Holy Week

My first Holy Week & Easter with Mr. Safety.

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Easter Eve, April 2018

I wanted to share my week during the Holiest Week and one that is my absolute favorite as it brings a flood of amazing memories. Yes, one being my dad as a huge part of the memory. This week was also his favorite in every sense. From the Coptic hymns, traditions, seeing the church packed with his congregation, but above all focusing on God and all that He did for our salvation.

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What bag?

However, I am going to shift gears on the focus and purpose of this blog post. Ever since I was a young child and could understand the importance of Holy Week, I would get so excited to attend Pascha (services) in the morning and night. In between, I would hang with friends at the park or go home and watch Jesus of Nazareth (every single year, that I memorize the movie lol but, I love it!) I would get so excited when I was in 1st-12th grade when spring break fell on Holy Week. When I got into College, it was much harder but I would always make it work. I remember my first Holy Week with UC, as it was an extremely tough one as I was still figuring out what medications would work. I was about 3-4 months in with this disease and on high dose of prednisone. I was physically ill that I missed many of the Pascha services which was hard very upsetting for me. If you haven’t known by now, I am very routinely and LOVE traditions, I had these changes with my life which I had no choice but to accept it and adjust. Besides the year before, 2009 being the hardest Holy Week due to it being my first Holy Week without my dad, 2010 was hard for me medically.

And than I was in remission from 2011-2016, So I didn’t miss a second of my favorite week (besides when I lived in California for fashion school). At the end of 2016, thankfully I was on Remicade which was an IV and back in remission for a year. And than 2017, I had to start a new medication called Entyivo which was also an IV. It wasn’t fully kicking in but during Holy Week/Easter I was doing “ok” I wasn’t quite in remission but I wasn’t in a full flareup. So, I felt it was just a matter of time for it to kick in. Clearly I was wrong because I have one less organ and soon to have another removed. But, I was thankful I was able to get through Holy Week with no “extreme’ issues.

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Now, this was my first Holy Week/Easter with Mr.Safety aka an ostomy bag. I had mixed feelings about it. Just to give you a little insight on when a person removes their large colon, you are also removing “water & sodium” which is why if you see me, you’ll always see that I either have my green water bottle, some sort of brand water bottle, or lemon Gatorade. I constantly have to stay hydrated, eat foods with high sodium, and make sure my sugar isn’t low. And than there is the other part of having to change my bag every other day. To change my bag, for me isn’t rainbows and unicorns, although that would be cool instead of looking at a stoma sometimes lol. It takes much time and prep for me personally. I change my bags every other day, between the hours of 10:30am-1pm. During this time, my stoma is quite and not as active which makes it easier and more seamless to change. However, that is not always the case as it gives me unwanted surprises. And than, there is the emptying of the bag. Oh the fun of that. Some days its easy peasy, other times it takes a while not due to pain just due to how much output I have, thickness and than cleaning it. Anyway, on top of that I am more fatigued as that is a common factor with an autoimmune disease. So add up all the above plus constant fatigued and church services all week = an ostomate -chick -trying- her- hardest- to- attend- her- favorite- week- but- take- care- of- herself. Not easy.

This week really made me reflect on two things: 1. How God suffered for us in His last hours, specifically Good Friday. And 2. How my dad would handle his medical conditions during his favorite week, Holy Week. Now, anyone that knows me, knows how much I hate comparing as clearly I would never compare myself to God as He suffered WAY MORE than I could ever. And as for my dad, he had way more medical conditions than myself. But, during Holy Week I couldn’t help think of all the above. I would get very emotional every time I thought of the pain and agony that our Lord Jesus Christ went through of my sins and here I am trying to wake up daily & make it out of bed before 1pm (no, not because I am lazy, because that is my current life with my condition). And than, my mind would constantly go to my dad in how despite his medical obstacle and they were many, he would always push himself, more than he should have at times. My point is, I was slightly frustrated that I had these certain requirements/restrictions that didn’t allow me to attend Holy Week to the max as I once did in the past before my UC.

It’s not kosher for me to not be able to fast like I use to, or drink water & eat during Palm Sunday, Good Friday, & Easter Eve. All things, I am not use to but ironically would make my father do (or at least try, the apple doesn’t fall far from the tree when it comes to being stubborn:) ). I am sharing this because, I use to think fasting was the be all end all but when one can’t participate in that, you have to find other means to spiritually feed your connection. I personally found prayer and trying so hard to connect with God and moreover, understand His will for all I have been dealing with. I still struggle with the constant, “why me?” and “I wish I had my “old” life back”. I mean it is only human to have those feelings. But moreover, I was upset I couldn’t fully devote myself to Holy Week because I had to take care of my health. Something, I am familiar with for my dad but not for me.

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One of my favorite passages in the Bible

Expressing all my thoughts dosen’t however make me doubt the love & understanding my Heavenly Father has for me. I mean He created me and knows my worries & thoughts before I even stand each morning to tell Him. He knows my every step before I take them. He knows what I can handle even if I have a hard time holding my cross. So, I know for a fact He understood that I couldn’t be that Moniqua I was when I didn’t have UC or when I was in remission. I knew He understood that I had to constantly drink water during the long services and go outside to eat a snack, I knew He understood that I would miss some services. I knew He understood everything because He knew before I knew. But, it didn’t take away from me just wishing.

But, through God’s guidance, I did it! I conquered my first Holy Week with and ostomy bag. It wasn’t the easiest but it wasn’t the hardest. I listened to my body, took care of myself & health, and still attended what I could. It’s not how much you do, it’s how you do it. And that is with life in general.

xoxo

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