Nothing wanted to go right today. Chris and I had a ton to get done today. We started off going to see our accountant and sign everything to file our taxes. The e-system went down so she's not sure when exactly she can get them filed or when we'll get our refund. Next we went over to Wyomissing. I needed to pick up my oxy script and get some Rasuvo samples. I haven't re-met my out-of-pocket max yet on my health insurance policy, and a number of my meds are really expensive. Rasuvo's one of the most effective meds I take, but it's also not cheap. A month's supply clocks in at $200 despite insurance.
When I realized how pricey it was going to be to refill I contacted my rheumie to see if he had any sample pens left. He did, and put a months supply aside for me to pickup. Last week when I went to get my labwork done, the labs from my rheumatologist were still in my maiden name so the lab wouldn't run them. They had to call and get a new lab order, and I followed up when I got home. I had to request medical records for Jefferson and asked them to make sure my name was switched properly in their system. She got my oxy script for me, and it was in my maiden name. There's no way the pharmacy would fill it, especially considering my insurance is in my married name and the laws on narcotics are super strict. I was annoyed, because I took care of this, and here it was still screwed up, but at least we hadn't left before I noticed it. I asked them to fix the script, but it turns out my doctor was out on vacation for the next two weeks. He goes on vacation a lot. There's so many rules for narcotic prescriptions now to discourage abuse and drug-seekers. But it really hurts real patients that have a legit need. You're only really supposed to get narcotics from one doctor. The pharmacy's weird about filling narcotics from more than one doctor, other doctors are weird about writing them. It's a pretty big deal. A pretty big deal that was about to become a pretty big problem for me. While I did nothing wrong, crossed all my t's and dotted all my i's, the doctors office dropped the ball. While I'm not addicted to oxy, I am physically dependent on it by this point (Yes, there is a huge difference. I am physically dependent on my depression medicine as well for example). If I suddenly stop taking it I will get really sick. I'm sick and in pain enough right now from my steroid taper. I started to panic, and get really pissed. After the situation was explained to the on-call they agreed to rewrite the script in my married name, but I'd have to come back Friday for it. Annoying, but it could have been much worse.
While sitting there waiting for the whole mess to get sorted out the writing on the boxes for my samples caught my eye. 'Exp: 11/2015' Fuck. So, while beggars can't be choosers, I asked the MA about it. I wanted to make sure that the expiration would just make it less potent, and not chemically volatile. And if maybe I would need a higher dose to make up for the potency difference. She went to ask the nurse, and then confiscated my samples. Volatile they were, and expired were all the ones they had. Fuck. So not only was I annoyed that someone didn't even bother to check that shit in the first place, but it was about a week wasted that I could have been looking for financial assistance from a drug company rather than being comfortable in the fact that I had samples awaiting me. I have less than a week until my next dose, there's no time for begging the man. I need to find $200. Fuuuuck.
We stopped in at VisionWorks so I could get my glasses readjusted. With the steroid taper I've been gradually losing my symptoms of Cushing's syndrome. Losing a great deal of weight in my face as result. My glasses became ridiculously loose and were falling off all the time. It was becoming incredibly annoying. I was so glad to finally be out in the area so I could get them adjusted without the guilt of wasting gas. I can now bend over without playing a frantic game of blind catch and various swear words.
I've had ten bucks ferreted away for quite some time along with a kid's meal coupon for McD's because I knew we'd be out awhile doing errands today and wanted to grab food on the go. So we stopped there after my rheumie's. Chris got two sausage muffins; I got a kid's meal. I got a cheeseburger and apple slices. I'm sitting there nomming on my apples and tell Chris that they seemed a bit sour. He asked if I checked the date, I had not. I fumble around with the package and see that they're three days expired. What is this? National try to kill Trisha day?
On the upside, my kid's meal did come with a cute book and some stickers.
Our next stop was the Berkshire Mall. I needed to go to Belden Jewelers to get my jewelry inspected. I noticed the other day at my Pop Pop's birthday party that the one amethyst stone in my bracelet looked flawed so I asked them about it. After inspected it they said that whoever set the stone cracked the tip with the setting. My warranty only covers diamonds and precious stones though, and apparently amethyst is considered semi-precious. Which of course they did not tell me when I bought the warranty. Assholes. Not everyone's a geologist. It was their fault in the first place. It's not really noticeable unless you're looking at it really closely, but eventually the stone will probably crack through and fall out of the setting. So, I'm eventually going to wind up having to pay to get it replaced. I really like the bracelet, but how annoying.
We did have plans to go to the Reading Hospital yet to get discs and what not from their records department, but by that point I had it with everyone. We went home instead. We'll go to the hospital tomorrow when we have to go back to my rheumatologist.
You would have thought my day would get better when I went home, but it didn't. I used to order my Rasuvo script from CVS Caremark, but with my new insurance I have to order it through Acreedo this year. The infusion nurse also gets my Tysabri through Acreedo. My Xeljanz script got sent there as well. Well, all of these drugs come with a handful of risks including death. Mixing them together isn't suggested, and increases risk of death. It's a risk I'm well aware of. While I'm working with Jefferson to come up with better treatment options, it is what it is for right now. Well, somehow this caught the FDA's attention now, and they have their panties in a bunch and won't let me fill my scripts. They want to talk to my doctor. Who's on vacation for the next two weeks. Son of a bitch. So I'm trying to see if this is something the on-call can put to bed so I can get my meds, but it's not looking promising, and I need my meds.
Now is not the time to be off my disease modifying drugs. At all.
So then, because I'm a glutton for punishment apparently, I call my disability lawyer to check up on things. I deal with some type of paralegal or something that preps my case until it's time for the lawyer to present it. I had called her a few weeks ago to update on things, and hadn't heard anything back yet. It was time to re-check in. The receptionist answers the phone and I explain that I had called and left a message a few weeks ago and hadn't heard anything back. She informs me that this person was terminated. Well, that explains why she never called me back. You'd think they would have reassigned me to someone else that would have touched base and taken over my case. You'd think. So they assign me to someone new who takes over my case and goes through my file to see where things are at and what needs to be done. All that was in my file was everything I provided. No work was done on my case. None. No wonder she got fired. At one point while she was looking through my record she thought I was on hold and there was talk about punching the person whom was fired in the face, and lots of 'fucks'. I'm pretty sure I was assigned someone awesome and after my own heart.
She faxed me a bunch of crap to fill out which I worked on tonight, and faxed it back along with a bunch of labs and records I had handy.
With the steroid taper the rash I had on my ankle came back a few days ago and has been super itchy. I've been ridiculously itchy every where since yesterday. Tonight I started breaking out in hives. I called my PCP and she called in a cream for the rash on my ankle, wants me to take a Benadryl on top of my night time prescription allergy med. (Which I've done, and I'm still itchy and have hives) And start taking Zyrtec in the morning.
The first time I tried Xeljanz for my RA I had an allergic reaction (hives), and was taken off of it. We tried it again with the added prescription allergy med because I'm running out of treatment options and hives aren't exactly deadly. The second time didn't seem to come with any problems. Now I'm wondering if the steroids were keeping the hives at bay this time. Were. Bah. So itchy.
So yeah, that's been my day. It sucked. I think it's really statisically improbable for so much shit to go wrong in one day, but that's my life sometimes. I'm going to finish watching an episode of Supernatural, go get a shower, and try to get some shut eye. Tomorrow starts the battle all over again. Hopefully it goes much better.
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