It was so nice to hear my sister with a little cheer in her voice. Not that she is never cheery, but this day she was beaming with pride. She has 2 incredible boys. One 14 yrs. old and one 6 years old. Both of my sisters have done great jobs in the kid department. But at the moment, Aunt Jill is bragging on the first-grader. My sis had a meeting with his teacher and apparently he has met all requirements for first grade and she is giving him things to challenge him while at school. He loves to read and computers. I’ve got to come up with a great challenging gift for Christmas. Any suggestions?

Up early to drink the rest of my goo four hours before the procedure. Goo is down and now I’m just waiting. I have to get ready, but I’d like to let Barry to sleep a little longer. We need to leave by 7:30am. I hope the PET Scan is just a scare. I’m a little terrified of what the good doctor is going to find, but it’s in God’s hands and I need to quit worrying. I should not be afraid. I need to relax. With Cowden’s Syndrome the unknown can really un-nerve you.

Just when life is feeling good around the house, my mother hit me with this last night. She had actually made a loaf of cornbread and misplaced it. It was actually on the counter right in front of her. She actually went to the trouble to make a second loaf. She now has enough cornbread to feed the neighborhood. I can’t help out, I can no longer swallow cornbread without choking. Barry is watching his waist-line. He is thinner than he’s been in years and is watching what he eats. Cornbread will not be kind to your waist-line. His answer to mom’s dilemma is “I hope she’s hungry”. No help at all.

Since his stroke, Barry went from a serious all business kinda guy to one that you can never tell what will come out of his mouth. He can be hilarious and then there are times when I just have to look at him and say “huh?” He’s so cute. Between the three of us, life can be interesting around here.

What do you tell your mother when she asks “what is wrong with me? I can’t keep up with anything.” All of my answers involve a physician and the possibility of more medication, both of which she hates. So………………………..What do you do?

For the past two+ years, I have endured injections into my vocal cords to control twitching from palatal myclonus (spelling).
You don’t really think about thing like singing and talking, until you can’t do them anymore. I grew up singing in the choir at church and the chorus at school. I loved to sing. I loved being in the car alone, radio blasting, singing my head off. It was even more frustrating not being able to speak properly.

BUT GUESS WHAT? MY VOICE IS IMPROVING AND I AM SINGING IN CHURCH AGAIN, WHICH MEANS…….NO MORE BOTOX! WOOOOOOOOOOOHOOOOOOOOOOOOOOOOOOOOOOOO……..I still need it in the strap muscles beside my esophagus, but no more painful injections to mt vocal cords. That word I have learned to hate, TIME, is finally paying off. What is that saying about patience?

Guess what? I figured out why. I stood my ground and refused to come off one, but I came off the Baclofen totally. My dry mouth was gone, but I could clear a countertop with my left hand without trying and my left leg started doing circles with every step I took. I had to have someone with me all day because my eyes were so bad. In the middle of my treatment, I was transferred to another neurologist that felt he needed to undo everything the other neurologist had done in two years. The self-professed “brilliant Botox specialist of the clinic” made the statement to my new doc that he did not feel I had dystonia. My doctor decided to see and then decided I needed to see a doctor that knows more about my condition than he did. My photo is on this blog, do I look like a guinea pig? I go to these specialist because they are specialist, supposedly.

Honestly seeing the neuro-oncologist was the best idea anyone has had since brain surgery. The full body PET Scan lead to the discovery of a problem I did not know I had. I have discovered since the surgery, I have a little difficult telling when I am sick. I hurt and do not feel well most of the time and I tend to ignore some things if it means a trip to the doctor. Barry and do not have wha you could call a social life. We go to appointments, church, see family and the grocery store. I’m truly not complaining. At this time in our lives, it is a necessity. We do the important stuff. Oh and we hit the gym. Barry is really buffing up. Good for us!