Re: To Barbara
From: Sally (anonymous@obgyn.net)
Mon, 28 Jan 2002 18:32:08 -0600 (CST)
Hi Barbara,
hang in there and keep doing what you are - sounds like you are doing
everything you should. Sounds like your current MD is good and at least
they are monitoring everything - so if something major goes wrong or
worse they should detect it. Try to be as positive as possible - fear
is a huge cause of stress and that can make everything worse. My father
has a very rare type of cancer that the drs don't know what to do with
him (he is only 58) .....or what the outcome or future will be (it was a
rare type of skin cancer that despite surgery spread into the facial
nerves. He then had radiation treatment (and has significant scaring
from that) but now symptoms have recurred. They think they can see
'something' close to his optic nerve but not sure so they are just
monitoring wirh MRI every 3 months. Dad says he just thinks of himself
as a medical experiment and hopes that what they learn from him may be
useful for others. Of course if the cancer spreads to his brain that is
it! He is an extremely intelligent man.... but this is something he
cannot control. So for him for now it is wait and watch and see. He is
a huge inspiration to me as he is so positive. He is also fortunate
that he takes great strength from his beleif in god and he places that
in God's hands and continues to get on with his life.
I wish I had the faith that he does - but I don't. I hope it could grow
in me over time..... though I don't know how.... If you are fortunate
to have faith in god or to be able to find it, this may give you
strength. So don't neglect this part of your life.
One thing I could recommend that might be helpful (over the long term)
is a chinese practice called qi gong. Look it up - you could probably
find a qi gong association somewhere close to you. It is like Tai Chi
but goes even further. It is something that one has to practice over a
long period before one sees results but the results are really
noticeable (ha - I can talk - I haven't been practicing recently!). Have
you tried chinese medicine (like acupuncture, herbal treatments, qi gong
(this is also a healing technique as well as a meditation/energy control
thing). It is not the be all and end all, and you need to find a really
good dr but it can do wonders for chronic conditions and it works on
strengthening the immune system - which can only be good.
Best wishes,
--
Sally
At Mon, 28 Jan 2002, Barbra wrote:
>
>At Mon, 28 Jan 2002, Sally wrote:
>>
>>Dear Barbara,
>>
>>It must be frustrating knowing that there is something wrong but it not
>>being clear enought (to some of your doctors at least) for them to take
>>you seriously. However, at least your MD is good.
>>
>>However, while I think your endo sounds horrible, I do agree with her
>>that it is easy to get obsessed with our health. I am also totally
>>obsessed - why else spend hours on the internet searching..... and then
>>to try to self diagnose and then panic. FOr example - I was tested as
>>having low calcium. The endo then tested for a hormone called PTH
>>(parathyroid hormone) and mine was very high. So as soon as I got the
>>results and before I saw the endo I looked it up on the internet... all
>>i could find that explained such a finding was kidney failure... I sure
>>was worried. Anyway, I found a site and posted a question, including
>>creatinine and other stuff I had had previously as part of a general
>>checkup. I got answered by a very nice italian doctor who told me that
>>while high PTH can be due to kidney failure (most usually) it can also
>>be due to a problem with vitamin D synthesis/ receptors.....and this is
>>often familial. He said I definitely did not have kidney problem based
>>on the other test results. I can't tell you how releived I was! (Though
>>I will feel even better if my next screening shows that all the kidney
>>function parameters are unchanged - I still have that niggardly little
>>voice in the back of my mind saying what if - but I REFUSE to listen to
>>it for now). Not saying that your symptoms are all like this - but
>>sometimes there are simpler expanations....
>>
>>However, I also have the internet to thank for giving me the impetus to
>>find a good doctor and find it wasn't all in my head and I wasn't crazy
>>and to start getting treatment and feeling better. Though the last few
>>days I have been pretty rotten - guess we all have times like that and
>>it will pass.
>>
>>The oedema (I also get swollen ankles - varies from time to time -
>>somewhat better at the moment) can also be due to familial traits. I
>>have a sister in law who gets badly swollen legs and ankles. It is a
>>genetic trait in her family - due to a venous defect - many of the women
>>have it..... I think what you need to worry more is if it doesn't go
>>down over night or when you elevate your legs. If you are predisposed
>>to oedema you need to be aware about standing for long periods, using
>>pressure stockings if you are in situation that swelling will increase,
>>be religious about exercising as much as you can (I know this can be
>>difficult for you with your other conditions). You could look up oedema
>>control on the net. While it may be a sign of heart or kidney disease,
>>it may not necessarily be.......
>>
>I wear those hose...cost a fortune...are uncomfortable as anything,,but
>do make my legs feel better!I don't stand for long times..I just can't>
>
>Hi Sally,and thanks for the advice and for reading my post,as they tend
>to even
>aggravate me after reading them....I go on and on like a duracelle
>battery.....just wish that my body would!
>My ankle edema does not get better when legs elevated....just the pain
>is not as bad.Upon wakening....they are still pitting somewhat.
>My doctor never mentioned the word"oedema" to me,rather just despondent
>edema.
>I will go and read more.......whah,whah,whah!Getting tired of this
>researching.....before I became ill..I thought there was basically only
>two diseases in this world,,,one being cancer,,the other being a heart
>attack....and the rest all being ;NOTHING!If ony I knew then what I know
>now.
>I never ever read upon health things in my life,prior to becoming ill.
>I did exercise and eat healthy and I considered my lifestyle to be
>normal...no smoking,alcohol,no drugs,etc.Good,clean,well
>balanced,adjusted life.
>The only thing I was informed about was to eat a healthy-low fat diet
>and exercise,which I did and to try and avoid stress..oh,so hard at
>times,but we all have stress,otherwise we would all tend to just stay in
>bed all day.
>
>>OK my advice - for what it is worth - you still need to get on with your
>>life the best you can. You do have one good dr who works with you. Now
>>worst case - if you have something like secondary heart disease what
>>would the treatment/managemetn approach be. In most cases it is dietary
>>and lifestyle. Usually they wouldn't use drugs unless it was very
>>clear..... so even without a 'diagnosis' what can you do for now?
>>
>I guess I have to play the waiting game for now,till I find someone that
>is willing to take on as complicated a case as mine is.With the lupus
>and all,,,as if that isn't life threatening.
>Thanks for pointing out the no drug approach....as that is currently
>what I am on...ugggg!
>
>>Many of these syndrome x and other lifestyle disease things are that -
>>LIFESTYLE DISEASE - so you need to live your life in a way to minimise
>>the risks and complications - even more so when you know you have
>>genetic predisposition...
>>
>I do suppose I have a genetic predisposition to this...you are
>correct...but I didn't fall into the category of a bad lifestyle at
>all......my mom is heavy because she eats alot,,all day.
>>You need to have general checkup annual and at that time they should do
>>a full works blood testing which will detect kidney, cardiac, liver etc.
>>function and monitor them over time. That way, if things are getting
>>worse the will be detected. If there are no major detectable
>>abnormalities - at least whatever it is is not going to kill you
>>immediately - or probably in the near future.
>>
>I have more than annual check-upsss.I am called into my MD for repeated
>bloodwork all the time.They do liver and kidney function tests every
>three months..I have an ekg done every six months,,a 24 hour holter done
>every time I complain about my heart slowing and me falling
>down..called"bradycarida",,no explanation for that.I have peed in a
>moonshine jug...for twenty-four hours at least four times this last
>year>I know....I am the puzzle!
>>We only have one life we need to try to live it the best we can.
>>
>Sally.....I am trying so hard to live each day the best that I can.I
>nearly kill myself trying to exercise daily,just to keep the strenght in
>my legs and to relieve the overwhelming fear of what tomorrow will throw
>my way,as I vary from one minute to the next.
>I am not whining....I am just so frustrated and wanting to be normal
>again,or at least be on something to control my problems.
>
>I thank you so much for your advice and those last words really hit a
>home runner with me!I guess I better make the lemonaid out of the lemons
>for now!
>Wishing you health and success with your journey to wellness!
>((((HUGS))))
>>Best wishes to you barbara.
>>
>>--
>>Sally (31 - Australian in the Philippines)
>>
>--
>Sincerely,
>Barbra Camara
>
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