Friday, September 28, 2012

Quittin' The Hard Stuff With Help From Dr. Google

*****You all know I'm batshit crazy, borderline psychotic,  and of questionable moral character.  But this time, I really need y'all to pay attention.  I AM NOT A DOCTOR.  I never even dated a pre-med student.  Please ALWAYS talk to your doc before doing anything stupid.  Pretty much what I'm saying is, "do as I say, not as I do".  :::ahem:::

I'm a complete pill junkie

Me, anti-pill.  Anti-western medicine.  Gobbling 30+ pills a day. Except when I forget to fill my 2-week supply containers, that is.  :::sheepish:::  But that doesn't happen much, I've gotten better about it, less ambivalent.

But, I'm over some of the pills. 

I ditched the Ambien.  Gladly.  My credit cards couldn't take much more, I assure you.

Next up: Cymbalta.

Many moons ago, when I was a sad, pain-filled fibromyaglia patient, before I new the depth of my health problems, they put me on Cymbalta.  They meaning the Rheumatologist I fired, and the first primary care doc I fired.  They said it would help with the constant pain in all my extremities, and the bonus it, I wouldn't be a crying stabby mess.  So I reluctantly began a 2 year journey on antidepressants.

They fucked me up.  I was quiet (like, serial killer quiet) for the first couple months.  MONTHS.  Not that Sky King didn't enjoy the break at times, I'm sure.  But quiet Aimee is you're-in-trouble Aimee.  Not good.  So, our convos went like this, mostly:

SK: Everything okay?

Me:  mmmhmmm

SK: Okay.

:::five minutes later:::


SK: Everything okay?

Me:  mmmhmmm

SK: Okay.

Lather, rinse, repeat.

Then, I acclimated.  The pain was diminishing, and the side effects weren't intolerable.  I had to make some adjustments, because antidepressants are known to effect :::ahem::: desire.  So, mental fixes there. I had dry mouth.  CONSTANTLY.  Fine, whatevs, carry water.  It's good for me, anyway, right? Night sweats? Not fab, I can assure you.  Especially at 39.  Mood stabilized, so that I was more chill, less quick to anger, unlikely to hide bodies in shallow graves.

Then I had to up them.  Then, my insurance changed, and $6 a day for pills that trash my liver, keep me from enjoying a couple glasses of wine, and *might* be causing more side effects?  Nah.  Not so much.

You see, when you have to take a bunch of crazy pills for even crazier diseases, and you are constantly hit with new symptoms, new reactions, new contraindications, and you get to the point that you're all, "Fuck this shit.  What can I give up?"

So, of course, the ones that cost me the most, on many levels, are the first to go.

Since my most recent primary care doc, who I actually like except for the fact that he's regularly running two hours late, by 8:30 am, seemed unable to call me back about my desire to quit cymbalta.  So, I called Dr. Google.  He's always there when I need him, btw. 

It seems that when people are coming off cymbalta, the withdrawals are fucking brutal.  2-week migraines.  Murderous rage for one, please.  Sensory disruptions.  In the middle of all this, I'm already having issues with (I think) one of my antibiotics, that is fucking with my ability to see stuff.  Not good, right?

So it seems the message board say this:  Docs put you on Prozac.  Then, they wean you off Cymbalta.  Then, wean you off Prozac.  Easy peasy, as far as 6 months go.  Right?

Not.

So, I went back to the message boards.  They have one called, cymbaltawithdrawals.com.  What the what?

And it seems, there are people that have researched the pharmacology of the shit.  And each capsule is filled with little balls.  Each ball is coated, for time release. So, people went in, counted that shit out, tapered down.

So did I.  Because really, my street cred as a junkie wasn't quite up to par.

After three weeks, I'm not quite so homicidal.  Depends on the day, or minute, really. Mornings are rough, what with the "trying to get everyone out on time without casualties" thing.  Setbacks, like irritating landlords, stubbed toes, mounting medical bills, and stupid people in the car in front of me, and shit gets a little dicey.

But I'm done.  It's been 5 weeks, I tapered down slowly-if not so consistently-with my acupuncturist giving me stuff to detox the ickies out, and the promise that I would totally detox at the end of it, which I'm in the middle of, now.  and no one is wandering around, wondering why they have a hatchet in the back of their skulls.

Progress, I say. 

So, I'm fully committed to going with only the meds that have obvious need.  Yes, I could use to have my mood a little less psychotic.  I'm sure MANY others agree.  Especially the poor people sitting near me when my son is playing football, and the refs have a bad call.  And the people near me when I cuss out the morons in front of me while driving.  And a bunch of other people.  But, at the risk of humanity, I am siding with my liver.  My poor poor liver that has been through so very much.  College was taxing for it, and when I began having health problems when I was 12, things were not looking good for my poor little liver.  It's time for the damn thing to get a break, right?

I'm hoping, as is half of Northern California, to find something that will keep me from being a complete anti-social ass. 

Suggestions, and prayers for humanity, welcome.

Wednesday, September 26, 2012

Who Am I? Or, The One Where I Link A Bunch Of Other Awesome Posts...

I'm not special.  I'm just a regular(ish) person.  I have a family; I have two awesome (most of the time) kids.  They push me to be my best when I don't wanna.  I have a wonderful PATIENT husband.  He puts up with my mouth, my attitude.  My swearing.  Oh, GAWD, the swearing. I put up with his gassy ass.  It works.

But seriously, I have met some cool ass motherfuckers on these here interwebs.  Some have health problems like me, some don't.  We all seem to struggle, and find ways to make fun of those struggles.  Which is why I blog.  Because I'm sick of struggling, alone.  I mean, I have great support, THE BEST, really.  But it's not quite the same as someone who struggles the same way.

Some people like to mull things over, work it out internally, keep it in, pretend it isn't there.  I am NOT that kind of person.  I'm fine with them---to each their own when it comes to how we deal with the shit hands we are dealt.  But I need to connect.

Sometimes it's the shit that makes you the maddest, that inspires you.  Lyme disease inspired me.  It inspired me to put myself out there.  All of it---the ugliness, the trials and tribs, the irritation, the depression, the pain, the hurt, the confusion.  ALL of it.

 I have always been a big talker.  And I love attention.  Like a whore that is too chatty.

But, I have a penchant for "putting it all out there---" no matter what "IT" is.  And, I don't care.

That's not true---I do care.  I care enough to share.  HAHA!

Everyone in RL jokes with me---"this is going on Facebook, right?"  or, "please don't blog this".  Why do I do it?

Because I can't stand the thought of others out there, suffering, with no one that understands to catch them when they fall.  They have to endure, day in and day out, without someone to drive them places, remind them to take their meds, keep them from doing too much.

Wanna stalk me?  There's always room for more stalker.  I openly encourage creepiness-your weird habits? Safe here.

Options:
  • Follow me on Facebook--all my blog posts are linked, plus extra bonus material and bloopers. https://www.facebook.com/fearlessfibrowarrior.  You can even share your favorite post with others, who also like to snarf coffee out their noses onto their work keyboard instead of actually working.
  • I tweet!  Totes down with the Twitters.  Once again, full of the blog, and occasional intelligent snippets from my life.  Compelling, I assure you. https://twitter.com/FearlessFibro
  • What else?  Oh.  You could become a regular stalker, by following me directly.  See that thing over there, on the right, where it says,  "Join this site"?  Go there.  Sign in.  There are 46 wonderful people waiting for new friends.
  • Join Disqus.  It's amazing, and you get to comment your way through all the amazing blogs there are out there.  Mine, first, please.  Then others.  We attention whores drop EVERYTHING when we get a comment.  Even a mean one----we are desperate, not discriminating.
That's enough pandering/begging/whining for the day.  Now, go read some more amazing blogs!  I follow a ton, myself----check out my list. (It's somewhere here, I can't remember, and I'm too lazy to look right now.)

Monday, September 24, 2012

The One Where I Almost Stab Myself in the Eye

It's Day 4 of the "eye twitching, dizziness, can't drive myself without fearing for the lives of others, want to poke my eyeballs out because they are so freaking annoying" episode.

Too vague?

Here's the deal. A couple weeks ago I had a day, til about 7:30 that night, where my eyes were funky.  They felt like they were doing that crazy cartoonish roll in the sockets that cartoon animals have happen whenever they get spun to fast, or fall off a cliff, or whatever.  Visually, however, nothing seems amiss.  It's just that, every time I move my eyes to look at something new like the keyboard to the screen then back again, or while I'm scanning for peril on the highway, I would get about 1-2 seconds of this feeling in my eye, joined with an amusing "whomp whomp" sound in my ears.

Truly, joy.

Then it stopped, and I was so thankful to not have creepy cartoon eyes.


Then it began again.  And hasn't stopped since.  It's Friday, and I'm getting DONE with it.

A little history:
When you have health problems of this magnitude, you are encouraged by your bevy of doctors to look shit up, so you can narrow problems down to WTF is the prob.  This is how this goes:

Google search:
  • eye problems Lyme disease
  • eye problems bartonella
  • eye problems cymbalta
  • eye problems ambien withdrawal
  • eye problems antibiotics
Then I get super fucking creative:
  • optic dizziness rifampin
Ding ding ding!!!!!!!

Rifampin, a serious motherfucker that is typically used for shit that's pretty damn hardcore (meningitis, TB) has been known to cause vision problems, as well as eye problems.

This means, come Monday, I have to call Dr. Lyme, (who, incidentally, WILL take my crazy ass call) and deal with the possibility that he might want me to ditch the Rifampin.  Sucks, because I feel better as a whole than I have in YEARS.  Which also means I have to up my treatment to work harder, which also means I won't be feeling great for long, so it goes.

Ugh.

But I also can't keep asking Sky King to drive me all over the place. Especially when I want to secretly try on boots we can't afford.

Sheesh.

Saturday, September 22, 2012

Turns Out, Being A Judge-y Asshole Doesn't Get Me Better Service

We moved.  Again.  To a house that (hopefully) does not have a mold issue.

:::le sigh:::

So, Sky King and I did the whole, "establish new service" for all the shit we can't live without.  Like heat, air, gas.  Cable and organic produce deliveries.  You know, the essentials.

We did the "Internet account log-in request new service" stuff.  I took care of electricity.  Then gas.  Then produce.

I got a confirmation email (I guess, I wasn't really giving two shits, nor paying attention) about the gas being stopped at the old place.  I remembered to tell Sky King to go hang at the new place from 8-12 on Wednesday.

Wednesday waiting day came and went.  No gas man came and went, beyond Sky King and his affinity for all things spicy and burrito-y. 

At no point, did anyone think to call the gas company and reschedule, so that we would have water not set to "arctic" come Friday (moving day).

But we were also finding out that the dipshit that used to live here not only left a cat, but left Comcast on.  So maybe we figured she left the gas on.

Either way, this did not matter on Wednesday.

It mattered on Saturday.

Me: Princess, go take a shower.

::::shower happens, child comes out in clean clothes with wet hair:::

Me: Monkey Boy, go take a shower.

:::more showers happen, boy comes out, complaining that Princess used all the hot water:::

At this point, I delay my shower, because I have surmised that the water heater is shitty, and can't handle more than one shower in a short period of time.  Noted. I did not, however, think further beyond.  If I had, I might have realized the great Truth of no hot water sooner. possibly.

Later, I get in the shower to wash off the filth, sweat and dust.

No hot water.

I scrub the essentials, jump out.

Me: Honey, did you turn the hot water heater up two days ago, when I asked?
Him: No.  I couldn't find it.
Me::::trying not to choke him:::  Would you mind doing that?
Him: Sure.


Umm, there's no gas.

Me:  Fuck.


The next day, he comes to me with his phone in hand, with the comment, "Wow, you better tell my wife that.  Good luck."

This is the part where they tell me they have no record of me turning on service, and it will be 48 hours before they can get anyone out to help us.

After what seemed like 25 hours of discussion about how unreasonable I am, and how I should have known it wasn't happening because I didn't get a confirmation blah blah blah, I might have said, you're telling me that we can remotely bomb an entire NATION, but I can't have hot water for two more days, because it is impossible for you to tweak the schedule to get someone out here sooner? Seriously?

Then it went downhill.

I was transferred to a supervisor, where I dazzled him with my witty banter about 4-day-old puberty sweat, and stanky asses, and moving, and heat.  He was impressed, I could tell.

Then it got ugly.  All I asked was could he pretty please with organic, fair harvested, free trade sugar on top, get someone out sooner.  Or, walk me through breaking into the box myself, so I could press the damn "gas on" button.

Then he began reading from his script.  You know, the one they pull out whenever they don't want to give people their way? The one that reiterates all their bad news, but makes it sound like you deserve the fate they are handing out? The one where they are NOT HELPFUL?

That's when I got all business-owner-y, talking about customer service, and job security coming from that same service.  And things got worse.

Me: So you're telling me there is no way, AT ALL, that someone can come to my house for all of 5 minutes to flick a switch, or hit a button, or whatever, because somewhere along the way my request was lost in the Internet ether?
Him: Yes,ma'am.  (This is where he continues to read from his script, where most of the sentences begin with "you should have" and "in the future".)

Have I told you, I am stepping down off my awful anti-depressant, and one of the many side effects of doing so is a searing murderous rage?

Me:  What, are you Union, or something?
Him:  (First sign of having a personality) Yes!  We are!  It's amazing for the workers!  Blah blah blah....
Me: But not so much with customers, I see.  Have your supervisor call me.



It's not looking good for the future of our body odor, people.


Friday, September 21, 2012

Murderous Rage, For Two, Please.

Sky King likes to be helpful and supportive.

To this end, he is joining me in my food detox, complete with ClearVite protein powder.  It's a 21-day thing.  TWENTY ONE LONG ASS DAYS.

I thought I would be the worst, what with the not eating the yummies, and all.

Day One
Sky King: How 'bout next Monday?
Me: No. 

:::thinking thoughts:::
 
Today.
Him: Fine.  What can I eat?
Me: Stuff from this list:

  • Fresh water (8-10 glasses a day), herbal teas, green tea, fruit
    juices (no sugar added), vegetable juices
  • Grain foods made from rice, millet, quinoa, buckwheat, or tapioca
  • Fresh fruits, vegetables, beans (navy, white, red, kidney, etc.),
    peas (fresh, split, snap)
  • Fish** (not shellfish) and moderate amounts of chicken, turkey,
    and lamb
  • Olive oil (flaxseed oil in moderation)
Him: Can I have a banana?
Me: Yes. 

:::later:::

Him:  I'm HUNGRY.  For real food.  Let's go to that Vegan place.

:::later:::


Him: I'm hungry. I want more food.  Where's the food I can eat?  I want something that's good.  I don't want this almond butter.  This smells like shit. Where’s the good stuff?  Why didn’t you go to the store? Will you go to the store? And will you buy stuff I like, that I can eat?  I’m starving.

Me:  :::laughing so hard, no noise is coming out of me:::

I don't see him lasting 21 days, since 4 hours was torture.  For me, listening to him.

Misery loves company.

 

Thursday, September 20, 2012

Doctor Feelgood

We went to see Dr. Lyme, Sky King and I.  We had our usual gear---water bottle, purse, gigantic checkbook, notebook and file filled with lab tests, diagnoses, etc.

As we sat, I overheard the stuff I usually do----phones ringing, people answering, magazine pages flipping.

And as usual, I heard people on the phone telling callers that "he has a few callers waiting, and his 9 o'clock is already here".  That's me.  I'm the 9 o'clock.

At nine oh five, I was still patiently wait my turn, perusing back issues of Dwell and Outdoor Living and Treehuggers United or some such drivel.  And, I like the wait. Not just because I find amazing uses for empty watering cans and recipes for the "best pork rib marinade".

Why?

Because Dr. Lyme spends each morning, from 8 to 9, taking calls.  From patients, from potential patients, from people that have heard what he does, who he treats.

And sometimes, that caller is me.  I call in, and wait.  When he picks up, he has my file, and he is thoughtful.  He is patient, and answers my questions, encouraging me to call with any other questions or concerns.  Who does that? Dr. Lyme does.

But maybe you are wondering why I don't sing his praises out loud---let everyone know there's a guy out there that helps people like me.  And, maybe there's more-maybe there's one for you, or your friend, or your loved one.

Because LLMDs (Lyme Literate Medical Doctors) have to be on the down-low.  They have to keep their practices safe from insurance companies that wish to discredit Chronic Lyme Disease, and the treatments we receive.  The treatments that help to make us well.  Or at least better.

There is an organization, ILADS.org, to get information about Lyme Disease.  You can email them for a doctor near you, that will treat you.  But you can't see a list, or scroll through a ton of options.  Many doctors won't treat me.  Or, they will, but they will treat me for pain.  Or for depression.  And if I had Lyme Disease, I am done with treatment, because the longest approved treatment, according to the IDSA, is 28 days of antibiotics.  That shit happened, oh, 7 months ago.  I guess I was cured then, but it just takes a while to catch up?

So anyway---I have this amazing doctor who spends too much time with me.  Then, he gives me the medications he sees fit, based on MY situation.  MY symptoms, MY results, MY reactions.  Which is why I see him so often, and call between visits.  And for this, I fork over enough money to send my entire family on a whirlwind European vacation.  Instead, they get to open doors and jars and water bottles for me, and secretly wonder if I will get well, or if this nasty disease will kill me.  I tell them it won't, that I am on the mend, that I will never be as bad as some of my friends online, the ones with the seizures, the ones that are bed-bound.  I tell them we caught it early enough (because after 27 years is when it gets really bad, I suppose...). 

And all along, I hope I didn't pass it to any of them, through birthing them, loving them.

Tuesday, September 18, 2012

Snitches Didn't Get Stitches-This Time

I am fired up.  FI-EEEERRRRRRRD up.

I just left my local store-Safeway.  And I witnessed something that boiled my blood, chapped my ass, ruffled my feathers.

As I was searching for some hotdog buns, I saw a couple, early 40's, unremarkable.  Except, the dude was mawing on a mini croissant while holding a large clamshell container of more buttery goodness.  Not a big deal-I get it. You walk around, getting hungrier and hungrier, waiting for your wife to make a damn decision.

Then, he set the container, and the half-eaten one, on a bakery display.  Walked away, over to a new display, and began to look at THOSE items.  His body language was clear: I'm done with those 12-for-$5-croissants.

I said, gently and full of compassion: HEY!!!! YOU MIGHT WANT TO TELL MANAGEMENT YOU AREN'T BUYING THOSE, SO THEY DON'T SELL THEM TO SOMEONE ELSE.  THAT'S GROSS, YOU FUCKING PIECE OF TRASH!!!!

See?  Classy. As usual.

Then, I walked around the corner, and spied a staff member.  I said, "Hey, there's a piece of shit and his wife in the bakery department eating out of containers and putting them back. FYI."

I went about the rest of my trip, heated and shaking, wondering if I shouldn't have worn my son's football jersey with WALKER clearly emblazoned on the back.

I said I was ANGRY, not BRILLIANT.

Then, I saw the staff member, befuddled, because the croissants were gone. 

I figured I might encounter the shoplifters in the store somewhere else, and they might say, "See?  I just set them down to look at the Enteman's!".  I had my comeback...."Whatever helps you sleep at night, thief!"

Unfortunately, I didn't get to use my comeback.  Damn.

But, my time with those damned croissants wasn't over yet.

There they were, complete with one missing half a buttery flaky chunk, sitting by the Rockstar display.


GRRRRRRRR.  I found my staff member, ranted a bit more, handed over the loot, all the while griping, swearing, and head-shaking.

Seriously, people.  I GET that the economy sucks.  And maybe $5 is too much for croissants.  Maybe not.  But what I also get is that, I hemorrhage cash more than anyone I know, whether it's co-pays, prescriptions, Doctor visits, or fab boots.  But for crissakes, when people blatantly pull this shit, I just cant help but think the entire country is going to hell, partly because people are batshit cray, and in serious need of some bitch slappin.

Did I mention I have been trying to kick my anti-depressants?


Friday, September 14, 2012

Hopes, Dreams, and Mud. Who's In?

Being all responsible and bad-ass, I plan for the future.  It must be the successful business woman in me.

Also, I have had a few tastes of what things were like, back when I could engage in physical activity and shit.  You know, when I didn't spend 3 days recovering on the couch, over an afternoon of frivolity.  Yes, I am aware I am delusional. 

But join me in my mental illness, when I say, I'm fucking done.  DONE.

So, in the interest of being all, "mind-over-matter-y", I'm looking ahead, to when I am better.  BETTER better.  Not just, kinda better. But really, sink-your-teeth-into-fun-stuff better. Binge-drinking and gluten-eating better.  Run around burning the candle at both ends better.



I have really REALLY been admiring this billboard in town for something that has the words, "5K" and "Mud" in the sign.  Seriously.  

But being all logical and shit, I am planning for the waaaaaaaay distant future.  Like, in a year? Trust me, for a recovering over-achiever, this is epically far from now.

Yep.  I want to do one of those fun, dress-up-crazy, get half-tanked, run around like fools, slide through nasty ass mud, 5Ks.  For reals. I walked one, once, with a bunch of chubby bitches for Weight Watchers (fat lot of good it did me, though). Why couldn't I run-ish one?

Who's in? I've got me, and Sky King.  Any other takers, Fall of 2013, in the Sacramento region?  We could do it as a group, with obnoxious LYME GREEN tanks.  And maybe we could all carry spoons?

TO DO LIST:
Stop being all chubby, schlubby, and jiggly
Start moving beyond the current circuit training of to the couch---> to the potty---> to the fridge
Get off medications that keep me out of sunlight
Stop experiencing copious amounts of joint and muscle pain

Keep track of my progress, here at FFW, by following me, on the right-hand side of this page, right about here....
<-----------------

Or, knock some sense into my head.  Either one, really.


Wednesday, September 12, 2012

Internet Infamy. BTW, Where Is My Freakin' Wikipedia Page?

Today, my internet infamy grew just a scoach. (It's a word, Judgy Judgertons.  It means a teeny bit.  Check Urban Dictionary.)

This was a post of a friend of mine.  You can tell right away we have grown apart.  Probably because she's all classy and shit, being a show-off.

Driving [redacted] to preschool this morning I pulled up to a red light. Looked to my right to see a woman in an identical white SUV, I assume taking her child to preschool, sporting the same white bejeweled ceramic watch as me, sipping coffee through a straw, like me, so as to not stain her freshly bleached teeth, hair pulled back, like mine. Look to the car to my left and see the exact same thing. I'll bet they both had on black yoga pants too. What a suburban cliche I've become! :)

I laughed, because it's always funny when you realize enlightening shit about yourself.  I also laughed, because I got roped into the same drop-off as she did, on the same morning, but my comment was slightly different:


Aimee Walker Better than me, hair and teeth both unbrushed, Jammie pants, distended braless boobs, no shoes, hoping I don't wreck and have to get out.
5 hours ago via mobile · · 9

Did you notice anything?  
First, I'm keeping shit real.   Props.

Second, this TOTALLY happened (two days in a row....).  And I seriously was concerned I would get waved at by a mom that wanted to chat me up about something they heard/saw/did, or worse, a family that wanted to say "hi" to me as they walked to school as a group, younger sibs in tow.  This last one was the biggest fear, because there are two new families at my kids' school, that were in Preschool at MY school where I am the administrator, and I can't even imagine how embarrassed I would be, with food stains on my tank top from the day before (that way I don't have to wash jammies, because I love the freakin' earth, judgmental bitches...).  Hair askew.  Teeth, funkified.  Braless (truly one of the scariest sights, I assure you.).  Also, wrecking would be bad, because who wants THAT to come at you, especially before a large dose of caffeine?

Now, all I can think about is, maybe I should get my teeth whitened.  And, maybe I shouldn't dress like such a piece of shit.  And why are my kids okay with it all. 

Monday, September 10, 2012

In Honor of Invisible Illness Week, Sept 10-16

This week is a week of awareness, for people that have invisible illness.  To me, that means that there are people around you, EVERYWHERE, that have something going on in their lives that prevents them from living fully, engaging in the things that give them joy.  Oh, and the meds.  They take a shit-ton of pills.  For people that put up with this kind of shit-like me-some of our hope comes from knowing we are not alone.  Also, we can find connections with people around us, struggling with similar issues.  I have encountered many inspirational things over my past years dealing with my health problems, and I hope this helps people to understand what it's like, to be ME.

***If you know someone that is struggling with an invisible illness, send this blog to them.  Or find a resource for them in the are.  Or call them from the store and ask what they need.   Or, all 3!
  

1. The illness I live with is:
Chronic Lyme Disease, Fibromyalgia, Chronic Fatigue, Reynaud's Phenomenon, Major Depression
2. I was diagnosed with it in the year:
FM in mid-2011, everything else sporadically til Jan 2012, when I got the Chronic Lyme Disease dx. Apparently, everything wrong with me is supposed to go away when the Lyme Disease subsides. 
3. But I had symptoms since:
Wow.  Seriously?  My Lyme doc and I traced it back to when I was 13ish (1985?).  I have struggled with various things potentially because of Lyme off and on since then, including debilitating Sciatica since I was 23.
4. The biggest adjustment I’ve had to make is:
Another wow.  Letting go to what I thought my life was?  The things I valued?  Being the person I thought I was? 
5. Most people assume: 
I don't know.  Maybe they assume that I will be well soon?  That I have some bug that will be cleared up? they must think I am a slow learner, by now. 
The hardest part about mornings are:
Walking, getting some range of motion into my lower limbs, and checking energy to see if my anticipated plans for the day are still possible.
7. My favorite medical TV show is:
I used to dream of meeting a real Dr. House, but I'm not much of a "drama show" person, because medical shows and the news just stress me out!
8. A gadget I couldn't live without is:
  My smartphone.  I have to be connected to the people I met through my illness---email, Facebook, blogging.  Plus, I can work from anywhere, when my brain works well enough for work.
9. The hardest part about nights are:
Hoping I can sleep.  Sleep has been very difficult, and I don't want to go back on sleeping pills ever again.
10. Each day I take __ pills & vitamins.
32.  4 times per day, spread out.  Plus some homeopathic tinctures.
11. Regarding alternative treatments I:
I am open to anything that will help me take back my body.  I used to hate pharmaceuticals, and I don't think now that I would be as far as I am without them.  But, I work heavily with my acupuncturist to coordinate with my other docs.
12. If I had to choose between an invisible illness or visible I would choose:
Invisible.  When I am having a good day, I sometimes forget things have been really bad for me.
13. Regarding working and career:
I have had to grow a lot, letting go of the thought that people couldn't function without me, that they could carry on with the way I wanted things.  I actually have grown quite a bit, professionally through this, and would not change learning to trust others at work.
14. People would be surprised to know:
How many problems I have with my brain.  When I mention forgetting words or names, they usually say something like, "Oh, you're just getting old", but really?  Neurologically, those are the symptoms that scare me the most, and told me the Lyme Disease was in my brain tissue.  I'm only 39, I should not have the neuro symptoms I have.
15. The hardest thing to accept about my new reality has been:
Watching my children and husband see me struggle.  I don't want my children to grow up thinking women (or ME!) are weak, can't take care of themselves.  And I have often worried about other people think that maybe don't know my illnesses, that they think I'm lazy, or taking advantage of others.
16. Something I never thought I could do with my illness that I did was:
Be open with people about what is really going on, and being able to reach out to others.  I never thought I would want to be an advocate
17. The commercials about my illness:
Don't exist.  One day they will, and doctors will have more education about Chronic Lyme Disease.
18. Something I really miss doing since I was diagnosed is:
Be physically active
19. It was really hard to have to give up:
Gluten, and sugar.  In fact, I'm working on this a week before posting, and I seriously doubt I have made much progress in the "sugar" area. 
20. A new hobby I have taken up since my diagnosis is:
Blogging!  What an amazing outlet.
21. If I could have one day of feeling normal again I would:
Spend the day at Disneyland, walking forever, eating garbage, and having a great time with my family!
22. My illness has taught me:
To be more compassionate, and respectful of others. So many people struggle, and being a judgmental bitch, while hilarious, is taxing.
23. Want to know a secret? One thing people say that gets under my skin is:
"Oh, that happens to everyone, you're just getting old."  The last time 39 was old, we didn't have plumbing.  Or the wheel.
24. But I love it when people:
Try to include me in everything, even things they may think, or know, I can't do.  I like having a choice to try or not.
25. My favorite motto, scripture, quote that gets me through tough times is:
When my husband says, "I got this".  Or "It is what it is".  or a bunch of other sayings that are full of bad words.
26. When someone is diagnosed I’d like to tell them:
Take it one step at a time.  Do your research, pick what you want to start and take it easy.  But most of all, don't give up.  Reach out to people that can help you.  Find others struggling with similar things.  Take control over what you can, and remember that you can tolerate much more than you think you can.
27. Something that has surprised me about living with an illness is:
I'm happier with many of the life changes I had to make, even the ones that were the toughest.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Believed me.
29. I’m involved with Invisible Illness Week because:
I have had the opportunity to reach out to others going through similar things.  I would like to think that I have helped them, given them some ideas or inspiration.
30. The fact that you read this list makes me feel:
Accepted.

Here are some people that have inspired me over the past year +:

The Bloggess---she struggles with depression, among other things
Christine Miserandino----the author of The Spoon Theory,a MUST-READ for people with invisible illness, and those that want to understand them.

Friday, September 7, 2012

The One Where I Try To Learn Something New

With me, my Lyme Disease is heavy in the neurological problems.  For instance, I can't learn something new like how to put my IKEA purchase together in 485 EZ steps.  I can't seem to process information enough to discern what I am actually supposed to do with the information. Reading legal docs?  Not happenin'.

I suppose it's a lot like being a complete dipshit.  Without the drool, though.  Usually.

So, Sky King signed up to be the photog for our son's Midget Football team.  No, our son is not a midget, but he plays in a league that names 14 year olds after little people.  I know, I know.  Maybe it should be the Little People Football League?  But then, people might think it's a bunch of Fischer Price toys out there. Which would be even weirder than a bunch of 5 foot ten inch midgets. 

Where was I?

Right, learning something new.

To upload some of the photos, I can do one of several things:
  • (Oh, bullet points, I have missed you so!) 
  • Download them to a disk, and pass it to someone at football that gives a shit
  • Upload them, one by one, to the Facebook "Like" page (Hint:  NOT happening)
  • Figure out an amazeballs way to put them all together, then upload that wonderful project in all its glory, to the amazement of dozens, becoming a legend
I decided on that last one.  Which meant that I had to figure out how to do that, outside of Microsoft Word, the one program I knew before I grew stupid.

So I perused, searched, travelled through the internets, looking for the perfect program. First, I searched, "online photo collage free upload Facebook". You may notice I don't put my words in the right order.  I'm not sure it matters, and I certainly don't care. Fuck correct order.

I tried out Photospills.  Problem?  I can only do one, there seems to be no way to add words, and I would have to pay for it to truly use the features I want to try out.  That was a 10 minute download I'll never get back.

Then I found Smilebox.  Which is NOT about happy vajayjays.  :::disappointment:::

What it is, is malware.  It uploaded some shitty extra favorites toolbar crap, and then when I figured out how to remove it, it did it AGAIN.  So I had to give it to Sky King, for him to fix.  Grrrr, malware.   And, it changed my start page.  Sneaky bastards.

Then, I watched most (baby steps, people!) of a YouTube video on how to work Picasa to do a collage.  Got bored.  Also? No text options.  :::sigh:::

Then, I thought, maybe I will use Word.  I know how it works.  But I realized I would not have good blog fodder.  :::bigger sigh:::

So back to the Google, I go.

I then went to Shutterfly, which I have used to make albums that are awesome.  I couldn't find what I needed there, and proceeded to expose my children to more bad words than Sky King thought possible.  I don't do well when things are difficult, irritating, or not going my way.  So, onto a new search:  "online scrapbook page sharing".

PiZap.  Holy mother of all that is full of photog goodness!  I uploaded the photos, quick as snot, put a fancy boarder on, filled in some text, then BOOM!  Happy me.





The neat thing about this photo is this:
Sky King was playing with the camera that we still don't know how to use (gimme a break, it's only been 3ish years), and we had it on sport mode, which takes a bunch of photos quickly.  He captured the entire play from leaving the pocket, throwing, a great catch and the touchdown signal from the ref!  Couldn't have planned it better. See why it had to be spectacular?

Phew.  My brain hurts.  I feel bad for the guy that called me in the middle, asking if I had "just a minute" to hear about Prop 32 or some such shit.  I usually listen, but I said, "Sorry, it's late in the day, I can't handle any more info or my head will explode", he responded with, "Vote no, then". Smart man.  Done.

After it was all said and done, some awesome person I'm friends with uploaded all his stuff to photobucket through Facebook, which probably does what I want.  Whatevs, asshole.

I figured something out, no one was unnecessarily stabbed, and apparently I'm voting "NO" on something important.  That's a big-ass WIN in my book.



Monday, September 3, 2012

Laborious Bitching. And BBQ.

In a perfect world, the worst weekends would be the three-day variety.  Because all the other ones would be four-day.  But with no kids.  And wine by the box by the case.  Sorry, my redneck peeked out just a little.

But I digress.

For this particular Labor Day, I celebrated by driving with the fam and our favorite sidekick to see some family in Far Far Away.  This involved $150 in fuel, and 3 potty breaks.  Also, $43 in snackfoods.  And 294 threats to "beat your asses if you don't stop". And 4920 pounds of cargo. Cos that's how we roll.

The weekend was chock-full of highlights:

We ate split-pea soup at the Mecca of Soup (Pea Soup Andersen's) along highway I-5.  Or, "the five" as the so-calis will say.  But they are wrong. Anywhoo, most of the food was mediocre, served by an angry uni-brow with a woman underneath it.  But the soup?  Monkey Boy and Sidekick were in heaven.  And Princess found a gummy alligator that had to travel along with us the rest of the way, at least until she got hungry again.

MB and Sidekick, being Spazzes.


Sidekick was convinced to do the Truffle Shuffle in the middle of the dining room at the restaurant.  Maybe that's why they gave us Uni-brow as a server?

Then, we had a fun-filled weekend with family and friends, old and new. We wine-tasted wine-gulped our way through the county, with designated drivers, and bangin' discounts that would make the V-est VIP salivate. (Thanks, Ev!)

The Princess made new friends, who also love 4-leggeds as much as she does, and they all enjoyed collecting eggs, and dog nibbles, and pockets full of doggie slobber.

Monkey Boy and Sidekick were coerced/threatened/swore at to do dishes (their Labor, my Bitching, which is labor enough, I must admit), and it only took a Congressional Proclamation and slight bodily harm.  Bravo, us! And, the boys only got thrown into the pool fully clothed once.  Mostly because the menfolk got tired with the first go-round.  And the boys had a Sharpie-filled retaliation planned.  Sky King survived, mostly.  He still isn't speaking to me, for not protecting him.  I keep telling him, 8 pm "naps" are begging for consequences.

In true American fashion, several people worked hard to chip away at excessively pink livers.  Once again, Success!



 And me?  I managed to survive with few medicinal assists, and only a smattering of excessive naps.  Which once again gives me hope that things will get better, some day.

:::sigh:::

To dream, perchance to binge-drink.