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.

the past is real

Is it possible to have everything you’ve ever wanted? This is something that I have been pondering the last few months, as it seems that my life has finally fallen into place. Time and time again ive said how I never realized just how much this disease took from me and how much it impacted my day to day life until I was able to look back on it with a healthy pair of eyes.

            Anyone who knows me knows I have one of the strongest type A personalities imaginable. I plan absolutely everything, and I am very meticulous about it. When something doesn’t go according to my plan, it stresses me out beyond words. That being said, when I was younger and I was planning out my future, I saw myself healthy, with a family and a job living in a big city. Then life happens and your plans all get shattered in the blink of an eye. When I thought about my future I never imagined that I would be sick so young. I didn’t fathom the possibility of having to be on immunosuppressant drugs for the rest of my life. Never would I have guessed that I would have a major abdominal surgery at the age of 21 and another only 2 shorts years later that would result in me losing my colon, rectum, anus and gaining an ileostomy bag. This is something that typically would send me into a nervous frenzy, but for some reason it has made me a strong enough person to stay calm about it. People often ask me how I deal with the stress of what I went through and my answer is simple, it doesn’t stress me out.  If my dishwasher is clean at the end of the night I cant sleep until its unloaded…stress over the small things, but when it comes to my crohns, I am cool as a cucumber. I have often wondered how this is possible and I decided that its becaue I don’t have any control over my crohns and so I try to maintain control in all other aspects of my life. You never know how strong you are until being strong is the only choice you have.

            When I found out I had crohns, my expectations for my life and myself shifted. Instead of being able to plan everything out, my life became unpredictable. Everything would come down to how I was feeling in the moment, making it very hard to plan. My goals changed. My new goals became not having an accident at the dog park, or trying to run a mile without having to stop to use to find a bathroom. Getting sick puts your life goals on hold and really makes you evaluate what is important in your life. No, this is not the life I had laid out for myself when I was 15 years old. I have had to do things I would never have imagined doing. I have been through hell and high water. I have felt pain, and loss. But I have also been given a clean slate. For many people, the idea of having a bag seems like a prison sentence. For me, it has given me the opportunity to dream, and to begin setting new goals for myself. The chance to be able to do this again is priceless for me.

            I am not a typical 25 year old girl, nor would I wish to be. This disease has shaped me into more of a person than I ever imagined I could become. I surpassed my expectations of myself. I used to wonder to myself “why me? Why did this happen to me” and I find that with time, that has also changed. Thank GOD this happened to me. It has made me the strongest form of human being, and I wouldn’t change a thing about my life. Every night before I go to bed I look in the mirror and I touch my scars. Slowly, and one at a time. They represent so much to me about what I have been through and was able to overcome. They remind me that the past is real.

            So here I am, almost 8 months into my new life, and I feel like the luckiest girl in the world. I am happy personally, professionally, mentally, and of course, physically. I am happily married and living in that big city like I always dreamed, yet, I don’t feel like I have everything I want. This is because I have learned that you shouldn’t ever feel like you have everything, because you can always push yourself a little further and do more than you ever dreamed of doing. People who believe they have everything simply aren’t aiming high enough…

Here’s to seeing just where this new body will take me.

Hug your loved ones, this life is special…

C

support is gold

I’ve been spending a lot of time recently thinking about my support systems and what it means to be supportive of someone in need. I’ve had flashbacks to the moment the doctor called as I was packing for college to tell me “your preliminary test results show you have crohns disease”. Although my support system started long before then, this moment is when my army went to battle for me. It began with googling to see what crohns was and went as far as changing lifestyles to accommodate this new disease in the family.

When you are diagnosed with a chronic illness it feels like a death in the family. I know that is extreme, but that is what it felt like for me. A part of me died that August day. Life as I knew it was forever changed. Looking back on it, I am honestly blessed that I was given this disease. I truly believe that god gives his hardest struggles to his strongest warriors, and that’s what living with crohns has made me; a warrior. They say that “it takes a village” and I have found that this statement certainly applies to my life and my crohns family. My crohns family ranges from my husband, my family, my doctors, my friends, fellow IBD warriors, and sometimes complete strangers. So many people have played tremendous roles in supporting me the past 6 ½ years. . The examples of how total strangers have supported me usually involve restrooms. There were countless times that I would be standing in the long obnoxious line at the womens restrooms where I simply would not make it if I had to wait in the line. To all the people who kindly let me go in front of them without any hesitation when I showed them my emergency restroom card; you saved me from more embarrassment and pain than you know. I used to be that girl who would ask a total stranger if i could stop and use the restroom in their house, and without hesitation, most would let me. Being able to get support and advice from fellow members of the crohns family is one of the most comforting parts of support. Simply to know that there are other people out there who, like you, struggle with similar situations is comforting. We are able to offer each other first hand advice and share experiences. This support is golden.

Support comes in so many different forms. It can come in the form of laying on the bathroom floor with me as I screamed in pain, which was an every night occurrence for years. Support can be given by coming to the thousands of doctors appointments I have been to over the years. Support is squeezing my hand as the doctors drew countless tubes of blood and playing board games with me during my all-day treatments. Support comes in the form of sleeping in hospital chairs with me in the hospital because you didn’t want me to have to sleep alone. Support is coming to the hospital before the workday started, or even better, spending your day working from hospital cafeterias or waiting rooms just in case I was awake that day and wanted to go for a walk or watch a movie with someone. Support are the people who would get into fights with nurses because they weren’t bringing my pain meds fast enough and they couldn’t bear to see me in pain. Support isn’t only visible on the bad days, but of course means being there for the good times as well. Simply calling and checking in to see how I was feeling that day shows you care, and all those calls have always been appreciated.

Crohns is always on my mind, whether Im actively thinking about it or not. It has become a part of who I am the past 6 years and in turn has become a part of my entire network of supporters. Sometimes the best kind of support that I crave is simply not talking about this shadow called crohns disease that tags along with me everywhere I go. Reminding me that although it is part of who I am, it does not define me and never will.

To anyone who has ever done any of these things for me; I love you, and I promise to pay it forward.

C