Hope is a Journey….

Don’t Give Up

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,


Comments on: "Don’t Give Up" (6)

  1. Jean Shepherd said:

    Let me be the first to add a little water and fertilizer to the tiny seed so that it can germinate and grow slowly towards the light and that its roots are strong and its stalk is full of bright green chlorophyll and its flower is bright and fragrant. Please be sure that the flower is blooming before you transplant it to another pot.

    I hope that you find the head gardener in the morning … and if he doesn’t arrive, perhaps the head honcho in charge of what REALLY goes on in the garden can find the store with the knowledge of the right kind of fertilizer for your beautiful bloom. This weekend has been a mere cloud and, as Little Orphan Annie sang … “The sun will come out tomorrow!”

  2. And through it all,you help us along with you. Thank you. PS Love that picture of you and Ralph…..oh, and Will and Sasha’s also.

  3. Stefani you speak words so many of us want to say. This blog and song resinates in my soul and so many others who have chronic illness with no cure! Don’t GIVE UP ON ME, speaks to my soul and my physicians everywhere. I too, like you am a lucky one … I have a team that try’s very hard to help keep me going. Besides that’s why the call me Warrior Wendy! Blessing my dear friend … keep on keeping on~

  4. Melissa b said:

    Lots of love and hugs Stef, was a rough day here attitude wise, but thanks for the post! Hoping we both find a better day today! ❤

  5. Sending you love and hope. May you get your team and baseline back soon.

  6. Today is that brand new day and I’m sure that if the right doc doesn’t *show* up you will *call* up and/ or formulate “Plan B”contact which might mean being somewhere else where they have a doc which know at least as much as you do! I feel your frustration and hope you’ll have
    more encouraging news later today!!


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