The (not so old) Crocks Cafe -Part 2

formaldehyde_perfume

Trialia wrote: »

*hugs Sue*

I'm actually finding out just how lucky I am with my current GP - she's brilliant. I had an exam with the nurse yesterday, and she told me that my GP had talked to her about how she's not to move my limbs herself, she should tell me what she needs me to do and let me move myself so I don't dislocate, and she told her all about EDS and the nurse did some more thorough research on the subject. I really, really love this one, have I mentioned that? Finally I have a doctor I can trust!

That's great.

Funnily enough the really good GP I've talked about got me really upset on tuesday. The short story is that she wouldn't refer me to wheelchair services for an electric wheelchair and she wouldn't issue my medication so the pharmacist can make up my docky boxes (which both me and my mum struggle with doing at the moment) and she reckons I'm not on "that much" medication *sigh* I knew she wasnt in a good mood when I went in, but I was also feeling low and drained so what would have annoyed me actually made me cry and upset me for the rest of the day.

On the plus side I saw the nurse the other day and she has refered me to a weight loss program, the application form doesn't seem to allow for disabled people but it's free so all it will cost me is my time.

I also saw the dermatologist who has refered me to camoflage makeup for my acanthosis nigricans because it really bothers me, I don't really get any symptoms (except maybe extra spots or blocked pores) but it's really hidious to look at and makes me feel dirty because it looks dirty. Camoflage makeup is waterproof and means I can wear my hair up and start wearing clothes where my neck and chest are more exposed, rather than trying to hide it with a shirt collar etc


I have my aunt and her friend coming round tonight, we're having an indian take away and a good catch up. My dog is going over to my dads as the family friend is petrified of dogs and last time we shut him away he barked all night and I just couldnt think so it was stressful. This time should be much more relaxing

Careful_with_that_Axe

LW sorry to hear you have so much pain in your knee. Hope you can find some relief.

Trialia It's almost like winning the lottery when we find someone who understands isn't it.
I'vebjust organised 2 hrs help in the house and had wondered about a blitz team of 3 at first, but the woman who came to assess me just "got" me straight away and realised that I just couldn't cope with 3 busy people around me and the ensuing noise. I also have an OT and Physio who understand the slow, slow, stop stop, slow approach and ensure I don't push too far.

FP good on you - you are being proactive. I totally understand what you mean about how you feel about the wotsits (can't spell today). My Lupus Butterfly rash REALLY bothered me, on top of the constantly breaking out into gushing sweats. Made me feel like a sweaty, red-faced fat stereotype. I had laser treatment on it and was thrilled with the results. I know in time it will come back, but it has helped me enormously psychologically.
I did enquire about a referral for the camoflage make up but I can't have worn any make up for almost 5 years now and, in truth, cba to slap it about now.

Just received ESA questionnaire in the post this morning but luckily, it came at the same time as some stuff I had ordere off Ebay, so I had a YAY as well as a Boo Hiss.

Just earthed up some tatoes in bags, fed and watered my toms and planted up Osteospurnum and last of my geraniums. Back hurts like a begger, but I feel better for having done it.

I love this poem about red geraniums and will go for no other colour:

RED GERANIUMS
Martha Haskell Clark

Life did not bring me silken gowns,
Nor jewels for my hair,
Nor signs of gabled foreign towns
In distant countries fair,
But I can glimpse, beyond my pane,
a green and friendly hill,
And red geraniums aflame
upon my windowsill.

The brambled cares of everyday,

The tiny, hundrum things,
May bind my feet when they would stray,
But still my heart has wings.
While red geraniums are bloomed
against my window glass
And low above my green-sweet hill
the gypsy wind-clouds pass.

And if my dreamings ne'er come true,

The brightest and the best

But leave me lone my journey through,
I'll set my heart at rest,
And thank God for home-sweet things,
a green and friendly hill,
And red geraniums aflame
upon my window sill.

SingleSue

I found a gem of a doctor last year at my surgery, lovely lady and very understanding but unfortunately she left early this year. My actual GP is err, how can I put this.....abrupt? Doesn't listen? Oh I don't know, but I will not see him after he pronounced middle son ok only for middle son to end up being rushed to hospital just hours later and having to stay for a week (cellulitis)

But, I think I may just have found another good doctor at the surgery...and the bonus is I knew him when he was a medical student and going out with a friend so he remembers how active, how flexible, how skinny etc I used to be and it is not just something I am saying as I used to out kick (can can) and outdance him at the disco we all went to!

bigzippy

formaldehyde_perfume wrote: »

I also tested out some indoor outdoor wheelchairs with midwheel control which were great because now I reckon with any property I move in to I can use it inside and out

Do you have any further details about this (kind of) chair FP? I want a comfortable inside&outside, fairly light, self propel (but I don't self propel, just like to feel like I could have that control ) for no more than £200...frankly I just don't know where to start.:huh: I know that the local(ish) shopping centre have wheelchairs I like for inside but what they'd be like on outside stony paths I dread to think...! :shocked:

Glad you had a good time in Belgium LW. I need to go back there some day soon, we used to spend nearly all our school holidays there or Holland...ah, the memories :happyhear

Also glad you found a GP that gets it Tria, and an OT that gets it CWTA

My news, for any interested :
I get to keep my gallbladder, have dropped 4BMI points in weight, and am waiting on cystoscopy results about my bladder... I've now withdrawn from my DLA appeal after talking it all through with DH and receiving some advice from my CAB lady. Long story, but I'm at peace with the decision and feel it's a case of losing the battle to win the war. As a result though I'll need to apply for a BB without the backup of HRM, so we'll see how that goes (but, I've never had one yet and managed, so if it doesn't happen it's not the end of the world I guess ) and get myself a wheelchair out of my own pocket (when I finally work out what to get!!:think:). And I lobbed even more hair off (well, the hairdresser did ) today, and it's now shorter than I've had it since I was a schoolgirl! :shocked: Not sure how long it'll stay this length, as my neck's starting to feel cold! :rotfl: But it'd take a while to grow out anyway, so there's time to get used to it

Can't think of anything else, but I hope you're all doing as well as can be expected

formaldehyde_perfume

bigzippy wrote: »

Do you have any further details about this (kind of) chair FP? I want a comfortable inside&outside, fairly light, self propel (but I don't self propel, just like to feel like I could have that control ) for no more than £200...frankly I just don't know where to start.:huh: I know that the local(ish) shopping centre have wheelchairs I like for inside but what they'd be like on outside stony paths I dread to think...! :shocked:

Sorry, can't help you there, these were electric wheelchairs and you're probably talking about £3,400-£5,600 for the ones I was looking at. They have big wheels in the middle of the chair and then one set either side of those for stability, because of that (and I don't know the techincal know-how, so don't ask :P ) if you are skilled enough with the joystick you can move round on your axis so effectively only need the space you occupy to be able to turn, not the 53 point turn I have to do like on my mobility scooter. I thought I wouldnt be able to have an electric wheelchair because I'm hoping to move and the property sizes are tiny so wouldn't be able to use it indoors, but these midwheel chairs seem to be the answer .

Now it seems I just have to battle my GP as I've already spoken to wheelchair services and they said I would be considered for an electric wheelchair for indoor use, then I'd have to undergo a sort of driving test (which, apparently, 1/3 of people fail) to be allowed to use it outdoors... But my GP wants me to work on keeping me mobile (which, in theory is great) , she doesn't understand that without my independance my mental health will suffer so I just won't be mobile as I'll be in bed with the curtains shut for days or weeks at a time, which is what I did for most of my teenage years.

FYI, my evening went well last night. The only downside was my health. Who knew that sitting at a table for 2 hours would leave me so exhausted and in so much pain (and there's the ATOS doctor saying I'd have no problems with an office job, ha!) that I went to bed early and am still not really capable of doing anything today, despite having a 'full' nights sleep.

LameWolf

formaldehyde_perfume wrote: »

FYI, my evening went well last night. The only downside was my health. Who knew that sitting at a table for 2 hours would leave me so exhausted and in so much pain (and there's the ATOS doctor saying I'd have no problems with an office job, ha!) that I went to bed early and am still not really capable of doing anything today, despite having a 'full' nights sleep.

Yes, it can be exhausting; you were having an Indian take-away, weren't you? I find eating a meal to be one of the most exhausting tasks there is! Keeping your mind focussed on the conversation can be very tiring, too. I tend to "zone out" after about 5 minutes, and leave Mr LW to do all the talking, but shhhh.... don't tell on me.;)

I feel like I've gone through the wringer - just done my online tax return!:eek::rotfl:

*waves* to BZ I assume it's good news that you get to keep your gall bladder. And well done on the weight front.:)

bigzippy

LameWolf wrote: »

*waves* to BZ I assume it's good news that you get to keep your gall bladder. And well done on the weight front.:)

:wave: LW
Yeah it's good that I don't need surgery and the symptoms that caused the worry seem to have been gradually subsiding, so I'm not sure what caused it but it seems to be bogging off Thanks

needing-help

Just popping in to say hi to everyone and hope things are ok for you all.

I have been in court for the last 3 days and as a result am totally exhausted and stressed:( Think I used a whole week of spoons just walking through the door on Wednesday.

Take care xx

LadyMorticia

Evening everyone.:wave: Hope everyone is as well as possible.:)

I'm getting a wheelchair this weekend. Someone from here has very kindly offered it to me and someone is going to drop it off this weekend. Is it wrong to be excited?

needing-help

Hi everyone I'm feeling calmer today:D

I just want to say a huge thank you to Trialia. I took my daughter to physio today and the physiotherapist was not impressed by what the consultant had said in his referal letter. He basically said her joints were a bit clicky and mum is worried!!

She said DD was very very hypermobile and should have been refered sooner. Another physio walked in while we were there and just looked at DD who was standing still and said "you got a really hypermobile one there!"

She is sending her to get some insoles made for her shoes as she said the lack of muscle tone is causing her ankles to bend inwards.
She also commented on her back and how far it bent in when she sat straight, I feel so bad I didn't notice it:(

We have a load of exercises to do and she will see her regularly. I really didn't want this for her but I'm relieved someone is taking me seriously at last. It's going to cost me a fortune though, she has to have a new car seat, special pencils, a certain kind of shoe etc!!

Don't care though as long as it all helps.

Sorry for the long winded post but THANK YOU and thanks to the rest of you who gave support/advice.

xx