I’ve been diagnosed with cervical dystonia, a neurological movement disorder, since 2010. As an extremely disabling condition with sometimes relentless chronic pain, it’s had a tremendous impact on just about every area of my life including limiting my driving abilities, my capacity to work and to be able to take my son with special needs, to some of the extracurricular things I’d like to see him be able to participate in.
“As an extremely disabling condition with sometimes relentless chronic pain, it’s had a tremendous impact on just about every area of my life.”
I’ve been diagnosed with Irritable Bowel Syndrome for years and figured that every quirky GI symptom I’ve had was just the IBS acting up. But for the past few months the more distressing symptoms were intensifying and I was noting more blood in the toilet when I went to the bathroom.
As a special needs mom of three, one of whom is a heart patient, I’m pretty good at doing research. So naturally, I started Googling “Inflammatory Bowel Disease” and started to wonder if that was what was going on and scaring the daylights out of myself in the process.
Finally, I went to the gastro in January, who ordered a colonoscopy. I procrastinated about getting that procedure done for a few months and finally got that done in April of this year.
For some reason the prep didn’t seem to be going as well as previous times. When I came out of the procedure, the doctor told me that the prep was indeed poor, and that I had colitis but they’d have to do biopsies in order to confirm what type it was. The doctor didn’t think anything major like cancer was going on.
Afterwards we stopped for breakfast at one of our favorite places just like we’d done in the past. I ordered some food, but then I began feeling horribly nauseous and couldn’t eat. The nausea became overwhelming and then I lost consciousness in the restaurant in front of my husband. A retired law enforcement officer, he started trying to give me mouth to mouth right away. Luckily there were some medical personnel from the local hospital there too and they called an ambulance.
“I lost consciousness in the restaurant in front of my husband […] he started trying to give me mouth to mouth right away.”
I spent several hours on ER having vitals checked as well as an EKG. I was super nauseous for several hours and couldn’t go to the bathroom by myself for awhile. My vitals all checked out as normal, but every time I tried to stand up the nausea came back. They gave me some meds or that and when it finally seemed to be under control, I went home to rest.
The doctor told me that it didn’t matter what I ate, but again… special needs mom that I am, I question standard medical advice. Also, I’m pretty holistically-minded about everything. I knew about the Gaps diet and was able to source a few things immediately. Something about being told my colon was “oozing” was very motivating to get started right away!
I’ve already begun to see some slow improvement but I understand that this is a major lifestyle change. I’d already made lots of changes over the last couple of years including a 40 pound weight loss and a food plan that was comfortable for me. But now I’m having to make more changes. I miss my morning oatmeal, coffee, and other creature comforts that help to keep me sane.
“30+ years of sobriety, being a special needs mom and living with another chronic illness have helped me to develop a self care arsenal that keeps me grounded through anything that life throws at me.”
Checking in with my mindset about everything, although I complain about the food restrictions on the Gaps diet, I think I’ve handled it all relatively well. 30+ years of sobriety, being a special needs mom and living with another chronic illness have helped me to develop a self care arsenal that keeps me grounded through anything that life throws at me. For me this looks like daily devotions, meditation, yoga, and writing. A little dark humor and sarcasm goes a long way too. Unfortunately that list also used to include a good cup of coffee, but I guess that’s out for now until I’m more stable.
I’ve learned that my life’s journey is a marathon, not a sprint. Sometimes there’s going to be awful days. Situations that I’m totally powerless over. At times like these it’s perfectly okay to lay low and focus on what I need to.
At this point I haven’t had the follow up with the doctor or got the lab results back. Honestly, I am a little anxious about it after doing some research and seeing the the possible treatment options are, how invasive they might be, how much is this going to cost and how cooperative will my insurance company be?
“I’m being proactive about what I have to do, taking it one day at a time and giving myself lots of grace to get through this.”
But believe it or not, it isn’t consuming me like it might have at one time. I stay busy with my blog, my dogs and my self-care practices in order to stay grounded. I’m being proactive about what I have to do, taking it one day at a time and giving myself lots of grace to get through this.
Marya Mesa is a special needs mother who writes at www.ChronicMomLife.com about chronically sober living with faith, intention, & self care.