Reclaiming myself

It’s been two years since I ended my three-month stint on the then-new CF drug targeted at my particular mutation(s). If you recall, I had a lot of side effects and medication interactions that forced me to call a cease fire.

I lost a lot of lung function during that time, and have not yet been able to get back to where I was, prior to the medication.

Now, it could have been coincidence. I could still have had the series of CF lung exacerbations and hospitalizations had I not taken the medication. I might still have ended up needing Oxygen at home after one particular infection flare-up, and still need it when I am sick. I might still have lost a lot of strength during those hospitalizations. And certainly, it had nothing to do with having Sepsis a year ago.

All of that, plus my existing CF complications, have driven my overall strength, stamina and unfortunately, my willpower, to an all-time low.

I have decided, however, that I am not giving in. Strength and energy have lost in this war. Now it’s time to go to battle to regain what I have lost. It’s time to reclaim myself.

I was never an athelete, but I had strong lower body muscles from dancing in high school, going through ACL reconstrtion rehabilitation, and doing Pilates for the past 20 years. I very suddenly lost my calves of steel during a September 2016 hospitalization, and my overall muscle tone disappeared.

So I have decided the one thing I can do that can help support my body and improve my energy and strength is a solid commitment to fitness. I used to be a gym rat, but too-frequent infections, symptoms – pain and nausea – from chronic pancreatitis, and side effects from several medications, have collectively rendered my gym membership useless.

So I’m starting from scratch.

It all starts with walking. I need to build up my cardiovascular system to get help my lungs and strengthen my legs. I will then return to light-to-moderate weight training to increase my overall muscle mass and give me that strength boost hat I currently lack. And then move onto hiking outside. Maybe on the flats, but getting my groove on – outside in the Vitamin D and fresh air – will be amazing.

Yeah, I’m sure I’ve written about this stuff before, but I feel that so many of my systems can benefit from this new commitment. I have to do this. So I got out my whiteboard and started writing down all the possible benefits.

  • Better moods. Helping my depression and anxiety.
  • Strength to carry me when my lungs are working harder when sick.
  • Conditioning. Keeping my heart pumping efficiently.
  • Lung clearance. Nothing like a good cough to get that junk out!
  • Digestive support. Keeping things moving.
  • Energy to live. Housework, socializing, driving. Holidays.
  • Confidence. I’m tired of being weak and on the sidelines, feeling unworthy to contribute.

I am going public with my plan for accountability.

I may not move mountains, but at least I will be able to climb a few hills. And to me, right now, that can make all the difference in the world.


My Gifts to my Self

Birthdays. Holidays. They seem to highlight both what is great in our lives and what isn’t so great.

My birthday is always right around Thanksgiving. This year, it was 2 days later. Continue reading

10 Things You Lose When you Retire Early for Medical Reasons (and 5 Things you Gain)


We live in a country…heck, world…where our personal identities are closely tied with “what we do”.

Do you work?

Where do you work?

For most adults, the common answer is either “I work at…” or “I am an…”. The only acceptable alternative answer is “I am a stay-at-home mom/dad.”  Try answering that question with “I am disabled” or “I had to retire early”, and people feel awkward and don’t know what else to say.

In the U.S., personal identity is closely attached to your job or career. People make assumptions about where you stand in your industry (entry level, mid level, VP?), your place in the economy, your social standing, where you live, and how you “stack up” in many different ways.

What would you say to someone who answered the question “What do you do?” with, “I retired at 30 for health reasons and am on medical disability”?

It’s not socially acceptable to begin an introduction with something so depressing/sad/pitiful, is it? And talking about receiving government assistance – it’s a politically charged topic. In addition, saying that you’re medically disabled comes with its own lot of negative assumptions. All awkwardness and assumptions aside, however, that is my story.

So here goes.

My name is Toni. I retired at the age of 30 for health reasons. I do not have a job. I do not have children. I am home all day, every day. 

Work for Pay is a Necessity in Our Society

We need jobs to acquire the means for food, shelter and security. In addition to helping provide for life’s necessities, a job pays for the costs of living – electricity, clothing, transportation (a car, the train, a bus), and for many, access to health insurance.

Blue collar. White collar. Employee. Manager. Worker. Boss. Tell someone what you do for work and like it or not, you’re assigned a specific role in society, a rung on the ladder.

Who Am I?

I grew up in a strict Catholic household with three siblings, where it was expected we earn good grades, go to college, and find a career. I did just that, despite my health frequently interrupting my progress. I graduated high school on time, took a few extra years to finish college for health and financial reasons, but I did it, with honors. I stumbled into the work force with a stint in Reporting, and then worked in Advertising and Technology.

I worked hard. I worked late. I showed up early and usually ate lunch at my desk. I was a dependable worker. But then I started getting sicker, and more frequently.

I was getting too sick too often and for too long to keep doing my job well. Starting right on New Year’s Day one year, I had back-to-back hospitalizations and had to twice take 6 weeks of medical leave (short term disability) over a 4-month period. I tried bringing down my work hours from 40+ (in reality, I was working 60 hours a week) to 30 hours (three 10-hour days). I worked from home, and even worked from my hospital bed, dialing into the internet though my laptop’s modem through my hospital room’s telephone line.

It could not have happened at a crazier time in our lives.

We had  just purchased our first home. A few weeks after tendering my resignation, my husband’s company closed their local office and laid off most of the employees. Thankfully, my husband found a job within 2 weeks, and was back in the corporate world, where he earned a paycheck to cover living expenses and provided a source for health insurance. Employment returned to him both a sense of purpose and opportunity for growth.

I, however, was now struggling. Having to retire at 30 blew my world apart. Every facet of my life changed in some way.

  1. Money
    The biggest reason we work is to earn a salary. Paychecks allow us to put food in our bellies, have a safe place to rest our heads, get the things that we need to live, and if we’re lucky, provide a means for some of the conveniences and extras in life. Our income was slashed in half. For most families, that means change in every area of life and lifestyle. Two things that became much more important were household/personal budgeting, and maintaining positive personal credit. Often, a drastic income decrrase can send families into a financial tail-spin, forcing a change in residence, living more frugally, and cutting out extras.
  2. Self Value
    According to a 2014 Gallup poll, 55% of Americans “gain a sense of identity” through their jobs. Anecdotally, I’d wager that the percentage is much higher. Many of us value ourselves by *what* we can provide our family. A home. Food. Transportation. Education. Clothing. For quite a long time, I felt like all I brought to my household was cost (for medical bills and time) and inconvenience.
  3. Purpose
    Head of Household. Stay-at-home-Mom/Dad. What gets you out of bed in the morning? If you’re not working or not raising kids, people ask “What do you do all day?”. There really isn’t a place in polite conversation for me to mention taking dozens of pills, spending hours trying to clear my lungs of mucus, laying down with a heating pad on my belly to deal with pain. For years, I tried to fill my days with different hobbies, such as trying to build a home jewelry business, and reviving old interests such as acting. I became a cliché.
  4. Social Status
    Boss/Employee. As it did with Serfs and Lords hundreds of years ago, one’s job often shapes one’s “place” in society. I wasn’t a mommy. I wasn’t a valued employee. I didn’t have any clout (except perhaps only over my cats). And I felt like a lousy wife because I wasn’t well enough to maintain a sparkling clean home, put a hot meal on the table every evening, or posess enough to greet my husband each night with a smile, a dress and pearls on.
  5. Social life  
    Friendships form as a result of frequent, random interactions. That’s why it’s easier to make friends at school, kids’ events, neighborhoods/apartment buildings, and especially, at work. Where else do you spend 8-10 hours a day, 5 days a week? I had several groups of friends, but lost each one of them – some quickly and some gradually.In the past, we either trekked  into the city to socialize, but now that I wasn’t working, people didn’t want to take a train 40 minutes into the suburbs to come to see me. I had much less energy, didn’t have the stamina to go out to dinner/dancing and come home at 2am, and I stopped drinking socially because of the potential interactions with my many medications. Driving also become very difficult. As one ex-friend said, I had “become a bore”.
  6. Validation
    How am I doing? Am I making any progress? Am I learning anything new? When you have a chronic illness, you devote a lot of time and energy to managing your health. Aside from getting “good scores” on medical tests or the occasional “good job” from your doctor, there’s no structure for evaluating your daily performance. There’s nobody to tell you where you need to improve, nor is there anyone to tell you how to get to the next phase in life.
  7. Challenges
    Boredom is as dangerous as depression. Lack of structure, purpose, a landscape that doesn’t change much gets old pretty quickly. I have had to search for things to make me feel like I’m productive outside my health management. I have no clear path set before me as one does with a career. The biggest challenge now is how to stay as healthy as possible, but who wants to hear about that? It’s much more interesting to talk about projects and accomplishments and promotions.
  8. Opportunities for Growth
    I have had to reframe how I see everything in life. Thankfully, I retained the natural curiosity that helped me while studying, and writing for my jobs in both Journalism and Advertising. I now spend a lot of time reading and researching and growing my mind. I love to discover new ideas and learn about them. Some might call it wasting time, but my body has quit on me, so all I have left is my brain. And I am not letting that go!
  9. Out and about, on the way
    It saves time and energy to get a bunch  of things done while you’re already out. Now, I have to plan everything, and schedule errands according to how I’m feeling, versus just making a pit stop on the way home from work. It was hard to lose my relative independence.
  10. Separation of work and home
    Taking care of myself has become my job, and my purpose. However, I never get a break and cannot take a vacation to clear my head. From the time I awaken to the moments before drifting off to sleep, I am consumed with managing my health. Even the shortest stints out of the house require planning medications and treatment timing. If I try to ignore or put off something, my body doesn’t let me forget it.

Without darkness, there would be no light.

Despite these changes, however, I have earned some amazing gifts.

  1. The chance to take care of myself
    I remember waking up the very fist Monday after I retired. I felt crummy. But I suddenly realized that I didn’t have to shower, drive to work, and spend 8-10 hours solving problems. Instead, I could ease my way into my day, take my medications, and rest.  I could spend an hour in the bathroom if I needed to do so. I could have a coughing attack without bothering people around me. I could focus on myself. Such a relief after trying to be as normal as everyone else and keep the focus on my accomplishments and not on “how sick will Toni be this week?”.
  2. A new perspective
    Everything looks different to me now. As I spend a lot of time waiting for doctor appointments, treatments, and medications to work, I have the luxury of watching and actually seeing. When you sit in the same place for hours, you get to see details that most people who are rushing around never see. The subtle changes of someone’s face when they’re feeling emotions. The curiosity of a child when something novel catches their interest. The way that people sit and stand when they think nobody’s looking, and how it changes when someone is looking. Happiness. Sadness. Fear. Relief. I get to see so much that I ignored before, and it’s such a gift to experience the subtleties of life.
  3. Quality time
    I am unable to spend a lot of time doing anything specific. Cleaning. Socializing. Concentrating. So when I do find the energy and stamina to do something fun or enjoyable, I soak up every second. I’ve actually come out of the habit of taking pictures – I’m so busy being in the moment that I usually forget until the end (and I LOVE being able to take a picture to remember the moment).
  4. Supporting others
    Several years ago, I was searching, yet again, for a purpose. It was during a period of a few months that I kept receiving phone calls and emails from different people in my life – in person and online – seeking advice. It occurred to me that this is something that has happened often. Then it dawned on me – what if my purpose in life was to help people through experiences I’ve had? That’s what inspired me to start this blog, and then 3 years ago, to create an online support group for women with CF. There is no greater feeling than helping someone. Seeing relief on their faces. Watching them navigate a crisis and emerge victoriously. Celebrating their victories. God created us for one another. WHAT A GIFT!
  5. The chance to live in the present
    Think about time. A minute can seem like a second when we’re having fun, but feel like an eternity when we’re in pain. I’ve spent a lot of time waiting – for doctor appointments, tests, for pain/discomfort to ease. Imagine the worst pain you’ve ever had, or the worst pain possible. At that moment, you are at your physical limits and your mind can handle nothing else – this one breath, this single heartbeat. But amazingly, the need to live moment to moment in difficult times is also an opportunity to see the beauty in life as it happens. A butterfly passing my window. The brief moment when a cloud looks like a heart. Catching the smile of my husband across a crowded room. I’ve heard that life is merely a series of moments. There’s nothing “mere” about it. Moments are what stick in our memories. Mental photographs of moments that touched our hearts. Oh, what a gift to stop long enough to experience them!

Lemons out of lemonade and all that.

Quick September CF Update

I haven’t been online too much this summer. I have been sick so frequently that some exacerbations began only days after the previous one(s) settled down. It was a rollercoaster of antibiotics, mostly to treat my MRSA.

Now, it appears that the common CF bugs – Pseudomonas Aeriginosa – has taken advantage of pushing down the MRSA, and the 3-4 strains of PA (I culture between 1 and 4 strains at any given time) have found their way to the top of the food chain.

My lungs are in rough shape – coughing at night, weird night moaning that signals dropping oxygen levels, extreme fatigue, coughing up mucus and pus, fever, and the feeling that I am absolutely losing my ability to function on a basic level.

I am likely going into the hospital next week for IV antibiotics.

There are no oral antibiotics that can treat my strains of PA, so my only option is a cocktail of 3 different IV antibiotics to try to cover all of the bugs growing in my lungs right now. As you may know, it’s become increasingly difficult for the Interventional Radiology team to find a good vein to place a PICC line, and a year ago, I ended up with a very uncomfortable tunneled PICC line that threaded through my jugular vein – a process that took 4 agonizing hours while my face was covered with a sheet.

It will take a miracle to find access into my veins…thanks to the number of blood clots (we’re at 3) that have formed around PICC lines), a dozen or more traumatic PICC line placements each lasting hours, repeat 2nd and 3rd failed attempts, and failed medications designed to put me in a twilight sedative state (that does not work on me).

The nightmares have come back and I am asking for prayers for my strength and courage to get through what they may have to do. I feel like I should be “a trooper” since I know what to expect, but sometimes, it makes me more fearful to experience again.

I will update when I make a decision or anything changes (like a miraculous turn of events!!).

Thank you for checking in.


Please Support our Fundraiser for Cystic Fibrosis!

It’s that time of year again! We’re walking to raise funds and awareness at the Cystic Fibrosis Foundation Great Strides event!

This is our fourth year participating in Great Strides! Here are our totals for the previous three years:

2013: $2,575
2014: $2,310
2015: $2,935

The past two years, we had held our own additional fundraiser, Darts for CF, that helped raise our totals, but we aren’t able to do so this spring. So our only fundraising efforts through the Great Strides event!

We hope to raise at least $1000 this year, so I’m reaching out to everyone!


Continue reading

Hope is an Amazing Thing

Tomorrow marks the start of my second month on the new CF drug, Orkambi.

Just arrived!

Just arrived!

It’s been one crazy month. Just as I started the Orkambi, I ended up having a flareup of my bugs. It came on kind of slowly.

Prior to starting Orkambi, my doctors warned me that I could experience side effects, so for the first week, I chalked up most of the symptoms to the new medication. But my husband, in his usual crazily-accurate assessment of my symptoms, tried to convince me to contact my doctors. I finally did, when my fever spiked to 103.5, which definitely wasn’t listed on my list of symptoms to monitor. Continue reading

The Road to Orkambi

You may have heard that there is a new medication for people with a certain gene mutation of Cystic Fibrosis.

The FDA has approved a new drug that treats patients with two copies of the most common gene mutation, Delta f508. Forty-five percent of CF patients fit this profile.

The Basics of the Cystic Fibrosis Gene Mutation

Each of the more than 1,500 known mutations affects protein responsible for the proper transport of salt and water through each cell, creating a thick, sticky mucus that clogs the lungs and digestive system. Each of those mutations in the CFTR (transmembrane conductance regulator) protein has a different faulty mechanism.

Think of the protein as an electronic garage door. Consider some ways in which the door can malfunction: Continue reading