Dermato-what?

Dermato-what? How My Life Changed From Year 31 to 32

by Guest Author, Dusty Deines

On my 31st birthday on August 21, 2014, life seemed pretty normal for me.  Typically, another year doesn’t mean anything special to me.  If I’m being completely honest, I had to ask other people if I spent time with them on my actual birthday last year.  My birthday was on a Thursday.  Not an ideal day to do a lot of things.  I do remember being given my best birthday gift ever, when hours before my birthday I was asked, and gratefully accepted the offer, to be my newest nephew Walker’s godfather.  I also remember what I was doing the weekend after my birthday.

On August 22, I headed east to Kansas City to spend the weekend with my good buddy and MDA brother Tim.  On Saturday, the 23rd, we joined up with other MDA family members to play in the “Just Drew It” Softball Tournament in Shawnee, KS in honor and memory of our other MDA brother Drew Anderson, who had a form of muscular dystrophy and passed away due to an accident in October of 2011.  Outside of being a little out of shape and rusty, and our team struggling a bit at times (we went 1-2 if I recall correctly), I was able to play to the best of my ability at the age of 31.  Fun times were had by all, and the weekend ended up being a great way to end the summer as I was approaching busy times again with school and high school sports on the horizon.

Anybody that really knows me, knows that I have spent the majority of my adult life fighting neuromuscular diseases.  When I say fighting, I mean many different things.  Be it volunteering at Muscular Dystrophy Association Summer Camp or participating in MDA fundraisers such as the Labor Day Telethon/Show of Strength or more recently, the MDA Muscle Walk.  You see, I’ve seen too many people deal with these debilitating conditions, so I have made it one of my life’s missions to help find cures for them.  MDA covers over 43 diseases under their umbrella.  The first one I was made aware of was Duchenne Muscular Dystrophy (DMD) when I was just a kid.  My cousin and best friend Adam Sahlfeld was diagnosed with the disease early in his life.  If I remember right it was around the age of seven.  I would have been eight at the time.  I watched Adam fight that disease, which is the most common and most severe form of muscular dystrophy.  With DMD, Adam was not expected to make it past his 20’s.  They didn’t know how strong he was.  He lived to be 23 and fought his battle with grace and dignity and I never heard him complain about the hand he was dealt.

The second neuromuscular disease I saw show up around my loved ones was Amyotrophic Lateral Sclerosis (ALS).  What most people reading this will associate ALS with is either Lou Gehrig or people dumping ice buckets over their head.  The first thing I think of when I hear those three terrible letters together is my Uncle LeRoy, who was one of the healthiest, most active people I knew, and succumbed to the disease after a fight of nearly two years in late November of 2003.  Three days before my 31st birthday, I gladly participated in the Ice Bucket Challenge (you can see it here) after I was nominated by a friend through MDA, WIBW’s Melissa Brunner.  I participated, because I knew that no matter the amount of money that was raised for the disease, the amount of awareness it raised for ALS and other neuromuscular diseases could not be overstated.  I’m glad to see it has returned this summer with the “Every August Until A Cure” movement.

Since being rudely introduced to the first two types of neuromuscular diseases, I have seen too many more.  Through Adam, I was made aware of all of the opportunities to help MDA.  My first MDA experience was at the 2003 MDA Labor Day Telethon, as I tagged along with Adam and family a few months after I graduated college and had moved to Glen Elder, which was just 10 miles away from Adam and Beloit, where much of my mom’s family still calls home.  In the summer of 2006, I volunteered for the first time at MDA Summer Camp.  If you want more details on my camp experience, you can read my blog here, or you can watch this outstanding documentary by fellow camp counselor Keyshawn Garraway.  At camp, I’ve worked with kids that have DMD, Charcot-Marie Tooth Disease (CMT), Spinal Muscular Atrophy (SMA), Bethlem Myopathy and a host of others.

As I stated before, on my 31st birthday on August 21, 2014, I seemed to be in good health.  I rolled through the start of the school year as I always do.  I covered the football games on Friday nights on the radio (it’s still hard for me to wrap my mind around the concept that I get paid to talk about sports), went to high school volleyball matches when I could, and enjoyed Saturdays (and even one Thursday night) at Bill Snyder Family Stadium with the K-State football team.  I took part in my newest godson Walker’s baptism in Hutchinson in September.  My favorite baseball team, the Kansas City Royals, even blessed me with a run all the way to Game 7 of the World Series.  However, in the middle of all of this fun I was having, my world was about to take a quick detour to somewhere I never expected.

I have already told you that I have spent the majority of my adult life fighting muscle diseases with those that are close to me and directly affected by the diseases.  So, what if I told you that after ten years of fighting for a cure, that I would come down with a muscle disease of my own?  It seems hard to believe, doesn’t it?  If it is hard for you to believe, multiply that by infinite for me, and welcome to my life since early October of 2014.

Looking back, October is when I really started noticing changes in my body.  I remember talking with my cousins Riley and Parker and some friends of theirs at one of the early October K-State football games.  They had played in a high school football game the night before, and I remember telling them that when I woke up that Saturday morning, my body felt like I had played in the game as well.  Things were getting more difficult for me to do.  Getting out of bed wasn’t just jumping up from a laying position anymore.  It was more turning over on my stomach and using my arms and knees to push myself up.  As a Catholic, things that I did at mass were becoming more difficult, for example, when genuflecting, I found myself using the side of the pew more than normal to bring myself back up to a standing position.  While all of this was going on, I found myself being stubborn.  When I’m going through things like this, I tend to believe that I’m going to get better.  Finally, in mid-November, as my arms started feeling as though I had swam about 100 laps in a pool and my legs felt like they had run a marathon (clearly I had not done any of those things), I decided it was time to see a doctor.

Between my first visit to the doctor and Thanksgiving, which was only about two weeks, things started becoming drastically worse.  It was hard for me to get out of bed.  Standing up from any sitting position was becoming extremely difficult.  If I was on a higher surface, it was easier, but still not naturally easy like it should have been.  I had plans to go to Newton to be with family for Thanksgiving.  I had pretty much cancelled those plans, because I knew if I was in the shape I was in at that point, I wouldn’t be able to take care of myself there, and I was reluctant to ask for much help.

While my symptoms were getting worse, I seemed to be far from an answer.  The doctors in Beloit clearly could tell something was wrong, but blood work, MRI’s and CT scans had ruled out many things that were on their mind, including a viral infection.  My blood work did reveal that I had very high liver enzymes, which made them schedule an appointment with a liver specialist, Dr. Vernon from Salina.  I also had an appointment scheduled with a neurologist in Salina, Dr. Diep.  Both of those appointments were scheduled for December 2.  I found this out the week leading up to Thanksgiving, so I knew it would be about another week before I would know anything.

The Monday before Thanksgiving was when I knew things were not going to get better any time soon.  I tried my best to keep all the struggles I was having to myself.  It was difficult on that day though.  I had gone to lunch over the noon hour, and when I returned to the radio station, I couldn’t get out of my car.  My Mustang that rides very low to the ground was getting harder and harder to get out of, and that day before lunch was the last time I would be able to stand from a surface that low for months.  I called my coworker Dan to see if he could help me out of my car, and as we were attempting that, I ended up on the ground.  I didn’t have the strength in my arms to get back up.  I ended up needing two people to help me into my chair.  Fortunately, our upstairs neighbor at the radio station, Kim, is always willing to help, and my experience with lifting kids at camp with muscular dystrophy actually helped me explain a good way to get me off the ground and into a chair.  I powered through the rest of the day at work and knew I would need a different vehicle if I was going to get home.  I called my friend Troy and we set it up so that I could use his SUV for a few days.  When you get out of that, you’re basically already in a standing position.  Looking back, it might not have been the smartest thing for me to be driving anyway, but I could still do everything I needed to behind the wheel.

The next day showed my next struggle, and began the process of me not being able to do much of anything independently.  For about a week, I had decided that it would be easier for me to sleep on my couch.  It was a higher surface for me to be able to get up from in the morning.  That Tuesday morning, getting up by myself never happened.  As I was trying to get up, I slid to the floor.  I had no strength to get myself up.  I texted work and said I didn’t have the strength to make it in.  I laid on the floor for about an hour and decided it was time to get up, so I put in a call to my good friend Jesse to see if he could help, because I knew he was off of work that day.  His girlfriend and my friend Alicia came to my rescue shortly after.  I was pretty surprised by the amount of strength she had, as she helped me back up to a sitting position on the couch and I was able to stand from there.

While all this was going on, I knew that Thanksgiving was on the horizon.  I had already taken Wednesday off because I had a follow up appointment at the doctor in Beloit.  My parents had offered to come pick me up after the appointment and head down to Newton on Wednesday night for the Thanksgiving gathering at my sister Tricia’s house.  I decided on Tuesday night, it would be best to stay at Jesse and Alicia’s in Beloit and then go to the doctor’s appointment and meet my parents after as planned.  At this point, being by myself was out of the question for me.

We did as planned, and after getting to Newton on Wednesday night, things did not start off the greatest.  I went to the bathroom, and when I was finished, for some reason the toilet backed up.  By instinct, I reached for the plunger.  Looking back, I don’t know why, because I probably wouldn’t have been able to fix the problem anyway as my arm strength was deteriorating fast as well.  As I reached for the plunger, I slipped on a rug and fell backwards into the shower/bathtub.  For the third time in as many days, I was on the ground and unable to get myself up.  Thankfully, my dad and brother-in-law heard me fall and were quickly there to help me back up.

The rest of Thanksgiving went off pretty much without a hitch, other than the fact I already knew I would need help up from certain surfaces and getting out of bed in the morning.  By that point, I actually needed my dad to help me with putting clothes on at times as well.  That continued after Thanksgiving, as I decided it was in my best interest between then and December 2 to go back to WaKeeney with my parents.

We got back to the farm south of WaKeeney on Saturday after Thanksgiving.  I found a chair that I could sit up from when I got there.  That worked for a few hours.  I was looking for a little inspiration in this time, and my parents had yet to see the movie God’s Not Dead so we decided to watch that.  After the movie was over, I was stuck in the chair and could not get up.  When all was said and done, it would be nearly two months before I would sit up from a low surface like that by myself again.

As December began, I was at my worst.  I had gone through all of these things, and I still felt like I was miles away from an answer.  I knew I had a muscle problem.  I began to think about things in a more negative way, but I knew that there was a reason God was putting me through this.  I can honestly say that during this process, I prayed for myself for the first time in my life that I can remember.  Usually, my prayers are reserved for others.  I always thought it was too selfish to put up prayers for myself.  However, I knew I needed saving.  I also knew from a post I had put on Facebook that I had a lot of other people behind me and praying for me.  For a moment, I remember hoping that I didn’t have ALS.  I mean, what kind of cruel fate would that be for me.  Then after thinking longer and harder about it, I knew it couldn’t be that, because I’ve seen people go through that terrible process.  It typically doesn’t take a person down as fast as I was going.

Through the rest of the process, God sent me what I can only call a group of angels on earth.  On December 2nd, I met Dr. Diep in Salina.  That would thankfully be the start of me turning the corner back to good health.  Dr. Diep had just moved to Salina two weeks prior to me meeting her.  She was previously at John’s Hopkins in Washington, D.C.  Within about ten minutes of seeing me, she was about 90% sure that I had one of two diseases.  She ruled out ALS, because she could tell my problems were with my muscles and not my nerves.  I had more lab work done in Salina that day as well.  I came back to Beloit and met Dr. Vernon.  That appointment lasted all of five minutes, as he told me that my liver was fine, and we could rule that out as a problem.  We decided to stay in Beloit that night, and once again, Jesse and Alicia were there to help me.  What they’ve done for me during all of these struggles can never go unmentioned.  They’ll just say “that’s what friends are for”.  What friends do you have that are willing to sleep by your side overnight to help you up if you need to go to bathroom, for example?  What friends do you have that when you get the worst calf cramp that you’ve had in your entire life and can’t do anything about it yourself, they’re there to help you through it?  Those are just a few examples of what they’ve done for me.  They’re both angels on earth for me as well.

The next day, December 3rd, I got a call from Dr. Diep’s office to go back to Salina to do more lab work and a muscle biopsy.  All I ended up doing was the lab work, because Dr. Vernon was the surgeon for the biopsy and the biopsy could not be done until the following Monday, this appointment would just be a consultation, and he had done that on Tuesday in Beloit.  After the lab work was finished, we headed back to WaKeeney that evening.  On Thursday, December 4th, I waited throughout the day to hear back from Dr. Diep.  The only thing that had been done so far, was that I was put on a steroid (Prednisone) that would hopefully help bring my strength back.  After only being on that for a day, I was told to stop taking it, because it could change the results of the biopsy I was about to have.  Finally around 4:30 in the afternoon, I received a call at the house from Dr. Diep’s office again and was told to head to Salina ASAP, as I was to be admitted to Salina Regional Health Center (SRHC).

Someone telling you that you’re going to be admitted to the hospital is not the news anybody wants to hear.  All of the bad thoughts that are associated with that start going through your mind.  I was not at all excited to hear the news that I needed to be admitted to the hospital, but there was one thing that showed up in my blood work that nobody had looked for before.  The Creatine Phosphokinase (CPK) level in my blood was off the charts.  A normal person has a CPK level of around 256 units per liter (U/L) at its highest.  My CPK level showed up at 25,940 U/L.  The high CPK shows a protein breakdown in the body and there was concern that it could spread to my kidneys, so Dr. Diep wanted to get me on IV’s and flush out my system.  That was the reasoning for being admitted into the hospital.  From that point on, I had no idea how long I would be in the hospital.  At first it sounded like it would be about a week.  Little did I know, that week would turn into two months.

After being admitted to SRHC on December 4th, the first week was a blur.  Dr. Diep was able to get my biopsy pushed up to Friday, December 5th as an inpatient procedure.  The muscle biopsy would confirm what my actual problem was.  It was narrowed down to two things: Polymyositis or Dermatomyositis.  Both are autoimmune inflammatory muscle diseases.  So, I had confirmed that I was dealing with a muscle disease.  The muscle tissue was taken from my left thigh during the biopsy and sent off to the Mayo Clinic for observation and analysis (the results wouldn’t come in for about a month).  More testing came with EKG’s and an MRI of my spine.  Also, on the 6th, I had an electromyography test done (EMG) to confirm that I wasn’t having any nerve issues.  Dr. Davis, the other neurologist in Salina assisted, along with some students from KU Med in Salina.  I was happy that my brother Brad had come to visit that weekend as well, as he assisted in moving me from my wheelchair to the “operating” table.  Throughout the process, I’ve had many other people watching what the medical professionals are doing with me.  They always would ask if I was comfortable with that.  My answer was always this: “I don’t want to be in this position, but if me going through this can help someone else out in better understanding their future profession, I’m glad to help.”  These people were spending their time helping me, it would be selfish for me to not want to help them in the process.

Without getting into too much detail, the biggest thing I learned in the first week in the hospital is that the human body can bring in and let out a lot of liquid in a short amount of time.  I was hooked up to an IV that was pumping basically just water and sodium chloride through me for over two weeks.  There were times during the day that I was going to the bathroom every 15 minutes, and I wasn’t drinking a whole lot.  With all that water going in and out of your system, I was starting to lose quite a bit of weight as well.  With my disease, it was difficult to swallow dry meats and things of that nature at times, but with water I could get it down, so I knew my weight loss didn’t have anything to do with my appetite.  In the meantime, regular blood work was done each day, and after four days, my CPK level was down to 11,210.  I looked like I was heading in the right direction.

After some encouragement with the CPK level going down, I was starting to feel a little more enthusiastic.  However, it would stay steady for about a week with not much improvement and didn’t get under 10,000 until December 18th.  I started to realize this was going to be a longer haul than I anticipated or wanted.

My first week in the hospital also opened my eyes to the other angels that are walking this earth.  Prior to this experience, I never really thought a whole lot about what nurses and aides did.  The same could be said about Physical Therapists.  Truth be told, I really didn’t even know what an Occupational Therapist was.  I call it unintentional ignorance really.  Within a few days, I had gained an unbelievable new perspective about how special all of those people are.  I’ve come to the point in my story where I’m going to start mentioning more names.  If I leave anyone out of this, that is not my intention.

One of the first people I remember meeting in room 401 at SRHC was a young man named Brandon.  Brandon was studying Physical Therapy and was studying Shelly, a PT at the hospital.  I worked with them daily while I was on the regular floor.  I appreciated that time, because I could tell Brandon loved what he was doing and I looked forward to those times in my day.  During that time, Shelly suggested that I would be a great candidate for the SRHC Rehabilitation Unit.  Honestly, at that time, all I cared about was getting better.  I had no idea what I needed to do to make that happen, but I just trusted that everyone that was caring for me at SRHC knew what was best for me.  I had a chance to do a session on the Rehab floor one of the days.  It seemed like a place that could help me.  It also helped that there was a familiar face there who was a PT, my high school classmate Amber.  Through the recommendation of Dr. Diep and the therapists, I was transferred to the Rehab unit on Friday, December 12th.  I hoped that would get me going in the right direction, and with time it did.

I could write a whole separate blog about the people on the Rehab unit.  From Dr. Hutchinson, who has devoted his time to this unit alone, to the nurses, aides, PT’s, OT’s, Recreational Therapists, Speech Therapists and all the other people that make that place run as smoothly as it does.  I ended up being with them all for another seven weeks, so in that time, they really became like another family to me.  The actual experience of Rehab is probably boring for people to read about.  It was three hours every day of intense therapy, with three 30-minute sessions of OT and two 45-minute sessions of PT.  Some days had recreational therapy mixed in.  In the beginning, my OT session in the morning, which consisted of getting dressed for the day, took nearly the entire 30-minute period.  By the time I left, we had to come up with new things to do in OT because it only took me about 5-10 minutes to get dressed.

Through the process, I never lost the ability to walk, so the focus in PT was on my core and helping to get me back to where I could stand up from a sitting position and getting up from bed.  Keeping my head and neck up was extremely difficult as well when I was doing exercises in therapy.  All of that improved as my condition improved, but it took some time.  The first week I was on the Rehab floor, I showed some improvement in my muscle testing, but there were two weeks between Christmas and New Year’s that I didn’t seem to make much progress.

My group of Christmas Day visitors.Anybody who really knows me, knows that Christmas is my favorite time of year.  Celebrating my Savior’s birth and being with family have always been special to me.  2014 was the first year I can remember that I was not at mass in WaKeeney on Christmas Eve.  Celebrating Christmas in the hospital was not what I had planned, but fortunately I had a support system that was there for me.  My whole immediate family was there to visit on Christmas Day, as well as many cousins.  In fact, the support from everywhere was overwhelming during the whole process.  I had nearly 80 people come visit me and I had more than 60 cards that were sent to me while I was in the hospital.  I got a prayer quilt from the St. John’s parishioners, and the amount of names on that card that sent up prayers for me blew me away.  I can’t ever thank Aunt Mary Ann and Uncle Jerr and my cousins Trina & Anita and their husbands Brett & Joe enough for taking time to do things for me while I was in the hospital as well.  Like I said previously, Christmas in the hospital is not ideal, but while I was there, I saw things going on around me that helped me put my life into perspective.

The day I was admitted to the hospital, our MDA family lost a member.  My friends Matt (who has MD) and Sara lost their mother, Terri, to a battle with cancer.  It hurt more that I couldn’t be there for them than the problems I was dealing with.  Just two days before Christmas, Matt’s best friend, and another member of our MDA family, Josh Burdick, passed away from his fight with muscular dystrophy.  I couldn’t imagine what it must be like to be in Matt’s position.  I remember thinking, he’s been dealt a bad enough hand already, why should he have to endure all of this loss.  In between all of that, bad news hit from home.  Sidney Doane had been in a serious car wreck and was in the hospital with serious brain trauma.  All of these things were so much bigger than my problems.  Add to all of those things the ten years I’ve spent around kids who can’t come back from their muscle diseases.  Who was I to feel sorry for myself?

In the end, I used all of those things to inspire me.  Things started turning around for me as the calendar turned to 2015.  My prednisone dosage was increased and I was put on another medicine called Imuran.  I started being able to do things that I could not do before.  On January 7th, I was officially diagnosed with Dermatomyositis (DM).  The muscle biopsy confirmed it, and I had some rashes in different places that were consistent with the disease.  On January 8th, I was able to take my shirt off for the first time in OT in the morning.  It seems minor, but it was a major win for me.  On January 9th, I got out of the hospital for the day, as I had an appointment set up with a rheumatologist in Wichita, Dr. Shaver, who confirmed the DM diagnosis.  He also told me that there would be another treatment that could help speed up the process of me getting my strength back.  IVIG infusions were scheduled for January, February and March from there.  Things were looking up for me, then on January 10th, I had a bad day.

If anyone has ever had a lumbar puncture (spinal tap) done, you know it is not a fun process.  I knew that my doctor wanted to have one done on me, but I was not given much of a warning about it and I was taken out of my PT session to do it.  At this point, I still didn’t have the strength back to move much at all while I was laying down.  They want you to lay in the fetal position as they put a needle in your back to extract the fluid from your spine.  They tried to do it from my bed.  You know how I’ve talked about angels on earth through this blog?  I’ll always hold a special place in my heart for my nurse DiAnne who stood by my side and held my hand to comfort me through what was the most uncomfortable process of my life.  I was stuck with that needle in my back three times in my bed on the Rehab floor, with nerves getting hit and shooting pain through my tailbone and down my sciatic at times.  They could not find a clear spot because my spine had naturally fused in the areas they were trying to extract the fluid from.  I was finally moved to the radiology department, and two pokes later, they finally found a spot.  Following the lumbar puncture, you are instructed to lay flat for at least an hour to avoid getting headaches as a result of the procedure.  I did that, but unfortunately I still got the headaches.  They stuck around for a couple days, then Dr. Hutchinson ordered a blood patch to help solve the problem.  Thankfully, a few days later, the headaches were gone, and I could get back to focusing on getting better.

Rehab family. Upper left: Dr. Diep; Middle left: OT Tiffany; Lower left: PT Amber; Upper middle: Aide Tre, Nurse Sue; Upper right: Nurses Lorelle and Ashley; Lower middle: PTA's Susan and Nahtahna; Lower right: PT TamraTherapy continued with all of my PT’s and OT’s that helped get me going the right way.  In PT, in all honesty, I dreaded my sessions with Tamra.  She was the best kind of crazy anybody can be though.  Even though I dreaded it, I knew everything she was doing with me was going to pay huge dividends in the long term, so I never wanted to say no to those activities.  Amber, Shelly and Linda helped me get back to where I needed with the legs and core as well, with help from Susan and Nahtanha and others.  In OT, Kathleen, Tiffany, Vicky and many others helped me get my arms moving again.  For a while, my arms seemed to be behind my legs, but with time they came back.  The therapists are just part of what kept me going in the right direction.  My nurses and aides always made sure I was taken care of.  I already mentioned DiAnne, but Sue, Regina, Becky, Donna, Karol, Ashley, LeAnn, Jenny, Pat, Ariel, Diana, Lorelle and all the others played such an important part.  I can’t remember all of the aides, but I know Tre and Ian made a big difference in encouraging me to keep the fight up.  Jean, Jordan and Kaitlynn always brightened my day as well.  I know I’m forgetting some, but I met so many great people that were so important in my recovery while I was on rehab.

I began my first IVIG infusion on January 12th.  Each time, it is a three day process, and each day, the drip takes around four hours to finish.  Dr. Shaver wasn’t lying to me when he said that would speed up the recovery process.  In about a week, I was accomplishing new things every day.  By January 21st, I finally got into my bed for the first time without any assistance.  I was blessed to get a pass out to watch my nephew Dylan play basketball in Marion on January 24th.  My siblings were amazed at the progress I had made when they assisted with getting me out of my wheelchair.  Just two days later, on January 26th, I had my best day yet in the hospital.  I was informed that my liver enzymes had come back to normal and my CPK was at about 1,600 U/L.  Even better, for the first time since late November, I stood up from a chair unassisted.  I honestly don’t think I’ve ever had or will ever have the same emotions running through me than I did when I got out of my wheelchair by myself for the first time.  Two days after that, I was informed that I would be discharged from SRHC the following Monday.  Goodbyes from the rehab family started after that from the people that would be leaving for the final time and would not see me again.  Hugs from the nurses, aides, PT’s and OT’s meant the world to me, as I had always hoped I was a patient that they appreciated.

This shows the amount of weight I lost.From SRHC, I would go back with my parents to WaKeeney to do outpatient therapy at Trego County-Lemke Memorial Hospital (TCLMH).  My parents came to do some home training with the Rehab therapists on January 30th, and on February 2nd, I was discharged from the hospital, with a CPK level of 952 U/L.  From there, I had to go back to Wichita and Dr. Shaver’s NP, Ruth Busch for a follow up appointment.  Finally, the evening of February 3rd, I was back at home in WaKeeney, just less than two months after I left to be admitted to SRHC.  From that point, I started on the path to returning to my normal life.

During this whole process, I’ve had different sources of motivation.  Unfortunately, the day before I left SRHC, I was devastated to hear the news that we had lost another member of our MDA family.  Josh Mansheim lost his battle with MD on February 1.  Yet another reason why I stayed away from feeling sorry for myself.  Josh was just one of many inspirations I have had.  While back at home in WaKeeney, I saw a scripture passage on Sidney’s Facebook update page, and I started turning to some of the passages about strength to make my way through the final stages of therapy, which began for me on February 4th and ended on February 27th.  The passage that has now become my favorite verse in scripture is below.

2 Corinthians 12: 9-10: but he said to me, “My grace is sufficient for you, for power is made perfect in weakness.” I will rather boast most gladly of my weaknesses, in order that the power of Christ may dwell with me.  Therefore, I am content with weaknesses, insults, hardships, persecutions, and constraints, for the sake of Christ; for when I am weak, then I am strong.

On February 6th, I went to my first high school basketball game of the season.  I had the chance to watch my cousins play for St. John’s/Tipton in Tipton and pick up wins against Wilson.  On February 7th, I went to mass for the first time since November 29, 2014.  Our priest, Father Charlie, led his homily that evening with “You’re prayers have been answered.”  It seemed as though he was talking directly to me.  I answered: “I know!”

Thankful for all three of these people looking after me with everything they have. My parents and Dr. Diep.On February 11th, 12th & 13th, I had my second round of IVIG at TCLMH.  That ended on Friday the 13th, and I was surprised and blessed to have my entire family come visit me that weekend.  The amount of people in the house went from three to 17 in about a 45-minute span and we had a great weekend.  Other milestones included kneeling again at church on February 21st, driving for the first time and getting off of the floor by myself in therapy for the first time on February 24th.  I thank my PT’s Monica, Renee, Kim and Shelly and my OT’s Debbie and Anna who helped me continue on the path to recovery. On February 27th I was blessed to have Jake Gill do a benefit concert for me to help with some of my medical bills at the Paramount Bar in Salina.  I decided from there, it was time for me to return home.  I got back to Glen Elder the morning of February 28th, and went to mass at St. John’s again for the first time since early November.  As the calendar hit March 1, I was by myself, living independently for the first time since November 24, 2014.  On March 2, I returned to work for the first time since November 24.

March was a fun month for me, as I got back to work just in time for postseason basketball.  I saw the St. John’s/Tipton boys and girls win Sub-State championships on March 7th, and on March 14th, they both played for the State Championship at United Wireless Arena in Dodge City.  The girls won the championship over Moscow and the boys lost a tough one to Sharon Springs.  That day in Dodge was a nice consolation prize after having missed the entire regular season on the radio.  I finished March with my final round of scheduled IVIG infusions on the 23rd, 24th and 25th.

Through the tough times in life, you should always count your blessings. This picture says 1,000 words about my blessings. #KCMuscleWalk #FamilySince then, I’ve been blessed to see and do many things.  I had Easter dinner at Aunt Colleen’s in Beloit in April.  In May, I had a fun time with friends and colleagues at the KAB Sports Seminar at Kauffman Stadium.  I got to emcee the Award’s Banquet at St. John’s High School and was blessed to have them present me with some money that they raised to help with my medical bills as well.  I participated in the MDA Muscle Walk on May 16th, with a new cause to walk for: myself.

It’s been a normal summer for me in 2015, outside of one thing.  Due to not being fully back to my normal strength, I decided not to attend MDA Summer Camp.  It was my camper Tevin’s final year at camp this summer.  Missing camp hurt more than anything I went through while I was recovering from DM.  I did make it on the last day to send everyone off, and even if I was only there for a couple hours, it was good for my soul.  Hopefully, I’ll be able to return to camp in 2016.

Dealing with DM still has its daily challenges for me.  I get tired a bit quicker when I’m busy throughout the day.  I’m still on prednisone, which increases my appetite.  When I left the hospital, I had lost a lot of weight.  I checked in around 165.  I’ve gained 50 pounds since then and am right around 215 right now.  Everything I deal with today sure beats the alternative though.

My fight and ultimate win over DM has been without question the biggest challenge of my life so far.  I’d be naive to think that I did it alone.  I’ll never be able to repay my parents for what they’ve done for me my entire life and especially over these last nine months.  My siblings, Tricia, Brad and Christa have been there for me through it all as well and I can’t imagine going through this without them.  My brothers-in-law and nephews have lifted me up as well.  The outpouring of support, love, prayers and financial help I have received through this time has overwhelmed me.  I always knew I was surrounded by many great people, but I never expected this kind of backing.

I wrote this blog to give back to those people.  To show what I went through.  I don’t write this so those that are reading feel sorry for me.  I don’t write it for praise.  I’ve had many people tell me that they are amazed at how determined I was to get better.  I don’t see it that way.  I don’t feel like I’m special in any way in that regard.  I did what I had to do just to live life.  You want inspiration, look at the people I’ve mentioned earlier in this blog.  Look at Terri Eager who beat cancer at one point before it became too much.  Look at Josh Burdick.  That kid beat cancer while having muscular dystrophy.  Look at Josh Mansheim.  He lived his life to the fullest while fighting MD as well.  Look at Sidney Doane who continues to show what miracles are all about.  Those people have inspired me to continue to fight and live my life to the fullest.

In closing, I think I’ll definitely remember what I’m doing on my 32nd birthday.  I look forward to spending it with family as my godson Walker just celebrated his 1st birthday on August 13.  We’re gathering in Haven this weekend to celebrate with him.  After all I’ve been through, I couldn’t ask for a better gift than to be with him and the rest of my family.  You never know how much time you have on this earth.  If I can offer any advice, it would be to cherish every second of it.  To all of you reading this, I offer a big thank you, and God bless!

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Hi, this may be interesting to you: Dermato-what? How My Life Changed From Year 31 to 32! The link is included below: https://understandingmyositis.org/dermato-what-life-changed/ --- Myositis Support and Understanding is a 501(c)3 nonprofit organization.