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DancingLight

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Everything posted by DancingLight

  1. EM, These surges are such a struggle. Sometimes a benzo helps me and sometimes it makes it worse! Otherwise I tend to just have to wait it out and stay in quiet as much as possible. Pet the dog, listen to quiet music, and just wait. I do the mantras that you do!!!! I say stuff over and over and over again. "Are you okay?" "Yes." Etc. etc. I have had a lot of nights when I am up all night long waiting for it to pass and it is so frustrating. All I can send is hugs b/c if there was an easy answer...you would have figured it out by now! Because you are a good problem solver! em
  2. Originally patients with CFS were not separated into separate groups in terms of autonomic issues. In 1990 (?) a groundbreaking study was done that separated those with CFS into two groups--those with NMH (based on positive TTTs) and those without NMH (negative TTTs). My doctor is a CFS specialist who also deals with a LOT of ANS issues b/c they so often overlap. They are very often co-morbid conditions. Also, lots of us have NMH and POTS together. So, HR shoots up when standing and BP plummets causing us to faint (or have episodes of near-syncope if we are not fainters).
  3. Thank you flop!!! It helps a lot to hear how you manage with a rigid chair and how it fits in your car, etc. I do need to slow the process down. I feel like the dude is great, but also in a hurry to get it taken care of. I want my chair ASAP too, but I want to make a good decision so I can really enjoy it! Time to step back and see what other resources I can pull in and do my research. Speaking of research, I agree with Melissa that the Choosing a Wheelchair book is great. I went on an outing today in the standard chair we got on loan. Even my mom can barely lift it in and out of the car and barely push me in it! It's that heavy. The ultra lightweight is going to feel like a sports car! Emily
  4. EM, The pictures are PRICELESS! They probably don't recommend bare feet either! You really crack me up. Thanks for the specs!!! I can't believe the things we ANS folks do to make things work...it's always reassuring to know there are other folks finding these crazy was to keep blood to the brain! Hope you get a ride tomorrow in the nice weather... em
  5. EM, Hurray!!!!!! I'm so glad you got your new chair so quickly! How tall are you? Just wondering since you have been talking about the seat size--Did you do 16" by 16"? So glad your dog goes for a ride with you...So far Asher is afraid of the loaner chair we have and barks at it. Great, huh?! I have been contemplating the elevated leg rests vs. not...as I know some people have opted for them, and others have not. When you are wheeling yourself are you able to keep your legs elevated? Or just when you are being pushed? I loved being able to cross my legs in the one he brought, but I forgot to check if I could cross them while 'in motion'! Oops! I was not prepared for all of the questions I would need to ask, so I'm just going to need to slow down and figure out what it is that I really need so I can be as happy as you are when it arrives! Color is super important!!!! So glad yours is stylin'! Thanks, from the 'other em'
  6. Thanks Poohbear and Melissa! Pooh--it's good to see your name pop up! Melissa...of course I know there is a method to your madness!!!! The ultra-lightweight is amazing and I can't stop talking about how cool it was to try it out. I am hoping they might have a rigid one for me to look at as well as the folding one he brought yesterday. He didn't have me try stuff like taking the wheels off, folding it up myself etc. Which is really important! So, I called and left a message. I'd rather slow the process a teeny bit to get what I really want than rush it. He's a PT or PTA--I thought he said PT, but then when he said where he went to school, it's only a two year program, so that didn't compute. I just can't really picture it.... I think it's good to note that you pass out soooo quickly upon standing and really need to have that system in place. I'm picturing you crawling to the front seat of the car!
  7. Hello to my fellow DINET wheelchair users: I am just wondering if anyone made the decision between a rigid vs. a folding ultra-lightweight wheelchair. I am looking at the Quickie GT vs. the Quickie 2 Lite. I met with the person from the supplier today and this is the biggest part of my decision. He felt that the rigid would give me more options for mobility, but it presents more difficulty for transport. I wondered if anyone else had decided b/w these two options with OUR conditions....as he had never seen anyone with ANS dysfunction before. I tried the Quickie 2 Lite (Melissa, they are discontinuing your beloved Quickie 2HP!)....and I was AMAZED that it was so, well, 'pushable'. I could not believe it. It made me really excited. Granted, I was on hard wood floors in the house, but wow, what a difference from a standard chair. The rigid chairs are about 5 pounds lighter... Oh, and then colors!!!! Tough, tough decision!!! I know I'm not around much on DINET these days...but I do check in quite frequently to see 'what's happening' with everyone. Thanks for any help you might have! Emily P.S. It still has to go through insurance, but they only have 21 days to decide. He really felt that it would go through given the documentation I have. It seems too easy....it makes me wonder if it will all work out so well. It should take about 6 weeks total from start to finish. Right now, I have a standard VERY bulky chair.
  8. me, totally my bad!!!! i meant to type custom ULTRA lightweight. the letter was written specifically for that. the store said the letter from my doc was fantastic (although it was a bit exaggerated i think!). i'm just going to see how the meeting goes on thursday and go from there to see how things go. but, from what you write, these folks can know a LOT about this stuff. probably more than i am going to find for a pt locally. but we'll see. i'm leaving my doors open. and your tips were super helpful (as always) to help me know what i'm doing. EM, i guessed it would be the deep purple...a bit more zen than the electric purple!
  9. EM, What a bummer about your insurance. That is really, really frustrating. I'm glad you were able to get something for yourself to use, as I know it has given you more freedom. Did you get the Electric purple or the Deep purple?! I am meeting with a person who is certified to help people choose wheelchairs next week. He works for the store, but all he does is wheelchair stuff, so I hope he will know what he is doing. I've been told he's excellent. I assume that it means I got approved by MA for the custom lightweight or else they wouldn't have met with me...as they wait until the insurance goes through. I was so caught off gaurd that he called so quickly to schedule I forgot to ask about the insurance, but I'm assuming since it wouldn't be worth their time otherwise! And that is what they had told me previously as to how things work. It happened so much faster than I thought it would. They are going to bring one for me to use in the meantime while I wait for the custom one. It just doesn't make sense to me and it frustrates me that some of us have trouble getting one covered and some of us don't. It's such a tool for living life. BTW, how many of you also worked with a PT or OT to choose your wheelchair and/or learn to use it??? I am wondering if I need to do that in addition to working with the guy from the store? Or will his knowledge of the custom chairs be enough to choose the right one based on my needs? Thanks! Emily
  10. i'm stalking you again! haha. if someone else reads this they are going to think it's crazy, but you'll know what i mean! :)

  11. heya me, that is not a belated reply! good grief! so far i have just mailed my Rx to the store! i'm so scared about the MA part of things more than anything. what you wrote and what others have written in this thread is invaluable. really. i did already buy the book the other day. i figured surely for $4 total (with the shipping) it had to have something useful in it! i really wondered about the people who push themselves and who do not. and the ultra-lightweight issue, as i know that is the kind of chair you have. that was also the type my doctor recommended for me....but just a different brand than yours. the higher back and having someone else be able to push=important to me too. the elevated leg rests would be great, but if you can actually get yourself seated indian style in your chair (which is what i was wondering) than i'd rather do that anyways. we had our first big outing today using a wheelchair, oh wait, second. but this was bigger. went to the mall. and okay, that wasn't the greatest first choice as the overstimulation has my ans going crazy. but i did get to pick out my own clothes. i tried to 'drive' myself in that thing and thought omg i'm heavy to push! but now that i read your post, it helps me to know that might not be so much the case in a lighter chair. my mom is a speedy driver and i also felt like i was still moving afterwards, as michelle mentioned. it will take my ans some getting used to. the outing was okay emotionally actually after getting the support i've gotten. the tips here are so helpful and i feel so much more armed with info. and so ready to do this. thank you thank you thank you!!!!!!!!!! em
  12. flop... do you have the link to your thread that you started? i did a search originally before i started posting and had a really difficult time finding the relevant posts i wanted... thanks! emily
  13. EM--that was funny about doctors treating wheelchairs like a controlled substance. it makes me sad, really, that they don't want people out in the world rather than sitting at home, isolated. and doubt our motivation to be healthy and be part of the world. i luckily didn't have that experience upon my first request for a chair, and if i did i might have backed down since it was so hard to ask to begin with. now, my hope is that insurance will cover it....now that i've started sort of looking forward and taking such comfort from all of the posts here. Flop--oeuf to your doc too. i'm glad you mentioned the arms being up high enough for someone to push...i hadn't though about that, as i foresee being pushed fairly often...and maybe progressing to being able to self-propel more. i've been away for a long time and it's so nice to see so many familiar faces still here and so many fresh faces. and thank goodness for the archives!
  14. Thank you to those of you who added input--mkoven and EM--reading what you and Melissa and Corina wrote about being able to do more things, etc. really, really, really helps me. I know this is a big step towards being able to do more. I like the term 'wheelchair embarrassment' that Melissa coined. It's perfect! So many of the feelings you have all had are the same ones I am going through. I just got my Rx in the mail and sent it off to the place that will be doing the fitting, etc. I was wondering how many people were able to wheel themselves manually without assistance and it sounds like it is a mix. This is an invaluable thread... Emily
  15. Melissa, Would you still recommend the Choosing a Wheelchair book even though it is pretty old? I found it on amazon.com for a penny! Em
  16. I just started midodrine a few months ago... I've had to do a LOT of tweaking, starting at 2.5 mg 3x a day. My dosing schedule is based on my sleep/wake schedule. I take my first dose before I get out of bed. I am now up to 12.5 mg for the first dose of the day, and working up to that dose for the other times. I take midodrine four times a day. If it's not in my system when I try to go to sleep, my bp crashes and I can't sleep. Sometimes I still have to take it in the middle of the night to stop a 'spell' and get my bp up enough to sleep. I've had to go back and forth with my doctor a LOT to figure out dosing that works for me...
  17. This is such a fantastic post...very helpful for me as I make this big decision!
  18. K, I have been so out of the loop, I haven't been on the forum for ages... I just saw this and it made my day for you and Miss G! She's so great and creative and I love that! Emily
  19. Happy Birthday Melissa! You are an INCREDIBLE blessing to so many people here on this board and you give so much despite all of your personal health struggles. It's really amazing and admirable. You give others such strength, support and inspiration even through your suffering. I think birthdays are about celebrating YOU, and here on DINET we celebrate you for many reasons. Today I want to honor what you do here. I also hope so much that you will get to be set 'free' from l'hopital today....but if not, I know you are at a bit of peace about it all, and mostly want for you to be home and feeling as well as possible and free able to have a line in for the Christmas holiday and season, as I know that is what means the most to you. I know this isn't the most fun of bdays, but I do want to tell you how much you are loved. I also hope they have a good treat for you to have tomorrow--is there a Rita's nearby!? Love, Emily
  20. hey me! so glad i checked in and saw your update!!!! i really, really hope that you don't have to have surgery ON your birthday... thanks for keeping us posted on where things are at and we'll try our best not to worry and use that worry energy to instead send good thoughts! no facebook eh? are you going through withdrawal? okay, back to resting for me....but wanted to pop in and say hi and let you know you are in my thoughts continuously and we'll all keep checking for updates! love you, and early birthday wishes in case you are actually completely zonked out on the day OF your bday.... i'm grateful for teh care you are getting there....big relief... love you, em
  21. Lisa, I don't know much about this at all...but have you also tried your County Assistance Office? For instance, I didn't work long enough before I got sick to qualify for SSDI or Medicare. After I could no longer COBRA off of my parents insurance I was able to get Medicaid, even though I had not yet applied for SSI benefits. Medical Assistance is need-based, but I don't know how it works with children...probably has to do with household income/poverty level, number of ppl in the household, etc. It gets confusing b/c the Federal and State and County aid programs all vary. There are often special programs specifically for children. Hope this helps... Emily
  22. Thank you all for the birthday wishes. I admit I wasn't much looking forward to my birthday...and I wasn't feeling like life was quite how I'd hoped it would be at age 33 (but, gosh I'm trying to bloom where I'm planted!)... Anyways, I ended up having a most WONDERFUL birthday full of the most amazing suprises....wow. Thank you for thinking of me on my day, Emily
  23. Happy Birthday to you! Happy Birthday to you! Happy Birthday dear Corina! Happy Birthday to YOOOOUUUUU!!!!! Aaaaah, yes it's my beautiful singing for you all the way sent from PA to the Netherlands! Good thing it's only via the internet or you'd have a headache. Corina, corina, corina....what to say? You are one of the dearest, kindest, sweetest, most thoughtful people with a spirit that shines so brightly despite all that you go through. You support others year after year, day after day, offering always, kindness and wisdom. Thank you and may you have a very happy birthday. Love, Emily
  24. Waiting for another round of tests for something else sounds pretty nerve-wracking.... But right now, YEAH and big relief that you do not have VEDS. Emily
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