“I Needed A CT Scan, Do You?” Chapter 89

You may already know from reading some of my previous posts that regular bowel issues are something PALS consistently have to deal with. I feel like I am on a ship with a female at the wheel. I am either full stop or full steam ahead - she can’t decide. All I want is a smooooth ride.

Laura called the doctor because I'm often going more than five days with GOING. We’ve tried to attack it from top to bottom, so now we had to schedule an appointment for a CT scan and visit with the Gastrointestinal doctor to see if I'm dealing with a blockage.

I have to tell you I HATE MRI’s... ok, maybe that is a little strong. Actually, no. It's true - I genuinely HATE them, In fact, the last time I had an MRI I was still walking around. After 10 minutes I quit the whole thing and had to be put on Valium in order to get it done. I never realized how claustrophobic I was until being stuck in a tube.

So when I was told I needed a CT Scan this time - I won’t lie - I started getting flashbacks. I immediately googled CT Scan" to see what it was and thought, “Ok, that doesn’t look so bad. It looks like a big donut and I love donuts!” If only I could squeeze them into my peg... Anyway I did have some questions. How was I going to get on it with my breathing tube? Do I have to lay flat? It is hard to breathe when I'm flat on my back... Can someone be in the room with me? I have no way to communicate without my eye gaze. Will I be going feet or head first? What if I have to pee?!?

The appointment was at 2:30pm just 10 miles away at the Fort Belvoir community hospital. This was already different from the MRI’s that always seem to be 50 miles away and at O dark thirty - early in the morning. I was not allowed to eat after 7am, and I had to drink the CT Scan solution prior to the appointment with the last dose at 2pm 30 minutes before. Donna, my nurse, made sure I got it all in. When we arrived at the appointment, we were immediately brought back to the CT area where we stayed no longer than ten minutes.

In the room, we were greeted by the most professional technician ever. He answered all of our questions. The ventilator and urine bag were no problem and were set on the side. They had a wedge to keep my torso elevated and I was going feet first with my head outside. My wonderful nurse Donna came with us and was allowed to stay in the room, right by my side to make sure I was ok. Having her there was very calming for me.  They also had a lift in the room that we could have used if we'd brought a sling. Of course this is the one question we didn’t ask, so make sure you do!

You have to understand that before ALS I would have done the Superman pose the whole time in any machine. Now that ALS governs every part of my life, I find myself more vulnerable. Since I can’t move, tight spaces feel like I am being buried alive. I also freak out when my eye gaze turns off and I can’t get anyone’s attention. I know I am ok, but my mind says, “what if something happens, how will I tell anyone?”

Once I was set up on the table, they also had to set up an IV. Drinking the solution was to check the stomach and bowels, and the IV allowed them to see organ functions. As my ALS continues to progress, my veins have become harder to find. Before ALS you could throw a needle at me from across the room and hit a vein. Now they have to bring in a specialist with an ultrasound. He was really cool, and took his time explaining and showing Laura and Donna every step of the process. He hit the vein like a sniper - one shot one kill. Afterwards he complemented me and said, “You did really good, you didn’t even flinch." As if I could if I wanted to... He could literally cut my arm off and it would hurt like hell, but I wouldn’t be able to move or scream. In a way, I am a BAD ASS super hero. Stab me or shoot me, I will just lay there (because I can’t stand) and take it without a flinch. I just might look on Amazon for tights and a cape. Maybe something in ALS Blue that would show off my buns of steel. 🦸‍♂️

The CT Scan itself took only five minutes, and the entire process took about 30. The Technician was very interested in ALS, my eye gaze technology, and how he could help make the process easier for me and other PALS. You hardly find people who care like he did. Yes, you can find professionals who care, but this was above and beyond.

The next day, the results were in and my doctor called to discuss them. The IV scans showed that all of my organs were functioning normally. They did find elevated cholesterol, but not high enough for concern or to start meds. As far as the bowels go, Laura finally has proof that I’m full of 💩💩💩. She has been saying it for years. For me, I think the test results would be the same for every pizza and ice cream eating, 💩 talking New Yorker.  So all things considered, things went well. Now we will take the results to a Gastrointestinal appointment to right the ship and hopefully have smooth sailing ahead.

You have to remember we are LIVING we ALS, so you must fight and go to a specialist when needed. The ALS clinic is NOT good enough if you you truly choose to LIVE with ALS.

"Never give up, for that is just the place and time that the tide will turn." —Harriet Beecher Stowe

Love and Blessings

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