Diagnosis: I'm Special

I saw the doc today and she told me I was a very special person. I had to laugh because I knew what was coming...ta da! I have an autoimmune disease that is so rare I can't even find any good information on it! Diagnosis:  Chronic ulcerative duodenitis with duodenal stricture. Translation: Ulcers most likely caused by food allergens (gluten) with the result being my intestines are closing in on themselves. How nice for me.

So, rather than rushing to cut me open in that area, this will be treated through diet and non-invasive steroids (hooray!) In 3 months we'll meet again to see what's what. That's the good news. I still have to have surgery to remove the big apple in my bum, however. The docs afraid there may be cancer hiding behind it but I'm not too worried. I'll see the surgeon next week.

In the meantime I have to visit a nutritionist who is going to tell me "Do not eat flour".  As well I will visit the geneticist who will tell me "You have Lynch Syndrome". (A genetic propensity to have cancers of the bowel and/or endometrial cancer before the age of 50). Needless to say, it's a "been there, done that" moment.

End. Of. Story.

The Flying Shuttles Art and Weaving Studio

I've been volunteering since 2007 with the folks at The Flying Shuttles. These artists are "Outsider Artists" and developmentally disabled. They have amazing artistic abilities and I enjoy spending time with them. Over the years I have had different workshops with them beginning in 2008 with papermaking. From there we did mold making and bookmaking. For the past 8 months or so I've been working with them on different types of printmaking and sewing/quilting. Below see the results of their amazing works.


 Wall Hanging by Jackie

Wall Hanging by Brenda

Pillow by Damon



Pillow by Alfred









Pillow by Brenda



New Job...Old Job

I was offered a job as a mobile teaching artist for Riverzedge in Woonsocket. They are a great organization that specializes in art and community outreach. Find them here:http://riverzedgearts.org/
My job is to travel to various after-school programs in Providence and Pawtucket to teach art. Nice.
Well, no. Not really.

I was assigned to an elementary school to teach an 8 week workshop and I decided to do a painting course which would introduce the kiddies to Piet Mondrian. I showed up for my first day and I was told they didn't sign on for an art teacher this term. Huh. Okay. I called the boss and he didn't know what was up and I went home. No one gave me an explanation as to what happened so I guess I didn't merit one. The following week I went to another school where they were expecting me. Great. So far so good. I had a group of 10 4th and 5th graders...perfect. Yup.     

Nope.

For 90 minutes I was a nothing but a referee. "Don't touch that. Stop yelling. Come here. Sit down. Be quiet. What are you doing? Why are you screaming? Where are you supposed to be?" and on and on ad nauseam.  There was no learning taking place. There was no listening. There was no control.

I completely get it though. Those kids are at school from 8-5:30...they needed to be outside running around and not sitting inside a classroom painting. I just had the unfortunate time slot of 4-5:30 for this class. Can you see yourself at 9 years old being at school all day until 5:30 doing organized activities? It's like a full time job. God I feel really sorry for those kids.
When I sat in the car afterwards I was wrung through. I was thinking that this was a mere 10 children
yet it felt as if I had done battle with 30.

So, a glorified babysitter I am not, so I won't be returning.

Another Bump in the Road

Okay so...I never said my life has been easy. In fact, it seems like I have always:
1. done everything the hard way
2. done everything way too late
3. got sidetracked because of some major illness

Yesterday I opened...wait for it....da da da da! Door # 3. Huh.

Okay so harking back to the 2010 post "In my Dirty Hospital Johnny" http://thepapergirlsstudio.blogspot.com/2010/11/in-my-dirty-hospital-johnny.html
When my life took a nightmarish turn when I ended up in the hospital in Bucharest. So that was the beginning of my sojourn with the "7 Sisters" as my friend Barb likes to call them (7 ulcers). As soon as I came home I went to my gastro gal and she confirms I had not 1 but 7 ulcers (I am never one to do anything in a small way). Okay, so lets deal with it. She suggested this was a bad thing and I should not go into the Peace Corps (I was heading there in 2 weeks time) and I laughed. No WAY was I missing this chance!

Anyway, I'm fairly stringent with my health because of a previous cancer and a family history so I keep up-to-date with all that stuff but things got to be ridiculous on the pain side of things.

Okay, so fast forward to last December. I paid the doc another visit because it had been 2 years since my last endoscopy/colonoscopy. I had been having a lot of pain and just could not stay off the OTC generic Prolisec so I know that the "sisters" are either not clearing up or multiplying. To say nothing of the pain in my ass from a chronic 15 year old fissure I just had to get some relief. (Sometimes I live with pain for so long I come to think of it as normal. Just what the hell is wrong with me anyway?)

Yesterday I had my tests and the docs face was well, not good. "We got some problems here" she says in her accented Italianized English. "We need to fix you". Okay. So now what?  "You have bigger problems in the duodenum. Ulcers are spreading and are bleeding. They are also in the ileum (inside of the intestines)". Then she looks me in the eyes and says "In my 30 years of practice I never seen anything this bad. Never." Gee, thanks doc. But...didn't you get the memo? I ALWAYS do everything in a BIG way. Okay, so this isn't all of it. I also have some kind of monstrous mass in my rectum. "Too big to cut out" says the doc. Nice, I say. "So, now can we fix my fissure"? Okay. We can do that, she said.

Huh. Finally. I have been complaining about this pain for 15 years and have done everything I could to fix it, and now that I have a big apple in my ass it's finally gonna happen. Lovely.

So, now the fun starts. CT scans, surgery (in 3 places mind you!!!) and ANOTHER colonoscopy in 6 months. GOD I hate the day before. Although, now that I think of it, if they get rid of my ulcers, maybe it won't be so painful to have an empty stomach?

Stay tuned interested readers.....