Posts Tagged ‘dysautonomia’

boo-bash-flyer-2016FOR IMMEDIATE RELEASE
 
MEDIA CONTACT:
Lisa Marlowe
Boo Bash 2016 Chair
713-955-8MIK
 
 
Tickets on Sale Now for 5th Annual Charity Boo Bash
 
                                Date:  Saturday, October 29, 2016
                                Time:  6:00 pm – 10:00 pm
                                Place:  Constellation Field – Insperity Club, 1 Stadium Drive, Sugarland
 
HOUSTON, TX (August 22, 2016) –  Don’t miss the best time you’ll have in a costume.  The 5th Annual Charity Boo Bash promises to be a Halloween soiree like no other.  Tickets for the Boo Bash are on sale now at www.MiksHiddenHearts.org.  Admission is $55 and includes dinner, a welcome bag of goodies, and a spooky good time.  Sponsorships for the event are also available.
 
The party will feature a delicious gourmet dinner with dessert, drinks, casino games, prizes, a photo booth, costume contests and DJ Johnny Bravo.  Boo Bash 2016 will be held at Constellation Field, home of the Sugar Land Skeeters, in the Insperity Club, a unique party space behind home plate on the deluxe skybox level.  All proceeds benefit Mik’s Hidden Hearts Alliance (MHHA), a charity for teens and young adults with Dysautonomia and other debilitating illnesses. 12175973_10106804673107420_770890860_o
 
The Boo Bash provides ample opportunities for party-goers to win prizes, both big and small.  There will be silent and live auctions with a variety of items including a Destin Florida Condo get-away and round-trip airfare for two to any location in the continental US.  Raffle tickets will be available with prizes of date-nights for a year, a year of gourmet coffee or a family movie-night out.  Costume contests offer cash prizes for 1st, 2nd and 3rd place winners.  There will be plenty of other chances to win including a prize pull and a 50/50 cash drawing. 
 
20131125-132453.jpgWith the Boo Bash growing in popularity every year, it is becoming the social event of the season.  In previous years, the event has been held at various locations in Katy.  Keri Aschoff, President of MHHA, said, “Boo Bash has sold out for the last three years straight, we moved to a bigger location to accommodate more guests.”  The Insperity Club features large windows overlooking the field and a fun, inviting banquet space for up to 300 people.  “Having our special 5th Annual Boo Bash there will not only allow us to have more guests,” Aschoff said, “it also lets us go bigger and better with decorations and entertainment.  Boo Bash is a can’t-miss event for all adults in our community who want to have a great time and help out a very good cause!” 
 
The venue at Constellation Field also provides a separate lounge/party space to accommodate the special needs of the chronically ill teens that MHHA serves.  Aschoff said, “it’s a way for them to socialize with others who understand their world.”
 
Boo Bash Sponsorship Benefits

Boo Bash Sponsorship Benefits

MHHA is a non-profit organization dedicated to outreach to homebound and hospitalized teens with dysautonomia and other hidden, life changing illnesses. MHHA was founded in 2011 by Mikaela Aschoff, after she fell ill with dysautonomia in her freshman year of high school. The organization provides gifts, hope kits, and monthly socials for these chronically ill young people as well as the annual Anti-PROM, a formal dinner and casino-night party for teens affected by hidden illnesses. MHHA also works to spread awareness of Dysautonomia.

 
Dysautonomia is considered a “hidden illness” because the sufferers often look healthy to the casual observer. It is, however, a complex condition caused by a dysfunction of the autonomic nervous system and can affect the cardiovascular, endocrine, metabolic and gastrointestinal systems. Dysautonomia can cause very painful and debilitating symptoms. For more information, visitwww.mikshiddenhearts.org.
 
If you are interested in donating an auction item or would like information about becoming an event sponsor, please contact Lisa Marlowe at lisamarlowe37@hotmail.com or call 713-261-8727.
Serving #teens and young adults with #Dysautonomia and other life-changing #ChronicIllnesses
wp-1456271913240.jpgAnti-PROM Update – Loving the excitement for all of you coming to Anti-PROM. We have handed out most of our tickets. DON’T MISS OUT!! We only have 3 more tables available. If you OR YOUR GUEST (if you are bringing one) have not registered yet, please do so asap. Don’t wait for closer to the date to try to register as they will be gone by then.
 
**Many of you said you plan on bringing a guest, but your guest has not registered yet. Please do so asap so you do not miss your chance to bring your friend.
Register online at:  www.MiksHiddenHearts.org
(Read Press Release Below)
#Dysautonomia  #ChronicIllness
Mik’s Hidden Hearts Alliance
MHHA Prom Flyer 2016

Press Release:

Anti-PROM for Houston area Chronically Ill Youth – Registration Now Open! 

When:  Sunday, April 24, 2016

Where:  Maggiano’s Little Italy (in the Ballroom) 2019 Post Oak Blvd.  Houston, Tx  77056

 

Mik’s Hidden Hearts Alliance (MHHA), a 501c3 nonprofit charity, founded by 19 year old Katy resident Mikaela Aschoff, will be holding their 4th Annual Anti-PROM for Chronically Ill high school aged teens on Sunday, April 24, 2016 from 6:00pm to 9:00pm.   The event, will be held at the Maggiano’s Little Italy in their Ballroom in Houston, Texas.

 

Who is eligible to attend?  Any teen or young adult who has Dysautonomia and other life-changing chronic illnesses.  Each hidden (chronically-ill) guest is allowed to bring one friend (teen or young adult) as their guest.

 

Special night to include:   Dinner, casino games, music by Johnny Bravo Entertainment and fantastic prizes for each of our hidden (chronically-ill) guests. Attire:  Dress is semi-formal.

 

Complimentary Tickets require online RSVP by April 15.   Tickets are first come, first serve.  Sorry, NO tickets at the door will be available. To reserve your tickets, visit www.mikshiddenhearts.org.

 

Donations are greatly appreciated!  If you would like to contribute financially to the Anti-Prom, donate 100 of your business product for our Welcome Swag Bags or donate game prize baskets for our guests, please contact Mikaela Aschoff at info@Mikshiddenhearts.org.

 

Why is it called Anti-PROM?  MHHA Anti-PROM is the opposite of a “traditional school prom” because it is specially planned and tailored for the health and physical abilities of our guests who are all Prom Kings and Queens in our book!  Our Anti-PROM is uniquely planned which includes no strobe lights and no dancing due to their physical/health limitations, but does include fun deejay music, dinner and sit down casino games in which everyone is included and has lifetime of memory making FUN!

 

 

What is a “Hidden Illness”?  Like Dysautonomia in which MHHA Founder Mik Aschoff has, a hidden illness is one in which the patient looks “normal” on the outside, but their serious illness and debilitating unpredictable symptoms are hidden to the casual observer.  Not all life-changing debilitating illnesses are visible and it is our hope at MHHA to give a voice to those we serve who feel mostly hidden in society, their unseen pain often disregarded and unfortunately sometimes forgotten by their friends due to their frequent hospitalizations and school absences.

 

Thank You!  This event would not be possible without our many generous volunteers and donors who give throughout the year, especially at our annual Boo Bash, which helps make Anti-PROM free to our guests.  They have our most heartfelt appreciation!

 

MHHA is proud partners with Lamb Foundation for Dysautonomia Research and appreciate the dedication of Dr. Numan, Dr. Butler, Rebecca Martinez (Dysautonomia Research Nurse) and the rest of the amazing team at the Dysautonomia Center for Excellence at UT Physicians / Children’s Memorial Hermann Hospital in Houston, Tx.

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We are so excited to have some many deserving hidden teens and college age young adults excited about this year’s Anti-PROM.  We are almost to full capacity so make sure to register you (and your guest if applicable) TODAY!  See below for registration information.

Parents – if you are interested in being a volunteer at the Anti-PROM as a chaperone, please register online at the same Anti-PROM link.  We will try to accommodate as many parents as possible, but must have your registration asap (sorry, not available at the door).  **If a question on the registration does not apply to you, write NA.

Register now for your complimentary tickets for this year’s 3rd annual Anti-PROM for Chronically Ill Teens and College Age young adults to be held at Maggiano’s Ballroom in Houston, Tx.

Tickets are first come first serve and unfortunately no tickets are available at the door.

 


Being chronically-ill during your high school years is tough enough between hospitalization and being homebound most of the time.  Missing your prom should not add to your burdens!

So join us at our 3rd annual Anti-PROM that includes dinner, casino games and prizes for all our hidden (chronically-ill) guests for FREE!  (rsvp required)  (See flyer below for more details)

This year’s Anti-PROM will have MORE games, MORE room (we have the entire 2nd floor!) and MORE concierge volunteers to cater to your needs!

Register now for your complimentary tickets for this year’s 3rd annual Anti-PROM for Chronically Ill Teens and College Age young adults to be held at Maggiano’s Ballroom in Houston, Tx.  (You are welcome to bring 1 teen or college age guest with you)891675_10104429071566950_7413211277773523743_o

Tickets are first come first serve and unfortunately no tickets are available at the door.

Parents – Please inquire availability of your staying to chaperone our event.  If there is space, we would be happy to have you!

Please share with the chronically ill youth you know!  

Title Event Sponsor:  The Follis Family

Prom Dresses donated by:  (Brand new dresses) Love Couture Fashion & Formals & (gently used) Pruning Hooks.  Stay tuned for shopping day details (to be held in late March)

1909162_10104429033158920_2225794116991040197_oSee our website for more details:   www.MiksHiddenHearts.org

#Dysautonomia #ChronicIllness #MiksAntiPROM #Prom

MHHA Prom Flyer 2015psd

1978541_10104429040668870_4568793553702517803_oBeing chronically-ill during your high school years is tough enough between hospitalization and being homebound most of the time.  Missing your prom should not add to your burdens!

So join us at our 3rd annual Anti-PROM that includes dinner, casino games and prizes for all our hidden (chronically-ill) guests for FREE!  (rsvp required)  (See flyer below for more details)

This year’s Anti-PROM will have MORE games, MORE room (we have the entire 2nd floor!) and MORE concierge volunteers to cater to your needs!

Register now for your complimentary tickets for this year’s 3rd annual Anti-PROM for Chronically Ill Teens and College Age young adults to be held at Maggiano’s Ballroom in Houston, Tx.  (You are welcome to bring 1 teen guest with you)891675_10104429071566950_7413211277773523743_o

Tickets are first come first serve and unfortunately no tickets are available at the door.

Parents – Please inquire availability of your staying to chaperone our event.  If there is space, we would be happy to have you!

Please share with the chronically ill youth you know!  

Title Event Sponsor:  The Follis Family

Prom Dresses donated by:  (Brand new dresses) Love Couture Fashion & Formals & (gently used) Pruning Hooks.  Stay tuned for shopping day details (to be held in late March)

1909162_10104429033158920_2225794116991040197_oSee our website for more details:   www.MiksHiddenHearts.org

#Dysautonomia #ChronicIllness #MiksAntiPROM #Prom

MHHA Prom Flyer 2015psd

56813_1697051271356_2728517_o

Mik Homecoming 2010 – Freshman year in High School – Hours before our life changed forever

From the Momma Bear: October is a fun month of fall festivities and homecoming football games. I was just like many of my sweet momma friends 4 years ago coordinating my daughter’s Homecoming pictures, Homecoming mum (it’s a Texas thing!), her homecoming dress, etc. My daughter always had big goals and dreams and she started out her freshman year ready to take charge and make them happen – determined to go have fun in high school while focusing on making good grades so she could go away to college after graduation.

This October 23rd marks the 4th year anniversary when my daughter first collapsed on the dance floor at homecoming dance. Oct 23… the day my daughter’s entire “planned” future was taken away from her (or so we thought then). Her entire high school experience – gone in one night. When something we all take for granted, a working autonomic nervous system, decided to work against her pitting her body against the will of her spirit.56813_1697051351358_2025625_o

We decided to host our first Mik’s Hidden Hearts Alliance Boo Bash in 2012 to turn a very negative date in our world to a positive date (Boo Bash!) in order to raise money to spotlight the needs of the hidden teens, young adults and their families that we serve. October 23rd is also Texas Dysautonomia Awareness Day in honor of Mikaela Aschoff.

Please make plans to attend Boo Bash and help us continue our mission! It is a blast! If you can’t attend, please consider making a donation, sponsoring or purchasing raffle tickets. Go to our website for more information: www.mikshiddenhearts.org

Thank you for helping to make my daughter’s dream and vision of creating Mik’s Hidden Hearts Alliance for Dysautonomia Teens come true and giving the families we serve a voice and help them to remember they are not alone. Oct 23rd is now a positive day in our eyes. It is the date we had our eyes open to a world we did not realize unfortunately existed before we were exposed to it…. that of thousands of young people across the country who are suffering from debilitating chronic illness and their families who are in need and live this life on a regular basis. They are the unsung heroes – some of the strongest people you will ever meet – who live a mostly invisible life and deserve their time in the spotlight.

1796071_10104425760522310_7602960737308177770_oWe are so excited to announce we at Mik’s Hidden Hearts Alliance are partnering again with Maggiano’s Little Italy for the 2015 3rd Annual Anti-PROM for teens & young adults with Dysautonomia and other life-changing chronic illnesses!

Save the Date:  Sunday, April 26, 2015

 We will have MORE space (the entire 2nd floor including the ballroom) and MORE casino games!  

Please message us here if you would like to be on our Anti-PROM notification list.

DID YOU ATTEND ANTI-PROM 2014??  From volunteers to guests, we would love to hear from YOU!  Please fill out this quick survey on your thoughts of our event.  We want to go bigger and better and would love your help!  Click here for the survey.

 

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.10265505_10104429082170700_6095127991770729853_o891675_10104429071566950_7413211277773523743_o1522828_10104429081986070_4502917887365867810_o

ImageJoin us to see Angelina Jolie’s latest movie, Disney’s Maleficent on Friday May 30, 2014 at Santikos Palladium in Richmond, Tx.

All MHHA teens & young adults, their families and our volunteers are welcome to attend!

RSVP so we can expect you!  We are going to (try) to get our group together to purchase the discounted tickets.  But we need to hear from you first!  Click here to RSVP.

Santikos Palladium:  7301 Grand Parkway Richmond, TX 77407 (Just south of Westpark Tollway)  (map)

Time will be determined as the day gets closer (when they release time availability).  We are planning a time approximately 3:00pm.

http://www.santikos.com/movie_details?movie_id=134965&date=2014-05-29

The untold story of Disney’s most iconic villain from the 1959 classic “Sleeping Beauty.” A beautiful, pure-hearted young woman with stunning black wings, Maleficent has an idyllic life growing up in a peaceable forest kingdom, until one day when an invading army of humans threatens the harmony of the land. Maleficent rises to be the land’s fiercest protector, but she ultimately suffers a ruthless betrayal – an act that begins to turn her pure heart to stone. Bent on revenge, Maleficent faces an epic battle with the king of the humans and, as a result, places a curse upon his newborn infant Aurora. As the child grows, Maleficent realizes that Aurora holds the key to peace in the kingdom – and to Maleficent’s true happiness as well.


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.

1978541_10104429040668870_4568793553702517803_o

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.

This slideshow requires JavaScript.

 

 


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.

 

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One of our happy Hope Kit recipients

The next round of the Mik’s Hidden Hearts Alliance Hope Kits for teens with Dysautonomia and other hidden chronic illnesses will be sent out after Anti-PROM.  Hope Kits are filled with teen focused gifts that can be used either for the homebound teen patient or for those hospitalized.

With hospitalizations and the busy fun of planning Anti-PROM, our next round of Hope Kits will go out towards the end of the month.

We would love for you to send in a nomination for the deserving chronically-ill teen in your life.  Click here to nominate.

Please keep in mind we send out Hope Kits as donations become available and work through our nomination list as quick as we can.  To date, we have sent hundreds across the US.

 

If you would like to help donate towards the cost of Hope Kits and shipping costs, we appreciate it!  Click here to donate.

To apply, your nominated recipient must be between the ages of 12 and 19 years of age and be either hospitalized or homebound under a doctor’s care for their chronic hidden illness. This information is kept confidential. Applications will be accepted and Hope Kits will be provided to qualified recipients as donations become available.

Please contact us here to check the status of your nomination.

Want to know more about the impact my team at MHHA is having on teens across the country?  

Watch this video!

 

 


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.