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 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 there’s nothing in your cup
Don’t let go,
Don’t look back,
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,