Holiday Wellness Bingo Card

Each year, the holiday season is a time of increased tasks, deadlines, and obligations. It can be stressful doing everything I need to do and want to do. Add managing my health issues with Multiple Sclerosis, and it can get overwhelming. I’d love it if the satisfaction of nurturing my health and sanity was enough to maintain healthy habits as its own reward, but it hasn’t been. Temptation abounds, and denying myself can feel punishing at times. I strive to enjoy both in healthy doses.

Over the years, I’ve trimmed down and streamlined seasonal tasks to reduce effort and stress. This year, I want to infuse fun with a Bingo card. By choosing items that support my personal goals and having a deadline to complete them, I’ll be more likely to do them.

My goals are to encourage nutrition, physical fitness, connection, non-phone related activities, pampering, and things that reduce stress and MS symptoms. Some items are a one-and-done, while others involve creating routines.

In choosing them, I made sure to include a frequency that might be challenging for me but doable. I recognize that doing something every day is tough to accomplish, but three to five days per week allows for progress and success. Building in flexibility is especially helpful when my schedule is disrupted or I’m not feeling great. I’m more likely to meet or exceed my goals with a lower threshold than I am to keep doing it if I’ve failed after aiming for perfection.

I’ve decided to allow more than two months for this Bingo card, because it’s often hard to do something in 30 days within the confines of a single month. If I span months, I’m much more likely to be successful. It also allows me to bridge this year into next, since having a deadline of New Year’s Day can get stressful.  I want to be successful with this, not create more stress.  

MS spasticity has been increasing for me lately, and it’s a priority for me to do more now. It’s a frustrating MS symptom that causes my calf muscles to stiffen and hurt. Spasticity is when nerves fire messages more than is normal, and it can cause muscles to live in a constant state of tension. That stress on the muscles can seem like an easy way to build muscles, but it’s not. It reduces muscle flexibility, which is imperative for long-term well-being and mobility. Medication isn’t doing enough to prevent it for me, but stretching, massage, hydration, and magnesium oil help. I’d like to combat it better, so I’ve included a few things in my Bingo card that should help.  One is stretching multiple times throughout the day. I’ve chosen to use my watch’s hourly reminder to stand as a reminder to stretch. Another tactic is to massage my legs throughout the week. It’s not pleasant for me, since it means massaging areas that hurt and are painful when touched. My hope is to reduce tightness from spasticity and ultimately minimize my reluctance and pain.

The 25 squares I’ve chosen to include in my Holiday Wellness Bingo card are:

1. Bingo Center Square: Make a bingo card and get credit with the center square

2. Stretch calves average 6x per day 30 days.

3. Massage legs 4x per week for 30 days

4. Drink 8 glasses of water per day for 30 days.

5. Drink Veggie & Fruit smoothies 4x per week for 30 days.

6. Make a large pot of stew and put half of it in the freezer for future meals.

7. Create a calendar with key dates & commitments: I created a calendar that spans November through the middle of January so that I can get a feel for how much time there is. I’m including deadlines for shipping gifts and sending cards, as well as putting up decorations, gatherings to attend, and other commitments.

8. Write a letter.

9. Reconnect with an old friend.

10. Submit medical expenses for insurance reimbursement: I need to do this, I’m avoiding it, and I’m more likely to get it done if I get credit on my Bingo card!

11. Track gift expenses: This is good for financial management.

12. Bake something: This will encourage me to make time for this. While I like baking, it tends to be one of the first optional things that gets cut when I’m busy.

13. Take a beach walk: This will help me slow down, enjoy the outdoors, and improve my physical and mental health.

14. Read a book (or listen to an audiobook): This will help me expand my focus and provide a break from daily stress.

15. Dry brush & cold-water blast 5x per week – These improve circulation, and they’re good for general health. Gently dry brushing before a shower helps with exfoliation, circulation, and pampering. I’m not likely to do a cold plunge, but a quick blast of cold water at the end of a shower feels like a decent substitute.

16. Moisturize full body 3x per week – This is pampering, and it’s a good opportunity to use magnesium oil to help combat spasticity.

17. Mani/Pedi: While I’m good with keeping a manicure, pedicures tend to get missed during the winter months. This will be a nice pampering effort.

18. Listen to two MS Focus podcasts – I always appreciate them, but I often listen to news or fluff. Continuing to learn what’s new in MS developments and hearing other perspectives help me stay motivated and informed.

19. Purge and donate clothes – Some clothing, costume jewelry, and shoes aren’t getting worn or don’t work for me anymore. Someone else could use them, and I can use the space.

20. Grant myself grace: This is one I could use all the time. Putting it in the Bingo card is intended to help me remember.

21. Make three mocktail recipes: This is an attempt to add a feeling of pampering myself in a healthy way and practicing moderation when the holiday season encourages more frequent alcohol temptations.

22. Make three fruit-based healthy desserts: This is intended to inspire creativity and fulfillment when a lot of treats are not nutritious.

23. Journal 4 things per week that were new to me or inspired me: People are amazing, and being open to new perspectives is exciting for me. Writing them down will be a great way to review them later.

24. Strength training 12x in 30 days: Getting stronger is recommended for all of us as we age. It’s easy for me to let it slide. Setting this goal will keep me motivated.

25. Take lunch breaks @ work 16x in 30 days: I often work through lunch, and setting this goal will be a tough one for me to meet. I’m ready to try, though!

While this card is unique to my challenges and goals, I hope it spurs ideas for what would be good for you. If you make a Bingo Card for yourself and you’re willing to share, I’d love to know what you include!

Establishing Safety Nets

Back-up plans and safety nets ease my worries. If I know I have options and support, my stresses for the future can be put on the back burner. 

Which safety nets do I have control over? Which are vulnerable and might not be reliable? How strong are my safety nets, and where are the gaps? 

There are safety nets for daily needs and long-term needs. They’re useful for health care, housing, finances, friendship, physical health, and mental well-being. 

Safety nets aren’t just for taking care of my needs; they’re also for taking care of the people and things relying on me. With colleagues, I share what I know and how I navigate issues. The more they know, the better they are for having backup plans if I’m not available temporarily or permanently. Mentoring and sharing help reduce stress for things I do with them and for them, and it helps all of us relax. 

When I was diagnosed with MS at almost 38 years old, I feared MS progression would make me unable to work, compromise my health insurance, and lead to immense difficulty surviving. The statistics said I would likely need mobility aids within ten years. Suggestions were to have a single-level home by the age of 55.

The nature of my MS lesions, the frequency of my MS exacerbations, and fear of the unknown led me to believe it was very likely I’d have difficulty walking as my MS progressed. 

That was 17 years ago. I’m nearing 55 years old, I work full time in a job that is the highest level of my career, and I live in a home with stairs that isn’t easily conducive to needing a mobility aid.  MS symptoms take effort to manage, but I still have full mobility.

I’ve decided in life to plan for the range of possibilities, but I don’t want to skip phases out of fear. That said, I do have vague backup plans. If tomorrow I woke up unable to walk independently, I could have a chair lift installed on the stairs pretty quickly. I have people who would be willing to help. 

When I was younger, I had a car with a manual transmission, and I could navigate the stick shift just fine. Then I hurt my Achilles, and recovery meant I had to keep off that foot.  I navigated work, home, and shopping on foot using crutches and a knee scooter.  I couldn’t drive my car anymore. Fortunately, I had access to a car with an automatic transmission, and I could still get to work. While it was a huge inconvenience, it was doable. It was temporary, but it was a terrific learning lesson for how much of my life relies on my mobility and energy level. Just hopping from the coffee maker to the sink, coffee beans, and mugs in different areas of the kitchen showed me how much walking my morning coffee routine required. 

I think about my routines with this in mind. Can I keep things together and reduce effort? How would I change things today if I knew I couldn’t walk tomorrow?

I’d have options and support for short-term accommodations, and I have options for adapting to long-term needs. Regularly monitoring how I’m doing will help me decide if and when I need to make a change at some point. 

Financial safety nets vary widely and depend on each person’s needs. 

One safety net I wish I’d set up is a long-term care insurance plan. Medicare doesn’t cover long-term care, but Medicaid does. To access Medicaid, a person needs to meet strict financial income and asset requirements. People I’ve known who had long-term care insurance were able to move to places where their needs could be met without a significant financial burden. 

I looked into it a few times, and the cost for me to get long-term care insurance now would be really expensive. Since I’ve already been diagnosed with a chronic illness, it would be tough to afford. If you don’t have a diagnosis yet and you’re able to access a long-term care plan, know that I regret not getting it. It would have been a safety net that hopefully I’ll never need, but it would have reduced the stress of planning for my future.

I’m grateful for the career change I made at age 30. I started a job where the paycheck required me to contribute to a retirement plan in addition to Social Security contributions. That requirement helped me establish a safety net that is still growing. Social security payments at full retirement age don’t come close to what I make working full time. Forced retirement plan contributions have allowed me to have the safety net of an income when I’m older that will cover my living expenses. 

Another safety net I’m working to create is covering expenses if I ever have a gap in health insurance.  If I leave the workforce willingly or unwillingly before I qualify for Medicare, health insurance will be a significant expense. I’ve started putting part of my paycheck into a deferred compensation plan. I don’t pay income taxes on it now, and in a few years, it will be available to help pay for health insurance and health care if I need it. It gives me options and eases my worries for a very expensive part of taking care of me.

These are just a few of the safety nets I work to establish and maintain. They’re not fun, they take time, effort, and money, and it’s really tough when money always seems tight.  When I was younger, I wouldn’t have thought I would be able to ever afford some of these options. It was slow going, and I often felt I started too late. As much as I could have done better planning, I started when I could, and it’s made a difference. They help me feel better prepared for the future, whatever it holds.

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.