I have suffered with rare illnesses most my life

I just want to say thank you to everyone here. As much as I wish we didn’t have to suffer it’s very heartwarming to be able to connect with you on the struggles, pain and ughhhh the itch! For months I felt alone. I don’t know about you, but everyone, I mean EVERYONE, wanted to diagnosis me or give me their opinion. “You should do this” “Youre allergic to your animals”you need a healthier life style” “you you you”. I had never been in such a dark place. As time went by, things only seemed to get worse. Every episode got worse. Almost lost my job due to missed time, friendships faded, my boyfriend and I fell apart as I was unable to be a lover/friend when I couldn’t even get myself thru the day. I am not one of anxiety or depression.

I have suffered with rare illnesses most my life so it wasn’t new to me to have specialist and lots of bloodwork. But the pain and exhaustion from my body literally fighting itself took a tremendous part of me. They said pull up your boots and learn to live. Easier said than done when all I want to do is live in an oatmeal bath. Thankfully, with time and the support of family and all of you knowing many share this path, I am healing.

I am thankful for this because it’s taught me to appreciate any moment we have. Most important, I’ve learned deep fear, patience and how strong I am. I’m sorry for the long post but I wanted to share my journey. I truly hope that it gives hope for those who are in the dark. I know many ER visits, loads of pills, no relief, no triggers, fear of xolair, joint pain, swelling, no sleep. I will always be here for anyone who needs it. I wanted to post some pictures too as I feel so uncomfortable with anyone to see but I’m sure many can relate. Disclaimer:- I snuck one in of my cute doggie 🐶 ❤️❤️❤️❤️❤️ THANK YOU ALL FOR THE SUPPORT.


Julie Ravida Ely Thanks for sharing your story! We are all here for each other! Did Xolair help you? I just recently had my first dose.

Katherine Spallone Julie Ravida Ely xolair causes a lot of side effects for me in the beginning. After first few injections, it made my hives horrible! Joint pain was out of this world. Doctor said we could stop and put me on more immune depressing drugs that could cause depression. This was the high of my personal depression. I didn’t want harsher drugs so I continued hoping it would get better. And it has! I would definitely say stick with it even if at first it makes it much worse.

Brenda Jackson That was very touching & feel so much for everyone that suffers! I only take one tablet a day!! Couple of times I’ve actually forgotten to take it! But soon realise,when the itching starts!!! Mine has been almost a year now(I had shingles last April) the hives started in May!! I suffered all summer,before going to my GP in Sept. I almost positive that it was caused by,low immune after Shingles!& also Stress of my husband being diagnosed with Blood clot. It is good to hear,that we are not alone

Debbie Heaton Lovely. Im 3 yrs into xolair had my last round of 6 monthly shots 7 weeks ago i usually only last 4 or 5 weeks so this i a breakthorough. Iv had urtucaria and angiodema for 16 yrs only going into remission once in that time. Im hoping i can again. I felt every word you said and love this page as unless your a sufferer like us you have no idea. Hope we can all one day find a cure 

Linda Frigo McDaris I feel your pain. I’ve had hive for over 15 years. Xolair has been a blessing for me. Zyzal helps with allergies and if I should get a hive or two.

Renee Gandara I’ve felt the same way, my own family doesn’t understand how painful & frustrating living with hives really is. I haven’t found any treatment or pills that work for me.

Katherine Spallone Renee Gandara I take Allegra every morning and Zyrtec in the afternoon. Benadryl at night. I notice if I miss one dose, game over. I hate it. I’m still living daily with it but with xolair I think I’m getting close

Amanda America I have felt your pain and itch.. so glad you are healing. ❤ Much love to you hive sister

Cathy Lynn Spencer Prayers.

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