Yep its been a long time and my excuse is that i have been very busy. But the real reason is that i have the attention span of a gnat! and so the novelty of blogging wore off, but now that a friend reminded me about my blog i decided to get back into it. Probably is as therapeutic as seeing my shrink and a whole lot cheaper! Not that i don't value dear Daniel my shrink - dear boy sits there and listens to me rant and rave, doesn't blink an eyelid when i say the EFF word and offers me coffee and tissues. What more could a girl want??
So i guess an update is warranted. I cant be bothered going back and reading my previous posts so if i repeat myself..too bad :)
Now, in no particular order, here is the latest and greatest info on Christies Condition:
- admitted to Children's Hospital @ Westmead for cystogram, pyleogram etc - results normal except for some 'vaginal pooling' (shhhhh don't let her know i said the V word .. she gets a bit embarrassed) which just means that when she pees it kind of runs back into the Vag and can cause a UTI. solution = sit backwards on the toilet to pee. Now in theory this is easy enough. Reality is a little diff however. Try being a tiny 11 yr old, having to pull ur dacks off each time u need to pee, spreading ur legs around a big, hard edged loo seat; when ur busting (remember she can go from not needing to pee to needing to pee faster than a race car goes from 0-100k's!) and add to that the next problem she has:
Greater trochanteric bursitis in BOTH hips - check out the link for details, but basically its extremely painful and can last for a long time. She has been prescribed Naproxyn for the pain and it helps but if she forgets to take it (or more to the point I forget to give it to her) - she sure suffers! So when going to the loo, trying to sit backwards is very very painful and not always something she remembers to do (i wouldn't either if it hurt)
Greater Trochanteric Bursitis
Most recently she has been advised to have braces due to 2 of her adult molars having emerged rotated 180 degrees, her bite not meeting and one tooth behind the other. Now if it was purely for cosmetic reasons i would say hellllll nooo... BUT because it can cause quite a few problems to leave them the way they are... well we wont be going on an overseas holiday for the next... rest of our flipping lives - omgosh.. quote number 1 is $8000. Needless to say, we are getting a second opinion. I may look like a cow but i ain't a 'cash cow'.
She has also seen the cardiologist and her heart is just fine.
- Gastroenterologist - diagnosed GERDS & Irritable Bowel Syndrome but was not keen to do any biopsies due to the risk of bleeding with people with Ehlers Danlos. Medication prescribed for both issues.
- Tested for Celiacs - negative thank God cuz i think that woulda been the straw that broke the poor camel (or cow)
- another UTI diagnosed today - more antibiotics
- Vitamin D levels only 35 - should be at least between 80 and 200. So Vitamin D tabs prescribed
- Distance Education started about a month ago - loving it!
- Physio/hydro yet to start but appointment booked for next week
Now.. to the cracked but not scrambled part.. feeling very very overwhelmed, stressed and about to crack! I feel as if one more person asks something of me i will just implode. Its taking all my self control and patience not to screech like a banshee at the kids. Poor Declan is feeling rather left out and ignored and unloved because of all the attention Christie is getting. So when he says 'mum please can u make me a hot chocolate? i try not to flip out and tell him to make his own damn drink! Even at 15 he is still my boy and i know he craves my attention. I just feel TOTALLY SUCKED DRY.. not another thing to give.. I saw my shrink which helps but the main problem is that my memory fails to recognize the need for it to remember to take my bloody medication on a regular basis.. not regularly IRREGULARLY! I have missed it, doubled up on it and i can tell i am going downhill rapidly. Desperately need some time out and i am my own worst enemy here because IF i get the opportunity to have 'ME' time i cant stop worrying about her, or i am too damn tired to be bothered doing anything. Sadly, when i get like this i tend to withdraw heaps and my world consists of me, my family and that's it. oh & Face book. which is an awful thing cuz my friends neeeeed ME in their lives :) but seriously, i need to get my s*** together, take my meds, stop eating choc and get back into the real world.
As my dear friend Cathy says - "its ok to visit the pity paddock, but don't move in".
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