IntrinsicTina

I miss the days when... I could, physically, use my ipad rewind and fast forward, all by myself.

I continue hemorrhaging people. Stephanie, my Stephanie, has given notice of her intention to end her employment. Thankfully, she gave me notice as well. Tears were shed. I totally get that she must do the right thing for her life. Her Baby Girl deserves to have her mama at home on holidays. I will miss the love and her art on the graduated pitchers. I'm not gonna lie, it's hard to lose good people. People who are there, the ones that actually care. The ones who hug and kiss me (with permission) when I cry. The ones I laugh uproariously with; the ones who tell me off-color jokes and don't mind their language. Seems like only yesterday that I lost Meredith to Magic Mike, marriage, and the midwest, nevermore to hear her sound effects while rolling me over in bed. Lisa also went home to the midwest. Don't they understand snow and tornados?! At least my sweet Sophie moved to California. I see much traffic and smog in her future. Man, she's gonna be a great nurse.

I think ALS is what one gets when one prays for patience. I don't actually recall praying for patience, but I thought about praying for patience. That must have counted. I number among that neurotic bunch of people who believe we have a daily reprieve on our alcoholism, based upon our spiritual condition. Indeed, I've logged over twenty years sober and clean. I like to say that I learned how to pray in my 12-step program, but that is not completely accurate. I learned how to pray as a child in that rout manner:  God is great. God is good. Let us thank Him for our food. Amen. I also learned to say nighttime prayers: God bless mommy and daddy, and Grandma and Grandpa... My foray into Born Again Christianity, in my teens, left me feeling like a fraud upon my return home to a more hedonistic household.  Therefore, I credit my 12-step program with teaching me the nuts and bolts of praying right. Thanking God for all the blessings in my life. Not giving Him my laundry list of

Flop goes my head, muscles have given up the ghost in the left side of my neck. Another day in the life of the ALS patient. I'm not sniveling so much as documenting for posterity. Losing my neck muscles is problematic in the sense that it's difficult for caregivers to place my head properly.  Additionally, caregivers operate on old information; they don't really get the progressive nature of my disease. Consequently, my head doesn't get properly supported. I'm struggling with my toes curling as my tendons contract, my muscles have died. It was so much better when my husband curled my toes! I may have to resort to wearing glamorous moon boots lined in genuine simulated sheepskin.  I spend 99% of my time lying or laying in bed. As a result, the skin at my heels is getting sensitive to pressure and my left knee and thigh are in near constant spasm. Both conditions are painful. It's winter in the Pacific Northwest of the United States, with winter comes dry

Patriots win Super Bowl LI (That is 51 in Roman numerals, Jack!) You can get that 4-1-1 on your twitter feed, FaceBook, Yahoo, television, radio, your Uncle Gary, that obnoxious Patriots fan in the next cubicle, etc. Some people judge the Patriots on star quarterback, Tom Brady, and the whole Deflategate scandal. Who can blame them? I don't want to rehash that debacle in this forum. Where do I weigh in? Suffice it to say, I was rooting for Atlanta. My husband, on the other hand, was rooting for the Patriots, despite making digs about deflating footballs, when New England played abysmally the first three quarters. Neither of us could believe the cred-saving comeback of the Patriots in the fourth quarter!  They actually tied up the game! The first tie game in Super Bowl history and I witnessed it, in the comfort of my hospice room, with my loyal football-loving husband. Worse, I watched the Patriots win Super Bowl LI, when they took the sudden death contest when they scored a

Things that make me giggle... Caregivers who enter my room exclaiming "It smells great in here! " when I've just filled my pants.

I always brightened when I saw you walking into my room. I had faith in your abilities as a nurse. But your smile and midwest, down home, make no apologies wit was a balm to my soul. You are my cat soul sister. I'll never forget your "crack kitty" drawings on my daily graduated pitcher. And the outlandish tales you spun. You brought me a little piece of home with your cat stories of "Diaper",  I felt like I knew him. Thank you for sharing your engagement with me. I could picture you climbing that ladder to find the suitcase, your expectation of finding WWF wrestling tickets was hysterical! I loved it and I love you! I'm grateful for the time I had with you. I hope the midwest treats you well. Have a great wedding and a better marriage! I wish I had met you when I was healthy. Cheers!

I am so frustrated with you. I need to breathe; I cannot breathe when I'm flat on my back. I cannot breathe well without support under my arms when I'm sitting up. You have to learn  how to do my changing routine without prompting from me. I beg you to help me to breathe. I do not hate you and I do not think you are an asshole. I just cannot bear up under the stress of fighting for air.