Creating A Schedule To Live Healthier

Living with a chronic disease is difficult. Living with a chronic disease, working a full-time job, keeping a relationship healthy, having a time to see friends, and everything else life requires is near impossible. It’s really easy to get overwhelmed by all of your time demands, which in turn leads to more stress, which leads to flare-ups and feeling sicker. Managing your time is crucial to keep yourself healthy. Here is an example of a schedule I make with some helpful steps I’ve learned over the years of living with a chronic disease:

1. Create a Schedule, and KEEP with it! – It’s easy to create a schedule, but it’s even more challenging to keep to it. I usually have a general plan created the first of each week. My general week plan usually looks like something like this:
   1. 6:30 AM- Wake up and get ready (breakfast, morning emails, etc)
   2. 8:00-4:00-PM work my day job while making sure lunch is fit somewhere in between

Usually after work I have some flexibility to get some things done of my choosing like seeing my GF, working on MEDI+SWARM, going to the gym, and getting some time to relax. I know that getting at least 8 hours of sleep is crucial to maintaining my health. That puts my bedtime at 10:30 PM, leaving me with 6.5 hours to things that I want. I can have some flexibility on the order I do these items, so instead of saying the actual time I will be doing things, I plan on how much time I can spend on doing each item, like this:

1. MEDI+SWARM work- approx 1-2 hours
2. Gym- approx.1 hour
3. GF/Relax/Dinner- 3 hours
4. Everything else- .5 hr

Granted, I unfortunately don’t see my GF everyday so that gives me extra time to do various tasks and errands. I always make sure to eat dinner somewhere in between and to have regular snacks.

Whenever I create a schedule and list the tasks I need to complete I can usually always see time I can use to get them done. I know everyone’s schedule has different demands and availability, but always try to make some time for you to de-stress and relax.

Let me know what you think about my schedule, and what you do to manage your time 😊

Redefining The Future of Healthcare

One of my passions in life is helping to create MEDI+SWARM. MEDI+SWARM is a social health network that connects people with similar health conditions into communities to easily allow them to see top-rated solutions for their condition, ask questions and get real answers, and to post helpful ideas. While there are quite a few “social health networks” MEDI+SWARM is unique in that it leverages modern technology like machine learning to actually learn from users and improve their health. For example, if in a community of Crohn’s Disease and Arthritis, a user says that by eating salmon it reduces their joint pain and Crohn’s Disease symptoms, and other users agree with this, then the suggestion of eating salmon to reduce joint pain and Crohn’s Disease symptoms is analyzed by our learning machine. Our learning machine will then analyze that statement to realize and identify the components in salmon to see if there’s something known to reduce these symptoms. Bingo! The system will realize Omega 3’s and the fatty acids in salmon are known to reduce these symptoms. This information is realized back to the user and to researchers. This is just a simple example of what the learning machine can do! Just imagine the information it can learn from people who actually live with chronic disease on a day-to-day basis.

Another incredible feature we are working on is the capability of using IBM Watson Health to help answer questions asked by users. Imagine the ability to ask any and all of your health questions to IBM Watson Health, who will then reference medical journals and other information to bring you a real answer. It’s like having the power of a physician at your fingertips!

While MEDI+SWARM is still in development we hope to launch into our Beta soon. If you visit the site today you’ll notice the site isn’t quite ready yet. We are working diligently to bring MEDI+SWARM’s Beta MVP to production soon. If you have any feedback on our planned features, or something you would like to see happen, please feel free to share your feedback as it’s much appreciated.

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.

What the growth looked like after oozing

Bone fragment and growth as it begun to ooze.

First stage of growth with a lot of swelling.

Bone fragment and growth

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 🙂

You can see the metatarsal on my left foot is significantly thicker than that of my right foot.

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

Health Insurance–Turning the Big 26

Ahh, it’s been a minute since I’ve blogged and so much has happened! From surgery to vacation there’s a lot of catching up that needs to be done. However, the most pressing issue is getting new health insurance as I’m turning 26 in July.
As some of you know I’m self-employed, so there’s no work health plan for me. Now I get to deal with finding a broker to sell me insurance $$$$ as the open enrollment period is over. If you have any tips on getting an affordable, yet good health plan let me know.
I’ll keep you posted as I go on a search to find a plan that works with me—stay tuned!

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!

25th Birthday–New Goals

Welp. I’m officially in my mid-twenties now. Yesterday, July 2, was my 25^th 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!

 

2. 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!

How To Beat Crohn’s Disease in Five Steps:

1. You Can’t Cure Crohn’s Disease- Unfortunately, Crohn’s disease is an incurable, chronic condition which means it really can’t be “beat”. However, you can manage your Crohn’s disease and put it into remission- remission is a state with little to no symptoms and it’s almost like being cured. If anyone tries to sell you a magical supplement, holistic treatment plan, special diet plan, etc., that will cure your Crohn’s disease you should run the other way! There are substances and supplements that can help alleviate symptoms and help your body heal, but they can’t cure I’ll write another post about my experiences with different supplements like Redmond’s Clay, Chinese healing oil, and etc.

 

2. Manage Stress- Stress is a huge exacerbator of Crohn’s disease symptoms, and it’s one of the hardest things to manage. When you start having a flare up it’s all too easy to start worrying about missing school and work. On top of that, you can start to worry about paying for your medical bills. The stress of worrying about all of these things can worsen your symptoms and make it harder to recover. You can even be in remission and extreme stress can trigger a flare up! Finding strategies to manage your stress is crucial to beating Crohn’s Disease!

 

3. Eat Healthy- When your body is dealing with Crohn’s disease it’s imperative that your body has the proper nutrition so that you can start to heal. It’s common to be anemic and malnourished when going through a Crohn’s disease flare-up which makes it even harder for you to start to get healthy again. Each person’s body reacts differently to different foods so it’s important to track what you eat and how your body reacts. It’s common for people with Crohn’s disease to generally have adverse side effects to raw vegetables, nuts, popcorn, etc.

 

4. Get Exercise and Plenty of Rest- Getting exercise while experiencing a flare up is one of the hardest things—your body is exhausted, you have literally zero energy, and you are weaker than ever. However, simple exercise can help stimulate healing and help you recover faster, but be extra careful not to overdo it! Too much exercise while in flare up can exacerbate your flare-up. While it’s important to get exercise, it’s just as important to get plenty of rest! Your body can only start to heal when you are have plenty of rest. Many experts recommending getting at least 8-10 hours of sleep when you have a flare up.

 

5. Follow Your Treatment Plan- It’s more than likely that your doctor will prescribe medications to help you manage your Crohn’s Disease. I can’t stress how important it is to follow the treatment plan your doctor recommends! If you have any concerns about your medications or dosage, talk to your doctor about it! Most of the time there are answers to your concerns if you just talk to your doctor about it. Never skip doses, or take more medication than prescribed without first talking with your doctor. Don’t forget your GI doctor has at least 14 years of schooling and experience—most of the time they know what they are doing!

 

Follow these 5 steps and hopefully before you know it you’ll find yourself in remission!

Exploring In Italy

I’ll be the first to admit that I’m a travel addict. There is nothing quite like the thrill of traveling to a new destination and experiencing something totally different! This past week I had the opportunity to fly to Rome and tour Italy. It was an amazing experience and definitely a trip of a lifetime.

My week started out in Rome, Italy, After flying into Leonardo da Vinci Airport in Fiumicino, a suburb of Rome, I quickly made my way up to Rome to check into my Airbnb and take a quick nap. It’s really important to take care of your body as much as possible when traveling, especially after flying for 15 hours! After resting up for a bit, it was time to explore!

I only had a couple of days in each city before moving on to the next one so my days were packed with activities. If you can name an attraction in Rome, I saw it! From the Vatican, to the Trevi Fountain, to the Colosseum, I saw it all! 

Traveling with Chronic Disease can really take a toll on your body, especially when your days are long and packed with adventure. In order to combat fatigue and to make sure my body was being taken care of, I made sure to buy and drink lots of water whenever possible, ensure I was still taking all of  my medications and supplements and at the right times, and to make sure I ate as healthy as possible. Doing these relatively small things helped make sure my trip went as smoothly as possible!

After finishing in Rome, I took a high speed train to Venice. After exploring Venice it now makes sense to me why Marco Polo grew up to be an explorer! Venice is a beautiful city that is an absolute maze! Even the most savvy travelers get lost in Venice. Highlights of Venice included exploring the city by motorboat and visiting St. Mark’s Square. Venice is a city that everybody should visit at least once in their lifetime.

Florence was the next city I visited by taking high speed train. Italy has an amazing network of high speed trains that are extremely easy and convenient to travel by. Florence in my opinion is the ‘hipster’ city of Italy. Florence is world-renowned for artwork and history. Visiting the Duomo and climbing the bell tower was a great way to get exercise and an amazing view of Florence!

After Florence I made my way to Pisa again via high speed train. The train to Pisa is a quick 45 minute ride. I was so exhausted from exploring and jet lag, that I instantly fell asleep as soon as I sat down for the train ride. My nap was much needed, as I was able to actually go inside the Leaning Tower of Pisa and climb to the top! This was such a cool experience as the marble floors are worn from years of use, and you can really feel the tower lean as you climb to the top!

Naples was my next destination after visiting Pisa. I took a Frecciarossa high speed train that went 180 mph and got me to Naples in about three hours. Naples is a stunning coastal city that is close to Pompeii and the Amalfi Coast, both of which I was able to visit. It’s a little bit eerie and somber visiting the ruins at Pompeii. The Amalfi Coast which includes Positano, Sorrento, and Amalfi, to name a few cities, is absolutely beautiful! 

Sadly, it was time for me to return to Fiumicino for my flight home. I took another high speed train and arrived back in Fiumicino in about an hour. I’m a huge beach lover so of course I had to visit Ostia Beach. Unfortunately, it was still a little too cold to really enjoy the beach, but it was still fun to walk along the shore and listen to artists playing music on the pier. 

My flight home was definitely challenging. My first flight departing Rome was delayed due to a late crew member and a late incoming flight. Consequently my flight was delayed about an hour. This delay made me miss my connecting flight in Dulles Airport in Washington DC. If you haven’t seen the news, United and Delta had hundreds of cancelled flights and delays this past weekend which resulted in there being no available flights home. Instead of arriving home Friday night, United wanted to fly me home Sunday evening. I’ll share another blog piece on how I was able to get a flight home on Friday instead of Sunday.

Overall, I had an amazing experience exploring Italy. Italy is such a vibrant country with a rich history. If you get the opportunity you definitely need to check it out!

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.

How I Lowered My Infusion Bill from $2,692 down to $5

Nothing is more stressful than opening a bill from the hospital and seeing that your life-saving infusion is going to cost $2,692 AFTER insurance—let’s just say it can cause a few gray hairs to come out of nowhere!

After trying Remicade (developed antibodies), Humira (body didn’t respond), Remicade again, Simponi (developed antibodies), I’m now taking Entyvio to which my body is responding very well to. I’ve been able to achieve clinical remission and I’m no longer steroid dependent. I’d say this is cause for celebration!

However, there is a downside—there are only two infusion centers in the state of Utah that currently provide Entyvio infusions and only one is covered by my insurance. The total for one infusion? $17,890.80. The average person on Entyvio requires eight infusions per year. That means over $143,126 in bills for one year for the average person on Entyvio. I hope you are making more money than I am, because there is no way the average person can come even close to affording $143,126 in hospital bills each year. Luckily, after insurance my bill is only $2,692.44 which isn’t horrible considering my max out-of-pocket is $9,000 for the year. $9,000 is still pretty steep, but it’s better than not having insurance.

What a lot of consumers don’t know is the majority of drug manufacturers provide financial assistance. For example, Entyvio offers Entvyio Connect, Entyvio’s Financial Assistance program, which limits caps the drug price to the consumer to only $5 per dose. My explanation of benefits from my insurance, which breaks down the hospital bill into line items and explains how much the insurance company will cover, shows that the pre-infusion medication of Benadryl and IV Steroid cost $139, IV Supplies cost $537, Laboratory Work $149.80, and Entyvio Drug expense of $17,065. My insurance covered all of the pre-infusion medication, laboratory work, majority of the Entyvio drug expense leaving me with a bill of $2,692.44.

Since I’m enrolled in the Entyvio Connect program my bill has been further reduced to just $5! That’s a savings of over 99% off my original bill with and without insurance. It really does a make difference using a co-pay card like the Entyvio Connect program to help lower your medical expenses. If you are taking a medication it is worth checking to see if the drug manufacturer offers a financial assistance program. These programs can help you save some serious money over the long-run.

Let me know your favorite ways to help lower your medical bills! Good luck and take care of your health!