Top Ten from Texas
1. Diagnoses are just words. Listen to my body.
2. Be encouraged. Encourage one other.
3. When I relax, I feel better.
4. Stretch every day.
5. Sleep allows the body to heal itself.
6. God does answer prayers. Well, I knew this : ) ...just a nice reminder.
7. A no is a yes to something better.
8. Use what you have.
9. Reimagine life 2.0
10. I so love my husband and my dog... and they both need my attention. Steve first, Albert next. It makes our family happy.
Advent = Fullness + Gratitude
A full life is not about cramming every last moment but taking every last moment slow so there will be more and more moments. My speed of life is speeding up my symptoms and slowing down my life. Riddle me this batman: essentially less is more.
A full life is a life full of gratitude and hope for each and every moment.
Steve and I are taking a hiatus. Please be patient with us as we redefine our rhythms and routines. As my friend Stephanie says it is time for a “me” month. No extracurricular activities, just a recess, our own sweet advent this season.
Healthy Update
A well-oiled, focus team can produce great results all while being present, empathetic, and kind. It was worth the trip to Houston Methodist and Dr. Appel. The care was amazing—Steve and I looked at each other over and over again, dumbfounded, praising God, and with a new found hope with each and every physician’s input. We had four years of testing completed in three days, and a sleep study. And they affirmed my new doctor in Chattanooga is right on the money. [alleluia and amen]
Moving forward, I need to focus on three things: sleeping, breathing well, and no more falling down.
The first and foremost great news: I do not necessarily have ALS but PLS. This is consistent with the atypical diagnosis that has sent doctors in a tailspin. It is rare only 500-2000 people diagnosed. PLS has many of the same symptoms but is not fatal, [alleluia and amen] and it may become ALS, or may not. I need lots of healthy breathing and sleep to let my body heal and recover from every day life. Currently when I sleep my body can’t breathe well on its own; so a similar device to a CPAP will help to restore my sleep, and my strength.
Secondly, I need to prevent falls at all costs—these traumas can cause major setbacks. Let me introduce my sidekick, the rollator, I’m not happy, but resigned and once in hand, I’ll be vrooming all over again.
And thirdly, that nagging cough, the chronic one, the lingering four-year cough, that one… it is asthma and asthma can be treated. [alleluia and amen]
Lastly, the infusions may or may not be responsible for my decline. In Houston, we also learned half the Radicava patients see symptoms speed up rather than slow down. I do know the exposed needle prevents me from going to aqua pilates and interrupts my routine and sleep. I need to continue to use the muscles I have without overexertion which is why the water workouts have been so good for me, plus it is a natural pick me up. So we are pausing the infusions—plus we found out Radicava affects asthma and my gait. Oy vey.
The Very Last Learning
Even though we have shifted my diagnosis it hasn’t shifted my approach or my every day. My body continues to decline even with PLS, I now live in 15-minute increments* and do so relishing the moments more and more. I continue to be encouraged by the thoughtful words, the prayers, and sweet surprises. Thank you, my cheerleaders and champions, every day you remind me of the goodness of a full life.
Go and gobble up all the joy and laughter and hug tight to the ones you love. Happy Thanksgiving!
Love, Victoria