Boost the signal!
Aug. 18th, 2013 04:48 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
kukla_tkoI'm boosting the signal for ![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
ashbet, a lovely artist who is experiencing some serious difficulties. She herself has a debilitating disease, and her daugher has just been diagnosed with heart problems. A friend of hers is helping to raise funds for her daughter's treatment. Below is the text of her post:
abigor is selling some of her beautiful handmade jewelry to benefit Kira, with all funds to go towards her medical bills.
We are incredibly grateful for her help -- and we'd love it if this link got spread far and wide.
http://www.flickr.com/photos/abigor/sets/72157634994122304/
She said that her necklaces are usually around $45, bracelets are around $30, but please contact her (abigor@gmail.com) to ask about a specific piece. (Flickr won't let you post prices, but it's the quickest way to get the photos grouped and easily-viewable.)
* * *
Feel free to skip this if you know us, but since I'm making this public and hoping it gets reposted, a little background information -- my 20-year-old daughter, Kira, and I have a genetic disorder called Ehlers-Danlos Syndrome. I am disabled by it. She has been struggling with increasing physical challenges, but has fought hard to remain in school and has been getting A's and B's in college.
Unfortunately, her existing cardiac problems have gone downhill -- she unexpectedly developed cardiomyopathy (damage to her heart muscle), which is apparently a very low probability for someone her age and with her set of conditions. We're currently struggling with a Catch-22 -- her heart rate is high (105), but her BP is low, and it's been dropping to numbers like 83/48, which makes it very difficult for her to function. Her cardiologist feels that it is crucial to get her heart rate down, even if it means accepting significant side effects, so he has started her on beta blockers, even though they lower blood pressure.
We had hoped that at her appointment on August 8, we'd hear that she was ready to start on Midodrine, a drug to raise and stabilize her BP, but her heart rate is still too high, so it would be dangerous. We're waiting two weeks on the current dosage of beta-blockers and then trying again, in hopes that her body can adjust and not be having wild fluctuations in blood pressure.
She's supposed to be going back to school on August 24, but we're holding off on making a final decision until we see whether she's safe to start the Midodrine and can adjust to *that* new set of side effects -- her heart is much more important than a semester of school, although it would mean missing out on a unique opportunity (a research project that she's put a lot of work into, and was going to be presenting at the National Conference of Undergraduate Researchers in the spring -- but only if she finished it.) She does have a cardiologist in Ithaca ready to treat her when she arrives.
With that said, there's no point in sending her back to school if she'll be too sick to function -- so she, and we, will make that decision pretty much up to the wire. We're buying her a refundable plane ticket this time, just in case.
Any help you can give (we're accepting PayPal donations to ashbet@gmail.com, I've also been making sales, although most of my possessions of value are BJD-related, so they're a bit of a niche interest) would be deeply appreciated, even if it's just boosting the signal.
We hate to ask for help, but the kind of intensive cardiac monitoring she's going to need, and the expenses for all the testing she's had so far, are vastly outside our budget. We're trying to get some help for her through SSDI, but the process is incredibly slow, and in my experience, they aren't used to dealing with rare diseases/genetic disorders (EDS is a connective-tissue disorder) that don't fit into neat pigeonholes -- and we live in Texas, so one SSDI check for two sick people is still considered to be too much to qualify for assistance.
Thanks so much for reading and signal-boosting, and I hope that abigor's beautiful work will appeal to some of you -- and check out the rest of her Flickr gallery while you're at it, she makes wonderfully-covetable pieces!
Love to all,
-- Andi and Kira<3
P.S. For those on Tumblr, I just made a post, and reshares would be much appreciated!
http://ashbet.tumblr.com/post/58129989375/the-incomparable-laura-has-offered-up-several
ashbet, a lovely artist who is experiencing some serious difficulties. She herself has a debilitating disease, and her daugher has just been diagnosed with heart problems. A friend of hers is helping to raise funds for her daughter's treatment. Below is the text of her post:abigor is selling some of her beautiful handmade jewelry to benefit Kira, with all funds to go towards her medical bills. We are incredibly grateful for her help -- and we'd love it if this link got spread far and wide.
http://www.flickr.com/photos/abigor/sets/72157634994122304/
She said that her necklaces are usually around $45, bracelets are around $30, but please contact her (abigor@gmail.com) to ask about a specific piece. (Flickr won't let you post prices, but it's the quickest way to get the photos grouped and easily-viewable.)
* * *
Feel free to skip this if you know us, but since I'm making this public and hoping it gets reposted, a little background information -- my 20-year-old daughter, Kira, and I have a genetic disorder called Ehlers-Danlos Syndrome. I am disabled by it. She has been struggling with increasing physical challenges, but has fought hard to remain in school and has been getting A's and B's in college.
Unfortunately, her existing cardiac problems have gone downhill -- she unexpectedly developed cardiomyopathy (damage to her heart muscle), which is apparently a very low probability for someone her age and with her set of conditions. We're currently struggling with a Catch-22 -- her heart rate is high (105), but her BP is low, and it's been dropping to numbers like 83/48, which makes it very difficult for her to function. Her cardiologist feels that it is crucial to get her heart rate down, even if it means accepting significant side effects, so he has started her on beta blockers, even though they lower blood pressure.
We had hoped that at her appointment on August 8, we'd hear that she was ready to start on Midodrine, a drug to raise and stabilize her BP, but her heart rate is still too high, so it would be dangerous. We're waiting two weeks on the current dosage of beta-blockers and then trying again, in hopes that her body can adjust and not be having wild fluctuations in blood pressure.
She's supposed to be going back to school on August 24, but we're holding off on making a final decision until we see whether she's safe to start the Midodrine and can adjust to *that* new set of side effects -- her heart is much more important than a semester of school, although it would mean missing out on a unique opportunity (a research project that she's put a lot of work into, and was going to be presenting at the National Conference of Undergraduate Researchers in the spring -- but only if she finished it.) She does have a cardiologist in Ithaca ready to treat her when she arrives.
With that said, there's no point in sending her back to school if she'll be too sick to function -- so she, and we, will make that decision pretty much up to the wire. We're buying her a refundable plane ticket this time, just in case.
Any help you can give (we're accepting PayPal donations to ashbet@gmail.com, I've also been making sales, although most of my possessions of value are BJD-related, so they're a bit of a niche interest) would be deeply appreciated, even if it's just boosting the signal.
We hate to ask for help, but the kind of intensive cardiac monitoring she's going to need, and the expenses for all the testing she's had so far, are vastly outside our budget. We're trying to get some help for her through SSDI, but the process is incredibly slow, and in my experience, they aren't used to dealing with rare diseases/genetic disorders (EDS is a connective-tissue disorder) that don't fit into neat pigeonholes -- and we live in Texas, so one SSDI check for two sick people is still considered to be too much to qualify for assistance.
Thanks so much for reading and signal-boosting, and I hope that abigor's beautiful work will appeal to some of you -- and check out the rest of her Flickr gallery while you're at it, she makes wonderfully-covetable pieces!
Love to all,
-- Andi and Kira<3
P.S. For those on Tumblr, I just made a post, and reshares would be much appreciated!
http://ashbet.tumblr.com/post/58129989375/the-incomparable-laura-has-offered-up-several
