Monthly Archives: September 2018

RDBlog Week Day 3: Mindfulness

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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.

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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

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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. 

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

RDBlog Week Day 1: Wildcard // Fitting In

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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.

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

Brittle Diabetes, Hand Surgery, and the Dog

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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.