Posts Tagged ‘collapse’

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

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After my attempt to go back to school the beginning of my sophomore year and trying to be back in the “high school life”,  I knew it was not meant for me. Besides not being able to keep up with my peers physically and mentally because of my Dysautonomia, it seemed that nothing held the glory that I once saw in my freshman year when I first started high school.  I felt alone in my school despite it being one of the largest schools in Texas.  My two best friends would help me the best they could at school, but unfortunately we were all on different curriculum paths so only got to meet up at lunch time.

I had a difficult time finding someone who could relate to my feelings of living with a life-changing illness while recognizing that I do not prefer to obsess or hyper focus about my symptoms.  (Which I understand can be confusing.  I just have a difficult time focusing on me and do not want to be a complainer.)  I felt out of place and awkward in my classes – especially when the brain fog would hit with a vengeance.  When this happened, simple words would fail me and I would become confused with the easiest of tasks.  Attempting a “normal” personae was exceptionally exhausting to me and trying to pretend it did not bother me was no longer working.

That period of time was terrible for me…more so than usual.  I felt like I was on one side of a glass wall in my classes and my class mates were on the other.  It seemed like they were hesitant to walk to my side of the glass and had a mixture of pity and avoidance in their eyes.  Maybe it was because I represent something that we all want to avoid:  that sometimes negative things in life can happen to someone young unexpectedly and they, like I used to be, prefer to be oblivious to sometimes the harsh realities of life.

Besides having to wake up at 5 in the morning to start my medicine regimen,  I had to go to the school nurse at lunch time for my scheduled array of medicines only to have reality hit me despite me trying to live in denial that I was “fine”.  Each visit, the nurse kindly insisted on checking my blood pressure and despite my assurances that I felt okay (though I really did not), my blood pressure was very low.  And, when I insisted she did not need to call my mom and asked to be able to go back to class, when I got up to try to go, I would pass out (this started happening on Day 2 of sophomore year).  Rightfully so, she did not exactly take my word for how I was doing from then on out.

Trying to make it a full day of school and keep up with homework, I had to humble myself and let go of my pride.  I had to accept the fact I needed help by doing school at home. It made me sad that things were not the same and that everything has changed dramatically.   However, after I made that decision to go to homebound, it felt as if a heavy weight was lifted off my shoulders and I could be my true self.  A girl living with a debilitating chronic illness.   I embraced my homebound “hidden life” with open arms.

(Once again, this picture is proof that you can look “healthy” while having a unpredictable hidden illness.) I was determined to go to my sophomore year homecoming dance because it was the one year anniversary when I first fell ill and I was determined to overcome this date I had dreaded for a year. I did not mind what I had to “pay” for this one night out. Extreme symptoms, exhaustion, low bp, etc for days after this night.

However, this acceptance did not mean I accepted defeat from life.  Just an acceptance that I have to live within boundaries that works for me.  The one event that was very important to me mentally was making it to my sophomore year homecoming dance.  Besides homecoming being a very big deal in Texas, more importantly,  it was the one year anniversary that changed my life forever.  One year ago from that day was when I first collapsed at my freshman year homecoming dance and I could not have imagined then the journey and struggles I was about to face.   So, going to my sophomore year homecoming dance, I didn’t care if I could only be there for five minutes before my symptoms kicked in – I was determined to go to prove to myself I could beat this thing. 

Rachel Banister, a family friend, took the picture of me to the left before the homecoming dance.  One of my best friends, Erin, was behind Rachel making me laugh (even though she did not want to go to homecoming that year, she went to support me.).  That’s what I love about my best friends.  They are always there for me, making me laugh despite my circumstances.  And, I did not mind what I had to “pay” for this one night out. Extreme symptoms, exhaustion, low bp, etc for days after this night.  For me, this was a mental victory.  I could now go to homebound with at least one less regret on what could have been in my high school existence if I had never been ill.

It was shortly after going on homebound and in the middle of one of my many ER trips and medical testing where I found my purpose and how I could bring something positive out of this situation.  God led me to one thing after another until the idea of reaching out to other teens struggling like I was came to life. I grasped that idea to help the “hidden” and moved forward with it with the help of my mom and my adult friends.  Mik’s Hidden Hearts Alliance was then created because I do not want any other Dysautonomia teen to ever feel like they are alone.  I want them to know they do have a friend who cares.   Then and now, reaching out to others fills my heart with joy and my wish is to brighten their day, remind them they are not forgotten and to give them hope.  It makes all the pain and tears I’ve gone through worth while.

Fast forward to today, I am stronger from the things I have battled through and I have great determination for the future.  My relationship with God is closer because of my trials and journey. Though I still have certain struggles both physically and mentally, I strive to always keep my eyes on Him.

I will try my best to walk on the path He deems best for me. I’m not perfect and I’m not a saint, but I sure can honor Him, glorify Him and help spread His word.  Putting my prayers into action, I want to reach out to the ones who feel hidden and to do what I was meant for in this world the best I possibly can.

This has been my journey and I hope it can reach out to any of you who are struggling. Though I have my share of “down” days, it is my daily goal to see the blessings around me.  Your life experiences will take you down the path you were meant to be on. But it is your decision to let your struggles make you stronger or to let them tear you down and break you. 

Reason for me to smile this week:  The planning committee for the Boo Bash to help raise money for more Hope Kits for hidden teens have some GREAT entertainment lined up.  More details will be sent out soon!  Stay tuned!

Dys Song of the day: This song has been really special and important to me.  It is another song     I listened to for comfort and empowerment for the days I was really low.

“Never Surrender” By Skillet

I don’t wanna feel like this tomorrow

I don’t wanna live like this today

Make me feel better, I wanna feel better

Stay with me here now and never surrender

Make me feel better, you make me feel better

You make me feel better, put me back together

I don’t wanna feel like this tomorrow

I don’t wanna live like this today

Make me feel better, I need to feel better

Stay with me here now and never surrender

Posting from Mik’s Mom:  As a mother who ultimately has little control over my daughter’s health, it is a really hard pill to swallow that after helping her to lay down, drink fluids, get her medicines, research like crazy for the latest Dysautonomia information, etc., there is nothing I can do to fix her.  Which leads me to what happened this past Wednesday.

Wednesday afternoon, Mikaela said to me that she feels really really “off”.  Now, Mikaela is far from a complainer.  If anything, I have to pull it out of her what symptoms she is having when I know she is having a really rough day.  For Mikaela to come up to me and tell me straight up that she is feeling “off”, I knew something was really wrong.

I immediately called our wonderful general doctor, Dr. Defriece, just to see if he could take a look at her, check her stats, etc.  (As you know, the local ER has not always been the most productive of trips.)  They were so sweet to tell me to bring her in asap.  However, as I had them on the phone, I looked at Mik and asked her if she was alright.  Because she started doing this odd seizure-like eye movement for a full minute.  She told me in a very droopy, slurred voice “I don’t know”.  I hung up the phone and just as soon as I got Mikaela in the car, she clutched her chest in pain and said, “Mom, we need to go straight to Children’s Hospital now.” (Memorial Hermann Hospital in Houston at the medical center)

Not hesitating (because again, Mik NEVER asks to go), I skipped the doctor’s office and took her to Children’s emergency room about 40 minutes away where we knew her cardiologist team could see her directly.

As I wheeled her in the ER, she told me she does not know how much longer she could hold on (to consciousness).  I arrived at the registration desk and as soon as I gave them her name, Mik completely passed out.  As she “came to”, she was really slurring her words, could not hold her head up and was trying to tell me she did not feel good.  I told the staff she needs to lay down asap.  A nurse came out to help me get her to a room when Mikaela started having a full body seizure-like episode and began going out of consciousness again.

We got her in the room and they quickly began checking all her vitals.  Good news was her blood pressure was in normal range (which is so difficult for us to keep at this level… even with 3 doses of Florinef per day).  The question was:  why is she having a full blown episode if her bp is up AND she is laying/sitting down?  (9 times out of 10, she usually collapses or faints from standing up.)  Plus, her right leg was in a lot of pain (nerve pain) and unable to move it (normal after one of her episodes).

One of Dr Numan’s (remember, he is our angel of a cardiologist) fellow doctors came in to assess her.  Long story short, one of the things he checked was what her heart would do when he had her sit up.  Just from the act of sitting up, her bp went up 25 beats and she passed out again.  He had her lay back down and went to consult with Dr. Numan.

While we were waiting for Dr. N, I quietly prayed for answers.  I used to pray for 100% healing, but since God obviously has a plan for all of this and we are into this illness now for soon to be 2 years, I now pray for answers and a treatment plan that will let her feel semi-normal.   (BTW, we sincerely believe prayers work no matter what God’s answer is.  Because of all the prayers we have received, I know Jesus has healed Mikaela.  No, not necessarily in the physical sense, but a mental and spiritual healing.  She has a maturity and insightful wisdom way beyond her years.  She is one of the strongest people I know and has such patience with her body’s limitations and always has her focus on Jesus, His plans for her and helping other teens in her situation.  She is 95% of the time optimistic and does not pity her situation.  That, my friends, is a miracle.).

Dr. N came back a short while later with his colleague.    He was concerned she was having a really bad reaction to the Myasthenia Gravis medication she began a few week prior (causing the weird seizures).  He decided to increase her tachycardia medication, stop the Myasthenia Gravis medication and gave her a new medication for this unrelenting nausea.  Because there is no magic machine or surgery to help with her illness (I wish!!), having her stay at the hospital at this time was not productive so we got to go home.  (We love sleeping in our own beds!)

After seeing Dr. N, who is like a life-line / security blanket to us rolled up in one, the gravity of Mik’s situation that day really fell on me.  (sorry about the gravity… no pun intended!)  Normally, I can handle all of this in stride because Mik is such a strong “Hakuna Matata” teenager.  We parents do what we have to do, place one foot forward and try to stay joyful despite our kids circumstances in order to bring them comfort.  However, this stage of this journey is bringing on some new teary-eyed emotions that with some people may have come in the first few weeks when she fell ill.  This illness seems to be here to stay for an undetermined amount of time and there is ultimately nothing I can do about it.  It is heartbreaking.  I have no control.

From the stories I am receiving from some fellow moms whose kids have this frustrating illness, many of them do not have the medical support and caring that we have.  The fact that Dr. N and his team does not give up on Mik’s case, I feel blessed and thankful and pray that my fellow moms, most out of state, will find a team to care for their kids just us much.

So, as Dr. N finished his recommendations and said he wants to see Mikaela in his office in 2 weeks, we were waiting for the nurse to bring us the discharge paperwork.  I remembered I had one more question (if you know me, I always have at least one more) and went out in the hall to see if the doctors were still there.  I found Dr. N’s colleague and asked him if he thought Dr. N felt comfortable if Mik has another episode when we leave and try to get her in the car.

Now, mind you, I am being normal mom working out logistics, not really focusing on the “emotions” of the day.  With a set of caring eyes just as heartfelt as Dr. N’s, he told me if she has an episode, they would do anything to make her comfortable, including keeping her for overnight observation.

Seeing those caring eyes [here comes my I-hardly-release-them-tears-especially-in-public] I start blurting out all my fears:  “I just don’t know what to do for her anymore when she has these bad episodes.  Do I take her to the ER?  Do I just keep her at home when she collapses/can’t walk/ has the occasional seizure?  (I know in my heart at this stage of Mik’s journey in 99% of her episodes, we can only treat her symptoms which means the ER trip is semi pointless and leaves me feeling like I am abandoning my girl by not having her “treated” at the ER.)

With understanding, he told me this illness is one of the most difficult things he has to deal with as a physician because no matter how hard we try with cases of Dysautonomia as debilitating as Mikaela’s, it can be frustratingly, well,  chronic and we have to work to find which treatment option works for her.  However, he promised, they would admit her in the hospital during her bad episodes for observation if I felt she needed it.

No, I do not want her admitted for observation – a hospital is not a place to get rest.  I want them to build a magic box that will fix her.  But until that time, the fact that he acknowledged my fears, his own frustration on not having the answers right now,  his caring and the team’s commitment to helping Mikaela made me feel heard and not hidden.

For this, I will continue to count my blessings.

Reason to smile this week:  (*I will let Mikaela give you all the details when she feels up to finishing her blog, but I will give you a quick summary.  We were about to be dismissed when they had their staff change for the evening.  In comes our new nurse with the paperwork and oh my goodness!  We thought GQ lost one of their cover models because he did NOT look like your average nurse plus had the caring personality to boot!  What made me really smile?  The fact that Mikaela’s heart monitor showed her bpm jumped 30 beats when he walked in and there was nothing she could do to hide it.  So glad she was laying down so she didn’t pass out!  We laughed after he left the room when I told her maybe it wouldn’t be a bad idea to pass out when he was around : )  (Hey, you have to find the humor in every situation!)

www.MiksHiddenHearts.org

Written Friday June 30, 2012

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.

I 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.

I 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.

My Reason to Smile this week!  If you haven’t seen them yet, I’m happy to announce our new Mik’s Hidden Hearts t-shirts are now available, go check them out here! 🙂  For every one sold, one will be sent to a fellow hidden teen in a Hope Kit.

 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

Until next time – remember you are not Hidden!  Need to vent or chat?  You can email me at Mikaela@hiddenheartsalliance.org or go to our Facebook page.