Attempting the impossible

In the last few days I have had 2 friends attempt something that many of us would consider impossible.  One was a half iron man the other a 104 mile mountain bike race (the key word being MOUNTAIN).  Neither finished.  There was no joyous finish line photo showing them so happy to have completed this amazing task, however the fact that they didn’t finish should not diminish the fact that they ATTEMPTED to do what many of us would not even consider.

Life with a chronic illness is often like this.  For many of us, getting out of bed, combing our hair and brushing our teeth are things that we do without even thinking. For those with a chronic illness even considering these things is like attempting to do a half iron man or mountain bike for 104 miles.  The person with the chronic illness sometimes can’t even consider these tasks.

I raise this because for my friends who didn’t finish, they attempted. They got up that morning and put on their gear and they did!  They didn’t stop and go “OMG what am I doing?” Nope they just did.  They pushed their bodies to a point that most of us cannot even imagine and then they pushed some more.

Kids with POTS and other diseases do this every day.  They push their bodies past what most of us would consider and then they push some more.  When they can’t go any further they push on until they are truly and utterly spent.  It is in this moment we should celebrate, we should jump for joy that they have accomplished so much!

This isn’t about celebrating the little moments, because for some these are big moments!  For some leaving the house to go to the mailbox is a huge moment worthy of celebrating!  We should be posting these moments on facebook and instagram and any other social media we want!  We should be cheering just as loudly as we did for those that finished!

Today I am going to celebrate my friends who got up and pushed through something that I am not even sure I would consider even as a joke! And I am going to celebrate when my POTSie does her stuff because it’s worth it!

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Oh the people you meet

I often talk about how small our world is, and yesterday I was again reminded of this fact.

Rewind about a year – when a friend tells me I should connect with a young lady who attends our downtown campus who has POTS like Nicole.  So I friended her on Facebook and we chatted a few times. Nothing to intense just touching base or commenting on each others status.  Fast forward to this summer when I post about  needing a dog sitter this summer.  She replied and said she loves to house and dog sit and would love to help us out.  Great!  She is going to dog sit for us 2 different weekends that we are traveling.

Last night she came over to meet us and our dogs.  She is an amazing young lady who is going to school and managing her life.  It was amazing to watch Nicole listen to her so intently. I have never seen Nic be that quiet with a new person. I haven’t had much of a chance to get her thoughts but I know she was amazed.

This young lady shared how she passed out at a job interview on campus and how she calmly told the person interviewing her what was going to happen and how to handle it.  She did end up in the ER but handled it so well.

I spent alot of time asking her questions and sharing our story.  When you have an illness that noone has ever heard of you find a sense of peace when someone shares your story.

However things got even weirder when Tony came home.  After our new dog sitter left he asked what her name was and when I told him he said OMG her mom is the 4 Eye’s lady.  (This is a whole other story – but for context she gave him new glasses and apparently saved his life LOL)

He gets up and says, do you think she’s still here.. we literally ran out the door to chase down this poor woman.  When he asked her if her mom worked for 4 Eyes and she confirmed that her mom does work there.

Come to find out this is her mom and we had no idea that her daughter had the same disease our child does.  I know I talk about how small our world is but this makes it even crazier!

So now we have a new dog sitter, a fellow POTSie and a connection to our past..

What do you mean your child is sicker than mine??

When you have a child with a chronic illness you spend alot of time in that bubble.  Your view of the world is very skewed because, well it has to be.  You spend time calculating if she does this, then she can’t do that.  You also worry about the things she missing, like Jr. High Camp (but that’s another story)

Nic has a friend who has a chronic illness.  For her, every day is a struggle, alot like it is with Nicole.  She recently had a medicine change it caused her to miss a few days of an activity she was enrolled in.  The mom sent me emails indicating that she would be missing  and when I followed up she let me know what had been going on.  It made me realize that there are kids who are dealing with similar things.

What I also realized is that we often view the world through our own bubble.  The view is skewed based on what we are dealing with and our current circumstances. It makes it harder to see what others are struggling with.  I often try to believe that having a child with a chronic illness makes me more understanding and more aware, but I am not always sure this is the case.  Sometimes I think having a child with a chronic illness simply skews the way I view the world.

Either way, my view is skewed – and sometimes that’s good and sometimes that’s bad.

Pork it’s the ‘other white meat’

Do you ever think about how much of our world revolves around food?  I meet a friend for lunch, I have coffee with a coach, I go out to dinner as a date night with my husband.  Food is the general stablizer in our world.  Everything we do revolves around food, except for my daughter!

For her food is not the be all and end all!  See she’s allergic to just about everything so eating is more utilitarian. She eats because she’s hungry or because we’ve told her to.  She doesn’t eat because she’s tired, or sad or upset, nope she eats … wait for it… because she’s hungry!

What a novel concept!  She’s hungry!!  I don’t write this to get pity for her or for everyone to feel bad but to simply say that this is what she does…

Support!!

I have often written about the support I get from online forums and Facebook.  I found an article that was written about Nicole for KFA (Kids’ With Food Allergies) about 5 or 6 years ago.  In the article it talks about the support I received on their site and how I found the information I needed.

When we decided to pursue the POTS diagnosis I did the same thing, I looked for a group that would provide the support I needed.  This morning one of the mom’s posted this

“No one judged me. No one criticized me. All I got from this group was love and support. Every comment and like helped lift me up.”

This is what the group is about.  This is why it is so important.  When your child has a chronic illness you get information from a million sources. You have people telling you whats wrong with your kid and how you can magically fix it.  Drink this, see that doctor, don’t eat this, do eat that.  Every kid is different and they will all react differently to different things.

Sharing ideas and information is important but doing so in a way that supports is more important.  In this instance the group didn’t say well you should do this or you should try that, they simply supported.  This is so important when you often feel alone in the world.
You tell someone what your child has and they look at your like you are either crazy or you must of misspoken.  Support is critical for the wellbeing of everyone and when you find that support with a bunch of moms from AROUND the world then it is beyond amazing!

If you or your child suffer from a chronic illness find a place where you feel supported, where you can go and ask questions and get the help and love you need!

PTSD

I’ve written about this before but I really feel it deserves another go-round and this is my blog so I can write what I want! 🙂 I always felt that I was a pretty easy going person – I mean I have to have my own way and I want to do what I want, BUT I’ll try just about anything and I’ll even take risks.

I tend to get panicky when it comes to heights and my kids.  I think this is about control, and for those that know me you can keep your comments to yourself! However, it wasn’t until my daughter got sick that I really began to understand what that felt like. That feeling of the walls closing in and total and complete panic coming over you in waves!

This summer we went to Mexico and I got pulled under by some waves. I was very close to shore and I felt it happen, I told myself to stay calm and not breath and I was out in probably 20 seconds.  It was scary but not ‘never get back in the water’ scary.  It happened I moved on.

Last Sunday I decided that Nic and I were heading to Six Flags.  We have season passes and I really enjoy going.  We got her wheel chair ready, threw some fruit in her lunch box and off we went.  About 10 minutes into the travel (its about an hour drive)  I started to panic.  The What IFs took over. What if we had a flat tire, what if the world ended, you get the idea.  The panic was so bad, I wanted to pull over and stop. I wanted to turn around and go home.  All I could think about was how can I do this trip alone?!

This is what it’s like to have a child with a chronic illness.  You live in constant fear of the what ifs. And the ones that manifest are never very realistic (at least in my world) but the fear is very real.

I took several deep breaths and kept driving, however it caused me to realize that I don’t do things because of this fear.  A few years ago, I had planned on Nic and I taking a road trip and we didn’t go because I was going alone.  I said I had to work, or something but the truth is I didn’t want to risk traveling alone with her.

Now mind you I have traveled alone a MILLION times, I travel for work, I love to drive but when it comes to taking her, nope I won’t do it.  If I have her brother or another family member I am OK but if it’s just her and I the fear takes over.

I am learning to recognize this fear and to manage it, telling myself to breath helps.  I can’t pretend the risk isn’t there, for us it’s higher than most. I have seen this first hand, but not living isn’t an option and having a travel buddy isn’t always an option either. So for now I will work to make sure my fear doesn’t stop her from doing the things she loves.

A day in the life

I often write about the comparison of normal children vs those that have a chronic illness.  How about those that have a life threatening illness.  What about the kids who have cancer or something else that keeps them from doing the day to day.  This is often a comparison that I want to make between my kid and those that have cancer, etc.

But the thing is you can’t make that comparison.  You can’t compare a child who has a disease that could potentially kill them to a child who has something that has to be managed on a daily or even hourly basis.  If your child has cancer – I am truly sorry! You are simply making sure your child is going to live!  However, for us we have to process so much more!

Not only do we have to decide if our child is going to get up we have to decide when they do get up how much can they do.  Can they go to camp, outside to play or swimming?  This week Nicole has been going to Horseback Riding camp and volleyball camp.  She has managed to do both for 3 days out of 4.  This is a pretty good run considering she is exhausted when she gets home.

I couldn’t be more proud of this girl who pushes through every day to do what she loves.  She got rewarded yesterday by riding her favorite horse.  I am going to talk to her instructor about leasing in the next few days.  This will allow her to get on her horse at least 1x a week.  This is what she loves.  She doesn’t ride for any other reason than she simply loves it.

So for this chronically ill kid I am going to move mountains and make an already impossible schedule even more nuts to allow her to do the one thing that brings her more joy than anything else!

What it means to have POTS

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My Favorite POTSie got to be a part of something this week that meant she had to push herself every day.  She didn’t have to push to learn or do better, she had to push to get up and go at 9am when she is not really functional before 12pm.  She pushed herself to do something that she truly loves and excels at.

She went to theater camp! She got to play a role in a piece of  HighSchool Musical that was way outside her comfort zone and she did all of this while struggling with very high heart rates.

Today they did the ‘review’ of what they had learned and she had her POTS shirt on.  This brought tears to my eyes as I realized that even with a chronic illness she is still doing what she loves.  She is getting up and going when her body is screaming for her to go back to bed.

Today it was Nicole 1 POTS 0.

 

Where does the time go?

A friend posted today that her son is turning 6, I’ve watched this family struggle with this horrible disease that takes away a childhood and makes parents rethink their entire process.  This amazing child has so many fewer safes than Nicole but still his parents are focused on him just living his life.

This is also where we are with Nicole pushing her boundaries in a safe way all the time understanding that this will be her normal forever.  There will not be a time when she will sit in a restaurant and simply order off the menu – she will also either carry her food, or request very specific items to ensure she is safe.

I looked at her this past week and said she’d have to live in an apartment when she went to college in order to eat. We are thinking about how we send her to Spain for her Jr. Year of highschool.  Nicole is already creating a plan for her to go to college.  This is her life, and she gets to live it the way she wants.

I can’t believe we’ve been dealing with the FPIES dx since she was 4 and POTS since 10.  Many of our friends are simply going to a holding pattern with the FPIES.  No more food trials and focusing on the quality of life for these kids instead of pushing new foods on them.  This is where we are as well.  She doesn’t need food to make her life better she needs life to do that!

We will focus on the memories we are making and making sure that her life is lived to the fullest!