I Just Want To Be Well For My Son-A Mother’s Story

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I just want to be well for my son. A Mother’s Story

I just want to be well for my son.

 

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)

Cervical Cranial Instability

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.

ADDPTSD (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!

Chiari 0

I just want to be well for my son. One mom's story.

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.

My most recent cervical MRI  revealed: 1 fully herniated disk and 3 bulging ones (cervical) in which a small nerve fiber test revealed they are all pinching my nerves.  The thoracic was okay with some disks looking borderline like they will start bulging soon.  They also saw odd bony growths.  My lumbar; 1 is fully herniated and 2 bulging small fiber nerve test shows they are pinched too.  It is now degenerative disk disease.  In October I had only 3 mild bulging disks.  Nerve test showed major small nerve fiber damage.  They repeated the test a few times because the readings were so high.  The EMG showed neuritis and bilateral carpal and tarsal tunnel syndrome as well as major nerve damage to my cervical neck extending to bilaterally to the deltoid.
They said I need surgery but I have to find a way to New York City for proper care.  No surgeons in Buffalo are qualified to do the brain and spinal surgeries I need.  We were going to try prolotherapy but after all the tests came back he decided the damage was too extensive.  So for now I fight each day for the strength and perseverance to push through my struggles and be the best mom I can to my wonderful son until help can be had or answers found.

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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