The (not so old) Crocks Cafe -Part 2

SingleSue

Jojo, your story sounds very much like my story with eldest...for years we were palmed off, I was seen as a paranoid mother etc until one day, we managed to get to see a locum at the surgery.

Eldest was referred to the hospital as possible Marfans as he also has the crowded teeth, is lanky, struggles to gain weight, or even keep weight on, chest pains and fainting, he also has very stretchy skin and the typical marfonoid facial features. His arm span fitted the criteria and apart from the murmur, his heart appeared fine but they decided it was marginal for Marfans and went for EDS instead.

His heart has now developed problems and he now has to have beta blockers but I do believe the EDS diagnosis was actually the correct one as there is no scoliosis or chest deformity (apart from him being able to move his ribs about individually!)

Trialia

Sue - I have scoliosis and a chest deformity, and so do a lot of other people who have EDS rather than Marfan's. Just sayin'. There's a LOT of crossover, which is why the doctors have trouble figuring out which is which with tall people...

Careful_with_that_Axe

Well done LW! Those achievements mean the world don't they!

JoJo I'll probably pop that stuff in the post to you on Monday? I'll stick in a couple of balls of acrylic yarn which are the best to start off learning with - they don't split and there's no point in using expenny yarn when you are learning. If I can get decent packaging, I will put in a pair of straight needles. I have never used straights, but use interchangeable needles instead as I find them much easier to use with the hand problems I have. I would pack a pair of those too, but you really need someone to show you how to put them together and use them properly. If you don't get on with the straights - give me a yell and I'll send you a pair to try out with.

Why do docs refuse to believe mothers? It is absolutely beyond me. My Sister tried hard to tell Doc there was something wrong with her son and they had her down as a neurotic mother. Was no great surprise to us when he was discovered to be at the severe end of the Autistic spectrum.

My Easter visitors have gone home and I am relishing peace and quiet and sleeping in my own bed again! Very tired, sore and peopled out, but was lovely to have them here.

Hope the sun is shining on you all.

Jojo_the_Tightfisted

Until we get to see the geneticist, we're probably not going to get any further with knowing the situation for sure. In terms of prognosis, hypermobility is less scary, but having any diagnosis is better than having nothing, as then she can get the monitoring and care she needs prior to any emergencies or permanent damage.

Sigh.

And a letter from DLA has just dropped through the letterbox. They're writing to my GP for information. Ugh. That's all I need. Although it could have been worse - at least it isn't an ATOS appointment (yet).


ETA: Aww thank you, CWTA! You, LW and Trialia and Sue and Morticia are my favourite forum people!

juno

I got a nice letter from the DLA today :eek:

They've looked at my DLA renewal and awarded me for an indefinite period!

LameWolf

Jojo even if there's some doubt as to what label to put on your DD's problems, the fact that they've said there are problems, it's not just a hysterical Mama, that's a major step forward!:T

Auntie Axe I got Mr LW to drag my rather extensive crate of wool off the top of the wardrobe in the spare room at the weekend; if (and it's a big if) I can find a bit of GUAG, I may even try making something!:D

Juno well done on the DLA award.

Had some sad news yesterday - Cameron, one of my Westie guests, passed away last week.:( He was diabetic, and had only one eye, but he was a game little chap, and loved life.

His friend Candy will still be coming to stay with me in late May, though.:o

Forgotten what else I was going to say (brainfog today) so *waves* to everyone else.

formaldehyde_perfume

Yay for juno , i bet that's a bit weight off your mind!

I'm still trying to get over this cold/flu thing, it's just sitting on my chest and not moving. If it's this bad after the bank holiday I'll go to the GP about it as it will have been 2 weeks by then.

A lot of little things have happened this week, I can't really remember any as this cold is doing my head in. The best thing though is that a company is going to come and take the hand rail down on the stairs and put an easy-grip one on which together with my stick means i'll be a lot more steady going down the stairs and will have more confidence to walk 'normally' down rather than going down on my bum, which is what I'm doing now.

This weekend my mum is going away and all my back up options are not available if something goes wrong, but I should be ok because my new neighbours are good and i have a couple of friends in the area, i just haven't needed them before so it would be a bit odd.

This week my mum has been at home and has been very off-putting. I've got a list of things i need to do but none got done for various reasons.

I just went to Tesco with my mum for a few bits for a street party we're having tomorrow and it made up my mind that when I get my own place I'm going to do it all online, although I did get a lovely holey see through type knitted jumper in the sale which made the trip worth while, but I couldn't have done a proper shop.

mcculloch29

Blimey, this thread flew...
I had a toxic friend some years ago and I still feel sad about it as it was due to her mental health issues - she was a wonderful friend when she was well. But she also made me pay to have her locks replaced as her daughter (whom I childminded - legally) mislaid a key and she blamed me ... she got me out of bed to get cigarettes for her at 10.50 pm from the local shop ... she reported me for claiming benefits whilst working (perfectly legally if you childmind but I got thoroughly investigated, TG I kept immaculate accounts) .. It was all very stressful .

I love TP and DW. (Understatement!!)

I gave my grandaughter (nearly 10) A Hat Full of Sky today as her introduction to it. Her reading age is 14 and her comprehension age is 12 so she should be fine. I gave The Wee Free Men away a long time ago. Must buy another two copies...

mcculloch29

FP ... 'easy grip' hand - rails? I must google... Fingers crossed you will have a good time.
Juno I forgot to say BRILLIANT news.
LW, aww re wee Cameron the Westie. I love 'proper' names for dogs.

Crafts as therapy. When my marriage was breaking up nearly 20 years ago, I completed a large wool tapestry. I've often said it kept me sane, I could never part with it. I've not done anything as large since, just little things made with that mesh stuff.

Savvy_sewing

I have restarted my sewing, and that has helped me feel better within myself as well as keeping my arm more mobile, so you may have something there about crafts being a therapy.