Tuesday, June 7, 2016

I Know You Are But What Am I?

I've struggled with understanding my diagnosis for years.  In the past I have wished for a specific label, hoping that it would guide my treatment.  If you have read my postings here you will see that I looked into whether I have MODY.  This was after spending a couple years asking for the proper tests to see if I actually had type 1 diabetes, those tests came back negative.  So I now have come to an acceptance that I have type 2 diabetes which essentially means that I have "diabetes of unknown cause."

The trouble is that this diagnosis is not sufficient to assure that I get proper treatment for my diabetes.  It was six years ago that I started on my (own initiative) managing my diabetes with insulin.  This was only after exhausting my options and concluding that as someone with type 2 I would be denied insulin until I basically ended up in the hospital.  And here it is six years later and I have spent basically the entire time with a treatment regime that is indistinguishable from a type 1 treatment plan.  And for at least the last two years my endo has repeatedly called my (and coded me) as a type 1.  After all these years I have come to accept myself as a type 2, I have resisted accepting a change in diagnosis, it seems to not be supported by specific evidence and I feel like I am abandoning all my brethren who have type 2.


The problem is that I am now facing a quandary.  Maintaining a diagnosis of type 2 carries a great deal of prejudice.  I can stand up to the type of prejudice where people might insulin me, but it is not in my best interest to just accept the prejudice of the medical and insurance system which will deny me treatment that I need.  And unfortunately that wall is looming.  I am fast approaching Medicare which treats type 1 and type 2 very differently.  And my current insurance which is actually quite good has very different standards for type 1 and type 2.  At my latest visit with my endo yesterday we had yet another hypo talk.  You know the talk.  "You can't have an A1c like this without hypos."  "You must be having overnight hypos."  "I don't like those wild swings" (they actually are not that bad).

So my endo again has asked me to start using a CGM.  And I have been thinking about it.  I had the opportunity to take a course with Dr. Stephen Ponder on his "SugarSurfing" technique at the last DiabetesUnconference.   I was even lucky enough to win a signed copy of his book.  But sadly the techniques are not readily implementable without a CGM or testing more than 20 times a day.  So I have been thinking about a CGM.  And my end has become more insistent.  It isn't just the first conversation.  And I have been resistant.  I feel like if I accept a CGM based on her diagnosis of me as type 1 I will have gone through a door and will affect how I identify myself, who I think I am and what tribe I belong to.

I think diabetes labels are "stupid."  People should get access to the treatment that they need, not the treatment that is arbitrary assigned to their label based on cost control.  Sadly I am coming to the realization that I am at the entry door and I will have to decide.  Ultimately I will only harm myself if I don't go through that door.

10 comments:

  1. Will your current insurance pay for a CGM? If so, you should try it as Medicare will not cover it.

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    1. Since my doctor has been diagnostically coding me as T1 it should be automagically approved. My insurance policy says the following "... considers the long-term (greater than 72 hours) therapeutic use of continuous glucose monitoring devices medically necessary as an adjunct to fingerstick testing of blood glucose in adults aged 25 years and older with type 1 diabetes." For Type 2 "Long-term use of continuous glucose monitoring devices is considered experimental and investigational." Pretty much a difference standard of care. I would expect that in the near future Medicare will cave on the CGM issue, but Medicare will still likely have similar prejudicial policies.

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    1. I actually did and thought I would see it in a month or two. But here it is one week after ordering it and it is being shipped. I wonder if it had been ordered under the diagnostic code for T2 if I would have seen such speed.

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  3. I love the CGM, but I do understand the reluctance. We who have devices attached certainly do not want something else. At least I did not want I got mine. Of course now I cannot seem to do without it.

    I referred your blog to the TUDiabetes blog page for the week of June 6, 2016.

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  4. Hi, Brian:

    My name is Kathleen Engel and I am an editor at Health Monitor Network in Montvale, NJ. My company publishes guides on various health conditions that are distributed free to patients through doctors' offices.

    Right now I am working on the next issue of our diabetes guide and, in my research, came across your site—so I thought I'd reach out! I would love to include your comments for our readers—and would run your remarks along with a photo of you. Basically, I'd like to offer readers any tips, tricks or strategies you use that make living with type 2 diabetes manageable. The hope is that what works for you might work for someone else.

    Off the top of my head, subjects I might ask you about include: breakfast (or any meal or snack strategy), exercise, what keeps you motivated, your Aha! Moment (when you realized you had to take diabetes seriously). Of course, if you had something great you wanted to share, that would work, too!

    If you'll let me know an email address, I'd be happy to send you a PDF of our last issue, so you have an idea of what the guide looks like.

    If you are willing to participate, I am happy to call you at a time that's convenient for you. Alternatively, we could do this by email, if you prefer.

    Thanks, Brian! I look forward to hearing from you! If you have any questions, please let me know.

    Best,
    Kathleen Engel
    Editor, Health Monitor Network
    KathleenE@healthmonitor.com

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  5. Hi!!! Great post, it is informativethanks for sharing:):):)

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  6. YES! Agree with this. I was denied an insulin pump because I was initially classified as having type 2 diabetes. There are no subsidies for insulin pump consumables in Australia for people with T2. It's so frustrating that this technology that would greatly benefit my life was withheld from me simply because of the type of diabetes I have. I finally found a doctor who was willing to go above and beyond in running some extra tests and reclassifying as type 1b or non-autoimmune type 1 and finally got hold of my pump. Good luck!

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