With every new day comes an opportunity to continue to make a difference. I am one that grabs those opportunities by the horn. I have to assume that since I am still walking this earth, my job here is not completed. So, I rest, gather all the strength I can muster, and continue to move forward. Since I’m not completely sure what my journey is to include, I accept all opportunities and run with them.
This week has been no different. Although the week started out on a less than promising note with a Monday visit with Dr. Apple, I think it ended on a positive note. I follow up every six weeks with Dr. Apple, my family physician. He noted a small decrease in my weight and reviewed the medical records from both Dr. Rank and my hospital stay after the surgery. He read aloud the findings and after a brief examination, seemed to agree with the findings.
My experience with MSA is that I will have a pretty steep decline, then plateau for a while before the next decline. I think we all agree this last episode has taken a toll on me and I have not and will not bounce back from this as strong as I was before. I can feel the difference and I know the changes are permanent.
Dr. Apple is always, and for good reason most concerned with my ability to swallow and the possibility of aspirating fluid into my lungs. Since most MSA patients succumb to respiratory failure, aspiration pneumonia is a real threat. I had to admit that I am having much more difficulty swallowing and choking on both fluids and solid food have become a part of my everyday life. He has, in the past, brought up the possibility of a feeding tube. I have refused this course of treatment for the time being. So on this visit, he did not mention it, but did suggest something like a sippy cup to help with the choking of liquids. Well, everyone that knows me knows if I am too stubborn to stay in a wheelchair, a sippy cup is out of the question, so Susan has decided that she will get one of those travel coffee type mugs with the small hole in them for me. They are designed to only allow small amounts of liquid through at one time to reduce the risk of burns, but can also be used for patients such as MSA patients that have trouble with liquids. Of course there is also the powder called “Thicken”, but anyone that has used it knows that it tastes awful and I for one will only use it as a last resort. (Or when Susan dumps it in my drink at restaurants and I don’t have another choice…lol)
On Tuesday, Ryan Rushing and I took a trip to Columbus to visit the State Capitol. Ryan is a high school senior and is interested in a career in politics. I had contacted Jennifer in State Representative Jarrod Martin’s office and arranged for us to meet with Jarrod, be his guests in the Gallery during a House voting session and a brief tour of the Capitol after the session. I think it is very important for him to not only see how local government works, but to see how the decisions made locally affect state government and visa versa.
The day started off very early with me meeting up with Ryan at 7:45 am. After a quick McDonald’s breakfast, we were on our way to Columbus. We met his assistant Jennifer and found her to be very friendly and informative. We chatted with her for a while then met up with Jarrod and walked to the House floor where we took the north steps to the Gallery and Jarrod took his seat on the floor. We were introduced as his guests during the session and we were able to watch our government in action.
After the session, we went back to Jarrod’s office to visit with him before he had to head off to his next meeting. He spoke of the meeting and also about the history of the Capitol and the meaning of the individual circles on the floor in the main lobby area. We accompanied the Representative to his next meeting which involved annexation of property close to our cities. We were delightfully surprised to run into Councilman Brian Jarvis of Beaver creek in that meeting. The three of us sat through the meeting then headed off to have a late lunch before heading back home. It was nearly 6:00 pm when we arrived home, but I believe Ryan received a boost in his government education that day.
After a long day like that, I was completely wiped out so Wednesday was spent in bed. I hate days like those. I feel like a whole day of my life has been wasted. As much as I try to get up and function, I can’t. I am so angry and frustrated. I am only 49 years old. I should not have to stay in bed all day, exhausted from doing little or nothing.
Thursday, my sister Cathy arrived to visit. She lives in Jacksonville and I hadn’t seen her since a family funeral in 2007. I had arranged for us to visit Keith Valiquette and the children of the KIND Program after we picked her up at the airport.
The Kids In New Directions (KIND) is a program that started 21 years ago and provides an outreach service to at-risk, undeserved children of Dayton. Their mission is “to feed the mind, body and spirit of the children living in Dayton” through an after school and summer program for children from kindergarten through high school.
I met Keith a year or so ago when he, as a representative of Honeywell Corporation had made a presentation to council on a program to make the City more energy efficient while lowering the costs of providing energy. He shared with my wife and sister how after he made the presentation, I sat up in my chair, pulled the microphone closer to my mouth and very plainly said, “I don’t like change orders”. You would think that would be offensive to a person, but I think he knew I was just doing my job protecting my citizens’ dollars. A few months later, after hearing of my battle with MSA, Keith purchased 50 wristbands and distributed them to the children. He emailed me and said that my story is carried by the hearts, minds and prayers of these 50 children and how they continue to keep me in prayer and even sent me a picture of some of the younger children.
Keith, his wife and Erica Rinehart, the fundraising coordinator of KIND gave us a tour of the facility and showed us the classes and opportunities they provide these children in areas like music, arts, science, math, computer skills, reading, skits and life skills. They showed us the homework help room, and the praise and worship room. They showed us the chart where the children were earning through positive ways a trip to the upcoming circus. Keith and Erica even explained how they pick up the children after school, provide them structured, monitored activities and even provide them a meal before returning them to their homes around 7:00 pm.
KIND is a wonderful opportunity to make a difference in a child’s life and operates solely on federal funding along with private donations. Please visit their web site at www.kinddayton.org to read more about this worthwhile cause.
Friday morning was spent with my sister catching up and visiting some businesses in Fairborn before stopping by the City of Fairborn Annual Employee Awards Ceremony. It was strange being there and not being in an elected position anymore, but what I found was during my time in office, I had not met staff, I had met friends and it was wonderful just talking to my new found friends. Of course, these past two days have now taken a toll on me and I am once again in bed. Exhausted. I hate this feeling of my mind saying go, but my body saying no.
Please pray for all those who suffer daily from chronic diseases. It is a horrible way to live, but they get up everyday and take one step at a time. It may be baby steps, but steps nonetheless.