Saturday, June 23, 2012

Today I Cried

Today's doctor trip final call: bi-weekly trips to hospital for drip in arm,  nuclear scan of my left femur and hip, chest x-ray, tb test, and chemo by injection. I can take all of that. It was the explanation by the doctor that the insurance, which has me on $620 spend-down per month, might not okay the Zofran (the label drug for the generic drugs that still have me going to the throw-up throne), or the drips, or the nuclear scan. The last time the insurance gave everyone, including my doctor, the run-around, was March of this year. It was two weeks of up and down, "We got it", "The insurance nixed it", etc. I finally hung up the phone, opened my mouth and nothing came out. Just tears falling from my eyes. My friend came over to hug me and she started crying, too. Today, another friend at the hospital, trying to console me, said, "Don't work yourself up. You'll just wear your body out more." Not understanding; only wanting to help. The thing is, I didn't work myself up. I just broke down ...Generally, I don't cry in front of my friends. I usually try to crack jokes. It is only when I've had enough, had too much, that I break down. I never cry in front of strangers. When trouble happened at home and the police where called to the door; I stopped the tears and put on a smile. "Everything's fine officer." They always step around to the door. I figured out it was because other people wouldn't open it if they say them in the peep hole. It got to be rote for me; stop crying, don't show your tears.

Today I cied. I cried in front of my doctor who has worked so hard to help me. I cried in front of strangers waiting for tests to be run. I cried in front of the social worker at the hospital who, after hearing of my story from my friend, wanted to come and meet me "to put a face to the name". I cried while telling them my birthdate, what state I was born in. Cried when I thought of the birth hospital, all the stories of the birth in the elevator- going down, of course- when I was born. The question, Why was I born? went through my head. I stopped crying, though, when the woman taking my x-rays -who had me breathing in and out and turning 'round and 'round until I finally said "I'm gonna faint"-asked, "What makes you think you're gonna faint?" It wasn't until my ears stopped ringing , my skin stopped crawling; that I thought back to that woman's question, "What makes you think you're gonna faint?" What kind of question is that? That point where the cartoon character looks into the tv at the audience with a look of complete wonder. the zen koen, "What is the sound of one hand clapping?" It's the utter stupidity or wonder at the world that makes you stop crying.I sat in wonder. How did I get here? Why did I get to this point? What is the meaning of all of this?  And, ironically, all this crying has made my Sjogren's worse. Now I must not cry. I will not cry. Stay strong and carry on.

Saturday, June 16, 2012

Great video to fill the void. Terrific artist.
Not great lately. Chemo backlash. Will write soon.

If this  doesn't show as hypertext on your browser, please copy and paste to url. You will love the music experience.

Wednesday, June 13, 2012

Secret tip for saving your skin, your wallet and your time.

I must share first a completely ironic story about a frugal living website. I went to this site looking for coupons and nearly clicked on an box touting help with monthly budget goals. But in order to sign up, you are charged $39.99 per month. Thank you but my free database works fine by me.
My secret for saving your skin and wallet is apparently quit a secret. I know this because the woman who helps me take showers after hospital visits has never, in her decades of showering people and raising kids, seen anyone else do what I came up with while working and actually trying to save time in the morning. (Thus this is a time saver as well.) Just take your hair conditioner and put it on your legs to shave instead of buying shaving cream. Then when you are almost done showering, take this same conditioner (which is hopefully the $2 brands) and rub it over your body. Do a quick rinse. No need to use expensive, or even inexpensive body lotion after you get out. Your pours are open in a hot shower so this helps the skin absorb the lotion.
Voila, you are ready to start your day fresh with smooth skin!

Saturday, June 9, 2012

Every blog has a soul.

I need to define why I am writing this blog. First, this blog will be about two things; writing and writing with a disability. They are integrally tied together. Alternately, one works against the other while the other is a grounding force. The disability puts me at, well, a disability. I am often sick and cannot write. But what keeps me strong through the hard times is knowing that I must go on to continue writing as writing has been at the core of "me" since I can remember. It is what keeps me going. I've often wondered why God has decided to put me through not only this disease but the trials in my life, which are many. In jest, and God must have a sense of humor, I have always joked that God won't let me die until I publish at least one of the four books I'm working on. I have a wry and dry sense of humor, honed over many years of bumps and scorching. So 'publish or parish' is a large poster in my mental interior decorations. Along with the war time saying 'Stay calm and carry on". Strength and honor are part of who I am and what I value. So this is a blog about getting through the hard times with steel and truth, and writing. Writing, writing, writing. It will also include, on the side, humor posts, culture posts, tips on daily life I have learned and will share (for anyone and other posts for those with disability). But writing through trials will be the main theme. There are lots of blogs out there; some people see in a negative light. But if you think of each blog being written by a person, having a provenance from a hard won life, then the blogs become to have a soul. The words attached to hands pumping blood to a heart, brain. This is mine; to flesh out what is mere binary digits and 'characters'. That is all for today as I have a swollen hand and am having trouble hitting the correct keys. A minor but cogent problem to add to the overall subject. My best. Be strong, carry on.

Tuesday, June 5, 2012

Hard Day's Night

The Beatles have a song for everything. I slept finally, my brain drained from the pain; screaming in my sleep where I used to laugh. None of us know when we are going to die but it gets a little closer when you are facing down the barrel of the gun that is going to kill you; in my case, the gun is an unseen disease called 'autoimmune disease'. One of the ironies of my life; I have something that attacks my body and causes it to slowly eat away at every cell, organ, bone on the inside. What the normal process of life is but sped up like night lights on a fast photo time lens. When the doctor had first mentioned it to me I had to ask him to say it again and slowly. "Your cells are attacking themselves." blah blah blah; no please how can that be? It was like the game my older brother and sister played with me as a child; "stop hitting yourself". It made me laugh because it was so ironic; the love of irony a gift from God given to me early in life. This game involved the elders taking my arm and hitting my face with my own arm while saying, "Stop hitting yourself!" I would laugh and laugh and it got to be harder and harder to pull my arm away because I was laughing so much; I couldn't stop myself. Well, believe me, I'm not laughing now and I wasn't laughing when the doctor called my work that I loved to explain that "autoimmune" cells are attacking themselves. Speeding up the natural flow of death at a certain percentage (in my case 'aggressively'. ) I don't sleep much now partly from the pain and also what I term the 'pain nightmare': Every time I moved I groaned becoming more and more conscious of the pain. All the more ironic because I pray for relief from the ever-presence of this aggressive beast.

Beauty Is Skin Deep

Why 'autoimmune diseases' are sometimes invisible. 
A few Mondays ago my eyes acted up from the autoimmune process. I had to be taken by a dear friend to my eye doctor who has also performed "needle in the eye" (quite literally) surgeries on me. He is a very good doctor, which is hard for me to say because I hate doctor visits and will avoid them like the plague, so to speak. He is all business. But this day, as he looked into his 'enlarging lens' he said "Your skin is impeccable. So fresh not a wrinkle or mark. It's flawless." This was unusual for him, that's why I comment on it. I wasn't wearing makeup; never do and I'm used to these comments. Though I appreciate them I take them with a wry sense of irony.

Let me explain. I think the people who say these things are very kind, but I don't take it personally. As I see it, if you looked just beyond the skin, they wouldn't be saying it. The comment "beauty is skin deep" applies here. Not in the usual sense. I hold strong my beliefs in being true to yourself and others. loving others as yourself, et al. But just beyond the surface of this serene scape there is a war in full battle. All I can say to these kind-commenting-acquaintances is, "Thank you, that's very kind of you" and move on thinking, "If only they could see inside of me." Such is the autoimmune world. Many times you do not see it. So think again when you judge the skin of someone, good or ill. There is often something that person is battling with that you cannot see.