Had an appointment with my GI and now I'm getting my Entyvio infusion (round 9). Doctor was concerned with my liver enzymes levels from my blood work last week. One number was twice as high as it is supposed to be and one number is four times as high as it's supposed to be. Yeesh! Likely form the Entyvio as we have seen a steady increase over the last few months, especially after increasing the dose. Before making any medication adjustments we have decided to go in for another colonoscopy and an upper GI scope. We had previously discussed the possibility of me not only having Crohn's, but maybe IBSD or possibly Celiac Disease. This will help us determine whether or not my Crohn's is active and if we could be dealing with one of these other things. He did happen to say that I've had a harder time than most getting my disease under control. In my head I was thinking, dude have you met me?! #special Haha! Along with the colonoscopy and scope, he is ordering a full liver work up. We discussed the possibility of me having something called Autoimmune Hepatitis. Hmm... 🤔 gonna have to do some research on that one. I go in next Monday for both procedures. #shebelievedshecouldsoshedid#remission#crohnsdisease#ibdcantstopme#arthritis#spoonie#spooniesunite#spoonieforlife#invisibleillness#sickbutinvisible#chronicillness#ibd#arthritissucks#autoimmunedisease#ibdawareness#IBDvisible#entyvio
Having an ACTH stimulation test this morning. All going well so far 😀This will show if my body produces enough of its own cortisol, so I can get completely off steroids for good! Would love to be free of these long term!
Traveling to the hospital early this morning I got a glimpse of normal life from the car window. I watched people hurrying to work, getting on buses and going to get their morning coffee. ☕️ It made me reflect about how much I miss being part of society in that way, as I am mainly at home most of the time. So I was actually glad I was up and about and able to people watch today 😀
I miss being able to work so much, being part of something and feeling a sense of purpose.
Society seems to define us by our jobs, I find it difficult at times when asked what I do! But for so many of us with Chronic illnesses, trying to get well is a full time job! In between hospital appointments, pacing, trying to make sure we take our medication throughout the day, eating well, taking supplements, resting, blood test, injections and other scans etc! There is no time or energy left!
So for now I'm focussing on recovery and healing as my job 💫 Hopefully the rest will come later. 😀 x
Went to go see an ENT last week because I have been feeling like it was hard for me to get air in. As a child I had a tumor removed from the same location, so naturally he wanted to take a look. Not something I recommend, especially because apparently my septum is extra curvy and abnormal. 🙄 Why not? Have you met me?! Haha! I didn't think he was ever going to get the camera through there! A camera up your nose and down your throat is not a fun sensation! The extra curviness causes the airflow to bounce all around and has caused these things called Lingual tonsils (who knew we had those?!) to become inflamed. Which in turn is restricting air. No wonder I feel like I can't breathe! Apparently the Lingual tonsils assist the immune system in the production of antibodies in response to invading pathogenic bacteria or viruses. Gee, wonder why I'm having a problem with that? #crohnsdisease Explains why I've been so sick lately. So for the next two weeks I'm on a concoction of saline solution, Afrin nose spray plus Mucinex then recheck to see if the inflammation is under control. If not, I might need surgery. 🤦🏼♀️ I guess the silver lining is, at least my tumor didn't grow back! 🙌🏼 Oh, and GP nurse called today, so along with being vitamin B-12 deficit, once again my vitamin D levels have dropped. Back on prescription strength vitamin D for three months. #crohnsdiseaseisstupid *** ***
These two pictures are so true and despite a lot of the time not wanting to look too sick, I wish I would be able to outwardly show just how awful we feel with Chronic invisible illnesses! The pain is so easily disguised as we proceed through life, at many times unacknowledged by others that we are unwell and suffering. I am often in extreme pain, have terrible shattering fatigue and exhaustion and am too dizzy to stand, yet can look perfectly well to others! This can lead us to continue to tell the Wellness story and portray to those around us that we can manage to do more than we should, only leading to further symptoms and longer post exertional malaise (PEM or payback)
The second photo is of me on holiday having a meal, lots of people have said I look so well on this picture,as I was on steroids for Crohn's disease the previous years and had piled on the pounds and gained a large moon face 🌙 As this had however disappeared at this time they automatically came to the conclusion I looked well, therefore I was better! It couldn't have been further from the truth! I felt like crying during this meal, was in so much pain and just wanted to sleep for a week, I don't know how I made it there, but was in bed for days afterwards.
I learnt therefore we have to be honest with how we feel and that there is no point to push ourselves beyond our limits to please others! We must put ourselves first in order to recover! Easier said than done I know! Love to all who are struggling with invisible illness 😌Stay strong 💪🏽 #invisibleillness#sickbutinvisible#chronicillness#chronicpain#crohnsdisease#chronicfatigue#dontpushtoohard#pacing#putyourselffirst#mentalandphysicalenergy#selfcare#dontjudge#thingswillgetbetter#staypositive#sharinghelps#lookscanbedeceiving