Ernie Posted June 20, 2008 Report Share Posted June 20, 2008 Hi everyone,The oldies know pretty well my story but I will give a brief resume for the newcomers.I became disabled overnight on December 12th 2000. I was bedridden and in a powerchair since then. I was fainting every time I was standing up, so about 10 times a day. At first the specialists told me that I had conversion disorder and Munchaussen (that I was poisoning myself to get attention). I had to go to NIH to get a real diagnosis and then see Dr Grubb to get the proper medical treatment. I have been a research patient since 2003.Being a research patient is very demanding as is takes a lot of my time and it makes me physically sick. As you know I have to be tilted for scientific purposes and I feel sick for days afterward.More than half my extended family has POTS and NCS and I accompany them on their appointments to make sure that they don't get the mistreatment that I got for 30 years. Many of them have now my doctors and we are getting known in the medical community.Last year I was in the hospital for 3 months and I almost died twice because the doctors were playing with my meds and made mistakes. After that I was a total wreck and they wanted to send me to a nursing home for the rest of my life as I could not wash myself or feed myself and was on bedpan. I fighted to get rehabilitated and convinced them as I was their first case *** POTS and NCS.So I was in rehab for a month and when I was sent home I could not wash myself. I took me 3 months to be able to wash myself. I worked hard to be able to get my independence back. I really did not want to go to a nursing home because they have such a bad reputation here.The good news: I have been syncope free now for 15 months and I have had no episode of paralysis since then. I have not been in my powerchair since May of 2007. I started to go on a recumbent bike on a bicycle path once a week for 3 weekd and I still go to rehab twice a week to rebuild my muscles that have been atrophied by 7 years of powerchair and being bedridden.Lesson learned: Never give up even when the doctors tell you that there is no hope for you, that you are a dead end case, that you are making it up or that you are a nut case. Fight for yourself and rely on your gutt feelings. I don't know how long I will have a remission but I will certainly enjoy the time I have to do more normal activities.Love you all Quote Link to comment Share on other sites More sharing options...
lloppyllama Posted June 21, 2008 Report Share Posted June 21, 2008 Thanks for sharing your story, thats quite the long hall you have been through. I hope that your remission lasts a long time! It is very inspiring!!Happy early Birthday!!!Mary Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted June 21, 2008 Report Share Posted June 21, 2008 WOW! I did not know (or remember!) your powerful story, Ernie.Thanks for sharing and for being there for other patients. I am so glad you are not in a nursing home!!!!!!!!! and are able to get out a little now.Happy Birthday! Quote Link to comment Share on other sites More sharing options...
Rachel Posted June 21, 2008 Report Share Posted June 21, 2008 Ernie,Thanks so much for sharing your story. I'm sure it will be an encouragement to everyone. Good for you for continuing to press on despite the overwhelming odds and lack of support from doctors. Have a Happy Birthday!!! Rachel Quote Link to comment Share on other sites More sharing options...
Maxine Posted June 21, 2008 Report Share Posted June 21, 2008 Happy Birthday Ernie! You are certainly a gift to us for all you have done to get awareness out there, and your participation in research. What courage you have!Your birthday is a day after my son's birthday.I hope you are able to stay in remission.HUGS, Quote Link to comment Share on other sites More sharing options...
mkoven Posted June 21, 2008 Report Share Posted June 21, 2008 Happy birthyday, Ernie! That is such an inspiring story. Quote Link to comment Share on other sites More sharing options...
pat57 Posted June 21, 2008 Report Share Posted June 21, 2008 Thanks Ernieand Happy Birthday Quote Link to comment Share on other sites More sharing options...
Maggy Posted June 21, 2008 Report Share Posted June 21, 2008 Happy Birthday Ernie,It was lovely to come on line and read a positive story in that you have come a long way in the last 7 years, well done for all the hard work you have put in, not only for your self but for everyone else.Thank you. Quote Link to comment Share on other sites More sharing options...
Carly87 Posted June 21, 2008 Report Share Posted June 21, 2008 Happy Birthday, Ernie! Your story was such an inspiration. It's just what anyone needs to push through those hard times. I'm new and I've never heard your story before, so thank you very much for sharing!HAPPY BIRTHDAY! Quote Link to comment Share on other sites More sharing options...
goldicedance Posted June 21, 2008 Report Share Posted June 21, 2008 Ernie,What a lovely and inspirational story to have shared with us. While I have been a member for several years, I never heard your story before.I hope that you have many more birthdays to come and that your remission lasts for many a year.Lois Quote Link to comment Share on other sites More sharing options...
Tammy Posted June 21, 2008 Report Share Posted June 21, 2008 Hi Ernie,Wishing you a wonderful birthday! Thank you so much for the hope which I really need right now. I keep hoping to be more functionable at some point, but than I try to do more than lay in my recliner and get sicker, so lose hope but maybe someday I'll find a doctor that won't give up on my situation. Take care,Tammy Quote Link to comment Share on other sites More sharing options...
momofsara Posted June 21, 2008 Report Share Posted June 21, 2008 HAPPY, HAPPY BIRTHDAY ERNIE---- Thank you for sharing you story, you are true inspiration to us all. Hope you have a wonderful day Sunday and many, many blessings to you. Susan Quote Link to comment Share on other sites More sharing options...
Mary P Posted June 21, 2008 Report Share Posted June 21, 2008 Happy Birthday, Ernie!!It has made my day to open up your post and read your heart-warming story. I've often wondered what your story is because over and over you have shown your support for others. You have a kind thought for everyone who turns to this forum to share what's happening in our lives.I pray that your remission becomes, year by year, a lifetime remission. You have shown great courage and determination in getting to this point.Mary P Quote Link to comment Share on other sites More sharing options...
P SUDIK Posted June 21, 2008 Report Share Posted June 21, 2008 Thank you Ernie,and Happy Happy Birthday,Love Pat Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted June 22, 2008 Report Share Posted June 22, 2008 Happy Birthday Ernie. I am so glad you are experiencing remission now. Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted June 22, 2008 Report Share Posted June 22, 2008 Happy Birthday Ernie!And hoping for many more in remission!!!!!Angela Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted June 22, 2008 Report Share Posted June 22, 2008 Ernie,HAPPY BIRTHDAY!!! I hope you have a GREAT one! You deserve it! Thank you for sharing your personal story with us, it is very inspirational and moving story. I know it must be hard to look back on it all, and then share it with us, so thank you! I hope everything continues to move in a positive direction for you! You have made great strides, I know I can not even imagine what hard work and patience etc. that took. Thanks for all you do to help others!!!! We appreciate it!!!! Quote Link to comment Share on other sites More sharing options...
lalalisa Posted June 23, 2008 Report Share Posted June 23, 2008 Ernie,Happy Birthday!! Your life is a blessing to us and it sounds like many others as well. Thanks SO much for sharing your story....I found it very encouraging. Take care, Lisa Quote Link to comment Share on other sites More sharing options...
gertie Posted June 23, 2008 Report Share Posted June 23, 2008 Happy Birthday Ernie! Hope you stay in remission forever. Quote Link to comment Share on other sites More sharing options...
JenniferInOhio Posted June 23, 2008 Report Share Posted June 23, 2008 Hi Ernie - thanks for sharing your story. 15 months of no syncope- that is GREAT!My birthday was Sunday too - hope you had a great day! Quote Link to comment Share on other sites More sharing options...
Jordan5815 Posted June 23, 2008 Report Share Posted June 23, 2008 Happy Birthday! I'm happy that you are doing better as well! Go have some fun Quote Link to comment Share on other sites More sharing options...
Ernie Posted June 23, 2008 Author Report Share Posted June 23, 2008 My dear friends.You are all so sweat and caring. Thank you for the kind answers.Yesterday I had a nice day. My friend and I went to my favorite restaurant, then we went to see the movie: Get Smart, which made me laught my head off. Then we went to the beach and did a bonfire. It was a perfect day.I feel my body will heal some more but I don't know if I will ever be able to work again. Whatever life holds for me I am happy with the progress I have made.I am continuing to see researchers to further my improvement. I will keep you posted when I get more good news.LoveP.S.: My belief is that if I am not in the final phase of death (ie cancer phase IV) there is hope and somewhere there is at least one doctor that will be able to help me. So, I will find this doctor. I do find doctors that help me climb the stairs step by step. It is a long process. Never give up!!!!!!!! Believe in yourself and in your resources. Quote Link to comment Share on other sites More sharing options...
nadine Posted June 24, 2008 Report Share Posted June 24, 2008 thanks for sharing---- I am months behind on reading posts and learning about all the new members, but it is so good to read an encouraging post from a long time member. Sounds like your bday was wondeful. Quote Link to comment Share on other sites More sharing options...
corina Posted June 25, 2008 Report Share Posted June 25, 2008 dear ernie,i am so very happy for you and am very glad that you are able to celebrate your birthday (or should i say: life?!) again. i have learned so much from you, but what helped me most is that i've learned from you that perseverance always pay off. i am glad that your birthday was such a nice day for you!!!!love,corina Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted June 25, 2008 Report Share Posted June 25, 2008 thank you ernie for sharing your story! ernie i am so very happy to hear that you have not fainted or paralyzed in so long and that you are getting better.. that is fabulous!!!!!!!!thanks you for giving us all something to hold on to..your and inspiration ernie!much love and lots of hugslinda Quote Link to comment Share on other sites More sharing options...
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