Archive for April, 2015

this Dysautonomia gal is a Work in Progress

April 24th, 2015 by Carrie, the Just Mildly Medicated gal

A work in progress, this Dysautonomia gal is working hard towards the progress.

We’ll call this work in progress Eat, Exercise, Love…

Unfortunately eating mostly whole foods, exercising, and loving the heck out of me as well as everyone around me is not going to cure any of my medical issues. I’d be wary of people who claim any differently, and they’re out there. My own cardiologist is convinced cardiac rehab is just going to zap my autonomic system back online. The truth is I am just trying to work WITH my body, and it’s issues, instead of fighting my body or hating it.

After being diagnosed with Dysautonomia (dysfunction of the autonomic nervous system) which impacted pretty much my entire body I started seeing my body as separate from ME, after all it was the uncooperative enemy that began holding me back from doing what I wanted. How are you supposed to embrace the thing weighing you down? How can you treat your body well when you’re mad at it? I don’t really know how yet as we are just starting to get on a good foot in this relationship but I am hoping for positive things.

So the goals:



Eat mostly whole foods and avoid processed foods with too many chemicals to name, chill on the snacking, and keep track of what is going in my body. I have been surprised and how much and how quickly my diet changed when I was holding myself accountable for what I was eating. Working within restrictions of a Gastroparesis friendly diet and coming a bit closer to hitting those nutritional needs and losing the empty high calorie junk has eased some nausea, helped with a few pounds, and I will admit to having a bit more energy.

(Gastroparesis is a partial paralysis of the stomach which causes poor digestion, malnutrition, nausea, and vomiting. I’ll also add that I am NOT in a “flare” meaning I am not at a point where those symptoms are acute. When they are acute it will greatly impact what I am able to eat and how much.)


If you’ve been around you’ll know I am in cardiac rehab, and I love it. Yes, I am there because a cardiologist thinks with some conditioning my autonomic nervous system will just decide to function normally. I do believe you can do many things to strengthen your body to help alleviate symptoms but unless you have dysautonomia truly due to deconditiong this theory makes little sense.  Luckily I have other doctors who understand the condition better but I also decided when else could I work out in a controlled environment with nursing staff right there to monitor me… my insurance covers it so I see it as amazing personal trainer time.

As I am exercising more and gaining strength and confidence in my body I am willing to try more. I am doing things like walking on completely flat surfaces for about 10 minutes at a time, that was something that 2 months ago I didn’t trust my body to do. I had passed out too many times from my autonomic system causing my heart rate to sky-rocket and my blood pressure to plummet to trust my body at all. Those abnormal responses are still happening I am just doing better at listening to my body and either going slower, waiting it out, or giving my body the break it needs… but then I am trying again.

I even did a yoga session today! Something I have said for years that I can’t do because of the postural changes. As I am getting stronger I am finding I can do it, it’s just at my pace and not someone else’s. My pace is slow, much slower than I would like, but it is time to accept I am not racing anyone, this is about me.


As my body responds to my new ever challenging demands I am finding a better relationship. I can’t say I see my body and ME as a united front yet. We are learning to trust each other, a little dance of give and take. When I ask something new of my body, like yoga today, and it tries I am proud. When my body starts to get dizzy and over worked, like yoga today, I am trying to give it respect instead of frustration and anger. Total work in progress. 

As these changes are happening in me I am also thinking about the love outside of me. I have such an amazing supportive partner who has been a patient caregiver even when at times I know it had to be scary and frustrating. My kids more often than not chose encouragement over frustration at my limitations. For all of my crazy doctor patient dysfunction I do have a team of doctors who understand my condition and are willing to really take the time to be sure I am at the best I can be. My nurses, oh how I love the nurses involved in my care. My friends, both from way back to new ones, I am amazed at the understanding and compassion that comes from them. I am not usually an overly mushy person but I need to be sure these people really know what that means to me.



Are you a work in progress? What are you working on?

Did you miss about my starting Cardiac Rehab? <~ click it


Cardiac Rehab and Dysautonomia

April 10th, 2015 by Carrie, the Just Mildly Medicated gal

Cardiac Rehab and Dysautonomia

Exercising with Dysautonomia can be tricky. Dysautonomia literally means dysfunctional autonomic nervous system. Your autonomic system is responsible for everything your body is busy doing that you don’t have to give any thought to. You can thank your autonomic system for handling things such as digestion, temperature regulation, heart rate, and blood pressure. When your autonomic system decides to slack off, or be flat out non-compliant, exercise can be difficult.

In just standing, let alone exercise, you’re body is working overtime to try and keep your blood pressure, heart rate, and oxygen levels appropriate. When your body is flat out non-compliant you struggle with an abnormal cardiovascular response to just about everything.  This puts you in a category of people who are both considered orthostatic and exercise intolerant as well as in need of an exercise program. You know, because life isn’t hard enough.

Most specialists that work with Dysautonomia patients advise a recumbent exercise plan along with medication, hydration, and salt loading to help combat the roller coaster of symptoms. I personally feel the most balanced in my treatment plan when I am following all of the mentioned aspects, but can admit hopping on and off the exercise bandwagon and due to my inconsistency I wasn’t seeing much in the way of results.

During a recent visit with a cardiologist I was told I needed to safely up my game. I’ve used a recumbent bike at home and during good months could average anywhere from 20 to 60 minutes 3 to 5 days a week. Truth was it just wasn’t consistent, let alone that the resistance wasn’t high enough for a challenge and my body was used to that particular exercise. When the cardiologist said she thought cardiac rehab would be a good fit for me I jumped at it.

Cardiac rehab for the Dysautonomia patient is a safe way to start or enhance a work out plan safely while having your oxygen level, heart rate, and blood pressure monitored by nurses. You’ll also have access to recumbent equipment not found at most gym facilities. The truth is you may complete the entire program and have little to no improvement in your cardiovascular response to exercise but that doesn’t mean it isn’t helping.


recumbent steppers and recumbent elipticals


Moderate intensity exercise for at least 30 minutes 5 days a week is recommend for the majority of people, including those with a chronic illness. A regular exercise program helps as a preventative measure for many health issues, improves mental health, and promotes a positive self esteem. If your cardiologist agrees that cardiac rehab is a good idea for you and your insurance approves your plan you’ll be ready to get started.

My Cardiac Rehab Suggestions:

The nurse will share the doctors approved plan, if you have concerns about this plan in any way speak up. It is not recommended for most Dysautonomia patients to exercise upright. Other than a walking test done to have a strip from the ECG of my heart rate and rhythm that was under 5 minutes I have not done anything upright in the first month that I have participated in cardiac rehab. If you are guided to warm up at a treadmill please tell them you have orthostatic issues, you’ll be shown several recumbent options.



Have your music ready. Most people enjoy working out more if they have music they like. I use an app on my iPhone called Pandora and set of ear buds. They will usually have a few TVs and headphones available that you can borrow there as well.

You’ll have a goal, mine was 30 minutes of moderate cardio. If you’re not done don’t be done. This is a unique opportunity to be monitored during different types of exercise. There will usually be everything from weight machines, balance balls, and free weights, tell the nurse you’d like to be shown how to use them properly and also ask them to let you know how your body responds. I have found that I love working out with weights, be willing to try something new. Now that I am told when my heart rate is too high I and can lower the weights and add extra reps to get the same benefit in a way that works better for me.

Don’t be discouraged if you don’t meet your given goal, have to take the rest of the day off from doing much else, or it’s just harder than you had hoped. You aren’t in competition with anyone except yourself. The goal should be to become a stronger and healthier you. This happens in small ways that add up over time.


Know how many sessions you have and plan accordingly. The idea is to create a new normal, something to continue after cardiac rehab. I had 36 sessions and decided to go 2 times a week and have developed alternate workout plans to do at home so that I am working out 5 to 6 days a week.

Don’t go on a diet, but do consider changes you can make to your diet. The idea is for this work to pay off and the last thing you want to do is come home from working hard and sabotage all that effort.

this is my new baby  bicep muscle

this is my new baby
bicep muscle

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