Ah! It’s been so long since I’ve blogged and whenever I feel like it’s been too long, I get that nagging guilt feeling telling me, “You have to write, you have to let people know how you’re doing!”
But, the reason I haven’t sat down to write in a while is a good one! Like I told a young girl who wrote me an email asking what my life has been like with my jpouch (who I took a long time to respond to, sorry!) I’ve been too busy to blog, answer emails, comments, tweets or facebook posts. I’ve been busy-LIVING.
For a few years the only thing you would hear from me is updates on my health status. And as I move further and further away from my last hospital stay, I realize how important these blog posts and answers to emails are to those who are still struggling with their chronic illness. A positive outlook and a role model to look to was always something that I had relied on while I was sick, going through surgeries or jpouch struggles. I STILL lean on positive influences or try to seek helpful advice for when I’m having a bad day. Because those small windows of positivity can help so many, and that is ALWAYS what my mission has been. To help those who may be too sick or too scared to help themselves, just like I was when I was first diagnosed, or when I found out I had to have an ostomy.
I’m still living in and loving downtown Cleveland. I was just thinking the other day that this would be around the same time last year that I moved up here and was working at a job that I despised more than my colon. I always try to remember that I am, in fact, thankful for that job, because like one of my best friends always reminds me, people, places and things happen in your life to serve purpose. That job served it’s purpose. It brought me to where I am today, and where I am today is definitely where I want to be!
My health has been amazing. My numbers continue to look NORMAL-even my iron and blood counts! That is such a great push in the right direction for me. Almost like my body is telling me, “Hey, you’re doing a pretty awesome job, please keep it up.”
I’m trying! I’m human. I eat bad things, I stress out and am a control freak (that is something that CANNOT be surgically fixed, unfortunately). I have a new job that I love that I want to be really good at. That’s how I’ve always been. I remember sitting in the hospital after one of my first stays crying because I had to quit my job. Working has always been like an addiction to me. When I love something, anything, I love it hard.
But, unlike others, I have more of an in touch relationship with my body. I can tell when I’m getting burnt out. Symptoms flare-I get headaches (from dehydration and stress I would assume) exhaustion, nausea, the norm for me. Nothing I don’t know how to handle. What I continue to work on is how I’m handling those symptoms. For the average person, when their body is telling them to stop, they might take it and say something along the lines of, “Oh well, I can sleep when I’m dead.”
Unfortunately, the luxury of saying that for me went away upon my diagnosis. I used to live and breathe by that statement. Work hours that were unreal and then go out with my friends and stay up until all hours of the night on top of it and not think anything about it. Now I have to think about it constantly. Going through this has not only taught me that taking care of your body should be the #1 priority on everyone’s list, it goes to being grateful for what you do have.
I promise not a day goes by right now that I don’t stop to think how grateful I am. I have constant reminders of how blessed I should feel showing up on all of my social media feeds (which is another addiction for me).
Just before I sat down to write this, I saw a young man on my Facebook news feed who was sharing his ostomy in support of raising colon cancer awareness. I love it. Not having lost my colon to cancer-pretty awesome. Even though ulcerative colitis is not and was not much better. I can guarantee that I still suffered just as much, felt just as much pain and just as much confusion and fear as he did when he found out he had to wear his ostomy.
His article spoke on the fact that he was really afraid and naïve. That he was almost ashamed of his disease because of the stigmas that came with having colon cancer. The same come with Crohn’s Disease and ulcerative colitis. Which is another reason why my proudly advocating, blogging, tweeting, posting and talking on the subjects of chronic bowel diseases, ostomies, jpouches and colon cancer will NEVER stop. No matter how busy I am.
I know many of you are probably wondering what I am doing, what I’m eating, where I’m working, how many hours I work in a day, how much sleep I’m getting at night, if my jpouch is affecting my new job, if I told my co-workers about my journey, etc. (Those are the most immediate questions that I know I would want to know if I was me 2 years ago).
I worked my ass off interviewing and finding the perfect job. I am now working marketing at a restaurant and concert venue in downtown Cleveland. My new co-workers are so fun and amazing and, yes, most of them know what I’ve been through. They’ve all been supportive, interested and very positive. I’ve never been one to hide what I’ve gone through and neither should you. Always be proud of what has made you, you. You never know who you can help.
My eating habits are fluctuating. Today with breakfast I had a cupcake (DO NOT do this if you are within your first year of jpouch-dom). I had a really good excuse, too. I have been doing well with my lean protein intake, which is important and I can always tell when I haven’t been doing a good job of that. Usually a plain chicken breast with some rice will suffice for a really great meal for me. I always throw a cookie in at the end, because I’ve built up the ability to do that. G2 is still a big part of my day as well. If I don’t drink G2 like I should, I can tell. I get sick, headaches, stomach aches and my body craves it. You probably will only know that feeling if you have an ostomy or jpouch. Same with salt. Sometimes I swear I crave salt so bad I want to pour a salt shaker in my mouth; which I’ve never done, promise!
I have been working long hours but that is only because I feel like I can. I told my dad on text today that yes, I may have over done my hours at work today, but I feel really great. I know I can make up for it over the weekend. Again, this is not advice to the new jpouchers. If you are in the middle of your surgery series or have a jpouch that is fairly new (anything under a year) you should not be working full time, stressful hours if possible. I made that mistake last year and I paid for it. In hospital stays, iron transfusions and maintenance medications (even steroids again). It also helps that I like this job and liking your job is half the attitude battle. If your mind is happy, so is your body. Plus I am making sure that I am getting at least 8 hours of sleep every night.
I’ve taken a break from the gym while I get used to my new work hours. There is no reason for me to overextend any extra energy I might have on killing myself at the gym. I know I’ll get back there again, but I need to take my time adjusting to new hours. I’m thinking something more relaxing like yoga or Pilates might be a better route for me to start taking. Those are the adjustments that I’m talking about. You have to recognize that you cannot keep up with the average person anymore. And you have to be ok with that.
I hope this blog update helps answers some questions that I may have gotten over email that I hadn’t gotten a chance to get to! I still answer emails, tweets, and blog comments, I just might not be as quick as I was. I’m a little busy at the moment
You will get there. You will have a normal life. What’s important to remember is that everyone’s normal is different. You have to do what works for you. What works for me right now is laying on my heating pad and sleeping until 1 p.m. tomorrow! Happy Easter, everyone!