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  • #16
    Yes Jess~have your dr give you a letter ASAP so that you can get it into your file. Every single bit helps. Get that letter personally and pass it on to SS, don't wait for your dr to do it because it may never get done or it could get done and lost in the shuffle. When you go to your hearing make sure to have a copy in your purse too~remember, this is a game and they will do everything in their power to make you loose. FIGHT GIRL cussing FIGHT WITH ALL YOU'VE GOT cussing cussing

    sending an angel to sit on your shoulder~
    teri
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".

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    • #17
      Hi Lisa,

      When is y

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      • #18
        hi Hi Lisa,

        When is your hearing date? angel Am sending prayers your way!

        Can you tell me the kinds of things that you shared w/your Congressional Rep, that you think got the ALJ hearing date moved up?

        My Rep's Assistant tells me, that in CT they are 18 mos. behind schedule and unless we are unable to pay our bills (or are in some other dire situation), they're not sure they can make a difference - even tho' I've been waiting for 12 mos., now and first put my claim in 2 years ago. banghead An this is WITH an attorney!

        The good news: we can still pay our bills; the bad news: we don't do much else! It is entirely unfair to have to be in this kind pain with IC AND have to wait on them endlessly -

        To top it off: SSD told the Congr. Asst. that they never received my petition until many mos. after the fact - my lawyer sent it around 9/26/02, but they are claiming "sometime in 2003" -

        One thing SSD DOES have down:
        They sure do know what they're doing, in terms of hanging onto "our money" for as long as possible!

        grouphug Hang in there, everyone!

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        • #19
          "For what it's worth..."

          Hi Jess - It took 1 month for my Congressional Rep's office to contact me; when I did not hear from them after the 1st 3 wks., I followed up on my orig. email with faxes to each of their 2 or 3 offices (local and D.C.) - only then, did I finally receive a phone call.

          To address one of your q.'s, they did "not" send a form to fill out. In my case, I'd sent them a very comprehensive letter at the outset - 'had prayed about it/then just wrote what was in my heart...

          Am still waiting to ultimately see if they can help me get my hearing date. Altho' my letter had stressed that I simply was looking for what the law allowed, re. disability, I get the impression they are not willing to work at "speeding up the process, in general" - ie, CHANGE THE SYSTEM ( scream ) so it doesn't take YEARS, just to be heard!

          Keep us posted -
          Allyson

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          • #20
            hi Hi Donna,

            Was encouraged by your comments, here as well as your "Pt. Story"; had a couple of questions (if you don't mind my asking):
            - About your IC tool kit, which antispasmodic, pain & anti-nausea best help you?; do you take Pyridium for actual bladder infections/or the pelvic burning associated w/IC? Also, am curious about how the IC cushion can help - have never had direct pain from sitting/but can it relieve the pelvic bladder pressure? Finally, saw the travel johns advertised, but cannot imagine getting used to that, if it's the product I'm thinking of(!) - any advice? (Note: I already use Prelief, antacid, ice & heat, Elmiron <1/2-1/3 dose, re. nausea and diarreah>, am careful w/my water source & diet and carry the IC RR Card; also started Axert for IC/fatigue-related migraines, brought on by nocturia.)

            Even tho' we are all so different w/our symptoms and possible complicating conditions, 'have to wonder if it was this extensive tool kit that allowed you to work w/IC all those years...I had to stop working F/T in Feb. of 2000, P/T in June of 01 and am currently seeking SSD - a road I never wanted to go down...

            Allyson

            PS - What do you think it was about your case, that got your Congressional Rep to be able to help you? As we can still "pay our bills", they do not think they have anything to argue on my behalf (still waiting for an AJ Hearing date after 1 year, and first applying 2 yrs. ago).

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            • #21
              For Allyson: The antispasmodic I take is hyoscyamine, but there are many which are just as effective. I would go with physician preference. I currently have vicodin on hand, but I change pain medications frequently because I have a tendency to have bad reactions. I think the time the pillow works most for me is if I'm in the car --- it keeps the vibrations away from my bladder.

              Travel johns are great --- if you're going to be somewhere without bathroom access, they can be a life saver. All I need is a bush to hide behind. Just knowing I have one in my purse makes me feel much more secure.

              I think the main reason I do well with IC is that when I'm having a good day, I refuse to worry about tomorrow. Yes, I know that I might be in pain tomorrow, but if I spend all of today thinking about that, I also lose 24 hours of enjoying life.

              Warm hugs,
              Donna
              Stay safe


              Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
              Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

              Have you checked the ICN Shop?
              Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

              Patient Help: http://www.ic-network.com/patientlinks.html

              Sub-types https://www.ic-network.com/five-pote...markably-well/

              Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

              AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

              I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
              [3MG]

              Anyone who says something is foolproof hasn't met a determined fool

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              • #22
                Hi Donna,

                I appreciate that info...

                Personally, my IC Specialist (Uro) had me go thru' the gammut of medications over the past few years and all but DMSO had "immediate" negative side effects. Also, no one drug/nor combination enabled me to feel well enough to work, either. I'll tell you, that process really wore me out in more ways than one... How long did it take for you to determine which meds were best for your system (eg, more than 3 years)?

                As for making the most of each day, believe me I do. Never do I give into the symptoms - I always do my best to accomplish all I can and always have goals, no matter how big or small. The thing w/me, is that my symptoms are so
                "frequent" - including sleep-loss related sinus migraines or severe fatigue - that I cannot imagine what type of work I could sustain on a regular basis. And due to the fatigue levels, my memory is quite poor, as well (am only 44).

                Just today, for example I was fighting a migraine but had to go out for a medical appt. plus groceries; just when I thought I was doing ok, under the circumstances, I come back from one of the stores to find my back car windows still open - thankfully, my purchases were still there! eek 'Had just taken a new migraine perscription w/in the hour prior and apparently, I was a bit out-of-it!!

                Other days, I have to lie down to avoid a migraine altogether - the signs are clear by now, plus, I'm finding the medication is super-expensive (only 6 tabs for a regualr, full co-pay).

                Can't tell you how often I literally dream of trying to change all of this...plus, wrack my brain on "good days" to make progress in overcoming my limitations.

                If you're ever so inclined, would love to give you a call, sometime; I have the feeling I could learn "something" from you, about mastering all of this/or at least, find the inspiration to keep trying new things w/o letting life pass you by in the process. If there were anything I could possibly do, I would do it - short of multiple hospital procedures w/no garuntees.

                If it wouldn't be an imposition and you'd like to personally contact me, my email is [email protected]

                Take care, and thanks again.
                Allyson

                PS - It's "not that I haven't" made lots of progress and learned to appreciate that experience - I just want to make "enough" to go back to work, like yourself!

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