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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 13 of 13. This is the beginning of the thread.
Posted by Squiggles on September 9, 2002, at 10:24:52
In the past seven years or so, I have had to
go through many medical misadventures, that
were traumatizing:- (thyroid storm in which
i could not sleep for more than 3 hrs per night
and had heart-attack like panics with the Emergency
called every now and then and profuse sweating,
palpitations, etc. - for about 6 months; until
the dose was finally taken down to a tolerable level.- broken foot (requiring crutches for a few months;
I think this was after my Rivotril was raised and i
got dizzy;- i was getting withdrawal and dyspnea from Rivotriland
had to sit up on all fours to breathe until the
drug was processed - somehow this happened when close
to the lithium drug;- two drug withdrawals (difficult years and risk in effort)
- about 12 years of daily panic attacks before i discovered it was
the Xanax;- 13 teeth removed under general anaesthesia
because of panic attacks and consequent awkward
speaking and eating; a 4 hour operation, with
difficult recovery from the drug interactions;
- hypothyroidism which in itself makes
me tired and has made me gain a lot of weight
- and the seizure/stroke episode,- along with the
peripheral neuropathy of my hands where i had
to wear stilts for 3 months;I'm really tired. And I think that people
near me are tired of having to put up with me
in that state for all these years - i used to
be a very energetic and vivacious woman;
It has taken a lot out of me emotionally and
psychologically, and also the pro and anti- psychiatric war on the
net, has left me exhausted.Presently, I find peace in solitude. I really
don't like socializing. Not only because I am
tired, but because i have diarrhea every morning
(and that can be anywhere from one to 4 hours
after waking up - very sudden) and i have to drug up
every hour - making it socially inelegant to say the least. So, I do
a lot of work and stuff at home. I am also very
self-conscious that my psycopharmacological state
won't remain steady while i am with people, e.g.
vertigo, headache, sweating, my appearance -- what do you say --
i usually apologize with a tale that i have a
thyroid disorder - but it's humiliating.I don't mind living secluded, but my husband
is worried about me
and my net addiction, particularly my obession
with trying to find out if they didn;t fuck up
just on the maintenance therapy but on the diagnosis
as well. He thinks i should get out more and
not be so isolated, and just accept the fact that
if a mistake was made, there is no reversing it;
and i am stablized now.Somehow, from my life experience, I just can't
believe that would be really good for me. I really
am tired.Does anyone else feel like that? Is it so
abnormal?Squiggles
Posted by judy1 on September 9, 2002, at 12:51:40
In reply to Tired of illness, posted by Squiggles on September 9, 2002, at 10:24:52
After all you have been through, no I don't think it's abnormal to want to isolate yourself. The key is it's not healthy for you, and I imagine your goal is to become the vivacious woman you once were. I haven't been through nearly the trauma you have (mine is childhood based, not recent) but I do force myself to go to therapy at least once a week, she wants twice. You've never mentioned the therapy part of your treatment, are you getting any therapy? You may want to switch over to PPB, and get more support there. take care, judy
Posted by Squiggles on September 9, 2002, at 12:58:40
In reply to Re: Tired of illness » Squiggles, posted by judy1 on September 9, 2002, at 12:51:40
thanks very much Judy; actually,
i never thought of that - maybe it
is a good idea to find someone to
talk about that aspect of my life;thanks - i will look into it :-)
Squiggles
(btw, my childhood was full of trauma too -
grew up without parents - somehow that didn't
bother me)
Posted by IsoM on September 9, 2002, at 15:29:42
In reply to Re: Tired of illness » judy1, posted by Squiggles on September 9, 2002, at 12:58:40
Squiggles, what precipitated the thyroid storm you mentioned at the beginning? Was it too much thyroxine taken or was it hyperthyroidism instead?
I think Judy gave good advice about finding a therapist to talk with. Don’t be discouraged if you don’t initially find a good one. You may be lucky first time but it can take a bit of hunting. Is there anyone whose opinion you trust, you could ask? A doctor or perhaps any nurses? Nurses can often be under a lot of stress & many have used the help of therapists. They may also be more sympathetic & understanding. I find that the nurses who work helping in doctors’ offices are some of the best with bits of advice.
I know from a couple of times when I was at my worst, I could NOT face people & I withdrew too. I NEEDED to. If I was to improve, I had to keep my stresses as low as possible & being around others was far more than I could bear. One beautiful summer, I spent most of it in my bed. Normally, I, too, am very outgoing, energetic, & chronically cheerful but those few times, I wished I just didn’t exist. Not suicide as I could never do that to those I love, but I sure wish I had never been.
I found that forcing myself, when I felt slightly better at times, to see a close friend of family member was the best thing to do. Short visits outside of my home. Besides, my house was in such a state of disorder that I would never want anyone over. Are you comfortable seeing someone in their home for short visits? If not, how about an hour in a park together, sitting on a bench or walking in the fresh air? Small, short visits that leave you feeling better rather than stressed out. Slowly, you may feel more comfortable for longer visits or even going somewhere with someone else. Nothing that leaves you exhausted but slightly invigorated instead.
Posted by Squiggles on September 9, 2002, at 15:51:23
In reply to Re: Tired of illness » Squiggles, posted by IsoM on September 9, 2002, at 15:29:42
You're very kind judy1;
I may just be going through a slump - it has
been hot. Basically, there have been too
many disappointments and i never know if
i truly am bipolar.About the thyroid - I had stopped taking it
because i kept getting diarrhea, not sleeping,
and constantly nervous and severe anxiety;
problem is i did that for a yr. and got very
hypothyroidic - my ankles very swollen etc.
So i called a nurse (yes, they are angels imho)
and she said go the emergency right away;You know we are overwhelmed here with medical
probs. so an intern saw me because my dr. could
not, and he didn't really listen i think, and
gave me a very high dose, which made hungry like
a wolf, sleepless, panicky, terrified, and constantly
diarrhetic, and could not breathe, etc.I went to a clinic and the dr. (i saw what he wrote)
"overcorrection of thyroid" or something; anyway,
the Synthroid was high to begin with, then i had none,
and then with this high dose, it just about gave me
a heart attack.Gradually, my dr. lowered it from 0.175 to 0.112
-- thank God --I am slightly hypo now, but i don't care, and my
dr. says if anything higher gives me those heart
blocks don't do it - so i don't care if i am hypo.Just a bit low because of so many failures in my
life. My Ph.D. gone for 5 marks for example, and
my job, etc. I did have a small victory (getting
off XANAX) - thanks to Ray Nimmo and my courage
to hunt the net, but i don't really have much strength
left to take on more challenges.anyway, thanks for the kind words;
Squiggles
Posted by madison88 on September 9, 2002, at 19:58:44
In reply to Re: Tired of illness » IsoM, posted by Squiggles on September 9, 2002, at 15:51:23
Does it matter so much if you actually are bipolar? I mean, getting labled can be good or bad for insurance purposess, depending on what they want to cover. But screw them, and drs who throw out labels and pyschiatrists who have a formula they follow (bipolar = one part this and one part that, etc). they are suppose to listen to you, try to understand how you are doing and to go from there. don't you fall into the trap of thinking that the label is what your health depends on. you are how you are, don't make apologies for deviating from the norm, please. please see a psychologist. from my experience they are more willing to spend an hour talking with you about you and not how you are or are not fitting the mold of a particular diagnoses. Counseling psychologists, vs clinical psychologists, are even better, are more sensitive, to treating you as the holistic entity you are.
Your post got me going b/c i see the same tendency in myself, to take the ill part of me and have it be all i see in myself. i forget that my problems are just one aspect of who i am. i hope you see somebody in the mirror who is more than just a bipolar, or a depressive, or whatever else you deal with. It is there, if you can't see it--that's what therapy is for.
Posted by Squiggles on September 9, 2002, at 20:10:41
In reply to Re: Tired of illness, posted by madison88 on September 9, 2002, at 19:58:44
Gosh,
i don't how this happened but the "labels
is for insurance companies" is something i
just read somewhere - like deja vu; you are
very insightful i think -- i have always been
stubborn about the fluffy side of psychiatry;
thinking that psychologists just talk - you
know - i may as well talk to myself.But maybe it is worth a try - just to get
another perspective - perhaps it's a good
adjunct therapy for everyone who gets neurotic
with their illness - it is to get so when
you are labelled as you say.I might look into it - i am terribly shy
but once i open up there is no stopping, as
you have probably seen here.Seriously, thanks for the advice - i might
just take it. I think i am getting the
best medical care but i am always worried
about what is going to happen next - oh no
is going to be uremia - that kind of thing.cheers
Squiggles
Posted by Compucat on September 10, 2002, at 20:00:21
In reply to Re: Tired of illness » IsoM, posted by Squiggles on September 9, 2002, at 15:51:23
hi Squiggles...
I'm sorry to hear that you're having
a rough time. Not that it's any worse
for anyone else, but you're always so
ready to send a word of encouragement
or a helpful idea to someone. I just
wish we could supply you with a magic
formula.I do think that any little thing that
you can do during the day that makes
you maintain some kind of daily routine
is a good idea. And it doesn't have to
be anything spectacular. Do you still
have your dog? I bet a short walk
outside would be in order. Do you
wear any makeup - and if so, have
you stopped doing so? Maybe put some
lipstick on tomorrow if it makes you
feel good about yourself. Are there
any mood disorder groups in your area
that you could get in touch with?
People there surely wouldn't judge you,
and would be more than willing to mail
you some information, pick you up to
attend a meeting, or just phone you
to say hello. I joined one in my area.
So far I haven't attended a meeting
because of the distance, but it's
nice to get the monthly newsletters
and know that those people are there.Squiggles, in the time that I have
gotten to know you online, I just
feel that you have a number of things
to be proud of. You are an incredibly
intelligent woman. I love your
quick wit and your ballsy nature
that you always back up with a ton
of knowledge. Besides having a mind
as sharp as a tack, you have the
astounding ability to communicate well.
Regardless of whether or not you missed
your Ph.D by 5 marks (excuse my ignorance
here - is there any way of making that up?)
there must be SOME way you can be sharing
what you have learned in your lifetime -
would you ever consider writing a book?
what about speaking at a mental health
forum? or... (this one is going out on a
limb) what about writing/starring in a
one woman play about bipolar illness?
There just HAS to be a reason why we go
through this, even if it is JUST to pass
on our experiences to a few people who
have never heard of our illness. At least
then we are giving back in some small way.Squiggles, in your last sentence you
say, "...but I don't really have much
strength left to take on more challenges".
I hope you can work to taking steps
to change that sentence to "but I am
temporarily not taking on challenges",
and work your way back to the happiness
that is you.much caring and big hugs,
compucat
Posted by bookgurl99 on September 10, 2002, at 23:37:03
In reply to Tired of illness, posted by Squiggles on September 9, 2002, at 10:24:52
Squiggles, I understand your frustration at being a medical mystery.
From what you've typed, I can see that you're a very intelligent, creative, gifted woman with some perplexing physical problems. (I've had similar experiences, btw -- I'm hypothyroid, have been overtreated myself, along with the intractible insomnia, and have also done the 'staying up to breathe for 4 hours' due to a drug reaction.)
Hypothyroidism alone caused me to feel antisocial when I was undertreated. I'm glad you finally found a good dosage for yourself; that is one hair-tearing experience. And I'll tell you, working at supporting myself from a physical angle -- esp. doing things that support my adrenal glands (giving up _all_ processed food and switching to veggies, fruit, and meat for example) has really helped me to better enjoy myself. (You prob'ly knew that sometimes having your thyroid treated further exhausts your adrenals, right? Because they were sort of underactive and underdeveloped when your thyroid was out of comission.) Now I can go over to a friend's house without needing to lie down on the couch!!
On top of that, you've had the stress of numerous physical ailments. I'd be surprised if you weren't still overcoming some of the trauma associated with all of that; your mind and body need time -- a regular routine, good nutrition, and rest -- in order to heal from that.
So, you've been through so much and it's time to be kind to yourself. I read your note and I get the impression that you're settling for less than the life that you need. And I don't know exactly what you dream of doing, or what you need, but I get the impression that you need -stimulus!- -passion!- -energy!- spark!! something to make your life enjoyable again.
some suggestions, (which i know you've already though of but it's hard to get started so i'll reiterate what you've thought here):
- you seem so social on the board. is there any forum you could socialize in and be stimulated? for me, i go to a unitarian group that makes me feel accepted _ and_ intellectually fulfilled. depending on what you like to do, your place could be a monthly meeting of a philosopher's cafe, the local goddess worship group, or -Hypo and Happy!- support group.
- you are so smart. could you put these smarts to good use by finishing off your phd (what was it in, anyways?), taking a class, or volunteering to teach computer skills to needy adults at a community center?
- getting off so many drugs! sweatiness, confusion, etc. you sound way overmedicated. you say you have to drug up every hour; is it possible to change your regime? this sounds way too harsh, like you've tipped the balance from helpful to negative as far as side effects go.
- generally, without 'settling' or giving in for less than you deserve, accepting and loving yourself for who you are right now, knowing that despite the 'fake fat' of hypothyroidism, you are a beautiful shining woman inside. loving yourself means letting yourself rest, doing nice things for yourself, dressing like you care about yourself, and gettin' out in the world to let other folks see how awesome you are.
Well, hope my support helps you out a bit. I'm really glad that you shared how you feel, since you're so good to us all here on the board.
*hugs* hope you have a great day/night. :D
bookgurl99
Posted by Squiggles on September 11, 2002, at 7:58:28
In reply to Re: Tired of illness, posted by Compucat on September 10, 2002, at 20:00:21
I'm embarrassed by your compliments;
thank you -- and thank you for taking
the time to give so much attention.I will consider what you say and make
an effort to see the bright side of life
(maybe put on that Monty Python song);
thanks for your very kind words and encouragement;Squiggles
Posted by Squiggles on September 12, 2002, at 8:06:51
In reply to Re: Tired of illness, posted by bookgurl99 on September 10, 2002, at 23:37:03
hi bookgurl99,
I'm sorry i've been unsuccessful answering your
careful post. Thanks.I didn't know that the adrenals got exhausted
with hypo - maybe that's why i feel like 600 lbs
when i wake up in the morning.You give good points and ask some good questions.
The thing about drugging up every hour - well
it's an exxageration - actually it is my Rivotril
which i have cut up in halves - and that is a
leftover from withdrawal and then reinstatement
when i got slammered - the halving of course
multiplies the pill taking, and then there is the
lithium and the Synthroid - but there is no
way i am attempting any more withdrawal without
medical assistance - no way.As for diet, yup i could improve on that - chips
and Cheetos are empty calories.And as for doing something - i was considering the
possibilities, and thought may i could try writing
something and maybe a bit later resuming studies
at university.I am getting much better - the reinstatement of
Rivotril after a couple of years of very bad
withdrawal is doing me a lot of good - i feel
more steady, so i am optimistic.Believe it or not, because it is just me and
my husband who is terribly overworked busy,
leaves me with a lot of responsibility for the
household management, the pets, the finances,
etc. So, i do work at home, i just don't have
the more meaningful academic life is hoped for.The net however, is wonderful.
Anyway, thank and good luck with your thyroid
dose - you are right about getting the precise
level - unfortunately you have to rely on
feedback from your own body - so you are your
own guinea pig so to speak :-)take care and thank you;
Squiggles
Posted by katekite on September 17, 2002, at 7:05:49
In reply to Tired of illness, posted by Squiggles on September 9, 2002, at 10:24:52
Hi Squiggles,
Have you ever tried a beta blocker for control of vertigo, headache, sweating?
kate
Posted by Squiggles on September 17, 2002, at 7:09:49
In reply to Re: Tired of illness, posted by katekite on September 17, 2002, at 7:05:49
Hi Kate,
No i have not though my husband is taking
them instead of benzos after he saw what
they did to me; actually the Klonopin is
OK if i just stay on it for the rest of my
life.Tx for the suggestion;
Squiggles
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