A Word From Our Sponsor XII

Well my short lived affair with Midodrine is over.  I should have know that he was going to be trouble with all the effort it took to arrange our first date.  High maintenance, and a bastard to boot.  It was all about him from day one. 

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?

Cheers
Michelle :)

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.

A Word From Our Sponsor XI

Well I have reprised my Emmy Award winning role as pharmaceutical lab rat once again this week.  After months of feeling like I am back to day one of my turbulent relationship with Bob, my doc recently uttered the delightful words "It may be time for a Midodrine trial".  Of course that led me to a full on Broadway dance of joy complete with jazz hands.  NOT!

Yep, trial time once more.  Treatment for Bob is basically a dose of medicine with a side of guess work.  What works for one doesn't work for another and may in fact create even more problems than what Bob can throw your way.  Joy.

Those of you who have read my blog for a while will know about my war with the Mestinon beast last year (you can revisit the insanity here, here, here, here, here, and here).  Now I did manage to slay it in the end, but it was a hard fought battle and led me to an unexpected and very unpleasant relationship with my porcelain lover, so I am less than excited about yet another foray into the unknown.  (Reading that back I realise that I sound like I have lost touch with reality a bit, but it does make sense, really it does).

Midodrine, like Mestinon, is like one of those relatives from "that side of the family".  You dread when they come to visit and know that if you don't hide the silverware and your wallet, you may end up with a $5,000 credit card bill linked to something called "Busty Asian Babes", and searching for grandma's silverware in a grimy pawnshop.

For those of you who are new or simply can't be bothered going back over past posts (not judging, just being realistic), Mestinon had been implicated in Gulf War Syndrome, YAY.  Though on a positive note, if ever there was a nerve gas attack in my lounge room I did stand a better chance of survival. See silver linings can always be found, and I am silver linings girl.  For example, when I heard that Johnny Depp didn't bathe, my first thought was what a great chance to offer him a sponge bath.  Silver linings people, sliver linings. 

Now my new bestie Midodrine, has it's own delights.  If you lie down within 4 hours of taking it you risk stroking out (luckily I get to take it 3 times a day).  Yep, obviously that makes it the top pick for someone with Bob, cause I never need to lie down.  Bob symptoms vs potential stroke.  Hmmm what to choose?  These are choices we are forced to make at this point in the cutting edge of Bob research.  Now I am still trying to find the silver lining but I'm sure it's there.  They are small so no big horse pills to swallow.  And they are colourful, little sunset orange pills, and I like colour.  Okay so they may be pretty crappy silver linings but I'm trying people, I'm trying.

So far I've had no run ins with my porcelain lover, and that is a good thing.  Lets face it hooking up with an ex never works out well.  However the excruciating headaches, exhaustion and chest pain are a little off putting.  Yesterday I had to go to the train station and by the time I had reached the ticket box I felt like I was having a heart attack (no exaggeration involved), which really wasn't all that pleasant.  Considering I was overtaken by a little old lady with a granny trolley I'm guessing it wasn't that strenuous a walk.  This does not bode well for my plans of exercising.

I wont bore you with the trials of even getting this stupid, potentially fabulous drug.  Suffice to say, it's not on the PBS in Australia and is considered experimental.  This means tedious paperwork, dealing with useless government bodies, the selling of my left kidney to pay for it, and lots of beating my head against a brick wall. 

On a brighter note I was recently asked to be a writer on a new group Dysautonomia blog called DARE: Dysautonomia Awareness Rarely Experienced.  I am joining a group of fabulous ladies (still unclear why I was asked but hey I'll go with it, until they realise their mistake and bring out the torches and pitchforks), from all over the world, different ages and backgrounds.  The aim is to raise awareness, to provide a central information hub and an unrestricted voice for those on the Bob journey.  I will still be contributing to the fabulous 12 More Pages, so now I just need to find the extra braincells and energy to get myself organised.

So in the words of the brilliant Monty Python (yes I'm going through a Monty Python phase), I'm following the philosophy of Always look on the bright side of life.

(Some days you gotta laugh even if you make an ass outta yourself).

So bring on the Camembert.

The Lab Rat Michelle :)