There are a lot of really great diabetes-related charities out there. Of course, the biggest in the US are the American Diabetes Association and the Juvenile Diabetes Research Foundation. I’ve contributed in various ways to both over the years. They both do great things, and I like both for different reasons, but I’ve never really felt like either adequately represented me as a diabetic. That’s not to discount the value of what they do because I’ll be the first to say they contribute so much to our lives, but I guess ultimately their priorities are different from mine. I hope that makes sense because I’m not trying to suggest they aren’t worthy organizations at all. Most people aren’t bottomless pits of wealth though so we all pick and choose where to put our charity time, money, and energy, and we pick the one or the few that we think will put our charity to the best use based on what we think is important.

In the past, I haven’t found any other organizations that I felt better represented my interests and priorities, but recently I’ve found myself interested in some other smaller diabetes-related charities, and I’m going to show some love to one of them now. I’ll give some love to the others another time.

I’m really intrigued and excited by what our friend, Manny Hernandez, is doing with the Diabetes Hands Foundation. I have great hope for this nascent organization and see boundless potential in what it could accomplish as its resources blossom. Their goal:

Just that statement makes my eyes well up because that’s how I’ve felt for most of my life. Developing friendships with other ‘betics online has been instrumental to my recovery from my eating disorder and accepting my diabetes. There is no equivalent to feeling like you belong.

DHF’s Mission: To provide an open space for people touched by diabetes to connect with others in pursuit of a healthy life through support, information and creative expression.

They’re accomplishing this with online communities, TuDiabetes.com and its Spanish sister, EsTuDiabetes.com, awareness initiatives like Drawing Diabetes (click the link and watch the video – as an art therapist, I LOVE this!!) and Word in Your Hand (click again and watch another cool video), and grassroots initiatives expanding the online communities to the places people live.

Why do I love what they’re doing and feel like they’re filling a need that had gone unmet by other organizations? While I think a cure would be spectacular, I’m not holding my breath for it. I know there’s nothing like a discussion about a diabetes cure to stir up a lot of emotion-laden opinions, but that’s another topic for another day. My point is that there is no cure now.

At this moment we are living with this disease, and each of us is doing what we can to manage it to the best of our abilities. As long as we’re faced with that challenge, we need to support each other, we need to find ways to refuel our own emotional resources, and we need to increase awareness about what it really means to live with this disease since it seems that most of the world’s impression of diabetes is outdated by at least 25 years. It’s a worthy cause.

The big goal is to raise $20,000 within the next month. DHF has raised 15% of that, $3,015 from a total of 59 contributors. With one month left to go, we need to work together to reach the goal by donating, even if it’s a few dollars. Pack a sandwich for lunch one day next week or bring your breakfast instead of stopping for a fancy-schmancy latte mocha espresso iced coffee beverage. Donate the $5 you saved. Ask your friends and family to do the same. Seriously, it’s not a lot, and the mission of DHF is one that will benefit us all.

If you prefer to send your donation using regular mail, you can send a check made to the order of DIABETES HANDS FOUNDATION to:

Stephanie from Horizon BCBS just called…. I’m so happy, I’m crying…….

I GOT APPROVED FOR A 90-DAY Supply!!!!!!!!!!!

I got a call from the lady, Stephanie, in the Pre-Authorization Dept. at Horizon BCBS of NJ yesterday morning. She had tried calling my home number, but I didn’t get to it. Moments later, I heard my cell ringing. I got to it just in time.

The connection was crappy, so I didn’t hear every word, but I got the message. She said she had re-submitted my request to her supervisor who was passing it on to a nurse for re-review. I would hear from them later in the day.

I wanted to give her a hug, but I said thank you with every bit of sincerity I had hoping she could detect how grateful I was, and we said good-bye. I want to send her a thank-you card, even if the determination isn’t in my favor. I’m still in disbelief that she’s gone to the trouble to help me, just completely dumbfounded.

Of course, I waited all day, and never got a call. A few days ago, when I had been expecting a call from them regarding a determination that I thought could be in my favor, it ended badly. Who wants to bear bad news and become the possible recipient of a diabetic’s angry, hysterical sobbing, right?

I sure as sh** wouldn’t want to have to deliver that news. I’m guessing it’s news they deliver often though based on an exchange I had with another fellow-subscriber of Horizon BCBS of NJ. Regardless, their failure to communicate as promised is further aggravating me.

I am glad Stephanie at least granted me the possibility of not having to jump through more hoops though. It would be awesome if I didn’t have to go through the Appeals Department, and glorious if my sensor supply started flowing again. I’m grateful she listened to me and tried to help. It could still end favorably, but I can’t get my hopes up.

I still had one more sensor in the fridge. I had been saving it mostly because I knew that once I used it, that would be the end. It’s been sitting in there – in the butter compartment of course! – serving as the symbol of hope that my supply would be replenished if I could just ride out the bureaucracy of my insurance company. When I thought Good Morning America was going to follow through with the CGMS insurance denial story, I had thought I’d wear and display it so I could say it was my last one and then there would be no more. I had imagined the story could potentially change the tide in favor of me and my fellow ‘betics seeking coverage.

I’ve decided to use this sensor though. I haven’t used my CGMS since early July, and I miss it. I miss being able to look at the monitor, know where my BG is headed, and be able to take action before a small BG excursion becomes a big one – or feel confident I don’t have to do anything because my BG is cruising along in-range.

If I don’t hear from Horizon by lunchtime, I’ll try calling them. Maybe there will be a miracle, and by the time I’m ready to remove this last lonely sensor, there will be a fresh supply at my doorstep. My fingers are crossed.

Last Sensor 8-28-08

Yesterday I called Horizon Blue Cross Blue Shield of NJ. I had expected a return call from the lady there three days ago regarding a determination for my CGMS sensor request, and never got it. No wonder the girl never called me back. She didn’t want to have to tell me my request had been denied. So much for being grandfathered in. I asked for the reasoning.

Them: The medical director determined it’s investigational.

Me: Well, ya, I know that’s what your company has arbitrarily decided about the CGMS, but why was my case denied? What was it about the specific circumstances of the information regarding me that made the medical director decide against renewing my sensor supply?

Them: It’s investigational and not a covered benefit. You’ll have to go through Appeals now.

Me: Well, I had been incorrectly told to go through them two months ago, and subsequently submitted a packet of information supporting my case to them. What happened to that packet?

Them: I’ll transfer you to Appeals. They should still have it, and you’ll have to discuss it with them.

Me: Fine.

I got the Appeals voicemail. They’re on the phone assisting other members, blah, blah, blah, leave your name, member ID number, and a phone number to reach you. I did and hung up.

Be forewarned that my next thoughts were admittedly irrational, but I was fuming and feeling as spitefully possessed as a Shakespearean villain. I wished very, very bad things on them. I’ll spare you the gory specifics. Then I imagined myself driving to Newark, storming into the Horizon BCBS offices, and screaming that I hope they all get diabetes and die, a special wish I reserve for the most stingy, vile, loathsome of people who purposely try to make the lives of diabetics more complex.

I sent an email with too many f-bombs to count to hubby telling him what happened, and then I decided to call them back. I wanted to talk to someone who would tell me why my case was denied, more than the “it’s investigational” crap.

I cursed at the automated system, listened to their ironic recordings about preventive care while I was on hold (I thought my eyes were going to roll right out of my head…), and finally got a human.

Me: I want to know why I was denied. I’ve been diabetic for 30 years, I have frequent low blood sugars for which I sometimes need assistance, I have complications, I used this for almost a year and it was helping me, and all I’m trying to do is take care of myself because I don’t want to die.

Them: They said that under your benefits it’s not covered, and it’s considered investigational.

Me: So you have a blanket denial that you apply to everyone without even looking at the individual circumstances? Why have I been sitting around for two months waiting for my case to be reviewed when no one really reviews it? They just see what I’m requesting and deny it without even looking at my details? Why didn’t someone just tell me during one of the other dozen phone calls I’ve made that it isn’t and won’t be covered?

Them: You need to speak with appeals. Can I connect you?

This is about the time I was starting to completely freak out, crying hysterically and yelling.

Me: I was already connected to them, and I left a message. I want to talk to someone there because it wasn’t anyone at Appeals who denied me. It was someone in your department, and I want an explanation other than “it’s investigational”. I want someone to explain to me what it was about my case that made them decide CGMS sensors aren’t warranted.

Them: You can have your doctor call, and the medical director will speak with them

Me: They’ll only talk to my doctor? Not me? It’s my health care! It’s my disease! It’s been my disease for 30 years and I’m the one who takes care of it day in and day out, and you’re telling me the person who’s making decisions about how my disease is treated won’t even have a conversation with me? They’ll only talk to the person who chats me up for ten minutes twice a year? Are you kidding me?

Them: Since it’s been denied, you really need to speak with Appeals. They’ll be able to go over everything with you and explain why it was denied.

I had completely lost it by this point, and I’m not sure what exactly I was saying. She put me on hold, and when she came back she told me her supervisor would email the Appeals supervisor to expedite a return call. That’s all she could do for me after she listened to me sobbing for close to ten minutes. She said she was sorry, and I think she actually was, and the call ended.

After I calmed down a little, and had some lunch, I thought about what to do next. I remembered when I had straightened out my desk a couple of days ago that I had found the scrap of paper with the number for the lady at Good Morning America. I had almost thrown it out.

Last month, Manny from tudiabetes.com asked if anyone would be willing to be interviewed by GMA for a segment they were going to do about CGMS insurance denial. It seemed to be their response to the type 1 uproar they caused over a segment they had done about preventing diabetes. Maybe the timing was a coincidence, but no matter.

I offered to speak with them, and the lady called me maybe six weeks ago. At the time I was unable to talk, so I took her number and tried calling her back several times, but she never called me again. I thought maybe they had found enough people to interview since there’s no shortage of us who feel spited by our insurance companies over the CGMS. However, I never heard anything about them airing a story, so I assumed they bagged the idea since it probably ate into their coverage of Brad and Angelina’s twins (gag).

I pulled out that scrap of paper with the scribbled number, and called to leave a message. I told her I was curious if they had ever done the story as I had not seen it or heard about it, and if they hadn’t, I just received word that I had been denied again. I don’t really expect to hear from her, but at least I reminded her it’s an issue.

Later in the afternnon I heard from the young lady who had generously fielded my breakdown. She wanted to know if I considered having this equipment a matter of life or death. I stumbled over that for a minute. I hadn’t ever thought of it like that.

Me: Well… yes.

Them: OK, I’ve made a note of that, and I’m giving the information to my supervisor for review.

I’m not confident it will make a difference, but she clearly heard what I said, and I feel like she understood that I see the CGMS as a critical piece of my diabetes management. She considered what I had said, as cuckoo as I probably sounded, she called me back when she had no obligation to do so, and she was making an effort to help me. All the time I spend on the phone with the health insurance company, it’s a very rare occasion that I feel like anyone there listens or cares, but at that moment, that’s how I felt.

I said before that I hide my diabetes when I interview for jobs. I used to hide it from everyone. Actually I was like that from a very young age only until about five years ago. It was easy to do since I was on MDI. When I started to finally accept it, I was more comfortable disclosing it to others, and since I’ve used a pump, over 4 years now, I’ve worn my diabetes on my hip for the world to see. Of course, most of the world thinks it’s a beeper, but that’s another topic.

I generally don’t care if people know about my ‘betes, and I didn’t used to be concerned about potential employers knowing until it was brought to my attention a couple of years ago that the volunteer information on my resume, that I including with the thought that it revealed something positive about me, might actually be construed as something negative and be cause for employers to discriminate against me.

I promptly removed the volunteer info from my resume, and for every interview I’ve had since then, I’ve made a point of hiding my pump. I’ve even had a couple of interviews that the ‘betes disrupted in one way or another.

I was late to an interview two years ago because I was low when I was getting ready for the interview, struggling to wash my hair because I felt weak and then sweating like a pig at the moment I needed to put on my suit. I had to sit, eat, and chill (and let the sweat evaporate) before I could get dressed and moving. I never heard from them.

There was another interview a couple of months ago during which my CGMS monitor kept vibrating, Low Predicted. I didn’t hear back from them either. I don’t think I would’ve liked that more recent job anyway, but the one I was late for would have been perfect for me so that still smarts when I think of it. Ironically, it was for an art therapist job at a children’s hospital so they probably would have understood too. *sigh*

I know the DCCT warned that hypoglycemia is a risk of keeping BG’s as near normal as possible, but they didn’t mention the risk of letting job opportunities fall through my fingers like spilled orange juice.

Someone recently sent me a private message on Diabetes Daily regarding a thread to which I had responded regarding this job issue. He said he had disclosed his diabetes during an interview, I think to questions about his strengths, and he felt it had worked in his favor because he got the job. I replied that my concern is you never know who your interviewer is and what their background is. He might have been lucky in that his interviewers were able to see the positive side of diabetes.

My fear is disclosing it to the person making the hiring decision, and lo and behold, they have a very negative, probably out-dated impression of what it means to live with diabetes so they write me off thinking I’ll be a drain on resources rather than an especially sensitive, understanding therapist. Nonetheless, his anecdote is making me reconsider my blanket approach of hiding my ‘betes.

Currently, I’m unemployed, and actively looking for a job. The job I want – doing art therapy with diabetics – doesn’t exist, much to my continued frustration. I’ve started looking for jobs all over the country because I want to get a job I’ll like, and relatively speaking, there aren’t tons of art therapy jobs out there so I need to expand my options. Hubby isn’t too keen on moving, but he’s agreed that it doesn’t hurt to apply and see what happens.

I found an opening for an art therapist position at an eating disorder treatment facility in Texas. I don’t have tons of professional experience working with eating disorders, and touting my personal experience with it wouldn’t necessarily work in my favor, so I’m going out on a limb and see if I can use my diabetes as a selling point.

I’ve started to write my cover letter, and I’m just putting it out there. I have diabetes and it makes me an awesome candidate for this job. Having grown up with ‘betes makes me very attune to the complex issues people have with food and the perception of their body, and the family issues that can be inextricably knotted up with those issues.

I figure I haven’t got anything to lose really, and I need to make myself stand out as having something different to offer since I lack professional experience with that population. I’m a little nervous about it, but my hope is that I get the same positive response that my Diabetes Daily friend got, and the doctor responsible for making the hiring decisions will see it as the asset I know it is.

Have others found they were able to use it in their favor in hiring situations, or do most of us hide it like it’s a handicap?