Wednesday, April 30, 2014

Wordless Wednesday: Mito Crash/ End of the Semester

Tuesday, April 29, 2014

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.

Monday, April 28, 2014

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.


28 year old me.

Sunday, April 27, 2014

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. :)

Saturday, April 26, 2014

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! :)

Friday, April 25, 2014

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?

Thursday, April 24, 2014

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?

These Are A Few of My Favorite Things :)

Since I had a 4 hour infusion yesterday, followed immediately by an overnight sleepy study I did not get a chance to do yesterday's Health Activist Writer's Month Challenge, so I'm doing it today. So yesterday's topic was: We at WEGO Health love hobbies. Tell us, what are YOUR hobbies?
Are you a rock collector? Scrapbooking? Photographer? Dancer? Share your talents. (Pictures encouraged)

If I was being completely honest, it feels like my hobbies are:

  • Going to the doctor
  • Sitting in the waiting room
  • Waiting on phone calls from doctors with lab results
  • Picking up prescriptions
  • Driving back and forth to Indy
  • Fighting with insurance companies
  • Doing home PT
  • Going to the chiropractor and massage therapy
  • Getting infusions
  • Being hooked to IV poles all the time
  • Taking medications
  • Spending all of my disability check on all the things that aren't covered by insurance
  • And oh, so much more
But here are some of my real hobbies:

  • Knitting (when my hands allow it)
  • Cooking when I can stand up long enough or bring my wheelchair into the kitchen)
  • Social Media (Facebook and Instagram mostly, but also Pinterest, Twitter, and LinkedIn)
  • Sitting on the porch and watching my dog play
  • Going to Java Haute to get my coffee every morning
  • Wheelchair hiking

  • Reading when I can focus on the words and see them
  • Sleeping under my heated blanket
  • Visiting with friends when I'm able.
  • Collecting frogs
  • Anything that has to do with orange and pink.

Monday, April 21, 2014

Life Is Only a Reflection of What We Allow Ourselves To See

Today's Health Activist Writer's Month Challenge topic is about reflecting: This is a day to reflect. For the WEGO Health family, we reflect on those who lost loved ones in the Boston Marathon Bombing last year and hope for a bright future for those impacted. Reflect on your journey to this day, what are your thoughts and hopes for the future? 

Reflecting is something that I'm good at. Something that I do almost daily. Reflecting is good for the soul, even though sometimes when you are reflecting it makes you terribly upset and sad. I believe that if you have a chronic illness reflecting is something that you have to do to stay grounded. To keep your feet firmly planted on the ground. To grow deep roots of strength, integrity, compassion, contentment, and peace with the situation you are in at the current point in your life. 

Becoming deeply rooted and standing on a firm foundation are not easy things to do when you have a chronic illness, but they are absolutely necessary. 

The late Nelson Mandela that perfectly displays my thoughts on reflection: 

When you have a chronic illness, it is absolutely imperative that when you are reflecting you are reflecting on your hopes not your fears. I remember being 24 and at the start of this chronic illness journey and finding out I had celiac and ulcerative colitis. Learning that I would have to have IV infusions every 4 weeks for the rest of my life, or take out my whole colon immediately. But, hey, the infusion medication has an 85% chance of causing non-hodgkins lymphoma so you have to get your blood drawn every month too so that we can make sure you don't have cancer. So far I haven't and I've been on it for almost 4 years now. But still. I was 24, couldn't eat any of my favorite foods anymore, or drink beer, and was forced to take a medicine that might kill me. I thought I was the sickest person on the face of the planet.

Who knew everything that was coming next. When the colitis and critical potassium deficiency landed me in the hospital for 13 days and the doctors told me I couldn't live on my own anymore I had to move back to Indiana with my mom from North Carolina, where my whole life was and I was devastated.

When I got up here, I shortly there after found out I had fibromyalgia and then dysautonomia was formally diagnosed that summer (though it had been suspected since the previous October). Fast forward another 1.5 years and I get my Ehlers-Danlos syndrome diagnosis 3 days before I leave to be admitted to the university hospital in our state capital to have every test known to man run on me. They found that the temporary NJ tube that was put in me was working so well I got a permanent surgical J tube placed and while they did that they also did a stomach muscle, small intestine muscle, and thigh muscle biopsy and placed a port for easier IV access because I had been poked and prodded so much through the years + the combination of EDS my veins were shot. Then when I followed up with the metabolic/genetic doctor December 30th of last year, I got my diagnosis. I finally had answers as to why I felt bad all the time. Unfortunately, it was complex I, III, and IV deficiencies which means I don't make energy very well if at all in those 3 of 5 complexes in my body so that is why I'm tired all the time. I also came back positive for something about my cells don't convert to oxygen from carbon dioxide or something like that so that's why I have so much muscle weakness and atrophy. 

I have crazy symptoms, day in and day out. Way too many to list. But the big hitters are sensory issues (smell, touch, sound, and sight are the worst), chronic pain, joint pain, swelling, flushing, crazy high/low blood pressures and heart rates, thermoregulation issues (I take on the temp of my environment so my body temp is often extremely low if I'm in AC), dizziness, tachycardia, syncope, dehydration, and insomnia (writing this began at 4:30 in the morning because I was wide awake), and many more symptoms. 

When I look back to before all this, I realize how selfish with life I really was. I never took advantage of life while I could have taken advantage of it. I was stuck up and thought life sucked. I didn't take care of myself. I did stuff just to be cool. I was always striving to be someone else. I was never trying to be me. Looking back, I never realized how blessed I was. How lucky I was to be so healthy and have such a perfect life. 

Throughout all this though, I have remained positive. I have joined support groups. I have laughed with doctors and nurses. I have become several docs and nurses favorite patient. I have laughed at my own conditions and the murphy's law they often come with. I have had good days. I have had bad days. I have cried. I have screamed. I have been mad at God. But I have praised Him too. And I realize that even though I'm chronically ill, I am blessed beyond belief (with good doctors, nurses, and a support system) and my illness is in some ways a gift from God to help spread awareness to others.

And to close it out, lyrics for one of the best songs ever, that helps people remember who they are:  
"Mirror, Mirror on the wall, Have I got it?‘Cause Mirror you’ve always told me who I amI’m finding it’s not easy to be perfectSo sorry you won’t define meSorry you don’t own me 
Who are you to tell meThat I’m less than what I should be?Who are you? Who are you?I don’t need to listen To the list of things I should doI won’t try, I won’t try
Mirror I am seeing a new reflectionI’m looking into the eyes of He who made meAnd to Him I have beauty beyond compare I know He defines me"

Sunday, April 20, 2014

If I could go anywhere I would go to.....and this is how I would get there :)

Today's National Health Activist Writer's Month Challenge topic is: If you could travel to anywhere in the world, where would you go? Why? We also know traveling with a chronic illness can be challenging, so any tips for others that you can share would be great!

This one is gonna be kind of short. I've already taken my night meds, so I'll be out soon. But wanted to get it in today.

If I could go anywhere in the world I would definitely go on the 14 night Mediterranean cities cruise tour through Royal Caribbean. Not that I've thought about it or anything. Not that my best friend and I keep trying to figure out how we would save the money up for it or anything. Not that I know that it goes to Southampton, England;  Malaga, Spain; Cannes (Monte Carlo), France; Barcelona, Spain; Palma De Mallorca, Spain; Valencia, Spain; Cartagena, Spain; Lisbon, Portugal; Vigo, Spain; and then back to Southampton, England. No, I have never thought about this before at all. Not one bit.

Well, know that we know where I would go, how would I get there? And, better yet, how would I do on the trip. Well, I'm not as versed as packing and figuring out the security of cruise ships. However, I did go on a cruise to the Bahamas right when I was getting sick and we didn't know what it was yet and I actually felt better on the water than off. I was so scared with how much I was going to the bathroom and such that it would make for a horrid trip, but I behaved better on the trip than at home. Maybe it was the fresh, crisp, ocean air all the time. Or maybe I was just having too much fun to notice it.

Anyway, I did, however, just get back from a week long vacation where I had to fly with tube feeding equipment, liquid medications, a wheelchair, and 2 devices implanted in my body.

With a few simple preparations (way in advance) everything at the airport went very smoothly and I was highly impressed.
1) Call your enteral feeding company and see if they have a form that you can fill out that goes to the TSA to let them know everything that you are taking with you that is medically necessary.
2) Call the TSA cares hotline 72 hours before you leave and let them know what kind of accommodations you will be using and what you have implanted.
3) If you need to use a wheelchair for just at the airport due to the long distance walking, call your airline and arrange for a wheelchair escort. But be ready to tip them. They will expect it. Also arrive early because sometimes it takes them a while to get to you.
4) If you have liquid meds you can bring them in the big bottles but I put them in gallon size ziplocks so I could easily pull them out and hand them over to the TSA agents to scan and put them back in.
5) If you have a feeding tube you will also need to unhook just long enough for the TSA agent to search your pump bag and make sure your formula isn't explosive. My hold alarm never even went off in this process.
6) Before you walk through the scanner tell the person on the other side I have a medical device implanted here and here so that they are not surprised when stuff shows up on the screen, then they are a lot less suspicious and are a lot nicer in the "search" process to make sure it really is a medical device.
7) As soon as you get through security, get a gigantic bottle of water so you can make sure you are hydrated.***I even had 2 liters infused the day before to make sure I was good and hydrated.
8) Wear your compression stockings to help with the blood pooling on the plane.
9) Bring a blanket with you on the plane to help with thermoregulation.
10) Board when they say people with disabilities, you have one, it doesn't matter if they can't see it, then you aren't struggling with your carry on and climbing over people to get on the plane, you can be nicely relaxed in your seat while everyone else is hustling to get on the plane.
11) If you have medical supplies make sure you bring them all. Including the IV pump holder that goes on the IV pole. That's what I forgot.
12) You are allowed one free bag on the plane as long as everything in it is medical. Take advantage of that. It can be carried on or checked.
13) If you have a protocol letter from a doctor of what to do in case of an emergency, bring that with you, along with a list of all your meds, all your doctors phone numbers, and emergency contacts.
14) After you've checked everything once, twice, and three times...make sure that you just sit back, relax, and have some fun and enjoy your hopefully very symptom free trip.

Lessons Learned...

Yesterday's Health Activist Writer's Month Challenge post got away from me as I had a very sleepy day yesterday, but I'm gonna do yesterday and today's both today. So yesterday's post was called Lessons Learned and the prompt said this: What’s a lesson you learned the hard way? Tell us a time
when you made a mistake and promised never to make that same mistake again.

I think the lesson I learned the hard way about my health journey is one that I'm always learning, molding, and improving upon even daily. And that would be how to be my own best advocate.

Advocating for yourself is number one on your to-do list if you come down with a chronic illness.

Only you know how you truly feel each and every day, hour, minute, and second. Only you can explain the things going on in your head. Only you can verbalize why that won't work for you, or why you want to try this or that.

The lesson that I'm in the midst of learning right this very moment of my life is that there is a fine line to practitioners between you being an advocate and you being a psych case.

Unfortunately, there have been people in the past (and not a lot of people either the actual statistics for Munchhausen's syndrome are somewhere around only 4% of people) that demand this test or that test or this drug or that drug and the doctors end up finding out that there is nothing wrong with them they are just trying to seek attention by making up sicknesses that sometimes when we begin to advocate for ourselves we get psychiatrists called in on us.

We have to remember to be strong and keep pressing on and keep advocating for what we need.

I have now had psych called on me twice in 6 months. Just because I was advocating for myself.

The first time I was inpatient at a hospital for 9 days. I was not getting my meds on time ever, I was repeatedly being told different stories by every doctor that walked in, my procedures kept getting pushed back keeping me (someone who is never supposed to fast because of mitochondrial disease) for 6 days straight, being lied to by doctors about my lab values, and being treated rudely by the hospitalist. So I was upset, overwhelmed, and vulnerable, and I cried, a lot. But to me this seems to be a natural human response. I couldn't control anything, nothing was being solved, and I was literally sitting there wasting away. But because I kept crying whenever someone came in the room, psych was called in. Luckily for me, the psych also thought I was having a natural human response to what was going on but we did start me on a VERY mild anti-anxiety med to help me be a little more calm while I was inpatient. But my point is the only reason I got psych called on me is because I was asking for answers, updates, my medication. These are simple requests. I was advocating for my self and my health. I needed to know what was going on. Because of my advocating I was immediately a psych case.

The second time I had psych called on me was about 1 month ago. I have to have a sleep study (this week...ahhh) and they were explaining to me everything that will be hooked up to me and I became very anxious. I will openly admit that I AM anxious about things touching my face and there is a whole lot of stuff attached to your face for a sleep study. I told them I didn't think I would make it through without something to help me sleep. So I was sent to a psych for my extreme anxiety of "tests that shouldn't be anxiety causing" and to get one dose of a stronger anti-anxiety med just for the night of the sleep study. Well, I went to the psychiatrist. She spent 20 minutes with me. Asked me 3 questions and diagnosed me with severe clinical anxiety and depression and said she would start me on a very strong anxiety med 3 times a day from now on and in about a month start me on an anti-depressant too. And I'm to see her every 2 weeks. I was so mentally exhausted that day that I did not have the energy to advocate for myself. Now I am on this anti-anxiety med that is making me so un-anxious that I am barely getting anything productive done and it's making me depressed because I've lost my drive for everything. Because I didn't advocate for myself and wasn't assertive about saying I'm just here for one dose for my sleep study I am now suffering more than ever. Luckily, I found out the drug I'm on is mito toxic and my insurance came back and said they gave me a 30 day supply, but the med is not on their formulary so I have to find a different one to take in the future, so I will be off of it probably tomorrow which is when I go back to see her. But if I had advocated for myself then maybe I wouldn't have been on it at all. This is why advocating for yourself is so important. Even if your nervous, you need to stick up for what you think is right for you no matter what.

Another way we can advocate for ourselves is at doctors appointments. Don't be afraid to say I've heard about so and so treatment here's some articles I brought about it, could we consider this for me. Or ask if the doctor has any more suggestions that they aren't using at this point. Or things like that. But you have to be careful here because some doctors are open to suggestions and some doctors DO NOT like when patients bring in information because they think that they are just diagnosing themselves on Google or Facebook groups and making themselves sicker this way. This is a thin line, but most of my doctors are receptive to it.

Finally, the last way we can advocate for ourselves is with our friends and family. It is SO important for our friends and family to understand us. Make it clear from day one that you are an open book and that you will answer any questions as long as they are appropriate. Educate your friends and family about what you are going through. Make sure that they know if you have to cancel plans or not come to a gathering it's not about you not liking them, it's about you not being able to do things that day. Advocating to friends and family is probably the most important, because if friends and family know where you are coming from, then they can help advocate for you too if they are out with you and someone says something, or they are not with you and hear someone talking about you. Having friends and family in your corner is a blessing.

I hope I gave you some insight into what I believe is the most important lesson you can learn while being chronically ill, advocacy!

Friday, April 18, 2014

Life Can Be Challenging, But It Can Also Be Victorious!

Today's National Health Activist Writer's Month Challenge Post is to make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.

1. You never know what kind of day you are going to have. You can never make plans. Or you can make them I guess, but you never know if you will be able to go through with them. Your life is not your own. Your life is your sickness'.

2. You lose friendships you never thought you would lose. People who aren't sick don't stick around long once you become sick. They don't know how to handle all the medical lingo, appointments, medications, medical equipment, constant need for rest, inability to do things on the fly, etc.

3. Your whole life is waiting. Waiting for a new diagnosis, waiting for more tests, waiting for the doctor whose 3 hours behind, waiting for the test results, waiting to feel better, waiting for a cure, waiting for meds, waiting for symptoms to subside. We are always just waiting.

4. Most of time there isn't an answer. You do your part writing down every symptom, every food you ate, everything you did that day. You do all this to try to find a correlation. You track your blood pressure, your heart rate, your temperature. You do all the tests, follow all the doctors orders, go from doctor, to doctor, to doctor. See all the world renowned specialists and sometimes the answers just aren't there. Sometimes it's just too complex. Sometimes the answers just aren't there.

5. Sometimes we lose our friends. We are in these very tight knit support groups on Facebook. We get to know and love these families. We go through trials together, we go through triumphs together. We ask each other for help and give each other advice. And unfortunately. Sometimes one of our dear friends or one of our dear friends children pass away. And that is the hardest part of dealing with a chronic illness. These people that we spend every day with communicating with the internet are one day just gone. We "light candles" by posting facebook pictures of candles with their names and mourn together. We are a family and we mourn together. But it is definitely the hardest challenge of dealing with my health focus. Realizing how many "candles" we have to light on Facebook. And realizing that one day one of those candles could be for me.

1. Waking up every morning and making it through the day. Most people don't realize how hard it is to make it through a day. But for me every minute, every second takes energy and "spoons", and when I make it to bed time (which is progressively getting earlier day after day) I feel like I should do a victory dance every time because I have made it through yet another day through pain, and muscle weakness, and nausea, and dizziness, and blindness, and all kinds of other symptoms. And that's a victory!

2. I am able to do enough homework every day that I keep up in my classes and have an A average every semester. Some people with no excuses of chronic health conditions or other extenuating circumstances can't even say that.

3. I have now learned more than any other time that the big things don't matter. The only thing that matters in this life is that you enjoy and celebrate the little things. The little things are the stuff that the big things are built upon. The little things are the things that keep you going for one more day. The little things show you the big picture, in the long run.

4. Through my chronic illness journey, I have met some of the most awesome people and they have become what I believe will be life long friends. When you are sick it is so nice to have other people that "get" you. I have friends all across the country that I can message on Facebook in an instant and get a message straight back. I have met many of the Indiana friends in person and love to get together with them whenever possible.

5. My chronic illness has taught me that I am able to stay positive despite my circumstances. I am able to overcome my circumstances. I am able to be myself and not my illness. I am able to live and be sick at the same time. I am me. And that is all that is important. I can put everything behind me and still be the me I love to be and find things I love to do to feel as normal as possible. I am able to use my faith in Jesus Christ as my solid rock and what I lean on to feel good about myself.
And that is a big victory in my book. :)

Thursday, April 17, 2014

If your life was a TV show...

Today's Health Activist Writer's Month Challenge is to have a TV Matchup. Think of a TV show that compares to your life. What is it? Who would you be, who would your friends and family be?

This one is a little more difficult. 

I mean besides the obvious I could be on Mystery Diagnosis a million times over. Ya know that show where they spend the whole episode trying to figure out what the heck is wrong with the person only to find out in the end it's one of those rare things that no one has ever heard of. But beyond that, it's a little more difficult so let me think a minute. 


I've been thinking about it for awhile and I think that our family is a little similar too (but not exactly alike) the TV show Parenthood.

In the TV show Parenthood there are 3 kids to the matriarch and patriarch 2 girls and one boy(our family has 2 boys and one girl). One of the kids is a single mom to 2 kids and that would be my mom but she has 2 girls, not a boy and a girl. One of the families is a blended family through adoption, in our family we have a blended family through a second marriage. The other family in the show has multiple kids and our other family has no kids. So there are some differences, but there are a lot of similarities as well. 

First, there is a kid with special needs in the show, but he does not belong to the singe mom, so that is a little off. But most importantly, family is important to us and we all live within a short distance from each other just like in the TV show. We often get together for huge family get togethers and meals just like in the show as well. We take care of each other and sometimes are way too much up in each other's business. But most importantly we are family and we will do everything we can to make sure each other are taken care of. 

So I guess my family is like the show Parenthood somewhat, but not yet all the way. I guess it's interesting to see how our lives are similar to fictional TV shows. I hope you enjoyed getting a bit of a closer glimpse into my personal family life. 

Monday, April 14, 2014

That's Just Crazy Talk

Today's National Health Activist Writer's Month Challenge Post topic is to write about: What’s the most ridiculous thing you've heard about your health condition? Was there any context? What did you think at the time you heard it – and what do you think of it now?

Again, I've got a couple since I've got a couple of conditions.

#1) You're going to die early from dysautonomia because your heart rate is always so high that your heart will just wear out and stop. The truth is you could die early from dysautonomia, but it is much more likely to be from passing out and hitting your head on something and having brain bleeding or from having either the type of dysautonomia I have (pure autonomic failure) or the other terminal type of dysautonomia (multiple system atrophy) and you catch a cold or some other infection and your body is just too weak to fight it off and you die from an infection. But not from your heart wearing out because your always in tachycardia.

#2) Having Ehlers-Danlos Syndrome is just being double jointed, it's no big deal. No, it's not just being double jointed. Our joints are constantly dislocating and coming out of their sockets multiple times a day and every time it does that it does more damage to our tissues and joints. We also have problems with healing from surgery because our stitches don't like to stay together because our skin is too elastic and a whole bunch of other stuff with collagen in our bodies (which is everywhere I'm learning). We have just found out, in fact, this is probably why I quit breathing in my sleep because my windpipe is collagen and relaxes too much when I sleep at night and closes so I can't breathe. We also have teeth issues and a whole bunch of other stuff. All of this popping out of place causes long term damage and daily high levels of pain and the pain killers usually don't work on this type of pain either. EDS also has a huge amount of people that look extremely young for their age (like me) because our skin is so soft and smooth, it's almost like we never age.

#3) If mitochondrial disease is an energy disorder, you should be able to take a nap and feel better. So why don't you just take a nap to get your energy back. A) I do take naps, multiple times a day. B) It doesn't work that way. With mitochondrial disease our bodies literally do not know how to make energy. It's not like we can take a nap and feel all better. Or get a good night's sleep and be ready to go. We do not have the ability to make energy so we  are always trying to catch up. Some days are better than others, yes, but we are never going to be to the point that we have the same amount of energy as a normal person, ever. Because we just don't know how to make the energy.

#4) People with gastroparesis just have eating disorders or don't want to eat. This is so far from the truth. I would love to be able to eat all kinds of food. I was a foodie for goodness sakes. I still watch Food Network all the time. We just can't eat without immense amounts of pain, distension, constipation, diarrhea, gas, and more. We may seem like we have eating disorders because we are constantly refusing food, but that's just because we are trying to save ourselves from the trauma that would come if we did eat.

#5) Tube feedings are a good way to lose weight. Since I've been tube fed I've seen news articles on brides paying several thousand dollars to get NG tubes for 2 weeks before their weddings to lose pounds to fit in their dresses perfectly, I've been in support groups where people have said that they want to get a feeding tube to cut back a few pounds, I've had people ask me how much weight I've lost since I've been on my feeding tube. Well, again, it doesn't work like that (always) either. I've gained a ton of weight (after the initial loss getting used to it) because for the first time in my life I am not malnourished and I am absorbing calories and nutrients properly finally. I've struggled with malabsorption issues for at least the past 8 years consistently and now I'm on a regimen where I am able to absorb nutrients so I am gaining weight. Imagine that.

These are just a few of the weird and crazy things I've heard about some of my chronic diseases. There have been many more, trust me. But I didn't want to bore you with all of the stories. But here is just an idea of why it can be frustrating to deal with people who think they know what you are going through better than you and you have to listen to their "advice" and "support" when it's really just crazy talk.

Sunday, April 13, 2014

These are a few of my favorite things :)

When you're chronically ill. You end up having certain things that you just have to have or think you have to have that make your chronically ill life so much better. I have multiple favorite things. Here are some of mine.

1. My new recliner: I just got it yesterday, but it's already made my life so much better!

2. My coffee that I go and get every day. It's the thing that makes me get out of the house at least once every day. A vivace iced turtle mocha with no whip please. And, yes, my dietitians did count it into my calorie count for my formula. 

3. I love my wheelchair because it saves me so much energy when I am low on energy or can't stand up for long periods of time. 

4. I love my blanket that a friend made for me, it's my favorite colors and has some zebra in there. I bring it with me to all my infusions and hospital admissions. 

5. I love my stuffed animals I've gotten from various hospital admissions. They sleep with me on my bed every night. 

6. I love, love, love my zebra pillow that helps me sit up. I can't sleep laying flat because of my tube feeding and this pillow is comfy and cozy and so soft. 

7. I love my organizer storage caddy thing I keep next to my bed. It has so much health stuff that I could need to grab at any time so I don't have to get out of bed and go hunting for things. 

8. I love my 3 bin storage container, it holds all my tube feeding stuff and is very convenient. I also love the fan that is in the picture next to it. It is on all the time and gives me pure air all the time. 

9. I love, love, love my Vera Bradley large backpack that I transformed into my feeding pump backpack. I get compliments on my lovely bag all the time and no one even knows it's a pump backpack. 

10. I love having my own mini refrigerator in my room. Most of my meds have to be refrigerated since they are compounded so it's very convenient that it's in my room. Also it holds my Dr. Pepper stash nicely too. ;)

Tuesday, April 8, 2014

Off to Work...

Here is today's Health Activist Writer's Month Challenge: What advice would you give to those on the job search? How do you juggle your job and a chronic illness? Any tips for the interview?

This one is a little bit difficult for me because I'm on disability so I'm not in the workforce or pursing work at the moment. But I did at one point work with a chronic illness and I'm hoping to eventually go back to the working world at least part time.

I think the advice I would give people with chronic illnesses who are on the job search is to seriously consider their limitations on their worst day to see if the job they are applying for could be done on that day. Employers don't look kindly to hiring someone and then immediately having the employee take a whole bunch of sick days. So if you can only do a job sitting down when you are in a flare, don't pick a factory assembly line type job where you will be standing up for 12 hour shifts.

I think the key to balancing your job and chronic illness is about the same as the situation I am in now and that is balancing school with a chronic illness. And that is organization, to do lists, and goals galore. I bargain with myself daily. If I can just get this many pages written of my paper written I can take a nap. If I just get this one assignment done then I can take a mental break and watch my favorite TV show. With work you may not be able to take a nap or watch your favorite show, but you can take 5 minutes to rest your head on your desk, or get a cool drink of water, or stretch your legs by walking around the office for a minute. Bargaining with yourself seriously is a self-motivator and helps get a lot of work accomplished, usually.

With the interview you need to be open and honest if you are asked a question that could lead to disclosing your condition but not to offer too much information. Just answer the question as concisely and with as little information as possible. The interview is not the place to let them know all of your stuff.  This could lead to discrimination (even though it's illegal, we all know it happens). I would be honest and just answer the questions to the best of your ability. Sometimes there might be things you need to do to make sure you look presentable and don't fumble through your interview like make sure you are hydrated enough, have had enough salt, are wearing compression gear, have taken all your meds for energy, etc.

I guess that's all the advice I have for getting a job with a chronic illness for now. Hopefully some of it was helpful to you.

Monday, April 7, 2014

Why I Write...

Today's Health Activist Writer's Month Challenge is to talk about why we write. I think I'm gonna do a top 5 list just because I'm not feeling so hot today and that is a way to get it done, but still answer the question.

So here it goes, the top 5 reasons why I write (blog):

1) Because I want to bring awareness to people about all the different chronic illnesses I have and think that I can do that through my blog somewhat. I can teach people about what I'm going through and maybe someone will know more about my diseases and be more educated and less discriminatory.

2) Because I want to help people going through the same thing as me. I want people with chronic illnesses (of any kind really) to be able to come to my blog and say "I get that" "I've been there" "I can relate to this" so that if you have a chronic illness and are reading this you don't feel quite so alone.

3) Because it gives me something to do. Laying in bed all day, every day isn't the most fun thing to do on the face of the planet so it's nice to have something to occupy my mind and sharpen it too.

4) Because it makes me feel better in the moment. Blogging is cathartic. When you are going through something rough it's good to get those feelings out on paper (or internet paper) and sort through what you're going through emotionally. When I blog, I feel better. Blogging helps my physical symptoms in some ways, believe it or not.

5) So that when I'm having those really, really bad days I can go back and read my blog and be like I survived all this stuff, I can survive today for sure. Because I've been through a lot and God hasn't let me down yet. I've always got through it before. It's great to be reminded of what I've been through and where I'm going. What my dreams, goals, aspirations have been and continue to be. Blogging is like my own little personal motivator. It's always on my side, pushing me through the next little valley a little by little. Blogging reminds me I am an overcomer. And every new blog I write, means I'm alive another day. And that is a good thing to me. :)

Sunday, April 6, 2014

Sunday Dinner

Prompt: Who are 5 people you’d love to have dinner with (living or
deceased) and why?

1) The New Pope (Pope Francis)--I'm not even Catholic, but he just seems like such a cool, awesome, down to earth guy and I'd like to listen to him talk for a while. He seems to really love life and helping people. I think I would love to listen to him.

2) Mother Theresa- Because she was awesome and selfless and I just think that I would like some of her humility to rub off on me.

3) Jesus- Because who wouldn't want to have a dinner with Jesus? I mean that Last Supper thing was a pretty big deal.

4) Hugh Laurie- Because he is a great actor and a dang good blue's musician. And he played Dr. House. I bet he could diagnose me better than some of my real life doctor's just from all the episodes he played a doctor. But I'd only invite him if he'd play after dinner cocktail music for me. I love the blues.

5) Florence Nightingale- because in addition to being the like most cool nurse in the army and all that, rumor has it is that she was also the first dietitian. I would love to see what dietetics consisted of back then and how it's different than it is now. And if it's true that she actually was a dietitian as well. 

Saturday, April 5, 2014

If I had a superpower it would be...

Today's Health Activist Writer's Month Challenge topic is if you had a superpower what would it be?

My superpower that I would want is not to be invisible, or to fly, or to have x-ray vision, or any of the normal super hero powers like that. No my superpower is to have an unlimited amount of spoons for the day.

You may be lost if you've never heard the spoon theory, so you should go and read that here.

Now that you know what spoons are, you can see as someone with so many chronic illnesses why I would want that to be my super power.

Right now I'm really struggling a lot with being sick. I've been in crash mode for over 2 weeks now. Really unable to do much at all because my muscles, GI tract, respiratory system, eyes, and more aren't working barely at all.

I'm getting tired of all my selfies being from the laying in my bed position because that's basically all I'm doing, like this one:

I'm tired of always having to use my wheelchair to get around for the simplest of tasks like running into Walmart for one thing, because I don't have the stamina to stand in the checkout line:

And, I'm tired of my view always being the same thing for about 18 hours a day every day:

So, if I had a super power, even just for one day, I would want unlimited amounts of spoons. So I could go out and live and do some things that didn't have anything to do with laying in bed, not having muscle weakness, or giving myself meds in a tube, or having a tube at all, or having to use a wheelchair, or a cane.

If I had a super power for a day, I would not be sick. Just for one day. I would remember what it was like to be normal. What it was like to not have to worry about so many things that you have to remember to maintain your life. So many things that if you don't do can seriously affect your quality of life. 

If I had a superpower, I would live. Truly live. That's all that I wish for really, is a chance to truly live without pain, suffering, meds, cords, tubes, and time spent in bed. I would just live with all the spoons I needed, so there would be no holding me back.

Friday, April 4, 2014

Theme Song

Well, today's prompt is a little more difficult. It says, Imagine your health focus or blog is getting its own theme song. Think “Eye of the Tiger” for Rocky Balboa. What would the lyrics be? What
type of music would it be played to?
I'm gonna give it a go, so here it goes a theme song about my blog overall, since I have too many diseases to focus on just one. I would want it played to some kind of ballad like music that's between like a rock and contemporary feel.

Healing Hopefully
That's what I try to do
Healing Hopefully
It's a daily battle to do

They tell you to Hold On, Pain Ends
But you spend countless hours suffering
But putting on your happy face, 
Because that's what society expects of you

Healing Hopefully
That's what I try to do
Healing Hopefully
It's a daily battle to do

You go from doctor to doctor,
Running test after test
Waiting for the answer to your questions,
But just end up with more questions instead.

Healing Hopefully
That's what I try to do
Healing Hopefully
It's a daily battle to do

You finally find the answer, 
Is not going to be in a lab test,
The answer to healing hopefully, 
Is going to be going to the Lord for rest.

Yeah, Healing Hopefully
That's what I try to do
Healing Hopefully
It's a daily battle to do

But ya gotta just keep holding on, 
Because one day this pain will end
and we will be healed fully, 
no more pain or strife.

So keep on Healing Hopefully
With that smile on your face.

Thursday, April 3, 2014

Keep Calm and Carry On

Today's Health Activist Writer's Month Challenge was to create your own "Keep Calm and Carry On" meme for your health conditions. Since I have so many, I decided to do several. So here they are.

First up is for dysautonomia:

Next is for Ehlers-Danlos Syndrome: 

Next is for Gastroparesis and having a feeding tube as a consequence of it:

And the last one is for Mitochondrial Disease:

Hope you enjoyed my little keep calm posters today, I sure enjoyed making them. :)