It can be extremely hard and overwhelming to talk about my story. I never wanted to be inauthentic with the reality of my situation, but it’s a fine line between the truth and complaining. People who are sick hate to complain about it. We don’t enjoy feeling like the burden, nor do we enjoy defending our illness and limitations. Explaining to someone new in your life all that IBD encompasses can be extremely challenging. The question for me is how do I tell people without scaring them into thinking at any moment I could just die. It’s the reality and challenge I feel constantly. How do I let them know how significantly this has impacted my life without making them feel some kind of way or pity?
As of lately, finding my breath through all the anxiety and daily stress has been challenging at times. I started a yoga journey back in January. Per my therapist’s suggestion, it wasn’t to “get fit” or to “get in shape” but to bring a calming effect to my life. As some may know, or may not, I was 70 pounds when I got out of the hospital in July of 2018. I had no muscle tone and was using a walker to get around my house. Although it was devastating in its own way, I knew (because I had been there before) that time heals everything-and it would only be a matter of time before I regained the weight I had lost. As the months passed, from July to January, I was eating everything and anything in an attempt to gain back the weight. It took time, but by January I felt as though I could do some slight exercise. I wasn’t ready to run sprints, as during my last hospitalization I had a tear in my ACL. The tear was due to the hyperextension of my left leg while on the paralytics. While my body was at rest and I was on ECMO, I had very heavy medical boots placed on my feet to keep me from getting “drop foot”…all the while creating extreme pain and additional issues in my left knee when I was taken off of the medical sedation. I worked with physical therapy both in the hospital and when I got home and like everything else in my life, it was just going to take time to heal.
Several people had suggested Yoga as a way to release stress. Currently I’m going through personal life changes and challenges which prompted me to try Yoga at all. When I had the bag, Yoga was never an option. Due to the placement of the bag and the constant skin irritation I endured, bending in poses would have only prompted a leak. So, when people were suggesting Yoga I thought, if nothing else I’m going to try it because it’s something I could have never done with the bag. So, I walked into the local Yoga studio and signed up-with the strict intention of relaxation.
After my first hot yoga class, I fell in love with the feeling. My lungs, which had been severely compromised felt better after being in the heat for 60 minutes-I was impressed. The motions were slow, and the modifications were helpful and I felt like I was sweating out all the toxins from my body. I felt cleansed after each hot yoga session. The best part was I didn’t have to talk, I could go in and do yoga and not think about anything but the pose I was being instructed to do. For weeks I would go to hot Yoga, it was my escape from so many things that were transpiring in my life. I was learning to breathe through the discomfort and I was able to reflect on what I was grateful for. After every Yoga practice there is a moment where we’re asked to reflect on what we are grateful for, in my head I am always grateful for being alive and present.
The hardest thing in the world is to learn to accept that you can’t change or control what happens to you. Today, I’ve gained some good news–and although it’s not something I’m totally comfortable sharing with everyone today, I hope to eventually be able to share all that I’ve learned through the process of being sick. I’ve learned that I have to be my best advocate for myself. If I don’t think something is ok, I say so-especially when it comes to my medical care. If I think I should have an IV in my arm versus my hand-I will say so. Where as, in the beginning, I was more timid and unable to voice my thoughts for fear I wasn’t right. When it comes to your body and your life-whatever you think is best for you -is. It took me many surgeries and years to come to this conclusion.
The Stress of living with this illness can be almost unbearable at times-I’ve said this before…I have to concentrate to concentrate. It’s hard, this disease is one of the worst situations I’ve ever had to deal with. There are days when I feel like I can do this, and then there are days when I know I can’t do it.
Lately, I’m struggling to keep weight on. (I know, I know…poor me.) But it’s not fun to have your clothes hang off of you–espeically when you like the clothes you own. I’ve never known the struggle of being “thin” until I got sick. Then I learned quickly, the grass isn’t always greener on the other side. Even the smallest ostomy belt doesn’t fit because it’s pulled as tight as it will go-but it’s still not tight enough. The struggle is real, and my real point is–the struggle is real for everyone. Everyone has something, or many things they don’t like about themselves. I’ve become extremely insecure with my body since gaining a bag. I know most ostomates are proud and wear their bag as a symbolic badge for courage–and I commend every one of you who see it as a strength. I unfortunately, see it as my weakness. I’m not comfortable with it and it constantly feels foreign to me. I’m not writing this as a “poor me” blog-but I’m writing this for everyone else who also hates their bag today. It’s ok to hate it, and it’s ok to love it–and it’s even ok to have a love/hate relationship with it. The bag saved us, but it also replaces a piece of us that could no longer manage to survivie in our bodies. In a way, every day I mourn the loss of my colon and the representation of what it meant for me to have it. Normalcy. Having a colon is “normal”-so it would only make sense that having that creates a sense of normalcy. On the flip side, I feel this is also why so many of us are desperate to pop any drug into our mouths that may even offer a slight chance of hope for normalcy. The hardest thing is rembering and reminding oursleves everyday that we are a version of normal–our normal-but it’s taken me years to convince myself of this and I’m still working on it.
Along the way, through anal manometry testing, dilations, pokes and probes I’ve learned that no matter what curve ball life throws-I can do it. I’ve had procedures that would make you squeemish at the thought, and I’ve been so close to death’s door that almost anything else seems trivial. Yet somhow, I push through. Sometimes it’s hour by hour and sometimes it’s day by day-but I keep pushing through. I’m setting goals and achieving them, and I’m remembering the important things about life once again. Taking it one bag at a time, we get by with a little help from our ostomies.
You feel like no one understands, and the few that do won’t make you explain. It has been 73 days since my last blog. A lot has happened, a lot has changed. I’ve never been one to put my entire life on Facebook or social media-and I only do it now to help and educate others. No matter how much I explain my situation there’s always so many layers of confusion for my friends and family. My best friends know, don’t ask me “how are you”…if it’s bad..I’ll tell you-other than that we need to discuss something else. I had my last surgery (for now) a month ago. I’ve learned my strengths and I’ve learned my weaknesses. I’ve literally had moments where I don’t think things will ever get better…and I’ve experienced a loss of apetite that no Italian should ever have to endure. I become so frustrated that I feel like lashing out-but I don’t. I’ve become silent these last few months because I wanted to be the positive “it’s ok” voice that everyone around me needs to hear. It’s not ok, it’s very very hard to be sick. Any kind of sick. I’ve also never wanted anyone to feel bad for me-in my opinion I feel bad enough…no one else needs to feel any bit of how I do. I often think about blogging this or that-and I know what I should say and what I actually feel couldn’t (at times) be any more opposite. I also feel like at this point, people are wondering…is she better…or is she still sick. No one asks me, but I can only imagine the thoughts. If I post a picture…a picture captures a moment in time. In that moment, I might be ok-in the next…I might not. It’s been 73 days since I’ve posted my last blog…I’m trying my absolute best to get back to where I was mentally, physically and emotionally. Everyone is dealing with something…everyone…and for that reason I don’t feel special for my feelings. All I ask is that when anyone sees me out-you don’t say “how are you”-my answer will always be hesitant and I will probably lie to you. When I’m great, you will know…but until I’m back to me…instead I’ll just be this. I’m frozen for now- waiting, praying and hoping for a day when the pain mentally, physically and emotionally will cease. It’s not ok…but it’s ok.
They say a picture is worth a thousand words. I tried my best to write a blog entry but was unsuccessful (multiple times). You see when I share my story…it sometimes causes me mental distress to do it. I relive the situations so others understand and become aware that this can happen to anyone at any time. I also do it to avoid those awkward conversations that could frankly take hours for me to really tell you how I am or how I feel. Today is the one year anniversary of my snail and although I get mad at it often…and hate the pain it causes me on a daily basis it has saved my life more than once. I couldn’t write a long blog this time..because my tears got in the way. I usually try to only post positive, upbeat and heartfelt blog posts. However, the truth is…I’m sad, mad, grateful, and beyond blessed today. Thank you to all my friends and family who help remind me everyday that I’m still me. I’m a wife, a daughter, a granddaughter, a sister, a cousin, a niece, a daughter-in-law, a best friend, a friend, and someday I hope to be an inspiration to others.