It's All I Can Do

Archive for the month “August, 2014”

Day 84 – August 22, 2014

Theresa wanted to make sure I left town with a full stomach before we traveled to Eau Claire, Wisconsin. She took me to a restaurant known for dishing out extra large portions. She has really done a great job of making sure I eat well during my time with her. After a gigantic veggie omelet, with potatoes and toast, I was stuffed like a Thanksgiving turkey.

There was an antique auto show going on in the parking lot as we ate. We checked out a couple of the classics. Most of them were from the 1940’s. That is, the cars were from the 1940s.

I’ll sure miss the sound of Theresa’s laughter, her high energy ,her cooking, and those delicious smoothies.

On the way to Eau Claire, Theresa was taking sales calls as she drove; rattling off item numbers like an auctioneer. It’s fascinating to watch a sales pro in action.

Theresa drove me all the way to the Trinity Lutheran church in Eau Claire, Wisconsin. When we got there, Pastor Jim Page and Pat Toutant were waiting.

Pastor Jim, is of course one of the pastors of the Trinity Lutheran church. Pat Toutant is a local businessman and the director of the Eau Claire marathon, which is held in May of each year. Both men are runners.

All I gotta say is, Holy moly Theresa really hit gold finding these two. After a few minutes of introduction, Theresa  and I said our goodbyes and she headed back to Minnesota.

We put my bags in Pastor Jim’s vehicle, and started on the route that Pat had mapped out for us. It was a five mile loop with on some paved trails that went through a couple of parks.  Along the trail we came across a statue of Paul Bunyan and his Ox, Blue. But, don’t tell anyone from Minnesota about this. As the story goes, the ten thousand lakes are the result of Paul Bunyan and his Blue Ox walking around the state of Minnesota.

As we ran, we came across some young college girls that were preparing to go tubing down one of the two rivers in Eau Claire. Pat called out to them and told them about my run and why I was doing it. Then he asked if we could get a picture of me with them.

“Sure,” they said.

I reached into my pocket and pulled out some of my “Its all I can do,” business cards to offer to them.

Then I thought, if they are going tubing then they are probably in bathing suits and would not have any pockets to put the cards in.

After we took a few pics, Pat and I were on our way running again. After traveliing about a  hundred yards  Pat said, “You know, when you and I were young, bikinis covered up something.” “Not any longer,” he said.

“Bikinis?” I asked. “They were wearing bikinis?”

“Yes,” he said.

“All of them,” I asked.

“Yep,” he said. “It’s become a trend among the college students her in Eau Claire.

“And those bikinis reveal more than when you and I were younger?”

“Yes,” he answered.

(Blink, blink) Now, where am I and what was I doing again? Oh yeah, running. And, with a little more pep in my step.

We cruised on into a local watering hole named the Court House for a couple of cold cups of water. In the humidity and heat, and the humidity and sun, and humidity and humidity, it was one of the best cups of ice cold water I have had in this life time.

When we got back to Pat’s vehicle, he made a phone call and got me hooked up with a motel stay. Then he called Pastor Jim to tell him where he could take my bags. A few minutes after Pat got me checked in, Pastor Jim showed up with my bags and brought them to my room where I was cooling down.

Pastor Jim placed my bags on one of the beds, then said, “Here is a bottle of shampoo and a soap container, as he handed them to me.” (They were together in a plastic bag. The way I packed them.) Then he said, “And here’s, … .”

All I could think of was, “What happened?” “Did one of my bags break open?”

Nope, Pastor Jim is just one heck of a nice guy and thought He’d help me unpack. But, I quickly told him the reality of my unsighted world. “I have to unpack, that’s the only way I’ll know where anything is.”

A bit later, Pat showed up to take me back to the park where I met Matt and Jessica for a run. Pat explained the route he and I took, and suggested they run the same route, which we did.

Jessica is a math professor at the university and teaches statistics. A woman after my own heart.

One of the many blessings in losing my eyesight, was that I got to go to college later in life. I loved math and was a math tutor for algebra, trigonometry, calculus and statistics. (Now you know how boring and weird I can be.)

I had a number of math professors tell me that I should consider going on for a PhD in math. I had to use a fairly strong magnifying lens to see the math problems in the books, and used felt tipped pens to work them out on paper. Eventually, I knew that I would no longer be able to see any of this. Working through a math problem in Braille could not possibly be the same as seeing a nice juicy, complicated problem unfold into its result before my very eyes. Weird, huh?

Then I told Jessica this true story.

I was tutoring a blind female friend at Northern Illinois University in statistics. Her professor, who I thought the world of, wanted my student to understand the shape of a bell curve, and what it would look like if skewed left and skewed right. I bought some clay and formed the three curves and “showed” them to her. But, she wasn’t able to grasp the concepts. So I created the three curves out of cardboard, then popsicle sticks then string. Still didn’t work.

I talked with her prof, but she still wanted our mutual student to understand what the bell curves “looked” like.

Out of desperation, I told my student this:

“As a female of the species, when you are standing and you are naked, you have two objects on your body that as you look down at them, they are bell curved. When you are laying on your right side, they are skewed left. When you are laying on your left side, they are skewed right.”

“Gotta it,” she said very convincingly. Then she reached over and touched the clay models I had made and demonstrated her new enlightment. Yep, she understood.

Anyway, back to the run.

Jessica was guiding me. Matt stayed on my right side and came up with a title for his position as we ran. “Human guard rail.” I like it!!

When we wrapped it up, Matt and I went to a Subway so I could stock up on sandwiches. No matter how much I eat for dinner, I still get hungry through the night and need something to hold me over till the mornings.

I got to my hotel and, I definitely needed to shower before dinner.

We had dinner at the restaurant attached to the hotel, and there was quite a crowd.

Being a Pastor is most definitely a 24/7 profession. A woman introduced herself to me and then spoke to Pastor Jim about someone who is struggling in life. Later on in the meal, Pastor Jim excused himself as he saw someone else who he needed to check in with who was also having difficulties.

It was obvious that Pastor Jim is perfectly suited for his chosen calling. He’s the real deal.

11.17 miles
1509.75 total miles run
$6,055.65 total funds raised

 

Day 83 – August 21, 2014

This morning for breakfast Theresa fried up some eggs and, made me another super duper smoothie. Brent picked me up around 8:30 and dropped me off at the track. He did not run with me today.

At 11:00, Kelly, the woman who brought me a bottle of water and a banana the other day, picked me up and we went to Theresa’s and so I could eat lunch. She brought me a barbeque pork sandwich, corn, chicken salad, and fresh strawberries.

We had a pleasant conversation, then she had to go to tend to her children. She asked if there was anything else she could get me and I requested a mocha frappe from McDonald’s.

After Kelly left, I headed out to walk around the neighborhood and get some miles in. I just happened to be near Theresa’s home when Kelly showed up with the substance of my addiction, the mocha frappe. My happiness in a cup. Once I got that down I took a snooze.

Theresa set it up so I would be running with a moms group this evening. She was thinking around 13 miles. I was thinking fewer. It was hot and humid, and I usually like to make 10 miles my limit, before needing a rest when running with others. I can run 10 to 20 miles on my own, because I am in control of the speed every step of the way. I can take a water break or just sit for a while, and not have to worry about inconveniencing anyone else. I had eleven miles done and figured if the ladies wanted to run ten miles, I would be in the bonus for the day.

Around 6:00 Katie picked me up and took me to a park where I met Amy, Alexis, and one other woman from the Mom’s Run This Town group. We ran through a wooded area on a paved trail. Along the way we ran past a garter snake that was crossing the trail, and came upon a deer on the side of the trail. It bolted back into the woods when we got near. There were a few little bunnies running around the edge of the trail as well.

As we approached the point where we started, I heard several women cheering us on. We ran 4.5 miles and the next group of women were there to run the same 4.5 mile loop with me.

For the second loop, I was guided by Michelle, and Melissa joined us. The other women ran the loop in the other direction, I think. As we booked along Michelle and Melissa were getting a bit tuckered out. Then Ashley, who originally was running with the other women decided to head in our direction and run in with us. Michelle and Melissa had slowed to a walk, so Ashley took over guiding me, and we ran the rest of the way. We were soaked to the bone from sweat because of the heat and humidity. As soon as we stopped running we became mosquito food. It wasn’t a matter of swatting them, it was more like wiping sheets of them off our bodies. As soon as Michelle finished the run, we hurried to get into her car.

Before heading back to Theresa’s we HAD to stop at McDonald’s for a Mocha Frappe with no whip cream.

Theresa said she was hoping to go out for ice cream after dinner, but I got back too late. I really enjoyed the delicious meal she made. It was on the spicy side; I love me some spiciness.

Later I talked to Renee on the phone. She said that Theresa got an email back from a Lutheran Pastor in Eau Claire, and it sounds like he is really on board, and the race director for the Eau Claire marathon is a member of his church. They both are on the schedule to run with me tomorrow when I get to town.

20.4 miles
1498.58 total miles run
$5,637.40 total funds raised

Day 82 – August 20, 2014

The first night I stayed at Theresa’s home she made me a chocolate and peanut butter smoothie. (Two of my favorite foods, in one drink!) She made me the same smoothie for breakfast yesterday. This morning she made me a fruit smoothie. As much as I liked the chocolate peanut butter one, I liked the fruit smoothie even more. I had another couple of mongo lunch meat sandwiches for breakfast today as well.

Theresa needed to head out of town at 6am for work. She arranged for a man named Brent to pick me up a little after 8:00, take me to the track, and run a few miles with me. Brent told me he is just starting to run to get into better shape. We did a mixture of running and walking, which suited me just fine.

As we ran, Delane Cleveland from 12 News community television arrived at the track. He interviewed me, then Brent. He said he likes to interview multiple people to make the story more interesting. I could not agree more. I always prefer to have other people interviewed along with me. Especially if they have a connection to cystic fibrosis and can provide some perspective on how the disease has impacted their lives.

After the interviews, Delane filmed Brent and I running around the track. I think Brent could have done without that part, but he was a real trooper. I think he was tuckered out after the run. To see the 12 News story click here.

As he was leaving, Brent saw a small building with an open restroom right next to the track. He came back and helped me figure out a route so I could get to the restrooms on my own. He fully understood how I use my white cane to feel for surfaces and landmarks. Brent solved my restroom issue, and I can’t thank him enough for being so thoughtful.

It really has been nice to listen to the Champlin Park High School Band practicing on the field in the middle of the track these past few days. Some of the pieces they’ve played sounded really great.

At 11:10am it was once again time for the CNN HLN interview. Right on time, the same woman from yesterday called and patched me through to the man who connected me to Mike the interviewer. I heard Mike begin talking about me, and the run. I was listening very carefully to every word he said, but the volume was extremely poor, and I wanted to make sure I could hear him ask me a question. Then, I heard my own voice. They were playing part of another interview I had done with someone else. This was unexpected, and threw me off.

Then, that interview sound track stopped and Mike asked what my granddaughter was like. However, as I began answering , I heard another voice, and I stopped talking until I realized it was mine. Then I began talking again, trying to ignore my own voice feedback. It was really hard to do, especially since I had never had that happen before. The sound of my feedback was much louder than the voice of the man interviewing me.

I answered the question about Kylie by saying that she likes doing crafts, and loves her little dog who is always attached to her at home. Then he asked a couple more questions, and the interview was over.

To me, the HLN interview had more of a circus feel to it, rather than a professional one. I couldn’t even tell when the interview was over. I said, “Hello, hello, several times” Hoping to talk to the man who connected me with Mike. The guy was there, and I told him about the feedback problem. He was surprised to hear that I had a problem, and quickly ended the phone conversation.

So, I called the station back. I wanted to know what I should do if I ever have that problem again. Should I say something about it while I am live on the air? Whoever answered the phone patched me through to a phone menu. Since I use an iPhone 4 and am blind, I do not know how to get to the button panel on the phone to press a number. So I called back and explained my dilemma. They patched through to the same phone menu. I called back. This time a man asked who interviewed me. “Mike” I said. “Which Mike,” he asked. I  told him I didn’t know. “Then I can’t help you ,” he said. I asked him if he could connect me with anyone who could answer my question about what is proper interview etiquette when dealing with feedback. So, he transferred me. Guess where? Yep, the phone menu. Here is what HLN ended up running, they didn’t use the interview at all.

Approximately an hour after the HLN interview, I received a text from a friend of mine who lives in Los Angeles saying he just saw the interview about me. I called him to ask which network it was on. He said it was on HLN. Imagine that.

I didn’t know this, but Theresa told Brent to bring me back to her home after he and I finished running. The idea was that someone would meet me at Theresa’s home and have a nice lunch for me. The woman was there waiting, and she left after a while. I felt badly when I learned that she prepared something for me, and she was waiting around.

Theresa came to the track to get me, and told me about the lady I was supposed to meet for lunch. I told her that if I had known that she planned for me to go home after only a couple miles at the track, I wouldn’t have agreed to it anyway. I like to get in most of my miles for the day first, then I’m all about being pampered.

Theresa brought me back to her home so I could rest a little. I had a run scheduled with two women later in the evening. Theresa had to work leading an aerobics class.

Around 4:30, Morgan picked me up and we went to her friend, Corrie’s house. From there we ran a little over four miles. Some of it was on  sidewalks, but most of it was on a paved trail in a wooded area. Boy oh boy, the humidity was a killer. Our clothes were soaked within the first half mile. It was a lot of fun running with those two. Afterwards, Morgan drove to the McDonald’s drive-thru so I could get my favorite after-run fix, a mocha frappe with no whipped cream. I think I am becoming addicted to those things.

24.4 miles
1478.18 total miles
$5,488.41 total funds raised

 

Day 81 – August 19, 2014

Yesterday I got a call from a local TV reporter who is stationed in Brooklyn Park, Minnesota. He said he wasn’t sure if he could interview me because I am staying in a neighboring town called Champlin. Renee and I had a lot of fun with this one. I mean, did he really need permission to cross into another suburb? Did he need special papers or something? Anyway, he called again today and said he thought he could do the interview because the High School track is actually in Brooklyn Park.

Last night Teresa made four sandwiches for me, and put them in the refrigerator. Two peanut butter and jelly, and two huge lunch-meat sandwiches, those puppies has some bulk to them. For breakfast I ate the meat sandwiches.

Tonight I have a dinner appointment with my friend Gregg Greeno, who I originally met in Jamestown, North Dakota, on Day 57 of the run. The track I ran on in Jamestown, and the football field, were named in honor of his father Rollie Greeno. Gregg and his family were in Jamestown for a funeral that weekend. When a local newspaper wrote an article about the run in Jamestown, Gregg’s daughter Hannah was my sighted guide for the picture. Hannah is 11, one year younger than my granddaughter, Kylie, who has cystic fibrosis.

Even though the High School track is across the street from Theresa’s home in Champlin, MN, it is apparently a complicated walk, so Theresa drove me this morning. Shortly after I started running, I received a phone call from CNN Headline News asking me to do a live interview. They said they would call me at at 11:10, and we would go live at 11:15.

When CNN called my phone I was transferred to a man who said he would connect me to Mike, the interviewer. He said Mike was on the air, and would prompt me when to speak. I could hear Mike on the line, but he could not hear me. Then the line went dead. Not a sound. This has never happened before. Thinking that maybe they do things a bit differently, I continued holding on. If I had been disconnected, I thought, it would probably be better if they called me, rather than me calling them. I have done several of these live phone interviews since I have been on this run, so this is not my first rodeo.

Around 11:18, I received a call from the man who “connected” me with Mike. He asked me what happened. I said, “I’m not sure, all I know is that I heard Mike on air for a split second, then the phone went dead.”

“Hmm, let’s try this again.” he said. And the phone went dead immediately.

At 11:23, I called the number that made the initial call to me, and spoke to the same man as before. “I’m not sure what happened,” he said. “We’ll have to get back to you.”

Later on I got a call from Fox News. They asked me if I could come to the studio for either the 3:30pm or the 5:00pm live news cast. Renee called Gregg Greeno to see if he would be able to pick me up from the track, take me to Theresa’s so I could shower, and to the studio for the 5:00 news cast. Gregg called me and said he would pick me up from the track at 3:00.

Just before noon, I received another call from CNN. They wanted to reschedule the Headline News interview for later today. The earliest they could do it was 3:00. I told them, unfortunately that would not work for me. The woman said she would get back to me later.

One problem I have with running on this track is that there isn’t an accessible bathroom nearby, and by noon, nature was calling. However, I was not alone. I could hear the High School band practicing on the field in the center of the track. So I knew that I would not be able to let loose in the great outdoors.

Talk about Buddha providing. Theresa had posted on her facebook page asking if anyone could check on me while I was on the track. Just as my bathroom situation was becoming serious, I heard a female voice talking to me.

It was a woman named Kelly. We shook hands, and she apologized for her hands being wet and cold because she just got out of the swimming pool. She said she brought me a bottle of cold water and a banana. Before we got into much of a discussion, I announced that I needed to find “The Little King’s Room.”

We got into her vehicle with her children, one boy one girl, and she drove to the High School. She corralled a high school student and asked him to take me inside the school, to the men’s room. I have to say, he seemed very mature for his age, and we had a great conversation to and from the men’s room.

When the young man returned me to Kelly, she explained that she thought it best that she find someone else to take me into the building, because she was wearing a bathing suit. “Yep,” I said in agreement,  “Especially with all those raging hormones going on in there.” She laughed then said, “Well, it’s not as if I am in a bikini.”

Kelly deposited me back to the track. She said she wished she could spend more time walking and talking with me, and she told me that she is not a runner. Non-runners like to flaunt that I’ve noticed. You know, that they are much too sane to do something crazy like running. Then she went on her way.

Shortly after noon, I received another call from the woman at CNN. They wanted to try and do the audio interview tomorrow at the same time as today. I told her that would work for me.

I wanted to get in 20 miles for the day before Gregg picked me up for the Fox interview. That way I could show the reporter my Garman with the 20 miles on it. I started to pick up the pace, but I knew it was going to be close. Just then Gregg called to let me know he was running a little late. Perfect, good old Buddha there for me again.

When Gregg showed up I had one lap to go. When we got into Gregg’s vehicle, he looked around and saw some homes across a road from the high school and said, “Theresa must live over there.”

As it turned out, we couldn’t find Theresa’s home and were driving around the neighborhood for a while. Just then Gregg got a call on his cell from Theresa and Renee together, asking him asking where we were. Theresa provided on site navigation and ran out to the corner so Gregg would know where to turn to get to her house.

When we got there, Theresa was on her way out the door to teach an aerobics class. She explained to Gregg how to get to the Fox studio. It didn’t seem like he fully understood, and said he would call his wife for directions. I said I willing to forgo the shower to give us more time to get to the studio, but both Theresa and Gregg insisted that I take a shower. Guess they were trying to tell me something.

While I was in the shower, Renee, having figured out that Gregg has a propensity for getting lost, called him back and gave explicit directions to the studio, because she knew we were already running late. As Gregg and I left Theresa’s, he said Renee had also texted turn by turn directions to his cell. We drove on a highway then exited. After a few blocks Gregg announced that we were going the wrong way, and turned around. The clock was ticking, and I was getting a bit nervous. Just then he announced, “Here it is,” and whipped into a parking lot.

When we got into the building, the security guard had to sign us in, and made a call for someone to come get us. A man came and took us to the “Green Room”. It really is green.

A gentleman named Vince introduced himself to us and asked if we needed anything. He said he would escort us in when it was time. He told Gregg he could come with also. I thought that was very cool. That way Gregg could be close to the action.

I was brought in and seated on a very large couch. The studio was very chilly. The reporter Karen Scullin sat down on my right side, and said she would be conducting the interview. She told me how she used to run a lot, but got injured. She said she still runs three or four miles, a few times a week.

Karen was very professional and went over the bullet points that we would be discussing. Then she asked if there was anything I would like to include, and I said “No.” Then she started to ask me about Kylie, what she was like, and how she was doing. However, in the background I heard a booming male voice counting down. “30 seconds.” “20 seconds.” “10 seconds.” “5, 4, 3, 2, 1.”

She of course was quite used to all of what was going on around us. For me, I thought it best to shut-up and be fully ready. This was the first time I had ever been interviewed in this fashion on live TV. In all other the interviews I had done, I stood in front of the person interviewing me.

I was not sure if I was supposed to look at Karen or face the camera. And there was no opportunity to ask once it all got under way. Instinctively I turned in her direction each time she asked a question. After answering each question, I thought I probably should look forward. Then she would ask another question and I would look in her direction.

At the end of the interview, when I knew we were off camera, I told her about my confusion. She said I did fine, and there were cameras all around us. She said it is their job to follow me and make it look right. Here is a link to the video.

Karen began asking me more about Kylie. However, as we were speaking softly, I could hear a male anchor doing the news. I felt uncomfortable and said, “Maybe we shouldn’t be talking now.” She said it was alright, and this level of conversation goes on all the time while someone else is on the air. She said It was probably happening while she was interviewing me. I answered her questions about Kylie. She was a very caring person.

After the interview, Gregg and I went to dinner at a restaurant where his neighbor Carmen works. He asked for her when we were seated. Gregg told her about me and what I am doing. She was very interesting to talk to and had a lot of positive energy. As we left the restaurant, the manager opened the door for us and said that Carmen told him about the run.

We stopped at a Dairy Queen for a couple of Blizzards. Then Gregg brought me back to Theresa’s. Theresa told me about the workout she put her students through. No doubt they love her and get a lot out of her routines.

She said she talked to Renee and they agreed that she should send emails to various Lutheran churches in the Eau Clare, Wisconsin.

Renee usually sends out emails to all of the Lutheran churches in each of the towns I go to. We ask that the pastor ask their parishioners if someone would volunteer to pick me up from my hotel, take me through the drive-thru of a fast food restaurant, then drop me off at a running track, and in the afternoon, reverse this process. So far there have been some retired folks who have helped me out, and they seem to thoroughly enjoy it.

When Theresa picked me up from the hotel yesterday, I asked her to do two things. Take me to a track, and drop me off at a Lutheran church afterwards, but she refused to drop me off at a church and drive away. I told her, “The idea is for me to just walk in on them and tell them what I need.” That is probably why she offered me her spare bedroom.

The only Lutheran pastor that has helped us out so far is Pastor Dale. I met him when Katherine dropped me off at his church in Fergus Falls. I caught him off guard, and he offered to take me to a track and pick me up that night. Instead of asking members of his congregation to help out, he did all the pick-ups and drop-offs. On my last day in Fergus Falls, Pastor Dale told me that he got several ideas to use in his future sermons from our time spent together.

But so far, no other pastors have gotten on board from a cold-call (or email). It has been the same with Masonic lodges. The only Mason we got support from was Roger Nelson in Spokane. He is the Worshipful Master of his lodge and a runner. And he also had experience guiding a blind runner for the past seven years.

20.1 miles
1453.78 total miles
$5,175.37 total funds raised

Day 80 – August 18, 2014

On Friday (Aug 15th) I ran with Jeanne, Julie and Michelle in Alexandria. This morning Michelle’s sister, Theresa, picked me up from my hotel at 9am in Minneapolis. Minneapolis was looking a bit shaky as far as hotel stays.  Brent from Discover St. Louis Park was able to get me 3 complimentary stays in hotels, but all in different places. I stayed at the Double Tree last night, and was supposed to move to the Spring Hill Suites today, which is Monday, and then I don’t have another complimentary stay until Thursday. Apparently there is a lot going on in the Minneapolis/St. Paul area and rooms are scarce and costly.  We were very thankful for the rooms that were offered, but it is difficult for me, traveling alone and not being able to see, to move every single day. It gets to be a bit disorienting and frustrating.  Then there is the problem of not having a place to stay Tuesday and Wednesday nights.

In my blog post on the 15th I posted that I really enjoyed the egg sandwich at Caribou Coffee in Alexandria, so Theresa suggested we go to a Caribou Coffee in Minneapolis.  I tried two different egg sandwiches, I can’t remember which I preferred, both were winners.  Guess I’ll have to go back again, to figure out which sandwich I liked better. I’m actually salivating right now thinking of those breakfast sandwiches.  Good stuff.  Oh, yeah, I guess I better get on with the rest of the blog.

Theresa said that because she does outside sales, her work hours are somewhat flexible. She had a few sales calls to make today, and she drove me to a track in a suburb of Minneapolis called St. Louis Park, because that is where my hotel stay is tonight.

What a gorgeous track it was.  It was brand new with fresh white lines dividing the lanes.  It was very easy for me to run on. As Theresa and I walked around the track, she said that several of the lanes were blocked off.   “Three or four inside lanes?” I asked.  “No, four of the outside lanes.” she replied.  “Huh?” Generally if any lanes are blocked for use by the public at a running track they are the inside lanes,  to protect them from over use and preserve their integrity for competition. I was curious to why the outside lanes were blocked off.

It turned out to be a thick cloth like material laying across those lanes, that had been folded over.  If fully extended it would stretch across all the lanes to protect the surface of the track from football and soccer players cleats  as they walked to the field in the center of the track.

There were a few women walking/running around the track, and Theresa went into full blown sales-pitch mode, telling them what I was doing as far as the run.  Wow, did she sell them. All three women were immediately on board as far as being sighted running guides for me.

The plan for today was Theresa would pick me up from one hotel, get me fed and to a running track, then later pick me up, we would stop to get something to eat, and then she would bring me to the Spring Hill Suites in St. Louis Park. However, as Theresa and I continued walking around the track, she mentioned that she had a spare bedroom, and I was welcome to stay with her. Not wanting to be too much of a burden, I didn’t reply immediately to her offer. She mentioned that there was a high school with a running track right across the street from her home, and again she extended the offer. I hesitated, but she assured me it would not be a problem for her, so I accepted, and we drove to Champlin, where she lives. It took us about 45 minutes to get there, I didn’t know she drove so far, just to shuttle me to and from the track.

When we arrived she drove to the track by her house and said it looked like the gates were locked. We went into the High School and Theresa asked to see the principal. When he approached us, Theresa gave him her pitch about the run. That principal never had a chance.  He was immediately on board, and said he would have the gates opened. He checked with the activity director to make sure there would be no conflict with any scheduled use of the track and my use. The activity director it would not be a problem, and said he would make sure I could access the track at 7:30 each morning during my stay. It would be locked at 4:30 each afternoon, however.

We went to Theresa’s house to fill my water bottles, then she brought me to the track and headed off to make her sales calls.

Theresa returned to the track before 4:30pm. She wanted to give me plenty of time to get settled into my new room and get acquainted with the lay out of her home.  She made a very healthy and delicious dinner for us. She’s a great cook.

11.2 miles
1433.68 total miles
$4983.00 total funds raised

Guest Blogger: Jennifer McKenna

Background (written by Renee)

David met Jennifer McKenna on Day 7 of the It’s All I Can Do Run in Coeur d’Alene, ID. He was only 150 miles into the run back then. It is hard to believe how much has happened since, but the first days of the run are very memorable to both of us. Coeur d’Alene holds a very special place in our hearts; the support we found there was overwhelming.

Jen found our blog online and contacted us through it. When David arrived in CdA at the Holiday Inn Express, she met with him, and guided him around so he could understand the layout of the hotel inside and out. Jen has a flexible job, and David was able to call on her when needed, for any kind of assistance. It was a great comfort to me that she was so supportive of David.

In spending time together Jen told David what it is like for her living with cystic fibrosis. He asked her if she would do a write up for the blog. Here is what she had to say about writing her “dissertation”:

Hi, David and Renee!  Writing this was weird, in a good way!  I felt comedic, then sad, then self-conscious, then amazing, and then totally grateful and inspired by Dave and all the other people I knew who ever spoke out about CF. 

In telling her story of what it feels like to be an adult with CF, Jen give it to us straight. She talks about going through denial, and then dealing with the anxiety and depression that comes with knowing that she will continue to suffer the effects of CF and live a shortened life. Her account is brutally honest and compelling.

Jennifer’s Story (May 26, 2014)

62546_426827901754_4039469_nHi, I’m Jennifer McKenna. I am 36 years old, and I have cystic fibrosis. Dave offered to let me write about what it’s like to live with this illness, and it’s my pleasure to do so!

Diagnosis

I was diagnosed with cystic fibrosis when I was a few months old. My parents were concerned, because I wasn’t gaining weight, and I wasn’t a very loud crier. Mom said I kinda hissed, while most babies are supposed to wail. So, thankfully, my very loving parents took me to the doctor to figure out what was up, rather than just thinking they got lucky with a low-volume crier!

Childhood

Let’s jump forward to what I can actually REMEMBER first hand, as a kid growing up. I grew up pretty symptom free! I am one of the lucky ones, who have a mild case of CF. One thing I DO remember, though, is that I had a CF child’s appetite! One of the symptoms of CF is overproduction of mucus in mucus linings, and because our intestines are mucus secreting organs, people with CF don’t absorb their nutrients as well as most people. What that looked like for me, as a 6 year old, was that my dinner servings were the same size as my dad’s! Friends would join our family for dinner, watch me eat, and tell my Mom, “Jennifer is such a good eater!” My mom NEVER had a problem getting food down my gullet –with the exception of enzyme powder. If you have ever had the displeasure of having pork-derivative enzyme supplements mixed into your Nestle Quik, you know what I mean! I would take nearly an hour to drink that thing down, before I could eat my meal. One day, my Dad tried to demonstrate how “good” it was, by taking a sip, and he almost messed it up by spitting it out! In a later conversation, he said the only way he got that mouthful down, was because I was watching him so closely. Mom and Dad didn’t like “forcing” me to drink something that tasted terrible, but they knew it was important for me to drink this stuff. This supplement helped break down the food, while it was still in my stomach. That way, when the foody mush hit my small intestine, some of the work that my small intestine would do was already started, so I could hopefully absorb more nutrients, during the time that the food was in my intestinal track. I am happy to report, though, that I graduated to being able to take capsules of enzymes, and I got to quit drinking that miserable powder!

So, other than the taking a lot of pills, I didn’t have a childhood that was any different from other kids. Well, I burped and farted a lot… and I had a reputation for some powerful bathroom visits. That wasn’t easy, socially –but really, I could play hard with the best of the kids. Thinking back, I can now notice how my lungs were starting to show more signs of CF, in high school. I hadn’t thought much about it, since coughing seemed so normal, by then. I think I got my first nebulizer sometime during high school. But I remember a lot of kids and even a teacher asking me if I smoked. I had a “good smoker’s hack.” Well, I guess being known as that was as good as being known for anything else, back then.

Early Adulthood

In my first year of college, I was working part time, going to school full time, and playing a lot. I was definitely “burning the candle at both ends.” I was getting pneumonia at least once a year, and pseudomonas infections more frequently than that. That’s when my mom and doctor really started asking me to acknowledge my disease. I fought my mom and doc every part of the way, because I didn’t want to admit my limits. In that year, I learned that I was supposed to be doing nebulized treatments twice a day every day. Of COURSE I didn’t do them! What was I missing, in doing that? I was missing regular treatments of albuterol and mucus-thinning Pulmozyme. These meds would dilate my airways, reduce inflammation, and help move nasty phlegm out of my lungs. What I ignored was that my CF was advancing and my lung tissues were inflaming. I wasn’t doing anything to help myself. I didn’t feel pain or discomfort, and I barely could notice when I was sick. I didn’t really believe my doctors or my mom, when they said I was harming myself through neglect. It wasn’t until my third year of college that I had my first episode of hemoptysis. Hemoptysis, if you don’t know, results in coughing blood. For CFers, lung tissues get inflamed, until a blood vessel breaks. The fastest route for that blood to go out is to cough it out. Fortunately, I had seen a documentary, and I knew this could happen to me one day. So, when I was first greeted with this crimson gore, I was shocked, but thankfully, I was not panicked. I finally had to admit that I was NOT like everyone else.

As poor as my decisions were, I want to explain something, to defend myself from myself a little: CF patients are not allowed to hang out together. It’s not because we’re jerks or our healthcare workers are jerks. It’s because our lungs are highly vulnerable to germs. We’ve got malnutrition, therefore weakened immune systems, PLUS our lungs are like petri dishes for bacteria. CF patients are not allowed to congregate, because we run a very high risk of cross-contaminating each other with our own bugs. We don’t sit in a room together, and talk about what’s going on. Therefore, we can feel ALONE in our sickness. Our families did not get the benefit of talking to other families who had to walk through this experience. In that vein, I didn’t see what was happening to other people, and I didn’t know what the road ahead would look like. Additionally, my family was like me –just trying to navigate with some really vague ideas and guidelines. I would love to hear that there exists a mentorship between families of CF patients, one day.

Current Assessment

Let’s skip forward to today. I want to share how I am at 36 years old. I want to tell you my health status, the concerns of a 36 year old person with Cystic Fibrosis, and the hope I have in my future.

At this point in my life, I am hearing the awesome words of doctors saying things like, “You guys [Patients with CF] are getting older, now, so we see more long term effects of CF!” As I have stated, I have a mild case.

I work 40 hours a week in an administrative position. I no longer have the energy to run around the sales floor, like I did 2 years ago. However, I work this job, and I have enough energy left to work out and enjoy activities such as kayaking. I have been married for 9 years to an amazing man, Corey McKenna. We are considering having a baby this year. While I feel that I am not like my high speed low drag athlete friends, I still have a great life!

I don’t remember my numbers as far as lung functions. Honestly, I don’t have good perspective on what’s “good” or “great” in small airway and large airway clearance, peak flow values, or anything like that. From what I know about how percentages equal grades in school, I would earn a D or F in those areas! But I know I would have a C in total lung volume. I know that, because the doctor’s office has a fun game where you try to blow out birthday candles on a cake, and I can blow out 75% of the candles, on my very best days.

I have a permanent infection in my lungs, Mycobacterium chelonae. I contracted it in 1997. This infection became permanent through a series of unfortunate decisions by both me and a non-CF pulmonologist. I learned a valuable lesson – ALL lung issues MUST go through your CF specialist, no matter how great the other guy is. The infection appeared to go away, but it didn’t. Had I taken my problem to my specialist in 1997, he would have known to treat me aggressively right away, because this mycobacterium has a history of messing up CF patients. It came back with full force in 2005. With all the great efforts and help of my health care teams, it can’t be eradicated. I hear, though, that permanent infections are becoming more common, with adult CF patients.

Because of mal absorption, my vitamin D and Calcium levels are insufficient for a good skeleton. I now have osteopenia and osteoporosis in different areas of my body. My current treatment for that are massive doses of calcium and D, and high-impact exercise.

As a result of CF, I have another issue popping up, for which I have some understanding. It’s CFRD – Cystic Fibrosis Related Diabetes. My endocrinologist explained to me that my CF is changing the healthy tissues of my pancreas into fibroidal tissues. This fiboridal stuff is similar to scar tissue –useless. At this point, my pancreas produces about 30% of the amount of insulin as it should. So I can keep my blood glucose levels low, by just minimizing my carb intake. However, so long as I continue living, I will become diabetic, as the effects of CF advance in my pancreas.
Overall, my quality of life is still pretty good. I’ve got issues, but nothing so big at this time, that I can’t enjoy a normal amount of activity.

Family Planning

I mentioned earlier that my husband and I are looking at having a baby. Our decision to wait had absolutely nothing to do with my health. But as soon as we concluded that we wanted a kid, we had a lot to do, to consider how viable that notion was. CF patients used to be regarded as sterile, but then, as CF care advanced, more and more women with CF were becoming mothers –whether they were ready for that or not! Since I am pretty healthy, and because my mom jokes about how fertile she was, I’m gonna place myself in the category of “likely to get pregnant.” So, now that I’ve established that it’s a biological possibility, what does that mean for me? Broadly, my CF specialist explained that the babies usually do really well, but the mom’s health can suffer. If the mother gets sick, depending on the illness, the med she needs may cause risk to the fetus. For me and Corey, we didn’t want to put ourselves in the position to possibly make a VERY difficult decision. So we investigated further. What were the infections I struggled with all the time? What was likely during that 9 month window? What were the treatments that would keep me healthy, and would they harm a baby at any stage of pregnancy? Happily, with my history of infections and treatments, none of the antibiotics I use would cause harm. Also, I have not had a history of hypertension, which was a big concern for my perinatologist. Timing is also key, I learned. I developed asthma sometime after I hit 30. My perinatologist recommended that I time my pregnancy so that I am in my 1st or 2nd trimester during the cold months. December through March can bring temperatures in the 20’s and below, and breathing that cold air is very difficult for me. If I am approaching full term at that time, the baby will be pushing against my diaphragm, and I’ll have a lot of difficulty getting good air! We’re looking at discontinuing birth control methods in July.

Compliance: Prescribed Treatment vs. Reality

My health regimen, as prescribed by my doctors, is best presented as a list:
• High doses of vitamins twice daily
• 5 capsules of enzymes per meal
• doses of antibiotics 3xs a week, to keep permanent infections at bay
• nebulizer treatments twice a day, amounting to 35 mins. Duration of treatment
• 20 mins. Of therapy with my vest twice a day (I pair it with neb treatments)
• Advair inhaler 2xs a day (followed immediately by brushing my teeth)
• Monthly porta cath flushes
• Annual IV antibiotic therapy
• A minimum of quarterly visits with my CF specialist
• Minimum of 20 mins of weight bearing exercises 3xs a week
What I actually practice can be between 50% compliant and 80% compliant, most of the time. I have periods in which I am fully compliant. This is not good, and I know this. This has been a struggle for me, for as long as the regimen was introduced back in high school. As embarrassing as this can be, I am doing a disservice to myself and other people, if I don’t talk about the psychological and emotional battle of dealing with Cystic Fibrosis.

The Mind, Heart, and Spirit

First, I had a long period of denial. Let’s say this lasted… 35 years??? Denial, as we know, is bad and the denier looks like a selfish and reckless fool. Yeah. Let me say, though, what I got out of denial that FELT positive, even though it wasn’t good. I was able to pretend I was limitless and bulletproof. I pushed myself to go and experience good things in life, that maybe I would have reconsidered, had I paid attention to the damage I was doing. Like I said, it FELT good, but it really wasn’t. In retrospect, I could have slowed down some of the effects of my CF, by reworking my plans and allowing my body to rest. To give an example, I went to school full time, worked out 2 hours a day, worked retail part time at night, and then studied. On days off of work, I’d go pack that time with Judo and Fencing classes, get out at 10:00, then head to the restaurant with my friends, and be home at midnight. I would even study a couple hours AFTER that! I was keeping up fantastically with all my “normal” friends! I even wore my infections well. I was so used to being sick, that I could push through the coughing and low grade fevers, and perform with the others. This was bad! I noticed that, after college, my friends were all fine. But I was left with a lot of scars in my lungs. So what could I have done differently? Take the Fencing and Judo classes AFTER college, reduce the workout time, and cut back on socializing would be good. Or I shouldn’t have gone to college right out of high school. That, though, depends upon personal goals. My point is to prioritize, be discerning, and don’t be afraid to postpone some adventures.

When reality of my condition started settling in, I felt a lot of anxiety about my future. How long would I live? How long, until my friends quit including me in their plans, because I have limits that they don’t? What am I holding Corey back from, by being less-able than him? If I have a child, how old will that child be, when I die, and where does that leave Corey? These questions even spiraled down to “how long until I’m useless and my loved ones would be better off without me?” But here’s the great thing: My health condition is serious, but those concerns aren’t valid. Those thoughts were grounded in false beliefs. My friends love me, and they choose to spend quality time with me, whether it’s enjoying a meal together, or going for a walk. They may have to find another friend to go backpacking with, but that’s okay. I’m still their only Jen McKenna, and backpacking trips can never change that. Similarly, Corey chose to marry ME. He knew the ramifications of my illness, when he chose to propose! When I expressed these concerns, my friends and family wrapped around me and confirmed that I was treasured as me, for me, and not for what I could do. I cannot tell you how important it is to continue confirming for your loved one how they are loved and valued, as they experience changes in their lives. This is true for people of every walk of life, including those with CF.

The final piece of the puzzle for me was spiritual. I am the kind of person who does not do things, unless she wants to. I must agree with why I do it, and I must believe the reason is good enough, in order to “want to” do it. For years, I knew in my intellect, that I had to be responsible with my choices in treatment compliance. But deep down, I didn’t believe I deserved it. Why did I get to live this well, when I have behaved so recklessly? The truths are these: 1) I doubt that I deserve to live this well, but God has certainly granted grace in this area 2) I need to give the shame of my recklessness to God. I don’t need to carry that garbage in my head/heart/spirit any longer 3) God knew what He was doing, even before I was born. I was made purposefully, thoughtfully, and perfectly according to His plans. My response to Him, upon this realization, is to make the best choices as I possibly can, in order to care for the body He made for His glory and according to His purpose. Okay… so, what can be more important than to care of a part of God’s plan?! That seems like a “good enough” reason for me to “want to,” now.

Why I Need Champions

After disclosing some of my heart-journey with CF, you may have concluded that I don’t like to look too closely or too long at my illness. Of course I want to be cured. But thinking beyond my daily responsibilities about living with CF and wondering how it’s all gonna play out for me is too depressing. Thankfully, there are bold and compassionate people who are willing to pick up that fight, when I cannot! I call them my champions for the cure for CF.

David Kuhn is definitely a champion. It takes an extraordinarily determined, hopeful, and loving man to look at his granddaughter’s condition, and then take on responsibility to do “all he can do” to brighten her future. During this massive feat of running around the country –and doing it blind, David is very vulnerable. He is thereby taking great risks just for the HOPE that funds are raised, and that Kylie can benefit from the medical advances that follow these contributions. At the very least, Kylie will be proud of her grandpa and witness this act of love for her. She’s also gotta know that he’s got a LOT of admiring fans and we are all watching for her cure!

Day 79 – Sunday, August 17, 2014

Today was moving day from Alexandria to Minneapolis. My original plan was to take the Greyhound to the twin cities. Sandy, my wife’s friend from college, would pick me up from the bus station and drive me to the Double Tree. Doing it that way, I would have arrived at the hotel in Minneapolis shortly after noon. But I found out that I had an offer for ride from the daughter-in-law of Coni McKay. I called Coni, then she called me back later and said her daughter-in-law would be contacting me to tell me what time I could expect to be picked up. She thought it might be sometime around 2 or 3 o’clock, or later. I told her that checked out time was 11. Coni called the front desk to request a late check out for me.

Fortunately, my wonderful friend Linda was working the desk. She checked the registry and determined that not all of the rooms would be needed for the night, and I could stay until my ride eventually got there. She also reminded Coni that I would be there through lunch and was wondering what arrangements would be made for me.

Coni said she would pick something up and bring it to me. Linda found a menu for the restaurant Conni was going to, and I ordered fettuccine alfredo. Coni dropped the pasta off with Linda.

Jessie, Coni’s daughter-in-law, called to tell me that she was meeting with some family, and wasn’t sure when she would be at the hotel, but gave me a time range. Sooner than I had expected, Jessie called me to say she was stopping for gas and then picking me up. She arrived in a few minutes. Linda and I said our goodbyes, and we loaded up my bags in Jessie’s car. Jessie told me her two year old son, Noah, was sleeping in the back. He slept until we stopped in heavy traffic outside of Minneapolis. Noah whined a little bit, but for a two-year-old he did extremely well.

Jessie was a delight to talk to. She said that she would contact her friends in a running club to see what she could do about getting sighted running guides for me. We arrived at the Double Tree around 5pm. We brought my bags into the lobby, and Jessie took Noah to the restroom so she could change his diaper. When they came out we said our goodbyes, and they left.

The desk clerk, Carlos, was extremely kind and helpful. He checked me in, and brought me to my room. I called Renee to see if I had any rides or appointments today or tomorrow. It was not looking good at all. I had no one to run with, and tomorrow I would be going to another hotel. Moving for me is a very arduous task. There is nothing smooth about it. It is very inconvenient to say the least.

I suggested to Renee that maybe I should just skip Minneapolis and go to Eau Claire, WI on Tuesday morning. Renee said she would keep trying to get the ball rolling in Minneapolis. She said already had spoke to a lot of people who said they would try to help, and sent out a ridiculous amount of emails. She said she tweeted and posted on our facebook page that we were desperate, and also called in our secret weapon to help, Nellie Degan back in Jamestown. I don’t usually know much of what goes on behind the scenes, but sometimes I find out after the fact.

As Renee and I were talking, I told her that I was getting a call from a 701 area code, and wanted to find out who it was. I switched over to the other line and it was Nellie. Nellie is an organizing superstar, and began telling me about all the people she would call in the morning to get things up and running in Minneapolis. We had a lot of laughs reminiscing about our time spent together in Jamestown. Like when we went to the Chinese buffet, Nellie helped me load up a plate with a huge mound of food. Once I was seated with my plate in front of me, Nellie kept bringing more plates, until I sat with four full plates of food in front of me. She made sure that I consumed as many calories as humanly possible. She did the same thing at the Pizza Ranch. I told her how much I liked mashed potatoes, so she loaded up a plate with an extremely large volcano of mashed potatoes and gravy. We are so lucky to have met her. She always is eager to help us with anything we need, and she really goes all out, and gets results. I have learned a lot from watching her in action. She really doesn’t take no for an answer. During our phone conversation, Nellie said that she will be there for us when we need her for the rest of this run.

After talking with Nellie I called Renee back. She was on the other line with a woman who could drive me to a track tomorrow, so she conferenced me into the call. It turned out to be Michelle’s sister Theresa. I ran with Michelle Friday morning (Day 77). Theresa said that she would pick me up from the hotel at 9:15am to take me to a track. She said she could pick me back up and bring me to the other hotel, so I could check in, after noon.

Theresa hung up and Renee and I talked about how things might pan out in Minneapolis, about how great it is that we can call Nellie for backup, and that she would be making things happen tomorrow.

I decided to head downstairs and get something to eat, but as soon as I stepped into the hallway I realized that I could not remember where they put the elevator. I called the front desk to ask if somebody could assist me to the restaurant. The woman said “Yes of course! And I have found your Facebook page. I am deeply touched by what you are doing.” A few minutes later a young man from Ethiopia named Abee (pronounced A B), knocked at my door to escort me to the restaurant. Abee has been in the States for two years and joined the National Guard so that he could go to college. Seems like a smart move. Abee waited on me, and after I ordered my food, he brought me a large plate of freshly cut up fruit including strawberries, blueberries, and grapes. He said there was no charge for that. After eating, he escorted me back to my room.

0 miles
1422.48 total miles ran
$4880.93 total funds raised

 

Day 78 – Saturday, August 16, 2014

This morning Brett picked me up at 5:45am to run with the ROUS (Runners Of Unusual Speed) running group. When we got to City Park, there were many people I had already met and run with, including Henrik, Bjorn, and Andy Gunderson. I was introduced to two people I had not met before, Julia and Danza. There was a MD among the group as as well, but I did not learn of him until later, after he had already left.

For the first 8 mile run, I ran with Brent, Henrik, Bjorn, and the medical director. Bjorn was getting a lot of ribbing about the steak dinner that he promised me but never delivered. Of course, it was all in good fun.

When we returned to the starting point, we all stood around and talked for a bit, and then I ran with Danza. Danza said 20 years ago she was an accomplished runner, but then she had three children and took a break from running. Now, she is starting to get back into it. I enjoyed listening to her talk about how she slowly progressed as a runner in the first part of her running career.

She told me a story about how she and her husband once ran in the same marathon. Her husband had the expectation that he would finish the race way ahead of her. She said that she ran with her head down, and focused on the road a few feet in front of her. When she was near mile 24, she looked up and found herself directly behind her husband. With that, she picked up her speed and passed him, while patting him on the shoulder and saying, “Nice job, keep it up!” In the next marathon, she started in front of him and he never caught up with her.

Danza is an RN, and works with Shawn Severson who is the OB/GYN ultra-marathoner who I’ve run with several times this week.

When I got dropped off, I did a few miles the parking lot of the motel, since I did not have any more appointments for the rest of the day.

15.55 miles
14422.48 total miles
$4,880.93 total funds raised

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