Many children beg their parents for a pony, but Caitlin actually made that dream a reality. She wasn’t allowed to have a pony until proving she could afford one and look after it by herself, so as a teenager she bought one in secret, finally informing her parents 10 months later when the proof of her readiness was irrefutable. Now she is applying that same tenacity towards understanding her own mysterious chronic illness. Although a few pieces of her health puzzle have fallen into place, huge questions and frustrating obstacles remain.
In this episode of the Major Pain podcast, Caitlin talks us through her complex health situation. She is currently diagnosed with POTS (postural orthostatic tachycardia syndrome), gastroparesis, and is dealing with chronic pain from a spondylolisthesis. This is a condition in which a vertebrae in the low back slips out of place, which Caitlin discovered after falling off a horse in 2010. She has hypermobility, but isn’t sure if it is caused by HEDS (hypermobile ehlers-danlos syndrome) or hypermobile spectrum disease. At one point she was diagnosed with ankylosing spondylitis, but remains unsure if this diagnosis is accurate. She also has mysterious neurological symptoms currently diagnosed as FND (functional neurological disorder) but members of her care team disagree on this diagnosis. To make matters worse Caitlin is experiencing horrific gaslighting from medical professionals, including being tricked into taking medication in an attempt to prove she was lying about symptoms. She shares the deep frustrations of being disrespected, devalued and disbelieved, while finding strength to continue advocating for care.
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
PATREON: https://www.patreon.com/majorpainpodcast
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
TIKTOK: https://www.tiktok.com/@majorpainpodcast
YOUTUBE: https://www.youtube.com/@MajorPainPodcast
FACEBOOK: https://www.facebook.com/majorpainpodcast
AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain
Podcast: Play in new window | Download
Subscribe: Apple Podcasts | Spotify | Amazon Music | Email | RSS | More
4 Comments
Chronicillness · December 9, 2022 at 11:33 am
She should check to see if she has a pars fracture. Seek out a pain specialist and have them looknat your mri and ask for a CT scan. This is more common in hypermobile people.
Chronicillness · December 9, 2022 at 11:48 am
You should ask your doctors about getting steroid injections for the pars fracture!
Dana · January 8, 2023 at 6:09 pm
I feel same from Doctors just there to make a buck instead of caring to investigate more. I as well over years have gotten worse and developed more and more symptoms. . I didn’t eat much as kid and was very athletic growing up. It started with losing the ability to eat any food at all. After losing lot of weight and chest pain it was found to have Gall bladder removal due to gall stones. Six years later was diagnosied with dysphagia. No explanation of how or why. Will not expand my esophagus due to scaring. Another six years later I now found I have Grade 3 Spondylothesis of the L5 S1 and a herniated disk in my neck. All spind doctors wanted me to have a spinal fusion. All wanted to do it in different ways. Due to lack of consistency on how the procedure would be done, I did not get it. Also with no guarantee I can tie my shoes again. So I get and epidural and deal with the pain. Two years later I have ulcers in my esophagus and take PPI’s and it reolves, but now diagnosed with GERD. Still more symptoms develop and now I am diagnosed with Gastroparesis as I can not keep anything down, especially at night. I have to eat small and slow and sometime still does not work. I regurgitate even water. I am now with major spine and GI problems. I had my Primary Care Physician diagnose me when my GI doctor refused to look into my issues as they developed. Just kept telling me to antacids for GERD. Come to find out from other Doctors PPI’s are not suppose to be taken long term. Research also shows they slow down the GI even more. Reasons why my Symptoms where getting worse on PPI’s. I got off and felt a lot better, but still have same issues, just not as bad. Still worried to this day I will eventually lose the ability to eat. All Doctors kept saying I should go back to eating normal and never have been able to.
Major Pain Podcast · January 8, 2023 at 7:53 pm
That sounds like an insanely frustrating situation. You deserve better care and more consistent messaging from your doctors. If you ever want to share your story on the podcast please let me know.