Medication day today! Always a good feeling. Knowing that I will be in less pain for the next several days takes a lot off my mind. But I’m stressed as hell about what to do if I run out early. There’s no money for more Kratom or anything like that. I’ve got to be really good about making it last. Which should be way easier than it has been because things are still pretty good! I can’t completely relax; my health can turn on a dime. And it can get way out of control in a matter of hours. But for now, I am pretty content! For the past week, the headaches have completely backed off. I think the newest dose of my Acetazolamide that Dr. C gave me is finally doing the trick. I still need to find a new neurologist but thank God I have Dr. C in the meantime. Otherwise I would have bashed my head into a wall a long time ago. So that is on the list of things to do: get new neurologist. I am not sure why, but the wait list for neurologists is very long. It is hard to find one that is accepting new patients and even harder to get in in a reasonable amount of time. I should handle that tomorrow.
I’m anxiously waiting for my next pain doctor appointment with Dr. S, which is on the 15th. I called to see if it would be possible for them to give me a call if someone cancelled their appointment, so that I could get in earlier. Apparently, they do not do that. Giant bummer, I feel like everything is hinging on this appointment. I desperately need a job but I can’t have one until I get on a medication regimen that makes me stable. Or as stable as I get, anyway. This Oxy is good for pain relief but I can’t depend on it. How much I take is directly connected to how I’m feeling and things are so up and down with me that my dosage is all over the place. I think I need an extended release medication for the pain that is always there and then a medication for breakthrough pain. For when things happen and the pain spikes. Migraines. Ruptured cysts. Back pain. Random bullshit like staph infections showing up in my face. It seems like there is almost always something or another going on. So those are my ideas but Dr. S might have an entirely different approach. When we have a plan, then I can start living my life… hopefully. And I can stop being such a financial drain on everybody. Not to mention being bored out of my mind, sitting around the house all day. I truly cannot wait. I will be so much happier.
The insurance company and the health coverage marketplace totally screwed me over. They are charging me $575 for my health insurance for October. When it is usually $375. The marketplace needed some verification regarding how much money Jon makes, which is our only income since I lost my job. I put off dealing with it while I was so sick but then called them a few weeks ago, and last week, to try to get it sorted out. The guy I talked to said that I was technically past the deadline but that he would make notes that I had been in touch and would be able to submit Jons check stub on Tuesday. He said that it would be fine. Then I tried to pay my premium yesterday and found out that they want an extra $200 now. After many many hours on the phone, I finally found out what was happening. The guy I talked to last time didn’t make any notes at all…or even mentioned that I had called. So they took away my tax credits because I missed the deadline which was on September 9th to verify my income. Bam, almost $600 without the credits. A month. It just doesn’t make sense to me… “Oh, you lost your job and don’t have any money? Okay, we’ll charge you $200 more dollars a month. That’ll help, right?”. Morons. After a giant fight with mom about it last night, I got things more or less straightened out today. I resubmitted my application over the phone and updated my income. Now I have a new deadline to meet where I send in the check stub. My tax credits have been reinstated and my premium even lowered a little bit. But it doesn’t take effect until November 1st, which means I’m still on the hook for $575 for October. I have to sell my wedding dress to pay for it. I’m pretty sad about that but there is no way I can lose my insurance. It can’t be helped.
I’m surprised but grateful that the stress from all of that hasn’t made me sick yet. Usually that is the first thing that happens when I get stressed out. Perhaps my body is taking pity on me…or it’s just trying to drive me crazy with inconsistency. Whatever, I’ll take it. I am still dealing with medium to severe global body pain- pain in my joints, muscles, skin, nerves. That never really goes away. My back is hurting quite a bit so I’m hoping that Dr. S can finally get me scheduled to do some injections. I haven’t had any in at least a year and they really help. Something to look forward to. Ha, a needle in my spine! I can’t wait! Aside from the body/back pain there are really only 2 things that are driving me crazy. Constant weight loss no matter how much I eat. And my hair is falling out still. Really badly. I have to wash my hair tonight and I’m just dreading it. I don’t wanna be bald!! But there is nothing I can do about it so I guess I’ll just keep rolling with it. My eye infection is down to just a tiny bump that doesn’t bother me. I don’t know how to get rid of it completely….
As for the allergies, I am not really seeing a difference in how I feel regardless of the three new medications I’m on. I gave up on all of them for about a week while I was healing up from the thrush. But today I did the whole thing- the steroid inhaler with the spacer, the Allegra, the nasal spray, and my regular rescue inhaler. My breathing is easier but aside from that, I can tell no difference. I have had drainage all day and need to spit like every 10 minutes but the medicine hasn’t helped that at all. I’ll stick with it for a while and see if it is some kind of a cumulative treatment. But if I don’t see any improvement then I’m ditching all of this stuff. I’m already on like 13 different medications, I don’t need 3 more that are for nothing.
Dr. C asked me if I wanted to go back down to 10mg oxy or stay on the 20mg. I am of two minds about it. On one hand, I know that my tolerance is getting really high and that is a bad thing. It causes all sorts of problems. On the other hand, if things get bad again then I will not be able to change the dosage back to where it is now. You can’t change strength of pain medication too frequently. And I would much rather be in a position of having too much medication than not enough. When the pain is really bad then I go through the meds twice as fast and then I’m out for days. That’s kind of what I meant by saying this current medication is just too unstable. So I asked him to keep me where I was… I plan to stay put at that dosage until my appointment with Dr. S. He and I can decide where to go from there. If I need to be on nothing for a week or so and let my tolerance drop so that something else will be effective, then I will. It won’t be pleasant but I need for something to work.
I can’t wait to stop waiting.