Okay, an update for day 2 of the sinus experiment.
Endonasal Balloon Therapy – Day 1
I underwent my first endonasal balloon therapy session yesterday.
You might ask “what on earth is endonasal balloon therapy?”
ABC = Another Bad Cookie
Every once in a while I have a craving for a tasty treat. I didn’t feel like making an entire batch of cookies, so I decided to see if they had anything at the co-op.
ABC (Alternative Baking Co.) starting producing gluten free products. I used to like their cookies (they are vegan), so I figured I’d give their gluten free cookie a try.
Oh good lord, don’t even waste your money. Read More
Oh Penne al Arribiatta (Breakfast Muffins)
How I miss you.
Justin had asked if I had tested my gluten = pain theory. I haven’t. I’ll be honest, I’m really afraid to.
Going Gluten Free
Okay, so I still haven’t been very good about updating the blog! I need to stick with it, partly because of an “experiment” I’ve been doing on myself. Read More
Back in July, while perusing causes.com (about the same time as my last post, yikes!), I found contact information for a woman named Christine Gould, who is trying to create a quilt for gastroparesis awareness. My brother, Jesse, lived with GP for about half of his life. Christine also has GP.
I had sent her an email back in July, not certain if the quilt project was over with or if she was even still working on it. I didn’t really think much of it after sending the email, as I didn’t get a response. Christine finally responded in October, having been down and out for quite some time due to her illness.
She currently only has 11 quilt squares, but would love to have more so she can move forward with the project.
I know many of you had never met Jesse, have not met Christine, nor had met Kim (a friend of Jesse’s who passed away in 2010 and suffered from GP as well), but I think it would be awesome (and encouraging) if we could try to get as many quilt squares as possible together for Christine’s project.
Here are the guidelines provided by Christine:
I would like for each individual to create a 6×6 inch square. You can design it any way that you want. You can tie dye it, quilt it, stitch it, glue it, glitter it, paint it, etc! Have fun with it. Involve your loved ones. It will be fun to have input on what they would say describes you best! Just make sure it is a fabric that can be sewn to additional fabric on a quilt. I would leave maybe a 2 inch overhang to allow for adjustments to be made to include the entire decorated aspect. Complete your project and mail it to me! One small important detail: Please put some sort of material or barrier such as wax paper or a plastic baggie between the layers and attempt to make the envelope weather resistant, so that it does not damage your square when you send it to me. I live in Maine and the weather sometimes brings water to my mailbox.
If you are interested in putting together a square, let me know and I can provide you with Christine’s mailing address or collect them and send in one package.
I have also added an event on facebook, which is a G-PACT Christmas card exchange. G-PACT is a group dedicated to raising awareness for gastroparesis and other digestive disorders. I know that Jesse was extremely isolated due to his illness for many years, and I used to organize co-workers to send cards at the holidays and his birthday to let him know that people were thinking of him, even if he didn’t really know it.
It would be awesome if any of you will add a few of the members of the event to your Christmas card lists. GP can be extremely isolating, especially at the holidays when much of our socializing tends to revolve around food and drink. Even a small gesture, such as a card or short note, can make a huge difference in someone’s life.
Thank you for being a friend.
It’s been six months of adjusting to Jesse being gone. In fact, it is six months today. The Golden Girls are on and it always makes me think of him. He claimed to hate the show, but in the end, he always let us watch it (even if he did flip through the channels incessantly). But if you listen to the theme song, that was really the relationship we had. We would fight like cats and dogs sometimes, but no matter what, we were friends.
Someone had joined causes.com recently and it was, of course, to raise money for breast cancer. (I won’t really air my ire here about the whole marketing machine that is the Susan G. Komen foundation.) But then I found G-Pact as I cruised through various causes. G-Pact is an organization supporting research and awareness for gastroparesis. Research is underfunded and patients are often mis-diagnosed for years. That was the case with Jesse. We spent years and countless hours with doctors and specialists and for the longest time, they all said he was throwing up because of stress.
For those of you who may not know anything about gastroparesis, here is a bit of information:
“Gastroparesis literally means paralyzed stomach. It is one of the most severe and complicated gastric motility disorders. It can be caused by a number of factors and is commonly seen in the diabetic population. Often the cause is unknown. It is more prominent among females than males. Approximately 5 million Americans, including children, suffer from gastroparesis. In some instances, it appears for a brief time and goes away on it’s own or improves with treatment. Many cases are refractory and do not respond well to treatment.
Gastroparesis is complicated to treat and treatment options are limited. There are few medications available, mostly geared towards symptom control rather than dealing with the underlying problem. For this reason, they are often ineffective.
Additional treatment options include diet changes, certain surgical procedures, and in severe cases, nutritional support through feeding tubes or IV nutrition.” G-PACT
Jesse had idiopathic gastroparesis. He was not diabetic and they never were able to determine a cause. Most of his life was filled with being unable to eat and he was in intense pain for years. Many of the treatments either failed or caused terrible side effects.
When you look at fundraising, gastroparesis research and awareness is pretty much off the radar. Very few people know it exists and often the reaction when you try to explain it is “why doesn’t he/she just eat something?” Fundraising for anything that doesn’t involve breasts or children directly seems to be hard to come by. Since that always seems to be the case, I’ve decided that, going forward, any art piece or craft item I sell, I will donate $1 to G-Pact (if the sale price is less than $1, I will donate 10%).
I have been working recently on new jewelry projects, as well as paper crafts, laser engraved items and more. I also have more projects in the works and will be setting up an etsy storefront soon. Many of the items I have been working on are also posted on facebook. If you are looking for something specific, contact me and I can do custom work as well.
Donations can always be made directly through causes to G-Pact as well.