Sunday, July 24, 2011

End of Week Four

I feel good. My mouth is a wreck and I am still depressed whenever I try to eat anything because it tastes like absolutely nothing, but I still feel good. Considering what I am doing and the nasty crap going through my cells and bloodstream, I feel a lot better than I thought I would and better than the doctors said I would. I don't know if it's just a matter of time and it hits me like a boulder, but so far I'm doing ok.

I have been trying to describe, even to myself, what 'nothing' tastes like. How do you describe the lack of something? I guess it would be like trying to describe a flavor to someone who hasn't tasted it. How would you describe banana to someone who hasn't ever tasted banana? It really doesn't taste like anything else, so you can't say, "It's similar to...".

The problem is that there is nothing. Some people have described it as being like eating straw, but even straw has a flavor. This is the total lack of it. This is actually the hardest part to deal with. I said it was depressing, but I'm not depressed. I'm annoyed and, well, kinda pissed. I can deal with burns and sores and losing my hair in weird places (all on my head, children), I can handle fatigue, though I admit I'm very glad there's no serious nausea, but I wish I could taste something.

I've found a small consolation. I have never like Campbell's chicken noodle soup. I've always felt like the broth was not legit, like it was too greasy or too golden or something. I'll probably feel that way again when the taste comes back, but I have to say, 'thank heavens for chicken noodle soup'. Heated up just right, the broth is soothing and the noodles are just soft enough that I can chew or swallow and it all goes down real smooth. It's probably that extra chicken fat I would have complained about. I don't know, but I swear I could almost taste something.


Ellen ♥ CardMonkey said...

Dear Guy: I stumbled across your blog when a friend referred me to the CMS site. I came expecting more Copic stuff, and stayed transfixed -- actually, I read back to the long while ago that you first had your cough and you were delivering for Pizza Hut.

Perhaps I am a medical voyeur or just a compassionate soul who feels your pain and especially the damned frustration with the whole medical process and the blithering idiots who are hired and elected to right our health care system. Much as I would like to say it's a cluster #&$* of a problem, it seems to me that it's centered on the greed of the insurance whores (oops, I mean companies) who call themselves "nonprofit" and still post ginormous profits annually. Argh.

My husband went out on disability 2.5 years ago and (woot-woot!) he had short-and long-term disability insurance that said the benefit was up to $1 million. We fought for a year for it to kick in, and yup, while it lasted, it paid the mortgage and not much more. Six months into getting the insurance, hubby was let go of the company (no tickee, no laundry!) and so we could opt into the "COBRA" health benefits ...

$1,875/month for husband and wife. No joke! So we paid it ... and closed out the 401K to pay the mortgage. After all, when you're disabled, the last thing you need to do is not have health insurance.

And sure enough, he had two life-threatening emergencies in the first year ... Last Rites twice ... and he beat the odds. Two major surgeries and one minor surgery in the year following. With mortgage money running out this year, I moved our insurance to another I thought I could get cheaper. $1580/month. We were dropped within 4 months, long story. "COBRA" offered -- $1900/mo. We have 'til July 31 to say whether we're in or not, but in the meantime, have been swimming in the risk pool, hoping that we have no maladies as we come up as "uninsured" now. We each lost a chunk of a tooth in these ensuing months, and have paid cash at the dentist. I am diabetic, and my monthly insulin costs $225/mo. I have about another week's worth and then I'll just do without for a while and see how it goes. I got a new job and health insurance will finally kick in, on September 1. I HATE this limbo!

But none of it ... none of it ... compares to your struggle and strength you've shown through it all.

What I really wanted to tell you too is how much I LOVE your art, particularly the style of the painting of the long/blonde haired woman's back wearing the royal blue skirt ... I'm sorry, I don't remember the title ... on your Etsy shop. I hope to invest in some of your art in the not-too-distant future, as soon as my life gets turned around.

I chuckled too at the description of your ex-wife telling you to "just paint" as if it was easy to sell art in a tough economy. My sister is likewise talented; she gave up her brushes when she married an artist whose work she saw as "better" than hers, saying there couldn't be two artists in the family. So sad. I have two of her watercolors framed and hanging in my home -- it's such an honor to have them!!

Anyway, I'm sorry to ramble! I wanted you to know how deeply you touch even those you don't know drop in and follow, and pray for your peace and comfort. {{HUGS}} to you on difficult days.

Ellen ♥ CardMonkey

Guy said...

That painting is called Back to Good.

Thank you so much. I sympathize immensely with your insurance problems. While I understand that insurance is a business and they can't just give their services away, I also can't understand the notion of letting people just fall away to live or die based on whether they have money or not. It's a real tragedy that needs to be addressed and the hard-heads of this world don't see it until it's on their doorstep. There needs to be a better way to provide help for everyone. This country needs to find its altruistic nature again. You know, that one that everyone says they have, as "Americans in the greatest country in the world! RAWR!", but no one seems to to really actually have it. It's all "every man for himself".

Your sister should paint. If there's one thing I've learned; there is no "better". The paintings I like best of mine, no one wants, and the ones I like least are everyone's favorites, and I'm constantly surprised at what people are drawn to in other artists.

Good luck in limbo. I hope you move up and out soon!

Kathie ~ Beary Wishes said...

Guy, I'm sorry I haven't been around lately.
I'm happy to see you are keeping busy and getting back to your old self! I cannot image what you are going through but am happy that you are underway to a full recovery! I know what you mean when you cant taste anything tho. You are a good person and very blessed!
Your paintings are amazing, you are so talented. Thanking for sharing them and your journey with us.
Hugs, Kathie

Guy said...

Thank you Kathie. You're sweet to say so. I appreciate the good thoughts very much and wish I could somehow repay all the wonderful people who have taken the time, like yourself, to just offer kindness. There's too little of that in the world lately.