Thoughts on my ill-aversary

Today’s my ill-aversary. The last day I remember being well was October 19, 1994.  I was 15 years old, and spent the day with my friends, painting @ a hospice with a volunteer group, then running around Boston via the T with the kind of joy that only those who’ve just recently been allowed to go places unsupervised can muster for subway rides.
The next day I woke up unable to swallow and I felt like I was wearing a dozen coats made of lead.  I was exhausted in a way I’d never felt before, I had a super high fever, tears leaked out of my eyes when I tried to move, and (what turned out to be the first of so many unhelpful) emergency room visits told me that I would just have to wait out my “unidentifiable virus”. Except it just never went away. 
From there, to mono, to ‘infectious process undetermined’ to ‘autoimmune disease as yet undiagnosed’; through CFIDS and Fibro and POTS and asthma and walking pneumonia and shingles and ‘genetic issues’ and migraines and whatever the hell else is wrong with my immune system and disaster area of a body at this specific moment in time. Most days, I figure I have a pretty good handle on how to live the chronic life.
But today, when I remember the girl I was 19 years ago (and knowing full well that who you are when you are 15 is awfully different from who you are when you are 34, chronic illness or not) I’m sad for her.  The girl who thought she was going to be a dance teacher, and woke up one day unable to stand long enough to turn the music on for her class. Who tried to keep dancing but, eventually, between the passing out and the feeling like she was having a hard attack every time she moved, had to stop. The girl who was shy but worked so hard to make new friends, who saw a lot of those friends disappear when her symptoms kept her home, again, always.  The girl who just didn’t understand why she couldn’t MAKE HERSELF GET BETTER, no matter how hard she tried, no matter how closely she followed the doctors’ directions, no matter what witchdoctor-y potion she willingly swallowed.
I want to go back and give her a hug and tell her I believe her: which was the thing she needed to hear the most back then, when even the people that ‘believed’ her had their doubts. When even she had her doubts.
I want to tell her that - even though she won’t get better (and will, in a lot of physical ways, get worse) - that it’s still worth sticking around. That the chronic/spoonie life is definitely living life at the hardest level, and I’m sorry we have to do that, but we are going to do that. Even when it feels like we absolutely can. not. for. one. more. day.
There was internet when I was 15 - bare bones internet: DIAL UP internet , but there was no Tumblr (There weren’t dinosaurs either, though, you whippersnappers): at first, I was so alone with my illnesses that I might as well have been in Siberia compared to everyone around me. My friends didn’t get it, my family often felt I was exaggerating, my doctors kept saying to push myself harder, not understanding that - the type of kid I was - I would push myself so hard that I wound up in the hospital (a lot). I remember that girl, and how alone she was.
And then I found the corner of internet that I needed to find: There were listservs (which, again: dinosaurs), filled with other kids/teenagers who were just sick as I was. Who got it. Who didn’t have the words ‘complainer’ or ‘lazy’ superimposed over their mental pictures of me. Who helped me understand that I was more than just the sick girl.  The CFS-Y (and later CFS-20s) groups were my link to people like me: and once I knew they were out there, I had to keep finding them.
From the listservs to forums, to my own blog and the blogs of zillions of other spoonies, to Tumblr - I honestly don’t know what would have become of that girl if she didn’t have people who understood, somewhere out there in space, to talk to. And not just other spoonies, but just people who listened and got it, and let me talk, and heard me. Even now, when I’ve got a family who (mostly) gets it, and friends who try: to have this space out here to say what I need to say, and to see that there are other people who are dealing with the same crap as me? It’s invaluable.
IDK where this is going: I started out feeling really sorry for myself because, 19 years ago, I was a different girl… Who isn’t that true for? And I’m still sad for me/her - for that life I wanted that wasn’t to be.  I’m sad today for the things I want (work and family and adventures) that just aren’t possible for me right now, because of how sick I am. And that sucks, big time. And it sneaks up on you, even when you think you’ve got a handle on it.
But also? I want to say thanks; Because the only reason I’ve even partially got a handle on it is because other people get it. Because there’s people out there listening. And sharing their stuff too, to make me feel less like I’m stuck in Azkaban all on my own, Dementors roaming & waiting for me to try to escape.










(cross posted on my tumblr)

Yes, totally amazing: now give me my meds and shut the hell up.

What did I say I was going to talk about tonight? 

How about strep throat?  Was that it?  No: I didn't think so, and yet, there it is. 

I spent the whole week hoping that my throat was just raw because the music was So. Loud. at the wedding on Sunday (I am the old person you all hate - Why does the music have to be that LOUD???) so to talk to anybody, you were basically yelling.  All night long.  I just figured I'd strained my voice a little.

And that probably was some of it, but then when I went in for my shots on Wednesday and some man in the doctor's office coughed directly on me.  Like, right on my face.  And didn't even give me the courtesy of an "oops," let alone an "I'm sorry, I just gave you the plague, would you like a Kleenex?"

So when my throat was about a million times worse this morning, I gave in and called my primary care, who was, you guessed it! Out of the office for the day, but her on-call covering doc could see me at three, would that be okay?  Sure.  Whatever.  Fine.

They called three times between 10:00 this morning and noon to rearrange the appointment times, and I was ready to be like "Never mind: miraculously healed! Just stop calling and making me TALK - did I mention my throat hurts?!", but then they did stop calling, so I decided to suck it up and go.

Now, the only new symptom has been my throat - nothing else, no coughing or wheezing or sneezing or anything, so I just assumed the covering doc would look at the red rawness, stick one of those sticks down my throat, and write me a prescription for the strep throat antibiotic I obviously need.

Isn't it hilarious how I'm still optimistic (and stupid) after all these years of dealing with doctors?

No it was: Let's talk about why you're in the wheelchair (because it might somehow be relevant?), and What do you mean it hurts when I press on your neck and lymph nodes (they hurt all by themselves, lady: don't touch!) and Are you sure you had bronchitis a few weeks ago? (Well, maybe I had a brontosaurus a few weeks ago, but I'm pretty sure it was bronchitis.)  Literally, let's just retake your whole history, for a strep test.  And then?  Still not give you any antibiotics.

No, after hearing that I'd had bronchitis a couple of weeks ago, and three or four sinus infections this year, the on-call doc decided that I might just have another sinus infection, and gave me Flonase.  Which... doesn't treat sinus infections.  (Or, at the very least, doesn't treat MY sinus infections.)  Told me to gargle with salt water (which I've been doing, and I hate, and blech).  Or it could be allergies, although allergy season is mostly over....and I'm on no less than three allergy meds. Whatever.  Definitely helpful, thanks!

 And then she preceded to talk for fifteen minutes about how interesting POTS is and how she's never seen anybody with that, and isn't it amazing how many ways the body has to adapt to things?

Um... no? 

My body is MALadaptive, lady.  It is adapting poorly, not "amazingly."  And I don't care if you see patients like me every single day, or once every 3000 years, could you just stop chattering on and on and actually treat what I'm here for, so I can go home and be sick in my own damn bed?

It was frustrating, to say the least, and the thing that makes it worse is that if I had called yesterday, instead of waiting to see if it'd go away (like a dope), I could've called Zack's office, and the nurse there would've just sent my antibiotic rx right through... I kind of having a standing order.  But they're out of the office today, so I figured the primary care was my next best shot.

Turns out my next best shot would've been attending medical school myself, so I could write out the damn prescription and stick my own little swab down my throat.  Next time. 

  

Fail

My latest drug trial was a big huge fail after one day on it, I had a killer migraine.  The second day, the migraine was better, but I still had a headache and now I had that pins and needles feeling in my arms and legs as if I'd fallen asleep on all four of my limbs at the same time.  But I didn't call Zach until the third day, as pre-arranged, because, if you've started enough drugs, you know sometimes, there's a hump you have to get over.  With the Lyrica, it was like living in Wonderland for the first few weeks.  Some of the other drugs have made me nauseous, others made me super tired (on top of my already exhausted state), one made my sense of taste disappear for a week, a couple of others have done really strange things: I'm almost never surprised.

Except, when I called Zack, he was surprised that I'd kept taking it.  "Why didn't you call me sooner - you don't have to put up with that?"  Um... obviously I do, what world is he living in?  "But it's good that you did, because that tells us something relevant"  To Zack, everything is relevant, even if he can't figure out how yet.  "Mmhmm."

So he called me back after consulting with a neurologist and this is what they come up with: the migraine and pins and needles (some sort of thesia) as a result of that specific drug show that my migraines in and of themselves could be playing a larger role in my whole pain syndrome issue than we've been assuming.  So, new treatment plan: botox for the migraines.  So he says to me, over the phone at like 5:30 on Friday afternoon.

Um, what?  You want me to get Botox for my migraines, which suck, granted, but ... we've figured have been pretty much under control, right?  Wrong.  "Maybe the tension in your neck and your jaw and your nausea are more migraine centered than we've been thinking, and this would help with that." Hmm... that's actually kind of sensible.

"At the very least, it will help with the migraines, give you fewer of those, and that'll be helpful."

Now, I'm starting to get behind this plan.

I have to do a little bit more research first - since a)needles in my b)face sounds c)horrible to me - but I could get behind this, even though I'm pretty sure it'd do nothing for most of my pain.  The fact is my headaches have been pretty deadly lately, so I'll take all the help I can get with them.  But this is just another example of how what you think you're dealing with when it comes to chronic illness is NO WHERE NEAR where you wind up.   

A little health catch-up

Got knocked out of commission by a wicked cold sometime around the middle of last week, and I've been struggling to reconnect with my brain since then.  (Fevers are not my friend.)  It seems like all bad news around here, which makes me not want to write anything because it's so depressing and all of you all have been so great and wonderful and supportive, but who wants to listen to a person complain forever?  Nobody.  Especially if it's not entertaining complaining.  Trust me: there was nothing entertaining about my cold, the sinus infection that followed it, or the fact that every drug I took seemed to make things worse - What the hell, steroids?  Why do you make my fibro flare?


Only thing I can say is that when College Roommate/Best Friend asked me if I would be Baby Olivia's godmother, I said I'd be there in the church 'unless I was in the hospital.'  Which is stupid, because OBVIOUSLY my body takes that as a challenge and is like "Oh really?  Let's see what we can do about that!"  I've got till Sunday to shake everything from the rapid heartbeat to the contagious germs (and, honestly, as long as I've lost the contagious germs, I'm going), so fingers crossed.  Could use a dose of teeny baby magic :)

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On what all the doctors I've seen in the past month (and as I've been cramming them in to make up for all the appointments I cancelled over the summer, that's been quite a few) consider to be the plus side, I've lost about thirty pounds since February.  I guess I should feel more positive about this, except I know that at least half of that is probably attributable to stress, as opposed to the better eating habits (almost no take-out, heart healthy-food, for the most part) I acquired at Grandmother's.  I can't help but feel that worrying yourself to the point of exhaustion, skipping meals (and therefore my meds), or eating three bowls of cereal a day actually aren't the  principles of a balanced diet, but the doctors are so happy I've lost weight that they don't want to hear about those sort of pesky details. 

Still, it has had some positive side-effects: My liver numbers went from somewhere in the 100s to less than fifty; my sugar numbers and Hemoglobin A1C are both at non-diabetes (even non-pre-diabetes) levels again; and I had to buy new bras because the old ones didn't fit.  (I have to buy other stuff too, but I'm poor and the bras are expensive and have to come first.)

  I'm finding the 'no take out' rule harder to handle here at home, where take out is the almost daily norm, plus I'm sick as a dog and can barely manage to eat what somebody puts in front of me most days, but I'm also cutting myself some slack on that because I am freaking exhausted right now and can only deal with so much.  I had a nutritionist appointment last week, and all she kept saying was "keep it up, keep it off."  And I wanted to say, maybe you should be more concerned with my actual health rather than just my weight? but it didn't seem like the right audience for that. Nutrition barely came up at all.  

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I also had an appointment with Zach a week ago, and he kind of shocked me by asking if I thought I needed an anti-depressant.  An anti-depressant is for depression, I thought: I'm not depressed, I'm sad.  I'm mired in (what I consider to be) the reasonable quagmire of grief that comes after losing someone you loved so immensely; I'm overwhelmed with confusion about what comes next after putting my own life (such as it was) on hold to care for someone else for almost 6 months and then watching her die; not to mention being almost swallowed up by toxic family drama and sludge.  "It's only been a month," I said: "It's too soon for me to start thinking about whether or not this could turn into depression."  He looked at me for a minute and then said "It's never too soon, because you have a history ~ I didn't think you needed one either, but I wanted to make sure you were being vigilant about monitoring your feelings - I needed to make sure that you were on alert."

As if I'm never not on alert.

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Promise to be back soon with something not-depressing, even if I have to make it up.  

Hi Again

I know it's been a couple of weeks ~ I'll claim the first two do to just complete exhaustion, and the last two because things are pretty fucked up here, and I'd hoped to come back and be able to say "Thank you so much for your kind thoughts" and then move on to happier things.  But I don't seem to have any happier things, right now.  Which is not just to say that I'm f'ed up (although I am): there's a whole bunch of family shit that's gone down that's beyond messed up, and somewhere between my grief and the situation and everybody else's grief and confusion and all of our individual issues, it feels like my family is basically coming apart at the seams.  Not that those stitches were all that tight two months ago, but they just sort of burst the week of my grandmother's funeral, and I'm at a complete loss as to how to pull them back together again. 

I don't even know where I am or what I'm doing,  at this point, besides making it through the next fucking minute without falling apart.  And I'm not always doing a bang up job on that, to be honest.  I'm back at our house, but it's not home - it really never was, only maybe I was better at pretending before I watched my grandmother die and realized that I need to do more than mark my time here.  I can't seem to talk to anybody without causing a secondhand fight, can't seem to get anybody to listen to me at all, can't seem to connect with the people who've offered to help, even when I want to (and I don't always want to: it seems like too much explaining, mostly).  I feel like exploding just about every minute of every day, or, I feel completely absent and numb - it's one or the other, seems like.  

My dad threw my sister and brother-in-law out of the house, the night before my grandmother's funeral.  Nobody told me what the hell was going on, because, I don't know they thought I would be too upset to notice that people weren't talking to each other?  I don't know.  So I got the lowlights third and fourth hand, then when I tried to talk to people, it was a disaster and didn't make anything any clearer for them or for me. 

My mom left my dad, then came back, but only because she didn't have anywhere else to go, and then, later, because she wouldn't leave my sister and brother-in-law in the house with just him.  This was all in the days immediately after we had just buried my grandmother, so I will admit that I did not have all cylinders going.  I mostly wanted (still want) to curl up in a ball and ignore everything, because it takes so much energy, and I am plum out. 

My dad says the stress of being targeted at work (and, yes, he is being targeted at work) made him snap and... a whole load of bullshit that basically means it's not his fault, but maybe yes, he might admit that he was wrong and 'an asshole' (What he won't cop to, is that this happens All The Damn Time, and nobody feels safe around him/trusts him anymore because he's a bully).  My sister & brother-in-law immediately started looking for a new place, because, hell: who wants to live like that?  They've been thrown out twice in the matter of a year for Doing. Nothing. Wrong.  And let's be clear - they didn't do shit, he just took it out on them.  I told my mother while I was still at Grandmother's house, that I didn't want to be here either... that I would be looking for a new place as soon as I could. {Of course, that was because I forgot that I couldn't place emotional well-being above money, health and other issues without there being major sacrifices of money and health and other things, but I'm still determined to do it}  My mother told him she was leaving too, although it would be better for everybody if HE just left.  He refused/refuses to leave.

So today my sister and brother-in-law are signing a lease for their new place, at the worst possible time for them bc my sister is trying to wean off her meds so that they can get pregnant, and she could really use some backup (which is just when you should be forced to move away from people who can back you up).  She's hurt and mad at my mom for her response to this whole ball of bullshit, which I can't seem to talk to either of them about, because their both freezing me out when it comes to that.  She might even be mad at me, and since she's the one who reads this blog I'm only going to say that I hope she's not, because I feel like I'm on her side, but if she is, I hope she'll tell me so I can try to fix it.

My dad and I had a whole discussion about how mad I am at him the other day, and how it's his fault that SisterJ & B-I-L are moving and that I'm looking for a place, and that Mom is probably looking for a place too, and when my mom asked him what he got out of it he told her that he "has a big heart but doesn't use it."  Which was said once, in the midst of a three hour discussion about how badly he is screwing things up and all the things he is ruining by his behavior, and how hard it's going to be once he realizes how badly he's damaged people he's supposed to care about and how I'm too old for this shit and I'm just not sticking around anymore to watch him bully people (or to be bullied) and how he's being completely selfish, but that's what we all expect him to be at this point, so that we don't even talk to him about our shit anymore and a huge rant about how he's a total hypocrite and totally ignores the people in our family and expects us to be there for him and how he never fucking listens ... anyways.  What he took out of all of that was me saying he had a big heart, which just proves my point about him never listening, and that I really need to get the hell out of here.

Mom and I have talked - or sort of talked - about what she's going to do: she says she's going and she's done, and all of that.  But I don't know: she still seems undecided to me, and I don't know how much of that is the fact that she's changing her meds, and she's still grieving for my grandmother, too, and she seems to be leaning waaay closer to the numb side of things than I am.  Of course, complicating all of that is the fact that she's my PCA, and she does a lot more for me than the hours the state provides for her, which is pretty simple when you're living in the same house, but a hell of a lot more complicated once I find somewhere else to live.

Which doesn't even mention that moving changes everything for me, financially - I have to notify the SSI people, and Mass Health (my insurance) and the PCA program, and everybody does a whole new evaluation and yippee: more energy I don't have.  Plus, I can't afford any place to actually live on what my SSI is currently, so I have to apply for housing stipends, which means that the already complicated task of finding accessible housing (and granted, I can use non-100%accessible bathrooms, which puts me a step above other househunters with disabilities) all that much more complicated, because now I have to look for accessible housing that takes waivers/stipends from the government.  It's so much fun so far!

But here's the thing, as every fucking thing seems to crumble around me (which you could tell only by the fact that I've cursed like five times in this post, when I usually don't ever), I learned a lot about myself this summer, being with Grandmother during those five months.  I learned that I can handle a lot more shit than I thought I could, even if I have to breakdown in tears when nobody is looking.  And even if I shouldn't have to handle any of this, because it's all ridiculous and I don't want to have to deal with it, because it's hard: even though it's ridiculous and hard and stressful and I Don't Want To, I'm going to be able to do it.   I'm going to drag myself and my family through it, and eventually we'll all come out the other side, having met the challenge.

Being a grown-up sure does suck, you guys.  

I'm a little bit behind today because, in addition to other fascinating developments, my mom was admitted to the hospital last night.  It's only a semi-big deal, because she was admitted because of really low potassium levels, after a week and a half of not really eating.  So, dehydration plus, basically.  The plus is: what caused the nausea that made it impossible for her to eat for almost two weeks? Originally, we thought she had the same bug I had, but since mine turned out to be my gallbladder, it's hard to imagine that that would be contagious. 

Then she figured that it was switching from one dose of meds to a larger dose, which is still the leading theory, but because they're not sure, they spent the day ruling things (like her gallbladder!) out, just in case.  And she still there tonight because of another 'just in case': her EKG was slightly abnormal, and the potassium is not as high as they'd like it, so one more night of observation it is. 

It's frightening, even though I know she's in there for a minor issue, to see your mom laying in a hospital bed.  And she was in great spirits - mostly like her normal self, just hooked up to an IV and the oxygen cannula (she's got breathing issues that come from smoking for 35 years, so that's why the oxygen stuff).  It definitely gives you an odd twist to your gut - My mom, while not exceptionally healthy, has managed to not be admitted to the hospital since she delivered her last child - the child who'll be turning twenty six years old come January.  That's a pretty good streak, and there definitely feels like something's wrong to have it broken. 

The thing is, my dad deals with that odd twist of the gut in all the wrong ways: I know that he has some pretty poor coping mechanisms  - we've talked about his issues with alcohol before, for example -  but one of the worst is his ability to catastrophize (I think that's a word, but spell check says no: my psychology background says yes.)   It's just ridiculous: since coming home at nine o'clock last night, I have heard about three 'they were so young' deaths; the time when he was a teenager and his grandmother had a stroke and he came home to an empty apartment; and how the neighbor down the street caught MRSA while he was in the hospital for a routine surgery.  He told me about his friend's sister-in-law who won the lottery - $60 million - eleven months ago, and then dropped dead last week.

And I know - I know  - that he doesn't mean to be annoying, and that his mind is going there because he's worried, but for god's sake - stop putting those images in MY brain!!  And the thing is, he doesn't understand boundaries. So I can say, while he's telling this first story about an 18 year old who got hit by a bus, survived and then was killed by an infection in the hospital, that I don't want to hear about these things right now.  That tragedies are not exactly what I need to be focusing on at this particular moment in time.  That he is stressing me the fuck out.

And he'll stop.  Sometimes in the middle of the story, most of the times he finishes it and then says "Ok, I get ya."

But then 20 minutes later, he's back at my door, armed with a little bit of small talk - how was dinner? is the music too loud?  do you know how to make quiche? - and somehow it gets from there to tale of a 45 year old wife and mother who was smothered in her sleep by a guy she met online.  And when I tell him, more forcefully now, that I need him to shut up and keep that crap to himself, he'll make a serious face, and say things like "Well, it's life; that's life, and you have to remember that." Or when I interrupt him and tell him to knock it off, he'll nod and say "Dad's stupid; he's a guy; what do you want from me?" (I don't even know what that means). 

Worst of all, he's talking about how horrible his life will be without mom, and how miserable he is that she's just not here right now.  Meanwhile, I can't even get into how many issues they have with each other, or how I'm not certain, most of the time, that they even want to exist on the same planet as each other, but whatever: Sure, your relationship is AWESOME, super, Perfect!!!  So there's a bit of denial there, (a bit: ha!) , and then there's the fact that he wants to play Who'll Be Worse Off when my mom dies. 

A) NO - I don't want to talk about that. 
B) It's stupid to be thinking about this right now, when she's in for dehydration, which is something they can easily fix, and yes, it's worrisome, but (I can't type the rest of that sentence about how it's not serious without it feeling jinxy, but pretend I wrote that, ok?)
C) WTF?  Why is this necessary?  ALL OF OUR LIVES WILL BE HORRID WHEN THIS HAPPENS so why are we even asking this question???
D) Why are we asking it right now, when B) and we're already nervous about the damn thing?
E) Why are you an asshole?  Really - why?

Then he started talking about how she's his wife and that relationship is so vital to him, he won't know how to go on.  (I . Can't. Even. )   And she's "just" my mother, and yes, it would be difficult for me, especially me, since I'm so dependent on her, but she's his wife, and that's a whole nother level that I just wouldn't understand.

And then I punched him in the face.

No: Unfortunately I did not.  But I shut him off damn quick, because HELL NO.  At first, while he was spouting off that last bit, he looked at me, sort of waiting for me to be all "Oh, yes, of course: you will have it much worse than me", and then he saw my face, and he stopped talking post haste.  I could see that he wanted to be all explain-y and start justifying what he was saying - because it's a goddamn contest to see who's suffering more? - and I just said "We are Done. Talking. About. This. Now." and he thought twice about whatever it was he was going to say. 

Which is good, because otherwise, I probably would have punched him, and then neither of my hands would have been workable for typing out this post, but that's another story, and tomorrow's another (NaBloPoMo) day.  In the meantime, we could use some positive vibes over here, if you've got any to spare.  Between cancers and gallbladders and hospitalizations and arguments and tension and just getting through the day, I say a few stray happiness vibes are just about due in our neck of the woods.


Good night, bloggy world: Let's all hope tomorrow's a better day. 

 

Need a dustbuster for a cloud that big

As usual, my absence here at the good ole' blog is both really complicated & startlingly easy to explain: I got sicker, in one way or another, and writing fell way down on the to-do list. Which, we all know, is never a good thing for my headspace, but for some reason I can't seem to remember that until it's been weeks since I've been here - or written anything longer than a grocery list - and my brain has retangled itself into the jumbled position that writing isn't important enough, that "it's too hard/I'm too boring/it doesn't even matter." And then it takes me forever to actually make sense of anything that's up there in a cohesive way, and more time passes, and then I start feeling the pressure of that time passing, and my thoughts and emotions get so scattered and confusing, I imagine they swirl around me in a Pigpen-esque cloud.

So here are a few health bulletins I can manage to decipher from all that mess:

• My back is getting better, and considering that next week it will have been 2 months since I fell, I have to say it's about damn time. It's never going to be great, since that's where my sensitivity is usually the worst anyways, but it's starting to get back to my 'normal' for longer periods of time. I may even put a bra on this week, which I am both dreading and resigned to: with girls as big as mine, bra-less in public is just not a good choice - (Not that I haven't done it a few times in the past two months, because, there was no choice, but if I can put it on, then I should - so I don't feel like a huge slob, anyways.)
  
  
• The biggest surprise, and mental blow, that I have been dealing with healthwise, just recently, is the news that I am either pre-diabetic or diabetic. A few months ago, after yet another Infection From Out Of Nowhere, I had to see an emergency gynecologist (who knew there were such things?), and during the course of our appointment, she commented on the fact that sometimes, when a patient is getting a lot of random infections, she's found out that their blood glucose levels have been really high, and maybe we should check for diabetes? I shrugged my compliance, fully expecting that it would be just another test in the unending series of meaningless theories doctors have when it comes to my body. Besides, I know Zack runs a blood glucose test on me every time I'm in his office, and he would have told me if mine was wonky. A week later, the gynecologist calls me back, and she says it came back really high, and that means I'm positive for diabetes. It was actually a Hemoglobin A1c test, which measures your average blood sugar during the past three months, and a good number is less than 5%, a pre-diabetes number is less than 6.5%, and anything over that is considered diabetic.
  
  Mine was an 8.2, and I burst into tears when she told me. Mostly because I never considered it wouldn't be negative, and also because diabetes, well, that's FOREVER and SCARY and HOLY SHIT SOMETHING ELSE THAT IS WRONG WITH ME!!! She seemed a little taken aback that I reacted so intensely, but told me that she would get in touch with my PCP, and she'd go over all the options and treatments and what not.
  
  Here's what she didn't tell me, that Zack later did: Infections can cause really high spikes in blood sugar, and they can even cause diabetes. And, in a nice little cyclic twist, diabetes can cause frequent infections, particularly of the skin. It's also another clue into what the hell is wrong with me, according to him. He got really excited about it, because how had it changed so quickly (my blood numbers), and what did that mean - was it a new symptom of the greater autoimmune disaster he considers my body to be, or was it just a reasonable, if wholy unwanted, result of my size and inactivity and poor eating habits (which I didn't really consider all that poor, until I started having to track them)?
  
  Even more mysterious is how, when I was retested by my PCP a week and a half later, the number had dropped again to 6.4, back into the pre-diabetic range. There were lots of "that shouldn't happen" discussions, because apparently an active infection should not cause your blood sugar to spike so dramatically, and since mine did, what does that mean? They don't know, AND I don't know, but what I do know is that even if I'm only part-time diabetic, meaning only when I have an infection, that's still more than half of the year, so I still have to find a way to manage it. Which right now means doing a lot of MATH during the day, and calculating my carb intake and all that fun stuff, which is better than I expected, but still not a lot of fun - it's MATH, people. (As in "Dear Math, Solve your own problems")
  
  
• I found this out a couple of weeks before I fell, and then the math portion of my brain was out of commission for a while (in addition to any portions of my brain not concerned with pain blocking), and the nutritionist couldn't see me until last week, and then I got another infection - this time just a regular old bronchitis - and now that my brain is turning back on, I'm trying to really focus on what kind of changes I need to be making, and it's getting complicated, fast.
  
  
• And, to end on a more positive note, some time shortly before my sister's wedding, I found out about a local Fibro study, and was accepted to participate. Unfortunately, it's not for some new miracle drug, but instead is using MRI imaging to study brain responses to painful stimuli, and how well certain coping mechanisms, like visualization and deep breathing and all that effect those responses. It's an easy enough study to be in - an MRI when we started, an inflated blood pressure cuff on my leg to create (manageable levels of) pain, lots of talky talk with the lead investigator for a few weeks, and then another MRI to finish it up, to see if anything's changed. The study itself hasn't been hard, but adding in additional doctor's appointments has been a bit of a challenge, but one I am (now that it's almost done with) happy I followed through with. This is the first real study I've been in (I've tried some protocols with my doctors, in conjunction with a study once or twice), and it feels like such a positive step - even though I know it's not going to be that longed for miracle drug, the idea of helping the doctors figure out what the hell is going on is something that makes me feel like I'm not just marking time, but actually doing something. Which is a nice feeling. Of course, I've been delaying that last MRI for weeks now, because it means having to lay flat on my back for 45 minutes or so, which was out of the question. So I'm hoping to finish that up in the next week, so I can move on to something else.

But I'm going to take a break for today. Lots of complicated medical rambling to start off your Sunday morning.... now I have to go and figure out what sort of breakfast I can forage up.

"When I get caught up in the web of feeling, tied up til I'm completely ensared in those slender threads of pain -

that’s when I realize that I’m out of any human reach——-out of the reach of rescue, but not out of harms way. You can’t kiss stuff like this and make it better—–sure, you could kiss it but what difference would that make? Kiss it and make it the same. Carrie Fisher

Thanks for showing up for the September Disability Blog Carnival ~ I had such fun (and a few minutes of trepidation, I won't lie) putting this together, and I hope there's something here that is meaningful to you.
I had the tentative theme of Being Seen, and I think we managed to get some great posts that address just that.

I'm going to start off with a rather sociologically bent contribution,Embodied Ontology Model: A Way Forward, which was suggested by Jon. Although it focuses most specifically on the Deaf community and its needs, I think its ontological perspective is pretty compelling for anybody who's interested in the larger sphere of dis/ability. There's a lot of talk about the pros and cons of the medical vs social model of disability, and the gaps that people can fall into if you're looking at it in an either or type of way:

The desire to belong and to fit into society is a strong human need...Recognition of difference, or ...‘otherness’ is crucial for minority groups in negotiating their place to ‘belong’ in the diverse cultural landscape... Yet there is considerable resistance or social inertia to acceptance of any form of difference within society.

I think there's a lot of interesting stuff here about being seen: wanting to be accepted, to belong, but also to have the recognition of differences, and the making a space for (or, alternatively, isolating) those differences along the way. It's definitely thought provoking.

One of the more interesting aspects of being seen, for those of us with 'invisible' illnesses, is the idea of disclosing: How and why and when do you tell people about this part of yourself? Leslie, at Getting Closer to Myself, discusses disclosing, and her specific hows and whens, in this recent post . She's so honest about the need for connection, and the vulnerability that you can feel in those situations: it's definitely worth a read.

The ever-wonderful Laurie, over at A Chronic Dose, has a provides her thoughts on disclosing as well, both as a teacher and as someone who suffers from chronic illnesses.

Next, I'm including a post from the uber-famous Bloggess, about how it feels (to her) to be living through an RA flare, for a couple of reasons. For one, as a person with FM, I'm all too familiar with the hideousness of flares and her words really resonated with me:

"Life passes. Then comes the depression. The feeling that you’ll never be right again. The fear that these outbreaks will become more familiar, or worse, never go away. You’re so tired from fighting that you start to listen to all the little lies your brain tells you. The ones that say that you’re a drain on your family. The ones that say that it’s all in your head. The ones that say that if you were stronger or better this wouldn’t be happening to you. The ones that say that there’s a reason why your body is trying to kill you, and that you should just stop all the injections and steroids and drugs and therapies."

and made me wish I had someone in my life to tell me "“It might be easier, but it wouldn’t be better.” Secondly, since we're talking about Being Seen, I thought it was important to note that such a prominent blogger was able to shine a spotlight on something that doesn't often get discussed. To me, seeing that there are other people out there who get it? Is vital.

Here's a poem Megan at Mirrored Lens posted for Invisible Illness Awareness week, about wanting your doctor to see you (but I know my eyes plead fix me) that I think many of us can relate to.

thatwordgirl spends some time talking about how she wants to be seen, and how she can make herself be seen differently, in this post about being the It Girl. I envy her her costume geekery: although I've gone so far as to paint the Batgirl insignia on my hands for the trick or treaters, I'm not quite bold enough to go full-out Oracle for Halloween.

This post, by Wheelchair Dancer, about the audience's reaction to the dancing vs. her own perception of it is illuminating. I've seen some of those "weaker choreographed" pieces (not from that troupe specifically, but in my internet travels, certainly), where the dancers in wheelchairs somehow seem to be props for the more 'able bodied' members to show off around. And they're kind of heartbreaking. Because I've also seen the wonderfully choreographed ones (and am now wishing I could find them - YouTube, why aren't you cooperating?), where the chairs are neither props nor handicaps, and all of the dancers dance.


Sharon Wachsler spends some time calling out Esquire Magazine, and a few other organizations, in her post Disabled Writers Need Not Submit:

"Nobody has to say, "I wasn't thinking," because they don't have to think . . . about disability. About us. That's what ableism is about. That's what privilege means: not having to think about what you don't struggle with."

Surely it's hard for people with disabilities to be seen if they can't even access opportunities to tell their stories?

And on the subject of telling stories for PWD, I wanted to point out this post, by s.e. smith, because I'm a total bibliophile, and this discussion of Mental Illness in Young Adult literature added more than one book to my TBR pile. Since books mean so much to me, and there's so many just plain bad - poorly written, stereotypical, not at all feasible, miracle cured! - books out there about people with disabilities (for all age groups: I did my thesis on disability representation in picture books, and there was more than one groan-worthy inclusion, let me tell you), I am so glad when someone gives kudos to authors who are doing it right. As smith says "These characters were carefully researched and sensitively depicted, in a way that resonated for many readers."


Thank you all so much for coming to this edition of the Disability Blog Carnival! Next month's edition will be hosted by Spaz Girl (Cara) at Butterfly Dreams. I know she and Penny will keep us posted.

Then she said, “You know, it’s so funny. What keeps any of those people in that dining room from being like me is just a virus, a thing in my body over which I had no control. Why did I get it and not them? Fate. Circumstance. Luck. But I have a place on the earth, just as they do. I have rights. ... When the shrink talked about how the disease would affect my personality, I talked about how my personality would affect the disease. I didn’t understand why nobody… I kept thinking, ‘I am me! I am still me!’” Her voice began to shake and she closed her eyes, then opened them. “Wipe my tears away and give me a chocolate,” she said." Elizabeth Berg: We Are All Welcome Here

Here are some of the updates I've been promising you

When I picture other people's immune systems, I get this vision of a whole bunch of little blobs, clad in armor, linking arms together in some sort of infinite, unstoppable cellular chain, Red- Rover style, daring anything to try to get through, and laughing as invaders are propelled back time and time again. When I picture my immune system, I get more of the "singular lazy night security guard who fell asleep with his feet on the desk and his cap pulled down over his eyes and is snoring loudly as invaders just stroll past him and through the gate" vibe.
This is all to explain that the hives I've been battling for near to two months now, which were not only really itchy but also quite painful? Are actually shingles - and not even normal shingles, but "atypical shingles" in that they have attached themselves to more than one nerve bundle. That's right, people, I've got the re-Chicken Pox. And I am not pleased about it.
I am not pleased for multiple reasons - the additional pain I've been going through is the major factor there, but also the fact that my @($#head doctor told me not to come in, even though I told her how painful they were since I could hardly move my hip (They are located on my lower back). And she told me just to take some antihistamines and that they would clear up eventually, because they were probably stress related. Which is not so much true: hives might have gone away eventually with some allergy meds, but the shingles won't - it's a virus. So I've been suffering through them for the past couple of weeks, pretty needlessly, since if she had seen them and correctly diagnosed them as shingles, I could have been on this antiviral med weeks ago. (Not that it's helping yet, but still: at least I know it will.)

On a less infuriating topic, what is it that I've been doing for the past 143 days (and counting)? I've been typing at least 750 words a day. I've joined a site called 750 Words , where the premise is simple: You should write everyday. They picked 750 words because it's approximately three pages, which is what some writing book or another suggests as a good amount to get your creativity flowing, but really you can write as much/little as you want. The blank screen keeps a running word tally, and a little green rectangle pops up to tell you when you've hit your 750 word goal, and how long your streak is. It saves all your writing, and archives it so you can search through it later, if you need/want.
One of my favorite parts of the site though, is what you can do with your words after you've written them. The site has all these different analyzers and you can see a daily representation of what you've written - what your mood is, how fast you typed, how many breaks you took, what your overall theme was, what words are repeated the most. And there are little badges for goals met - 5 days, 50 days, 100 days in a row, things like that. It's the kind of statistics and useless rewards that make my little geek heart happy. At present, my word count is 135,918 words. Since July. (...and July was just my 750th word for today, and the little green rectangle appeared, giving me a nice sense of accomplishment!) Which is major, because 100,000+ words is a whole lot of writing and because a lot of things have happened since July that made me think "Oh, I won't get around to writing today."
During the first month I was doing this, my cousin's baby died, and the day of the funeral, I was sitting in my room, staring at nothing, and trying not to think, and the little reminder e-mail came into my mailbox, and I thought "I am so not doing that today." But then I saw that I had a little streak going, and I thought, well, even if I just typed the same word over and over again 750 times, I'd have met my goal. So I started typing, and almost a thousand words later, each accompanied by a multitude of tears, I had an entry that I still can't go back and read. But I had met my goal. I've met my goal sitting in the rehab waiting room while my grandmother had her PT, typing away on my tiny little cell phone keyboard. I've met the goal piggybacking off of someone else's wifi when UJ's internet went out for three days. I've met the goal with strep throat, shingles, and the flu. I've written about nothing, about everything; I've written the first draft of my blog posts (as I am doing today) and used it as a journal for my rambling thoughts. I have, in fact, just typed the a l p h a b e t with each letter separated by a space, over and over again until I made it to 750. Once or twice, on days when my brain is completely not functioning, I've cut and pasted whatever happened to be in the clipboard memory, over and over again until it hit 750. It's obviously not the kind of writing I'm most proud of, but it's something: I've met the goal.
Here's something I don't really talk about a lot - when you're not working, and you're sick, and you're "accomplishments" are more ... subtle than they otherwise would be, it's hard, sometimes not to feel as if you're not really doing anything. I mean, when I was in school, I had work I was doing, and when it was finished, I'd be ready to pull my hair out, but at least it was done. I had finished it, obviously accomplishing something. Same goes with teaching - I would set daily goals, weekly goals, monthly goals, yearly goals for my class, and I would work to meet them. And there would be accountability for those things - If I didn't pass in a paper, I would fail the class; if my class wasn't learning how to recognize letters of the alphabet, then I would definitely hear about it from the lead teacher. And when I met all my goals, I would get some recognition, somehow - external or internal - that I had done the job well.... via grades, or evaluations, or just the feeling of "wow I really accomplished something here." When you're at home all the time, and you have the energy of a gnat and sometimes all you can say you've accomplished during the day is sitting up long enough to take your pills without choking on them, as months turn into years, and you're still as far away from accomplishing the things you want to accomplish in life, it gets harder and harder to feel like you're doing anything. I may know that the things I do - like spending time with the kids, or my mom, or my grandmother - are vital and important, but it doesn't always feel that way. I've heard stay at home mom's talk about this before, and thought - it's almost like that, like nobody sees what you're doing and how important it is. But being sick adds another layer, because sometimes there is nothing important that gets done. Sometimes I'm just barely dragging myself through the day, and especially during those times, it feels like none of the things I wanted to accomplish in my life are even semi-achievable, so why even bother? But writing? That's something that's always been mine, even when I am at my (almost) sickest. It's one of the last things to go before I fall into the deepest kind of flare, the kind where even linking words together is too great of a challenge. So making myself do it, making myself practice doing something I love, even if I waste the exercise completely because I am just not loving it on that particular day, is valuable and rewarding in ways I hadn't expected. I'm enjoying setting a goal for myself, and holding myself accountable for meeting that goal everyday, and if the way the numbers turn green when I finally make my quota gives me a little boost, what's the harm?

Also? The analysis tools are really fun: I am a higher than average adjective user, for example. I tend to be - or to write like - a positive, focused, introvert. I'm more oriented towards "us" than I am towards "me". Compared to the world average, I talk a lot more about health and relationships, but a lot less about sex and swearing (I guess my goody two shoes image is well earned?). Best of all, sometimes I'll write something very angry and rant-ful, and after the little pie chart will be all "70% excited" and I'll think "Huh?" until I realize it's because every ! other ! word ! has ! an ! exclamation point next to it. It's the kind of fun only word nerds can enjoy, but since I think I might know a few of those out here in the blogosphere, I thought I'd tell you about 750, in case you were interested.

And that's my latest update - Shingles: argh! and words, words words.

Some anniversaries I may have forgotten to mention

Well, that was that: October. I can't believe yet another month has come and gone, when I am still stuck somewhere back around April, hoping that the rain will finally stop and spring will bloom. In reality, we're preparing for the cold all over again, and hoping that the heavy snow they are predicting for this season is inaccurate - As usual, I am way, way behind.

I've been so busy here at Grandmother's house that I haven't written about my sick-a-versary, or my blog-a-versary at all, but trust that I have forgotten neither. This is my 16th year of being sicker than I'd like (of course, anybody who's sick at all is, most likely, sicker than they'd like), and the anniversary of that first debilitating, out of nowhere and never gone back to nowhere illness still strikes me hard. Because one day I was fine, and the next day I was not. And I haven't been since. It's hard to remember, even when things are going ok-ish for me health-wise (as they are now), just how different my life became, and how suddenly.

But, like I said, this year's anniversary finds me with no new major downturns in my health, so that is really all I can ask for at this point. I'm grateful for the level of activity I've achieved, which, at certain points in the past I would've never thought I'd attain. Even if they're still significantly below where I'd like to be (say about 70% below where I'd like to be), any progress is good progress, and I think that this past year I've been most surprised by just how badly you can feel - how much pain or exhaustion or stress your body can be feeling - and yet you still get through the days: It seems a lesson I am loathe to continue learning...especially since I am constantly hoping that this - whatever this may be: pain, hours without sleep, post-surgical infections - is as bad as it can possibly get. Since that is apparently never true (it can always be/get worse), I'm glad that I keep meeting the challenges in ways I never would've thought or expected that I could.

But I also have to think of the positive things that have happened in my life over the course of the past 16 years, and know, that if I had changed this one thing - my illnesses and all of their various effects - I would have changed everything else. And so, holding the little people in my life as close to my heart as I do, and knowing how much stronger some of my relationships have grown because I've had the time to devote to them, and thinking of all the ways I wouldn't like to be any different than I am right now, I have to be glad that we can't change our past, since the temptation might have proven too much for me, and where would I be then?

I also missed acknowledging another pretty important anniversary: The end of September marked my fifth anniversary here at Never that Easy. I think, for me, whenever somebody says "It's been X number of years since Y", I always think that it has simultaneously been a much longer time than that and a much shorter time. It certainly feels as if I have been writing here for much longer, because of the people I've met, and because of how much it has come to mean to me. But I can also recall, very clearly, trying to come up with a damn name for the blasted thing that A) didn't sound ridiculous, B) wasn't already taken and C) I could use anonymously, as a pen name. (And even then, I screwed up on B and managed to hijack someone else's blogger name right off the bat: It was not an auspicious beginning, I can tell you that.)

For five years, I've written about most of the things in my life that are important to me - I won't say "all", because there have definitely been a few times I've been either too embarrassed or exhausted to share, and other times when I just kept things to myself - and it's been an overwhelmingly positive experience for me. I haven't made a dime doing it, but never figured on doing so - and, that said, I've still lucked out a couple of times when it came to free goods: way back when, Snapfish gave me some free credits just because I'd said something nice about them on my blog. I've never become part of the "A-list" (or B or C...) blogosphere, but I never meant to do that either: I just hoped that what I had to say would find somebody that it made sense to; somebody who understood enough, or thought it was funny enough, or wanted to know more enough and would stick around to hear me say it.

And in that area, I've more than lucked out - I managed to get people to read almost all of the posts - sometimes it's just been one or two, other times more like a dozen or two, and, once or twice, about 1000. And I've wound up with a wonderful core of people who care, who pay attention to where I am and what is going on in my world, and who let me know that they are out there. That's you, if you're wondering.

I know I wouldn't keep doing this, if you all didn't keep showing up and saying so. I'd keep writing - I always have, I always will - but I wouldn't keep putting little (or gigantic) pieces of myself out into the world like this, hoping. Hoping that somebody else feels the same way about something that I do about something, or feels the opposite way, but still cares enough to argue about it. Hoping that I'm not the only one who gets bothered by some damn annoying thing. Hoping that there are happy things happening even when I can't see them. Hoping that there's more to me than just one part, and that people can appreciate them all.

So thank you for showing up, and for making these past five years a lot less lonely. I'm not planning on going anywhere, for the time being. As a matter of fact, tomorrow will find me participating in my fourth NaBloPoMo, and I am seriously considering doing that meme that's been floating around about the 30 days of truth. It seems like another step in making connections - knowing that I'm being honest with all of you is something I strive for here, even when it hurts - and I'm looking forward to the challenge of it.

Plus? It gives my tired brain a little nudge in the direction of writing something, which is often the hardest hurdle for my exhausted self to climb over.

- A lot of these bullet points were supposed to get their own posts, but I am still at Grandmothers; sick as a dog; and my brain is full of a mushy type substance rather than brain cells. So, as opposed to leaving this un-updated and telling myself that I'll get around to it soon, I'm going to just stick to the bullet points. Enjoy!

- Yesterday morning, after suffering all night with a throat that got more and more sore as the hours passed, I popped out of bed because there was an alarm ringing somewhere in the house. I rolled over to the couch to ask (sleeping) Grandmother what the noise was, only to find that a) I had no voice and b) she didn't have her hearing aids in. Later, when U J got up, I found out that his hearing problems (he gets these weird ear things that sometimes make his hearing less than perfect) had gotten worse over night as well. Please tell me how you explain "a loud alarm! Was ringing! Is there a god damn bell or smoke detector or something????" to people when a)you can't imitate the noise and b) they can't hear it.

- There is no way to talk about the fact that you can't swallow without falling into an immediate "That's what she said" joke. I learned this after I got my tonsils out, but I think I must have forgotten. Now, every time I have to tell the doctor that I can't swallow, I have to bite my tongue.

- Grandmother is doing fine: Now that her only remaining therapist is the PT, whom she likes and who is trying to teach her to use the cane, she sees no real reason to continue using the walker. Even though, you know, she's supposed to be. Since her balance and strength are still off. She does her exercises, she practices with the cane, she says all the right things when the PT asks, but using the actual walker to get from, say the living room to the kitchen? Nah: it's "too short a trip" (even though it is the length of the house). The only time I can get her to agree to take it with her, at this point, is at night when she goes to bed: The PT calls those hours the "danger hours", the times when another fall is most likely to occur, and I think that's why she takes it upstairs with her.

- But still, she doesn't always use it... the den (where my sofabed of discomfort is located) is directly under her bedroom, and I can hear her moving around up there in the middle of the night, going to the bathroom without dragging her "friend" along for the ride.

- The irony in me - the girl who literally crawled from one place to another rather than 'give in' and use a wheelchair - trying to get someone else to use a mobility aid is definitely not lost on me. (Or my mom, who thinks it's pretty amusing, as she was the one having to convince me to use the chair all those years ago, even though I was literally falling down all. the. time.)

- I am very behind on my internet news, but can imagine that this isn't the only place you are going to read the following sentence: If the god damn politicians don't stop with the ridiculous campaign adds, I will not be responsible for my actions. Two additional notes - the amount of mental health ableism in those ads is unbelievable (In Massachusetts, there is one particular ad that flat out calls the opponent "insane" as well as "crazy" and a "kook.:) and, come October 2012, I am not going to watch any amount of unTivo-ed TV. I will not be able to watch what they're going to say about Obama.

- On the positive side, in the past month I've watched all three seasons of Veronica Mars, the (sadly singular) season of Firefly, and a good portion of Buffy the Vampire Slayer online. Of course, my home DVR is full up, but after I buzz through some Daily Shows and Colbert Reports, I should clear up a bunch of space.

- There's a million reasons why I'll be home/here this weekend (see above, see any link regarding health on this entire site, etc), but I still kind of wish I could go to the Rally this weekend. (And yes, I also have issues with the problematic name for the Rally: it was not necessary to call it the "Rally to Restore Sanity" - and therefore continue the stereotype that crazy = illogical and ridiculous and not what all of us "normal" people are like. I take issue with that and think it was a stupid move on their part, for sure.) I still wish I could go.

- Today, Lil Girl ran a race against two invisible girls, an invisible cat and an invisible dog, and she lost 3/5 times. If that isn't funny, I don't know what is.

Breathe in....

It's 11:55 and Grandmother is upstairs in the shower right now. On her own, which I am not entirely comfortable with, but it's not as if I'm going to get her to skip it. (grr. argh) I am more than a little worried, but we'll see how it goes, maybe all will be fine and dandy, all will go well, and there will be no problems (fingers crossed fingers crossed). She promised to leave the door open, and U J is staying upstairs just in case, but I am still wary. (OK, what is about three levels up from wary? Anxious? Nervous? Terrified? I'm that.)

It's not that she's not been doing well - she is doing exceptionally well. She's meeting or exceeding expectations just about across the board (there's the kindergarten teacher in me rearing her head again), but the two true deficits she's still having are in balance and strength. Those are deficits I know something about, unfortunately. Which means that while U J seems to be perfectly fine - not worried exactly, but not nonchalant either - about this whole showering situation, I'm a bit more skeptical. Because showers are my downfall, people, as you well know if you read this site. And because if you combine stubbornness and an inability to just ask for the help you need (particularly if you need that help while naked) with a loss of balance and strength control, then problems are more than likely. They might even be inevitable, in the longer run.

Hopefully not, but these are the times when I am most frustrated by my disability. The times when my illnesses are not just illness but clearly dis - abilities. Because I am physically unable to climb up those stairs to help her shower in the first place, so we can't avoid the situation in its entirety. Because I am physically unable to climb those stairs and wait around outside in case she needs my help (which she'd be more likely to ask for than U J's, since I've already seen her naked about a million times by now) with something small, thereby avoiding larger problems. Because I am physically unable to rush up the stairs if she hollers or slips or falls: If I started crawling my way up right this minute (at 12:05), it would take me at least 20 minutes to get up there, and when I got up there, I would be too wiped out to do anything else - I'd need at least an hour's worth of recuperation (by which I mean lying on the cold hard floor, being as still as possible) until my pulse slowed down enough or my blood pressure came back up enough or my muscles would cooperate enough for me to crawl my way to the bathroom floor. So, if she should need my help, it'd be a good hour before she'd get it, just physically. And yes, of course, in reality, if it were just she and I in the house and she needed help, I would not attempt to climb the stairs, I would immediately call 9-1-1, because they'd be able to get to her much faster than I could, but that really just proves my point even more: I would be one flight of stairs away from her, and the EMTs four blocks away could get to her more easily than I could.

So those are the times when my disabilities are shown as clear disabilities, and the times that they are most frustrating.

Alternatively, of course, is the notion that, if I were not sick, I would probably be employed, and if I were employed, I would definitely not have been able to be staying here this past month, so while I would, in that instance, be physically able to climb the stairs, I would (most likely) not be around to do the climbing or even know the climbing was necessary. But this post is not so much about playing "if only, if only".

I'm just trying to explain the very real frustration I'm experiencing right now: Not a "but what if I wasn't" type of thing, more of an example of "well, this is my reality." (If that makes sense)

And now it's 12:16, and the water has long since shut off, and Grandmother is coming down the stairs, cleaned and dressed and smiling. Safe and sound, happily. She says the entire operation went well, and that she remembered all the instructions the Occupational Therapist had given her (about sliding in and out on the shower chair instead of attempting to climb over the edge of the tub, or having U J set up the shower head and chair before she gets in). My worrying was thankfully unnecessary, and I'm glad I was able to distract myself by talking to all of you.

:exhale:

I be back

Hey everybody: I know it's been a little while, but have no fear, I have not (as Crazed Mom has worried about) been a part of the blog-apocalypse or anything like that. Nope, it's just regular, end of summer, everybody has their vacation at one time, trying to cram experiences into the last few weeks before school starts mayhem.

I told y'all we'd be having some visitors, and boy howdy*, did we have visitors. My sister and her boys came for about a week, and Lil Girl and her brother decided to stay with us most of that week too, because their cousins were here. Which is awesome and wonderful, and I'm so happy that they (mostly) get along because there is such a wide range of ages (8 months to 14 years), and that could be bad news, but (mostly) works for them. One of my most cherished memories of my childhood summers is the week in August that my Virginia cousins would visit... I can remember crying every time they left and almost holding my breath every summer till it was time for them to come back. I'm so glad that my niece and nephews can have the same kind of connection (and, since Sister S's boys only live in New Hampshire, get to have more than one visit a year).

But that's not to say that it didn't take a lot out of me, and really made me realize that I am still - three months post-op - definitely still in a recovery phase. I just didn't have (what passes for) my normal level of stamina or strength, and, by the middle of the week, I was getting lots of concerned questions from both Sister S and Oldest Nephew. They kept asking if I was mad, which is the question I tend to get asked a lot if the pain is showing up on my face. I had to keep reassuring them that I wasn't mad (because I wasn't), just really, really sore. Since I have had 15 years of practice in covering up how badly I am feeling (particularly around the kids), it has to be pretty horrible for that much to be leaking out. I also don't necessarily think it was bad for it to be showing - Sister S, and her oldest boy, to some extent - still don't really "get" the whole chronic illness thing, mostly because they only briefly lived with me while I was ill. They don't quite understand how bad it can get, because I mostly hide it when they are here, so as not to put a damper on the visit. Which is possible on a weekend visit, or a day trip, but for a whole week? Never gonna happen. Eventually it catches up with me, and in this case, it was definitely sooner rather than later.

While they were here, we managed to get most of the whole immediate family crew together (minus Sister K who went to Montana with her boyfriend) for a little trek to a local old timey amusement park. It's a place that holds a lot of memories for most of us, as Nana (5th grade teacher extraordinaire) used to take her classes there on a field trip every year. She and the other chaperones would bring beach chairs and park under a giant willow tree, while the kids ran across the parking lot to the arcade with the warnings of "Absolutely no one goes to the beach!" and "If you don't come when I blow this whistle, we leave without you and you can explain to your parents why you didn't make the bus" ringing in their ears.

This trip we all had a great time, we took lots of pictures, and I will talk about it some more in a later picture filled post. But it was a really special day.

Added to that, I got a visit from College Roommate/ Best Friend, and her two little girls, who I haven't seen since before Christmas, because of various illnesses (on my part) and busy social calendars (on hers). We had a very nice visit, and definitely won't go so long this time in between. And then one of those fore mentioned Virginia cousins - who now lives in Maine - came down with her mom, husband and little boy and we had lunch together at Grandmother's house, with her kids and the kids my heart says are part mine running around in the yard while we - the grownups!?! - watched from the porch. It was pretty awesome, although I still really, really don't feel like a grownup.

So that's where I've been: visiting with sisters and brothers and nieces and nephews and best friends and their kids and Virginia cousins that now live in Maine, and taking field trips down memory lane. As exhausting, punishing and painful as it has been physically, it was definitely worth it. Although I am still recuperating - from both the summer and the stupid surgery - I'm glad that we got a chance to get everybody together, and that so many people I've been missing managed to make their way to me this summer.

Plus, now I have a ton of photos to edit, and some of them I actually love, so it's bonuses all around.

*I have no idea where the Southern accent came from: I apologize for the "boy howdy."

Well, so far,

this operation has not been as big a success in the whole "preventing multiple infections" genre as I might have hoped. I'm on my way back from my second infection since the surgeries, all though I will say that (so far, knock wood, cross fingers) the duration of this infection is hopefully of an atypically (for me) short duration. That is the hope anyways.

I've been pissed off because I told Lil Girl's parents to keep her at home last week when she was sick (which I hate to do) and I specifically did not go to my cousin's wedding this weekend because I was trying to take the safe road and keep myself away from germs and rest up and recover. And then, by Monday morning, I was sick as a dog. Again. So it really didn't matter that I didn't do the things I wanted to do; I got sick anyways. Realistically, I know that there wasn't a connection, but still: pissed.

I am recovering, though: my voice was coming back before I coughed it away this week, and my face wasn't as painful as it had been (before it took on it's new infection throbbing). One strangely unanticipated side effect from my septum repair is this odd tingling in my front teeth/roof of my mouth. The doc says this is because the nerve that runs there begins at the base of my nose, and I say it would've been nice if he had mentioned that before the surgery, but since it's supposed to go away, I'll just keep spraying Chloraseptic on it and drooling like I just got "woot canal".

I can't really judge how healed I might be, what with the new issues, but I'm working through a course of antibiotics (and got back from yet another horrid visit with the surgeon), so hopefully, by this time next week I'll be doing better and will be able to say "I'm healing" without all the caveats. Thanks for your support, in the meantime.

I do have a lot of things I want to do this summer, so keep fingers crossed that this is the END of summer infections for me.

"I wanted to run away that day. But you can't run away from your own feet."*

One of the things I've always said about my particular battle with chronic illness is that - for me - it's like having all the downsides of being pregnant, without any of the benefits. When you talk to women about some of the worst side effects they encountered during their pregnancies, you hear a lot of talk about exhaustion (check) or their new aches and pains (check plus). I've known pregnant ladies who found that they were sensitive to odors (check plus), others whose favorite foods were no longer edible (check). There's the nausea (check), the heartburn (check), the weight gain (check), the loss of balance (check), the increase in number or intensity of headaches (check), the insomnia (check plus) and the resulting "mommy brain" (what I like to call brain fog) . I've got all those symptoms (plus bonus symptoms like a ridiculous lack of immune system & muscles weaker than wet noodles), only I don't get to have any of the fun that goes into making a baby or the fabulous new little person to care for afterwords.

For the past little while, I have been in a mood and it hasn't been an exceptionally positive one. For every good thing I do or have, it seems 12 not-so-good things come creeping out of nowhere. For every day I get to give Lil Girl a bath and put her hair in pigtails, I've spent 7 days coughing until there's nothing left to cough up. For every phone call with a friend, I get 5 runarounds with the insurance company (Dear Mass Health: Could you please try to not kill me this year? I'd appreciate it). For every "balentines" cake we make that crumbles into pieces thereby forcing us to eat it with our fingers, I've got 4 straight weeks of not leaving the house except to see a doctor.

I have spent zero days this year without a sinus infection. There were days when it was lessened and I was functioning better, and days when it was worse and I was basically a zombie, but for all 48 days of 2010 I have had a sinus infection. Which is no worse than any other year, really, because I've been sick for at least the past 5594 days, but 48 days without breathing correctly has the power to mess with your mind, let me tell you.


So there's my mood: Complete with grouchiness, confusion and uber-sensitivity. I feel like everything I say is in another language, that I can't make people understand me. I have this sense of (as my sister would say) "Too. Much. Pressure!" that there's a lot of questions and expectations and wants that people are bombarding me with, and I just don't have the energy to deal with them.
I know I'm in trouble when I stop writing. When I stop coming by here to let you all know how things are going, I tend to let myself wallow more. I know I'm in trouble when I stop picking up my camera - when I let the frustration that the damn batteries only last 16 minutes and I have to buy a new damn camera keep me from snapping pictures of sleepovers and Rock Band marathons. I know I'm in trouble when I avoid e-mails and calling people back, because I don't want to have to explain "how I am doing" to anybody, because there's no good answer. I'm doing: but barely. I'm functioning and having a good day or two along the way, but for the most part I just feel stuck.

Stuck and struck by how little of my life I am able to control. By how little my plans count for anything. By how little compassion and empathy there seems to be in my world, in the world.


Even though I can see all of the positives in my life - which I know I have many of - I'm at a point right now where it's getting hard to hold on to them through everything else. It's like there are rare rainbows and even a unicorn or two, but for the most part I'm slogging through a swamp.

And as I am typing this all out, I want to say very clearly that, while I may be depressed (lowercase d), I am also not Depressed (capital D), because I have been Depressed and I know what that feels like. For me, it isn't being unable to hold on to the happiness that's around me, it's being completely unaware that those good things exist in my life... it's being surrounded by positives and being unable to see/feel/experience them. Right now I can still see them, and I can still enjoy them. I probably embrace them even more so than I would if I weren't in this mood, because I crave them so much.

I think that's a good label for the mood I've been in, for what I've been doing: I'm not upset, I'm not depressed or lonely or sad or difficult: I'm craving. I'm craving peace and order and simplicity. I'm craving opportunities to leave the house that don't include someone sticking me with sharp implements. I'm craving time with the people I love that doesn't include me being simultaneously hurt. I'm craving baking that doesn't make me want to throw up & hugs that don't make me want to cry. I'm craving understanding - the kind that comes when you don't have to explain yourself over and over and over again.

And all I can think is how much simpler it would be - and how much happier I would be - if I could just crave ice cream and pickles instead.

*Cloudy with a Chance of Meatballs

Randomosity, of which I am good at

(Part of me is saying "I don't want this blog to turn into a bunch of whiny posts about how sick I am, especially when it's not really that sick, it's just average sick (for me) and who cares about that?" and another part of me is saying "Well, you've got to write something and what the hell else do you have to talk about?" The parts of me are almost never in agreement about anything, so I find it's probably the best choice to let them bicker and try to move on. In that spirit:)

Here's a very brief bit of an update -

I have been sinus infection sick for over a month now (making this the 14th straight month in a row that I have had either a throat or sinus infection), and, after a consult with yet another ENT, they (once again) think I should have some surgery. Sinus repaired, cyst removed, tonsils out, deviated septum fixed. The surgery is still a ?, for a few reasons, but it seems more and more likely as time moves on. I have a lot of reservations, (including how do I take my very necessary meds after a tonsilectomy; how are we going to keep my BP stabilized during the surgery; which doesn't even mention the fact that "10 days" of recovery time for normal people usually winds up being an exponent of that number for me), but I'm working through them while I wait for the next step, which is a CAT scan. I will keep you posted: when I know more, you'll know more.

In other news, I am searching for a new laptop, as this one (at only 5 years old) has been gradually making things more and more difficult for me. This past week, it's decided that it doesn't want to recognize the back-up hard drive unless it's plugged into a certain USB port. There are three USB ports, and every time I turn the thing on, it requires that I change it to a different one. This is marginally frustrating, but when you combine it with the semi-pixelated screen (from when Humpty and I took a tumble nearly two years ago), the fact that the power cord only works if it is turned at a 35 degree angle, and the fact that I have now spent more in repairing the damn thing than I would on buying a new computer, I have decided that I am going to start searching for a replacement in earnest.

Since I don't like A) Spending Money I Don't Have, B) Change, and C)Buying Things I don't Know A Lot About, you might guess that I am not entirely psyched about this proposition. You would be correct. Any recommendations would be greatly appreciated - what do you all use, and how do you like it?

My favorite part about my current HP is that it came with a controller, so I can listen to music at night and not have to move, but that's not a requirement in the new computer, since I could always just use this guy as a very big IPOD.

I also know that

• it is school vacation week here, so we should have the kiddos at some point, probably for sleepovers;
  
• my dad is back at work after a week's vacation and I definitely have to be better by the time he retires because (Him + Free Time) + (Me + Not Being Able to Do Anything + Extreme Sensitivity to All Smells, Especially Cooking Oil) = Bad News;
• SisterS is supposed to come down this weekend with BabyB and Oldest Nephew (which reminds me that I need new blog names for Youngest Nephew and BabyB) which is pretty awesome; and
• we're supposed to have some sort of engagment party/dinner thing for SisterCh and her fiance on Sunday, which I would be more excited about if his family wasn't coming, because thing I really know about his family is that the last time they were over, his mother wanted to take a bath in our bathtub. Really. It was very awkward.

So that's my news, and I also hope to be back before too long with a picture post, see if I can't scrabble a Best Shot for this Monday, get back into the swing of things again.

The end of the world?

It has not been my Best Week Ever.

Of course, it also has not been my Worst Week Ever, so there's always that.

I have acquired yet another sinus infection, which came as a surprise to even me, since I was so busy recovering from Monday's poking and prodding ("Oh look: she's super hyper-reflexive today, let's see if she keeps doing that if we keep hitting with this little hammer!") by the doctors that I didn't even recognize all the build up to the infection until my fever was raging and I was (TMI Upcoming: skip if eating) gagging on the post-nasal drip. By Wednesday, I was pretty sure that my sinus cavities had been packed as fully as they possibly could be, and by yesterday, I was seriously wondering why we ever stopped drilling holes in people's heads as a cure for things. I'm sure it would've cured what ailed me, at any rate.

Today is a slightly different story - less of the throwing up, more of the actually being able to inhale without crying, which is all for the better, in my opinion. Aside from completely missing the trash barrel 9.8 out of 10 times I threw a tissue in that general direction, I have also been reading a lot this week. The books have all been some of my past favorites, comfort reads from my personal library, which is totally my modus operandi when I'm sick: Old friends are better friends when it hurts to open your eyes and you have to roll over every 4 minutes so that whatever has infiltrated your head can slowly drip into the other side of your face. (And that's the answer I've been looking for, the one I should give when clueless people ask me why I keep all these books - "It's because something needs to keep my mind off of the fact that my brain is leaking out of my nose, ears and eyeballs, and I don't see you volunteering!")

Anyways, halfway through my second Nora Roberts trilogy yesterday, I realized that the books I was reading all seemed to have something in common: Everything I was reading had to do with the end of the world... or better yet, preventing the end of the world. Demons, vampires, gods, goddesses, ancient alien beings, epic warfare and battles filled with love and loss, blood and sacrifice. And the stories of people who are called upon to fight, even knowing that they're outnumbered, that the enemy is probably a lot stronger than them, that they might lose everything and everyone they care about.

Nothing like the end of the world to make the fact that 2/3 of the areas you use for breathing no longer function correctly seem like a minor detail.

In case you're interested, I started with her Circle trilogy, read Part I of Stephen King's It (if not my most favorite book ever, it's definitely in the top 3), and then worked my way through Nora's Blood Brothers trilogy (which is very reminiscent, at least to me, of It). I was going to read the fabulous post-apocalyptic Life as we knew it by Susan Beth Pfieffer next, but I'm still waiting for a copy of the sequel, so I think I'll see if I can't find some other sort of literary mayhem that appeals to me.

It will come as no surprise

to anybody that I am sick.

I was going to say "really, really sick", but I think I could knock it down to just one "really" at this point, because I am fever free(ish), and that is usually a turning point for me.

Just like last year, I went and got myself sick right after Christmas. Actually, this year, it's been a little bit different for a few reasons (like the fact that I am actually writing this while it is still December, rather than the middle of January), but basically, it went like this:

1. I realized I was getting sick as we were going through the frenzy of last week's Christmas preparations, and I started taking my back up antibiotics as soon as that happened.
   
2. Unfortunately, I still had a million and a half cookies to bake, and a sick Lil Girl to entertain, and Mum who was sick (and had left all her Xmas shopping til the last minute as usual), and therefore I had to do things like manage to get my own food and essentials like that, and so I couldn't really just rest and try to head things off as much as I might like to have.
3. On Christmas, I wore myself out even more. Mostly having fun, although there was some managing of things that I really should've just let go mixed in there too. But still, mostly having fun.
   
4. By dessert time on Christmas day, my throat was scratchy, my head was stuffy, and I knew I was getting a fever. I started coughing, but everybody was coughing, so no big deal, right?
5. Wrong. Big deal. By three in the morning, after everyone has finally given up on the Beatles Band Hero, and either gone home or gone to bed, I knew I was in serious trouble. I was having trouble breathing, my throat was so swollen; I could barely move because of the damn fever; and Imight be wrong, but I think someone must have transformed my room into a sauna as a surprise Christmas present for me.
   
6. Saturday and Sunday disappeared into a fevered fog. I have vague recollections of chills so violent I required four blankets (which all hurt: thanks FM!) & two heating pads, and the fact that there seemed to be an endless cycle of having to drink, having to get up to pee, and crying because it hurt so bad. I gave up on watching movies, and spent a lot of time staring into the window lights for no damn reason except that I couldn't think enough to realize that I knew how to shut them off.
   
7. Monday morning, the fever broke and has been mostly gone since then, which means I was able to rewatch (and actually understand this time) Harry Potter and The Half Blood Prince (awesome), and the antibiotics finally start to kick in so that I was finally able to swallow something other than soup.
8. "Eating" nothing but soup for three days does not agree with my stomach. My stomach decided to make its disagreement well known.
   
9. Yesterday, I finally got in the shower, and Mum changed my disgusting sheets, and after that I felt vaguely human again. Brain power started slowly coming back, and I remembered things I am supposed to stay connected to like my sister's mother-in-law's surgery and my cousin's ultrasound results.
   
10. We finally get to today, where I feel halfway decent (for me), and have gone from sounding like a cigar-smoking Darth Vadar to just a cigar-smoking frog. The hacking cough is lighter and less croup-y, and my tonsils are back on their own sides of my throat.
    

While this is hopeful, and I'm glad the antibiotics are really working this time, I would really just like to not catch every damn thing. Next year, I'm making the cookie dough in August, and freezing it all. And I'm going to start shopping now, because I can not let myself get so run down. And it pisses me off that 15 years into this damn disease, I still haven't managed to set - and keep - the limits that I need to in order to help myself stay healthy. Which isn't to say that I wouldn't have caught it anyways - Lil Girl, Mum, (not) Youngest Nephew, & his dad are all/have all been sick either this week or last week, so it's not just me of the ruined immune system, but I know that there are ways to protect myself more, and I hate that I let my guard down in that area when things get stressed. Because these damn infections are starting to get more and more serious, and I am not going back to the hospital if I can help it at all.

So, now onto step 11: rest, rest, Guitar Hero, rest, eat real food, watch crappy TV, more rest. Join me, why don't you?

Pie for breakfast is healthy, right?

So, Thanksgiving was fabulous here (Until I sort-of passed out, while trying not to pass out, and thought I was being really discreet and all, but everybody started getting up and leaving. Oops.) ~ I hope it was fabulous for all of you too (minus the passing out part).

I am recuperating slowly, which means leaving bed only for necessities, and checking e-mail only for short periods of time that my fever is down and my brain is functioning, but today is so much better than yesterday that I just wanted to check in and say that I hope you are all having a great, restful, thankful weekend.

Be back manana (in one form or another).

Be As Well As Possible.

15 years and counting...

I turned 30 earlier this year, and, in the months leading up to that day, I was getting a whole lot of "Is turning thirty going to bother you?" "Do you think you're going to freak out?" "Does being 30 make you feel OLD?" type questions. I didn't think 30 was anything to freak out over, and told people so, even if I don't think of the number as having any actual relation to my life. (If you're going by how I feel I might as well be 97 right now, physically, and about 12, on a good day, emotionally.) But there is something about turning thirty that I knew was going to really mess me up, and that is that it marks a different sort of milestone for me: I have now been sick longer than I have been ill.

The last day I remember being well was October 20, 1994: Fifteen years ago. I have now been living with chronic illness for exactly 1/2 of my life. And that is a heavy, heavy thing.

It shouldn't be, probably: It's certainly no surprise, at this point, to realize that my illnesses aren't going anywhere. For the first few months, and even the first couple of years, there was the constant thought that "I could wake up better tomorrow" just as suddenly as I had woken up devastatingly ill that first morning. As time went by, and test after test would come back screwed up (but not treatable) and doctor after doctor stopped treating anything except the active infections (rather than the underlying whatever-the-hell-is-causing-this), it got harder and harder to believe that one day I'd just wake up better. One thing snowballed into another, relapse ran into relapse, sleep problems followed pain problems followed breathing problems followed energy problems, and the cycle just seemed inescapable. (It still seems pretty inescapable.)

And to know that there is no end in sight, that these 15 years are probably just the beginning of a really long haul (if I am lucky), that's a hard pill to swallow as well.

But here's another thing I've been thinking about: There were also numerous times where I figured, "I'm just going to die from this... I can't survive this time." (I still have those times, too.) And if I look at it that way, if I look at the past fifteen years and think - "Well, I've survived this for half my life. I've coped as best I could, and survived a lot of things I didn't think it was possible to survive. And I am still here" - then it's not quite as hard to swallow, I think. Seeing myself as a survivor, rather than a sufferer is one of the many distinctions about my identity I have had to make over the years, and it's one of the hardest to hold on to.

Here's the thing, I'm a woman with a disability: I have now been disabled half my life, and I am so proud of the ways in which I have met the challenges of my disability, in the ways I've cobbled together an identity from the bits and pieces of myself that were left over and the new ones I discovered along the way. In that way, I figure that I am no different from anybody else: Everyone - disabled or temporarily able bodied - spends those 15 years of their life (from 15 -30) trying to figure out who they are, who they want to be, and how to live in a way that is best for them.

Life experiences change who we are, and being ill has certainly changed who I am - and not in a completely negative way. But still, when October comes, I remember the part of me that I lost - the part of me died 15 years ago: the dancer who could be touched without crying, who had energy to spare after walking 5 miles, who thought she was going to be a million things, but none of them included this - and so I'm still mourning that person that I could've been, that I maybe should have been, but, at the same time I'm also incredibly proud of the woman I am turning out to be. Does this make sense to anybody but me?

Basically, as I came up to this Sick-a-versary, I was more conflicted than I've been in years past - it feels like both a solemn occasion, because of all that I've lost, and a cause for celebration, because I am Still. Here.

(I've been working on this post for a week, and it still doesn't feel like it explains exactly how I am feeling, but I suppose this is the closest I am going to get, for now. I hope it makes sense to some of you.)