In Mik’s Words – Where has the time gone?

Jeez, where do I begin!

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 20^th. (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 mikaela@mikshiddenhearts.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.

(click here for Youtube Defying Gravity Video)

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!)

In Mik’s Words – “Medical Whirlwinds and Remembering My Purpose”

Posted by Mik:  After having one of the worst dysautonomia collapsing episodes and all the other symptoms that come along with it, my body still has not fully recovered. Three weeks ago, I was doing fairly decent when abruptly, I developed a strange new symptom. The inside of my body felt ice cold and every time  I breathed out it was like I was in the chilly winter air. I tried to concentrate on the summer school work I was doing at the moment, but the iciness within me was starting to become uncomfortable, and I was feeling extremely weird and “off”.

Knowing my body, I knew something was really wrong so I went to go tell my mom.   It took everything I had not to crumble down to the floor…I felt an intense dizzy / about to pass out feeling. I was able to tell her what was going on when I started to slur my words. My brain decided to stop working from there and every time my mom would try to ask me a question, I could not fully form words to respond back.

My mom dropped everything she was doing and started making phone calls to my doctor.  Then, another new symptom hit.   I felt my eyes involuntary move side to side rapidly. I was becoming prisoner in my body.  For a few moments, I was not able to function correctly whatsoever and despite my attempt to remain calm, it began to frighten me. Then, I started to develop a deep, intense pain within my chest to the point I was crying out. My mom quickly helped me to the car and took off to go past our local hospitals straight to the Medical Center about 40 minutes away from my house.

The car ride to the Children’s Memorial Herman Hospital, instead of the local hospital, was unbearable for me to say the least.  But the longer car ride was for the best since Children’s has more knowledge with my illness and is where my favorite Dr. Numan is. When we did arrive, I did my best to hold onto my consciousness while my mom pushed me in my wheelchair to the ER. I felt as if I was going to pass out at any time and I did as soon as we arrived inside.   As I came back to semi consciousness, I started to have a seizure-like episode. I remember my mom and a nurse helping me through the episode, but then I fainted again. They moved me to one of the ER rooms and I have vague memories of the following couple of hours.  I had extreme brain fog; was speaking in a slow slur and it was hard for me to hold onto a thought for more than a few seconds.  Also, I had trouble sitting up because when I did, my heart would race at a fast rate and I would faint.

I remember Dr. Numan coming in to see me with one of his fellow cardiologists.  He changed some of my medications, thinking I was having a bad reaction to one I was taking for possible Myasthenia Gravis.  Since it was a rough day for me, they considered having me stay overnight for observation.  However, since there was not much more they could do for me at that time and the goal was to keep me comfortable, I went home knowing that I would be able to rest better there.  I was glad to go home, but bothered that, at least at this time, there are not too many more treatments we can try right now besides tweaking my medicine regimen.  The thought broke my heart. I loathe the unknown –  of not being able to find any answers to cure this once and for all.

So my current medicine routine is Florinef 3 times per day.  Plus taking:  Propranolol (for racing heart), and Zoloft (to help increase the Serotonin levels in my brain.  During my testing last year, the spinal tap showed I had low levels of Serotonin.  One theory is if these levels are really low, it can trigger the Vagal Nerve which can set off the Dysautonomia symptoms.)

On a positive side note from these negatives: I was very glad to have a reason to smile that day despite my circumstances.  After laying down for several hours in the ER, my mental fog improved (though still couldn’t sit up very well.)  As I was waiting to be released, here comes strolling in my new nurse for the evening who could be a duplicate Channing Tatum.   After having to force away my Cheshire cat grin and force myself not to look at my mom because I knew without a doubt both of us would burst out laughing, I had to try and answer the usual “how are you feeling” questions he was asking me before moving on to the discharge paperwork.  Much to my embarrassment, my heart rate sped up just from him walking in the room and the heart monitor gave me away.  Maybe I can just blame the lack of blood flow to my brain for how I was acting?  Or the fact that it is rare that I see much of the male species considering I am mostly homebound?

Whatever the reason….it was a good way to end a bad day. : )

Luckily, I have not been in as much pain the week following my trip to the ER.  However,  I have been extremely exhausted, weak, and suffering from worse than usual brain fog. This was a struggle in particular due to having to finish up the school work to meet a deadline.  I was incredibly frustrated because I needed to get the work done, but I could not think straight at all. Getting all the work done took me longer than normal, but I was very relieved when I got it all completed.

Finally, this past Monday was the first morning I woke up feeling better than I usually do and it was the day of my appointment to see my cardiologist, Dr. Numan.  He was happy to see that I was looking much better than I did in the ER, but was not happy to see that my blood pressure is still low despite 3 doses per day of Florinef. He adjusted my medications again (added back the Midrodrine which will help with the low blood pressure) and Amitriptyline which will help with my headaches (though not near as severe as the very debilitating migraines I had in Jan 2011.  These still hurt in a different way and becoming a  problem lately.) We will see how the medications help my symptoms.  And, hoping no severe symptoms rear its ugly head again in the near future,  I will see him again in three months.

Due to the rough time I have been having physically, it has also taken a toll on me emotionally. With the incapability of being able to do much of anything and feeling rotten the past few weeks, all of it combined really brought me down. As I just laid there in bed for days, I started to have long conversations with God. I asked Him what He wants me to do.

Trying to remind myself of my purpose through all of this and praying to continue to try to make something good out of all of this, I asked Him to help me become an even stronger person to help inspire and motivate others. If I can make meaning of this – a purpose – then all of this will not be in vain.  Because I was basically feeling blue and unsure of myself, which can sneak up on me from time to time despite my best attempts to keep it at bay, I spent this quiet time with God repeating this phrase and plea:  I really want to continue to try to turn this situation around and dramatically to do something positive.

This is why Mik’s Hidden Hearts Alliance is so important to me.  If I, with the help of others, can brighten the day of just one teen in my situation, this will be an answered prayer for me.

On the following day when  I still could not completely shake the “blues”.  My mom came to tell me we got a response from one of the teens my charity sent a Hope Kit to. The message the teen’s mother wrote really touched my heart.  It also brought me joy because she sent pictures of his happy smile face with the Hope Kit. It reminded me of who I was and what my purpose is.  There is nothing in this world that I love more than helping others.  And I thank God for giving me such a “quick response” to the prayer I said the day before.  He reaffirmed my purpose through the testimonial sent by that appreciative mom and teen.

Your purpose:  I want to remind all of you who are struggling that you have a purpose, too. I know it may not seem like it in the moments your illness is pulling you down, (trust me, I’ve been there) but you honestly do. You have the power to inspire and help others.  Due to your own experiences, you can even help change other people lives for the better.

Because you are going through your own storm, you can help another person get through theirs.

Reason to smile this week!  I have been having meetings for upcoming events for Mik’s Hidden Hearts Alliance that I’m SUPER excited about. Those details will be available to you all very soon 🙂

Also if you are a teen with Dysautonomia or any other chronic illness and need someone to talk,  you can email me at mikaela@hiddenhearts.org or you can message me on my Miks Hidden Hearts Alliance For Dysautonomia facebook page or website:  www.MiksHiddenHearts.org. Whether it is for personal support or you just plain need someone to talk to, I’m here.

*DYS SONG OF THE DAY : What You Want by Evanescence

This is my favorite band of all time since I was little and I am a HUGE fan of Amy Lee (the lead singer) She’s awesome, and  I hope one day I can meet her personally. This is my theme song, I guess you can say.  It is a song about freedom and to keep on following your dreams and to not let anything get in your way.

Do what you, what you want

If you have a dream for better

Do what you, what you want

’til you don’t want it anymore (remember who you really are)

Do what you, what you want

Your world’s closing in on you now (it isn’t over)

Stand and face the unknown (got to remember who you really are)

Every heart in my hands

Like a pale reflection

Hello, hello, remember me?

I’m everything you can’t control

Somewhere beyond the pain

There must be a way to believe

We can break through