Monday, November 14, 2016

I'll Always Be There When You Wake

On July 23, 2011, I was diagnosed with Type 1 diabetes. I was uninsured. I struggled to pay for insulin, I reused needles even after they had dulled and left bruises on my skin. I ended up with $80,000 in medical debt. You read that correctly. $80,000. In less than a year, the Affordable Health Care Act would go into effect. That following November, I enrolled for 2013. I was low income at the time-working as a server in a high end restaurant for the first three months, unemployed for one, then started at a job where I made $12 and hour, then given a raise for $14 an hour. This was $3 above the “Living Wage” in my area, however, that living wage doesn’t include the rising costs of insulin, which, at the time, were $380 a vial. Per month. For better understanding of Type 1 diabetes, I have to take a certain amount of insulin for every carbohydrate I put in my body. Carbohydrates are macronutrients, and are only not found in proteins or fat. That means, when I eat broccoli, carrots, cherries, strawberries, pasta, popcorn, soup, sushi rolls, salads, potatoes, or pizza, I have to take insulin to counter act these foods turning into acid in my body. (The reason I chose to list those foods is because they are my favorites besides bacon and pickles which are free foods with no carbs!) By 2015, I found an insurance plan that fit my needs. The deductible was high, but I had finished my degree and was managing a bar that more than paid the bills, and working a part time job that allowed me to be off my feet, while I recovered from knee surgery. That job is now my career and I am able to be out of the service industry for good. I can pay for my health care, my insulin, my seven doctors that keep me healthy, my insulin pump, my supplies, my test strips, my lancets, the AAA batteries that keep my pump operating, healthy food to put in my body, glucose tabs and juice boxes for when my blood sugar dips, my continuous glucose monitor that shows my endocrinologist trends on a graph of what my blood sugar is doing so he can make changes on a weekly basis, and to pay for my technology and internet service to keep me connected, sane, and mindful. I pay over $10,000 a year for all of this crap that I didn’t ask for nor did I do it to myself. Diabetes (all types) are only one example of a chronic illness that 117 Million Americans live with today. 7 out of 10 deaths are attributed to chronic illness. I’ll let that sink in for a minute.
Something that ran President Elect Donald Trump’s campaign was his call for a complete repeal of the Affordable Health Care Act, or what has been better known to be called Obamacare. Now, he is saying he will replace it. Coinciding with his reform. I don’t know which Donald to believe day in or day out. I am hoping that they will hold insurance companies responsible to not say “no” to pre-existing conditions. I know health care is costly. And what is going on now is not as an effective plan as we could have.

When I woke up Wednesday and heard the news about President Elect Donald Trump, I cried. I wanted to call into work. I was afraid for people of color, for women, the LGBTQIA, for America, and for mine and my many, many, many friends and family with chronic illness and pre-existing conditions. My boss assured I would be okay and we could always figure it out, even if I had to join our group plan. But, it left me wondering: what about everyone else? I have this saying about myself. “In a sink or swim situation; in a fight or die problem; I am proud to be a strong swimmer and an amazing fighter.” I will continue to swim and fight and advocate for everyone until I have no voice and then I will learn sign language to keep going until they cut off my arms and will write with my feet, unless complications from diabetes and a lack of being able to care for myself takes all I have left. I just pray we don’t come down to that. I pray for you, and me, and all the people who are covered. 

Monday, October 3, 2016

Cause You've Got All My Attention, I Won't Lie, You're Tearing Me Up

I have incredibly lucid dreams. Often I can smell, see my hands, wake myself up, and even feel things that are happening in the dream. It's a wild ride on any given night. It used to be that all I had were nightmares. That's not the case (most of the time) now. I used to write horror stories based off of my dreams. In 2013, they stopped being so scary as I learned how to re-direct them. Occasionally, I still wake up screaming or crying. But, most nights, they are just intense and I think about them for days at a time.

Friday night, I had a dream I owned a lioness. She was large, and I was living in the house I grew up in. She was sweet, and soft, and smelled like laundry detergent. I named her Leah. She often circled me in the dream, showing off her golden fur and curling her tail around my legs. But, randomly, she would attack me. The first time Leah clasped her jaw around my shoulder, I was scared and I could feel her breath on my back and the weight of her body collapsing on me on the floor of our dining room. The second time Leah attacked me, I realized she just needed to be soothed. So, while the people in my household screamed, I relaxed and petted her, shushing her in a calm voice. She quickly let go and nuzzled her nose into my ear, purring and begging for attention. The third time she attacked, I immediately soothed her. She took a little longer to calm down, but eventually she did. It was then I noticed she was peeing a little bit before she attacked. My lioness, had a UTI. I'm not even sure lions can get UTI's. But, that's what was upsetting Leah. She was in pain and lashed out in the best way my domesticated lion could: she acted like a beast. I soon woke up, but I could still sense her breath, smelled her lavender laundry soap scent, I could feel her soft fur, and see the lovely oranges that made up her coloring.

I thought about it for most of the morning, and even googled some of the meanings. Some of them applied, but really, all I thought Leah reminded me of was diabetes.

I hate the word control when it comes to diabetes. Some times, no matter how hard I do everything right, I have no control. I can manage some times and that feels like a more accurate description. Just as I could never control a domesticated lion, I can learn to soothe and figure out what the problem is by breaking the beast apart. Some times, it is a scary and terrifying monstrosity. Some times it is a frustrating fiend. Some times, I have a "room" of people stipulating what I should be doing to get the situation handled. Occasionally, it takes me taking a deep breath and relaxing to relax my wild, feral, titan. Other times, I rely on my devices, the Diabetes Online Community, and my plethora of doctors to know how to wrestle the giant.

I hear a lot, "it could be worse." This may be the worst thing to say to someone with any kind of chronic disease. Not that I would take cancer: I have seen too often, lately, what cancer is capable of. But if someone told you they had cancer, would you say, "It could be worse?"

After all, unlike my time with Leah the Lion, I am never waking up from this dream.

Thursday, May 19, 2016

So thanks for making me a fighter

Day 4! More! More! More!

Click for the The Healthcare Experience - Thursday 5/19 Link List.
Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What's your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

As I said in yesterday's blog,  I have a great deal of experience with doctors. I feel like I see the doctors I do because I appreciate them for something different. If I wasn't satisfied with my doctors, I would go elsewhere. You know what that's called? PRIVILEGE. Not everyone has it. But, I digress.

My biggest gripes with my healthcare team isn't my Endo. It's his stupid staff. When I started there, he had an AMAZING staff. They always got back to you the same day and were so friendly; even though I only saw them every three months, they always remembered me. There was even a familiar face of a sweet girl I went to school with as one of his nurses. Something happened, though. And I don't know what. But, I started seeing overturn. The only person that is still there from when i started five years ago (other than the two main doctors in the practice) is the beautiful Medtronic rep. No surprise there: Medtronic has AMAZING people working there. My Endo's assistant doesn't understand diabetes devices or that I need new supplies for my pump every three months. His nurse asked me in my last visit if I was still taking Contour Next Strips. Besides sounding hard to digest, it just baffled me that she didn't know what he was giving me. They need some education in that office. My doctor is so wonderful and advocates for me in ways that I could never imagine a physician doing. He even handed me tissues and counseled me through my divorce. He was on his way to the airport to get on a flight to lecture in Boston when  my denial came in. He almost missed his flight to write my appeal letter. And I'm not special. He's a great doctor and would do it for his other patients, I'm sure. But damn, his office staff sucks.

I wish they would stop asking if I was taking test strips orally. I wish they would do as much research as my boyfriend has done on diabetes. I wish they were friendlier and returned calls within 24 hours. My doctor set aside samples of Lantus in case anything happened to my pump. I got to the office two minutes after five and the nurse was getting on the elevator. I asked her to just grab the Lantus out of the fridge. SHE ROLLED HER EYES AT ME. So I stuck my foot in the elevator door and wouldn't let it shut. (Eye rolling drives me bonkers, btw.)

Health insurance companies? HAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHA. What a joke. I go through a denial before the approve anything. Which I think is cute. I have learned that I will get what I want if my doctor and I fight for it. They never say no. We just give them a better reason to say yes. I get it. It's expensive for them to provide the better product. It's more expensive for me, too. But you know what's even more expensive? Ketoacidosis. Hospital stays. Losing a limb. Comas. MY DAMN LIFE. It's all a business, I understand. But it's not my business. My business is making sure I get what I need to take care of myself.

On my Health care wish list? A cure.

Wednesday, May 18, 2016

Always Something There To Remind Me

Day Three...look at Me!

Click for the Language and Diabetes - Wednesday 5/18 Link List.
There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I'm willing to bet we've all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don't care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let's explore the power of words, but please remember to keep things respectful.

I am a diabetic who tests my blood sugar. And I've never thought about it before. I use the term PWD (Person With Diabetes) because it's easier to type. I read this today. And I thought it was interesting. Mostly, because I really had NEVER thought about it before. I don't want to be seen as just a diabetic. I want to be seen as an intelligent, well rounded woman. But part of that intelligence is because of diabetes.  

Let's back up to 2010 and before. I have played soccer since I was three. But until around 2011, I never exercised outside of that. I ate whatever I wanted because it seemed like it tasted good. I didn't know shit about nutrition. And I mean nothing. I would have told you corn was a healthy vegetable. At my heaviest, I weighed in at 204 pounds. Bulimia helped with that one. I made a lot of generalizations about diseases and health because I didn't need to look stuff up. If I heard it once, it was probably true. I was probably a 6 pack a day Coca Cola drinker. Sweets were never my thing other than that. But, man potato chips and onion dip were such a relief any time of the day. I ate anything microwaved, and I would say it was probably about 50% of my diet, the other eating out. The activities I enjoyed were sitting on the couch, watching television, drinking with friends, sleeping, occasional writing, eating, and spending as much money as I didn't have. I rarely saw a doctor and it didn't even occur to me to care. Besides, if they said I would need blood work or a shot, they weren’t going to get it. I passed up meningitis vaccinations and a tuberculosis  test in high school to avoid the needles.

I spent a year in misdiagnosis. From August of 2010 to July of 2011, I was a type 2 diabetic, taking Metformin, with tingly hands, who was thirsty all of the time, peed a lot more of the time, and lost ninety pounds and LOOKED phenomenal in a bikini. Was I eating less crap? YEA! Was I exercising a little more than I used to? YEA! Therefore, I knew everything I needed to know. I was doing everything right. I was reversing MY diabetes!

July 23, 2011, this all changed. I got an early Saturday morning call from my endocrinologist saying that my a1c was in the 18 range and I needed to go to the ER immediately and get insulin. Then, on Monday he had set a nine o’clock appointment for me to come in and talk about our course of action. So, I did. And I was terrified. On Monday, after two days of MDI’s, I hauled myself into my Endo’s office. He set me up with a nutritionist and talked about eventual insulin pumps, a personal trainer and a slew of doctor’s I would need to start seeing.

The nutritionist blew my mind! Did you know that drive thru food is terrible for you!? And frozen meals have little-to-no nutrients because of all of the preservatives? What about how your body interprets soda and juice the same way? Or that you should have at least 35 minutes of continual exercise three to four times a week? How about that pizza has more carbohydrates in it than just the bread? Or that everything has carbohydrates except meat, cheese and fat? Yea! Me neither! I see her twice a year for a refresher of all the things I forget.

Now, exercise has become a part of my life. I eat what I crave, but also what I need. Dinner is usually my healthiest meal. Although, now that I eat breakfast every day, breakfast is a close contender. My favorite vegetable is between raw broccoli or cooked Brussel sprouts. I am 5’5 and I weighed in at 151 at my last doctor appointment last week (I don’t own a scale at home because I would focus on that as much as my CGM graph.) If I have a question, I look it up or ask someone that knows because I know firsthand how annoying it is when people think they know something about Diabetes and they are talking out of their ass. I’ve only spent about 6 months off soda, so I probably drink between 2 and 4 diet cokes every day. (EVERYONE HAS A CRUTCH GET OFF MY LAWN.) I dig small pieces of dark chocolate sometimes, and chips are still a vice, but I do a serving instead of four. I haven’t owned a microwave in over a year and I only use the one at work to heat up my lunch, that is usually left over from the night before home cooked meal from scratch. Now, I love running, writing every day, coloring, networking, reading, going to the park, drinking with friends still, diabetes advocacy, and going to see movies by myself. Between the dentist, the OBGYN, the eye doctor, my endo, my general practitioner, the nutritionist and the occasional ER or orthopedic surgeon, I see my fair share of doctor’s. And the needles, well, they aren’t as bad as they used to be.

I still don’t know that much about my health. I’m still learning more and more every day. But, damn I know more than I did six years ago.

I am not insulted when someone refers to themselves as a person with diabetes. Or says they check instead of test. But, I am not a person who has diabetes. I am a diabetic. It changed me. It made me who I am. I test because those mathematical numbers make a difference in the way I handle my life and the way my doctor looks at what is my best treatment.

Sure, I am a person. But don’t discount what defines me. I don’t. 

Tuesday, May 17, 2016

Within the Sound of Silence

Two days in a row!? I'm on a roll!

Click for the The Other Half of Diabetes - Tuesday 5/17 Link List.
We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)

I'm thrilled this topic is being discussed. Not because it's super happy and exciting, but so many people see the needles and the blood work and the doctors and think it's totally manageable, so why are we really complaining. Right? Wrong. While those are all important aspects, it's not all diabetes is.

Sometimes, diabetes is being so hungry and having extremely high blood sugar, but not being able to eat. Some times it is being so full, but you went over the amount of insulin you actually needed and are dropping and have to chew up chalky glucose tabs. Some times, it's waking up many times in the middle of the night to treat or going to the bathroom. Some times it's high anxiety that you're doing everything wrong. Some times, it's all the questions about "How are your sugars?" -or- "Are you controlling your diabetes?" -or- "How did you possibly get diabetes? Could you not take care of yourself?" I often cry from stress-because I'm a crier. I can get angry when I have a bad pump site or when some one steals my brand new pump, CGM, and three months of supplies off my door step. (YES THIS HAPPENED.) It's frustration fighting the insurance companies to get exactly what you need. It's sadness when I look at my boyfriend Shawn and he sees me so angry, sad, frustrated, and annoyed-the look on his face saying that he would do anything to take it off my hands for even an hour. And, some days, it's just fine and all I see it as is the needles and the blood work and the doctors. 

How have I learned to deal with the mental aspects? Well, I haven't. But, I try. With Therapy. With my favorites in the DOC. With strangers in the DOC. And I even have one beautiful friend with Crohn's Disease who pretends to be diabetes so I can yell at something and blame a physical being, in exchange for sometimes me pretending to be Crohn's disease. This is one of the most fantastic outlets, because we have no idea what the other is going through other than the fact that we both have chronic illnesses that don't have a cure. Some of my close friends see the frustration I have with diabetes, but other than that, I just go about my day assuming no one will get it other than the select few I've let in on the anger and defeat this disease brings.

I don't have any advice to get out of the funk. If I did, not one would be out of it. The only thing I can recommend is to talk. And realize tomorrow may be better, or it may be worse, but it's still a tomorrow. And with all the feelings and resentment Diabetes brings, tomorrow is worth checking out. 

I think the mental aspect can take a toll on you long before the physical does in a lot of cases. It's so important to talk to someone if you're so far into the dark you can no longer see light. If it's a friend, a parent, a coworker, a sibling, a therapist, or someone in the DOC, don't fall in the silence.


By the way, I'll be heading to MasterLab 2016 this year. If you're going, let's be advocates together! 

Monday, May 16, 2016

Message in a Bottle..errrr.. a Blog.

It's Diabetes Blog Week! This means, there are different topics every day. It's cool and I usually participate. So, let the tradition continue!

Click for the Message Monday - Monday 5/16 Link List.
Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)

Why am I here? Well, I started for me. I am a writer. I have published poems (four) and I enjoy slam poetry. My 2016 New years Resolution (which I've actually kept up!) was to journal every day. I've started writing two different books, one that my goal is finish and publish by the time I hit 35. Oh yea. And I have an English Writing Degree from The State university of New York at Plattsburgh. I started blogging because it appealed to me. It was something I could do to keep up my skills. Plus, I needed a release from diabetes.

But, after I started my blog, I realized that I wasn't doing it for only me. I started making more friends in the Diabetic Online Community. I got people reading. And responding. And re-Tweeting. I realized, that maybe, JUST maybe, my blog could make a difference. Not necessarily in the grand scheme of things and changing lives. But, if one person was reading and felt for ten seconds that they weren't alone, then I did something positive with my blog.

I want Non-PWD to know what diabetes is like for me. And I want them to know that it isn't like that for every one. I want PWD to read and know that I have (very openly) struggled with mental health and I don't think there is any shame in that. I want everyone I know to see that I have fought and struggled to get the devices I need, the doctors that are best for me, the insulin that cooperates best with my body, and the types of test strips I like covered by insurance. I want people to know that if your insurance company says no, you shouldn't take it for the final answer. I want people to know that, if I can do this, they can do this.

My favorite job interview question is "What do you wish to accomplish most in this world?" My answer is ALWAYS: "To make a difference in someone's life." Only, it's not a cheesy job interview answer. It's how I truly feel. And if I can do that by blogging, whether it be for five seconds, five minutes, five hours, five days, or five years, then it was all worth me sitting down, putting my fingers to the key board, and talking about my diabetes on the internet.

Tuesday, April 12, 2016

So let's talk about Diabetes

About two months ago, my pump warranty expired. No big deal, right? Wrong. In fact, it's a very big deal. This means that if something that happens to my pump, I go without my basic control over my diabetes. Sure, I could go to injections. But, it's nothing I have ever been good at. I have a fight with my body without the constant flow of insulin. I go high when I shouldn't go high and low when my math is terrible. Worse yet, I can't feel it when it's happening.

Let's touch on that. Before the ACA, I could not afford insulin. My first pump and CGM costed me about $1600 out of pocket. That does not include more than three months supplies, much less test strips, insulin, glucose tabs, batteries, meter, lancets, doctors, blood work, or anything else diabetes related. The list goes on AND on. So, God bless Obama Care. Fight with me if you want, I will argue my point until I die of old age, or much worse, complications of diabetes. But, I digress.

I, along with my health care professional team, have been fighting with insurance for two months now. It was all looking very bleak. We have received not one, but TWO, denials about how I shouldn't be provided with a new pump, partially covered by health insurance, because I was not hypoglycemic enough. Let's review:

Hypoglycemia, according to Mayo. Yes. The last complication could mean DEATH. So, you're telling me, my life needs to be at stake in order for you to provide the tools that could prevent that? Okay. Thank you.

Yesterday, after months of many blood glucose tests, my basal being increased more than it ever has been, many treatments, and lots of blood work, I received a letter that said: "After reviewing your case, we determined the initial first two denials will be overturned."

HALLELUJAH! We have started on the process. What will this mean? Well, it may take a little bit. But, we have started.

This morning, at six forty five, I awoke and I felt weird. I decided I was fine, but I may as well check. I grabbed my meter. 55 mg/dl. That's LOOOOW. I'm supposed to stay between 100 and 120, ideally, as decided by my care team. I could barely feel this. What if, it happened in the middle of the night? While I was driving? While I was working? I could die. From one instance. There would be nothing I could do to prevent it. Tell me, again, how this is my fault.

In a very controversial year, I am facing the possibility of a president repealing the ACA. It's not perfect, I get that. But, it's something. Had this happened four years ago, I may have been fine because I have the most amazing support system any person with, or without, diabetes could ever ask for. The thing is, I'm luckier than most. Not every one is.

Today, we started the process of getting me a new pump and CGM. Today, I shelled out $206 for my insulin, covering my prescription deductible for the year. This is is the LATEST in the past four years I have made it. Usually it is done by April 1. Since I have been fourteen (I was diagnosed at 27,) I have worked at least two jobs. In the past six months, I have been fortunate enough to not have to do so for the first time in my life. And I am STILL struggling to cover my disease. I pray that in ten years, the system will be better. But, we can't afford to give a health care system, that makes everyone eligible , up.

I recognize that I still have luxuries that not every one has. I was able to pay for my insulin. And I know I will be able to save for my pump and CGM and make that happen, too. What happens to the 20 year old that can't? Okay, they can stay on their parents insurance until 26. What happens to the 27 year old, who is freshly diagnosed with an auto-immune disease, who doesn't have a support system?

I'm so thankful. I just want to make sure that whatever happens, it keeps getting better. I don't want to look back on my children, or my nieces and nephews (whichever comes first) and wish they didn't have to worry about the decision between paying out of a pocket to save their lives, or deciding to pay their rent.

These are major issues this year. And I am facing them on a day to day basis. I have had to be on the phone over one hundred twenty hours in the past two months to my insurance company, my doctors, and my distributor. I know I said that I have been blessed with only one job in the past six months. But, this...this has felt like my second job.

Keep your fingers crossed for me. And every one else faced with this insidious disease.