Wednesday, November 4, 2009

Neuropathy is Stupid

Yep, I said it. And I’m only like a month into this irritatingness.

There are positives and negatives to my medication.

- My head is in the clouds
- It gets rid of most of the pain
- I pay more attention to what I’m doing
- I earn more CVS Dollars because it means a new prescription

- My head is in the clouds
- It only gets rid of most of the pain
- I have to pay more attention to what I’m doing so I don’t fall or hit something
- I have to give CVS even more of my paycheck

The good thing is that most of my complete delirium should subside when I find the right dosage.

I typically try to take things as they come and not overreact because emotion won’t change the reality of a situation. Sometimes it’s not easy. This is one of those things. And I feel like I talk about it all the time but it’s only because it’s irritating me so much. The condemnation from my family over another "drug" (aka prescription) is also a pretty unpleasant “side effect“ of neuropathy.

The thing that’s frustrating with diabetes (and neuropathy) is there are no vacations. There’s not a day without insulin…unless you want to die, but I’m fairly certain most diabetics don’t, being that there are so many alive. Lots of diabetics go without testing their blood daily, but that’s really not recommended. And if you never thought you’d need the stuff talked about in your math classes growing up in the “real world” you’d be incorrect. Granted, I am incredibly grateful I live in a time that I do, where I can live a for-the-most-part normal life and enjoy a close-to-average lifespan. AND, I’ve met a lot great people I never would have if we didn’t have the connection of being diabetic.

When I was diagnosed with diabetes I didn’t really ever feel the need to connect with other diabetics. I didn’t want to go to a group and looking for a diabetic online community wasn’t even on my radar. At one point, about a year and a half after I was diagnosed I ended up in a public speaking class with another diabetic, I had to give an “informational” speech, I talked about my trusty pump. The girl approached me after class and told me she had diabetes too, I think I curtly said "oh" and walked away. (I feel absolutely HORRIBLE about this now. I think the rejection from my family over diabetes made me pretty cold toward the whole idea of being IN a diabetes community. I had yet to face that whether I accepted it or not, diabetes made me part of a community) It wasn’t until early 2008 that I really started to reach out to other diabetics. Trying to learn from mistakes and knowing now how great it is to find other people to relate with, I’ve looked into neuropathy groups. The groups are held at churches, retirement communities and hospitals. Needless to say, I will not be going to any of those. Discovering this has made me pretty irritated with the idea that I have “old people” health issues…diabetes, neuropathy and high cholesterol.  Realistically, they’re not “old people” problems…I have them, I’m 23.

Venting helps you come to terms with things, right? I like to think so, and I feel I’ve sufficiently vented…for today.

Benched/24 Hour Day...and Gym

Apparently I need to get better about writing something when I have an idea...I've now benched two posts because they no longer seem to fit.

BUT, I can tell you about my day...which is slightly more comical than what I had been writing.

So, last night was one of my overnight of the days I work that shift always ends up in being a 24 hour or longer day for me. Before work was family drama (we can skip over that though) then got to work and after I finished my book I was hand writing a blog that was to later be posted. In the middle of my writing my hands had started tingling and hurt too bad to finish (another reason it's not being posted, my "flow" was interrupted). I'm having some serious issues accepting this whole neuropathy idea, it sucks. So, having to stop writing immediately propelled me into a pretty bad frame of mind. THEN I took more of my medication which made me even more out of it.

It's my job to be nice to people, it suits me fairly well because from what I hear, I'm a pretty nice person. Which means I don't generally have to work too hard. Around the time my medication kicked in was when members started coming in in the morning. There's this one member and I always say goodbye to him prematurely and always feel bad. So this morning I used my incredible observation skills to bring up he frequently comes in in the morning with a Michigan beanie. Trying to be as friendly as possible, I mention the hat and ask if he's a Michigan fan (because if if you're smart, you would be) and he snaps back that it's not a Michigan hat and walks away. This medication makes me really out of it, then in addition I was exhausted and incredibly frustrated with my hand/leg tingly situation...I started to cry. Over a rude grumpy old man and a hat. Awesome. Not real tears streaming down my face...but tears were in my eyes.

Then I head to class feeling like I was on the moon (the medication). I'm pretty sure I was getting some stares on the train, but it's not all that unusual...for whatever reason, I think I'm pretty normal looking. I sat in class only to have my teacher laugh at me most of the morning as she was trying to lecture because my eyes were wandering all over and I kept nodding off. At least I brought some comic relief to the classroom?

On my way back to the train station to head home I had a lovely interaction with an SF cop. He pulled up beside the sidewalk as I was walking, yelled my name out his window and started talking to me. It was pretty funny, I can't recall his name, but he stopped me as he was patrolling (I think that's what it's called) a street protest that I walked by to get to my class and we spoke briefly...three or so weeks ago. I then proceeded walking and he pulled over the car again haha. Funny, funny.

Then I came home and slept after being up for 24 hours. Whilst I was still asleep I had a whole conversation with my mother about robots and my current activity (which had been getting ready to go out, duh). Then I had a nice dinner...which has shot my sugars up to 308...ugh, 30 mins ago they were 150 or something.

Not an exciting blog, by any means, but that was my Tuesday :)  ...because I know you cared

Sunday, November 1, 2009

Celebrity Status

Over 171 MILLION people worldwide have Diabetes. That's a lot, right? Apparently 24 million of those people are in the US. Now, don't get me wrong, there are a lot of times where I feel completely alone in this; until very recently I haven't had contact with other diabetics and despite the prevalence of diabetes, our society know so very little.

Lance Armstrong started one of the most well known cancer charities in the US, if not worldwide. How many people have a yellow "Livestrong" bracelet? I know I do. And, when I was first diagnosed (and told I potentially had a bunch of other things going on: cancer, tumors, cysts and a heart problem) I bought and read all of his books. His story is inspirational, I am not doubting that. I'm just saying that he put his name on the name "cancer," and now everyone is SO much more aware of cancer research/funding/information.

Michael J. Fox started his own foundation for Parkinson's Disease. He is actually what inspired this blog, I'm currently reading his book, "Always Looking Up: The Adventures of an Incurable Optimist." Thus far I'm really enjoying his story. BUT, he used his star status to bring attention to Parkinson's Disease, not only in the general public, but in government as well. I'll be honest, I knew practically nothing prior to hearing of his diagnosis, but I found out more because I've always respected and loved him as an actor. I'm sure if I were a little older I would have payed more attention to Parkinson's with discovering Muhammad Ali's diagnosis.

Looking at Michael and Lance's wonderful work it makes me wonder what the celebrity diabetics are doing. Now, I promise, I'm not trying to knock any diabetic celebrities....well, maybe Halle Berry. Much like any other chronic illness one treatment plan doesn't work for everyone. Every Type 1 needs to be on insulin...unless you're Halle. But the dosages vary greatly from person to person. I'm 23, have high cholesterol and neuropathy. Not every 23 y/o diabetic has that, some have more, some have different complications, some have fewer complications. Some opt for pumps, some take daily shots. What I'm trying to say is: treatment varies greatly. But it's just the same with any other disease.

I wish there was a celebrity that openly promoted diabetes awareness. The celebrities I know of do not shy away from discussing their diabetes when asked, but they don't openly discuss. Perhaps this is because some people will assume you are less able to perform. Even as a former athlete, I can hardly imagine what it's like for Jay Cutler and Adam Morrison as they compete. When you have a bad game are people going to question your diabetes management? I get it completely.

The diabetic community is so divided. It was recently pointed out to me that diabetes doesn't even have a solid "color" to represent the diabetic charity calls it red, the other, blue. Imagine the power we'd have if we'd just unite. A celebrity taking ownership would be greatly beneficial I believe.

Another thought on why we don't have a "stand out" celebrity representing diabetes is that unlike Parkinson's and cancer, diabetes is something you can primarily live and doesn't usually require you to retire from your profession. Lance Armstrong had to stop cycling because of his critical cancer condition. Michael J. Fox performed for years after his diagnosis, but eventually had to stop, only after his "retirement" was he able to create a foundation and awareness campaign. If diabetic celebrities wait until they're too sick to work I feel they lose their appeal to young diabetics. I know I don't feel like I connect or identify with Mary Tyler Moore and Wilford Brimley. I think it's really great to know of certain celebrity diabetics...but how many people outside the diabetic community know they have diabetes? I would venture to say the numbers would be pretty low.

That brings up a whole other ordeal though...what will people think when you talk about your diabetes. I know on a personal level that you can get a variety of reactions: pity or they think you're sick all the time. So, again, I completely understand wanting to keep an understated profile about your diabetes. But, I really wish someone would put the fear behind them and try to make a change.

There are a slew of non-profits raising money for diabetes research and for diabetics...but how many can you recall? JDRF and ADA, right? I know these organizations were formed for the right reasons, but they've been overcome with internal politics. Not to say they're invalid organizations, but what about the others? What would it be like to be in a world with all the diabetes organizations working together? I'd love to see that. I'd also like to see a cure for diabetes. Oh so badly. It's selfish, yes, but I know a cure is possible, I'd like to see us fighting...fighting not to be overtaken by this pain in the ass disease and fighting to find a cure ASAP...I'm tired of the saying it'll be cured within the next 10 they've said for the last 20 years.

I know the Jonas brother with Type 1 spoke in Congress. That's incredibly brave of him. While I do not at all blame him, he's dedicating his time and efforts into performing. How awesome would it be to have a celebrity not just put their face with an organization, but to really delve into the ins and outs of whatever organization they chose?

Who knows, maybe more of a celebrity presence wouldn't help at all. I honestly think it would, but I've been wrong before, it could happen again.

Please don't interpret this as we cannot accomplish anything without celebrity recognition, I just feel it would be greatly beneficial for our cause.