January is coming to a close and I am about 4 months into the healing part of this flare-up. I’ve finished the 3 initial infusions of the new medication I’ll be taking for my Crohn’s Disease and now I’ll move onto what they call On Body Injections that I’ll administer myself.
When I went to my hematologist for my bloodwork recently I knew my hemoglobin would be low. It was low when I left the hospital in October, but I didn’t expect it to be a 7.5. That’s pretty low. That means I must be deficient in iron as I tend to be when I am in a flare up. With Crohn’s you tend to not absorb Iron for some reason. So now I will need to get iron infusions. I never thought I would have to go through this again. Or maybe I had just really hoped I wouldn’t.
The Importance of Awareness
On that one day I encountered 4 people that haven’t seen me since I got sick again, and they were all shocked to see the shape I’m in. They all were not aware that Crohn’s Disease could be so bad and cause such issues the way it has to me.
One friend was shocked that I could become so malnourished to the point that I would need a wheelchair, my hairs falling out and I’m severely anemic.
That is a big part of why I have made the decision to share so much here in hopes that it will spread awareness about this disease and maybe lead to something positive.
If enough people start to become aware that this disease is so horrific, maybe somehow it can lead to more research and better treatments. As of right now medications for this disease such as mine cost up to $24000 American dollars per injection! With money like that being made why would pharmacies ever want to do more research? Especially when the mode of treatment for people like me seems to be “oh you’re having a flare up? That must mean the meds stopped working. Let’s move on to the next one!” Then another name brand medication is being used by doctors, and being approved for another disease.
Now I’m not an expert on how these things work and I don’t want to spread false info. This is simply my observation over the 14 years I’ve been dealing with this.
Acceptance is Difficult
I’ve had a really hard time coming to terms with what has suddenly become of my life. Even though I have experienced all of this before, it has not made it much easier. I went from working out, getting stronger. My wife and I were trying to have another baby. Plans to move and to travel. Suddenly, what feels to me like overnight, all of that is over. Then losing my brother on top of it all has just made this so overwhelming.
My body has been the hardest part to come to terms with. All of the strength I had gained is gone. I can barely walk. I had to buy new clothes to make up for all the weight loss only to have to buy yet more because the Prednisone has caused weight gain. I’ve also taken to wearing hats as my hair has bald spots and my face is so swollen it’s uncomfortable.
I will be honest, I cry a lot this time around. I often wonder how many times I will go through these flare ups in my lifetime and how long will my lifetime be? I know that is morbid but it’s my reality.
Squint for the Positive
Now for the positive side. Being this ill again has forced me to slow down. I spend many afternoons sitting on the porch watching Alaina play. While I did do that before, I’m just not able to play with her like I did. Instead I photograph her and try to make memories that she can look back on and not always just remember how sick her mama was.
Looking Ahead
My goal for 2025 is to focus more on one thing and one day at a time. I mentioned in my last article that I was going to focus on shooting only one camera per month and review that camera. This month I am enjoying the Voigtlander Bessa R2-C Mike lent me.
I’ve been steadily working on the review through out the month and it’s probably not going to be finished by February 1st as planned, but it’s coming.
I’ve been able to start developing my film again. I can do one or two rolls before my arms just start to shake, but I’m so happy to be able to start doing it for myself again. I don’t know what it is but having my hand in each step of making my photos is so rewarding.
Final Thoughts
Thank you for sticking with me through this very difficult time. I know for some of you, you may just look at it as complaining, but this is my lived experience. I’ve chosen to share it to spread awareness of the reality for so many. I hope you’ll share it with others who may not know much about Crohn’s Disease and Colitis.
Keep an eye out for the Bessa Review and I’ll be posting my camera for the month of February. It’s either going to be the Leica IIIF or my new-to-me Nikkormat. Stay tuned to my Instagram for that announcement!
Until next time, stay motivated and keep shooting.
You go ahead and cry. It’s healing. I wish you love and hugs!! ❤️💋
❤️ thank you
I cannot imagine how anyone could think of your message as one of complaint. Crohn’s disease is a truly cruel disease that has once again temporarily robbed you of your aspirations in life. I wish you a speedy recovery. Sometimes even support from strangers can help a little and your problems have motivated me to reach out to you. Your determination to try to overcome your adversity is inspiring. Stay brave. Very best wishes
Thank you. That means a lot to me
💛💛