2:07pm October 1, 2013

My world is going to hell.

And right before the government shutdown too.

It looks from a date involved like it may be a paperwork error. I hope it is. But I fear that may be a very false hope.

But I was approved for awhile but Medicare for home infusion stuff. Meaning my Enteralite infinity feeding pump. MY low fat low fiber high protein Osmolite. And tubes to attach to the Osmolite bottle.

All of that may have just changed. Suddenly they’re denying medicare funding.

I don’t know why. I was not given a reason.

To be very very clear.

I have severe gastroparesis.

That means my stomach is not functional. I cannot take in any nutrition or water through my stomach. In fact my stomach drains so slowly that I require a drainage bag on my stomach almost all day and all night.

I eat entirely by a feeding tube called a J tube that goes into my intestine.

If your feeding tube goes into your stomach, you can feed yourself with a syringe. I DO NOT HAVE THIS OPTION. I REQUIRE A FEEDING PUMP AND TUBING AND FEEDING BAGS OR BOTTLES.

The tubing and bags/bottles must be replaced daily.

J tubes, unlike g tubes, clog constantly. Even with Osmolite and other pre-made formulas.

If I have to switch to blenderizing my food out of regular food, I will clog even more often. This means hospitalizations because I can’t get medication without a functioning j tube.

If I blenderize my food, it will require a high quality blender. And will still probably clog.

Right now ALL my equipment including my feeding pump is rented or paid for by medicare.

If I lose medicare funding for this I will lose all of it.

I live right on the poverty line on Disabled Adult Child benefits.

I haven’t added up all the prices yet. I know to permanently buy a feeding pump alone costs more than I make in a month, and I spend most of my money on essentials.

If worse comes to worst, I may have to resort to begging. Probably to a friend’s bank account or something.

Which is the last thing I want to do. I’m crying my eyes out.

I just told my case manager everything he has to do to give me the best fighting chance he can.

It’s out of my hands. I can’t do most of this fighting on my own. I don’t have that kind of skills.

And the government is shutting down because the Republicans don’t know how to behave like adults.

And all I can do is hope.

What I’ll need if this doesn’t pan out is something along the lines of:

EnteraLite Infinity feeding pump

Tubes for the pump replaced daily

EITHER Osmolite low fiber low fat high protein ready to hang

OR high quality blender (more details if / when I need it) AND daily feeding bags

I may be able to handle some of the daily food myself but the rest no possible way.

Think of me or pray for me or whatever you do. And if this doesn’t pan out, and if you can, please help me. I’m so scared right now. The idea of death itself doesn’t bother me, but dying of utterly preventable starvation bothers me utterly. But however things happen, I’ll deal with it. I always do.

And if it was a paperwork error, and I did unnecessarily scare people, I’m terribly sorry.