Monday, 7 December 2009

A Word From Our Sponsor IX

Well I'm back from the wilderness finally. I think. Maybe. We'll see. Fingers crossed. Touching copious amounts of wood. Oh lord, I know I've jinxed it now, might as well smash a few mirrors and seek out a couple of black cats. Here puss puss puss.

Thanks to all for the well wishes, they were greatly appreciated. I will get around to answering them but it will probably take some time as whilst the mind is willing it is also beset by a rather thick brain fog at present. So sorry all, but at least you know I'm just brain dead and not being a complete cow and ignoring you. For anyone who has been hanging out for the next exciting instalment of the Adventures of Michelle and Bob, it may be time to get a hobby cause I'm really not that exciting. Actually dull may be the best way to describe my life and mental capacities at present. I do appreciate everyone checking back to see if I've posted anything new (makes my stats look good for very little effort on my behalf), so thanks for the perseverance.

Still on the recovery from my run in with that rather vicious wall. Turns out he brought some friends along and they all decided to play a hilarious game of Stacks On Michelle, which has left me rather bruised and battered.

It's been a long rocky road over the past month. My plan to be in the Guinness Book of Records for the best impersonation of a pin cushion is right on track. I've been poked and prodded, strapped up and down, zapped, scanned and sucked dry through copious amounts of blood tests. I even managed to have needles sticking out of both arms and a leg all whilst attempting to stand. I personally think they strap you down during these procedures so you wont be able to hit them with your pathetically weak arms each time they tell you to relax your muscles. I've also played the less than pleasant game of find the vein with my cardio for about an hour and found that I could still feel pain despite a local anaesthetic. YAY!!

My collection of acronyms is growing with the edition of SFN (I have chosen to rename it SNAFU as that just seems more appropriate at this point) this last week. SNAFU is Small Fibre Neuropathy, yeah exciting I know. Well you can take the girl out of the research but you can't take the research out of the girl, so I went on my usual path of trying to find out all I can about my latest edition. So first article, first line what do I find?, "small fiber neuropathy is increasingly being recognized as the major cause of painful buring sensations in the feet, ESPECIALLY IN THE ELDERLY". That's right "especially in the bloody elderly". Yep, I have added another old chick symptom to my list. That's so depressing. I really have to stop looking crap up. Ignorance really is bliss. Oh yeah, and the major drugs used to treat SNAFU lower you bp, which means I can't use them. I also get to be idiopathic girl again as I don't have any of the known causes of SNAFU. Woo Hoo!! According to my neurologist I'm "such a medical mystery". Well fanbloodytastic, that just makes my day. But wait there's more. I also have the most pathologically abnormal reflexes she's ever seen in someone who hasn't been diagnosed with a serious neurological condition. Surprise, surprise, she has no idea why. Well Merry Christmas to you too lady. I so need a holiday right about now.

I did manage to get out for one night which was a bit of a miracle. One of my physio chicks has made it back to the real world of ballet so we all crammed into a car to watch her performance. Between the four of us we managed to form almost one whole brain and not only picked everyone up, but got there, got a great park, found our seats and got home again in one piece. A triumph for all involved. So a big shout out to Sarah and her pointe shoes. I have no idea how she stands, let alone jumps on those things, especially with such grace and ease. Rather knackered the next day but so worth it.

Speaking of physio, we have recently been forced out of the hospital to a new gym. Our class is lead by a women who I believe is the long lost sister of the Supernanny, complete with the patronising, romper room accent. Well it turns out that we are "unasseptible". We talk and laugh too much, and are wasting her and our time. Delightful. We are also "sneaky", what the hell? I feel like I'm 12 again and have been caught hiding my over-cooked peas under my mashed potatoes! Sneaky my arse. So sorry our neurological and other illnesses mean we can't get into the gym bunny vibe. I am having trouble lifting a half kilo weight because I have a neurocardiogenic disorder (and apparently now SNAFU) not because I'm being lazy! Of course we are rather horrible for trying to make it all a bit bearable by having a laugh! So I must say I am not in the least inclined to make the effort to go back except I decondition at the drop of a hat. Damn it. My bestie Kerri has introduced a new swear word to the world after a recent trip to Ikea, "fargrik" (apparently it means plate, but "plate you"just doesn't cut it ). So I have decided to say fargrik to you nasty gym lady, fargrik to you!!

Well that's about it in a nutshell. There's probably more and I've likely missed something super important that's happened, but its all really been a bit of a blur. I think it's less blurry now but I could just be delusional from lack of blood to the brain. So just read this keeping in mind that I may still be in oxygen depleted fantasy land (it's really quite a lovely land that one).

Cheers
The recently SNAFUed Michelle :)

8 comments:

  1. Good to hear from you again! Sorry to hear about your SNAFU diagnosis, just think, being a medical mystery makes you mysterious and special, too bad it isn't for something exciting like the ability to spit fire at your fargrig gym bunny. I say keep going to the gym, just ignore the rude remarks, I'd like to see her exercise one day with your body with you shooting orders at her. Thanks for the smile.
    :) Michele

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  2. Thanks Michelle especially for the use of fargrig in a sentence LOL Mind you Kerri has just informed me it's "fargrik" which sort of has an added punch to it. I'm blaming brain fog for the misspelling. We are a special bunch aren't we!! :)

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  3. wow youve been through alot. i check your blog to see where you were, now i know!

    how can the physio be so sharp? i would fox her and be, oh so nice, smile it confuses people.

    seriously hope you start to improve soon, the nature of this illness with its up and downs is a pain for sure. love reading your musings on life, especially when i think, thats happened to me. i too have a funny take on situations otherwise i would be permanantly cross. xxx

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  4. Hello arrived here via alice, lack of response to local anasthetic is one of the varied things I get having Ehlers Danlos one of those connective tissue disorders of the rarer kind. Just have to say its rare to read a blog with medical in the content that is so witty. Have had my fair share of physio nightmares so massive empathy for you.

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  5. Alice - thanks for that. It has been a rather cruddy few months. Not really sure if I'm on the mend to normal crappy yet. With christmas coming up I'm thinking I may be in over my head but we'll see. Maybe it'll be a christmas miracle! You have to laugh and as you say it's nice to know you are not alone.

    Achelois - Thanks for the physio empathy! EDS is a shocker too. Apparently common with dys too. I have a lot of hypermobility features as do others in my family but we don't meet the criteria. Having said that I could empathise with your blog as my hips pop out at will and always have. If I lay on them especially for a long time they hurt so much. Then there's my wrists and knees and shoulders and.... well you know the drill. Thanks for the "witty" it sounds way better than looney LOL

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  6. Just to say as only read your comment today - it is possible to have EDS and not meet the criteria as not all joints that are hypermobile are within the diagnostic criteria! So it is possible to have EDS/bjhs and not have a diagnosis simply because of that.

    Unless one has seen either a Professor B in the North or Professor G in London it is possible that the diagnoser may not be familiar enough with the condition or is sitting too closely on the diagnostic fence to be very helpful. Obviously not saying you do have EDS just a thought, particularly with the non response to local anasthesia which is definate feature of EDS as not common within the normal population.

    Also commonly hypermobile type EDS formerly k/a type III requires higher score on diagnostic scale and actually it could be classical EDS which manifests differently.

    EDS Vascular Type formerly k/a Type III can be confirmed by bioposy and hypermobile joints 'may' not be the presenting symptom. Hope I am not doing that eggs and grandmother thing here.

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  7. Hi, my name is The Girl from the Ghetto, and I'm a combo OH/POTTS "Bob," ha ha ha. Glad to meet another Bob girl and thanks for stopping by my blog!

    Hey, what is your record number of blood draws at once? In a three day period? Curious to see if you beat mine - 13 vials at once, and 34 blood tests in three days at Mayo Clinic.

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  8. TFTG - Thanks for dropping by. I've been trying to think about the vials not sure exactly. I had the test from hell about 6 wks ago. I had blood taken pre test at 3 height levels (it was an extreme tilt) and then after, I can't recall if it was 4 or 5 vials each time so that was either 20 or 25 vials over about 4.5 hours. I felt like death for about 4 wks after and still feel like I'm playing catch up. Plus I had my reg bloods a week before which was 6 vials. So probably in one day I beat you but maybe not over a 3 day period! Man there have to be better things to compete over LOL.

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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