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Hear! Hear! Jake
When one is going to post to a BB or newsgroup, it always pays to listen
to what you are writing as if you are not the person writing it. When I
first read the post in question, the tone of voice came across as “well,
I’m not having any great problems with Grave’s Disease, so you people are
nothing but whiners! Just buck up and you’ll feel better!” To me, that’s
the same as telling a person who is deep in depression that all they got
to do is develop a positive mental attitude and their problems will disappear.
So the first thing that happened was the little bells going “troll alert”
started ringing in my head. I hang out on alt.support.big-folk and
soc.support.fat-acceptance which seems to be a big target of people who
troll. A lot of trolls post “well, I never have trouble losing weight
and staying skinny, so you people are just whiners and should buck up and
lose that fat!” This is not support.Support here in the Grave’s BB is about empathizing with your fellows
and helping each other with dealing with the problem of the disease,
regardless of how mild or severe the symptoms. It’s about knowing that
when your day is turning into hell from any number of problems, whether
they are caused by Grave’s or the world in general, there is a place where
you can go where there are people who understand what you are going thru.
‘Cause they have been going thru it in one degree or another. Healthy
discussion is good, deliberatly posting something in such a way that you
know people are going to react badly isn’t, because it is only going to
cause hurt all around.’nuff said on my part.
Jean CWOW – I hadn’t looked at the BB today as I wrote a couple of e-mails and my eyes were hurting too much to read it. When I read nocomment’s post I felt it was prompted by the mental illness issue (I definitely could be wrong tho). Anyway for my own information I reviewed the Clinical Features of Hyper/hypo thyroidism on the American Assoc. of Clinical Endocrinologists site.
Hyperthyroidism – possible signs & symptoms:
.nervousness and irritability.palpitations and tachycardia.heat intolerance and increased sweating.tremor.weight loss.alterations in appetite.frequent bowel movements.fatigue and muscle weakness.thyroid enlargement (depending on cause).pretibial myxedema (with Graves’ disease).exertional intolerance and dyspnea.menstrual disturbance (decreased flow).Mental Disturbances.sleep disturbances (including insomnia).changes in vision, photophobia, eye irritation, diplopia or exophthalmos.dependent lower extremity edema.sudden paralysis.impaired fertilityHypothyroidism
.fatigue.constipation.weight gain.memory and Mental impairment.dry skin and cold intolerance.decreased concentration.yellow skin.depression.coarseness or loss of hair.irregular or heavy menses and infertility.hoarseness.myalgias.goiter.hyperlipidemia.reflex delay, relaxation phase.bradycardia and hypothermia.ataxia.myxedema fluid infiltration of tissuesI feel with these lists of signs and symptoms (which seem to have all been covered on the BB at one time or another) there is good reason for complaints, discussion and most of all SUPPORT on this BB.
Keep smiling – SAS
While I read the BBS daily, I never have much to say. Today seems to
require a brief statement. The BBS has been my salvation. It’s the
first place to go when GD gets me down, and yes I have probably thought
GD caused a hang-nail, but that is because I have experienced so many
symptoms that GD seems like the first logical suspect to check out.
This is the safest place in the world for me, and it’s a relief to
know all of you are here fighting the same battles. My response to
no comment is a little differnt than most. As a card carrying member
of the ACLU I think it’s important to remember our constitutional
right to free speech. I can’t agree with him/her, but I didn’t let the
comment fire up my GD emotions. I think Steve’s response was just as
radical in the other direction, but that should be allowed as well.
The BBS is a refuge because so many people understand the effects of GD.
Not everyone has to be in agreement on the issues. Just sit back and
enjoy the diversity of membership.Proud to be a member of The American Civil Liberties Union
BarbOk Warriors!!!
Time to put on my facilitator hat and add my two cents. I have been in the
same boat once as nocomment in another BB (I did use my name and boy did I get
mail). The point of the matter as I see it is when we write something to a BB
it is not the same as talking to someone face to facw where they can see
your body language or tone of voice. YOu have to judge what they say only based
on their written word. I put a post on another BB similar to nocomments that
was ment as a light hearted statement as in Cheer up things could be worse! The
folks in the BB took great offense to it and I had mail for about a week after.
We all get along fine now and they know now I ment nothing derogitory by what
I said. Nocomment just mirriored what the 90% of folks who have GD and have no
problems feel toward those 10% of us who have problems. Thanks for the comments
no comment. I always like a lively debate!!! I take it as a chance to educate.Hope to talk to you all tonight on the chat.
Jake George (Achgook)
on-line facilitator.Patricia, your right there is no reason for me to use
the words i used on the the bb today.Yes i did excuse
myself from using this word earier on the bb,but no excuse
i do agree i have a foul mouth at times i hope to tone it down
in the future.I’ve been here since sept 96 and i concider these
people family and when i felt attacked i snapped.I also suffer
from other stuff than graves but im not going to get into that
I just wanted you to know that i’m sorry my words made you upset
your husband sounds like a real warrior i will be thinking of you both.To all it has been a very different day on the bb that took alot out of us all tomorrow is a new day,try to get some sleep.love , steve
What I find the most intriguing about Graves’ Disease is how unpredictable
it is and how it affects each of us so differently. When I was diagnosed
with GD I had no idea how serious it could get and didn’t have a clue about
all the symptoms of either the hyper or hypo sides. I wasn’t hooked up to
the Internet, didn’t have access to info except for a few paragraphs in my
home medical reference book, and the NGDF was just being born. We’ve come
a long way in just a few years!!To be honest, as I’ve read some of the posts in the last year I have thought
the same as Nocomment, “Let’s not blame every little ache and pain on GD.”
But, through the year I’ve also learned that some of those symptoms are
very real for some people. Just because I didn’t experience that problem
doesn’t make it trivial for another. I’ve learned a lot about GD in the
last year just from reading this board. My biggest lesson remains that
there is a lot MORE that needs to be learned and understood about this
disease. Just think what could be coming down the pike in years to come,
in terms of diagnosis and treatments.I take Nocomment’s comment as a warning for myself and others. Don’t let
GD consume your life! Yes, we need time to educate ourselves, take care of
ourselves, and support each other. But, we can’t let the world pass us
by because we were on the Internet, had our noses in a thyroid book, or
whatever. On those really good days, however few they are, we need to get
out and enjoy our family, friends, the weather, LIFE! I want my rocking-
chair memories to be about the vacations, my farm, etc. and not about my
GD and eye surgeries.Wishing you all health and happiness, Debby
P.S. I find “Nocomment” no more ambiguous than initials, first names, and
titles like Ms. Graves (sorry, don’t mean to single you out).I have not read any of the responses to your post, but feel inclined to answer any way. Don’t take your meds. Ever again. Then tell me this is not life threatening. When you can no longer get out of bed to use the bathroom, because you haven’t got the strength, tell me it’s not life threatening. And, I might add, the list goes on.
Pat
Dear “Nocomment,”
I and many others are happy that you have control over your Graves
Disease. That’s wonderful!! I, too, feel that I am much more in
control of myself and my disease, particularly when I look back
at the road I’ve traveled and how many miles I’ve come. Do I feel
tremendous every day? Absolutely not! Do I have more good than
bad days? Yes! I even remember when the reverse was true. So you
and I MUST encourage those less fortunate to post to this bb anytime
they wish without any fear. And we MUST sit quietly and listen,
offering words of support when we feel inspired to do so. There but
for the grace of God goes you and me. I can assure you that the people
who use this board will be the first to support us if the tables turn.Take good care of yourself. I wish you continued success.
Rosemary
I did not make the chat last night but read many of the posts tonight.I am one of those people who blame every “little” complaint on Graves. I feel I have good reason for this reaction. I was diagnosed in Sept. 94 during a routine physical. I felt wonderful and went for the physical because I do it every year after my boys go back to school.I had no symptoms and felt healthy.I was shocked when my doc told me what was going on and so was she.I had RAI in February 95. Prior to February 95 I had not been seen by a Physician other than the birth of my sons and my annual physical for 25 years, not because I didn’t take care of my body, but because I did. I was literally never ill.I am convinced that Graves disease seriously compromises the immune systems of some people. We all react in a different way to treatment. Luckily some of us do quite well, while others sadly have multiple physical and sometimes emotional problems after treatment. I look to this bb as a place where there are people who will understand. I do not blame my actions or emotional outbursts on Graves, just the continual physical illnesss. And yes I do come here to complain , but also to share and hope that the others out there like me will know that they are not alone.My actions and feelings are my responsibility not Graves. but my physical condition if I follow my doc’s directions and don’t get the expected results, are no longer in my control.When I feel physically really rotten I certainly do not want to sign on and read about how everyone is just great and has not a problem in the world. I want people who will share what they’re problems and solutions are so that maybe this will help me. I’m sorry this is long but I feel we should all feel comfortable coming here to “complain”
Everyone is entitled to their own point of view and opinion, however I was brought up to take personal responsibility for my for my feelings,actions and opinions not to hide behind annonimity.
All I can add is this. I have had graves for over two years now.
For the first time since then, my levels (through meds) are at
the high end of the normal range. (I had some complications
because I was pregnant when first diagnosed so meds were given
rather lightly, then increased to the point where I went hypo,
then another doctor took me off altogether and there I was back
to sky-rocketing hyper!) When my doctor told me two weeks ago
that my levels were creeping into the normal range, I almost
could have told him the same thing just from the way I’d been
feeling and the way some symptoms and complaints were going away.
For the first time in over a year I have had a normal period.
It freaked me out because they’d been lasting only about two
hours. I feel better emotionally….I find I can get excited
over things again whereas before I was so depressed all the
time. My general energy levels are way up. Every day this week
I’ve been able to take my daughter out for a walk before her
morning nap…doesn’t sound like much, but believe me, it is!
I’ve been keeping the house cleaned and cooking dinner every
night and stated a new budget this week. I can concentrate
again on something other than feeling lousy! I feel like a new
person!
Yes, I used to blame GD for everything, and question whether
any little thing was stemming from the disease. Turns out it
was because I have no coplaints at all now. For the first time
in a long time, when someone asks how I am, I can tell them
“fine” and really mean it. -
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