A Life-Changing Diagnosis | Teen Ink

A Life-Changing Diagnosis MAG

January 31, 2016
By meleavvelenata SILVER, Seattle, Washington
meleavvelenata SILVER, Seattle, Washington
5 articles 0 photos 10 comments

Favorite Quote:
"No one can make you feel inferior without your consent" ~ Eleanor Roosevelt
"Sorry, I couldn't hear you over the sound of my freedom" ~ Harmony
"Nobody can hurt me without my permission" ~ Mahatma Gandhi
"Sexy fun time shorts" ~ Emily Mae

Ever since I can remember, I’ve known that something about me wasn’t right. Unlike me, my sister never got exhausted by simple tasks and my friends never complained about how much it hurt just to move. My joints slipped in and out of place for no apparent reason, causing excruciating pain. Eating made me nauseous, and I always had a headache. If I stood for too long, I’d get dizzy and pass out. My hands and feet were always cold and stiff, and immersing them in warm water burned like fire. But every time I went to the doctor, I was told that there was nothing wrong with me.

The first diagnosis I got was patellofemoral pain syndrome – a.k.a. runner’s knee – which was ridiculous because I was in far too much pain to run. Yet, the tests and the scans came back normal, so the orthopedic surgeon decided it must be that.

When months of physical therapy and rest didn’t help, the doctor told my mom that I was seeking attention and that there was nothing wrong with me.

The next doctor, a psychiatrist, diagnosed me with anxiety and depression, and began medicating me. I had weekly individual and group sessions.

The next doctor, a neurologist, diagnosed me with Sensory Integration Dysfunction, because my nerves weren’t communicating correctly with my brain. I began occupational therapy, in addition to physical therapy, group therapy, individual therapy, and medication.

The gastroenterologist told me I was lactose intolerant, so I stopped eating dairy products. When that didn’t help, I went off gluten too. Then soy, then eggs, then nuts. Soon, I was down to just fruits and vegetables.

The immunologist told me my white blood cell count was a bit low and prescribed vitamin C supplements.

The sleep clinic said I had insomnia and gave me sleeping pills.

The new psychiatrist diagnosed me with Attention Deficit Disorder and prescribed Adderall and Strattera.

The cardiologist said the ADD medications were causing tachycardia and told me to wear a heart monitor.

By this point, I was sick and tired of doctors. None of them helped, and I felt like I was doomed to live in pain. As a last resort, I went to one last doctor, another rheumatologist. I went through the whole routine, telling this doctor all my crazy symptoms, showing her my bendy joints, and having her feel my icy hands. When I was done, I sat back, waiting to be told that I was crazy and that there was nothing wrong.

Instead, she asked to see my arm. She pulled on my skin and then asked if I could touch my thumb to my wrist. I showed her that I could, and she smiled.

That’s when my life changed forever. The doctor leaned forward and said the words I’d been dreaming of hearing for years: “I know what’s going on.”

Turns out, I have a rare genetic disorder called Ehlers-Danlos Syndrome. My body doesn’t have enough collagen, which is a protein that acts like glue to hold the body together. Over 80 percent of the body contains collagen, so a lack of it can cause wide-ranging and seemingly unconnected symptoms.

However, being correctly diagnosed doesn’t mean I’m cured. There is no cure for Ehlers-Danlos Syndrome, so all I can do is learn to live with it. I wear braces on my ankles, knees, wrists, back, neck, and fingers, and I take a lot of medicine to manage the pain. I’ll be getting surgery on my hips and shoulders soon, which won’t be a permanent solution but will help for a while. Eventually, I will need an operation on my heart, because the muscles are slowly wearing out. Once my legs are beyond repair, I’ll need a wheelchair. I can’t have children, and I’ll be in pain forever.

But I’m not crazy, and now I know the reason I have felt sick all my life, so I’m glad I got diagnosed. Even though my life as I knew it is over, I know now what I’m dealing with and what to expect. Plus, I’m super flexible, and I’m getting pretty good at yoga. I’ve even learned to walk up and down stairs with crutches, which is a real accomplishment.

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This article has 1 comment.

on May. 2 2016 at 7:45 pm
socialkaysualty PLATINUM, Dover, Delaware
25 articles 0 photos 37 comments

Favorite Quote:
Let us go then, you and I,
When the evening is spread out against the sky
Like a patient etherized upon a table;
Let us go, through certain half-deserted streets,
The muttering retreats
Of restless nights in one-night cheap hotels
And sawdust restaurants with oyster-shells:
Streets that follow like a tedious argument
Of insidious intent
To lead you to an overwhelming question ...
Oh, do not ask, “What is it?”
Let us go and make our visit.

In the room the women come and go
Talking of Michelangelo.

The yellow fog that rubs its back upon the window-panes,
The yellow smoke that rubs its muzzle on the window-panes,
Licked its tongue into the corners of the evening,
Lingered upon the pools that stand in drains,
Let fall upon its back the soot that falls from chimneys,
Slipped by the terrace, made a sudden leap,
And seeing that it was a soft October night,
Curled once about the house, and fell asleep.

And indeed there will be time
For the yellow smoke that slides along the street,
Rubbing its back upon the window-panes;
There will be time, there will be time
To prepare a face to meet the faces that you meet;
There will be time to murder and create,
And time for all the works and days of hands
That lift and drop a question on your plate;
Time for you and time for me,
And time yet for a hundred indecisions,
And for a hundred visions and revisions,
Before the taking of a toast and tea.

In the room the women come and go
Talking of Michelangelo.

And indeed there will be time
To wonder, “Do I dare?” and, “Do I dare?”
Time to turn back and descend the stair,
With a bald spot in the middle of my hair —
(They will say: “How his hair is growing thin!”)
My morning coat, my collar mounting firmly to the chin,
My necktie rich and modest, but asserted by a simple pin —
(They will say: “But how his arms and legs are thin!”)
Do I dare
Disturb the universe?
In a minute there is time
For decisions and revisions which a minute will reverse.

For I have known them all already, known them all:
Have known the evenings, mornings, afternoons,
I have measured out my life with coffee spoons;
I know the voices dying with a dying fall
Beneath the music from a farther room.

So how should I presume?

And I have known the eyes already, known them all—
The eyes that fix you in a formulated phrase,
And when I am formulated, sprawling on a pin,
When I am pinned and wriggling on the wall,
Then how should I begin
To spit out all the butt-ends of my days and ways?

And how should I presume?

And I have known the arms already, known them all—
Arms that are braceleted and white and bare
(But in the lamplight, downed with light brown hair!)
Is it perfume from a dress
That makes me so digress?
Arms that lie along a table, or wrap about a shawl.

And should I then presume?

And how should I begin?

Shall I say, I have gone at dusk through narrow streets
And watched the smoke that rises from the pipes
Of lonely men in shirt-sleeves, leaning out of windows? ...

I should have been a pair of ragged claws
Scuttling across the floors of silent seas.

And the afternoon, the evening, sleeps so peacefully!
Smoothed by long fingers,
Asleep ... tired ... or it malingers,
Stretched on the floor, here beside you and me.
Should I, after tea and cakes and ices,
Have the strength to force the moment to its crisis?
But though I have wept and fasted, wept and prayed,
Though I have seen my head (grown slightly bald) brought in upon a platter,
I am no prophet — and here’s no great matter;
I have seen the moment of my greatness flicker,
And I have seen the eternal Footman hold my coat, and snicker,
And in short, I was afraid.

And would it have been worth it, after all,
After the cups, the marmalade, the tea,
Among the porcelain, among some talk of you and me,
Would it have been worth while,
To have bitten off the matter with a smile,
To have squeezed the universe into a ball
To roll it towards some overwhelming question,
To say: “I am Lazarus, come from the dead,
Come back to tell you all, I shall tell you all”—
If one, settling a pillow by her head

Should say: “That is not what I meant at all;

That is not it, at all.”

And would it have been worth it, after all,
Would it have been worth while,
After the sunsets and the dooryards and the sprinkled streets,
After the novels, after the teacups, after the skirts that trail along the floor—
And this, and so much more?—
It is impossible to say just what I mean!
But as if a magic lantern threw the nerves in patterns on a screen:
Would it have been worth while
If one, settling a pillow or throwing off a shawl,
And turning toward the window, should say:

“That is not it at all,

That is not what I meant, at all.”

No! I am not Prince Hamlet, nor was meant to be;
Am an attendant lord, one that will do
To swell a progress, start a scene or two,
Advise the prince; no doubt, an easy tool,
Deferential, glad to be of use,
Politic, cautious, and meticulous;
Full of high sentence, but a bit obtuse;
At times, indeed, almost ridiculous—
Almost, at times, the Fool.

I grow old ... I grow old ...
I shall wear the bottoms of my trousers rolled.

Shall I part my hair behind? Do I dare to eat a peach?
I shall wear white flannel trousers, and walk upon the beach.
I have heard the mermaids singing, each to each.

I do not think that they will sing to me.

I have seen them riding seaward on the waves
Combing the white hair of the waves blown back
When the wind blows the water white and black.
We have lingered in the chambers of the sea
By sea-girls wreathed with seaweed red and brown
Till human voices wake us, and we drown.

Stay strong beautiful. You will get through this. "It wont be long, you know it's gonna get better." -5 Seconds of Summer