maggie

I keep myself on a very restrictive diet to help maintain my pots symptoms. I can't take meds so I do as much as possible with food to help with my condition. Therefore my weight doesn't vary much at all. I lost 30 pounds when I was first dx with pots and another 15 when I had my appendix ruptured, but have not gained any of that weight back as of yet. I do a limited amount of exercise when I can, but I am surprised that I don't gain any of that weight back. So to answer your question my symptoms don't vary with my weight. Maggie

I also need to have a colonscopy done soon and when I had my appendix taken out plus four inches of my colon they used propofol and it went fine. I don't have ans or your other medical problems but I do have a liver enzyme problem which makes it very difficult for doctors to use meds on me. Cleveland Clinic in Florida is doing my colonscopy and hopefully all will go well. I can't make it through the cleansing process so they are trying to help me with this process. I'm to take mirilax and divide the one dose into four and take it slowly through the day and see if this will work. I do this for three days and then if I make that they will be able to do the colonscopy. If I can't get through this procedure they are going to admit to the hospital and put a tube down my nose and clean me out that way. Oh the fun we have, I just can't wait to have this all done, that's why I have been putting it off. Hope is all goes well for youl Maggie

I just had a liver scan done at Miami University and don't have a fatty liver, no liver damage. I have had pots for almost five years now but have recently have been dx with hepitis c. Since my liver is doing well so far the dr is just going to keep an eye on my liver. I have a liver enzyme problem so he doesn't want to give me any milk thistle which is what they use for this condition. Maggie

Potsgirl, Hope all goes well for you tomorrow. I'm glad they caught your appendix before it ruptured it will help with recouping. I'll be keeping you in my prayers tomorrow that the dr will find everything that needs to be found and hope for a speedy recovery. Maggie

I also have a power wheelchair for my pots. When first dx I couldn't even get to the bathroom. In order to do things for myself that's how I started my journey. Now that I am able to get around better on my feet I do that most of the time. If I'm going somewhere that requires more walking then I can do I still use my chair. It gets me to places I couldn't get to yet. I am looking forward to the day when I can not have to use it ever again. Maggie

Thanks for sharing your story. It's so good to read that after all those years one still can get better, it certainly is an encouragment to me. I'll continue with getting on my feet and just keep moving. Maggie

I just got off the phone with Dr. Levine's associate and have started the process to see if I qualify for this program. It goes through my doctor here in Florida so I won't have to travel to Texas. It will be interesting to see what comes of this, I'm hoping maybe this will help me. Maggie

I'm sorry to read about your loss. It's so hard to loose one's mother. I'll be praying for you to begin to find some peace and remember all the good times you had with your mom. Maggie

I also had this problem with too many medical issues to be put on a medical bracelet. I found online a meditag that I can upload all the medical records any dr would need for me in case of an emergency. It comes on a long cloth and can be worn around the neck or just stick it in your purse. All the dr has to do is put the devise into a computer and use word perfect to print out my medical records, dr's numbers, and anything else they would need to know in order to treat me. I hope this helps you. Maggie

Julie thanks for your response. I did argue with the dr in regards to my results when they told me, especially since I had a negative report first about ten years ago. The dr sent my blood work to Mayo and they confirmed what the tests results were. I can't take the meds they have now because of a liver enzyme problem I have, that's why I can take the vaccine and not the drugs. Unfortunately my strain of hep c can not be helped with drugs anyway. I'm sorry if I didn't get across that I saw the dr in Miami in three weeks of dx, now I go back in two years to see how my liver is doing and learn what the results they are getting from the vaccine. The dr in Miami is now my primary, he gave me his home phone number, such a nice dr. He wants to know if any other dr that I'm seeing changes anything I first have to check with him so that it won't hurt my liver. It has been a difficult time trying to process this all. At least this time I got a dx that many people have and they are doing tons of research on, not like pots. Maggie

I was just at my nero and discussing my new issue. Not only do I have pots, but a recent test shows I now have hepitis c. My nero was wondering if anyone here on the site has this as well and if they're willing to discuss this topic what if anything are they doing about this. I saw a dr in Miami which is one of the best hep c clinics in US and there is a vaccine coming out to cure hep c in 2011. The dr in Miami has never had a case of pots and took time to look it up and discuss this with me during my appointment with him. At this point I have no liver damage and I return in two years to see how my liver is doing. The dr hopes to give me the vaccine in 2015. He wants to make sure if there are any bugs in the vaccine so that's why he's waiting to give it to me. Maggie

I'm very blessed to have the husband I have. I have had pots for four years now and he has always supportive. Through the 38 years of our marriage I have supported him in his business where he works long hours and now he feels it's time he returns the support. He still works long hours and the days are long for me, but I have been fortunate that I am able to do small things most days with my pots. He calls several times a day to see how I'm doing or just to chat to pass the time. If I'm not able to cook that day he brings home dinner. He has taken over the chores I'm no longer able to do. I thank God every day for this wonderful blessing in my mate. It would help if we could have support groups where our mates could see others who suffer from this and see they're not the only ones who are caregivers. For those who don't get support my heart goes out to you, if it were not for my husband I know having this would be much more difficult. Maggie

This post came at just the time I needed encouragement. I was doing so well until my appendix ruptured. I've lost so much of my gains, exercising for three years gone in two weeks. I too have had periods of crying for my loses. I'm sure this is normal for us here, but it was so good to read these others stories and know I'm not alone. Thankgoodness for this chat forum. I pray for all who posted on this topic that we will all have the patience to endure the struggles we face daily and hope our health will improve in time. Maggie

I m so greatful to those who have resonded to my post. I really appreciate what my family has all helped out with. I still really can t believe all this took place espcially having to add pots into the mixure. Thanks for all the advice and care. It will still take me 9 more weeks to recoperate, thank goodness for daughters. Maggie

On Friday 24 I noticed not feeling well after eating a snack. By Tuesday morning I was so sick I called my husbsnd. While putting on my heart monitor I noticed I looked like I was four months pregregant, couldln,t be, so I called my neuro. He stated that this could have nothing to do with pots get to the ER. They got me right in and did a ct scan. I had a partially blocked colon,but the Dr. weren't sure where. They put me on a liquid diet to see if it would open up, no luck. OnFriday morning the Dr. did orthoscoptick surgery and found my appendicts had ruptured and gangrene had set in. They proceded to take out 4 inches of my colon and now I'm at home recuperating with my daughter. My Hospital stay was 15 days, and they estimate my recoperation to take @ 9 weeks. I can't believe how far back this has set me. Maggie

lissy, I don't know why some are afraid to reach out for help, maybe fear of rejection. I know of a woman who had gotten pots right after the birth of her first child. Her mom came and helped for the first six months but then needed to return home. The church this woman attended came to her aid. They set up a schedule and one woman volunteered one day a week to help out. What a wonderful gift for her. A year after her dx her husband was dx with cancer and within six months he died leaving her with a small child and her with pots. Again the church stepped up to the plate and helped her through this struggle. She now has remarried and is doing fairly well. If we don't reach out and ask for help people won't know the need. I know anyone of you on ths forum now that you have had this type of struggle would help one in need if you were well. We have to give people the benifit of the doubt and ask for help. Remember ask and you shall recieve. We don't know in what shape God will send the help, but he hears our prayers and answers. I hope you will reach out and get the help you need at this point in your life for you and your family. Maggie

Maisie, So sorry to read that your health is going downhill. When I first had my symptons I could walk and move around quite well without my heart rate going too high. As soon as the doctors started me on meds is when I went downhill fast. I'm not saying this is the cause for your issues just telling you it can happen. I had the same reaction as you, panic, crying, and really fearful of what was going to happen next. I was bedridden for six month, wheel chair for a year. Now it's four years later and I'm no longer in a wheel chair except if I have to walk really far. I'm not near to normal yet but far from bedridden. Hope you can find some answers soon. Maggie

I had a brain scan and my was normal. I find that hard to believe since I have gotten pots I can't remember anything. I wouldn't have been surprise if they found that part of my body missing in action! Maggie

Potsgirl, Ialso get very tired in the afternoon. I am able to take a one to two hour nap in the afternoon, that way I am able to function in the evening. On the days I don't nap I have a more difficult time in the evenings. I can't get to sleep before 11:00 but usually sleep, not very restful, until 8:00 the next morning. I'm sorry not much help. I usually fall asleep in the afternoon listening to music and my two dogs snoring maybe that's the key. Maggie

Futurehope, For all you Cracker Barrel fans we have one just down the street maybe ten minutes away! The rest of the resturants are closer to town about 15 to 20 minute drive. Hope to see you and your husband. We have two grocery stores about ten minutes away as well for those of you who would rather eat in. The guesthouse has a wrap around porch so you can have your meals inside or out on the porch. I'm hoping to share my little piece of heaven. Maggie

Potsgirl, With my husband's job he only gets the day of the holiday off, so the holidays are not a problem to have people come and stay. We have worked out with our children to spend the holidays before or after the actual holiday so that they can be with the other side of their spouses on holidays. I know David is a teacher so he would have off then. Please feel free to come during the holidays. Maggie

Notgivinup, It's not a problem having your husband and son coming. The purpose of offering this invitation to those of us with medical issues is to get away with our family members to relax and try to refresh out lives. Will find something for your five old to sleep on during your stay here. With ten acres fenced in your son can run around to his hearts content. My pool is not fenced so that would be a concern for you and your husband, you would need to keep an eye on him so that he wouldn't get into it without supervision. The pool is a beach walk in so it would be very easy for your son to get into the pool. I hope you take advantage of our offer. Maggie

Thanks for helping Dawg Tired, I'm sending you four more square your way. Can't wait to see them finished. Maggie

Margarita, I see a neruo in Sarasota. I'm his first pots patient but he has a friend who works in neurology at Mayo Rochester. If he runs into questions he just calls his friend and gets the answer. He doesn't take my insurance, but he also reasonable. My primary dr knows nothing about pots and is too busy to even try to help. I haven't seen him since I have gotten pots, my neuro takes care of all my medicals probelms. Maggie

Hey Chat Forum Members, I have an invitation to all those on this forum who are having difficulties with any form of dysautonomia. I live in Fort Myers Florida and my house is on ten acres, which includes a self standing guesthouse. The guesthouse is completely self contained with walk in shower, queen size bed, and full kitchen. I also have an electric wheel chair that you may use while here and if you're really feeling good you can ride around the area with my recumbent bike. I know many of you cannot travel and I'm sorry you can't take advantage of this opportunity, but to those who can travel my house is open to you. I live about 15 minutes from town and about 45 minutes from the beaches. You can relax by my pool, not heated, or take a nap on our hammock under the palm trees. The weather here is so nice now maybe some of you would like to escape the cold gray winter days. I hope some of you can take advantage of this and come and see us in sunny Florida. The only thing I ask is that you rent a car while here. I'm only 20 minutes from Fort Myers International Airport. If you should only want to stay by us and not rent a car we can pick you up from the airport and bring you back. Maggie