Tuesday, March 25, 2014

Medical records for Germany

UMMC agreed this week to mail them to me...thank goodness. That will save a little time. In the meantime, I'm gathering the records I already have in my possession from other doctors, as well as my updated history and triggers.

Will keep everyone posted.

Saturday, March 22, 2014

Long Overdue Health Update - 3/22/14

I'm having a hard time blogging, if that wasn't obvious. Things are extremely stressful at the moment, and I'm still trying to recover from the 2014 body infection and paralysis of doom. At any rate, I'm here with a boring update.

Three weeks of fevers, three infections, three antibiotics, loads of cough and cold meds, an ER visit, major paralysis including my digestive tract (lost around 7 pounds), a trip to the docs in Jackson, increased HKPP meds, and I am finally...FINALLY...beginning to snap out of this nightmare. I am back on a walker and even driving a little bit. I managed to attend a meeting today in a nearby city before coming back home and crashing into bed with a migraine and severe weakness. I'm going to have to take my recovery a little easier I guess, but it's hard when I have so much to do. I have been down for literally seven weeks. I was bedbound nearly the entire time, and my aunt has come over each day to help me. She still is, because I'm still unable to do things like laundry or cook a real meal other than using the microwave or toaster oven (which is better than nothing, I realize). She has been a lifesaver, as usual.

My aunt and uncle took me back to Jackson for an appointment last week. I was in a wheelchair, and we decided that in order to bring me out of my prolonged paralytic state, potassium and Inspra needed to be increased. It appears as though I need the increased meds just to be able to function for a couple hours a day. The rest of the time, I'm here in bed trying not to lose my mind. Next week, I'll go to the local clinic to check my potassium level, then it's back to Jackson in April. I'll finally pick up all of my medical records at that time and send them to Germany as well.

I'll try to get back on track here soon. Thanks for hanging in there with me.

Friday, March 14, 2014

New York Times Article: Saving A Future For Those With Disabilities

Saving a Future for Those With Disabilities
By THE EDITORIAL BOARD
MARCH 13, 2014

Back in the old days, when Congress did crazy things like pass legislation, a sensible bill like the ABLE Act might have sailed to the president’s desk. But today, even with a long list of positives — it’s a good idea, solves a pressing problem and has lots of bipartisan support — it’s not a slam dunk, because there’s always a way in Washington to squelch good ideas, especially those that involve tweaking the tax code and spending a little money.

The Achieving a Better Life Experience Act would be a boon for people with disabilities, and for their parents and other caregivers. It would allow them to put money into tax-deferred savings plans, like the 529 plans that parents use to save for college, to cover expenses like education, housing, transportation, therapy, rehabilitation and assistive technology. Advocates say the accounts, called 529-ABLE plans, would be easier and less expensive to set up and maintain than the trust funds often used for beneficiaries with disabilities.

Such accounts would go far to ease the worries of parents who have children with disabilities that require intensive, expensive forms of care. They would also be particularly useful in fostering a saver’s independence. One advocate who has lobbied strenuously for the bill, Sara Wolff of Moscow, Pa., makes that case. She works in a law office and volunteers with the local office of the Arc, the national organization for people with intellectual disabilities. Ms. Wolff has Down syndrome and receives Supplemental Security Income benefits, but cannot accumulate more than $2,000 in assets without becoming ineligible for that aid. A 529-ABLE plan would allow her to work and save and keep those benefits.

Questions about the future of a child with a disability can be a deep source of anxiety, if not anguish, for parents who wonder what will happen after they die. As people with disabilities live longer, it’s only sensible to help them secure their futures. At last count the bill had 342 co-sponsors in the House and 66 in the Senate. That is well beyond a critical mass of support; it just needs a vote. Supporters have been trying for seven years to get the ABLE Act passed. Here’s hoping this is its year.