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.
Tuesday, June 21, 2011
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:
page 2
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. :
Eczema Fashion
Eczema killed my fashion sense. Ten years ago, if you told me I would run around town with no makeup and long sleeved shirts flipped inside out I would have been aghast. Now, when the crease of a clothing's seams can feel like itchy razor blades, I usually flip it inside out when possible. I also like to cover because I itch less when covered up. I also prefer crew necks since my chest is so sensitive that v-necks and scoops have necklines that fall too low and irritate me more. Plus, I don't exactly want to show off my bumpy red chest skin. Pants are a constant to my style, even though we frequently hit temperatures in the 100's here. Inside out cotton leggings feel like heaven!! It's no fun being the out of style frumpy girl when everyone is wearing cute dresses and shorts. I do get to wear skirts/dresses/shorts when I'm on serious corticosteroids but that might last a week. Still, I take advantage of those days, insisting on eating out, meeting up with friends and wearing jewelry that normally just irritates me. I practically dance in the street, arms extended smiling face to the heavens...and then by the next week it's back to the uglies. I was never an envious or coveting type of person growing up, in fact I'm usually happy just to see others happy and never get jealous. I can't say that so much nowadays, I am jealous of every single person I see, age, race, income, weight, etc. I wistfully watch people walking around wishing I had their beautiful beautiful beautiful skin. Everyone has beautiful skin, except me.
I also stay away from dark clothing, no black! I prefer white because the facial/chest/shoulder flaking can get out of hands some days. It looks like an explosion of dandruff even though my scalp has not been flaky lately. Not that face flakes are any less off putting.
I also stay away from dark clothing, no black! I prefer white because the facial/chest/shoulder flaking can get out of hands some days. It looks like an explosion of dandruff even though my scalp has not been flaky lately. Not that face flakes are any less off putting.
Monday, June 13, 2011
What works
So for a break from the complaints and rants here are some things that I know help ease the eczema pain, at least for me.
1. Aquaphor (no substitutes, any other lotion by Eucerin doesn't work and petroleum jelly starts to burn after using it too long)
2. Remain calm, stress aggravates everything (unfortunately, this one is impossible at times)
3. Wet Pajamas
4. Wear sunscreen when out in the sun
5. Avoid Tomatoes and all tomato products (delicious marinara sends my skin into a tailspin)
6. Avoid Cow's Milk (took me too long to realize a rash came on soon after a bowl of cereal)
I just thought of these things I KNOW to be true for me but I'll edit/add more as I think of things.
Snake Oil or Emu Oil
When you have such visible eczema many people will give you unsolicited advice.
"Emu oil, it will cure everything!"
"I use lubriderm everyday and so I never get like that, just try it, trust me."
"Please what do you have to lose, just put on jergen's lotion everyday for a week"
"One word...Probiotics"
"I have eczema too [points to little red dot] and I just use Avon blah blah blah"
"My friend said Dead Sea Salts will cure it all, it's an amazing miracle, please I'll buy it for you just try it out" I did, many times and it did nothing
"Go to the beach" Yes, I do love the beach :-)
"I heard some kids take baths with a bit of bleach" tried that, too drying
"Change your detergent, most are too harsh." as if I haven't done that already like years ago
"Drink more water! If you just drink water all day it will hydrate and flush out the toxins"
"The most soothing thing will be an oatmeal bath, get Aveeno it's hypoallergenic." OATMEAL BATH?!, considering oats are in the highest category of foods I'm allergic to, I might as well bathe in cat pee with extract of poison ivy drops sprinkled in.
"Have you had your skin's PH tested?"
"Rinse your eye lashes with johnson's baby shampoo"
Mint leaves, evening primrose oil, tanning (this was even prescribed to me and I had UV treatments at a derm's office for months but quit after so many long calls with the insurance who did cover it but I had to go through the process of calling and fighting for my insurance coverage with each bill), alkaline water, apple cider vinegar, tea tree oil, honey, vitamin e, cover up, uncover, stay cool, olive oil, coconut oil and so on. People have mentioned so many things I can't remember them all. Surprisingly, I don't mind the advice one bit. Well all but the forcefully put advice from people all but asking me to sign my name in blood that I will follow their suggestion. Otherwise, I love advice and once in a blue moon hear something new. I agree that it doesn't hurt to try home remedies and some doctors even make suggestions. In fact, last week a friend suggested I try Bentonite clay and I bought some yesterday. I haven't opened it but I'll post my results to the blog when I do.
Next, are all the remedies I hear advertised and find on my endless google searches. I'm sure doctors just love patients who start sentences with "I read on google that...". ;) I've read about cures like colloidal silver, turmeric, tars, sulfur applications, garlic pills (another big allergen for me) and being breastfed (too late, lol). There are newly marketed lotions "calming creams" targeted to dermatitis and eczema problems and I've tried many of those (before I knew of my oat allergy) and ended up much much itchier.
Lately, many sites are touting macrobiotic, raw and alkalinizing alkaline diets and they sound like an intriguing panacea, all the rage with many disorders. One thing all these diets recommend is limiting sugar and it's sooo difficult for me (I love baked goods) but I do notice a difference when I cut back so if you have eczema and the willpower, cut out the refined sugar. I've also read that taking alka seltzer or baking soda diluted in water will calm eczema because it's a product of not being ph balanced (it did not help me one bit). On the flip side, I've read that I need to take Hydrochloric acid pills to help me digest better so the "leaky gut syndrome"(don't know if that's a real thing) would be ameliorated. After getting over my disbelief I even tried that with what might have been great results or just good eczema days, it's hard to tell what works but I won't discount the HCL pepcid pills. I was initially shocked and swore I wouldn't try what I knew since childhood was bad news. In the show Breaking Bad Walt and Jesse used HCL to disolve a body but Jesse put it in the bathtub and it ended up eating through the floor causing the whole tub to fall through to the first floor, why would someone ingest that? Well, HCL is in your stomach acid and obviously the pills are encapsulated and much weaker solutions. I would recommend intense researching before taking it because there are guidelines, like eating it with a protein heavy meal. I thought it could have been helpful but stopped after a few days since I asked my doctor and he said to stop taking poisons, so I stopped.
I also read the book Slow Death by Rubber Duck and found information about mercury poisoning from amalgam fillings to cause rashes among a slew of other problems. I had about 5 or 6, eek! Surely this was my big problem so as it is common with people inflicted by chronic disease, I researched and obsessed. I found arguments on both sides, those supporting amalgam fillings claimed amalgam replacement was a money making scheme by unscrupulous dentists and that they were 100% safe. I also discovered that many countries have outlawed mercury fillings and rashes are a sign of mercury poisoning. After a year of obsessing about the high price of replacement for something that could be harmless weighed against a possible answer to my problems I decided to replace them. My results? I had it done early April and the dentist (an amalgam replacing expert) said it could take months for my body to detox. Obviously my eczema didn't disappear overnight but I did notice an increase in mental clarity the next week and ever since. It was like my thinking just had a bit of fog before and the fog had dissipated. I didn't even know it had been a problem. It could have been the supplements he told me to take after or the mercury removal. Either way I'm glad I did it and if next year I'm eczema free I'll know it worked. If not I won't be stressing and obsessing so much about should or shouldn't I?
"Emu oil, it will cure everything!"
"I use lubriderm everyday and so I never get like that, just try it, trust me."
"Please what do you have to lose, just put on jergen's lotion everyday for a week"
"One word...Probiotics"
"I have eczema too [points to little red dot] and I just use Avon blah blah blah"
"My friend said Dead Sea Salts will cure it all, it's an amazing miracle, please I'll buy it for you just try it out" I did, many times and it did nothing
"Go to the beach" Yes, I do love the beach :-)
"I heard some kids take baths with a bit of bleach" tried that, too drying
"Change your detergent, most are too harsh." as if I haven't done that already like years ago
"Drink more water! If you just drink water all day it will hydrate and flush out the toxins"
"The most soothing thing will be an oatmeal bath, get Aveeno it's hypoallergenic." OATMEAL BATH?!, considering oats are in the highest category of foods I'm allergic to, I might as well bathe in cat pee with extract of poison ivy drops sprinkled in.
"Have you had your skin's PH tested?"
"Rinse your eye lashes with johnson's baby shampoo"
Mint leaves, evening primrose oil, tanning (this was even prescribed to me and I had UV treatments at a derm's office for months but quit after so many long calls with the insurance who did cover it but I had to go through the process of calling and fighting for my insurance coverage with each bill), alkaline water, apple cider vinegar, tea tree oil, honey, vitamin e, cover up, uncover, stay cool, olive oil, coconut oil and so on. People have mentioned so many things I can't remember them all. Surprisingly, I don't mind the advice one bit. Well all but the forcefully put advice from people all but asking me to sign my name in blood that I will follow their suggestion. Otherwise, I love advice and once in a blue moon hear something new. I agree that it doesn't hurt to try home remedies and some doctors even make suggestions. In fact, last week a friend suggested I try Bentonite clay and I bought some yesterday. I haven't opened it but I'll post my results to the blog when I do.
Next, are all the remedies I hear advertised and find on my endless google searches. I'm sure doctors just love patients who start sentences with "I read on google that...". ;) I've read about cures like colloidal silver, turmeric, tars, sulfur applications, garlic pills (another big allergen for me) and being breastfed (too late, lol). There are newly marketed lotions "calming creams" targeted to dermatitis and eczema problems and I've tried many of those (before I knew of my oat allergy) and ended up much much itchier.
Lately, many sites are touting macrobiotic, raw and alkalinizing alkaline diets and they sound like an intriguing panacea, all the rage with many disorders. One thing all these diets recommend is limiting sugar and it's sooo difficult for me (I love baked goods) but I do notice a difference when I cut back so if you have eczema and the willpower, cut out the refined sugar. I've also read that taking alka seltzer or baking soda diluted in water will calm eczema because it's a product of not being ph balanced (it did not help me one bit). On the flip side, I've read that I need to take Hydrochloric acid pills to help me digest better so the "leaky gut syndrome"(don't know if that's a real thing) would be ameliorated. After getting over my disbelief I even tried that with what might have been great results or just good eczema days, it's hard to tell what works but I won't discount the HCL pepcid pills. I was initially shocked and swore I wouldn't try what I knew since childhood was bad news. In the show Breaking Bad Walt and Jesse used HCL to disolve a body but Jesse put it in the bathtub and it ended up eating through the floor causing the whole tub to fall through to the first floor, why would someone ingest that? Well, HCL is in your stomach acid and obviously the pills are encapsulated and much weaker solutions. I would recommend intense researching before taking it because there are guidelines, like eating it with a protein heavy meal. I thought it could have been helpful but stopped after a few days since I asked my doctor and he said to stop taking poisons, so I stopped.
I also read the book Slow Death by Rubber Duck and found information about mercury poisoning from amalgam fillings to cause rashes among a slew of other problems. I had about 5 or 6, eek! Surely this was my big problem so as it is common with people inflicted by chronic disease, I researched and obsessed. I found arguments on both sides, those supporting amalgam fillings claimed amalgam replacement was a money making scheme by unscrupulous dentists and that they were 100% safe. I also discovered that many countries have outlawed mercury fillings and rashes are a sign of mercury poisoning. After a year of obsessing about the high price of replacement for something that could be harmless weighed against a possible answer to my problems I decided to replace them. My results? I had it done early April and the dentist (an amalgam replacing expert) said it could take months for my body to detox. Obviously my eczema didn't disappear overnight but I did notice an increase in mental clarity the next week and ever since. It was like my thinking just had a bit of fog before and the fog had dissipated. I didn't even know it had been a problem. It could have been the supplements he told me to take after or the mercury removal. Either way I'm glad I did it and if next year I'm eczema free I'll know it worked. If not I won't be stressing and obsessing so much about should or shouldn't I?
The NEW plan to combat eczema! (delayed until further notice)
So now I'm going to start taking cyclosporine every day, something that my allergist says worked on other patients with worse problems. WORSE?? Ok, sometimes when you have a bad problem that weighs on your mind every hour of every day you tend to think you are the only one on earth who carries the burden. I admit to giving in to the poor me, poor me mantra among other mental disorders. Although, when asked how I'm doing I stay upbeat with friends, just beat myself up internally because of my personal aversions to complaining. Hopefully this blog will help me unload the crap.
Back on the subject, so I was to start cyclosporine some time this week (after some preliminary tests) but yesterday evening I had a severe flare up all over. So I took in my new RX for cyclosporine after a call with the go ahead and the pharmacist tells me how horrible I look and what can be done and this medicine is for transplants and you're rash is dark red and you should get a cortisone shot and oh bless your heart you poor poor thing... Well I call the PA at the allergist asking for something stronger like a shot or prednisone before I start the cyclosporine stuff and he calls in an prednisone rx (not too much just 4 days of 40mgs followed by 4 days of 20mgs). When I go in to pick that up a new pharmacist gives me the "I feel so whole heartedly sorry for you" look and wishes me well.
Oh sweet sweet prednisone, how do I love thee? Let me count the ways... I know people say it's essentially selling your health's soul but it works SO WELL and I've always had only side effects that border on euphoria along with a skyrocket of productivity. Not to mention the self esteem that goes along with presentable skin and the sleeplessness that some complain about is negated by the peace I receive from a break in painful discomfort so I sleep soundly. Unfortunately, the PA acts like Mr. Krabs and is so stingy he makes me take long breaks from feeling comfortable. So when I called in today he said ok only because the last time I had some was in October (not that I haven't asked for it since then, I just get denied or given alternatives, poo). I doubt this dosage will have me starring in my own musical but maybe it will help this painful and itchy rash calm down and I won't scare gawkers.
The second visit pharmacist who handed me the prednisone asked me if I've taken it before (I tried to hide the hearts in my eyes) and warned me that it could hurt my bones (I've had a bone density test a couple of years ago with perfect results and I don't drink coke but I kept that to myself). I just nodded until she said it could also make me much angrier in mood. I could not contain my smile but continued nodding. It just makes me laugh because I'm sure if there were a pill that makes people angry every person who has ever known me would beg me to take it. I'm the poster child of passivity. I see aggression in most other people and it unnerves me but I've had others admit my lack of aggression is unnerving. So now I'm on prednisone (effects yet to be felt, though it's only been an hour). As much as I worship prednisone I am glad and appreciative my doctors and PA are cautious with it because if left to my own devices I would end up as the pharmacist and so many others have described looking like the moon faced hunch back with melted organs, crumbled bones and skin thinned to non-existence. Really this drug is so demonized, I do get it. So maybe the cyclosporine will be a good alternative afterwards. Has anyone (if ever I get a reader) had or heard of eczema success with cyclosporine?? I'm so excited (or maybe it's the pred kicking in).
The reason for the delay really has been a problem I've had with doctors. I look great for my appointments, well as great as one can look with bloody scabs, hints of old rashes and dry patches. Then a day or two after my appointment I end up with a tomato red face, butterfly rash and strangers suggesting I get checked for lupus (I have been because even doctors had the concern, test was negative) and asking if I ran into some poison ivy. So the doctor heard me tell him how horrible I can look but probably assumed I exaggerate (although he has seen me at some terribly low points so gives me the benefit). I really was looking good last week, I was thinking that some of my more outlandish self treatments were working...see next post.
Well this is the new plan from the allergist but from my dermatologist visit, she has prescribed a sulfur ointment for my face when it gets overly flaky. I have that at hand but I'm currently more raw and red than flaky (ugh, the terrible never ending cycle) so I'll post my experience when I get around to trying that.
Back on the subject, so I was to start cyclosporine some time this week (after some preliminary tests) but yesterday evening I had a severe flare up all over. So I took in my new RX for cyclosporine after a call with the go ahead and the pharmacist tells me how horrible I look and what can be done and this medicine is for transplants and you're rash is dark red and you should get a cortisone shot and oh bless your heart you poor poor thing... Well I call the PA at the allergist asking for something stronger like a shot or prednisone before I start the cyclosporine stuff and he calls in an prednisone rx (not too much just 4 days of 40mgs followed by 4 days of 20mgs). When I go in to pick that up a new pharmacist gives me the "I feel so whole heartedly sorry for you" look and wishes me well.
Oh sweet sweet prednisone, how do I love thee? Let me count the ways... I know people say it's essentially selling your health's soul but it works SO WELL and I've always had only side effects that border on euphoria along with a skyrocket of productivity. Not to mention the self esteem that goes along with presentable skin and the sleeplessness that some complain about is negated by the peace I receive from a break in painful discomfort so I sleep soundly. Unfortunately, the PA acts like Mr. Krabs and is so stingy he makes me take long breaks from feeling comfortable. So when I called in today he said ok only because the last time I had some was in October (not that I haven't asked for it since then, I just get denied or given alternatives, poo). I doubt this dosage will have me starring in my own musical but maybe it will help this painful and itchy rash calm down and I won't scare gawkers.
The second visit pharmacist who handed me the prednisone asked me if I've taken it before (I tried to hide the hearts in my eyes) and warned me that it could hurt my bones (I've had a bone density test a couple of years ago with perfect results and I don't drink coke but I kept that to myself). I just nodded until she said it could also make me much angrier in mood. I could not contain my smile but continued nodding. It just makes me laugh because I'm sure if there were a pill that makes people angry every person who has ever known me would beg me to take it. I'm the poster child of passivity. I see aggression in most other people and it unnerves me but I've had others admit my lack of aggression is unnerving. So now I'm on prednisone (effects yet to be felt, though it's only been an hour). As much as I worship prednisone I am glad and appreciative my doctors and PA are cautious with it because if left to my own devices I would end up as the pharmacist and so many others have described looking like the moon faced hunch back with melted organs, crumbled bones and skin thinned to non-existence. Really this drug is so demonized, I do get it. So maybe the cyclosporine will be a good alternative afterwards. Has anyone (if ever I get a reader) had or heard of eczema success with cyclosporine?? I'm so excited (or maybe it's the pred kicking in).
The reason for the delay really has been a problem I've had with doctors. I look great for my appointments, well as great as one can look with bloody scabs, hints of old rashes and dry patches. Then a day or two after my appointment I end up with a tomato red face, butterfly rash and strangers suggesting I get checked for lupus (I have been because even doctors had the concern, test was negative) and asking if I ran into some poison ivy. So the doctor heard me tell him how horrible I can look but probably assumed I exaggerate (although he has seen me at some terribly low points so gives me the benefit). I really was looking good last week, I was thinking that some of my more outlandish self treatments were working...see next post.
Well this is the new plan from the allergist but from my dermatologist visit, she has prescribed a sulfur ointment for my face when it gets overly flaky. I have that at hand but I'm currently more raw and red than flaky (ugh, the terrible never ending cycle) so I'll post my experience when I get around to trying that.
corticocycloxyspiekenshpelzoid
What meds do I take? Allergy shots have really helped me. I dutifully went once a week for shots in each arm for a year with NO improvement. Then at just a year it's like they kicked in and my environmental allergies were reduced to the point of a normal person. In fact I realized the shots were working this past January when I could breathe without problems and family and friends around were having bad allergies. I probably took a Claritin-D 24 and one or two benadryls after a meal (for the all food allergy) daily for about 6 or 7 years. I still take both but try to skip as many days as possible since the shots have helped so much.
Right now the topical creams I'm using are Fluocinonide on my body and Hydrocortisone Valerate for my face. In the past I've tried protopic, elidel, mometasone, clobetasol, triamcinalone acetonoid and more whose names I forget. Elidel made me extremely sensitive to heat, not a complaint but odd. New ointments always work for a couple of weeks and then they stop working. My favorite non-steroidal moisturizers are Aquaphor by Eucerin and Aurstat Hydrogel because they don't sting when I apply them. My dermatologist loves Cerave which I can use sometimes but if my skin is raw it hurts to apply so I always have Aquaphor around. Most other oils, creams and lotions will either hurt to apply or start itching within minutes. Even plain mineral oil becomes itchy.
One of the most helpful recommendations my dermatologist has ever made is the use of wet pajamas. I can't believe it was only until this year that I've discovered this technique. The first night is a pain but the results were worth it. For a week soak a plain basic cotton pair of pajamas (long sleeved crew neck and long pants) in water and wring them out to so they aren't dripping. Put on the wet pj's and then put on a looser pair of dry pj's over the wet ones. Go to sleep and wake up with softer skin!
I rarely get asthma this year. It was mostly a problem before the allergy shots kicked in but it can come back. In April I stayed at a new house for a weekend and the oil based paint fumes from the baseboards and closet shelves were still in the air. I sounded like an accordion trying to breath and felt so desperate for air. After a few days back in my own home and many puffs of the Ventolin inhaler I was back to normal. I personally use VOC free (not low-VOC which is still way too high for me, low VOC, what a joke) since years ago I ended up in an ER needing immediate treatment to breath after painting with...low VOC. So my beautifully painted rooms are done with Freshaire from the Home Despot.
Right now the topical creams I'm using are Fluocinonide on my body and Hydrocortisone Valerate for my face. In the past I've tried protopic, elidel, mometasone, clobetasol, triamcinalone acetonoid and more whose names I forget. Elidel made me extremely sensitive to heat, not a complaint but odd. New ointments always work for a couple of weeks and then they stop working. My favorite non-steroidal moisturizers are Aquaphor by Eucerin and Aurstat Hydrogel because they don't sting when I apply them. My dermatologist loves Cerave which I can use sometimes but if my skin is raw it hurts to apply so I always have Aquaphor around. Most other oils, creams and lotions will either hurt to apply or start itching within minutes. Even plain mineral oil becomes itchy.
One of the most helpful recommendations my dermatologist has ever made is the use of wet pajamas. I can't believe it was only until this year that I've discovered this technique. The first night is a pain but the results were worth it. For a week soak a plain basic cotton pair of pajamas (long sleeved crew neck and long pants) in water and wring them out to so they aren't dripping. Put on the wet pj's and then put on a looser pair of dry pj's over the wet ones. Go to sleep and wake up with softer skin!
I rarely get asthma this year. It was mostly a problem before the allergy shots kicked in but it can come back. In April I stayed at a new house for a weekend and the oil based paint fumes from the baseboards and closet shelves were still in the air. I sounded like an accordion trying to breath and felt so desperate for air. After a few days back in my own home and many puffs of the Ventolin inhaler I was back to normal. I personally use VOC free (not low-VOC which is still way too high for me, low VOC, what a joke) since years ago I ended up in an ER needing immediate treatment to breath after painting with...low VOC. So my beautifully painted rooms are done with Freshaire from the Home Despot.
Sunday, June 12, 2011
uninvited guest
I've had bad eczema problems since I was 23 and a bug bite became infected. I did go to the doctor and was prescribed doxycycline. I assume the infection triggered a switch in my system that has made me so sensitive to most foods and the environment ever since. It took me a couple of years of confusion and many doctor's visits to figure out this was here to stay and take over my life. It seems so arbitrary that an infection can cause this. Ashleigh Morris, a teenager became allergic to water after getting tonsillitis. Her picture of the rashy skin patches don't look bad but I can tell you it hurts like hades to have even the softest clothing brush up against such rashes.
I did have random very small patches of eczema as a kid (behind the knees type of thing) but it had not been a problem for nearly twenty years. Doctors say it's hereditary and ask if my parents had bad allergies and I say no. I tell my parents and they say "Oh, yes we do have allergies, I sneeze whenever I mow the lawn!" or in the midst of raining cedar pollen, "Yes, I get so congested." Ugh, that is NOTHING compared to feeling like someone took a cheese grater to your entire body while stuffing your nasal cavities with cement 300 days a year for almost a decade. I'm giving 65 days to the random and FLEETING recoveries I relish once in while. I do admit that I have been able to operate outside the hijacking fog of congestion lately (past few months) thanks to allergy shots but the skin allergies/eczema/dermatitis persist and of course the congestion comes and goes. It's just not a fixture anymore. My upper lip is weeping right now. :( That last sentence would make no sense to a normal person.
I did have random very small patches of eczema as a kid (behind the knees type of thing) but it had not been a problem for nearly twenty years. Doctors say it's hereditary and ask if my parents had bad allergies and I say no. I tell my parents and they say "Oh, yes we do have allergies, I sneeze whenever I mow the lawn!" or in the midst of raining cedar pollen, "Yes, I get so congested." Ugh, that is NOTHING compared to feeling like someone took a cheese grater to your entire body while stuffing your nasal cavities with cement 300 days a year for almost a decade. I'm giving 65 days to the random and FLEETING recoveries I relish once in while. I do admit that I have been able to operate outside the hijacking fog of congestion lately (past few months) thanks to allergy shots but the skin allergies/eczema/dermatitis persist and of course the congestion comes and goes. It's just not a fixture anymore. My upper lip is weeping right now. :( That last sentence would make no sense to a normal person.
itch scratch
How many times have I just thrown my hands up (or clutched them together) and told myself that the best way to solve the problem of my eczema is to simply NOT SCRATCH? It feels like the number should be equivalent to the grains of sand in the earth's oceans. I mentally dig in my heels with great resolve to simply beat the urge to scratch with sheer willpower. After all, a rash only gets worse with scratching which can lead to infection, so... don't scratch. Well sometimes not even a minute passes and my mind is thinking of something else while I dig my nails into the itch with no clue of my physical actions until I feel the blood on my leg. It's disgusting and I would be grossed out to see someone else doing this and yet I've done this in front of others and quickly recoiled in mortification. They saw, I know they saw but we'll just pretend because I'm the girl with rashes all over her body, so sad. Nothing hammers in that depression like friends and strangers looking back at you with confused pity.
As much as I itch, if I were to have a strait jacket on, my skin is at a point were scratching is superfluous. Several parts of my body would still become inflamed, red, raw and sore with no help from scratching. In fact if I tried to so much as pat my face right now it would feel like a sting scratch. My legs do itch but really, the areas of my body that hurt the most, I rarely scratch (face and chest). Still, scratching at your legs makes people ask about mosquitoes, poison ivy, something anomalous to your daily life?? No, this is just me, grossing everyone out, including myself.
As much as I itch, if I were to have a strait jacket on, my skin is at a point were scratching is superfluous. Several parts of my body would still become inflamed, red, raw and sore with no help from scratching. In fact if I tried to so much as pat my face right now it would feel like a sting scratch. My legs do itch but really, the areas of my body that hurt the most, I rarely scratch (face and chest). Still, scratching at your legs makes people ask about mosquitoes, poison ivy, something anomalous to your daily life?? No, this is just me, grossing everyone out, including myself.
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