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maggie

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Everything posted by maggie

  1. All the thanks goes to cranberry tea time, she was the one who discovered how to do it for me. It's so nice to have people on this site who are so willing to help a person in need. I hope we all have a good new year and support those of us who will have a difficult time. Maggie
  2. potsgirl we would be staying in a hotel as well and we will be driving so we could pick you up, no problem. Maybe we could stay at the same hotel, that might not be the best idea since I would get so exicited I would probably be knocking at your door all night long, since I don't sleep all that well. I know just don't tell me what room you're staying in and I promise I won't ask at the front desk! Maggie
  3. songcanary I'm glad you liked the video. I know this sounds a little dumb but what does BTW stand for? I don't text and have no idea what all these letters stand for, still learning. I thought lol was laugh out loud and my kids just groaned and said oh mom it's lots of luck. So please educate me on this one so that my kids don't groan again! I wish all the best to you and your family. I have trained my dogs when I'm out and I happen to faint, which doesn't happen often to: one stands by my head and one at my feet until I come to. I then sit up and wherever I am I call my husband and he comes and takes me home. On long lonely days thay stay by my side all day long. I have been blessed with two wonderful dogs and a very loving husband. Maggie
  4. Potsmama do you have a computer with a camera in it? I have a lap top and it's all set up for skype. If your computer has this feature I will bring mine and then I can skype you the meeting, that way you will be able to participate right from your home. I hope this works for you and others. Maggie
  5. I'm so glad you liked it alicia it made me quite nervious to do it, but I was bound and determined to get it done. Now it is so much fun to see that it's at the top of the page. Thank you for helping me with this little project. I'm working on my next one right now and hope to have it up soon. Maggie
  6. I am having difficulties with my adreline gland the doctors think and am going to see a doctor in January for this every thing. In the mean time if I can't control my temper I'm don't leave the house. If you get housebound long enough one learns to keep their mouth shut. It's taken me several months to learn to control my tongue, but I'm doing it so far. I hope you discover what is causing this and hope you can soon to enjoy the day. I have learned when I want to yell to turn around and walk away. Maggie
  7. Potsgirl, it would be great if you could do both. I am really going to try and get there in Atlanta for this meeting. My husband has been working so many hours, I'm sure they will give us some time off, for good behavior!! Look forward to seeing you there or maybe on skype. All you would have to do is bring a computer that has skype and then just give me a phone call before you start and I know to go on. I skype with my kids all the time, they were the ones who set me up. Maggie
  8. If you do it on a Sunday we can be there any time. We would most likely take off Monday as well to drive home. It doesn't matter what time of day, but afternoon or evening is better for me as well. This sounds like so much fun, please let's make sure we continue to plan. I love Atlanta and I might spend a few days there. Maggie
  9. I wish I could be there but Tucson is too far to travel, I hope you all have a great time and let the rest of us know how it goes. I was wondering if you could skype your meeting on that Saturday, I have my computer hooked up for skype and I could still join in. Do you think that is possible? Maggie
  10. Rachel, although I live in south Florida I would love to meet up with you and any others who might want to meet. I would have to have some notice for it's a 12 hour drive for us and my husband works on Saturday. He could get off with enough notice and that would give us time to drive it on Saturday and meet up with you on Sunday. I hope this works out we tried awhile ago to get a group together and it never did work out, but I am hoping this will. Maggie
  11. I find I can't put my head down, I believe some yoga postitions have this, I pass out when I lower my head. I keep my heart rate lower then 140, but sometimes it does go higher, but it comes down quickly after I stop and rest. What I have found that with adrenline surges that I tend to get, if I dance for 15 minutes and then rest it usually drops my adreline. At night when I can't sleep I do the same thing. I dance for 15 minutes then within 30 minutes I'm sleeping. So good to hear all these good suggestions what works for others. Maggie
  12. I was accepted into the Dallas program for exercise. When I received the protocol I knew there wasn't any way that it was going to work. What I did find was that he used an exercise physiologist and I found one in my town. She had never heard of pots, but was so curious that she researched it and between her and my internest they were able to get me into the hospital program. She developed a program just for me and I followed it for three years. Most of it was warm ups and then riding a recumbent bike. I did that for three years and I just couldn't ride that bike any more. So I decided it was time to do something fun to keep me interested. I called all the dance studios in town and none would take me for the risk of liability. Fortunately my husband new an owner of a dance studio and he agreed to take me on. I have been dancing for four months now and my heart rate has gone down 15 beats per minute. I went to see my nerurologist and he couldn't believe it. I did give my dance instructor the exercise program so he could see where she was going. The key was to start slow, work up very slowly and keep track of my heart rate. Some days I can only dance 15 minutes other days I can dance 45 minutes. It has been so wonderful to be back on my feet once again. Now I have dance steps that I do at home when feeling good. It's just amazing at how it has helped me. I am hoping to have these routines set to video and hope the forum allows me to post this on this site. It would be so interesting if others would try and if it would help those here as it has helped me. What I am finding out, is that what helps one doesn't mean it will help others. Maggie
  13. Thank you Cranberry Tea for helping get this on, it's working now, hope youall enjoy! Maggie
  14. With the help of a very good friend, I am hoping this works. Here's the link to my youtube video: . It's my prayer that all those on this site have a blessed holiday season and hope we all find peace and joy in the new year. Sorry it doesn't work I will try to fix it.Maggie
  15. I found an eye doctor here in town that has an opto map machine to take pictures of my eyes since I can't use the drops to dilate my eyes. He informed me that when they dilate a person's eyes they open to the number 9, my eyes without being dilated are open to the number 6 all the time. He says it's almost to they point where he can see most of my eye through this machine without even dilating my eyes. It was very interesting to know the exact number my eyes were actually dilated to. Maggie
  16. It was heart breaking to read your post. I did go to Mayo in Jacksonville for my dx but did it as an out patient. I have a mild case of pots and don't have nearly all or as difficult time as you are having with pots. The treatment was good, I really didn't like my neurologist at Mayo, but the other doctors were great as was their help who did all the tests. The sad part was that I received my dx of pots, but they don't treat in Jacksonvile. I had to find my own neurologist here in Florida who treats pots, couldn't find one, and fianlly found a neurologist who would help. I sure will be praying for you that your health takes a turn for the better. Maggie
  17. I just received my disability this July. There is a blog on this forum that someone posted and it showed exactly what and how to go about getting your disability. I printed it out and gave it to my lawyer, he followed with some of my other medical issues, and it took two years to get in front of a judge, but I had my verdict in five minutes. I now received disability and I still can earn a certain amount each year without losing my benifits, sorry I can't remember the number, I'm in no shape to work. I did ask my lawyer what should I do if I get better and he just stated to call him then and then we would discuss the issue and decide then what to do. They don't take away your license or car, I do believe my lawyer stated they might call me in a year or two to see how I am doing, but then again he just said to call him. Maggie
  18. Please don't feel it's wrong to be afraid when it comes to dealing with health issues. We all are afraid of things we don't understand that are happening to us here. I have had pots six years and still find there are times when I feel afraid, wondering is this going to get worse, will it ever get better. I want to tell you I'm at a point that I am improving and that is scary. I asked my doctor and he agreed that after six years of being ill, improving would be difficult as well. One finally excepts life the way it is and that bang, it changes again. I think we are all trying to learn to take it a day at a time here, but it doesn't come easy and we have to keep learning this every day. I can't tell you what others have experienced here but when my appendix ruptured two years ago I flat lined from too much pain med and it took three weeks of intense meds to get rid of all the infection in my body. I could have died and at the time I was so sick I didn't even realize that this could happen. I do believe that when it's your time to leave this earth, if you have faith, that will carry you through those doors. That's only my opinion and I hope I haven't offended anyone here on this site by these words. I don't believe you will die from any procedure that you might be facing, even though it truely feels like it. I hope all goes well for you. Maggie
  19. I am not able to get a link up on youtube and I haven't heard from the gentleman who is designing my web page. I hope some more of you can take a peak at this. I have written a song lyric and it is now in production. I am trying to get the awareness out into the public in regards to what all of us here experience everyday. My prayer is that we may all enjoy this holdiay season to the best of our ability. Maggie
  20. I have checked with both sides of my family medical history and there is no one who has shown any signs of any problems with any neurology problems. I have been the first to show signs and I was dx at the age of 52. I have no clue where mine came from. I have four daughters and one son and I'm hoping none of them ever have to go through what I have. At least I know what the signs are and have warned all them to keep this in mind. Maggie
  21. I am getting the point that not everyone goes on youtube, my daughter couldn't find it either, sorry guys. I don't think I'm that skilled to get the link up, but I will try. By next week I will have a web page up with an address and will be able to send that out to you all. I hope that is ok with the forum, I don't want to break any rules here, I love this site and all the great info I have received from all of you. maggie
  22. I understand those here on this site are having a difficult time and trying very hard to get better, or find others to share with. I have had pots for six years and have struggled with you all as well. I posted this blog during this holiday season to bring some cheer to those of us who are struggling.
  23. To all those on this site I'm on youtube, I recorded my song and then sang with the recording. My husband played the applause button on my baby grand. My two bullmastiffs are now certified service dogs. I hope you all enjoy the video, I have just written my first song and it's now in production, I hope to add it to my list. Merry Christimas everyone. Just type in the name No Name Band, then add we wish you a merry christmas, that's the name of my band. Maggie
  24. I have just developed in the last four months adrenaline surges, really intense. In fact it is affecting me so much that my doctor has no clue what to do in this regard. I'm getting only four hours of sleep a night, I have so much energy I don't know what to do with it. I keep losing weight, I am usually a very rational person and have been making very irrational decisions. My sexual drive has gone from nothing, to driving my husband crazy. {at first he thought it was great, now after four months he's afraid to come home} What I have found to help is that I exercise for 15 minutes doing a dance routine I have learned from my dance classes. I get my heart rate going and then I sit down and in ten minutes my adrenaline begins to lower by itself. It's not enough to get me to sleep so I take a small dose of xanax to help me sleep. I now exercise twice a day and I finally am getting seven hours of sleep. I am trying to get into John Hopkins to see if they can help me discover what on earth has changed with my pots and if there is anything they can do for me. Maggie
  25. My vitamen d was at 13, six months later I am up to the low 30's. I live in Florida and sun bathe for 20 minutes as often as I can. It's harder in the summer, but I cut my grass on a riding mower when it's cloudy or raining. I live on ten acres with no neighbors and just lay out there stark naked!!!! Now don't any of you coming looking for me you hear!!!!! Maggie
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