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Hope

Hitting the reset button for your body

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Today isn’t a Monday. It isn’t New Year’s Day. It isn’t even the first of a month. It’s Saturday, May 5th. Regardless of how insignificant today may be to make a change, I’m starting something new today. I’m hitting the reset button.

Over the past few years, I’ve tweaked with my diet and exercise. I was off gluten for awhile (and felt noticeably different), killed it at the gym. But no “plan” stuck with me.

I’ve realized that lately, I’ve been pushing and pushing my body to accomplish things despite it repeatedly telling me “no”. I’ve gone to the gym and boasted about my hour long workouts, only to not be able to move for two days after.

At a conference last weekend, my body repeatedly tried to tell me to slow down in the form of nausea and dizziness. I pushed on until my body had me hurrying up to my hotel room so I could vomit and lay down, mid session.

When I met with my rheumatologist this week, we discussed the recommendations my dysautonomia doctor had made in regards to POTS and Neurally Mediated Hypotension. She asked how fluid intake was (good, I’m at least very good with that!) and exercise.

I explained my frustration with going to the gym and not being able to function for a few days after. I couldn’t figure out how I was supposed to do an hour of exercise every day. She told me I needed to start over and that it was unacceptable for my body to feel so awful. She advised me to go to the gym, get on the recumbent (ughhhh) bike for 20 minutes and then leave.

Regardless of how good I feel, I have to stop as soon as my time is up. She said I can add on a bit over time, including resistance and strength training, but only after I see how I feel the next day or two.

I wasn’t sold on her idea but as I went for my Rituxan infusion, it started to consume my thoughts. As I pumped this nasty drug into my arm for hours, I thought about how much I am doing against my body. I am constantly pumping it full of drugs, like methotrexate and Rituxan. I eat basically whatever I want because it’s easy or I don’t want to put energy into preparing food. I push myself with the promise of “resting later”.

There are things I can’t change and I know my diagnoses aren’t going anywhere. I’m still going to have to work, raise teenagers, battle the cat for part of my bed to sleep in, and deal with traffic.

But. What if I can be a little more intentional with my body?

I can give it more quality food, the rest it is so desperately begging for, movement that is helpful not hurtful? Maybe will I feel a bit more at peace with my body and not at odds? And how will that peace come through in my interactions with the world around me?

So today, I’ve hit the reset button. I’m still my old self but with a few pending updates to install. This may take awhile.

Dysautonomia Rheumatoid Arthritis Type 1 Diabetes

Surviving a tilt table test with diabetes and rheumatoid arthritis

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Today I had the pleasure of experiencing a tilt table test. I did a lot of research beforehand on what the actual test entailed, asked others about their experience, etc. Going in, I felt pretty prepared but I walked away with some info to share:

Type 1 Diabetes

You have to fast beforehand which isn’t always the easiest thing to do with diabetes.

  • Make sure you check how early you have to fast- for me it was only 4hrs before the test which is a bit more manageable.
  • If you go low (like I did), apple juice should be your go to. It’s clear and does the trick quickly.
  • It should be ok to wear your pump/CGM. You may have to ask the nurse to check with the physician or someone else in charge as often their initial response is to have you remove it.
  • Be prepared for your blood sugar to respond to the stress this test will put on your body- the anticipation caused me to go low but the actual test made me go high.

Rheumatoid Arthritis

You will be standing in a locked position.

  • Be prepared for some pain during and after the test- the entire test can take 90mins and a lot of that time is standing with very little movement.
  • Bring pain meds to take as soon as you’re done as pain isn’t something they’re necessarily going to address in the cardiac recovery room. I didn’t have anything until I got home and at that point I was feeling awful.

Self care tips

  • Make sure your driver is present during the results portion of the test. It’s a lot of information to process after you’ve just passed out.
  • Wear comfortable shoes and pants as you’ll keep them on the entire time.
  • Take the remainder of the day off. As someone who was back at work right after surgery, you might not believe me, but you will feel horrible after this test. Use your afternoon to give your body the hydration and rest it needs after such a stressful event.
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!

Rheumatoid Arthritis Type 1 Diabetes

I am afraid of my body.

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My system (used here to reference my entire being- mind, body, and soul) is a mess. It’s as if my body and mind are two separate organisms who used to be friends but now barely utter a “hello” when they see each other.

I find myself constantly tiptoeing around, afraid to set off the bad temper my body has. I slowly get dressed, pulling on compression socks in slow motion as to not upset my already very sensitive leg muscles. I sleep in compression tights in hopes of not waking up in serious pain throughout the night.

I snack on pretzels all day long, starting early in the morning as I drive to work. I try to have something salty in my stomach in hopes that I won’t find myself vomiting, seemingly out of nowhere. I chug electrolyte enhanced water, even when I’m not thirsty at all, to try to appease my body and it’s abnormal sodium need.

My mind gets angry when my continuous glucose monitor beeps incessantly while I’m trying to sleep. My blood sugars are rising and falling without much warning lately.

The unpredictable nature of my body lately, especially the violent vomiting, has my mind feeling so many emotions. I’m fearful of the intense pain that I’ve been feeling lately. I’m nervous that I could vomit in the middle of the grocery store, without warning, especially since I just got quite ill at work and am still embarrassed. I’m frustrated that others take their good health for granted. I’m sad that this is the body I’ve been dealt with.

But I’m also proud. I’m proud that I am still working full time with additional advocacy work on the side. I’m proud that because of my illnesses, I’m raising two very empathetic children who understand that a lot of diseases are invisible. I’m proud that despite the pain and vomiting, I still make myself go to the gym a few days a week for a pretty intense workout. I’m proud that I’ve created this outlet to share my life so I can connect with others and show them that they are never alone in the battle with their own body.

Type 1 Diabetes

Hundreds of endo appointments

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I’ve had Type 1 Diabetes for 28 years. I see my endocrinologist about every 3 months, so I’ve had over a hundred appointments so far. And to be honest, today’s appointment was the first one I prepared for.

I know the drill- it used to be to bring in my logbook (which as a teen could have been completely made up at times) and get labs drawn, only to find out what my a1c was, a week later. Now it’s a finger stick in the office for an a1c result within minutes and surrendering my pump to a nurse so she can download pages and pages of data. It’s roughly the same thing, every time.

Today was different. Today I had a short list of items to discuss. When I pulled out my planner, my endocrinologist seemed excited to have a new challenge.

Item 1: A new pump and CGM

In a week, the warranty for my current pump and continuous glucose monitor expires. I’m currently on the MiniMed 530G. I was on a MiniMed pump for the first 8 years of my pumping career. I switched to an Omnipod and dexcom for a few years and then when back to MM when the 530G was released. Although the pod works great for a lot of people, for me, the tube pump provides more consistent insulin delivery. As much as I enjoyed the freedom of the pod, ultimately a tube pump is just better for me.

If you asked me a few months ago which pump I would switch to, I would have immediately said the MiniMed 670. The closed loop is exciting. When I took the time to think of what was important to me, I found that:

  • I want fresh, new technology that also looks current.
  • I want and need flexibility in my CGM site location. I have to use my MM CGM off label- I cannot get reliable results on my abdomen.
  • I want the option to view my CGM data where it’s convenient for me- my phone, a watch, on my pump.
  • I want my pump to be as discreet as possible. Not bulky.

For me this means exploring the T Slim from Tandem with Dexcom. This combo meets my needs better. The device is colorful and simple to update the software for. Dexcom sensors require much less taping than my current sensors, which means that when my Rheumatoid Arthritis is making it difficult for me to reach my back or behind my arm, I can more easily insert a sensor. Dexcom data can be viewed on the pump, on my phone, on a smart watch, and even sent to my husband.

Of course now I wait to see if my insurance is as excited to pay as I am to get started…

Item #2: Weight Loss

I go to the gym as often as my RA allows (usually at least 3 times a week). Like a lot of people with diabetes, I have fallen into the trap of eating roughly the same things as I know the carbs and how much insulin to take. But, unlike a lot of people with diabetes, I also have Rheumatoid Arthritis which can make diabetes Management a pain, literally.

Everything affects my blood sugar- pain, inflammation, lack of activity due to stiffness, nausea, etc. I’ve found that my insulin use has gone up as I often have pesky highs when I’m feeling awful and they aren’t easy to bring down. And with all of the extra insulin, my weight isn’t easy to bring down either.

I asked my endo about meds that would reduce my daily insulin intake which would in turn, help with weight loss.

First med we discussed was Afrezza. I have seen so many fellow diabetics using it with great results. But I quickly learned that those great results weren’t worth the risks for me. Since Afrezza is inhaled insulin, there’s concern for how this affects your lungs. Because Rheumatoid Arthritis caused me to develop asthma and with the risk of RA and lung damage, my endo and I quickly decided that this wasn’t worth the risk at all.

Next up was Invokanna. This drug causes you to basically urinate sugar instead of allowing your kidneys to reabsorb it (this article is a great resource for explaining these meds in better detail). This comes with a higher risk for infection, especially a UTI. Since I’m extremely infection prone (thanks again RA), I quickly eliminated this one as well.

Lastly, my endocrinologist mentioned Victoza. In short, Victoza is a daily injection that helps slow glucagon production, slow ingestion, and decrease appetite. Side effects? Nausea for the first few weeks. I can deal with doubling up my Zofran if I have to- much less scary than an added infection risk or potential lung problem.

So yay! we found a medication to try. But now, I get to wait again to see if my insurance will cover this off label use.

While I wait for my heath insurance to determine my fate, I’d really like to hear from you. What pump are you on and why do you love it? Have you tried adding any medication to your insulin only regimen. What happened if you did?

Rheumatoid Arthritis Type 1 Diabetes

#SAVE32MIL

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The Obamacare Repeal Reconciliation Act is projected to cause 32 million Americans to lose health coverage by 2020. We need an adequate replacement, not a repeal.

This Friday, starting at 12am EST, use #SAVE32MIL on Twitter, to share your story and why healthcare is important to you. This is a non-partisan event- every American's life is important, and each person deserves quality healthcare.

Join us for a special hour Friday evening (8pm EST), where we'll discuss how to contact your legislators and what to say to them. Be prepared to share your successes and tips in advocacy!

All of this leads up to Monday, July 24th, when you'll be fully prepared to contact your legislators and encourage them to replace not repeal.

Click here to join the Facebook event and be sure to invite as many people as possible!

We are powerful as individuals, but our voices together can really make an impact. Join the conversation on Twitter, using #SAVE32MIL, as often as you can on July 21st.

Favorite Things

PillDrill is a must for patients!

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“I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.” 

 

When I was offered the chance to have a PillDrill system sent to me to review, I had high hopes. Like many of you with a chronic illness or two, I take a lot of medications. Some are morning only, some have to be taken at night, and others are taken weekly or throughout the day as needed. I found myself jotting pain medications or antibiotics on post-it notes around the house. I tried to remember the last time I took a pain med by seeing if I happened to tweet about my pain earlier. There were days I’d start feeling strange at work and didn’t realize until I got home that night, that I hadn’t taken my morning medications.

In short, my system wasn’t working. All of that time and energy I spent trying to remember my prescriptions and jot down how I was feeling that day (to share at future doctor’s appointments) could have been spent on much better things.

Enter the PillDrill.

Continue reading

Knitting Rheumatoid Arthritis Type 1 Diabetes

Self Care

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This is a sponsored post for Self Care Catalysts. I have been compensated through the Chronic Illness Bloggers network. All opinions remain my own and I was in no way influenced by the company.

When I was diagnosed with Rheumatoid Arthritis, I couldn’t stop asking “why?”. Why did this happen to me? What did I do to cause this disease? What could I have done to prevent it? The truth is, there isn’t a reason. I know that. But four years ago, I needed something tangible to tie my diagnosis to. The year right before my diagnosis, I was busy. Busy with a husband and two young children. Busy working full time in a job that required me to work early in the morning and late into the night. It required weekends and events that had me on my feet for almost 24 hours. In between meetings I would rush home to say goodbye to my daughter as she was getting on the school bus or quickly help with homework. I was exhausted but I never stopped.

I look back on the few months leading to my diagnosis and realize my body was trying, trying so hard, to tell me to slow down. I didn’t listen. Eventually, my body just stopped. I literally could not walk. It took another serious diagnosis (I already have Type 1 Diabetes) to realize that I needed to take care of myself. And that’s where self care comes in.

When I first saw the term self care, I thought it had to be a certain something. It had to be an appointment and it had to cost time and money. Like a spa day. Sure it can be a day getting pampered but that doesn’t fit into my life or budget. Continue reading

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.
Diabetes Blog Week Rheumatoid Arthritis Type 1 Diabetes

Call me Diabetic but don’t call me Arthritic

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There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? 

keep-calm-i-am-a-diabetic

I have had Type 1 diabetes for 28 years. I am a diabetic. I am also the child of a diabetic. I’m a mother, a daughter, a wife, a blogger, a worker, a neighbor, a knitter, an exerciser. I’m also a person with children, a person with a blog, a person who goes to the gym, etc. I am a lot of things. And all of those things define me. And that’s ok.

I use “diabetic” and “person with diabetes” interchangeably. I’ll tell a physician that I’ve had diabetes for years but in the next breath I might say to someone in the waiting room “oh this is my pump, I’m a diabetic”. I wouldn’t think twice.

Ready for a curve ball? I also have Rheumatoid Arthritis and I think I would be pissed if someone referred to me as arthritic. Just typing that word bothers me. Sure my joints are arthritic but I’m not. I can’t really put my finger on why arthritic bothers me so much yet diabetic doesn’t. I have come to terms with diabetes- I have it, I’ve had it for a long time, and I’ll always have it. Sure my blood sugars can be wonky but in a weird way, I’m used to that. But things are different with RA. RA is painful, it’s debilitating. I would take diabetes over RA in a heartbeat, I wouldn’t need to think about it.

So maybe that is my issue. I have diabetes but it doesn’t have me, so the terms and language don’t bother me at all. But most days, I feel like Rheumatoid Arthritis has me. It controls me. It decides if I’m going to cry in pain on the way to work or if the ice pack strapped to my leg will be enough. And maybe, I need to come to terms with that.