MotleyLori Posted May 20, 2006 Report Share Posted May 20, 2006 Hello, I am new to the forum and just wanted to introduce myself. EDS hypermobile and POTS, the typical misdiagnosis for years before getting an answer. Just denied SSDI on my appeal, now waiting to hear from attorney for hearing date. Used to be an RN, now happy to be able to make it thru an entire day without a nap. This forum has provided me with much support and hope as I have read posts now for weeks before signing up.Thank you all,Lori Quote Link to comment Share on other sites More sharing options...
Ernie Posted May 20, 2006 Report Share Posted May 20, 2006 Hi Lori,Welcome to our little piece of universe.You are doing the right thing to read as much as you can on the subject.There are many other nurse on Dinet.We are like a family. Quote Link to comment Share on other sites More sharing options...
corina Posted May 20, 2006 Report Share Posted May 20, 2006 hi lori,welcome around. there are lots of understanding people around here. like ernie said: we're like one potsy/dysautonomia family. it is great to "talk" with people who know how you feel and understand the problems we have. i am sorry that you have reason to be here, but it's the best place to be!corina Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted May 20, 2006 Report Share Posted May 20, 2006 Hello and Welcome Lori!It is one of those mixed blessings to be here right? Happy to have you and yet sorry you are here!I am glad you are going to appeal the SSI. Keep pursuing.What do you have to do to manage your symptoms?...and hey, one nap isn't bad! Just be glad you don't need two or three! gosh, although I'm doing better recently, I clearly remember long hours that melted into days of napping!anyway, welcome to the tribe!best regards, tearose Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted May 20, 2006 Report Share Posted May 20, 2006 Hi Lori, I too have HEDS and POTS/NCS. I've been fortunate to continue to work f/t--I work for a public school system, so I'm spoiled by having a truncated day, tons of holidays, and the Summer off. I think that if I'd continued in the private sector, I'd have been fired by now--I spend most of my time off, evenings, weekends and holidays, trying to recover from pushing my body to it's limits.I'm glad you've found support here and hope you find this a welcoming bunch--I personally think we've got a great group of members who are more than happy to share their personal experience and knowledge. Nina Quote Link to comment Share on other sites More sharing options...
Be Still Posted May 20, 2006 Report Share Posted May 20, 2006 Welcome to the challenging saga of trying to reinvent your life, aka having a life without a life. One way to look at it is: it is a challenge, a fork in the road rather than a dead end. How do you use all the skills you developed at work, to find a way to be useful and satisfied without that job? You will develop more skills, and hopefully resiliency, in finding a way to function without all of your previous energy.I, too have POTS and EDS (HEDS for now, likely will test to R/O VEDS,) so it?s like being fragile inside and out. I just got dx?d in my late forties, a pretty tough chunk to swallow. The last time I felt as you describe, happy to make it though the day without a nap was 1985, when I had to stop working. It?s been interesting . . . My SSDI hearing is coming up in eleven days. It?s been 3.5 years, and we are having to back date it, making it more complex. Best wishes to you on your hearing. Quote Link to comment Share on other sites More sharing options...
MotleyLori Posted May 20, 2006 Author Report Share Posted May 20, 2006 Here is my abbreviated story:Life time history of easy bruising/bleeding. Kyphoscoliosis as teen, wore brace for 3 years. Hospitalized with tachycardia as a teen/no cause found. Tachycardia,lightheaded again in 20's. Excessive bleeding with childbirth. Functioned reasonably well, worked greater than full-time. Around age of 30 started have severe fatigue, night sweats, aches, pains. Blown off by many, many doctors who suggested it was mental. Post knee surgery in 99 had large amt of bleeding into leg. Very slow to recover, no energy. Post abdominal surgery in 2003, developed large bleed in subcutaneous tissues. When they were unable to find the cause, I found out about EDS online and the diagnosis was confirmed by 2 geneticists. Then I was diagnosed with POTS last year. I have bad Raynaud's, venous pooling, GERD, nutcracker esophagus, POTS, palpatations, migraines, platelet disorder, osteoarthritis of several joints,chronic pain and the worst - severe and unpredictable fatigue. There are many other symptoms that I have not listed. There were many instances of missed diagnoses and inappropriate care from the medical profession. Unfortunately, I know that this is the typical story, not the exception. I can not give up on trying to find a treatment that works to restore my energy so that I can somewhat live the life I want. Yes, I am trying to reinvent a new life for myself that will not leave me feeling bored and useless and it is not proving easy. I have been denied disability on the first application and the reconsideration. Now I have to wait for a hearing. It took me 2.5 years of not being able to work to even apply as it was not what I wanted to do. I wanted to return to work, still trying to figure out what I can do with any type of regular schedule. Thank you all for welcoming me to your site.Lori Quote Link to comment Share on other sites More sharing options...
labas_2u@shaw.ca Posted May 21, 2006 Report Share Posted May 21, 2006 Hi Lori and welcome!Have you been tested for Von Willebrands? I have had bleeding problems for years (bruising, hemmorhaging etc) Actually your story reads like mine! The bleeding was never identified until fairly recently when my doctor did bloodwork for Von Willebrands disease. Von Willebrands is a clotting factor problem and is usually not tested for because it is hereditary. However, rarely it can be 'aquired' (And we certainly are a rare breed! )Google 'aquired Von Willebrands' and you can see if you feel there is a connection there. There is a simple blood test that measures all the clotting factors. Most people have a deficit of factor VIII . My problem is having too much of factor XI. If any of the thirteen or so factors are out of whack...the clotting 'cascade' does not work properly resulting in excessive bleeding/bruising. My platelets are usually in the normal range so simple bloodtests never showed that although yes, I have the platelets, but they don't work. Prior to this diagnosis I was told I had 'lazy platelets' because they could not understand why I had the full amount but they did not work...... For myself, I have days when they are fine and then all of a sudden, I start brusing and bleeding.... I do have to watch my platelet count because once my platelets did drop quite a bit and was told I had ITP.Don't know if this helps any but it wouldn't hurt to check it out!Welcome and good luck Quote Link to comment Share on other sites More sharing options...
nadine Posted May 21, 2006 Report Share Posted May 21, 2006 Welcome from another newbie! I am learning more every day here- Quote Link to comment Share on other sites More sharing options...
mom4cem Posted May 21, 2006 Report Share Posted May 21, 2006 Welcome! Quote Link to comment Share on other sites More sharing options...
bttrflyamby1981 Posted May 23, 2006 Report Share Posted May 23, 2006 hi...and welcomeAmber Quote Link to comment Share on other sites More sharing options...
Babettegall Posted May 23, 2006 Report Share Posted May 23, 2006 Glad you found us! You'll be amazed at how much support is offered and found here, as I know I did!Welcome to the group Quote Link to comment Share on other sites More sharing options...
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