Peace out, Rectum!

You wrecked me, rectum. Now it’s time to have you out!

So, many of you may not know this, but, my rectum is also diseased and still inflamed.  Typically when you have UC, it effects your large colon as well as your rectum. Again, everyone is different. When I had my first surgery, an ileostomy, my surgeon told me he would try to remove both my colon and rectum but all depends on how bad both are. Well, my colon was falling apart my first surgery so it wasn’t possible to remove my rectum at the same time. The last 7 months, I’ve still been bleeding from my rectum which is normal since it is still intact. However, the pain is not nearly anywhere it was when I had my colon. It just a bit of discomfort with a little pressure. Well, my rectum of 31 years will be out of me May 1st, God willing-see ya never!

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This is what I currently have, an ileostomy. Images taken from: https://www.dovemed.com/common-procedures/procedures-surgical/ileostomy/

May 1st, is my 2nd major surgery, a loop ileostomy. This surgery, I will have to get cut rather than laparoscopic like I had for my first surgery. The reason my surgeon prefers cutting me for this surgery is because he is doing 3 things: 1. removing my rectum 2. creating my J Pouch (which is elongating my small intestine & bringing it to my anus) 3. doing all those, he is getting close to my reproductive system so therefore, he wants to make sure he is very diligent and precised with doing this whole operation. I will get into my surgery more in depth in another post. Alot of things are occurring but oddly enough I am not as anxious as I clearly was for my first surgery. Don’t get me wrong, I am still anxious but excited to get phase 2 done & over with, God willing. It’s so crazy to sometimes think 2 major organs ( I think a rectum is an organ? Right?) that have been a part of my life for 31 years will no longer be in my future. Yes, I know it’s not a human, trust me I know what the pain of losing a loved one feels like but this in a sense is a different “loss”. It was there when I was born, lost my first tooth, celebrated my birthdays, graduated HS & College, went through the pain of losing my father, moved to LA and got married with these 2 organs and much more. In a sense it’s bittersweet and sad to let go of what has given me so much pain yet played a huge role in my digestive system.

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My 2nd surgery, loop ileostomy. Removing rectum & creating my J Pouch. I will still have my ostomy bag for at least 12 weeks until my 3rd surgery. Images from: https://www.pinterest.com/pin/246501779578960048/

As I sit here writing this blog, I can’t help to think where I am in life. Life is so unpredictable as it is meant to be. God’s plans for me are set in stones, I am just here to do my best to turn each page to my story of: Life. But, I still can’t help at times to think about my journey from a baby to now. I always say, I’m naive. I never in a million years thought I would lose my father at 22, despite how sick he always was. I just always thought, he will bounce right back and come back home and we as a family will look past these days. Same with my health, I always thought after losing my father, that was my only cross but than getting UC I thought “ok, I found medication that works, I will be good for life”. But, as I turned the pages of my life, I learn each day that my endings aren’t God’s plans. I would lie and say I wish sometimes He let me choose my paths not because I don’t trust Him but because the pain becomes too much to handle. Losing my father & dealing with my autoimmune disease are major struggles that are sometimes hard to face.

I am learning daily God’s amazing plan for me and my future. One that is filled with blessings in disguise. Every time life gets too heavy for me to push through, He literally comes to my aide to assistant me and show me He will never leave me. Again, it’s not that I don’t trust Him, I truly do. But, between my anxiety & always falling back to thinking of life pre losing my dad & UC, I sometimes just daydream of wishing. But, than I snap back and remember, I wouldn’t change my medical journey for anything as it has brought me so much passion and joy to advocate, educate, and shed light for others to know and learn. But, sorry God I can’t say the same for losing my Dad, kinda want him back. I’ll always yearn for my sweet dad. Especially with all I have been going through, having his words, hugs, and smile for comfort is deeply missed and needed.

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Anyway, this is a “see you never” rectum. You were good to me for a good deal of my life. It’s not your fault we couldn’t stay together. We tired but God had better plans for me that doesn’t involve you anymore. You’ve taught me alot, besides being painful (lol), you taught me how to lean more on God, that I am stronger than I think, and that I have the best love & support squad ever! I’ll miss you but I am ready to move on from you…sorry, not sorry:)

See you on the flip side!

xoxo

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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

Anxiety

Very common yet so misunderstood.

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The mind of someone who deals with Anxiety

Just a disclaimer, I am not a medical professional guru when it comes to the technical aspect of anxiety. I am speaking from my point of view, someone who deals with it. Anxiety is a funny thing in that it has so many faces and levels and no matter how hard you try to run from it, it suctions you back in. At one point in my life anxiety entered my life, uninvited. I like to say it started since I was in the womb. As they say, babies feel a mothers emotions. Now, I am NOT saying this is my mom’s fault, but it makes sense as my mother was dealing with a lot when she was pregnant with me. My fathers health, being a mother, a full-time servant to the church, my dad’s right hand, and life as whole. Any person would feel overwhelmed and anxious.

When I was born, I was born into a loving family. But, a family that was different than many other families as I have mentioned in my previous blog posts before. The impact of my dads health, him being a priest, and dealing with growing up in a community that loved my family but struggling to want him for myself were other factors of my anxiety. I had other personal/academic factors that also contributed to my anxiety (i.e being overweight). All these puzzle pieces came together and formed my masterpiece called, anxiety. I exposed it in different ways throughout my life. Whether it was crying, shutting down, knots in my stomach, sweaty hands, over analyzing, and being an emotional eater. Despite how I dealt with it, I still managed to keep the monster quiet and to not allow it to take over my life.

I was extremely good at hiding when I was anxious especially as I got into High School & College. I never wanted my friends (even my closest ones at the time) and people I would meet to think I was “scared” or had something that would stop me from little things like riding a roller coaster. So, I would always suppress it so it didn’t interfere with my life. I mean, with everything I was going through personally, I didn’t have time to deal with this unwelcome “friend”. So, the best way I knew how to deal with it, was by closing it off with temporary fixes (shopping,  going out, eating).  But, again my anxiety wasn’t at it’s highest which is why I was able to mask it.

The year my father died and prior to his death, is when my anxiety creeped up more and more. I would have sleepless nights and every time I would see my mom or sister calling me, I could feel my heart racing as I would anticipate the worst on the other end. Even, when I would visit him, I felt time racing against me as I would walk into the hospital. I was always anxious to see what that day held for him and our family. To be honest, I dealt with it in that some days I couldn’t stand seeing him in that state so I would leave early and hide my anxiety and pain by going out with friends. When dealing with life changing events, there is no manual in how to deal with anxiety. We all deal with it differently.

Today, after 2 years of dealing with the decline of my health & my overall journey and having surgery, my anxiety truly became the main character of my life. I could no longer hide, mask, suppress, or “act” like I can handle it. The truth was, this past summer is when it took over my life. I woke up anxious, my whole day was filled with anxiety, and slept with the monster. Yes, the last 31 years of my life has played a huge role into my anxiety but I must also make it clear in that when you have an autoimmune disease, one that is chronic and invisible, anxiety is a MAJOR asset unfortunately. I can confidently say that it’s the same case with all who suffer with any disease, in that they also suffer with being anxious 24/7.

I was dealing with being very ill and learning to cope with my anxiety being heightened. It felt like a job and I felt like a prisoner in my own body. I hated the feeling. It also didn’t help with my disease as anxiety can increase the side effects I was getting already. I hated when people would say “just don’t be anxious” its not that easy at all. Don’t you think I would want to shut it off like a light switch? It would be one less thing to deal with. I tried therapy and it just wasn’t for me. I would cry daily because of the feeling that it took over me. I hated the idea of taking something for it, I was uneducated about the medication end. After much prayer, talking to many people and getting the love and support from my family, I decided to finally shut this monster once and for all.

Just as I can’t cure my autoimmune disease, you can’t cure anxiety. But, I am here to share my story because I want others who may feel alone to know you aren’t as this effects many people. There isn’t a face to anxiety, we all suffer from it but others like myself, suffer from it more to the point I needed to take something for it and I AM PROUD! I will no longer be ashamed of it or ever again try to hide it. And you too shouldn’t be ashamed. There are so many options out there, you just have to ask and find the right one for you. I still get days where my anxiety is more than others (like when flying or when I feel a major event is coming, i.e the day my dad died, my next surgery, etc) but, I now know how to deal with it and do what I need to do to get it under control.

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There is no certain face to anxiety. This is me happy that my anxiety is under control.

Anxiety doesn’t define me or control me…anymore thank God:)

xoxo

My Journey with my Cross

My life journey started from the day I was born…I was beautifully made by him, inside and out.

But to say it has been an easy journey would be a lie. Instead, my journey has been one that is filled with cries, laughter, anxiety, confusions, blessings, love, and faith.

My name is Moniqua Demetrious and I was born on September 18, 1986 to a loving, supportive family. I was born into a family that cared for me tremendously. However, my life was different than most children surrounding me. I was immediately introduced to a father who was special and different than most, who was the founder & priest of St. Mary’s Coptic Orthodox church on East Brunswick, New Jersey. Because he was a priest, I had to share him & my mom unwillingly with others who loved them just as much as I did. I also met him with health issues that would get worse each year, which oddly enough felt normal, since it was all I knew. Crazy to think.

My life has been a roller coaster filled with overwhelming love– my father & best friend passed away Feb. 10, 2009; my world crashed. I was 22 years old when he passed away. I was then diagnosed with Ulcerative Colitis at the age of 23 (known as “UC” for short) in Jan. 2010; my world crashed yet again. Ulcerative colitis is a “chronic disease of the large intestine, also known as the colon, in which the lining of the colon becomes inflamed and develops tiny open sores, or ulcers, that produce pus and mucous.” The struggles and life’s “promises” became so faint and untenable that I was unable to see the light at the end of the tunnel.

Fast forward to 4 years–I married my best friend and soulmate on May 31, 2014. Life was finally getting sweet and on track. Prior to that, I graduated with a Bachelors in Social Work but later on went to Los Angeles for fashion school, which is what I love to do.

UC and now my ostomy has truly been the crosses of my life. An ostomy bag is “prosthetic medical device that provides a means for the collection of waste from a surgically diverted biological system (colon, ileum, bladder) and the creation of a stoma.” When I was first diagnosed with it, my faith was tested. I felt God turn His back on me again, especially since I had just gone through one of the biggest hardships of my life: the loss of my father. I found myself once again in a dark place, a place filled with sadness, confusion, anger, disappointment, and loneliness. I couldn’t understand why God put me through this medical disease. This was a disease that has no cure and doctors don’t know how one gets it since it’s an autoimmune disease. The first year was tough and I was a bit distant from God and the church due to being mad at God for “taking” my father and getting this unfamiliar health condition.

My mom and older sister were my backbone during this difficult time in my life. They were my voice of reasoning when I wanted to give up, and they were my strength when I was too weak to keep going. Despite my lack of faith, their strong faith in God showed me with time that He was all I needed. I got through the year and found the right medications that kept me in remission for 5 years. But because this disease is unpredictable, the “monster” came back a year into my marriage. And boom, I was faced with another struggle, marriage and my health. Being a newlywed on it’s on takes dedication and time but to have my health in the mix is a lot of work.

So, again I was hopeless: but this time, I cried out to God to help my husband and I get through it. I learned from that moment until today the meaning and power of prayer. I couldn’t then and I can’t now get through my cross without leaning on Him. And of course the overwhelming support & love of my husband.

Today, my UC has failed on me the last 2 years since all meds have stopped working, but the last 9 months have been the roughest. I’ve learned more about my health, purpose and Self than I ever thought I could. I’ve recently underwent my first of 3 surgeries in October 2017- phase one, ileostomy- removal of my colon (see you never!) and now have an ostomy bag (basically collects my poop-I call him “Safety”). May 1st, God willing will be my next surgery, phase 2 aka loop ileostomy- removal of rectum and constructing a j-pouch. I will still have an ostomy bag for at least another 3–6 months after.

My journey isn’t over and will never be. This will forever be my cross and I’ve chosen even when days are hard, and there are many, I still choose to share my journey openly and honestly. To show others that God has not left me. That even in my low days, He lifts me up. My guardian angel, husband, family, friends, faith, and UC/ostomate community has helped me in so many ways. Because of all these factors it has pushed me to start a blog and instagram account to advocate and bring a voice to this invisible disease, to help others, which has been therapeutic for me.

God made me beautiful in His image with all my imperfections (inside & out)-I may not love them at times but I love to share them in hopes to help others. I don’t know why God gave me this but I do know it has shown me that I am stronger than I think, that I have so much love surrounding me, that I love raising awareness, and that God and my angel are always holding my hands through this journey. Even when I think I can’t handle my cross, God constantly shows me I can. He gives me the strength I need to keep pushing every day. Not a day goes by where I don’t thank Him for the things in my life, even when I just do not want them. But then, I realize He has a given me a purpose to share my cross with others, and to learn to be thankful in every condition.

Posted on: Coptic Voice

Thank you again to Coptic Voice for publishing my story. This blog is such an incredible platform where they display different matters in the Coptic community. I was truly blessed to had the opportunity to share my journey.

Xoxo

A Letter to Heaven

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If letters can be sent to heaven, I would send one every second of the day to you.

Dear Dad,

Where do I begin? It will be 9 years tomorrow that you left this world and went to heaven. February 10, 2009 was the day my life flipped upside down. It’s a month I always feel creeping up from just my emotions changing and feeling the pain starting to raise to the forefront. Dad, this letter is going to be everywhere because my mind constantly feels like that, just scattered since I lost you. Sure, “time heals” but it doesn’t erase the memories, pain, the fact I can’t just press the rewind button just to have you back for a second (who am I kidding, I selfishly want you back forever), and the agony that I go through every time I think of you. The reality is, reality hits you right in the face and makes sure you feel it all. I remember the day like it was yesterday that you died, I relive every second of it and get weak in my knees. I couldn’t “fix you”, it was just your time but it wasn’t mine time to let you go. I was young. I needed you, I still need you.

Oh, Dad so much has happened since you have gone “home” to the one you love. I know you see it all but its not the same as having you physically here to just run to you in times of hardship, to get your bear hugs in times of worry, to hear your wisdom in times of trouble, to hold your hands in times of fear, to hear that contiguous laugh in times of joy, to see that radiant smile in times of celebrations, & to hear your angelic voice in church that would ease my heart(still my favorite voice of all time). YOU are my heart, my heart that is missing. Dad, I needed you physically here the last couple of years with everything I was going through medically. If it’s one person that understood pain and dealt with it with so much elegance, it was you. I haven’t gone through a quarter of what you have been through in my 22 years of having you on earth. But, you know me more than anyone and how big of a baby I am when it comes to this stuff, I SELFISHLY WANTED AND NEED YOU TO BE HERE. I get so sad at times when I can’t speak to you to calm me down. I don’t mean to just give you all the negative but you were and are the rock of our family. 

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I don’t care if it’s 9 years, to me it’s as though it just happened. Others may have forgotten you, but one thing I will forever promise you is that Mom, Mia, & Me will always speak of you and your legacy no matter what. It’s crazy to think, but I always say, I wish it was the day you died because I would have felt you, tasted your love, and had the lingering smell of you in my nose…9 years really removes all that and I get so upset because I yearn to have those treasures that people take for granted. Dad, I’m trying to channel you lately, like WWDD(what would dad do?) and I find I fail often because there is none like you. You were SO special and unique. Call me biased, I don’t care but you are by far the best father, priest, man to have walked this earth. You taught me the meaning of so many things that only a special, beautiful, kind-hearted, God fearing man, who loved whole heartily was able to teach me.

You are my best friend, you just knew me without me having to speak. We had this silent language that no one else shared. We had a funny way of communicating, I would speak to you in English and broken Arabic and you would do the same but vice versa. We would laugh for hours because at the end we didn’t get anywhere. I am smiling now just thinking of those moments. You had such a silly side of you that only the family saw that I hold so close to my heart. Anytime I hear a liturgy of yours or a small sermon you use to give, I just close my eyes and try to feel you and be in that moment. When I get that question, “If you could have a super power, what would it be?” I immediately say to turn back time. Not many people would but, I would because than I can freeze time and stand still in that moment with you. Dad, I just miss you if the message hasn’t been clear enough. I miss you every second of my day. I’m over the moon about you. I tear up once a day either about you or my health journey and I don’t care. It’s my way of sending my tears to you and cleansing my heart.

This letter can go on and on because there is no limit when it comes to talking about you. But, tell me, what’s heaven like? I can see you now just singing your heart out 24/7 and jumping to the gates when someone you loved so much passes away. I can see you waiting anxiously to give them a tour of your new home. Do you feel every pain I feel? I know they say you do but Dad, I want to feel you more. I know so many people pray to you but your daughter is selfish again and wants you all to herself. How amazing is it to be with God all the time? I know you wouldn’t come back if you had the chance but, I would jump back into the arms I love. Who do you hang out with most of your days? I can see you now, having everyone gravitate towards you. You had that here on earth even with your quiet demeanor. Everyone that loved you, loved being around you always.

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Your family misses you, Mom, Mia, & Me.  We hold you forever in our hearts and talk about you constantly. Jack, is a mini you with his singing and knows you as “Gido in heaven” he is so much fun, full of energy, and has a silly side like you did. He would have been by your side in the alter. And Livy, shes amazing Dad-has the purest baby heart. She’s obsessed with Jack, kinda like Mia was with me 🙂 She smiles all the time, nothing bothers her (yet), and she too loves to sing. Their crazy Aunt Monka always has dance parties with them. I know you’ve never formally met Mikey but I know you know him from up there. He has been my rock through my medical journey, he would have been the “deacon” son you always wanted, haha. Mia is still the funnier one (but I’m still the stylish one lol) and such a great mom, wife, and sissy.  And than there is Mom aka Kooky, still our superwoman, amazing, God-fearing, strong, loving, caring, will do anything for any of us anytime. She is simply the best woman and with every great woman has a great man.

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Well Dad, I’ve spoken your ear off per usual. Continue to keep us all in your prayers. Continue to hold our hands through this life, teach us to be more like Christ and to love just like you loved. Your deeply missed that my heart aches. But, I will just forever and ever hold on to the memories. You are forever imprinted in my heart and soul. Until we meet again…

I love you so incredibly much, Deeg.

Love always & forever,

Your Mone-ya-ana-ya-mone-ya-A

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