First off it has been awhile since my last update and I apologize. I don’t intend for that to be a normal occurrence, but ever since the month of August hit my life has revved up even more in the crazy department.
I’ve been juggling school work, charity work with MHHA (Mik’s Hidden Hearts Alliance), medical testing, ER trips when my body goes freaky, and just the usual day to day lifestyle with dysautonomia. So now that things are calming down a bit, I am very happy getting to start writing again.
October was one crazy busy month for MHHA and was full of meetings and preparations for the Boo Bash that we held on the 20th. (Scroll down to the end to see some of the pics!) I am immensely happy to say that it went extremely well and I had the great opportunity to meet fellow “hidden” dysautonomia teens as well as some other incredible people at the event. My cheeks were aching by the end of the night because I was smiling so much- getting to meet and talk with everyone brought me happiness that I hadn’t felt in a very long time.
I also must add that I am very blessed to have such an amazing crew filled with friends and family who helped put everything together whether it be from the decorations, food…. all the details it took to make Boo Bash a success. Being surrounded by this great group of people brought me even more happiness as well as assurance for when I got nervous ( I am still getting used to public speaking – definitely out of my comfort zone – which I had to face that night …meh). No words can describe how much love and gratitude I feel for them.
Like many times throughout my long journey, my eyes were opened to new things and I was taught new lessons just from that one night. That one night was an answered prayer, a dream that came true, and another stepping stone down my journey. We raised $11,000 and got to spread our mission to many people that night, as well as give some comfort and advice to the dysautonomia teens and their families that came. (I was so excited to see many of our Dysautonomia families were able to attend! It felt like meeting “old” friends, but yet it was the first time we got to meet face to face. I pray for those of you who had to leave early or were unable to attend because Dysautonomia reared its ugly head. You continue to be in my prayers and please know we have some great teen socials planned for 2013 and look forward to seeing you there!
OFFICIAL DYSAUTONOMIA AWARENESS DAY IN TEXAS – What was an incredible surprise though, was when I was presented with a proclamation signed by both Texas State Reps Bill Callegari and John Zerwas stating that Oct 23 was now recognized as Dysautonomia Awareness Day in the State of Texas (Oct 23 in honor of the day I first fell ill). I was also completed humbled that the mayor of Katy did a city proclamation stating that October 23 is now to be Mikaela Aschoff Dysautonomia Awareness Day in Katy, Texas. I was shocked when it was presented to me, and I was overly consumed with joy. What was usually doomsday for me October 23, the day my life took an unexpected, upside down turn – was now a Dysautonomia Awareness day.
PREPARE FOR AN EVENT BY SLEEPING? Prepping for the Boo Bash meant I had to rest for days on end and could not take part in some of the fun setup festivities leading up to the event (though our volunteers were so nice to make sure I was included in all the decision making!) But rest I did because it was important to me to last the entire night – I am determined to bring about more Dysautonomia Awareness. I was so happy I was not hit with any crazy Dysautonomia episode for those few hours. I went to bed that night exhausted and paid for the energy it took for days afterwards, but ultimately, I was a very very happy girl.
The success of Boo Bash made me very proud and also reminded me always push yourself to your dreams despite what your sometimes doubtful mind, others OR your body says. I remember some of my not so bright days where I was curled up in a ball in pain and feeling miserable thinking that I was going nowhere….and that allowed major doubt to enter the picture and mad me think sometimes there was no hope. However, with faith, I picked myself up and set out to carry out an idea of mine with prayers to God for Him to guide me. My ultimate goals through MHHA is to help other teens and bring about Dysautonomia Awareness… because quite honestly, this is no way for a teen to live their life for years on end. Working together, I want to bring more attention to our little known Dys world and hopefully help start a change in a firestorm of research to help bring relief sooner rather than later.
I did not allow myself to give up no matter how bad I wanted to when doubt crept in. I did not stop praying even when I felt like God was not answering my personal prayers for a miracle cure. It all came together in that one single night, and I am still in awe and joy about it.
So it all comes down to this well known phrase – never give up. Dysautonomia is cruel, tiring, disabling, and painful. We all must fight against all of these and to never lose hope. You may be tired and are running behind in school because you’ve been too sick to even go. You may be in a wheel chair and hate it that you even have to use it and wish that you can walk without getting weak or passing out. You may have been sick from dysautonomia for quite some time and have only just recently got diagnosed. You are sick of being in pain and having to go to school and facing people who just don’t understand and label you as the “weird” kid. You are not alone, there are many like you including me.
You have the power to overcome what disables you – turning the negatives into a positive. Challenge your challenges! You have the whole world at your feet (no pun intended!) so never hesitate to dream big. We all have to keep on fighting and not let this illness that consumes us crush us and dim the light within us. With that, I will not give up on my dream no matter the obstacles that will come. My dream of running along with so many others to find a solution, a way to beat these cruel chronic illnesses. A dream where there are less pained, lonely, and hidden hearts.
**A little announcement, I am working towards starting video blogs or “vlogs.” I will still be writing my usual ones but I thought I would do something new and step out of my shell a bit. With my first vlog, I will be doing a Q&A, so if any of you had any questions whether it be about dysautonomia, MHHA, or anything related with my journey, etc., message me at firstname.lastname@example.org and I will answer them in the vlog ~Thanks!
Dys Song of the day: Defying Gravity (studio version) from “Wicked”– From one of my favorite musicals! The amazing talented Jennifer Richards sang this song at the Boo Bash. This song was one of those “joke” songs me and my mom kid about (sounds like it could have been written for Dysautonomia patients). It holds a great message and because of the “Dys message” makes my mom get teary eyed which I have to lovingly tease her about.
Something has changed within me
Something is not the same
I’m through with playing by the rules
Of someone else’s game
Too late for second-guessing
Too late to go back to sleep
It’s time to trust my instincts
Close my eyes: and leap!
It’s time to try defying gravity
I think I’ll try defying gravity
Kiss me goodbye I am defying gravity
And you wont bring me down!
I’m through accepting limits ”cause someone says they’re so
Some things I cannot change
But til I try, I’ll never know!
Below Photography from Rachel Bannister Photography. (Also was blessed with Alicia Quarles Photography at the event too!)