This post is kind of a combination post of both the ending of Invisible Illness Awareness Week--who's theme this year was Just One--and the beginning of Mitochondrial Disease Awareness Week.
You would think someone with as many chronic illnesses as I have and how long I have been dealing with them for that nothing could phase me anymore medically. I thought I was handling and pretty well adjusted considering the laundry list of illnesses, going to school, and working several jobs at a time (before everything went really downhill at around age 27),
But on December 30th, 2013 my whole life changed with one diagnosis, one lab report handed to me,,one appointment of being told what was possibly to come problems (on top of already intense medical problems), one sentence with the answer I've been looking for. Finally, just one diagnosis that explained why I had so many diagnoses at such a young age. Just one word: Mito.
That is the day I was diagnosed with mitochondrial disease. I found out I have deficiencies in complex I, III, and IV along with a problem where my cells can't convert carbon dioxide to oxygen, and I had red ragged fibers which meant I also had some type of unidentified neuromuscular disease. The thing about mitochondrial disease is--as it's name implies--affects the mitochondria of the cell, and cells are everywhere in your body, and if the cells aren't producing enough energy to operate or are dying than that part of your body will die too. We already knew that my GI system was pretty much completely shut down--as I was on tube feeds already--, I had neurological problems, cardiology problems, sensory issues, etc. After talking to the doctor we knew that it was going to be progressive. and we knew that it is terminal. In the course of one doctor's appointment, one hour, and one explanation I went from walking into the appointment with a not terminal illness and walked out with one. It just takes one thing to change your life. Mitochondrial disease has definitely changed mine.
It's amazing when you have 16 chronic illnesses already, that one could make such a big difference and impact on your life. Mitochondrial disease affects so many people and in so many different ways. Since being diagnosed my respiratory system, muscuoskeletal system, and immune system have become involved and the others that were already involved have progressed more. Mito is a progressive disease for basically everybody, and terminal for almost everybody too. It just depends on how long you stay controlled before you start to pass away. Mito takes the lives of children (more than childhood cancer each year), teens, young adults, and older than young adult adults. Today, one of my friends passed away at the age of 27--stupid mito. Mito also affects so many organ systems and what not you often have too many symptoms to list or even be able to think about. I take so many meds (and so many times a day) I can't even remember them all and have alarms set on my phone. I am pretty much permanently wheelchair bound when I'm out for long periods of time, and I'm tube fed through a tube in my small intestine 24/7. And I have countless specialists, therapists, treatments, infusions, counseling, etc. to be able to deal with all of my issues that mito causes.
I am so, so happy that I FINALLY know what is wrong with me and that I have a diagnosis and a kick butt doctor that is such a good specialist in mito that takes such good care of me. I'm glad we finally know the truth. But sometimes I think this truth just plain sucks. Incurable, progressive, terminal disease. Takes the lives of children and other ages frequently. Has symptoms that impact sufferers on such a high level that they can barely function. A need to take so many medications and supplements just to be semi-functional part of the time. A disease where you join so many support groups and get to know these people intimately and talk to them daily and then mito takes them far too soon, and their earthly journey is over, and your friend is gone. Yeah, sometimes knowing I have mito pisses me off. Because I know what's coming and I know what's been and it's just not fair.
During this week think about some of the stuff I mentioned about mitochondrial disease. Visit the /United Mitochondrial Disease Foundation website or Mito Action's website to learn more about mito as well. There are so many people affected by mito, and it's a nasty disease. Once you know you have it picks you up, turns you upside down, and shakes you all around trying to see if you can handle it. All of us with mito though (and my other chronic and invisible illness friends) are warriors. We fight the battle hard. We do not let the disease win, ever, even if we are losing our earthly battle. We always come up on top. Everyone knows us mito warriors are strong and courageous. But all of us also know it just took one word to change our lives forever. The word mito changed my life forever. I'm trying really, really hard to cope with the negative changes and throw some positive in there and help others with mito know that they can make a difference, they can accomplish their dreams. Yes mito changed my life forever, but that's not necessarily a bad thing. Because the other one word that I rely on the most in my life is hope. And we always win when we have hope!
You would think someone with as many chronic illnesses as I have and how long I have been dealing with them for that nothing could phase me anymore medically. I thought I was handling and pretty well adjusted considering the laundry list of illnesses, going to school, and working several jobs at a time (before everything went really downhill at around age 27),
But on December 30th, 2013 my whole life changed with one diagnosis, one lab report handed to me,,one appointment of being told what was possibly to come problems (on top of already intense medical problems), one sentence with the answer I've been looking for. Finally, just one diagnosis that explained why I had so many diagnoses at such a young age. Just one word: Mito.
That is the day I was diagnosed with mitochondrial disease. I found out I have deficiencies in complex I, III, and IV along with a problem where my cells can't convert carbon dioxide to oxygen, and I had red ragged fibers which meant I also had some type of unidentified neuromuscular disease. The thing about mitochondrial disease is--as it's name implies--affects the mitochondria of the cell, and cells are everywhere in your body, and if the cells aren't producing enough energy to operate or are dying than that part of your body will die too. We already knew that my GI system was pretty much completely shut down--as I was on tube feeds already--, I had neurological problems, cardiology problems, sensory issues, etc. After talking to the doctor we knew that it was going to be progressive. and we knew that it is terminal. In the course of one doctor's appointment, one hour, and one explanation I went from walking into the appointment with a not terminal illness and walked out with one. It just takes one thing to change your life. Mitochondrial disease has definitely changed mine.
It's amazing when you have 16 chronic illnesses already, that one could make such a big difference and impact on your life. Mitochondrial disease affects so many people and in so many different ways. Since being diagnosed my respiratory system, muscuoskeletal system, and immune system have become involved and the others that were already involved have progressed more. Mito is a progressive disease for basically everybody, and terminal for almost everybody too. It just depends on how long you stay controlled before you start to pass away. Mito takes the lives of children (more than childhood cancer each year), teens, young adults, and older than young adult adults. Today, one of my friends passed away at the age of 27--stupid mito. Mito also affects so many organ systems and what not you often have too many symptoms to list or even be able to think about. I take so many meds (and so many times a day) I can't even remember them all and have alarms set on my phone. I am pretty much permanently wheelchair bound when I'm out for long periods of time, and I'm tube fed through a tube in my small intestine 24/7. And I have countless specialists, therapists, treatments, infusions, counseling, etc. to be able to deal with all of my issues that mito causes.
I am so, so happy that I FINALLY know what is wrong with me and that I have a diagnosis and a kick butt doctor that is such a good specialist in mito that takes such good care of me. I'm glad we finally know the truth. But sometimes I think this truth just plain sucks. Incurable, progressive, terminal disease. Takes the lives of children and other ages frequently. Has symptoms that impact sufferers on such a high level that they can barely function. A need to take so many medications and supplements just to be semi-functional part of the time. A disease where you join so many support groups and get to know these people intimately and talk to them daily and then mito takes them far too soon, and their earthly journey is over, and your friend is gone. Yeah, sometimes knowing I have mito pisses me off. Because I know what's coming and I know what's been and it's just not fair.
Another thing about mito that you have to get used too (or even really any of the chronic illnesses I have) is that once you are chronically ill, your life doesn't turn out like you planned it...at all. Heck your next 2 hours may not be able to be planned and carried through. When you are a type A personality like me, this is the hardest part of chronic illness. The not being able to follow through with things. The possibility of disappointing people because your illness takes over. You never know if you are going to be able to achieve your dreams, to get that degree you want, or score that dream job if you do get the degree. You don't know if a guy will ever want to date you again because you are in a wheelchair and have a feeding tube now. You don't know what kind of health complications you may have. But you have to remember in the back of your mind, that things always happen for a reason, and they work toward good always. So even if you think that things aren't going the way you planned them, they are probably going the way God sees fit for them to be planned. You just need to sit back, relax, listen to direction, not make as many plans that will penalize you if you do not complete them exactly when they are on your calendar. After you do all that, then you need to thank God for the challenges in your life, because you know that by having constant challenges in your life you will grow into an immensely strong, encouraging, and inspiring person. I promise. That's just how it works. Having a chronic illness of any kind, helps you find your purpose fast, in areas that you never thought your purpose would be in.
During this week think about some of the stuff I mentioned about mitochondrial disease. Visit the /United Mitochondrial Disease Foundation website or Mito Action's website to learn more about mito as well. There are so many people affected by mito, and it's a nasty disease. Once you know you have it picks you up, turns you upside down, and shakes you all around trying to see if you can handle it. All of us with mito though (and my other chronic and invisible illness friends) are warriors. We fight the battle hard. We do not let the disease win, ever, even if we are losing our earthly battle. We always come up on top. Everyone knows us mito warriors are strong and courageous. But all of us also know it just took one word to change our lives forever. The word mito changed my life forever. I'm trying really, really hard to cope with the negative changes and throw some positive in there and help others with mito know that they can make a difference, they can accomplish their dreams. Yes mito changed my life forever, but that's not necessarily a bad thing. Because the other one word that I rely on the most in my life is hope. And we always win when we have hope!
