I know for a couple of my previous posts I have been kind of a ‘Negative Nancy’, and after a loooong talk with Philip, I am trying to maintain a positive outlook, because I WILL eventually feel better.
I have not been angry at my body this week, I am more tired and exhausted than anything else, but I’ve forced myself to smile more, laugh more, and try not to think about the bad stuff. One week down, the rest of my life to go.
Since last Friday, I managed to go on a 50+ hour binge without having any food because my stomach hurt so badly, even before food, so I knew it would be hell. And when I do eat, nothing seems to stay down anyway.
The only thing that makes sense to me right now, is I believe that my stomach has gotten so irritated, that it has caused some bowel narrowing, so nothing is making it through.
Either that, or something is stuck, or the ulcers just disagree with all foods. I have to stop telling myself “I’ll eat what I want because it’s going to hurt either way”, because I’m sure that’s not helping the cause.
Even with boring meals, like plain baked chicken or tuna sandwiches, nothing is staying put for me. My throat has been sore all week, as you can imagine, from vomiting everything back up, and I feel like I’ve had a bowel prep every day. Ive thrown up every meal for 6 days straight. Yay for me.
I missed seeing my wonderful in-laws last weekend, an unwanted cancellation on my part, and I missed another chance to see friends. I’ve turned into a flake and I hate it. It was also my brother’s birthday and my 10-year high school reunion. None of which I participated.
I stayed home, by myself, and felt miserable most, if not all weekend. Yay for me.
After taking the Topamax, come Sunday afternoon, I found myself sitting trying to have a conversation with Philip, but I could not & did not retain anything he was saying. I even had stopped everything I was doing to focus on his comments, but nothing.
Again, I was blank with brain fog. I was stopping my sentences halfway through, and I could not focus. On anything. And, I had homework to do!! I procrastinated until late every day because my mind would be elsewhere. To be fair, I did get a 9.62/10 on an assignment Monday afternoon, after writing for a few hours, so maybe I’m just good at BS-ing communication law essays?
So this week we decided that I am easily bothered by medication, because, yet another has caused side effects to the point of me quitting them, the Topamax is no more. I forgot the name of my new medication, and I haven’t been able to remember all week.
I forgot the name of my new medication, and I haven’t been able to remember all week. I will get new medication for the migraines, today actually. With this specific medication, there is less risk of baby making! YAY!
And, to make it even better, I also read that pregnancy on Humira is not an issue – ANOTHER YAY! – so I am really stressing to be put on this specific drug. It seems to be doing wonders for a lot of people who are suffering, so I can only hope it will bring my Crohn’s into remission, too, and I can get back to my old self. The one that didn’t feel so bad every day…
These new medications, they leave us a little more hopeful in the fertility journey, with fewer drugs standing in our way. And of course, the silver lining, that I don’t have to worry about ‘dumbing’ myself with the migraine meds. Now, if I can get off the Dermatology medication, we can be set to re-start this IUI fertility process as early as January of next year. We are thinking positively!
I did manage to have one GREAT day this week, my birthday on Wednesday, as I’m sure you saw if you follow any of my social media sites. But even that day left me throwing up dinner and on the couch, in pajamas, by 9:45.
I may have looked okay and smiling on the outside, but I wish you guys could see my insides or understand what this feels like. At 28, it is the best I’ve ever looked, but the worst I’ve ever felt. Go figure.
But, even through my feeling rough, Phil did keep me smiling and laughing the whole time, so it was a great birthday in spite of my Crohn’s issues. I am very lucky to have someone who celebrates me the way he does, not everyone has a relationship like mine or a person they can fully rely on. Thanks, Babe!
Thursday led to more stomach aches and puking. Not a very eventful day, to say the least. I spent that evening writing this blog in the bathroom, so…yay me.
I have one week until my next procedure, that damn Double Balloon I have been talking about for forever, fingers crossed we don’t suffer a bowel perforation. One week to go!!
And 3 days later, I will see Occupational Therapy again for my carpal tunnel and steroid shots, and 3 days after that, I will meet my new GI doc, Dr. Wolf. We have a busy 2 weeks ahead of us.
13 more days and I may get new Crohn’s medication.
13 more days and I may get to look forward to putting my disease into remission, a positive for all of the negativity I have been through these past 2 years of struggling.
13 more days and I can focus on healing, rather than the pain and depression every day. Staying positive and hopeful is the hard part, as you can tell by my many previous Debbie Downer blog posts.
And that’s today’s focus: being happy about my life-changing, devastating, traumatic, chaotic, butthole hurting and stomach lacerating, nonstop, chronic illness. Today we focus on being happy with MY Crohn’s disease.
This week, I had someone actually tell my mother that they were happy that I am suffering from Crohn’s disease – maybe not in such classy terms, but nonetheless, pure and intentional cruelty. Especially to wish someone else ill or to find pleasure from their pain. My mother wasn’t too pleased to hear this person was ‘happy’ that I am suffering, but I’d say she handled it as well as she could, by removing the problem person from her property. Go Mom!
So, to focus on that, you’re happy for me, are you? If you are reading this, and let’s face it, you probably are, please know that I am happy, too. The difference? Your happiness comes from hate and mine comes from knowing I am trying my best.
While you may be happy that I suffer from my Crohn’s disease, I am happy, too. I am happy that my disease has helped to remove those cruel people who don’t really care about me from my life. How I see it is, if you were meant to be a part of my life, then you would be a part of my life…so…
While you may be happy that I suffer from my Crohn’s disease, I am happy, too. I am happy that I have such an amazing group of friends and family that I know I can rely on if I need them. We don’t have to talk every day or even speak once a week, but I know they are there, and I can call at 2 AM if need be. Unlike with you.
While you may be happy that I suffer from my Crohn’s disease, I am happy, too. I am happy that my disease has allowed me to make new friends with the many amazing people that I have come to know, people who also suffer my ailments, the people who have become my virtual family. You guys get me and you understand the struggle.
And while you may be happy that I suffer from my Crohn’s disease, I am happy, too. I am changing my negative outlook, day by day, little by little, and I am finding out my own self. What do you have, other than a truly cruel attitude and a clear disregard for boundaries or general human decency? Nothing.
So go ahead, wish me ill, wish me pain, wish me problems, be happy that I am sick, whatever you want. It will not affect me. You do not affect me. While you may be happy I suffer, I am happy and I am thriving.
I’d choose to have my life over yours ANY DAY, because, through my suffering, I am fighting this disease, I am learning from this illness, I am owning my issues and I am trying to survive.
Even when I’m chronically ill, I am always happy to be me.
So be happy for me all you want, because It Could Be Worse.
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Thank you for reading, and for keeping up with My Crohn’s Journey.
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