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

6 months and CLEAN

Today is a good day. I am writing this from the comfort of my bed on this snowy day in NYC. I have one dog on my side and the other laying his head across my belly, making writing near impossible but too dang cute to make move. They can always sense when something is going on with mommy. At this point im not sure if they knew I had a procedure done this morning or if they see my suitcase packed in the living room ready for my trip this weekend and think that if they are able to trap me in bed I wont leave them. Either way, I will happily accept the cuddles. I am especially spoiled today because River got a “snow day” and is working from home.  As much as I love these days, I hate them because all I want to do is cuddle and see him, but he’s got loads of work as usual. The past few weeks have been majorly stressful for him and we are dying for busy season to end, #accountantprobs

         Medically I have been feeling overall amazing. Several weeks ago I began having some pain and tenderness as well as a noticeable ulcer on my stoma. Its hard to distinguish between crohns pain and a stomach pain or blockage at this point because everything is still pretty new to me. This time around we are obviously not going to take any chances with the possibility of crohns coming back and flaring in my remaining small intestine so we decided to schedule an ileoscopy. This procedure is essentially a colonoscopy, but considering I no longer have a colon or a hole down there, they have to go in through my stoma. Yeah, it seems pretty weird and it took me a while to wrap my head around it. I have no feeling in my stoma, but it responds when you touch it like a little alien creature. The thought of sticking something in it gives me goosebumps. Luckily for me, they knock me out. I always look forward to this part not only because lets face it, anesthesia is fun and I get a good nap, but I always make a fool of myself afterwards and I have a husband who finds joy in recording these moments. Today he asked me what my deepest darkest secret was. Talk about taking advantage of me at my most vulnerable. My answer was “sometimes I lie about how much stuff I actually buy online, but at least I look hot in my clothes”. No joke, I have it on video. These videos of me in the hospital and during procedures are always nice memories for me to look back on and remember how things once were.

         As for the results of today, totally normal. NORMAL. When was the last time I was able to say that? These procedures were always bittersweet for me because I used to pray that they would find something wrong. How messed up does that seem now? The worst feeling in the world is when you are in pain and can feel something is wrong and the tests show otherwise, it was always my worst fear because that way there is nothing to fix. That being said, my tests always showed there was something wrong (of course) so I never had to deal with that problem. 

         Six months. I cannot believe its possible that it has been that long. I certainly have gotten used to this lifestyle of being an ostomate, but I have also kind of fallen in love with it. The list of things I am able to do now that I couldn’t before is longer than I can say and ranges from large things like not having to wear a depends (this is the lowest I have ever felt in my life and its very hard to share) to being able to drive on roadtrips. I am driving to Buffalo tomorrow by myself and if I didn’t need to stop for gas I would be able to make it the whole way without stopping. I wouldn’t have dared even attempted this trip solo before. Granted I have lost some things also. Like the potential to start a family the way we hoped. I cant even get started on that topic…and mushrooms. I miss them so much I cant even explain. They are one of the few foods I have had to officially give up, such a bummer. Something I feel very proudly about is the fact that I feel no shame or embarrassment about my bag, and why should I? before the surgery I was paranoid about finding clothes that would cover or hide my bag, but honestly, who cares? Now I all but walk around and show strangers on the street. I wish more people were this way, because as proud as I am of how this bag has saved my life, I know that for some people it has ruined theres. I think that mentality of the stigmas associated with ostomys needs to change. Speaking of which, for all my Cleveland friends I have a favor to ask of you. At the Cleveland film festival on march 18-29 at tower city there is a documentary called Semicolon; the adventures of ostomy girl. From what I have read it sounds extremely similar to my life, a young girl who has battled crohns and ended up with an ostomy. GO SEE IT because I cant and I really really want to. There is also a documentary called In/Out; my struggles with IBD that comes out on vimeo March 10. Rebecca is a fellow ostomate who I am friends with via facebook who had her surgery the same week that I did. Her situation is a little different in that she is having a takedown surgery and will be given a J-pouch, something that is sometimes an option with colitis patients but wasn’t an option for me with crohns. Her story is pretty freaking inspiring (she ran a ½ marathon for IBD just a few months after surgery) and I cannot wait to see the documentary. You can also check her out on Facebook or twitter; Rebecca Zamolo, she does all kinds of awesome awareness for IBD

         Anyways, this weekend I get to escape the city and go back to Buffalo. It still feels like home there and I cant wait to see everyone that we left behind. Of course its supposed to be like 45 degrees in the city this weekend and like 15 in buffalo…great.

         Today was a great day. And I fully intend to celebrate by watching Shondaland with my husband tonight.

Hugs, C

happy is healthy

Being happy is being healthy. These words are on a poster I walk past on my way to work everyday and they have become the way I choose to live my life. I never understood before how these two things were intertwined but now I do. I have always considered myself a genuinely happy person. Those who know me know I may not have the best sense of humor, as I often don’t laugh at jokes or find the typical “funny movie” funny. But I was always able to find happiness in other places. I was happy being outside. If I had a choice I would spend everyday outside. I found happiness in traveling and exploring the world. I always had a smile on my face when I was on adventures with my dogs in the woods or at the beach. Doing things with my husband gave me the greatest joy. Whether it was a walk with the dogs, or going to a new restaurant or our favorite museum, I was happy. These are all things crohns stole away from me over the years, and with that, it took my happiness. I was robbed of precious time and memories that I will never be able to get back. A simple task like walking down the hallway to get the mail was often interrupted because I couldn’t make it 20 feet without having to run back to the bathroom, sometimes not even making it. This caused a debilitating anxiety that plagued me everyday. How could that not make you anxious and unhappy. I am living in the best city in the world and for a year I was confined to my apartment. That is unhappiness. 

Looking back, I didn’t realize just how unhappy I was, and those around me would have never been able to see on my face the daily struggles I was fighting inside. I hid it well with a poker face and a smile. It is now that I know what happiness is. Happiness is being healthy. Happiness is being able to run 5 miles everyday. Happiness is being able to be spontaneous and not have your entire day based around where bathrooms are located. Happiness is being able to delete the bathroom locator app off my phone for good. Happy is healthy. It takes my breathe away trying to put into words how grateful I am to feel this way.  

I am happy, but I am also humble. Although I feel the best I have ever felt, I feel the pain of my fellow crohnies and ostomates who aren’t able to experience this happiness yet. Who still deal with crohns taking a piece of them away everyday. 

I am happy, but I am hopeful. I am hopeful that science will find a way to cure these people. IBD is such a horrible and sad disease. We are often judged by the way we look on the outside, and I am a perfect example that you cant judge a book by its cover and this is true in many IBDers cases. We may not look sick on the outside, but are extremely sick on the inside .

I am happy, but I am grateful. There are many others who have it way worse than I did in the lows of my disease.  Rivers aunt passed away after a long fight with cancer on Christmas day. Being sick you are able to relate to each other and appreciate the battles each other faces. I will live my life in a way that she wasn’t able to live hers, because I am here and I thank god for that everyday. 

I am happy, but I am scared. I am so scared that my crohns will find a way to “stir the pot” and come back to haunt me. Lets face it, I don’t have the best track record with this disease and I have nightmares about the day that the doctors look me in the eye and tell me that my crohns is out of remission. 

But for now, I am genuinely happy. My husband often just looks at me and gets this beaming smile. The kind you can see in their eyes as well as across their face. When I ask him what hes thinking he just smirks and says that I look more alive today than I ever have in my life.  He is right. Being happy is being healthy.

Today marks 3 months since my surgery, and I have so so so much to be thankful for this year. Minus the freezing cold weather, this is my favorite time of year. I love the holidays and everything that comes with them. I love the food, the decorations, the family…One year ago I began my drastic downward spiral in my disease. I had just moved to New York and was lost, physically and mentally. I had to cut ties with all of my trusted doctors and move to a completely new place, almost blindly. I was so sick I had to leave my job and attempt to focus on my health and figuring out what was going on. I spent both Thanksgiving, Christmas, and New Years in a tremendous amount of pain and suffering and I missed my favorite time of year and ended up in the hospital for a week. These are memories I will never forgot. This year, I feel like I am looking at the world through an entirely new pair of eyes, a healthy pair. I am able to finally see the beauty that the holidays have to offer and I couldn’t be happier about it. Its become more and more evident to me that the city life isn’t for me, but even I have to admit that the city comes alive during the holidays, it really is magical.

            Thanksgiving is my favorite holiday of the entire year. Rivers birthday always falls in the thanksgiving break, and it’s a lovely way to kick off the holidays. We were fortunate enough to be able to spend a week in Cleveland for Thanksgiving and it was just what the doctor ordered. Anyone who knows me knows that my sisters are my absolute best friends in the world. My younger sister Kyra is my mini me and it was so hard to get through my surgery without her by my side. Before thanksgiving I hadn’t seen her since before the surgery. I couldn’t wait to show her my new “accessary” and tell her all about it. Needless to say, she thought it was pretty impressive. We spent the weekend acting like hooligans and of course, eating like pigs. Naturally, Sunday was spent at my dads watching the Browns win. Of course this wasn’t done easily and they had us on the edge of our seats all day. Chagrin falls feels more and more like home everytime we go there, again, especially during the holidays. On Rivers birthday we were lucky enough to get massages. Leave it to me to get major anxiety about a flipping massage. This is the first massage ive had since getting my bag and I haven’t yet been able to lay comfortably on my belly. Of course I had nothing to worry about, they were very compassionate and understanding and I wasn’t their first ostomy customer so they knew exactly what to do. For Rivers birthday dinner we went to our traditional birthday dinner location; benihana with my family and Rivers.  Although this week was supposed to be a “break”, anytime we are in Cleveland we make lists and lists of things we want to do, yet we never seem to scratch the surface. On Wednesday we went to the Cavs game. The atmosphere is so insane now that Lebron is back, its amazing the things he is doing to unite this city. Still goosebumps…

            Thursday was of course Thanksgiving. My mom, as always, cooked an amazing meal and we spent the day cooking as a family and playing games, it was wonderful. This thanksgiving felt different for me (as many things now do), and I spent a lot of time thinking of all the things I have to truly be thankful for this year. My family. Of course every year I am thankful for family, but to really see how much they are there for you in a time of need makes it so much more special. My family has never once judged me, but instead goes above and beyond to make me feel comfortable. Really I am not able to put into words how thankful I am for them, but they all know, so I will leave it at that. I am thankful for my job. Not only am I thankful to have a job, but I am thankful to have found a second family within my job. When I was sick they could have easily let me go, but instead they told me to take all the time I needed for my recovery, and sent me numerous words of support and encouragement. I am a lucky girl. I am thankful for my medical team. With a condition such as mine, that requires me to seek medical care often, it is so important to me to feel comfortable and confident with my doctors. I put all decisions up to my doctors and my surgeon, and when I thought I wasn’t going to make it, they gave me faith and found a way to change my life forever. The fact that I have their cell phone numbers and they often call just to see how im doing speaks worlds, I am not just a number to them, but a person. I feel beyond fortunate to have amazing insurance that provides me with this world class care, and I never take it for granted. Ostomy supplies are extremely expensive, and I will not require them for the rest of my life. On average, my monthly shipment costs around $600. That almost $7,500 a year, and if I live to be 84, it will cost me around $500,000. How someone could manage this without insurance is beyond me. I am thankful for my friends, both old and new. Even if we haven’t spoken or seen each other in years, your words matter to me equally. I am thankful for each and every call, text, message, email that I have received in the past few months letting me know that you are here for me. I love you all. I am thankful for my fuzzy boys who I attribute much of my recovery too. Animals have an amazing 6^th sense where they can tell that something is wrong. My dogs personalities changed when I was sick and they are finally back to being happy dogs now that they see mama is healthy and happy. Lastly, I am extremely thankful for my disease. I understand how that sounds, but it is true. I have gone through more highs and lows in the past 6 years than I hope any of you will have to go through in a lifetime. This disease has helped me find out who I really am. With a medical condition you learn so much about not only your body, but your emotions. I have had to dig deep to places I never knew existed to find a strength I never knew I had. But now I do. I am an IBD warrior, and I always will be, and I am proud of that.

This week is IBD awareness week, and I am so touched by all the support that I have seen. I cannot stress how important awareness is. Someone you love has IBD and fights everyday for a cure.

As always, tell those you love how thankful you are for them and how much you love them.

Happy holidays, C

The past few weeks have held major turnaround for me. Today is officially 2 months since my surgery and looking back I cannot believe that much time has past. The past 8 weeks I have been through hell and back but now I am able to see the big picture, which is the light at the end of the tunnel. Not to sound corny, but I am basking in that light. In the past week and a half a switch just flipped and not only do I feel AMAZING, but I feel worlds stronger than I have ever been. I have sure had my share of ups and downs and there were many days when I just wanted to crawl under the covers and give up, but all my perseverance has finally paid off and I couldn't be more grateful, I am truly blessed. The problem is no longer not having energy to do things, it's having too much energy and trying to do too much. At my last GI appointment, my doctor told me he waited to see me back in 6 months. SIX MONTHS. I am used to living in my doctors office, I know everyones name by heart. The fact that I now dont have to go back for half a year is crazy to me, although I am not complaining. I still have to have follow up appointments with the surgeon (who is totally gorgeous by the way!) and with the derm for the shingles (which are gone but still give me some pain). 

So, instead of filling my time with doctors appointments, I have found bigger and better things to do. Firstly, I started back to work. I use the word work lightly because I strongly believe that if you love what you do you wont have to work a day in your life. When you work with babies as I do, missing 2 1/2 months of work is worlds in baby time. When I left my buddy was hardly crawling and now he is a maniac running all over the place. I dont know if I would have had the energy to keep up with him before. 

We have also gotten to spend some time exploring the city, seeing people we haven’t seen in years, and doing things weve wanted to do but just couldn’t. One of the hardest things for me post proctocolectomy was traveling, and in a city like New York that made things very difficult. When getting places takes 45 minutes on a train and you have a condition like crohns, your basically screwed. Because of this we missed out on so many opportunities to do things that we would have liked to do. I for the first time feel like I am in control of my disease instead of it being in control of me. If I want to do something, damn it, im going to do it. No more apps that locate bathrooms or planning everything around meal times (when I had the most issues). I cannot fathom how anyone would be embarrassed of having an ostomy or a bag. It gave me my life back and I am so happy about it I could just shout it at the top of my lungs to everyone I know. I have to restrain myself from telling everyone I meet “Hi I’m Celina, isn’t my ileostomy bag cute?!” However, when I think of people who are embarrassed and hide it, it brings me back down to earth about how although at this point in my life I am in a good place medically, I wasn’t always, and I wont always be. We need a cure. As great as I feel in this moment, Im not an idiot, and I know, chances are, my disease will come back and find me further down the road. With my surgery, after 5 years, 30% of people will develop crohn’s in the small intestine. Each year the number goes up. 80% of crohns patients who have had surgery will require another one. I have had 2 and im fairly confident I will need another one. But that’s ok. It gives me motivation everyday to live my life to the absolute fullest while I still can, and if the disease flares up again, ill be ready and face it head on.

Something River and I both share a love for is Cleveland, and with that, Cleveland sports. We can almost always be found wearing some type of CLE clothing and watching a game. Since Ive started feeling better we have discovered the Browns Backers, which is a group of Cleveland fans living in the city who get together at a bar to watch the games. Basically a little piece of Cleveland heaven right here in New York. I think they have BB in every state and in several different countries, its awesome. Not only do we get to watch the Browns play, but its really nice running into friends we haven’t seen in years. Not to mention, I CAN FINALLY EAT CHICKEN WINGS without pain. Hallelujah. We also went to watch The King’s return to Cleveland. Although we didn’t get the W we wanted, seeing Lebron in a Cavs uniform again gave and continues to give me goosebumps. If your not from Cleveland, you wont get it, but to us, its deep.

Of course, everything cant always go my way. With the many ups ive experienced in the past month, come some downs. For starters my macbook crashed…the day after I deleted all my pictures off of my phone. Losing those memories tears at my heartstrings, but it teaches me to back it up next time. For once, River has been having some health issues. Nothing longterm serious, but stressful and painful none the less. He started complaining of some throat pain last week. At first we thought it was muscular, but over the days we noticed a lump was starting to form and effect his breathing. Long story short we ended up in the ER on Halloween and to both of our shock, they decided to admit him because they couldn’t quite figure out what it was and wanted to give him oral anibiotics. They probably wouldn’t have admitted him if it was anywhere else but his throat, but they wanted to be sure it didn’t cause any major breathing problems. So we spent the weekend in the hospital. He was only there for 48 hours, but I was EXHAUSTED trying to balance work, the dogs, the house, and of course being at the hospital every second I could be. I have no clue how river managed it for months. My hero.

The holidays are coming up, my favorite time of year. I cant wait to celebrate them HEALTHY and surrounded by the people I love. Life is amazing, enjoy every minute of it, try new things, pay it forward, and tell those important to you that you love them every day. 

“In sickness and in health”.

5 simple words that mean so much to me now. When I was a kid growing up I always dreamed about my wedding. I had everything planned out, the flowers, the way I would wear my hair, my first dance song, every little detail. I dreamed about saying these vows to my future husband but never did I imagine how much those 5 words would end up meaning to me. I’m going to brag about my husband tonight, because he deserves it and so so much more for everything he has done for me. I was 15 when we started dating, almost 10 years ago. Looking back now I know just how young we were, but we were already dealing with very grown up issues. River was with me from the very beginning of my disease, which is a lot for anyone to handle. The fact that he was able to stick it out with me and not run in the other direction screaming is truly inspiring to me. I hid how sick I was for a long time, I was in denial and kept it from even my parents for years. Everyone thought I had an eating disorder, including myself at times. I didn’t understand what was happening to my body and I was too scared to get help. River held my hand throughout the entire thing and encouraged me to seek treatment. For that I am forever grateful to him, but our journey didn’t end there. Throughout the years River has been around for 9 colonoscopies, 1 small bowel resection, 1 blockage procedure, 1 proctocolectomy, about 50 humira shots, numerous infusions, and hundreds of doctors appointments. “In sickness”. Looking back now I realize that our entire relationship has been in sickness. He really meant those vows. Im not throwing a pity party, aside from the “sickness” part we have lived a very blessed life together traveling to 3 different countries and living in 3 different cities together. Our adventures always seemed to have a black cloud over them however. My crohns was always in the background waiting to pop up and ruin the day. As a kid I never could comprehend how important those 5 words really are. I hope many of you never have to deal with the “in sickness” part, but if you do, I hope you have a “River” holding your hand through it all. My rock. Looking forward, I am beyond words excited to live the “in health” part.  For the first time, I am in remission and I have so many plans for myself that I was never able to experience before.

Never take “in health” for granted.

C