Trying New Things: The Rewards Usually Outweigh the Risk

I’m realizing I have a pattern of planning ambitious goals or adventures when I’m feeling my lowest.  My guess is that it helps me to look forward to something. It’s a way for me to get outside of my head where I’m thinking about how tough things can be. 

It’s reasonable to limit activities when you have health issues.  Addressing nutrition, rest, fitness and overall wellbeing is a full-time job.  Just the idea of adding a new activity or event to my schedule can create anxiety for what it will take to make it happen. 

Doing things outside of my routine usually involves budgeting my energy leading up to and following the event.  The lure of staying home and resting is comforting, and conceding to that tendency isn’t a bad decision.  It’s often easier and causes less conflict with people who care about us to stick to activities that clearly help our physical health.  They may think, and we may agree, that we may be compromising our health and taxing our bodies by pushing ourselves. 

I think the key to why this matters is that having a chronic illness can make a person feel weak, powerless and like a victim.  Feeling like that is depressing.  Setting goals or doing things outside of our comfort zone creates a feeling of adventure and accomplishment.  It adds to a sense of strength and empowerment.  This is one area of life where I think one can help offset the other.  It’s hard to feel powerless when you’re kicking butt doing something you’ve never done before. 

It was at a very low point in my health that I found a Groupon for doing trapeze (read about it here) and decided to give it a shot.  I bought it and planned going with a friend.  Assuming I would feel better at some point and planning the excursion was something that inspired me. It also distracted me from how I was feeling at the time.  I went on to do the trapeze class, love it, and go back many times.  I tried it, succeeded, and built up my physical confidence.

Conversely, I don’t even need to succeed by someone else’s standards to feel empowerment.  There are times when we find ourselves in a situation where we can take the safe route or we can jump in to a new experience. I once endured an uncomfortable and socially horrifying event at a professional conference dinner, and I now think of it as an achievement for me.  Picture this:  I enter a hotel ballroom where only two tables have people sitting at them.  One table with ten place-settings is full. The other has eight twenty-year-old Japanese students.  With two seats open at that table, I embraced the moment and asked them if I could sit with them. One of the young men said I could.  I sat down, and then the other tables filled up around us.  I quickly realized I was now sitting at a table with eight Japanese men where only one of them spoke English.  I don’t speak any Japanese.  I conversed with the one young man about professional topics to find some commonality.  While I did, it was clear the rest of the men were commenting about me and laughing at me.  They weren’t subtle, and I’m positive I wasn’t being paranoid. I found myself in a situation where I felt I needed to stay gracious and endure. It was a sit-down dinner, and I felt stuck until dessert had been served and cleared. At an opportune moment, I thanked them for welcoming me and jumped to an empty chair at an adjacent table.  My guess is the time at that table was only about 30 minutes, but it felt like hours. 

Having dinner with men I didn’t know, where we didn’t speak the same language, and where I was being laughed at was a difficult and social disaster.  But I hold it up as a benchmark experience.  It’s a figurative badge of honor for me to believe that if I can experience that, then I can probably survive any social interaction.  It helped me feel a lot more confident, and that’s a huge deal given how shy and insecure I used to be. 

This experience helped me build my social and emotional confidence.  Trying trapeze helped me with my physical confidence.  Both of them reduce the chance that someday I’ll have regrets for what I didn’t try.  Any chance we have to push ourselves outside our comfort zone for things that seem intriguing will have a reward.  That reward may be for accomplishing it well, and it may be for just enduring and surviving.  Either way, we win.

Necessary Medication and Politics: The Devastation Falls on Patients

Last week I received a phone call from my pharmacy telling me that my insurance no longer covers my MS disease modifying medication. One year ago, I read an article about expected price increases for MS disease modifying medications that were insane given the history of MS medications.  Tonight, the President says yet again that reducing high drug prices is one of the top priorities of his administration.  Neither he nor congress (both parties) have made any progress on this with any results.  I don’t know and can’t figure out what the strategy is to accomplish this.  I hope they can, but I fear it will be on the backs of individual patients.  I fear we’ll lose medication options and our doctors will not be at liberty to prescribe what is appropriate for us. While congress and pharmaceutical companies bicker, we as patients will suffer the consequences from lack of care and disease progression.  

The medication I take is one of the first ones to come on the market in 1996.  It came in a dosage of seven injections per week. In 2015 they came out with a version that is three injections per week and has a new patent with all of the benefits that come with precluding generics and competition. Same formula, different dosage.  Both are astronomical expense.  Generic is $60,000 per year. Non-generic runs $73,000-$89,000. My insurance has covered it for the last nine years and has now decided it won’t cover it at all – name brand or generic. All of the other medications cost more.  

I’m now in the position of needing to work with my doctor to try new medications to replace the one that’s been out the longest and has worked for me.  In order to alleviate problems I was having with seven injections per week, I tried two medications a few years ago and ended up with non-stop nausea from one and hives all over my body from the other. It’s daunting to embark on this effort when I have a lot of other things going on in my life to tackle.  Regardless, I’ll do it. Living without proven medications isn’t an option for me.  Hundreds of years have proven that when living with MS going without medication leads to faster disease progression and disability.  It’s not worth the risk.

Know that pharmaceutical companies are making big profits for their stakeholders.  They don’t have a track record of reducing prices to the customer over time. When I started with this medication, it was $36,000 per year. Last year it was $76,000 per year. They claimed years ago that the price would go down once a generic was available, but it hasn’t.  And now, I’m told that my insurance won’t cover it at all. Same medication, different politics.

The medication I take is the least effective and has the fewest side effects.  It works for me. I haven’t had a relapse in six years. Yet now I’ll need to try medications that have higher efficacy and more severe side effects including liver damage and even death for some.  It’s scary and I think reasonably so.  My approach has been to take a medication that works with the least side effects.  Insurance is not going to allow me to do that anymore. 

I have three months of medication in my refrigerator to tide me over. I have this because over the course of two years I've stretched my medications to allow a stockpile.  I'd prepared for emergencies and wanted to be covered if I wasn't able to get my prescription filled. I’ll see my neurologist in a few weeks and will discuss my options.  Until then, I’ll do my research to see what my options are.  Options I’ve identified are:

1. Appeal the insurance decision.  I appealed and won a couple years ago.  It took six months with no guarantee that I would win.  I went without any medication for six months. It was worrisome and frustrating, and that’s not conducive to good health when trying to reduce stress.  I did it, but I’m not sure I’m up for it again right now.
2. Go without medication.  Before these medications were available, people with MS were likely to be disabled needing walking assistance within ten years of diagnosis.  I’m at year nine and doing well. Going without is not an option, and I don’t think I should be expected to go without.  Please also know that cost of care for me will be much higher if I’m in a wheelchair, can’t work and live with all of the associated health problems that come with disability. 
3. Find a new medication.  I’ve tried two in the past that caused such misery they were not an option for me.  Insurance companies want to treat all patients the same, and we’re just not.  What works for one person doesn’t work for another.  What helps one person causes severe side effects for another. We need to keep trying different medications each time one doesn’t work, and we hope we don't run out of options.  One I tried for nine months before giving up. Another took six weeks before my body broke out in hives and I had to cease taking it.  Each time I try a new medication, it takes months to get approved and use it before I’ll know if it’s going to work for me.

I’ll work on finding a new medication.  I’m frustrated and not looking forward to this.  Yet, here I am.  I work, I have good insurance, and I live in a prosperous country.  I should be in a good position on this, and I get that I have it better than a lot of people on earth.  But don’t overestimate our good fortune in the US.  Other countries have figured this out better than we have.  Let’s learn from them. Enough said.

On February 28, 2018, I wrote a follow up post. Read Part 2 of my pharmaceutical medication denial and decision reversal Necessary Medications and Politics: Part 2

You’re Not Doing it Wrong

Online headlines and articles give a pervasive message – You’re doing it wrong.  Whatever the topic, they’ll say you’re missing something, you’re doing it wrong, or you’re just clueless.

The judgement and arrogance is exhausting and irritating.

Please, please, PLEASE tell me things that will help me live a better life.  Encourage me, reinforce me, and motivate me. But please don’t put everyone down while assuming NO ONE has already figured out what you just figured out and are preaching.

There are times I’ll read an article that claims it has the absolute answer, and I’ll think they are five years to a decade behind the times on the latest research. 

They’ll say since you’re not doing it the best possible way that you’re doing it wrong.  Nope.  I disagree.  I also question whether their opinion of what is best is going to withstand the test of time and scrutiny.  It may be completely debunked in a few years.

They’ll assume that if you have a problem with something then you’re not doing what works for them.  Often, I’ll look through guidance and I’m already doing all of the recommendations like a pro.  Doing more might actually harm my health.

Doing some of something healthy is generally going to be better than not doing it at all, and I think the articles that discourage anything less than perfection do us all a disservice.  It’s all relative to where you are now. Online articles have no idea how much I’m already doing, and telling me what to change isn’t going to help.

Good rule of thumb – if someone tells you what you need to do before asking any questions, they don’t know.  Keep learning, dealing with problems and becoming who you want to be, but don’t let an uninformed internet oracle decide what’s right for you. 

I experienced this lesson in a glaring way when I moved.  I had health habits and routines in place that I’d put a lot of thought into and worked perfectly for me.  I moved to another place, and so many of these things no longer worked for me at all.  If something that worked for me in one moment stops working for me when one change is made, then I have no business assuming something that works for me will automatically work for someone else.

We need to know our own bodies, lifestyles and our tendencies given health conditions and vulnerabilities. We can get inspiration, motivation and helpful tips from each other, but in the end it’s trial and error to see what will be useful to each of us.  There’s no one right way to maintain health and no universal prescription for all humans. If you’re doing it differently and tailoring things to your body, you’re not doing it wrong. 

I Need To Up My Game: Prioritizing Needs

When I feel great, there’s no need to change what I’m doing.  Following new and improved advice may actually break the complex formula of nutrition, fitness, and lifestyle that keep me in good health. If I’m not feeling well, figuring out what I need and prioritizing it within the mix of all my other needs becomes an issue. 

We subconsciously prioritize and adjust our behavior to meet our needs all the time.  For me the demand to put effort into prioritizing needs comes when I don’t feel well.  I’m stressed, something hurts, or some part of me isn’t working as well as usual.  It could be one small thing that is snowballing into a big issue, or it could be a big issue that’s easy to identify yet overwhelming to fix.

This past year, my pain level increased to a level that was affecting sleep and causing debilitating discomfort.  I researched possible causes and tried stretching, massage, supplements and rest. It helped a little but not much.  I went to a massage therapist who worked the muscles, and it caused almost unbearable pain for days. Through my neurologist, I tried medication and was told I’d need to take it for a few weeks for the side effects to mellow out.  I gave it a good try, but I could see it wasn’t going to be a good long-term solution for me right now.  I obtained a referral for physical therapy, and there I had someone work with me to specifically design a fitness regimen that will address my nerve pain. She assessed my personal condition and through trial and error pinpointed the cause of the pain.  She helped me devise a mix of exercises that will increase my strength, improve my balance, and hopefully reduce the nerve pain I’m living with.

Each step of the way, I had to make my health a priority while still doing everything else my life requires.  While under her care, I dutifully did all the exercises she prescribed.  It was tough doing it all, and it wasn’t something that I could sustain.

When I think about doing everything the physical therapist advised, I get overwhelmed. I want to do it all, but it’s too much right now.  I anticipated this and specifically asked her what the minimum daily fitness activities would be so that I could start there.  This took being honest with myself and with her.  I had to be open to being judged negatively and accept I’m not going to be the model patient I’d love to be. 

I already have a minimum fitness routine I do every day and have been doing for years.  Seriously, I missed eight days two years ago and none last year.  I thought I was doing great, but it wasn’t enough to protect me from having problems develop.  So now I’m working on modifying my routine to deal with my changing body. I’m incorporating the minimum she gave me, and I have a long list of things to add when I’m ready.

I’m not doing everything she gave me, but I’ll get there.  And I like having the guidance for what to do when I’m ready to up my game. She may or may not approve of my approach, but I’m the one who knows me and lives with the consequences. 

It feels like slow change, but it’s not no change.  I’m in it for the long haul and doing what I can as I can. 

Let’s Not Give Up On Each Other

This morning I had a sudden crying jag.  Watching the closing credits of Saturday Night Live, I see the cast ice skating. I haven’t ice skated in years. Initially I thought that would be a fun thing to do again. A beat later I realized that I probably wouldn’t be able to anymore.  MS progression has made my feet unreliable.  Sometimes when I’m walking in shoes that aren’t flats, my ankles turn in and my walking falters.  Occasionally it happens when I’m wearing flats.  Even when I focus on keeping my feet steady, they sometimes give out repeatedly.  Surely skating is harder given my progressing limitations.

I used to roller skate and roller blade.  Maybe I could try that.  And maybe it would be impossible for me to stay balanced.  I could try, but it would take a lot of effort to get the equipment. I anticipate extreme frustration if it’s not doable for me anymore.  But maybe I could if it was in the morning on a good day. 

This is grief. Utter sadness for loss.  I get that losing abilities comes with aging, but I see examples online of people who with dedication and effort maintain impressive abilities long into advanced age.  I put the work in, but I can see that I may not be able to halt or reverse the impact MS is having on my body.  And the changes will continue.

When I read or watch stories about people with MS – Annette Funicello, Richard Pryor, David Lander (Squiggy from Laverne & Shirley), and others who had an extremely rough time of it – it makes me think of something I heard about ballerinas a long time ago. I remember hearing that when a dancer is injured, they take her off the stage and a new ballerina takes her place. 

It seems like with extreme health issues, people get set aside. They’re given up on, disregarded and left behind. Try not to think about how bad it is for them.

People say, “If I ever get that way, I’d kill myself.”  Please.  No. Just no.  It breaks my heart, and I think you’re not giving it the thought you think you are.  You’re also implying that others won’t have value if they get that way.  Intentionally or not, you’re suggesting they should end their lives if they ever become disabled.

I worry that people will expect too much of me and judge me for my choices or for falling short.  I worry people will give up on me and dismiss me while I’m still able to contribute, achieve and succeed. Yes, I’m trying to have it both ways. I know people can’t read minds and that my invisible symptoms don’t accurately reveal my health status in each moment.  I try to be aware of how I’m doing and accurately answer people when they ask. 

In my life, I try to assure people that while my health could reach those levels that it isn’t there yet.  I hope people won’t give up on me, and I mentally prepare responses to people who may dismiss me in my career or otherwise.  But I’m really reminding myself that I can’t give up on me. 

For now, emotionally coping is among the hardest parts of dealing with my disease.  The moments that sneak up on me are the toughest.  I think I’m doing it as best as possible. But part of it requires feeling lousy, letting myself feel crummy, picking myself up and finding a path to feeling empowered.   

I know I’m not being dramatic about this. I’m being realistic about my potential future. When I was diagnosed in 2008, I read a statistic that the majority of people with MS will likely need assistance walking (with a cane, walker, crutches or wheelchair) within ten years of diagnosis.

According to the National Institute of Health, odds are improved since then. 

“Multiple sclerosis is seldom fatal and life expectancy is shortened by only a few months. Concerns about prognosis center primarily on the quality of life and prospects for disability. Most patients and physicians harbor an unfounded view of MS as a relentlessly progressive, inevitably disabling disease. The truth is that 15 years after the onset of MS, only about 20% of patients are bedridden or institutionalized. Another 20% may require a wheelchair, or use crutches, or a cane to ambulate, but fully 60% will be ambulatory without assistance and some will have little deficit at all. Perhaps as many as 1/3 of all patients with MS go through life without any persistent disability, and suffer only intermittent, transient episodes of symptoms.”

This means that "only" 40% will need assistance within 15 years.  It means 2/3 of all patients with MS do live with some persistent disability eventually.  I know my MRI scans, and my disease has more damage in my spinal cord than my brain. Yes, it’s great that my mind may not be as affected. Truly it is.  Sadly though, I’m more likely to have issues with walking and related symptoms.   

When I feel this way, I try to work out why I’m feeling sad, sit with it, and then find a related small success.  I’m not giving up on my body.  I’m going to keep trying, monitor how I’m doing, and adjust my goals and activities as I go.  I’ll keep doing what I’ve been doing. 

I know my coordination is faltering. I look fine, and I’m grateful for that.  I am capable, and I still do A LOT.  I’m thankful for what I can do.  I appreciate the activities my body will allow. I know that how I’m doing today may be the best it will ever be again.  I also know that with determination and diligence I may be able to improve my agility, balance and endurance.  I’ll only know for sure with time and effort.  Regardless, the outcome is not wholly within my control. 

With all of this running through my mind, I laced up my jogging shoes and headed out for a run.  I planned to see how I felt in the first mile and then decide how far I could go today.  I resolve the key is that I keep trying and enjoy every accomplishment.  If I can’t go far or fast today, maybe I will tomorrow. Today I managed well. I jogged a slower pace with a longer distance than usual.  It was tough but felt great.

Later I spent time with friends laughing and enjoying life. All things considered, life is pretty great.

Enjoying the Holiday Season When Health is an Issue

There are reasons to stress all year long, but the added social events and holiday tasks in November and December consistently encourage us to overdo it. People expect things from us, and we place expectations on ourselves. 

Sometimes – or a lot of times – “just” getting to work, paying bills, keeping house, caring for others, and maintaining some modicum of basic health is an overwhelming goal.  Add the holiday season expectations, and those of us with MS can be vulnerable to increased symptoms. 

I firmly believe that these suggestions are good for anyone, those in perfect health and those with chronic illnesses.  It’s just that what may be optional for them is critical for us.  

Establish the minimum:  Decide what the absolute minimum is that you need to do to maintain your health and be happy this season.  Not being able to do everything we want to do is a daily harsh reality with MS, but being strategic about how we spend our time and energy can help alleviate the discouragement.

For holiday tasks, be very clear on what is needed and what is preferred.  Anything beyond what is necessary is a choice, not an obligation.  Sometimes just a shift in thinking can change how I feel from resentment to joy.  If I’m doing something expected and I’m coming from a place of resentment, I will suffer. When I’m gifting, I’ve decided this is something I’ve chosen to do and I’ll feel good doing it.  When it’s appreciated, it’s only an added bonus.   

Reduce the demands: Ask yourself the following:

• How can I do this so that it lessens my burden?
• Can someone help?
• Does it need to be done at all?
• Can it be done at a different level of effort?
• Can I purchase it without compromising my finances?
• When someone asks me to do something, I’ll ask them the questions above. I’ll ask myself: Would I enjoy it, and can I do it without overloading myself? If I’ll resent it, I better adjust my attitude or not do it.  

Organize and plan ahead: Don’t expect to remember everything without any extra effort.  I keep a list of holiday season tasks that I want to make sure I do each year. It includes things I’ve done in the past, mailing due dates for cards and packages, gifts given, gifts received, thank you notes sent, and events attended.

If possible, I’ll proactively schedule time off from work to do holiday tasks.  Trying to accomplish them all during evenings and weekends often doesn’t allow enough rest for maintaining health.

Make room for joy: Connect with loved ones in person or by phone, text or letter. For many years I’ve alternated between Christmas cards sent in December and New Year’s cards sent in January depending on how much I had to do that season. Some years I didn’t send cards at all.

Include time to recharge in ways you love that feed your soul.  I love getting outside and moving my body. It’s important to not just set sights on getting through the holiday season.  Experiencing joy along the way is crucial for my sanity, and I will not do without just because I have a chronic illness. 

Adjust to changing plans: I’d forecasted the things I would do this holiday season to match a level that I thought could accommodate my MS fatigue.  Then my career placed demands on me I hadn’t anticipated.  Sure, I whined about the surprise demands before verbalizing that it’s my choice to participate.  The truth is I want to do these events; it’s only the scheduling that frustrated me given it challenges me with fatigue.  To adjust, I found time on the work schedule where I could come in late or take some time off to offset the longer days.  I also talked to a couple people who scheduled the events and asked them to consider spacing them out if done again in the future. 

Receive judgement with compassion: People will judge the choices you make.  Understanding that we can no longer do everything we’ve always done is hard to take for those that know and love us.  Sometimes it’s not about the task, it’s about them wishing our health will be okay.  It’s hard for us, but it’s also hard for them to accept that we have a serious illness that affects every aspect of our lives. Other times due to the invisible symptoms we experience and successfully accommodate, they forget we have limitations.  It’s up to us to share our limitations when they affect others.  No one who cares about us really wants our health compromised because of them.  Usually they don’t understand that the little things could be a tipping point for us that requires a long time to recover. 

It takes a lot of effort to live well with a chronic illness among people that have much more natural energy. They haven’t been forced to face these issues, and they may not understand how little things for them can be big things for us.  It’s our job to take care of ourselves while nurturing relationships and living a life we love.