Monday, June 18, 2018

It's Your breath in my lungs...

I've written quite a bit over the years about breathing, and particularly my struggles to breathe. I've been reviewing some of my old posts, and I listed some of the links below, in case you want a review, too. The interesting thing to me is that most of these posts also include song lyrics - worshipful songs about air, breath, spirit and strength. Singing, to me, is a sort of joyful cry of victory against weakness and despair... it is the evidence of a Power deep inside me that is much greater than me.

Today I had my 6-month pulmonary check-up. I did the obligatory annual breathing test and let the doctor listen to my lungs. The conclusion was that my respiratory strength is the same as it was last year, and to me that was really wonderful news.  See, in the past year, I've had two surgeries in which I had to be intubated, and I was in the hospital with pneumonia only four months ago. I really expected that my strength would have weakened with all this drama.

When I originally talked with my neurologist about what Spinraza might do for me, she said, "At the very least, it should stop the progression of the disease." At the very least?? a disease that has slowly chipped away at my strength and health would be stopped?? Wow, what a miracle. I wonder if Spinraza is working to stabilize my lungs. I wonder how that happens, how protein injected in the spinal chord is able to do this, and I wonder what exactly "this" is that it's doing.

I wonder about science and research and medicine, and the mysterious role it might play in reversing bits and pieces of the curse of Sin... But I don't wonder about Jesus. If I am certain of anything, it is that He is my Strength and my Portion and my Song. He is the breath in my lungs, and I pour out my praise to him only.

Past posts about breathing:

Sept 15, 2011
Nov 1, 2011
Jan 25, 2012
April 8, 2012
April 27, 2012
June 21, 2013
Dec 5, 2017
Mar 2, 2018

Monday, June 4, 2018

Dose #6 of the Super-Soldier Serum

Today I got my sixth dose of Spinraza - it's been 10 months since I began this journey with the first dose!

The lab work was a success - as in, it only took three attempts to find and retrieve two tubes of my platelets... So that's good, right? I think I'm becoming notorious around the lab. The lady who called me back actually remembered me from four months ago, and promptly rounded up three other phlebotomists to assist her. Special thanks to the one who gave me a "Skylander" Band-Aid, and major kudos to the feisty little lady who stabbed me fearlessly and wouldn't take "No" for an answer from my shy and elusive veins. I saw my neurologist on the elevator afterward, and observing my multiple bandages and bruises, he casually said, "So... I see you got your labs done." Mom treated me to a cherry danish and tea afterwards, which is becoming my regular post-blood-draw reward for NOT crying or biting anyone. Overall, not a terrible morning.

Three hours later, I was in Diagnostic Neurology, signing my name in acknowledgement that this treatment could result in headaches, bleeding, infection, or DEATH. My doctor is always quick to add that the "death" part hasn't happened to any of his patients so far, blah-blah-blah... I waved him off and signed with a flourish. Please, give me this moment to face Death and feel just that brave! Again, that epic scene from Captain America flashed through my memory, and I smiled as I told myself that it's "super-soldier serum" time. I was really quite proud of how cool I was being about the whole thing.

From weakling: Chris Evans stars in Captain America: The First Avenger as a scrawny man who is transformed into a muscle-bound superhero. Scientists now believe they can replicate this over a period of months with a growth hormone

One more hour later, and I'm laying on my side, facing a taupe-colored wall ("They say taupe is very soothing"). I can't see what's going on, and no one is giving me any verbal hints. I know there's a small needle in my lower back, and we're somewhere in the process of either sucking out cerebral spinal fluid or injecting Spinraza. It doesn't hurt me at all... I felt the initial stick of the needle, but honestly that is it. My doctor is very careful and cautious and takes his time to make sure everything goes all right, so I just need to lay still and stay calm and not be the annoying kid who keeps asking "are we there yet?". So while I try to find patterns and count the various shades of brown in the wallpaper, I reflect...

Last year at this time, I was still in consultation mode with the neurologists. Lots of unknowns, but also lots of optimism. I knew there would be risks, but I didn't know how complicated, long-term, or painful it would be. The past year has been quite a roller coaster ever since... as the Lord uses this medicine to strengthen and sustain my body, he seems to have a correlating (if not increased) interest in the condition of my heart... to remind me to find my strength, purpose, joy and hope in Him. Again and again, he proves himself almighty and faithful to me.

Today's treatment went well, with no problems. I had a little trouble with my breathing shortly afterward, and felt tired and emotional the rest of the afternoon, but the doctor thinks that's all due to stress relief... I guess I was more anxious and stressed out beforehand than I wanted to admit. But all in all, I'm curious, and yes, even excited to see what happens in my life in the next four months before my next injection... I'll be sure to keep you posted!

Tuesday, April 17, 2018

I have this hope...

I had the privilege to go to a special luncheon last Saturday for local families of Spinraza patients. I met a man in his 50s who started taking Spinraza at about the same time I did, a mother whose 7-year-old daughter is on Spinraza, and a mother whose 3-year-old daughter was one of the earliest Spinraza patients. It was really wonderful to meet these people, hear their stories, and get to share my story with them.

The thing that brought us all together was Spinraza, and I know one of the main purposes for bringing us together was to talk about how great it is. And there is nothing wrong with that - I'm a big fan of this treatment, and I'm excited to see how it will help me and lots of other people. I am thrilled to know that young children with SMA now have the chance to develop their motor skills, and that adults with SMA can maintain and rebuild their strength. I am so thankful to know that Spinraza is just the beginning - it has opened doors and increased research opportunities for other treatments and possible cures to be discovered. It's a miracle, and it is changing lives all over the world.

But my hope is not in a drug called Spinraza. Long before an answer was found, long before the FDA approved it, long before doctors were able to conclude their diagnoses with: "...but a treatment is coming soon," I found peace and hope and joy. It came in the form of a relationship and a promise - and it didn't ignore my disease, but it also wasn't contingent upon it. I chose to take hold of it as a small child, but it's taken a lifetime to understand. I've wrestled with it, desperately clung to it, and almost lost it at times... it's stretched and grown and deepened, at about the same rate as my muscles have tightened, shrunk and atrophied.

No copyright intended.  image does not belong to MissVenShaw.

No matter how small, weak, sick, or unable I am or become, Jesus is strong and constant and great and mighty to save me. He promised never to leave me and never to let me go, and after all the things we've been through together, I can't help but trust him. He promised that he knows and understands me fully, and when I read and remember all that he sacrificed and suffered for me, I know it is true. No matter what else changes in my life and my world, his promises stay the same. His love, mercy, and faithfulness to me has never, and will never fail - this is my hope! 

I'm thankful God has given me the chance to experience a treatment for my disease, and that I get to see his creativity, intelligence, and ingenuity through medicine and science. But whether or not Spinraza has any effect on my body, I know my life is purposeful and beautiful and valuable, because Jesus has saved me and made me whole.