As more and more discussions happen around the repeal of the Affordable Care Act (Obamacare), it’s important to keep perspective of what the ACA did to benefit patients with chronic illnesses. I stand with many other Americans in favor of keeping and fixing Obamacare. We aren’t delusional. We know it’s not perfect. But it is the most progressive reform patients with chronic illnesses have seen, maybe in their lifetime. Is it fair that we lose the benefits that were granted to us through this piece of legislation?
I’m falling deaf ears, aren’t I?
Well, if Congress refuses to fix, let’s urge Congress to simultaneously pass a suitable replacement that will maintain insurance coverage. Specifically:
Stability in coverage be maintained by accompanying any repeal effort with a replacement that meets the needs of the 117 million Americans living with one or more chronic illnesses;
Discrimination against patients with pre-existing conditions continues to be prohibited;
Young adults can remain on their parent’s insurance until age 26;
Out-of-pocket spending is limited and lifetime annual caps are prohibited; and
Insurance coverage meet certain design standards to combat discrimination and ensure that patients have access to the treatments, services, and provider network they need.
Use your voices! Please call your members of Congress and share this information with them. It will take 15 minutes of your day, but will benefit patients like me for a lifetime.
We just finished another successful Crohn’s & Colitis Awareness Week. I had the pleasure of joining amazing patients in Washington, DC to share my story of living with Crohn’s disease. I met with health aids responsible for working with members of Congress to protect the rights of patients and ensure adequate funding is set aside for IBD research. My eyes were opened to this wide world of IBD patient advocacy. I realized my journey as an IBD advocate began many years ago; I also realized becoming an advocate is as simple as sharing your story to benefit as many patients as possible.
As a child diagnosed at age seven, I’ve had many years to come to terms with my disease. However, many of those years were spent keeping my disease fairly close to my chest. It’s not that I hid my disease – those close to me were familiar with my health issues. But it was my disease to deal with. I didn’t want to burden others with the barrage of symptoms, the bad days, the doctor visits.
The turning point
It wasn’t until I became sick in 2006 that I became more vocal. I was so sick that I couldn’t hide the severity of symptoms from my friends, my classmates, my professors, even complete strangers. Twenty years old and I completely relied on a walker, suffered from severe skin issues, eye issues, joint pain. My personal relationships were strained because I needed a caregiver. My grades were plummeting because I couldn’t attend class (which is a huge issue when you’re studying for your master’s degree).
I had to speak up. I had to explain that my life was being controlled by Crohn’s – I had doctor’s to visit, medications to pick up, physical therapy sessions to attend. No one was going to understand until I made it clear that I have special circumstances. After this, I refused to hide my disease.
I found being upfront about my disease made issues easier to deal with if they popped up (which they usually do). I was vocal about my disease at my first job after graduate school (not during the interview, for obvious reasons) and I found that most people wanted to know more, wanted to know how they can support me. People would send information just in case I wasn’t aware or ask me how I’m feeling “these days.” These simple gestures spoke more to me than anything.
It’s about millions of patients
I started hearing more stories, demonstrating how widespread IBD really is. “Oh, my aunt has UC” or “I have a friend with Crohn’s” became more and more common. I would share my own story and the responses I received were incredible. All of a sudden, I was helping people understand how they can support their family members or their friends.
At the same time, I joined Team Challenge and became more involved with CCFA. All of a sudden I was surrounded by dozens of incredible people just like me but many weren’t comfortable sharing their story. They were recently diagnosed, new to this IBD world, or they had experienced injustices, causing them to close this aspect of their lives to others.
I can be their voice.
It hit me like a bolt of lighting. Even if I can’t directly help them achieve remission, I can help them come to terms with their disease. I can be their voice. I can offer support, provide advice, share a hug, lend a hand. I can educate myself about patient rights. I can learn what research efforts are underway and how funding is determined. I can call my Congress representatives and have a voice for all patients living in Colorado. I can put my name on those petitions to create more transparency within insurance companies.
If my time in Washington taught me anything, it’s that our elected officials are there to represent the people they serve. And I am one of those people and I can help represent the thousands of others just like me. Since coming home from our day of advocacy, I connected personally with my representative and my two senators. I am engaging in the conversations happening on their social media profiles. I am becoming a squeaky wheel and when we have enough squeaky wheels, we’re going to be incredible difficult to ignore.
Now is the time. All you have to do to get started is raise your voice. Eventually the paths to larger support will make themselves evident if you just keep your eyes and ears open.
Nine hours of sleep not enough? How about nine hours plus two naps a day? Nope, still not enough. Fatigue might be the WORST of the Crohn’s symptoms. I can handle lots of poops. I can take meds to help with the pain. There is nothing I can do to help the fatigue.
I struggle walking up the steps to go to the bathroom.
I struggle walking my dog around the block.
I struggle focusing at work and completing my ever-growing gotta get it done list.
I headed to Crossfit on Wednesday knowing it would take everything I had to finish the workout. The workout was a grinder – 5 rounds of 60 double unders, 40 squats and 20 calories on the rower.
I made it through two rounds. TWO rounds. And then I fell apart. Not to the point where I could just take a breather, but almost in tears because I have nothing left to give. You know what happens next. Crying while working out is impossible. Hyperventilation ensues on the row machine. One pull, breath, two pulls, get your crap together woman, one pull, dear god will this be over soon?
Finally I collect myself, only making a fool of myself to the coach, and continue on with the workout. It takes me almost 28 minutes but I finished. And not last, I might add.
Crohn’s may interrupt my life, but it won’t defeat me.
It was a beautiful spring day when the monsters came, their arrival signaling the start to a very long and difficult weekend. With sharpened claws and bared teeth, they slowly started to rip away at my insides – small pokes growing into a full assault until I didn’t I could keep them at bay any longer. Finally, crawling, I made my way into the safe house, happy to see it free of other visitors. With every last ounce of might I could muster, I vanquished the monsters but not before they had left me wounded and defeated, slowing retreating back to the outside world where my stadium seat and husband were waiting.
I’m one of the few lucky patients that rarely experience urgency issues or painful diarrhea associated wtih Crohn’s disease. The unfortunate drawback is that I typically experience symptoms outside of the gut – arthritis pain being the most common. When joint pain is the worst of my problems, I can usually make it through life without many complaints
But lately these monsters have been making more frequent visits into my universe. Their sharp teeth and claws tearing away at my insides creating some of the worst urgency issues I’ve ever experienced with only one possible outcome.
During the game my mind wondered to this latest event. I had went for a 15 mile bike ride earlier that day – what if the monsters found me at the side of Platte River? What if I have to make a bee-line to the restrooms that are more than a dozen rows and a section away? What other precarious situations will I find myself in when another emergency pops up?
This is, in my opinion, one of the worst things about having Crohn’s disease. As hard as you try, there is always the chance it will rob you of experiences and there is nothing you can say or do to change that. I don’t like when Crohn’s starts to dictate my daily planner. I hate when I have to succumb to the will of those monsters.
Right now the best I can do is to carry the necessary reinforcements with me at all times and try to avoid any foods I know will cause undue stress. Maybe it is time to really restrict my diet. Because these monsters need to stay away.
In the spirit of Crohn’s & Colitis Awareness Week, I thought it would be fun to showcase what I, as a patient, look like with IBD. There is a stigma around these diseases that patients don’t leave their houses because they can’t be too far from a bathroom. We’re sometimes conveyed as hermits, just surviving the best we know how. Living day to day in misery (and even the use of the word living is a stretch for some).
There is no doubt – Crohn’s disease has taken many things from me. Especially during my childhood when I had to sit in the shade during recess because the medication and long exposure to sun caused blisters or when I couldn’t go to school for weeks or months at a time because of the pain and symptoms. (I was such a nerd too; I LOVED school as a kid. Well, and as an adult.)
However, there is no doubt in my mind that Crohn’s disease has made me so much stronger and passionate and caring and determined. I shared my story yesterday and a dear friend of mind said I was “the toughest chic” she knows. I hear these things and can’t bring myself to believe them. I don’t feel like I’m doing anything especially awesome to make me strong, or tough, or determined. But then I realize that while I just see my life as what it is, other people see the battle I have to live through. I’ve realized through the years that I can HELP people, that I can INSPIRE people. That’s the best gift I can leave behind.
Of course, actions speak louder than words and I know that portraying a happy, successful, positive image is one of the best way to help other patients and their families.
So with that, here’s what the face of IBD can look like. Obviously my point is that having an incurable disease doesn’t mean you don’t get to live your dream. (And my life is kind of awesome)