The (not so old) Crocks Cafe

Indie_Kid

SingleSue wrote: »

why can't I produce normal children!

You wouldn't be the only one - I have inherited a rare genetic disease from mum. (they think it's her - her sister & I are the only one on either side of the family to have visual problems) My dad & brother also have genetic conditions too.

Eldest has taken it in his stride, at the moment he is only needed work from the physios of which he has many..he doesn't see it as a disability as he can partially dislocate various bits of his body to get into small spaces, reach things others can't etc. plus also gross people out by his incredibly stretchy skin!

My brother used to freak me out by doing this.

LameWolf

Jojo_the_Tightfisted wrote: »

LW, am I mistaken or have you turned into a whirling dervish of domesticity recently? I'm seriously impressed by that too!

LOL Thank you. Not really a whirling dervish, I don't think, but I am trying to diligently follow the Flylady lists, as I'm sick of half the house being covered in a thick layer of dust (MK is the Dust Bowl of the East Midlands imho LOL)

Tbh, Mr LW does a lot of the work; all the hoovering, all the ironing, and any jobs that crop up on the list that I'm not able to do safely.

But it does give me a reason to shift my butt - and it helps knowing that loads of other ladies are doing the exact same jobs, iyswim.

suep wrote: »

Hi all, Ive not been here for a few days as Ive had another bad flare. Im getting over it slowly now, although Im still very sleepy.
I have some good news at last. DS1 is in rehab and is doing really well so far. Once he's sober he will have a much better chance of getting access to his son, so hopefully things are on the turn at last.

All the recent stress won't have helped - I hope your flare subsides very quickly. Good news re DS1's rehab. If he can get himself sorted, that'll be a great start. I'll keep fingers crossed that he continues to make good progress.

SingleSue wrote: »

.why can't I produce normal children!

Makes me feel a bit of a failure to be honest, the whole body letting me down, crap genes sort of thing.

Awwww (((HUGS)))) Look at it like this.... What IS normal, anyway? And won't your lads have also inherited your incredibly nice nature? It takes a wee while to come to terms with the label once you have it - I was the same when I got my lupus diagnosis. Cut yourself a bit of slack, OK?

The_Dragon

Not posted for ages (and not really kept up either!) LW any chance you could come round here and clean as well - my place looks (or at least feels like!) a tip - I now have another thing to add to my medical history CFS (or it could be ME or fibro but it accounts for why I am shattered all the time!)

But just closing with hugs for all that need them

LameWolf

The_Dragon wrote: »

Not posted for ages (and not really kept up either!) LW any chance you could come round here and clean as well - my place looks (or at least feels like!) a tip - I now have another thing to add to my medical history CFS (or it could be ME or fibro but it accounts for why I am shattered all the time!)

But just closing with hugs for all that need them

Hi Dragon, hey it's lovely to see you posting.

I'll have to pass on cleaning your place I'm afraid - takes me all my time and energy to do ours!:o Even whirling dervishes run out of steam eventually!:rotfl:

I'm typing this with the netbook on my lap, sprawled on the sofa, while Mr LW does his WiiFit+ exercises, btw. And trying ever-so-hard to resist videoing him on my mobile phone.:D

Trialia

I've been at my dad's for the last week but SingleSue, hypermobility Ehlers-Danlos is exactly what I have, so if you've got any questions about the difference between that and HMS, you're welcome to PM me and ask away my dad has it, too. They're similar, but there are more secondary symptoms with HEDS.

(Note for suep - I have fibromyalgia in addition to HEDS, and yeah, the dislocations and subluxations can make FM flare like crazy.)

SingleSue

My questions? Everything!

I keep being asked what does it mean for the future but I don't have a scoobie...

Trialia

SingleSue wrote: »

My questions? Everything!

I keep being asked what does it mean for the future but I don't have a scoobie...

Well... More notably than anything, continued joint instability, chronic pain and a high chance of early-onset (say late 30s-early 40s) osteoporosis or similar. Skin is more fragile, joint damage and scars heal less easily than with HMS, and there's also a high frequency of immunity to local anaesthesia - particularly with dental treatment. I have most of that going on. Later on, it's good to keep an eye out in case of any heart problems because they sometimes come with EDS (my dad had three unexplained between age 35 and 50, though he survived all three and is still going pretty well).

Generally, though, GPs take HEDS a lot more seriously than they do HMS. People can have HMS without the associated chronic pain problems, though fibromyalgia's frequently a secondary condition that develops in either. I think that's why HMS is taken more lightly, since some people can have that and only have it be an advantage (pretty sure that's where the term 'benign' came from in the syndrome's full name).

SingleSue

Interesting about the local anaesthesia, they want to check middle son out for it too and a little while ago, he had to have a tooth taken out....4 injections later and still not numb!

Trialia

SingleSue wrote: »

Interesting about the local anaesthesia, they want to check middle son out for it too and a little while ago, he had to have a tooth taken out....4 injections later and still not numb!

Yep, I have that problem! They want to take four of my teeth out (thin enamel is also a complication), but they're going to have to do that under general. This article may help you, if you can print it out and give it to any dentist you have dealings with for your kids...

black_paw

sorry not posted long time ! waves to all ! poorly computer for months and now have this new one ! taken ages to try to read up on everything then to forget it all, so given up !