Show Your Hope!

Don’t Give Up
(to listen to the song, click here)

When life is at its hardest

When you find the path too rough

When you think you’ve hit your limit

When you think you’ve had enough

When people turn their backs on you

When you find you’re all alone

When fear engulfs your tired frame

When nothing’s set in stone

When day to day is unforgiving

When you’ve lost all that’s dear

When everything comes crashing down

When all you know is fear

When normal takes a different name

When your life turns on a dime

When you’re on your knees for mercy

When you’re begging for more time

When what remains is heartbreak

When there’s nothing in your cup

Don’t let go,

Don’t look back,

Don’t give in….

© Stefani Bush 2012

I used to think there was nothing worse than being told I had a disease that was progressive – that had no treatment and no cure.  I was wrong…..

There’s nothing worse than having your body be in crisis and those who are supposed to take care of you during this crisis (local hospital physicians) have no clue about your disease, don’t know your baseline, and insist that your symptoms are just ‘progression of your disease’ and they give up trying to fix the problem.

That’s what I’ve been dealing with that past few days.  At least during the first 7, I was blessed to have a physician who was compassionate and willing to speak to other physicians to try to mitigate the issue and correct it so I could get better and return home to my family.

Sadly, all good things must come to an end…

The physician that was so wonderful went off rotation Friday night…and a holiday weekend was ahead of me – which meant that all of my dedicated and amazing physicians on my “Team” would not be available for consult (something I had not anticipated).

A new physician stepped into the middle of my care

And decided he knew all there was to know about my disease (which I can assure you – he doesn’t – which is why he is at some local hospital and not a specialist in Cardiology, Autonomic Dysfunction, or Mitochondrial Disease)

And he doesn’t see the issue with having blood pressures that range from 90/50 to 147/98…and thinks that it’s acceptable to not be able to walk down a hallway or go up a flight of stairs.

He basically wiped his hands of me and said that there wasn’t anything he could do….which might be true, but he hasn’t TRIED anything and he isn’t TRYING to reach out to any of my specialists.

I can’t tell you how infuriating it is to be given up on…I can’t tell you how heartbreaking it is to let my children see me like this…I can’t tell you how frustrating it is to KNOW deep inside that SOMETHING is drastically wrong – and the only person you have at your disposal is completely and utterly useless.

It takes a lot to get me angry….but he accomplished it, and I surely let him know it.

It’s funny how a complete stranger can drive you to the edge – after he left my room this morning, I needed a little time to cool down…but once I did, I was able to refocus and get my priorities in order so I could tackle this problem head on.

I am grateful that Monday is upon us and I am hopeful that at least ONE of my physicians on my ‘Team’ is available so I can speak with them and formulate a game plan.  If I have a PLAN and there is a GOAL – I don’t care WHERE I am as long as we FIX this and I am STABLE.  I don’t need to be at my ‘baseline’ – all I am asking for is STABLE!  I want to be able to be home with my family – without fear of another crisis looming over my head.

Is that too much to ask????

The reality is that I’ve got things to do and this is a very large inconvenience.

I’ll admit, since this new doc came on, my spirits have been pretty low and I’ve felt pretty discouraged…

BUT…I am not going to let it get me down any longer.  Tomorrow is a new day and I have faith that it will be a better day…

So to all of you who are struggling….who are fighting….who are hoping that someday soon things will look up….

Don’t give up…..

Love and Light,

Stefani

Being in the hospital isn’t all it’s cracked up to be…

And anyone who has been inpatient for any length of time knows all too well how the countless monotonous minutes seem join forces together and try to throw mutiny on your sanity.

Often times, when the stay is short enough, a quick break from the outside chaos for most can be just an unexpected blip on the radar in which one is forced to stop and be taken care of despite the fact that the world goes on nonetheless.

For others, being in the hospital can be an exercise in survival (emotional) of the fittest.

I often equate my experiences in the hospital as a controlled experiment in psychological warfare.

You are placed in an environment that is foreign to your everyday comforts,

Held hostage often at the mercy of your unrelenting body and complete strangers,

Forced to follow rules that are not your own,

And – worst of all, isolated from the world outside…

All while trying to gain access to freedom so you can return to life as you once knew it.

Some of us handle this unexpected imprisonment really well…

While others struggle greatly…

The reality is that not everyone handles captivity well.

Being one of those individuals that does not handle captivity well, I have had to hone my own ‘Survival’ skills through trial and error….unfortunately with quite a bit of practice over the past year.

I’ve found that there are a few key things that can make or break Survival in captivity:

1.  Stay Connected:  Being able to have a cell phone, laptop, or tablet allows for you to utilize your support systems effectively and also minimize the boredom.

2. Get Creative: Often times, hours and days just seem to just blend into each other, the television entertainment is lacking, and the silence (in between your roommates delirious rantings) can be maddening.  The key is to keep your mind active and find unique ways to entertain yourself so your sanity remains intact.

3. Be Proactive: The reality is, even though you are in a place in which you are supposed to be taken care of – things happen, your ‘Captors’ (or your helpers – depends on how you view things!) aren’t mind readers, and each person has their own unique set of problems and medical needs and you just can’t expect them to know what could be happening to you from one moment to the next.

You MUST be your own advocate.  Not only will you feel better about your care while you’re bed bound, but you’ll also find that this communication can be critical at heading problems off at the pass.

4. Allow Emotion: Some people say that showing emotion is a sign of weakness.

I believe it’s quite the contrary.  As a society, we take pride in autonomy (being independent) and we are taught that there is an element of shame in not being able to handle all the things life throws at us….after all, we are supposed to be superheros, right?

I tried to buy into this philosophy but found that it couldn’t be further from the truth.

Yes, being independent is a wonderful thing, but we can’t be everything to everyone all the time.

We also are only human and by pretending that we can carry the weight of the world on our shoulders –

We are merely placing a facade around ourselves that will surely, over time, fall to pieces…

Just like we will by carrying on in such a manner.

5. Let It Be:  Let’s face it – sometimes things are our of our control.

Some will try as hard as they can to go against the grain of the way things are because it’s the only way they feel they can survive the moment.

They will rage and fight tooth and nail resenting every moment that isn’t how they want it.

Me, I tried that route and not only did it not get me anywhere…but I used up so much time and energy fighting against how things were.  I was trying to force them to be the way I had envisioned them to be.

You can’t put a square peg in a round hole…you just can’t.

Once I learned to look at the situation differently, I realized that I can still ‘fight’ my way through things, I can still strongly dislike and protest my situation AND still survive with my sanity intact.

I didn’t have to ‘give in’ – I just needed to embrace the fact that, life sometimes has other plans.  No matter how hard I try, I can’t change the fact that my body is failing – but I CAN make the best out of every moment and still find some peace in all of it.

6. Have some fun: Okay, so this is probably the one thing that many of you may not get – but honestly, it is the one thing that continues to keep me going when things are at their worst.  I may be grounded to a hospital bed holed up in a cold and sterile room surrounded by strangers that don’t often get what life is like for me – but I’ve found that trying to lighten things up a little and being able to laugh despite even the most frustrating moments has been one of the greatest factors that have allowed me to keep my spirits high and my hope intact.

7. Life Goes On: So you’re in a hospital bed, huh?

You know what???  Unfortunately, for everyone else…Life goes on…even if the world inside these 4 walls seems to stop, so why not do your best to continue to live with as much normalcy as possible?

When I am in the hospital, we don’t make a big deal out of it – for us (meaning my husband, kids, parents, and aunt who are with me daily on this journey), it’s just a part of life. Unfortunately, it’s something that has become more a part of our reality than I wish it was, but hey…that’s life…and it goes on.  This hospitalization I’ve felt mighty awful, but I’ve managed to have the kids up here each day so they can see me (they are old enough to make their own decisions and they would rather come to visit than have phone calls and wait until I am home).  While they are here we talk about school, homework, the favorite part of their day…we snuggle, watch movies together, play board games, play cards.  I can’t hide the fact from them that I am in the hospital and I don’t want to act like this place is a place to be feared – so we try to keep things as normal as possible.   Yes…I am in the hospital – but for them, the world needs to go on and they need to see that, even if I’m in here….it goes on for me too.   You know what?  I think it not only helps them, but it helps me to remember that, even though this is another day in the hospital, it’s still ANOTHER DAY and I am grateful for that and I should do my best to enjoy it as much as I can.

8. Reflect: Of course you have some time on your hands – so why not seize the opportunity to just reflect about all the wonderful things in your life.  Evaluate where you are, where you want to be, things you might want to improve, things that aren’t necessary.  Life often is surrounded by chaos and we get lost in the day to day monotony – utilize the downtime as time to regroup, reflect, and revitalize your priorities.

9. Rest:  You’ve got nothing stopping you from doing this!  This is, of course, the most obvious of all of the suggestions I have to offer – but it still needs to be said.  By the way….did you know how difficult it can be to accomplish this feat amidst the beeping of machines, the overhead speaker, the obnoxious roommate, the senile lady 4 doors down screaming for her nurse because she thinks it’s a more effective way to get her attention, the poking and prodding at all hours of the night, the early morning arrivals of your new nurse, your doctors, your housekeeper, your aide, and your food….it’s easier said than done….(resting).  😉

And….Most importantly of all…

10.  Have Hope:  Hope is a driving factor.  Hope gives us light even through the darkest nights.  Hope challenges us to get creative, to push harder, and to keep fighting even when that small inner voice screams for you to give up.  I’ll admit, I’ve had my fair share of occasions in which I am so frustrated, so angry, and feel so defeated that I struggle to find the purpose in all of the heartache…

But Hope whispers softly to my heart reminding me of all the beautiful moments that have come because of it, all the amazing memories I’ve had despite it, and all the beautiful things to come in my life if I just hang on to it (Hope).  So…..I’m hanging on for dear life…..and there’s no chance that I am letting go anytime soon!

Now I know my methods are unorthodox for many…but for those of you who find yourselves captive and are searching for some survival tips…I hope you take a few from me!  😉

Love and Light,

Stefani

PS…keep your fingers crossed that I get released  from my current captivity tomorrow!!!  😉

Greetings to you all from the last place on earth that I would want to be in….a hospital bed.

At least I made it 4 months between this hospitalization and my last one – which broke the old record of only being able to go 2 months between each hospitalization since Sept of 2010.

Ironically enough, last year, at this exact time, I was also hospitalized (for different reasons).

I was really hoping that 2012 would be a better year…

But so far, it has been more of the same.

I’d been having some really odd sensations in my chest (feeling a pressure build and then feeling like I was going to pass out) for a few days as well as my blood pressures and blood sugars were wildly swinging high to low – so I knew that something was coming (usually when my autonomic system goes on the fritz, I can almost be certain a crash of some sort is imminent).

Yesterday (Friday), I was heading to an appointment at Lowell General for an ultrasound to rule out a blood clot in my left arm.  The day started rough and I just knew that I wouldn’t be able to get myself to the appointment alone – my friend Sharla offered to take me to the appointment (and boy am I glad she did!).

The entire time we were waiting for the appointment, I increasingly felt worse and worse, and I was hoping that, once I laid on the stretcher for the ultrasound, I’d feel better.  After about a half hour of waiting, I suddenly just felt this overwhelming nausea, dizziness, and pressure in my chest. I vaguely remember the ultrasound tech asking me if I was okay and then getting a nurse…and the next thing I clearly remember was the ER and the doctor talking to me.

I didn’t pass out, but everything was a blur.

My friend Sharla said that I didn’t look very good and that there was quite a flurry of activity around me.  I just remember the incredible pressure in my chest and feeling like it was being crushed.

It took them about an hour to decide that I needed to be admitted – and then they hemmed and hawed as to whether or not I would stay local or be transferred to MGH.  We decided to try to manage this locally, and if things got worse, we’d transfer.

Poor Ralph was helping a family friend in Quincy, so he was unable to come and be with me until after he got home and got the kids up to bed….and I am SO incredibly thankful to my parents and Keith for taking care of Will and Sasha in a pinch (as always)…and for Sharla for staying with me for the entire day.

As the night went on, I began to feel somewhat better as long as I stayed mostly flat and didn’t move.  If I had long conversations with the nurse or doctor, my oxygen saturation would go down into the 80’s until I stopped talking.

My lab work was essentially normal (minus a very non specific marker for possible blood clots) and my chest x ray was normal.

They also did the ultrasound on my arm and ruled out the mass I have there as NOT being a clot (what it is will have to be determined at some other point).

I finally made it up to a room at about 6 p.m. and got settled with the nursing staff.  They’ve all been wonderful…

But I must admit, I’m a pretty self sufficient patient – they’ve allowed me to draw my own labs (off my PICC line – but they have to ‘supervise’), hook up my own fluids (they’ve allowed me to use my own pump/fluids), and I don’t really ask for much.

I even got an unexpected visit from the Chase and Kurland family, which I really needed – though I probably need a shower more! 😉

Ralph came with a bunch of goodies for me and some clothes to change into and he and I just melted into each other. It was so nice to be able to wrap my arms around him.

My night didn’t go so fantastic – every time I got up to go to the bathroom, the incredible pressure returned and my heart rate would skyrocket…and then the intense nausea set in.  I don’t think my body knew what to do with itself.

My night nurse was fantastic – and I finally settled in to sleep (shrouded in tons of blankets because, apparently – despite the complaints of others saying it was hot – I was intensely cold.

I slept fairly well through the night (waking up a few times – but to be expected in a hospital) and woke this morning to a request for me to give more blood…and then I had to switch fluid bags, the aide came in for vitals, and finally the doctor arrived – I think it would have been impossible to go back to sleep at that point.

The doctor was very kind and seemed to understand Mito pretty well. I thought for sure that he was going to tell me I could go home, but he said that I might be here for a while.  Sigh. Well, at least I’m close to home, right?

Cardiology just came by – I’ll be going down for an echocardiogram and some other monitoring tomorrow and we’re going to increase my fluids. There was some talk about somehow monitoring my pulmonary pressures (but I surely am not allowing them to do a line in my neck to do so – at least not here!) and maybe talk of starting some medication to help mitigate the preload insufficiency that I have…but he isn’t wild about starting it right now with so many things going wrong in my body right now.

He feels that either I am really sensitive to the small pericardial effusion I have OR that the preload issue is exacerbating things – but he also agrees that I am definitely having some sort of “Mito” issue – whether it’s primary or a secondary response to something else going on…that’s to be seen.  Honestly, I don’t think that anyone really knows what is going on for sure, but they are doing their best to understand it and treat it…and they are listening.

I got to spend some time with Ralph and my munchkins – which was really nice.  It’s not easy to have a mommy in the hospital (and it’s not easy to be a mommy in the hospital).  I want them to know that, even when things aren’t at their best, we can still make the best of it.

And I was even more blessed to have Candy, Sarah, Jon, and Colleen, Rob and Linda stop by to cheer me up…unfortunately, I started to run a fever, so now they are wondering if all my issues are stemming from possible sepsis or some other type of infection.  We drew blood cultures and are watching the fever closely.

We are all hoping that this is not the case….fingers crossed. I’m currently sitting at 99.6 with Tylenol and my head is pounding!

And, it probably doesn’t help that my room is on the warm side.  So, between that and the fever, I feel like I am melting.

To be honest, I’m quite frustrated with the fact that my body is not cooperating – but I am not going to let it get me down, I’m going to use it to drive me harder into getting things to a place where I can count on stability.  I’m going to be positive ….

I’ll admit, I am pretty upset because I had planned to visit with friends last night and I had tickets to go see Liz Longley and Air Traffic Controller tonight.  😦

Okay…enough of my babble….we now return to your regularly scheduled programming….

Next post, I hope to be able to not only say that I am out of the hospital, but I have some pretty exciting news that I can hopefully share with you all!!!

Love and Light,

Stefani