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!

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

Tips on using copay cards to lower your medical expenses.

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!

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!

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.

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/