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maggie

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Everything posted by maggie

  1. I had horses before I had pots and once I was sick I sold my horses. It would take a very special horse to be able to ride with pots. My horses were gated so that it was a very smooth ride, but I was afraid I would fall off. I'm glad it worked for this girl, but generally I don't think this would work well for those who have pots. But then what ever works for those of us who have pots, that's what one should do. Good for her for finding something to help her. Maggie
  2. I know this sounds crazy, but what I do to sleep is exercise. I found that it was my adrenal gland that was running high. I get up at 1:00 a.m. and can't get back to sleep until 3 or 4 in the morning. Now when this happens if I can't get back to sleep in a half hour I get up and put on my dance shoes and dance for twenty minutes. It drains my adrenal and I'm back to sleep in no time at all and I sleep until 7. I maybe crazy but it has worked wonders for me. Maggie
  3. I have two bullmastiffs that I raised from pup, there's nothing better then having my two dogs by my side. When I'm sick they just lay by me on the floor and wait untill I'm feeling better, to go for a walk. Have you ever considered getting a dog and then training them to be a service dog? I have done that with my mastiffs and now can take them anywhere with me. You can do it yourself and only when you feel well enough. Hope you enjoy your pup. Just a little hint it helps to have two, then when I'm not feeling well they can play together to get out their energy. I know it costs more but in the long run mine are the best of buddies and go everywhere together. Maggie
  4. Thanks for posting the article Rachel, it was good to read. I just wish more people would take an interest in this. If I gave this to anyone I knew I don't think they would read it to see what exactly I'm going through, which to me is very sad. Maggie
  5. futurehope, I made it into the program and received the program, it's a joke. Don't feel left out it would not have helped, in my opinion. If you look back into the blogs here, one of them discribe his protocol. I remember reading about it. We signed wavers stating we would not discuss the protocol with others, but someone opened up here on the blog who made it into the program. My neruo took a look at the program and stated no way was I too go to this extreme in so short of a time, he himself did not believe the program would work and his advise was to keep doing what I was doing instead. I did start the program and started to have problems, they tell you just call and they'll work it out. Well when I called their answer to me was go to your doctor, that really frustrated my neuro, who didn't like the program in the first place, it was then that I dropped it. Maggie
  6. Before pots I was very active with gardening, walking, quilting, and biking. Since pots I have found a whole new life. I now play the digital piano, sing, and have started song writing. I have my first song in producttion now and am so excited to have found this new talent just lying dorment all my life because I was too busy to stop. As soon as I get the song copywrited I'll try to get it uploaded hear. You'll be my first concert!!!! I also have started dance lessons which has improved my pots so much. I'm working on getting a web site up with my first dance lesson on it for the disabled as well. I think I will accomplish more with my life with pots then without. It has taught me never to quit and when I fall flat on my face to get myself up, dust myself off, and continue on. I hope this site will be my biggest support. I wish the best for all of us here to find new avenues to have a fulfilling life. Maggie
  7. I also am having this problem now with losing weight. In the six years that I have had pots I have lost 33 pounds, which doesn't seem that much, but I have never been overweight. Now I am reed thin. The doctor's are very worried, because now I have no weight to lose if I should have something go wrong. I also have no desire to eat. I eat because I have to. I eat often and small meals that way it doesn't get overwhelming. I am on a high fiber diet of veggies and fruit, with a small amount of protein. This keeps my digestive working just great, but not great for gaining weight. It seems you resolve one problem and it creates another. I'm 5'6 and 119 pounds, you can see almost every bone in me now. Maggie
  8. Lately I have been have much more difficult time sleeping at night. I know the most common recommendation is to stay in bed and try to relax. What I have found is that now it's my adrenal gland that is kicking off big time. I get up and put on may dancing shoes and do my dance exercises for twenty minutes and within thrity minutes I'm back to sleep. I know this sounds so strange, but that is what is helping me now to get some rest. Maggie
  9. I have always had very small veins, and getting a blood draw is quite difficult on me. Once while I was in the hospital they had to put my iv through my jugular vein, that was not fun. Maggie
  10. lemonsin2lemonade, I also have used my creative side much more since I have gotten pots. Before I was running around everywhere to busy to even use all my talent. Now that I have been forced to slow down and look deep inside I have found so many new ideas. In a way having gotten pots has opened new doors I don't believe I would have found if I hadn't been forced to slow down. I'm so glad for you to have found your new talent. Maybe you could ask a to have one of your pictures shown on the site, I'm sure that would inspire others here to try. Good luck with the drawing I hope it brings you great joy. Maggie
  11. As I posted it before I love music and it's my new love. How do you do that? I have written my first song lyric and it's now in production I call tonight and find if the music is ready and then I learn the song and then record it. It will be my first song and I'm a little nervious, I've never done this type of thing before, but what is there too lose? Keep on doing your thing it helps the healing process I do believe, it gets your mind off of your struggles and onto something positive. Great job. Maggie
  12. potsgirl I have tried to measure how much salt I take in a day and it's right around 1000 mgs. I know that's way to low for what the doctor's tell us we should be taking, but my body won't take any more, I get very sick if I intake much more then that. Maggie
  13. How I keep going is trying to help others even if it's only through this blog. I listen to music and now have begun to play. You can buy a used keyboard for almost nothing here in the states and have been taking lessons. I live in Florida so when I get discouraged I sit in the sun and look at my palm trees and lay around with my two dogs. I talk on the phone with good friends on days that I can't get out. I used to read books but have read so many I can't do that anymore. I look for hobbies that I can do at home just to pass the time during the day. Now I have started to sing with my songs and I have just written my first lyric. My advise is look into something that you might enjoy and then incorporate that into your life. I now have started dance lessons. I could only dance for 15 minutes at first, but now can for 30 minutes. All these things you can do with your daughter to have fun with her. Every little girl likes music, singing, dancing. I hope I have given you some ideas to look forward instead of where you are at now. Maggie
  14. Since I can't take meds for my pots I try to control it with my diet. Mine is very simple: breakfast 1/4 cup oatmeal, quick cook, little brown sugar, cinnamon, apple, with 20 oz of water. Two hours later I eat a half of a luna oatmeal rasin power bar with a banana, and 20 oz of water. Lunch is a whole grain bread with boar's head turkey, romaine lettuce, slice of cheese, carrots and salted nuts, 20 oz of water. Four in the afternoon 3 oz of yogert with strawberries and blueberries if I can get them, with 1/4 c of granola 20 oz of water. Dinner 3oz of chicken, turkey, sometimes beef, with raw vegatables 20 oz of water. I have lived on this diet for 6 years now and it being high fiber keeps my gi tract working just fine. I'm never hungry and it's very easy on the stomach. I know it sounds bland, but I never have to worry what I'm going to eat and it always sits well. I never have caffine, nor alcohol. I don't eat fish because the fda does not monitor it for chemicals even though they say it's so good for you. I don't eat any white flour, sugar, and I don't load up on salt. I looked into this and out table salt is so refine it will cause more damage in the long run I believe. This is what I found has worked for me, good luck finding what works for you. Maggie
  15. I also found the key to getting back up on my feet was working slowly. I was in a wheel chair for eighteen months and just couldn't get out of that thing. I was in the hosptial for some reason and the woman I roomed with was in great shape and I asked her about my condition. She offered this: she instructed me to walk one minute per hour every day until I could do that consistently then move it to two minutes per hour a day. That is what got me out of a wheel chair. I then started riding a recumbent bike for three years, I just couldn't do that anymore, so I started dance lessons, very slowly. I started with 15 minutes and am now up to 30 to 45 minutes depending on the day. I love dancing, I'm on my feet, gliding across the floor. I to loved to walk before pots came along and would walk for miles. Now dancing for 30 minutes is as fun as walking was. I hope you find a way to get back to some form of exercise that you can enjoy. All the best. Maggie
  16. Potsmama, I hope you had a good Christmas as well and I hope to be sharing more on youtube. Kids do come in handy some times, I have asked them to do many things for me on this computer and with language, even my t.v. I don't how I am ever going to survive with all these new fangle things! Maggie
  17. I am just finding this out now. I am finally seeing my heart rate dropping while I am upright, but I am still have symptoms. I was under the impression if I could get that heart rate down the rest would go away, I guess not, from what others are saying here. Maggie
  18. May I ask which cleveland clinic are you going to? I have an appointment in January at cleveland clinic in westin fl and have never been there before for pots. Maggie
  19. I also tried acupuncture and it made my heart rate go up 30 beats per minute and it made me quite sick with only 8 needles. I waited two weeks and tried it again this time only using 4 needles and again I had the same result. I was really hoping it would work, but unfortunately it didn't for me. I find if I'm not too anxious listening to music helps me calm down. Maggie
  20. I also have difficulties with anxiety and went on Xanax. Because I have a liver enzyme that doesn't work right I can't take most meds. I take the xanx only when I get anxious and it helps me so much just to settle down, it also helps me to sleep. I hope you find something that works for you. I get so anxious I can't leave the house at times, it's my comfort zone. Maggie
  21. I just received my baby grand digital piano today! I am so excited to show you this, for all those who are trying to get their disability cases won I hope this next video gives you incentive to keep going when the road gets tough, because my baby grand is my disability check. The best to all and thanks again for supporting me in this endveavor. Maggie
  22. Thanks so much misstraci, it was fun doing the video, I'm hoping to do another one soon. Hope you had a good day as well. We spent the evening at the beach, no snow, but a beautiful sunset. Maggie
  23. I believe the lawyer makes the process much easier. What he did for me was he actually went to every doctor of mine and did the interview in person. He then took the information off ths site that I posted before, someone else posted the way he won his case. Then my lawyer wrote up the medical report for each doctor and then the doctor just signed the papers. He interviewed me twice before the hearing and he did all the talking. Some of the times he informed me that the judge would only want me to speak, but at my case he only wanted to hear from the lawyer, and I just stayed quite. Like I stated before he took off all the pressure of me and the doctors because the lawyer did all the work. Doctors are so busy they really don't have the time to fill out all the paper work it takes to get our cases to court. My lawyer stated with the help of this site and the doctors my case was the easiest he ever had because we were so prepared. I hope you can find a lawyer as good as mine was and win that case. Maggie
  24. Thanks so much for all the sweet comments they mean so much to me. I did ask my daughter this afternoon and she told me BTW is by the way. Oh well I will learn all this new language one of these days and by then there will be something new. Wishing all those on this site a wonderful new year. Maggie
  25. I asked my doctor for a good disability lawyer right upfront and it didn't cost me anything to file. He did get 30 percent of my disability, but it was well worth it. I had to wait two years for my case to come to court, but I had my disability in five minutes, and I received a nice big check, that's what I used to buy my new digital baby grand! Hope it goes better the next time around. Maggie
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