I am aware that CIU is not the worst health issue to have, and that many people deal with diseases far worse. I am not having a full on poor me pity party. That being said…
Does anyone else ever have that moment of “WHY IS THIS HAPPENING TO ME?”
I am not a bad person. I walk dogs at my local Humane Society, volunteer remotely for another rescue group, treat everyone with respect regardless if they own a building, clean it, or find shelter next to it. I’m pretty much an Earth child I don’t even eat meat or kill bugs (other than centipedes no thank you).
What higher powers have I pissed off to make me suffer through this? Hives on my toes now? And ears? What do I even wear to get groceries during a flare?
do you all have bad days too? Because today I don’t have the capacity to be all happy about the hives.
Linda Cooper Daubert I feel the same way 17 years of this can’t work anymore
Danielle Sheppard It may not be the worst, but it is pretty bad. I wanted to end my life. I even said “I wish it was cancer, so at least it might be curable.” It was the worst 6 months of my life, and nobody understood what I was going through physically or emotionally. There were many days that I would wonder why me. I was always so healthy, and I took pretty good care of myself. It is perfectly normal to have those days. It is hell dealing with this awful situation.
Ashley Rickey OMG! I tell my fiance all the time “I wish this was skin cancer because then there’s the chance it could be removed”. I thought I was so awful for saying that
Danielle Sheppard Me too. My mil had cancer the same time I had this. I felt bad for thinking that way, but at least she was cured. I am still on awful medication, that could kill me or cause awful side effects down the road. She is still doing well. God bless us both. Unfortunately, she is mad at me for not being there for her during her troubled time. 😔 I couldn’t even hold my babies.
Ashley Rickey Aw that’s heartbreaking she would hold that against you.
Karly Friedmann If it helps, I have said the same. Those I know that have had cancer are living life but I’m struggling and fighting to live with this. It’s painful. My is deep too. And I get electric type shocks all the time, I’m stressed out.
Danielle Sheppard I am on dapsone oral 100mg, it is keeping them suppressed. The plan is to start weaning off of it in April. My prayers have started the day we decided to do this. I hope all of you can find some relief. I have no clue how many of you have lived with this for years. There is no way. I would show up at the doctors, literally bawling. I’m glad they were an amazing support to me.
Karly Friedmann How long have you been on it? I have Mastocytosis. So mine comes with that.
Danielle Sheppard I’ve been on it since June 2017.
Christine Colardo Sally – I totally do – and I am sure probably close to 100% of sufferers do as well. I’ve only been on this CIU bus since 12/20/17. I ask myself those questions probably every day (especially when I wake up and can feel them coming). I wish I had someone who can relate to this to talk to – finding this group has been wonderful, but I would love to just go for coffee with someone who is going through what I am going through. But, I have yet to find anyone – then I feel guilty that I wish I could find someone – ugh its a vicious cycle, everything about CIU. If you ever need someone to vent to, feel free to PM me, because believe me I need it to at times. But I have to remind myself that this all could be worse. It’s the only way to cope because per my doctor, there is usually no rhyme or reason as to why this is happening.
Sally Edwards So I went a bit stalker and saw on your page that you’re in Florida. I’m in Honolulu. We literally could not be any further apart while still being in the US. I may very well PM you. My last several years have included CIU flare that took about 8 months to fully recede, broken foot/ankle that required physical therapy, had my ovaries removed last year (after a hysterectomy in 2013) and I thought for sure this year would be better. I was so wrong. This flare is going to send me over the edge mentally.
Christine Colardo Sally Edwards I would love to be able to communicate with somebody, bounce things off each other, cry if need be, Vent and not be judge – So anytime you would like to reach out feel free
Denise Warrell Chronic Ideopathic Urticaria. Ideopathic means “we don’t know why”. It sucks, but there it is. Autoimmune disorders are your body attacking itself. Hard speak now. Accept and find coping mechanisms. Host that pity party and then get on with your life. Feel the best you can, whenever you can
Kirasten Dasha I have bad days where I just want to throw a fit, be selfish and throw a pity party. It’s a terrible torturing condition. I don’t know how I manage to get through the bad days, but I do somehow. And I always try my best to be positive and thankful that it isn’t something far worse. I have small children, so I’m grateful for each day (most the time)
Rebecca Rose You’re not alone. I’ve been diagnosed with another auto immune disease. I spent last Friday crying all day asking my husband why me. I’ve had meningitis, a car accident that put me out for 2 months, urticaria and now ulcerative colitis in the last 4 years. I haven’t done anything “wrong”
Eileen Burns Hives go anywhere any time. No rhyme or reason. NO ABSOLUTELY NO part of your body is safe from this gawd awful disease. I’m one of the very lucky ones who is controlled by Xolair and my antihistamine combo. For nearly 3 yrs now. I have suffered from Cronic urticaria and Delayed Pressure Cronic urticaria for over twenty five years. And to answer your question yes we all get very bad down days. Especially when you are having a really bad flair. Days and nights are all intertwined, when you cannot sleep, you feel like shit and think WHY ME. We all ask the same question. Unfortunately there is no answer, no cure, and the vast majority of doctors don’t have a friggin clue what we have to endure daily. I’m on an enforced break from Xolair at the moment. Protocol dictates we must have a break from Xolair every 6th injection. I’m really lucky as I’ve had a full year of continuous injections. Saying that I’ve been on 6weekly for a year. So feeling nervous. I’m just coming up to my 6th week so will just have to take it one day at a time. I really hope you feel better soon and find a combo of antihistamines that suits you. Be brave. The group is a life line for everyone of us. Unfortunately we are all in need of someone who will listen and share.
Jennifer Carrigan I think the lack of sleep doesn’t help how you cope. My last flare up my husband found me lying on the cold tiles sobbing in the middle of the night. Even with 3 kids dependant on me I honestly wanted to end it
Danielle Sheppard I was right there with you. I like to think of myself as a pretty resilient, tough cookie. Yep.. Many times this had me bawling, and thinking this is no quality of life. Makes me emotional now, just thinking of how it had me broken. My kid’s couldn’t even touch me with me cringing. 😢 ((air hugs))