8.15.18 August Clinic

Clinic was great, clinic is always great. I get an emotional burst from going, from being in the presence of people who care about me, about my successes and my struggles with this disease. The therapists, doctors, and staff are my family, we have been in this fight together for 3.5 years – we’re all invested.

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Any time I get with the Cromie clan is cherished. My Brotherman, Scott, takes great care of me. He asked great questions, reassured my doubts, and was an active member in every conversation. My sweet niece, Ella, served as a great table – she held everything I threw at her and help me get all of my crap together and out the door. My sweet hearted nephew, Reid, worked hard to keep me upright and moving forward. I asked if he learned anything, and he told me that he enjoyed meeting the other ALS families and seeing the care each provider took with each family.

As with every clinic, Mexican food and margaritas are required. Ella had her heart set on Joe T’s so we feasted. If you haven’t been, you need to go now. NOW!

Clinic evaluations were normal:

  • Down a pound, so need to eat more and keep my water intake up
  • Breathing was down, need to get back into the routine of using my bi-pap daily – interesting article here
  • Maybe my hand strength was up – didn’t confirm so we’ll say yes, whooo!
  • I feel like my tongue is getting weaker which is terrifying
  • No medicinal changes, upped my anti-depressant at my May clinic and so far so good
  • I officially signed my DNR form

Kind of morbid, sorry. It’s something Kenneth and I have discussed at length and something that we are constantly thinking about. Clinic is great for morale, for educating. It also brings out the realities of the road ahead with ALS. My body is deteriorating, not rapidly but noticeably. My tongue is weaker, which leads to trouble swallowing, breathing and talking. That’s tough to process.

I’ve told y’all before and I’ll tell you again: I’m not scared to die. I know where I’m going, God and I have that part figured out. What scares me is what it’s going to look like up to that point. What scares me is what I’ll miss: babies, marriages, celebrations. What scares me is leaving Kenneth to clean up the bits of my life. Sleepless Sunday night opens this jar of worms wide open and casts doubt on my optimistic, sunshiny self.

ALS Sucks and it’s terrifying. We’ve got to end this disease.

2 thoughts on “8.15.18 August Clinic

  1. I feel the same way. I notice changes everyday as well my legs are weaker and it’s getting harder to walk. I’m terrified of not being around for my family. I thought I would have more time. I need to fill out my Advance Directive and Power of Attorney. And probably a DNR. But I know I will die from this but I know where I’m going. So we need to find a cure so no one else has to make these decisions. Stay Strong from Wonder Woman 🙂

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  2. Hi Sunny,
    As part of my neuromuscular disease, I’ve had horrible oral-motor weakness along with the inability to swallow safely as well. Please make sure those around you are well-versed in the Heimlich maneuver and think about ways you might be able to perform it on yourself as well. My husband has had to do it twice and I have done it myself once. We all know we’re going to check out eventually, I just didn’t want to do it choking on a damned burrito!

    I will say, in my case, every time I’ve choked that badly, time seemed to slow down for me. I was able to process what was happening and the Heimlich was calmly and successfully performed. It is really a handy skill to know.

    Take care!

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