About this Blog

~Hi, my name is Courtney. I was a full time college student, starting to be a dancer, and used to work with kids part time, living on my own until my illness disabled me.
~I became sick in 2005. I created this blog in the summer of 2006 to record my "headache" diary and to see if anyone finds it interesting.
~12/2006 I lost my job then after, failed a year of college.
~2/2007 Dx Lyme Disease with Bartonella: prescribed 8 months of oral antibiotics. I'm not even sure if I ever had the Lyme Disease.
~11/2007 The doctor took me off medicines while I was still improving but not fully recovered.
~6/2008 Dx Chiari I Malformation by a neurosurgeon in Beverly Hills.
~8/2008 Decompression and Lamenectomy helped 80% of my problems.
~2/2009 Dx Hypermobility by an Orthopedic Surgeon/School Doc: Started PT, dancing, going to school and working.
~6/2009 Started working full time as an Infant-Toddler teacher, which requires lifting. Dancing part time, maybe I'll finish school eventually...lol
~12/2009 Dx Chronic Sinusitis: Stopped dancing due to constant infections.
~2/2010 Sinus Surgery & complication: Severe Epistaxis: Became severely anemic.
~3/2010: Dx Ehlers Danlos Syndrome: by Geneticist
~4/2011: Switched jobs, now work at a Pre-K teacher for 3 and 4 year olds. Less lifting!
~5/2011: Started PT and exercising again

Thursday, June 30, 2011

Physical Therapy:
Had my second to last visit with the PT last Friday. We attempted to locate certain core muscles and activate them. (IE clench specific stomach muscles). Realized that even slightly activating those muscles causes tension in my neck. So, PT gave me a few light neck stretches. Basically, he is concerned about the limited range of motion in my neck. Of course he gave me stretches where I look up and I was really nervous about that. But I'm realizing that it's safe now. Its been almost 2 years since my Chiari surgery.

Heat Intolerance:
Last week the summer started...The temps went about 85F. Of course I got dehydrated and ended up sick. Wound up at the doctors office where they gave me IV fluids and tested me for various things. I'm A-OK. My body hates the sun...I got a heat rash on my chest and face, and my body doesn't regulate the temps correctly when it's hot out. So I have to be proactive about that. Wear loose light clothing. Stay covered up and stay out of the sun. Also stay hydrated. I bought some loose long sleeves from Old Navy, all cotton. I'm wearing shorts so my body can breathe better. Also, a desk fan. Bought several Smart Water's because other waters make me want to throw up.

My allergies have been in full swing for a month now. Taking Benadryl and Claritin like theres no tomorrow. Flonase gives me a headache so the post nasal drip is still pretty bad since I don't use it. Due to the issues related, I've thrown up a few times.

Stomach Issues:
This part gets a bit graphic....
I ate lunch about 2:30, threw up 4 hours later. I noticed my lunch in it as well as food I had eaten the night before. Made me realize that I might just have that delayed gastric emptying thing that people with Ehlers Danlos sometimes have... I used to think I had heartburn or something cuz I'm nauseous pretty much every day. I just don't think it's because I have too much acid in my stomach.
When talking to others with EDS I hear a lot that our bodies don't handle some foods very well.

Bug bites:

Bug bites from hell! lol. Something is biting me and I don't know what, but I do know that I'm really allergic to it.

I have at least nine bites on my arms at this point... Needed four benadryl to stop the terrible itching that I have all over both of my arms...If this doesn't get better by Monday I'm definitely needing to have the Dr. give me something stronger...

Monday, June 20, 2011


the heat has been getting to me. its gonna get hotter this week too. came home from work and slept for 2 12 hours now im watching tv with my feet up.

anyone have suggestions for dealing with the heat?

also my ankles and wrists have been unstable for a few days. i've been using my ankle braces and its been helping a lot. i wonder if its from the change in weather...

Friday, June 17, 2011


For my own information:

Immitrex doesn't really do much
Flonase give me migraines
I hate not being able to just rest my chin on my hand.

Also! I forgot to mention on my last post that I got the Sketchers Resistance Runners. They are AMAZING!!! I can walk the mall, disneyland, or down a few blocks! They are great. It feels like I'm walking on a firm air mattress. You know that feeling when walking where you the ball of your heal shoots terrible pain up and you feel it in all your joints, then your body just feels like collapsing on itself? Yah, don't really get that in these shoes. Highly recommended L)

Sunday, June 12, 2011

FB Group

If you live in Southern California and have EDS join the "SoCal Zebra" Facebook group. It's open to everyone.



I've been getting physical therapy since I moved. We've been working on my shoulder muscles. Activating muscles I've never used and relaxing muscles I've used too much. It's harder than it seems. Physical therapy has made a difference but I'm not sure how much difference it will make. Since I need to use the proper muscles in my shoulders to do any other exercises I need to keep up with this.

Also, I've been trying to work on my core muscles. I need to do that more. Both shoulders and core muscles are the basics to exercising. If I don't have those in order I'm in trouble. I've put on some weight and I need to get toned.

I bought a DVD that will teach me Tai Chi. I will get it and try it and then I will post here how it works out. Also, I tried the elliptical machine at my boyfriends gym. As long as I don't work my arms/shoulders it helps me with my cardio. I start at a 2 or a 3 and go for 10-15 minutes. I might get an old school gazelle machine to keep at my place to use instead of going to the gym.

I've told several people in my family about my condition hoping they too will look into whether they have EDS. My sister definitely has it, I think my cousin does as well as my mother. We won't know though unless they actually get the blood work done.

I really need to take my calcium and vitamin D. I don't want any bone density problems later that they say EDS can cause. But, the pills are a pain to take since I get nauseous quite often. I wish they had it in liquid form...

Tramadol has been my life saver lately. It gives me this euphoric feeling that keeps my brain from properly recognizing pain. My migraines only trigger I have found has been pain. As long as my pain is down my migraines go away. Kaiser has stopped covering Maxalt, so I really need to keep my migraines from coming.

My lidoderm pain patches work wonders on my shoulders. I only fear that I will have to use them longer than I really want to. I don't want to keep wearing them throughout my whole life. I really do want to get some control over my shoulders! Very frustrating. At least it's not a pill and doesn't get in my blood system.

Fructose Malabsorption:

This diet has helped significantly. I just avoid things such as bread and apples and turn to things such as rice and bell pepper. It's not too bad since I preferred those things anyways. I had some mishaps with protein bars...oops. stay away from those. Also I ate barbeque chips today, that was a no no.

I used to feel quite often that my body felt depleted of something. Now I realize that is because my body wasn't digesting the things I was eating properly. Now that I'm getting most of my nutrients to stay in my body rather than leave as quickly as it used to, I feel much better. I have more energy to use throughout the day.

I love love to bake. I actually prefer baking to cooking. The only things is now I realize my body can't handle sugar properly. My boss recently made a chocolate cake using yogurt. I ate the cake and felt fine. I'm really excited because this gives me a whole new area of baking sweets that my body can tolerate! I'm a much better baker than I am a cook so this is good news. :)
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