The Cat’s Out of the (YARN) Bag!

December 26, 2018 By Nadia Fuad in baby, Blog Posts Tags: babe, babies, baby, baby on board, basic, beginner, bowel, bowels, breaking news, character, child, christmas, chronic illness, colitis, cravings, crochet, crochet tutorial, crocheted, crocheting, crohn's, crohn's and colitis, crohn's awareness, crohn's disease, daddy, emotional, emotions, family, family planning, fashion, fashion blogger, free crochet pattern, free pattern, growing, health, health issues, health related, how to crochet, ibd, ibs, inflammatory bowel disease, learn, little, mommy blog, mommy blogger, party, pattern, pregnant, red heart yarns, stitch, surgery, symptoms, teach, tutorial, uterus, video, video tutorial, we're pregnant, yarn, yarnie, yarnutopia 75 Comments

It’s no secret that my battle with my health has been mostly an uphill one. Numerous surgeries have taken their toll on my body for the past ten years as I continue my fight. My Crohn’s disease has to be considered in every facet of my existence. My life, daily decisions, activity, diet, my body, and my future are ruled by this illness and how it will affect my daily living. After ten years, it is “Normal for Nadia” to be at the mercy of this condition. It just is that way. Like a habit, living with severe Crohn’s disease becomes part of my routine.

Doctor appointments, daily meds, regular testing, procedures, and so many details have worked their way into the fiber of my ordinary existence. Even getting married in March was overshadowed by the very real possibility that I may end up sick or in the hospital on our wedding day. It’s just the reality of living with chronic illness. Fortunately, adrenaline was my friend on March 17, 2018 and it helped carry my aching body through the day without incident! Our wedding was the most glorious day ever. Sure, I paid for it afterwards, but I would do all of that 1,000 times over just to relive that beautiful day!

Hardcore family planning

Nate and I always knew we wanted a family, we also knew that it would not be an easy path to having one. Several months after getting married, we sought help from my doctors to find out if I can safely support a pregnancy since I have such a challenging health history. I underwent a series of tests, some incredibly invasive (dignity be damned). A team of specialists were assembled to oversee my care if we were able to get pregnant. According to all these insane tests, there was no reason, despite my health battle, that I couldn’t get pregnant. We were so relieved! We were aware it would be very risky; the warnings from the medical staff came across loud and clear, but we have confidence in the high-risk team overseeing my care. They were very realistic but also reassuring. I was facing my 28^th birthday, and although we weren’t aggressively trying, we weren’t being careful either. So, in early November–two days after my birthday–with symptoms that screamed that I might be pregnant, I went to the store and bought a half dozen pregnancy tests.

My internal dialogue was: “I just spent a small fortune on something I am going to pee on. Who cares!??? I need answers!”

It all comes down to a (+) sign

It was a Friday afternoon, November 9th. My friend Sarah was coming to town for a visit, and I was planning on picking her up at the bus station in a few minutes. I only had a small window to privately check out my pregnancy suspicions. So like millions of women before me, I peed on the stick and nervously waited through the minutes that could change everything. I was pacing, nervous and fidgety. How do you distract yourself for those moments without constantly checking if you have your answer? If “a watched pot never boils,” does frantically fanning a pee stick prolong the results?! Because that 5 minutes felt like a flippin’ lifetime!

The test read (+) and I freaked out! I called my mom on Skype immediately, and I was hyperventilating and crying and couldn’t get out what I needed to say. I completely freaked her out because she thought something tragic had happened. I couldn’t speak, and my dramatic reaction had her thinking the worst. I was able to show her the pregnancy test and get her expert opinion on what it was saying. (Like I didn’t already know, right?!) Were these tests saying what I thought they were saying? Of course they were, but I needed Dr. Mom!!! She talked me through it and asked me what Nate said about it…

Oh. My. Gosh. Nate!!! I had yet to tell Nate! How did I not think of that?

She suggested that maybe I should have called him first! Oh my goodness, absolutely! I was a bit of a frantic mess. Where’s my coat?! I’m wearing it. Where are my keys?! In my hand! I had only a few minutes because Sarah’s bus was about to arrive! I jumped in the car and decided to stop at his work! Woops! Was that a stop sign? Just kidding! I am grateful I didn’t receive a citation on the way to tell my husband!

We are having a baby… What do we do now?

Nate came out to the car and I had the test stick in a Ziploc bag. I told him I have to tell him something and without asking, he just said, “You’re pregnant.” I cried, I laughed, and I shoved the pee stick in the Ziploc at him and told him to look at it. We were so happy! He said he had a strong feeling. He knew. What emotions! So high, but then reality started to sink in like “What are we going to do now”? Even though we didn’t know what direction to take at that exact moment, we would figure it out together. We called my mom again from the car in the parking lot at Nate’s work. After talking to her, we knew I had to see my doctors first. We had to keep this quiet for a while. By all calculations, I was only about six to seven weeks along. Things were so precarious with my health and we wanted to make sure the pregnancy was viable and baby was healthy. We also needed to be sure I was fully healthy enough to actually support a pregnancy. On a scale from one to ten our emotions were off the chart. What ARE we going to do now?! GAHHH! WE ARE HAVING A BABYYYY!!

Game Face and A No Colon Surprise Party

Nate went back to work, and I had to pick up Sarah. How was I going to keep a straight face? How do I keep this from my best friend? Although I was busting to tell her to the point I was getting twitchy, I knew I couldn’t. I am the WORST at keeping a secret, God knows, and it was stressful to not blurt it out! I put on my best game face and decided to get it out of my mind (yeah, right!) and enjoy the weekend. Little did I know that the reason Sarah was really coming to visit was because my mom, Nate, Sarah and Nida were planning a surprise party to celebrate my birthday tied into a No Colon, Still Rollin’ – 10 years later party! WHAT IS HAPPENING!??? Saturday afternoon my entire family and all my friends surprised me and I couldn’t say a word to any of them! I ate three poop emoji cupcakes just from the stress of it all. Only Nate and my parents knew, and I couldn’t talk to them with everyone around! Again, ALL THE EMOTIONS!!!

Thank goodness for poop emoji cupcakes. That’s all I’m sayin’.

Well, it’s true! We’re pregnant.

I scheduled my first appointment and we had our first ultrasound. I knew going into this that it wouldn’t be easy. Nausea, heartburn, extreme fatigue, restless legs, extremely sensitive boobs that have grown 10 times their size, body pains off the charts, visits to the ER to check scary symptoms caused by adhesions from past surgical scar tissue, phantom sharp pains in my non-existent anus, my ostomy is shifting to the side as my tummy begins to grow, the scars on my tummy are being stretched, back pain, sciatic pain, vivid dreams and nightmares, itchiness, sleeplessness, aversion to certain foods, no appetite to ravishing hunger, even more profound vitamin deficiency (particularly folic acid and magnesium), chronic asthma symptoms to the point I need my rescue inhaler constantly and now a nebulizer, and more issues are plaguing me night and day, and I’m only past my first trimester!

But, it’s all worth it.

Especially at that very moment when we saw our baby on the ultrasound.

Suddenly, it all became real. We heard the heartbeat and we laughed and cried.

We called it our “little bean.”

We instantly fell in love.

Our baby is due in June 2019, and our hearts are so full.

What now, doc?

We had our first minor complication. There was a subchorionic hemorrhage (a blood clot) that was found on the ultrasound. The doctor said it happens in implantation, and unless I had excessive bleeding (I was only having some bleeding), not to worry too much about it, and it would be monitored. I also had to cease a bunch of my medications. In stopping the meds, I risk some complications, but I have been managing things pretty well. One medication I can’t stop is my biologic injection. I am so worried about taking it, but I can’t risk getting sick to the point it would put me and baby in danger. My team has warned me over and over not to stop it.

I have to be truthful, I was contemplating stopping my biologic injection. The grave warnings from all my doctors have me reconsidering as I face having to take it this week. There is no evident risk to baby, but to me, if I stop, it would be very grave. I could become too ill and not be well enough to sustain the pregnancy, putting both of us at risk. Every doctor concurs. I do have to stop taking it at thirty weeks into the pregnancy to best insure that baby comes into this world the strongest and healthiest it can be. I am concerned without the protection of any medication to control my disease, my body won’t cooperate. I am hopeful. I am optimistic. I am scared. I won’t lie, I know what I am facing, and I know it will be worth it, but I also know this isn’t going to be an easy journey. Nothing this wonderful ever is. I have learned this lesson over and over in my life; I am familiar with how this goes. I am familiar with the bargaining process.

Now we are three!

We are now in the planning stage. I am almost 14 weeks pregnant, and have been following all the doctors’ instruction and am closely monitored. I am also chronicling my pregnancy on The Bump Phone App! According to the app, today our baby is about the size of a lemon! I have regular doctor appointments both with my standard team as well as a high-risk OB-GYN in Rochester, Minnesota at the Mayo Clinic. I couldn’t ask for a better crew of docs overseeing our care! They are so thorough. My last appointment with the specialist was two hours! We are in great hands, and we’re hopeful that things will continue to go well. I just pray that I stay healthy and strong for our little sweet pea. My heart is so full and all I want is to provide the best for this tiny baby despite my challenges.

Merry Christmas to Us!

We told Nyle, Nabeel, Samantha and Des over Thanksgiving. We also went to visit Nate’s dad and gave him a special “Grandpa” shirt.

We also told Nate’s brothers that weekend, too. Other than immediate family and a couple close friends, we decided to wait and reveal our news to everyone else over Christmas! Our family and friends are elated, and some told me they “just had that feeling!”

Today, I wanted to share this with our YARNutopians now that our extended families and close friends received the news. Now, my crochet project list grows! Baby stuff galore! I already have some baby projects on our agenda! What an exciting year of crochet we have ahead of us! I hope to continue with our filming and projects as long as I can and will continue after baby’s arrival! We all have so much to look forward to in the New Year. Not only are we expecting a new addition, but my brother and his wife are also expecting a new baby in January! So many reasons to crochet! Haha! I am excited and filled with joy to share our news with all of you. Cheers to 2019! Thanks for being with us on this crazy and wonderful journey!

“You are so loved, little one.”

~Your Mommy and Daddy

~Nadia and Nate

Ten Years Later…

October 30, 2018 By Nadia Fuad in Blog Posts, Health Update, Uncategorized Tags: 10 years, 10 years later, bowel, bowels, chronic, chronic illness, colon, colonoscopy, crohn's, crohn's and colitis, disease, doctor visit, doctors, get checked, health, health related, healthy, i survived, ibd, ibd awareness, ileostomy, ill, illness, inflammatory, inflammatory bowel disease, nurses, ostomy, procedures, severe, sick, sick person, students, surgeons, surgeries, surgery, survivor, ulcerative, ulcerative colitis, ulcers 19 Comments

When I was diagnosed, it wasn’t clear right away whether I had ulcerative colitis or Crohn’s disease. My disease was so progressive, and I was so sick, that each treatment was like grabbing straws in the hopes that something worked. I prayed to avoid surgery, I prayed to survive.

On the cusp of colon cancer and failing treatment, there was no way to avoid the inevitable. Surgery was the only choice. Well, surgery or quite possibly death. But I was 17 years old and the idea of losing my colon was terrifying. I remember the team of doctors-specialists, surgeons, students, all filing into my hospital room to deliver the news.

I remember my surgeon drawing a picture with a black pen on white paper. “We will cut here, remove this, and make an opening there, create an ostomy out of that…” each scribble demonstrating what he planned to do to me. It was all so abstract and unreal. It was like I was that paper person and it was as simple as drawing a cut across my tummy and pulling my intestine through my abdomen. JUST. LIKE. THAT. But I am flesh and blood and not a series of sketches on paper.

All I knew is that my life would forever be changed. Illness changes everything, losing my colon was collateral damage that this disease was leaving in its path. It was killing me from the inside, and if my colon wasn’t removed, then there was not much hope for a future. I prayed to just survive.

Go ahead then, take it out.

Surgery was scheduled, my Living Will intentions were made, I signed the papers and cried when they wheeled me away from my parents, holding my mom’s hand until I couldn’t anymore. Until I had to let go… It’s so hard to describe that fear of the unknown. I was sick. Not just sick but deathly ill. If this was my chance at survival, would I really survive? I prayed to live through surgery. I prayed to survive.

I survived the surgery, but I was left with a body that was so unrecognizable to me. Cuts across my abdomen, part of my intestine on the outside, an abnormal anatomy that was hard to comprehend when I was just a teenager. Actually, no matter how old you are, this is something so incomprehensible. Who goes to the bathroom in a bag? Who lives this way? How do I live my life going forward? I am just a kid. Why me? The litany of unending questions each one more palpable than the last. I prayed to survive. Now how do I do that?

That was 10 years and more than a dozen surgeries ago. That was 10 years and more than 100 hospital stays ago. That was 10 years and 1,000 procedures ago. That was 10 years and a lifetime ago. I will never forget that scared young girl. Now, 10 years later, although I am still in a battle with this disease that has finally been diagnosed as Crohn’s disease, I am stronger and I am a survivor. Today, I live with a permanent ileostomy and a permanent positive attitude. I survived. 10 years. I survived.

This is the surgeon who performed my first surgery

Ostomy Awareness Day 2016

October 1, 2016 By Nadia Fuad in Health Update Tags: awareness, beginner, bowel, bowels, cd, character, colitis, colostomy, crochet, crochet tutorial, crocheted, crocheting, crohn's, disease, fashion, fashion blogger, fight, girl, health, healthy, ibd, ibd awareness, ibd awareness day, ileostomy, inflammatory bowel disease, like a girl, osto, ostomate, ostomies, ostomy, ostomy awareness day, stoma, surgery, uc, ulcerative, urostomy, video tutorial, yarnie, yarnutopia 15 Comments

Annually, the first Saturday in October marks a day of recognition for ostomates. Ostomy Awareness Day is a day to shed more light on this life saving surgery. I take this opportunity to try and educate others about this surgery which saved my life.

What is an ostomy?

An ostomy is a surgically created opening in the intestine. The intestine is then brought through the abdominal wall to form a stoma through which waste passes into an appliance on the outside of the abdomen.

No one really knows the exact number of ostomates worldwide – estimates range from 450,000-1 million people. Many, like myself are surviving and thriving because of this life saving surgery. We would not be here without this. Ostomy surgery is often the last resort after exhausting and failing every other treatment option.

Why do people get ostomy surgery?

Cancers, inflammatory bowel disease, spina bifida, perforations, trauma, accidents, gunshots, neurogenic issues, diverticulitis and several other reasons can lead to why a patient is LIVING with an ostomy. Some patients have temporary ostomies while others, like myself, live life with a permanent ileostomy.

What are some myths about ostomies?

Unless people are educated about this, the stigma exists for misconceptions and misunderstanding to form. Common myths about ostomates are:

We smell
We always have to wear baggy clothes to hide our appliance
We can’t participate in sports or be physically active
An ostomy is a death sentence
Only elderly people have ostomies

Speaking for myself, as someone who had her first ostomy surgery at 17 years old, I am LIVING proof that these are myths. My Crohn’s disease was so progressive as a teenager that I would not have survived without having my colon removed and been given an ileostomy. On the cusp of colon cancer, my alternative was to live with this surgery and try to get my life back from the grip of a horrible disease. Things are not always easy and my road to acceptance has been rough at times, but rest assured that I do not smell. I love fashion and wear a wide variety of clothing. I was never athletic, but that isn’t because I have an ostomy, it’s because I am a klutz. Ostomy surgery saved me from an absolute death sentence. ANYONE, no matter what age, can have ostomy surgery.

I hope this helps provide some information about something that I, and so many others, live with each and every day. Thank you for the opportunity to educate and advocate on this Ostomy Awareness Day 2016 and for taking the time to read this blog and help the awareness grow!!

Without this surgery I would not be here to share my love for crochet with the world.

♥ Nadia

To read my personal health blogs follow these links:
Keep your Face to the Sunshine
A Promise of Hope

Health Update: A Promise of Hope

March 23, 2016 By Nadia Fuad in Health Update Tags: body, body image, bowels, chrones, chronic, chrons, crochet, crocheted, crocheting, crohn, crohn's, crohn's disease, disease, dysmorphia, fight, fighting, flaws, granny, granny square, granny squares, healthc, hope, ibd, ileostomy, illness, image, imperfections, inflammatory bowel disease, ostomy, person, sickness, surgery, trial and error, uc, ulcerative colitis, yarnutopia 110 Comments

This blog is the first part of my birthday gift to you, Nate.

As I start this blog I have to admit that, surprisingly, it is one of the hardest pieces I am writing for a couple of reasons. I have backspaced and deleted enough to the point where, if I were writing in the 1970s, my trashcan would be over flowing with crumpled paper that I keep pulling out of my ancient typewriter. Good thing it is 2016, and several trees are being saved from my inability to focus on how I want to put these thoughts into words.

Gravity

Part of the reason I am having trouble with this blog is because it was the object behind a bit of a disagreement between Nate and me. It was nothing major, just a misunderstanding. I can be feisty and stubborn, but being ill has taught me enough about what is important and what matters, so arguments and fights with anyone are few and far between. So, no worries please.

Secondly, I am hesitant on writing this because, usually, when things go up, they must come down, and that has been my typical health pattern for nearly nine years. I have learned that a lot of things are temporary. As I continue to write about some of the positive things that have been happening with my health, in the back of my mind there is a whisper reminding me of Newton’s Universal Law of Gravity. That pesky law keeps me from getting too comfortable with the status quo. But tonight I am going to ignore that stinking voice so I can write in peace.

Barbie Butt

I had surgery on December 9th, 2015 following a very scary episode of sepsis which landed me in the critical care unit for nearly a week. You can read my last health update here. The surgery was scheduled in hopes to offer me a better chance at not repeating history of sepsis in that area as the risk was so high. All of my physicians concurred that I may not be so lucky ‘next time,’ so I had a removal of my rectal/anal cuff and the surgeons closed my bottom. Essentially I was given what they call a ‘Barbie Butt.’ You can laugh. It’s OK. It’s the truth, and God help us all, we NEED humor. I am 25-years-old and have managed to survive some of the most painfully undignified, frightening, and major health hurdles to end up with this Barbie Butt. Believe me, laughter has helped me so much it’s not even funny…or it is…but it’s not. (You know what I mean!) Without humor I wouldn’t have survived; I promise you that. Having this surgery is better than the alternative. So, I laugh in the face of this *bleep* disease that keeps coming at me. “Go ahead Crohn’s disease, Take my a-hole. I didn’t need it anyway!”

Following surgery, I ended up back in the hospital with another abscess and sepsis scare, but it was minor and with a strong dose of antibiotics, I recovered and was home in time for the holidays. That was crucial because I was about to launch the 365 Days of Granny Squares blog in the New Year. Here I was, sitting in the hospital, trying to figure out if I could orchestrate this project from my hospital bed so it would be ready to go by January 1st. I got lucky. I got to come home. 365 Days of Granny Squares went off without a hitch. Today, it has officially been an entire three months that I have not been hospitalized, and to be honest, that is a near record. The granny squares are helping me keep count! Haha!

The struggle is real

Although it hasn’t been easy, and finding an effective treatment plan for my Crohn’s disease has been like playing roulette, things are beginning to look up.

I struggled for the entire month of January trying to recover my strength. By February, I felt stronger but didn’t feel fully better. I started a new drug treatment six weeks ago that offers a lot of promise. Other than being bothered by a few side effects and minor setbacks, I am hopeful as I have seen some mild improvements *knock on wood*. I have tried so many new drugs and treatments, diets and health regimens, that I started to lose hope after failing so many times, but this time I have to hold on to hope. This time is different. It’s different because there is someone else in my picture besides myself, my friends, and my family. It’s Nate.

Nate

He’s my person

Remember that argument I mentioned we had earlier? Yeah, well, it was because I put him on the spot barraging him with questions about all this health stuff the other night with that not-so-pleasant side of my personality that demands answers about handling life with a sick person. I was probably having a tiny pity-party. There were tears, but I’m over it. Sometimes, in those fleeting, not-so-pretty moments, I feel unlovable, ugly, and scarred from a dozen surgeries and having an ostomy, all THIS worry comes out and gets overwhelming. It is overwhelming living with a terrible disease, so walking into this life by choice and choosing to love someone with these circumstances on their plate is HUGE. It’s a risk, and he did it. He did it for me. He told me I am worth the risk. Me! *insert a million feels here*

Flaws

Presently, I am surrounded by several skeins of yarn and 600 tiny square crocheted pixels for a project I am making for Nate’s birthday gift.

I’m not thinking about the ugly side of this disease but about how lucky I am to have that love. For the first time in three months since surgery, I don’t just feel good, but I feel amazing! It has nothing to do with medication, doctors, good lab results, or clinic visits. It has to do with someone who Googled Crohn’s disease so many months ago and spent time reading all about it trying to learn what he could, so he could better understand this disease and what he would be facing with me. I feel amazing because Nate says I “fight like a champ” and I am the strongest person he knows, and guess what? I believe him. I feel amazing because, when he looks at me, he doesn’t see all those scars or my ostomy, and that I feel “broken.” He just sees me. Nadia. The girl I always wanted to be before my body was attacked by this disease.

Fighting like a champ (Surgery 2015)

The future’s so bright, I gotta wear shades

There are a lot of things in life that aren’t fair. Nothing is remotely pretty when fighting against sickness. Chronic illness has taught me how unpredictable life can be. I wish I had that magic crystal ball to see the future, so I could know what is coming, but I don’t. I can recite to you my dream of what I would want to see, if the universe lined up just right to grant me that future. It’s a beautiful private dream. But it is exactly that – just a dream.

One thing I have learned is that I can’t control any of this disease, and the universe has a plan of its own. However, despite all these trials, I have been given this perfectly imperfect life that looks nothing like a perfect dream, and that is OK. Illness was the reason I started to crochet. That led me to create YARNutopia and introduced me to this wonderful crochet community. It has brought me lifelong friendships. It taught me the value of what is truly important, and finally, it navigated my life to cross paths with an extraordinary man who is willing to face that frightening, unknown future by my side. He gave me a pinky promise. That is a promise of HOPE. There are no words that exist to thank someone for a gift that extraordinary. Maybe these undeleted, uncrumpled words can help.