...who is always trying to get a good angle of the cool plants in the outdoor garden center.
I wanted to bring all of these home with me but my apartment balcony isn't big enough for all of the goth pretties.
I went looking for information on concussions and got so excited when I found this sub. I thought, "Ooh! My people!". I went to join and then realized I was already a member. 🙃
Sometimes I feel like I have the brain of a golden retriever.
Having a sweat test done later today. The testing center hasn't really told me anything about it. I've googled and read about it but I'd like to know if any of you have any advice on what to do or not do to prepare.
I'm really worried about having a negative result because I don't want to lose my access to Viokace. It's the only thing that's allowing me to sometimes eat. My pancreatitis is so bad and my GI specialist thinks I have a CF related disorder (if not "regular" CF). Literally nothing else makes sense (as a diagnosis).
I'm in my early 50s and was constantly sick as a kid (and as a teen and adult) but only seemed to go into this slow slide of pancreatic hell for about the last 20 years or so. I've been in and out of the hospital so many times in the last 3 years (17 times) that the ER receptionists all know who I am. I wait until I'm truly in so much pain I can't handle it anymore... then I head to the ER and they give me IV pain meds and fluids and then I go back home... with no additional info or answers.
I'm so sick of being sick. It's hard to plan to do anything because I never know when my pancreatitis will flare again. I never know when my lungs are going to be congested or my sinuses clogged. I never know when I'll be able to eat because when my pancreatitis is pissed off, I'm back to the liquid starvation diet.
It's depressing to have people say things like, "You're sick again?!" as though I'm using it as some sort of excuse not to be social. I want to go out to dinner with friends and just be... normal. It's hard to go to dinner and just watch everyone else eat. Some people in my circle have started to ask if I have an eating disorder because I've lost so much weight but I don't. I love food. I love to cook. And I love to go out to eat with friends and family.
I'm lonely, feel isolated, feel left out, and feel chained to the bathroom at home. I'm either throwing up or "throwing down", if you know what I mean.
If you have any advice or even ridiculous motivational platitudes, I'll take 'em. Really starting to lose hope.
Hi all!
It seems I'm being thrown in the CFTR-related disorder/atypical CF bucket for now until I have a sweat test done next week.
I've had pancreatitis and have been in the hospital 17 times in approx. 3 years because of it. I've lost an extreme amount of weight and I'm absolutely exhausted. I look like I'm dying and my quality of life sucks.
For those of you who have wondered (in previous posts) if I have other stomach issues causing the pancreatitis, no, I do not. I never drink, smoke, I've cut out the majority of fatty food (pancreatitis flares up), etc. I've had multiple endoscopies, CTs, MRIs, etc. My "case" was even taken by my gastro surgeon/specialist to present to his peers at a large gastro conference. They were all stumped too. The only (insignificant) thing they could even find is a very mild case of pancreas divisum- something which is fairly common in the general population. They do not feel it affects me much, if at all. At that conference, they suggested idiopathic or autoimmune pancreatitis as a possible cause but nobody considered CF. Now due to some of my genetic testing, they found a rare pathogenic CFTR gene and one "kind of crappy gene". My doctor now feels strongly that it is CF or a CFTR-related disorder.
Next week they're sending me to a sweat test. I'm not afraid of the test, what I am afraid of is if I "fail" the test, I'll be taken off of my Viokace. I've been on a lot of meds over the years to help with food digestion, including Creon, and Viokace is the only one which has helped. I'm finally able to eat small amounts of food and keep it down/in. I know it's an expensive med but I need it to eat.
In case anyone is wondering - CF or CFTR-related disorder truly lines up with all of my health issues as well as that of some of my family members. I've been sick with lung stuff, pneumonia, bronchitis, nasal polyps, ear infections, 8 ear surgeries as a kid, was on constant antibiotics as a kid and I am now almost totally deaf. I belief the deafness is likely due to the ridiculous amounts of ototoxic antibiotics I was on earlier in life.
Does anyone have any similar experiences or advice? I tried to search for Viokace info in this group and found very little info.
Thanks for any input or advice you might have!