A Little Bit Of Luck And A Whole Lot Of Meds

Holy inconsistency on my part. Been a while since I posted an update. Lots to update on. Where to start, where to start…

Cellcept update. I’m feeling the effects on this one. Nausea has been my friend for the past week or so. I had to get a new Zofran script, so I can keep some on me in case I decide to throw up somewhere. Glamourous, isn’t it? Other than the nausea it’s kind of hard to tell which med is causing which side effect. Fingers crossed the nausea dies down.

I had to reschedule both my Pain Doctor and Neurologist appointments at Duke which sucks. It was hard enough to get those appointments, lord knows when I’ll get another one for each. I did get to see my Endocrinologist for my two-week follow up and surprise! all my tests came back normal. Still no closer to finding the source of my edema. *Facepalm* My doctors nurse (the woman I had the follow up with) told me that looking at my history, a few years will pass and then something will get revealed. No kidding!  That’s happened to me more than once, so I wouldn’t be surprised if it went in that direction.

The biggest annoyance the past week or so has been with my upcoming back surgery. It’s a long drawn out situation to bear with me. When I had the trial spinal cord stimulator, my insurance didn’t require a pre-authorization. I had to do all the prerequisites that my back doctor had me do before the trial, but for whatever reason my insurance didn’t bat an eye. My surgery date was set for the 22nd; was being the operative word. I was all ready to have surgery (yesterday); I contacted doctors to see which meds I needed to stay on/get off, moved some appointments around. Then, because, well fuckery, I get a call on Tuesday from the surgical center that I’ll be going to. The nurse tells me my arrival date, typical surgery instructions, yada yada. Well, smart me, I decided to google the surgical center and saw a ton of reviews stating that this place wanted payments upfront. Like, thousands of dollars, upfront. So, when the nurse was done with her schpeel, I asked to be transferred to billing. The woman in billing tells me that at arrival, I owe $1923.14. I laughed. I told her that there was zero chance of that happening, so she says “ok, we can do a payment plan where you put $600 something up front and make 6-month payments of $600 something”; I laughed again. I explained to her that I was waiting for my disability to be approved or denied, so there’s was no chance of that happening either. At this point, you can tell she’s getting annoyed with me [I didn’t really care to be honest], she asks me how much I can put up front and how much monthly. I told her $150 up front and $150 a month unless something comes up and I can pay more. She had to “talk to her supervisor” aka she needed to get off the phone and bitch about me. I won and got the payment plan I wanted. That was issue number one.

Issue number two came maybe a half an hour after that b.s. My surgeons nurse calls me and tells me that there’s an issue with the insurance. OF COURSE, there is. My insurance now decides that they need to do a medical review and predetermination before I can have surgery AND it can take up to 14 days to get this done. I was pissed. The nurse tells me that she sent everything in on the 15th and they should have all that completed by the 29th. I asked her if it was necessary to do it or if I could go ahead and have it as it was scheduled. Well, I could have had surgery yesterday, but, if I did, I ran the risk of having to pay for the $20,000+ surgical bill. Nope, nope, nope. Not taking that risk. I called my insurance to verify and they’re requiring it for this procedure. Good thing I didn’t act like a brat and insist on having it done the 22nd. As of now, I’m slotted to have my surgery on the 29th. Fingers crossed that this goes through review with no issues. That’s been a fun stressor on me.

Like I mentioned in my previous post, I was noticing that the Chlorothiazide hasn’t been working as well as it could so, I got to hang out with my favorite doctor today to do some med changes. There are always med changes, it is so freaking annoying. Anyway, I haven’t seen my PCP since I started the Cellcept, so we needed to catch up on some things, in addition to the med changes. The Chlorothiazide is now 2000mg a day instead of 1000mg. The last CMP labs I had done showed that my kidneys and liver were good so we’re going to see how a double dose is tolerated. I asked for my Amitriptyline to be increased from 75mg to 100mg since my headaches have gotten worse and so has my depression. Ever since I started the Cellcept, I’ve been in a funk that I can’t seem to shake. This progression has hit me harder than any of the previous ones. No problem, dosage upped. I needed my monthly script for my Ativan and we needed to discuss the next taper down. I’ve been steady at an allotted 5mg a day for the past two or three months [I honestly don’t remember] and I had intended on stopping the medication altogether during recovery. I don’t know what pain medication I’ll be given for recovery but it’s most likely a narco and there’s no way I was going to mix the two. Well, guess what, I can’t do that. *Facepalm* I thought, since my body would be focused on healing, my brain wouldn’t notice the absence of the Ativan. Yeah, that’s not how it works apparently. If I did that, I would go through withdrawal, despite anything I will be given. AWESOME. PCP said I cannot, reiterated, cannot, stop taking Amitriptyline, Lyrica, or Ativan. I can keep the same dosages of both the Amitriptyline and Lyrica, but I can cut my Ativan down to 1mg every 12 hours. Works for me.

After we went over the increases and what to take when, we got to talking about the Cellcept. I asked her which antibiotics don’t mix well with it in-case I have some dipshit nurse that doesn’t bother to look at my medication list. We figured that out. She did some reading up on the Cellcept since she doesn’t have any rainbow unicorns other than me [that take chemotherapy medication]. She gave the look. I hate that look. If you’re chronically or terminally ill, you recognized the “this is not looking good” face. Neither of us thought that once we ‘found’ the MCTD, that it would go downhill so quickly. I threw out a hypothetical and asked what the next step would be if this didn’t work. Mind you, I’m on a “baby” dosage of 1000mg a day and the highest is 3000mg a day. Hence why it was a hypothetical. Anyway, I asked her if the ‘higher up’ chemo was a stronger grade given through IV; she said yes. Then I said, “if this shit doesn’t give me cancer, that definitely will” and I laughed. She turned red, laughed, and wouldn’t give me an answer. So yes, the answer was yes. She told me she was sorry that it’s gotten this bad and I did my best (and succeeded) not to tear up. I tell her what I tell everybody, “It’s ok. I’ll be fine. Just have to keep fighting”. And that’s really all you can do. It’s hard and it sucks, but, what else is there? Just gotta keep on keeping on and take it one day, one spoon at a time.

I’ll do my best to post during recovery to at least say “hey, I didn’t die yet!” Wish me luck!

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