Health Update: A Promise of Hope

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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.

So many mini squares!

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)

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.

Pinky Promise

Pinky Promise

So when you ask how I am feeling, the truth would be, I feel amazing.

Happy Birthday, Nathan Lyden.

Hand in Hand
“…It’s a blessed thing to love and feel loved in return.” ~E.A. Bucchianeri

~Nadia

84 responses »

  1. You are an amazing woman, and your story brought tears to my eyes, and shivers through my body. My brother in law was married for many years to a wonderful lady, whom also lived with Chrons and Colitis. Unfortunately we lost her a year ago, and not a day goes by that she is not in our thoughts. She was such a carring person, with a kind soul. Her passion besides her husband was her cats, who truly were their children. She always had treats in her pocket for any fur babies she may encounter when out and about.
    Take care Nadia, and God bless.

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  2. Nadia, Thank you so much for sharing your incredible story. You are a very strong person. From the sounds of things you have a wonderful supportive boyfriend and family. That is the most important thing support. Thank you again. I look forward to see all the wonderful things you show us how to make. You are very talented and a wonderful teacher.

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  3. Your happiness comes through.Not many men are like Nate.He is a blessing and you are lucky to be feeling so amazing…. ANGELS come in many different forms.You have one by your side.My best to you and Happy Birthday to NATE.

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  4. Happy Birthday mate … I will keep you in my prayers Nadia thank you for sharing you knowledge of crocheting with us I’m so very thankful for these 365 days of granny squares the stitches I have learned are awesome I look forward to learning so much more thank you so much God bless you..

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  5. I was brought to tears by your story…You have so much courage and strength even when you think you don’t, And i am so happy for you that you found someone to share your life. Your scars only prove you have lived and survived and they only make you stronger. I pray ever night for you Nadia you are an inspiration to me a woman of 61 years and everyone at every age. I think your amazing and you have taught me so much about crochet and living a fuller life and never take anything for granted God Bless You!! And thank you so much for everything you are and you do

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  6. Nadia ,thank you for sharing your beautiful story . You have encouraged many people and i am thankful that i found you on the internet . One for your crochet help and the other for helping others understand that sickness and other problems can be overcome with a good out look . Love your strength and personality . love one of your many crochet buddies

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  7. The more I learn from you,is amazing. You are a truly unique and amazing person, and that’s the part that leeks out through your writing and videos. I a m sure whoever is in your life are the most blessed. But just had to say “yeah sweetie I think you found your PERSON ” lol. Loved reading this Thank you for sharing your journey 😄💜

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  8. MashAllah what a beautiful gift to Nate YOU are. hope your health is like a helium balloon and can be stronger than the gravity.

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  9. You are an amazing person! Nate is a lucky guy to have your love. Thank you for sharing your story and your talents. I wish only the best for your future. Bless you.

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  10. I have to say reading that I felt tears roll down my cheeks, not because I feel sorry for you but because I’m so proud of how strong you are . Even through feeling horrible you can still set time aside to teach us, show us how to make some of the most beautiful things I’ve ever seen . You truly are an inspiration to me and probably many others.

    God bless you Nadia and Nate! Keep your faith and amazing spirits.

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  11. Thank you for sharing. I believe God gives your creative gifts only to people he is closely watching. Be in peace knowing so many of us are invested in your life.

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  12. Your story touches me in so many ways. It brings tears to my eyes, but yet they turn to tears of joy for you. You are an inspiration to everyone. I have learned so much from you and feel like I have joined a crochet family. I always enjoy coming home and crocheting with my new friend. Please know how many people you have touched and continue to touch. Good luck to you and Nate and my thoughts and prayers are with you every day.

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  13. Nadia I have recently found your you tube channel and had no idea that you were struggling with this. God bless you and stay strong and God bless Nathan for loving you through it. Your channel is the best one out there. You are brave to share your story. I will include you in my prayers

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  14. Nadia, like so any others, I look forward to your daily squares and other crochet lessons. I haven’t followed you that long, but am very grateful that you are willing to share your creative, thinking outside the box ways of viewing everything. I know there are times we get tired of being “strong” and tired of fighting for each step forward. However, I don’t think you know half the joy you bring to so many people you will never meet. You have been blessed with many talents and share them without expecting anything in return. To me, that is your true talent and probably one of the millions of things that brought you and Nate together. Thank you for all you have given to me and countless others. Remember that kindness like yours is never forgotten. Your spirit is truly a gift to all of us who follow, appreciate, and are inspired by you. Thank you.

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  15. Nadia, you are really amazing…I have prayed for you for a long time. I have been following you on youtube pretty much since you started. I am so happy you found Nate…He is the lucky one…you need to remember that. It looks like you are both a good team…You story brings me to tears…God bless you….

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  16. I LOVE YOU SOOOOO MUCH GIRL. I DONT KNOW IF YOU REMEMBER ME I TOLD YOU ABOUT MY DAUGHTER SARAH EHO HAS THIS BADTARD OF A DISEASE. SHE HAS INFUSION TREATMENTS EVERY 8WEEKS ( REMICADE) WHICH SEEMS TO KEEP IT AT BAY, BUT YOU NEVER KNOW. PLEASE KNOW THAT I PRAY FOR YOU ALWAYS AND FOR YOUR KIND WORDS.

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  17. Ma cha Allah, with every difficulty there is easeand after every difficulty there is ease. Nate has been a heavenly sent gift to help you stay strong through a difficult time in your life. Which of the blessings (favors ) will you deny. You are always in my prayers. Such an inspiration to us all. Stay strong, hold firm and with every stitch count your blessings. ❤

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  18. You’re so amazing, you deserve to be happy and have love. Your battle gives so many others a reason to fight their battles.

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  19. I admire you young lady you are a great person even as you go throu this bump in your rode. You still mange to be our teacher, which I love and have learned a lot. You have been in my prayers from the begin and continue. It is easy for us that are not in that position to say hang in there but the lord is with you and one day at a time my friend. I myself am going throu something not illness but an issue was gone for a year it was hard espically for something I didn’t do and still I can’t get over it burps one day at a time my friend with the lord help we will do well . Prayers my teacher

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  20. I couldn’t read through my tears. I cannot believe I have been blessed with knowing 2 of the most wonderful, caring, and selfless people, that fight Crohns Disease every day. My friend, more like a brother, who I have known now for over 20 yrs has been fighting since his 20’s also. The BOTH of you are such an inspiration to us all. Thank You for letting me part of your world. Love, Marsha

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  21. Hi Nadia,

    I commend your courage; I’m also glad to hear you have Nate to love you, see you for the beautiful person you are through and through! You’re both so fortunate in each other.

    I opened my emails while trying to stop a crying jag around my own pity party; imagine how glad I am to have received your email. The title ‘A Promise of Hope’ fair jumped out at me! It’s not that I think or feel any differently than believing life should be lived just as you and I do no matter the struggles. And most of the time, and I’m sure this is true for you, I live life to the fullest of my ability, in spite of my son’s death, as you do in spite of some pretty serious health issues. However, every now and again (and here’s where my writing of what I feel gets tricky 🙂 ), I just fall apart for a bit and give in to the pain, yearning for the impossible…

    So, don’t be too hard on yourself when you slip a little from being the person you desire to be; I still do it after 30 years living as someone I never imagined I’d be, and I forgive myself that as I’m only human. As I said, it’s about how hard we try – and I can see that you try very, very hard – and it’s also about how we see ourselves when reflected in another’s eyes. That truly is a beautiful, meaningful gift Nate gives you, and I’m fairly certain he understands your ‘moments’ as you deal with the frustrations of your illness.

    Thank you for helping me pick up the pieces today and resume being the me I desire to be. xxxx

    A grateful thank you, also, for all the wonderful patterns I’ve gladly received in the past couple of years from you. Perhaps one day I’ll design something half as wonderful and share it from the heart as you clearly do.

    Caro

    ________________________________

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  22. Nadia,
    Thank you for sharing your life with us. Your videos are easy to follow. Keep your chin up and remember good Thoughts, keep the negative out! They say laughter is the best medicine but a good cry is healing also. I hope that you stay out of the hospital. Happy Easter! And Nathan Happy Birthday! My youngest son’s Birthday is the 31. He will be 12! Enjoy your special day Nate. Make it all about you! OXOX

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  23. god is with you !!! you are a fighter and have faith, that is what matters , slowly but surely you are going to be well!. we need you , to show us this beautiful gift of crochet that you have . your work is outstanding !! gorgeous ! beautiful !!! god bless you nadia always . we all love you !!

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  24. Just reading this. I am a believer of an awesome merciful God. I believe 100% what you said: ” God doesn’t give you more than what you can handle “. I am a witness of that myself.
    God is using you as a tool of.faith and courage to others. You have inspired me and many , many other people with your gifted hands.
    Thank you very.much for been so positive and your lovely laugh.
    You will be in my prayer list.
    Flor

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  25. Nadia, what a strong lady you are, you’re amazing. You are a very talented person, who can look on the positive side of life. I’m pleased you have the support of your family and friends, and pleased that you have Nate by your side. Thank you for sharing with your followers, and I wish you very many years of being able to share your special talents with us. God bless you Nadia, Sending you big hugs xx

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    • Nadia,

      Thank you so much for sharing your blessing and very personal story of struggle, perseverance, and faith. Although I am far behind (day 50), I am really enjoying the 365 Days of Granny Squares. Keep the faith, love, and laughter.

      Peace and Blessings to you.

      P.S. Your father is a **Rock Star***

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  26. Nadia,

    Thank you so much for sharing your journey and gift. I’m happy that I finally had the chance to sit down and get to know the person behind the crochet. Although I am far behind (day 50), I am really enjoying the 365 Days of Granny Squares. I must admit that a part of me wants to keep then all to my self, but that would be a waste. Thank you for your inspiring story of struggle, perseverance, and faith.

    Peace and Blessings to you!

    P.S. Your father is a **Rock Star**

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  27. I have been watching your crochet videos for momths now. When i want to make something I always check to see if you have a video for it before making it. Lol. I am a beginner at crocheting but your videos have made it so easy. I just read your story. You are an inspiration to us all. Your such an amazing person. Thanks for all that you do.

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  28. I am SO inspired by you! You are an amazing, beautiful, and extremely talented woman. Thank you for sharing your story and your creations with us. I am a little late to the game, but I am looking forward to jumping in to the 365 days of Granny Squares! I can’t thank you enough for the inspiration!

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  29. All I can say is. “wow”.. Your one brave strong young lady, your life journey has been a long one, I can’t believe how much you have had to endure!!. I have to say your story enlighten me tho. I am alot older then you but I have had Crohnic pain from fibromyalgia and disk disease since 2004 and its pretty bad at times.. it also took my joy, but after reading your story I have letting the pain steal my joy!! Your my New inspiration young lady. God works in mysterious ways I will be praying for you everyday now in my Morning prayers!!! Your truely amazing having to endure this illness!!! and I also thank you for your crocheting lessions.. I love them all!!! God Bless you Nadia ❤

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  30. Hi Nadia, all I can is WOW!! Thank you so much for sharing your TESTimony (you can’t have a testimony without first going thru a TEST). Your words have brought so many mixed emotions. At first I wanted to cry…then I thought. ..why cry? She’s a fighter, she has strenght! she has hope.. most of all she loves God. God said that he wouldn’t put more on us than we can bare. Life and trials do get heavy at times but we are suppose to give it all to God and He WILL carry us through it ALL. It’s wonderful that you have accepted that this is your journey and your path in your life. Thank you so much for sharing your journey with us. We all have to remember that what we go through in THIS life is not about US… WE are just pilgrims passing through this life to touch others that we meet… to encourage others that we meet that might not be as strong as you. God truly gives us the strength to face life’s trails. Stay blessed Nadia!! Keep fighting a good fight of faith and continue to hold on!!

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  31. I just finished your pattern for the mermaid outfit and it came out gorgeous. Thank you for wonderful written directions and fantastic tutorials. I have been crocheting since Im 10 or 12 ( Im 53 now) by my mother’s side. She’s gone now, but when I’m crocheting or working on a craft project it feels like she is still sitting beside me. I wish I had found your directions first because I had purchased another pattern but the directions were horrible and no tutorials – I literally spent 2 days trying to figure out the crocodile stitch (never used that stitch before) with no luck. Then I came upon your site and thank you, thank you, thank you – your directions and tutorials were excellent. I can’t wait for my great niece to be born (in July) so I can see her in this adorble outfit. I also made her her christening outfit which my nephew and his wife loved!

    So, when I found your blog and read your story I just had to write to you to say hi, thank you, and you are truly an inspiration for others – keep up the good work and positive outlook. Your boyfriend sounds special, but then so again are YOU! I hope you stay in good health, and find love and happiness. I wish I can find someone like that.

    I’ll try to post a picture of my mermaid outfit if I can figure out how to do it on your site. (LOL)

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    • Thank you so much for your kind words and your legacy of crochet. I’m so excited that you found my site and were able to make the mermaid outfit! If you are unable to share a photo here, you may share it to the Facebook page or send me a message on Facebook! I’d love to see it! I’m sure your great niece will look adorable in this outfit and the christening outfit you made. I’m grateful for everything you said in your comment. Thanks again, love, Nadia

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  32. Nadia, I first found your blog accidentally while looking for some crochet patterns. I used to crochet when I was a kid and recently picked it back up. I LOVE your patterns and tutorials, and just completed the cute little octopus to give as a gift. Thank you for sharing these!

    I’ve also started to read other parts of your blog, and am thankful that you are sharing your story. I also have IBD (ulcerative colitis) and consider myself one of the fortunate ones, as I don’t have as many issues as others do. My brother was recently diagnosed with Crohn’s disease–his case is severe. Other family members also suffer from UC or Crohn’s, I guess we hit the genetic lottery! More of us need to share our stories because IBD is a disease that isn’t talked about very much, but in order for others to understand it’s necessary. I’ve always said that in some ways, I’m thankful for my disease because it changed me for the better and helped me to become a more positive person. All of my bad days help me to appreciate even the mediocre ones.

    I’ll be following you here, and will have you in my thoughts and prayers. Thank you again!

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    • Thank you so much for your lovely words and your kindness. I also appreciate that you reached out and shared a part of your story and your journey through UC as well as your brother’s with Crohn’s. It is very important to talk about these things and open up about the struggles because so many people are not aware of the devastating effects this disease has on our lives. My disease has been so progressive that I feel like it has robbed me of so much. I HAVE been so blessed in other ways because of going through this, but it was not easy and never will be. My heart and prayers go out to you and your family as I know that this has hit you so hard. Love and hugs, Nadia

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  33. You are so Amazing and so blessed to have someone so wonderful in your lift to stand by you my prayers go out to you and your family In the name of Jesus your whole body be heal, thank you so much for the teaching of crochet I have made couple of you patterns and family and friends love them I have try to leave a comment on Y may the be with always youTube but doesn’t allowed me. I really appreciate you for sharing your short I pray all is well☺

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  34. Dear Nadia, like so any others, I did cry reading your story — both tears of sorrow and joy for you. Your attitude of hope is inspirational. You have many, many students who are hoping that your health continues to improve without setbacks. I wish you well, and have you in my thoughts and prayers. Blessings to you and Nate in your journey.

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  35. Mashallah, Just started making your cream Cardighan & read your story… “Your A Brave person Nadia” you will be Remmbered in my prayers, May Allah give you happiness… Ameeeeen 🙂

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  36. I have just read all your blog and in so many ways I understand, not because I am dealing with it but because I live with my partner who has Crohn’s disease, he has been living with it since he was a young age and its not a very nice thing to have, he has all the scars and all the medication that comes with it.
    I love that you found something that you love to try and keep yourself busy and I love everything you do x
    the fact that you have found someone who loves you for you is beyond words… I love the fact that people can look past the illness and see the person that is dealing with it all on a daily basis..
    sending my love and best for the future in everything you do xx
    lots of love charlotte xx

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  37. Nadia, I recently started learning to crochet as my mother in law kept on at me about it and I needed to find something to de-stress. I have UC (thankfully not too advanced) and as you know stress makes it a million times worse.
    I came across your site “accidentally” as I was looking for a scarf pattern and your video was easy to understand. When I read your health blog, it felt like it was meant to be. You are an inspiration in your ability to be candid about this horrid disease, which makes me feel less alone and your tutorials are easy to understand. Thank you for sharing. I’m officially hooked 🙂 Stay strong even in those really horrible days. You have people rooting for you, especially me.

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  38. Hi Nadia! I´m from Argentina. I love crocheting, my grandma taught me , when I was ten.Then I didn´t crochet for more than 35 years. I found your blog, by chance.I love all your tutorials, they are great! You are very inspiring, amazing and strong. You will be me in all my prayers, I wish you a happy and healthy life!!! Thanks for sharing

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  39. Hi Nadia ! You are an amazing lady and so inspiring. I hope you feel better everyday. I am lucky to find you on IG and always read your daily post. I do not know how to crochet but trying hard with your 365 daily granny’s square …. I am way way way behind … I am very slow … but to me its ok … I started and will finish it although it takes longer then 365 days. TQ so much for sharing all about your health and crocheting … God Bless You and family. You have an amazing husband too. Keep posting and blogging … Take care and regards from Indonesia.

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