ByteMe58

Noreen, My wheelchair is made by Drive and it's backrest reclines and the legs lift. I have the tall version because I'm 6'4". It's comfortable and easy to operate. I googled the Tilt in Space models, they look very sturdy and a lot heavier too, but they don't look like they fold together which is something I need to hook into carrier on my trailer hitch. Frank

Wheelchairs are helpful. I refuse to use mine except when I have to wait in line somewhere. Which for me is only at the doctor's office. I only leave the house to go to relatives or doctors. This is important, get one that reclines, I cannot sit too long without my heart rate going over 100, so a regular chair is worthless. I also got a wheelchair lift that connects to the trailer hitch on my Traverse so when my wife takes me someplace, I lay down in the back of the Traverse on an inflatable mattress and the wheelchair is outside and safe. Here's something you may not know, most new cars have a benefit. For example, gmmobility.com reimbursed me in full for purchase and install of wheelchair carrier and the cover. Frank

It's been over a year now since I started blacking out and spent 22 days in the hospital being diagnosed. The longest I can spend out of bed now is about 10 minutes at a time. I'm thankful I can sit at the table to eat now, walk around my house to the living room recliner, take my dogs out, go to the bathroom on my own. Thankful, because I couldn't do these things a year ago. Years ago I had a friend at work who was diagnosed with Hodgkins lymphoma. He was very upset and spoke of suicide. One day, he was sent up on the roof to change the parking lot lightbulbs. I was told he was up there for a long time, so I went up to see him. He was sitting on the edge, so I went over and sat with him. I said what are you doing. He told me in tears that he wanted to jump off, but was trying to figure how to land so that he died, he didn't want to just break some bones or be paralyzed and be worse. I said, you mean you could be worse than you are now? You're telling me that people are paralyzed and fighting for their lives? And you're better than them and want to throw it away? I think it's called tough love, but I tried to get him to understand that you have to make the best of your situation, and it worked and he's still one of my best friends. He has beaten Hodgkins, married and had a beautiful baby daughter this year. So that brings us to today, somedays I feel I have nothing to contribute to this world anymore, I'm a burden on my family, and I can't get out of my own way. But life is too precious to take lightly. Suicide is forever, you're not just throwing away today, you're throwing away the rest of your life. You're going to miss a lot of good times, good days and good people who deserve to still have YOU in their life.

It's almost a year since POTS took over my life. I've been fighting back as hard as I can. I lost my job, had to sell my truck, and lost most of my friends. None of those things matter anymore. I miss my life. Last Sunday was my birthday. I was trying to help setup a backyard BBQ but after about 10 minutes outside I ended up passing out and fell over a chair in the backyard. My wife who has done 110% of everything for me since this started had to pick me up and carry me back to my hospital bed. So I spent my birthday with an ice pack on my ribs, bruises on my elbow, knee and ankle. I won't let it stop me. I refuse to give up and lay in bed all day, every day. I'm willing to take the chance that this will happen again so that I can spend as much time as possible being normal. I quote Rodney Dangerfield from Back to School, Do Not Go Quietly....

I had heard that if you have fainted in the previous 6 months (in NY) that you weren't legally able to drive. I still have my license but haven't driven since the morning I drove to work Sept 14 last year, they took me by ambulance to hospital. My wife drove me 600 miles each way to Dr. Grubb in Toledo while I was laying down on a blowup mattress in the back of our Chevy Traverse. I couldn't even help with the driving. I wouldn't take the chance. Frank

Definitely brain fog is the worst. If I sit too long, my wife says it looks like I'm staring at a spot 2 inches in front of my face. She yells at me "go lay down, go lay down" I just sat there, I thought she was talking to the dog!!! Frank

How about a Total Gym? I love it, you can get a great upper and lower body workout laying down on the bench. And the good part is as you get stronger, you elevate the back and put yourself on more of an angle. I mentioned it to Dr. Grubb last week at my 2nd visit and he said it was a great idea. http://www.amazon.com/Total-Gym-21300-4-18...4888&sr=1-4 Frank

Human, I've been taking it from the start. 10 mg x 3 a day. I just had my first followup appointment with Dr. Grubb last week. He is increasing my mestinon, but leaving midodrine dosage the same. It is supposed to constrict blood vessels, so I imagine you have a blood pooling issue. Do you hands and feet turn red and your veins pop out when standing for a period of time? My hands get red with white spots, then start turning purple, even if I just hang them straight down at my side when sitting for a few minutes. The veins in my feet expand so much, the veins across the top of my feet burn and it becomes painful to stand still. Sound familiar? Frank

Does this bed make me look fat? Frank

I have a reclining wheelchair. It was given to me when I left the hospital. It has been 7 months and I have only used it while at doctor's office waiting rooms and a few times I visited my old job. I am not able to sit up long enough to even go around the block. But someday I will be able to, I can't wait to have that kind of freedom. Frank

I'm curious myself. Out of work for 6 months now at 51 years old. I have progressed to where I can be out of bed for up to 15-20 minutes max. Sometimes only 2 minutes before major blood pooling knocks me down. Still bedridden the rest of the day (or fully reclined laz-y-boy) Reclining wheel chair for waiting in doctors office. No shopping, running to the store, or trip to the park for me. And definitely no driving. How do you work like this? Social Security starts next month for me. Frank

I've had this problem for years. My neck is red most of the time and bright red once in a while. It looks almost like a shaving irritation. But I've tried razors, electrics and nothing at all, but it doesn't have any effect. It's just red. The redness is from my chin down to around adam's apple and from ear to ear. For years people have said 'what's wrong with your neck?' and I always say nothing, but now I'm wondering, maybe it's not my neck. Maybe it's related to my B12 anemia or blood circulating problems from ANS. I'd hate to have to move south of the border just to fit in. Hee Haw, I got my red neck, white socks, and blue ribbon beer!!! Yank , I mean Frank

I've had pernicious anemia since 1990. I was getting a shot every month. While being diagnosed with POTS in hospital, I was told to give myself shots every week. You can't Overdose, you will piss out any extra. Give the shots before bed, you will make new blood while in a deep REM sleep, if you do it during the day, it will wear you out all day.

Scary, I also had epidural injections in L4-L5. I had 3 in 2004 after a car accident and 1 more in 2006 following another car accident, it didn't help and I ended up having microdiscectomy surgery. My POTS symptoms started in 2009. I have read that POTS could be caused by spinal injury.

This is my first summer with POTS, I have been pretty much bedridden for 6 months. I was looking forward to going outside and laying in a lounge chair, reading a book, taking a radio outside. It's almost warm enough now (60 degrees on Long Island this week). I know I always feel hot in the house (thermostat at 70), usually just wear shorts and a tank top, but my feet are always cold. But as far as being outside, how bad is it? Can I lay out in a shady spot? Is it the sunshine or the heat that is the worst. I guess I should get out there now.