Monday, November 14, 2011

World Diabetes Day and the DOC

November is Diabetes awareness month, and Nov. 14th is World Diabetes Day.  There is a lot of celebrating and complaining within the ranks about diabetes and its many and varied issues.

Its a big deal on line, but from what I can see, not so much in the real world.  Diabetes is really a hidden disease.  Not many people know very much about it.  There are several reasons for this.  Diabetes has two types.  And over 90% are Type 2s.  That means that most people who even know a diabetic personally, know a Type 2.  And, although there are similarities, the gulf between our treatments and the challenges we face is massive.   And, from my experiences, Type 1s are mostly very private about their disease.  Ironically, the times that we need the most help and attention is the same time that we feel very removed and depleted.  We just want to be left alone until we feel capable of speaking intelligently.  At that point, we prefer to walk away and get back to what we were doing when the low struck and interrupted our day.  This scene does not serve to educate the people around us.

In an attempt at a real shout out to the public, the JDRF took out a full page ad in the New York Times an attractive picture of a cute child and a chilling statistic.  The caption reads that "Piper has Type 1 diabetes.  One in twenty people like Piper will die from low blood sugar."  I have been reading about this online, and the statistic is valid.  Its awful that parents have to see this, but I can understand why the JDRF has decided to go this route.  It really is time to get this message across.  The artificial pancreas project is pushing for FDA approval and if it does all its supposed to, it should lower this number.  The strong point of the APP is that it will have the ability to turn off the pump if it detects a low blood sugar.  I'm not a big fan of the APP, but this feature would be nice.  It would allow for better sleep for diabetics and their parents.

The DOC, Diabetes Online Community has become important to me.  There exists an entire network of diabetics who have found each other online.  I found it about 5 or 6 years ago when I was learning about Symlin, the new drug I was trying out to supplement my insulin.  There were a few people blogging about their experiences with it.  It helped to encourage me to keep trying and that the nausea and horrible lows would both become manageable.  Now, I use the DOC to stay in touch with what is going on in research, in the JDRF, in advocacy, and now in diabetes alert dogs.  It is a useful tool and can be both encouraging and nurturing.  Just like any group who have one thing in common, we are a mixed bag of people. but that makes it interesting and effective.

And sadly, I would not even be aware that it is World Diabetes Day, or even month if not for the DOC.

Friday, November 4, 2011

JDRF walk 2011 and TrialNet

My JDRF walk for this year was again fun and successful.  I had 17 people at the walk and many others who couldn't participate in the walk, but gave generous donations.  It was a warm and sunny day which makes a walk along Lake Erie a real pleasure.

Before the walk began, I wandered along the booth and education area and came across a TrialNet study.  I had heard of this before, but didn't know exactly what it was.  Its actually very simple.  Its a blood test that can help determine if the relative of a Type 1 diabetic has antibodies that can cause diabetes.  Four antibodies are tested for.  The more a person has, the more likely they are to develop diabetes.  I called Cassie and Becky over to be tested.  They had their blood drawn and it was sent to a test lab.

The results came back a few days ago.  Both girls had good results.  They had 0 of the 4 antibodies which is the best possible result.  It was a relief for me.  Especially for Becky.  She had mononucleosis in 6th grade.  I had mono in high school and it was soon after that that I developed symptoms of diabetes.  It can never really be known for sure, what causes a specific case, but mono is one of the most likely culprits.

Gary is in the process of having this test done as well and I'm hoping he will have the same good news.

My health has been good, but with some worries lately.  My creatinine has increased to 1.1 which is the highest its been.  I'm still getting some ankle swelling and am thirsty all morning.  I see the nephrologist at the end of this month and am hoping for a good report.  I think that if the worry factor was decreased, I wouldn't notice the other things so much.  After my initial visit, I was told that my results were nothing to worry about.  I will be drawn again in a few weeks and the results will be compared to the initial tests.

I have also had some stomach symptoms.  Twice now, I have had an upset and irritated feeling stomach that has lasted several days.  Its hard not to blame the immunosuppression, but since it has cleared up on its own, I am thinking it wasn't the pills.  I have been very busy lately, and am wondering if the stress of that was causing my stomach to react.

My cholesterol and LDL have been higher.  Cholesterol 227 and LDL 127.  I'm expecting an increase in my statin the next time I see my endo.

None of these things has any uncomfortable symptoms, so I am still feeling good.  My BGs have been good lately.  I have increased my Lantus to 8 units/day and now can get away with not taking any Novolog with dinner on some days.

The Senator is doing well.  His barking is better with few relapses.  He has been doing really well on our outings. He's very attentive to me and not as easily distracted.

Becky, left for California last week.  They drove and will be living with Cassie for a week or so until they find an apartment near where she will be working in San diego.  Again, I was happy and proud for her to be able to do this, but sad for us.  We really miss her.  And Senator is missing Callie.  I already have a trip planned for a visit next month.  :)