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Back on Disability and out of work...for the 2nd time this decade

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  • Back on Disability and out of work...for the 2nd time this decade

    Hi Everyone,

    My story is very long so I'll just skip to the high points. I was diagnosed with IC 12 years ago. I had to go on Social Security Disability for it and was approved. (Only after 2 denials. Got a lawyer and was awarded disability at the court hearing)

    Fast forward and a divorce happened. My IC was never in remission but it had become alot better with the year off on Disability. I've been working full time the past 10 years, and was even promoted twice.

    Unfortunately I've had to use intermittent FMLA 8 of these 10 years, and ALOT of it. I had to step down from Management because the stress was killing my IC. The past 2 years have been horrific. For the first time I've become bed-ridden during flares this past year for 1-5 days at a time.

    My doctor finally pulled the plug and I'm now on Short Term Disability for 3 months through my employer. We will then move to long term and I'm getting paid through disability coverage through work.

    My question is this....have any of you had to sell your home and move in with someone while on Disability? The first time I was on it, I was married and we did ok. But now I'm single and have owned my home for 7 years. Even with no car payment and minimal debt, I canNOT afford to live in my house on disability pay.

    I'll be selling my home in Nashville, TN and moving to Asheville, NC to live in my mom's house. Her house is paid off so she wants me to be able to live in the house once she has passed on. It was built in the 1920's but she totally renovated it and it's downtown Asheville.

    The catch is this....the house has one TINY bathroom because as we know older homes used to have tiny bathrooms.
    Also, my mom and I have never gotten along at all since I was 8 years old for reasons too personal to write here. But the reasons cut deep on both our ends and we've never really had a relationship.

    She's being very generous and trying to help me. I've racked my brain of other options to live but for now this is it. We're going to put my stuff in storage and I'll bunk up in her guestroom with my Senior Dachshund. (She loves dogs so thank God that won't be an issue)

    We hope to get me on wait lists for affordable housing (low income/disability) apartment in Asheville.
    Some of them are pretty nice so that would be great.

    But I have to give up my career of 25 years, sell my home, pack up, get my whole life moved to NC, and leave all my friends. In the new town I'll know my mom and a male cousin in my age range who I've very close with. That's about it.

    I'm used to getting out to dinner, a movie or the arts/theatre here on weekends that I can medically, and it's always been a huge part of me not isolating too much with IC.

    I've lived in this city almost 30 years. I mean, it's a Very Big Deal what is happening.

    IC had already taken SO, so much from me the past 12 years. I tried so hard to keep working and now this. I'm not trying to have a pity party here, but I'm just in disbelief. I guess deep down I always thought my IC would just go away one day.
    It never did, and if fact got worse from the stress of working as much and as hard as I did.

    The good news is Asheville NC is only a 5 hour drive from Nashville so I can always come back and see my friends.
    But it still sucks, because I don't want to leave my wonderful doctors either.

    Oh and, just fyi "affordable housing" in Nashville, TN has 3 year waitlists, so that won't work out to stay here.

    Has anyone else had to alter their entire life and move in with friends or family due to severe IC?
    If so, please let me know how you made it through the transition and if your IC is doing better once settled?

    I've already had 25 years of therapy to address my mom issues, and can't afford more therapy now so that is not an option either. We're just going to have to try to get along.

    Also, we're buying one of those portable camper-type toilets for the guestroom for me, just in case, because of the one bathroom situation.

    I'm very fortunate to have ANYWHERE to go. If it weren't for this, I'd be homeless for real.

    I have to stay in Nashville the next 3 months because short term disability payments require I see my Dr every week.
    But the down-sizing of my stuff, getting moved to another state, all while dealing with the red tape and records gathering of short-to-long term-to Social Security Disability is a COLOSSAL TASK for someone as sick as I've been.

    My dad passed away suddenly just 9 months ago which was a huge shock, and now all this upheaval.

    I guess I'm just sort of in shock it's all come down to this with my IC, and nervous. I've tried every treatment out there except bladder removal, and the doctors will not do it because pain is my #1 issue.

    My last appointment a team of doctors finally looked at me and said "If we could have cured you by now Jeannie, we would have. We're so sorry."

    Talk about a reality check.

    Thank you for reading my War and Peace Novel.
    "She stood in the storm, and when the wind did not blow her way, she adjusted her sails." -Unkown

    IBS/Endometriosis/Prolasped Uterus/CFS, ME/Fibromyalgia/Refractory IC/Celiac Disease/Autonomic Nervous System Dysfunction (Immune System issues) B12, Vit D deficiencies

    Many surgeries over the years, mainly: Total hysterectomy/Gallbladder & Thyroid removed

    Treatments: Tried all except Interstim, Botox injections and bladder removal. I've never been in remission.

    Daily-Prednisone steroid down to 3mg long-term, Demerol 50mg, Diazepam 2mg
    As needed-Home TENS unit, AZO Standard, Marshmallow Root Capsules, D Mannose powder, Prelief. STRICT IC DIET or I'm bed ridden. I'm under the care of a Pain Management Clinic.

    Was on SS Disability for IC 2004-2006. Back to work 10 years. Annnnd-My bod gave out. Back on Disability as of Aug 2016. WE NEED A CURE!!