Posts filed under Share Your Story

Hidden Nickel

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I had patch testing done years ago and was able to have relatively itch free years. Knowing the chemicals and metals that affect me and being free of them makes it so much easier to figure out when something new sneaks in. Sometimes it takes awhile but the most usual suspect is nickel.

Two surprising sources of nickel are acupuncture needles and supplements/pills. I thought the needles were supposed to be 100% stainless steel but I was having a reaction and my practicioner contacted the manufacturer and there is a slight amount of nickel in them. So slight that they are not obliged to list it!

I have also realised after many months of dealing with hands that were erupting,peeling and repeat for months that the supplements I was taking were causing the outbreaks. They and many pills, toothpastes and other products have titanium dioxide added for whitening. This titanium dioxide also has some nickel added during production which is not listed on any packaging. I have now stopped taking the supplements and are researching others that are not coated.

Hope this info helps others who are suffering and looking for hidden triggers!
— Anonymous

I’ve always wondered about acupuncture needles! The practice of acupuncture has interested me for quite some time and I almost booked an appointment. I ended up being swayed in another direction (you can read about there here), but after reading your story I’m glad I didn’t try the needles! I think it’s terrible that they aren’t at least required to list a trace amount of nickel. Some of us are crazy sensitive!

I gave a big frowny face when I read about the supplements… nickel seems to be hidden in SO many things. It’s overwhelming! I’m glad you were smart enough to figure out that tid bit about titanium dioxide, though. Good job! Now I’m gonna check my vitamins. Thank you for sharing this info with us :-)

XOXO, Jennifer

Difficulty Of Being Allergic to PG

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About four years ago, when I was in seventh grade, I had dry skin on my face that my dad gave me some Eucerin lotion for. The next day I woke up with my face so swollen and irritated that I couldn’t open my eyes fully. I looked like a tomato with teeny slits for eyes. For about a week my face stayed like this, rashy, irritated, puffy and peeling (it’s gross). I finally got diagnosed by a dermatologist as being allergic to PG and Propylene Oxide after missing almost a week and a half of school. I got some desonide cream from the local Walgreens pharmacy and life was good. Until my most recent reaction. My family went to a concert for my moms birthday, and the band’s techs were running an absurd amount of fog from the machines, and it only took about 10 minutes for my skin to start itching and burning. We left after being there for 30 minutes total (the band feels really bad, my dad is friends with their light tech) and then had an awful 2 1/2 hour car ride home. I went to our new doctor for a prescription (my old tube of desonide cream was empty) and I went on my merry(ish) way to get the prescription from the pharmacy. I put some of the cream on the second we were out of the store, because at this point I had been in pain for 3 days straight. The cream tingled, which I thought was normal, and the swelling went down. I woke up this morning with my eyes puffed up again, so I put my cream on, and hoped for the best so I could make it to work. Within minutes of putting on the cream, my entire face started burning, itching and swelling. We checked the ingredients of my prescription (which was a topical corticosteroid I had used for 4 years but a different brand) and it had PG. I did research to find out more about my allergy (this blog has helped me so much, by the way, thanks) and found that the best place to find the kind of corticosteroids that I need is Canada. I live in the middle of the US. Im fine with reading labels, im used to it. What I’m not used to is my face feeling like it’s going to implode. If you have any tips, tricks, etc. it would be greatly appreciated. Thanks again for your help :)
— Anonymous

Hello, fellow PG allergy warrior!

I am SO GLAD you brought up the theater smoke thing because I recently ended up bowing out of a family outing because I was told theater fog would be present. I won't get into the details because this is about YOU, but the whole situation was really aggravating on SO MANY LEVELS. It's amazing how many different types of things contain propylene glycol... from food to body products to medication and theater smoke... it's hard to avoid! People joke sometimes and say things like, "Man, I bet you're even allergic to soap!".... thinking they're being funny and extreme, but their face always drops when I tell them they're accurate. I'm very grateful for this online community because most people just do not get it. How could they?

For steroid ointments, I had success with Desoximetasone. I haven't used it in over a year because I hate paying for expensive medications and people's skin can become dependent on topical steroids and thin the skin... not good. But if it must be used, what else can you do? I've tried oral steroids (Prednisone and between how bloated it made me and the side effects I read about, like, psychotic breakdowns... I was like, no thank you).

As far as tips go, it sounds like you're on the right track. Reading ingredient labels is huge as is doing your research. The most aggravating thing about propylene glycol is that is goes by many names! Here's a list of alternate names. Definitely stay away from modified food starch... read more about that here. Many people with PG allergy will tell you to avoid propanediol, so I looked into it. I also got some doctors involved and you can read about that here. This is also a little list of other items to watch out for.

I hope this helps! Best of luck on your journey!

XOXO, Jennifer

Bubble Girl

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Dang!!! It’s all I can say before I start a Loooong story how I found out about my eczema and allergies.

I can’t express enough the frustration I feel and the empathy for everyone that has to deal with it.

I knew I was allergic to nickel when I was 16 and got my ears pierced. It never healed properly and it blistered like a mofo. I didn’t think much of it except wear better jewelry. I didn’t realize (like many of us) how many things contain nickel. 😳

My allergies: Nickel, palladium chloride, shellfish, bees and last but not least, sulfa medications (this one is a doozy) I ended up with Steven Johnson Syndrome with this fella. 🙄

I was told by my allergist NOT to eat veggies out of a can (yep, true story) be careful with foods that contain nickel. YES! You heard it correctly FOOD! He also warned me about belt buckles, jeans snaps, keys, bucles on shoes. Good God, will I ever leave my house again? On the bright side I could just wear yoga pants and flip flops without a bra for the rest of my life 🤔

I’m a lady barber, I come in contact with A LOT of metal... 💩

I’m trying to figure out how to go about that. Lol it isn’t easy, that’s for sure.

Up until I read the thread, I didn’t realize about makeup. That’s insane!

I can tell you about tattoos though. I had a horrific reaction to my tattoos, yes, multiples. Be super careful and tell your artist about your nickel allergy. If he/she is a responsible artist, he/she will do a patch test on your skin with the colors you want to use.

thanks for the info everyone!
— Mia Hall

Hi, Mia!

Wow, being a hair dresser with nickel allergy can't be easy! Scissors, hair pins, combs/brushes... and probably other things I can't even think of... I definitely recommend a nickel testing kit (my fav is in my product guide) and purchasing from a hair accesory place with a good return policy. 

Isn't it crazy how much nickel creeps into food? People with nickel allergy should absolutely do their fair share of research on nickel in food.

You know, I feel like yoga pants, flip flops and no bra sounds like a good idea lol! Thank you sharing the nickel allergy / tattoo information. Finding a responsible artist you trust is definitely key.

Good luck in your journey, Mia!

XOXO,

Jennifer

Essure Issues

At the age of 31(2010) I visited my ob/gyn to to get my paraguard IUD removed, (10 year birth control). I was happy with the IUD and actually went in order to have a new one placed. That’s when my doctor started talking about how wonderful Essure was and how it’s a fairly new form of birth control that is permanent, and a great alternative to having a tubal. I was told it’s done in the office, takes about 15 minutes and is very safe and just as effective as other forms of birth control.

The only other information I was given was that after 3 months I would have to visit the local hospital to have a dye xray to ensure nothing was getting through my tubes, and after that, no worries. In hindsight I did have a nagging feeling that something was off, but like so any others, I trusted my doctor to know best. I booked the procedure and showed up at his office that morning, I was taken back to undress, and given a mild sedative pill to help me relax, after about 30 minutes, I was taken to another room and laid on the table, my doctor came in and set up, by then I was groggy and uncaring, that’s when he had several (4 I think) colleagues come in that were going to stand in on the procedure. Again, it didn’t bother me at the time, but later it didn’t sit well with me that I wasn’t asked while I was lucid.

The procedure was very uncomfortable and the pressure was intense. I left the office in a stupor, and had light spotting and bleeding for 3 days afterwards. Fast forward 3 months I go to have the dye xray, and this was worse than the initial procedure for me, the” balloon “the girl used apparently was defective, the pain and pressure had me lift off the table and whimper in pain ( and I have had a lot of physical pain in my life). She apologized and tried again, this time it was unpleasant, but not unbearable like before. I was told the procedure worked and I was good to go. It took 2 years for me to start noticing strange side effects (2012). And at first they were brushed off and I dealt with it the best I could, with ibuprofen.

About 2 years ago from today (2015) I saw what I had hoped wouldn’t happen on t.v. Lawyers firms saying women were having to file suits because of Essure birth control implants. I started researching stories and after several surreal hours, I just broke down and cried. These other women were having the same issues I had been chalking up to age and hormones. EVERY LAST SIDE EFFECT!

I have had terrible stomach bloating, hair loss, extremely painful periods, digestive issues, mystery rashes, weight gain, terrible headaches almost daily, migraines on a monthly or bi monthly basis. Had a tooth fracture, extreme fatigue, and depression. I was online reading other women’s stories and I just got so angry . I learned we couldn’t even sue Bayer because the FDA has backed them against lawsuits, and that Doctors were receiving sizable kick backs to push this device on their patients. I felt sick to my stomach that this injustice is happening in the United States.

After years, the only developments have been a black box warning on the box, which doctors don’t even have to mention if they’re not inclined, and other countries banning the device. But no ban here in the states. After 2 +years us ladies are still fighting. A lot of them worse than my story, some have had miscarriages, perforation of the device, and even carried babies to term and delivered. At very high personal risk. It’s heart wrenching that money is taking top priority over our health and well being. No long terms studies were done before essure hit the public market. And they’ve made us all feel as if we’re crazy and putting blame on them unfairly.

On that note, my implanting doctor’s office, acted as if they were dealing with scum when I requested my medical records. We will all continue to fight until this awful device is no longer available anywhere. It’s a sad day when women rejoice getting a hysterectomy, but it’s the sad reality that it happens every day. I myself do not have insurance at the moment, but am taking steps to save up to have my day that this problem causing device is taken out. Thanks for letting me share story.
— Sincerely, Hendi Ausburn

First of all, Hendi, I wish I could wrap my arms around you and give you a big hug. What you've been subjected to is beyond inexcusable and I am so sorry that you have had to deal with this extreme amount of emotional and physical pain. Essure is becoming a real problem (to put it mildly) and the stories I've read have been horrific. 

Thank you for the tidbit about doctors not having to warn people about black box labels... I mean, pardon my french, but WTF? How is that helping us? These doctors are supposedly working in our best interests? Please. I agree that it's beyond messed up how money has become the priority. Doctors take a Hippocratic oath vowing to conduct themselves properly. 

The way Essure is being handled is disgraceful.

Also, the fact that you have to save up money to fix other people's mistakes is just not right. It isn't. This healthcare system needs to do more for us. Please consider starting a GoFundMe account to help you save up. I'd be happy to share the link! Nobody should have to wait in the state you're in to get help.

Thank you so much for sharing your story, Hendi, and please share your experience with us after getting Essure removed! 

XOXO,

Jennifer