Since last my last post, ‘Busy, Busy‘, another two weeks have come and gone.
Another two weeks and I am that much closer to graduation. I have 2 weeks after Monday and I cannot begin to tell you how ready I am to be done with homework. 16 days to go.
And in those two weeks passed, my body has been fighting against me. I feel overwhelmingly tired, my throat and lymph nodes are continuously swollen, my hands and joints ache and I have even been running a fever quite a few days.
I have met with primary care, to get throat cultures to check for strep. I did not have strep but my doctor did think I was getting sick. I have had a few cold sores even though I take Acyclovir, and with my tonsils and swollen throat and lymph nodes, my doctor told me to get hydrated and caught up on my rest.
Ah, rest. I have had some of the worst insomnia I have ever suffered this week. I have found myself up all hours of the night and morning, even up until 6 am or later with no sleep. Even now, it is after 4 am.
Beyond primary care, I also met with MSK for my hand pain. After a few ultrasounds on my wrists, the doctors were already set up and preparing to give shots in both of my hands, but the main doctor suggested an X-ray instead. My doctor thinks I have synovial fluid collecting, causing a cyst of sorts on my left wrist.
Because the area and surrounding areas were thick skinned, the doctor thought an x-ray would show the entirety of the cyst, but because it didn’t, an MRI on my hand will have to do. Depending on what they can see will determine whether I will have to have another MRI or a surgery later.
The VA could not see me for an MRI for over a month, so I will have to use the veterans choice program again, a program that can either run smoothly or something, anything can and usually will go wrong.
I also got to see a doctor to get a breast ultrasound for my swollen lymph nodes seen in my smashogram (read: mammogram) last year. Instead of another mammogram, a follow-up ultrasound would do. Hallelujah no squeezing me until I almost pop! It was so painful last time. My results already came back, with the same lymph node swelling and visible in this set, too.
And as for my Crohn’s, this week has been brutal. I don’t know if it’s my body’s way of reacting or what, but everything has hurt more. My bowels have been sore, with on and off migraines, fever, random vomiting and body tenderness. I have barely left the house this week beyond my doctor visits and infusion.
And Friday (yesterday), was my latest infusion and also my first Entyvio infusion, Vedolizumab. The Remicade hadn’t helped, and after so many weeks of no help, it was time to switch medication again.
Like Remicade, Entyvio comes in an IV, but the whole procedure was different. There was no blood pressure cuff hooked up, no hydrocortisone drip started before the biologic medication, and it only takes around 30 minutes and then you’re done for the day.
I felt nauseated after, even though I’d taken my anti-nausea. I had to nap when I got home and I felt slightly dizzy with the spins. Hopefully, I don’t feel like this with every infusion.
This was the first of three loading doses, with infusions at week 0, 2, 6, and every 8 weeks thereafter. I even wrote all about Entyvio for my IBD News column this week, focusing on biologic medicines. See Treatment Options: Biologic Medication Entyvio is Next for Me.
In this single article outside of my usual pattern of writing a series, I wanted to focus more on the biologic drugs and medications offered to Crohn’s disease and ulcerative colitis patients, specifically the ones that I have tried personally.
For about a month now, my articles have been in the ‘Most Popular Weekly IBD Columns’ list with IBD News Today. I am forever grateful to my readers, so thank you all! I shall continue to keep learning about Crohn’s with you.
I still take the Azathioprine and the rest of my many meds, except for my migraine meds. I have to see neurology before they will refill my prescription but I’ve avoided going due to the inappropriate reading and mention of my mental health notes by my neurology doctor. I have requested a new doctor so that I can get my migraines under control.
After my MSK appointment, I had scheduled an interview to finish paperwork for the VA Hospital. I had a meeting with a manager, but when I had gotten there, she had forgotten! The ladies within the office called her, and they had me stop back in on Friday, after my Entyvio Infusion #1.
I went down to her office, met with the manager, finished my paperwork and tax forms, and now I get to wait. It could be soon or it could end up being a couple weeks before I hear back, and at that point, I will be able to create my own schedule and work as much as I like. I would love to work most days and still have time for my writing.
I would love to work most days and still have time for my writing. I graduate in a few short weeks, I can plan on starting at the VA by mid-summer, and I have this new medication to look forward to. Fingers crossed!
For me, 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!
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%!!
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