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maggie

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Everything posted by maggie

  1. I'm so glad you are close to your family. I guess it's hard for any of us who have these issues to understand and it would be that much harder for someone who doesn't have these issues to understand at all. I hope in time they will come to understand what you are going through and will lend a helping hand. All of us need a helping hand and this forum shows the world we are doing the best we can with what we have been delt. On this eve of Thanksgiving it is my prayer that all human beings be kind to one another on just one day of the year. Maggie
  2. Good Job Lette, I'm so proud of you. I don't if I understand how to find you on the net since I live in the States, but I will give it a try. I wish you the best, anything is better then nothing. Maggie
  3. If people are not interested in hearing your story why don't you just let it go and ask them how their day is going? I'm just getting well enough after being mostly home bound for six years and frankly I'm sick of talking about pots, I want to talk about anything else other then my disorder. I love finding out how other people are coping with what ever is going on in their lives. You might find if you listen to their story first and show concern for their need, because whether well or ill we all have needs, maybe they will stop and listen to yours. Frankly listening to others reminds me there are worse things out there then what I am dealing with. I find it rewarding to just show compassion to others, it's a small deed, but at this point that's about all the help I can give others. It makes my day when I can make a person laugh and cheer them up. We all could use some cheer especially this time of year. So take a chance, step out of your box and discover your gift of compassion blossom. Maggie
  4. I am not going to feel sorry for myself or any of the others on this sight for their health issues. I have had pots now for 6 years and have been fighting with all my strength to get back some of my life. I had to give up my active life sytle just like the rest of you and yes, I cried. It's only normal to cry for the loss. But the crying has stopped and the moving forward has started and nothing is going to stop me from living life! I now play the digital piano for enjoyment. I now am learning to sing. I have just written my first song lyric and working with a producer to record my song. I am also working on a new business of training service dogs for those in need. All these new adventures would have never come to the surface if I had never gotten pots. I now have a better understanding for those in need if I hadn't gone through this myself. Now my songs are all written from my life experiences. I'm also taking dance lessons to help me restore some of my strength back. I am also working on a video in regards to dancing to help us with pots with the help of my dance instructor. Does my life sound empty? In no way, it is more exciting now then before because I now know how sweet life was and can be if only you stop looking at what you have lost and start seeking for what you can find. My prayers go to all those who have loss, and that is everyone here on earth where it be health, relationships, or another type of loss. Maggie
  5. Amen to what MomtoGiulana wrote!!! Maggie
  6. I was on the protocol study and it made my pots worse from the day I started. I lasted three months and my doctor told me to stop that it was only making my life worse. It may work for some, but not for me. Maggie
  7. I was treated by Dr. Flipse and loved him. He's a very caring man, takes time with you, explains what he's doing, answers questions. I can't say enough good about him. Enjoy you visit with him, don't worry. Maggie
  8. I can't handle the drops, in two minutes I will be throwing up in the trash can, the techs move fast to get the garbage can. I found the doctor who use an opto map that doesn't require to dialate the eyes. Good Luck. Maggie
  9. As I was thinking about my last blog, I forgot to add that I believe what really helped me was my liver enzyme problem, not being able to take any medications for pots is what made my case different from most and gave the judge the motivation to grant me my disability. Maggie
  10. I think what worked in my favor was a good lawyer and doctors who supported me in getting this. The doctors corporated with my attorney, the attorney wrote all the letters and the doctors just signed the paper work. Another thing I believe that worked out well was a while back someone posted how they received their disability and wrote the steps they went through. I gave that to my lawyer and he followed it to a tee. We used a smart sync to give data that a judge could actully see, proof of what takes place in my body. I didn't have to wait for my response in the mail like my lawyer stated, the judge granted me it right on the spot. Now it's just waiting to get the paper work done to start receiving benifits. I found my lawyer through one of my doctors who has many disabled patients, the gentleman really did his homework. I will receive five years of back pay from when I received my dx, one lump sum and then my monthly checks. My attorney was surprised that it went so well and so fast, not usual he stated. I wish you luck in getting yours. Maggie
  11. I just returned home from my hearing and was granted disibility. The whole court process took five minutes. I guess this is a good day, but in other way it's sad. Maggie
  12. I can't use the drops they use to dilate your eyes. It only takes two minutes and I'm throwing up. I now go to a doctor that uses a machine called an optomap and you don't need to have your eyes dilated. Maggie
  13. Mayo will not give you a primary doctor I do not believe. I first went there with the dx of inapporiate sinus tachycardia. I saw an electrophisologist first and he ruled out that dx. Dr. Cheshire is the only doctor at Mayo in Jacksonville that works with pots . If you need a doctor in another area they assign the one they think is best. The doctors all work together which is very nice. By the time you get to your next appointment all the tests results are already at the next doctor's visit. I have a classmate who works for Mayo and I talked to him regarding Dr. Cheshire, he agreed that his bedside manner could be improved on, but he was the only one at Mayo. The other issue with Mayo is that you pay upfront and wait to receive your money back from your insurance company. It cost us over $10,000.00 to get my results from Mayo in three weeks. I didn't know this at the time and it was a good thing we had a high limit on our credit card or else they wouldn't have seen me until we had worked out the money issue. I don't think that policy has changed, but I would check on it before you decide to go. Sorry I don't have better answers for you, it's a difficult decision to make, especially because you don't know what then end cost will be. Maggie
  14. I was dx by Dr. Chesire for pots and he never did any testing for underlying causes for my pots. I didn't have a very good experience with him, but maybe it would be different for you. He stated he would explain any issues I would have with pots and that never came about. Also he doesn't treat he only dx. I don't know if that helps you or not, but I think I would look for someone else, only my opinion. Maggie
  15. There is no way I'm going to let pots rule my life! Yes, it was difficult at first getting out and being around people again, but I took small tiny steps, did it a little at a time and then started going for longer times to different places. Now I go to piano lessons, once a week, take a 30 minute dance class, and attend a line dance class one evening, if it's only for 15 minutes that I can dance. I'm still out there talking to people explaining my health issues, I haven't met anyone yet who has not listened or has helped me out when needed. I would never stop trying until I was able to overcome this part of pots. Was it difficult yes, but the end results are well worth it. I hope everyone who has posted here and reads this will be encouraged to try just one thing, even if it doesn't go well, keep on trying until you can, don't give up. There if life at the end of the tunnel. Maggie
  16. I really doesn't matter what age one gets this disorder, what matters is what you do from here. We all go through the grieving process for all that we have lost and that's normal. Once that step has been completed it is up to us the person to determine our lives. I have come to accept my disability and the things I can no longer do that I once could. Now my complete focus is not on what I can't do, but what I can. Since being active is no longer available I decided what can I do sitting. I have been listening to music at night to help me relax and sleep. While laying in my bed I thought to myself I can sit at a keyboard even though I have never in my life played anything musical, now when I have all the time in the world is the time to begin. I told my husband my plan and the very next day we were out buying me a digital piano. You can find these very reasonable now. Then I starting call around for teachers who would be willing to give me lessons, knowing that there are days that I just won't be able to make a lesson. You will find many teachers out there who are willing to help someone in need, I find all you need to do is swallow your pride and ask. Now I play my keyboard for hours. I don't care how long it takes me learn a song, I have the time and I have come to love music and now being actually to play it is so rewarding. I have been able to exercise some and so now instead of riding my recumbent bike I take dance lessons! Yes, for a person who has never danced in my life I am now dancing. It may be only for 15 minutes some days or 30 minutes another, I find this ten times more fun then riding that bike! My advise to you is to begin to dream again only in a different way. These are only examples that I have decided to try, think of all the other outlets there are out there just waiting to be discovered, there's painting, drawing, writing,and so many other opportunties waiting. Don't spend another day dwelling on the lose start dwelling on the possibilities. Maggoe
  17. I was dx at Mayo in Florida with pots. Dr. Cheshire is the only neru who will work with you on this. His bedside manners stink, but he was the only one in Florida to give me my dx. The problem is they don't treat they just dx so then you have to find a doctor on your own to treat. Dr. Cheshire told me not to research pots until I had my dx and then he would explain everything I would need to know. That did not happen I saw him for five minutes, was given my results, and that was it. This is your decision to make, I'm just telling you what to expect in Florida. If you do go there research everything you can upfront and come armed with all the questions you can think of. Maggie
  18. Naomi, There isn't really all that much to tell about my liver enzyme deficiency. If you go to the web site it will tell you all you need to know. When I took the test it was still in it's testing mode. Now that it has been established some insurance will pay to have this testing done. What's really nice is I have an assigned doctor and I give her a call when they want me to try something new, and she checks my chart and tells me if I can take it or not. They only do pharm drugs no herbals or vitamens, so I'm instructed not to take any of those because we don't know how it is metabolized. My neuro also has a device when I see him and it tells him where the med is metabolized so now I usually just go through my doctor. If you have any more questions in regards to this just feel free to ask. As to what JoeJack101 was writing about, if one has a liver enzyme deficiency nothing will cure it, it's a birth defect, I was born with this and has nothing to do with my having pots. Maggie
  19. I also have a drug sensitive response. I followed up on a report I saw on a news station. If you go to www.pgxlab.com it will show you how to get your dna tested for this problem. I have a liver enzyme deficiency, so any drug or herbal that metabolizes in that enzyme is stronger then the dosage states and lasts longer. Now I have a copy of all the drugs that I can not use and that has relieved many of my problems with meds. Hope this helps. Maggie
  20. It's hard to watch our children's lives turn upside down. I have a daughter who has learning disabilities and have helped and watched her struggle all through her school years. I know that having pots has changed my life. I have had it now for five years. There is a time for mourning what has been lost, but hopefully your daughter will be able to fill that void with something else. I have come to accept this as my life now and have made the choice to enhance my life as best as I can with this disorder. Almost a year ago I took up playing a digital keyboard and today a beautiful baby grand digital paino sits in my living and I spend hours on it each day. What joy music has brought back into my life. I don't know if I hadn't gotten ill that I would have taken the time to stop my busy life and explore this new avenue. I pray that your daughter will make the choice to accept this illness into her life and turn it into something positive for herself, whatever that may be. God be with you in this journey, Maggie
  21. Are you using an attorney to try and get your disablity? I have hired one and my court date is set for July. I don't have to checked out by any doctor. In fact it's quite the opposite. My attorney is taking depositions from all my doctors to prove to the judge that there isn't any way I could be working with this condition. Hope it goes well for you. Maybe run up and down some stairs before you see the doctor, just kidding, but that would certainly get my heart rate going for a good time. Maggie
  22. I can't gain a pound! I eat a very high fiber diet, raw veggies,fruit, whole grains. I stay away from all refine sugars and flours and eat a small amount of protein from small portions of meat. I eat small little meals five times a day with 20 onces of water with each meal. I also try not to eat anything that is packaged that would contain any additives. Once one gets used to this it's very easy to maintain one's weight. Maggie
  23. I will be praying for you as well. I can well understand you feelings in regards to taking pills. Until I was dx with my liver enzyme problem, I was getting so ill on most medications. Now that I have a doctor telling me if I can take the med or not is such a relief. I would stall for days wondering what was going to happen if I took the pills before. I'll pray all goes well and for strength to overcome the fear. Maggie
  24. Naomi, I don't know where you getting this information, but I haven't worked in years and the lawyers still are working on my case. It doesn't seem to matter as long as you have worked for five years. I just made it under the bar working for my husband's business for five years and a few months. I would seek another lawyer if I were you. I haven't hit any of the road blocks that you seem to be running into. Maggie
  25. I am working with a lawyer at this time to get disability. In regards to the person who posted her husband has too high of an income level in order to receive benefits, my lawyer has never discussed this issue with us. They have never asked once what my husband does, nor his income, nor how much we have in assets, I don't understand why this was an issue for you when it doesn't seem to be an issue for us. Maggie
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