Wednesday, October 23, 2013

The Uphill Climb

I promised you that I would be honest.

Well, settle in friends...I'm about to be honest, and this isn't going to be so pretty.

Today, I want to talk about what it's like to be an allergy girl.  The fact that this has a direct impact on my creative life makes it very relevant to Green Woman Comes Knocking, and after holding back for quite some time I have rather a lot to say.

Three years ago a chance encounter at a church camp changed my life, starting me on this crazy allergy journey.  If you'd like a reminder of exactly what I'm dealing with, I'd encourage you to look back at the three posts I wrote just after my initial diagnosis.  There's more to add...but we'll get to that in a bit.

It's been a long while, since I've written about my allergies.  Do you remember when I mentioned a nasty habit of self-editing to avoid criticism?  Yeah...we'll blame that.  It became pretty hard to write something positive, and so I just stopped.  I was struggling to cope, and embarrassed that I hadn't managed to do better.  As it would turn out, silence is crushing.

I want to be clear that I am not playing a victim card or looking for pity and sympathy.  My situation is what it is, and I am merely acknowledging that.  If I have any chance of making things better, I really do need to speak my own truth.  The truth is that it's a very steep uphill climb, and I struggle every single day.

First, though, I would like to start with something positive.

I love my allergy drops.

I love my allergy drops more than I can possibly say, and I cannot thank my doctor enough for the gift of being free of my seasonal allergies.  For sure, that has been the absolute best part of what's happened and the importance of it cannot be understated.

Gone are the horrendous twice a year 'colds' that would morph into a month long case of bronchitis.  Gone are the weeks of sleepless nights caused by so much congestion that I couldn't breath.  Gone are the coughs that were so bad that I feared I'd break a rib.  Gone are the itchy eyes, the stuffy noses, the runny face and the sneezes.  Gone.

Now...I *might* need to take some mucinex for a few days.  I *might* need to use a saline rinse on my nose once or twice.  Both are very effective treatments with no side effects - a major improvement over years and years of OTC and prescription allergy meds that did nothing to relieve my symptoms but which often left me feeling woozy or off-kilter. (Ahem, in one case, higher than a kite.)

I've also had to make a few lifestyle changes to build upon what the drops are able to do.  For example, we no longer can leave the house open to fresh air during the spring and fall, and I have to ask my parents to use the furnace instead of their wood stove when we visit in the winter. I consider these things to be very minor prices to pay.  After all, I've gained considerably more than I've lost in this area.   Besides, if I'm careful I can still spend as much time outdoors as I'd like!

If only it were all that simple and good.

My struggles with my food allergies are pretty gnarly, and truth be told I lose more often than I win.

Take a moment to imagine that you are in my position.  You discover later in life that you have major food allergies, and you must give up all but meat, veggies and a bit of fruit.  The no-no list from the doctor reads like a horror novel (Yes, it's that long!), and when you tell friends and family about your new restrictions you frequently get shocked, "What the hell are you allowed to eat?  Anything?!"  On the one hand, you are delighted because the diagnosis explains 20 years or more of health issues and promises you a future of better health.  On the other hand, your entire life is going to have to change...and you are only just starting to understand what that is going to entail. It's quite frankly overwhelming..and exhausting...and frustrating...and maddening...and depressing...

Here are a few of the issues I've run into in the three years since my diagnosis, in no particular order:

1.  Eating out is ridiculous.  While yes, there are a few options out there, I generally find it joyless.  It's also more than a tad pointless to go out when I can fix the same thing at home for considerably less, often with better results.  When we do go out, I find myself jealous of what everyone else is enjoying and annoyed with my own plate.  Hardly worthwhile.

2.  On similar lines...I miss ethnic food like crazy.  I used to love Thai, Chinese, Mexican, Italian...and all of that's totally off limits now.  When I do find myself really, really missing a food it generally tends to be something ethnic.

3.  I hated cooking prior to the diagnosis. Now that my food revolves around food and food safety in such an all-consuming matter, I hate it even more.  Sigh, and no one in my house is EVER happy with what I produce anymore.  If I cook for myself, they are miserable.  If I cook for them, I am upset and mad because I have to produce seperate food for myself.  It sucks. 

4. You would not believe the amount of time and energy involved in planning and preparation of food.  Failure to do so results in serious problems.  There's no such thing as winging it with food allergies.

5. Travel stinks.  I find that I have to pack most/all of my food whenever we go anywhere...and I need to be prepared to be hungry even with the best of planning.  This holds true for everything from church reunion to weekends with my parents. Even with the best of planning I often find myself surviving on minimal, repetitive, non-satisfying choices.  Again....I'm always hungry when I go places.

6.  Social events...ditto.  As a class A introvert, I was reluctant to attend many social events prior to my diagnosis.  Now that I have to deal with the food thing I find that I'm turning into quite the recluse.  It's just easier to stay home.

7.  I hate sticking out and being weird about food.  When I DO travel or attend social events I inevitably find myself having to explain...and I'm sick and tired of that.

8. It's been three years, and my friends and family still don't get it.  I love them, but I get tired of the pitying glances, the constant questions about what I can or can't eat, casual references to the fact that I'm left out, etc.  Just a few weekends ago someone I know spent a good 15 minutes quizzing me about the possibility of using alternative sweeteners...despite the fact that I've had the same conversation with this person multiple times.  (No sweetners means just that....NONE!)  Don't even get me started on 'Well I could NEVER...'  The truth is that yes you could, if you had to or wanted to.

9.  And the truth is, often I can't.  I'll admit, I don't make it easy for people because I've mucked up and cheated so much that I'm sure they are confused. This is a daily struggle for me, and often I fail.  When it gets right down to it - and my allergist will back me up, as will recent research - sugar and carbs are addictive, and when it comes to sugar I have a serious, serious problem.  Don't believe me?  Yeah....hold my hand through the detox process sometime. 

10. The other part of the problem is that people just flat out don't understand food allergies.  Unless you have anaphylactic responses, they don't think it's 'real.'   It's very hurtful to know that your loved ones think you're making it up.

11.  Likewise, because what I've learned about food in the last three years runs so counter to the traditional American understanding about health I tend to get a lot of crazy pushback.  I'm pretty sure people want me to be wrong because at some level they feel threatened in their own understandings.  Great...that doesn't mean you have to make me out to be an idiot.  If you ask me questions, I'm going to explain what I know.  I do NOT need a lecture then about why I'm wrong - and by extension, why my doctor is an idiot.

12. There is a lot of division within the allergy community. I spent some time online trying to get more info/find some support.  What I found instead was a lot of angry people who are dismissive of the type of allergies I have because I don't have full blown anaphylaxis.  I get it....they (or their children) have life-threatening problems and they feel as if mine make people complacent about allergies in general.  However, it's disheartening.  (As a bonus...I find the title of the allergy magazine "Living Without" to be horrendously depressing.)

12. My doc did introduce me to the world of paleo - a diet she thinks is quite frankly the best place for all people to begin - but even then I have so many MORE restrictions that it's hard to fit in.  (I will say, though, that the paleo community in general is a heck of a lot more positive and welcoming than the allergy community, so as frustrating as it is sometimes I'm glad I've found it.)  Paleo is all about seeking the best nutritional options - but many, many of their most advocated foods are things I can't have.

13.  One of the crazy things about going clean is that once your body starts to heal you discover more problems.  It's a process known as unmasking.  Some of my own unmasked problem foods include avacado and coconut (which do cause scary swelling and tingling in mouth and throat), an aversion to nightshades (tomatoes, peppers, potatoes) that indicates an allergy, a sensitivity to eggs and lamb and a probable problem with nuts.  (Not supposed to eat nuts anyway with the yeast allergy...but when I have, I can't stop.  I've discovered that any food I can't stop eating is a problem food.)  At this point I'm scared to death that it's never going to stop...that I'm going to end up only able to eat three or four things that I must carefully rotate so as not to die.

14. We've tried to get the kids onboard with the paleo thing because of their own sensitivities and allergies...but it's been an uphill battle.  I'll save the details for another day....

15.  Food isn't pleasurable anymore.  I have so little pleasure in my life that it's a huge loss.

16.  You try celebrating a holiday without special food.  Yeah.  Totally sucks.

Sigh...are you sick of me yet?  There are two more things I need to get through, and then I'll shut the heck up.


A year ago I had my gallbladder removed.  I do not at all regret that decision because I was starting to deal with a lot of back pain, and I knew I couldn't live like that.  I've also since realized that at least part of my tummy pain over the years has been related to the stones.  My surgeon honored my request and saved the stones so that I could actually see them.  Having seen the little demons, I am glad they are gone.  There were a lot, they were ugly, and they were the size that could potentially have caused bigger problems.  Again, no regrets.

However, my system is still struggling to adapt.  I will not gross you out with the details, other than to say that in the year since then whenever I've been compliant with my allergy diet I've been really sick.  I've gone up to two months in that state - losing a great deal of weight very quickly and generally feeling pretty awful.  When I add in a few of the things I'm not supposed to eat things even out a bit.  Honest to God, I'd rather live with some of the allergy symptoms than be as sick as I've been.

It's a lot to deal with.


You might remember that a few years ago I served as a spinning judge for an alpaca show.  I spent six weeks working an average of 4-6 hours/day with alpaca fiber - a job that I truly enjoyed, and took very seriously.  Those of you who know allergies, though, know that the quickest way to trigger a new allergy is to overexpose yourself - and that is exactly what I did.

Sure enough, when next I picked up alpaca fiber it felt like I was handling bailing twine.  It's a very disconcerting thing - to know in your head that something should be soft and fabulous, but to have your hands trying to tell you something completely different. I didn't realize at first what was going on.  I just thought that I had just gotten ahold of a bad batch of fiber.  When that experience repeated itself with alpaca from a variety of sources....well, the truth became obvious.

For a very long time, the allergy remained purely a contact problem.  I gifted all of the handspun alpaca yarn I had made, and sold or gave away all of the factory spun yarns and fiber that I had in my stash.  Simple touching, no problem.

If only it had stayed that way...

It changed last fall when I attended the annual holiday exhibition and sale for my  beloved guild.  I spent the morning outside of the hall, demoing knitting, and then I went inside to look at all of the wonderful things the guild members had made.  Have I mentioned we have an unusually large number of alpaca producers in our guild?  Ten minutes.  Ten minutes during which I did not actually touch any of the alpaca items in the exhibition hall.  Ten minutes was all it took.

By the time I made it to my car it felt like an elephant was sitting on my chest.  I popped an emergency Benderyl right away (I've been carrying both it and an EpiPen in my bag since my diagnosis), but the damage was done.  My lungs hurt, and I was sick for the rest of the day.

Since then, it's become apparent that I simply cannot be in a room with alpaca fiber. The handfull of trips I've made to yarn stores has resulted in the same reaction to varying degrees of severity.

Then, last week I pulled one of the two alpaca shawls I still had out of the drawer.  It's a beautiful thing - a mossy green fingering weight in the shape of a V which I had worn often before the alpaca thing started.  I loved it, but I didn't dare wear it anymore.  As often happens, it had whispered the name of it's new owner to me, and I needed to pack it up because I knew I would see her that weekend.  I handled it for less than five minutes...just long enough to hold it up, admire the pattern, fold it and take it out to the kitchen.  My throat and mouth began to itch and swell, my hands were burning and the elephant was back.

I don't mind telling you that I was spooked by how strong that reaction was.  It was pretty bad for so little contact.

Here's what truly scares me.  Remember how dad's sweater smelled last year?  The one I spun and knit with the wool from his sheep?  Yeah, that's the same smell I got from the alpaca long before I overexposed myself.  It was the first warning sign.  Friends, it's not's when.  If I had to guess, I'd say that I'm at risk for developing an allergy to all animal fiber.  For sure I've had the early signs of a problem with the wool my parents raise, and if I'm not careful I'll land myself in the exact same position with wool that I'm in with alpaca.


Given all of it any wonder that the depression monster is back?

Last Tuesday I went in to my allergist's office for new vials of my allergy drops.  While I was there I was able to speak to my doctor for a few minutes about how sick I've been when eating clean since the surgery and the alpaca problem.  I'm now keeping a food diary to see if we can pinpoint the problem, and she has given me permission to add some brown rice and quinoa into my diet to see if they help.  As to the fiber...well, I need to pick up some masks.  I'm now to wear one if I chose to go into a yarn store because that will help with the lung issues.  I'm also to wear a mask every time I sit down at my spinning wheel.  My sense from our conversation is that a mask might help to delay it...maybe.

Bless my doc, she's fully sympathetic.  She has to wear a mask and use meds to work with her beloved horses, so she knows what it's like to have a problem with something so ingrained with your identity.  It still hurts.

What's even more worrisome...for the first time ever I reacted to the new vials of drops.  It was minor - a very small elephant on my chest - but it was enough to land me an extra 20 minutes at the office with benedryl, a quick listen to my lungs, and a brand spankin' new perscription for an inhaler.  I have to go back this afternoon for drops again. Who knows what will happen if I react again. (In fact, I did go in yesterday, and thank GOD I was fine.)

I spent all of that afternoon crying.

And then I started to write.


Kate (Cathy Johnson) said...

Oh, sweetie, I am SO sorry. As far as I know, most of my allergies are either minor or yep, the anaphylactic type (and sometimes peope argue about THAT--"Well, I hardly think that would KILL you..."). I can only imagine how limiting this must feel! And I do sympathize, on going out to eat. Sometimes it IS just simpler to know exactly what you're getting without having to worry about it...

BIG hugs...and thank you...

Carrie said...

Beautifully spoken pain. Stuff sucks - but you still manage to be inspiring and amazing.

Trish said...

If you feel it, it is real. I'm so sorry you have to deal with it. Keep talking about it. Might make you feel better. Trish