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  • Teri
    replied
    sunny~I am sooooooooooooo glad that your son is in remission. It's so great when that happens! I had one that lasted a little over 6 months and it was great!
    Jane is right about the SS....you do have a trial period.

    wishing you and your sone the very best~

    Leave a comment:


  • sunny
    replied
    Donna,
    Thanks for being there at a time when I was sooo full of questions...this board has been a God send.
    Brenda

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  • ICNDonna
    replied
    Brenda, I'm so happy to hear your son is improving.

    [img]smile.gif[/img]
    Donna

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  • sunny
    replied
    Jane,
    I have been so hesitate concerning posting on this board what helped get my son's bladder pain under control. First, we have been scared that the benefits of the dmso2 solution would not last. Second, I've learned that what works for one may not work for another ic patient. Just know, that my son went through every treatment and medication available before we looked into the dmso2 solution. As his mother, I was dedicated and devoted to helping him find something that would work. Believe me on a prayer we flew from our state to Portland, Oregon to see Dr. Jacob (who has now retired) Dr. Jeffery Tyler now sees his patients. My son began to instill the dmso2 solution Jan. 2001 and in August began to drink the oral dmso2. It is our opinion this solution began the healing process to his damaged bladder. We think he is in remission. Thank you for your reply as to him working without losing his benefits...he was even afraid to call in case it would "flag" a negative response. Any other questions regarding the dmso2 solution feel free to email me at [email protected]
    Again, thank you for your
    reply
    Brenda

    Leave a comment:


  • JaneP
    replied
    Hi Sunny,
    First, I want to tell you how great it is that your son is feeling better and is starting to get his life back. Would you mind letting us know what is helping his pain? I always love to hear a success story! About his SSI benefits - I was told by the attorney that I used when I applied that they give you up to 12 months to attempt to work without losing your benefits. Those 12 months do not have to be consecutive. He could attempt to work, and maybe after 6 weeks, he decides that he's not ready for a job. I guess that they keep track of how long you work. I know that you are supposed to let them know when you retun to work so that they can keep track of how long you keep a job. I haven't worked in two years, and have been receiving SSI benefits for a little over a year. I haven't tried yet to return to work, but sure hope that I can someday. You could call your SS office to get the information about returning to work. Also, in the paperwork that your son got when he was awarded benefits tells about returning to work. Good luck and let us know how your son is doing.

    Leave a comment:


  • sunny
    started a topic SSI

    SSI

    My son, age 25 was granted SSI disability funds because of the severe pain he "was" in. His ic came in July of 1998 and he applied about a year and a half ago, his pain doctors were very helpful as he received the approval for SSI on the first try. My son has been receiving SSI for about a year. Anyway, my son's bladder pain is at a very low tolerable pain level..(he tells me) and is completely off pain medicine. My son's appeal process is coming at the end of this year. Appealing is quite out of the question as he has been able to return to college and is slowly getting his life back. No more long drives to the pain doctor 3 hours away and hasn't needed to see the Urologist since 6 months ago. After 3 years of debilitating pain he found a treatment that worked! We are crossing our fingers that this "window period" since last September will last! Question: Is there a "trial period for my son" to "try" to work..or is that just totally out of the question. Has anyone tried to work...or is it tooo much of a risk, he hates to give up the SSI too soon for fear the bladder pain would come back on him he believes he needs more time to make sure. He would hate for the Disability Department to jerk the funds from someone who was just "trying " to work. We are just praying that the bladder stays as good as it has. Just wondered if someone had a similar situation.
    Thank YOU,
    From a very grateful mother
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