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Everything posted by Noreen

  1. Lette- So glad you were able to enjoy some of the day with your friends. Your signature states you are on 7.5 mg midodrine daily. Is this once a day? I ask because your low blood pressure would seem a good indication to up the midodrine perhaps to 10 mg 3 x day. hope you are resting well after your excursion.
  2. Wonderful that the appointment was good and you survived the long day. Re: your HR and BP journal. What frequency/timing do they have you doing? Any positions - sitting, lying, standing?
  3. Tinks- What meds are you on?
  4. Bev Ray- I understand why you sent the e-mail and it was long overdue. It would be nice if the sibs helped for an hour or two a month. Your husband's reaction will blow over with time. I did want to mention that you should make note of what is going on when you get these feelings/symptoms. If you are standing, that puts one type of stress on your ANS. And remember, you are not just standing- you are listening, looking, breathing, etc. - simple things that others take for granted can't be for those of us with dysautonomia. Try and analyze what is happening and see if any modifications help - like not talking/having a conversation while standing, avoiding loud noises, etc. Dysautonomia can breed desperation due to all the uncertainty surrounding it. For those of us who have had professional lives and are used to using our brains and research skills when confronted with a problem these diseases can be especially cruel. If you remember "Flowers for Algernon" it is like being Charley Gordon after Algernon, cruelly remembering the brilliance that once was but unable to access even a fraction of it. The variability of this condition is what is so hard to take. Cut yourself some slack and be kind to yourself. Remember to breathe. noreen
  5. home made salty curry... that sounds very interesting indeed What is lego?!
  6. Jennifer- I am so glad that you have been having success with the traditional chinese medicine route. I know you exhausted all avenues within the American medical model and it had to have been beyond frustrating that none could give you significant help. noreen
  7. Indeed the site as home to the community is much too important to lose. One aid to fundraising would be to put a PayPal link on the home page (and possibly at the top of the forum). PayPal has made it easy for nonprofits to use - My link This seems like a fairly straightforward way to start raising money now.
  8. Arizona Girl- I think you have the qualifications to take the reins. Now identifying all the areas /tasks that are involved in order to split it amongst people sounds like the next step.
  9. CMRulz and anyone else who may have missed it - The latest edition of the newsletter "Dysautonomia News" is new available at:http://dinet.org/newsletter.htm . Michelle Sawicki spells out what her problems are and have been with finding time and energy to run Dinet.
  10. Wonderful news! Keep at it, I would put off the walk for a little while, though. Best to stay low as the fall isn't as far.
  11. I also have had this problem. When I told my cardiologist about the fecal incontinence he put me on 10 mg tid midodrine with an additional 5 mg daily if I felt it was necessary. It has helped along with really paying attention to my body. It has definitely hampered my willingness/ability to go out (e.g. shopping).
  12. It would seem that webmaster would be the key role. If I am interpreting it correctly that role in itself has become overwhelming as a volunteer position. Michelle has been a saint to have created this place and to keep it going as long as she has. I would see her pleas for someone to step up and take over and wish that I felt well enough on a consistent basis to do so. DINET helps so many people and so many of us count on it to check in. It may be time to change the model and hire a webmaster. At a guess this cost would be around 5200 annually. To raise this we could consider a tiered forum - free to read with advertisements to the general public, a $10 basic membership allowing posting with ads, $25 and up full membership without ads. The ad revenue would need to be generated in addition to monies needed to keep the forum up and running - currently about $2400 per year, I believe. Please comment and let the group know how you feel about the possibilities I have mentioned and/or your thoughts otherwise on the forum's demise.
  13. I think most of us have the increase upon sitting and another increase when standing.
  14. It sounds like costochonditis - http://en.wikipedia.org/wiki/Costochondritis . Check out the link and see if it fits. I have been battling it for 12 years or so.
  15. Noreen


    Hi Amanda- Welcome to the forum. You are to be commended for keeping up with your education in spite of all the roadblocks POTS plus puts in your way. I am very happy for you that you have such a strong network of friends. What meds does your doc have you on? Or are you able to manage at this point with just increased salt and water? Heat intolerance is a very big problem for me. I don't think I could last in Jacksonville. Glad that you are able to enjoy the beach.
  16. Know just how you feel. The ideal doctor appt would go like this: Patient: I have been experiencing X,Y,Z. MD: I understand completely - you have (insert word here). Patient: Really? So many medical professionals kept telling me it was all in my head. MD: No. Your issues are very real and must have profoundly impacted every aspect of your life. Patient: Thank you so much for understanding, doctor. What do we do now? MD: Just let me get out my magic wand and you will be as good as new!
  17. mwise- When my right plug kept coming out, my neuro-opthalmologist cauterized the tear duct sealing it completely. Now I don't know how many of my dx went into her thinking - I know she mentioned cauterizing another of her patient's with EDS. Also I had plugs for 7 years or so and so had a long history of dry eyes. Still worth considering - I did not think I could feel the plugs but I actually feel the plug in my left eye as the right one is more comfortable. I actually can just use eye wash now when my eyes are extreme instead of the expensive drops - you know for those times you want to remove your eyeballs and soak them.- but they are not as often. Restasis never really worked for me. noreen
  18. Yogini- What type of yoga do you do? I tried to take a yoga class and the bending and stretching caused my HR to go into 140s. The teacher was basically freaking as I tried to explain why I was modifying some poses. It was depressing as I used to love yoga back in college.
  19. Sandy- I totally empathize with the ankle issue. My doc prescribed this one - http://www.amazon.com/ASO-Ankle-Stabilizing-Orthosis-Medium/product-reviews/B000TGUN7A/ref=cm_cr_pr_btm_link_3?ie=UTF8&showViewpoints=0&pageNumber=3&sortBy=bySubmissionDateDescending I had to go to an orthodist for dispensing - I guess to make sure the size was right. I have spoken with many EDSers who recommend this brace. I wore it for about 3 months and miracles of miracles it worked. noreen
  20. Ditto to so many of these descriptions. Not being able to focus enough to read novels is one of the hardest issues to deal with.
  21. With Cymbalta, it is important to keep an eye on cholesterol. It may not be an issue for your son but for others it may be.
  22. (((Bella))) SEnding lots of love and prayers your way for an easing of your symptoms. I wish I had words of wisdom aside from keep hydrated and drink your chicken broth. glad you posted to let us know how you were - you've been missed noreen
  23. Rama I used to use motherwort frequently as a new mother for ease of anxiety. It has helped subsequently now that I know they are adrenal surges. I used a couple drops of the tincture in a glass of water. As info for others, this is a safe herb to use while breastfeeding. Thanks for posting this as I ran out a while back and was unable to find a source that delivers. Then, as happens more to us than the norm, I forgot. There have been a few conversations on the forum about it but I had no luck trying to paste in my search results. tks again, noreen
  24. Very interesting Thanks for posting
  25. I have been on the mega weekly doses at least 4 or 5 times due to low vit D levels. I have been taking a 1000 mg supplement along with dairy intake. The doc's office called earlier this week to tell me to bump it to 2000 mg.
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