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.

Everything You Learned in PT is Wrong (Feb.10)

10 Feb

Or, “I can dramatically spin my head and walk and talk all at once again. No need to simmer down.”

I am still over all very tired and low energy. This makes it tricky to point out areas of improvement, because I know I am improving, just so tired.

On Sunday I was able to share the book of James with a local church, followed by a brief workshop. James is about 18 minutes long and I was able to pace appropriately, turn my head however I liked, and crossover my feet to side step. I did all of this using a cane. My balance is very much improved since my time in hospital, but my fatigue is so strong that I needed the cane for something to lean on. For the workshop portion I was seated or leaning on a skinny podium.

My feet, legs, and torso are still numb, but less so. I still cannot manage to wear any of my slip on shoes, as they just slip off. Thankfully, we are still in boot season, so my sense of fashion hasn’t been compromised.

The Lhermitte’s sign symptom that I have been experiencing daily suddenly stopped this past Sunday, returning on Monday, though very faint.

The pain in my right side ribcage is still there, but only becomes in need of addressing if I have been over doing it with activity.

My next big planned outing is that I intend to work my shift as a supervisor at One Day Academy this Wednesday. I will be doing all my supervising from a seated position, but hope to be there for the full day. I am still not driving.

Before I go, I will leave you with this very interesting observation:

When I returned from Russia in 2012, I found that heat no longer had any negative effect on me, any more so than a healthy person. Even as I am experiencing this flare, I remain unbothered by heat. I’ve had many hot baths to relieve my spasm pains and am very glad about that.

 

State of the Body Address (Feb 4)

4 Feb

It has been one week since I started high dose steroids in the hospital and four days since I finished final dose and was discharged. My symptoms remain unchanged. This is, of course, a positive result and signals that the steroids at the very least halted the flare. I see my neurologist in one month, at which point he expects to see improvement.

I don’t anticipate updating more than once a week, or as changes develop. For this post I am going to list my current symptoms for a baseline. While the disability from this flare came on rapidly in January 2020, the fatigue (physical and cognitive) had crept in as a fog sometime in the Fall of 2019.

I have a “remarkable” lesion at the top of my thoracic spine that is causing the symptoms I am most aware of. There are three lesions on my brain, but they are just loitering for all I know, because they did not get the eyebrow raised “remarkable” comment from neurologist.

While I can walk, my feet feel like I am wearing six inch platform shoes, with my toes hanging off the edge. I have not driven for three weeks, because I cannot feel the pedal. My walking gait without a cane looks something like a toddler.

My balance is not terrible, but not great. I cannot easily turn my head to the side while walking in a different direction. I like to turn my head dramatically like I am a 1940s screen queen. This has been difficult.

The numbness in  my feet goes all the way though my legs at to my waist. This has included some bladder and bowel involvement (primarily constipation and bladder urgency.) We are not treating these symptoms with any intervention beyond OTC meds, as it is hoped it clears in a month. There are further options if it continues.

The numbness in my waist feels tight like a corset. It is tighter on my right side, where it feels like it gathers my ribs into a scrunched knot. This sensation is because of spasms and is the hub of most any pain I report. I have been prescribed a muscle relaxer for this and feel better when medicated, though I only need a half dose.

My neck has the immediate response of Lhermmites sign when I flex forward, drawing my chin to my chest. This is an electrical shock sensation that shoots throughout my body and down my spine. This is considered a classic sign of MS. It is one that I experienced off and on over the past 7 years, but now experience with regularity.

As I mentioned in an earlier post, I had intentions of going to Abilene Christian University to share the book of James with their gathered student body at chapel. This was on my calendar for a few months and I was determined to go no matter what. In a twist of fate, the weather for that day turned super freezing and words like “thunder sleet” got tossed around. I was given the option to back out, given the possibility of being cancelled last minute after a three hour drive to be there. I took the exit. I hope to reschedule. It was going to be a big stretch to go and likely would have added time to my recovery, so I am bummed, but not entirely.

I still have plans to share James with a local church this coming Sunday, followed by an hour or so of workshop time. If I am still in the same condition Sunday as I am today, Tuesday, I will be sharing James while using a cane and then leading the workshop from a seat.

Thank you for your prayers, comments, and encouragement. This time is not without its stabbing moments of anxiety and all aloneness feelings. I feel like I must share what’s going on especially for my fellow HSCT patients and prayer warriors, even as sharing only adds to the anxious feeling. You all make it easy. See you next week!

 

 

 

Faith Doesn’t grow on Sunny Days

30 Jan

I heard a mediocre joke a few years ago. It starts with a man and woman getting married. After the wedding, days, weeks, and years went by where the man did not say, “I love you” to his wife. She finally complained and he says, “I told you on our wedding day that I love you and I’ll let you know if anything changes. So far, so good.”

It’s been 7 years and I haven’t had much to say because nothing changed. To be frank I struggled a bit with having my story completely out there, even as I was pleased to have shared it. I still struggle with it. It’s hard being a drama queen.

And so, here I am with news of change. I know I’m a wordy lady, so here’s your TL;DR- Amy is going to be okay.

Shortly after the school year started I noticed that I was feeling unusually fatigued. My GP diagnosed low iron and B12. I started supplements and felt some better, but still taking naps often. I had an easy to ignore nagging thought that I was relapsing. It was easy to ignore because I am the type who likes to ignore important and scary issues. Just me?

On Tuesday, January 13, I woke up and my right foot was numb, as though it had fallen asleep. I was able to walk on it and went to the kitchen for coffee, noticing that the numbness was not letting up. Over the past seven years, it has not been unusual to have a symptom pop up for a day or so, like if I had a fever or hadn’t had good sleep. Friends, I seriously had a thousand reason on file in my head for why this numbness was not what it looked like.

On Wednesday, it was still numb, and it had crept into my calf and covered my thigh by that evening. I acknowledged that it was probably what it looked like, but froze about what to do. My neurologist has retired and I retired with him. I was going to have to find a neurologist who wouldn’t take one look at me and roll their eyes because I chased a treatment I found on Google and then stopped seeing doctors when I convinced myself I felt better due to an amazing placebo effect.

On Thursday, the numbness was now in my left foot. What I had on my hands was a slow moving emergency. I call it slow moving like a hurricane -v-tornado. A hurricane gives you time to settle your matters and make arrangements before it destroys everything, while a tornado needs immediate attention. And so, I spent the next week getting all my ducks in a row, still hoping that it would clear up on its own.

On Monday, January 20, I called the neurologist that my neurologist gave my records to when he retired. I told them my story and was given an appointment of January 28. I called every day after that to see if I could get in sooner. I finally got scheduled for Monday, January 27.

On Sunday, I went to Yelp and read all the reviews about this doctor. “She’s terrible.” “Dismissive.” “I wish I could give none stars.” By this time the numbness was fully in my legs and up my waist like a corset. I felt out of steam, like I had lost every bit of fight in me. I looked at those Yelp reviews and just knew that I’d get a long sigh and an eye roll. Since I could technically walk, she might dismiss me altogether.

I dedicated the whole of Sunday night to meditating on every horrible thing that could happen. I was playing an endless game of “Choose Your Own Adventure” in my head and none of the choices saw me just going back to 2019 condition.

On Monday morning I woke up with a sick dread in my gut. As I laid in bed and cried a little, I said a prayer. My many hours of worry on a scale, and that tiny prayer had more weight and tipped the whole thing. I prayed for favor. I told God that I needed His same hand of favor that I saw in 2012, when everything rolled out effortlessly to get me to Russia, when my results were dramatic, when I was able to walk away from that struggle. Favor, God, give me favor.

We get to the neurologist’s office and I was able to brush off anxiety, knowing that I had turned it over to God. Whatever the result, I knew it would be in my favor and I was going to be fine. I waited in the waiting room for about ten minutes and was called back. The doctor was in the exam room with me ten minutes after that. She looked over my MRI records from 2012, Dr.Fedorenko’s notes about my HSCT procedure and results. The documents I was showing her said that in 2012 I was in a wheelchair, and then not.

She takes off her glasses, looks at me, and says, “You were in remission for 7 years? That’s incredible. I’ve heard of stem cells, but not much about HSCT.”

I almost cried.

She escorted me into another exam room where she did a full neuro exam. At the end she says, “It is very clear that you are relapsing and it looks like it’s moving quickly. I want to treat this like an emergency without the emergency room.” And then she makes phone calls to a different hospital, with a doctor she likes and tells me to go there and get admitted and they’ll do an MRI and start steroids.

I did cry.

Before I left we talked for a bit and I told her about my vague understanding of what possible choices I might have for post HSCT treatment. She says that she doesn’t know anything about it, but that it obviously worked, so she encouraged me to find a neurologist who might know more, even as she assured me she was going to educate herself and would be willing to try anything that was approved here in America.

Oh, you know I’m writing her a dandy of a Yelp review.

At the hospital I was quickly moved to the MRI for a full scale 2 hour 45 minute scan of my brain, upper spine, and lower spine. It was late when we wrapped up, so I had to wait until the next day for results.

Early the next morning a 16 year old boy came in my room and introduced himself as the on call neurologist, and also an MS specialist who almost exclusively treats MS. He had read my doctor’s note and had thoughts.

“7 years and 2 months of remission from a progressive state? That is amazing.”

The more he talked, the more I realized that he was not 16, but that I am old. He told me that I had three enhancing lesions on my brain and one large enhancing lesion right at the bottom of my upper spine. This would be the one causing my waist down numbness.

He told me that he did not want to discuss long term treatment until we got this under control. My steroids were started that day. After he left, I emailed Dr. Fedorenko to let him know and to get his thoughts. I had already told him that I was being seen and he told me he was withholding opinion until he got my MRI result.

The response took a minute to wrap my head around. His experience has told him that patients who relapse after a lengthy remission often respond very well to steroids and return to remission. My 2012 bone marrow transplant was still in play. His advice was to get the steroids and then have another MRI in 3 months, during which he expected the lesions would no longer enhance and all would calm down. If they were still enhancing, he said he would advise I start immunotherapy, and if that didn’t work, I could always do another round of HSCT. Though, he stressed that he did not feel it would be necessary.

Doogie Houser shows up the next morning and I tell him what Dr. Fedorenko said. “That makes sense. I can do that. Your insurance company might disagree, but I can just write them a letter.”

He ordered physical therapy for me and I was seen by a series of therapists over my stay who focused all their attention on getting me through this rough patch and over into the doctor’s predicted remission after a month or so. I told all who were treating me that I had two important speaking engagements next week and the whole team worked to educate me about how to rest during a flare. It took a team to convince me to rest.

One of my engagements is to share the book of James on Wednesday, Feb. 5 for chapel at ACU. The PTs walked me up and down the hall on a gait belt while I tried to recite James. It got better as they would lay  me down to do treatments on my movement and then walk me, do a treatment, then walk me, rest, repeat. Though it got some better all my PTs agreed I should use a cane. Neurologist’s opinion was that I should use a wheelchair for anything over a hundred yards, and a cane while standing for no more than a half hour or so. He advised me to sit for the workshop teaching portion.

I am home now from the hospital, buzzing from high dose steroids and information overload. The plan now is that I will be low key and focus solely on these next two speaking events. My church, my family, my One Day Academy co-workers, my team of doctors and therapists have me all lined up to be able to have such tunnel vision. This next week is not about getting better because I am not expected to get better. Both Dr. Fedorenko and my doctor here believe it will take some time, but that I should recover.

In three weeks I will return to the neurologist. He expects me to look much better. He told me yesterday morning with a shrug at discharge that he really didn’t expect he’d see me much after my three month MRI.

In summary, the best hematologist in Russia and the best possible neurologist in America are collaborating on my case and agree that it has a very likely good prognosis. I am in pretty rough shape right now, but my brain is swimming in James. I am counting it all joy when I face trials of various kinds because I know that the testing of my faith produces steadfastness and I must let steadfastness have its full effect that I may be perfect and complete, lacking nothing.

Thank you for reading this far and thank you for praying me through. I love you all. Mean it.