Monday, July 28, 2014

Thought 28: A symbol of hope . . .

By the time I turned 28 years old, Bob and I had bought our first house and were enjoying all the wonderful things about living in Ann Arbor, Michigan. We survived the long and cold winters and soaked up the beautiful days that came with summer and fall in the Midwest. We had made wonderful friends in the community who were like family to us, especially living so far from our own. I continued to struggle with my health issues and the details of this time are so fuzzy to me. I know I had at least three surgeries in 2002, but the story behind each is escaping me. These were just tough years. Sometimes the words are just not there. 

My mom loved daisies. She always told me that they brought her so much hope just by looking at them. I started sending her a bouquet of daisies every month. One month I changed it up and sent her a cake with a huge daisy painted on it from our favorite Zingermans bakehouse in Ann Arbor. It is our flower together and a way for me to feel connected since losing her. I have even had a vase of daisies at each of Megan's birthday parities and always take a couple of stems to her grave site when I am in Tallahassee. They are a symbol of hope for me as I move forward and find my way here on Earth without her.



The anniversary of losing someone is marked differently by everyone. I had someone ask me recently for advice on what to do for a loved one that was approaching a difficult anniversary. I have no advice to give here unfortunately because what I would want or need is not what other people might need. Some people want the hugs and cards and reaching out. While others just need some space. I think it is a very private time, as are many anniversaries that come along in life. Today (Monday, July 28) is 5 years since my mom passed away. I happened to be in Tallahassee with my dad, which gave me the opportunity to share some daisies with her. I find the more I try not to think about July 28, the more I think about it and the harder it becomes. So, every year, I stop fighting and just let myself feel what I need to feel. 

I will never share the details of that last day here in order to protect her privacy and that of my family. I will say it was not something any of us were expecting that day and it was the worst day of my life. I do not have a lot to say about it, except that I miss her terribly. I still look around and think, "where in the world is my mom?" I stare at her headstone and her name and still just wonder how this can all be real. Anniversaries and holidays are difficult for most anyone that has experienced losing someone. I miss my mom so much on the first day of fall - this was her favorite day of the year. I also miss her tremendously at Christmas time, as I have never known anyone that loved that time more. I miss her every day. My mom embodied the word family and centered her life around it. 

So, that is all I have to say about that. I think it is time to crank up the music in the car like we used to, and dance all the way to the store to buy a bouquet of daisies for myself. I love you mom. 


Monday, July 14, 2014

Thought 27: Not just your average month . . .

In 2001, the year I turned 27 years old, I started my first job out of graduate school with the Washtenaw County Prosecuting Attorney's Office. Bob already worked for the county in Human Resources, so it was nice to be part of the same organization. I was hired to start a youth mentoring program for the kids coming through the Juvenile Diversion and Restoration program. The program would be a part of a greater mentoring initiative through the Michigan Governor's Office. I remember showing up for my first day and being shown my office. It was my first private office, which I was excited about, but all I had to get started was some files and a volunteer training PowerPoint. It was a great experience learning to grow a program from scratch and market it throughout the community. I even mentored a young girl myself, who was in 8th grade when I met her, and who I still keep in touch with today. Never underestimate the impact you can make on the life of any child with the gift of your time and love. 

When I think back on my over 14 years of battling health issues, the details and chronology is not super clear. The feelings it left behind are strong, but the actual account of what happened and in what order is sketchy to me. I dislike filling out medical forms for multiple reasons, but the question about past surgeries and the two or three lines they leave to answer it is always a treat. I don't even bother trying to answer it and usually say 20+ surgeries starting in June 2001 (averaged about 3 a year). I just lost count after a while. Part of this journey for me is being able to make peace with that time of my life. I can't "say goodbye" or "let it go" because it will always be a part of who I am and a part of my story. But it is time to make peace with it by sharing it and knowing that I would not be me without having experienced it. 

This is a picture of me after being on about 80mg of Prednisone over an extended period of time. I have discarded most of the pictures from this time of my life because it is so painful for me to look at them. This is what I looked like for a majority of the 2-3 years leading up to June 2001 and my first surgery. It's time to own this time of my life and just talk about it. Predisone is the only thing that gave me any relief from my Crohn's Disease, but it doesn't really help with symptoms, it just masks them. I was on and off of it for many years as my doctors worked so hard to keep my symptoms under control. Anyone who has taken this drug at all understands - increased appetite, swelling of face and body, insomnia. Lots of fun! As an added bonus, I now have significant bone loss from it. I remember when we lived with my parents a month before we moved to Michigan and I just stayed up a lot of nights scrapbooking on the dining room table. It made me feel uncomfortable both inside and out and my family and I reached a point when other options had to be explored. 


After meeting with several surgeons in Southeast Michigan, Bob and I found Dr. J. I clearly remember meeting with him in his office as he outlined our three surgical options. I knew about illeostomies since my dad had one and the thought of it just terrified me. So, we decided to try the least invasive option, which included a removal of my entire large intestine and reconnecting everything inside. The surgery was scheduled for June 2001. I can look back now and wonder, if I had gone ahead and had a permanent illeostomy put in, could I have avoided all of those years of pain? Maybe. But, I can't look back and say "what if" because I think my life is exactly where it should be now. 


In early June 2001, I went in the hospital to have the surgery done. Outside of having my wisdom teeth removed, this was my first surgery. If they removed the sick part of me, life should just get better. The surgery went well, and after a couple of days in the hospital, I was able to go home. My parents and Bob's parents were there, and my brother Mike and wife Cynthia flew up and surprised me after I was in recovery. I was feeling good. While this was happening, we had other things going on in our family. My "Graney" (dad's mom) was in failing health and declining quickly. She ended up passing away after I got home from the hospital. In addition, Bob's Aunt Virginia (mom's sister) passed away around the same time (again, the sequence of events is failing me). Bob flew to Maryland to be with his family for her funeral. I really wanted to be with him. I was determined to get down to Florida for my Graney's funeral, my last living grandparent, despite some pain I was having in my abdomen. I talked with Dr. J and he thought it would be fine as long as the pain went away or didn't get worse. I was so naive. I was determined to go even though everyone around me was hesitant.  Bob made it back from Maryland and we flew down with my mom to join the rest of my family. 

It was a really hard month already, but the pain was getting worse. I was almost afraid to say anything or admit how bad it was really getting. It was a very sharp, intense pain - still the worst physical pain I have ever felt to date. I had to hold on to the wall in the hotel to walk and just did my best to get through those four days. Looking back, I wonder why I didn't go to a doctor sooner. I was trying to get through the funeral and get back to Michigan. My mom flew back to Michigan with Bob and I so she could make sure I was ok. I was in the worst pain of my life on that airplane, and with my luck, I had a young kid behind me kicking my seat and playing a travel version of Hungry Hungry Hippo. I vow to never buy that horrible game for anyone else and will not be happy if it is gifted to my daughter. It's somewhat funny to think about now, but I can promise you it was a terrible time then. My mom was a true "mama bear" as it took a lot for me to get her to stay in her seat and not rip the game out of the kids hands. 

We all knew something was wrong, but I was hoping I would do better just getting home and resting. As we were leaving the airport, I had to pull over and get sick on the side of the road. Bob immediately took me back to the hospital. Dr. J told me to go straight to the emergency room and he would try and reduce my wait time. I don't remember how long we waited, but I know it was at least a couple of hours and I had a very hard time sitting still due to all the pain. Bob and my mom both kept pushing the staff to get me a room, but it just took a long time. It was getting to be late at night. Once I was back on a stretcher, they took me for a CT scan. Dr. J came in to tell us why I was having so much pain - I had a bowel perforation. I had been living with this perforation for almost 5 days. He immediately took me into surgery and I woke up with a temporary illesotomy (one of two I would have temporarily over the years before I was given a permanent one in 2006). I was devastated and scared, but in the end, it was a life saving measure. I almost died from this event, which I have always down played over the years. Dr. J was very clear with Bob and my mom about how serious the situation was that night in June 2001. 


I ended up having that temporary illeostomy until March 2002. They took me into surgery in January 2002 to try and reverse it, but my body needed more time to heal. The rest of 2001 was very difficult for me. I was not feeling good about myself at all. I was doing my best to learn how to live with this bag on my tummy, but the psychological effect on me was massive. My dad was so supportive and would not let me get down about it. My saving grace was my Bob who stood with me and loved me through all the sunshine and darkness. I remember being in one of our best friend's weddings in Charleston in December. We had a great time, but I was so self conscious about the dress as I always felt like everyone could see the bag through my clothes. The picture above is from New Year's Eve 2001 with those same friends. I was happy standing next to my Bob, but still not feeling that great. There is probably a reason we have very few pictures from 2001. Bob and I always make the best of it and I'm not trying to sound overly dramatic. There are so many people that have it so much worse, I know. I'm just trying to share my memory of a difficult start to a even more difficult journey. It's time to make peace. 

The only surgery I have ever had that was done laparoscopically was in 2012. Every other surgery that has been done on me has required opening me up. This wear and tear on my body of scar tissue and adhesion's just led to more surgeries. I think I could glow in the dark with the amount of radiology visits I have had over the years. Time to make peace with the IV they had to put in my foot in the middle of the night. The failed epidurals. The pain medications that were not ready when I woke up from surgery. The blood transfusions. My 5-week hospital stay. The intestinal blockages. The daily enemas. The great amount of adhesive that has been put on me and torn off. The pic lines. The bottles of IV contract I had to drink when I was too sick to ingest anything. The ambulance ride transferring me from one hospital to another. Watching my family sit in uncomfortable chairs for hours on end. It's like I just have to get this out of me! 

I always thought that June 2001 was the worst month of my life, until I reached July 2009 when we lost my mom. I say all of this and share all of this to be able to see how far I have come, how far Bob and I have come. He has loved me thorough it all and I am forever grateful to him for it. I am ready to make peace with these memories and know that they are part of what gives me my strength today. We can all name that day, month, year, or period of our lives that was most difficult. My hope is that we can see it as part of a greater journey and embrace it as part of ourselves. Sometimes it's not possible, but it sure is a blessing when you are at the place when it is possible. 

Thursday, July 3, 2014

Thought 26: 3 months and 2 weeks . . .

I became "Aunt Sue" in Wichita, Kansas on June 7, 2000. My Kaylen was born and I sat in the waiting room with my parents waiting for my brother Steve to come announce "it's a girl!" I love being an aunt and I am proud to now have four nieces and three nephews, with one on the way in the next month! I have been in the waiting room for four of their births and anxiously waiting by the phone for the news of the others. I love them all to pieces and would do anything for them. In looking back on the year 2000, my happy memories are mixed with difficult ones. After three years of being sick and not knowing what to do, Bob and I met my parents in Rochester, Minnesota so I could be evaluated at the Mayo Clinic. I saw multiple doctors who poked and prodded me from every angle. In the end, they sat me down and told me I had Crohn's Disease and connected me with a specialist back in Michigan. I was floored by this news, but I was glad to have some clarity on what was wrong. Bob and I returned to Ann Arbor and I completed my Masters degree by the end of the year, some of it from my bed with IV antibiotics flowing in my arm. But I was Aunt Sue now and that brought me so much joy. 

And the journey continues . . . I am sitting on the porch of our beach house rental for the annual Hubbard family beach week. What a special tradition! I have been coming to this week with the family for over 17 years and every year brings another full set of wonderful memories. It is pouring down rain today from Tropical Storm Arthur and we are having a "quiet" day inside - with four kids under the age of four. I have eaten my weight in chips this week, but you can't really mess with tradition. I brought my bag of running gear with me and have already logged a 6 and 4 mile run. I hope to kick off the 4th of July with a 9 mile run, but Arthur is going to have to get out of the way first.

I am excited to report that I just completed my first full month of training for the Chicago Marathon. I now have 3 months and 2 weeks to go until Race Day! Although I have been running pretty consistently all year, it feels good to have one month of official training behind me. I feel really good.
 I have struck a groove with my running and feel strong. I have come a long way from April when I hit such a rut with my training. Since I know what it takes to train for a half marathon, I now feel the difference in training for a full marathon - the longer weekday runs. I never ran 6 miles during the week in past training, and that mileage will only continue to climb. Wiser souls have warned me that I will really feel the marathon training when I run my first 15 mile long run. I'm sure they are right!






I received my "Run for ALS" singlet a few weeks ago from my charity team, the Les Turner ALS Foundation. Things became more real when I opened that package. I now wear it for every long run. I have to make sure it is good and broken in for race day. On the back it has a place to write the name of the person you are running for with the charity. I run for my mom every time I
lace up my shoes, so that is who I wrote on my shirt. But, since starting this journey, I have learned of three people in my life or connected with someone I know that are living with ALS or have lost their life to this devastating illness. I will include their initials on the back of my shirt as well, which includes my surgeon and friend, Dr. J. I will continue to add initials to my shirt as I learn of them, so if you know anyone who's life has been affected by ALS, please let me know and they will be running with me too. This disease affects a lot more people than most would think and needs much more attention than it is being given.

One of the great things about getting started with my marathon training is having a training plan that outlines my journey. I have my weeks mapped out from now until October 12 with what days I will be running and what days I will cross train. I know I will be running my longest run of 20 miles on Saturday, September 20. I was bouncing between two different training plans for some of June, but I have now settled into the TrainingPeaks plan sent to me through the Chicago Area Runners Association (CARA) and the Les Turner ALS Foundation. I have an app for it on my phone and can access it whenever I need it. The remote support I have received from CARA has been very useful. I also hope to join a local running group in July for my long Saturday runs.

The anticipation is gone. The waiting is over. I am doing it. I am training for a marathon and getting deeper into the journey every day. It's funny, I am not feeling scared because I know I will just take it one run at a time. I am prepared to run the distance in front of me and nothing more. There are some very hard days ahead of me and probably some tears along with them. I am comfortable now with running my own race and will use the incredible strength of those on my shirt along with my own inner strength to take the miles as they come.