I feel it coming, I take a 50mg pill with Fioricet (with the Tylenol, not the aspirin). I filled the Fioricet (which is a form of a narcotic) in March, a prescription of 24 pills. I just asked for a refill on October 14. So when you look at the overall picture, abuse of meds just isn’t there for me. Other people, sure, there is always that possibility, but you aren’t treating them you are treating me.

My doc doesn’t like to prescribe my Klonopin. It’s what helps with the panic, it helps me to sleep so I don’t get the night terrors, get out of bed and fall down the stairs sleep walking and so on. I get that and am always willing to go to another doctor, even if I know the results are going to suck. I do it because my doctor tells me to, don’t we all? Anyhoo, said doctor sent me to a psych for the Klonopin. I like her, she understands my demons are old and that I don’t want to rehash them. We have good chats, I walk out with my prescription and leave. Then she retires! I met her replacement on the 2nd of this month. Now, I have been on Klonopin for 13 years minus my pregnancy. To be on 2 milligrams and have them still work, to me, is pretty damn good. (former doc agreed). New doc wants me to “think” about a medication whose main intention is to lower blood pressure but will help with the ptsd etc. (do you remember reading about the low blood pressure up top?). No, no I am not going to think about it. I already get dizzy spells and occasional fainting, why can’t we stick with what works?

Moving on, I met with my PCP after this appointment. He once again brought up the fact that there is this migraine med you can take FOUR times a day that will help prevent migraines. Because I really want to take something 4 times a day on a chance that it will maybe prevent something that happens roughly every 6ish weeks, no, no thank you. But I did take the opportunity to ask him to talk to said doctor we were just talking about and tell her how crazy it is to ask me to think about switching meds not just because I am a creature of habit, but because it works, and her med will make a situation worse. He agreed because he knows how low I run. ex: I don’t mind getting shots, I have had to get them all my life, iv’s….not so much. So before my surgery last year, right as they are about to stick in the iv, my blood pressure is 78 over 59, when in most people it would be spiking, so, yeah…low. I am glad he is going to tell her to shove it (my words, not his).

Another example, which I have mentioned in a previous post is the Sarcoidosis. I have it under control through an herbal supplement, so no, I don’t want to go through 5 more years of bone marrow biopsies, lung function tests, bronchioscopies, lung and lymphnode biopsies and the dreaded prednisone. Let’s just leave it be. I have my herbal supplements, accept it or drop me (thankfully they all accept that I take a few different ones).

The osteo-arthritis and the menstrual pain that came after surgery (sciatic is one of the big ones) is a problem that remains like that old tv show “Unsolved Mysteries”. As in, it’s a mystery why even though I am taking a different supplement for those, the doctors refuse to prescribe anything to take me out of my misery for those. They are scared of the addicts, of the repercussions.

So let me get this straight, you want to dump a whole lot of crap meds into me except one that might make my day to day life a little more bearable? The whole lot refer you to the “pain clinic”. There are two of them locally, and by local I mean each is an hour away in different directions. So after waiting 3-5 months to get in because EVERY doctor is sending their patients there, nothing good comes out of the pain clinic (except maybe some trigger point injections that are worse than the pain of childbirth, and that is saying something because I have had bone marrow biopsies). So the abusers get to abuse, and the ones that genuinely need the help get nothing.

I am a prepared patient. I save all my medical records, so for example, when I meet a specialist that is two hours away, I call 3 times to make sure they have received my records, even though on calls 1 and 2 they assure me they have. Having left at 5:30 in the morning (and forgetting my copies), I get there to find that no, they don’t have my records. But I went there because my doctor said so, and I did get a pnemonia shot out of that visit, so there is that…

I hear from other people that they too are frustrated with the whole health care system here. We aren’t talking about health insurance, we are talking about the quality of care. So my question is, does it suck as bad for you as it does for myself and the many others I have talked to from our area?

#health #life #writing

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