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.
June 16, 2019 at 5:13 pm
You are right, honey, this sucks. I thank God that you have the courage, smarts and drive to manage this. But it does suck.
June 16, 2019 at 5:33 pm
I admire you, Angie. You are systematic and able to approach each problem with a plan. I hate making appointments and going to them. You will get through this obstacle just as you have every other one. 🙏🏽❤️
June 16, 2019 at 5:37 pm
I feel your concerns. Every time I think I have a new symptom I think things will get worse. Stay strong and hopefully it will “even” out. Mine thankfully has but all in all it sucks.
June 16, 2019 at 5:56 pm
You will get through this just like you always do. Just another bump in the road. Sending good thoughts your way. So glad you’re in the best hands at Rush.
June 16, 2019 at 6:25 pm
MS is scary! No matter how hard we fight, it seems to have a way of reminding us that it’s there and can take over. You my friend are a fighter and inspiration! Take this set back one day at a time. I am praying for you. What MS medications are you on? Please know that you are not alone in this fight!
June 16, 2019 at 6:36 pm
At least those new lesions are not symptomatic. Think about it like this- you have had 20 others with little effect on your daily life. This time they seem to be in places where the damage has not effected you yet. The tysabri may need longer to kick back in since you are on all of these other meds for the infection. If that’s the case you know the cause was actually a result of the infection. You have your little family now and can move towards healing from the effects of pregnancy.
June 16, 2019 at 7:35 pm
I can’t imagine what you are going through. You are in my prayers, for hope, healing, slowing down the progression, your family.
June 16, 2019 at 8:31 pm
You are absolutely so amazing and so inspiring to me! As an MS warrior myself, I always look to you for inspiration and support and that’s exactly what you give me. I always seem to resonate with your thoughts and your views.
I am literally going through the same thing right now, well almost the same thing. I too had my MRI and have three new brain lesions leaving my doctor concerned. I think it all boils down to the stress. You have been through a lot of stress the past couple of months.
I am literally going through the same thing right now, well almost the same thing. I too had my MRI and have three new brain lesions leaving my doctor concerned. I think it all boils down to stress. You have been through a lot of stress the past couple of months.
Just remember we have MS, but MS does not have us! 💪🏻😘❤️
June 16, 2019 at 9:02 pm
I’m so sorry about your news. My first neurologist told me he had patients that had a lot of lesions and did amazingly well while others had few lesions with many symptoms and disability.
MS might be bigger than us but our God is much bigger than MS. I’ve had my challenges and this disease is never easy but Jesus always helps me. I’ll keep you in my prayers 💗 for healing. thank you for all you do for others fighting this disease.
June 16, 2019 at 9:13 pm
I am so sorry to hear this. You and your body have been through enough. I agree with the person who posted above, that you may have these new lesions but thankfully you have not felt them physically or mentally, and that is definitely a blessing. The human body is amazing of what it can endure and bounce back from! One day at a time. Sending hugs and keeping you in my prayers.
June 16, 2019 at 10:09 pm
I am so sorry for the news. I am newly diagnosed and have not had the strength to reach out to others with MS yet…but your story inspires me and your posts help so much! You know it’s a scary disease when people try to help you by saying, “anything can happen to anyone at anytime.” You are strong, positive, and have one amazing family for motivation….. you got this!! Thank you for sharing your story it is so inspiring and gives me and so many others hope!
June 16, 2019 at 10:24 pm
Thats hell scary…But i’m amazed to see the courage that you have.Be positive and everything will turn out be good,infact amazing for you..God bless 🤗.
June 17, 2019 at 4:59 am
This news definitely sucks Angie but if anyone is equipped to find the best next steps and stay strong it is you. You continue to amaze me being such a wonderful mom and wife … an example for many while dealing with so much personally. Thanks for all the inspiration you continue to share and stay strong ❤️
June 17, 2019 at 4:56 pm
Angie- I’m so sorry you’re going through this. My MS worries me of course, but it has an even nastier sting when I think about my baby and all the what ifs.
I’m holding space for you and sending you love and light. I know you’ll get through this.
June 17, 2019 at 7:11 pm
I was diagnosed almost 3 years ago and I look forward to your posts every single day. You have inspired me so much more than you can imagine, your strength and determination taking care of your family and working full time is remarkable. I come home after a long day of working outside of my home and I look forward to my few moments relaxing watching your inspiring updates before I get back up to complete all the things that need done at home. Stay strong, you’ve got this:-)