latex, latex all around

Yesterday.

Assessed out of PT 3 days early because progress on referral area has been so fantastic.

Unfortunate accidental latex exposure while I was there. (Stretchy band stuff, touched by someone who'd had their hands all over them.) Thank goodness for the extra benadryl and emergency pred stash I carry around in my epi-purse, because...

First time I was ever turned away during allergic response from an open clinic that had an urgent care sign because they purportedly had no provider in the building and didn't even offer triage. Wound up driving 20 miles over to another urgent care. Hey, this is how we roll in the Ozarks. By the way, first hour self treating (thank goodness for experience) is kinda tense in stupid traffic.

Traffic ironies galore- the one day I need speed and smooth sailing is the day I can't turn left against a funeral with 40 cars going by, the day I get caught behind two tar trucks bottlenecking a major highway, the day I wind up behind a very loaded tree trimmer navigating a busy intersection during a lunch rush, and then wind up behind the most careful older person in a big luxury car ever slowing down to 20 mph on a street there's no way I can pass on. If airway had blown up, even 9-1-1 would've taken forever to get to me, sooooo glad I carry pred everywhere I go.

It all starts innocently enough, people don't think about something they touch transferring to everything else they touch and then handing things off to people, like printouts with notes all over them. Then all it takes is a little itch around my nose and mouth during one of the biggest histamine months of the year (ragweed and cottonwood) to rub latex dust on my face because I didn't wash my hands after PT (using alcohol doesn't 'kill' latex, it's not a germ), and the next couple of hours turn into lip and tongue puffing up, roof of my mouth puffing up, barely being able to swallow even just a drink of water much less the cheese stick I brought for lunch (choked solid on a cheese stick), and my chest feeling like it's super taped up and I can't get a breath in properly.

I'd already had zyrtec with my breakfast, but that barely even keeps ragweed reaction under control. I took benadryl before I went into PT because I always take benadryl going into buildings around other people, just in case. I took more benadryl over the first reaction hour once I noticed it happening, only so much benadryl you can take. Got the pred down and spent another ridiculous hour getting myself to medical assistance just in case.

So this week I'm on my second pred burst in 3 months over latex, hafta spend my week avoiding carbs and glucose testing all day long, is it any wonder I'm a hermit and hate leaving my house.

The following links click to more very useful information. Please visit these sites if you think you might have problems with latex.

Latex allergy advice- Australasian Society of Clinical Immunology and Allergy
"No treatments are yet available to cure natural rubber latex allergy. The best 'treatment' is to avoid exposure to latex. Medications are available to temporarily alleviate symptoms... You need to avoid all latex products. The biggest risk comes from contact with rubber gloves, not just in the medical or dental setting. Balloons, household gloves, gardening gloves, many adhesives and condoms can cause a severe reaction if you use them.

Please tell your doctor or dentist about your 'latex allergic status' when asked about 'drug allergy'. Remember to inform anyone else likely to perform a procedure on you (even your hairdresser!). Wear a 'medic alert' disc and carry a letter of explanation from your allergy specialist.
Have a first aid kit available. Epipen is a safe and easy form of self injectable adrenaline, but remember to keep a check on the expiry date."

Latex allergy- Mayo Clinic
Note- "Latex allergy also is related to certain foods, such as avocados, bananas, chestnuts, kiwis and passion fruits. These foods contain some of the same allergens found in latex. If you're allergic to latex, you have a greater chance of also being allergic to these foods."

Cross Reactive Food- American Latex Allergy Association
"Degree of Association or Prevalence

High (4)
Banana, Avocado, Chestnut, Kiwi

Moderate (7)
Apple, Carrot, Celery, Papaya, Potato, Tomato, Melons"

In the waiting room- whoever designed this carpeting is a genius. The fibers are woven so that it all just looks smudged, everything I thought could be a puke or blood stain turned out to be a trick of the eyes the way they haphazardly staggered the blue through everything, almost like the entire carpet was going through pixel fail. I was pretty fascinated with it.

controlled crash- holiday spoonie

It's been years since I've gotten through the Christmas season without being in some level of flare up. I usually get validation in the form of a speckled ANA and 80-90 SED in January or February and wind up on prednisone for a week to knock it back down. I've been doing this so long that I can feel about where I'm at day to day, and in order to avoid an ER trip at Christmas over a solid face plant from doing way too much, I have learned to readjust my days accordingly, slowing down more or letting go of something on the list, until I'm nearly down to a crawl, but still functioning.

I've spent a few Christmases completely nonfunctional and unable to even smile and get dressed without being a huge drag on everyone, so it was easier to hide in my house and cry and try to sleep through everything I was missing. I felt too ill to get into a car to go lay on someone else's couch, and I couldn't be nice on the phone if someone was handing me a million dollars. It's very hard to juggle all the extra social expectations on top of the extra demanding physical expectations the holidays bring. Yes, I've done it all- parent president of high school marching band, a variety of fundraisers, as much school support as I could handle while still working, and eventually had to bail on this and that until I was finally just missing everything. I followed all my doctors' instructions, including handfuls of pills, but nothing replaces rest, nutrition, and common sense. During holidays, all three of those fly right out the window.

Most of surviving holidays in flare up is about balance. People think they have to fulfill social obligations. I realized over time that other people would be shocked if they were asked to be supportive of social obligations if it meant risking their lives. Every time I go into flare up, I am risking my life when I do too much and start crashing. I have lived for years with flare ups, and they don't necessarily kill a person outright, but they do cause harm in the form of wear and tear on tissues, and a person must spend quality time rebuilding that shredded tissue if they want to live a good life. Inflammation from a flare up is hard on blood vessels, the lymph system, major organs (especially kidneys and eyes), and can affect the brain to the point of making terrible mistakes in traffic, and we all know how immediately life threatening that is.

Several big things happen in our bodies to keep our balance. Hormones regulate everything 24/7, special organs continually assess chemical and nutrient levels and send reports to the brain, and the constant feedback is how we stay in a good rhythm every day. We sleep, get up, eat, get busy, eat some more, enjoy something, and go back to sleep. When we get out of rhythm we don't feel well and get jet lagged and cranky. People who live with chronic illness of any kind get bumped out of rhythm very easily, the reports to the brain get a little frantic, the brain reacts with attempts to adjust this and adjust that, but when something isn't working very well to begin with, all kinds readjustment attempts can bump into each other, cascade into a mess, and then snowball out of control. Hormones and chemical levels on blood work look more like a first year programmer failing an exam than an experienced machine that evolved over millennia.

Someone with lupus and diabetes, like me, might feel really good one day. It's the holidays! This is fun! We go on an extra shopping trip, miss a meal, grab food on the fly, stay up late with friends, don't sleep well, feel gross and eat all wrong the next day, push ourselves to keep up, shove extra coffee into our systems, take extra pain pills, and before you know it, a couple of weeks of mistakes have crescendoed into the nasty realization that we are way off course and the only way to fix what's happening in our bodies is to stop everything right now and get back on track, or even get emergency medical intervention. Being exposed to flu or strep on top of all this can result in hospitalization for some spoonies. What a dismal way to spend Christmas.

I have learned to do a 'controlled burn' and a 'controlled crash'.

A controlled burn is like knowing you're going to wreck your day, so you pack for contingencies. I take a lunch box with my own food when I go shopping. I limit myself to only so many hours of activity and then GO HOME. I've noticed 4 hours is about my max, and assume the rest of the day is screwed, I don't try to cook or clean after I get home. If I'm stuck in and out of a car longer than 6 hours, I know I'm going to crash hard so I pre-plan my medication safety net. The key to pills is knowing they do not fix anything and don't give me super powers. They are a bandaid meant to transport me more comfortably to the end of my day, they are not meant to 'cure' or make my problems nonexistent. I have dearly paid for abusing medication to keep stubbornly plowing through life, and I'm on full disability now. I would have been smarter to let go of a few things on my list.

A controlled crash is more of a long-term plan. My holiday stress starts in November and goes for at least 8 weeks through New Year's. After that I'm pretty much in crisis and need intervention. If there were no holidays, the changing weather alone would still impact my life, so I can't just blame holidays. But because there are holidays, I know I'm going to destroy myself, and I know it could get really expensive and depressing to clean all the mess up with doctors and then being stuck at home. So since I know this, I can control just how messy it gets. I can keep plowing stubbornly through, or I can map out a plan with contingencies and loop counters for smaller fails. I can let go of lots of little things and make executive decisions to control my blood sugar and my fatigue level, or I can cast my cares to the wind and spelunk straight into hellish misery and subsequent regret.

We hear people addressing depression and self harm in the form of cutting and whatnot, but we don't hear a lot about depression and freaking ourselves out with blood sugar spikes in the 300s when we reach for the comfort food other people take for granted. And then, if we have autoimmune responses, the inflammation that a glucose spike causes can trigger a flare up, and here it comes, the joint pain, the aching all over, the nasty headache, the difficulty moving around and sleeping and keeping up. And then comes the regret or self pity while our brain chemicals freak out and depression knocks us flat. And then comes over medicating or drinking, waking up with either way too high or way too low glucose levels but we're too depressed and late for work to check, and then comes a nasty morning traffic accident. I know of two morning traffic deaths in the last year directly related to blood sugar levels, both of which left orphaned kids behind. That was NOT a controlled crash. Yeah, now you see what I mean by controlled crash.

Everybody's got something at Christmas. Some people have cancer, some have funerals to go to, some are homeless, whatever. It's normal to go through depression at holidays and feel bad, but we must realize that sooner or later, everyone goes through a really bad Christmas. Or several. My mom was airlifted to a hospital on Christmas day one year. One of my children was in a hospital several hundred miles away on another Christmas having emergency surgery. Other Christmases I've been too ill to shop or wrap presents. So before we start our controlled crash and burn plans, the first thing we must embrace is that part of the PLAN is to plan on depression. Allow time outs for depression.

Normal up and down depression is nature's way of telling us we need to slow down because we're doing too much and then kicking ourselves for not keeping up. Stop that! Plan out a picnic for your depression. Make it a regular date thing. Don't shove it off and pop a pain pill when you've got time to waste a couple of hours. Let go of the world and crash on your couch. A lot of little crashes beats a nasty big one every single time. I have noticed over a couple of years that allowing for normal depression swings has a very positive impact on my more severe clinical depression. Depression, for me, is a lifestyle, so I include that in my self care plan. The key to this working is to let go of all guilt. Guilt is a control mechanism that people and society use to force behaviors. I would never dream of making someone feel guilty if they didn't play the Christmas game right, because I can imagine them crying later if I ran over their feelings and forced mine on them. We see it happen all the time. We also think Christmas day is THE DAY to be with family. What about the other 364 days? Doi. That kind of thinking isn't worth your health, capiche? We love each other every day all year long. Let go of that silly guilt. Enjoy a couple of hours of down time.

-*-*-Side note to caretakers- I know you don't get down time. I was DPA for years for my disabled mother, and my sister raised a terminal child. Find a way to do nice things for yourself. It's ok to ask other people to help you do a controlled crash and burn once in awhile.-*-*-

The next thing to embrace in a controlled crash and burn is forgiveness. If you think something has to be perfect, imagine falling and getting a concussion and not being able to finish making something perfect. Was it worth it? I'm here to tell you nothing brings reality home like a good set of stitches with lots of blood soaking everything. If you think something can't get done without you, imagine this is the year you shock all your friends being the youngest person they know having a heart attack. The world won't stop just because you do. Stuff gets done whether it's you doing it or not. Want to be around to see it get done? TAKE A BREAK. And eat something healthy with magnesium in it. Magnesium deficiency is one of the first things they check for when they do ER tests for possible heart attack. Ask me how I know this. Forgive yourself for not being superman or superwoman, forgive others for not reaching your expectations, and chillax. Just because you didn't die yesterday stressing out doesn't mean you won't have a stroke today over the very same thing. My mom had hundreds of TIAs before the big strokes started. She was right side deficit for years from stress and uncontrolled diabetes.

The next thing to embrace for controlled crash and burn is limits. Set reasonable time limits, glucose level limits, activity limits, and stick to them. I don't know about you guys, but I find it really embarrassing to wind up in an ER on holidays. I feel like I'm ruining other people's Christmas and stressing them out more and I really don't like the extra attention. That alone is usually motivation enough for me to stay on track well enough not to super crash. I've never been hospitalized, even with all my stuff, which seems to amaze a few people. I grew up very independent, raised by a father who still doesn't believe in doctors, and people who see me going to doctors all the time without knowing my history don't have a clue how difficult it is for me to get out of my house and keep trying to find ways to solve my problems with medical intervention. I feel like a guinea pig, I've hated all the tests I've had to go through, I loathe the fear (I usually have to be sedated for a simple MRI), BUT I am very very good at living with autoimmune flare ups and diabetes because I know how everything in my body works. I've known too many people who shrugged odd pain or feelings off and found out later they were in advanced stages of cancer or having severe diabetes complications or suddenly having heart attacks that nearly killed them.

One of the best inventions on the planet is a little tiny flip spiral. You can buy those in packs. Every day I flip to a clean page, put the date at the top, and then write the time when I do glucose or blood pressure checks and every pill I take. Make it a habit. It very quickly becomes second nature, and then you start noticing things. Maybe those two pills shouldn't be taken together. Maybe glucose readings are better at certain times of day. Maybe that headache or anxiety attack or cranky feeling you get starts showing up about the same time every day, and you notice it seems to be happening within so long of certain meals or activities. Or every single weekend. Once you notice a pattern, you can control the pattern. It's very liberating not feeling hostage to chaotic cosmic whim, life going out of control again, freaking out in the wee hours over something. It's very empowering to experiment with data and results over time.

Hence, a huge part of my controlled crash is data entry in a tiny flip spiral. I can tell you that I've missed taking my thyroid pill two days in a row only twice in so many years and both times I was extremely miserable. That alone snowballed several days into a ridiculous debacle, because thyroid has huge impacts on sex hormones, blood pressure, and diabetes. The headaches were out of this world, my heart thumped real hard, and the fatigue crash was pretty scary, not even going to mention menopause symptoms going off the rails. Yeah, two days was all it took for me. And I know this definitively because if a pill is missing in the spiral, I didn't take it. This has been a crucial strategy for me because I had significant brain fail for several years and my short term memory was a joke. I could have caused myself serious harm taking my pills wrong, and many people do. Medical mistakes are more common than you think. Not all prescription pill deaths are Hollywood actors overdosing. Click this if you think I'm being too dramatic. Prescription Drug Overdose in the United States Yeah, don't want that kind of crash and burn, either. You're seeing more and more why I'm calling my way a 'controlled' crash and burn.

I use my little spiral to help me set limits. If I can see cause and consequence patterns, I can control outcomes. If I can see that my fasting blood sugar is over 100, I know better than to eat sweets for breakfast, which starts the cascade for a really bad day with a nasty headache later and feeling sluggish through the afternoon, grabbing more junk and coffee, and then not being able to sleep, which in turn starts the next day off negatively before I even get started. If I have several rough days in a row going off track, I know it'll take a couple more days to get control back, and if I feel a flare up coming on, I know I need to rearrange my schedule for the week or wind up going out of control and calling my doctor. I can glance back through my little spirals and easily spot the days and weeks that went out of control.

I live on this edge in my body every single day, where things can go out of control real fast. I plan my life meticulously. That sounds like a drag, but it's actually pretty easy when I follow a few little guidelines I've made for myself. Take breaks, set limits, forgive myself, and pay attention to what I'm doing to myself. The easiest way I have found to control the cascade is to count my carbs in the first place, faithfully take my thyroid pill, and assume I'll need breaks even if I think I'm feeling fantastic. For the most part this has worked really well, but I still make some pretty big mistakes.

So a couple of days ago I made eggnog. I know I have to stop at 1/2 a cup and no more for at least an hour, preferably two hours. I wasn't feeling well because I had overdone, my brain fell out, and without even thinking I drank 2 cups of eggnog within an hour and popped my one pain pill for the day (doctor ordered anti inflammatory), then fell asleep on the couch. An hour later I woke up in crisis, disoriented, brutishly nasty headache, blood pressure spiking 187/112, weird things happening like one of my arms being ice cold with nasty spiky nerve pain shooting out my blanched white fingertips while the other arm was hot and my hand was bright red like I had been badly sunburned. My pulse was fine and my arms worked fine, so this was more like a nervous system reaction to something, but it clearly didn't seem to be any kind of allergic reaction. I finally thought to check my blood sugar and couldn't believe how high it still was fours hours after the eggnog (I usually go back into the 90s within 2 hours, so I must've gone really high),so I didn't eat the rest of the day. I'm guessing the glucose spike triggered an autoimmune reaction in my nervous system. This is not a new thing with me. Two days of severe headache and other nerve pain later, I'm kind of feeling ok again but dragging like I ran a marathon. All because I drank some eggnog two days ago.

The rest of my Christmas holiday absolutely must be revised now to a more tightly controlled crash. I feel like I'm in flare up now, my energy level is almost nonexistent, and it's up to me to get my team (family) in on not letting me hit the wall now before Christmas. No extra surprise favors from gramma on top of what I've already mapped out, no more exciting hustle and bustle, the plan now is to coast and stay on track with small meals and lots of rest. NO GUILT.

It's easy to forget all this when I'm feeling pretty good. It's easy for my family to forget all this when they see me feeling pretty good. But I've been kinda cranky lately, which is my typical warning sign that epic fail is ahead. I have to remove myself from the game board immediately. I did pretty good this year getting stuff done up to this point, and I'm going to focus on that and not moan about what I didn't get done. Getting 'done' with stuff before holidays isn't worth risking our lives. Capiche?

I've had years of practice. It never gets easier. It never stops being scary. But at least it's not hopeless any more. It's no longer a crazy scary scream ride that I'm clinging wild eyed through. It's more like a merry go round I can step off of and watch from the sides. I don't have to feel sad about it, because I've learned I can still enjoy it while I take a break. I don't have to be involved to enjoy the holiday. I can be glad I'm still here to see it happen.

That, my friends, is a controlled crash and burn. It is my Christmas gift to you if it's still a big crazy ride for you and you are alone screaming through the night on the internet looking for answers and feeling like your Christmas is spiraling in flames. Take a deep breath and put 'tiny flip spiral' on your shopping list. You're about to change your life.

If you're still in the mood to keep reading, I found this forum convo very helpful.

Is Having Blood Sugar in the 400's Dangerous?

This one is more techy.

Lupus and Diabetes
"People with lupus or diabetes – or both – can improve overall health and relieve a number of symptoms just by making healthy choices. A plant-based diet with lots of vegetables, legumes, and plant oils is critical. Adequate rest is also important. And exercise is crucial, both to control weight and insulin levels and to increase energy and improve mood. A healthy diet and a commitment to a treatment plan will strengthen the body and help the immune system return to a state of balance – and will make the treatment plan itself more effective."

One more thing- I can't repeat enough what a difference getting more protein in my diet has done for my overall physical and emotional health. Your tissues cannot heal properly without adequate protein and you will always feel 'off'. Pills can't fix that.

Get that spiral!!! Good luck.

that rug really tied the room together

Some mornings you feel like The Dude just looking for his rug.

All I wanna do is plug in 'coffee, 2 creams, 1/2 sugar' into LoseIt and right away I'm stymied by technology that won't allow for variation in a long list of generic specifics. I finally stumble onto a customize window but now I have to figure my own calories. The whole point to getting on this site is so I don't have to count the calories myself because I obviously have a hole in my head and can't count right.

I keep cycling through this existential 'why am I even on this page' crap, and I keep remembering it's because I thought I kept it at or under 1500 calories yesterday and somehow still put on a pound while I slept. Which could partly be due to the pred rebound OR, as my faulty memory strangely illuminated without any problem whatsoever at 2 a.m. in the dark, I forgot to write down the bowl of cereal that I ate and possibly even the cheese. Which would bump me over 1700 calories, and no wonder the scale went backward. Dang it.

The nutritionist I saw last month suggested LoseIt.com, so this morning bright and early I'm wrestling with the controls and feeling cranky. I have to do math. At 6 a.m. With a glitchy brain. Math used to be such a breeze for me. Bleah. But then I remember I really wanna lose the rest of this weight (I think I've remembered that 3 times already) and I get back to it.

Ok, so coffee the way I make it is 130 calories a cup. Since this chart says I can have only 1183 calories a day on the plan I chose (I'm a free plan person), I can tell already I'll be cutting out the second cup of coffee tomorrow.

I'd keep whining, but I'm recalling that I used to have a whole lot more to whine about, so I'm slapping myself and yelling GET A GRIP YOU BIG BABY and slamming myself against the wall. Maybe that's Walter. If you haven't seen the movie, spoiler alert, he's a big softie with PTSD. I like Walter.

See, prednisone really screws up the way your body metabolizes stuff, even after it's over and done. I've run into this in so many searches. I find a rare guy here or there that remains a stick without trying and says the rest of us are being silly, but it's a real thing, lotta fluid gets moved out and then more packs on, fat storage winds up going to all the wrong places (this is medically documented), and if you're diabetic and hypothyroid, oh well sux for you, just shudup and eat a cookie and buy a moomoo.

I've discovered that a person really can make it through steroids without any weight gain by strictly monitoring carbs while the pred is spiking blood glucose, but once the pred is over, your body will do everything in its power to keep that new artificial glucose default going, and the carb cravings get pretty bizarre even a couple of weeks after the prednisone is over. This is something you don't find medical professionals writing about because they stupidly don't know, most of them not having gone through long rounds of steroids or maybe not as intensely observant of themselves on it, like I am. My body got real used to my blood sugar being 180 through the day, even when I had no carbs at all, thanks to the prednisone, so now that I'm off, my brain/body feedback loop is screaming for restitution and trying its hardest to fight recovery in its own very faulty way. If I weren't diabetic, this probably wouldn't be a problem.

So I have to retrain all over again. I have to give my body time to readjust back to having blood sugar levels below 120 all day, preferably in the 90's, and exercise regularly to let my body know I want to USE the food I eat, NOT store it. It's a contest of wills, my conscious self over my unconscious automatic faulty programming. Who will last the longest?

This is my rug. Gotta go walk that second cup of coffee off now.

:edit: I've made my LoseIt profile public, in case anyone wants to join me or check on how badly I'm falling on my face, lol. You may need a community account before you can see it, sorry.

the shock of feeling normal

Kind of in a o_o place, but I'm liking it. Highest prednisone dose I've ever been on and actually feeling pretty good. I forget what it's like to actually feel good grinding through several months of rough.

And apparently I'm getting the hang of this, fasting glucose this morning was 88, blood pressure 134/80, ongoing food reactions and hayfever allergies finally seem to be controlled, and I'm SLEEPING. Huzzah!

In the past I've had some real love/hate relationships with steroids, and since it's only my third day I'm sure I'll run into something later as I'm tapering. This is also the longest taper I'll have been on, 12 days. Actually 15 total since the reaction breakout and the restart. I've known people who literally just live on prednisone for months at a time and always wondered how, because in the past I've been fairly miserable on it, but that was mostly before I understood how to control my blood sugar, I think. I've also gotten the bone pain that comes with steroid use, which I can very honestly say is THE worst pain in the world, including childbirth, kidney stones, migraines, and being thrown out of a wildly flipping car during an accident. Bone pain is its own speshul thang. This list of side effects is a bit excessive, but yeah, always risks. I've been on and off prednisone at least once or twice a year for nearly 25 years, thankfully in shorter bursts, but it's cumulative over time and I'm very lucky to be in as good a shape as I'm in.

Guess we'll see how it goes. In the meantime, such a relief getting past the last two months of packed ears and sinus and the resultant losing battle with continual histamine spikes. Histamines affect body systems in all kinds of ways and impact other health problems, and suddenly sent me cycling through a series of pre-crash scenarios because system overload. Of all the things I've lived through, I think the most ironic way to croak off would be my own body overreacting and shutting itself down during cytokine storm.

So this week is all about getting back on track, workworkwork, keep slamming through as much as I can while I can, and actually enjoy it because I feel so much better! Yay!

nutrition is taken for granted

This post is a desperate attempt to rip myself away from twitter on my phone. I've been up since 2 a.m., thank you solumedrol, and now I need to pull all my focus into getting out my door in a couple hours for an appointment with a nutritionist, which cracks me up. Gonna be fun meal planning around nut/peanut (includes mangos bcuz in the pistachio family), all citrus (pervades all things that taste good, avoid 'natural flavors' that spike flavor in prepackaged foods including salad dressings, sauces, and condiments), the bananas-avocado-potatoes trio because of latex, and now wheat. Which I'm really not supposed to be eating anyway because I'm controlling my diabetes without meds, and wheat in everything spikes glucose as badly as sugar does. I'm looking forward to a very interesting meetup, and it had better be for $84, because insurance isn't paying for this one. I figure I need the moral support right now, though.

Since my parents didn't believe in doctors and I was so terribly aspie (failing to communicate well) through most of my adulthood, it took a really long time for me and my medical team to figure out I'd been living with food reaction induced asthma for several years. I lived on cough drops for a decade before I got an inhaler, and then lived on advair for 9 months before it dawned on anyone I might be having deeper issues. When I finally found out I'm diabetic and changed my diet, a lot of that went away because I was severely curbing the carbs, and I discovered a carb rich diet was also causing other problems like IBS and bad headaches. Lost 50 pounds and started feeling a whole lot better.

Then the airway problems ramped up. Cashews were first, and it was nasty. I'd been eating cashews for years, so that was a big surprise. I was already suspicious of peanuts and had stopped eating anything with peanut butter because I was tired of the itching, but that blew up along with the cashews, and now I can't even touch something else that has touched something with peanut in it without itching and actual swelling. I purged my house. Then came the lemon. I'd already cut out orange juice for severe heartburn and limeades because my mouth went numby and tickly, but I love everything lemon. When that finally scared me with airway, I was almost devastated to give up lemon juice sqeezed on crabcakes and the rare piece of lemon pie, my fave dessert in the whole world. It's terribly difficult to purge citrus. Lemon isn't legally bound to be listed as an allergen and can get away hiding in ingredient lists in the form of 'natural flavor' in everything from salad dressings to condiments and sauces. I started making my own salad dressing. I was thrilled to find Annie's condiments and dressings, I can finally eat ketchup again without a reaction. Click this pic to go the to Annie's site. It's my way of saying thank you to them for helping me enjoy eating with all this going on.



So. Now it's wheat. This is my second round of steroids in 2 weeks and I got the rash this time along with the itchy tongue and croup. My allergist told me last year to take 2 zyrtecs twice a day and eat anything I want, and if I have a reaction then throw in some pepcid and claritin, crank benadryl round the clock for a couple days, and if I decide I can't live with the reactions, go in for steroids. Well, besides no one being able to live on that much zyrtec (my regular doctor pulled me off it after 3 weeks because I was such a zombie he was afraid I'd have a traffic accident), it's actually kind of dangerous to just keep putting your body through continual autoimmune reactions. And dumb. And sucky. Very, very sucky. No food on this planet is worth the suck I've gone through.

Let's put this into perspective, for those of you without food allergies. I can't walk into a bar without risking my life thanx to nuts and citrus. I can't eat anything out of a deli, fast food, or restaurants because of cross contamination with allergens. (Believe me, I've tried.) I can't enjoy other people's homemade goodies or potlucks no matter how diligently they try to cook for me because they don't realize how cross contaminated with allergens their kitchens already are. I check every single package before I handle what's inside or eat any of it. I'm braced for a reaction 24/7 everywhere I go because people naturally eat candies and foods and touch everything without washing it off their hands. And NOW I'm facing no birthday cake or nibbling on holiday goodies. Not even an oreo, which is peanut-free if I stick to the regular Double Stuf.

I hope you guys appreciate how much I really don't whine about this. And I hope I never ever EVER become allergic to chocolate and dairy because Hiland chocolate milk and packaged cheese is my go-to on the road.

Ok, those thoughts are organized and pushed out of the way now, time to wash my hair and get ready for the nutrition counseling.

autoimmune reaction disorder

I'm one of those lucky people who gets to carry a bottle of prednisone and an EpiPen pack around with me everywhere I go and then never uses them because I'm so freaked out by everything around me possibly causing death that I'm terrified of touching or eating stuff and generally slam a handful of chewable benadryls and make it to a clinic within enough time to get supervised treatment. My nearest clinic is 10 miles away and isn't even open to walk ins most of the time, so I wind up driving about 20 miles. My worst year, yes, I did call an ambulance and got emergency breathing treatment in my driveway because I had a bad reaction to my inhaler. We didn't know at the time I'm allergic to the propellent, but my doctor switched me to a different inhaler after that.

I'm also freaked out by allergy meds in general. Zyrtec, for example. When an allergy doctor tells you to take 2 of them twice a day forever, you go full blown zombie. By week three my regular doctor was disturbed enough by my behavior changes that he pulled me off it. I also weep when I use Flonase. I have no idea why, but one dose of that up my nose, while wonderful for my nose, induces such severe depression that the world stops point blank and I'm on the couch in a ball hugging a box of kleenex. These are just examples.

Diphenhydramine is my best friend. "May cause excitability." I'm one of those people who doesn't feel sleepy on Benadryl. I get really tired of it, though, so I take breaks. Taking a break at the height of ragweed season probably wasn't a good idea. I play a balancing act with my histamine levels (yes, I'm acutely aware of them)- if I stay in my house and don't do anything that will upset the balance, I can hold the benadryl down to a very low maintenance dosage (I know, benadryl isn't a 'maintenance' allergy med), sometimes just one chewable tablet every 12 hours. Of course, stuffing my face on a bowlful of yummy stuff I hadn't eaten in months and forgot was questionable wound up being a ridiculous slam through intravenous steroid the other day, and then a weekend of nerve-racking prednisone. THAT is the kind of thing the high zyrtec forever dose was intended to prevent. I'm not really allergic, per se, like the zillion things I react to don't show up on allergy testing, but since my body responds so thrillingly, I've been tagged as having an autoimmune reaction disorder, which can be every bit as life threatening as a real allergy. Most people diagnosed with that just do the rash/hives thing as a sort of lifestyle. I completely skip that and go straight to airway.

My biggest fear is that one day I'll start having reactions to the meds that are supposed to control the reactions... I try not to think about it. Once in awhile I entertain the notion that I'll ironically croak off from cytokine storm, having lived past several other things that could have killed me by now. If I ever suddenly disappear and never come back, just assume that happened. I know I've disappeared off the internet before, but I'm hoping I'm back for good because apparently keeping in touch with the outside world via keyboard has been so good for my depression that I gleefully get to skip head meds and not risk having more reactions to more pills, yay!

The point to writing this out is so I can get it out of my brain and get on with my day. If you are a 'canary in a coalmine' person, you're not alone. Consider this your virtual hug. I'm sorry it sucks, but distraction is awesome, so go find some!