Managing MS Relapses

Managing MS relapses can mean different things to different people, and success varies immensely depending on how long you’ve had Multiple Sclerosis, the symptoms you experience, your level of physical ability, your disease course, and your expectations. When I think of managing relapses, I think of treating, avoiding and learning from them in order to slow disease progression and reduce the justifiable fear that comes each time one occurs. 

• We can treat relapses to try to shorten the duration.
• We can try to avoid relapses with lifestyle and medication. This is an idealistic goal and may be possible, but it places a lot of blame or praise on the person with MS.  It’s a pass-fail test that doesn’t necessarily correlate with how well a person manages their health.
• We can learn from relapses each time we have one to better understand how our body works.
• We can work to manage the fear that comes with relapses and disease progression.  This part holds a lot of mystery and is sometimes the most difficult part.

When I was first diagnosed, I had no idea at any given moment if I was having a relapse or not. My scans made it clear I’d likely had MS for over a decade before diagnosis, and I’d had no idea I even had a health issue.  My symptoms were just my life, and I had no comparison.  It was scary and felt unpredictable.  I didn’t know if there was anything I could to do reduce them, if I was doing things that made it worse, or if at any moment I was in the midst of a relapse. 

Managing relapses at that time meant figuring out when I was having one and trying to stop it once it started.  It took learning about MS symptoms and paying attention to how I felt.  I compared how I felt to my MRI scans and neurologist’s assessment in order to know whether or not I was having an MS exacerbation.  Steroid treatment was done to try to stop relapses. Because my biggest symptom was fatigue and I had no way to objectively measure it, I lived in a fairly constant state of fear and self-doubt.  What got me through was a belief that I would get through this phase and learn what I needed to know to live with MS. I didn’t know how, but I trusted it would happen eventually. 

At six years past diagnosis, I experienced an MS milestone. I achieved a point of confidence where I felt like I could finally tell if I was having an exacerbation or not.  I knew how terrible I felt when I was having a relapse, and I knew how well I could feel when I wasn’t.  I’d learned my body enough to know which symptoms were normal for me.  I could distinguish between when the intensity and duration was likely due to existing damage from previous relapses and when it was likely new active MS activity. 

I attribute this MS milestone to constant monitoring and self-assessment.  After a relapse, I would consider what helped and what was hard about it.   I’d speculate on what would have made it easier and how I can prepare for the next relapse. I’d think about how it felt, and I’d try to match up that feeling to my test results.  When I felt poorly but wasn’t having a relapse, I’d use that information to learn what is normal for me.  Knowing that helped me increase confidence and lessen my fears.

There’s so much to learn about MS, relapses and how your unique body behaves that has no prepared reference manual or shortcut around education and effort.  It’s a moving target since our bodies are aging and old damage can cause new symptoms. There is no one proven or best way to manage health to avoid relapses.  Monitoring your health, learning all you can, and trying things to see what works helps build self-confidence.  Understanding how MS affects a body in general and yours specifically helps reduce the fear of the unknown. Reducing fear can make every aspect of living with MS more bearable. 

People with MS do not have complete control over whether or not they have a relapse.  If someday there is a determined cause, cure and 100% effective management regimen, then that might be possible.  Until then, the only ways I think relapses can be managed are to tackle them when they happen, reflect on them after they happen to try to find any patterns or contributors that you might be able to control, incorporate what helps, avoid what doesn’t, and try to make the fear manageable when they do happen.

For my post on When is it an MS Exacerbation, click here.

Necessary Medications and Politics: Part 2

I wrote a post last month describing my frustration at receiving a call from my pharmacy saying my health insurance coverage would no longer cover my main MS medication.  If you’d like to read Part 1 of this story, check out Necessary Medication and Politics: The Devastation Falls on Patients.

Here’s part 2 of the story:  Today during my lunch hour, I spent 40 minutes on the phone plodding through a total of five phone trees that required me to enter my address, phone number and date of birth repeatedly. I explained my situation to four different customer service representatives of my health insurance, pharmaceutical coverage, specialty pharmacy (for specialty drugs which are what the super expensive medications are called), and finally specialty medication coverage. The final verdict is good for me.  My medication is covered. I’m told I now have a lifetime approval for the medication.  Lucky me.  Let me repeat this, because I say this in all earnestness: I am lucky. 

I know others aren’t as lucky as I am.  The success I’ve been able to achieve in this round does not mean our system is okay. It doesn’t mean I won’t experience this in the future for other medications or treatments.  This medication is not likely to be effective for me forever.  There are other medications that I can try when this one stops working, and I could need to go through this again.  It’s complicated, scary and frustrating to have our health riding on an unpredictable and evasive system.  It causes me heartbreak each time I see someone advertising a Go Fund Me campaign to help someone with medical expenses. 

This time, it worked out for me.  There are others that either aren’t successful in navigating the system or just can’t prevail even though they’re dogged in their efforts.  If you don’t have any health issues, please see yourself in me and in others that do.  We don’t cause our conditions, and we’re not sick because we deserve it. It’s the luck of the draw sometimes, and it can happen to anyone. 

Please know how important it is to support pharmaceutical reform – In the US, the costs of old medications continue to be astronomical because the market and insurance companies allow it.  I truly believe we will not have good health coverage in the United States until we address these out of control costs that benefit stockholders and those in high-ranking positions in pharmaceutical companies.   

I’ll share the details of my experience subsequent to my last post on this subject for those that are curious.

I waited until after my neurologist appointment and MRI results to make the call to my insurance provider since I wanted to make sure that I should continue my existing medication.  I’ve taken this medication six of the last eight years, and my latest test results indicate that it’s working for me.  The best I can hope for with this medication is that it suppresses my immune system and it reduces the frequency of MS exacerbations for me.  It’s called a disease modifying drug (DMD).  With my DMD and lots of lifestyle and nutritional choices, I believe they’ve helped me reduce having three exacerbations per year to having none in six years. 

After the call telling me it was denied and no longer covered, I contacted my pharmacy and neurologist’s office.  I asked my neurologist to find my old appeal letter and send it again to my insurance provider.  I asked them to contact me if they needed anything else to help reverse this decision. 

A couple weeks later, a nurse from my doctor’s office called. She said it was resolved and I was covered.  The same day I received a letter in the mail from my insurance company saying my appeal was canceled with no explanation. 

Today I made the call to see what the final answer was to figure out where I stand.  As I said at the beginning, it was a forty-minute call that took a lot of patience, persistence and good communication skills to navigate the system.  It may not seem like a lot of time, but it’s a frustrating process with lots of wrong answers along the way.  Each time I was given information I knew was mistaken, I explained yet again what I knew to be true and requested a reliable verdict on my case. 

The representative said that I do have a lifetime approval for my preferred medication.  I am relieved and very aware of how lucky I am. 

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

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.