17 July 2010

A Heartfelt Thanks!

I’d always considered becoming bald and ugly like my brother as a fate worse than death. But I’ve been losing a lot of hair lately so guessed it was inevitable. And I knew my legs and arms were getting thinner over the months because of all the exercise I got from my job, even though the heavy chest pains worried me some, the Doctors kept telling me there was nothing wrong with my heart.

In fact everything looked perfectly normal for an eccentric, wacko Brit like me. Aside from my usual problems—the voices in my head, the purple rash which I’m not going to say where, and the tendency to hunch over the PC like it was a demon dwarf bringing beer from the local bar—but, hey, I’ve had those problems for years. And everyone has to have something to complain about or life isn’t worth living, what?

Honestly it’s hard to tell how long I’ve genuinely been worried, and tried to talk to various medical and non-professional people about what I was seeing. Mostly to be ignored, alas.

So when, after the thousandth-thousandth ER admission into the hospital, I was finally told my pancreas was functioning at a level so low it was practically dead, it came as something of a shock. Perhaps even more disturbing was learning that having a non-functioning pancreas meant my body was no longer absorbing the protein I needed from the food I ate. So it was taking it from a local storehouse stocked with the delicious must have molecules—my muscles (of which, alas, the heart is one).

That explained a lot. The thinning of my arms and legs, the awful cramps I was getting, the loss of hair (turning me into an ugly bald guy like my brother) the constant exhaustion and the increasing heart pains. For the last year or so at least, my body has been eating my muscles away like they were gourmet candy with a soft gooey center. Yum! Well, if you’re a part of me that needed protein anyway it was probably very yum.

My doctor was very positive about it. She’s known people without a pancreas who have lived for years.

Let me rephrase that.

She’s known people without a pancreas—and very good medical insurance—who have lived for years.

Of course the key phrase in that latter sentence is the one which clangs the clanger and dings the bell. Working as a cashier at Meijer’s doesn’t qualify as a source for a good medical insurance. (In truth I had to relinquish the coverage after my first year since their insurance was actually preventing me from getting medical coverage for my diabetes and pancreas treatments.)

And the recommended treatment for a lack of a pancreas is good, many folks around the internet have reported living a fairly normal life on Ultrase. Although I will have to take it as a lifetime regime, without the treatment the long term prognosis isn’t good.

The only kicker is that the cost of one month’s prescription of enzymes is more than my week’s wage. Certainly not something my wife and I can afford on a very tight budget. So we’d hit the end of the road, and it was a rather bleak looking one. But then bleak roads often have some amazing turns, and this one has been as full as surprises as it has fears.

While we wait to see if I can qualify for prescription assistance from the pharmaceutical company; our friends, fellow writers and sometimes almost complete strangers have stepped up and found ways to help me afford the—literally lifesaving—medication until a decision or alternative supply is found. From the simple expediency of sending cash, setting up a donation site and even making plans for writing and dedicating an anthology to help raise funds for my treatment. These are all things we hadn’t expected to see

All I can say is my wife and I are overwhelmed. To Jean Marie, Carolan, all the writers at the Beyond the Veil blog and everyone who has helped us in whatever way they can we are extremely grateful and I don’t know if we can ever repay the kindness you’ve all shown. You’ve given us some kind of hope that things may work out, that I may get to write some of the gadzillion novels that are bouncing around in my mind.

And having hope for the future, and in particular not turning ugly and bald, is probably the best news we’ve been given. Ever.

Thanks for everything. Please keep us in your thoughts and prayers as this situation is by no means resolved as yet. Until I can find a way to acquire a lifetime’s supply of the medication my life is simply on the line.

We will keep you all posted. Hopefully the news will be good.

S.J. and Tree


Shannon L. Arrant said...

Having my own medical conditions to contend with, I know the value of hope, loving friends, and prayers.

An old Irish blessing for you:
"May you see God's light on the path ahead
When the road you walk is dark.
May you always hear,
Even in your hour of sorrow,
The gentle singing of the lark.
When times are hard may hardness
Never turn your heart to stone,
May you always remember
when the shadows fall—
You do not walk alone."

Jean Marie Ward said...


Cheryel Hutton said...

As an "almost stranger" and someone with her own chronic medical issues, I am honored to do what little bit I can to help. (((SJ)))

Take care and keep writing!