I don’t really know what has come over me. More and more time passes and I forget to update you on my blog. But, hopefully, that will change soon and I can get back into a habit of posting consistently.
In just 3 days, I will complete the last of my classes at the University of Phoenix, my final course being Multimedia Storytelling. On Monday, actually, I will finally finish my Bachelors in Communication and Journalism certificate. It has been a very long time coming, and I am more than ready to be finished.
Every week has been a struggle to find motivation for homework, with each week getting harder and harder. It takes me all day to get motivated for a minor assignment, and I have been slacking. But, 3 days to go, people.
In the past 2 weeks since my last post and Entyvio Infusion #1, I have had insomnia, my left wrist continues to ache, with my feet hurting as well. There was even one day where I could barely put pressure on my left heel or big toe.
For two weeks time, not much happened otherwise. I write for myself and for IBD News, I stay up late, I nap during the day if I can, I try to work in a photoshoot or two, and I hurt. Not much changes when you are waiting.
I am still waiting on my background check for the VA. I know the results will come back fine, but the waiting is the hardest part. I just want to get started already so I can do the things I want to do. I have goals. Plans. Ideas. It is just not easy to do when you are waiting on beginning a job and waiting on feeling better, waiting for appointments and waiting for results.
After 3+ years, you’d think I’d be better at waiting. At having patience. Most of the time, I do, but I just want something to work. Regardless of what people think, I do want to feel better. I am trying my hardest for remission, my body just seems to disagree with that.
And this Crohn’s disease has been grueling. Debilitating. It has been one battle after another, and the last thing I want people to think is that I ‘eat like shit and not trying to heal’. Because I am. These medications I am being filled up on have debilitating side effects, dangers from using them, and most have not helped my specific Crohn’s. Just like a diet can help some or not, medications can also have the potential to not work.
Crohn’s is so much more than just a GI issue, with symptoms beyond the digestive system. There is no cure. There are treatments to help reduce the symptoms and complications, to help with finding remission, but even that varies from patient to patient.
I will probably post yet another post focusing on this topic, much like my IBD News Today article this week, Diets and Treatment Options Affect Each of Us Differently.
Saturdays, I get up early and go play with my camera. Really, I get up to get fresh donuts, too. On Sundays, I continue to go see Sundy Best; this past week with The Revival. I am obsessed, as I have mentioned before.
Thursday I had my Entyvio Infusion #2 for the loading doses. I’ll have another in a month. Since my last infusion caused some nausea, my cold sores began reappearing, my chest has broken out, and I have had a migraine almost every day – AND I have no migraine medication since they refuse to fill my prescription until I see Neurology, and I do not see them until the end of this month.
I did end up taking a Fioricet and Promethazine before I arrived at the VA; my left eye began to ache on the drive over and I tried to help prevent my all day nausea. Now, the Fioricet is from a previous prescription, but because of the whole Neurology and migraine medication dilemma, I had to improvise to prevent something much worse.
Because I have had quite a few symptoms, my GI doctor, Dr.S, allowed some pre-meds for my infusion. I was given Tylenol and Zofran to help with my nausea and I sat with my migraine glasses on with my overhead light dimmed. I was told after the infusion to keep track of all my symptoms until next infusion and to let Dr. S know if I have any changes or if it gets any worse. Hopefully, the positives outweigh the negatives and we can curb any side effects before they happen.
Note: what I shared with you all was my image of myself and my infusion machine. But right before that, I got a shot of myself with the migraine glasses on. It is these small differences and details that the outside world would not see. You guys would never know unless I chose to share and there is no way for you all to know 100% of my life. I wanted to mention that I guess ‘people have talked about me’ in relation to my Crohn’s disease. While people may *think* they know everything about myself, my treatments, my diet, lifestyle, my day to day symptoms, but how could they? – They can’t and they don’t.
I even remembered to bring Harry Asshole, my IHeartGuts stuffed toy rectum. I had forgotten him my last few visits, but I saw him as I was leaving the house this time and grabbed him.
Anyway, after my infusion, I had some time to spare, so I went home and took a nap, considering my late night insomnia tradition that seems to have taken over. I napped for a few hours until I had to get back up for another appointment that day. Usually, my appointments for the infusion are on Fridays at 11, but now they are on Thursdays at 9 am; the VA had too many appointments for Friday and I didn’t mind the date change or the nap time.
I had to have an MRI on my left hand. I am guessing that the x-rays did not show the doctor what he wanted or needed to see, so the MRI was scheduled with the Veterans Choice Program. You guys know, that Veterans program that outsources appointments when the VA cannot see me in-house without an extended wait time. The program could see me sooner than the VA could have, so I got lucky and scheduled at the hospital that is a few miles from my home.
I did not expect that I would have to get into the machine like a normal full body MRI, but I had to lay on my stomach, which is never comfortable for me, and I had to extend my left arm into a tube-like gadget and wait. The scan took around an hour, focusing on the synovial fluid collection near my thumb. I actually fell asleep during the MRI, this made for two naps on Thursday. And if you follow my posts, you should know that I am not a napper, I am the worst at mid-day sleeping.
But, the plus side, I did get two new armbands to add to my collection. The collection has finally gotten long enough to hang from the top of a door to the bottom. And notice my new tattoo on my left forearm!!! Thanks to Asa of Black Rose Tattoo here in Lexington.
I did have a slight migraine today (Friday), and I found myself in and out of naps and writing. I try to take it easy when I know a migraine could be much worse. It could all be much worse I suppose.
SO I apologize for the delay in posting, I’ll try not to wait so long next time. – (Thank you and a special shout out to Cameron for noticing and checking in!)
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 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%!!
IBD News Today Column:
Welcome to ‘It Could Be Worse’ – A Column by Mary Horsley
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I talked to my doctor about Entyvio and all things considered, i’d really love to avoid taking it in the future. I’d take it if it comes down to the last resort. Got any side effects from it yet or are you lucky and respond well to the treatment?
Take good care!
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I have only gotten son slight nausea and migraine from the meds, so we added some pre-meds before the infusion. I’ll get the last of my loading doses tomorrow, so far no change in my body, sadly.
I’m sorry to hear that, just gotta keep trying and find something that works for you. What’s your future options? You have any other backup meds to try?
Medications can make things worse too, its kind of a trial and error thing. Life is a gamble:)
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Yeah we are working it out 🙂 if this fails I’ll probably get upped on Remicade and try that again before Stelara. I’ll get it worked out eventually I hope!
Have you taken into consideration that these medications are extremely toxic to the body? Sounds like some very powerful treatment:(
I know they can be toxic….thats why we tried a number of drugs before beginning the biologics. These medications are really the only option, any diet does not help me.
Yeah i figgure you knew that already, i just know what it did to me and i suppose i’m abit too afraid of medicines these days. Nessecary evil i suppose.
What kinda diet(s) have u tried?
How are you holdin’ up? Any positive news lately? I myself did a bone density test or what they are called in English. Not sure how it went but i hope all is good.