Another Week with My Crohn’s Disease

Saturday blog days. This is still so new and odd to me. I find myself stressing for Fridays, still, and I worry about scheduling appointments or making plans. I keep having to remind myself that I have another whole day and that I can take my time on Saturday to write, have coffee, and, enjoy my day.

After last Saturdays blog post, MRIs and Valentines, Philip and I went to the Irish pub again, to watch the Cats game. Philip made a pot roast earlier that morning, so dinner was already done.

Sunday, we planned on buying a new kitchen table. The table we’d been using had a leg that was wobbly, and it finally gave out. We shopped the peddler’s mall first because we love haberdashery, and even found a few we liked. Some were too large for the back of the Subaru, and the one we put an offer on had hidden defects that were found when we tried to take it apart. No good, so we headed to the Kmart nearby.

The Kmart is closing in Georgetown, so everything is drastically discounted. Some items 75% off or more, so we wanted to check out their tables next.

Looking at their selection, we found a table set we loved. A long table, with optional chairs or bench seating, both came separately. We wanted it all. And, doing the math, it was half off — Kmart Kendall set.

We drove home to measure the kitchen, which should have been done in the first place, and the table would be perfect. Then we went back to get the set and we got the only bench that was left. We had to physically make the table and chairs ourselves, but I ended up making the chairs myself, I was on a roll.

A few hours later, we had ourselves a set made and I am still in love with it every time I go into the kitchen. The bench is so homey and there is so much room. By Tuesday I was already making placements and a table runner for it, I already had the perfect fabric in mind.

Monday, my homework day, I finished my Research in journalism course and began Journalistic Writing I. Looking at the Course I am so EXCITED. At first, I thought I’d be bored of the class, like my other courses, and ready to be done. But, I just found out that one of our textbooks is the Associated Press StyleBook, the journalism bible.

I mentioned this book last year when I happily purchased two from eBay and I keep one on my desk. This book has definitions, uses, rules of writing, a journalism must have. I am happy to use mine for a class, finally. I have access to some online PowerPoint’s about it and some beginners tools for AP Style. I’ll keep you updated about it I’m sure.

On Tuesday, I sewed. I had to call GI about my first MRI CD of images, and I was told to drop the disc off Friday. I tried but no one was there, not even a receptionist. I was told they were ‘probably at lunch’, so I still have it.

I sewed the table runner I mentioned earlier, with a set of placements to boot. I had this burlap blue-willow style fabric I got from my mother that worked perfectly. I made the runner so it would drape down the sides and the placements for when the runner needs to be washed. I may even make napkin and silverware holders this week if my hands aren’t aching. And that’s been awful, now that I mention it. My thumbs hurt all the time. But, alas, I won’t see Occupational Therapy until April, for another consultation, go figure.

While I sewed, Philip made lasagna. He’s been cooking more and more. I made muffins after dinner, I was happy to make them since dinner was made for me.

Wednesday, I submitted my column, and it went live on Friday. This week was the third of my four-part series about Crohn’s disease, Coping with a Crohn’s Disease Diagnosis. In this article, I talk about how I got through my diagnosis less than a year ago and how I am getting through it today. I would suggest reading it, too.

IBDNews Today is a great source for information, and BioNews Services offers many different websites specific to different diagnoses. If you need a site for anything health related, take a look there.

Also, on Wednesday, I got the last of my Valentine’s day gift, a blanket with a photo of Bilbo on it. Philip had found a Groupon deal and had to get it. It shall be my new Remicade infusion blanket I take with me. It’s so beautiful in person, and so soft! Bilbo’s face is perfect on it.

To add to my delight, I got a faux leather jacket I had ordered from Poshmark, with two retro dresses that are so perfect photos do not do them justice! I love a deal! If you don’t know what Poshmark is, then download the app!

Since I had been suffering insomnia and pain all week, Thursday I was useless. I have been up till 3 am most mornings, and when I try to sleep I toss and turn. I get up with Philip to say goodbye in the mornings but I have been going back to sleep. Thursday, I didn’t really leave the couch. I tried to sleep all day but no success.

Another MRI for Mary – It Could Be Worse

Friday, I had two doctors appointments, a head MRI, and mental health. I colored my hair that morning and then headed to my first visit.

Another MRI for Mary – It Could Be Worse

The MRI was for neurology, due to my migraines, the almost blacking out, and, my loss of consciousness spell. I fell asleep for this scan, too, just like I did last week. Once I get settled and the nurses give me blankets, I am out cold.

For this MRI, I planned ahead like last week and made sure I wore no metal to the appointment, not even metal clasps on my bra. I got on the table at the appointment and a helmet-like contraption went over my head. I was given headphones that played music and the scan itself only lasted around 20 minutes.

The tech woke me up after it was over and I was on my way. I had to make a pit-stop at GI for the disc I mentioned earlier, and then I was off to my next appointment. Mental health appointments are at another VA location, so I got to go across town from doctor to doctor, but I did get to stop for coffee in between.

Another MRI for Mary – It Could Be Worse

Since I had an hour to kill between appointments, I sat in the Subaru and listened to music while I waited. My IBD News article had posted during my scan, so I spent this time sharing it across my social media sites, adding it anywhere I can. ( Coping with a Crohn’s Disease Diagnosis: Third in a Series Coping with a Crohn’s Disease Diagnosis: Third in a Series )

Therapy went as expected, I can’t go without crying at least once. We literally discuss the day to day of my life and I vent about what’s going on. Once that was over, I headed home to meet Philip and grab Bilbo.

The weather has been crazy warm here, 70 by 8 am, so forest fires are a threat. Philip had to work late Friday, so Bilbo got to go to the soccer complex and run around for a little while.

Today, Saturday has been a long day of writing and not much else. I slept on the couch, again, and woke up around 11 am. With no real sleep and body aches, it means another day where I’m useless, but that’s okay. Writing this should be and is sufficient and counts for something. Thanks to those who remind me of this.

For my Crohn’s, I still have no answers about either MRI. I have no idea when I’ll get the EEG. I need to see Primary Care about my ovarian cyst, Myrtle because this month has been crazy for me. I won’t go into details but I have shark week too often. My hands hurt, my skin is so sore, but the medicine/lotion has helped to make my skin softer at least.

I’ll get my next infusion Friday, along with the blood tests to check for antibodies or resistance. So far, that’s the only appointment I have but we shall see.

The plus side for the week? I’m still writing. I was added to a list of the Top 100 Crohn’s Blogs, ranked at #20. I’m pretty stoked about that.

I look forward to writing more. 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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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%!!

To Donate:

www.cureforibd.donordrive.com/campaign/icbwblog

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IBD News Today Column:

Welcome to ‘It Could Be Worse’ – A Column by Mary Horsley