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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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#61 | |||
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Heya,
Well... I have just refused to remain in the house alone with Charlotte - I even explained why I was upset and she couldn't see a reason why or understand. Slightly worrying as she graduates as a nurse in September! Oh well. I survived the 48 hours with her! Sorted a new "treatment" of Charlotte. If she is helping with giving me a drink/ feeding me then I dribble (purposefully) everything she gives me - (hey, she has stripped all my diginity anyway, so I just don't care anymore), makes her look rubbish in front of mum and Ben and makes her have to clean it up. Always funny. I've had a really frustrating couple of days where I've been well enough to WANT to do something but doing anything at all makes me feel rubbish as hell and end up back feeling rubbish. But, I did accompany some friends whilst we walked the dogs which was brill!! (but this suggests I am moving in the correct direction to be wanting to do something and feeling up to starting it). I have also found a new carer, unfortunatly she goes to Oz soon but she is VEGGIE! and her mum use to teach me and is willing to come and lend a hand (and VEGGIENESS!) when needed! I saw the neuro (I think I told you all?) he doesn't think there is anything else he can do - so had the botox shots and he won't/ can't do anything until after I see the pain drs and the neurosurgeons again. I am going to push the idea of a pump and see if that achieves anything and am going to mention the high level epidural. At the moment I am almost willing to try anything! I was so miserable when I came home from him, he is an amazing doctor and he is really nice - he really wants to make a difference and to improve my quality of life but this time he just didn't have any suggestions. Decided on a great project, got all the photos down from upstairs and am going through them sorting them out, admittedly I only tell people what to write but it is pretty interesting! Also, the occupational therapists (they assess you for equipment and change the house around to make it better for wheelchair access etc) are coming out the house again on Thursday so they can look at the house. My OT at the moment is just a general community OT but she has persuaded the MS area OT to come out as well - as my neurological/ physical symptoms are very similar to MS (floppy/ paralysis/ spasticity/ very little control of body etc) so hopefully she'll be able to sort the house out so it's abit better and more accessible for me and will hopefully stop everyone from having to try and vault over an armchair when I'm in bed to get from one end of the sitting room to the other! Ada: Thanks babe, How did the stim turning up go? hope it helps! even if you voice does go weird - how did you ruin the TV? Molls: Thanks babe, Well, you are in the US - get hit by the bus and then claim compensation - you will be able to buy a small tropical island and drink nothing but pink alcoholic drinks with straws on the beach - and drag S out with you!! Hope things are improving and that your bod is coming back together and that the doggy gave back your specs! At least having all the cognitive tests will prove, scientifically, that you have a brain, and that it is functioning (well, to some degree!). Hope - Thanks for the spoons! How's the pump going? are you back up walking now? LinMarie - Thanks babe! Hawaii sounds great! I still haven't decided where I am going, it all depends - suddenly the air lines are suggesting I will have to be stretchered and not allowed to fly, so depends on what they say as to whether I will go somewhere by plane or not - it's something ridiculous like £25,000 return to go by stupid ambulance plane etc. It is so thick. So, going to try some other airlines and see what they say - otherwise it will be either a driving holiday or a cruise of some sort!! Artist - Thanks babe! Well... Charlotte is pretty horrific at people contact and just could not understand why I am cross and frustrated. I explained everything to her and she still doesn't get it. I so wish I could give it to her for a couple of days, but in the end, she is never going to get it so I have just refused to be left alone. LOL about care packages from the US! All I did was when mum and I were going through what she was going to get whilst she went shopping I made her remove any food that Charlotte eats off the list. Petty, but made me feel so much better. So now she has to eat veggie food or starve!! HAHAHA!!! Desi: Thanks babe! I need someone to kick Char real hard - fancy a go? I would but really need someone to kick her hard on my behalf! I think, like I said above to Artist, that I may have got my own back on her vaguely. I am still so shocked that she ignored things like veggieness - to me it is something really important just generally and having it ignored made me so mad!!!! Oh well! Well, if you ever come over to the UK come and pop in (and kick Char!) Mary: Thanks babe! So very true about the what goes around comes around. I am definetly hoping for a come uppance - one I can preferably watch would be brilliant (only thinking perhaps a broken ankle or something, or, no, something really embarrasing, broken tail bone or something which meant she couldn't sit down or something (Oh, I know, a friend of mine burnt the insides of her thighs holding a cup of tea between them and became John Wayne for a couple of weeks and had to try and waddle in dresses to avoid her thighs going close to each other - now that would be funny!!! Carose: Thanks!!! LOL babe! now, as artist said, it would be WW2 again!! WOW! Thanks for the offer babes! How long have you been veggie? was it a moral or a health thing? Mine was a mix of both really but probaly closer to health stuff. I go through periods of being stricter with myself and going specifically juice vegan. It's a shame that where I live is totally isolated (well, no, it's a village of about 100 people but as a community we have nothing nearby and no take outs otherwise I would have stolen your idea! I have now got it sorted though (I think). We became so desperate for carers over the weekend my mum thought of my babysitter when I was younger and rang her - so she came over and looked after me and is a veggie! woohoo! But thanks so much for the offer!!! (If I lived anywhere near takeout I'd have taken you up on the offer immediately!) Thanks everyone so much! you can't believe how much you have all helped to get through this!!! All my love to you all Frogga xxxxxxxxxxxxxxxxxxxxxxxxxx |
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#62 | |||
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WOT! Ben? How and when did he pop up at home? Tell all! Give us some dish!
Last edited by mollymcn; 06-18-2007 at 10:08 PM. Reason: forgot the 'up' :) |
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#63 | |||
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You are an outstanding person!!!
Wish I lived close by cause I would take a turn as carer just so we could visit. I really admire the fight in you, it keeps the fight going in me ![]() I always have you in my thoughts and prayers. Love ya sooo much ![]()
__________________
. Gone Squatchin |
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#64 | ||
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So sorry for your pain frogga, I hope your breathing gets better, that is one of the most terrifying things. you are in my prayers. CZ
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#65 | |||
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Heya,
Well, yet another whingey post. Saw the Occupational Therapists and now need emergency track hoists. Also had long despairing wails from the OTs about what is happening to my skin (pressure) and my feet (well, they are the same as normal, but they got terribly upset about them!). Now on new fun routine of rolling etc. Such fun! Molly - will PM you! Allen - would love to meet you some day! you are so great! how is the new grandbaby? CZ - luckily the breathing has improved!! Just wish the movement would come back! Did you find the ketamine coma helped you? All my love to everyone and will attempt to catch up on posts I have been meaning to answer! Froggsy xxxxxxxxxxxx PS Roz, what have you been up to?? you have been quiet! |
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#66 | |||
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So glad to see you popping up again. Now am concerned about your feet. Perhaps the OT thinks your footwear is out of fashion. Patent is a fashion leader this season; bright colors too. Perhaps something in a snappy orange, strappy sandal?
![]() Last edited by mollymcn; 06-23-2007 at 09:25 PM. Reason: Increased topamax dose caused error in verb tense. |
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#67 | ||
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Hi Frogga,
Just wanted to pop in & tell you I'm thinking about you. I hope your situation is improving - Someone better than your sister to care of you. I'm so sorry to hear about all the equipment you need. I do hope & pray you get physically better soon. You sound like such a nice, upbeat person. I wish you lived around here so I could visit you. Linmarie ![]() |
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#68 | |||
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Yo Molls,
Definetly. That is the issue. I agree that orange sandles will help no end! I will get mum to dig a pair out of the wardrobe right now, clip my heels together and fly off to some place in OZ where my feet become straight!! woohoo!!! love ya babes, hope you are ok!!! Linmarie - would love to be able to meet you too! how are you doing babes? Love ya'll Froggsy xxxxxxxxx PS Would love to meet you ALL!! but you all selfishly live on the wrong continent!!!! |
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#69 | |||
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Frogga, i would LOVE to come to England to meet you in person. Honestly I would. Just get the NHS to cover my plane ticket and I am there!
However, I am a bad cook - used to be a good one, but all my drugs killed my appetite so now I cook only a few dishes like ... Hm. well, virtually nothing. My friend Serena feeds me. And occasionally my parents throw biscuits at me. What's new with the carers and strange bits of equipment? Hoists and whatnots? have they helped? S told me a ghastly tale of determined maternal ballet lessons?! Egad woman, say it isn't so. My bad bichon frise had to be rescued yesterday from plunging down a woodchuck hole after a King Kong sized Chuck. How does your doggie fare? |
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#70 | ||
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Junior Member
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Quote:
Betsy Ann |
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