“Yes! 9 More Months To Live" Chapter 136

For the last two months I have had a little extra crackling in my chest due to the presence of mucus. Laura, of course, was all over it and was in touch with the ALS Team of doctors. We went and had blood drawn, chest X-rays taken, and my saliva tested to see if my arch-enemy pneumonia was back.  The one thing I have consistently fought with is pseudomonas (a bacterial infection) that grows in the lungs often because it’s the perfect environment for it. Because this bacteria is very resistant to drugs, you need to cultivate saliva to determine the correct drugs needed. We have been monitoring this consistently and I’ve continued to have low levels of it, but further intervention hasn't been necessary.

This time the test came back and showed elevated white blood counts, which could mean I had a fight ahead of me. I wasn’t scared, though. I have a great corner team and my coach Laura on my side. When the chest X-ray came back, I gave them a jab to the chest and they were clear. Just needed the culture and the bell 🛎️ to ring. Well when the results came back, they were negative for everything. Not a bit of pseudomonas. I kicked it’s ass so good last time that it didn’t come back for the trilogy. Even the doctor was surprised and said I was “strong 💪 like a 🐂 bull.”

However, we all knew I still had something going on and recently my oxygen levels have been dropping into the 80s at night when sleeping (normal oxygen levels are 97-99). I have been using oxygen to get through it. Well what’s wrong with that, you say? All of the football players do it. That’s true, but long term usage will make the muscles and lungs more dependent on the oxygen and that’s no bueno. 

Last week I was prescribed some antibiotics and I have felt better, but I still need oxygen at night. I’m hoping to ween off and that this is only a temporary reality. For now I will just prop my head up more.

Because of all of this, and because I have not recently checked my Revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R), I did retake the test. It came back as a 2 - which I have been sitting at for well over a year. But  wait there’s more. When I drill down into the test, it turns out that I am a 2 because I need “2 pillows or more to sleep.” I thought really pillows determine when I die? Save the geese I’ll sleep on the floor! Technically I only use 1 folded up pillow and slightly prop the head of my bed up.

SO AM I A 3? 

Have I been lying to you all? What do I do now?

A 3 is someone who has “Some difficulty sleeping at night due to shortness of breath; does not routinely use >2 pillows.”  I technically only use one pillow.

Why is this so important? To be honest, it doesn't change a damn thing, so I provided both answers and I am letting you decide. Drop me what you think in the comments.

Here’s another question for you. Two or three both say I have a 25% < or > chance to live 9 months, but I scored a 2 over a year ago, am I already DEAD?😱(Dun- dun-duuunnn.) Maybe I get to start my 9 months over? But if I take the test again next month do I add or subtract 1 month. I’M SO CONFUSED. 

Then I think what can I do with the next 9 months? I can write a sequel to my book. Become a grandpa. Celebrate 1 more birthday, Christmas, New Year’s, Dallas Cowboys Superbowl. I have a lot to look forward to.

I used to say my cup is always half full, but the truth is my cup fills over with love, faith, compassion, empathy, and much more. Regardless of your number on any scale, I pray your cup is always full. 

 

Love and Blessings 

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