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Patient Perspectives #1: Financial Independence and Multiple Sclerosis

By Jimmy Turner, MD
The Physician Philosopher

Physician Disability Insurance

This is a guest post by Kate.  Kate is a nurse practitioner, financial independence junkie, travel fanatic, and homeschool mom. She blogs at On Our Way World.  We have no financial relationship at this time.  I hope to introduce this is as the first of many “Patient Perspectives” presented on this web site.  If you are interested in writing a Patient Perspective post geared at helping medical professionals remember why they chose the path that they did and how financial independence is important, shoot me an email. Take it away, Kate!

The Beginning

It started with a funny feeling… somewhere between an itch and an ouch – not quite right, but I couldn’t really define what was “wrong.”

You know the patient that shows up in your office and says “hey doc – something’s not right, but I couldn’t tell you what it is”? That was me.

My eye was – sore? Tired? I couldn’t tell. But surely, nothing was really wrong, or I would have lost vision – right?

Had I lost vision? I realized I wasn’t totally sure. I’ve never been so thankful to be the lone car on the freeway as I was when I decided to cover my “good” eye while driving to see if I had – in fact – lost any vision. The fact was, I could barely see out of that eye.

I started my shift at the hospital and went about my day because, as a staff nurse, that’s what we do. Finding someone to cover your shift when you’ve been disemboweled, let alone when your eye is a little sore, is practically impossible.

I ran into one of the hospitalists and pulled her aside – “I seem to be OK, for the most part, only I can’t see out of this eye. Can I just ignore it for a bit?”

Of course, the answer was a resounding “no”. I knew it, but I was hoping someone else would tell me to just ignore it and let it go away.

The Diagnosis

Our hospital provided access to UpToDate, which was a blessing and a curse on that day – although we all poke (gentle) fun at patients who plug their symptoms into WebMD and come to the office, diagnosis in hand… what I did was the same thing, on a much more expensive platform.

“Eye pain”

“Loss of vision”

Young adult, female”

In looking at the evidence, it was obvious pretty quickly that there was only one thing it could be – optic neuritis.

And that could really only mean one thing – multiple sclerosis.

Another Day at Work?

Of course, like any good nurse, I had to get sick on a Friday afternoon. I made an appointment at the only optometrist who could see me. I went in, and told him what I thought I had. He confirmed what he could – near complete vision loss in my right eye. But – he couldn’t tell me what it meant.

I went back to work after because – hey, I’m a nurse. It’s what we do. I just happened to run into the on-call neurologist making his rounds. He wasn’t a doc I was particularly close to – a good guy, as bland as cardboard-flavored ice cream, but a solid neurologist. He also happened to have a special interest in MS.

I pulled him aside (because who doesn’t love a Friday afternoon curbside consult, amiright?) and told him what I knew so far. A quick exam in the locker room confirmed a little more – an afferent pupillary defect on the right, consistent with optic neuritis. I’d need an MRI, which even with my considerable charm I could not get scheduled until Monday.

The weekend was hell. I spent my 12 hour shifts alternating between covering my eye, hoping my vision would have returned and it would all be a bad dream, and crying in the staff room.
I took a quick break from my shift on Monday morning to get the MRI. Because this was back in the Wild West days of electronic medical records, I was able to log into my own chart a little bit later and check on my results.

“Scattered lesions, consistent with multiple sclerosis. Cannot rule out malignancy”

(A word to radiologists here… can we just once, please, rule out malignancy?!)

The rest of the day is a blur. Honestly, the next 6 months were a blur.

The next step

I had just graduated nurse practitioner school. None of this was supposed to be happening. I’d gotten my dream job as a nurse practitioner with the hospitalist service, and now… this.

I got a round of steroids to treat the optic neuritis. I started a new (and incredibly stressful) job. To pour salt in the wound, I spent half my time covering the acute inpatient rehab unit, where books on “how to deal with function loss in MS” taunted me like horrible little reminders of what my lot in life was certain to be.

I don’t think there was one specific thing that pulled me out of it – time went by, and I could still walk. I wasn’t wheelchair bound, and in fact, after the optic neuritis I’ve never had another symptom.

The lesions are there, and changed enough over time to qualify what I have as “true” multiple sclerosis (rather than the earlier stage and less dramatic sounding “clinically isolated syndrome”). I started medication for it shortly after diagnosis. I get MRIs yearly (every 2 years, now, after a little wheeling and dealing with my neurologist).

Discovering Financial Independence

We didn’t discover the concept of FIRE until after my diagnosis, and I’m not sure what my perspective on it would have been had we discovered it before my diagnosis.

What I do know is this – Financial Independence is important. So is enjoying the path to get there. We could save more aggressively and reach FI earlier. But I also might not be able to walk in 5 years.

I think my outlook is bright – the first 5 years is highly predictive in MS – and my 5 years have been stellar. As good as they can be when you have a lesion-y brain. But that could change. So I’m going to take that vacation now, and if I can still do it in 5 years, or 10, I’m going to do it again. I’m going to work a little less, and hustle a little less, and chase my kids around the park a little more – because in 5 years, maybe I’ll still be able to – but maybe I won’t.

It’s Not All About FIRE

Reaching FIRE and not having anything to show for it when you get there – no health, no family connections, no memories – is not, in my opinion, worth it. I still hustle, and I still work long hours- but I try to balance that with time spent making memories with my family, and enjoying the health I have now, while I still have it. I hope it lasts well into the future, but if it doesn’t – I want to do everything I can now, while I still can.

I’ve also worked hard to craft a career that can be done from anywhere, location-wise, so that we can have the freedom to adventure now. We’ve chosen to homeschool our kids for a number of reasons, but the freedom to spend time together, travel, and have adventures, are chief among them.

I’ve spread my eggs in a few baskets so that if the time comes that I am limited in some way, I can still provide for the family.

I still love being a nurse practitioner, and I hope to do it for the foreseeable future; even when we reach financial independence I hope to continue working – but having a fallback option is a good idea for anyone, particularly someone in a position like mine.

Take Home

The fact is, I’m lucky to have had this glimpse into the future now, rather than discovering it on my deathbed as so many have. We only get one life, and there are no guarantees as to how long or healthy that life will be. So while we all chase FIRE, a concept I still believe in deeply, let’s also remember to enjoy the journey to get there.
[TPP:  The second I saw this post from Kate, I fell in love with it.  Not only can Kate write really well – and in an engaging way – but she hammers home some of my favorite points. 1) You have to live a little now and enjoy the moment while we also set our future selves up for financial success, 2) we are all mortal and need to appreciate the important things in life, and 3) having a plan for financial independence can make difficult times, which are hard to predict, easier to handle.]
What do you guys think?  How has financial independence changed your journey?  Have you had any monkey wrenches thrown in the gears?  How did you deal with it? Leave a comment below.
TPP

10 Comments

  1. Xrayvsn

    Thank you Kate for sharing a very personal story that I know must have been awful to experience firsthand. TPP is correct, you really a gifted writer and you hammer home great points of how everyone should approach life as you never know what we have left in us.

    I do hope that the first 5 years do indeed indicate that you have a great prognosis for the rest of your life.

    Reply
  2. Kate

    Thanks Xrayvsn! It was a pretty rough 6-12 months but I rarely think about it anymore… and hopefully I can continue not thinking about it well into the future!
    ~Kate

    Reply
  3. August

    Really enjoyed that.
    I’m just leaving the healthcare field as an RN. Nurses are a tough group of folks and I wish you the very best. Happy FI.

    Thanks

    Reply
    • ThePhysicianPhilosopher

      Thanks, August.

      My sister is going into nursing just now after a successful career in another field. She is one tough cookie, though. Just like many of the other nurses I know.

      Reply
  4. Living Life Loving Us

    Incredible story, kate! It sounds like you are doing great all things considered and using your diagnosis as a blessing in disguise to live a full life doing things you love. Thank you for sharing.

    Reply
  5. Angela @ Tread Lightly Retire Early

    What a perspective to give you a sense of what is really important in life. Not something I would ever wish on anyone, but I’m glad you’ve been able to find the silver lining of appreciating the good time while you have it, because that’s really all any of us have.

    Reply
  6. Quynh/Smart Money and Travel

    Great story, Kate. I agree that one shouldn’t solely focus on reaching FIRE and neglecting everything else. My husband and I had a few heated discussions regarding when to reach FIRE. Initially, he wanted to work and save as much as possible. I, on the other hand, see how my dad’s health is declining because he worked so hard his entire life, want to also slow down and smell the roses. We’ve reached the consensus to live frugally but also making time to go on vacations.

    Reply
    • ThePhysicianPhilosopher

      Kate’s story really is incredible. It’s so important to strike a balance between the future and now. We have to live a little, but also save enough so that we can live more later.

      Thanks for stopping by!

      Reply
  7. Donna Morris

    After 20 years of MS treated from 2000 to 2006 with Rebif(efficient to that year) and then Avonex(not efficient to calm down my lesions’ number increase) i found this website health herbs clinic . just 3 months ago, and their current natural health tech to help curb/manage it. Decided to give it a try and it has made a tremendous difference for me I had improved walking balance, muscle strength and improved vision, always thankful for nature that helps in managing these terrible diseases. Thank you for giving those of us with Multiple sclerosis a new hope. Google healthherbsclinic.com

    Reply

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