Apologies again, I am still feeling a bit down and frustrated. This is basically a continuation of my rant from the other day, so if you didn't like that entry, you won't like this one either!
Sure enough, I got an appointment card in the mail on Monday from the rheumatologist. (I'll never understand why they can't just phone me with the next appointment time. But whatever - at least it reached me before the postal strike!) My next appointment is ... drumroll... July 26th. Yep, awesome. That will make it a month and a half since I received my last ridiculous half-dose of IVIG before I even see her about rebooking another one (which will, guaranteed, take at least a couple weeks after that before I can actually get in for treatments). So at least two months between treatments, and the first one was a half-ass treatment at that. Thanks, Dr! I'm so glad we had that great discussion last month about receiving a FULL COURSE of IVIg. Now I just have to pray that the rash (and the muscle symptoms!) stay manageable until then.
On that note, I saw the dermatologist that she referred me to today - despite the fact that I have seen 2 derms in the past that had nothing more to offer, she wanted me to see another one in case a magic solution to the DM rash has been secretly discovered in the past couple years. Sure enough, he spent about 10 minutes with me - looked at the pictures I have of the rash when it was bad in February and again a few weeks ago, and he examined how it is now - and he said "Wow, you sure respond really well to IVIg. If I were you, that's the route I'd want to go!" THANK YOU. Now can you please say that to my rheumatologist so I don't have to fight her every time I need treatment?? (The short story - I took 2 hours out of my day today to get a prescription for a moisturizer!)
I'm starting to seriously consider trying to find a different rheumatologist. I have had nothing but problems since I started seeing her two years ago - and I had another rheumatologist before her, so I know how things should work! We apparently just do not speak the same language, and I am so tired of fighting to make myself heard constantly. I had such a terrible time with her in the beginning though (months and months without treatment because she didn't believe that I was having a flare because my CKs were normal), that I am also terrified of starting over with someone else. At least she knows my history and the way I present with flare-ups now.
On that note - I am really sick of doctors altogether. Today, as I was bored waiting for my derm appointment, I examined my day planner and did a quick tally of how many medical appointments I've had in the past while. Since the beginning of May (only 6 weeks), I have had 10 medical appointments!! (And this is only medically necessary appointments, like rheum, optho, or family MD, not the acupuncture or naturopath appointments I've been trying on my own). That is more than one per week! Each one takes at least an hour (usually more) out of my day. And the crazy thing is, I am a DM patient who is supposedly doing quite well! But how am I supposed to hold down a job when I am constantly leaving for appointments and tests and treatments??? How do people do it?
Do you want to hire me? I'll be a great employee for the two days per week that I am actually able to work!
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