Getting Back to Me

Intro

(I was going through some older pieces I’ve written today and this one brings back both good and bad memories. Bad memories in the sense that I can’t believe I thought this year was so difficult, after experiencing what I have in The last 4 years. Good memories in the sense that it’s helping me to remember that life can be full of surprises and not all of them are going to be disastrous.)

Looking Back

This year has been full of challenges, disappointments and discovery, despite the growing fear in the pit of my stomach I decided to take a leap of faith and move out of the nest.

August 25, 2010 was the day that life as I knew it changed. It’s surprising how much a person can change in just a year. When I moved out I expected the expenses but anticipated the freedom of decisions. I didn’t expect the changes within myself. As a teenager, I knew relying on other people for my basic needs was difficult but didn’t realize the difficulty of finding reliable workers.

It has been a year of lessons. the most important was not to trust everyone who seems to be your “friend”. Shortly after moving, workers were not showing up and coming and going as they pleased. When it comes to school, if I’m not in control I feel lost. I also have high standards. Unreliable workers Him and himto other things slipping from my grasp.

I looked in the mirror and saw someone that I did not recognize, I had no idea what to do. I managed to finish with decent grades and was thankful for summer break. Little did I know, something big happened that was going to make a big difference.

In April, 2011, My cousin Ethan was in a motorcycle accident, taking away the function of his legs and most from his arms. Ethan’s questions allowed me to view my problems differently and made me realize I don’t have to be consumed by stressful situations. The words, “God never gives us more than we can handle” have never meant more to me. I appreciated meeting Ethan’s friend Steve, who was in a motorcycle accident 18 years ago, losing feeling and function in part of his body and half the feeling in his arms. He still plays songs he played before his accident. Watching him play made me realize how much I miss the things I love the most. I don’t know if I will ever be able to thank these men enough. The moral of the story: it is important to keep an eye on the prize, while making time for the the things you love.

Reading the material above Made me think about several different things. The first is that bad situations do eventually get better. Second, even though Crohn's disease is going to be an ongoing struggle for the rest of my life, I need to find a way to get back to the things that make me happy. The third thing it caused me to think about was how much helping others truly helps me stay grounded and in a good mindset. It gives me the perspective that even though things may be bad right now, they could always be a lot worse than what they are.

My journey

Adapting to life with Crohn's disease has indeed been more of a challenge than I could have ever expected. Although I've described the fact that I have Crohn's disease and Cerebral palsy, I've never told my story about being diagnosed with Crohn's. If I'm being honest, I'm not sure where to start; from what I understand, it is pretty standard for it to take years to be diagnosed with Crohn's disease. For me, it took two years to get a definitive diagnosis; the part of my diagnosis story that was not typical is that I was not diagnosed until the age of 31. Being diagnosed this late in life was very shocking to me because I was under the impression that Crohn's disease was something you were diagnosed with within your late teens or early 20s at the latest. I know some people are diagnosed very early in life… but I have never Heard of anyone not being diagnosed until their early 30s. This myth was dispelled after talking to the doctor who diagnosed me; he stated that yes, people are typically diagnosed in younger years of life; however, the cut-off for Crohn's disease to occur generally is age 33.

Before, Crohn's disease was anywhere on my radar, at least for my physical health… some of the women in my family have always had food sensitivity, but everyone's sensitivities are different. My mother, in her early 30s, began having a lot of the same symptoms I was having (stomach pain, sensitivity to a lot of different foods, and diarrhea mixed with constipation). However, she did not meet any of the other benchmarks for Crohn's disease (Severe weight loss, lack of appetite, and blood in the stool). I wish my relatives had pushed for more testing, especially my mother. I feel like if it weren't even present in my family, so many medical professionals would not have looked at me like I was talking nonsense when explaining my symptoms. I've always struggled with constipation because of my cerebral palsy, so that was nothing new. However, when I began having severe diarrhea three out of four weeks in a month, I decided to get some medical help.

My first experience with the G.I. doctor was not a pleasant one. To be honest, it resulted in me wanting to punch him in the face… not to say that I did this, but I did not want to be arrested. This doctor proceeded to tell me that there was no accurate way to know if I had Crohn's disease apart from giving me a colonoscopy and an endoscopy… but that he thought these were not good options for me due to my current physical condition. Mind you, this doctor had not even read my medical records to see that I had undergone much more invasive procedures than the ones mentioned above. They told me it would be two months before I could see another doctor. So, with nowhere else to turn and unsure what the next step should be, I reached out to a nurse known for working with clients from a more holistic medicine practice. He had me do a combination of an elimination diet and the whole 30 diet, which helped me feel somewhat better, but by no means did it resolve everything.

By December 2021, I had gone from 114 pounds to 97 pounds in three weeks, barely able to eat more than small saucer plates once a day. I went to my appointment with my new doctor when I informed her that I almost fainted while checking in, she immediately sent me to the emergency room, where they gave me a lot of fluids for dehydration period after doing a rectal exam and discovering many problematic things they decided to admit me. At this point, I was hospitalized for a week, during which time the prep for a colonoscopy and my very first colonoscopy and endoscopy were completed. I won't go into the graphics of the colonoscopy prep other than to say I discovered that I could not handle doing the go-lightly prep because of the sheer volume. Hence, I must combine Dulcolax and MiraLAX for 24 hours before the procedure.

Conclusion

To bring this to a close, I received very poor care at the hospital where I was originally diagnosed so I switched healthcare systems. However, despite trying two different biologic medications and Azaothine Here, I sit almost three years later, never seeing remission… wondering when I will be able to return to the things that I love, like swimming and my just general attitude of being up for trying at least anything once. I'm still trying to find the best way to Live the life that I want with this diagnosis, especially when there is so much talk about how difficult it is for people with chronic illnesses to maintain employment. My friends and family would say that if there's anyone who can find a way through a challenging situation, it would be me… but when something seems never-ending it's difficult to see the way through. I’d like to end with a quote that will stay in my mind forever, “The choices you make are the challenges you face”. -Steve Mireau