Tag: #mediswarm

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

Using MEDI+SWARM’s machine learning to better healthcare outcomes.

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.

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

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!

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 🙂

 

5 Tips For Exercising with Crohn’s Disease and Arthritis

Have Arthritis and/or Crohn’s Disease? Here are 5 Helpful Tips For Working Out

“A wise man should consider that health is the greatest of human blessings, and learn how by his own thought to derive benefit from his illnesses.” 
― Hippocrates 

While Crohn’s Disease and Arthritis have no known cures, there are several benefits that exercising regularly can provide for someone with chronic health conditions. Here are my top 5 tips for exercising with Crohn’s Disease and Arthritis:

1. Check With Your Doctor Before You Start

-Before you start your new workout regimen always check with your doctor to make sure you are healthy enough for exercise. I can’t emphasize how important this is, as you might be on a medication that makes you prone to lightheaded and/or dizziness which could possibly lead to a serious injury. Or maybe your body just might not be ‘healthy’ enough yet to start working out. Don’t stress over this and work with your doctor and medical team to create a target date to where you can begin a workout regimen. 

Remember; always listen to your doctor’s advice. It’s not worth working out if it could further worsen your health.   

2. Always Listen To Your Body!

-Now that you’ve checked with your doctor and you’re all clear to start working out, it’s important to listen to your body as you work out. If something hurts or doesn’t feel right then don’t do it! It’s important to push yourself, but be careful not to overdo it! 

If you are like me and have severe arthritis in your ankles and other joints, then it’s probably best if you stay off of the treadmill and away from other high-impact workouts. There is almost always a substitute for a high-impact workout. For example, if you are working on cardio instead of running/jogging/walking on a treadmill try swimming. Swimming is a great cardio workout that will target your entire body while building endurance! If getting in the pool isn’t your thing, try cycling. Just be careful not to add too much resistance!

3. Work Hard, But Work Smart. Your Body Needs It

-Unfortunately, the odds are pretty high that your body isn’t in the best shape due to your chronic health conditions. Don’t worry, remember Rome wasn’t built in a day and neither will your body be. If your body allows it try your best to workout 3x-5x per week. Always allow your body sufficient time to rest. 

I’ve found the best way to start my workout is by doing a light cardio warm up (usually cycling). This allows my body to get loose and ready for a more strenuous workout. I always vary my workout so I don’t work out the same body group more than 1x per week. This lets my body rest and reduces my chances for injury. For example, on Monday’s I will work out my chest muscle group. It’s easy to find workouts modified for people with Arthritis and/or Crohn’s by doing a simple Google search. Or you can talk to your gym and find a personal trainer who has experience helping people with Crohn’s Disease and/or Arthritis get a safe and effective workout.

Since you’re now burning up more calories, carbohydrates, and etc. it’s important your nutrition is helping you achieve what you want to accomplish. In addition to eating healthy, consider adding a protein supplement to help your body recover. I use Nature’s Best Isopure Natural Chocolate, it’s free from artificial sweeteners, gluten, and lactose all while providing 50 grams of protein, amino acids, and an amazing taste. If you’re interested, here’s a link describing the protein: http://www.theisopurecompany.com/product/isopurenatural.html As always, talk to your doctor before adding any nutritional supplements. 

4. Go Light And Easy On Flare Up Days

It’s given that some days will be harder than others. If you start having a flare up it’s important to take it easy and not overdo it at the gym. If you’re having a severe flare up then it’s probably best to stay at home and rest instead of trying to muscle out a workout. 

If you are feeling well enough to go to the gym while have a mild flare up, make sure to modify your workout so it doesn’t exacerbate your flare up. For example, if you usually do 30 minutes of cardio, consider reducing your cardio to only 10 minutes of light cardio. If you like to lift weights, use a much lighter weight than you are supposed to and increase the repetitions. 

If you’re having an arthritis flare up, make sure you are doing a workout that will not cause damage to your joints.

5. Enjoy The Workout “High”

It’s not easy working out and sticking to a regimen, but as you do make sure you take the time to enjoy it. Measure your progress and celebrate it! If you lose an inch off your waistline or gain an inch around your biceps make sure you acknowledge the progress you’re making! 

As you start to work out every day you should start to notice both physical and emotional benefits. After working out your body releases endorphins which make you feel great! After a couple of weeks at the gym you’ll start notice small changes: like you’re stronger, you have more energy, and etc.! As you continue working out your body will continue getting stronger and better each day! 

An under-rated benefit of going to the gym on a continuous basis is that you’re likely to meet other people who might have the same conditions as you and are also trying to become healthier. It’s always helpful to have friends and support group that can help motivate you to reach your goals, especially when you’re having an off-day. Make friends and help each other achieve your respective goals. Studies show working out with a friend can actually increase the likelihood of you reaching your goals while reducing the chances you’ll quit to just 6.3%* So go ahead, make friends and achieve your goals!

If you have a helpful tip for working out with Crohn’s Disease and/or Arthritis let me know in the comments. If there’s something more you would like to know about my workout routine, let me know and I’ll do my best to answer it. As always this blog is not intended for medical advice. Always consult with your doctor before changing your lifestyle. Thanks for reading, and leave me a comment and let me know what you think!

 *http://blog.codyapp.com/2013/07/30/workout-partner-motivation-exercises/

 

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.