Just an interesting link...one other abnormality:

http://en.wikipedia.org/wiki/Bicuspid_aortic_valve

Dr. Camacho, endocrinologist

So, this week, I saw Dr. Camacho, the director of the Osteoporosis Clinic at Loyola. She is brilliant and quite interested in my unique situation. She's ordered a lot of tests to be done, and I'll be seeing her for a follow-up in 8 weeks. She will be doing research on treatment of my particular bone density situation. She would like to get in contact with Dr. Bolognese or Dr. Kula, because she isn't sure that a medication for bone density would be safe in someone my age. They haven't been researched very much in young women. Also, she explained to me that our bone density doesn't even peak until age 30, which would mean that my bone density may not be low, but maybe I'm just a bit behind the curve, which would be normal for me, since so many things in my body happen a little later than expected. I even remember having Dr. Grubb explain to me that my life span will be a little stretched out...for some reason I can't recall, which explains why I have always looked so young for my age/developed late, etc.

This weekend is a mix of things. Gus and I had a nice night with friends yesterday, but found out that Buttons can't handle the anxiety of being left alone. She had a horrible night, left our apartment a mess, and hasn't been herself all day. My poor puppy!

A Boring Weekend

Well, on Friday I saw Dr. Shah, which was good. He's got me set up for regular blood tests to check my metabolic levels while I am on Neptazane. Neptazane is a drug, related to Diamox, which is able to reduce the amount of cerebro-spinal fluid produced in the body. Hypothetically, this will reduce the pressure in my head. It's more commonly used in the treatment of glaucoma, in case you wanted to know. The main concern is the risk of side effects is quite high. The most common side effects is GI problems, like nausea/diarrhea/abdominal pain. I am at high risk for symptoms such is these to any medications. Kidney stones are a not-so-rare side effect. Ringing in ears and tingling are also very common.

I understand that every drug has its side effects. I take at least 15 drugs on a regular basis. However, I am one with multiple chemical sensitivities, so I have a higher chance of having side effects. And this is a drug that is prescribed with caution only in necessary circumstances. To reduce this risk, it is started at a low dose, and gradually increased as tolerated.

Hopefully, my body will tolerate it!

Even more hopefully, it will actually do some good for my exploding head. I've been offered this medication in the past, and have avoided it out of fear. But the pressure has been so bad lately. If this can't help, I'll have to wait for surgery. I really wonder what would happen if I had a spinal tap done right now...if my pressure reading would be high...if it would improve my symptoms. It sounds like a nice idea.

Anyway, I saw Dr. Shah to arrange for blood tests to check my potassium levels. I'll be supplementing potassium as much as I can, since it will be drained from my body by the drug.

Another concern is that Neptazane usually decreases sodium levels. I'm already supplementing sodium with salt pills at least 5 times a day. I wonder if I'll have to increase that to keep my blood pressure up. Neptazane is used to treat fluid retention, which would really work against me in my fight to keep blood pressure up! I take drugs to force my body to retain MORE fluid.

Also, Neptazane is listed as interacting with Lithium, because it drains salt from your body, and Lithium is a salt. So, I will have to probably get my Lithium level checked as well, if I want it to stay within the therapeutic range.

It kinda sounds like an epic battle is happening within my body...many forces all fighting against each other!

Well, you can see why I've put off taking this medication in the past.

I'll be starting Neptazane as soon as my pharmacy delivers it, probably later this week. I hope I'll be able to continue working as my body adjusts to the new medication.

Also, Dr. Shah prescribed Darvocet to treat my chronic pain.

On a different note, I'm currently trying to figure out what to do for my joint pain from EDS. I was hoping to start some kind of physical therapy. Interestingly, I heard from June, my nurse at TCI, and she said that exercising the joints is not what they recommend for EDS joints. The only thing she could recommend is massage therapy of the joints. I'm thinking of trying a local rheumatologist or pain management doctor to at least try something.

Today, I need to get an oil change and do some cooking. I hope I can manage this. I couldn't do anything yesterday, because my body was reacting to the flu shot. I barely moved all day. Maybe today will be more productive. If I could just stop worrying. But every doctor has so far overlooked the contraindication of Neptazane and Lithium. So, it's a good thing I pay attention.

I have a horrible high-pressure headache today, plus pain in my jaw and face. My knees are also quite painful. I need help. Here's an article I found about a girl with chiari:

http://www.wickedlocal.com/weymouth/homepage/x1213266330/11-year-old-lives-in-constant-pain-from-rare-disorder

And an informative article about Ehlers-Danlos Syndrome, which is probably contributing to my body pain:

http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=eds3

Oh well...more research...still no help.

Need a pain doctor.

I'm so worried at the severity and progression of my pain symptoms lately. I'm having frequent occipital and temporal headaches. Bad muscle spasms in my back. Sharp back pains. Muscle aches, especially in my legs. And scariest: pain in my knees and hips when weight-bearing. The pain lingers after I've been walking or standing. It could be a sign that my loose joints are wearing thin already. I need to get to the right kind of doctor, and soon. If only I knew what kind of doctor could help me.

I just wanted to re-post some really important information about the prevalence of chiari, and the number of federally-funded research studies:

Number of people with the following conditions:
ALS (Lou Gehrig's Disease): 20,000 cases in US
Huntington's Disease: 30,000 cases in US
Multiple Sclerosis: 400,000 cases in US
Parkinson's: 500,000 cases in US
Chiari: ~400,000 cases in US (probably more as so many new people are diagnosed every year)

And the number of federally-funded studies for each condition:
ALS: 758
Huntington's: 975
MS: 1,702
Parkinson's: 3,585
Chiari: 10

Seriously. This information is available at:
http://www.conquerchiari.org/newly%20diagnosed_files/frame.htm

And even if you leave the government out of it: think of how often you hear about these other conditions. Think about how much money is raised in fundraisers and walks across the country each year. I truly hope that chiari is on that path...the path to awareness. Because awareness truly does lead to more funding for better research and better treatment options. It also helps patients feel less alone when people understand what they're going through...when people take their condition seriously. If there were more chiari awareness, then gradually, doctors would be better educated in chiari treatment, and patients wouldn't have to travel cross-country or farther for adequate treatment. And the few doctors out there wouldn't be alone in their research and treatment. They wouldn't have the burden of treating all of the chiari patients out there...and fixing all of the botched surgeries performed by local "specialists".

However, I would also like to mention that Conquer Chiari's Walk Across America raised $120,000 for chiari research and awareness. This is a huge success. And it's amazing to know how much just my little group of family and friends was able to contribute to the total number. Personally, I was honored to have $525 donated in my name. But with my mom, my aunt, and my uncle walking as well, I'm sure our donations were substantial. I'm humbled by the amount of support I received.

We hope for the walk to become an annual event, and grow every year.

I wrote an incredibly long post, but the computer lost it when I tried to publish it. Now, I'm too exhausted.

I'll just say that I passed out tonight after work, and I feel terrible now. But at least I avoided the e.r.

I'm so mad I lost that post. It's so hard to put my thoughts into words. It's even harder to recreate those words.

I also wrote about fusion surgery being my last realistic hope to feel better in this lifetime. I talked a lot about how I don't believe you need to be super-optimistic to have a chance to recover. I think it has more to do with seeking out new treatments and trying everything you can...not giving up.

I sometimes, like yesterday, want to give up. Give up working. Give up driving. Give up all of the things that cause the most stress and pain.

I'm worried that exercise...even just walking around the house or getting in and out of the car, causes me so much pain. How will I stay in shape or even remotely healthy? Walking hurts. I can't swim with my darn fused neck. I need to find a way to keep my body moving...without using up to much upright energy, and without causing more aching muscles and joints than I already have.

I mentioned wanting to find a pain clinic in the Chicago-area for my generalized body pain that has been plaguing me for some time now.

Finally, I talked more about the "Spoon Story" I mentioned in the last post and how it really helps to describe how I feel. I'll have to retell that another night.