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 that will be up in member review soon as the money from that set will help me afford my chair.
I spent Friday in the ER. My condition (the EDS and POTS) was ignored. The information I gave the doctors was ignored. My explanation that I had already signed a release of information form for the echocardiogram I had last week and that they should get the results was flat out refused. I have had serious POTS symptoms for 5 days, acute heart pain, chronic chest pain, difficulty breathing and pretty nasty nausea. Tomorrow morning first thing we are going to Cedars Sinai's ER. Would have gone last night or this morning but we were worried that the specialists I will need wouldn't be around on the weekend.
On April 10th I have an appointment with a whole TEAM of geneticists at Cedars. They'll be getting my Type IV EDS test out of the way along with other evaluations and stuff. I get 2-3 hours with this team minimum.
If you want to donate beyond helping get my set purchased I am taking paypal donations to help cover the cost of the chair and some of my other medical procedures. PM me if you want details. The chair itself is just over $2000.00 so far.
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 that will be up in member review soon as the money from that set will help me afford my chair.
I spent Friday in the ER. My condition (the EDS and POTS) was ignored. The information I gave the doctors was ignored. My explanation that I had already signed a release of information form for the echocardiogram I had last week and that they should get the results was flat out refused. I have had serious POTS symptoms for 5 days, acute heart pain, chronic chest pain, difficulty breathing and pretty nasty nausea. Tomorrow morning first thing we are going to Cedars Sinai's ER. Would have gone last night or this morning but we were worried that the specialists I will need wouldn't be around on the weekend.
On April 10th I have an appointment with a whole TEAM of geneticists at Cedars. They'll be getting my Type IV EDS test out of the way along with other evaluations and stuff. I get 2-3 hours with this team minimum.
If you want to donate beyond helping get my set purchased I am taking paypal donations to help cover the cost of the chair and some of my other medical procedures. PM me if you want details. The chair itself is just over $2000.00 so far.
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I can't believe the doctors treated you like, ugh. Hopefully Cedars will be better.
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.