*Warning: This is what I have been dealing with the past few months. I found this very therapeutic to write, but it is really long.
As you can see from my medical history, I had a few really good years in the middle. My nerve/back pain was occasional and bearable and I was enjoying married life and being a mother. I had gotten off of the medicine (for Fibromyalgia) I was taking when we had decided to get pregnant with our first, Hunter, and I was doing really, really well without it. My husband had yet to see me in any intense pain (besides the birth of our children) and it seemed that all the warnings he had been given about "what life could really be like" being married to me was just something that had blown away with the wind.
Six months ago, in October (2 months before my 26th birthday) things just weren't right. I remember when I was sitting on my living room floor folding laundry while my 2 boys were napping. My brother, Sean, had just returned home from his 2 year mission to Japan and he came over with my mom to borrow a movie. I remember being so tired because I hadn't been sleeping well. My arms were "heavy" and hard to move. My tongue would go numb and I honestly felt like my IQ was dropping. Words would not come out how I had intended them to and I was frustrated.
Sean and I were having a conversation when all of a sudden I had this electric surge strike me from my neck all the way down to my foot on the left side. I have never in my life felt such pain (100 x's worse than being "tased" for my EMG). I dropped the laundry and screamed. Tears brimmed in my eyes and embarrassment engulfed me as I had no control over my body. The look on my little brother's face was so sad. My mom later told me how shocked he was that that was the life I lived and was used to. I ran to the bathroom and you could see a red mark that traveled from my neck (the starting point) down my chest, etc. to my feet (the end point) where the electric surge had just occurred.
I am used to nerve pain. I have lived with it for 8 years and because of it, I now have a really high pain tolerance. But this electric shock, it was new and scary and so awful and it happened almost every day for over two weeks.
It was then that I started getting anxiety- what if I got one of those incredibly painful shocks in public? What if I screamed in public? What if I were to give the prayer in church and then get shocked and then scream during the prayer? It is a scary thing when you have no control of what your body does and those feelings of anxiety were so real for me. It was around this time I started to get a feeling that something was really wrong with me.
One night, after a long day trying to take care of my boys with a body that just wasn't cooperating, I was headed to the store and I was telling Heavenly Father about my day and how my body just wasn't working. My aunt within the last 3 or 4 years had been diagnosed with Multiple Sclerosis and I had been reading a lot about it. I could see MS as being a possible diagnosis for me and I wanted to get Heavenly Father's opinion. For those of you who aren't familiar with Mormon beliefs, I believe in personal revelation- that Heavenly Father will answers my prayers to help me with my personal needs. I pulled the car over and told my Father that I thought something was wrong with my body and I instantly felt that was true. I asked if it could be Multiple Sclerosis and I felt strongly that it was a definite possibility.
In Mid October, we were scheduled to have our family pictures taken. My body had been acting weird the morning of pictures, but I was getting used to it. My biggest fear was that I would just looked really fatigued, but if I was wanting an accurate picture of what life was like at this stage/age then so be it. Amazingly, we were able to get dressed and ready on time (I think) and headed up Deer Creek Canyon for some pictures taken by my dear friend (no pun intended) Stephanie Tueller. We had a blast during our session and I remember feeling SO HAPPY. This was a good day!
After pictures were done, we came home and grabbed a pizza. Chuck headed off to do some church work and my mom (who I always bring for family pics- best way to get my boys to smile) was hanging out with us enjoying dinner. Hunter, who had just turned 3, had gotten up to go to the bathroom (yay for being potty trained!) and needed help snapping his pants. I headed into the bathroom, did my motherly duty, and as I tried to walk back to the kitchen table I could couldn't move my legs. It was like my legs were heavy, like cement, and like they were bolted to the ground. I could not move them no matter how hard I willed it.
My mom noticed my struggle and asked what was up. I told her I couldn't move and I just stood there. She asked if it was a nerve spasm and I said no. Nerve spasms are normally very painful and this time I couldn't feel anything. I decided to stand there until I could move again, which thankfully, was about 1 minute later. I got the feeling back in my right leg and then eventually my left. Thankful it was over, I went back to eating my pizza. I got a text on my phone and when I tried to walk to my phone, my legs stopped working again. Soon they recovered, just in time for it to happen again. Chuck came home and I asked if he could call our neighbor Garrick over to help give me a Priesthood blessing. Things calmed down for a bit and then I got a text from my friend Stephanie saying she had a little preview of our family pictures up on her blog. As I grabbed for the computer my legs stopped working again and I was getting really frustrated. Why couldn't I move my legs?
These are the beautiful pictures Stephanie had posted:
When I saw them, I was filled with so much gratitude in my heart. I had had a beautiful day and I have such a beautiful family. My boys were happy and loving life. I thanked Heavenly Father for the tremendous gift of this little family I had been blessed with. How could I be so lucky?! I was instantly filled with optimism and love and the fear and frustration I had about my legs melted away. I will always be thankful for the gift Stephanie gave me that night.
I was so pleased with the pictures that I wanted my mom to see them right away. As I tried to switch from one side of the couch to the other to show my Mom, my legs quit moving and I ended up sliding straight to the floor, with my head stuck between two couches. This really freaked me out and my body started to spasm all over head to toe, like a mini seizure (but not really a seizure). I wasn't able to move both of my arms and I just started to cry. Here I was, crammed between two couches, having nerve spasms all over my whole body and I was unable to move my arms and my legs (it was later explained to me that this was probably an anxiety attack). My mom looked at me sweetly and very tenderly told me it was time to go to the ER. I knew I couldn't object.
After my neighbor Kelly came to stay with my boys while they were sleeping, my mom and Chuck helped me get into the car. I remember laughing about how ridiculous I must have looked laying on the floor like that. On the way to the hospital I told Chuck some very specific things:
1) You will probably hear that I have MS. Brace yourself.
2) I am OK with having MS. It doesn't scare me. I would rather know and have a game plan than not know what is wrong with me.
3) One day, I may end up in a wheel chair. How are you going to lift me into bed? You better work out.
4) There is only one thing that really does scare me. What if one day we move into a new neighborhood and a new ward and all they see is a girl in a wheel chair. And they don't know how capable I am? I don't ever want people to think that I am not capable. MS or a wheel chair will not define me. It might slow me down, but it will not dictate what I do.
When we got to the ER, I was able to slowly walk into the hospital by myself. The second the automatic doors closed behind me I could not move my legs and I was frozen 20 feet away from the check in desk (From this point on, I was unable to move my legs for 3 days straight). The girl looks up and rudely says, "Excuse me, but you have to actually come to the desk to check in!" in which I told her I couldn't move both of my legs and then she freaked out and ran to grab me a wheel chair. I remember a cute little 3 year old girl, so sick, in a princess nightgown, that I sat by. We talked about her favorite books and movies and Disney characters and I made her laugh and smile. I loved helping her feel better and it was better than worrying about my ridiculous legs.
They took me back and asked me a million questions- my medical history, what other symptoms did I have, could I feel this, could I feel that, can you feel these needles, etc. (For the record, when I am unable to move my legs, I still have feeling to them- you can touch/poke me and I feel it all). The Dr.'s main concern was MS and they told me I would have lots of testing done in the morning. I had a brain, neck, thoracic spine, and lumbar spine MRI, a spinal tap, and loads of blood tests performed. My heart was being a bit goofy so I also had an EKG that showed that my heart skips a bottom beat every now and again (seriously, another thing that doesn't work right?!)
My spirits were really positive and happy at the hospital. I made friends with all the nurses, I ate delicious hospital comfort food cake, and was able to laugh about my increasingly weird and messed up body. I was doing pretty good until 3 things happened:
1) I had a couple Dr.'s and nursers giving me a hard time about being a mom- how could you have 2 kids? Why would you want 2 kids at this age? Did you not have plans for your life? (Yes, I have 2 kids. Yes, I love my kids and miss them, and it doesn't help that they are being taken care of by other people while I am here, without them, in a hospital bed missing them. Are we really having this conversation? Also, I am SO thankful that I already have 2 kids here before my body decided to freak out!)
2) You are just too young to be going through all of this. It is such a shame, etc. etc. (Thanks for making me feel great about myself!)
3) ALL OF YOUR TESTS ARE NORMAL- (complete shock and flood of tears)
How can my tests results be normal? All of them? And nothing? ARE YOU SURE?!
What if this happens again?
Do you think I'm crazy?
Are you seriously sending me home without figuring this out?
What is wrong with me that I am actually disappointed that I am normal?
I felt so strongly that Heavenly Father told me something was wrong...
And so they sent me home. Telling me to be happy that I didn't have cancer, or a tumor, or something "big" that would kill me. I had been in the hospital for 3 days before I could walk again. They told me that if it happened again, they wanted me to come back so they could "monitor" me. But there was NO way that I was going to go back to a hospital, where tests had already been done and declared "normal" to lay in a bed and be babysat thinking it was all in my head, when I could do that at home with out the expensive bill to pay.
They wanted me out of there so badly (I'm not going to lie, I wanted to leave too), that they got me up too soon after my spinal tap to do physical therapy so I could meet the requirements to go home, that I ended up getting a spinal headache hours after being home. I had to live with it for 2 days before they said I could go back to the ER to get a blood patch to get it fixed (worst medical experience of my life- a story for another time).
Those were hard days. I was so sure about those feelings I had about something being wrong with me and here I was, sitting at home, frustrated by being normal.
Who does that?
*Up next, MS Part 2- "3 Things," where we talk about life after the hospital and my diagnosis.