Finding My Breath 🧘🏼‍♀️

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.

It’s not ok…and that’s ok.

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.