Thank you to everyone who contributed in every way to our auction. To Playa Physical who, on a days notice took us in when we needed a venue change.(And accepting this crazy girl as a new patient!)
To Los Angeles City Council Member Mike Bonin (@mikebonin) for speaking to the crowd.
To Jim Krause of Nonprofit Ventures (@nonprofitvent) for all of the hard work he put into not just helping to organize the auction, but for his sweat donation: hanging paintings, and then when we were done, putting the venue back exactly as we found it. Also for his beautiful speech about what Chronically Awesome means to him.
Thank you Brian Adams (@brianrossad), our Board Chair, for his tireless efforts for the weeks leading up to the event. He never forgot this mutual goal we all had, and that this was an event for all of Chronically Awesome, the thousands of us.
And thank you Donna Merrick (@healthier_stay). Donna's volunteer work for the foundation, and for accepting our offer to fly out for the event means so much.
To Bruno Gunn(@brunogunn) of "The Hunger Games: Catching Fire", a great friend of Brian's for many years, and now a friend of mine as well. We were lucky to to have him there. He has a busy schedule, but came by even though he had a plane to catch, and supported us tremendously. Having a friend like Bruno on your side is a great thing.
It's been a remarkably odd two weeks. I don't think I have ever gone this long. I can't put my finger on why this stretch of walls, and ceilings and fluffy down duvets was all I could handle. I am not even sure what finally made me walk out the door. But, it happened, and with zero reservation.
Today, after fourteen days of agoraphobic isolation, I just walked out.
Invisible Illness Week: 30 Things Meme
1. The illness I live with is: EDS, Fibro, Lupus, Neuropathy, Bipolar, OCD, Agoraphobia, Generalized Anxiety Disorder, PTSD, various Gyno issues, chronic kidney stones and a couple of other things I can’t think of as I type this.
2. I was diagnosed with it in the year: Bipolar in 1988 and psych disorders started piling on from there. The physical first physical diagnosis of Fibromyalgia came in about 2004. EDS was diagnosed in 2012.
3. But I had symptoms since: some symptoms of EDS I can now look back and see I had as a child. I had chronic pain as an adult after my pregnancy in 1992 but I was overweight so it was always blamed on that. I lost 175 lbs and still had pain so we had to look elsewhere for the cause.
4. The biggest adjustment I’ve had to make is: no longer working full time in an office. I now run a foundation from my home.
5. Most people assume: I am a “drama queen” or I exaggerate my symptoms.
6. The hardest part about mornings are: My body clock wants me to get up at 4 AM and I can’t argue with it. I am up so early, so I am ready for a nap by the time everyone else is up.
7. My favorite medical TV show is: Now that House is gone and I am not watching much primetime tv, I don’t know what is out there. I liked Burden of Proof when I was watching TV more.
8. A gadget I couldn’t live without is: my iPhone
9. The hardest part about nights are: getting comfortable. My pain increases at night or any time I get very tired. I wake every 2 hours on the dot. It’s crazy.
The third largest mental health care problem in this country is Social Anxiety Disorder. It's hard to believe isn't it? How could there be THAT many of us out there? That many of us that are afraid to walk into a room so much so that we become nauseated, hot and sweaty, shaky, dizzy, and thoughts of total insecurity racing through our heads? Or worse, how many of us could there be that would rather stay at home than miss some of life's greatest events? Family birthday parties and weddings, funerals of those loved dearly. How many is hard to count because we do hide. We hide at home, or we hide behind "cover-up" selves.
It is estimated that there are 40 million of us over the age of 18 here in the United States alone. That's 40 million people who feel their hearts beating out of their chests at the very thought of going to the grocery store, or their child's Open House. 40 million of us that dread the thought of going to work each day, that is if we can even get to the point of securing employment. 40 million people that spend $22.84 billion in medical expenses seeking care for physical symptoms that our social anxiety mimic. 40 million of us that are six times more likely to be hospitalized in psychiatric facilities due to extreme anxiety.
We...we... Us... Us..That's what I said there, over and over.
My name is Jules, and I suffer from social anxiety. A rather extreme case that has led to crippling agoraphobia. Of course this would be hard to believe if you only knew me online. Hard to believe that I leave the house only one day a week, and that is to see my therapist. Who would know that this person who, online, is authoritative and friendly, outgoing and chatty. Sometimes I am baudy and downright hilarious. You see, when one has social anxiety, we know that the problems we have intellectually: negative self-talk, our poor self-image, and reactions to being in public, are not accurate. We know when we look back on a situation that everyone was not staring at us, that the world was not crushing down on us at every turn, but at the time, it is very hard or impossible to internalize that.
I am sure that most of us remember from our American history lessons, or at least from a movie or two that barbers used to be dentists. That’s right, the same guy that would cut your hair would pull your teeth. I suppose that a really productive Saturday afternoon would be: getting a haircut, a shave and a couple of rotted molars pulled. Of course that also meant getting drunk, because they would numb the pain by giving you enough whiskey to not care about the procedure.
There was a time in my life when during a given week I would have physical therapy up to three times, I would see the psychiatrist, the therapist, the pain doctor, the rheumatologist and the acupuncturist. When things were really bad with all of my fibroids, cysts and polyps, I was also seeing the OB/GYN more than the normal yearly visit as well. I was having frequent blood draws, and getting other random tests that probably still have me glowing in the dark. Some weeks were so filled with doctor’s appointments that I could not go into the office and had to do all of my work from home. I suppose what I am about to describe was my own, modern day, and considerably safer version of the barber/dentist story. Much more medical, much less Sweeney Todd.