BBS sent me a private message, and updated me on her health status.
she is much worse unfortunately! some of you might remember she went to denver 4-8 weeks ago to experts since the east coast wasn't able to help her.
it was a 3 day trip out and 3 days back plus 4-5 days there if my lyme mind is correct.
lyme expert was of no help, but another doc helped her so it wasn't completely wasted trip.
her legs remain still so swollen and no one has found anything to help her.
after an appt. lately, she briefly went xmas shopping. she asked for a chair to sit down, and clerk was giving her crap. she stood her ground saying how sick she was, and about her passing out; they'd better get her the chair.
also a clerk gave her a bad time about not carrying packages since her mom was carrying them. again she stood her ground, and mom chimed in as well.
grocery clerk made fun of her not carrying packages; mom explained, and he still was very nasty. she said she's writing hq about this nasty employee.
so please put bbs in your thoughts and prayers since she's only 21 or 22. she had a very promising acting/singing professional career that is on permanent hold since she is bedridden!
shopping was 1st time in about a year to be out for NORMAL outing.
thanks to all you lymies out there helping bbs over the hump, and the fear of the unknown that happens to each of us here! god bless you all. Posted by char (Member # 8315) on :
Man, people are just unbelievable sometimes. Where is the Christmas spirit? Those clerks must be really overworked!
I will be praying for our blackbird.
I agree it is especially a shame for young people to be so sick.
Thank you for the update-I have been worried about her.
Char
Posted by hiker53 (Member # 6046) on :
She gets a special prayer today! Hiker
Posted by bettyg (Member # 6147) on :
thanks ladies!
char, it goes back to, "but you look well" on the outside! cheesh!
many more prayers needed for bbs! lets see support from everyone please! thank you!
she's been going thru life and death situations the last 6+ months; lets show her what this SUPPORT board forum is about; shall we? Posted by trails (Member # 1620) on :
i am thinking of her now an hoping she gets some relief!
I thought she got a new diagnosis? but that the treatment was as bad as lyme or worse. any news on how she can be treated? please correct me if i am wrong.
Posted by AZURE WISH (Member # 804) on :
She s in my prayers...
And sending tons of healing thoughts her way
That clerk was awful. I have never had an expereince like that.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by AZURE WISH: That clerk was awful. I have never had an experience like that.
Pretty dispicable!!
Ask BBS if she has tried Anadyne therapy for the swollen legs?? I know someone with Lyme that got help with it.
Prayers headed UP!
Posted by leogrl54 (Member # 10770) on :
my prayers are with her.
i've had the "you don't look sick" so many times.
just know we all understand. Posted by MagicAcorn (Member # 8786) on :
BBS - We miss you on chat. Feel better soon. Try and enjoy the holidays a little bit.
Posted by bettyg (Member # 6147) on :
ladies, i'll copy this thread and send privately to her to read as she feels up to it.
she can update me and we'll try to answer your questions above ok; my memory is so poor that i'd blow it.
i know she's tried every conceivable thing anyone has thought up.
thanks gang for joining in and remembering one of our special members during her time of need! God bless you all. Posted by Andie333 (Member # 7370) on :
Let her know she's in my thoughts and prayers, too.
And, thanks, Betty, for keeping us updated~
Andie
Posted by just don (Member # 1129) on :
Prayers sent for BlackBirdSings great recovery and trip back to wellness.
And a prayer for forgiveness for the clerks, etc. These arent the 'ONLY' ones who are in the DONT KNOW category!!!IB--just don--
Posted by 5dana8 (Member # 7935) on :
you are in my prayers
Blackbird Posted by pq (Member # 6886) on :
prayer sent for BBS
BBS if your reading this. file a complaint against the employee(s).
Posted by bettyg (Member # 6147) on :
"Hi Betty,
Please thank everybody for the prayers and kind messages :-) I slept literally ALL day and feel like I was run over by a paving truck-ugghhhh... Not fun! I have a doctors appointment towards the end of the week. If it goes well, I should be able to get the medicine I need to get rid of the swelling. Just hope and pray I don't get another doozie doctor.
I will try to put a post up after the appointment and let everybody know what is going on.
Oh, I forgot...you can tell them that I have hereditary angioedema.
we are going through a process to figure out for sure which type I have.
I was in Denver for about two weeks. It took four days to get there and about three to get back. Loooong trip!
Gonna go get some more rest...Thank everybody on the forum for me please :-) Such heart warming messages :-) "
blackbirdsings
thanks bbs for your emails you sent me on updates for all of our wonderful lymenet buddies above!
we'll all look forward to your post towards end of week after you've seen another new md yet!
thoughts/prayers continue to head your way from iowa to you on east coast! Posted by bettyg (Member # 6147) on :
thinking of you today BBS, and hoping today is better than when we last visited!
take care my friend... Posted by hopeful123 (Member # 3244) on :
Posted by hopeful123 (Member # 3244) on :
Posted by trails (Member # 1620) on :
sleeping all day is good for you! take care, Posted by blackbirdsings (Member # 7972) on :
Many thanks to everybody for the support and prayers :-).
I have been sleeping lots and lots and not doing too much for days. I get some IV fluids later this week which should help me feel better for Christmas.
We have to wait another week for blood work to come back. We are trying to confirm a diagnosis. If it doesn't prove I have it, something else is causing the edema and hopefully the bloodwork will tell us the direction to go in.
So we are just waiting and going about this as systimatically as possible. There are a few plans in place on what to do if the bloodwork does or doesn't show stuff.
I may get fresh frozen plasma at some point to see if it helps, but at this point we are waiting to do that.
I may have forgotten to add something in, but at least I got a post up here. I am off to get some more rest.
Hope everybody is doing well and wish you all a Happy Holiday Season!!
Posted by Melanie Reber (Member # 3707) on :
Hey there sweet Blackbird,
Keeping you in my thoughts and prayers for some answers and relief very soon!
![[Frown]](frown.gif)
I have never had an experience like that. ![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
![[sleepy]](graemlins/sleepy.gif)