Re: for Elaine

November 1, 2004

Hi Elaine

Wow are you living my life or what.....I have endometriosis and fibromyalgia...had cameras everywhere...recently had heart tests for chest pains and told I am fine...take pain killers they say or go for a swim...yeah me in a swimsuit...I dont think so...you could have reflux they say...here take a tablet for that....talk to a psychologist....its got to be in your head...blah blah blah...sometimes I think we should hit the drs over the head....hugs Lee

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November 2, 2004

Hi Lee. I too have a heap of problems, and often vever know where to turn.

I have acute and chromnic asthma, a spinal tumor( inoperable),I have fibromyalgia, and Rhumatoid arthritis, which not only affects my joints but is affecting my kidneys, liver and seems most internal organs, I have a neuro stimulator impanted to assist with pain, live tot ally on pain relief, also high blood pressure, which is almost under control with medication, I also have choleserol at 8.9, yet cannot contain it with diet, and am allergic to most medications.

I have died 3 times, and the last time I died, I was unconscious a little too long and now suffer short term memory loss( quite badly) and each day seem to becoming allergic to not only more medications.but foods too now.

I have been really believing I have bronchiectises since my mother told me my dad had it all his life.( he died from multiple strokes, never knew he had breathing problems, however since I was around 21 when I first got asthma my mum kept saying ask the doctors about bronchiectises, they all just brushed it off and said that it was never really a medical term and that the oldies called chests problems all these names.

That was almost 40 years ago, I am 59. and have 4 grown kids and 12 grandkids, many of whom are bronchial asthmatics, and I keep reminding them to keep in mind bronchiectises.

I actually have written a small booklet on our past families medical conditions and what they experienced, so my family can have some kind of background knowledge to hand doctors, because they don,t seem to listen until it is far too late.

I find I have to concerntrate hard on positive things each day, almost tricking myself, to be able to rid the pain and be able to get out of bed.

Once up, I,m usually able to manage very well with pain meds .I run a psychosocial rehab support group, and keep studying and working with people with mental illness and disabilities to really keep myself busy to stay alive and not give in to all my health probs and pain.

That truly is the only pain management that works.

I also do keep as well ( sounds silly) as I can by avoiding smoke, dust, strong smells, especially gardens, lawns etc, but all those things that agrevate my asthma, unfortunately lots of things are catch 22, as most things good for my getting air, breath, cause so much more pain and arthritis.

We all must keep learning more strategies , and that means there is always something new to try or learn, keeping in touch with groups like this, helps us identify lots of things and gives each of us ideas, and a sense of belonging, even if we don,t think that is what we need because we may appear to be doing fine, and handling things, but most of us put on brave faces to those we love, even though we have been honest and they do know our needs, they really don,t because we consciously try to appear to be happy to not let them worry too much.

Any way I just feel I get a lot from this and other support groups.

Keep in touch, I hope we can all be supportive of each other, good luck every one,

Sandy, from Australia, sunny Queensland( very humid 3 months of the year)

Re: for Elaine

Hi Elaine

Wow are you living my life or what.....I have endometriosis and fibromyalgia...had cameras everywhere...recently had heart tests for chest pains and told I am fine...take pain killers they say or go for a swim...yeah me in a swimsuit...I dont think so...you could have reflux they say...here take a tablet for that....talk to a psychologist....its got to be in your head...blah blah blah...sometimes I think we should hit the drs over the head....hugs Lee

Find local movie times and trailers on Yahoo! Movies.

November 2, 2004

Hiya Sandy

wow you cope with a lot too, good on you for kicking on with life, often its working out what youcan and can't do and then focus on the can do's mostly, because the more you are able to do of the 'can dos' infact you seem to gain some ability back.

in the fibro support books, it does say, don't get worked up if the house hasn't been Vacuumed for 2 days or something else of the housework hasn't been done, if you just spend your waking able time doing housework, you will resent everyone else in the household, resent your own life, your self eesteem will take a plunge, as you confidence in all things and you end up worse off, when you find the harder you are pushing to do a job that makes you ill ( this can go for all other chronic illnesses too, ie if you have bronch or asthma and doing the dusting leaves you choking up and or wheezy) your just hurting yourself and making yourself worse off and in turn the old catch 22.

So making sure you spend some or even all of a day doing something you really enjoy, or do something positive. not easy i will agree there. But after the stages of denile, depression and anger at 'why me?' you get the accpetance, then you can as you have done run a support group basically, if you know your limits and make sure others around you know your limits, ie if you work with an able bodied person that hasn't any or very little, they they can't expect you to be racing around like a blue bottomed fly (putting it mildly) when they are more capable them you. You have put into words for your family, history of the families health conditions in pass generations, what a wonderful idea,

all positive steps to helping yourself, after all people often measure themselves on how much they are able to do, if they can't do much as was before they feel worthless and useless and not a valuble member of the family even society. but we can always find something we are good at, dispite the things we now 'can't' do, its finding them and knowing that you do have something and if you don't find it right away, don't stop looking for it.

I myself have taken up learning about not only my own conditions, but my hubbies, so I can make sure he is getting treated right, doing possitive steps towards helping, thats why I joined this group, to learn more from the 'horses mouth' so to speak from the very people with bronch that cope and have to put up with some horrible syptoms that occur daily with having the condition, as well as learning to cope with mine too and i have joined the local support group for my fibro, on the committee, look after the library we have gathered for memebers to borrow and also promote awareness for the condition. then I have joined the PPIF (patient and public involvement forums) i have joined the team that deals with checking up that the primary care (GP's, Chemists, Dentist and opticians) are providing at least the govenments minimum needs for the public, at present we are sorting out a work plan, them to go around to check for access to these places, for all manner of

abilities and disabilities, form blnd, deaf, disabled all ages, not just chair bound.

They are both great groups of people, all supportive and when I got the PPIF forum meetings or anything they will make sure I cause of my problems with walking too much, and getting even more extreme pain than my daily levels and then night cramps.

But I have to take info to my GP or other dr's I see, as many of them do not know what fibro is and likewise i'm sure that many of the Dr's out their don't know and even don't want to know what Bronch is either.

Keep up the good work Sandy, I'm sure your family really appriciate the info and one day it might help one of your children or grandkids, even intime great grand kids get a dx much quicker and suitable treaments much earlier in the beginnings of a condition, so end up maybe less affected later in life, than if it was left to the dr's guess work and blood tests and that that turn out less conclusive for one thing or another.

take care

Elaine

taylor wrote: