Heya...

newest issue is...

I have no equipment! Social services apparently thought I would somehow manage to be able to carry the hoists down with me and my bed - I pointed out that as it was it took my mums van, half my friends Jeep and my car to get all MY stuff home and my wheelchairs without working out how to fit an electric hospital bed, pressure mattress, hoist, slings and all the other rubbish that makes up my life into the car.

So. As my care has fallen through it now means I have no carers, mum is at work full time AND no equipment meaning that I can't get any carers in to work for me unless I am happy to be bed and bed pan bound until social services can provide me with the equipment that I am supposed to have. (I can't really be lifted at the moment because of the paralysis and my shoulder and as I'm not supposed to be lifted anyway because I'm 100% unable to weightbear with two destroyed ankles and osteoporosis no agency carers are allowed to lift me). Therefore I am now spending 18 hours or more a day in bed which is horrible if you can't turn or move at all independently, I am getting so frustrated especially as I'm in "my" bed - a water bed, which I just can't move at all on. I was in tears by the time mum came home through the frustration of being really uncomfortable and knowing that I have now got (another) pressure sore because of being in bed on the wrong mattress for too long. Agh!!!! It is so frustrating.

I keep telling myself to pull myself together and just get on with it but it's so hard. My shoulder is still not right and even having it strapped is really painful, I am going to ask my neurologist if he can check it when I see him next week because it has now risen about 3 inches higher than the other shoulder and collar bone. Stupid pain is so frustrating I just want to scream from it. However, on the good side, the burns I got from the heat bag - no dressings needed anymore!! :D they have healed okish! WOOHOO!! at least that's one thing I'm rid of!

The paralysis is continuing - I am still pretty scared by it but am trying to move on with it. I'm not going to let it continue to destroy my life. I think I'm just going to have to accept that this is what my body is doing at the moment, and although it's unfair, and horrible, and scary the only way to control it is to try and get used to it and retain as much independence as I possibly can - but that's going to be hard until I can get proper care in.

With the carers it's strange. I guess I hadn't really realised to what degree I had deterioated or how much help I need. I'd always told myself that I had 24 hour carers when I was at uni because I was away from home, I can't transfer/ go to the bathroom/ feed myself/ dress myself/ wash myself/ cook etc and so they'd be doing the "mum" bit with abit of care. However, suddenly I realise it's so much more and it takes up so much time. I have to be turned at night, repositioned in my wheelchair, have my splints on and off and on and off and on and off.......... meds, stretches, physio, someone with me whenever I leave the house. It's even more so now when I realise I can't change a radio station because I don't have environmental controls at home. I can't answer the phone, I can't let people in, I can't control the animals. It's scary realising how much this has impacted me and my life and I guess I mentally gloss over it, but being at home really make me realise.

Also - any suggestions. I am bored to tears. I can't use videogames or hold books (not until I move into the other bed). I spend alot of time "resting" because of the stupid migraines (Still have the amazingly horrible sunglasses to go with the horrible migraines!) and have some books on CD which are copied to my hard drive so I can turn them on independently. If I have my headset on then I can use the computer. But that's it. So - any ideas for trying to break the monotony of pain and the frustration and just... general AGH levels! I really need some form of hobby or something (shudder, the thought of turning into someone with...... HOBBIES! scary thought!).

Also, I need some thoughts on how to survive this weekend - Mum is working two 12 hour shifts (8am - 8pm both days) and I will be on my own (as no hoists delivered). So any ideas how I will manage? at the moment it looks like we may end up just having to catheterise me for the weekend or something.

Molly: as ever, thanks babe! S's fits are very similar to mine and I agree - they are horrible! My sister hasn't been home since I got here and is too much in "love" with new boyfriend to care that I am stuck in bed for 18 hours at a time because she can't be bothered to drive the 8 miles to our house to get me sorted. It's VERY frustrating!

Liz - thanks babe - your walking stick sounds awesome!! one of my wheelchairs is barbie pink - hey, disability isn't a must, it's a fashion choice (well. that's how I choose to look at it!). I had pair of amazing bright green crutches when I was on them and they ROCKED! they were so cool! Also my splints have always been painted by artistic mates so they look awesome! What type of dog have you got? I know what it's like - I have 2 dogs and now 4 cats and they all think that slobber helps!!!! they are so perceptive though! I just wish that they didn't think that by sitting on the most painful part, or licking it, would be the most helpful.

Artist - meant to say this - with taking the tablets with alcohol we were attempting to make them work more effectively without increasing the meds because of the ketamine issue. However, it always makes me feel horrendous the next day and makes the spasms/ cramps/ pain worse - but at times you need something to increase the potency.

Thanks Moonstar - how are you? did you get the CPAP in the end? I really hope they managed to help you with your sleeping problems.

Mary - Thanks! I use all of you lot as inspiration to kick me in the butt mentally when I get lazy or if I am being miserable about the RSD. For any of us to do anything at all is amazing, the fact that many of us manage to have semi normal lives is just amazing!

IHH - what is there to say? love you babes and hope things improve for you soon, thanks for being there!

All my love and hugs and thanks

Frogga xxxxxxxxxxxxxx

Wot?! You've blown my cover! Now you know that my friend with RSD has a terrible "carer" who staggers around in pain, can't walk half the time, has no energy, and is miserably depressed. And eats all the chocolate.

As for this weekend: You must call your mates and say H.E.L.P. What sort of help? 1. Get van and haul your equipment from uni to mum's house. 2. Haul their selves to your mum's house for Sat/Sun. 3. Overnight mail 20 books/music on CD. This is NOT a time for pride. You have a nice freshly healed lap to show off and display.
xoxoxoxo

Hey Frogga,

Just a quickie to say Hell and Damnation to your bedridden state, I'll try and think of ways of passing the time. BUT we've got major storms here, lasting for the next week they say - so I'm darting in and out of the net as the storm rolls over. Lightening blew out out the ethernet port on my favourite laptop last week (drat!!) - so I'm taking no chances!

I suppose your mates are now dispersed all over the UK, are they? Hmmm.

OK, big thunderclaps, be back later xxxx
all the best, huggies.. :hug:

Bad Day Frogga
 

Dear Frogga,
Boy, you are really having a bad day. I know the toilet thing can be tough to do properly especially if your balance is off. Maybe you could get some type of commode toilet to keep in your bedroom and just hang in there until your balance gets back.I had Lidocaine IV done in June 2006 and I couldn't even lift my head off the pillow because later I fainted and could not leave my bed for 5 days. I used a comode and I hated it but it was the best thing for me to do since everytime I got up I would start to pass out because my blood pressure was too low. I am on the waiting list at the doctors for the Ketamine IV in-patient procedure,which I hear is supposed to be much toughier than the Lidocaine procedure. Are the pills you take now a follow-up to the Ketamine IV treatment you had previously?? Just curious so I know what to look for when I get it done within the next 6 months to a year.

I feel for you being in bed so much because I have just spent about 2 1/2 years in bed too. I've just learned that I can't do a thing about it so I make the best out of everything. I find humor and prayers get me through this RSD nightmare. You have to keep your mind focused on getting better and being stronger. I now say to heck with everyone else and do the best I can each day. Sure there are days I want to jump off a bridge from the pain...but there are no bridges around here and I can't even drive a car to get there:.) So, I keep moving on. I pray that your days are getting better as I pray for everyone on this web site.
Take care,
Kathy d.:grouphug:

Sweetie...
 

((((HUGE HUGS)))) and lots of love back to you!! :hug: :hug:

Things better start improving soon for you!! :yikes: :frown: :Noooo: I wish I could send you some spoons... but I am barely making it through each day... wish the extra spoons would just appear in our hands! :Sigh:


Sorry about the way things have been going! :hug: :hug: You are so strong- stay that way. You are such a sweet person through all this rubbish and you always try to help others even though you are in a ton of pain. :hug: Sending lots of love! :heartthrob:

You might try investigating something using the net.

The net is a poor tool for many such things and this just makes it more challenging.

hi my friend...so very sorry that things are not going great for you these days..i am sending you all the strength i can tonight--you are not in an easy situation --it really sucks to have to depend on others the way we do--but somehow we seem to get thru each difficult and painful day-can't say how we do..but we do..yes i did get my cpap machine..it isn't working as well as i had wished..but i am at least getting 3 hrs a night before ripping it off my face..i seem to be sweating so badly that my tie-dyed t-shirt seeped thru and stained my pillow all pretty colors..
wish i was closer to come and entertain you while you are stuck in the bed--i will try to think of some games to help..but my brain doesn't seem to be there for thinking much these days..mindless tv is what i seem to space off into--
i will write some more tomorrow..rain is on it's way and pain is extremely high..wishing you a peaceful night--moonstar :hug:

hobbies?
 

hello..
How about a hobby like web$ight designing?
I took a dreamweaver cource last year that I realy enjoyed.. there are online classes too..

Here is an example of an online cource offered here in Canada for people with disabilitys.. I havent yeat :rolleyes:

http://www.cssd-web.org/

I hope things improve for you soon frogga and I must say that I admire your attitude emensly hon and I have read and been inspired by your posts and your adventures at the uni.. have you thought of mabie writing about your experiences say to magazines and school papers? some of your elevator miss-adventures for example made my toes curl.. and they don't do that.. people need eye openers.

Say a hobby idea that can broaden awareness of RSD.. many hobies can be something that you feel passionate about, say one that incorporates some of that drive you have.. that in itself can make the day an adventure for you..

*a blog where you can express yourself and yes help some other people adjust to their situations too.. see there is no reason you cannot help people as you have planned.. this way too*

A hoby is what ever peaks yr interest :eek: :p .

Big soft hugs

Sandra:winky:
Pssst.. Have a spoon or 2 on me.

Heya,

Sorry I haven't been around much! I’m in stupid pain and putting up with RSD. Hope you are all ok!

Well, my cripple equipment has now arrived and I'm really pleased with the bed - it's awesome - as well as the normal things you expect a hospital bed to do (rise up/ lower to get at the right height for someone to dress you, back up/ down, feet up/ down) it also has tilt - and so, I can tilt forwards or backwards up to 30 degrees! It means if I'm tilted I can now see out of the window, I can see the TV, I can have conversations with people instead of trying to talk whilst flat! and it means I can set the stars up (thanks Artist!). I am now living in the sitting room which is better because I am now more involved in what is going on and am now longer isolated away in my bedroom. YAY! even mum agreed that me being in here is not as bad as she thought. As before though I got quiet at my side of the house it meant I could go hours without seeing anyone which is annoying if you fall out of bed!

Unfortunately the paralysis is still here and I'm just going to accept it's RSD and start trying to pull my life together again. Have also decided I am going to go away this summer and I don't care where, so I am now busy planning a great holiday! I don't know where to go yet, but hopefully somewhere warm!!

My care is still screwed up. I am currently being looked after by my sisters’ boyfriend (Ben 2) who I have only met about 10 times, but he has taken time off so he can stay home with me. (Mum has gone away to a gardening show up in Birmingham and left me to the care of my sister for 2 days). He is lovely but I'm not sure I want to share everything personal in my life with him. I am so upset with my sister, mum specifically asked Char to keep the 2 days she was away off so that she could stay at home with me. Instead Char worked a late shift yesterday and an early today and is baby sitting this evening so instead leaving me with Ben who has never known anyone disabled at all and is after all my sisters’ boyfriend that I barely know!! Char is expecting me to be happy that he is willing to try and feed me or lift me or dress me. Yesterday I insisted she got me changed and because I winced when she grabbed my leg she left me hanging in the hoist whilst she had a temper tantrum and went “fine, if that’s how you’re going to be I won’t help” and stormed off. That WONDEFUL behaviour gave me a pressure sore and I’m SO cross about it. She has just made me feel so useless and just a pain in the **** that nobody wants to have to deal with. She won’t respect that I’m a vegan and cooked meat last night, then said it didn’t matter because she couldn’t be bothered to feed me anyway. So Ben had to sort it out. And she has taken my car without asking me. When she got me into bed last night she didn’t bother with any of the positions I am supposed to be in and just removed the sling and left, nothing like being stuck on the side with the pressure issue anyway and unable to move, not even with my head on a pillow and with me half way down the bed. I know it’s stupid but she has managed to make me feel stupid, really disabled, guilty of asking for any assistance, vulnerable towards her moods (which are totally uncontrolled), she has made me feel pathetic, stupid, a waste of space, a frustration to be hid away. I HATE being dependent on people so much, but when she does things like this it just gets to me. Before the last month or so I have rarely cried, only from either extreme frustration or extreme pain but now it feels like I am having tears of frustration and pain almost daily (unbelievable for me). It’s obvious that she doesn’t care, so why is she bothering. It’s not like I want to live my life like this either. I just wish some days I could give her this for a day or two, so she’d know what it feels like to be scared, to need to move, but to be locked into a body of pain and concrete which twists out of control whenever it feels like it. To learn how it feels to know you can’t fight back and that everyone has total and utter control over you – they get you up, put you down, carry you around, drop you, the could murder you and you couldn’t do a thing about it. You are a brain already buried in a coffin of a useless body. To feel that you are such a burden and are ruining everyone’s lives and knowing that if you weren’t there then they would be happier. Knowing that, at least with her, she would get no choices, nothing she wished for would be respected, nothing she asked for would occur. She would be given the minimum care to stay alive and then shoved wherever.

Molls: LOL, well you are sure beating my sister Char! and carers always need chocolate to keep going! No-one exciting has got to see my freshly healed lap yet dammit!. How is the total fish diet going?? (S), I spent loads of money on tapes and books at the weekend. Also I have re-found the joy of Radio - especially 4 and 7! How are you doing?

Artist: are the storms still that bad? Hope they calm down soon! hell and damnation, that's not even close to how I frustrated I am! See PM dr soon so am planning on begging for an epidural, I mean if I was a horse or one of my animals I would have been put down by now, so drs should be realising how bad it is and actually treating it.

Kathy d: Hi, thanks! How do you not go insane spending so long in bed? I can’t handle it I get so bored and frustrated. I am on low dose oral Ketamine as my “main” painkiller (like you guys take Vicodin or Percocet etc) and I find it works very well for me, I’m no where near pain free but it does help and has helped with the sensitivity. I have almost no movement from the neck down and so I have to be transferred by hoist at the moment. At home I can’t get into the bathroom but we are waiting for a tilt in space/ head rest/ postural support commode thing which can go over the toilet until the extension is built on. (I am going to have my own bathroom with hoist access so it will be so much easier then). Who is doing your ketamine therapy?

IHH – as ever babes! Thanks!

Imahotep – that’s what I’m doing! I’m currently planning my entire world trip and where I’d go in every country!

Moonstar – thanks honey! Can the CPAP be improved for you or is it something that will take time? I know when I had HBOT I HATED the masks so much because they were so constrictive. Do you feel better/ clearer headed since getting it and being able to get 3 hours good sleep? Hope you are ok!

Sandel – Thanks Sandel! How hard was it to learn about dream wave? I like the idea of keeping a blog, that would be pretty interesting and actually I would love to go back to writing. I wrote most of a book a couple of summers ago and then got frustrated with it and deleted it. You are right about a hobby being any thing I am interested in… Hope you are ok!

Thanks everyone for all your help and advice! All my love and hugs and sorry about the moaning!

Frogga xxxxxxxxxxxxxxx

Hi Frogga,
 

I just wanted to say hi and to let you know I am thinking of you.

You know you really need to follow your Drs. orders to go to the hospital to be taken care of. Maybe they will be able to give you some help that the Drs. can't in their office.

I'm sorry that things are getting worse for you and hope you start feeling better really soon.

Ada

Hey Ada,

Thanks babe. How are you? how is the stim working out ? I have been keeping my fingers crossed for you! I hope the immunologist can help you with the CFS. I was worrying about you because you have gone so quiet.

I hate hospitals. I just re read my post and realised how down/ depressed it sounded. I guess I'm just frustrated with going downhill. Things will improve but if I go into hospital they will just make me worse. I am yet to go into hospital and come out better than I went in and I hate being prodded and poked by drs!

Love ya

Frogga xxxxxxxxx

Hey Frogga,
 

I do know what you mean about hospitals. I can't stay in one as long as they want me to when I go in. I have panic attacks after a few days in them. My PCP springs me from them before my time is up. He tells the Surgeons if he has to come to my house to take care of me he will. I get hysterical in them I have also been overdose with Methadone in the hospital before.

I was just thinking with you being in the shape you are in, I think you need really good care to get better. It does depend on how good the hospital is also. It sounds like you have had your share of bad experiences in them too.

As far as the stimulator, we are going to turn it up tomorrow evening. I am scared. I have put it off now for over a month due to what it's doing to my voice and breathing. I can't yell at anyone because my voice keeps going down. LOL It goes down every time the machine goes off which is 30 seconds out of every minute. I still have to have it turned up 3 more times.

I lost my magnet that turns it off and Susan found it today. I swear I can't keep up with anything. I have wiped out the color on two tv's so far.

As far as the depression, so far it's not helping but the CFS and everything else has made the depression worse.

I got an appt. with the Immuneologist next Wed. I hope they can maybe find what's going on with me that makes my body shut down.

You have reason to be depressed and we all go through it so don't worry about how you sound, believe me I have sounded worse at times.

I hope that hospital bed is more comfortable then the ones in the hospital. That's another thing I can't stand in the hospitals. With the TOS I can't lay in one any length of time.

I'm glad you are out where you can talk to people and not be alone so much too, maybe that will help you with some of the depression.

Hang in there,
Ada

some days, WTF.
 

Oh Rosie. I'm very sorry but I must cross the atlantic and string your sister up by her ears and tose to a large oak limb Honestly ! I'm seeeeeeeeeething! I disagree with your assessment that she doesn't care. She obviously does care, care enough to be malevolent and manipulative. WOT a beeeotch. Really, she is being quite abusive.
Where is your Ben, the original Ben? If he knew how dreadfully you are being treated, I like to think he would spring on his chariot and ride to your rescue. I bet he would. He sounds very wonderful.
I am so glad you have your bed now. FInd some local electronics students and let them attach James BOndian gadgets so you can zap your evil sister when she does wretched things. The Hoist-Snatcher, the Bed Electri-Fryer, things of that Nature.
Myself? Pretty bad slide at moment, wracked by aggressive mood compulsions which may lead to getting tossed out of my job.;.... nothing new. Pain a medium-high level. A 3 hour massage and slow bake for 3 hours on a tropical beach with frozen margarita might help. Also helpful would be a car that functioned, finding my eyeglasses that my bad doggie hid somewhere, having my stupid bodd get hit by a bus, having my friend be cured of RSD now that dystonia is suddenly moved into her jaw, etc etc blah blah blah pass the chocolate please!
I did storm into my therapists appointment this morning, and demand that all my health care providers stop telling me I was merely bonkers, but they start doing a few actually TESTS and start to assess some of the BIOLOGY of my pain and fatigue and mental deterioration. I've been saying this quietly for oh, 15 years, but apparently not assertively enough. So now I am going to have a full battery of IQ tests and memory tests, etc. I'll probably have a lot of it done at an Alzheimers clinic! So i can learn even more about brain atrophy. Fun stuff to share.
send news of your mates. have you contacted them yet per my bossy insructions?!

Spoons
 

Hi Frogga,
Sorry, I haven't been on the board for awhile & I missed your post. I hope your situation is improving & you have someone other than your sister & her boyfriend to assist you. It's unfortunate that some family members can be so self-centered. I know because I have some but I'm fortunate in that I don't have to rely on them. Planning a trip sounds really nice. I've been thinking Hawaii for 6 months, even ordered checks that resembled Hawaii. No real plans but the thought makes me feel better. I hope & pray that your condition improves really soon.
Linmarie

Hi!

Linmarie - Hawaii makes everybody feel better, I'm green with envy..:icon_mrgreen:

Frogga - I know you're from a nursing family, but I have to say it, your sister sounds like the British Standard Nurse from Hell. I'm absolutely gobsmacked (good old brit word, lol) at her behaviour, I really am speechless. Sounds like Colditz on wheels. I would like to grab her and smack her into the middle of next week.

Better shut up now, before I have apoplexy :mf_argue: :Slip:
all the best :(

Frogga,
Your sister sounds horrible. Self centered and completely involved with only herself. Of course, you could "accidentally" spill some slippery stuff on the floor then ask her for something. If she should slip and hurt her butt...Oh well, maybe some pain is needed. Of course, I never recommend anything like this, but you know..loll. One can daydream. Just keep in mind that her being your sister is only a biological accident. You never got to fill out an application as to the type of sister you would like. You know the saying..what goes around comes around. Hope you mum gets home soon.
Mary

Frogga Sweetie
 

I am a veggie also, and if I know where to get take outs near where you lived I would call them and order you some decent food and charge it to my American Express, I am that mad at the way you have been abused!!:( Please know we care and I am sending you gentle hugs, If you pm me your address I'll send you some treats.:hug: Carose

Hey Frogga,

Now that *would* get the message across, if you started receiving Care Packages from the States, just like in the Second World War, lol!

Hope you mum's locked your sister up, on bread and water...
all the best :hug:

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

Ben?!
 

WOT! Ben? How and when did he pop up at home? Tell all! Give us some dish!

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 :winky:

I always have you in my thoughts and prayers.

Love ya sooo much

:hug:

So sorry for your pain frogga
 

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

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!

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? :)

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:hug:

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!!!!

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?

I will tell you that this all sounds just like Brooke... She falls off the toilet and out of the w/c.. YOU 2 really are goin through the same and I am praying for you also each day... I wish Brooke could get on the ketamine... She is two young to see Dr. Schwartman yet.. Nobody under 18... Its totally not far to anyone... God Bless you...
Betsy Ann

you know, girl, i think i'm feeling good enough to come over there and take care of you. i can stop and pick up molly on the way. hey - i used to be a travel agent! i can get us there for next to nuthin. and, i'll have you know, i am a wonderful cook (i just don't eat what i cook) and i will bring my guitar - if you can get a piano in there i can do music therapy with you.

i think i will write a song about all of you on here...

love you!
ang

WOOHOO!! house party at mine a go go then! Don't worry Rogue, I will make Molly, S and unrouley do the cleaning before you arrive so you can't pick up too many infections from any of the babies (2 dogs, 4 cats), but I have a spare hospital bed - though we may end up top to tailing! Molls, I'm sorry that you will have to let unrouley cook! I don't really eat properly since the RSD either.. (sending you a virtual bone to knaw on).

Allen, are you still up for it? Anyone else fancy a quick trip across here?

Mollsy - S was right about the maternal ballet dancing - she believes if we don't do it then my joints will fuse. She doesn't get they ARE fused and will not understand why they can't be bent back. Mum gets so frustrated she has been known to jump onto my legs to try and get them moving - I swear she took lessons from that nurse who created the heat treatment for polio (to reduce deformities through use of heat and strength by trying to break the spasm and then keep in the correct position).

And hey, if any of you need nursing care, I have mum AND Char and they are as bad as each other for dealing with RSD.

See you all soon!!

Love ya

Froggsy xxxxxxxxxxxxx

Mad Mums, RSD Bibliography, Perfection enemy of the good?
 

I'm speechless. This is a rare occurrence...
I am a former ballet dancer [as you might guess by my avatar] and I do solemnly swear that it is NOT supposed to involve Mad Mums pouncing up and down and twirling unbendable bits. [you're supposed to do that to yourself, for Love Of Art! Ergo, in ballet masochism is OK, but sadism is not.]
About the ketamine pump... I will look in my unwieldy article database to see if there's anything... Speaking of my database; do you think I should just post my outsized RSD bibliography in the Resources section of Neurotalk RSD and let folks read through it (with Abstracts)? I keep fiddling with the Biblio trying to make it perfectly searchable with Index, Table of Contents, etc... but maybe I should just post it as is? it's rather excessive: about 900 medical/ scientific articles. but maybe perfection is the enemy of the good and i should just get it all out there to you?

Ready to Rock and Roll!
 

I will bring the only musical instrument I know how to play, Am/Fm radio :)

/stakes out a prime real estate location on the floor :winky:

Okydoke Allen, you get the dog bed then :P It'll be lovely and warm and it's all padded up! Then you can get yourself some floor space!

At this rate we'll have a small band going!! just need to persuade IHH to bring the cello and we're sorted!!!

love ya hun and hope things are going well for you!!

Froggsy xxxxxxxxx

Can I come to the party, my dear?! :D

Start doing better... I am so disappointed for you about the pump... I wish you could have gotten it. But hoping and praying the nortriptyline will help you... the ami helps me a little some nights.

Love ya!! :hug: :hug: :hug: :hug:

hang on IHH - they said he couldn't do it but he is referring me to another dr that does do them... I'm sure that's what I said but I am so tired at the moment it could be rubbish! will run and check in 2 seconds!!

How are you doing my darling?

Of course you can come... that would be awesome!!!

Love ya sweetie! xxxxxxxxx

Oh!! My mistake!, sorry about that- I am in a brain fog... Glad it MIGHT be a choice!

Not doing too well... just emailed you though! ;)

Cool!! Really would be awesome! :D :D :p :p

Musician ready for band!
 

Hi frogga,

I just love a good party, and I play a pretty mean saxophone to boot! Please count me in... :D

EJ