Tag Archives: Hope

Seek out little pleasures, to obtain happiness you must.

5 Jul

Today is the first day without my bug. It started rather early when T’s alarm sounded for him to wake. I had every intention of falling right back asleep and taking full advantage of the morning silence.

I couldn’t.

I tried and tried. Tossed and turned, fluffed my pillows, sprawled out in the center of the bed….

Sleep did not come to me. All that came to me was a frown and the urge to climb into my little boy’s bed.

I fought this urge for a while, but the longing to smell the scent of my little guy was far too strong to resist. I made my way to his bed.

I laid there. Then, out of nowhere, I felt warm wet liquid on the sides of my face, my nose started running. What? No Lacey. Stop.

Yeah, I wept. I didn’t cry. I wept. These were tears of sorrow. Everything inside me wanted my little boy home in his bed.

Seriously, what is my problem? This is supposed to be a relaxing, month-long break from motherhood. I am supposed to be drinking a mimosa with breakfast, basking in the hot summer sunlight, reading books and foremost, SLEEPING. I miss sleeping so much. And yet, here I am. In my son’s bed, weeping on his pillow and longing to touch his cute flushed cheeks as he sleeps.

Oh how precious he looks when he sleeps…. My heart is cracking.

 

I finally got a grip on myself and decided to find a distraction. I put on some obnoxiously loud music and started cleaning. It was 7:55am and I was cleaning. SERIOUSLY LACE! YOU ARE PATHETIC.

I cleaned furiously. I sang loudly. I cried intermittently. I brewed a pot of Starbucks French Roast.

I went around scrubbing this, sweeping up that, putting away dishes, throwing laundry around all the while a perma-scowl invaded my should-be peaceful face. Boo. This month is gonna suck balls. Why did I think this month was going to be the best month of the year? I was utterly mistaken.

But as I pouted, the smell of my favorite Starbucks roast took over the house as I cleaned. I started taking deep breaths, drinking in the aroma. Mmm…time for a coffee break I thought. I took my coffee to the living room and started sipping. I continued to smell the beautiful dark roast glory, tasting the righteous nectar of the Caffeine Gods with each long and leisurely drink.

 

Wait a minute. This coffee is still hot and I’ve almost finished the cup. I smiled. I put my cup down on THE SEAT CUSHION of the couch. I got up to check the quiche in the oven. I came back, the cup hadn’t spilled. I picked it up, drank it. The last sip was still hot and filled with victory!

 

I miss my son and my heart is cracked. But my scowl is gone and I am on my third (uninterrupted) cup of Starbucks.

 

So it might be small but I have found something worth enjoying out of this whole separation.

 

DELICIOUS HOT COFFEE!

 

I’m hoping to find more little pleasures to enjoy in order to mask the sorrow of the biggest thing I enjoy being absent.

 

***I hope all my American friends enjoyed their Day of Independence yesterday. Mine was a mixed bag of balls, but the fireworks at Niagara Falls were breathtaking.***

 

My Concussion Still Sucks Metaphorical Balls.

15 Jun

Ever since my concussion (read all about it HERE and HERE) I have felt emotionally unstable. Because of the Post Concussion Syndrome, I have frequent headaches and experience anxiety in social situations (even when I’m with my close friends and family), loud noises or chaotic environments trigger attacks, small things I used to not fret over worry me and make my heart palpitate, and in addition to the anxiety the concussion caused depression as well.

From the usual content of my writing this may come as a shock to you. I keep my posts humourous and upbeat no matter how I might be feeling on that particular day. I find that when I force myself to write, even when I am mentally in a dark hole, it helps turn my day around. I work really hard to search out a happy place and when I find it, I start to write and share what I found with the world.

I enjoy writing. I enjoy laughing. And I especially enjoy other people’s laughter. But this past week has been torture. I don’t know why it’s been worse than usual. My body is even feeling it. My legs are fatiguing and last night I felt pain in them that I hadn’t felt in months, my joints are aching, I even find myself frowning and scowling for no particular reason.  It hard to find pleasure in anything. I can’t seem to look forward to fun things we’ve planned for this weekend, and that just makes me mad.

What really gets me going though? I know all these feelings are irrational. I have no reason to be sad, disappointed, agitated, depressed, angry, or anxious. I feel hyper aware that my mental state does not fit my situation in life and that makes me even more agitated and frustrated.

My life has improved in so many ways over the last few months. My hubby graduated college a few months ago and he has a great job in a very cool field, We have money now (such a relief of stress), I’ve been able to visit home a few times in Seattle, I got to see my brother get married, My son is growing more awesome with each passing day, I’ve lost 3 lbs, I have a couple of friends in Canadaland now, And my application for permanent residency is currently under evaluation and should be approved by the end of the year. Seriously, I should be happy. I should be loving life, enjoying the beautiful summer with my son and husband. But I’m struggling, and that frustrates me.

I’ve been to a few doctors about these issues and each time they say there is nothing they can do for me because the problems are caused by my post concussion syndrome, not a chemical imbalance or an inability to cope with a crisis. They say this could last from a few months, to several years, or the rest of my life. I wish I could take a pill for a while, or get some counseling and be better. But those remedies won’t help me. I feel like there they are telling me there is no hope but time, and I don’t want to accept that.

I want myself back. I don’t want to have to dig myself out of this stupid dark hole anymore, I want to always be in the beautiful light of life. I don’t want “good days and bad days”. I want to be the Lacey I was before the concussion. The rational, emotionally stable, spontaneous, upbeat, positive, excited about life, always looking on the bright side, Lacey. I hate that I have to force a smile on my face, I feel so fake doing it. But the anxiety and depression are the true disingenuous a-holes. They are both LIARS and exist in a false reality.

I know that my anxiety and depression are affecting my son and husband, and that breaks my heart. This past week has been especially hard for everyone I think. I try to make up for all my neurotic behaviour when I have a good day, but I haven’t had one of those in over a week and it’s not for my lack of trying. And it just adds to how horrible I feel when my husband is all sweet, caring, loving, understanding… I feel worse when he is so good about it all. How’s that for crazy?

I don’t know where I was going with this post, or if I had a point I was going to make. Honestly, no clue… I do however know that a lot of people suffer from anxiety and depression. And if you’re reading this and can relate to what I am going through, I hope you feel less alone.

Until these concussion related problems dissipate, I’m going to keep fighting against it. I’ll keep climbing out of the dark hole, I’ll keep trying to smile. I still have my will to fight and it will not defeat me. Anxiety and Depression will have their place for a while it seems, but I refuse to let them define me. I refuse to give up hope for an end to all this inner madness.

And so today I do battle in my head. I hope if you’re feeling DOWN, that you’ll fight for the UP with me! And if you’re already UP, how about you grab the hand of someone who is DOWN, and drag them UP to you. Or throw a couple Xanax or Valium at them. Be friend will ya?

P.S. A friend of mine linked me this video, HAPPY!, and it brought me a genuine smile. It was just what I needed to find true happiness today, and a grip on reality. I looked at my son and remembered his first words and how his laugh used to sound when he was a baby. Thanks C!

P.P.S. When I went to do the tags after finishing this post, one of them was “Lady Gaga”. I thought about why she was suggested. It has to be because of my mention of pills and living in an alternate reality. I tagged her because WordPress would never lead me astray….

Help me, Help her.

25 May

I’ve been feeling a sense of urgency to write but honestly I have absolutely no idea as to how I should approach this cry for help. Every time I sit down to write I feel overwhelmed with emotions. So many memories race through my mind and all sorts of ways to reach out to you come into my head. I’ve been getting so wrapped up in the words I should use that I’ve actually delayed this post. And this post needs to get out there, like a week ago. I’ve decided to stop thinking and to start typing. This may not be my prettiest or my most cleverly worded post but it is the most heartfelt and sincere.

Here is a little back story before I get to the point of this whole post.

I attended MDA (Muscular Dystrophy Association) Camp through my teen years and had the opportunity to form amazing friendships which are actually more like a family unit. To break it down further, we’re pretty much an underground organization of super heroes, but I am bound by oath to not elaborate. These friends were (and are) a source of community as I struggled through all the crap MD brought me as a child, teen and young adult. They understood my pain, suffering, loss, and every day challenges. They understand the frailty of life, they appreciate each day as if it was their last. Because it could in fact, be their last. They are MY people. And I love them.

Joining this elite group of kids exposed me to many opportunities for growth. We taught each other how to live with pride and how to find happiness in the hand we were dealt. We built each other up throughout the year and looked forward to that one week out of the summer where we came together and didn’t feel handicapped. It was all about us, and having fun. Camp holds a very special place in my heart, as do all the people who attended or volunteered that week.

With all the reward that came with knowing other MD kids it wasn’t apparent to me that this group had a down side. Most MD diagnosis’s come with a life expectancy. At age 15 I was given the number 21. I never put it together that some of my friends, these close friends whom I loved and admired, also had a number placed on them. I was 18 and being healed from the pains of MD when I experienced the heartache and grief that comes with losing a friend. I also felt an extreme amount of guilt. Why was God healing me and not my friends? I felt so guilty that I was pain-free throughout my body, while my friends were getting worse.

The first friend I lost to this disease was a best friend, 7 years ago. Her name is Cassandra and we definitely were a dynamite team. Her wit matched mine, her passion for life was like nothing I had witnessed before and seriously, nothing phased her. She knew her limits and plowed through them whenever possible, she loved adventure just like me. Her and I connected from the day we met, which was my first day ever at MDA Camp. We were bunk mates through the years and inseparable at camp. We continued our friendship through telephone calls, sleepovers and fundraisers. We were a team to be reckoned with! OK, we actually were just sarcastic trouble makers who enjoyed eating all the free pizza…. but we did raise SOME money. I lost Cassandra in 2005 and not many days pass where I don’t think about her. Where I don’t wish that there was a cure for what she had or that God would have healed her too, that I don’t wish I could have made it to her funeral, that I don’t wish I would have returned her phone call sooner. I was two days too late and kept getting her voice mail for a few weeks. It wasn’t unlike her to not check her voice mail, so I didn’t think twice about it. A close friend had to tell me over the phone of her passing. I couldn’t move, I couldn’t breathe. I feel the same sorrow now as I type this. I miss her. I miss her so much.

Soon after I lost Cassandra, I lost another close friend, affectionately nicknamed “Homie”. Homie and I met on my first day of camp as well. He was a “wanna be thug”, as I always told him. He’d wear his bandana and listen to (far too loud) rap music like he knew what was up. But in reality he was the softest, sweetest, most loveable guy I had ever met. We’d hang out when he was in town and I spent the weekend at his house with his family a time or two. I miss him.

Three years ago I lost another close friend, Matt. He was a jokester. He was fun and slightly mischievous. He also loved, no, was obsessed with trucks and race cars. He asked me to my first “Big Boy Dinner” at camp. Every girl wanted to be on the arm of one of the Big Boys (they were the oldest boys at camp, the dinner was always fun and delicious, and we got to dress up!), it was a pretty big deal for us. Whenever I hear the song “Free Fallin” I think of our first dance together, and every dance after then to the same song. Our song. I miss him.

I shared these very personal experiences of loss with you so you can better understand why I am so passionate about the following person. This post isn’t intended to be about loss, it’s about saving a life.

The life of a friend of mine, the life of Susie.

Susie and I met at camp. Since she is 4 years younger than me and in a different cabin, we didn’t have tons of opportunities to hang out. But when we became cabin mates during my final year at camp, I was blessed with the chance to get to know her better. The thing about Susie that stood out to me was her heart. She is kind, compassionate, loving, tender, caring, sympathetic, and sweet. Susie’s heart is what makes her so special!

Last week Susie informed me and all of our friends that she needs a new heart. But in order to get on the transplant list she needs to come up with a huge sum of money to prove she is a worthy candidate. This down payment so to speak will show that she can afford all the costs that come along with receiving a donor heart. For example; relocating closer to the hospital, follow-up treatments, and medications. Currently she has a pacemaker/defibrillator that is keeping her heart from stopping, but this isn’t good enough for the long-term. She needs a new heart to save her life.

I refuse to do nothing when I can do something. I couldn’t save Cassandra, or Homie or Matt. And I know I can’t save Susie all by myself, I need you. I need the readers of my blog. I need the fellow bloggers who enjoy my ramblings and interact with me on a weekly basis. I need the world-wide-web and the people living in it to use all their Social Media Super Powers to get her story out there! I know we can do this together.

Susie’s page can be found here (updated): http://www.giveforward.com/susieslvad  (This is her most recent site, to help her with the expenses surrounding her LVAD while she await a transplant.)

I’m not going to beg for money, although I’m not above that in the least. Today all I am asking of you is that you please post the link above to your Facebook page and encourage others to do that same. Or Send it in a mass email to your friends/family/coworkers urging them to read it and forward it on to their friends/family/coworkers. Or Twitter it (Tweet it? Idk, I don’t do Twitter)…please get the word out there as best you can. If you feel moved to donate, then do so. I thank you from the bottom, top and all sides of my heart for whatever action you are able to take.

This world needs people like Susie, and I need Susie in this world. I nearly fall to pieces thinking about mourning the loss of another friend. Please. Help me, help her. Let’s get Susie on the transplant list!

Thank you.

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Recovery

16 Apr

Since September it’s been constant stages of recovery for me. My health was in a bad place and as my readers know, I was thrown a new hand from a player. Lucky for me there were a lot of things going in my favour.

I have players who never cease to amaze me. They are full of insight, strength and encouragement. I’m also wicked smart and intuitive, which helps me all the time in life situations. I also have never been so happy to be an American.

The new cards shook my whole life. I hate to be so vague about it all but it’s not the time and especially not the place. The big WWW just isn’t appropriate as a sharing platform. At least not this early in the game. All I can say is it got hairy and was touch and go for a while. And not in the good “touch and go” way…  There wasn’t a lot of self-help books for me, which I found very disappointing. And everything I did read kinda seemed like a “Duh.” in my mind. The advice they were giving in the books were so OBVIOUS, I could have written the book before this experience. That all being said, I guess God gave me something I could handle even though it felt like a ginormous kick to the metaphorical balls. I had this inner peace from the beginning even though my whole being felt pain. I knew what way to go, what to say, how to act…. I just knew it all. And for that I am grateful. These cards will most likely, in some way, be in my life forever. But I am confident that their impact, although initially devastating, will eventually turn into the single greatest growing experience my life will ever endure. Or I should hope…

I’ve always been proud to be an American. I might have some issues with our political system and its MAJOR malfunctions… I’ll stop there. This blog WILL NOT turn political. Obama 2012!!! …. (I tried not to write that, really I did. I wrote that during the editing of this post. What is my problem!?!?! See, always room for growth.)

As people know I have health issues. I struggle with my health all the time. Weird stuff usually, that has no rhyme or reason. Something is always going on with my body that’s not even related to my past MD problems. That all being said, the most recent odd thing was bursitis in my right shoulder as well as a concussion, given to me by my ever-dancing son. The pain from my shoulder became unmanageable and the concussion left me with social anxieties and constant headaches. My son and I flew to Seattle in February, back to home to my parentals, to get the care I couldn’t receive in Canada.  GOD BLESS THE USA and their flawed but wonderful healthcare system!!! After 2 1/2 months I am pain-free in my shoulder and it’s running at about 80% function. And although there was no hands-on help to be had with my concussion related issues (the anxiety could last forever they say), I did get a nifty medication that nipped the headaches in the bud as well as a medicine that aids my natural ability to sleep. Things are looking up for me in the health department. Every issue is under good management now, and with the new incorporation of clean eating/vegan lifestyle I am sure my arthritis flare ups will decrease and my energy level with increase. Cheers to good health!!!

So you’re up to speed on my Present Gameplay. I’m back in Canada, I’m working daily on myself physically, mentally and spiritually. Ever searching for that perfect balance to bring true happiness and completeness. Life, despite its many challenges has only strengthened me.

As you know (if you don’t, now you will) “Pain is just weakness leaving your body”. Some day, I’m going be epic strong. Like the Hulk, only zen-like without the green exterior, or male, or huge. Just small, and strong, and peaceful. OK, so maybe nothing like the Hulk. Dang it. I’ll be epic though, in my own Lacey way.

QUESTION PERIOD:
Have you ever had an experience that was horrible, challenging, scary or heartbreaking, but you came out of it like a superhero? And felt all epic-like afterward? Tell me about it, and be as detailed or as vague as you wish!

If you knew the can was full of worms

21 Aug

would you still open it?

See I’m one of those people who opens the can knowing there are worms inside. In fact, I’ll use any means necessary to get the can open, heck I may even smash the can open with a hammer or use a crude tool to cut a hole for the worms to be shook out… I get the job done people. And if you ask nicely, I’ll help you open your can as well. Because I’m always here to help.

The other night when I wrote the draft of “Anger is the folly of fools” it really irked me that I was struggling with posting about my “Re-Deal”. My re-deal is amazing. When comparing my life 10 years ago to the life I live now there is NO comparison. I am pain-free, I have a wicked awesome son, a husband who is truly superb in every sense of the word…why am I not excited to share this miraculous gift I have been given? Why is it so easy to share the pain I endured and not my present joys? Really, I was so determined to figure this out that it led to a horrible nights sleep and me waking up with a crick in my neck.

I started thinking of everything I had 10 years ago and everything I have now. I was so out of it come 1am that my thoughts started morphing into dreams. Ya know those weird ones where you know you are sleeping but you are still conscious enough to manipulate your dream? Yeah, those aren’t conducive to actual rest. By the time I woke I felt like I had been thinking all night, not sleeping. It was horrible. So what did I do? I continued to think about it of course. Then I thought, maybe if I finish the draft I’ll have some sort of realization of what my issue is. Well I got the realization.

What I discovered isn’t that I don’t love my re-deal but that this pain-free existence has brought me very far away (geographicly) from the people who supported and loved me through my first hand. If I was still sick my world would have remained rather small (that’s if I were still alive), and in that miniscule bubble of a life I would have had physical pain but I would have been physically closer to the ones I love so dearly. So, I seem to have made an exchange. I switched out physical pain for emotional pain. My heart literally breaks that I can not see my parents daily. Sure I video-skype them often, sometimes several times a day, but it’s not enough for me. Call it child-like dependency or whatever you may, but this woman needs her parents in a way that might be unnatural. I want them to come over for dinner, spend the day at the beach or zoo with Beau and I, Go to Starbucks and be a coffee snob with my mom, Hit up a comedy club with my Daddy, hug them and feel their warmth, lick my Dad’s forehead when he thinks I’m going to kiss it… I miss them. I need them. In fact, I need them and so many others too. My brother, my sister, my extended family and special friends… I’m so grateful I had them all in my life when the only reason I wanted to live was to spend time with them. I guess I should be grateful I had them around when I needed them most, but why can’t life be picture-perfect and I have them now as well?

Whoever said “You can’t have your cake and eat it too” well, you just shut up! You jerk! Who would ever buy or make a cake just to stare at it? Pft, Idiot. Don’t you know I’m a “Cake-Eater”?!?!  But for some dumb reason this irritating saying applies directly to what I am going through. My heart is torn between the people I always had present during my first hand, and being with the ones I currently have in my re-deal.

I feel bad for not being content with the life I am living. I’m grateful for my son and husband, so very grateful. But my heart breaks daily as I long for the company of my family and friends. What I wouldn’t give to hug my brother at this very moment!?! He’s going through a lot of life challenges and I just want to hold his hand and help him like he’s helped me so many times before. Or to be with my sister as she’s about to venture into a life-changing experience. I want so badly to hold her hand as she embarks on her journey, to give her encouragement and reassurance IN PERSON and not through Skype or Facebook. But I can’t. I can’t leave Canada with a guarantee that I would be let back in. I can’t risk being kept away from the love of my life to be with the other loves in my life.

T always tells me when I am feeling blue for my family and friends (which is quite often) that someday I can have it all. That by this time next year it will be so much better for him, me and B. I want to believe him with all my heart but only part of it believes. In the grand scheme of things being away from all of them for a few years is just a blip in time in comparison to the lifespan I can now expect to enjoy. But it still hurts…this little blip in time.

No matter how much I sift through this can of worms it doesn’t change the reality. I’m lonely. I often feel an overwhelming sense of despair and mildly-moderate depression that robs me of enjoying my re-deal. Of enjoying my health and the loves that are with me every day. It’s unfair to T and B that I’m dwelling on what I have lost instead of what I gained. God didn’t bless me with a re-deal to have me moping about and not playing the game, that’s not a good way to honour a miracle. And it’s definitely not a good way to show T and B how much I love having them in my life.

Things have to change inside me. So, I’m going to take this can of worms and go fishing in hopes that it will get me out of the Pity-Party (Did someone say Party?…that makes me think of cake. You jerkface! Not you, sorry. I was referring to the woman who thought up that darn saying! And you know it had to be a woman. Only a woman would come up with a reason not to eat cake! Probably some skinny little…Ummm…I’ve derailed. Back to the train-of-thought.) and back to celebrating my life in a way that would make my family, friends and God proud!

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”.