This Spoon

 

This Spoon

This spoon

It brought me joy

This spoon

It gave me a smile

This spoon

It was comforting

This spoon 

It knew it was needed

This spoon

It was more than a utensil

This spoon

It found its purpose

This spoon

It belonged to me

This spoon 

It came home with me

Home Again

This past weekend, I spent time in Princeton, NJ at the HealtheVoices conference thanks to Johnson & Johnson. They paid for my travel, hotel, and other related expenses in exchange for me providing my own voice. My voice as a patient advocate, a person living with diabetes as well as multiple other chronic conditions. They asked for me to be authentically myself. The good and the bad as I felt comfortable to share. In Friday night’s keynote, we were encouraged to express the masterpiece that is our life. Poetry got me through my teen years, and this session helped spark that love again. My last post was the poem inspired by that presentation. This next poem was written in my living room as I digest my feelings from them conference. Digesting the information will come later. Thank you, HeV and J&J!

Hone Again

As I sit here remembering 

Recalling my journey

Reminiscing about yesterday

Friends now family

Understanding my pain

   My heartache

   My troubles 

   My woes

Holding them close

   Snuggly in my heart

   Safely, securely, protected

   Accessible to me as needed

Knowing we all have pain and heartache 

Same yet different yet the safe

Different shapes and patterns that fit together 

Like a beautiful melody

   Safe and warm

   Lived and heard

c2025 Diabetes Ramblings

Diabetes Said to Me

 Diabetes said to me, "You think you know me? 

Just wait! You're in for a wild ride!"

Diabetes said to me, "Your doctor thinks you've got this.

Ha! How easily fooled he is!"

I replied to diabetes, "I've go this! It will be easy!"

I thought I knew all I needed to know.

Like the song that doesn't end, neither does diabetes.

Like the changing seasons, 

days of brightness turn into days of darkness.

Conversations with caregivers, family and friends,

well-meaning busy bodies. 

Sometimes soft and subtle, full of quiet contemplation.

Suddenly turning fast and loud, judgmental. 

Needing to find a way to quiet their critiques.

I open a box of crayons where each one is different.

Every color is beautifully unique.

Like my diabetes. Unique to me.

 Not simple to understand but part of me now.

Diabetes said to me, "You think you know me?"

I replied to diabetes, "You think you know ME?"

 

c2025 Diabetes Ramblings

 

 

 

I've missed you!

During the past few years, I've been away from my blog. I've written several posts in my head, but unfortunately those posts have not yet made it to the internet. I've been dealing with depression, anxiety, health issues, teaching during a pandemic... but I've also had the joy of family, friends, students.

I've been reignited by the HealtheVoices conference, podcasts, and Instagram posts to continue my advocacy work. I don't report on policy or pharma. I want to share my story.  The story I was looking for when I was diagnosed. The story that many of us are looking for. Medical information is everywhere. The patient story is what I needed to hear back in 2008 when I was told I had Type 2 diabetes. The patient story is what I need to hear when I had my first stroke that was different from other strokes I've heard about.

This blog is a patient's story... My story. And like any good story, this one leaves you with a cliffhanger... 

(to be continued)

Want to Follow Me?

 Until I get my blog up and going again, please find me on Instagram!

Why am I here?

Why am I here?

I've been thinking a lot about this question lately. Especially since my stroke in February. We all question our purpose, but when faced with a situation that could be fatal. I don't like to think about it, but even though I came out ok from my stroke, the fact is that I could have died if it had hit a different part of my brain. I am thankful every day that I am still here, but that still brings up the question...

Why am I here?

This is a question I have been asking myself. Is there a purpose for my life? I'm meaning beyond the raising my children and being here to see my grandchildren.

I believe the answer is yes. My purpose is to share my story. To let someone know they are not alone. And if someone feels alone, my hope is through my words I can help them feel less alone.

Why am I here?

If someone needs a friend or a listening ear, my contact information is in my profile. Please use it. I am here for you. THAT is why I am here!

Uninvited Guests

This is a post that has been going around in my head for two months now. I know I want to... need to... write this. Not just for others, but mainly for myself. I need to get my thoughts and emotions out. That is the reason for my blog. To explore what I'm dealing with as a person with chronic illness. If by sharing I help one person who is also struggling know they are not alone, I have me my purpose.

People dealing with a chronic illness know that, quite often, the medical file usually doesn't stop with one diagnosis. Whatever the cause - genetic, autoimmune, illness, or just pure luck - rarely do we see a person with only one condition in the world of chronic illness. I started my journey in March 2008 with one condition - Type 2 diabetes. Just this year I have added to the list.

In the last few years, I found out I have a fatty liver, a cyst on one of my kidneys, and plantar fasciitis. Earlier this year I finally got an answer to my chronic pain - fibromyalgia. Thankfully it hasn't caused too much trouble in my job as a first grade teacher.

On February 19, my left thumb started to feel numb. I thought that was strange but didn't think much of it. Maybe I'd call the doctor the next day or so if it didn't go away. The next morning, I notice my left upper arm felt a little numb. Not totally numb. I could still feel pressure. Probably best described as the numbness you feel when the dentist first gives you a local injection to fill a cavity. Within less than an hour, my entire left side had this sensation. Off to the ER I went! (Thankfully it was a snow day so I didn't have to request s substitute or write sub plans!)

After tests and doctor appointments over the next several days, it was determined that I had a right thalamic stroke. In other words, stroke in the right side of the thalamus, near the center of the brain. This area of the brain affects sensation which explains why my left side was experiencing diminished sensation (numbness).

I am now officially a stroke survivor.

Chronic conditions are like uninvited guests. You don't want them, but sometimes it's next to impossible to get rid of them. I still have diminished sensation on the left side of my body, most noticeable on my face and upper arm. I may need to learn to live with this for the rest of my life. If you can't get rid of the uninvited guest, you might as well make friends!

What to Do?

There are some days that life, or at least a part of life, gets overwhelming. The world might feel like it's closing in around you. You might not sure what task to tackle next. How do you get out of the rut in order to help yourself while also living up to the expectations of others?

If you're expecting a magic answer here, you might want to hit Google again. You won't find it here. Some days I feel pretty darn lost. Then again there are some days where I feel I've found my path and faced in the right direction. Then some days I feel a mixture of both.

In a month we will be ringing in the new year. It's hard to believe that it's almost 2019! It's the time when so many make resolutions, knowing the odds of breaking them are not looking good.

I should probably take a step back, take a deep breath, and remember it's still the end of November. I don't need to take that magic cure-all pill. I need to look at my life, my health, and my goals to see what is really important in my life. I need to decide which direction I want 2018 to take. But, again, before getting too into that, let's make it through the month of December first (as well as tomorrow, the last day of November).

Focus on the Thanksgiving message: counting blessings! Once I force myself to see everything I have going for me, it helps me to see where my life seems to be heading. It helps me to tweak my goals and life plans as I work toward being a healthier person in general.

Think about what you want for you. Not what others want for you or what you think you "should" do.  Tweak these goals as you accomplish the little steps, keeping in mind your overall goal... a long and healthy life.

Sharing My Story

In July of this year, I was invited to Boston University to discuss Bridging the Chasm between Pregnancy and Women’s Health over the Life Course.  I was invited as a woman who had dealt with gestational diabetes (five times) and currently lives with Type 2 diabetes. I saw a need for education and care about my gestational diabetes beyond the birth of my children.

It is known that women with gestational diabetes have a much greater chance of developing Type 2 diabetes. I learned that in my research as a young mother, wanting to be proactive about my health. Yet I wasn't tested until March 2008 for Type 2. This was at my request. It was not the suggestion of my doctor. This was 3.5 years after my fifth child was born. My oldest child was 15 years old. Why had I not been tested before this?

In this picture I'm sharing my "why". Why did I feel the need to be at this conference? I felt the need to give a face to the patient. I was and I am the patient. I want to make a difference, not just for other mothers dealing with gestational diabetes, but also for my children. Some of my daughters may want to be mother. Do they face the same fate?

After my experience, I am now feeling drawn to help women with gestational diabetes to receive the post-natal care that they deserve. Yes, pre-natal care is vital for both mother and child. However mothers also need after care well beyond the birth of their child. Some referred to the time after childbirth as the fourth trimester. Ideally this care would last for the rest of a woman's life. Mothers need to receive healthcare so they can be there for their families.

As a busy mother, wife, and teacher, finding the time and balance to accomplish this is sure to be a feat. I want to step up my advocacy. Raise my voice. Help more people. I don't know how long it will take me to climb this mountain, but I know it starts one step at a time.

WEGO Health Awards: Endorse me?

I've been nominated for a WEGO Health Award for my blog. Just getting nominated is such an honor. Now I need endorsements to reach the next level. Please click below and find the button on my nomination page to give me an endorsement.

While you're there, check out the other advocates and categories. Endorse away!

Two T2s Discuss the Freestyle Libre

My dear friend Phyllisa (at Diagnosed Not Defeated) and I were recently together at HealtheVoices18 and discovered that we both were using the Freestyle Libre. We teamed up to give you our opinions on the device.

How long have you been using the Freestyle Libre?

Phyllisa: Since April 2018

Me: December 2017

What do you like about the Freestyle Libre?

Phyllisa:I like the graph charts the most as it gives me detailed information about my blood sugars.

Me: Having the graphs allow me to see how my body reacts to different foods and activities over time. It also helps me understand what my glucose levels do during times when I would be unable to poke my finger.

How has the Libre affected your diabetes management?

Me: As a busy mom and teacher, it’s hard to remember to check my numbers. I love being able to check my blood sugar without the time and hassle of a traditional glucose meter. I can check while teaching without missing a beat. The graphs also help me understand how my body reacts to different foods and activities.

Phyllisa: The libre has had a positive impact on my diabetes management. It allows me to be more in control of my diabetes management and it gives me the opportunity to check my blood sugar multiple times a day, if I want, and not have to worry about the cost of test strips.

How do you explain “that thing on your arm” when asked?

Me: If I’m in a silly mood, I’ll either say it’s a popsocket or that I’m part cyborg. I love seeing their reactions! Most of the time, though, I’ll explain that it’s a glucose sensor and show them how it transmits to the receiver. When my young students ask, I explain that our bodies turn food into a special type of sugar for energy and that sometimes my body doesn’t use that sugar correctly. The Libre helps me determine how much sugar is in my blood.

Phyllisa: Sometimes I say, it’s related to diabetes. Other times I say, it’s a device that communicates with my pancreas. It all depends on how I’m feeling in the moment and who’s asking. I once had a six-year old kid ask and I told her that it was my way of checking in with my pancreas, an organ in my body that isn’t working properly. This device helps me feel like a superhero.

Any comments to others who are interested in trying it? 

Phyllisa: I would check with your insurance company and see if it’s covered fully or how much they will cover. Make sure it is within your budget and it is, then I strongly recommend it. I wouldn’t throw away your glucometers, however. You will need them in between sensors and you may want to compare readings from time to time.

Me: If it’s within your budget, I’d suggest giving it a go. The graphs and ability to test multiple times per day have given me great insight into my own diabetes. Thankfully the Libre also has a spot for test strips so you can test with a finger stick if you don’t feel the same as the reader reports.

If you could suggest any changes to Abbott about the Libre, what would they be?

Me: The adhesive area needs to be a little stronger. My current sensor is loose on one side, requiring the use medical tape to hold it down.

Phyllisa: I would extend the adhesive area because I’ve had two sensors come off because the adhesive stop sticking. I think a wider area would help.

We Are Not as Strong as We Think We Are

When I was working on my masters degree, I found myself wanting to give up more times than I care to admit. I'd cry. I'd yell. I'd hang my head. My husband and children would encourage me to keep going, but sometimes their words stopped at my ears because I wouldn't let them reach my heart. Music, I found, more than often reaches my heart.

During my undergrad days, I was a huge Rich Mullins fan. He was a Christian artist whose music easily touched my heart. Luckily I still had some of his music from back then and I brought it back into my life as I struggled to balance family, work, and school. "Hold Me, Jesus" was a regular song on my playlist. I would feel as if Jesus himself was wrapping me in a hug, encouraging me.

Some days I felt so weak. I found this song, "We Are Not as Strong". Even though Rich calls it the "Christian break-up song." I felt as though admitting that we're not always strong was reassuring. I needed someone to say that it was ok to feel weak. The song reminds me that I am "beautifully and wonderfully made."  Even though the song was meant to deal with the sadness of a relationship ending, it worked wonders on my heart to let me know that I could make it through the tough times.

Sometimes, however we need more than a song. We need more than a family member or other loved one. We need more than a best friend with a pep talk. Sometimes we need professional help.

This is something I've just realized and admitted to myself. Although I feel like I'm doing an adequate job managing my life with diabetes, I've decided I need some extra help. Today I met with a local dietitian to help with my nutritional needs. I'm also seeing a counselor for my emotional needs. Of course both of these areas have a huge affect on my general health and happiness. This was not an easy thing for me to do. I'm one of those people who does not like asking for help.

Please, if you're ever feeling like you have a little too much weight on your shoulders, admit to yourself that you can't do it alone. Asking for help isn't a sign of weakness. It's showing how strong you've been for so long and you need to share the load.

We are not as strong as we think we are.

Working on a New Look

Often we go through phases where we feel the need for a new look. Sometimes we might get a new haircut. Other times a new outfit. Well, today it's my blog that got the new look.

With the help of my HealtheVoices friend, Megan Starshak, I have a new logo for Diabetes Ramblings! Megan and I met during HealtheVoices16 and have developed a friendship from there. She was able to take my thoughts and turn them into a beautiful design that I didn't have the artistic or technical skills to create.

I'm so excited and hope you like what we came up with! (Square image here in this post and a banner at the top of my blog.) Thank you again, Megan, for your help and encouragement!

Time with Others to Recharge at #HealtheVoices18

There will be much hugging!

This morning I grabbed my suitcase, my laptop, and headed for the train station. I am on my way to Chicago for HealtheVoices 2018. This is actually my third time attending this conference. I have attended diabetes conferences before, but this one is different. It is not a "diabetes conference." Those attending are online advocates from so many different medical conditions. It's overwhelming and awe-inspiring at the same time

I am honored to have been selected again this year. There are so many people who apply. I learn so much during this conference about others and their conditions, but I also learn more about myself.

I learn about my supportive level toward others. I learn how to take care of myself - not just my medical conditions, but also me as a person. I learn how I can support others. I learn to ask for help.

Over the next four days I will be surrounded by a type of love and acceptance that is like nothing I've ever experienced anywhere else. That is not to say that I am not loved and accepted in other parts of my life. I definitely am! This is different though. This weekend I won't have to explain what's going on. If I'm hurting, I don't have to explain why. If my blood sugar is out of whack, I won't have people patrolling my food choices or activity level. It is understood that I am the expert of me and my conditions.

This is my time to renew and recharge with others who get it, even if their condition is different than mine. This is my time. This is my tribe!


Disclaimer: Janssen covered my travel expenses to attend #HealtheVoices18. All thoughts and opinions expressed here are my own.

In Sickness and In Health

Over 25 years ago, my husband and I made vows before God, family, and friends to be devoted to each other "until death do us part." Another part of our vows included the words "in sickness and in health." We've each had our share of colds, flu, stomach bugs, etc. He's cared for me when I had my gall bladder out and after childbirth. In turn, I have cared for him after surgery and other illnesses.  Most of our "sicknesses" have been different and separate. Until now...

This past week my husband was diagnosed with Type 2 diabetes. We knew it was a possibility. After all I have the diabetic cooties... Umm, just joking. Actually his father had Type 2 diabetes. Knowing the strong genetic factor for Type 2, we have prepared ourselves for this possibility.  We're not happy about the diagnosis, obviously, but we weren't blindsided either.

How are we dealing with diabetes as a couple? So far it isn't any different from when only one of us had diabetes. We've always been supportive and encouraging of each other. I don't know everything going on in his mind about this. My husband is a pretty quiet guy. You won't see him blogging or at advocacy conferences. If you do see him, you will see an intellectual man who is doing his best to take care of himself and his family.

As a person who has lived with diabetes for almost 10 years and is involved in education and advocacy, the hardest part so far is not telling my husband what to do. His diabetes is *his* diabetes. It's not mine. I'm his wife, his partner, his cheering section - I am not his physician, his dietician, his keeper. We learned about his diagnosis only a few days ago, so it will take us time to figure this out. I do know one thing for sure. We will figure it out together!

November 2 - #MakeDiabetesVisible

Yes, we can eat candy!!!

November 1 - #MakeDiabetesVisible

My friend, Mike Durbin, had an idea (he wrote this yesterday, October 31)...

#MakeDiabetesVisible Photo Challenge 

November is Diabetes Awareness Month and it begins tomorrow. During the next 30 days, I will be posting at least 1 photo a day that captures part of my life with diabetes. The goal is to make diabetes visible and show what it is like to live with ALL types of diabetes. The highs, the lows, the finger sticks, the meters, the pumps, the CGMs, the insulins, the pills, etc...  

I invite all of my friends living with any type of diabetes to join me in this challenge. 30 days, 30 photos, ALL types of diabetes. Any social media platform. Facebook, Twitter, Instagram, whatever. Please share, use the hashtag, and let's #MakeDiabetesVisible

 So here is my November 1st contribution:

Working with Other Online Health Advocates

Last year, I met Josh Robbins at HealtheVoices 2016. This was an amazing time where Jansen brought advocates from various mental and physical health areas together to collaborate and network. Even though Josh and HIV and I have Type 2 diabetes, we found that we had a lot in common. Both conditions deal with a lot of stigma and misinformation. I consider myself an educated woman, but that weekend I learned so much about HIV and changed my views about so much.

I was a teen in the 1980s, when the HIV scare was high. The media and uneducated people spread so much misinformation that I thought was true. Twenty years later, Josh and other HIV advocates have set me straight with loving, caring words meant to enlighten and not condemn. I learned even more during HealtheVoices 2017.

The desire to educate along with my desire to be educated helped to form some pretty tight friendships. Those who I have gotten to know have not just become connections that I can refer friends to; they have become my friends as well.

Recently Josh presented at TedX in Nashville, talking about the importance of social media as a means of support. During his presentation, he mentioned some advocates from areas outside HIV. I was honored to be the diabetes advocate that he mentioned. Even though he couldn't pronounce my last name (RARE-ick-ah), the gesture was not taken lightly. I am honored and humbled to have been mentioned by Josh, an amazing man, advocate, and friend. Thank you, Josh!



Disclaimer‬: Janssen Global Services paid for my travel expenses for the conference. All thoughts and opinions expressed here are my own.

The Blame Game

This is my third in a series of posts for Diabetes Blog Week 2017.

The Blame Game, huh? That's one of the prompts for D-Blog Week. Oh such a loaded topic. People with diabetes being blamed for their illness?

Really?

ALL. THE. TIME.


Hey, I have Type 2 diabetes - the ultimate blame game is here! Society is convinced that we are nothing more than lazy overeaters that deserve our fate. Never mind the overwhelming evidence that it's more about genetics than if I ate a Twinkie last week.

Ummm... I don't like Twinkies, but Snickers.... oh off topic...

Yes, there are ways to lessen the risk of Type 2 diabetes through proper eating habits and regular exercise. However this lessens the risk. It does not prevent the possibility. Sometimes genetics bites you in the back side. 

Please don't blame anyone living with any critical illness. No one in their right mind would intentionally cause this for themselves. 

The Cost of a Chronic Illness

This is my second in a series of posts for Diabetes Blog Week 2017.

Today's topic is the cost of chronic illness. This is an awkward topic for me to speak of since I'm not using medication or insulin as part of my diabetes management, which is what most people think about when discussing the cost of diabetes. However, there are limitations in my care that are financially driven.

For example, many people with Type 2 diabetes are limited on the number of test strips they are allowed to get through insurance, if they're allowed any at all. My mom is only allowed two per day. At this time, I have a prescription of four per day. This was my requested number shortly after my diagnosis. Originally my doctor didn't think I needed any. (What?) However after much thought on my part, I called asking for test strips using our upcoming vacation as an excuse. Should I even have to ask for test strips? Should I have to use a vacation as an excuse? Why do I feel hesitant to ask for more? (I'd like at least six so I can test before an after every meal.) Do I fear being judged or turned down, either by my doctor or insurance?

What about a continuous glucose monitor (CGM)? Why can't everyone with diabetes get one? It's obvious the more data someone has about how their body reacts to various foods and activities then better that person can manage glucose levels.Why is it if a person's body still produces some insulin, whether it's not enough or just not using it properly, insurance will deny coverage for a CGM? Oh yeah, the cost. They don't think the benefits outweigh the cost.

Let's forget for a moment the financial cost of diabetes. What about my personal cost? Not being able to enjoy certain foods with my family? Avoiding making pancakes for my kids because I love them so much but they raise my blood sugar even more (even if I only eat 2-3)? Having to stop working in the garden with my family or helping my kids clean their rooms because my blood sugar is low? Does anyone consider those costs?

The cost of living with a chronic illness isn't just a hit to the pocketbook.