Although my week so far has nothing to do with the 1960’s science fantasy novel about time travel, I do feel as though I’m having my own version of a wrinkle in time as circumstances are forcing me to move at a snail’s pace physically and at warp speed emotionally. I’m ending the week physically exhausted and emotionally manic…”wrinkled” feels like the perfect adjective.
It all started with a little tumble on Tuesday night that turned into a pretty debilitating injury. My weakened left leg caused me to fall while stepping up one little step into my bedroom and I ended up badly spraining my good ankle. It could have been worse, for sure, and I’m so grateful I didn’t break anything but the injury has severely impacted my mobility and I’m walking with the extra support of a walker. I expect to recover fully from the sprain and hope the use of the walker is only temporary but the reality of the situation is that this fall was a result of my disease and the process is only going to continue so I think it’s safe to say this won’t be my last fall and/or injury and that’s a tough pill to swallow. One crazy thing about ALS is because there is no pain associated with the disease, there are also very few markers with which to measure the weakness in my body beyond trial and error…there’s no barometer to indicate change. (I kind of feel like the frog in the pot of water unaware it’s beginning to boil.) The weakness in my extremities is really only measured when they fail me…usually with no warning and in a split second. This can be both terrifying and humbling.
Then, yesterday I got a couple of calls out of sequence in the late afternoon that are ultimately good, I think, but were initially confusing and abrupt and resulted in me being told my picc line is getting placed AND my first infusion of Radicava is happening TODAY!!! Yikes!!! This is definitely a lesson in perspective because on one hand, I could look at this sudden turn of events as a miracle and rejoice in the fact that I don’t have to wait any longer to begin this medication treatment. On the other hand, it’s a life-altering process that, once started, will continue for my lifetime and that feels daunting to me. It’s all so clinical and routine for those coordinating the treatment and care…it’s all so new and consuming for me. I need time to process, to adjust, to breathe and I’m not being given that space. I guess I need it to happen supernaturally…on God’s perspective of time because it isn’t happening in “real” time. I don’t mean to make it a bigger deal than it is but from an emotional standpoint, I feel like the “sudden turn” experiences of this week are pretty consistent with how life has unfolded for us in recent months…losing Rudy so abruptly without warning, my diagnosis so quickly afterwards, the progression of my symptoms, etc, etc…It’s all coming at us so quickly and the gut punches are feeling relentless today. I want a break. I want to be able to stop for a minute and not have something new to process or adjust to…I want to take long, deep breaths…I want time.
I’m also keenly aware of the fact that this is all happening at a time that is typically difficult for me anyway…the month of January has always been hard for me at varying degrees over the years due to post-holiday blues and, when Rudy was alive, the start of “out-of-pocket” maximums again (random, I know, but true). If ever there’d be a time I’d sink into depression over all that’s been going on, it would be now.
So, if you would be so kind to continue to pray, my requests for today include but are not limited to (insert smiley face):
- A healthy, balanced, motivating perspective on life right now.
- Quick recovery and renewed strength in my right ankle.
- Protection against depression.
- Supernatural ability to adjust to all the sudden changes gracefully with a light-heartedness.
- Strength of spirit for all the Geylings.
- All around good experience with Radicava.
- Lots of reasons to smile.
If all goes as planned, my temporary PICC line will be inserted today at 1pm and my first hour-long infusion will take place at 4pm. I will receive Radicava everyday for 14 days. My first 3-4 infusions will happen at the hospital and if I tolerate it well, Rolf and I will be trained to do it at home sometime next week. After my first 14 days of treatment, I’ll get 2 weeks off. At some point I’ll get a permanent port placed and every month after that, I will get 10 infusions within a two week period (i.e. infusions M-F for two weeks) and two weeks off for the rest of my life. Radicava is thought to slow the progression of ALS symptoms (not reverse them) so the hope is this infusion treatment will help to stabilize my situation. The effectiveness of the drug, of course, is kind of vague because I won’t know what I’d be like if I weren’t on the drug. It’s not like I’ll have a shrinking tumor to demonstrate that the treatment is working so I think my approach going into this is to assume it IS working and not wonder if it is, if that makes any sense. A good bit of this will be a mind game.
I’m sure this will all become second nature to us and we’ll figure out how to incorporate it into our daily routine of life but today it feels big and invasive and like something that’s being done to me rather than something I’m choosing to do for my own good. The number of paradigm shifts that are necessary right now is growing and, I guess, it would be nice to feel (and look) a little less wrinkled. 😉
THANK YOU FOR YOUR PRAYER SUPPORT! You have no idea how comforting your prayers are to our family. Love, love, love to you and yours!
Rudy's Beat 
Oooooohhhh sweet friend. I’m lifting you up right now. Dear Heavenly Father. We come to you with heavy hearts but know that You were in total control. I pray for an extra measure of comfort and peace for Trish as she awaits the new medication today. I pray that you will work every detail out with no more wrinkles Lord for her and her family and for a renewed spirit Lord. Your mercies are new every morning!. We love you and praise you in the midst of the storm!
Trish, I pray your sprain heals quickly and that you adjust very well to the medication.
I am sending you big hugs and kisses. I love you. Melani
Spent some time lifting you up to the Lord this morning, Trish.
PICCs and Ports will become routine, but your perseverance and the love and prayers that will always surround you, never will. Love J&J
Praying that God provides moments of laughter today, extraordinary compassion and care from the medical pros that serve you and times of awe and wonder. And that God gives you the grace of healing tears. Hugs to both you and Rolf and to Olivia and prayers for all of you, Wilson and Max included.
Trish,
As I read your posts my heart breaks. Please know that you and Rolf and the kids are on my prayer list and have been for years. I call out your name to God on a daily basis. I can’t bwgin to understand how you are handling this but only know to weep and pray. The Lord has been working on my heart lately with two things. One, do NOT worry about tomorrow for tomorrow will take care of itself-do not borrow worry. And secondly, HIS mercies are NEW every morning. I share that in hopes it will help for TODAY. Go through THIS day and don’t worry about the next. (Easy for me to say, I know!) And allow HIS mercies for TODAY to be 100% new and fresh. You are loved and prayed for everyday. Bonnie xo
Oh Trish, I’m in awe of your honesty and vulnerability during these difficult times. Which seems like an understatement at this time. Praying for you, your doctors and family daily. I love you!
Trish, we lift you and your family up daily. Love you, Sars
OH NO!!!! That darn step!!!!!! ……. I can’t imagine the idea of New Years….of looking ahead, knowing that it will be mostly hard, sprinkled with moments that make you smile!!! I know, though, that all these clinics, every doctors office, your family, and your friends are all going to be enriched when you are there……even in your weakness, dear friend, you are wonderful. You bring VALUE to everyone you meet. You have enriched my life immensely! Love you much!
Oh Grace! Your thoughts are just expressed perfectly here for our precious Trish. Trish, your life is such a treasure and more than anyone you and Grace have impacted my life to be a worshipper. In this moment as I read your post it seems you are in quite the battle, but it was you who taught me that worship is a spiritual weapon in times of battle. That is what I am doing this evening worshipping the one true God who loves you deeply and intercedes on your behalf before the Father. I see Him smiling at you and your beautiful twinkling eyes set on his. Love you dear friend. Robbie
Thank you for keeping us posted. You are always in my prayers, now with added focus. Praying for freedom today – freedom from overwhelming fear/anxiety, freedom from depression, freedom for rejoicing that there is a treatment, freedom to imagine AND experience some sense of relief. And also for rapid healing for that ankle. Love you, will travel to you, as needed.
Take your beads. 😏
Trish and Rolf, our love and prayers are with you. May you know God’s comforting presence in the midst of all the changes. Jason and Susi
You have always taught me grace in your being. I look forward to seeing how God’s grace will be reflected in your life. Keep strong in knowing His presence.
By name… every single day.
Praying!
Praying!
Praying for that peace, for that time and for that strength. As for laughs, I would send some pictures of myself but instead of laughing I’d probably cause you and many other women to stumble and to be frank, Rolf might switch teams so I will keep the speedo in the drawer. We love you and hope to visti you this summer. I can honestly say that not. day goes by without a thought to you or your family and prayer in there. You mean so much to so many people and if all I can is pray, I will pray.
Sending tons of prayers and love to you and your family ❤️
My lovely, amazing friend,
We pray for you every day but it really is helpful to have this list of things that you are asking for today. We certainly are lifting those to our good God and know that he will meet your needs as you trust in him. So thankful that you do have such wonderful family members around you at this time… Incredible reasons to smile and be thankful. Thinking of you with lots of love! XOXXO
Your list is now my list and I will carry it forward and upward in prayer each day. Your strength and clarity amidst this struggle show just a tiny piece of how wonderful you are Trish. Just thinking of Rudy these days brings huge grins to my face and what better way to remain clear and strong. I would love to drop by one day. We can blow away any force that attempts to push depression in the door…poof! May you sail through your treatment and heal your ankle at warp speed. With blessings from the heart.
Prayers sent for you and your family. Trish, recently I received Bluetooth Headphones as a gift which I use to listen to my favorite music on Amazon. From Christian Rock, to Frank Sinatra, to Led Zepplin, I personally find that outlet to be very helpful and a welcome distraction on some of my down days in this journey we call life. Just 30 minutes a day seems to help me iron out some of my wrinkles, nothing compared to your tyoe of wrinkles of course, but nonetheless still interuptive all too often. An idea to consider ? Anyway, I pray for your strength and wish list ! Stay strong !
Heard today in my Pray As You Go app about Epiphany, celebrated today in much of the Christian world. It draws us to new insights, directions and perspectives that God brings to us. Reminds me of the new directions and perspectives in your journey that GOD is in and guiding you through. May His perspective, strength, healing, protection from depression, supernatural grace be yours each day. They say that some wrinkles are from smiling, don’t they? oxo
Trish, rereading your post this morning and lifting you and your requests to God. I was thanking God for the treatments that are available now for ALS. Am praying the Radicava will give you the relief and sustainable strength you need in your muscles.
So much! I’m praying for you.
. Trish, your life is such a treasure and more than anyone you and Grace have impacted my life to be a worshipper. In this moment as I read your post it seems you are in quite the battle, but it was you who taught me that worship is a spiritual weapon in times of battle. That is what I am doing this evening worshipping the one true God who loves you deeply and intercedes on your behalf before the Father. I see Him smiling at you and your beautiful twinkling eyes set on his. Love you dear friend. Robbie