Bad Doctor

So, to pick up the allergy saga where I left off last week:

The super frustrating part about this experience was how the doctors I saw made my problem worse.  When I first met with a dermatologist in late July, she was really concerned about my natural soap and advised that I switch to this line of "allergen-free" products.  She set me up with samples and encouraged me to make the switch. She also wrote me a prescription for a special shampoo because she thought it might be helpful for me.  I switched to the soap and shampoo she gave me and tested out some of the other stuff.  The other stuff was irritating to me, so I didn't use it for long.  I stuck with the soap and shampoo, though.  Then, I kept getting worse and worse or I would show some improvements for a day or two and then get way worse.

Since things were getting rapidly worse, I went in to see another dermatologist at the beginning of August.  He referred me to the patch clinic, set me up with topical medicine, prescribed a long, tapered course of prednisone and affirmed the other dermatologist's recommendation for the Vanicream products and prescription shampoo.  Right before my patch testing, I became suspicious of the prescription shampoo so I switched to the suggested shampoo and conditioner from the Vanicream line.

It took over 2 months to get into the patch clinic.  I then went through the intensive testing, bringing in my suitcase of products for each of the 3 appointments.  The whole point of the testing process was to determine what products are safe for me to use.  So, on the day where I got my results, the doctor looked through my products and picked out which ones were safe for me to use.  The game plan I was given was to exclusively use those products for 2 months and then have a check-in with my dermatologist.

For the first week, I did just as she said.  Using only the handful of products she had approved.  I got worse and worse and worse.  By the end of the week, I was physically and mentally a mess.  It had been such a long road to get to the patch testing and by all accounts, that was the last stop on my road of options.  If those test results didn't solve my problem, the doctor told me that was all she could do for me.  I was feeling pretty beaten down by the whole ordeal.

After a bit of a breakdown on a dog walk and some kind and supportive words from Paul, I decided to start from scratch (ha! not punny!) and be my own doctor.  I took my test results and all of the products I had been using and scrutinized everything.  What did I find?  What was right there on the label not even hiding under an alias?  PROPYLENE FUCKING GLYCOL!  Right there on the label of the products I was told to use.  Thanks to the instructions from a patch clinic doctor, a supposed contact allergy specialist, I was dousing myself with an allergen every time I washed my hands, took a shower or walked around with my hair on my head...which, as you might guess, was ALL OF THE TIME!

I was so angry and so amazed that the doctor could be so neglectful.  This is her specialty!  I haven't told the patch clinic what happened yet, but I plan to.  I can't let that go.  She needs to do her job.  I thought about saying she needs to do her job "better", but that isn't right since she didn't do her job at all.

I am not as upset with the first two dermatologists I saw as they didn't have the test results to work from.  But, still!  I would have better off if I had kept using my own products.  I was right to have suspected the prescription shampoo as it ended up containing multiple allergens.  No wonder my skin was so angry!

And, from there, I began my own quest to eliminate as many allergens as I can from my products, from my house and from my diet.  It is not proving to be easy.  I feel the need to say here, that I know many people have allergies, some of which are farther reaching and much harder to cope with than mine are.  That said, this still really sucks.  I am at my 2 month mark since my testing and I have yet to find products that don't make me sick.  I am less sick, but I am still irritated and limited by my health.  

Here is the silver lining: 

At least it only took me a week to realize that the doctor steered me wrong.  

I have some concrete test results to drive my changes.

Most of the things I need to remove from my life are bad for people, so everyone in my house will be better off in the end.

I am capable of doing the work it will take to sort through this.

I have access to alternative products.

I have resources to support my needs (at least most of them).

I am a DIYer, so I am not afraid to make my own alternative products.

And, most of all, at least I am not as miserable as I was last summer!

Patch Testing: The Results

I know I am long overdue in posting an update about my health issues.  I keep hoping to find resolution and be able to post a nice, happy post with a little bow on it.  However, it is becoming apparent that there will be no tidy wrap-up anytime soon.  So, I will just let you know where I am with it at the moment.  For those who find reading about the health issues of others a bore, feel free to skip this post!

The upside is that the patch testing gave me some answers!  I am doing far better than I was doing in June through October.  The downside is that my patch test results are hard to implement.  Additionally, I seem to have become highly sensitized to things beyond those on my allergen list.  I am still struggling to find products I can use and ways to navigate the world without getting sick.  But, first thing first!  Let's move on to the results...

For those just tuning in, here are some posts to give you some background:
The onset
The testing

After my week of patch testing, I was given my results in the form of a list and a little blurb about each item.  My results indicated allergic reactions to 10 of the substances in the panels.  Here is a quick and dirty rundown of the culprits:

My reaction to Balsam of Peru confirmed what I had already known: I react to fragrances/perfumes and many cosmetics.  I need to explore more about how this impacts food and drink choices, but for the time being, I am avoiding things that say "natural flavors" in the ingredient list and am careful with the tea I drink. Citrus has always been hard on me, which makes sense in the context of this result, too.

I also found out that I avoid those hand sanitizer liquids and wipes for a good reason: they contain benzalkonium chloride, which I am allergic to! 

Impacting my knitting...I had a mild reaction to 2 of the 4 red dyes (disperse red #17 and disperse red #11) that were tested.  I went over the results with the doctor while I was wearing a red shirt and had been knitting a red sweater all throughout the testing experience, so obviously some things in my wardrobe and yarn stash are going to have to be put aside.  I am hoping this one is temporary as there were 2 red dyes I did not react to.  This might also impact food, but I am not sure of that.

Shellac made an appearance on my list, which is in way more things than I would have ever known.  In addition to its use on wood, it is also called confectioner's glaze for use on candy, pharmaceutical glaze for coating pills and E904 when it waxes fruit. 

I also reacted to Carmine, which is considered a natural way to color cosmetics like blush, mascara and lipstick.  It is also used as a natural color in medicine, food and beverages.  I am currently really thankful for companies that label their ingredients thoroughly instead of using vague ingredients.

I will not be using my standard antibiotic ointment anymore as Bacitracin is also on my list.  Maybe it isn't supposed to itch so much when small cuts and scratches are healing?!  Huh.

These ones are a mouthful: oleamidopropyl dimethylamine and cocamidopropyl betaine.  I list these together because they are cross-reacting, which means if you test as allergic to one, you are supposed to avoid both of them.  These are both used in cosmetics (lotions, shampoos, etc) as emulsifiers. and has, in combination with my other allergens, made finding shampoo and conditioner a nearly impossible task.

These are useful things to know and I likely came into contact with small amounts of these things regularly, but the real lightbulb result was an allergy to propylene glycol.  I had never heard of propylene glycol until I got my results.  I was tested for 2 different concentrations of it and reacted significantly both times.

When I was first given my results I was a bit disappointed because I didn't feel like any of the items on my list could have explained the explosion of health issues I experienced in June.  Well, now that I have done hours and hours of research and reflected on what I have been exposed to this summer, I am pretty sure propylene glycol is the main culprit for the sudden onset of contact allergies and the intensity with which it took over my body.  This chemical is everywhere!

Through my research, I learned that propylene glycol is used in ecigarettes, which I was exposed to a lot this summer.  It is also used to make polyester, polyurethane (foam and waterproofing), various wood sealants, it's in cosmetics (soaps, shampoos, lotions, deodorant, nail polish remover etc), medicine, foods, beverages and many, many more things.  For some of these things it is used in the manufacturing process (like polyester and possibly other synthetic fibers, leather) and would not be evident (or listed) in the final product so I am finding it really hard to get concrete information about what is safe.  I know for sure polyester is an allergy trigger for me.

In the middle of June, we had gone camping with new gear (polyurethane coating on new tent, rain gear and dry bags that held our food and spare clothes, polyester sleeping bags and sleeping pad and potential propylene glycol exposure with the cooking stove fuel) right after visiting my dad (ecig exposure).  The campsite was rustic and didn't have running water so I didn't shower.  I think it was this prolonged, mega exposure from a number of sources that triggered the huge flare up.  Then, I kept getting re-exposed throughout the summer.  If I think back to my roller coaster of near-recovery and then re-flares over the summer, I can match them to propylene glycol exposure.  Finally!  Some answers!

I think I will leave it there for now. I have a lot more to say about propylene glycol, including another (!) enraging story about my medical experience, but I will save that for another day.  Thanks for reading this long post.  You are a trooper!

May Gardening - Back Yard

Thanks to a rainy day, I am taking the time to write about my garden instead of being out in it!  May was a fabulous month for gardening.  I took a smattering of vacation days many of which were host to very summery weather, so I had more time than usual to plant.  Paul and I started the month off with a visit to the Friend's School Plant Sale, where we got a lot of the starter plants we wanted for this year's garden.

Combine that with the plants I grew from seeds indoors, the seeds we planned to start directly in the ground and a few extras from Mother Earth Gardens and we were all set to get things in the ground.

Except for some time spent weeding, there are a few parts of the yard that take care of themselves.  Like our shaded rock garden.  The vinca I planted last year is thriving.

A few plants the previous owner planted are maturing and blending nicely.

Most of the transplants I have acquired from the yards of friends and family have taken to their new locations nicely, like these coral bells.

And these peonies!  I finally have peonies!  I have two bushes from my grandma's yard via my Aunt Audrey that were transplanted last fall.  They weren't sure what colors they dug for me, so I am really excited for them to bloom this year.  It'll be my version of the red carpet at an awards show.  "Oh!  What is she wearing?  That color is beautiful!  Just look at those petals!"

I am not sure if I mentioned it here yet, but we had the huge silver maple tree in our yard taken down over the winter.  It was damaged during the storm last summer and had become too much of a liability.  We had thought we would be able to use the base of the tree for the coop, but zoning wouldn't allow it.  So, now we have this oozing maple stump that the bugs love.  We are going to have to do something about it, but we aren't sure what we'll do yet.

The raspberry patch will likely be even happier now that the tree is no longer throwing shade over part of the patch.  I've finally gotten my pruning strategy worked out for the patch and I put a dose of turkey manure fertilizer on it, so I am expecting a good raspberry crop this year.

The apple trees will also benefit from a bit more sun.  I had hoped to prune them this spring but upon doing some research, I learned it is best to prune them in the winter.  So, I will let them go this year and plan to do a big pruning job next winter.

We also purchased a new, enclosed, outdoor compost container from the city in preparation for the chicken manure we will be composting.  I have a lot to learn when it comes to effective composting. I've got the indooor vermi-composting down, but our existing outdoor compost pile is a  poorly maintained heap.  I'll have to add "creating properly balanced compost piles" to my list of things to read up on.  Feel free to share any great resources or knowledge you have in the comments.  I hear a mixture of greens and browns is in order as is proper moisture levels and frequent aeration.  Do you really have to do that or is dumping compostables as you have them and neglecting it a viable strategy?  

The sweet woodruff I planted inside a ring around the apple trees is thriving.  The 3 starter plants I placed inside each ring has nearly filled the space and flowered after just one year.

As for our main vegetable garden space, we are trying some different strategies this year.  Leading into the season, we drew up plans that took advantage of companion planting.

We combined the trellises that used to lean against the fence into the configuration they were originally intended to be used (A frame) and planned rows of peas along the outside, a cucumber hill in the middle, quick growing greens (arugula, spinach, radish) beside the center mound and sunflowers at each corner.  We have 2 sets of that configuration with a different type of cucumber in the center of each one.  We also paired rosemary with bush beans and carrot seeds with tomato plants.  Stand alone arrangements happened for purple tomatillos, purple pole beans, hops, and collard greens in this part of the garden.

In this shot of the same area of the garden, you can see the rings that Paul planted his hops in.  So far squirrels have destroyed 2 of the 3 plants so this year might have to be called a learning experience.  We will have to come up with some ways to protect the buried rhizomes and sprouts next year.

After reducing my rhubarb patch, it is still too crowded!  I will have to be more aggressive when it comes to dividing the plants next year.  I am also trying a new plant in a space next to the rhubarb: horseradish!  I hear it can be quite a spreader, so I just put in one bare root to start the area out.

In addition to a different configuration for planting, we also skipping tilling this year in favor of broadforking the soil in the areas we planted.  It seemed pretty effective, so we might be investing in this tool.  We have been renting a tiller but the place we rent from went out of business.  We found a different place to rent a broadfork and are using this year as a test run for that technique.  It definitely felt good to turn the soil without killing so many worms!  And, even though the broadfork is a manual tool, it felt a lot easier on our bodies than the gas tiller does.

The annex area of the garden beyond the rain garden/flower area is being put to heavy use this year.  We have broccoli, brussels sprouts, mustard greens, tuscan kale, blue curled scotch kale and red chard planted in that area.  I planted it pretty tightly so we will have to access the broccoli and brussels from outside the fence and the greens from the walking path and a few strategically placed bricks.

I am a really big fan of the straw/hay mulch.  Too bad the straw bale gardening trend caused the price of a bale to double this year!  I still bought it, though because it really does cut down the weeds and reduces the need for watering as often.  A nice bonus is that the dirt from your garden stays in your garden instead of gluing itself to the bottom of your shoes.

The spring onion patch close to the house has been replenishing itself each year.  I am usually pretty forgetful about using them but this year I have been trying hard to get more use out of it.  It is the first crop I get each year, followed closely by chives and rhubarb. I also planted a few nasturtium plants between the tomato plants.  I hear they are a good companion for tomatoes.  I haven't had the greatest luck with nasturtiums the past two years, so I am hoping this year they fare better.  If they do really, really well, I might pickle some of the seeds.  They are like capers when pickled.

Since we don't have any dogs in our backyard this year, we expanded our growing spaces a little.  There are a few tomato plants and nasturtiums in the wooden frames near the deck and a few things in pots on the benches (basil, 3 kinds of mint that will eventually go in a raised bed and 4 shiso plants).

I started a few basil plants inside and then put a bunch of seeds in the earth box.  Paul said he really wanted a huge basil crop, so I packed the earth box full of seeds.  In fact, I think that is sort of our theme this year: crowding!  I hope the strategy pays off.  If it does, it means easier watering, less weeding and a plentiful harvest.  I never did like thinning anyway :)

After I get a few more things done in the front yard, I'll share some photos of that, too.   Thanks for spending some time with me in my garden.

Patches

This week is an interesting (and uncomfortable) one that I really hope will end with some answers to my ongoing health drama.  It started out Monday morning with a 5.5 hour appointment at the patch testing clinic. I was happy/nervous to be there as I had waited over 2 months for an appointment yet I was pretty certain that it was the start of a difficult week for me.

Per clinic instructions, I had to bring in everything in my house that could have come into contact with my skin over the last 5 months.  I was tempted to bring the cat along, too, but I didn't.

They made up patches using some standard panels and a lot of my own products. A grand total of 210 patches!  The panels include the standard panels, cosmetic ingredients, sunscreen ingredients, steroid ointments, textile dyes, common ointment vehicles and lots of my products.

Then they stuck them on me and put multiple layers of tape over the patches. Typically patches are applied to a patient's back, but since my back is so "involved" (i.e. full of rashes/irritation) they had to use the tops of my thighs as the primary site and then put a few on my back as well.  When the patches and tape were applied, I was sitting down with my legs bent at a 90 degree angle.  When I tried to stand up, I couldn't straighten my legs without it feeling like I was getting a snake bite (that thing where someone twists your skin in 2 different directions and it feels like you are getting burned).  I pointed this out to the women who applied the patches.  She apologized and called it a "learning experience" for her.  She said I was stuck with the current arrangement because removing or re-positioning the tape would mess up the test.

This is the same woman who complained incessantly while she was in my room and especially while applying the patches.  She shared that it had taken so long to prepare my patches (I waited in the room by myself for over an hour, maybe even 2 hours, while they created the patches) because the person she has helping her always screws stuff up.  WAY TO INSTILL CONFIDENCE, LADY!  If I seem particularly disgruntled in this post it is only because I have to stand with the posture of an arthritic 90 year old for 5 days for test results that may be "screwed up."

Oh, and then there is the part where she gave me a passionate lecture about all of the things I am not allowed to do this week including dressing myself or lifting things.  These limitations are because those activities might mess up the patches and my mandated priority this week is to not mess up the patches.  Her lecture would have seemed more earnest had she not immediately left the room, instructing me to get dressed on her way out.  Plus, while she was away she was getting my products from home so that she could return them to me.  At which point, I was expected to re-pack and lift my heavy suitcase.  So, yes, immediately after telling me not to dress myself or lift things, she forced me into a situation where I had to do both.

I am a rule follower by nature and get a little anxious when I break them.  Plus, at this point in the day I was feeling a little loopy.  The cause for loopiness was probably a combination of hunger, having spent over 5 hours in that little exam room (most of the time by myself), and being in the midst of getting used to my snakebite legs and mattress back (more on that in a minute). All of that to explain the feeling that I had, the feeling that after I broke her rules, that she might come back in and yell at me for getting dressed and tell me I failed her test.  I was brave though, I broke those rules and I've done it again since then.  Bam.

And that suitcase?  When they returned my stuff after using it for testing, they hadn't closed the lid on my giant, concentrated, liquid laundry detergent bottle.  So, by the time I opened the suitcase up at home, there was a lake of laundry soap mixed in with all of my stuff and soaked into all of the nooks and crannies of my suitcase.  I think I could rinse that suitcase for hours and more soap would still come out of it.  Fun times.

In case you are wondering, in addition to the regular patches, I have some interesting things attached to my body this week.  Including a snippet of yarn from the project I've been working on throughout the summer/fall.  And, this one is really goofy: I have mattress parts taped to my back.  We need to replace our mattress but I am afraid that whatever new one we buy will end up triggering an allergy and we will have wasted lots and lots of money and have nothing to sleep on. So, the fancy, natural mattress store gave me samples and the doctor cut away parts of the natural latex pad, wool batting and cotton casing fabric and taped them to me for the week. If I don't react, we can finally replace our 13 year old mattress!

In addition to the mattress info, I am really, really hoping to get useful information from the tests.  If I allow myself to really dream big, I hope to identify what caused this whole health spiral to start in June and to find a way to prevent it from ever happening again.  If you have any good mojo to spare, please send it my way this week.  I'll just be here, with my legs bent at a 90 degree angle, trying not to lift anything or change clothes.

Raspberry Preserves

I did end up making raspberry preserves with the plethora of raspberries that I picked in my dad's patch. I searched for some low sugar recipes after learning this summer how jellies and jams oftentimes have more sugar than fruit in them. That just felt obscene and I vowed to seek out alternative methods and recipes. I ended up modified this recipe from the Boston Globe who modified it from Afton Cotton.

INGREDIENTS

1 1/2	cups granulated sugar
1	package (1.75 ounces) powdered pectin
6	cups (a little more than 1 quart) raspberries, rinsed, picked over, and drained
1/2	cup brown sugar
6	tablespoons lemon juice
1	teaspoon vanilla extract

INSTRUCTIONS

1. Have on hand 5 half-pint canning jars. Sterilize them in boiling water. Sterilize the lids and rings, ladle, and any other equipment that will touch the jam. You will also need a canner and a jar lifter. Fill the pot with water and bring it to a boil.

2. In a bowl, combine 1/4 cup of the granulated sugar with the pectin. Stir well.

3. In a large saucepan, combine raspberries, remaining 1 1/4 cups granulated sugar, brown sugar, and lemon juice. Let stand for 10 minutes or until the juices flow.

4. Add vanilla. Stir gently and bring the mixture to a boil slowly over medium heat.

5. Stir in the pectin mixture. Turn the heat to high and boil vigorously for a few minutes. If you have a candy thermometer, you can test to see if it has reached 200 or so degrees F. (This recipe originally said it had to reach 220, but I didn't get it that hot and it jelled just fine.)

6. Pour mixture into hot, sterilized jars, wiping down jar rims with a damp paper towel. Place lids onto jars and screw on bands, and place the jars in the canner, making sure the jars are covered by 1 to 2 inches of water.

7. Bring the water to a boil over high heat. Process the jars for 15 minutes.

8. With the jar lifter, lift the jars from the pot. Place them on a clean kitchen towel and listen for the sound of success: POP! Let stand for 12 to 24 hours or until completely cool.

9. Test the seal by pressing down the center of the lid with your finger; it should not move. If it didn't seal, you'll just have to eat that one right away.

The resulting preserves are both tart and sweet. I like them much better than the really sugary jams.