I’m 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: 

• Dealing with Insurance Denials: A Necessary Skill When Living With a Chronic Illness, October 3, 2017
• Necessary Medication and Politics: The Devastation Falls on Patients. January 30, 2018
• Necessary Medications and Politics: Part 2, February 28, 2018
• Prescription Coverage Drama and Trauma: It Breaks Me at Times, August 29, 2019

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 

• Creating Some Order in the Medical Billing Chaos, September 11, 2016

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.    

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.