Hope is a Journey….

Archive for January, 2013

But You Don’t Look Sick!

Ahhhh…..the dreaded 5 words that anyone with a serious or chronic illness hates to hear:  “But You Don’t Look Sick!

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Sad but true, perception often is reality and we judge reality by the way things ‘look‘ – and, until you’ve had to LIVE with a chronic or serious illness….this may be how you operate.

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To most, sick looks like this:

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And healthy looks like this:

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And, often…this is the case.

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But what about those who LIVE with illnesses that are invisible and have learned to cope with most of the day to day struggles to the point of making ‘sick’ look ‘healthy’?

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What about those who have silent battles raging on inside of them at a level that the naked eye can not behold?

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What about those who are great pretenders…who live their life putting on a brave face, a shining smile, and never let the world know how tough it really is inside their skin?

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Yes…there are those who are indeed living with serious illness who look amazing….

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Thanks to constant medical interventions,

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Numerous appointments,

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Therapies,

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And an arsenal of heavy duty medications.

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 2 years ago I was sitting in the ER at Mass General Hospital having some serious cardiac issues – they were overflowing with patients, there weren’t enough beds and they had run out of cardiac monitors.  The nurse (trying to be reassuring to me) said that she had to still dig up a cardiac monitor for me and 2 other patients…but that she wasn’t too concerned about me – because I didn’t ‘look sick.

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I asked her exactly what ‘sick‘ is supposed to look like and told her I’d try to meet her expectations next time she walked by.  I then explained to her that my ‘sick‘ is at a cellular level, and – unless she had some secret magical microscope built into her eyes, she had no idea how ‘sick‘ I was.

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I then made a phone call to my metabolic specialist – who called down to the ER and explained my situation to them…and I was transferred up to a room within an hour.  Indeed, I was SICK, fancy that.

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I can’t even tell you how many times I’ve been told, “You look so young and healthy” and my response is always, “Tell that to my Mitochondria.

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When I am out with Ralph and my two children, people always say, “They look so healthy!

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And, you know what….they are right.

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Do you know what it takes to keep my kids ‘looking healthy?

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Appointments,

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Therapy,

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Daily Medications,

Will's Daily Medication

Will’s Daily Medication

Sasha's Daily Medication

Sasha’s Daily Medication

One Day of Meds for Both Kids

One Day of Meds for Both Kids

Weekly Infusions,

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Assistive Devices,

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Modified Activities,

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Extra Rest,

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Close Monitoring,

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And…the newest addition to our list…removal from school to prevent exposure to illness as much as possible.

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I’ll be honest, sometimes – no matter what you do – no matter how hard you try…there are times when we  ‘look sick’ and there’s no mistaking it.

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But, remember to try not to judge a book by its cover…

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Because contained within the pages of that book can be a lifetime of struggle, battle, procedures, failures, and a medical journey that you may never have anticipated.

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Love and Light,

Stefani

Whatever it takes

Christmas Break should have been a fun and carefree time for our family, instead – it was full of fevers, coughing, breathing treatments, antibiotics, seizures, and sleepless nights.

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Just before Christmas, Ralph started coming down with a head cold – which progressed into a chest cold.  Christmas Day, Sasha started with sneezing nonstop, and it progressed to coughing and fever.

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We immediately started breathing treatments and hoped that it would be short lived.

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Will became sick a few days after (and so did I), but thankfully, for both Will and I – it wasn’t as severe as Ralph and Sasha’s infection. Sadly, for Sasha, it persisted through the new year, despite beginning a 21 day heavy duty course of Augmentin.

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By the time we hit January 2nd, Sasha was still a train wreck spiking random fevers and definitely not playing by any rules.  Sasha was really struggling with fatigue and weakness.

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Every system seemed to be impacted….we saw more seizures, higher heart rates, lower blood pressures…and she just was wiped.

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We had been in contact with the immunologist throughout all of it via email, but it was time to give him a call.  It soon became clear that we were at a crossroads.  Both kids were having a rough go at it, but Sasha was having a particularly difficult time handling it.

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Even when she was smiling, it was perfectly clear that her body was not handling the stress of the illness well.

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If this was how they responded to a cold, imagine how they might respond to what is being donned, ‘The Worst Flu in 10 Years.”

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NOPEI don’t even want to go there.

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The decision was made to pull both kids from school indefinitely given how severe the flu season was shaping up to be along with the fact that there were quite a few other nasty bugs going around. The immunologist also decided to increase Sasha’s weekly infusion dose to see if that helped also.

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The next step in the process was for him to write a letter to the school stating they would be on ‘Homebound’ status until further notice and I needed to call the school and let them know.  I spoke to the Principal, and he was a bit surprised by the development, but was already thinking out loud about what we could do and how fast they hoped to get things rolling.  In the meantime, we’d continue weekly tutoring (1 hour a week) until they could hire a teacher for both kids.  As much as we all wanted it to happen overnight for them, these things take time – and we understood that.

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In some ways, it was a good thing because Sasha still wasn’t feeling up to par and, honestly, both kids had a lot of appointments they needed to go to – so they were going to miss a good deal of school anyway.

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Within a week, we had a plan, increased tutoring hours to 2 hours a week per kid, and had a successful mediation (regarding Sasha) with a definitive plan to keep her on a better track once she does go back to school.  As of this post,yesterday was the first day with the new teacher here at the house.  We really enjoyed our tutor that we had, but due to time constraints and the effort to keep things as ‘near school-like‘ as possible – a new teacher needed to be hired.  I think she will work out well with the kids!  She will be here 20 hours a week (10 per kiddo/2 hours each kid per day).

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You never realize just how much you don’t appreciate simple freedoms you have until you are faced with a situation like this.

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To take a risk and ‘LIVE‘ your life without consideration for fallout if the worst case scenario occurs.

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To play it safe, follow doctor’s recommendations, and know that the ‘inconvenience‘ might be what saves you from hospitalizations, set backs, or worse…..

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To some, this sounds like ‘no big deal‘ – but it’s so much more than just pulling them from school….

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It’s losing social interaction…

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It’s a complete change in schedule…

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It’s finding a quiet place for 4 hours a day that both kids can work (we live in a house with 8 people total – 6 of which are home all day almost every day)…

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It’s a harsh brush with reality for Will and Sasha – who are now old enough to understand that things are different for them than for their peers…

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It’s about the entire mentality of our everyone in our home having to change.  You see, it’s not just Will and Sasha who are struggling with sickness in our home, and everything that one person does can have an impact on every other person in the house.  We have to keep everyone as well as possible.

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It’s about NOT going out into the community unless there is a need (like going to a meeting, work, appointments, food shopping/pharmacy trips).  Doesn’t sound like a big deal until you really think about it.

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We always keep our exposure to a minimum during this time of year, but this year, it’s incredibly important for us to do so.  We are currently in the process of moving Will and Sasha’s Physical and Occupational therapy to the home setting to also limit exposure.

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It’s about taking extra precautions when they DO have to go out in the community.

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It’s limiting who comes INTO our home.  The reality is that you often are sick and contagious before you even know you are.  As much as we want to have social interactions with others – right now, it’s best to limit the amount of people we are exposed to.  The few we DO allow into the home are often those who are just as confined as we are and 99.99% of the time they are adults, so the chance of exposure is much smaller.  Honestly, not allowing kids into our house until further notice is a TOUGH limit to set, but it’s one we feel is an important limit to set.

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It’s about getting creative with our situation and coming up with ideas to make things seem less drastic….like doing ‘Skype Play Dates’ and ‘Face time’ with school mates.

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If we’re going to do it, we’re going to do it right, even if it’s not easy…and boring…and a hassle…even if it puts a damper on our ‘social life‘ – it’s worth it.

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To us, keeping Will and Sasha as healthy as possible (and the health of everyone else living in our home – most of which are immune compromised) is the only thing that matters.

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Some may think it’s ‘excessive‘ – but, our physicians are all on the same page and we are on that page with them.  Right now, this is what is best for the children.   To put it bluntly, the only opinions that matter when it comes to the health of our children are those of the doctors who are treating our children and our own.

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With that being said, we understand and accept the fact that we will not be able to eliminate ALL exposure.  Some aspects of life DO have to go on.  My mom, Ralph and my niece all have to work.  I have meetings that I am required to attend as an elected and appointed representative in town.  We all have appointments with physicians in Boston that are NOT optional.  Sasha and Will’s teacher needs to come every day so they can learn.  Physical and Occupational Therapy need to continue.  We have to go to the food store and the pharmacy for necessities.  Life. Goes. On.

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Yep, you heard me:  Life. Goes. On…..and so do we – one day at a time, one hour at a time, one second a time.  Ralph and I realize that we have the power to make this ‘Lockdown’ a positive OR a negative time in the lives of Will and Sasha (and everyone else who lives here).  We are choosing to look at all the good that can come from this…..so here’s a few just things we are focusing on to get the ball rolling in the right direction…

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We have more opportunities to make beautiful memories.

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We have more time to play games.

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We have less time apart.

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We have new things to learn about each other.
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We have old favorite past-times that we get to revisit.

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We have the push we needed to get the basement addition started (and finished) so Will and Sasha can have a quiet place to learn and a room that is ‘just for them.’

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We have to slow down.

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We have limitations….yes….BUT also new possibilities.

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And, most importantly – we can revel in the fact that, no matter how much ‘freedom‘ gets taken away from us because of our disease processes….as long as we have each other, NOTHING else matters.

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At the end of the day, when Ralph and I kiss the kids goodnight…

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We can put our heads on our pillows and know that, no matter what happens….we have done and will continue to do everything in our power to keep them healthy, safe, and aware of how deeply loved they are – and we can take comfort in the knowledge that they know that we will do whatever it takes because of our love for them.

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Love and Light,

Stefani

Happy New Year (Better Late Than Never)

(Written December 31st into January 1st – but I forgot to post it in all the chaos!)

As one year ends and another year is waiting on the horizon, many of us find ourselves reflecting, remembering, and recalling the things that filled our lives in this past year…and then make promises and resolutions that are well intentioned but usually end up falling short of coming to fruition.  Seriously, what is so magical about January 1st?  What is it about this day that makes us want to change or believe that all our old ways will suddenly cease to exist because we left it behind along with December 31st?

As I sit here in the Intermediate Cardiac Care Unit ringing in the New Year with my dad, there’s a piece of me that desperately clings to the idea that January 1st instantly resets all of the negative things that have happened in the past 365 days….but the reality is that no matter how many New Year’s Days come and go, nothing will erase the days that have come to pass and no one single day will reset the course of my future.

You see, while this past year (and others) has brought great struggle, heartache, and uncertainty…there has also been incredible joy, promise, and blessing that has blossomed from the seeds of our hardest times.

That being said, I still take the time to reflect upon our journey throughout each year – the highs and lows…and this year is no different.

2012 was a year of flux for our family.

January started out on a real high note (insert sarcasm) with a 2 week hospital stay – probably one of the more scarier ones for me as it involved my heart, high blood pressures (I usually run quite low), and neurocardiogenic crisis.  To sum it up in a little nutshell:  Hell.  I had several more hospitalizations throughout the year…about 8 or 9 this year.  I can say, I definitely spent more time than I cared to in the hospital this past year….

I pulled papers to run for Town Meeting Rep….and won a seat representing my precinct AND supported some friends with their campaign for election and re-election:

I got to appear on the Steve Katsos Show (If you haven’t heard of him, you HAVE to check him out!!!!!)

Got to enjoy some of our favorite music (Casting Crowns, Matthew West, Air Traffic Controller)

Went to Washington DC for the Immune Deficiency Foundation with Ralph

Held some Blood Drives. Fundraisers, and a Patient Education Meeting…

Went on a Surprise Vacation to Myrtle Beach to fulfill one of Will’s ‘dreams’

Went as a family to the Hole in the Wall Gang Camp

Had some awesome times with friends….

Shared some amazing moments with family…

Celebrated Will’s 9th Birthday

Went to Washington, D.C. to Capitol Hill and the UMDF’s Patient Education Meeting

Did some home renovations

Celebrated birthdays…..

Dabbled in photography…

Had some rough times with the kids….

Finally Celebrated Sasha’s 7th Birthday…..(the first party got canceled because my heart decided to take a vacation which ended up resulting in a ride from the paramedics to LGH and a transfer to MGH).

Was recognized was one of the Top 50 Women in the Greater Lowell Area from the Mill Era til present

Got to surprise Sasha by making her dream come true – she wanted to see Disney at Halloween

Celebrated Veteran’s Day

Remembered those who lost in tragedy….

Got to help a family in need with one of my dear friends, Kurt…and learned a lot about faith and humble love

Started getting ready to record my new album….