ehlersdanlosdyndrome

Skin care for those of us aging 20 years early...thanks Ehlers. Looking for any skin care line or regimen that might help the look of aging skin. Getting stupendously saggy...sprinkled and wrinkled... Stretchy yet fetching... Enzyme peels good or bad? Retinol? Microderm? Trying to get used to this strange skin I'm in...#EhlersDanlosSyndrome #hypermobileehlers-DanlosSyndrome(hEDS) #ehlersdanlosdyndrome #skincareproducts #skincareproducts

so I am not yet diagnosed but I'm getting there (slowly). my thumb is one of my joints always subluxating ... I have braces for my knees, ankles, wrists but no idea how to keep my thumb from hyper extending ! any favorites?

#ehlersdanlosdyndrome #HypermobilitySyndrome

I’ve been getting really dizzy when I stand up, to the point of blacking out. I’ve told my cardiologist and Neurologist about it but they say it’s not POTS because my heart rate doesn’t match, I have a defibrillator and I’m already on a beta blockers. Somebody mentioned the OI so I thought I would ask here since most of us have been to a million Drs. I passed out on a tilt test in 2010 which led to a Ventricular Tachycardia event and the defibrillator But I’ve never had dizziness this bad when I stand up.

On Monday I visited a therapist that helps with daily living. It was honestly heartbreaking spending 2 hours talking about how bad my health has gotten and how much I still hide from my family about it. Some things are just embarrassing to talk about that I can no longer do like getting dressed and showered every day. It was a very wonderful discussion with the therapist and I learned a lot as well as got commended by what I have been doing and learning on my own. She is going to help me find more gadgets that will help me with daily living and it is honestly soul crushing for my independent soul to realize how much help I really do need.
I know I say this often but I truly am concerned where I will be in just 5 years.
Even more disheartening is the fact I have often wished for various gadgets to help me and now here they are and I will be using things no average 24yr old would be using. I will be using things disabled elderly use and my own grandmother doesn't even need.
Despite the sadness I am Very glad I have found this therapist that will help me on my way and understands me and how I struggle. It was equally an answer to my prayers and a moment of heartbreak. Worth it? I think so.

#Arthritis #Fibromyalgia #ehlersdanlosdyndrome #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #RareDisease #therapists #blessthem #HypothyroidismUnderactiveThyroidDisease

Some days, you've done all you can. You've taken all the treatments (prescribed/natural/preventative), exercised/moved around, gotten out of bed, showered, and it's still not enough for your body to feel good.

Here's a reminder that on those days it's OK. Sometimes your body just won't agree. It's OK and I'm proud of you for doing all you can. #CheckInWithMe #ChronicPain #RareDisease #ChronicIllness #ComplexRegionalPainSyndrome #ehlersdanlosdyndrome #TrigeminalNeuralgia #Fibromyalgia

One of my biggest sadnesses in getting ill has been the process of grief that I’ve experienced in grieving who I was and what I can do. This last year has taken me to the darkest places, places I never thought I would go to, accepting a different way of life has been a hard pill to swallow. I wrote a poem about my feelings on this. I’m not a person who likes to share my emotions, it’s really hard for me to be so raw and vulnerable, but here it is. I hope it can help someone who is feeling like I have over this past year. Feel free to share it, if you want. Enjoy 💜 #zebrastong #ChiariMalformation #ehlersdanlosayndrome #cranialcervicalinstabilty #thrombocytopenia #NewBeginnings #MightyPoets #ehlersdanlosdyndrome #zebrastrong #ChiariMalformation

A new carved road

Standing in this desolate place,
A life once known,
Ended,
Not knowing where to turn my face.
Trying desperately to walk my usual path,
The road is closed,
I cannot move ahead,
Maybe it would just be easier if I were dead?
Forced to change direction,
Not of my own free will,
How does one carve a new life?
I don’t know how to feel.
Looking out into what seems to be so dark,
An area of loneliness and fear,
I’m screaming inside,
Can anyone hear?
Staring at the ground in front of me,
Hard and dry,
How do I penetrate it when all I want to do is die?

The faces of loved ones swim around my head,
The worry on their faces,
Every time my illnesses force me to my bed.
Laying there, my body burning with pain,
The feeling of failure,
I feel so ashamed.
The anger consumes me, burning inside,
I never wanted to drink from this bitter cup,
I’m clinging to my life,
I cannot give up.
Staring back into that desolate place,
I notice a crack in the ground,
I tentatively try to dig,
Is this new hope that I’ve found?
Day by day I scrape and dig,
A new way starts to form,
My old path getting further away,
But I still feel so torn.
Torn between what was and what is to come,
My body betraying me,
I’m trying hard not to become undone.
Chipping away at this path,
The ground seems looser than before,
I start to see a glimpse of new direction,
I’m dragging myself from the floor.
My plans and hopes of old,
They are dead and gone,
It’s the acceptance of change,
I’m holding on.

Carving a new way,
It fills me with fears,
Yet, I’m starting making headway,
I’m wiping away those tears.
Not knowing what’s ahead,
But, honestly did I know that before?
A new path untrodden,
New experiences in store.
How this new carved path will take shape,
I have no idea,
A life uncertain I cannot manoeuvre and steer,
Rolling with the punches,
More than most,
My vulnerability completely exposed.
Accepting my new journey was the biggest step,
Thwart with complication,
I’m walking forward,
Taking steps with trepidation.
I’m seeing a future,
I’m seeing a way,
Moving ahead one step at a time,
Though I’m walking blindly,
I will purpose not to look behind.

Laura Martin 31/1/19