Hi all, I have created another powerpoint presentation about diabetes.  This one is intended for parents/caregivers, but definitely not for kids

Type 1 Diabetes and Real Life

Well, as an update to yesterday’s post The more you do, the more you have to do I am finally able to almost read again after having my eyes dilated for the second time in a week.

I saw a retina specialist today and they did some scans and photos of my eyes using some sort of dye, which has the odd side effect of turning my urine to an almost florescent yellow color for the next day or so.

The photos showed some aneurysms, but none that required anything more than being checked again in 6 months.  My left eye was worse, as it actually had some in the macula (the spot on the retina where light focuses) which is why my vision is worse in that eye.  Yea!  Another holding pattern to see what will happen next!

Basically, there’s nothing that can be done for that, so I’ll just have to live with 20/25 in that eye.  Honestly, tho, there are good days where it seems normal and bad days where it is noticeably not.

I mentioned to the doc that there were no signs of this a year ago and it seemed to have come on pretty suddenly.   He just gave me the “Dude, you’ve been diabetic for 40 years” look.

Now on to my endo call.  She wants to run another series of tests on me due to the fact that I had low sodium levels.  In particular, she is looking for Autoimmune Adrenal Insufficiency, more affectionately known as Addison’s Disease.

Honestly the last 3 months….  Let’s see:  Essential Tremors, osteo-arthritis starting in my hands, vision problems, possible Addison’s.  Well at least my cholesterol numbers were great and my A1c was a 6.0. whoop-dee-fraking-doo.

Mom’s almost 87 years old and having to have back surgery for some herniated disks next week.  My ex is still out of work, so I’m trying to help out all I can with groceries and school fees/supplies.  And don’t even get me started on how many projects are going on at work right now…

I need a vacation, you know a real one?  One of those where you actually go somewhere fun instead of the staycations (the ones where you stay home).  I haven’t been on one of those in probably 10 years.  But doesn’t look like I’ll get one anytime soon, let alone have someone to go with that isn’t a blood relative…

Let’s just say my stress level is slightly elevated and I’m tending to not be my usual boisterous, lovable self right now.

Last week, I had my annual eye exam.  I had recently been having some trouble, I thought it neeeded a new prescription aince my control has gotten so much tighter over the last couple of years.  Last year the doc said my eyes looked great, all signs of retinopathy were gone.  This year tho… 

This year he saw some signs of bleeding near my retina in both eyes.  My left eye was the worst, and he couldn’t correct my vision to 20/20… 20/25 was as close as he could get on that eye. 

I have my appt with a retinal specialist in the morning.  I guess one of the things that has me kind of worried is the speed at which this appointment was set, no waiting for weeks.

It’s been 40 years, so I guess complications shouldn’t suprise me.  It just irks the hell out of me that they start up after I finally get a serious handle on my control.  My last 3 A1cs were 6.0, 5.8, 6.3… much better than the nearly 8 I was at two years ago.  And, honestly, vision problems are probably the complication I fear most.

Guess we’ll see what he says in the morning.  I set the appointment for first thing which I usually don’t do for eye exams.  Probably won’t be getting much done at work until after lunch when I can actually read again

Several of my tweeps gave me some info/support about it and I am thankful for that!

I’ll let you know what he says…  (Yes, Sara, it really is a man)

Scott

There has been a lot of activity recently in trying to create more awareness about adult type one diabetics, both those diagnosed as children and those diagnosed as adults. I’ve blogged here and here about the JDRF. The Kansas City Chapter has been especially frustrating for me. I sent the following e-mail carpet bomb to every email address for the local chapter asking why are the KC events so hard to find?

In your spring 2010 news letter there was an article Let’s Meet: Calling All Kansas City Adults With Type 1 but nowhere in the article does it say how to find out when or where? I’m a member of a loose affiliation of bloggers, DiabetesAdvocates.org, and have been actively searching for events where I could share my experiences with other diabetics, yet it seems every time I hear about an event it has either already happened or I hear about it from another source. For example, the poker run event on June 12th. I heard about that on June 10 and it was in a newsletter from a radio station nothing from JDRF. I get emails from jdrf.org so what am I missing here? It is very frustrating to someone who wants to be able to participate can’t seem to find out how.

Had a bit of an email conversation with one of their office staff and expressed my frustration with the KC branch and the JDRF in general.  The end result?  They added me to some mailing lists.  So I guess that is a win.  I still feel their adult T1 outreach is pretty hollow.

This point resonated very strongly with me recently when Scott Johnson tried to herd us all together to tell what we, Adult T1′s, would like to see in a T1 conference.  Basically, it is the DOC that is spearheading this effort, along with the Children With Diabetes organization, which organizes and puts on the Friends for Life conference.  In the past, the focus has been children/teens with diabetes, but those children do grow up.  Their needs change and that is starting to get some well deserved attention.  Kudos CWD!

Now we can get to what started me on this little tirade.  The JDRF sent me an email looking for applicants for it’s 2011 Children’s Conference in Washington, DC.  I believe that this is an extremely important event as it is designed to keep research dollars from the federal government flowing into Type 1 projects.

Applicants must be between the ages of 4 and 17.

And that is where I got annoyed, as it still seems that the Adult T1 community doesn’t exist.   How about putting some adult diabetics in front of Congress, JDRF?  So we can explain the toll that living with diabetes puts on us day-in day-out for our entire lives.  So we can tell about decades of dealing with the physical, mental, and financial toll that diabetes places on us and our families.   And illustrate why a cure is so important so no other child has to endure this.

When I was a child, the JDRF was some what interested in me.  As an adult not so much.  They recently put out An Adult T1 Toolkit, which contains a lot of good information, but even that is directed mainly at the newly diagnosed.

It is very frustrating, to me at least, to see the JDRF, an organization devoted to finding the cure, simply ignoring those of us who have been out here the longest

Everyone check out Scott Johnson’s blog today at Adult Type 1 Conference

Looking for suggestions of what we, as adults, want in a diabtetic conference.  Please put your suggestions there and read what others have suggested.  Comments here on this topic will be ignored, so go to Adult Type 1 Conference to be heard!