I have been feeling way too bad about everything to post the past week, I was an itchy rashy mess. I don't think I will ever take prednisone again if all my symptoms come back with a vengeance. I look a bit better today with my ointments and benadryl but it's strange that on the bad days no amount of oinment and benadryl helps. It's like my skin is in a cycle and it doesn't matter what I do it will be hell for a few days and then I get a couple of days off and then it starts up again. It also seems to be affected by my menstrual patterns in addition to the rest of the bad days (like just before my period I get an extra painful face, neck and chest rash).
It didn't help matters that I had some milk in my coffee, I found grass fed milk at our whole foods and I've heard some people don't react with the same milk allergies to grass fed milk. I was wrong and even a bit made my face red, bumpy and itchy. I know it should have been common sense but I love milk in my coffee so much I was just hoping.
Sunday, July 3, 2011
Tuesday, June 21, 2011
little patches
Yesterday was my last day on the short course of prednisone and my chin and cheeks are already showing red patches. My upper lip is rough and rashy again too. The back of my neck itches but I'm not scratching anything for fear of making it worse. I am glad to be off it though because my teeth are starting to hurt ( a side effect after being on prednisone a few days). I will be taking some calcium too.
After googling the affects of cyclosporine on pregnancies I'm a little more scared about going on it.
After googling the affects of cyclosporine on pregnancies I'm a little more scared about going on it.
Monday, June 20, 2011
having a family
Eczema gets in the way of so many things in life, including having a family. I have always been worried about getting pregnant and what effects the allergy medications I take would have on a developing fetus. Not to mention my fear of passing on my allergies. Could a fetus thrive bombarded with Benadryl and Claritin-D? and back when I was suffering from chronic congestion, Could a fetus develop properly while the mother fights for oxygen? Despite those concerns, I have been trying unsuccessfully for years. A specialist said we were both fine and should be able to get pregnant although it's been so long I still think something is wrong. We could press the issue with fertility options but I keep thinking it's ok because I might not be meant to have a child when battling allergies year round. I am also open to adopting a child one day. I don't want to push for pregnancy when my body obviously isn't going to be the best environment.
I did get good news after the doctors' visit I mentioned a couple of weeks ago. He said that with my background and husband's diverse background there would be little chance that my child would have the short end of the stick in terms of allergies. After that visit I had a weight lifted from my shoulders and a positive outlook on a prospective pregnancy. I do hope it happens, and now I hope without apprehension since my Benadryl and Claritin-D use is decreasing also. I did ask my ob-gyn about this years ago and got a horribly dismissive response, since she didn't understand the scope of my problem. I'm glad I asked my allergist and he also said he had another patient conceive and remain on cyclosporin throughout her pregnancy so it's promising!
I did get good news after the doctors' visit I mentioned a couple of weeks ago. He said that with my background and husband's diverse background there would be little chance that my child would have the short end of the stick in terms of allergies. After that visit I had a weight lifted from my shoulders and a positive outlook on a prospective pregnancy. I do hope it happens, and now I hope without apprehension since my Benadryl and Claritin-D use is decreasing also. I did ask my ob-gyn about this years ago and got a horribly dismissive response, since she didn't understand the scope of my problem. I'm glad I asked my allergist and he also said he had another patient conceive and remain on cyclosporin throughout her pregnancy so it's promising!
Wednesday, June 15, 2011
Food Allergies and IGE levels
A dermatologist had once asked me to go gluten free for a week and see how I felt. I did and lost weight! Unfortunately my facial eczema would become terrible and later I learned most of the gluten free alternatives were big allergens for me. Regardless, I don't usually have digestive issues and gluten free was not going to help, I'm not intolerant I'm allergic (and yes that includes wheat).
I requested my first food allergy test May 2009 after explaining how my eczema flared with meals. My allergist went over the devastating results with me too briefly. When I asked for guidance on what I could eat, he essentially said I was highly allergic to so many foods I couldn't avoid them all. He told me to avoid nuts and regardless of the results to chart the foods I had the worst reactions to and avoid those. So my current NEVER EVER list (though I have regretfully cheated once in awhile to my own detriment) is as follows: Tomatoes, Apples, Peaches and Milk. Those four foods are like poison ivy to my face! I used to cheat with milk for half and half in my coffee but it was undeniably irritating and I now use Goat Milk. I don't avoid all milk products though since I didn't test too badly with cheese, thank God!
My IGE level was really high at 2,587 IU/ML and the allergist recommended xolair shots to lower IGE and help the eczema and at the time asthma. It sounded like the answer to my prayers but it's beyond expensive and the insurance would not cover it. Everyone's dosage is different but I think for me it would have been around $15,000 a year and assistance programs could not help me because my income wasn't low enough. IGE, immunoglobulin E is something I never heard and after googling I was sure I had hyper IGE Syndrome. I do not and that is just a manifestation of my cyberchondria, thanks to eczema I have become somatopsychic (kind of the flip side of psychosomatic except my body's ailments affect my mind). I most certainly do not have hyper IGE syndrome and my heart goes out to those who do, it's a horrible disease. It's now June 2011 and my IGE level is down, hooray! Here are some scans of my first food allergy test:
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page 3
I requested my first food allergy test May 2009 after explaining how my eczema flared with meals. My allergist went over the devastating results with me too briefly. When I asked for guidance on what I could eat, he essentially said I was highly allergic to so many foods I couldn't avoid them all. He told me to avoid nuts and regardless of the results to chart the foods I had the worst reactions to and avoid those. So my current NEVER EVER list (though I have regretfully cheated once in awhile to my own detriment) is as follows: Tomatoes, Apples, Peaches and Milk. Those four foods are like poison ivy to my face! I used to cheat with milk for half and half in my coffee but it was undeniably irritating and I now use Goat Milk. I don't avoid all milk products though since I didn't test too badly with cheese, thank God!
My IGE level was really high at 2,587 IU/ML and the allergist recommended xolair shots to lower IGE and help the eczema and at the time asthma. It sounded like the answer to my prayers but it's beyond expensive and the insurance would not cover it. Everyone's dosage is different but I think for me it would have been around $15,000 a year and assistance programs could not help me because my income wasn't low enough. IGE, immunoglobulin E is something I never heard and after googling I was sure I had hyper IGE Syndrome. I do not and that is just a manifestation of my cyberchondria, thanks to eczema I have become somatopsychic (kind of the flip side of psychosomatic except my body's ailments affect my mind). I most certainly do not have hyper IGE syndrome and my heart goes out to those who do, it's a horrible disease. It's now June 2011 and my IGE level is down, hooray! Here are some scans of my first food allergy test:
page 3
Shots help
Due to my allergy shots I feel like my environmental allergies have been greatly reduced though I haven't been retested. I just feel great when I'm outside, I feel comfortable at parks, on trails and in the garden. I don't get sneezy, congested or itchy. The only time I need to be careful is to not expose skin that currently has steroid cream to the sun and if I'm covered in lotion try not to be where dirt is blowing around or else it will stick on me and get itchy. Even sweaty activity feels ok, as long as there is a breeze so I don't stay sweaty. I think outdoor exposure helps me stay calm too. Well environment feels great but I still have some contact dermatitis, like I could never wear wool and some upholstery is too itchy to sit on.
So, right now the biggest problem is food. I get an itchy face after most meals, though it was worse before the shots. Unfortunately, there are no shots for food allergies. I don't know why or how the mechanics behind it would be different?
So, right now the biggest problem is food. I get an itchy face after most meals, though it was worse before the shots. Unfortunately, there are no shots for food allergies. I don't know why or how the mechanics behind it would be different?
happy day :)
I'm feeling so good today (on third day of prednisone) and after a night of wet pajamas my skin is healing and though the rough patches are still on my arms they are not as noticeable. I went out for lunch with short sleeves and felt great. This is me right now:
I'm just trying to shut out the apprehension and fear of the rebound I might get after I'm done with the prednisone. I'll try to stay positive and moisturized.
I'm just trying to shut out the apprehension and fear of the rebound I might get after I'm done with the prednisone. I'll try to stay positive and moisturized.
Tuesday, June 14, 2011
pictures
So this is a picture of me doing so well I can wear a tank top dress. I was also relaxed due to being on vacation. Unfortunately, I was also on a strong course of prednisone because I didn't want to look terrible and cover up on my summer vacation. :
This is a picture of me at my worse. I was feeling so bad for myself and just wanting to die. This turned out to be a staph infection of my allergy induced eczema. My eczema was out of control from foods and the stress of a big family visit didn't help. It calmed down the day I started a course of antibiotics. I blocked them out but my eyes were almost swollen shut. :
This is a picture of me last month and basically what I usually look like with my butterfly face rash that makes strangers ask me if I've been tested for lupus. :
This is a picture of me at my worse. I was feeling so bad for myself and just wanting to die. This turned out to be a staph infection of my allergy induced eczema. My eczema was out of control from foods and the stress of a big family visit didn't help. It calmed down the day I started a course of antibiotics. I blocked them out but my eyes were almost swollen shut. :
This is a picture of me last month and basically what I usually look like with my butterfly face rash that makes strangers ask me if I've been tested for lupus. :
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