Saturday, January 21, 2023

I’m Still a Rock Star…And Yet

Image of written script, "Still a Rock Star... and Yet..."

I wrote a blog post in 2014 
I Feel Like A Rock Star! where I described learning my Multiple Sclerosis lesions were all two or more years old. This led to me proclaiming I felt like a Rock Star. 

For many years I related to the song by Pink, “So What,” because I connected with the lyrics. I felt my body had let me down, yet I would prevail even though it felt like MS and my body were fighting me. The song felt like an anthem rebelling against my MS. 

“And you're a tool
So, so what?
I am a rock star
I got my rock moves
And I don't want you tonight”

Friday was a very long day with MRI scans in the morning and a neurologist appointment late afternoon. I awoke at 5:30 am and left home in the dark at 6:35 am. A ferry ride and congested freeway drive are part of the routine getting to the imaging facility and my neurologist’s office. An hour in the tube for the MRI scans was so much better than years past. I saw Alonzo again - a terrific technician and delightful person. He always adds good cheer and compassion.  The facility also updated the scan rooms to allow seeing a digitized underwater seascape. Watching yellow and blue fish and skate swim under water was more relaxing than looking at the inside of the imaging tube.  

Morning scans and a late afternoon neurologist appointment allow me to do it all in one day.  It’s a long day, but it’s worth it to do it all in one trip. 

Today’s scans show no evidence of disease activity (NEDO) for at least ten years now. This is beyond great news.

I’ll give this context. When I was diagnosed in summer of 2008, I read a statistic that the majority of people with MS will likely need assistance walking (with a cane, walker, crutches or wheelchair) within ten years of diagnosis.

A few years ago, there was a false alarm that I’d had more lesions.  One set of MRI scans had shadows that I was told could be an old relapse.  Later it was clear that they were scan shadows and not evidence of any lesions. It felt like riding a roller coaster of emotions and belief in how I’m doing based on imperfect medical test results. The relief was immense learning that the scans were off and I didn’t have new lesions. Old damage continues to frustrate me and cause increased MS symptoms. Yet NEDA is the best I can hope for, and I’m immensely grateful for this win. 

Disease modifying medications have greatly changed the prognosis for people with MS. I’ve been fortunate to have them available at diagnosis, and they’ve been effective for my disease course.  My first year of diagnosis, I had three relapses. They were so impactful, I began to forget what feeling well was like. 

This blog post is about me, but it’s also not about me. In the early 1990s, no medications that tempered the immune system attacks on myelin (the nerve coating eroded by MS) existed. In the early to mid-90’s, three existed. In 2008 when I was diagnosed, there were four.  As of this writing, there are at least 24 options. The number of medications is notable for the magnitude, and it would seem excessive.  The sad part is not every medication works for every person, and it’s trial and error finding what works for each person. It’s also important to note that the effectiveness varies for each medication, and risks associated with modulating an immune system carries other health risks. It’s a necessary evil.  

All of the medications are expensive beyond belief, but they are saving grace for those of us who need them.  I’ll refrain from repeating my thoughts on this issue here, but I have written about insurance denials and prescription coverage previously if you want to check them out. Short story, I’m doing well and have coverage.  Not all do, and it’s a mess. 

These are four posts I wrote about medical insurance, if you feel like heading down that rabbit hole: 
I’m hard pressed to leave this on a negative note, so if you want to read a post that’s a bit more empowering for tracking and navigating insurance billing to help with financial impact, check out 

I want to acknowledge and celebrate this personal milestone of ten years without new disease activity. This summer I’ll reach 15 years post MS diagnosis. When I was diagnosed, the prognosis for people with MS was 20% of people would be bedridden, 20% require a wheelchair or mobility aid, and 60% would be ambulatory.  Ambulatory is such a sanitized word to convey the threshold that people are able to walk 150 feet, walk one block, and climb one flight of stairs. The bar is low, and the ability to do these things is everything when on the cusp of not being able to meet them. The prognosis for 1/3 of all patients was that they would go through life without any persistent disability, and suffer only intermittent, transient episodes of symptoms.” These statistics are from the National Institute of Health.

“Intermittent, transient episodes of symptoms” minimizes the impact MS has on a person. Even with the best possible disease course and NEDA, my life still revolves around managing my health and symptoms. All of my friends and family are impacted at one point or another by my health. I look like a healthy person, I work full time, and I am very active. And I’m extremely lucky.  

This past year, I walk-jogged a marathon. At mile 18, I was physically unable to run anymore. I could still walk though.  I didn’t care about how fast my pace was, and I knew I could walk the rest of the course and still make the time limit required to get credit and earn the title of “Finisher.”

I am doing well. So far, I continue “to go through life without any persistent disability, and suffer only intermittent, transient episodes of symptoms.”

It might sound great, and it is. That said, MS symptoms are a hassle. While grateful I’m doing as well as I am, it’s not a cake walk. My sympathy for all who experience health issues that inhibit them from activities and a lifestyle they desire. 

This weekend as I process the results of my health scans and consider milestones and the health journey I’ve endured, I celebrate my good fortune and I acknowledge it’s not guaranteed for things to come.  I sympathize with those who are experiencing a more difficult health journey of any flavor, and I extend my well-wishes and effort to help.  

Bittersweet is an apt description for how I feel. I embrace feeling like a rock star with rebellion, pride and full knowledge that it’s not all within my control. I extend my heartfelt compassion for those vulnerable, not faring well, or living with challenging times.

I hope you find your inspiration to weather all you experience.  For me it’s still Pink’s song, “So What.”

"So, so what?
I'm still a rock star
I got my rock moves
And I don't need you
And guess what?
I'm having more fun
And now that we're done
I'm gonna show you tonight"

Much love and sincere well wishes for all.    



Sunday, January 15, 2023

Tracking Symptoms & Treatments with Compassion & Encouragement

With each new year, I think about what’s ahead, what I can control, and what will make the next 12 months fulfilling for me.  Instead of pushing myself to do more or be better, my approach this year for health management is to track what helps me manage my health with methods that are easy to use and visually informative. 

Knowing what my body needs is an ever-changing puzzle, and tracking provides clues for what could be the cause or remedy for things contributing to health challenges. Add aging and menopause to living with Multiple Sclerosis, and knowing how to best manage my changing body is not easy. 

Tracking helps reveal immediate issues and needs, and over time it divulges patterns and trajectories. It can show similarities and differences in my health condition over time, and it can indicate overall improvement or decline. 

Monitoring can be as detailed or general as each person likes, and it can ebb and flow over time. Periodically entering full details for how I’m doing in a moment is terrific for long term health status review.  Simple checklists and charts can provide reminders to do things. Over time, they can give clues to explain changes throughout a week or month. 

I like systems that easily fit into my habits and schedule instead of forcing me to make drastic changes. I will do things that help my health when I remember, and often a note, comment or routine is enough encouragement to make good choices. When my routine changes, it can completely derail good habits that keep me well.
 
I’ve often noticed when spasticity and leg pain increase, I’ll realize I’ve forgotten or neglected to do some or many of the treatments proven to help me manage spasticity. I may have run out of supplements or medication, missed my daily banana or stretching, or have just been dehydrated.  No one thing on a single day causes my MS symptoms, but missing one or more a few days in a row can really throw me off track.  

Without tracking, I don’t notice the correlation as readily. With tracking, I clearly see how frequently my biggest MS symptoms occur AND which good health measures I’ve done or haven’t done.  

I use both digital apps and a hard-bound journal to track my symptoms and treatments, and I like them both for different reasons. I’ll share examples for each method in this blog post.

MSAA has an app My MS Manager that is a terrific comprehensive tracking tool for monitoring MS symptoms, treatments, and well-being. I particularly like that the app is flexible and can be customized with items to track or receive reminders to do them. In the daily journal section under “Treatment Taken?” section, I added prescriptions and treatments that I know help me with the frequency desired and an option to set up reminders.  Items can be added from a standard list and custom items can be created. To track each item on a given day, I can easily click yes, no or not required for the question, “Did you take this treatment today?”

Seeing my individual symptoms and mood charted over long periods of time and being able to compare current and past data is invaluable.  Knowing I’ve experienced similar peaks and valleys helps me weather today’s challenges. Seeing what helped previously offers suggestions for what might help this time.  

I use the app My MS Manager to provide comprehensive tracking, and I use other apps for fitness and activity tracking as well. Syncing my watch and scale to other apps makes it easy to access data without added effort or time on my part. 
  
Technology is incredible these days, and apps are convenient. I always have my phone handy, so it’s a good option for a lot of my tracking.  

Yet I learned long ago there’s never one solution that will meet all my needs. I like pen and paper for its flexibility and visual reminders.  I use it to track and remind myself to do daily or weekly things that help me maintain my health. I use a nicely bound journal with blank dot grid pages.  This approach works great for me for symptoms that are helped by a long list of treatments.

By entering treatments and activities next to the symptoms I’m managing each day, I have a built-in visual to connect how I’m feeling, why I might be experiencing symptoms, and what I can try to feel better. I’m including an image below to show the format I’m using and is working well for me.  

Page from my journal showing tracking example
In this example for spasticity and leg pain in my extremities, I have a number of things that help reduce pain including stretching, movement, supplements, daily banana, a vinegar muscle tonic, staying hydrated and medication.  Tracking on the same page the symptom or challenge along with actions I can take helps me see easily what else might help or if I am already doing everything I know helps and it’s getting worse. It was clear to me that when my leg pain became excessive that I could get back on track with stretching, supplements and the vinegar muscle tonic. It’s getting better every day, and I can see that with my chart. 
 
Please know that MS symptoms can often be unpredictable and uncontrollable. Tracking doesn’t prevent relapses.  This may be obvious but it is important, so I’ll say it again:  

Tracking does not prevent relapses.

If you have a relapse, don’t blame yourself. If you know someone who has a relapse, don’t blame them. It’s easy to judge others and try to assign blame, but it doesn’t do anyone any good. We’re all doing the best we can with what we have and where we are at each point in our lives.  Take any Judgy McJudgy-Pants conclusions elsewhere. Okay, this side rant is over and we’ll get back to tracking health items. 
 
It helps me to look at tracking as a monitoring tool rather than a long list of things to do that can put more pressure on myself. I don’t need more pressure, stress or judgment, even if it’s from me. I need to know I’m trying, and I need to remember I’m doing the best I can. A tracking tool can remind me without requiring me to take action. I still get to choose what I will or won’t do in each moment. I aim to tend to myself with compassion and encouragement rather than judgment and harshness. I wish all this for you too. 

Sunday, December 18, 2022

A Season of Convergence

Image of the word "Convergence" with small drawing of holly
The holiday season for me is one of convergence. A convergence of work demands, holiday tasks, gatherings, gifts and merriment.  It feels like everything needs to get done, and there’s not enough time in the day or energy in my body to do everything. It affects my routines, eating habits, cash flow and health. Yet I love it and look forward to it every year.  
Decorations brighten the landscape, workplaces and homes. Stress abounds, but so does good cheer. Frenzy and serenity coexist. 

I rush and rest, plan and adjust.  Priorities get met, yet they can change.  Checking in with myself helps ensure I’m clear on what’s reasonable for me to do or needs to be let go. My aspirations exceed my ability, and ruthlessness for what stays on the priority list is essential. 

There’s no possible way to do it all.  Picking and choosing matters. 

Convergence of deadlines and expectations organically occurs each year. Intentionally merging needs with wants can help lessen the amount of precious energy and time needed for them.  It can help make things less stressful and more fulfilling. My goals for the season are:
  • Know what I need and want, what’s good for me, and what aligns with my goals.
  • Batch things I need to do with things I want to do.
  • Look for ways to merge my needs and wants with things that are good for me, align with my goals and bring me happiness.
  • Be clear in each moment what’s important and let everything else fade away.
  • Have fun!
I often schedule walks with friends and colleagues to connect and be active. These outings are filled with updates, planning, problem solving, advice, encouragement, reminiscing, merriment and belly laughs. With these walks, my goals for movement, connection and fresh air for the day are met: check, check, and check. They do more than that though. They motivate, encourage and recharge me mentally and physically. Afterward, I feel both productive and indulgent – a perfect convergence of seemingly opposing mindsets.

With creativity, competing wants and needs can be fulfilled as complementary aspects of a single activity. For example, I enjoy writing, photography and art, and I want to spend time and energy pursuing them. They add to my quality of life, yet they don’t pay my bills or qualify as absolute needs. Managing my health and addressing my Multiple Sclerosis symptoms are definite needs for me.  In order to live as well as I can with MS, I need to listen to my body and learn what it needs.  I need to rest and manage stress, fatigue and other MS symptoms as best as possible. Monitoring and reflecting on how my body works and researching MS related topics takes time, energy and focus. If I think of my health and writing as separate and competing, I wouldn’t feel like I would have enough time or energy to spend on both. Instead, I unite my need to tend to my health and my want to explore creative endeavors by writing about MS challenges and what helps me live well with MS.   Writing helps me work through what I myself need, be clear about what helps me and create reference materials that are useful to me later. Writing ultimately helps me manage my health AND express myself creatively. 

This year, our office party changed from our usual dinner out to a wreath making event at a cidery and farm. We each learned something new, and we admired each other’s creativity. We shared stories and laughter while enjoying the ambiance of the venue and sipping delicious cider. Each of us left with a beautiful wreath as we marveled at the star-filled night sky and pointed out constellations. The pragmatist in me can say we checked the boxes for holiday gathering, connecting, learning, and creativity. The idealist in me knows it was a magical way to celebrate the season and my colleagues.  

In the midst of the holiday season with extra tasks, deadlines and desires, I seek ways to meet my needs and wants that are fulfilling and feasible.  I make time to reflect, write and tend to my health. I prioritize walks and friendship, and I aim to add merriment wherever possible. 

My wish for each and every one of us this holiday season is that our needs and wants converge for maximum fulfillment and joy. Cheers to you and yours! 

Monday, November 21, 2022

Thoughts Too Big to Share: An Early Fatigue Symptom

When Multiple Sclerosis fatigue rears up, my first noticeable sign is when I stop telling stories that come to mind. I edit myself more, and I contribute to conversations less.  A decision point noticeably inserts itself into the thought process.

Do I have the energy to share this story? Am I able and willing to commit to staying in the conversation? When I’m experiencing fatigue, the answer is no. Things I find funny, interesting or relevant become thoughts too big to share.

I decide I don’t have the energy to do the story, memory or perspective justice. Either I don’t have it in me to fully explain the nuance of my thought, or sharing seems like too much effort to undertake in that moment. Comments I might have otherwise made on social media posts become likes instead. I do enough to show I noticed, but I don’t expend the energy it would take to add a written comment. 

It’s a subtle indicator, but it’s an important one for me to recognize. The two takeaways I want to recognize when this happens are:

  1. It’s time to look at my schedule, medications and options for things within my control that help me cope with fatigue; and
  2. It’s a good opportunity for me to listen and ask questions about what others have to say about the conversation.

Listening to others reminisce about stories they’ve already told have been great opportunities to learn more about their thoughts and experiences. Stories I’ve heard many times are enriched with added details and perspective. Resisting feeling impatient or waiting for them to finish gets easier. Actively listening with ease and curiosity while they reminisce becomes the focus. Relishing how special it is that they like sharing that memory with me becomes an honor. Seeing if there is something they say that inspires a question to learn more allows me to simmer in the moment and enjoy their happiness. 

It’s a relief when friends and family are willing to carry the conversation instead of pressuring me to engage more or explain why I’m quieter than usual. The task of explaining myself or assuring them I am fine or will be fine takes a lot of energy that I may not have. If they do notice me being quieter or less engaged, not mentioning it can be a tremendous kindness. Weathering MS fatigue and navigating social interactions with grace feels like success. Those stories and thoughts too big to share can save for another day.  

Tuesday, October 18, 2022

Seasonal Well-Being Checklists

For me, autumn elicits memories of a new school year, football games, raking leaves, carving pumpkins, and pressing apples for cider. Prepare for winter with home tasks and wardrobe shifts. Move sweaters, boots and winter wear from boxes or the back of the closet to the front for easier access. Suggestions for weatherizing homes and belongings are prevalent and specific, but they are less so for personal health and well-being.  

Often, I experience recurring and seasonal symptoms before I realize I have a method that helps me cope.  I’d love to be able to avoid the suffering it causes if at all possible. I decided to create and follow a seasonal list of tasks to proactively address my health needs. It has an emphasis on issues that Multiple Sclerosis challenges or creates for me each year. 

Here’s my first attempt to capture what I’ll want to do each autumn for physical, mental, and financial health. 

  1. Review any medical records or personal journals to see what issues I’ve had during that season in the past and what helped. Plan ahead for any recurring issues.
  2. Start using a blue light in the morning with hopes to pre-empt any seasonal affective depression caused by reduced daylight hours.
  3. Make a plan, and set up space for movement.  When the weather turns, being active outside is less enticing. Have a menu of activities with space and equipment easily accessible or ready for transformation for stretching, strength and fitness. 
  4. Schedule a flu shot (Some can’t or prefer not to get one.  You do you.)
  5. Restock any allergy, cold or flu medications that work for me.  The last thing I want to do when I feel bad is go to the store to purchase over the counter medications. 
  6. Plan and confirm holiday locations and people to see. It’s nice to have things to look forward to and decided. 
  7. Review annual health care spending and health insurance coverage.  If out of pocket amounts limits have been met for the year, perhaps schedule some appointments that could be done this year instead of next. 
  8. Review income tax withholding amounts and estimated taxes for next year.  Determine if any modifications to withholding or other actions now might reduce the tax bill later.
  9. Remember the fall season can be tough with changing weather and routines, increased fatigue, and other MS symptoms. It often subsides with effort and time, and knowing it tends to happen every year can help offset depressing thoughts. 
Are there any things you’d add to the list? Please share if you’re willing!


Tuesday, September 13, 2022

Goal Management Instead of Time Management

Time is fixed and passes at its own pace.  Goals can grow, contract, adjust and evolve. 

Often advice for time management includes instructions to make lists, dedicate time for tasks, be organized, get up early, multitask, do more, and just generally be different than you’ve been.  While some are good suggestions, the attempt to fit an individual’s unique experience into a fixed and uncontrollable passage of time can miss the mark. It can be overwhelming and unrealistic when not considering a person’s specific life circumstances, obligations and health.  When already feeling like there isn’t enough time, the advice to do more can feel offensive.  

 

Time management seems to inherently approach the future from a perspective of scarcity.  It is true there is only so much time in the day, the week, the year, and a lifetime.  Each moment passes whether we’ve spent it intentionally or not.  Even so, I’d rather approach the future with a feeling of abundance.  There is limited time, I have limited energy and abilities, and I also have the opportunity to fill that time in ways that fulfill my needs and goals. I can do this by being clear about my immediate and long-term needs as well as my goals in each moment and for my life.

 

Time management advice recognizes that it can be a project to fit everything in, but it often forgets it can be effort to fill the time.  I’ve had both in my life, and at times they’ve paradoxically co-existed. There were fast-paced workdays where dedicated, productive accomplishments never seemed to put a dent in the backlog, and there were evenings with long stretches of solitude where loneliness was at the ready to dominate my head space. The daily schedule of surge and stagnation with such severe contrast was exhausting. That experience is telling for how different needs and goals dictate different choices and solutions.

 

If I approach each of these challenges as time management exercises, it seems like two very different undertakings.  If I consistently approach them as need fulfillment and goal management, the questions to ask myself and decisions to make can follow a single thought process.  

 

My goals for most weekends are to get outside, be active, spend time with loved ones, and rest. Asking myself what I need helps me determine how I want to accomplish my goals. If I’m experiencing symptoms due to Multiple Sclerosis, I can shorten the time spent visiting friends or modify connection to something requiring less exertion like a phone call or text.  Activity intensity can be lessened, and I can include more passive rest. Sometimes a goal is to go for a jog, but my body isn’t up for it.  The time is there, but no amount of time management will address my needs. Managing my goals based on my health needs helps maintain my sense of well-being.  

 

Another example of the difference between task scheduling and goal achievement involves paying bills. I need to pay my bills. I also need to make the best use of my energy and minimize stress where I can. I vividly remember the days when I dreaded paying bills and couldn’t be certain the money would be there when bills were due.  It wasn’t a matter of making time to pay bills, it was a matter of designing a path toward financial stability.

 

I don’t pay bills because I love the task or because it’s penciled in the schedule; I do it to keep my belongings and services and to avoid paying late fees, interest or overdraft charges. Among my goals is to not waste money when I can avoid it. Because I want to minimize the effort that bill payment requires, I open my mail when it arrives and file paperwork soon after.  I set up automatic deposits and payments where I can and balance my checkbook in increments of a couple minutes at a time. Doing this in small portions means I don’t need to schedule time or put a lot of thought and energy into it. 

 

I have a list of questions I ask myself to help me manage my goals while meeting my needs: 

1. What do I need in this moment, this week and longer term? 

2. What are my goals and what needs to be done to accomplish them?

3. What would help my body meet its needs? Would I benefit more from pushing myself or resting?

4. What needs to be done by me? Could it be done differently with less effort or by someone else?

5. How can I adjust my goals to meet my needs?

Your list may be different, and mine will likely evolve with time.  Whether I’m making time or filling time, I hope to make sure my needs are met, my goals support them and in the end my life has been fulfilling.



Thursday, August 18, 2022

52 Years: Receiving the Gift of a Full Deck

For my 52nd birthday, I have officially received what has to be the most collaborative, creative and heartwarming gift I’ve ever received.  

With two jokers and a couple extra cards expressing
my appreciation, there are 56 cards total. 
My sister thought of the gift after reading my blog post, "Playing the Hand I’m Dealt."

One-quarter of my life lived is post MS diagnosis, and I’ve likely been living more than half of my life with MS. I will turn 52 this year, and it tickles me to compare my age to matching the number of cards in a full deck. I’ll consider myself as playing with a full deck and working on adding another deck. I’m wary of the wild cards, but I will play what I’m dealt.


She started the project two months before my birthday by contacting my friends and family to invite participation. She coordinated sending them individual playing cards from a single deck of cards to sign and return. Some cards traveled across town, and others flew thousands of miles to arrive where they originally departed. Each card physically started their journey as common cards; exact copies existed in every other mass-produced deck of cards packaged and sold. Each card returned with unique messages and travels. She gathered them together, returned the full deck of cards to their original packaging as if they hadn’t been disturbed, gift-wrapped the package, and sent them 1,400 miles to my doorstep. 

 

The gift I opened appeared innocuous. I chuckled and expressed appreciation for the 52 reference, yet I only opened the packaging when prompted. As I emptied the box and studied individual cards, I slowly digested what the gift was and what it took to create. To have so many people from each life chapter of my 52 years share their love and wish me well was overwhelming. Each was a personal message in their handwriting. There were memories of times shared, happy birthday messages, compliments, inspirational quotes, wordplay and artwork incorporating the card number and the number 52. I share so much with each of the people who helped create this gift, yet we experience this world uniquely. The similarity between these altered cards and people is fitting. Separately each person holds unique identities and value; together we embody a collective fabric of kinship and entwined existence.

 

We converge and emerge from each interaction altered.  We meet as the person we’ve become, influence each other, create new memories, and continually evolve.  This gift symbolizes and commemorates an abundance of relationships, moments and lasting impressions. A combination of giddiness and brimming tears sits with me days after receiving this gift, and I anticipate I’ll treasure this gift and the emotions it stirs the rest of my days.