Friday night after my last blog post, It Could Be Worse, Philip and I went out to dinner for ‘date night’ at a restaurant nearby. The restaurant itself was nice, but I was slightly let down because the food was highly overrated.
While they boasted their fried chicken, they had overcooked ours, and it came with undercooked potatoes. Perhaps I am biased about my fried chicken, but I could have made a better dinner at home. The location was nice and the staff extra friendly, though, so maybe we will give it another chance at redemption.
Saturday, I cooked dinner at home and we decided to stay in, as our date night was the night before. Sloppy joes and taco chicken, salad and mac-n-cheese. With chocolate muffins. I know, I know, it is almost too exciting!
Sunday, or should I say Superbowl Sunday, we went to lunch and Philip made pulled chicken for dinner. We walked Bilbo since the weather was shockingly nice for an early February day. Notice my Cure for IBD hoodie. 🙂
I gave Philip the haircut he had been wanting for weeks and I only cut myself once. Ha! That left-hand middle finger knuckle of mine always gets nicked by my shears. That night, I organized my weekly pill case, as usual, prepping for another week of medications. I feel like an old lady sometimes. I think I have said that before.
And OMG Go figure, Lucky Philip won money from the Superbowl game! So get this, I thought I would be nice and buy Philip a few squares on a game for the Superbowl, and when the game went into overtime, the scores lined up with his name. Had I put my name on them, we would have lost. Lucky Philip always wins!
Monday, another week of homework completed. That makes 21 weeks to go. 147 days. This week of class was somewhat difficult, so I was up extremely late working on my papers that were due. Writing about reliable sources and research methods is not necessarily an easy or fun assignment.
After 2 am and submitting my homework, I couldn’t fall asleep. I stayed up writing my column for IBD News Today instead. My article posted this morning around 10 AM and I will try to keep it posting around the same time weekly. This week’s article, Early Signs and Symptoms of My Crohn’s Disease
Monday I was up until well after 4 am pulling it together, but at least I was productive in Mary’s insomnia party for one. Plus, I completed the whole thing in one sitting. You can find my It Could Be Worse Column
with IBD News Today through the links provided.
I am overjoyed that IBD News Today is allowing me to write for them and I am happy that they have given me the choice of what I write about. This week’s column starts my 4 part series about Crohn’s disease basics, from my perspective with experiences of my early Crohn’s signs and symptoms. Next week’s column, part 2 of the 4 part series: How Crohn’s Disease is Diagnosed.
Tuesday, after I finally got up (I slept until 11ish), I submitted my column to my editor, made a carrot cake (my favorite), but I was otherwise for the day useless given my insomnia spell from early that morning.
Oddly, all week my sleep schedule has been wonky, tossing and turning, up all hours of the night and sleeping on the couch. When Philip leaves in the morning, I have gone back to sleep every day this week. This is something I never do, I am the world worst napper, but for some reason, I couldn’t get up in the mornings. I even had one morning where I could barely even open my eyes, let alone get up to say goodbye.
Wednesday was my latest mental health appointment. Yikes. I had not seen Dr. C since before Christmas, and A LOT has happened since then.
This appointment we talked about doing things for me. We talked about my family. We talked about my health. We talked about my current emotions and before you know it, the hour has flown by. We rescheduled for another meeting in 2 weeks.
I also have both of my MRI’s scheduled as of this week. TriWest and the Veterans Choice Program called me on Monday to fill me in on my abdominal MRI appointment details for this upcoming Wednesday. Then, my head scan is, coincidentally, on the same day as my next mental health appointment.
And as for Wednesday evening and Thursday morning, I spent those painting. But you already knew that if you follow any of my social media accounts. You also would know the majority of things I mention in this blog. My paintings have a chinoiserie theme to them. I love the blue and white style china.
Thursday also had a weird vibe to it, I was on the phone with my sister and I look to my backyard and there was a bunch of birds out there! There were birds all over the yard and the fence, and I don’t know about you, but it gives me an eerie feeling looking at it.
And that would bring us to Friday. At this very moment, it is after midnight and I am writing this portion of the post, I’m sure it will not be shared until later this afternoon. Just an FYI I suppose.
With my Crohn’s disease this week, my body hurts, especially my hands and neck, and well, my entire body, really. And my skin, it is still blah. Please don’t judge the photo. My sleep, clearly wonky. My vision, it is doubled with the Gabapentin. I still get dizzy spells, I am still puking up what I eat, and, I am a tad forgetful as of lately. But overall, I hurt.
Have you ever woken up and hurt so bad that your clothes are almost too painful? Have you ever had skin so tender that just a slight touch hurts more than it should? Sitting hurts, crossing my arms hurts, moving hurts, breathing hurts. All I want to do is sleep sometimes.
Today as I stood and put some fresh green hair color in – to refresh my hair before ‘date night’ – just putting my hands and slight pressure on my neck was almost too much to bear. Leaning up against the counter, and my stomach aches to the touch. I can’t even have Bilbo on me because his weight is too much. I swear I believe I have Fibromyalgia, but that’s something I need to talk to my doctor about. My entire body feels like I have been beaten up and bruised during the night and I wake in pain.
I call these days my eggshell days. Someone else coined the phrase, and it seems more than appropriate for the way I feel. Eggshell days. Where my skin is so sore that even a slight touch and it’s going to hurt me. Philip can’t hug too tightly when he hugs me goodbye in the morning. I grimace in pain, but what can you do when even the back of your arms and legs hurt too? Fingertips hurt. My luck is that I bump the counter or run into a doorknob with my side.
I avoid contact of any kind because I am just tender
. It happens all the time. It is tiresome. It is constant. It is uncomfortable with skin oversensitive and I know it will last all day, maybe more than that. I have to find loose-fitting clothing to wear, like a dress, because pants are a definite no, leggings a maybe. Sometimes pajamas are even too much and that’s when you know it is an eggshell day. Getting up and going to appointments, I fake it til I make it, and I look fine, but inside I ache.
I’ve been having to wear a bra, which if you know me, you know I hate to do, but I’ve been having to wear one because my right breast STILL hurts and it hurts even more with movement. And then, the bra even hurts to wear. The Gabapentin only help so much without causing me to blackout or get medicine drunk.
So, my entire skin hurts. I can’t explain it further than that, really. Eggshell days is the best explanation for how fragile you feel when you suffer from issues like Crohn’s disease. You have to be gentle with us/me on these days because no matter what we do, we continue to hurt.
Eggshell days. So, we have to fake a smile sometimes, put on our big girl panties, and the damn dreaded bras, and we have to get up despite the pains. I may complain a lot, but I hurt a lot. No justification needed.
Beyond the complaints and my moans and groans, tonight will be another ‘date night’ for us. Philip is going to decide what we do and where we go again, and I eventually have to get up and get ready for the day. Read: wash this green color out of my hair. We may even see a movie this weekend too, with multiple dates this weekend. And then, to top it off, we will prepare for the upcoming Valentine’s day this week. I guess It Could Be Worse.
Thank you for reading, and for keeping up with My Crohn’s Journey. Please Like It Could Be Worse Blog on Facebook
And as always, any information you’d like to offer up about Remicade infusions or any of my current struggles and/or issues, I have open ears and I’ll happily take any tips you have to offer!
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