Wordless Wednesday: Mito Crash/ End of the Semester

Summer Lovin'. Or Something Like That.

Today's National Health Activist Writer's Month Challenge topic is Summer Lovin': Summer is coming up. What plans do you have? Any family vacation? What do you look forward to in Summer 2014?

Summer is a very hard time for someone with my conditions. People with dysautonomia dread summer, because when summer comes, the heat comes, and the heat causes more symptoms because we are pretty heat intolerant and it causes us to have more symptoms and makes us pass out more. We also lose more fluid through sweat which makes us more prone to fainting as well.

With mito I always feel like my muscles are weaker in the summer and like it's just a little bit harder to breathe in the summer. And with EDS it sees like my joints are more easily pulled out of place than normal. All around summer just isn't a fun time to be chronically ill.

So most of my plans involve staying inside as much as possible and sitting in my recliner and resting.

My biggest plans are to have most of my data collected for my thesis this summer. That is going to be the big undertaking. I also want to go ahead and start making flash cards and study aides for the 2 classes I'm taking next semester because they are really hard and I want to be ahead of the game.

I don't have any vacations planned because I just went on vacation in March for spring break and I can't afford to go on more than one vacation ever.

I think this summer I'm most looking forward to getting some rest and relaxation before I have to go back to school and actually sit in class again. It's going to be so hard. I also want to take some time and go to my aunt and uncles pool to swim some to help me get in better shape somewhat. I also have a couple of books I want to read and some sewing projects I want to work on. I want to have Carolina go through at least the second training class too, if not the third and final one, so that we can get her on the way to being a service dog. But that's about it. Not too many summer time goals. But that's how it should be. Summer is a time for rejuvenation. Relaxation. And reflection.

Dear 16 Year Old Me...

Dear 16 year old me,

Right now you hate your life. You think everything sucks. You can't wait to grow up and get out of this "horrible town" you live in (Charleston, SC folks, seriously, I thought it was horrible).

You have a boyfriend that you keep around just because you love having a boyfriend, not because you love him.

You are in so many clubs at school that you are in just to say that you are in them for your college applications. You're in the student council, yearbook, marine science club, astronomy club, environmental science club, some other random clubs, the French club, the newspaper, DECA, and on and on and on.

You are on the Junior Olympic track and field team and specializing in long distance runs, hurdles 110m, 400m, long jump, and high jump. And you are good. Really good. Like first place and sometimes second at every competition, even states. So good that as of last year you still hold the high jump record for the team (I haven't checked this years stats yet).

You have a job, that you actually like, and a boss, that actually works with your busy school, club, and sports schedule.

You have a family that loves you, even if you're a stupid teenager and don't love them.

You think you are fat when soaking wet you weigh 95 pounds at 5'9".

You are the epitome of a typical teenager. Thinking that everything is going wrong, and it will only get better when you "grow up".

Well, let me tell you what. You have from the time you are 16 exactly 7 years to live. You have 7 years to do whatever you want to do. You have 7 years to stay up late. Go on hikes. Vacation around the world. Find true love. Find good friends. Learn all you can. Love all you can. And give all you can. You have 7 years before your "horrible life" tailspins into the life you will know forever. The life of chronic illness.

You have 7 years to do everything you want to do. 7 years to get all you want out of this life. 7 years before everything you think is so hard now, will be so easy in the future. Things that you think "suck" now you won't even have on your radar in the future.

7 short years from now  you won't even be able to stand up without almost passing out every time, you won't be able to be far away from a bathroom, you will slowly lose your ability to walk (forget about running), you lose your sight sometimes, you will have sensory issues, you will have temperature issues, you will have fatigue issues, you will have memory issues, you will have so many issues you can't even name them all.

In 7 short years, your life will be nothing like what your life that you are planning now will be as you are imagining. But it will be the life that you were given. It will be the life you are meant to live. And ya know what. It will be the life that you will learn to love. It may not be the best life. It may not be the planned life. It may not be the dream life. Or the ideal life. But it is what your life will be. And at 28 years old, you are suddenly more mature than you were at 16 and realize that life doesn't "suck" because we aren't where we want to be, or aren't getting what we want, or aren't the best at everything, and not everything is perfect. No, at 28, you suddenly realize that life is perfect and good because you are alive to fight another day. And that's all that matters.

Sincerely,

28 year old me.

Always Preceding The Miracle

Today's National Health Activist Writer's Month Challenge is: Book Report. What’s your favorite book and how can you tie to your health or life?

I'm gonna be completely honest and admit that I haven't finished the book that I'm about to write about. But I've read enough to know that I can definitely relate it to my health and my life.

The book that I've been reading in between classes, projects, thesis catastrophes, doctors appointments, procedures, and labs is called "One Thousand Gifts" by Ann Voskamp.

This book is a real life memoir of a woman who through some of the toughest of circumstances chooses to lean in on God and fully rely on His grace. She has had lots of unfortunate circumstances in her life including the death of her 4 year old sister at a young age, having to help her brother bury his 2 kids, her mom had to check herself into a psych hospital, and her father couldn't find God. In the book she decides that she is going to dare herself to live fully right where she is...meaning she is going to praise God in the good times and the bad times. She does this by making a list of 1000 gifts that she sees in ordinary things in her daily life. Things from the crackle in the fireplace to cookies that are still warm.

Throughout the book she builds on this theme of euchariesto and comes to the conclusion that as long as thanksgiving is possible then joy is always possible. And Charis=grace, euchariesto=thanksgiving, and chara=joy. So with grace and thanksgiving come joy. Therefore, finding thanksgiving in every day things and living fully with grace in good and bad circumstances brings joy. She finds out that euchariesto--thanksgiving--always precedes the miracle.

A quote from the book says this:

"There it is--the secret to living joy in every situation, the full life of euchariesto...I would have to learn euchariesto. Learn euchariesto--learn it to live fully...If living euchariesto is the key to unlocking the mystery of life, this is what I want. I want the hunt, the long sleuth, the careful piecing together. To learn how to be grateful and happy, whether hands full or hands empty. That is a secret worth spending a life on learning."

It's just a really great, inspiring book.

But back to the original point of this post. I can tie this to my life because this is how I've been trying to live my life. Though chronic illness is not an ideal circumstance there are still things to be thankful. Being put in front of the right doctor at the right time, networking with the right patient to help you be steered in the right direction, finding a new treatment that works, just plain 'ole having a good day. Then there are things that you can be thankful for that have absolutely nothing to do with your health.

I started making a list of things I'm thankful for everyday when I started reading the book. But since then I've started doing something new. I found out about this challenge called 100 Happy Days on my Instagram with the #100HappyDays. Every day you are supposed to take a picture of something that makes you happy for 100 consecutive days. Their website states 71% of people can't complete the challenge and it's usually because they are too busy. That's crazy to me. That you can't find something in your whole day that makes you happy because you don't have enough time to.

Anyway, this is basically thinks why my life is similar to "One Thousand Gifts" because I am always going through some kind of rough situation, but I'm always striving to find something to be thankful for, something to make me have euchariesto, so that I can have joy even in the hard times. I really think it does change your outlook on life. If you are spending your whole day trying to find something that makes you happy you are focusing on the positive things and wondering how to make it a good picture then you are having a positive attitude all day. I'm just a chronically ill gal daring myself to live life fully, no matter what the circumstances are that day. Giving thanksgiving as much as possible because euchariesto always precede the miracle and we could all use a miracle or two. :)

Word Cloud of My Journey So Far

The National Health Activist Writer's Month Challenge for today was to create a Word Cloud of our journey so far and what our blog, and health journeys represented. Mine is pictured below. Enjoy! :)

Fitness Friday

Today's National Health Activist Writer's Month Challenge is Fitness Friday: What do you do to stay fit? Tell us about your efforts in maintaining a healthy lifestyle.

Most of my conditions make it VERY difficult to exercise. In fact, I even have a diagnosis code of exercise intolerance listed in my charts due to my pure autonomic failure (dysautonomia) and mitochondrial disease. 

So staying physically fit is something that is necessary so I do not become deconditioned and make myself sicker due to aiding and abetting in my own muscle weakness progression, but I can't overdo because that can contribute to passing out, flushing, heat intolerance, and ironically muscle weakness progression. Catch 22, right?

But there are a couple of things that I try to do to stay "physically fit" with chronic illness, but believe you me, coming from someone who was an elite athlete and had a dream of making it to the Olympics one day, these seem like not exercise at all too me, even though on most days they are often too hard to complete at all. 

I was doing outpatient Physical Therapy, but it turned out to be not productive for me or the physical therapist since she was unable to understand mito and I was unable to bend on my limitations. Therefore, I was discharged and do my "home exercises" instead of going to outpatient PT 2x a week. I try to do the same exercises I was doing there at least 3x a week, if not every day at least once. When I was in outpatient PT they wanted me doing the exercises 3x a day, and that's just impossible, but I do try my hardest to do 3x a week at least. I have exercises for shoulder/upper body, core, hips, thighs, knees, calves, and ankles. Some of these exercises are extremely simple like put a pillow between your arm and side of your chest and hold tightly for 30 seconds and repeat 10 times, or keep one leg with foot on table so knee is in air and raise other leg straight to meet the knee 10 times, or lay on side and raise leg in air 10 times, or do 30 calf raises. But when you have a progressive muscle deterioration disorder these suckers HURT!! I usually pick 3 exercises for each part of my body each time I do them. I really think this helps slow my progression and I get to do it at my own pace.

Every once in a while, on a really nice, mildly coolish morning, if I have low symptoms of muscle weakness and I'm feeling positive it will be a good day...I will take my border collie, Carolina, on a walk around ONE block. And that does me in for the rest of the day, but it is so worth it, because she never gets to have fun and I feel bad for her. I'm also joining a local dog park this summer so she can have some other doggie friends to play with and get some exercise herself. 

Some days I do yoga to a DVD in my bedroom if I'm feeling really tight and need some muscle relaxation, but I have to be really careful with that because some of the positions increase my chances of passing out.

Some days, cleaning and showering are exercise because some days are just that bad and my heart rate gets high enough that the fact that I'm cleaning and showering totally counts as exercise. 

Since I've been more confined to a wheelchair lately, I've started counting time in the chair as exercise because it requires a lot of upper body strength to move a manual wheelchair. I've also started "walking" with a friend on accessible trails around town in my wheelchair. She walks and I roll. We call it "walk n' roll".

Other than that, there is nothing else I really do to stay "physically fit". And for someone whose life used to be exercise, that's really quite depressing. But it's life. 

I will add, that this isn't just about being "physically fit". I truly 100% believe that physical well-being is dependent upon mental well-being. So another thing that I do is I see a counselor every week. I don't think anyone who has a chronic illness should not have a counselor. It's overwhelming, anxiety causing, just crappy situation luck. It's so necessary to have someone to sound off too, that is paid to listen to you. If you're mind is in the right place, you will feel better physically. But that is just my opinion. 

Anyone else have some tips on how to stay physically fit with a whole bunch of chronic illness thrown your way?

We Are Family

Today's National Health Activist Writer's Blog Post prompt is writer's choice: Write about whatever you like. I've had this idea floating in my head for a couple of weeks now and have been saving it up for a choice day. And I hope I do this justice, and I definitely hope I treat the topic with respect. So here we go.

We are family. We laugh together. We cry together. We do fun things together. We hold each other's hands when things aren't so good. We support each other when times are really, really bad. And we rejoice with each other when things are really, really good.

I belong to the best family a girl could ever ask to belong too.

But I'm not talking about my immediate, blood relatives. Though they are pretty good too. No, I'm referring to the people in the online Facebook support groups that I'm in. They are my ultimate family. The family that truly "gets" me. The family that is ALWAYS there for me, and I do mean always because there is always at least one person that is having insomnia too so I can talk to people all through the night. Or I can talk to some of the people from the other side of the world I've connected with like Australia, New Zealand, or Europe because they are up while we are sleeping. This family is the best.

Even though this is not my "blood family" they are probably closer in a lot of ways than my blood relatives to me, because they know all the crazy, backwards things my body does that I try not to bother my family with. I can go in an Adult tube feeding group and tell them I just had bile spew all over me from my tube and everyone is just like "Man, I hate it when that happens" or "doesn't that stink" and doesn't say anything negative. I can go in a dysautonomia group and talk about how crappy I feel because my blood pressure is 70/45 and they totally understand and say they hope I feel better and tell me to eat lots of salt and drink plenty of water. I can go in an EDS group and talk about how much pain I'm in because my shoulder and hip keep popping out of place, over and over, and over again and everyone understands me there too. It's like instant understanding, compassion, love, and prayers for better days with just a couple of key strokes. And you know their genuine because they have the same needs to be met and have the same posts day after day after day.

But the family that I have grown the closest with for several reasons is the mitochondrial disease support groups. First of all, they tend to be more welcoming and way less drama than some of the other groups (minus one of them, but it's really big and the more people obviously the more drama). The Indiana mito group is very eager to meet up with each other whenever someone has an appointment we post it in the group to see if anyone else is going to be in the area of our appointment so we can meet up because we know we are family. We love to be there to support each other not only through the internet but in person as well. We also plan socials and get togethers as well so the families can get together and we can be "normal" together because everyone is the same. But the other reason I'm extremely close to the mito support groups is that this disease is not a pretty disease. It doesn't treat you nice. And mainly kids are affected. Young, little kids. There are adults too, obviously, because I am one. But you get on these boards and read day after day of little kids that are in the hospital for days to months on end fighting for their life. From things as small as colds can turn into sepsis and pneumonia for us.

But we all rally together, parents post about their child's problem. And everyone prays or sends good thoughts to this child. Tries to offer suggestions of what we do for our issues similar to that of the child (or adult). We check on the person in the hospital or at home. We are in constant communication. And for people who have a disease where it's hard to remember things we are blessed to be able to remember who is in the hospital, who is having tummy troubles, who is having surgery in 3 days, who is starting a blended diet for their tube feeding and we should check to see how that is going. We remember to lift these people, our family up. We do not tear them down. We hold them up when they are weary and can not stand on their own two feet anymore. When someone in our family is at their weakest, someone from our family will step up and do what needs doing for the person that needs help. We show up to visit each other in the hospital. We show up at appointments. And we show up just to talk in the middle of the night on instant messaging if someone just needs a listening ear to get through a tough spot they are in. We show up. Because family shows up for family. All the time.

Most importantly though. We show up when one of us looses the battle. Unfortunately, if you've been around the mito community for any length of time, you've experienced this. It happens way too often and those it happens to are always way too young, no matter the age. I still remember my first experience in the community was a beautiful 16 year old girl named Corynna. I didn't know much about her. Except she was diagnosed less than a year before she passed away. My most recent experience was a 5 year old boy named Finn who knew he was a special boy, according to a news story that was done about him several years ago. In my short 9 months in the mito community I believe I've been exposed to about 30-40 mito casualties, and none of them are fair, just, or easy. And they all hurt just the same.

But every single time that we gain one more "mito angel" almost everyone in the mito community posts a picture on their page of a green candle burning (green is the color of mito disease awareness) and sometimes the persons name is on the candle. We burn our candles in memory of the newest mito angel out of respect to our family. We would hope if it happened to us the same would be done for us. There is just something so touching about scrolling through your newsfeed and seeing so many lit candles in memory of such an innocent life, taken much too early. We are family. I don't know anyone but family that could stay together and cope to get through times like this. We need each other. We need to lift each other up. And we do. We really do. I love my family, that is there for me, and everyone else through the good and bad times. My family that rejoices with me and grieves with me. My family that isn't my family by blood, but my family by heart, my family by choice, my family by strength, hope, and determination. My family who fights like heck for a cure and supports each other at the same time. Thank you family, for all you do. Let's keep fighting this fight together with hope. After all, family sticks together, right?