Tag Archives: Doctor

Idaho? Oh Balls.

7 Jun

The last time I started a new school I spent a good amount of time crying and begging my mom to let me be home schooled. This time I was out of tears. I had spent over 2 weeks crying. September came and I had resolved to attend school without protest, but also to make no effort whatsoever to make new friends. Which proved to be quite easy since all the girls seemed more interested in mocking my clothing, hair and make-up instead of getting to know me. I’ve never been a “blender” and decided to keep my identity. I wasn’t going to change myself for these vapid girls.


Just like every high school there were the obvious groups, except at Meridian High School they all kept to their own clique. There were the jocks, the nerds, the punks, the pot-heads, the emos, the pretty girls, the juvenile delinquents, the choir kids, and the band geeks and the drama freaks. I couldn’t find a place among any of those groups if I wanted to. I’m not athletic, I’m intelligent but not nerdy, I didn’t smoke pot, I didn’t wear black and listen to punk music, I wasn’t bound for prison, I was pretty but would rather pluck out my eyelashes than hang with those pretty girls, I wasn’t in choir, I didn’t play an instrument and I had no desire to make friends with the up-beat drama freaks. No, I was determined to mope about at home, stay depressed and just get through the school year. And I was sure about 1 thing. I would not make any friends, because in a year or 2 I would have to say goodbye. Because that’s how my life went. I’d settle in, make great friends, form a life I loved, and then I would be uprooted and have to start over. Well if I never started, I’d never have to start over. In my head, that made sense. (Yes, I would have emotionally fit in with the emo kids.)


I did pretty well when it came to not making friends. My health wasn’t exceptional so I missed school often, and if you don’t talk to a person they don’t become your friend. The only time I struggled was at lunch time. I used to have such a good time with all my girlfriends in Lake Stevens at lunch. We’d sit together, laugh, share food, gossip… Now I had 30 minutes of being alone with my food. For the first few days of school I ate in a hallway, sitting up against a locker, but people talked to me. Mostly outcast freshman, I didn’t want company. So I took my lunch elsewhere.


For 2 months I ate in a stall in the girls bathroom. I know what you’re thinking, I think that too. Sometimes I would cry and sometimes I would finish eating and start on homework. Again, I am well aware of how bizarre this was as I was the one in there.

Btw, do you have any idea how many bulimic teenage girls there are in this world? If I had to guess, at least 25% of the girls in my high school were. I would hear girl after girl throwing up while I tried to keep my lunch down. And if they weren’t throwing up, they were shooting up, snorting up or generally getting effed up. Those girls I reported, I had to do something. I couldn’t just be the weird girl eating her lunch in the bathroom while criminal activity was taking place. I gave myself a higher purpose. I was an undercover cop busting girls abusing substances. Except without the cop part. And my cover was a bathroom stall. And I would just tell the front office after I was done eating and they had left.

One time when I reported some girls for drug use in the bathroom, the office woman asked me, “How do you always happen to be in there when they are doing drugs?” I replied matter-of-factly, “I eat in a stall.” She cocked her head to one side and frowned, “Oh child, have you no friends?”  I sarcastically replied, “Oh yes I do, I just have a sensitive bowel.” She was not impressed and that response probably discredited furthering reports.


Time passed.


In December I accidentally made a friend. Our teacher changed the seating assignments and I was placed by this girl who always gave me dirty looks. I don’t know why she did, I had never said a word to her. For some reason, she decided to talk to me that day. Come to find out she was completely unaware of her facial expressions. That’s just what her face does when she’s not thinking. We ended up having a lot in common and after 3 full months of staying mum, it felt nice to talk to someone.  She asked me where I sat at lunch (I avoided that question) and said I was welcome to join her friends. And so I did from that day on. (Years later I told her where I had been eating lunch before she invited me to eat with her. Immediately she looked puzzled, nearly sad perhaps, then she couldn’t stop laughing at me.) I had made a friend!  And soon I started making more.

I created a good circle of friends in Meridian, Idaho. But unlike in Lake Stevens where most were girls, I only had 1 girlfriend. Kim. She meant the world to me. She saved me from loneliness, sadness and all the other negative-nesses I was inflicting on myself.

We had a mutual love, Brownie Batter. (Yes, I was blonde for a while…)


The rest of my friends consisted of 6 teen boys affectionately referred to as “The Guys”, they were like brothers to me. By January I was happy with life in Idaho.

But as my general happiness with my social life started to rise, my physical health declined. It was declining so fast that by the last quarter of my sophomore year I went to school once a week to get assignments and spent the rest of my time in bed doing homework, resting so I could see my friends on the weekend. This period of time was difficult for me. The decline was so rapid that I had little time to adjust to my new limits. I frequently over did it with activity and would experience extreme pain, fatigue and occasional paralysis in my legs as my body tried to recover from the physical damage I inflicted up on it. I’m not saying I went out running or mountain climbing. I would pay heavy consequences for walking around the mall for an hour. It was hard to adjust to this new lifestyle of limits, physically and especially mentally.

My brother would stay home from school to take care of me on my bad days, as my parents could not miss anymore work. During this time my brother and I grew even closer than we already had been. I depended on him for so much. He’d bring me my pills, make my breakfast and lunch, he’d watch endless movies with me and tolerate my afternoon habit of watching Star Trek. And when I would lose the use of my legs, he’d carry me around wherever I needed to go. Even to the bathroom. He was amazing. Seriously, a girl couldn’t ask for a more perfect brother, or best friend.


Soon my regular doctor was unable to help with my pain management and became very concerned as my quality of life declined, so he referred me to a Muscular Dystrophy Specialist in Boise.

Enter the best doctor ever! He was dry and sarcastic, a bit of a tool actually, and slightly intimidating but had a soft spot for people with MD, especially children. He was amazing at what he did. He also introduced me to the community of MDA, thank God for MDA!



Scottish Eyebrows meets Downy Body Hair

18 Aug

Miracles happen! I scored an appointment with Dr. N.B a few months after the first paralysis. Dr N.B. was holding a clinic in Boise and was able to squeeze me in. As I said, Dr. N.B. is a rock star mastermind in all things Mitochondrial and this was a blessing to meet him and talk about my issues.

We started off with blood work, piece of cake. By the age of 9 (yep, had a birthday) I could have drawn my blood, of course no one let me until I was 16… Shhh. Then my parents and I sat around a large table in a conference room with Dr. N.B and his female colleague (who holds a Doctorate of Philosophy) the wonderful N.K. The cool thing about Dr. N.B. is he addressed me when talking. He didn’t ask my parents how I felt or what my body was doing, he relied on my information. He let me tell my story and I liked that. We discussed everything from physical ailments to mental struggles as well as my family medical history. As I stated in my previous post my Aunt P was diagnosed by Dr. N.B with Mitochondrial Myopathy (Ragged-Red Fibers is the strain) and this made me predisposed to have a Mitochondrial Myopathy.

A Short Explanation of Mitochondrial Myopathy:

Every body  consists of cells. Every cell contains a mitochondria. The mitochondria is the “power plant” of the cell. It stores and distributes energy when the body requires it. When a myopathy is present the “power plant” malfunctions. It does not store properly or distribute when needed causing the body to use other sources for energy. This causes muscle breakdown and the release of lactic acid. It can also be exhibiting through muscle weakness or exercise intolerance, heart failure or rhythm disturbances, multi-organ failure, dementia, movement disorders, stroke-like episodes, deafness, blindness, droopy eyelids, limited mobility of the eyes, vomiting, and seizures to name a few things. Symptoms vary from person to person and in severity. Mitochondrial Myopathy is a hereditary disorder passed down through the mother’s bloodline. It is known to skip generations, anyone could be a carrier and the carrier’s don’t always show symptoms.

At the time of this appointment I was exhibiting muscle weakness, exercise intolerance, fatigue, muscle cramping, muscle pain and spasms, migraines, muscle wasting bi-product in urine (lactic acid), and lower extremity paralysis. All those symptoms line up with a Mitochondrial issue except for the paralysis. That’s where Dr N.B. said I was special. He let me know this was just a guess as he was scientifically puzzled, but perhaps the paralysis was my body’s way of protecting other organs. He told me the human body is capable of amazing things, and this isn’t out of the realm of possibilities.

When he told me this I imagined my body and brain being separate from my soul. My brain was intervening to prevent me from pushing forward. My body was guarding my very existence by forcing me to lay still for hours, to allow me to rest and replenish. (Was it my body though? Or was it God? I think it was God using my amazingly crafted body as his tool.)

After the rundown of my symptoms and family history it was time for a physical exam. I put on a hospital gown and walked the length of the exam room. He did the usual strength tests that I failed miserably. He had me stand on one foot, balance, stand on the other, touch my nose while balancing and added in “quack like a duck”! He had a sense of humour too =) Then I got up on the examination table and he began feeling my muscles, examining the knots, feeling the current spasm I was experiencing in my leg and then he started rubbing my arm. I looked at him curiously wondering why he was softly rubbing my arm and staring at it thoughtfully.  Almost like he read my mind he said matter-of-factually, “You have very downy body hair.”, and then went about the exam. …..OK this has stuck with me my whole life. That comment right there. Downy body hair. What, like Sasquatch? I was an 9-year-old girl whose body was failing her and now I had to deal with knowing I have downy body hair? Who says that to a person? HONESTLY!?! Every part of me wanted to tell him right then and there that his eyebrows would put Bert’s to shame. They were so thick and bushy and intentionally twisted upwards at the ends. They peaked out over his glasses, staring at me. With the right wind, they could take flight. Ugh, still to this day I am self-conscious about my arm hair. If people touch my arm I immediately think they will take note of the downy hair and either be repulsed or feel an overwhelming urge to pet me…. Moving on.

The appointment went very well that day (minus acquiring a complex about my downy body hair). We left with a wealth of useful information and a peace in knowing we have a world-renown doctor on our team. It was clear to us that there is no cure for Mitochondrial Myopathy but the prognosis was not dark from my prospective. If this is what I had, I could manage it. The next step was a muscle biopsy to confirm the mutation and an extensive eye exam. A road trip to Portland, OR was in order once we could get past of the red-tape put up by “Idaho’s Poor People Insurance Program”.