The Story Behind the Photo

I am reposting this picture. Hopefully you have been following along with my journey as a participant in the #BioExperience on my social media accounts, if not this is somewhat a continuation. So you may need to read those first. I will try to do a brief recap, but it probably won't be brief.

The day before this picture was taken I had had a terrible, horrible, no good, very bad day, mentally.

I had the unique opportunity to tour Janssen Biotech, Inc. manufacturing plant as well as have a tour of the Janssen Research Labs. These tours were a part of the #BioExperience Program. As a part of the #BioExperience I got a sneak peek and firsthand look into the work Janssen Biotech, Inc. is doing in current and future medicinal therapies for Crohn's Disease, Ulcerative Colitis, and other auto-immune conditions. I was invited to learn about and get a better understanding of new medicines becoming available soon for Crohn's Disease and Ulcerative Colitis.I participated on the #BioExperience with other IBD advocates. If you don't know, I have an undergraduate degree in Biology, so these tours took me back, reminded me of college. I was a research assistant in school and spent hours in the research lab. Yes, I am a nerd. The scientist in me was excited! The patient advocate in me was ecstatic! But my body fought hard to take that excitement from me. The actual trip/tour was physically demanding for me. I have a hard time standing up and sitting down for prolonged periods of time. So I was struggling. I tried very hard to hide my pain and put on a brave face but I couldn’t hide it from people that recognize the same hurt and pain I experience. I started crying. Every time someone asked me if I was okay, I started crying more.

Advocacy is something that I absolutely love doing but physically, I thought, can I do this? As my body fought me during the tour, I started to question everything. I was in physical pain and as this sometimes happens when in physical pain I was getting discouraged mentally. I was frustrated for so many reasons. I was questioning everything, life, my purpose in life and my physical capabilities in life? I was very discouraged because at that particular time it was looking like the answer was, no I can't. As the tour was wrapping up, I was Thanking God I Made it without a hospital visit. But now I had to make it back home. I was in a lot of physical pain and the thought of the airport was daunting. I've never flown out of Philadelphia so I didn't know the layout, so that scared me. I didn't know how far or long I would have to walk, so that scared me. I knew it would probably be best to request a wheelchair but I don't like requesting assistance of any kind because to me it feels like I am giving up or giving in to my disease. That is a constant struggle for me, accepting and realizing that I will sometimes need help. I also hate the stares and assumptions from others when any type of assistance is requested because; I look, well "Glamorous". ;-) I was surrounded by friends new and old while on the #BioExperience Tour. And my friend, who is also an IBD advocate, insisted I get a wheelchair once I arrived at the airport. I said okay, but I think she knew I probably wouldn't request it. So when we arrived at the airport my friend, before she departed for her flight, requested wheelchair assistance for me. I breathed a sigh of relief. But no more than 2 minutes after we asked, sure enough, the assistant asked me "Why did I need a wheelchair?" and then stated "I look too young to have anything wrong with me!" I just smiled and said "I wish!" But that made me very upset. I'm so tired of those comments. I try so hard to try. You have no idea how much I wish I didn't need it. They provided wheelchair assistance after my non responsiveness. As we are rolling through the airport I see the glares and I can feel the whispers behind my back. Then, I go through security. My ostomy shows up in the body scan as it normally does when I fly but this time, I get harassed, patted down, and treated like a suspected terrorist. The TSA agent then said "next time, wear the ostomy to the side". I was so upset and on the verge of tears by now, I couldn't even respond because I was so mad and honestly didn't have the physical energy to engage. While they are fully examining me, I see the wheelchair assistant off to the side. She is just staring as all this is taking place and quite frankly looking scared because by now she realizes something is wrong with me but doesn't know what. I didn’t say anything I just stare back at her with tears welling up in my eyes.

So after all of that, the airport experience coupled with the BioExperience and its physical demands, I was done! I talked to my parents and told them I was done. I was so upset and frustrated. My parents, of course, being who they are, were very supportive and continued to encourage me. But I thought to myself this just isn't for me, or so I thought. It is a lot easier to say you don't like to do something or can't do something then admitting you need help with doing it.

And then this happened! (Picture) On the plane, on my way home from the BioExperience Tour I ran into the 18th Surgeon General of the United States! I've met her before, a couple of times actually but through work (Gutless and Glamorous is not my job, nor do I mention Gutless and Glamorous while at work). I noticed her while I was boarding the plane and I said hello (she was in first class, obviously, lol). I was debating if I should even speak because I wasn't feeling well and at any moment I could burst into tears, again. But I spoke. She said hello and we started talking briefly, but because everyone was boarding and she was in first class and I was headed straight to the back, she thought it would be best to talk after the flight. I of course say sure but I'm thinking to myself, mmmhmm, she is going to run after we land. Lol! So the whole flight I'm wondering a) will she wait and b) if she does wait, what in the world am I going to say to her. Anyway, the flight lands and we de-board the plane. Sure enough, a woman of her word. When I get off the plane she was waiting on me! So we start talking. Then I start thinking to myself just ask her for a picture, a picture with the sign (Gutless and Glamorous sign). I normally don't carry my sign around but this time I had it. So I tell her what I am doing (at that time I was doing the Instagram Contest) and I ask her to take a picture with the Gutless and Glamorous sign. She said sure! I honestly didn't think she would so I wasn't prepared. I had to unpack my messy suitcase in front of the surgeon general, underwear and shoes flying everywhere as soon as I unzipped it because the sign was all the way at the bottom. Anyway, I get the sign out and we take a picture and we start talking some more. She asks why I was in Philadelphia and I tell her I am an IBD Advocate and I was invited to tour the labs and manufacturing facilities of Janssen Pharmaceuticals. She is very interested, so we start talking specifics, biosimilars and other biologics and what they are being used for. We start talking about auto immune conditions and how they affect the body. We start talking about Crohn's and ostomy. She of course wanted to know what Gutless and Glamorous was so I tell her about my story with Crohn's and how and why I started Gutless and Glamorous. Then the Surgeon General of the United States of America told me "I love that you are doing this and advocating for others, please please keep up the good work!" Once again, I was about to start crying. But this time tears of joy! I couldn't stop smiling. Why? What are the odds I run into The Surgeon General and she tells me to keep doing what I'm doing, AFTER the very recent thoughts I had been having? The questions I had been asking myself just the day before, thoughts of giving up. Questioning how can I do this with the way I feel most of the time. What are the odds? I can answer that question. ONLY God! Affirmation Received!

Lesson Learned: Don't ever give up no matter how hard and difficult it may seem. No matter what it may look like at the time, no matter how it may look for you, or no matter how it make look to others, or how it gets done, keep going. Mostly, from my experience, it can take months or years to fully understand why something may be happening to you. And then when you think you have figured it out something else happens and it makes you question your understanding of that. This time, my reassurance just so happened to come through the US Surgeon General but believe me it was only God and He is always on time!