Chey's Ehlers-Danlos Journey

Chey's Ehlers-Danlos Journey Follow me on my journey navigating life with Ehlers-Danlos! https://www.threads.net/
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01/13/2026

Ah... The cold weather. It wreaks havoc on my joints and causes great pain.

I really can't wait for summer.

12/25/2025

I absolutely cannot wait to start my job with Geico!

I start January 26th. I am still doing odd jobs to make cash and I have unemployment too.

My body is in a flare and the depression isn't fun. But ultimately, I need to keep moving.

12/15/2025

Man... Life has a way of kicking you in the teeth.

However, I still get up and still fight every day.

Since I wake up around 4am or 5am most nights, I get up and take my meds and lie back down, so when my alarm goes off, I am pain free (ladies and gents, MIDOL WORKS FOR EDS - In my own personal experience.

I'm really hoping Geico doesn't rescind the offer because I'm prescribed Medical Ma*****na. In Texas, they don't protect MMJ patients from employers rescinding offers LEGALLY.

I don't know what Geico drug tests for, but I have gathered proof in hopes they don't take the offer back.

I'm doing anything and everything to gain income, such as being a Notary, and Ordained Minister, I detail cars and can clean homes.

Please pray that Geico keeps me.

11/14/2025

Hello, Ladies and Gents!

I know it's been months since I have posted. A lot of things happened including:

- Rehab for my relapse
- Mental health inpatient stay and PHP
- Lost my job, so I'm looking for a new job
- hEDS has gotten worse, but I found that taking Midol twice a day helps more than any op**te or narcotic I have ever taken
- I'm over 100 days sober!

I'm still navigating life and doing as best as possible.

I also have an MRI today of my head to check for MS. It's a very real possibility since my sister has it. Since all EDS treatments have failed me, I may have MS as well.

Anywho! Thanks for sticking by me :)

This is my fundraiser right now to help me get through the end of August and to get home from Los Angeles. Consider help...
08/06/2025

This is my fundraiser right now to help me get through the end of August and to get home from Los Angeles. Consider helping, please 💜

Hello there!My name is Chey, and on June 28, 2025 I got on a plane to LAX to receive mental health help. My first night in the detox house, I wasn't given my psych meds or pain meds. Later on Wednesday afternoon, I was taken to Northridge Hospital to detox there because the doctor at the facility di...

08/06/2025

Any Star Trek Series that is not Voyager. Degrassi . NCIS. :)

08/06/2025

Hello, fellow friends and Zebras!

I know I haven't been on this page much. A lot has happened since the finalization of my divorce on May 2nd, the death of my dad on May 6th, and feeling like my extended family had abandoned me. I know some of them haven't abandoned me. But the memorial weekend made me realize that I was still a black sheep, but even more so because of wearing braces and using a cane.

It is August 5th. I landed in Los Angeles, California on the 28th to go into a dual-treatment center. I needed mental health help and to change behaviors and just get the needed therapy. I also came in to get weaned off of the Buprenorphine patch. At 10mcg/Hr, I was in unmanageable pain. Flare-ups would hit and they would knock me down. Hence seeking medical ma*****na in Texas (I have Epilepsy and it's legal for use for seizures.) September 1st, people with diagnosed chronic pain without op**te use can get a prescription. Granted, it's not cheap. $95 for a tincture of 10mg THC and 1,000 CBD or something like that. The Governor here in Texas did not ban H**p in Texas, so I can still get the THCA vapes (Bees Knees is the brand for me!)

But, I need to get this pain under control. I don't want to be hooked on opioids. Every time a flare-up hits, I'm reaching for oxycodone pills that I had from my surgery last October. I didn't take them then, but I also had a Hydrocodone prescription and Tramadol. The pain was so intense, yoga, stretching, and using heat/ice just wouldn't calm the pain. I would coat my back in lidocaine patches or use Biofreeze. I would lie in bed crying.

I am crying from pain as I write this. My patch stopped working this morning and I'm waiting for the nurses to give me an option. I sobbed in the shower this morning after getting up.

I have been stretching constantly. Doing the yoga. Hydrating. I even got a really healthy California Valley Girl smoothie. Made me feel like a hippie.

30 days to get through all of this.

07/21/2025

I have been off this page for a little while now. I have been struggling with health issues, family drama, and friend drama. I haven't had a lot of time to connect and engage on this page.

Updates: I am being sent to an endocrinologist to see why all of my hormone levels are extremely low. I was also told to see a Rheumatologist because of 3 blood tests coming back positive and abnormal for autoimmune issues. Luckily, I have a Rheum and I have an appointment in August. I just need to get LabCorp paid off.

I hate that I have another specialist to see. The Dermatologist did a full body check and said to come back next year for another check. I was cleared there :)

I also have Thrush in my mouth. The mouthwash tastes like cough syrup and it's sweet. I hate it. I can't wait to get this cleared up.

I have decided to cut contact with my extended family. They never reached out to me much, and when I tried to maintain contact I would never get a response. Since my dad had passed away, I don't have a link to them anymore. Since my sister tore into me the week of the memorial and had said I was a burden and a problem. I'm not sure if I'm going to keep in contact with either of my siblings, and since Mom disowned me, I honestly don't have a family anymore. I have friends. But even with my friends, they're tired of me constantly having negative experiences or having a negative attitude right now. If they had to walk in my shoes right now, they would be scared and would want support. It's just a ME thing. I am working on trying not to put myself first. I am trying to talk about my friend FIRST. Then, when I discuss their things, I can maybe talk to them about what's going on with me? I am trying so hard to put others first and to be selfless.

Bear with me, guys. I'm just hoping for things to fall in line according to plan.

06/25/2025

Hey ladies and gents! I know I haven't been active, but I needed to take some time to get through my dad's memorial service. That entire weekend was stressful for me. It caused a lot of physical and mental pain.

Last night, as I was taking my meds, I stood there for a solid 3 minutes. My night pills were in my hand. I looked at my pill calendar, then the pills in my hand, and I finally looked at my supplements and vitamins. I took a good, hard look in the mirror. As I was observing my facial features and reminding myself what I like about my face and hair, I began to think how this isn't the life I had imagined for myself.

I never expected to be taking a handful of pills in the morning, and a handful of pills at night, with my vitamins and supplements being dessert. I never thought I would be dependent on an op**te that doesn't help my pain anymore and is just a burden to keep putting my patch on because I know that if I stop putting the patch on, I will go through pretty bad withdrawals. I'm not personally addicted to my op**te patch (how do you abuse a patch?) But my body is DEPENDENT on it.

I had an absolute meltdown. I got angry. I took my prescription pills for that night and just said "F**k it" to the vitamins and supplements. Rvety 4 to 6 months, I have these breakdowns and realizations and I either stop ALL meds (psych meds, pain meds, all vitamins and supplements) and go absolutely insane from the withdrawals, or I stop the supplements and vitamins, and my body starts physically feeling worse.

I thought long and hard about how my life will go. Seeing many other EDS stories and seeing how young or old they are doesn't give me hope for much recovery as I age. These stories would list EVERYTHING that the person was doing to help themselves, and what doctors they see to help them. Yet, they were still suffering greatly. I now know my life will continue and will continue to suffer every day. I can't escape this genetic disease. I was born with it.

I just hope I can make it through today. Waking up on a next level of pain has me irritable and sad :(

06/16/2025

Ah.... The joys of spoiling yourself with your favorite comfort foods, knowing you're going to be in acute pain the next day and feel so sluggish.

EDS and food: THERE ARE TRIGGERS!

It varies person to person with EDS. For me, tons of sugar (lemonade, sodas, chocolate, candy) or loads of Carbs (breads, pasta, fried foods will set me off for 2 to 3 days after I consume.

I knew what I was going to do myself. I knew those Cheddar's croissants and Wisconsin Cheese Bites were going to hurt me. But they're so delectable and they make you feel comfy.

1st day with a food trigger flare: My muscles are so tight, they feel like their ripping apart. Every joint in my body has a sharp, pulsing, achy pain. I am braced up. I am in comfy clothes. My head feels foggy. My eyes are extremely dry and irritated. They're so red, it looks like I am high or have pink eye. I use my Systane drops during the day and the ointment at night, but it doesn't matter. Allergy meds do not help with this either.

I am MISERABLE. But, was it worth it for those croissants and cheese bites that I hardly get to eat? YES.

This is my life. Gambling with food and then dying the next day. It's a rollercoaster ride for sure.

Today's outfit: Mostly purple.New back brace since the old one was digging into my ubderarms and causing chaffing. My bo...
06/13/2025

Today's outfit: Mostly purple.

New back brace since the old one was digging into my ubderarms and causing chaffing. My body braid should be here by August, so I won't need all these braces!

I also got my ankle compression sock on my right foot. Last piece is my wrist compression, but only after I get some quick chores done :)

Rest when you need to and take breaks. Otherwise, your body will decide to do it at the most inconvenient time and MAKE ...
06/10/2025

Rest when you need to and take breaks. Otherwise, your body will decide to do it at the most inconvenient time and MAKE you rest.

I feel like I'm crashing. Life has been so busy ever since I left my last job. It's just been go-go-go. I sit here, on the couch, knowing I need to finish my task. Just one more task.

My body is saying "Nah, fam. It's time for bed."

It's 7 pm and my body wants to get in bed and sleep for 12 hours.

The chronic fatigue is not fun.

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Dallas, TX

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