275

Me before I began this healing journey.

This journey has had so many ups and downs, it is hard to even quantify them all. But some of the mile markers recently have been the most emotionally vertigo inducing.

We have a Honda Minivan, because an ex was obsessed with not buying an American car. It wasn't a great answer, at the time. It was expensive, and cars made by tiny Asian people tend to completely fail to accommodate differently proportioned Americans, let alone very overweight ones.

For a lot of reasons that mostly involved being exhausted with battling and not really having my needs respected, I eventually just gave in and said it would do. It was one of those dumb things that those of us with autoimmune disease are prone to do. Eventually we're just trying to make everyone else happy, because we can't find a way to meet everyone's needs, and those around us are busy pushing back on all of ours, and we're exhausted.

In retrospect I can see all the stupid parts of that decision. But one of the more frustrating consequences of it was that, the seat belts never worked for me. I eventually gave in and went on a quest for a seat belt extender. It's humiliating enough to be stuck with a foreign car with short seat belts made for 120 pound people, and to need a seat belt extender. But had I known at purchase time that Honda doesn't even make such a thing to meet the needs of their customers and refuses to care about fat people's safety on the subject, I wouldn't have okayed the purchase of the car, even with my tendencies to try to make peace.

That left after market and third party options. There was an extreme lack of them, which just further emphasized the humiliation and helplessness of the problem. Everyone likes to tell themselves they would never get that heavy, that it's a set of choices I was making, that maybe I just needed to get off my butt and pass on the potato chips. They tell themselves it can't happen to them. But I assure you that I could follow all that advice, and it made not a bit of difference. If anything, following that sort of advice became an unhealthy form of self torture based on the constant fear of it continuing to spiral out of control. And the more I yo-yo'd the more extreme the rebound every time. And so I did what all those trusted authorities and our whole culture seems to believe in. Only it wasn't working.

And so that left me with hours of web searching, just to be a little bit safe driving the car, and not having to listen to that infernal behavioral modification system of beeps telling me “You're too fat!” or be in pain from a belt too tight. I did finally find one. But no sooner had I gotten the stupid thing, than it was recalled for safety reasons for not always latching well enough.

The problem was that there were no other choices other than having someone pull apart the car and start from scratch on a belt. So I just kept using it, trying to remember to double check that it was really latched firmly. But it wasn't really safe. It wasn't really okay. It's not okay that this isn't a standard device in this country. It's not okay that the trade agreements and chemical agricultural phenomenon have so screwed up foods that anyone here needs it to be a standard thing in this country. And it's not okay that we're left in that ignorance to just face the shame of trying to find non-existent, after market parts for our cars to cope with the consequences of choices we were not genuinely consciously making, and wouldn't have made, had someone been able to explain what on earth was going on.

It becomes a form of cultural gas lighting. It is so clear that we are not allowed to be fat that we learn not to talk about it and blame ourselves. Every moment is defined by the problem, and constrained by it, and we try desperately in every moment to please all the rest of you by following your rules. But those rules are lies. They are things that work in healthy people who aren't as sensitive to being poisoned by the disaster we call a food system. And so we absorb the shame and turn it on ourselves, believing we must just be too weak. But we're not. I have news for you. We, in our fat bodies that many of you find repulsive, are probably some of the strongest people you will ever meet. Every day that we don't end it in despair is a day that we prove we fought harder than most will ever understand. And we do it every day, one more time, while things spiral further out of control, and while we are genuinely helpless to stop it in that moment in time.

I can say this because I finally have found the understanding. I have finally spent enough years of my life reading medical journals and firing doctors to finally get to a place where I forgot to grab the extender, in a hurry the other day, and discovered that I don't need the horrible recalled reminder of all that victim blaming.

So it is with relief and exhaustion and much heart pain that I finally say goodbye to this little death trap I no longer need. But that process made me realize it had been some weeks since I weighed in.

So I stepped on the scale, and blinked, with tears coming to my eyes. 275. Maybe that still seems like a lot to a lot of you. But what it was for me, was a weight I hadn't seen since I started college. The weight is still coming off. There are interludes of wild fluctuation when I am fighting a virus or otherwise inflamed for some reason. But overall, it's just falling away.

I finally had to give in and go shopping for some winter clothes. I haven't wanted truly winter clothes, other than a jacket, since I was a child. Most of the time I was too warm, if anything. But suddenly I am cold when the weather changes. Suddenly I have some glimpse of what it's like to not be miserably inflamed all the time, for those of you lucky enough to spend at least some of your life that way, or with less extremes of inflammation, so that you can still tell the difference.

It was weird to go shopping for the first time in years, really, for anything other than a bra here and there. Mostly I had to order my clothes online, because the inflammation and weight spiral was so out of control. I actually got to use dressing rooms again, and have a girls day out, and … wait for it … feel pretty in something I picked. I could even shop expensive brands in outlet stores and find things hanging on the rack that fit me.

I am not done yet. There is more to this journey, but 275 was a bit of magic I hadn't even dared hope for when I started this. It was an impossible desert mirage, a lie our culture believed in, but that I couldn't risk more heartache to believe it. It was a cruel number. A hopeless number. A pipe dream, and a curse, and, now...finally...a relief.

So I stood there in tears, wearing a size I haven't worn since high school, weighing what I haven't since college. And it also made me realize that while I still have denser fat to loose, I have lost so much inflammation that I am now a size smaller than I was the last time a scale read anything of the kind.

Me today in a little too much sun.

Me today in a little too much sun.

There are people out there who believe this is a problem of all kinds of things, but the truth is that being overweight, for a lot of us is no more and no less than the inflammation and ignorance trap we can't find our way around. But have hope, my friends. If you can find enough of the pieces of your personal puzzle, like I have, you too may find yourself in tears of relief and rage and hope as you stare at your own personal 275, and turn away to toss your own personal reminders of that trap you feared you'd never escape. And you are absolutely right in your heart of heart that knows and fears that all that advice to eat healthy grains, and work out more, and all the rest, are really dead wrong for you. But you have to decide to stop the cultural abuse and find your path. Good luck. And know that my heart is with you, and that your pain is real, and totally undeserved.

K-9 Discovery, Cat Allergies, and Mast Cell Madness

So back in my early 30s, we owned dogs.  I never had them growing up.  We were always too allergic.  But I went through a stage where I wanted critters around, big time, and my experience with cats had made me think I could take on anything.

I used to be incredibly allergic to cats.  I was so allergic that if I pet one and touched my face, my eyes would swell shut.  But for a relationship, and in full ignorance of my larger mast cell activation disorder, I took on trying to live with cats for someone I loved. 

We had an excellent vet and this was during a time I had one of the few basically decent doctors I have had in my
adult life, and between the two of them and things they suggested, I managed to live with cats.  I basically lived on antihistamines, and did a lot of things to make the cats less allergenic. 

I thought, over time, that I had desensitized myself to cats.  But in retrospect, I have recently realized that at about the same time, we had a cat with serious anxiety and skin issues.  And I have never been a person to give up easily.  I didn't want to have to turn her over to the humane society.  I felt responsible. 

So we did a bunch of things to try to help her adjust.  We worked with the vet.  I read behavior books voraciously.  We tried a lot of things.  At the end of the day, she was a mess and I kept coming back to the fact that that she seemed to hiss all the time when her skin itched.  So that was clearly stressing her out.  She was a giant pain to manage to medicate.  Vet recommended attempts at Benadryl caused her to foam pink at the mouth, and left her even more stressed out, no matter how many times we tried.  So it finally registered to me that it might be a diet problem, based on something I read. 

So we changed their diet.  This was before you could get store brand grain free animal food.  This was back when you were considered the lunatic fringe to be feeding your animal a raw diet, or really anything other than the cheapest kibble on the market that didn't seem to cause urinary tract problems.  So it was a rare store that carried a grain free cat food.  But I found someplace that did, and we switched them all to grain free food, because we were free feeding them, and it was too hard to keep Silver separate and feed her the expensive stuff. 

And that was the same timing that I managed to ween myself off of the antihistamines all the time, and thought I had finally adapted to cat allergens.  Or at least these cats.  I still sometimes reacted to random other cats, so I thought maybe I was just used to mine. 

Well, recently I have been reading about how animal bodies react to foods they aren't meant to eat, and the fact that it may well be their antibodies to poisons that are actually what many people are allergic to.  So there is a good chance we've basically created allergenic pets by feeding them things nature never intended them to eat. 

That finally caused a lightbulb to go on for me.  I never
did get used to the dogs before they had to be put down for having cancer.  In all that time, I never adjusted to them.  I just thought at the time that in 6 years with those dogs (we adopted 6ish year old adult dogs), I never adjusted, so I must be more allergic to dogs than cats. 

Well, we've been asking the question of whether my immune system changes might make dogs possible again, for various reasons.  I didn't want to take them on if I was still reactive to them, and my doc said basically the same thing.  So we managed to switch the food for the dogs in question, clean them well, and I just spent a full day with them without a single histamine reaction, even when one accidentally scratched me trying to move about, given his blindness.  Normally that would have turned into a big angry welt. 

But then, normally dogs are fed cheap, grain based garbage as food, as were most cats.  Turns out that I appear to have never genuinely been allergic to dogs and cats.  Turns out that I am allergic to wheat, even when processed through an animal that wasn't meant to eat it.  At least that is the best explanation I can come up with for why I can spend a full day without a single reaction to multiple dogs, even without a desensitization period.  It is the best explanation I can come up with for why I still react to some random cats, but not all of them. 

So if you're out there with a cat or dog allergy, and trying to understand the puzzle as it relates to your immune system madness, it might just be wheat.  And if wheat is causing animals to produce enough antibodies that they can make humans react as strongly as I used to, there is a very good case to be made that none of us should be feeding our animal friends, who don't consider grass a primary part of their diet, any grain product.

I am still a little bit stunned, but not a hive in site, and not a single drippy eye to be found.  I have healed a lot from diet, but I am still getting mast attacks.  They are changing, and less severe in many cases, but I have every reason to believe I should be a swollen mess right now, only I am not.  And the dogs were healthier too.  

More Pieces In The Histamine Puzzle

I have found a lot of advice about histamine issues to be much too simplistic, and when I try to eat in a low histamine way, I don't do as well, overall.  But I have still been struggling with histamine issues.  I am working with the doc to figure out various things, but in the mean time, I experiment and read, and slowly put the puzzle together.


I have said that I think the statements are probably misleading that all fermented food is a problem for people with histamine issues, before.  I have observed fermented food soothing my histamine issues in some cases, even when they seem to irritate them initially.

Really, the problem is that food is a complicated set of substances and we're looking for simplistic "avoid" and "eat" lists to function from.  But we lose a lot that is useful in that oversimplification process.  The following is one example of why it is likely that we need to be much more thoughtful about this question and not toss the baby with the bath water.  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3398942/

 Other reasons that ferments tend to work for me probably include some of what I ferment.  Many foods function as mast cell stabilizers or in other ways that create a positive impact in terms of mast cell management.

Garlic harvest from my garden last week.

As a few examples, I uses a lot of nasturtium flowers and leaves in my diet.  Also I use water cress which is in the same plant family.  Both seem to help my issues.  I use onions and garlic in nearly everything.  I also use basil, thyme and tarragon in most things, all of which have been show to help with mast cell stabilization.

And in sweet ferments, I often add some of my garden chamomile flowers that I dry every year.  I also add ginger to most, as well as mint and nettle to some.  All of those have positive effects on mast cell problems.  I also use apples and peaches which both help with mast cell stability.

I also do a lot of things with pineapple, because of its anti-inflammatory properties.

Also, I eat a ton of dried and fresh oregano.  It contains both luteolin and quercetin, which help with mast cell stabilization.  Anything with those bioflavones are a good bet for helping with mast cell stability, really.  Other examples that make it into my ferments and diet on this subject include raw dock leaves, radish leaves, arugula, dill weed, cilantro, and fennel bulb.

Lovage, blackberries and horseradish leaves are all great sources, too, and horseradish and lovage are things I have added to my garden and eat regularly, because you can't find them in the store.  There are others, as well.

Lovage and horseradish 

But I really believe part of the success case for managing mast cell issues is relearning a lot of the lost cultural knowledge about food combinations.  I think part of the reason my ferments seem to help is that almost all of them include something on that list, or not included, but also good at mast cell stabilization.

And I have noticed that how well my liver is functioning, and whether or not my omega 3 levels are in balance also matter a great deal.  I also have much less trouble when I manage to eat liver a couple times a week.  All of those things together tend to help a bunch.  If I am having a super rough night, I will then take an extra vitamin C (not sourced from grains!), or make myself a tea from nettle, honey, mint leaves, and chamomile flowers.

So far, all of that is helping me manage the histamine reactions, and since really nailing this stuff, I have seen the weight loss really ramp up in rates.  I think it is possible that histamines were the primary problem with my utter inability to lose weight.  Now that I am getting the whole thing under control, the pounds are falling off.  As of this morning, I have lost 168 pounds since I started eating this way, and have not gone hungry once.  And that fact has also helped reduce my stress level, which probably isn't hurting either.

As you go about your quest for healing, be careful out there about oversimplifications.  And also, I have found with histamine issues that I have to try something off and on several times to get a good sense of what helps and what doesn't.  When I eliminate based on the first reaction, sometimes I find that my body had a strong response because things were so out of balance, not because of a genuine allergic reaction.  So I do better on the sum total of the data I can gather of several attempts at different times of day, and combined with different foods.  That is one reason I have kept such diet diversity, where a lot of people are down to a couple foods they feel safe eating.  This isn't a simple problem, and we have to puzzle solve in this game of 3d chess, not try to simplify the problem to tic tac toe.  Good luck out there. 

For those looking for more info on foods rich in these substances, here are a few links.  http://www.quercetin.com/overview/food-chart and http://secretsofnaturalhealing.blogspot.com/2010/12/luteolin-rich-foods-shown-to-reduce.html, and http://nutritiondata.self.com/foods-000138000000000000000-w.html, http://thescienceofeating.com/2015/04/02/foods-that-help-stop-seasonal-allergies/

Important Healing Things

One of the things I have struggled with so much on this healing journey, is the number of people who have basically told me I am full of it, in one way or another.

One of the things you have to learn early, if you want to take back your health, is that everyone is just going to doubt you, claim your sources aren't good enough, and cling to 10-50 year old science as though it was carved in stone tablets by God, himself.

I happen to be a person who can bear up under the load of that doubt for some time, somewhat better than the average people struggling with health issues, I think.  But even I am not made of steel.

I listened to an interesting public radio piece the other day on This American Life, (http://www.thisamericanlife.org/radio-archives/episode/590/choosing-wrong)  about why people make bad decisions that they know are bad decisions.  It talked about how some people have different thresholds on their willingness to deviate.

Those of you who know me, know that I have spent a lifetime on deviating.  I have low patience for doing things the way everyone says I should, when the results don't match.  So unlike Wilt Chamberlain, if I find that I am more successful throwing 3 pointers underhanded, I am not very likely to go back to throwing over-hand for fear of perception of others.

Sometimes it sucks to stand out from the crowd.  And even as good at it as I am, I still get exasperated at the people who imply that what I am doing must only work by placebo, or that the references I post on my Facebook feed are not sound enough, when I post the lay person readable version, rather than the medical journal I read first.  I get this a lot, by a lot of sources who don't realize they are condescending and making sweepingly inaccurate assumptions that it is the only thing I have read on the subject.  I have learned, over time, to just roll with it, and consider it their own baggage with themselves, but it isn't always easy.

One of the subjects where this has come up for me, is enzymes.  The science is rolling in, but most of the time when I post science papers, I hear crickets of silence.  So I have been known to suggest to various people that they read a book I read about enzymes and autism.  (https://www.amazon.com/Enzymes-Autism-Neurological-Conditions-Updated/dp/0972591850)  I don't suggest this book because it is the paragon of science tomes.  I suggest it, because it is imminently readable, and perfectly in keeping with the science not funded by big business, that I have read, even if not being a deep scientific treatment of the subject.

One of the things it does talk about, though, is that the enzymes from Houston Enzymes are somewhat unusual. (http://www.houston-enzymes.com/)  They were developed by a man who was at the top of his game, when a group of parents of autistic children approached him for help.  And unlike most of what was available on the market at the time, it created miracles for a lot of these young people when combined with a gluten free and casein free diet.

I have been diagnosed with ADHD.  Some of the scientific community consider ADHD to probably be on the autism spectrum.  And that is how I came to read things about autism, looking for clues.  At the time, there was partial theory of the reasons it might be working as well as it was for some.

Over time, I have found more evidence, and one of the things I think is probably relevant for why it matters to me, has to do with viruses and how they function.

I have changed a lot of things in my life. Maybe most of them were necessary, but one of the things I did several years ago was add the enzymes listed above, because of the research on it, and the way the company's enzymes have been vastly more effective than any other brand, in autism circles. I paid the extra for these enzymes. 

 I could tell they helped me, by themselves, but in retrospect, I realize the weight loss started at the same time I added coconut oil as my cooking oil or part of my cooking oil, at about 80% of my meals. 

I know that diabetes runs in my family, and have read about dementia because of my father's struggle with this problem.  Many consider dementia to be a form of diabetes of the brain.  I knew that coconut oil is an amazing alternative fuel for the brain and body when insulin resistance is a factor. Insulin resistance probably was a problem for me, given the years of self medicating the ADHD with soda, and the grain related addictions. 

So I started using coconut oil as my primary cooking oil for a lot of reasons.  At about that time, I finally had everything in line well enough to really see weight improvement.  

I have said before that doctors are wrong when they claim that weight problems are a calorie problem.  I have counted calorie, I have done all the things to lose weight that people claimed during all the 80s and 90s, to be the path to weight loss.  Only they weren't.  As far as I could tell, they were basically a way to torture my system and make me sicker.  

I have had so many arguments with doctors suggesting weight loss surgeries, and believing I wasn't trying hard enough about diet and lifestyle.  Many have flat out refused to believe me about much of it, certain I was lying about my eating habits, and just complaining too much about the rest.  

But I know gas lighting when it's pointed at me, and I don't fall for it anymore, even when the source is supposed experts.  So I kept turning down their surgeries and looking for answers.  Slowly I have put together a lot of pieces.  There are other factors, too, but I am reasonably sure that viral load was one of my ongoing problems.  Which virus?  I can't honestly say, other than ruling out a few that were tested for one reason or another.  But I can tell you that many of my worst problems followed a viral flare pattern. 

This is a halfway decent treatment of the subject of viruses while still being readable by the masses.  http://www.enzymestuff.com/conditionviruses.htm 

I fit the patterns perfectly, and it pulls together something I have read bits of in a lot of medical papers.  What do Alzheimer's, ADHD, autism, autoimmune disease, and various other of my personal issues share?  They all behave with a pattern very similar to a viral infection pattern, just interacting with different environmental factors, parts of the body, and genetics.  

So I switched to mostly coconut oil, and continued my expensive enzymes, while also eating a diet very high in nutrients to help with healing, and very low in things that drag on my immune system.  And that combination of things seems to have created some miracles.  They may also be impacted by other changes, but I believe these are some of the most necessary of the set.  

I am still losing weight, but to give you an idea, I lost 150 pounds in about a year and a couple months, without going hungry at any point, and with a higher calorie diet than I was eating before.  If calories are the important thing, that weight loss is impossible.  And yet my scale and my old doctor confirm that it happened.

Are there people out there trying to thin down for a wedding gown, who just need to lose 10 or 20 pounds, for whom a calorie is an important thing?  Sure, probably.  But when we're talking about serious obesity, diabetes and all the rest, we're not talking about the same sport anymore.  

And in my case, the weight, along with many of the other problems, like much of the pain problem, the migraines, etc, are all a side effect of inflammation.  Many things were keeping me inflamed.  Some of that list includes nightshades and grains, glyphosate, and other poisons sprayed on conventional foods, chemicals, and more (all of this has been confirmed by genetic test or, in the case of nightshades, by elimination diet).  But I believe, even before the nightshades and grains and all the rest were a problem for me, there was something viral going on.  

I was a sick kid, regularly.  I know my mother had cold sores, which I have gotten a few times in my life.  Maybe it was the herpes virus from birth.  I really can't say.  But I think, and current medical research supports the idea, that it may well have settled itself into my vagus nerve, and been a recurring nightmare ever since, making my immune system stay pegged, and causing a variety of other problems.  

So while I have changed many things, I think one of the critical things to my healing process was the combo of enzymes, which have been found to dissolve the protective coatings on viruses, and coconut oil, which has also been found to be a significant fighter of viral load in many different scientific circles.  

I don't say any of this to undermine the importance of the therapy or other things I have done.  Probably those were important too.  But I share this so that if you're stuck on your healing journey, you can consider a focus on how best to reduce your viral load and heal.  Perhaps it will be the missing bit of your health puzzle, too.  

And I say it so that those of you who are fighting this battle have a chance to hear from someone who puts up with the gas lighting all the time, that it's not just you.  It's not in your head.  Our culture's behavior toward pain disorders and autoimmune problems and weight problems is often, frankly, abusive.  We are the canaries in the mine, and we must decide to deviate from all the garbage big business wants us to believe is safe, in order to heal.  You will hear doubt.  People will be downright condescending and awful to you, because their threshold for deviation doesn't allow them to think outside their box.  

Take the risk anyway.  Throw that free throw underhanded.  Do whatever it takes to break the pattern.  Remind yourself that insanity is doing the same thing and expecting different results.  Try things.  I don't care if you read the idea on a napkin left on a bar one night.  If you haven't tried it yet, you have researched the risks, and you want to give it a shot, go for it.  Ignore the doubters who would rather live with their terrible free throw record.  And know that one of us out here is proud of you for your courage to keep trying new things until something works.  

By my definition, failure is accepting quick fixes that aren't, and settling for comfortable cultural defeat.  You can do better than that, just by having the courage to keep trying new things. 

Independence Salad (AIP, Whole30, Paleo)

I have been experimenting with salads and making more diversity happen, to help alleviate boredom.  This one came out tasty and pretty for the 4th of July.  Enjoy!   


Independence Salad

6 organic carrots

2/3rds cup dried unsweetened cranberries

½ lemon, end trimmed off, but not peeled
1 T cardamom (optional, omit for elimination AIP)
2 T cinnamon
1 inch segment of ginger, peeled
Pinch nutmeg (optional, omit for elimination AIP)
2 t tamarind paste
2/3 cup organic coconut shreds
Just enough water to mobilize the ingredients above in your blender

2 4.4oz box organic blueberries

1 cup organic coconut flakes

In a high speed blender, add the first 10 ingredients, chopped to the extent necessary for your blender, and blend.  In a bowl, add your rinsed blueberries and your dried organic coconut flakes.  Pour the contents of the blender over the blueberries and coconut, stir and serve.  Tasty, and super simple fruit salad to bring with you to that July 4th picnic.  Makes about 8 side servings.  

(If you have problems with coconut, omit the coconut shreds, add just a dash of oil to your blender mix, and rather than coconut flakes, pour over another dried fruit of your choice, or possibly chopped fennel bulb, as needed.  The coconut is here for texture more than flavor, so substitute as needed with that in mind.) 

Histamine Issues and Ideas that Deviate

I will start with saying I am not a scientist.  And this is not medical advice.  But over the course of the last 15 years, I have had to learn to dig through the science for the connections, in order to make my life tolerable, because the medical establishment has been nearly useless to my struggles, where I have managed to be pretty unbelievably successful at finding a path toward healing.

A lot of what floats around on the internet suggests elimination diets in reference to histamine issues.  I have MCAD (mast cell activation disorder) sorts of issues, and have had all my life.  And the standard advice doesn't work.  At least it doesn't for me.

One problem is that all the lists of foods to avoid are based primarily on people's self reported patterns, so any given reaction isn't all that consistently applied to all other people, and might have been a misdiagnosis of cause.  And food quality is a major issue, as well.  The same food fresh is much less likely to be a problem than it is when old, but our grocery phenomenon in this country means that we are very likely to be eating only old foods, and at best, randomly old foods, which haven't been treated the way our ancestors treated foods. 

I will give you a personal example of why this advice to avoid histamine foods isn't right for me.

Fermented foods.

One of the tests of a theory that I have developed in evaluating the crack pots from the people who might be onto something is to measure it against our history as a species.  All these people are busy saying that folks with histamine issues need to avoid fermented foods.

But ancient people rejected foods that tended to kill people very often.  So why is it that almost every culture on the planet has developed fermentation of some sort and considered it a staple food, long before organized agriculture and our modern food system? 

Ancient peoples didn't tend to keep eating things that killed people.  And anaphylaxis is a pretty immediate and obviously attributable way to die, even if you don't understand it scientifically.

So how come they didn't reject fermented foods, if people were dying of them?  I think the answer is that people weren't dying from them.  Do they have histamine?  Yes, probably.  But we put ourselves in peril when we oversimplify too far.  And saying that simply because a food has histamine, it should be avoided, is a pretty big simplification.

There are people whose systems are so extremely out of whack, that they probably do need to avoid a lot of that list while they try to address the vitamin and mineral chaos carnival going on in their body, because they are too hyper-raective to everything, from being so extremely out of balance.

But there are a lot of good things in some of those histamine foods, and in many cases, some of the elements that help people process histamines, like the magnesium our system needs for nearly everything, the vitamin C in a lot of fruits, and so on.

So, what about fermented foods?  We know that it breaks down anti-nutrients, which should be a good thing for a lot of foods.  We know that it is good for gut flora.  Lots of good stuff.  And just this week, it's been announced that they've found a kind of gut flora that eats GABA. 

https://www.newscientist.com/article/2095769-gut-bacteria-spotted-eating-brain-chemicals-for-the-first-time/

So what if this is just the beginning of understanding the dance in our gut flora, all the things they eat and produce for each other.  What if your histamine problem is really a lack of these little critters that are supposed to be eating well from your whole foods diet and from the chemistry created by the other organisms eating from your whole foods diet?

A concept that we talk a lot about in Permaculture growing is the idea that when your garden is eaten up by grasshoppers, you do not have an excess of grasshoppers, like our overly reductive reasoning tends to suggest.  You instead have a deficiency of birds and lizards that create a balanced ecosystem.  
Apply that idea to your gut flora.  You need to figure out what your systemic equivalent of chickens and lizards is, and provide that to the community to repair the imbalance you're living with.

I have had this point driven home especially this week, because I have just been able to start eating fermented foods again after a gi test that required me to stay away from them for a few weeks.

Everyone and their uncle has told me not to eat fermented foods if I have histamine issues.  But it just didn't jive with history and sense to me.  So I ignored them, and a few years back, started making my own ferments, while staying on antihistamines for a few months, out of an excess of caution, to help me figure out if this was something I could use safely.

So, in order to figure out the details of whatever is still going on in my gut, having not perfected the whole mess yet, I went without something I had been using to keep the wheels on the bus and my pain issues in check for a few years now.  It really sucked for the duration to do without, and all sorts of other symptoms came back during that time. 

I don't have all the answers yet, but yesterday and today, I have been able to eat fermented foods again.  And it is clear that fermented foods are helping me with my deficiency of birds and lizards in some very important ways in this puzzle.  I am still suffering deficiency of some things I haven't found yet, but it is clear that fermented foods, despite their histamine are part of healing for me. 

I had an initial reaction of some esophagitis symptoms, upon restarting the fermented foods.  But it was not too significant, and suddenly, within half an hour, many of my other symptoms started to subside again, across various systems.  I suspect if it were somehow stabilizing mast cells, it wouldn't have happened so fast.  I suspect that some of those critters are somehow able to use the leaking histamine in my system to do something more productive, and it is modulating my immune system in the process. 

Given that studies have proven at this point, that GABA is part of the histamine regulation process in rats, it makes perfect sense to me that some of our gut flora are there to create, manage and destroy GABA, as well as many other things.  I can't go back in history and undo all the damage from stress and antibiotics, and whatever else.  But I can do things to restock the system.

In my personal process through this, at first I couldn't tell if it was helping me, a few years back.  All I could detect was some immediate symptom increase.  It took a long time, and dialing the chaos down in a lot of ways, detoxing a lot of the mess with a really healthy autoimmune paleo diet, some supplement support in a few places and a lot of emotional healing over the years to get to this place.  I imagine I am not alone, and a lot of people have walked away from fermented foods upon some initial reaction, but perhaps prematurely. Today, I don't need antihistamines.  I haven't taken one in months.  And the fermented foods are helping to modulate my system. 

I have also been reading a book about Alzheimer's and other forms of dementia, due to a family member living through that hell.  And one of the things it points out is that the benzodiazepine drugs (Valium, Ambien, Xanax, etc) have a dramatic impact on GABA.  The one time I tried Valium, it was a miserable experience.  And my surgeon for my upcoming knee surgery wanted to give me Ambien.  I was already looking into it with much trepidation, when I read in the Alzheimer's book that people who have EVER used one of this class of medication are 50% more likely to develop dementia.

Okay, now circle back to gut flora.  So what if all of our systemic drug hacking is basically feeding all the wrong things, and causing complete systemic chaos?  What if that is at the core of most of our chronic disease? 

By using single target meds, we're destabilizing a complex web of interconnections, starving some flora, feeding others, and creating chaos, much like we do in the garden, when we try to poison the grasshoppers out of existence. 

So what is the answer?  For me, it has been as much of a chemical and food related return to our evolutionary path as possible.  I am not completely rejecting the modern world.  I am still going to go through with the knee surgery, but I am certainly not taking Ambien as part of the experience.  And I think those of you fighting mast cell issues, should understand that your gut flora being diverse and healthy is what helps you modulate your GABA, and therefore histamines and neurotransmitters, and much of your glandular function, too.

It's a start that all of us with autoimmune have started looking at what foods we need to eliminate (damaged, corporate foods), but we need to avoid losing focus on the foods we need to add when that is possible, too.  If it is something that existed in your evolutionary path longer than agriculture, there is probably a reason, and something it is doing for you. 

It takes time for your T cells to forget all the reactive foods.  It takes time for your different types of T cells to re-balance.  There is a lot to this whole process.  But a consistent pattern is that it's hard to heal on too few resources, or when drugs are artificially pegging particular substances in our system.  There are times when it makes sense, times when it is the only option.  But I have learned to look with skepticism at the medicinal tools offered to us, and to hesitate before removing things that we've used for millennia, when I can find no evidence about how or why those things would have changed. 

We hadn't eaten wheat for long as a culture, and screwed it up a lot in recent history with GMOs and breeding for all the wrong things, failing to ferment it, etc.  So eliminating that one makes perfect sense.  But I can ferment something that is a wild food, the way people for millennia have fermented them, and nothing will have changed about that food, from the way my ancestors ate it, so it seems wiser to me to look at what has changed in me, and how to find the balance needed to manage that change, and add back in the thing my ancestors relied on, that hasn't changed, along with all the omega-3 foods, vitamin C foods, and other tools I am using to manage my histamine reactions and improve the process. 

Please understand that you should be very careful hacking your system, and talk to your doctor before making big changes.  But my hope is that at least you will think more about the patterns and the history in making choices going forward.  If you need to, fire your doctor and find one who will listen and talk through ideas.  But always keep thinking about the trade offs and patterns, and whether this is a deviation from all of the patterns that made us well for millennia.  

Crazy as Usual

One of the biggest struggles with autoimmune disease for me has been dealing with my stress patterns.

Once upon a time, a long time ago, I was this adorable little red headed child with ADHD.  Well, when you grow up with ADHD problems, you tend to take one of only a couple paths.  Some of us simply tuned out.  All the negative feedback all the time, and all the people telling us we could do it if we just tried harder, were just too much.  So we gave up on a system that was fundamentally unfair, refusing to see how hard we were working.

Or, we figured out how to steal all the power in the room, and became the class clown and problem.  Maybe a lot of the attention was negative, but at least we were reclaiming our autonomy from all the negative feedback telling us that if we would just submit a little harder every day, we'd be successful.  That seems like motivation to a lot of adults.  But somewhere along the way, we learn that no matter how hard we work, they keep moving that line.  So some of us figured out that the best option was to take power back for ourselves, amuse our friends, and do whatever it took to feel victorious, having admitted to ourselves that no victory was possible within the bounds of adult demands.

Or we learned to become human pressure cookers.  We knew nothing of adrenal fatigue, and kids were rarely prescribed any psychoactive substances at that point for anxiety or depression.  And so some of us, being just gifted enough in other ways, really did try to rise to the occasion, no matter the cost we were incurring on ourselves.

The reality is that most of us with ADHD probably did some of all three at times.  But for me, my average day was pressure cooker fear mode, no matter the cost.  I would panic at all the expectations, and drive myself half insane trying to make the details come together.  There were other factors in my life that made this worse.  That list could go on a long time, but I will just mention that "sweet old lady" who was my third grade teacher.  She was to retire after that year, and her idea of teaching at that point in her path of personal exhaustion, was to make everything a competition while she did as little as possible.  For those of us with stage fright and panic attacks and a struggle to function verbally, rather than visually, this was a very special hell.  Standing in front of the class losing contest after contest in multiplication could not have been more demotivating, if you'd paid a scientist to develop a maximum demotivation tool.

So I struggled sometimes, often failed in scenarios like that one, but still kept trying.  I went through eye therapy when I was about 11, and the doctor said to my mother that she'd never seen a kid with so many issues work so hard for success.  That was to be sort of the overview of most of my childhood.  There is little that I can't do, but the cost is sometimes astronomical, and in no way correlated with other people's perception of how easy or hard that task "should" be.

So I can't really say that it came as a surprise, many years later, when I began seriously reading about autoimmune disease and found that a primary component for a lot of people is unresolved history of anxiety and emotional problems.

But when you've spent your whole life pushing yourself toward too many projects, too many things on that ever-expanding to do list, without retreat, it's hard to figure out how to get off that train.  The ADHD makes it worse, I think, because I never knew anything else but trying too hard for too little to show for it in an average day.

How do I manage the mess, now that I do know it's killing me?

I still can't say that I am good at it.

But I have learned a few things over the years to manage the stress better, and reduce its impact on my immune system.

I manage to make lists.  But these days I have the never ending list where I keep whatever I just need out of my head so I stop obsessing, and then I have my "5 things today" list.  This helps to encourage me to learn to break tasks down more thoroughly into sets I can do in a day, allows me to ignore the overwhelming list of 300 things, while focusing on the very small number that I have chosen for today.

I have also taken up coloring books again.  I was slow to sign on to this recent craze.  But it seems to help me get out of my head, so experiments there are positive.

I focus on eating well, and recently have been trying to improve my extraordinarily broken sleep patterns, with some success.

I garden, which despite the exertion, is somewhat meditation for me, really.  It's exhausting, yes, but peaceful, and makes me feel less powerless on frustrating days.

I did a lot of years of therapy, working on myself, and always know that's an option if I need a tune up, again.

I cuddle.  It's funny.  We don't tend to talk about it a lot as a culture, but I think sometimes our obsession with ways to de-stress are partly related to a break down in physical contact.  Someone willing to just pet my back for a long time is an amazingly soothing thing.

I make myself teas and linger with them.

There are other things, but those are a beginning.  I do know I need those things, and to limit my overwhelm levels.

And yet, somehow, it hides, waiting to pounce at the least provocation.

I recently found myself a new doctor who takes me seriously and isn't basically incompetent about all the things wrong with me, like most of the doctors I have worked with.  On the surface, that's a relief.  But it also brings its level of chaos.  Thanks to GI and adrenal testing, I have spent the last few weeks on and off supplements that I tend to use to help keep the wheels on the bus about various things.  That has caused some of the pain problems to come roaring back.

The cause is worth it, to finally diagnose some of this mess more accurately, but it's rather like having the magician botch the tablecloth yank, and ending up with your plans for the week in a pile of so many pretty delicate china shards on the floor.

And then on top of the pain wagon of holy-hell-why-me?, I also learned that doctors have been ignoring me about my knee for years now, and it turns out that once again, I was right.  There is something wrong.  You would think that by the 35th rodeo, a girl would know what to expect and assume most docs are not competent with your problems, but apparently I am just entirely too optimistic.  So new doc and an MRI later, it becomes clear that I have a badly torn meniscus in my left knee, that I have been walking around on for years.

So on top of life in the molasses swamp of pain, I am trying to schedule surgery, work around a trip out of town, and manage to make enough food, that I have sane things to eat while I can't stand around in the kitchen for hours like normal, making food.

And that would be more than enough, but wait, there's more!  For one low payment of more time than I possibly have, I also must finish the mural I started in the bedroom.

When the ex left, they left a mess behind them, and we've been slow dealing with it, replacing flooring and whatever else needed to happen.  We finally have the flooring done in the master bedroom, the baseboards in, and all that, but a paint guy drove me out of my mind, by not quite matching the color, and mismatching the sheen of the paint we took in to him.  We were trying to clean up the 200 holes left in the walls, but instead we drove me bananas.  So if I wanted to not end up rocking in a corner drooling on myself in frustration, I had to do something about the paint.

Probably that sounds crazy.  But have I mentioned I am an artist?  (See, I included art to prove it.  ---->)  Paint mismatch literally makes me fixate for hours, no matter the lighting conditions on the slight subtle differences, which is hardly conducive to sleep or sanity.  So I decided, back before finding a new doctor and all this chaos, that I would start a mural, allowing me to make it seem like changes in color and texture were on purpose, and reducing my overwhelming perfectionism about the paint situation.  When I started that project, I had no plans for all the chaos that would pile on shortly.

With knee surgery on the horizon, I need to stop doing it at a leisurely pace, and get that sucker finished so we can move the bed in, so that I won't have a need to do stairs every day while I recover.

And then, because I am what is known in the medical world, as a giant pain in the butt, we've had to squeeze in extra doctor visits to figure out meds I can actually take without reactions, compounding pharmacies, and all that sort of jazz, too.

Sometimes, no matter what we try to get the ducks in a row, and manage the stress, the ducks have their own opinion, and goose you for your effort, cackling as they run every which way.

And this is how you find yourself frantically painting spots and swirls on your walls, in between cooking frenzy, while ignoring your blog you just started, for days, because somehow knowing how to manage stress, and actually applying it to your life any given week, don't seem to exist in compatible universes.

But with any luck, I will have pictures soon, of the crazy things I am doing to my walls.  I decided as an act of taking back my own enjoyment of life that it was time to stop waiting to be grown up enough to paint any thing I pleased on my walls.  So I have gone half wild.  We shall see how it all comes out.  Always hard to say in advance.  But it is a wacky, manic kind of fun, if also exhausting.

But I think I might owe my adrenals an apology letter after this project.  At least I will be able to lay around a few weeks being amused at my work, though.  So there is that to look forward to.

Now if only I could develop the psychic ability to better predict the future, next time... 

For the Family of People with Autoimmune Diseases

For the family and friends of people with autoimmune diseases,

Someone -- most likely a woman in your life -- has been diagnosed with autoimmune disease. What does that mean for you?

It can mean many different things, depending on the details. But I want to talk about some overall patterns and expectations here.  Please remember that her details may vary somewhat.

The people who get autoimmune diseases are primarily women. But the pattern doesn't stop there. We tend to be women who try very hard to take care of the people around us, try hard not to need things from the people around us, and meet all of everyone's expectations, and we have a very strong drive to get things done or accomplished in life. There is a reason we are the most likely to be impacted. Stress of any kind, whether physical or emotional, nutritional, chemical, or from any other source, tends to be a very large factor in the development of autoimmune disease, as well as the episodes of it flaring out of control.

It is likely that those of us with autoimmune diseases have genetics that make it more likely we will suffer such chronic ailments. And many of these disorders are made more likely based on the way that a woman's body responds to female hormones. So even though many men carry the genetics for autoimmune disease, many fewer of them have it manifest.  Men's system is under less load in some ways, and their stress responses are somewhat different. The chemistry to make it possible to have babies, also means that we have less margin for error about sloppy stress in our lives.

For most of us with these problems, we don't know it is happening, at first. We just feel more exhausted than usual, and keep pushing forward, trying to get everything done. Eventually, that bill catches up with us and comes due. Something starts to fail. Sometimes that is an organ, like the thyroid.  Sometimes that is some kind of nervous system or blood vessel failure like fibromyalgia, or MS. But in all cases, we eventually can't keep ignoring the collector, no matter how much we want to meet everyone's expectations, and take care of the people we love, and get all the things done that need doing.

As someone who is close to a person with autoimmune issues, you should understand a few things about us emotionally. It is often devastating and crushing to be told by our doctors that we have to stop doing all the things we love and are used to doing. These disorders will keep escalating unless we can find the ways to reduce every kind of stress on our systems, which eventually will leave us unable to leave the house, bound to wheel chairs, suffering organ failures, or dementia, and unable to do anything at all, with very short lives, in many cases. So our doctors tell us we HAVE TO STOP doing all the things.  And the good doctors start teaching us how to manage our daily lives the only way we can.

That means we have absolutely no more room to try harder to make it all come together. We have to let go of many of the things we believe are important, and some of those things will impact your lives as well. And even when they don't directly impact you, we really need your understanding what we are living with every day.  And we need your respect, love and care.

We are women who are very bad at asking for help.  We are women who will always try to sacrifice ourselves to make other people happy, even after we understand we are genuinely sacrificing our lives, our wellness and our future. It is so very difficult to need help, for most of us, that we often fail to follow our doctor's advice, more often than not, still doing much more than we should, and trying to be flexible when we shouldn't. So it becomes partially your job to think about our patterns and watch for signs, as well as doing those things you reasonably can to help us protect ourselves, rather than always waiting for us to ask. It sucks that we need that, and we hate that we need that, but it really is important to our health and safety.

You got used to a way of being with this person in your life, where she was doing way too much, so you didn't have to think about it, never had to volunteer, could beg off a lot, never had to really think about a lot of things she needs, or would otherwise do. But that was part of the broken pattern that helped her get sick, so now it is everyone's responsibility to learn to better pay attention to some of those things, and not wait for her to ask for help, and not make as many assumptions in your daily lives.  Those days of the free ride are over, and she is paying the price for them.

Why do things have to change? She won't dwell on this. She will want to have as good a day as she can, and share as many smiles as she can, because every smile is her lifeline, her little way of getting through one more day of pain. But her disorder is invisible and vengeful. What she isn't telling you is things like the following:

• Her bones and muscles ache in a way that makes her want to cry all the time, but she's exhausted with the tears, and they just don't make it better.

• Her joints and muscles are under constant attack by her own body, and everything that she does, even things as easy as taking a shower, feel like the hardest hike you've ever been on, or that day that the gym teacher pushed you so hard you could barely move the next day from soreness. That is her new normal.

• Her skin, eyes, sense of smell and sense of taste can be impacted to the extreme. Sometimes even being outside will make her blister badly, even if she hasn't been there long enough to get a sunburn. She may get sick from heat or cold changes, even though she would like to run the AC, too. She needs you to assume she needs to be asked before you change cooling and heating conditions. It will make her eyes hurt, make it hard to focus on what is happening when the sun is bright, or headlights hit her eyes. Things that just smell nice to you, will given her a headache worse than any you have ever experienced. She won't be able to control these sense inputs, and may sometimes throw up, or have to flee, or suffer in pain for days, or even pass out or go into anaphylactic shock from these normal exposures like scented shampoos, and perfumes and candles, and other products. She needs you to understand that she's not being difficult.  She could die from these exposures.  The more she is exposed, the worse it may get and more dangerous they may be. The scented product aisle at the grocery store can be debilitating, and may mean she needs help shopping, just because of the chemical assault on her system. Her skin may dry out, her mouth may get very dry, she may have painfully dry eyes, or hurt because you tried to give her a hug, even though she desperately wants to hug or cuddle you. She may even get horrible breath. She may have days where various kinds of touch are just too much emotionally or physically, even if she wishes she could take them.  She needs you to remember that it isn't personal.

• She will be exhausted sometimes. She won't know when it is coming. But she will go from ready to take on the world, to suddenly feeling like she had nothing but gym class for the last 20 hours, and she can't move, with no warning, and no outward sign. She will want to do one more thing, or run that one more errand, or fill her promise to help you with something, but she just won't have the ability. It's not anyone's fault. She wants to be able. But sometimes even taking a shower will be so exhausting she needs a nap afterwards.

• She needs to know that you are actively willing and trying to help her, and that it's okay for her to ask for your help. She hates asking, a lot. So she's doing everything she can to ask for as little as possible. But if she sees that you intentionally offer your time, sees that you try to lighten her load without always being asked, and if she sees that you do help out when that's reasonably possible, if she does ask, that will help her a great deal. It's okay to negotiate ways you can help her best, or ways she can ask for help most usefully from you. And it's okay to sometimes need to say no. She will try to understand as long as you are usually offering to help and willing.

• Her organs will be under attack in many cases. Sometimes there won't be anything at all anyone can do, except understand that she will have weird and sudden problems related to how much her organs are suffering. She may need a hospital to deal with what was only a cold for you. She may have to stay close to a toilet, or have sudden surgeries.

• In almost every case, she will have to completely change what she is eating. This is one of the hardest things the doctor will ask her to do. For most people, food is tied up in happy memories, and celebrations, comfort, and adventure. And eating out has become our break from a very stressful life.  The disease will probably take that from her and leave her with all the work, and none of the community joy.  She will feel very left out, very isolated, and will most likely be very hurt watching other people eat all the things she can't have anymore, that have all those memories and feelings attached. And the doctor will most likely make her eat mostly the foods she hates, which takes away her feeling like she's in charge of her life even in any of those small ways, while the disease has already left her helpless in so many others. It will be especially important that you understand that her food limits really make her hate life, and want to hide, sometimes, especially if she can't escape watching other people have all the things she can never have again. It's important for you to understand that even if you can still eat those foods she can't have, it may be mean to do it while she's watching, or where she finds the evidence. Your life will have many years of opportunities to enjoy those foods she can't eat. Do what you can to protect her from unnecessary reminders that she's missing out.  And be her champion and protector when family push back on her food limitation, or make thoughtless decisions to try to prove she doesn't have to eat the way she does.  Those choices are cruelty, and there are people being prosecuted for feeding people with autoimmune disorders foods that are poison, even now.  Help protect her as much as you can, even if you find it hard to believe or understand. 

• She will most likely have mental and emotional side effects beyond those related to food, too. The chemical changes in her system make her prone to depression, forgetfulness, sometimes memory loss, difficulty concentrating, and sometimes difficulty controlling her own mood when she's frustrated. She needs you to write things down for her, or remind her, without getting upset that you need to. She would remember if she could.  And she needs you to understand that sometimes it is the disease snapping at you, not your spouse.  Meet it with kindness when you can.

• The medications she may have to take, may have their own host of side effects, like weight gain or weight loss, or other kinds of illness. Please treat her struggle like it is probably much more complicated than anything she's ever faced, and assume she's doing everything she can to manage those effects, even if it looks like she's failing.  Defend her to other people who are critical of her weight or appearance, or other struggles. 

• She may have to use walking aides, or even avoid going to a lot of things she wants to enjoy with you. She may even have to be in a scooter or wheel chair, eventually. This will be very embarrassing and frustrating for her, most likely, and she will resist help as long as she can. But that sometimes means she will push herself too far, and you may need to look for ways to be that extra bit of physical support she needs in some way, whether it is running to get her help, or offering her a hand, or getting her cane, walking stick, or walker for her. But when she needs help will often be very hard to predict, much like her tiredness. She will think she is feeling good today, but the pain will sneak up on her, and the chemistry of pain will exhaust itself in her brain, and her body may literally stop working, sometimes without much warning.

• She will have a hard time finding the balance between needing what feels like far too much help with far too many things, and still wanting to take care of you, and do things with you and for you. She probably won't know how to say this, but even though so many things won't be possible, she still wants you to treat her like she can do all the fun things she used to, in terms of invites and requests. She will need to say "no" more than she used to, but the fact that you still think of her, and still consider her able enough to ask, will often mean a lot to her and her own ability to feel valuable. So if you don't mind hearing "no" sometimes, keep asking, and try not to be too disappointed with no(s). It's okay to check in and ask if you should keep asking, if it's been a while since you got a yes, too.

• She will have this struggle, at random, for the rest of her life. Sometimes, if she's lucky, she will get some long periods where things are going well, and she seems back to her old self. But the slightest virus or high stress day, or food poisoning, or toxic exposure, even if it's invisible to you, may set her body back into collapse for a long time. She will fight this fight her whole life, and may even be hospitalized suddenly. Please take her statements that she needs something urgently with complete seriousness, even if she seemed fine a moment ago.

• She is grieving the loss of who she was and all her dreams. It may help you to think of her like you would someone whose mom or dad just died, sometimes. You can't see their pain, but you know they are struggling with drowning in their feelings. Just also remember that for her, this isn't a single pain event like a death. Every week she may discover some part of herself she has lost. She will sometimes struggle to focus on the good things in that tsunami of frustration and heart break. But please understand that for her, she is losing someone she loves, all the time. Do what you can to make her smile when that is possible, and hold her hand or listen, when it isn't. But make sure you also take time to take care of you.

• She is already trying too hard. Even though it looks like all she did was nap all day long, her body is genuinely exhausted, and she needs you to respect that she hates being unable as much as you hate that she can't do those things for you anymore. Help her find ways to accept that she has limits now, even though you really want to complain that she isn't doing enough, or you feel like you're doing all the work. It's okay to tell her that you struggle with feeling like you're doing so much of the work, even though you know she would do more if she could. But say it from a place of kindness and understanding that she can't change this any more than you can.

• She is already measuring herself against all the work other people are doing, and feeling guilty inside that she can't help more. Please share that you are sore from working in the garage, but please do it without commenting on what she couldn't do to help. She wants to bond with you, sympathize with your pain, and commiserate, but she doesn't have room for more guilt that she can't take that load for you.

• She has trouble making plans anymore. She doesn't want to lose friends, or have to cancel all the time, or be late, but because she can't predict how she is feeling, moment to moment, she doesn't have many good choices. So outings are hard to plan, and vacations are especially difficult, because it is so hard to say if she will feel okay, and takes so much extra planning for her to stay well enough to participate. It is especially important during these times that you be forgiving and very considerate of her needs, and do anything you can to lower her stress and see that she eats the way she needs to eat.  She will sometimes get tired and frustrated, and try to tell you it's okay to do whatever is fast, instead of what is important, in places where she doesn't have access to the things that would help at home.  Don't believe her.  Find a way to see that her real needs are met when you can. 

• She will already be her own worst critic. In her head, she will most likely be struggling to avoid chewing herself out regularly.   Nothing you can say will possibly be as harsh as she is on herself.  So she needs you to be especially careful of the things you say to her, and how you say them.  It's okay to have your own feelings, and to express feelings, but you always have a choice in how you say something. There is a big difference between grumpily demanding “why do I have to stop eating wheat (candy or whatever else), just because you're sick all the time!?” and saying “I wish there was a way to make you better, so we wouldn't both have to skip candy and soda.” The first statement becomes an attack on a person who can't help that she has this problem. The second statement is a way to express your frustration in a way that shows you care about her, and know that she misses those things too. It is even okay to be mad at her disease, but it's not okay to take that mad out on her. Tell her that you are mad at her disease, too, if you want. But don't yell at her for it. She can't help it.

• Sometimes, when things are really bad, it may seem like she does a lot of whining or complaining, or constantly talks about her doctors, diet or illness. It's okay to ask her for a topic time out, or tell her you're feeling a little overwhelmed with the subject right now, and negotiate a time frame for a break, or ask whether what she needs to say is really important right now, or if it could be postponed. But please remember that any amount you're hearing about, is only a tiny portion of what she's dealing with every day, and she really wants to feel like you care. It means a lot to her to feel like you want to really understand her needs and struggle, and how to take care of her when she can't speak for herself. So whatever you say, say it with kindness, rather than accusations or criticism. And make sure that you understand that she may face emergency situations where you have to be able to tell her doctors what foods and medicines will make her sick, because she can't do so herself. She isn't telling you just for sympathy. She really does need you to be able to act in an emergency to protect her life and ability to heal.

• She hears from all sorts of sources in her life that all she really needs to do is (insert suggestion here). She will hear this from many directions, all day, and even some that should be trustworthy sources, won't be. She is struggling all the time to manage all the people with advice, and probably gets very tired of telling people that their quick fix won't help, and why. So sometimes, as her family, it's a good idea to ask if she's up to hearing about the suggestion a friend or co-worker made. And sometimes just listening to her means the world to her, instead of offering her advice at all.  When you can, thank someone for the suggestion, for her, but be firm that she and her doctor are handling those kinds of details.  One less time she has to tell people to stop really helps her out. 

• Her ability to exercise like normal people is probably broken. This will really frustrate her. This is especially true if being overweight is an aspect of her immune problems, and the whole world is telling her to eat less and exercise more. Because her system is attacking itself, exercise that would make you feel better, and more healthy, will often send her into a miserable flare, and to bed for days. Her system is constantly fighting a war against itself, and so, much like any war that goes on too long, it's hard to keep resources flowing to all the troops. So her body is doing incredible work just to function. If she tries to add aerobics, there is a very good chance the mild swelling and damage that comes from any normal work out, that you would heal in hours or days, will take her days or weeks, and cause swelling all over her body.  If she restricts calories on top of the problems she is fighting, she can be starving to death in terms of resources her system needs, even while she's fat on the outside.  The lack of nutrients from calorie counting can even lead to organ failure.  It just isn't an option.

• She will hate the need to point this out, but the consequences of not doing all these things to take care of herself is that she is at increasingly higher risk of severe immune reactions, anaphylaxis, other more severe autoimmune disorders developing, that will leave her even more handicapped, and even increase risk of death from all causes. This isn't optional for her. She isn't ever trying to be a pain, or demanding any more from you than she has already had to demand of herself. She may not even be right about all of it, but she's operating on the very best and most current information she can find, so respect that effort in how you choose to respond. Be aware that for everything she's asking you to do or not do, it's probably half what her doctor wants you to help with or avoid. You need to recognize that, and treat it like the understatement it is, rather than handling her like she's a crazy health nut with unreasonable expectations. It's okay to mourn the loss of those things in your life, if you need to. It's okay to say you resent the genetics that make all of this our problems to face together. But remember that she hasn't gotten to choose, and needs your kindness in how you pick your words.

• And perhaps most importantly, her immune system doesn't work properly anymore. It has lost its ability to tell the difference between her own cells and those cells that attack the body, like viruses and bad bacteria. Because of this, it is especially important that she be extra careful about keeping her system as healthy as she possibly can, because the way her body works, the more it has to react to, the more it tends to attack other things accidentally. So what would just be a cold for you, causes organ damage for her, that may shorten her life, or similarly severe problems. So it's especially important that you help her live a long life by avoiding situations where you spend extra time around sick people. It is critical that you are careful about washing your hands, and always cover your mouth when you cough or sneeze. She will feel guilty telling you, but she NEEDS you to eat healthy, so that you won't bring home viruses that just give you sniffles for a few days, but instead get her sick in a way that causes permanent damage, or leaves her hurting and unable to recover completely for a month or longer. Your days of junk food, and ignoring whether your friends are sick, and forgetting to wash your hands after sneezes need to end, because all of those mistakes can actually shorten her life the more they add up, and add stress and damage to her body. She needs you to protect her from those things that add stress and activate her immune system as much as you possibly can. It's not just a matter of bad manners or personal choices anymore. A cold isn't just a cold. You are protecting someone's life besides your own, and hers is much more fragile than it appears.  And there is no pain like the feeling that your choices led to the pneumonia that killed someone you love.

So, as you can see, life gets complicated dealing with autoimmune issues. She wants to be honest with you, but she's also trying not to overwhelm. Sometimes she won't guess right on what she says or shares, or how she shares it. But, unfortunately, autoimmune disease isn't just her cross to bear. She will try to protect you from the parts she can, but the choices you make every day matter. You are making choices about her life, even when you've never had to think that way before in terms of what chores you help with or things that used to seem like personal decisions with low risk. It matters that you offer to help, even when you don't have to or want to. It matters what choices you make to protect her wellness. It matters that you think of her autoimmune disease as everyone's responsibility to manage and everyone's illness to bear. 

When you've taken responsibility for your part of this set of problems, and make it “our journey” instead of “her journey” you will get to enjoy the best of her for as long as she has it to give. It can be lonely to be sick. Do what you can to connect in whatever ways are available, and to share this journey between you. That kind of loving support does more to heal both of you, than any other choice you can make.  Be her cheerleader, because she is already her own critic.  That position is filled.  But cheerleader can help balance those voices.

Thank you for loving someone even when it isn't easy. We appreciate it more than you can know.

Welcome to the Chaos!

People keep telling me I should consider starting a blog to talk about this crazy journey of my life with ADHD and autoimmune issues.  So I finally decided to see what all this blog stuff is about from the other side.

Please bear with me, as I am still getting my sea legs.  And as those of you with your own autoimmune issues may know, life can be unpredictable at times when dealing with these health problems.  Some days I can slay dragons, but some days just making it through making dinner can be a real challenge.  So we shall see how this all works out.

If, over time, there are things you would like to see my talk about, please feel free to speak up.

As for me?  Well, I am an anomaly on so many fronts.   

I am part of a poly family.  All five of us in the house have been diagnosed with ADHD.  Three adults and two kids with ADHD can be an interesting roller coaster sometimes.  But I am lucky in that I have the love of two awesome men, and as teens go, these two are both usually pretty good kids, both brilliant and creative in their own unique ways. 

I also have various chronic illnesses and autoimmune issues.  The diagnosed set include fibromyalgia, celiac disease and chronic fatigue.  But I have a suspicion there may be other things going on.  At some point it's easy to get to the point with doctors where it stops mattering exactly what the diagnosis is, and just start focusing on what you can be doing to heal.  I have gotten to that place where I read about all sorts of other disorders of the immune system, because often there are clues hidden in disparate places, and it's done more to unearth my actual problems than any session with a doctor ever has.  I am working with a new one now, which will probably mean an update to those lists here shortly, but I will wait for her perception before laying them out here. 

I like to cook, do lots of arts and crafts, raise as much of my own food using permaculture, as I can on our little suburban lot, because that food doesn't make me sick, and otherwise take on too many projects.  Welcome to my chaos!