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

Thursday, April 2, 2020

Today is my husband’s 35th birthday. He is the hardest working, most fun-loving and patient man. So, before I start writing about anything too serious, I want to first acknowledge that 35 years ago today, my soulmate, and best friend was born and I couldn’t do this thing called “life” without him. Happy Birthday Shawn! I love you so very much!

This morning Michigan’s governor declared that all K-12, in-person classes, are officially done for the year and students won’t be returning to school until the following school year. In other words, we now officially have an 8th grader and a 5th grader, whether we’re ready for that or not. 

Our youngest, Levi, was able to video chat with his teacher and some of his classmates this afternoon and it was such a fun thing for him to be able to see everyone after 21 long days of isolation/social-distancing. Technology like this is an amazing blessing right now, and we’ve been taking advantage of it. A few days ago I was also able to video chat with my “Tribe” of girlfriends, we talked, drank wine, and laughed A LOT for over an hour, it was the BEST and most needed kind of therapy. I highly recommend using Zoom or any other app that allows you to socialize with friends and family while we continue to practice social-distancing.  

When all of this COVID-19 shit started I felt blindsided but most of all I felt robbed of my progress with Physical Therapy. After all of our future doctor and therapy appointments were cancelled I felt robbed once again of getting the answers from the Osteoporosis specialist and Orthopaedic specialist, which were two of my March appointments I had been really looking forward to. It took MONTHS of waiting for my March appointments and then BAM they were all cancelled and who knows when I’ll be able to reschedule. This type of “waiting game” is even more stressful because NOBODY knows how long it will be before we’re able to schedule any in-person appointments with specialists. I was also right in the middle of scheduling Landon’s first therapy session when all of the social-distancing started, followed by the complete cancellation of all in-person therapy appointments, so once again, I have NO IDEA what this means for Landon and whether he’ll be able to actually start therapy in the next couple of months or not. And if I’m being completely honest, he is probably the last person I would want to be completely quarantined with. Thank God my parents have been allowing him to stay with them during the day, but if we don’t get his meds regulated soon I’m not sure how long they’ll be able to have him there. He can be extremely difficult to be around and lately he has been testing the patience of the two MOST patient people in his life, his grandpa and grandma.

My health has been okay lately. I’m still trying to get my prescription renewed for my CGM and pump supplies, but I’ve still been unable to reach anyone at Solara medical supplies. Tomorrow I will try once more, before I call my endocrinologist’s office and ask them for advice. 

As of right now, Michigan is the 3rd state, out of 50, with the most COVID-19 cases. 1st: New York, 2nd: New Jersey, and 3rd: Michigan. It blows my mind that the recovery rates in the U.S. are nowhere near what they’ve been in other countries and the cases of COVID-19 have surpassed Italy and China. This virus doesn’t discriminate. It doesn’t care how old you are, how rich you are, what color your skin is...it just spreads like wildfire. And yet there are still people out there who aren’t taking things serious and they’re the ones who are allowing this virus to continue to spread. It’s been 21 days since my son Levi and I have been anywhere outside of our own neighborhood. It’s been rough, we’ve been dealing with boredom and cabin fever the best we can, but we’re doing our part with social-distancing and we will continue to do this until it is safe for EVERYONE…

I’ll end this post by saying...Stay Safe. Stay Home. Wash Your Hands. Stay Hopeful.

All my Love and Hope,

Sarah aka Hopeful Dreamer

Redo - just a poem I wrote

REDO

Can I get a do over?

Today can go to hell

Can I try again tomorrow?

I’m just not doing well

Sorry I need to reschedule

Let’s try again real soon

Sorry it just won’t work today

Nothing works before noon

My body is so broken

My brain won’t let me sleep

I can’t explain each symptom

They all just run so deep

I don’t know when I’ll be able

Not sure when I’ll feel good

Cancelling and rescheduling

Second guessing if I should

I’m very unreliable

I’m always running late

Missing out on memories

Is what I truly hate

I never take for granted

The days that I feel able

Just wish that there were more

And I could feel more stable

Redos don’t exist

But each morning is a gift

A chance to make some memories

And give my soul a lift

-Sarah M Rozeboom

03/02/2020 (started)

03/17/2020 (finished)

COVID-19 March 21-23

Saturday, March 21, 2020

I’ve been feeling really off lately. I suffer from PMDD (premenstrual dysphoric disorder) and since I should be getting my period in the next 5-6 days I’m pretty certain that this is the reason why I’ve been so fatigued and depressed, on top of the normal PMS symptoms of cravings, feeling bloated and high blood sugars. Anyway, it obviously doesn’t help that we’re in the middle of the COVID-19 social distancing. The only positive thing about all of this is that I don’t have to constantly see what I’m missing out on every time I go on Facebook, because EVERYONE is going through this. Usually when I’m feeling so fatigued and unable to do much of anything except sleep, I’ll have to witness friends getting together, having fun with their kids/loved ones, going on vacations, etc.

I’m praying and thinking about every single person who is struggling right now, but especially those who suffer from various mental health issues and are having to go without therapy for the next month or so. The mind can play ugly tricks during times of high stress, so I can’t imagine what some people are experiencing at this moment.

Monday, March 23, 2020

First off I wanted to point out that Saturday’s post was put aside for one reason or another and I completely forgot to finish so I’m just putting today’s post with it.

This morning at 11am Gov. Whitmer issued the entire state of Michigan to stay-at-home. Only essential workers will continue to work, but even most of those workers will be limited/reduced. This will be issued through, at least, April 13. Many schools around the country have declared that they will be shut down for the remainder of the school year. What does that mean for our kids? Will they automatically move on to the next grade level if they’ve been doing well thus far or will there be tests that they will be made to take at some point to determine whether or not they will be able to pass their current grade? I’m not sure how to even feel about any of this right now. This is all happening so fast.

Here are some facts (mainly for myself and the boys to some day look back on and remember the COVID-19 crisis)

Global confirmed cases: 372,563

Total deaths: 16,381

Total recovered: 100,885

U.S. Confirmed Cases: 41,511

Total Deaths: 499

Unfortunately, there’s talk about how the worst of this virus is “just around the corner” and that doesn’t help the panic and hoarding people have been taking part in. I think I’ll end this post for today and once I can wrap my brain around everything that is happening right now a little better, then I will post again. Stay Safe. Stay Healthy. Stay HOME! We are in this TOGETHER! #AloneTogether #Unity #COVID19

Love and Hope,

Sarah aka Hopeful Dreamer

Tuesday, March 17, 2020

The world is a scary, stressful place right now. This COVID-19 virus has been challenging for SO many reasons. It has completely upturned the lives of EVERYONE, there is not one single person in the country that this virus has NOT affected. This social-distancing is somewhat easy for those of us who do it on the regular due to our chronic illnesses, but to do it for at least 3 weeks, with kids, is a completely different story. When I self-quarantine, it’s for a couple days, and I pretty much don’t leave my bed. It’s only, technically, day two of “homeschooling” and let's just say, there’s a reason I NEVER wanted to be a teacher nor have I EVER considered homeschooling. I’m horrible at keeping a routine and I’m not very organized (ask my mom if you don’t believe me). On top of the “homeschooling” I’ve been trying to stay on top of all our medical “stuff” like appointments that need to be cancelled and prescriptions that need renewals and refills. I’ve been put on hold more times than I can count, and have had to listen to the same pitchy “elevator music” over and over, day after day, just trying to get prescriptions renewed and appointments cancelled and if I’m lucky, rescheduled. 

I’ve become the “mean mom” and have had to turn away neighborhood friends, and tell my boys that they can play outside, but NOT with friends, only with each other...let me just say, they can rarely be in the same room without starting some sort of argument/fight, so I’m not surprised they have yet to play TOGETHER outside. I’m lucky enough to live a block away from my parent’s house, so Landon has been spending his time helping my dad and neighbor’s with yard work during the day and keeping busy over there while I try to do some “homeschooling” with Levi. Meanwhile, the stores are still running out of toilet paper, milk, meat, etc. The restaurants and bars have ALL banned customers from dining in, therefore the bars are completely closed but most restaurants are still offering delivery and curbside pick-up. As a parent of a child who is prone to severe, life-threatening respiratory infections and also as someone who happens to fall in the high-risk category due to multiple chronic illnesses, these extreme measures are actually A-OKAY with me. Unfortunately I had 5 very important appointments scheduled during the next 3 weeks and ALL of them have been cancelled, none of them are able to be rescheduled until further notice, so the waiting game continues. I pray that if we ALL work together and keep up the social-distancing as much as humanly possible, that we decrease the severity of this contagious virus that continues to kill and spread like wildfire. Wash your hands. Stay home. Wash your hands. Help those who are vulnerable. Wash your hands. Pray, send positive vibes and just keep hoping that we can contain and stop COVID-19 sooner rather than later. And for the love of all that is good STOP HOARDING TOILET PAPER!!!!

With Love and Hope always,

Sarah aka Hopeful Dreamer

Saturday, February 29, 2020

Happy Leap Year 2020! This week, although better than last week, still started off a bit rough. We never really know what Landon’s attitude will be in the mornings. He could be horrible the night before, and wake up just fine and ready for school, either way we’ve learned to just hope for the best but prepare ourselves for the worse. This coming Thursday we have his first appointment with a new psychologist/psychiatrist to start him on some much needed counseling. We have been through many different counselors/therapists in the past, and have yet to find the right one for Landon. My hope is that this one will be able to help Landon work through his various feelings and emotions and teach him ways to better control his reactions to the negative ones. I’m also praying hard that myself, Shawn, Levi, and my parents will ALL get guidance on how to help Landon and how to heal from the damage his negativity has created. There’s a lot riding on this appointment. 

Over this last month, I’ve come to realize just how hard it is to find help for parents/caregivers of teens with mental illness. There is just way too many waiting lists out there and when you have a child who is in crisis, the waiting is detrimental in more ways than one. The child and those who care for him and live with him suffer tremendously. It’s extremely disheartening to say the least, and the relationships within the family suffers so much. Thursday cannot come soon enough. 

Wednesday, March 4, 2020

Today I had an extra long, extra hard Physical Therapy appointment. I left sweaty, but I also left feeling incredibly accomplished. I’ve been able to do more in my hour long appointments than I ever thought I’d be able to do and my physical therapist, Meghan, has been AMAZING! For such a tiny, petite lady, she sure knows what she’s doing. I have one more month of physical therapy left, and I already know I’m going to miss it once I’m done. 

Tomorrow is the big day! At 1:00 pm Landon has his first appointment with Dr. Thomas, his new psychologist. I’m trying to get all my notes ready to bring along to this appointment so I don’t forget anything. There’s so many underlying issues with Landon that can easily be forgotten/overlooked at these types of appointments, but because they seem to all impact each other I don’t want to forget to fill him in on something that could potentially be important. Praying and hoping that the appointment goes well, and this doctor can help ALL of us heal.

Two weeks from today I have my appointment to meet with the Osteoporosis specialist and then the following week I have my appointment with the Orthopaedic specialist to help figure out what exactly is going on with my spine and hips. I’ve been warned that they will most likely want to order an MRI, along with some other testing, possibly a bone marrow biopsy and/or biopsy of the fluid around or in between the affected vertebrae. The MRI doesn’t sound bad, but the other testings sound like they could be pretty painful, but I’m ready and willing to undergo any tests if they could potentially give me answers. It’s going to be a very busy month packed with a lot of very crucial appointments for both myself and Landon. The sunshine and warmer weather is definitely a mood booster and I’m hoping it sticks around to help keep my mood and overall health boosted. *Fingers crossed* Hope these updates find you all doing well and staying healthy! 

Love and Hope,   Sarah aka Hopeful Dreamer