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.

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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!

And now a shameless plug! I started a new blog on leadership!  Jump over to https://wordpress.com/view/leadershipsimplifiedonline.com

and check it out!!

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!

 

Today is why…

I have struggled with our decision to pull Nic from school.  Does she get enough interaction does she do enough homework.. heck did we give up too soon?? Then yesterday Nic showed me her back where she’s been having a weird rash.  Her entire back was a rash.  Probably worse than I’ve seen it in a few years.  AND she was running a low grade fever.  Classic signs of a reaction.

Gave her benadryl watched everything real closely and she is slowly coming out of it.  However, the benadryl causes a drop in her blood pressure.  Her norms are 110/70 yesterday and today she’s at 80/50.  So low, but not OMG we are going to die low.

However, going to school would of been impossible.  Right now sitting up isn’t real possible.  Today, today is why I pulled her.  Because she can do her homework when she’s ready. And if that’s tomorrow then cool AND she doesn’t miss critical teaching where she now has to make up hours of lost classroom time.

Deciding to homeschool or online school isn’t easy, and it isn’t the right choice for everyone, but for us it has been the absolute right decision!  Nicole isn’t magically going to get better.  And fall is ALWAYS bad for us, however this fall it won’t be so tragic because we can move stuff around and make sure she’s successful on HER time.

The only downside is I think I have to go work the horse.  Pray for me, lunging him makes me SUPER dizzy!  But I know enough to get him moving and I can take him for a walk and maybe I’ll even take some pix of just him.

No matter what, this is the right decision for us and today proved it!

When your best friend has 4 legs

We’ve all had best friends that one person we could talk about anything to.  The one we’d call in the middle of the night to share a great story with.  I always worry about Nicole having that 1 person who is her everything that she can tell anything to.

She has a few friends who are that close.  Her one friend is a boy – they are working through that weird stage of being friends but being part of the opposite sex.  She has another friend who she claims is her best friend but they are in WAY different places in their lives and I worry that this girl isn’t the best person right now.

Then she has Duke.  Duke isn’t a person (for those of you who aren’t keeping up- Duke is a horse).  Duke is her everything, the one person (horse) she tells everything to. And he understands her, he ‘gets’ her.  He looks for her when he hears her voice and will seek her out when he is unsure.

See a best friend is someone who you can seek out no matter what is happening and they will be there for you.  So right now Duke is her best friend.  And while this might seem sad, it’s not.  Its happy because most of us will never know the love like this.  One that is based on nothing but pure love and trust.

I hope you find a best friend who will love you this way