This post is going to be concise with no attempt at poetry. It is late and tomorrow is a big day that kicks off a series of very big days.
Tomorrow we wake up early to go to the hospital and get our catheters put in to our subclavian vein. A relatively quick procedure. We then come home and have the rest of the day to rest and get ready.
Saturday we wake up early again and head back to the hospital for a process called apheresis. This is where they harvest all of the stem cells they have been working so hard to extract from our bone marrow. These will be stored for the next two days. This is a three hour process.
Then we are returned to the clinic where we are housed and do a five hour chemotherapy infusion.
Sunday we again wake up early and head back to the chemotherapy room for another five hour infusion session.
Monday we can wake up early and go back to the hospital to have our stem cells re-implanted into our body and our catheter removed.
At that point, we are at what is known “day zero” (also commonly known as our stem cell birthday) and enter the neutropenic phase of the treatment when we isolate while my body begins to rebuild its brand-new immune system.
I wanted to make sure to mark that today was actually pretty amazing. I woke up and for the first time in as long as I can remember fatigue wasn’t present. There are days when it is barely there and there are days when it is strongly there all day, but I can’t remember a day where it simply wasn’t there. And it wasn’t there today.
Also, my ever present spasticity was also almost entirely absent. My walking was smoother, my energy for doing physical activity felt consistent and it was just overall a pretty damn good day.
Another quick thing to note from today happened in the evening. I got up from watching a movie and it felt like my back went into an incredibly tense and painful spasm. I have never felt anything like it before. It felt like the muscles were rock hard and throbbing spasms were rolling up and down my back. When I described this to the physician here he said that is actually bone pain caused by the injections. It’s a good sign. He described my experience so thoroughly that it gave me incredible relief. Simple ibuprofen was able to take it away.
So, I’m feeling solid, even better than solid. In bed and ready to sleep my way into this next big push. Game on.
Sometime early evening on Tuesday, I came back to myself. The pieces re-collected and my perspective became familiar again. My cystitis had not resolved, but it was clear it was moving in that direction rapidly. I had successfully implemented a strategy of drinking the required liquid but stopping by 6 PM which made my night meaningfully less interrupted.
With a good night sleep and a feeling of centeredness, today felt strong and fun. Many of us spent the day on the roof deck enjoying each other’s company, playing games, reading books, soaking up the sun. It was only the second day I felt strong enough to do physical therapy exercises to stretch out my body that had been so contracted for the last days. It was a surreal limbo day when our bodies had recovered from the first onslaught and we had not yet started in on the next.
As I have mentioned before, we are broken into two groups and group 1 leaves the clinic tomorrow morning for the hospital to have their ports put in for stem cell removal and replacement. Our group goes Friday. The stem cell harvest happens the day after port placement.
Since this was the last night we would all be together before port insertion, we decided to have a shave-your-head party on the roof deck for support and celebration. This is a common tradition at the clinic.
I have shaved my head before and don’t feel emotional about it. Hair grows back. But that wasn’t true for others. The first woman to go cried as her husband cut her hair with all of us telling her how beautiful she is. He then sat in the chair and she shaved his head and beard. They Facebook livestreamed the whole thing to their friends and family back home.
I went next and my mom cut my hair. It was quick and fun to see blue hair flying around in the wind. The third woman to go did it via video to her husband and son at home. She was the only one who had not cut her hair shorter before coming here.
Finally, the last one to go was the only man participating. He had to shave both his head and his beard. His wife did the honor and it was emotional for her in a pretty significant way, not because of the hair loss, but because of what it represents with what’s to come next in our treatment and also everything that is embodied with what we are undertaking; the hopes, the dreams, the crossed fingers.
Two of the men going through treatment are already bald so they hung out with us supportively and said it’s not so bad, look how handsome we are.
After that, we had our evening shots (as close as we come to a cocktail hour), mom and I headed to dinner, then settled in for another solid night of sleep.
Greetings from a stronger place. I left off the story after the first day of chemo. The next morning I felt great. I seemed to have fared pretty well at that point. Better than many in fact. The second infusion went smoothly although the electrolyte drinks we are required to intake were noticeably more disgusting. Apparently that is a common side effect of the chemo, taste changes.
As the day wore on the nausea and fatigue increased. A fun side effect of the chemo, and the fact that we have to drink 3 L of water, is that we all ended up having to pee every 30 minutes through the day and night. Not very restful.
As time went by the frequency of my need to pee increased while others did not, almost every 15 minutes. I also noticed a slight burning and became concerned about a UTI. I contacted the doctor and he said that this was all normal and part of the treatment, that I could relax. I then noticed blood and reached out to the doctor again. At this point, he said, “ Oh, you have hemorrhagic cystitis. I will send you the medication to start right away. This is normal, a common side effect, uncomfortable, but not dangerous.” I am one of two patients with this lucky lottery ticket and it has brought us closer.
On top of my chemo fatigue I now have this added layer that kept me awake all night having to pee every 10-15 minutes. This was in addition to the very poor night of sleep the night before. I was exhausted, overwhelmed, and uncomfortable. I have to say, it felt like one of the darkest things I’ve gone through physically. And when you are that physically depleted, it feels like the whole world is lost.
Over the subsequent days I have been slowly emerging out of that hole. In addition to what I described, we also started twice daily Filgastrim injections to stimulate bone marrow stem cell production. We meet together at the first floor clinic as a collective at 8 AM and 7 PM to step into a room to have our vitals taken and our injection given, right arm in the morning and left arm in the evening. We chat, check-in on how everyone is doing, and see if anyone needs anything. HSCT happy hour.
Other than that, the day is ours to do as we please. Games of Yhatzee, reading, talking, eating; all mostly on the roof deck. We are a group of 16 with eight patients and eight caregivers. There are people from Norway, Scotland, the Midwest, the UK, and Washington state (there is a couple here from Olympia).
This is that type of situation where you are thrown together for something very intense and the barriers come down pretty fast. We quickly became comfortable talking about the most intimate details of our lives with MS, our bodily functions, our moods, and experiences through this process. It helps that nothing is private in our discourse with the clinic. There is a series of WhatsApp channels where we ask all of our questions to the medical team, the logistics team, and to each other. These are not private. If you have a medical question, you put it in the group chat. The most intimate things go out nonchalantly and we all are remarkably comfortable with. In fact it helps to know exactly what other people are dealing with to gauge where you are in the process and to make you look at things you might not have noticed. Not exactly HIPPA.
Roof View
The people are fantastic, it’s an amazing group that I get to go through this very difficult thing with. I will post more about the people later.
The clinic staff and medical staff are exceptional. They are kind, responsive, and very warm. The food has been fantastic. I will also post more about this place we are in at another time.
Now I am emerging back into uprightness. I have learned to wear an adult diaper 24/7 in order to not have to go to the bathroom every 10 minutes, only to pee a teaspoon. My energy still struggles. But all the pieces are improving and this likely will resolve in the next couple of days. The good news is that the hemorrhagic cystitis is highly unlikely to happen with the second round of chemo. I had been terrified that the next time around would be even worse but the doctor reassured me very convincingly that it rarely does, your body somehow gets used to the chemicals and knows what to do.
We continue with the two shots per day until Friday where we begin the process of harvesting our stem cells, the second round of chemo, reintroducing our stem cells, and then moving into neutropenia where we will be isolated.
Through all of this, my mom, as my caregiver, has been amazing. There are a lot of details, a lot of technology, and a lot of doing things for me that are hard for me to do for myself. I have been so thankful to have her here with me and we are together trying to make the best of it. I was especially thankful to have her here during the really hard couple of days.
Off to bed. Thank you everyone for all of your support. I really appreciate the comments and texts and other ways of communicating with me out there. I very much want to respond to every single gesture, but I’m realizing that it’s more energy than I have. Just know that I feel the love and love you back.
I wanted to take a minute to check in and let people know that I’m still here! It has been a very rough few days since the second day of chemo and I have not had the energy or ability to write. Things seem to be turning around and I hope to recap the story very soon!
Our cohort of 8 patients has been divided into two groups of 4, group 1 and group 2. I am in group 2. Group 1 is a day ahead of us in their chemo treatment, so they completed the first dose yesterday and the second dose this morning. This means we get to watch what’s coming. One member of their group is having a difficult time, but everyone else seems to be doing okay.
I spoke with many people before I left about my intention during treatment to do meditation, at least at the beginning of each treatment day, visualizing the cells in my body that will be removed by the chemotherapy and holding them with gratitude, acknowledging how they have always been trying to do their best for me. I also had the intention of visualizing the molecules of the chemotherapy coming in as an ally and welcoming them, also with gratitude. When my sister went through chemotherapy many years ago, she chose to not think of her chemotherapy as poison but instead as a friend, a team member, an ally. That has stuck with me all this time and has inspired me.
I entered the chemotherapy room with all the objects I had been given, on my body, touching me in some way. I brought my eye cover and my headphones, and I found a Pandora yoga channel with peaceful background music. I queued up the channel, put my earbuds in, pressed play and pulled my eye cover down.
What happened in that hour that I spent meditating was beautiful and profound, unplanned and unexpected. As I started visualizing the cells in my blood it became a dance of sorts where the chemotherapy cells would meet with the blood cells, bow in honor and blessing, then pick them up in their arms to carry them where they needed to go. It was stunning.
At some point the objects that were on my body, connected to the people who had touched them and infused them with intention, seemed to evoke all of you. Into my bloodstream came the people that I love, so clear and vivid. Small faces and bodies started to help the chemotherapy drugs with their work of bowing, honoring, and carrying off. They seemed to be there with giddy joy and playfulness. Next, these mini spirits chose to travel to the lesions in my brain and work to clean them or prepare them for healing. I literally pictured them with spray bottles and cloth wiping down the edges, sending them care and love to be ready for what’s to come.
I was in tears under my eye cover and so full of gratitude for each and every one of you out there supporting me. I named everyone in my thoughts and saw your faces.
After, we went out for dinner on the roof deck together as a group and shared a lot of getting to know you stories. So far, I am not having side effects, but we are on heavy duty prophylactic medication. Some people from group 1 reported having some nausea in the night but not too bad. I’ve had a couple of hot flashes, but heck I’m used to that.
Tonight’s sunset
Fingers crossed that the night goes smoothly. We get up early for round 2 at 8 AM tomorrow.
Given that we were on a redeye flight, the travel went pretty smoothly. Because I need wheelchair service to get through the airport, we are moved to the front of all lines and whisked through checkpoints. It is a nice perk, but it is also a very strange giving over autonomy to someone I don’t know as they push me through the airport at their speed and cadence.
The 4.5-hour flight was unremarkable with little sleep for either of us. When we arrived in Mexico City, the throng of people waiting to move through customs, even though it was before 5 AM, was like being in a massive music festival with bodies pushed together so tightly there was no room to move and no clear lines. I was pushed through the crowd at my waist-height view while my chariot driver muttered repeated “excuse me”s to people to part the sea. While others were likely in line for a several hours wait, we were steered through customs and to our waiting clinic connection in under 15 minutes.
Our guide at this point, Lorenzo, gave us new masks and handed us plastic face shields to keep us protected for our van ride. He proceeded to spray sanitize our luggage and helped us into our van for the 2-hour drive to the clinic. It was now 5:15 AM.
Layers of Covid protection
I slept most of the ride, but the extreme bumps and jolts kept my mom awake. We arrived at the clinic a little after 7 AM and were smoothly ushered into our apartment where we learned we would have to stay until the following day when we would have our Covid tests.
We now had a full day-and-a-half in our nice, but small, apartment to get settled in. The apartment is very clinical. The surfaces are hard and easy to clean. The tones are browns and grays. Both bedrooms have windows that don’t open for airflow, a precaution to keep me safe from infection.
Our room numberMom’s bedroom
BathroomView from our windowMy bedroom
We were both exhausted and there are a lot of technology and systems to get coordinated once you arrive. We were handed a cell phone which has all the details of scheduling, treatment information, and communication with the staff and logistics of the building. We needed to learn how to connect with the kitchen for our meals, how to connect with our driving team, how to connect our phones to the television for video presentations and zoom meetings, how to get the TV working at all for the many times we will need to watch Netflix, and overall acclamation to our new home for the next month.
Whenever you have a question you send a note through the phone app they provided, and someone very quickly arrives at your door to help you solve the problem. Masks off, knock on the door, masks on, problem solved, masks off, knock on the door, masks on, and so on through the day.
We ordered breakfast, and then went to sleep for a few hours. When we awoke more technology and systems acclamation until dinner. We knew there was a roof deck on the building, but we were captive in our apartment until we knew we were Covid free. We watched the sunset from our windows, watched some comedy on Netflix, and went to bed. However, right before I went to sleep, I noticed that they had populated my schedule for the whole 28 days and I started looking to see what was ahead of me.
My schedule for the month of February
I clicked on the schedule for Wednesday, February 2 and saw that that would be my first day of chemotherapy. It felt shocking, a thump in my chest. I had it in my head I would start chemotherapy on Thursday and having it one day closer was challenging to integrate. That is the day when this process really starts. That is the day of no return. That is the day when things start to change.
Chemo day schedule
I also saw that the day I will have my stem cells reintroduced to my body, what is known as my “stem cell birthday” or “day zero”, will be February 14. One of my fellow patients had noticed a building across from us that lights up at night with a heart. There seems to be a gentle, loving, theme emerging to this journey. At least I’m choosing to see it that way.
The next morning, our Covid tests were at 7:45 AM, along with nurses who came in to take a bunch of blood from me. We were told our Covid results would not be available until around 1 PM and we needed to continue to stay in our apartment until then. We were aching for fresh air and more space. We had YouTube videos to watch introducing us to the treatment, but no other distractions to mitigate our agitation and boredom.
At a little before 1 PM we got the notification that we, and all our cohort, were Covid clear. I looked at mom and said, “let’s go to the roof!”. We put on our shoes and our masks and raced up to the roof shouting with glee to the staff we passed on our way, “we are free!”
Roof DeckView from the roof deck at sunset
We were the first to emerge onto the roof, but very quickly after that others emerged with celebratory fist pumps and words of greeting. We then went to our first meal outside of our apartment and then off to have a chest x-ray.
I spent the rest of the evening in our apartment resting (not a lot of sleep the night before) and mom spent her afternoon/evening drawing on the roof deck.
That brings us to today, Tuesday. It started with breakfast and a lumbar MRI. I don’t have another appointment until this evening where they will do a cardiac evaluation and lung function tests. We have been hanging out on the roof, I’ve been writing, and the staff here put on a game of bingo on the roof deck for those of us who were not starting chemotherapy today.
Bingo with MonikaBingo winner
Tomorrow will be a whole series of consultations with neurology, hematology, and a Zoom meeting to prepare us for the chemotherapy that starts at 1 PM. Those are big words to write. As I mentioned above, that is when it starts. That is when it gets real. I am taking all the well wishes, love infused objects, and memories of people and place with me as ballast.
There is a meditation I’ve been really loving the last couple of weeks. It’s a practice of welcoming all aspects of your experience with warmth, graciousness, and acceptance. This includes the difficult things as well as the easy things. The idea is to invite them all into the party of your humanness as welcome guests. It feels like an important perspective now that I’m on final approach to treatment.
The last few days have felt bumpy. I’ve been grumpy. My anxiety about what is to come is feeling big. The doubting voices in my head and heart are speaking loudly. “Will this work?” “Will I be miserable?” “Why am I doing this to myself voluntarily?” “The year ahead is going to be rough, am I up to it?”
Welcome to the party. Welcome analytical, researching mind. Welcome fear and uncertainty. Welcome hope. Welcome planner and organizer. Welcome controller. Welcome excitement. Everyone please come in, enjoy some refreshments, get to know each other – this is a safe space for you to hang out.
And welcome gratitude, especially gratitude. The last couple of years with Covid have brought isolation. I have been caught in a belief that my circle of friends and community had shrunk or disappeared. I don’t think I’m alone in this. To be safe and protect the ones we love, we have retreated to our homes and forgone even the simplest of gatherings and connection.
But this isn’t the real story, in fact my circle and community is alive and thriving, beautiful and rich. I have been brought to tears every day this last week by a profound outpouring of love and support. I have felt almost embarrassed, and definitely humbled, by the beauty and generosity of the people in my life. This has been staggering, breathless, and ultimately fortifying. I have received poems, gemstones, songs, a bad ass power bracelet, fingerless mittens and hand warmers because my hands are always cold, prayer beads, drawings, cards, a healing bundle wrapped with herbs, and so so many words, written and spoken, that are deeper than just obligatory “get well soon”. Words that express genuine love and history. Words that take time and thought and effort. Words that show an interest in really understanding. All in all, it is a profound sense of feeling seen and held. This is an exquisite place to be as I pack my bag with the practical things I need along with these tokens infused with the people and place I love. Welcome love. Welcome healing. I am carrying all of you with me and am honored and thankful for the strength and hope your love gives me access to.
My mom, who will be my caregiver for the whole 28 days (more enormous gratitude!), and I get on a plane tomorrow night at 10 PM and arrive in Mexico City at around five in the morning. See you in Puebla, Mexico!
As I prepare for Mexico, I want to document my current MS symptoms as they exist right now as a baseline before treatment. This post is a long one, buckle up (or ignore 🙂 ).
There will be no objective way to determine if the HSCT treatment has halted my MS progression. Since my original MRI in 2007 that clearly demonstrated that I had MS with a classic lesion/flare pattern in my brain, I have not had another, single change in my subsequent MRI scans. Without ongoing flares/lesions, there’s no way to determine if the frequency has changed or stopped altogether.
There is not a blood test that identifies MS or MS activity. No biomarker of any sort. The only way to demonstrate or document my progression, or lack of progression, is my experience of my body. This is how my neurologist has assessed my progression to this point and it is really the only way science knows to assess a person with a progressive form of MS.
So, there will be no objective measure to determine if HSCT has halted my disease progression except my own observation. And that clarity will not be a quick process because healing after HSCT is commonly 1-2 years.
HSCT is designed to halt progression and it is not a guarantee that it will do even that, though the odds are around 70-80% that it will. It is explicitly not an expectation that any existing symptoms will improve, but there are many reports of improvement from small to significant.
Photo Credit: Toolshero.com
Some people report distinct changes right away that help them know it has worked. For some, the symptom of debilitating fatigue lifts and doesn’t come back. Some have reported that spasticity in legs or arms seems to let go and remain improved. A common symptom improvement that people report is a marked difference in bladder symptoms, which I will go into more detail later! For most people, any symptom improvement is a slow, plodding process.
The symptoms documented here are, right leg spasticity and mobility challenges and how that relates to walking, right arm and hand spasticity and contracture and the impact that has on activities of daily living (ADLs) and handwriting/typing, fatigue, bladder issues, bowel issues. You are welcome to read these and skip over any sections that make you squeamish.
Right Leg Spasticity/Mobility
The symptom that first had me go to a neurologist was foot drop. This is where it becomes difficult to pick up your foot, or more specifically your toe, to walk. It is easy to catch my toe and trip because of this. To decrease the likelihood of tripping or falling, it is common to start doing what is known as a “circumduction gait” where you swing your leg from the hip, out and around, to help that foot clear the ground. This can start out subtly and increase over time.
In my case, foot drop has become more pronounced and my foot likes to curl in and down. There is also intense spasticity in my ankle, my knee joint, and my hip joint. Every point along the path of my leg resists moving normally. In addition to the spasticity, the leg has become quite weak over time and some of the muscles have atrophied, especially the glute muscles and hip flexors. They are simultaneously incredibly high tone and tight and very weak.
Video taken Jan., 2022
There is a test I do every time I go into my neurologist’s office called the “25-foot timed test” this is where you simply walked 25 feet as fast as you can and get timed to see if your time changes between visits. It is a crude test and I’m basically capable of walking at an okay clip for 25 feet but further than that that and I get weak and slow. Because the test is only 25 feet, it does actually catch much of the important changes.
I am currently able to walk around inside my house if I rest frequently. I try to minimize going up and down stairs because it’s exhausting, but I can still technically do it. I use the provided scooters at the grocery store to shop. While it is hard to quantify how long or far I can walk, I would say I can walk outside on even ground for about 100 feet before I need to rest. I push myself further than that if I must, but it costs me. If the ground is uneven, I need trekking polls or walking sticks and I can go less distance. I need visual cues to walk safely and I am significantly less stable on both even ground and in the dark or lowlight.
Spasticity has an impact on my circulation. My right foot is constantly cold because there is less blood flow to the extremity. My ankle commonly swells, and my foot is often discolored, either white or purple depending on the day.
About a year and ½ ago I had a left-sided gas pedal installed in my car so I could drive safely, and I had to train my left leg to do what my right leg had done instinctively for the last almost 25 years. At first, I hadn’t known that accommodation was possible, and I had been confronted with losing my autonomy with driving. I hid from myself and others that I was feeling less and less safe driving, scared that I couldn’t stop quickly enough, scared that my foot might get caught underneath a pedal. But I wasn’t ready to let go of the freedom and independence that comes with driving. I know what it feels like to be the elder person whose family is needing to take away their driver’s license.
Right Arm Spasticity
I am right hand dominant. I write with my right hand, I use that hand to type, I cook and prep food mostly with my right hand, I eat my food with a fork or spoon with my right hand, just about everything I do depends on my having a competent right hand. Try putting your dominant hand in a fist and then putting it in a mitten and see how many things you use it for.
The change in my right arm and hand happen slowly over time. I remember looking at a photograph of me jumping out of the water in Hawaii in 2013.
Hawaii, 2013
In that photograph my left arm was straight up and exuberant and my right arm was as exuberant but crooked at the elbow. I hadn’t noticed that as I went through my day, but that photo caught my attention.
By 2015 I needed to switch from typing to voice dictation and by 2018 even the simplest bit of handwriting became difficult. My bicep muscle is so incredibly tight it pulls my lower arm in and the muscles in my forearm and hand contract my fingers into a claw type posture. I now need help filling out forms I can’t fill in on the computer. Any writing or journaling I want to do I have to do out loud with voice dictation. I eat with my left hand, which is clumsy. Nils will typically cut my food for me because that takes two hands. I wear very few articles of clothing with buttons, snaps, or zippers. I don’t wear shoes with laces. It has become difficult to do the most personal and identity defining act of signing my name.
Video Taken Jan., 2022
This hand and arm have a similar circulation issue to my leg and foot. It is frequently very cold; the texture of the skin has changed as has the character of my fingernails.
Though it is hard to do physical therapy for my foot and legs and hips, it still feels doable and like it makes a difference. Doing physical therapy for my arm and hand is incredibly confronting. Every movement feels almost impossible and my belief in its ability to make a difference is low. I know intellectually that I need to keep moving and using my hand and arm, but every day I put it off thinking I will start tomorrow.
Fatigue
MS fatigue is one of the most debilitating MS symptoms and commonly the symptom that has people leave the workforce early. It is also the least understood with no meaningful treatment to make it better. It is unpredictable and exists on a spectrum from mild to severe. On any given day I may wake up with energy and feel normal, able to do physical therapy, pay bills, write, be creative, do dishes, do laundry, and overall be able to engage and contribute to life around me. Or I can wake up and barely be able to function. On those days it takes me forever to get out of bed. If I shower, I must rest afterwards. Putting on clothes is exhausting. Any plans I had crumble and things feel bleak. Randomly, sometime mid-day or that evening, the fatigue can lift like it was never there. Or, partway through the day it can descend and knock the day off course.
Photo Credit: MS Trust
This seems to be a symptom that many people report going away with HSCT. If this alone were to lift, it would be worth everything.
Bladder Issues
We may now be dipping our toes into the arena of “TMI”, so feel free to leave this party now if you would like.
I am a member of an amazing group of women with MS who have been meeting weekly now for a year through Zoom. We found each other last February through an online physical therapy program called “the MS Gym”, but our friendship and conversations quickly evolved beyond the confines of that initial spark.
We all have bladder issues. The space that we have created has given us the safety and trust to talk about these very personal issues and support each other finding solutions. My bladder issues are a double-edged sword. I have both urinary frequency as well as urinary retention. This means I very frequently have to pee, and right away, pretty much every hour. It also means that my bladder doesn’t fully empty when I do pee leaving me susceptible to urinary tract infections (UTIs). Every one of us in our group has one or both symptoms. It is nice to not feel alone.
Photo Credit: Verywell Health
Through our most recent conversations on this topic, it has become clear to me that I need to see a urologist. I have been putting it off because I’ve been mostly able to manage without accidents or too many UTIs, but it could probably be easier with medical help.
This is another symptom that people commonly report improves or goes away with HSCT. I will wait to see how this symptom is impacted when I get back. In the meantime it makes it necessary for the airline flights, and a couple of long treatment days, to stick a few Depends in my carry-on.
Bowel Issues
Warning, even more TMI! This one will be brief. Like bladder issues, bowel issues can also be a double-edge sword. Most of the time people with MS experience constipation related to a decrease in smooth muscle motility that is directly caused by MS. In addition many of the medications we take have constipation as a side effect, increasing the problem. Baclofen is a medication that many people with MS, including me, use to help decrease spasticity and it’s a bugger for constipation.
Photo Credit: Verywell Health
On the flipside, it is not unheard of to have a very unexpected and unpredictable moment of “bowel urgency”. This is not diarrhea, just the inability of the anal sphincter to do its retention job, I will leave it at that. Yet one more symptom that would make a world of difference if it resolved.
With this treatment I am going to lose all my hair. It is that kind of chemo. Most people keep their eyelashes and eyebrows, but not everybody. From what I have read, I will lose my leg hair, armpit hair, pubic hair, head hair.
I am lucky that this is not a big deal for me. 15 years ago, for fun, I shaved my head and kept it really short for over a year. I know what I look like without hair. I know what it feels like without hair. I know in my head looks like. I am not afraid of this part. I’m going to be fine.
In preparation I thought it would make it a heck of a lot easier if I shaved my hair really short before I left. I also thought it would be fun to do that with Kira while she was here over her holiday break and to dye it midnight blue. Why not? If I don’t like it it’s gonna fall out in a month anyway.
The night before Kira flew out to California, we got out the clippers, put a salon shawl around me, and went to town.
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!
