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gosteelers68

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  1. An aftermarket seat would be great. I just haven't found any yet that address circulation issues sufficiently for me. Do you recall where you got the seat for your van? I don't know if it's true, but, I've been told that the manufacturers don't recommend aftermarket seats in autos because the air bags and other safety technology are set to work in conjunction with the seats now, so, putting in a different seat could cause the air bag to explode in the wrong position, etc. But . . . if there's an after-market seat option out there, I'd definitely want to explore it. Thanks for the help, Wendi
  2. My hands (and feet) are usually ice cold, but, when things are about to flare up, I often get very over heated (including my hands). FYI-I am not on any beta blockers currently so that isn't a factor with me.
  3. Dear Gena, Thank you for the tip about the homep. seat cushion. I'll definitely look into that. Also, fyi, I've copied the information I received via email from Volvo below. I wish it were more specific. I do know that I stumbled into the benefits of the Volvo seat when I downgraded my old car to the used Volvo in 2000. I was just looking for a cheaper car without payments but as soon as I started to drive it regularly, it became clear that my symptoms were less in that car than in the Honda my former husband was driving. It wasn't until I started looking for a replacement vehicle this year that I started to research seat options and attempted to learn more about the Volvo seat. Here are the emails from Volvo: From : VolvoCustomerService, Volvo (.) <volvocus@volvocars.com> Sent : Friday, September 17, 2004 4:31 PM To : XXXXXXX Subject : RE: Please Help--Volvo's Orthopaedic-designed Seats Dear Ms. XXXXXX, Thank you for contacting Volvo. The seats in our vehicles are made of a tubular steel frame providing a rigid seat backbone. The seating are itself is supported with strong, flexible wires called pullamflex that are attached to the frame by helical coils. The pullmaflex ensures that seat cushions and backrests retain their shape for many years. The helical springs provide the correct flexibility for the seat to respond to body movements while limiting body bounce. Over the pullmaflex webbing, dense cold-formed polyurethane foam with a buit-in reinforcement is used to build up a firm and flexible seat cushion and backrest. The seat cushion is designed to provide proper thigh support without restricting blood flow. The backrest is deeply contoured for excellent lateral support of the upper body. The lumbar support is adjusted by varying the tension in the pullmaflex wires over a metal plate. This helps relieve back tension and reduce driver fatigue. We hope this information has been helpful. Drive Safely, John Willets Volvo Cars of North America From : New, Volvo (.) <newvolvo@volvocars.com> Sent : Friday, October 22, 2004 5:26 PM To : XXXXXXXXX Subject : RE: 1.Please Help--Volvo's Orthopaedic-designed Seats Dear XXXXX, Thank you for contacting Volvo. Unfortunately we do not have any comparison data, or data on our seats. I hope the following helps. The orthopedically designed seats were designed to enhance comfort and reduce fatigue. They provide thigh support without restricting blood flow. They feature a comprehensive system of contoured support tailored to the individual. Seat adjustment controls are large and easily accessible. The power driver's seat features eight way power adjustments. The seat also has a memory function. Volvo is considered by many to have the best seats in the auto industry. Best Regards, Jim Kossove Volvo Personal Shopper
  4. I think you were very brave to hide behind a pillar. At 9 months of diagnosis, I still hid inside my home. At 2 years, I hadn't progressed much further. Then, I participated in an 11-week group for terminal and chronic illness. At the first meeting, we each had to explain a little about our situation to the group. That was the first time I ever said out loud what was wrong with me to others. The group setting along with making other new friends--who only know me in my current state and therefore like me as I am-- help me to accept the challenges POTS/NMH presents daily. Another thing that helped was developing new interests or finding ways to participate, to the extent possible (when possible) in old activities. So, that having been said . . . here are my sort of standard answers (I'm not suggesting that these answers are right for you, just after a few years of practice, here's the approach I take now) when running into someone I haven't seen in a while: Q from acquaintance: How are you doing? A: Great. And you? (I find many people just really want to tell me how they are doing anyway, so, if they don't get back to asking me any questions, I just let them go on. And, I keep my medical situation to myself.) Q: I haven't seen you in a while. Are you working somewhere? A: No. Now, I am a lady of leisure. Really, I've had some health issues come up that are taking a front seat, but, on the plus side, it's really helped to put things into focus for me/prioritize the really important things in my life. Q: What is your illness? A: It has a lot of consonants. Would you like to buy a vowel? Just kidding, the good news is that it's not contagious or anything. (Then, if they really want to know, I give them the full diagnosis. But, by then, I usually can't stand or sit any longer, so, I'm sure to explain to them that my condition affects my circulation and I need to walk around a bit--then, I ask them if they would like to walk with me.) Then, I turn the conversation back to finding out more about what's going on in their life, just as I would have done before my illness. If they really care to follow up with me more about it later, they will. And, if they seem genuinely interested, I'll propose that we get together sometime (explaining that I don't always know if I'll be able to make it until the time arrives--but, I might also say "but, look at me today, here I am shopping & I'm so thrilled we've had a chance to catch up today.") Alternatively, I share something else (non-medical-related) that is going on in my life--like a good book I've read, movie, etc. (if I run into someone when I've been too sick to read a good book, see a movie, etc., then I ask them about something I've wanted to see or read. But, that's just me--I find it interesting to hear other people's perspectives on things that I might not be able to directly participate in.) The most important thing for me when socializing is to remember that my diagnosis is just one part pf me, it does not define who I am. The more naturally I correspond with people, I've found the more likely they are to include me (with my many limitations) in the fun things they do. The awkward situation of addressing my illness also comes up in dating. Boy, do I have more than my fair share of embarrasing dating stories. But, that's for another day--I also suffer from Raynaud's & so typing isn't good for me--I guess I'll work on being more succint next time! Hold your head high. You sound like a very accomplished and talented person. I am very sorry that you are having to deal with this illness. --Wendi
  5. Does anyone know of an automobile seat that helps to maximize driver circulation? I've found a lot of optons for orthopaedic support, but, only one (rather expensive) manufacturer that has addressed circulatory fatigue. BACKGROUND: I have severe POTS/NMH (likely due to hereditary joint hypermobility). Consequently, I cannot sit for very long & my driving is quite limited. By accident, I discovered that Volvo makes car seats that are specifically-designed to reduce circulatory fatigue. (Volvo provided me with some info. that confirmed my experience with their seat.) I'm able to drive in a Volvo seat about 4 times longer than in other seats (I've driven Toyota, Mazda, Honda, Isuzu and Chevrolet models to no avail). Unfortunately, my 1994 Volvo appears to have reached the end of its lifespan--unless I somehow find a way to infuse another $1700 for repairs. As a disabled, single Mother of two young children, ideally, I'd like to find a replacement vehicle more suited to my limited driving and budget. This week seems like an ideal time to make a good deal on a car. Any suggestions? I'd love to hear from anyone who is willing to share tips for car seats, accessories, etc. that they have found helpful for driving. Much Thanks, Wendi
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