I’m turning 50 this year, and I’m excited. I have genuinely been looking forward to it for years. No exaggeration.
Tuesday, January 14, 2020
I’m turning 50 this year, and I’m excited. I have genuinely been looking forward to it for years. No exaggeration.
Approaching the half century mark is a big deal. Anyone who lives to age 50 will have experienced many joys and challenges. I think acknowledging the wonderful and terrible things we’ve enjoyed and endured in our lives is a worthwhile assignment. (See my post on My Life List.)
For me, living 50 years is meaningful, because it exceeds the number of years my mom and grandmother ever lived. It’s a life event I sometimes superstitiously wondered whether or not I would ever reach. Add living with Multiple Sclerosis, and turning 50 feels like a major accomplishment!
This year is my year to have 50 experiences of significance in my 50th year. They’ll include bucket list items, accomplishments and celebrations. I’ll share them and mark them with #50at50yrs on social media. If you’re turning 50 literally or in spirit, I invite you to join me in this challenge!
I’m filling my 50th year with travel, music, culture, learning and creating, and I’ll share it somewhere, somehow, at some point, by some form of communication or in-person interaction with everyone I care about in my life. I hope it will enrich my life by making memories, furthering my life goals, and nurturing my relationships and soul. The excitement of planning, experiencing and reflecting on these life moments will be worth cherishing now and reminiscing upon in years to come. Looking for things to celebrate will ensure I find them. (See my post on Finding What I Seek.)
A fun coincidence for me is that Multiple Sclerosis Association of America is also celebrating 50 years in 2020. I’m excited to be a part of their year-long celebration where they’re featuring 50 clients in 50 weeks with #MSAA50. These clients will share why they support MSAA and/or the MS Community. Check it out, and stay tuned for more!
Sunday, December 15, 2019
Family relationships are hard. I look back at decades of immediate and extended family holiday gatherings, and I notice what has changed and what seems like a given. Long-held disconnects or resentments lie beneath the surface and feel ready to erupt at any moment.
Consider as mere mortals, it’s rare to be perfect in these moments. I’ve left family gatherings spending huge amounts of time thinking about what was said, what wasn’t said, and what pushed my buttons. I’ve lectured myself about what I should have done differently and how I shouldn’t let people’s comments or opinions anger me. I’ve been relieved when it’s over and I won’t need to deal with it again until the next holiday.
Dropping it until the next time I see them again prevents me from having a different experience next time.
When I worked in a woodshop and made mistakes, I’d default to reminding myself: “Being good at a craft isn’t about doing everything perfectly; it’s about knowing how to fix mistakes.”
I’ve taken to applying this concept to relationships. While I wouldn’t call an interaction a mistake, I will acknowledge plenty of times where I wish I’d reacted differently in a situation. Instead of a mistake, I’ll call it letting my frustrations show. While those moments are uncomfortable and possibly embarrassing, they’re consistently opportunities to open a dialogue and nurture relationships.
When asked how a recent holiday gathering went, I joked that no one killed each other and we all still love each other. While tears were shed and shocking comments were made, I was blown away that in each moment someone acted with grace and stayed in the conversation. It’s that grace that heartened me and inspired me to follow up with people after the event. Some were earnest conversations while others where quick comments during a hug. “I’m proud of you.” “Thank you for being kind when that was said to you.” “I love you.”
While I’m tempted to write a note instead of talking to them, I see a huge benefit to saying these things instead of sending a one-way written note. Saying it to them gives them the chance to respond without a lot of extra effort. It invites more reflection and conversation without demanding it.
I can acknowledge what hurts while knowing with certainty that we’re all doing our best in each moment. I don’t need to behave perfectly, and neither does anyone else. If someone shows frustration and behaves poorly, I can listen and know they must need to say it. I can lead with grace by letting them say all they need to say and showing compassion for their pain. Whether I agree or not isn’t the point. I’m choosing to keep this relationship, and helping people have their cathartic moments has helped us move on from some of those past hurts.
Yes, I joked that we didn’t kill each other the last time we were together. Yet I am extremely proud of how far we’ve all come in how we interact. We spend more time listening and showing compassion for each other. We’re having the hard conversations that need to happen if we want to nurture our relationships. We’ve been through a lot individually and collectively, and I’m grateful we keep coming back.
Being good at relationships isn’t about being perfect. It’s about nurturing them with sincerity and kindness when they’re not as good as we’d like them to be and when they’re already great.
Wednesday, November 13, 2019
|Warnings on the door to the MRI equipment room|
It’s the morning of my MRI scan and neurologist appointments. Leading up to them, I’ve anticipated needing to seek support and to allow myself time to process whatever I learn today. I tell myself that test results don’t change how I’m doing. They just give me more information to consider.
The rub is that I anticipate being sad with any possibility today. I feel worse than I did earlier this year. Eight months ago, I learned I’d had a couple of new lesions in the past couple years that I attribute to the process of getting divorced. Side note: A saying I found on a greeting card is absolutely true for me; “Getting divorced sucks. Being divorced doesn’t.” I’ll add to the end, “…at all.” For me being divorced has been a lifesaver for my mental and physical health.
Back to today. I hope to learn if either my MS is progressing or it’s stayed the same while I feel worse. If there’s new activity, I might be able to console myself with the hope that the pain I live with may subside with treatment and changes to my medication. If there isn’t recent or current activity, I’m disheartened to make sense of why I have more MS symptoms and feel so bad.
To cope with feeling sad and afraid, I’m approaching today with gratitude. I feel the pull of wanting to mentally crawl back into my own head and armor myself from the outside world. Focusing solely on myself is an attractive option. Yet I’ve found over the years that checking out from the world and my relationships is the worst option for me. Pushing myself to interact with people while also writing and facing my fears head-on works best for me.
Gratitude advice often includes thinking of three things each day that you’re grateful for. I think it’s helpful, but I think it misses what helps me most. It’s most nurturing to me to tell someone I’m grateful for something they’ve contributed to my life.
Often in my life, people have shown appreciation for my work when I’m leaving a job or after I’ve left. It is sad to me that I really could have benefited from the encouragement more while I was doing the work than years later. I’m a firm believer in having all my relationships in a place that I’m okay with if one of us isn’t around tomorrow. That means telling people I appreciate them in each interaction rather than making a grand gesture at the end of a life chapter.
Today I started with thanking the imaging center receptionist for working on Veteran’s Day when other people including myself have the day off from work. It was helpful for me to be able to make appointments today that didn’t require me to change my work schedule or shuffle other obligations. It may or may not have been a big deal for her to work today, but I truly appreciate it.
Alonzo the MRI Technician greeted me with a warm smile and hearty laughing comment, “Hi, Stacie! I’m still here, they haven’t fired me yet!” He remembered our conversation from the last time he did my scan. I did too, and it was relaxing and felt good to know he enjoyed our banter and was treating me as a person and not just a patient.
He passed me off to Kyle who was terrific. Kyle commented I was a seasoned pro at getting MRIs, and he gave me options that made the scan go quicker while he still professionally addressed all the required steps. It was nice that he offered to either comment on what to expect for each portion of the scan or skip them to make the scan go quicker while still being available at any point. Omitting the starts and stops let him flow from one scan to the next, and I was out of the MRI tube in half an hour. As he disconnected my IV, I commented to Kyle that he and everyone at the facility are excellent at setting up IVs. Lots of times, medical providers have difficulty finding my veins. It can take a lot of time and frustration drawing blood or inserting an IV, but Kyle did it with ease on the first try.
As he helped me offload from the platform and wrapped up our session, I told him it seemed like coincidence or irony that the music he provided to my headphones included Red Hot Chili Pepper’s song, “Scar Tissue,” while he scanned my brain for MS lesions. MS lesions are essentially scar tissue on nerves in the brain and spinal cord. He rocked his head back to laugh, and he said he thought it was irony. I believe it’s technically coincidence, but I think a word that better describes it with the weight and feeling I experienced is happenstance. I like the song, and it tickled me to connect the name of the song to my unrelated situation.
I appreciate each interaction today, and I feel like I accomplished letting most of them know. Intentionally planning to do this helps me see outside of myself and my fears.
The receptionists, technicians, nurses and neurologists all make my health journey more pleasant. They make a fact of my life less depressing, and they help me keep going. For them and all of my friends, coworkers and family, I’m beyond grateful. Telling them how much I appreciate them is a small thing I can do, yet it is vital for shaping my attitude and outlook in life. It helps me put my mind in a place that recognizes how much larger life is than my personal circumstances and how much other people contribute to my well-being. I can rest easy that I won’t have unfinished business if we never see each other again. I know I’ve done what I can to make life more pleasant for myself and the people I’ve seen that day.
My last appointment this day is with my neurologist, and it goes better than I anticipated. The scans show that a couple of the white spots they saw in the last couple years aren’t there this time. I didn’t anticipate this result, but it still falls under the category of needing to reconcile the data with how I feel. My neurologist helps me navigate the issues that are causing me grief. He not only helps me create a detailed and comprehensive plan to try to reduce the problems I’m having, he cheers me up and gives me encouragement.
This day that I’d approached with apprehension was pleasant. Uncertainty pervaded my thoughts, yet focusing beyond myself and verbally expressing gratitude to people throughout the day settled me. On the drive home, I can feel my body start to relax. It’s been a good day, and I have hope.
Sunday, October 20, 2019
In true keeping with not quickly remembering the lessons I’ve already learned, it took me a few months of building frustration before seeing a situation I’m experiencing as something I could approach differently.
I volunteer for our local self-help group, and increasing work and personal health demands are making it harder for me to continue doing everything I’ve done for the past six years. I’d asked for volunteers to help. Some stepped forward and I appreciated their help, but still I felt responsible for more than I can continue.
I was getting frustrated, and resentment was building. I was getting grumpy and feeling like the others in the group were expecting too much of me. I was stuck in a mindset believing the only options were for others to do what needs to be done or for me to leave the group entirely.
I told close friends about my frustration. I detailed how I know what I do is appreciated, but I also feel people are putting these responsibilities on me because I look fine and am in better health than they are. Often, I’ve had people ask me what my association is with Multiple Sclerosis. I tell them that I have MS and I’m a member of the group. More than once, they’ve forgotten and asked me again a few months later. My takeaway from the conversations was that they don’t see me as a peer, they see me as providing charity.
It was on the short drive from work to our monthly meeting where I realized I don’t need to solve the entire problem. I only need to identify what I’m willing to do and let everyone know. The rest I can let go without guilt. If someone wants more, I’m not required to provide it.
I get a lot out of the group. I’m able to ask specific questions about their experiences and how they’ve handled issues I’m facing or anticipate for my future. Participating in the group is worth it to me, and it’s worth my time. I can continue meeting coordination, the monthly letter, periodic leader training sessions and phone calls with new members, because I’m able to do them on my timeline – at night, on a weekend or when I have the energy. Attending meetings is getting tougher due to work conflicts, and organizing speakers and special events is just too much. Feeling like I’m failing the group causes me stress.
I wanted someone to be a co-leader. I realized on the drive that I hadn’t been specific about what I needed, and I wasn’t differentiating between what I am willing to do, what I won’t do anymore, and what will not be done if no one else wants to take it on. A need for a group cannot be a demand of me specifically.
When I was 17 and my family was in a car accident, it created a belief in me that everyone else was allowed to fall apart and I wasn’t. While most of my family was more injured than I was and needed more care, I stepped up to take care of things. I watched adults who I thought would come to my aid break down and leave me to do things that had to be done. I resented and envied them. What would it feel like to not worry about everyone else and only take care of my needs?
I resented feeling like I wasn’t allowed to fall apart. I’d been labeled as strong, and I took it to heart. I thought because I was able to put other people’s needs before mine that I was required to do so.
It’s been only in the last few years that I realized that I have a choice and I’ve always had a choice. I am not required to be strong, I’m choosing to be strong. I’m not required to take care of everything that needs to be done. I can choose what I’ll do and let certain things falter. Whether I knew it or not, I was choosing to be strong because I wasn’t okay with what I thought the consequences would be.
During that drive to the meeting, I remembered this lesson. I considered that it could apply to this problem I faced, and I immediately knew it was right. I needed to focus on what is in my best interest to continue and let the rest go. It’s a big shift in my perspective to remember that I don’t need to carry burdens alone.
I’m working on stepping back once in a while to assess stressful issues more analytically.
1. What is making it hard for me?
2. What do I no longer feel is in my best interest to continue?
3. What makes me feel resentful?
4. Why do I think it needs to be done?
5. What are my resources?
6. How can I best take care of my needs?
7. How can I best invite help but not demand it?
8. Who else might care about it, and how might they be able to help?
9. Am I willing to accept help if it is done differently than I did it?
10. Am I willing to live with the consequences if it doesn’t get done?
The difference between feeling forced to do things and choosing to do them is huge for me. As my health changes, I may be able to do more or less than I’ve done before. If I need to change what people expect from me, I can let them know, give options and let it go. If someone is angry or disappointed, I can let them be. If I weigh the options and decide to do something, it’s liberating to know for certain that I chose it.
Tuesday, September 10, 2019
I’ve started thinking it should be the standard to have our time with Multiple Sclerosis described with two numbers. It would be similar to blood pressure readings where two numbers have meaning on their own but give a fuller picture of a person’s health when described together. Our time living with MS could be described as the number of years since we were diagnosed over the number of years we estimate we’ve been living with MS.
For me, I was diagnosed 11 years ago, and I can estimate my first exacerbation was likely 27 years ago. This puts my MS number as 11 over 27. Short hand, it would be written 11/27 MS yrs.
Often when meeting new people, we’re asked how long we’ve had MS. Those who are more informed tend to ask how long since we were diagnosed. Given many of us with MS have lived with it a long time before we know it and are diagnosed, those years prior to diagnosis take a lot of words and time to explain. At times it feels like I’m slowing the conversation and forcing someone to listen to a long explanation. It doesn’t help that the words diagnosis and exacerbation have a lot of syllables and are a mouthful to say in any conversation.
Those 16 years between what I now realize was an exacerbation and the year I was diagnosed were filled with odd sensations, loss of control of hands and feet, bladder and bowel issues, and a ridiculous amount of fatigue that kept me exhausted for years. All those years, I thought I was healthy and didn’t know they indicated something seriously wrong with my health. I thought it might just be normal, because symptoms were sporadic or nebulous. I had no way of knowing that my exhaustion wasn’t solely because I was fighting off a cold or stressed out.
In those 16 years living with MS but not knowing I was, I became an expert on adapting to change without realizing I was adapting to living life with a chronic illness.
For my fatigue, I put a lot of effort into outsmarting my energy level so that I could get more done with less effort. I’d organize every aspect of my life. My schedule, my professional obligations, my home, my finances and holidays all had lists and systems in place to ensure I kept up with everything I wanted done.
For dropping things or tripping, I could only conclude that I must have been distracted. I’d vow to pay more attention. I’d plan to grasp things with intention and lift my feet purposefully.
Bladder and bowel issues were addressed with diet and research. I’d follow the recommendations available at the library, online and suggested by friends to see if any of them worked. Sometimes they helped and sometimes they didn’t. Eventually the exacerbation would subside, and I’d attribute the problems to a disruption in my routine, eating differently or not getting enough fiber. Looking back, it’s a bit crazy I didn’t realize it wasn’t normal, but it would always improve after a while. How could I know when I don’t have another body exactly like mine to compare it to?
I, along with many others with MS, unknowingly adapted to MS symptoms just to keep on keeping on. The relief of having a diagnosis allowed me to add one more crucial factor to consider when making decisions. The benefit and the burden of this knowledge is an ongoing fact of MS living.
Pre-diagnosis, I might stay home all weekend to rest and feel like I was deficient. Post-diagnosis, I not only had a valid reason to rest but a compulsion to rest for fear of causing an exacerbation. Thankfully, I finally had something that my friends, family and I knew about me that might offset the judgments that I was lazy, didn’t care or was making an excuse to avoid something. Those closest to me looked out for me and pressured me to do less. The expectations for me and from myself now had a new lense through which my performance was measured. It is both liberating and confining.
Post-diagnosis, my challenge has been to find a sweet spot of balance between activity and rest. Perspective, healthful habits, continual learning and adapting helps. At time I can do my best, and I still won’t be able to adapt enough for the change needed for the circumstances. It doesn’t mean I’m unable to deal with change. It just means I won’t be perfect in every situation. Notice it, acknowledge it, repair any damage to others I may have caused, learn from it, and move on. I can’t do better than my best. That’s enough.
For my suggestions and perspective on organization, see: Getting Organized and Staying Organized: It’s a Lifesaver When Living with a Chronic Illness
Tuesday, September 3, 2019
Completely in keeping with my desire to say yes to life and try new things, I said yes when Rosemary of Brazen Living asked me to give my perspective on trying new things. She sought me out after reading my article, Trying New Things: The Rewards Usually Outweigh the Risk. She put together a roundup of viewpoints and advice on pushing boundaries and trying new things.
Check out Rosemary's Brazen Living roundup here, and check out my original post about trapeze here. Enjoy life, all!
Thursday, August 29, 2019
First, I’ll say it ended okay for now. Hours later, I’m still feeling vulnerable and sad. Sad at my situation and sad for how much worse it is for many others.
Step back to this morning at work. I choked back silent sobs just wanting to get it together. I’m in my office, standing at my desk and wiping away tears. I’ve just gotten off the phone with my super exclusive specialty pharmacy and copay assistance representative for my disease modifying medication. I say super exclusive because this is the only pharmacy I’m allowed to use for this medication. This is the most important medication I take that holds hope for slowing my Multiple Sclerosis disease progression. It doesn’t cure anything, but it may keep my immune system from attacking my central nervous system as frequently as it would without the medication.
My health care insurance changed the pharmacy I need to use. That’s not the problem I’m struggling with right now. Before it changed, the previous pharmacy phone rep told me that my copay assistance was denied because I’d used up all the funds for the year.
This morning I was told that after my insurance pays the amount covered by my policy, my one-month supply of medication is $2,317. Copay assistance provided by the manufacturer of the medication caps at $12,000 per year. The math doesn’t work out in my favor. I calculated that copay assistance will cover 4.8 months. I need to take this every month, and that’s not even going to cover me for half a year. The rep keeps saying I need to be aware of this when I make an order because I’ll have out of pocket to pay.
I know I’ll fare better if I stay calm and wait for final answers before getting upset. My body doesn’t comply, and while I’m polite to the reps, I’m barely getting the words out – “Thank you for your help. What can I do?”
The co-pay assistance rep says she’ll make some calls and find out the balance of my co-pay assistance fund. She promises to call me back by the end of the day. I thank her and hang up while choking back immanent sobbing.
This sucks. I hate that I have to deal with this. I hate that my health is frustrating and I live in a nation where even with terrific insurance coverage I feel like a burden and at risk of needing to do without prescribed health care.
My work day continues, and I talk to a few people to continue projects and discuss next steps completely unrelated to the experience I just had. I’m still wiping away a tear during one conversation and tell them, “I’m sorry, I have something unrelated I’m dealing with.” I continue to discuss the project as if I’m okay.
Within the hour the copay assistance rep calls me back and says I still have over $9,000 in my copay assistance fund. I have no answer for why I was told that the fund was exhausted. I have no promises that it won’t be a $2,317 debit to that account each month. I’m only assured that I have enough to provide my medication through the end of the calendar year. For now I’m fine.
If I’m still taking this medication next January, I’ll need to ask each month if they’ve completed the “two-step process.” She keeps saying this as if I know what that is. I finally interrupt and ask what is involved in the two-step process for ordering. She explains it’s where the pharmacy determines the amount covered by my insurance, schedules a delivery date and then bills my copay assistance fund. Only then will they know if there is an out of pocket amount I owe and how much it is.
I asked her if the pharmacy would call me back after knowing the amount due and let me know if my personal credit card is going to be charged beyond what I’m ready for. She says yes. That’s what I have to go on right now. Best case, it keeps getting covered, magically the $2,317 per month is reduced after the copay assistance program pays, and I can keep using this medication next year. Worst case, next year I’ll need to pay $15,805 out of pocket above and beyond what I pay for my health insurance. If worst case comes to pass, I’ll more likely work with my neurologist to see if there’s another medication I can use that is covered or has a better copay assistance program.
The details and drama of dealing with this is exhausting and stressful, and I’m sick of it. I share this not to ask for pity or sympathy, but to spread awareness about how life is when living with an incurable disease not of my making. I wish I had the energy to advocate loudly for pharmaceutical medication reform. But it’s just too big and too much for me to do on top of taking care of my health, working full time and trying to live well. I wish I could distract myself with anger, but I’m too tired or not distanced enough to be angry. I hope to be able to do something productive with this. I hope people sicker and less able to navigate bureaucracy can get what they need to be able to obtain the medications they need without spending down their life savings or declaring bankruptcy. Even then, I understand our system isn’t likely to provide all they need.
We need a better system. We need to care for our weakest and most vulnerable. I have insurance, aptitude and patience to deal with this, and it breaks me at times.