In Flux

I don't know about you, but for me the week between Christmas and New Year's is always an odd one.  The old year is over, but the new one hasn't started yet.  It's a time for wrapping up old business and gearing up for the new.

For the old business, I'm mostly making sure that my book and knitting records are up-to-date, bills are paid, that kind of thing.  Reading the last of the holiday stories-- tonight's is Carol of the Bellskis, a m/m Hanukkah story.  And wrapping up a stray knitting project-- a hat made from the leftover yarn from my brother's Christmas socks that I intend to donate to a local homeless shelter.

For new business, I've started my first knitting project for myself.  It's this sack sock to collect all the random plastic bags that I keep finding all over my room.  (For someone who rarely leaves the house and shops almost exclusively online, I have a shocking number of plastic bags floating around the place.)  (Bonus, it will help me keep my room clean!)  I've picked up a couple of songs that inspire me for the beginning of a writing soundtrack.  I'm not working hard yet, but I'm poking in that direction.  And I've got my eye on a reading challenge over at Goodreads that should help me control the ebook buying issue.  I felt like crap today (monthly surge in symptoms, plus I'm just worn out from the past week or so), so no activity whatsoever, and no cleaning.  I think I might need the same for tomorrow.  But Wednesday, look out!  I'll poke around and do something or other.  My favorite Wii game encourages me to compete against myself, to always go just a little further, so once I get into it again that should help keep me motivated.

So, progress.

And with that, I will leave you with a picture.  I got up to go to the bathroom, and when I came back I discovered someone had stolen my spot.

It's a little hard to tell, because the bed is so cluttered.  But that green thing is the hat, almost finished then, and completed now.  There's also a cone of white/black/pink yarn that I'm using to make my sack sock.  I'm getting an interesting swirling stripe effect as it knits up.  I'll take a picture in a day or two, when I'm further along and it's easier to see what's going on.

'Night, all!

Occupy My Bed

It's been a tough couple of days.  My body has apparently decided that sleep is off the menu.  I haven't managed to fall asleep before 4am since Sunday night.  Morning.  Whatever.

Which really isn't so far out there for me.  I'm mostly up all night these days.  The problem has been that I had places to be on Tuesday, Wednesday, and Thursday.  Tuesday I had a massage appointment, Wednesday my cousin and her 3 kids spent the day with us, and Thursday we drove down to my SIL's parents' house (an hour and a half away) for Thanksgiving.

I don't do well with changes in my routine.  I *really* don't do well with noise and commotion and crowds.  And I *especially* don't deal well with stacking those things together for several days in a row and then asking my body to do it on about 2 hours of sleep a night.  I feel like I was run over by a bus.  And then the bus backed up and ran over me again.  My whole body hurts, and my legs are so weak that I feel wobbly when I try to stagger to the bathroom or, god forbid, across the house to the kitchen.

So the only thing I will be Occupying is my bed.  It's not like I was planning to go out into the mayhem that is Black Friday, anyway.  At three o'clock in the afternoon I'm probably safe from being knocked over in a stampede and trampled to death or crushed into jelly against locked store doors by a deal-maddened crowd. But there are still all those people out there, with all those germs.  No, thank you.

I will lay in bed and eat peanut butter and jelly sandwiches and read.  Maybe in a little bit I'll watch some TV.  That's about as Black as I can handle.

I Think I Broke Myself

Ouch.

From now on my parents aren't allowed to have birthdays a week apart anymore.  I've been out of the house more in the last two weeks than probably the last six months.  Today should be the last for a while.  Mom and I went to Walmart so that I could pick up a Wii game for Dad.  And I needed some OTC meds, and a birthday card, and some conditioner.

Basically, it was the first time I've been to Walmart with my own money in over a year.  So I bought stuff.  And I wore myself out.  I'd just barely recovered from all the running around last week, and now I'm going to be spending the next couple of days in bed and in pain again.  I got all sweaty (a major sign that I'm over doing it), and I'm too tired and too ouchy to get a shower.  So I guess I'm just going to have to sleep sticky tonight and hope that I can manage it tomorrow.

And then Saturday is Dad's birthday dinner.

I'm taking my sleeping pill early tonight.  If I'm lucky maybe I'll sleep 'til Tuesday.

Ow.

I Have a Date

A couple weeks ago I got a call from my lawyer.  The government has scheduled a hearing date for my Social Security appeal.

This was a pretty big surprise.  The waiting list for these things is insane.  I was told that it was running 18-24 months here in the Indianapolis area, and that because I moved while on the waiting list, I'd be dropped to the back of the line again.  No saving your place!  No cutsies!  I wasn't expecting this for another year to year and a half.

I've been working my way through the system for almost two years now, and every time I get to a new level it comes with a new surge of anxiety.  Fear that I won't be approved, and my financial situation will continue to be dire.  Fear that I will be approved, and I'll have final, incontrovertible proof that this is happening, and that I'm really this sick.

I think that second one is the greater fear.  On many levels I think I've dealt with and accepted my illness, but there are always deeper levels of denial to discover.  Getting Social Security after all this time of fighting for it will make it Official.  I will be a government-recognized sick person, who isn't able to work and financially take care of herself.  (The irony in all this is, the minute you are approved, after years of hassle in most cases, the government starts pushing back-to-work programs at you.  If you were capable of getting back to work, they never would have approved you in the first place.)

Also, I'm scared about the hearing itself.  In a very literal sense I will be sitting there, allowing some stranger to judge my health and how I've handled it so far.  After my first couple of doctors, who simultaneously claimed that there was nothing wrong with me and that my illness was all my fault, the thought of having someone judge me in this way is scary.  And it's not just someone who wants to judge me.  Lord knows there are enough of those in the world, willing to judge anyone at any time for any reason.  This is someone who will judge me and then decide if I deserve the help that I know I need.

Really, the whole thing is turning me into a big fucked up ball of stress and nerves and guilt.  Which of course does wonderful things for my Crohn's and Fibro.

So if you would, please get those FGBV machines rolling.  That I survive the next 6 weeks or so, and that on August 16th all the SSDI judges are in a sympathetic, accepting mood.

Fibro Bites the Big One

I got a tweet today with a link to an article about Fibromyalgia.  The article lists the 60 symptoms that are associated with Fibro.  Let me say it again-- 60 symptoms.  I think it's pretty rare for someone to have all 60, but most people with Fibro have more than one off the list.  We often have many of the symptoms on this list, although the exact combo that we're experiencing at any one moment will shift.

You should take a look at the list.  Some of it is irritating or just unpleasant.  A few are downright scary.  Many of us have more than one condition-- I have both Fibro and Crohn's Disease-- so it's a little hard to know what is causing what.  For example, I have problems with hemorrhoids and everything under the Abdominal & Digestive section of the list.  So when I tick off symptoms on the list, I don't even count those. And some of them are just... weird.  Like "craving for carbohydrate and chocolate".  Dude.  I'm female.  Do any of you know a woman who doesn't crave pasta and chocolate?  So I don't count that one, either.

These are the 30 symptoms that I experience on a regular basis that I attribute to Fibromyalgia:

• delayed reaction to physical exertion or stressful events
• sweats
• headaches
• pain
• morning stiffness
• muscle twitches
• runny nose
• post nasal drip
• earaches
• ringing ears (tinnitus)
• light and/or broken sleep patterns with unrefreshing sleep
• fatigue
• sleep starts
• teeth grinding
• menstrual problems
• language impairments
• short term memory impairment
• confusion
• trouble concentrating
• sensitivity to odors
• sensitivity to light
• sensitivity to noise
• night driving difficulty
• sensory overload
• depression
• anxiety
• unaccountable irritability (although I think I'm perfectly justified in feeling irritable)
• bruising or scarring easily
• hair loss
• tissue overgrowth (specifically ingrown hairs and splitting cuticles)

I don't deal with every one of these symptoms all the time, but I do experience every single one of them at some point within a four to six week period.  Any unusual exertion or stress increases the number and intensity of symptoms.  And a biggie for me-- tenderness-- isn't even on the list.  It's pretty common that I have to dump the cat off my lap because it hurts to much for him to sit/stand on me.  Sometimes my mom will reach out and pat me as she walks by, and I'll yelp from the pain.  A pat on the arm or the leg shouldn't make you hurt like that.

No one should have to live with all of this.  But there are so few answers.  So little is understood about this disease.  Part of the problem is that Fibromyalgia research is woefully underfunded.  According to this article, the government set aside $12 million dollars for Fibro research for 2011.  That's nothing, a very small drop in a very large bucket.  It's no wonder we don't know what causes it, and the few medications we have to treat it are only marginally effective at best.

If you find all of this as unacceptable as I do, write to your Congressman.  Write to your Senator.  Let them know that at least 6 million people in this country suffer (and I do mean suffer-- often silently, because many people, even doctors, don't "get" this disease) from Fibromyalgia.  We need help.  We need reasonable research funding, effective treatments, awareness, support.  We need a light at the end of the tunnel, because let me tell you folks, there are days when it feels like the walls are closing in.  We need more research, and we need it NOW.

I Really, Really Wanna Go

If you're at all plugged into the book world, especially anything to do with romance, you probably noticed that the RT convention was last week.  I've been wanting to go for a long time, but with one thing or another-- the expense, travel, work, being sick and having no money-- I just haven't made it.  Next year it's in Chicago, and I really want to go.

There are a couple of things holding me back at this point.  One is the expense.  This is not a cheap convention.  It's almost $500 just to sign up.  If I don't have a roommate, which with my weird sleep and bathroom habits would probably be best, I'm looking at about another $800 would be my guess.  Transportation shouldn't be a biggie.  Amtrak has a train that runs from Indy to Chicago, and the schedule looks like it should work well for me.  Only $50 round trip, and I don't have to borrow one of my parents' cars for almost a week, pay for parking, and then be alert enough to pilot it for several hours.  All together, I figure this thing will cost me $1,600.  If the social security comes through between now and then, it might be doable.  If it doesn't (and I've learned at this point not to bank on anything when it comes to the government turning over the benefits I'm owed), then there's no way in hell I can afford to go.

The second problem is as much a deal breaker as the money.  Can I physically handle it?  At this point a trip to the grocery store wears me out.  I only leave the house on average about once every 3-4 weeks.  Am I going to be able to manage 5 days of workshops and brunches and chatting in the hotel bar?  I can tell you right now that there are some events I'll take a pass on.  The cover model pageant?  No, thanks.  The awards ceremony?  If an author I really love is up for an award, and present to accept, maybe.  But I'll likely skip that, too.  In fact, I'd probably skip most of the evening parties.  I expect to be nearly comatose from exhaustion and over stimulation by dinner time most days.  I don't know if I can do this, and I'm afraid that it will end up making me really sick.  But I still want to go.

Why?  I want to connect with readers in real life.  I'm getting active on Goodreads, and I have all my Betty friends.  It would be beyond awesome to get a chance to meet a few of them.  And then there are all those other people out there who love to read and talk books.  There will be authors there.  Maybe I'll get a chance to meet some of my favorites!  And as much as anything, it would be amazing to go out and do something like a normal human being.  A late-thirties adult woman who actually goes places without her mommy and daddy taking her.  Adult socialization with someone I'm not related to.  NO Little House on the Prairie or The Waltons on TV in the background.  Does that not sound magical?

So, all I have to do is convince the government to give me my money and then somehow find the energy to manage a five day conference.  Yeah, not likely to happen.  But I still really, really want to go.

Happy Days Are Here Again!

Another round of good news on the medication front.  My doctor's office called this morning.  The makers of Savella (my other Fibro medication) approved my patient assistance, and there was 3 months worth of free meds waiting for me at the office!  Yay!  My Fibro meds are the only ones I take that are too new to have a generic, which means they are the most expensive.  Now that I'm getting both of them for free, my monthly med costs have gone down by about 3/4.  That's huge-- a significant line item in the monthly budget slashed.

In other news, I've got the Kindle down to 724 items.  So far it hasn't made a bit of difference.  In fact, the battery is dying even faster.  But that might be because of all the clicking around to delete stuff.  I'll go back to more normal usage for the next couple of days and see if there's any improvement.

And more good news-- I have a solid story idea to work on.  Last night I was thinking about a story I started almost 15 years ago and abandoned.  The actual pages are long gone at this point (trust me, it's no loss), but the idea lingered.  As I was falling asleep last night it fused with another scrap of an idea, and suddenly I have a viable story idea.  In the next few days I'm going to work on Kelley Armstrong's Outlining 101, and then I want to start writing March 1st.  I'm not going to push myself to NaNo it.  I'm afraid I'll flame out in a couple of days at that kind of pace.  But I'd definitely like to finish March with a nice chunk of pages.  I've also had a little bit of a brain wave about the story I was working on last fall during Discovery.  So I think I may end up outlining both at the same time.  We'll see how confused I get.

Lip Balm Flavor of the Day: Gingerale

Do you ever just feel like a nap?

I took a 3 hour nap one morning this week.  (When your life is one big sick day, you can do those sorts of things.)  It would be lovely to do it again today.  I had a hard time sleeping last night, and when that happens I know I'm going to hurt the next day.  And I do.

But here's the thing-- even those of us whose lives are one big sick day have to leave the house and do stuff occasionally.  On Monday I went to the doctor, and she filled out a bunch of paperwork to get some of my meds for free (hopefully) from the manufacturers.  Everything is all signed and ready to go; I just have to go somewhere to fax it.  We've had snow and bad weather for most of this week, plus I was recovering from Monday, so today is the first day we've had a chance to do it.

I just had a brainwave.  What if, instead of dragging myself out of the house every time I need to fax something (which is fairly regularly), I just BOUGHT A FAX MACHINE.  Between all my medical crap, and Dad's retirement crap, and Mom's Mary Kay crap, I think we can justify the expense.  I tell you what.  I may be a little slow on the uptake these days (shut up), but when inspiration strikes, it really strikes!

Anyway, back to the original topic of this post.  What was it again?  Um, I talked about napping....  I forget what my point was.  (I do this often, which is why there are many posts marked "draft" compared to what's actually posted.)

I'm going to the grocery store with Mom in a little bit.  I want to poke around and put things in the cart that I want.  Just asking for a particular brand of whatever isn't good enough.  Mom and Dad like to talk about when I was little, and I'd constantly say, "I do it myselpst!"  (That's "myself" for those who don't read 2 yr old.)  There's been surprisingly little change in that department in the last 34 years.  I hurt, and I'd really rather stay home in bed.  But the weather is supposed to turn foul again tomorrow, and this may be my last chance to go out for a few days.  And I want to do it myselpst.

I'm off to research fax machines now.  And then later, after I've had my excursion, I think I'll take a nap.