It’s been quite a while since I have last written an update both regarding my health and also Nasir’s diagnosis of autism. As far as my health goes, I feel I’m in the best place I have been in years. I have occasional setbacks, but over-all I have been feeling very good. I’ve been following up with doctors, continuing my biologic medication, and trying to practice a healthier lifestyle. I have been going to the fitness center several days a week. The gym is two-fold. One, for my physical and mental health, and secondly for Nasir. He is socializing with his peers more and more, and the gym’s childcare services provide an opportunity for him to do just that.
Where we started
Since I last blogged about this, we were in the middle of a whirlwind of overwhelming hits coming at us from every direction. Nas wasn’t meeting his appropriate age mile markers. I was battling my own health issues with my Crohn’s disease and mental health, the most difficult being post-partum depression and anxiety. You can read more here.
Soon after the doctors told us Nasir was on the Autism Spectrum, we were thrust into a new normal of therapies of all kinds. Speech, behavioral, occupational, and more. Nasir was nearly two years old and other than making some babble sounds, he didn’t say actual words, mimic our sounds, answer or respond to his name, he wouldn’t make eye contact often, he played independently from other children (other kids didn’t interest him much), he obsessively watched or paid attention to only certain things like specific TV shows that he watched over and over. We would discount or rationalize them, or chalk it up to other things – “maybe it’s his hearing” or “he was born a little early, he’s just a little delayed.”
What came next
Getting the diagnosis of ASD was bittersweet for our family. It’s one of the most overwhelming things to process, but we also have a solid reason for the why’s we were experiencing. We could finally move forward with all the wonderful resources our community has to offer.
Where we are now
Nasir is in therapy nearly every day. He is now talking non-stop. He has lots to talk about and share. He has big opinions and now that he has discovered his voice, he is eager to discover new words, things and experiences. He loves adventure, to play, and to build. He swims and loves the park. He has friends and learns a lot from parallel play. He recently started dancing and his love of music has always been strong. Magna-tiles have opened up his imagination, and he is a master at building castles. He sings, counts, says the alphabet, and identifies so many objects we see throughout the day. He loves his family. Mama and Daddy are his favorite people followed by his grandparents, all his aunties, uncles, cousins and his amazing therapists. He loves reading books, and presently, The Mickey Mouse Clubhouse is his favorite TV show. (We shout “OH TOODLES” a dozen times a day!)
We have come SO FAR in a just under a year. The therapies have provided Nate and I small windows in our day to have a break. Despite Nasir’s achievements, he is still demonstrating behavior that do not allow us many moments for breaks. He’s still a wild toddler, of course, but he also never sits still, his attention span is very short. We are having less meltdowns, but they still occur daily. My entire life is devoted to this sweet boy and facing all the challenges that come our way.
Moving ahead
When I do get a chance, I’m trying to get back into my crochet. I feel that spark coming back. I feel several sparks returning. I’m beginning to feel more like myself. Therapy has helped – my own therapy. It’s been life-changing. Little by little, I have been able to piece myself back together. I’m stronger than I have been in a long time. I can do hard things, and I’m doing them every day. If Nas is doing hard things, then I need to continue to set an example and do the same. We continue to take baby steps toward doing more crochet projects and hopefully soon, things will be back into full-swing.
I am currently working on one crochet project per month, and I have a goal of doing 3 to 4 projects per month like I used to do. At the time of creating this blog post, I am anticipating planning out our Halloween costumes for the family this year. You know we have to go all out like every year! Can’t wait to share what we have up our sleeve in 2022!
Like most of America, and the world, I am staying home as ordered by our state officials. It is such an unusual and unprecedented time and everyday things are changing. Our situation is so fluid meaning what we hear on the news in the morning, can completely change by the evening. I don’t know about many of you, but this unsettled world has me feeling so anxious and nervous. It also puts me on high alert because, as a person with a severely compromised immune system and a long history of health issues including asthma, I am fearful of everything I am learning about this illness.
Presently, I take immuno-suppressant medications that keeps my chronic disease under control, but severely taxes my system leaving me little to fight off infection or illness. I fall into that segment of society who are at high-risk of danger if I come into contact with anything going around.
Plans Change
I have not left my house for over 3 weeks. I don’t know if you recall through my recent posts and videos, but Nate and I had a trip to Colorado planned for our second anniversary and Nate’s golden birthday. (He turned 30 on March 30th) We were going in early March to Denver. Everything was booked, ski-hill passes were purchased, airfare and lodging reserved and paid for, sightseeing plans and a special anniversary/dinner was in the works. Nasir was going to Grammy and Grampy’s house for the week. We were so excited.
As more and more news broke out, it became apparent that we would have to cancel our vacation. I called my doctors and they advised me NOT to travel. They had insisted that in my condition and with little to no immune system to fight, going into an airport or on a plane was too dangerous at this time. Was I sad and disheartened to cancel all our plans? Absolutely. However, I trust my doctor, and if my doctor issues a grave warning like she did, there is no way I would go against her recommendations. I have been through too much in my life not to heed her warnings.
Everything Is Canceled
So, we, like many of you, decided to retract and cancel all our plans and reservations and stay home. Glued to the TV and internet we watched everything unfold in real-time. Rapidly changing, constantly fluid and more frightening by the moment, we stayed in and were gripped by what was happening in the world and right here at home. I needed to walk away from the screens and try to salvage what I could of our “vacation” by re-inventing a plan to enjoy our anniversary and Nate’s birthday. And we did. We kept Nasir home and the three of us did a “stay-cation” in our living room. We binged Netflix shows, took a few countryside drives, walked a trail or two in isolated places, we cooked a nice dinner on our two celebrations and WE STAYED INDOORS. My extent of “leaving the house” is going into my backyard.
Our Options
Nate is fortunate to have several weeks of vacation and PTO (Paid time off) that he is using up from his “essential” job. He works in a plant that has numerous employees, and from all indications, we felt that his going to work at this time was not wise because of community spread and he was able to use up his vacation to stay home so far. On the advice of my doctors, they suggest he take time off and stay home indefinitely, as to not bring anything home with him that puts me or Nas at risk.
It has been extremely stressful to work through the decisions of him returning to work versus staying home if he is able. Like many people, this serious crisis is forcing our hand to make hard choices to protect our family and none of the choices are easy. He stays home, we cut off our main income for the indefinite future. If he goes to work, then he risks exposure and bringing “it” home in a household that deals with an individual with little to no immune system to fight off any of this. I can’t tell you how scared or anxious I have been!!! I know I am not alone in saying this. ALL of us are scared.
We will find a way
As we navigate through the uncertainties and worries of this ever changing situation and confide in our doctors and families, we have been able to come up with Plan A, Plan B, and Plan C. Each one comes with its own set of concerns and heartaches. Do we take no pay? Can we survive on just my income? (I have exhausted myself looking into options –FFCRA-the Families First Act or Paycheck Protection-none of which apply to us) Do we send Nate to work? Should Nas and I stay with my parents and be apart from Nate for an indefinite duration?
We, are faced with life-altering decisions while we press ahead into the unknown. At least we have what we need. At least we can manage through each plan despite the difficulties of each choice. At least we have support. I remind myself all the time of the blessings I have before me and focus upon those. Many are not so fortunate, and it hits me over and over to imagine the unimaginable. We will work this out. No matter what sacrifice we make, it is small in comparison to so many others. No matter what, we all have had to work through so many rough spots of this situation and it’s not easy.
Moving forward
As we move forward, sometimes slowly, sometimes at a mad pace, the least I can do to keep myself occupied is what I do best. Crochet. So for the next weeks, months, whatever it takes, I will continue to bring you what I can of my craft. I will show up. Every day. I will bring some new projects, new patterns, light, laughter and a distraction from the craziness that is swirling around us. So, join me as we keep moving forward. Bring your hooks and your yarn, and for a few minutes a day try to focus on other things that distract us from our worries, and relax with our craft. Because in a time when so much is out of control, one thing we can be in control of us the choice to take a few moments to do something we love.
“It is how we embrace the uncertainties in our lives that leads to the great transformation of our souls.”
When we reach the end of this, and we will, I hope we can all move forward with more love, patience, and understanding of one another. The lessons we learn will be immense.
I hope you all stay healthy…
~Nadia
P.S. A huge thank you goes out to everyone in the world who are on the front lines of this insanity. ALL the helpers. ALL the essential workers. ALL the people who risk their lives so we can be home. Our gratitude knows no limit. And for the families this may reach, I hope and pray that all of you are well and safe. I am sending every bit of goodness your way.
I don’t know who needs to hear this as I hope no one is breaking these rules, but if you are one who was told to stay home, please do. Follow the guidelines of what has been mandated so that those who are unable to be home with their families can stay as safe as possible during this time.
Sending you lots of love.
Share with us how you are getting through this difficult time.
In observance of Crohn’s and Colitis Awareness Week (December 1-7), I wanted to share a little bit about my story to help anyone who is unsure how devastating these diseases can be, and to help everyone learn more so they might better understand their impact on a person who lives with this every. single. day.
I have had more than a dozen major surgeries and thousands of medical procedures that require me to be biopsied, explored, cut, stitched, stapled, and pieced back together. This disease has affected every part of my body. I have spent years of my life hospitalized trying to fight this disease. I have lost my large intestine, parts of my small intestine, my rectum, my anus, and a few other parts of my anatomy, forcing me to live with a permanent ileostomy. What is an ostomy you might ask? An ostomy is when part of the intestine is pulled through the abdomen wall allowing waste to empy into an ostomy appliance or bag on the outside of the body.
Although my ostomy saved my life, it also destroyed parts of my self esteem, it caused an enormous amount of anxiety, and oftentimes, depression. As much as I’d rather focus on the positives, one bad day, week, or month can pull you right back into the abyss of some pretty heavy feelings. Thankfully, there are now more good days than bad and without my ostomy, I would not be here as a daughter, a sister, a wife, a mother, a niece, a cousin, an auntie, a crochet teacher, a friend and an advocate.
I remember the days when I wanted to just give up. When I sobbed and hurt; when I begged for Allah to have mercy on me and let me just find relief. I remember the days after surgery when I had to relearn to sit-up, to walk, go to the bathroom in a new way, to take care of all my wounds, to treat all the infections, to fight my way through sepsis, infusions, experimental treatments, failed medications, hearing the good news and the bad, the numerous doctors and labs, the constant feelings of being scared, the bag leaks and the humiliation of being covered in poop in
a public place, and ALL. THAT. PAIN.
This disease has not been kind to me, nor has it been kind to the 5 million people around the world who suffer every day from Crohn’s disease or ulcerative colitis. Every year, I pray and fight and campaign and rally for a cure. Each year passes and although it feels closer, it still feels so far away.
This illness is just part of my story. Even if it has dominated my life for more than ten years, it isn’t all of it. There is so much more to my life than this miserable sickness, and thankfully I am still here to live the best parts of my story.
Every step this crooked, crazy journey has taken me on, landed me right where I am today. I would have never had the opportunity to know this kind of joy or feel this kind of love, if this disease had defeated me.
There are millions of people at the mercy of these illnesses. Although my fight continues, I consider myself lucky. Many are not as lucky as me. I am lucky not because of the treacherous medical path this has taken me on, but lucky because it has brought me here.
Please take a moment to share my story. To spread the word about these life altering diseases. Crohn’s disease and ulcerative colitis are debilitating to many who live with these diseases. This deserves more than a week of awareness. We deserve to find a permanent cure. Please help us find one. I have so much to live for. I want to always be here to watch this little boy grow..
As some of you may have noticed, I have been somewhat MIA on my social media and on my blog for a little bit. I have been posting and have been a little active, just not as much as I usually am. There’s a reason for that.
Last week, I ended up in the hospital. I was having a lot of issues with my body and baby, so I went into the Emergency Room. The doctors here in La Crosse, WI did not feel confident, and the scope of my issues were outside of the range they felt comfortable dealing with. They felt things were emergent to either med-flight or rush me to Mayo Hospital in Rochester, Minnesota.
It was decided that was going to be rushed by ambulance, but Nate could not accompany me on the ride. He came behind and my mom met us up at Mayo Hospital. I was in the hospital for nearly a week with several complications making it impossible for me to manage at home.
It was decided that upon release from the hospital, I could return home short term while a social worker from the hospital would work on a short term relocation plan for me. For these last few weeks before delivery, I will be staying in Rochester near the hospital in an extended stay apartment. This way, I will be close by the hospital in case anything emergent happens again.
What is going on?
In the recent blog where I shared my pregnancy photos, I mentioned that the doctors have taken me off of all my medications that help to keep my Crohn’s disease under control while I work towards remission. Now, off of the medication, my body has started to get weaker. I ended up with an infection and the infection put my body into a full-on flare.
Since I don’t have a large intestine, my small intestine has to learn the job of what its old companion had done. I have to draw my nourishment, vitamins, minerals, fluids, and much more from my small intestine similarly to what the body does with the large intestine. Not only do I rely on that intake, that same intake is what is helping to keep baby healthy. When I got sick last week, the function of the small intestine failed me, and my body was having a difficult time absorbing ANYTHING. This made it difficult to keep food down, my body was severely dehydrated, and some of my blood test numbers were dropping making it difficult to keep my nourishment markers where they needed to be.
Because I am pregnant, normal options for treatment aren’t always viable because they can affect the baby. There were so many limitations that the doctors could treat me with. It took some time and patience, but we were able to find a way for me to gain some control over my body without causing more stress to me or baby. At least, for now, it was enough to go home and prepare for this upcoming relocation.
What will this mean for YARNutopia?
I am home for a few days. Soon, I will transition to an apartment closer to the hospital in Minnesota. I will stay there temporarily until our baby is born. Nate will be with me on the weekends, and my mom will be coming to stay with me during the weekdays, as I can’t be alone. All my care will continue through Mayo Clinic in Rochester.
(Pictured above is a photo of my mom and me in the hospital last week)
(Pictured above is me, feeling better)
Because of this transition, I won’t be able to be as active or as present on my social media sites. I won’t be checking out completely though! No way! I love my social media! I will, however, be taking a small step back to get things under control with my health and prepare for delivery. There are LOTS of appointments, checkups, and tests to be done in these last few weeks! But don’t worry! I will do what I can, when I can! So, please keep checking the Facebook page, click on the links I share, share photos of your work. I’ll be crocheting to pass some time, and I hope to keep on keeping on. I will be sure to check in as often as I can!!
I will also try to update you as much as possible. Until baby arrives, the most I will be doing is trying to keep as healthy as I can so he can be inside growing and developing. We need him to be the strongest he can be! We are almost to his due date, so we are hoping for a not so bumpy ride to get there! Haha!
In the next few weeks, I am still hopeful to post some new blogs, a few new posts, and whatever I can do, but in the meantime, I will pull from the archives some great classic patterns, some oldies but goodies, and I will share work from my fellow designers! And once baby is here and I am recovered, I will be back better and stronger than ever!
Disclaimer: This blog contains sensitive pregnancy photos. I ask everyone to be respectful and any negative comments will be deleted. It took a lot for me to be vulnerable to share these images. With my health history, I wanted to be as transparent and open as possible with this miraculous pregnancy.
Many of you already have been following my journey and know that my health history has been plagued with illness, numerous surgeries, and plenty of setbacks. I had my colon removed in 2008 because my Crohn’s disease was so progressive. Doctors, worried about the dangerous potential of colon cancer and with fast deterioration of my colon, removed it to save my life. That journey was wrought with so many setbacks and ongoing severe illness. Chemotherapy, biologic treatments, thousands of procedures, multiple ostomies, hospitalizations, and repeated surgery had severely impacted the quality of life I was living in my late teens into my 20s. Most of my dreams were put on hold just to survive.
The one dream I held onto and hoped for was to one day be a mother. Doctors could never give a definitive answer as to whether or not pregnancy could even be possible. It was always a “wait and see” possibility. Without my large intestine or parts of my small intestine, even carrying a baby to term was a huge risk. And, it has been. This miraculous pregnancy has been filled with many issues, illness related problems, and so much worry. Yet, this sweet little boy growing inside me is a fighter. Just like me.
That is why, as we came closer to my due date, I dreamed of having pregnancy photos taken to mark this extraordinary time in our lives.
My colo-rectal surgeon told me last week, despite all the complications, try to enjoy this. “Enjoy being pregnant, Nadia.” She said, “Time goes so fast, we forget these moments. Try to remember how exciting it is to feel him moving…” And it is! This is so true! I have to appreciate everything I am going through to bring him here, and I love him so much that I don’t care how much I have to endure. This is temporary and so worth it.
Next week, I stop the last of my medications needed to keep my disease in remission, so our baby has the best chance and can be his strongest at birth. That part is very unsettling because I don’t know what my body will do without those medications. I am hoping that the last dose will sustain me through the final weeks until delivery and beyond. With that in mind, I decided now was the best time to do these photos. While I felt as good as I can expect to feel, I wanted to capture the power of this moment and the profound feelings of this health and pregnancy journey. I channeled my inner “life-giving goddess” for these powerful images!
I want to thank my mom and dad for their help in bringing my vision to life through these photos, and a huge thank you to Nate for being the most amazing husband and best friend on this journey. I couldn’t have done this without him..obviously..haha!!
“Life reveals her beauty one precious miracle at a time.” ~Flavia
I am typically pretty upbeat and positive by nature. I have had to overcome a lot in the past decade, and I have spent some of that time feeling situational depression due to battling illness, surgery, dealing with body issues from having so many scars and a permanent ileostomy. When I found out I was able to get pregnant, and subsequently carry this baby, I was over the moon! Depression wasn’t even on my radar at that time.
I Knew It Wasn’t Going To Be Easy
I am extremely high risk. I have a team of doctors and specialists across three hospitals that will be involved in bringing this baby into the world safely. Of course, I am a bit nervous, but I also have great faith and trust in this team to do everything to help bring this baby boy into the world, keeping us both healthy and happy.
Here’s where I struggle. I am supposed to be happy. I AM happy. Don’t get me wrong. I’m happy to feel baby move and happy to know I will hold him in just a few short months. However, what is happening to my body is bringing me so low. I am just not feeling overall happy, and I didn’t expect that.
A Complex Medical History
Without delving too deep into the graphic details, I’ve had 14 surgeries which have left my entire abdomen full of scars. I have numerous scars running up and down, diagonally, and across my torso. Drain scars, former ostomy scars- just scars, scars, scars! Following one surgery, I had a serious infection so my abdomen had to be re-opened, and I was put on a wound vac to help heal by secondary intention. That process left my tummy full of puckered and thick scar tissue. All this scar tissue causes adhesions. As my abdomen stretches, the scar tissue is stretching and tearing both on the surface and internally. It has been challenging to deal with. This, along with changes in my ostomy with my intestine prolapsing outside my body, has left me feeling depressed over all these reminders that my body isn’t quite the same as others.
Pre-Partum Depression
This pre-partum situational depression has hit me hard. I am struggling with my body and disease and with my hormones running amok. I have found myself in tears quite a bit lately. I am not writing to complain, NO, but to confront what is happening to me and to share this with others who may struggle with these same feelings during pregnancy or at any time. I know that this is supposed to be the most blessed and happy time of my life, so why am I feeling so blue? I don’t have the answer.
Crochet IS Therapy
During this time, my comfort and refuge is found in my craft. I am so grateful for a loving and supportive husband and the support of a fantastic family, but when I am alone, I find solace in the stitches and the repetitive nature of crochet to help distract and focus my mind on something other than these feelings and the pain from my scars.
Lately, I have been working on so many crochet projects for not only my little guy, but also for my sister-in-law who had a baby girl in January. My niece is the perfect model! These projects, alongside my work here at YARNutopia, has given me a deepened purpose, and these goals have helped me focus on more than the issues I am dealing with.
Self-Care
I know I’m not alone. I know that this is only temporary. I know this is a very small price to pay for bringing my baby into the world. I know I have support and love of an amazing husband, family, and community. I know all these things. I also know it is ok to feel. It is ok to be sad. It is ok to hurt. It is ok to ask for help. It is ok.
After spending a little time yesterday on self-care – I bought myself some springtime flowers to brighten my home, I did some retail therapy and bought myself a few feel-good things, I had my nails done, I took a long walk in the sunshine, a short drive and played my favorite music, and I talked for hours with my mom-I am happy to say that I feel a little better. Today has started off on a good foot and writing this has helped. Also, it has helped to be working on some crochet projects, and I went to brunch with Nate. Each day may present a challenge, but I am thankful be able to face each one in strength and resolve and overcome those challenges!
Share with us:
Please share your stories of pre-partum or post-partum depression or your struggles with feeling out of control. Share your stories of how crochet has brought you comfort during a time of need.
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 28th 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!
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
Recently, one of our followers reached out asking for some assistance for an important cause. She is a mental health advocate and public speaker. She asked me for help to make small crocheted turtles.
MHATs or Mental Health Awareness Turtles, will be distributed to patients who are dealing with traumatic experiences that led to their ongoing struggles with mental health. This individual is working to help others who, like herself, have endured horrific experiences and SURVIVED.
In the aftermath, they are now left with lifelong battles. We can HELP! These little turtles have provided big benefits to patients dealing with these traumas. The goal of the MHATs is to provide comfort and start conversations. A reminder for people to come out of their “shells” and discuss mental health openly without fear of stigma.
Patients who are living with ACE or Adverse Childhood Experiences, Agoraphobia, cPTSD or complex Post Traumatic Stress Disorder, Severe Dissociative Disorders and many others both inpatient and out-patient will benefit from this project. She needs to meet her goal of 100 turtles by October 1st,2018. All the turtles we make and send to her will be 100% donated to this cause and help patients. If anyone would like to help, please read and follow the pattern below.
THIS IS NOT MY PATTERN AND THERE IS NO VIDEO TUTORIAL. I have provided photos of my own turtle which I made using this pattern to show you the end result. You can find the address to ship your turtles to at the bottom of this page.
I have made it big and bold so you cannot miss it! DON’T forget the deadline is OCTOBER 1st, 2018. She will be speaking at an event on OCTOBER 11th, 2018 and will need to have the turtles well in advance. MHATs Pattern is property of Erika Reva Memering.
Address to send your turtles to:
Erika Reva Memering
MHATs Project
2956 Allen Street
Lake Station, IN 46405
Pattern:
Body and Head: You can use any colors you want. Scraps of yarn even work, since this doesn’t take too much yarn to make this project.
Color I used photographed above: Red Heart Super Saver Freshmint
Shell: You can use any color you want. Scraps of yarn even work, since this doesn’t take too much yarn to make this project.
Color I used photographed above: Red Heart Super Saver Stripes Polo Stripe
Special stitches:
Ch(s): chain(s)
YO: Yarn Over
St(s): Stitch(es)
Sl st: slip stitch
SK: Skip
SC: Single Crochet
HDC: Half Double Crochet
DC: Double Crochet
BLO: Back Loop Only
RS: Right Side
WS: Wrong Side
Body:
Using Your Main Color, work in BLO and in continuous rounds.
Put Stitch Marker at the beginning of each round to mark your rounds if needed.
Ch 2 Rnd 1: 7SC in 2nd CH from hook. (7) Rnd 2: 2 SC in each st around. (14) Rnd 3: [2 SC in next st, SC in next st] 7 times. (21) Rnd 4: [2 SC in next st, SC in next 2 sts] 7 times. (28) Rnd 5: *Ch 7, Sl st in 2nd ch from hook, SC in next 3 Chs, HDC in next ch, DC in next ch, Sl st into next st on body and next 6 sts, repeat from * around. (4 legs made)
Fasten off weave in ends.
Head:
Using Your Main Color, work in BLO and in continuous rounds.
Put Stitch Marker at the beginning of each round to mark your rounds if needed.
Ch 2 Rnd 1: 5 SC in 2nd Ch from hook. (5) Rnd 2: 2 SC in each st around. (10) Rnd 3: [2 SC in next st, SC in next st] 5 times. (15) Rnds 4-5: SC in each st around. (15)
Embroider eyes on turtle (optional) Rnd 6: [SC2TOG, SC in next st] 5 times. (10)
Stuff the head Rnd 7: [SC2TOG] 5 times. (5)
Stuff head a little more if needed.
Fasten off with long tail for sewing.
Sew to body between 2 legs.
Shell:
Using Your Accent Color, work in BLO and in continuous rounds.
Put Stitch Marker at the beginning of each round to mark your rounds if needed.
Ch 2 Rnd 1: 7 SC in 2nd CH from hook. (7) Rnd 2: 2 SC in each st around. (14) Rnd 3: [2 SC in next st, SC in next st] 7 times. (21) Rnd 4: [2 SC in next st, SC in next 2 sts] 7 times. (28) Rnds 5-7: SC in each st around. (28)
Fasten off with long tail for sewing.
Be sure to have the Right Side facing out and sew shell to the body. Once you have it 3/4 of the way sewn closed, be sure to stuff the shell, but do not stuff too firmly.
Weave in all ends.
Enjoy!
Please send your finished turtles to:
Erika Reva Memering
MHATs Project
2956 Allen Street
Lake Station, IN 46405
This post contains affiliate links, which I may be compensated for when you make a purchase. That means if you click on any link and buy from the linked websites, I will receive a small percentage of the value of your order. The amount you pay is not changed. Thank you for all your support in clicking the links in my blog!! You all are so amazing!! ~Nadia
If I could crochet a colon for myself and anyone else who has lost their intestines due to Crohn’s disease or ulcerative colitis, I would. If only it was that easy. I would stitch until my fingers fell off!! Unfortunately, I would have to crochet for millions of people who sadly have had total proctocolectomy surgery due to the devastation of inflammatory bowel disease. Today, May 19th, is World IBD Day. It is a day to recognize the millions of people worldwide who suffer from these debilitating diseases.
I crocheted this colon (large intestine) as a symbol of loss. Crohn’s disease claimed my large intestine in 2008, only one week before my 18th birthday. On the very cusp of colon cancer, my disease was extremely progressive and surgery was my only option. The fight never ends because sadly, there is no cure. Ulcerative colitis and Crohn’s disease are the most common types of inflammatory bowel disease. Ulcerative colitis affects only the colon and rectum. Crohn’s disease can affect any part of the digestive tract from mouth to anus.
This colon represents each major surgery; each stitch stands for each procedure, x-ray, scan, or test that I have undergone. This may seem like an unusual analogy to represent an organ or diseases that most people rarely, if ever, think about. To me, this disease changed my entire life and those changes led me here, crocheting my very own colon, and using my voice and skills to advocate for others who don’t have a platform to help spread awareness. Many of whom are no longer with us. Our diseases may appear invisible, but we are not!
Silly, strange, serious, or an obnoxiously bold statement, however you view this piece I created, hopefully it will generate conversation for inflammatory bowel diseases. Not just on May 19th, World IBD Day, but every day of every year until we find a cure.
Please *share* this blog post and you may be surprised to find how many people YOU know are silently suffering. There is NO CURE. Help raise more awareness so that I never have to type those words again.
Yesterday, I had a follow up physical and doctor appointment after having a bit of a health scare last week where I ended up in the ER. After going through a number of tests and scans, it was determined that we will postpone any surgery for now, and I will undergo additional testing and possibly a HIDA scan, for newly discovered issues that are affecting my gall bladder and other organs. Other than that, things were looking pretty “Normal for Nadia” as my doctors like to say! I’ll take that!
During this appointment, I was telling my doctor about my recent engagement and how Nate proposed on our trip to Europe. She was so genuinely excited for us. She hugged me three times and was overjoyed because she has seen me through so much. She also asked about how the transition will be as I prepare to transfer some of my medical care to a new city. Although it is far down the line, I will need to find a new physician and leave her behind. That’s a very difficult thing for me to do. It began to hit me how many changes are about to take place not only in my health journey, but life and business as well! Oh Boy!
Support goes a long way
My entire life has been spent with my parents; it is no secret that my Mom is my best friend. Although I did spend a short time away from home attending university, illness/surgeries impeded my ability to continue. After 6 separate attempts at going back to college, I decided to postpone it indefinitely. Illness won that battle. (I am still winning the war) I may consider going back one day, but for now, it was the best decision.
During those struggling years, my parents encouraged me to start a small Etsy shop and website to showcase my crocheted items. It was also during those times that, while in the hospital, so many nurses, nursing assistants, and doctors asked for help learning how to crochet. I began showing them basic techniques and taught while I was in the hospital. Teaching crochet in that setting helped me SO much. It also gave me a great idea!
Planting the seeds to grow a dream
I will always be grateful to my mom for her insight to give me yarn and a hook so long ago. She pushed me to do something constructive during those long months when I was in isolation or just spending a month hospitalized for whatever health problem I was having that kept me there.
When you are isolated and feel alone, having a skill or hobby to pass the time becomes invaluable. It becomes a lifeline that keeps your mind occupied and stops it from wandering straight into depressing thoughts. Thankfully, I was able to take that time to hone my skills in crochet and develop my craft into such a blooming network and community. It helped to open a platform that I could teach others my craft. My dad helped me start a YouTube channel, and I could reach others with my video tutorials. Having that connection to others quite literally SAVED me. There, an idea born out of a desperate situation, became the seed to grow this dream.
Challenges ahead
Looking forward to next year (2018), I am excited to be getting married and starting my life with Nate. Out of respect for my Pakistani culture and my personal beliefs, I will not live with Nate before we get married. What has me feeling a bit anxious is how my life will be structured to continue YARNutopia from a distance. I will not only have a new marriage, new doctors, a new home, and a business to balance, but an entire change from everything I know. Moving even a few hours away from home hits me at times that is both exciting and scary. This weekend, while celebrating Mother’s Day, we sat down to discuss this.
Structure and Discipline
Presently, we try to film 2-3 videos a week. Prior to filming, my mom and I design several items that I create off camera. I perfect and refine the pattern and then proceed to head into the studio for filming. It is in the filming process that we decide what videos to keep, what projects will be popular, or what ends up on the cutting room floor. Sometimes only one video will make it to our channel. This process is lengthy and tedious. It requires many hours invested and a lot of trial and error. Our days are planned, structured, scheduled. We each execute our particular tasks and responsibilities. My mom handles a majority as she also takes care of our home on top of everyone in our family as well as running and managing our business.
Having the structure and discipline of working with parents who have built a photography/videography business from the ground up so many years ago has been priceless. I just hope when I move away into my own home and start my life with Nate, the lessons they taught me will carry over into our life. I have never had the opportunity to work outside the home and this will be a big challenge to maintain this work ethic on my own, which incidentally, I never have had to be alone. Nate’s career has him working 8-12 hours a day. That is another idea that will take some getting used to.
Nothing Can Stop Us
Recently, Nate and I have begun to search for our “build a dream” home. We have been scouring the listings for a house that can accommodate our must have list. We sat down and made a checklist of things we want in a forever home.
My top priority is a place for a craft room/studio (and a dishwasher, but that’s another story!) We have gone through several places that have potential. Let’s see if we are able to find a place where we can create our life and provide me with the ultimate craft room! (That will be a future blog post of its own).
My dad will set us up with an in-home studio, and his plan will be to travel and film at our home. My mom and I plan to design, create, and work remotely via Skype. So many fun and exciting changes to come in the next 300 days as we plan out this move! As much as I look forward to all these changes, leaving my old life behind and starting over feels a bit daunting and overwhelming at times. I’m just eternally grateful for the support of a wonderful man, my parents, and all of YOU, who will continue to accommodate all these changes in order to see YARNutopia through this growth and transition.
Oh song lyrics, you give me the feels!
When I look back and reflect over the past nearly nine years of health challenges and life detours, I never pictured this being the way my life would turn out. I honestly wasn’t sure I would ever meet anyone willing to accept not only the voluminous health issues I came with, but also accept that I would need to manage a job that would fit my abilities and challenges. I could not ask for more in anyone and somehow through God, or destiny, it led me down this path. There is a song lyric that says, “This much I know is true, that God blessed the broken road, that led me straight to you.” No words could ever be truer to describe how I arrived to this place in my life. At times when I faced another health challenge, I always asked “Why!??” maybe this was always the answer.
~Nadia
“What is meant to be will always find a way” ~Trisha Yearwood
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.
As I prepare for yet another surgery, I wanted to reach out to everyone with an update on my current health situation, as well as give a background on my journey through illness thus far. Repeatedly challenged by sickness, I am often left to navigate my way through life around numerous obstacles placed in my way due to complications from Crohn’s disease.
I ask you to read this blog and hopefully you will be able to get a clearer picture of how truly devastating inflammatory bowel diseases such as Crohn’s disease and ulcerative colitis can be. My hope is that once this ordeal is behind me, I can hit the ground running (or at least walking) into 2016. My goal is to get through an entire year without having major surgery or complications. My real hope is that we find the CURE.
Health Challenges Ahead
For the past eight years, I have been struggling with my health. Some of you who follow my page have known about a few of my struggles; others may be new to learning that I have a very severe and complex case of Crohn’s disease. Every doctor I have ever encountered has termed me everything from an “anomaly,” to “complicated,” to “a nightmare.” It has been extremely difficult to walk this journey and try to maintain some normalcy in my life when nothing is “normal” with my health.
When I was 17 years old, I was so sick, and on the cusp of colon cancer, when the doctors decided to remove my entire large intestine and rectum. I underwent a total-proctocolectomy and was given a temporary loop ileostomy and an internal ileo J-pouch.
An ileostomy is when the small intestine is brought through the abdominal wall and waste is diverted to the outside of the body. This continence diversion allows for a person to expel body waste into an ostomy appliance on the outside of the body.
A J-pouch is an internal pouch using a portion of the small intestine made to take the place of the rectum and can be used to expel waste similar to any other person (minus the correct anatomy). My J-pouch was connected to a small part of my anal cuff left behind during surgery and left to heal.
Continued Obstacles
I lived with my ileostomy for four months then had it reversed. Physically, I looked “normal” from the outside, other than the abdominal scars I had from surgery. Doctors opened my bottom and the concept was that the J-pouch would emulate a “mock rectum” and function as an internal reservoir for waste out of which I would be able to go to the bathroom somewhat “normally.” However, I wasn’t so lucky.
In the entire time I had my J-pouch, I went into what essentially would be considered “failure” and was terribly ill for the 20 month duration I had it. My surgeon was trying hard to save the reconstructed organ because he was trying to take my youth into consideration. He was working hard to avoid giving me a permanent ileostomy.
So, I underwent another surgery to go back to a temporary ileostomy in hopes of saving all the reconstructive internal surgery I had done and save my J-pouch. It was not successful.
After 10 months, I underwent testing to see if this extreme procedure would work, but the doctors determined that there was a lack of blood supply flowing to the J-pouch and my disease had attacked everything. There was really no chance to save the tissue and intestine.
The doctors then made the decision that my best case scenario would be to remove the diseased intestine, remove the J-pouch and give me a permanent ileostomy. I was 20 years old.
It Takes a Toll
It is difficult to describe to someone how it feels to constantly have your life interrupted by illness. Although I have incredible family support, it has been a difficult journey to take as I watched my brothers and my friends move on to college when my six attempts at college were detoured by illness, to the point where I just gave up trying. I watched them move out on their own, get married, work a job outside the home, and move forward in life.
For me, it seemed that for each step I took forward this illness tried it’s best to push me two steps backward. I fought back EVERY step of the way. I have tried a myriad of medications, holistic healing, naturopathy, homeopathic, and dietary measures to help myself. If you can think of it, I most likely have tried whatever method to stave off this disease. Up until recently, (as I now am preparing for another surgery and have been taken off of several of my meds in preparation) I was/am taking chemotherapy drugs, biologic drugs, probiotics by the bottle-full, vitamins, dietary supplements, and numerous other medications to sustain my life and existence as best as I can.
Even if from all outward appearance I look “normal,” the crazy thing about this disease is that it is invisible from the outside. I guarantee if you saw me from the inside, you would know how truly devastating this disease really is. I feel that over the years and after numerous surgeries, I have been pieced back together, that all my mismatched parts have been stitched back like an old rag-doll that has seen too many days of wear and tear.
Since my initial series of life changing surgeries, I’ve had to undergo many more as I sacrificed more and more of my intestine to this monster. Last summer, I had another 30 centimeters of intestine removed, and because of a prolapse to my ileostomy, I had my ileostomy moved from my right side to my left side.
Shortly after surgery, I began to experience incredible pain around my new ileostomy. After numerous tests, the doctors found a subcutaneous leak where feces were seeping into my abdomen. Upon further testing, they also found a large abscess at the surgical site in my abdomen. Another major surgery was performed to open me back up. It was so bad; they could not close my abdomen. They left the incision open and I underwent what is known as “healing by secondary intention.” I was put on a woundVAC machine, and my wounds were packed and treated until they healed. I spent more than a month hospitalized and another six weeks with home healthcare nurses taking care of me with the additional help of my parents.
The Journey Continues
Fast forward to this year, and I still have not had much luck conquering this disease. I have yet to get through a year without major surgery or to even have lengthy respite from being in the hospital. Even this year I have been hospitalized five times since January 2015.
Earlier this fall, I started to experience incredible pain in my lower abdomen. Several days had passed, and the pain increased. I had been home alone caring for my nephew when I knew there was a bigger issue than just typical Crohn’s pain. I called my parents, who were out in New York visiting my brother. My parents cut their trip short, left NY, and raced back home.
Upon arrival my mom rushed me to the ER. I was immediately admitted inpatient with an abscess. The problem was that the abscess had formed in my lower abdomen where my anal cuff had been left behind from my permanent ileostomy surgery, and they sewed up my bottom. The mucosa produced from the tissue, along with bacteria, had caused a critical situation, making conditions ready for this disaster to happen. The abscess was located in a very vascular area and was affecting other organs.
The decision was made to transport me to another hospital more equipped to handle the level of care I needed. I was taken by ambulance, and by the time I arrived at the other hospital I had gone septic. I ended up in the ICU for several days and had to undergo emergency surgery to place drainage pumps to get the infection from my abdomen out. It was a terrible ordeal, and it is remarkable that I even recovered from being that sick.
After a week in the hospital, I was discharged with the pump, drains, and tubes still inside of me. As long as my mom could care for my apparatus at home, I could continue treatment from home. So I went, happy as a clam to get out of the place I so ungraciously refer to as “The Joint.”
However, this doesn’t end here. This is the reason for the inspiration for this blog post. I had the drainage system in a little over two weeks until the doctors were able to remove them. Unfortunately, this could be a reoccurring problem, and they said I may not survive another episode if the abscesses come back. In order to prevent that from happening, I need to have the entire area removed. This will entail the complete removal of the anal area, the muscle surrounding it, the internal area where the disease is showing, and any of the area where abscesses may form.
At this time, there is no way to know how deep it will be or how much will need to be taken out. The best case scenario would be about a three inch diameter section of my bottom, but internally I am not sure. Needless to say, I am extraordinarily frightened.
Actually, that doesn’t even come close to explaining how I feel as this disease continues to ravage my 25-year-old body and continues to claim one piece at a time. From diseased intestines, surgeries, hospitalizations, blood clots, infusions, transfusions, PICC lines, infections, and a number of other challenges, this disease has truly tested every bit of physical and mental strength I possess and it continues to do so. Fear does not own me, but I can honestly say it is ever present through this journey.
I was told the recovery time is six to eight weeks for this type of surgery. Each one of these surgeries makes my situation even graver and more challenging for an already challenged body. There are moments when I feel like screaming out in rage and beg for an answer to the question “WHY?” Other times, I feel like I just want to embrace life and celebrate EVERY. SINGLE. MOMENT. that I can. I choose the latter most often.
You Give Me Strength and Purpose
My surgery is scheduled for December 9th, 2015. I was able to obtain medical clearance from my doctors to travel to New York City for a few days before surgery to visit my brother, and I am really looking forward to that trip. I feel like having that to look forward will help keep my mind off the obvious event of surgery looming in front of me. Each moment to add good memories to my life canvas makes all the difference in the world! I am so eternally grateful for the many gifts in my life. I owe all to Allah, my family, Nate, my friends, my IBD family (Crohn’s and colitis patients and doctors), and you, my crochet family who keep me fighting when I feel weak.
I have shared with you before how much I value crochet. I have told you how crochet saved me, but you may not know what you have done for me every day that you showed up to watch my videos and work on my projects. You gave me purpose in an otherwise difficult time when I wasn’t sure of my value. You gave me reason to keep working, creating, and teaching. That is more valuable to me than all the medicine in the world. When I say, “I wish I could hug each and every one of you,” I truly mean it. Thank you so much for the contribution YOU have made to my life. Sometimes people say that I have impacted their life, well; it goes both ways. You have truly impacted so much of my life.
I will be taking time off from filming, but have managed to film a few nice videos ahead of time, to be released during my surgery and recovery. I hope to make a full recovery and get back to crochet and creating in no time! Please continue to share your work. I promise to keep checking back to see what progress everyone has made. As soon as I am able, I will be back, ready to hook my way into action!
Thank you for your patience and your continued support. There are no words that can express my honest gratitude.
“Keep your face to the sunshine and you will not see the shadows.” ~Helen Keller
Love and *Soft Yarn Hugs,*
Your crochet instructor, Nadia Fuad
If you would like to learn more about Crohn’s disease and ulcerative colitis, please visit the Crohn’s and Colitis Foundation of America’s website at www.ccfa.org
