The Good, the Bad, and the Ugly

Yes, 2.5 years into this disease it is the good, the bad, and the ugly.

First the GOOD:

I have good local doctors who care about me and want to help.

I have great neighbors who will go on walks with me and have boys for my son to hang with.

I have a wonderful husband who is my caregiver despite his own health issues.

I have a wonderful 17-year-old son who spent his two week spring break with track practice and meets and 4 Eagle Merit Badges and his Eagle project proposal.

I have friends and family who check in on me and help out when needed.

My cousins Salli and Alec, whose brother died of ALS, and my brother Pete are all participating in the UCSF ALS and Dementia study. Their participation will get us closer to a cure.

I went back to aqua fitness once last week.

I decided to add some color to my hair to counteract the bad and the ugly.

THE BAD:

What I have thought was allergies (and some of it was) is mainly reflux which is now so prevalent that I have to be careful. Even putting on my shoes or bending over without knees spread causes reflux. And every meal causes reflux too. And the associated headache may be migraines although there is a sinus component. But I got a prescription for the headaches and we got a Sleep Number Bed on order. I have been using a wedge but I slide down and wake up with reflux in my mouth. I will try sleeping in a chair until the new Sleep Number Bed that we ordered arrives.

THE UGLY:

I have to suction out my throat, and after a few days I have to clean it out and boy does it stink. At least I can still clean them myself.

I have to wear Depends every day now. What feels like passing gas could very well be a bowel movement.

OK TMI

But there have been limb involved patients who told me they were jealous. But I don’t think there is any easy path with ALS. But there is always good with the bad and the ugly.

12 thoughts on “The Good, the Bad, and the Ugly

  1. Hi friend! The wonderful, positive attitude and humor is just what I needed to hear today in the midst of a personal pity party :\
    Thank you for sharing. Your indomitable spirit is inspiring and motivating.
    Wishing you continued strength and courage ❤
    Love,
    Cat

    ps: Dig the lovely strands of color on those amazing curls!

    Liked by 1 person

  2. Happy Spring, it is wonderful to hear of your family activities. Andy’s Boy Scout accomplishments are really great. And good luck to him on his Eagle Project! Your steadfast energy to keep moving forward is inspirational and a good reminder to take it one day at a time. Love to all the extended family..

    Liked by 1 person

  3. Hey Meg,

    I second the comments in the replies above!

    Your communication of your thoughts, feelings, experiences and accomplishments is a GREATER GOOD worth so much to all of us who read you! Thank you for keeping us all in touch! And keep your spirits up knowing we all love and support you!

    Your colorful hair ‘ribbons’ are awesome! It’s amazing how much you resemble Beth in that picture! Remember when her hair was like that? High school maybe? Though I guess without the added colors!

    Good luck to Andy! Today should be Sam’s first Little League baseball game! Depending on the weather. At tryouts last month, he was ranked #1 for AAA, and the Majors coaches we’re wishing he’d graduate to join them now. Maybe next season!

    Love from your sister Catherine 💕❤️🌦🌤☀️

    Liked by 1 person

  4. Hey Meg, I only have a second but wanted to tell you very quickly that we have sleep number. I have terrible allergies and get sinus congestion when I lay flat so elevating my head helps tremendously. I slide down though while I’m sleeping and sometimes wake up at the end of the bed laying flat. The only way I have found to combat this is to slightly elevate the end of the bed. It’s not as comfortable but it works. Best to you!

    Liked by 1 person

  5. Hi Meg,
    GOOD blog as usual! We are here for you & Stan. We’ll enjoy Andy’s visit, let us know if he’s suppose to do anything he might forget to tell us. Safe trip to UCSF.

    Liked by 1 person

  6. Love this post, focusing on the positive, while being honest about the bad and the ugly. Your hair looks great, not just good! Congrats to Andy on his Boy Scout achievements. I wonder how many people know that “The Good, the Bad, and the Ugly” was a 1966 Clint Eastwood movie? Keep on blogging!

    Liked by 1 person

  7. The good…your hair looks amazing, which comes directly from a curly girl who knows what a pain it can be to deal with. As for the bad, I’m so glad to hear about how much support you have. I can’t imagine how difficult it must be to have these “new normal” items in your everyday life. You & your family are truly an inspiration!

    Liked by 1 person

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