Friday, August 28, 2009
Tuesday, August 25, 2009
Monday, August 24, 2009
Saturday, August 22, 2009
This blog is a continuation of my Living Chronically blog on Wordpress. I've begun the new blog with duplicate posts beginning August, 2009. To view the older blog and prior posts, just click here!
Why do this? Simply because I'm more familiar with Blogger's platform and it's options, So, we're trying it out for size.
However, I need YOUR help. Please leave a comment with some feedback and be sure to let me know which you prefer.
Oh, and please by all means join so that I won't be the only subscriber. It's quite pitiful.
Thanks for the visit!
I'm going to begin with, "Isn't summer delicious?" No stress, no alarms, no bed times, no parents standing over you
screaming at the top of their lungs telling you to get ready for school. The deliciousness of summer ended for us two weeks ago. Yes, I'll admit that, as a parent, I was ready to get the monsters kids out of the house. However, as the end approached I felt an even stronger, familiar ache in the old tummy.
I knew immediately that this deep ache was my all-time, "A" number one enemy, inspiration of all things therapeutic, of all things yoga, and quite frankly, the evening glass
(es) of wine. Yes, it was (pause for effect) parent of a chronically ill child anxiety.
Now if you're out there, currently perusing this post, you know who you are. No need to fool yourself. In fact, sometimes it's better to go ahead and lay it all out in front of God and anybody else who cares to listen rather than bottling those feelings up deep inside.
Having said that, consider yourself forewarned that the summer has indeed ended and, while I may appear
incredibly elated calm on the outside, inside I am a quivering ball of nervous mush. The anti-christ Jessie has been in school for two weeks now and until today has done splendidly. She has been very tired in the evenings, but has been great about resting. This weekend, her boyfriend, Satan himself Nathan, came for a visit. I have to say that it was an enormously stressful terrific weekend. Jes, Nathan, Wes and friends did lots of fun things, interspersed with tons of rest. I think she's had a bit of a flare (CFS term meaning tiny relapse) but it's probably minor and short-lived. I confess that the timing probably wasn't the best for a visit and the blame falls entirely on the stupid kids for planning this me.
This is a list of recipes we've tried and liked. *NOTE* Each person has different sensitivities. It is up to you to check the list of ingredients you are adding to verify that it is gluten-free. Thanks for stopping by and be sure to check back as I add new recipes. Sauces: Soups: Breads: Desserts & Cookies: Entrees:
This is a list of recipes we've tried and liked.
*NOTE* Each person has different sensitivities. It is up to you to check the list of ingredients you are adding to verify that it is gluten-free.
Thanks for stopping by and be sure to check back as I add new recipes.
Desserts & Cookies:
Pizza Crust Mix:
More to come!
The Short Version of Our History:
This blog is the story of my daughter, Jessica, our family, and a daily chronicle of our experience living and coping with chronic illness. From time to time my posts will be angry, but I'm hoping that they will each contain a healthy dose of humor and hope. You simply can't survive life without throwing in a little self-depreciating humor on a regular basis.
Now the story. Jessie was your typical kid. She loves sports, participating in everything from mountain biking and horseback riding to soccer and softball. She played flute in the school band, and was (and still is) an extremely sociable, straight "A" student.
The first weekend of November, 2005 Jessie, then 12 years old, became sick with what we were sure was mono. A friend had mono at the same time and Jes had been exposed. The difference was that her friend recovered and our daughter didn't. She ended up testing negative for mono - twice.
By December we were having all of the blood tests, MRIs, etc. with no answers. Jessie, bedridden, became de-conditioned and began physical therapy. By the grace of God, we had a young doctor who recognized that Jessie could possibly have Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). We were sent to a pediatric neurologist who, after much trial and error, found the right combination of medication to help control many of Jessie's symptoms. Her initial symptoms were exhaustion, insomnia, migraines, muscle aches, and joint pain.
During the first seven months of being sick, Jessie was either confined to her bed or our sofa. (She ruined our sofa by creating a permanent indentation and we joked that when she got better we would have a sofa-burning party!) Jes was assigned a homebound tutor through the school system and finished 7th grade at home. By June of 2006, Jessie slowly built up the strength to get out of the house a bit and she was eventually able to go back to school in the fall of 2006. She would have relapses many times during the next two years requiring the use homebound tutoring. While she can walk, get out, and attend school, Jessie still isn't able to run or participate in sports at all.
In February of 2008, as a ninth grader, Jessie became ill again, but this time with new symptoms. Over the course of the next 2 months it was discovered through an endoscopy that she also has celiac disease. Simply put, she can no longer have any form of gluten (no bread, pastries, pizza, you get the picture).
In October of 2008, the migraines returned. They were constant and debilitating. We had two trips to the emergency room to break the cycle, relapses of CFIDS, ending with advise from her Atlanta neurologist to get her to a psychiatrist because the migraines continued to return with no explanation. Therefore, she must be depressed. Our gut feeling was that we weren't dealing with depression. We felt that something was out of sync with her system or medication and with the recent diagnosis of celiac, Jessie was due for a complete overhaul.
That is the MUCH abreviated (believe it or not) history of Jessie's illness. If you've stayed with our story for this long, I must say that you are a real trooper and will be provided with stories and updates on a regular basis.