Well, where should I start for this busy week? I suppose I should apologize for another late post. Like last week, Saturday blogs then into Sundays posting, and my schedule all out of sorts.
Now that my IBD News Today column posts on Fridays, I’m struggling to pick my personal column day. I wanted to go with Saturday posts, but it being a weekend day, I’d much rather get things done and enjoy the day if I can, so it seems Sundays are my new go-to. At least I know Sundays are for marinating, so it should be the perfect day to get these written, edited, and finished.
Sunday blog days, then? I’ll try to stick with it and stop changing things up. But, if you do want to keep up with me, follow my social media accounts and subscribe to emails. You can do all that below…
At first, last Sunday, it was quite boring, which is a good thing. I stay up late on weekends when homework is due and insomnia kicks in. I’m used to being up all hours of the night now, but every now and then I’ll get an early night. See Up All Night, Sleep All Day
Since my brother and sister and her family were visiting this week, I had to finish all my classwork a day early. I was up until 1 am-ish on Monday morning and spent the day preparing for their arrival.
Monday went quickly, with every intended plan we made being changed. Instead of seeing my Mental Health doctor, which I seriously should have went and seen, I had to visit my primary care doctor instead because my throat had still been hurting. Looking at the back of it, my tonsils and uvula were swollen, including some of my lymph nodes down my neck, and it just looked sore.
My primary care doctor took a swab of my throat to check for strep, and I also had her look under my right arm. I woke up Monday morning with a lump in my armpit that was extremely tender to the touch, a raised area the size of a dime.
My doctor called the swelling a ‘boil’, but I have been doing my own research about it. From what I gather, it can be caused by the Remicade, but I will have to wait to talk with my GI doctor. Possibly a whole other issue to look into, Hidradenitis Suppurativa, which is common with Crohn’s disease patients, or so I’ve read.
So, since I had to visit my doctor and my sister was getting into town, we decided to just meet them at the Lexington peddlers mall since they had never been. I love when they visit because I get to see my twin, my nephew and my brother all in my town.
After shopping, we had dinner at the Olive Garden and then spent the rest of the evening planning and prepping for Tuesday’s photo shoot. (See Photo Op)
Tuesday’s photo shoot with Klix Imagez and La Sirena Designs was a blast! Not only did my sister create the cutest cami and shorts set just for me, but it was the brightest emerald green, just in time for St. Paddy’s Day! The photoshoot and the holiday set the tone for this week, Green with Envy.
Besides my own style, I got to help with hair for the shoot, getting to create some major curls and big hair for another model being used. Because my hair is also emerald green, we thought it may clash, so I got to create the wig and shoes I wore, ala Marie Antoinette style.
Seeing the photos makes me ecstatic!
The shoes are just an extra bonus since I can wear them with all of my St. Patrick’s Day costumes. The shoes, they were made with lots of glitter, sequins, and beads, all super glued to a nude pair of wedges I already owned that had a deep scuff on the toe. Perfect, since I knew these shoes were comfortable and would fit, I sat for hours adding more and more details to them. I’m sure the photo venue we used for the shoot, Studio 821, they will be finding the loose glitter and beads for weeks.
After the shoot, we went into Ohio towards the Bass Pro, and to find a UDF, so we could get milkshakes – my favorite.
Once we got back to my house, I got to make curry for dinner, imitating a Japanese dish that I loved when I lived there. CoCo Ichibanya Chicken cutlet with curry sauce and rice, it is to die for.
Throughout the night Tuesday and into Wednesday morning, I had on and off back pain, sometimes so harsh that I couldn’t even bend to open or close the oven or whatnot. But Philip brought out tubs of his childhood toys for Keith to play with, so who could resist?
Having such a hectic and busy few days, carrying around my nephew, happily, not taking it easy on my body, well, I paid for it later. My entire body ached on Wednesday and into Thursday. I was tender all over, again, my skin even hurting.
I couldn’t even decide what to have for dinner, so I had breakfast and Philip had Bagel Bites. Thursday was that uneventful…
Friday was IBD News Today column day, as well as St. Patrick’s Day, AND it was my 1 year anniversary of my Crohn’s disease diagnosis day. I spent the morning gluing more embellishments and beading onto my St. Paddy’s attire and refreshing my hair with more green for the day; green with envy through and through.
With my green shoes, the ones I’d mentioned earlier, a new green dress coat that I’d been waiting forever to wear, and my green sequin dress, we headed to Sláinte. Philip had his green seersucker suit, a beaded green vest, and a functioning vuvuzela, and in an Uber, we went.
After a few Stella’s and an Irish coffee, I was ready for food and a nap. We went to Fava’s and I got the Reuben and many compliments on my dress, my hair, and my shoes. I had people thinking I was in a pageant, that I’d bought my shoes, or that the green hair was for St. Paddy’s only instead of year round.
Oddly, our St. Paddy’s was probably the easiest year we have ever done, because I was home and asleep on the couch before the night really began. I blame my early night on my week of insomnia, lack of food, and drinks.
It’s been another rough week for being up all night and sleeping when I can, leaving me unmotivated and in pajamas most of the time. I always want sleep, I just can’t seem to fall asleep, let alone stay asleep for long.
I woke up on Saturday after sleeping for 12 hours, almost as if this was my body’s way of resetting itself for another insomnia-filled week. 12 hours, I haven’t done that in a while.
By the time I got up and had coffee, I had to get up and get ready for another day, my Saturday lunch and day date.
Georgetown has a brewery, Country Boy, and since we had never been and we found out they had a bar inside, we had to go. BW3s for lunch, paired with Stella and more hair compliments, was followed by the brewery.
We tried their beer sampler, a 4×4 of 4 choices. I am a friend of lighter beers but I wanted to try their espresso coffee stout. I’m usually not a fan but it tasted just like iced coffee, and we all know I love coffee. I ended up liking two new dark beers and a few others in their selection, and Phil went home with a growler. We went home and I made Sloppy Joe’s and Taco chicken with some Mac and Cheese and called it a night.
And coming as a surprise to me, Phil wanted an impromptu Sam’s Club trip before Kentucky played today and won. An even bigger surprise that we went back to the brewery today. To top off the night was some Japanese katsu udon curry, complete with the panko breading and my beloved curry sauce. That makes twice this week for curry! A definite highlight for me.
So mixed with my usual complaining and issues, there were numerous positives, including my family visiting, getting curry that takes me back to my time in Japan, and, I was even offered a part in a GI Advisory Board, complete with a trip to Nashville. I’ll hopefully find out more this week.
My hands still hurt, but that’s nothing new. My back has had issues, I don’t want to add more illnesses to my plate, and I wonder if the Remicade is ever going to work. I still puke nightly and I fight keeping even snacks down. Today, actually, we got protein meal drinks, to start replacing my dinners and help ease my irritation.
It may have been my first Anniversary as a Crohn’s patient but it is my third year as a Crohn’s warrior and my first year as a blogger. It was my first year truly documenting everything, and I am appreciative of those who have joined my journey.
As always, I cannot thank you enough for reading my ramblings and hearing me out. The past year has been a struggle through the issues, but a year I won’t soon forget.
For me, 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!
IBD News Today Column:
Welcome to ‘It Could Be Worse’ – A Column by Mary Horsley
Part I – Colonoscopies and Endoscopies
Crohn’s Disease Series:
Early Sign and Symptoms of Crohn’s Disease
Crohn’s Disease: Journeying Toward a Diagnosis
Coping with a Crohn’s Disease Diagnosis: Third in a Series
Crohn’s Disease Medications: Part Four in a Series
CURE for IBD:
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%!!
Hi! I came across your Pinterest posts today as I was looking up Humira. I’m a Navy Brat so I love that you have served our country. Thank you!
That being said, I have been quite ill for many years but could never get a diagnosis. I actually went to a dermatologist about my psoriasis the a few years back and he told me I “wasn’t sick enough” to see a rheumatologist or a gastro!
Fast forward… Last year I was diagnosed with lymphocytic ulcerative colitis. I hate my gastro! He never really looks at me and at my last appointment, proclaimed that I am in remission. Yep! Despite the fact that I eat almost never thing. It’s easier not to eat. I don’t go anywhere, unless I can pinpoint a restroom. I take Aprizo, and my hair is falling out and my Dr. Shrugged it off! And told me to take biotin. Yep! Like that’s something I didn’t know or haven’t done for years.
This year, I was diagnosed with Psoriiatic arthritis, Raynaud’s Disease, Fibromyagia and psoriasis. I’m currently on Apriso, Gabapentin and Methotrexate. I’m doing okay on the Apriso and Gabapentin but the Methotrexate is making me very ill. I have an appointment with my rheumatologist on Wednesday to consider Humira. I’m curious to hear what your experience with this drug was like.
I don’t have a support system of fellow warriors that you have. I do have an amazing Fiancée, son and parents that support me. But no matter how I describe everything….they try so hard to understand….they support me and are scared for me….but they really don’t get it.
If you can give me some insight on Humira, I would be really great fun!
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Hello Joan! Thank you for reaching out to me! I am always happy to meet new people, although I’m sad for the circumstances. I am so very sorry that your gastro kind of shrugged you off. I know finding a diagnosis can be almost as bad as the disease itself. I’m glad you sought out a second opinion, no one ever really understand your body but you. I am glad to hear that the apriso and Gabapentin are helping you, I have never taken methotrexate. As for the Humira, It did not help me, and I do not want to scare you. I wrote a few blogs about it, as it did cause me some severe back pain and joint pain. I couldn’t move the day after using it. After a few shots of it, I began to get chest pains and went to the ER a few times, but never really found an issue, other than bowel inflammation, so we knew it wasn’t working for me. I do know the stomach shots are supposed to hurt less than the leg, so if you do use it that’ll be good to know. I also iced my area before the shot. You will hear the medicine go in and that can be shocking as it gurgles in. I hope for your sake it can be your ‘miracle’ drug and help your pan. I am more than happy to help anyway if I can! – M
Lol! I didn’t type “fun”! I
Wish this was fun!
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Great blog! I have Crohn’s and it has caused me all kinds of problems. Keep up the good posts.
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Thank you! So sorry you have to deal with this too!
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