I just joined this page, and I feel as if I have been validated in the suffering caused by chronic hives. In my corner of the world, I am an oddity to most. I get comments like, “have you changed any detergents” or “do you have a food allergy?” As a kindergarten teacher, parents look at me with hesitation when angeoademia has shown up. Friends stop asking you out, because they are trying to be sympathetic. Should be a simple fix, but time has proven it is not.
I see your posts, and pictures that no one around me can understand. Not even my kids and husband fully understand the pain and fear wrapped up in this. They do not know how consuming hives are. However, I am so encouraged by all of you. Thank you for your voices. I am not alone.
Marybeth Kayne Perfectly said…suffering since August 2016. No cure in sight.
Dianne Doyle I had no idea how many people suffer from this. I felt really alone and dismissed in my battle and although I wouldn’t wish this condition on anyone it was relieving to see I wasn’t alone.
Sally Edwards YES Dianne! Me too!
Liz King Hot spotty hugs
Elaine Hyden I felt so alone until I found this page. I don’t always comment or post but I know I’m not completely alone in this world anymore. Sometimes we just need to rant. Tired of being stereotyped. I lost my insurance several years ago and I can’t afford treatment. Even the ER won’t do anything. They have never heard of my condition and they just see welts and sores on my face, neck, chest and arms. I get blisters with mine that wipe away with a wash cloth leaving an open wound to drain and crust. I have been “let go” from many jobs because of my flare ups. They say “come back when you heal up”.😂. It’s the florescent lights there making me flare up.
Liz King Can you approach one of the medical colleges?
I’m so sorry. There must be something you can do. Mine don’t weep through. Hydroxyzine is my rescue drug that I think is far cheaper than Xolair.
Elaine Hyden I am in the process of moving, I will be closer to one. That is my goal currently. This group has really been beneficial to me in learning others treatment and reactions. Very educational. For example, when I do get to a specialist, if I get Xolair, it could take up to 4 months before you see any progress. Prednisone dose pack has been the only thing up to this point that has worked. I learned from this page that Prednisone causes pot belly. So many other treatment options I’ve never heard of but there aren’t any specialists in my area I am moving from. There are many on here that have it much worse than I do. They are my heros. My heart and prayers go up for everyone on here sharing their stories and experiences. They give me more hope for my future than I’ve ever felt in my 42 years of life.
Sally Edwards Perfectly said, I nodded in agreement the entire time while reading. None of us are alone. Our suffering is real and this disease is horrendous.
Alaina Gandy Its been much better mentally for me since I’ve found this page. I’ve been suffering with CIU since I was 13- almost 16 years now. It definitely takes a toll on you in every aspect. I recently had really bad flare ups that lasted almost 6 weeks non- stop no matter WHAT I did. I was prescribed prednisone at a higher dose than I usually take because they were so bad. No one tells you just how bad steroids are for your immune system…but I sure found out. I ate some bad food the same week I was taking prednisone, and experienced side effects 10x worst. Long story short, I spent a week in the hospital because the steroid lowered my body’s ability to fight even the smallest bacteria
Shannon Moya it’s our hive home!! one I hate seeing new members join. this disease sucks
Catherine Isiminger Sandy So true…never had anxiety prior to CU. Now my heart starts racing when I hot.Pray every day to God to cure me.
Mandy Curtis As supporting family and friends are… you always feel like your annoying them with all your hive related issues
It’s a comfort being able to talk, get suggestions and just be supported from other people who know what your going through
My husband got bitten by some nasty mosquitos and was itchy and sore… I wasn’t happy about it but definitely let him know… that’s my life every damn day… he is awesomely supportive but still lol
Sally Edwards Mine did the same thing! They try to relate, “See look my arm itches too!” And I just want to throw stuff at him LOL.
Mandy Curtis Sally hahaha loveable jerks!! I wasn’t unhappy that he was itchy for a while lol …Might buy some itching powder for him… does that exist?!?
Sally Edwards Mandy I wouldn’t wish this on anyone…except maybe just for one day so they could know what it really feels like. I love my husband dearly but I basically have what I call “I hate your face” moments. Can you just let me have one day to be angry about this bs?! Damn Gina… (showing my age there sorry)
Mandy Curtis I’d wish it on my manager as I’m getting so much crap from him as I’m calling in sick so often as I’m a nurse and get them on my feet… 10hr shifts with swollen hives on your feet…. nope!!!!
Hahaha yep… fairly sure there’s a lot of people here who have them moments . hey just have no idea how debilitating this shit is… oh you’re itchy… suck it up… just wanna throat punch some people
Sally Edwards Mandy I am at work and am laughing SO HARD at your post…my hubs is in the Navy and the term throat punch gets used often…I thought it was just them LOLOL!!! Fortunately I work at a Snack Shack in a golf course so though my days are nearly 10 hours, I can sit between customers. On my hivey ass.
My favorite is when people say something like “Oh gurrl I know how you feel, one time I ate an orange and got this rash on my arms for, like, two hours.”
Mandy Curtis Hahaha have been told I swear like a sailor 🤣 throat punch is definitely one of my favs …I do nights so it’s a bit easier but all I wanna do when their on my feet is lay down and die… and make my husband provide me with a bad pan.. I had the just above my bum the other day… so fun
We should definitely invest in itchy powder