Where do I go from here?

NOTE: There is a medical photo of an IV that may upset some readers. If thhis makes you uncomfortable, please do not continue.

Wow, where do I begin?

I am at the end of day 12 in the hospital. I knew that it was coming, my doctors have been trying to get me back in here since November because my infections kept flaring up.

First few days…most of which I do not remember

It’s always hard to tell when to pull the trigger and make the decision to come into the hospital and go on IV antibiotics.

Two and a half weeks ago, however, this flareup came on fast and furiously, and it was the Pseudomonas aeruginosa bugs that were in charge this time. These are the big bad bugs that I can no longer treat with oral antibiotics. So I have to go on at least two IV antibiotics for those strains, as well as an additional IV antibiotic to treat my MRSA.

Since my last hospitalization in September, I had been on oral antibiotics for my MRSA almost consistently. And now, everyone else wanted to come out to play.

When I was admitted, my inflammation levels were the worst that I have ever experienced. It freaked out my medical team. 

There is a number that they look at that can measure information, called C Reactive Protein. 

Normal range is 0 to 10. When I was admitted, I was at 156. Twelve days later, it is finally in the 20s. Getting closer.

Typically, after the first few days of antibiotics, I start to show some progress, but my numbers really weren’t going down. So my doctors repeated tests on my bugs, which basically involves me coughing up mucous and then putting it in a petri dish to grow it and see which anabiotics kill it. 

It turned out that one of them was now resistant to one of the medications I had been taking for an entire week. So they had to start a new medication for me, one that I have only had once in the past, but I had it via nebulizer, inhaling it instead of receiving it in my vein.

So I had a new drug added to my cocktail, and stopped the one that wasn’t helping.

Colliston is an old antibiotic that is rarely used these days because of its effects on the kidneys and how hard it is on the body. However, it is the only antibiotic to which one of my bugs will respond. It is a last resort.

My “jetpack” – the unit attached to the wites attached to me, monitoring my heart

 

The good news is that it started to work, the bad news is that it’s affecting my heart. So I had to stop taking a bunch of other medications that can cause the same heart injury, which sucks because they control a lot of the more unpleasant side effects of heavy duty IV antibiotics.

I also came into the hospital with a possible blood infection. I have had three series of double blood cultures and it appears to have subsided thanks to one of the IV antibiotics that also treats my MRSA. There’s a possibility that perhaps I did not have a blood infection and that one of the blood samples was simply contaminated, but they cannot take that chance and not follow protocol to the end.

So here I am…typically I would be close to discharge around The two week mark, but my doctors have shared that this is not going to resolve as quickly and smoothly as my other flareups.

PICC line with double lumen, so I can receive two medications at the same time

I am facing additional time with my PICC line, which makes me nervous because I have had three separate blood clots as a result of picklines over the years. It’s also very uncomfortable and limits a lot of things including the way I sleep, using my arm, etc.

I have also been on oxygen and might not be off of the oxygen when I leave, whenever that is. I am trying to wrap my head around the fact that I might have to go home on 24/7 oxygen. Hopefully it would be temporary, but with CF, you never know what’s going to happen.

In my head, I realize how very very sick I am – how sick I was – and how far I have to go in order for my lung function to increase. But my emotions have been riding a roller coaster that has not stopped since before I was admitted.

Yes, my inflammation numbers are going down. I am feeling a little bit stronger each day, and I actually was able to start walking in the hallways again. But I’m dragging my IV pole, my oxygen tank, wearing a heart telemetry monitor, and taking very small, very calculated steps.

This is not how I imagined progression of cystic fibrosis.

I have felt things that I’ve never felt before. Physical symptoms. Fears. Abject uncertainty.

I am 45 years old and I have cystic fibrosis. According to all of the statistics, I really shouldn’t even be alive. Perhaps that’s what’s making this harder, having beat the odds for so long and feeling confident about that, and now feeling so vulnerable and fragile.

It breaks my heart that my husband has to see me go through this and feel helpless. It hurts that I am more of a patient then a partner at this point in our lives together. I hate that my niece is a nephews have to see me so weak. I hate that my mother cries because she feels guilty for passing on this gene to me. And now that my sisters have had to help bathe me because I could not do so myself.

But on the other hand, I am more grateful for every breath that I do have. I have felt love with my husband that carried me in the most desperate moments I’ve ever experienced. I have also opened up and let my family see me vulnerable and allow them to help me. I have also allowed myself to ask for prayers and positive thoughts online. Are used to be embarrassed and felt like I was throwing a pity party, but I realize that shared experiences are why God put us on the earth together. 

Don’t get me wrong, I am not thankful for cystic fibrosis in any way, shape, or form. But I am thankful to God for every joyful moment.

I am offering my struggle to God as my penance during this Lenten season. I usually don’t talk a lot about my faith, but I know that I am still here for a reason and that God is not done with me yet. I pray for strength, courage, grace, and to still think of others, even when I’m hurting. 

I apologize for the babbling nature of this post, but there’s just so much that I needed to share. I don’t know where this path will take me in the coming days and weeks and months. I have to be patient and take each moment as it happens.

Thank you for spending your time reading my story.

Random Thoughts on Living with Cystic Fibrosis

I dream of feeling free, to engage myself with all that I see.

I dream of taking steps that lead further than my own front yard.

I dream of laughing without choking, and singing or dancing without coughing.

I dream of waking up each morning and bounding out of bed, and just taking off, somewhere, anywhere.

I still remember how it used to be when I could dance without gasping for air or my heart feeling like it was going to explode… times when my heart raced out of excitement and joy versus out of desperation to support my lungs with the oxygen they need.

It wasn’t too long ago that I had bigger accomplishments each day than simply walking up the stairs or taking a shower.

I no longer sing made-up songs about the cats or the weather or anything else that tickles my fancy, because I can’t spare the oxygen.  

I no longer dance when I hear my favorite songs, because that, too, requires my very precious oxygen. 

Instead, I shake my hands and shoulders with as much energy as I can afford to give to them.
I cannot laugh easily anymore. It robs me of my breath.

I work hard to strengthen my muscles so that they can take on some of the effort when I’m doing something strenuous like folding laundry or walking up the stairs or taking a shower.

I have to monitor my oxygen levels when I eat, because even a partially full stomach can make it hard for me to breathe.

Why has God taken my ability to dance, sing or laugh?

Today I am having a hard time seeing the glass as half-full. We, as humans, have the gift of such pleasures, and I feel robbed.

Creating Magic

The holidays are supposed to be a time of joy and celebration, if we are to follow the messages bombarding us from television commercials, festive songs, and colorful decorations.

But for many people, the holidays bring out a lot of things that are not right in our lives.

It could be the recent loss of a loved one, or the lack of finances to buy gifts that you want to get for people, or struggles with your personal belief systems, conditions such as depression or anxiety, and in my case, chronic illness.

As I’ve been pretty sick and spend a lot of time doing my respiratory Vest treatments, I end up watching a lot of television because the shaking from my vest machine makes it difficult to read or write or do anything else that requires a steady hand or steady eyes.

And I kept thinking that I still hadn’t found a gift for my husband that would give him that “WOW! this is amazing” moment that we see happen in commercials and movies and television and advertising. It’s a pretty seductive desire, the feeling of making someone so happy by simply opening a brightly wrapped box.

But that almost never happens in real life, does it?
And before allowing myself to feel like a failure, I realized how much commercialism has conditioned me to think that in order to be a good wife or sister or aunt or daughter, I have to create these moments.

But the magic doesn’t come in a box. The magic comes from our hearts’ desires to make someone happy. How many times have you made someone’s day just because they called you or texted you? How something as simple as someone opening a door for you, can make you feel that there are good people in this world who care about others with no expectation of getting anything in return?

As I have been sick constantly since August, I had to tame down any of those conditioned expectations that I was going to make someone’s world with a simple gift that I had wrapped in pretty paper and a colored bow. 

I realized that the magic that I can provide is to be able to participate in our family Christmas celebration. There have been some holidays I spent in the hospital. There’ve been some holidays when I was too sick to travel. And more lately, there are holidays when I have to save up all my energy for a week to just go “out” for two hours.

But in those two hours, I soak up every smile, every laugh, every moment that I can. Because even if I can’t last more than a few hours, the magic is in connecting with those we love. 

So whatever you have to celebrate during this time of year, remember that the biggest gift that you could give someone is a piece of your heart.


These are the people who keep me going. These are the reasons I continue to fight. And these are the pieces of my heart.

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

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