Make it your dream

There are few moments in life as magical as your wedding day. It is the day that celebrates the love and beauty of a relationship that took time and energy to cultivate. You deserve to have the wedding be everything you dreamed it would be. I was set on having my favorite local musicians play the music for the wedding and during cocktail hour. My husband and I were also set on having tacos and an open bar for our guests. The last detail was having my mom make my wedding dress. We made sure to set these details early so we wouldn’t stress out later.

Keep it simple

Speaking of stress, there’s nothing worse than the stress of details to distract you from the magic of your wedding day. The only really important detail is that you and your spouse are there (with the appropriate people and paperwork, of course). My husband and I decided to keep decorations to a minimum, so we chose a beautiful venue that didn’t need extra help. It saved us not only money but also time and energy in the setup. Instead of spending the night before the wedding decorating, the venue set up the chairs, and all we had to do was show up and get married. This was great because I was running around all day collecting odds and ends to prepare for the weekend. I was so exhausted that I could not have imagined having to deal with any more than what it was.

Keep it casual

Unless you are set on having a super traditional wedding, I suggest keeping it casual. It keeps stress levels low and lets you have fun. Your wedding is something for you to enjoy! For our wedding, we kept it casual by splitting up the ceremony and reception on different days. There were a few different reasons. The main reason was to avoid the exhaustion of going from 8 a.m. until 2 a.m. The other big reason was that separating the ceremony and reception allowed us to keep the ceremony small and intimate with our immediate family. It was perfect.

Have a Plan B (in case you get sick)

The stress of planning and preparing a wedding can have negative effects on your health, so it’s good to have a Plan B if using IVs on your wedding day would complicate plans or your wedding attire. IVs are not ideal, but they’re better than feeling like crap and not enjoying your wedding day.

Luckily, I didn’t have to deal with IVs in reality, but my mom did bring up the need for a Plan B while we were designing my dress. My design had lace covering my port, though, so if it was accessed, it wouldn’t have been seen in photographs. My doctor was also concerned about my port possibly ruining photos (perks of having a lady CF doctor, I guess). At my clinic appointment leading up to my wedding, we chatted about the design of my dress. I wasn’t concerned, but we had a good laugh about it. If that’s something you care about, though, make a contingency plan!

Bonus tip: Make a clinic appointment two weeks before your wedding so that if you need a two-week antibiotic course, you are done and in tip-top shape for your wedding.

I hope that these tips help people feel a little more comfortable about tackling their monster of a wedding with love and joy. If you have planned or are planning a wedding, tell me your tips or about the best part of your wedding!

The post Wedding Planning With Cystic Fibrosis appeared first on The Living, Breathing Wendy.

The guilt for me increased more and more when I stopped being able to live up to my responsibilities. It’s not that people don’t understand. I know that the people in my life get that I’m sick. What makes me feel guilty is that I ask for — or more realistically, just receive — this understanding from people time after time. It’s not once in a while or an isolated incident — it’s several times a year, for weeks at a time.

My partner understood when a past bout of sickness caused me to cancel plans for our anniversary and his birthday. We were supposed to go on a lovely weekend trip, something we had been looking forward to for a while. Our lives have been full of paperwork, major life planning, job hunting, and other nitty-gritty adult life tasks. We needed a short break. Instead, we spent the weekend in separate beds, as my poor partner tried to get some sleep between middle-of-the-night IV changes and coughing fits. Much of my time was spent in a zombie-like gaze, incapable of any meaningful conversation or romantic cuddling. “In sickness and in health” it goes, but “in health” is so much easier.

My employers had to acknowledge and understand yet again after I failed to complete my work. I am lucky to work for people who are incredibly kind and understanding, but it doesn’t negate the fact that I am behind in my work. People are counting on me.

My family and friends understand when they have to change plans last-minute, assuming they even get a plan out of me in the first place. My poor service dog, who needs constant upkeep in his training and loves to play, had to be understanding. Heck, even the general public has to be understanding when I’m coughing up a storm or stopped in an aisle at a store.

It’s not that I think anyone blames me, although I can’t say the thought has never crossed my mind. It’s the constant feeling of asking too much and not being able to do anything about it. The phrase goes: “It takes a village.” I would be lost without all of the help and understanding I receive from friends and family, and even strangers. It doesn’t mean that I don’t wish things were different.

I think there will always be a piece of me that feels guilty for not being physically capable of living up to my own expectations. The guilt of being sick isn’t always bad, though. I’d say it keeps me pretty grounded and pushes me to do as much as possible before throwing in the towel. But, man, does it suck.

***

This was originally posted on my column, Path Unknown, on Cystic Fibrosis News Today. My column pieces are posted on Mondays. Pieces cover a wide scope of topics revolving around my life and experiences with cystic fibrosis.

The post The Guilt of Being Sick appeared first on The Living, Breathing Wendy.

Each step that my body takes in its cystic fibrosis progression gets more and more frustrating. It feels like each time cystic fibrosis tries to chip away at my personality, I have to fight back so hard to keep alive who I am. I remember feeling so defeated during my first hospitalization. I lost a little of my inner spark, but quickly regained it. Then, the first hospitalization that made me miss school. Then, the hospitalization when I realized my cough was never going to go away, not even for a short time right after an admission like it usually did. Now, people can identify me from afar just by my cough alone. Then, the three consecutive hospitalizations when I didn’t get better.

I feel fortunate that my progression has been relatively slow. I have historically been able to experience a decline and get used to that new baseline before another decline sets in. Though I feel like I’ve now hit the marker where I’m not ever going to get fully used to my baselines anymore, I’m still pushing and fighting to preserve what makes me, me. It’s funny, I would say that a lot of people see me as overly ambitious. It’s a part of my personality that I was talking about preserving earlier. I am always determined to live out my life in the best way that I can. I admit that this has been getting difficult. I’m finding it harder to find a balance between my disease and living my life, and instead, I have to make more choices — about how much to work, when to get treatment, how many activities I can handle in a day, using a wheelchair on hard days, and so much more.

Where is this line between living our lives and caring for our bodies? Do we cross that line to preserve our personality and happiness? Sometimes there is a balance, but sometimes we have to make a choice.

***

This was originally posted on my column, Path Unknown, on Cystic Fibrosis News Today. My column pieces are posted every Monday. Pieces cover a wide scope of topics revolving around my life and experiences with cystic fibrosis.

The post Progression, Personality, and Perseverance appeared first on The Living, Breathing Wendy.

I started five different column pieces, each of which I would get a solid start on, and then nothing. I stopped understanding where the piece was going and didn’t like any of the words that I was writing. A few years ago, I started developing chronic fatigue. It started slowly, then quickly snowballed. In the past year, it has developed into brain fog. Very frustrating. I love using my brain for writing, reading, problem-solving, and critical thinking. It increasingly feels like cystic fibrosis is taking all these parts of my personality away from me. So here I am today, compiling a list of some tips and tricks that I use to combat brain fog and feel a little more like myself.

1. Don’t force it.

I can’t tell you how many times I have blocked my own brain by trying to force my way through brain fog. “Just do it.” How many times have we heard that? Unfortunately, at least for me, if I “just do it” and try to force myself to work through the brain fog, it just puts up more blocks. Then I get frustrated, and all I can think about is how I can’t think. It just spirals from there.

Cool, so how do you get past brain fog and still make your deadlines (because if you’re forcing it, that’s often why)? Be ahead of the game. I am guilty of this not being a natural instinct. In fact, I’m still learning how to do this. I used to be a procrastinator. I would thrive under the stress. My brain fog does not. Now I start writing and drafting at least a week before.

2. Get inspired.

One of the best ways to get inspired is to look to others. CF News Today columnist Brad Dell’s latest piece about brain fog directly inspired this post. It got me thinking about my own experience with brain fog, and how I have been insanely frustrated by its hold on my life. Find a piece of other people’s lives or the world around you that makes you think about your own. Capture it and go. I find that making a note of these inspirations in a note-taking app on my phone really helps because brain fog causes forgetfulness.

3. Create the mood.

Ditch the phone and whatever other fancy gizmos that cause a distraction. Find the type of environment that makes you feel inspired and ready to work. For me, that’s open space with lots of natural light and structured seating.

Next, put on some music — music that is going to make you focus and productive. My go-to is this Classical Essentials playlist on shuffle. This helps me drown out enough thoughts that I won’t get distracted without drowning out the thoughts that I need to work. Whatever you listen to, just make sure it doesn’t have words.

It’s also important to get your brain in the right mood. My brain fixates on chores and tasks that need doing, so I always make sure to get those done before I sit down to write. Also yoga and meditation, that’s some great stuff.

4. Let it flow.

A friend of mine gave me this very useful tip. Just let the words flow out of you, even if you don’t like them. When I use this technique, I have to write everything my heart desires and then walk away. Don’t reread it right then. You will get frustrated. Instead, write all you can and come back to it after you’ve had a solid break. For me, this is usually the next day. Your rough work can have a really good base but just needs to be re-worked.

I know that these tips and tricks are focused on writing, but I use the general ideas in all aspects of my life. Whether it is work, family, friends, or hobbies, brain fog can affect every aspect of your life. It’s one of the reasons that I haven’t been very active on any of my social media platforms — Instagram, YouTube, Facebook, and even my blog. As my brain fog developed into almost a daily issue, I took a step back and prioritized what I needed to focus on first. I truly believe that as these steps of beating brain fog become a habit, I will be able to handle more. Hopefully, you’ll see me around the internet again real soon.

Comment and share your secrets for beating brain fog.

***

This was originally posted on my column, Path Unknown, on Cystic Fibrosis News Today. My column pieces are posted every Monday. Pieces cover a wide scope of topics revolving around my life and experiences with cystic fibrosis.

The post How To Beat Brain Fog appeared first on The Living, Breathing Wendy.

There’s a memory that sticks with me:

I am lying in my hospital room, hooked up to my IV, thinking about how it’s already afternoon and I haven’t gone down to the cafeteria to get coffee yet. See, I’m the type of person who just sort of rolls with the punches. So, yeah, I was dealing with a lot of fatigue, caused by both my lung infection and the IV antibiotics that were to save me from the infection, but that’s just part of it. Then, my joints started aching and this throbbing headache set in. Coffee. I need coffee. That’s all I could think. I am a caffeine addict, after all. There’s no other way to put it. It was already afternoon and I hadn’t gone down to the cafeteria to get coffee yet. Withdrawal, not fatigue.

I dragged myself out of my hospital bed and fought my way down to the cafeteria. Coffee in hand and mostly consumed, the elevator delivered me back to the fourth floor. I got back to my hospital room, crawled in bed, downed the rest of the coffee, and waited for the caffeine withdrawal symptoms to subside. They did not. In fact, they just got worse. By the time my parents showed up with dinner, I couldn’t move because my body hurt so badly. My dad confirmed that I had a fever. I just laid there feeling guilty that I couldn’t visit with my parents, and that I was just this fragile shell of a human. Not caffeine withdrawal … medication side-effects.

One more story for effect:

A few months ago, I woke up … at 7 a.m. Wide awake. I am not a morning person. OK, weird. The next day, I woke up … at 7 a.m. The next, today, I woke up … at 7 a.m. The over-ambitious side of me has been stoked! I have had so much more time to my day.

A few months ago, my brain fog started getting pretty extreme. It has made me pretty irritable. I get frustrated and overwhelmed very easily because I can’t think. I am normally a very easygoing and put-together individual, especially in times of chaos. Hmm … weird.

A few months ago, I started really struggling with some GI complications. I was feeling bloated all the time, especially after eating. It would become so bad that it was painful and nauseating. I was often constipated and struggling to eat, yet I weighed 6 pounds more at my most recent clinic appointment. Weird.

The next day, I came across an article about five common medications that can be bad for your health. Because I’m somewhat of a medical nerd, I wanted to know if I knew the medications listed. The second medication on the list: prednisone. The article listed its long-term side effects. I began piecing together the puzzle. Insomnia, mood problems, headaches, bloating, increased infections. It all started getting worse around the same time. I had attributed the issues to other things, such as my history of insomnia, fatigue, and various CF symptoms. I realized after seeing prednisone’s side effects laid out in front of me: The steroid was likely causing so many of my health problems.

The last memory I will share is about these medications saving my life:

I am sitting in my hospital room, hooked up to my IV and oxygen. I was up all night, coughing. My pulmonary lung function numbers went down yet again. They were dipping into unseen territory. Frustrated is a mild way to put it. I had a mix of a terrible lung infection and an ABPA flare. The IV antibiotics stopped my lungs from bleeding and the burst of prednisone kept my ABPA at bay. After more than a month of treatment, I felt better than I had in a while.

The first night that I slept through the night was relaxing, energizing, relieving, and motivating all at the same time. I understood the 10 circles my dog runs in after I unclip his leash from his collar because I was no longer tethered to my oxygen tubing throughout the night and sometimes during the day. The best feeling of all was waking up knowing that I could take on the day.

These medications won’t go anywhere. I still take prednisone every single day, IV antibiotics when I need them, and other “evil” medications. But they are necessary evils to my battle against cystic fibrosis. What would you risk to live your life?

***

This was originally posted on my column, Path Unknown, on Cystic Fibrosis News Today. My column pieces are posted every Monday. Pieces cover a wide scope of topics revolving around my life and experiences with cystic fibrosis.

The post Necessary Evils appeared first on The Living, Breathing Wendy.

This is an excerpt from my column on CF News Today called Path Unknown. My column pieces are posted every Monday. Pieces cover a wide scope of topics revolving around my life and experiences with cystic fibrosis.

The post Future Planning? appeared first on The Living, Breathing Wendy.

About a year ago, my health took a significant dip. I documented this on my YouTube channel over a course of vlogs. My lung function declined significantly; I lost a lot of weight, very quickly; started requiring supplemental oxygen at night; lost the ability to exercise and be active; and I developed severe chronic fatigue. This was not a good time. My CF team did not give up in working to find out what was going on in this crazy body of mine. After tons of testing, we were able to discover from a sputum sample taken during a bronchoscopy that I was growing a new bacteria.

The treatment for this bacteria is long-term and requires three oral antibiotics. I started on the regimen right away. Luckily, aside from some minor GI issues, my body did not react negatively to the medication. I have been on the treatment for almost a year now. The results have been slow, but they have been present. I stopped losing weight some time within the first three months of treatment. By the sixth month of treatment, I started only using oxygen about half the nights. By the eight month I stopped using oxygen at night completely.

This was great timing because we took a trip to Germany a couple of weeks before Christmas, and after months of several phone calls and lots of brainstorming, we could not figure out how to get oxygen to travel. More on that later. I did a course of IV antibiotics that I completed the day before we flew out of the country. We spent ten wonderfully adventurous days wandering various parts of the country. I am so thankful that my body was able to pull it together and the treatment kicked in right before we left. I lasted just barely long enough to get through the trip, but I did and it was the most magical time.

When we got back from our vacation, my body was beat. I needed a vacation from my vacation. Then there was reality. I had work to catch up on, I had holiday obligations, and I had a service dog that hadn’t worked in two weeks. Thoroughly exhausted, I jumped into it all.

A couple of weeks later, I caught a cold. It wasn’t terrible or anything. It was just long and dragged out. Then it led to a flare of all my CF complications at once. I was knocked out for two months… two whole months. It was not fun and caused a rollercoaster of emotions, most of which were frustration. After a three weeks cold, three weeks of IV antibiotics, and three weeks of a steroid burst with a permanent daily increase, I am finally back to baseline. This baseline is not where I want to be. It’s new and it’s lower, but this is currently how I am.

Now that I am where I am, I have been spending my energy catching up on the last two months and getting used to this new baseline. Yes, I have been quiet, but that doesn’t mean I have stopped. I have been getting ahead at work, I have been delving into my hobbies again, and I have been starting new projects. The most exciting project that I have been working on is starting to make videos again. I started a YouTube channel called Dear Cyster with my sweet friend, Jordan, where we write video letters to each other. I am also writing again (obviously… :)), and so many other things that make me happy.

So… how am I? I am good. I am fighting and I am struggling, but I am good. There is much love and happiness around me to keep me living, laughing, and breathing.

The post How Am I? appeared first on The Living, Breathing Wendy.

Jordan is also a blogger. Her blog is called Joyfully Breathing. I am very excited to get to know her better because she is such a sweetheart, but also because her cystic fibrosis presents itself in a very different way than mine. I just wanted to share this new project with you because I’m VERY excited about it. Our very first video letter has been posted. My 20 Questions video should be posted very soon. Make sure you subscribe to our channel so that you don’t miss out on this exciting journey!

The post Dear Cyster Video Letters appeared first on The Living, Breathing Wendy.

I used to be such an active person. It’s hard to look back, see all amazing things I did, and realize that I don’t do a lot of those things as much as I want to anymore. I push myself as hard as I can, but that often results in worse health and more fatigue. I want to be able to write as much, or even more, as I used to. For this reason, I know I have to keep fighting. I need to push myself to write. That may mean that I need to be content with shorter posts.

I don’t want this to be a negative post by any means. This blog is meant to show what living life despite battling cystic fibrosis looks like. I spend a lot of time focusing on the positives because I like to show what living life looks like and that’s really just how my brain thinks. However, there are other realities that come along with chronic illness. Sometimes bodies are frustrating and that’s ok.

I find it best to just let it (usually by writing about it here or on Instagram) so that I can move on. I used to just ignore my frustrations, but that only led to either more frustrations or worsened health. So here is my reality, here is where I have been, and here is where I might be for a while.

Please stay tuned. It would mean a lot.

The post Is This Going To Be Forever? appeared first on The Living, Breathing Wendy.

I’ll admit, I know I’ve been kind of a hermit the last few years. A lot has changed in my energy levels and health. If I’m being true to who I am, though, that person is not a hermit. So, even though it was nearing the end of the work-week (it was a Friday and my work-week ends on a Saturday) and the show didn’t start until 10pm, I went. The band was awesome, up-beat, and a lot of fun. I swayed and danced to the music like I normally do. One of the best ways to enjoy music is to get lost in it.

All of a sudden I noticed a deep, sharp pain in the bottom of my rib cage. Nothing strange or out of the ordinary, but still annoying. I kept dancing. Then I noticed my left knee had its usual pain. I kept dancing. Shortly after, the dull headache I had started to get worse. Normal, considering it was the end of the day. I kept dancing. My chronic back pain started flaring. I kept dancing. I started to get short of breath. I kept dancing. It was then I started to notice that my body was sore. There was a general pain that I couldn’t place. It was distracting me from the music.

I kept dancing.

Instead of continuing to dance to the music, I was now looking around at everyone else dancing. How easy and freeing they made it look. When did this pain start? Am I in pain? All this was normal, so I brushed it off until it was all stacked up. When did I start dancing to try to escape the pain and free myself instead of dancing to get lost in the music? I wanted to be free like all the others enjoying the music. Were they not in pain? Why was it so easy for them? I was jealous.

I thought this was an important moment to share because no one in that bar (besides my loving friend that understood when I needed to lean against the wall, then shortly after, go home because I just couldn’t stand any longer) knew that I am sick. That’s the thing about invisible illnesses. Life can look so easy from the outside. Yes, I was dancing. I was doing what everyone else was doing, but I was in pain. Of course I still had fun and enjoyed the music. I’m also super glad that I chose to go. There will always be moments when my cystic fibrosis reminds me of its unrelenting grip on my life. No, as you can see, it does not control me, but it’s always there.

P.S. I don’t have an image from the show to put in here because I didn’t know that I would be writing this post. In the moment (at the bar), I was having fun. I was enjoying my time. The fleeting thoughts that resonated with me on my drive home are what inspired this post. So don’t feel bad that I was in pain because it really didn’t bother me all that much. I think it’s just important to remember sometimes what it takes for a chronically ill person to get out of the house and have fun.

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