Pain. Last blog post I focused on my body pains and Allodynia and not much changed for me this week.
I’ve had pain every day. I wake up, if I’m lucky enough to fall asleep in the first place, and I’m immediately in discomfort. I wake, and urgency follows, with cold sweats, body shakes, the works. I’ve had a fever on and off, had blood drawn for inflammation, and I had my Crohn’s infusion, Entyvio #4.
Thursday for my infusion, I had little to no sleep. I got to the VA in the nick of time, but nothing was ordered for me in the labs. Every infusion, before I get settled in the infusion lab, I get my blood drawn. And every infusion, I check in with the lab and wait for them to call my name, usually to tell me that the tests haven’t been ordered.
Luckily, I call my doctors cell. It is much easier to contact her that way, even with being in the same building. I’ll call, tell Dr. S I’m in the blood lab and she immediately puts in the orders for testing my kidney and liver panels while on the Entyvio and Imuran.
I must have been dehydrated, it was the first time having trouble finding my veins. It took them a moment to find a good one to use, and the smallest butterfly needle was needed. Usually, both of my arms are perfect for getting blood, even having three really really good veins on both. In the infusion lab, my skin was even tough to get an IV started, too. It reminds me of trying to pierce through plastic or something tough, pushing the IV through into my arm is always the worst part, other than the dreaded Coban tape that welts my skin.
The premeds I’ve been receiving before infusions seem to help my initial reactions but where I have begun working at the VA, my legal name in their system had to change. With the change, the nurses had no idea who their patient was, and there was no history of my legal name, as I have always used my military name, my maiden name within the VA.
Since they had no history with my new name in the books, there was no premeds or anything mentioned to prepare, so I had to wait while they placed those orders in as well. I take Benadryl and Promethazine for my nausea, and I’m given Tylenol to take. The nurse gives me Ondansetron (Zofran) and we wait 30 minutes while I get fluids to begin the Entyvio.
I was at the VA for this infusion longer than usual, with having to order up every step of the process as it was happening. I am somewhat smart with my infusions, though, bringing a hodgepodge of items to keep me distracted during. I bring my phone, obviously, but I also bring a blanket. I get cold a lot more than I used to, and so bringing my own blanket is important. I almost forgot to grab it that morning, I was lollygagging and slow getting ready, I didn’t even attempt at drying my hair or putting my cat eye on, which is something I rarely do. I had to run back into the house to grab the blanket and my rectum pillow, too. I couldn’t forget Harry!
My next infusion, if we stick with Entyvio, should have been on this year’s Thanksgiving, but remembering that I had a colonoscopy before Thanksgiving one year, I made sure to schedule it for the next Monday after the holiday weekend. I see Dr. S with GI a few weeks before, so unless we change the infusion to Remicade again, I am not sure the plan for my treatment. I suspect here soon they will request another scope or pill capsule endoscopy, to check up on my bowels since it has been a while since my previous inside look.
With Harry and my blanket, I bring a charger, my planner, headphones, my large coffee and other little items. I bring lotions and hand sanitizer, my face mask, and my migraine glasses. I make sure to bring things that I may end up needing and to prevent being unprepared. I plan on sharing my own Crohn’s Essential Emergency Kit in either a personal blog or column post with IBD News.
I try to write during the infusion but I usually just end up watching YouTube videos or something like that. If you see in my photos, I’ve started to wear my naturally curly hair, and so I have spent a lot of time watching curly hair routine videos and researching curl creams. I did buy a diffuser this week and I cannot believe I didn’t do this years ago. Not hot styling my hair and allowing it to just go wild is amazing and I’ve mentioned it a lot with photos that I am obsessed. I may never straighten my hair again! The only downside is that I wash it every day and the color fades faster.
A positive for the week, I was just talking to my sister the other day about my want to be a published model. I mentioned I would like to be a cover model as well, someday.
AND lo and behold, just 4 days later, I realize not only have I been published but I have also made the cover of Girlfight Magazine! – ( www.Girlfightmagazine.com – http://wskel.com/magazine/pdf/gfmag-04.pdf )
This women empowerment series focuses on the theme ‘Fight Like A Girl’, so of course, I had to do something patriotic and use my American flag from the Navy. I am absolutely honored! 🇺🇸 #fightlikeagirl
Negative events that have happened, I’ve lost control of my bowels this week, more than a few times – which is more than I’d ever like, and I break down and cry. I find it embarrassing and probably one of the worst aspects of IBD. My Crohn’s is not working with me. My Crohn’s is not healing. My Crohn’s is an everyday battle that I am fed up with.
I take so many medications for my ailments, I had to upgrade my pill organizer, yet again, because my Gabapentin is way too large. This new Gabapentin, being stronger than my last dosage, has definitely left me with dizzy spells and blurred vision. It is usually in one eye, but with my evening dose, I begin to have a hard time seeing without a blur. I take the Prednisone in the mornings now, to help curb some of the insomnia tendencies, but I still find myself restless. I toss and toss and toss, eventually just playing on my phone until I feel my eyes start to get heavy.
In the beginning, I started out only taking a few meds, they fit in my smallest case, but over the course of 3+ years, I’m up to 16 1/2 pills daily, not including Tylenol or migraine meds or my Promethazine if I take it before dinner. This new case is massive and slightly heavy but it holds my medication with extra slots for the meds I may need during the day. I looked everywhere for a larger case, Walgreen’s, Rite Aid, even Walmart, but never found one larger than the norm. Thankfully Kroger had this new one and it should be last time I have to upgrade for a while.
I’ve called in sick to work at the VA for two weeks now. I cannot seem to get things under control. My meds give me blurred vision or double vision, I am up all hours of the night and my entire body hurts. Losing control of my bowel at work or suffering from any of these issues is a hassle and a hazard.
I know my body is struggling, I have had skin breakouts and I know it is because of my weakened immune system and because I’ve felt so bad lately. I even have a stye on one of my eyes, so things just keep happening. Hopefully, this Prednisone and Entyvio will kick in soon. I hate not sleeping, not really eating too much, waking in pain and feeling fatigued and hurting all over.
I’m hoping for better weeks ahead. For me, It Could Be Worse.
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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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IBD News Today Column:
Welcome to ‘It Could Be Worse’ – A Column by Mary Horsley
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