I obviously didn't write the essay posted below but I agree with it.
(Related--
This article is great too. )
I know SGs on here with disabled kids. I worked with severely medically fragile and special needs kids myself. I am disabled and was sick (often seriously) as a kid too. Both my maternal grandparents have been disabled my whole life (my grandmother was...
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(Related--
This article is great too. )
I know SGs on here with disabled kids. I worked with severely medically fragile and special needs kids myself. I am disabled and was sick (often seriously) as a kid too. Both my maternal grandparents have been disabled my whole life (my grandmother was...
Read More
VIEW 18 of 18 COMMENTS
lethal:
jayded1:
So glad I stumbled across this blog post. As a person with M.S since age 11 I know exactly how you feel.
VIEW 25 of 60 COMMENTS
clutch12:
Stunning! <3
abigael2014:
Very cute
This week I am ordering my wheelchair. It will be hot pink with pink spokes on the wheels and the seat will be black.
I am much weaker than we originally thought. On days when I am eventually stronger I will still need the braces to walk. I think I will even need to wear them in the chair.
Please vote for my set Princess...
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I am much weaker than we originally thought. On days when I am eventually stronger I will still need the braces to walk. I think I will even need to wear them in the chair.
Please vote for my set Princess...
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VIEW 15 of 15 COMMENTS
punkerbell:
I can't wait to see your new set hun!
I can't believe the doctors treated you like, ugh. Hopefully Cedars will be better.
I can't believe the doctors treated you like, ugh. Hopefully Cedars will be better.
jozsef:
I'm glad I finally stumbled on you, so to speak.
The experience you describe with the ER staff is very disturbing. Sometimes people can be very difficult to reach because they are so rigidly programmed that their assumptions overwhelm their own direct experience. Perhaps they saw pink hair and a nose ring and categorized you as completely brainless, which seems strange in 2012, but anything's possible. You may be able to acquire some new communication skills for that sort of person since you will unfortunately be seeing more of them. I would, in a very quiet, polite and serious tone, ask if I seem incoherent or irrational because I'm unaccustomed to being treated like I have a mental deficiency. Best of luck.
The experience you describe with the ER staff is very disturbing. Sometimes people can be very difficult to reach because they are so rigidly programmed that their assumptions overwhelm their own direct experience. Perhaps they saw pink hair and a nose ring and categorized you as completely brainless, which seems strange in 2012, but anything's possible. You may be able to acquire some new communication skills for that sort of person since you will unfortunately be seeing more of them. I would, in a very quiet, polite and serious tone, ask if I seem incoherent or irrational because I'm unaccustomed to being treated like I have a mental deficiency. Best of luck.
VIEW 16 of 16 COMMENTS
temper:
I'll post that request for you in the Bullies group.
marlene:
Only a few days before your new set in MR <3
Be sure, you'll have my vote perfect Adria!
Be sure, you'll have my vote perfect Adria!
VIEW 9 of 9 COMMENTS
6sand7s:
Keep fighting the good fight and Rock on lady.
aveirarayne:
The one picture scared me for a minute. For as long as I have remembered I have been able to bend my fingers down like that in the one pic, same with my toes. I checked it out but dont think I have any other symptoms.
I hope it all works out for you! Good job in fighting hun, your an inspiration!
I hope it all works out for you! Good job in fighting hun, your an inspiration!
I have learned so much in the past few days!
My Hypermobility type EDS can cause secondary conditions like Postural Orthostatic Tachycardia Synndrome (low blood pressure, dizziness, fainting, fatigue, jumps in blood pressure from sitting to standing, anxiety like symptoms, irregular heart beat, cold extremities), Horton's Syndrome (a kind of cluster migraine condition) and Tracheobronchomalacia (TBM). (TBM is a dynamic collapse of the airways on...
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My Hypermobility type EDS can cause secondary conditions like Postural Orthostatic Tachycardia Synndrome (low blood pressure, dizziness, fainting, fatigue, jumps in blood pressure from sitting to standing, anxiety like symptoms, irregular heart beat, cold extremities), Horton's Syndrome (a kind of cluster migraine condition) and Tracheobronchomalacia (TBM). (TBM is a dynamic collapse of the airways on...
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VIEW 17 of 17 COMMENTS
paulnikon:
I hope you are feeling better and getting better.
brassbancroft:
Knowledge is power. Glad you have a better idea of what you have.
And D&D over Skype? Novel idea!
And D&D over Skype? Novel idea!
DIAGNOSIS
I have Hypermobility Type Ehlers Danlos Syndrome. I have my prescription for reinforced knee and ankle braces (and I wear a wrist brace now as well) and get pool physical therapy twice a week.
I still need some DNA testing to rule out or confirm the scary Vascular Type of EDS and I still need an echo cardiogram to check for a common heart...
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I have Hypermobility Type Ehlers Danlos Syndrome. I have my prescription for reinforced knee and ankle braces (and I wear a wrist brace now as well) and get pool physical therapy twice a week.
I still need some DNA testing to rule out or confirm the scary Vascular Type of EDS and I still need an echo cardiogram to check for a common heart...
Read More
VIEW 25 of 32 COMMENTS
pyromethious:
It's amazing how much of a relief it is to have a name to something huh? Even if it doesn't change anything, it sure does feel good! I'm getting a physical and RA testing in a month as well since I'm "on the third decade" and haven't been checked in a bit.
thirteenxd:
Knowing is half the battle. I've found out about something scary recently too. I found out I have Polyostotic fibrous dysplasia. It's rough finding out something is wrong with yourself. We like to think It could never happen to us... I certainly thought that after finding out there's only 9k reported cases of it and no cure or treatment. Well anyways I'm glad your finding out some information! It means your one step closer to getting some treatment! Keep your head up. We're all here for you!
Well I hope everything goes well for you from now on.
Cheers
Well I hope everything goes well for you from now on.
Cheers
VIEW 19 of 19 COMMENTS
heathen:
The suspender lingerie is amazing. Wishing you the best with your health XoXo
bassment13:
You’re truly an inspiration to me 💕
VIEW 13 of 13 COMMENTS
uvita:
WOW I LOVE U!
drhamburger:
Hey/// I thought of you when I came across this rad project. I"m trying to spread the word for them as well as let ppl know who I think can continue to spread the gospel.
Enjoy the Softrock.
Enjoy the Softrock.
The Maxim issue I am in along with Starla, ZakSmith and the other girls we play Dungeons and Dragons with is out! I have yet to see it. Zak is the only one of us not naked. And yes it was shot in my apartment in LA.
*edit* Zak got us a pdf of the article from Freakpirate. So far--he hasn't read the...
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*edit* Zak got us a pdf of the article from Freakpirate. So far--he hasn't read the...
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VIEW 10 of 10 COMMENTS
notoriouscat:
I will check it out at work tomorrow.
temper:
Pictures or link immediately!