Ticking Time Bomb
June 16, 2019 15 CommentsCategory: MS, My Story
Tags: C Diff Colitis, Gut Bacteria, Gut Health, MS, multiple sclerosis
As I lay here awake in the middle of the night, I can’t help but feel like I’m a ticking time bomb that’s about to explode… Like at any second something horrible is going to happen and there’s nothing I’ll be able to do to stop it.
After my latest MRI, my neurologist called me on Friday to tell me that I had 6 new lesions on my brain. SIX. He said at least a few were active – aka symptomatic. Needless to say, he’s quite concerned.
It takes one lesion to lose your eye sight, to experience vertigo, slurred speech, trouble walking, aches and pain… And I got six new ones in a matter of months.
How does this happen?
Well, it’s not surprising to me that my MS has suffered after the last few months I’ve had. No one likes to talk about the bad stuff – we just had a beautiful baby boy after all! – but I have had, for lack of a better word, a pretty shitty 10 weeks since his birth.
Thankfully, and most importantly, Jack is healthy and growing perfectly but I haven’t been myself. The health complications I’ve experienced over the last two months feel comical at this point as one thing after another keeps happening. It all started with a horrible allergic reaction post-delivery that spread throughout my body thanks to my MS steroids, then my C-section incision got infected, which ultimately led to a gut bacteria infection called C-Diff Colitis that is so severe that I’ve been on antibiotics every day since bringing Jack home from the hospital. The infection is still not cured. We now think there is a correlation between the progression of my MS and this gut bacteria infection that will not go away.
Without going into too much detail, I will just say that it has sucked dealing with these health problems. Totally and completely sucked. But at the same time, I now have exactly what I always wanted – two healthy children. How lucky am I? How can I complain?
I keep telling myself that this is just a difficult time and it’ll pass. That I’ll get stronger, my body will recover and we will be left with our wonderful family. But what if something bigger happens? What if this bomb explodes?
I can’t imagine a world where MS takes over my body and leaves me incapable of being my own advocate.
You see, that’s my thing. I take care of myself and my health. I manage this disease every day and I think I’ve done a pretty damn good job of doing it. But MS is bigger than me. I am realizing this. I can not control what it’ll do to me physically and that scares the hell out of me. With two young children at home, I cannot afford to not be okay. To not be able to take care of them every day and to manage this life that we live.
Luckily I have support and I know that but I don’t want to rely on other people to do my job. I want to be with my kids every day – taking Chloe to school, comforting Jack when he cries, putting them both to bed at night… That’s my role. Neurological problems are scary and they can take the ability to do the most basic things away from you, and that scares the hell out of me.
Where do we go from here? I’m heading back to get another MRI with contrast next week to see if they can pin point exactly where the lesions are to better evaluate them and how we treat this. I also need to meet with my neurologist and an infectious disease specialist to figure out next steps.. we need a plan. I need a cure.
I am up to 25 lesions in my brain and writing that alone makes me terrified. I’m 33 years old. What will 25 lesions do to me over the next 33 years? One step at a time, I guess.