Today's Post Brought To You By The Letters F and U

I'm mad.  Like, stab-members-of-the-CDC-in-the-eyeballs-with-Chinese-throwing-stars-while-simultaneously-burning-down-the-homes-of-all-their-loved-ones kind of mad.

Typically, I'm more, yell-profanities-and-make-an-ass-out-of-myself-through-bad-behavior mad. 

But I'm done.  DONE.  Stick a fork in me.

Yesterday, after much fight, I lost a big battle.  The war is not over, but I am sitting around stewing in my misery, sad, crying, frustrated.

Here is a summary of what Lyme disease (contracted in the mid-80's) has given me:

• constant joint pain
• somewhat constant muscle pain
• an almost regular limp
• Skepticism---imagine someone with a debilitating illness, yet they look fine.  Healthy, maybe a little chubby (OK, A LOT), good coloring, keeping her hair, etc.  But she tells you she has this awful disease, and she can't work much, nor commit to much.  And, she will likely act like a total flake, committing then forgetting.  But she blames it all on a disease that has no mainstream support or treatment.  Yeah, THAT.  I can see it in people's eyes.  The ones that knew me before are less skeptical.  But new people, it's hard to open with, "Hi, I'm Aimee.  Don't bother telling me your name because I have a weird disease that makes me depressed, in pain and forgetful. Nice to meet you."
• 4 (and counting) "Temporary" handicap placards, one right after the other, waited in line for at the DMV, every 6 months
• touch sensitivity, so when people lean on me, hug me, jokingly tap me, or pretty much any other contact, it has me saying "ouch" or worse (not the greatest, when you're a mom of kids who like to snuggle, and a husband who likes to "snuggle" too)
• a veritable potpourri of over 40 different pills to take throughout the day, set by a timer on my smartphone
• Regular doctor appointments-I see my Lyme doc monthly, my therapist at least weekly, my acupuncturist at least monthly (more when we can afford it), the pharmacist every couple weeks, my primary a few times a year unless things get really bad, and various people for consults (surgical, etc).  When I'm not at an appointment, I am working on scheduling one, filing forms to insurance reimbursement from one, or appealing the denial of one claim or another
• I avoid people---I have become withdrawn, anti-social, and irritable.  
• I am tired.  Not, need-a-nap tired.  But fatigued-lay-on-the-couch-and-barely-schlep-to-the-bathroom tired.  It's different, and it's exhausting
• Planning---whenever the rest of the family wants to do something, I have to think about whether I can, and what I need to do, to be able to do something.  Cross Country Meet? I need a chair, shade, and possibly full coverage for my skin, in the sun, for several hours.  A weekend away? I travel with 3 inch memory foam, a wide range of clothes, and extra medication so that if I have to be around people for longer than a couple hours, I can hang with the extra stimulation.  Lord help me if I'm light sensitive that week.  Disneyland? I have to borrow a mobility scooter, and after 4 hours, I'm a wreck.  Basically, my Lyme disease needs tons of accommodations.  
• Pity-people I love, that used to rely on me, respect me, and expect great things from me now have lots of pity.  I have less invites than I used to, and it's hard to explain to people: "Please still invite me, even though I usually say no".  It sucks, having a friend that takes so much work, ya know? But it also sucks being left out.  I can't win.
• Side-effects-at any given time, my meds (which change monthly, sometimes more often) cause me to be sun sensitive, alcohol sensitive, angry, grouch, bloaty, feeling slightly drunk, dizzy, spacey, imbalanced, and incapable of losing weight.
• Also, I have to detox---Lyme disease causes some nasty side effects WHEN THE TREATMENT ACTUALLY WORKS from which I need to detox-dry brushing, using a personal sauna, lemon water all day, and Epsom salt baths are a few of the things I have to stop living my life to deal with.  And, I should be detoxing daily.  A good friend detoxes for over an hour, EVERY DAY.  It's a fucking part-time job.
• I've lost much of my cognitive function.  I forget names of people, offending them at every turn.  I forget appointments, I forget obligations, birthdays, anniversaries, etc.  And, the kicker is, that used to be my THING.  I was thoughtful, planned elaborate surprises, remembered to get everyone to sign the card, blah blah blah.  Now, I can't introduce people without looking like an ass.  And that's one of the least annoying things about my memory loss.  How hard do you think it is to explain to your staff why the phone got shut off?  Twice?  Not very confidence-building, I assure you.

The list goes on.  Ironically, I can't think of anything else right now.  HAHAHA.

If you love me, know me IRL, care about me in any way, do this ONE THING for me.  Watch this movie:

This is Under Our Skin, a documentary about why I can't get the treatment I need.  Last year, we went out-of-pocket over $12,000.  I am one of the lucky ones: I found a way to HAVE that much to spend.  Not everyone is this lucky.  To date, the biggest killer of people with Lyme disease, right before cardiac issues and stroke, is SUICIDE.  People give up.  They feel like they have no hope.  I get it.  I really do.  Luckily, I have an amazing team of people that hold me close, check on me, keep me in their hearts and prayers.  And, I have a job still.  I don't work at it much, but I have the distinct luxury of being a business owner, and having a ROCK STAR husband that has picked up my slack at work (along with some amazing people AT work-you ladies and the BOMB).

One last favor--- share this movie.  Share it with the people you love.  Share it on social media.  Share it with your favorite congressperson (is there such a thing these days?)  Lyme disease is in ALL 50 STATES, and the CDC recently admitted that annual new cases number at around 300,000.  I heard a person with HIV once admit he was glad he didn't have Lyme disease.  Can you imagine a disease that is degenerative, that slowly (sometimes quickly) takes everything away from you, all the while the agencies that should be supporting you are telling you it's all in your head, doesn't exist, or is not treatable?  And this isn't just happening here: Europe, Australia, New Zealand, and other countries and continents are having the same problem with identification, treatment and acceptance. 
But, I am dejected, ignored, dismissed by the IDSA and the CDC, who won't acknowledge what I have, or work on an appropriate treatment.  So, I see a doc that can't take insurance for fear of scrutiny, and my treatment is WAAAAAAAY outside the scope of what is "acceptable" in those damn IDSA guidelines.  Having friends and family support you is HUGE, I know people that don't even have that (who would fake this? Who would pick this life???).  But without aggressive treatment, I don't see how I will ever get into remission.

Remission.  Yep, not CURE.  You see, when Lyme disease has been spending a couple decades burrowing into your tissues, heart, muscles, and brain, remission is the hope.  And there isn't a simple test---it's more, "can you live with this crap?"  "I guess so"  "Congrats!!!  You're in remission!!!" 

GAH.  MAD MAD MAD. 

I promise, I will work hard to do a funny post, soon.

Kisses (and gentle hugs),
Aimee

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.

Sorry. It's Been Too Long. Too Too Long. My Bad.

I was recently told by one of my most loyal readers that I only posted 6 times in July.  6.  SIX!

I feel horrible.  So to make it up to you, I am going to do my very very best to inundate you with a ton of amazing new posts. 

They are guaranteed to be filled with bad words, incredibly graphic descriptions that will curl your toes, and/or disgusting health information.

You're welcome.

Here's a teaser:

I just cycled my meds (that's a technical term I totally just made up, which means that I changed out some of the shit I gulp each day.  Typically, this involves getting used to the new drugs, and the side effects are pretty EPIC.).

I was put on Rifampin.  This drug is usually used for TB and Meningitis. And, it's only $85 per month! Awesome. The pills are bright red.  Why?  So that when you pee, you are horrifyingly alarmed. 

Child Development Peeps:
Yellow and red make = Orange!

Orange pee.  Like Tang, but no astronauts.

HA!  I just said "ass". 

More on my ass, later.

In the meantime, send me all your granny shawls, full coverage skirts, and dowdy hats----it's Doxy Time! (Didn't Hammer do a song about Doxycycline?  Doxy Time......My-my-my-my Lyme hits me so hard.....Hammer, don't go in the sun......)

Is there a way to make cute musical notes appear here-------->  ?

Anywhoooo.

:::keeping day job:::

I just got back from back-to-back camping excursions. And I survived.  Despite the acclimation to new drug effects  (affects?) (Sorry, my Lyme brain is extra broken lately) ( I could look it up, but I'm feeling NOT-ish right now).  And the less-than-warm reception my snoring earned.  Incidentally, no one likes people that show off by staying up past 9 pm, alright?

And?  When people asked why I wasn't drinking, I had a FAB time telling them:

*I'm more of a pill-popper
*Alcohol fucks with my anti-psychotics
*Dude.  It'll chill my heroin buzz

Most people stopped talking to me.  Which is why I went to bed early.  And because I'm a pussy.

But, I saw Dr. Lyme recently, and he had some good-ish news for me.  Except that I'm starting menopause early, and I should stock up on extra-absorbant pants. (for the sweating, you pervs.) Why don't pants get ratings based on absorbancy?

I'm getting ahead of myself, and I have shit to do.  Like, chill.  And maybe watch some TV.  I missed TV. Or, I at least missed the couch near the TV.  Same thing, right?

More on all this, later.

Kisses,
Aimee

Of Robitussin and Mad Men

I tempted fate last week.  Someone was in my office and they coughed their dreaded Ebola cough and they backed up, saying they didn't want me to become any sicker than I already was.  I joked that I was on so many meds, I could lick a hooker.

Turns out, I CAN get sick.  Just not with anything massive amounts of Azithromyicin or Amoxicillin cures. Apparently, that still leaves quite a few germs.

It started Friday, with a massive sore throat, and some sinus issues.  I assumed the yellow pollen sheen on the car windshield was to blame, and went through the day, popping allergy pills.

By 9 pm on the day of my Big Event at work, I was done. DONE done.  As in, holy-shit-bring-the-car-to-me-and-I-may-need-a-hand-never-mind-that-a-forklift done. I knew Saturday would be Sofa City, so I braced for the worst.

I managed to hack, sputter, and cough my way through Saturday, and Sunday (Mother's Day).  Still, no relief. By Monday, I was officially on the injured-reserve list.

Tuesday, I realized the Lyme symptoms were at their worst, and accepted that I was herxing on top of whatever virus was using my immune system as a flophouse.   Or my body was just plain rebelling against my desire to be old-me instead of new-and-improved-do-nothing me.  I was 2/3 of the way through a bottle of cough suppressant (New! Non-Drowsy Formula, Same Toilet Bowl Taste!) and every time I coughed I screamed obscenities. But if you add in the glorious dizziness about 1/2 hour into a swig, things could not be brighter.  Except that I was running into stair banisters and doorways, not unlike high school but without the perky boobs.

To top it off, every time I would cough, Monkey Boy give me the I'm-worried-about-my-mom look.  So I keep reassuring him it's just a virus, I'm getting better, it's a tickle in my throat.  And Princess?  She's running around being Princess, which is plenty for us all, but in overdrive.  At my work fundraiser, she spent most of the night selling things that didn't belong to her as well as some that did, all for "charity".  When she ran out of merchandise, she went for the straight beg, telling people she was collecting money for "people who don't have any" and "people with Lyme Disease, because they could DIE!!!".

I pulled her aside and told her I was not dying, and we talked for a while about her fears and my health a bit.  It broke my heart just a little. But back to the sit-com that is my life.

On the upside, my DVR has never been clearer.  And I'm finally getting my money's worth on Netflix. Also I am pretty certain oatmeal isn't fattening.So there's that.

Still in the deep in the dark recesses of me, there is a little bit of old me left.  The one that wants to do, over-do, re-do.  She lurks, waiting for a moment to peek her little overcompensating head out, assess the situation, and over-work it to death.  She got her moment late Tuesday, as I perused the offerings of Netflix.

:::cue angels singing their joyous chorus:::

There it was.

5 seasons of Mad Men.

What?  You know not of Mad Men?  Well, gather up a bunch of lying distasteful drunks, play horns in the background, add drama, and there you have it. Except make it addicting to watch, regardless of how hateful everyone is. It's like Desperate Housewives, with an education.

:::me, swooning over Don Draper:::

I had heard about the show, heard about the awards, the accolades. So I jumped in, and old Aimee saw her opening. Her opportunity to work something to death. catching up on the series is a full-time job. I think I will need 3 more days of illness to finish off what's left of the series.  But then I will have to detox. Maybe a fat farm.

As it is, they smoke and drink so much in the show, I'm afraid my cirrhosis is acting up, and I am sure I now have emphysema. But it's worth it.

So tell me--when did it become inappropriate to have your children mixing drinks for you on bridge night?

Lyme Disease, Will You Please Go Now!

Instead of my usual whiny, "Ow-things-suck-things-hurt-pity-party-for-one", I thought I would....still do that.

But, as an Early Childhood person, and in honor of the late Theodore Geisel, I will do it this time in the style of Dr. Seuss.

I've got aches in my arms,
Aches in my each leg,
Aches in my joints,
And I'm wanting to beg:

Nasty pains, will you please go, now?

Whether I eat fatty or lean
and yummy crap in between,
my body just won't stop spreading.
It's biggering and biggering
And I'm kinda figuring
I need to avoid food with breading.

Globulous blubber, will you please go, now?

So I gave up the gluten,
the scrumptulous dairy,
the fatty, the sugary, the merry.
I don't drink caffeine,
all my meats are quite lean,
and I lost the numbers of Ben, and Jerry.

Awful diet restrictions, will you please go, now?

Still, my arms are growing,
my belly is showing,
my skin is a blotchy red mess.
I'm itchy and nauseous,
And even though I am cautious,
I'm squeezed into a size 14 dress.

Crummy side effects, will you please go, now?

I pay through the nose
for more pills than a junky,
And insurance hardly covers a bit.
My bills are a-piling,
and my time is spent whiling
away reading outdated shit.

Skyrocketing healthcare costs, will you please go, now?

I've got rashes and blisters,
belly aches resembling twisters,
and my hair keeps thinning and graying.
My fingers are big as knees,
My cankles, big as trees,
and my energy is wholeheartedly dismaying.

Fucking Lyme Disease, will you please go, NOW?



Thank you for your patience-I'm on a much-needed break away with my wonderful husband.  I appreciate your patience with my rants and guest posts this week.  Cross your fingers that I was able to enjoy some serious hot-tubbing this week!

A Medicine to Cure Chronic Bitch

Today, to celebrate my new diagnosis, Sky King and I drove two-and-a-half hours to sit in a stuffy hotel banquet room to listen to doctors speak to us about treatments for Lyme disease.

Do we know how to party, or what? 

Let me fully explain this, so you totally understand the measure of awesomeness our day included.

I am a football fan.  49ers by birthright.  But if I can't watch them, I will root for any Bay Area team, being a 5th generation Bay Area-ite. (Bay Aryan sounded too Nazi-ish) Which works out great, because I married a Raider fan.  Yes, it's a mixed marriage, but somehow we make it work. Now that poor, poor Al Davis, currently up for Sainthood, is gone, things may get a bit better in our home from mid-August to late January.  And the draft in April. (By the way, how can 4 million people constantly wish for the demise of one man, then the very split second he is gone, elevate him to heights even the Pope hasn't seen? Is it guilt? C'mon, Raider Nation, you know what I'm talking about. :::shakes head, moves on:::)

And like many mixed marriages, we do our best to support the other one in their respective love and adoration and/or utter contempt, depending on which side of the Bay you root. We even have clothing to root for the other person's team in case we get an opportunity to go to a game. (Lord knows you can't wear anything but Silver and Black to Oakland, for fear of death.)

This year, we got to go to the Steelers/49ers game, so of course Sky King had to get a jersey in red and white. Luckily Sports Authority had a buy one/get one deal, so he got a shiny new jersey and I got a toasty hoodie to go over my #85.

When this speaking engagement came up, we had a big decision to make:  Stay home in the warm comfort of our sectional, dining on pork by-products and processed cheesefood, or schlep over two hours (that's if there's no traffic) to sit mere minutes from the stadium we want to be in.  All to listen to science-y people talk science-y talk about a disease we wish we knew nothing about. The obvious choice was to go to the speaking engagement.  (PS, thank you, Sky King-I OWE you...)Which was complete with a $50 hotel bar lunch and several trips to the bathroom, which was suspiciously close to the TVs in the hotel.  Beers even magically appeared in Sky King's paw for each of these trips to the bathroom (which totaled 5-I think he may need a urologist...).

True love, I tell ya.

All this, so that our visit with my new doc tomorrow will make more sense. Tomorrow, we will be making some firm plans about my treatment.  Tomorrow, we will find out which co-infections I have.  Tomorrow, we will get a full picture of my health situation.   Today was reserved for learning.

We listened to the doctors, and we learned quite a bit.  For instance, I may have passed my Lyme to my children, and husband.  Because I was running out of shit to feel guilty about. Thank you, spirochetes.

We learned that treatment is measured in years.  5 being the starting point.

We learned that some of the meds that kill these little fuckers are also used to kill cancer, and malaria.  So, I am really covering all my bases. The reason treatments take so long is that the co-infections (other infections that come with Lyme, because ticks are notoriously germ-ridden whores) sometimes pierce and infiltrate the red blood cells.  And red blood cells are hard for meds to penetrate, and they are constantly regenerating, so you have to completely toxify the system to cover all the current red blood cells and to help get rid of the germs in the cells that are forming.  I'm speaking completely non-scientifically, and more than likely totally inaccurately, but trust me-this shit is serious. Those little microscopic organisms are some bad-ass mofos.

We learned that many of my problems can be linked to Lyme, and may therefore be gone when I finish treatment: fibromyalgia, chronic fatigue, Raynaud's, depression, joint pain, muscle pain, bad circulation, night sweats, bad sleep pattern, poor memory, muscle tremors, brain fog, forgetfulness, and generalized bitchiness.

Yes, I might become less of a bitch.  No, really.  REALLY! I know, right? How amazing that would be!  (Right now, many of the men that read my blog are trying to figure out how to secretly test their wives...do I know you, or what?)

Ya see, it seems that Lyme symptoms flare about every 4 weeks or so.  Which is the length of a woman's menstrual cycle.  And, hormones make symptoms worse.  So, in addition to being regular old bitchy what with the bleeding and the trips to the bathroom and the bloating and the cramping, Lyme makes it worse (Sky King was probably saying in his head, "I didn't need to spend 5 hours in a car in the middle of the playoffs for a doctor to tell me THAT").

So, it seems that a quick 5-year coarse of malaria drugs given intravenously can cure my bitchiness. Small price to pay to get me to a place where I:

• Don't scream out the window at people that cut me off
• Don't pull muscles reaching over Sky King to use the horn he obviously cannot find
• Don't have to resist the urge to stab a bitch in the eye who says to me, as I cruise through the lobby wearing my bright red jersey, "Oh! Who's playing today?" Holy fucknuggets
• Don't want to confront stupid people with their stupidity-not necessarily to help them learn better, but to prove to the world, them included, how utterly stupid they really are

I could go on.  Sky King could probably write a book.

And, since you asked: The 49ers played against the Giants.  And a shitty little man named Williams, soon to be formerly of the San Francisco 49ers, has now entered the witness protection program for his single-handed destruction of our deserved spot in Superbowl 46.

And once I'm cured? It may be hard to recognize me, what with the bitchitis all cleared up.

So here's a tip.  I'll be the one with the husband with a huge smile, and I will be walking perfectly normal, over-scheduling myself for shit I should've said NO to. And I will look uh-MAZE-ing, because I will have lost 50 pounds from the vomiting the medications bring on.

While I sit here complaining about the treatment that will most likely alleviate many of my awful symptoms, I know this blog will be read by people that have things that can't be cured.  I have friends with depression, friends with Cancer, friends with Lupus, friends with MS.  Lots of friends with lots of invisible illnesses. The irony is not lost on me. We each have our own battles, our own struggles.  Just because I have Lyme Disease does not diminish you being out of Pike's Place K-cups.  It's all relative, and we all get our time to dwell, to have pity-parties, to mourn the loss of the life we loved.

Unless you know nothing about football. Then, you can rot in hell.

Dey Put De Lyme In De Coconut...

Or, they put the Lyme in the Fearless Fibro Warrior.  Shit, now I have to change my business cards. Fearless Lyme Fibro Raynaud's-and-some-other-shit Warrior?

Sorry-let me start over.

Friday, I went back to Dr. M with Sky King.  I was very excited, because I was planning on getting a bunch of test results back. Some of them were: Adrenal function, Lyme, Candida, parasites, and thyroid.

As we were walking up, Sky King and I quickly went back over the things we wanted to ask him about. When we were done, Sky king says, "Now remember. Nothing else is wrong, there is no new diagnosis, we have to just keep doing what we're doing".

Before you get down on Sky King, let me explain. Every time I go in to one of my doctors, I am happy and hopeful that they will have some new answer, some new treatment, some new direction for us to go.  And every time, EVERY FUCKING TIME, I leave, fighting back the tears because they take these hopes of mine and they stomp them with their stupid Western Medicine shoes, STOMP CRUSH MANGLE. And then I get angry, and then Sky King wants to murder them. So, he is being pretty goddamn awesome preparing me for disappointment. He's a very even keel guy-not too many highs, very few lows. Me? I thrive on the roller coaster of emotions, so I trot into the doctor's office expectant like a kid on Christmas morning.

You see, I know my body very well.  I have a sensitive system-medications affect me strongly, I'm a lightweight. And I have spent most of my adult life avoiding medication. I don't have Nyquil around-no Sudafed, no cold meds, no flu meds, nothing. When I need something, I have to go buy it, because if I do have it, it's 7 years old. I really no my body well, and I notice slight variations.  This must come from years of working in health food stores. So when I say something else is wrong, when I say Fibro isn't my only issue, I know deep in my core that this is so. YES, I have a penchant for the dramatic. But since I began my therapy, and since I have had REAL drama in my life, I don't enjoy the stupid drama. The little things people turn into big things. I make a conscious effort to avoid this kind of drama. So I am not seeking attention when I say more is wrong. I don't know what it is. But I know, with every fiber of my being, that SOMETHING ELSE is wrong. I just do.  And each time I hear there is nothing, it's like my soul gets a little bit weaker. I lose just a little bit of me.

So I deflate for a moment at the thought of getting no news, right there in the parking lot. I steel myself, and take a big breath, resigning myself to a life of juicing and little binges I will continue to pay for, along with working at about 15% capacity of my former capacity.

We walk in, and he is running late. This is not a surprise, because he spent way too much time with us last visit, and I know people were waiting when I left. We get in about a half hour late.

He comes in, and goes through the file-standard doctor thing-they riffle papers, getting their bearings. he takes a look at the papers I brought him-all my UC Davis records from the past year and a half.
He says, "OK. Let's look at the test results. You did the adrenal test, and here are the results. Do you do shift work, or is your sleep cycle disturbed at all?"

Wow-YES my sleep cycle is disturbed!  I don't sleep well, certainly not without medication.

And my adrenal function is backwards. When I wake, my adrenal output should be high, but it's low. This explains why it's so hard to get out of bed these past few months. And when my function should be tapering off to settle in for the night, mine is spiking. This explains why I have a hard time falling asleep without medication. So, Party Aimee is back in full force. That would be great if I was a bartender, but alas I am not. He puts that aside.

It seems the thyroid test and parasites/Candida tests aren't back yet. Damn.

Lyme.  Positive. WHAT?  POSITIVE!  HOLY SHIT! I don't know whether to scream, "I FUCKING KNEW IT!!!" or cry with relief.  Not relief that there is more wrong. Relief that I will now get more answers. I do neither, and just hope that Sky King is taking good notes, because my mind has just wandered down the path of glitter, rainbows and hope, and is getting ready to do some body shots with Matthew McConaughey.

We get through the rest of the visit, and reschedule for 4 weeks from now.

We leave with:

• Additional lab paperwork-I'm going to try to run it through my hospital, rather than pay out of pocket
• A movie to watch: Under Our Skin-It's streaming on Netflix
• Homework: We will research, and make decisions about my treatment
• A website to visit: ILADS.ORG  This website talks about the controversy with Lyme Disease.

Controversy? What controversy, right? You have Lyme Disease, you treat it, right? A few weeks on antibiotics, right?



In the 1970s, scientists became able to have a biological patent on a discovered organism, or something that was genetically altered. Wikipedia that shit. See where that can go-it ain't pretty.
But what that meant, and still means is this: When scientists, doctors or researchers discover and isolate an organism that causes disease, such as the spirochete that carries Lyme that was discovered in 1975, researchers can patent it. And so it went-different bits of the spirochete were patented. And with patents, you are protecting something from others making a profit while leaving you out in the cold. So different components were patented by different researchers, each one hoarding the information, no one sharing. Which makes sense if you don't want someone to steal your idea. Or if you want to be the one to create the vaccine that will spare the world of Lyme disease.

Before this gets way too politically out of hand, I'm going to simplify it for you.

When you get an illness, you go to your doctor. If your doctor is part of a network like an HMO or PPO, you have a co-pay-you don't pay the full value of the visit and the treatment, because you have some sort of insurance.  The insurance companies spend tons of money on teams of doctors that decide appropriate treatments for each ailment. This is how you don't get a free nose job when you slip in the hall and hit your face.  A hit to the face does not warrant plastic surgery to make you look like Megan Fox, minus the man thumbs.  All sounds legit, right?

For Lyme Disease, the protocol is 2-4 weeks of antibiotics. Done, cured.

What's the problem? No one knows how long I've had it. There is not a definitive test. It could have been just over 2 years ago, when I noticed the bigger symptoms.  It could have been when I was preggers with Monkey Boy, 13 years ago, and went camping a lot. (Still do.) Why then? Well, I have had sciatica since then-Lyme can cause sciatica. Especially on both sides, which I have. Debilitating, life-altering at times. Or, it could go back to when I was 13, and had Mononucleosis. Why then? Lyme mimics Mono. So we don't know how long it's been spiraling it's way into my blood, my organs, all my soft tissue. What I DO know is this: I'm sick, I've been sick for a long time, and  I want to be well. And, many doctors do not believe that Chronic Lyme Disease is real. Really.

So what now? Now, I get to do some research, and Sky King and I will look into treatments, make some decisions, and go forward.  What am I left with? A body full of:

• Lyme Disease
• Fibromyalgia
• Chronic Fatigue
• Raynaud's Phenomenon
• Serious cravings for body shots with Matthew McConaughey

Any questions?