Lets Talk About Dysautonomia

I don't feel super qualified yet to discuss this topic as I haven't been definitively diagnosed with it as of yet.  However, because these symptoms have been going on with my body now since roughly the beginning of the year and because they have also affected my life so significantly, I felt that I'd like to at least touch upon a few things here while I'm in the process of going for various tests - so lets talk about it!

So, why am I calling my symptoms "dysautonomia"?

Well, because both my family doctor and cardiologist are sharing the same medical opinion that what I'm experiencing is most likely some form of dysautonomia which is a dysfunction of the autonomic nervous system for whatever reason.

What are the symptoms of dysautonomia?

That's going to look slightly different for everyone.  For me, excessively bright lights, excessive noise, eating/drinking too much, inability to regulate body temperature (mostly getting too cold is an issue but I don't tolerate heat well at all), migraines, excessive fatigue, nausea and moving too fast all lead to my heart rate going well over 100+ bpm and making me feel like I'm having an emergent episode.  It's incredibly scary at times and trying to convince yourself that you're okay...well...relatively okay is a lot easier said than done when you're in a flare.  It's an exhausting disorder to say the least.  It can happen several times a day and makes it very difficult to go to work.  I usually wake up tachycardic which is a nuisance.

What kind of testing have I done so far?

I've had blood work, an EKG, ECG, cardiac scoring test and I'm currently wearing a 30 day heart monitor.  I go for a tilt-table test this coming Friday which Jason is going to take the day off to take me to because I need a designated driver because they are basically going to be provoking my symptoms with the test which in turn is not going to make me feel very good.  My family doctor is also going to send me for an echocardiogram just to be on the safe side.  They are basically wanting to rule out any direct heart related issues that could cause an imminent threat.  

For several months now, this has impacted my life so significantly that it's causing mental health issues.  I've had difficulty staying at work, can't really do anything outside of work because my body is just too damn exhausted just going to work.  It's awful.  All my life goals have come to a complete halt right now until we figure this out.  I've been going to therapy weekly to express how this all has been making me feel.  I just want to feel better and the thing is, I can't really control too much when a flare decides to pop up - they are mostly involuntary.  I'm not too sure how to describe what a flare like this feels like other than telling you that it feels like I need to go to the emergency room because I feel like something serious is about to happen to me...

In reality, the E.R can't do a thing for it.  It's just a wave that I have to unfortunately ride until I can have further testing done.  Things I have changed recently is: I drink between 80-120 ounces of water daily, I quit vaping as of my birthday on May 20th, I started drinking one bottle of sugar free Gatorade a day to get my electrolytes in and I switched to caffeine free diet Coke and try to opt of decaf beverage choices where I can.  I try to limit the amount of stimulants that I'm consuming as my body is not tolerating stimuli very well at the moment.  My family doctor put me on Nurtec for the migraines which my insurance so graciously gives me for free.  However, I can't be put on anything for the heart-rate issues right now until they do further testing and figure out whatever the hell this is that's going on with me because for one, it could skew any tests they try to do and two, it may not be the best course of treatment if they don't diagnose it correctly.

Vacation To-Do's at Myrtle Beach and Charleston

Jason and I are very excited in anticipation of our upcoming vacation at the end of August.  We haven't been on vacation in about three years just because of things that came up - mostly family emergencies.  With everything we have been through in the last three years with losses and my health, we are so ready for it!  We have been planning just a little bit because there is so much that we want to do!  So we wanted to share with you just what we plan to do, keeping in mind that we have been to Myrtle Beach several times already, so we are very well-versed when it comes to Myrtle.  However, this will be our first time visiting Charleston and there is so much we want to do when we go there that I have no idea how we are going to fit it all in!

Jason has been wanting to attend the Pirates Show and Dinner, so we are definitely doing that for sure.  The condo that we rented is just simply amazing with a jacuzzi right off the bedroom which has a king bed!  I'm trying to find a place local to Myrtle Beach where I can order custom made chocolate covered strawberries that I can pick up once we arrive.  I'm not talking basic-bitch chocolate covered strawberries.  I'm talking boujee chocolate covered strawberries - ones not only dipped in chocolate but covered in mini chocolate chips, Biscoff cookie, Oreo cookie, etc.  Although, I've been having a difficult time finding a place that does what I'm specifically looking for.  There was one small business I tried, but she will be out of town when I'd want them, so that fell through.  I also have plans of doing an all-out charcuterie board that features crackers, cured meats, cheeses, olives, pickles, nuts, jams, fruit, etc which will be nice to enjoy outside on the balcony of our condo.  We definitely want to hit our favorite hot-spot restaurants like Pegasus and Pizza Chef.  Jason wants to try the Hangout restaurant at Broadway at the Beach.  We will make time to navigate Broadway at the Beach - Jason and I have never experienced it in the evening/night when everything is lit up, so I think we will try that out for a change!  Boardwalk Billy's is another restaurant I want to try.  We will spend a day on the boardwalk, a day at Broadway at the Beach and then mostly hit the pool and the beach.  I do also want to go horseback riding on the beach as I think that would be so romantic and Jason has never gone horseback riding before, so it would be a nice and new experience for him.  However, I've been halted in my weight loss due to medical issues I've been having and so, I'm not sure I will be under the max weight to ride a horse by then...

Oh how I wish we had more time to explore Charleston!  It's our first time going and we are just taking a day trip there for a change of scenery.  I just don't think it's possible to see it all in one day!  Some strategic planning will definitely have to be done as well as some sacrifices more than likely...

The problem is, nothing really opens up until 9 a.m. and everything closes by 5 p.m.

Here is what we would like to do when we go to Charleston:

• Rainbow Row (Pictured in the above photo)
• Water Front Park ft. Pineapple Fountain
• Aquarium
• City Market
• Naval and Maritime Museum (Just visit from the outside and snap some pictures)
• Boone Hall Plantation
• Eat at Red's Ice House
• Haunted Jail Tour

I also wanted to visit the Angel Oak Tree but honestly, it's going to be a tight enough schedule trying to fit the above in as is and Angel Oak is about thirty minutes in the opposite direction which is out of our way.  As far as the Naval and Maritime Museum goes, due to a tight itinerary and also my medical issues, it's best to just enjoy the battle ships from afar and snap some pictures from the outside.  For the most part, the order I put the things we'd like to do in, is the order we are pretty much going to try to do them in for the sake of time and planning.  Rainbow Row doesn't have a time as it's just a bunch of residences but preferably would like to see them during the day, so early morning would be best for that.  Water Front Park opens at 7:30 a.m., so that can get done next.  Aquarium opens at 9 a.m. then best to do city market while we are in the area.  Then we shall cross the bridge and pop in to visit the battle ships real quick then head to Boone Hall as they recommend 3-4 hours to sufficiently tour the grounds.  I figured eat dinner around 5-5:30 p.m. and then schedule the jail tour for 7 p.m.  I believe the haunted jail tour is about forty-five minutes or so, but we also have about a two hour drive back to our condo, so the 7 p.m. slot would work best for us for that.  I'm so excited!  Charleston sounds like an adventure filled day!

I have a few outfits and other things that I have saved in my Shein shopping cart that I'd like to wear for vacation.  Jason and I haven't been on vacation in just about three years, so to say the least, we are both very excited about this vacation.  We are going to try to plan another one for next year to Tennessee.  Last time we went to Tennessee (which was our first time), we only went for three days, so we'd like to go back for longer and experience more!  We are just very anxious to have a very successful vacation with this beach trip because our luck over the past three years hasn't been good with things coming up and not being able to follow through with future vacation planning.