inflammatory connective tissue disorder

i still wish i was horse .they could put me out of my misery then 

NO NO NO tiswas.. It's very seasonal...in a few months you will look back on on this horrid..seemingly endless time, and wonder how on earth you ever got through it..and you will....but you will have sooo much experience to share and help others with...there is light at the end of this long long tunnel..I can personally testify to that....really feeling for you right now.....gentle soft hugs from over the seas...please remember tiswas you are a living book full of help and advise for other sufferers... Have a lovely day...be blessed..:-) xxx. Chin up...it can't last forever....xx glad you not a horse..lol

ahhh thanks hun 

what makes me laugh is the doctor shows you the computer  screen of your results and expects you to know what they mean .

you have to ask the questions and you dont always have the right words at ahand if you have a brain fog day . like every other day .

my fsh leval was marked as ok ,but my doctor said she thought it was a bit high , along with the very high almost of the chart inflamotary marker .

iv looked into fsh and its linked to hormones and can rise in the menopause causing problems . more blood tests tomorrow lets hope they show something that can be dealt with .hugs back 

Hope it's a really good report for your next blood tests..be blessed have a good day..:-) xxx

had a better nurse today 

so not much pain from the tight arm  band 

having tests done for r/a vit d  and some others that i didnt understand because they were just intials .

so go back to gp on the 1st may 

i feel pretty much the same hun 

i put everything down to fibro as like  you say thats what they seem to do 

any way just , its just that iv been feeling a lot worse than normal and i wanted to make sure nothing esel was going on .

i dont want to be like a lot of people spending my life in one waitng room or another

. i no the doctors hav'nt got the answer .

and if they dont start looking for the trouble in the right place they never will, its in the amgdala gland in the prehistoric part of the brain 

thats were it needs to be sorted .

i know hun its a bloody nightmare

How horrid...it's just sooo incomprehensible what we have to go through at the hands of the professionals ..we really need a worldwide spokesperson...someone famous..mmm ...maybe then we will get this Fibro more recognised...it's just awful when something happens like that with our health and because we have Fibro..it's just dismissed as that..and they say stress and worry make you worse...love that one...look at the half full glass Barbara and don't let this Fibro beat you..your worth far much more than that..have a lovely day..be blessed:-) xxx 

i am hoping to move to a bigger town this year 

and i shall be placing cards in shop windows 

asking if there are any fellow suffers that would like to get to gether 

for things that normal people do .

like coffee mornings lunch and an evenings out 

with out people tutting etc because your on the fidget or because you cant take alchol . like for like i think is whats needed 

when we have something like this only others like us can understand . 

i am sure i will get a good group of people together and together we will feel normal .

Hi Tis, That's an excellent idea. I live in Shropshire and there is nothing around here for Fibro sufferers either. I would not be able to start up anything as I am not very good at mixing with lots of people, just ok on a one to one.

maybe you could put something up like

fellow sufferer required 

to meet up  .and go for coffee etc 

put in your age and condition .

see what happens 

we all need friends and with our condition we need special friends who know how we suffer because they suffer the same .

worth a try .

 

Gooooo tiswas, you sound sooooo positive, that's an excellent idea...we have a Lupus Association that includes all Auitoimmnue conditions..lotsof people with Fibro...but all their activities are on Sunday..Oh well I get lots of positive support anyway...I get their newsletter...very informative they are too..they get specialists come and talk to them etc...then they put their speach in the newsletter..etc...they always put uodated research in too..it's really very good..well done you...hope you get moving really soon..have a great weekend..it's Friday 11.45am here..lovely days we've had too, it's been raining this morning..but it's not cold..be blessed..:-) xx

well its good that you have some type of group 

but its organised one .run by an authoriy by the sounds of it 

i want basicly to make a friendship  group of suffers 

so we can be just casual swop mobile nos 

so we can text someone in the group 

to say i am having a bad day could you make a coffee

or if someone is to  ill  we can call round with a coffee 

and help maybe in some small way with a chat and alaugh

or maybe with something practical 

i find the groups that are organized really dont get to the reall point of issue .  someof us cant work ,and have no friends or have given up work and lost friends its hard to make new ones because none suffers just dont understand . 

i wouldnt take fees or anything like that it would just be a group of fellow suffers meeting up and doing normal things when we can and if someone isent well enough then they dont feel under pressure to turn up

and someone could look into see if theres anything we can do 

just a friendly face ,when your in abad way can make all the differance  

lets hope i get my chance to give it ago .because the idea  just came to me before sleep the other night . sometimes i think spirit show us things that can help us cope by helping others ,NO i am not a cooke or a nutter ,but i feel sometimes when we are lost in pain we cant think straight ,and we ask god or the angels for help ,they show us things .

i believe in spirit the ones that have left us are never far from us .

they keep us safe , and show us the way . 

but i except that others have differant believes and that to is fine .

That's exactly what this group started as too, a couple of sufferers who decided to have a cuppa, chat, go out etc, now it has state wide little groups of men and women doing the same thing......there is no charge either, just raffle tickets once a year so they can cover the newsletter costs...they just grew and they have little get togethers over lunch every month and they all get together state level at some hotel etc once a year...so this is how it could end..they got recognition too. That's why they get such support from the different autoimmune foundations, researchers and specialist doctors who speak ect...tiswas...from little things big things grow..go girl....this one has been going about 30 years now...:-) xx

well lets hope it comes to fuintion got to wait till move 

no good starting here to small.

i am just tired of having no friends 

and missing out on simple things that friends do 

you no what its like sitting in a pub /bar with folk all having a few drinks 

and all you can manage is a fizzy water with a slice of lemon you dont fit in you fill left out , and you get sick of people trying to push alchol on you and making excuses , so i dont go when family  come up 

i stay home . its just to much hassel . 

if your with a bunch that suffer the same you get exceptence 

that makes a differance i now some people can drink with fibro /me etc 

but they still understand if  you cant , 

I don't drink either.....tooo bad if people don't accept that..I accept anyone else who drinks..hope when you move you'll get heaps of new friends tiswas, what your planning on doing is fabulous, that's just what we all need to do, be proactive...well done you..have a great day...mu husban has just arrived home...he has been in Melbourne for the day with friends that he was in the army with in South East Asia some 40 odd years ago..it's ANZAC Day today, he flies over there every year...bit special it's the 100th anniversary this year...great friends they are..only catch up once a year for over 40 years now..their all just the same but a little greyer..lol..I've had a really lazy day watching movies and cooking...it's 10pm now and I'm just off to bed..night night..be blessed.,:-) xx

thanks hun .

but you know  what i mean ,they make you feel an outsider and your already an outsider so it dosent help .

glad your husband had a great time meeting up with old friends 

Yeah tiswas, I know exactly what you mean ...but I just don't let them or their comments rule me anymore..their problem not mine..only thing is they often don't think their got a problem..lol..:-) xx

thats true theres more people with a drink problem then they think.

it would just be nice to be able to have one or two social drinks 

now and again. . i dont mind drinking water its others that make a thing out of it which then in returns makes me feel even more of a freak 

.

Hi Tis, you ok? You're not a freak! I drink loads of fizzy water, I like it with blackcurrant added to it. I will have a drink at home, but never drink socialy as I don't have anyone to go out with either. 

i know the feeling its dead lonely suffering with this 

fibro, not only do you have to suffer the pain and fatigue and other symptoms , you have to suffer the indifferance of others