Is Facebook becoming like the Gestapo?

Recently, I experienced something I never thought would happen.

I came back from a very emotional meet up with 89 diabetics in Las Vegas for the 1st Diabetes unConference (#duncon) – and had not been on Facebook (FB) for close to a week.  I logged in, to catch up on all the latest and greatest among the many diabetic groups that I belong to there, that I also run as an administrator.  

My first greeting when logging in, was that someone from the state of Texas had attempted to log into my account.  I sorted that out with a simple yes/no … and on I went merrily to play catch up, especially with the gang from the conference.  We were all feeling much like myself … like they’d lost their left foot due to not being with the rest of the “family” (who all got each other thru’ the roller coaster ride of life that we lead with diabetes).

Four hours later, when checking back in, I discovered that I could not gain access due to my ... WTF? - not having a legit name.  They demanded government issued documentation, with a picture to prove who I was in order to consider allowing me back into the fold.  Something similar had happened back in December last year, and I had changed my name at that time to one that they “allowed”.  I did not have to go thru’ the ID demand that they were doing this time around.

Whether someone had snitched on me that I wasn't blue eyed, blonde haired (sorry – I felt like Facebook was acting like the Gestapo with my not conforming - and I apologise to those who felt it was a horrible word to use) – I’ll never know.  Since it was occurring again, in such a short timeframe, was a great puzzle that I didn't quite understand due to the amount of "legit" people who contact me on FB for friendship (and in the end - turn out to be promoting sexual things, or wanting to a new woman in their life).  Uhhhmmm,  like FB .... those are the people YOU should be tracking down!!!  Get with the program!!!!

Depression set in … I felt it was highly un-American that I be asked to supply personal info over the bandwidth to the “offices” of Facebook.  I dug in my paws heels, and figured I could survive without going to get my daily quota of gossip, lurking, etc. on Facebook.  I turned instead to Google+ but found that many people are die hard addicts of Facebook, and not only use it for all their communication, but also use Messenger (that does not work if you are shut out from your FB account).   What has happened to mankind that they have to resort to only using FB for communicating to others? 

Depressed Cat by Angel Tarantella 

The sad part was, most of my diabetic contacts I only knew through FB.  Very few I knew via personal email or telephone/SKYPE.  Being shut out of FB, not being able to let anyone know what had happened …. it was difficult ... I attempted meditation - moved on with life ....

Advance 2 weeks later - April 1st … after sending multitudes (3) government issued ID’s to prove who I was (each time I had sent something – I was told it was not enough to identify that I was legit).  Informing them of what I do for a living - giving them my work place info to contact my bosses for confirmation of who I was – the explanation for my ``other`` name of FatCatAnna (which I’d always used as a Nickname – which is permitted by Facebook)  .....

I finally was given the go ahead to gain access to my account by “Barry”  … except … his  reply was odd …

“Hi,

Thanks for your response. It looks like your name on Facebook doesn't match the name on the ID(s) you submitted.

To help us confirm that you're using your authentic name:

1. Log into your Facebook account
2. Follow the on-screen instructions
3. If you still can't update your name, you'll be able to fill out a contact form “

I logged in … held my breath … and viola … I was back in - no updating required … even despite what they were saying above.  The weird thing?  The name they have me being allowed to use? It is the same friggin' name I had been using all these years, that was questioned back in December.  WTF??

I've had quite the discussion on my wall post from April 1^st, with my use of “Gestapo” – I do realise to some this is a harsh word to use … but at the time I was feeling very emotional – and with the recent problems that Native Americans have also been having that an article was written up about back in February at Business Insider … something just is not right.

So, for now, while I’m still permitted to use Facebook, before I’m reported again for some reason or another (maybe the person reporting me is a cat hater?) – you will find me posting still - though not as frequently as I used to, as this has left a stale taste in my mouth.

The good thing, when it comes to diabetes advocacy, you can find me at many places that are not associated with Facebook ….  Such as Blogger, Instagram, Twitter, Tudiabetes, and of course, the original website that started me off with diabetic blogging/advocacy back in 2008 … Diabetes1.org .  

No, I won’t disappear completely …. yet .... I'm not a fraidy cat!

My Grandmothers fear of becoming a diabetic

I just found out today from a conversation with my Mum, something that was abit sad about my Grandmother, my Dad's Mum who died I believe when she was in her mid 90’s. She lived a full and good life!  I wish I had pictures, but sadly, with my moving, what ones I took, are packed, and my Dad hasn't kept many pictures from the past to share with the family.

The first time I remember seeing my Grandmother was when she came to visit us in Canada, about 10 years after we had immigrated.  It was her first time travelling by air abroad.  She came with my Aunt, and my parents who didn't normally like visitors to stay at our house, kicked my brother and myself out of our rooms for the guests (yee!haa!).

Oma en kleinkind an online colouring book  from Kinderlines 

I'd only been diabetic for about 8 years at the time just about to enter teenage life, and I really didn't think too much of it at the time since I'd had it since such an early stage of life.  Sometimes I think I'm blessed since I didn't know any other way of living other than being a diabetic, and it wasn't all that bad, even with injections, etc.  I was just what my life was like, and still is (but made easier now with newer technology).  I did the urine testing, injected (once a day then), and ate like a little soldier on a schedule since that was the way insulins worked in our bodies in those days. 

I always remember my Aunt criticise my Mum's choice on having a take-out pizza (from a great pizza joint in the west end of Ottawa called El Toro's - they made the best crust and toppings EVER).   My Aunt felt it was "junk food" and I think she thought Canadians must be savages at that point in time as we crammed dripping, gooey pizza into our mouths.  Whether she enjoyed it or not, I will never know.  I just dug in, with whatever my Mum dished out to me according to the diet the dietician had set out for my growing body.  I was a happy camper!

The next time I saw my Grandmother was when she was placed in the hospital in the UK during her 80's about 15 years later.  My Dad at the time couldn't take time off work, and I was temporarily without a job. He paid for year open flight for me to go overseas (not cheap in those days), to make sure my Grandmother was okay.  When I'd arrived, she was already back home from the hospital, doing her own thing.  I really didn't need to help her at all (this woman had the flexibility of a gymnast), and I think I was more of a hindrance being with her as I was disrupting her life.  I found a job, moved out quickly to a bedsit in the village.  Life was good (if only back then I'd appreciated beer the way I do now).

86 year old Johanna Quaas from Halle, Saxony - see her in this fantastic video

What my Mum relayed to me today, after talking to my Dad's brother, and obviously this was disturbing him for many years since her passing away  ….

she was afraid of being like me, a diabetic giving injections for the rest of her life

I'm wondering while she came to visit Canada, if I'd had some hissy fit about giving an injection or a bad urine test (I don't recall doing that - but maybe I did).  I wonder did the glass syringe and 18 gauge stainless steel needle that could be sharpened on a stone scare her when I was living with her in the UK?

I'm really not sure what made her make that comment to my Uncle, but it saddens me to think she felt this way about my having diabetes but know that others today probably have that same feeling when they are faced with the diagnosis of having diabetes.  

That's why I do what I do today with having diabetes for most of my life ....  

Educate 

Blog 

Laugh 

Cry  

Advocate

Find a Cure

My take on the Diabetes unConference in Sin City

Since discovering the #DOC back in 2008  (my first #dblog was at Diabetes1.org) when I was trying to figure out how to use an insulin pump after 41 years of being a human dart board  ... life has changed so much for the better.

Before that time, I didn't know many diabetics that I could chat with, especially on insulin pumps, In order to get the answers I needed for my burning questions on how to use my pump, I went to various online groups based in America such as Tudiabetes.org, Insulinpumpers.org .

It was amazing how much help I got from these various sites, and despite not being in person with everyone, I no longer felt alone dealing with this roller coaster ride.  It was like a breath of fresh air (ahhh - the smell of a hunky hairy chested dude bathing in  Irish Spring!!! PG13)

Spring forward (and we have changed our clocks) .... and we come to the weekend of March 13th, 2015 ... Sin City ... land of make believe and OMG ... 90 diabetics all grouped together at the 1st Diabetes unConference!!! Combined together - we little guinea pigs  running on the big blue wheel - calculated that we have almost ......

2,000 years of the roller coaster ride of diabetes!!!! 

The above 4-legged creature maybe a rat - sorry - the wheel is BLUE ... okay - I'm an artzy fartzy gal!!!

Wow - back off the wheel - phew - I'm out of shape .... that is ALOT of years of diabetes all in one room!!!

Over the period of 3 days we talked / drank / screamed / laughed / farted (sorry - I dropped a rose ) / cried ... alot of emotions/thoughts that had only been retained in our sponge brains were shared within the group discussions that were held at 10 tables within the conference room.  It was frigging amazing!!!!!

Even better was that no one was allowed to use their mobiles for Tweeter / Facebook / picture taking (good thing - since being a Canadian - I couldn't afford a data plan for the USA).  It was really nice ... having everyone not hunched over their little machines.

I think the most important thing for me was meeting up with other diabetics that are new to the #DOC - and I am hoping that they are now encouraged to spread the word about this event - perhaps get into writing their own blogs (and as I  told one attendee - who was wanting to start blogging and worried about "who will read my blog?")......

It does NOT matter

  

You do NOT have to be one of the "famous" American bloggers that were at this event!   Whatever words you put down - in dealing with your diabetes is the most IMPORTANT thing. That is how it is for me .... blogging / advocating for many of us is a way of creating what we hope is a better educated world for others to understand what diabetes is all about.  And for me, it's almost like talking to a head shrink!

So, if you are hoping to attend the next #Duncon event (rumour is it will be held in Sin City again for 2016) .... check for updates on the Facebook ** page or via Twitter (where I haven't been banned from .... yet).

Meanwhile, the Glee episode on the 13th of March with their version of "Come Sail Away" originally performed by Styx (oh oh  - aging myself here)  is the purrfect music that will make me remember how strong all of us are with our battle of the roller coaster ride of diabetes every day!!!

** Please note - due to Facebook complaining that I am not a legit person - they have shut down my page until further notice (they are like Gestapo agents!! ) - so I'm slightly cut off from the #DOC at the moment that posts there alot.  It is abit difficult since I'm still coming down from the high of being with all of these great diabetics last week.  I perhaps feel like some of the diabetics who could either not afford  to attend, or did not find out about the event until it was too late to register .... like an outsider ....  bu the main thing ... you can find me posting more at Tudiabetes again!!!

What Happens in Vegas, Stays in Vegas

Well, I'm on the road again this week after a few weeks back from my last trip.  This time it's off to Las Vegas to attend the Diabetes unConference  which is run by a great team of many well-known American bloggers / advocates in the DOC (Diabetic Online Community).  I'm not dropping names, but you probably know who they are!  

While I'm really excited to go, meet everyone that I only know online, at the same time I'm wondering if I've bitten off more than I can chew as I try to stay on top of roller coaster ride blood sugars.  It's tough!!!  I've taken on more jobs this year (mainly all diabetes related - jezz I wonder why?) and now this past week, my DH and I decided to put the house on the market  .... 

It’s time to move!  

Picture from http://catkote.com/i-am-all-packed-where-we-going/

So, a quick 5 day purge of the house, to make rooms look bigger, yadda, yadda, yadda for the potential buyer in our 810 sq. ft. house has been an exhausting and emotional ordeal (I now know what it feels like for people on these shows where they have to get rid of their stuff ... not fun ... and we've had to do it fast!!!).  What is funny my house seemed bigger to me, but then I’m used to living on a sailboat during the summer months, which is about 275 sq. ft.  I guess I'm very happy in small places?

Back to the reason for this blog ... packing to go to Vegas has been a THRILL (not really)!  Between making sure I don't pack away all my clothing (how many t-shirts can a woman own???) and ensuring that I still can find what has not been packed away (we're loading up a van with all our crap/excess furniture tomorrow into storage, that our real estate agent demanded be removed).  It's a weird feeling, and at times, I've had panic attacks thinking I've packed something I may need over the months while the house is on the market (I'm thinking realistically of a 3 month wait ... if longer ... for this place to sell - since I don't see many small places like ours on the market ... just HUGE places ... e.g. 1,200 sq. ft.).  So, watch for my blog post in a few months about being admitted into a looney bin (written by my DH perhaps???).

Seriously though, with this all going on, my blood sugars, even with the Dexcom, are all over the map (just like I have been with travelling).  I have had to remove furnishings that stored my much loved diabetic "stuff"; I'm reduced to having to ensure that I can locate things in as quick a time as needed.  Especially with having to get ready to go on the road trip to Las Vegas. 

The only good thing about going to this conference though, which just dawned on me as I am typing this out!  If I forget something, there will be other diabetics that I can go to for help!!!  The main thing though is I do travel abit, so I've sort of got it down pat with what I have to bring along with me to keep my diabetes in check.  One tip I can highly recommend ... zip lock bags!!!!  You can see exactly what is inside ... though trust me ... I still panic sometimes that I forget something!

As an Animas insulin pumper, one thing that they have for their clients is a great check list that comes with the  insulin pump startup kit (sadly - I'd hoped they also had it online - but the one that you see in this link is not as good for some reason).  In the list I was given, they want you to bring almost 3X what you would need in infusion sets/insulin cartridges for the time you are away.  Yes, I bring a few spares on top of what I need (hey - imagine if you ripped out your infusion set by accident .. it happens!!!).  So far, touch wood, never had any problems going that route.  I can also pack it all either into my carry on or my brief case - and that's up to sometimes 3 weeks!  Though at that point, things are bulging on my luggage slightly, but I survive.

Well, back to packing boxes - donating what I don't need to Salvation Army, and getting some work done so I can pay my bills for upcoming adventures around the globe plus eventually settling into a new home for many more years to come!!!  Oh I know I'm going to be Happy!!!

Picture from https://ignitechannel.com/sustainable-beautiful-explore-natural-building/

Life in The Bahamas as a T1D Pharmacist and CCDE

A few weeks ago I dropped in at Freeport, in The Bahamas when going on a short cruise for abit of R&R (escape from Old Man Winter ... like many Canadians do at this time of the year).  It was to finally meet up with Christine Snisky who is a pharmacist and CCDE (Caribbean Certified Diabetes Educator) and in her free time she also runs The Grand Bahamas Diabetes Education group on Facebook. She is a Super D Woman in my eyes!!!! Able to leap tall buildings in one leap!!!

Ahhh, there's nothing like life in The Bahamas

My main goal in meeting up with Christine was to present her officially with the blue circle pin, as part of the Pin a Personality Campaign that was started last year by IDF for World Diabetes Day (held every year on November 14^th).  Even though I think she thought I was silly saying that she's “a personality”, I still think anyone who works in the public doing what she does.... is a personality in my eyes.  I felt very honoured to have meet her and knowing how valuable she is to the community in educating diabetes.

She herself has Type 1 diabetes, which she feels was brought on by her autoimmune system being compromised by drugs that she had to take for a condition called Recurrent Respiratory Papillomas (RPP). She had numerous surgeries to remove the tumors from her respiratory tract (leaving her with a whispery sexy voice  ... or at least that’s my take on it <lol>).  If she hadn't had the surgeries, she would have died of suffocation. The good thing though is that she is one of the lucky ones, having been in remission for a long time.  And of all days, as I post this blog, on February 28th … it is the RareDisease Day celebrated all over the world to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. 

Before meeting up with Christine though, since she was working until 1:00 that day, I sauntered around some of the ports shops outside the port, talking to some of the locals.  This is the best part of travelling for me, speaking to locals, finding out what makes them tick, and sometimes finding some of the best deals that the locals go to (and not the tourists).  What became clear to me, and more so after meeting up with Christine.  Bahamas is in dire need of proper education in the diabetes sector.

I was talking to one shop owner, and of course, in my excitement I told her I was meeting up with Christine later that day and that I had had Type 1 diabetes since 1967 (I am such a blurter out person about my diabetes aren't I?). 

She told me that she was a Type 2 diabetic, but after speaking with her, clearly to my unmedical eyes/ears, she was a Type 1.  She'd basically been put on insulin right from the start.  The scary part was she didn't know how to use her insulin, or what it exactly does.  She relayed the story of having a 400 mg/dl (22 mmol/l) blood sugar reading the day before, and “being oh so ever thirsty” and that she’d drank orange juice (OJ)!!!  I told her that OJ has sugar in it, and it would only make matters worse.  She seemed to understand this, but to make her feel not so bad, , I said she could always have put a dash of OJ in the water, to make it taste less boring than just plain water, but to try to drink just plain water and to give some fast acting insulin. 

My DH in the back listening to Christine and I yaaking about diabetes and life in The Bahamas 

Fast acting insulin? She did she not know how to correct her blood sugar with fast acting insulin or really what it was (I explained to how I gave one insulin for food, and another type of insulin for just keeping my blood sugars level).   I could see this was beyond her comprehension but the good thing is she told me she wished she knew these things.  That's when I told her that the same day I was visiting, a meeting at the hospital was taking place, that Christine runs every Tuesday at 7:00, and that if she could – she might want to attend.  She had heard about these meetings, and said she would go. I left hoping she did.

As I went around, I came across others with similar stories.  One store owner, an American who had married a Bahamian, knew about this lady having the high blood sugar and like myself, knew that treating it with orange juice was a no no.

Crikey, she's driving on the WRONG side of the road :)

Finally it was time to meet up Christine (I was worried we wouldn't meet since I had had no data or mobile since we’d left Miami a few days prior).  Luckily, Freeport isn't that big and I was wearing my smoking cat t-shirt as promised so she could spot me in a crowd. Just when I’d sent my darling husband (DH) to scout the public parking lot, who zooms up in their car but Christine!!!  She came out of her car, and I was soooo excited.  We hugged each like we'd known each other for ever!!!  Oh, I’m such an emotional twit aren't I?

Sock Monkey sampling the local brew of The Bahamas - what a trooper

She drove us to a nice quiet area of the island, far away from the floating city folks that were on the boat with us ... and we just chilled out and talked about diabetic education in the islands.  One thing that really got to me,  as of January 1st - VAT (ValueAdded Tax) is now placed on drugs in The Bahamas.  The minimum wage on the islands is barely enough to pay rent and purchase drugs.  Plus most do not have a private insurance like Americans do or a government plan - but that is in the works - but when it will happen who knows.  So, with the 7.5% VAT added, for some people, balancing their income to purchase insulin, etc. is difficult.  

Luckily, the cost of insulin though is not as highly overpriced as it is in the USA; the islands seem to sell their insulin and other medical supplies similar to how we have it set up here in Canada.  Maybe this is due to Bahamas and Canada being an independent Commonwealth realm (we both retain Queen Elizabeth's II as our monarch) - so we follow somewhat same government, but I'm no expert in this area.

Presenting Christine with the blue circle pin which one day will hopefully be the universally recognized symbol of diabetes awareness (I mean who doesn't love blue?). 

So, over a few beers (Christine is gluten free - so she had unsweetened ice tea) - we had a good time planning adventures for educating within The Bahamas ... and hopefully meeting up at the IDF World Diabetes Congress  in Vancouver this November where I'll be working as a volunteer again and cracking the brains of doctors / researchers / you name it I'll delve into many subjects! 

The only one drawback of the whole meeting?  Time flew by way too fast.  Before we knew it, we were speeding off to get back to the port to catch our cruise ship that was going to the next port (Nassau).  Quick hugs, running to the gates to get back on the ship (we were about 10 minutes late for passengers to get back on) - what a rush!!!  For the first time, we were part of the entertainment for folks watching us from the ship, being the last passengers on (hmmm, wonder if they paged our names a few times)!!!  Thank goodness I can run like a crazed woman when I have to ... with Sock Monkey screaming in my ear - go go go!!  Of course,forgetting what I educate other diabetics I mentor, I did not bring any spare insulin with me, etc. but then, if I'd been stranded on the island ... I had Superwoman Pharmacist Christine to help me out for my legal drugs ;) 

Till we meet again Christine and the folks in The Bahamas!!!  Who knows, maybe that dream of living in the islands will be coming faster than planned ... we can be the Team D Crusaders - sailing to various islands in the Exumas / Abacos...  have insulin ... will travel!!!

You can view more of my blogs at Diabetes1.org ... my first blog on this recent R&R can be found at this link ... thanks for reading my fluff (Sock Monkey made me say this).

How long does a blood meter last?

I have been using my little Lolita - a turquoise skinned Free Style Lite from Abbott for God knows how long. It maybe going on 5 years - I'm not sure.

I've been finding that with the strips we use for the Abbott meters - that allow you to test from either side of the strip - that I couldn't test from the left hand side of the test strip. I wasted a few too many strips - and have yet found the time to call Abbott up to get some replacements (hey - a buck a peace adds up after awhile). I had similar problems last year - and they'd actually sent me control solution and new strips.

I was getting Error 3 the last few days - and with no control solution - I was up the creek. Luckily, I was given a new meter a few years ago by the pharmacy I go to here in Quebec - the same brand - and after getting it all set up (very easy) - I am now ready to start using Limoncello 

So, my question, how often should we replace our blood meters? I know with my insulin pens I use - it's stated that you should replace them every 2 years. I've found nothing in my manual that states anything.

NB - the above was posted at Diabetes1.org at this link - but due to problems with posting pictures at their website - I've had to resort to reposting in order to show the picture.  Either way - you'll get the same info - one with picture - one without.  It's your choice where you wish to comment! 

Cancer or diabetes?

This blog post was originally posted back on September 19, 2009 at Diabetes1.org which owns the copyright of this blog.  Due to my inability to update some of the links that no longer work - I have had to resort to posting the blog here.   

~~~~~~~~~~~~~~~~~~~

My friend Darlene's  daughter Jenna, was diagnosed with Stage IV Avealor Rhabdomyosarcoma cancer at the age of 15.  It is a cancerous form of tumor growth that originates in the soft tissues of the body, including the muscles, tendons, and connective tissues and is very aggressive. The most common sites for this tumor to be found include the head, neck, bladder, vagina, arms, legs, and trunk (abdomen).  Jenna had been battling this beast for the past 2 years - and her motto was "One Step at a Time".

I felt a very close connection to Jenna, as many of us did that knew her parents/family.  We were all fighting along side of her in her battle in one way or another.  I know I was ready to kick butt for her!!!  Also, since Spring time, Jenna had been using a pump to infuse morphine to deal with the pain.  I felt in some way very more connected to her, maybe because of my being on an insulin pump that keeps me alive and healthy.

Back in July I saw Jenna when she was visiting her Mum and stepdad Shawn in Rochester, NY (Jenna lives in Carleton Place, Ontario with her father Bob and his wife Jennifer).  She was in pretty good spirits - your usual spunky teenager 17 year old (she can really belt out a tune - I told her she should be on American Idol - and she looked at me like I was off my rockers with that comment ).  It was great to see her enjoying herself and it brought my hopes up for her, as I'm sure it did for others.

Sadly, a few weeks later, she started to experience alot of pain and had to go back to hospital.  During that time she fought the battle of her life and with all her might - but sadly she passed away this week - on September 16th, 2009.   All I know is that her spirit will continue on forever, she was not only beautiful, but also had great courage and remarkable strength.

I just know that if I could have traded my life as a diabetic for hers - I would not have hesitated in a nanosecond!  As I'm sure others would agree with if they thought about it.  If Jenna had been diagnosed with diabetes rather then this evil cancer - she would have been able to survive.  Yes, we have complications associated with diabetes, but we can live with them if we take care of ourselves.  

You can read more of Jenna's story from her father and stepmum's journal - at Jenna's Memorial Fund, Helping Kids with Cancer. 



              ~~~~~~~~~~~~~~~~~~~~

NOTE:  Jenna's Mum finally got to come on board to our Catalina 30 this past weekend - that is named Jenna's Journey.  Sadly, without her husband, as he himself had succumbed to cancer only a few years later after Jenna.  Another angel in heaven has earned their wings. 

The day I saw this boat back in the Spring of 2010, in the backyard of a house in Marblehead, MA, a butterfly flitted by and seemed to hover.  I felt a strange tingle go through me, and I started to cry for some reason (and I'm not a gal that takes easily to shedding a tear).   Jenna LOVED butterflies.  I looked up at the boat that my husband was taking a look at with the owner and it was like she was giving me signal.  That this was the boat she wanted to be on with us on our travels.  My tears were happy tears knowing she'd live on with us with her name and silhouette proudly displayed on the sides of our boat.