Transit umbra, lux permanet. Transit umbra, lux permanet. Transit umbra, lux permanet...
I am reminding myself of this saying that meant so much to me. Reminding myself that I have tattooed this saying on my body. Reminding myself that there is light remaining after the shadows have passed. Trying so hard to take my own advice, something that I laid out for myself when I got this tattoo a couple years ago, not knowing all the hardships that I would be facing.
Last I posted, I had just moved back to the states from my year abroad in nursing school. Since then, I graduated from Colorado State University in August 2012, moved back to Michigan (I will always be a Michigander <3 ), passed my nursing boards in October 2012 and officially became an RN! That was easily the best day of my life. Then, a month later I accepted a job on a progressive care cardiac step down unit (my dream job!!) at a hospital in Ann Arbor, MI. My boyfriend of 6 years and I broke up shortly after I returned to Michigan (I felt sorry for myself for about a week and then realized how much better off I was without him). Shortly after, I reconnected with an old college friend from my Central Michigan University days, whom I had been friends with for 6 years, and what do ya know, sparks started flying and he is now the love of my life. I sure was blessed in 2012 and 2013. So many amazing and wonderful things happened in my life and I will never take for granted how great those years were. Did I mention that I LOVE my job and have the most amazing co-workers too?
OK, but now I am going to start feeling a little sorry for myself so just deal with it. Pity party ahead.
2014 has not been my best year. I spent the first two weeks of 2014 in the hospital, with a brand new diagnosis of Ulcerative Colitis. This is an autoimmune disease that I will have forever. It is accompanied by a plethora of completely horrible GI symptoms and has been debilitating for me at times. But...shadow passes light remains, shadow passes light remains, shadow passes light remains...
My symptoms started a couple months before I got help (bad nurse!), and they literally started overnight. One day things were normal, and the next day things were far from normal. I was sure for months that I had UC and before I even saw a doctor, I was telling my family that I was sure I had UC or Crohns. But being a nurse and all, I knew the medications used to treat it and I was 150% against starting any medications like that whatsoever...so I just tried to deal with it on my own (BAD NURSE!). Eventually it got so bad that I was constantly having abdominal pains, and couldn't eat food with out being in severe pain or running to the bathroom, so I took myself to the ER.
I was dehydrated and very anemic. I received a few blood transfusions the night I was admitted to the hospital and obviously lots of IV fluids. Bless his heart, my boyfriend stayed with me in the hospital for days...as long as he could get away with without going to work. And when he had to return to work, he came over to the hospital every night and stayed with me, brought his work clothes, and went to work from the hospital the next morning. He did this during the coldest weather that Michigan has ever seen in the worst driving conditions too. Shadow passes light remains, shadow passes light remains...
After much blood work, diagnostic tests, and errrrrhm...certain samples collected...the doctors were able to officially diagnose me with UC. It didn't come as a surprise to me however I was at the point where I was ready for relief, ready for anything...I didn't care anymore about the medications I might have to take...I just needed relief.
The first time I was discharged, I rebounded within 12 hours HORRIBLY without the IV steroids I had been getting (they tried to taper me down and onto oral steroids). I was readmitted the next morning.
So next step for me was Remicade (I thank God for aggressive doctors). I wasn't even worried about it. I wanted it. Bring. It. On. I got back on the IV steroids while waiting to be cleared for my first Remicade infusion and spent days on only clear liquids (I think I have new cavities from all the popcicles and juice that I consumed during my hospital stays.) After my first infusion, I saw MAJOR changes! The doctors were able to switch me to oral steroids while in the hospital and I tolerated it fairly well. Things were not perfect by any means, but I saw improvement and that was exciting and 2 days after that first infusion, my inflammatory markers dropped a lot...proof the infusion was helping.
Discharged again after spending 2 weeks in the hospital, 25 lbs lighter...every day is a struggle.
Eating food has been the hardest thing for me...knowing that I could be facing consequences for it after. The thing that is so shitty about this disease is that it is different for everyone. One person claims that a certain food got them through their worst flare-up, while others say that they can't touch the stuff. Its all trial and error. Every day is a gamble. And its incredible how easily winded I get, and how much weaker I am now than I was a few weeks ago. I have never experienced anything like this before in my life. Today, I went on the elliptical for 5 minutes, took a shower afterwards, had to just sit on top of the toilet when I got out of the shower out of just pure exhaustion, and then just literally crashed on the couch. How pathetic! I am currently on short-term disability and family medical leave from my job. At the age of 27. I never ever thought I would go through something like this. Also, side note, I'm italian. I'm obsessed with food. Good food. ANY food. Since I have been sick, I literally dream about foods that I wish I could eat. Shadow passes light remains, shadow passes light remains...
I am so thankful for my family and my boyfriend and for my GI doctor who keeps in touch with me and I call with updates regularly. Some days I feel like I take a very large step forward, and others I feel like I fall back again. That's the nature of this disease and I have to be prepared for that. My next Remicade infusion is on the 30th, and I cannot freaking wait. These infusions could put me into remission for years. Until then, I'm going to stay focused on the light.
Peace and blessings to all.
