After my last infusion, I have had migraines daily. I especially suffer the night of and the next day after the Entyvio. My stomach seems to act up more and I feel generally rough for the next week after.
It has been eleven days since my last post, Entyvio Infusion #3, and this week has been more hectic than I’ve been used to.
I had multiple job interviews lined up, with my first one, a pre-employment physical with blood and urine samples taken for testing. Of course, a drug test and TB test was required, but I did not have to get the normal TB shot in the arm.
Instead, they tested for TB with my blood samples, also testing for all kinds of other things, diseases and such. Even though I have had multiple TB tests, including the rare 2 Step TB test, they couldn’t use my tests from this past May, so a new one was required.
Well, all of that was supposed to be last Friday. It being the day after my infusion, I had to reschedule for the middle of this past week, five days later. It was bad timing on my part, I should have known better than to think I’d feel okay the next day.
Luckily, the VA is in dire need of phlebotomists, so rescheduling was more than okay considering that I have already met the hiring manager and all of the blood lab technicians.
On Wednesday, it was interview time. I had the VA pre-employment physical, which included eye tests and color blindness tests, with a hearing test and test for strength. This included touching my toes and squatting a few times, and of course, there was tons of paperwork.
The doctor performing my physical listened to my lungs, heart, and stomach, and he told me that he could actually hear my Crohn’s disease working against me, that it sounded like two cats fighting on my insides. I had never had anyone tell me they could actually hear my Crohn’s so I found this extremely interesting.
After one VA, I had to go all the way to campus for labs. They all greeted me at the blood lab and larger main lab area and they knew exactly who I was when I arrived, as they had all heard all about Mary with the green hair.
After the VA job chaos, I got to go to my second interview, this one at the local prison. I was contacted through a hiring contractor for a phlebotomy position at the prison, and I made it to the interview process. When I arrived, I was under the impression there would be an actual sit down interview, but instead, I was given a tour of the facility and lab.
Walking into the prison was nerve wrecking. So many bars and barbed wire, tall fences and locked doors. I was taken around and had to go through all kinds of security. When I left, I was convinced I had the job with fingerprints and orientation to follow.
My hiring contractor texted me after, with all of the details about the job and asked me if I was given an offer, would I accept? I, of course, said yes, and I waited. This seemed to be good news for the day before my birthday.
Come Thursday, I turned 29! I celebrated my day having breakfast for lunch, a peddlers mall trip, seeing friends and having dinner and drinks, with a little bit of music to boot. We ended up at the local brewery, Country Boy, where Grayson Jenkins was playing. He plays with my beloved Sundy Best sometimes and he is such a great musician. He even sang Happy Birthday to me, how kind. Thank you all for taking the time to wish me a happy birthday.
I did get bad news though. I received an email saying that the prison had interviewed and then chosen other candidates for the position. I was super bummed! And for this news on my birthday, what a shame.
But I’m still hopeful for the VA gig. The hiring manager told me they were ready for me as soon as the paperwork, like my background check, was completed. Hurry up and wait.
I received nasty comments on my blog’s Facebook page this week. I was offered a free $30 coupon to run ads for my pages, so I used $14 and $14 for both, leaving a few dollars give or take. In a matter of just days both my pages went nuts. It Could Be Worse went from 1040 likes to over 3000. My model page, Mary with the Green Hair, it went from 400+ to over 2000. If you have pages, I would highly suggest running ads. I think I’ll start using $5 or so here and there to boost them some more.
As for my Crohn’s and other issues, I have had insomnia almost nightly. I had to stop talking my Melatonin gummies, someone reached out to me through my last blog and they had sent information about drug interactions.
With Imuran and other immune suppressing medications, like the infusions I get too, using Melatonin can prevent them from their full healing potential. So it looks like I’ll have to discuss my insomniac options with my next visit to GI or primary care.
I mentioned before that I almost feel worse after infusions and my migraines occur more frequently. Bubble guts is what I’ve called my stomach cramping and issues here lately. It is highly uncomfortable and tiring still.
I hurt all over some days with allodynia and I still suspect Fibromyalgia. I also question my toes aching every day, mainly in my big toe joints. They ache and turn reddish, as well as the pain in my thumbs and hands. I called the VA about my hand x-rays and MRI on my left wrist but they have not returned my call.
For my weekend, I did nothing. I stayed on my couch for most of it and I couldn’t even make dinner. I get overwhelmingly tired and then at night, no sleep. Seeing sunrises is nice and all but I used to be able to sleep 10+ hours if given the opportunity to. I love to sleep but I’m just no good at it anymore.
My stomach cramps up, I toss and turn, I fidget, and I try to lie there but no good. I’ve been puking up meals again, but more frequently with stomach bile. I try to eat crackers and boring things to settle my stomach but that doesn’t help either.
I know I seem to always have something wrong with me. Trust me, I know and I wish it weren’t this way. But thank you all for keeping up with my ranting and complaining.
And just as I was writing and editing this post, my doctor who did my physical last week called and told me I had tested positive for TB. Now, he thinks it’s a false positive but he ordered a chest x-ray and more blood tests to be done.
I had to drive over to the VA and do all of that again. I find it humorous that I’ve had so many TB test this year and the one I’m waiting on come back wonky. Go figure. Fingers crossed it was just a fluke, I won’t know for another week…
After researching Tuberculosis testing, I may very well have TB and the positive a true positive. I was given the Quantiferon TB Gold Blood Test both visits. This test, which uses proteins only found in TB, is a much more accurate of the available TB tests. This makes me nervous, and it could mean either latent disease or active disease.
With my already weakened immune system from the Entyvio and Remicade infusions, with my Imuran for Crohn’s disease, too, it is very likely that I did get TB and it is not a false positive. I was at both VA’s last week, I was on UK campus, I visited the prison for the interview and I saw friends during my unusually active week. I think I should start wearing my face mask, especially since I’ll be at the VA and winter (read: sickness) is on its way and I cannot have that.
Otherwise, the doctor told me that everything else was good to go and that he was ready to clear me for employment once this test came back normal. So hurry up and wait it is.
For me, It Could Be Worse.
And as always, any information you’d like to offer up about Entyvio 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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