Beyond Doctor’s Orders: Considering Complementary and Alternative Treatments for Healing

Posted on May 16, 2018 by MSAA

By Stacie Prada

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. Continue reading →

Creating the Support Network I Want

Posted on April 18, 2018 by MSAA

By Stacie Prada

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 feel 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:

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.
Notice when I feel better about myself after interacting with someone. Put extra effort into connecting with them.
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.
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.
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.
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.
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.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

Relapse Management

Posted on March 14, 2018 by MSAA

By Stacie Prada

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, to 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 to try to make the fear manageable when they do happen.

Trying New Things: The Rewards Usually Outweigh the Risk

Posted on February 16, 2018 by MSAA

By Stacie Prada

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 well-being 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.

I Need To Up My Game: Prioritizing Needs

Posted on January 17, 2018 by MSAA

By Stacie Prada

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 before the side effects would 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.

Enjoying the Holiday Season When Health is an Issue

Posted on December 4, 2017 by MSAA

By Stacie Prada

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 put 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.

Being Grateful: Validate the Hardship and Strive for the Bronze

Posted on November 8, 2017 by MSAA

By Stacie Prada

I used to think being positive meant focusing only on the good things in life. I was really good at it too. A friend would say she’d had something bad happen, and I wouldn’t miss a beat to respond with how great it is that a worse outcome didn’t result.

I did it with myself too. It seemed like if I let myself think about the difficult things, that it was being negative. That it could lead falling into a dark place of feeling bad and never climbing out. I once had a counselor tell me after 9/11 that thinking about what happened doesn’t make you sad. What happened makes you sad.

In that way, thinking about having multiple sclerosis doesn’t make me sad. My chronic illness and progressing MS symptoms make me sad. Ignoring them doesn’t change the fact that I have both. We’re not limited to feeling one emotion at a time, and feeling sadness or frustration with one aspect of life doesn’t preclude feeling optimistic. I’d argue that we need to feel one to appreciate the other.

To feel genuine gratitude, I need to know it’s not mandatory to stuff my feelings and be happy every moment. I can’t ignore the tough parts of my life and only acknowledge the things that make me grateful. I can’t just write a list of unrelated things to be thankful for and stay sane. If I’m feeling sad or resentful, I need validation that it’s understandable to have those feelings. If I skip this step, I’m minimizing my frustration or implying I don’t have a reason to feel bad. Once I sit with it, grieve for it, and assure myself I’m not weak or overreacting, I can then choose to focus on things that make me grateful. Sometimes it’s a quick shift, other times it’s a rough climb out of funk. Either way, it helps me come to a place of genuine appreciation in my life.

I think about it as winning a bronze medal. There’s an article in Scientific American, Why Bronze Medalists Are Happier Than Silver Winners, that I think we can use in our own lives to be happier. People who compete and miss winning first place exhibit less happiness than people who don’t perform as well but still make it to the podium. Silver winners focus on the one person who did better. Bronze winners compare their performance to all the people that tried and didn’t win anything.

When I’m grateful, I’m recognizing my efforts and satisfaction. I’m not seeking perfection. I’m looking at how amazing things already are. I may acknowledge what could be better, but I’m recognizing all the ways it could be worse. Some people seem to have a point of pride of noticing the error or the flaw in things. They can make you feel like you’re never good enough. Try not to judge yourself harshly and add to feeling miserable.

How we perceive our situation makes all the difference. When living with a progressively disabling chronic illness, things will stink and be sad and frustrating and feel too big to deal with at times. Sometimes the best I can do is know that how I feel right now won’t last forever.

The measure of success changes depending on my health. If I can participate in a race and come in last, I’m grateful that given my circumstances I can do it at all. If I feel bad, I know that’s a part of the condition and grateful for the abilities I still have. If I’m experiencing a permanent loss, I acknowledge that it’s sad to experience the loss and grateful for the time before the loss.

Strive to have a mindset of someone who’s coming in third. Or someone who’s in last place and may or may not finish. You’re still doing it.

Dealing with Insurance Denials

Posted on October 13, 2017 by MSAA

By Stacie Prada

Over the years I’ve appealed a lot of health insurance denials for different reasons. I’ve dealt with getting denied for claims, denied for policy coverage, and denied for pre-approval for certain treatments. Each time I open the denial paperwork, I can literally feel my blood pressure go up. Now I have something to deal with on top of everything else.

I didn’t learn how to deal with these things in school. Yes, I learned to read, understand text and problem solve, but insurance paperwork is formal, in small print, and not always clear. Getting denied creates an emotional response with financial consequences. I see people shut down when they need to read legal paperwork, and I’m saddened when it costs them money they didn’t need to spend. I’ve learned what to do by dealing with each denial one at a time. Thankfully so far, my experiences have been what I’d think of as the minor league level of insurance appeals where I was able to do them myself.

I’ve had to prove I’m not divorced or legally separated to continue coverage for my spouse. While we were in the process of getting divorced, I legally changed my name to my maiden name and gave them the judge’s order showing the name change. My insurance company wanted proof I wasn’t divorced. I was angry and completely stumped. How do I prove I’m not divorced? There’s not a judge’s document that shows a person is still married. By talking to insurance representatives, they finally were able to tell me what kind of documents would satisfy them. I had to provide them with our marriage certificate, my name change order (again), joint bank statements with the address they had for us, utility bills with both our names, and federal tax returns to show we were still filing as married. It took all of that plus a lot of effort on my part and time on theirs before they continued covering my spouse and re-processed his claims.

I had a provider that would bill the insurance provider and would receive no response EVERY time. We finally learned the routine. First, my provider would let me know the claim hadn’t been processed for a long time. I would then call the insurance company to ask about it, and the person on the phone would tell me it was in process and should be paid within the next week. While absurd and seemingly a tactic used to avoid paying, I accepted it as part of the process with that company and my provider.

I’ve formally appealed my insurance company’s refusal to cover my disease modifying medication at a dosage of three days per week. I knew the daily dosage worked for me, but I couldn’t find seven different areas on my body to do injections each week without body tissue breaking down. I tried two other medications and lived with terrible side effects for over a year hoping they would subside without success. While appealing the insurance company’s denial, I lived without any disease modifying drug for six months. It was stressful going without something that has been proven to slow progression of MS. Not knowing if it would get approved or how long it would take compounded the anxiety the process caused me. I wish it had occurred to me to look online for examples of appeal letters. While mine was effective, it took me a while to write and was stressful worrying that it wouldn’t be successful.

I’ve had bills come through that have been denied because the provider billed the wrong insurance company. Just the most recent bill would have cost me $750 out of pocket if I hadn’t been paying attention. It astounds me to think of all the money people are paying that they shouldn’t. All because it looks like every step has been done and they’re told the remainder is their responsibility.

I know people who think that yelling at the company helps. Personally, I think yelling at the customer service representative is a waste of time. That person didn’t create our insurance system and isn’t the one creating policy at the company causing your frustration. I think the people answering phones are just following orders and trying to keep their job to support themselves and their family. Letting them know you’re frustrated is useful. Yelling and not listening increases the amount of time it takes to figure out what the issue is and what will help. It adds to my stress level and makes my life harder. Advocating for my care doesn’t need to feel like a battle. By being friendly, I’ve had pleasant interactions with insurance representatives that have brightened my day.

What I think helps me navigate insurance appeals:

If you don’t understand the denial, call the insurance company and ask them to tell you what the reason was and what you need to do for them to approve or re-process the claim.
Be pleasant to the person on the phone. If I’m upset, I’ll tell them, “I know this isn’t your fault. I’m really frustrated, so please bear with me.” I can hear the person on the phone relax, and it seems they’re more willing to help problem solve my issue.
Accept that often you’ll need to provide things repeatedly. Sometimes it’ll be each time a claim is processed, others will be annually.
Maintain good records of medical bills and payments. See my blog post for tracking medical bills if you want tips or a system: Creating Some Order In The Medical Billing Chaos. If you haven’t kept good records, just call your insurance company and your medical provider to figure out what the status is and what you can do now.
Open all medical bills or insurance statements when received to see what they say. It’s tempting to put bills and other mail in a pile for later, but that’s a habit that makes it easy to lose track of paper and time. Waiting will only compound some issues and leave you with less time to resolve them. If it says it’s covered, you’ll know how much you owe. This may shape decisions you make regarding purchases. And sometimes it’s good news!
Keep copies of documents with medical insurance files so that you know what was provided in the past. It will also be ready to send again when they repeatedly deny coverage for the same issue.
If feeling the tendency to shut down, take a break. A few minutes or days may be needed to be able to work on it again. Usually appeal deadlines I’ve seen are 180 days. Know the timeline, and don’t wait until the end. Otherwise you’ll keep getting bills that can hang over you and cause anxiety.
Share your experience with friends or coworkers on dealing with medical appeals. They often have experiences of their own with advice that may help you in your situation. You may also be helping them be better prepared for dealing with their own insurance issues.
For writing appeal letters, look online for examples. I searched for “prescription appeal letter,” and found many terrific examples to follow. If you enter the specific name of the medication or device you’re trying to obtain with “appeal letter” you’ll find lots of tailored examples. If there isn’t one specific to your situation, use the others as a guide for how to convince your insurance company to approve it.
Remember you don’t always have to figure out everything on your own. Look for your resources. There are online suggestions from organizations about dealing with insurance. Friends and family can often break down the issue to a level that’s manageable. If the stakes are really high, you may want to get professional assistance with your appeal.

Having a chronic condition that requires ongoing medical treatment is already frustrating and draining. Learning how to navigate the insurance world and cultivating the patience needed to deal with it goes a long way. It can improve your medical care, reduce out of pocket expenses, and make life a lot easier than it might be otherwise.

The Best Next Turn: Changing Careers

Posted on September 13, 2017 by MSAA

By Stacie Prada

Hands down one of the best changes I’ve made since my multiple sclerosis diagnosis is changing careers. While I still work in the same organization, I work in a completely different field. Still, I draw upon skills and knowledge I’ve gained from every job and experience I’ve had in my life.

My career path has in no way been anything a career counselor would have designed to get to the job I have today. In college, I never would have believed that I would have my current job and love it. I also never would have imagined that at age 38 I would get diagnosed with multiple sclerosis and realize with hindsight that I’d had MS since my early 20s.

The career I had previously was great for me. I was good at it, and it pushed me daily to grow and learn. I was rewarded with promotions, pay and increased responsibility. I liked that I contributed to my community in a way that helped people through complicated requirements and paperwork. I liked being an expert in the field and making suggestions that would allow them to do their projects with the least hassle. That job also required nonstop interaction with people in stressful situations, and it took a lot of energy physically. I would cram my weekend with rest to recharge enough to take on the next week. Sometimes it worked, but more often it didn’t.

When I look at my employment path since the age of 16, I see that I consistently looked at what was available and with each choice made the best next turn. I’ve been in industries with no perceived connection to each other. They include food service, retail, skilled labor, government, business, and office. I’ve worked for myself and for others. I’ve worked at restaurants, a ski resort, a woodshop, a real estate office, an art gallery, in a building and planning permitting office, and a financial office.

A few years ago, someone approached me to assume their job when they retired. I hadn’t even known that person was watching my work! The job had never occurred to me as remotely possible for me, but now I have it and love it. It took a lot of effort to make the transition, but the payoff was huge for my quality of life and the pay cut worth every penny.

In my new position, I still learn and grow every day, I contribute to my community, and I help people. I also have a job with a mix of tasks that allow me to engage with people as well as have focused project work without interruption. The mix helps me accommodate my fatigue issues immensely.

There are no guarantees for anyone for what tomorrow will look like. An accident or unknown health condition can take anyone out of the workforce at any time. I know my condition will progress, and someday I will need to change my employment or even stop working all together before I’m ready to retire. My job now works for me today, and I hope it works for me for some time.

While having MS can make me feel vulnerable with my employment possibilities, I find I’m happier when I don’t prematurely limit myself. When I come from a place of confidence in my abilities, I have hope and feel I can achieve anything I really want.

Career advice I would give myself and others is the same for starting a career as I think it is for winding one down.

Build relationships. Sometimes the people we work with see something in us that would be good for a job we never considered.
Learn whenever possible. Pursue things that interest you even if they don’t seem related to your job at the time. I’ve found in my career that no time spent learning has been wasted even when I changed fields. Everyone brings a different set of skills, knowledge and background to every job. It all adds value even if the fields seem unrelated.
Know your strengths, and build on them. Understand you have a weakness as a consequence of that strength.
Know your weaknesses, and get so good at coping skills or accommodations that they don’t hold you back.
Be open to opportunities that surprise you and haven’t occurred to you.
Do a good job wherever you are on whatever you’re doing.
Be someone that people like working with and want to have around. I’m a firm believer that we’re all replaceable in our employment. If we die tonight, someone else will eventually fill the job. People help and look out for others they like and respect.
Never burn a bridge. People you thought you’d never see again sometimes boomerang into your life again. Forgive them and don’t hold a grudge for poor behavior, but don’t forget it either since they’ve shown you who they are. (I’ve had people treat me poorly given they didn’t respect my position, and later I was their boss or someone they really needed to work with. Seeing them suddenly treat me much better is off-putting.)
Know when a job isn’t right for you anymore. Focus on making the choice that feels right for you each point along the way. If you change later, it won’t be failure. It’ll just be a redirect.
Be wary of making decisions from a place of fear. It’ll stifle your potential and happiness.

I’ll never willingly leave a job without having my next life chapter ready to start. As my body declines with age and illness, being the best me at each point will undoubtedly lead me to see the best next turn.

Relationship Questions I’ll Ask Now That I Live With A Chronic Illness

Posted on August 7, 2017 by MSAA

By Stacie Prada

Here’s the hard thing about relationships when you have a chronic illness. At any given time we’re at a certain place in how we feel about our lives and health, and we hope that those close to us can understand and be there with us. And it doesn’t always happen for our spouses, family members and friends when we need them. They aren’t always able to trust us and be dependable for us when we need them. They aren’t always able to promise or have the ability to be there for us for what we think may be in store for us.

These are good people that have been through tragedies and life hardships before. But sometimes something that isn’t temporary, isn’t going to get any better, and is most likely to get worse is beyond what they can handle.

We don’t sign up for being sick. They don’t either. The difference is they have a choice. And I’m grateful that it became clear before I desperately needed anyone that the relationship I was in wasn’t one that would support me in my probable decline.

I want to be wanted, not an obligation or sacrifice. I see other relationships where people get together after one of them has been diagnosed with MS. I’ve seen how they treat each other, and it’s shown me that it’s possible to have a relationship where hardship exists and it’s not perceived as a burden. The hard things that need to be done are treated as things people do because they love and respect each other.

I don’t want a caretaker. I want a partner. I want someone who will do things for me because they want to, not because they feel obligated. If someone isn’t up for it, the biggest gift they can give is to admit it and bow out.

I cringe when I see articles and comments describing friends, marriages and bodies as not “real.” My marriage was real. And it was good, really good for a while. We were strong and there for each other for a lot of excruciatingly hard times beyond our control. But dealing with what happens and staying around for what might likely come are different things.

For me I realized it wasn’t about whether someone would have me with my chronic illness, the question was whether I wanted them around for my future and helping me with my chronic illness. As I embark on a new relationship someday, I think the questions I’ll want to know the answer to are different and more specific than the first time I married. They extend beyond whether we want children and envision our futures and beliefs align. These are the questions I’ve compiled so far that for me capture relationship traits important for living well with MS:

Can you be gentle and respectful to me when my health inconveniences you?
Can you respect and appreciate me if it gets messy?
Do I like how you treat me when I’m sick or not doing well?
Do you continue to treat me as a partner when taking care of me?
Are you there for me when I need you? Are you accessible? Do you respond to my texts or calls in a timely manner?
Are you there for me because you don’t want to be the bad person or because you want to be with me?
Will you go to doctor appointments with me and share my experience?
Will you do things for me even if they don’t seem like a big deal to you but you know they’re important to me?
How resilient are you? How do you handle stress?
Will how I treat you be enough for you? Will you think being with me is worth the effort it takes?

These questions are reciprocal. Just because I know I have an incurable chronic illness, it doesn’t mean that my partner won’t need the same from me at some point. Nothing is certain, but hopefully building relationships that support unknown futures may be possible.

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