Thought 33: For someone like you . . .

After we moved to the Atlanta area in 2006, I ended up having three different surgeries that delayed me looking for a new job, one several weeks before my start date. However, once I got back on my feet and healed, I was off to my adventure at the Carter Center. I have never been more proud to work for an organization. I turned 33 two months after working there and stayed until Megan was born three years later. I was continuing my experience as a fundraiser, but this time I was working with individual supporters. The mission of the organization that President Jimmy Carter started after his presidency is "waging peace, fighting disease, and building hope." I was in the right place. My position did require me to travel about 2-3 days twice a month, which was new to me. I met the most wonderful people in my travels from Los Angeles to Miami to Chicago to New York City (and many small towns in between). I felt like I really made a difference in my time with the organization and miss it many days. I was very honored to have the chance to interact with President and Mrs. Carter and later be able to introduce them to my Bob and my parents. Not many people can say they have square danced with a former President! Please check out the work of the Center as they are making a big impact for people all across the globe (http://www.cartercenter.org). 

As I sit down and write this post, I am enjoying the sweet smell of my pumpkin spice Yankee Candle. I LOVE Fall! Today is the first day of Fall and was my mom's favorite day of the year. It always gives me such a comforting feeling when this day comes each year. She and I shared our love for the Fall and upcoming holiday season. No one loved decorating for a holiday more than my mom!

This week I had a follow up appointment with my nephrologist (kidney doctor). I started seeing him after a bout of severe dehydration in May. My gastroenterologist wanted me to have someone to monitor my kidney function on an ongoing basis since I had elevated levels (the higher the number, the worse off your kidneys are functioning). I face a bout of dehydration that lands me in the emergency room or hospital about every year and a half or so. To make a long story short, my doctor told me that my blood work looked good, "for someone like me." I really like my doctor, but this phrase was not exactly what I wanted to hear. I guess I still hope that my body can return to "normal" functioning. I learned that he likes to see the average person under a 1 for their kidney functioning. I am a 1.3 right now, but "for a person like me," he is happy with that number. Because I lost part of my kidney when I had the cancer removed and I have faced so many episodes of dehydration (due to my Crohn's Disease and illesostomy), my kidneys are not at the same level of functioning as they were before I was sick. So, that's where I am now. I am fine and he is not concerned, because that is a good number for me.

I don't know if others out there have experienced the "for someone like you" experience. As I finished my 20-mile run this past weekend and I head into the last three weeks of my marathon training, I feel like I am in the best shape of my life.  I emphasize my life. I will have to enter my 40s and walk away from this marathon being comfortable with what is good and normal for me. I am missing a couple major organs and do not have a perfectly functioning body, but it works for me, which is what I am going to take away from the "for someone like you" comment. I am so fortunate to be as strong and healthy as I am that I need to embrace the body and mind that I have to take me through the rest of my years. I may have to see multiple doctors every 6 months to make sure that everything is ok, but I am grateful every time that they send me on my way feeling good about my status.

When I really think about my life and where I am, "for someone like me," I am super blessed. My story could have gone another direction, but I am right where I should be and could not be happier with my Bob and my Megan. I am actually very proud of myself. It's not so bad being "someone like me." I have no idea what the future holds for my kidneys or any other part of me. I think issues like my kidneys are the after shock of my Crohn's Disease and other health issues. I will probably be facing these issues for most of my life. My dad has also faced a lot of issues with his kidneys as a result of his Crohn's Disease, but overall, he is a very healthy man. Once again, I would love to follow in his footsteps!

When I think about "someone like me" and what I want others to think of when they think of me, it is not my health challenges or what I have overcome. Our minister at our church has been preaching this month about hospitality. When people think of "someone like me," I want them to think of someone they can always count on, someone that is a really good friend. I want to be the person that people know will always be there. Looking ahead, no matter what I do as a professional or where I live or travel, I want my biggest contribution to be the love I give as a wife, mother, daughter, sister, aunt, niece, and friend to be my greatest contributions. I want my family and friends to see my love as unique and true. Because "for someone like me," there is nothing more important.

Thought 32: Too fragile . . .

A life changing turning point in my life came the year I turned 32 years old. There were actually two "decisions." First, Bob and I were sitting on a bench outside of the University of Chicago to get another opinion about why I continued to be so sick. After numerous surgeries, my body was still not getting better. The Chicago doctor told me what I didn't want to hear but I already knew - I had to get a permanent illeostomy. It was my only option to feeling better and getting my life back. Looking back, it was such a simple decision, so obvious. But, I felt defeated and terrified at the time. We returned to Michigan and my wonderful surgeon, Dr. J, made plans to have the surgery in the spring. That same year, Bob and I made a decision to leave Michigan and return to the South, in Atlanta, GA. Bob had a wonderful job offer with Gray & Company and was in the midst of finishing his MBA at Michigan that fall. I was thrilled to live closer to both sides of our family, especially needing to be closer to my mom. We moved in October 2006. My surgery came with some complications, so I ended up having two more the following winter and spring, one in Michigan and one in Atlanta. My body finally started to heal and the Crohn's Disease became quiet. I just pray and hope it stays that way. 

There are always thoughts and topics floating in my head that I want to write about, but this week, my thoughts were halted and consumed by a tragic loss. On Monday, September 1, our dear friend Matt Cook collapsed during the running portion of the Cypress Triathlon in Houston, TX. He was raising money for cancer research through Team in Training. I received a group email from his wife, Stephanie, in the middle of the night on Tuesday morning telling us that Matt was in critical condition and needed as many prayers as possible. I read that and said prayers, but of course I assumed he would be fine. Dehydration and kidney problems? The doctors could fix those issues. No problem. Tuesday afternoon I was on Facebook and noticed some posts on Matt's page that he had passed away. I dropped my laundry on the floor and just stood in shock. How could this be? What? I called Bob immediately and told him the news. I could not stop crying.

Matt is one of the best guys I have ever known. He had the best smile and one of the sweetest hearts. Despite him being one of the biggest Ohio State fans I have ever known (their two dogs are named Woody and Buckeye), we loved everything about him. We met Matt and Stephanie when they moved in next door to us in Ypsilanti, MI. They were later relocated to Atlanta, which we were thrilled about when we moved there a year or so later. They accepted us as friends, although we wore our Michigan colors to their going away party when they made their next move to Houston, TX. We have kept up over the years, especially when we celebrated the birth of their kids, Macy (4) and Grant (2). They shared Macy's clothes with us when we adopted Megan. Some friends are just always there near or far and Matt and Stephanie are those friends. We just love them.

It's hard when we get a harsh reminder like this that life is too fragile. How could Matt Cook not be on this Earth? I thought of him all day on Saturday, thinking he should be at home with his family watching college football. Ohio State lost because they didn't have their biggest fan. I look at all of the procedures, surgeries, and hospitalizations I have had for a variety of reasons over the years, and I have survived them all. I have to go to the ER or stay overnight in the hospital for dehydration about every year or so. I do not know any details about Matt's case, but I just can't seem to understand how this can happen so quickly. My head knows why, but my heart can't seem to make peace with it. I can't stop thinking about Stephanie and their children. I just can't imagine. Too fragile . . .

On Thursday, September 4, I learned of the passing of another friend, my Dr. J (Dr. Jason Bodzin). I have written in the past that he was battling ALS. He lost his courageous battle the day before. My heart is with his wife and family. I talked to him in March and he sent me a donation for my fundraising for the Les Turner ALS Foundation and the Chicago Marathon. Although he has not been my doctor since 2007, we have kept in touch over the years. He was one of those special doctors that went above and beyond to ensure his patients were getting the best possible care. He used to come down to radiology when I was getting a scan or test and wait with the technicians to see the results. He didn't want to wait for it to be read. He always treated me like a daughter and made me feel like things would be eventually be ok. Thank you Dr. J. - things are ok. I am so grateful to his family for sharing him with so many people as he always gave more time than was asked of him. Too fragile . . .

My heart and prayers are with a family friend who is 32 years old and battling throat cancer in Arizona. Too fragile . . .

My heart and prayers are with my college roommate and her older sister Laura or "Lala" who has still not woken up from heart surgery on September 4, and has three kids and a loving husband waiting for her to show signs of improvement. Too fragile . . .

I am a protective person and just want to make everything ok. The thing about life feeling too fragile, then strength and support comes along. If you are suffering a loss, you have to surround yourself with strength and support, even when you don't have any. The same is true for facing a challenge, health or otherwise. Get mad. Get bold. Let your loved ones be strong for you when you are searching for your own strength.

I probably have not seen Matt and Stephanie for at least a year. They came into town and we had lunch. It was so good to see them both and we always talk about wanting to get together more. A month ago, I received a family update from Stephanie that discussed Matt's upcoming races and shared a picture of their new home they built and moved into on August 1. It just breaks my heart. One of the things I loved about Matt's obituary was the fact they shared all the races he had completed, including his first marathon. I thought of him a lot as I ran 18 miles this past weekend and I carried his strength with me. Rest in peace my friend and always know how much you are loved and celebrated. Now, I just have to find a time soon when I can hug my dear friend Stephanie. Life is too fragile, so I will do my best to fill my time with love, hugs, laughter, and hope.

Thought 31: Looking on the bright side . . .

I loved working at the Detroit Symphony Orchestra. I still can't believe I landed that job. I went from helping run a program for homeless students through the Washtenaw County school systems to writing grants in the arts world. I wanted to work in fundraising and I had enjoyed my opportunities to write grants in my last couple of jobs. So, I was lucky enough to interview with someone that believed in me - thank you Ann. I learned so much in my time with the DSO. One of the best parts was sneaking over to the concert hall during the day and watching the orchestra practice. I saw a lot of concerts in my time there and I loved it all. Although this was a change from my work in social services, it was good for my soul at 31 years old and the experience was invaluable. I worked with the best people and never minded the commute to downtown Detroit. Looking back, that commute is just an average day in Atlanta! 

As I write this blog, I am watching my three-week old niece sleep. Is there anything more peaceful than a sleeping baby? Her world is so new, so full of hope and big dreams. I want her to always feel that is true. I sure do.

I am an optimist. Although I have been challenged in almost every way to lose hope, become cynical, stop believing, I still stand as an optimist. I still believe in the good in people and community. I don't believe that all politicians have poor intentions and it is still possible to be inspired. I continue to pray and hope for world peace. I call it optimism while some may just say I am naive. Either way, I think having individuals like me in the world is important and I refuse to let go of what feels natural to me.

I have felt my optimism challenged a lot lately, especially over the past month. Although I am hopeful, it doesn't mean I am not scared. The news over the last several weeks is so concerning. From Ferguson to the Middle East to Russia to increasing terrorist threats, an optimist can start to wonder, is there still room for hope? Are we naive to think that things can get better? Can we save our environment? Can we feel safe to send our kids to school again? Will our leaders ever learn to work together for the betterment of our communities and people? Can't we all just get along????

The world we live in today is a hard place for an optimist to stay an optimist. I am really struggling with what the world will look like for Megan and, hopefully, one day my grandchildren. I think we all share these concerns. But I am holding onto my hope as best I can. Some days are better than others, but I have faith that the good guys will win in the end.

I think I come from a family of optimists in many ways. My parents have always been optimistic people, which I'm sure is where I get it from. My dad's mantra to me through all my health challenges was to "not let the son of a bitches keep you down." He wanted me to get mad about it so the fire in my belly would rage strong and I would never give up. My parents always knew everything would eventually be ok, no matter what my brothers and I were going through. Although my dad is an attorney and my mom was an early childhood educator, they are both advocates at heart. They both have worked hard on the state and local level for better programs to educate children or build better communities. You have to be an optimist to work for change for over 40 years. There have been times they grew tired of the fight, but they never gave up. They always believed change was possible. My dad still feels that way and continues to make a difference for his family and profession.

Optimists do want to make a difference because they believe they can make one. As I think about returning to work in the next year or so, I am trying to figure out how I can make a difference for someone or something. I am so optimistic about Megan's future and the great impact she will make on the world. I do hope she will be an optimist too, that no matter what happens, she believes that things will be ok. This doesn't mean I'm not realistic. I feel like I can be both. For example, I realize my marathon will be a monumental task, but I'm optimistic I can finish it!

I'm not trying to be annoying with positivity. Really. I just refuse to let go of my optimistic nature. I think my faith in God plays a role here as my worries for our world are bigger than me. I pray that things will improve for our nation and those around the world. I feel there is a greater plan for our world that brings peace and goodness. But my fears and worries will not win, whether I am concerned about all those affected by the Middle East crisis or a friend battling cancer. I am proud to be the optimist in the room and always enjoy company.

I will now go back to snuggling with my niece and dreaming of all the possibilities for her, for me, and for all of you.

Thought 30: Depression, me too . . .

Bob threw me a surprise party for my 30th birthday at one of our favorite Ann Arbor restaurants - Pizza House. Wow, I miss living there! All of our friends were there. I started my 30s going to work for the Detroit Symphony Orchestra as a grant writer, but was struggling a lot with my Crohn's Disease and the complications that came with multiple surgeries. I remember not being very excited about turning 30 as I was not feeling very good about myself. I wanted to be a mother and felt like everyone around me was in the race and I was stuck at the start line. Living with a chronic illness takes over everything and you struggle seeing life outside of that world. The year 2004 was also when my mom was diagnosed with ALS. I will never forget that moment. She and my dad had gone up to Johns Hopkins Hospital to get another opinion about why she was having trouble with her foot and weak leg. I had just left work and was driving through the streets of Detroit to the interstate home. My mom called me and told me the doctors thought she had ALS. I pulled over and knew our lives would never be the same.

I have struggled with getting my thoughts down this week about this topic. I was really blown away by the passing of Robin Williams and learning about all the challenges he was facing in his personal life. We idolize celebrities and forget sometimes that they are just people and have struggles like every one else. My MSW training is in mental health, particularly with children and youth, but I have not worked directly with people in over a decade. However, I do understand mental illness and the great need for it to be given the same treatment as any other physical condition. In my work at The Carter Center, I was honored to share information with donors about Mrs. Carter's work and the Center's Mental Health Program. The need for mental health to have a louder voice and equal attention is not a new issue. Starting a national conversation has been attempted for decades and has been going on for that long among some professional circles. It is just difficult that we only hear the conversation when a tragedy like the death of a beloved star or an act of violence occurs. I just get so frustrated with the continued difficulty of our country to appreciate the importance of understanding the connection between our minds and bodies as one and embracing those individuals that are struggling with diseases of the brain, like depression. It should be ok to talk about it, just like it is ok to talk about Crohn's Disease, heart disease, cancer, and ALS. So I will.

I suffer from acute depression. I am saying it out loud without any fear that I will be judged for it. It is quiet right now, but I continue to take a low dose of Lexapro. It took me a long time to face this diagnosis when I was in my late 20s and early 30s, when I felt like I was drowning in medical problems. I was not comfortable talking about it, and I was in the mental health field. Stigma and feeling like you will be judged for something that is not in your control is an isolating feeling. I have faced some very dark days over the past 17 years for a variety of reasons, but the depression that developed inside me when challenged with a chronic medical condition really made those days more difficult. When I am sad, I cry, a lot. I have had many days when I did not want to get out of bed or would just put my head on my desk at work and feel so exhausted. I felt so alone at times, even though I have always been surrounded with people that love me. Its amazing how you can feel so alone even though you have people standing beside you, loving you.

I have met with multiple therapists over the years, with only one I truly connected with and felt helped me to a better place. I have gone on and off antidepressants over the last five years, feeling stronger some months more than others. I will continue to stay on my low dose as of now since I am feeling in a good place. Is it really making a big difference for me? I am not really sure, but I am doing well, so no need to mess with it right now. I hope to ease off of it after the marathon to see how I am doing. I am not sure the depression I have experienced will be a lifelong problem, but I think taking care of my mental health will always be a priority as I know it can creep up at any time, as life happens.

One thing I have learned through facing depression over the years is I am not alone. I have encountered people in my life that don't think antidepressants are necessary or a good idea and don't understand the connection with depression. Its not about being stronger or getting over the pain you are facing. I know more people than not that have faced depression at some point in their lives or struggle with it on an ongoing basis, some very severely. I have found great comfort in those friends and being able to lean on each other. Mental health advocates have worked tirelessly for decades to reduce the stigma around mental illness and increasing the quality, accessibility, and availability of care. I am all up for igniting the national conversation about the importance of mental health, but let's do it already! I wanted to share my experience with depression as a way to promote that conversation and be another voice to support a solution to what is clearly a national crisis.

Although Robin Williams suffered from depression and addiction, and it appears Parkinson's Disease, it is not the job of the public to determine what led him to take his own life. Nor is it even our business. I will celebrate him as a gifted artist and national treasure. My heart goes out to his family and friends, especially his wife and children. They are the ones that will have to come to peace with his passing and make the courageous steps forward to move on with their lives without him. Because it does take courage and bravery to stand up every day and take on life, even when everything in you tells you to stay in bed. I send my love and eternal thanks to my husband, parents, in laws, and the rest of my circle of family and friends that have stood by me and been there for me, even when I made it very hard to do so. I stand here a stronger wife, daughter, sister, aunt, cousin, and friend. But I am never alone and I feel eternally grateful.

Thought 29: I think I can, I think I can . . .

The year I turned 29, Bob and I decided to treat ourselves and headed to Hawaii for our 5th anniversary. It was an amazing time and a break we both needed desperately. We had a direct flight from Detroit to Honolulu. We spent one night there so we could tour Pearl Harbor the next morning. We then headed to Maui for a week. We are actually thinking about heading back in 2015 to celebrate our 40th birthdays! I think that trip in 2003 was one of the first times we truly relaxed together. I was feeling pretty good at the time and we enjoyed having the chance to isolate ourselves and leave our worries on the mainland. From scuba diving off the back of a catamaran, hearing whales sing underwater, and having a picnic by a waterfall on the way to Hana, we truly enjoyed this time of pure bliss. We have learned since then the importance of getting away together to reconnect. It is definitely a happy thought for me. 

I know it is a common feeling at this point in marathon training, but I am feeling pretty burned out. I have been running consistently and training for something for over a year now and I am just tired. What's funny is, I have not even broken into my longer runs yet. It sure does make the next two months feel really intimidating. I am nervously anticipating my run this Saturday as I will take on my longest run yet - 15 miles. The last two weeks have not been easy for me in terms of my training. I have attempted to run with a local running club the past two Saturdays. My problem is, I am just not up to their pace yet. This issue did not seem to matter the first Saturday I was with them since we were running through Buckhead neighborhoods and there were a lot of people out and about. I just do not want to feel alone. However, this past Saturday was a different story. After about 2 miles into my run, I ended up in neighborhoods I was unfamiliar with near Grant Park and was completely alone. I had a page full of turns and directions to get me through my 10 miles, but I have to say I was nervous. I did not know my surroundings and I was spending more time finding my next turn instead of focusing on my running. 

So, in moving forward, I think I am going to head back to my favorite trail. This would not be an issue for me, except for the fact that just two weeks ago, a young runner was attacked on the trail at miles 19.2 and brutally beaten. I have thought about her and her family a lot and send my love and prayers to them as she fights to recover. However, in being honest, I have been spooked by it. I will never be out that far on the trail, but it doesn't mean it could not happen anywhere. I have grown scared of being out there without other people nearby. It should not be this way. I am proud our community has taken this trail back by storm and refuse to let someone scare us all off from doing what we love. Therefore, my feet will be hitting the familiar pavement of the Silver Comet Trail next Saturday for my 15-mile run. The trail is bustling with people every Saturday morning, so I will be running with them as I go 7.5 miles out and 7.5 miles back. I just want to run and focus on my own race.  

The past two weeks have also thrown a big, unanticipated obstacle in my way. I wasn't sure I was going to share this here, but why should I stop holding back now. I ran 12 miles on the trail two weeks ago and my ostomy started giving me trouble. I realized I had never run this far in the heat and my body was not reacting well. I think the sweat and heat are the problem, but I have to overcome it either way. It happened again the following Saturday when I ran 13 miles. I was over the top frustrated. I am taking some steps to problem solve, but I won't know until I get out there again. I was fine during my 10 mile run this past Saturday, but next weekend will be a big test. I never anticipated this being an issue, but I will not let it keep me from meeting my goal. I am also starting to feel the aches and pains that come with these long distances, mainly in my left leg and hip. Stretching, foam roller, and ice are my best friends right now. I am also going to make an appointment with my physical therapist this week. 

I busted open my new running shoes this weekend for my 10 mile run. These bright baby blues will take me across the finish line in Chicago! My feet are pretty excited to have these happy colors holding them close. My niece Kaylen was with me when we bought these shoes a couple of weeks ago. We also bought some new socks, which included a bright pink pair that I told her I would wear in her honor on race day. 

The best feeling that has come out of the past two weeks of running is knowing I can do this and trusting my legs. As long as I continue to stretch, eat right, and prepare my body, I know I can do this. It does not mean I am not terrified and walking around with a nervous stomach many days, but I know I can run this marathon. Through writing this blog, sharing my experience and thoughts, I am finding my true self. Sometimes I cry, get mad, feel depressed and unsure, but at the end of the day, I can stand up and know I am being my best self. It is important for me to show the world that, but most of all, I have to show it to myself. I want to run into my 40s with confidence and strength, and no matter what happens, I know that wish will come true. 

Here is one of my favorites quotes that Bob sent me this weekend before my run . . . some inspiration for your week!

Check out my personal fundraising page for the Les Turner ALS Foundation - http://ow.ly/ukTos.

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. 

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.