Helping You Understand...

How can I help you understand?

There’s really no words to sum it up

No easy or quick example to give

Or way to help you empathize

It’s more than just a few symptoms

So much more than just one diagnosis

I would never wish my struggles on anyone

But I’m going to try and help you understand

I’m just telling you right now

It won’t come close to being enough

And unless you’ve walked in my shoes

There’s just no way for you to know

And I would NEVER want you to know

Or experience the daily battles

The constant unknowns

The neverending and changing symptoms

But here we go….

My AVERAGE week consists of 2 good days

The other 5 days consist of a variety of symptoms

Pain like you can’t even imagine

Throughout my body, joints, and skin

This pain triggers chronic fatigue

So debilitating that I could be in bed for days

It’s the only way my body can relieve itself from the pain.

Inflammation in every joint and throughout my body

Especially my hands, knees, feet and face.

Rashes that range from burning, itching, hot and unbearably painful

On my face, neck, chest, shoulders, back and arms

Fevers, usually low grade, that come and go as they please

Blood sugars that randomly rise and fall no matter what I eat

And no matter what I do

Daily stomach pains and cramps

Diarrhea with labor-like belly pains for at least two days

Leaving me stranded at home for days

Hip pain whenever the weather is cold or rainy

Sometimes so severe I use a cane to walk

Back pain that comes and goes

Especially after having a “good” day

I have multiple deformed vertebrae from fractures that healed wrong

Fractures I had no idea I even had.

“Silent compression fractures”

I have early signs of osteoporosis of my right hip

Osteopenia of my spine.

I have Systemic Lupus

My symptoms are constantly changing

It depends on what my immune system decides to attack next

Lately it’s my skin, joints and muscles

I've been a Type 1 Diabetic since age 12

After having seizures and blackouts from extreme low blood sugars

And being unable to control my blood sugar

I decided to try the newest technologies

I am on an insulin pump that needs changing every 3-4 days

I am on a CGM (continuous glucose monitoring system)

Which needs changing every 10 days

Supplies are SO OUTRAGEOUSLY EXPENSIVE

It leaves me feeling like even more of a burden than ever before

Even though these new technologies have more than likely saved my life more times than I'll ever know.

I’m on a daily dose of Thyroid Hormone replacements

Due to having had my thyroid gland, parathyroids and surrounding lymph nodes removed

All from a rare progressive/aggressive form of Thyroid Cancer when I was 15.

I have Gastroparesis and IBS

Making it tough to eat ANYTHING without ending up vomiting, cramping and/or having diarrhea

I have macular aneurysms and cysts in both eyes

I see a Retina Specialist every 6 months to monitor them

And my newest diagnosis is Dupuytren’s Contracture/Disorder

Causing hard nodules and cords of excess cartilage to form on the palm of my hands

For me, it’s progressed extremely quick on the palm of my right hand

Causing painful tightening, spasms and cramps throughout my fingers

And of course I already have signs of it on my left palm as well

As this disease progresses it will eventually make it impossible to straighten certain fingers

Leaving those fingers bent and tightened in a painful, fist-like position

It will make it next to impossible for me to perform simple, everyday tasks

Like grasping a toothbrush, opening bottles, holding hairbrushes, pencils, etc.

I’m a self-taught acrylic painter and feel robbed that at some point in the future

I will inevitably lose the ability to hold on to my beloved paintbrushes

And my passion of creating art will no longer be enjoyable

SO....that’s my list of struggles

I will NEVER hold a career, or know what it’s like to have one

I will NEVER be able to be independent

I will NEVER be able to help my husband provide for our family financially

I will NEVER be without pain

I will NEVER go to bed knowing that tomorrow will be productive or pain free

I will ALWAYS feel like a burden, no matter what anyone says

I will ALWAYS feel older than my age

I will ALWAYS be restricted and unreliable because of my health

But even after all of that I will CONTINUE to fight

I will CONTINUE to hold onto hope

And I will CONTINUE to be grateful for ALL the SUPPORT and LOVE I have

I will have days when it becomes too much

I will have days when I feel sorry for myself and my AMAZING family

But I will also get back up, smile and have better days, and because of my family and friend's I REFUSE to give up.

#type1diabetes #lupus #dupuytrens #osteopenia #thyroidcancer #osteoporosis #macularcysts #gastroparesis #ibs #compressionfractures #invisibledisease #rarediseases #cgm #insulinpump