Living With Arthritis and Necrosis

I have had a lot of people reach out and ask me about what it’s like having arthritis and necrosis in my ankles, and how I manage it on a day-to-day basis. I’ve decided to share a couple “highlights” about living with arthritis and necrosis damaged ankles. (You can see some the current status of my feet and the noise the damage makes here: Damaged Ankles)

In 2009, I was diagnosed with arthritis and necrosis in my ankles and throughout my feet (Avascular Necrosis is also called Osteonecrosis). Specifically, the damage is pretty bad in my talus and metatarsal regions with both feet suffering from collapses which means part of the bone in those areas of literally collapsed down.

My first surgery due to arthritis and necrosis was on my right ankle. I had a bone fragment break off my ankle and a growth actually started growing on the bone fragment! I immediately went to the doctor who referred me to a specialist who then performed an in-office test, and then scheduled me for surgery the very next day. Luckily for me, the growth wasn’t cancerous and the bone fragment was successfully removed. While the Orthopedic surgeon was removing the bone fragment, he also cleaned away additional bone debris which helped alleviate a lot of pain in my joint. I’ve inserted some pictures so you can see the bone fragment and the growth that followed. The growth ultimately started oozing which is why you see some scabbing.

My next surgery involved scoping my left ankle and repairing my big toe metatarsal. I was already suffering from severe pain in my ankle joint due to floating bone debris caused by damage from necrosis and arthritis, when my big toe metatarsal joint literally blew out to the side! My big toe metatarsal was so weak from the damage that it completely fell apart! When it happened, I was walking and I could feel it “pop”, and then tremendous amounts of pain shoot through my foot. For the most, the majority of bone debris was removed.

Unfortunately, it’s only been about three years since that surgery, and I already have significant bone debris in my metatarsal region again. I also have significant bone debris again in both ankle joints. Even normal walking can cause excruciating pain when a piece of floating bone debris lands in just the right spot. If I am having a flare-up or a “bad day” I can experience significant swelling in my ankles and metatarsal region which causes a lot of pain, and severely reduces my mobility.

I consider myself pretty lucky for a couple of reasons: 1) I was diagnosed with necrosis when I was young (19) which increases the possibility of my body being able to somewhat heal itself. 2) I’ve been able to have some of the best treatment including electrical stimulation. I really hope to have stem cell treatment when hopefully it can be approved by insurance, but that seems like to might be a while. 3) I’ve sort of “adapted” to the pain. Most days I only have mild pain, but it’s definitely manageable. Here are a couple of pictures of what my feet look like today 🙂

If you’ve been diagnosed with arthritis and/or necrosis it can be a very tough thing to deal with. However, don’t lose hope! I’m still able to exercise regularly (which actually helps) and do a lot of normal activities. It will be tough for sure, but it’s definitely worth it to keep a positive attitude and keep pushing forward!

Thanks for reading, and if you have any questions feel free to ask!

-Dylan

Advertisements

New Daily Vlogs

A lot of people are interested to know whats it’s like living day-to-day with chronic disease–especially Crohn’s Disease, Arthritis, and Necrosis. I’ve created a YouTube channel where I share short updates about life with chronic disease–everything from doctor visits to general updates on how I’m feeling. I want the videos to be authentic as possible so everything is one-take with absolutely no editing or effects.

Let me know what you think about my Vlog, and if you have any questions you want answered about life with chronic disease.

Check it out here: Life With Crohn’s Disease Vlog

Thanks!

Dealing With Failures

Look, no one likes to focus on negative things, especially when it has to do with failure. Here’s the harsh reality of life–we all fail! Sooner or later it’s going to happen! Everyone fails at some point in their life, but how they react to failure tends to define who are they are.

Whether you fail trying out for sports, asking out your crush, or even for work, failing is nothing to be embarrassed and quit over. Look at Michael Jordan, who was cut from his sophomore, and then went on to be one of, if not the greatest NBA player in history. Okay, so what that’s an example regarding sports. What about real-life? Heard of Steve Jobs? He was fired from his own company after having a disagreement with the board about plans for future growth. I’m pretty sure some of you right now are reading this from an Apple device.

What sets apart amazing people like Michael Jordan and Steve Jobs was how they responded to failure. Instead of being too humiliated to try again, they learned what they did wrong and came back stronger than ever! Every last one of us can learn from our mistakes and failures and become better people!

If you fail, don’t give up. Keep pushing and trying and learn from your mistakes so you don’t make them again. You are smarter and better than you realize.

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

aruba-eagle-beach
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.

carnival-vista
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.

south-beach-no-edit
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!

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!

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!

 

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 🙂