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.

Friday, October 23, 2009

Do You Have What It Takes? My Dr Thinks I Do, Woo Hoo!

So, while I don't know exactly what the insurance companies think is "enough" to qualify for a CGMS, I've been told I've got it. While my endo is not my insurance company, it's a good sign! Glad to see my lows are getting me something. There's some saying about there's always some good to be seen in every bad/negative situation...right?

My 2 hour endo appointment yesterday brought more than the CGMS news, it also included:

- A 1 hour wait for my doctor b/c the patient before me couldn't figure out how to adjust his insulin shots to CST from PST. Thankfully, they got it all figured out. The other reason was that her husband was late, her nanny didn't know where to go and her sister was her kids couldn't get to where they needed to be, so she was dealing with family drama. I felt bad, that had to be incredibly frustrating for her...I'm just happy I brought a book!

- New medication!!!! Who wouldn't be excited about that, right? Yep, I'm 23 and taking cholesterol medication. So, now, not only do the majority of the diabetes commercials with senior citizens not represent me, the cholesterol med commercials don't either. It's not a big deal, and sort of just makes me feel old.

- More medication!!! Even MORE exciting than a new medication! I'm "weaning" myself onto Neurontin. Last night I moved up from 300mg to 600mg. Within an hour of taking it I felt drunk, drowsy and incredibly out of it. The nice thing about it was I slept like a rock. Neurontin is a pretty standard treatment for diabetic neuropathy, from what I understand, but reading about it's other uses is pretty funny. Wikipedia lays it out also helps alcoholics, meth and coke addicts break their addictions and prevents seizures. Perhaps this means I'm being protected from a drug and alcohol addiction and ever having a seizure? Yes? Maybe?

- Some changes in my basal rates and a discussion about needing to change my schedule. Hopefully the slight changes will help until my schedule gets worked out. :)

- An approval (not that I needed one, but it was nice to know her thoughts) on trying to get into a nursing program. She thinks it's a great if only I could get my family to approve the idea...

- A 2 hour drive home. Bay Area traffic sucks.

Tuesday, October 20, 2009

Diabetes As A Disability?

I am a very stubborn person and hate being told I "can't". If you tell me I "can't" do something, unless I understand the rationale behind it, 9 times out of 10 I'll do it, or nearly kill myself trying. This mindset has allowed me to overcome adversity. But, I realize it can be unwise to follow this mantra at all times. As a diabetic I don't feel I'm any less capable than the rest of the world, but I realize I do have more things to keep in mind.

My school has three schedules to choose from: 8:30a-12:30p Tues-Sat, 1:00p-5:00p Tues-Sat or 5:30p-9:30p Mon-Fri. Each schedule is on its own curriculum. My work schedule is: Sun 11p-Mon 6a, Mon 11p-Tues 6a, Wed 6p-11p, Fri 6p-11p and Sat 7p-11p. While there are very few time crossovers, I also need sleep. I'm not saying I need 9-11 hrs sleep every night...or any night for that matter. But, my sleep schedule is non-existent right now, which takes a toll on my sugars. The basal rates on my pump are based on time and my activity at those times. My erratic schedule also means I depend on energy supplements and caffeine regularly...which also messes with my levels. Sometimes I'm at work at 3:45a and won't go to bed until 4p and some days I'm out like a rock at 3:45a and up at 6:15a. (I only use 3:45a because that's the current time...and I'm currently at work)

I don't want to say I'm disabled or allow diabetes to restrict what I do or don't do. But, at the same time I feel it is important to be aware of my health. My program is supposed to be 7/14/09-2/11/10, so not incredibly long. My first two months I didn't sleep much, though I wasn't working overnights-by mid-September it caught up with me and I was in bed for a week. Overnights give me longer hours, so I need to work them when they're available to me. I quit my second job the first part of October, in hopes of improving...thus far they are doing the opposite.

Last week the school's administrators asked to meet eith me. In our meeting they asked me to consider dropping out and re-entering when it would take less of a toll on my health.

The big question is: Is dropping out and putting the program on hold allowing diabetes to limit me or is it being health-conscious and wise?

How much do you allow diabetes to be a factor?

If I get a doctor's not I can take a leave of absence without losing my place in the program. But again, am I allowing myself to be disabled? Or is diabetes becoming a "crutch" to quit?

Would dropping/postponing be a wise decision or an excuse to get out of a challenge?

On one hand I just want to ignore my missed/off medication times, lack of sleep, stress, nerve pain (which only seems to be getting worse with less sleep and more stress) and screwy sugars. On the other hand I'm 23, I don't want my stubborness to compromise my future health.

It feels like a constant inner battle. School is just my main one right now, but diabetes as a disability is a tough topic.

How much contol does diabetes get to have?

Monday, October 19, 2009


While I've heard of the imperfections with the CGMS's, I still would LOVE to have one! My pump isn't perfect either, but I wouldn't dream of giving it up.

In December I'm eligible for a new pump. I'd also like to get a CGMS. BUT, from what I've been told, my insurance company will be looking for numerous readings in the 50s prior to approving coverage for a CGMS. I have a number of problems with this...

#1: The insurance companies will not approve a device that's proven to be a helpful tool for diabetics, unless they have enough complications. What constitutes "enough"? How much danger do I need to be in to warrant a useful tool?

#2: This encourages diabetics to put themselves at risk of having, a widely-known danger, lows. Let me tell you, as soon as the pump representative "unofficially" told me what the insurance company would be looking for, I adjusted my pump settings. Twice last weej I was stuck on a train with no food or juice (it's not allowed-though I frequently bring some anyway) with my sugars in the 40s.

#3: The insurance companies don't even cover a great deal of the pump or CGMS supplies. Even when I had "100% Rx coverage" it only covered about 30% of my pump supply order! I realize these products are expensive - but they're life-changing!

#4: If insurance companies are allowed to do this to diabetics - 1 - how much further will they be allowed to push us? 2 - what do they do to people with other medical issues?

#5: By not approving a proven aid in the management of an incredibly complicated disease, the insurance companies are PUNISHING those who have decent control of their sugars! If they were approving all diabetics with imperfect sugars, they'd be approving every single diabetic.

#6: The CGMS alerts for high sugars too! Why in the world aren't people with high A1c levels & multiple high readings allowed access?!?! It can help them too!

#7: Most insurance companies had even more restrictive regulations on CGMS approval just a year ago and only eased up when thousands of diabetics started and signed petitions. Why is it they will only change their policies when they're threatened with the idea of their injustice being publicized? It's infuriating!

I did absolutely nothing to get diabetes - I do not deserve to be punished for having it, nor do you!

Here's to hoping Christmas will not only bring a shiny new pump - but a CGMS too!

Saturday, October 17, 2009

Everyone's Got Their Own Take

It's hard, it can be scary, it's exhausting, it's anything but normal, it requires a lot of work, responsibility and dedication. Not only all that, but diabetes also requires you to be a constant student...learning all the time.

I would not wish diabetes on ANYONE. But, it most certainly brought about positive changes in my life. It's connected me with so many people I never would have had the opportunity to meetotherwise.

To me, the hardest part about living with never get a vacation, EVER.

The disease is not me, I will not be considered "diseased," it's not my's part of my life, I'm just like everyone else (unique and dealing with unique struggles) and while I may not have the health you have, I'm determined to make up what I'm lacking in health with spirit. Sometimes I lose focus with this idea, but always somehow find my way back.

As with any challenge in life, it's important to have a "take." When a football team takes the field to play, they have a plan. People with "chronic illnesses" need a plan too. Are you going to let the disease consume you, take over your life and drain the you who once was? Or are you going to stand up to the disease and fight it, make life changes for yourself and adapt to a new lifestyle and new perspective. Let me tell you, it can be hard not to crawl up into a ball and hide under the covers some days...and that's okay when it happens, just don't get stuck. If you watch Grey's Anatomy at all Meredith and Christina occasionally get the "dark and twisties"...if it's okay for them, it's okay for me. ...That's what I like to tell my self at least.

For a long time I had a blog, but it wasn't focused on diabetes alone. I still intend on keeping the other blog going, once some things clear up, but I'd like to have a focused one too. While I don't let diabetes dictate my life (most days), I'd be lying if I tried to say diabetes was not a HUGE part of my life. As a Type 1 pumper I've got a device attached 24/7, if the device weren't enough of a reminder, I count the carbs in every food that passes my face, see the scars on my fingers, look in my purse and see my glucometer, insulin & emergency pump supplies. Diabetes is everpresent. Like the younger, annoying step-sibling you never asked for, but still came. I am grateful for some of the changes that I've made since being diagnosed, in a lot of ways diabetes has been a blessing...but a lot of things would be easier without it.

Anyway, this is me shooting for 100...right now I'm 193, definitely not on target, but I did eat not too long ago.