Our days together went pretty much like this:
"Take me now Michelle" (lifting my eyelids and sticking his face 2cm from mine).
"Well I really don't want to. I'm tired and I want to sleep in".
"Take me now (pout). Take me now, take me now, take me NOW"
"Okay. Okay. I'm getting up. Geez Louise take a chill pill".
"Take me now". (stamping feet and pouting like a two-year-old).
"All right I've taken you. Will you shut up and leave me alone, I'm tired".
"You can't lie down. You have to stay up and spend time with me".
"Listen buddy I don't really want to do that".
"Well I'm going to scream in your ear, poke you in the eye and jump up and down on your chest if you lie back down. In fact I'm going to do that anyway cause I find it fun".
"Okay okay. Can I lie down in a little while"?
"Nope. Have you seen that episode of Buffy with the creepy floating Gentlemen? Remember, I'll scream. Oh, and in four hours you have to take me again. And then again four hours after that. It's all about me lady".
"I don't think this relationship is going last".
"I don't care.
"You're a bastard Midodrine. Have you heard of Lorena Bobbitt?"
So after a delightful pain-filled trial I have kicked him to the kerb. He and Mestinon can go hang out together. No doubt they'll have their own reality show soon, The Bastard Bachelors, complete with smarmy host, and a group of desperate, fame-hungry, vapid, peroxided, 20-somethings vying for their attentions. Good luck ladies.
Since I gave him the "It is you. Not me" speech, I've been walking round the house singing Paul Simon's, 50 Ways to Leave Your Lover.
Now as happy as I am to be out of such a bad relationship, it has left me in the middle of no-man's land. My cardio can no longer suggest any new meds to try. I knew it wasn't going to be a good appointment when I was lying on the bed in her office and she looked at my legs and went "Hmmmmm" and did her "Oh Shit" face. Apparently if Midodrine was going to work my legs would no nolonger resembles those of the rotund, purple McDonald's character Grimace. After much hmmmming and scratching her head, she actually leaned back in her chair and said "I really don't know where to go from here".
Woo Hoo just what you want to hear from your specialist. She did give me some huge insights for my money though.
- I'm really ill (no shit Sherlock).
- My venous system in shot (ahhh yeah)
- There's no doubt I have dysatonomia (didn't we figure this out a couple of years ago).
- I don't fit into any of the standard sub-types (again, didn't we establish that a couple of years ago?).
- I have "Michelle's disease' (see above parentheses).
- I don't respond well to the available meds (Duh!).
- I'm not a nutter (parentheses people).
$120 well spent I say. She did say if I (who knew I'm an autonomic/cardiac specialist?) can come up with any ideas she's happy to write a referral. There are a couple of long shots that potentially may be of use, which I'll get into if they come about. But I'm pretty sure from the look on her face that my chances of success are about as good as my chances of actually becoming Heidi Klum. I know she cares, is frustrated, and is trying her best, but I'm pretty sure a "Dear John" letter is on it's way to my door.
After many hours of internet procrastination/research I did run across one med that might just be worth a try. I wonder if my cardio will write a script?
What do you think?
Okay this is a late addition but I only just saw it on a friends FB page and I feel it may be the solution I've been looking for.
Hey girlfriend, this dead end sucks big time!So disheartening :( I was wondering how the midodrine was working, glad you sent him packing, wishing there was something that worked for you.ReplyDelete
Michele - thanks babe. These things happen I guess. At the moment I'm consoling myself with chocolate and watching a Supernatural marathon. Is there nothing chocolate and hot guys can't fix? Ooooo better idea. Maybe I can get a shirtless Jensen Ackles to feed me chocolate? That would make me feel better.ReplyDelete
Maybe I need to get some butterfly's on my toenails too :)
So sorry to hear it didn't work out. Boy, can I relate to that conversation you had with your specialist, I have had about 50 of those.ReplyDelete
At least she had the good grace not to try to blame you for the medication not working! Hang in there, and I hope that chocolate and butterfly combo works for you...
OMG your legs are purple when you lay down??!!ReplyDelete
Are there any other specialists you can consult with? Can you ask your specialists to consult with specialists from the USA, there are some on the DINET website, they probably have seen more cases then she has. They may have some good ideas?
While it's nice to have some notoriety, it's probably less nice if that notoriety is having a disease named after you. :( I imagine it's pretty frustrating for a specialist in a disease to not even know where to go next. Less frustrating than it is for the patient, for sure, but still. I so want someone to give you the drug that works miracles, that banishes Bob forever and let's you live an unhindered life again.ReplyDelete
Purple legs does not sound fun at all. Unless you're Prince, I guess.
Wow...that is soooooo crappy about the drug. That drug was worth dumping and torching his house. Sounds TERRIBLE. Once again, I find myself waning to beam you chocolate. What is my deal!?!?
I cannot imagine how frustrating this has been for you...I'm gunna sit in my red chair and pray for you today- cause wow- what a ride...I just posted about being on a roller coaster, but after reading this...I'm like on a tricycle and you win the roller coaster seat... for shizzle...I'm so sorry Michelle- you have been through SO MUCH. Thanks for sharing all of that with us- your fan club!!
So the last video...yeah...could not stop laughing. Thanks for bringing a giggle fest on. Good stuff.
Many hugs to you,
It's so weird that you posted this. I just published something featuring my health as a character too! It helps to get the rage out to have that confrontation, doesn't it? In a humourous way, even... It highlights the ironic absurdity of the whole scenario: a medication designed to help you actually messes you up.
How was Midodrine supposed to help you, exactly? He sure sounds like a jerk.
And Sarcasm is a medication most doctors seem to need...
You're so talented to be able to write about something like that and make it as entertaining and funny as you did. I have to admit I laughed several times, partly cause I can relate to much of it (though not the same illness) and partly cause the way you've written it is just so brilliant. I'm sure most people with a chronic disease, let alone one of the ones that presents differently from person to person have had a very similar conversation with a specialist. My most recent cost $360 and the first thing out of his mouth was 'well you've seen Prof...., so what do you think I can do for you?!'. (As it turned out taking my money at the end of the consult was about it!).ReplyDelete
Emma - I thought you might have heard something similar :)ReplyDelete
Anon - I like to think my legs are fashion forward and doing the purple is the whole new black dealio. My doc has taken my case to international conferences in the hope others might have an idea, but alas I continue to be freak girl.
Veg - yeah me and Lou Gherig so cool. Ooh Prince maybe that's why I've been listening to "Kiss" so much lately.
Feelin' the love :)
Lucy - I love you for wishing me chocolate. Will eat extra just for you. Lets just go with the mutual fan club :)ReplyDelete
Loveable - Go sarcasm!! Midodrine is the most potent vasoconstrictor on the market. It's supposed to squeeze all my blood vessels tight to increase my bp and keep me upright. The pain was shocking so glad to send him packing.
Neroli - you have to laugh otherwise you'd punch them. Wow for $360 you want something in return other than that crap. David keeps saying we are actually paying for their golf fees as opposed to getting a consult.
yes your legs are fashion fwd...big savings on opaque tights!ReplyDelete
my legs are purple when i'm sitting or standing but not when i'm laying down, thats why i was so surprised.
i thought they were meant to go back to normal coloring when laying down.
have you seen a geneticist? they may have more experience in rarer conditions.
Anon - Sometimes they go back to normalish but I always have that 'feathered' blotchy look cause the drainage is so poor now. I'm looking at having some venous testing as they are working so poorly so I'll see how that goes. I have small fibre neuropathy as well, so that may be contributing to the issues. Thanks for the suggestion, I have tossed up about genetic testing, but at this point I'm so over being poked with needles that I'm having a bit of a break.ReplyDelete