Archive for the ‘Mikaela’s Words’ Category

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My Hidden Hearts letter jacket (I lettered in life) with the place I spent most of my high school years in the background: Children’s Memorial Hermann Hospital.

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My senior year, and rocky high school journey, have both come to a close. It is completely surreal to me because even though these years have all been challenging and seemed to go by so slow – it went by in the blink of an eye.

You would think that I would be tremendously happy to have these past four years behind me, but in reality I’m filled with a bitter sweetness as I go over the memories, the trials, the triumphs, and answered prayers.  And as I review these last few years, really starting at my “new life” that began on October 23, 2010 when I first collapsed and ultimately learned I had the life-changing often debilitating illness beast called Dysautonomia, I realized I learned 4 key lessons I would not have learned otherwise.

1.     Would I change it if I could?  If I was told that I could go back and change everything, especially becoming stricken with Dysautonomia, to live the life I had originally imagined – I would refuse the offer. Why?  Because despite how difficult this path has been it has been so rewarding in return.  The people I have met, especially my fellow hidden (chronically-ill) teens, I would not have met otherwise makes me not even contemplate for a moment to change the last 4 years.  Sure, I could do without being a human pincushion and the myriad of very unpredictable painful symptoms of Dysautonomia, but I would never trade having these people come into my life period.

2.     Discovering my purpose:  Through difficult times, it is what led me to discover there are other hidden teens and young adults like me and this developed a desire to reach out to them. One inspiring idea led to another and the idea for Mik’s Hidden Hearts Alliance was born. It took a challenging course of four years for everything to fall in its place and for certain prayers to be answered – especially receiving the vital help from volunteers and donors to make MHHA possible. I haven’t always been the most patient in waiting for all my prayers to happen, but when they have, it proved to me that it’s true that God’s timing is perfect.

3.     Pushing forward despite any obstacles life may throw my way:  Though I have improved physically compared to where I once was, Dysautonomia still has its grip on me revealing to me that I still have much healing to do mentally and emotionally. I am still triumphant in spite of it, and I know that God will help me through my struggles and heal the emotional wounds I bear… and that He has many more great things planned for the future. Besides the occasional tug on my emotions, life is kind of quiet at the moment. Currently, I have been meeting with all of my great business and charity mentors to obtain guidance on how to further expand and improve MHHA, as well as getting ready for community college next month (My goal is to pursue a degree in business so I can better serve my charity.)

4.     Despite Dysautonomia being unpredictable:  Dream, set goals, but understand it is okay not to have “all the answers”:  I have many goals for the next few years, but do not have everything exactly figured out yet….and for me that is okay. I am just going to wait and see what happens and where life will take me. In the mean time, I am going to take every little opportunity and adventure that is presented, find enjoyment in each day, run after my crazy ambitious goals, serve others, and break free of the tight hold that Dysautonomia has kept me in for so long.
 

With starting college, I am starting a whole new chapter in my life and this illness can no longer contain my spirit that is ready to soar. I am going to go out and LIVE.

Here is a sweet video my mom made in honor of my 18th birthday and graduation featuring many friends of mine I have met through Mik’s Hidden Hearts Alliance.

Below are some of my pictures throughout my High School journey.  The photos by Jen Culotta are a series we did to do “nontraditional” senior photos.  I wanted Senior Journey photos and just amazed at her beautiful work.  Thank you for following my journey.  To learn more about my charity, please visit www.mikshiddenhearts.org.

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The dress shopping day for last year's Anti-Prom

The dress shopping day for the first Anti-Prom

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I was very honored to be awarded one of the Hope and Joy Scholarship.

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Me and my felllow hidden teens: Michael & Natalia

The second annual Mik’s Hidden Hearts Alliance Anti-Prom for our hidden teens and young adults was a huge success!  

I am still in a bubble of happiness about it (with a little bit of sadness that it’s over…). My devoted family and friends worked so hard for months to pull everything together for this event and it definitely showed. Without them, the Anti-Prom wouldn’t even be possible. I thank you all so much and I love you all. Ya’ll are my heroes.

This year, we held the event at the lovely Maggiano’s Italian restaurant in the Houston Galleria area. The always amazing Mike Eichenberger was our emcee and our night consisted of dining on a delicious dinner prepared by the restaurant, casino games, TONS of prizes and a photo booth from Jonny Black Productions (which was such a fun addition this year!).

 

Swag Bags!  Sponsored by The Abbott Family, The Allen Family and The Toman Family

Swag Bags! Sponsored by The Abbott Family, The Allen Family and The Toman Family

SWAG BAGS:  Each guest went home with a swag bag made possible by the Abbott Family, Allen Family and Toman Family.  Each one was complete with a new edition MHHA t-shirt, MHHA coffee cup, wrist band, candy, drinks provided by Hoist, and more.

 

1265237_10104429087554910_6297330772429939780_oPRIZE  BASKETS:  We also gave away numerous big prize baskets that were completely awesome (if you ask me) with the top 3 prizes included:  a Texan’s themed basket which contained four tickets to their next game (donated through the Katy Classical Academy donation drive/ Johnson Family), 24 inch Flat Screen TV / Blu-ray dvd from the employees at Enterprise Bank Pin Oak location, and Beats headphones/gift cards basket from Enterprise Bank employees at Pin Oak location..

Perhaps one of the biggest highlights of the night was that three news stations came up and did a report on the prom. It was quite a surprise to me and I was both excited and nervous when I was interviewed, but I was pretty pumped that we were going to have word get out to those watching of what Dysautonomia is and what Anti-Prom\MHHA is all about. Much thanks to ABC 13 News, Fox 26, and Univision for covering the event.  I would also like to thank my fellow hidden teen, Natalia Rijos, for speaking Spanish on our behalf for the Univision interview – you are a wonderful spokesperson!  1973369_10104429049466240_4588128782616635838_o

I also want to thank my Anti-Prom committee which includes my co-chairs Lori Allen, my Aunt Ronda, and my mom. Thank you all so much for the hours of work you put into this event and for running with my crazy, over-the-top ideas and making them possible. Lori created the beautiful Anti-PROM masquerade decor, coordinated many details with Maggiano’s and so much more to list. She is so absolutely talented and she ran with the vision I had for the prom and it came out beautiful (You rock Lori!!).

My Aunt Ronda took off a whole week of work just so she could focus on putting together all of the door prizes, prize baskets, and swag bags (as well as running all over town collecting donations). Much appreciation to her team of volunteers across town for literally dropping everything to help her put together all the gorgeous prize baskets and door prizes!!  My grandmother, aka Nana, also helped tremendously with this and I thank you both for both being some of my biggest advocates and for everything you have done for me, this event, and MHHA.

I also want to thank my mom so incredibly much for everything. For staying up late hours creating designs, coordinating, and spreading the word. For running around on the brink of insanity to make sure everything is pulled together – for always being a great mentor, and for being an amazing mom to me and to my two siblings in the middle of it all.

10003634_10104429050923320_6918126023045552876_oFor all of our donation coordinators who went above and beyond by reaching out to their favorite businesses, coworkers, families and friends to gather so many donations that left our hidden guests in awe of the too many to count prize baskets and door prizes.  (Big big big thank you to Lesha Daniel for always quietly working her magic and sharing our story and her daughter’s dysautonomia story so effectively and heartfelt that our community just embraces us to help do their part.  And to Kimberly Smith for working her magic with her coworkers… what generous supporters!)

The Anti-Prom was a magical night and was all the more special to me with this being my senior year. To see the smiles and joy on my fellow hidden teens and young adult mentors faces, was a privilege and I am so honored to be among so many inspiring people.  It is a memory I will always cherish and I look forward to giving other hidden teens this special night for many more years to come.10259926_10203889823911229_3628666037562009240_n

Big thank you to Brett Perroux Photography and Tiffany Daniel Photography for capturing our event beautifully!  See below for their link for the photos.

To see the news reports about our Anti-PROM, click below:

Fox 26 News: Mik’s Hidden Hearts Alliance Anti-PROM

ABC 13 News:  Mik’s Hidden Hearts Alliance Anti-PROM


MHHA Anti-PROM could not be possible without our generous volunteers, donors and sponsors. 

(This list is continuously being updated as we receive the Anti-PROM wrap up details from our volunteers.  Please send your updates to:  info@mikshiddenhearts.org.  We want to make sure all of our generous supporters are recognized!)


1978809_10203877963894736_8939445103350707827_n-Our volunteers who helped set up, deal, supervise, and so much more!  

BIG thank you to our neighbors, The Pinel Family (for everything!!) and our other sweet neighbors (we are so blessed!) Kelly & Rodney who saw a moving van, knew we had Anti-PROM coming up and generously (and blindly!) offered to help move/setup whatever we needed (and boy did we need their help!)

  • Our entire Anti-PROM volunteer team!
  • Maggiano’s Restaurant (and especially event coordinator Allison!)
  • Mike Eichenberger – Emcee
  • ABC 13 News
  • Fox News
  • Univision
  • Katy Classical Academy (for the prize donation drive and selecting MHHA for their Charity of the Month)
  • Pruning Hook’s Ministry for donating dozens of beautiful prom dresses to our hidden teen girls
  • Brett Perroux Photography and Tiffany Daniel Photography – for once again capturing our event beautifully!  Thank you!!
  • Jonny Black Productions for the fun photo booth

 

Thank you Donors!:

  • The Abbott Family
  • The Allen Family
  • The Andrews Family
  • The Bowen Family
  • The Butler Family
  • The Canseco Family
  • The Dudley Family / Lia Sophia Rep Stephanie Dudley
  • The Girgenti Family
  • The Heard Family
  • Patty Hermann
  • The Jinks Family
  • The Johnson Family
  • The Lamb Family / Lamb Foundation for Dysautonomia Research
  • The Leavitt Family
  • The Lee Family
  • The Lyons Family
  • The McWhorter Family
  • The Morello Family
  • The Northcutt Family
  • The Pinel Family
  • The Schwartz Family
  • The Smith Family
  • The Smithers Family
  • The Stilwell Family
  • The Svatek Family
  • The Thorpe Family
  • The Toman Family
  • The Wright Family
  • Blackjack Casino Company (without you, there would be no casino night!)
  • Brookshire Brothers
  • Dr. Catherine Wilder, Smile Design
  • Enterprise Bank Pin Oak Location in Katy
  • Fox Pizza
  • Girl Scout Troop 7109:  Clear Lake / Seabrook
  • Global Kids Project
  • Gringo’s Mexican Restaurant
  • Hoist
  • James Avery Jewelry – Katy location (Cyndi Miller coordinator)
  • Katy ISD Maintenance Dept Coworkers (Kimberly Smith coordinator)
  • Keep Kids Connected
  • Melaney Gibbs-Tarantino
  • Mickie C and Company Realty
  • Midway BBQ
  • Origami Owl – Stephanie Parrish
  • Pilates Powerhouse
  • Sandi Hall – Medical Massage Therapist
  • The Santikos Palladium
  • Tim & Staci Domino – Bath & Body Works gift cards
  • Visible Changes, Inc

MHHA Event Photography:  Guests, volunteers and donors have the rights to use our photos.  If you want to use them for any type of publicity purposes, permission in writing must be granted from us.  Email us at:   info@mikshiddenhearts.org

Tiffany Daniel Photography Anti-PROM Pictures (code to download 4574)

Brett Perroux Photography Anti-PROM Pictures:  Pics below.

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Mik’s Hidden Hearts Alliance is dedicated to bringing positive encouragement and hope to homebound and hospitalized teens who suffer from Dysautonomia and other life-changing chronic illnesses through social outreach, Hope Kits, Hospital Teen Program and Dysautonomia Awareness.  #dysautonomia #chronicillness #Hope4DysTeens #TheHidden Dysautonomia Teens

Please help spread awareness!  Like our Facebook and Twitter pages.

 Learn how you can help MHHA here.

We appreciate all of our angelic sponsors.  With every big or small donation, we are able to help more Hidden Teens.  Special thank you to our Gold Heart Sponsors at Lamb Foundation for Dysautonomia ResearchSpero Rehab and J Knesek & Assoc.

One of our most popular posts:  Originally written by Mik on Friday June 30, 2012 – Reblogging for our new friends.

This week has definitely been the definition of crazy. For a few days, at least, everything was going pretty decent in my life  despite having had some “hiccups” here and there. I enjoyed the blessing of having a period of time where things were calm and my health seemed to be at a stable state. (Stable in being that I can get through the week without any major episodes or symptoms.) Though it was calm, it was unsettling….like the silence before a storm. It felt that way because anything “normal” in my life is abnormal to me and I am so used to everything around me being chaotic and out of control. Nonetheless, I did not take this moment of time for granted and enjoyed it as much as possible.

So I was not surprised when that all came to a quick end this week.

This previous Wednesday, I woke up and went about doing what I usually do, when a dull pain in the upper left part of my abdomen started to annoy me. I ignored it, writing it off like most of the daily aches and pain I deal with. But around five that evening, I was finishing up some online schoolwork when, out of nowhere, started to feel really dizzy and had an uncomfortable internal heat.

166633254932220462_hE9E3kFQ_fI got up from my desk so I could go lay down until these feelings went away, however, gravity had a different idea.  After standing,  a stronger wave of dizziness hit and my legs suddenly became weak and gave out underneath me. I mentally rolled my eyes as I said hello to the all-to-well acquainted floor, and after doing a mental check to make sure I did not injure myself, I called for my mom to come and help me . She and my brother came to assist me, while my  legs were an equivalent to a jelly fish.  So the task of getting me from the front room to the bed took a little longer than expected.

After getting settled in bed, I had to rest until my blood pressure rose back to normal and wait until my legs decided to work again.  (After each collapsing episode it takes awhile for me to get up and move around because my legs can lose their function.)  However,  that dull pain in  my left side that I had been ignoring started to increase until it became extremely uncomfortable.  About an hour later, the pain was to the point of  where it became unbearable and I was nearly in tears. With the pain becoming worse in a short amount of time, and it starting to spread up into my chest, my mom rushed me over to the Memorial Hermann hospital ER.

The emergency room was incredibly busy so it took awhile until one of those ER rooms were available.   By then, I could barely sit up anymore due to all my symptoms, especially the pain, being off the chart. So when we got settled in the room and the doctor ordered some medication to bring me some relief from my pain,  I could have sworn the angels of Heaven themselves sang Hallelujah.

All of the blood work and testing went by in a blur, and afterwards we were waiting  for the results to come back. During that time, I started thinking over about my easygoing days and how much I enjoyed them while they lasted. If you rewind just a few months back, my usual symptoms and even some new ones started to spiral out of control.  It was frustrating because even though I have been on a series of medications that had been working for so long, that didn’t stop the cycles of intense symptoms.

Over the course of previous episodes, I went  through rounds and rounds of tests and I was always disappointed and sad when the results came back normal….and to some that may sound weird. Why am I disappointed because of that? Wouldn’t anyone be happy to have this so called good feedback? In my case, it is frustrating to get back “normal” results because that means that my team of doctors goes back to the drawing board on what is triggering these extreme episodes.

6262012I know if I received an official co-existing diagnosis that resides along with my Dysautonomia, it would not make me all healthy again and solve everything. It would at least, though, be able to help my doctors to figure out another form of treatment  to help calm my out-of-control symptoms.  So when the ER doctor finally came in with the news that all the results were “normal”, I crumpled into tears as soon as he left. I want to know what is causing all of my pain, but what I want to know even more is to find out why I am abnormal and extreme in even the Dysautonomia world.

Before I go on, I want to say to those that read this that are suffering from Dysautonomia like I do, or from any other chronic illness; do not be discouraged from what I have written here.  Whenever I receive disappointing results or whenever I cry, it is never out of losing hope.  This just means that there is another obstacle to overcome, and over every obstacle is the other side, which hope lies.

Due to my  stubborn nature, I NEVER give up. I’ll never give up trying to fight through an obstacle. The hospital is my battlefield, Dysautonomia is my enemy. My tears are just a sign of my battle.  I don’t know what different things you are going through, all of our stories are different, but at the same time they are similar:  we are the “hidden” with invisible illnesses that can wreak havoc in our lives.  We are in this battle together.

I hope I can inspire you to never give up, to never stop fighting.  Always keep moving forward through your obstacles because eventually you will win and get to the other side. So I kept this mantra in mind when they sent me home and it brought me comfort.   However, I will not lie.  I was down for the rest of the week and had pity parties here and there, but I shook it off afterwards and kept on pushing forward.

The good news is that after days of resting, I have been slowly recovering and was even feeling strong enough to go see the outside world this past weekend. Right now, there is nothing else anyone can do at the moment until my main cardiologist returns from out of town. But until his return…..I will just have to take it easy and treat all my symptoms as needed and sing the good ole Hakuna Matata lyrics.

 Now for the Dys Song of the Day:  I always flip to this song on my ipod (which is practically attached to my ears 24\7) when I’m having a low day or in need of some empowerment . It gives me a reminder that God is still there and that He is watching over me.

Skillet- Whispers in the dark

No

You’ll never be alone

When darkness comes I’ll light the night with stars

Hear my whispers in the dark

No

You’ll never be alone

When darkness comes you know I’m never far

Hear my whispers in the dark

Whispers in the dark

 


Mik’s Hidden Hearts Alliance is dedicated to bringing positive encouragement to homebound and hospitalized teens who suffer from Dysautonomia and other life-changing chronic illnesses through social outreach, Hope Kits, Hospital Teen Program and Dysautonomia Awareness.  #dysautonomia #chronicillness #Hope4DysTeens #TheHidden

Please help spread awareness!  Like our Facebook and Twitter pages.

 Learn how you can help MHHA here.

We appreciate all of our angelic sponsors.  With every big or small donation, we are able to help more Hidden Teens.  Special thank you to our Gold Heart Sponsors at Lamb Foundation for Dysautonomia ResearchSpero Rehab and J Knesek & Assoc.

 

20140202-213006.jpgSeveral months ago I had Kelly, who is a friend of mine and fellow hidden teen, approach me about an idea she had for her project which would earn her the Stars and Stripes award, the highest recognition for American Heritage Girls. I was completely thrilled when she said she wanted to do a video documentary on dysautonomia awareness and MHHA. She worked long and hard on planning, directing, and interviewing me along with a few other hidden teens, and our dysautonomia specialist, Dr. Numan, up at Memorial Hermann Hospital.

I am so excited to be posting the final product for you all to see, and it would be greatly appreciated if you will share and repost this video.

http://vimeo.com/85077978

Thank you to:

Kelly for choosing dysautonomia and MHHA as your topic, and for spreading awareness. Congrats on finishing your project and earning the Stars and Stripes award!  20140202-212945.jpg

20140202-212957.jpgChad Herold who was our awesome videographer. He is the owner of Rethinkvideo and if you want to check out some of his work you can visit his website here

www.Rethinkvideos.net

The hidden teens who participated in this video – Kyler S. and Madison A.

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August has arrived, and it’s that time once again where school is now starting up. I know that with other hidden teens, besides myself, this time can be a difficult one. It’s hard to swallow that you are going to miss out on yet another year of school. It makes you wish that you could just be ordinary and while the “normies” (normal teens) may groan and not look forward to starting school again, us hidden teens would do anything to be able to.

 
I am entering my senior year and will be homeschooled this year (instead of homebound through the school district); basically the last few pages of a major chapter in my life. For awhile, the blues had a grip on me and images of me having fun at football games, back playing the violin in orchestra, freaking out on finals week, and most of all -walking across a stage in a cap and gown – swirled in my head. It all tugged at my heart, and even though my past high school years hold no meaning due to me NOT actually going to school, I sometimes struggle with the fact the choice of going to school was taken away from me due to my health.

Don’t get me wrong – I enjoy being homeschooled.  I get to dive deeper in subjects that interest me and get to work around my bad dysautonomia symptoms days.  I just miss the gift of having a choice.  Normies – love your ability to have so many choices!  Regardless of the what could have beens, I still would like to have a memorable and special senior year. So that was when I became determined to get rid of the blues and just a few weeks ago was when I came up with an idea.

I was watching the Last Holiday with my family (one of my favorite movies) and I once again became inspired by Georgia’s “Book of Possibilities”: a book with all of the things she wants to do and places she wants to see. In one of our previous MHHA outreach meetings, we created something similar by putting together dream journals for us all to record our long term goals and dreams. However, as I watched the movie I began to think – why not create a type of “Book of Possibilities” specifically for senior year?Mikaela, Dysautonomia and School

By doing this I can have a number of things to plan and look forward to. And as I go through everything on my list, I can take pictures and record all of the fun shenanigans, trips, and things I do so I can eventually put it all together in a scrapbook. With this idea, I can look back on my senior year and see memories and meaning – instead of just Dysautonomia world filled with hospital trips, doctor appointments, physical therapy and plain not feeling good on most days with the reality that sometimes even getting out of bed without pain is an impossiblity.

So after that movie night with my family, I sat down and began to write in my Dream Journal my Senior Year goals and dreams. The “Book of Possibilities” was being formed into my very own “Book of I HAVE POSSIBILITIES”

My list ranges from a variety of ideas and is a combination of small tasks I want to do all the way to big dream trips I would like to take if money was no object and health was decent. Here are some examples:

Drivers Test1. Finally get a drivers permit and license (and hopefully maybe a car at the end of the year?) Wishful thinking!

2. Take a road trip and visit New Orleans (Love love love cajun food!)

3. Bring appreciation goodie bags to the hospital staff at Children’s Memorial Hermann Hospital.

4. Start playing the violin again and learn how to play the piano

5. Try every single recipe in an Emeril Legasse (one of my all time favorite) cook book

6. Become fluent in Spanish

7. Get a henna tattoo (for no other reason than I love the beauty of the designs)

8. Have a Christmas Secret Santa party

9. Rent a limo for me and my fellow hidden teen friends for the 2nd annual Anti-Prom 2014

373043_329156207211715_1073428225_n10. Have an intimate graduation ceremony with my friends and family who have stuck with me throughout this journey.

Even though I will have my bad dysautonomia flare days that will pull me down, I’m so determined to push through and have a good time either way. My thinking is: no, it won’t be a traditional year with the running around the high school, going to the games and dances and graduating with a class. This realization does not mean, though, that I can not make something meaningful out of this senior year and have it special in my own way. I really look forward to adding onto my list throughout the year and what it could bring.

(Homeschool community is fairly new to me, but I have been very encouraged by how welcoming everyone is. And there are so many homeschooling families! I look forward to seeing how my chronic illness world can socialize on a hopefully semi regular basis with the local homeschooling groups.)

Whether you are entering your senior year, your first year of college, or any other grade for that matter; what is your own “Possibilities” list? It doesn’t matter how extravagant or small your goals you would like to do are. Sometimes the small things can have the biggest impact.

Make yours how it would best benefit you, what interests you and most of all what brings you happiness. Write them out and get motivated to try to carry out as many as possible. Hopefully this can help you if you struggle with the school blues as I definitely have.

I wish everyone good luck on their school year, and you are all in my prayers for The Lord to bring you strength, light, and for many “good” Dysautonomia days to head your way!

For more Mik’s Hidden Hearts Alliance updates, check our website at:  www.mikshiddenhearts.org or our Facebook page here.

We help teens and their families who have Dysautonomia and other life changing hidden illnesses.

Dysautonomia Awareness – Support Group – Socials – Hope Kits

Best-top-desktop-summer-wallpapers-hd-wallpaper-summer-pictures-1Okay, let’s face the truth: we chronically ill teens want a “normal” teen summer life, but we are not “normal”. Many of us with a hidden chronic illness LOOK normal, but unfortunately our bodies have a wicked sense of humor and can present very unpredictable and debilitating symptoms. Now add on the Texas summer heat (which, in my case, makes my dysautonomia symptoms worse) and I now face a long summer with extreme exhaustion in weather that makes all my other symptoms worse. So what is a girl like me to do?

There is one small part of me that just wants to crawl in my comfy bed in my dark comfortable room and imagine all my “what could have beens” if I was not sick. The bigger part of me, though, likes to stomp that little part down stubbornly and reminds me that I will NOT let my illness ruin my teen years. I will NOT let it rob me from fun experiences or setting goals. And with that determination, I make a list of the things I CAN do this summer and recommit to myself that I will remain positive… even when the doubt crawls in.

A couple of things to keep in mind: Please note this list is with dysautonomia teens in mind, however, can be modified to your chronic illness. Also, all the below recommendations are meant to be shared with friends! It’s easy to get trapped in the never ending doctor appointments and hospitalizations. Before you know it, weeks have passed since you last spoke to your friends. Give them a call and make socializing one of your biggest priorities this summer! (And let’s encourage all of our “normies”… that is non chronically ill teens… to reach out to their friends who are chronically ill. Their text, phone calls and visits mean the world to us who are mostly homebound.)

The List:

1. Swim! – Yes, I said swim! And no, I am not talking the Michael Phelps world record breaking swimming. I mean the fun leisure swimming with modifications. Besides it being a fun activity, it is one of the most recommended exercises by my doctors and physical therapist (make sure to check with yours!). Gravity isn’t as hard on the body in water as it is on land, which means your body won’t overwork itself. Concerned about the summer heat? Try to find an indoor pool at your local YMCA or go swimming early in the morning or late in the evening. Swim a little… rest… and repeat! Always swim with a friend. Besides it being more fun and you get to socialize, its good for safety too!

2. See the Stars! – Get your inner astronomy buff ready, grab a glow in the dark constellation map from your local library or purchase one from Amazon and head outdoors at night. There is something so peaceful about looking up at the stars and gaining perspective about life. Find a trampoline or grab a blanket and try to identify as many constellations as you can.

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3. Pick your favorite actor Movie Marathon – Pop some popcorn, get into your pjs all day and enjoy your movie marathon in comfort! My pick would be hands down a Johnny Depp movie marathon! He is my all time favorite!

4. Check out free local events – Just about every city has free events during the summer. And remember this motto: when in doubt, go check them out! You might be surprised and have FUN! It is also a great opportunity to meet other people. Concerned about any possible long walks? If you have a wheelchair, like I do, bring it. (I know I had to get over my aversion to using my wheelchair in public. Once I did this, I was able to go out and about to see more for a longer period of time… instead of walking for a few minutes and having extreme exhaustion hit me.)

5. Spread Awareness – Share your story! At my charity Mik’s Hidden Hearts Alliance, we want to continue spreading awareness by sharing fellow chronically ill teens’ stories. Fill out the questions at the link here and let your voice be heard!

6. Serve Others – No matter what our circumstances are, if we focus on serving others it helps us to gain perspective. It feels GREAT to have a purpose for the pain we live with on a daily basis. From random acts of kindness to volunteering at your local hospital, think of all the ways big and small you can serve others. This one accomplishment will not only brighten someone else’s day, it can change your life by changing your perspective.

Once we start focusing on what we can do and not what our bodies limit us to do, there are many entertaining things we can do for the summer. Above are just a few ideas to get you started. What are some of your ideas? We would love to hear from you!

Mikaela, Dysautonomia and SchoolPosted by Mikaela Aschoff with Mik’s Hidden Hearts Alliance.

For more Mik’s Hidden Hearts Alliance updates, check our website at: www.mikshiddenhearts.org or our Facebook page here.

We help teens and their families who have Dysautonomia and other life changing hidden illnesses.

Dysautonomia Awareness – Support Group – Socials – Hope Kits

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Me (Mik) with friends Jackie and TJ

In Mik’s Words:  It has been quite some time since I have written my last post because the monster that is dysautonomia decided to create havoc again by offering up nonstop flaring of debilitating symptoms at the beginning of the year. I have become used to change the ups and downs, so it did not surprise me when I was thrown into yet another storm. It’s in times like these when everything seems to be crumbling and pulling me down that I like to put up a fight and show that I am strong….and that the enemy can’t sway me. 

It was during one of my hospital stays when I came up with the idea to have a prom through my charity, Mik’s Hidden Hearts Alliance, for fellow chronically ill teens who are unable to attend their school’s prom. Being homebound with a debilitating illness, on the surface, can appear to take away so many special experiences such as prom. It made me think of my fellow “hidden” teens and it bothered me to think they would experience sadness when they saw pictures on social media of their friends who were able to attend and they would miss out on a night full of fun, friends, and great memories…..  And that just was not acceptable for me. 

The Anti Prom Vision:  Over the next few weeks, my vision of the “Anti Prom” for chronically ill teens began to develop.  I decided to name it “Anti Prom” because it would be the opposite of a traditional prom and needed to be unique and suit chronically ill teens who may not have the physical endurance to dance or stand. After discussing my idea with my mom, who fully loved and supported the idea and then discussed the idea with some of our awesome group of dysautonomia families, preparations for the Anti- Prom took off.  Not only did they take my vision and run with it, they made it even better than I imagined.  This event would have never happened without each and everyone of their help, input and ideas!  I will forever be thankful!!

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Krystal, Caitlin and I having fun “shopping” for prom dresses donated by Pruning Hooks Ministry

Local ministry, Pruning Hooks Ministry, generously donated over 80 prom dresses for our guests to “shop” from.  Our Anti Prom committee decided to have a casino night for fun sit down entertainment. 

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Makeover time!

Our generous donors donated some AMAZING prizes including:  Kindle Fire, Wii System, Flat Screen TV, and much much more.  We were gifted with so many prizes that each hidden teen did not leave empty handed.  Ulta donated makeup supplies to help with our teen girls makeovers (and some amazing makeup and hair stylist came to help!)  

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Cake by Creating Memories Cakes and Catering

The much anticipated night was held on May 3, 2013 and was held at the beautiful Courtyard on St. James Place.  Their service, staff and dinner was impeccable!  Our guests enjoyed appetizers (courtesy of Frito Lay and a gorgeous fruit display by Creating Memories Cakes & Catering), sit down dinner, scrumptious cake (Creating Memories Cakes & Catering), deejay services by Johnny Bravo, fun casino games (courtesy of Blackjack Casino Rentals) and professional photography by Tiffany Daniel, Carl Miller and Brett Perroux. 

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Table erupted in cheers when players beat the dealer!

I was excited when the night of the Anti-Prom finally came around. I was incredibly happy to see our teen guests interacting and having a great time – the smiles on everyones’ faces were priceless. The experience was kind of surreal, like a dream. For most of the night, it was difficult to tell who was having more fun:  us teens or our adult volunteers who led the games. 

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Justin, Michael and Danni pondering their next move!

I was so overjoyed that a simple vision of bringing light to the hidden – having this Anti Prom –  was being fulfilled that night.

Due to my own struggle with this illness and the isolation and hardships it can sometimes bring, it is my personal mission to try to help other chronically ill teens not to feel hidden or miss out on some fun teen experiences.   No one should have to feel invisible and lonely; teens with dysautonomia or other illnesses should know that they matter, that there are people who care, and that they are not alone. 

I am very thankful for all of our volunteers (so many to list!) who made this night happen. 

I am not completely sure they, including our donors, realize the full extent of what they gifted us teens that night.  For them, it may have felt they were helping to give chronically ill teens a fun night away from doctor appointments and hospitalizations. 

But for us teens, it was more than a night.  It is a cherished forever memory. 

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Dysautonomia teen Josh was the grand prize winner for the evening (Flat screen tv and Wii gift package) Congratulations Josh!

 

Below are more fun pictures from the night….  Also, as a reminder to those who are still learning about hidden illnesses.  Excluding our volunteers, most of those pictured do not “look” sick, however, they suffer daily from debilitating chronic illness.

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