Moving Forward—Life with Chronic Disease

Moving Forward–Reflecting on life with Crohn’s for eight years.

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The devastation, shock, and confusion of being told you have an incurable, potentially life-threatening disease is hard to describe. It’s easy to feel as the world you once knew has collapsed around you. Multiply that feeling by 3x or 4x for each time you are diagnosed with another chronic disease and it’s easy to feel overwhelmed and powerless.

It’s been eight years since my initial diagnoses with Crohn’s Disease and Arthritis. Unfortunately, I had symptoms for many years before I was diagnosed, which lead to extensive damage to my digestive tract and body. Left untreated the disease in my body created a toxic-megacolon, a severe complication of IBD which causes the intestines to rapidly expand, while I was away on vacation. I had to be rescued by the Coast Guard off of a cruise ship, and spend three weeks in the Miami Children’s Hospital before being stable enough to fly home and spend three months recovering at Primary Children’s Hospital before being released. (More on this story in another blog post coming soon J)

During this time my life changed forever—I lost an extreme amount of weight, I developed severe avascular necrosis in my ankles due to heavy steroid usage, but more importantly I learned the road to remission is an ever-going battle and that positivity can make all of the difference in the world. Leaving the hospital, I looked and felt less than ideal, but I knew things could get better—and things did get better!

It’s been eight long years, but I’m so grateful to say that I live an almost ‘normal’ (no one has a normal life) life now. I’ve achieved remission in both Crohn’s Disease and Arthritis with the help of my amazing doctors and nurses. I’m able to work and contribute to society, I can travel wherever I want to, I can try new foods, and most important of all I can enjoy life.

I’m not saying it’s easy to live with chronic disease, but it is definitely worth it to keep a positive attitude and outlook on life. I know there will be some days where everything will just seem to go wrong. However, just keep on pushing and staying positive and hopefully before you know it, things will start improving slowly but surely.

It’s hard to believe how much your body can change in just a couple of years. Looking back it seems impossible that my body could be in the condition it is today. Don’t get discouraged in your fight against chronic disease. Keep believing and stay optimistic—you might be surprised by just how much it can really help! I hope everyone can keep moving forward in their fight against chronic disease and live as healthy and happy as possible!

What You Don’t Know About Me – Life With Invisible Illness

Life With Invisible Illness–What You Don’t Know

What you probably see when you look at me is a normal, healthy 24 year-old. What you probably don’t see is someone living with multiple chronic diseases. When I was 16 years old I was diagnosed with Crohn’s Disease and Arthritis, and shortly after diagnosed with Avascular Necrosis. These conditions can be life-threatening and have a severe impact on quality of life.

While I’m lucky to currently be in remission from Crohn’s Disease and Arthritis (for the most part) and be able to manage my Avascular Necrosis symptoms, I used to be very, very ill. During this time I realized the majority of people could only see me from the outside, and couldn’t see the battle raging inside my body. Here’s what you didn’t know about life with multiple chronic diseases:

Every single day is a constant battle—even the smallest of tasks like getting out of bed become monumental obstacles! During a flare-up, your body is literally at war with itself, and your body pays the price. Getting ready, going to school, going to work, cooking dinner, etc., — normal tasks become impossible missions for people like me living with severe invisible illnesses.

Once you are somewhere like school or work, you’re beholden to the bathroom at your body’s will—you have no choice. The flare up causes severe pain that ravage your insides which makes it hard to focus on school and at work. It’s almost impossible to focus on any task which translates into poor performances. In addition, many medications can cause mental fogginess which makes it that much tougher to focus. Unless you have experienced it, you have no idea how hard it is to concentrate when your body is at war with itself. The next time someone at school or work tells you they have an invisible illness; you better give them some major props!

Your social life becomes almost non-existent. Going out and having fun with friends seems impossible. Not only does being sick make you tired and cranky, but many medications make you even more fatigued, grouchy, and even a little crazy. It’s common for people with invisible illnesses to be anemic which literally saps the life out of you, and that makes the energy and effort required to go out seem impossible to gather. Even if you do make it out with friends, you’ll spend most of the time in the bathroom wishing you were at the comforts of home. To make things even worse, spending all that energy and effort going out with friends will exacerbate your flare up—it’s a lose-lose situation.

People can be very judgmental. Luckily, the vast majority of people are very accommodating and supportive. However, the few people that decide to make mean remarks like, “You’re faking it”, or that, “You’re being a wimp” really hurt. Just because you can’t see it, doesn’t mean it’s not there. It’s hard being a young adult and having to use a handicap pass for parking so that you can even make it inside a store without dying, but then getting heckled and yelled at by people who think you are faking and abusing the system makes it exponentially worse. To have a professor in school think you don’t really have to use the restroom and that it’s not an emergency is very hurtful and painful—maybe if they could see what was happening on the inside it’d be a different story.

Your body gets beat up on the inside and it starts to show on the outside. It’s very common with many invisible illnesses to get symptoms that appear on the outside of your body, some symptoms include: Acne, cysts, hair loss, moon face, water retention, weight gain/loss, and etc., just to name a few. These unwanted symptoms will lower anyone’s self-esteem and make life that much more difficult.

You become very thankful for all the love and support you get from your friends, family, neighbors, and even random strangers. The smallest acts of kindness like someone just asking how your day is going or even someone telling you that you are looking good can make all the difference in your day. You become thankful for everyday and for the possibility of one day getting better. You realize how lucky you are to have doctors and nurses working around the clock to help you get healthier and back to normal. As you get better, you have the desire to help others who are struggling as you once were. You realize that even though living with invisible illnesses is excruciatingly hard, it has made you a stronger and better person.

New Year, New You!

*The only limitations in life are the ones you set for yourself*

It’s a new year, and that means the opportunity for a new you! One of the most common excuses I hear people say for not setting a meaningful resolution is that they’ll just break it. Now, this is a very understandable concern because chances are you will indeed fail and not keep your new resolution! However, just because you don’t keep your new goal doesn’t mean you’re not making progress and becoming a better person! Skeptical? Hear me out, and follow these simple steps:

  1. Make A Meaningful Resolution- Setting a goal that is unrealistic and unattainable will get you nowhere. In fact, it’ll probably make you feel worse about yourself. With that being said, how do you know if your resolution is a good one or not? Set a SMART goal! SMART is an acronym that stands for:
    S-Specific
    M-Measurable
    A-Achievable
    R-Realistic
    T-Timely
    If your goal meets the above criteria, then chances are you’ve created a meaningful goal. However, if your goal is to get the body of your dreams chances are you’re not going to fulfill your resolution. Don’t fret, if you’ve made a bad goal like the one above, it’s easy to transform it into a SMART goal and it’s never too late to do so. Instead of setting the generic, ineffective goal of getting into shape, let’s look at the smart way to do so! If we say our goal is to get healthier and we’re going to do it by exercising 5x a week for at least 30 minutes per session, we’ve now created a SMART goal. We can go through our checklist to make sure. Is this goal specific? Yes, we are going to exercise 5x a week for at least 30 minutes. Is it Measurable? Of course! It’s easy to measure if we exercised or not for at least 30 minutes! What about Achievable? Exercising 5x a week is no small task, but you can do it! Realistic? You bet, it’s only for 30 minutes 5/7 days out of the week. Timely? Our period for completing this goal is for the entire year. That’s a long a time and is daunting to almost everyone, so it’s better if we analyze our progress month to month. Can I exercise 30 minutes per day, 5x a week for this month? Absolutely.
  2. Learn Why You Fail! – Afraid of failing? Don’t worry about it. Seriously, don’t. The reality is everyone fails at some point in their life. Failure is a harsh reality of life. However, failing at something gives you one of the greatest learning opportunities. For example, if you aren’t achieving your goal of exercising for 30 minutes 5x a week, find out why. Whatever the reason, learn what you can do to resolve it. If you’re spending all of your free time watching TV instead of exercising, look at ways to combine the two. Maybe go to a gym and run a treadmill with a TV, or go to a cardio cinema. Learn why you are failing and find a way to fix it!

Let me know what SMART goals you have set for the New Year! Share your progress you make as you fulfill your goals. If you do fail, learn why and find a way to resolve it! Here’s the best year and you yet!