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Be Still

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About Be Still

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  1. While I'm not on this site much anymore, some of you asked me to keep you updated on my SSDI decision after my appeal in May. Recall, that we were backdating, which may have affected the results. The decision is: No. SSA does consider me disabled now, so I could get SSI (Supplemental Security Income) if I qualified financially (I believe you have to have next to no assets or spousal income). I was told that last year, before the appeal, so I don't know why went we went through this very stressful year leading up to the hearing. In addition, SSA gave a different eligibility date in their denial
  2. Please note that my case is unusual because we are back dating it to when I was last eligible (ten years ago.) We are not having to prove I am disabled now, but disabled then. No decision was made today. The hearing went 'okay.' I liked the judge that I had (video teleconference) and felt very comfortable talking to him. He was semi-amused over my 7 inch thick medical file. I like my lawyer(s), who remain optimistic. Dr. Grubb's records are still not in, and the judge wants to see them. The judge called a vocational expert witness, who stated that as a hypothetical case of someone with my sym
  3. Thank you everybody, for your thoughtful replies. I was devastated, but I'm focusing on the positive. I'll let you know how it goes. It feels so momentous, as if you will either finally receive the validation you deserve or will be crushed by more disbelief, invalidation and defeat. It's a very vulnerable time. I have a lot of faith in my lawyer, and that is comforting. Thanks for your support.
  4. In complying with the rules of this site, I will say that I had a very negative experience with Dr. Grubb?s office. My initial experience was positive and I had great hope for a good relationship with him and his staff. I believe Dr. Grubb to be a warm, receptive and insightful doctor, well versed in autonomic difficulties. Unfortunately, my experience since has been fraught with communication difficulties that have proved frustrating. Today I was devastated to learn that I will be receiving NO assistance from their office with my SSDI claim and my hearing is coming up on Wednesday. This was t
  5. I'm not an expert, I'm newly dx'd with EDS and trying to re-define my entire life in light of that. I have this pain problem with 20-30 waist-high compression hose and in addition: bruising at the knee and elsewhere from them. Since I have the bruising with it, I am assuming it's all an EDS thing, I have the same knee problems with one pair of stretch jeans I wear. I didn't have the problem with 30-40 knee-highs and felt I had no real help from them, either. I have read that people with EDS do not like tight anything on their body, and I have to agree.
  6. Major constipation that nothing will help sounds like a big pain! And it sounds like you've already tried the usual things to make progress. My condolences! Just in case, though: Constipation can be due to: ? Lack of fluids ? Lack of fiber ? Stress/anxiety ? Gut motility issues (See GI doc) ? Wrong eating for your body (Sometimes, something as simple as adding daily prunes, watermelon or beets can help, as can reducing simple carbs, which often lack fiber.) ? EFA imbalance (EFA=Essential Fatty Acids; you could try fish oil, Flax Seed Oil, or other choice) ? Nogoodreasonwhatsoever Constipation
  7. 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 swall
  8. Understand I've been reading lots about EDS and aneurysms, so I'm a little brain washed, but repeatedly I see warnings that sudden stomach (or flank) pain should be checked out. Realistically, it could be symptomatic of a duodenal ulcer or pancreatitis. Did you call your doctor?? Are you still taking your meds for it? I hope you get some relief and it doesn't interfere with sleeping!
  9. Sounds like you're on the right track, you're doing a good job. That was a great response from the lawyer. (I assume he discouraged you from trying to find work?) I hope you find a way opening up before you on how to manage with no income. Sorry you have this challenge.
  10. *sigh* If you haven?t read the article here, on careGIVING (not careTAKING), it?s helpful. http://www.ndrf.org/DavidLevyPres.htm A quote from the article: ?Now to the issue of caregivers, care receivers and intimacy. A delicate subject, one that underlies? ?normal? healthy relationships and one that is greatly imposed upon by Dysautonomia. . . .? It tackles the ?big three: love, intimacy and sex.? Not only does it give us a peek into our SO?s world, but it also offers comfort and suggestions. I agree that going from being caregiver to being care receiver is a huge hurdle for a mother. Some of
  11. Opting out on the George Clooney home care deal. (One less wilted lady for him to worry about.)
  12. A detailed brochure for doctors sounds good. I'd like to add that it contain information on the possibility of medication intolerance, so we don't get treated as medication-phobic people and get demeaned, bullied or treated like children who need to be convinced of the safe history of a particular drug. *sigh*
  13. Wow! What a positive experience. Glad it went well and gave you some peace of mind. It was great to go in so well prepared.
  14. Yikes! Janine, that is so scary. I'm glad that you are doing better, but it's frightening to think we could have lost you simply from a test. We are all so sensitive!! Hang in there, let the mountain heal you, and stay the heck away from hospitals for awhile!
  15. Being sick and all alone is just about the worst thing. Back in the days before miracle drugs, so much of what was done for a patient was just 'attend' them. Some one sat up with you at night if you were sick, doctors came to the house. We've lost so much by just drugging people and pushing them through ERs. You used to be able to get a back massage to get to sleep in a hospital! But, no, now you get a nasty pill and a cup of cold water (along with the lights, noise and bustle.) Hospitals used to have signs that said "Quiet, Please"! I want to live at the time where someone with my sx (given t
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