No breaks allowed.

Hey guys!

Sorry I haven’t written much like I thought I was going to. I had every intention, but things just get kind of busy. Lately, I have been out and about and working on homework.

I probably mentioned this last time, but I always take the wrong bus. Only the last time, I dragged my girlfriend Annie on the wrong bus with me. Well, we met this amazing guy on the bus that night. On this entire bus that was totally empty, he sat right next to us and just started talking. And he’s gorgeous. Then the bus driver told us to get off of the bus because we weren’t on the right one. Poof. This kid had just disappeared out of my life. All I could think was, I’m going to find this kid. He had mentioned that he hung out with this one girl a few weeks ago that actually went to my high school and sure enough, I found him on Facebook.

Now we hang out all the time, we are actually from the same town, and I just love this kid. He’s amazing. We’re alike in so many ways and it’s absolutely crazy. And I met him on a bus. ALL BECAUSE I TOOK THE WRONG BUS. I can’t get over that. What’s better is that when school ends, he’ll be back in the same area as me.

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So I had a thought the other day. When I talked to the director of housing, she had said that there are a lot of other students with similar medical situations as me that also requested private bathrooms and I was wondering just how many. Maybe I could start a support group on campus. I was also wondering about how many people on campus have autoimmune diseases and how they deal with it.

Later that day, I met with my new friend I met on the bus and we started talking about different things and he mentioned he was in the hospital. When I asked what it was for, he started talking about his kidneys and how they put him on steroids and how he’s been in remission for a long time and etc. Then it hit me: He has an autoimmune disorder too! I would never wish that on my worst enemy but I can’t believe I met the perfect guy that understands how much it sucks to take steroids and be on medications or be in the hospital. He understands and I love it.

It’s crazy how God can put certain people in your life.

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No breaks allowed. Nope. Not for me. I’ve been feeling pretty great lately and then in the last few weeks, I noticed my hair falling out. A lot has fallen out. I waited a little while and it didn’t slow down. Then, one day I fell asleep in my abnormal psychology class which isn’t normal for me. After my class ended at 12:50, I came back to my dorm to take a nap. I didn’t wake up until after 5pm. I never sleep like that – ever. I made myself go to dinner even though I wasn’t crazy hungry and then came back to my dorm and flopped in my bed. I didn’t mean to fall asleep and I still did! I slept for almost 16 hours throughout that day and through the night.

Clearly, something is wrong here.

Luckily, the University of Illinois has a health center that is included in your tuition. I made an appointment with the nurse practitioner and she ordered lots of blood work. Luckily, my sed-rate is in the normal range so my inflammation isn’t up. This means the Pentasa is working well.

However, my iron and hemoglobin are pretty low. The levels of hemoglobin that are normal in women is about 12-15. Mine is 9.3. So that’s fairly low. My iron levels? The saturation should be between roughly 20%-50%. Mine is at 1.5%. It’s extremely low. No wonder I’m so tired all of the time!

Somewhere, I’m losing blood. I haven’t noticed any blood loss at all and usually if my hemoglobin is that low, I can tell if there is blood in my stools. Maybe I am just not getting enough iron…. Well, today my mom took me to the hospital in Urbana and while I was there, they did an fecal occult blood test and it was definitely positive. No question about it. (The nurse practitioner at McKinley Health Center was actually in charge of me at the hospital too! That was a nice coincidence.) She said that half of the paper was blue – blue indicating that there is blood.

Great. Now what?

I have to get in touch with my GI doctor back home and hopefully he’ll have a plan. I see Dr. Khaled in Peoria, IL. He’s a pediatric GI doctor but is by far the best GI doctor I’ve seen. He’s extremely thorough and thinks of every possibility.

The only thing I’m afraid of is 6MP. It’s also called mercaptopurine and is classified as chemotherapy. I had the surgery to remove my intestine because I knew these medicines were harsh. Hopefully, I won’t have to be on it, but somehow, we have to get the bleeding under control. Maybe I’ll get lucky and he’ll do a camera pill instead of having me scheduled for a scope. I’d hate to miss school!

Right now I’m on iron supplement pills and hopefully that gets some of my energy back up. When I know more, I’ll be sure to write about it!

Until next time,

Liesl ♥