Tuesday, August 18, 2015

My Titanic

I don't shy away from being open and honest about my mental issues. In fact, I often discuss my issues with depression and anxietyRecently, I’ve been confronting another emotional stressor, that of envy.


I feel as if I'm trapped on the Titanic. Half of the ship is being rescued while my half wonders if we are doomed. In this case, people aren't being rescued based on wealth or social status, rather their survival depends on their genotype.

I feel like I'm never going to get off this boat.

Over the last 12 to 18 months, two major pharmaceutical breakthroughs have helped more than 50% of the CF population improve their lung function. The new drugs, Kalydeco and Orkambi, are not effective for the type of CF I have


While people like me are happy for those who are being treated, we are disappointed that we are not candidates for either of these drugs. Knowing this makes me feel as if I’m trapped with that disappointed CF population on a sinking ship. Emotionally it seems so unfair to read discussions on social networks like Facebook dedicated to talking about how patients' lives are so much better after taking these miracle drugs. I feel so selfish for revealing my envy.

It haunts me that my "breakthrough drug" may never exist.

I'm not fighting any less to beat this disease. I spend most hours of the day and night doing treatments, running, working out and doing whatever it takes to stay strong with cystic fibrosis. Yet, there is a part of me that is envious of those who take these new drugs and get to feel so much better. I'm sure that one day my genotype will have a breakthrough treatment. I know there are several companies working on one,and the previous FDA approvals only add momentum for future successes. Still, it is difficult to wait and wonder. 


Neither new drug is a cure, but then not all rescue boats are guaranteed to reach the mainland safely. Still, like the drugs, they offer hope. I worry that by the time the right drug is available for memy ship will have already sailed or worse, sunk.


Still, this wouldn't be a post from me without a positive spin. I may have already received my first "miracle" drug 9 1/2 years agoand then another 2 1/2 years later. I'm referring to the birth of my children. 


Avery and Ethan have changed my life. My health is no longer just about me. It's about them too. I want to keep getting stronger so that I can see all of the milestones in their lives. They have changed my life more than any pill could. I think that perhaps each of us has received a miracle drug some time in our lives but might not have recognized it as such because it wasn't something we had to swallow or inhale.

These miracle "drugs" got me to 40!

And they will get me even further.

We each need to find our miracle treatment. It may just be looking us right in the face. 

In my case, that couldn't be more true.

Live your dreams & love your life.


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