Retinal Cysts

Last week, Monday, I had my 3 month Retina Specialist appointment. I’ve been going for over a year now, every 3 months, to check on some cysts that appeared, primarily on my left retina, but a few smaller ones, at one point, showed up around the right retina as well. I also had some burst blood vessels show up in both eyes that they’ve been keeping a close eye on. At every appointment I was showing improvement, but not enough improvement to move my appointments to every 6 months, until last week! YAY!! My cysts and burst blood vessels in my right eye have completely disappeared and in my left eye I only show a couple small burst blood vessels that are healing and the larger, and last remaining cyst is continuing to decrease/heal all on it’s own. My retina specialist believes that my better blood glucose control and weight loss had A LOT to do with my eyes being able to heal on their own, without having to start any steroid injections. (getting injections every few months in my eyeball(s) did NOT sound appealing) She also believes that only the damaged blood vessels were related to my diabetes, and that the cysts may have been linked to Lupus or some other auto-immune disease. So as of last week, I officially have only two appointments every year with my retina specialist! God knows I have enough upcoming appointments with various specialists in the near future, if I can cut back on seeing one less frequently, I’m ALL FOR IT! 

Love and Hope,

Xoxo Sarah aka Hopeful Dreamer

#RetinaSpecialist #EyeCysts #DiabeticRetinopathy #T1D

What You See

When you see me out in public

Or even on social media

You see only what I allow you to see.

I’ve become a pro at applying makeup

I know how to dress to impress

To look completely put together

To look healthy and pain-free

To mask it all with a smile

When you see me on those rare occasions

I had a moment, or day, if I’m lucky

Where I felt good enough to shower,

Good enough to put in the effort

Good enough to get out of bed

Good enough to capture a rare selfie

What you don’t see 

And what I only allow my family to truly witness

Are the days when I can’t get out of bed

Days when I don’t have the energy to shower

Days when my pain is so high the only way to relieve it is sleep

Days when I can’t eat anything solid

Days when I have to shut myself in the bathroom

Days when the pain is so bad I become nauseous

Days when the nausea has me running to the bathroom to vomit

Days when my face is so pale it looks gray

Days when my skin develops itchy, painful, blotchy rashes

Days when I feel worthless and ugly

On those days I won’t post a selfie

I won’t be seen in public

I rely on my husband and parents for help

On those days I’m isolated and alone

I feel stuck and utterly exhausted

On those days I hold on to hope

I hope that tomorrow will be better

I hope that tomorrow I’ll be a better mom and wife

Every day I hope that morning brings less pain

Better blood sugar control and I’ll be able to get things done

I hope and pray that I’ll have more than just one good day

I hope and pray that the future holds more for me

And that there’s a reason for all this suffering

Love and Hope,

Sarah aka Hopeful Dreamer

 

 

 

 

Tuesday, January 28, 2020

Today was, finally, a good day. I was able to shower, eat a meal, and stay out of bed. After a fun night out with friends on Saturday, my body took a couple of days to recuperate. Anyone with chronic pain and fatigue knows that even a simple evening out with friends, usually means you’ll have to set aside a couple of days to just rest. Everyone at the party complimented me on how I looked that night, but in all honesty, I was just proud of myself for making it out and getting a rare chance to hang out with my husband, and a bunch of our friends. Compliments have always been hard for me to take. I have no idea why, I mean they make me feel good about myself, but also guilty. Let me explain. The guilt comes from being able to look so healthy when in reality I’ve been anything but. It comes from a place inside of me that feels like a fraud. Obviously I wouldn’t go out in my pajamas but when I DO get a chance to make an appearance I go ALL OUT. I wear outfits that I might not have the chance to wear again in a long time, if ever, and I try to look put together, rather than a complete mess, like I usually am. My husband was amazing this weekend. I would catch him watching me throughout the party, subtly checking in on me without having to say anything. It was endearing to see this side of him that I very rarely see. I can’t thank my parents enough for watching the boys for the night so we could actually socialize with friends and get out of the house for once. It’s these little moments in life that makes me feel so incredibly blessed and so incredibly loved. I have such a beautiful and loving group of friends, an AMAZING husband and of course two of the most supportive and loving parents in the world! 

This week I have to find a morning to go in and have some blood drawn for a couple different things. My Osteoporosis specialist wants a bunch of labs drawn before my initial appointment with her next month, my Endocrinologist needs some done and my Rheumatologist also wants some drawn. Of course I need to fast for a couple of them, which any diabetic knows is hard and depends on whether you have a low blood sugar during the night or early morning. Hopefully I can get them done tomorrow morning or the next so I won’t have to keep thinking about it. My hip and lower back keeps hurting me by the end of every day, and my bones, overall, seems to be extremely stiff in the mornings and crack very easy. I keep hearing that the next test they might want to have done is an MRI…unfortunately that means I’d have to remove my CGM and insulin pump for that test, but all things considered, that’s not so bad. If I want more answers I’m willing to undergo any tests they think might help. Sorry this post isn’t very exciting or anything, but maybe that’s a good thing. For anyone reading this, I hope you are feeling well today, and if not, I hope tomorrow will be kinder to you. 

Love and Hope,

Sarah aka Hopeful Dreamer   

Me and my husband, Shawn

My BEAUTIFUL friends 

Pump Problems/Landon's 13th Birthday

For the first time since being on an insulin pump I experienced an occlusion (clog) during the night and didn’t wake up when the alarm went off alerting me to this problem. I woke up with a blood sugar over 500 the next morning. I was drenched in sweat and absolutely exhausted. After refilling the reservoir and changing my pump site I fixed the occlusion problem, but as any diabetic knows, once you have blood sugars go that high, it takes your body a long time to get back to normal. I started chugging the water, so I could keep the ketones at bay, and pee out the extra sugar my body was retaining. I didn’t eat for nearly 24 hours, trying to get my sugars down. It’s insane to think that my body’s “normal” blood sugars used to be in the 300-400 range on a daily basis and now that I”ve maintained better control, my body just can’t handle anything higher than 250 without me feeling the affects of those high blood sugars right away. 

It’s now Saturday and I was able to take a shower, have some food, and although my sugars are still running on the higher side, I’ve been able to get them down a lot quicker. My energy is slowly returning, and I don’t smell like sweaty B.O. (Hooray!) 

Tomorrow our oldest son, Landon, turns 13!! That means we will officially have a teenager!! Am I really old enough to have a teenager?! Whether or not I am, it won’t stop the inevitable of my first born turning the big 13 :( Why does time seem to go by SO QUICK once you become a parent? I understand now why everyone would tell me to enjoy them while their young because before you know it they’ll be teenagers. No truer words were ever spoken. 

Landon’s first couple years of life were a roller coaster. After a month in the NICU; a prolonged stay at 4 months old for failure to thrive and a week and a half long stay at the PICU in an induced coma at 1 year old, we almost lost him 4 different times. We were told over and over that it’s a miracle that he is even alive. On one particularly hard appointment with one of his specialist when I was feeling like a complete failure, the specialist pulled me aside and said, “Sarah, look at him. The fact that he’s putting up a fight, breathing and is still alive, proves that you are doing an AMAZING job. He’s still living and breathing, whatever you’re doing, keep doing it. It’s because of you that he is still here with us.” She instantly became one of my favorite people ever. Landon has overcome SO many health issues of his own. And he has taught me SO much about being patient and resilient, and gave me a reason to fight, not only for him, but for myself as well. Let's be honest, if I didn’t fight for myself, I wouldn’t be able to fight for him. Now, that baby boy who had SO much against him, is turning 13 years old and I couldn’t be more proud. He struggles daily, overcomes so many obstacles daily and often takes his anger and frustration out on me, but he’s alive, he’s breathing, and he’s still a fighter. I’ll end this blog by saying “Happy 13th Birthday Landon! I Love you SO very much! You are stronger than you’ll EVER realize, you are caring, you are independent, you are a hard worker, and I can’t wait to see what else life has in store for you. Love always, Mom”

Love and Hope,

Sarah aka Hopeful Dreamer  

Landon in the NICU, Jan. 19, 2007

Landon, April 2007, 4 months old - Failure to thrive. Red blood cell transfusion and biopsy of stomach.

Landon 12 months old Jan.2008 - PICU, induced coma, lung infection, and croup

The Story Behind "Hopeful Dreamer"

I’ve recently been asked about the name/term “Hopeful Dreamer” so for this post I thought I’d attempt to explain it. 

My grandpa, or to my boys, papa, was one of the most AMAZING men and such an important person to everyone in our family. After he passed away, December 9, 2017, I knew in my heart that I was going to get a tattoo (my first) to remember him by. I decided to make copies of his journal entries from his time in the Navy and his years in ministry, with the help of my cousin Amber, to get ideas. My grandpa was a preacher, and if he brought me (and my cousin Amber) up during one of his sermons it was ALWAYS to reference that we had inherited his “dreamer trait”. We were dreamers just like our grandpa and I LOVE that we share this trait. So, I knew I wanted the word “dreamer” to be a part of my tattoo. The word “hopeful” was always a word he used to describe me, so that came easy. When I was going through thyroid cancer and found myself in a deep depression, I had a conversation with my grandpa that I’ll never forget, it went something like this,

“Sarah, you are the most hopeful person I know. Everything you’ve been through these past couple of years is proof that God has a bigger need for you here on Earth. He isn’t ready to welcome you home in heaven yet, and neither am I. Hold on to that hopefulness of yours so you can find that reason. You have a lot more living to do sweetheart.”

I was 14 years old, and my grandpa gave me back my hope that day, without even knowing it. SO… I started cutting out letters to spell out “hopeful dreamer” in my grandpa’s handwriting (which wasn’t easy since his handwriting is super messy) and I emailed my idea to a local tattoo artist that my friend recommended. The end result was AMAZING. I chose the inside of my left arm and I will NEVER regret getting it. So that is the shortened version of the story about my name, Hopeful Dreamer.

Fighting Depression

I’m not always an optimistic person. I’m extremely patient, and resilient, but I struggle all the time with my depression. Medication helps, but anyone who struggles with depression knows that although medication helps, there are times when that darkness still emerges. Thoughts of being a burden come to the surface and cause me to feel completely alone and utterly guilty for putting everyone I love through SO much. There are days when I’m just WAY too hard on myself. I try and remember the reasons for why I’m fighting, why I keep going every single day. It helps, usually, but depression is a real stubborn son-of-a-bitch. I guess what I’m trying to say is, I don’t want people to think of me as an overly optimistic, happy-go-lucky person. I’m not. And I’m okay with that. Every single person has crappy days. Life is tough. But it can be beautiful too. It’s hard to remember that when life kicks you when you’re already down. But if you’ve survived “kicks” before and have witnessed any kind of beauty after, isn’t it worth getting back up? Isn’t it worth fighting so your loved ones can keep loving and supporting you? There’s a reason for me to still be here, and there’s a reason you’re still here too. So, I don’t know about you, but I’m going to keep thinking about my reasons for fighting. I’m going to keep getting back up after every kick life gives me. I’ve made it this far in life and I’m not willing to stop. Find your reasons. Find the beauty. And get your ass back up and fight. 

Love and Hope,

Sarah aka Hopeful Dreamer

October 30, 2019 - Low Blood Sugar Black Out

 

 October 30, 2019 -In the E.R. after I blacked out/fainted and sliced open my nose on the corner of a shelving unit. Also I unknowingly fractured a couple vertebrae in my spine, but didn't find this out for over a week after this incident.

November 1, 2019 - SEVEN stitches in my nose. It was SO PAINFUL getting those stitches, no fat on the nose for the numbing shot to do any good. Fortunately for me, my nose, (unlike the rest of my body) heals up super fast.

November 5, 2019 - At the doctor's office right after the removal of my stitches. SO PLEASED with the results! Thank you to the unknown  (not to mention handsome) E.R. doc who sewed my nose back together :)

Keep Going Hopeful Dreamers

Tired.

Every single day I’m tired.

Pain.

I feel it in some form or another throughout my day.

I fight battles with my own body,

Every minute of every day.

It’s exhausting.

It’s depressing.

It’s frustrating.

It’s isolating.

It takes away your independence.

It takes away your freedom.

It takes away time with loved ones.

It makes you feel like a burden.

It makes you feel guilty.

As someone with multiple chronic illnesses

And someone who has battled with my own body

Every single day for the past 23 years,

It NEVER gets easier

You NEVER get “used” to it

There is NO cure

You will ALWAYS be fighting for answers

For treatment options

For a quality of life.

The fighting will NEVER stop

The depression will always be in the background

Lurking and waiting for the darkest of days to arrive

The uncertainty will always remain

But if you fight to find support

From family and friends

Doctors, therapists and even social media

You WILL find the strength to keep going.

Talk to your support people

Don’t forget that they care for and about you

When you feel alone

Especially when you feel depressed

Reach out to SOMEONE

This journey through life can suck,

It can exhaust the strongest of people

But please don’t EVER give up.

If you’re reading this and feel alone

Or feel on the verge of giving up

Reach out to me,

Allow me to be a support person for you.

We’re ALL on this journey through life

Remember tomorrow is a new start,

A new day to fight your fight

Or a day to take a break and just breathe

Here’s to hanging on to hope

And dreaming of a future filled with answers

And opportunities.

Here’s to my fellow Hopeful Dreamers.

#hopefuldreamers #chronicillness #t1d #diabetes #osteoporosis #health #support #depression

Just Another Week

This past week had its ups and downs. Chronic fatigue and body pain are a daily struggle for me. When I have a high pain day I can almost guarantee that my blood sugars will also be on the higher side, and that just adds to the overall fatigue. Most mornings I wake up with stiff, painful joints, on top of an extreme light-headed feeling when I initially stand up. I've come to realize that the colder it is outside, the stiffer and more painful my body becomes, especially my right hip. Being a 35 year old, 5 foot 11 inch tall Dutch girl, I NEVER would've imagined I'd be suffering from something like osteoporosis. I'm actually 5'10" now, due to those compression fractures in my back...CRAZY!

A couple days ago I scheduled my first appointment for my osteoporosis and the first available wasn't until March 18. I have an upcoming Endocrinology appointment on January 22nd and might ask them for any advice on what to take for the high pain days, especially since it seems to make my blood sugars go high throughout the day. 

This might seem insignificant to most, but Thursday morning I was actually able to wake up and take BOTH of my boys to school! I usually always need to wake Shawn up to drive due to my pain, light-headedness, blood sugar, etc. But that morning I was feeling well enough to send my boys off to school all by myself. It's definitely one of the things I miss most. I also REALLY miss painting. I am an artist and creating acrylic paintings on canvas is something that feeds my soul in a way nothing else can. I haven't been able to paint since the beginning of last summer. My energy levels are crap and when I DO have any extra energy it goes to my family, running errands, etc. I pray my team of doctors will find some treatments that will help me achieve better energy levels and lower the pain days that have become such a normal thing for me. My end goal is to achieve a quality life, as of now, there really is no quality to my life. I've learned to never take for granted a good day, but they seem to be so rare, and that's the depressing part. 

Today, was a good day. I was able to take a shower, eat some good food, change my insulin pump and hang out with my boys. More days like today would be ideal :) I'll try and post soon. Have a wonderful weekend!

Love always,

Sarah

Hopeful Dreamer 

Staying Hopeful

For someone who suffers from depression and multiple chronic illnesses you would think staying hopeful would be a daily struggle. I've been trying to decide whether or not I've been able to stay hopeful through this journey simply due to being a positive person, when in reality I believe that I've been able to hold onto hope, even in the darkest of moments, because I am one of the lucky ones who has been blessed with an amazing support system. My family and friends have never once given up on me, so how could I possibly give up on myself? Don't get me wrong, I've wanted to give up MANY times. I've wanted to throw in the towel and just let disease have it's way with me. But how in the hell could I do that when I have two growing boys who still very much NEED their mom; a husband who has given his ALL to help me through this journey; parents who have sacrificed more than I'll ever know to support and love me and my family; and friends who have continued to be by my side since middle school or longer? I refuse to let them down without fighting. So, when it comes down to it, I have to thank my loved ones, the many people in my life, whether or not they're still here or you're one of them reading this right now, if you have prayed for me, loved me and supported me in any way over the years, it's because of you that I've been able to continue this fight, it's because of you that I've been able to hold on to hope. Thank you for loving me and never giving up on me.

Love always,

Sarah

#hopefuldreamer #t1d #chronicillness #disease #health #diabetes #osteoporosis #support

My First Ever Post!

It only took me 8 years, give or take, to start this blog. But I am finally doing it! This first post will basically be letting you know about what this blog is all about and letting you know about me, the blogger.

First, my name is Sarah, I am 35 years old, married to my husband Shawn for the past 13, almost 14 years. I am a mom to two boys, Landon (13), and Levi (9). We have two cats who are 5 years old Gino (male) and Raven (female) and a yellow bellied slider turtle named Tulip (female) who is about 10 years old. I am a Type 1 diabetic (for the past 23 years), thyroid cancer survivor (for the past 21 years). I've suffered from depression for 20+ years, Chronic Fatigue for the past 10 years, IBS since high school, and have been recently diagnosed with Pre-Lupus, Osteoporosis of my right hip, and Osteopenia (extreme low bone density) of my spine along with deformities of my lower vertebrea from multiple compression fractures that healed wrong. This blog is going to be a way for me to document my journey into finding answers and treatments for my various health conditions and how it affects my daily life. As of right now, I am not on any treatment for the recent dianoses, I've only been diagnosed with those last issues in the past three months or less and have many more tests and appointments awaiting me in this new year of 2020. 

The last 3-5 years my health had been drastically going downhill. Most mornings I woke up with extreme body pain, especially in my joints, I would have days that I couldn't get out of bed, sometimes 5 days a week where I couldn't even function. My quality of life had been utterly ripped away and I couldn't function, let alone be the mom, wife, daughter and friend I so badly want to be. My loved ones deserved more and I deserved more. 

3 years ago I made a huge decision as a type one diabetic to go back on an insulin pump and take advantage of the newest technology available to me by trying out a CGM (Continuous Glucose Monitoring system) as well. A big reason to take advantage of this equipment was to prove to my many doctors that my newest symptoms I'd been experiencing had nothing to do with my diabetes, so I worked hard during these last few years to better my diabetes, find a new primary doctor and endocrinology team to fight with me for answers and treatment and so far I've been lucky, impressed AND shocked with what we've found out. I still struggle daily with fatigue and pain since we haven't been able to start any treatment other than supplements, as of yet, but being able to find answers has been my main goal and continues to be my goal. 

As I move forward with this blog, I want to urge you to leave comments about your own health struggles, especially if you can relate with anything I am writing about. I strongly believe in being hopeful, even in the darkest of days. Which is why I chose theartofhopeful as my blog domain. I will also be posting on my struggles as a mom with chronic illness, because lets be honest, being a mom in general is one stressful job, but add chronic illness and it amplifies that stress. Our oldest son also has some chronic illnesses and is on the autism spectrum, so along with my own health, his health is a priority for me as well, and is the main reason I had put my own health on the back burner for so many years. 

Bear with me as I try and get into a routine with this whole blogging thing. Any tips would be very much welcomed. Thank you for joining me on this personal journey through life and all of its ups and downs. Happy New Year and Best Wishes for 2020!

Love,

Sarah 

Hopeful Dreamer