Sunday, May 13, 2018
Living with an illness with no proven cure leads me to treat myself as a guinea pig. I read about the latest studies and breakthroughs for MS and auto-immune diseases. I seek recommendations from people that are managing their health well. I compare what I’m doing to the treatment and see if it makes sense for me. If the risk is low and I’m not doing it already, I’ll give it a shot. It’s a very unscientific approach. But given I’m bumping up against an unknown date when my MS could progress, I’m not willing to wait until all the studies are in when it could be too late for me.
I’ve tried eating vegan, vegetarian, gluten-free, dairy-free, low-fat, and paleo. I’ve followed the Wahl’s Protocol, the Auto-immune Protocol, and elimination diets. Some of these personal trials helped, and some didn’t. Over the course of a couple decades of trial and error with my food choices, reading everything I can find, and obtaining the guidance of a naturopath to help me develop my dietary choices, I’ve found a good mix of dos and don’ts to follow. It’s one that I can maintain, and it seems to be working.
All this is in addition to following my neurologist’s recommendations to take a disease-modifying medication (suppress my immune system to reduce the frequency of relapses), eat healthy, rest, exercise, sleep and reduce stress.
In the United States, until something is FDA approved and a standard recommendation from our providers, it’s considered alternative when used in place of conventional medicine and complementary when used in addition to standard treatment options.
My food choices are a complementary treatment to my MS Neurologist’s treatment advice. In the past when I’ve brought it up to him, he’s been skeptical of the benefits of special diets beyond eating healthy per USDA guidance. He also doesn’t see the harm so long as I’m getting adequate nutrition. I think it’s been a big part of managing my MS well. This approach is validated more and more each day as studies show a connection between good gut health with the right mix of bacteria in the intestines and better health for all people, not just those with MS.
I’m closely watching advances in stem cell treatments whereby people with MS undergo stem cell transplants to reboot the immune system. People are getting the treatment by participating in studies, traveling to foreign countries, and initiating GoFundMe collections to pay for the treatment. Some have reported great improvement while others have found no change. For now, it’s an alternative or complementary treatment. Hopefully someday in the not too distant future, it continues to provide success for enough people and obtains approval in the US to become available as a standard treatment option. With continued studies and willing participants, I’m optimistic it will happen. From groups on Facebook, I’ve read from those that have had treatments that stem cell treatment is something that is not a one-time cure for MS. So far, it’s a method to slow progression of MS for people. If the medication I’m taking wasn’t working for me and I qualified for a trial, I would consider this treatment.
With any self-care, it’s important to tell your care providers what treatments you’re doing. Supplements are easy to self-prescribe, and it’s good to have lab tests done to see if any blood levels are outside of normal levels. Some herbal remedies may counteract medications you’re taking.
If my provider isn’t on board with a treatment but it’s not dangerous, I’ll make it clear it’s my decision whether or not to continue non-conventional treatments. It’s uncomfortable for me to go against my doctor’s recommendation, but standing firm and owning my treatment decisions is a good skill to cultivate. I’m the one who will live with the consequences, and my comfort level with the risk is ultimately the one that needs to prevail.
Sunday, April 15, 2018
Living with a chronic and progressive illness like MS includes living with fear, pain and diminishing abilities. It's rough. It can make me grouchy and impatient. But it's not a pass to treat people poorly. It takes more effort to be appreciative and pleasant when I'm tired and feeling crummy, but it's a tremendous life skill to cultivate. Sometimes I succeed, and sometimes I fall short of my goal. When that happens, I follow up with that person and try to repair any damage.
I’d rather people support me because they want to be there with me. If someone is helping me solely out of obligation or pity, their resentment or condescension will come through in every interaction. No thank you.
Feeling like a burden isn’t helpful to anyone’s physical or mental wellbeing. And being treated like a burden isn’t fair. Every person has challenges and limits, and we all have needs. Needs aren’t weaknesses. Some of our needs are just more visible or less common compared to what’s thought of as normal.
My best relationships are those of mutual admiration and appreciation. We help each other often, but we make sure we respect our limits so that nothing is done with resentment.
I’ve put together some guidelines for myself to build healthy and positive relationships:
1. When people show kindness or concern, accept it graciously. If I discourage it because I’m embarrassed, grouchy or feeling like they’re being pushy, they’ll eventually stop asking or providing support.
2. Notice when I feel better about myself after interacting with someone. Put extra effort into connecting with them.
3. Notice when I feel worse after interacting with someone. Consider possible reasons, and be honest about whether it’s me or them. See if there are ways to improve the relationship. Let it go if it’s not a critical relationship. Pursue sincere conversation or counseling for the relationships I’m not willing to let go.
4. Know that letting go of some relationships will be necessary for my health. This is really tough. Try to wish them well and move on.
5. Be a cheerleader for others. Share in their joys and accomplishments genuinely and without jealousy, and express sympathy and encouragement when they’re having a hard time.
6. Be willing to accept help. I’d love to be completely self-sufficient and strong, but refusing help pushes people away. Remember accepting help might make them feel better too.
7. Grant people grace when they periodically commit a friendship blunder. Hope they’ll do the same for me. People will never respond perfectly in every situation, and anyone expecting perfection is being unreasonable.
Striving to follow these guidelines has improved my relationships immensely, and it’s created a positive support network that I can count on when I need it. We support each other and don’t keep score. Having them around makes every challenge easier to tackle and every loss more tolerable to accept. Plus, the effort I put into adding positive energy in the world helps me feel I have value and just plain feels good.
Sunday, March 11, 2018
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.
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.
Wednesday, February 28, 2018
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.
Tuesday, February 13, 2018
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.
Tuesday, January 30, 2018
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:
- 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.
- 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.
- 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.
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
Thursday, January 18, 2018
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.