Tuesday, Sept 1st, 2020 has forever changed my life. I received a new diagnosis. As I was waking up from anesthesia, my GI came in to speak with me. I can’t seem to stop replaying the exact words she said— “ You are very sick”—- those four words, hit me like a ton of bricks. My disease has progressed to Pancolitis. Instantly, tears rolled down my face along with an immense amount of fear and anger.
It has been a whirlwind of emotions, grieving/ coping my body, a body that will never be the same inside again.
Having to wrap my stubborn head around the fact that I will need infusions to work towards remission. For someone who has always been terrified of hospitals, this was not exciting news. Progressing into severe Pancolitis has forever changed my world.
There’s so much more to this disease, by the look of us— you’d never know anything was wrong. I believe that is yet another challenge. A mixture of blaming oneself for being this sick, “if only I didn’t stress over this or that”— “If only I didn’t eat that”. When your body is literally attacking itself each and every day, it’s beyond exhausting.
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This never-ending flare and I’ll spare you the graphic details, will one day remind me of how strong I’ve become. It is not only physically taxing, it is just as much mentally exhausting. With the depression that comes along, side effects from all the medications, blood, breakouts, brain fog, lack of sleep, frequent RUNS to the bathroom, swollen gut, losing weight, constant excruciating pain, joint pain, feeling isolated and alone, heat-pad burns, fevers & tears. Being terrified of being far away from a bathroom. Not being able to sit up without hurting. It makes you feel like you’ve aged so so much, in no time at all.
I miss my relationship with food, I miss being able to socialize with food around, I miss living a normal life, most of all—-I miss feeling like a human being.
I hope if you are reading this and it resonates with you, knowing that you are going through the same thing— you are NOT alone! I pray this will bring you some comfort and peace. We have to stick together! This is my journey.
