Tuesday, September 10, 2019

My MS Number: We Became Experts at Adapting to Change Before We Knew We Had MS

I’ve started thinking it should be the standard to have our time with Multiple Sclerosis described with two numbers.  It would be similar to blood pressure readings where two numbers have meaning on their own but give a fuller picture of a person’s health when described together. Our time living with MS could be described as the number of years since we were diagnosed over the number of years we estimate we’ve been living with MS.  

For me, I was diagnosed 11 years ago, and I can estimate my first exacerbation was likely 27 years ago.  This puts my MS number as 11 over 27.  Short hand, it would be written 11/27 MS yrs.

Often when meeting new people, we’re asked how long we’ve had MS.  Those who are more informed tend to ask how long since we were diagnosed.  Given many of us with MS have lived with it a long time before we know it and are diagnosed, those years prior to diagnosis take a lot of words and time to explain. At times it feels like I’m slowing the conversation and forcing someone to listen to a long explanation.  It doesn’t help that the words diagnosis and exacerbation have a lot of syllables and are a mouthful to say in any conversation.

Those 16 years between what I now realize was an exacerbation and the year I was diagnosed were filled with odd sensations, loss of control of hands and feet, bladder and bowel issues, and a ridiculous amount of fatigue that kept me exhausted for years.  All those years, I thought I was healthy and didn’t know they indicated something seriously wrong with my health.  I thought it might just be normal, because symptoms were sporadic or nebulous. I had no way of knowing that my exhaustion wasn’t solely because I was fighting off a cold or stressed out.  

In those 16 years living with MS but not knowing I was, I became an expert on adapting to change without realizing I was adapting to living life with a chronic illness.  

For my fatigue, I put a lot of effort into outsmarting my energy level so that I could get more done with less effort.  I’d organize every aspect of my life.  My schedule, my professional obligations, my home, my finances and holidays all had lists and systems in place to ensure I kept up with everything I wanted done.  

For dropping things or tripping, I could only conclude that I must have been distracted.  I’d vow to pay more attention.  I’d plan to grasp things with intention and lift my feet purposefully.

Bladder and bowel issues were addressed with diet and research.  I’d follow the recommendations available at the library, online and suggested by friends to see if any of them worked.  Sometimes they helped and sometimes they didn’t.  Eventually the exacerbation would subside, and I’d attribute the problems to a disruption in my routine, eating differently or not getting enough fiber.  Looking back, it’s a bit crazy I didn’t realize it wasn’t normal, but it would always improve after a while.  How could I know when I don’t have another body exactly like mine to compare it to?

I, along with many others with MS, unknowingly adapted to MS symptoms just to keep on keeping on.  The relief of having a diagnosis allowed me to add one more crucial factor to consider when making decisions.  The benefit and the burden of this knowledge is an ongoing fact of MS living.  

Pre-diagnosis, I might stay home all weekend to rest and feel like I was deficient.  Post-diagnosis, I not only had a valid reason to rest but a compulsion to rest for fear of causing an exacerbation.  Thankfully, I finally had something that my friends, family and I knew about me that might offset the judgments that I was lazy, didn’t care or was making an excuse to avoid something.  Those closest to me looked out for me and pressured me to do less. The expectations for me and from myself now had a new lense through which my performance was measured.  It is both liberating and confining.  

Post-diagnosis, my challenge has been to find a sweet spot of balance between activity and rest.  Perspective, healthful habits, continual learning and adapting helps. At time I can do my best, and I still won’t be able to adapt enough for the change needed for the circumstances. It doesn’t mean I’m unable to deal with change.  It just means I won’t be perfect in every situation. Notice it, acknowledge it, repair any damage to others I may have caused, learn from it, and move on.  I can’t do better than my best.  That’s enough.

Tuesday, September 3, 2019

Brazen Living's Roundup: Good Stuff!

Completely in keeping with my desire to say yes to life and try new things, I said yes when Rosemary of Brazen Living asked me to give my perspective on trying new things.  She sought me out after reading my article, Trying New Things: The Rewards Usually Outweigh the Risk.  She put together a roundup of viewpoints and advice on pushing boundaries and trying new things.  

Check out Rosemary's Brazen Living roundup here, and check out my original post about trapeze here. Enjoy life, all!

Thursday, August 29, 2019

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.  

Tuesday, August 6, 2019

The Value of Doing Nothing: Same Thing, Different Feel

It’s interesting to me that the same task can feel stressful sometimes and relaxing others. It really shows that it’s not about what I’m doing, rather it’s how I feel when I’m anticipating or doing it. It’s how I judge the task in the moment.  

Needing to cook dinner after a long workday may feel like one more burdensome thing that needs to be done, while spending hours in the kitchen baking or creating a new dish on a weekend might be a therapeutic activity resembling meditation for the focus and relaxation I feel.
The same can be true for a bike ride or jog where I’m trying to perform at a certain pace or complete a set distance.  Doing the same distance with no expectations might feel like an easy activity.  What amazes me is the pace might only be a mile or two less per hour for it to feel relaxing.  While I love pushing myself and feeling strong for the accomplishments, I’m realizing that including the slower pace at times is better for me than continuing to push myself. It’s also clear that periodic no-movement days are good for me.  
When someone asks what I did all day and I say nothing, I often realize it’s not true.  I did do something. Most of the time, I’ve showered, I made something to eat, I napped, and I watched television that entertained me. 
I’m realizing I really need to think of these slow-moving episodes as necessary recovery and recharging.  I need to do this not because I’m deluding myself or making excuses, rather I need to place value on what my body needs to keep performing. While this is true for any human, it’s especially true for me given Multiple Sclerosis presents itself in my life as almost constant fatigue. Because it’s constant, I need to push through the fatigue to work, be active and participate in life. This is common for many people with MS and other chronic conditions. 
It’s often a source of frustration and requires intentional kindness toward myself to focus on what my body can do instead of what it can’t.  The knowledge that I can push myself to the point where it triggers my immune system to start attacking my brain and spinal cord is scary. The reality is that I put a lot of effort into self-care, and my immune system continues to attack periodically. 
Thus, it’s mandatory for me to include relaxing and recovery in my life to set myself up for the best health prognosis possible. This isn’t unique to me or anyone else, it’s just that the consequences may be more severe if I skip rest days. Still, it feels shameful to have days where I accomplish very little. It feels lazy, and laziness is ingrained in my psyche as one of the worst things a person can be.  

It’s imperative that I view recovery days as productive. If I view it as a wasted day, it stresses me out. If I view it as necessary and good health management, I can relax into the day and enjoy it.  There’s value in doing nothing.  When I recognize doing nothing as an accomplishment that improves my health,  I lose the guilt and feel better about my myself.

Sunday, July 7, 2019

For the Love of Biking – It Really Can Be for Everyone

In a conversation with coworkers years ago, one person reflected on his summers spent in their backyard pool in California. I responded with excitement and jealousy that he had his own pool when all I had was a bike!  Another coworker who grew up in Hong Kong, exclaimed with awe, “You had a bike?!?”
Wow.  I laughed at my own ignorance to my privilege.  To think she grew up in a large city and didn’t have a bike at all made me realize just how special it was that I could spend my summers biking and exploring. If I’d had to choose between a backyard pool and a bike, I think in hindsight a bike would have been a better choice for me.  
As a child, my bike was my freedom. It allowed my sister and me to spend summer days at the pool in a neighboring town without limitation of our parents’ schedules. We biked to get ice cream, eat lunch in the town square and even to rent canoes.  We’d practice riding without hands and see how far we could go.  Our bikes were extensions of ourselves throughout the summer.
Once we could drive, bikes temporarily lost their appeal for transportation.  Enter my college years where I didn’t have a car, and my bike allowed me to get to classes and work.  Every time I allowed less time for travel meant my fitness benefited from pedaling faster to get there in time.  
As an adult, I’ve enjoyed mountain biking and group rides immensely.  Participating in sprint and Olympic distance triathlons have been rewarding experiences. This summer is a summer for biking for me.  I signed up for the two-day Seattle to Portland bicycle ride, and I’m excited to do what is a bucket list experience for me.  Being able to train and do the ride with friends is gratifying for the camaraderie beyond the health benefits.  
Bicycling suits me well given the impacts Multiple Sclerosis has created in my spinal cord.  I love jogging and manage extremely well, but bicycling allows me to continue when my feet lose feeling and coordination. Hills create natural intervals where I can put forth effort and rest on the downhill to best leverage my energy. Fatigue lessens and I sleep better when I’m active.  

I have a new bike! 

This summer, I was fortunate to have been gifted a bike from the organization Meat Fight.  I love my new light and zippy road bike.  It allows me to go faster and be more comfortable while riding.  Having an expert watch me ride, ask questions and adjust the bike to me was fantastic for improving my experience cycling. Through their Meat Fight’s Meat Bike program, they give bikes to people with MS.  Becoming a part of this group is fantastic for connecting with people with MS of every level of active from extreme endurance events to beginners wanting to start riding.  Bikers ride all types of bicycles ranging from road bikes to recumbent trikes to hand cycles. 

Bike options for all abilities

The more I pay attention on the trails and online, I see that bicycling can be accessible to anyone these days.  The options available accommodate a lot of health issues that result from aging, chronic conditions and disability.  
Recumbent bikes are great when balance might be an issue. Electric-assist bikes can be useful when wanting flexibility and back up for pedaling.  Tandem bikes come in both side-by-side and in-line, and they can be excellent options if vison is impaired. Handcycle bikes are propelled using a person’s upper body instead of their legs.  
When disability advances beyond being able to pedal solo or at all, there are bikes with wheelchair tandem setups that allow people to sit in front of the cyclist pedaling.  An organization near me, Sequim Wheelers, provides free bike rides to elderly and disabled community members, including children.  When I saw this, it heartened me to know that people who are not able to enjoy trails on bikes under their own power can now do so. The fresh air on the face, the beauty of the landscape, socializing with others in an active, outdoors setting – these can be available to everyone.  
I’m encouraged to know that cycling can be adapted to suit my needs should my abilities change with age and Multiple Sclerosis progression. Being outside, active, and among friends improves my health and maintains my well-being mentally and physically.   It comforts me to know this hobby can change and adapt with whatever the future brings. The only limitations are my ego and perspective. 

Tuesday, June 4, 2019

Music Gets Me Through: Shaping My Outlook with Intention

The artistry of words inspires me greatly. The ability to express ideas and emotions critically with nuance and creativity moves me to feel deeply. Add rhythm and melody to the poetry of song lyrics, and it becomes something I can use for managing my wellbeing. 
Music is especially useful for coping with any challenge, because it has the ability to replace the thoughts going through my head. If I can recognize when looping thoughts are taking over my mind and mood, I can change my attitude and outlook with music.  
Artistry that speaks to me changes given where I am in my life and what I’m experiencing.  It may feel completely where I’m at and validate me, and it may give hope for where I want to be. 
A soft crooning love song can bring tears of sadness for my losses and tears of gratitude for all I still have.  It can be a salve of melancholy for what is slipping away or a provoking plea for getting my needs met.
When I’m angry or frustrated, a nasally punk rock vent can feel liberating.  Singing about unfairness or injustice can help me get mad and motivated enough to literally get up and keep going.   
I want music that helps me feel strong.  I want lyrics that acknowledge hardships yet tell my truth: I can be a victim, but I don’t have to be powerless over my circumstances and future.  I want songs I can sing along with loudly that recognize I’m taking a hit but still deserve to live well and feel worthy. I want songs that induce power within me to know I will keep finding ways to keep going and like my life.
None of the songs that resonate with me are about living with Multiple Sclerosis or another illness, but it’s easy to substitute my body’s condition for whatever it is causing grief in a song. 
Each person’s songs will be different for them.  Our musical preferences, age, point in life and the condition we’re in will shape how we take in a song.  I’m sharing a few of my songs just to show how they help me.  I strongly encourage people to create their own go-to playlists.  I have different sets of songs for different purposes. So far, I’ve created playlists titled Love, Dance, Jogging, Kick Butt, Yoga, Happy Songs and even one for Breaking Up & Moving On.
The first song that I associated with my chronic condition of living with MS was Pink’s “So What.”  It was released in August 2008, a short time after I was diagnosed with MS.  It gave me hope when I felt really crummy.  I still love it for feeling mad, strong and rebellious. MS, you’re a jerk, but I’m a metaphorical rock star.  While you let me fall and I’m having a hard time right now, I’m going to show you.  You’ve knocked me down, but I’m getting up and I will thrive again.
My Body” by Young the Giant feels so close to my experience when my body is frustrating me and I want to feel strong.  I remember it playing while I learned to trapeze.  In that moment, I was defying my body’s tendency to restrict activities, and I was actually flying from a trapeze bar to a catcher! I still can sing along to the song at times and have it apply perfectly to how I feel:
My body tells me no!
But I won't quit
'Cuz I want more, 'cuz I want more

When I need a song to express how I accept the contradictions of life and rejoice in them to shape my life, I turn to REM’s “I Believe.” A scattered train of thought, clever in transition and hugely meaningful, it expresses for me the challenges of living in a messy world with a messy health condition but believing in good things and a better future.
Born to Run” by American Authors expresses my eagerness to take all I can from where I am in each moment.  It’s greedy and empowering with a positive vibe. I may lose the ability to physically run someday, and I’m going to do all I can while I still can. 
I could list songs for days, but I’ll wrap up with an oldie from my childhood that I’ve loved always: “Anticipation” by Carly Simon.  No matter what my life holds right now, I want to enjoy it.  We are always living amidst what will become “the good old days.”

Sunday, May 5, 2019

My Mother's Lasting Influence

As a young child wrapped in my mother’s arms, I’d hear her ask me, “What am I going to do with you?”
I’d answer in tempo with the script we’d created, “Hug me, and kiss me and love me forever.”  She’d squeeze me harder while kissing the top of my head, and I knew she would. 
She died suddenly at the age of 47, and she never knew I had Multiple Sclerosis. This was 15 years before I was diagnosed with MS, yet she’s been a constant companion as I’ve navigated my life in general and the challenges I face living with MS.
Throughout the past 25 years, I’ve drawn upon her strength and quiet grace when I’m feeling fearful and untethered. She wasn’t without her own challenges, and seeing her life through an adult lens has helped me appreciate how amazing she was.  I was lucky. I had that special relationship of a mother and child where I felt completely loved and supported.  It was so pure, it could embarrass me to have her gush about me to her friends. Yet I held an arrogant confidence that if ever my life fell apart, my mom would be there to help me and she’d be glad she could. 
When she died, it was a glaring realization to me that the one person I felt completely at ease asking for help was gone. After my MS diagnosis, I felt like the one person I needed most and who would have been the most helpful to me wasn’t there.  I didn’t realize at either time that in my 23 years with her she’d become someone who would continue to inspire and guide me throughout my life.  Her physical absence was real, but her strong presence in my thoughts gave comfort and pushed me to continue learning, living and connecting when so much was uncertain.  
I have a lot of wonderfully kind, compassionate and supportive people in my life, and they help me through so much.  At times they treat me in a way that resembles the unconditional love and compassion I felt from my mother.  I’ve had people make suggestions and show concern while worrying they’re overstepping the boundaries of our relationship.  These instances warm my heart profoundly.  They’ve shown me the capacity for kindness and generosity people have even when they aren’t responsible for my wellbeing.  I could dismiss my mother’s influence as required maternal behavior.  I’ve learned though that not all people are hardwired to give selflessly.  
The act of supporting and comforting others is truly a thing to nurture and cherish. It lives beyond the moments we share and shapes our ability to persevere. My mother’s influence many years after her passing is proof for me.  She continues to guide my actions, she inspires me to be someone who gives love and support, and she encourages me to live a life of contribution where I’m able.  Her love endures as a fact of my existence and influences all I do.