“She could get you in. I am going to get you in.”
She wasn’t screwing around, but I wasn’t sure I completely believed her either. I’ve been waiting for a referral that my insurance would take since March, and there was my second nephrologist, who was clearly pretty concerned about me, telling me she was definitely going to get me in to see a rheumatologist. Well, she hasn’t quite got me my rheumatology referral yet, but she has got me something nearly as good.
Late last week Master Pravus and me got a call from the second Nephrologist who wanted to speak with me. She is very nice, and she seems very concerned about me and like she really wants to help. The only doctors I get this vibe from right now are this one and my Neurologist. The other ones are fine and all, but they aren’t really doing much to help progress my health, more they are just watching and waiting while things get worse. Regardless, my good news!
She got in touch with a lot of my doctors and spoke with many of them. One in particular being the geneticist that diagnosed my connective tissue disorder. Thing is, he doesn’t do much after diagnosis. You get a nifty paper saying what you’re diagnosed with, and then you go off on your merry way, distributing this paper to your doctors and hoping they know about your illness. Geneticists are busy people. She talked with him though, and he has agreed to see me again.
The reason why this is so significant, is because he is in the big hospital where all the really, really good specialists are. After speaking with Nephrologist #2, he’s also concerned that I’m not getting the care I need and he’s willing to write me referrals so that all of my doctors are at the big fancy hospital. He does need to see me again before he can write the referrals (I haven’t seen him in five years, so that makes plenty of sense to me).
I am going to get the best possible care available to me now!
The Nephrologist said I didn’t need to switch all of my doctors if I didn’t want to (why wouldn’t I? I like them, but come on! FANCY SPECIALISTS WHO WILL KNOW MORE ABOUT MY ILLNESSES AND TAKE MY INSURANCE!) but that she’s really concerned about me and she thinks that if I don’t get better care I will be disabled for the rest of my life.
I couldn’t agree more with her. These past couple years have been absolutely terrible and I’ve felt completely neglected by my GP, who has given me only one referral in all this time. All of my other referrals have come from the emergency room. We have just felt helpless as I’ve declined so much. I was never completely capable and always needed a little help, but I went from needing a “little” help sometimes to needing help daily with everything, and even having to buy an alert button! It might seem like that’s no big deal to most people but I’m barely thirty and I shouldn’t need something like that.
There are a lot more things that I haven’t blogged about going on with me medically, and I don’t plan to either, but the point is we feel like there should be more help for me and even though we know there is no cure for any of my conditions they should be able to be managed or at least followed better. So now my best wishes have been answered by the second nephrologist who has gone completely above and beyond to help me. I don’t know how she got the Geneticist to agree to write me a bunch of referrals but she did!
The only problem? We’re back on the waiting train, people.
I called for an appointment as instructed and they told me that they had a fourteen month wait.
“We’ve seen you before though, so we can squeeze you in at the end of October, and we’ll put you on the waiting list in case there is a cancellation.”
Oh for fuck’s sake.
I knew it wouldn’t be fast, but three months to be seen again is tough. Then, it’s not as though he can write those referrals right there and then. And then, it isn’t as though the second the referrals come in I can get an appointment the following week with my new specialists. It’ll be at least a few more weeks or months depending on the specialists. So, there’s that.
I do have an appointment though, and I know for a fact that they take my insurance. So, I’ll be heading to the big hospital in a couple of months where hopefully they can help me feel better. Maybe. I hope so. All of this waiting is really hard, especially since I really need to get more treatment but I’m hanging in as best as I am able to.
In the meantime? My current mantra:
“Put it out of your head and don’t think about it.”