When you have POTS everything else becomes an ‘AND’ – for example you have a cold – well with POTS its like having a cold AND the flu, not feeling great its POTS AND being dizzy. Well having an injury isn’t any different and no matter how hard you try to remove the AND its still there.
Today we are in the world of AND – see the child is in pain – constant – and this isn’t her normal pain levels this is POTS AND pain. Then you add pain killers and benadryl and you get POTS AND. So we are down today – not even able to keep her eyes open. So today we are living in the world of AND.
This means qualifying the day – do you have choir? Do you know where you have to be tomorrow for the assembly? OK Good – then you can stay asleep – no then we need to figure out the AND.
Living with a chronic illness means you live in the world of AND
So in the continuing episode of what can happen now – we have a boot! Not the kind you get when you don’t pay your parking tickets – but the kind that goes on your foot when you do things like break bones or tear ligaments. Nicole has a potential LisFranc injury which is the ligament that essentially holds your foot together. She is in more pain than I can remember and we can’t take the boot off because it simply hurts too much.
We are scheduled for an MRI on Thursday to get a better idea of the injury and next steps. The easy way out is 6-8 weeks in the boot the hard way is surgery and 3-5 mths of recovery. This would probably mean no volleyball, horseback riding or musicals simply because she can’t put pressure on the foot.
For me – this means much more concern and worry!! I think this is harder because its not our normal stuff. I can deal with that – this is outside of that AND with POTS everything becomes much more difficult.
So here’s praying for the easy way out 🙂
Sometimes I think about what was before – before we got sick, before we knew what life would be like before…. Life has thrown my family alot of curve balls and for the most part I don’t regret those! I wear them like a badge of honor because that’s what they are. They are things that I have survived that some people would of crumbled under, but still I wonder about the before…
You see before we had POTS I didn’t think about my child in terms of a bucket. You see when you overfill a bucket the water spills out, but even if you don’t over fill it – to the very top – you still run the risk of it spilling out. So you fill it 3/4 of the way to ensure that nothing spills out. Nics bucket is very full, more than 3/4 – so adding anything to her bucket makes it spill. Before POTS I didn’t think about her life in terms of this, in terms of if she does this she can’t do that. Today I was thinking that it would be really cool if she could play Club Volleyball. She’s good enough to play, but this would overflow her bucket.
So we skip travel sports in order to ensure that she can get through a day. You see for a normal kid their bucket might be half full most days for a kid with POTS their bucket is 3/4 or more full on a normal day. So when you add extra stuff like sports, or music or theater their bucket fills up quick. In fact I would guess their bucket is smaller than the average teen.
Today I am thinking about the before – before this disease made me think about life in terms of if then statements. If she does this then she can’t do that. In terms of a before.
This week has been one where I wish to never repeat. While the shooting in Vegas did bring some questions to our family and discussions it was the armed suspect that really made me pause. Tuesday at 1pm there was a report of an armed gunman in our area – not just area like Plainfield but area like neighborhood. Schools were placed on lock down – kids were not allowed to go home and we were told to stay in our homes. I spent an entire day reading facebook, checking social media and news outlets for updates.
I realized that I spent an entire day living in total fear. I wouldn’t let the dogs out, I kept all doors locked and stayed on the 2nd floor of my home. It wasn’t until last night that I realized I wasn’t the only one. None of our neighbors were out, no-one driving around no-one walking home from a bus. We had essentially been placed into a situation that none of us every hoped to be in.
Now that its over – he was caught this morning I realized that this single person put several areas into this same fear. We all say that we cannot let fear rule us and that we have to stand above it, but when you have a chronic illness this isn’t always the case. You let fear rule your life simply because its the safest idea.
I am struggling today with what our next steps will be, but I know for sure that I will begin to think about the fear that dictates life sometimes and how do we react to it? My husband said it was a lot like having PTSD – he is very right and I’ve written about that before.
Just some food for thought..
I was talking with a mom of a friend of Nics who also has a chronic illness. We share stories because the girls are friends and in the same grade and at the same school so we can support each other when we have trouble with nurses, teachers and other issues.
What got me about our conversation is the idea that we blame ourselves for whats wrong with our kids. Like we did something wrong to cause these issues. We know that this isn’t the case but internally we question the choices we’ve made.
In her case the illness came out of the blue – literally! She was fine one minute and in the hospital the next. For us, it was more of a gradual thing that happened almost from birth. But still, you wonder if somehow you caused this.
We joke about ‘breaking’ Nicole because I craved Portillos when I was pregnant with her. Thankfully I had to drive out of my way to get there. But then I craved olives with Jon and malted milk balls with Steven and they are both fine (well in relative terms)
A friend posted on facebook today about our internal dialog that we have with ourselves and how we don’t think people know but they do! I think this plays into that internal conversation we have. We have to learn to say the words outloud! It helps! Talking with someone who understands can help work through the guilt as misplaced as it may be.
This is the only word I can use to describe Nic right now is tired! She’s had a rough couple of weeks with school starting and other activities still being in full swing but for some reason she seems more tired than normal. We continue to push her and she is riding, swinging (ALOT) and going to volleyball when she can. I worry that something else is going on or we’ve reached a point where her meds aren’t working as well as they should.
I know that fall is bad and we hit fall early in Illinois (its been in the 60’s this week) so that could be whats going on! It could also just be that she is back in school and schedules are tough. I am hoping we can get it figured out before she starts to fall really behind on her school.
I am struggling with what fall is going to look like for her! I know she wants to participate in the musical at both school and Brightside and she’s now riding 2 days a week but I know she simply can’t do all of it. I hate to make her choose but that maybe what it comes down to (she’ll choose the horses I promise).
Here’s praying that things start to look up, we’ve been dealing with almost constant headaches and I need to keep better track of those so I can report them to her docs.
There are days when I look at my amazing child and my heart breaks! She makes decisions that most kids don’t even have to think about. Yesterday, she got to be just a normal kid! She got to laugh, hang out and just be a kid! I love that she has friends that don’t care that she is in a wheel chair or that she brings her own lunch. These kids walked right next to her (or pushed her) and talked to her just like she was any other kid.
They didn’t question when we had to leave because she was exhausted! Nope they just said OK and said that they had fun! Yesterday my child laughed with friends, got to ride fun rides and just be a kid. Yesterday was a day that I will put in place in my heart and when we have to leave concerts early, skip events or not go because she’s tired then this will remind me that while we have to make tough choices she still gets to be a kid!
The photo on the right first day of first grade, the one on the left first day of 8th. The one unchanging thing is that smile and her attitude. I can’t believe that we are nearing the end of her education years. While there will be college and other stuff this is an end of an era. This was last year to buy ‘required’ school supplies, the last year I will have a child at Heritage Grove (after nearly 9 years) and the beginning of her stepping into adulthood.
Her school years have not been without challenges and I don’t see that changing anytime soon, what has changed is her ability to handle those challenges. At locker move in night we bought her a HGMS shirt and I told her what a great 1st day shirt. She told me that she wanted to wear her POTS shirt so people could know what she has. She is a fighter and she is going to do great things!
So here’s to an amazing 8th grade year! If you need me I’ll be crying under my desk! (And I thought last year was going to tough!)
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!