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It’s Time To Do It Right, Lace

13 Jun

Do It Right. That’s my motto.

I pride myself on “Doing It Right” in my life but after a morning of meditation, I acknowledged that I have been falling short. I have to make a change. No more half measures. I refuse to be a hypocrite.

How can I go around telling my friends, family and strangers to “Do it right!” when I am not actively giving it 100%? And I so love to tell them, “DO IT RIGHT!”.

Hence, I am discontinuing parts of my blog, My First Hand and Living the Re-Deal, and beginning to write a book. I have real content to share that goes deeper than a 5 minute read once or twice a week. I need to be able to write without leaving parts out “because it would be too long for a blog post.” I also need to stop hiding behind this blog. I know I am hiding. It feels safe here in the world-wide-web but its high time I step out of this comfort zone.

See, me living today is a miracle. Every day I spend on this earth without pain and paralysis is a blessing. God healed my body and because of him I have the opportunity to write my story and share it in its entirety. And my inspired story deserves a book. I am sure of it!

I will leave up the posts in The First Hand and Living the Re-Deal but there will be no more added in the future. It’s time I Did It Right, and started putting my life down on paper. (My mom is going to be so happy about this.)

Not to worry though! You can still look forward to my ramblings, rants and interactions with my son and husband which will be posted in Present Gameplay, as well, I will be putting more into my Cards of Life and The Players.

I’m kind of excited actually. I feel I can give more to my readers now that I am streamlining my content and I hope you enjoy following me nonetheless.

Cheers!

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!

 

 

Rainbows

31 Aug

I sat in our family’s van crying in protest. “Please don’t make me go, please Momma. I can’t make friends again. We’ll move soon anyways, please Momma. I can’t do this.”  My mom took my hand softly, trying to calm me. “We won’t be moving honey and you have to go to school. You have to try. We don’t have any other options Lace. It’s the first day for everyone and you won’t be the only new person, that should be comforting.” Comforting? Really mom? No, not feeling that emotion now. I sat in the van trying to dry my tears, prolonging the inevitable long walk to the office where I would get my class schedule and map of the campus. I didn’t want to start over. I didn’t even know if my body could handle going to school, it couldn’t 2 years ago…

It was drizzling misty rain as I walked ever-so-slowly to the main office. I gave the woman my name and she handed me my class schedule and the map. “Welcome to Lake Stevens High School, Lacey. Please let us know if you need anything today, we’re here to help!” Ugh, she was so chipper. I thanked her without making eye contact as I stared at my classes, walking toward door.

First up, Physical Education. GYM!? No, this wasn’t right. Oh great! I should have turned and told the plump, chipper lady that I can’t take gym but I didn’t think she’d believe me. No teen wants to take P.E. and I looked totally “normal”. I didn’t want to cause a stir while the office was full of other new students and bustling staff. The last thing I wanted was to draw attention to myself. So I left the office and headed to gym class. Lucky for me it was only the course orientation and nothing was expected from me physically that day. I was removed from P.E. the following week when they found a place for me elsewhere; the attendance office with the plump chipper lady.

The first day went by fine, lonely and long but fine nonetheless. It wasn’t until a week later that a girl in my English class noticed my last name and told me it sounded really familiar to her. I don’t know why it did, I’d never seen her before in my life until I came to this class. The next day she came to English class armed with a wealth of history, history her and I shared…and a picture of the two of us in adorable Rainbow outfits (kind of like girl scouts but in miniature form). As soon as I saw this picture I fully remembered who she was to me. Our families had attended the same church when we were little girls and their family happened to be the neighbors of my grandparents’ life-long friends. We had spent countless childhood hours together. I remembered playing dolls with her, being at rainbows together, eating popsicles on her Grandma’s porch…she was my first friend. Wow, miniscule word much!?

Upon catching up with her, she invited me to join her at lunch and meet some of her friends. I was excited! I really hoped I could reconnect with my first friend and make friends with these other girls. And I did.

It wasn’t long before I was accepted as one of the girls, there were 12 of us give or take a few. We were an awesome group, self-named “The Lake Posse”. Every girl was attractive, all of us had a unique quality to contribute and held a level of popularity around the school. Even I had gained some popularity at school soon after joining the group of girls, and it felt nice to be liked.

I know what you are thinking. Something along the lines of the female characters from that movie “Mean Girls”. No, we weren’t “plastic”, we weren’t mean or overly conceited. Well maybe 1 or 2 of them, but nothing cruel. We were fun girls, some of us a little more crazy than others but we were all nice girls; accepting of all types of people. Sure we had our “mean girl” moments when a fellow friend needed some backing-up, but that’s just friendship if you ask me.

I even got my first real boyfriend that year. He was an instant crush since the first day of school and the day he became my boyfriend, I thought I had one the life lottery. Oh how I loved him! I had never felt that way about a guy before, I truly did love him. Well, as much as a 14-year-old knows about love and what it is, I felt all that.

Everyone in my life was understanding of my muscle issues. No one ever questioned the validity of my illness, although they made it quite clear that they missed me when I’d be absent from school and I should “work on that”. Haha, they were wonderful. I did my best to manage my disorder but high school was very demanding on my body. I think the key reason I passed the 9th grade was because of my awesome group of girlfriends and that special guy. Knowing I had these people to meetup with really drove me to push on and find a way to operate through the pain. And I did more often than not.

I have countless memories from my freshman year, it was my favorite year of high school. In fact, it’s one of the favorite years of my life. When I think back I don’t remember pain or other physical struggles, although they were ever-present. All I can think of is how much I loved my life in Lake Stevens. I loved the family I had nearby (grandparents, aunts, uncles, cousins). I loved the friendships I made. I loved the rain and the smell it would leave in the air long after it had stopped. I loved Seattle and the diversity of people the city drew in. I loved the beauty of Washington, all the nature that surrounded me was breathtaking. Sure my family struggled financially but money is irrelevant to me when love is so abundant. I didn’t care that we were living in the projects, I would have been extremely happy living in Washington for the rest of my life. Washington is home to me, it always had been and it always will be. I truly hoped we would stay there. Of course, that wasn’t the case.

My dad took a job in Meridian, Idaho two weeks before I was to start the 10th grade. I was heartbroken. My girlfriends wanted to send me off in a happy way, so they threw me a surprise going away party. The boy my heart would always belong to as well as every friend I loved showed up. Each one of them gave me a special gift that represented a memory we had shared together. They even made me a scrapbook full of all the fun memories we had shared as a group. They truly were amazing friends…how would I ever replace them? I gave them all tearful hugs, hating that this would be the last one we’d share for a while. I lingered in the embrace of the guy who was no longer my boyfriend but that I would love for years to come…and said goodbye. I didn’t know when I would be back again, but I was determined to not let these relationships disappear.

We packed up everything once again and relocated our lives back to Idaho. This time I was not welcoming or understanding of the move. I was angry and more sad than I ever had been. I left my heart in Lake Stevens with everyone I loved. I was completely set against making friends or setting up a new life. I hated it. Idaho sucked, the people were weird and seemed to all look the same, and I didn’t like the smell. It smelled like dust and occasionally cow poop when the wind would blow in the wrong direction. Did it ever rain here? Come to find out it did rain once in a while, but that only made the air smell like dirt, not dust. I longed for home.

 

Whether I wanted to or not, there I was starting the 10th grade a week late. Apparently I walked into school looking like a freak to all those around me (or at least that’s how everyone stared at me). Idaho was a bit behind on the latest trends when it came to fashion, and I was basically wearing a bright neon sign that said “New in town, make fun of me.” And they did…

Hello Goodbye.

25 Aug

We had lived in Wilder, Idaho for four years, my mom would say this was “4 years too long”. But if you asked me then, I’d have said I loved my life there. I had an awesome circle of friends from school and church as well as my maternal grandparents, my aunt, uncle and cousins who lived nearby. I liked Wilder in general when it came to the life I had there, but the church congregation my dad was the Pastor of started to cause our family emotional pain.

For the most part I was ignorant of all that was going on between members of the church and my father. I knew some people weren’t happy with my dad as their church’s pastor, that they all had different ideas of what my parents should be doing concerning a number of things (what they were, I didn’t know), and that a select few thought they should be in charge…and my dad should leave. The ends and outs of all that transpired within that church body are irrelevant to my story, but it did make an impact on me in one way.

At the age of 11 I thought all Christians were truly great people. That somehow this meant they all were constantly living in a way that was pleasing to God. That they all had good hearts, good intentions, and would never hurt another person. What I didn’t realize then was being a Christian didn’t make you invulnerable to human nature. I was very disappointed when I finally understood this. From then on I ignored the word Christian entirely and rarely said I was. I wanted people to judge me based on how I live my life and how I treat others. I didn’t want them to think poorly of God when I fell short of societies understanding of what a Christian is. Whenever someone happened to ask if I followed a religion I would never hesitate in saying that “I try to live my life in a way that makes God happy. Yes, the Christian God you hear of.”. Being a Christian is a way of life. By saying you are a Christian is identifying yourself as one who has a relationship with God and tries hard to follow his word. This doesn’t always mean we succeed, it just means we TRY…

At just the right time God opened a door out of Wilder and my dad lead our family through it to Omak, Washington. He had taken a position as the Sr. Pastor of Church there. I was sad to leave my friends and family but I was really happy for a new beginning.

Omak was great. Everything seemed to fall into place quite quickly. There were several girls my age who I became close friends with (some still in my life to this day). My dad enjoyed his job, enjoyed his colleagues and his congregation. My mom as well fit right in and was welcomed by everyone. My brother who has never known a stranger he entire life had no issue re-making friends. My sister struggled a bit though. I know she was happy to be out of Wilder, but there was something in her that was not content. She’d pursue early graduation to enable herself to go to college within a year or so of us moving there. But we as a family hadn’t been this happy in a while, it felt so good.

Ya know what also felt good? Not being on food-stamps and having real healthcare! I never was one to care that we were poor but not being poor had a wonderful effect on my parents. My parents didn’t have to worry about finances like they had been for many years. They were able to provide for us kids as well as for themselves with more ease than they ever had before. We enjoyed living in a beautiful (but pretty old) house, we took several family vacations, we worn store-bought clothes, ate name-brand cereal and from a kids perspective had THE BEST CHRISTMAS’ EVER!!! But regardless of how happy and secure I felt in Omak, I still had my ever-present pains, weaknesses, and general health struggles to live with.

I started the 6th grade and I gave it all I could to attend, oh how I loved learning (not joking, love learning). Unfortunately as much as I tried, I couldn’t physically do it. Half-way through the school-year it was obvious we needed to approach my education differently. So we turned to a local Christian School that offered home-school curriculum and the use of their teachers for questions and testing. My brother seemed to like the idea of homeschooling also, so he joined me the following year. Needless to say I excelled at the whole “go at your own pace” type approach and finished the 6th grade with ease and early. The following school year I ended up blowing through both 7th and 8th grade (told ya, love learning). My brother on the other hand did the bare minimum required of him to finish in time and got that done.

Around the age of 12 I found a way to manage my hand and enjoy playing it while living in Omak. Nothing happened to my body anymore that wasn’t normal, well normal for me anyhow. I learned how to live within the perimeters of my disorder and the importance of balance (I knew the importance, doesn’t mean I exuded it). I knew what choices were good for my body, and which ones would cause extra pain. Not going to lie, I sometimes chose the extra pain in order to have more fun…but doesn’t everyone once in a while? By the age of 13 I had accepted my life will always have physical pain, weakness, fatigue and occasionally paralysis but that the degree of pain and frequency of paralysis would be completely dependent on my own choices.

A few short weeks after graduating 8th grade we had to leave Omak. I was devastated and so angry… I loved it there. I had the most amazing friends! I was a part of their families and they were a part of mine. Why did we have to leave a place and a life we loved so much, everyone loved it, not just me. Well, to put it simply and honestly, for the same reasons we had to leave the last church in Wilder. People and their desire for power. What was really hurtful about it this time though was it was brought on by people my dad considered friends. People my dad had grown close to, trusted and respected. People that I knew and had become a part of their family. I didn’t have a personal relationship with the church members in Wilder that created the chaos there, but I did with these. What they did hurt me and made me so angry. They had spread lies throughout the church body to the extent that the damage was irreparable. The congregation stood divided, some people even left the church sickened by all that was happening…can’t say I blame them. But we didn’t do anything wrong! My dad was an awesome pastor who loved everyone and always had the church’s best interest at heart. It felt like the innocent were being punished, it wasn’t fair to me. I can only imagine how my parents felt though. They were betrayed by their friends. My dad now had to try to find a new job to provide for his family. How could they do this to us? At least the Church Head Office gave my dad several months severance pay and an apology for having to replace him. It was nice knowing they never held my dad responsible for the breakdown of the church, and that they cared enough for our family to not leave us penniless.

It took me a long time to forgive these people for their actions but unfortunately I have not forgotten. I would advise against any of them approaching me to say hello and inquire about myself or my family…. Remember, Christians aren’t above human nature but we do try…

It felt like it was just the other day I was saying my first hello to my girl friends and now I was saying tearful goodbyes as my dad delivered his last sermon. With our van packed, belongings in storage, we we’re moving again… After a small and much-needed family vacation we set up life in Lake Stevens, Washington. Just in time for the first day of high school…

Poker Face

25 Aug

People in my life have been emailing me after reading my posts and are expressing that they had no idea I was in so much pain (they all knew I had muscle issues but not always the full extent of the impact), or that I faced so many challenges or disappointments so early on. No one has told me this, but I am getting the impression that they are feeling as if they may not know me as well as they thought. Or that they now think our friendship/relationship wasn’t as deep as it should or could have been. Almost like they are just now getting to know the very core of me and why I am the woman they love.

I wanted to take time to validate your feelings and let you know that it is by no fault of own if you did not know the in’s and out’s of all that was “me”. I am completely at fault and so beyond guilty for you not knowing what you are reading of.

Years before Lady Gaga wrote the song, I had mastered the art of the “Poker Face”. From the moment I was dealt my first hand I utilized it fully. The Poker Face was essential to my overall happiness in life for two reasons. One, I was determined to not let my friends and family see my true level of pain, or any other emotion that would make them feel sympathy. Sympathy was not something I wanted from them. I wanted these teammates to be strong and not stricken with worry. Secondly, I needed this face to give me strength to get through whatever challenged me. I used the face as a distraction from the reality of my hand, making myself less able to dwell on whatever I was suffering from physically or mentally. My poker face was mostly made up of non-stop humor and the smiles brought to the faces of the people around me often supplied the driving force behind my perseverance.

When I wore the Poker Face I was able to fool people who knew me and even myself sometimes. After reading emails and talking personally with some friends about my posts, I can’t help but feel I lied my way through my hand and even to some of my key players. Maybe we will call it omission, yeah that sits better with me somehow…

I wish I could say I regret wearing the Poker Face so very often. That I wish I could go back and discard it, to be transparent with those around me but that would be a bigger lie than the Poker Face itself.

I (as a child) wouldn’t have been able to find the strength to persevere  if I could see worry and pain permanently etched on the faces of my players, my soul would have disintegrated.  From the perspective of the woman I am today, I can’t help but think I robbed my players of a chance to challenge themselves. Had I not worn the face so often, maybe others could have risen to the occasion and worn the Poker Face for me… For this I am regretful. I regret not having faith in my players to be strong enough for me to be weak and depriving them of an opportunity to lend me their strength. I wish I would have allowed myself to show weakness and vulnerability more often and to more people.

At 24-years-old I now understand the importance of showing weakness and being vulnerable with the people I love and trust (and even some strangers). I’d be lying if I said I retired the Poker Face completely as sometimes it’s necessary for the greater good of life in general. For the most part though, when faced with a challenge (physical, mental or emotional) I can not easily overcome by myself I do not hesitate to call upon my exquisite teammates for help.

God places people in our lives so we never have to be physically or emotionally alone. Have faith that God has purposefully chosen your teammates, who are all capable of aiding you in whatever hand you are dealt. In fact, God may have placed specific people on your team to give them the chance to show his love, his strength and for their own person growth. Please do not rob them of the blessing they could give you, and in turn, themselves.

Poor and content is rich, and rich enough.

22 Aug

I love Shakespeare for his ability to relate life circumstances through such beautiful verse. Often times he’s stating the obvious, like in the famous verse from Romeo and Juliet. Juliet asks, “What’s in a name? That which we call a rose by any other name would smell as sweet.” It’s so beautifully written but so very plain in meaning. Which is how I want my posts to come across, beautifully written but plain in meaning.

As I stated in previous posts, I grew up poor. My dad had chosen to follow God’s calling and become a Pastor. The clergy do not make much money unless they are apart of those huge, televised congregations… So yeah, the whole family was dealt the “I’m Poor” card because a servant of the Lord doesn’t receive a large salary. We had to stick together in order to get through that deal.

The amazing thing is I never felt poor, I never felt like a poverty stricken child. Even when we were living in a tent in my grandparent’s yard (My mom burned our house down. Hahaha, had to Momma), getting food from the food-bank, receiving hand-me-downs from our financially better-off friends and family, or getting Christmas presents from strangers who picked our name off the tree at a local church. Why didn’t this affect me you ask? Well, because love holds it’s weight in gold. The love freely given by our family and friends, by our church and community but mostly because of the ever-present love in our home, made  me feel so very rich.

Love was so abundant in our home that it created its own force, like the pull of gravity. Our home became the “local hangout” for all our childhood friends. It was the place to be even though we had very little to offer in the form of luxuries, or even food. It was a magnet to children and teens, everyone felt the love inside and that’s all they were coming for.

Twice we were blessed with amazingly timed cash gifts. Still to this day we have no clue who left the wads in our mailbox, but we are eternally grateful to the person or family. If they happen to read this blog, thank you so much for your unconditional giving. I hope you were blessed as immensely as we were by your blind faith.

We as a family have several people to thank for the aid they gave us time after time. For the money, food, gas, shoes, clothes and the occasional awesome hand-me-down video game console (thanks cousins)! All of this giving translated to love. By being surrounded by people who unconditionally loved me and my family, I was able to be poor and content. I indeed felt more rich than anyone I knew.

We may not have had a penny to offer anyone, but our family always had an open heart, an open house, and a willingness to serve those in need however we could. So when things get tough financially and you feel you can not get through it, hold to hope and hold to those who love you. If you allow yourself to focus on love and not possessions, I can guarantee you will feel rich as well. Have faith that God will provide what you need but do not sit idling waiting for provisions to be delivered via FedEx. You must be proactive as well. You must give to those around you in whatever form you have to offer. Whether it be by donating your time, your skills, or simply offering up some unconditional love. God will bless you as you bless others, it’s just how he works.

What’s in a name?

21 Aug

Mr. Bill Shakespeare was on to something here…

I wanted a name to go with the pain I felt every day. I wanted a diagnosis and a prognosis. Just give it to me so I can move on knowing what to expect. Well, months went by and we finally heard from Dr N.B. but it wasn’t what we had expected. My muscle biopsy results came back “Inconclusive”. He explained that this didn’t mean I didn’t have a mitochondrial issue, it meant that what they were searching for with the tests available for this sort of disorder came back with nothing. There were definitely mutations or subtle differences in my tissue than from that of a person without muscular issues…but nothing they understood or could diagnose. Later on down the line of testing Dr. H out of Dallas, Texas said, “I think we’re looking at the wrong part of the elephant.” Yeah, that didn’t help either Dr. H, thanks. So that’s it, they had nothing to tell me. No name to give the culprit robbing me of my childhood.

 

This bothered me for a while, years actually. I really wanted to know what was causing my body to fail me. I often talked to my mom about how much it bothered me not knowing what I had. But I stopped longing for a diagnosis after she said something so profound a few years later.

She asked, “Lace, what would change if you got a diagnosis? If you knew the name to go with your pain, what would change in your every day life?” I stared at her thinking intently, wanting to answer her in some amazingly clever way. But all I could come up with happened to be the correct answer and not even clever, “Nothing”. She replied with a knowing nod and smirk, “You’re right Lace, nothing would change.” After thinking about this for a little while I told my mom “I believe I may have created a brand new disorder. Some sort of weird fusion of genetic disorders… Do you think they would give me credit and name the disease after me? Maybe Lacey-Disorder or LKL-mutation-5000, maybe they’d use my name in conjunction with the scientists’ name that defines the mutation!?!” This is how I dealt with giving up on a diagnosis, humor. Mom and I shared a laugh and she gave me her “eyes” as I nonchalantly crack jokes about an incurable muscle disease being named after moi. I know part of her loved my odd way of spinning dark things into laughs but another part of her was breaking with the reality of where my life was heading.

 

My mom was right though as she always is (I’ll admit it). I never got a diagnosis before my re-deal and I never plan on pursuing one. Nothing will change.

“That which we call a muscle disorder by any other name would suck as much.” -LaceyKH

Sci-Fi Eyes, Don’t Touch My Panties.

19 Aug

*Cut* That was me cutting the red tape put up by Idaho’s Insurance for Poor People. It was no easy task and took several months but we were eventually able to schedule a muscle biopsy (and a bunch of other tests) at Oregon Health and Science University. OHSU’s Mitochondrial Research Department covered all my medical expenses the insurance refused, which was such a blessing. There is no way we could have afforded even a fraction of the cost. As it was we broke the bank paying for our hotel and food.

The team was obviously excited to meet me. Hmm, meet me or poke at me? I think both. I was a rubix cube to every doctor and researcher on the Mito Team.  They couldn’t wait to start tinkering with me and in an odd way it made me feel special.

First on the agenda was fasting blood work. This was routine for me now but I wasn’t quite prepared for how much they were going to take, at least 20 vials and I’m not exaggerating. I had never felt so drained in my life. I imagine this is what it would feel like if a vampire feasted me. Before they let me stand I had to down 2 cups are orange juice. Let me stand, ya, like I could have. So I sat there, drinking my juice and trying to stay conscious (exaggerating now) when I’m told of my next test.

“You will be having an Electroretinography (ERG) Eye Test checking for Retinitis Pigmentosa . The doctors will explain more in detail but it’s very easy. Just a couple of electrodes attached around your face and in your eyes. But don’t worry hun, they’ll numb your eyes first.”  Wait, put what where!? She did not just say someone is going to put an electrode in my eye?!? In both my eyes! I didn’t like this. No one is sticking anything in my eyes! It sounded like something out of a Sci-Fi movie. My mom could see my apprehension and reassured me everything would be OK. Besides, Aunt P had it done before and she said it didn’t hurt. I tried very hard to not let myself be overrun with fear. I didn’t want my mom to worry for me after all…

With the procedure explained I calmed down inside. Everyone was so nice, it was hard not to trust them. The ERG was not pleasant. It took them a long time to get the electrode contact in my eyes, even with the use of a speculum propping them open. The longer they took though, the more mouthy I got. I’m pretty sure I warped into Evil Lacey after the 3rd try of placing the electrode. Once the freaky lenses were in place I definitely looked like something out of a Sci-fi movie. They had me put my head into a dome that flashed images at me for about 1 1/2 hours. Then, they turned off the lights and I had to do it for another 20 minutes or so. I was miserable. I had a migraine within the first 10 mins of the test. I couldn’t get comfortable, I couldn’t blink and the drops they kept putting in stung. I just wanted this over. When the test finished I was completely wiped. The migraine lasted for several days and my eyes felt so abused. I just wanted to go back to the hotel…

The next morning I was in a better mood.

Surgery day! I was a little nervous but mostly excited. Although my migraine was still terrible from the alien torture device, I was really looking forward to this. I know, I’m a little twisted. From a young age my parents knew I was. I enjoy watching operations, I always found shots to be fun and would request them at appointments and I like watching the needle as it enters my vein for IV’s or to take blood. I’m just fascinated!

A nurse, a Doctor, and an Anesthesiologist walk into surgery prep room. No really they did…to discuss the ends and out of the procedure with me. It all seemed easy enough and after my IV I was ready to get the show on the road. One catch though. “Lacey you will need to take off your panties.” My face went pale and I began to panic. “Take off my panties? Why? You will be biopsying my thigh…?” Dr says, “Well, yes but it’s not sanitary. We can’t allow you to wear them for the procedure.” Very frantically with a quiver in my voice I say, “But these are brand new underwear! My mom just bought them from Wal-Mart! She washed them and this is my first day wearing them!” My heart was racing, tears were coming down and I was totally convinced someone would violate me in the O.R. I didn’t want strangers, especially grown men, seeing my girl stuff! I think it was obvious to everyone in the room that my underwear were staying on. My very kindhearted doctor got down to my level and said “I have an idea. How about you wear them into the O.R. and one of the female nurses can discreetly removed them before surgery, and I’ll have her replace them right after we stitch you up?” I agreed and was at ease when I walked on down to surgery.

Being put under was risky business if I had Mitochondrial Myopathy. Of course I didn’t know this then, so I wasn’t worried in the slightest. People with the disorder usually have an increased sensitivity to anesthesia. Usually it means we don’t come out of the anesthesia very gracefully although there have been cases where they don’t come out of it at all. But death is very unlikely with the technology we have nowadays to closely monitor patients.

Let’s just say I don’t come out of it gracefully. I am mean, rude, impatient, and normally I can’t stop vomiting. Those are just the standard with me. Twice I had surgery to remove a ganglion tumor from my finger and both times I was given too much anesthesia for my weight (25 and 50 pounds too much)! I was terrible. My mom says I was not her little girl when I came out, I was someone else’ or possessed. I told off a nurse for bringing me a singing bear… Poor nurse. She didn’t look me in the face again after I told her through my clenched teeth to “Get this stupid singing bear out of my room. Do I look like I’m 5 (I was 8, and I did)? What an idiot!” Hmm, not my most shining moment. Anyways, I may not have come out of the surgery gracefully, but I came out of it and I didn’t make anyone cry this time!

We left the hospital that day and the waiting began. I prayed so hard for a diagnosis. I wanted a name to go with what I was experiencing. I didn’t know it then but what I really wanted was validation. I wanted to say “I have blank and that’s why I am in this wheelchair” or “I have blank, see L, I’m not lying”. My sister always told me she knew I was making up the pain for attention. I wanted so badly to prove to her that I wasn’t, to have her sympathy and not her hate.  And that twisted part of me, well, it wanted to know what the end would look like.

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”.

No choice, All in.

17 Aug

I really didn’t have a choice at 8 years old. This is my life, the only one I have, and I’m gonna live it. At the time I didn’t really know what all that would entail. I knew I’d always felt weak, I knew my body had issues and that I was different from other kids. But where do I go from here? How am I going to live now, with this, like this?

I awake in bed around 6am to my alarm. I sat up groggy and sleepy-eyed, and swung my legs around the side of the bed… No, wait, they didn’t move. What the…? (Little fact: I wasn’t allowed to say “what the anything” but I sure thought it a lot!) I’m telling my legs to move, maybe they are still asleep. I rubbed them down a little, I can feel them. My brain is shouting for them to move. Why aren’t they moving?

“Momma! Daddy! Something is wrong, I can’t move my legs! L (my older sister currently age 12), go tell mom and dad I cant get out of bed!” Like I said, I really don’t remember crying. I wasn’t in pain, I just couldn’t move. A part of me was worried and scared because this had never happened but, I wasn’t actually surprised. I knew about disabilities, I was a very bright kid. The fact that I’d been so weak ever since I could remember coupled with the pain and muscle protein loss of recent, it almost seemed logical. I was more concerned about missing my test at school than being unable to move my legs.

My parents took me in to see Dr. B that morning. I really loved Dr. B. He was a doctor who genuinely cared for his patients no matter the insurance coverage they carried. I never felt like a “low-income child” when he tended to my needs. He did everything in his power to give me proper care, even if it was more paperwork or having to make extra phone calls. I remember how he looked at me when my dad wheeled me in. And come to think of it, it’s how my parents were looking at me too.  I’m honestly just now remember their faces. Strange how they didn’t translate when I was 8 but now, now I see it and I can’t help but feel a strong emotion. All of their faces read concern, deep concern. They were looking at a beautiful little girl, with a very bright mind and the sharpest wit who very well could be robbed of all her hopes, dreams and aspirations. Their hearts were breaking for me, the worry etched too clearly on their faces and in how they held their bodies and I was completely oblivious.

I’m so grateful I didn’t see their worry. Had I known what was facing me, had seen their worry, or known that I had a cause to be worried, I don’t know that I would have exercised as much strength as I did. I know this is silly, but I didn’t want to worry them. Hahaha, I was being strong FOR THEM. Lol. I’m sorry I am literally laughing  as I type this out. Really though, it’s amazing what children are capable of doing for another person. How they can be strong, how they can persevere and hold to hope blindly.

That day Dr. B recommended I see Dr. N.B. He was the doctor who diagnosed my Aunt P. with Mitochondrial Myopathy, and he might be helpful to us now that I was exhibiting so many symptoms. I’m sure this was no easy feat scoring an appointment with THE BEST DOCTOR IN THE WORLD for Mitochondrial Disorders (No really, google Dr. Neil Buist he’s a rock star). But I had 3 things working for me, 1) Dr. B would do anything for me to get the appointment 2) Dr. N.B. was very much intrigued by an 8-year-old with a possible Mito and last but definitely the most powerful 3) God.

We went home, it had been around 4 hours since I woke with paralyzed legs. And then I felt it. A strange sensation in my toes. Not really a tingling, more of an awareness. Life, I could feel life coming into them. I began focusing like a ninja to wiggle them. Got it! A wiggle! They were coming back it seemed. This made us all happy. Of course, there was still an issue to be addressed but we had the hope of seeing Dr. N.B. soon and now, they are returning! The feeling began to move from my toes up to my knees and then from there up through my legs and into my hips. But as the ability to move returned, pain replaced the paralysis. The most excruciating pain I had ever felt in my entire life. I really don’t know how to explain this pain to you. In my 24 years of life I have never felt anything like it. If someone offered to cut my legs off, I may have taken them up on it. The pain lasted for hours. My parents gave me as much Vicodin as I as they could but it didn’t cut it. I cried now.

This is when I wondered if I could play this hand. Is this pain going to last forever? Are my legs going to do this often? Can I live with this pain and still feel happiness? Why me God?  This is when I realized more would be expected from me in my life than I ever thought.