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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?

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Rheumatoid Arthritis Type 1 Diabetes

Here’s your gift bag!

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My husband had dental surgery today. In addition to post op instructions, he received a gift bag. Yes, you read that correctly. A gift bag. I’ve had quite a few surgeries and other than some ace bandages and a pain medication script, I usually just end up with a bill.

The gift bag had things he would immediately need- gauze packs, instant cold pack. It also had a pen, a t-shirt, and a coupon for a free milkshake from Chick-fil-A. Whaaaaaat?! I didn’t have to run out to the store immediately to get him gauze, we had it. And a milkshake? That’s the perfect post op treat- you haven’t eaten in hours but need to get something in your system (my husband has actually taken me to get a milkshake after every one of my surgeries so we had a little laugh about that at the doctor’s office). And what about the t shirt? Yeah, I’m wearing that now- it has a clever slogan about losing your wisdom teeth. Regardless, it’s clean and comfy.

How cool would it be if after my knee surgery, I received a gift bag? With maybe a stress ball to squeeze the crap out of (or bite into) when my nerve block wears off or perhaps a whistle for calling my children to help me? And maybe one of those long grabber things so I could reach my lip balm after I drop it on the floor and can’t bend to reach it?

In all seriousness, what would be in your gift bag? And have you ever been lucky enough to receive one yourself?

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Rheumatoid Arthritis

The options are: sick or stiff?

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A little background on my RA journey- I was diagnosed in January of 2012, after several months of debilitating symptoms (like having to go down the stairs on my butt, not being able to straighten my arm).

My rheumatologist started me on methotrexate and after six months with no change, we added Humira.

Humira was amazing. I had so much energy, I could walk, and after almost a year, I could finally bend my arm. I am quite positive I was right on the cusp of remission.

Fast forward nine months. A seemingly harmless cough morphed into a nasty chest infection that took months to clear with various concoctions of antibiotics. I ended up with a permanent diagnosis of asthma.

Since my illness in 2013, I tried Orenica. I tried Enbrel. Nothing. I convinced my rheumatologist to please let me try Humira again. I did and instantly got a fungal infection, plus a sinus infection. I even had sinus surgery- desperate to get back what Humira once gave me. It was no use, I kept getting sick.

I moved on to Simponi Aria infusions in the fall of 2016 and gave them a solid nine months to work. Nothing.

It is now fall of 2017 and I’ve had my two loading doses of Rituxan. And guess what? Something! My fatigue got better right away, my stiffness is almost gone, and my pain is more manageable. But guess what?

As of today, I’m now sick for the second time in a month.

To say I’m discouraged would be a massive understatement. I have had Rheumatoid Arthritis for less than 6 years and I am already on my 5th biologic and just had my 5th surgery in June.

I feel that I have to pick between two evils: do I want to live in pain with limited mobility, while this disease attacks my organs? Or do I want to be able to bend my arm and walk down the stairs but I’ll be horribly ill and not strong enough to fight a serious infection?

In short, do I want to be stiff or sick?

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Rheumatoid Arthritis

The week I chose to live

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A few months ago I was invited to attend the ReAlTalk conference put on by Pfizer (they paid for my travel & time but that’s all, all opinions are mine). When I was invited, I knew that my heart and mind wanted to attend, but my body? That was another story.

I had and am still having a rough recovery from knee surgery and just daily life with Rheumatoid Arthritis. The thought of going to New York City was exciting yet terrifying. How much pain would I be in? Would my doctors even allow me to go? How would I travel with crutches?

Guess what? I went.

No, I didn’t through caution to the wind and say “forget you Arthritis”! Whether I like it or not, Arthritis always has a vote and if I ignore that, it will rig the election (hmm, let’s not talk about that). But I decided I would be as proactive as I could and use the tools I have- tons of KT tape, compression gear, my braces, ice, pain relief medications, and my crutches.

Between getting settled in my hotel room and our group dinner, I wore my compression socks, filled my ice bucket, and used the fantastic hotel pillows to elevate my legs. I drank a lot of water and made sure I had plenty of electrolyte replacement powder to add to my water bottle.

The next day, I opted to take the provided car to our meeting space (One World Trade, whaaaat?!) which was just a few blocks. I used instant ice packs during the meeting and accepted the offer of a footstool to keep my legs up. When returning to the hotel, I continued my RICE protocol (rest, ice, compression, elevation).

I didn’t always do as well as I could though. JFK is a gigantic airport (seriously, please learn from my experience). I knew this because I came through JFK for my flight in. I had a rough time making it from my gate to baggage claim on Tuesday so you would think I would. I thought I was prepared for Thursday. I wasn’t. I didn’t ask for a wheelchair. Why? I’m not really not sure. Getting to the end of the TSA line was rough and an agent actually lectured me about not getting a wheelchair. She was right. I spent a good 30 minutes standing with my crutches only to make it through security and have a LONG walk ahead of me to get to my gate. By the time I reached my gate, my ankles couldn’t be seen beneath the swelling, my hand ached from pushing through the crutch.

Back to my pride. Wheelchairs aren’t just sitting at the airport for show, they actually work and there are actual employees whose jobs are to push them. There is no reason I shouldn’t have asked for one and I’m disappointed that I didn’t. Please learn from me!

When my husband asked if I would go see Sturgill Simpson with him Friday night, I didn’t think about it, I chose to say yes. I found where the handicap parking was (that I didn’t even know existed) and spent the day doing the RICE thing. I had an amazing time and know how much it meant to my husband to have me with him.

Today, I’m not going to lie, I could be better, physically. But mentally, emotionally, I’m fulfilled. I’m happy. I worked, I traveled, I hugged, I cried, I laughed. I lived.

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Rheumatoid Arthritis

Progress Check

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As I’m nearing the 12 week post op mark (tomorrow!), I figured it would be a good time to share how things are going.

Quick background, I had pretty intensive knee surgery back on June 1st. I took off the day of my surgery and the day after but was back to work that following Monday, from home. I’ve been teleworking full time since.

I knew this surgery was going to have one heck of a recovery. My surgeon reminded me multiple times as did friends who had the same surgery as me. But just because I knew it would be long, didn’t mean I had fully accepted it.

Crutches for months with a full leg brace to keep it fun. I’m now down to one crutch and a smaller brace. And yesterday, I went back to the office for the first time! My surgeon is only permitting me to work two days in the office for the next few weeks. I argued this when I saw him at my last visit but he was adamant- I had to work my way back to my pre surgery activities and doing too much was going to increase my already bothersome swelling and increase my healing time.

And as much as it pains me to type this, he was right. Ugh. My work day itself wasn’t rough by any means but my knee didn’t care how easy I took things or how elevated I kept my leg all day. My swelling was crazy! My ankle was huge and my kneecap couldn’t be located amongst all of my fluid. And the pain. Whoa. It hurt.

Today I saw my physical therapist and I honestly didn’t want to go to my appointment. Before I went to work, I was moving up and down stairs with an ease I hadn’t had yet. My kneecap was actually in the shape of a kneecap! Barely any swelling and pretty easily managed pain. I had myself convinced that my work day had thrown my progress back weeks. Stairs were so hard and the swelling was still there.

I didn’t realize it but today’s PT visit was progress note day. I was super bummed out when I realized. My therapist checked the strength throughout my leg, measurements for range of motion, swelling, etc. She kept saying “great” as she measured but I assumed she was just being nice (she is SO nice by the way, I love her).

She noticed the expression on my face and asked what was wrong. I told her I felt that things were so bad and really didn’t want to know how bad my report was. She then proceeded to tell me that my range of motion was back to my post op numbers, my strength was awesome (aside from the dreaded quad lag), and my swelling wasn’t measuring bad at all. Whaaaat?!

That report was the exact reminder I needed that with a chronic illness, you can’t let one bad moment, one setback, determine the future. If I let every high blood sugar, every sharp pain, ruin my day, my week, I wouldn’t have any reason to keep pushing on.

So next time you find yourself in a rough spot, pause. This will pass. And the fight alone, is something you should be proud of. It takes one hell of a person to get up every day and battle a chronic illness.

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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.

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Rheumatoid Arthritis

Book Review: The Memory of Health

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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.

“The Memory of Health”, by Edie Summers, is a fascinating read. As someone who has multiple autoimmune diseases and has acquired fibromyalgia as a secondary illness to my Rheumatoid Arthritis, this book really speaks to me. I see it as a piece of work that I will continue to reference for years rather than a book that is read once, not to be picked up again.

Unique Formatting

It isn’t formatted in the typical sense- chapters of simple text, which really works for this book and its content. Edie includes her journal entries which give an interesting glimpse into the author’s life and struggles with chronic illness, from her perspective. I think a lot of patients can identify with keeping a journal but I think we can also learn from Edie, that it’s important to look back at these entries and to consider sharing them. The book also includes the author’s poetry which is a welcome addition to see how ones illness and creativity come together. The journal entries and poetry are accompanied by beautiful images as well. Diet information is dispersed as well- why eating greens, avoiding meat, etc.

The way Edie uses different formats and references different topics thoughout the piece, makes this book feel like it’s giving you more than someone’s story, it’s giving you helpful information that you can use in your own healing health journey.

“Tell your story. Release your soul…”

One of my favorite themes that repeats itself through the book, is how important it is to tell your story. This is so incredibly important to me, as it should be to you. Edie shares that this book gave her a forum to share her stories whereas she had previously felt scared or that she didn’t have anyone she could share with that would understand where she was coming from.

Edie writes that the stories we tell ourselves are often different than the stories our bodies are telling us. She tells us that the story our body is telling us, is the story we need to listen to especially if you are trying to heal. We can’t see where we’ve come from if we haven’t documented every moment of the story.

The Real World is Impacting your Health

This was a really interesting section of the book for me- it covered September 11th, Agent Orange, chemical injuries, Mesothelioma, Veterans, environmental illnesses, and fragrances and how all of these chemicals in our environment are affecting our health.

Popping a pill isn’t always the answer

This section was also a good call to action for patients. A lot of people choose to self medicate before looking at other ways of managing a condition- whether it’s through lifestyle changes or nutrition. It’s important to me to have a holistic approach to my diseases- yes, medicine is absolutely required for me. I’ve also learned that some foods make my symptoms better and some make it much worse. Rest is incredibly important- and yes, it doesn’t come easy but it needs to be a priority. And, as the author points out, it’s important to weigh side effects before staring or continuing a medication. Make sure you do your own research and don’t just blindly take a pill.

If you’d like to check out some additional reviews of “The Memory of Health” please visit Amazon. But, if you’re interested in purchasing a copy for yourself, click here to purchase it at a 40% discount!

 

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Surgery Necessities

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If you’ve been following me on social media, you have seen me talk about my knee surgery a lot. On June 1st, 2017 I had a pretty invasive surgery on my knee that I knew would involve at least 2 months on crutches, a brace for most of the summer, and a hard recovery. I shared in this post, how I was preparing my life for surgery. I’ve learned over the past few weeks that in addition to preparing your job, your home, etc for surgery, there are things that are really helpful to have on hand. Don’t be like me and learn as you go (and place Amazon Prime orders almost every day)! And please, tell me what you would include as I would love to make this as comprehensive of a list as possible.

Amazon Prime

Speaking of Amazon Prime this service has been an absolute lifesaver for me post-op. I did an Amazon Prime 30-Day Free Trial which was great for me so I could get the things I needed right away, sometimes the same day, if not the next. In addition to getting some of the items you’ll see below, I ordered cat food, litter, shampoo, vitamins… This trial is something I’m probably going to continue or look into having items shipped from Target. I spend a lot of my precious energy going to Target every weekend to stock up on non-perishables. Sometimes that big Target trip is all I can accomplish without having to rest the remainder of the day. When I’m fully recovered, I’m definitely going to look into what I can have shipped to my door for a similar price.

Gloves

Yes, it’s summer here in Baltimore and yes, I’m saying that gloves are a mandatory item to have if you’re going to be on crutches full-time like me. I had ordered these awesome gloves from G-Loves prior to surgery because I was having so much trouble at the gym. My hands were in too much pain to hold on to weight training equipment. These gloves gave me the protection and padding I needed to get my workouts back on track with minimal pain.

I decided to try them with my crutches and they were awesome! I wear them all the time and haven’t had any wrist or hand pain from my crutches which is a big deal since my Rheumatoid Arthritis has been flaring. You’ll also see my Wonder Woman wrist wraps in the photo which would be great if you don’t need full hand support and they’re only $12!

 

Bolster Pillow

For the first week post-op, my sleep and swelling was awful. I had a tower of pillows that I used to elevate my knee and that tower wasn’t the best. I spent the whole night trying so hard not to move, so my tower wouldn’t fall down. I had my family haul pillows up and down the stairs, depending on which room I was sitting in. I went to physical therapy and my therapist had me rest my leg on a bolster while she iced my knee. I fell asleep instantly. She told me to look on online, that the products wouldn’t be a as sturdy (or as expensive), but that I could probably find a good one. I’ve learned from others that some orthopedic surgeons prescribe these prior to surgery and that they couldn’t believe I was trying to recover without one.

Here’s the one that I ordered- Restorology Elevating Leg Rest Pillow Memory Foam Leg Rest Pillow
I’d encourage you to read reviews and make sure the pillow will stay firm and check the measurements to make sure it’s high enough for your ideal elevation.

 

Compression Socks

Prior to surgery, I owned compression socks. Post surgery, I realized that those socks were enough for mild Rheumatoid Arthritis swelling but were no match for post op swelling. I ended up with 3cm of fluid in my ankle and was in a lot of pain as a result. I highly encourage you to have quality compression socks on hand- they really make a difference in recovery.

These socks, PRO Compression: Marathon Compression Socks, are the brand I ended up buying because they come in so many cool colors and patterns! I’m a sucker for fun, colorful socks anyway!

 

Your Pride

All of these items were extremely helpful but there is one thing that you actually don’t need when recovering. But do you know what you don’t need? Your pride. Getting comfortable with asking others to help was hard for me but necessary- I can’t drive myself anywhere, I can’t even cook yet. Admit when you’re hurting, admit when you just can’t do something. I can’t tell you how much better recovery will be if you put yourself first.

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Breathing easy with ImmunizeLABS

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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.

 

Let’s start with a little background on my…nose.

My sinus infections got so bad that my rheumatologist told me the only way I could continue using Humira was to have sinus surgery. So, I did. I will spare you most of the details but I was awake for the procedure, it was extremely painful and uncomfortable, and they were unable to fully get into my left sinus because well, I couldn’t take the torture anymore Continue reading

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Favorite Things Rheumatoid Arthritis

Review: TechCare TENS Unit, a must have for chronic pain!

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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.

I have a lot of products that I’ve acquired in my battle against the pain Rheumatoid Arthritis brings. Lotions, patches, creams, pills, compression braces for almost every joint in my body, and a TENS machine. Some work great, others not so much. Some were planned purchases, others acquired out of desperation (when you’re at the grocery store and your body somehow ends up in the pain relief aisle and you are looking up and down because there has to be something new).

When the opportunity to try and review the  TechCare TENS massager came up, I jumped at the chance. I already own a TENS machine- I’ve had it for almost five years. Initially it was great but as my disease progressed and my pain increased, the machine couldn’t keep up. I was maxing out intensity and not getting much relief. My physical therapist tried to order me a new one yet my insurance decided that even though I lived in Maryland and my insurance policy was Maryland based, it would only be covered if I lived in Pennsylvania. Go figure.

I’m now happy that I couldn’t get a machine through my insurance because I probably wouldn’t have tried the TENS from TechCare. The TENS unit that I absolutely adore and use daily. The TENS unit that provides me with immediate, intense relief.

So why do I love this unit? Let me count the ways:

  1. It’s rechargeable. Ahh, no batteries! And the charge lasts for multiple uses and recharges quickly.
  2. Intensity. Whoa. Going from my run of the mill TENS unit (at a comparable price as well) to this has been amazing. I have yet to use the intensity above 60% and that’s with knee pain that requires surgery this week.
  3. Can use 4 electrodes at the same time. This is awesome. I can have one set programmed to work on my extremely painful knee and have the other set massaging my calf muscle which tightens up from pain.
  4. Six massage modes- tapping, acupuncture, deep tissue, foot, cupping, or a combination.
  5. Time- my previous TENS only allowed 20 minute treatments. This allows you to dial up to 60 minutes and keep adding time as you wish.

Here’s what is included in the box:

1 controller: this unit is lightweight, painless to operate (RA has not been kind to my hands)

3 pairs of electrodes: small oval shape, medium oval, and larger rectangle; the multiple sizes are great- small ones work well on my elbow or wrist whereas the large rectangles are perfect for my legs

2 electrode cables: this enables you to use 2 sets (4 pads) at once

1 carrying bag: dark blue, drawstring, and everything, including the charger, fits inside

1 usb charger with wall adapter: easy to charge whether it’s via your computer or a regular outlet

1 electrode pad and wire holder: these are great and my only complaint would be that the kit included a total of 3; I tend to use all 3 sets of pads and have kept the plastic sheets they came with to stick the pads on when not in use

1 user manual: this leaves a bit to be desired- although it explains how to use and care for the product, it doesn’t explain the different modes in detail

1 treatment points chart: I honestly haven’t used this- it looks very similar to the charts you would see in an acupuncturist’s office; I tend to just place the pads where I’m having pain

The bottom line:

This TENS unit from TechCare is awesome, worth its low price, and a definite must have for patients with chronic pain. Interested in purchasing one of these TENS units for yourself? Check them out on Amazon:

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