I thank all who continue to read my ramblings every week and I apologize for the delays. Saturday blog days turn into late blog nights, but eventually, I get them done and posted.
I lollygag and I lose my train of thought. I like to just go with whatever is in my head, remembering things here and there, and I have to mesh it all together before posting. Then, I have to edit photos and add my watermark, format it all, and yadda yadda yadda, you get my point. Another post that is late, so I am sorry. Bear with me.
This week’s blog theme ‘Up All Night, Sleep All Day’ comes from my insomnia and lack of going to bed at a decent hour this week. This is how Philip found me on Saturday morning, on the couch with my baby Bilbo. I was up until after 5, restless.
Every night this week has left me up until around 3 AM, sometimes even later, tossing and turning all night, and that leads to me going back to sleep once Philip leaves for work.
This has happened every single night and morning this week. Hell, we haven’t even slept in the same bed together in what feels like weeks. I feel terrible tossing and turning and possibly waking him in the night when I know he has to get up. Only once have I even crawled in bed after my late night insomnia party for one, I’ve slept on our couch instead.
And in the mornings, I wake when Philip leaves, starting the day with every intention of being productive. But, instead, I go back to sleep, unable to get myself up. Sometimes I can’t even bring myself to shower until 3 or 4, my body aches and I am so overwhelmingly tired. I just have so many things working against me that sometimes I can’t do anything.
I feel useless these days. And let’s be honest, this is most days.
My head usually hurts. I have had to nurse a migraine a few days this week. Oddly, I thought they were just starting to get better. Taking an Imitrex, Tylenol, Benadryl, and Phenergan medication cocktail, sitting in the dark, using my TheraSpecs migraine glasses, upping my Nortriptyline dosage, chugging a Gatorade, I do it all.
I see sparkles when I am showering and I know I am going to suffer. My left eye socket feels bruised or tender deep in the inside and I know a doozy is on its way. Light begins to hurt my vision and I pray it goes away. Sometimes I win, sometimes I lose. Yesterday was a win, but I don’t get that often.
My hands have a constant pull to them, where my thumb meets my wrist causes so much discomfort that even typing tonight was a task. Any use of my hands causes pain, but let’s face it, you kind of have to use your hands all day. I swear I just need to fix one problem with my body. Just one. Even that is too much to ask it seems.
And, of course, my bowels. I had Remicade Infusion Day #4 last Friday, and I have had what I call ‘Office Massacres’ every day since. It’s like my ‘office work’ that I normally talk about, but with more bleeding than normal. You would think that the Remicade would at least prevent that from happening, but it happens so often I don’t know what to do about it.
I had thought that I had gained 3 pounds with this infusion weigh-in, but I bought a new digital scale to replace my vintage bathroom scale, and I had actually lost another pound. The weight gain during the infusion can be blamed on my favorite black boots, they’re quite heavy.Sunday, I do nothing. I finish the least amount of homework possible, I marinate on the couch, I fill my meds, and, I make dinner. That’s about it. Philip worked fire watch that day and I did product reviews. So much excitement, I know.
Eventually you readers will find my schedule is pretty consistent, with Mondays for homework, Wednesdays for IBDNews blogging, and Saturdays are for you and I. Throw in a doctors appointment here and there, and my days are same old same old.
Monday, homework. This week’s assignments entailed writing a newspaper style article and a magazine style article and posting them to my Phoenix blog. Well, I didn’t even know I had the option to have a blog through my school website, so I had to create one. And then, I had to write about an event I witnessed, and tell the story two ways. Any other day this would have been interesting, but I was fighting off a migraine this day too.
This course has definitely forced me to write about things I would not usually write about, so I am using my school books and researching for each week more and more. I have not looked at this week’s assignments, but I am sure it will involve writing and some sort of digital format.
121 days until I am DONE.
In between writing for school, I colored my hair. Instead of using Manic Panic Green Envy for my green, I wanted to test other brands and see which color would keep the longest. With Manic, I felt like I was constantly coloring, with a different color showing through with every shampoo. Now, this isn’t the problem, I don’t mind the color changes, I just want the green to stay put. Testing new products is always fun but this can take some time waiting for hair fading and shade comparisons, so I plan to write a blog post specifically focusing on green colorings. I am sure you will see it at some point.
Also on Monday, I received a call from the VA about my stomach MRI, my small bowel follow-through, the scan that happened a month ago. It turns out there was nothing significant in the scans, no blockages or fistulas seen, which can be a good thing. There may be a liver cyst, but I do not know if it is anything to worry about.
My question is, if the liver cyst is on the left side and my ovarian cyst, Myrtle, is on the left side, could they be one in the same? Or perhaps this is why I have more left-sided pain than right? Another reason I will have to call my doctors and ask questions.
New note: I found out the liver is on the right side of my body. (Thanks, Murphy!) So, then that means I have a cyst on both sides of my body. Go figure.
Monday Philip came home with a bouquet of flowers, so that was an unexpected surprise. I had literally just plucked the one and only flower that had bloomed outside my house that day, a daffodil. Now all my flowers outside will die with this crazy Kentucky weather.
Tuesday was a shopping day for me, a rarity, but I needed crafting supplies and to buy the new scale I mentioned earlier. Hours at the Dollar Tree, Kmart, GoodWill and Kroger, and I had the majority of things I needed for this upcoming week. My twin will be visiting again, so that means another La Sirena Designs ‘Sheer Pleasure’ photoshoot! And we all know how much fun I had last time!
I am so excited for the outfit and hair for this shoot, I have made quite a few things to use, so you will have to stay tuned. I spent HOURS on the hair, shoes, and hat that I have planned to use, and my fingertips were covered in superglue a lot this week. I am not allowed to share photos of the items just yet, but if you follow my social media accounts, you will see soon enough.
This is only a teaser of the things I got to make. Stay tuned, please!
I also have pretty much bought the Dollar Tree out of frames, decorating full walls in my home with photos from my life. I bought frames on Tuesday, with more later this week. I just began hanging up old photos, even one from a trip to Hakone in Japan, posing with Mt. Fuji in the background.
This photo is from 2007-ish and had never been displayed in my house. I am a slacker.
Wednesdays are for IBDNews blogging. This week I began a new series, titled the Scope Series, focusing on the procedures that patients have to undergo for their Crohn’s disease, such as colonoscopies, endoscopies, a double balloon, a pill capsule endoscopy, emergency surgery for a perianal abscess that leads to a fistulotomy. Really, any procedures I have had to do with my Crohn’s and how the procedures went for me. To start the series, I began with Colonoscopies and Endoscopies, as these are usually the first go-to procedures.
I submitted my article late Thursday morning, later than I wanted, and by Friday it went live. My column has been made somewhat official with IBDNews because my column and name show up in their top menu! This makes me ecstatic to see!
Thursday was another shopping day. I know, I know, but I needed more. I had decided to embellish more things for the photo shoot and I needed more sequins and beading and glue. And picture frames. Like, 20 of them.
By Thursday evening, I had finally started the hair and crafting processes, having left the wigs in fabric softener overnight to give them a boost of life. All I can say is that I am beyond proud of myself for the product I created. The photos will be to die for, I’m sure. Tuesday, folks, Tuesday. It’ll be here sooner than you think.
Friday, after I woke up around noonish, my article had posted and I had to share it everywhere in between naps. I woke up a few times and I had gone back to sleep in between, but my eyes get so heavy that I just have to go back to sleep and try to help my body get rest.
Friday night turned into an extremely late Saturday morning, which meant Saturday blog day today was slacking, too. I even napped today, and if you remember, I have mentioned before that I am the world’s worst napper.
So here I am, blogging late, not trying to rush, but also not trying to be up until 5 AM either. Something has to give, I mean, it is already 12:25 AM on Sunday as I write this exact sentence. Saturday was here and gone in the blink of an eye. My days escape me and I am left with myself and my thoughts these nights. Mix no sufficient sleep with all the problems I already suffer and it is a recipe for disaster.
But on the plus side, I did have some positives this week. The flowers, the crafting, and, I even got a ring I had bought myself a few weeks ago. I ordered a Mordaunte’s Coffin ring, with the 5ct ‘Flesh’ on an engraved setting, and it is beyond beautiful in person. Picking just one color was the hardest decision. I wanted Flesh, I wanted Mold, I wanted Livid and Samhain. So Many Choices. I want one of each, please and thank you.
I had been stalking their Instagram page for weeks, loving every ring they had to offer, so I finally sucked it up and got myself one when they were on sale. I even got the engraved setting upgrade for free, so Yay Me! The box came filled with black confetti, which I love, and a sticker, some cards, a cleaning towel, and of course, the beautiful coffin gem ring.
Remember, up all night and sleep all day makes Mary cranky and tired, so off to bed, I go. It is past 1 AM here, going on 2, and so Saturday blog is really a Sunday blog.
Good night as well as good morning. It Could Be Worse.
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:
Part I – Colonoscopies and Endoscopies
Crohn’s Disease 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%!!