What stage of grief is anger?

I've lost nearly 30 lbs. since August. Woah. Thirty Pounds. I barely move anymore, but I also barely eat anymore, so it took 30 lbs to actually get any smaller (and I'm not really smaller). I bought my first shirt that was a size smaller over the weekend. Funny thing is, I had to buy my other two shirts and two pair of pants the usual size cause I haven't shrunk that much. What is really sad is that the last time I weighed this, I was two sizes smaller. It's hard to get my head around. More so, it's hard to get excited. I'm more into working on self-acceptance, and those people (of all sizes) who would rather be sick than fat annoy me. If I talk about this (weird weight-loss) out loud, I get congratulations (fair enough I guess), but I've had people call me lucky. I'm in constant pain and I'm scared shitless, but I'm lucky. I'm losing weight without doing anything, so I'm not really getting smaller, so I've lost 30 lbs of muscle, and when I do start taking off fat it will likely leave behind nasty bags of elephant skin, but I'm lucky. Oh yea, and when I am a smaller, nasty, baggy, wrinkly, elephantine looking Jen, I'll still have a chronic illness. Someone else can be lucky, I'd rather be fat.

Man, this sucks

So this has been an insanely bad week. Pain has gotten much worse. My work week was only 2.5 days long, but I seriously questioned my ability to keep my job. I can't decide to just not work... I carry the insurance, not to mention the fact I like my job and I don't want to think about what would happen to me if I didn't have somewhere to go every day. There are people who live with this for years... decades even. Well, they don't work, and they end up on months long waiting lists to see neurologists who accept MCD and get spinal taps in the ER (Highly NOT Recommended). So I found myself saying over and over, "I need a plan." Yeah... I don't have one of those yet, no clue actually. Just "do what you can and let go of the rest" and the fear of the day when that will no longer be good enough.

Anyway, I saw my neurologist on Friday. He's an odd fellow. He seems to be in his 50's and was probably home schooled (no offense). He just lacks social skills, that I would almost peg him for having a personality disorder of sorts. Well, I described how my pain has gotten worse, how I've noticed very subtle vision changes (but I am very hypocondriacical), and the facial tingling. I actually got a reaction out of the facial tingling bit. So he upped the dosage on two of my meds, should take a week to feel better he says. I ask when we will begin to talk about shunt. He said a shunt will happen when it is necessary to save my vision. So, I see my retina dr. in May, but hopefully new med mix will have my pressure down and my eyes will be okay.

Ode to a Hair Cut

I have always said, "To change your life, you must first change your hair." I truly believe it. Sometimes it takes a jolt. A complete change in perspective (which is why I move the furniture around so much) in order to re-focus through the clutter. To change your life, it takes a more re-focusing on yourself. I didn't really need to see myself more clearly, I think I have a good handle on that, I needed to see myself differently. New hair is a way to make vast amounts of change in a very short period. I am different now than I was Saturday Morning. Sure, it's only by the legnth of a few hundred hairs around my face, but what it does for perspective! The image in the mirror is so startlingly different, it changes the lens that I look out at the world through. Boy did I need it, too.

Anyway, here's the new me. My new hair will allow me to not do anything with my hair in the morning and not look like a bum. See, before, I loved my hairstyle but it required work on my part. I stopped doing my hair in the morining becasue I'd end up sitting on the toilet to rest in the middle of blow-drying.... forget about make-up. No time, no energy, and that's if there's no pain. Now I comb it and let it air dry!!!!! If I'm feeling frisky, I put a little styling goop on the ends after it dries to make it piece-y.

Now to bestow much love to my Stylist/counselor. I described, in as much detail as someone who can't summon words anymore can, the hair of someone I saw at Coldstone Creamery. I also showed her a picture I found that had the "feeling" of what it was like. Then I told her my morning needs. The wonderful artistry of Akasha is that my haircut doesn't look like the chick from Coldstone, or like the picture, or like what I was almost thinking (although I didn't have a completely formed thought). What Akasha gave me was Me, and I love it. Other hair-cutters would have just cut my hair like the chick in the picture, and it would not look as good on me as the 85 lb blonde sprite who was wearing it originally. Yay Akasha for knowing what I need when I only vaguely know what I want!

Hi, My Name Is Jennifer......... Hi Jennifer.

Well I've done it. I found an honest-to-goodness support group online and I joined. Even posted. This is big for me cause I'm a lurker usually. I'm just having such a hard time with this whole chronic disease thing. Especially this whole chronic-but-you-look-and-sometimes-act-normal-disease. Having grown up around people who really get into the "Sick Role," I can't stand the pity party (although I admit to whining about cramps... but they're cramps and totally unfair!). I don't want a pity-party. I want understanding. When I say it feels like my brain is trying to push out of my left ear... I'm not exaggerating. It really does feel that way. And yes. On most days we would have a mess if I were to have an ice pick and a spigot lying around. Ok... the spigot was going a bit too far... but I have seriously had ice pick ideation. McGyvering a drain with a pen casing. Something that will make this go away. I digress.

There is someting powerful in "me too." I need community, and with only 1 in 100,000, I might only be able to find 6 or 7 people to befriend in Indy. Well, I stumbled across Daily Strength when I was research shunt placement. It has support groups for everything, including IIH. There was a message board about how people are coping with employment and dealing with the disease. There was this one lady who is a middle school teacher. She has trouble keeping up with reading the assignments (that sounded familiar), focus problems (that too), but she also talked about how she can't remember her students' names anymore. How sad. Just about everyone who posted didn't work and talked about how they couldn't imagine how someone would be able to hold down a job. One guy said he can't even climb the stairs in his house, let alone work. The climbing the stairs comment made me feel better. Maybe now I won't feel so damned alone.

Julius' Birthday

Well, it's official. I'm the mother of a teenager. As of Friday, March 20, 1:36pm, Julius turned 13. (I always thought it was fitting that he was born on the first day of Spring. Had he been born a hour earlier, he would have been a Pisces and technically born in the winter.) Anyway. I don't feel old enough to have a kid that old. All of the sudden he's into friends and talking on the phone, and can stare at his MySpace page for hours. I am now treading the fine delicate balance between allowing him enough freedom to figure himself out and allowing him too much freedom so he finds himself in trouble. Being a mom is tough, but fun. Julius is now using his wit and charm to dazzle his math teacher.

Child Abuse

So I was just looking at facebook. A number of my "friends" from high school had commented on the recent news reporting of a common theme: boyfriend beats up his girlfriend and her child/ren, then child/ren dies. Those of us in "the business" know it well enough. There's been research... infanticide is highest among "stepfathers." Scores an automatic 10 in #10. But now to my point. Everyone's comment is how angry they are, and how the males want to hurt the CP like he hurt the child, and how the CP will get his when he's in jail. Responding to violence with more violence. Hmmm.

Can't wait!

My husband and I watched Back to the Future II the other night. Love the series... Love Michael J Fox. Then I started doing the math. Doc Brown and Marty dash off in the flying Delorian to the future. There are hover boards, flying cars, and 3D holo-gram movie ads. People wear coats that dry themselves and adjust for length. Women wear shiny spandex, men wear two ties, and kids wear CDs on their heads. Lights turn on by voice and doors require fingerprints to open. You charge things by fingerprint too. Ooh, and the Cubs win the World Series! And when should we expect all of this wonderfulness? In about 6 years! I can't wait for 2015!