Monthly Archives: August 2017

Arthritis on a Diabetes Blog

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When it comes to living with both Type 1 diabetes and arthritis, I don’t experience the amount of pain and disability that burdens some of my favorite people in the DOC. Rick Phillips who deals with rheumatoid arthritis and ankylosing spondylitis shared his story on my blog a couple of years ago. Rick tirelessly advocates for people with diabetes, but he often admits that arthritis negatively impacts his life much more than diabetes. Molly Schreiber has had Type 1 diabetes for 28 years. Her rheumatoid arthritis is a formidable opponent and she deals with the worst that RA can dish out. In general I am doing okay when it comes to living with arthritis. Except when I’m not….

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I am good at diabetes.

I am bad at arthritis.

I have had a tough summer. Although I was diagnosed diagnosed with inflammatory spondyloarthropathy over 10 years ago, my problems are peripheral. My hands hurt and my thumb joints are shot. In May I woke up with horrible heel and foot pain which continues to get worse despite following doctor’s orders.

I don’t write about arthritis very often because I am a diabetes blogger. Type 1 diabetes is a constant in my life and I do little without taking diabetes into account. After 40+ years of T1, I have no major D-complications. At the same time diabetes is a “needy condition” that requires constant affirmation and is entrenched in my psyche. More than once I have mentioned that I deal with other inflammatory and autoimmune conditions in addition to diabetes. I once wrote about a skin problem called annulare granuloma and mentioned that I felt helpless in dealing with it because “When you have Type 1 diabetes, you get used to the idea that WHAT I DO MAKES A DIFFERENCE in my health.” I’ve never bothered writing about hypothyroidism because it goes hand-in-hand with T1 diabetes. Mine was discovered through a routine blood test 21 years ago. I’ve never struggled with symptoms and my Synthroid-generic dose is the same as prescribed in 1996.

Arthritis. This is the thing that I’ve not written about and it is the health problem that most threatens my Pollyanna “Life is great!” philosophy.

I think that some of the personality traits that make me “good” at diabetes make me bad at arthritis. Diabetes loves people who overdo things and power through when you don’t feel great. Diabetes thrives on doing the same thing over and over again. Arthritis does not reward overuse of my body and I know that I would feel better if I didn’t sync as many steps on my Fitbit. (Actually I put my Fitbit in the drawer a few weeks ago because I need to rest.) I know that I would feel better if I gave up playing golf. I quit tennis a dozen years ago and still feel sad about that. I don’t know about hiking, but I suspect that I would do better with fewer mountains and more walks around the block.

It all comes down to pain.

Unfortunately sitting at home doing nothing is worse than pain and diabetes is a bear when your body is glued to a chair. I have always been active and I attribute my relatively good health to exercise. Blood sugars are better with movement and I believe that exercise helps ward off D-complications such as heart disease and neuropathy. Transitioning to a couch potato life because of sore feet and swollen fingers doesn’t seem like an optimal life strategy to me.

But exercise currently brings me pain.

I am strong but pain makes me sad.

My primary arthritis diagnosis is inflammatory spondyloarthropathy and it is a type of arthritis where many people feel better moving rather than resting. It is a type of arthritis that fits my “can’t stand to sit down” personality. But my hands and feet are diagnosed as osteoarthritis. I’m struggling with achilles tendonosis, heel pain, and elbow tendonitis. Overuse “old people” conditions.

Back to diabetes. What happens to my blood sugars when I am not active? Mostly they get worse. But I can take more insulin and then they are OK. But I gain weight and my insulin sensitivity goes to h*ll.

I am a self-manager of my diabetes and my endocrinologist is totally mostly on board with that. Diabetes usually does best when you manage it in the moment (AKA Sugar Surfing) and my Dexcom G5 protects me from most of the submarine lows that drive my endo crazy. My rheumatologist has never gone ballistic at my decision-making, but he occasionally looks askance when I arrive at an appointment and say that I reduced the dosage of one medication and refused to take another. At the same time he is older than I am and still plays tennis. He goads me to get back to the courts and suggests that I wear an arm strap to help with elbow tendonitis and use more of the topical Diclofenac gel to ease pain. More than any of my other doctors he understands how my medical issues are woven together in a spiderweb of autoimmune and inflammatory conditions.

I am an uber-educated diabetes patient. I understand my disease and voraciously read diabetes research articles, websites, blogs, and message boards. I am an active participant in the DOC and credit my fellow PWD’s for most of my knowledge and activism. I arrive at my endocrinology appointments with printouts of BG statistics and always have a list of pertinent questions.

I am less capable when it comes to my arthritis. To tell you the truth, I am not completely sure of my diagnosis. I do not have rheumatoid arthritis (RA) and once you don’t have that, it can be hard to find a niche for your condition. My medical records reflect terms such as inflammatory spodyloarthropathy, inflammatory polyarthritis, and osteoarthritis.

When I look at the future, I am much more afraid of physical limitations due to arthritis than I am of diabetes. I don’t worry about diabetes complications and have never experienced diabetes burnout for more than five minutes. But what will I do if walking is unbearably painful, elbow pain blocks me from playing golf and carrying my grandchildren, and hand pain rules out opening a jar?

I am good at diabetes.

Unfortunately arthritis scares the bejesus out of me.

Pain is a formidable opponent.

Pain.

* The image for the pain measurement scale was purchased from shutterstock.com.

Medicare and CGM Coverage: Swirling Emotions

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If you’ve been following the saga of Medicare coverage for the Dexcom G5 CGM, you know that Medicare beneficiaries will be forced to use the Dexcom receiver while being absolutely forbidden from using smartphones and the G5 and Follow apps. Coding and Coverage information released by Noridian Medicare in March 2017 clearly states this Medicare policy:

“Coverage of the CGM system supply allowance is limited to those therapeutic CGM systems where the beneficiary ONLY uses a receiver classified as DME to display glucose data.  If a beneficiary uses a non-DME device (smart phone, tablet, etc.) as the display device, either separately or in combination with a receiver classified as DME, the supply allowance is non-covered by Medicare.”

Few people in the diabetes community think that this makes sense, but for now it is the rule. Most of us on Medicare are grateful for the thousands of dollars we will save annually by having our Dexcom G5’s reimbursed, but emotions are swirling. JOY for coverage. ANGER at the restrictions. ANTICIPATION that sensors will be shipped soon. DISGUST that seniors are being treated differently. FEAR that no longer can our caretakers track our numbers in real time. SADNESS that we are losing access to our phones and watches. TRUST that this policy will change.

Lately I have been waking up in the middle of the night and stewing about being forced to abandon my smartphone and Apple Watch as Dexcom receivers. I worry about whether I will be able to integrate my G5 into my t:slim X2 insulin pump once the the Tandem software is approved. In the light of day I try to sort through my feelings knowing that I shouldn’t lose sleep over this. Mostly I feel frustration because it is a stupid ruling that I have little recourse to challenge. There is sadness because I really like my having CGM number on my watch. There is the sense of loss taking away something that I once had. And not to be ignored is the spoiled-child syndrome that “I want what I want when I want it!” and it’s unfair that others have it and I can’t.

For the most part anger about this situation is not one of my emotions, but others are frustrated, furious, and ready to do battle. A couple of quotes from Facebook:

“This is a ridiculous and ageist policy and I have said it many times. It’s not right.”

“I find it abhorrent that Dexcom G5 is MEANT to be used with smart technology and ANYONE not on MEDICARE has this option.”

“There is no way I can sign that form. It’s aggressive and hostile and incredibly ageist.”

Another emotion I do not have is fear. I currently neither use the Share app nor need someone alerted to my highs and lows. But others are dependent on a caretaker monitoring their BG levels and their safety is jeopardized with the denial of cell phone use.  Some Medicare recipients have disabilities such as low vision that make the larger screens and adaptability features of smartphones a better choice than the small screen of a Dexcom receiver.

“My T1D husband has a traumatic brain injury. So it is invaluable to me, his 24/7 caregiver for 3 1/2 years to be able to use the share/follow app.”

“Share has saved my life a couple of times on the G4 when I was mowing grass and didn’t hear the Dexcom alarm, but I did hear my phone when my wife called.”

“I don’t feel my Lows and my guy gets the alarm on his phone….This is a *safety issue* in my opinion. If we were totally able to feel things and get through without the chance of conking out we wouldn’t even need the darn CGM.”

“I have retinopathy of prematurity and have always had bad vision. Seeing my Dexcom readings on the iPhone is much easier than on a small receiver.”

My Thoughts and Things to Remember:

When my reasonable brain takes control, I know that I will survive using my Dexcom receiver. That is all I had for the first seven years of my nine years using a CGM.

I don’t have medical reasons that my iPhone and Apple Watch are better than my receiver. In fact I prefer dismissing alerts on the receiver because I can just push the button and not even look at the number! BTW that is a bad thing…. On the phone, I need to scan my fingerprint, tap on the alert, and go to the Dex app to dismiss it. I will miss automatic syncing of my G5 numbers to Dexcom Clarity, Tidepool, mySugr, and other apps, but I will survive.

My blog was started in the spring of 2013 and quickly became known for advocacy for Medicare Coverage of CGM’s. If at any point we had been offered the possibility of CGM reimbursement contingent on no smartphone use, we would have jumped at the chance. What we’ve got now is not perfect but it is thousands of dollars per year better than nothing.

Right now I think a lot of my stress comes from just not knowing what is going on. Through the early months of working out the logistics of Medicare, Dexcom did not do a good job of communicating with seniors. Some people were getting email updates. Others of us called Dexcom numerous times to be put on “The List” and never received any information. Seniors are still being told different things by different representatives from Dexcom, DME suppliers, pump companies, and medical professionals. Fortunately there is now some information on the Dexcom website but it does not answer all of my questions. I will definitely have an easier time coping once I know the rules of the game along with hardware and software modifications.

For the most part I am resigned to the Medicare restrictions and am working to accept them. In the short run I think we need to get Medicare reimbursement established before fighting the smartphone ban. Others disagree with me and are making calls, writing letters, starting petitions, and even hiring lawyers. And that is good because although patience is sometimes the best strategy, other times anger and in-your-face advocacy are the only way to force change.

Right now I know that whatever the policy ends up being, I will adapt. I haven’t used a receiver in years, but I’ll get used to it again. I can’t live in fighting mode all of the time and right now need to find acceptance. Although I know that I will eventually take my place on the battlefield fighting Medicare CGM policies, at the moment I am choosing to let things take their course and trust that Dexcom and JDRF will get this changed. At the same time I am cheering on those actively opposing Medicare. One online friend sums up my views perfectly:

“A year or two ago we were all writing letters to our Congressmen to get on board with a bill to have Medicare pay for the Dexcom. Now that is is approved, I’ve decided to let go of any anger and resentment (never does a diabetic good anyway) and am thankful for the approval and the fact that I won’t be paying out of pocket anymore, despite the absurdity of Medicare’s restrictions. However, I will still work in any way I can to change those restrictions if possible.”

Another senior stated it even more succinctly:

“It is what it is. You want Dexcom through Medicare? You sign the form.”

Amen.

 

Note: This blogpost only addresses the smartphone ban for Medicare coverage of the Dexcom G5. There are other problematic policies such as only 2 test strips per day being provided to CGM users. Those issues are in the wait-and-see category and worthy of discussion another time.

My Review of the Tandem t:case

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On the surface it seems that designing a case for an insulin pump should be an easy task. The new t:case for Tandem t:slim pumps demonstrates that it is actually more complicated than that and that it might be impossible to design one case that will make everyone happy.

Two weeks ago the news spread like wildfire around the Tandem community that we could finally order the long-awaited t:case. A limited selection of colors was offered at that time, but the full spectrum (Black, Blue, Olive Fatigue, Pink, Purple, and Turquoise) is now available on Amazon. Some colors are in stock with others back-ordered until August 5. The Tandem online store continues to show most colors as “Coming Soon” but keep checking. The introductory price of $19.95 is guaranteed until August 31 after which the price may increase to $24.95.

The previous t:clip case was available in fun mix-and-match colors. It looked great, but had major problems with a top heavy design and the tendency to fall off user waistbands. The clip was too bulky for pocket use although some women liked that it was easy to attach the pump to their bras. Frequent breakages and replacements were common. I personally hated this case. Some users liked the t:slider case and I used the removable part of that case in my pocket.

The t:slider case has not been available through the Tandem online store for many months and the remaining stock of t:clip cases shows availability only in Flash Green and Sunset Orange. Leatherette cases are still offered and include the t:flip, the t:holster, and the t:wallet.

One thing I like about Tandem is the importance of design. The t:slim is a sleek and modern pump and I don’t think that Tandem would be satisfied with a case that wasn’t equally attractive. I also think that after the track record of the flawed t:clip case that it was important to “get it right” this time.

So did they get it right?

Yes and no.

The Yes:

The case is made out of what seems to be a very strong plastic and there is no flimsy clip or hinge to break. I think that the case will be durable and provide excellent protection for my pump.

The cutouts make a lot of sense and allow the user to charge the pump and change cartridges without removing the case. (That is good because it is not easy to remove the pump from the case.) My photo below shows a view of the back of the case with the many cut-outs.

The removable clip allows the pump to be worn in a vertical or horizontal orientation. For those  who carry the pump in their pocket, the clip can easily be removed. However, it is so low profile that you won’t be bothered by just leaving it on. The clip is made of stainless steel and seems unlikely to break or bend.

The No:

In my opinion Tandem made a mistake in how the clip attaches for horizontal wear. Those who wear the pump horizontally usually do not want to remove the pump from their waistband to see the screen or program pump functions. Therefore it makes sense for the pump to be oriented upside down so that when it is lifted up it is right side up for the viewer. The t:case orients the pump so that it is upside down when the user lifts it up. This is a big problem for those who are using the t:slim G4 for their CGM data and for those X2 users who will soon be able to see their Dexcom G5 data. Another annoyance about this clip position is that the tubing comes out at the bottom of the pump which increases the opportunity for tubing to hang down below your clothes and to jump out at doorknobs.

The Meh:

The t:slim screen is turned on and off by pushing the silver T:button at the top of the pump. My guess is that I push that button 30 times a day. For unknown reasons Tandem added a plastic cover over this button on the t:case. Previous cases just have a cutout. Unfortunately I found that the button cover made it difficult to turn on my pump. Sometimes it worked the first time; other times I had to push the button 4-5 times. I have arthritis in my hands and am unwilling to tax my joints just to turn on my pump.

Fortunately this was a problem easily fixed. The photo below shows my X-ACTO knife solution.

I found the clip to be quite secure when wearing the pump horizontally, but as I explained above, lifting up the pump to an upside down view doesn’t work for me. IMO the clip is slightly too short when wearing the pump vertically and is not as tight on my waistband as I would like. But it is okay and I know to be careful.

Tasks like removing the pump from the case and changing the clip orientation are not straightforward and no instructions are provided with the case. Fortunately there are instructions available on the Tandem website but that link is not included with the case.

User Feedback on Facebook:

“After wearing my pump all day in the new case, I have to say, I really like this new style case…ALOT! “

“I love my new (pink) case so much I now also have a black one and a purple one on backorder lol”

“Okay, so I may be the odd person out, but I’m not feeling the new case. I don’t like the clip…”

Addressing the cover on the silver T:button — “I’ve found mine getting easier to press- although it’s possible that it’s just my hand getting stronger”

“I just received the new hard case they have designed. No more plastic clips!! Has a metal clip and you can change the cartridge without taking the pump out of the case. I love it!”

“Anyone else annoyed that the pump is upside down with the new t:case when you look at it?! Why didn’t they put the clip on the other side?!”

Addressing the clip placement for horizontal use — “My understanding is they took in feedback from a lot of pump users so either no one thought of that or there were technical limitations that prevent it or they ignored the user feedback.”

“I love it! It’s way more comfortable to wear, and it doesn’t dig in like the old style did. And best of all…it isn’t top heavy anymore!”

“I really still don’t like it. I can’t put it in the center of my bra, which is where I normally wear it, and it won’t stay on my waistband. Putting it in my pocket makes my pants slide down and/or the tubing hangs out.”

“Just got the new clip for the pump but it didn’t come with any information on how to put it on can anyone help me out with this??”

“How do you flip the metal clip on the new case?”

“It is great. I can use the clip on a pair of shorts or put it in the pocket of my trousers without removing the clip.”

“My new T:case came…. WHEEEEE!”

Summary:

I am happy with my t:case. It is compact, functional, and attractive. Although I think the clip design makes a horizontal orientation an unlikely wear for me, I am satisfied to use it vertically or in my pocket. I have previously written that my problem with false occlusion alarms on my X2 was solved by using a case. Whether it is a temperature issue or the cutout for the vent holes, the cases have completely eliminated my alarm problems.

I think that no one could create a case that would please everyone. We each have unique needs and opinions. The t:case is mostly a win for Tandem, but IMO the horizontal clip position is a big problem—especially for integrated CGM use. I know that Tandem had many customers test drive the case and I wonder why the horizontal wear issue was not fixed. Also, did they consider older and disabled users? If it were not for my X-ACTO knife, I would not be able to use this case because of the difficulty of using the T:button. And I am not really that old or very disabled….

Here is a short instructional video about the t:case. I am currently using a black case but also ordered a pink one. In terms of color, I think that the video depicts the color of the cases much better than the Amazon photos.

 

Please note that this post discusses the t:case for the t:slim, t:slim G4, and t:slim X2 pumps. The t:case 480 is for t:flex pumps and is available in black and purple. The t:case 480 only allows a vertical orientation because of the larger insulin cartridge.