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life according to crohn's

@lifeaccordingtocrohns / lifeaccordingtocrohns.tumblr.com

Well hi. *waves* I'm Hanna. I have Inflammatory Bowel Disease (IBD). I like to keep it real & down to earth about life with a bowel disease. I have a dark and twisty sense of humour sometimes. I'm honest. I talk about my depression/anxiety struggles because I believe that mental health is a seriously overlooked side of chronic illness. I want this to be a safe space for everyone to talk about their struggles and feel less alone in this life with chronic illness. 💕

Ways to Say “No” to Things.

Without saying “I’m sorry.” 1. “I wish I could help but my plate is pretty full right now.” 2. “I have said yes to too many things lately and I’m honestly overwhelmed at the moment.” 3. “I am not accepting any new tasks right now.” (I use this a lot and even though it is firm, I get positive responses because it’s relatable). 4. “I am over-committed right now, but I hope you find the help you need.” 5. “That’s my night to spend time with my family but thank you for asking me.” 6. “I’d love to but my schedule is packed right now.” 7. “That’s not a good day/time for me.” 8. “That’s not really my area, but thank you for thinking of me.” 9. “I’m honored but I can’t this time.” 10. “Thank you but this isn’t something I’m able to take on right now.” 11. “I am needed somewhere else that day, but thank you.” 12. “I am limiting my commitments right now.” 13. “I am honestly not able to dedicate the time right now.” 14. If you are disabled: “Spoons are low, so today is not a good day for this.” (try using “bandwidth” instead of “spoons” if you are not disabled so we can preserve the meaning of “spoons.”) 15. “That’s not a good fit for me, but (offer a genuine alternative).”

Really need to do an update of this blog. I’ve been AWOL for a while. I’m on a staycation at the moment so I shall plan to do this too :) but if you wanna hear more from me I’ll be tweeting a lot more... @lifeacctocrohns

I wish I could temporarily transfer my illness related pain to another human, just to see if I’m over reacting or if I really have just muted out most of the common pain.

ptolemaeusoter

People need to humble up and understand why us spoonies are pissed off. I am living here with just one roll as someone with Crohn’s, while they have six batches with like 24 rolls in them.

This is what freaked me out too. I was luckily able to get some but it did cross my mind as a worry that we might run out.

Random person: well this medication you're taking is just treating the SYMPTOMS of your disease, it's not actually helping you
Me, internally screaming: I have a CHRONIC illness. THERE IS NO CURE. I will take what I can get.

chronic illness skills:

-really good at getting blood drawn -sleeping -tv marathoning -doing everything in pain -know the best heating pads -will sit on the floor if there are no chairs -smarter than doctors sometimes tbh

Update

Hi guys! It’s been a while. Wanted to update you about something I have learned recently.

Apparently one of the common side effects of prednisone is developing what they call steroid-induced diabetes. I did not know this and had never been told about this being a risk, until I was diagnosed with diabetes on Nov 15. I possibly also had it earlier in the year when I was on prednisone in March.

It is hoped once I’m off steroids, the diabetes will resolve but we don’t know for sure yet. In the meantime I’m learning all about the world of being diabetic. It’s an adjustment and I’m still processing. I test my blood sugars 4-5 times a day, inject insulin once a day, and call the diabetes specialist nurse once a week to review my levels and adjust accordingly. This is complicated by the fact that I am tapering off prednisone so that changes the insulin I need each week. Exhausting.

So if you’re on prednisone and have a crazy dry mouth and excessive thirst, it could be diabetes! Make sure you get checked.

Hope you all are doing okay and have a wonderful holiday / end of year period. Mine is looking decidedly average so feeling a bit meh about that as well. Sigh.