December 28, 2021
Thank you for taking time to read this. Unfortunately, our social media was hacked. They have now been deactivated and deleted.
As for my health, I’m still loosing weight, and my ribs still move so much that they trigger a cough or a spasm as if someone were going to punch my stomach. My ankles and wrists have been subluxing daily, keeping me up from pain often. However, my hope is still good, as we strive to grow closer and closer to Jesus. Thank you again for your support<3
November 2, 2021
I wanted to update you on my health journey. My symptoms have drastically improved but I still have a ways to go since my thumbs have gotten worse than ever, and I have many other joints that sublux regularly.
But being able to eat normal well-balanced meals has made such a difference for my recovery. My neurological symptoms have drastically improved, and I’ve been able to loose a lot weight that was put on over the last 2 years as my health was quickly declining.
It turns out that trying to fund raise for yourself takes more work than my mind and body could handle.
I had become so focused on affording the treatments that I started to forget where my hope came from. In all the searching and finding, I started to lose faith in God. But because of what Jesus did for my sins, I am able to live another day to restore my faith.
Now that I am able to eat healthier and move about more, I’ve turned my energy to my son as he is a sponge for learning. I admire the hard working parents that have pressed through some of the most difficult times I’ve ever seen parents push through. It’s motivated me to keep fighting to be the mom that my son needs.
Thank you all for every supporting word, every nudge of encouragement, every donation, and all the time you shared with me through my health journey. ❤️
August 3, 2021
This is me being treated with my own bone marrow for Stem Cell H3 Prolotherapy. Dr Ross Hauser asks about Help Hope Live, and answers my question to “why don’t all EDSers know about his specific treatment?”
August 3, 2021
On 7/19/21 Dr Hauser drilled into my bone to extract bone marrow- to insert stem cells into my hypermobile joint tissues.
July 13, 2021
We’re hoping the treatment will prevent the need for a feeding tube, which is common with Ehlers Danlos Syndrome. There are so many complications with a feeding tube either via the nose into the stomach, or through a direct hole into the stomach. My stomach bloats so bad, and is painful every time I drink water, eat, stand up, sit down, go up the stairs, or talk for longer than a few minutes. If this symptom is due to spinal instability affecting my Vagus nerves, then it should get better with treatments…Thank you so much for your donations❤️
July 3, 2021
We Hosted a 50-50 raffle Donation fundraiser for my Ehlers-Danlos syndrome related expenses. It turned out amazing! We received $590 of ticket donations, so the winner received $295 cash!
June 16, 2021
My baby has to live with my in-laws because my Ehlers Danlos Syndrome Hypermobility has gotten too severe...
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Most times I could only see him briefly while someone is there to help. I miss him so much.
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I developed a new strangling sensation around my throat. Most of the day, it feels like I have a tight shirt around my neck. And as I move throughout the day, my right clavicle produces a headache.
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It's a mental struggle...
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In this clip, I am visiting my baby before he goes to bed. (He lives downstairs with my amazing In-laws.) I want to be the one to put him to bed, to smell his baby breath as he breaths calmly to sleep, and cuddle him when he wakes up in the morning. But I can't right now...
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We decided that I have to focus only on treating my ribs, shoulders, clavicle, neck & TMJ; because I need treatment sooner than later. But we don't have $11k for a full treatment.
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I do have an electric Wheelchair and lower body Brace though. So that will help me get around until I can get my lower body treated.
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My next treatment is scheduled for next month.
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Thank you so much for taking some of your precious time, to read about my battle against Ehlers Danlos Syndrome.
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For more about my battle with Hypermobility Ehlers Danlos Syndrome, please subscribe.
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This is our Facebook page:
www.facebook.com
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This is an Interview about Mobility Through My Eyes as I fight this condition:
helphopelive.org
May 5, 2021
5 treatments stopped my 1st cervical vertebrae from hitting my skull. That was causing debilitating headaches. I could barely lay down without triggering those headaches.
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Towards the end of the video, you can see my jaw bone popping in and out of place. 5 treatments of comprehensive prolotherapy stopped the pain from my jaw.
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However, my partially dislocating clavicle still pulls on the soft tissue that affects my jaw.
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Same thing happens when my shoulders sublux, (partially dislocating).
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I'll need 8 or more treatments in each joint that is affected by Ehlers Danlos Syndrome.
Thank you for reading and watching this, and for your help❤️
April 26, 2021
Holding my head up - Most of my pictures are of me leaning my head on someone, reclining, or laying down. We've even had to keep a bed in the living for me. My husband calls it "function over form. You can see some examples in my album titled: "Painful to hold up my neck."
April 21, 2021
Greetings! Thank you for stopping by. In this video, my amazing husband shares how my EDS affects him, and asks me what my outlook is for my condition.
April 19, 2021
Constantly dislocating is excruciatingly painful. For the last week, my ribs, and left shoulder have been popping in and out of joint everytime I reach for something, or sit down. So I try to walk around as much as I can, but it causes my hips, knees and ankles to sublux. If I could hover in the air, I feel like it would help bring some relief.
Perhaps going into space for a mini vaca would help?...
The video to this update, was me 3 years ago showing my work space with EDS. Today, my condition is a lot worse.
I miss my son. I want to hold him so bad. But it's so painful...
April 12, 2021
SLIPPING RIBS
Have you ever had a rib partially dislocate?
That's one of the worse symptoms of EDS.
Today my top rib popped back in place after 5 days of being out of place. It felt wonderful!
But around 6pm, my son ran to answer the door bell, and reaching out for him, my rib slipped back out again.
I'm in so much pain again.
I don't show it on my face, because what's the point?
I just have to focus on the fact that it will eventually pop back in. Hopefully sooner than later.
This is why I need so many treatments. I have so many joints that dislocate all day everyday. It stops me right in my tracks.
When my rib popped back in, it was a pretty loud pop. My husband heard it, sitting a few feet away. When my bones pop back in, that sound is music to my ears.
But when the sound is from them popping out, it's an emergency siren, for pain to start.
March 30, 2021
Before Prolotherapy, I had to treat Eagle's Syndrome. To make sure it wasn't the cause of my painful symptoms.
March 27, 2021
This the 1st time I see my baby boy after 2.5 months out of state for treatment.
