By Any Other Name
the tale of Willow

Willow
Date: 03:34PM | Thu, June 28th | 2012
Subject: Attempt To Discuss My Family Visit #2
Security: Public
Tags:clothing, health: physical, stuff, thinky thoughts

There were things bought when I was visiting my mom and sibs. I spent more money than I expected there and for the month (I bought games prepatory to to help me calm down to go). But I needed (and still need a few items) clothes. One would think, the way my mom wouldn't stop talking about my weight loss than she'd do the bunch of buying - but 1) not so much and 2) the bulk of things she held up for me when we did go shopping together? I didn't like or I found too big for me just looking at it.

It was kind of bizarre, how what I bought for myself, she kept telling me to get a smaller size. But things she picked up to show me, didn't work with either my style or my sense of my body shape.

Meanwhile I was trying to take deep breaths for every comment on my size, my waist, my health and energy levels, what I ate. That last bit is non ha ha funny. because unlike Thanksgiving there were several times there was nothing in the house for me to eat. Times when things got bought and brought to the house I couldn't eat. The odd circumstance of being in a car filled with people nomming on Burger King and I'm sipping water. And my mom's apologising to me for it and it's just awkward and I spent a lot of time wishing they'd just not make a big deal over the fact I couldn't eat what they did and also wishing they'd REMEMBER what I couldn't eat.

I had at least one allergic reaction and one meal I couldn't touch cause they forgot and added capsacin pepper.

Meanwhile my sister thinks I'm girly for wearing skirts. And I felt caught in a strange; I like what I like. I don't think of it as girly or not girly. I like certain fits and I like certain pretty things and maybe my tastes have been modified by what's been available in my previous size - I don't know. I'm focused on comfort these days and things that make me smile when I'm wearing them either and I don't necessarily note the smile inducing is associated with something 'boyish' or 'girlish'.

Among other things? We ended up 'The Walking Company'. Teal deer - my sister needs chiropractic adjustments to her back and arch support. I ended up picking up very expensive non podiatrist arch supports and now am pondering getting a referral TO an podiatrist, because the budget blowing purchase? Led to me standing up straighter, walking easier (in fact raising the height of my cane) and reducing hip pain by 53%. I was able to walk about in a MALL, with a summer storm on the horizon and the barometric pressure up the wahzoo at near NYC speeds. I almost felt like myself again, like I knew my body. So now I have all sorts of thinky pondering thoughts about alignment and foot problems etc... And the long ass search for a PCP.

Even before the supports - I was able to leave the house every day I was there to go out shopping and do stuff for hours. I know part of it is that if I felt ill, the car was RIGHT THERE. I had a private place to go sit down and not have to worry how to get home. But it's also boosted my spirits somewhat to know how much better I'm doing on my thyroid medications. That I have more spoons these days than I'd realized. More physical spoons at least. I needed yesterday to try and recover some emotional ones.

Meanwhile I might ponder cheaper shoe support/arch supports. It could mean less expensive shoes, balanced by something keeping me in alignment (that could be put in other shoes) and a spreading around of my funds. Which I'd appreciate.

And I'll be pondering the wardrobe my sister and mother claim is FAR TOO BIG - which I thought was only a 'little loose'.

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Willow
Date: 11:10PM | Sun, March 18th | 2012
Subject: Medical QR codes intrigue me.
Security: Public
Mood:thinkyy thinkyy
Tags:health: physical, thinky thoughts

I wouldn't feel as if all this vulnerable making information was right there on display. It'd be easy enough to smack a busy body with a phone trying to take a snap. And a whole lot more information than can be crammed onto a piece of jewellery or even a wallet card can be included. Considering my long list of allergies? So much yay.

The problem to me, however, and this may be my lack of key point knowledge, is that it looks to mean businesses will be holding on to personal medical information. Even if it's just the amount you'd usually put on jewelry, in the medical short hand, etc. It'd still be an opportunity to potentially monetarize your profile for advertising, and/or who knows what, with that information in the hands of companies without any sort of ethical oversight.

It'd make more sense for doctor's offices, clinics and hospitals to offer it, and you pay maybe a yearly fee so they can maintain servers somewhere. But then again, hospitals and the like have already been outsourcing billing and records, which leaves one in that odd grey area again.

So what then? Considering I'm not sure how one would create a QR code / with what tech / under what circumstances, in order to perhaps host one's own 'Health Page', like the medical version of an old school 'Home Page'. Your personal presence on the 'Medical Net'.

More than likely, at least at the moment, branded w/ some 'advertising' at the bottom or incorporated somehow while the creation of the codes / the software remains not exactly every person accessible.

And yeah, I realize I'm not considering being in places in the world, where Emergency Response may not have a camera phone handy. In the same way that getting an alert bracelet in the language of your current home, may not always be helpful outside of it.

Random thoughts:

- That'd be some computer scanning and laser programming for etching on metallic jewelry, or silk screening and printing for that matter.

- I'm seeing notes of 'use our website for non commercial' use. So I'm actually pondering this, though it'd probably be only good enough for an extra card in the wallet - if I an think of a) information for it or b)a permanent web address leading to an html or scanned file.

- The thing that got me started on all of this, was looking up phone charms ->charms -> the most beautiful book form medical id pendant on a necklace I'd ever seen. Maybe because it's a book? And books calm me? Or that it could be 'closed' and thus private? I didn't feel like I'd be wearing a target on my back. Amazon's selling it right now. Though I did hunt down the website of the company selling it, and, I don't see anyway to request it come as just a pendant; though really how much does the 'chain' cost anyway. I also just tonight found a less, to me, pretty version, with less interior pages. This version, at StickyJ.Com comes as a keyring, but there's no peephole heart. On the other hand, immediate access to engraving, and whoa, so much money for that. Really does make me wish I could just have a page QR engraved. But how would you be thorough with the pattern at that small size?

Anyway, the 1st one comes with 'See Wallet' already engraved. So, I might put thoughts and savings towards it; once I figure out how I'd wear it. As a charm would be too dangly. And around my neck... I want to get into the habit of wearing it all the time. And I keep hearing my mother going 'Why you need that?! You inviting trouble! Why you marking yourself with illness!' and other things. And so the neck feels... wrong.

Hmm, I wonder if the pin could be removed, and another casped added so it could be hung like an id plate?

Ymm, maybe I need to consider more 'remove strap, see other side' stuff. Except.... such a LONG list of stuff. And wearing a flash drive? Ha, I say. Ha, me and my weirdo electric field.

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Willow
Date: 10:15AM | Fri, January 27th | 2012
Subject: Medical Question
Security: Public
Mood:hungry hungry
Tags:health: physical

Does anyone else have the experience of not being able to fast long enough to get certain medical tests done? I need to eat every 4 hrs. Even sleeping (is usually only 6-7 hrs), which means after I wake up, it's 4 or 3 hours of having to stay hungry to meet the bare minimum requirement for some testing. And that's too long w/o food. I get headaches, get dizzy, start feeling ill. I'd already made the decision earlier to get what testing I could w/o fasting. But now? Now after trying for 2 extra weeks, I'm doubly going 'Well eff that'. Cause it is just not happening. But I'm not looking fwd to more explanations to doctorly types.

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Willow
Date: 02:05PM | Wed, January 18th | 2012
Subject: Ow w/ Hope
Security: Public
Mood:I could cut you I ache so much I could cut you I ache so much
Tags:health: physical, pain scale 8

So there's good news and bad news. The bad news is that I've been in a truckload of pain for the past week. The good news is that, right now I'm fairly certain it is due to having nommed non nitrate (celery only) hotdogs and wine w/ sulfiles (red wine) over the past two weeks. I've had lower body cramping, leg cramping, neck cramping, chest aching and the like. I'm guessing it is affected by the weather, but it's able to be affected in the first place because it is inflamed. Which means, no more red wine - dark alcoholic drinks should probably be brandies. No sulphur.

Also, I should likely take it really easy w/ the alcohol. I do already, but easy even more. Alcohol is a depressant. It might not affect me as much w/o the sulphates. But this slight 'down/tense/sad/semi listless' thing I've been dealing with, might not only be lowered meds (temporarily I hope), it may likely be the alcohol too. I had some over the Xmas holiday, then the 1st week of Jan, and this weekend I opened the second bottle on my own. That might be too much alcohol for me. I'm probably only good for 1 week out of a month.

I'm really hoping a few days without the wine (which I used mixed in w/ something else - but luckily that traditional drink doesn't need alcohol and thus can still be enjoyed) will bounce me out of the pain levels I've been in; 6's and 7's going into high 8's. It's been really difficult being in that place again. Depressing. Mind numbing. Food allergies as part of a fibro fog/fibro flare is a possibility I need to strongly remember. Cause I did bloodywell survive extraneous holiday circumstances w/ myriad weather conditions pretty damn fine at the end of 2011. So....

Again I'm drawn back to my health and my body and the difference some simple modifications make to it - without me needing to be on various drugs that likely induce weight gain, bloating, other allergies, and who knows what else. It's such a difficult thing, negotiating side effects for a better quality of life. And doctors seem to so rarely coordinate that w/ patients. Just don't plain tell you - leave you to find groups of other patients going through the same thing to work it out for yourself (aka, fucking_meds, fucking_docs). I'm really grateful to have the ability to mitigate what I take like this. I know some others cannot. So I'm trying to do my best to remember it all.

It is kind of daunting though; wondering about my body's systems and the things it finds as overload. Will that ever go away, or lessen? Or will I need to deal with some things never, and other things in extreme moderation. I suppose extreme moderation is better than never at all. I should focus on that - yes?

PS: Just checked my food allergy list and have bolded and italized the pain sulphite cause. Cause DAMN.

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Willow
Date: 12:27PM | Tue, December 20th | 2011
Subject: *Cough, Sniffle, Hooooonk, Dribble*
Security: Public
Mood:ill ill
Tags:health: physical

Spent most of the night, up, using tissues until my nose got red and tender and sore. I always thought those commercials were, y'know, lying. Instead I have discovered, that little piles and clods of tissues do pile up and oh my pore dose. Meanwhile I need to go collect some 'sick' stuff, and some stuff for the trip. Which leaves me no time to visit Karnythia like I'd want. Then again, I have a sore and scratchy throat, so talking probably wouldn't happen no matter how much better I feel. And I should probably rest anyway. Feeling better doesn't mean I am actually better and well, y'know the drill, up too soon, fall over.

Meanwhile, bought minutes for my phone. They haven't come through yet since last night. So now, despite sore throat, have to be on the phone sorting THAT out. And thus feeling the sore throat. Oh, am I.

Also realized last night that none of my usual 'long trip snacks' will work anymore. Have settled on sausages (provided I can find the kind I like w/o nitrates) and OJ.

And wow, no transferred from customer service to somewhere else. Well, alrighty then.

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Willow
Date: 07:13PM | Fri, December 9th | 2011
Subject: So the itching I was worried about in Nov?
Security: Public
Mood:relieved relieved
Tags:about me, health: emotional, health: physical

I accidentally picked up the same shirt I was wearing then, thought it was clean. It wasn't. I'd put it aside, wondering if the problem might be the shirt. And low and behold - last night I noticed my arms were getting swollen and today? Itching. So, shower, calamine, shirt is in a plastic bag in a corner. Don't know if washing it will help it or not. Might be best just to throw it. Think what it might be, is the chemical I have to use to handle the house's bins to keep them smelling fresh might have blown back onto the shirt and well, I am chemically sensitive.

I'd much rather it be the shirt, than me. And once again, I'm grateful for the things I've learned this year; learned and remembered. So I no longer think when I feel badly, that it's all me, and there's nothing I can do and that I'm helpless and must just endure.

Still don't know if I can handle going to see a doctor (as I must do, to get my script so I can get my medicine). But that doesn't mean I haven't had any growth. Go me.

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Willow
Date: 11:03PM | Mon, November 28th | 2011
Subject: And now I go to bed.
Security: Public
Mood:exhausted exhausted
Tags:food allergies, health: physical

Sleepy and tired is really not the time, to realize after I've already swallowed the damn pill, that it's ferrous sulfate and I haven't thought of that fact in all the time I've taken it. Nor have I thought about the fact that it's yet another thing that was prescribed to me, despite my allergies (allergies in my medical files). Taking the damn pill was just habit whenever I realized I was feeling a certain way and might need a little extra iron. Nothing to do now, but deal with it. So, I will. But - head squirrels, and swirly brains yadda yadda, anger, supicion, eff damn near all I've experienced these past several years of the medical establishment.

Slightly related? Maybe I will, maybe I won't get into, at some point, what it meant to accommodate my dietary needs this past Thanksgiving w/ my family. But I did end up bringing home something that uses peanut oil, because my brother, who's also allergic to peanuts, can eat them. But my brother's allergic reaction is apparently milder than mine - a concept that I don't think sunk in too well. And had me questioning if my mother truly understood what I meant by bad reactions. Anyway, tired, sleepy, touched peanut oil. Took the stupid pill. Hopefully I'll only feel slightly ick tomorrow and can continue making the life choices I need to be better.

PS: I am getting fed up discovering all the ways I'd been obviously, trustingly, poisoning myself for the last few years. And getting angrier at how I deflected it all into myself with lots of shame and fear and brain weasels leading to layers of mental confusion.

I just keep reminding myself that this year, has been a learning experience.

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Willow
Date: 05:54PM | Sat, November 5th | 2011
Subject: Pelvic Instability. Sacroiliac Joint Dysfunction. Pudendal Neuralgia.
Security: Public
Tags:body issues, health: physical

Is anyone familiar with these things? Aware of resources for information? Sometimes I still hit a personal wall when it comes to self diagnosis. But sometime last week I realized pain in that area came with HEAT and a tenderness that hinted at inflammation, along with pain in related areas I'd simply ignored for years. Really, if it's not tipping me over my endurance threshold I can ignore it in favour of, well, getting on with life. But with my other health issues - the more I know, the better prepared I am, or will be to deal with things and make decisions.

But advice is welcome. I'm not feeling at all favourably towards 'doctors' atm. Which means I need information to know if I need to seek a massage therapist, a chiropractor, some other kind of bodyworker, if there are things I can do on my own, etc.

PS: I am aware that Pelvic Instability is attributed mostly to pregnant women. Doesn't change my symptoms in the least.

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Willow
Date: 03:56AM | Sat, October 8th | 2011
Subject: The Spoon Theory: Anxiety Edition
Security: Public
Mood:contemplative contemplative
Tags:about me, health: emotional, health: mental, health: physical, spoon theory

Went to bed 'round three, thought at the least I'd take a nap; if not, sleep straight through till morning. Woke up, it was 6 o'clock, thought, huh, I can sleep for another two hours. Woke up again it was 12am. Realized the prior 6 o'clock had been 6pm; the evening. Well now, there was nothing for it but to try and sleep till morning.But I'm up now. No more sleep just yet. Still, twelve hours to recover from yesterday and I feel much, much better.

My thoughts on anxiety tolerance/endurance have evolved into, well, the spoon theory. I only have but so many 'spoons' worth of anxiety and stress I can deal with and then -> exhaustion. Utter exhaustion which makes accomplishing anything else a near moot point; and it makes thinking horribly difficult. That's my level. That is what I can handle. And whatever therapeutic tools I gain, help me handle what spoons I do have in the most efficient way possible; help me realize that there are spoons and limited spoons at that (or knives or ladles etc). Maybe I'll find a medical doctor willing to pay attention to how trauma has affected my physical/physiological reactions to stress. Maybe. Until then, there's nothing for it than to do my best with cognitive behavioral therapy and the odd vitamins and supplements that help a body physically recover from or better handle the flood of hormones and chemicals that come with stress.

And I have done better, am doing better. Once upon a time some things would knock me out for a week or more. This stuff, I needed the rest of the day to mentally unwind, and 12 hours sleep and possibly the rest of today - though I might be capable of leaving the house today. We'll see. A judgement call is different than being physically too wasted to do a thing, however. The ability to make a judgement call, to ponder if I really am feeling better other than knowing I flat out couldn't do a thing; that's improvement.

So I hold on to that. And the tangible aspects of people being different and illness and factors and circumstances, making people even more different from one another. I've mostly moved past thinking of physical things meaning I'm broken beyond repair. They just are and I deal with them; whether my body can overcome and heal eventually (gain more spoons) or not doesn't change the fact of my current needs. If I could try and think that way about anxiety and stress and panic...? My mental health would be starting from somewhere more functional, I believe.

ETA: Notes inspired by Ephemera
"... fun loop where my blood sugar is low enough to make me feel like I'm thinking in slow motion and my digestive system is registering it's sadness at the lack of food by making me feel faintly nauseous thus I don't want to eat anything and can't decide what to do about it... doesn't take much in the way of conscious decision making "

That's what my 3 ring binder was going to be, a foody manual of me. I need to make that a physical reality. The Kindle's had 2 opportunities this year already to be a life saver; no power, and then no PSU for the comp. It will NOT be wasted money it didn't work for a foodie manual of me, and I need a 3 ring binder, some paper and a sticker or 2.

Knowing oneself is half the battle. I can't keep forgetting or getting distracted and muzzy headed about simple facts of me; food to blood sugar, to how/why I handle panic, stress and anxiety, to my relationship with exhaustion, etc....

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Willow
Date: 04:56AM | Wed, September 21st | 2011
Subject: Note To Self
Security: Public
Mood:aggravated aggravated
Tags:health: physical, note to self

Important: Skin peeling on wrist may not just be sulfate allergy in dish soap, may also be coconut dermitis. Dr. Bronners thus may also be affecting scalp health. 7th Generation = sulfate + coconut oil. Method = sulfate + coconut oil. Drop them all, see what happens.

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Willow
Date: 04:59PM | Fri, September 9th | 2011
Subject: Self Deluded Ego AssScrubs
Security: Public
Tags:d.o.n.e, health: physical, i will cut somebody, therapy / therapy day

This was originally going to be a summary post; my day, the rain, exhaustion, heavy therapy stuff, mild groceries, trash bins, feeling to exhausted to take the humdifier upstairs so it'll have to wait until tomorrow and about running into Dr. Suck from The Clinic Of Dangerous Incompetence & Lies (the one who's moving away, prompting insurance to call me and try to get me to pick a doctor even as I tell them I'm headed out the door to an appointment and they should call me back). As I was logging in, however, on the television (I had a Mythbuster's craving) came one of those 'IF YOU HAVE BEEN INJURED BY' lawyer commercials. For Actos. Litigious side effect? BLADDER CANCER.

Now I no longer care that when she saw me in the elevator (she was in the therapy building) what she remarked on wasn't 'is your blood pressure ok' and 'how are you'. But 'Oh, you've lost more weight!' And 'You're still with that other doctor, right? She's doing good with you'.

Yes. Me no longer being on destructive-to-my-system medications IS SOMEHOW ALL ABOUT SOME OTHER DOCTOR SOMEHOW DISCIPLINING ME INTO BETTER HEALTH less weight. And I sit down to comment on it here, and the commercial comes on about ACTOS, the drug that OTHER DOCTOR put me on (the one I also no longer trust; she who put me on a sulphur drug and then told me it wasn't a sulphur drug the names just sounded similar).

Face Punch Doctors. Face Punch Them VERY MUCH.

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Willow
Date: 02:07PM | Wed, September 7th | 2011
Subject: Rainy Wednesday
Security: Public
Tags:food + me, health: physical, shiny! i has it!, willow's warren, wth?

Had a bit of an outing with my landlady today. It was nice. The part where she stopped to grab a bite to eat was fraught though. She was feeling for Chick-fil-a. Even though I had the Kindle on me, I didn't think to check the menu online until we were in the drive-in line; mostly because I hadn't realized we were still going. I think I've forgotten what it is when people crave a food, since I have to ignore so many of my own. Originally it was a thing, but then I said I had foos issues and she said we'd figure out something special, but then we had to head back early, so we swung by... Anyway, I picked the cheese out of my salad, added some tortilla chips and some sauteed beef and made a thing. And I gave her the soup, cause it had noodles in it. In future, I check a menu before hand, or make sure I can see the menu. If I could have, I'd have noticed the soup had noodles, or seen if they had little GF signs up on different dishes. But live, learn, adapt.

I mean, I still ordered thousand island dressing on the spot, and then got home, tasted it and realized I needed to check ingredients. Sure enough - this emulsion had egg yolk. It's all taking some getting used to - but between today and Monday, I am beginning to feel like the biggest 'going out kill joy'. If I were more social, it's be all about inviting people to my home, where I CONTROL THE INGREDIENTS (the horizontal and the vertical). But I'm not. So that's not going to happen.

In other news, the great big 'OMGosh! Why is the ceiling leaking?!!!' Turns out, it wasn't the roof, and it wasn't the plumbing. It was the fact that despite our landlady buying the central air filter systems FOR US, the upstairs tenants hadn't changed theirs. So the system got backed up and filthy. Usually there's a cleaning twice a year. But we didn't get cleaned for summer, because the company switched areas. Anyway, the filter itself was filthy. I got shown it. I have a longhaired cat, and my own filter, changed every two to three months DOES NOT get as filthy as that was. That thing was FURRY. The fur had fur. And thus the upstairs system got clogged, things froze and leaked and it was a mess.

I keep boggling. She buys the filters FOR US. She'll buy most things for us we need if she can afford it or give it on loan, etc. So I'm seriously boggling. And I keep wondering if the difference is having actually lived with the landlady - in terms of her treating me like a housemate/roommate. Or if it's just about how the upstairs tenant is as a tenant.

But important news?! New box-cutter! It is yellow. Which is not as bright as orange. And not as pretty as red. But I like yellow. And it is in my little hands (so to speak).

ETA/PS: I also experimented with a smaller bag. I felt naked. I really did. It needs further study. And possibly a prettier bag.

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Willow
Date: 01:14PM | Tue, September 6th | 2011
Subject: Notes To Self
Security: Public
Tags:about me, health: emotional, health: mental, health: physical, note to self

Brown Rice: in myriad forms, does crust my eyes over the morning after, may induce itchies and possibly contributes to depression the morning after. Will I check with plain white rice? Decision currently unknown.

Movies: I did enjoy Attack The Block. I did not enjoy the volume. I spent much of the movie feeling accosted by the noise. It made listening through the accents difficult. Everytime I thought I was hearing people's words and started to relax, the music or atmospheric sound would swell, the speakers would get all 'happy' and I'd end up with my fingers over my ears, or trying to cover my ears with my shoulders (hunching down) and it was ugh. So I like independent theaters, I especially like the old fashioned large ones with curtains to swing back before the show begins, but I loathe the volume. I've noticed this before and somehow forget it. But it was so uncomfortable, now. I did wonder how everyone else wasn't feeling assaulted by sound waves.

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Willow
Date: 11:19AM | Fri, August 19th | 2011
Subject: Soooo
Security: Public
Tags:health: physical

A simple walk up and down the back allery looking for my misplaced trashbin and I'm exhausted, also feeling overheated and in achy-tingly-burning pain. This past week with the computer down my usual method of tracking my meds was gone. I'm going to guess I missed several, specifically my thyroid meds and am now feeling just what that means for my body when it attempts to 'do' stuff.

**collapses**

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Willow
Date: 01:24PM | Wed, July 27th | 2011
Subject: Not Really A Choice At All
Security: Public
Mood:cranky cranky
Tags:*sigh*, about me, health: physical

Would I, if I could, trade chest joint pain and/or shoulder joint pain for skin tingly itching as the way my body chooses to respond to a high barometer, coming thunderstorms and possible high humidity? No. I'd rather not have either. But apparently someone made a choice and nothing I did late last night would soothe it but constant rubbing (rubbing, not scratching, cause that would only cause harm). Now I ponder if I'll need a new scale. If this is the result of paying daily attention to and logging my pain - my brain got innovative.

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Willow
Date: 11:20AM | Tue, July 26th | 2011
Subject: Oh Dear
Security: Public
Tags:health: physical

It seems the problem with me taking Karela Powder, is that if it is lowering my blood pressure (haven't checked yet) and helping me get relaxed it means I have a lower state from which to be easily startled from. Heard what was either a car backfiring last night or two gunshots and I could feel the adrenaline pounding into my system; my stomach started to hurt, the small of my back, my head started to feel slightly spinny. Heard an unusual sound this morning too and the same thing happened; with the muscle tensing till it cramps etc. I have no idea how to calm myself down from ye olde panic attacks.

The odd thing is just last night I was wondering if I was imagining the bit of less pain I was in, and how certain spots on my body didn't seem as tight; pondering the level of tension I'm possibly living at all the time. Now I feel like not living at that height is bad for my health. I've been in bed for ages just trying to breath slow and calm down and stop hurting.

This sucks.

Meanwhile, in cuter news, cat is determined to live in my lap even when I'm typing; all curled up smaller than a breadloaf. I'm betting she hasn't liked the odd noises either.

ETA: Hmm, maybe the solution was to wake up and take Karela (though I'd had some just before bed)... Or... it was the SamE - huh.

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Willow
Date: 10:58AM | Fri, July 22nd | 2011
Subject: ...
Security: Public
Mood:stab the world stab the world
Tags:fucking docs, health: physical

Dear Doctor, I tell you I've been having copious allergic reactions, skin issues etc, I believe the drug you gave me does have sulfur agents in it and I've been affected! I state in my message I'm highly upset. And you have someone call me to say, it's NOT a sulfa(person could't pronounce it) drug, but stop taking it for 7-10 days and call back if I feel better? Really?! As if I can't figure out to stop taking the damn thing myself. As if perhaps I may not have already done that? WTF?

I can't do this anymore. I can't. I can't deal with doctors anymore. And I don't care if that makes me seem like some old woman stereotype with her herb teas and ointments and cats, convinced the young whippersnapper doctors don't know what they fuck they're doing. Cause it's a WHOLE lot of percent true, frankly.

I am tired, I am tired of my financial siuation being the dictate for what gets covered to test me, or treat me or mind my health. I'm really, really, fucking tired of feeling like a fucking problem whenever I deal with doctors and not like a person who wants to feel BETTER.

And this is the same doctor who promised me an increase in my thyroid medication and when I needed a new script/refills re-ordered just did the same old, same old, make-do.

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Willow
Date: 12:02PM | Wed, July 20th | 2011
Subject: ...
Security: Public
Mood:can't. even! can't. even!
Tags:health: physical, shit fuck damn

One of the medications I've been taking for blood sugar issues, which I was TOLD was ok for me, turns out it's a sulfa drug after all, just one that is usually tolerated. So here I am, wondering if all the sudden food allergies I have, might be my body unable to deal with any more allergic reactions, for things I usually have fairly good tolerance for. And I can't remember if the days I may forget to take the damn pill, or take it late in the day, if my skin STOPS ITCHING. And I've possibly been thinking 'Oh my skin just itches' despite the fact of having started using straight up glycerine on it in the past little while which seemed to be healing it and making things better. But allergic reaction to SULFA would explain the swollen face my mother wouldn't stop talking about, and y'know, the scratching, skin peeling till it bleeds stuff. And I can't do this medical doctor shite anymore (western doctor shite?)? I don't pay enough attention to things, I'm too used to feeling bad or thinking something's wrong or somehow blaming it all to being my fault for feeling like shit not to consider people aren't worth my trust etc, etc... I mean even if I was told 'but it's tolerable' I'm unlikely to remember that weeks down the line. It's taking advantage of my mental state and WTF ever happened to quality of life and... I'm upset. Really really upset.

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Willow
Date: 10:13AM | Mon, July 18th | 2011
Subject: Piss Damnit
Security: Public
Mood:frustrated frustrated
Tags:health: physical, whhhhhyyyy?, wtf!!

I've got itchy ears. I've had itchy years for two days now. Only change? I bought pineapple with last set of grocery shopping and have been having some with breakfast. Seriously body? Seriously? I can't lose pineapple. I just can't. So I will see if maybe it's the amount I've been eating. I'm still SERIOUSLY? This might be the runny nose and eye source? The whole quarter box of tissues in a single day?! I was so damn happy it was on sale that I could buy some! I didn't even consider I haven't eaten any in a couple of months.

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Willow
Date: 06:14PM | Sat, July 2nd | 2011
Subject: Semi Random Recollection
Security: Public
Mood:hungry hungry
Music:Inception Soundtrack
Tags:fantasy: paranormal, health: physical

Reading someone's review of the latest Anita Blake novel - I'm reminded of my childhood fantasy that I was actually a dhampire. And heaven knows it feels that way these days, with my sensitivity to light, and vibrations (all House of Usher) and my joints etc getting more painful as I get older and now this recent 'becoming allergic to all sorts of food'. In a story I wrote, the solution of course would be that I need blood; the older I get the more of my childhood humanity is wearing away.

Real life doesn't work that way though. More's the pity. Though I suppose some 'drug' out there could 'be' the 'blood'. I'm doubting it. Blood doesn't mess up the liver.

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Willow
Date: 02:29PM | Sun, June 19th | 2011
Subject: Bit of This & That
Security: Public
Tags:about my father, health: physical

Wished my father well (I believe today's Father's Day. If it's not, he didn't correct me). But it's also the weekend of his birthday, so there you go. In other news, the eyelid swelling and crud came back - and again, I b elieve this to be my body's delayed but in no way to be considered merely mild, reaction to allergens (in this case peanuts). **Sighs** Goodbye Reeses Cups.

Luckily Daddy didn't laugh. He just said, hey, some things happen to bodies later in life and now you know for sure and can protect yourself. I love my father, I really, really do.

Note: Peanuts(particularly dry roasted) = Blepharitis - Itchy eyes, pain, crustiness n'stuff.
Apparently someone can have a mild intolerance, which doesn't come across for occasional noms, but if they attempt to eat the allergen every day (and esp if there's stress).... which is what I'm pretty sure happened to my brother. And is definitely what happened to me with peanuts (and now I think about it, with gluten - and oh crap, possibly also with dairy!).

*Sigh* I wish I could find a nutritionist I could trust, one understanding of allergies and the like. But yeah, as a child I was under HUGE amounts of stress and had this eye situation; early morning crustiness n'stuff every day. And as asthmatic and was known to be allergic to several things (dust, pollen, etc).

Which takes me right back to just how darn easy going my Dad is about changing bodies, allergies, food preferences and the like. My Dad's probably a really normal father; willing to admit his mistakes, concerned for his children, wanting to be not their friend (perhaps until their older) but their parental confidant. But given my life history - it is just bloody amazing and gratifying.

ETA: Wait, what is this sprain-spasm pain in my back?

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Willow
Date: 12:59PM | Fri, June 17th | 2011
Subject: Well Then
Security: Public
Mood:thoughtful thoughtful
Tags:health: emotional, health: mental, health: physical, whoa

Sometimes being multiple, means have a memory like a fluid jigsaw puzzle. All the pieces are there, but they don't necessarily all line up at any one time to give the full and proper picture. Sometimes there has to be repetition to get a point across. So last night I had 3 bites of peanuts. I was nervous about it, but also really wanted to see if it WAS the peanuts. Somehow I could believe gluten had been damaging my insides for years, but peanuts? And that's despite the fact one of my sibs developed an allergy to peanuts - last night I wasn't seeing the picture. And that's despite having come to the realization that the heavy dark shadows that have been under my eyes for years, were allergy shiners; which have faded bit by bit as I've given up gluten and dairy and had my eyes looking even brighter when I quit it, with the peanuts.

Last night I had three bites of peanuts. Not 3 peanuts. But three small, half or quarter mouthfuls. Three bites. And immediately, though I thought it psychosomatic then, my eyes began to feel strange, the vision in the eye that I am now confident had been scratched, got blurry. The eyes themselves slowly began to feel itchy; lid and eyeball. Then the inner ear itching began - though I was not seeing the whole picture and didn't understand until this morning that that itching was REALLY SIGNIFICANT. I was just very annoyed and grumpy and feeling unwell. I was also feeling oddly bloated and swollen, there was soreness in my joints - which now I'd describe as extra achiness. My stomach felt a little gassy.

And now today, when I woke up, my eyes were all over sleep crud - just as how I'd reacted as a child to extreme dust, and still react to poofing clouds of pollen.

But there's more.

I couldn't sleep well last night and have just awoken (yes, wont' be making therapy after all) in full panic attack mode. I can type, but I can't speak. My heart is racing. I'm feeling jittery out of my skin. My chest is tight. There's something I'd never, ever, considered before; panic and anxiety as a response to allergens - food allergens. I mean, who'd have thought it. The panic that comes with a bee sting if one KNOWS one is allergic, well, isn't that justified? And if one doesn't know? Well, if one is in severe pain and a limb or body part starts swelling, wouldn't there logically be anxiety, trepidation and perhaps panic?

But what if (and I shall surely search engine look to find out) allergens in and of themselves CAUSE panic. A fact if this is widely known, several people with allergen reactions must SURELY be going 'DUH' right now as they read my little revelation. But it's news to me; it is news. to. me.

It's been several weeks since I felt panic even come near to hitting me out of control. Even the altercation with 4 door blue car and loud music didn't set off the jitters and shakes as I would have thought it would once I was safely home again. After all, it was also a strange man cussing at me. But instead I was wary that I could have gotten myself into trouble, hoping he would not enact a campaign, angry at his rudeness and uncouthness but not hypervigilant scared out of my mind that I'd gone waving someone's knife to my throat.

And this can't be the meds, cause I took them! This isn't lack of anxiety/blood pressure meds.

And wow, also to this feeling, this skn is tense, muscles are tense, mind is jittery feeling. I remember this feeling. I remember the twitchy prelude to muscle spasms and cramps. Wow. Just. Wow.

ETA: And today will be a tissue filled day, whereas again, have not had a tissue filled day in a good couple of days, possibly weeks.

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Willow
Date: 12:36AM | Sat, June 11th | 2011
Subject: Note To Self
Security: Public
Tags:health: physical, note to self

No peanuts for at least a week - see if eyes get better. Though if my sudden eye problems, come from me starting to use peanuts as a snack to help with the lack of certain carbs etc and the 3.5 hours till hunger - I just... Well of course I'll stop. But this sudden sequence of being allergic to every damn thing - what IS it? And also, uhm, who wants a 3lb countainer of honey roasted peanuts?

Le-fricking-sigh.

But minor search engine looking says eye issues + peanuts is WELL within possibility. So, I sigh. I sigh a lot. Especially since they bring up -extra- photophobia and I'm ALREADY extremely light sensitive w/o my eyes becoming even more irritated by light.

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Willow
Date: 09:41AM | Tue, May 31st | 2011
Subject: WTH World? Didn't I Outgrow This?
Security: Public
Tags:health: physical, question everything

I wish I understood if there was any correlation between stopping dairy and my current eye problems and extra sneezing and grump everytime I open my bedroom door and see the cat. Just attempted to vacuum. Am now sneezy and runny eyed. Grr. And of course the cat once again doesn't understand why I'm being avoidy. She must keeps trying to pet and pat me and climb up for her lovings.

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Willow
Date: 07:12PM | Mon, May 30th | 2011
Subject: ...
Security: Public
Tags:health: physical, pain scale 8, wtf!!

1. I may not be able to tell the difference between stomach pain/lower stomach pain and female body part cramps

2. Which puts aspects of illness in my past in a HUGE and illuminating light.

3. And thus counts my recent decision to have something with butter toffee in it (yeah, I didn't think) as an unexpected challenge to the concept that I have a milk allergy.

4. Which makes me wonder, a lot, how often I've mistaken allergy pain for something else (I seriously thought I was premenstral bloated. I begin to doubt now).

5. Which explains, perhaps, why my last set of blood tests where so WTF. I've been drinking straight up WHEY for a YEAR thinking I was being helpful and healthy.

Right now, all that's going through my head is 'Awwh crap'

ETA: I'm thinking it's WHEY, so much. Just checked some ingredients. Well fuck.

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Willow
Date: 10:26PM | Mon, April 25th | 2011
Subject: Ow but Yay! But ow.
Security: Public
Tags:health: physical, question everything

It seems the more weight I loose, especially off my stomach, the more problems I have sleeping, the more neck pain I have (now blossoming to shoulder pain) the more back pain I end up having later in the day. And it ruins my sleep schedule because I'm not sleeping as fully as I could, and then when I do wake up, I don't want to move, because I'm trying to stretch and have a few minutes as pain free as possible in bed.

So here I am, back staring at pillows on Amazon.com, to try and get an idea of what might work for me. When I was younger, a fiber filled pillow was what worked for me. And I've never gotten around to buying a case to stuff the fiber into to try and reclaim the torn thing. BUT, would it even work for me now?? My body is obviously changing in all sorts of ways. Heck, the fullsize bed I got in January is started to feel small. My toes are dangling off the edge, cause I need to sleep low down enough to stretch my arms in my sleep.

Wish I knew enough about cervical neck pillows to know if I just need one of those. Cervical roll?

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Willow
Date: 08:38PM | Fri, April 15th | 2011
Subject: Dear Self
Security: Public
Tags:food, health: physical, note to self

If you eat rice again, I will beat you. Send back ALL the rice and what you can't send back - hide, and throw away any dregs if you bloody have to, because IT DOES NOT AGREE WITH YOU. It makes you feel swollen and overly full and crampy and uncomfortable and a little digestion burny.

I know you think it can't possible be WORSE for us than potatoes of all things (and the books that say sweet potatoes are better still) but apparently THAT IS THE CASE. And continuing to hurt oursevles isn't doing us any good at all. So yes, while it feels impossible and wrong and unfair - NO. MORE. RICE.

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Willow
Date: 01:56AM | Fri, April 15th | 2011
Subject: Ow & Other Things
Security: Public
Tags:doctor things, health: emotional, health: physical, therapy with dr. yoda

I would start this about the strangely positive experience I had today with the Doctor I Don't Much Like or Trust at the Clinic of Suck. But that needs to be put on hold, because I feel like crap. And if it weren't for becoming much more aware of my body and the fact it has reactions to things; I'd be in a fear free fall because this bloody headache won't go away.

But I recognize this headache. It's just like the nitrate headache. So i am fairly confident the one medicine I started today? DOES NOT AGREE WITH ME.

So now, I guess I just wait for it to run out of my system and hope it doesn't bloody kill me tonight. Y'know that whole 'Have a bad headache, call the ER, get to Emergency cause your BP is high'. I'm not going. They'll just give me drugs to make it go down enough so they can release me, and it'll be medicine that makes my BP rebound w/o it and cause me more problems.

And at least today Dr. Needs To Catch A Clue, has apparently begun to catch one while I was away. She also seems to have a huge professional crush on the doctor I found myself and wants to work with said doctor with me as a dual patient (but, if I decide to hell with that, then to hell with that). She's apparently been to some integrative conferences and realized she was sucking the hard one and focusing on not upsetting her bosses.

I've got my referrals at any least. And she noticed how much more energy I seem to have, how much better I seem to feel compared to when I was under her care. I signed a release for them to talk to each other. But, well, we'll see what happens. I will at least make nice to get my referrals while struggling with the damn insurance plan administration. I did almost laugh though, when my BP increased instead of decreasing at the end of the appt, the way it usually does when I see people in white coats.

I'm glad at least that I got to tell her how much I didn't appreciate her fear mongering, or being treated as my symptoms and not a person. And how her focus on tests results and averages had affected me.

Truthfully though? The most empowering thing was being able to say and show that my quality of life is more important than what a set of medical tests say about my health. And that in her fear mongering and demands for results that had gotten seriously lost to the point where I felt like I lost myself and had to walk away from her.

I don't know if her catching a clue, there in the office and referring to an ongoing set of steps of clue catching was real, or an act or whatever. But I got a chance to be proud of myself. She still fell into some fearmongering at the end - but I think I'd feel differently about that if I didn't have this damn headache.

I also held on to Dr. Yoda's words about not having to do a damn thing I don't want to do. That doctors can advise me all they want, but I still have the ability no matter what to say 'No, I don't want to'. It's my health, my body, my decisions. Having that as a mental shield in front of me in the office is a HUGE help.

ETA: The barometric readings are high, but lately that's not been affecting my pain to these levels. Yay no gluten. Boo pill that changed that. Yay for hoping it passes out of my system fast.

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Willow
Date: 05:07PM | Fri, April 1st | 2011
Subject: --
Security: Public
Mood:dangerously borderline dangerously borderline
Tags:health: physical

Further notes on how Dentis Kid Friendly is better than his colleague? Apparently she could have told me to pick up some Act Mouthwash to remineralize the soft spots that have now become teeny cavaties. She didn't. He did, for prevention of future problems. I have no doubt part of the reason he did, however, is that he TALKED TO ME and and made me feel comfortable to talk back.

Still not dead. Still trying to cope.

PS: Yes, it is occurring to me, that it's not just home-life being whacked up that I've internalized as normal and thus don't ask questions/ check in about.

Comments open on the wild chance anyone wants to talk teeth and TMJ. I also need to buy a mouth guard/night guard. Not up to talking about my other health issues at all.

PPS: Also near none of the damn pens in my home work. I'm buying stationary, damnit.

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Willow
Date: 10:29PM | Thu, March 31st | 2011
Subject: Possible Non Suckage
Security: Public
Tags:depression scale 9.5, health: emotional, health: physical

My body may not hate corn. It, however, may seriously want to cut the bitch that is sodium nitrates. So no processed meats for me, now. Ever.

I have to wonder how many times in the last several years I've just taken being ill for granted when it may bloody well have had a food cause. Not that figuring any of this stuff out, seems to help any....

Haven't done anything harmful. Still want to. Not dead yet.

I have never been so jealous of Wolverine before in my entire life.

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turn the page
By Any Other Name
of Willow
January 2016