Show Your Hope!

Living with a serious medical condition can be very complicated.

Too many people are too concerned with ‘saving face’ or ‘being strong’ outside the walls of their emotions.

Not only does it do them no good to deny struggles, pain, heartache – but it continues to teach those around us that showing our true feelings is something that is to be frowned upon or shameful.

Let’s face it folks, there’s an Elephant in EVERY Room…and it’s about time I shared my Elephant with you.

No matter how much I focus on all the GOOD in life (and there IS so much that is GOOD…actually incredible in life), I have an illness that can eventually take my life.  I say “CAN” because NOTHING in this life is set in stone…but it IS something that needs to be addressed.  Yes folks, this is MY Elephant…..

Life is definitely not the way I thought it would be…

And quite honestly – there are days that I am envious of those of you out there who go about their day with ease – without a care in the world, but that’s just human nature.

You see, there are so many things that I have to factor into each day…each hour…each moment that I never used to have to give a second thought.

For example, when I get up in the morning, I have to plan to be awake in bed for at least 20 minutes before I can sit up, and at least a half hour before I can stand…and MAYBE I can make it down the stairs without feeling like my chest is going to explode from the rapid changes in my blood pressure and heart rate.  If I choose to get out of bed like most ‘normal‘ people do (i.e. wake up, feet hit the floor and your day begins almost instantly), I would probably not make it very far….and that’s just GETTING UP!  I’ll spare you the details of what it takes to go through the rest of my day, but for sure, some days I wish it were easier.

Despite the challenges I face, I am determined to LIVE my life as fully and joyfully as I can.

I can honestly say that the change in my physical abilities over the past year and a half have been a challenge and it has taken me time to adjust to life the way it is now.

It is hard when my brain tells my body to do something and my body retaliates.

It hasn’t been easy, but I’m doing the best I can…I have to – I have a family that I am determined to be a functional part of….I need it,  and so do they.

For the past 5 months I have been tied to a life-line…a central line running 24/7 in order to keep my autonomic function (blood pressure, heart rate, blood sugar, heart function) optimal, and it has been really great to have some autonomic stability, but – as with all things that are good – there can be a lot of undesired fallout when you intervene medically.

Between a lot of sleepless nights due to pain in my arm (where the line is inserted) and the worry of sepsis, blood clots, and embolisms hanging over my head – I decided that I would take my chances and have the line pulled.

After much discussion with my physicians and my home care nurse, they reluctantly agreed to allow this – if only for a trial to see how I did. Fingers crossed that this works!

I’m hoping that there are alternative medications/ways in which to mitigate my issues.  It was a calculated risk that I took (having the line removed after it provided stability) – but I went for 34 years without a central line – I want to be sure that, before we put in a permanent port, that I absolutely can’t live without it.

You see, I am determined to have as much normalcy in our lives as possible…trust me when I say that normalcy does not really exist when you’re tethered to a 3 liter bag of fluids all day and night.  I can’t tell you how much of an inconvenience it is even though it provides me with the fluid support my body needs.

It has been 13 days since the line was pulled, and – I won’t lie to you – it has not been a fantastic 13 days (the last 2 days in particular have been extremely difficult)…

But, I am enjoying the simple things in life that I took for granted prior to having the line placed – like taking a shower without having to worry about having someone help me shimmy my shower cover up my arm (to protect the line from getting wet) and ask for help getting it off when I am done, sleeping without waking up tangled in my tubing, and best yet…moving freely during the day without lugging around an extra 8 or so pounds of weight in a backpack (which is cumbersome and difficult to do when you don’t have a lot of muscle strength).

I had a 24 hour blood pressure monitor and heart monitor last Friday – and, after pairing those results with all the testing I’ve had since September, the autonomic specialist said that I have Preload Failure. My dear friend Sarah explains it best, “Preload Failure stems from a problem with tone in the peripheral vessels. It causes a lower cardiac output leading to issues with tissue perfusion in the rest of the body.  It is like the inability to prime the pump – the heart.”  It’s amazing how torn you can feel when you find out that your symptoms have a name…but to know that your issue affects one of your most vital organs.

Today is day 1 of Midodrine (the doctor wanted me to try Florinef again, but I refused given the last time I tried it I had an adverse reaction to it)….so keep your fingers crossed that this will work as I’m not enjoying my current roller coaster of highs and lows.

I do apologize for my lack of updates, but – after my last extended stay in the hospital, I had to take a step back – not just from blogging, but also from all things internet (Facebook included).

Of course I understand and realize that the reality of my disease is not a pretty one, but this was probably the first time I had felt truly afraid and so out of control of my body.

It really put things into perspective when the doctors admitted that they had no real clue as to what was going on and they started talking to me about learning to accept the progression of disease rather than fight it…that just wasn’t a good enough approach for me, but it scared me that it seemed like they had given up.

AND it was even harder to talk about it (because it made it more real) and to see others I care for fighting for their lives, losing their lives, or struggling every time I went online.

I saw what 2 weeks of me being away from home and the kids and Ralph did to them and it tore me apart.  I saw how hard some of my family took it when the fallout of this latest exacerbation hit (when I couldn’t stand or walk on my own and when the doctor laid out what my body was going through)…it was almost too much for me to bear seeing the hope leave their eyes…and it was because of me.

I began to think about the future and my family – and what would happen if I lost my battle now…especially when my children needed me most.  It was heartbreaking. I don’t even think that words could adequately sum up the emotions that were coursing through me.

I was more focused on what it would do to everyone who was left behind in the wake of Mitochondrial Disease’s unforgiving wrath than I was my own fate, for I know that this earthly body is merely a shell and my true home is in Heaven where my body will be whole and suffering will not exist.

It’s hard to face reality when the cards are stacked against you and the ticking of the clock is growing louder and louder with every passing second.

Yet, even with this disease breathing heavily down my neck, I understand and embrace the fact that I can’t live my life waiting and wondering when my final moment will be – I have to live it like every moment is my final moment and that THAT moment HAS to matter.

With that thought in mind, we’ve made a few changes around here at the house – we’ve been making it a point to have nightly ‘family time’ and find ourselves enjoying a competitive game of Sorry or Uno on a regular basis as well.

There’s a lot more laughter and snuggling going on here. I’m also pretty excited about the fact that Spring and Summer (my favorite months) are just around the corner – we can do so much together outside once it’s warm enough for us all.

I had asked Will and Sasha where they would want to go if they had ONE wish – Will chose Myrtle Beach (and to see NASCAR in person – which I’m not sure how I’ll make that work…) and Sasha chose Disney near Halloween or Christmas.  We used to go to Myrtle Beach with my parents every year and Will enjoyed it so much….

Sasha really enjoyed Disney with all the magical enchantment….

SO…with a collective deep breath in, our family is also planning to go on 2 vacations over the next 9 months – it will require creative travel/lodging, creative medical planning, and lots of penny pinching, but I want GOOD times to shine over the tough times for everyone in our family.

You see, despite knowing the outcome this disease most often gives to those it affects, I also know that…..

I could wake up tomorrow and a meteor could fall out of the sky and crush me….and my disease wouldn’t have been the thing that ‘did me in.’

….So why not just go on with life and live it the best way I can – being kind, loving, helpful, genuine, forgiving, joyful, and God Driven.

I’ve had to have some tough conversations with people this year surrounding the topic of Death.  Many are uncomfortable talking about this with me, and I understand why, but let’s get real here folks…

whether we like it or not – whether we’re ready or not – Everyone dies….and I am no different.

When it is my time to go it will mean that my work here on earth (my purpose) is complete…even if *I* am not ready.

I know this post isn’t really the uplifting post that I would like it to be, but you know what?  That’s LIFE….and I plan on LIVING it….but I still do have to think about…and talk about (from time to time) the uncomfortable aspects.

When all is said and done…what gets me through every scary moment, every rough day, every sleepless night is the fact that I still hold on to HOPE that I will live to see many more beautiful mornings in which my children sneak into my bed and snuggle up next to me and give me precious gentle hugs…

I still hold on to HOPE that I will live to see many more moonlight walks on the beach with Ralph as we hold hands like the moment of ‘forever‘ is captured inside our grasp…

I still hold on to HOPE that this life has so much in store for me – that I have more lives to change, that I have more people to meet and change me, that I have more memories to make, that I have more love to give….

That I have more HOPE to share. 

After all, isn’t that was living is truly about?

So there you have it, you have met my Elephant and it’s definitely a doozy – but I am learning how to balance living my life alongside my elephant.

It’s a work in progress, but I believe it is absolutely possible.

Thanks for letting me get this out…share my TRUE thoughts and feelings.  I’m sorry if it made any of you uncomfortable to read this, but this is MY reality, MY Elephant, and MY life…take it or leave it.  😉

I promise, the next blog post is going to be full of some really great things…..but this post HAD to happen first.

Love and Light (and lots of HOPE),

Stefani