Hey strangers! Need to get back on top of writing, I miss it! Talk about a busy week and a lot more to tell you all! I moved into my own place!! I love it so so so much!
I signed my lease last Tuesday and a week later I’m all settled. I worked a lot this past weekend and have barely had time to sit down and relax, which thankfully I have a few days off to do so. The apartment has all refinished hardwood floors and so many windows. Also, not to mention two huge closets in the bedroom for all of my clothes 🙂 The landlord let me paint the walls, which I was ecstatic about, so me and my mom got to work during a big snow storm last week and got almost the whole thing painted! We finished the kitchen and bathroom yesterday and my living room furniture was delivered today. I couldn’t have done any of this without her. She is literally amazing, I don’t know how she does it! Despite living like a caveman with no furniture and no internet/TV for a week it was so worth it. Now I’m all cozy with my pup (Zoey, one of the little white ones) sitting on my couch watching TV. I’m so happy here. It’s safe and the perfect situation.
I finally feel like I’m going somewhere in my life. I know it sounds crazy, but being as sick as I’ve been my whole life there are constant obstacles to overcome and many times I can’t finish things or have had to quit a job due to just being sick. And frankly, it sucks. It sucks a lot. Like I’ve said earlier school has been a serious struggle for me. Something about the stress of it being a huge trigger to my stomach. Having had to withdraw twice because of hospitalizations it got extremely frustrating. Not only just feeling like a disappointment to myself at times, when people around me don’t know my situation and I say “no I don’t go to school” or“I took a couple semesters off” they look at me and I know what their thinking, “well you’re going nowhere”. I’m an extremely ambitious person and I want to do a lot in my life, and a lot of people don’t know this because to the outside world it looks like I’m not doing much. I work in a Frozen Yogurt shop as a supervisor and for a local vodka company. This doesn’t exactly sound like I’m making the best living. But, I love my life right now and feeling good is my main priority. I won’t let this disease stop me. And as foolish as it may sound to you, getting my own apartment, taking my finances into my own hands and gaining some more independence is my way of taking lead.
Well, on another note… still on this damn prednisone, down to 20mg though! Face still as my mom calls it- looks like a “lil chubbet”. Thanks mom, at least you’re honest hah! Gotta love her 🙂 But amazing as it is, I am feeling GREAT! I don’t think I’ve ever felt so good in my life and I think that’s why I am so happy. I seriously appreciate life so much when I feel good. It’s kind of weird though because usually if I go any lower than 40mg on prednisone I start getting sick again. That has been the pattern my whole life. I’ve been off of 40mg for almost two weeks now. And I’m still in the washout period of the Stelara which means it is still in my system. I had a talk with my mom about this because it is getting close to the fecal transplant clinical trial. I am actually rethinking it. I’ve been emailing back and forth with my doctor in Boston tonight about it. I think the Stelara is actually working. Woah, yes this is a huge change in plan. I’m very worried that because I am feeling so good with my history of getting thrown into a flare after colonoscopies (which I will have two in a month) I will become sick from that and the fecal transplant won’t work. My doctor pointed out that he thinks the fecal transplant won’t hurt because I can always go back on the Stelara. Which he is right but that raises another issue… Insurance. If I go off of the medication because it doesn’t work it is going to be extremely hard to get them to cover it again. As if it wasn’t hard enough the first time *sigh*. Hours of my mom fighting with them on the phone. I mean, the medication does cost $12,000 for one shot, which is absolutely absurd. This is a huge risk. It’s awful the reasoning behind it but insurance is only getting worse. And thankfully, my mom gets really good insurance coverage from her work. I’m nervous also because I’ve heard the getting the fecal transplant once has been beneficial to colitis patients, but with Crohn’s it usually takes multiple treatments, and this clinical trial is only approved for one treatment. So, my ongoing question is still there of is it worth it. I guess we will only know if I do it or not. I will let you all know what my final decision is!
To close this post on a positive note, us Crohnies know the struggle. And yes, the struggle is real. Keeping a positive attitude is my main focus of this whole blog. We can tend to get negative and wonder why we’ve been handed this awful disease. Don’t let those thoughts consume your life. This battle was given to you to fight because you’re strong enough to fight it. You’re strong enough to pull through the hard times and show everyone what you’re made of. I’m slowly but surely accomplishing things in my life, and you can too! It might take us a little longer but we can do it. And we will do it.
I’ll be sure to be writing more often!