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.

We All Know...That I'm Not Very Good At This

It's been a crazy past few month's guys.  Back in March, Jason's dad took a very nasty fall which resulted in EMS being called.  He fractured his hip around his hip replacement and had to have surgery.  Come to find out, he's been having mini strokes.  He has a referral for neuro-psychology but can't get in for another eight months or so because everyone and their brother has a neurological issue.  So, he most likely won't be seeing that doctor until around January 2026.  I haven't been too well myself lately.  I've been dealing with a lot of stress in my personal life and it's starting to show up physically now.  I've been dealing with a lot of increased heart-rate issues lately and I'm currently in the process of working with several doctors to figure out what is going on.  To say the least, these issues are making me extremely fatigued and feeling very ill most of the time.  My primary care doctor won't put me on any medication right now to stabilize the heart-rate issues until I see the Cardiologist on June 2nd because if I'm sent for any tests, being on medication will skew the test results.  So I'm just doing my best to reduce as many bad habits as I can for right now and eat as healthy as I can as well as staying well-hydrated in the mean time.

I quit vaping as of May 20th which was my birthday.  I had quit one time before and then my dad died - it's not an excuse.  I chose to pick it back up.  Yes, I was dealing with an extremely stressful event but at the end of the day, there will always be stress.  I don't do caffeine often but when I do, I'm now choosing decaf options which still has a small amount of caffeine, but is way, way less than actual caffeine choices.  I switched from cream in my coffee to oak milk and Splenda instead of sugar.  Yeah, they say Splenda isn't all that great either, but what the hell other options are there?  The only way to be truly healthy is to eat chicken and broccoli all the time and drink water - that's it!  I've had to take a step back from doing things that require me to "push" myself and ask Jason for help when I need it.  I think recent events really scared him with what I'm going through.

I've been reading a little bit here and there and would love to do so more.  It's just as of late, I've been very, very tired and I'll start reading and then my eyes will get very, very heavy and before I know it, the phone, tablet, whatever will just about fall out of my hands.  Self-help books is what I'm currently interested in right now.  It helps fill the gaps between therapy appointments.  I'm reading one right now called, "Forgiving What You Can't Forget" by Lysa Terkeurst.  A couple others that I'd like to read afterwards are "Communicate Your Feelings (without starting a fight) by Nic Saluppo and "The Let Them Theory" by Mel Robbins.  I was also thinking of reading "The Magic of Mindful Self-Awareness" by Matt Tenney but I read the sample and it just didn't do anything for me really.

Therapy has been helping me.  I was so ready to cancel therapy this past Friday because I was out of work Wednesday and Thursday, spending from then until now mostly in bed trying to recover.  I'm dealing with a lot lately mentally.  I've been super hard on myself about my career and feeling bad about how I haven't been able to progress lately among other things.  Thing is, maybe I just need to focus on my current position and managing that as it is.  Maybe it's best that I don't progress until I'm able to get my health straightened out.  Either way, one thing I'm working on is setting boundaries with people and realizing I can't come to everyone's rescue all the time.  I need to put myself first sometimes and as of late, this is definitely one of those times.  I know I've said it a lot and we all know just how terrible I am at keeping this damn blog up and running, but what I would like to do is be a lot more consistent with it...writing here that is.  I love writing and keeping track of my daily musings, but I just haven't felt like I could ever prioritize it.  Well, the times come that I prioritize what is important to me!

1/19/2025

Good morning.

I've been busy this morning, trying to get ready for the week ahead.  I'm working on my last load of laundry for the week, cooking for the week ahead, started my exercise regimen, did some dishes, took care of the animals and now just taking a minute to sit down and work out some goals for myself for this year.  Among other things, one thing I have struggled with greatly is my weight.  And this year, while I'm not taking my goals super seriously (still taking them somewhat seriously...I'll explain that in just a minute), I've decided that going forward, I'm focusing on me - my happiness and my health!  Now, when I say that I'm not taking my goals super seriously, I'm taking them seriously, but just not to the point where I set myself up for failure.  Basically, I know what I'm going to work on and I'm just going to do the best that I can.  In the past, I have set my expectations too high and when I failed, I beat myself up over it.  One thing I have come to learn as I get older is, when you fall off, what's most important is getting back on track.

Friday I went to Walmart early in the morning because I hate going to Walmart once all of the people start getting out and about.  I spent way too much money, of course.  I was able to get most of the things on my grocery shopping list while I was there, stocking up on other things that I had ran out of.  Then I went to Ingles and picked up a few things that I prefer to only get at the grocery store.  From there, I sat down at the Honda dealership for almost three hours getting two recalls serviced on my car as well as getting a bent valve stem core replaced on one of my tires.  Came home, ate lunch, took a nap, woke up and did some laundry and changed the bedding all before Jason got home from work.  We tried a restaurant downtown called Doolittle's that was recommended by some co-workers and to say the least, I wasn't that impressed, especially for the price - very expensive!

I purchased Belli Welli to try which claims to have some pretty amazing benefits such as reducing bloating, supports hair, skin and nail health, keeps you fuller longer between meals, has electrolytes for sufficient hydration and has fiber and probiotics to promote gut health, keeps you regular and maintains metabolism.  I aim to drink about a half gallon of water a day.  I'm trying to cut way back on drinking soda and hopefully can cut it out altogether soon.  After I finish the vape liquid I have left, I'm also going to be quitting vaping again - hopefully this time, for good!  I'm working on getting my nutrients solely through my food intake and in that, consuming low carb food choices that are high in protein.  I'm basically going to focus on high protein meats, some dairy, veggies and fruit.  

I started my exercise regimen today, having only did 15 minutes with the Infinity Hoop because I have to take it easy with the issues I have with my back.  I'm hoping to do 15 minutes of the Infinity Hoop three times a week for now until I feel like I'm in a comfortable place to increase.  Slow and steady wins the race.  I was been able to lose about 25 pounds last year.  I still have about 122 pounds to lose in order to get to my goal weight.  One important thing I've learned from my doctor is to not worry about what everyone else is doing and listen to my body.  He always said, "listen to your body, it will tell you what it needs".  Since taking this advice, it hasn't failed me yet.  Others will always try to give you advice based off what they think is right or wrong, but truth is, everybody's body is different.  Two people may have the same medical issues, but how your body responds to those medical issues and what you have to do for your body may be different from that of someone else.

I'm not a huge breakfast person, so I just like to either do a TwoGood yogurt w/ chia seeds and granola w/ a banana or a Premier Protein shake and snack on fruit of my choice.  Monday-Thursday (my work schedule), I eat what they serve at lunch (because it's free) and I just keep in mind to minimize the amount of carbs I consume and my portion sizes.  Dinner is whatever I make for the week on Sunday's, keeping it high protein and veggies.  I try not to eat after 6 p.m. as that's when your metabolism starts to slow down for the night.  I made Jason pasta and meatballs w/ sauce and I'm doing a healthier variation without all the carbs - buffalo meatballs w/ sour cream cucumbers.  I feel like I'm in a really good place to start truly working on myself and I love it for me! 🙌

Thing's I'd Like to Accomplish in 2025

❤ Finish our mini bathroom reno in the main bathroom

❤ Hire an electrician to fix some electrical and do a few install projects

❤ Get the backyard cleaned up

❤ Get new floors for kitchen/dining room and living room/hallway

❤ Make a D-I-Y coffee station for our dining room

❤ Get new night-stands and do some decorating in our bedroom

❤ Another mini bathroom reno for our master-bathroom

❤ Continue strengthening my relationship with God daily

❤ Work out a self-care plan for my mental and physical health

❤ Take a much needed vacation with Jay

❤ Designate time to be "unplugged"

❤ Pay off credit cards and medical bills

❤ Read more...(especially the bible)

Little by little, day by day - I know that with God, I'll find a way!

11/10/24

Good afternoon.

The week was okay.  I had my phone interview on Monday and they called me back in the same day to schedule an in-person interview.  I didn't get the QC job, but that's okay.  Being a destiny oriented individual, I believe that everything happens for a reason and in that, I don't try to force doors open that are not meant for me to open.  The position I more recently applied for was braiding/textile tech.  I have my in-person interview for the braiding/textile tech position Thursday morning.  I have tomorrow off from work as I have a doctor's appointment to follow-up from the procedures that I had for my back.  The procedure is holding up pretty well for me for the most part.  Tomorrow, my mom also has surgery, so I'll be waiting to hear from her on how that goes.  I'm praying it goes well for her.

Jay and I celebrated our 14 year anniversary this past weekend.  Our anniversary technically isn't until November 26th, but seeing as how that's Thanksgiving week, we celebrated a little early.  We also celebrated the fact that he's been with his job for a year.  We visited Sigal Music Museum in Greenville and then went out to eat.  I finally got my Nashville hot and honey Chipotle mozzarella sticks at Chilis and yes, I got the cheese pull!  Other than that, I spent the weekend doing some light household chores and did a little more painting on my figurines.  I took a decent nap today as I was a little tired.  All in all, it was a good weekend.  I've already started buying things in preparation for Thanksgiving.  Jay's dad and I are splitting Thanksgiving down the middle as far as costs and cooking goes.

Anyways, that basically sums up my week and weekend.

Here's a photo dump from the weekend.

11/3/24

Good morning.

This week went by rather quickly.

Friday I went grocery shopping fairly early.  I came home and did dishes and laundry.  I made two loafs of homemade apple cinnamon bread - one for us and one for Jay's dad.  We took Jay's dad out for lunch yesterday at China buffet.  Having that family time was nice - we ended up discussing Thanksgiving plans.  We are going to split Thanksgiving down the middle with the cost of food and also cooking.  I also stopped at PetSmart and got pee pads and Greenies dental chews for Rebel.  Rebel's been dealing with dental plague so hopefully these help with that.  I finally started painting my 3D prints on Friday.  I focused mostly on Cheshire but also managed to paint Alice's hair.  I just have some light chores to do today such as washing our couch covers, vacuuming, dishes and cooking our dinner for the week.  I'm doing a simple dinner this week - sheet pan kielbasa, sausage, roasted potatoes and carrots.  Other than that, I just have plans of mostly relaxing.  Probably going to play video games for a bit and then get back to reading the bible.

Jay and I are suppose to go to Denver Downs farm this weekend for cider fest and pumpkin nights pending it doesn't rain.  Jay wants to get a funnel cake and I want to get an order of fried pickles and a corn dog.  Jay and I are going to visit with the family animals and watch Exit 83 band play.  I haven't heard anything back about the quality job, but they did post a position for braiding/textile tech I which was my second option, so when I got home Thursday afternoon, I applied for that.  I received a phone call on Friday requesting to set up a phone interview for the position, so I have that on Monday at 10 a.m.  I have all of my notes prepped and ready to go for that.  What is meant for me will be and I know God will make sure of that.  My only concern is the pay.  I don't mind temporarily making what I already do, but I prefer not to take a pay cut if at all possible.