I Just Want To Be Well For My Son-A Mother’s Story
I just want to be well for my son. A Mother’s Story
I don’t even know what healthy is!
But my son needs a strong and healthy mom.
I’m a 27 year old disabled mom with a rare syndrome called Ehlers Danlos Syndrome type 3- Hypermobility. It’s a multi-systemic disorder, meaning it effects, in severe cases like mine, almost every single body system. It’s caused by a defect(s) in connective tissue. Collagen is mainly effected, which the body contains about 85% of!
I remember the pain started around the age of 7. It was nerve pain from carpal tunnel and tarsal tunnel syndrome which was the worst! I was told I was being a baby about it and that it was just growing pains (I am quite short, only 4″11.5″.”) It was joint pain daily as well, with some muscle pain.
I also had panic attacks from all the pain, it was so overwhelming, I couldn’t sleep and got gastrointestinal migraines.
By age 15 I woke up to my knee being dislocated during my sleep (which I relocated myself). I was taken to a “specialist” and was told I just had “hypermobility syndrome” and that I would grow out of it. But it only progressed as I predicted. Leading to multiple dislocations and injuries as well as many more diagnoses, so many it became kind of comical. The pain only worsened and the ability to function got harder, even more so after the birth of my son.
All I have ever dreamed of doing was becoming a Doctor or Pharmaceutical Researcher to help all the Zebra’s and others with invisible illnesses!! So that no one else: falls through the cracks” (as my geneticist says.) Since I had to research for a year at the age of 18 to then diagnose myself with EDS 3, to have my primary say “It’s not possible because it is too rare.” At the age of 27 after the birth of my son a geneticist finally confirmed I was correct. And now being a “healthy” mom to my son.
My current diagnosises include:
Ehlers Danlos Syndrome Type 3 (hypermobility)
Dystonia– post traumatic from the accident & 6 bulging disks, 2 Herniated disks which has become degnerative disk disease
Thoracic Outlet Syndrome-A group of disorders that occur when certain blood vessels or nerves are compressed.
Dysautonomic regulation, Fibromyalgia, & Chronic nerve pain from my c section
GERD caused by stomach acid entering my lungs which causes bronchospasms that make it hard to breathe. It’s also caused by mast cells releasing irrigation substances in to my lungs which is an added effect.
ADD, PTSD (Post Traumatic Stress Disorder) Panic Attacks & Depression
POTS (postural orthostatic tachycardia syndrome) its like orthostatic intolerance (OI).
Chronic muscle, bone and nerve pain for over ten years.
Frequent sublaxations And/or dislocations of my knees, hips, shoulders, neck vertebrae, and fingers and toes, as well as wrists.
Migraines, cluster headaches, tension headaches, and a headache of which I don’t know that’s very intense from the accident. (I know it is called a pressure headache).
Gastroparesis-from which I was quite near surgery
Last year I suffered two months from an ALC tear of the right knee after only trying to move from standing position to sitting on the grass. My knee healed poorly but only after 2 months or more in a leg immobilizer last summer.
Right knee has Bursitis and keep filling with fluid (all major knee issues are in my driving knee as well which was damaged worse in the accident)
Endocrine problems in which I’m working on a diagnosis
Chronic fatigue syndrome-likely caused by disregulation of adrenaline
Blood flow and supply problems from leaky blood vessels, blood pools in the legs causing POTS or OI. It also effects blood supply to my entire body because the connective tissue is to lax from the mutations causing issues with all bodily systems.
Lower back pain
Nodular Fasciitis: a benign soft tissue lesion most commonly found in the superficial fascia. They are painful normally on my legs they start under the skin then can break through.
Ganglion cysts which are VERY painful normally on my hands or feet but can be any where.
Narcolepsy Obstructive sleep apnea!
Any of which can make it challenging to care for my son but all together create some overwhelming obstacles so I am looking for alternative ways to provide support. I am on pallative care which helps but would like to have a stable income as well and applied for SSI and SSDI. Currently I am on temporary assistance and get $100 from DSS in Child Support which helps some but for those who are chronically ill it makes it so anything extra, like a brace or a babysitter just isn’t an option.
and
Just recently my SSI and SSDI applications were denied!
I know they almost always say no but with as many conditions as I have they were saying at the building there was no way I wouldn’t get it. They completely skipped over my car accident.
I share my story in the personal video found below.
https://www.facebook.com/Alexix.rap/videos/vb.100008281171910/1736479393304750/?type=2&theater
And have started a go fund me page here.
https://www.facebook.com/Alexix.rap/videos/vb.100008281171910/1736479393304750/?type=2&theater
And have started a go fund me page here.
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Tags: CCI, CFS, Chiari, Cranial Cervical Instability, Ehlers Danlos Syndrome, Gastroparesis, GERD, Helping Your Unusual Child, Hypermobility, Parenting with Chronic Illness, POTS
Real Life Stories | TinaMiller | 
May 26, 2016 11:46 am
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