I am so thankful I was brave enough to start sharing my health journey with the world. Sharing has helped me grow as a person and has been far more rewarding than I could have ever imagined. Connecting with other people who simply get what I am going through or who have been through something similar is powerful. I genuinely love listening to other people's stories and learning
I feel empowered when I share and helping others is my true calling. Sharing my journey more openly with my close friends has strengthened our relationships and helped us all grow and become better people.
I am go glad I started going to an in person support group and even more proud that I am now a co-moderator. I am trying to grow our support group so that more IBD warriors can feel supported. Every new face I see is a step in the right direction. The stronger our community and the more comfortable we get in talking about our journeys the more we can help one another. I always leave support group feeling empowered. Empowered I was brave enough to show up to a support group by myself and talk about a very embarrassing disease with strangers. I am proud I now lead this group and am able to make folks feel comfortable sharing. When someone who never speaks at group starts sharing, smiling and laughing, my heart just about explodes. There is so much power in community. Find the community you feel best with. Share your journey, lift others up when they are down and let them support you when you need it most!
For more information on the Atlanta Crohn's & Colitis support group send me an email or direct message on Instagram.
It felt so good to get back to therapy today! My psychologist took the summer off so today was my first day back with her in several months! Wow!! It felt so good to get back to digging inward and personal growth! Since my appointment this morning I have been reflecting and taking mental notes of all the things I want to work through and learn about that only have to do with...ME! Who I am. Who I want to be and how to be the best version of myself!
If you don’t work with a mental health professional that is alright! Just know that when you are ready don’t be scared. Don't let what other people might think or say keep you from doing what is best for your health.
There can be a great deal of stigma around seeking therapy but I want to change that and thus why I share! I find therapy to be one of the most important and most rewarding things I have done for myself! I have seen myself change and become a better version of myself! It’s pretty darn magical when you think about it! I find it especially critical to find a therapist you like and trust if you are living with a chronic illness. My current psychologist has helped me morn the loss of my "normal" body and to accept my chronic condition. These are not easy things to tackle. I lived with IBD for 5 years before I met her and began to really understand the importance of accepting my "new normal" and reality. This important work can be painful and challenging but so very rewarding.
If you are curious about counseling/therapy, give it a try! You might have to shop around to find the right practitioner for you but that is like everything in life: doctors, dating, homes, jobs...you get the idea! Let’s take care of our 🧠’s like we take care of our bodies! 🧠
The Crohn's & Colitis Foundation asked me a few questions about my experience talking to my legislature about the needs of IBD patients and step therapy reform. Here is our Q + A! I highly recommend getting involved. Send me a DM on Instagram if you need encouragement or have questions!
Q: How did the scheduling process go?
A: The scheduling process was simple. I didn’t expect to receive anything beyond an automated email reply much less a personal email and sit down meeting. I was shocked. The Senator’s staff assistant emailed me to set up the day/time of my meeting with the Chief of Staff. This process didn’t take long at all. The staff assistant was polite and professional. When I asked for the location details I was provided with a comprehensive explanation of how to find the office which worked out perfectly on the day of my meeting.
Q: Were the materials provided helpful/what other resources from the foundation did you use?
A: The materials provided by the Crohn’s & Colitis Foundation were instrumental in preparing for my legislative meeting. The foundations infographics and educational handouts helped me gain the confidence I needed to speak to step therapy reform and greater healthcare needs for IBD patients. I browsed several pages of the Crohn’s & Colitis Foundations website prior to my meeting, all of which was helpful and well organized. I talked to other IBD warriors on my social media platform and in my community to gain their insight on what they feel needs to be brought to the legislatures attention. From there I narrowed down talking points with the Crohn’s & Colitis Foundations Education Director a few days prior to my meeting. Having the support from the foundation propelled my excitement to another level, while helping to make my first legislative meeting a success.
Q: How was the meeting?
A: The meeting was totally awesome! To be completely transparent, I was initially extremely nervous and questioned my qualifications for calling this meeting in the first place. Then I remembered, there is no credential more powerful than experience. As an IBD warrior that is what I brought to the table. After the initial introductions we got into the groove of flowing conversation. I began to really enjoy the opportunity to share my story and represent the millions of American’s fighting IBD. I was able to connect with the Chief of Staff and appeal to some of the issues that actually face the senator himself. Making a personal connection really does matter and I was proud to have found a way to do that. We asked that the senator support step therapy reform so that insurance companies cannot tell patients and providers what medications they have to fail before they can take the right medicine for their disease. I asked for research funding to continue so scientists and doctors can discover a cure. I spoke to the rising cost of pharmaceuticals and the toll that takes on those of us living with a chronic illness.
The Chief of Staff said that he would bring the information we presented to the senator for his review and will inform him of our conversation.
Q: How did you feel afterwards and would you recommend other volunteers do the same?
A: My first legislative advocacy meeting left me feeling empowered. I felt stronger, smarter and powerful. I could not be more proud in the moments following this meeting. I kept thinking to myself, “wow I did it. I stood up for myself and the 3.1 million American’s living with IBD.” I continued to smile the entire drive home. I was so excited to tell my Instagram community along with my close friends and loved ones. Standing up for what I believe in and advocating for Crohn’s & Colitis patients across the nation filled my heart with joy. This experience inspired me to continue to stand up for what I know IBD warriors need and to not stop telling my story and the story of others. I want to see improvement in the healthcare system, I cannot sit on the sideline and wait for change to come, I must be the change I want to see.
I highly recommend setting up legislative meetings, advocating and storytelling. Every IBD fighters story is different, we all bring something unique to the table. If we can all share, together we can make a difference in the lives of others.
Moving my body is just as beneficial as some of my medicines. I find moving helps every aspect of my being from my mental and spiritual health to my physical body inside and out. I schedule movement into my day by signing up for classes ahead of time and by wearing my Fitbit which helps remind me to get out of my office chair to move. I feel so much better when I get moving. I do listen to my body the best I can so when I am feeling unwell I gage whether or not it is best to take a class, walk, stretch or rest. On days I don't feel great I still try to get moving. Many times I feel significantly better once I have exercised and released endorphins!
If I am in an extremely tough flare my body needs more rest then movement. Stretching and walking is great but with the loss of so much liquid and blood I make sure I don't overdo myself. Plus bad flares can leave me with barely enough energy to get from the couch to the toilet and back. Listen to your body folks. It speaks to us every day!
Living with an invisible illness has pro's and con's. The great part is that on the outside you look normal and even healthy at times. Many times there are no physical indications on the exterior that would give anyone the idea that you are battling a chronic disease. I am very thankful I look "normal!" However, out of sight out of mind can be a real thing. People are not always understanding of what a person is going through if they can't literally see what is wrong with you. If I had crutches or was in a wheel chair people might let me cut line or help me in ways they don't as I look the way I do. Don't get me wrong I am so thankful I look the way I do and that my body serves me the way it does. I am thankful for so much. But people can't see my guts. They can't see my anxiety. They can't see the pain or the urgency and the fear.
This is where compassion comes in. I am beyond compassionate and I don't need to see someone is visibly ill for me to be compassionate towards them. IBD had taught me this.
Most people don't have compassion for something they can't see in front of them. They are not quick to ask if you need to use the restroom first. They aren't quick to lend a hand or understand if you need to cancel plans last minute. Unless of course you are battling something yourself and you have grown to be a compassionate person. IBD has taught me so much and one lesson I have learned is to be more compassionate and remind myself that I have NO IDEA what others are going through. Real talk though. We do not have any clue what someone else is battling so we must be compassionate towards one another including ourselves.
My advice for living life with an invisible illness is build a support group that is compassionate and caring. Surround yourself with people who are understanding and let the ones that aren't go. Advocate for yourself and stand up for what you need. Be kind to others and to yourself. We have to give ourselves some slack. It isn't easy being different or feeling burdensome to others.
Love yourself and your tribe and don't stop fighting for what you need for your body and health. Nobody else can speak to how your feel like you can so fight like hell!
It is time we normalize talking about poop. If you really think about it our bowel movements are a way to tell what is going on in our bodies much like vital signs and menstrual cycles.
We learn at a young age that everyone poops in awesome books like: Everybody Poops. But then we get learn to be ashamed of what happens in the bathroom. Some people will shame, blame or humiliate us for doing what our bodies are supposed to do daily: poop! Where that cruelty comes from I have no idea and I wish I knew how to stop it!
I get beyond heated when I hear people making fun of people based on their poop habits, smells, noises or anything related. This is uncalled for and in my opinion a form of bullying. Pooping isn't sexy or cute but it is important and if you have a gut disease where pooping can be scary and unpleasant you likely understand what I am talking about. This includes people making fun of smelly farts or fart noises and includes comments being made in public restrooms. Everyone knows it smells lady you don't need to embarrass someone that is likely hurting more than you. KEEP IT TO YOURSELF!!!!
Getting comfortable talking about your poop at a minimum with your medical provider is the first place to start. If your provider doesn't know what is going on then they can't help you. Then if you are feeling brave when you feel the time is right talk about it with your friends, family and significant others. Sometimes I ask my boyfriend about his poop experiences because he doesn't have IBD. I might ask something like, "does your abdomen hurt after you poop?" I am asking because that happens to me and I wanted to know if that happens to people without gut issues. The answer was no by the way.
Other times poop can come up in conversation when it comes to what I will or will not eat. Especially when I am out of town there are certain foods I will avoid for I am afraid they will give me diarrhea. I am way more open about telling people this now than I was when I was first diagnosed so don't expect to get comfy with poop talk overnight. Everyone poops and most everyone has likely experienced diarrhea in their life time so I give people the truth. Not only does that get folks to stop questioning my decision making but maybe it will help them relate and learn more about IBD.
So next time poop comes up in a conversation...don't be afraid to share your journey with pooping. You just might help someone else with out even knowing it! Happy pooping.
Moving my body is an important part of my IBD self care. I find exercise helps me by:
I have always been a pretty active person. My parents started me in sports like soccer, basketball and softball as a little girl and I continued playing sports through most of high school. I was active in a very different way in college with regular gym sessions and the occasional intramural sports game. In college I walked everywhere. To class, to friends houses, to shops and of course to the bars. After moving to Atlanta where you have to drive everywhere I still continued to frequent the gym. I had a few different personal trainers during my early years in Atlanta. In the last 3 years I have been loving group fitness. Group fitness is one of my favorite ways to move my body. The sense of community is amazing and the work outs are empowering. I also think it takes a lot of strength to grow and find yourself while working out among others. So much can be learned Barre and yoga are my go to for group fitness. Sometimes I venture to spin or pilates as I enjoy variety and trying new fitness studios.
It can be hard to exercise with living with IBD. Running for instance I find so hard. Hard on my knees and hard to breathe. Not to mention running makes me have to poop. Sometimes this is welcomed but the fear of not making it to the potty certainly kept me from running much for over a year. I am slowly starting to do more of it and the plan is always to get back home so I can use my own restroom upon ending a jog. Depending on how I am feeling a simple walk can get my bowels moving, yet other times, not at all.
What I love about yoga sculpt and barre3 is that they are both low impact on the joints. Any moves that are higher impact have effective modifications to keep the knees and joints safe. I hypothesis that these exercising have less of a bowel movement trigger because they are low impact and include less jostling of my insides. Sometimes all I want is a bowel movement and there are other times when all I want is to stay away from the toilet. Regardless, exercise always makes me feel better physically and mentally.
I feel physically healthier, happier, more balanced and ready to take on the world when exercise is part of my regular health routine. When I am on vacation and eating differently and not exercising so much I am more tired, more crampy, more bloated and generally feeling less well then when I am getting regular exercise. I noticed this a few weeks ago when I returned from an amazing trip.
Even if all you can muster up is some basic stretching or a short walk. Give it a try. It could help you in your IBD fight.
Meet nugget. Nugget is more than an adorable kitty sitting in a pineapple house. He is part of my IBD support system. Nugget is someone to talk to when nobody else is around. He listens to my worries and rubs against my legs when I am on the potty. Nugget cuddles with me more so on his own time but his purring helps to reduce my anxiety and bring me back down to earth.
One moment I remember was last fall after my follow-up GI appointment post sigmoidoscopy I came home in tears. I had learned I was still inflamed with active colitis and the inflammation was encroaching on my transverse colon. I was so bummed out. My provider started talking about stepping up to a stronger therapy called a biologic. I had put in so much effort to try and feel well. I had been on so many different diets along with, acupuncture, getting enough sleep, resting, taking naps, exercising, taking supplements, seeing many different doctors and trying so darn hard to be well. I felt defeated. I was sad. I let myself have that day to mourn this reality and to cry. The first thing I did when I got home was get on the floor with this guy. I pet nugget and cried until I couldn't cry anymore. Nugget was there for me. I am thankful. I am also thankful for the time I was prepping for that sigmoidoscopy that revealed that I was inflamed. I was in a great deal of pain trying to administer the fleet enemas as prescribed and nugget was with me on the bathroom floor looking cute as always.
Don't forget our furry friends are a part of our support system.
As an aside I adopted nugget when he was only a month old from the Atlanta Humane Society. He was 5 lbs at his 2 month check up and now is a fluffy 17 lbs. I love him more every day.
Advocacy can mean many things. To me advocacy means standing up for a cause, spreading awareness, sharing my story and inspiring others to do the same. Making strides towards system wide change and not giving up hope. I consider myself an IBD advocate because I am sharing my story and volunteering my time to help IBD warriors feel less alone and better manage their disease. I connect those that I can to others who might be able to help them and just listen when I can't.
Her are a few ways I advocate: