Another Post on What It’s Like (unedited)

Part of the reason I’ve been gone so long has been because I’ve been focusing a lot of my energy on losing weight and getting fit, and I’ve been blogging about that over on tumblr. But I kind of accidentally wrote a rare long tumblr post today that fits better over here, with diabetes. So I’m copypasta-ing it over here so that more people who actually find it relevant will see and read and hopefully gain something from it. 

 

I REALLY hope my new Endocrinologist can help me tomorrow!

This is a really long post, and it’s about an issue most of you fitness gurus don’t even have to deal with, but it’s relatable to other problems you may have if you suffer from depression, asthma, anxiety, or any other chronic illness that makes you feel awful a good part of the time. 

(An endocrinologist specializes in hormone related illnesses, which include diabetes, which I have, type 1). 

Let me tell you guys a little bit about how I feel when my blood sugar is out of whack. 

Lately I have been running way too high, higher than normal. A normal blood glucose range is 80-120, or 80-140 if you have type 1 diabetes. 

My particular blood sugars have been running about 160-400. 

This makes you feel all kinds of different ways, but the majority of the ways are exausted, lathargic, irritated, sore, pissed, angry, sleepy, heavy, headachey, bleh, hit by a truck, can I please just go to sleep now, get the fuck out of my way i need some water, why do I have to pee so much, why won’t this goddamn headache go away, why do my legs hurt I haven’t worked out in days, where is the saltiest snack I can find, where is the sweetest snack I can find, why am I so fucking thirsty, why did I just go through two liters of diet coke and a gallon of water, where the fuck is the milk? Oh yeah I don’t eat dairy, so I’ll go out and buy some milk ways. 

And yes. Sorry mom, grandma, dad, aunt, whoever is reading this, but when your blood sugar is 300 when you wake up at 6:30 am, after having an excellent reading of 84 when you went to sleep, then it makes you curse. It makes you say the F word and not give to f words about who hears you or what they think of you. 

I am not exactly sure how it got to this point. I’m sure it was a combination of going off my insulin pump, of constantly running out of and not being able to afford insulin and the stress that comes with that, followed by an ER visit which  no, I did not tell my parents or facebook or even my friends about because I didn’t want anyone to worry about me. 

Diabetes is similar to obesity in that everyone everywhere, your family, your doctors, medical science in general, tells you that it is YOUR FAULT YOU GOT THIS WAY. HOW COULD YOU HAVE DONE THIS TO YOURSELF. YOU ARE NOW GOING TO HAVE A HEART ATTACK, LOSE A LEG, GO BLIND, AND LOSE A KIDNEY SIMULTANEOUSLY. And you feel shame and grief and if you are a perfectionist like I am, you give up. 

Yep, in a lot of ways my diabetes struggles have been similar to my weight struggles. Up and down. Good and bad. Get the A1C (a test that shows an average of your blood sugars over the last 3 months) under 8 and then it pops back up to 9 before you know it. Throw in the added bonus that because of changing insurance I haven’t seen an endo in over a year, and voila! My A1C is nearly 10 (it should be under 8, for those non-diabetic knowing people who might have taken the time to read this long and ranty post. Thanks, btw). 

So if not feeling like doing ANYTHING (including get out of bed to find my meter and insulin and actually treat myself) and feeling like this is all my own fault and not knowing what else to do to fix it is any indicator of my level of anxiety going into this appointment with a new doctor tomorrow, well, take that level and multiply it by at least 5. 

It’s kind of strange though, to be anxious for an actual reason. It’s not an empty feeling of anxiety for no reason like it is when I suffer from attacks. It’s just a general feeling of, I really want to get this over with and I better either feel confident in myself and my doctor when I come out, or be prepared to find another doctor because God knows I am not tolerating anyone who makes me feel worse about my self care or myself. I’ve been working really hard to eat right and exercise and test my blood sugar more often and I will not let those accomplishments get thrown out the window for whatever this lady has to say about me. (I have no indication that this will even occur, but it is what I am terrified of: a long lecture about how I’m destroying my body and if I could just do better everything will be alright. Save it. I am fully aware). 

I guess in the end I know that around 10:30 tomorrow morning I will either have some sort of plan of action to go from here. Because in spite of what may happen in the long term, I know I can’t go on living like this in the present. I need to feel good and be myself for my job. I can legitimately blame some of my struggles there on how I feel, especially early in the morning. I need to feel good in order to continue to work out and meet my goals of running a 5k in less than a month and riding 150 miles on a bike in less than six months. And I need to feel better just to feel better about myself. I know I can do this. I also know I need support. I need to not let my attitudes about the american health care system, or doctors in general, or the way diabetics are treated get in the way of having an open mind and of ultimately helping myself. 

Because I Can Do This. And I know I can, and giving up is not an option. 

Not now, not ever. 

 

Today is a new day.

Today is a new day. The first day of a new month. The first day of a new start.

Every day is a new day. Every day is a gift. Especially when you have diabetes.

My birthday is next week. I will be celebrating another year of being alive. Another year of living. Another year of living with diabetes.

 

It’s never easy. It’s never fun. Most of this year I spent wanting to give up. Wanting to give in. Wanting to let go.

 

I won’t do it anymore.

I can’t do it anymore.

I am the only one in control of my life. This is me. This is me saying:

 

I can do this.

No one else can, but I can.

No Big Deal.

This post is part of D-Blog day 2012 .

 Every November, for four years now, I have participated in Diabetes Awareness Month. Similar to the ever-popular Breast Cancer Awareness that October celebrates (about which I continue to have mixed feelings), it is a month dedicated to raising awareness and support for people living with diabetes and organizations searching to find better treatments or a cure.

This year I’ve been reflecting on how those around me view my diabetes. I talk about it a lot, probably more than a majority of people living with “the D” do. Most people around me are aware that I live with Type 1 diabetes. My coworkers, members of my Weight Watchers meetings, those who I attend church with, and even sometimes people in my classes are all aware that I have diabetes. I make a point to inform my supervisors and teachers that I do, in fact, live with diabetes, use an insulin pump (and a CGMS when I have it). The reasoning behind this is simple: in any medical emergency when it may be pertinent that the medical staff knows I have diabetes, these people would be able to inform them of this. It also, more times than not, comes out on a first date. Whether discussing “baggage” we would bring to the potential relationship, or discussing what I want to be when I “grow up” (a diabetes educator), it slips out somehow.

During each of these times, I take a few seconds to explain that I have type 1, use insulin, and have had it for years. After that, I usually blow it off. “It’s no big deal; I’ve got it under control.” “I’ve been doing it for fourteen years; I have a handle on it by now.” I have used both of these sentences a lot when it comes to telling supervisors, teachers, and even dates about diabetes.

“It’s no big deal.”

I say it so often I’ve convinced myself. It’s really no big deal. You don’t need to pay attention to it, because it’s no big deal.

It’s a big fat freaking lie.

It’s a huge deal. It affects every aspect of my life. It affects my day to day activities, my mood, my attitude, and my body. Losing weight is hard anyway, but it’s harder with diabetes. Blood sugar too low? Can’t work out. Blood sugar really low? Consume more calories. Blood sugar too high? Can’t work out! It’s a vicious cycle, and it makes life incredibly difficult. You have to get into a distinct pattern to trick your body into knowing that you will work out at that time each day, and adjust your insulin just so.

It’s a lot of work.

Not to mention every bit of food affects your numbers differently. Oatmeal and cold cereal. Similar enough to a person without diabetes. It’s cereal. (Super Cereal). But to me, it’s a different effect on my blood sugar. To me, I see numbers, not food. I see a syringe or a dial on a pump. I see a meter reading. I don’t see food.

And then there’s the hormone factor. Women, we get the worst of it. And while I may be well past puberty, a monthly cycle is nothing to shrug off when it comes to blood sugars. Crazy stuff happens, no matter what time of the month it is (sorry boys, facts are hard but true).

Then there are the consequences of the high blood sugar readings. I don’t even want to get into the potential complications. Kidney damage. Eye damage. Heart attacks. Loss of feeling in extremities. Luckily I’ve dealt with a very small amount of this after 14 years, but it seems, no matter how hard I work at taking care of myself, there they are, looming.

It’s enough to make you want to quit trying.

But we tell people what we want to believe. We want them to know we’ve got this, that we can do this. But usually, it takes constant self reminders, and often times, reminders outside myself, from my family, my friends, and my online support system, that I can do this. That we can do this, together. Life with diabetes doesn’t have to be a life filled with hardship. Yes, we are forced to learn dedication and hard work and constant defeat, but we can still live long, healthy lives.

Isn’t that the ultimate goal? Even if your life doesn’t end up at the average age of a person without diabetes, to live it full, to have everything everyone else can have? To eat our cake on our birthdays and diagnosis anniversaries, to find love, get married, and have children if we so choose, or to do none of these things if we choose not to!

Diabetes isn’t a death sentence. It is a life sentence, but it can be good. People with diabetes can live extremely healthy, active lives. And while the work it requires can become overwhelming, it also can be rewarding. Friendships and opportunities that I’ve made and had because I have diabetes and because I blog about it are things that I will cherish forever.

Worth it? Maybe not. If we had a choice, none of us would choose this life.

But those things make it infinitely better.

Resurrection

Sarahndipity is going to be resurrected.  There are times when support is just needed, and turning to the internet masses seems to be a way to make it happen.

It’s Diabetes awareness month, of course, another year of awesomeness, awareness, and advocacy. I love it. I was also diagnosed in November (14 years ago yesterday). Three years ago I started insulin pump therapy in November. It’s a great month to not only get back to blogging, but to work to get diabetes back on track, pump or no pump (though I am back on my pump).

(Note: this post will contain tiny fragments that may not make sense but will be expanded on later).

In my blog vacation I realized that I had forgotten how important it can be. Even if just a few people read your blog, it can be an outlet to your support system. Today at my weight watchers meeting, a woman mentioned she has been blogging on her journey, and has lost a total of 35 lbs. She started just before I did and she’s 15 lbs ahead of me! Not that I am stressing over a few pounds. I have lost between 1-2 lbs a week on average so I am perfectly happy with my rate of loss. But it still got me remembering how much blogging can help – taking care of diabetes – taking care of yourself – to have a group of people who “get it” looking out for you.

So here I am. I’ve been working on two things health-related lately: Eating better using the Weight Watchers plan, and controlling my diabetes using multiple daily injections as opposed to insulin pump therapy. Financially, things have been difficult lately, bringing on the change. It should all work out in the next few months, and as of today I’m back on the pump and very glad, though I’m not sure how long it will last.

In conclusion, the point was that keeping connected with the Diabetes Online community, weather it is through blogging and reading blogs, tweeting, or facebook, really does help. And when our diabetes is in control, the rest of our health can fall into place. I am feeling great and glad to be back, out of denial, out of depression, out of the darkness and into the light.*

DOC Light.

*to: mom

(South Park ruined Easter: http://www.southparkstudios.com/clips/151179/cartman-crucified)

Progress Report

 

So far I have lost just under 16 lbs and am at over 5% body weight loss. My next goal is to lose 16 more lbs by December 4th. That would put me at a total of 11.5% body weight loss. It’s about 2 lbs a week until then. If I keep that up, I should be at 40 lbs lost by New Years.

Getting back into the Groove.

It’s always tough to get back into blogging and being an active part of the community  Diabetes Online Community, or DOC) when you’ve been gone for a while.

For me it’s something I need to do, without a doubt. Diabetes related, I’ve been taking injections (instead of using my insulin pump) for a few weeks now. It hasn’t been the easiest road. I’m still waking up with extremely high numbers (over 250) and dealing with lows, but it’s nothing I haven’t been through before. Lots of testing. Lots of adjusting. Lots of feeling like crap. Knowing it will be worth it eventually, when I feel ok again. When I realize how much money I’m saving on pump supplies. But yes, I miss my pump. I will have it back eventually. I have good insurance that covers a lot of the cost, but I’m so behind on my Animas payments that I can’t afford the monthly payments I’ve agreed on with them so they’ll send out new supplies.

That being said, injections, while annoying, do have me feeling a bit free-er. After nearly three years with that thing attached to me at all times, though I was completely used it it, it feels nice not to have to keep track of it. It’s definitely not forever though. I will be a pumper again soon. And hopefully a CGM user even sooner. I think injections would be easier to figure out if I had some continuous glucose monitoring assistance.

I need to get back to my doctor. When I first saw my  new doctor, I loved her. But we didn’t actually do anything at the appointment. She took some blood and had me schedule another appointment, which I promptly slept though – dealing with the other D at that time. I need to formulate a plan with her. See what she thinks about my attempt to go injection. Get new humalog and lantus scripts. At least feel a little more in control. Get a script for a box of syringes instead of buying them by the package – long needles – 2 unit measurements – not ideal. Hard to dose at half a unit when you have a 2 unit measured syringe.

But all in all things are looking good. Weight loss continues to progress (as far as I know, weigh in tomorrow morning. Weight Watchers™ is awesome! Post on it coming soon!), while financially I’m still struggling to keep my head over water, I am at the very least on my own, working 40 hours a week, keeping a roof over my head, my electricity on, gas in my car, and myself and my kitties fed (with a little help from my parents on occasion). And that’s good, right?

Somehow I still feel out of control of my own life. What on earth is the solution? Is accepting that you’re out of control just part of growing up? Part of a natural maturation cycle? Someone today asked if I was happy. I am happy. I don’t feel like I have “arrived,” or like I am “there” as far as being an adult or being who I want to be, but I feel like I am learning what is and isn’t in my control. What I can and can’t can’t change. How all you can do is all you can do. Ever since I started seriously taking care of my diabetes (about when I started this blog, summer of 2009), that has been my motto. Change the things you can and don’t stress about the things you can’t change. I don’t know why it took me so long to get to the point of applying that philosophy to the rest of my life.

But I’m there now.

Why I want to lose weight

I’ve battled with this for a long time.

I have really, really, really been working on myself and those around me to accept myself the way I am and not worry about feeling like a failure because I have gained so much weight and continue to gain weight. I have really, really been trying to accept that as fact and move on.

But I can’t do it anymore. Enough was enough.

Yes, it’s a health issue. I was (still am nearly) over 100 lbs above ideal weight (according to BMI, which is crap, but for this purpose). That’s not healthy. Not healthy for diabetics or healthy people.

I’m already battling insulin resistance. Who wants double diabetes?

But it’s more than that. I’ve always been a live in the moment kinda girl. Long term scares me so I continue to not think about it. Long term results are not good motivation for me. Accepted fact about myself. Long term is overwhelming. Long term stresses me out. Forget long term.

But what about short term? What about my self esteem in the bucket? What about the fact that I constantly compare myself to those around me and allow my weight to make me feel badly about myself? What about that?

While I hate – really hate – that it comes down to cosmetic reasons that I joined Weight Watchers™, it does. Sort of.

Self confidence is something women either develop or don’t in their younger years. Most don’t. And I didn’t. I don’t blame my mom, but she battled this issue herself for many years. All though my preteen and teen years, my mother was fighting her own battle. We never talked about it. I didn’t even notice it really. Not until she underwent some big changes her self in recent months. She blogs about that, among other things. You should read it.

No, really, I can’t blame my mother. I can’t blame anyone. It was in the cards for me. A failed almost-engagement. A failed economy. A failed attempt at a career. Failure felt like it was hitting me from every angle. And I ate. And I slept. And that’s all I did.

No, there comes a time in every journey, when you shape up or ship out. I moved out in February. Got a decent (if annoying enough) job, and support myself (for the most part). I pay my rent and utilities and take care of my cats. Super self esteem boost right there. But it’s a struggle. I’ve not been officially on my own for even 8 months yet. I can’t blame myself for struggling. Again, part of life.

Confidence is the key to everything, I think. The key to diabetes management. The key to self worth. The key to self esteem. The key to success, professionally and personally.  If weight loss, diabetes control, or just feeling better in general physically, contributes to my own confidence level, then the cosmetic, social, or health reasons become only secondary. Primarily I’m doing this for me.

Don’t do it for me. I’ve heard that so many times from a few different people. I want to shout, “I’M NOT! IT’S FINALLY FOR ME!”  I read a quote on Pinterest – it’s about your 20′s being your selfish years. I can testify. You have to be selfish in your 20′s, especially if you’re single and chlidless. Otherwise, you don’t have another reason to live. No one else to take care of. You have to make decisions that make you happy – there’s really no one else to make happy.

Losing weight can be selfish. Diabetes control can be selfish. Not doing these things can also be selfish and hurt those around you. But while I love my family and friends with all my heart, quite honestly, my life is about me right now. And that’s why I’m doing this.

When life throws you a swift kick in the eyeballs….

Eyes. Diabetes can have multiple side effects, whether well controlled or not, but more likely if not well controlled. And one major issue is eyes. Diabetic retinopathy can lead to blindness and a whole host of other problems. Needless to say, when my eyes ceased functioning normally for over 30 minutes while I was working yesterday, my only thought was, “I’ve got to get to a doctor.” 

I was just going along normally, taking phone calls, working on the computer, when all of a sudden I couldn’t see. Things weren’t dark, but everything was bright. I could fight it and squint and see the computer out of my right eye only, so I faked my way though the rest of the call (it was a long one, 30 minutes) and informed a supervisor that I was leaving to go to the doctor. There was no question here. Diabetic eyes are not something to be messed with. 

By the time I was heading out the door, I could see again, mostly. I was still a little disoriented but didn’t feel bad other than freaking out due to not being able to see for 30 minutes. I decided I would drive myself to the doctor since it was just down the street from my work. It turned out to be a horrible idea. The sight problems returned when I was just a few blocks from the clinic. 

I went inside and registered, and just as I suspected the doctor decided that she didn’t have the tools to evaluate me and sent me to the ER. I was NOT a fan of this idea, and it turned out to be the huge ordeal that I thought it would be. After waiting almost five hours in the waiting area, I finally was sent back to a bed. at this point it was very much midnight. 

One cute male nurse (who was my age and swore he knew me!!), nice doctor, and CT scan later, I declined to have my spine stabbed to test for brain pressure, and without further eye incident was diagnosed with ocular migraines (at this point my head was KILLING me). It sucks to have another medical issue to deal with, but it is also a VERY good thing that it wasn’t a sight issue – just a brain issue. (That’s all, right?). 

Point: I’ve been putting diabetes on the back burner for a while, dealing with the “other D” of depression, and lately focusing on weight watchers, but something came along to kick me in the rear and remind me that taking care of my diabetes needs to be part of who I am. I get overwhelmed easily and focusing on one thing at a time is usually all I can handle. When I was thinking about the last few months and how my blood glucose levels have been and how I had a perfect eye exam in March and how these things tend to come out of the blue, I realized that I can’t wait any longer to take care of myself – in all ways. There’s no excuse to be eating healthier and ignoring diabetes, because those things go hand in hand. 

I hope and pray that my readers with diabetes don’t wait for a swift kick in the eyeballs or kidneys or circulatory system in order to get themselves back on track. It’s not a fun thing to deal with complications, and it just adds to the massive amounts of guilt we feel as persons with diabetes – in some cases, feeling like having this disease is our fault, or that imperfect numbers are also completely under our control. All we can do is all we can do. I know I’m not doing all I can do. But it’s time to step back up, rejoin the community, and do everything I possibly can to make sure I have a long, happy life and have a good impact on those around me. 

That’s what this is all about, right? 

(Anyone Perfect Must Be Lying)…Combating Disease Denial as an Adult

The thing about living with a disease that requires your attention every moment of every day is that it gets annoying. 

The thing about participating in a community online that focuses on said disease is that sometimes you just don’t want to think about the fact that you have that disease. 

I am not blaming the DOC on the denial I’m currently experiencing. Nor am I blaming my involvement in the DOC. However, when you attempt to make diabetes the forefront of your life, it tends to drive you insane. 

I know I don’t have to explain this to anyone reading this. It’s just that it’s gotten out of hand. Yesterday, I certainly did not feel like getting out of bed all day. I have nothing to blame this on, except maybe sleeping on my parent’s couch last night, and the fact that my blood sugar remained steadily in the 280′s all day. 

Now I’m not positive about that level, but the two times I tested it, that’s what it was. I still think I’d be more apt to remain under control if insurance would fully cover damn continuous glucose monitoring sensors, but since they do not and I cannot afford them then they will just have to have fun covering my complications down the line. 

But you can’t blame everything on insurance, or lack thereof, or lack of funding, some of it is just darn lack of self motivation. And you can’t blame yourself for that either. Today I was walking in my kitchen, eating beanie weenies (don’t ask me why) and I thought, “Oh yeah, diabetes.” As if it had totally slipped my mind. As if I hadn’t had a chronic illness for 13 years. 

Why, after 13 years, after I finally got past the teen-and-college denial years, am I still dealing with this? I guess it’s just a general thing. We want to think of ourselves as “normal.” And for the most part, I am normal. I am a recent college grad working a sales job because it’s all I could find and struggling to make ends meet. I am a typical single 25 year old wondering if my prince will ever come. In these ways, and several more, I am typical. I am average. I am “normal.” 

Diabetes doesn’t fit into the “normal” life I tell myself I live in order to keep reality in check. “Don’t worry that you had to pay a 20 dollar late rent fee, most people your age have to do that from time to time.” “Don’t worry that you had to stay up all night after you drank three beers at the bar, most people your age have to make sure they’re sober before they sleep so their blood sugars don’t tank.” Wait, no. That’s not normal at all. I want to be able to pass out after a night out and wake up with an alcohol hangover, not a low blood sugar hangover. 

But honestly, I digress. I want to be encouraging. I want everyone who reads my blog (the few of you that are left after my hiatus) to be motivated, to have the “you can do this” attitude. 

I won’t lie, I am making changes. I am inviting people into my life who I hope and pray will keep me accountable and motivated. But I don’t know. This isn’t about looking better. This isn’t even about health down the road. If I am one thing, it is a live in the moment and don’t worry about tomorrow kind of person (which can be a blessing and a curse, because that also means impulsive). Part of how I feel is diabetes, and part is body fat ratio. But to be honest, I only care about one thing. 

It’s that… I’m 25. I don’t want to feel too old to walk up my apartment stairs anymore. 

The Return

Look for the return of updates and a re-vamped site tomorrow.

It’s one of those things. Sometimes you just need a break. Other times, you need to release.

I’m in a better place now, d- and other d- wise. And I’m excited to share my adventures, good and bad, with you guys. I have plenty to talk about and even more that I want to hear from you about.

 

Other things to enjoy:

My return to twitter (though I’ll be working through #dsma every week, sadly).

Like my blog on facebook 

 

See you tomorrow