I Survived

Long-term steroid use can cause pretty intense side effects. Some of these include insomnia, fragile skin, redistribution of fat around the body (moon face), muscle wasting, water retention, blurred vision, trembling, weight gain, and the list goes on and on. This medication is used for decreasing inflammation in the body, but the more it is used the less effective it can be, so it is prescribed for longer and longer periods of time making these side effects more likely. I’ve been on steroids for 3 months now- the longest I’ve been prescribed thus far.

Last night, I was complaining to my husband about how unhappy I am with the side effects I’ve been experiencing. Luckily, now that I am on a lower dose many of the uncomfortable side effects have waned, but several still remain. When you feel sick AND look sick for so long, it can really take a toll on your self-esteem. I know I am being a bit vain, but after a while you just want to feel and look normal again. My husband had a different perspective. He said, “You just SURVIVED a pretty serious situation”. He’s right! I need to be gentle and patient with myself. I need to appreciate the fact that I am finally in the healing stage, even if it’s taking a while.

Before my flare up, I was weight training and making pretty good progress. Since being on steroids, I have experienced muscle wasting and have become so weak. For a while, I was tripping (mainly over the dogs) and falling because I was too weak to catch myself. I’ve felt well enough to get back into a daily workout routine at home and have noticed an increase in muscle and strength already. I’m determined to get back to weight training when my body is ready. If you are healthy- even relatively- please realize how lucky you are because not everyone has that privilege. Thanks for reading. ❤️


New Routine

Since my UC flare-up, I’ve had to pay much more attention to time. I am taking several medications per day- most are every 8 hours. As the 8 hour mark approaches, my body reminds me that it’s time. I’ve been waking between 4am and 5am every morning which is much earlier than I was waking before, so I have decided to take advantage of this extra time.

It’s really nice to have a couple hours of peacefulness in the morning. Everyone is asleep and it just feels so tranquil. It dawned on me that this is a perfect time to set a new morning routine! I’ve been reading the book, Better Than Before by Gretchen Rubin which is about making and breaking habits. According to the book, one of the best times to create new habits is when you have a big life change such as a move, job change, etc. I’d say my current situation qualifies.

Every morning, I decided to have time for self care. As a busy wife and mother it can be easy to put ourselves on the back burner. Waking up early has given me the opportunity to indulge in things I couldn’t find the time for before. I moved my more involved skin care routine to the morning instead of the evening, I practice a gentle morning yoga for 10-15 min, and I write, (hoping to post on the blog more frequently). By 6am, I’m awake, refreshed and ready for my day. I spend the last hour taking care of the dogs, straightening up if needed, and just relaxing until I start my work day at 7am.

It can be difficult to get up earlier, especially if you are going to bed pretty late. Right now, the steroids are giving me insomnia, so I’m not sleeping as much, unfortunately. I think a major hurdle to overcome when it comes to getting enough rest is to know how much sleep your body needs. Everyone is different. I have discovered that I need 7 hours a night. From there, I can easily plan when I should be in bed based on when I want to wake up. I’m not saying it’s easy to go to bed on time- that might actually be the biggest hurdle to getting enough sleep. Once you decide on a bedtime and stick with it, everything starts to fall in place.

While I was creating a new morning routine, I figured might as well create and evening one too. I decided to include my daughter in the nighttime routine to give her more structure and hopefully a sense of calm before bed. Starting at 9pm, we read at least 10 pages of a book, then we practice a gentle stretch nighttime yoga routine for just 10 to 15 min. She’s a teen, so she’s resistant, but I know she will enjoy it after a little repetition. That’s her personality. She is resistant to trying new things, but once she does, she typically enjoys it. It’s a good opportunity to spend quality time together too. I want to add on a 5-10 min meditation after the yoga practice, but I want her to get accustomed to our current routine first. We used to meditate as a family every night, but got out of that routine after just a few nights of being busy with other things. It’s so easy to fall out of a routine when your day changes.

I hope this post will inspire someone to start a new habit. Most of us have something we wish we had time for in our daily lives. It takes effort, determination, and persistence to create and maintain a new habit. Does anyone have tips or ideas for creating and sticking to a new habit? I’d love to hear about it!

First Hospitalization for UC

I suppose I should start from the very beginning. In December, I had a routine colonoscopy and the results showed that I had achieved remission. I felt better than I had in years! Just two weeks later, I came down with Covid. My case wasn’t too terrible- I had just about every symptom, but mostly just felt like the flu. I was grateful it wasn’t worse. The gasto upset was one symptom that didn’t really go away. It wasn’t too bad, but never really improved and by the beginning of March, I called the doctor because I had developed ulcers (evident by bleeding). If there is one thing I’ve learned in the 11 years of having UC, it’s to call the doctor as soon as symptoms begin. The quicker you catch it, typically the quicker you can recover.

My gastroenterologist started me on steroids right away, but after three weeks, I was only getting worse. They sent me for a CT scan with contrast and after that my body just went into a downward spiral. I was in so much more pain, losing more blood, and still unable to eat. I called back and they increased the dose of steroids. After three days with no improvement, they sent me to the ER for intravenous steroids.

I went to the hospital on a Sunday morning and I was admitted. They started me on 180mg of steroids a day. For comparison, I was on 40mg daily which they bumped up to 60mg daily before I went to the hospital. While at the hospital they also gave me morphine for pain, but after the 4th dose, it didn’t really work anymore so I quit asking for it. I was able to get a heating pad and that helped. After the first day on 180mg of steroids, there was improvement. The pain decreased, but I was still scared to eat anything. I was on a clear liquid diet of clear Ensure (didn’t know they made that until I was given it in the hospital), broth, and jello. I was sent home on Tuesday and was to resume the 60mg of steroids daily.

I was extremely nervous about going back down to 60mg, but steroids (prednisone) can be very dangerous at high doses and in general over a long period of time. They are a necessity, but after several flare ups, they are less effective. After 10 days on 60mg, I started the taper by 10mg per week. After a few days at 50mg, I noticed some symptoms return, so I called my doctor immediately. She instructed me to go back up to 55mg and we would need to just taper more slowly. So far, this seems to be working.

Since my current daily medication for UC doesn’t seem to be working any longer, my doctor decided it was time to start biologic treatment instead. I started on Humira on April 8. After three months, we will reevaluate to determine if Humira is working. So far, I’ve had two doses and I’m continuing to improve, so I have high hopes for this treatment. I was very nervous about switching from an anti inflammatory medication (pills), to a immunosuppressant (Humira shots). I was hoping to put this off for as long as possible, but I just want to feel healthy again and go out and enjoy activities with family and friends. I’ve missed out of several events due to being sick, but that’s part of living with an autoimmune disorder. I’m just ready to get back out and enjoy life again. 🏝🌊☀️🚴🏻‍♀️🧗🏻‍♀️🚣🏻‍♀️🧘🏻‍♀️

Taking a Step Back

Sometimes we have a very clear vision of what we want out of life. Then something unexpected comes along and changes everything.

I’ve always loved the outdoors and the environment as long as I could remember. I was fortunate enough to grow up on land with many pets, playing outside until dark. As I entered college, I knew I wanted to pursue an education in environmental science. I graduated with a degree in Natural Resource Conservation and loved every minute of it.

During my senior year, I was diagnosed with Ulcerative Colitis. I was devastated. After just my first flare up, which lead to my diagnosis, I knew I wasn’t going to be able to work out in the field like I had hoped. I had a new course for my life that was unexpected and unwanted.

Since then, I’ve done several different things trying to “find my way”. I’ve learned a lot over the years about what I like and what I don’t, what’s important and what’s not as important. Ultimately, it’s made me a stronger, more resilient person.

That’s not to say things are easy- they aren’t. I’m still navigating this life I was thrown into. When I’m in the midst of a flare up, it’s such a reality check. I can’t enjoy the things I did just the week before; I can’t leave my house; I’m in a tremendous amount of pain and absolutely exhausted. It’s then that I’m reminded of what’s really important in this life. Spending time doing what you love, with the people you love. It doesn’t matter what kind of car you drive, how much your home costs, what brand of shoes you wear, or any other materialistic thing humans use to judge one another. If you don’t have your health, none of the other things matter. ❤️

Diet Experiment-Day 4

Still have plenty of energy on Day four of 1,000 calories a day. I had a sandwich for lunch and a banana for a snack. I ate Brussels sprouts, broccoli, and cauliflower for dinner then berries with whipped cream for dessert. I was able to workout on the exercise bike today- increasing resistance every three minutes for 30, then decreasing every minute until I was back down to resistance of one for a total of 40 minutes.

I’m glad tomorrow is the last day because this is a pretty restrictive diet and I really just want to have a big meal. I’ve been eating a lot more vegetables which is awesome for several reasons: more fiber, more energy, and less hungry overall. This week I’ve had many temptations, but I’ve stayed on point with my goal. I’ve noticed that I’ve been less tired and in a better mood. Could be a number of reasons for that. There are so many moving parts when it comes to health, nutrition, mood, etc. My gastrointestinal issues are been SO much better. I don’t feel the pain and uneasiness like I normally do. I may have to adopt this diet in small stretches to alleviate some of my digestive issues in the future. It will take several trials to see if this actually helps me feel better or if it is a coincidence. Only time will tell! 🤞🏼

Quick note: This is not medical advice, just a personal experiment log. Thanks for reading!

Diet Experiment- Day 3

This morning I was a bit tired, but I didn’t sleep too well last night. A couple hours after I woke up, the grogginess dissipated and I was fine the rest of the day. I could have gotten a workout in this evening if I was able to, but doctor’s orders!

I fasted until lunch today, but started getting hungry around 11 (ate at 12). I had a salad for lunch then some carrots and a pickle for a snack. Squash with a black bean burger was for dinner. Normally I would use mayo, but since I’m counting calories, it’s not worth 100 of my precious 1,000. I used mustard instead since there aren’t calories. I had a hot earl grey tea with a splash of almond milk for “dessert”. I also had a mini rice cereal treat at work. It was good but not sure it was worth the 45 calories. It’s amazing how quickly you can decide if a food is worth it or not when you count calories.

I was so tempted to cheat today because I came home to freshly baked peanut butter cookies! Why this week?! You better believe I put away a few to have on Saturday! That being said, I’ve decided to just do the experiment for 5 days so Friday will be the last day.

Tomorrow and Friday I will resume working out. Still drinking a gallon of water per day. It’s actually not been that difficult. I find myself liking the challenge although looking everything up can be tedious. I’ve learned that many veggies have very few calories so you can almost eat all day if you like veggies!

My digestion seems better and I have less of an uncomfortable feeling after I eat. I try to eat a lot of fiber normally, but since I’ve been eating even more veggies, that could be part of it. I can’t wait to see if I feel up to a workout tomorrow (day 4). I suspect I will start to lose energy soon. I work in an office so I don’t do a ton of physical labor, but your body needs calories to just function properly. We will see what happens by Friday!

Quick note: This is not medical advice. Simply a personal experiment log. Thanks for reading!

Diet experiment- Day 2

Today I had more energy and wasn’t even hungry by lunchtime. I brought a sandwich for lunch, but didn’t end up eating it until 3:30 which made for an 18 hour fast. I didn’t intend to do that, but I know that once I start eating I feel more hungry. Maybe it was my subconscious trying to help me to not be hungry all day?

I felt energized, no brain fog or grogginess in the afternoon. I had the sandwich for a late lunch then chili for dinner. I ended with a small bowl (1 cup) of frozen berries with a little whipped cream and came in just around 900 calories. Measuring everything out is a bit of a hassle so good thing this is short term!

Thinking about my meals tomorrow, I’m going to opt for things that will be lower calories but more filling. Maybe some carrots? Another sandwich? Believe it or not, a homemade sandwich isn’t too high in calories, as long as you use little to no mayo (mustard has zero calories 😄).

As far as exercise, I had an appointment today and the doctor I saw told me no exercise for two days, but as long as after that I workout consistently for the remaining days of the experiment I will average the same amount of workout days per total days. I still haven’t decided if I am going to do this for 5 or 7 days. I’ll see how I feel by day 5.

Quick note: I am not a medical professional and I am not giving medical advice. This is simply a personal experiment where I am logging my experience. Thanks for reading!

Diet Experiment- Day 1

Food is so central to my everyday life because of my digestive disease. I’m always trying to figure out the “best” diet or times to eat. I’ve tried intermittent fasting, fasting for several days ( when I’m having a flare), eating a lot of fiber, eating less fiber, eating more raw foods, eating well cooked foods…and the list goes on. I find I feel best when I’m just not eating, but that’s not sustainable. I’ve decided to try some experimentation with different things and log it here: an online journal if you will. 🙂

Yesterday we went to a birthday party for my nephew and we ate quite a bit!! It was delicious and fine to do once in a while, but today I started a new experiment: eating 1,000 calories a day.

I try to listen to my body’s cues and eat when I’m hungry which is close to lunchtime. I probably don’t eat much more than 2,000 calories a day most days, so I don’t think it will be that difficult. About three weeks ago, I started drinking one gallon of water per day and have been successful! I workout on a stationary bike at least 4-5 days a week for at minimum 30 minutes. This is my starting point.

Today I hovered around 1,000 calories. It wasn’t difficult at all. Instead of the bike, I used an app for HIIT workouts (25 min). I know I should only change one thing at a time in an experiment, but I feel it’s close to the same cardio and I can always retry the experiment again only changing diet. I typically switch up my workouts between barre, HIIT, and bike anyway although I’ve only done bike for the last three weeks.

What’s the point of this? I just love to try new things and see what happens. I hope one day I can find an awesome strategy the can really make me feel good long-term. I’ll post an update tomorrow on hunger, energy levels, and anything else I notice. As always, thanks for reading!

Looking for Fulfillment

When I was little, I saw older people as wise, having all the answers to life’s questions and problems. The older I get, the more I realize that most people don’t have the answers. Does anyone have it figured out?

I thought by this time in my life I would be “farther ahead” , whatever that means. Sometimes I feel as though I’m on a hamster wheel, going nowhere. I’m not sure what I expected my life to be by this point. I never was that kid in middle or high school who knew exactly what they wanted to be when they grew up. I still don’t know. I changed majors more times than I care to admit. I happy enough in my career, but why do I always yearn for more? Is it ambition? Do I have unrealistic expectations? I just feel unfulfilled.

I have so many ideas and so many things I’d like to accomplish in life. I want to make a difference. I want my life to mean something. I recently sponsored a child from another country and while it’s given me a great sense of meaningfulness and generosity, I still feel a pull to do more.

Sometimes I wish we had more than one path we could take in life. It’s hard to fit it all into one lifetime. I’ve had many different jobs and experiences, which in a certain way I am grateful for, but in another, I wish I could just choose something and be happy. I always feel like I’m looking for more. Things are just temporarily satisfactory. It’s not material possessions, it’s more so to have a lifestyle in which I feel fulfilled. I want to have more time with family and my husband, more time to explore, more time outdoors, more time to rest. We all wish for things outside of our reach – that’s pretty normal. I just want to figure out how to be at peace with my life – enjoy the present and the journey to the future, not so focused on the future that I miss out on being happy in the the present.

For now, I’ll get back into meditation and writing in my gratitude journal. I’ll start here: Today I am grateful for the ability to take a walk after dinner in January with no more than a light sweater.

What are you grateful for?