My Friends Are Better Than Yours

I really have the most amazing friends.  And if you're friends with me in REALITY, so do you, because we probably share the same friends.  If you only stalk me from your computer, you must now also deal with the realization that ours friends are sub-par.  Sorry.

Do you remember The Spoon Theory, by Christine Miserandino?  The one that describes how people with invisible illnesses (fibromyalgia, chronic fatigue, PTSD, Chronic Lyme, lupus, etc.) have a limited number of "stores of energy" with which to live life?  If not, go check it out.  I'll wait.

Took you long enough.

Anyways---something about that story really resonated with me, when I was struggling with my diagnoses and had a hard time describing it to people.  I was ahead of the game, by knowing that many people could not relate.  All they knew was that a person with superhuman energy was all of a sudden a couch lump.  I couldn't even describe it myself. But Christine helped me, and I shared it with others. I'd like to think that I helped "The Spoon Theory" go viral.  I don't know if it has, and it certainly would not have been my influence, but like I said, I'd like to think so. In the same way I'd like to have a pet monkey--super awesome, but more of a fantastical fantasy rather than something seated in some semblance of reality.

Where was I?

Oh, spoons.  I like spoons.  And not just because of their obvious connection to ice cream, although that helps.

Spoons to me represent the ever-changing reality of my health-spoons are a tangible reminder that my life has flip turned upside down (thank you, Fresh Prince) and that each day brings a new set of challenges.  I can say, "damn, spoons all gone.  What's on Lifetime?" or "look!  I found an extra spoon! Let's hit the buffet!" or even, "I better save some spoons for the her wedding this weekend, so I can stay up later than the ring bearer".

Because I am so creative and funny, I have inside jokes.  Even some inside jokes with myself-I'm that awesome. For instance, some mornings I wake up and I'm all, "shit.  Out of spoons already? How can that be?  I better put my superhero spoon ring on..." and then I smile at me.  And all day long when I feel like I'm about to drop, I look down at my spoon ring and I smile.  I still drop, but I and me share a moment.

Many friends have begun to understand my "thing" with spoons--they have seen my Pinterest Board, "Spoons that are Bad-Ass", and they "get" my obsession with all things spoon.

So when some friends came by for Princess' party and brought a gift, I was dumbfounded-they had helped me move, offered to take Princess off my hands during parts of the move, put together horrifically strange IKEA contraptions for my children to sleep on, AND had left before the requisite pizza-and-beer payday. Truly amazing friends.

Then they go and bring this:

They made it.  They didn't find it at some strange spoon crafts expo.  They made it.  For me.  :::tear, sniffle:::


Here is the detail of the top, which they inscribed with a quote:

"May you be blessed today with all you need! May there always be extra! May you never run out!"

I hung it had Sky King hang it immediately, and it makes the most beautiful sounds.



I can send you their info if you need better friends. PM me.

Ask, and You Shall Receive

Okay, I thought just for fun I would post something a little bit serious.  Gots ta keep y'all on your toes, right?

You may remember that we are moving, to get into a house that has zero mold problems.  Which resulted in this amazing search-the kind of house we wanted, in the area we wanted it, seems to be in limited supply in our area, so when a good one came up, we had to jump on it.  Jump, we did, and after some finagling and negotiating, we found an amazing place, that has all the things we want, including a hot tub that will become my second home.

We had priced boxes at the local shipping store.  Holy shit!  Have you ever done that?  $6 on up PER BOX.  No joke.  So, we decided dumpster diving was truly not beneath us (hell, who am I kidding?  We decided Monkey Boy wasn't beneath dumpster diving.) We only netted maybe a dozen.  And Sky King's dream is to have a house completely ensconced inside cardboard when people arrive to help.  He did NOT want to be those people that are still pulling shit out of cabinets when you arrive to help out.

So I put a shout-out onto Facebook, to see if anyone had any boxes they would like to part with.  Right away, I had plenty of offers-and most of the people even went out of their way to deliver them to us.  I was overwhelmed with support, and the boxes, tape, and offers of help kept coming.

Pretty soon, we had a house full of boxes, and Sky King had packed everything he could get his hands on.

I continued to be overwhelmed by the amount of support we have been offered. We have people offering to drive an hour to help us move.  Unreal.  It made me think, "It's a good thing I let everyone know about my health issues. Otherwise, we would be doing this with just my husband at the helm, and a random family member to help."

Then I realized, it's NOT because I'm sick, that all these people want to help.  These people are some of the nicest, truest people you could ever hope to meet.  They love me, they love my family. The reason they have helped is not because I am sick, though.

They help, because I have learned to ask for help.

I realized this just a moment ago.  Yes, I'm fortunate-I have awesome family and friends.  My immediate family is nearly as crazy as me (especially that little girl).  We have a place to live, we have income coming in.  Many people are not that lucky.  But I think one of the biggest successes, one of my biggest accomplishments, is learning to ask for help and then being able to accept that help.  My fellow Spoonies could learn a thing or two. (Humility is still a ways away, sorry.)

Where in your life could you learn to ask for help?

When Diseases Get Trendy

Is it okay to be happy someone got sick?

Let me clarify: I'm not talking about when you are driving along trying to merge onto the freeway only to get cut off by some asshat in a convertible with his comb-over flopping, and you, right then and there, wish for him and his entire family to spontaneously combust, along with his manhood on wheels that is in your way.  Nor am I referring to when I passive-aggressively write ES&D (Eat shit and die, not to be confused with eat, shit and die) under stamps on an envelope containing a check sent to people that don't deserve it-like the IRS, or parking enforcement.  And finally, I am certainly not talking about stupid ho-bags that tart up with gobs of makeup, only to shimmy their stilettos in front of me to get a drink 3 nanoseconds faster, and I look them dead in the eye and say, "I hope you contract several venereal diseases all at once that simultaneously eat your ladybits up while oozing horrific funk down your chunky thighs". Those things are me, helping Karma out.  Karma is like Santa-they can't be everywhere. So my wishes alert Karma to the misdeed.  I'm helpful like that. You're welcome, Karma.

I'm talking about Venus Williams.
She recently was diagnosed with Sjogren's Syndrome (Sho-grins).  Sjogren's is an autoimmune disorder that has no cure. It affects your joints and causes dryness, from mouths to other glands.  Many of the treatments that can help with the symptoms cause other problems (sound familiar, Spoonies?) and it often comes with a side dish of Chronic Fatigue, Fibromyalgia, Rheumatoid Arthritis or Lupus. If you win the grand prize, you get a whole buffet of disorders, something that seems to be quite common with autoimmune disorders.

Venus came out about her diagnosis after withdrawing from the US Open this past August. In addition, she has completely revamped her diet. she has ditched the meat and processed food for a mostly raw vegan diet. (I know I have talked about this before but I will repeat-oftentimes, foods can be triggers for pain, especially in joints. Eliminating certain foods can make some of these incurable diseases tolerable).

And I'm absolutely over the moon. Why? Well, I have no problem with Venus. Nor am I some crazed tennis hater.

I'm thrilled, because FINALLY someone in the public eye has one of these nasty diseases.  Hollywood has all kinds of cancers, Parkinson's, addiction, heart disease-you name it, someone in Hollywood has gotten it and established a fund to help cure it. The vast sea of autoimmune disorders has been suspiciously lacking.  I mean, sometimes they get sick, but if it's linked to an autoimmune disorder, there is little information about it. Certainly no telethons, or drives (Okay, MS has a telethon. But the rest of them, nada.)  
In this day an age (and probably ALL days and ages) money talks.  And money goes to the group that has the most exposure. Hollywood is a key player here, because it is full of people that are copied, emulated, and adored. Which can carry a  lot of weight.  What we need ("we" of the autoimmune community) is a person of clout, one with a voice and a platform to get saddled with one of these crazy-ass diseases.  One of these diseases, that some doctors don't even believe exist.Having Venus join our ranks means a lot of things to people like me. This means people will read about Venus and wonder if what they are going through could be Sjogren's. This means there will soon be more people getting diagnosed, more people getting treated, more people believing. And, most importantly, more money to fund research to find cures and additional treatments.

So welcome, Venus, to the Spoonie Club. We are sad you have joined us-we hate getting new members. But happy that your voice has been added to ours. It's a loud one-don't ever quit using it. We need it, now more than ever.

The 12 Days of Fibromyalgia

It's a beautiful day in Northern California. The sun is shining, the air is crisp. We have a house full of groceries, the week's meals planned, some burnt Christmas cookies and some  homemade candy that seems to have leprosy ready for the snacking. Our tree is up, the 54 pounds of ornaments are crammed onto it, with all the lower ones poised for my darling niece to eat/gnarl/ruin. The kids are giddy with the season (and one is as-of-yet un-medicated, and the other forget his children's chewable meth this morning) so I'm feeling a bit nostalgic. This puts me in the mood for Christmas music.  I got the presets working in the swagger wagon-one station for the lights-viewing, morning drives, more the classics.  The other station has more the campy stuff, with grandparents being mauled by woodland creatures.  All is well in the world.
Except, there is not a song to express just EXACTLY how I feel.  There are tons of songs about the holidays.  But the holidays are just a bit different for people with Invisible Illnesses. Fibro (along with a bunch of other illnesses) takes so much all year long, but it seems more obvious this time of year. The cold hurts, and the fun things you want to plan to do may just have to take a back seat to your stupid illness. Before I get all bitter and depressed, I will move on.

To help commemorate this time of year for all my fellow Spoonies, I wrote a song.
No!, you say.  I had no idea you were such an amazing wordsmith!
Oh yes! I reply.  Not only do I use my skills for snark, but for joyous melodic poetry as well. Please enjoy, share, sing aloud. And if you wish to change the lyrics to suit another illness (or to be way less appropriate for families) please do so, with my regards, while always citing the original, genius source.
Grab a hot cup of cocoa spiked with Grand Marnier, and listen in.

Hit it, Maestro.

The 12 Days of Fibromyalgia

On the 12th day of Fibro, my illness gave to me:
12 Acupuncturists poking
11 Medical billers billing
10 pills a popping
9 Masseuses rubbing
8 Doctors doubting
7 Wait, where was I?
6 oh yes, doctor's co-pays
5 bars of chocolate
4 heating packs
3 shoulders to cry on
2 antidepressants
and a legal battle with disability

:::deep bow:::

Do you think Rhianna is available?

Doctor Month

Health Update:
We are almost coming up on my diagnosis anniversary. What an almost year it has been.  I still don't have very many answers.  I have tried many things, found some successes.
This coming week, I have a few appointments: I follow up with a Neurologist for my sleep study, I follow up with ANOTHER Neurologist for my memory problems.  I also meet with my Rheumatologist at the end of the month and hopefully he can help with the joint pain that hasn't been helped by the Cymbalta.  I will keep everyone updated!

Gentle hugs and bountiful harvest to my fellow spoonies!

~Aimee