Missing in Inaction

I haven’t been missing in action but instead missing in inaction.

The last few months have been a slow whirlwind for me – leading me to stop writing for a while. I’m still in early period of diagnosis of the Myasthenia Gravis, a rare neuromuscular autoimmune disease. Since my flare in October, my body has changed dramatically and figuring out what to do next has been a crazy making period for me. At least the diagnosis is confirmed and my neuro is trying to get approval for the next step treatment for me – IVIG. He says it make take 3 months to get it approved so I’m in a waiting pattern for now.

In the past few months, I’ve started the first line med, Mestinon, but the side effects are doing me in while the med is helping only moderately. I’m grateful that some of my symptoms are improved on the Mestinon but I’m not a fully functioning human. And I really don’t want to repeat my recent emergency room visit!

I decided to stop with the wait and see attitude.

I’ve missed so much for over 5 years due to muscle weakness and have had some terrible experiences. One example was the Highland Games last summer. In between the heat, dust and no water vendors, I ended up reaching out to the EMTs just before collapsing. Some water and rest got me going again but it was just not fun. I was using my crutches and just got too tired.

This year I’m going back with water bottles and an foldable power wheelchair. I may even get a wagon to pull along behind me! I received the power chair yesterday and am waiting for it to get charged. It was $2300 and I had to use a 29% interest credit card to purchase it.

I also want to do further genetic testing because there may be a genetic component to this and my Ehlers-Danlos diagnosis is just vague and pretty much not helpful. Add in the fact that my hubby does need hearing aids and the baths needs to be made accessible and our needs have just exploded.

After much consideration and anguish, I started a GoFundMe campaign.

I’ve never asked for help like this. I have considerable pride that I have managed for most of my life. We’ve never had much money and with one year’s exception, never even reached middle class. We have always been caught between full poverty (with government help) and muddling along by simplying doing without.

I’m truly glad to finally get social security and Medicare but like most of US health care it’s not enough. It doesn’t cover any foldable wheelchairs but also doesn’t cover a vehicle that can transport the full size electric chairs. Our little Corolla is just not useful here. But also, Medicare doesn’t cover a wheelchair until the patient is unable to walk inside their home. I’m not there yet thankfully.

And, yes, Medicare does not cover hearing aids or genetic testing.

Oh, and all the things I’ve put into place like smart clocks, pillows, new accessible shelving, etc., of course are not covered. I’m working at getting a grant or low interest funding to make the baths accessibile with one wheelchair accessible shower. Though we really don’t have to have those things now, it is all about safety (hubby has already fallen in the shower breaking a rib) and easing my life to help combat the fatigue and muscle weakness.  I also believe in being prepared – and preparation relieves some stress (which can actually make MG worse).

My story is not unusual in this country for patients with chronic or rare conditions.

There are millions of us with these problems. Millions of people in need. I am glad we moved to Maine and bought this house even though it wiped out all our savings. I’m just thrilled and relieved to be in our own home again. I don’t have to rely on landlords to fix things or make my life easier. I don’t have folks telling me to behave (snicker) or follow the rules. I have more control over my life than many. That alone also made the decision to start a gofundme much harder. I need help but there are so many who need more than I. So many that my heart just aches.

So consider donating to me. If not me, donate to someone else you know better.

If that still makes you uncomfortable, donate to a foundation that helps people though that doesn’t benefit Medicare recipients. We aren’t allowed to get grants or free help from, for example, a genetic testing facility. The last alternative is a organization for researching conditions. My favorite is the Ehers-Danlos Society. We are in the nascent stage of researching this condition that actually was identified in the late 1800s.

Every study done adds a little to the knowledge base. Just recently a survey is being offered by the University of Tennessee at Chattanooga to look at sleep issues among EDS patients. I’m pretty sure I’ve had sleep apnea since age 15 and it makes sense that loose tissues could cause sleep apnea. Yet I wasn’t diagnosed until age 58. The more we know, the more easily we can get diagnosed and get supportive help. There is no cure but the one of the largest problem in our community is the horrible journey to diagnosis which is then compounded by a lack of knowledge of medical practitioners.

One of the reasons I blog is to increase awareness. My personal story is one of many in this country. Note the details of my story but it’s not just my story alone.



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