Tuesday, 30 March 2010

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 :)

16 comments:

  1. Oh Michelle, My heart just ached reading that about the trial drug, I'm so sorry- that sounds terrible. No, it sound totally crappy. Ugg. Sending a hug your way. If I could blink and send my favorite chocolate to you, this is where it would show up on your desk.

    I look forward to reading your writing on DARE. Your writing rocks. Bob, however, does not.

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  2. Lucy - I'll take that chocolate. My whole body aches at the moment but I go back to the doc in 2 days so I'll stick it out and I'll see what she says. Maybe if I have a bath to soothe my aching body Johnny can come sponge bath me instead. Make it part of those 'Grant a Wish' schemes. Just a thought LOL. :)

    I've done 2 posts so far for DARE "Michelle vs The Brain Fog" & "Perspective". The other girls have written some wonderful stuff too, which I think goes beyond Bob to any chronic illness really. It's nice to have a community.

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  3. My dear, what a sh..y situation you are going through...however, I admire you for not losing your humor even now. I honestly wish you all the best & send some positive vibes all the way from sunny Greece...The stuff you write is a delight to read, congratulations!

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  4. Well I don't know what your problem is, man, that all sounds like tremendous fun. Ha, NOT. (What happened to the "NOT!" thing, it was so big in like, 1990?) Seriously though, it has to suck the most to have to continuously try different things in the name of having some normalcy in your life. I really hope you strike gold soon and find something that miraculously does all the things you need it to. Screw you Bob!

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  5. hi michelle

    im on the little orange tabs. they are unlicenced in england so they have to be imported from the u.s of a. touch wood, no side effects. hope things go well. not really with it at the moment. will take a look at dare. x

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  6. I just think you are brave being the guinea pig here. i want to write something witty but can't. I will look up this drug but trials like this worry me. I am old fashioned and tend to prefer the tried and tested medications. Not being able to lie down for all that time did I read that right? Does it make the blood rush about and not pool - I should go and look for myself. Please don't be a martr can't spell that and I used to be able to! Don't put up with utter s*ite. God I think you deserve a medal. I see people giving them away on blogs but have no idea where they get them from. keep us posted and please take care. Will go look at the linked DARE. Loving the humour today.

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  7. I am just in shock that you can't lie down after taking it and have to take it three times a day! (I'm hoping one of those times isn't 1am!)

    I am imagining you leaning up against a wall trying to have a vertical nap.

    Good luck - it goes without saying that I really hope it works. Fingers and toes crossed.

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  8. Hi all Blogger is playing funny buggers at the moment. Some comments getting through and some not. All coming to my email and I okay them but not coming on here. Have reported prob so hopefully it'll get fixed soon. Thanks for all the comments they are much appreciated.

    Okay just thought this may or may not go through so I may be talking to myself, that's okay though, all the other voices in my head will chat back. Michelle xx

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  9. Of course because I wrote that they have fixed it 3 seconds later. Always the way.

    Elie - I could take some sunny Greece right about now. With a big plate of Loukumadis (don't know if that's the right spelling, those little deep fried doughnutty things smothered in honey YUM). That's bound to make me feel better :)

    Veg - I have plans for a big 'NOT!' revival. If they can bring back shoulder pads and leg warmers I can bring back 'NOT!'. Who says I'm not making the most of my home time.

    Em - Yay that you have no side effects. Such a dumb disorder that we all respond differently to the meds. Mine are from the states too. Personally I'd prefer if they sent me Hershey bars as opposed to little orange pills.

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  10. Achelois - I agree with you. The hard thing is that the research is still in it's infancy so this is the best they have. The prob with it is that when you lie down you bp skyrockets, hence the stroke risk. It's the strongest med in it's category. So I get up at 9am have my first one, then 1pm, then 5 pm and try to make it to 9pm. That's a long time not to lay down for me. My sleep has been bad since I started it to so I feel rather shite. I see my cardio tomorrow so I'll be having a 'discussion' with her about it.

    You gotta laugh though. It all just seems so ridiculous now. I love that Monty Python song. I used to suggest to my physio that we play that and have vodka shots during our session. She just looked at me weird. Don't know why :)

    Emma - Thanks Emma. I have found a point where I can 'recline' without chest pain spikes and have power naps but it is rather uncomfy.

    And to everyone a big thanks for your concern. I think I probably sounded a bit wingy but I'm not that upset, its just the ground hog effect which is wearing a bit thin. I'm finding sarcasm and insanity to be the best mode of coping at the moment and highly recommend it. Big love to you all :)

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  11. Yes, that would be loukoumades, the ultimate comfort food. Good for the soul, disastrous for the hips :-))))

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  12. Elie - I am willing to put my hips in danger for a plate full of that happiness :)

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  13. For some reason, when I read this post yesterday, it wouldn't let me comment. Now I can't remember what I was going to say. Damn it.

    I hope this new med works out ok. Well...as ok as can be expected.

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  14. I have POTS as well. Do you work through all of this or are you on disability????

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  15. Anon - no not working since 2007 and don't qualify for disability unfortunately.

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  16. My doc prescribed Midodrine for me in November. The side effects were rough at first, but getting used to it. My skin and scalp still tingle two hours after taking it, and I have to go to bathroom every few minutes it seems. Usually can't tell if I have to pee or poop and if you guess wrong.....

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx