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 Post subject: Re: Rare diseases support
PostPosted: Fri Aug 17, 2012 5:47 pm 
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OBVIOUSLY.

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 Post subject: Re: Rare diseases support
PostPosted: Fri Aug 17, 2012 8:23 pm 
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Dear God. My stomach is so bad I think I might be dying. And I ran out of medication and really don't feel up to going to the pharmacy. I hate this so so much.

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 Post subject: Re: Rare diseases support
PostPosted: Fri Aug 17, 2012 8:26 pm 
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Semen Strong
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Oh no! I am so sorry j-dub. I hope things get better and you feel better soon. So so so sorry you're having a rough day. <3 <3<3

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 Post subject: Re: Rare diseases support
PostPosted: Fri Aug 17, 2012 8:57 pm 
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Fair trade, organic mistletoe
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Thanks, T. I appreciate how supportive and kind you always are.

Unfortunately, my usual pain methods are failing me (and have been increasingly so lately) so I may have to just force myself to get to the pharmacy. Or hope my roommate will come home soon and feel sorry for me.

The worst part is that I took the day off work with the express purpose to recuperate from how shitty I've been feeling lately and here I am having another attack.

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"I'd rather have dried catshit! I'd rather have astroturf! I'd rather have an igloo!"~Isa

"But really, anyone willing to dangle their baby in front of a crocodile is A-OK in my book."~SSD


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 Post subject: Re: Rare diseases support
PostPosted: Sat Aug 18, 2012 10:26 am 
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I have been vomiting about once a month for a year and a half. Now I have some pills that will stop me from the actual act of throwing up, but the feeling is there like I did it and it knocks me out for about a day.


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 Post subject: Re: Rare diseases support
PostPosted: Sun Aug 19, 2012 9:06 am 
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Doctor: I've got your test results and I have some bad news. You have cancer and Alzheimer's.

Patient: Boy, am I lucky! I was afraid I had cancer!

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 Post subject: Re: Rare diseases support
PostPosted: Sun Aug 19, 2012 9:08 am 
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A pile of vomit walks into a bar, sobbing uncontrollably. The bartender asks, "What's the matter?"
The vomit says, "Sorry to be all sentimental, but this is the place where I was brought up."

I'd never have tought I'd google "JOKE+VOMIT"
Life is full of surprise

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 Post subject: Re: Rare diseases support
PostPosted: Sun Aug 19, 2012 1:56 pm 
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Vomiting would actually be worth it, if alcohol was involved ;)


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 Post subject: Re: Rare diseases support
PostPosted: Sun Aug 19, 2012 2:23 pm 
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Drunk Dialed Ian MacKaye
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i don't have any rare disease (thankfully!), but my best friend was diagnosed with myasthenia gravis just under a year ago. it's pretty tough having someone you love a whole lot being sick with a chronic disease that cannot be treated.. there is medication, but it makes her really ill, and they haven't found the right combination for her yet.

it makes me really sad that she will suffer from this forever. even on the good days, she has to take really good care not to exhaust herself (which takes half of what it takes to exhaust everyone else!), and she keeps getting sick with other things because they are holding her immune system down with medication. the drugs messes with her head so badly, so she's been having trouble with old psychological diagnoses aswell (which is the reason they are still meddling with her meds..).

i just wanted to throw it out there. it is really hard being supportive in a constructive way, because it's hard to find out when to push her (in a positive, reaffirming way) and when to let her just lie in bed for days.

i've been cleaning her apartment about once a week since she got ill last summer-ish (i get paid for it), and sometimes it's pretty hard having someone depend on you in order for them to get simple everyday tasks, because it can be hard to keep the balance between healthy friendship dependency and unhealthy dependency.

i just really want for her to get an education, get up and do stuff that will make her happy, and not have her feel like her life is meaningless. i mean, this is one hardcore disease, and she can get really ill and it makes it pretty much impossible to make hang out dates and stuff like that, because most days when i get to her apartment she is still in bed.. i really miss the old days, when we'd go out and do things, and she'd have energy and we could talk about the future.. and now everything is uncertain.

i am trying really hard to deal with this in a good way, but damn, it is hard.


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 Post subject: Re: Rare diseases support
PostPosted: Sun Aug 19, 2012 3:15 pm 
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I have rarish conditions, more than diseases: vitiligo and recurring SPONK (spontaneous osteonecrosis of the knee, which has been flaring up every 2 or 3 years). And trigger finger(s), for which I've had three (minor) surgeries.

And one non-rare, but still awesome, disease: type 1 diabetes.

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 Post subject: Re: Rare diseases support
PostPosted: Sun Aug 19, 2012 3:57 pm 
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Smoothie, thanks for sharing! At my work we lost a co-worker a few weeks ago from a rareish disease. Two years ago he was diagnosed with multiple myeloma. And while I wasnt in his life outside of work. It really sucked watching him get worse in such a short time. I spoke with him often about his diagnosis and treatment and his struggles and always wished there was something more I could do or say. Stat strong for her! You are being an awesome friend.

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 Post subject: Re: Rare diseases support
PostPosted: Mon Aug 20, 2012 10:51 am 
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faeljeck09 wrote:
what did the doctor told you?


Never got to ask. The spot went away like you will once the admins realise you're a sigspammer.


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 Post subject: Re: Rare diseases support
PostPosted: Mon Aug 20, 2012 3:59 pm 
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I've had Bell's palsy for a little over a month. I wish I would have found this thread sooner.. like the first day when I freaked out.

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 Post subject: Re: Rare diseases support
PostPosted: Tue Aug 21, 2012 3:44 pm 
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julialegume wrote:
I've had Bell's palsy for a little over a month. I wish I would have found this thread sooner.. like the first day when I freaked out.


Hey hey miss legume!

Oh that sucks I'm sorry :(

... Well regarding the thread: if it's any confort, anyway it's there for only two weeks... Otherwise you'd definitely have found it; the first day is a weird moment indeed (assuming it's kind of a similar emotionnal process to everyone?); one of my first reaction was seeking to find OTHERS ... I wasn't freaking out nor had any specific question, it's just that I didn't want to be alone.

Thanks to the web I quickly found people (even better: it took me only 26 hours to find another vegan one!!!); well I had been feeling sad and lost and scary but as soon as I could chat with people I felt like Harry Potter when he meets other wizzards! This is a warm feeling I will never forget.

So I assume you could find people on the web?

hugz!

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 Post subject: Re: Rare diseases support
PostPosted: Thu Aug 23, 2012 11:25 pm 
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Naked Under Apron
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Location: Central PA
As I predicted, now that I'm walking around campus a lot, my ankle is hurting like hell. Hips and knees, too, but the ankle is the worst.


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 Post subject: Re: Rare diseases support
PostPosted: Fri Aug 24, 2012 2:10 am 
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Larisa wrote:
As I predicted, now that I'm walking around campus a lot, my ankle is hurting like hell. Hips and knees, too, but the ankle is the worst.


O nooo I hate joint-pain.

I mean: headaches etc, they are horrible, but at least I'm familiar with it. But yesterday I had ELBOWache ... what is this???? Elbow??? months ago I had never thought an elbow could hurt...
Joint pain is just so weird >:(

Hips pain is probably the worst, when it makes you walk like a drunk duck.... :|

hugz Larisa! Hope you have stuff that makes you feel less horrible :-(

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 Post subject: Re: Rare diseases support
PostPosted: Fri Aug 24, 2012 9:12 am 
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Thanks.

I'm TENSing my ankle now, and I rescheduled some stuff so that I'm only doing the essential things today. Unfortunately, one of those essential things does involve some walking, but I'm saving it for the afternoon, after I've rested a bit.


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 Post subject: Re: Rare diseases support
PostPosted: Sat Aug 25, 2012 9:11 pm 
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julialegume wrote:
I've had Bell's palsy for a little over a month. I wish I would have found this thread sooner.. like the first day when I freaked out.


Hi Julialegume!
If you're still wearing an eyepatch, and if you're sick of that eyepatch, I'd be glad to crochet you something cute to go over it!

xo
kittee

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 Post subject: Re: Rare diseases support
PostPosted: Sun Aug 26, 2012 3:04 am 
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I didn't mention this in my earlier post on this thread, but I've also got a kind of half-diagnosed thing going on. It involves various and random tendons getting inflamed, and it kind of comes and goes. It started with both my index fingers getting totally swollen and stiff for no good reason. I got sent to a rheumatologist who ruled out RA, but said that it looked like a mild form of Psoriatic Arthritis. The weird thing is, unlike PA, I doesn't affect the joints (at this point) but just the tendons, and while I've got some skin issues (particularly in my ears), I've never gotten a diagnosis of psoriasis. Nevertheless, it's what he suspects is going on.

Anyway, I've had inflammation in various areas (elbow, knee, knuckle, wrist) and it's usually something I can live with. But sometimes it affects an area that's really painful and restricts function. The fingers were like that, and were successfully treated with a steroid injection to the area. Now, all of a sudden, the second toe on each foot has become swollen and sore. I keep hoping it will go away on its own, because it's a pain to make an appointment with this guy (he's only reachable one day a week), and I really don't relish the thought of getting an injection in my foot. But the one on the right is so swollen it feels like it could burst (I know it won't, but that's how it feels), and walking is painful. :(

My wrist is really bothering me too, right now. Closing and opening my bra sucks at the moment.

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 Post subject: Re: Rare diseases support
PostPosted: Sun Aug 26, 2012 1:19 pm 
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smoothie wrote:
it makes me really sad that she will suffer from this forever. even on the good days, she has to take really good care not to exhaust herself (which takes half of what it takes to exhaust everyone else!), and she keeps getting sick with other things because they are holding her immune system down with medication. the drugs messes with her head so badly, so she's been having trouble with old psychological diagnoses aswell (which is the reason they are still meddling with her meds..).

i just wanted to throw it out there. it is really hard being supportive in a constructive way, because it's hard to find out when to push her (in a positive, reaffirming way) and when to let her just lie in bed for days.

i just really want for her to get an education, get up and do stuff that will make her happy, and not have her feel like her life is meaningless. i mean, this is one hardcore disease, and she can get really ill and it makes it pretty much impossible to make hang out dates and stuff like that, because most days when i get to her apartment she is still in bed.. i really miss the old days, when we'd go out and do things, and she'd have energy and we could talk about the future.. and now everything is uncertain.

i am trying really hard to deal with this in a good way, but damn, it is hard.

I'm glad you brought this up because I had been dealing with the same sort of stuff with my mom. It was really hard. I would go visit and she would spend my entire trip in bed, or if we would go out she would be exhausted within a few hours. It was so hard not to get frustrated, but I absolutely did not want to be one of those people who blamed my mom for the way she felt. It was really hard dealing with people who didn't understand the concept of an invisible disability. People would offer unsolicited and uneducated medical advice like, "she's on too many medications, if she went off them she would feel better". Seriously.

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 Post subject: Re: Rare diseases support
PostPosted: Mon Aug 27, 2012 4:10 pm 
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kittee wrote:
If you're still wearing an eyepatch, and if you're sick of that eyepatch, I'd be glad to crochet you something cute to go over it!


Aw, yeah! Thanks, kittee. I don't wear it as much as I should, but I'd be more apt to wear it with something crocheted over it.

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 Post subject: Re: Rare diseases support
PostPosted: Mon Aug 27, 2012 6:12 pm 
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I also have idiopathic recalcitrant flushing, or vascular rosacea, or something.


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 Post subject: Re: Rare diseases support
PostPosted: Tue Aug 28, 2012 2:07 am 
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Naked Under Apron
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my shoulder hurts. all. the. forking. time. especially when i'm in bed. i find it exhausting.

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 Post subject: Re: Rare diseases support
PostPosted: Wed Aug 29, 2012 11:41 am 
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I guess I qualify as a member of this club. I have one not-so-rare, and one extremely rare weirdness.

The first is celiac disease (1 out of 100 people or so) which is an auto-immune disorder. In the presence of certain protein structures (gluten, casein, glutamines, etc) the immune system attacks and destroys the small intestine. Solution: lifelong avoidance of these proteins.

And the other is an MTHFR defect - extremely rare! I'm genetically missing the enzyme that allow your body to utilize the nutrient folate and run the methyl processes of your body. It affects the performance of absolutely everything in your body. Like, your ability to make the neurotransmitters in your brain. Or repair the linings of your organs. Or run methyl detox in your liver, etc. But the solution is fairly simple. I have to take the methyl group, the enzyme, and the folate all together in the form of Methylfolate (twice daily, for the rest of my life. I also take methylB12, because folate and B12 need each other. And a methyl-group donor SAM-e. Believe me, my brain does not work at all without it! I love that shiitake!) otherwise, I go insane, get extremely toxic, stop repairing my organs, etc. Which was the condition I was in when I was diagnosed a couple of years ago. Such fun. I am so much better now. But I still have my occasional bad brain days. And my energy is inconsistent enough that it prevents me from being able to reliably hold down a job - which is something that I really struggle with. I'd love to be able to be self-sufficient at some point. And, as I mentioned, this is genetic. And evidentally, my mother has this too. When a woman conceives, the child within her is growing quite rapidly, so the fetus is using all kinds of folate, especially in the earliest stages of the pregnancy. If the baby's not getting enough folate, it can develop mid-line defects. I have two: a bifida occulta at the base of my spine (like spina bifida, but closed) and a deviated spinal column, a.k.a. scoliosis. My spine was surgically fused in my teens, which slightly limits my mobility. But I'm now 52 years old and still fairly active. So, overall - I'm doing really well!

I also have pain issues, which may or may not be related to the rest of this. Still trying to get to the bottom of that. Maybe all I need is a little MSM powder to assist my detox processes. Going to try that soon!

OK - enough of me! On with the rest of our weirdnesses!

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 Post subject: Re: Rare diseases support
PostPosted: Wed Aug 29, 2012 11:48 am 
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kittee wrote:
my shoulder hurts. all. the. forking. time. especially when i'm in bed. i find it exhausting.


OMG~ me too!! yuck!!! super-frustrating!

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