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.

Jewelry!

Tonight I went to my sister-in-law's jewelry party.  Now, I'm not much of a jewelry person.  I have one pair of earrings and two puzzle rings that I wear all the time, and that's it.  So I went to support her (it wasn't just that she was throwing a party, she's actually starting up as a rep) and to buy something for my bff, whose birthday is in early July.

I was really surprised.  I found a few things that I really liked!  I ordered a pair of earrings for myself and a really pretty necklace for my friend.  (We rent a beach house every year, and it's become a really important thing for both of us.  The necklace is silver with a cz encrusted starfish pendant.  It's just perfect for her.)  And there are a couple things that I'd really like, but couldn't swing right now.  One was a really pretty silver ring.  (And I think there are a couple more rings I'd like to have.)  Another is a great big pair of hoop earrings.  (I've always wanted a pair of big ol' trashy hoop earrings.  Not that these are trashy, but they're headed in that direction!)  And then there was a silver necklace with a pendant that says "Believe" on one side and "like there's endless possibilities" on the other.  There's an optional second pendant that says "Dream" on one side and "like they will all come true" on the other.

I'd host a party to help my sister-in-law out with her new enterprise, but I don't know anyone in Indianapolis.  All my friends are in Texas and online.  So I was thinking I might ask her about doing a catalog party instead. Does anyone think they'd be interested in helping out my SIL launch her business by taking a look at a catalog and possibly buying a piece or two of fun, mid-range jewelry?  (Nicer than Claire's, less expensive than Kay's.  There is a range of prices, but a lot of the pieces I saw were around $30.)  Absolutely no hard feelings if you're not interested.  I just thought I'd put it out there.  If you are interested let me know, and if she is cool with trying a catalog party I'll mail you one.  (Prepare yourself.  It's a heck of a catalog!)

A small comment on a totally different topic.  The New York Assembly has approved same-sex marriage for the state of New York!  Yay!  I couldn't be more thrilled that very soon everyone in New York, regardless of sex or sexual orientation, will have the right to marry, and all its attendant privileges and responsibilities.  Others will have more to say on this issue (and say it in a way that's both more powerful and more entertaining than I ever could), so I'm just going to say Woo Hoo! and leave it there.

Woo Hoo!

And now, to get back into a habit that has fallen by the wayside lately, the Lip Balm of The Day is: Cat Pee  (I know, it sounds gross.  But it's citrusy and delicious.)

Windows!

Today was a very busy day.  After over a week of rain outs and rescheduling, the work crew came today and replaced every window in the house.  It was noisy and weird, having a half dozen strangers traipsing in and out of the house all day.  But it was supposed to take two days, and they finished in one.  This was an inexpressible relief to me.  Also, we never got out of the 70s today, so the house stayed nice and cool while big holes were opened up all over the place.  We took Trouble to "summer camp" to keep him out from under foot, and he's still there until tomorrow.  Which means I get to sleep in the middle of the bed tonight!  Yay me!  (Trouble is a total bed hog.)

While the crew was here banging around, Mom and I went out to run errands.  Mostly I sat in the car and read while she did stuff, but still.  At least I left the house for a little while.  The one place I did go in was Target.  I needed Midol (sexy!), plus I wanted to get a sleep mask.  And I discovered that Dr. Bronner's was on sale, so I bought a bucket full of soap.  Dr. Bronner might have been... interesting, but his soap is good stuff.  I'm less rashy now that I'm using it, and less smelly.  Well, less smelly in a bad way.  I get the lavender scented kind, and while it's not heavy, the scent lingers nicely.

I'm going to have to call Amazon again tomorrow about my Kindle.  It's not doing anything horrendous, but it's not acting quite right, either.  Last night all my content disappeared for a little while, and then it didn't want to turn off or reset.  I finally got it going again, but now it's not bringing the most recently opened books to the front of the file.  Which doesn't sound like a big deal, but is annoying when you've got forty books in a file and you have to page through the whole file to find the one you're looking for every time you want to read again.  It's still not time to replace it, but every time it does something screwy like this, that time gets a little bit closer.

So, that's what's going on for me right now.  Nothing thrilling, just the every day blah, blah, blah of life.

Just for the Fokker

I saw this and immediately thought of Betty Fokker.  Don't you agree?

Merry Christmas, Darling

I know I keep saying this, and then I never do anything.  But this time I really mean it.  (I think.)  I'm going to start writing again.

One of the m/m publishers that I've been reading a lot lately has a call out for holiday short stories and novellas.  5,000-18,000 words, due September 1st.  I can do that.  I just have to get into a Christmas frame of mind.  To achieve this I've been listening to Christmas music.  The fact that it's been in the middle 90s (a solid 15 degrees above normal for Indiana this time of year) isn't helping.  But I'm going to give it the old college try.

Tomorrow I'm going to start poking around the interwebs, looking for images to inspire me, both hunky and Christmassy.  If you have any favorites, please be sure to link them in the comments.  I could use all the support and inspiration I can get!  If I can figure out how I did the last computer collage, I'll make one and post it when it's ready.  If not, I might have to resort to paper and glue stick, and then God help you if you want to see it, because I haven't the foggiest where my digital camera is.  So, keep your fingers crossed that I find the collage website.

While you're crossing fingers, keep 'em crossed that I manage to get beyond the soundtrack and collage phase.  'Cause I'd really like to write this Christmas story and get it submitted!  (Once I get it written and into the hands of an editor I'll start worrying about whether or not anyone actually wants to publish it.)

Oh, and since I haven't done this for a while, my lip balm of the day is the thoroughly un-Christmassy lavender lemonade.

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.

The Crazy Train

I'm almost-- not quite, but almost-- ready to consider therapy.  The thing is, I still don't want to change.  And until I want things to be different, not my parents, not other people, I just don't see it being a worthwhile endeavor.

Because you see, what I want, what would make me happy, is for things to go back to the way they were before I had to move.  I don't want to be in Indiana.  I don't want to live with my parents.  I want to have complete control over 99% of my human interaction and mostly to be left alone.  Therapy can't give me my apartment in Houston back.  It also can't give me a body that doesn't hurt all the time or randomly and urgently expel everything I've eaten in the last week.  Which is what I want, part 2.  To be rid of all this physical stuff and live a normal life at home in Houston, where I belong.

And what others want from my therapy is stuff that I decidedly do not want.  Mom seems to think that therapy will make me want to spend time with her and listen to all her gossipy, whiny, repetitive stories.  Yes, I used to do that.  On the phone, where I could be totally ignoring her and doing something else.  Can't do that so much in real life.  I think therapy is also supposed to make me want to sit in the living room in the evenings and watch lots of Wheel of Fortune and the Hallmark channel.  I would NEED therapy after that, y'all.  I'll stick to my room and my Law & Order, CSI, and NCIS, thanks.

I'm also kind of worried about any meds this hypothetical future therapist might want to put me on.  There's a strong chance that they'll clash with what I'm already on.  (Fibro meds are in a similar class of drugs to a lot of anti-depressants.)  I don't want to change my meds.  They may not do a lot for me, but they're better than nothing, and thanks to the drug companies they're free.  New meds may or may not do anything for my pain and may or may not be free.  And the only other thing I've found that helps and doesn't make me violently ill is a narcotic that was pulled from the market because it was making people's hearts explode.  So it's the current stuff or nothing.

Yet I know the stuff I'm doing is not normal.  Hiding in my room 24/7.  Only leaving the house once a month, if that.  Dreading social interactions.  Staying up all night and sleeping all morning.  Losing track of the day, the date, friends.  Reading constantly to avoid real life.  I know these things aren't healthy.  But they're what I want.  They're the best I can do right now.  And the sheer energy involved in changing any of it is overwhelming to contemplate.  Especially when it's not going to get me what I really want anyway.

So that's why I haven't started therapy yet.  I'm getting there, maybe.  Probably.  But I'm not there yet.