Self-Advocacy, Colonoscopy Results, and Manic Muffins - Journal Entry No. 6
Summary
I decided to share a bit about my recent adventures with Crohn's disease. I had a scope done recently and, surprise! Mild inflammation in multiple spots. Yeah, it's a bit frustrating, but I'm choosing to stay hopeful. After all, it’s not severe, and that's a win!
Advocating for myself has been a huge part of this journey. After a massive bleed, I called my doctor and said, “Hey, I think I need an iron infusion.” Turns out, my levels were low enough to get it done quickly. Then, I pushed for a scope to understand what was going on.
Living with chronic illness can be tough, but I choose hope and gratitude over frustration. It's better for my mental health, and it keeps me going. And remember, if your doctor isn’t giving you what you need, don't hesitate to get a second opinion. Your health matters!
Hope this little update brings some encouragement your way. Keep advocating for yourself and stay hopeful!
Oh, and I talk about my muffin recipe so I decided it was time to add it to my blog. Check it out here: www.invisiblecondition.com/blog/tims-manic-berry-muffins
Transcript
Hey, Tim here, and as most of you know, I live with Crohn's disease. I had a scope recently and the results show that there is mild inflammation in my guts, not just in one spot but in multiple spots, and while it can be frustrating and it is a little frustrating, I'm choosing to see this as being hopeful.
It is a little frustrating, I'm choosing to see this as being hopeful. If somebody asked me if I'm frustrated and I'm not going to let myself go there, I know that there's still no cure for Crohn's disease yet. I'm hopeful that changing up a few things in my lifestyle and continuing on the medication that you know it will take effect and we'll see where it goes from there, that it will take effect and we'll see where it goes from there. And, as a friend said to me, at least it's not severe.
So I'm kind of leaning into that right now. It's not severe. When I was in the peak of my flare, I was prescribed an extremely high dose of steroids, which just was a disaster in my life. The only good thing out of being on steroids was developing a recipe that I now call manic muffins, and I still need to put it up on the website. I would wake up at two or three in the morning and just bake to the point where my kids and my wife said, please, no more baking.
But I'm not there, and so that's why I'm leaning into hope Now. I wanted to share a little bit about how I even got to have a scope, because it took a bit of advocating for myself. A few weeks ago, I called up my doctor after experiencing a massive bleed, and so I said, hey, this is what's going on, and he said well, it could be a number of things. And I said but it could also be Crohn's, we don't know that. I also explained to him that I have no energy.
I'm not just tired, I am beyond fatigued. I am beyond fatigued to the point where I need naps in the afternoon just to get through the day. So I asked him like, what do we do? What are the options here? And we came to the conclusion that I need an iron infusion, and I even asked for that. I said, hey, what's it going to take for me to get an iron infusion? And he pulled up my blood work and said well, actually you're lower than the acceptable level, so let's get you in for that.
And thankful for our cancellation at the hospital because they got me in very, very quickly for that. But I also advocated for getting a scope done. My last scope was about eight months ago and so I understand they try not to do them super often and I could see why it's not fun. It's not like going to a carnival or anything like that, drinking that nasty cleansing liquid just for a camera to go up the backside. It's not fun. But I wanted that scope, I wanted to know what was going on. So I asked, hey, what would it look like if we did a scope? And he said, yeah, let's get one in there, let's get one done. And so we did. And the clinic I use, where my doctor is, they have just a phenomenal service and a holistic approach to medicine.
They even have a scope clinic right inside where his office is or not in the office, but close to it. So I got in fairly quick and that's when I got the results, when I got the results. The point of this is, you know, I want to share that you know, while I live with chronic illness and some pain with arthritis and Crohn's disease, I've chosen to live in this place of hope and gratitude rather than a place of what if, and while it can be frustrating,
I know, for me, for my mental health, I just can't go there, I can't allow myself to live there. And so with that I just want to share that a little bit. And so don't be afraid to ask for a second opinion If your doctor isn't supporting what you're looking for. Go get that second opinion. So I'm hopeful and I hope this message encourages you as well. Have a good one.
