After Saturday’s post, Another MRI for Mary, my weekend went as per usual, filled with marinating on the couch, finishing homework, filling my pill case, and, writing for my blogs – yes, plural. I can’t believe it. It is still quite nice to know that I am out there sharing on multiple outlets and bringing awareness to the crappy disease that is Crohn’s.
This being the end of the month, I got to request my first payment for my writings. I am beyond happy to be getting paid to do something I thoroughly enjoy. And to write and bring awareness for something VERY important in my life, you can’t beat that. See IBDNews for my column, It Could Be Worse.
So, I decided my first payment was going to go towards Me. I had initially thought about just going to get my nails done, something I like to do every now and then, but lo and behold, my tattoo guy, Asa, he had shared that he had some availability this week, so I jumped on the opportunity. If you’re looking for tattoo work done in Lexington, Kentucky, then head over to Charmed Life.
I think I may do this with every paycheck, take that money and work on the projects I have in mind for my body. Tattoos may hurt, but at least this is a pain I can control.
My past 8 tattoo sessions have been done by Asa, as I have been focusing on fixing past tattoos before starting a whole new project. First, we fixed my waist. I had an awful ‘tramp stamp’ that needed some love, and we went all the way around my waist, creating my belt tattoo.
And now, I had intentions of fixing my wings on my back. I had originally gotten the wings about 8 years ago maybe, give or take a few years.
I had gotten tattooed and then extremely sunburned in Thailand, and that pulled a ton of my color out of the tattoo. Sunburns will ruin new tattoos, and I had not taken care of them, so that means a re-do is necessary. With my waist having fresh color, the wings looked that much more faded and ruined. So, I planned on getting them re-done this week, scheduling an appointment for Wednesday. You’ll hear more below.
Monday was a homework Day and I am overly ecstatic for my Journalistic Writing I course. Remember, I get to use the AP Stylebook, a book I already owned and love, an added bonus to the course. For this week’s assignment, I got to submit an article style paper with roughly 500 words. This is less than my average article with IBD News, so easy peasy. I got to write about an author who is a Kentucky native, Hunter S. Thompson, more books we already own.
I got to read his article about the Kentucky derby, The Kentucky Derby is Decadent and Depraved, and I had to compare it to a Mark Twain story, A Bloody Massacre Near Carson. This course is definitely not a boring one, and I enjoyed my first week more than any other course I have taken with Phoenix thus far. I look forward to Monday, to see what I get to write about this week. 128 days until I am finished. 4 more months.
Tuesdays, I write for IBD News, starting my weekly articles and adding to them all day, and more editing on Wednesday. I had started my Crohn’s Disease Medications: Part Four in a Series article last week, because I have tried quite a number of Crohn’s medications in the past few years. This being the end of my first series about Crohn’s, I wanted to end with treatment options to give some hope that if one doesn’t work, there is always something else you can try.
This four-part series was my go-to for Crohn’s, summing up the early signs and symptoms, getting a diagnosis, dealing with the diagnosis, and, what medications are available. You can find those articles here:
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
My next series will focus on procedures that you will possibly have to undergo for Crohn’s disease, such as colonoscopies, endoscopies, a double balloon, a pill capsule endoscopy, a perianal abscess that leads to a fistulotomy, anything I have had to do.
Oh, this series shall be interesting to discuss all of my procedures and the embarrassing moments that came with some of them. Stay tuned for my IBD News posts, they usually post around 10 EST.
I have continued to have insomnia almost every night. I have been up until past 3 AM some mornings, and Bilbo has gotten into the habit of waking me in the middle of the night just to go outside to drink from a water bowl out there. He has water inside the house, of course, but I think he just likes to go outside and lollygag and force me to come and get him while I am in pajamas. Damn needy pooch, but he is my baby.
So, I woke Wednesday tired but it was tattoo day! I had to be there mid-afternoon to begin and I was more nervous than I should have been. After my hips and waist hurt so bad, I was anticipating some severe pain. Oddly enough, it did not hurt! I mean, it hurts, but nowhere near what I expected. I lied there and just hung out while I was getting tattooed, and 2 hours later, I had another piece of my collection finished.
I am SO SO SO happy with the way my wings turned out and we even decided to keep some green like the original wings. The new wings look so much better than they did before, and the color difference is just amazing.
I took Harry Asshole with me to the appointment. For those who don’t know, this is my rectum pillow from IHeartGuts.
One more tattoo fix and I can start on my new projects. I want sleeves, my thighs, my hands and my face tattooed eventually. Don’t worry, nothing too gaudy will be on my face, just a mandala or something near my ear. Check out my Pinterest and you’ll see what I mean.
After my tattoo and before I went to Kroger for dinner, I went to Goodwill and found the cutest two sweater dresses. One has the perfect twirl and a turtleneck that is to die for, and the other a slim-fitting v-neck. I couldn’t pass then up, I only wish there was more I liked. It’s hard going your closet with black when you like to wear color.
Thursday, we had planned on going to Slainte and dinner for our date night, since we knew Friday could be too tiring after my Remicade infusion, but Philip surprisingly didn’t feel well, so we went home and had whatever I could find in the freezer to make for dinner. He went to bed early and I was up with insomnia until early Friday morning.
Well, for Friday, I got up and prepared for my Remicade infusion #4. Needing to be at the Lexington VA before 11 AM for blood tests, we actually arrived super early, around 10:30 and had to wait a moment to get called back. I actually got up that morning and curled my hair for the first time in a long time. My hair is getting so long!
For bloods drawn this week, in addition to the kidney and liver panels to make sure they’re okay while on these Crohn’s medications, they tested for antibodies and a resistance to the Remicade, they tested my Thyroid, as well as a CBC and other tests. I had around 6 vials lined up to be filled and tested. Once bloods get drawn, then I get to head the end of the hall at the VA, where the infusion lab is.
By this time, my article for IBD News had posted, I logged into Facebook and it was the first thing in my news feed, reminding me that it had been posted. In between bloods and getting settled in the lab, I try to share my articles over all of my social media sites and make it known with Crohn’s communities. This is partly why I changed blog days, so I could focus on one article a day instead of trying to share two on the same day.
I was happy to get a different nurse this time, as I feel the nurse I had been getting the past few times is a little bit distracted. This new nurse had me in my chair and hooked up in no time, but she put my IV in a different spot and she told me it looked as if I had low blood pressure. Maybe that’s why I had my blackout spell a few weeks ago?
The infusion room was overly busier than usual, so much so that Philip didn’t have a seat for a little while. Instead of sitting in the way, Philip went to take my CD of images to the GI department upstairs.
Remember the MRI I had done 2 weeks ago for my abdomen, they had given me a CD of images. I had called the VA a few times to see if they were given a copy, and I even stopped by the GI department to drop it off but no one was there. Well, GI never got a copy of these images, and if we waited for Tri-West, the outside source used by the VA, then they wouldn’t get copies for at least a few weeks, if not longer.
So, Philip took my copy to the GI department, and now I have to wait even longer to hear back about the results. Still no results from my head MRI, and no scheduled EEG as of late.
My nurse was looking through my chart and the VA had just received the copy of my Double Balloon endoscopy from last summer. Like, really? They JUST got copies. I won’t rant about the VA and Tri-West in this post, but there are always so many problems when it comes to these appointments and my information. There is ALWAYS something going wrong. (See Another Rant About Veteran Care)
For the infusion, I got weighed, as usual, and I have actually gained three pounds. I have to remember this is a good thing considering I have been throwing up since last August. It just started and never went away. I had lost weight so gaining is all to blame on the boxes of Girl Scout cookies that I’m devouring.
I got my normal dose of Hydrocortisone before my Remicade and then waited the required 30 minutes before my real meds could begin. Philip brought me back lunch, some chicken tenders, onion rings, with some honey mustard sauce. (These are some of my favorites).
I didn’t end up keeping it down, even with the Promethazine beforehand to curb my nausea, but it was nice while it lasted. I always try to take my anti-nausea and migraine medications before the Remicade, to prevent any issues as much as I can.
A few hours later, after sitting with my headphones in and Philip next to me sleeping, I was finished with my infusion and we were on our way home. I was upset with myself a little, I had forgotten to bring Harry to the infusion.
Surprisingly, I wasn’t too tired or nauseated after this infusion, so we planned to try to re-do our date night. We planned to go to Slainte, as usual, and we would wing it for dinner, which ended up being leftovers that were in our fridge and a longer time spent at Slainte than we thought. The evening finished with us marinating on the couch, where I ended up sleeping a lot of this week,
This week had a lot of insomnia, tossing and turning in the night, and a lot of pains. I got to suffer through Shark Week this week, which only brought on some bad thoughts about myself and our infertility struggle. Tuesday I shared a post I had been writing for a while, 50 Months of Infertility.
I had started this post a while back, and I never had the nerve to post it. I shared it on Tuesday, because, after a period that was 11 days late, leaving me overly hopeful, Shark Week finally arrived. I was having a rough morning, so sharing my distress helps me get through it, I suppose.
I have severe allodynia this morning, where my skin feels so overly bruised that a light tough aches me to the bone. My Crohn’s symptoms are still present, and my skin looks pretty bad behind my ears and between my breast. On the plus size, my shoulders are looking a little bit better and my arms softer.
If only we could just get all of my issues under control, then I would be set. I am bummed that after 3 loading doses there is no relief as of yet, but maybe by my next infusion at the end of April, hopefully, I will notice a change.
This week I have no appointments, but 4 or 5 already scheduled for the next few weeks.
In 2 weeks time, I will have been diagnosed with Crohn’s disease a year ago. A year ago!
That makes 3+ years that I have been struggling and suffering through this crappy disease. 3 years and I’m still trying to find a normal day.
It is truly exhausting. One thing after another, it never seems to end.
But, today we marinate and write this blog. 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!
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%!!
IBD News Today Column:
Welcome to ‘It Could Be Worse’ – A Column by Mary Horsley
Previous Posts on It Could Be Worse:
I don’t know if you are in the new york area? I have gi illness and the last year has been truly horrific but I have begun to see a nutritionist, Dr. Grovit, who specializes in GI disease and especially chrons. I can’t believe it but my symptoms have been manageable for the past two and a half months. I recommend him to you if you can see him–he came highly recommended from someone with chrons.
Hey Mary, first things first your hair is awesome! It’s pretty cool and I’m kind of jealous haha. Second, I’m so sorry to hear about your battle with Crohn’s disease. It is truly a nasty disease that takes no prisoners. I’ve been officially diagnosed with Crohn’s disease for over eight years and it definitely has it’s ups and downs. You sound like a very tough and preserving person so keep on fighting! Remicade was my initial miracle drug, and I’m hoping it is just as effective for you. After your loading doses you start notice a huge difference ( or at least I did, everyone responds differently) in how you are feeling and it’s reflected in your labs–you’ll see inflammation markers down. I was on Remicade for a couple of years before I developed antibodies and it became ineffective. I’ve seen a couple medical journals recommend taking a steroid injection along with the regular pre meds of Tylenol and Benadryl to prevent your body from forming antibodies. Fingers crossed Remicade will put you into remission! If you have any questions about Remicade or any other biologic I’ve been on most of them so feel free to ask 🙂 Keep being awesome! I’m excited to read more of your blog 🙂 Thanks for being such a great inspiration! You rock 🙂
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Dylan! Thank you for commenting, I’m sure you could rock some green hair, too! Ivf just been catching up on your journey, actually. So sorry to read about your long 8 year journey thus far, but I’m glad you can maintain positive, too. I am so happy the Remicade has brought you relief, I am still hopeful and looking for the good days! I know I get hydrocortisone as one of my premeds, I’m hoping I start to feel better! I’m actually starting a liquid diet tomorrow since I’ve been still having issues. 😂 I look forward to reading more about you and your Crohn’s, too! Keep sharing your story, I may have questions at some point! 😊 And ditto! Crohnie’s like you rock!
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Don’t be surprised when I start rocking green hair! That’s seriously so cool! Yeah, life can be rough with Crohn’s, but having a positive attitude can really make the difference. I’m glad to hear you get the hydrocortisone injection with your premeds! I’m on Entyvio now (which is only a 30 minute infusion and is awesome) and I get the hyrdocortisone injection as a premed…just wished I could have gotten it sooner! Make sure to keep us updated on your liquid diet. Homemade chicken broth is my fav, just saying. Hopefully the liquid diet and Remicade can start helping you! Let me know if you there’s anything I can do to help! Thanks for the compliment and keep up the good work! 🙂 🙂
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I can recommend a few great green colors to choose from! 🍀 The VA pretty much tells me what to get and we go from there. After Humira was no good, we hoped the Remicade would start ASAP, but alas, it doesn’t work that way. I bought a case of ‘meal’ replacement drinks (chocolate with 30g protein), but I’m sure I’ll go into all the fun details with that soon! I’ll have to keep following you and see about the Entyvio! 30 minutes! What! I’ve read good things in support groups, so who knows! And the same, I’ll help if I can! Thank you too! 😊
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Haha good to know 🙂 Yeah, unfortunately it takes quite a bit of time for these meds to start working–Entyvio is the same way. For full effect, it takes over Eight weeks to really start feeling some improvements. Hopefully the meal replacement drinks start helping, but be careful as some of the drinks tend to have Carrageenan which some study suggests could actually cause Crohn’s/UC. However, more research is needed to actually confirm that. Hopefully the Remicade starts kicking in anyday now! Keep being awesome! 🙂
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Ooh! Good to know. I will look at the drink ingredients before drinking. No good! I know I’ve been on Remicade now for like 17 weeks and no improvement, so who knows. I am a mystery patient for sure. But thanks, and you do the same! 😊🍀
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Hmm it seems like you should be getting some improvement by now…ugh, that’s super frustrating! Hopefully your doc gets you on a regimen that actually starts working soon!
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Fingers crossed! Thank you! We are trying to figure it out I guess.