Friday 3/20/2015 ~ July 2014 and how Obamacare altered my course

     So “Obamacare” a great big controversial subject that I’m actually NOT going to address in this blog despite the title.  I’m going to discuss how it related to me, and how it impacted me.  I’m not here to debate it’s usefulness or it’s worthlessness, not to support it or shoot it down.  In fact for ME it was both a “good and a bad thing” and let me explain why.

June 2014 where I left off was my tests were scheduled for July, and I was in a “holding pattern” on the medical front.  Now both fortunately and unfortunately for me I had been approved (finally) for disability, both a blessing and a curse by all counts.  The curse is that I now had income that disqualified me for Medicaid, which is the insurance that had gotten me to the motility clinic etc.  I was now “forced” to “purchase” insurance through the NY State of Health Exchange and that meant “big changes” for me.  The reality is that there was NO insurance available that I could choose on the exchange that would cover the motility clinic, and I CERTAINLY could not afford to pay out of pocket for specialized healthcare at a world renowned hospital, I couldn’t even pay my electric bill.  So in one quick month, all my progress all my hopes of moving forward and finding treatment, all my gained faith was shot down in one clean swoop.

On the “plus side” because I was not getting any disability for a “full year” I was given enough help through the exchange (the assistance to pay) that I was able to choose a “half-way” decent plan (at least for the rest of 2014, 2015 will be a different story).  So I did choose a plan, I gathered myself together after having my breakdown about the fact that I would not be able to return to this motility program and I started “again”.  I can’t tell you it was easy, it was anything BUT easy, but I was in a flat refusal to allow myself to get uber depressed again and so I fought on.

I chose the “best” plan I could, it was not great but it was better than nothing.  I contacted the motility clinic and explained why I would not be able to get the testing done that they wanted and why I would not be able to return them, and I requested my records.  I found a “new doctor” in my area (a regular gastroenterologist at this point) who was “in my new plan” and I made that first appointment.  I went to that first appointment, records and long long sorted story in hand; and explained my situation.  Needless to say it was a LONGGGG visit, but I did like him he was a nice guy and although he admitted that he had little experience treating gastroparesis; he was receptive to dealing with me so that was a positive.  He agreed to have his office schedule some of the tests that been ordered at the motility clinic, and even had a couple of “new suggestions” and/or things to talk to me about.  He wanted to try another medication for the lack of bowel movements, Lizness.  He also asked me if I had considered medical marijuana for the nausea (this was right around the time of some breakthroughs of medical marijuana in the state of NY).  

    He also told me that that although no one in HIS practice dealt with gastric pacing (stimulation) he did have a colleague who ran a program for it and he would refer me to that.  So all-in-all it felt like even though this was a “set-back” it was not the end of the world for me.  Another thing we discussed during that visit was some “trouble” that I was having with my tube.  Keeping in mind that I have now lost about 360 lbs, I have a great deal of SKIN going on.  A nuisance for sure to anyone, but in my case the movement of the skin would tug and pull on the tube causing it to bleed and be irritated.  The tube had been in for almost a full year by this time and there was no hope for removal in the immediate future, and so he suggested that I should visit a plastic surgeon to discuss skin removal.  Not from a cosmetic standpoint, but from the standpoint that it was causing issues with the tube etc., so that was something new to think about.

So I left his office with a referral to the doctor who deals with the pacemakers, a promise to be called to schedule these tests that had to be cancelled from the motility clinic, a follow up visit in 3-months with him and some things to think about.  I was not “better” and I was still saddened to be forced to leave the motility clinic due to the whole insurance thing, but I was “alright”.  My good days and bad days were just that good days and bad days, some months leaned to more good some months leaned to more bad but I’ve been able to “maintain” my weight within 15 lbs at this point.  When I have bad days I know that I need to feed after I lose 15 lbs, I won’t let myself go any lower than that.  I keep myself hydrated by using the tube even on the worst days; basically I’m “learning to manage”.  It’s still not a “great life” and my “quality of life” remains impacted in a very big way ~ but I’m making it and I have not given up.  Next blog I’ll talk about those “next appointments” with the pacing guy, and yes I did contact a plastic surgeon.  As always thanks for turning in!


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