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

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Paying it Forward? Karma? Law of Attraction?

Whether you believe in doing good deeds, the power of karma, the laws of attraction, or have any other beliefs that explain how the world works, you’ll enjoy this little story.

For the past several years, we have worked with the United Way to “adopt” a family for Christmas. They identify families in need through their various outreach centers in the local community, such as shelters, soup kitchens and heath centers.

Each of those families fills out a “wish list” – there are spaces to give the age and gender of each family member, clothing sizes, needs (coat, shoes, toiletries, blankets, school supplies) and wants (toys, books, slippers, household items).  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.
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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.

Relinquishing Control in the Hospital

I just received a letter in the mail which included a six-page questionnaire about the care I received while in the hospital for 2 weeks in September.

They ask questions about the care I received, the hospital environment, my hospital experiences, tests and treatments, etc.

I am under no delusion that my care is very complex. At home, I manage 15-20 medications, test and monitor my blood sugar for diabetes, and perform airway clearance (lung therapy). It’s not just a matter of taking a bunch of pills each day. Many of them have to be taken at specific times, in relation to waking up, eating, performing certain activities (like driving), avoiding potential interactions, managing treatment side effects, etc.

So when I’m admitted to the hospital, I have to turn in all control to a series of more than a handful of different departments to manage.

Every hospitalization is a challenging experience. I’m awakened early (sometimes 4am) to get blood taken, doctors from 3 or 4 different specialties visit me daily, each asking all of the same questions, poking and prodding me according to their focus. I feel like I have to give up agency over my own body. I succumb to the authority and power of mostly strangers. Continue reading

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.
Love,

Toni

The Top 5%

I’ve recently realized something profound.

When I was diagnosed in 1972 – a month after my first birthday, the data showed that most patients wouldn’t reach their teen years.

Amazingly, though, as of 2014,  of all CF patients currently living, 50.7% are older than 18. That’s incredible news. However, the median age at death in that same year was only 29.1 years.

I am 44 years old. In the general population, most people would consider that middle-aged. But in the CF population, I’m an anomaly.

The fact is, only 5 percent of Cystic Fibrosis patients are older than 40.*

*According to info published in the most recent Cystic Fibrosis Patient Registry, information collected from 28,676 patients seen at accredited CF care centers. Most, but not all, CF patients attend such centers.


I have so many questions, but I know that I will not find any real answers.

So I will share the three things that I DO know.

1. I am beating the odds.

  • Whether you believe in luck, fate, chance, karma, punishment, or a higher being’s plan for you…
  • Whether you believe that those who live longer are more compliant with their medications and treatments than those who don’t live as long (note that I do NOT subscribe to this theory)…
  • Whether it’s due to my environment and lifestyle, such as the way or what I eat, how I manage certain issues, my BMI, the type or amount of exercise I do, my airway clearance regimen, how much sleep I get each night, or some concoction of supplements that help me recovery from flare-ups or that slow overall progression…
  • Whether it’s because, in addition to my mutated genes that cause CF, I have some crazy fabulous genes that compete with the bad ones, and many times win the battle….heck, my two grandmothers did not pass until they were in their 90s, so I have some good genes in me.

2. CF is taking its cumulative toll on my body

As I age, my body is battling the effects of decades of malfunctioning, infections and organ disease, and toxic medications to help me to the most basic things such as breathing and eating.

My lungs, digestive system, and other organs – in fact, every cell in my body – have been fighting the imbalance of salt channels and the thick mucus that causes disease in our bodies for more than 4 decades. As my organs deal with the dysfunction and disease, they become inflamed with every exacerbation. The frequency of exacerbations and the shorter recovery times between them mean that my body is often in a state of constant inflammation. And unfortunately, the number one medication that treats inflammation is also really, really bad for people with CF. It weakens our immune system and also negatively affects those of us with CF related Diabetes.

3. Having CF doesn’t preclude me from what’s considered normal symptoms of aging. Name a body part and it changes with age. CF doesn’t stop those things from happening.

My body has been fighting – since before I was born – to perform normally. Now, in what is considered middle age for healthy people, I’m starting to experience regular “growing old” stuff. The kind of stuff that make you think, “I’m not as young as I used to be”. The things that slaps you into coherence that you’re really NOT 23 anymore. Or even 33.

At least I can laugh and commiserate with my sisters when we notice one another’s white hair spreading across our foreheads, or deal with puffy eyes or a quicker-to-twinge back muscle.

Back to the white hair thing – I recently came across an online group for people with CF who have gray hair. As much as I have been fighting this sign of aging, others have reminded me that our predecessors didn’t get the chance to have their first gray or white hair!! What a privilege is it to actually have reached a point in life that indicates you’ve survived into adulthood! While I still haven’t given up the color battle, I do feel like it’s my own little secret, my own little victory that I get to wear every day (there’s always a new stray white hair popping out, somewhere on my head!).

Next-to-last final thought

All of this also reminds me that I need to give myself a break sometimes. I have high expectations of what I should be able to do and so many things that I want to do. And the reality is, that my body has been fighting for so long just to be alive, that sometimes I think I expect too much from it.

If, on any given day, my biggest accomplishment is taking a shower, I need to be OK with that. I always talk about celebrating the small victories, and I think it’s important to view all aspects of my life that way. I am proud of what I have accomplished – not just physically, or professionally, but spiritually, mentally, in the way that I view and live my life.

But the real point I am making…

I am 44 years old, I have CF, and I am still here.

And I feel damn lucky.

Let Freedom Ring. Just don’t let it be my cell phone.

I am pretty sure that people think that I am exaggerating when I tell them the number of unique phone numbers that have “Spam called me”.

This list includes – but is by no means exclusive – several hundred phone numbers that have called me with the intent to somehow scam me.


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