ImageDysautonomia Seminar coming to Houston on May 17 hosted by Mik’s doctors at the Dysautonomia Center for ExcellenceTIRR Memorial Hermann and UT Physicians – RSVP asap!

Seminar is FREE, but more than likely will be to capacity. So make sure you get your rsvp soon.  See the picture to the left for more details.

Wished we could attend ourselves, but it is Mik’s big graduation celebration/18th birthday. TIRR rep will have our information there to distribute. Let us know if you will be attending!

 

 


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.

ImageGreat hearing how excited all of our guests are getting for the upcoming much anticipated Anti-PROM!  One question we are getting frequently is if our guests will be wearing masks since our theme is a Venetian masquerade.  Answer?  Some are and some will not.  It is completely up to you.

Want to bring a mask, but not sure where to get one?  Check out Amazon or your local Party City.

No matter what you choose, we look forward to seeing you!

 

 

 

 


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.

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.

 

Image

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!

http://www.youtube.com/watch?v=ASp53XEiSfY

 

 


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.

A must listen to anthem – Today’s Dys Song of the Day – Her Diamonds by Rob Thomas

Image

Me and Mik on her 14th birthday 2010. (a few months before she first became ill)  I miss the simplicity of “normal” days that I did not recognize as a quiet blessing & miracle back then.

(From the Momma Bear)  We have not had a “Dys Song” in awhile and the one selected today is a must listen to for both the teen patient and their caregiver.  Today’s song is “Her Diamonds” by Rob Thomas.

I personally can relate to this song’s lyrics because some days…I just can not take it anymore – seeing my beautiful kindhearted self-motivated determined daughter struggling with an inner desire that wants to FLY but a body that often times will not cooperate.

Though Mik has learned to push through the difficult days and rarely allows her tears to fall anymore, I can see her pain and discomfort every…single…day.

And this momma’s tolerance, (which is usually long-lasting, enduring optimistic filled “we can conquer all” attitude) to bear it can get diminished in the blink of an eye.  

She should be out hanging with friends full of teenage energy, enjoying Senior-itis and not having to be concerned with how to balance the few hours each week of semi-energy and brain clarity so she can get “more” out of life.

I know my fellow caregivers and helpers can understand what I mean.

  • Yes, I believe faith is strengthen in times of trial (not bliss) and God will get us through the good and not so good days.
  • Yes, I believe we should make the most out of any situation life brings us.
  • Yes, we strive to teach our kids (and they teach us!) how to persevere with grace despite the obstacles in our path.

It’s just on some of “those days”, we have had enough and just wished for a moment in time we could bless our teen with a day of NORMAL.  What normal day would you want for your teen if you could grant it?

Many in the autoimmune community for years have referred to “Her Diamonds” as their go-to anthem.  Though this song has made the rounds, it deserves to be repeated – especially those new to the “chronic illness” world.

According to his website bio, at RobThomasMusic.com, Rob wrote this song about his wife, Marisol, who suffers from an auto-immune disease.

“Her Diamonds,” is the most personal song Thomas has yet committed to disc. Rob’s wife Marisol is courageously battling an autoimmune disease, and “Her Diamonds” was written “about a couple dealing with that on a day-to-day basis,” explains Thomas. “There’s an incredible amount of sadness that comes with something like that.”

Sometimes you have to fall... before you can fly

Sometimes you have to fall… before you can fly

Love the beauty of this song and the heartfelt lyrics.  And the video reminds me there is always tomorrow to start anew….and I always prefer to try a new day with a can-do attitude.

Because let’s face it, there is a good chance today is not the day for finding my magic wand to magically cure all of our chronically-ill teens.  So we can choose to rise above it all, give our teens our care, love, support and most importantly HUMOR to see the good in each day.  

(And sidenote, let’s just pray there are no hidden cameras in the hospitals… Mik tries to pretend she does not like my tapdancing Broadway show to all the alarm beepings  when she is feeling down in the hospital!  Ha!  But I know she secretly likes it… right Mik?  Uh…Mik?)

 

Check out the video below and let me know your thoughts!  Also, make sure to check out the amazing non-profit organization Marisol and Rob Thomas founded called Sidewalk Angels Foundation.  Love Marisol’s perseverance, their charity’s mission and the great work they have done.

 

 

 Her Diamonds Lyrics

Oh what the hell she says
I just can’t win for losing
And she lays back down
Man there’s so many times
I don’t know what I’m doin’
Like I don’t know now
By the light of the moon
She rubs her eyes
Says it’s funny how the night
Can make you blind
I can just imagine
And I don’t know what I’m supposed to do
But if she feels bad then I do too
So I let her be
And she says oooh
I can’t take no more
Her tears like diamonds on the floor
And her diamonds bring me down
Cuz I can’t help her now
She’s down in it
She tried her best and now she can’t win it’s
Hard to see them on the ground
Her diamonds falling down
She sits down and stares into the distance
And it takes all night
And I know I could break her concentration
But it don’t feel right
By the light of the moon
She rubs her eyes
Sits down on the bed and starts to cry
And there’s something less about her
And I don’t know what I’m supposed to do
So I sit down and I cry too
And don’t let her see
And she says oooh
I can’t take no more
Her tears like diamonds on the floor
And her diamonds bring me down
Cuz I can’t help her now
She’s down in it
She tried her best and now she can’t win it’s
Hard to see them on the ground
Her diamonds falling down
She shuts out the night
Tries to close her eyes
If she can find daylight
She’ll be all right
She’ll be all right
Just not tonightAnd she says oooh
I can’t take no more
Her tears like diamonds on the floor
And her diamonds bring me down
Cuz I can’t help her now

She’s down in it
She tried her best and now she can’t win it’s
Hard to see them on the ground
Her diamonds falling down

Songwriters: Thomas, Robert Kelly

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 Research, Spero Rehab and J Knesek & Assoc.

Aside  —  Posted: April 2, 2014 in Dysautonomia, From the Momma Bear
Tags: , , , , , , , ,

ImageI wanted to give my teen friends a sneak peek of just one of the items that will be included in your anti-PROM swag bag.  

Check out the picture to the left for the latest Mik’s Hidden Hearts Alliance Shirt design.  

 

And I am very excited by all the Anti-PROM prize donations that are coming in.  

Can not wait to share this fun day with all of you.

 

Anti-PROM RSVPs due today!  Register online here.

**Hidden teens:  if you are bringing a guest, they need to be registered too through the above registration link.

Last, but not least, I would like to express my appreciation again to my co-chair, Lori Allen, for really going beyond the call of duty to help make this year’s Anti-PROM at Maggianos a success.  


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.  #dysautonomia #chronicillness 

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

Image

Photography courtesy of Brett Perroux

RSVP due tomorrow for Anti-PROM for chronically-ill teens!  Sorry, no tickets available at the door.

Chronically-ill teens Anti-PROM is almost here!  We need your rsvp (and your guest if applicable) by tomorrow!  We want to accommodate as many teens as possible so share the news and get your rsvp in today.  Click here to register.  Sorry, but registering at the door is not available. 

Giving deserving chronically-ill teens something to smile about and look forward to:  Anti-PROM!!!

FAQ #8 – If I am not sure if I (chronically ill teen) will bring a guest, do I have to rsvp us both at the same time?

Answer:  No – Each guest needs to rsvp separately – regardless if they are a “hidden” teen or guest.  However, upon registering guests must include the name of the hidden teen they will be attending with.  Get your rsvp in as soon as possible so you do not miss out.  Then, if you decide to bring a guest, you can have them (or you) rsvp online at that time.  **All rsvps need to be received by April 1st.  Click here to register.

Image

Photography courtesy of Brett Perroux

So help us to reach as many deserving teens as possible – spread the news! Get the word out to deserving chronically-ill teens! Just because you maybe homebound or frequently hospitalized – missing alot of school – does not mean you should miss a traditional teen high school experience like Prom!

Who is Mik’s Hidden Hearts Alliance Anti-Prom for?

Any high school age teen who lives with a life-changing debilitating chronic illness like Dysautonomia and other hidden illnesses. (Not just for Juniors and Seniors!) Also, we love our college age mentors who was a hidden teen to attend as well. Contact us for details.

Image

Photography Courtesy of Brett Perroux

Why is it called “Anti-PROM”? Because we think humor is the best medicine and kindly tease that our chronically-ill teens like to do everything backwards (in Mik’s case, dysautonomia likes to put Mik’s autonomic nervous system on hiatus), it is called Anti-PROM because it is the opposite of the “typical prom”. No high school drama. Great music, but no dancing (due to physical limitations of some of our hidden teens). Casino night with tons of prizes. We are a group of includers – not excluders. Do not know anyone at MHHA? We have so much fun at Anti-PROM, I promise you will leave with friends!

Where is this being held at? At Maggiano’s in Houston, Texas. Coming from out of town? Message us and we will help direct you to some area hotels.

—————————

HOW CAN I HELP?

Image

Photography courtesy of Brett Perroux

We need prizes for each of our guest attendees! Yes, we want EACH hidden teen to go home with fun prizes!! Items can include: themed gift baskets, gift certificates, individual gift items, etc. We also need a GRAND PRIZE. We are also working on Swag Bags for each guest. Have something to give? Or you have a business you would like to promote and can give from 1 – 125 items? Please message us at info@mikshiddenhearts.org.

We also need financial donations. Thanks to our Boo Bash sponsors from October, we have all our basic costs for the Anti-PROM covered. However, we want to go much bigger for these deserving teens than just “basic”. Your financial donation will help this dream come become a reality.

Image

Photography Courtesy of Brett Perroux

Volunteer: We will be hosting a casino game night for our Anti-Prom hidden teens. Know how to deal? Or can you help with setup / clean? Want to collect donation prizes for us? Whatever you can do, we would appreciate it!  Please make sure to contact us here with your availability and preferred area to serve.

Get your RSVP in today – Tickets are first come, first serve. Sorry, but registering at the door is not available. 

Feel free to share the flyer below!

Image

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.  #dysautonomia #chronicillness #prom #POTS