A Temporary Transition

A Temporary Transition

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!

Until then, Happy Hooking!

~Nadia

A Precious Miracle

A Precious Miracle

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

Enjoy the photos.

~Nadia

 

 

 





Ten Years Later…

Ten Years Later…

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

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.

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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.

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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.

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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