Friday, May 30, 2008

Oh, the moods I've been in

It's been a long tiring week, while my body does it's vicious dance with the germs that want to take up residence permanently. Aside from a fever that just wouldn't quit, my brain just couldn't stay connected to reality for more than, let's say 7 minutes at a time. If this week had had a theme it would've been something akin to "ugh."

So, I'm glad that it's over. I've declared that it's over, and my body is just going to follow along cuz I told it to (hahahahaha). Either way, I'm sick of thinking about it. So, how about some of the pictures I promised you instead?

I'm going to start with some really cool shots of the rehearsal dinner, b/c I'm organized like that. :D

This is our very gorgeous church: I honestly can't imagine getting married anywhere but here. In addition to being our childhood church, it's just really picturesque, so we kinda lucked out there.

Here's Dad, Lil Girl, Oldest Nephew, SisterS and SisterJ - The Bride on their way to get things started:

SisterJ & Dad practice their walk down the aisle (no tears for faux-wedding days!)

Here's the 3 loves of my heart: Oldest Nephew, Youngest Nephew & Lil Girl, all on their bestest behavior!

And the Happy Couple stops to pose on their way out of church.

The rehearsal at the church went quickly, we had kind of an annoying lady running us through it (she kept saying how in charge she was, but she really wasn't). SisterJ was feeling a little bit of anxiety, b/c the church people had screwed up some of the paperwork, but it went pretty well.

I'm going to stop by again later and show you all the rehearsal dinner highlights, keep my mind busy on something else for a while.

Monday, May 26, 2008

Well, Long Time No See

Here I am... alive and... well, not well, but alive! So that's always a plus!

Actually I am much improved: A very short story version of the time that has passed since I was here last is this: The wedding was fantastic, wonderful, fabulous, stressful, awesome, beautiful, powerful, great, and I am thoroughly embracing my role in the creation and enabling of that day and the real blessing that it was. I am also a big fat idiot. Because, as usual, I am unable to not just see the warning signals that my body is sending me, but also HEED them.

The intensity of the past, oh 8 months, combined with the hard push of the last let's say 5 weeks (Christening, 1st Communion, Shower, Bachelorette party, Rehearsal Dinner, Wedding plus planning and crafty times): Honestly, there were times in there that I was really congratulating myself on how far I had come, in the past three years or so, in order to be able to accomplish all that. And then there were other times when I knew I was going way to far and should have put the brakes on.

Like when I couldn't shake this stupid sinus infection that I've had since January. Oh, it went into hiding for a week or two here and there, but it hasn't been killed yet. It just decided to be sly for a bit, try to fool me.

Or the fact that I've had a rash since November that should've been cleared up with a few applications of a certain medicine. That's still here 9 months and 4 tubes of medication later.

Or the migraines that have been more frequent, or the fact that my pain level, even on the medication that slightly helps, was bumping up a notch or two from normal.

The sad part is that, for the most part, I expect to pay these prices: higher pain for more activities, less energy because I've used it all up, more headaches because I'm out in the world around all of the smells and sounds that cause the headaches. These are the consequences I am used to, ready for, and willing to put up with in order to do the things that are important to me. It's just a part of living with chronic illnesses that you have to accept: if you want to do things, you have to pay the price.

Well, the price was slightly higher this week than I had expected to pay, as I manged to downplay a pretty serious infection for the better part of a week, thinking it was just a typical post-party flare up. Flare up of pain, an increase in fevers, a sore throat that wouldn't quit. And, that's how I wound up in Urgent Care on Friday, and barely talked my way out of being hospitalized.

Because I just can't read my own body: It lies. Everything it tells me is misleading, and it's impossible to form conclusions based on past experiences.

Flare up of pain & exhaustion: yes, totally expected after all the heavy duty excursions in the past month. Dialing the pain up from a 8 to a 12... not exactly what I'd hoped for, but still: not totally unexpected. (And so, another warning sign missed.) Because...

Higher than normal temps: Also expected - inflammation makes my temps higher and my pain worse. PLUS I was around all those people, and all those people were kind enough to share their germs with me and my 'can't fight off invader cells' immune system was trying to work overtime to help me out. Not unexpected either (and yet... you've got an abnormally low temperature, normally... so if the thermometer is reading over 100 degrees... you're kind of in trouble. Stop pretending that you're not... that's like 102 for normal people)...

And a sore throat? Run of the mill, for me. Can't remember a pain free day, or a soothed throat, anymore. 14 years later, it's hard to recall that there used to be times you could wake up and not have to think about all the reasons you should keep on going in spite of how much it hurts. (But wait... do you realize that you're wheezing? More than a little? And that you have been unable to swallow food for like.. days now? Soup broth ain't cutting it, sister... Call the doctor)

And so I did, as my fever climbed higher and my tonsils decided to once again meet in the middle (I am an evil spirit, apparently, keeping those two destined soul-mates from their true loves) and my pain became so great that I was forced to wish it was just a normal 8 or 9 day for me. And guess what: Surprise surprise, I have a huge freaking infection! In my tonsils! And my chest! And my sinuses! And am seriously dehydrated! And dangerously feverish! Fabulous! And also... insane for having waited this long.

But here's the thing: when you're expecting to suffer, it's hard to know when you've crossed the line. At least for me. Suffering is part of my world, I keep it tabulated in my everyday columns: trying to figure out a balance I can live with. So when something like this happens, it's hard to say "oh, well... this is more than I thought it would be, it could be something different." Because the prices? They're subject to change without warning or notification, and this is certainly not the first time I've had to pay more than my fair share.

But I am doing MUCH better now: got myself hooked up to some strong antibiotics and fabulous drugs (ok, not fabulous drugs - steroids and lidocaine for my throat, which don't exactly suck, and some opioid for the pain which are laughingly slight, but I'll take what I can get) and the thermometer no longer does that obnoxious "You're on fire" beeping, as evidenced by the fact that I can string words together in fairly cohesive sentences (mostly). (I'm even back under normal: take that stupid germs!) My tonsils are still doing their best impression of Siamese twins, but we're working on that.

And still? If I knew then what I know now: that I'd have to pay this price in order to be there for my family at all those important times? I'd do the same thing, I suppose. (Although maybe a little bit smarter next time? Hopefully? Please???)

So, that's the long story (supposedly made short), and I'll end just by saying that the wedding was really wonderful and I had a great time, and I'm going to get pictures posted here ASAP. Because I refuse to think about my tonsils anymore, and because I want to share the happiness with all of you. (Or... anybody that's still here anyways - blog posts were definitely one of the first victims in the "I have absolutely no more energy for anything extra" run up to the wedding. But I'm hoping to have more to say and things to share for a while now. Yay!)

Tuesday, May 13, 2008

Wedding planning + bronchitis = not fun

We're getting down to the wire here as far as SisterJ's wedding: it's on Saturday. As in THIS Saturday, as in 4 days from today. There are still a ton of things that need to get done, and I'm funnelling my energies (hahahaha - as if there are singular, let alone multiple energies) towards that & getting better (ish) by then, for now. I'm going to try to pop in with some of the details so y'all can see what's cooking, but we'll see how that goes. In the meantime, would you believe me if I told you that I spent part of my Saturday with Hard Times Barbie?

The Bachelorette Party was ... interesting, to say the least.

Be back soon!

Thursday, May 01, 2008

Who're we quoting? (BADD edition)

Alright guys, I'm about halfway through the BADD posts, and they are sooo excellent!! I mean, just mind-blowingly amazing pieces about the political, the personal, the polite, the rude, the ramps, the wrongs and rights, the feelings and the future. I thought I'd give you a glimpse, if you didn't have hours of time to devote today, although I'd go back to Goldfish's place and just start wandering if you had a few minutes. Here are some of the highlights I've found so far: This post by Hoyden About Town, who talks a lot about the political ramifications of disability, good crip vs bad crip, and "shiny happy super powers:" What more could you want? But the reality is, people with disabilities are far more varied and complicated, not a collection of conveniently-cliched characters in morality plays and Hallmark specials. Some of us have carer responsibilities ourselves. And hobbies. And political ideas. And social lives. We are not potplants, pets, malingerers, inspirations, handfuls, beds, wheelchairs, freakshows, mascots, superheroes, or angels. Just people. With lives that aren’t reducible to being an economic unit or someone else’s encumbrance. From the comment section of Missnomered's BADD post, Amanda's comment about CFIDS and how people are always volunteering cures: It seems as if you’re supposed to devote your entire life to “getting better,” and nothing to just living your life. If you try to just live your life, then that is oddly enough called “giving up”. A fabulous line from Cripchik's ... I'm going to call it a call to arms: Life happens to be of higher quality, you know, when you can actually do things like breathe. Then there's this post about Stereotype Threat, and the self fulfilling prophecy, a notion which I find both unendingly complicated and frighteningly simple, but ends with this wonderful tidbit: Activism--feminism, anti-racism, anti-classism, and most relevantly anti-disablism--by challenging stereotypes actually makes them less true. Isn't that brilliant? Doesn't that give you hope? There were a ton of CFIDS/ME/FM illness related posts, (that I've read so far), which is a hard thing to swallow. It's sad, on the one hand to know that there are so many of us out there suffering, and on the other? It's so heartening to know that there are people who understand. Like this line from tigertale7, who's experiences with doctors are eerily familiar... Chances are, if you're only seeing me every several weeks or longer? You're not seeing the reality of my illness. And then there's JayAngel's post... with a fabulous description of healthy privilege, and how you can have it and not even know (Don't worry, I used to be the same way.)& what it means in your interactions with People with Disabilities... When you get sick, and you feel crappy and people expect you to function normally and you can’t and you’re grumpy and you feel awful, you know you’ll get better, and you get treated or wait the cold out and then you feel okay again. I don’t get to do that, I don’t get to know that. Healthy people don’t have to fight for every ounce of energy they have. And that comes across, all the time, when you have no idea it does. And all I want from you, those with healthy privilege, is to see and acknowledge that there are disabled people in this world, and you can’t expect them to be able to do everything you can do at the drop of a hat. Don’t come upon the words “I can’t come out tonight” and hear “I don’t want to come out with you”. Hear what is being said, which is “I don’t have the energy to do all of the activity needed to come out tonight”. If a doctor is told by a patient that they are bedbound and need a home visit, I would like that doctor to hear “I am bedbound and wish to be cooperative and get treatment; I am asking you for help” instead of “I just need to be encouraged to make the requisite effort”. If you go to a friend’s house and their sister’s friend, who has CFS, is lying exhausted on the couch and declines the offer of joining everyone else on a walk, please try to hear what is being said, “I am ill and exhausted, but appreciate being included in the offer”, rather than hearing “I’m too lazy to go for a walk, I’d rather lie here”. ...And I'm in danger of copying her whole post... just go over there and check it out, will you? I'm taking them as I can, so we may be back with even more fabulousness, as I get to them. Happy Sunday, all.

A BADD Post for you

Hi Everybody ~ Welcome to Blogging Against Disabilism Day! I had a heck of time deciding what I was going to write about today, so I did what I usually do when faced with a decision I don't want to make: I procrastinated. I tidied up my piles a bit, brushed my teeth again, started to balance my checkbook. And as I was adding in today's SSDI payment, I remembered all the journal entries I had written about applying for SSDI and what it felt like, to me. I don't talk about money too much here at NTE,(except for the fact that I don't have any) but money and disability - specifically poverty and disability - are intricately linked. In the United States, and around the world, individuals with disabilities are more likely to live in poverty, and according to the World Bank, in third world countries, they make up a disproportionate segment of the "grindingly poor."

I am fortunate enough that these are not my circumstances: I am not among those living in poverty. I have benefits above and beyond what many of those with disabilities can expect in their own lives - I live in the US were I can count on some measure of support from my government - in the form of reduced cost/free medical care and the money I get from SSDI (at least for now, we'll see what November brings). But even that is not enough for me to live independently - were it not for my parents, I would have to make the choice every month between food and shelter, not to mention medications, clothing and other necessities of life. There are housing programs in my area, but they are troubled with the same burdens of all other social services programs: long waiting lists, a one-size-fits-all mentality (which almost never fit me), and lack of funding. Either way, without my parents, making it, financially, would be extremely difficult. It's a constant worry, even with them, but I have this cushion here, which allows me to afford things like Internet (yay!) to make my life more comfortable.

But the choice to apply for SSDI, and then following through the long and difficult process is something that most people don't really think about. So I've dug through my journals and come up with two entries on the subject... the first is from August of 2003, when I applied (for the 3rd time) for SSDI, and was feeling, well, you'll see how many different things I was feeling about it:

Nobody ever says "this is what it is like to be 24 and applying for Social Security." well, this is what it's like.

It's like you've failed. Like you're never going to be able to be more - do more - than you are right now. As if all the dreams and goals you have for yourself are as far out of reach as Mercury - and always will be.

It's embarrassing - to have a Master's Degree - to have earned a Master's Degree - and still be incapable of using it. To be filling out form after form after form where you have to clearly and concisely list all of your inadequacies, even the ones you avoid acknowledging to yourself. To say "Yes, I had wanted to be a teacher, responsible for the care and cultivation of young minds, hearts, souls and bodies, but right now I can't even be left alone to get to the bathroom." To be forced to admit - particularly to yourself - just how bad it really is: how many days a week you can't get out of bed, how many times a day you require help, how you can't lift over 5 pounds, how you can't tie your own shoe some days.

It's frustrating. Especially with such a load of 'controversial' diagnoses (CFIDS/FM/etc) to think that after I've bared my worst secrets and groveled for money I'd much rather be busy earning, that they might not believe me, or think that I've exaggerated, or turn me down - again. As if I had no interest in doing more than lying here, pretending to live. As if my sole goal in life was to get other people to support me - so I could live at home with my parents forever, and spend my time watching Law and Order re-runs on TV.

It's like saying "I give up." And this is the hardest one to swallow. Because I don't give up. What I'm really trying to say is "I just can't do it right now, and I need your help," but that's not what it feels like I'm saying. It feels like I did give up, and now have to beg for enough money to live.

It feels helpless, powerless... to wait until some faceless and medically ignorant bureaucrat decides whether or not I'm sick enough to deserve help. I have applied for SSDI twice already, and each time I was denied. A part of me, a not so small part, rejoiced when they said no, although I needed the money and was totally unable to work, because it meant that I wasn't sick enough - I wasn't the hopeless & forever kind of sick.

It feels futile - to know how much of life I am missing out on, and to be unable to do anything about it. What do you do after your doctor - and every other available, knowledgeable doctor - says "we just don't know what else to do... we can't really help you yet." I know that some people lead crusades to help themselves, or the ones they love. I admire them, I do, but I don't have that strength. I just don't. For me, each day is a battle - from breathing, to sleeping, even eating - every.single.thing. is a challenge right now. I honestly can not remember a pain free day - my last pain free day... I don't know when it was. So that's the only battle I'm up to fighting right now - I wish it wasn't. But it is.

It's more of just living in 'until'. Maybe even the ultimate step of living in 'until' because I've made it official: "Until I can care for myself, do for myself, earn for myself, I need this help. I need this money. To live. To be. Please Help."

It's sad.
It's scary.
It's yet another aspect of being ill that I would have rather passed on by, thank you very much.

But right now? It's also necessary - for my survival, for my sanity, for me. So I'm doing it, again, and I'll hope for the best (even if I'll be praying that by the time they decide, I won't need it anymore.)

The second is from January of 2004, when I received my first check (including the back money from when I'd first applied), and you'll see that my feelings about the money are still pretty complicated:

Got my first SSI check today: $3000! The most money I've ever had in my whole life. I've been vacillating all day between being upset and being happy. First I think, "All of this money, and I did nothing to earn it!" Then I think "Hell yes, I earned it: nine years of dealing with a life altering disease. All consuming chronic pain, dozens of doctors and diseases with no names or treatments; all the complications that nobody expected or could explain, all the symptoms that interfere with my every day, my every hope or ambition or dream." So did I earn it? I suspect I did. But it still doesn't feel good, the way I expect a paycheck would feel: Earned free and clear, through doing the job you love (or hate, as the case may be). A good day's pay for a good day's work. Plus, it feels so final, as if there is little hope for change or improvement.

I just don't know what or how to feel. It's very confusing.

I do need the money: even though I'm living at home, off my parents, basically, I need to be able to contribute something. And still, I'm too sick to take this money and actually do anything with it. Even if I have earned it, I can't just spend it: I'm too sick to shop, even. *This is obviously before I got my laptop and a debit card.* This day is just too conflicting... I don't know what to think.

What are my thoughts today, four years later and unfortunately still on SSDI? Still pretty conflicted.

In some ways, it's a lot easier now than it was then: I've since done a lot of thinking about the responsibilities of the government towards it's people and the need for social services, etc. I don't have a lot of questions about whether or not I 'deserve' the money - I pretty much figure I don't 'deserve' my illness either, but if I'm stuck with that, I should ask for the help I need if it's available. I've gotten to the point where I don't always feel as helpless/powerless with my situation, because I have doctors who work with me and friends who listen when I've feeling overwhelmed.

But I'm still sad and upset that I'm not doing what I want to be doing with my life, that it's just not possible to be working (or having a family or traveling or any of the millions of other things I want to do that require more than I have to give). That's not something that goes away. I don't think it should go away, personally, because that would be like giving up: I've adjusted a lot of my dreams to fit me for now: watching the children in my family, helping to care for them as they grow or writing for websites and on this blog because it's something I can do that keeps me connected to my dreams as well as the rest of the world. I may still be living in 'until...', but I've made 'until...' fit me as best as I can.

Anyways, that seems like a very long post, not just about money, but about all of the feelings that come along with asking your government for financial help. I don't know what other peoples' experiences are, but this is is how it felt for me, to be 24 years old and to realize I wasn't going to make it without some financial help. I was lucky enough that it was available to me, I realize now, and the past few years would've been a lot tougher without it. So for today, I'll be grateful, even if I'd still rather be working. I'd still rather be earning my money at a job I love, feeling like I was doing more than making it through the day.

And now I'd like to direct you to the hub of BADD, Diary of A Goldfish, where there's a zillion and one more posts about a zillion and one more topics, all related, in some way to disability. Even if you can't get through them all today (yeah... I tried that last year... it did not work out), bookmark the page and get to them as you can: I know I will be.

Thanks for reading! Happy May Day all!