So, Now What?

7 Apr

 

I feel all kinds of small and ridiculous, making a health update while the world is on lock down and experiencing its own common trauma. Please know that my heart is with the people who are living in high anxiety of virus, financial ruin, or desperate loneliness. That said, I understand that my relapse after 7 years of remission from a progressive state and the road ahead for me is an important piece of information to add to our collective HSCT info gatherers and also for my friends who follow and pray. I thank God for all of you and I pray you are well.

Last week I met with my neurologist through a Zoom video chat. I cannot say enough how much I feel like God gifted me with this doctor. I was highly skeptical of a video chat being any kind of help, but he spent all the time I needed talking to me about my progress from this relapse and my choices for the future, as well as his preferred choices.

First, health-wise, I am continuing to improve. When my video chat started, I could only get video, not audio to work, so I held my phone and walk/ran from my bedroom, to Eric, who was working from home, so he could fix it for me. When I got settled back in my room at my desk, doctor says, “Well, I can see that your legs are working a whole lot better!” I still have minor numbness, but otherwise, my only big complaint is fatigue and muscle weakness. I can get up and go, but only for sprints. He felt like that should get better with time. I can’t disagree, because I really am improving everywhere else.

As far as what to do moving forward, I am going to agree with the doctors here, and in Russia, who think I will just go back into remission. In some ways it still feels like I am taking a leap of faith, but at least it feels like an educated leap of faith. I am going to go forward with no further treatment. Pending an MRI in July, I will move on like this was just a hiccup.

I talked at some length with both of my doctors, whom you know I highly regard, about moving forward with some sort of immunotherapy or even a repeat of HSCT. I can still feel the breeze from the bullet of this relapse I dodged and a part of me wants to strap on a Ocrevus bulletproof vest moving forward. I am not beyond further treatment, but it feels good to think I might could just carry on like normal.

And so, this will hopefully be my last bit of news until my MRI in July, and then after that, we can let this ol’ ninja blog go back to historical artifact for HSCT researchers. I love you all and I pray we are all seeing brighter days come July.

 

On Being Brave

25 Mar

I continue to improve from my recent relapse episode, with no new significant news. Since my last update, everything got flipped on its head for every one of us. If you will humor me, I would like to talk about what makes me brave when things go flipside.

I believe in angels. I believe that God has spiritual beings with powers beyond our imagining that he assigns to watch over me. I also believe that there is an enemy who hates me and wants to trip me up at each step.

The battleground: my mind.

My thoughts are in constant churning mode. What’s for dinner? Are we out of milk? Why did she say it that way? I really should give the dog a bath. I really should give myself a bath. I was a real jerk to that one kid in the second grade. I should look him up on facebook and see if he’s okay. I wonder if the MS is going to come back and everyone is going to think that God is just a big joke and I am fool to think I’d ever be healed. What if that was a healing and now I am just on to the next thing? Seriously, though, what is for dinner?

My trick to being brave is that I am not. I am painfully insecure, terrified of change, and no friend to danger. I am not brave. God is brave.

I memorize Scripture as a serious spiritual discipline. I am not devoted like you’d imagine a monk to be, but when I sit down to work on it I am every time reminded of the sacredness of God’s Holy Spirit inspired Word. Meditating on God’s Word through memorizing has been world changing for me.

I often trip, but my walk is steadied with the constant reminder of God’s character. God is good. God is sovereign. God knows what he is doing. God is always right. You don’t get that assurance anywhere else except in His Word.

I know you didn’t come here for a lecture, but, I happen to know you probably don’t have a lot going on. I just memorize Luke 12:22-34. Read it out loud so you can hear it, and then, try to memorize it. It’s good for all of us.

Dramatically Recovering

11 Mar

Shortly after my last post I came down with a bad cold. The fatigue from relapse doubled and I went back to bed for most days. It didn’t send me into a helpless depressing tailspin, but it did feel like, “What!? A cold? A bad cold? Haven’t I already suffered, LORD? Why do you test me like this? Or, is this not a test and just life? Is life a test? LORD? Are you there?” Also, there was a fainting couch. (Not really, but I want a fainting couch.)

It took took 2 weeks and I have recovered. While I was busy blowing my nose, sneezing, and coughing, my body was busy quietly recovering from relapse. Today is Wednesday, March 11 and I feel better than I have in few months. Still easily tired from activity, but pleased to report these improvements:

  1. I can wear my cute red slip on shoes. I wore them all day today with zero fears that they’d fly off my feet, with no constant effort to keep them on, and I was able to walk normally.
  2. I don’t need the cane anymore for balance at all. I don’t even really need it for fatigue, as long as I am able to sit down immediately when I need to. I will likely still bring it when I go to church or similar. It helps me and all those around me to be mindful that I am not 100%, no matter how great my hair looks.
  3. The numbness in my legs and feet is almost completely gone. It flares a little if I get tired, but, again, I try to immediately sit and rest.
  4. The pain from spasms has lessened a good deal and is easily managed with rest, stretching, and position changing.

Early this morning I was showing off my shoes to a good friend and I did a little sashaying dance. This is something I could not do 2 weeks ago and I was a little surprised, so I did it again. My legs felt springy and sure. I continued do little dances all day. As the work day closed, I attempted a little dance to show my shoes off to a new audience. My legs felt more jelly than springy and more cautious than sure. This reminded me that I am not done yet. But, really, so much better.

I see my neurologist March 31. I had an appointment on March 6, but had to cancel when the car I was in suddenly lost all coolant and had to be stopped on the side of a toll road on the way there. Also, I had a cold that day, so you know I was praying dramatically on that roadside. “Oh, LORD, a relapse, a cold bug, and now this!? How am I supposed to go on like this? I just can’t, LORD. I can not.” But then we had Chick-fil-A for lunch and I got a new wind in my sails. Hope all y’all are keeping on keeping on, too. I love you all. Totally mean it.

(LORD willing, I will be sharing the book of James for 11am chapel at ACU on March 18. It’s been a long time coming, ACU.)

Because Everybody Loves a Top Ten List

25 Feb

I have been assured that my case is not urgent or critical, though I am leaning towards accepting immunotherapy to better support remission. This will not be discussed clinically until late May, so this is all I know right now.

Let’s talk about what it looks like when things are “not urgent”. If MS is a body of water, I am ankle deep right now, though I stepped off a ledge for a moment and had a scare, I appear to be getting my bearings back.

I would say that things certainly looked and felt urgent on January 27 when I first saw a neurologist. I am still not back to all better, but much improved. This week I am going to give you a Top Ten list of things I couldn’t do, or had difficulty with, on January 27, that has now improved.

10. I can walk across a dark room with ease. I could not feel my feet, so stumbled over every little thing.

9. I can drive. Lacking feeling in my right foot meant that I had no idea how much or how little pressure to apply to brakes and gas. I took myself off the road when I found myself driving 78 in a 55.

8. I can put my pants on standing up, one leg at a time. Do you have any idea what a skill that is? I remember the morning in mid January when I realized I would have to sit down, because I did not have the balance to raise one leg long enough to put my leg through a pants leg. It was a gut punch morning.

7. I can tuck my chin to my chest without a sudden electrical shock going throughout my body. If you’ve never experienced this sensation, I can’t explain it. It’s not painful, but it is annoying enough that I would avoid movement to bring it about. Today, I like to tuck my chin just to check. Yep. Still gone.

6. I can wear my cute flats. The numbness in my feet is still there, but so vague as to be more a hint of numbness. It takes a lot of work to keep shoes on your feet. Did you know this? At my recent worst I could only wear shoes that tied on, strapped on, zipped on, or was otherwise welded to my feet. I cannot describe the extreme discomfort I felt, trying to walk and hold on a shoe, something I tested in my closet every few days. On this past Saturday, I tried on my favorite red leather driving flats and found I could walk with ease in them. Though I think I am still weeks away from being able to wear them all day.

5. Sitting down is no longer a trust fall. My poor balance, together with numbness that persisted through my legs and up my waist, made sitting down a thing to think about. I had to see the chair, make note of its exact area, turn with my back to the chair, find something to brace myself with, look back at the chair, then slowly lower myself until I stopped lowering, trusting that it is the chair beneath me, because I could not feel it.

4. I can turn my head and look at a different place than where I am walking, still walk in my desired direction, and not tangle my feet.

3. I can walk up and down stairs without looking at my feet. I still do to be sure and avoid stairs if I can, but have tested it and can do it.

2. I can step up and over the side of my tub/shower without having a whole long moment of getting a lay of the land, finding my feet, deciding which foot gets to try first, finding a place to put my hand, wondering if I should get rails installed… totally over that.

1. My walking gait without a cane is just as good as with. On February 5, when I shared James, I used a cane because that was the only way to walk without thudding steps like a toddler. Now, I use the cane because I am still so  very easily tired and it’s nice to lean on like a walking stick.

 

So, there’s my update for the week. I don’t know much more than last week about what my next steps are, but I at least know that I can step. Thank you all for keeping up with me.

Nap Time is Work Time (Feb.19)

19 Feb

On Sunday morning I woke up and put my feet on the floor. It was the oddest thing. In my left foot I could feel the carpet. You never care that you can feel the carpet until you can’t and then you can again.

I went to church and told everybody that I could feel the floor in my left foot, and then I came home and took a nap. I nap a lot these days.

By Monday, the sense of feeling had returned to my entire left leg and rear end. Also, on Monday, I closed my eyes in the shower while I shampooed my hair and did not lose my balance in the least. Maybe only MS patients with balance issues will get why that is pretty huge, but I think most people know it is preferable to close your eyes while soaping up your head. After my shower, I took a short 20 minute nap. Then lunch at home, and then another nap.

When Tuesday rolled around, I had started to strongly suspect that all my napping was not symptomatic of a relapse, but rather my body’s need to rest as it repaired. On Tuesday, I washed my duvet cover and sheets, two other loads of laundry, cleaned the bathroom, and made spaghetti for dinner (others cleaned the mess I made in the kitchen.) Also, two naps.

Today is Wednesday. I am still using the cane, but mostly because it feels very good  to have it to lean on when I get tired, which happens quickly. My balance and ability to walk a straight line are almost back to 100 percent. My right foot and torso still feel numb, but substantially better. Spasms in my rib cage are substantially better. Today I worked a relaxed version of my full 5 hour shift at One Day Academy and then substitute taught a one and a half hour English class. Now I am home, updating this little ol’ blog for you all, and then, nap. Leftovers for dinner.

To recap my prognosis and plans for future treatments: my doctors suggested that I would continue to improve from the 3 day steroid IV. So far, they are correct. Further, they suggested that my 3 month MRI (late May) should be free of enhancing lesions and that my remission may well be reset with no need for further treatment. Frankly, that last bit sounds too fantastic to make sense or be true, so I am 100 percent banking on it.

I love you all. Totally mean it.