We continue our interview series on overcoming adversity with Amanda from the blog Why We Money. Ok, so the title is a bit corny. But Amanda’s story truly is a living example of what to do when life gives you lemons. She got a bushel full of them.
I got to know Amanda when she was working at Rockstar Finance. I met her at FinCon in Orlando last year. She and her husband, Alan, live in the midwest. She and Alan have two kids, one in the Air Force; the other is a sophomore in high school. The Iowas Hawkey T-shirt gives a clue about where in the Midwest they are, Haha.
Amanda writes her blog from the perspective of finding balance in life. I’ve written a lot about being sure you understand the “why” in what you’re doing in life. Amanda has a similar view. She talks about it in this article. Blogging or any project we undertake that our values do not guide are headed for trouble. I guess that’s why her blog works so well.
Life happens to us all. For some of us, it hits us pretty hard. Amanda is one of those people. In her story, you’ll hear how she’s dealt with the things life has thrown at her. It’s a powerful and inspiring story.
I won’t keep you in suspense any longer. Here’s Amanda.
Special invitation: If you’d like to consider being interviewed for my series on overcoming adversity, please let me know in the comments below or email at [email protected]
When Life Throws You Lemons
Tell us about yourself
I’m a 44-year-old Midwesterner. I love living in Iowa in the spring, summer, and fall. But I loathe winter and scheme my escape each year. One day, not far down the road, we plan to flee a few weeks each year to save my sanity.
I often dream of being a small-time homesteader. But then I wake up. Homesteaders have to do work outside in the winter. I’ve tried some of this homesteading stuff on a small scale – gardening, canning, making the things we need with my own two hands. This feeds my frugal tendencies, and I love it most of the time. But I decided to keep it super small scale and do it when I want to, not because I have to.
I also love volunteering and helping out people in the community. At the same time, I often say “yes” more than I realize and find myself coming and going. So I’m learning to keep it in check while still contributing.
My other loves are writing, hiking, biking, and paddling local rivers. Most wouldn’t guess this, but Iowa has close to 2000 miles of trails so that I can keep occupied right here at home!
Speaking of loves – I’ve been married to the most amazing, understanding, kindhearted guy on earth for 22 years.
Together, we’ve raised two amazing, wise, kind children, ages 16 and 19. As young adults, they’re already making their mark and contributing to the world, doing things I would never have dreamed of at their age. It’s such an awesome thing to witness, and they continually teach me to be a better person.
Tell us a little about your career path
In the traditional sense, I could sum up my career in one word. Short. I got my Masters of Social Work degree right after my BA, worked in public health for 1½ years, and then quit work to stay home with our then 6-month-old son.
But I found ways to earn money over the years while still being flexible and home most of the time.
In the less traditional sense, my work has varied (widely) over the years. I’ve side hustled, worked part-time, volunteered, and freelanced. I’ve done everything from flipping garage sale finds and selling baked goods to subbing at my kids’ school and teaching self-defense classes. More recently, I’ve started another blog and am a freelance writer.
You’ve talked very openly about your struggles with a genetic disorder. Can you share as much as you care to about that?
For about 17 years, I’ve had pain in my right leg. I mostly ignored it. When I developed a painful bump on the back of my calf that concerned me 12 years ago, I had it checked out. At that time, the docs didn’t know what it was. They chalked it up to a fatty deposit and offered to take it out, but I declined.
But the pain never went away. It varied from almost nonexistent to keeping me awake at night. If I bent my knee too much, I was in enough pain that I had to stop and catch my breath. It wasn’t the type of pain you take an aspirin for – it was sharp, shooting, intermittent pain.
In 2016, as I was preparing for one of my black belt tests, I noticed I was no longer able to stretch out my right leg completely. And it was weaker than my left. I vowed to get to the bottom of what I thought was a minor inconvenience.
So in 2017, I went to an orthopedic doctor and got an MRI of my right knee. They discovered several masses in my knee and leg. As the PA explained the MRI results to me, he was visibly nervous and uncertain of what the masses were. They referred me on.
This concerned and shocked me. As I waited for my Mayo clinic appointment, I did what anyone would do. I turned to Google to see what my diagnosis could be (note: I don’t recommend this). Though I came up with a variety of scary diagnoses, none of them fit me correctly. The only one that even came close was Neurofibromatosis (NF), but I didn’t meet all the criteria for that either.
The diagnosis
Long story, somewhat short, Mayo didn’t know for sure what my diagnosis was either. But they did know that I had some form of NF, a genetic disorder that affects the lining of the nerves. What I had was plexiform nerve sheath tumors throughout the inside of my right leg. They guessed I had hundreds of them (of varying sizes).
Though they can become malignant, these types of tumors are typically benign and slow-growing. The recommended treatment was to remove the larger tumors when they caused me enough pain that they interfere with my normal activities.
There are a lot of unknowns – so it’s hard to know how the disorder will progress. But it often stays dormant for years at a time.
So the not so great news was, 1) these things are going to be around for my whole life, 2) I don’t know if the tumors are limited to my leg or widespread (doc says we don’t go looking), 3) it’s a progressive disorder, and 4) I won’t ever completely get rid of the pain.
The good news
The good news was pretty good, though! I didn’t have to go through any extensive, ongoing medical treatment. It wasn’t too likely to affect longevity. And it wasn’t going to have an immediate impact on my quality of life.
I have since had a few bothersome tumors removed. For example, I had one large tumor grow enough to start affecting my calf muscle and gait, so I had that one removed in January of this year.
My struggles? They’re not all that bad.
I have pain almost all the time, but it’s mostly tolerable. I’m used to it, so I can usually ignore it. What makes the more intense pain more bearable is that it’s intermittent – and often doesn’t last more than a few hours. I know that I just need to wait it out. That’s the funny thing about nerve pain, I guess.
I have noticed my physical abilities have become more limited (and more difficult). Some of the things I did five or ten years ago, I can’t do. I’m able to do everything I want to do, though. I can bike and hike and paddle and swim! But I have given up tae kwon do. I’m also aging – so I can’t blame it all on the tumors! 🙂
Dealing with an illness is hard enough. Medical costs can be devastating. How have you managed?
We are very fortunate in this respect. My husband, Alan, has excellent insurance through work. We’ve had a high deductible plan for a few years, but we have ample savings, plus we contribute the max to our Health Savings Account (HSA) each year.
Three years in a row, we’ve met our deductible and out of pocket max ($6000). And we have relied on the HSA money to pay for some medical expenses.
By having a savings account and the HSA account, we always knew we had the resources to pay the out of pocket max. I can’t imagine what we would have done otherwise.
You’re right; dealing with illness is tough. I can’t even fathom having to worry about how to pay the bills without the savings or insurance to rely on eon. That would add another layer of stress and make things so much worse. Having savings in place, for this reason, is an absolute must.
Have you changed your views on finances because of this? If so, how?
Yes, my views on finances have absolutely changed because of this.
We live pretty healthy lifestyles. We’re active, we eat healthily, and we don’t smoke. I used to think that if we kept doing those things, we wouldn’t have to worry so much about future medical expenses.
Discovering I had a genetic disorder at 41 years old completely changed my mind. It wasn’t caused by anything I did or didn’t do to my body. You just never know. No one ever knows.
In all honesty, we thought we were on the path to being FI, well, relatively soon. Before this, I didn’t have a pre-existing condition, and we weren’t concerned about excessive medical expenses. But this changed everything. I now had a progressive, pre-existing condition. Which made the future look more uncertain, financially, and otherwise.
We realized how much we need easy access to quality healthcare – and good health insurance. We also understood that we needed more savings than we initially thought. Our goal is to be able to navigate the unexpected things life will inevitably throw at us – without a nagging worry that one significant medical expense could destroy everything.
How hard has this been on Alan and your kids?
Though I can’t speak for him, it’s probably much harder on Alan than it is on me. It’s affected our planned future together, specifically, in how long he planned to work.
Also, he’s had to handle everything – work, kids, and home – when I’m recovering from surgeries. He’s had to help me to the bathroom, and he’s had to dress me (this sucks for both of us, believe me, it’s frustrating). And he’s sat by my side, unable to help, when I’ve been in tears because of uncontrolled pain (after the last surgery). But he’s been there every step of the way. And I couldn’t be more grateful.
The kids. Hmmm. Well, I think it’s a nagging worry in the back of their minds – especially when I have a tumor removed. But I don’t think it’s been too hard on them. We’re completely transparent and honest about it all. They’re old enough to understand. Plus they can take care of themselves (in fact one is off on his own).
What encouragement would you give to anyone dealing with a major health problem?
When I first heard I had multiple tumors in my leg, I didn’t have any grasp on what the tumors were (and neither did the doctors). I didn’t know what I had or how it would affect my life today and in the future.
I remember thinking, “Oh, it doesn’t just happen to other people.” This might seem like a no brainer to some, but it was one of the first thoughts I had.
“It” happens to you and it happens to me. Even if we don’t think it ever will. “It” could be any number of things Life throws our way.
And honestly, I didn’t want it. For a while, I regretted even going to the doctor in the first place. I thought it would have been better if I’d continued to be unaware of what the problem was and remain in ignorant bliss. Because then, life could go on as “normal.”
Ignorance felt easier
But of course, it’s not. And we all know adversity doesn’t just happen to other people. It happens to all of us. That’s part of being alive and being human. Life’s not all rainbows and roses – for anyone.
After the initial shock, my little pity party for myself, and a bit of education – I changed my mindset. We are all dealt some challenging cards in life. But it’s how we react to and think about these challenges that are more impactful than anything else.
I accepted this as one of my challenges. I recognized that there was nothing I could do to change it. Now I don’t see it as such a significant health issue – most of the time. There are times when it does take up life energy, but most of the time it’s something that’s there, and I deal with.
But it did completely change my life for the better.
I’m fortunate in countless ways. I’m fortunate to have a constant reminder from my body about the value of each moment of my life. I get this reminder every single day! And I don’t want to waste it.
To answer the question about what encouragement I would offer to someone facing a significant health problem? I don’t feel qualified to provide a lot of advice. But I do understand how it feels to get an unexpected diagnosis that can alter the trajectory of your life.
Dealing with the unknown
It’s scary. There’s a ton of unanswered questions and uncertainty. And I would guess almost anyone in similar (or worse) circumstances would feel that way.
Things that helped me were information and education, finding a doctor I could trust, having a support network, and taking a proactive approach to my diagnosis and healthcare. Having a network of friends and family to help you navigate and advocate for you is invaluable.
Also, I had to accept the uncertainty.
Life is full of unknowns. We can plan the heck out of our lives, and it can turn out completely different than we thought it would. Because the truth is, much as we’d like to – we cannot control everything
But that’s the beauty of it, isn’t it?
The only thing I figure any of us can do is take life one day at a time. And on each day, we can look for moments of joy. We don’t have to look far, as it’s found quite easily when we look for it.
Even when we’re facing life’s struggles, joy can be discovered. Simply waking up in the morning to sunshine, that first sip of coffee, the smile on your child’s face, or noticing the way the clouds move through the sky – those moments (and so many more) could all be sources of joy — every single day.
Thank you, Fred, for allowing me to share my story (and for sharing so many other phenomenal stories of adversity). Though I’ve shared openly about my genetic disorder before, I’ve never gone quite this deep. Though it feels vulnerable, I hope maybe someday it could be valuable to someone in similar circumstances. 🙂
Final thoughts
Amanda, thank YOU for sharing your story so openly and honestly. Your humility and love for your family shine through your story. There is much wisdom packed in your story.
I love the adversity series because I get to meet people like Amanda. Their stories inspire me. I hope they encourage you, too. I seriously don’t have any more words to add to Amanda’s incredible story. Instead, I’m going to close with here words of wisdom:
“Life is full of unknowns. We can plan the heck out of our lives, and it can turn out completely different than we thought it would. Because the truth is, much as we’d like to – we cannot control everything
But that’s the beauty of it, isn’t it?
The only thing I figure any of us can do is take life one day at a time. And on each day, we can look for moments of joy. We don’t have to look far, as it’s found quite easily when we look for it.”
Well said, Amanda. And well done!
This post originally appeared on Money with a Purpose.