Can Advocacy Take a Vacation?

Laddie_Head SquareI haven’t been writing much these days. I was definitely burned out after Diabetes Blog Week but was on the exit ramp before that. I began blogging 2+ years ago and although I am proud of what I have shared about my life with Type 1 and my opinions about diabetes issues, I am starting to feel that I have just about said it all. I am definitely tired of the work of writing and creating graphics for my posts. At the same time I don’t think that I am ready to quit. In my first post for Test Guess and Go, I wrote:

The medical system in the United States is changing and I really wonder what the next years will bring for those of us with diabetes….  And before I know it, I will be on Medicare with a new set of rules that will save me lots of money in some areas, but will try to dictate that I live with 3 test strips a day and throw away my CGM because it is not proven technology.

Nothing in that statement has changed since 2013. My Medicare worries used to be about lack of CGM coverage. In mid-2015 I know people with diabetes on Medicare who are no longer able to obtain test strips for name-brand BG meters. I know several women with Type 1 who have had difficulty getting pump supplies on a timely basis. Finding a provider for Part B insulin for pumps continues to be a common difficulty.

Today I am about 20 months away from the transition to Medicare. It is too soon to evaluate my choices about Supplemental and Advantage plans. It is too soon to start hoarding Dexcom sensors and Freestyle test strips because of limited expiration dates. I am trying to purchase pump supplies on a timely basis, but it seems unwise to stock too many supplies because I will be buying a new pump in the fall of 2016.

My hope is to hang on as an active blogger in order to chronicle the journey of moving from a lifetime of excellent private insurance to the scary unknowns of Medicare. I am proud of what has been accomplished at Test Guess and Go by my writing and that of Sue from Pennsylvania and Sue from New York. I don’t want to see Test Guess and Go fade into oblivion.

Lately I have felt guilty that by not writing and actively engaging in diabetes social media that I am not doing “my job.” I am failing in my public persona as a diabetes advocate. I know that I am being too hard on myself and that starting a blog is not a life contract to do it forever.

Advocacy things that I have done in 2015:

I have followed through with every email from JDRF urging me to contact my elected representatives on diabetes-centric legislation. I participated in the campaign for the Special Diabetes Program which was successfully renewed for two years in April with $150 million allocated for diabetes research.

I have contacted my Senators and House Representative to support S. 804: Medicare CGM Access Act of 2015 and H.R. 1427: Medicare CGM Access Act of 2015. Like many people I have been frustrated that this is the 3rd generation of these bills and they are still rated by GovTrack as having 0-1% chance of being enacted. Even if you contacted your elected representatives for the 2013 and 2014 bills, please do it again for the bills of the current legislative session. Remember that Medicare policy trickles down to all insurance and even if you are not age 65, this coverage is crucial for people of all ages with diabetes. It is super easy to do if you go to the JDRF CGM Coverage by Medicare page.

I have joined DPAC (Diabetes Patient Advocacy Coalition). DPAC was co-founded by Bennet Dunlap and Christel Marchand Aprigliano. The purpose of the organization is to unify and streamline diabetes advocacy and make it easy for each one of us to have our voice heard by U.S. decision makers. If you are not yet a member of this group, please read this blogpost by Christel at theperfectD and this post by Sue at Diabetes Ramblings. Then follow the links to join DPAC.

I was fairly active through the first half of 2015 and advocated for DOC programs such as Spare a Rose, Save a Child. I attended the Unconference and generally immersed myself in diabetes stuff.

After writing but not publishing this post, I wrote a blogpost to my daughters-in-law urging them to learn the symptoms of Type 1 diabetes and share the stories of Kycie and David, two young children who recently lost their lives as a result of Type 1 diabetes.

Advocacy things that I have not done in 2015:

I have rarely used my blog to educate and encourage others to advocate for important diabetes issues.

I have continued to read every blog in my blogroll, but in recent months I have left few comments and feel bad about that. Many times I have started a comment and then deleted it after becoming lazy and paralyzed in my thoughts halfway through.

I have been mostly absent from Twitter and #DSMA and #DCDE TweetChats. Obviously it’s not a requirement to participate in things like this, but it is a sign of support to others in the DOC. In general I am not a huge Twitter person and I may start using my age as an excuse to maintain a minimal Twitter presence.

I stayed on the sidelines for the CrossFit issue. On one hand that is good because I didn’t say something stupid and insensitive. On the other hand, I didn’t rush to support the heartfelt posts of my Type 2 friends including Kate Cornell, Sue Rericha and Bea Sparks. A “Like” on Facebook isn’t a sufficient response to seeing wounds of blame, shame, and anger re-opened in the diabetes community.

Moving forward?

For now I am on summer vacation. I’m not mad or sad. You don’t need to comment and tell me how wonderful I am or give me permission to be a bum. I’m just tired of writing and being overly immersed in diabetes social media and I don’t want to feel guilty about that.Vacation Beach I’m still reading blogs and keeping up with Facebook. I’m supporting my friends doing runs and bike rides to raise money for diabetes. I’m still here and for better or worse, I still have diabetes.

Fortunately my blogging malaise has not been accompanied by personal burn-out. My diabetes is difficult these days, but I get up every morning with the optimism that I’ll do better today than yesterday with blood sugars. I’ve ordered a mysugr T-shirt and will wear it proudly while battling my D-monster “Glukomutant.” I’ve been walking a ton (#Fitbit) and working with a personal trainer. I’ve cleaned closets, played golf, read a lot of books, and done some much-needed yard work. I’ve been super-Grandma and spent a lot of time with my four grandchildren.

I have many things to write about, but I don’t want to write. Maybe by giving myself permission to not write, I’ll feel free to start writing again. Maybe. Maybe not. This is not a good-bye, au revoir, adios, or sayonara post. I kind of think of it as:

See you later, alligator. In a while, crocodile.

10 thoughts on “Can Advocacy Take a Vacation?

  1. As instructed, I’m not going to comment that you’re so great (although you are!). When I wrote a similarly-themed blog post, you told me to take a well-deserved vacation/hiatus! So now I’m returning the favor. Hope you enjoy your summer, Laddie.

  2. you’ve done a lot – not just with advocacy but seems you have organized your home and taken time to enjoy life in general. I’ll keep getting notifications when you post and when you do I will read. I don’t comment so much on the blogs I read since often I read them on my phone and typing is more difficult. Still hoping Medicare and CGM learn to get along soon – preferably in the next 20 months. Enjoy your summer and you are pretty darn great.

    • I was in Annapolis in June, but because I was babysitting, I wasn’t willing to drive too far away for a meet-up. I will definitely contact you when I am there with more freedom and less responsibility. I definitely thought of you while I was there.

  3. This sounds like it could have been written by me. (I’d call it a sophomore slump, but it really happens a bit after the second year is up). But the one thing I can say is this: with very few exceptions, the blogs I followed religiously when I first got involved in the community all seem to have gone mostly (if not entirely) inactive. I admit that I miss the regular posts from Kim, Sara, and Jess; from Bethany, Brian, and George.

    But just as actively participating in the community serves to spread the message that “you are not alone”, so does sitting on the sidelines. If not for the six folks I named above, I would not have felt comfortable letting a two-day lapse in blogging morph into a two-week lapse and then a two-month lapse. I don’t need someone else to tell me that it’s OK not to blog, but knowing that other “regulars” have found peace in taking an indefinite break makes it easier for me.

  4. Laddie, taking a vacation is simply that; you let your body and mind recharge. Sadly, there will never be an end to the work needing to be done for diabetes advocacy, so when you feel ready, you can step right back in with a renewed spirit. I think we all get how frustrating the daily grind can be, but give yourself some credit for the work that you did this year! Much love…

  5. I been in a slump lately too. But I really believe blogging should never feel like an obligation. Enjoy your break and don’t even give it a second thought!!

  6. Laddie, I know you said you don’t want words about how wonderful you are but you ARE AMAZING!! I love this post, I personally think you are being too hard on yourself because I think you are the BEST diabetes advocate out there! I loved hearing your amazing words when you would comment on my blog and other blogs. I’ve been bad lately about reading other people’s blog and posting on my own so I decided today to try and catch up and one of the first blog entries I see is this and it definitely spoke to me. Enjoy your vacation! Don’t be too hard on yourself and we are here for you when you get back 🙂

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