14 year old me. 2 days after my thyroid cancer surgery AND surprise diagnosis, taken on Christmas day 1998.

        36 year old me. 25 years              after my first diagnosis of                       type 1 diabetes.

Still Hopeful After 25 Years

Moment by moment

Symptom by symptom

This is how I measure my day

Since the young age of twelve when I was diagnosed with Type 1 diabetes 

I've learned to take things as they come

I've had to mature too fast

Miss out on normal teenage fun and education

I went from an all A student to a D or "Incomplete" student

I suddenly went from healthy

To chronically ill and told years have been cut off my life by no fault of my own.

4 days after my 14th birthday I had an over 9 hour surgery that was supposed to be a simple 2 hour surgery to remove a "benign" growth on my thyroid.

They ended up completely removing my thyroid, parathyroid and surrounding lymph nodes due to a rare, fast growing type of thyroid cancer.

I don't remember much of my 7th grade or beginning of 8th grade years.

Radiation treatments, tests and scans consumed most of them. 

Followed by depression, anxiety and panic attacks once high school started 

I NEVER experienced prom.

I wasn't able to walk with my class on graduation day

It was lonely and my memories of those times in my life are mostly depressing and sad.

Fast-forward to age 33. After YEARS of various debilitating symptoms I was diagnosed with osteoarthritis and then Lupus (SLE).

Never started treatments due to discovering I also have multiple eye diseases that are putting me at risk of losing my vision. At age 35 I started getting monthly shots of a chemo drug injected into my left eye to help preserve my vision. As of now I am getting these injections every 3 months and it will be for the rest of my life.

I was also diagnosed with something called Dupuytren's contracture that same year.

A couple weeks ago I suddenly had extreme pelvic pressure and also started passing clots and spotting between periods. I saw my gyno and scheduled a robotic assisted complete hysterectomy for December 1st. I've had a failed ablation and fibroid removal back in 2011. I tried multiple hormones and supplements over the years that NEVER worked or made things worse. My doctor said my excessive uterine bleeding will only get worse until menopause occurs and my uterus is so extremely retroverted (tilted) that it's pushing against my bladder and bowel, and it also seems like my endometrial fibroids have returned in abundance. This is all why I have chosen to have EVERYTHING removed. Lupus flares occur every single time I menstruate, I'm stuck in bed a week before my period. My quality of life has rapidly gone downhill and I'm more than ready to FINALLY get to do something about it. I'm nervous about anesthesia, and recovery. I'm worried my blood sugars will be hard to control. I'm scared of not waking up after surgery. I'm scared of the doctor finding cancer and tumors instead of benign fibroids. But I'm excited to have some energy, no more PMDD, no more flare ups every few weeks. No more stomach pains and IBS flare ups during menstruation. I'm resilient, hopeful and a survivor but more importantly I'm a mom, wife, daughter, sister, aunt, and friend who wants to have a better life and be a part of making memories with the ones I love. Wish me luck, send me good vibes, and/or pray for me. Thank you for the support! 

I was supposed to read a eulogy I wrote at my mother-in-law, Arla's, memorial service but sadly I wasn't able to attend the service due to illness. I worked really hard on this and was actually looking forward to speaking on behalf of her son's and grandkids. I'm proud of what I wrote and the past few days have felt Arla pushing me to share it so here is my sweet mother-in-law's eulogy. 

Arla Kay Rozeboom

July 17, 1947 - August 12, 2021

"For those of you that don’t know me, my name is Sarah Rozeboom, and I am married to Arla’s youngest son, Shawn. 

On behalf of Arla’s family, I want to thank you all for coming here today to pay your respects to our Mom and grandma, Arla Kay Rozeboom.

There’s so much I could say about Arla, but I wouldn’t be doing this right if I didn’t first mention her fierce, unfailing love for her three sons, Rob, Scott and Shawn, they were her world. She would move Heaven and Earth for her children. And when she became a grandma, her grandbabies became her absolute pride and joy and that fierce love only intensified. Arla’s strong love for children led her to run a full-time daycare out of her home for over 25 years. 

Arla’s faith was unlike anything I have ever known. Throughout ALL of the hardships life threw her way, her faith NEVER faltered. If anything, it grew stronger, and she showed it in everything she did. Anyone who knows Arla, knows that she had a HUGE GIVING and LOVING HEART. If someone was in need, Arla was the first to offer help and send up prayers. She often carried a little “prayer book” in her purse just in case she came across or heard of someone in need, she would write down their name and told me that every night before bed she would try to say prayers for each person by name. Now that’s what I call a compassionate faith.

During Arla’s final moments on Earth, Rob, Scott, Shawn and I were able to sit with her and say our final "I love yous" and "goodbyes". She never woke up, but I believe she heard us and felt us there. I had the honor of holding Arla’s hand in both of mine as her heart took its last beat. It was a life altering moment and one of the hardest, most chaotic nights of our lives. Although our hearts are broken and we know holidays and birthdays will NEVER feel the same without Arla and her unforgettable laugh, we find some comfort in knowing she’s no longer scared and in pain. She’s no longer in a body that was constantly failing her. Arla has been reunited with her husband, Bob; her mother; her little sister, Evonne; and so many other loved ones. But most importantly, she is now home with her Heavenly Father. 

“Those who Hope in the Lord will renew their Strength. They will soar on wings like Eagles; they will run and not grow weary. They will walk and not feel faint.” 

-Isaiah 10:31

We will love you always, and we will be missing you so very much!"   

Quotes that Speak to Me

Dupuytren's Contracture

My right hand with visible hard nodule and raised cords.  #dupuytrens #dupuytrenscontracture #dupuytrensdisease

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