Tuesday, January 31, 2012
Why, you are asking, have I chosen to malign the name of something so fabulous?
Mmmmmmm.....it was so, so very good. And this picture doesn't even do it justice. So why did I post it? Because I had to show how amazing it was, but I gobbled down the first serving-you can see remnants on the plate. So I had to get some more, and take a pic (the suffering I do for my art...).
But why, you ask, do I have to give up so much, just for a meal?
I'm going to tell you.
Remember when I pissed and moaned about my diminishing cognitive function here and here and...wait a minute. I've sung this song before.....
Oh well, you get to hear it again.
It's gotten worse.
As in, "I couldn't follow the steps of a recipe" worse. Cue Sky King's Master Chef-ing duties, and the most amazing risotto ensued. During the process, he said, "Why aren't you just dumping in all the liquid?" to which I replied, "because it says not to..." and I must say, we both agreed it was worth it.
Here is the recipe, in case you want to copy me:
Butternut Squash Risotto with Crispy Pancetta
Just know that "Pancetta" means "bacon", and "Butter" means "Dairy-free alternative" and "White Wine" means "drinking the rest of the bottle won't help your cooking skills".
So, I couldn't follow the recipe. I attributed it to the extra wine that would just go bad, which is wasteful. I may be a horrible swearer, but I am NOT a wine waster.
Then, I noticed a few times in the past couple days where I have tripped over my tongue. Not because I was attempting to lick Mark McGrath on a Southwest Flight to Vegas (Damn you, Sky King, from stopping me-I totally could have taken that bodyguard). Tripping as in, you know when you have had just a little too much to drink, but you don't know it until you try to speak and come out sounding like a drunk idiot? Well, imagine that, but you're sober. Scared the shit out of me. Well, it would have, except that the Antibiotics are doing a fine job of that already.
Anyways, I have been fumbling over words.
Then, I went to do a craft that required a new product that had directions. I could not, for the life of me, comprehend exactly what they were trying to get across. So I winged it, screwed it up, and re-did it with stuff I know how to use.
The words, thoughts, and images aren't coming as easily. And I hear this is only the beginning. So, before I get too bleary-mouthed, I will leave you with one last (hopefully not, but I'm being prepared) cohesive spew from my brain:
There once was a bodacious chick,
With skills that were always quite slick.
She would write and would curse,
All while forgetting her purse,
Just because she got bit by a tick.
See? My brain is falling apart already.....sorry "bout that.
Monday, January 30, 2012
I posted about feeling hopeful the other day. I am hopeful. But I am also realistic, and everything I hear about Lyme treatment, every first-hand account? It gets ugly. Ugly ugly. It drove me to do something I was hoping to avoid. But then i could no longer put it off. I had "the talk" with both kids, separately. And not the "stop playing with yourself in the shower, Mother Nature is crying" talk.
It was the dreaded, "Mommy is sick, and going to take lots of medicine, and sometimes that medicine is going to make Mommy look like she is getting worse, not better. But this means the germs are fighting back, but it also means those germs are losing" talk. I did surprisingly fine during the talk. Princess said, "Okay. Can we have McDonald's?" Which means, we will be revisiting this at length, many many times in the coming years.
Stoic Monkey Boy stared at the wall 3 feet from my face, didn't ask any questions, and nodded. To be honest, I think he's scared. He's the one I worry about the most, because he's so in tune, empathetic with me.
About 6 months ago as I was gobbling large quantities of pills while chugging water, he said, "Mom, do those pills keep you alive?". My heart broke just a tiny bit that day. But I said, "No, they make me not want to kill you or your sister, when I don't feel well." I did, however, explain to him that I was kidding and that they just make my symptoms better, and that I would grow old and torture him for many more years to come.
But this means there's a lot going on in his head that he doesn't say. If you know Monkey Boy, he's not too chatty. With his close friends, yes. When he's surrounded by his peers that he's been in school with since 1st Grade, yes. But on average? Stoic. Quiet. Introspective. There's just so much going on is that head, there's no room for the words to escape.
I'm being strong for me, strong for my family. Being positive. Because if being a positive, stubborn obstinate bitch is going to kill this shit, I'm as good as healed.
Still I worry, and days like today, I get all think-y. Which ain't a pretty sight. I was doing so good, now the tears are barely staying away. So, I'm going to wrap this shit up. But not without leaving a little something for those of you fighting your own battle.
While perusing the internets, I came across a new (to me) blog.
I had Googled "Lemon water for Lyme Disease" and one of the first entries was this:
And I must say, I have a new blog to add to my roll. Good lord, I hope she swears. Diseases are no fucking fun without a whole lot of motherfucking swearing.
Sunday, January 29, 2012
On Tuesday, I began my very first full-scale assault on the nasty little germies that inhabit my body. I began, with no trepidation at all, a twice-daily dose of 100 mg of Doxycycline. I want this crap out of me, the sooner the better.
Maybe some background, for those of you that continually fail to pay full attention:
I have been in constant pain for over two years. Before that, I had Sciatica for 12 years chronically, intermittent before then. And I spent many of my teen and early college years battling numerous infections: Tonsilitis, Strep, Bronchitis. Practically the only things I haven't had are STDs. Really! Never!! Fine, don't believe me.
When I found out I had Fibromyalgia (and all the other things) I was sad. I was angry. I was despondent. I didn't want something that had no known cause, very few treatments, and certainly no cure. To find out that I have something else, something verifiable by bloodwork, something that has a clear-although controversial-treatment, that sometimes results in a complete remission? Something that mimics Fibromyalgia and Chronic Fatigue, and causes Raynaud's? Sign me up! I can't begin to tell you the elation I felt, knowing that I now have a diagnosis of something that people are recovering from. I know it's going to be a battle, a rough ride at times. I know we have to prepare the kids for me looking pretty bad, seeming pretty weak. But I also know there is a new light at the end of my tunnel, a light that really wasn't there before.
So, I jumped at the chance to get diarrhea. I ran down to Costco to fill those scrips, and I gladly forked over my Costco card (complete with hilarious picture)...
...for the rare but distinct opportunity to subject myself to chronically loose stools (who has loose stools? Either they come out in the own sweet-ass time, or they fly out of you with the force of a cat from a fluff cycle in a dryer. There's no middle ground. Or very little.).
By the way, "loose stools" sounds like some sort of bar hazard. Which is perilous enough. Then add in painful bowel pressure, and you've got yourself a party. If the kind of party you enjoy involves a lot of "alone" time in the potty. Remind me to never party with you.
Fortunately, I take plenty of anti-depressants, which are constipating. Add in some pain pills, and I could be carrying an extra 15 pounds at any given time. I used to have to balance my magnesium (in the very expensive malate form) with the other pills. Now, I can dump most of the magnesium, because the antibiotics are doing their job. Doing is quite well, too. I lost 7 pounds the first 3 days. By May, I'm going to be small enough to become a supermodel. But for Little People, because I'm 5'3". All while eating my favorite whole foods, amazing homemade fruit and vegetable juices, and lean organic meats. No sarcasm here, nope. Food issues? No thank you, I brought my own.
You know when you're home sick, and you feel like the whole world owes you yummy goodness, because at least then your mouth would be happy? I don't even get that, because I have to make sure I put healthy things in. Less wine and cookies, more kale and beets. Not that I mind my veggies, but I have a particular affinity for yummy goodness. And I like my yummy goodness to be easily accessible. And sometimes I am at the mercy of the people I live with to get food for me, and they don't like directions that start with, "soak the raw almonds for 4 hours...". Neither do I, truth be told.
So my comfort foods have to be things like Indian rice pudding (which is quite good), and gluten-free pancakes made with coconut milk, filled with real blueberries, and just a little real maple syrup. These things have become my comfort foods. No mashed potatoes, no cheesy rice, no peanut butter toast. No grilled cheese sammies, either.
But I'm making due, and settling in for the long haul. In a couple days, I will add to my regimen twice daily Azithromyacin, 250 mg a pill. I've had Azith before, and it upset my stomach, so it's in my records that I do not tolerate it. I have just become Newt Gingrich at a Gay Marriage Rally-in order to survive, my definition of tolerance needs to change. I'm a wee bit more nervous about this week. But if all goes well, I will be moving right along towards the promised land of remission.
In about a month, Dr. M is going to check in, see how I'm tolerating things. If things are good, I'm getting the meds upped. (Hating that habit of doctors-"Well, you're doing so well, let's see just how much you can handle!") Then, there will be a change off of Doxy, because I can't be in the sun. He has had patients get blistering sunburns on their knuckles from driving on a sunny day in the winter.
So I'm in the market for some big-brimmed hats. And large Jackie O shades. Between those and the long skirts and long-sleeved shirts, you'll hardly recognize me.
I'll make it easy for you-I'll be the one squeezing her ass-cheeks together, running towards the ladies' room. Bring a match.
One of the things those San Francisco wonder Doctors both mentioned (as did my new Rheumy, and my acupuncturist) was that people with Lyme Disease cannot be around mold-I can't remember why-hell, I'm lucky I remembered this much. Oh, and the two docs I work with regularly told me I have a severe mold allergy, on top of it all.
What does this mean? It means we have to move. YAY! Everyone loves to move, right?
Luckily, (in more ways than one) we rent. We sold our home at the peak in California (2004ish) and joined the renting ranks just in time. We have been renting ever since. We began in my parents' home. They generously shared their home with me, my husband and 2 kids, and a cat. Right before we all killed each other over proper toilet paper roll etiquette, we moved into the ghetto.
It was a fun bunch of duplexes, near our local
Then, things turned around for us a bit, and we moved to the party house. It's a beautiful A-frame with large open rooms that look out onto a sparkling pool. The neighborhood was decent (if a bit busy at commute time when people use our street to cut through on their way home) and we weren't concerned about the schools, as our kids go to a charter.
One of the flaws in this beautiful home is a sincere lack of insulation. And when I say "lack", I mean, when you install another electrical outlet outside to accommodate the Christmas lights, it is highly likely that someone inside will see your fingers working outside, though an interior outlet. And, because of the beautiful exposed-wooden-beams-peaked-roof, there is no insulation on the ceiling either. Which also means no room for heating and A/C ducts. So, the obvious choice was to run those ducts through the cement slab. Duh!
When you run duct work through concrete slabs, might I suggest you check the water tables first? Because if the area has a high water table, and the ground gets saturated easily, that porous cement will fill with water. And so will the duct work. One clue that the water table is high? If you have to turn off the sprinklers in 100 degree heat, because the lawn won't dry out, you *might* have a water table issue. Another clue? Rusty sidewalks. From all the minerals in the water that doesn't evaporate, no matter how hot it gets.
Now, we reported the "sloshing" sound coming from the heating vents. Seriously, it sounds like the drum beat from "Jumanji". Any moment, I expect to see a half-naked Robin Williams being chased by a Rhino through the living room. And not in a good way. (Is there a good way?) Someone came out, and said he'd report it back to the owners. That was two years ago, so I am starting to lose faith. And instead of paying $300 to find out we definitely DO have mold, we are just going to go with the concept that yes, we have mold. Now we have to find a place to move.
This is no small task. There are some seriously demanding people in our lives, and it has always been the understanding that we have the Party House. (Kind of like college, but it costs more now-same amount of peeing against fences, though). And in order to convince the kids, the house has to be pretty much better than the one we are in.
We began a few months ago, looking to see what was out there. We had a few requirements: Pool, boundaries for the right High School for Monkey Boy, hopefully a quieter road so Princess could ride her bike around. Bonuses would be: a spare bedroom, a hot tub or master whirlpool tub (hot water therapy for me), and interesting architecture-we didn't want one of the many modern McMansions that have popped up in the last decade.
Finally, we found it. :::cue angelic music:::
It's a ranch-style 2 story. 4 bedrooms, 3 bathrooms. Large deck for entertaining, huge lawn, quiet street with a few families with kids. (My kids might actually get to play hide and seek 'til the street lights come on!) A vast lawn, a beautiful pool, and a sauna room complete with 8-person hot tub. There are a couple compromises: the master bath is teensy, the master closet is a total joke. It's an acre, that someone will have to mow. But the kids are excited, Sky King is, too. And the troops have rallied to get us in there.
I gotta say. I always knew we were loved, you know? But since this thing, this Lyme, people have come out of the woodwork to show their support. I had two different groups hand-delivering boxes yesterday. Two! And, one of the groups showed up carrying breakfast, all ready to help pack and clean, too! I have more people out there with boxes (we will see you all today, I'm sure, once Sky King is properly caffeinated
I have been moved to tears a few times in the past couple days. And that's not just because I'm PMSing. Seriously, people. If you are in my real life, you have set the bar mighty high lately.
Now, more than ever, I'm having to rely on others. And for me, that has been one of the hardest parts of this illness. I was never good at saying "No" or asking for help. And now, (especially today, after overdoing it yesterday) I need my friends and family more than ever. And I know you will all be there. You've proven it already.
Keep an eye out for the invitation to the house-warming! Oh, and bring a swimsuit. We are all too old for some sort of "suits optional" debacle.
Thursday, January 26, 2012
It has been a busy coupla days.
After we went to the actually-fairly-interesting-but-super-technical talk about Lyme Disease and treatments, Sky King and I came home and decompressed.
Then, it was off to Dr. M bright and early to get my final FINAL FINAL results from all the poo, urine, spit and blood I've been handing out lately. Good thing I'm not a dude, or I might have been asked to step into a room with some dirty mags, and fill a cup. Unless that's a fun thing to do when a nurse is waiting right outside for the specimen. The pressure must be intense.
So there we are, sitting in our little doctor office, and Dr. M shuffles in (he wears Birkenstocks, and the only way to walk in them is to shuffle). I had already decided that I had multiple co-infections. That way, if I only had one or two, I would be all, "Awesome! I only have two other diseases to combat! Fuck YESSSSS!" (which might be why they always close the door extra tight when I'm there-all the emphatic cussing.)
I DON'T have parasites. Yay!
I DON'T need a major overhaul OR a rebuild on my thyroid. Awesome!
I'm NOT completely overrun by a massive yeast infection called Candida. Can I get a Booyah!
One of the nastier co-infections is Babesiosis-NEGATIVE, bitches!!!!!
The ONE I tested positive for is Bartonella. It is known in the disease world as an opportunistic pathogen. So, you know when there's a hot guy at the club, and all the bitches are strutting their stuff all in front of him in order to get his attention? Bartonella is his mildly not-repulsive friend that's going to hang around and try to get the hottest chick talked into a threesome.
And the talk on Sunday gave us a little bit of info on how this bastard gets ahold of you. Remember when I talked about the little critter that bores into your red blood cells, splits into eight, then waits for the cell to die off to find eight more red blood cells to penetrate? That's my little bugger.
So the way Lyme treatment works is like this:
First, once you figure out the co-infections, and usually go after those first. This is the part where I try to explain the space-time continuum--oh wait, no. This is the part where I explain why I have to be in treatment for this disease, and the treatment is talked about in terms of years. YEARS, people. Like, batten down the hatches, it's going to be a bumpy ride. By the time I'm rid of this shit, we could be able to teleport. Cancer might have a cure. Our nation could be debt-free. THAT long.
When Dr. M talked to us, he basically gave us some choices. He only works with oral antibiotics (that means "in pill form", you pervs). Which means, if I want IV meds, or I get to a point when I stop responding, I need to go to Palo Alto to the Dr. that does that. I would have to travel, and have a PICC line, and self-administer.
I decided that, while I've always been intrigued by IV drug use, I would save that little treat for a special occasion. So, we left with our lists of stuff to do, and stuff to not do, and off to the pharmacy we went.
Here's where I tell you the importance of shopping around, especially for drugs. Wal-mart wanted $160 for a month's worth of Doxycycline, and $289 for a month of Azithromyacin. Ouch. Costco, on the other hand, was looking more like $70 per month, for BOTH. Even I can see the value in that math. Off to Costco went me and my Princess.
At Costco, they got me all hooked up with their super-drug-user-saver card. This brought it down to $46 per month, once I explained that it really did say 60, and not 6. The pharmacist was perplexed, and expressed concerns about my impeding gastrointestinal situation. I can only imagine what he's going to say when he sees me next month...with scrips for the same pile o' pills.
The only downfall was the wait-35 minutes inside Costco. In actuality, the cost of the pills will need to be figured out with the addition of the crap I bought waiting for the pills. This is how that might look:
Cost of meds-$459 Cost of meds-$46
cost to my psyche-immeasurable Cases of trail mix, chips, granola bars, jerky, cereal bars,
shampoo, Ibuprofen, a 2-pack of wool socks, a 2-pack of capri leggings for Princess,and a 25 pound bag of
Total cost-Infinity Total cost-$174
Costco is the clear choice. Next month-just for shits and giggles-I might try to run it through my HMO.
Fortunately, I will be moving to a PPO in a couple months-April at the latest. One of the many good things about owning your own business is the ability to make my own insurance decisions. And in this case, my decision won't affect my employees either, so all's good.
Once I got home, it was time to sort. What I had to do was take my list of current medsHarumph. And to think I was overwhelmed when I had to start using a pill sorter in the first place...
Picture some hot chick dressed in the latest style leaning up against the wall smoking, saying, "You've come a long way, baby".
And just like all those ads that were devised to encourage women to be independent through the constant inhalation of carcinogens, I have graduated to a bigger brighter larger pill storage system. Let's call it the BBBPPS for short. Or shitballs. One of those.
Now I have 3 things along with a glass of water on my nightstand. Then in my lunchbox (foodbox?) I have breakfast and lunch and snacks for the day, along with that day's breakfast and lunch pills. All because I brought these cool pill sorters that pop individual days out for taking along. I bought two: one green and one orange. Green for breakfast, orange for lunch. I didn't want to have to write on each little pod, so I figured I would use them alphabetically. That way when my brain fails me, I can at least ask people what colors they are, and which one comes first alphabetically. Almost Aimee-proof, I tell ya. I then converted the AM/PM one to Dinner/Bedtime with my handy dandy Sharpie, and voila!
To quote Huey Lewis (I have been wanting to say that for like, forever!) I gotta new drug. Or two. A new diagnosis (dx, for you medically literate geeks). All I need is .....a new attitude? No, that was Patti LaBelle. I know...I was told I need a new name, that Fearless Fibro Warrior doesn't exactly cover my situation.
I guess I was a little short-sighted when I named my blog. I posed the question to the ever-helpful world of Facebook, and it seems as though I need to use Luscious. Lyme, of course, which one pal pointed out could also be indicative of a love of margaritas. And Goddess, rather than Warrior, to be powerful, yet uniquely feminine. (Man, should I write ad copy, or what?) I heard some serious shout-outs for Lymbrolicious as well. I dunno. Maybe I should stick with my old name. I mean, just because a little baby girl is named Candi or Bambi, doesn't mean she has to change it to something else when she does not grow up to be a stripper, right?
Stay tuned for the dramatic conclusion, "What will those antibiotics do to Aimee's bowels?" on the next episode of FFW...
Sunday, January 22, 2012
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
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.
Saturday, January 21, 2012
But, I am truly exhausted and the taxation of a week of traveling, shmoozing, canoodling and networking has left me a wreck. I can be such a puss sometimes. So, I will give you another teaser of my wit and charm, all the while possibly alienating my new bestest friend in the whole wide world. (Not to replace ANY of my current bestest friends in the whole wide world-because, like in college when I needed multiple drinking buddies to keep up with me, I now need multiple bestest friends, because I am so adorably needy.)
I get to my training. I, being a high-maintenance Diva, have special food needs. The ever-lovely Kay, purveyor of all that is edible, wants to touch base with me regarding MY special needs (irony NOT lost-turns out, this is the first of many lessons of the week about how
Kay comes up to me, as I am adjusting my name tag. This name tag is my key to the week: it hangs around my neck, complete with elastic cord. My name is on it, with my first name large so that it is as easy as staring at my tits to figure out who I am. Which is awkward enough in a field dominated by large older women, but that's another post for another, drunker, time. There it is:
Also on my name tag is my city of origin. On the back, I can slip in my room key. Also, there is a slot to insert my special food needs, complete with color-coding-orange for NO DAIRY-NO GLUTEN. It's all very pre-school, which I appreciate. It would be even cooler if we could add scratch 'n sniff stickers. I would choose skunk. And vanilla. Damn, I already turned in my evaluation. Maybe I should email that.
Where was I? Oh yes. So Kay comes up and says, "Amy! Amy Webber!" I say, "YES!". "Wait, no. Aimee WALKER. Not Webber." I should have noticed she spelled it wrong when she said it the first time.
We had our conversation about my neediness, and for a fleeting moment, I wondered who this "Amy Webber" was. Do you do that? Concern yourself with other people with your name, wondering if they give you a bad rap? Me too.
There is one other Aimee Walker. She is a gymnast that is deaf. She has also been on TV shows. Then there is Amy Smart, Aimee Mann, Amy Adams (LOVE her!), Amy Grant. All upstanding Amy's. Amy Winehouse? Well, while drug-addled, she was amazingly talented, so she gets a "pass". So, all in all, pretty good.
I was super-bummed with the whole "Joey Buttefucco-Amy Fisher" mess, ESPECIALLY when she had her car custom-painted with MY spelling-AIMEE. Don't think I didn't notice. I was pissed-I took it personally.
So when I got to the conference and saw there was another Amy, I was intrigued. I was thrilled she was in Child Development, which meant she was borderline-awesome already. But. But what if she loved Circletime, the bane of all true child-developmentalists? What if she liked worksheets? Or, :::gasp::: desks lined in a row in order to encourage quiet acquiescence in young children because, well, they had to learn it someday. :::shudder:::
I forgot about these thoughts as the day went by. Why? Because I have problems with memory, don't you people pay attention!?!?!?
Day 2 was unremarkable, as it only contains stories about one Amy-me. I will bother you with those stories later.
As is customary at these trainings, we had been shuffled into smaller groups. I schlepped my amazing, but VERY heavy, materials to the next room. I wandered up to the front. I plopped down, and proceeded to unpack. Pen, highlighter, mints, glasses, paper for notes. The chick to my left had removed her rings, and was putting lotion on her hands. This reminded me that MY hands were also parched, and remarked, "Oh, that's right! Lotion!" She offered me some of hers, and I said no thank you, whipping out a plastic to-go container of white goo, saying, "I have mayo. Much better for my hands". She said, "Awesome!" or something else equally *understanding. This was my first hint that she was cool.
*Sometimes, I say things that are slightly off, like putting mayo on my hands as a moisturizer, just to test the waters. If they do the eye brow raise with the eye roll and avoid contact the rest of the time, they are NOT my people.
Then, I see that she is left-handed. I am left-handed. Hmmmm. This means she's cool, just like me. Then, I see her name tag:
I found her! I sneak peeks out of the corner of my eye, trying to judge how really cool she is.
Then, the most amazing thing happened:
We were chatting in small groups and we all had to share something personal, and something having to do with diagnoses came up for me. We got brought back to the larger group and Amy leans over, "What do YOU got?"
I proceed to write down my diagnoses, she looks at the list, points to herself, and whispers, "MS".
Anyways, we got together on the break, and at lunch. All of a sudden, I was a part of a two-person secret club. These are the kinds of convos we had:
New BFF:And don't you hate it when you are picking something up, like, hot coffee, and all of a sudden, your hand stops working, and you drop the whole thing, breaking your favorite mug?
Me:Yes! Or, you are filling your weekly pill dispenser, and your fine motor skills fail, and the pills fly everywhere!
NBFF: Yes, and then you realize you...
Me, and NBFF, in unison: NEED A BIGGER WEEKLY PILL DISPENSER!!!!
We laughed like old friends. We found many more similarities, including our love of twisted humor. This got us on the subject of blogging, and we swapped our faves. At this point, I tell her about my almost-inappropriate girl crush on Jenny Lawson, from The Bloggess. Amy has not heard of her. I say, You mean you have never heard of The Bloggess, and the 6 foot metal chicken, Beyonce'???
Amy's response? She texts me this:
This is her (obviously patient and loving) husband, with a 12 foot metal cock.
The obvious fate of the universe cannot be ignored any longer.
We then pledge our undying desire to keep connected through Facebook, and proceed to bond further over large amounts of pills chugged with cantaloupe martinis. Okay, she only had water with lemon, so I drank the martinis in her honor.
Best friends are awesome like that.
Oh, and we established a great new coalition to put an end to useless Circletimes, once and for all:
Women Invested in Non-Traditional Education, W.I.N.E. for short.
I can't wait until our first meeting.
Thursday, January 19, 2012
I am so sorry. So very very sorry.
I planned to go out of town for the entire week, and didn't even stop to tell you.
Fear not, though. I have been mingling in the public, and now have LOTS of material. Shit tons.
Just a teaser: The showers in the hotel are remeniscient of getting spit on by a hobo. And, I may have found my new BFF. More soon...
Oh, and my attention span? Akin to a pubescent squirrel's.
Sunday, January 15, 2012
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%
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.
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
- Chronic Fatigue
- Raynaud's Phenomenon
- Serious cravings for body shots with Matthew McConaughey
Lately, I have felt totally, completely out of control.
Yes, I am aware that I have never been in control, and all those years I spent trying to control things were years I could have been learning something useful, like knitting. Or arc welding.
And for someone with the list of physical problems that I have, being in control in any way, shape or form is more of a joke, like prepping for a triathlon, or ignoring a sale on boots at Nordstrom: Not gonna happen.
But I have really, really REALLY felt extra, super-duper out of control.
Why? you ask. Well, in addition to my usual complaints, you may remember that I fired my Rheumy, found a new doc that I totally love, and took a bunch of tests.
I went back, helpful supportive husband in tow. We got the test results: Lyme Disease. Blech. I freaked out for a week, cried my eyes out, ate a bunch of bad foods to soothe my achy soul-you know, the usual.
Now, we are not-so-patiently waiting for the test results of the additional blood work for co-infections. Instead of consulting with Dr. Google about whether I have Babesiosis, Bartonella, Ehrlichiosis, or one of the many other co-infections, I have instead moved to obsessing about things I CAN control. (For the record, it's totally Babesiosis. I know this because I Googled it, and those symptoms fit the best. Except the weight loss one. Why is it that I NEVER get THAT symptom?)
What can I control? Well, the list of things I can't control is growing exponentially, including whether my son runs me completely ragged by looking like he's doing his assigned reading but doing anything BUT reading, making dozens of trips to the kitchen for food he will painstakingly prepare, claiming absolute starvation. But one thing I CAN control? Salt.
Huh? A Little-known fact about FFW, or Aimee, or that crazy-ass sick chick (or whatever else you call me in your mind) is that I love little tiny packets of stuff. Maybe it's the inner granny with a Sweet 'n Low obsession, but I really REALLY love little packets of things.
Here are some of my faves:
- Taco Bell sauces, especially when they began putting cute phrases on them, like "Where are you taking me?" and "Ahhhh. We meet again."
OK, where was I?
Oh yes. Favorite little packets of stuff.
- Taco Bell sauce packets
- The jellies where you have to break the end corner, fold it this way and that, and use the corner to peel back all the wonderful jelly-ness (Side note: the jellies make wonderful blocks for Princess when we are waiting for a meal at a restaurant-she's adverse to playing games on our phones)
- Any packets that squooze out in a thick glop if you manage to rip the perfect 1/4 inch hole in the end, i.e. peanut butter, butter, and mayo
- Salt. I LOVE the little packets of salt.
(Holy shit, you guys. He just made a batch of lemonade. Then, he stirred and stirred and stirred. With a skinny spatula, one of the most inefficient stirring devices ever. All the while, singing, "stir it up, stir it up, la la la". Then, he spilled a bit on the counter, and the floor. Which is normal. But then he cleaned it up. Diligently. Arrrgggghhhh!!!!!!!!!!)
(OK. I just totally lost my shit. I turned toward him, as he had put some lemonade in a water bottle, had super-painstakingly fastened the lid three times just to be sure, and I yelled, through clenched teeth, "GETTHEFUCKOUTOFTHEKITCHENRIGHTNOW". He moved quicker than I think he ever has. He just might not die today. Maybe.)
Ziptop bags seem equally wasteful. So instead, I spend my free time stealing individual packets of salt. And there are two different kinds. There's the kind
(Great. Now everyone is mad, both Sky King and I have tag-team yelled at him. Now he's pissy, and I have confiscated all sustenance. The only thing he has left is to say he has to go to the bathroom, then shit will be getting REAL.)
There's the kind that rips on the corner, and pours out. Think, movie theatres, KFCs.
This is crappy, sucky, shitty salt. (Yes, I'm taking Monkey Boy frustration out on a salt packet.)
What is the best kind of salt packet? The kind where it has two lovely salt-filled tubes. You snap the packet in half, which completes the perforation. Both sides then pour out two salty rivets of iodized heaven onto your hard-boiled egg, or your greasy popcorn, or your drive-thru fries.
I recently found these packets at a theme park. They were living at a condiments station, completely out-of-view of people that would judge me by my salt-hoarding. So I stocked up. And every time Sky King would access my backpack to retrieve something, he would come across them, and shake his head in disgust.
Later, I had to move the packets to an area in out luggage he wouldn't mess with. I got a small souvenir bag, and filled it with the packets, and added in some salsa packets. Real, chunky salsa, in packets! I was in individual-packet heaven! Then, I put the smaller bag into a bigger souvenir bag, and set a reminder on my phone to move them when we got home. They are now carefully ensconced in our napkin drawer, which is "base" for some of my crazy food stashes-Sky King won't disturb them, that is their home.
I LOVE these packets. And I HATE the other ones. I give the crappy ones to the kids-I tape one to the shell of the hard-boiled eggs I put in their lunches. The lunch-room staff either thinks I'm batshit crazy, or they're jealous. I prefer to think they are jealous.
(Oh, and in the past two and a half days? Monkey Boy has read exactly two and a half chapters, and taken three naps. Lord, help him.)
Friday, January 13, 2012
Why is this an issue?
Well, in the blogging world (or quite possibly in my own head), followers on one's blog equate glittery rainbows filled with chocolate on a bed on hundred dollar bills. Or as Martha would say, it's a good thing.
Followers are people that love you and what you have to say so much, that they have committed a little bit of their soul to you. They are willing to be bombarded with your blather through email or on your homepage, or whatever. They eagerly anticipate your every word. Which is important because most of my words are funny. And some of them are highly inappropriate, which is also funny.
Followers on Pinterest automatically get your pins when they open their account. There are all your fabulous ideas, in a sea of other fabulous ideas. Yes, it's cool, but really? It's Pinterest. It's like the fruity candies of the Halloween loot-yum and all, but still, not chocolate. not quite as bad as a bunch of part-chewy, part hard butterscotch discs, but not quite a Snickers.
Followers on twitter are people that: Follow you because you follow them, and want to return the favor, or follow you, I dunno why. Some seem to be peddling porn, which I'm not buying, and follow me, thinking I will follow them-but I'm on to their tricks. My blog links in to Twitter, so followers get advance warning of my mouth. Which maybe twitter followers think is the same.
I gotta say: It's not. There is something incredibly satisfying to log in, and see that I have new followers, complete with a profile and a cute picture. The other day, I got 2 more. TWO! That's like, the equivalent of a full size bar!! (I must be PMS-ing, sorry for all the candy references)
Maybe I am crazy-hell, I AM crazy, I got a diagnosis to prove it. But to me, new followers really make me happy. Like pulling a big bath sheet out of the dryer, and wrapping yourself in it, absorbing all it's clean warmth. Or, going out to run an errand like picking up more stamps, or grabbing some toilet paper on sale. Totally unremarkable. Then on the way back to the car, you spy a piece of paper on the ground. You pick it up, and it's an unscratched Lottery ticket. So, then you get the whole OMG-my-entire-financial-life-hangs-in-the-balance butterflies in the tummy, while you scratch it. And, you win, like $20.
What my over-medicated brain is trying to say is that having regular followers who commit to being bombarded with my blather on a regular basis totally makes me happy. Like, I-don't-have-a-bunch-of-crappy-medical-conditions happy.
So, do a sick girl a favor: click somewhere on my blog, and follow me. Publicly. Shout it from the rooftops that, even though I am slightly crazy, incredibly profane and amazingly troubled, you accept me for who I am, and are not afraid who knows it. If I can live with the shitstorm of crap I live with, and still see the brighter side of things, still amaze you all with my hilarious antics, I deserve a prize-and my prize can be you! But not in the meet-me-at-the-door-wearing-nothing-but-a-bow way. I think my husband might find that *a bit* creepy.
And if you already follow me? Link me on your Facebook page. Be me "friend" (Aimee Napierski Walker). Share me with your friends-but in a totally nice, sunshine and daisies way, not in the ugly gang-rape way.
Okay. I think that is it for the night. But you never know-I might get inspired to bother you some more. My husband is home from a looooooooooong week away, and I'm all giddy. Which makes me chatty. He might have other ideas, though...
Thursday, January 12, 2012
Princess was reading "The Night Before St. Patrick's Day" aloud for homework. She has a whopping 15 or so minutes of homework (thank you, Montessori charter school). Still, it's amazingly difficult to get the homework done. I dunno, maybe she is channeling Monkey Boy, who manages to drag 1 hour of homework (No, thank you, Montessori charter school) into 5 hours of nagging, which results in half the homework being completed, and of that, half of which will never see a teacher's desk. SMH.
Anywho, Princess was reading. And after, she remarked that we better not set any traps for the leprechauns, because they will totally trash our house-the statement was said with the brevity of a believer. She was quite serious when she was explaining the havoc we will encounter if we should attempt to trap one. She also believes in the tooth fairy, Santa, ghosts, guardian angels, Mother Nature (as a being), the Easter Bunny, and any other mythical thing you can think of. And her belief is fierce. I figure we have a good 5 years left-I'm hoping she doesn't end up completely psychotic when she finds out-truly, it could completely upend her world. Because her world is made up of rainbows, glitter and unicorns, and smells like cotton candy.
On the other hand, we have Monkey Boy making inappropriate remarks about rimjobs and using the term appropriately (No, thank you, Urban Dictionary) and then we have Princess. She is young: a couple months shy of 8. But I know 8 year olds that talk worse than me, and have a world view that would knock your socks off.
Not Princess. I used to say she was a "young 6" but then she turned 7, and saying she's a young 6 sounds like I'm trying to say she is dumb as a post, which is not the case. So, I have decided that she has the soul of a rainbow. She has such a carefree spirit-I have never met a child like that before.
Princess: Why did the clipboard leave the cubby? Because it had to go to a BOARD meeting!
Princess: What do you call a triceratops that puts bad guys in jail? A triceraCOP
Princess: What did the teddy bear say after dinner? I'm stuffed.
Truly, she does this all the time. Even when she's in her room, alone, and I can hear her cracking herself up.
Another thing she does is create crafts from garbage. She will create an amazing structure out of a sock, a toilet paper tube, the fluff off the end of 75 cotton swabs, and some ribbon. Then she will name it, give it a personality, and cart it around for a week, until we throw it away when she sleeps, because we are sick of her dragging it around, making us refer to it as Aunt Martha.
She spends tons of time doing funny things-I have even caught her practicing funny faces in the mirror.