Book Blog Tour Starts Soon

I’m so honored to be a part of Kathryn’s book tour. Keep your eyes peeled for her wonderful guest post! :)

allergictolifemybattle

WOW – Only six more days until my Book Blog Tour begins.  I am very excited to be hosted by twelve wonderful bloggers, some of which are ill with chemical sensitivity like me, others have different invisible illnesses, and some are fellow authors and writers.  As I was working on my introduction posts for the tour stops I realized that I had left Rachel off my list.  This has been corrected.  Sorry Rachel.

My wonderful eleven bloggers are:

Amanda from celiac and allergy adventures

Amy from an allergic foodie

Christine from bored sick

Cynthia from black lilac kitty

Jen from jen owenby

Katie from connective tissue disorder

Lindsay from dysautonmiac

MCS Gal from sensitive to chemicals

Molly from based on a sprue story

Nonnie from nonnie writes

Rachel from do I look sick

Sonda from sondasmcschatter

All of these women write beautifully and I am grateful that they are willing to allow me and…

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May – an awareness month for many

May – a month of awareness!

allergictolifemybattle

May is National Awareness Month for MCS (multiple chemical sensitivity).  I learned this fact last fall when the Jennifer Parker Foundation was announcing it’s plan for a Walk Across America to raise awareness for MCS.  The walk is scheduled for this coming Friday, May 5th, 2013.  I had signed up with all intentions of organizing a walk in my community. Too many things began to conspire against me doing this (trying to get enough support, the winter weather making meeting with organizations outdoors to begin to raise awareness about this walk and our cause was impossible, and my book progress was lagging behind and I needed to focus everything on it).  Next year I hope they do another one and I can participate.  I am finally feeling human and like I have a brain of sorts.  I hope to do a proper MCS Awareness post soon.  Other bloggers I follow…

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Vic's Final Journey

I received this email from the Avaaz Community.  It is important enough to repost.  Please sign in on the site and sign the petition.

Dear friends,

4644_g2_3_200x100It’s horrific! A Maldives court just sentenced a 15-year-old rape survivor to 100 whip lashings. By threatening Maldives politicians’ precious tourist income we can save this child and stop these outrageous public floggings. Let’s quickly build a one million strong call, then place ads in travel magazines and websites:
Sign the petition

It’s hard to believe, but a 15-year-old rape survivor has been sentenced to be whipped 100 times in public! Let’s put an end to this lunacy by hitting the Maldives government where it hurts: the tourism industry.

The girl’s stepfather is accused of raping her for years and murdering the baby she bore.Now the court says she must be flogged for “sex outside marriage” with another man, who has not even been named! President…

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A wonderfully written post by one of my favorite bloggers!!

Do I Look Sick?

The night after my first surgery for endometriosis, my then-fiancé wasn’t with me.

I was sick and in pain and scared, and he wasn’t with me! I was pretty steamed about this. I had never needed him more, and where was he?

Well, my beloved has the misfortune to be an actor. There’s no cure for that either. And at the time, he was playing Fred and Young Scrooge in a local production of A Christmas Carol. It was his first paid gig, and the show absolutely could not go on without him.

a christmas carol scrooge pocket sandwhich theater toby meeks

And I was really proud of him and all, but I couldn’t help but feel like my torso getting sliced open was kind of a bigger deal.

Now, don’t get me wrong. He was wonderful through everything. Even knowing that I’d be sick forever, he still wanted to marry me. And not only that, but he’d held…

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In the woods.

Hey guys, nothing new to report with me. I’ve been having a rough couple of days so I’ve been laid up a lot, listening to music and thinking about life. I’ve also been working like mad on the tattoo that I’m drawing whenever I can.

Come down from the trees, you’ve been gone too long.
Return to the house that you came from.
Turn back on the road, you traveled upon.
I stand where you stood, come out of the wood.

Matthew and the Atlas – Come out of the Woods.

Rare Disease Awareness: Charcot–Marie–Tooth Disease

February 29th is Rare Disease Day. In the hopes of raising awareness I pledged to write one post each day of the month of February about a different rare disease. This is the fifth installment.

Day 5 – Charcot–Marie–Tooth Disease

What is it? Charcot–Marie–Tooth Disease (CMT) though rare, is still one of the most commonly inherited neurological disorders. It’s estimated to effect about 125,000 people in the U.S. and 2.6 million people worldwide. CMT is an inherited disorder passed down through families and capable of taking different forms from person to person. Characteristically, as the disease progresses, loss of touch sensation and muscle tissue in ankles, feet and legs will become continuously worse.

What does it look like? Charcot–Marie–Tooth disease can effect individuals of both sexes and all races and ethnic classes. Most commonly patients with CMT present with high arched feet, claw toe (curled toes) and foot drop earlier in the course of the disease. Foot drop is when a sufferer begins to drag their toes along the ground when walking or avoids this by bending their knees to lift the foot higher during each step.  Foot drop occurs due to muscle weakness or damage to the peroneal nerve. Muscle atrophy (wasting) of the legs can lead to what is known as “stork leg” or an “inverted bottle” appearance.

What effects does it have on the body? As CMT progresses it has the potential to effect vision, hearing and breathing as well as the neck and shoulder muscles. It’s not uncommon for a patient to present with scoliosis and/or malformed hip sockets. Not only this but chewing, swallowing, speaking and gastrointestinal problems can also be present. Neuropathic pain is often an effect of CMT, it’s severity varying from person to person.

How is it diagnosed? There are a few different ways that CMT can be diagnosed. Examination of symptoms, electromyography (nerve reflex test), biopsy of the nerve, and DNA testing can all possibly be used.

Where can I learn more? To learn more check out the National CMT Resource Center and the Hereditary Neuropathy Foundation as well as the Charcot–Marie–Tooth Association‘s  or the National Institute of Neurological Disorders and Stroke‘s websites.

Melatonin and It’s Many Health Benefits

Melatonin is a hormone produced by a gland in the brain known as the pineal gland. Darkness triggers the production of the hormone where as light inhibits it. For those who aren’t producing enough naturally then melatonin is available as a pill similar to your average vitamin.

 For years I’ve been aware of the beneficial effects that taking melatonin to help you sleep can have. Though, it never worked on me years ago I just recently found out that you could up the dose much higher than the one I had originally received, and to my surprise I’ve found that sometimes it really does help me fall -and stay- asleep. I’ve found that when taking melatonin as a sleep aid it’s important to remember to stick to routine. I take the needed amount and then brush my teeth and go straight to bed. This seems to help initiate the effects so that they work properly.

What I didn’t know about melatonin was that it has many other surprising health benefits. For instance some studies have shown that melatonin is an effective preventative treatment for both migraine and cluster headaches. For those in this particular study 3 mg of melatonin was given each night before bed for a period of three months. At least two-thirds of the patients in this study saw a reduction in the severity and frequency of their headaches by at least 50%. If you suffer from migraines then you know that this change is a significant amount.

This hormone has also been found to help fight multiple cancers including breast and liver cancers as well as small-cell lung cancer. Melatonin has also been used in treating mood disorders (with positive results) as well as gallbladder stones (it helps reduce the amount of cholesterol within the gall bladder), Alzheimer’s, delirium (in elderly patients) and protection against radiation among other things.

So, it would seem that melatonin could make a huge difference in many lives and the fact that it’s a natural substance makes it all the better.

{I am not a doctor and the medical definitions and descriptions featured in this blog post do not and should not replace those of a medical professional. They are merely there to help give an idea of my situation and experiences. If you are in need of medical advice see your doctor.}

“Health is the first muse, and sleep is the condition to produce it.” -Ralph Waldo Emerson

A Healthy Change

I‘ve been really craving a lifestyle change lately. For the healthier that is. I don’t hate working out, but I don’t love, love it either. But I’m hoping that’ll all change soon. I’ve been eating really healthy for the past week (I’ve done so in the past but it never seems to stick!) and I notice that I not only feel better in general but I also feel better about myself.

I’ve recently started to go to the gym three times a week and have an elliptical at home. It’s been really hard to get back into going to the gym. A lot of the times I’m supposed to or want to go I have a havoc wreaking headache or haven’t slept, etc. But I finally realized that it doesn’t really matter because no matter what I’m always going to have a reason why I don’t feel good enough to go or why I don’t want to. Eventually I just forced myself to go anyways, and once I got there I was happy about it.

Since then I’ve gotten back into my old routine of going once every second day. Sometimes it’s hard to motivate myself about going to the gym because while it’s good for my spirit and my confidence my body always seems to freak out afterwards. If I have a slight headache then by the time I leave I have a huge one. Same with any aches and pain in my back or ribs. The gym seems to irritate those things more. The same goes for how tired I feel. If I’m sort of tired going into the gym I’m absolutely exhausted coming out and for hours afterwards. All of those things are downers on the experience, but I still think that the pros outweigh the cons.

There are special considerations for those with connective tissue disorders when working out, especially if you have aortic root dilation. Since mine is still on the slight side and I’m not on beta blockers yet I’m still allowed to get my heart rate up as high as recommended for a good cardio workout. I’ve only been instructed not to lift extremely heavy objects as that can be too hard on the heart. We also have to be careful because of the dangers of damaging our already weakened tissue. It’s easier for us to tear muscles and dislocate joints than most other people so we need to be aware of what to do and what not to do.

I choose to get my cardio workout on the elliptical because it’s low impact and easy on the joints while still being a good way to get your heart rate up and get your sweat on. I stay on it for thirty minutes and then switch to weights. A lot of those with CTDs have lower muscle tone than others. This is mostly true for me when it comes to my upper body. My geneticist once described my arm muscles as “doughy”. The speed that I can increase my leg weights is much faster than my arm weights. The difference is huge. Sometimes I feel like maybe I am pushing myself harder than I should or am supposed to, but I’ve been given the go ahead by several different doctors so it must be okay.

For those of you with Marfan Syndrome and other similar disorders here is a link to the National Marfan Foundation’s website explaining safe ways to get exercise without injuring your body: http://marfan.org/marfan/2728/

If you plan on joining a gym or something similar make sure you’re educated and aware of how to be safe about it. Talking with your doctor may be a good idea.