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Published on Saturday, 18 June 2011 19:42
ABOUT JULES:
Hello and Welcome. I am Jules. I am Chronically Awesome. I write to help me, and hopefully help others. My favorite thing to do in the course of self-healing is to laugh. Sometimes that comes out in ways that seem inappropriate, so give me a chance, I promise I will redeem myself.
I define Chronic Illness in a way that others do not. I have an inclusive definition. So many of us live daily with a chronic condition, and when you have one, they usually like the buddy system, and they find another to to play with. I don't just write about my (multitude) of conditions. I write about living with illness, I write about my life.
I was diagnosed with Bipolar disorder my first year of college (waaayyy back in 1987). In my way of thinking, that is when my chronic illness diagnosis began. In retrospect, I was most likely ill before then. I can surely think of many things in my life up to that point that in retrospect pointed to what I will just call "odd behavior".
As to my other issues, I was always the drama queen in the family. If I stubbed my toe it hurt much more for me then the average person. Pain was my middle name. Everything always hurt. I don't think anyone really knew what to do with me, I was the little actress so I was treated as such. I don't blame anyone for that, that's just how it was. It wasn't until recently, until April of 2012 did I even understand why my entire body always hurt.
As I got older I felt worse and worse. I had the physical discomfort of depression, the added stress of a crappy marriage I entered into far too young, and a very complicated pregnancy. I gained 175 lbs in the process of my pregnancy. I had a rough labor, and a c-section. I gave birth to an 11 lb.1 oz beautiful daughter.
My body was never the same.
I had cervical cancer which was caught very early, but it took about 3 1/2 years to finally nail it.
I was finally healthy enough to start working, and took a position with a software company where I remained for 15 years. I became vice-president and stayed with the company until I was laid off in May of 2011.
During all of this, after 11 years of morbid obesity I had gastric bypass. I lost all of that weight in a few short months and for almost a year I felt wonderful. I wish that after 9 years post-op I could still feel the same however, weight isn't everything.
Now with Lupus, Fibro, Peripheral Neuropathy, Hypothyroid, and bipolar I see that the chronic illness community isn't just someone with pain, isn't just someone with lupus or fibro. The chronic illness community consists of all of us that deal on a day-to-day basis with minds and bodies that do not behave as they should. Minds and bodies that for reasons beyond our control give us immeasurable grief.Recently, with the help and support of the Chronically Awesome Community, I was introduced to my new rheumatologist. After terrible experiences with the medical community, I had given up on doctors. Finding a new doctor that would listen, and with the support of my community, I am now receiving excellent care, and have even learned that I also have EDS. Another diagnosis, yes. Another mystery solved: important.
Our lifestyles are different because our bodies and our minds are different. We need places to go to talk about these things. Often what bothers the person with Borderline Personality Disorder can be similar to what bothers the Lupus patient. These things can be the stigma, the limitations, the fear. The other symptoms may not be the same, but chronic awesomeness of our day to day... that's the same. We all have something to learn from each other, and that is what I want to do here. That is What The Jules. That's me.
Other things that are me? I swear a lot, I sing a lot, I love my dogs and my kid and cooking. I cry when I am happy and I laugh and joke when I am sad. I am mixed up and weird and crazy. I am quick to snark but I rarely mean it.
Go out and show the world what being chronically awesome means. And if you aren't sure yet, just remember, we don't use our misery as currency, we are proud of who we are and the only thing slowing us down is a label. Even from a chair or a bed we get shit done. Let's get it done!
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Welcome to the world of Chronically Awesome! You can find more of the Awesome at www.chronicallyawesome.org and www.facebook.com/chronicallyawesomefoundation
The way our "modern" medical system has modernized it's way out of reach of the people that need it. It horrifies me.
I would love to have you go to the chronically awesome org site and read the tips to being chronically awesome, I think you would get a lot out of it, I can tell by your tone that you have an energy and sense of humor. I hope to hear from you again. We have weekly support groups and a podcast with a live chat audience (it's saturday morning ugh)
Thanks for joining us!
Jules
And yes, my Ipad did give me the Elbow Tendonitis.
It took me a month to amass the $ for a cortisone shot.
Social Security Disabillity does not go very far...
Anyhow, glad i read About You!
Belle
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