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! 

Being The Other Mother

When I was a child I said I would have three kids. I simply assumed I would marry and give birth to three kids. Life choices led me differently.  I never experienced pregnancy, and I never gave birth to a child. Yet I have a son. I’m the Other Mother. Not only did I choose that role, it’s important to acknowledge that I was gifted that role and title.

As a young woman I married a divorced man with a son. I didn’t know any stepmothers well. I knew I wanted to be different than the stereotypical step monster. I knew I wanted to be good to this little boy, and at the very minimum I didn’t want to be cause for this child to need therapy. 

I think feeling like a bit of an outsider in the team of parents made me try harder. He wasn’t genetically mine, and I only saw him every other weekend and holidays. When big decisions needed to made, I was one of four people to decide. I offered my opinion to my husband, and ultimately believed the decision should rest with my son’s mother and stepfather. They were raising my son and living with him daily. They experienced all the day to day hardships while I was a weekend parent.

Before my marriage, I was impressed that the man I wanted to marry said he had made an agreement with his ex-wife to never allow the relationship between them to harm their son. This man assumed some responsibility for the ending of his marriage, and he didn’t speak poorly of his son’s mother. It helped me view his son’s mother as just that, his son’s mother and not my husband’s ex-wife.

The first time my son visited for the weekend, I was touched beyond words that my new son’s real mother would let me take care of him. I felt the gravity of a woman entrusting this little boy slightly less than six years old in my care solely because his father had married me. That simple act made her in my mind a remarkable woman who deserves every bit of respect and kindness I can provide. 

When she sent her son to visit for the weekend, he would have a duffle bag with clean clothes. While he was with us for the weekend, I would wash his dirty clothes and send him home with a duffle bag of clean clothes.  I wanted to care for him and not take advantage of the parenting arrangement where I didn’t share custody. Sure, I wanted her to like me, but I also wanted her to know that I didn’t take her role for granted. At some point, she told me I didn’t need to clean his clothes. To me, that is how it should be. As the other mother my goal was to be the best parent I could be given the circumstances. 

I didn’t create the title of Other Mother for myself. It was my son’s mother that told me in their home they didn’t call parents stepfathers or stepmothers. She said she called me the Other Mother, and that was touching to me. We four parents were consistent in saying my son had four parents. He had two mothers and two fathers. It was a gift these adults gave me to have time with this little boy and be granted the role of a mother. When my son married, I held back in the wedding arrangements feeling like I should be grateful for any role they would allow me to play. It was beyond heartwarming that my son’s real mother would take extra care to make sure that I was recognized and respected at the wedding as a mother. Unlike other guests escorted to their seats by ushers, my son’s mother made sure my son would escort me to my seat before he did so with his mother. She made sure I didn't get lost in the ceremony.

I only regret that during my marriage I felt a responsibility to put my husband and son’s relationship before mine with my son. I felt obligated to try to push them together, and sometimes I may have appeared to hold back.  If I could go back I would put my relationship with my son as equal and not subservient. 

When I told my son that his father and I were divorcing, my son – yes, I will always claim him as my son – said the most loving thing I could have heard in that moment. He said, “This doesn’t change anything with us.” My heart is full for that.  

Make Life Easier To Get More Done And Lessen Stress

Examples of notecards I use frequently

Everyone I know feels overwhelmed at times.  They forget things, and they accomplish less than they’d like sometimes. I’m comforted when I have an organized life and am not worried that I’m forgetting something. I like to create systems that support me in being organized, simplify my life, and make life easier so that I can exert energy on the good stuff.

To reduce my stress level, frequently I put effort into reducing the number of decisions I need to make and the quantity of things I need to remember. If I don’t have a method for remembering it, I’ll get in a thought loop reminding myself to do it later. After a while, it can be crazy making. It’s wasted energy that could be put to better use. 

Streamlining things I do repeatedly makes them easier, less stressful, and more likely to get done. Making decisions takes energy. The more decisions I make in a day, the more energy it takes to get through the day. Decision fatigue is real, and when MS fatigue already affects a person’s health it can really lower their quality of life. Given I want to be productive and maximize what I can accomplish, reducing the number of decisions I need to consider and decide repeatedly frees up energy and time for other things.

Simple ways I reduce the number of decisions daily life requires and ways I make decisions when I’m not in a time crunch are as follows:

1. Lay out my clothes the night before so that I don’t need to figure it out in the morning when I have a time limit for getting ready. I include my underwear and socks so everything is ready for me to get dressed and there are NO decisions to be made. My shoes and coat are ready by the front door, and so are my keys.
2. Create a packing list for things I do or places I go repeatedly. I refer to lists frequently before I go on a bike ride, take a long walk or hike, or go to the pool. 
3. When making meals, make extra.  Leftovers are easily one of the most time saving and decision reducing methods for reducing stress.  Think about how often you ask yourself what to make for dinner or your next meal. 
4. Automate bill payment when possible. For things like electrical or phone bills, set up bill pay so that they automatically get paid with a credit card.  I can pay multiple bills in one sitting when I pay my credit card bill. 

Lots of times it’s not about being unable to do something I want done, it’s about not remembering to do it. It’s easy to forget things if I’m out and about or distracted once I get home.  Creating memory triggers helps. Check out these easy ways to stay focused in no particular order: 

1. Make reusable flashcards.  I use 3”x5”cards for recurring tasks or habits I want to create. When I remember I need to do something and can’t do it immediately, I’ll pull that card out or make a new one. I’ll place it somewhere I look frequently. For me it’s the kitchen counter or dining table. It’s a time saver and memory jogger. These reminders are especially great when you share your home. Family members will realize that laundry needs to be done and may help without you asking. They’ll also appreciate that you’re doing things that contribute to the home when otherwise they may not have noticed.
2. Set a timer:  When cooking or doing things where I may not hear the buzzer, I’ll set a kitchen timer or phone alarm. This is great for things like laundry, cooking that requires pre-heating, or pulling something off the stove.  It’s not a failure to need to use these tools. I know people with perfect cognition that get distracted and nearly burn the house down by putting something on the stove and forgetting. The timer is a necessity for reminding me I turned on the oven or put a load of laundry in the wash. I don’t necessarily need to have a reminder card for that (even though it doesn’t hurt), but there are instances when the timer goes off and it takes me a moment to remember what it’s for.
3. Leave myself a note: When needing to do something at home, I’ll put a note in a hot spot I see frequently. At home it may be next to the kitchen sink, on the dining table or in the bathroom. At work it's a post-it on my computer monitor. Sometimes I'll even leave a post-it on my car steering wheel. 
4. Put appointments and reminders on the calendar in my phone with an alert.
5. Create lists for what I need to bring for things I do repeatedly. I have lists for going for a walk, bike ride, leaving town, getting back from out of town. I also have a pretty standard list of grocery items that I frequently eat. The point is to ease up on the number of times I need to figure out the same thing.

Often the difference between feeling overwhelmed and feeling like things are doable is one task or obligation.  If you’re stressed out and having a hard time getting things done, be brutal.  Remove things that don’t absolutely need to be done the way you’re used to doing them or would prefer to have them done.  What’s the minimum necessary to get it done, and when is the deadline? What can be delayed until tomorrow, next week, or next month? What doesn’t need to be done by you or at all?

Get over the feeling that it’s embarrassing or not okay that you need reminders. I once had a family member laugh at me because she saw my reminder on the counter to “Pack” for a trip.  She thought it was absurd that I was reminding myself to do something that was obvious.  Yes, it was needed and obvious, but my simple reminder kept me focused and less stressed.

I’ve learned that a single tracking or organization tool isn’t going to work for everything I want to remember or do. Just like Facebook, Instagram, Pinterest, email and texting have different strengths and times where they’re appropriate, organization is a compilation of lots of little methods.  Think about what works and why it works for you.  Then build on that.  Where do you need to remember things and where do you frequently look? Make a system that works for you.  It’ll be unique to you, your life, and your priorities.  

My Wellness Litmus Test & Sphere of Wellbeing

If I distill my health down to a litmus test to objectively judge my level of wellness, it boils down to this: How am I naturally behaving right now?

How I naturally behave is a reflection of the thoughts in my head and how I perceive the world. Am I struggling with something, or am I content?  Am I interacting with other people positively without thinking, or is it taking extra effort to behave in a socially acceptable manner?  Do I respond to inconveniences with frustration or compassion?

When our physical health is compromised and we’re sick, injured or chronically ill, it’s easy to be grumpy.  After a car accident in high school, I lived with a constant headache for five years before having jaw surgery to correct TMJ misalignment. During those years, constant physical pain became normal. There were likely many moments I was grumpy.  But living with pain didn’t preclude the wonderful times I experienced, nor did it override my sense of wellness. It was a part of the experience and something I worked on trying to improve. MS is like that for me. It’s an inconvenience and something I factor in to my daily decisions and life choices. With years of monitoring my health and adapting, MS has become only a part of my experience and not a constant dominating fear.

That said, MS does affect how I feel and can make me feel a little unwell at times.  It doesn’t mean I’m not well. It may just mean I need an adjustment, a slight course correction to stay on the wellness path. Converting the realization that I’m not as well as I want to be can be done by thinking about the areas of my life that contribute to my wellbeing.

When I list them all, the list gets long, and I can overthink it pretty quickly. Thankfully ruminating is an enjoyable hobby for me. I loved reviewing wellness wheel graphics online and seeing how other people explain factors for health.

There are a lot of variations of the wheel of wellness and they can be used as a starting point, but I think it’s important to think about what you care about, not what you think you should care about.

I want to learn, contribute, be active, have meaningful relationships, feel good and look good. I want to be financially stable, have a tidy home and travel. For me being well means I can do at least a little of each without neglecting other aspects of my life that are important to me.

What if someday never comes? And what if it does? For me wellbeing is enjoying life today while planning for a future. The perfect day for me would include rest, activity, relationships, learning, contributing, creativity and celebration.

Look inside yourself, look outside yourself, and think about the mark you want to leave. If I wanted to score wellness for myself, it would be a complex equation with many, many variables. In my attempt to create an equation I visualized a sphere that magnifies based on my areas of health. When I focus on things I can control, say, do or believe, it bolsters my sense of wellbeing. It distracts me from things I can’t control, and it genuinely boosts my mood and love of life.

What would you add for your own sphere of wellbeing?

The Sphere of Wellbeing

I Am An Athlete

I’ve always thought of myself as athletic, but I could never break the barrier to believing myself an athlete. The same way I think of myself as artistic and not an artist. As someone who writes, not a writer.

I swam, did gymnastics, and was always active as a kid. I played volleyball and was a cheerleader in high school. I continued to be active as an adult, I did gymnastics in my 30’s, and I ran a local 12k race each year. At 38 I was diagnosed with MS, and it made me question how much I’d be able to aspire to. Still, I did a marathon last year, a sprint triathlon this summer, and an Olympic distance triathlon this fall. 

Running today I thought about how much I downplay how I do things. I’m happy I do them and proud of what I can do, but I qualify these skills knowing I’m not as accomplished at them as the real athletes, artists and writers.

What am I waiting for?  Does it matter if others agree with how I see myself? Of course not. So today I decided I’m already an athlete. I don’t need to wait until I’m faster, stronger or perceived as an athlete.

I think this will be a good attitude to hold for reaching goals and designing my life. If I believe I’m already an athlete, I think I’ll be less likely to give myself an out when faced with temptation to do things that conflict with that label. I may be inclined to aspire to more instead of thinking only the real athletes, artists and writers can accomplish that goal. I may not hold myself back as much.

I put together a photo composite to help me remember, “I Am An Athlete.”

Creating Some Order in the Medical Billing Chaos

Medical bills can be daunting to track when a person is healthy and only has a few appointments a year. When a person is injured or has a chronic illness, the number of medical bills and insurance statements that arrive by mail can be staggering. Compounding the confusion is that they’re often confusing to read and understand.  Trying to track them and know which bill has been covered, denied or ignored can be overwhelming. It can also get very expensive if you end up paying for things your insurance should cover.

Medical Billing Tracking example

Keeping a checklist and single filing spot for these medical bills and insurance statements lends some order to the chaos and helps reduce the stress of dealing with financial tasks.  It took me a while to come up with this method, and since it’s evolved to a pretty simple method it works for me.

I created a checklist to track each visit with information needed to track payment. I use a fresh checklist for each doctor’s visit, MRI scan or lab test since each one may require working with different billing companies.  I print these on 4x6 index cards, but you could use any size paper that works for you. I’ve included a blank Medical Bill Tracking Sheet and one that I’ve filled in as an example in this post.

1. After a medical appointment, fill in the top of a Medical Bill Tracking sheet with the year, provider and the date the Appointment/service provided.
2. When a bill or insurance statement arrives in the mail, open it, read it, and add notes to the tracking sheet. Staple the bill or insurance statement to the back of the tracking sheet. Any time a new piece of mail arrives regarding that appointment; staple it to the back of the tracking sheet.  It will build up to a stack of papers that all relate to that appointment. 
3. For an insurance statement, see if it was paid or denied. Often, if it’s denied, they’re really asking for additional information before making a final decision on the claim.  You’ll have a time limit to provide the information, so it’s important to read it and understand what it says.
4. If you have more than one insurance plan, coordination of benefits can become a part time job. Get used to calling each of the insurance providers to ask who has covered what and what they need to keep processing the payment.  You may need to call the other insurance company or medical provider for information to fax to another company. Be prepared to spend a lot of time on hold when you call. Take good notes and get used to being your own financial advocate.
5. If you receive a bill from the provider, look to see if insurance has covered anything.  If it’s not listed on the bill, call the provider to see if they’ll bill your insurance. If not, you may need to submit the bill to your insurance company yourself. I’ve often had instances where the bill wasn’t paid by my insurance company, but when I called the provider I was able to confirm my insurance information and have them resubmit the bill to insurance.
6. Sometimes the provider doesn’t hear back from insurance and will send you a bill for the full amount.  If that’s the case, call your insurance company and ask what the status of payment is. I’ve had providers frustrated that they hadn’t received payment after billing insurance.  One year each time I called my insurance company, the representative would ask questions about the date of service and provider’s billing date before telling me the bill was in process and would be paid next week.  It seemed like a game and too coincidental for every bill, but I just factored it in to the process for moving it along.
7. Once insurance has paid for medical expenses covered under your policy, you should receive a bill from your provider for any amount you owe.  Make sure it matches what your insurance statement says you owe. If you’re not able to pay it in full, call them and see if they’ll offer a sliding scale or payment plan. 
8. Remember there are national and community assistance programs available for people without insurance or ability to pay for their health care. Call the Multiple Sclerosis Association of America or the National Multiple Sclerosis Association to see if they offer assistance or if they can suggest another organization that may be able to help.
9. File all of these tracking packets that have been paid in full and are done in one place. You may need them to confirm payment was received if duplicate bills are sent before they receive payment. If you receive a duplicate bill, staple it to the stack. Don’t throw anything away in case the provider doesn’t apply your payment correctly.
10. If you talk to anyone along the way, write it on the bill or the tracking sheet. Know and write down the name of the person you talked to, the date, and what was said. Being friendly and knowledgeable goes a long way to clearing up any confusion and getting help from people to resolve any problems.

Things to know about your medical insurance coverage:

• Deductible amount for each year
• The out of pocket maximum your policy covers, if applicable
• If your policy includes a Health Reimbursement Account (HRA) the amount you’ve earned for the year.

Knowing this information will help you anticipate how much money you may need to dedicate to your health expenses each year. I assume I’ll need to pay the maximum out of pocket amount each year, and I budget that amount for the beginning of the calendar year. It’s also handy if you itemize taxes and need to know what you spent on medical expenses during the year.  Another benefit of having your records in order is that someone else could understand the status of your bills if you need someone to step in and assist you.

Keeping my finances in order allows me to avoid a lot of stress and time wasted figuring out what’s been done and what hasn’t. While the instructions for tracking this may seem obvious, it’s nice to be able to go back to the steps and checklist when the volume of paperwork gets overwhelming. 

Blank Medical Billing Tracking Checklist

Embracing Change

In the last three years so much of my life has changed.  

My beyond two decades long marriage was ending while my career took a completely unexpected and welcome turn. I moved to a new place, and I had a few surgeries. Valued in-person friendships were no longer nearby, and they shifted to Facebook interactions. All of my daily routines I had in place no longer fit into my new life, and I spent a lot of time redesigning them. Often it felt like my entire life was tossed in the air and landed scattered on the ground. Picking up the pieces and deciding how to arrange them again took up a lot of my time and mental energy.

Any of these changes would have been big for me, but juggling them all at once took a lot of effort. MS was a factor in this because I strived to maintain my health throughout these changes. My biggest goal was to avoid an MS exacerbation, and fortunately I succeeded. 

Experiencing change can alter how I view the world, myself, my past, my future, and the people around me. It’s a mental shift from what I thought I could count on to knowing how vulnerable and impermanent everything can be.  Diagnosis of MS made me question my body’s abilities and health. I thought my body was strong and healthy. Being diagnosed led me to realize that a healthy and mobile future isn’t necessarily in my control. I can eat right, exercise, and get checkups, and still have no guarantee for good health or the ability to walk in my elder years.

Adjusting to change is a skill I’ve cultivated to save my sanity and bring myself mental peace. Some years ago, my New Year’s Resolution was to, “embrace the things that I resist.” It was a great experience acknowledging when I was resisting things and actively shedding the internal resistance I had to doing them. When I was nervous about running a public meeting, I decided to dive in and just do my best. When I liked a fashion choice that I thought might be too flashy, I decided to try it anyway. When the group sang karaoke, I got up in front of the group with my not great singing voice and sang my heart out. I knew I might sound terrible or look silly, but I let myself have fun doing it.

My personal challenge that year allowed me to think about and recognize why I resisted things, and it helps to think about it when dealing with change. Most of the time my resistance stemmed from the following:

• Uncertainty for what the next step was or how to decide
• Being afraid that following that step would lead to an outcome I feared
• Being overwhelmed from the quantity of things to deal with at that moment
• Fear of making a mistake, making what I would later judge as a wrong decision, failing, or being judged negatively by others
• Holding on to a belief that I have control over the future, others, or anything other than what I do, say or believe.

Coping with change: 
With MS, a lot of change stems from the domino effect of losing mobility, cognition and physical abilities. Focusing on these losses can lead to depression and a sense of doom. When an exacerbation hits, it’s natural to worry about where it will lead and how it will affect the future. It’s all understandable and natural, but it’s also incredibly unsettling, frustrating and just plain hard. I try to embrace changes I’m resisting by doing the following: 

1. Recognize that feeling unsettled, nervous or fearful is natural. Accept it will be stressful but try to do what I can to minimize the stress.
2. Think about why the change is stressful. Does it require changing my life, my relationships, or just my attitude?
3. Seek inspiration and motivation from people who have lived through a similar change. What insight can they lend?
4. Pace myself. Take on only a few extra tasks each week or month, and reduce some of the things that aren’t necessary for my physical or mental health. Know that my regular life still requires a lot of energy, and something needs to give temporarily.
5. Know the deadlines and what’s at risk if they aren’t met. Give myself enough time to do things, but not too much so that it feels never-ending. 
6. Break down the steps to dealing with change into smaller doable tasks to avoid getting overwhelmed.
7. Prioritize based on importance, deadlines and energy level. If my energy is low, I’ll do the easy tasks for now and the more involved tasks at a time of day when I have more energy. Certain things may also be able to wait months.
8. Wait to start until I’m ready to commit. I keep a list of things to do, but I don’t start until I’m ready to do them and complete them.
9. Set realistic expectations and ambitious dreams.
10. Look forward to something. Whether it’s seeing kids or grandkids grow up and being a part of their lives, traveling, dancing, watching the sun set, or anything else small or large that brings joy. 
11. Enjoy the path I’m on even when portions of it are difficult. Give myself credit for all of the things I do that aren’t hard because I’ve put so much effort in the past into getting better at them.
12. Trust that I’ll do what I think is right for me each step of the way and that it’s enough.

Dealing with change has been a learned skill for me, and it’s taken a lot of effort to cultivate that skill. It’s been worth the effort to reduce my internal stress and increase my sense of contentment. Relaxing into and embracing change has improved my confidence, given me opportunities and experiences beyond my expectations, and made for a much more satisfied and joy-filled life.