The Connective Issue

09/25/2025

I have no affiliation or experience with this company, but wanted to share because this is amazing!

09/17/2025

I am hoping to make more videos, but it's just been a busy few months. People ask me all the time how I've been, so here's some history and updates:

I have two teenagers that I have always homeschooled. Doing this as a disabled mom has been hard, but rewarding in more ways than I can count, and I wouldn't change it for the world. It has looked different each year, as we move through phases of life, and my health.
Since my kids were born, and during my declining health, I have been a heavy gardener/canner/cook, a co-op teacher, a field trip/event planner, a (different) busy social media page admin, a traveling face painter, a student, a medical worker, an HOA president, an artist for hire, my self-employed husband's accountant, a homeschool advisor, a homemaker, a serious medical patient, and probably some other stuff I'm forgetting.

I'm a doer. I don't like to sit still.
An anxious perfectionist with OCD tendencies and control issues.

My body has forced me to slow down significantly in the past few years. Especially in the last few months.
Idle hands give the devil too much time in my mind. I've been in therapy for almost two years now.
It's been a journey, but I've learned a lot about the WHY of what makes me anxious and feel the need to DO.

I've deepened my relationship with the Lord, and am leaning on Him more than ever. I'm working hard to remember that "we are human beings, not human doers." It's ok to sit still, take care of me, and not "produce".

As a type A personality, it's a VERY hard thing to let go of the need to "go and do". I'm still working on it, and some days failing. It has been the hardest mental challenge of my life to let go of the person I used to be, the dreams I had for myself, and the future I planned. And knowing that it affects my family as well...

Being disabled by this "syndrome" is physically painful and exhausting beyond explanation, financially stressful, and spiritually challenging.
But for me, the hardest part will always be the mental side of it.

So, what have I been up to?
Doing internal work.
Talking to God.
Learning to truly REST my body when it needs it (and that's a lot).
Always dealing with new/changing symptoms, and learning how to manage them.
Being intentional with my marriage.
And always, medical visits.

I now go to a specialist PT in Mt. Pleasant every other week, who only treats EDS patients. Focusing mostly on my neck, but on some other stuff too.

Next week, I start back at my local PT office as well, addressing whatever hurts that day.

My POTS episodes and seizures have lessened as I've learned how to control them, thankfully!

I have a new patient appointment Oct 1st with the first doctor hired at MUSC as part of opening a treatment clinic for EDS. She specializes in MCAS, which has truly reared its head and is giving me a fit.
It takes a long time to narrow down food allergies/sensitivities, but I am now reactive to gluten, dairy, tomatoes, and spicy things.
This can look like severe sneezing, itchy/watery eyes, coughing, swelling, rashes/hives, tachycardia, wheezing/shortness of breath, headaches, joint pain, anxiousness, insomnia, tremors, etc...
I have a feeling the doctor will put me on the low histamine diet, which is incredibly restrictive and intimidating, but thankfully, not permanent.

I finally got my rigid neck brace, but it's terribly uncomfortable and I'm hoping the issues it causes are temporary while my body adjusts. I have a soft collar as well, both to be used at my own discretion.

The kids are busy as usual, and I'm super thankful for my village of help, especially taxiing them around.

My daughter was recently diagnosed with hEDS as well, and has developed POTS. I can't even explain the amount of motherly worry and guilt that goes along with this, even though it wasn't surprising to me.

✝️🙏🏻✝️
I am thankful for all of you who follow along, ask about me, pray for me, and take the time to read my books lol.

I'm thankful for the medical care that I'm able to receive.

I'm thankful for the vacation coming up that my amazing parents have blessed us with.

I'm thankful for my husband--always supportive, loving, and empathetic.

I'm thankful for the relationship that I have with my teens. It's had its ups and downs, but has blossomed into the sweetest thing I could imagine with them both. Proud is an understatement.
I'm thankful that they both have a relationship with Jesus, and some great mentors in their lives.

And I'm thankful that I'm not too prideful to look crazy with all my "aids", and still go do errands with the kids🤣 I'm also thankful that they're not embarrassed to be with me, and just try to take care of me and make my life easier. God bless their sweet hearts 🥰

09/03/2025

Unfortunately

09/02/2025

I had EDS symptoms first, then MCAS symptoms. It took years to figure these out and get diagnosed. Then POTS came on (could have been triggered by Covid and/or menopause, or just a "disease progression" of EDS).

09/01/2025

Some days are so hard.
Why do I have to suffer so much, for so long?
This disease is neverending, and causes so many problems, I'm sure others must think I'm a hypochondriac, because NO one has THAT much wrong.
I don't want to be a burden.
I want my life back.
I want my hobbies back.
I want my relationships back.
I want to be better for my family.
I don't want my kids to end up like me.

It's so easy to fall into despair, when it feels like everything is being taken from you.
And when it feels like there is no hope for a better future.

I see you, fellow EDSers & chronic pain sufferers.

And I have my days.
But don't stay there. God sees us. He hears us. And He does promise a better future.
THAT is what gives me hope and strength to keep going.
I AM still blessed.
And I thank Him for it✝️

08/30/2025

08/17/2025

Just ONE of the many expensive, painful issues that EDS causes:
I've dealt with this problem since I was born. As a baby, I used to "Exorcist vomit" regularly and the doctor told my parents that my esophageal sphincter didn't work properly. As a kid/teen/adult I had heartburn so bad that acid would come up into my mouth, burning my throat (sometimes still do). I finally went to a gastroenterologist at age 26 and was put on Nexium. I've been on it ever since (almost 20 years). I have a hiatal hernia and Schatzki's ring, that I have to get stretched every few years, when my food starts getting stuck (recurring acid to the esophagus causes scar tissue to form). The erosion to my esophagus puts me at higher risk of esophageal cancer. Long term use of these meds is bad for my bones, but I have tried every other alternative I've read about, and nothing works. Acid to the esophagus is bad long term, but so are the meds...Feels like a no-win situation.
Dietary changes have helped a little, but
when it's a mechanical issue, AND a mast cell reaction issue...what is there to do?
I'm working on stabilizing the mast cells (way harder than you'd think), but I can't fix the mechanical sphincter issue. 🤷🏻‍♀️
I am thankful that Nexium still helps, and hopeful that something better/safer will come along in the future.

08/16/2025

08/15/2025

08/10/2025

Adventures in EDS: Sleep Study Shenanigans

Had a sleep study done last night. I was worried about all the ways I wouldn't be able to sleep, because it regularly takes me 12 position changes, 5 pillows, 4 ice packs, 3 blankets, 2 different sleep meds, a strong fan, a partridge in a pear tree and an act of God to go to sleep. Here's one I didn't see coming though--
The belt that went around my waist that monitored breathing, was really tight. I asked for it to be looser, she obliged, by probably 1/16th of an inch...stating that "it has to be snug to get the reading." Alrighty then...I'll just deal with it Ms.Ratchet🙄 Three hundred wires, lots of glue, 2 belts and a cement bed later, and I'm trying to go to sleep. Really trying. Praying that I don't waste that $374 copay.
But I start getting some gut pain, right where the belt was. It gets worse, like awful stomach cramping. Then the nausea and heartburn...more pains... then the bubble gut.
I cooked a big dinner for my family early, so I haven't eaten since 5:00pm. If I had accidentally glutenized myself, I wouldn't have even made it to the 8:00 appointment, so that can't be it.
Is this belt really affecting my g.i. system? What the heck...?!
Ok, problem solving mode activated (bc I'm a relentless over thinker and have always needed to know WHY about everything).
Nurse Ratchet had no clue about EDS when I mentioned it, so no way she'll have an answer.
I also mentioned non epileptic seizures, in case I had one while I was there. While I tried to explain what it would look like and that I have meds and I'll be ok, she promptly interrupted me to say she'd be shipping me off quicker than FedEx to the ER for anything that happens that is "beyond her scope of practice."
{Oh ok, they won't do anything for me in the ER. I've been there, done that, got a whole collection of tee-shirts...but thanks for robotically reciting the protocols. Hopefully I'll be spared the trouble tonight}
Sooo...while I'm writhing in pain on the pavement (oops, I mean bed)...
it dawns on me that it may be MCAS. I can't wear shorts, pants, panties or anything around my waist. It causes extremely itchy hives/rashes that end up lasting for months and I can only sleep if I use ice packs. It's literal HELL.
(Yep, I just told the whole internet I'm going commando under these prairie dresses, but it ain't my fault ok!?)
Soooo....if my skin reacts that badly to pressure from clothing, how is my gut reacting to being squeezed like a toothpaste tube?
I have to call Ratchet in two different times to unhook me so I could go to the bathroom. Nothing pretty happened in there.
I wanted to go more, but I already felt like the MOST annoying patient ever. I got the side eye from every person I passed because I had to use a transport chair to get all my crap from the car to the room. Did I mention how hard it is for me to sleep?
So I held it, and writhed in pain. Apologized and went with the explanation that my body is super sensitive to all kinds of things, because I'm sure if I had went down the MCAS rabbit hole, she really would have thought I was crazy. She told me I could move the belt up, so I did. But that only sat on my hiatal hernia like an elephant, and I really thought I was gonna spew. She eventually relented and took off the belt. Lots of prayers and about 30 mins later, the rumbling calmed down.
I may have slept about 2 hours, off and on, all night. Of course it ends at a nightmarish time of 5:00 a.m. Don't these sadists realize that's my prime REM sleep time?!
As I'm being disconnected and unglued like a retired robot, I ask if she even got enough sleep time info from me to generate a report. "Your results should be ready in 1-2 weeks, and your doctor will contact you."
{Umm...ok. I didn't ask for you to diagnose me, just wondering if I even slept enough to get a $374 report at all}. Guess I'll have to wait.
Needless to say, I'm exhausted. About a 40 minute drive home, and I guess I'm weirdly thankful for the spider I had to pull over and kill. Because if you know me, you know I just about had a heart attack when I realized that sucker was INSIDE the window. That woke me right up!
First thing I did when I got home was read about MCAS and pressure triggers. It most definitely CAN affect the g.i. system. Dang I feel smart lol.
Weird crap my body does: #347