AI G5 – Houston The First 24 – Travel Day

Yesterday was one of those long travel days. I woke up at what most of the civilized world would consider the middle of the night, loaded my cute little puppy paw print duffel bag and backpack into the car and headed to the airport. I was groped at security, forgot I had a pocket knife in my backpack… (duh) and watched the human masses pass by.

I slept on my flight from Denver to Houston, although my dreams were a bit tainted by memories of the scary horse with the glowing red eyes that you pass going into the airport area in Denver. I woke up when we encountered some turbulence. Nothing bad, I’m sticking to my story we were bouncing on solar flares. (I know, I know…it wasn’t solar flares but it sure sounds cooler than it’s cloudy and raining here.)

I hung out at Houston Hobby Airport for a few hours waiting for my AI friends from Arizona. I worked on some different things I have going on away from this Gathering, screwed around on Facebook some and did some more people watching. (There are lots of pretty people here in Texas. I couldn’t help but wonder what travel days are like for those without swollen knees.)

The AZ Crew arrived and after a pow wow of Wendy’s cheeseburgers 6 of us crammed into a mini van type cab. We rode to the hotel laughing over nothing, discussing Arizona politics…and politics in general. We arrived and were met with hugs and more laughter from those already at the hotel. I didn’t check into my room yesterday so I then spent some time with my co-speaker for the session I will be presenting on Sunday going over our plan of attack and just talking about nothing.

Evening was spent having dinner at the Sushi restaurant next to the hotel, stuffing registration bags and then just being together. Late into the evening I piled into one of, if not my best,  friend on the planet’s car and came back to his house where we stayed up talking into the wee hours of the morning.

So 24 hours after I woke up, I fell back to sleep. It was a long day of travel but the benefits were awesome. Soon we head back to hotel where I will get checked into my room, find my roomie, help man the registration table and let the full on immersion begin!

AI Gathering 2012 – Houston Prep Time Part 3

The bag is about all packed up. Almost. I need to toss in a couple more things. Nothing I really need mind you. An extra shirt or two to give me some extra options in case…in case….well…I guess I don’t know why. Because I can. And because it wasn’t 8 hours ago I was wondering if I was going to actually make it to Houston.

I had this mild incident last night and into this morning. Family kinda stuff with my kiddo, and I just wasn’t sure. I was busy having freak outs via text messaging with a couple of good friends and all three of them kept telling me to go…just go. I wasn’t going to do anyone any good-by skipping G5, and besides the session I’ll be presenting, the blog updates and Tweets I am going to need my support system. So I scrambled my little butt off and made the arrangements to feel ok about being gone.

So tomorrow morning I will be up before the sun and headed to catch a bus to the airport. I hate to fly. Truly, hate to fly. Then I’ll hang out at the airport in Houston for a bit until some of my favorite AI Cronies show up from Arizona before shuttling off. Tomorrow night I’ll be crashing with my “Big Brother” and his amazing family. I’m excited to meet his new baby girl and see how big his older daughter is from when I last saw her a year ago. Then Friday…Friday…


AI Gathering 2012 — Houston Prep Time Part 2

I had a long day in the car today, which meant I had plenty of time to think about what, besides seeing everyone, I am looking forward to the most about this weekend. By the time I pulled into my garage I still hadn’t really pinned it down to one thing. My indecision only increased as the night wore on and I had random conversations with others who will be attending.

Information I guess.

There’s just something different about getting the 411 from people who have that first person experience. Be it with a medication, a surgical option, or a holistic approach to treatment. Hearing someone tell you the good, the bad, or the ugly over a morning cup of coffee, a lunch time ice tea, or a drink after dinner…something about that carries more weight than anything I could read in a pamphlet in the doctor’s office, or in a medical journal. I want to hear just how bad the medicine headache gets. I want to know how intense the post-op pain is. I want to know what exactly the mean when they say, “may cause mood swings”. Am I going to be just a little more cranky than usual, or should I warn anyone within a 20 mile radius to duck and cover.

I look forward to hearing about what’s gone in with everyone since G4 in Tempe last year. I want to hear all about jobs, significant others, kids, pets and everything. I look forward to long talks about things I wouldn’t dream of talking about with any other group of people.

About 48 hours from now… let it begin!

AI Gathering 2012 – Houston Prep Time

Someone asked me why I would be taking the time and resources to venture to the AI Gathering this coming weekend. Especially, as they like to point out with it being right smack in the middle of a move between two states, and knowing how hard it is for me to be away from my daughter even more than I have been lately. Well, pull up a chair and I will tell you.

When I was right around 10 or so years old, I think…my memory isn’t what it used to be…My Mom, Dad, Kid Sister and I loaded up into the family truckster and headed for St. Louis and the 2nd Annual AJAO (American Juvenile Arthritis Organization, a group within the Arthritis Foundation) Conference. This group now has a different name, but it’s mission is essentially the same, it’s a group for families with children with a diagnosis of some sort of rheumatic illness, and their annual conferences present an opportunity for the families to come together. It gives the parents a chance to learn about their kid’s diagnosis, how to navigate medical this and that, and to network with other parents. For the siblings, like my Sister, it provides a chance to meet others whose brother or sister may be not quite the same as the siblings of their friends. For the kids with the diagnosis, it’s a chance to be just another kid in the crowd. If only for a few days. That first year I didn’t know what to expect, but I remember I was so, so, so excited. I didn’t think the drive from Denver to St. Louis could go any slower than it did. When we arrived…I was anything but disappointed. From that point on I have attended conferences as a participant, a speaker, and as a co-chair. With each event I have re-connected with friends dating clear back to that year in St. Louis as well as with friends made just the year previous. I’ve also made new connections with each passing meeting.

I have no hesitation what so ever in saying the relationships made at conferences, at these Gatherings, are among the strongest relationships in my life. The people whom I have met have become part of my inner most circle and are more like family than they are simple friends. They are my Sisters, my Brothers. They have been on the phone with me when I am crying, screaming, laughing, or just hyperventilating. They have talked me off some pretty high ledges. And I’ve done, and will always do the same for them.

There is a bond created when we come together, for the 20th time, or for the first time. It’s a bond created through something more than just our shared experiences as patients in the health care maze, or even through more than just our shared experiences living with a rheumatic illness. It’s a shared life. When you sit in a room with 40 or 50 other people who not only “get it”, but who live it…who live what you live day in and day out…that’s something you keep close to your heart the rest of the year.

So what do I tell people who ask me why I would take the time and energy to make the trip to Houston here in a couple of days?

Because it’s not just the AI Gathering 5. It’s a family reunion.

See y’all Friday at the Opening!

Broken Pieces of the Landslide

I had spent the last several nights working on a new, second post for this blog. I had it worked out in my head, most of it anyway. Yet each time I sat down and started to take what was in my head and put it to the keyboard, somehow it all just got jumbled. Jumbled might, in fact, be an understatement.  As I was nearing scraping yet another idea, I posted some random something to my FB page about being annoyed by someone I would really just prefer to have lose my email address, and within seconds my cell phone beeped with a text message from one of my oldest friends, a musician, who reads my posts via his wife’s FB account and who tends to comment straight to my cell, email or home phone. This time it was a link to this YouTube Video:

Yep..damn straight I cried. We’re both, he and I, serious music junkies. He as a musician who owns and runs his own studio. I’m just as much a rabid music freak as he is, I’m just one who gave up on playing instruments far too easily. I’m also someone who goes into all of any serious operations, or medical procedures with my IPod in tow. My last MRI, when the tech asked which CD he could play into the headphones and started listing choices, I just shook my head and handed him my own mix. So, since this friend of mine knows how I get…that probably had something to do with my weepiness. We were tight a very, very, very long time ago. I remember sitting in his basement, on the floor just entranced by his talent and skill. It wasn’t a crush or anything like that. Instead we were the best of friends.

We lost touch and we lost that tightness when I changed who I was for all the wrong reasons. He saw it happen, and he called me on it. Flat out, in my face no holds barred called me on it. And I told him just where to go and what to do with is opinion when he got there. I remember that phone call saying he had blown through his savings account and flown from L.A. to Cleveland to try to “talk some fucking sense” into me. I told him to go to hell. I told him to mind his own business. I told him I never wanted to see him or talk to him ever again. As he got up, put his leather jacket on…the one I had bought him many years before…as he put it on started to walk out of the restaurant, he stopped, turned around, and as he wiped tears from his eyes, all he said to me was, “you don’t mean that Kris…(my nickname in high school)…you don’t mean that, and when you realize you don’t, I’ll still be around.”

Of course he was right. He knew it, I knew it. There was just no way I was going to face up to it. Not then, and not for a long, long time. He was right about everything. I was making a mistake. I was turning my back on everything I was, everything I held important, my friends, the people who knew me best, everything. I didn’t care though. It would be years….years…before we re-connected. By then I was a single mom with a daughter who was struggling with inner demons no human should ever have to deal with, let alone a child. And I was struggling with coming to terms with how my life choices had impacted she and I both. I was questioning everything. EVERYTHING. I was bitter, angry and I hated the entire world. More than anything, I had given up on the idea I would ever be happy, as well as the idea that I even gave a crap if I was happy or not.

I can’t tell you why, or what brought me to track him down. To apologize, to see what had become of his life, to see if he meant what he said that day that and would still be there, all of those things, none of them, I’m not sure.  When I tried to apologize, when I tried to tell him he was right…he laughed. He laughed. He laughed and said to me, “ya know, your still as stupid as you ever were. I’m your friend. You don’t have to ever apologize to me. Am I pissed at you? Damn right I am. But not because of anything more than I’ve missed my friend and I wish you wouldn’t have waited so long to call me.” He laughed.  Then he went on to just listen. Just listen as I cried into the phone until we both had to plug our cell phones in so we wouldn’t be cut off. I just cried. We didn’t hardly say a word. I think the only time he even paused was when his son started to cry from his crib and he didn’t want the baby to wake up his wife. His wife whom I’ve since also become good friends with. Our first conversation, she called me. About a week after that sobbing phone call. She called me and said how much she wanted to thank me for finally calling. How for as long as she had known him he had always worried, had always wondered. She told me how at their wedding, in his back pocket he had a picture of he and I about a week before I left for college, and how that same photo was on their bookshelf right next to the photo of he and his little sister at her wedding. She told me how I better never disappear on him, on them, again. Yep, I cried.

About now you’re wondering what happened. What did I do that had led to a good friend to throw down and say…”what the…??”

I let myself fall into a belief that I deserved to do nothing more than to settle. I allowed myself to think my worth was tied to…tied to who I was tied to. I held onto that belief, I fell into it not because of any kind of societal imprinting or anything like that. I won’t pass the buck quite that easily. I fell into it, I held tightly to it because it felt safe. In some ways, even when things entered into the darkest and worst of places, I could justify everything; and I did justify anything by not just telling myself I didn’t deserve any better, but also that I was even lucky to have what I did. After all I wasn’t alone was I?

I thought all of this, I believed it, I internalized that whatever happened was something I deserved. I deserved to give myself up to a bad relationship with a significant “other”…to friends who were anything but, and to just people who were just there not because they mattered. What I didn’t do was give myself to myself. Which is what I have finally done.

I didn’t finish my postgrad work, I didn’t spend countless hours studying and doing secondary research, I didn’t get out of that horrific relationship; I don’t get up each day and try to accomplish at least one thing, regardless of how much my body hurts, regardless of just how bad I might feel…I don’t do that for anyone other than me. Because I do it for myself now instead of anyone else I am creating a better environment for my daughter, for my family and friends who I love, and for those who will come into my life in the future.

Would I have fallen into that place I did had I not grown up spending hours, days, weeks, months in doctor offices, hospitals, or perceiving that I was consistently a few steps behind everyone else? I’m not sure, honestly. I’m not sure. Maybe. Maybe not. There’s so much in our lives, from the time two cells come together until we wave goodbye to this corporeal existence that shapes who we are that there’s no real way to answer that question. It certainly contributed, but I’m just not comfortable to say my self-esteem issues, my past somewhat not brilliant life choices can solely rest at the feet of my arthritis. We are, after all, beings with free will.

And before any of my professional colleagues start bombarding me with emails, or blowing up my phone with texts with, “yes but…”, we’ll save that debate for our next middle of the night Skype session. (Joka meidän täytyy lakata tekemästä niin että voisin saada täyden yöunen. :) )

Point is, I walked away from who I am, I walked away from what I hold true, because I had this belief that because of who I was…who I am…arthritis, tattoos, purple highlights, bookwormish, video game nerd, all that made me wrong somehow. All together I was not good enough to deserve better than hiding in the lie of being someone else. In order to make others around me more comfortable. Others who were never going to be happy with who I was, real or pretend.

Where does this leave me now. Well, it leaves me with me. It leaves me with not hating the things about me I spent so long despising and trying to push away. Instead, it leaves me with appreciating that it’s not my job to make anyone more comfortable. Not in regard to my arthritis, not in regard to anything about who I am or what I believe.

This…all this…is me…and…

“This is the last smile
That I’ll fake for the sake of being with you

(Everything falls apart
Even the people who never frown
Eventually break down)
The sacrifice of hiding in a lie
(Everything has to end
You’ll soon find we’re out of time left
To watch it all unwind)
The sacrifice is never knowing

Why I never walked away
Why I played myself this way”

—- “Pushing Me Away” – Linkin Park from the album : “Hybrid Theory”

Let Me Have What’s Left…

At 2:25am sleep should have long ago found me. Rotted flowers knows I’m certainly exhausted enough. Pain has a way of doing that to a person. It exhausts you. It makes every breath, every blink seep out of you like last weeks squishy tomatoes. And you would think after 37 plus years of it I’d just be able to suck it up. That’s what society expects anyway. To that…to that as sit here in bed with my laptop on my legs acting as not only a therapeutic outlet, but a heating pad of sorts…to that I say “Fuck You”. Unless you have lived it, I don’t really want to hear your grand insight.

What a way to start a new blog eh? It is what it is. I’m not here to sugar coat it, I’m not here to make anyone feel better about their life by thinking, “at least I don’t….” Yea…great for you, here’s your trophy. Go ahead and put it on your mantle.

And I know that reads like I’m this horribly angry, bitter soul. I’m not. Really. I promise. Ask my closest friends, ask my Sister, I’m not. I don’t hide from the world. I’ve been and done more than most people without a chronic pain/autoimmune based illness have. I’ve been to 49 out of the 50 States…Alaska being the only one left to hit, I drove my Subaru Legacy up and back down the “Devils Slide” in Moab, Utah…a hill typically reserved for Jeeps and jacked up 4×4’s, I’ve made climbs in the Colorado, Utah, Idaho and Montana Mountains which would intimidate other climbers, (did I do it without adaptive gear, or without some help from friends, of course not, but I still did it.) I spent the winter of 2005-2006, less than 4 months post total knee replacement, with the added bonus of being a single parent to a 1-year-old daughter and a full-time job, working several times a week with a repeated Silver Medal Paralympic Cross-Country Skiier from Norway. My only reason for not continuing with that training was my commitment to my daughter, something I don’t at all regret. Miss, yes, regret no. I’ve gone as far as academically possible, not because I’m all that smart necessarily but because like the climber’s answer to the question…”Why do you climb mountains?”….Because it was there..I did it, like I do everything, because “it’s there”.Those things were there and I’m always, no matter how cranky I might get, not matter how much stiffness and pain I’m  experiencing, those things were/are just…just…just there. So no, I’m not the bitter crabby person those first couple paragraphs make me sound like.

This illness, this disease has taken so many things away and out of my life. I won’t…I refuse to let it take everything. Not like it’s taking sleep away from me tonight, as it did last night. As I hope it doesn’t tomorrow night.

What has it taken? It has taken a bit of my soul, and it has taken a lot of my heart, and it has taken far too many friends.

But maybe I should start at the beginning…

Before I hit my 2nd birthday I had already had my first surgery of sorts. I had what they thought at the time was a tumor of some kind removed from the back of my right wrist. Hindsight it was more than likely something called a synovial cyst. Then at about 18 months I was at day care/pre-school and my right knee gave out and I couldn’t stand up or walk anymore. That quick, that sudden. My knee(s) just stopped wanting to move, stopped wanting to work. Pretty soon almost every other joint in my body joined in the revolt and so for the next few years I think I spent more days and nights in the hospital than not. Although if you ask my Mom and other family they remember I was refusing to walk before even the knee incident; for no apparent reason anyone could tell. This is the part where you, the reader who is learning all this about me for the first time will start to go down that, “oh you poor thing” path. Well, get off it right now. Because that’s also when I got extremely blessed. So get off the pity path and back on the plain old boring paved one. Our family doc had just read an article about a new doctor in town who specialized in an area of medicine called Pediatric Rheumatology. A call occurred, I was seen by this newer doc in town, and everyone’s fears that I might have Leukemia or some other equally terrifying diagnosis were put to rest. Instead I was lucky enough to “get” Juvenile Rheumatoid Arthritis (JRA), but lucky to find  the best Pediatric Rheumatologist ever, although I may be a wee bias. (Note: The labs, as far as white blood counts can, and often run parallel between the two diagnosis.)  Now is the part where some will raise their eyebrows and say, “Lucky?”. Yes lucky; an idea that on nights like tonight when I could sink deep into depression, sadness, and darkness I have to cling to until my fingernails rip out.

Here’s why.

This disease has taken and taken, and then taken so many things from me. It’s taken my ability to do so, so many things. Such as…as much as I love to mountain bike, and while I used to, the last time I was able to even try was several years ago while my daughter was on one of her last visits she would ever have with her adoptive Dad (my daughter is adopted), I loaded my bike on the back of my hand me down Mercury Tracer…pink none-the-less…stuffed my camping gear into the back seat and headed south from Salt Lake to Moab. This time to ride the slickrock trails instead of bouncing over them. What can I say, I had gotten bored with the trails around Salt Lake. Little Cottonwood Canyon still gave me grief, mostly because of the increase in grade combined with the obstacles on the trail..oh say like…hikers…. :) For the most part though, I was eager to challenge myself to the world-famous Moab routes. It was a busy weekend, and because of work I got a late start on the road so I knew there was a chance I would have trouble finding a campsite. Sure enough, I ended up parked in a turn around off a two lane canyon road, curled up in the backseat after shifting all my stuff to the passenger seat. The next morning I could hardly move my legs, my neck, and my fingers were the size of a pack of Nathan’s Hot Dogs. I managed to get my bike off the trunk rack, but shifting gears, and even putting on the brakes was not only physically difficult, but it hurt like hell. As with other things this disease had taken I added one more thing to that list. And it hurt like hell.

It hurt like hell.

The same as it hurt like hell when I found myself in a marriage with someone who while he promised he could handle it if I “got sick”…read: had a flare up with my arthritis…the same way it hurt like hell when I found out that not only could he not handle it, it was as if I suddenly developed a third arm growing out of my forehead.  He used it as an excuse for his drinking too much, for his screaming obscenities every other day, for lots of things. One night in particular, the night one of the last straws was loaded on an already overloaded back, occurred when he said that he didn’t feel the least bit bad about slamming me into the wall since if I broke something again it wouldn’t hurt me as bad as “your fucking disease bullshit”. Yeah..real charmer that one. Yeah…Semper Fi there big guy…Semper Fi. The next week I found new digs for my daughter and I, making excuses to a lot of those I knew about why she and I were bailing. I made excuses not so much out of a sense of pride, but because…because it hurt like hell and I needed to…I had to process it all inside myself first. I had to let the scars from that hurt heal. I had to get back who I am, who I had hid in order to try to appease someone who will never be appeased with anything, or anyone. And while this disease wasn’t the sole reason things didn’t work out, it certainly provided a great cop-out, and a great excuse for him. At least the one excuse he used the most for his behaviors. Reality check though…he wasn’t strong enough in himself.

I say that because in so many of the relationships in my life, it’s the strength of the person on the other end that isn’t there. Some never had it, but I chose to ignore that. Or if they did have it, eventually it stripped it from them. Stripped it from them in the way that only watching someone you love and care about be in pain can do. The same way as it stripped my strength on that mountain bike trip to Moab. (Although on that trip I didn’t just turn around and head home, I stuck around and met some very cool people. A little life lesson I hope people in my life now, and those who might come later take heed of. Find the strength, the commitment to stick it out, there is always something good to come of anything, no matter how bad, scary or just downright icky.)

But it is what it is, and really, it’s not so bad. As I said, I’ve been lucky in some of the most meaningful way a person can be.

I’ve been all over, I’ve worked at some amazingly cool jobs, I’ve studied my ass off, I have worked my ass off to be the best Mommy I can to my daughter, and I’ve rescued/foster countless large breed dogs who had been mistreated and whom others were hesitant to take in because of nothing more than their size. I’ve been routinely escorted from a parking lot in downtown Cleveland to a Saturday morning class by a homeless gentleman with one arm who never once asked for money, or food, or anything more than just a friend to talk to. Something I was happy and felt blessed to do. Not out of pity, but out of just being a friend, and a human. He was a kind, warm soul who 98% of the people we would pass would do their best to not make eye contact with, let alone speak to. I’ve painted abandoned motel rooms for non-profits providing shelter to women just released from prison, and I’ve been a foster parent to a beautiful little girl whose sister is now that 7-year-old little girl I call my daughter. There is rarely a night that goes by that I don’t, even if for just a moment, wonder if that other little girl is safe, fed and sheltered; but for the time she was in my home I was ever so lucky. I have a wonderful family who put up with what I like to call “my crazy-gothness”. I have amazing friends who not only do the same, but who are there to kick my sorry butt back into line if I start to stray into a dark place. I have a daughter who is intelligent, imaginative, creative and who, I swear, gives the best hugs this sometimes cold, mean world will ever feel. I’m blessed and lucky for all those things.

And I have hope. The greatest thing, next to those hugs that is, I have hope that things will only get….will only continue to get better. All the way around. So while I will have gloom and doom times, while I have times when I feel like warmed over camel poop, times when I want to put the headphones on and shriek into my pillow because the pain is so freaking horrible, there is always going to be, there always HAS to be that hope.

Some of the lyrics of the song above, “Breathe” by Breaking Benjamin include:

“So sacrifice yourself, and let me have what’s left.
I know that I can find the fire in your eyes.
I’m going all the way, get away, please.

You take the breath right out of me.
You left a hole where my heart should be.
You got to fight just to make it through,
’cause I will be the death of you.”

I’d like to dedicate those lyrics, and in fact the whole song, to my good buddy Arthur, which is what my kiddo calls my arthritis…I’d like to dedicate these words to Arthur. You can be such a son of a bitch, and while I wish you would..sacrifice yourself and leave me what’s left, make no mistake my friend, my partner, I will be the death of you, not the other way around.