What is tiny and green and hurting all over?

I've been blogging most of the daily/weekly stuff on #pinkyblog, but since this one is 99% medical, it's going here.

I've had gallstones come and go for decades, sometimes they would just magically dissolve and then come back.  I guess thank goodness for being autism spectrum with a fibro nerve disorder, because I was done dealing with the pain long before a rupture, even though I've been putting up with gallstone problems most of my life. I've regularly passed them, very used to that kind of pain, but this year was really different. I felt short of breath and heart racy with the least exertion that got worse over time, and the worst of the pain referred left, so I was checked for everything imaginable, including pancreatitis and aneurysm. I've seen the pathology report after surgery. I got lucky, my gallbladder wall was only .2 cm even after months of being chronic. My mucosa was still intact, but I was a ticking time bomb this year jammed so full of little rocks and scattered particles inflaming the hell outa the surrounding area.

From the abstract The degree of gallbladder wall thickness and its impact on outcomes after laparoscopic cholecystectomy.
"A greater degree of gallbladder wall thickness is associated with an increased risk of conversion, increased postoperative complications, and longer lengths of stay. Classifying patients according to degree of gallbladder wall thickness gives more accurate assessment of the risk of surgery, as well as potential outcomes."

I honestly cannot even imagine reaching the point of rupture. So many horror stories are coming at me now from all directions about complications that I'm wondering how some of you or your loved ones are still alive. One doctor once called me a canary in a coal mine, aware of my internal environment long before other people normally are, and another told me I'd probably outlive everyone I know just because I can feel every little thing inside me making me a nervous wreck.

Since I've lived with autoimmune flares and resulting treatment wreaking havoc on my immune system, I have a very healthy fear of infection going out of control. I'm not easy to treat because med intolerant, so I confine myself to what others fondly refer to as my bubble world. I still go out and run errands, but I'm super cautious about not ever letting anything touch my face until I get home and wash my hands really good. I've had allergic reactions to simply absentmindedly scratching my lip, and I pick up germs so fast just touching things that I'm usually the only one sick. I've mentioned picking up hand-foot-mouth just from resting my arms and hands on chair handles in a waiting room and not being mindful of touching my hands to my face. I had no other contact with anyone besides my husband for the two weeks prior, and he never got it.

One of my biggest fears is CMV reactivation, because I've been living with a liver condition most of my adult life and possibly even my entire life back to around 11 years old. I had a discussion with a liver specialist one year about aggressive mega supplementation for long periods that I was subjugated to as a child, and it's very possible my stomach bloat and belly pain goes back that far. My liver was already sensitive when I started drinking in my mid 20s and I'm pretty sure I went through liver toxicity after sudden alcohol withrawal about a year and a half later. I've been watched for liver tumors after a ten year stint with lupus meds, and then had a few discussions about autoimmune liver disease after initial CMV infection swelled me up for months, which could actually kill me very quickly if that ever happens. The last thing I want to do with my health is make life harder on my liver.

Most people don't even think about their livers and don't know they live with stenosis for years. I've been very aware since my late 20s because my liver almost never stops sending out referred pain signals, and apparently was able to feel the imminent explosion coming on. I can't tell you what a relief the surgery was after months of pain referring, and after the horror stories I'm hearing from friends and loved ones now about their own and others' experiences with gallbladder emergencies, I'm point blank saying stop blowing yours off before it gets to the point where your life STOPS for immediate emergency rescue after a rupture. That level of inflammation and infection isn't easy to get over and recover from once that happens. That ticking time bomb is snuggled right next to an organ you absolutely cannot live without.

Save the liver! I saw when this original skit first aired. If you cannot view this 3rd party embed, you can see Dan Akroyd's French Chef skit -here-.

I just discovered someone has autotuned Julia Child. 😂

wizard level unlocked

I haven't been very bloggy over here, have I? But I do have a few things that need to be noted.

natural red light from a heat lamp bulb, not edited

First off, still have hair, yay! Went through a month over the summer where I lost a bit again, have a couple of kinda bare patches, but I think those were the roots resting and now there is new growth coming in there again. I just can't believe it's this long. I don't think it's been this long in over ten years. Again, diet change. Cannot express enough what a difference dropping carbs and adding more protein and some healthy fats has made. No other special anything at all because I'm allergic to everything- can't use product, no special vitamins or natural treatments. Growth starts on the inside.

That is also my real skin. too. No makeup at all (except penciled eyebrows, stopped growing eyebrows years ago), never mask or exfoliate, no cover ups of any kind, just the barest bit of Johnson's baby lotion because, again, I'm allergic to everything. Several years ago I had to be crashed off birth control (and then crashed off my thyroid med for a couple of months), and after I went through all that, a gyno specialist told me I'd start to see some aging now. I was on birth control for about 25 years, and controlled hormones have a lot to do with skin anti-aging or something. He's right, I've seen a little aging since then, but other people can't tell because I'm supposed to look older than this. I'm the only one in my family who's been able to tolerate birth control (we're all PCOS), but it wreaked havoc with my blood pressure and we finally just couldn't control it any more with meds. HOWEVER. My skin did not look this good until the last couple of years. It looked very unhealthy and gross because my overall health wasn't good, which leads to the next paragraph.

My diabetes is more controlled than it's ever been because I've become so used to naturally watching what I eat. (Remember, a doctor pulled me off meds because I'm so med intolerant.) My fasting glucose regularly ranges from 84-96 without even trying, but I still spike real bad if I eat the wrong stuff, so I can't just munch out willy nilly. Because my blood sugar stays in the normal range throughout the day (rarely goes over 140 on a snacky day, usually 130 tops after eating, and I know this because I test), I continue to have a much easier time with headaches, joint pains, and whatever viruses are going around than I used to in the old days when I was more miserable all the time. Also, I've noted on this blog what a huge difference keeping my blood sugar down has made on my anxiety, which in the past has been noted many times as "severe". All these things being so positively impacted by diet control means I can handle getting through every day with far less medication nowadays, which is awesome, despite what I'm about to write in the next paragraph.

My fibromyalgia has always been documented as "severe", but over this last year, several assessments during therapy programs have noted a strong fibrotic response (scarring throughout my tissues) that will probably need to be maintained regularly (deep tissue work to keep it microfissured as my muscles harden), several areas down both arms that had developed nerve entrapment (requiring deep soft tissue work), and "moderate" to "significant" localized arthritis in my spine (requiring more core strength and flexibility training). So far nothing terrible or immediately worrisome (although hella painful), but definitely will cripple me back up if I don't stay on it. When I first started therapies about 4 years ago and saw improvement, I thought each improvement would be another solid step up, but I'm finding out that reconditioning and healing aren't permanent unless they are regularly maintained. If I don't want to be crippled again, like I was from summer 2007 to summer 2014 (yes, that's how long I was descending and fighting my way back out of complete immobility), it's up to me to stay on top of being able to keep moving for the rest of my life. I know from hard experience that not a single one of the handfuls of meds they had me on for years stopped any of that, and I wound up having to get off all that stuff just to become functional again. I'm happy to say this last year has been my most functional ever since 2004.

Bringing up 2004 opens the door for cognitive assessment, because that was the year I went through brain fail and finally had to quit work and could barely handle going back to college for one semester afterward. I went from brainiac to ignoramous in a few short weeks, thanks to a viral infection that hit my nervous system and affected brain function. I lived with severe brain fog and memory problems for years afterward, but over this last year have started seeing remarkable improvement in capability and function. I still go through some brain fog and short term memory deficit when I'm tired, but considering how difficult it was to string sentences together into paragraphs and make a single blog post around this time 3 years ago (I really like that post, I'm glad I wrote it, took hours), I feel like I'm in the fast lane now, even though I haven't yet gotten back to what I was capable of before 2004. What I'm saying is, the sentences fly out on their own now. I don't have to think about it any more. I still make loads of typos, but after several paragraphs fly out of my fingers, I just laugh now.

The next bit is my favorite. I haven't gone autoimmune all year. I even got permission from my doctor to try to go autoimmune, really push myself and see if I could flare up, and even though I hit a few hard walls, it just never happened. I still have to be careful about autoimmune hyper response around things that trigger allergic reactions, but so far so good, best year I've had in a very long time. I have to wonder if a lot of that is keeping my diabetes controlled. My body is healthier, so it's not falling all over itself over responding to stress and fatigue.

The reason I started this particular blog was because I needed some place to write the truth about the person behind the other blogs, where I do way more fun and distracting writing. I needed a place to practice learning how to say the hard stuff without being a drag. Over time it became a blog of hope. You guys really would not believe how crippled and ugly I got for several years. It was so terribly depressing, and I really did believe I was going to die soon. You know what? I decided I'm not dying yet. I'm not DONE yet. I have more to do, more to say, more to see and hear and know. I'm very lucky that we have internet nowadays to help me find information and figure out how to apply it to my own life.

I know it's hard. I know you might not believe me. But I also know there's hope. If you are not willing to give up what's killing you, that's your business and your choice. It's not a sin to die naturally from old age and illness and just getting worn out. But in case you aren't done yet, go back through this blog and follow me out of your hell. If you want this, you can do this. You've gotta want it more than anything. You'll have very hard days (but when do we not?) and feel discouraged (we feel that anyway) and sometimes you'll backslide (that part is really eye opening for seeing how far you've really come), but one day you'll wake up and go Wo, how. did. I. get. here???  I can breathe again, I can bend again, I can smile at people again. I can THINK again. There are some wonderful moments waiting for you down the hard road.

We can do this, guys.

I have this hair thing- spoonie hair probs

I have met many women of all ages losing hair. This is something that has been happening since my grandmother's time, and her grandmother before her, yet it's still not really openly talked about and still rather looked upon as not only a mortifying deformity, but a shame, as if it means we've lost the essence of our womanhood. It's becoming more acceptable nowadays to live with hair loss, thanks to women standing up to cancer, but one day I hope it can be more of a lifestyle choice and not a losing 'battle' that defines who we are.

Ever since I was a little girl I have dreamed of having blue hair. I never saw people with blue hair except in a Cat in the Hat book. Click this pic to shop for cute little Halloween outfits.

I see pictures like this nowadays and nearly swoon with delight. That clicks to a pin on my pinterest board.

I have always struggled with my hair. I was born puny-ish with very thin delicate hair, so I struggled mightily through perms and colors over a couple of decades in adulthood. The first thing I tried to hide, mostly by parting my hair differently, was part of my bangs having been incinerated to the skin on one side and it took a long time for them to grow back properly, even in my pre-medication days. Funny story- I was on a date at Pizza Hut, had one of those giant fluffy perms, leaned a little too far over the candle and *poof*, my hair was on fire. Yep, I am the girl that caught her hair on fire in Pizza Hut  in the 80's and the next day all the candles were gone across the land. Your urban legend lives and walks among you. Anyhoo, thanks to the chemicals in my hair and the flash blaze, the scalp where those bangs were singed right off refused to cooperate for several years and I just got used to covering a minor glitch and mostly didn't worry about it. Everybody was going punk back then.

I started losing hair in my late 20's during my first big flare up. I grew up not going to doctors, so I spent 9 months in low grade fever and getting really skinny before I finally got scared enough to see a doctor. The first doctor was really old and on the verge of retiring and knew nothing about the new 'fibrositis' and lupus stuff showing up in the medical journals. He basically told me there is no cure, that I'd be in a nursing home by 40, and prescribed a giant bottle of aspirin. My SED and RA scores were pretty high, my core body temp refused to go any higher than 94 on a thermometer, and I could barely walk. The last thing on my mind was my hair.

A few months later with new determination I saw a rheumatologist in a city clinic who told me I was skipping down a rosy little path to a psychiatric illness because I told him I was losing my hair and hurting all over, but apparently what he saw was a normal looking college aged young lady. Young female bodies can hide a lot of problems, especially for men who can't see past "You look fine". He never ran tests. I was so crushed that I couldn't go back to a doctor for awhile. I have no idea how I managed to hang in there, but I'm one of the most stubborn people I know. Other people have mentioned that my intensity frightens them a little.

In the meantime, I started making jokes about the scalp tattoo I'd be getting if I lost the rest of my hair. I wanted a treasure map, with sea monsters in the water part and a real X marking the spot on the land part, with a dashed line leading to the X. I pored over pirate maps picking out what would look cool on my head. Honestly, I couldn't see myself wearing wigs because I'm so aspie I can barely even tolerate wearing a ballcap or a knit beanie in the winter. I grew up with headscarves like you see in old fashioned pictures of third world mountain women, but I'm terribly resistant to the whole head covering issue for women, and I can't imagine me keeping a scarf on, either, even for aesthetics. Why should my head not be as free as any man's? My rebellion runs very deep, not against God, but against the silliness of the human race. If I were to lose all my hair, what better way to live with it than with an awesome treasure map on my head?

A year later I was so desperate again that I dragged from office to office in a different big city clinic begging to be seen until a doctor finally took me that day, and after saying "I hurt here, here, here.." in all the right places (I had no idea at the time) I was immediately sent for tests and on to a rheumatologist who confirmed severe fibro and autoimmune flare up, and after that they handed me a giant sack of medication samples and started experimenting on me, which I believe saved my life. By this time I was shuffling very slowly everywhere I walked, couldn't open doors or carry anything, and could barely write my name on a check or grip a steering wheel. I was 28.

Through all this and then through treatment, my thin hair grew thinner, but as I was still able to hide it, I simply did my best to not draw attention to it. As the years rolled into my 30's and I was able to slowly increase my activity level, I tried perm after perm and several colors, and my hair always looked ok, although hairdressers continually expressed shock when they saw my head up close.

I was in my late 30's when I decided I couldn't get any more perms without seriously risking killing out the rest of my hair growth. I scared a poor hairdresser silly when the perm rollers started detaching in her hands with my hair still rolled up in them. She freaked out and started moving faster, and the only way I saved the rest of my hair was to make her stop and back away, only looking on as I bent over the sink very carefully removing them myself. I'm pretty sure I'd have walked out of there bald that day if I hadn't been so bossy. I tried to reassure her that it wasn't her fault, but I imagine she had a few nightmares about it.

Somewhere in my 30's my eyebrows also started falling out little by little, looking patchy and odd enough to have to experiment with pencils and plucking. Oddly, I've never lost hair anywhere else, but at the time I remember thinking alopecia wouldn't be so bad if I never had to shave my legs again. I didn't realize it's more complicated than that. None of my doctors have ever addressed my hair loss. I think it is taken for granted in the medical community that women with medical conditions lose hair on meds and if we have a problem with it, there is a thriving wig industry to save the day.

Think about it- wigs and head scarves have always been there for women. Why? It's never been acceptable for women to lose hair, even though it's not uncommon. Hair loss in women is such an abomination that we close our eyes to it, cover it up, pretend it isn't happening. I hear men talk about their suffering through hair loss- well, at least it's socially acceptable. Men are 'allowed' to walk around with patchy hair and balding scalps without that much recrimination. Women? Cover it up- fast.

I continued to color up until 40, even though I didn't need to (I've still never gone gray), as my hair color grew more dismally 'flat'. Years of medications and illness took their toll and I felt like I was on my last leg hiding my hair problems. This was my 40th birthday. Little did I suspect that my long hair days were nearly over for awhile.

Part of the autoimmune challenge is the impact regular viruses can have on body systems. I got slammed hard one year and lost so much hair that I had to cut it off just to stay ahead of clogging up the tub drain and hair finding its way into my cooking, despite keeping it put up. Hair was everywhere. I was afraid to brush my hair, so I bought a big-toothed comb and barely even combed it after shampooing. I made sure nothing stressed out my hair. All it took was a clip or soft scrunchy to inadvertently pull more out, so cutting it short seemed like a logical way to at least keep it attached to my scalp. This is one of my last pictures with long hair before I chopped it. You can see my eyebrows were already gone. I've experimented for years with pencils and different colors, never really satisfied, but whadayado.

This was one of the hardest haircuts I've ever gotten in my life. I transitioned to short slowly but it was still a shock. I still hate looking at it.

Here I am in the same shirt as a couple pictures back, but here is a couple years later. I was feeling very sick the day I took this, you can kind of see it in my eyes.

Me on the rebound about a year and a half after the last pic, starting to feel better. I learned that if I kept my hair super layered all over and didn't try to do anything with it, no one seemed to notice how patchy my hair was. The second I tried to style it or pull it back, very noticeable. I have to note that if it weren't for my sister insisting on dragging me into a salon and getting professional advice on caring for my hair while I was ill, I might have given up and just never tried to be cute again.

It's been 8 years since that midway haircut in the purple shirt. My hair kept getting shorter and shorter until I almost didn't have hair. I still can't bring myself to make those pictures public. I looked so bad during my sickest year that store employees would offer to get me wheelchairs and bring me things. That was harder to deal with than being sick, so I stopped shopping for a couple of years. Is it any wonder people become psychologically homebound? If I learned anything from my personal experiences it's that constantly having one's hair problems noticed can have disastrous personal repercussions in private later. My greatest asset during this time was having Asperger's, but even with the cushioning of a general lack of self awareness, I still had to face people reacting to just seeing me. After a year of curling up and crying in my cave I decided I'm done with that and proceeded to get very good at helping other people feel more comfortable around me, which is a huge social leap for someone like me.

What's interesting to me in retrospect is that I never was the sort for taking selfies until I got sick. I have loads of pictures of me with horrendous bedhead and really bad hair after I cut my hair off because I thought it was so funny. As I've begun feeling better, I keep taking really oddball pictures because I still think it's just so funny to be silly. I guess after going through the scary sad stuff for so long, it's a relief to come through to the other side and realize life is way too short to take that seriously. Here are some of my favorites.

This was Halloween last year.

Glue in my hair after an EEG.

I was prepared to live the rest of my life with icky and maybe even no hair. I reached a point where I was feeling better enough a couple of years ago that I realized I no longer care about my hair. I could lose it all right now and still be a happy person because there is just so much more to life than hair, especially when you've nearly lost everything else, too. I know that's hard to fathom, but it's kind of like realizing that the thing I was most unhappy with my entire life no longer had power over me.

I've talked in another post about getting healthier with diabetes and autoimmune problems by getting off unnecessary meds and changing one's diet and what a drastic impact that can have on skin health. I'm not here to say get off your meds or to tell you what to eat, but I do have to share my surprise- a hairdresser noticed a couple of years ago that I have new hair growth. Whaaaa???? Guess what. This came after a post I wrote called my problem with healthy food. Ever since I changed my diet, I have been growing new hair. It's been really slow going. I didn't notice it myself for a long time, but eventually I could tell it really was getting a little thicker, and best of all, had stopped shedding! I had become so accustomed to shedding hair for years on end that I couldn't believe it. I stopped being careful and started yanking my hair around to see what would happen- it stayed in!

It's been almost a year since I first posted about growing my hair back out. I didn't say much at the time, mostly because I'm not holding my breath. I know at any time I could plunge back into the black spoonie abyss with a flare up and more meds, and that every time something like that happens my tissues must recover from a lot of damage. Recovery and rebuilding tissue are two separate things. Recovery goes on all the time. Rebuilding can happen only when I have enough good nutrients coming into my body to spare for it, otherwise it all goes to sheer daily survival. The fact that I can actually grow healthy hair after twenty years of hair loss is stunning. It means something is working and maybe I'm on the right track. I hope. It means I'm finally on the winning side of inflammation going on all over my body, including at the roots of all my little hairs.

I know better than to assume my hair is 'back' and will continue. Yes, I hope it does, but if it doesn't, I don't want to wind up in a bitter puddle on the floor. I've been given a little time to enjoy my hair again, so I'm growing it out. I really missed having a french braid. Unfortunately, in recent years I've become too allergic to hair products to ever get it colored again, but I still love looking at other people's photos of them having fun coloring their hair vivid purples and pinks and greens and stuff. I love that it's becoming more acceptable to have fun with hair, and that people are so creative with their hair.

Now that the internet is so prolific and making everything easier, I'm finding all kinds of ways to have fun with hair. Too bad I didn't know about eyebrow toupees when I was younger. I get hives with adhesives now, so that one is out. And of course, now you can find every kind of wig style and color imaginable, so who knows, I might eventually wind up playing. Knowing me, I'll have more fun with it than most people, but isn't life too short NOT to have fun?

Click this next one to see a lot more blue wigs.

I made a huge mistake last winter and cut my hair off again after Christmas, on the advice of a new young hairdresser who insisted it would help my hair continue to get healthier. Sadly, I have wound up on prednisone a couple of times since then, and also had to change my thyroid med dose and start another med, and my hair growth has slowed down in response. I noticed my fingernails and hair are pretty synchronized on the ups and downs, so as I get a little shedding again, my fingernails also suddenly started peeling again. I know this is a protein problem and I need to stay on top of getting enough protein in my diet, but meds make it hard to eat right. If I want the hair, I have to give it a solid chance. If I don't want the shedding, I have to cut the junk food and keep it as easy as possible for my body to sort through the nutrients and use them well. If my systems are distracted with sorting through junk that slows everything down, the protein winds up going to continual recovery instead of rebuilding tissue.

This is my hair ~right now~. I never dreamed I'd ever see it like this again. This is the healthiest my hair has been in a very long time.

I'm going to get real brave and show you why this is a big deal, and why I'm ok now with losing all my hair if it comes to that. And I want all my friends and family to know it's ok to keep showing off your own wonderful hair and colors and perms and styles and all the fun you have with your hair, because I'll still love looking at it.

This picture is for all the women who are sad about losing their hair because of illness and cancer and hormones and stress and accidents and whatever else happens.

And this is me saying Don't despair. Maybe spray paint your scalp with glow in the dark and glitter and I'll be right there with you when the time comes.

If I ever lose all my hair, I'm going to have a ball and post selfies like crazy. I'm not going to cover it up or hide it, and I'm going to be happy that I'm still around to love my kids and grandkids. Well, ok, I'll wear a hat in the sun and bitter cold wind, but you can bet it will be a ~fun~ hat.

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!