Harmful food additives

http://www.harmfuladditives.com/

Interesting site about harmful food additives. My jaw dropped open when I saw all the chemicals hidden in "natural flavors"!!! I try to avoid "natural flavors" as much as possible. Nothing makes me happier than an ingredient list of 5-10 pronounceable items :)

Hips update

I am getting really aggravated with my hips. Hips muscles I didn't even know I HAD are tight, spasmy and prickly-feeling. Yoga helps, heat helps, stretching helps, but gosh darn it, the muscles spasm right up again :(

My cranio-sacral therapist is able to get rid of some of the tight spots which relieves the spasms, but it is only temporary. Today at work I have my TENS unit on my lower back/upper hip area AND a rice heating pack on my lower back. I am trying to be as discreet about it as I can; I don't like the questions and the looks of pity. I don't want to tell them "Everything in my body hurts, everyday! So I have a rice pack on my butt!!" That's the truth but people don't know what to say. It leads to some awkward moments.

Another section of my brain is trying to figure out - is the hip mess caused by the Chiari, or EDS? Or both? It seems when the cranio-sacral lady works on the base of my skull, my legs and hips release. If so, does that mean the hips and legs will constantly get worse with time? Me no like this.

Sausage = NO

Please if anyone of you ever see me trying to eat sausage - STOP ME. I had three migraines this week after ingesting a few pieces of organic turkey sausage. I thought hey it's organic! It's turkey and chicken! NO MSG! So it should be O.K., right? Wronggggg :( I got so so sick. I was really disappointed. I believe it may have been the nitrite/nitrates (the only "questionable ingredient on the label).

"Many foods, especially cured meats such as bacon and hot dogs, use nitrates to preserve color and maintain microbial safety. Nitrate is harmless, but it can convert to nitrite, which can form nitrosamines, a powerful cancer-causing chemical, in your body. Whenever possible, look for nitrate-free preserved meats. When you do eat foods containing nitrates, have a glass of orange juice at the same time (for instance, orange juice with your morning bacon). Vitamin C is known to inhibit the conversion to nitrosamines in your stomach."

- From http://www.time-to-run.com/nutrition/worstfoods.htm

Also see: http://www.odh.ohio.gov/ASSETS/3D19685391C44EA9909A5937B64B444D/Nitrates.pdf

I find it humorous that some of the food-related websites say nitrates are safe, whereas the environmental and health-related websites say it can cause you to be sick and get cancer. Hmmmmmm.

EDNF Conference

I'm excited - it's official I am finally attending my first Ehlers Danlos National Foundation CONFERENCE!!!

I finally have a friend to go with this year. I feel weird going places alone PLUS I am usually the party pooper who has to go to sleep at 10:00 p.m.! Traveling and special events exhaust me! Then I feel kind of stupid that I'm the youngest yet most exhausted person there. But with the EDNF Conference I think a lot of us are in the same boat. My friend and I were joking that anyone who was not asleep by 9:00 p.m. would be hanging out with the EDSer insomniacs roaming the halls. Another joke I told my hubby was if I accidentally forget some of my pills, all I'll have to do is stand at the front of the room and yell out "Hey does anyone have some (insert medication name here)?!" and all the hands will go up. So I'll be in good hands :)

You gotta have a good sense of humor otherwise you'd be depressed about it.

I guess I sort of felt this way my whole life. Anxious in traveling and social situations because of my health probs. The difference is now I have a sense of humor about it whereas as a teenager I did NOT. My biggest nightmare was being stuck in a crowded room and suddenly have a heart spell. Luckily that never happened. But in college my roommate complained I slept too much!

This conference is coming at the perfect time for me. My shoulders are starting to get to the point I can't ignore them anymore; and my hips are starting to slide out of place along with some of my fingers, kneecaps and Lord knows what else. So I know it will be immensely helpful to be around others with the same issues and get lots of ideas and info. Plus have fun with "some of my kind" who understand me! I am especially excited about getting measured for silver ring splints.

Finally catching up

Believe it or not I am still trying to catch up from our whirlwind of activity over Easter! In retrospect it was probably a little too much to do at once. My shoulders are STILL protesting. They got weak and lazy over vacation and now I'm back at work they still aren't used to it. The problems jump from shoulder to shoulder. One day, my right shoulder will hurt, spasm and thoracic outlet area will be swollen. The pain goes down my entire arm and I don't want to use that arm. Then, the OTHER shoulder will take over spasming, hurting, swelling and migraine on that side. It's nuts I tell ya!

Another thing we did when we got back from vacation was getting a new, more powerful microwave to go over the stove. This will help a lot so that I don't have to walk back and forth so much. Then we put the TV on the shelf the microwave had been on, and slowly got rid of all the junk laying around on the counters (OK, there's still a "little bit" of that left ;) ) This made counter space to get two new barstools to sit where the TV had been. Now my son can eat at that counter, do his homework, sit and watch TV, and he thinks it is super-cool. So while we have added two chairs, the kitchen actually feels roomier and more organized.

This is all to make room for (drumroll please). . .a new dog! My hubby has been bugging me for YEARS to get another dog. Problem is our first two dogs were nightmares and I was nervous. We didn't really research breeds or temperament or anything; we just picked out a dog that looked "cute." What a mistake that was! Not being raised with dogs, I soon found that I did not tolerate barking and jumping very well. I like to have my personal space. Then I told hubby we could get a dog once our son was old enough to pitch in. I already have two cats, two tree frogs, sea monkeys and an "office fish" to care for!!! My son finally decided he was willing to help pitch in with a dog. So we are dog-shopping! I decided a Cavalier King Charles Spaniel would be a good breed for us and we are in contact with a breeder. If all goes well we will visit the dogs and decide if they are right for us.

Exciting but stressful for me. I really hope this will be a better breed for our family. I know we are all older and wiser now about dog training. Just trying not to worry about the things that could go wrong. Hopefully going through a breeder we'll be able to avoid some of the health problems these cute little dogs can have. In a strange way I also feel the dog and I will understand each other since we have the same health issues. To be continued. . .

Chiari on HOUSE Monday, May 3

I received this from my Chiari support groups. She also has a Facebook page set up so she can see how many of us are watching the show: http://www.facebook.com/event.php?eid=322612275834


Three weeks until our big, Chiari "HOUSE" episode! It airs on Monday, May 3, 2010 at 8pm Pacific on FOX and this episode is called "The Choice". I've been so blessed to be able to use my voice, on the behalf of all Chiariians, to help with this episode. I will never forget the excitement, butterflies, and giddiness that I got when I recieved the call from writer/producer David Hoselton and when I walked onto the HOUSE set and met some of the cast and crew (inFeb). It's been an incredible, life changing experience for me, but it also came with a lot of nervousness. I wanted for it to be perfectPerfect choice and for Chiari to be portrayed in a realistic manner as possible that truly demonstrates the pain we live with on a daily basis and how we are treated by those in the medical field and how it can affect our everyday lives. So, I encourage you to watch the show and tell everyone you know as well! That way, we can get the word about Chiari to everyone with a TV. No matter what happens, even if people just hear the word (and how to pronounce it) Chiari and get a glimpse of what we live with, well I'll consider it a success. I'm so grateful to have been a part of the episode and thankful to the HOUSE team. The cast and crew are all amazing, down to earth and caring people who want to use the power of TV to not just entertain, but shine light on these diseases. I had a great time in LA at Fox Studios with my best friend. We were given a personal tour of the lot, the HOUSE offices and then David took us on set where we met some of the cast, hung out with the crew, watched filming of some of the scenes for the episode and were shown around the "hospital". Standing in House's office was surreal! That's about all I can say for now. Yes, I'm a true "Chiarian" and have had 12+ surgeries related to CM in the past 5 years, so if you have questions, feel free to email me! Thanks for your support and make sure to catch the Chiari episode on Monday, May 3!

Peace to you all,
Laura Slyman

I am alive!!!

Well after a long and crazy vacation, I am back to the grind. We took a trip out to Amish Country in Pennsylvania (I had never been there!) The nine-hour trip wasn't too bad for me. It was worse for my hubby who had to drive up down and around the hills and valleys of eastern PA!

The only "glitch" was I came down with a UTI on the way there. I started freaking out because it was 4:30 p.m. on the FIRST DAY OF OUR VACATION! Then I started getting stabbing pain in my back where my kidneys are located!! I was afraid it would ruin our trip. Hubby talked about going home earlier but I didn't want to disappoint our son. So, I toughed it out and decided to do a D-Mannose experiment. I heard that taking D-Mannose in large dosages could cure UTIs. So my options were 1.) Find a pharmacy in PA and have the doc. call in something; 2.) Find a pharmacy and take a bunch of OTC stuff or 3.) Try the D-Mannose.

I took 3 D-Mannose tablets every 3 hrs. for the entire time I was out in PA. I told hubby if I started getting worse we could call the doc. But amazingly for the first day-and-a-half, it almost got rid of my symptoms! It was hard to drink enough water since I was in the car and strange places where I couldn't always find a bathroom. But it kept the UTI under control enough that I could enjoy my vacation. The back pain disappeared, which was a huge relief.

Until... the very last day suddenly it started getting worse and I started really feeling horrible. By then I decided to just tough it out. Then I made the mistake of drinking 2 big glasses of OJ at our hotel . . . OWWW! I would not recommend that. I called my GP while we were in Gettysburg. I told them I would see them bright and early the next morning! Whew, I made it, and got my antibiotics!

It's not a good idea to let a UTI go that long but I was able to test the D-Mannose. It really did take the edge off and help keep the infection and pain at bay. Unfortunately because of the stress I was under and not having enough water handy, it didn't get rid of all of it. But I did learn a good tool for keeping it under control until medical help could be found! :)