Archive for March, 2013

Passing out; location, location, location

March 22nd, 2013 by Carrie, the Just Mildly Medicated gal

Location, location, location… it’s important in more than just real estate!
With hindsight being 20/20 I can tell you I should have chosen to clean the bathroom but instead I chose to bathe my dog.
I was pretty proud of myself, having a goldendoodle can be a lot of grooming maintenance so this was crossing a big thing off the ‘To Do’ list. It also means sitting with a blow dryer for just shy of an hour to get this sweetie pie dry. I actually love this time because its alone time and as a mom of 4 bathing the dog feels like a break.
 After about 30 minutes I felt odd and knew passing out was around the corner. This part of my world with Dysautonomia. It always amazes me how many thoughts I have in those moments beforehand. I slowly take in my immediate surroundings, this is crucial to do as soon as the feeling hits so I can have as much control over where I gracefully place my wilting frame.
Its during this survey of the land that I realize a few things
1. I am in the bathroom 2 boys share
2. This bathroom hasn’t been cleaned in exactly 7 days
3. I can actually see pee at the base of the toilet
So I wake up and honestly can’t decide if I think its funny or terrible. Obviously both because I took this pic when I came out of it so I could show you how gross it was.
My husband just saw the gross side of it and cleaned the boys bathroom when he got home, he is awesome. I still think its kind of funny.
Cute Goldendoodle pics to make you less disgusted at the state of my boys bathroom…

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 :)

Friday’s Letters; A Letter to My 16 Year Old Self

March 8th, 2013 by Carrie, the Just Mildly Medicated gal

Dear Me,

Sweet 16, I have so many things to share with you but have been mindful to not to give too much. We really don’t want to change the course of things in any major way. You actually end up doing quite well. I will say quickly that your hair, in all its big glory, is going out of style fast. I know, hard to believe! You should go to a stylist, the one your step-mother knows, really talk to her about your hair. The sooner we move on from this teasing thing the better.

Our birthday makes us 16 before other people in our grade. You could be driving and working in your freshman year of HS… I mean I know you’re not but just a few suggestions. Driving and cash would be helpful with several things around the corner.

In all seriousness, you are at a time in life before some big life altering decisions have to be made. Future you will always look back on this time as the easy fun time before things get real. Enjoy it, make goofy noises with your BFF in the hall way and love the feeling of the cool-kids spot in the back of the school bus. You’ll need these memories later, they serve us well. It would be nice to make a few subtle changes that could really help us out though. The boy, yep that boy, stop needing him. He doesn’t define you and surprisingly not only does he not want to but its the thing he dislikes the most.

Also the lying, I know it’s hard, but you have to stop. You’ll learn much later that you do it as a coping defense. I know you; you’re reading this and saying ‘I do not lie’and I know you aren’t doing it much right now because things are good, but you did and you are about to start again. Hon, I am you and know that you are lying to yourself most of all. It’s hard to believe right now but you are good enough without the extra added rewrites to things you keep giving. If you could use the creative rewrites you give to your life and put them on paper with fictional characters it will serve us well later on. I would appreciate it actually; I know you’re afraid of not being good enough but if you start writing the way you want to now I would consider it a personal favor.

Take the time to listen when your friends are talking to you. Again, you are so concerned with if they like you or not that you are not hearing them. I can’t name names because I don’t want it to change your relationships and nothing you do can actually change the events but as of right now you know someone that’s been abused, several actually but someone in particular you’d never expect. You know someone who is considering suicide, and they’ll do it. You know someone who will battle cancer and someone who will face every day with a chronic illness. You know people who will live abroad, run marathons, report the news and become soldiers. These are real people that you have been given the opportunity to get to know, don’t waste it. Oh, and take more pictures.

You should pay attention and really promote safe sex. A lot of people you know are going to end up having babies in the next few years. None of them will regret the amazing children they have and maybe that is exactly how it is supposed to be, but still… no condom no sex. Just an idea…

Be kind to your kid sister. Being a sibling is actually a very important role and she wants you, needs you, to pay attention. She is a great kid with a big heart that only grows bigger in time. Oh, you’re going to have another sister too. We will address that in your 18th birthday letter.

You are about to leave your small town, and I mean a lot sooner than you think. It will be abrupt and you don’t have the coping skills for it. Part of you is about to break, I am sorry but back then I think  I would have wanted to be prepared so it’s the least I can do to give you a heads up. It won’t last long, well forever to you but your Sophomore and Junior year in reality. When you come back everything and everyone will have grown and changed during the time you weren’t there.  When you realize this another part will break and to be honest if we don’t find a way to cope a part of us will be frozen and confused about people and expectations for a long time. Find words for what is going on; say them, write them but most of all share them. It would be a good habit.

By the way, your parents (including step parents) are real people, they have had complicated relationships and life experiences. You can talk to them. If you tell them how you feel (not the dramatic rewrite that sounds like a slightly more marketable after school special version of how you feel) it might be easier for them to act in your best interest. You can’t embellish, act, erupt and shut down and expect people to understand who you are.

Just so you know, keep on being a hopeless romantic.  You really will be swept off your feet by a good looking faithful man who will love you not only despite all your flaws and Carrie-isms but crazy enough he loves you for them. He will support you, forgive you and cherish you. It doesn’t mean it’s all easy, but when you love someone and they love you back it isn’t chaotic or a battle of wills. So please say goodbye to the wrong ones a little faster.

I know, I know. You want to wrap this up so you can listen to the Top Five at nine and try and record your favorite song of the moment, maybe The Humpty Dance from Digital Underground or I Wanna Sex You Up from Color Me Badd, oh or is it Losing My Religion from REM.  By the way you still know all the words and get supper giddy when any of the songs you listen to now come on.

You are awesome!

Me, or You… whatever

PS I almost included a pic so you can see how things turn out but at 16 the image for real happily ever after might look a little… well not what you have in mind at 16. You’ll just have to wait and see.

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 :)

Dysautonomia; Celiac Disease; hypoglycemia; Rare Disease Day

March 1st, 2013 by Carrie, the Just Mildly Medicated gal

This Guest Blog Post is from a teenager in my very own town. Our coming into contact was one of those odd connections that a few minutes difference or one conversation change and we’d of never known about each other.
After a doctors appointment I called my husband to let him know how it went. He was getting ready to go into a meeting but was able to get the update. While in the meeting he mentioned to a colleague that I had been diagnosed with Dysautonomia, something called POTS. This colleague couldn’t believe it, she told my husband how her daughter has POTS (postural orthostatic tachycardia syndrome heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing).
Thanks so much for sharing on Just Mildly Medicated!
 
 
1. The illness I live with is: Dysautonomia ,with digestive problems, heat and exercise intolerance,crazy heart beat and gerd.  I have a cranky pancreas (some times reactive hypoglycemia, sometimes diabetics/pre- diabetics, sometimes chronic hypoglycemia). I am learning “disability not other wise specified” I also have food allergy’s and intolerance as well as celiac disease.
 
2. I was diagnosed with it in the year: 2011 
 
3. But I had symptoms since: 2010, some I’ve always had. 2012 for food allergies
 
4. The biggest adjustment I have had to make is: Not being able to go, go, go . I often cant keep appointments because I never know if i will feel good or not.  Practicing extreme measures to avoid cross contamination of my food. If I touch something that has been touched by food that is not safe for me to eat then touch my food, and eat it i will get very sick. Being prepared to treat hypoglycemia when not at the house. 
 
6. The hardest part about mornings: Getting motivated to face the day, especially fixing breakfast. And the indigestion and bed taste (gerd) in my mouth I often wake with . 
 
7. My favorite medical TV show is: I don’t watch medical TV, but does Dr. Pol count. 

 
8. A gadget I couldn’t live without is: blood glucose meter. And for my sanity (or lack of ) a lap top. 
 
9. The hardest part about nights: Getting my blood sugar stabilized to go to sleep. 
 
10. Each day I take: no pills
 
11. Regarding alternative treatments: I prefer the normal ones (like eating salt) over pills, but roll my eyes at the ones that say things like “we can cure your diabetes with  this herb and you can eat junk food”. 
 
12. If I had to choose between an invisible illness or visible I would choose: invisible. On a good day, it can just be a good day with minimal time spent on my illness, not constant stares and pity. 
 
13. Regarding working and career: I’m not old enough to work ,but I’m not looking forward to that when I am of age. I can barely get to a doctor appointment much less act fine for many hours a day.
 
14. People would be surprised to know: How much goes into eating or an outing. 
 
15. The hardest thing to accept about my new reality has been: Not doing a hole lot to avoid over doing it. 
 
16. Something I never thought I could do with my illness that I did was: There is nothing I have done I didn’t think I could do. 
 
17. The commercials about my illness: I haven’t seen any. 
 
18. Something I really miss doing since I was diagnosed is: Well a official diagnosis didn’t change what I can and can not do . What I do miss is being able to do a bunch in one day, and  eat with no worry of allergens. 
 
19. It was really hard to have to give up: Being able to do what ever I want like show horses all day in the heat, do strenuous horse chores (even more when its hot out). 
 
20. A new hobby I have taken up since my diagnosis is: Being evolved in the illness online community, not actually posting but reading others. 
 
21. My illness has taught me: Not just my illness but events tied to it, have taught me a lot of compassion. Never judge someone, you never know what they are going though.
 
22. It bothers me when people say: When doctors, or healthy people discount what I’m saying. The doctor who doesn’t care if that medicine is making you worse, “it should help”, or you seem fine. “Is it really necessary to test you blood sugar that much ?”  Yes, I go very low with no symptoms. If I don’t test to find out it could get really bad. 
 
23. But I love it when people: Are supportive, and allow me to take my mind off it. Or show genuine concern and sincerity but don’t quiz me on it. 

24. My favorite motto, scripture, quote that gets me through tough times is: This too shall pass. 
 
26. When someone is diagnosed I’d like to tell them: Mine is that same as Just Mildly Medicated, you will find a new normal . 
 
27. Something that has surprised me about living with an illness is: I got used to it. Not as well as some people, when I feel bad I still can’t function but its not as bad now. 
 
28. The nicest thing someone did for me when I wasn’t feeling well was: Just sit with me, I didn’t feel well enough to talk but just keep me company. Also take me on a car ride when I was sad and kind of depressed.
 
29. I’m involved with Rare Disease Day because: Well I wouldn’t have been If not asked , I wasn’t aware it existed, I only knew of world diabetes. Now that I  know I wanted to participate and spread awareness for Celiac Disease, food allergy’s, Dysautonomia and any blood sugar problem. 
 
30. The fact that you are reading this list makes me feel : Like I have helped spread awareness for the conditions listed above. And a little less of a lurker.
 
To see a little more about what your Autonomic Nervous System does and all of the things that can be impacted when it doesn’t function properly you can see the image below.
Thank you for always checking in on Just Mildly Medicated