purplefocus

About the Stacker 2. I can't see where any doctor would recommend them for anyone. They have taking them off the shelves here in Alabama. A couple of years ago when I was working prior to POTS I did take these occasionally and it would soar my heart rate up so high, I couldn't imagine it now. I had a bad experience with them. Be really careful. Paige

I'm glad you brought this up. I am in my life long best friends wedding that is soon. I too am fearful of the heat. I don't want to ruin her day in any way. We have discussed the what if's. I know most of the time when I am going to pass out but I occasionaly have times where I don't. The heat here in Alabama gets untolerable. She suggested I use a wheelchair, now come on, you know that isn't gonna happen. I feel torn. I really don't want to even do it now because I am afraid something will happen. What if I get up that day and it is one of my days where I have brain fog so bad I dont' remember stuff let alone the steps of a wedding. I love her dearly and would never want to hurt her but I don't know what to do. Any advice? Paige

Great Sue, I'm glad ya are gonna get to do something and your sis will be with you. Talking with you primary physcian is a good thing. Have fun on your trip. Paige

Sue, I am so sorry you are feeling bad but remember the good days are coming. About your trip, this is what I decide to do on our vacation that is coming up in a couple of weeks. My husband and I talked about this. If I have bad days and have bad spells then I will just stay in the hotel room and lay down and watch cable while he takes the kids out. He really doesn't like the idea but he agreed after I explained I wasn't gonna let this rob us of everything. Who knows tomorrow you could wake up feeling wonderful. That is just what I am gonna do, I don't know if it would be feasible for you. To me just riding in the car getting to see a change of scenery even if I feel bad makes me feel a little better. I know this is frustrating. I feel like sometime I am hanging on by a thread as far as my nerves. I even had a few really bad thoughts but I realized I was and got immediate help. Just hang on Sue maybe tomorrow will be better. I wish I was a fairy Godmother, I would start swirling my wand so we all would be healthy. Paige

I thought I would come on here and say that it is a beautiful day here in Alabama. I feel very good today, no brain fog, very little pain, hardly no symptoms at all. I have enjoyed my 2 sons very much today, although they wear me out. I think I played with soft dart guns for 2 hours straight and I was the target . My kids are 2 and 12. I am waiting on my husband to get home from work so we can go shopping.........YEA. I have played with them, cooked for them and helped my oldest repair a couch. That is more than I have done in a long time. I hope you guys are having a good day. I would like to hear about them. Paige

Deb, You are right, it doesn't make sense. I can feel great for about 3 days then wham it hits me and I am useless for about 2 to 3 days. I don't do anything different or take different medicine but my body certain behaves differently on about a every 3 day rate. I have noticed that when it is time for my period my symptoms do get worse. Have you experienced that? Paige

Deb, I have the same problems also. Not only do I have the pooling when I am standing but when I am sitting also if my legs are not propped up. I have also noticed that I have to shave less often and I have areas on my legs that I have no hair. I also have the shortness of breath. I don't know why this is happening. I had a nerve test done on my legs but if I remember correctly my doctor said it didn't show anything, it may been because I couldn't tolerate it very long. Some days just simply talking too long on the phone I start to get short of breath. I just chalk it up to another POTS symptom. Paige

Hey Nina, I went in and saw your garden. The flowers was gorgeous. The purple ones was very lovely, what are they called. I have some new flowers this year called Grape Coolers. Paige

Tearose, I understand about the "energy points". Moving was a wonderful idea. I know I can't go up any stairs, I couldn't imagine living with them in my house. We all have to make changes in our life and for us the dysautonomia presses the issue for us. Let me tell you something my sister told me a few days ago. She told me to think of this as away to slow you down, she told me that I never would have done so on my own and by getting this I have had the chance to stay home with my 2 year old where otherwise he would be in daycare and I would have been missing out on all the little things he does. She has a point, I guess if we can see the good in all the bad it will help. Still though, hmmmp, I want to be normal. Oh and Tearose, how did you find the energy to move or did you just supervise?

Danelle, I too am a nurse. I tried to work after being diagnosed and lasted for 6 months barely. My coworkers were wonderful it was the higher management that didn't understand. At first I got help from other nurses and was able to take frequent breaks but then I started passing out at work and one morning I actually passed out in a patients room. Well needless to say I became a huge risk management problem. Also, I started worrying about putting my patients in danger when I had brain fog, when things I had done for 15 years now wasn't quite clear to me. They asked me to resign so they wouldn't have to terminate me. I opted to take a medical leave in hopes I could return but things haven't gotten better and my doctor encouraged me to file for disability. I did that in March of 2004 and I just sent in my second set of questions and answer forms that the SSDI has asked for. I was severly depressed and my doctor put me on medication for this, it is helping but what has helped most is the fact I am making myself come to terms with I may never be as I was before so I have to develope the new me into a functioning and coping woman. I have 2 children and a husband, my youngest is only 2. You have to find your place with this and try not to get too lost in the depression. If you aren't already on something maybe you should ask for something to just get you thru for awhile at least. Everyone on here is great and you can always find someone here that will try to help you get thru whatever you are experiencing. Sorry about the rambling. I just know where you are and want to help that hurt some. Paige

Sue, I would love to know also what the water therapy is. I'd love to go swimming, hmmm I might even get a bikini. HaHa! I hope you are feeling better. I also have the weight gain and I am considering the weight loss surgery, my doctor told me we would talk about it in a couple of months and that the surgeon would have the last word. Do your legs feel swollen? My legs are so achy when I get up in the morning, and then when I am sitting down they start feeling like they are swelling up like a balloon. Oh the joy we have.

I'm gonna mail my "20 page letter with questions" to the SSDI in the morning. Do ya think I should include a copy of the information that futurehope gave a link too. The information was very informative. What do you guys think? Paige

Dawn , Please let us know where you got the information. Everyone else............the questions in the letter was insane, like I said ask about television, and if I read or listened to music and if I did how long and what type, it makes me feel crazy. I received another letter yesterday with them asking me for personal reference, one family, one friend and one coworker that is aware of the problems I have. I will send it all in and just wait. Maybe I should move to another country..............just kidding. Ya all are great. Paige

Wow with everything you have had to endure you could never be considered a wimp. I wished there was a cure for us but until they find one we have to really take care of ourselves ............not just what the doctors do. On here you can find out things that help a bit that are not medicinal. We also are good at listening. Paige

Hi Lori, I'm glad you found this forum. Everyone on here is so wonderful at helping you thru those bad days. Hopefully your doctors will find the right medicine dosages for you and you can go without many bad days. Remember it is not all in your head and you aren't crazy, that this is real and many people have this. I said that because there is people that sometimes tell me "you look so good, now what is wrong with you?" I am still dealing with the depression but it is much better. Time does have a way of helping. Stay in contact with this forum on a regular rate and it will help. Also this site is good for researching any of the symptoms that are happening to you. There is always someone here that has already been thru it and can give you hope. Paige

Jackie, The whole system is WACKY. I received a letter from the SSDI yesterday. It was about 10 pages of questions, they range from anywhere about can I do my personal things like bathing to what type of television shows and watch and how long. I am gonna feel it out today and send it back. It's insane but hey maybe I am too, at least they are making me feel that way. Paige

Does anyone know how long it should be before I recieve any information on COBRA. I haven't received the "packet" my ex employer said I would. I have a doctors appt. next week. What do I do? Paige

Sue, I have never heard of it but if it works it is worth all of us trying. I recieved the phamplet, thank you so much. Paige

MeToo, Thank you for responding. I feel better knowing I am not alone. I really feel foolish sometimes because I feel so good and them wham it hits me. My sister ask me if I was gonna put that on my job application that I might can work one week and not another............she was just trying to make me understand I need to be off right now. Another thing is alot of people say....."you look good, now what is wrong with you". It is the same thing we all go thru I guess it was just my time to vent. I think I am gonna go and get me a pillow and draw a family of SSDI people on it and attack the pillow. Maybe that will make me feel better.

I receieved a call this morning from one of the workers at the Social Security office that is working on my disability claim. This woman made me so mad!!!!!!!!!!!!!! She said, oh I see, you get tired easily and faint. Then she continued on with there definintion of what qualifies you for disability. I told her that is was more than what she was saying and that they have all the information, then she said "I see you take Wellbutrin, do you have a mental problem?" I ask her wouldn't she be depressed if she suddenly had a complete horrible lifestyle change. I ask her if I was being denied she told me she couldn't tell me that on the phone that I would be receiveing some papers in the mail in the next few days and I need to return them to her in 10 days. ARGH, what do you do. My doctor tells me I can't drive or work that it is too dangerous, my boss where I was working wouldn't allow me to stay on, the administrator told me I was a risk to them...................Geeeez...........I need to have something to make me get all this anger out of me. I know some of you all have been approved for disability, how did you get thru it? Paige

I received a letter today that I had reached my maximum limit for leave of absence. I have been off since the middle of Feburary. It stated that as of 5/12/04 my medical insurance will be terminated and I will elgible for COBRA and that a packet should be sent to me shortly. Well does this mean I know longer have medical insurance. I went to the doctor on the 14th and well I was unaware of the terminated insurance. AAAAAAAAAARG!!!!!!!!!! I have no clue how COBRA works or the cost, I do know I just paid an insurance premium a little over a week ago, so much for that. Has any of you guys just survived by no doctor visits. When ever your symptoms got bad you just lived thru them? I am so frustrated. Paige

Wow April, I am so curious to see what happens here. I just don't have the energy to do anything about my situation. I loved being a nurse and the fact that they just kicked me to the curb has stressed me to the max. Hopefully my energy will return and I can fight. In the mean time keep us updated. Paige

Sue, I am so glad you are home and feeling better. I am very thankful for people like you. We all learn from one another on here. No matter what we are going thru it seems like we can find someone else that has been thru it before and are on the upside and that gives us alot of encouragement. Happy Mothers Day to you and all and I bet that microphone is great. Paige

I wake up every morning with both my lower legs aching so bad and it takes a few minutes before I can even stand up on them and after I start walking it seems to start feeling a little better. I still have pain in my lower legs all day. I am on neurotin and it does help. Does anyone else have this when waking up? I received the notification of the newsletter. Paige

April, I had a horrible time at work where they told me I had to resign or they would fire me due to all the absences. I refused to quit and I went on medical leave which I am still on and have applied for disability. Actually during part of the time when the corporate couldn't decide if they were going to let me come back or not, my supervisor called me and told me to come back after about 2 weeks. I went back that next day, only to find out that there was a survey going on ( I am a nurse) and that is why they called me in to work, corporate had no clue I was in the building. My immediate supervisor allowed me to work the rest of the week while the surveyors were there and then at the end of friday she told me she would let me know on Monday how she was going to schedule me and that is when I found out that they wanted to fire me for my attendances. I haven't done anything about it yet, I am still deciding. Just don't let them run over you, we do have rights. I know I can't go back to work right now, I pass out about 3 times a week and have incredible leg pain. I do like the license plate thing. Paige