Chronic Illness, Gastroparesis, Grad School, PCOS

Focus on the Wins

My one year anniversary of getting diagnosed with gastroparesis happened on May 12th. 1 year of knowing what was plaguing my body. Leading up to this day I was worried I would be a total wreck emotionally. 3 days earlier on May 9, I had a huge exam that had been causing stress for me and my classmates for a while. Having May 12th looming over my head didn’t help in the slightest. It really started to get to me. Thinking about how much worse off I was, how I may keep getting worse, and not knowing the future. The GP diagnosis blindsided me completely and was a lot to think about. Especially as so many fears had poured into my head that night after the diagnosis. In the midst of all of this near the anniversary, I got this text from my friend:

“I think you have had a lot of wins, and it is best to focus on those instead of the troubling things that have come up.”

It is beyond simple to let the wins slip through the cracks when day in and day out you are stressed, nauseous, in pain, and tired. We can get stuck in the monotony and negatives of dealing with this. When you are in the trenches of living with a chronic illness you can live day to day waiting for things to ease up a little. It is easy to focus about how things might get worse or worry about what your condition will be like in a few years and how that could ruin your life. I know I get stuck in that occasionally, especially with flare ups. But you have to look back and find your victories, notice your conquered mountains, look to all the moments of sunlight and joy, and just simply celebrate the wins. For me one of the big things was having survived my first year of PT school when it seemed like body was working against me and trying to derail the plan. I have many amazing things set up for the next year. I graduated college a few weeks ago. And even beyond the big things, I had tiny wins that were worth celebrating too. Like enjoying a night out with friends even though I couldn’t eat.

Find the little things, find the big things, write them down, and keep a list. On days where it gets hard or scary, look at that list and remind yourself the amount of times you have won. Remind yourself that deep inside is a superhero fighting and winning on a daily basis. Chronic illness can’t stop you from finding those wins. They are much more joyful and a better focus than the negatives of dealing with a malfunctioning body.

Choose your favorite win and the next time you don’t think you can do it, remind yourself you can. You’ve done it before and will do it again. Plans change and life causes things to turn upside but that will never change how much you have already done and will continue to do. Remember, focus on your wins and celebrate them!

Chronic Illness, PCOS

PCOS and “The Internet is a Scary Place”

There is something unique about the day you decide that the symptoms you have been experiencing aren’t normal. That there is something that isn’t quite right. With subsequent new symptoms you get into the routine of what to do and who to talk to. But nothing will ever compare to the first time it dawns on you that you need the help of a doctor and life may change.

For me that day happened in early 2015. It had been an inkling of an idea in the back of my mind for much longer. That was the moment where it all suddenly became much more real and I knew I needed to talk to a doctor. I got my first and so far only dose of a doctor not believing me. I was told the internet is a scary place and that he would run blood work and we would see from there if it was PCOS. Mind you I had hirsutism, irregular periods, terrible acne, thin hair, and the classic fat distribution for PCOS. In addition my labs pointed even more towards PCOS but somehow I was told that I didn’t have PCOS and to come back in a year. I hope I never have to see that health care provider again. If I do (possibly this week) I will gladly fill him in on everything that he missed.

I went home that day feeling defeated that I didn’t get the answer I needed. I knew something wasn’t right, my experience matched those of so many others with PCOS and here I couldn’t get a diagnosis.

I went straight to the “very scary” internet and found the best of the best for PCOS in my area. I chose one after a long week of thinking and deciding and called the office to schedule an appointment. The closest appointment was in 4 months. That seemed like an eternity away but in the end it was so worth it. August 2015 came around, my doctor walked into the exam room and diagnosed me with PCOS within 5 minutes. She did a thorough exam and labs of her own and the diagnosis stuck along with shock from her that I hadn’t been diagnosed earlier. Beyond all of that I met a fantastic physician who would be extremely instrumental in the diagnosis of later conditions. I am very lucky to hit it out of the park with this choice. Good physicians make all the difference in the chronic illness journey. That day I got someone who believed in me. Someone that listens to me every time I get a new symptom that I know isn’t normal or right. She makes every experience of having a new symptom easier.

That first time is hard, as is every time after it. But that first one hits home the most because this is where I was introduced into the world of chronic medical conditions. Introduced into the world of taking prescription medication every day. Introduced into a community that would start to help me through the really hard days. It was here I became stronger and more resilient. At that point I had no clue where my body would take me and how much worse it would get, but at that point this was the day my life changed forever. I now can draw a distinction before pre August 3rd me and post August 3rd me. All because I decided something wasn’t right and that this was something that required attention. Life changed in a major way. My story was just beginning.

Chronic Illness, Gastroparesis, Grad School, PCOS

My Inner Superhero

I have wanted to start a blog since about a month after my PCOS diagnosis. I didn’t know what I would want to write about. However, as time went on and illness and condition after illness and condition was added to my chart and life the desire grew stronger. There was more I wanted to share and more I wanted to do. I wanted a space to share my journey to help those who are following a similar path and might be scared after their diagnosis or want to find someone like them. I wish a blog like this existed after I was diagnosed with gastroparesis and trying to find out how to handle gastroparesis, grad school, and eventually working in a health care profession. I am still only on the grad school part but every day brings me closer to living my dreams. I finally bit the bullet so here we are.

Now came the hard choice of a title. It quickly dawned on me that “my inner superhero” was the only thing that would make sense. A few months ago I decided that every person living with a chronic medical condition/illness has a little extra superhero within them. This isn’t some new concept, but it finally clicked in my head. To be living every day with whatever symptom our bodies throw our way and continue to thrive the best we can, is a superpower within itself. Whenever I talk with new spoonie friends or someone asks for advice, I always remind them of their inner superhero. If I have a rough morning and am upset on my way to school I just breath and remind myself of that inner superhero. It’s one of my strategies to keep moving forward no matter what happens.

I’m not sure what direction this blog will take. It will likely be as unpredictable as my life, but my goal is to share my story, raise awareness, and have fun along the way 🙂

So it’s capes on and heads high on this journey with chronic illness!