Grit with Glitter

I find myself once again facing a life-altering surgery and the one thing I know for certain is that the only guarantee is change.

But we aren’t strangers, change and I. I have had a series of unique and bizarre health challenges over the last 12 years and they have essentially altered what I know to be true about myself. Throughout that time, I was able to be open and vulnerable and transparent about a lot of it, but after years of (relatively) good health, I stopped wanting to share when things started to go downhill again. My more recent posts glossed over a lot because I wasn’t ready for people to know just how bad my health had gotten. I was still in a classic pattern of “pretend it’s fine and just do more to distract myself.” Writing it down makes it real. And only now am I ready to face that.

A Brief(-ish) Recap of How I got Here

So this new chapter of the health journey that never seems to end began in March of 2023 when I:

• Got an extremely painful cyst in a delicate area that led to multiple rounds of treatment, including many steroid shots directly into it (0 out of 10, do not recommend)
• Had a surgery that led to what I later learned was a mis-diagnosis of Hidradenitis-Suppurativa (HS)
• Had another surgery that left my surgeon stumped as he had never seen my particular combination of awesome health stuff
• Got into the Mayo Clinic in Phoenix within 24 hours of calling- thanks to how weird that awesome health stuff is
• Was adjusting to my husband being gone a lot because of a new job based in Phoenix, but counted it as a huge blessing because he was there as I went to Mayo for the first time in January 2024
• Learned I had been mis-diagnosed and actually had Crohn’s Disease and needed surgery to replace an infected seton drain
• Started going back and forth for treatment for a complicated case of Crohn’s, made one-of-a kind by the fact that I already had my colon removed and a j-pouch from Ulcerative Colitis
• Had the combination of treatment side effects, traveling, solo parenting 5 days a week, and working myself ragged, cause my health to take a nose-dive, leading to my family literally intervention me into taking a medical leave from work in early 2024
• Decided to move to Phoenix for my husband’s work and so I could be closer to Mayo
• Planned to come back from leave and stay CEO of Annie’s Place (the non-profit org I founded and ran) while living in Phoenix until I kept getting sicker.
• Retired as CEO but intended to remain active on the Board. It soon became clear that was no longer possible. While I had a tremendous amount of grief about no longer being a part of the organization I had created and put 10 years of my life, passion, and purpose into, this change allowed me to truly prioritize my mental and physical health for the first time in a long time.
• Moved my pre-teen twins from the only home and friends they had ever known and began the difficult process of settling us in a new place where we didn’t know anyone
• Had a major crisis of self, of identity, and of purpose
• Developed a second fistula and had surgery again
• Kept the Mayo Clinic doctors on their toes- my case even got brought to the fancy committee where the whole GI department gets together to problem solve
• Spent months on a double dose (ie double side effects) of the widely agreed upon best possible chance to get me in remission- which failed
• Once again made the decision to get a life-altering surgery in pursuit of a better quality of life (the first being my colon-removal in 2014)
• Made a super-empowered video about this decision and my commitment to share all about my journey
• Found out the next week that Annie’s Place was closing permanently. At the same time everyone else did.

Which kind of set me back. I didn’t know how to share anything without also addressing this heartbreaking loss. And it does break my heart; for the community, for the amazing people who helped build the organization, for the patients and the children, and for the dedicated team who worked there bringing hope, support, and joy into thousands of lives.

I had no idea what to say other than that I am devastated, but I don’t have answers. When I left the board, I only learned about what was happening at the organization through an occasional social media post. While I certainly have feelings about that, I also know it is common for an organization to decide to distance from the Founder.

I love and trust the staff who were running Annie’s Place and understand at a deep level how difficult it is to navigate the constant pressures on a growing non-profit. Sometimes, despite everyone’s best efforts shit just happens.

I am trying to come to peace with this loss and see the blessing I was given in the not knowing. In the focusing on my health so that I could be clear-headed enough to make an incredibly difficult decision.

So Here We Are- One Week Until Surgery

On February 20, I will be getting an Ileostomy– a surgery that makes the end of my digestive tract a piece of my small intestine that sticks out of my abdomen. So, basically I will be pooping into a bag on my belly forever (don’t be jealous!) And I am not naive to the amount of pain or the extent of the recovery I have to go through. We are looking at about a week in the hospital, and (based on previous experience) several months that are basically hell glazed over a bit by pain meds.

But I am doing this to take control of my health again, it’s not a cure (Crohn’s doesn’t have one,) but it will solve my fistulas which have had me in constant pain for almost 2 years. These bastards have severely limited my ability to even walk or sit for long periods of time without extremely painful consequences.

And once I am through the recovery- the sky is the limit! There are even Olympic athletes with ostomies!! Though it might be a long-shot taking up a new sport at 45- last year’s breakdancing made me think I might have a chance…

And I only have a few precious years left before BOTH of my children go away to college and I am not wasting one more minute watching from the sidelines while they learn to ski, or explore a new city. I am getting my quality of life back and then I am going to USE it!

This Change Is Scary, But I Have The Tools To Get Through It

See, I have a secret weapon as I enter this surgery, an advantage I didn’t have 10 years ago. I already learned what it means to be a survivor, how to go through the worst in life and pick yourself back up, and I have done it more in the last 12 years than many people experience in a lifetime (or several!) And this will be no exception. Through the grief and trauma and pain, all the moments when it feels impossible to continue, I have learned how to find some little glimmer to hold on to, and that I have a reserve of strength that is saved for these moments and accessible only when really needed, and that no matter what it feels like in the moment I WILL get through it.

This has one of the hardest years of my life, and with my history, that is saying something! But the last time things got this bad something amazing and beautiful and paradigm-changing came from it. And maybe that thing lived the impactful life it was meant to have, because nothing lasts forever.

But I have faith that this too will lead me somewhere I can’t possibly imagine right now. Though I really wish I could skip to the good part!

And going through these kind of life-altering events ALTERS YOUR LIFE. You are not the same person on the other side. But the best thing that has come from my many experiences is that I have learned that you get to choose how you change and that you have agency in shaping the person you become.

I can’t wait to see who that is… I have a feeling I am going to like her!

Please comment if you have had a similar experience and what you have learned from it or share if you think this might make someone feel a little less alone in their struggle.