scars

    

Ive been spending a lot of time recently thinking about what it means to live with a chronic illness. I have been so fortunate the past several months to be healthy enough that I almost forget what I have been through and whats in store for my future. Almost. That’s what its like living with a chronic disease. Tomorrow is never promised. I have been through more in the past 8 years living with crohns than many people will have to go through in a lifetime. But the reality is that I am only 25, and I have the rest of my life, both the good and the bad, in front of me. My crohns, although in the background right now, will be a shadow following me around for the rest of my life. I walk around everyday waiting for it to jump out and say “BOO! Im back” but I will never know when that day will be. I have had to choose to live my life in a way in which I am not scared for tomorrow or for that day to come, but rather to enjoy my healthy life to the absolute fullest and be prepared for the day that the doctor tells me my crohns is active again.

Having a chronic illness affects so many more parts of your life than just the one area it targets. Crohns may be a digestive disease, but it impacts so much more than that for me. Both mentally and physically living with it is exhausting, scary, and difficult. My crohns may have taken my colon, rectum, anus, and 9 inches of my small intestines, but it has taken so much more from me than that. To a person on the outside looking into my life right now, you may not guess im sick. Yes I wear an ostomy bag under my clothes, but I also do everything any other 25 year old would do. This is a double edged sword for me because although I look normal, I really carry around more scars than the ones visible to the eye. People often say to me, “but you don’t look sick…”. No one understands how hard that is to hear. Although I appreciate it, looking sick isnt the whole story, theres much more than that under the surface. River and I have been

trying to start a family for a year and a half, it’s a scar I carry with me inside. My crohns took away my ability to naturally start the family I so long for. Because of all the pelvic trauma and surgeries ive undergone, scar tissue was formed as my organs shifted to compensate for the colon that no longer is there. This scar tissue formed around my uterus and blocked my tubes. The point of my story is that you cant judge a book by its cover because you never know…

My crohns, for now, has taken a backseat to my everyday life. I spend my days doing things I love and am always grateful that I am able to do these things. I have found myself feeling guilty for not finding the time to update this blog as often as I want or should. When I started this blog it was a form of therapy for me. It then quickly because a form of therapy for others. I am proud knowing I have helped at least one person with crohns or someone learning about crohns through my writing. I want to take a risk and turn this blog back into its original purpose for me; therapy. I just don’t require the same therapy as I did before. I find that my struggle with infertility is a lot harder to put into words than my struggle with crohns. I don’t talk about it, I don’t like talking about it, I don’t want to talk about it. But I feel that I need to talk about it. Its such a painful and personal subject and ill keep you guys posted on this new journey.

For now I choose to be happy. I choose to be thankful. I choose to take every day as it comes and remember the darker days where the crohns controlled my life. For now I choose awareness. I choose talking openly and honestly about what I suffer from living with an invisible disease.

all is great, but nothing is perfect

The past few months have been a total whirlwind of emotions. We are officially moved in and settled down into our home in Cleveland and couldn’t be happier. The process of moving and accepting a new normal is never easy and as much as I wanted to move home to Cleveland, I had a harder transition then I thought I would. Saying goodbye to the city and the people we had met along our journey was heartbreaking, but in the end I know we left with family that we will remain close to for years to come. As far as being homeowners in Cleveland, it has been everything we dreamed it would be. We settled right back where we left off in Cleveland and have been enjoying everything it has to offer, including our cavs season tickets! Moving was honestly the worst thing ever and I don’t think I want to do it again for a very long time. Having a place that is ours to decorate and use however we want is an amazing feeling, but is also totally exhausting. For several weeks I ate, slept, and breathed unpacking. Things have finally calmed down and we are able to sit back and enjoy all the time, energy, sacrifice, and hard work it took to get us to the place we are now.

We’ve both been working our new jobs for a little over a month now and are so incredibly happy where we are. The transitions were pretty major, but we both seemed to adapt well. River went from a midsize accounting firm in manhattan to a single man CPA practice in Cleveland. He joined Charles Den Heijer CPA, where he is working alongside Charlie running the company and doing some VERY exciting tax work. He is slowly and enjoyably learning to be his own boss. I on the other hand went from being a nanny for two families to working for a global company. Holy transition. I joined the Hyland Software staff in Westlake, Ohio where I became an infant teacher at the child enrichment center (CEC). I am so incredibly in love with this company, my co-teachers, the families, and of course, the 12 goofy babies I get to see everyday. Its such night and day compared to what I was doing before, but it is such a great fit for me.

Crohns wise I am doing very well. I had some nerves about potentially having a flare during this move because of all the stress, but my body handled it very well and everything went smoothly. Saying goodbye to my teams of doctors in New York wasn’t easy, but I am slowly re-establishing relationships with my doctors in Cleveland to make sure everything stays on track where it needs to be..

All is great, but nothing is ever perfect. Life is a game of balance and sacrifice, and we all know that we cant always get what we want. As happy and blessed as we are in Cleveland, we’ve also been dealing with some loss and hard times. We have wanted to have a family for as long as we’ve known each other and we understood that with my surgery last year that was going to become much more difficult. A year later I sit here healthier than I could have ever imagined and so happy for that, but aching for the one thing I don’t have; kids. Its been a really personal struggle that we haven’t been able to talk about much, but we’ve recently learned that despite trying, we really aren’t going to be able to naturally conceive. It was a very tough dose of reality to swallow, but I understand that life has balances and I sacrificed this in order to be healthy, something that I will never regret. River and I will have a family, we just now know that it will not be how we hoped it would. Were starting to explore our options, and I will share them with you when I am ready to talk about it.  

For now, we are ecstatic to be exactly where we are in this moment and are looking forward to our first holidays in our new home. Well never forget what it took to get where we are.

Love and hugs,

C

Dear Ostomy

Today is a special day to me for so many reasons. Its hard to not be emotional today, and I find myself overwhelmed at everything im feeling. For starters, I am writing this post from the living room of my new house. Granted I am sitting on the floor because we have no furniture, but that point is irrelevant at this point. We bought a house. I am so excited to finally be able to share the news as ive been holding it in since July 3 when we put in our offer. I’ll always remember that day, I was a ball of nerves waiting to hear back. We were on a hike in the hills of Petaluma, California and doing this all by phone, but this was our house, we just knew it. My cousin will laugh at me and say I was a total disaster and that I let my minions take care of it for me. What a special day. And now the day is here that we have officially claimed it as our own. Moving is also a double edged sward and as I have been dying to relocate back to Cleveland, every day closer to leaving new york has been a struggle, something I didn’t expect. I really believe that each place you live leaves a mark on you forever and its something you carry on to your new home. I feel so blessed to be in the position to be homeowners at the young age of 25 and I cannot wait to turn this house into a home and start my family here. Both of our families have been beyond supportive and we are so excited to be closer to them and spend more quality time together, aka, were coming over for home cooked meals all the time. Today has also been a huge milestone for me medically. One year ago today I was finishing up in surgery. Looking back on all ive been through in the past couple of years, both before the surgery and shortly after it, there were times I honestly didn’t think I would make it. Hell, there were times I wish I wouldn’t. One year later and I am the healthiest and happiest I have ever been in my life. Its amazing how those two things come so closely hand in hand. I have so many vivid moments from a year ago that I often play back in my head, flashbulb memories. I remember what I was wearing when they told me I needed surgery, I remember what I ate the night before my procedure (buffalo chicken pizza duh), I even remember the last time I farted, something I cant do anymore.  My future was so uncertain, and it was horrifying and exciting all at the same time. I don’t personally know anyone with an ostomy so it was uncharted territory to me. As amazing and supportive as my husband and family are, they would just never understand. I have found some amazing friends and a great group of support because of this ostomy and the support groups designed for them. People who understand me, its very refreshing. I owe my life to my ostomy and there are so many things I would tell it if it was a human, so, I decided to write it all down. Here it goes. Cheers to one hard, happy, hell of a year down and many many more to go.

Dear Ostomy bag,

Its been a year since we met and I can officially tell you that it has been the best year of my life. My whole life was leading up to the moment you were born, and although I had hesitation about getting you, you didn’t and haven’t disappointed me yet. Im not going to lie to you, I never wanted you. Although you were always a potential in the future, I stuck the thought of you in a box and vowed to never open you. Three years ago I said I would rather die then have you and now, a year after I almost did die, I am thanking you for the life you have given me. We weren’t fast friends, and we have definitely had our moments of hatred towards each other, but that was to be expected. At first I felt like you were stuck to me like a leech and you were literally sucking the life out of me. I resented you. You were a change in the way I had lived my life for 24 years and you were not welcome to me. But very slowly and then all at once I began to feel better, and then I began to feel like a whole new person, and I have you to thank for that. You changed my routine and made my life all kinds of upside down, but in the end I realized that this wasn’t a bad thing, but actually a blessing. A year later, were best friends, partners in crime even. While I used to be repulsed by you, I am now proud of you and openly brag about you to everyone I meet. You no longer are a thing that happened to me, but rather a part of me that I wouldn’t change for the world. I realize not everyone likes you as much as I do. The reality is, you’re pretty gross and the rest of the world views you as a death sentence. To those people I defend you like theres no tomorrow. I would go to battle for you against anyone who had anything negative to say about you. This year the CDC in an attempt to get people to stop smoking showed a commercial in which they portrayed ostomy bags as a nasty consequence of smoking that clearly no one wants. It infuriated me. How dare someone use you as leverage for scaring people. I fought for you and made my voice heard. I didn’t get you because of a choice I made, but rather because it was fate. I believe I was preparing my entire life for you. We were destined to end up together but I needed time to be able to accept you. I will never be able to thank you for what you have given me. I know sometimes youre an asshole (no pun intended), but for the most part you are me, and I am you. We literally go everywhere together, and this past year we have gotten to do so many things that just a year ago were only dreams, things I never would have been able to accomplish without you. I feel like a better version of myself with you, finally being able to live the life I envisioned for myself. There are days when I feel sorry for myself because you make me different from everyone else I know, but then I realized that all those people love you too, because you made me ME again. It has been one hell of a year together, and I am blessed to have been able to spend with you.

Love, Celina 

whole new birthday

For the past few weeks I’ve realized that I no longer have much to blog about. My posts used to be an outlet for me, a place where I was able to vent some of the frustrations of living with a chronic disease. At first the thought of having nothing to talk about bummed me out until I understood what exactly that meant. It meant that I’m healthy. It meant that my crohns is under control and not as prevalent in my everyday life, giving me less opportunity to talk about it.

This got me thinking about opportunities and what an incredible one I have been blessed with this year. At this point last year I was really struggling. I was still in a new city very far away from my family, unable to explore my surroundings, causing me to feel trapped within my own body. For anyone who has never felt this way before, it’s a horribly scary, sad, emotional, and frustrating feeling.  It feels like everything is just out of reach and no matter what you do, you can never succeed. For many years my body and my mind weren’t on the same page. My mind was adventurous, young, excited, and passionate. I craved love and laughter and spontaneity. My body felt old, sick, and just worn down. There were some dark days when my body wouldn’t let me get out of bed. I had to set small goals for myself that felt below my minds capabilities. Walk around the block today. Make dinner. These all seem like small tasks, but to me, they were exhausting and painful and my body would often feel it the next day. These small things didn’t just exhaust me physically, but emotionally as well.  I consider myself to be a fairly optimistic person.  I believe that you have to be to live with a condition like crohns disease. I always hoped for a better tomorrow but there were times when I would really evaluate the pain I was feeling and ask myself “how long will I have to live in pain like this”.  Looking back now I feel so proud of myself that I was able to come out of those darker days stronger and with a smile on my face.

Now , instead, I ask my self; “how much longer do I have to live healthy like this, and what can i do with this time”. I am so blessed to be given, what feels to me like, a whole new start.

Today happens to be my 25^th birthday. Birthdays are never anything special to me, I don’t really like cake, I hate surprises, I don’t feel any older…But this birthday really makes me emotional and feels very personal to me. I am 25, but I feel like this is my 1^st birthday. I feel like a different person than the girl who turned 24 last year. That sick, scared, unhappy, tired girl is gone and I write this today with tears in my eyes thinking about all the things I have to celebrate today. Year 1 of new me.

This birthday is also a very fun and family filled one for me.  My person, my younger sister Kyra comes home from Asia today! Shes been abroad for a month and I missed her dearly. This week I will get to celebrate with all of my favorite people and I couldn’t be more excited about that. We are also getting to do some traveling next month, im heading back to see my cousins in Petaluma/san Francisco and this year river gets to come with me! Were spending 10 days out west, and I cant wait. We also fully intend to enjoy all the things new york city has to offer since we weren’t able to last summer. Aka lots of food.

Today, I will be basking in the sun with my boys and going on a date with Taylor Swift. Life is good.