Update: Improving and Adapting

The sun comes up, it's a new day dawning, it's time to sing your song again. Whatever may pass and whatever lies before me, let me be singing when the evening comes. -- 10,000 Reasons, Matt Redman

I suppose it's also time to give you good people an update about me. I want to start off by saying that I am SO MUCH BETTER, and while not fully restored to physical abilities, I have seen progress. Not everyone does. I'm still hoping for more progress, but if it comes, it will come slowly, and so every day, I have to consider: What if this is the most improvement I will get? Can I live and work with this? The answer is "Yes." So each day that I get to see even a tiny tick of betterment--slightly less tingling pain, slightly more sensation, more stamina on stairs or during a longish walk or while standing to deliver a presentation--each day something like that presents itself is a bonus to me.

I would not qualify my physical condition as a result of the transverse myelitis attack on my spinal cord as debilitating.

For that, I am so very thankful. Many people who are hit with this and similar rare spinal cord diseases suffer with paralysis, long-term pain, and loss of use of limbs and/or digits. My residual effects are minor in comparison to what I have learned about many others.

My condition is not debilitating, but it is still challenging. Pain is mostly under control with medication, but the medication does not help with the numbness that I still have in my lower left leg and foot. I have recently regained sensation in my left heel, though, and that has been super-encouraging. That numbness is a matter of the nerve damage in my spine, and there is no drug that can repair the damage. Only time, good nutrition, and the power of God can address that. 

In my case, I have insecure footing that comes from that numbness, pain in the form of tingling that is generally manageable with gabapentin, taken three times daily. The perception of movable bands of weakness and fatigue in both right and left legs--which is a phantom weakness--is getting less and less. I'm hoping that continues. My muscles are actually fine, but the damaged nerves in my spine are firing off desperate and inaccurate signals to my brain telling me my legs are shaky, weak, about to buckle under me. I keep climbing those stairs to prove to my brain that it just isn't so. 

So, I'm continuing in hope that I might see more improvement, but at the same time making some smallish changes around the house and office to accommodate my particular challenges and make regular, daily life as manageable as possible.

Most of these are taking actual physical form, but some are activity oriented. Eventually, I'm told, I will need some physical therapy, but in the meantime I try to get as much normal movement in as my legs and heart (cardio was a mess while on prednisone--heart rate and blood pressure stayed elevated no matter what I did; I am now off the steroid and already see a slight decrease in resting heart rate; hoping blood pressure will follow suit and drop back down near my previous normal range). My brothers and friends help me with this by constantly challenging me to FitBit steps competitions and I'm keeping up with them as best as I can right now. It takes a team and I'm grateful for mine!

As the weather warms, I plan to tackle some altitude in the real world.

I shared in another place that the wonderful man in my life (his name is Chris) and my good friend Jordan, with other friends Cathy and Jack and Ashley and Woody stopping in to see if they could help too, tore out and replaced my stepping stone walkway to my back door. They did a wonderful job of removing a path that was gappy, uneven, and treacherous for not-so-nimble feet, and now I walk safely and as smoothly as possible to and from my car and home. I am so thankful.

But I'm not going to be able to easily mow the steeper parts of my yard this spring and summer, and already, the grass back there is beginning to rise up in scattered clumps that demanded attention. (Chris did the initial mowing for this year for me.) The sloped area is not large, but it was already difficult for me to manage on my own with my small but hardy Murray lawnmower that I depend on to partner with me in that job. Murray and I struggled even when my legs and feet were fully in this game. So some landscaping is on the horizon, and soon.

Front slope

Back slope, where the rainwater also collects.
We've had actual algae growing on the mud at the base of this one.

A small portion of my tax refund is going to some more mulch, gravel, dogwoods, azaleas, and groundcovers. I'll have to stage the landscaping plants because they are so expensive, but the plan is to put in a few feature items, groundcovers, and then mulch the slope and use gravel at the base to turn the muddy areas (one even has ALGAE growing on top of the clay mud after all this rain) to make them as maintenance free as possible. I will still be able to mow the flat grassy strip above and below each area, but the slopes will hopefully be mostly hands-off after this project is done. A married couple who are also outward-thinking, sweet and supportive friends, have offered to come over on "planting day" once I set the date, to help dig and plant and mulch. That will make it so much more fun and help the project move along quickly as well. It makes me look forward to it. So I told Dave and Christine I would let them know after I "call before I dig" to have utilities marked, and then purchase the plants that I'm able to do in phase 1.

Dinnertime prep and aftermeal cleanup have gone fairly well with the exception of one hard day last week. I am giving myself a little bit of grace in this area while I learn how to do the same things I used to do when they do contribute to a building of late-day fatigue or pain. I am allowing paper plates at the dinner table at least once per week. But I decided that it might help me to invest in an anti-fatigue kitchen mat to remove some of the standing pressure that increases the tingling pain. Just as I was researching those, and finding them MUCH more expensive than I expected, I got a promotional email from Brad's Deals with a deep discount on a selection of cute mats. I couldn't believe it. I was looking at 1/2" mats on Amazon with mediocre reviews for $50 each, and here on Brad's Deals was a 1" mat with a number of cute, kitcheny decor patterns, for $16.00. I snapped one up and it arrived earlier this week. After using it in my sock feet for a couple of days, I must say it really does help relieve a bit of pressure. So I went back to the site to see if there were any left and whether the promotion still worked. It did, so I ordered a second one. My plan is to have one permanently between the sink and stove, so that whether I am washing or cooking, I can have a mat always there. Then the other will go at the end of the kitchen bar--the "prep" area, so that if I am chopping veggies or making lunches, I can always have one to stand on there. An easy, inexpensive bit of assistance!

I traded out my desk chair at work for one made for a shorter person and put a lumbar support pillow in the seat of it. Now there is no chance of my legs "dangling" from the seat and possibly putting pressure on any blood vessels to reduce circulation. In the past, if that happened, I would just adjust position and restore circulation. But today, if that happens, it is almost immediate pain. Let's just try to avoid that entirely.

This is adaptation. These are small adjustments. No matter how long this condition lasts--whether it is months or years or the rest of my life--there are things to do to adjust and to keep moving forward in the tasks we're called to keep doing. Life is still worth the effort.

And I can stand and walk to do almost anything I need or want to do. Running--such as in playing backyard baseball--is still really not an option. I'm sure to stumble and fall. I hope this improves. But if it doesn't, I'm still gratefull.

My perseverance is so small in comparison to others and what they are working through. I think of the Wounded Warriors. I think of those paralyzed in accidents or illnesses. I think of children born with harder hardships than mine.

But on some days, if I'm honest, I still ask: Wasn't it enough already? It seemed like enough already. I'm not whining, but I think it's realistic and a cause for me to look at others with more compassion, no matter what level of challenge each faces: No one really has it easy. To diminish one's burden with a "could be worse" response doesn't actually help encourage them. It may be true that it could be worse, but that doesn't in any way mean it isn't what it is. Lord, help me see them too. Help me see what they're carrying and say, "I know; me too; soldier on--it's worth it." And maybe, if enough knowledge and insight is afforded, also lend a hand. At least my hands and arms are strong and working. There is that.

Let me be singing when the evening comes.

High Hopes and High Places

I suppose I can point back to my belief in "no coincidences."

For more than a year, I've been looking out my kitchen window at the view of Little Pisgah and Bearwallow Mountain and telling myself I will get new hiking shoes, so that climbing those and the other high vistas in this area will be easier to do. I haven't owned hiking shoes in many years, and my sneakers and duck boots don't give too firm a footing for those kinds of inclines, even when my feet are healthy. But I have a love of high places, and I have meant for some time to keep returning to them.

Then this happened. This attack on my spinal cord. This numbness and nerve pain. This lack of coordination. I stumble in the uneven block and gravel walkway from the drive to the house steps. I have to look at my dead feet when I use the stairs to be sure I'm actually stepping onto a tread, up or down. Slippery wood planks after all this rain make me gasp in public--am I on solid ground? I can't actually tell.

The high places seem farther away because of the new situation. But farther away does not mean unreachable.

Last week was the most painful I've had in this experience with transverse myelitis. At times, pain was excruciating. As I passed the four-week mark, I admit, my spirits were not in high places. I had some moments in the pit. Worried. Wondering. Am I strong enough for this kind of chronic pain? What if it never leaves? What if this is what I have to face daily from this point forward? How can I function? I need to provide for my children. I need to be present for my children. I want to keep serving in my church, job, and community. I have a new relationship with a kind and caring man that I would like to progress in. But this pain was all-encompassing, consuming. I would say it "bore into my brain." Maybe that helps you understand what it was like in its relentlessness.

I am hoping that I have turned a corner in the pain department now. It's early. I don't want to be unrealistic. The future in that regard is still uncertain. I have had some better days since that low, however. I am now approaching five weeks in and the broad window for when most transverse myelitis sufferers begin to see relief from pain is between two and 12 weeks--if they are going to have a recovery (and 33%-67% do experience some healing). I'm solidly in the middle of that window, then.

But in the midst of that excruciating pain last week, something popped up that I chose to see as a sign. A sign that I am to work toward reaching those high places again and not let this issue stop me in my tracks, or keep me below the horizon forever.

There was one pair of Merrell women's hiking shoes that I've wanted for this whole last year, to use to reach those high places more readily than I would have in my other options. But hiking shoes are very expensive, and I'm a single mom with a lot of kids and someone always needs shoes or jeans or braces or field trip or retreat fees or something else. So the full retail price tag was just a 100% deterrent, and even though they would pop up as an ad from time to time, I never even clicked on them after the first exploration. I just scrolled past. Until last week.

At the darkest point, the hardest pain, the time when I was watching the clock for the next opportunity to take a prescription opiod painkiller and anti-nausea medicine to get through the hours, those Merrell hiking shoes, in my size, went on sale at REI. Good old REI. I love the store but haven't actually spent money there since I was a single adult with no kids more than two decades ago. But once a member at REI--even if it was two states away and a lifetime ago--always a member at REI. And there were my shoes. On sale. And no small sale either. 70% off retail. My Merrell hikers that I'd been wanting had dropped down into the range I might find for my young teen's shoes at Target.

I really didn't think much about this purchasing decision. I know. I'm an intuitive, not a senser. Everything MEANS something. So I just acted on it. I ordered them. I took it as a sign and a motivator, something to work toward: You WILL reach those high places. You will walk with sure feet again. This is going to be the reminder of that goal, and it's being offered to you at bargain basement prices! If that's not testing of the spirits for a money-saving-mom with dreams, I don't know what is.

The shoes were a tangible representation of my goal to get better, to heal, to regain solid mobility and enough freedom from pain to function in places of joy after challenge.

I bought the shoes. They came today. I will put them out in view instead of in the closet to wait, and I will think about reaching those high places.

Habakkuk 3:19 is on my mind as I do this. For a very long time, it has been one of my favorite verses to cling to, to return to, to hold on to, to let change me.

God, the Lord, is my strength;
He makes my feet like the deer's;
He makes me tread on my high places.

I see double meanings in this verse, especially as it comes out of the Prophets and to our ears, our lives. My ears. My life.

I live in the mountains. High places here are good things. Long-range vistas. Breathtaking imagery. Wide open spaces. Lush vegetation. Freeing, return-to-Eden-like stuff. I have no doubt that to the deer, and to Habakkuk, there are similar parallels of beauty, freedom, GLORY associated with high places.

But not all high places are set apart by us for God's glory. In the Old Testament, the high places were often sites of idol worship. And oh, don't I have my own idols set in high places? Isn't even my own self-sufficiency one of those idols I set in a high place? Do I like to admit I am down, in need, injured, removed or limited in service? I do not. I admit it. Pride, my own superficial definition of myself, the health and active life and "It's REBECCA; she's always on the go" labels are things I thrive on. I put these images on altars in the high places of my life.

But look. Look at what God, the Lord is: HE is my strength. Not my shrines to my mobility and activity and service and efficiency. HE is my strength. And what does he do with those places of idolatry for me? He MAKES ME TREAD ON THEM.

I love this idea that he causes me to stamp out, crush (like he will do, has done, to our ultimate enemy) these fixations of my own. Anything that will take from him his glory in my life, he will remove from me, because he loves me. Because I am his. I can have no other master; no other lover of my soul. So he will cause me to tread on my high places of idolatry that put any semblance of my own strength in view of his work in me, for me. So he and I can have the closeness we're supposed to have, with none of my idols in the way.

Because he loves me.

But because he loves, because HE LOVES ME, he will give me back even higher places, and because he is my strength, he will strengthen my feet. LIKE THE DEER, who traipses cliff and cleft with tiny, sure feet to reach those upper limits. Sure-footedness feels far from me right now. But HE is my strength. It is not out of reach. And when I do reach it again, it won't be the Merrell shoes, but the healing of my Creator and my Savior who gets me there.

I believe it.
I believe he will make me tread (as in trample) the wrong high places and then set me surely to tread (as in walk securely and confidently) the ultimate, glorious, triumphant high places too. And I believe it will be both spiritual and physical. I will see the goodness of the Lord in the land of the living--and that land may just include Bearwallow Mountain and Mt. Pisgah and Little Pisgah and Mitchell and Craggy Pinnacle again. So be it. I'm all for it.

In the meantime, I am seeing some improvement, as I mentioned above. Pain is far less severe. This morning, I took my last of the largest doses of prednisone. I do think it is helping, and I will continue on a 25% smaller dose for the next several weeks. I'm glad to take the dosage down. Prednisone has side effects and I've had several, with nausea and vomiting being the worst, but also bloating, facial swelling, some hair loss, and 2:00am sleeplessness with the munchies involved. It can also cause an increase in blood sugar, so my diet has to be low-carb and carefully monitored. But as long as it is working, I will follow my instructions. The last two days, I have had discomfort but not what I would call intense nerve pain, like it has been. This is a tremendous blessing and makes me hope with some reason behind it that perhaps there is actual healing and not just pain management at play here. (Feel free to pray for my Schwann cells by name. Those guys are on call to make a big difference in my healing, and as my brother says, "Demo day is over. Time to start the rebuilding." Schwann cells are fascinating. They do different duties and miraculously, by their Creator's hand, know when to change jobs. I literally do pray for my Schwann cells.) I can only trust in the dark right now that something good is happening. My feet remain numb, prickly, unstable, but less painful. I think my left leg is less numb. A repeat MRI on or about March 11 should show whether the lesions are less inflamed and stable. We hope to see no new lesions in that scan, and less inflammation than there was in the first one.

But also in the meantime, I am beginning to learn to come down from my pride's high place and ask for the help I need. I need a more stable walkway into my house. This is the current walkway to the back door. It is a single-file line of pavers spaced far apart and uneven with large, loose gravel scattered between. The gravel easily gets kicked up onto the pavers, making even the flat parts rocky soil. I have ordered enough flat pavers and some sand to redo the walk so that it is two pavers wide with no spaces between. A flat surface will make a huge difference for a person who can't feel the bottoms of her feet! As it is, I have stumbled too many times to count--and it's worse if I am carrying something that blocks a clear view of my feet while I'm walking. It's a humbling feeling--always looking down and not up and out into the world, and still being unstable! My good man has offered to help replace the walk on Saturday morning. My good friend Jordan says he thinks it's highly possibly he can come around to help as well. I plan to ask my church if maybe one or two other men with shovels, a level, GLOVES (by all means, GLOVES), and a servant's heart would help as well. It's a little under 60 square feet, when all is done (2' wide by about 27 feet long), and I think 3-4 guys could probably make quick work of the walk--which would be a relief.

Finally, in that area of humility, I will say that I have been blessed, relieved, helped, and delighted with the meal train that my dear Ashley set up for us, and for every person who has so lovingly created these beautiful, nourishing, and satisfying meals. I really didn't know how much a meal train could benefit, but under these circumstances it has been a life saver. It is still going on at a rate of 2-3 meals per week, and I am humbly asking that if it is possible to keep it going until right after my 3/11 checkup and MRI, it would bless us still. Self-sufficiency can take its rightful place for a time. Standing on my feet at dinner time HURTS, and I really can't even yet imagine navigating a grocery store for a big shopping trip yet. I can get in and out for fill-ins for breakfasts and lunches, but I just don't think I can yet put in the time for a full, family-sized grocery trip yet. Soon, though. Soon.

So that is my humble but hopefilled update.
And these are my new hiking shoes.

I wish I could tell you how they feel. I can't, because I can't feel my feet. But maybe that too will come one day soon. They'll still serve as an inspiration to keep hope and work hard and obey instructions and BE STILL ENOUGH AT TIMES TO KNOW THAT HE IS GOD AND I AM NOT. And I'll post pics again when I wear them to tread on some more high places. Or maybe you'll come along.