Well, again, I’m a slacker. Another two weeks have come and gone.
And what takes up my time? Sundays used to be for music, but my Summer of Sundy has officially ended, sadly.
My twin and her family came into town this week, bringing herself and her husband, his ex-wife and all of their 4 children — I had a house full! It was a wonderful time full of ice cream, spaghetti, haircuts, marinating on the couch and cinnamon roll breakfast. I never get enough time with the kids, the time seems to fly by and I always get upset when they go. Only 7 more weeks until Mindy is due with her second son, Tucker. We can’t wait to meet him!
I have been doing everything I can to apply for Phlebotomy and Communication jobs. I got fingerprints taken at the VA for the job there and I also have to do the same for the federal prison job I applied for. Waiting for a background check for both jobs and a pre-employment physical for the VA, I could see myself working both jobs and getting to stab lots of people.
Even if I did each of them part time, I plan to always look for a better opportunity. Just today I applied for journalism and social media careers, and the year salary differences are significantly more than what they would be just drawing blood. Decisions, decisions.
I still share my experiences with IBD News. I actually began a new series this week, Crohn’s Disease Questions. I’ll focus on questions and comments that come my way, everything from food questions and suggestions to the questions that can hurt.
My time in between job searches and applications, my Crohn’s disease continues to take over my body.
I stay up all hours of the night, of course, with that ever worsening insomnia that is driving me mad. Sometimes I don’t even fall asleep until the sun rises, and then I only get a few hours until I get up for the day, feeling guilty for the day being wasted. I have even canceled a number of photo shoots because I just cannot get myself up and motivated.
Sometimes I am up in the night, either puking or with ‘bubble guts’ as I’ve been calling it. I get cramps and instantly nauseated without warning. I’ve even suffered another ‘accident’ on myself, which always leads me to tears. It is traumatizing. It is embarrassing. It is urgent and when I don’t have control, it is upsetting and stressful.
Ever since I began my Entyvio infusions, my fatigue has gotten worse, my joints and my feelings of suspected gout has increased, with both of my thumbs and big toes aching.
Sometimes it keeps me up at night from the pain. I try popping and cracking my joints but it only gives me momentary relief until they start hurting again. I have yet to hear about my wrist MRI. I have half a mind to call them and request another, this one for the right side.
I finally saw my Neurologist, I got a new doctor overseeing my care now. Since I began the Entyvio my migraines have started occurring more often, so we upped my Nortriptyline to three pills per evening instead of two. That makes eleven daily pills, not including my melatonin gummies that apparently don’t help me and my sleep.
I had my last of the loading doses of Entyvio just this morning, it is week six of this treatment. I mentioned to my doctor that I felt almost better being on the Remicade when I compare it to the Entyvio. I’ve done research on these medications and sometimes patients are put back on Remicade, but with a larger dose and more frequent infusions than every eight weeks.
Since I’ve had more bleeding, joint pain, nausea, migraines and the usual bowel issues since beginning the Entyvio, my infusion nurse had to call my GI doctor, Dr. S, to discuss and confirm our treatment plan. Dr. S, since I’ll see her in September, decided that we’d continue with the last of the Entyvio loading doses, since sometimes it can take upwards of ten weeks to show improvement, and I’d let her know how I feel next time I see her.
It took two sticks today to begin my IV, my first vein blew and I try to avoid using my inner elbow veins so I can actually move my arms around. I always joke about starting my own IV, perhaps then I wouldn’t get blown veins. But, at least I got another bracelet for my collection, right?
I luckily got my pre-meds again this time. I was there in the infusion room for barely a moment before the lights started to hurt my eyes and I needed my migraine glasses, especially since I had already woken with the beginning feelings of a migraine coming on. Before the infusion even began I had taken two Imitrex, a Benadryl and Promethazine. With my premed cocktail and the Va’s Tylenol and pre-meds concoction, I was more than ready for the infusion without head pain.
I tried to nap during my infusion, laying my head on my rectum pillow, Harry, but it was freezing in the infusion lab, I had forgotten a sweater or blanket, and the machines giving the medication make so much noise, especially with more than one machine going off, that I just stayed up and tried writing this post while I waited.
I cannot say enough about those of you who keep up with my journey and ramblings. I try to be informative while also using this outlet for my own peace of mind. I’ll keep you up to date on what happens with me, of course.
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!
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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