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.

Navigating Life With MS Without My Mother

This is my truth. If my mom hadn’t died when she did, she would have been a comfort and helper when I was diagnosed with Multiple Sclerosis and felt so alone. She would have made a difference in millions of ways, but I’ll focus here on how being motherless relates to my MS. 

I was diagnosed 15 years after my mom died.  In hindsight, I’m certain that following her death I had an MS exacerbation characterized by extreme fatigue, depression, and surprising clumsiness. At the age of 23, I was executrix for her estate. It was a monumental responsibility organizing her funeral, managing her finances and legal affairs, selling her home, and dealing with everything a life suddenly cut short entails. 

I acknowledge my experience wasn’t harder or easier than others, it was just mine and a lot.  The heartbreaking irony was that I wanted and needed her help, yet she was the reason the job needed to be done, and she wasn’t there to comfort me. Regardless of the grief, tears, frustration, and inexperience, the job demanded I rise to the occasion.  

It was a lonely experience then, and I felt similarly isolated and unprepared to deal with my MS diagnosis.  Even though I was married and had friends, family, and colleagues, I felt an immense lack of support and guidance dealing with adjusting to living with MS.  None had MS or experience with any chronic illness. Worse, none were my mother who knew me so well and would have willingly helped without me asking. 

I felt like I was a project manager expected to know what I needed, and know and tell others how they could help. Add my feelings of guilt for being a problem to solve and a potential burden, and I felt a responsibility to reassure others I’d be fine and to comfort them for how my health condition triggered their emotions. Sometimes it was pride that kept me from showing vulnerability and accepting help, and sometimes I clearly saw others were unable to see beyond their own needs to help me with mine. 

My mother would have willingly and confidently stepped in without instruction, and I would have let her. 

In the thirty years since her passing and my fifteen years living with MS, I’ve learned, grown, and adapted more than I ever anticipated.  I’ve learned my desire for complete self-reliance in hopes of not being weak or burdening others shares the downside of cultivating isolation. 

I didn’t set out to find people to fulfill the mothering I lost, and I actively rejected anyone claiming they could. They weren’t people I didn’t need to explain myself to.  They didn’t know my strengths, challenges, and life history, and they weren’t going to love me no matter what.

I’m learning to appreciate people helping as honoring my mom, not replacing her. It takes a lot of relationships to cover the roles my mom provided for me, and I’m heartened when I realize I have many. I’ll notice when people show compassion in the way my mom did. When they describe me to others with pride. When they cheerlead and feel happy about my accomplishments. When they show compassion without pity. When they see my vulnerability and don’t think I’m weak. When they notice, anticipate and assist without me having to ask. When they look out for me and create calm in the chaos. When I’m angry, frustrated, and feeling lost, and they still love me.   

It takes self-awareness and humility to know what I need and be able to ask for help. I aim to find what I need when I need it, and I hope to contribute to others as I can. Sometimes I’m better at it than others, and I’m fine with accepting it as a lifelong effort. 

Lifelong Learning

When the kids return to school, traffic patterns change and I may follow the school bus on my morning commute to work.  There are fewer tourists in my town and fewer colleagues away on vacation. Stores and ad campaigns feature school supplies and products useful for students going back to school. “Back to School” season is a terrific annual reminder that learning doesn’t end after finishing school. I consider how much lifelong learning I’ve done and hope to attempt, the possibilities grow, and I’m motivated to plan more. 

A lot of learning comes naturally.  Something breaks, and I search online for a video on how to fix it. A health issue flares up, and I search for information on causes, symptoms, and treatments. Books and documentaries are suggested, and I’m intrigued enough to check them out. A social media feed pops up with something that teaches me something I didn’t know.  This can be a lot of learning, and it can be enough.

Life circumstances often compete with life goals, and they can hold us back from dreaming big. Multiple Sclerosis affects my health and beliefs about what’s possible for me, and so does aging, work, responsibilities, and finances. Mini doses of learning keep things interesting, and they can remind us of the possibilities.   

What excites me? What’s holding me back? How may I learn more about it?  

Options for learning abound. Consider local or virtual workshops, classes, and training. Conversations with friends and internet searches can lead to fantastic opportunities.  Dream big and work backward for what steps can lead there. Small steps today can change the trajectory of life and lead to big achievements later.  

Learning, growing, connecting, and contributing are tremendous activities for fulfillment. Being able to do some things may not be possible as we envision them, yet learning about them can broaden our perspective on how we could incorporate them into our lives. Ultimately, learning is not about the information, it’s about how it changes us. It changes how we perceive, understand, and interact in life. The possibilities alone are exciting! 

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.    

A Season of Convergence

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! 

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!

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.

The Changes in Me Since My MS Diagnosis: Kinship & Nurturing My Well-Being

Experiencing life events and trauma can change a person.  We all experience life milestones and challenges, yet they are so personal and timed differently for each of us that how we react or change is never the same.  Losing a loved one or experiencing an illness is different when experienced as a child, a young adult or as an older adult.  Our expectations and life skills are different at each point in our life, and what may be life changing for one may be life affirming for another.  

As I reflect on how being diagnosed with Multiple Sclerosis and living with symptoms has affected me, it's difficult for me to separate it from everything else I’ve experienced in life.  Generally, I think that having MS accelerated my aging and life milestones, but there’s no way to know since it's the only life I live. I think many of my qualities stayed consistent or amplified with age.  There are two things though that rise to the top for changes I’ve noticed in myself since being diagnosed with MS. One is a deeper feeling of kinship, and the other is developing a lifestyle of nurturing my well-being and relationships.  

Feeling Kinship with Others: I feel a kinship with others at a level that I didn’t know I lacked before my own diagnosis.  When I see people with illnesses or medical devices, I see them now as someone I could be someday instead of someone separate from me with disabilities.  I see their mobility devices as signs of strength rather than weakness.  I’m embarrassed to admit it, but my old reaction was one of feeling a sadness and sometimes pity for them. After my MS diagnosis, I realized I was terrified of losing my mobility.  I learned with time how much my identity and self-worth were tied up with my ability to be independent and be active.  I also learned how much I still have to offer if I lose my ability to be mobile and independent.  

I have since met quite a few people who rely on assistive devices and are not able to do all they did when they were younger.  I’ve seen their illnesses lead to a progression from using a cane to walker to wheelchair.  I’ve seen their gradual yet persistent lessening of muscle tone and ability to care for themselves. A few of my friends have passed away, and in their final months I’ve seen their bodies wasted to a level of frailty that seemed inconceivable to still supporting a person with clear cognition. 

My internal reaction has evolved to a feeling of kinship and respect. My external reaction has grown to incorporate always asking before helping. With others, we often only know what we see or hear from them.  Our assumptions of what they want or need are very often mistaken.  When trying to be helpful, we often get it wrong. By moving a chair, we may be sabotaging their plan to use the chair as a means to get where they plan to be. In an effort to solve a problem we see, we aren’t aware of all of the other factors they consider in each decision they make.  A denied offer to help is not rude. I see now how important it is to always respect a person’s independence, allow them to choose whether to accept assistance and honor their wishes.  

Nurturing My Well-being & Relationships:

The other huge change in the me since my diagnosis is what I consider when deciding when to slow down, how I spend money, what I want to do in my life and with whom I want to spend my time.  I still work hard and honor my commitments, but I also consider my health needs daily. If MS symptoms are acting up, I’ll take a hard look at my obligations and see where I can shift, delegate or complete tasks differently than I might prefer.  It’s a very real decision for me to consider if pushing myself to keep working or being somewhere is worth potentially leading to an MS exacerbation and disability.  I used to think work needed to come before my well-being and that if I could keep going, I had to keep going.  This question is a good litmus test to help me make wise decisions for my health.  

With my finances, I balance planning for the future while enjoying the present. I assume there’s not going to always be time or ability later, and knowing I’m embracing living now helps me believe I will look back on my life knowing I made the best decisions for my happiness.  

I consistently give myself permission to try new things and enjoy life in every phase, because tomorrow my health may not allow me to do it. It’s possible I may get fitter or feel better than I do now, but right now I may also be the healthiest and most active I’ll ever be for the remainder of my life. I’ve learned to appreciate my body at both its most slender and curviest.

I now let having fun take priority over my reluctance to appear silly.  I’ll dance or sing when I might not have before.  Singing karaoke would have terrified me in the past, but I pushed myself and had a lot of fun.  Photographs haven’t always been flattering, but I push myself to see them as proof I am enjoying life.  

And then there are the people.  Struggling with accepting my chronic illness motivated me to share more with people and ask more of them.  I have relationships that have grown incredibly richer for my willingness to show vulnerability and accept help.  I feared depending on people or showing weakness would lead to losing relationships and being rejected.  I wasn’t wrong.  I did lose relationships, and it was difficult, but the bonds that developed and remain are solid and fulfilling.  I’ve found that the people who are good for us need to feel needed and trusted.  When we withhold portions of ourselves, we keep ourselves from experiencing how good a relationship can be.  I’m less likely to hide my flaws now, and it enriches my relationships.  It feels good to embrace the aspects of my being that are less than perfect and own all of me.  

It’s possible that with normal aging and without chronic illness I might have changed to tend to my own needs better and feel more connected to other people.  It’s also possible I might have lived a long life without ever needing to change or learn more about others.  Regardless, I’m happy with these changes, and I feel they help me cope with living with MS in a way that feels satisfying and right for me.  

Prescription Coverage Drama and Trauma: It Breaks Me at Times

First, I’ll say it ended okay for now.  Hours later, I’m still feeling vulnerable and sad. Sad at my situation and sad for how much worse it is for many others.  

Step back to this morning at work.  I choked back silent sobs just wanting to get it together.  I’m in my office, standing at my desk and wiping away tears. I’ve just gotten off the phone with my super exclusive specialty pharmacy and copay assistance representative for my disease modifying medication.  I say super exclusive because this is the only pharmacy I’m allowed to use for this medication.  This is the most important medication I take that holds hope for slowing my Multiple Sclerosis disease progression.  It doesn’t cure anything, but it may keep my immune system from attacking my central nervous system as frequently as it would without the medication.  

My health care insurance changed the pharmacy I need to use.  That’s not the problem I’m struggling with right now.  Before it changed, the previous pharmacy phone rep told me that my copay assistance was denied because I’d used up all the funds for the year.  

This morning I was told that after my insurance pays the amount covered by my policy, my one-month supply of medication is $2,317.  Copay assistance provided by the manufacturer of the medication caps at $12,000 per year. The math doesn’t work out in my favor. I calculated that copay assistance will cover 4.8 months.  I need to take this every month, and that’s not even going to cover me for half a year. The rep keeps saying I need to be aware of this when I make an order because I’ll have out of pocket to pay.  

I know I’ll fare better if I stay calm and wait for final answers before getting upset.  My body doesn’t comply, and while I’m polite to the reps, I’m barely getting the words out – “Thank you for your help. What can I do?”

The co-pay assistance rep says she’ll make some calls and find out the balance of my co-pay assistance fund.  She promises to call me back by the end of the day. I thank her and hang up while choking back immanent sobbing.  

This sucks.  I hate that I have to deal with this.  I hate that my health is frustrating and I live in a nation where even with terrific insurance coverage I feel like a burden and at risk of needing to do without prescribed health care.  

My work day continues, and I talk to a few people to continue projects and discuss next steps completely unrelated to the experience I just had. I’m still wiping away a tear during one conversation and tell them, “I’m sorry, I have something unrelated I’m dealing with.” I continue to discuss the project as if I’m okay.

Within the hour the copay assistance rep calls me back and says I still have over $9,000 in my copay assistance fund.  I have no answer for why I was told that the fund was exhausted.  I have no promises that it won’t be a $2,317 debit to that account each month. I’m only assured that I have enough to provide my medication through the end of the calendar year.  For now I’m fine.

If I’m still taking this medication next January, I’ll need to ask each month if they’ve completed the “two-step process.”  She keeps saying this as if I know what that is. I finally interrupt and ask what is involved in the two-step process for ordering.  She explains it’s where the pharmacy determines the amount covered by my insurance, schedules a delivery date and then bills my copay assistance fund. Only then will they know if there is an out of pocket amount I owe and how much it is.  

I asked her if the pharmacy would call me back after knowing the amount due and let me know if my personal credit card is going to be charged beyond what I’m ready for.  She says yes. That’s what I have to go on right now. Best case, it keeps getting covered, magically the $2,317 per month is reduced after the copay assistance program pays, and I can keep using this medication next year.  Worst case, next year I’ll need to pay $15,805 out of pocket above and beyond what I pay for my health insurance.  If worst case comes to pass, I’ll more likely work with my neurologist to see if there’s another medication I can use that is covered or has a better copay assistance program. 

The details and drama of dealing with this is exhausting and stressful, and I’m sick of it.  I share this not to ask for pity or sympathy, but to spread awareness about how life is when living with an incurable disease not of my making. I wish I had the energy to advocate loudly for pharmaceutical medication reform. But it’s just too big and too much for me to do on top of taking care of my health, working full time and trying to live well. I wish I could distract myself with anger, but I’m too tired or not distanced enough to be angry. I hope to be able to do something productive with this.  I hope people sicker and less able to navigate bureaucracy can get what they need to be able to obtain the medications they need without spending down their life savings or declaring bankruptcy.  Even then, I understand our system isn’t likely to provide all they need. 

We need a better system. We need to care for our weakest and most vulnerable. I have insurance, aptitude and patience to deal with this, and it breaks me at times.  

Getting Organized and Staying Organized: It’s a Lifesaver When Living with a Chronic Illness

I love being organized. I love containers and labels. I love having my finances organized and being able to find paperwork when needed. It brings me a sense of peace to plan things, be prepared and know what to expect.  When everything has a place and is put away, it brings me joy.  Living with a chronic illness like Multiple Sclerosis can be the exact opposite of that. It’s unpredictable, it disrupts plans, it can be invisible, and often it doesn’t have a logical reason behind the symptoms it brings. It can be manageable, but it’s not curable.  Unlike my belongings, it can’t be fixed and controlled.

I know not everyone shares the love of organization that I have, but I promise you that small efforts into organizing tasks, time and belongings can make any person’s life less stressful. When keys are put in the same spot each time I get home, I don’t spend any time looking for them when I’m rushing out the door. When household goods like toilet paper are purchased before I’m down to the last roll, I don’t need to make a special trip to the store when I might be tired from a long day or experiencing MS fatigue. When I fill up the car’s gas tank when it’s half full, I won’t be late for an appointment because I needed to refuel on the way. If I bring snacks and water when I leave home, I’ll spend less money stopping somewhere to get them and I can control what I eat or drink. I have the option to get something different, but I won’t be forced to have something I don’t want. It takes less energy to stay organized than it does to deal with the chaos disorganization can cause, and putting effort into organization helps me live with MS fatigue with a semblance of grace. 

My days rarely go as planned.  There’s always something that comes up, and if I allow time for emergencies or unexpected opportunities, I’m less likely to get stressed about it. When my finances and home life are organized, I’m better able to roll with inconveniences instead of them disrupting my entire schedule. With MS, having an exacerbation can put everything on hold.  Needing to schedule doctor appointments, get daily steroid infusions to calm down the immune system, travel to clinic appointments, and focusing on recovery becomes a priority. Everything else gets pushed aside.  If I’m not organized, it can be costly and chaotic.  Bills paid late can incur interest and late payment fees. Missed deadlines can create consequences that increase stress even more.  Stress can contribute to MS exacerbations and symptoms, and it can become a downward spiral for our health.

But it’s hard to get organized in the first place. 

I’ve had my share of shame surrounding disorganized papers and things in my life.  When I inherited decades of paperwork from my mother after her death, I kept a lot of it in the attic.  When money was short, it was hard to stay on top of financial paperwork. As time passed and I lacked a good organization method for new papers coming into my home, the boxes of paperwork stored in the attic grew. These boxes held unimportant paper along with important documents and possible treasured keepsakes.  The idea of going through all of them was overwhelming and easy to ignore if I didn’t venture up the drop-down ladder to the attic. 

Along the way, I bought a book that guided me through tasks to complete to become financially organized.  It had assignments to do each week and promised complete financial organization within a year.  I followed it diligently, and the papers in my home along with my financial tracking became something of beauty to me.  The boxes in the attic remained untouched.  

Then I moved, and something needed to be done. My new home was one-fifth the square footage of my old place. I was embarrassed that I didn’t know what was in the boxes, nor could I recycle or trash them without going through them.  Luckily, I had two friends who never judge me poorly and are extremely generous. They offered to help, and I’m so grateful that I overcame my embarrassment and accepted it.  

I think there were about 30 boxes that we took directly to a friend’s garage.  The following Friday night, we met for dinner and afterward each brought a martini to my friend’s garage where we spent five hours going through boxes.  My instructions were to sort through things into recycling, donation, trash and keepsakes. We would identify anything that might look important and hold it up so I could say whether I wanted to keep it or not. As stressful and overwhelming as the project seemed to me to do alone, it ended up being a really productive and fun evening.  We laughed over old photos, drawings and notes, and we told stories about ourselves.  By the end of the evening, we’d whittled the number of boxes for me to keep down to five that could fit into my new place and be dealt with another time. That weekend, we took the paperwork to shred to a local free shred event, and we dropped off items for donation at a local charity.  Trash was picked up with the garbage within a week.  What would have taken me months to go through and caused a lot of stress became an opportunity to connect with friends and make a fun memory.  

For tasks that need to be done regularly, I prefer to do them throughout the week.  Growing up, my family’s method for cleaning the house was to do an all hands-on deck cleaning session once a week. Sure, we cleaned up the kitchen each night and tidied up after ourselves, but a full-home clean would take a few hours each Saturday morning. I hated it.  It felt like punishment, and it had to be done before we could do anything fun. I learned years later of a method where cleaning could take 15 minutes per day, and I joyfully converted my approach.  Now I use that method for a lot of things I need to do.  I don’t combine everything into one session; I split up chores into small fairly quick tasks. Some are maintenance done daily or weekly, and others are done monthly, seasonally or yearly.  I wish I had a cleaning person, but for now I don’t feel comfortable with the expense. With this approach, I’m able to keep my place tidy and company ready within a few minutes.  This works well with my MS fatigue issues, since accomplishing something in 15 minutes and resting is doable.  Saving it to do all at once can be exhausting, it might limit my ability to do anything else that day, and it might require recovery time beyond the one day.  

How to get organized: There are lots of good reasons to be organized, but that doesn’t always lead to action.  I like the specifics of what I can do to make my life easier.

1. Enlist help. This is especially useful for big projects that only need to be done once.
2. Break up tasks into small and consistent routines. Success builds on success.  
3. Do one thing at a time. Don’t worry about everything, just focus on one thing to improve.  Getting overwhelmed will just lead to inaction and no improvement at all. Any improvement is better than none. 
4. Cleaning in five to 15-minute spurts rather than long sessions can accomplish a lot while accommodating fatigue issues. 
5. Pick the one thing that causes the most stress and focus on how it could be streamlined. The library and internet offer a wealth of suggestions and resources.  Find one that makes sense and try it.  Keep it if it works, and try something else if it doesn’t.  
6. Consider organization as a lifelong component of living well. It might take five years to get each aspect of a life more organized. As life, health and obligations change, so will our organization methods.  

Having control over things in life builds confidence and eases stress.  Chronic illnesses like MS can be unpredictable and suddenly disrupt our plans significantly.  Being organized with belongings and doing tasks as part of a routine ease stress.   Knowing what needs to be done and where to find things makes it easy for friends and family to help us when called upon.  Tasks become more difficult when we don’t feel well, and being organized can allow us focus on our health and recovery. If things are organized and planned, then impromptu things don’t worry me. I can add them without overloading myself. I know for certain that being organized enriches my life and allows me to say yes to more experiences.  

• For information on my financial organization, see Rethinking Wealth & Organizing for Financial Wellness
• For my organization methods, see my post Make Life Easier to Get More Done and Lessen Stress 
• For how I prepare and organize for neurologist appointments, refer to Getting the Most Out of My Neurologist Visits