maggie

I could use some help with this project. So far I have ten squares, which is not enough to make a quilt. I did send a quilt to Amy Van Der Kamp because of her circumstances. Maybe instead of auctioning off the quilt we could send the quilt to someone who is having a difficult time. I only need about ten more squares to make a small lap quilt. Please let's start a new tradition on this site and make a quilt for those in need. It's not difficult and you need no special talent. If you would like to see some samples of quilt squares just look through the history of the forum and you will see some squares that others have already sent me. All you need to do is pm me with your address and I'll send you out a square. I hope to hear from more of you soon. Maggie

1. I couldn't even walk for 15 min at 10,000 with pots 2. I do take xanax and it calms me down, but it doesn't come close to making me better 3. I can only do 20 minutes of very slow exercise, after four years of pots 4. On a day when I'm not feeling well the only thing I do is lay on the couch and eat small meals 5.Stress does make my symptons worse Maggie

Janey, It's good to read that you are coming to term with what is taking place in your life at this point. I think that's one of the hardest struggles to overcome. As a parent I guess I can see your parents view although it would be so much easier on you if they could accept the same outlook as you. As a mother from the time of your child's birth one begins to dream of what lies ahead for you child, and I can certainly tell you pots is not on that list of dreams. Maybe it's going to take her longer to understand then you. No mother wants to hear that their child even adult children are having medical issues. Maybe she could go with you to one of your doctor appointments to help her understand what is taking place, it might help her to understand better. Have patience with your family hopefully one day they will be your best supporters. Maggie

If you go to Dr. Oz's web site it states at the bottom of the site that it's for informational and entertainment purposes, not a substitute for medical advice etc... I certainly wouldn't look at our condition as a tool for him to use for entertainment purposes. Maggie

Elfie, Everyone on this forum is going through similiar difficulties. I think it's the most difficult part of pots is how to gain a new perspective on life and what direction one is able to move to. We are so limited as to what we are capable of doing, it shuts out so many possibilities that once we were able to achieve. Being isolated because of our health does limit friendships, but don't let these struggles stop you. This forum is one way to let out your frustration, but it also is a place where one will be encouraged to dream again only in a different way. Don't let pots stop you in your tracks. Take time to grieve what you have lost, slowly start thinking of what you can do, and then set out to attain those dreams. It will take you longer, but I have learned to enjoy the journey and appreciate what I am able to do. Maggie

Erika, Do you think the rest of us women here on this site did a perfect job of raising our children? Of course not! I have five children and thankfully I didn't get my pots until they were grown, but now comes the grandchildren. I don't even have the strength to pick up my grandaughter. All we can do is give these children that have been intrusted to us and do the best we can with what we are given. If you keep showing your children that you feel guilty about what you can and can not do you will be passing these thoughts on to your children. Parents are role models. Much better to be explaining to your children about what your limitations are and how you are learning to cope with them, then to keep expressing how guilty you feel. Start using your emotions to teach your children how to be helpful and compassionate to those in need. This will help them grow into mature adults. They will learn from a young age life isn't always fair, and that it is a choice as to how we deal with what comes our way. I don't mean to preach and I know your road is very difficult I wish I lived closer to lend a helping hand. Reach out to others around you for help, I'm sure there are those who would be willing to help, just as those of us here help with encouraging words. It's good that you can explain to us your frustrations and have a place to release all those negative emotions, now go and give those kids hugs and kisses from all of us here. Just know that you are their mother and can not be replaced no matter if that other person is healthier, prettier, or smarter. Your children love you and as they grow they will understand better all the things you did for them under such difficult circumstances. Maggie

When I first was dx with pots I was bedridden for 6 months and then in a wheel chair for a year. I happened to be in the hospital for being so sick and the woman next to me was talking about how I could ever get moving again when my heart rate kept going up. How does one start to exercise in that circumstance? She gave me an excelent idea. I started out walking one minute per hour if I could. Some days I couldn't and some days I could. When I was able to do that repeatedly I then went to two minutes per hour. I just kept adding minutes, which by the way probably took a month of trying to be able to move up just one minute. When I made it to ten minutes I was strong enough to start walking more. It was a very slow method but it worked out quite well without raising my heart rate. In regards to losing weight I eat very little. Being sick helped me loose 30 pounds but it's not a nice way to loose the weight. Once again it took six months to calm my stomach done in order to eat, but it has taught me how little I do need to eat to maintain the wieght I'm at now. Here's my menu. I eat 1/4 cup of oatmeal with an apple for breakfast with 20 ounces of water. Two hours later I eat half a protein bar with another 20 ounces of water. For lunch I eat one slice of whole grain bread with turkey, slice of cheese, lots of romain lettuce, carrots, and 20 ounces of water. About 4 in the afternoon I eat 3 ounces of yogert with as much fruit as I want with 1/4 great grain cereal and 20 ounces of water. For dinner I eat a little meat, lots of veggies, a small amount of potatoes and 20 ounces of water. Pretty boring diet but it works. My husband is twenty pounds over weight and has just started eating like this and has lost eight pounds with no exercise. I guess each person has to find what works for them and then stick with it. Maggie

Futurehope, I have the polar monitor that has a chest strap with a watch that I wear on my wrist. My husband set the watch for my lows and highs so it only beeps when I'm too high or at a good resting rate. I have found that you need to keep your receipt for proof of purchase, that's when I can send it in and they fix it free, just pay for the shipping. In regards to how high heart rates should go during exercising one would need to check with their dr because all of us are different. At this point my neuro does not want my heart rate to go over 120 while exercising. When this happens I stop rest and let it get back down and then continue on. There is a heart monitor for water, but it is a special heart monitor and costs more. Since I live in Florida I do have a pool, but am not allowed in it unattended because of my condition of pots. If you should become in distressed or you are a fainter the water is not the safest place to exercise. Maggie

Since I can't take any meds for pots I always wear a polar heart monitor to know where my heart rate is while being up on my feet. I get the easiest one to use and it lasts quite long. What's really nice is when it does break all I need to do is send it back to polar and they fix it for free, all I have to do is pay for the shipping. I have two so when one goes down I wear the other one while the one is being fixed. They are very simple to use and I find they are not uncomfortable to wear. I live in Florida where it really gets hot and I still have no problems with mine. Maggie

sorry to read about your history of health issues. The one good thing about this forum is that you don't have to live close to someone, don't have to leave the house, or you don't have to even leave your bed there is always someone on this forum. You can talk to someone anytime, ask questions, relieve your frustration and find support. I wish you the best and I certainly hope there is someone close to you in the Netherlands in which you could support one another in your journey. My family roots come from the Netherlands, both sets of grandparents came over to the US. Maggie

Julie Although I have pots I am not home bound, there are days when I can get out and be with others. When I am having a pots flare up, I'm so sick I don't want to see anyone. My question to you is would you want people to visit you at your home or would you just rather chat when you are up to it? I have recently met a woman in my area that is homebound and it seems like most days she isn't feeling well to visit. Could you please explain what you feel your needs are to the rest of us on this forum so that we could know what the best way to help those who are homebound? I'm sorry to read that your situation has gotten to the point of being homebound. I would like to be an encouragement to those in need, especially those who have the same disorder as me. Maggie

Welcome to our club Daphne! I'm sorry to read all the medical issues you're having at the age of 18. I guess my one advise to you is try not get discouraged and keep fighting for your health. As you will soon learn from reading this chat forum, most of us here took several doctors and several years to get our dx's. Keep reading and you will learn alot from this forum and I wish you the best in getting help for your health. Maggie

I too am glad there is such a med as xanax. I have a liver enzyme problem and can't take many meds, but Xanax is one I can. It helps me sleep and cuts the edge off life when I need it. As long as you are being monitored by a doctor I vote if it works take it. As you can see the differences of opinions on this chat each person has to decide what is good for them. Maggie

I had the very same experience as you at a major research hospital. The doctor there gave me my dx and left the room. I was in shock and my husband try calling the day after to get some answers and finally he got to his nurse. The answer to my question what now, who's going to treat me, was my primary dr. What a joke. How could my primary dr help when he's never heard of this and is over worked already. Life does get better though. I got my phone book out and started calling the bigger cities around me and finally found a very nice neruo who even though has never treated pots is doing an excellent job. He has done much research on it and has managed my case now for two years. I know it's a big let down, but take a breath, get back up again, and start calling. I hope you will find as kind of dr as I have in time. Maggie

Jim, I hurt to read your story. I have recently been contacted by a woman in my area with the same problem. She was hospitalized for six months in the small county I live in and they could not help her. One neruo did suggest she might has pots, but there is no doctor here to dx. She does have medicaid and it is of no help to her, doctors here are not taking it. In fact the last time I talked with her no dr would refill her meds, so now she has to go cold turkey, which we all know is not good. I have been calling everywhere to try and get her some help but to no avail. All the places here in fl, Mayo and Cleveland won't take her on. Where is she to go? I can't believe in this country there are people who need expert medical attention and are being told no. I have been doing alot of the leg work for her because she just can't stand to face more rejection, one can only take so much, espcially when you are ill. I know it doesn't seem like much help, but I will be praying for you and all those who so desperately need medical attention. Maggie

I was just reading a book when I came across this thought, accepting people as they are and dropping your expectations will free you up from stress and pain. and make life easier. I though this was fitting to this question. Why try so hard to convince others about your health? You know the truth and there really is no need to convince others of it, only yourself. Why waste energy on those who won't be open minded or show compassion save your energy for yourself and let go of what you cannot control. Remember these words when you come across something you don't understand and accept that person for who and where they are emotionally and physically. Maggie

Since I can't take meds to keep my heart rate lower I wear a heart monitor all the time while I'm up and around. I have been very focal about my condition, it's hard not to. The other day while I was out my heart monitor went off telling me I was too high and the little girl standing by me asked, where is that noise coming from? I gladly explained to her my condition and showed her my montior showing my heart rate. The little girl's mom was a little embarrassed at first, but when I took the time to explain to her daughter what was happening she became involved in the conversation as well. I told the little girl her mom might want to get her one of these special watches so she will always know where she is at. Here was a golden opportunity to tell someone about this condition and I took it. Only when people can see actually proof of how high my heart rate is going just standing there can they even begin to understand my condition. I feel it's my calling to educate as many people as I can of this rare condition. If we on this forum aren't focal and stand up for our cause who will? One day I hope I will run into someone who will have enough influence, such as a newpaper, magazine, or whatever to get this condition more exposure. Do I like having this condition? NO, but will I let it stop me from trying to improve my life, NEVER. I keep praying that someday, someone, somewhere, will care enough for a small group of people who need help with their health issues to see me and inspire and motivate them in the medical field to do more research for us and come up with some answers to our needs. I carry the banner of being a person with POTS proudly and will never be ashamed to disclose why my body doesn't work like normal humans. Maggie

I was on the cleveland clinic health chat today and it was on this topic. I asked this question: I have a neurological disorder called Postural Orthostatic Tachycardia Syndrome. I have been hearing on the news that people who are prone to neuro issues shoud not have the H1N1 given to them. What are your thoughts in regards to this issue? The doctor who answered my question was Dr. Thomas Tallman Medical Director for Disaster Preparedness of the Emergency Services Institute at cleveland clinic. His answer: Do not hesitate to get the H1N1 vaccine. The injectible vaccine does not contain live virus and is completely safe. The cases of neurological disorders associated with swine flue vaccine in 1976 were related to live virus vaccines. Ulitmately there was no good cause and effect relationship and the current H1N1 is completely safe in that regard. I'm not saying that everyone here should run out and get this vaccine, I don't think even after reading this I would get one, but I thought it would be good information for those of us on the forum to share. I have read about this topic being discussed before and thought I would add this to the forum. Maggie

Since I only have pots, my neuro is the main dr. Any medical procedure always goes through him first, he decides what course and meds I go on. Maggie

A week or so ago Michelle put on the forum about Cleveland Clinic online health chat. On Sept.30 they will be talking about pots. The web site is clevelandclinic.org/webchat. I'm not that good using the computer and am having problems trying to figure it out so that I will be ready and know how to us this site by the time the pots chat is on. Thanks for the help. Maggie

Michelle, I registered for this thinking what a great way to get information. I have some questions though. Do you have to preregister for the chat you would like to read? Do you only get to read the questions that people are asking, no audio? Thanks for this suggestion I just need a little help understanding how this site works. Maggie

Welcome to your new world of pots! You're in the right place to get help. After I recieved my dx of pots I had the same thing with crying. I must have cried buckets full for at least six months. Finally I think by body began to adjust to all that was happening and the crying stopped. I have pots now for almost 4 years and I still cry more then I used to before I had pots. While I was having my ttt done I was sobbing uncontrolable. I looked at the teck and asked what is this, I'm not afraid, I'm not hurting, why am I crying? She informed me that it was just a side effect and not to let it bother me. So now I take a box of kleenex with me and just have a good cry once in a while. Is it embarrasing, yes but I've learned not to care what others think, I'm just trying to get through the day. Take care of yourself and I hope things improve. Maggie

I just got off the phone with a dr that does this type of testing and discovered that in the state of FL where I live you have to have at least had your eyes dilated once. It seems as soon as I find an answer to my problem, it just brings on another. I called another dr who does the test and said that if my neuro would fax him over the reasons why the dilation didn't go well they would perform the test. Through researching this more I found out this mapping of your eye isn't as good as dilation, but if I can't get my eyes even dilated it's better then nothing. Just thought I let you chat members know the update on this procedure. The laws maybe different in each state. Maggie

A few days ago I explained my having problems with my eye exam. I was talking about this with my sister and she gave me this information. There is a new procedure out that gives you an eye exam without dilation of your eyes. Anyone who is interested in this can go to the web site www.optos.com/us/ and read about it. Hope this helps some of you who as I can't handle the procedure. Maggie

Thanks for sharing this information on the forum. It's so difficult to find doctors to help us. I will certainly join in and pray for this man, his wife, and family. Maggie