All 'Roidy Ready Roo: Forty-Fun and the Itchy Bunny Moms

Excitement abounds. Summer is gonna be a whole different animal this year. Week and a half ago, we ditched Allan with my mom for the first time in two weeks of Gramma visits (oh boy, foreshadowing, since the next time is coming up next week) in order to get ...

OUR SECOND SHOTS!!!

That's right, next week we will count ourselves amongst the "fully vaccinated." 

We thought that the extreme fatigue and other reactions some of our acquaintances had gotten in response to the pfizer was a good reason to not take care of Allan the day after our shot. And let's face it, I get all the wonky side effects. I mean when I took diflucan I woke up in the middle of the night shaking with the worst reflux of recent memory. When I took metronizidale I lost sensation in my fingers. Etc. etc. So she got a bonus Pam week. 

Meanwhile, Andrew had a slight headache and a sore arm. I had... absolutely no reaction. Including much of a sore arm. I think they gave me the saline injection? Who knows. My skin's been worse but it tends to flare up every few weeks anyways and especially during grass season (or "we have a cat" season, even though I am definitely aboslutely not technically allergic to cats... bah!)

Well, I guess it's really hard to pinpoint "side effect" when you feel a lot of them frequently anyways. What tired? I'm always tired. Headache? Yeah what else is new? Weird cold achy feeling? Must be Tuesday? Yeah I know I know. It sounds like it can get pretty distinct.

 I"m bummed we missed on the fatigue because my usual tired isn't the kind where I can just sleep and sleep. It's more like i lay down and feel restless and if I get a nap during the day I sleep less well at night. That sick kind of sleep where you just sleep and sleep... that sounds kind of lovely. But oh well. 

Turned out I had a lot of work to do, so it was a good week to have a few days free. My work is a little less steady than I'd hoped. I spend a lot of time waiting around being told that a bunch of work "is coming" but it's held up in approval or something like that. Then all the sudden, I get a crapton of work and I scurry through it like mad. And then... drought again. Ah well. Like I said, it was good timing. 

We had some nice couples time and several movies. And then on Saturday we drove out to retrieve Allan who came home with only a minimum of protest and even let us bathe her (I think the promise that we would then bathe Froggy helped a lot). 

After much angst, she then managed to make a card for our wonderful neighbor who had graduated her masters.She and her hubby invited us to our very first pandemic party! So we went there shortly after getting home with Allan. She was fairly charming most of the party and promptly demanded that we leave when she realized that there wasn't going to be: (a) a gift opening portion, (b) party favors. 

She was pretty crazy wild that evening, because this is always the pattern after Pam's. She can only have so much fun before going wild. But on average, Allan actually has been - knock on wood - chilling out about bedtime. We get a few good nights where she's 100% onboard with journaling with us. Love those. 

As well as reading. We're tag-teaming through The Wizard of Oz, which is far far more delightful a lark of a story than the collectively remembered story inherited from the Judy Garland affair. I remember being obssessed with Ozma when I was a little girl. I don't remember her at all except that I wanted to be her. Hopefully we'll make it through the rest of the books with Allan's indulgence. 

Usually Miss Thing comes out of her room maybe one to two times, but goes back without too much resistance and opts to go find Andrew instead of waking me up in the later portion of the evening. Well last night she woke me up to announce that she saw a half-moon and I yelled back "that's great Allan" and that was that. SO far... fingers crossed. 

But the excitement doesn't end with vaccinations and busy weekends. 

Oh no, because Andrew decided to up and fly right to the next new generation... I'm married to a 40 something now!

It was a pretty mellow event, involving cupcakes: 

And cards: 

And a brief moment when Allan realized that we didn't have birthday candles or a lighter for daddy's cupcakes. 

This week was also the anniversary of our havaing purchased this house, so our amazing realtor, Sierra brought up over a mixed birthday/anniversary gift

Allan confiscated the balloon immediately. We hide the cookies for a few days and had them once the massive oversupply of cupcakes was finally addressed. But they were still delish!

And the fun doesn't stop there. Because my next week should be plenty exciting... 

After a year, it's time for some more... 

Allergy testing! I've been talking with an immunologist (curious about something called Mast Cell Activation Syndrome, but any allergic reaction is mast cell related so it's all in the same boat and they're all getting worse).

 She went over my medical records pretty thoroughly and had some initial curiosities about autoimmune that have mostly evolved into "probably allergies".  So more thorough extensive testing over the course of two days. 

After that, I have to run through a list of "tried that" stuff for insurance before i might qualify for something called xolair. It's a biologic that helps with asthma (not my issue) and hives (definitely an issue). There's also a biologic called dupixent for dermatitis but that's known to cause eye problems and my eyes are already fussy so I'm holding off on looking into that.  

So far, I can't take more than 1 antihistamine without my dry eyes, nose and mouth becoming totally unearable (not that nosebleeds and not being able to see isn't fun). The "four" that I'm supposed to take is definitely not happening. So, that maybe isn't the solution. Next is quercetin, which may not be doing as much but isn't blinding me so that's an advantage. 

I'd really really like to get my skin under control, because it is one of the most persistent irritating symptoms (though the way my throat gets swollen and clogged around any strong scents, chemicals, and cars is probably more longterm concerning). But... 

I have "princess skin," named in honor of the princess and the pea. It's very very reactive and it's kind of hard to tell which of my issues is behind it. I have atopic dermatitis, allergic contact dermatitis, AND urticaria (hives). They're all different but look and feel a lot alike at times. 

Dermatitis has to do with the skin barrier being compromised and inflamed. It's not totally clear why or how it happens ot people, but there's an allergenic component, a genetic component and some say it's its own autoimmune disease. The compromised skin barrier lets potential allergens in, and eventually the body gets sensitized and you also have allergic contact dermatitis. It's mediated by T cells and takes a few days to manifest after an exposure. So very different than hives, which are an immediate IgE mediated reaction to any variety of allergens or build up of histamine. In their extreme forms, they're easily disinguishable. But in the middle, it's a morass of inflammed and itchy. So I can't always say what the deal is or how to treat it. 

for example:  

• When I make skin to skin contact with myself or others, the point of contact will start to sting and get red and blotchy. The red blotchiness fades after an hour or so but the stinging lasts a while longer. It's worst on my chest where the skin is most delicate. This could be cholingergenic hives/sweat allergy or it could just be irritated and raw excema. Both have issues with sweat and sweating also makes my skin sting. Not sure. It's worse on days when I'm itchy and probably have had more pollen or dander exposure, so... that. 

• When any part of my skin gets extra pressure on it - say from elastic or a seam or a way I'm sitting or holding a bag etc - those lines will indent and get red. I wake up with a million ruddy impressions of the bedsheet wrinkles. If it's a little more pressure, it will turn itchy or sting and may eventually rise up into these raised lines instead of indents That's called dermatographia. But that only happens to me sometimes. Those areas often break out in little itty bitty rashes as well. 

• When I wear bandaids or most medical tape, I definitely react immediately. If it stays on for much longer, my skin gets plenty inflamed and i get dermatographia.

I've learned not to scratch as if my life depends on it. My skin likes to look totally normal and itch like the devil. Knowing if I dare to scratch it will go all broken-loose-hades on me with every manner of rash and welt... It's a constant taunt until  accidentally rub against anything or somebody affectionately puts a finger across teh area and it can happily get red and angry like it always wanted to. 

So I don't know how much xolair would help my problems. But they all seem related, so it couldn't hurt. Well it could. There's always that chance of paradoical reactions and hell it can cause anaphylaxis. But most odds say probably more helpful than not. 

I've tried following a variety of diets, including low nickel (nickel allergies can be systemic and react to nickel intake from food) and low histamine (most common diet for hives, LPR, and anything allergy related when you don't have specific foods to avoid). And of course low FODMAP. I can't really tell. I don't know how anyone ever tells. The lists are always confusing and contradictory. The various other factors in day to day life seem to confound any clean test. I keep a food journal and know a number or triggers for my reflux but the other symptoms are a little dodgier.  

But basically my skin is busted and busted enough it's hard to help it much. 

I've given up on making myself up or using any fancy creams since everything is potentially and often actually irritating. 

It's all had a particularly formative effect on my inimitable personal style. I hope the next generation will herald me as a fashion icon. I call it PRINCESS:

* Scent: All fragrances are a huge problem. Even if Andrew's been around a friend wearing aftershave... or washed his hands with a soap at work.. or hugging my bunny girl after she's been at my mom's house: enough to trigger a reaction. So definitely not for me directly. Essential oils are maybe ok for my skin (but I react to plenty of natural oils, so not guaranteed) but then make my nose and throat irritated. 

As such, I usually smell like a mix of: grapseed oil (sometimes it gets on my clothes and goes rancid in the dryer unfortunately, so it can get strong), vaseline, coffee and vinegar.. And myself, though I do still wear deoderant so not like MYSELF!!! Not all the time anyways. Sometimes it just doesn't take or I forget.

*Intimates: Bras are a hell of poky and squeezy, so they're out. Thank god for my modest decollatage. Undies are begrudgingly worn most of the time... most. I have cut the elastics on most of them and wear them at least a size too big to stop that stinging imprints. 

+

* Tops: All cotton of course and usually loose. Frequently inside out (I know - retro chic with a modern edge) so the seams don't bug me. I'm finding that the collars of most shirts and any seams that hang on my shoulder are especially irritating and rashy so I am tending towards boatneck and seamless shirt tops and wearing my over layers, jackets and coats at the edge of my shoulders. 

Bottoms: Oversized skirts that I keep on my body by scrunching up and tying up with a ponytail clip. This frequently loosens over time and starts to fall off of me. I am in a constant state of pulling my clothes back on myself. But better than the elastimarks. 

Going out-out: Since my allergies include plenty of aerosolized issues and things that are commonly used in cleaners and the like, I try to keep my body very covered. So I add some pajama pants under my skirt, white cotton gloves and, a head scarf sometimes. 

The button down shirt is another godsend, since it can button up to my neck and reduct exposure that much more and doesn't have a ton of seams across my chest. 

If I"m going outside-out on a high pollen day, I also might wear my sunglasses or... if it's too dark for that... well..

These safety glasses are a lot bigger than they looked in the picture!!

Usually I look more like this:

Andrew's a lucky lucky man... I assure you I'm at least creative about the weird skin reactions to direct contact. 

I'm definitely worried about the world reopening but also optimistic that this immunologist as least seems to want to treat me. Most doctors seem like they check out anything obvious, realize I already have and just shrug and say "well good luck!" Which is... annoying. There are some new medications and biologics that are still in testing phase that also have promise. So I'm not giving up yet. But I will probably stay a bit more hermit like in the post pandemic world. 

So... exciting week coming up. Allan's going back to Gramma Pam's for my two days of driving to Bellevue (cringe) and getting poked with needles a bunch. Also I'll be on steroids again, since you can't take antihistamines for a week before the allergy test AND you also can't be an inflamed mess. I am not looking forward to more prednisone (it was a friggin' nightmare last year) but this should be at a 1/6 to 1/3 of the previous dose, so there's that glimmer of hope. 

And just for good measure, I'm dropping by the neurologist's office in teh middle of all the steroidy hivey withdrawal! He's gonna say "hey are you all better now that you are avoiding B6" and I'll be like "it sure was a problem, but... no. Then he'll offer me several antidepressants that might help but would definitely do the same drying out thing that antihistamines do and I'll ... I don't even know. It'll be interesting to find out. Especially since I'm going while raged out on 'roids!

Andrew... may eventually have to get a primary care doctor in order to finish his disability insurance application. 

So that's all balanced well. Should be an interesting week for all involved. 

Wish us luck!