Sick Of Sick, Part II

Last time we chatted, I was poised to gulp date rape drugs, all in the name of possibly wetting the bed.

I gave my usual donation of massive amounts of cash, as well as some vials of blood.

Later that day, Dr. Lyme called.

Dr. Lyme: I was thinking.  I want to change your antibiotics from what we talked about.  I would rather see you take something that will fight both the Lyme, and the Bartonella. So, I'm thinking Rifampin, and Doxycycline.
Me: Okay.  But Doxycycline is the one where I can't be in the sun.  And it gave me a rash last time.
Dr. Lyme: Yes, you are right.  But it is the best drug for what you are fighting, so I'd like to try it for a week of two, see if you can tolerate it this time.
Me: :::harumph:::

I go into my Costco later that day, and meet the Pharmacist with Nads of Granite.

Have you ever had a pharmacist ask what your problems were? Me neither.

Me: I'll take a consult, I haven't had one of these.
Dude: Okay, step over to the consult window.

Pharmacist: Ms. Walker? Okay. (He pulls bottles out of the bag, reads labels.) Oh!  This is you!  Yeah, some weird stuff came in this morning, and I was wondering what the deal was, then it was canceled, and even weirder stuff was called in. Wow.  What are you fighting?
Me: Chronic Lyme Disease. (Pharmacist grimaces)
Pharmacist: You were the one eating all my Z-packs before, right?
Me: Yep.
Pharmacist: Wow.  You keep fighting. Getting better?
Me: Stopped getting worse, so there's that.
Pharmacist: Yeah, that's a drag.  So here's the deal. See the color of these pills? (Shows me the Rifampin, which is a blood red capsule) Get used to it.  It will color your urine, feces, sweat, saliva.  You wear contacts?
Me: :::shakes head:::
Pharmacist: Good.  It will tint your contacts. Okay, good luck, fight the good fight!

A weird, yet refreshing, experience.

So, I can no longer be in the sunshine, in the Central Valley of California, in the middle of summer.  Back to hippy skirts and flow-y shirts that cover me arms to my fingertips.  Which is a great look when you are 5'3", and slightly above your goal weight. Add this all to the floppy hat, and I'm thrilled I'm not single any more.  Now if Sky King begins to lose his vision, I'm set for life.

Add this to the other drug, that will tint the inside of me.  That may come outside of me an alarming shade of red.  Check.  Oh, and this Rifampin?  Typically used for TB.  And Meningitis.  Swell.

credit: istock

I am officially sick of being sick. Because before? I was pretending to be sick of being sick.  Now I'm not joking.

What has happened to you lately, that has made you want to stab random people in the neck?

Sick Of Sick, Part I

Dr. Lyme and I had a pow-wow the other day.

He's unimpressed with me lately.

Dr. Lyme: How have you been feeling?
Me: Not great. I've turned serial apathetic
(I didn't really say that.  What I DID say is that I am blah, don't want to be awake OR asleep, don't want to participate in stuff, want to nap all day, can barely muster the strength and desire to overeat desserts, etc etc etc)
Dr. Lyme: Ah.  When did that start?
Me: About 3 weeks ago.
Dr. Lyme: Okay.  Let's see. How is your joint pain?
Me: It seems to be getting worse. I've had to take more pain pills that usual.
Dr. Lyme: When did you notice that?
Me: About three weeks ago.
Dr. Lyme: Mmhm. And how are you sleeping?
Me: Good for the first 4 hours, then I wake every 45 minutes to an hour, til 7. Then I want a nap around 10.
Dr. Lyme: When did that begin?
Me: About three weeks ago.
Dr. Lyme: So.  I think it all comes down to you not getting enough quality rest.

(This has all become apparent to Sky King and me during the course of this discussion. This is common for me: what remains elusive during hours and hours of soul searching always becomes crystal clear when you verbalize something in front of someone that makes $200 per hour. You too?)

So.  I'm already on Ambien for sleep.  a half dose worked for the first couple weeks, then I had to increase to a full 10 mg pill.  Dr. Lyme is thinking that, since I cannot sleep without it (AT ALL, it turns out), I need something different.

But he's not a sleep guy.  He wants my primary, or my sleep doc, to handle it.  He is thinking that a drug, Sodium Oxybate, would be a good choice.  It's liquid, and I would take a half-dose at bedtime, then the remaining bit when I wake in the middle of the night.  Sounds fine. Whatever.  I just want to SLEEP.  Without the sleep, I won't get the better.  Without the better, I won't be able to to keep from stabbing people in the neck with sporks.  Vicious cycle.  So sleep drugs. Check.

We got through the rest of the visit, with him changing out my antibiotics.

I left, and went straight to Dr. Google.  Dr. Google has assured me that Sodium Oxybate is perfectly safe.  If I am a mixed drink in a bar, held by an unsuspecting future rape victim-Sodium Oxybate is known "in da 'hood" as GHB.  The latest "date rape" drug.  You know, because roofies are sooo 2004.

Side effects include bedwetting, difficulty falling asleep, and dry-humping strangers in seedy bar bathroom stalls.  2 of those are especially alarming.  I have a REALLY nice mattress that I would hate to "soil".  And, the whole reason for taking the drug is TO SLEEP.  Seriously, people.  As for the third? I just won't sleep in fishnets and a tube top, and I should be good. 

Stay tuned for part 2 of the the exciting Dr. Lyme visit.

Princess For Sale

Will consider all offers. 

When All Else Fails, Make a Permanent Change You May Regret

What do you do when you suffer from unrelenting pain, combined with a complete 180 degree shift from how your life used to be?

I say, mark your body permanently, with a massively visible picture, that may or may not burn for 4 days.

Now, before you get all, "hey, don't you run a professional business that relies on people having faith you are an upstanding citizen" or "tattoos are a permanent reminder of a fleeting desire" on me, I thought about this for almost a year.

I knew I wanted a spoon, to signify Christine Miserandino's Spoon Theory which is the very best way to describe invisible illness to people, and truly encompasses how it feels to have a debilitating illness when I look perfectly fine.

I knew I wanted it to have a butterfly because they are trendy I have no imagination they signify invisible illness and the transformation we go through.

And since they haven't invented glittery tattoo ink yet, I let my tattoo artist use his imagination and create something unique.

Midlife Crisis: 15
Lyme Disease: 1

Anarchy On Wheels

Sky King is a passionate man.  Well, passionate about some things.

Boobies, for one. 

Or two.

He LOVES 'em.

But  I digress. 

Few things bring out his limitless passion than a good car washing.

He is OBSESSED with washing my car-the Swagger Wagon.  Which is insane, because I am a horrific slob.  Like, monumentally foully exquisitely gross.  Sky King has called my vehicles Anarchy on Wheels.  I don't think he means this in a good way. He even thinks the ALL YOU CAN WASH Autopay option has VALUE.

But I always have what I need. In view.  By my braking foot.

Anywhooo.  His favorite time to wash the car is right before a big trip. I will be 20 minutes from ETD, and Sky King will say, "I'm gonna run and wash your car, it'll only take 20 minutes".  He lies. And he always wants to wash it as the worst times.  Especially a trip up the highway through the rain, sleet and snow.  Or through swarms of squishy bugs.  And it takes him DAYS, people, DAYS.  I now know why.

His meticulousness knows no bounds. 

He pays $5.99 for a Quick Quack wash-his favorite washery.  Sometimes he will go to Bubba's, when it's more convenient.  But it's $6, and they don't give you the dash wipey.  And, the unlimited vacuum at Quick Quack?  Dreamy. Now we have a Quick Quack closer to home, Bubba's has been suffering economically.  That's what they get, for ignoring The People's desire for Unlimited Vacuum.

I was his wingman (Wingwoman?) today.  We got in line.  Paid the money, pulled in.  Right after the chick that didn't understand "put car in neutral" but that is another story.  We went through and enjoyed the technicolor soap shower, marvelled at the brushless glory. We pulled into the vacuum area, I had my instructions.

As Sky King dried every available surface, removing all remnants of moisture, I was expected to assist. I was handed the wipey, given exacting instructions.  Filth was not an option.

I worked it.  Wiped.  Scrubbed.  Removed all manner of wrappers, debris, and detritus. Vacuumed the seatbelts (no, I'm not joking). Climbed into the back to get the drippy marks. Used my newly-manicured nails to remove gum/milkshake/jujubee/frooty snack debris from the cupholders. Sprayed with the squirter, wiped with the special wipey. I broke a sweat, pulled a hammy, chipped a nail.  But it was all for naught.

I failed. I did NOT get the rear-view mirror.  I missed the inside of the driver window. A portion of the dash remained dusty.  I failed to extract the crumbs from the third row far left seatbelt clicker crevasse. I missed $.37, a pair of tweezers and a DS game.

Sky King looked at me the same way a dad might look at his little pumpkin after getting the latest and greatest Boobies Monthly issue, with his daughter front-and-center.

I hope our marriage can recover.

Half A Cocktail Too Much

Like most people, I am constantly growing, learning new things.  For instance, I (along with my Girl Scout Troop) learned some basics about watercolor painting that I didn't previously know. Nothing earth-shattering, but I just heard a new perspective from someone who knows more about art than I do. Which isn't saying much, but still-I learned something new. 

Also, I recently learned a lot about psychotic episodes.

That was a lesson I could have skipped.

Remember, if you will, that I am on Cymbalta.  It's an antidepressant, but also helps with Fibromyalgia pain.  It helps TREMENDOUSLY.  But, like all medications, there are potential side effects.  For instance, it makes my mouth dry.  My solution is that I carry water almost everywhere I go, and I am persistently hydrated.  Not a huge problem for me. 

The insert that comes with the pills warns against using with alcohol.  I figured it was more like a pain pill, where alcohol just kind of gives it a boost.  Like a little kick, if you will.

This is NOT the case.  And I have learned it twice.

I know, you are probably shaking you head, all, "what a dipshit, she drinks with all the problems she has?  What an idiot.".  Hell, I drink BECAUSE of the problems I have.  It's called self-medication. It's a nice way to take the edge off a rough day.  Or to forget my body hurts ALL THE TIME.  Judge me if you want, I don't really give a two shits. 

So anyway.  About a year ago, I had a social engagement with a few other couples.  It was my turn to not be the driver.  And Sky King used to give me grief if I didn't use my "Passenger Pass" to its fullest extent. 

So this particular night, I used my pass.  I used, abused, and annihilated my pass. Fun Aimee got down with the pass, and boogied til her feet were as sore and red and chafed as the my thighs at a Weight Watchers Marathon.

I didn't sleep well.  Which made sense somewhat, because alcohol is a depressant and actually disrupts sleep,....blah blah blah.

The next day, I was exhausted, and most of the previous night was a big black blur.  As in, "Honey, call those people and apologize on my behalf because I'm sure I was embarrassing".  And I typically don't get this hammered.  Tipsy, yes.  Drunk even. Not obliterated.  Not that I didn't go to college or anything, just that drinking in massive excess isn't really my thing.  Not often, anyway. Anymore.  Stop judging.

So, I tried to nap.  I was exhausted, and just didn't feel quite right.

As I lay in bed, I noticed that I was twitchy.  I could not lay still more than 20 seconds without a limb moving involuntarily.  And I could not sleep.  What I was able to do was lay there, twitching, partially unconscious, while crazy shit went through my head.  CRAZY crazy shit.  Things I can't even admit to my husband.  It scared the absolute shit out of me, and only after I Googled "alcohol and Cymbalta" did I calm down enough to not insist on being taken to the ER.

Then a friend came by, that new a lot about my health situation.  I told her what I was feeling, and she looked appropriately horrified.  Not as in, "holy shit, I'm backing away slowly", but more like, "Wow.  I feel incredibly bad for you".  Turns out, she tried the same medication, and had the same reaction to a couple margaritas.

Since that time, I have slowly been able to enjoy a glass of wine again.  Sometimes two.  But that is about it.

Old dogs, new tricks?  I got this.

About a few months ago, Sky King and I went out, for a much-needed Adult Night.  We went to a bar to see a friend play in a band.  We stayed out late, enjoyed some much-needed freedom.  And I sipped 2-and-a-half Seabreezes (cranberry, grapefruit, and vodka).

They were strong.  But I was dancing, chatting, socializing.  And they snuck up on me. They were some stealthy mother fuckers. By the time I realized I was in the danger zone, it was too late.  And the next day we were having people over to swim and BBQ.

Once again, no sleep.  And during the night, my brain heard horrible things---dogs snarling and ripping at each other, children crying for help.  Over and over and over.  I even checked on Princess several times because I had envisioned her entrapped in some sort of rope-y contraption, and I was sure I would find her lifeless body hanging from her bunk.  Each time, she was fine, sleepy breathing sounds coming from her nest.

Two things got me through: 1) the understanding that my brain was playing tricks on me, and 2) Sky King would hang with me if it got too much to bear.

I made it through the night, told him in the morning.  He took good care of me as I twitched and shook my way through the next day.

I told my mom, and she said, "Oh.  Sounds like a psychotic episode."  Yep.  Specifically, substance-induced psychotic disorder.  A real treat, I assure you.

Now let me just be real for a moment.  I have definitely gained a certain amount of respect for people suffering from mental illness in the past year and a half. Depression is no fucking joke.  I'm working through it.  And as far as the psychotic episodes? Yes, I brought them on myself.  I didn't follow directions.  I fucked up.  But wow. 

I can't imagine how things would have played out had it been worse.  Had I been home alone.  Had I listened to my own brain, that thing that usually steers me right.  Okay, right-ish.

The What-ifs are hard to process. 

Hopefully, I have learned.  Only time will tell.

Three Sides of the Same Coin

While sitting in a very interesting training, my mind began to wander, as it does.  I was thinking about how "things used to be" and the differences from now.  Part of the thoughts centered around my quest for relief from what ails me; a sincere desire to get back to the old me.  Now don't get me wrong; I don't want to go back to the lifestyle I once had, flitting from obligation to obligation, falling down exhausted each night, having people remark that hearing my schedule makes THEM exhausted. No, what I want is some part of the energy I once had, and the ability to react to things that sometimes require my complete energy and focus.

Not to mention the ability to completely ignore a "wet floor" sign, rather than go forward with trepidation, simultaneously watching for wet patches and scanning for little old ladies to support me if I start to fall.

It occurred to me during these daydreams that there are three distinct "Me"s.

Fun Aimee-
This used to be reserved for the Aimee that had had a wee bit too much to drink.  She's likely to speak loudly, and with passion.  She might fall down, dragging some unsuspecting soul with her.  She is ALSO likely to flail about.  During this flailing, she is likely to hit a girl in the face, and remark, "Oh, sorry about your FACE!", then falling into a fit of giggles while her friends try desperately to keep Aimee from getting her ass beat. (Good gracious-it's truly amazing I made it this far in life without being beaten to a pulp.)

Fun Aimee also loves to hug everyone, to sit on laps of cute boys (cue Pearl Jam music and red Solo cups full of Natural Light) and to generally be the life of the party, even when the party ends.  Good thing Fun Aimee doesn't know the party is over, because Fun Aimee doesn't like shit that makes her stop having fun.  That's the subtle joy of Fun Aimee-there's no stopping that fun train.  Well, a trip to the bathroom to vomit might slow things down a bit.  But one shot of Goldschlager, and she's back on track. (Who would do shots of tequila after vomiting? Eeew.)

Nowadays, Fun Aimee consists of a pain pill and exactly 1.75 glasses of wine. Too little wine and she passes out falls asleep, too much wine and she gets mouthy and will pretty much alienate those she loves.  Also, 1.75 glasses of wine and a pain pill is the ideal prescription for a very happy Sky King. Ambien Aimee would come close for a while there, but Ambien Aimee became reminiscent of Jump-on-the-back-of-a-cop-on-the-street-just-for-giggles-Aimee, and Sky King has grown weary of her antics. WEARY.

Modified Aimee-
This is me, minus the pain pills and wine. I am at about 10% capacity, which would be about 30% for normal humans. Remember, I used to do way too much with immeasurable amounts of energy, so comparing me now to how I used to be is quite dramatic.

I only work about 12 hours per week-anything more than that and I am a zombie.  People have remarked they can see in my eyes when I lose my energy, that the look is obvious.

I also have to save a couple spoons for helping Monkey Boy with homework.  He has some issues that make following directions a challenge.  Some day, his wife will accuse him of not listening to her, and she will be right. He won't ever know it, though because he'll be walking around, saying ".....uh....what?" to everything.

I have had to learn to relax, which in and of itself nearly killed me. Now, I get the whole concept, and I end up on Friday afternoon, all, "Well, what do we have going on this weekend?  Nothing? Again?  Nice...." I do have to get out of the house still, or I will completely explode.

What I would like, when this Lyme shit is all said and done is this:
I want to be able to work part time, spend time with my family, and still have the energy and/or spoons to have shit go down, and I can step things up to save the day.  Really, is that asking too much?  I'm going to call that Aimee, Aimee 3000.  New and Improved.  Not as much swagger as Andre' 3000, but not nearly the potential for felony convictions as Fun Aimee.

It seems like a nice compromise. One I can live with. I hope.

The One Where Sky King Totally Misunderstands Social Cues

So, we were out to dinner.  The kids had been demoted, happily, to the arcade filled with Claw Games (I checked, Princess definitely could NOT fit in this one), and Sky King and I were enjoying a modicum of silence.

As much silence as we could enjoy inside a restaurant that schleps 95 kinds of burgers, and sings "Signature" birthday songs in your face when you age.

It was bliss-ish.

We had ordered, chatted with our appropriately perky server, been carded-it was looking to be a good night.

There was a lull in the conversation, each of us enjoying our own grease-scented zen moment. Then the conversation started:

Sky King: :::whispering conspiratorially::: So.  Do you think he actually killed someone?

Me: ...........................................ummmmm, who????

Sky King: Our server! (still whispering, in case the homicidal maniac bringing us our Rum Face Punchers goes psycho, apparently)
Me: :::pensively thinking.  Looking confused.  Time passes:::
Me: :::uproarious laughter:::  Dude!  That's a MOLE!!!!!!
Sky King:  No way.
Me: Way.  You need glasses.

:::Server walks by, balancing a tray full of mile high choco-cream-goo with 9 thirsty-Thursday Beer-o-ramas, smiling his winning, I-live-on-tips smile:::

Sky King: Holy shit, you're right. Wow.


Sky King had seen something in the corner of our server's eye.  Apparently, it looked like a tear drop tattoo, indicating he had shanked someone in the joint.  Instead, the server had a skin condition:

Indicators of horrifying violence

 

Facial anomaly.  NOT teardrop tattoo.  Really.

In other news, I will be collecting funds.  First, for a Kevlar suit in case Sky King accuses more people of being thugs.  Next, for Lasik.

On Healing

Being ill usually has some sort of followable cycle.  Getting sick, being sick, getting better, well. Done. It turns out that when you have certain invisible illnesses, like Chronic Lyme Disease, things are a little trickier.

With normal illnesses, you know when you are well. Sometimes, your doctor will tell you, "When the labs come back normal, we will know you're in remission".  Or maybe, "When you stop itching, you aren't contagious anymore".  Or even, "the absence of the horrific odor means the infection is clearing up".  All of these seem fairly logical, self-explanatory.  However, we patients rely on some sort of bar to be set, some series of accomplishments, to know we are well.

Relying on our inner voice doesn't seem to play into it with Lyme.

With Lyme, docs are a little different.  Most of the ones I talked to (all THREE.  Which is actually a lot, because very few docs treat Chronic Lyme-there's only 2 in the Northern part of CA that are within 3 hours of me) have a very strange set of achievements:

• Symptoms need to be gone, or significantly diminished
• Then wait several months, continuing to treat the infection
• Then suffer some sort of major upheaval in your life that would normally put you into a tailspin

Huh???

So, in the "moving forward" part of my life, I have gotten some energy back. Which means I have filled up my calendar like a fat man at a gravy buffet. Which means I have struggled to keep my head above water.  It's what I do-get sick, chill, feel well, over-do, get sicker.  Lather, rinse, repeat.

So I've been taking a break from being me. It's been tough, what with all the opportunities to be batshit crazy jumping in front of me.

But if I am perfectly honest with myself, my pain is ssssssllllllooooooowwwwwwwllllllllyyyyyyyy getting slightly more tolerable, when I'm not overdoing everything.

Also, I'm not twitching QUITE so much.  When I sit still at night, I actually NOTICE when I twitch, which means it's not happening so much that I am immune.  Progress, I say.

And, I've been able to tolerate things that make me feel worse, with the intent of getting better-hot tubs, for one.  They make me ache.  ACHE like a motherfucker. The whole next day, plus some added angst-y limbs tossed in. And this is all good.  I swear.

SO, all things considered, I can still tolerate massive amounts of antibiotics, without horrific side effects.  And I can abuse my body with heat, and survive.  Sounds like win-win to me.