On my way home tonight was the usual talk on the radio about the new president and all the issues that have come along with his administration. Today’s big news is the repealing of the Affordable Care Act and replacing it with something that seems far from feasible to me, and seemingly everyone else who was being interviewed.
I have been trying not to panic about what they are going to do since there is no point worrying before something actually happens. Yes, the ACA has been somewhat of a mess for me, but at least I can accept that it was enacted with good intentions rather than out of spite and stupidity.
Health insurance, being around good emergency rooms, hospitals and doctors has pretty much ruled my life since I was in college. Even having good access to pharmacies and laboratories has had to be a consideration. And I have had times where I have had to pay over $500 out of pocket just for insurance monthly, never mind the rest of all my health needs. I have given up on some dreams and goals, declined job offers and more because of these necessities. But, until now I have never felt like I have had absolutely no say in what happens to me. To have my literal life in the hands of a group of people with no interest in the welfare of millions is pretty much terrifying and really disgusting. I can only hope that by the time I make this blog live there will be some positive news to write.
Mundane thing such as looking for a job, offering to volunteer, going out with friends and anything else which involves making plans and commitments has become a source of stress. As with other aspects of my life, it was not always like this. As my body has gotten worse over the last few years so has the reality that I may not be able to be all that I used to be. Even at my worst before, nothing really stopped me. Now, about 8pm stops me, ha. The real worry is that I will not be able to follow through on my commitments, no matter what they are, because something will happen. And the shame is that I really love to go out and experience the world!
Then there is the anything but mundane issue of now being resistant or allergic to most every antibiotic thanks to having them thrown at me every time there was an issue for many years. It began when I was living in Colorado years ago and had yet another doctor who did not think of the whole picture. I ended up having the horrible experience of having a picc line put in, unfortunately by someone who had no idea what she was doing, but that’s another story. I had the line in for three weeks while I went to work and did my usual things in between having a visiting nurse come in and administer the medicine. But at the end of the time it turned out that the extremely strong doses did not help and it was all for nothing. At that time I also went to more specialists trying to get help, something I have done over and over again, and found one doctor who was actually visiting a hospital from out of town and had a new idea of flushing bladders with Neosporin to try to get rid of infections. I was willing to try anything, and it worked for a while…
Since that time my issues have expanded from just urinary tract infections to other serious ailments that, of course, need antibiotics to be treated. Cipro and Levaquin were the first to be taken off my list thanks to having every doctor use them to treat everything. At first they were fine, then came the incredibly intense muscle pains that left me barely able to stand up straight, never mind walk. Then came Macrodantin with its lovely neurological side effects. Most recently I have had to add Bactrim to the list because I have begun to develop painful hives on my face and one part of my foot when I take it. Hives are not pleasant and the worry is that it can lead to worse symptoms. There is also a list of many other medicines I am unable to take safely due to the transplant, so the list is fairly long.
Right now I have one medicine left which I am currently taking way too much thanks to my chronic sinusitis and have no doubt that this medicine too will be added to my list soon. This terrifying possibility really hit home this past week when I was forced to go to a local Urgent Care. It’s not a place I would normally choose because most are not equipped to handle things, but their website stated they were an extension of the local hospital and had the ability to do lab work and administer IV meds. So, after days of feeling absolutely miserable, and a very long day at work, I went. After paying and being led to a room in the quiet building the doctor came in, and five minutes later I was sent away. Only after watching the doctor become visibly upset, almost angry, that I was there because I was too “complicated.” Yep, there’s that word again. Anyone care to decipher what he really meant? He listed all the meds I am resistant to and reminded me that IV meds are all in the same class as the oral meds and there is not much left for me.
Somehow I have had the luxury of allowing myself to believe, hope, that IV meds are special and will be able to treat me once the orals lose all ability.