The Years Go By… Rare Disease

                                        The Years Go By…..

I see a doctor,

I’m in pain

You look fine

Let’s try again

They run some tests

The labs look good

You’re in perfect health

But I don’t feel as I should

Can we look some more?

Somethings not right.

It’s probably just anxiety.

And thus begins my fight.

My mind is fine

It’s my body that’s broke

You made up your mind

Before I even spoke

There’s plenty of tests

That have never been run

You ran basic labs

Assumed nothing else can be done

So off I’m sent

Specialists galore

Once again basic labs

Not much to explore

You’ve checked off the norm

But I don’t fit in a box

See mental health

You’ll heal with those talks

Mental health said see Neuro

I’ve been there before

Pushed back in the box

Then shoved out the door

No one will listen

Somethings not right

It’s slowly progressive

I’m losing this fight

You’ve had ‘extensive tests’

And which would that be?

Only basic panels

No in-depth testing for me.

There’s mito, myopathy

And dystrophy

You don’t present like the norm

What norm? Can’t you see?

Adult onset is different

It’s misunderstood

You assume we should fit

We would if we could.

The literature’s outdated

The training is slim

No time to read studies

Let’s just blame them.

The kids showing signs

The same as me

It’s all in my head?

How can that be?

There are so many tests

Yet to be done

I’ve asked many times

You think this is fun?

This is my life

It’s falling apart

You see mere moments

But not from the start.

I use to keep my house

Everything in order

Now it’s collecting dust

Feeling like a hoarder

I had meals on the table

The neighborhood mom

Now I struggle to stay upright

I’m losing my calm

I don’t build endurance

My muscles fatigue quick

Weakness is present

My body feels sick

My kidneys leak protein

My gut won’t absorb fats

Tachycardia is present

Low blood pressure my stats.

My stomach shows bleeding

Esophagus gets stuck

Small bowels with rare findings

Now sort through this muck!

I want answers for my health

I should have that right

This is the life that I live

This should not be a fight

Appointments take months

Just to be seen

Some specialist’s years out

The wait in between

The process is slow

It does no good

Healthcare’s messed up

It’s not as it should

Where are the centers?

For a comprehensive exam

With doctors of all specialties

Rare disorders their plan

Don’t judge a book by its cover

They say

Yet you’re doing just that

And I’m left to pay

I’m angry, I’m hurting

My life up in smoke

Disabled and broken

Pulled down by this yoke

I feel the progression

Slowly take hold

My limbs will lock up

If I’m feeling cold

Repetition paralysis

Also exists

There’s testing for that

I will insist!

Scoliosis, kyphosis,

A pelvic tilt

Can’t support my posture

My body will wilt.

Migraines, brain lesions

Double vision as well

This is my nightmare

I’m living in hell

Early onset cataracs

Bad vision at night

Super dry eyes

Surgery I might

Scaring in the lungs

Mitral valve prolapse

Shakey jelly legs

Ready to collapse

Chronic high cholesterol

Yet no weight on my frame

Plaque calcified in my arteries

That’s for the old, they claim

Bone inflammation,

Stress reactions they say

3 years in a wheelchair

For that I did pay.

One step from a fracture

Bilateral too

Explain that to me!

What should I do?

This is not normal

It all adds up

Where are the answers?

It’s filled my cup!

Hypermobile as well

Let me show you my tricks

My kid’s knee will dislocate

It’s not a simple fix

My list is long,

Some you’ve never heard

Knowledge is lacking

Training has not occurred

Myalgic encephalomyelitis

Can you pronounce that?

Dysautonomia as well

Your experience falls flat.

Epstein barr reactivated

My immune system shot

Low C3, still exploring

But Lupus it’s NOT.

Abnormal gait

My skeleton misaligned

Some bone abnormalities

Organ differences you’ll find

Occasional burst veins

Petechial spots on my skin

Inflammatory bowel disease

I just can’t win!

Numb leg for a year

Sunburn feel on my back

Stabbing toe pain

I wish that one, I lacked!

Bowel spasms that drop me

My bladder too

My esophagus joins that list

What do I do?

Fasciculations and spacisity

Muscle spasms and pain

Internal tremors for years

Yet they can’t explain?!

Hiatal hernia repair

My gallbladder out

Multiple cysts, necrotic appendix

What’s next? I shout

Let’s see, there’s the uterus, that’s gone,

rectocele times two

Interstitial cystitis,

Neurogenic too

Anemia, iron deficiency

Low sodium, low potassium

Low ALP, low CK, low BUN,

No answers, I’ve asked for them!

Low anion gap, low ferritin,

Low vitamin D

My numbers look beautiful

Nothing to see.

My labs were all normal

My CT too

Yet full of IBD

And you never knew

I told you I’m a zebra

I don’t present in the norm

No inflammation in my blood

Based on basic panels, your form.

There are other lab markers that exists

But you’re not in the know

Don’t blame my mind for your ignorance

healthcare is a shit show.

Send me to specialists

Who know rare disease

22 years I’ve been waiting

I’m really displeased

Takes 15 years on average

For those like me

To finally get answers

It’s a simple plea

Our system is broken

Too much time lost on blame

Their ignorance is speaking

When they play their basic game.

You don’t fit in their box

It must be your mind

Without truly looking

There’s nothing to find

How do you fight a system

When your crippled and done

The fatigue is daunting

Sensory overload won

Words coming out backwards

Your memory lacking

Assisted devices for everything

Once sharp now cracking

Brain fog is strong,

Simple things now hard

Held down by this body

My freedom is barred.

If not for me,

Then for my kids sake

What is going on?

This is not fake!

She’s taking advantage of the system

Hypochondria is strong!

She just wants pain meds

How badly they’re wrong.

Somatic symptom disorder

You’re thinking on it too much

It affects me nearly every moment

I’m pained by simple touch!

She’s simply an anxious mind

But it’s only here I get spun

All the gaslighting, accusations

PTSD is no fun!

I’ve been accused me of much

Your judgements off base

I’d love to see your response

If you suffered what I face!

But wait! There’s more! Should I go on?

Nystagmus, ataxia,

vertigo too

Thank God that’s less frequent.

Oh, emphysema! But that’s on you!

Endometriosis, Menorrhagia,

Bilateral labral tears

Gastritis, Bile duct dilation,

Severe abdominal pain in flares

Constant pain in my hips

Endless in my butt and thighs

Hurts to stand, to walk, or sit

What causes this pain to arise?

It’s too rare to exist,

The doctor does boast!

No, it’s not as rare as you think,

Just simply rarely diagnosed

                                                                                Dianne MacKay 4/2/22

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s