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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.


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!

Favorite Things Hope Type 1 Diabetes

Only Human and Type 1 Diabetes

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I am a regular podcast listener. In fact, I love my podcasts and one of my favorites is Only Human. Today’s episode, The Robot Vacuum Ate My Pancreas, is worth every second of 33 minutes. Today’s topic is Type 1 Diabetes and features Dana Lewis (you can visit her on twitter here) and her artificial pancreas system.

There were two specific moments during this podcast that I felt the need to share this podcast with everyone I know. Hearing other Type 1 Diabetics, especially children and their parents, talk about how much their life has changed by using an artificial pancreas, brought me to tears. I cannot fathom being a parent of a child with Type 1 Diabetes- managing my own disease is difficult enough. Hearing a child’s little voice and then the voice of their parent, I could almost feel their relief coming through my car speakers.

My absolute favorite part of this show was when Kenny Malone compared keeping a car at exactly 70mph while driving, to keeping your blood sugar at the perfect number, was amazing. I have struggled for years with getting others to truly grasp the time and attention this disease demands from me. I think this explanation is going to help me tremendously in getting my disease a bit more understood.

Please take a listen (or read the transcript) and let me know your thoughts!


Rheumatoid Arthritis Type 1 Diabetes

It Must Be

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Growing up with Type 1 Diabetes, I was always aware of how I felt and if those feelings were due to my diabetes. Did I feel dizzy? Thirsty? Tired? Confused? These could all be easily attributed to a low or high blood sugar. Once diagnosed with Rheumatoid Arthritis, I added more physical feelings that I could attribute to my disease. Pain, stiffness, muscle aches, popping, cracking, etc. I am constantly putting those feelings into a bucket- the diabetes bucket and the RA bucket. Occasionally there is the “normal human” bucket where a cold, for example, might fall but even the normal bucket spills over into the disease buckets.


Being a parent to children who currently don’t have any major health issues when I do, can add a strong element of fear to my life. I question everything- “Didn’t he just go to the bathroom twenty minutes ago?” Must be diabetes. “Her knee keeps hurting, yet nothing happened to it.” Must be arthritis. “She keeps sleeping in on the weekend.” “His hands are really achy today.”

No, I don’t spend all of my time analyzing their every move or every sip of water they take. But these little thoughts pop into my head from time to time. Is there anything I can do to prevent one or both of them from developing an autoimmune disease? No. So why harp on it? Because I don’t want them to suffer. Of course I don’t want them to suffer having a disease, that’s obvious. But what I mean is that I don’t want them to suffer through waiting for a diagnosis. With Type 1, my parents were repeatedly told that I had a virus, to let it go. My father, a type 1 diabetic himself, eventually had enough and tested my blood sugar at home. I was immediately hospitalized. With Rheumatoid Arthritis, I spent months going to multiple doctors, telling them something was wrong, only to be told that I had tennis elbow and was favoring my joint. It took me not being able to walk anymore for someone to take me seriously and run a battery of tests. I don’t want my children, or anyone, to experience that fear, that unnecessary pain or stress on their body.

So if I can’t control who will get which disease, what can I do? I can advocate and educate. I can share my diagnosis stories, my disease symptoms, with anyone and everyone. I can share what I’ve been through and what I’ve learned with parents, doctors, friends, family, strangers. I can empower my own children to research their concerns and know that every question they have is important.

Rheumatoid Arthritis

Opiates give me time

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Yesterday, the Centers for Disease Control and Prevention released these guidelines in regards to prescription painkillers. The guidelines encourage physicians to only prescribe opiates to cancer patients, those that are terminally ill, or those in acute pain.

As a patient living with Chronic Pain from Rheumatoid Arthritis, I’m disappointed. The guidelines are intended to reduce addiction and death rates related to opioid use. I understand the risk of addiction and death but as a patient, what are the proposed solutions for me?

Here are the CDC’s Guidelines for Patients:

img_2661.jpgI’ll use myself as an example to address the options above:

  • I have seropositive Rheumatoid Arthritis- in short, there is no doubt about my diagnosis.
  • Imaging tests- multiple x-rays and MRIs show permanent damage to my elbows, knees, hands, and feet.
  • I honestly have not tried Cognitive behavioral therapy- I am open to it but would need to find someone who accepts my insurance.
  • Acetaminophen on its own doesn’t touch my pain, moderate doses of ibuprofen do help with pain during the day.
    • As a side note- I was taking 600-800mg of ibuprofen 3 times a day with pretty good results during the day but needing some extra relief in the evening (not to mention the burning in my stomach…)
      • I also have Type 1 Diabetes and finally asked my pain management doctor and endocrinologist if ibuprofen was an appropriate long term solution for me. Their answer? No. Why? Kidney disease. Ibuprofen puts additional stress on my kidneys. I still use it occasionally but not regularly.
  • I have gone to physical therapy multiple times- I’m currently going to work on my knee and hip pain. I exercise 6 days a week at the gym. I average 11,000 steps taken a day.
  • I take Cymbalta which helps with my anxiety and helps decrease my overall fibromyalgia pain.
  • I have had multiple steroid injections in my elbow, foot, and knee. As recent as last month.

I doubt anyone working on these guidelines for the CDC knows what it’s like to be up all night crying in pain. What it’s like to experience such intense pain that it makes you vomit. And then to try to go to work the next morning and care for your family, after being up all night in pain with no relief.

Here is what opiate medications help me do:

  • Be a present wife and mother. I’m not in bed all day. I’m not crying all night. I’m at my son’s basketball games and shopping with my daughter.
  • Work full-time. Sure I have to make accommodations for my illness, opioids don’t make everything perfect.
  • Keep my blood sugars in control. My blood sugar is, unfortunately, affected by much more than food. Pain and stress cause it to rise dramatically, so much so that my basal rates overnight are higher for when my pain is typically at its worst.
  • And most importantly- opiates let me have a good chunk of my life back. Time that would be spent suffering in pain. Time that is priceless to me.

How do opiates help you?

Type 1 Diabetes

Obligatory Venting Post

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Yesterday at work, I was speaking to a parent on the phone. The parent mentioned that his child was pre-diabetic and then proceeded to say “I’m sure you don’t know much about that”…hmm. I immediately told him that I was actually quite familiar with diabetes as I have had Type 1 diabetes for 25 years. His response floored me:

“Wait. You actually work?” Yes.
“Full time?” Yes. “You went to college too?” Yes.
“So you have diabetes and a job?” Yes.
“Wow. That’s not normal. I guess there’s hope.” Uhh..

Type 1 Diabetes

National Diabetes Month

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Every year, JDRF, the Juvenile Diabetes Research Foundation, offers a really neat opportunity. People without diabetes can register for a text campaign which will help them to understand a bit more about what life with Type 1 diabetes is like. (I’d love it if they actually had some sort of pill or device that would allow someone to feel low and high..the “feelings” of diabetes are hard to describe to someone who is generally pretty healthy- this campaign is a great start though). Click on the image to sign up. T1Dcarousel

And while you’re at it, consider starting a team for the JDRF Walk to Cure Diabetes. You’re more than welcome to join or donate to my team too! 🙂