It started with a niggling, a little scratch in my throat, the slightest bit of congestion in my nose – my first virus since transplant in February 2022 – one full year virus free. It was a very small virus, nothing at all, barely noticeable. But it tipped my physiologic balance, and I ended up in the emergency room on a Saturday with a UTI allowed to thrive in a disrupted immune system.
The round of antibiotics used to suppress the UTI, to the best of our understanding, shifted my digestive tract into dysbiosis – all the tiny bacteria in my gut, the carefully balanced harmonious communities, lost their song.
Slow motility (constipation by a gentler name) combined with the disrupted microbiome led to SIBO (small intestinal bacterial overgrowth). This is a condition where the bacteria that normally reside, happily and helpfully, in the large intestine get translocated up into the small intestine where they don’t belong. There, the bacteria feast – happy little creatures farting out their metabolic byproducts in someone else’s house. My whole abdomen became bloated and distended, a taut balloon, a pregnant belly with no child joy to offset the suffering. My gut in turmoil triggered my MS symptoms into overdrive – muscle spasms and off-the-charts spasticity.
Here are some quotes from my daily writing practice:
“Who knew that muscles around the torso could create a hug so tight you didn’t want to love anymore?”
“Those of us with MS learn to tolerate by inches by centimeters by millimeters. We normalize discomfort. We normalize living with it.”
“It could be wild rage trying to find its way out. Or maybe wild grief throwing around like a hurricane inside of a small room with no vent out for the circulating wind.”
“It’s the smallest thing – sitting up in the morning, putting my legs and my feet to the floor, considering standing with their persistent rebellion. No one can see it, but it can feel it like an elephant sitting on top of me – that strong, that immense. It looks like nothing from the outside. It’s the smallest thing to others, but it’s an elephant to me.”
In trying to sort this out I have worked with my PCP and undergone colonoscopy prep without the colonoscopy -twice! – trying to empty out the meters of small and large intestine. When that didn’t work, I was referred to a neuro-gastroenterologist – fancy, big title. He was a sweet guy, on the young side, who always wears poop emoji socks when he sees patients. Cute.
By the time I met with him, my PCP and I felt confident that I had SIBO. He agreed that I had “dysbiosis” and prescribed rifaximin, an antibiotic that very specifically targets the bacteria in the small intestine and nowhere else, which insurance doesn’t cover, and is incredibly hard to get. I happened to mention this to a friend and neighbor who had gone through SIBO, and she said, “oh I have a bunch left over that you can have”. Random and lovely – and saved me $2500.
My frustration with the gastro doc was that he didn’t listen when I said (based on my extensive research and consistent with my symptoms) that I believe I have the form of SIBO known as “methane dominant” where I would need a second antibiotic (Neomycin) to be effective at eradicating the bacteria. He said that particular antibiotic wasn’t available due to a national shortage (turns out, not true). He also did not do the official SIBO testing (an involved three-hour breath test process) which would have confirmed (or ruled out) the methane-dominate variety.
To speed this story up, I did the antibiotics, and also reached out to my MS naturopath who referred me to a different naturopath in his practice with a lot of experience with SIBO. She ordered the breath test. which came back with a very clear SIBO positive, specifically methane dominant. The naturopath ordered another round of rifaximin and added it to the Neomycin which, it turns out, was very easy to get. I have now, as of yesterday, completed this cycle of treating this bacterial beast.
Right now, as I write this, I am filled with hope and excitement.
As the antibiotics started to do their work my energy has come back to a level I have not felt since May of 2022. My body is loosening up, the spasticity is so much better that I can’t quite believe I have lived as long I have this impacted. It’s possible that SIBO has been here at a low level for a lot longer than this last February. My body and life are coming back online.
This round of treatment has not taken it all away, I can tell it’s not gone. I’m doing a second breath test today to figure out where I am now and will be on a very specific diet until those results come back, at which point we will consider next steps. The image I shared above shows the four main treatment pathways and we will figure out which one is next. It’s a long haul, but I’m totally fine with that because I can tell it is 100% worth it.
In the meantime, I bumped into a spoken word poet/artist, Andrea Gibson, who brought me to tears, made me smile, reverberated inside me as someone who has found a clear and loving voice inside of a very difficult personal world. Someone who has found the clearest connection to love in the face of death that I’ve ever encountered.
The day after bumping into Andrea Gibson, I heard a podcast with the poet/essayist Ross Gay whose focus is all about joy and delight. I’m just beginning to read his books, but his voice is infectious and a delight in its own right. His work is all about paying attention. I am learning that joy and delight can look like tears, can touch something that breaks open and bleeds.
So, I am reading and listening to poetry and audio books, re-reading my favorite Mary Oliver collection, reading Pema Chodron – digging into Buddhist philosophy, writing, meditating, researching, using music therapy to aid my PT, seeing a counselor. I have tried supplements, tried gut-directed hypnotherapy, tried to find delight, joy, and gratitude in the world, no stone unturned. Looking for ways to be at peace with pain if it doesn’t leave and doing everything in my power to usher it out.
Kira is home (along with her boyfriend Zac) for the summer, working on the farm across the street and I am soaking up this time with them – perhaps the last stint of living at home.
Kira and Rosie on the farm
What I want to tell you is that I’m still here. I’m still on the riverbank with my toe in the water, soaking up life, connected to it enough. Craving a deeper dive, but proud that I’ve got that toe in at least. I can feel the vibrancy of life, I can still be brought to tears by a piece of poetry.
Today is the one-year anniversary of the birth of my new immune system, the day they put my stem cells back in my body to begin the process of rebuilding an infrastructure free of the memory of MS, hopefully. So, I thought I better get my butt in gear and write!
February 14, 2022 (a new meaning to Valentine’s Day) was the day they reintroduced my stem cells. February 14, 2023, my 1-year “stemmie birthday´. Also the day Kira and Zac leave on a three month trip to Southeast Asia. Grand adventures on both counts!
I also want to say a big and beautiful “happy birthday” to Kira who turned 24 on February 8th.
This post is playing catch up, so it is a long one…
Month 10
Ditto Month 9 – it sucked.
Month 11
The summer I turned 16, my grandmother took me on a three-week trip to France. We boarded a plane leaving from Seattle and landed at Charles de Gaulle airport in Paris and while the Airport was majestic, the surrounding part of the city was grittier than I expected Europe to look. I remember being nervous that Europe, and Paris in particular, had been overhyped. As we arrived in Paris proper, the majestic was restored many times over.
We spent a packed and beautiful week in Paris where we met up with my uncle Rob – a seasoned expat who spoke fluent French. Together, they took me to a sweet little restaurant, Au Franc Pinot on Île de la Cité, to celebrate my 16th birthday. To get to our table we had to walk down three flights of stairs underground. My memory tells me the walls were earthen – moving and alive – with carved out shelves for candles. As we descended deeper and deeper into the underground bowels of Paris, I expected our waiter to be otherworldly or at least suspect. That dinner was the first time I tasted (or had even heard of) foie gras – which I enjoyed tremendously and chased down with my first Kir Royale.
The morning after my birthday dinner, my grandmother got up early, before I woke, and bought a watercolor painting from a street vendor. It depicted the exact corner with the restaurant where we had celebrated my birthday. I carefully carried that painting through the rest of our trip. I have brought it with me every place I have lived since – Eugene, Boston, New York, Seattle, and now here to Indianola.
I fell in love with Monet on that trip. We had bags of flour thrown on us from a bridge over the Seine while we rode a Bateaux Mouches. We stayed up late and walked the Paris streets, ate dinner at street cafés, toured museums including the Louvre where I was disappointed by the Mona Lisa – so small. Because we were in Europe, my grandmother didn’t care that I was under 21 and I had wine, beer, and champagne freely.
Bateaux Mouches
We drove through Arles, Avignon, and St. Tropez where we shopped, ate, and explored. With the help of my uncle, we enjoyed a week on a barge through the burgundy region of France – Dijon to Beaune. I was closer, by far, to the age of the crew than I was to the other guests, but it was magical. We took a horseback ride, toured chateaus, ate the most amazing food, and tried without success to take a hot air balloon ride – the weather conditions were sadly never right.
Me and the crew on “La Litote”Crew on “La Litote”, bestill my 16-yr-old heart!Bill from Bath, my biggest crush!
At the end of that boat tour we visited a wine cellar, Marche Aux Vins – a multi-floored cavern with candle sconces on the walls and rows and rows of oak barrels. We were not skilled at the spitting part of wine tasting, which was probably their plan all along, and were more than tipsy by the time we reached the “purchasing room”. My grandmother bought multiple crates of wine to be shipped home and I bought a couple of bottles to take home with my teenage self.
Wine tasting “cup” from Marche Aux Vins.
I share this now because my grandmother passed on Dec 12 at age 96. She was surrounded by family – her daughter and son In-law, two of her grandchildren and their spouses, and a squirrel’s nest of great grandchildren. She was ready and her passing was without pain.
The memories of that trip to France are vivid for me and I know they were vivid for her. Over the years and decades since then, we talked about them often. In October of this year when I visited her, almost 40 years since the trip, we still talked about it as if it was yesterday.
Last night as I was walking downstairs I looked at photographs of her that hang on our stairwell wall and it hit me that I’m the only one who still holds those memories. My co-author of those stories is no longer here. They only live inside me now and I miss her. It reminded me of what she said when my grandfather passed, at his memorial. She shared that the thing she missed most was having a person in her life who knew all the stories. The stories of their marriage, good and bad, the stories of raising their children, the stories of their travels, of their friends, the houses they’d lived in, the meals they’d shared, the decisions they’d made — the minutiae of life. I get that now.
This morning is the misty gray that comes with living in the Pacific Northwest near the ocean. It is quiet, my house is empty. I will offer this cliché… It’s been a long time since my last blog post. I skipped right over a month 10 and find myself now at month 11.
Between my last post and now it has been rough. My spasticity was so intense that I was in bed a lot, not really functioning. It was a dark time which I recognize now correlates, somewhat symbolically, with the darkest days of the year and the stress of the holidays. I lost all interest in writing.
Over the past few weeks, it seems that medication management is starting to work. I feel connected again to the world. I can dream about the future, do physical therapy to get stronger, comfortably participate in social activities. I can sit at the table and play games.
I am not sure what exactly is different. I have tried these medication combinations before with little effect, but now they seem to be making difference. Some days are still rough – two days ago I was in bed all day – some days I feel relatively effortless. Most days are in between.
I have been able to start my day feeling that I can move things forward; that I can contribute. I have more capacity to participate. I am taking on volunteer opportunities in my community and connecting more with friends for conversations and catching up, I feel like I’ve lost time with people.
As I close in on the one-year mark I’m having difficulty wrapping my head around the fact that that much time has passed. In a few days it will be a year since I stepped on the plane to Mexico. Am I better? Did HSCT work for me? More on this at the actual one-year post…
Month 12 – 1 year
Our crazy cohort
Where am I at the one-year mark? Cautiously hopeful. Still in pain but working on it. Still experiencing loads of spasticity but working on it. I would say I’m in the middle of things. I’m on the upward arc from the nadir, I’ve seen the darker parts and I feel they are behind me. Am I back to my baseline? Not yet. Only because my spasticity is still higher and different than before treatment. If that were to go away, I’d be back to baseline or better. My bladder is better, my fatigue is better when I’m not medicated to high heaven. My mood is balanced. Some days are still hard, but those days are fewer. More days are good.
I’m feeling optimistic. I have this sense that there is a strong, fluid moving skeleton underneath a façade of spasticity, waiting to emerge. I feel strong inside. In those rare moments where my spasticity eases, that strong understructure comes forward and makes itself known enough that I can trust it’s there. I feel stronger and more centered than I did in the dark of winter.
I continue to turn over all stones of therapies, modalities, and medications. Under one stone, I found that Swedish Medical Center, here in Seattle, offers a free music therapy zoom group every Wednesday morning. What a fun discovery! It is both meditation and movement therapy – using music in connection with movement and emotional exploration. It connects the mind and the body in a way that makes sense to me. It is both science and heart.
Am I done? Not yet. Am I hopeful? Mostly. Do I regret treatment? Not yet. I think if this spasticity does not relent I might wonder if I did the right thing, but it is still early for that. I don’t think I will regret this even if that doesn’t happen. There’s no way to know if the spasticity wouldn’t have happened anyway. Also, if I hadn’t tried HSCT I would’ve always wondered. And since there are no other options, the risk wasn’t really that great.
I’m feeling at peace. I am starting to have more in my life than just my MS, though it does still take up time and thinking. It will continue to be my “job” for the rest of my life most likely.
So, what am I doing? Learning to use Spotify and Photoshop, volunteering with my local community, reading, loads of physical therapy, counseling, music therapy, writing, spending time with my family, supporting my smaller circle of my intentional community (wise acres), making granola and yogurt – I’m staying busy.
I feel on the cusp of something, some internal revelation maybe, some sort of quantum leap. I’m open. We shall see what the next year holds. Happy one year “birthday” to me. If you are still here, thank you for reading along.
“Birthday” card from Kira.
Symptom Update
Walking/legs/spasticity:
This has been my focus since the start of recovery. I’ve mostly covered this above. It is still rough, still very much present, but significantly more managed than before. I am motivated and energized to do physical work every day. Over the last few months, it has been difficult-to-impossible to do simple exercises, even though I was motivated to do so. Now I get to be creative, enjoy my body more, I get to build. That ability to build gives me hope. I am willing to do the hard work that needs doing if I know things are moving forward. Working with my Physician, I am planning to attempt Botox again on my leg to see if we can impact the correct muscles this time.
Arm/hand:
I have slowly begun to do work here after ignoring it for such a long time, this work is hard – the hardest of all the work I do. I am using a contraption (Saebo Reach), prescribed to me by my occupational therapist (OT) years ago. It was designed for stroke survivors to reduce their arm spasticity and regain function through neuroplasticity. I recently started using another product from Saebo – the Estim Micro, that I wear at night along with the Saebo Stretch the I have had for years. These therapies are not a quick fix. They are awkward and cumbersome, but a trust that over time and with a ton of committed intention, my arm and hand can improve.
Saebo ReachSaebo Estim MicroSaebo Stretch
Bladder:
My bladder function continues to be mostly normal, thankfully. I can live like this forever, even if it isn’t perfect.
Bowel:
Trigger warning: skip to the next section if you are squeamish about scatological things.
By and large, my bowel function is normal. Regular, constipation managed, not too loose, in the sweet spot. However, I recently had an episode that many people with MS will relate to. I had been increasing my magnesium dose to see what my body could tolerate – this can lead to loose stool. I drove to a medical appointment, got out of my car, and preceded to unload my walker to assist me getting into the building. As I am bent over to lift the walker, I felt a sudden bowel movement urgency and simultaneously felt that my anal sphincter was unable to hold in the impending poop. It just slipped out into my underpants. Thankfully, I am perpetually early to appointments. I had time to clean up.
I entered the facility and went directly to the bathroom. I took off my shoes, pants, and then carefully took off my underwear. Thankfully it had been contained and my pants were spared. But oh, what a “shit show”! And, what a cleanup! Scads of toilet paper, hand towels, and huffing and puffing before I was “shit free”. I flushed the toilet paper, put the hand towels and my underwear in the garbage bag, removed the garbage bag from the container and tied it shut, put my pants and shoes back on, and went to check in. Embarrassing, humiliating.
I have had a small handful (thankfully) of moments like this over the last 15 years, but this was by far the worst. It reminded me that there is still some MS vulnerability in this area. Note to self, back off the magnesium.
Hair:
Still in the awkward grow out phase. My hair continues to grow up before it turns downward. Still curious and patient.
While my MS fatigue continues to be at bay, the combination of medications that I am on have fatigue as a side effect, so we’re playing with different medications to find a combination with the least downsides.
Medications
I have a strong drive to be on as little medication as possible. I think it is a fear of polypharmacy, learned in graduate school. Too many medications = bad things. I reassure myself that my underlying cardiac health is strong, my kidneys are working well, my pulmonary system and liver are healthy. I don’t have an issue with blood sugar regulation. So maybe I’m less at risk than I think.
I don’t plan to rock the boat, even though it is my impulse to wean off medications that I don’t know concretely are working. Spasticity is there underneath the medication like the proverbial sleeping tiger. It could make itself known if provoked.
Current meditation cocktail:
Baclofen: Maximum dose – 20 mg, 4x/day.
Lyrica (Pregambalin): 150mg, 2x/day, 75mg 2x/day. This is a medication that can be used interchangeably with gabapentin. It is metabolized somewhat differently and is known to have a gentler side effect profile. I am two weeks into this, and the jury is still out as to whether or not my fatigue is better with this.
Tramadol: I have been down to 25 mg at night and one night I used none. That night I slept very poorly and had a rough day emotionally. Still sorting this out. I don’t like being on an opioid, but it makes a difference with sleep and weaning off, even at this very low dose, is impactful.
Duloxetine (Cymbalta): I have been on this for a little over two weeks at a moderate dose. This is an antidepressant that has been shown to have beneficial impacts on pain.
“Duloxetine is also used to treat pain and tingling caused by diabetic neuropathy (damage to nerves that can develop in people who have diabetes) in adults and fibromyalgia (a long-lasting condition that may cause pain, muscle stiffness and tenderness, tiredness, and difficulty falling asleep or staying asleep) in adults and children 13 years of age and older. It is also used to treat ongoing bone or muscle pain such as lower back pain or osteoarthritis (joint pain or stiffness that may worsen over time) in adults. Duloxetine is in a class of medications called selective serotonin and norepinephrine reuptake inhibitors (SNRIs). It works by increasing the amounts of serotonin and norepinephrine, natural substances in the brain that help maintain mental balance and stop the movement of pain signals in the brain.” Source: https://medlineplus.gov/druginfo/meds/a604030.html
The idea here is that it can increase my pain threshold, so I am less triggered by pain as a source of my spasticity. It may replace Tramadol to help me sleep the night, and, as a side bonus, it may give me an overall sense of well-being. I am interested to see if this might be beneficial. Not noticing anything yet as relates to decrease pain, but I do believe it may be having a negative impact on fatigue during the day as well as some blurry vision
Cannibis: I am currently only doing this at night to help me sleep. During the day it is inconsistent and its benefit to spasticity and consistent in making me feel high, so I don’t use it very often.
Seven months in, more than half a year since treatment.
I am on Facebook groups related to HSCT: HSCT in Mexico, HSCT in Russia, HSCT in general. The posts in these groups are mostly people considering HSCT at the beginning of the process. They are in the questioning phase, trying to get information, looking for certainty and guarantees where there are none. How much does it cost? What should I bring? Where is the research? Will it work for my specific snowflake of symptoms and diagnosis? How many people had it improve their walking/pain/fatigue…? For how many people did this not work? Did you regret it? Reaching for hope and afraid of the future no matter which choice they make.
Many will never make it happen – because of fear, because of money, because of family demands, because it just isn’t right, because they are not willing to face disappointment, etc.. I was there, I remember how that felt. I had all the same questions, though I did do a better job of searching the page history before asking a question that had already been asked over and over. I trolled the comment threads. I read through the files. I dug up the research – less research than I wished there was. I wanted stone-cold guarantees and clarity. I ultimately had to find my way to make the choice inside the discomfort of ambivalence.
And then I did it. I went to Mexico. I spent a full month there. I went through treatment that was simultaneously hard and brief. I spent the money. It is done, in the rearview mirror. Now the calendar is back to spinning forward faster and faster and when I look in that rearview mirror, the memory of that time is fading fast.
After I got home, I followed the blogs, private Facebook groups, and Instagram pages of people who were in the cohort right behind me. I paid close attention to their journeys, and I had personal connections to some. The next month came, and I paid a little less attention, the next month even less. Now I am no longer following the stories. I pop into the FB groups of people asking the questions at the beginning and answer things where I can, where others haven’t already answered the same questions a million times over.
I am currently in a Facebook group of people who have completed the treatment with the questions we all ask now. How long did you feel this way? When did things change for you? How long was your roller coaster? What did you do to get through it? We are all looking for stories that match ours, for a string to hold onto out of the maze. There are many for whom this time is now far in the rearview mirror. They pop in less and less to offer stories and advice. For now, I am of the ones asking the questions, seeking stories that match my snowflakes self. There will come a time when this phase is in the rearview mirror for me as well.
Legs/walking:
These days I am feeling stuck in pain. Spasticity is a bitch. It seems to be getting harder, even though I felt like it was as hard as it could get already. I hope, I trust. I hope, I trust. I hope, I trust? that this is just a tunnel to get through. I have to believe that. These are still early days, 7 months into a recovery arc that lasts up to 24 months for some. However, when I live in this body day by day, each day can feel eternal and the next seven months inconceivable.
Occasionally there are moments where I feel like I could dance. These moments come out of nowhere. I don’t know what causes them and I don’t know how to re-create them. But they arrive and give me hope; if my body can do this at all, it’s capable of doing this more. The connections aren’t lost. The structure, the skeleton of movement, is there waiting to be released. These teaser moments are a gift. Water in the desert. They take my breath away. They are joyful. They are too brief.
In the meantime I continue to do physical therapy, massage therapy, cardiovascular exercise to the best I can, and the MSgym. My goal, my mission, is to keep that skeletal under structure strong and resilient for when the spasticity eventually subsides.
The Mollii Suit
A woman from the UK, who is about two months behind me and dealing with the same degree of spasticity/spasms, recently posted a photograph of herself in what looks like a wet suit.
The Mollii Suit
It turns out it is a rehabilitation apparatus full of electrical impulses, “functional electrical stimulation”, called the Mollii Suit.
“What is the Mollii Suit?
The Mollii Suit (formerly Elektrodress) is a functional garment that consists of a pair of trousers, a jacket and a detachable control unit which sends electrical signals to the user via electrodes on the inside of the garment. Mollii is an assistive device that people with muscle stiffness (spasticity) or other forms of motor disability can use in their home environment. It can help to reduce undesired reflexes and stiffness, thus enabling an improved posture, range of motion and functional ability. It can also reduce certain types of pain and improve sleep patterns.
How does it work?
The suit has 58 electrodes which can be combined in various ways. Mollii has a control unit which is individually programmed for each user. The person prescribing Mollii uses a computer program to adapt the active electrodes and the intensity (which muscles are to be activated by means of current). The settings are then saved in the Mollii control unit making it simple for the device to be used at home. Mollii uses low level electric current to produce basic tension in the musculature. The current stimulates the antagonist to the spastic muscle. If, for example, the biceps is spastic, the tricep is stimulated which in turn makes the biceps relax. Relaxing the muscle enables active movement and a gradual improvement in function. The physiological mechanism is called reciprocal inhibition.
Who can benefit from using it?
Mollii can be used by adults and children with neurological conditions such as multiple sclerosis, cerebral palsy, acquired brain damage, spinal cord injury and stroke. Mollii provides tailored rehabilitation in the form of a garment with electrotherapy programmed according to the individual’s requirements.”
This woman reported that after a short time wearing the suit it greatly relieved her spasming. The relief doesn’t last forever, but it is meaningful relief that can be repeated. This suit is not available in the fucking US because of the fucking FDA. Even in the UK, on the NHS, I don’t believe it is free. At this point, if it worked, I wouldn’t care if it costs something. I want this suit.
Arms/hands:
I’m still not putting my focus here because the spasticity in my legs and the pain in my hips are so on fire. Someone in my online physical therapy group mentioned she noticed she was deferring to her stronger hand/arm because things were getting harder with her affected arm. Because the brain reinforces what you do it every day, through neuroplasticity, she was making it a practice to embrace the struggle and use her challenged arm even though it made things slower and more difficult. Use it or lose it. Challenge accepted.
Fatigue:
Fatigue continues to not be an issue, at least not MS fatigue. I can feel exhausted when my muscles contract all the time, but that is different and hopefully solvable. I don’t have hours or entire days where I just have to lie down and take a nap for no apparent reason like I used to. I’ll take the win.
Bladder:
Ups and downs here. I’m noticing a correlation between increased overall spasticity and increased urgency. Mostly this isn’t a problem. I no longer worry about being out somewhere and having to find a bathroom quickly.
Hair:
A picture is worth the proverbial 1000 words. I will add some words, however. I am reaching the uncomfortable part of growing out one’s hair. Decisions need to be made – stay the course through the awkward growing out phase, or cut it short again and never know what the future could hold. Given how tightly curled my hair is right now, I imagine it will be going up in all directions, for a while, before changing tack and heading south under the weight of gravity. My curiosity for what it will look like after chemo is keeping me from cutting it even though it is so easy short, the practical choice certainly.
Medication:
A lot going on in this category this month. I continue to be on Baclofen and gabapentin at their maximum dosages, I’m not sure they’re making any difference at all. Beginning this week, I am weaning myself off the gabapentin. I am doing this for the most part because I don’t think it’s helping, at least not very much and definitely not enough. I am also doing this because I’m pretty sure it is causing weight gain and digestion woes.
Baclofen, I’m coming for you next! Hopefully this doesn’t screw me over the way it did last time I tried to wean off a medication.
About three weeks ago my physiatrist injected Botox into my right hamstrings and calf muscles to see if that would reduce the spasticity. It can take up to four weeks for this to fully take effect but so far, I’m not noticing anything. It is critical to start low with this medication. Too little and you feel nothing for three months. Too much and your leg is a noodle for three months.
The process of injecting botox into the muscle is fascinating. The practitioner has a device attached to a very thin needle that delivers the botox. The device can “hear” the activity/contractility of the muscle. The practitioner literally fishes around with the needle inserted into the muscle, looking for the highest amount of “sound” the muscle is making and then injecting at this location. It is like standing behind an old television set, adjusting the rabbit ears trying to get the TV signal to come in. Or like moving around the room with your phone trying to get better signal when you are at the limit of the range.
Botox device and accoutrement.Injection sites
Last week I started taking LDN (low dose naltrexone). According to the National MS Society:
“Naltrexone is an opiate antagonist that is taken orally to block opioid docking sites (receptors) on cells. It is approved by the U.S. Food and Drug Administration (FDA) for the treatment of addictions to opioids and alcohol. At significantly lower doses, low-dose Naltrexone has been used off-label as a treatment for various types of cancers, HIV/AIDS, Parkinson’s disease, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), emphysema, as well as multiple sclerosis (MS) and other autoimmune diseases.”
I am now at the highest dose possible for this, 4.5 mg per day. The hope for this is decreased pain in my hips and back. So far not noticing any benefit here either. I will give it another couple of weeks.
We are lucky to live near one of my HSCT cohort patients and his wife – Bob & Kandace. We got together for dinner a few weeks ago, so sweet!
I am way behind my own arbitrary schedule for writing this blog post. I am now six months post treatment, six months through the roller coaster first year. This is the middle of the tunnel, the part of just getting through it. I think that’s why this has been so hard to write. There is no new news, no big breakthroughs, no major changes, nothing sexy to talk about.
My original goal was to do a post every two weeks. One post that was musings (thoughts on this HSCT journey) and one that was a detailing of symptoms. So, I’m conflating the two into one this month.
Legs and walking: I hear a vinyl record skipping over a scratch in the grooves, playing the same lyric over and over. That lyric is spasticity, and it is getting as old for me as I imagine it is for you, the reader. The spasticity in my right leg continues to be intense and difficult to describe. My massage therapist is trying to identify which specific muscles are the biggest complainers, the biggest overreactive players. To me it feels like a chain reaction that starts in the upper thigh, crosses my knee, continues down my calf and echoes all the way through my foot. The muscles system itself doesn’t work that way, but my physical therapist has explained that there is a neurological chain that does map to my experience.
We have identified two muscles in the thigh that are the big bullies in this system – gracilis and adductor longus. I have an appointment with my physiatrist for Botox injections into those muscles to see how far down the chain it will impact.
Side notes on Botox: though commonly understood to be used to make your lips fuller, your face wrinkles go away, and overall freeze your face into an unmoving glamour mask against aging, it is also very useful with overactive muscles. Using it, however, is a careful balancing act between relaxing the muscles just enough to be able to use the legs (or arms, or bladder, etc) more freely and making the muscles too weak to be useful at all. About a year ago I had Botox into my right arm bicep which helped that muscle unfold and become more comfortable. It also made my arm and hand too weak to do much else. With the legs, this dance is even more critical. Too much and I won’t be able to walk. Thankfully it only lasts three months.
Because of spasticity, my hips and low back hurt. Both sacroiliac joints and the muscles that reach out from there around the outsides of my hips ache night, and day. I am retraining my body to use my gluteus muscles (asleep and weak for years) and my adductors and abductors in the jobs they were meant to do with walking and stabilization. This retraining includes reminding my hips of the appropriate position to support everything else – tucked under. This retraining also has the side “benefit” of increasing overall pain in the area. I honestly don’t know if this is ultimately a good thing on the way to less pain as the muscles wake up and work out the kinks (my hope) or a more chronic problem that will need another intervention at some point.
I am always looking for new tools to decrease pain and increase strength. I recently purchased a vibration plate that has a good track record among other people with MS for decreasing spasticity and hip pain. I am learning how to use this, and it seems positive so far. More to report later.
There is a difference between my outside presentation and my inside experience. I often look like I’m going to fall. I stumble and lurch, I am entirely ungraceful. But I don’t fall. The work I’ve been doing with physical therapy has created stability in my core muscles. From my shoulders to my ankles there is a strength I feel with every movement. I am in a holding pattern waiting to reach the end of this tunnel when I shed my spasticity like a snakeskin, Clark Kent becoming Superman; underneath is resilience and steel. This underlying strength gives me hope for the future.
Medication update: I am on the highest dose of gabapentin and close to the ceiling with baclofen. I think they are helping somewhat, but not a miracle solution. I continue to have a love/hate relationship with these medications. I am still using pot, mostly at night for sleep. The 6 month mark also means I get to drop one medication, daraprim, the pneumonia prophylaxis.
Arm/hand: I’m leaving this heading in to remind me that I care and to not abandon hope that this can get better. Right now, legs and hip are on fire, and I only have limited time. The squeaky wheel…
Fatigue: Still gone. I am thankful every day that this symptom has resolved.
Bladder: I am still wrestling with some degree of urgency. I’m not gonna lie, I’ve had a couple of peeing my pants incidents, thankfully not when I was in public. The game I am playing is to push the boundary of time from the feeling of needing to urinate to going to the bathroom and occasionally, I miss the mark. My pelvic floor therapist has some quick phrases for this game; “sit still and chill” (slowdown and consciously relax, remind the bladder that it is OK and has room) and “take five” (take five deep breaths, relaxing everything on the in breath and pull up the pelvic floor on the out breath). Work in progress.
Bowel: A little weird. No details here, you wouldn’t want them. It did want to note that I’ve been dealing with bloating which coincides with starting gabapentin.
Hair: My hair is definitely growing back curly, but it was pretty curly before so it is hard to know how much the chemo impacted this. I am at a crossroads of sorts, curious to see what it looks like as it grows and at the same time liking the ease of it being short which would mean a haircut. I haven’t reached the haircut point yet.
Well, I still have MS. Not that it was ever supposed to go away, but there is a part of me, and probably a part of every person who undergoes HSCT, that held on to a glimmer of a possibility that I would get home and miraculously everything would disappear, return to the before MS reality, be the one-in-a-million miracle case. To be honest, every morning there is this time between waking and moving where it feels entirely possible that movement will be “normal” – like waking up from a dream. I will swing my legs over the bed and be strong and stable. I will reach for something with my right arm and easily grab hold. This hopefulness is essential even if it is devastating.
The first few weeks that I was home I was surprised at how normal I felt, not that much different from how I felt before I left. I was thankful to have more energy, not need to sleep all day, and feel motivation to do things. Now, the long game is settling in. I still have more energy than before treatment and I still am motivated to do things, but the novelty has worn off. In addition, these first months of intense carefulness with infection risk comes coupled with isolation and loneliness. By necessity I am by myself a lot which leaves too much time inside my own head.
Other than my subjective experience, I won’t know if HSCT “worked” to halt my disease progression. And I won’t know, even subjectively, for one-two years. I have chosen to act as if it worked which feels like the only way to move forward. Therefore, my daily “job” is the tediously slow work of building new neuroplastic pathways for better mobility and function. This job doesn’t have coworkers or a water cooler culture. It is very solitary. And I’m not gonna lie, it isn’t fun. Each movement I practice is hard and I find myself in a resistance-acceptance-resistance cycle. I do some exercises, then distract myself with some other task, or game on my phone, or YouTube video, then knuckle down again for the next round of exercises. Progress is almost imperceptible, but it is happening enough that I continue. I have to remind myself all of the time why I do this, why it matters. Being active in the outdoors with people I love is my biggest motivation. And, as sappy as it sounds, the possibility of being an active grandparent is a motivator that brings tears to my eyes every time I think about it (no pressure on Kira to ever have children!)
Identity
Ironically, my reality before I left for HSCT is still my reality now that I’m back. Over the last 5-6 years as my body has changed and my ability to move has become more challenging, my world has become smaller – closer to home. Simple ways to connect with others, “hey, let’s go for a walk!”, “Let’s go hiking this weekend!”, “Let’s go to the beach for sunset!”, “It would be fun to cook dinner together!”, “There is a fun (band, comedian, play, etc) coming to town and I’d love to go with you!” are not so simple when movement requires a mobility device and walking from my house to the car is a significant undertaking. I try hard to focus on what I can do, but there is a cold hard reality to what I can’t do that can’t be ignored. An unintended side effect of the pandemic, and our society-wide need to retreat, was that it made the lives of everyone else more like mine, if even for a little while.
With this reality, I keep bumping up against questions of identity, meaning, purpose. How do I connect? How do I contribute? How do I play? How do I build something? How do I explore? How do I have fun? How do I navigate all of this and not have a morose pity party?
I am wanting ways to answer these questions that don’t involve a huge amount of effort or hard work and it honestly seems like a contradiction in concepts. Getting out of bed in the morning is work, taking a shower is effort, my physical therapy, occupational therapy, sitting up in a chair, and handwriting practice all ask me to push hard both physically and emotionally with barely perceptible results. Once again, it is all a leap of faith. All the work I do to hold onto and try to regain mobility marinates in my ability to hold hope and optimism.
I want to find ways to play and have fun that don’t ask me to work hard, I want relief and respite from work. However, everything I think of has a learning curve, a challenge that requires effort and work. Learn to play ukulele? Explore art making? Learn a new language? Read a bunch of enriching books? Write a book? I am searching for something that metaphorically feels like falling into fluffy clouds made of laughing gas. It’s a work in progress. Somewhere in there is a mindset shift where the effort and work along the way are fun in their own right.
To Baclofen or Not to Baclofen
The last couple of weeks has also been a brutal reminder of body and medicine chemistry. I have been on a medication called baclofen for several years now and it is never quite clear if it is really doing anything. Its purpose is to decrease spasticity, but it is very hard to tell how effective it is. Spasticity has a natural fluctuation in intensity by itself – over the course of a single day or from one day to the next. Is my spasticity better because of baclofen or is it just a better day? Baclofen also has negative side effects – it causes fatigue and creates muscle weakness. A devil’s bargain, possibly less spasticity traded for weakness and loss of muscle. How am I to build strength, muscle, and endurance if I’m fighting against this medication?
Getting off baclofen is no small deal. You must go very slow because withdrawal symptoms are no joke. Baclofen withdrawal has been compared to withdrawing from benzodiazepines. Specifically, there is an emotional/mood impact that feels like intense depression and there is a strong likelihood of “rebound spasticity” which is a crippling exacerbation of MS spasticity. If a person weans off baclofen too fast, it can cause cardiac arrest.
I am not a patient person. At the beginning of last week, I decided I wanted to wean off baclofen to have a better understanding of my baseline spasticity without medication. Without doing due diligence research, I decided to cut my baclofen dose in half right out of the gate. I went from 20 mg three times per day to 10 mg three times per day. About two days into this process, I started to write this blog post and noticed that the world was a gray, nihilistic, teary landscape – I mostly scrapped that writing. Three days in the rebound spasticity kicked in like pissed-off wild horses and I could barely stand up.
I did me a little research and quickly brought my dose back up to my usual and the world stabilized. As of this writing, I have started a more gradual baclofen taper because I really do want to know the state of my body without it; what is my baseline. I am all for having as little medication in my body as possible. Fingers crossed for better success this time around.
I have been home a little over two weeks now. The time has flown by and the time that I spent in Mexico feels like a dream, an otherworldly experience that I was immersed in, a fairyland of sorts. I know it was very real and it did happen, it just feels like a strange blip out of normal life. Now that I am back home things once again feel familiar and routine for the most part.
Nils was able to be home full time for the first week. He went back to work half-time for the second week and as of Monday of this week he is back to work full-time. It was incredible to have him here as we figured out this new lay of the land.
These two weeks have been about reintegration, figuring out how to set up our day-to-day life and our home to keep me protected from infection, and just getting my bearings in general to figure out what’s working, what’s not working, and how to settle in to the long-game of recovery. It’s like stepping out of the vehicle after a car crash in checking that you still have your arms, legs, hands, feet and that you’re not bleeding. What is the damage assessment, how bad is it?
My assessment is that I’m doing well. Unexpectedly, my energy is better than it was before I went for treatment. The lifting of my MS fatigue that I experienced during treatment seems to have held. All my reading says that it will take a year to get back to my pre-HSCT baseline, that it will be a roller coaster of good days and bad days. At this point I feel pretty close to my baseline already. My muscles feel weak, and my endurance/stamina is perhaps a little less, but the increase in energy gives me the ability to do the physical work I need to do to get stronger and I already feel like that is happening. I need to be prepared for the roller coaster and I also need to be prepared how slow this process of rebuilding strength is likely to be. Impatience is my kryptonite.
My days consist of a rotating physical therapy routine which includes the MS gym, physical therapy exercises from my PT, hand/arm exercises from my OT, handwriting practice, and mindfulness meditation. I’m also keeping track of MS symptoms in a more concerted way than I have in the past. My goal for this blog, as I’m thinking about it right now, is to post every two weeks. I will track my PT/mobility progress and symptoms monthly to help me determine how things are changing, or not. The other post I plan to do monthly is a check in on mindset, motivation, life in HSCT recovery, identity, finding meaning and purpose in a differently-abled body – musings, for lack of a better description.
PT & Symptom Tracker
This post is going to be the progress and symptoms report.
Mobility/Walking/Legs
As of today, I have been consistently doing the mobility plan I laid out for myself six days a week. This consists predominantly of seated and supine exercises aimed at building core strength and hip mobility. I have taken a video to document my walking, my hip flexor function and spasticity levels in my right leg, and how my right ankle is functioning (or not). As I mentioned before, I feel pretty close to my baseline before HSCT and the post I created pretreatment reflects this.
Arm/Hand/Handwriting
I decided to start using the Saebo Reach device prescribed to me by my OT a couple of years ago. This is a device originally designed for stroke victims to regain arm and hand strength and function. Ideally they want you to use it six days a week for an hour, but I’m committing to about 30 minutes three times a week right now. I had done it in the past for about six months and it did help to increase my strength so I’m willing to give it another shot.
Saebo Reach torture device
I’ve included a video showing how my hand and arm move currently.
I’m also spending some time every day practicing my handwriting. I have picked a random structure for doing this that includes writing the alphabet in upper and lowercase, practicing my signature, doing some shapes that exercise my hand, and practicing the sentence I remember learning in grade school, “the quick brown fox jumps over the lazy dog.” My handwriting was never that legible to begin with so not hoping for a miracle there, my goals are to have it feel like I can write for longer without my hand fatiguing and to be able to comfortably fill out cards, forms, checks, etc.
Handwriting Practice
Fatigue/Energy
As I mentioned in my initial post about my symptoms pretreatment, fatigue has been one of the most debilitating parts of having MS. On any given day fatigue would be this background soundtrack, sometimes very quiet and sometimes exceedingly loud, but always there. During treatment, when my fatigue seemed to disappear, I was able to get clear on the distinction between MS fatigue and being tired. I still feel tired when I don’t get enough sleep or when I’ve pushed my body, but it is a very different feeling than MS fatigue. This has been incredibly hard to explain to people in my life who haven’t experienced it. There are a number of us in my cohort who have had this experience and we all agree that this distinction is important. When MS fatigue is present it is like a weight in your chest, in your head, in your arms, and your legs that saps motivation and the ability to move anything forward. Now my energy is consistent, even if my body is tired or weak, I still have the motivation to keep moving and building.
Bladder
This is one area that is still pretty much a bummer. Since having the hemorrhagic cystitis during treatment my bladder continues to be cranky. If you remember, this is the area where we quickly get into TMI. Please feel free to ignore this section. I am tracking how frequently I have to urinate and it appears to be anywhere from every 30 minutes to every 1.5 hours, average of about every 45 minutes. And it’s typically a pretty full bladder and I don’t have a UTI. I am currently getting appointment set up with a urologist and I hope this improves!
Bladder Tracking
Bowel Function
On the flipside, this is an area that seems to be pretty darn normal of late. I was so nervous about the possibility of getting severely constipated during treatment that I used every tool in my dietitian handbook to make sure I erred on the other side. Since coming back I continued to do daily Metamucil and 2+ liters of water per day and things seem to be nicely unremarkable.
Hair Growth
Shortly after I got home Nils did a really thorough cleanup of my head, so everything is now even all over. I’m excited to document how it grows back! Will it be curly? Will it be straight? Will it be more or less gray? Can’t wait to find out!
On a final note, getting outdoors, spending time at the ocean, and just immersing myself in the beauty of where I live has felt so essential since I returned home. It is still winter but we’re trying to take every opportunity we can to spend time outside. We are just waiting for the day when we can get out on our trikes!
Over the last 15 years I have worked with more physical therapists than I can remember. The gold standard, and pretty much a unicorn I have yet to find in the Seattle area, is a PT with an MS specific certification. This is a person who is skilled at foundational/orthopedic PT, has a deep understanding of neurologic issues, and specifically knows how to incorporate exercises that re-create the movement patterns you’re trying to repair. This is more than just strengthening muscles. The key is helping your brain remap neurons around the spot where the myelin has broken down communication.
I have found fantastic online options for this, but none of them are personalized to me. I have worked with many nice and talented people, but no one who really understands MS. Prior to leaving for Mexico, I wanted to see if I could find someone who could help me put together a routine for while I’m there that would help me keep moving so I don’t atrophy. I also wanted to establish a relationship enough that I could return and start working with this person as soon as I was able to do more in my recovery.
I am again thankful to my PCP who recommended I look into a practitioner at Kitsap Physical Therapy in Poulsbo. This practitioner is not an MS certified PT, but she does have extra training in neurologic issues, so basically the next best thing.
Jackie is a wonderful human and I immediately felt drawn to working with her. She did a review of my mobility issues and then asked the surprising question, “So, what do you do to fill yourself up?” This question was so unexpected and insightful that I immediately burst into tears. I explained that that has been my biggest struggle to figure out as my body’s abilities have changed. She said, “okay, we can work on that.” Definitely off to a good start.
We will only have a few appointments before I leave, but I feel hopeful that she will be an important part of my support team in recovery as I worked to rebuild my strength and function. Next teammate added to the team, check!
Today is the one-year anniversary of the birth of my new immune system, the day they put my stem cells back in my body to begin the process of rebuilding an infrastructure free of the memory of MS, hopefully. So, I thought I better get my butt in gear and write!
