It’s hard to believe it’s been six months since my last surgery. I don’t know six months ago I was so full of hope that after the pain of recovery all my issues would go away and I would miraculously be fine and back to my old self. Instead today I woke up after a night of tossing and turning and running to the bathroom, tired, cranky and a little sad (ok really sad).
Progress has been slow and hard. I still try to stay positive but it just seems like my colon wants to stay inflamed. It’s the normal state of being really…pain, discomfort, exhausted. I’ve been trying to get back to a normal life going to events and spending time with family and friends, but it’s difficult. Every attempt at normalcy just lands me even worse off then I was feeling before.
Is it bad that I rather suffer through excruciating pain because the thought of going back to the emergency room actually gives me PTSD?
The last month has been full of ups and downs, changes in my life, and my health just isn’t cooperating. I’m tired of being tired. It’s been difficult because lately I can’t even talk about the pain because it just makes me feel so hopeless.
Hopefully things are bit better and the next post is a lot more upbeat. The struggle is real a lot realer than I even admit to myself at times. I really need a breakthrough.
This is what Chronic Illness looks like. I’m reblogging this post because it is often difficult to be so sick and “not look sick.” I have my good days and bad days,it can be a struggle but I try to remain as positive as I can. If I say I’m tired or can’t make it out to something it’s not because I don’t want to, it’s because I physically can’t. I don’t want anyone to feel sorry for me, I am grateful for all of the people in my life and the opportunities that I have been fortunate enough to have, but sometimes we all need a bit of understanding.
I’m enjoying the nice weather in DC at the National Police Memorial.
This is the happiest I’ve been in the last ten months of my life. Little background I was fresh off of surgery and home for a day when I bought the tickets to THE MAIN EVENT. Sadly my cousin Martine is a resident in NYC and she couldn’t make it. My cousins and I have loved NKOTB since we were little girls. I remember calling my dad in 2008 when these Boston girls saw them for the first time and said it was the happiest day of our lives.
My cousins and I living the dream at TD Bank Garden in 2008! Dreams come true!
I was asked several times today if I was excited about the concert tonight and I was like I’m busy at work. Anyone that knows me knows that I get excited about watching paint dry but being sick has made me a lot less of myself even if I didn’t realize it. Seriously the last ten months of being sick, in and out of hospitals, plus surgeries has been horrible. I never admit just how hard it has been, until… tonight.
My cousin Sarina and I at NKOTB in DC
The Main Event brought me back to simpler times, when my biggest concern was if I would marry Joey, Donnie, or Jordan. Life has been a lot harder the last few years, but I look back fondly on when my cousins and I sat and waited for Joey at Tower Records at the South Shore Plaza for him to sign our CD, or when we walked past Jordan’s house a billion times, or when I grabbed Mark’s butt because I’m bold. Hell a few weeks ago post surgery at my friend Anthony’s wedding The Right Stuff Came on and I split my surgical incision open doing the “New Kids Dance.” For a few hours, I forgot I was sick and living in doctors offices, constantly fatigued.
All I know is, if only for one night, I’m hanging tough!
I wanted to share this post from Finding my Miracle because it truly explains what it feels like at times to have an “invisible illness.” It perfectly describes the struggles and emotions that I often feel and I’m sure others do as well.
It’s not a secret that people with chronic and invisible illnesses get really tired of hearing they look good. You might think this irritation is irrational and that’s okay, because six years ago I probably would have felt the same way. I mean really, who doesn’t like to get a compliment?
But do you know what we do when people tell us that we look good? Most of the time we probably force a smile, say thank you, and then go have a conversation with a fellow spoonie about how annoyed we actually were.
You look good…you don’t look sick…and various other forms of that sentiment are on every “things not to say to someone with a chronic illness” list. So it’s not a secret that we don’t like to hear it. The secret is why.
The simple answer is that just because we look good doesn’t mean we feel…
I really just don’t know where to start, so I guess I’ll start from the beginning. I remember it so clearly, I was going to work at the State House in Boston one summer and my cousin was driving my old Kia Spectra( the kind that was practically made of aluminum foil, before Kia became the brand they are today). I had her pullover so that I could throw up. I didn’t know what was wrong, so I called my boss to let him know that I wouldn’t be coming to work. Getting back home, I wasn’t feeling any better and continued vomiting, it was odd since I hadn’t been drinking the night before and while working and being a full time law student I still managed to find quite some time to imbibe. I chocked it up to post-nasal drip making me nauseous but days went by and it didn’t go away. Little did I know that was the beginning of all of my doctor’s appointments.
I went to my primary care doctor. After my blood work came back normal, he told me it was just stress from being in law school and working full time. Although, it was a lot of work I thrived in it, it wasn’t as bad as it seemed, but my stomach was still hurting. I was nauseous and vomiting all the time and was having diarrhea on a regular basis – clearly, something was wrong. I went to several other doctors in Boston at some of the most reknown hospitals in the world but it was tough to be taken seriously at 24 when stool studies and blood work kept coming back normal. I eventually started feeling better and didn’t think anything of it, but knowing what I know now that was probably my first diverticulitis attack but it sure wouldn’t be my last.
It wasn’t until the Fall of 2009 when I landed in the ER because I was vomiting blood that I would soon learn that I had diverticulitis. Once I got to the ER, I was told I had alcohol poisoning… funny, since I hadn’t been drinking. It was the first of many times that I wouldn’t be taken seriously at the hospital because I never look sick. To make a long story short, my CT showed that I had diverticulitis and I was in the hospital for a few days. The hospital referred me to a GI doctor who later told me, after my first colonoscopy, that I had diverticula throughout my colon. After numerous attacks, courses of antibiotics, and a high fiber diet, nothing helped and I had a colon resection in 2011.
After recovering from the resection that came along with an abscess and some weight loss (which I didn’t mind) I finally started to feel better. In time I forgot all about it, became a little less diligent about always eating the right things but that all changed in September of 2014. I ended up in the ER once again, being told I would need emergency surgery. Once the surgeons changed their minds and sent me home, I was told to see a surgeon about a presacral cyst. I saw a surgeon that I had seen back in 2012 when I had to have the same cyst drained. I was placed on antibiotics and things didn’t get better. I had a colonoscopy later that month, but the doctor couldn’t finish because my colon was so inflamed. I was sent home but had some of the worst pain I had ever experienced in my life, and again, landed in the hospital for another week.
All of that led to my surgery in January 2015 to remove the cyst that had grown so big that it was pressing against my colon. After surgery, I immediately felt relief from my stomach/colon pains. Although I was in a ton of post-surgery pain, I felt relieved, alas a clear chance at a “normal” life. That relief would be short-lived.
Leading me to today, where I’m on another course of antibiotics for either c.diff or a low grade diverticulitis attack (just annoying enough to make you feel like crap but not enough to be in the hospital), trying to figure out how to make life easier, not only for myself but for others dealing with GI issues. The thing about GI problems is that they are “gross” and no one wants to talk about them because they are “embarrassing.” I’m still trying to figure out how to live life to the fullest with my chronic GI issues, while being both healthy and happy. I’m hoping by sharing my story that others can find someone to relate to. I look forward to hearing from others about their experiences and sharing recipes, fitness and nutrition tips, and all of us living life with guts and glory!