Hi MaKenzie! Can you tell us more about how Chrohn's affects you?
- I often have stomach pain, and have to make frequent trips to the bathroom. As far as my daily life, Crohn's affects me in a huge way through anemia. I wake up exhausted, and I often find myself sleeping 8+ hours and still waking up tired. One of the worst things about being anemic is I have to be very careful when I go out in public because it's easy for me to catch every small illness such as a cough or the stomach virus. When I am out in public, I always make sure I can pin point a restroom in case I have to stop what I am doing and run that way.
When did you find out about it? Tell me about that experience.
- I was nine (I am 19 now, so we are coming up on my 10 year anniversary) when I found out I had Crohn's. Prior to my diagnosis, we spent a month going back and forth to my local physician getting lab work done every other day. I was sleeping all the time, not eating, and constantly using the bathroom. Finally when they told my mother it could be leukemia, she packed me up and took me to our local university hospital. I arrived on a Sunday. That Monday I met my GI and had a colonoscopy and endoscopy done and was told I had Crohn's.
What happened after you received your diagnosis? How did you react?
- I am thankful to be diagnosed at such a young age because at that time, I wasn't too concerned about my diagnosis. Of course, everyone around me was worried and upset because Crohn's is an "invisible illness" meaning not many people know what it is and not many people have it. My mom and family instantly went started doing frantic research trying to figure out what it was since no one in my family had it or knew what it was. After I was diagnosed, I went through a lengthy hospital stay to attempt to find the right treatment method for me.
What kind of good or bad experiences have you had because of your condition?
- Good: I am so blessed to have this disease. I have met so many phenomenal people in the healthcare field, and I have learned a lot about myself and those around me. The most significant way this disease has impacted me is getting to reach others with my story.
- Bad: I had an intestinal leak 3 years ago. This leak left me on life support in the ICU and was in the hospital for 70+ days. Upon leaving the hospital, I had to leave with a flat ostomy, which resulted in a ton of pain due to frequent ostomy leaks (thankfully, I was able to have it reversed a few months later). When I am asked to highlight the worst part of my disease, my mind always goes back to my leak. I'm not bitter or angry at the situation, because I learned so much from it. But I don't think I'll ever be able to forget it.
What has been your biggest challenge?
- My biggest challenge would ultimately be staying healthy. Out of the 10 years I have had this disease, I almost reached remission one time, but it only lasted a year. Granted, I am thankful for the year of good health I had because it came at an important time (my senior year of high school) but eventually you get worn out going up and down on a roller coaster of good and bad days.
What has been easier to handle than you anticipated?
- When I was first diagnosed, I was terrified of needles. I wouldn't scream and throw tantrums or anything like that, but I would definitely cry and get pretty upset. Now, I can sit and take 3-4 needles at one time with ease.
What was harder?
- The hardest thing about having an invisible illness is trying to explain it to those around you. I still to this day have friends that don't understand that I can't hang out every night or that I need to sit down and take a break frequently because I am always fatigued.
What kind of support system do you have?
- Though some of my friends have a hard time understanding what I go through, they're always there to listen and defend me. After my leak left scars all over my stomach, I was horrified to go to pool parties and wear a two piece. My friends were always right there behind me encouraging me to embrace my scars, and they were always right there ready to defend me if anyone had anything negative to say. I have been blessed with friends who come to see me in the hospital, friends who have helped me change leaky ostomy bags, and friends who hold my hand while I vomit. I am one of the luckiest girls when it comes to having awesome friends. My parents have always been there for me and pushed me to keep going when I wanted to lay down and quit. My grandparents are phenomenal in the sense that they come up (I live on my own now) and cook for me and help me clean my home, they drive me back and forth to doctors appointments, and they stay with me when I am admitted in the hospital. My boyfriend has really been a blessing to me when it comes to my disease. He provides 24/7 care for me and is always willing to listen to me rant about my disease. Of course, I have a phenomenal service dog who I am so blessed to have by my side as a lifelong companion.
What would you say to someone else who has just received the same diagnosis?
- I often get messages from numerous people who are worried they may have Crohn's disease. Most of these people are worried that their life is going to be damaged forever. The most important thing I can say is that not everyone's disease is as severe as mine. Most people just take a few pills a day and they achieve remission. Sure, it's going to change your life, but it doesn't all happen at once. This change creeps up a little at a time, and the best thing is, you adapt to it. Looking back now, I can't even remember what my life was like before this disease. It's all about perspective. If you see it as a blessing, you'll be blessed, if you see this as a curse, it'll be a curse.
--------------------------------------------------------------------------------------------------------------------
Meet MaKenzie and learn more about Chrohn's Disease: http://bit.ly/2gxKauw
--------------------------------------------------------------------------------------------------------------------
You can follow MaKenzie's story on
Facebook | Twitter | Instagram | The Mighty
 |
| Shirt available in the Sunshine and Spoons Shop |
I hope you found MaKenzie's story and strength encouraging. She is truly an amazing young woman!
You might also enjoy:
You are a brave soul. We do not know how many types of illnesses and diseases are there in the world. Thank you so much making others aware. You are truly a fighter and a lovely girl.
ReplyDelete