Another week has come and gone, with no relief for Mary.
I have spent 75% of my time this week in the bathroom, with my legs asleep from sitting too long or vomiting what food I have actually tried to snack on.Yes, I’m still puking. I have not kept down a full meal since July and I’m beyond tired at this point.
I’m beginning to have more pains than gains, with no relief and more issues added each week. I have had right arm pain so bad that I haven’t been able to bend or move it this week, and I have continued to skip meals. Our evenings and weekends consist of movies on the couch, something common for these past few months.
Since last week’s post, I finished another week of class (96% grade!) and this week I will complete the course. I have slept on the couch for the past few evenings because I toss and turn, and turn, and turn. I feel so terrible for disrupting Philip’s sleep that I go to the couch to let him be.
Tuesday, I had the worst insomnia I had ever had in my life. I was up from 2 AM, until around 6:30 AM, restless and feeling more than rough. Philip woke me around 7:30 to say goodbye, and I even went back to sleep until 10. That never happens.
You can see in my face how tired I am, with bags under my eyes and a fake smile. With makeup, you’d never know it. I’m sick and I don’t feel well, but I put on a face and get through the days. This is why Crohn’s is an invisible illness, it is very difficult to show you guys just how bad I am feeling. Please be kind, these pictures are rough.
If you follow me on social media, then you will have seen that Humira Wednesday #4 came and went.
I shared this video on my Instagram and Facebook page, to hopefully give insight to those people who claim my disease ‘isn’t that bad’ and to show others what my injections are like. I know when I first witnessed a video of someone injecting into their stomach, I was in shock seeing it and I was unsure whether I’d be able to do it to myself. If you listen closely, you can hear the medication gargle as its being injected at the end.
Oddly enough, videotaping and planning to share with the world helped me to inject quicker, without too much time to think or dwell on the pain to come. I may do that with every injection just to force myself to stab quickly.
Considering Humira Wednesday #3 left me with a trip to the ER and chest pains for over a week, I was so nervous for this injection. Will it cause me chest pain? Will it cause me joint pain? Will I have urgent bloody bowel movements that I’m so used to? Or will I finally wake up and feel somewhat okay? You never know, so you just have to do it.
I remove the ice pack and alcohol swab my intended injection area, open the Humira pen, take a deep breath, and stab. Then I grimace, count to ten, wait for the gargle, check that the medication is done, remove the pen and exhale.It’s much harder to do than it seems. I was shaking but I try to stay calm. Usually, the Humira makes me tired, so I did nap Wednesday afternoon for an hour or so, a rarity for me. I made soup and grilled cheese that night, and I tried to go to bed early since I hadn’t slept much in the past few days.
When I did finally lie down, I woke up Thursday, on the couch, and I could barely move.
The left side of my back was so painful that it was causing me severe pain just to sit up. I did not even get up to say goodbye to Philip that morning, he kissed me goodbye as I lay there on the couch, miserable.
I am not 100% certain whether it was the Humira causing me pain, my bowels, or Myrtle being vindictive again. Technically this is the 2nd month of using my birth control, so I was hoping she would be dissolved by now. (See Frankie, Myrtle, and the Double Balloon).
So far, I have not had chest pains this week, and my Humira representative called me yesterday just to check in on me. I had to fill her in about the ER trip; I had tried calling her that day, but since it was Friday evening, I figured she was out for the weekend. She was somewhat in shock that I had gone to the emergency room with chest pains from my last injection. (See Emergency Room)
She told me that chest pain is NEVER a good thing and that I should ALWAYS go to the ER if that happens. She told me yesterday if I continued to have chest pain, to make another trip to the ER, so thank goodness I have not had that issue again. Fingers crossed it was just a fluke or caused by my bowels and the wall thickening. I don’t think I could live with that as a symptom forever.
Once I told her about my CT scan findings and the bowel wall thickening, she was very sad to hear it. She informed me that usually, her GI patients start to feel better around this time. Especially since I had the loading doses of 4 injections, then 2 injections, and one injection biweekly thereafter.
Usually, around week 7 her patients start to find relief, but comparing my CT scan from August to now, my bowels have only gotten worse. I have never seen inflammation in my large bowel, it has usually only been in my small bowel, which means my disease progressing.
Since I have had urgency and incontinence recently, it makes complete sense that I have issues in my sigmoid colon down to my rectum, with slime and all those fun symptoms still happening. My Humira rep told me that she did not think the Humira was working for me. She told me to continue to follow up with GI on Tuesday and to let her know what they say.
They may take me off the drug, considering I haven’t felt better and with the chest pain, but we can’t be for certain yet. I’m almost expecting them to request another colonoscopy, it would be my 4th, to get biopsies from the large bowel area of inflammation, since that hasn’t been done yet.
As I was writing today, I got a knock at the door. Another cooler of Humira was dropped off with another month’s worth of injections. I have around $10,000 worth of medicine in 4 Humira pens just sitting in my fridge. It’s absolutely shocking the cost, especially for it to not be helping me.
I will see GI and Mental Health on Tuesday, and in between, I will have my blood drawn for more kidney and liver panels for the Imuran and Humira use. On Thursday, I will see Dermatology and Neurology, too, so it will definitely be a busy week of doctors appointments for me. I will keep you posted, I’m sure.
But, this week wasn’t all bad I suppose. I got the rest of my Halloween costume and Philip’s costume together, and I even freshened up my green hair. These next few weekends will be dedicated to seeing friends and celebrating with them, trying to maintain a positive outlook through my crappy bowel disease. Gotta find the silver lining in it all. 🙂
So, I guess, It Could Be Worse.
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Thank you for reading, and for keeping up with My Crohn’s Journey.
And as always, any information you’d like to offer up about Humira or any of my struggles and issues, I have open ears and I’ll happily take any tips you have!
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