Why Now: The true story behind why my diagnosis has remained a secret until now: Part 3

True Love

January, 2011-December, 2013

One week later, my good friend came up to visit me in Galveston. He was my first friend from Victoria that actually made the 3 hour drive & he brought along his friend with him who I had only met a few times before….Scott Spahn.

That first weekend in January led to the start of daily text conversations, endless hours of nightly phone conversations & a relationship that was so wonderful I refused to believe it was even real. In fact, I didn’t. I fought it with every ounce I had in me, but Scott Spahn pursued as if nothing could possibly scare him away.

Scott & I officially began dating in February, 2011 & I was slowly being put back together. That man made me feel things & made me feel a way I never thought was possible. I didn’t know feelings or love like that existed & I knew deep down that if me & this man were going to end up with any type of future I had to tell him about my diagnosis of MS with the reality that my prognosis remained unknown.

I prayed, I cried, I feared so much what would happen after I told him. I had many nightmares that he would walk away from me. Anyone that knows anything about MS knows that the “norm” is not a very pretty future…..

After numerous planned, but failed attempts & many “perfect opportunities” I finally got up the nerve to tell him. I took him to my favorite spot on Galveston Beach & told him I had to tell him something. With trembling hands, pounding heart, crackling voice, & tears in my eyes; I told him everything. I told him that I had been diagnosed with MS 3 years ago & I didn’t know what my future held for me. He immediately started asking questions of concern & offering help to me. He was a perfect angel in accepting me for me even though we were very fresh into our dating relationship. This was the hardest conversation I ever had to have with another individual.

After I finally was able to tell Scott I left it there. I continued to not talk about it to anyone else. I felt he needed to know, but still kept my telling to an “as needed basis” which basically means no one else in Texas knew…

Well, that man continued to lift me up higher & higher & make me whole again as a person. In December, 2012 that same man got down on one knee & asked me to marry him. I eagerly accepted & have continued to be made stronger & confident as an individual.

In August, 2013 I made the decision to apply to be a MS Run the US Relay Runner & knew in the back of my mind this meant I may have to be a little bit more forthcoming with my situation. Finally, when I found out I was accepted as a relay runner in December, 2013 I made the official announcement & let the “cat out of the bag” that I had been hiding for nearly 6 years… I told EVERYONE I had multiple sclerosis.

I’ve been asked so many times, “Why now?” My answer to that is: It is time. It wasn’t before. I have always believed I was told I had MS for a reason. I had always believed I was told I had it for the purpose of inspiring others. Well, between then & now I wouldn’t have been able to do anything with myself to allow that to happen. I wouldn’t have been able to inspire anyone at any level, let alone had any motivation to do anything inspiring for myself. I was just trying to survive.

That is what has changed. I have now accepted my diagnosis. My prognosis continues to remain unclear & that still scares me as much as it did as on April 29, 2008 but that is not what was stopping me from telling people. What stopped me from telling people is I wasn’t ready to be an inspiration. I could barely keep myself motivated just to get up in the morning.

Now, I am ready! I am built back up & stronger than ever! I owe it all to the man that just recently gave me his last name.

I’ve already experienced a select few around me try to tear me back down. If that would have happened to me 3 years ago I would have failed. I may not be here today because I couldn’t have handled it, but I am strong enough now to stand on my own two feet and make a difference. I am doing what I believe in. I am doing what I believe God wants me to do. I am doing what I believe God has planned for me to do all along….the time is NOW!

Why Now: The true story behind why my diagnosis has remained a secret until now. Part 2

October, 2009-February, 2010

The Lord did not answer my prayers. If anything, my MS symptoms alleviated. It wasn’t long before I was offered a job as a personal trainer at a location I had worked at years before I even left home to obtain my master’s. I accepted the job, but unfortunately, it did not offer any health insurance. I remained off of my injections & I continued to keep my MS a secret from the new people entering my life. At this time, having multiple sclerosis became the lowest priority on my list. I no longer felt the need or the energy to bother anyone with that as an addition to me as a person.

I can honestly say that I did make one friend during this time of my life. He was new to the area & had accepted a job near where I was working. We would hang out on occasion & just talk. He needed a friend & he must have known…so did I. I felt distant from everyone else that was currently in my life. I felt as if I shouldn’t bother anyone that already knew me and constantly feared that they were judging me. Not him. He took me with a clean slate & that is exactly what I needed in my life at this time. I admired him & how much he appeared to have his life together & truly, I envied him. I knew I wanted to “have it all together” just like him & unknowingly I took him as an example for what I wanted for myself. The idea came to me that I had to start with a clean slate to everyone around me…I had to start over.

March, 2010-January,2011

I took this idea & ran with it. I began applying for jobs nationwide. I ended up accepting a job in Victoria, Texas & with my parents escorting me I made the 1,300 mile relocation in March, 2010. With a small trailer stuffed with my belongings & my little Hyundai Tiburon my parents left me & my dog Cody in a tiny one bedroom apartment.

When they pulled away, the feeling of abandonment was so overwhelming. It was the scariest feeling I have ever felt in my entire life and yet it was exactly what I wanted; a clean slate. I didn’t know anyone & no one knew me. I could become whoever I wanted!

Unfortunately, being the new depressed girl with multiple sclerosis is not what I wanted to be, so I put on a terrific, “new slate” face! I immediately made a lot of new friends & my new friends were there to help keep my head on straight & distract me from the worries of the world that I had left so far away.

I was enjoying my fresh start so much I figured I would just ignore the MS all together to the point where even after I became eligible for health insurance again, I did not pursue following up with a neurologist. I completely ignored the fact that I ever was even told I had the disease not just 2 years ago.

Well, summer was quickly approaching & my family began planning our 2010 annual MS event & this year’s plan was to participate in the Wisconsin Mud Run due to the MS 150 coinciding with my best friend’s wedding day.   I was reminded all over again that I had the illness & denial was no longer the coping mechanism that would work for me. I was ready to tell someone…someone that I felt would not change how they perceived me.

I decided to share the news with my new Texas best friend. I remember she was heartbroken, scared, & worried. I felt like I had been betraying her by not telling her & feared that she would resent me for it or treat me different. She did not & was my angel for it. She was the first person I had shared my diagnosis with in over 2 years. Unfortunately, telling my friend did not make life any easier.

At this point, I was broken down almost to the point of no return. I kept on a good face for my new friends, but on the inside I was screaming. I made the trip back home to attend my best friend’s wedding where I unfortunately decided to have a mental breakdown. After that day, I knew then that if I didn’t straighten up I would literally not survive. I realized I had a serious problem, but still did not know how to overcome the barriers I was facing. From August of 2010 to January of 2011, I will admit that I almost didn’t make it as a human being.

Despite being well aware that I had issues, I continued to fall closer to rock bottom. I received news that my friend that had originally motivated me to move with a clean slate, the one I had met during that dark time when I was living with my parents decided to end his own life. I did not understand why or how & my rage against God & the world was at its limit. In the back of my mind, I couldn’t help but wonder if I would be sentenced to the same fate. I was terrified at this point of what would become of me, and I was losing my strength to press on.

Immediately after receiving the heartbreaking news of my friend’s death, I was faced with a choice & that choice (although I still do not regret my decision to this day), led to the permanent loss of a very close relationship to a girl I considered to be like my sister. I was heartbroken that what little allies I did have; I was losing…and to top it all off, this all coincided with my 2nd relocation to Galveston, Texas so even my small Victoria support group was no where near. This is when I finally hit rock bottom. This was when I had sunk till there was nowhere else to go.

I believe God knew I had finally met my limit because he sent my big brother to come to my aid in January of 2011.

My brother visited & we had a great week together. Unfortunately, the week ended with a heated argument & him speeding off in a mad rage telling me that I was better than the life I was living & he had faith I could turn it around. He stressed the importance of me doing it quicker than I had been attempting.

He left me feeling abandoned once again & I was left alone with my thoughts. At first, I was heartbroken & angered at my brother’s rage. However, in retrospect I realize it was the greatest thing anyone has ever done for me. I’m sure it was hard for him to be so blunt & forthcoming to me, however this is what saved my life. I re-capped on the last 5 months of my life, and realized how low I had sunk in my standards both for myself & those I was allowing in to my life.

Why Now: The true story behind why my diagnosis has remained a secret until now. Part 1

My mom & me the day I graduated with my master's in Clinical Exercise Physiology

My mom & me the day I graduated with my master’s in Clinical Exercise Physiology

Since, it is now almost 6 years later & I “all of a sudden” decided to tell the world that I have MS I am finding myself often being asked: “Why now?” Why did I not originally speak of it & since I didn’t why did I decide to now?

Well, I can give a remarkable & valid brief version, but I thought my blog would be a perfect place to share the longer version.

You will come with me for the past 6 years since the day I was diagnosed to here & now & perhaps see for yourself why I have internally struggled so much with both the acceptance & sharing of my diagnosis even after 6 years of knowing I had this disease…

Let’s start from day 1….

April 29, 2008-September, 2009

After undergoing multiple diagnostic tests that unfortunately involved some unforeseen complications, on April 29, 2008, I was told I had multiple sclerosis at the age of 22.

I remember & look at this day as the first day of the darkest time of my life. My MS diagnosis was the first event that led into a downward spiral of events that eventually led to my almost complete & utter downfall.  I fell face first on April 29, 2008, and if you would have asked me on that day, I would have told you I thought I had hit rock bottom. The truth is, I hadn’t even come close. For the next 2 ½ years I became so mentally broken down that my MS became the least of my concerns.

When I was initially diagnosed, my family & I were not shy about sharing the news to those that we were close to. All my brothers, aunts & uncles, grandparents, cousins, & my closest friends were informed of my new label. Immediately, my closest family members & friends came together & we participated in the 2008 Wisconsin MS 150 & annually every year then after to raise money for the MS Society. After the initial telling of my story; I stopped talking about it. I won’t say I pretended I didn’t have it, but I definitely did not dwell on the fact that I had it. I only shared the information on a “need to know” basis. I continued to raise money for the MS Society, however I kept my personal diagnosis concealed from any “newcomers” in my life. When we would raise funds, we would always ask the same group of people for donations. The ones that already knew I had the disease that we were riding & raising funds for. Period. That is where it ended…with a select group of people that annually shared in our fight.

As the year went on, I was prescribed a medication called Copaxone (a daily injection) to treat & help slow the progress of the MS. Throughout the next year, only those close to me continued to know of my diagnosis & the bitter complications I was having with the disease. During this time, I became very concerned of what my prognosis would be. My biggest fear was losing those I loved due to the fact that I may eventually become unable to do the things I love & thus becoming a completely different person. I almost dropped out of the master’s program due to my overwhelming fears & personal complications with only a few months remaining in obtaining my degree. Fortunately, I had some exceptional professors & friends that were willing to work with me & I successfully completed the program on time. Unfortunately, in that same month (August, 2009) my world fell apart and I ended up losing my health insurance & as a result, could no longer afford the medication.

Now, 24 years old, without a job, living back at home with my parents, & unable to afford my medication I found myself in such an unwanted position that frankly, I was so broken down that I didn’t even care. I was ready to let the MS consume me & almost prayed it would.

Please come back for Part 2: October, 2009-January, 2011

“The Battle I Nearly Lost” Part 3: The Final Chapter

ImageRunning long distances isn’t just a physical challenge. In fact, it may be even more of a mental & emotional battle that in the end if not dealt with could be what ends up destroying your ambition….

When we arrived in L.A. & were waiting to board the plane to Houston, my husband listened to his voicemails since we now had access to our regular phone service.   He hung up the phone, turned toward me & said, “Hunny, I have to tell you something.” At that moment, I could see it in his eyes…He didn’t have to say anymore…I started crying so hard I don’t even have anything to compare it to. I cried every second from before I boarded that plane in L.A. to after we got our luggage in Houston. I could not grasp the concept that God would take my best friend away from me & how after 16 years I could not be the last person he would see. I was angry.  I was devastated.  I was undeniably heartbroken.

This is what it took to break me down from my running program. This is what led me to wanting to “give up”. All along, I believe God had a plan for me. Everything was coming together perfectly…until this happened….I was mad. I was angry. I wanted to roll over & die. I had given up.

You may be thinking right about now…..”All over a dog?” The answer to that is no simpler than….yes. All over my dog who happened to be my best friend. My son. My saving grace & I will even say…my angel.

The loss of my dog had affected me so much mentally & continues so much that I will tell you that typing this blog is taking me forever because I cannot control crying over the entire situation.

I took the next day off of work to drive down to Mama Spahn who had my little guy preserved so I could see him one last time.  When I got there, at first I could not bring myself in to go & see him and I just waited in another room crying. Mama Spahn held me & tried to give me words to encourage me, but nothing was helping. The mere fact that my best friend was gone & knowing that only his soul-less body awaited me, no words could relieve the way I was feeling. 

I eventually had 4 hours of time with his body & cried to him & talked to him. Even after my attempt at closure I still felt like I could not go on. We drove him to the local human society & dropped his body off to be cremated so he could be with me always. When we got back to Mama Spahn’s &  it was time to go home she gave me another hug & out of nowhere & with the run being the last thing on my mind; she simply told me that I had to keep running. She went on to say, “You can’t let this stop you. Life has got to keep going for you. Life moves on. You have a man now that Cody was able to see you safely into his arms.”…and she gave me 3 more words that meant everything to me…”Run Baby Run”. 

I wish I could tell you the next day I got up & began my training program again, but I would be lying to you. I did not run for another 5 days. I would go to work, come home, & stare off into space & cry over the lack of sound or presence in the house.

I had many conversations with my husband telling him that I no longer had it in me. I was so emotionally drained & physically drained from the lack of sleep that I had given up…not only the running, but everything. I had no drive for my job, no drive to eat right, no drive to train, no drive to talk to anyone. I just didn’t care about anything….

He reminded me of the first time I sat him down & shared with him that I had MS. He said, “You told me way back then that you believed that you were diagnosed for a reason. I think we found the reason. This is your chance to inspire the world.”

I started running again….I was MEANT to be a relay runner…for so many more reasons than just to run…I almost lost this battle, and to be honest I think I’m still fighting it, but now I not only run for those with MS, but I run for me, and I run for the thing that I just recently discovered kept me going….kept my battery alive….my best friend since I was 12 years old….

Running long distances isn’t just a physical challenge. In fact, it may be even more of a mental & emotional battle that in the end if not dealt with could be what ends up destroying your ambition.

“The Battle I Nearly Lost” Part 2: The Bittersweet Week

ImageRunning long distances isn’t just a physical challenge. In fact, it may be even more of a mental & emotional battle that in the end if not dealt with could be what ends up destroying your ambition…

The week of our wedding turned out to be a nightmare. Not only were we dealing with the stress from last minute wedding details & family flooding in from out state, but I had a 16 year old dog named Cody that up until the 5th of February was the healthiest 16 year old dog you would have ever met. In the middle of the night on February 5th, my little friend began having very violent seizures that were uncontrollable. I was completely helpless. All I could do was cry, scream, hold him in my arms, & pray that he would snap out of the seizures he was having. When there was no more than seconds between the violent seizures I had no other choice than to find an emergency 24 hour vet clinic.

Long story short, the 24 hour clinic got my little man tranquilized & stable & recommended him to a specialist down the road. It was now the 6th of February just 2 days before our wedding & I did not understand why this was happening. I was mad at the world & I will admit I was upset with God.  At the specialist clinic, I was faced with the decision of paying a $4,500 bill to do diagnostic tests to figure out what was exactly going on with him (brain tumor or encephalitis), let them monitor him another night in the clinic, or the dreaded option of putting him down. I decided to go with NONE of the options they suggested to me. I opted to let them keep him for the rest of the day, monitor him & treat him, & then send him home with me with some prescriptions. I told everyone I just wanted him home with me. I knew I would be leaving in 3 days for our honeymoon & I wanted every last moment I could spend with my little friend & I thought he would feel the same.

With that decision, I was able to spend 2 wonderful nights with my little man semi-cuddled together in bed. He was unable to control his urine by this time so he was swaddled in old towels & laid in his own bed & then laid in my bed next to me. For both of those nights, I woke up to see him crawled out of his bed nuzzled up under my chin & those moments with him I will cherish in my heart forever. That was my sign he needed me just as much as I needed him.

Well, the wedding proceeded & my little man was unfortunately in bad shape, but as usual he was a fighter &  he was able to attend (hidden in a back room) & my new husband & I were able to get our picture taken with our little boy dressed up in his little tux.

After the wedding, the emotional battle continued. We were scheduled to leave for our honeymoon & didn’t know what to do with our very sick boy. We went back & forth with what to do. Some suggested even putting him down, but in my heart I could not see myself doing that out of pure “convenience” because we would be out of the country for 2 weeks. I knew the ONE and ONLY option for my little man was giving him a fighting chance & God bless my mother-in-law because she accepted the challenge of giving him that chance for me & watching over him while we were away. I knew this was the only way I would have a chance at seeing him when I got back home.

We left our little guy in her care & said our goodbyes with the dreaded fear that this may be the last time we would get to see him. We left for our honeymoon to Australia & New Zealand. We purchased phone minutes so that we could call Mama Spahn every other day to check on the little guy & see how he was doing. We made our last phone call 2 days before we would arrive back in the states & the report was good. We knew we would have our hands full when we returned back home with a dog that now had no control of his urine & bowel movements, but we agreed as husband and wife that the little man deserved every bit of our love & care when we returned home. The point was he was still alive & the thought of not seeing him again had vanished from my thoughts.

Well, all was well & I was getting so very anxious to see my little man. In Sydney, I knew that only two more flights separated me from Texas where my dog was anxiously waiting for me……or so I thought…

Stay Tuned for Part 3-The Battle I Nearly Lost…

“The Battle I Nearly Lost” Part 1: Deciding & Anticipating Applying to be a MS Run the US Relay Runner

ImageRunning long distances isn’t just a physical challenge. In fact, it may be even more of a mental & emotional battle that in the end if not dealt with could be what ends up destroying your ambition…

I chose to apply to be a MS Run the US relay runner at such an inopportune time in my life some would say…maybe even myself if you happen to catch me on the wrong day. 

I knew when I was considering applying to be a relay runner,  I was only months away from marrying the man of my dreams & being on the opposite side of the country from my family & close friends  that 100% of the planning would lie on my shoulders.  Despite the challenges I had already foreseen, I shared my ambition with my fiancé & he was extremely supportive & encouraging at the thought of me participating in a cause that meant so much to me.

As a couple, we agreed that I would apply to be a runner both knowing that the next several months would not be easy, but we looked at it as an opportunity to work as a team that would only make us stronger as a unit both before & after our wedding scheduled for February 8th.

There was a waiting period of 4 months before I would know the results of my application. During this time, I tried to focus on wedding planning & it definitely was overwhelming all alone.  In the back of my mind I had no idea how I would begin a long distance running program, raise funds for MS, and continue planning our wedding & our “other side of the globe” honeymoon, but I didn’t care. I knew I wanted to do it ALL!

Well, the time came & past for my phone interview, and I still had to wait another month before I would hear if I was a relay runner or not. During this month, the real emotional & mental battle officially began.  I started thinking about the details….what being a relay runner actually meant. During my phone interview, I learned that I may be on TV, radio stations, in newspapers & the question came up if I wanted to share that I had the disease that I’d be running & raising funds for. I’ve kept it “quiet” from most of the people in my life. I had so much of an internal battle going on I didn’t know how to deal with it that I just decided I would deal with that decision later.  My faith led me to believe God would let me know how to handle it.

Well, I got my letter that I was accepted as a runner & all of the questions & worrying were washed away….all the signs were there…I was MEANT to do this. I was MEANT to be a runner. I was MEANT to be diagnosed & tell my story and there was no better time than the present….the time was NOW…& I jumped in face first eager to take on the world!

I immediately wrote my running program that would begin on December 15th & end on the first day of my relay segment….May 5th. It consisted of 5 months of the greatest amount of running I’ve ever attempted before. The first week began with 5 days of running 3-10 miles each day to & ended with running 6 days a week of 12-28 miles each day.  It was a journey I began & didn’t stop to look back.

My training dedication started off fantastic!!!  I stuck with my plan exactly; never wavering away from it. Even if I was sick; I still went outside & did what I was supposed to do even if it meant jogging slow or even walking. As soon as I was about 80% I was back to my regimen without fault once again. I stuck with my running program up until the week of the wedding….

Stay tuned for Part 2…

 

 

 

 

 

Receiving a Diagnosis

Part-III

Receiving a diagnosis that you have a permanent, debilitating disease is devastating. No matter what the diagnosis, you have to endure the words, “You have _______.” Those words are probably the hardest 3 words you may ever be faced with in your life or have already had the dreadful experience of being faced with. For me, I heard the words, “You have MS.” They were the hardest 3 words I ever had to endure.

It’s never good news to receive a permanent diagnosis, and how a person deals with it usually varies among each individual. I believe that everyone that has received such a diagnosis remembers everything about it down to the last detail. At times, it might be “blurry” because you may have tried to forget or block it out of your memory especially if your initial reaction was denial, but no matter what you can recall that day, that time, those terrible words.

My neurologist appointment was at 10am on April 29, 2008 to receive all of my test results. I took the entire day off of work and school.  My mother traveled three hours to accompany me to the appointment. I was trembling as we walked into the clinic. My mom held my hand in the waiting room as we patiently waited for my name to be called.

When I heard my name, I slowly rose from my chair and we followed the nurse back to the same room I was in just a few weeks prior. The neurologist walked in & I was expecting him to say something, some sort of news that would help in calming my fears. Instead, he said he didn’t have all of my results yet. He never received my spinal tap results, so he picked up his phone to call the lab. As he read my results & the “normal range” I already knew before he even hung up the phone I was going to hear the dreaded 3 words. Although, I didn’t realize how awful I would feel until I actually heard him say them.

When we were excused out of the office to give it time to “soak-in” my mom held me in that hospital hallway as I cried every tear I had in me to shed.

If you ever hear or have already heard the words “You have _______,” just know that you are not alone. It may feel like it at the time, but you are not.