POTS Reared it’s Ugly Head

We have been doing so well, with Nic being home schooled we are seeing alot less ‘bad’ days and alot more good days!  This has really allowed her to be involved in more things and be successful at all of them!

However, this weekend POTS showed up again like the monster it is!  Saturday we took her and her friend to dinner in between the 2 shows. She was bouncing and talking really fast, I knew then that we were in for a fall. I was hoping she’d make it through to the end of the show, but that was not to be the case!

We dropped the girls back off at 6:45 and walked around down town naperville. At 8:05 (the show started at 8) I got a call from Nicole saying she was running a fever and was very dizzy.  She told me that she was fighting to stay awake and wasn’t able to even sit up.

We rushed back to the theater to find her laying on the floor.  She missed the 2nd show on Saturday and the final show on Sunday.

It get’s easy to forget that she has this disease!!  This weekend we were reminded!  The big lesson from this weekend is simply that we aren’t letting POTS win!  We have to make adjustments but we are not letting this disease win!

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Strong vs Strength

When I hear the word strong I think of the body builders and how strong they must be to lift the weight they are lifting!  When I hear the word strength I think of how strong something must be to do that particular task.  It could be the strength of a horse to pull a plow or that of a rope to pull a car.  However most of us don’t think of the word strength when it comes to a person.

We do often say that person is so strong to deal with that illness or issue but I don’t think we really know what it means for a person to be strong!  When I look at Nicole I see strength.  Not because she is physically strong, although she is!  But because of her mental strength.  Her ability to fight through fatigue that most of us can only imagine blows me away.

This past week we had a busy schedule.  Nicole worked at the barn 3 days, rode 6 days, and on Thursday we visited the Joliet prison (If you want to hear about our experiences let me know).  That meant several days of pushing her body physically and mentally. By Saturday she was exhausted but she still got up at 7 with us and coached volleyball, and then visited a friends haunted woods Saturday night.  By Sunday, I wasn’t sure she was going to be standing however she got up, went to work and then rehearsal.  She was in bed by 6.

Not once did she complain that she was too tired or that she was going to fall over even though I knew that was what she was feeling.  That’s strength, pushing yourself past what is possible and then going further.  It also means knowing when to take a rest and today is her rest day.  She’ll sleep until she gets up and she’ll have a rest day.  This is OK, it’s ok to be strong and then have a rest day.  For me I’ll be working but I will also be in awe of this person who struggles with so much but pushes herself farther than most adults!

 

It is NOT all in your head

A friend’s son was recently diagnosised with Bronchiectasis.  This journey for them took several years and at least 1 doctor telling them it was all in his head.  We didn’t get the ‘it’s all in your head’ talk.. however I know many many families who have.

I’ve also questioned the symptoms myself, is this really happening?? I don’t understand why this is the go to for so many doctors.  We can’t figure this out, it must be all in your head.  I know sometimes it is, sometimes it is in your head.

Funny side story 🙂 Our dog threw up on the carpet today.  Nicole came up to tell me and she was pale! She said, mom I can’t pick it up today.  I told her it was fine I’d get it.  She was frustrated because she couldn’t clean it up without gagging. I told her that sometimes we get in our heads and we can’t get out.

I know there are times when anxiety has gotten the best of me and I have not done something because I simply can’t go.

Let’s try to understand why docs go this way.. and educate them in a good way that just because they can’t figure it out, doesn’t mean it’s not there.

Horse Updates

Its Friday and our awesome horse Duke or Lil Duke as he is known at the barn is doing so well.  He still has a long way to go but he finally has a buddy!  Glitz is another paint and they look so similar.   I mean who doesn’t love this horse??  Last night he did so well and he has the best facial expressions you can really read what he is thinking and most of the time, it is “what do you want now” lol… anyway horse therapy has been the best for Nic and she really pushes to do everything she can to meet this amazing horses needs!  So let me leave you with this super cute picture and imagine him saying “please stop taking my picture!”

glitzanduke

Being an introvert in an extrovert world

For anyone who knows Tony and I, you know that we are very outgoing.  We will talk to people anywhere and I mean anywhere!  We love to do things that pay it forward from paying for groceries for the firefighters to buying breakfast for the cashier we know at our local grocery store.

However neither of us started this way, I was in counseling with I was little because my mom thought I was “to shy” and Tony didn’t really find himself until he was 16.

We have raised all of our kids to be outgoing and friendly to the world.  Each one of them has taken this in a different direction and probably Jon is the only one who is the most like both of us.  This is probably because Jon was 2 when Tony and I met and this has been his whole life.

When Nic came she essentially spent the first 3 years of her life at church.  Being passed around, by everyone!  I love the story of watching our teaching pastor feed her cut up grapes when Christmas morning because mom and dad had to work.

We saw early on that Nic didn’t like crowds.  She would fall asleep the minute the music went up, if we went to a large event she would find a corner to sit in until she was comfortable.  I will admit it drove me NUTS! I didn’t understand why she wanted to sit and watch a  movie when she could get her face painted or play in the bounce house!  As she’s gotten older I have learned that this is really who she is.  She’s an introvert!

She is OK if the crowd forms around her, but not if she has to walk into it!  She also will shy away from large events if she isn’t comfortable.  I realize that being an introvert is more about genetics than environment and she is really just made this way, I just worry that maybe she is this way because of her health issues.

From an early age she’s been excluded, not to be  mean but for her own safety.  She didn’t attend birthday parties until she was 10, she’s only had a handful of sleep overs and those are always with close friends who can handle her health issues.  She’s had to grow up differently from other kids because it simply wasn’t safe for her.

Kids with chronic illnesses have to learn to cope on levels that most kids and adults will never have to learn.  They have to learn to deal with being different, being looked at , and even bullied.  Nic has grown to be an amazing person!  She has a huge passion for animals and especially horses.  She is very empathetic which blows me away because I am not! (her dad is tho!) She never gets frustrated with her friends and their drama and she is always willing to pitch in !!

Learning to live with an introverted child is HARD!  I am the go go go person, I want to be doing it all and seeing it all!  She is more the child to hang back, she’ll go with me, however given a choice she’d probably stay home.  Which is why I don’t always let her choose!!  However, I have to learn as well to balance the go with the stay.  That way we’ll both be healthy!

I hate October

No literally I hate this month.  So many people are like “ooh fall” And “ohh pumpkin spice” and those of us POTS moms are over here going October – you are drunk go home!

If one more person posts a meme on facebook about having all the season in 1 week I am going to scream!  I know you guys think these are funny, but for us they are not!

For us POTS parents this radical change in temps means so many bad bad things.  For example yesterday my normally happy kid was white. I mean the only color she had were her freckles!  She was WHITE and her blood pressure at one point was 77/50 and her HR was 90.  These are NOT good numbers.  These are bad POTS numbers.  Later it did go up to 95/60 and her HR was 77 so that’s better.  Not great but better.

See the October slide is a real honest to goodness thing.  The rapid change in temps, the dropping dew points and pressure wreck havoc on our kids.  They make them exhausted, and barely able to function.

So if you need me I’ll be over here swearing about pumpkin spice and halloween and fall and honestly all of this crazy weather and praying for November where things finally settle down!

Until then I am letting my POTSie sleep, thanking GOD we decided to homeschool and just working away.

Today 2014

nicfirstdx

This picture was taken October 6, 2014.  This was the day that changed our entire lives.  This was the day we met a Doctor who would ultimately change our entire world.  He would give us a diagnosis we didn’t know existed to a disease that so many have and we would learn to live in a world that seems to always be a little like being on a tilt-a-whirl.

POTS has changed our world for the worst and for the better!  We’ve met some amazing people who have the disease or family members who have it!  We have found people in our school, volleyball and church.  People have connected us with others who are struggling to make sense of this.  It has also meant that our life is lived differently.  We look though a different lens one that a little blurry and discolored.

When I look back over the last 4 years I see so many different pictures, ER visits, IVs, but I also see friends and experiences and walks and dinners.  I see a child who has so much empathy for the outside world that I am blown away. I see a child with a huge heart for animals and an ability to calm them in ways that just has to be a gift from God.

I also see some amazing experiences such as Mexico and of course Duke! There is also a sense of sadness over missed opportunities such as sleeping through Blast last year, and wanting to never fly again due to the POTS sickness that follows. However all of these things make us stronger, better and alot closer as a family.

If I could I would take this away from her in a heartbeat, however it has gifted her with such an amazing gift and I will never let that be taken away.

Questions….

Last night we had dinner with some friends and they asked the question that every parent of a child with a chronic illness hates to hear.. “will they outgrow this?”

Well let me see, my crystal ball is cloudy, the Magic 8 ball says “try again later” the tea leaves I read said I’ll live a long and healthy life, my palm reader said this line shows a great love.  So hmm I don’t know!  I don’t know what the future holds! Do you?

Instead of asking will they out grow this, ask how can I support you?  Or better yet, just say wow this must be tough, you are doing great with all the tough decisions you have to make.

I know for many of us, there are just certain questions that we hate being asked and for me it’s that one.  No I don’t think she’ll out grow this, because at 18mths we were told we’d be on the formula for 6mths max.  Its been 12 years.  Yes she has improved but then additional problems arise.  She is a medically complex warrior who struggles every day.  EVERY DAY! She has headaches, pain, extreme tiredness and yet every day she pushes herself to go.  Some days she can only go so far and others she can make it to the moon and back.  So no, we aren’t going to outgrow this, and yes this is her life, however it’s an amazing, incredible, beautiful life that she lives every single day way better than most adults I know!

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In the face of adversity

You know when you have a child with a chronic illness every day is an adventure.  You just never know what life might throw at you!  Yesterday we particpated in the POTS walk!  It was so much fun AND what was really cool was getting to hear a doctor talk to everyone about the disease

What was not so cool?  Having an allergic reaction to the track.  We believe it was made of latex or something similar and Nic had a pretty nasty reaction.  Because of that we didn’t stay real real long but long enough to say hi to a few friends and meet some others.

Then we took our adventure on the road and went to the Volo Auto Museum.  For those that don’t know I am a car enthusiast!  I love all American muscle but GM is near and dear to my heart!  No corvairs there yesterday (such a loss on their part) but they did have some really cool movie cars, including the General Lee!  We also got to see a car from jurassic park, the actual plane from the avengers some old campers and some cool arcade games.  Overall it was a fun day just being a family and celebrating that while life can be unpredictableIMG_0473.JPG being a family still makes everything OK!