MS Isn't A Battle To Me, It's Living

It’s interesting to me to see how often people describe people with chronic illnesses as struggling and battling the disease. They may be, but sometimes I think it's an assumption.  It’s not how I approach it. MS is like a family member or friend, my body buddy, that challenges me but isn’t fighting me. My approach is to coax the best out of myself and do what I can to keep the disease in check.  I’m not winning or losing, I’m living with it.

“When we resist change, it’s called suffering. But when we can completely let go and not struggle against it, when we can embrace the groundlessness of our situation and relax into its dynamic quality, that’s called enlightenment, or awakening to our true nature, to our fundamental goodness.”

- Pema Chödrön, "The Fundamental Ambiguity of Being Human"

I’m not suffering. I’m living and enjoying life. I experience health issues that affect my energy and mobility among other things. Sometimes it’s a challenge, and that’s just the nature of life.  We have tools in our life toolbox to deal with people, situations, and the body's aging process. Sometimes the tool I usually use doesn’t work in a new situation.  The challenge is then to learn a new tool, change my situation, or look at it differently to make peace with reality.

Choices I make have consequences in every aspect of my life.  Other people my age may be able to push themselves harder or longer, but learning to pause helps me get more out of life and experience fewer consequences that could lead to disease progression. I'm pushing and accepting limits to improve my quality of life. I expect to keep experiencing new symptoms and challenges, and my approach is to keep doing what I'm doing.

Here's to embracing the groundlessness of our situations, relaxing into them, and thriving!

Finding What I Seek

I like using the natural tendencies of my mind to shape how I experience life.  Lately I’ve been toying with the idea of intentionally planting metaphorical seeds in my mind for things that I could use in my life right now.

Consciously thinking of something can trigger our minds to later notice it more frequently.  It may not be more prevalent, it’s just that we’ll notice it as a pattern.  I learned about this Baader-Meinhof Phenomenon last year, and sure enough I saw it mentioned in two other places within 24 hours.

A woman doing her daily shopping at the boulangerie

Synchronicity, serendipity, happenstance. I love all these words and meanings, and I’m delighted when I experience them.  Whether it’s a cosmic coincidence or just the natural tendency of our brains doesn’t matter to me.   Once we learn something, we may start finding it everywhere. And once it’s in the brain, it can shape our experiences and attitudes dramatically.

Shaping my experience: My assignments for France

Earlier this year I asked two dear friends what type of souvenir they would like me to bring them from France. I expected them to say scarves or some other object. I was surprised when they asked for things that required no expenditure, and I hadn’t anticipated how much richer my travels would be for the requests. One asked for photographs of strong women. Another asked for photographs of a certain popular graffiti artist. Both assignments shaped how I viewed and experienced my surroundings during my trip, and I noticed details that made my visit all the more unique and delightful.

Three Women at the Centre Pompidou Museum

I didn’t get photographs of all the strong women I saw because I was either too embarrassed to ask or couldn’t pull out my camera in time to get the shot. But those moments still linger in my memory of the trip.  The woman in a fabulous skirted ensemble riding her bike through the bustling streets of Paris. She passed cars in gridlock with ease and a fluidity exuding confidence and beauty.  The three aged women in the Centre Pompidou museum enjoying a leisurely conversation and laughter filled evening out together. I only took a photograph of them from behind because I was too embarrassed to ask to take their photograph. Their wide smiles on lined and joy filled faces are missing from the photographs, but I still light up at the memory of them. Just as I perceived them, I’m looking forward to being an old woman enjoying life and making time for my relationships, art, and the evening breeze.  Now I realize how special it could have been to connect with them and expand the experience. It might not have been an interruption to them, rather an opportunity to make the evening even more special and memorable for all of us.

Graffiti in the alley outside our apartment on Rue Mouffetard

The graffiti of the artist my friend mentioned is typically small and hidden.  Like finding a gem in a lawn, it pushed me to look at my surroundings in detail. We looked at cracks in building foundations, and we studied unfamiliar road signs wondering if they were standard or artistically modified. I’m not sure if I found any of his artwork, but we found many beautiful, clever, and vibrant paintings everywhere. We looked, and we found.

The Do Not Enter signs are usually just a red circle
with a horizontal white line.
We found clever modified signs throughout Paris.

The residual effect of these travel assignments is that I continue to seek and find everyday beauty in graffiti and strong women.  I delight in the beauty of street art and human creativity. I’m inspired and empowered by the interesting women all around me.

Not always finding exactly what I seek, but loving what I find

Naturally, I don’t look for things I don’t think I’ll find. I like the idea of putting something in my scope of attention and believing the universe will provide.  Setting aside the judgment of whether I’m likely to find it or not, only focusing on my interest in seeing it.

I find coins on the ground a lot. I’ve found a lot over the years, and I continue to look even though I don’t think about it much. I didn’t see any change on the ground in France in almost three weeks. It made me curious if they have a different relationship to change than Americans where they don’t accidentally drop it as often as we do. Or perhaps the custom of leaving spare change for servers after meals doesn’t facilitate carrying as much change around. Do French men put change in their pockets or in a zippered wallet? Or does the fact that they have coins worth a dollar or more increase their carefulness with their money? This is one case of not finding what I looked for. It wasn’t something I need, and it prompted a curiosity in my thoughts and discussion with my sister about the possible reasons why the difference. I didn’t find what I originally sought; I found something that satisfied my search in an even more interesting and fulfilling way.

Intentional seeking

As I look at my vision boards from a couple years ago, it amazes me how many of the things pictured I’ve learned to do, have done, or have in my life now! These experiences urge me to be more proactive about how I view my day. I’m tired, maybe I’ll think about looking for energy around me. If I’m feeling low, I can think about seeking joy and beauty. It'll be interesting to see how it works!

Music Is My Happy Place

For #GivingTuesday today I donated to MusicandMemory.org.  Music is my happy place through challenging times, and I hope my small donation will help someone else experience their happy place again.

In early 2013, I watched the movie, “The Music Never Stopped,” with fascination about a man with a brain tumor that affects his memory. Through listening to the music of his youth, he’s able to remember and connect with his family. Beyond the story and fabulous characters, it's also a toe tapping flick with tons of Greatful Dead songs.  After savoring the movie I scrutinized the credits to learn the movie was based on Oliver Sacks’ story, "The Last Hippie."  Searching for other books by Oliver Sacks, I found and read Musicophilia: Tales of Music and the Brain. This book is thought-provoking for the anecdotes and studies showing just how powerful, quirky, and surprising our brains and abilities can be with our relationship to music.

                                                                                                                      
This past weekend I streamed Alive Inside on Netflix and was moved to tears again by the power of music on people’s lives. The documentary focuses on how the simple gift of an iPod with a playlist of music that’s meaningful to a person with dementia can transform their quality of life and allow them to connect with people around them.

In the United States we have 5 million people living with dementia and 10 million people caring for them. MusicandMemory.org is an organization that helps bring music to people living with dementia in nursing homes. May we all enjoy our own personal musical playlist for the full extent of our time on earth.

Getting The Most Out Of My Neurologist Visits

Data, data, data  With Multiple Sclerosis, the data I can track to see how I’m doing pretty much boils down to how I feel, what symptoms I experience, and what my MRI scans show. This requires ongoing tracking on my part to monitor my health and get the most out of my doctor visits.

The Neurologist Exam When I go to my neurologist and don’t have a new MRI scan done, the visit mostly consists of me telling the doctor how I’m doing.  Then he'll give what I laughingly think of as an expensive, doctor conducted sobriety test. He'll watch my eyes as they track his finger moving around, he'll watch me touch my finger to his finger and to my nose, back and forth. He'll check my walking gait, speed and balance skills by watching me walk in the hallway.  Forward away from him 20 feet quickly, turn around and walk toward him. Walk on my heels, on my toes, and along a line on the floor heel to toe.

For the exam he'll also poke and scratch me with a small stick to see what I can feel and whether it's a sharp or dull sensation. He'll check my reflexes, flexibility and strength in each limb.We’ll discuss any symptoms I’m having, and he can let me know which medications are on the market that may help alleviate symptoms.

MRI Scans I've learned from my neurologist that MRIs show lesions, and the MRI scans taken with a contrast will show active lesions as a brighter white. Over the course of years of scans, the neurologist will have a lot of scans that he can toggle between to compare lesions from years past and your most recent scan. He'll show you the technician's report and describe his own conclusions from looking at the information. Ask lots of questions if something doesn't make sense. Repeat what you think you understand from what he's said so that he can agree or correct you if you misunderstood.

Some people choose not to get the contrast, and it's a matter of personal preference.  It's important to know though that without the contrast you will not be able to tell if lesions are old or active.

My neurologist says that he's more interested in brain scans than the spine because they help indicate disease progression where symptoms aren't as readily felt or visible. I like to get scans of my spinal cord to show any activity. This information helps me compare how I’m feeling today and any symptoms since my last scan with proof of disease progression.   In the past I've had pretty normal looking brain scans and a spinal cord riddled with lesions.  I understand my doctor's perspective, but given fatigue is my biggest challenge and it’s such a vague symptom, the MRI scans give me feedback that helps me decide what symptoms were likely the result of having an exacerbation (aka flare up as a result of new damage) or just the consequences of old lesions.

MRI scans have been my best source of feedback to start trusting myself again with how I think I'm doing. They've also helped me relax more when I experience new symptoms since I've learned a sense of what is health issues as usual or something that needs immediate attention.

Prepare a list of my symptoms and questions to ask my neurologist.  I keep a health journal that came with my disease modifying drug.  It’s primarily provided in order to track my injection rotations and consistency.  I use it to track my sleep, exercise, weight, and any unusual symptoms.  I also enter alcohol consumption and certain foods that I think can contribute to me not feeling great.

It’s easy to get flustered or forget something I’d like to discuss at the doctor’s visit since time is limited and some discussion may derail my train of thought.  I make sure I have any questions I want to ask written down so I can make the most of my appointment.

I check my notes from my last visit and see what symptoms were discussed and what recommendations were made.  In my appointment I take lots of notes.  I've had a couple of providers in the past that seemed surprised or uneasy with my note taking, but once they got to know me they've all complimented me on my approach to my health.

Consult my support team and invite someone along. I let my inner circle know that I’m going to my semi-annual neurologist appointment so that they can be on standby in case I need to talk following the visit.  At times I will also seek their input prior to the appointment to see if they've noticed any symptoms or have any insight into how I’m doing. Their observations are always helpful and sometimes surprising!

I like to bring someone with me to my appointment so that I have someone to talk to afterwards that may have heard things differently or can reinforce what I heard.  Even taking notes, it’s a lot of information to absorb and it’s helpful to have someone else that heard the same conversation.  Especially if my friend concluded something different than I did, I can pursue it.

Having friends and family accompany me to my appointment is also a tremendous opportunity for bolstering my support system.  My hope is that it will help demystify my disease and how I’m doing.

After taking a good friend with me to an appointment she gave me feedback that she was surprised that I was so timid in the exam room.  She knows me as a person who takes care of myself and strongly advocates for my needs.  With some self-reflection I knew she was correct and my timid nature was in response to not wanting to be labeled a problem or difficult patient. This feedback helped me put my fears in perspective and encourage myself to think of self advocacy as just that, not being difficult or troublesome.

Reward yourself after the appointment.  Plan for and allow time after the appointment to nurture and reward yourself for being responsible and proactive about your health. I remember as a kid getting ice cream after going to the dentist and behaving well.  I think we never grow out of needing positive reinforcement. Self care takes a lot of effort and may not always be enough of its own reward.

My preparation list below is specific for a neurologist visit, but is good for annual checkups and other doctor visits too.

1. Write down a detailed list of any questions you have for the neurologist. Bring a journal to write down notes during the appointment. Repeat back to the doctor what you understand was said to confirm or correct your impressions.
2. Bring a list of all medications and supplements you take consistently and once in a while. Make sure to bring insurance card and pharmacy contact information.
3. Dress comfortably, and wear shoes you wear frequently.  When the neurologist checks your gait, you want to make sure he’s seeing you in your regular shoes.  He may also look at your shoes to see if wear is uneven.
4. Be prepared to say what symptoms you're experiencing, how long they last and whether they've increased or decreased.  Describe any concerns you have. Think about any possible explanations other than MS for these symptoms.
5. Know and be able to describe how you're doing with stress, exercise, and diet. Have there been any changes in your life?  
6. Bring a friend or family member who can help absorb information, be supportive and get an accurate understanding of how you're doing. Make sure you let this person know what you expect from them and how they can help.
7. Bring your personal calendar to help schedule the next neurologist appointment in six months.
8. Plan to do something after the appointment that is fun and personally nurturing. 

My Life List

When I was 22 and hanging out in the hot tub with a group of people, my mom described a Dear Abby or Dear Ann Landers question that she’d read. The question was, “What have you always wanted to do and are now too old to do?” My mom asked her friends at work what fell into that category for them, and skydiving was one of the responses. It kicked off a conversation among us about what experiences we would like to have before we get too old to do them. When my mom asked if I would ever sky dive I immediately responded, “In a heartbeat!” Being the amazing person my mom was, soon after she gave me a static-line parachute lesson as an early birthday present. That parachute jump was a scary, thrilling and amazing experience. Over twenty years later, I still grin thinking about how much fun I had and how jumping from an airplane made me feel like I could do anything.

Building a Life List, Prioritizing and Completing Goals
Do you have a bucket list?  I loved the movie, and I think it’s a good idea for me to think about what I would like to accomplish before I kick the bucket. The one aspect of a bucket list that bugged me was the half glass empty feeling it gives me.  It occurred to me to build a Life List that includes things I've already done.  Yes, it’s exactly like writing something down on my To Do list so that I can cross it off. But I do that too, and it doesn't bother me a bit.  I added parachute jump to my Life List and said, “Yep! Done that and glad I did!”

And the more I think about it, the more I think we need to give ourselves credit for what we've already done. This exercise helped me appreciate and put into perspective all that I've already done, the things I haven’t yet done, and the things I may never do. Plus it helps me prioritize my list differently given the experiences I've loved and would like to do again, those I’d like to build on, or those that are completely new.

It’s not all happy: I add unhappy life events to my Life List since they are experiences that helped shape me.  Please note I am not proactive about adding these! This isn't to celebrate them, it’s to appreciate how hard they were and that I made it through.  When I was 23 my mother died unexpectedly, and I experienced the most profound loss of my life to this day. She named me executrix, meaning I had to quickly make funeral arrangements and figure out how to wrap up a full life cut short. Burying your parents is a natural and necessary event for most people. Luckily most people get to have that experience at an older age, and they don’t all have to deal with the financial and legal issues surrounding death. I learned a lot, and I have a huge amount of empathy for others experiencing this life event at any age.

Building on experiences: I would love to travel more and feel I haven’t much in my adult life. I had an internal belief that I haven’t traveled since I haven’t gone overseas. Once I created my Life List, I realized that belief isn't really accurate given my family moved a lot when I was young.  I've lived in Illinois twice, Maryland, Massachusetts, Ontario, Colorado and Washington. My mom made sure we experienced as many museums, historic sites and cities as we could in each state. It wasn't traveling, it was better since it was tourism and immersion in each region’s culture. It’s fun to watch movies, recognize places, and to know, “I've been there!”

Living in the Pacific Northwest, I've spent some weekends in British Columbia and broke in my passport in a short trip to Victoria.  There are a lot of places in the US I’d still like to see or experience as an adult, but looking at my Life List encourages me to focus on traveling abroad sooner than later.

Step by step: Some of the things on my list require a lot of steps to get to the point where I could possibly achieve them.  Writing these goals down helps me identify the steps, see if I’m willing to undertake them, and decide if I want to keep them on my Life List.  I also like patting myself on the back for the steps I've already accomplished that will help me get there.

New Inspiration: Groupon and Living Social are a fun source of ideas for a bucket list experience. I hadn't thought about doing trapeze until I saw a Groupon for a lesson. Bam! Then I really wanted to do it and sought out friends to do this with me.  We had fun, and I added going back and advancing my trapeze skills over ten more sessions to my Life List.  So far I've gone six times and loved it each time. Check out my post on trapeze.

Purging the list: I always thought I would run a marathon some day.  It’s athletic, it’s not an easy thing to do, and it takes a lot of preparation and dedication to complete. Hats off to all of the people that have done it! I used to jog for exercise and I ran a local 12K for six years.  At my peak I finished in just over an hour. The next year I trained hard and hoped to finish in under an hour. A week prior to the race my body started doing wonky things. I pushed myself hard to run while experiencing a lot of fatigue and a body numb from the bra-line down. I was disappointed with my race time at five minutes longer that the previous year. This eventually led to my Multiple Sclerosis diagnosis, and now I’m pretty proud of myself for doing so well given my body limitations. Over the years, I kept trying to run and would get frustrated each time I injured myself due to a slightly uneven gait or experienced an MS exacerbation from pushing myself too hard.

This experience pushed me to rethink my goals and let running a marathon go. And I have no regret or disappointment for not having done it. With so many other goals I want to experience, I will never run out of things to fill the list.

Going through phases: I like trying new things, focusing on learning them well over a period of time, and then moving on to a new project. I don’t think of this approach as giving up or having not liked them enough. I just get what I needed or wanted at the time from the experience, and I then can use my free time for learning something new. On to the next Life List goal…

I Feel Like A Rock Star!

“You’re stable and in remission.” Seriously? A huge grin spread across my face when my doctor read the technician’s report and reviewed the new full set of MRI scans with me. This good news made me absolutely giddy! My neurologist’s assessment exceeded even the most optimistic of my expectations going in to my appointment! I anticipated the scans might reveal a few new small lesions and possibly an active lesion now that might be the cause of my ongoing and currently increased fatigue. At no time did I anticipate that all of the lesions showing on my new set of MRIs would be accounted for in scans done two or more years ago.

It’s been a few days, and I’m still giddy. MRI scans give me much needed feedback that over the last six years has helped me learn to discern whether a new symptom is just old damage flaring up or a new relapse.  I hadn't thought I was having a relapse, but I think I was too nervous to even hope for the news I received. Absolutely NO new lesions in the last two years?  My neurologist told me that with the disease modifying drugs he counts them as successful if relapses occur once per year.  Six years ago, I was experiencing three relapses per year.  Now I feel like a rock star!

The results of my scans validated my dedication to improving and maintaining my health given old lesions cause me difficulty. Mostly I experience fatigue that makes working full time and living a normal life tough.  Numbness, pain and intermittent loss of function are normal yet fortunately still invisible to others.  Please don’t take this as complaining.  I know I have it a LOT easier than many of my friends with MS.  And easier than a lot of people without MS for that matter! I’m fortunate that in spite of lesions in my spinal cord that my neurologist would expect to cause much greater loss of function and symptoms, I can still be active and experience a pretty athletic lifestyle.

I credit a lot of this to learning to listen to and adapt for what my body needs. Unfortunately I have not found a short cut for this.  It just takes time, patience, research and dedication.The short list of practical living tips (in no particular order) I consistently follow are:

1. Eat healthy foods my body appreciates. It’s going to be different for each person, but currently I eat a blender full of fruits and vegetables spread out over each day to boost my nutrient intake and smooth my digestion outtake. Sticking to protein, fruits and vegetables and avoiding grains 90% of the time is working for me.
2. Exercise moderately a minimum of three times per week. More if I have the energy.  Mix it up given the time of year and weather conditions. Do yoga at least once a week.
3. Rest as needed. Prioritize activities and only do the top of the list based on mandatory items and those that will support me the most. See my Learning to Pause post.
4. Take supplements to help with my individual symptoms and for general health.
5. Consistently take my disease modifying drug.
6. Lean on my friends and family. These relationships aren't one-sided, but they mean everything to me. These people help cheer me up, give me reality checks and are supportive of me no matter what.  I’m lucky to have them.
7. Contribute to society each day. It can be through work, volunteering or just brightening someone's day.

The best part of my recent “stable and in remission” diagnosis is feeling that I don’t have to be perfect to have good health. My fear of experiencing disease progression and some day feeling I hadn't done enough to prevent it has subsided for now. What I’m doing is enough to not trigger my disease.  What a relief!

Convenience Food: Kalamata Olive and Turkey Meat Pucks

Eating food that hasn't been pre-made or packaged requires a lot more time in the kitchen.  When you need to eliminate certain foods from your diet, it’s a must to make your own from scratch.  I've eaten foods where the ingredient list should result in a food safe for me to eat.  I’m not sure if it’s the processing or trace amounts of something not included on the wrapper, but I know something is off when my throat gets sore or my head gets congested. Regardless, the only way to be sure what’s in your food is to make it yourself from fresh ingredients.

These meat pucks are terrific for cutting up and adding to salads or whole as grab and go meals.  I’ll eat them for breakfast with a green smoothie or as a snack with some cut up raw vegetables.  They’re great convenience food for traveling.  I can freeze them and put them in a cooler for overnight trips.  It’s nice to not have to completely rely on restaurants or grocery stores to get my basic food needs met.  At approximately 2 ounces each, they provide half the protein I like to eat in a meal. They help me maintain my self-control with food choices and avoid emergency occurrences where I’ll eat anything I can find!

You may modify the meat mixture to your heart’s content. Making and freezing a couple variations of these meat pucks allows you to vary your meals throughout the week without extensive cooking time. Substitute other ground meats for the turkey with beef, pork, lamb, or chicken. This is also a good recipe for including organ meats if you’re trying to up your intake of offal. I've also added shredded carrot, sweet potato, kale, and spinach to the meat mixture prior to baking with great results. Just make sure the vegetables are cut small enough to cook completely  with the pucks. Adjust the seasonings depending on what you prefer and have on hand.  If you omit the olives, make sure to add a teaspoon of salt to the mixture before baking. Be creative!

If there are two or more people in your household, make sure to make a lot of meat pucks.  These disappear quickly!

Kalamata Olive & Turkey Meat Pucks

Kalamata Olive and Turkey Meat Pucks
Equipment:
Chef’s knife, cutting board
2 Muffin tins to make 24 pucks
KitchenAid Stand Mixer with paddle attachments, or a large bowl and your hands
Standard ice cream scoop with a spring to release the food
Cooling racks preferred but not necessary

Ingredients:
3.25 lbs Ground Turkey
3 Tbsp Solid Cooking Oil (lard, coconut oil or palm oil is preferred for high heat)
1/2 Onion, (5 oz) diced
30 Kalamata or Green Olives, pitted and chopped small.  Check the ingredient list on olives.  You want to make sure there isn’t something in them that you don’t want to eat.  The kalamata olives I found have red wine vinegar in them.  I did find some green olives with only olives, water, salt and lactic acid.
6 Cloves Garlic, minced (approx 2 Tbsp)
12 stalks Thyme, ¼ oz fresh stripped off stalks and minced, or 1 Tablespoon dried thyme
6 stalks Fresh Sage, 1/3 oz, leaves stripped from stalk and minced, or one teaspoon dried ground sage

Directions:
1. Preheat the oven to 350 degrees Fahrenheit.
2. Prepare all the ingredients by cleaning and chopping them.  Place everything into the stand mixer and mix for 30 seconds to a minute until blended through.  Alternately you may just mix it all with your hands in a large bowl.  It’ll be cold and will take longer, so I prefer to use a mixer.
2. Grease the muffin tins with coconut oil or palm oil.  Turkey is low in fat, and you don’t want the pucks to stick to the pans.
3. Using the ice cream scoop, scoop the turkey mixture and press it against the bowl to fill the scoop. Release one scoop of meat into each muffin tin.  Once all 24 are filled, you may have a little extra meat mixture. Either evening add a little mixture to each muffin tin or refrigerate the remains for use in another meal.  I had 3.5 oz left over and refrigerated it to scramble with veggies tomorrow.
4. Flatten the top in each muffin tin to make each puck.
5. Place both muffin tins into the oven, close door and cook for 30 minutes.  Make sure to set the timer so you can track how long they've been cooking. (This note is for me since I could easily forget I have something baking or what time I put it in…)
6. After 30 minutes pull the muffin tins from the oven and turn off the oven.  Remove the meat pucks from the pans and place them on a cooling rack.  Eat them or once cooled put them in a lidded glass container for storing in the refrigerator.  You may also freeze them for future eating.  Enjoy!

Fresh, fresh, fresh!

Only a chef's knife and cutting board are needed for prepping all the ingredients, but you may use dried herbs and a garlic press if you prefer less preparation time.

Done and ready for eating, refrigerating or freezing