Archive for the ‘Dysautonomia’ Category

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)

Dysautonomia and salt loading

March 19th, 2013 by Carrie, the Just Mildly Medicated gal

Can I have a side of salt with that?

Most people are trying to eat better; I think its residual New Year’s resolutions coupled with The Biggest Loser. When people try to adhere to a healthier diet a common knowledge is to lower your salt intake. When someone with Dysautonomia tries to adhere to a healthier diet we are told to salt load. After having salt brought up in a Dysautonomia message board conversation and seeing we all had a ton of questions on what salt loading actually meant I decided to ask a few questions and do some research.

Now I am no medical professional, just a gal with a laptop, a list of questions and an amazing Dysautonomia specialist. Please ask these questions to a doctor who understands Dysautonomia and how it applies to you so that you are able to find the answers that apply specifically to you.

Why do we salt load?
 
We are trying to increase blood volume. With an increased blood volume the goal is to lessen the drop in blood pressure when we stand up. That drop is called Orthostatic Intolerance and is a chronic debilitating condition that is common with many neurological conditions like Parkinson’s and Dysautonomia.  Many of us take Fludrocotisone, a medication for treating salt loss, to help us retain the salt we are consuming. Salt loading is not appropriate for everyone with Dysautonomia.

How much salt is salt loading?
 
This will depend on your blood pressure and your sodium output. I would say most of my ‘Dysautonomiac’ friends seem to have a goal somewhere around 8 to 9 grams with the higher end being 10 to 15 grams and 6 to 7 grams not being enough to alleviate symptoms for most.
The American Heart Association recommend people not suffering from diabetes, high blood pressure or cardiovascular diseases stay under 3.75 grams of salt per day.

Do I use Sea Salt or Table Salt?
 
The differences between the two are not as dramatic as I thought. I had assumed sea salt healthier than old school table salt but they have the same nutritional value. It’s the process that is different, and also tastes preference. Unfortunately I prefer sea salt but table salt is what I was advised to use. They both have the same amount of sodium but table salt has iodine.

What about salt tablets?
 
I choose to salt load straight from the shaker but many people use salt tablets. You can purchase them at pharmacies over the counter or they will order them for you.

Are there side effects from all this salt?
 
Yes, I personally feel nauseated and thirsty when I salt load, headaches are also an issue. Salt loading should be done slowly over time so your body can adjust.

So now I know the grams recommend for me, how do I read the labels of food so that I know what I am consuming?
 
Boy was this ever the question of the hour. How many teaspoons of salt a day? How many grams in a teaspoon? Oh wait, who cares everything is listed as sodium on packages… what now?

My goal is 8 to 9 grams on a normal day. So I will use 9 grams as my target number.

1 tsp of salt = 6 grams of salt                  6 grams of salt = 2,300 mg of sodium

1 ½ tsp of salt = 9 grams of salt              9 grams of salt = 3,450 mg of sodium

 

So now I know how much, how should I get it? 

You obviously don’t want a fast food diet to obtain this level of sodium, that’s not healthy. There are plenty of higher sodium foods that do have other nutritional value. Table salting your foods is the common avenue. Some other food options are soups, soy sauce, pasta sauces and V-8 juices. I then asked my blogger buddy over at Green Mom and Kids (<~link) for some high salt foods and was reminded of salt water crab! Not my personal favorites but cheeses also are high sodium. I know, I am the only girl in the word that hates cheese.

Do you have other salt / sodium information to share, other questions… please comment.

Chronically Awesome Products

March 13th, 2013 by Carrie, the Just Mildly Medicated gal

I thought you might be sitting around thinking ‘you know I haven’t bought anything for myself lately’, and if that is the case I thought I’d share some of my favorite chronically awesome products.

Right before the holidays my best girlfriend told me about Mud Love Bands (<~link) I fell in love! You can read about how they are a company that gives back by clicking here.

you can make your own wording if you’d like and ordering
5 to 9 of that same word will get you a discount
a few of my other Mud Love Bands

Compression wear… I know, how could any compression wear fall into a favorite products post?!? Many people with Dysautonomia suffer with paresthesia, for some its just part of the deal others its a side effect of the anti-convulsion medications. One of my favorite products helps with this, the Juzo Dream Sleeve (<~link) and gauntlet. Now I have other compression wear, brands and location of compression, but this is my favorite. If you use the link and click on the upper right hand corner of their page “Juzo” you can see the other products they offer.

and I happen to be sporting some Mud Love

Having Chronic Fatigue makes one a bit of an expert of comfort. If my body is going to cause me to be insufferably fatigued no matter if I have 12 hours of sleep or 6 I am going to damn well be comfortable. Your autonomic nervous system regulates temperature, meaning I can be hot and then cold in the same room within an hour. Its like pre-menopausal training. So trust me when I say Cuddl Dud Active Layer tops are amazing! (<~link) Like the Juzo this is a brand I have a few different items from but I love the Active Layer. Side note, best place I have found to buy them in Kohl’s.

here is the model from Cuddl Dud,
she does it better than me today
me sporting my cuddl dud under a robe

Can I have a side of salt with that? I know most people are trying to cut back on salt, I am salt loading. The goal is 5 to 7 grams of salt a day, if labs don’t show enough sodium output its upped to 8 to 10 grams. I know, those of you familiar with salt and sodium levels just freaked a bit. I take Florinef to helps with cerebral salt wasting and tried salt tablets (BARF). Next best line of treatment, Snyder’s Pretzel Rods.

One Dysautonomia perk, this is recommended
okay, down fall is a tad bit of BLOATING

Being at home more often then most people can imagine can take wanting things things you love in your home to a new level. I have a few pieces from an awesome artist at Loquacious Ink (<~link). Talk about a personalized gift!

Do you have a favorite brand of something that you think everyone should know about? Do you love any of these as well? Let me know :)

5 things to think about before saying to someone with a chronic illness (especially if you are an ass)

March 4th, 2013 by Carrie, the Just Mildly Medicated gal

In the chronic illness community we have a lot of inside laughs and some venting about things we hear pretty often. There is an entire website built around the ever so popular reaction of but you don’t look sick. So I thought I would poke some fun at things I have heard myself and have had others tell me people have said to them.

~ The ever popular “but you don’t look sick”

What I rationally know you are saying is “I am having a hard time wrapping my head around the fact that you are chronically sick, you look healthy” (I internally can replace healthy with ‘smoking hot’ if I need an ego boost)

What I hear on a grumpy day, or if you are in fact an ass. “There is no way it can be that bad, you look fine.”

If you can imagine for a minute the last time you were sick, remember that first day or the tail end of it when you were wiped out but had to get your act together to go to work, church or social event? Yeah, that is me on a good day. I can get my act together and with enough time I can get the hair done and the make up on. Please don’t undermine my condition by my effort to have some normalcy.

~ You’re on Facebook a lot / You post pictures a lot (replace with anything done from home really)

What I rationally know you are saying is “you’re on Facebook a lot” see I am not irrational, I might even add an internal “you’re on Facebook a lot and you are hilarious, I look forward to your posts.”

What I hear on a grumpy day, or if you are in fact an ass “Good God have you nothing better to do?” or “You post pictures doing things, it can’t be that bad”.

Yes, I am on FB… a lot. I have it on my phone and iPad which are with me all the time. I spend more time “relaxing” than most so I tend to use things like social media as a main form of social activity. I am not having lunch with friends or making small talk with work friends. I post pics pretty often because if I am putting the effort into getting out it is kind of exciting for me. When I am feeling good I want to shout it from the roof tops, so yep… you’re probably gonna hear about it.

~ My Aunt (neighbor, sister’s friend) had something like that and she got better after eating blah blah (taking blah blah or spontaneously healed after doing blah blah)

What I rationally know you are saying is “I hope there is a chance for you to be better one day” and I do too.

What I hear on a grumpy day, or if you are in fact an ass “you are clearly not doing something well enough because my Aunt/neighbor/sister’s friend is better now.”

I promise that I am in very regular communication with specialists. If broccoli is the cure I am going to hear about it.

~ “At least it isn’t terminal”

What I rationally know you are saying is “it could be worse, you have a lot to be thankful for.” Let me tell you I don’t take this lightly. I cannot imagine the impact a terminal illness has on a person and loved ones. I am thankful that my condition is not terminal.

What I hear on a grumpy day, or if you are in fact an ass “it’s not like you’re dying.” By the way this was said to me by a doctor while in the ER… grumpy day and he was an ass… So is this the new measure on how I should weigh news? So the next time you get horrible news, something really upsetting, imagine the person delivering it adding at the end “hey at least you’re not dying”, seriously! At what point does someone else need to point out that the good news here is that you’re not dying?

~ “You shouldn’t dwell on it so much”

What I rationally know you are saying is “I worry that the focus on your not being well is negative.” See, on a rational level I get what you are saying.

What I hear on a grumpy day, or if you are in fact an ass “OMG this again”.

This is life altering and impacts my family every day, even on my good days. There are many things about me other than my illness. I love reading, I have been an Army wife for more than a decade, I am a mom of four kiddos, I have a new fixation with hair braiding and am a loyal Walking Dead fan.

I chose to be open about Dysautonomia. It was an decision my husband and I made, talking about the pros and cons of letting people know the details. If all you know about me is my illness then kudos to me bringing awareness to someone who didn’t really want to get to know much else about me.

This post was brought to you by dumb things people say and ecards :)