Tag: #avascularnecrosis

25th Birthday–New Goals

I share two important goals as I celebrate my 25th birthday!

Welp. I’m officially in my mid-twenties now. Yesterday, July 2, was my 25th birthday which is hard for me to believe—It’s crazy looking back and seeing where I’ve been, and just how much I’ve progressed. Ten years ago, I had rampant, undiagnosed Crohn’s Disease which has changed my life forever. I’m eternally grateful I’ve been able to heal and recover and get to the point of health that I have today. Looking forward to the next ten years I have multitude of goals that I want to accomplish, but specifically two really stick out to me:

  1. Maintain My Current Level of Health and Continue to Heal- Ask anyone with a chronic disease, every day is a battle to maintain your health. There are so many things that could trigger a flare up or a setback. It’s so important to take care of your body and listen to it’s needs. I also want to make significant improvement the condition of my ankles. As many of you know, I have severe avascular necrosis combined with arthritis in my ankles which prevents me from running, jumping, and lifting heavy weights. I’d love to prove the doctors and everyone else wrong and make progress in my fight against avascular necrosis. One day I’d love to be able to run!

 

  1. Help Others With Their Chronic Disease Battles- I feel extraordinarily blessed in my fight against chronic disease that I’ve had the best of the best doctors and resources to help me get better. I’m aware that not everyone has had the same resources and opportunity to get better like I have. I’m working on mediswarm.com to help others dealing with chronic disease to find a support group that can actually help them get better along with finding answers to their questions, sharing ideas, and being able to see top-rated solutions. I’m always available to talk about ways of living with chronic disease and serious life hacks to make things better. If you ever want to talk, chat, IM, whatever, just let me know 😊

 

I know I only shared two goals, but I feel like they are so very important. If I can continue to take care of myself, then I will be able to help others in their journey even more. Here’s to the best yet to come!

A Beach A Day, Keeps The Doctor Away

Sometimes a day at the beach is just what the doctor ordered. Seriously. Multiple studies in both the US and Europe have linked exposure to sunshine to lessen your chance of developing IBD. For those already with IBD, exposure to sunshine can help relieve your symptoms. Study #1 Study #2

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Eagle Beach, Aruba. Enjoying some unbelievable beaches and waverunning!

With that in mind, I had the pleasure of spending last week in the Caribbean aboard the beautiful Carnival Vista visiting Grand Turk, Dominican Republic, Curacao, and Aruba. Long days loaded with sand and the sun is exactly what the doctor ordered for me! It’s surprising to notice multiple health benefits ranging from not noticing my arthritic ankles to enjoying more energy.

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Carnival Vista docked next Holland America Eurodam in Grand Turk

The combination of the stress free week, thanks to the wonderful crew and staff of the Carnival Vista, and plenty of sunshine in the warm Southern Caribbean is exactly what my body needed during a very cold and snowy winter in Utah. If you read the studies linked above, you should now know that sunshine is the best form of Vitamin D, and if you are lacking Vitamin D it can cause IBD or make your symptoms worse if you already have it.

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South Beach, Miami Beach

Always talk to your doctor about the best way you can increase your Vitamin D levels and make sure your skin is protected! It’s very, very important to remember to always protect your body while enjoying the sunshine. Make sure to use sunscreen and wear protective clothing. Skin damage just isn’t worth it!

If you’re feeling the winter blues and need an escape, a sunny vacation may be just what you need! Let me know your favorite vacations to catch some sunshine!

Moving Forward—Life with Chronic Disease

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

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!

Finally healthy enough to leave the hospital!
Severe weight loss due to IBD

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!

5 Tips For Traveling With Crohn’s Disease And Arthritis

5 Easy tips for traveling with Crohn’s Disease and Arthritis!

1) Check With Your Doctor

It’s always worth running your travel plans and ideas with your doctor. Your doctor should make sure you are healthy enough to travel and recommend any needed vaccines if you are going out of country. Your doctor can also make sure you have the right prescription so you don’t run of out medication during your trip! Talking to your doctor about your travel plans is a no brainer! Whenever I am planning to go anywhere I send a message to my Doctor through MyChart (Web Portals differ by provider but most have messaging capabilities). Sending a message to your doctor through a web portal is usually sufficient, but it may be a good idea to see your doctor in person if you aren’t doing well.

Remember, if your doctor says you’re not healthy enough for travel LISTEN! Trust me, it sucks being sick on vacation and it really sucks having to be airlifted off a cruise ship because you are really sick! Click the link to check out my Coast Guard Medical Evacuation from the Norwegian Pearl: https://www.facebook.com/kayden.nelson.9/videos/t.505454278/45145023042/?type=2&theater)

2) Pack Your Medications

While this may seem like a no-brainer there a lot of people who are hesitant to bring their medications on their trip due to various reasons ranging from being nervous about going through security with them to being worried about them getting damaged while traveling. While these are valid concerns there are some easy solutions!

It’s totally fine to bring a valid prescription with your name on it when you travel. Just make sure the prescription isn’t expired and your name, the pharmacy’s name, and your doctor’s information are all on the prescription bottle and you should be good to go.

If you are on a biologic like Humira, Remicade, Simponi, Entyvio, etc. make sure you don’t miss a dose while you are traveling. If you get your medication at an infusion doctor, talk to your doctor about either getting your infusion a little early or taking it late. Usually earlier is better but always talk to your doctor and listen to their recommendation (Another great reason to run your travel plans by your doctor first). If you take your medication at home reach out to the drug company about getting a travel kit. Simponi makes a great travel kit with information to help you easily get through TSA and keep your medication cold while your travel.

Simponi Travel Kit Information: http://www.simponi.com/rheumatoid-arthritis/get-support/treatment-support/travel-pack

Humira Travel Kit Information: https://www.humira.com/humira-complete/ongoing-support

3) Have a Plan

When it comes to being prepared it’s always better to be safe than sorry. Even if you are in remission, it’s always good knowing where your insurance is good at and being aware of any out-of-network costs. Always have contact information for your doctor, pharmacy, and any necessary drug information with you–you’ll never know when you’ll need it! A good trip can turn into a horrible one fast if you start having symptoms and you’re unable to get the care you need–Always error on the side of being too prepared. I always save all important contact information into my phone, and I carry a Medical ID card in my wallet that explains my conditions and necessary medications.

4) Don’t Over Do It

If you are like me, you all about having fun and doing much as possible! While this may sound good in concept, sometimes we can get too tired and stressed from traveling which could cause a relapse. It’s a good idea to set realistic expectations on what all you’ll be able to accomplish while on vacation. One of my favorite vacations is taking cruise! If you’ve been on a cruise, you know these are 24/7 non-stop vacations with something always going on. I always find the activities going on that look fun to be and do them while always mixing in a little rest and relaxation. You can still have an amazing time on vacation and do almost anything, but just be careful to listen to your body. If your body needs a break, give it one! If you overdo it you’ll probably end up regretting, so just take it easy and have a great vacation!

5) Have Fun

The most important thing to remember is to have fun! You’re on vacation, free from all the stresses and cares of life. Take it easy and enjoy yourself! You probably deserve a nice break from everything going on, and a vacation is a great way to come back relaxed and refreshed. Don’t worry about all the little details, just relax and have a care-free vacation! A break from all the stresses of life is probably just what your body needed! This is your time to kick back and relax while taking care of yourself! Enjoy!

Comment your helpful travel tips and vacation memories below! Thanks for reading 🙂

 

Daily Motivational Quotes

“Whether it’s ten minutes or ten miles, it’s worth it!” -Quote on the wall from my local gym

I can’t tell you how much I like this quote! It’s applicable to not only working out, but pretty much everything in life.

If you want to become better at something, whether it’s doing well in school, your career, learning a new language, improving relationships, etc. you have to put work into it!

Obviously, the more time you can commit to something the better the results will be, but success isn’t built in one day! It takes time to get there! If you can only spend ten minutes working and improving something, that’s a lot better than not spending any time on it at all.

Set a goal and gradually work up to it. You can do it!

Comment and let me know what goals you are working on 🙂

When Life Changed–Life With Chronic Disease

First Diagnoses–When I was first diagnosed with multiple chronic diseases.

They say the only two things for sure in life are death and taxes. While that is true, over 50% of us will be diagnosed with some sort of chronic health condition.

I was 16 years old when I was diagnosed with Inflammatory Bowel Disease (IBD). Even though I was officially diagnosed with IBD when I was 16, I had experienced minor symptoms of this horrible condition the majority of my life. It wasn’t until my symptoms became so severe that they almost killed me that I received the medical attention I needed to get a proper diagnoses and treatment plan.

I was still in the hospital recovering from my first life threatening IBD flare up when I started to feel an intense pain shooting through my ankles–a multitude of factors including high doses of prednisone and being extremely sick had caused Avascular Necrosis (AVN, dead bone) to develop throughout my ankles. To make matters worse, my ankles and other joints started to swell up so much that it looked like I was half elephant. This was due to the enteropathic arthritis (Arthritis correlated with IBD) my body decided to bless me with.

In a matter of months, a healthy, normal 16 year old had gone from poster book healthy, to chronically ill with 3 chronic health conditions. My life forever changed. I didn’t know anybody else with IBD, I didn’t know what to expect from my health in the future, and I didn’t the best way to manage my new health conditions. I feel like anybody that has a chronic condition or has gone through something similar can relate to these feelings that I felt.

While I struggled at the time to cope with the realities of having 3 chronic health conditions, I can now realize how my adversity with a lot of hard work has transformed into one of my greatest opportunities. I hope you join me in this journey as I share what it’s like to live with chronic health conditions, and share with you helpful tips I wish I knew when I was first diagnosed. Please feel free to share any questions or comments; I’ll always try to answer everything.

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