
This.
Things chronically ill people should never tell them selfs:
• It could be worse
• I’m fine… Really…
• Its all in my head
• I wish I was normal
• At least it’s not *insert other illness”
• My life is basically over now
• I will never achieve my goals
• Everything has to change
We all have the great ability to adapt to new surroundings so take each day one step at a time and stay strong.
Well, that’s the steroids over and done with… until next time. I’m glad because the bloating will hopefully stop and I won’t have to take so many horrible tasting pills every morning; but also not because it means I’ll very likely flare up again as I haven’t been started on anything to replace the azathioprine, which was meant to replace the steroids.
I’m already showing signs of a flare; my stomach hurts every time I eat, regardless of what it is, and bathroom dashes are becoming more frequent. I really hope they call back with a solution soon.

requested by cat-astrophieee
Sure is.
This made me smile. I think I needed it.

Every day…
I have to share the awesome app I use to negate this issue!
it’s called Medisafe and it’s a free app available in the app store or on google play and it allows you to input all your medications and:
-choose the shape, color, and dosage of each medication (including indicating if it’s an injection or a pill or an inhaler)
-notate the dosage and/or # of pills
-each time of day/night it needs to be taken
-add food or other special instructions
-schedule refill reminders
-add a med-friend (someone who will be notified if you forget to take it!)The interface is great and i’ve found it very easy to use. You can also add meds to take “as needed” so you can indicate that you’ve taken an out-of-time painkiller or booster pill etc.
When it’s time to take your pills it uses the text-notifcation noise on your phone to alert you- so it’s lowkey, but (usually) unmissable. When it’s time, you have the option to snooze, dismiss, or take pills. OR you can just shake your phone to indicate that you’ve taken them (I usually either snooze or shake the phone).
It tracks your progress too and you can export yourself an excel spreadsheet of your pill taking to give your physician etc if needed.
You can set the snooze time manually, the maximum number of alarms, all kinds of things- you can set your own alert sound too if you don’t want it to use your text-notification.
.
I am TERRRRRRRIBLE about remembering pills (seriously, I forgot for 3 weeks). I haven’t missed a dose since I started using it and it’s fantastic.
S I G N A L B O O S T
I know a lot of folk have trouble with this so this could be super helpful!
resources!
I got this app, it works really well! There a few minor issues but easy to get your head around, has really helped me!
Will be trying this. I keep forgetting to take my evening meds.
It’s:
Fatigue. Underweight. Weight gain. Times with food restrictions. Blood in the wrong place. Joint pain. Arthritis. Doctors appointments. Thousands of toilets. Pain. Cramps. Lack of understanding. Fighting every day. Frustration. Medication. Immunosuppression. Side effects. Hair loss. Malnutrition. Hospitals. NG tubes. Endoscopy. Needles. Prep. Surgery. Recovery. MRI. CT. Gastroenterology. Rheumatology. Nausea. Bloating. Supplements. Infusions. Decisions. ER. Dehydration. Diarrhea. Constipation. Infections. Abscesses. Kidney stones. Enemas. Fever.
But it’s also waking up every day and being stronger than all this problems.
I can’t wait to go to bed. I had a better afternoon but my stomach is still feeling dodgy. I went out with my work colleagues this evening for a goodbye meal for my manager who is leaving and so far things are ok but I think I’ll regret having broken my GF diet to have doughballs (we went to an Italian restaurant so obviously no gluten free menu). I only had salad as my main though so I might be ok. Fingers crossed!
I’m halfway through my working day and I’ve just had lunch (half a fruit and chocolate smoothie and one of my GF brownies). I’m tired and I’m pretty certain I’m going to be flaring soon; my stomach has been cramping and I’ve had two dashes to the bathroom already. I’ve called the hospital, but because it’s the weekend, no one is there to answer the phone, and I can’t call the helpline because they won’t call back until Tuesday! I think I’m just going to have to ride it out and hope I don’t go nuclear before Monday.