Sunday, March 22, 2015

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

Thursday, March 5, 2015

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


Hugs, C