A Tandem Vacation

Is it back to the future or forward to the past? 

I’m not quite sure.

What I do know is that this month is my two-year anniversary using a Tandem insulin pump and I just went back to using my Animas Vibe. I am hoping that an older, simpler pump will ease my navigation through the current dark clouds of my Type 1 diabetes. I wrote a blogpost in late November about my diabetes life as a country music ballad and things haven’t changed much. My elderly dog is recovering well from pneumonia but struggling to move around due to arthritis and an injured foot. The cold and cloudiness of late fall continue to trap me in gloom and icy streets prevent neighborhood walks. I have been in an extended funk where my diabetes doesn’t follow the expectations of “If I do A, then B will happen.” A lot of time I do A and seemingly nothing happens. Is it the pump? Is it the insulin? Is it my behavior? Is it one of Diatribe’s 42 factors that can impact blood sugar? I am burdened by diabetes technology that doesn’t give me sufficient control over intrusive beeps and sirens.

Many of you know that when I get frustrated with my D-Life, I try new tools with the conviction that there is a solution to BG frustrations. I have added Lantus as an adjunct to pump therapy with the Untethered Regimen. I have adopted low carb diets and reset my life with a month of Whole 30. I have changed types of insulin and models of infusion sets. Wil DuBois of Diabetes Mine wrote an article this week titled “To Pump or Not to Pump with Diabetes?” and shared his feelings about the benefits of changing up your D-regimen: 

“I find that any time I change from one tool to another, I do better. If I changed every two months, I’d probably stay in control. I think it’s because change makes you focus. That, or diabetes is an intelligent alien parasite that can be caught off-guard only for a short time.”

But back to the subject of this post. I am using my Animas Vibe in place of my Tandem t:slim X2. I have always relied on the Vibe as a backup pump so it is not a bad idea to road test it after two years in the closet. I figured that I would quickly miss the X2 but have instead discovered that I really like this old pump.

I was concerned that going back to scrolling for carb and BG numbers would be horrible but in many ways it is easier than using a touchscreen and navigating through multiple “Are you sure?” screens. I really appreciate the immediate bolus delivery of the Vibe. With Animas, I program the bolus, it whirrs, and delivers insulin before I can get the pump back in my pocket. With Tandem, I program the bolus, it delays for a while, micro-boluses, and eventually finishes with a confirmatory vibrate a minute or two or three later. The Animas clip is a delight with its easy attachment and actually holds the pump securely on my waistband. Temporary basals are simple to enter and a temp basal of zero does not result in an annoying warning alert several minutes later. The Combo Bolus function remembers my last setting rather than requiring a recreation of the split and duration each time. My arthritic hands are having an easier time with the Vibe buttons than with the increasingly stiff T-button on my X2.

There are lots of wonderful things about Tandem pumps but I have been one of the unlucky people who gets occlusion alarms. Most users don’t get them. The vast majority of the alarms are false. I just hit “Resume Insulin” and go on my way. Lately I have had a couple of alarms that actually required replacement of the infusion set and/or cartridge. I have done extensive troubleshooting with Tandem over the years and am on my 4th pump. Only one of those pumps did not give me occlusion alarms and it unfortunately had a defective T-button. I never had occlusions in 12 years of pumping with Medtronic and Animas.

I am tired of troubleshooting. I sometimes experience one or two occlusion alarms a week and then go a while without them. But after two years of alarms, I think about occlusions almost every time I bolus. I average 8-9 boluses per day and that is a lot of thinking about occlusions. I am tired of holding the pump with the tubing extended post-bolus to prevent occlusions. I am tired of feeling guilty for stubbornly refusing to use the Tandem case and for not changing my cartridge every 3 days. I have a low TDD of insulin and an every 3-day cartridge change results in wasting as much insulin as I use. I do replace my infusion set every 2 days.

Longterm I know that I will eventually be back to Tandem. I am probably just being a pouty and whiny problem child. Despite fewer alarms and intrusions into my life, the Vibe has not cured my diabetes but I am doing better. I am committed to Dexcom and thus don’t envision switching back to Medtronic. I am super excited about getting access to the Dexcom G6 and Basal IQ; as someone on Medicare, that should happen in the spring. Hopefully the benefits of Basal IQ and eventually Control IQ will outweigh the insulin delivery problems. An Animas pump is not a longterm option. Johnson & Johnson abandoned the pump market and there is no customer support for my out-of-warranty Vibe. If it quits working or the case breaks, I am done. Fortunately I have a lot of supplies and was recently given enough reservoirs to last for several years. I can use Tandem infusion sets by substituting the t:lock tubing with luer lock tubing.

I think highly of Tandem and have always had good customer service. Until starting to use the t:slim X2, I was never a problem child with diabetes tech and continue to believe that there is something wrong with an insulin pump that frequently quits delivering insulin. Is it the design of the pump? Is it my low insulin use? Is it random bad luck? Am I at fault? I don’t know and am at a point as Gone with the Wind’s Rhett Butler would say: “Frankly, my dear, I don’t give a damn.”

Diabetes Country Ballad: One of THOSE Posts

Diabetes Awareness Month is not over so I guess I am allowed to  post a blood and gore photo. The bleeding on my belly was much worse than the tissue shows, so just envision 10x the blood of the photo. Oh let’s just be outrageous and imagine 100x the blood! It is still November and I can b*tch about diabetes and the frustrations of dealing with my D-tech. I can be strong on the outside and be sad inside. It is my 42nd November with diabetes and I can do whatever I darn well please.

Today was a weird day and it ended up being a perfect 12-hour basal test. 

My dog Abby had surgery two months ago for a condition called “larangeal paralysis” for which the poster child is elderly Labrador retrievers. The biggest risk of this surgery is aspiration pneumonia. I knew that Abby was sick yesterday and early this morning her lethargy and 103.3 temperature sent us to the emergency vet. She is currently in doggie intensive care inside an oxygen tent with an IV for fluids and antibiotics. We have chosen to treat this episode of pneumonia knowing that we won’t treat again. 

But I didn’t get breakfast.

Then I had previously promised to take care of the grandchildren today. I’m not quite sure why the older ones didn’t have school, but they didn’t. I could have canceled, but since Abby was in the dog hospital, I picked up the kids and we came to my house for Christmas crafts, game time, and doing our best to keep 18-month year old Natalie off of the stairs. I fed the kids lunch but didn’t get around to eating myself.

No lunch.

I drove the kids home mid-afternoon and then stopped at Costco on the way home. I got home at about 5:00 and my BG was at close to 100 after starting the day at 80-ish. Over the next 2 hours, nothing much happened. So a perfect basal test. A 20-point rise over 12 hours is testament to great basal rates and I was kinda feelin’ okay about that.

But then.

I bolused 32g carbs for the Whole 30 stuffed pepper I was having for dinner. The hubby hates dinners like this but he is out of town. 

Bolus. Tandem pump alarms for an occlusion alarm. Ugh! My TruSteel site was a little sore this afternoon so I changed out the site but not the tubing or cartridge. Tried the bolus again. Nope! Another occlusion alarm. 

Although I am a Tandem “doesn’t follow the rules” girl, I changed out both the cartridge and the infusion set. I tried to pull the 100+ units of insulin from the previous cartridge but it was mostly bubbles and I just tossed it. When I pulled out the TruSteel set, I got gobs of blood. My bathroom countertop shows the riffraff of my diabetes debris.

New infusion set, new cartridge, and new insulin. I bolused again for the stuffed pepper. 

Last time I looked at my CGM, it was 139 with a slanted arrow up. 

Remember my BG was about 100 at 6:23pm. 

So my daytime basals are good as my BG only rose 20 points over 12 hours. But my diabetes tech failed me: both the infusion site and the finicky occlusion alarms of my Tandem pump. I have double-bolused for dinner and my BG is still rising. Well, actually I tripled or quadrupled bolused but the pump alarmed on the first attempts.

It is now after 8:00pm and my BG is still rising. I am hungry for dinner but won’t eat until I am convinced that my infusion site, pump, and insulin are functioning properly.

It is now 9:00pm and the numbers are not going down.

Sometimes the hardest part of diabetes is that when you do it right, it does you wrong. 

A country music ballad of…

Betrayal, Frustration, and Sadness.

********

Tuesday morning note: Abby is home and doing well.

Type 1 Diabetes and my Medicare Drug Plan

There is nothing special about today’s blogpost. It is just my experience choosing a new Medicare Part D drug plan. My only advice to you is to consider what you require in a drug plan and what the financial ramifications are. Don’t assume that what you used in 2018 is your best choice for 2019.

I now understand one way that Medicare drug plans make lots of money. I am only in my second year of Medicare and it is obvious that it would be easier to stay with what I am doing rather than make a change is logical and financially-expedient. Inertia. Yeah, it’s easier to do nothing than to do something. It can be laziness or just comfort in living with what you know. But you have to remember that doing nothing is a decision and that decision may not be the best decision.

My current drug plan has worked well since I went on Medicare in the spring of 2017. But I have recently started taking an arthritis drug that is not part of that plan’s formulary. It is not a hugely expensive drug; it is just a lesser-prescribed anti-inflammatory. I have received an exception-to-formulary approval for the medicine through 2019 but the monthly co-pay is almost as much as my monthly premium cost. 

So I have wisely gotten off my duff and gone to the Medicare Find-a-Plan website to compare 2019 Part D plans available in my area. I entered my zip code, answered some basic questions, and listed the drugs that I take. I only take 3 drugs under my Part D plan and it didn’t take long to enter the names and dosages. If you have a long list, you can save your drugs to a password-protected drug ID so that you don’t have to enter them every time you visit the website.

I entered my desired pharmacies and selected the option to look at drug plans. You can also use this option to compare Advantage plans.

The wisdom of examining my 2019 choices was immediately apparent. Having entered Walgreens, CVS, and mail order as choices, the cheapest option combining premiums, deductibles, and drug costs was $231 for CVS mail order and $233 for CVS retail. The tenth cheapest plan would be almost $900! Staying with my current plan would be almost $700. Formulary is the name-of-the-game in choosing a Medicare drug plan….

Sometimes money is not the only decision-making factor in choosing a drug plan. As mentioned above, my cheapest drug plan option for 2019 would involve switching to CVS and I have three reasons for wanting to stay with Walgreens.

One, I have used Walgreens for most of my adult life. It has always worked well and my philosophy is “if it ain’t broke, don’t fix it.”

Two, as someone who uses an insulin pump, my insulin is covered under Medicare Part B rather than through my drug plan. The savings are huge because Medicare pays 80% of the cost of my insulin and my Medigap policy pays the remaining 20% leaving me with no out-of-pocket cost for insulin. Due to Medicare regulations and unawareness of this coverage by many pharmacies, it can be difficult to establish and maintain Part B insulin coverage. Before I started Medicare, I was advised by several Type 1 friends that Walgreens and its national Medicare department is one of the best pharmacies for setting up Part B insulin. I have online diabetes friends who get their Part B insulin successfully from CVS, Krogers, and other pharmacy chains, but once again for me “if it ain’t broke, don’t fix it.” I could probably get Part B insulin at Walgreens and other prescriptions at CVS, but I prefer having my prescriptions with one pharmacy. Convenience for me and I think that the occasional glitches in receiving Part B insulin are more easily resolved because I am well-known at my local pharmacy.

Three, I am a snowbird and leave the cold and snow of Minnesota in late December. The idea of transferring my prescriptions in 2019 to CVS through a pharmacy in Arizona seems overly complicated. I am willing to pay a premium to avoid the potential problems of the switch.

I am mostly sure of the drug plan that I am selecting for 2019. It only has two stars out of five stars and at Amazon that might scare me. But my previous Part D plan only had two stars and it was fine. I am lucky that I do not take expensive drugs and even luckier that I do not pay for insulin through Part D. But even still, a wrong part D plan could be an expensive mistake. If I do nothing, I will be automatically enrolled in my previous plan and that would be an expensive default. FYI I do not have to cancel the old plan; that will happen automatically when I I enroll in a new plan.

This blogpost is certainly not a “how-to” post. However, it is a reminder that if you are on Medicare, don’t assume that what you did in 2018 is the best choice for 2019. I’ve gotten off my duff. Be sure that you do the same. You have until December 7 to make a change or confirm that your current plan is still your best option.

Lots of I Don’t Know’s

Okay. Let’s talk about Basic Medicare** and the Dexcom G6. Then let’s talk about Basic Medicare** and Tandem Basal IQ. And then let’s just admit that we don’t know the answers to our questions and that we’re not going to get answers in the next 5 minutes.

Who, what, when, where, why? 

Yeah, I don’t have a clue.

As someone on Medicare I’ve felt left out in some of my Facebook groups recently. In the Dexcom D5/G6 Users group and the DEXCOM G6 group, the vast majority of topics are about the G6. Do you like it? What is great? What is terrible? Adhesives, accuracy, and sensor longevity. Insurance and supply issues. The Tandem tSlim Pump group is all about Basal IQ with the majority of users stating that it is fabulous. There are questions about how it works and at what point basal insulin is suspended and then resumed. Stories about climbing Mt. Everest and others wondering about how to coordinate the prescription from their doctor, the training, and the software download. I don’t fit in anymore and I have no advice to give. In fact I am a little bored in these groups and mostly not checking in.

You see—I’m on Medicare. I don’t have the Dexcom G6 and my Tandem X2 t:slim pump is not updated to Basal IQ. I am not whining. Okay, maybe I am–just a little. But mostly I am just stating facts.

After weeks of rumors, it was officially announced on October 16 that Medicare will begin covering the Dexcom G6 for Medicare recipients. The nitty-gritty has not been worked out but it is estimated that April 2019 is a reasonable target date.

For those of us who have been involved in advocacy for CGM coverage by Medicare for years and who have been joyously receiving coverage since the second half of 2017, this announcement is welcomed but generates more questions than answers. I think that the more you know, the more questions you have. Addressing customers on the Dexcom G5, the news release states:

“Once G6 is available, Dexcom will be reaching out to current Medicare G5 customers when their transmitter is eligible to be replaced. Dexcom will also discuss the G6 and the Medicare beneficiary’s eligibility during routine monthly contact.”

That sounds very straight forward but I worry that it is not. The elephant in the room for those of us on G5 is The Receiver. In January 2017 after the initial approval of the Dexcom G5 by Medicare, I wrote a post titled “Medicare and CGM Coverage: Love Your Receiver!” and explained how Medicare justified the approval of the G5 as Durable Medical Equipment (DME) because the receiver had an estimated 3-year life. Therefore for those of us on Medicare, the G5 receiver has a 3-year warranty. Although we are now allowed to use our smart devices to read our G5 data, Medicare regulations still state that the smartphone is used “in conjunction with” the receiver. And FDA approval of both the Dexcom G5 and G6 requires a receiver to be provided as part of the initial bundle.

I have an old-style Dexcom G5 receiver that cannot be updated to G6 in contrast with the newer touchscreen G5 receiver that can be updated remotely to G6. Medicare through stupid regulations that I don’t understand does not allow Medicare recipients to participate in manufacturer upgrade programs. Thus Dexcom cannot give me the option of paying $100 or $25 or whatever to exchange my dated receiver for a touchscreen G5 or G6 receiver. 

Technically my G5 receiver is warrantied for 3 years and I can’t upgrade it. Am I going to be able to switch to the Dexcom G6? Interestingly, the Dexcom press release only addresses the transmitter and makes no mention of the receiver. Without knowing the details of Dexcom/Medicare negotiations, I have no way of knowing my status. Is everyone forgetting the FDA requirement of the G6 receiver? Is Dexcom going to provide G6 receivers to current G5 users at no charge? Will I get a G6 transmitter and sensors without a receiver? IMO there is no way in h*ll that Medicare will pay for another receiver. Because the Medicare/Dexcom relationship is on a subscription basis, will all of the previous rules about upgrades be thrown to the wind?

As I said above, the estimate is that Dexcom G6 products will be provided to Medicare recipients starting in April of 2019. I have neither seen nor heard of specifics regarding this rollout. There are lots of discussions and rumors floating around Facebook but no one really knows. I have been on Medicare long enough to live by the mantra: “When I know, I’ll know. Until then, I won’t.”

If I were not using a Tandem X2 pump, I would not care much about using Dexcom G6. I look forward to an easier insertion and no required calibrations with the G6, but neither is a huge deal for me. But I really look forward to updating my Tandem X2 pump to Basal IQ which automatically shuts off basal with predicted lows. And then the future Control IQ which will function as an early generation artificial pancreas. 

But if things are in the dark with Dexcom and Medicare, they are really in the dark with Tandem and Medicare. The last communication I had from Tandem regarding the use of my pump as a receiver for my Dexcom CGM was in November 2017. The webmail stated:

“Dear Customer: As someone who, according to our records, has a t:slim X2™ Pump and also has Medicare for health insurance benefits, you may be aware that Medicare coverage of continuous glucose monitoring (CGM) is limited to viewing CGM data only on a Dexcom receiver and NOT a smart phone or an insulin pump.”

Since then I have heard nothing.

Frankly I think that the current Tandem policy regarding Medicare is: “Live and let live.” Some people are being told by their Tandem reps that it is okay to use their pump with Dexcom. But I do not think that is true because there has been no official announcement allowing the pump as a Dexcom receiver. At the same time there is no enforcement of the policy and Tandem is not sending reminder emails about Medicare. Although one part of me thinks that it is poor customer policy that Tandem is not communicating with Medicare recipients, the other part is okay with just ignoring the problem.

Unfortunately the problem of Tandem and Medicare will come to a head when the Dexcom G6 is distributed to Medicare users. Will we be allowed to download the Basal IQ software update (which requires G6) to our X2 pumps? Tandem has said nothing and unfortunately IMO it would be a total violation of current Medicare policies to allow the update.

Once again we don’t know the answers.

No answers to who, what, when, where, why.

Just a reminder to be patient and go with the flow…

Of no information…

and…

Fingers crossed for the ability of those on Medicare to benefit from the latest and greatest in diabetes technology.

Until then, just remember the Medicare mantra:

“When I know, I’ll know. Until then, I won’t.”

*******

** Please note that although Medicare Advantage plans must cover everything covered by Basic Medicare, they may have more flexible policies than Basic Medicare and provide more benefits. Currently some of these plans are already covering the Dexcom G6, but most are in line with Basic Medicare.

RDBlog Week Day 3: Mindfulness

Today’s Topic: Mindfulness – What does mindfulness mean to you and how can it help as we live with our autoimmune condition?

When I consider people whom I consider to be “mindful,” I find that I admire most of them and get totally annoyed by a few. I think it has to do with confusing the definition of mindfulness with stereotypes, pretense, and gobbledegook. It may have to do with having come of age in the ‘60’s and ‘70’s when many things we now associate with mindfulness were linked with “those hippie people.” It may have to do with a few individuals in my life who have seemingly morphed from mindfulness into total self-absorption. Opposed to them are some women whom I consider the epitome of mindfulness and their inner peace manifests through their kindness to other people. I don’t know whether other people would describe me as mindful and I probably come across more as a down-to-earth Midwestern Grandma who used to be an accountant. At the same time I benefit greatly from the mental aspects of my twice-weekly yoga and have a history of using meditation techniques to deal with anxiety and occasionally pain. So maybe I am more mindful than I think.

Before I go too far, I should start with a definition and I’ll use one from the online Greater Good Magazine of the University of California Berkeley.

“Mindfulness means maintaining a moment-by-moment awareness of our thoughts, feelings, bodily sensations, and surrounding environment, through a gentle, nurturing lens.

Mindfulness also involves acceptance, meaning that we pay attention to our thoughts and feelings without judging them—without believing, for instance, that there’s a “right” or “wrong” way to think or feel in a given moment. When we practice mindfulness, our thoughts tune into what we’re sensing in the present moment rather than rehashing the past or imagining the future.”

I tend to use meditation and mindfulness as synonyms and that is not correct. IMO you can be mindful by living with awareness and acceptance of your life and you don’t have to sit cross-legged and meditate. You can use deep breathing to relax and ease pain while you watch TV in the evenings. You can learn to accept your chronic medical conditions without giving up the fight to maximize your capabilities and overcome barriers to good health. In cycling class I sometimes close my eyes and pedal with the music while blocking out the visual cues of numbers and colors on the monitor. The inner focus makes the hard hills easier. Maybe that is a formula for a mindful life where we can gain strength by accepting what is inside us rather than fighting outside stimuli. For the most part fear of the future does not help us deal with the present and for sure none of us thrive with self-criticism. 

In general I am bad at meditation. I used to be able to lie down in my living room and complete an entire series of breathing and progressive relaxation scripts. My mind and body felt renewed and eerily wonderful afterwards. These days my thoughts wander and I think of this, that, or the other. I don’t seem very interested in reining in my random thoughts and maybe I just don’t need meditation at this point in my life. Or maybe I just don’t practice it enough to get much benefit.

But I like to think that I am somewhat mindful and that my life with multiple autoimmune conditions is enhanced when I accept my today with no judgement on yesterday or tomorrow. I strongly believe that when I am comfortable in my own skin, I am a better spouse, friend, parent, neighbor, and citizen of the world.

*******

If you would like to read other blogposts from today’s topic on RDBlog Week, click here.

RD Blog Week Day 2: Flexibility for Staying Fit

Today’s Topic: Tips How do you stay fit, cope with stress, relax, or capitalize on a great day. Tell us your secrets for the best life possible.

When the arthritis gods chose what type of arthritis to add to my life, they picked one that was a good fit for me. That sounds crazy and of course I wish that my list of chronic health conditions did not include any type of arthritis. My systemic arthritis is inflammatory spondyloarthropathy. It is a type of arthritis where for many people pain and stiffness improve with movement as opposed to rest. Before my diagnosis, the most painful thing for me was sitting and I couldn’t drive for more than 20-30 minutes without getting out of the car and stretching. But I could hike 10 miles or walk 18 holes of golf and feel great. My symptoms did not fit with many types of rheumatic conditions because I did not experience fatigue.

These days I deal with both spondylitis and osteoarthritis and I am extremely lucky that fatigue is still not part of my daily battle. A good day for me is a day with exercise. My body feels better with movement and for sure my soul does. My biggest challenge is that my feet, hands, and elbows do not allow me to participate in many of my favorite activities.

So how do I incorporate exercise in my life? 

Flexibility is the key.

Flexibility in replacing previous activities with activities that work with my body. Tennis and other racquet sports are a distant memory. But I can ride a bicycle and participate in studio cycling classes as long as I wear my lace-up hand/wrist braces.

Flexibility in how I participate in sports. I am still reeling from the recent, but probably permanent inability to walk for 9 holes of golf much less 18. But once my left hand fully recovers from surgery, I will be able to play golf using a riding cart. 

Flexibility in where I exercise. I previously belonged to a Lifetime Fitness Club. Although participants in the fitness classes were encouraged to modify exercises to their abilities, I found that I was modifying everything. I moved to the local YMCA and have thrived with a menu of senior-oriented fitness classes. 

Flexibility in the level of my activities. I used to do “regular” yoga. Now I do “Forever Well” yoga and occasionally gentle yoga. Both my 12-1/2 year old Labrador retriever and I have difficulty with long walks on pavement, but we can take multiple shorter walks through the day and go to the dog park with wood chip paths.

Flexibility in my attitude. I work hard to appreciate what I can do and not mourn over what I can’t. Acceptance improves with practice and my glass half full personality helps with that.

Flexibility in my joints, muscles, and tendons. That is kind of a joke because it is the hardest of the flexibilities for me to achieve. But I do my best to keep moving everything. I have to laugh at my rheumatologist who recommends that I push myself but only hard enough that I am not sore afterwards. I’ve never been able to figure that out until I’m sore afterwards….

In general my two kinds of arthritis feud over exercise. Undifferentiated spondylitis says “Go, Go, Go!” and osteoarthritis says “No Way!” But somehow we work it out with the goal of as many good days with exercise as possible. 

*******

If you’d like to read other posts on today’s RDBlog Week topic, click here.

RDBlog Week Day 1: Wildcard // Fitting In

fullsizeoutput_2a9f

Today’s Topic:  Everything Else – Is there something we missed in this year’s prompts?  This wildcard is your place to add it in.  Not everything made our list so be adventurous and take us in a new direction.  Sometimes the everything wildcard is the seed of a new prompt for next year so let your mind roam and see where it goes.  Maybe mindfulness is on your mind?  Or perhaps you have a funny story?  We are all ready to hear the scoop on what is on your mind that was missed elsewhere.

Laddie_Head SquareI started blogging in the spring of 2013 in order to share my life with Type 1 Diabetes and to chronicle my journey towards Medicare. My blog title reflected the requirement to Test my blood sugar many times a day while knowing that diabetes was fickle and that I needed to Guess what would happen in the next ten minutes and the next ten hours. My attitude was and is to do my best and Go despite living with a health condition where sometimes 1 + 1 = 2 and other times equals 237 or 174 or 62. Although I stated in my first blogpost that I was living with several other autoimmune/inflammatory conditions, arthritis was not a big enough deal to warrant a specific mention. Five and a half years later I find that arthritis limits my life much more than diabetes. Sadly the list of favorite activities that I have abandoned or will have to abandon due to arthritis is growing longer. 

I have had Type 1 diabetes since 1976 and have been active in the Diabetes Online Community for almost 15 years. I had no problem finding my niche because my diabetes is “classic” Type 1 diabetes—whatever that means. The diabetes world used to be easily divided into Type 1 and Type 2 diabetes with a few pregnant ladies having Gestational Diabetes. But over the years diabetes social media has become more complicated as it has become apparent that there may be as many manifestations of diabetes as there are people with diabetes. In addition to Type 1, Type 2, Gestational, there is Type 1.5, LADA, pre-diabetes, MODY, Type 1 with insulin resistance, Type 2 with autoimmune components, and etc. and etc.

So here I am taking steps into the social media world of arthritis and finding myself in the “not sure where I fit in” category. I have a couple of online diabetes friends who live with rheumatoid arthritis and they have invited me into their arthritis online world. But I do not have RA and frankly have an easier journey of pain and disability than my RA friends. Interesting my “serious” and “systemic” arthritis is inflammatory spondyloarthropathy which can be every bit as debilitating as RA. But as the years go by it is apparent that the progression of my spondylitis fits very well with “undifferentiated spondyloarthropathy” as outlined in this article. My disease does not seem to have worsened much in the last 10 years and I continue to be very responsive to NSAIDs. 

Inflammatory spondyloarthropathy can have effects on peripheral joints of the hands, wrists, feet, and ankles. But all along my rheumatologist has emphasized that my peripheral joint issues are osteoarthritis. If I had doubts about his diagnosis, both a foot specialist and hand surgeon analyzed my x-rays this summer as “classic osteoarthritis.” In August I had surgery for the carpometacarpal (thumb/wrist) joint of my left hand. Foot surgery has also been recommended but I have chosen to do everything I can to modify my lifestyle to escape surgery. Unfortunately lifestyle modifications mean no more extreme hiking, no more long walks in nearby regional parks, and no more aerobics classes. I gave up tennis and pickle ball a long time ago. Fortunately I am able to participate in yoga and cycling classes at my local YMCA. I know that in the future swimming and water aerobics will be reasonable choices.

I used to feel out of place in the waiting room of my rheumatologist’s office. I don’t require a walker and for the most part feel strong and self-sufficient. But I look at myself at the gym these days. I wear lace-up wrist braces on both hands and last week added a knee brace for a tweaked knee. Unseen, but very important, are the orthotic inserts in my shoes. Then I add the diabetes paraphernalia of a continuous glucose monitor on the back of my arm and an insulin pump on my waistband. 

So I am not sure exactly how I will fit into RDBlog Week. But one thing about arthritis is that it is an equal-opportunity umbrella for many rheumatic diseases. Pain and disability don’t discriminate on whether or not you want to participate. I have found tremendous support in the online diabetes world and hope to find an equally supportive community in the arthritis world.

*******

If you’d like to check out other RABlog Week posts from today, click on this link.

Brittle Diabetes, Hand Surgery, and the Dog

My blog has been languishing in summer doldrums and it is time to check in or check out. Lest you think that the three subjects in the title are connected, they’re not—except kinda sorta.

Brittle Diabetes

Looking for information to update a health history document, I recently reviewed my medical record from a previous internist. I thought that his notes from my first visit were interesting. What jumped out was “Brittle DM” at the top of the page. A few weeks ago there was a Facebook discussion about the word “brittle’ as a descriptor of diabetes. Most people considered it to be an outdated and inaccurate term that should be trashed. I am a little more open-minded about the subject and believe that there is a small subset of people with Type 1 diabetes whose disease is much more difficult to manage than that of most of us. Diabetes Forecast had an article in 2014 that addressed the brittle diabetes debate and quoted a Brazilian endocrinologist who described brittle diabetes as “glucose fluctuation so severe that a person cannot have a normal life.”

I am not writing about brittle DM in order to start a terminology debate, but rather to illustrate that in the past many of us with Type 1 were labeled brittle and labile. My internist was not ignorant about diabetes in 2002 and other notes mention Type 1. He actually understood clearly that my diabetes was different than that of most of his other patients. As far as I know he had only one other Type 1 patient and he often asked about my technology, especially my CGM in later years, to learn more to help this other patient. 

Other comments from this visit showed that I was still using NPH despite having previously been under the care of a renowned endocrinologist. The new doctor immediately transitioned me to Lantus which resulted in the biggest improvement ever in my diabetes care. No reputable doctor could read this chart note without thinking Type 1 diabetes as I had frozen shoulder, dealt with hypoglycemia, and took Synthroid for the common comorbidity of hypothyroidism.

So in the old days, I had brittle diabetes and lots of the baggage that goes along with it. In 2018 I have regular hard-to-manage pain-in-the-neck Type 1 diabetes  and lots of the comorbidity baggage. 

Hand Surgery

Many of you know that I had hand surgery in mid-August for the carpometacarpal thumb joint of my left hand. Arthritis and bone spurs had resulted in enough pain that it was time to get it fixed. My rheumatologist assured me that this is one of the most successful joint surgeries and I hope that is the case. I am recovering as expected and trying to curb my impatience at not being good-as-new yet. I am still wearing a brace and dutifully doing the assigned exercises 3 times a day. I am back to spinning classes for exercise because I can do it mostly one-handed. My body and soul miss yoga but know that I can’t put enough weight on the hand to participate safely. I am on the mend and have at least recovered enough to type two-handed. BTW arthritis in this joint is one of the many gifts that post-menopausal women receive more often than other people….

The Dog

In May I shared that 12-year old Abby the Black Lab was diagnosed with chronic bronchitis. Despite using an inhaler all summer, her breathing has gotten worse and it has been determined that she has laryngeal paralysis, or more specifically GOLPP. The only treatment at her stage of the disease is surgery and I always swore that I wouldn’t subject a 12-year old dog to surgery. But Abby is still active, happy, eating and drinking well and with the vet’s advice, we have determined that euthanasia isn’t the ‘right” choice at this time. She is having surgery next Tuesday with a specialist in “Lar Par” (vet lingo). I hope we have made the right choice because Abby has always been a much-loved and perfect dog. Abby used to write posts for Test Guess and Go and this is my favorite.

The Intertwined Relationship?

Exercise is a cornerstone of my diabetes management. Hand surgery, as well as foot arthritis, has limited my exercise this summer and I am unable to do things like mow the yard and walk the golf course. Although I am doing intense studio cycling classes, the rest of my day is fairly inactive. Abby is not allowed to go on walks until she has recovered from surgery and that is another unfortunate reduction in my activity level. Diabetes does not like that and I keep bumping up the insulin and periodically rage bolusing. It doesn’t help that I have a recently replaced insulin pump and wonder if I just need different settings than the old pump. Or whether it is this or that or who knows what. My diabetes may not be brittle, but it sure is hard to figure out sometimes. So yes, everything is related: diabetes, arthritis surgery, and the dog.

Thank-you Tandem: A Replacement Pump

I recently wrote two blogposts (here and here) about false occlusion alarms on my Tandem t:slim X2 pump. I was not shy about sharing my frustrations and I want to update my story with the fingers-crossed!!! resolution of my problem.

I have always had good customer service from Tandem. Despite the long wait times on hold reported by some people on Facebook, I have never had to wait more than a couple of minutes. I have never yelled, cried, or been rude to Tandem tech reps, but lately I have worried that they might start to label me as a “customer from h*ll” as I repeatedly called to report more occlusion alarms.

The problem with false occlusion alarms is that when the pump is not shrieking about the stoppage of insulin, it works fine. Thus my pump passed all the tests that that Tandem support had me go through and in the end the in-house reps did not have the authority to authorize a replacement pump. The issue was referred to my local trainer. 

When my first X2 had weekly occlusion alarms for many months, I met with this trainer to review my technique on reservoir fills and infusion sets. We have a good relationship and when she heard that I had experienced 5 occlusion alarms in 9 days, she arranged for an immediate X2 replacement. The new pump arrived within 24 hours and I have been happily carrying the case-less pump in my pocket. So far there have been no occlusion alarms and I am cautiously optimistic that my problem is solved.

Although I am happy with the new pump, I don’t seem to be able to stay away from Velcro. Maybe it is an addiction…. Or maybe it is just the inability to accept diabetes tech when it doesn’t quite fit into my life. Soon I will be heading to South Carolina for a few days in the ocean and pool with grandkids and family. After that I am having hand surgery. Both occasions require a clip on the pump. 

The Tandem case with a clip would work for the surgery but not for the beach. I want a clip on my pump to attach it to the pants portion of my tankini swimsuit and the case would work for that. But when I am in the water, I want to use my Aquapac pump case (actually a Radio Microphone case) purchased many years ago as a waterproof case for my Medtronic pumps. It is an expensive and somewhat bulky solution that allows me to wear my pump strapped around my waist with guaranteed water protection. The Tandem case is too large to fit into the Aquapac. 

So I am back to a Nite ize Hip clip applied directly to my pump. Rather than using the two-sided tape that comes with the clips, I use Scotch Outdoor Mounting Tape because it is equally strong but much easier to remove. Unfortunately the Nite Ize clip is only marginally better than the Tandem clip when it comes to falling off my waistband and I applied Velcro hook pieces to both sides of the clip interior to provide some grip. People on Facebook have reported using heat shrink on the Tandem clip but I am not sure how that would work with the different design of the Nite Ize clip. And anyway, Velcro is what I know and Velcro is what I have in my junk drawer.

Today I have a new pump that seems to accept living in my pocket without a case. I have a Nite Ize clip applied directly to the pump which allows me to clip the pump to my swimsuit but is small enough to fit into various pockets and the Aquapac pump case. The clip is attached to my pump with a strong tape that is easy to remove when I decide to go clip-less or use the case instead. 

Pump. Clip. Velcro. No occlusions. That just about sums it up.

Tandem Occlusion Alarms: Crying Uncle

Last week I published a blogpost addressing my annoyance with false occlusion alarms on my Tandem X2 insulin pump. Periodically Tandem techs have advised me that using a case might eliminate the alarms and that has actually been my experience. But I hate the case which makes the pump heavy and bulky instead of slim and sleek. Thinking that maybe adding something to the pump to protect the vent holes might mimic the case, I experimented with attaching a black plastic ring to the back of the pump. 

A few hours after publishing the blogpost, I added an update:

7/26 Late Morning: Unfortunately my science experiment is already a FAILURE with an occlusion alarm during basal delivery this morning. I totally jinxed myself by publishing this blogpost. In defeat I have already taken off the black washer. I spent 45 minutes on the phone with Tandem and the pump passed all of the tests. Of course it would because the pump works fine most of the time. I even changed my cartridges every 3 days for the last week and a half and got 4 alarms within the last 8 days. The issue has been sent to the local rep and I guess I can try to work with him to get a replacement pump. But I am not convinced that a replacement pump will matter. Why do I get these alarms and so many people don’t???😩😩😩

In my typical stubborn fashion, I put the case-less and clip-less pump back in my pocket. Fast forward to Saturday where I had another occlusion alarm—the 5th alarm in 9 days. (Please note that these alarms stop insulin delivery so they are a serious problem.) Not only did the blogpost jinx me, one of my Facebook friends who never gets occlusions got an alarm on her X2. Then another friend got an occlusion on his Medtronic pump. Occlusions are spreading like wildfire through the diabetes pumping community!

Maybe the wildfire remark is an overreach, but I cried uncle and put my pump in a t:case vowing to wear it clipped to my waistband. Unfortunately I had previously broken my black case  and was stuck using the pink case which I don’t like. Boy, do I sound like someone with a severe case of #1stWorldPrivilege! In my defense, Amy Tenderich of Diabetes Mine figured out a long time ago that design is important for diabetes devices and her 2007 “Open Letter to Steve Jobs” went viral.

The 24 hours that I wore the pink case reinforced now much I hate it. Both the shade of pink and the amount of black showing through the cutouts bug me. I decided to purchase a new case and was disappointed that black is out of stock in the Tandem Online Store and at Amazon. So it was back to the drawing board. I devised a minor engineering solution to secure the Tandem clip to the broken case by using Velcro in place of the missing plastic anchor strip. So far it is working and my fingers are crossed that the fix will be durable. The Velcro does double duty by adding “grab” to help prevent the pump from sliding off my waistband, an unfortunate common t:case problem. 

So it has been another-day another-adjustment to diabetes tech. If I continue to get occlusion alarms on this pump, I will now be totally justified in battling for a replacement pump. If a case solves the alarm problem, I should be happy. But I will still be frustrated. Frustrated that Tandem promotes the small size of the X2 with photos of the case-less pump. Frustrated that many people use the t:slim successfully without a case and I can’t. And maybe most importantly, frustrated that I still don’t understand why.

*******

7/30/18 Afternoon: I need to stop publishing blogposts because once again my fix that was successful for two days FAILED. The clip slipped out of place and the pump fell off my waist mid-morning. Ugh! My latest solution to prevent going back to the pink case is to attach a Nite Ize clip to the back of the case using strong outdoor adhesive tape. There are various pieces of Velcro on the inside of the clip to make sure the pump stays put. Although I do not miss my Animas pumps in many ways, I do miss the clip that easily attached to the pump and held it tightly on my waist.