Wednesday, July 30, 2008

Oh Lordy,

am I tired and sore.

I'm dragging this week, people: the tonsils that ate my throat are back, trying to see which of them can be bigger. And of course, there's the tiny matter of a slight fever, and, you know... it's hot here, right now, so I'm hot and sweaty and sticky. And, I suppose, slightly crabby... because that sounded a lot like whining to me. Which I don't like, sooo MOVING ON.

So yesterday (or the day before, I guess, because it's 3 in the morning), I got my fantastic Color Me Happy Swaparooni gift, but I haven't taken a picture of them yet, and now it's very very dark and you wouldn't be able to see the pretty little stitches in my pillowcase... The theme this month was Comfort, so getting a book and a pillowcase hit the mark exactly: The SmockLady did a great job, and she sent me what seems to be a great, relaxing book. This was my first swap, and I was soo excited. I hope she likes her package: when she gets it, I'll post what I sent, so everybody can see... I had SUCH fun picking out little pieces for her package, and reading her blog, getting to know her and her family. You should pop over, if you get a chance, congratulate her on their expanding family. You all know how I love big families, so I think Ms. Smock is one lucky lady!

I did reconsider, more than once, joining the group, but only because I hardly ever leave the house, so planning specific trips just to go shopping is not in the normal realm of things around here. But it did me good to journey out of the familiar - and to get out of the house in a non-doctor/hospital/test related way. I've paid up to be a part of the next 4 Swaps, so I'm going to stay in it, I think... It's nice to have something different to look forward to.

People who aren't sick say things like "Don't let your illness define you" all the time, and it's something that makes me want to punch them in the face, because... well, everything that's important in your life defines you, and being sick is pretty damn important. But it is nice to have something separate from that, something that's got nothing to do with pain or pills or my sisters or my parents... just something that's mine.

It's why this blog is so important to me (and why I keep it so anonymous): because it's hard to have anything that's just your own, and I need to protect those things when and where I can find them. So I'm glad to be a Swaparooni member, and will be doubly glad when The SmockLady let's me know that her package arrived safe and sound.

And I'll try to get some pictures up tomorrow... or this morning, if I feel like it when the sun finally gets up.

Happy Wednesday all!

Friday, July 25, 2008

The Good, The Bad, and the WTF (in reverse order)

So I've got an appointment with Zach that I have to leave for in about 20 minutes, and I've been going over the copy of my medical records they sent to me as I search for a primary care doctor that accepts my health insurance. (He's a specialist; it's a long story.)

I spent about 3 hours going over the last 3 years in blood tests, trying to nail down any patterns I saw, trying to see if we'd addressed any of those patterns, trying to figure out where the hell all the other reports and tests I've had were. (I get the impression this is just a summary of my records, cuz there's a bunch of stuff missing. And the summary cost them $8 to mail.)

I'm full of questions for this appointment...The WTF: I've had abnormally high platelet counts and consistently low MCHC (apparently "Hemoglobulin per red blood cell count") results since I first started seeing him. Have we addressed this? Ever? And what does it mean, exactly to my symptomology?

My liver issue, which I always thought was being controlled, keeps popping up in the test results - high ALT, high AST, hig GGT: Should I be doing more than I am to help this?

And how, in the name of all that is holy did my Bruceillosis Titer go from 11 (which is the highest it can be and still be considered normal) to 12, to 17!?! In less than a year?

Did anybody ever hear that saying that you shouldn't listen at doors because you might hear something you didn't want to? Yeah, well that brings us to the Bad: In his latest dated report, Zach calls me "Significantly obese." I was literally shocked to read that. I know I'm fat. I know I'm about 35 lbs over the weight that I should/want to be at... but to read that as part of my clinical notes was, for whatever reason, shocking.

And it kinda pisses me off a bit too, because I've had doctors who assume that my weight has a lot to do with my exhaustion and pain and inability to walk... and certainly, it's a contributing factor now, but I weighed 122 when I first got sick, I was an athlete - dancer - and I even walked while I was reading. I wasn't overweight (though I always thought I was), and it certainly had shit to do with me being sick. Being sick, on the otherhand? is a direct contributing factor to my weight: Can't move without it hurting (can't exist without it hurting) & exercise makes me pass out... so fabulous! Should be wicked easy to lose weight in those circumstances.

Actually, I lost a ton of weight when I first got sick - when my appetite died, the weight came pouring off of me. There was a lot of talk about an eating disorder, but it was simply that I could not make myself eat food when I constantly felt like puking. It was never in the dangerous category, thankfully, but everybody - my parents and doctors, especially - were worried if not downright scared. About a year into it, something changed, and all of the sudden I had a craving: the only thing I had an appetite for was salt. SALTsaltsaltsaltsalt. It was as if I couldn't exist without it (and turns out, with my low BP, I probably couldn't have).... so they kept telling me to add more salt, to eat even if I felt like throwing up during and after... and it got to the point where I would force myself to eat, as fast as possible to get it overwith without puking midmeal. (nice... hope you aren't eating!)

And my appetite still hasn't returned, but years of not being very active and eating without really caring what I was eating, and yeah: I'm overweight. It's not the way I want to be, and I know there are changes I can - and should - make when it comes to food, but I've got reasons (and probably excuses) about why that hasn't happened yet.

Either way, to see it in print? Shocking - 'significantly obese'? Really? Damn.

On the otherhand, in the Good file, Zach lays it out in black and white, over and over again: "I do not consider her sypmtoms to be psychosomatic, as a previous doctor has suggested" Damn right! "Patient is imprisoned by her symptoms, and desperately needs answers." Check! "Patient is frustrated by lack of progress, and I do not blame her." Hello! "Patient is a kind, caring young woman, and her illness is stealing years off her life. We're going to work with her to help her best cope with her symptoms." Is there any wonder I like him so much?

Now.. off I go. Again.

Monday, July 21, 2008

One of the bright spots

It's nice that a new week is starting, so to get it off on the right foot, I'm going to put up a Best Shot, and then try to check out everybody else's.

Here's Lil Girl, 'asleeping'.

She hasn't quite figured out yet that I can tell she's not really asleep because she's grinning &/or laughing out loud, but that just makes it more fun all around.

Sunday, July 20, 2008

One less

There are days when I feel like this is all too much for one person, that I could bear things, if there was just one less thing. Just one less issue, and my life would be manageable.

I could handle the being in pain and being exhausted and picking up every single germ, if I didn't also have to handle the smells or the migraines or the inability to breathe.

I could handle the brother with an addiction, the other bio families of SisterK & SisterS, and SisterJ's horrifying depression if I didn't also have to live in the same house as the PUS and know that their karma hasn't caught back up with them yet.

I could handle having to move, having to find a place to move to, having to make concessions on the little things, if I didn't also have to fight the PUS in court in order to make it happen.

I could handle the newest rashes, the inability to go outside when the sun is shining without wanting to cry, the past three years without a single night's uninterrupted sleep, if I could just eat food without feeling like I had to throw up.

I could handle AuntieE being in a coma, Mum's knee suddenly blowing out on her, SisterCh's new mega-hives, if I didn't have to handle Nana having cancer, Nana being so sick, Nana dying.

It always feels like if I just had ONE LESS worry - If I could focus on Mom's grief instead of my own, or when to get over to Grandmother's house instead of the stupid ants that are marching across the floor, then my life would be ok. Then I would feel like I had some control over what was going on.

But it's never one less, in my experience, and almost always one more.

And the past few days have been full of 'more's - More little annoyances, more bad news, more things that need to be fixed but you can't see a way to fix them.

SisterJ's depression is crushing her again, and she's hiding from us because it's too hard even to talk. She's getting help, has been getting treatment all along, but a new medication change seems to be making things worse. On the phone, her voice is that scary void again, and I know she's feeling nothing so much as not wanting to be here, to not have to deal.

It's a frightening thing to recognize, and to feel a small echo of it in your own heart. I'm not suffering from depression right now, but I have in the past, and it's been the kind of day, week, month, and year where you can see how shockingly simple it is to go from sad and grieving and worried and weary to completely depressed. I'm being vigilant, I promise, but today is one of those days where all of my burdens seem heavier than usual, when I have to escape into a good book or stare at stupid movies all day because being me is just too much.

I don't feel hopeless or useless or as if tomorrow might not bring something worthwhile, which were all the things I felt when I was depressed, but today I feel overwhelmed and scared and tired. Just tired of having to cope. Just wishing that things were just the tiniest bit easier.

Just to have one less.

Saturday, July 19, 2008

So much to say...

Hi there ~ Even though I'm Blogging Without Guilt, I sometimes still feel badly when too much time has gone by. There's only about a million times during the day (and, therefore about 7 million during the week) where I think of something I'd like to share with you all. My biggest hurdles are time and energy: I often have to spend the time I have trying to re coop the energy I don't. So blogging gets the short stick, and that's probably why I have about 6 regular readers.

But the thing is? I really like those readers, and don't want any of you to think that I don't appreciate the time you spend here, reading these posts, listening to these stories, commenting on the cuties in my life. I really, really do.

So, moving on:

One of the things that was going on this week, in case you hadn't heard, is BlogHer... I am, obviously, not there, but I've been following some of the live blogging sessions, and I have a post I'd like to finish up tonight or tomorrow on a topic close to my heart.

I actually have, like I said, lots of topics close to my heart... it's just the getting them out onto the screen that's the issue. Tonight's topic (besides assuaging my guilt at leaving the same post up for almost a full week) is supposed to be my Grandmother's birthday.

My last surviving grandparent turned 91 today, and put together that way, the subject and the predicate combine to make a very frightening sounding sentence. However, I'm going to put that aside for a bit and tell you that my Grandmother does not seem 91 - she's got some health issues, sure... but she handles them.

I just typed and erased this sentence: "She's the same woman at 91 that she was at 71, and she was probably the same then as she was at 51 and all the way back." I erased it because it is, of course, completely false... she's very much not the same woman she was twenty years ago, or 10 years ago, or 50 years ago, because that's impossible. She's a different woman, because she's had 10, 20, or 50 more years of experience to add to who she is... but the point I was trying to make is that she's still HER.

Add 6, 12, 24, or 56 years, but she's still herself. She hasn't lost more than a marble or two, and since she had 9 children, you can blame that on them. Her health challenges are challenging, sure, but they're a part of who she is now, and she faces them, lives with them, adapts to them, because she has to.
She's still a mother that worries over her baby boy - even if that baby boy turns 66 this year.
She's still a flutterer who can't sit at the table for more than 3 consecutive minutes without having to buzz out to the kitchen to hustle other people along.
She still has her faith, though it's been melted, molded and remixed.
She still has the memories of growing up in New Jersey with a father who had little love to share with the children he had with the wife he mourned the loss of.
She still knows exactly what it feels like to be a young wife and have to leave your family behind and move in with your in laws - and she'll warn you against it early and often, if you ask her.
She can still imagine what would've happened if her first child hadn't been born when she was so young, or if her last child hadn't have come so much later.
She knows - more than most people - what it's like to live through loss, and that there's no escaping it, no matter how you try.
She knows to take what she can get, and to be happy for what she has, but that doesn't mean she doesn't wish for more.

It's an odd realization, that moment when you recognize that your parents or your grandparents are actually people, and not just who they are in relation to you. I'm pretty sure I was about 12 the first time I realized my mother had a whole life before I was born, and it was about 2-3 years later as my grandmother and I were trading books back and forth between us, that it suddenly occurred to me that she probably didn't just skip right over the love scenes. Suddenly embarrassed, I found it almost impossible to pass my books along - there were naked people in these books! And they were having sex! And... talking about it!!! She's my GRANDMOTHER (ALL CAPS!)))

I mentioned it to my mother, who found my embarrassment hilarious, of course, and shared the thought with Grandmother while we were having tea one day. (Both of my grandmothers have always been big tea people.) And Grandmother just laughed and said "NTE, I have 9 children... where did you think they all came from? You think there's something new in those books?" And they laughed as I turned what I can only assume was a very rosy red color.

It was one of those things that clicked in for me, though: Grandmother is an actual person, and she's had sex, she's had good jobs and bad jobs, she's gone on vacations - she's just a person. And I became really interested in her life, and connected to her in a way that we hadn't been able to connect before. I wanted to know, and I started to really listen, and it is as simple as that.

It's strange to me, to be coming up on thirty, to realize that age doesn't change us by default. I've gotten older without acknowledging it, really... and the number hardly ever tallies up to how I am feeling: Most days I feel like I'm the 91 year old, as everyone else runs circles around me, and live the lives I want but can't have... But my brain could be 12, or 21, or 63, depending on the time of day, weather, what I'm wearing.

So, while my grandmother may have turned 91 today, I'd have to say she spent part of the day as a teenager, another part as a doting mother; some reliving her times as a newlywed and some remembering just how many people she'd lost during all of those years. But since some of the day was set aside for acting like any other woman in the presence of those she loves, I hope that made her feel as young as she seemed.

Ta for now, bloggy buddies, it's lights out for this tired chica. I'm going to just lay down for a bit, see if I can't pretend I'm 12 and invincible again. It's worth a shot, right?

Monday, July 14, 2008

The difference a year makes -

Here's the kiddos at our library trip last June -

and here they are this June -

(Contrary to the whole "I"m lounging around and falling asleep" vibe in this picture, we actually came home with about 10 books, and have read them all at least once in the past 3 weeks.)

So that's My Best Shot Monday for this week, I'm looking forward to checking out all of yours.

Friday, July 11, 2008

An outing, a book review, a little bit more

Last night I actually left the house for a non-medical, non-wedding, non-child related reason, and went out and socialized with adults!

I know, it's a shock and a half, isn't it?

I went down to Porter Square Books to meet the very fabulous Laurie, who was holding a signing for her brand new book A Life Disturbed. I'm going to start off by telling you all how utterly awesome this book is: If you read A Chronic Dose, than you know that Laurie's style of writing is intelligent, witty, and honest, which are pretty much the ingredients I consider vital in a good writer. You gotta be smart, you gotta be funny, and you gotta believe in what you're telling me, because any of those three things are lacking, I'm just not going to buy into it. Laurie is, of course, not missing out on any of those factors, and it makes for great reading on her blog and in her book.

The book is a series of essays that discuss what it's like to live with a chronic illness as a young adult. Laurie talks about so many things that I talk about here on this blog: how do you merge being independently minded and having to depend on people for your very health? How does society view those of us who are chronically ill (and how can we not care so very much about how people see us)? What are the gives and takes that chronic illness imposes on our relationships, and how do you cope with them?

I can't tell you how many times over the past 14 years I've thought that I was by myself. Even surrounded by a family who loves me and tries their best to understand, even with the few stalwart friends I had to support me at every turn, even with a doctor who kept pushing, kept looking for the answer: There were still (and are still) so many times that I think "I am the one going through this, and it's a lonely place to be." When I found my first CFIDS listserve (way back in 96-ish), it was like finding a tribe of 'my people' (as we called them). These were people who were my age, who were facing the same things I was facing. Who understood what it meant that I had to give up dancing; who cried with me when I missed my Jr Prom because I had pneumonia; who got together and made me a scrapbook when I was bed bound for 3 months. They understood what it was like to fight with your mom, but then still need her to help you get to the bathroom. To be missing classes and feel like you'd never catch up, but to care more about missing out on the talking that went on between classes or at lunch.

I started gaining friends from all over the world, with a wide spectrum of diseases: It didn't matter that our specific diagnoses were different, we still understood each other. They were the people who knew the shorthand of being sick, and I have been comforted immensely by their presence in my life.

When I stumbled into the medical blogosphere (about 2 and a half years ago now), I felt exactly the same way: These were the people who were saying what I was thinking, who I could ask about treatment or television or anything in between. Who understand that it's not all about being sick, but that it's never not about being sick. And so, my 'tribe' expanded, and I have been much the luckier for it.

I've been visiting Laurie's blog for about 2 years now, and she's definitely one of my people: She just gets it. She talks about all of the things that are important in her life, and because her life is impacted by her illnesses, than so are those things. Who she is isn't just 'the sick girl,' but she understands how it feels to be seen that way. In her book, and at the signing last night, she talked a bit about suffering and chronic illness, and how if you're going to go looking for plus sides to the suffering... and you'll have to look really, really hard, because it doesn't have all that many... maybe it's that you can see the suffering, understand the suffering of others. One thing about Laurie's blog, and now the book, is that her ability to empathize is front and center.

But she doesn't gloss over everything either: Life Disrupted is subtitled "Getting Real about Chronic Illness in your Twenties & Thirties," and it follows through on that... There's not a martyr or saint in the mix, and she busts more than one myth about disabled young adults. She talks about employment, marriage, money, & babies - The title of that chapter: "Can vs Should" pretty much sums it up, and I'll just let you know that I cried my way through that entire chapter, but that's something we'll talk about at another time. Even though there were some really tough parts, it was only because they're so true to life... to my life, anyways.

But there's millions of us out there: young adults with disabilities and chronic illnesses, who are all just trying to figure it out as we struggle through it. Everybody struggles - you all know how many things there are that you're making decisions about in your life, every single day: you know how complex and difficult it is to balance all of your needs together. Now imagine adding a chronic illness to that, and it's just one more thing that tips the scales. So it's nice to be a part of a community that helps you to work through those things, and it's nice to see that books like Laurie's can get published. Because people need to know, and she did a wonderful job of telling them.

She also threw a fan-tas-tic book signing, if I do say so: It may have been my first, but I found it impressive - packed and welcoming. Laurie and her family were exceptionally nice to me - I met her Dad, who had strict orders to keep to the back rows and busy himself with his camera, and who couldn't have been any prouder, I don't think. I didn't get to meet her husband John, but he waved to me as I was leaving, which I thought was nice. People I can only assume were her friends started up conversations with me, and let me sneak in the signing line when it had wrapped around to a place my chair wouldn't fit. And Laurie herself was just as nice in person as she is online... she answered questions honestly and with humor, wrote a sweet message in my copy of the book, and even invited me to a little party they were having after the signing. Which, unfortunately, I couldn't get to b/c it had already been quite a long day for me, and I was worn out, but I hope that she had a wonderful time, and that this won't be our only in-person meeting.

Laurie, congratulations on the book: it's fabulous, the signing was great, and I'm so glad to have met you!

Other peoples, particularly those of you who are interested/have no choice but to be interested in living with chronic illnesses: Buy Laurie's Book!

Wednesday, July 09, 2008

Right Now...

Right now, I am sitting in my air conditioned room, watching the wind ruffle the trees across the street, waiting for the promised storm to finally let loose and cool us all down.

Right now, I'm loving how half of the sky is gray and the other half looks almost painted on, it's so blended and pastel-y. (Totally made that word up, I'm pretty sure.)

Right now, I'm taking deep breaths for the first time in many, many days (short story long? Stupid PUS. Ants. Ant spray. Am finally back in my own room.), and hoping that I'll be able to open the window to take a deep breath before the night is over.

Right now I've shut the TV off, pulled the blind up as far as it can go, and turned the A/C down as low as it can go.

Right now I feel like all I've been doing lately is waiting - waiting for better days, waiting to feel happy, waiting till we know where we're going and when we're going. And I hate waiting. For me, that first, slow climb up to the top of the roller coaster was always the worst part: the clicking of the wheels on the track was echoed in my stomach, suddenly an empty cavernous hole. Panic would set in and every inch forward just proved to me that I was too stupid to be allowed to make choices for myself, that I should never have gotten on this ride in the first place, that everything I knew about ride safety and physics was wrong, that I would, of course, be that one person whose grisly tale would be retold on the evening news.

In a lot of ways, waiting isn't really the hardest part: I'd rather be waiting to find out something bad had happened than to be sure of it. I'd wait forever if it meant I would never get some pieces of news; I'll wait till I day before I let someone tell me I'm never going to get any healthier.

But even knowing that I could be doing worse things than waiting, it doesn't make it any easier to wait, I'm afraid.

So right now, as I'm watching the clouds rip open and the sky light up, I'm thinking of how good it would be to just know something. To just have something to be sure of... instead of waiting.

Wednesday, July 02, 2008

Never let it be said that I don't keep my promises...

when I can.

So, here's some of the Getting Ready batch:

(I wish I had the professional pix, but I still don't... SisterJ is being flimsy with the sharing here, cuz she wants to make sure people see them with her first.)

So: Here's SisterJ at midnight, first picture on her actual wedding day.

And then SisterCh, protecting her hair (did you know "Up-dos stick better to dirty hair?" It's just one of the interesting things I've learned from this wedding), as she finally gets into the shower.

SisterK's hair looked like those ribbon candies, after it was all curled. I was jealous.

And petrified that I'd have to go with like a ponytail, because with an hour left to the wedding, Naomi, the woman who came to do our hair, still had 3 people left, including me. I kept trying to do the "As long as the bride looks good it'll be fine" mantra, but I was freaking out a little inside. Luckily, she zipped right through us final three. :sigh:

Here's 3/5 sisters getting what they could of their make-up on:

SisterJ is the one who knows how to do make-up and stuff. Which kinda sucked for her, as the bride spend some of her day putting on other people's make-up, but she seemed ok with it, since we all came out fancy-dancy.

Which isn't to say that she didn't get pampered a bit too:

Here she is hugging the Best Man, Kev's cousin, who dropped off a little note and present from the groom:

Which were some dazzling diamond & pearl earrings...

and you'll see just how gorgeous they look on, in the next little piece of this.