Posts Tagged ‘WEGO Health’

WEGO Health; And the winner is…

April 10th, 2014 by Carrie, the Just Mildly Medicated gal

WEGO Health, and the winner is (this is where the drum roll should be)

Me!

Seriously …

I know, I couldn’t believe it either.

I was awarded the WEGO Heath Activist ‘Best Kept Secret’ Award. The awesome part about winning this particular award is that I may be a small fish in a big pond but the other fish think I’m doing something good here.

I always thought it was cheesy thing when nominees for anything would say, “It’s an honor just to be nominated.” I have to say it was just an honor to be nominated; it was pretty awesome that as a finalist I even received some WEGO loot!

WEGO Health Finialist
WEGO Health Finialist

 

In all seriousness it did mean everything to me. Before Dysautonomia (Orthostatic Intolerance and Postural Orthostatic Tachycardia) really raised its ugly had I participated in life in a way that at this point I am not able to.

In my 20’s I had a budding career with a nutritional company based in the beautiful Florida panhandle, I negotiated advertising for commercials and loved it. I loved living near the beach with my daughter, I loved my job, and I loved going out. I closed many a dance club in my 20’s.

Then all Officer and a Gentleman style I was whisked off my feet and away from all I knew by the man of my dreams. I became an Army wife. I worked from home for a while before we decided I would stay at home with our daughter and try to have more children. Between deployments and a few more babies there were many great options for volunteer work. When I was in the work force I had reviews, I had promotions, and bonuses, there were coworkers and lunch breaks. It was sad for me to leave that environment but I soon found the life of an Army wife had many volunteer opportunities and I loved them as much as I loved working.

When Dysautonomia started to impact my life daily I lost a lot of the things that I felt made me who I was. Once illness takes over your world shrinks. All of those things that bring achievement and social interaction became too difficult. The things I did without giving it much thought, things like showering, blow drying my hair, laundry, and cooking, those simple things became the big achievements. Let’s face it, no one is giving out gold stickers for a mom showering or doing the dishes.

An organization like WEGO Health giving acknowledgment to health activists is huge, but not only are they bringing those of us who are making attempts to raise awareness together they are supporting us, giving us the pat on the back and the gold sticker to help keep us going on. Just a few examples of WEGO Heath’s amazing support other than the Health Activist Awards are their Press Corps program where they try to help activist attend conferences to gain knowledge and be a more physical presence in the health activist community, and Health Activist Round Table discussions to help connect with others raising awareness with similar conditions.

Thank you for all you’re doing WEGO Health!

I have a few others to thank who have helped along the way. Of course my husband and family both near and far, they have been so very supportive and understanding, I am truly blessed. I’d also want to thank Dr. Randy Thompson, this man has shed so much light to every question I have had… and I have had more than a few. My friends who have listened to my story and shown support without pity, it really means a lot. My nurse Teri who deals with my nonstop chatter every week and has even shared her own story in a guest post. With that I’d love to thank everyone who has contributed a guest post on Just Mildly Medicated, there have been many and I have loved each of you. My online community of bloggers and admins who have shared my story; a few are The Maddness of Motherhood on Facebook, the hilariously witty sick chick over at Living with Bob (Dysautonomia), and my bloggy buddy over at The Pursuit of Normal who has been all a bloggy buddy can be!

Here I am, this is a famous as I get ;)

Wanna see my big win… I warn you, I was a nervous dork…

Want to check out some of those amazing guest posts, here are a few:

Shep’s 30 Q and A on life with hypersomnia

Kat and Beau, Dysautonomia service dog alert team 

Jodi on life with Lupus and Ankylosing Spondylitis

Sarah and Alice Eloise, a service dog team 

Roll Model Gear 

WEGO Wordless (or wordy) Wednesday

April 17th, 2013 by Carrie, the Just Mildly Medicated gal

Liebster Style

April 16th, 2013 by Carrie, the Just Mildly Medicated gal

Liebster Style

You find out what this crazy Liebster Blogger Award is all about by clicking here to see the first time I was nominated.

This time my new Bloggy Buddy Kimmy K from A Mom’s Point of View tossed the ole Liebster award at me, and they are heavy!

Questions from Kimmy K

1. What made me decide to start blogging? Like most people I wanted a place that was mine to write and I hoped others would want to read it.

2. How often do you write a blog post? Well that is tricky, when I am not involved in anything I shoot for a post on Chronic Illness once a week and a funny mommy life once a week. Right now I am in WEGO Health’s Activist Writers Challenge so I am in the midst of ‘assignments’.

3. Do you have children? How many? I have 4 kiddos, as of now they are 18, 10, 7 and 4.

4. What is your favorite book? Ugg this question stresses me out. I read so much that my favorites are ever changing. I’d say pretty much anything Jodi Picoult will stand my test of time. Right now I am reading Cassandra Clare’s newest book and I am loving it!

5. Do you read ebooks or paper? I am almost sad to say ebooks. I love paper but the immediate gratification of having the next book in seconds is just too appealing!

6. How long could you live without electricity? Well, I’ve been watching Revolution and I am thinking it would be life altering but totally doable.

7. One word to describe your personality. hmm, maybe determined

8. Are you a Dog or Cat person? Dog! I don’t dislike cats but I think the relationship between a dog and person is amazing.

9. Have you bought a tablet yet? Yep, I am an iPad gal.

10. Apple or Android? We are a house divided but I am Apple.

11. Facebook or Google+? Facebook 100%, I forget I have a Google+.

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WEGO Health; How The Spoon Theory touched my family

April 16th, 2013 by Carrie, the Just Mildly Medicated gal

Oh WEGO Health you keep me busy.
“Write a comment about someone else’s blog post as your blog post”

The post that has by far had the biggest impact on me would be Christine Miserandino’s Spoon Theory from But You Don’t Look Sick.

Christine was able to take an exchange between friends that has resonated and become identifiable to so many, it was a true gift shared. The Spoon Theory has given a tangible presence to Chronic Illness, something people with medical conditions that are not seen by others truly need.

My husband sat in doctors appointments with me and had an understanding that I was not well, after reading The Spoon Theory his understanding developed and turned into an empathy and support one could only hope for in a partner.

If you are not familiar please take the time to visit The Spoon Theory
Who have you shared The Spoon Theory with? Was it helpful?

A letter to Dysautonomia; WEGO Health Activist Writer’s Month Challange

April 5th, 2013 by Carrie, the Just Mildly Medicated gal

Dear Dysautonomia,

I am not sure you are aware but you are completely overworking my Autonomic Nervous System (ANS) and you’ve caused me to be completely fried. You’ve messed with a system that’s whole purpose is to fine tune the automatic functioning of my organs and help my body maintain stability and balance. I mean seriously, who screws with that?

While I have your attention I have to ask, why are you such an overachiever? I mean you’ve hit the entire system, both sympathetic AND parasympathetic.

I am sure you find it quite exhilarating to have me in a constant state of fight or flight but I am tired. This Sympathetic Nervous System (SNS) hyper drive will serve me well if there is a zombie apocalypse or if I find myself zapped back in time and am a cave-woman. Having one’s body respond to everything as if it is a potential life altering crisis isn’t really all that necessary in this time. You cause people to say things to me like “calm down it’s just the phone”, well no kidding. I can’t help that my heart rate jumps to 125 at the sound. But if that sound were a zombie approaching I am ready!

Never mind, you’ve screwed me even if there is a zombie apocalypse. If my heart rate jumps to 125 at the ringing of a phone imagine what it would do if I were in need to kick some zombie ass. Ventricular Tachycardia and running for your life don’t mix well.

Remember that one time when you decided to kick around with my Parasympathetic Nervous System and keep my heart rate in the 40’s for 24 hours. Yeah, that was not fun. Oh, and that ciliary muscle in my eye… cute trick, very fun house mirror style vision. I would be fine if you just didn’t do that anymore.

Most people have the joy of not even knowing how well the Parasympathetic and Sympathetic complement each other, one gets you a little revved up the other calms you down. But you Dysautonomia, you have me very aware.

The one thing I will give you is that you are ever changing and willing to spice it up a bit. It is amazing the control you have and your ability to multitask. You manage to have my body so confused as to if it needs to panic or fall into a coma that I end up passing out or having convulsions. Yes, all that is because of your nonstop tampering.

I will have to close this as my heart rate is sitting at 52, I am due to take meds, and I am ready to put my head back on the couch and drool a bit.

At your mercy,
Carrie @ Just Mildly Medicated

Autonomic Nervous System Overview
From Comprehensive Health Assessment – Autonomic Balance Analysis

The autonomic nervous system functions to sustain life by exerting control over the following functions/systems:
* Heart (control of heart rate via contractility, refractory states, cardiac conduction)
* Blood vessels (constriction and dilation of arteries/veins)
* Lungs (relaxation of smooth muscles of the bronchioles)
* Digestive system (gastrointestinal motility, saliva production, sphincter control, insulin production in the     pancreas, etcetera)
* Immune system (inhibition of mast cells)
* Fluid balance (constriction of renal artery, rennin secretion)
* Pupil diameter (constriction and dilation of the pupil and ciliary muscle)
* Sweating (stimulates sweat gland secretion)
* Reproductive system (in males, erection and ejaculation; in females, contraction and relaxation of the uterus)
* Urinary system (relaxation and contraction of bladder and detrusor muscles, urethral sphincter)

As Wordless As My Wednesday Gets, The WEGO Health Activist Writer’s Month Challenge continues…

April 3rd, 2013 by Carrie, the Just Mildly Medicated gal

Wordless Wednesday: Post a picture that symbolizes Dysautonomia and my experience.

(yes I know, I have already put words down to explain Wordless Wednesday. I never said wordless was my thing…)

I opted to go personal and show me. I like the think of myself as a person with a lot more depth than ‘the girl with a chronic illness’ but the reality is I also feel split in two.

Dysautonomia has created a line for me and not just the one on my forehead that could use some botox. There is the before and after line, the one that like any major milestone divides life into two sections.

There is also the more ongoing line, the one that separates when you are doing well and when you are not doing well. For me the line is blurry and is ever changing. It is an unpredictable almost tangible guest in my life that has stayed far too long.

These are two sets of photos of me all taken within a few weeks to show Dysautonomia and my experience.

My Pure Autonomic Failure; Up and Running with WEGO Health Activist Writer’s Month Challenge

April 2nd, 2013 by Carrie, the Just Mildly Medicated gal

Every April WEGO Health hosts the Health Activist Writer’s Month Challenge. I am excited as this is my first year. For 30 days WEGO challenges us to share with provided topics.  I will do my best to share each day through Just Mildly Medicated Blog, Facebook , and twitter. (I just oxford comma’d and I liked it) If you are not yet following Just Mildly Medicated all over the Internet today is a good day to start. 

 
I have been diagnosed with Pure Autonomic Failure; it’s a type of Dysautonomia. Dysautonomia is a broad term that describes any disease or malfunction of the autonomic nervous system (ANS). My condition causes me to have Chronic Fatigue, frequent Premature Ventricular Complex, GERD, Long QT syndrome, Inappropriate Sinus Tachycardia and Bradycardia, episodes of non-sustained Ventricular Tachycardia, Orthostatic Intolerance, and a spasm of accommodation which happens in ciliary muscle of the eye.
 
 
I am not always symptomatic which can be confusing for me as well as those around me. It is very hard to understand why I can go to the grocery store and a movie one day and the next walking to the kitchen can cause palpations, sweating, and dizziness. This unpredictability makes it difficult to make plans and causes emotional stress. Although I am an introvert by nature I do crave social situations and do not like being possibly thought of as unpredictable.
 

When your autonomic nervous system is dysfunctional in the way that mine is, both parasympathetic nervous system (PSNS) and sympathetic nervous system (SNS)  you tend to have opposing symptoms which makes getting a diagnosis difficult. For example I have both bradycardia and tachycardia; one is a too slow heart rate and the other a too fast heart rate. Most hours of the day, even during sleep, I have a range of anywhere from 50 to 120. I have been ‘stuck’ in each for more than 24 hours. Although they have opposite feeling neither are fun.

I wish I knew where this originated, its perfect

Like many people with a chronic invisible illness, I was misdiagnosed and treated incorrectly for years before stumbling on the right doctors who understood what was happening to me. When I say stumble I truly mean it too. I went to a walk in clinic for chest congestion the first time a doctor said he was concerned about my heart and nervous system and that I should see a cardiologist ASAP. I remember him scribbling notes on the strip from my heart rate monitor. “Long QT for rate / HR from 65 to 112 in 15 min laying down”. It still seems so crazy to me because that day I walked out thinking that guy was a nut job.

WEGO has asked me to share a few posts I think would be helpful to someone newly diagnosed. This actually means a lot to me because although there is no evidence that Dysautonomia (other than Familial Dysautonomia also called Riley-Day Syndrome) is hereditary; however my mother, sister, and daughter have all been diagnosed with different types of Dysautonomia and now aside from that a friend from High School is going through the diagnostic process for what could be Dysautonomia.
  

 If you find yourself wanting more of my story with Dysautonomia  you could read 30 Things About Me and Dysautonomia or Don’t Let Your Chronic Illness Define You.

 

I have what I have grown to love as the Pacemaker Series. (As of now I am still a NO on a pacemaker) The Possible Pacemaker and Phil Collins, To Pacemaker or Not To Pacemaker and my most popular post New Cardiology Break Up and Some Muay Thai Moves. 

 

Some blogs from others on the Dysautonomia journey that I just love are Musings of a Dysautonomiac and Living with Bob (Dysautonomia)

I hope you have a chronically amazing day!