“If it’s not broken, don’t fix it”

With my sweet angel: Pre-life changing events. He’s always with me, carrying me through it all.

So back to my UC journey…

January 2010 was the year that changed my life yet again. So, I’m diagnosed with this unfamiliar disease. All I knew is that my diet had to change meaning, my obsession for coffee and salad had to come to a stop (devastating) among many other things. There is no manual on how to deal with this disease, no GI Doctor, nurse, or book can prepare you for what your life will turn into. You can have all the love and support in the world and trust me I did but somehow you still feel all alone and scared.

The first year is the hardest year for many reason: first, you are learning to TRY to accept this new life, secondly, finding the right GI doctor (went through 5 different ones in a year just to get to the one I have today for the past 7 years–was worth it) chemistry is key, thirdly, understanding and educating myself on this disease, and lastly making it part of my life as a whole. At the time of my diagnoses, I was in college so my social life plus education was very important to me. I’ve stressed this before and I will stress it again, my mom and sister were my backbone, rock, and biggest support system. They came to all my doctors appointment, got books that my sister would read to learn more about UC, they educated themselves, and did their best to make me happy. Despite my emotional state of feeling down and almost depressed, my mom, sister, guardian angel, and God are who got me through that difficult and challenging year.

As the year went on, I slowly got use to my new life style of eating white carbs, lean protein, and Ensure (UC’s versions of a milkshake, lol). I was being managed with steroids, oral and enema mesalamine. However, let me back track a little to my 3rd doctor in Mount Sinai–I recall my first visit so vividly, he wanted to put me on an IV medication and to me that was insane! Like how? It’s only been 6 months with this disease, why did he want to jump straight to that? I immediately said, “No, I’m not doing that”. That to me was a scary thing to hear and I didn’t hear those words again until Jan. 2016. Anyway, we agreed on the above medications. Just so you know typically, when first diagnosed OR when not in remission, we are automatically put on steroids, unfortunately. It’s like a band-aid to get the inflammation under control and lucky for me I was labeled as “steroid dependent” so they had to cut that out–which I was ok with! However, it wasn’t the last time I would encounter Mr. Prednisone, he’s been in my life more times then I can count.

So needless to say I got through my bumpy first year of highs and lows with finding my local GI doctor who kept me in remission for 5 years! His motto was “if it’s not broken, don’t fix it” which I loved. So, for those 5 years I was on: 4 pills daily of Lialda, one enema each night, and a bunch of vitamins. I eventually had to add a medication called 6mp which was the strongest medication as it’s even given to people who suffer from cancer as well. Due to that fact I was on it, I had to check my white blood cells level every 3 months. Thank God, everything was manageable with my blood cells even when it was low at times. Those 5 years for me were amazing… I’ll get into that more on a different blog.

I’m sharing my journey not to feel “bad for myself” but to bring awareness to this silent disease that many fight in silence, anxiety, loneliness, and fear. You see prior to being diagnosed, I thought to myself that God has already given me my hardest trauma of my life–losing my dad which til this day is the hardest thing I’ve gone through. But I was so naive that I thought I wouldn’t ever have to experience any other life changing thing–but I was wrong and even up until recently I was still wrong. God has taught me ALOT of life lessons with losing my dad and my UC journey and the first lesson has been: faith. To faithfully know He who made me beautiful inside and out knows exactly what He is doing. My life from the day I was born was beautifully made and even until now. I may not love every step of my journey–actually many times I hate it but I still would not change a thing. My UC has made me who I am today and it’s my cross I will hold in my heart forever…

xoxo

It’s the little things

Enjoying life’s “now” moments…

Today was one of those much needed fun-filled day with my better half. I’m about almost a month post-op (crazy! But amazing, thank God) and I’m slowly getting my groove back on! It felt so good to dress up, put on make-up, style my (crazy) hair, and enjoy a sweet filled day with the hubby. Ever since I’ve been out of remission, it’s been very hard for me to go out because I would be so anxious of needing a bathroom immediately–not a fun feeling. But after surgery I can enjoy the simple freedom of not worrying about a bathroom (only to empty my bag-which still takes some time but pain-free!). 

Mikey and I went pumpkin picking (I know we’re super late, but oh wells!) and enjoyed just being together without any bathroom or pain interruptions. It was so refreshing to be with one another, laugh, hold hands, and just enjoy fresh air. Moreover, my heart was joyful to see my love happy to get back to our new normal. He’s been by my side and also suffered with me when unable to go out due to my UC/ recovery phase. Granted I’m still in it, I feel SO much better then 3 weeks ago, thank God. And although my journey of surgeries/ recovery isn’t over, it’s knowing we will get trough it because we have God, love, and each other. We then ran some errands and went to the mall. Because I’m still recovering I still get very tired and need breaks. Despite my many breaks, Mikey embraced them with a warm smile and kiss to reassure me that he understands. Those small gestures mean the world to me. We ended the night by going out to eat. I’ve been so nervous to do this but he encouraged me that it’ll be ok as long as I eat within my diet. And I did! It was such a great feeling to be in a different atmosphere and enjoy my simple plain chicken sandwich with him by my side. Granted I felt so anxious and overwhelmed but I knew God would allow me to enjoy this special ending of my night. 

You see it’s the little things like today that made our hearts continue to grow deeper with one another. It’s these moments I get to share with my best friend that makes my heart leap for joy. We both needed this day not to escape reality but to remember that with all the hiccups in life, there is always time to enjoy life’s beauty with the ones you love. I may have not been able to eat that homemade cinnamon donut (gosh I wanted to eat 10 of them lol) or have a drink with him at dinner (at least not yet- cause I know I’ll get there) but I had an unforgettable day.

Thank you, Mikey. Thank you so much for holding my hands so tight through this journey. For giving me your love and reminding me that I will get through it and the light is near. Thank you for being my ride-or-die…I love you so incredibly much. 

I ended the night by making a special friend—meet my fellow ostomate, Pumpky

Xoxo

It’s ok not to be ok

Mr. Safety in his bag

I want to share my frustrating experience I had today.

Ever since my ileostomy surgery and now having a temporary ostomy bag (God willing) it’s been one huge adjustment to say the least. I have my high, happy good moments and then my low, sad frustrated days. And today was one of them. I feel at times I always need to be strong, positive, and thankful. And I am, trust me. But today, more then ever I’ve learned it’s ok to allow myself to have times of confusion, frustration, doubts, and just crying sessions. Those emotions don’t make me any less positive, strong, and thankful. God made me an imperfect human, He made me personally a sensitive one at that. So this whole journey hasn’t been the easiest, naturally so. 

So, back to my experience today that caused me to know it’s ok to not be ok. I was suppose to have my ostomy nurse (whom I’ve only met once from 5 home visits I’ve already had) come see me with a general nurse (whom I’ve been seeing and is great but does not specialize in ostomy bags). However, my ON (ostomy nurse) did not come although she stated to me Monday she would. I ordered new products to try to see if they will be a better fit for me. The overwhelming part of this journey is trial and error on every aspect! So, I was looking forward to the ON coming to show me if this product may be better then what I am currently using. But since she didn’t come, the general nurse and I had to figure it out. Naturally one would say well “yea you need to figure it out on your own anyway”–I get it but easier said then done. I’m only 4 weeks out post-op and this is still very new to me and my world as a whole. So to try to figure out a new product and how it works without the ON was like making coffee with out coffee beans to me. We get to sealing the bag on (it’s a 2-piece application) we couldn’t figure it out for the life of us and on top of that the new product was just so bulky that I felt it would be uncomfortable for me and wearing clothes. I kept looking at my husband to indicate to him I hate it and want it off. However, I felt bad because I saw how frustrated my nurse was as well and moreover she felt bad she couldn’t figure it out. It clearly was no ones fault, as her and I were both learning without a teacher…I made the decision to go back to my old bag. The process and frustration may seem very small and unnecessary to discuss but to me it is because it’s still all new to me. When removing a bag, that on its own is a process, and applying many things in prep for a new bag is also a process. After the nurse left, I cried out of frustration. 

I spoke to someone after expressing my frustration that the ON did not come and this whole thing at times just gets to me. They gave me great advice but at the moment all I wanted to hear was “it’s ok not to be ok”. And that’s what I realized as I sat in my room crying my eyes out. It’s ok that I got frustrated, it’s ok that I expected a better outcome, it’s ok that I didn’t want this bag on me anymore, it’s ok that I wanted to have my “old life” pre-UC back, it’s ok that I wanted to feel through my emotions. All the above doesn’t mean I’m not strong, positive, or thankful because I AM. These moments of feeling defeated are not defeats but rather reminders for me to know I’ve gotten this far, the road ahead of me will still have bumps but will also have an ending of happiness because I’m still choosing that as my ending. 

So, allow yourself to always feel all your emotions. Just don’t allow it to determine your outcome. I’m still here, thank God and I will be good at the end of it all. Thank you God for these dark moments that become enlightenment and precious steps towards succeeding. 

Xoxo

Hello, It’s Me

Allow me to reintroduce myself, my name is Ulcerative Colitis and I’ve always lived within Moniqua’s colon. But did not make my appearance until the Summer of 2009.

As I mentioned before the year of 2009 was NOT my year of happiness as I lost my rock and best friend. But nevertheless, it was a year that would still show me more surprises. My Mom, sister, and myself went to Egypt in May of 2009 to visit my Dad’s side of the family since they were unable to make it to his funeral. Our whole vacation was a month-long. In that month, we did many things, things my father would want us to do–in a crazy way it was more of a therapeutic visit for us, as we have so much love and memories in Egypt from since the day I was in my mother womb (no joke, she traveled to Egypt when she was about 6 months pregnant with me–lol) So needless to say, Egypt holds very special place in my family’s heart.

Anyway, about 2 weeks into our trip, I get this extreme abdominal pain, more painful than I can describe. I thought it was something maybe I ate or I was getting sick, either way I had no idea what or where this pain came from. I just knew I needed instant relief and I got just that. You see in Egypt, Pharmacists are more like Doctors and will come to your home with any medication you may need. Lucky for me, we had a close family friend who was a Pharmacist and owned his own pharmacy. He came to where we were staying and brought what I call, the “miracle butt” shot –no joke, in seconds I felt so good! However, this feeling came back AGAIN 2 weeks later and again I received the “miracle” shot.

Back in the States and thankfully no abdominal pain…or so I thought. December 2009, the attack came back, it would come in small doses, so it wasn’t enough for me to pay too much attention to it. But as time went by, the pain would slightly increase as well as side effects such as: discharge of blood. So, I went to my primary physician (who is my angel on earth, close family friend -I literally LOVE her and call her for everything!) she wasn’t sure what it could be, maybe a tear but she said to monitor it and if it gets worse we’ll need to do tests. So, she gave me a cream to use and I figured, “ya it’s nothing major, this cream will fix everything”.

January 2010–you flipped my world upside down (punch in the face to you). So, clearly the cream was no healer because my symptoms got worse by like 100. Sitting on the bathroom for hours in excruciating pain, losing a lot of blood, screaming due to the pain, nausea,weight loss and just overall fatigue. I would try to get on with my days, even push myself to make it to my classes, those days were hard especially when I was in the car and would get an attack and have no bathroom to turn to. I finally met with a local GI doctor but didn’t feel she knew what she was talking about but I just stuck it through and scheduled a colonoscopy towards the end of the month. Which in hindsight was too far for a person dealing with so much pain.

I remember the day so vividly, I got up for my early class to get ready. My Mom went to church and my sister happened to be home (thank God). I ran to the bathroom, I figured it wouldn’t take too long til I got off the toilet but boy was I wrong. I was literally running back and forth and ended up being on the toilet for 2 hours in SO MUCH pain! My sister couldn’t bare to see me in that condition so she gave me an ultimatum either she calls 9-1-1 or we go on our own to the emergency room. I begged her and told her I’ll be ok that I do not want to go to the hospital. Deep down inside I was terrified and after my Dad passed away in that same hospital I would go to, I just didn’t want to go back to a place filled with dark memories.  However, I went to the ER not willingly but at least not by an ambulance. My Mom came rushing to the hospital -it was my mom, sister, my good friend Yostina (who took my sister and I to the ER) and myself, just waiting to be admitted. It honestly felt like a whirlwind of emotions, I couldn’t believe I was in the hospital. Call me naive but at the age of 23, I felt untouchable and that since I already faced a huge trauma in my life, there was no way I would or could go through anything else. So, as we were all waiting (felt like forever, ER’s take their sweet time), my sweet sissy decided she was going to diagnosis me with her WebMD app–results: Crohn’s. We laughed because if you know my sister, she always thinks she’s right–well she sure wasn’t off! Who would have thunk an app would be semi-right?!? We were some what familiar with the disease because my cousin had and still is suffering from it for over 20 years.

They call my name, take my vitals, I put on the (awful) hospital gown, and then things start to get real. They did literally every test on me and found nothing. “We are going to send you home since all the test came out good” I looked at the doctor and said “No, it took a village to get me here, I’m not leaving because clearly I’m not well.” Next, thing I know I was admitted (2nd floor, 2 floors above me was where my father died). Early morning they start prepping me for a colonoscopy–if you’ve never experienced a prep, do me a favor-DON’T! The worst ever, basically you drink the worst cocktail to clean out your colon (there’s gotta be a different way to do this–but nope there isn’t as I’ve done it 34334 times). Anyhow, next day I have my procedure done and lucky me, I was blessed with UC. Well hello, UC, I have no idea what you are, what you will do to me, and what this will mean for my life/future…I just knew that this new chapter of my life was going to be one with many road bumps, sunny days, cloudy emotions, frustrating times, trail and errors, cries, screams, but above all SO much love and support from my 3 soldiers: Mom, Mia, and my Angel-Dad.

To be continued…

 

PS- On June 10th, 2018 , I will be participating in my first ever walk for Crohns and Ulcerative Colitis. I am super excited to be part of this great cause as I will not only be walking for myself but for many close and dear people in my life (you know who you are). This disease is invisible as I mentioned before but deadly within us-so help me “Take Steps” by joining my team or contributing any small amount you wish to. It truly isn’t about the money but rather to bring awareness and come together for all those who are suffering. xoxo

Team: Beautifully Made: Inside & Out

Catch 22

The year I didn’t see coming…

22 was ironically one of my favorite years, despite its unexpected ending. My family and I went to Jamaica with our close family friends which by far was a vacation we will never forget on so many levels. My parents were big believers on taking big vacations every summer, I’ve been blessed since a young age to see the world. The vacation started off rocky because my Dad’s shipment of dialysis supplies went missing and were not in the warehouse for us to pick up.. I remember that day so vividly, I sat in the van with my Dad in scorching hot weather as my poor Mom and sister frantically looked everywhere to find these boxes. We all prayed desperately to all the saints, after what seemed like 20 hours, they were found –thank God! Our vacation was able to commence–we truly had such a great time in every aspect despite my Dad not feeling well. I learned so much about his love for the water & beach, he was a real life merman. We laughed so much on that trip, the type of laugh that would make my Dad’s belly shake up and down–ahh I can just picture it now.

Fast forward to end of December 2008, my Dad went into the hospital or as I had like to call it our “3rd home” (church was our first, then our home, then the hospital)to get a simple procedure done. Well, God had something else planned for him, something that none of us were prepared to accept or even handle. The procedure never took place due to one thing leading to the next. Let me backtrack a bit-you see my Dad from the day I was born always had health issues so this wasn’t anything new to me…unfortunately. Although it wasn’t new to me, it didn’t mean that my inner-child wished this wasn’t my “norm”. All I ever wanted was for my Dad to be healthy, for us to have family dinners, and for the pain he endured to end once and for all. Now, don’t get me wrong regardless of his health declining, we still had the best memories. Celebrating every birthday, anniversary by going out to eat at one of our 2 favorite restaurants: Olive Garden (I use to memorize their “Happy Birthday” song-true story)  or 7 Hills (no longer open). Laughing for hours at silly things my sister would say or try to read in Arabic, making my Dad laugh on the expense of my sister and I saying who has the bigger nose, and us getting a kick out of my Dad scaring my Mom. And the biggest of all, whomever birthday it was (even his) he would go into that persons room, wake them up (more like he woke up the entire house haha), sit on their bed and yell the song “Happy Birthday” to them. He truly was the joy and happiness to our family.

Days turned into weeks which turned into months, 2 months to be exact in the hospital. You see it’s not that easy to articulate how one feels when their loved ones are literally living in the hospital. You become so numb, like it’s the norm. You mean celebrating Christmas in the hospital inst normal? Well it was for us. That is all I knew. Having my amazing Mom sleep daily next to my dad, day in and day out. She literally never left his side. We all deal with illness’ differently, there isn’t this manual that teaches you one way of dealing with it, I ran away and masked my emotions by going out and not facing reality. No, I wasn’t oblivious to my Dads condition, I knew the deal, I knew the end was near but how the hell does one cope with it?? I didn’t want to face it, this was MY Dad, I was his third hip since birth–how can my world be without him?! I refused to indulge in the idea so instead I would run, run so fast that my heart wouldn’t have time to feel the pain.

February 10, 2009 (I still hate you)…my world as I knew it flipped upside down. The night before my sister had a really bad stomach virus so a close family friend came to stay overnight since my mom was always with my dad and I had class early in the morning the next day. I set my alarm for 6am but before my alarm could go off, my sisters friend came rushing into my room saying my mom called..”she wants me to bring you guys to the hospital immediately”. I figured he got intubated again so I kept insisting that my sister stays home and I would go. Once things settle down and she felt better she can come but we both knew in our heart it was more than that. My sisters friend rushed us to St. Peter’s, we ran to the room. My heart was pounding, hands sweating, breathing heavy, and silence everywhere. We didn’t know what to expect–and then I see him, intubated, my mom crying, nurses and doctors frantically running in out of the room. TIME STOPPED AS I KNEW IT. I ran to my Dads beside and sobbed like a child while holding onto his hand tightly. I begged him to wake up, “I need you Dad, please I need you!” I begged him not to leave us, there would be no us without HIM! The day was going so slow yet so fast-I wanted to hold onto time but knew time wouldn’t hold for us. After 7 hours of prayer, confusion, decisions, cries, screaming, medication not working, we as a family decided to allow the love of our life to pass in peace and in dignity. February 10, 2009 at 2:10pm was the last time I physically held my hero. My heart stopped and from that moment on, my life took a turn, multiple turns…

Dad, you were the rock of this family that instilled so much faith. You taught us to love unconditionally, to put others first, to give with our hearts, to forgive and forget. You showed us the meaning of dedication to not only your family but your church and congregation. You were the epitome of a true faithful father to all. Your heart was so so big, full of purity, sensitivity, and wisdom. You were a father to all but always made sure you put us: Mom, Mia, & me first no matter what. You were and are one of a kind, God truly made you beautifully inside and out. Despite your illness’ you took them with strive and carried them as your crosses. You made your sickness become your strength. 22 years was not and will never be enough, I will selfishly always want more. Every struggle and joy that I encounter in life I find myself looking for you. I look and yearn for your bear hugs that would fizzle any worries, your words that would calm a storm, your smile that radiated so much love and joy, and just simply finding you in your favorite recliner chair sitting in silence. I am forever thankful to be called yours. Oh Dad, I miss and love you more and more each day, more than my heart can handle at times.

Thank you for constantly loving me….love always,

your daughter who misses you