My Interview With Health.com

In January 2016, Health.com interviewed me for an article, "6 People Explain What It’s Really Like to Live With MS." A small portion of it was included in the article, and I'm posting the full interview here. Reflecting on my responses from almost a year ago, I'd say my answers still ring true for me today.

Can you describe your first symptoms? Were you ever misdiagnosed before learning it was MS?

The symptoms that led to my MS diagnosis were extreme fatigue and numbness. The first time I realized something was off was when I leaned forward at my desk and couldn’t feel the keyboard pushing against my belly. The tingly numbness progressively expanded within a few days to include all of my body from the bra-line down to my toes.  I could walk, but I tripped more and fell a few times. I assumed all would be fine, and I even ran a 12K race with fatigue and a numb body.

I also realized after the fact that the fatigue I had been experiencing for years wasn't normal. I just thought each time I was exhausted that I was fighting a cold, stressed, or working hard and needed to rest. I also realize now that constipation was an early MS symptom for me. 

I wasn’t ever misdiagnosed prior to learning it was MS. The results from MRIs of my spine and a spinal tap made it clear that I had MS and led to a diagnosis within a month of my first known symptoms. The number of lesions that were old and not currently active in my spinal cord made it obvious to my neurologist that I’d had MS for years. 

When did you first receive your diagnosis? What was it like to hear?

My first known exacerbation involved three days at the overcrowded emergency room at Harborview Medical Center, a trauma center in Seattle, where I was told that the chance of me having MS was low. After a spinal tap, MRIs in the middle of the night, eye tests, and a round of steroid infusions, I was released with instructions to see a neurologist.

My diagnosis occurred at a scheduled neurologist appointment the morning of my son’s graduation. It was a complete shock to me, because I’d thought of myself as very healthy. I’d assumed the numbness I’d had would turn out to be explained by something simple and curable like sciatica. I knew nothing about MS, so my first reaction was to ask the doctor if she was sure (yes) and then if MS is fatal (no).  The neurologist acted as though it was no big deal to tell me I had MS, gave me information on four disease modifying medications to review to decide which one to take, suggested I sign up for Bike MS, and gave me the book, “MS and Your Feelings: Handling the Ups and Downs of Multiple Sclerosis, ” by Allison Shadday. She also told me to look online at the National MS Society webpage to answer any questions I had.  I was dumbfounded. 

During my son’s graduation later that day, seeing elderly people with walkers and moving slowly held an entirely new perspective for me. I was scared for what my future held, and I just wanted to hold it together to celebrate my son’s big day. 

The next day I began searching the web and library for any information I could find about MS. I called the NMSS and joined the local self-help group. 

What is the biggest day-to-day challenge you experience?

My biggest challenge is definitely fatigue. I diligently monitor my energy level, and I take it seriously when it dips to the point of feeling like regular living is like trying to walk through water. I monitor what makes me feel energized and what taxes me, and I budget my activities and energy to maximize my productivity and happiness. 

How about some of your happiest, most positive realizations or memories since being diagnosed?

The biggest shift in thinking I had that helped me transition from feeling betrayed by my body to feeling compassion for myself was to recognize that my body isn’t my enemy. My body is great at a lot of things, and my immune system sucks at distinguishing between foreign invaders and the insulation on my nerves.

Lots of people talk about having MS as struggling with MS, fighting MS, or battling MS. And that may work great for them, but it never resonated with me. Constantly fighting seemed exhausting to me when I was already experiencing extreme fatigue. And fighting myself made me feel powerless. Thinking of my body as a buddy that is doing the best she can made me feel like I had some control. It made me feel like I could help my body continue to do as much as possible for as long as possible. 

In the past eight years I learned to worry less about what can go wrong, and I look forward to what can go right even if things don’t go my way. Specific things I’ve done since being diagnosed that brought me joy were doing yoga, learning to trapeze, singing karaoke, visiting France, walking a marathon, changing my career, and starting a blog, “Keep Doing What You’re Doing,” at http://stacieprada.blogspot.com.  MSAA has been terrific at supporting my writing and providing thought provoking themes to consider. Above all else, I cherish the personal relationships that have developed and strengthened since my diagnosis. 

What are the biggest life changes you've made to accommodate for the disease?

I’ve started making myself a priority in my life. I learned that diminishing my health and putting work or other people’s needs ahead of my own contributed to my MS disease progression. I learned that pushing myself when I’m tired or ignoring symptoms has a cost that I’m not willing to pay with my mobility or future health. I now make time to enjoy my life today and balance it with planning for my future.  And when I can’t do everything I want to do, I accept it without guilt as a low price to pay for my future quality of life.  

What are the biggest misconceptions about living with MS?

I think people want to believe that what works well for one person will work for every person and that if one person can do it than everyone can. We’re all different, and MS affects us all differently. While we can share our experiences and learn from each other, it’s all trial and error in figuring out how our bodies can best cope and thrive with MS. I’ve also learned that what worked for me last year may not work for me today.  It’s constant adaptation. 

What is your mantra for staying positive and strong while living with MS?

When I feel low my mantra is, “I will feel good again, I will feel good again, I will feel good again.”  I also tell myself, “I don’t know what I need to learn or think about differently to live with this, but it’ll happen.” It helps me to stay open to lessons, believing they’re around us all the time. I trust that when I’m ready to learn the lesson I need, the opportunity will be there for me.

I also remind myself that things can always be worse and that my life is good.  I try to change what I can, accommodate what I can’t by making changes in my life, and look at challenges with a different perspective to feel better. 

What advice would you give to someone newly diagnosed

It’s more of an approach than a sound bite since each person is different, is in a different place in their lives, and reacts to an MS diagnosis differently.  That said, I like them to know that they don’t need to figure out forever right now.  If symptoms came and went prior to diagnosis, then they’ll likely continue to come and go.  It will get better, and their life may even get great.

I actually wrote a blog post specifically on this topic, Pay It Forward: Talking To People Newly Diagnosed With MS.  


From the responses I provided to the interview questions, Health.com wrote the following:

"It’s all trial and error in figuring out how our bodies can best cope." — Stacie Prada, 45, county treasurer

  
The first signs of fatigue and numbness eight years ago didn't phase Prada. "I just thought each time I was exhausted that I was fighting a cold, stressed, or working hard and needed to rest," she says. "I assumed all would be fine, and I even ran a 12K race with fatigue and a numb body."

On the morning of her son's graduation, Prada finally saw a specialist. "The neurologist acted as though it was no big deal to tell me I had MS, gave me information on four disease-modifying medications to review to decide which one to take, suggested I sign up for Bike MS, and gave me [a] book," she remembers. "I was dumbfounded."

Today her fatigue is near-constant. "I diligently monitor my energy level, and I take it seriously when it dips to the point of feeling like regular living is like trying to walk through water."

Her new attitude isn't to "fight" or "battle" the disease. "That [language] never resonated with me," says Prada, who also blogs for the MSAA. "Constantly fighting seemed exhausting to me when I was already experiencing extreme fatigue. Thinking of my body as a buddy that is doing the best she can made me feel like I had some control. It made me feel like I could help my body continue to do as much as possible for as long as possible."

Feeling Connected and Nurtured When I’m Alone on Christmas

Families seem to be expanding and shrinking simultaneously these days. With second and third marriages, births, in-laws and kids by marriage, the number of people I care about and am related to keeps growing. At the same time, divorce, death, living miles away and conflicting schedules reduce the number of people I spend time with in-person during the holidays.

This year I vacationed over Thanksgiving week, and I enjoyed a lot of time with family and friends while having a lot of fun. Now I’m back at home and while I’ll have plenty of parties to attend this month, I anticipate spending Christmas Day alone. Living far away from my closest family members makes it impossible for me to spend all holidays with them. I enjoy spending time with others, and I enjoy my time alone. Still, there’s something about the holidays that is tricky. If I don’t plan ahead, it can be easy to fall prey to self-pity.

In my life, I’ve experienced a couple decades of small family gatherings and another couple decades of large and wonderfully chaotic extended family holiday events. More recently I’ve experienced celebrating holidays solo, and it’s coerced me to think hard about what will allow me to enjoy the day alone. For me, I feel nurtured if I can include some time connecting with people important to me, some time outside reflecting and appreciating all of the good things in my life, and some time indulging with good food and drink.

If I’m going to be alone on a meaningful day, I try to connect with others in one or more of the following ways:

1. Try to set up a time to Facetime or phone people important to you. If schedules are complicated, email or text a holiday greeting.
2. Do things to connect with people throughout the month or year, not just on or near the holiday itself.
3. See if friends will invite you to join them. You can be somewhat subtle by asking what they’re doing. They’ll ask what you’re doing and often invite you to join them, but make sure before asking that it’s someone with whom you would like to spend the day.
4. Ask a neighbor if they’ll be around. You can get together for an hour for coffee, tea or wine. It doesn’t need to be big, just something to break up the day and include some interpersonal connection.
5. Volunteer at a local charity. You can help prepare or serve a meal for others. You can also just be a smiling greeter if you’re not able or up to performing tasks. Listen, share, learn and connect.
6. Tell people that you’ll be alone and would appreciate a phone call. Often people assume I have it all together and will be busy. They’re happy to connect when they know it’ll be appreciated and not a bother.
7. I’ve never found a relationship that does better from no interaction. Give people a chance, and don’t assume the worst. Appropriately credit responsibility for behavior to the person doing it. Feel good about yourself. Make sure you feel good about your behavior regardless of the actions of others.
8. Consider people you know that may also be spending the day alone. Make plans to do something together for a portion of the day.
9. Post something to Facebook. One Thanksgiving I enjoyed watching the sunrise on the beach while drinking coffee.  I took a video of the sunrise and shared it with friends while expressing my gratitude for them in my life.

Some of the ways I’ll nurture myself include the following:

1. Do something special for yourself to commemorate the occasion. Do something indulgent for you, or engage in some activity you love. Sit on the beach, go for a walk, or stop at a coffee shop that’s open. What you love may be totally different than anything I would ever consider.
2. Find a restaurant nearby that’s open, and go alone if you want.  At the very least you’ll talk to people that have to work instead of spending time with their own family.  It’s usually a very friendly time.  Plan ahead since a lot of places are closed on holidays.
3. Visit and leave flowers at someone’s final resting place. Honor the impact that person had on your life.
4. Make and enjoy a meal you love if you enjoy cooking.
5. Decorate, even if it’s just a holiday themed bouquet or plant. Differentiate the day and your surroundings from every other season or day of the year.
6. Get outside. Even a rainy, cloudy day outside can feel better than staying inside or under cover.
7. Think about what you could do so that you’ll feel loved and appreciated even if it’s just you who loves you.
8. Make sure you find a way to enjoy the time instead of just trying to get through it. 

Connecting with people important to me takes some initiative. Lots of them have a busy day ahead, so it’s good to plan in advance to make sure my emotional needs met. Overall, I’ll be happy if I remember to genuinely look at the bright side, do something I love, connect with everyone I care about either during the month or on the day, and find a way to be generous.  And if nothing else works, I’ll distract myself and remember tomorrow is another day.

A Nurse's Kindness

The compassion and kindness a nurse showed me long ago still brings tears to my eyes. I think she saw me as she saw her two teenage daughters, and she mothered me at a time when I was completely alone.

One day before my 17^th birthday, just before 6:00 am, my three sisters, mother and I were in a head-on highway collision on I-90 passing through Butte, Montana. I awoke in the wreckage in a daze. I recall my family through a haze after impact and before the ambulance arrived. In my next memory flash I’m in the ambulance holding my three-year-old sister. I rocked her in my lap as she cried, and we held the baby quilt our mom made for her up to her face. The quilt was quickly saturated in blood from her severed chin.  My sweet little sister stopped crying long enough to ask me to stop rocking her. Later I learned she not only had a gashed chin and lost teeth, she had a broken jaw and severely broken leg. Rocking her hurt her, and it broke me to see how trying to comfort her and myself caused her more pain. She sat in my lap in the ambulance, and I remember hearing people shouting and the mechanical grinding of the rescuers using the jaws of life on the car to extricate my eldest sister. 

At the mercifully nearby emergency trauma center, I lie on a gurney in the emergency room while I hear urgent care professionals ask my mother questions on the adjacent stretcher. She’s confused and concerned for her daughters.

My three sisters and mother were admitted to the hospital and taken to the Intensive Care Unit while I was not. At the hospital, they took some x-rays of my head and ribs, gave me a few stitches on my cheek and released me. At that time, I used my mom’s phone calling card and her beat up blue address book to call people and tell them we’d been in a bad car accident. Over the next few hours I practically learned what I remember as a 16-digit calling card number by heart. I used the pay phone to dial anyone that I thought needed to know or could help. I called my father first, then my grandfather, and then the rest of our family and friends. Once I’d perfected the script, I was done and returned to the waiting room.

The head nurse at the hospital took charge and told me I needed to get some rest. She offered to take me to her nearby home. This nurse put her two daughters in charge of tending to me and went back to the hospital. Her daughters gave me lunch, clothes to wear and a bed to nap while they washed my clothes. I slept a few hours and woke feeling embarrassed by my vulnerability.  Their absolute kindness was humbling and unnerving. Thankfully I went along with it and accepted their generosity. I don’t recall if I thanked them, but I’m positive that I didn’t thank them sufficiently considering how grateful I was for their kindness.

By evening my father had flown in and gotten a hotel room for us to stay while our four family members stayed in ICU for a week. I spent much of the next few days talking to law enforcement describing what I remembered and moving from room to room to sit with my sisters and mother.  None of them were responsive to my presence for a while. They only communicated when they were in pain or were resisting care. Within the week I went to the scrap yard where our car had been towed, and I cleaned out our personal belongings. We’d been on a road trip, and we had lots of loose items in the car. What surprised me beyond the severe wreckage was that our shoes were strewn about the vehicle. The impact of the collision had removed our lace-tied sneakers from our feet.

The morning after the accident I remember waking to a large bouquet of flowers next to my bed. My father asked what the flowers were for, and as I read the card I said, “They’re for my birthday.”

The hospital head nurse, this woman whose name I still don’t know, tended to me when I was all alone, and she made sure my birthday wasn’t forgotten.  That was the only mention of my birthday that year, and it was gift from a complete stranger.

I know nurses regularly care for people in their line of work, and I’m extremely grateful that people are willing to work in trauma centers where they see tragedy daily. What still touches my heart are the gifts nurses give beyond the line of duty. On my 17^th birthday, the hospital head nurse went above and beyond her job description to show me kindness on one of the worst days of my life. I’m forever indebted to her humanity.

**Check out Happy It's Not Worse. Seriously and Sincerely for more on how this accident helped shape my perspective.

Blog Post #50, Reflecting On My Writing Journey

I started journaling a little over three years after I was diagnosed with Multiple Sclerosis, and another two years passed before I created this blog, 'Keep Doing What You're Doing.' This post marks the 50th blog post I've published in almost three and a half years of sharing my thoughts for anyone who wants to read them. 

It's remarkable to me that I now enjoy writing so much. I never thought of myself as a writer. In junior high I learned of a study that said kids either do well in math and science or in history and writing. I knew I was good in math and science and figured I must not be a very good writer. Not such a smart conclusion, but so it was.

The first page of my first journal perfectly shows how nervous I was about delving into my thoughts and putting them on paper. It also includes my inspiration for doing it anyway. 

"Live in alignment with the way things are." "Know your story. Write it down. Acknowledge what has brought you to this place. Celebrate it, share it with others."

~The Way of the Happy Woman

"This page intimidates me. The first page of a clean bound book seems like it's too important to waste with selfish, non-insightful, non-clever scribbling that would embarrass me if someone else read it. So... to the un-named, no-faced person reading this, go away. :)"

From the first page of my first journal.
"Live in alignment with the way things are."
"Know your story. Write it down. Acknowledge
what has brought you to this place.
Celebrate it, share it with others."
~The Way of the Happy Woman

Early in this first journal, I wrote, "I can see writing isn't my passion. Almost wrote 'is.'  How Freudian is that? Anyway, I'm not going to force a daily journaling routine. Instead I'll do it as needed."  In that section, the "n't" is crammed in after "is". 

It amazes me how since then writing has become a huge part of my life and something I look forward to doing. The name of my blog references what my doctors would always say when I saw them, "Keep doing what you're doing." I'm tickled to see that I've been able to create what I set out to do: track, compile and share what helps me live with MS, and use it as a reference guide for my own health. In essence, figure out what I'm doing and keep doing it.

I figure I spend a lot of time learning about myself, Multiple Sclerosis, and how to live well, and I may as well share it with others. I'm a firm believer that we learn lessons when we're ready, and if something I write can help someone short-cut the lesson learning process I'm happy to help. As a good friend of mine says, "if you help one person, it's worth it." 

Reflecting on the past few years, it's been worthwhile to see my blogs featured in Multiple Sclerosis Association of America MS Conversations and newsletter, Carnival of MS Bloggers, and Phoenix Helix Paleo AIP Recipe Roundtable. The local newspaper interviewed me, and so did Health.com. Mostly though, it's been rewarding talking to people one-on-one who said they appreciated something I wrote.

Over time, I've developed a template to help keep me focused on what I write in my posts. Not all of my posts include everything in the template, but I try to consider all of the points before hitting, "Publish." 

Keep Doing What You’re Doing, Blog Template

1.     Describe the lesson or approach.
2.     What happened to inspire me? What Am I doing, what’s the benefit?
3.     What was the challenge?
4.     What did I learn? How is this different than before I learned this lesson?
5.     How do I apply the lesson?
6.     What’s hard or irritating about the lesson? How can I make it easier?
7.     What does this have to do with MS?
8.     How will I use this in the future? What success have I had with this?  Photos?
9.     Is this self serving or would someone who doesn’t know me care about this? Would I care to read this if a stranger wrote it?
10.  Is there a funny story to tell?
11.  Can I show compassion for myself and others?

If there's something you'd like me to add to my list, please let me know!