Chapter 3

It has been a while since I have posted.  I apologize for that.  I will try to pick up where I left off at the end of Chapter 1.

I stopped my clinical hours for school, and I kept 2 classes.  One class I knew I could get away with missing sometimes, the other I was able to miss as much as I needed to.  I was thankful for understanding professors, but I had always been a determined student so it played a toll on my emotions to put my health first and my school second.

I am so glad I did.  Right after I slowed down, I went downhill, FAST.  I had been using a wheelchair for long distances only, usually WalMart trips when I was feeling really sick and weak.  Suddenly though, my body was fighting me and I barely had the energy to lift my arms long enough to brush my teeth or hair.  The wheelchair was a necessity.  Around the house though, I was okay for about another month as far as walking around.  Before too long, every time I took a step my muscles in my legs began to cramp in a way that would take me to my knees.  It made it impossible to keep walking.  I suddenly found myself consonantly on the couch or in the bed.  Even when I felt better, my body didn’t and it was going to rebel.  I discovered that my body wasn’t capable of doing simple tasks, and I certainly wanted to know why.

I began to hound my doctors for answers.  I went to doctor after doctor and had test after test.  At first, the best guess the doctors had was MS, but my test results didn’t confirm this.  After an EMG, the neurologist changed the “best guess” to neuromyotonia, commonly known as Isaacs Syndrome.  I was more fond of the thought of Isaacs Syndrome than I was of MS, but I didn’t understand why I couldn’t get a solid answer, why I was only getting guesses.  I was frustrated beyond belief.  Neuromyotonia did become my official diagnosis (though not confirmed) for a while, and I was beginning to be treated for it.  I did have the symptoms, all of them.  However, the diagnosis just didn’t sit right with me for some reason.  I now know why.   God was letting me know it wasn’t the answer.

Emotionally, I was beginning to feel like a bit of a wreck at this point.  Somehow I was still okay though.  I remember some horrible emotions, but I always knew God was going to get the glory and He was going to bring me through.  Some of my closest friends let me know that they were very scared about what all was happening, and I would tell them about the peace He had put in my heart.  I knew something was coming.  He was going to work.  I just knew it.  That’s not to say that I never thought I would ever be able to be without the wheelchair.  When buying our car, we made sure it was convenient for the wheelchair.  It’s safe to say I didn’t think things would be peachy.  However, I knew things would be okay.

Many things would knock me down emotionally, it always felt like one after the next.  Luckily, I was able to catch my breath and gather myself before the next.  I think that people forget that when someone is going through something so uncertain medically, it also makes them weak emotionally.  I remember a few people asking me if I had repented of all my sins and a few others asked if I had been right with God.  These comments absolutely crushed me.  The last thing I needed was for others to suggest that the reason for all of this was because I was sinful and so I had caused this.  I knew in my heart why it was happening.  It was because God was at work and was carrying out a plan I was unaware of.  That’s all I needed to know.  Even with knowing that, these types of comments tore me up.

The wheelchair always brought up emotions.  I loved that little wheelchair because she allowed me freedom.  I also hated her because she reminded me that I was sick and didn’t have independence.  I  remember a couple of times in my wheelchair that actually made me stronger.  At one point, a worker at a store saw Philip pushing me in the chair and said, “I sure wish I could have someone push me around all day”.  We were both steamed.  I was upset because I didn’t want to be in that chair, I wanted to walk around all day.  But, mostly, I was upset because I was still able to walk myself to the bathroom, etc.  There are those out there that can’t.  Of course they want to walk around all day.  Another time, an older lady saw me in line at a store.  Philip had stepped away for a bit, so she looked down at me and stepped right in front of me in line, knowing that I couldn’t do anything about it.  I wouldn’t have been as surprised if she was a younger, but an older sweet looking lady?  Oh and the looks you get in a wheelchair….wow.  Looks for kids never bothered me, it was the adults that made me want to cry.  Many times I would see people pass by me staring and turn around still staring.  Or, I would hear them comment as they pass.  All sorts of comments.  “Kids sure are getting lazy and giving up easy these days”, “Oh my gosh, did you see her? She’s young.  What do you think is wrong?”, “Wow, she’s too young for that mess, just get up and walk for yourself”.  A word of advice for those who have never been in a wheelchair: 1.  Don’t stare.  The person does notice.  2.  Don’t comment no matter how softly you think you do it.

-Maegan

Chapter 2

In retrospect, I should have seen something coming. She would get sick often and would stay sick for longer than anyone I knew. Even a cold put her out of commission for days on end. Trips to the doctors office became the norm. It seems as if every time things were looking alright, she would crash. And crash hard.

By the time she finally slowed down on the school work, her body started to give up. Everyday she would be mentally and physically exhausted and constantly ran a fever. As the days passed, getting out of bed and even walking became difficult for her.  I still remember a difficult decision fell upon us one day in March 2009 when we drove to the store and had to buy a wheelchair. At first it was only intended for extended shopping and grocery store trips but as I watched her struggle more and more to walk even the short distance from one end of the house to the other, I realized that wheelchair was going to receive more use than we thought.

The part that killed me the most was watching the internal struggle she faced as her strong will fought her ever weakening body. No one wants to admit defeat when dealing with their own body or mind, especially when no one can tell specifically what is causing this downward spiral. Why would a previously healthy, active, young woman be suffering like this?

We sat face to face with a number of doctors, listening to each and every theory of what they believed was wrong and were ultimately left feeling more hopeless as each test came back normal. By early spring, I had watched my wife undergo a spinal tap, cat scan, MRI, x-rays, sonograms and enough lab testing to last a lifetime.

…And this was just the beginning.

-Philip

The Beginning (Chapter 1)

Disclaimer:  This is a short overview of how things started out.  It will take us forever if we go in detail for EVERYTHING, so we plan to add details as we remember them and as we have time.

Philip and I got married in May of ’08.  That summer I planned to babysit for a family and enjoy my summer with my new husband until I started classes again in August.  About a month after we got married I began to get very tired, but thought that it was just from watching three kiddos.  However, it just got worse.  It got to the point where I would come home after work, take a nap, eat supper, then go to bed again!  Not long after that,  I also began to get nauseous.  I wasn’t sure what was going on, but throwing up certainly made me realize something was wrong.  Soon I began to notice that I was running a fever so I stopped working (didn’t want to get the kids sick) and I decided to stay at home and rest so I could get over whatever it was.  It obviously didn’t work.

I ended up getting so sick that I couldn’t even get off of the couch for days. It was then I decided it was finally time to go to the doctor.  At our first (of many) visit, the doctor was pretty concerned.  I was running out of breath from just talking and I had been quite ill for longer period of time than a normal virus would have taken.  He decided to run lots of tests and we went back a week later to get the results.  I had mono.  This explained everything but the shortness of breath, so he ran more tests.  Everything but the mono test came back normal.  Long story short…mono knocked me down and I was not able to go back to work or doing anything else that summer.  I rested up in hopes that I would be okay to start my first semester of graduate school.

I began school at the end of August (’08).  I was enjoying classes, my clients, supervisors, etc.  Everything was amazing, except for the fact that I couldn’t seem to keep up or ever have enough energy.  I began to have fevers quite a bit.  Eventually I was having fevers a couple of times a week at least.  The entire semester I seemed to get sick often.  I thought it may have been because of being around the kiddos and because my immune system was compromised by mono.  When looking back at my doctor records, I was going to the doctor with something new at least once a month, but usually two to three times a month.  It was getting ridiculous, but there never seemed to be any direct reason for me to think something else was going on besides getting sick a lot and having mono, so I pushed on and finished out my first semester of graduate school.

Our Christmas break was amazing.  It was my first time to not have a job and not be in school at the same time.  I relaxed a lot.  I thought that if I rested and allowed my body to heal completely from all the illness’ I had in the six months before, then I would be healthy for the Spring semester.  Philip and I spent lots of time together and were sad when it was time for me to go back to class.

As soon as I started back to class in January, I realized I was not as healthy as I thought I was.  I started running a fever almost every single day and I became leery about working with clients as a result.  I had no clue what the fevers were from, but I did worry I could give something to others.  Everything started to become a big blur.  I did whatever I had to do, but I was not mentally present at any time.  I was feverish, tired, and out of it.  It all began to frustrate me.  I had always done well in classes and on tests, but I suddenly couldn’t seem to remember anything or think clearly at all.  Less than a month into the semester I began to not be able to sleep.  I was so tired, but i couldn’t sleep more than a couple of hours a night and I was lucky if I got a couple of hours.  Things really seemed to be going downhill, but I honestly wasn’t paying attention to what my body was trying to tell me or how bad things were getting.  I just knew I had to do well in classes and with clients.  However, I wasn’t doing well with either.

I went back to the doctor and he couldn’t find any reason for the fever, memory loss, inability to sleep, or the various other symptoms (there were lots of symptoms I haven’t mentioned, it would take forever!).  I continued trying to get things done for school, but others around me were noticing that my health was getting out of hand.  I thought I had been hiding it well, but I obviously hadn’t.  I remember the last time I was getting clinical hours:  I was at our local Head Start working with groups of kids and I was supposed to be teaching the children seasons, but I am sure I was just confusing them.  I would hold up a pictures of a season and tell them what I thought was the correct season only to find out that I was totally wrong.  I would tell them to point to a certain picture but have the picture faced towards me instead of them  (all they could see was a blank card).

No matter what, I couldn’t seem to snap out of it.  I started slurring words and having word-finding problems, but I tried to hide it.  My supervisor, however, was watching me with my clients and she didn’t buy it.  I was embarrassed, ashamed, and scared.  All of my symptoms increased very fast.  I was slurring my words so much that I just started not talking as much.  My supervisor ended up talking to me about how I was keeping up in school and how my health was.  She recommended me cutting down on clients or stopping them all together.  She let me know that my health was much more important than school.  I have to admit that I didn’t like hearing that at all, because I knew it was the truth and what I needed to do.  I had been in denial about what had gone on until then.  I didn’t want to admit that something was so wrong that I could no longer live my “normal” life.  I thought that surely if I had enough drive I could make it, but I couldn’t.  I ended up dropping all of my clients.

After I began to admit to myself that something was very wrong I suddenly realized that class wasn’t going well either.  My first realization of this was that I had no clue what book went with what class.  I had just been going, sitting though class, and that’s it.  I had no clue what the topics of discussion was about much less what the class itself was suppose to be about.  A while after I realized things were getting worse then Philip began to talk to me about dropping some of my classes.  I fought him like crazy, but I constantly had my supervisor reminding me that my health was more important than school (I am very thankful for her reminders now).  I finally gave in and dropped half of my classes.

I cried for a couple of days afterward.  I was scared because dropping my clients and classes forced me to realize that I was not okay and made me face the truth.  My academics had come before my  health the entire time, but now it had to make a rushed and unwanted transition because whether I wanted it or not, my declining health was taking the front seat.

-Maegan

Introduction

In the Summer of 2008, our life began to slowly change.  We had no clue what was coming, and we certainly never knew everything would be changed forever.

Together, we have endured more than we could have ever imagined in our first year and half of marriage.  However, God continuously gives us hope and strength, even when we don’t have the strength to ask for it.  We both wanted to write down all that has happened so far so that we would always remember and never take God and the life he has given us for granted.  We also felt God has been putting it on our hearts to tell others about what He has done so far.

We will be updating this blog frequently to tell our story.  Posts will often be broken up into “his view” and “her view” in order to share what we were experiencing individually.  The blog will be written chronologically as we recall events that took place.  Because some situations were exponentially more painful than others, it may take us longer to relive and transcribe these events.  We will post notices as past listings are updated so that you can keep up with what all has happened.  Please keep in mind that the past has been extremely painful for us and we have become accustomed to updating people on how we are doing casually instead of in-depth.  We are going to try to fight the urge to skip over the most painful events and give you a look at the raw bones of what all we went through and the emotions that we felt.  This may not always be possible because of the many emotions and experiences we had, so of course we will  not be able to always let you know everything that has happened (especially in an uncensored way), but we will strive to.

Please know that this blog is not intended to be a sob story.  It is intended to record what all has happened so that the two of us will not forget, and also to share with others so that they too can have hope in times of weakness and despair.

-Philip and Maegan