Well, another week has come and gone, as they seem to always do, with appointments and medications galore.
I have been on Humira for ONE WHOLE MONTH now, with no changes in my Crohn’s issues, but more problems than I began with, except we will get to that.
This has been the first week of using my new pill case I bought, and it has really helped me in remembering to take ALL of my meds. It stays on the kitchen table on a basket full of cloth napkins, just waiting for my AM/PM dosages. What fun.
Monday was another extremely bad day for me. I have to be honest and tell you guys that I had another accident to where I didn’t make it to the bathroom in time, and I had a complete and utter breakdown. Again. And I mean, I BROKE DOWN in a hysterical fit.
I didn’t even want to share this terrible photo of myself, but it’s only fair to share the good with the bad. You can see through my FitBit how my heart rate escalated as soon as I woke up. It’s like this most mornings, as I wake up with left sided pain and an urgency that makes me instantly ill.
I was and I am beyond ashamed, mortified, exhausted, and just weary of it all. This issue is not something I ever look forward to sharing with you all, sorry, but it has happened twice now. What will I do if this keeps happening to me?! What if I’m not home?! Ugh. The stress and anxiety just makes issues worse, too.
Philip didn’t even want to go to work because I was in such an emotional fit, but by Monday night, I finished another week of class and homework, and I tried to laugh away the embarrassment and humiliation I felt for something that I could not control. It is very disconcerting.
And on top of all of this happening, it is baffling that someone would suggest I am not as sick as I claim to be, as sick as they think I should be, or I don’t look as sick as they would like.
So, I do feel I have to address my rant this week that happened via my Facebook page, but we aren’t going to dwell on it for long. Considering how my week began and considering how my week has gone so far, Crohn’s disease is not something I would wish on anyone, let alone wish for myself. I have said it before and I will say it a million times. Crohn’s cannot be faked.
This week, an individual who will remain nameless, made claims that I am ‘faking’ my illness, based on my makeup, online use, and my photos shared on my social media sites; either that or it’s just the fact that I’m Me.
Long story short, if I am on my deathbed and I want to have a fully done up face or share shameless selfies of me, FOR ME, I will. Don’t base my level of struggle or sickness by my outside appearance because I will always try my best to NOT look like death walking.
Since that rant, I have tried to photo document every instance of my illness, and in just one afternoon, I had more than 5 ‘selfies’ from after I had puked. I even contemplated sharing them all with the world, you know, to help ‘prove’ my point above. I decided against sharing them all on my social media sites, and went with sharing my Humira Wednesday injection instead.
Here is day 1 alone. I can’t imagine if I had photos from every time I puked this week, the entire page would be filled with sick selfies. Maybe this will help the nay-sayers get a different glimpse into my daily life.
On Tuesday, I had my third interview consultation with the VA for mental health; this time with a little older lady who seemed very kind hearted and intrigued with my background and family drama. I can’t even begin to discuss all that hot mess.
Funny enough, this lady will not be my regularly scheduled therapist either, but I will be assigned another, more permanent one, ‘very soon’.
So, this means I get to repeat myself, again, and tell a 4th person the entire rundown on my life story. Each time I leave these appointments stressed out, with tears down my face, and emotionally drained with a stopped up nose. No. Fun.
As I mentioned before, Humira Wednesday #3 was this week, and this was the first injection I have had to do all by myself. The last two Humira dates I had a nurse and Philip available to help, but this week was all me.
I staged my bathroom in preparation, Humira pen, alcohol swabs, ice pack, check check check. I usually set the Humira out an hour prior, and I was reminded to take my migraine medicine and nausea medicine at that same time, too, to prevent either once I inject. (Thanks, girly!)
It takes me a little while to psych myself up, I have to just do it, even when I really don’t want to. My hands shake and I get clammy and nervous instantaneously. Can’t you see I just radiate with excitement?
It’s almost as if I forget what the injection feels like, because as soon as it breaks the skin, I get sick to my stomach and regret it. This shit is not pleasant. Really, though, it is not something I will ever look forward to doing.
The hardest part about the injection, other than the initial stabbing, has to be leaving the needle inside your skin for 10 seconds when my only instinct is to pull my arm away and rip the needle out.
It takes all of my willpower to hold it there until it gurgles under my skin with the end of the medication mixed with air bubbles entering my body. It really feels like gargling underneath the skin and you can really hear it out loud. This injection was the first time I bruised at my injection site, too, but it’s not that bad.
One month down, so I should be seeing some relief soon…hopefully.
And of course, I am suffering from some negative side effects.
Just my luck, not a week and a half after I get the steroid shots in my hands for carpal tunnel, and the Humira makes my hands and joints ache.
My hands have hurt every day since the injection, and Thursday night to Friday morning, my sleep was affected by severe knee pain.
I have never had any problems with my knees before in my life, but I woke up early Friday morning with such bad pain in my knees that I could not go back to sleep. I couldn’t even lay on my side with one leg resting on the other, the pain was unreal.
My Humira representative nurse/life coach called me on Thursday, to check up on how I was feeling, and I asked her about the joint pain and issues I’ve had, and she said that it was to be expected. Go figure. I had read that online, too, but I like to double check.
So far, every night this week, just like for the past 2 months, I have continued to vomit, now with chest pain and a sore throat to boot. I have kept no food down, not even saltines or soup. I hate this.
And, to make matters worse, I got a cold sore beginning this week, AND, my legs have been going to sleep while I’m in the bathroom. It happens so often that I can’t even count how many times now. It is always a struggle to walk or move and I find myself inching down the hallway, holding the wall, trying to slide my numb feet in the direction of where I want to go.
And even beyond all of that, guess what product shows up at my house to review? More ovulation and pregnancy test kits…..I could scream. But, let’s not dwell on that this post, we’ll just say that Myrtle is vindictive. (See Frankie, Myrtle, and, the Double Balloon)
Shew. It has been one of those weeks for sure.
I read a little this week, The Girl On the Train, and I began working on my Halloween costume for this year. I’ll finish the book this weekend, curled up on the couch in between vomiting fits, and I’ll prepare for another week of doctors appointments and chaos, I’m sure.
I will have blood labs this upcoming week, to check the liver panels and all that jazz with the Imuran medication, and I should be planning my next therapy session this week, too, with appointments for Neuro and Dermatology later this month.
My parents and younger brother will be in town Wednesday for a little while, so that should make this week a little better for me. Silver linings, right?
Because It Could Be Worse.
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!
For those of you who are continuing to donate to the Cure for Crohn’s and Colitis, I encourage you to donate towards my team page with CURE for IBD – where 100% of the funds We raise will be allocated to IBD research for a cure. That’s right, 100%!
Not only can my blog be found at MaryMHorsley.com but it can also be found at ItCouldBeWorseBlog.com !!
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Thank you for reading, and for keeping up with My Crohn’s Journey.
More Info On Crohn’s Disease at
www.CCFA.org & CrohnsandColitis.com & crohnsdisease.com
Previous Posts on It Could Be Worse:
Carpal Tunnel Shots & IVF For Vets
Here I Go Again – Humira Wednesday #2
I am currently on prednisone (10 mg) but my gastroenterologist wants me to switch to humira. Your post about humira and it’s side effects terrifies me. Have you been on prednisone? If you have, is the humira worse than the prednisone? Because it sounds so much worse..
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Do not let me scare you, my Crohn’s has been very irregular and wonky since it began, but I have read both good and bad about Humira. It can give you achy muscles and a lot of aide effects, but it can also put you in complete remission. I know people who absolutely love it and some who it didn’t work for. You just have to find what’s right for you, but you know that. I have not tried Prednisone, but I have heard that it can have side effects too? I guess that’s the worry with every medicine. I would just suggest try it, that’s all we can do until there’s a cure. I hope you find relief!
My heart breaks for you when you are tears bc of an accident! I know the feeling all too well! I used to wear pads all the time- just in case I had an accident in public- which turned out to happen quite often and more on a daily basis before I had surgery (2 weeks ago). Keep your head up and hopefully the humira will kick in soon! Wishing you health and happiness!
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Oh girl, I hate that you can relate. I hope surgery went well!! Thank you for the kind words, it gets rough sometimes for sure. I hope you find some relief too!!! 🙂
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Understand the accidents in public. Carry extra pads all the time.
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Oh no. I hate that you can relate. It is a constant worry, I’m sure, and it is becoming one for me as well.
Found your blog searching about Humira. Thanks for the read and sharing your stories. Your crying photo is so cute though you probably think not! I feel this is me often! Good luck to you and your journey. 💗
Oh I’m so sorry you re searching Humira. I hope they figure out something and help you find some sort of relief soon, whatever it is! Thank you, but you’re right. I hate having emotional moments like that. I am glad you found the blog and wrote! ☺ Thank you and good luck, too! 🍀