What is POTS?

Most of the time I write about our day to day struggles with having a chronic illness. I do this here because I try to avoid putting to much of my personal life on my facebook page.  However, after this weekend I felt that it might be important to share.  Nicole has POTS (I know big surprise right??!!) OK all sarcasm aside, POTS isn’t just an acronym for a disease that noone has ever heard of, it is our day to day reality.  Some days that reality is like everyone else’s however this weekend it became our nightmare.

This weekend we were scheduled to travel to Wisconsin Dells for our annual winter student conference.  Tony and I take Friday and Monday off and travel to the Kalahari resort where we work for 3 days straight to ensure 1350 students have the most amazing experience possible.  For a kid with a chronic illness this can either be really fun or really bad.

Before we go further let’s remind ourselves what POTS is: (From WebMD)

POTS is a fast heart rate (tachycardia) that starts after you stand up. This can suddenly happen as long as 10 minutes after you stand. With POTS, the body does not control blood pressure or heart rate as it should after you stand up. So for a brief time, you may not get enough blood to your brain. This can make you feel dizzy and lightheaded. You might faint. Sitting or lying down helps you feel better. For many people with POTS, fatigue and other symptoms may make it hard to keep up with daily living.

Read the last 2 lines again!  (OK now again) POTS doesn’t make Nic tired, it makes her unable to function. She’s not just tired, or lazy, she is incapable of getting out of bed. Sunday, when her friends were playing dodgeball, swimming and riding rides she was in bed. Not sleeping, but almost unconscious.  Her heart rate and blood pressure were very low, making even sitting up impossible.

I am not writing this to make you feel bad for her or for us, but to explain when we say this is bad, we mean BAD not she’s just a little tired.  Take your most tired moment and times it times 1000 and then add 1million and you might get close to what she feels.

Having POTS means that you can do 1 day but not 2, that you can do 1 thing but no more.  It means having to balance everything that you do, and even then it means missing out.  She didn’t get to attend any of the conference on day 2 because she went day 1.

I know what you are thinking, not fair! I agree!!  However, I don’t write this because I want you to feel bad for us, but simply to provide an understanding of what she deals with and to let you know that it’s OK to ask how she’s feeling.  We appreciate that, it’s also OK to admit that you don’t understand, that this disease doesn’t make sense (it doesn’t to us either) and that it’s hard to fathom a 13yo kid who will sleep for 23 hours in 1 day.

If you are curious, please ask questions, do research and get information!  If you know someone dealing with this crazy disease, let me know we love to expand our circles!!

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Its BLAST Weekend

The last 30 days have been a trip – not necessarily a good one either!  We started with Elf Musical at school, moved into a Kidney infection which required an ER Visit and then ended with 9 days in Florida.  We came back and rested and thankfully Nicole was able to return to school on Monday.  Now in 2 days we head to Wisconsin Dells for a weekend of God, Water and Music!  AND we are taking Ian with us so Nicole is OVER THE MOON to have her BFF going with us!

Having a kid with a chronic illness makes everything else way more complicated.  Take the normal bladder infection that in a kid with POTS ends up being a kidney infection.  It also means that you do Disney alot different than most families.  We managed 6 hours each trip and made sure we didn’t go 2 days in a row!  I think the noise was overwhelming, I know the people were hard to handle!!

Even with all of that we had an amazing trip and saw some very cool stuff AND met some awesome people!  We stopped in Knoxville on the way home and while we were waiting on our dinner we met a father and son who are from Naperville and knew more about the area than we did!!

We always know that traveling with our awesome kid requires adjustments and understanding and this trip will be no different.  I am hoping that we will have the same room setup we had last year where we have our own bedroom with a door. That way she can sleep on the floor as long as needed.  Last year she simply didn’t go to the morning session which ensured she slept and rested as needed.  We’ll be ready to adjust and make sure she has everything she needs!

After that?  Well mom is headed to Vegas with a friend and her son for the nascar race!  I have NEVER done something like this before so I am super excited!  Not sure what we have planned for after that, I know that I am heading to Minnesota in late spring/early summer and we are trying to head to St. Louis for a long Six Flags weekend!!

Can’t wait to see what else 2018 has in store for us!!!

When you hear hoof beats think

Zebras right isn’t that what everyone thinks?  Nope most docs say if you hear hoof beats think horses!  Nope my kid you think zebras and not just the any ole zebra a pink one because we are unique!

The last few days Nic has been down, tired not feeling great. Of course she’s down, she had a week of musical rehearsal and 6 performances.  So I just figured that is what this was, until Tuesday night when she was crying in pain. Lower back pain, left side abdomial pain.  Not her appendix (that’s on the other side) So I figured this is POTS just rearing it’s ugly head. She’s had to much codeine and she’s having a reaction.

Umm No, my kid has a kidney infection. Yup not just a normal ole garden variety UTI but a kidney infection! So off we go to Urgent care because mom still thinks this is a UTI and she needs antibiotics.  After I give the doc her symptoms, she looks at me and says “we can’t treat you”…. you have to go to the ER… what? You can’t treat this here? Why do we have to go to the ER?  Well because the back pain and abdominal pain and fever she has a kidney infection and we need fluids and IV Antibiotics.

So now we’ve missed the entire last week of school and there are missing assignments and emails to be sent to tell the school that they are going to have to do something to ensure she passes the quarter and I am hoping that by tomorrow she’s well enough to get in the car to drive to florida.

So if you need me I’ll be the one with the pink zebra driving in the car to Florida – oh and I’ll probably stop and get a martini which will mean the pink zebra might be driving 🙂

Merry Christmas Everyone

Marathons

For most 13yo kids going from activity to activity isn’t a big deal.  They do just fine coming from home school and then going back to another thing later in the day. For a kid with POTS this isn’t always easy and sometimes its not possible.  When your normal child has back to back activities you might make sure that they have the right foods to eat or good things to drink. You might even make them a smoothie to ensure that they have the power they need to get through the day.

For us, this doesn’t work, for us it means balancing one activity over another. It might mean doing one thing and not another.  For us it will mean resting during the day, even taking a nap at school. It means that for the next 2 days we’ll push as hard as we can and then for the next 2 after it will mean doing nothing. Not because she’s lazy but because she simply isn’t capable of getting out of bed.  She will sleep and I won’t be able to wake her but it will be worth it.  She will get to do the one of the things she loves, perform on the stage with her friends.

But for right now she’s resting, I’ll get her up in a bit and give her some food and milk, I might even make her that smoothie!  And then we’ll do it again tomorrow and I will get to watch my child do something that she loves.

Today is the day

Today is the day – the pain is less but never gone. It seems strange that it was over 30 years ago that you left this life, but yet I still feel you so close by.  It seems strange that I have seen my daughter grow 1 year older than my mom got to see me.  I used to not want to do Christmas prior to today. I always felt that I had to get through today and then I could celebrate!  This year has been different, maybe it’s me maybe it’s that my kids are older I am not really sure, but I do know that today I will remember the fun, the memories and the happiness.

I will remember the woman who brought me into this world and who left it way too soon! She was  a single mom for most of my life and for all of my brothers.  But that never stopped her from making life fun and filled with excitement.  From our camper trips listening to Merle Haggard or driving around in the malibu and then our Riveria there was always something.

Memories such as the giant pink stuffed snake (not sure it was all that big but it seemed big to me) to her typing our gift cards for Christmas so we wouldn’t know it was her (did she think we couldn’t hear the type writer??) To playing school in the basement.

I still see her in my everyday life, in my daughters face, in my hands and on my freckles.  I know that God had a bigger plan for both of us but there are days that I wonder why. I guess I’ll get to ask Him when I get there.  Until then, mom I love you so very much.  Know that you live on in all of my children and in my heart.  Know that while you are gone you are not forgotten and I am so thankful for the person you made me today.

I hate POTS

No seriously I hate this disease! I hate the disease that robs my daughter of the things she loves to do!  5 weeks into a bone bruise on our foot and we are still down and down hard!  Yesterday after a rush doc visit to learn that we aren’t sure why the pain is so bad and not being able to stand for more than a few minutes today its more of the same.  Heart rates going from the 60’s to the 100’s upon standing and BPs that are going up mean that again she is still in bed.

This disease that robs kids of their lives, their fun and just simply their childhood.  Today is the second day of dress rehearsal for Elf Jr.  and I am hoping and praying that she’ll make it. Not sure what happens if she doesn’t! If nothing else I’ll take her and stay with her to make sure she’s OK.  I would give anything to have her be better to have this not be our normal.  In fact I’d give anything to go back to what our normal was!

I just want her to at least to be up and walking around instead of lying in bed unable to stand.

How not to be ‘that’ mom

We all know those parents – the ones who feel their delicate flower should be given every opportunity simply because, well they are awesome!  I had a conversation yesterday with a girl who has played volleyball with us for many seasons.  She decided she wanted to play on our club team, now she’s a freshman and joining a club team is really hard at this point.  However, she set her mind to it and worked so hard. She showed up at every open gym, every extra practice and took every opportunity to get private lessons.  She is on our 14u club team! She did it, mom and dad didn’t have anything to do with it besides getting her to the places she WANTED to be!

I’ve known her family for a few years now and her dad always said ‘she’ll make the team IF She makes the team’ he never once said she deserves this give her a spot.

Nicole tried out for her musical and she made the ensemble and I so want to jump in and yell at the unfairness of this.  Don’t they know my delicate flower is way more awesome than this?? Doesn’t she deserve to be the lead?? Actually no she doesn’t she deserves to have a safe existence and she deserves to have parents who love her and siblings who love her but still tease her. She deserves family that she can be with and enjoy life with. She does NOT deserve the lead in the play.

Dear parents – news flash your child does NOT deserve to be the best when they are not the best. Does this cause you pain? Probably, but guess what you didn’t get to be the best in everything and your parents did not call the school/principal/teacher/coach/leader and tell them that you should be the lead!

So I’ll be breathing and reminding myself that if my child wants something she has to work for it… Novel idea I know!!

What are you here for?

OK So I totally stole this from Jen Hatmaker 🙂 She’s my hero!

So what are you here for?  I am here for the joy on my child’s face when she gets to sit with her BFF while we learn about the joys of her going to high school. I am here for the 220 kids who play volleyball with me each and every week as they learn and grow and get to do things they didn’t think were possible!

I am here for the kids who help the said 220 kids reach those goals who seek me out to ask if they can help and then watching them teach the other kids how to pass and serve.  The looks on those kids faces is like they have seen a star.  They are so excited that one of the club players is taking time with them!

I am here for my roller coaster/racing buddy! (who happens to be the little brother of my daughters best friend) I love listening to him describe different race tracks and why one is better than the other.  I love that he answers my really dumb questions about why one track is better than another.  I love that he will ride all the crazy spinny rides with me while his brother and my daughter ride things like Goliath (AKA seriously who rides that!)

I am here for my puppy’s and those faces! I mean seriously – does God work really hard to make these things so freakin cute?

So what are you here for?  What makes your world go round and what are you just so thankful for??

Minor bumps major flairs

In the mode of 2 steps forward and 1 step back – we got good news from the MRI – no broken bones or torn ligaments.  With the LisFranc injuries even a minor injury can be serious – add to that serious bone bruises (which I hadn’t even heard of before) makes for serious pain.

So now we are still on codeine and that makes functioning really difficult. So now we are day 3 of just being down.  I wish she could just catch a break – we were told no horse backriding and no volleyball – no weight bearing for another 2 weeks.  I can’t believe I am saying this but I would give anything to be back to our level of normal.  No school on monday’s making the rest of the week – swinging and sleeping!!

I know in a year we’ll look back on this and realize it was all just a distant memory but right now it feels like a nightmare!  POTS kids don’t take bumps in the road like other kids and minor bumps mean major flairs.  We just need to get over this hill and hopefully things will get better.  Until then we’ll work on the just maintaining the day to day….