What Does Dysautonomia Impact?

My personal checklist from this graphic:

Brain:

Fatigue, brain fog, chronic migraines & fainting since I was 14, lightheadedness

Mouth:

Dry mouth, tooth decay, difficulty swallowing

Eyes:

Dryness, sensitivity to light, greyed out vision

Skin:

Dryness, reduced sweating

Heart:

Tachycardia, bradycardia, palpitations, chest pains,

Blood vessels:

Hypotension, poor perfusion

Immune Cells:

Increased allergies

Bladder: None

Stomach:

Bloating, Nausea, vomiting, pain

Intestines:

Impaired motility, constipation, pain

The graphic is correct. There IS much more. I believe my gastroparesis is caused by my Autonomic Dysfunction. I believe there is also a correlation between the fibromyalgia and the Autonomic Dysfunction as well.

Belly Laughs

I had an appointment today at the pain management clinic. My young cousin a few times removed drives me to appointments that are within 30 miles of my home. Another woman who lives in my community drives me to appointments that are in large cities farther away.

My cousin drove me today. Her name is Lanie, and she’s the same age as our daughter. She’s a sweetheart. We always find something to laugh about during our trips together. We share a similar sense of humor. It started out as a gloomy day and as we made our way to town, I shared a story that happened to me a few years back when I was hospitalized at St. Vincent’s in Little Rock in 2015.

Living in rural Arkansas, I’ve never been around a lot of Catholic people. My daughter is dating a man from a Catholic family. He doesn’t practice the religion. I’m not familiar with it.

Back to my story. I was in the hospital because of complications from gastroparesis. The doctor ordered a gastric emptying test to see how well my stomach was functioning. I had to eat radiated eggs, and a technician monitored how long it took for the eggs to pass through my digestive tract.

Since the test took a long time, I was lucky to be able to watch the green glowing eggs on a computer monitor as I reclined on a gurney. I was in an area of radiology where the nuclear medicine was stored because there was a locked glass cabinet filled with containers. It had hazard warning signs all over the place, and the lock had a keypad. We’re talking about some serious security in place for that medication.

As I was watching the glowing mass of eggs just sit there going nowhere, a woman came in wearing scrubs and stood before the glass cabinet. She didn’t move. So I watched her thinking, “What’s going on?” It was then I noticed she held a necklace in her hands. She was praying in front of that cabinet. Then she made the sign of the Cross, opened the cabinet, retrieved something, and left.

I had just eaten radiated eggs…

Some Catholic hospital worker felt it necessary to PRAY before touching whatever was in that nuclear medicine cabinet…

Those radiated eggs were still glowing in my throat…well a sliver was in my stomach too.

She just PRAYED and I ATE that stuff!

As I’m considering what strength of radiation it takes to make my insides light up glow stick green, another worker walks in and the technician monitoring my stomach and throat says, “Hey look at this! See how it’s lit up here and here? It looks like she has two stomachs!”

Hello?! I’m lying RIGHT HERE!

It FELT like I had two stomachs!

I was about to ask the technician what the results meant knowing the answer would be, “You will have to wait and discuss with your doctor” when the praying worker returned.

She paused at the cabinet again. She made the sign of the Cross, held her rosary, said her prayer, made the sign of the Cross, unlocked the cabinet, and returned the medication.

I should’ve asked her to pray for me.

As I was telling this story to Lanie, she was laughing. I started laughing too. It led us down a path of eating radiated food and turning into a Spider-Man like creature. I recently found out I have several thyroid nodules that may have to eventually be destroyed by a radioactive pill. We laughed about it possibly giving me superhuman powers. That would be awesome!

We grabbed a bite to eat. She went in and got my prescriptions at the pharmacy so I didn’t have to get out of the truck.

On the way home, I got a horrible case of the hiccups. They wouldn’t stop. We laughed about that. We had such a good time. I’m thankful for Lanie and for getting to spend the day with her. I needed a day full of laughter.

Port Surgery and Recovery

The night before surgery, I really wanted to see our daughter. That was an impossibility. She lives 80 miles from us and has a busy life. I didn’t expect her to miss work or college classes for a “simple” surgery. I told her to stay where she was and save her absences in case I had complications. So many people I know who’ve had cancer have had ports. They talked about how the surgery was “nothing.” However, I’m the person who loses consciousness during epidurals for a ruptured disk. I’m the person who fainted in a dentist’s chair because he used epinephrine. I’m the person who cannot give blood because the last time she did, she remained unconscious on and off for hours.

Nothing about my body is normal. So my surgeon labeled me High Risk for a simple port insertion. I’m usually the type of person who prefers to get a medical procedure over with as quickly as possible, but I was nervous about this one. I talked to our daughter. I made sure she knew I loved her.

Then I set my mind on packing for our trip. I took my body pillow and neck pillow. If you don’t have a body pillow, I highly recommend you get one. It’s really helped my back and hip pain at night. Also, I bought travel sized products, and I never go anywhere without my Kindle. Since I’m so sedentary, (not by choice) I’m a bookworm. Packing Tip: Even though I use pill separators, when traveling, I ALWAYS put them in a ziplock bag just in case they come open.

Since I had to be at the hospital very early and the drive was 2 hours, we decided to go down the night before and get a hotel. Gastroparesis, dysautonomia, and fibromyalgia are an evil trio in the mornings. I usually make afternoon appointments if at all possible. Surgery schedules don’t allow you that privilege. My husband worked all day that Monday and in hindsight, he should’ve taken half the day off because we were both exhausted by the time we pulled into our hotel Monday night. I’d called and made reservations. I even told them we’d be arriving late, but they gave away our King size room. Thankfully, the hotel had elevators so I didn’t have to maneuver stairs. The bed was comfortable at least, and the place was affordable. If you’re ever in Conway, Arkansas for work or play, it’s the Hampton Inn Motel 6. I took a few photos of our room:

OPERATION DAY:

I snapped a quick photo of myself right after getting back to pre-op. My husband was still out in the waiting room. I was made to go over all the list of illnesses I have and all the medications I take with the nurse.

It hit me that I’ve survived ALL of these diseases so far. I can manage today. I’ve got this.

It only took twice to get a vein for an IV. The nurse tried once and then asked the anesthesiologist to do it. I was there for a port after all. Then I had a few minutes alone.

So I prayed. A peace came over me. I wasn’t as nervous anymore.

I did have to go under general anesthesia and have a breathing tube because I’d awakened at 3:00 am nauseous (my norm) and the anesthesiologist wanted to ensure I had an airway. I also had some minor breathing issues coming out of anesthesia but nothing serious. It went well.

I do have another nasty scar to add to my collection and the port bump is a little strange for me right now from the side view.

BUT I’m okay with it. No more 45 minutes of veins blowing out and multiple sticks. I can start my weekly IVs back up. This is a positive thing. I had a compassionate surgeon and care team. I am thankful. God saw me through this time. I have faith. I am going to keep fighting all of these illnesses until I breathe my last breath.

We have our good days. We have our bad days. We have our days where bad doesn’t even begin to describe it. However, we always need to continue the fight.

Whatever motivates you to fight, whether it’s your faith, your family, yourself, your pet, reach inside on those really bad days, and remember why you’re fighting. Never give up. ❤️

Here Comes the Port

I had my port consultation with the surgeon today. He seemed very knowledgeable and made me feel at ease when he told me he had placed ports in other patients with Autonomic Dysfunction and Gastroparesis.

While I am not looking forward to having even a “simple” outpatient surgery, I am ready to get this over with ASAP. I’m scheduled for next Tuesday morning. The scheduler asked when I’d like my surgery, and I told her as soon as she could work me in. I have dreaded this next step in the “Chronic Illness Drama.”

I’ve spoken to numerous nurses. I’ve talked to a LOT of patients online who have ports. They’ve all ensured me that I’m making the right decision. “Your life will be much easier with a port.” “No more blown out veins.” “Just one stick from now on!”

It DOES sound good! I cringe when I think of something foreign inside my body again. I absolutely HATED that heart monitor I had inside of me all those years ago. It bugged me the entire 18 months. Granted, it was larger and shaped like a cigarette lighter. The port is smaller. Hopefully, the port experience will be NOTHING like the inserted heart monitor because this time, the foreign body is here to stay.

I don’t exactly have any options though. I’m 42, and my last “good” vein has developed scar tissue. I have a prescription for weekly IV saline fluids that my body needs. I landed in the ER twice back in June, and it took the nurses 45 minutes to start an IV. Multiple doctors have told me, “Get a port.”

It is time to get a port.

I don’t want to do it, but I’m going to even though I’m nervous about the small chance of infection.

Before I brought up this small risk with the surgeon today, he beat me to it. He said he’s seen patients who have Autonomic Dysfunction AND Gastroparesis contract infections from their ports because they want to keep needles IN their ports. He warned me that I could NOT do this at all. Then he graphically explained what happened when ports become infected. I thanked him for the information.

I told him I would follow his directions to the letter because my body does NOT fight infections like it should. Bronchitis literally knocks me down for a month. The flu almost kills me. I don’t need to have an infected port! It’s one of the reasons I’ve put this surgery off. Infections scare me. I’m not ashamed to admit it.

The surgeon had an example of the actual port he plans to insert in my body, so I was able to look at it. Unfortunately, he’s not going to go through the same scar I have on my chest from the heart monitor because it’s on the left side. He said it’s better for ports to be on the right side. So I’ll have another scar. Oh well. It’s not like I go around flashing my chest all the time. I do wear a bathing suit a few times a year swimming though, and I’m sometimes still self conscious about that old scar.

He said the port will be raised and noticeable too. I’m nervous about that as well. I’ve only recently lost my self consciousness about using my power wheelchair and mobility aids. I may be disabled, but I’m still a woman. I worry about my husband finding me attractive. Of course, he assures me this port will be a non-issue. I worry about the port showing through clothes. I worry about my large chest and my bras being uncomfortable with it because that WAS an issue with the evil heart monitor.  I’m just worrying. You see a theme? It will probably take some time for me to adjust to having the port.

I am going to try to focus on the positives: I can begin IV therapy again, no more blown out veins, no more bruised arms from blown out veins, one needle stick for blood draws, one needle stick for IVs.

I will try to take photos on surgery day and during recovery to share.

Armadillos, Possums, Coyotes, and New Pups 

I live where street lights don’t exist.  I know all my neighbors and while we know each other, we aren’t that close. We are private people. Most of the people on my hill have families who date back a few generations in this community like mine. Stay with me I promise I’m going somewhere with this story. I’m trying to explain how rural and isolated I am. We rarely see cops unless there is a wreck or a high speed chase happens to come into our area. I know that if someone breaks into my home, the response time is approximately 45 minutes when I dial 911.

Back in the spring, I had a case of insomnia so Phoebe the Dachshund and I were snuggling in the recliner. Suddenly, I heard a chilling yipping sound followed by several more in the front yard. Phoebe hopped off my lap barking furiously at the same time Ginger, our outside dog started barking. I opened the front door.

To my horror, four coyotes had Ginger surrounded on our front porch!  I screamed for my husband to grab the shotgun while slamming the door. I grabbed my rollator and struggled to get into the bedroom to wake him up. He met me halfway, and I explained what was happening. Of course, when I screamed, the coyotes headed for the woods. They weren’t sticking around with humans in the yard. We let Ginger in the house. My husband went outside to make sure they’d left the yard, but I couldn’t sleep the rest of the night. We were used to seeing coyotes in the field across the road. This was the first time we’d ever spotted them in our yard in over two decades.

We also have an armadillo harassing Ginger. Ginger is a senior dog. She’s half corgie and half dachshund. She’s rather harmless. The armadillo knows this. I’ve actually named this armadillo because it has become a fixture in our yard!  If you look on my Instagram, there is a photo. Dilla antagonizes poor Ginger. Dilla also digs holes ALL in the yard. I’m having trouble using my rollater and power chair now thanks to Dilla. While it HAS cut down on the tick population like the possum that has also harassed poor Ginger all summer long, Dilla has become a nuisance.

My husband and I don’t believe in killing animals unless you are going to do it humanely and eat them OR if they have to be euthanized because there is no hope OR if they are trying to kill you or your pets.  Therefore, Dilla, the possum and the cat food stealing raccoons are safe from us.

So…To combat our coyote issue in a nonlethal manner, we got two blue heeler (Australian Cattle Dog) puppies on Sunday. We had one of these dogs many years ago. He was a great guard dog. They are a smart breed and easy to train. They are known for being territorial and keeping predators away. Also, they are less aggressive than some other dog breeds. Since I am often alone while my husband works long hours, I am happy we got these pups. We have them in the house to bond with us for now because they’re so young.  Also, we are installing wireless fencing outside so they will have boundaries and stay safe on our property.

If you enjoy wildlife check out the deer family that lives at the edge of our backyard that I posted on Instagram. While my husband and I do not hunt, I am not against hunting at all. I live in The Natural State. The hunters in our state are also some of the biggest conservationists I’ve ever met. We are a conservation state. My husband and I simply prefer to watch, photograph, and enjoy their beauty.

Meet Willow and Pepper:

Take Me Away

I’ve always used books to hide from harsh realities surrounding me. I’ve laid in bed this summer and lost count of the books I’ve devoured. If there is something happening in my life that my brain cannot handle, the book count goes up. I escape.

Books are my drug.

While I’m reading a book, I’m not a chronically ill woman lying in bed aching from scalp to toes. I’m not this lady who is a housewife unable to clean or cook whose mind won’t shut up telling her she’s a failure because she can’t do those things.

When I’m reading a book, I’m somewhere far away from the doctor appointment schedule hanging on the wall.

When I’m reading a book, I’m able to escape the prison of loneliness that comes with chronic illness and being a shut-in living in a rural community unable to drive.

When I’m reading a book, I can join the world that continues to spin and move on while my life feels as if it stands still.

While I’m reading a book, I get to experience past hobbies long left behind when illness took control.

When I’m reading a book, I’m able to swim in the sea, smell the salty air, hike a mountain, run once again, ride a roller coaster and feel the adrenaline rush as the cars fly on the rails.

When I read a book, I get to live.