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#Post#: 5392--------------------------------------------------
Re: Chat thread :)
DIR By: Ahiku
Date: July 8, 2015, 7:32 am
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Uff, it’s finally a little cooler now. And we had another storm
yesterday. Ahh o_o° I thought the tree in the inner yard is
gonna fly away.
[member=18]Weisel[/member]
Urgh, sometimes I have a feeling that doctors don’t really want
to help you. I have iron deficiency since 2 years (I’ll never
donate blood again…) and I have to take iron pills ever since
that day. My primary care physician gives me a referral to a
specialist every three month and says that they should give me
an infusion, but the specialist says that I don’t need it,
because my iron value is “growing” even though it's suuuper
super slow...(not really... the value is always varying...) and
I can take more pills (btw. with a lot of unpleasant side
effects like stomach cramps). This time, she told me: “Yeah, an
infusion would help you faster… But pills are better. What if
you react allergic to the infusion and you die? How am I
supposed to explain it then? Take your pills and come back in 3
months.” o_O°
What the heck?
I don't even need to go back there, because she's telling me the
same stuff every time I have an appointment. ^^°
Maybe I should visit another doctor and ask for a second
opinion. I don't really trust that doctor and don't feel as if
she's taking me seriously. I know it's not a pretty bad
problem... there are worse things.
That's why I was always patient... but 2 years is a long time
and it's not that I'm not feeling super great. I'm always tired
and super exhausted. ^^°
My coworkers tell me very often that I look pale and sick,
that's why I feel you with the purple under your eyes >.<
Sometimes I look like a panda... ^^°)
Well, maybe that doctor is right, and it is too dangerous... and
it's okay if I need a couple of years to refill my iron
storage... but I don't really trust doctors anymore, because of
various reasons.
The worst case example was my mom. She had cancer and there was
a doctor who said she was just simulating. (But she said that he
didn't even examined her properly...) Yes, thank you very much
for absolutely nothing. She died and my grandma played with the
thought of proceeding against that doctor. She didn't do it in
the end, because well, we had other problems back then. .__.°
Ok... >.< something else...
You say your eye is twitching... did you try taking magnesium?
o.o Or are you very stressed? My eyelids and a weird muscle in
my left hand are twitching when I'm very stressed.
#Post#: 5393--------------------------------------------------
Re: Chat thread :)
DIR By: Kai
Date: July 8, 2015, 12:48 pm
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@Weisel
Well, that sounds like you definitely are hypermobile and
perhaps a candidate for the hypermobility syndrome, more severly
it could be an Ehlers-Danlos Syndrome. Those things are still
rather unknown and not that well researched yet. There is quite
a bit of research going on currently and it's slowly starting to
spread as slightly more important topic. Might want to read into
some stuff, see if you recognise any symptoms.
Though I am not aware of it causing (early) wrinkles, haven't
heard that before. ^^
@Ahiku
I gotta admit, I've never properly read into iron deficiency,
but it surprises me that it would take you that long to build it
back up if you get proper medication. A second opinion might not
be a bad idea.
I'm very sorry for your loss and it really is sad that some
doctors are just morons that (often) simply don't want to admit
a mistake and just make it even worse...
And on a completely other note. SALVATION it is finally cooling
down a little in Europe! Been at a nice little creek this
afternoon and it was great. Though I was really pleased,
thinking I got a little tan and then I looked at a friend and...
still more than five shades lighter... yes... pale people
'problems'. I'm still convinced I have a little tan, though.
#Post#: 5395--------------------------------------------------
Re: Chat thread :)
DIR By: Weisel
Date: July 8, 2015, 1:49 pm
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@Kai That's exactly what I think it is! I'm seeing a
rheumatologist at the end of the month so I'm REALLY hoping they
think a 'rare' disease like that is actually plausible.
Everything lines up with the symptoms. I can do just about
everything on the hypermobility test (whatever it was called)
and my scar tissue heals into what feels like thin paper, I've
got all kinds of joint pain (my knee specifically has been
giving me all kinds of problems in the past month and sometimes
it's hard to walk even with a brace), my neck muscles are all
tight as though my spine can't keep my head up properly... My
fear with that is that my doctor won't consider EDS as an option
and I'll be stuck looking for a diagnosis that was just missed.
The only way I managed to get a rheumatologist appointment in
the first place was by asking about fibromyalgia (even though I
have symptoms that relate to autoimmune diseases already but
NOPE probably not it! We know what's best for you!) which is
just... I dunno, I think fibro is just the medical world missing
other diagnoses and sticking a name onto it anyway. Bodies don't
just HURT...
As for the wrinkles, I think I just inherited some wrinkly skin.
My mom got wrinkles around her eyes in her 20s so it'd make
sense in that context. I'm not going to age gracefully.
@Ahiku I'm sorry you had to have such an awful experience with
doctors that ended like that. I feel like women are ignored more
and seen as 'overreacting' a lot of times for whatever reasons
(cough SEXISM cough). Last year half my body went numb so I went
to the ER when it didn't stop and the doctor insisted that I was
having a panic attack (which I am 1000% sure I wasn't) and I'm
STILL numb today. Some doctors just refuse to be wrong, even
when they totally are.
Anyway... as for your low iron count, I'm going to ask my
girlfriend's mom about other ways to help besides just pills.
She's a massage therapist plus several other things I can't
remember, but she's got some good information about stuff like
that. And hey, it can't hurt to try. Usually it's easy stuff
like eat more cherries or take this vitamin supplement or
whatever. If doctors aren't being helpful, might as well try the
hippie solutions.
I haven't tried taking magnesium... but you are not the first
person to suggest that, so maybe I should really try to do that.
And heck, it could just be from stress. It's pretty stressful
having my body quit for some reason and have no diagnosis for
it. How am I gonna make a living when I can't walk or stay
awake??
#Post#: 5396--------------------------------------------------
Re: Chat thread :)
DIR By: Ahiku
Date: July 8, 2015, 3:10 pm
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[member=71]Kai[/member]
Thank you. Yes, some doctors are morons. But there are also very
nice doctors. But well, especially when it's a specialist and
you just go there once or twice, you never know if they are nice
or not. Experience reports you can find online are also pretty
subjective...
[member=18]Weisel[/member]
I hope the rheumatologist can help you and that he'll also
consider a rare disease... I bet a diagnosis would help so much,
even if it's rare or not rare... (>.<) Good luck.
But I always get the feeling that...when you're coming up with
something, most doctors are like. "No, that's absolutely
impossible."
Ah, I've already tried a lot, I also try to take my iron pills
with vitamin C, I try to avoid stuff that could block the iron
or something, I also tried vitamin B12, because a friend with a
more severe iron deficiency recommended that stuff. But it
didn't really help. Ah, I can't eat drupes...and apples and
pears, grapes and some kind of berries are also bad. Most red
fruits are bad for me. X'D And my doctor told me to eat them,
but when they make me sick it doesn't help at all, haha. o.o°
[member=71]Kai[/member]
Oh yes! It really is salvation! X'D And the weather homepage
says it's getting even cooler tomorrow. Yes, finally! It's sooo
much better when you're not covered in sweat and totally sticky.
^^°
My windows are open at the moment and there's fresh air coming
in... it's so nice. X'D
But it was really disgusting last night... I woke up at 4am and
it was super hot and wet, totally humid. We're not in the
tropics here.
(And it smelled disgustingly outside. >_<) Usually I like the
smell of summer rain on asphalt, but the rain smelled not very
nice yesterday.
#Post#: 5398--------------------------------------------------
Re: Chat thread :)
DIR By: Kai
Date: July 8, 2015, 4:06 pm
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@Weisel
Well, I do hope as well the rheumathologist will consider and
test for it. Even if it is rare, it's not nonexistent. I hope
you don't have a sever case of something, rather a thing you can
deal with. Massage school isn't the best thing for hypermobile
people. (I'm hypermobile too, and kinda question a little if it
would be a good thing to work in orthopedics, even if I like it.
I have muscle control, but that is exhausting over time and
harder to keep up when you're very tired or distracted.)
@Ahiku
Yes of course, there are brilliant doctors as well. I know a
few. Those who have the guts to ask other people with different
education for their opinion since it's not their specialty are
some I really appreciate...
And a random other question, are you an active person? Do you do
some sports or something to get your body working? That may help
kick up your metabolism which is involved in nutrient take-up.
And that is true about last night. The air was just too stuffy
for that bit of rain coming down. It didn't manage to wash down
everything and made it all sticky.
I do think my patients will be up for more tomorrow, too. I
don't even want to imagine how it is to have fever during this
head.
#Post#: 5399--------------------------------------------------
Re: Chat thread :)
DIR By: Weisel
Date: July 8, 2015, 4:56 pm
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@Kai Yeah, massage school is... not going so well. This is my
third time trying to do some kind of school after high school
and I was like "I'm so interested in this and I love it! I can
help people!" and my body is just shutting down after less than
a year. It's very frustrating! Some people (who don't know about
hypermobility issues) are saying I can probably work around my
health issues and stay in school, but I just feel sick thinking
about finishing all of my requirements for school. Giving 90
minute massages is totally out of the question for me anymore (I
COULD do it earlier this year, not anymore) but giving like...
about 40 of them is a requirement for me to graduate. Not
happening anymore. So yeah, I've been pretty upset about the
prospect of dropping out of school a third time because of my
health. What the heck am I supposed to do now? ;_;
#Post#: 5400--------------------------------------------------
Re: Chat thread :)
DIR By: Kai
Date: July 9, 2015, 12:14 am
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Well, I'd certainly ask the rheumatologist, what he thinks about
your choice of work, if he is going to look into those issues.
One possibility to try (depending on the severity of the case)
is physical therapy. Have someone help you train your muscles to
compensate where the connective tissue doesn't quite stabilise
the joints. I can get through massages quite fine (but I'm not
doing it nearly as often as you would) but I cheat a lot, like
using my elbow for pointed pressure or my knuckles, keep my
nails VERY short, so I can curl my fingers a little more to grip
a muscle... a triggerpoint wood is on my wishlist as well...
I know someone that went from massage to nutrition counselling,
after an operation on her hand that made it impossible to her to
continue on the job. But I don't know what you like, staying in
the health sector or otherwise. ^^
It sucks to be forced to quit something you like or not get to
finish... I changed my major two times to find what I want and
one more would have made me feel really awkward.
#Post#: 5401--------------------------------------------------
Re: Chat thread :)
DIR By: Weisel
Date: July 9, 2015, 3:29 am
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I've already learned to compensate a lot, but it's getting to
the point that even just being on my feet for a while isn't good
for me. Like... walking only makes me hurt more. I'll definitely
have to ask when my appointment comes around, though it's
probably too late by that point with all the school days I'm
missing. I'm guessing I'll eventually end up doing physical
therapy for my knee since that keeps giving out (it's the
scariest on the stairs, I'm really going to fall one of these
times), maybe for my wrists, too. Jeez, I feel like an old lady.
I don't know, I feel like I can't do anything anymore, at least
not professionally.
#Post#: 5573--------------------------------------------------
Re: Chat thread :)
DIR By: Ahiku
Date: August 14, 2015, 12:34 pm
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God, it's so freaking hot, I can't stand it any longer. X'D
*laughs hysterically and drowns in her own sweat*
#Post#: 5574--------------------------------------------------
Re: Chat thread :)
DIR By: Ghosty
Date: August 14, 2015, 8:04 pm
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at the beginning of summer it was hot here too, but now it just.
rains. 24/7.
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