Sunday, March 2, 2014

Two Months In

Well, here I am!  I'm at a benchmark place and feel it is high time I catch you up and share an allergy/health update.  For anyone who might need the back story or want a refresher, you can see my full set of allergy posts here

To recap, here a quick summary and timeline of what happened:
mid-June - get really sick with rashes, swelling, itching, exhaustion, pain, swollen lymph nodes and seem to lose the ability to regulate my body temperature
June and July -  try to figure out what is wrong, go to my acupuncturist, my primary care doctor, an allergist, 2 dermatologists, do lots of research on my symptoms, am subjected to lots of testing and appointments and presciption medications that do not help or provide any answers.  have short bouts of seeming to get better only to get much worse again.
August - hit my wall and accept a prescription for oral prednisone.  it provides much relief but no answers.  get on waiting list for an appointment with a contact dermatitis specialty clinic for testing
September to mid-October - taper off of prednisone in preparation for contact allergy testing, symptoms return
mid-October - contact allergy testing
late- October - get results from testing but healing does not begin due to negligence from the doctor

Ok, so I guess that wasn't a "quick" recap!

After getting my test results and subsequently being mislead by my doctor, I decided to do everything in my power to get better and to depend on myself to get there.  I realized that giving myself the best chance at the quickest recovery possible was going to mean that I needed to become an expert STAT!  I needed to understand (and limit/control, when possible) everything I came into contact with because any exposure to an allergen jeopardizes my recovery.  Since I had been continually exposed to my allergens, I was told to expect multiple months of recovery time before my body finds a stable place.

Armed with my list of allergens, I hit the internet.  Google, google, google away!  I learned so much in such a short time!  My biggest challenges included a list of allergens that are seemingly omnipotent and a lack of understandable/accessible information about products. I did a lot of trial and error with products at first.  My allergens are found in nearly every personal hygiene product, laundry, cleaning products and medicines, so I tried a lot of DIY options.  And, as I found out through trial and error, sometimes I react to products that don't contain my allergens.  I think my body has become so sensitized through the months of exposure to allergens that it just can't handle much of anything right now.  By January 2nd, I was done with the trial and error and had developed a set of extremely pared down products that addressed my (extremely!) basic needs.

For the last 2 months, I have exclusively used the following products:

Showering is where I was regularly dosing myself with allergens and thus has undergone the biggest transformation.  My shower stall is bare!  After trying a ton of shampoo/conditioner options including a ton of natural versions, I needed to cut it all out.  I use water.  That's it!  I also installed a shower filter but I am not sure if it is making a difference.  The only products in my shower are Dr. Bronner's Unscented Shaving Gel and a razor that I had to really work to find.  I was not able to find ingredients for the moisturizing strip on my razor blades nor could I find that information out for any of the razor blades on the market.  So, I searched long and hard for a razor and razor cartridge situation that did not involve any strips or soaps or fanciness. I'll be honest, it is not an ideal shaving situation, but it is getting me by.

Ok, so let me go back to my proclamation about my water-only showering strategy.  Crazy, right?  It turns out I am not the only one on this radical boat.  A lot of people are turning to that option for the same reasons I am: medical ones.  But, there are also a lot of people who are switching in order to avoid all of the chemicals and unknowns in the plethora of personal hygiene products on the market.  It isn't easy, though.  It takes a bit of an adjustment before your hair realizes it can chill out on the oil production, but it has been fine after I got past that stage.  There is a ton of info on the internet about water-only washing for hair so I will not spend a lot of time on it here.  Feel free to let me know if you have questions.

Also, I should mention that I have a bar of soap in the shower, but I found it isn't really necessary.  Just scrubbing my body with water seems to have the same result, so I eliminated that from my routine for now, too.

As long as we are on the subject of my "just use water" campaign, I ended up going that route for laundry, too.  I researched the best laundry detergents for people and for the environment and settled on one to switch to.  I tried it out and my body hated it.  Then I switched to baking soda only.  That was worse!  I tried to go back to my original laundry detergent I've used all along, but my skin was still dry and angry.  So, in the spirit of eliminating as many variables as possible, I just use water in the washing machine and these wool balls in the dryer.  We have some laundry detergent around in case there is a really grubby load of (usually dog-related) laundry, but have only had to use a few times and never on my clothes.  

Interesting aside: I have noticed that since I have been almost exclusively wearing plant fibers that static cling hasn't been an issue.  Paul has clothes made of synthetic fabrics and I've noticed his clothes come out of the dryer with static. 

Allright!  Here is the biggie.  This is the set of products that I use to meet my daily needs.  Before all of this allergy stuff, I was an eczema sufferer and I still am, so moisturizing my skin safely is of a top priority.  I was able to keep using my tried and true Aveeno Daily Moisturizing Lotion and have added coconut oil to my routine.

I have stopped using all lip balms and just use Vaseline right now.

As of the end of December, I was able to switch from prescription topical steroids to an over the counter one: Cortizone-10 (the one with no other ingredients except the steroid and petroleum jelly).  Hooray for that!

For hand washing, I have a bar of Dr. Bronner's unscented soap.

I wear contacts and have decided to stick with Opti-Free Pure Moist multi-purpose solution even though it has some proprietary ingredients that I do not fully understand.  I tried alternatives but they made my eyes burn and also had unknowable ingredients.

After many failed homemade versions and some unsatisfying special order toothpastes, I decided on Weleda Salt Toothpaste.  I also have a salt crystal deodorant that I use sporadically.  Apparently, I like salt in all its forms.

Although it is not a product, I included my fine tooth comb in the picture because it has become an essential for me with my water-only shampoo strategy.  It helps to even out the sebum/wax throughout my hair.

You might notice there are a lot of things missing when you compare this to the average American woman's set of toiletries.  No perfume (that wasn't hard for me), no makeup (I miss mascara!), no nail polish (I am allergic to many polishes and to polish remover) and no toner/facewash/scrubs (water only for this, too!).  I wasn't much of a girly girl before this, but I do miss some of the frivolous products.  I tried natural mascara and it was totally crap.  Maybe someday I will reintroduce some of this stuff.  For now, I am just grateful to be comfortable in my own skin.  Literally.  My skin was so uncomfortable that I was totally OK with giving up all of this stuff for the potential of finding comfort in my body again.

Another area that I had to consider was cleaning products for the home and kitchen.  Once again, mostly water being used in this category, too!  We have been making our own vinegar water (sometimes we add essential oil) for cleaning for a long time, so that didn't need to be adjusted.  I changed our dishwasher detergent to Earth Friendly Products Wave soap after doing research on the ingredients and safety of these types of products.  Scary stuff!  We kept the same dish soap we had already been using for handwashing dishes: Seventh Generation Free and Clear.  We also have baking soda for scrubbing and a container of liquid Unscented Dr. Bronner's Soap for tougher cleaning jobs but haven't had to use them so I left them out of the picture.  Its amazing to see how truly little we need to keep around the house when it comes to products!

Ok, here I go...out farther on this limb than I ever thought I would.  I am going to clue you into how these allergies have impacted my sex life.  I wasn't super keen on sharing this part, but I also didn't want to omit this information in case someone else is struggling through the research, finds my blog and this information helps them along.  If you want to skip past this part, go ahead and skim down to the part where I show naked pictures of myself.  Wait!  What has happened to my knitting blog?!

As I was doing my research on each and every thing that comes into contact with my skin, I started to research condoms.  In the process, I talked with the lovely staff at Smitten Kitten and learned that the sex industry has very little to follow in the way of regulations.  This has lead to a real lack of information for consumers.  For instance, all of the condoms at our local Target store are lubricated and not a single one of them tells you what the lubrication is made out of.

We needed to find out what the product we use contains, so we figured we would just email them and ask.  Nope, no email address to be found on the packaging or the website.  How about calling them?  Nope, no contact info listed for that either.  We ended up finding a phone number for the company that owns Trojan, but the number was old and nobody answered it.  The one and only way to make any inquiry was by mailing a letter to the company that owns the company that makes the condoms we used to use.  I didn't even want to go that route since I had a strong suspicion it would be unfruitful.

So, we thought we would work around the problem by getting unlubricated condoms and buying a lubricant for them.  First of all, getting unlubricated condoms takes extra effort and, according to what we found, most brands make these condoms out of a really thick latex.  We eventually found a good solution that we ordered online: Life Styles Ultra-sensitive Non-lubricated.  Second of all, buying a lubricant whose ingredients are listed, whose list you can trust and whose ingredients do not include my allergens was a challenge.  Again, major thanks to Smitten Kitten.  They helped us look through their many products to find options without propylene glycol.  The winner: Ride - Dude Lube - Water-Based!  It had the least ingredients and none of my allergens  It is obviously not marketed to us what with the dude focus, but to that we say, "Yeehaw!"

I hope this marks the end of sex related content on my blog. I like to keep is family friendly around here, except for the occasional cuss words that make it through  :)
So here is where the news gets happy! Guess what?!  All of my research and strictness is working!  Here are some before pictures that I took in the summer and some pictures from today.  I am not totally better, but I am so much more comfortable now.


I have more to share about the other things I am doing to cope (food, furniture, the outside world!) and the other adjustments (how to get a haircut!) I have made to create safe spaces for myself, but I will save that for another day.  I want to close this enormous post by saying that after having been through all of these ups and downs and having to let go of so much, I truly appreciate and cherish each day that I wake up and have a little bit more of my health back.  I am about to go and do some really average Sunday afternoon activities like cooking, laundry and cleaning and I am so grateful that I have found a way to do it without questioning my every move and potentially making myself sick. Having your health is such a valuable thing!


  1. Thanks for the update, Trinity. Glad things are up the upswing for you and I hope they only continue to get better!

    1. Thanks! I am feeling hopeful that the trend will continue!

  2. ha ha ha.... i feel your pain (literally- doing an elimination diet to see why my eczema flare is so bad this past year)... and regarding the sex stuff: when i found out that i was allergic to kiwi, they mentioned a sensitivity to latex. Well, 1 ER visit in the middle of the night later... it's not a sensitivity- it's an allergy. A very embarrassing allergy. :(

    1. Oh, my! Thankfully that is not a trip I have had to make. Allergies do provide a lot of learning opportunities, that is for sure. I hope your elimination diet is fruitful (punny!).

  3. Oh your skin looked so angry! So glad things are getting better. Since you first posted about all the chemicals,I've really started paying attention to labels. So sorry that you have had to go through this. Love ya, Casey

    1. Thanks, Casey! It really was so very angry. I feel proud to have found my way to the other side of that time (hopefully!). I am glad this information is relevant to you, too. It is really fascinating to research how things are made and to think critically about what we are choosing to use and consume.

  4. Thanks for sharing! I'm sure this will help other people out who are going/will go through what you have. I'm so glad that what your doing is working!!!

    1. You said it, Sarah! I have learned from other people's experiences and wanted to put mine out there in case it helps someone else.

  5. Oh, Trinity! Your poor skin! :( :( :( It sucks that you have to work so hard to get back to normal, but I'm glad your hard work is paying off.

    Also, given where I work, it's probably not surprising that I try to normalize sex-life conversations in daily life, but I know it can be difficult! I'm going to bookmark this post for the next patient I see that has allergy problems; you never know who it might help.

  6. Congratulations on the improved comfort!

  7. I am applauding your success, tenacity, and self reliance. I am also exhausted for you, holy man, as if you did not have enough great fun hobbies now you basically have a health hobby. From one health hobbyist to another , I salute you. I am forever grateful that my health hobbies are for fairly common ailments, like Joann Fabrics level health hobbies. Having your health is valuable and knowing how to manage your health is a whole other battle.

    1. Ha! Joann Fabrics level! Very funny way to put it. Even though there are plenty of mysteries involved in my health stuff, I am grateful for the progress that has happened over the past few decades. Having patch test results helped fill in some of the largest pieces in my puzzle! Here's to improved health for both of us!


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