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Type 1 Diabetes

New Diabetes case from Sugar Medical for the win!

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I have been given these products as a gift to review. All opinions are my own and are in no way influenced by the company providing the items.

I’d be lying if I said I couldn’t wait to try the following items from Sugar Medical. If you have a chronic illness like me, especially those of you with diabetes, you end up carrying a lot of stuff.

 

 

 

Here is my original “system”- a make-up bag from Target. Sure the bag was cute but it was bulky and wasn’t easy to carry around on its own. I usually had to shove it into my gym bag and it was cumbersome to fit into my everyday backpack.

 

This bag holds my glucose meter, test strips, lancet device, an extra infusion set, insulin cartridge, syringes, bottle of insulin, bandages, fruit snacks, my inhaler (which might be expired..), and tissues.

 

 

 

 

I let the wonderful folks at Sugar Medical know what I typically carried and how I was currently organizing my supplies. They suggested I try an insulated sling bag and a universal supply case.

First thoughts- color! Most standard meter cases come in black which is great if you don’t love color like I do! And a bright colored bag is definitely easier to locate in the abyss (also known as my backpack).

Setting up my new case was a breeze- it has a little Velcro strip (that is quite strong!) to apply to your meter so you can attach it to the case.

The loops are perfect to hold my strips, lancet device, and the tissues I use to wipe my finger on after testing. I still have an extra loop in the middle which would have been perfect for when I was on Victoza injections too.

 

The case holds everything in place so testing on the go is easy- I can test while driving (not recommended) and at the gym without having supplies falling out of my lap.

The zippered mesh compartment on the inside holds my insulin vial, extra lancets in case I get the urge to change mine (like next year).

Once you zip up the case, you’ll find a large pocket on the front with a Velcro closure. I use this pocket to store my fruit snacks (low supplies).

And the sling bag? Equally perfect! I keep my backup pump supplies in it, along with a small bottle of juice. When I’m going from my day backpack to the gym, I simply pull out my meter case and slide it into my sling bag. The bag is roomy enough for my wallet, gym gloves, and headphones too. When the weather warms up, I’m excited to put a cold pack in, since it’s insulated, and take my bag everywhere.

Bottom line:

The case has made having what I need easy to find and portable. If I’m running to a meeting, I can grab my meter case and know that I have testing and low supplies with me. I can also zip my phone inside and use it for errands when I don’t need backup pump supplies. It has given me a bit more freedom in my life with diabetes.

If you’d like to purchase your own Sugar Medical case, please use my coupon code “ATJAX15” to save 15% on one order (expires 4/14/2018 so get your order in soon!). They have plenty of other styles and colors to choose from as well. And if you’d like to read another review about Sugar Medical’s products, head on over to my friend Rick’s site, RADiabetes!

Type 1 Diabetes

Type 1 Diabetes Appointments: Then and Now

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Today I had my regular 3 month check-up with my endocrinologist. As I waited for the doctor to come in, I thought about how much these endocrinologist appointments have changed over the past (almost) twenty nine years for me.

The A1c

Today I had my finger pricked (ouch, why I can’t use my own lancet device is stupid) and within 5 minutes had my A1c result. And a quick, woohoo for my 6.6! Despite a pretty painful few weeks from RA and having crazy blood sugars from discontinuing Victoza, I was pleasantly surprised to see this number!

Back in the old days (like the 90s), you had your blood drawn and then a week later found out what your A1c was. At that point, I’d already seen my endocrinologist, made some tweaks from my logbook data. So the A1c wasn’t particularly mind blowing to me personally. My Dad though? It was everything (a fellow Type 1).

When I was a kid, I was constantly compared to what I “should be”. Now, I’m happy that my endo shows me the result, says “great job” and then looks at my data and we make changes from there.

The Logbook

Yes, I’m dating myself, but I’m only 38! Back when I was a kid with type 1, every insulin dose, every blood sugar, had to be written down in a tiny notebook, aka the logbook. During my teenage years, I wasn’t the greatest at documenting everything. But I was great at quickly filling in made-up numbers before we left for my endo appointment. Lucky for me (now, not then), my doctor would point out that I used too many even numbers and to work on having more of a variety the next time I filled it out. Oops.

I think that’s the only time I’ve been in trouble from diabetes. I can recall a nice lecture in our living room from my Dad. I’m thankful for my endo calling me out and my Dad enforcing the logbook- my teenage years could have really caused some damage to my body if they hadn’t been looking out for me.

Bloodwork

From 9 to 16 years old, I had the standard A1c and kidney function labs done every few months.

When I was 17, I switched to an adult endo and she insisted on testing my thyroid function in addition to my A1c and kidney function. That proved to be invaluable as I was diagnosed with Hashimoto’s Disease shortly thereafter.

When I was in my 20s, another endo insisted on adding Celiac panel testing to my regular labs as the relationship between celiac disease and type 1 diabetes was a hot topic. Thankfully, I tested negative (and have been tested a few other times since).

Now, at the ripe old age of 38, I had Addison’s Disease labwork added to my list today. Although my endocrinologist agrees with my cardiologist’s diagnosis of dysautonomia, and specifically POTS, she also said there is a link between Addison’s and type 1 and she thinks it’s worth a lab draw.

Discussing Medications

Insulin is a given- and that’s always the main discussion topic. But now that I’m older and have had type 1 for almost 30 years, we often discuss adding some additional medications to help my organs stay as healthy as they can be despite the havoc diabetes can cause.

A few years ago we added Lisinopril to help protect my kidneys. I’m on a relatively low dose and don’t experience any side effects.

Today we discussed statins. Although my cholesterol is in the good range, my heart has still had to deal with diabetes for a long time. There’s some evidence that shows taking statins before age 40 could help reduce the risk of cardiovascular disease. We decided to see how my cholesterol looks at my next visit, see the results of my upcoming echo cardiogram (routine), and go from there.

I’d love to hear if you’ve had similar changes in your doctor’s visits over the years!

Hope Rheumatoid Arthritis Type 1 Diabetes

Welcome 2018!

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Hi again! It’s been awhile since I’ve posted and like a lot of bloggers out there, I’m going to promise you that I’ll be writing much more in 2018. Writing helps me tremendously, I feel better when I share and feeling better is always the goal!

When I initially reflected on 2017, the word “okay” came to mind. But as I dove in, I realized that 2017 was much more than ok. Sure there was pain, there were tears, there were doubts, but I’m going to focus on the good things:

Advocacy

  • Attending the HealtheVoices conference for the second time was incredible. I was able to meet even more amazing advocates and because of those connections, I was able to work on great projects like fighting the Obamacare repeal and helping Hurricane victims get the medical supplies they desperately needed.
  • I was invited to Pfizer’s ReAl Talk Summit where patient advocates and bloggers like myself, got to help shape Arthritis.com to help Rheumatoid Arthritis patients get the information they need on a variety of topics, not just their disease.
  • Until my health got in the way, I had the privilege of being a Community Manager and writer for CreakyJoints. I learned so much about how to manage my own site better and I was able to interact with some amazing writers- I really suggest you visit CJ and take a look yourself.

2018 already holds a lot of awesome advocacy opportunities- you’ll see me as an advisory board member for the 2018 HealtheVoices conference and as a steering committee member for the Autoimmune Summit in March.

Rheumatoid Arthritis

  • I started seeing a new rheumatologist in 2017 (mine retired at the end of 2016) and she has been a wonderful fit for me. She values my research, loves to hear about my advocacy, and lectures me on getting enough rest (I really need someone to force rest on me and my body!).
  • By the end of 2016, Simponia Aria was added to the list of biologics that had failed me. I tried adding Plaquenil in March and quickly found out that I am incredibly allergic to it. The positive? I won’t have to wonder if it would have helped me, I definitely know it can’t!
  • Knee Surgery- I’ve posted a lot about this so I’ll spare you the details but this major surgery has given me so much pain relief and freedom. Despite the hard recovery, I don’t regret having it done. My surgeon is hopeful that I’ll get a year or many years before having to have the knee replaced.
  • In July I started Rituxan. My rheumatologist told me that although most people get 6-9 months of relief, she thought I should be prepared to get infusions every 4 months based on the severity of my disease. Rituxan has been wonderful to me. My husband has commented that he sees a “pep in my step” which is something I never would have described myself as having. I didn’t realize how much Rituxan was helping until I hit that 4 month mark and started flaring. I’ve just finished up my 2 infusions and hope that early in 2018 they’ve kicked in and my year will be off to a great start!

Type 1 Diabetes

  • This year I also started seeing a new endocrinologist (my previous left right around the same time as my rheumatologist). Even though I happened upon this doctor by chance, she’s perfect for me. Very tech savvy, considers me an important part of all decision making.
  • I left behind my Medtronic 530G in favor of the Tandem T-Slim with Dexcom integration. I haven’t looked back. I love my new pump, love seeing my CGM data on my phone and watch.
  • I had an opportunity to test out the FreeStyle Libre courtesy of Abbott (blog post about my experience coming soon, I promise!).

POTS (Postural Orthostatic Tachycardia Syndrome)

  • This is a new diagnosis and you might wonder, why is this filed under the good things of 2017? For almost two years, I have struggled with dizziness and a racing heart when I stand. I tried to ignore it but over these past few months, the dizziness was so bad that I would see black spots, vomit instantly (like in the kitchen sink because I couldn’t make it more than a few feet). My heart rate would be 75 when I was sitting and shoot up to 130 just from standing.
  • Once the symptoms started impacting my quality of life (and scaring my husband), I finally called my PCP who sent me to a cardiologist. The good news is that despite Rheumatoid Arthritis and Type 1 Diabetes, my heart is great! The other good news is that even though my symptoms haven’t improved at all, I now have a name to what I’m fighting (POTS) and have an appointment to see a great specialist in March.
  • Although this condition is incredibly hard to manage, I’m hopeful that I’ll see some improvement in 2018. I also plan to write about my experiences as it’s been hard for me to find a lot of patient advocates/bloggers sharing their stories.

General Wellness

  • In October, I decided to get serious about my overall health. I’m happy to report that as of today, I’m down 28lbs and am starting to feel stronger than ever.
  • Losing weight has helped my sleep and has decreased the amount of pain meds I need to take. Now that I’ve seen results, I’m confident that I can keep going, no matter what comes at me.
  • I’m working on managing my diet as well and that’s a big part of my 2018 plan. All of my recent nausea has had me limit myself to only a few foods that I know won’t make my stomach feel worse. As a result, I’m going to work on slowly adding back in foods and seeing how my body reacts. Something I’ve wanted to do since my RA diagnosis.

I’d love to hear about your plans for 2018 and what you learned from 2017, please share in the comments!

Type 1 Diabetes

Fingersticks for everyone!

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My Continous Glucose Monitor (CGM) transmitter has died. It was only meant to last a year or two and we have been together for three and a half years. Medtronic is working with my doctor and insurance to replace it. In the meantime, I’m back to fingersticks all day, like some sort of caveman.

No big deal, right? Wrong. I have become so dependent on my CGM that I truly don’t know how to comfortably live with diabetes without it.

I have diagnosed anxiety that is typically managed pretty well with medication and mindfulness. Until my CGM stopped working. I found myself feeling so panicked throughout the day. Was my blood sugar plummeting? Was it rising? Did I take enough insulin to cover lunch? Did I take too much? Continue reading

Type 1 Diabetes

DKA

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My father was 68 years old when he passed a few days ago. He had Type One Diabetes for almost 60 years. Sixty years of urine test strips, insulin injections, fingerpricks. Sixty years of low blood sugars and high blood sugars.

This is a portion of his death certificate.

Three little letters that mean so much. D. K. A. And why was my father, a diabetic who for years had his A1C never higher than 5.8, in DKA? Because nursing homes and even hospitals don’t know anything about insulin dependent diabetes. His nursing home didn’t get his insulin from the hospital when he was transferred there. They had him wait a day to get it. A day. An entire 24 hours without insulin. And no one batted an eye. Not a doctor, not a nurse, not a medical assistant. No one.

This has to change. It has to change starting with educating the public, medical school, with each other. As diabetics we have a responsibility to explain our disease every chance we get. I owe it to my dad to try to make sure those  three little letters aren’t on another person’s death certificate.

Family Type 1 Diabetes

Diabetes is Scary

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This photo is of me and my dad (yes, it was the 80s). My dad has had Type One diabetes my whole life.

My early memories of diabetes weren’t good, they were scary. My dad would have low blood sugars a lot and often need assistance. An ambulance had to come to our house more than once. I can remember my dad biting his tongue so bad during a low that there was blood all over his bed.

I used to have nightmares about getting diabetes. My dad used to always tell me there was a “one in a million” chance of me getting it. In 1988, I won the Diabetes Lottery.

Over the years, I have watched diabetes own my father. He had a brief stint working from home when he had passed out from a low, at a PGA tournament. The department of motor vehicles considered it to be a seizure and briefly suspended his driving license. He later decided to work from home full time. That fueled his “diabetes OCD”- the need to eat the same things at the same time every day. He planned any outing around his meals and his diabetes. He could not and would not go off schedule. Dinner was at 6:30pm every single night of my childhood.  Continue reading

Rheumatoid Arthritis Type 1 Diabetes

It’s Not Pretty

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This is what I look like after:

  • Spending my commute screaming f*ck because the sciatic pain was at its worst
  • Trying to work all day with a fever
  • Being unable to get my blood sugar down because the pain is causing it to rise
  • Drinking a ridiculous amount of caffeine so I don’t fall asleep driving home later
  • Sitting on an ice pack all day because I can’t get my back to stop hurting
  • Getting ready to drive home with my sciatic nerve feeling like someone is stabbing me up and down my leg

Just living with Rheumatoid Arthritis and Type 1 Diabetes is hard enough but working full time and caring for a family is a battle a lot of patients, like me, fight every day.

I’d be disrespecting myself and my community if I only showed my “good” photos and didn’t share my struggles. So here I am. It isn’t pretty.

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Rheumatoid Arthritis Type 1 Diabetes

Perspective

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My first infusion was done in a small room with only two infusion chairs. Last week, was my second infusion of Simponi Aria and it was in the “main” infusion center. From what I could tell, most of the patients were fighting cancer.  

I thought to myself, “they are fighting a much harder battle than me, I’m just here for Rheumatoid Arthritis”. And then it hit me. Everyone’s battle, including mine, is important. Just because I’m injecting my small dose of chemotherapy at home and getting a biologic infusion, doesn’t mean that the infusion process is any less scary or intimidating for me. My disease will never be in remission. I have permanent damage to my joints and bones as a result of Rheumatoid Arthritis and no amount of chemotherapy is going to fix that. I could very likely be sitting in that infusion chair, every 8 weeks, for the rest of my life.

So I’m going to try to keep things in perspective. When I see someone cry or flinch while getting a flu shot, I’m going to try to remember that just because I have given myself shots for 28 years, not everyone else has. 

 

Type 1 Diabetes

Diabetes Label

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It’s hard not to feel like you’re failing at some point when living with Type 1 Diabetes. Whether it’s a missed bolus, high or low blood sugar, or just public stigma, diabetes can make you feel unsuccessful.

I logged into my hospital’s patient portal today and happened to notice this at the top of my report, from my latest endocrinologist appointment. 


Well controlled. Well controlled? Me? I have a 7.1 A1c. Do a quick search on google and you’ll find plenty of people who only think something starting with a “5” is good. 

A level of 7.1 equates to about a 157 blood sugar average. And, in my opinion, that’s not horrible! Not only do I deal with Type 1 Diabetes but Rheumatoid Arthritis as well. Pain, stress, inflammation, and a flurry of medications all mess with my blood sugar. Not to mention trying to maintain an acceptable blood sugar just dealing with LIFE.

So, well controlled? I will gladly accept that diabetes label.

Diabetes Blog Week Type 1 Diabetes

The Healthcare Experience

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Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!


Having multiple chronic diseases does involve a lot of doctors appointments. There are some overall healthcare items I’d like to change:

  • Communication. Especially between providers. And, especially, before my visit. It would be great if my endocrinologist read my rheumatologist’s visit note before my appointment. She would see that maybe I was having a rough month and that prednisone was on the horizon.
  • Fluidity. If I ask my endocrinologist about my trouble sleeping, she gives me some ideas but ultimately says that that issue falls under my PCP. Totally understandable. But maybe she could take the extra step to send a message to my PCP, letting her know that I needed some help. Save me a doctor’s visit and a copay.
  • Timing. My diseases aren’t just being managed from 9 to 5, Monday through Friday. Recently, my insulin pump decided to stop working. At 11pm on a Thursday night. My endocrinologist and Medtronic were easy to get in touch with but my insurance company? Nope. My endocrinologist called in a Lantus Rx, to my 24hr pharmacy, but it was delayed because my insurance initially rejected the claim. It wasn’t resolved until the next morning. Just because I wasn’t in the ER, doesn’t make my need for insulin any less important.