Dear MDI's,
I remember the sun as it filtered through the small window of the doctor's office and onto the table. On it held an orange, a cup of water, and a few littered syringes. My mother, my dad, and my diabetes educator sat around the table. "This is how you do it," she showed us all, injecting the syringe into the orange. "The orange is similar to human skin. Porous," she said. I shed a great deal of tears before I could give the injections without cringing. I was so nervous, fixated on how much it would hurt. But my desire to live overcame my fear.
8 years of my life, so long now it seems, a needle has never been far from me. Car rides spent trying to angle myself right while driving to inject if I am in a rush in between gigs... running out of insulin in my pen on accident and searching for a spare syringe to try and draw the last few units out of the empty pen. Trying to remember to inject 15 minutes before mealtimes. Bruises and searching for new injection sites while accommodating hundreds of different types of outfits. Getting blood on white clothing, always, inevitably. Bent syringe needles. Sticking insulin in coolers when going out to avoid it getting ruined from the heat. Waking up in the middle of the night to test and inject correction doses. Trying frustratedly to avoid nighttime highs from intense workouts. Double injecting for pizza 2 hours after eating it (still a pain).
1-2 long acting injections daily. Various short acting injections - one for each meal, any snacktimes, any corrections. A minimum of 4-5 shots a day. 8 years. Over 15,000 injections in 8 years. 15,000! What inch of my skin hasn't had a needle put through it, at this point? I have always hated it - and even when I find a comfortable piece of skin to inject, I have to rotate it, to avoid lypohypertrophy (a lump under the skin caused by accumulation of extra fat at the site of many subcutaneous injections of insulin). A condition just for us diabetics.
This has been my life as I have known it, and I've gotten comfortable with it. I feel nervous embracing a new change, and I desperately hope I'll like it, and won't want to switch back. MDI's are a pain in the ass, but they're also in my comfort zone. There's a certain freedom to having nothing attached to you... and pumping is certainly expensive, even with good insurance. But I'm hoping I can get even tighter control of my A1C using one, and that it will be worth it. Truth be told, I'm very nervous! I'm nervous the pod will hurt to insert. You stick it on your skin, and then you start the sensor, and it automatically injects for you. That's silly, as I inject myself multiple times a day as is, but I'm nervous all the same. It's another thing to get used to. Another thing to plan for on trips out of town. Another thing to pack for. Another way that Diabetes is a constant presence in my life. But, that's the way it's gone for 8 years, isn't it? Learning and growing despite my illness. Pushing through, steadfastly, despite the daily pain, the extra steps, the anxiety, the blood, the bruises. This is the price of my life, and it's always been worth it, even though it's harder than before.
So, here's to a new adventure! Make it make life even better - and the space Diabetes shares with me, smaller.
Friday, July 12, 2019
Sunday, June 16, 2019
3 Years Without You.
Fathers day is always tinged with a little bit of sadness for me, as it's been 3 years since I've talked to my dad. For all of you kids out there who have a difficult relationship with a parent - I understand firsthand what that feels like, and how hard it can be. Growing up, it was always a guessing game to see if my dad would show up to gymnastics meets, graduations, birthday parties, dance recitals. Normally my father would arrive hours late, and we used to joke that we had to tell him to show up 3 hours early just to get him there on time. When he moved out of state when I was in middle school, I didn't see him for over 2 years. I remember crying back then - how much I missed daddy. Wondering when I would see him again. Feeling certain that he spent every day thinking of me and how much he missed me. But as an adult, the honest truth is that I really don't know if my father ever thought of me at all. I'm sure my father loves me, but maybe it's just not the kind of love I needed. It was only ever one sided. Hours in the car with him while he smoked, telling the same life stories. Years of forgetting birthdays. Sitting by the front door for 5 hours waiting on him to show up when he said he would. Calling to say he'd forgotten and wasn't going to make it. Or worse - the times when there were no explanations at all. My father hung the moon to me when I was a girl. I loved my mom, but she was tough on me. I was dad's little girl. He always had my back.
The day I decided to stop talking to my father, my mother told me how she'd tried my whole life to hide the kind of person he was from me. This is the depth of a mother's love, I suppose. But on that day, the puzzle pieces of my entire life felt like they clicked into place. It was the day before my wedding, and I hadn't heard from my father, even though he'd promised he'd be there. I had put off contacting him, worried about what might happen, but wanted to put the reality off. Everyone else was in town. I wanted to preserve the happiness I felt then... to put it into a box to keep it forever. A weekend surrounded by all of the people in my life I loved most. Including my daddy. I finally reached out to him, and that's when he told me,
"Oh, honey, sorry, I can't make it... xoxo".
I feel so much anger about that moment even now, even 3 years after coming to peace with things. That day, it felt like cold anger. Anger that had lived within me my whole life, burning only softly in the background. How could I even be that upset, knowing without wanting to ever admit it to myself that I'd never been my father's priority? I was heartbroken. Of course I was. That was the only time I shed tears over it. But this scenario encapsulated the relationship I'd had with my father for 22 years, whether I'd wanted to see it or not. The same thing had happened for my college graduation when he cancelled the night before, citing he just needed some time to decompress from work. All I'd wanted was to see my father for my graduation. Did he even care? Did I even make him proud? The 4 years that went by that he'd promised he'd come visit me at college. All the promises my father ever made, in fact, that were only fiction. The agreement him and my mom made to help me pay for my college tuition when my loans were short what I needed. "What am I going to do, then, Dad?" I'd asked him. "Drop out?" "I honestly don't care," my dad had told me. "If you have to drop out and work at McDonald's, that's God's will!"
This isn't really a post meant to bash my father, though. That's just to fill in a backstory for you. It's more just to reflect on what being his daughter feels like, and truly, it's this: Always having loved the idea of my father. All that I wanted him to be. All that I hoped he would be. But there may come a time in your life when you realize that your idea of who someone you love is isn't the same as reality. When, as much as you love them, you realize that the cost of continuing to let them in and let them hurt you really isn't worth holding on that long kept dream or idea. And this is why I chose to let go of my father. I tried to amend - I really did. I confronted him. I told him how he hurt me, many times. But my father never listened to me, even then, the last time. He only ever brushed what I felt off, and then ignored it like it never happened. Even now - my father will send me messages. Songs, or political opinions, or random news articles... acting like it never happened. I sent my father a long message about why I would no longer be talking to him on that day that we last spoke. He never responded. Never sent a card, or a present, for our wedding. And now he acts as though he can just nonchalantly still be a part of my life? The answer will be no, so long as my father chooses to ignore that he has hurt me in more ways to number. The answer will be no, so long as he refuses to sit down and have a conversation with me in which he holds himself responsible for his actions. And I truly doubt that day will come. It's not impossible, but nothing ever is, but... I don't hold my breath. Not anymore. He isn't worth that kind of heartache.
It's been 3 years, and things feel almost the same. My father never tried to be a part of my life. Never put the effort in. That hasn't changed. But what has changed is that my dad doesn't hurt me anymore, because I got to choose that. And that feels good. Because the cool thing about adulthood is that you do get to choose who you let in to be a part of your family, and I have a really great stepdad that I know loves me and has my back. I enjoy spending time with him. I never worry about whether he'll keep his promises. He's always 15 minutes early. He's reliable, and we butt heads sometimes, but he's everything I ever hoped my dad would be like, but never was. (And he probably won't read this because he doesn't have social media, but hey, you guys get to.)
It's been 3 years, and I've grown a lot. I've been growing all along. Learning, understanding, what it means to be a strong woman even when you feel alone. Letting that fire drive me to succeed in what I put my mind to. Pushing myself to heal despite all the wounds he created. Treasuring my mother all the more for being the strong and supportive mother she's always been, as hard as I might have liked to think she was on me when I was 16. Daddy issues... sure, I have a few. That's part of who I am, and I won't or couldn't deny that. But there's no shame in that. And there's no shame in taking the reigns of your life into your own hands, and choosing the kind of family you want to surround yourself with. There's no shame in choosing to say goodbye because that's what's better for you. And that's where I'm at: this is better for me. I don't hate my father, I never will. I forgive him today and every day. But I don't want him to be a part of my life, not anymore. He had 22 years to do that, and what he chooses to do for the rest - well, that's up to him. It's not my concern anymore. I love my dad, because heck, I wouldn't be here without him. There will always be a hole left from all of the hopes and dreams I had for him in my life. A hole left in the place all children have where they crave and need the positive affirmation and love of a parent. I am left to contend with that in other ways. But I am learning. There's no shame in that. Only new strength to be found.
My thoughts go out to all of you today, who have lost fathers. Who have difficult or estranged relationships with your fathers. All of the scenarios in between. And my heart is happy for those of you who never have to confront these burdens.
Much Love,
Lacy
Sunday, April 7, 2019
I Finally Have a Continual Glucose Monitor! Here's Why That Makes Me Angry...
I recently had the opportunity to purchase a continual glucose monitor, and in just 5 days, it has completely changed my life. Since I was diagnosed with Type 1, I have wanted one, but back "in those days", they weren't considered reliable enough to be a regular substitute for blood glucose testing (just an adjunct), and they weren't typically covered by insurance. The definitely weren't covered by Medicaid. You can imagine how excited I was to come home last Tuesday and discover the Dexcom box on the doorstep. I excitedly ripped it open, reflecting on how much this meant to me, and how long I had had to wait for one - 8 years. 8 years almost to the day, as I realized with a laugh that my diabetes "birthday" - April 3 - had come with a present this year, just one day early.
Here's a video of me describing my experience with my CGM after Day 1 in case you feel like watching me talk about how I still hate needles for 3 minutes
I peered at the auto injector after turning on my transmitter, suddenly terrified. I grew up with an intense fear of needles, and saying I've overcome it in my 8 years with Diabetes would honestly be a stretch. More like, I've adjusted around it. I don't cry when someone has to take blood or give me an injection now. I'm okay with blood glucose testing, but I have to do it on myself. I need to have control. I wish I were better with managing my fear, but this is the best sort of agreement I could make with myself to manage staying alive. Not too bad. But I couldn't even see how big the needle was hiding in the injector. How was injecting it going to feel? The fact that I couldn't anticipate these things made me highly anxious. People rarely ask Diabetics how they feel about all the needles. Actually, they never do. By people, I mean health care practitioners. You're just expected to do the damn thing. But heck, those things hurt sometimes. Pumps? CGM's? Syringes? Needles? Lancets. They don't feel good. Sometimes, I feel like I'm just a wuss because I still think these things hurt quite badly sometimes. Not always, but sometimes. I can't really think about it, or dwell on it, because that's really not conducive to getting on with my life and, again, doing the damn thing. But in the early days, I used to meticulously count how many times I'd have to endure pain to get through the day. Twice at mealtimes, once before bed. Two in the morning. 9. I endured pain 9 times. This isn't to garner pity for myself, it's just to say that I've spent a long time getting to the point where I don't think about it much these days. I just try to get on with my life. It works well enough.
I must have pulled up at least 3 youtube videos on people injecting the Dexcom G6 sensor for the first time. No one seemed to flinch, but heck, the first girl who did it had cystic fibrosis. Were these people just all used to it and I wasn't? I put the injector up to my abdomen... and then realized it was stuck. Crap! The sensor is surrounded by a tape that adheres to your skin. If I ripped it off now, I'd ruin the sensor, and it wouldn't stick to me. I was upset. I couldn't bring myself to press the button. Kris offered to press the button. I thought about it and then chickened out and skittered away. I called my mom, trying to get the courage to do it. Damn it! This was like injecting myself for the first time. I remember sitting in the booth at the sushi place. "I'd just do it," my mom told me. "Because if I don't, I'd die. You just have to do it." Not particularly comforting, but actually, my mom has a way of not sugar coating things that helps sometimes. I cried, but I did it, feeling very sorry for myself at the time.
30 minutes later, I finally pressed the damn button, and actually, I didn't feel a thing. I shook my head, annoyed at this fear of needles, still. Hopefully, next time it wouldn't take as long. I get to leave them on for 10 days at a time.
A CGM gives 24 hour feedback on your blood glucose, gives trends (is my sugar going up or down, and how fast?), alerts me when I'm high or low, and I can transmit the data to my phone and apple watch. It's utterly incredible, and I've never had anything like it. I immediately felt as though I'd been driving a car blind all of these years - unable to witness trends in between mealtimes, or stay on top of my blood glucose, or experience what it's like to treat a low before I'm actually low. Valuable time at work that I'd have to take out just to get a single number on a screen - unknowing if I would be high or low 30 minutes later - has now been returned to me. My quality of life is 10 times better with a CGM, and I noticed this after a single day.
And to be frank with you, this is where we get to the real meat of this post, because honestly, that makes me incredibly angry. Please be aware: this is not intended to sound like a complaint. But rather, it's a commentary on the nature of our current healthcare system. I waited 8 years for this technology that has utterly changed my life, because I couldn't afford it. 3 different kinds of insurance, and none of them covered this without a huge, thousand dollar expense on my part, plus hundreds monthly for supplies. Impossible to afford without huge sacrifices. 8 years of my life where I knew injecting 15 minutes prior to mealtime was important, but didn't personally witness the difference it makes in my blood sugar until just 5 days ago, witnessing the huge spikes and later crashes that are a consequence of waiting to inject even 5 minutes before a meal. 8 years of having to so often guess. Waiting until I'm symptomatic with a ;ow of 32 to be able to treat a hypoglycemic episode. Even now, I spent $700 on this CGM to meet my deductible, and it's still $60 a month just for my supplies for this meter. Not counting my $25 copaqy for each insulin I need. The fact of the matter is, this technology is so expensive, that it's unattainable for so many who were in my shoes. A CGM has been scientifically proven to reduce A1C levels. That's 8 years of better, tighter blood glucose control I could have had had this technology been affordable. That's 8 valuable years of me being complication free, a hugely important window of opportunity in which to care for my body, that feel almost wasted. So ladies and gentlemen, this is why I get angry when people brush off LEGITIMATE concerns on behalf of diabetics by stating that they can "just" go get insulin at walmart. When will people start realizing that this is not, cannot, be the answer? My A1C has lowered by 3 POINTS since getting new insurance this year. That is, on average, a change of more than 100 mg/dL in my average blood glucose over the span of 3 months. The difference between a future with complications and a future without. Because I can afford a long acting insulin that works great for me and a piece of technology that is a valuable tool to manage my glucose 24-7.
Diabetes is not one size fits all. We cannot brush off the concerns of others like me by stating that 50 year old insulin is the answer. This is like saying that people with depression should take MAO inhibitors - a more dangerous, older version of antidepressants with a number of side effects that have rendered them less popular over the years - versus SSRI's if they can't afford them. I cannot stress enough that affordable access to the kinds of tools and drugs I believe people need is key. I suppose I feel so compelled to continue to state this because I cannot forget where I came from. I cannot forget what it was like to live in constant worry over my disease because I could not afford to properly manage it. And I cannot stop thinking of other individuals who have gone through and are going through this, too. Let us keep fighting until this changes.
Tuesday, April 2, 2019
8 Years: A Love Letter to Diabetes
Tomorrow will mark 8 years with Type 1 Diabetes.
Trying to wrap my head around this is as impossible as trying to believe that I had Diabetes when I was first told of my diagnosis. How I'd wished they were wrong when I first heard those words... my mind had flashed back to 7th grade. English class. I had a teacher who was Type 1. I used to hear her talk about how she had to prick her finger and feel terrified at the thought just listening. She'd given us a book to read about a girl at summer camp with Type 1, and she'd gotten made fun of at camp for asking for an apple on her tray to replace her cookie. Diabetes was a vastness of knowledge that I did not understand at the time, and there was no way that I could know that just 5 years later, I would face it myself and have to come to my own understanding.
What a mental and physical battle this disease has been. It has given me deeper understanding in life, and the ability to extend compassion to others who feel isolated or angry, depressed or confused, about their diagnoses and individual illnesses. I have spent 8 years trying to come to peace with it, as well as learn to thrive despite the setbacks it has lent me. In 8 years, I believe I've done an admirable job. I have faced navigating a world of having no insurance, relying on faith, goodwill, and my own contrivance to survive, while not becoming bitter or closed off to the world and a life I've struggled before with thinking has been unfair to me.
Diabetes has also hardened me. I've often thought of what exactly I mean by this... which can be a hard thing to explain to the outside. I think of myself as softer before my diagnosis. I'm quite a bit sad even still for that girl who didn't value every day... I wish I could go back. I wish I could go back. If somehow, I could get just one day from back then and relive it - I would treasure it in a way that words can't express. Just to savour one more day without finger sticks or needles, hypoglycemia or the fatigue after having repeated lows... not keeping a mini pharmacy in my purse. I had no way of knowing what this level of difficulty entails. I would choose to save anyone from that. I think of myself as having taken my healthy years for granted. I mourn for her. And then there's the line of my diagnosis that I crossed. I had to learn to grow harder. I missed the normalcy of my life, but I could only miss it as we all too often do: in retrospect. To overcome my fear of needles, to do what needs to be done. To sacrifice income, to sacrifice comfort, to sacrifice security, not even necessarily by choice - simply because of a defect in my genes. All to get on the same level playing field as many of you. To accept this as something I cannot change. I experienced a deeper understanding of what suffering meant. I experienced what it feels like to have my health, my future, and my independence come into question. I experience daily what it is like to fight harder than others without this illness around me in order to have the same opportunities. I learned to say no so that I could take time to care for myself. I learned to understand that who I was before my diagnosis and who I am now are different people. I've learned to take myself when I feel broken and beat down and glue those pieces back together.
I've often wanted to ask God the question of why he chose me to live with a chronic illness. Chronic illness is a world of looking for positives. Adapting to pain. Lonely periods of questioning and feelings of isolation. Of wanting to draw deep into yourself. How does one move past that?
This blog has been my answer to that. Talking about my illness has gotten me outside of myself, and helped me to take my anger and my frustration, as well as my sadness and confusion, and turn it into a platform to share with others. Something that makes me excited to talk about, and that gives me direction and inspiration to share with others.
Does that make up for the pitfalls? No... if I had one singular desire that could be met, it would be to live a life without type 1 diabetes. But for a girl that is terrified of pain and needles, who fought her way through grad school with no doctor or insurance... I've come a long way for simply wishing for what cannot be. I've learned to thrive without that comfort and security, while maintaining a sense of hope on the backburner still. The girl I was has been reshaped, slowly, through finger sticks and thousands upon thousands of injections and vein sticks. The girl I am realizes life is not a guarantee. I cherish each day. I cherish my eyesight, the feeling of warmth and soft socks on my toes, my functioning kidneys, my healthy blood pressure. I cherish my fridge full of insulin, and a job that lets me have that. I cherish the people that have helped me and the hands that have held me along the way. No, I am not that girl I used to be anymore.
8 years, and I am stronger. I've learned so many powerful lessons, and I'm certain that so many more await me. 8 years, but a moment can bring me back to that hospital room, a nurse on each side, an injection in each arm. 2 am in the ER, coming back into consciousness, into a world I no longer knew.
Can I live past that? I do every day. I will continue to, every day. One insulin injection at a time. Diabetes, I wish I could change you. But you are mine, as much a part of me as the rest of me. A part of me I cannot change. But a part of me I can never stop hoping to, which is as essential to my journey as living with you.
Thank you for following me on my journey these past few years. I hope that all of you continue to.
Sunday, March 24, 2019
Bogota Pt. 2
Kris and I are safely back at home now, where I'm at a much more comfortable place to blog about the remainder of our trip! I thoroughly enjoyed Bogota, although I will admit, leaving America always instills in me a sense of homesickness, as I always acutely remember everything that I love about my country when I have other places to compare it to. That certainly doesn't lessen my love for traveling, though.
Wednesday brought us some fantastic new adventures. Kris and I ventured out to Zipaquira (long ago inhabitants, the Chibcha, named the village for its abundance of salt), a small village about an hour north of Bogota known for its salt mines. Within a mountain within minutes of the village, there is an underground salt cathedral (Catedral de sal) that is quite unlike anything I've ever seen in my life, or am likely to ever see again. Driving out was an adventure in and of itself. We decided to go with a tour company because we were unsure of the likelihood of getting an Uber back to Bogota following our trip. And, the bus to Zipaquira only goes out on Saturdays. Our tire busted on the way out, but likely we were able to get the spare changed and stop for snacks at the gas station, selecting a number of different junk foods to try just for the sake of trying them.
Zipaquira itself is amazing. The tunnel in is coated in layer upon layer of salt crystals, and there are dozens of sculptures of crosses, angels, and Jesus carved into the salt. There is an actual cathedral there where churchgoers attend Sunday mass, a cavernous room containing a representation of one of Michelangelo's paintings in the Sistine chapel carved from marble, and larger than life crosses. It's incredibly difficult to describe, but I've included pictures here!
I fell asleep on the ride back, try as I might throughout my life to be an early riser (and always failing). When I awoke it was raining, and Kris and I decided to jump off the van at one of the stops north of our hotel last minute. The proceeding next few minutes in the pouring rain attempting to figure out the bus schedule in a foreign part of the city were somewhat stressful. Then, as the bus arrived, we realized that we would have had to buy a loadable card to get through the barrier - we hung back, unsure of what to do, when a woman pulled out her card and scanned us both in. "Muchas gracias", we told her, as she smiled and sat in the back of the bus. I was really touched by her kindness to two foreigners who clearly didn't understand the system. We hopped off at the Botanical Gardens with an hour left before close, wandering the lush landscape and labyrinths of trees, cacti, and flowers. The weather in Bogota is odd - it was 48 degrees and we could see our breath, but it was the balmiest 48 I've ever felt in my life, as the humidity was also 89%. It hardly felt cold at all, but my hair curled wildly regardless.
We were incredibly hangry, having skipped lunch in our rush to get to the botanical gardens in time, and grabbed dinner at a hole in the wall place called La Cuchinita, which boasted what the locals said was the best Ajiaco soup in Bogota.
Our last day in Bogota, we hiked it back to Candalaria, and ate breakfast at a place near Bolivar square called La Puerta Falsa. I realized I'd ordered WAY too much food when my cafe con leche came with a piece of bread, an english muffin, and cheese, followed by the tamale I'd ordered that was the size of my head. Altogether though, all of THAT was about $6 USD. We wandered Bolivar square, paid $3 to take photos with a pair or llamas, fed the pigeons our leftover bread, and I haggled for some earrings at one of the local markets, before making it back to our hotel for checkout.
Wednesday brought us some fantastic new adventures. Kris and I ventured out to Zipaquira (long ago inhabitants, the Chibcha, named the village for its abundance of salt), a small village about an hour north of Bogota known for its salt mines. Within a mountain within minutes of the village, there is an underground salt cathedral (Catedral de sal) that is quite unlike anything I've ever seen in my life, or am likely to ever see again. Driving out was an adventure in and of itself. We decided to go with a tour company because we were unsure of the likelihood of getting an Uber back to Bogota following our trip. And, the bus to Zipaquira only goes out on Saturdays. Our tire busted on the way out, but likely we were able to get the spare changed and stop for snacks at the gas station, selecting a number of different junk foods to try just for the sake of trying them. 
Zipaquira itself is amazing. The tunnel in is coated in layer upon layer of salt crystals, and there are dozens of sculptures of crosses, angels, and Jesus carved into the salt. There is an actual cathedral there where churchgoers attend Sunday mass, a cavernous room containing a representation of one of Michelangelo's paintings in the Sistine chapel carved from marble, and larger than life crosses. It's incredibly difficult to describe, but I've included pictures here!
I fell asleep on the ride back, try as I might throughout my life to be an early riser (and always failing). When I awoke it was raining, and Kris and I decided to jump off the van at one of the stops north of our hotel last minute. The proceeding next few minutes in the pouring rain attempting to figure out the bus schedule in a foreign part of the city were somewhat stressful. Then, as the bus arrived, we realized that we would have had to buy a loadable card to get through the barrier - we hung back, unsure of what to do, when a woman pulled out her card and scanned us both in. "Muchas gracias", we told her, as she smiled and sat in the back of the bus. I was really touched by her kindness to two foreigners who clearly didn't understand the system. We hopped off at the Botanical Gardens with an hour left before close, wandering the lush landscape and labyrinths of trees, cacti, and flowers. The weather in Bogota is odd - it was 48 degrees and we could see our breath, but it was the balmiest 48 I've ever felt in my life, as the humidity was also 89%. It hardly felt cold at all, but my hair curled wildly regardless.
We were incredibly hangry, having skipped lunch in our rush to get to the botanical gardens in time, and grabbed dinner at a hole in the wall place called La Cuchinita, which boasted what the locals said was the best Ajiaco soup in Bogota. 
Our last day in Bogota, we hiked it back to Candalaria, and ate breakfast at a place near Bolivar square called La Puerta Falsa. I realized I'd ordered WAY too much food when my cafe con leche came with a piece of bread, an english muffin, and cheese, followed by the tamale I'd ordered that was the size of my head. Altogether though, all of THAT was about $6 USD. We wandered Bolivar square, paid $3 to take photos with a pair or llamas, fed the pigeons our leftover bread, and I haggled for some earrings at one of the local markets, before making it back to our hotel for checkout.
All in all, I'd still say Bogota is definitely worth seeing. I do wish I'd planned this trip with more than 3 weeks preparation, in order to better practice Spanish and lay out a better itinerary, as there was a lot of the city that we didn't have the time to see. But for a whirlwind 5 day spring break trip to South America? It was stellar, and Kris and I learned so much more about the world, new cultures, and how much we (still) adore free water.
Wednesday, March 20, 2019
Adventures in Bogota!
I don’t normally blog about my travels, however, I guess since it’s the Lenten season, I feel the need to express my excitement and thoughts over this trip in some manner. As many of you may know, Kris and I are (currently) in Bogota, Colombia, and this was somewhat of a last minute, whirlwind, haphazardly thrown together trip planned over the course of 3 weeks. Lest you think I’m a total procrastinator, I DO generally like to meticulously plan trips, but Kris and I were totally undecided over what to do during spring break this year. It WAS going to be New York... and then Denver... but lo and behold, I was online in bed one evening, and just happened to spy $260 round trip tickets to Bogota. I feel as though my planning self wars with my highly spontaneous self at times - this is one scenario in which the spontaneous side won out, as I pranced down the hall of our condo singing how cool it would be if we went to a foreign country on a different continent, because I mean, they were cheaper than pretty much any domestic flight. So why NOT experience something completely new, right? South America has honestly never been on my radar, but suddenly I was pretty thrilled with the thought of planning a rather vast undertaking of a trip.
So here we are, with 3 weeks of crammed Spanish in a highly unfamiliar country. My thoughts are mixed - there’s the overall thrill (Bogota is incredible, and if you never plan to go, I’d highly recommend you put it on your travel list). There’s the panic (mi espanol es malo) and there’s some general skeevy areas that we’ve learned to just avoid. My purse has an anti theft feature on it and we have to be generally watchful, because the city is known for pickpocketers. And even the smallest undertakings require a lot more energy in general, because I find not many individuals speak English here (nor do I expect them to), so it’s a little nervewracking to go to markets and get street food. But overall, this experience has been massively enriching. I can’t describe the kind of fulfillment I feel from witnessing new sights and experiencing completely new things. It also continues to give me appreciation for my American passport, and how precious my citizenship is to a country that I criticize often, but am actually extremely blessed to belong to. My travels in Europe as well as my experiences in South America have made me realize this. Maybe it’s because simply nothing compares to the feeling of belonging, but there’s so many things we take for granted in America. Central heat and air. Free water at restaraunts. Free bathrooms, and nice ones. The expectation that most hotel rooms have warm showers, coffee makers, and internet. All of these are things not necessarily guaranteed here, which has given me a lot of perspective on how other people live and my own unique privileges. My experience with the people of Bogota has been mixed - in general, people have been nice, although we’ve gotten the occasional shit talking that we’ve caught glimmers of in Spanish, which to be fair, I’ve found I stick out like a literal sore thumb with my green eyes, blonde hair, and very pale skin - plus, to mention again, my bad Spanish. But I can’t fault anyone for that, honestly. I can see why tourists - and American ones, no doubt - can be unwelcome, especially given our current political climate today. I am striving to be respectful as well as to not expect anyone to speak my language while here. And I am cherishing the opportunity to educate myself on different cultures. All that being said, here’s some photos of our experiences thus far! Also, please excuse any typos - this is all getting posted from my phone!
Day 1 consisted of arriving at around 12:40 pm local time (Colombia is in the central time zone; and actually only about a 5.5 hour plane ride). I always feel like a little kid of planes! We flew over Cuba and Jamaica, both of which I caught glimpses of. And flying in to Bogota...what an experience! I’ve never witnessed such rolling green hills. England was green, and Ireland was too. But this was GREEN. Bogota itself has one of the highest altitudes of any capital city. It’s nestled somewhat within the Andes, and it’s sprawling. It seems to go on and on. Our cab experience was fairly sub par (we’ll stick to Uber next time, I highly recommend you familiarize yourself with the money as well as somewhat decent Spanish before hopping in a cab here), and I think we were both generally a little stressed out, having started the day at 4 am and then being grilled by customs in Spanish, finding an ATM to get Colombian pesos, and finding our hotel. We had dinner in a really cool, religious themed restaraunt, and successfully ordered in Spanish, and then slept FOREVER.
Day 2 consisted of hiking Monserrate, an incredibly steep mountain with a cathedral built on top hundreds of years ago. It’s also prudent of me to mention that, with the altitude being what it is, it’s already hard to breathe if you’re from, say, Florida. Even the LIGHTEST bit of exertion makes you winded and it’s generally harder to breathe. Add climbing 3000 extra meters up an extremely steep mountain of stairs and you have a recipe for stopping every 5 minutes lol that hike was worthwhile but hella miserable. But hands down one of the COOLEST parts of Bogota (see photos). Got a pretty gnarly sunburn because I forgot sunscreen. And there’s cool shops set up along the way. Plus bathrooms costing about $600-1000 pesos to use (about .50 c USD).
Following our hike, we took the funicular down, and then explored La Candalaria (Bogota’s Historic district), tried our hands at haggling at some markets, saw the Bolivar museum and plaza, waded through the biggest sea of pigeons I’ve ever seen in my life, saw a llama, and then took a nap and ate at the hotel because we were WIPED.
Day 3 (today) consisted of Museo del Oro preceded by an amazing breakfast ft. a tamale larger than my head (Day 2 consisted of chocolate y queso, which in Colombia, you place the cheese into the queso), and general exploration of the city. We attempted a trip to Paloquemao market, but the way there was so sketch, we unfortunately decided to turn around, and ended up exploring more of Santa Fe and the local parks instead. We also ate dinner at a really authentic hole in the wall place, and felt a lot more comfortable talking in Spanish! Our hotel also has a sauna and steam room + a pool, so we spent the rest of the evening relaxing our sore muscles from yesterday’s hike. We still have 1.5 more days in Bogota left to go, and I can definitely say, it’s an experience I will always cherish and never forget!
So here we are, with 3 weeks of crammed Spanish in a highly unfamiliar country. My thoughts are mixed - there’s the overall thrill (Bogota is incredible, and if you never plan to go, I’d highly recommend you put it on your travel list). There’s the panic (mi espanol es malo) and there’s some general skeevy areas that we’ve learned to just avoid. My purse has an anti theft feature on it and we have to be generally watchful, because the city is known for pickpocketers. And even the smallest undertakings require a lot more energy in general, because I find not many individuals speak English here (nor do I expect them to), so it’s a little nervewracking to go to markets and get street food. But overall, this experience has been massively enriching. I can’t describe the kind of fulfillment I feel from witnessing new sights and experiencing completely new things. It also continues to give me appreciation for my American passport, and how precious my citizenship is to a country that I criticize often, but am actually extremely blessed to belong to. My travels in Europe as well as my experiences in South America have made me realize this. Maybe it’s because simply nothing compares to the feeling of belonging, but there’s so many things we take for granted in America. Central heat and air. Free water at restaraunts. Free bathrooms, and nice ones. The expectation that most hotel rooms have warm showers, coffee makers, and internet. All of these are things not necessarily guaranteed here, which has given me a lot of perspective on how other people live and my own unique privileges. My experience with the people of Bogota has been mixed - in general, people have been nice, although we’ve gotten the occasional shit talking that we’ve caught glimmers of in Spanish, which to be fair, I’ve found I stick out like a literal sore thumb with my green eyes, blonde hair, and very pale skin - plus, to mention again, my bad Spanish. But I can’t fault anyone for that, honestly. I can see why tourists - and American ones, no doubt - can be unwelcome, especially given our current political climate today. I am striving to be respectful as well as to not expect anyone to speak my language while here. And I am cherishing the opportunity to educate myself on different cultures. All that being said, here’s some photos of our experiences thus far! Also, please excuse any typos - this is all getting posted from my phone!
Day 1 consisted of arriving at around 12:40 pm local time (Colombia is in the central time zone; and actually only about a 5.5 hour plane ride). I always feel like a little kid of planes! We flew over Cuba and Jamaica, both of which I caught glimpses of. And flying in to Bogota...what an experience! I’ve never witnessed such rolling green hills. England was green, and Ireland was too. But this was GREEN. Bogota itself has one of the highest altitudes of any capital city. It’s nestled somewhat within the Andes, and it’s sprawling. It seems to go on and on. Our cab experience was fairly sub par (we’ll stick to Uber next time, I highly recommend you familiarize yourself with the money as well as somewhat decent Spanish before hopping in a cab here), and I think we were both generally a little stressed out, having started the day at 4 am and then being grilled by customs in Spanish, finding an ATM to get Colombian pesos, and finding our hotel. We had dinner in a really cool, religious themed restaraunt, and successfully ordered in Spanish, and then slept FOREVER.
Day 2 consisted of hiking Monserrate, an incredibly steep mountain with a cathedral built on top hundreds of years ago. It’s also prudent of me to mention that, with the altitude being what it is, it’s already hard to breathe if you’re from, say, Florida. Even the LIGHTEST bit of exertion makes you winded and it’s generally harder to breathe. Add climbing 3000 extra meters up an extremely steep mountain of stairs and you have a recipe for stopping every 5 minutes lol that hike was worthwhile but hella miserable. But hands down one of the COOLEST parts of Bogota (see photos). Got a pretty gnarly sunburn because I forgot sunscreen. And there’s cool shops set up along the way. Plus bathrooms costing about $600-1000 pesos to use (about .50 c USD). 
Following our hike, we took the funicular down, and then explored La Candalaria (Bogota’s Historic district), tried our hands at haggling at some markets, saw the Bolivar museum and plaza, waded through the biggest sea of pigeons I’ve ever seen in my life, saw a llama, and then took a nap and ate at the hotel because we were WIPED.
Day 3 (today) consisted of Museo del Oro preceded by an amazing breakfast ft. a tamale larger than my head (Day 2 consisted of chocolate y queso, which in Colombia, you place the cheese into the queso), and general exploration of the city. We attempted a trip to Paloquemao market, but the way there was so sketch, we unfortunately decided to turn around, and ended up exploring more of Santa Fe and the local parks instead. We also ate dinner at a really authentic hole in the wall place, and felt a lot more comfortable talking in Spanish! Our hotel also has a sauna and steam room + a pool, so we spent the rest of the evening relaxing our sore muscles from yesterday’s hike. We still have 1.5 more days in Bogota left to go, and I can definitely say, it’s an experience I will always cherish and never forget!
Wednesday, February 13, 2019
The Knot in My Chest.
There comes a time when you have to try to let go of the hurt. You don't even necessarily want to. But you need to. You've held it all in for so long, it forms a lump in your chest. A hard knot of a lump, that tightens in times of anxiety, or anger, or sorrow. It tightens when you're reminded of the thing that caused it.
This has been me. This is me, it has been for years. The simple truth is that it's hard. It's hard to keep your head up and keep pushing forward even when it feels like life is a game of jenga that just tries to carve out pieces of you until you fall. That is what it feels like to live with a chronic illness, sometimes. Little pieces of you keep getting taken, taken away, making your footing feel less and less steady, making you resemble even less of what you were... making you feel less in control. More and more pieces get taken away. The knot grows tighter. What will make it all come tumbling down? I think having lived a normal life before my diagnosis made me feel a little bit more bitter about it all. I prided myself on my independence, on my strength. I could make do without relying on anything, or so I thought. Coming to need a drug that is the 5th most expensive liquid in the world makes that self perceived notion come crashing down into tenuous precarity. Suddenly, you have nothing. No insurance. No medicine. No idea how to go forward. My life, since that moment, has sought to balance that sense of instability that has shooken my very core and changed my being. I gave up a part of myself and became someone new in order to learn to survive this illness. I combated one of my greatest fears, needles, and I learned how to do it on a multidaily basis. I learned the art of silent struggle - how to keep working when my body is screaming that it's low, and wait until I'm inconspicuous to eat some glucose tabs. Keep a smile on my face as a princess and wait until my back is turned to fix it. Don't ever make it seem like it keeps me from doing anything others can. Discipline myself in order to learn to keep a manageable diet as devoid of unnecessary sugar and carbohydrates as possible. Find a way to get insulin for years without insurance.
What a lump in my chest it has become. Just when I feel it's settled, when it's under control, it's at a lull - something seems to keep it rearing back.
"Lie down," Dr. Brown said, furrowing his brow. I rested my back onto the table, breathing in slow, deep breaths, staring at the flecks on the ceiling.
"Hmm. Better, but you're borderline," he said, removing the blood pressure cuff.
I felt the lump grow and tighten. "Borderline? But how?" I asked, almost incredulous. "My blood pressure has always been good."
Dr. Brown shrugged. "Has anyone ever talked to you about going on Lisinopril?"
I recognized the drug from several of my own patient's charts. I shook my head, immediately frowning, almost choking. "Lisino- no, you're kidding me."
"I'm going to start you on it. Just 2.5 mg."
I was silent. "But... but my patients are on Lisinopril. I'm 25. Old people are on Lisinopril. Not me. How can I need that?"
"Listen," he said. "It's not even really about the blood pressure. It's for your kidneys. I promise this isn't the Dr. Brown case study. This is evidence based research. Your likelihood of living another 50, 60 years without some kind of kidney disease is very unlikely. Research shows that starting you on an Ace inhibitor now can help reduce that likelihood. It's in the research."
I couldn't deny evidence based practice, the very thing I had had drilled into my own head for years and years in school. I still felt close to tears.
"I would have put you on it sooner, but we had bigger fish to fry. Like your A1C. Now that it's in a normal range, we can worry about the other stuff."
I frowned as he put in the prescription. I know it seems simple, but the reason it terrifies me is that I don't take anything about my health for granted anymore. I'm not a teenager anymore, and I always knew eating healthy and exercise was important - especially with an illness like mine - but managing your health feels more like coasting then. Even now, I felt that my coasting was starting to creep more and more into an uphill marathon. Which was annoying, because I'm a .... kinda fit 25 year old. I'm not super skinny, but I'm not anywhere close to overweight. I'm not super strong, but heck, I can still do a backbend if I stretch a little first. I don't eat unhealthy. I have an active job where I'm on my feet all day. The only thing I can really say, is that I am intensely stressed at work sometimes and don't always manage my anxiety as well as I should. I felt like I must have really screwed up in order to get here. And beyond that, I felt intense guilt. Is this what I had done to my body? Years of bad decisions, depression, and trying to manage with whatever insulin supplies I could piecemeal together. The year of rationing and dose skipping to lose weight. How sad I had been then, how anxious. How lost for help. So many times, I felt so alone in my struggle. No one knew what it had felt like to go through what I had. But what had I done to myself? Had I completely messed up everything? What if the damage was irreversible, in some ways?
I felt... fragile. Like that first week in the hospital. Things would never be as they were before that week. My attempts only made me live a lie to temporarily forget this fact. But the reality was that my life would be one of constant remembering of this fact. You are not normal. You are sick. You will always be sick. Even if I didn't feel sick... my body didn't work like it should. And keeping my health up the way a normal person would, would never be coasting. Not anymore. I know that might see silly - it's just diabetes, right? It could be worse. But that's how it feels.
I do not sit and dwell on my upset over my situation daily, but there are times when I feel a little overwhelmed by the struggle, or feel that what I'm doing is not enough. I am still the woman who prides herself on her independence. So many times in my life the ways have been few, but I have made them. When I had so little, I made what I could of it. When I didn't have a lot of money, I created a business. I built a client base. I booked gigs. I was 17. When I walked into a bank at 19 to start my first investment, the banker shook his head and grilled me for 10 minutes about my account. "This is a lot," he said. "Pardon me for asking, but what do you do?" I worked tirelessly so that I never had to worry about being able to care for myself. I worked 2 jobs and got into graduate school. My last semester of undergrad, I was in a horrific car accident. I broke up a long time relationship that turned abusive. I worked 4 jobs to make ends meet and save. I was accepted to graduate school. I uprooted my life and moved to Atlanta. I have always made a way. When I had no way to get insulin, I figured it out, exploring every avenue I could. And I feel that I can overcome most things... with an able body. But the concept of ever not having an able body terrifies me. That visit scared me for that very reason. Was that really my future? Was my future the one I helped work patients through every day? I loved my patients, but I didn't want that... I don't want that for myself. Defeated, I went to work from there. Defeated, I went home and started a regular workout regimen again. I didn't really know what else to do. Just keep up the same, but try a little harder. I've finally gotten my A1C under control. Dr. Brown actually praised me on it. He made me split my basal doses to twice a day instead of one. It's an extra injection, but it's actually made managing my sugar a lot easier. My consistent working out has allowed me to lose 15 pounds so far, and I cut my basal my almost 10 units a day (from a previous 40 units per day to 30) and my insulin to carb ratio from 1:5 to 1:10. (Basically, my insulin needs decreased). My blood pressure is 110/66. I feel good. I still worry about the future sometimes, but this year, I have good insurance. This year, I don't have to worry as much. I can focus on my health. It feels good. I am trying. It's never too late to take better care of myself.
The lump in my chest is still there. I have learned to grow in spite of. My struggle is not the hardest, and it's not the easiest. It's my own. Am I good enough to deal with it? I guess so. I hope so. I'm living through it daily and telling myself that's the case.
This has been me. This is me, it has been for years. The simple truth is that it's hard. It's hard to keep your head up and keep pushing forward even when it feels like life is a game of jenga that just tries to carve out pieces of you until you fall. That is what it feels like to live with a chronic illness, sometimes. Little pieces of you keep getting taken, taken away, making your footing feel less and less steady, making you resemble even less of what you were... making you feel less in control. More and more pieces get taken away. The knot grows tighter. What will make it all come tumbling down? I think having lived a normal life before my diagnosis made me feel a little bit more bitter about it all. I prided myself on my independence, on my strength. I could make do without relying on anything, or so I thought. Coming to need a drug that is the 5th most expensive liquid in the world makes that self perceived notion come crashing down into tenuous precarity. Suddenly, you have nothing. No insurance. No medicine. No idea how to go forward. My life, since that moment, has sought to balance that sense of instability that has shooken my very core and changed my being. I gave up a part of myself and became someone new in order to learn to survive this illness. I combated one of my greatest fears, needles, and I learned how to do it on a multidaily basis. I learned the art of silent struggle - how to keep working when my body is screaming that it's low, and wait until I'm inconspicuous to eat some glucose tabs. Keep a smile on my face as a princess and wait until my back is turned to fix it. Don't ever make it seem like it keeps me from doing anything others can. Discipline myself in order to learn to keep a manageable diet as devoid of unnecessary sugar and carbohydrates as possible. Find a way to get insulin for years without insurance.
What a lump in my chest it has become. Just when I feel it's settled, when it's under control, it's at a lull - something seems to keep it rearing back.
"Lie down," Dr. Brown said, furrowing his brow. I rested my back onto the table, breathing in slow, deep breaths, staring at the flecks on the ceiling.
"Hmm. Better, but you're borderline," he said, removing the blood pressure cuff.
I felt the lump grow and tighten. "Borderline? But how?" I asked, almost incredulous. "My blood pressure has always been good."
Dr. Brown shrugged. "Has anyone ever talked to you about going on Lisinopril?"
I recognized the drug from several of my own patient's charts. I shook my head, immediately frowning, almost choking. "Lisino- no, you're kidding me."
"I'm going to start you on it. Just 2.5 mg."
I was silent. "But... but my patients are on Lisinopril. I'm 25. Old people are on Lisinopril. Not me. How can I need that?"
"Listen," he said. "It's not even really about the blood pressure. It's for your kidneys. I promise this isn't the Dr. Brown case study. This is evidence based research. Your likelihood of living another 50, 60 years without some kind of kidney disease is very unlikely. Research shows that starting you on an Ace inhibitor now can help reduce that likelihood. It's in the research."
I couldn't deny evidence based practice, the very thing I had had drilled into my own head for years and years in school. I still felt close to tears.
"I would have put you on it sooner, but we had bigger fish to fry. Like your A1C. Now that it's in a normal range, we can worry about the other stuff."
I frowned as he put in the prescription. I know it seems simple, but the reason it terrifies me is that I don't take anything about my health for granted anymore. I'm not a teenager anymore, and I always knew eating healthy and exercise was important - especially with an illness like mine - but managing your health feels more like coasting then. Even now, I felt that my coasting was starting to creep more and more into an uphill marathon. Which was annoying, because I'm a .... kinda fit 25 year old. I'm not super skinny, but I'm not anywhere close to overweight. I'm not super strong, but heck, I can still do a backbend if I stretch a little first. I don't eat unhealthy. I have an active job where I'm on my feet all day. The only thing I can really say, is that I am intensely stressed at work sometimes and don't always manage my anxiety as well as I should. I felt like I must have really screwed up in order to get here. And beyond that, I felt intense guilt. Is this what I had done to my body? Years of bad decisions, depression, and trying to manage with whatever insulin supplies I could piecemeal together. The year of rationing and dose skipping to lose weight. How sad I had been then, how anxious. How lost for help. So many times, I felt so alone in my struggle. No one knew what it had felt like to go through what I had. But what had I done to myself? Had I completely messed up everything? What if the damage was irreversible, in some ways?
I felt... fragile. Like that first week in the hospital. Things would never be as they were before that week. My attempts only made me live a lie to temporarily forget this fact. But the reality was that my life would be one of constant remembering of this fact. You are not normal. You are sick. You will always be sick. Even if I didn't feel sick... my body didn't work like it should. And keeping my health up the way a normal person would, would never be coasting. Not anymore. I know that might see silly - it's just diabetes, right? It could be worse. But that's how it feels.
I do not sit and dwell on my upset over my situation daily, but there are times when I feel a little overwhelmed by the struggle, or feel that what I'm doing is not enough. I am still the woman who prides herself on her independence. So many times in my life the ways have been few, but I have made them. When I had so little, I made what I could of it. When I didn't have a lot of money, I created a business. I built a client base. I booked gigs. I was 17. When I walked into a bank at 19 to start my first investment, the banker shook his head and grilled me for 10 minutes about my account. "This is a lot," he said. "Pardon me for asking, but what do you do?" I worked tirelessly so that I never had to worry about being able to care for myself. I worked 2 jobs and got into graduate school. My last semester of undergrad, I was in a horrific car accident. I broke up a long time relationship that turned abusive. I worked 4 jobs to make ends meet and save. I was accepted to graduate school. I uprooted my life and moved to Atlanta. I have always made a way. When I had no way to get insulin, I figured it out, exploring every avenue I could. And I feel that I can overcome most things... with an able body. But the concept of ever not having an able body terrifies me. That visit scared me for that very reason. Was that really my future? Was my future the one I helped work patients through every day? I loved my patients, but I didn't want that... I don't want that for myself. Defeated, I went to work from there. Defeated, I went home and started a regular workout regimen again. I didn't really know what else to do. Just keep up the same, but try a little harder. I've finally gotten my A1C under control. Dr. Brown actually praised me on it. He made me split my basal doses to twice a day instead of one. It's an extra injection, but it's actually made managing my sugar a lot easier. My consistent working out has allowed me to lose 15 pounds so far, and I cut my basal my almost 10 units a day (from a previous 40 units per day to 30) and my insulin to carb ratio from 1:5 to 1:10. (Basically, my insulin needs decreased). My blood pressure is 110/66. I feel good. I still worry about the future sometimes, but this year, I have good insurance. This year, I don't have to worry as much. I can focus on my health. It feels good. I am trying. It's never too late to take better care of myself.
The lump in my chest is still there. I have learned to grow in spite of. My struggle is not the hardest, and it's not the easiest. It's my own. Am I good enough to deal with it? I guess so. I hope so. I'm living through it daily and telling myself that's the case.
Sunday, January 27, 2019
Chronic Illness - Burden, Curse, Gift? All of the Above?
Today's church sermon really stuck with me:
"God's fire burns wet wood."
Even if you're not religious, I think these are truly beautiful words. I think at my own life - and all the times I have felt just like that - like wet wood. Too broken for fixing. Too dejected to go on. To beat down to think good things would come out of the mess that is life, sometimes. How many times in my life do I think those words would have been applicable! I wish someone had told me them long ago.
The mysteries in life, sometimes, seem too great to wonder. Things fall into place that you only see when the big picture comes together, but all the small pieces fitting into place feel hardly noteworthy, scarcely noticeable at times. And how easy it is to feel broken down by our trials and tribulations.
This has certainly given me a lot to ponder over the last few hours. I think often of the work that I do, why I felt called to healthcare, and how I find my place in the world where I feel that I am making a difference and doing something important. There comes a time in our lives where I think we start to wonder when all of the questioning, thoughts, and ideas swirling in nonformed patterns in our head come together into something tangible with which we carry on our lives.
In this present moment, though, I am grateful for all of the lessons that have been taught to me in 25 years. There was a time 5 years ago where I sat at my kitchen sink, unsure of where my life was going, unsure of whether I'd make it into school and where I was supposed to go from there and what I was supposed to do with the mound of heartbreak and other misfortune I carried at the time. Something I always marvel on in my life is how I feel I have always been carried through those difficult times - in spite of so many obstacles, questions, and hurdles and hurdle, there was always been some way in which to trial through and press onwards. And furthermore, I always seem to possess an almost inextinguishable fire in which to push through these things. As much as I find my own trials difficult, as I'm sure we can all call to mind events and circumstances in our lives that have evoked this same feeling in us, I love that my own difficulties have changed my heart in many ways that I feel, are changes for the better. In little ways - thinking twice about what one of my own patients is going through. Considering the emotional and mental ramifications of illness, and the amount of strength and capacity for perseverance that a person must develop or prepossess in order to overcome it. The lessons on compassion it has taught me. The lessons in humility - feeling that the very thing that makes me human, that the body that I rely on - has failed me, and the disappointment and fear that causes you to feel. Being previously health but then suddenly needing something that is oftentimes difficult to get, to keep you alive. The humility of having to rely on the kindness of others or seemingly happenstance but remarkable provisions to help you get through on a month to month basis. I suppose the lesson is, that even in our darkest moments, we are undergoing changes within ourselves or learning things that get us closer to who we are supposed to be, or equip us to help or connect with someone else somewhere along their own journey.
I was working with a patient last week, who is very young for being in a nursing home, and whom I've worked with earlier that year during another visit. This was my first day on this particular visit working with them - other therapists had worked with them the past month, with little progress having been made. No walking. No standing. Not even being able to get out of bed without a lift. We were in the parallel bars, and I was listening to them crying, very obviously anxious, about trying to walk. They had the strength - there is no technical reason why they shouldn't be able to - but something was holding them back. I wouldn't say this to every patient, nor would I seek to interject my own experiences on them to make it seem like I am lessening their own difficulties - but having known this patient pretty well from before, I looked at them, and I asked them, "I know you're scared, but what is the alternative?"
They looked at me. "Being in a wheelchair..."
"Right," I said. "When I was diagnosed with Type 1 Diabetes, needles were my biggest fear. I cried as a teenager every time I had to get shots or lab work. I couldn't have imagined anything worse than being diagnosed with an illness that required me to confront my biggest fear daily. And yet I was. And I was angry. But more than that, I was scared. Terrified. I didn't think I could possibly do it.
But then someone else close to me asked me, "what is the alternative?" And the only answer I had for that was dying. Because that was the only alternative, if I didn't find a way to get stronger and overcome my fear. And so I learned, little by little, and I taught myself, to overcome this. No matter how hard it was - I learned to be stronger.
I know you're afraid, but overcoming your fear is so much greater than living the alternative. I know that was the case for me, and I promise you that that will be the case for you, if you try. So please try. I know you can do this."
I would like to say the patient just got out of their wheelchair and could magically walk perfectly without help after that, but that wasn't the case. But they did stand. And they did walk. Albeit it wasn't pretty, but they did it. Twice. And that moment really touched me. In that moment, I did feel that my own struggles with anxiety, fear, pain, and the loneliness and isolation of illness equipped me to truly help somebody. And the next day I had them walking further, getting in and out of bed on their own, standing up from a mat - and that was such a good feeling. To have overcome something to be able to lend my own experience to help somebody else.
God's fire burns wet wood. Things we don't understand - the bad, the scary, the painful, the tragic - these things, while not good, can in miraculous ways be used for good. And we, in the midst of feeling broken and run down - we can rediscover the sparks that keep us going. We can find deeper strength. We can become people that spread goodness.
This is a reminder I believe we all can use, from time to time. I know I can.
"God's fire burns wet wood."
Even if you're not religious, I think these are truly beautiful words. I think at my own life - and all the times I have felt just like that - like wet wood. Too broken for fixing. Too dejected to go on. To beat down to think good things would come out of the mess that is life, sometimes. How many times in my life do I think those words would have been applicable! I wish someone had told me them long ago.
The mysteries in life, sometimes, seem too great to wonder. Things fall into place that you only see when the big picture comes together, but all the small pieces fitting into place feel hardly noteworthy, scarcely noticeable at times. And how easy it is to feel broken down by our trials and tribulations.
This has certainly given me a lot to ponder over the last few hours. I think often of the work that I do, why I felt called to healthcare, and how I find my place in the world where I feel that I am making a difference and doing something important. There comes a time in our lives where I think we start to wonder when all of the questioning, thoughts, and ideas swirling in nonformed patterns in our head come together into something tangible with which we carry on our lives.
In this present moment, though, I am grateful for all of the lessons that have been taught to me in 25 years. There was a time 5 years ago where I sat at my kitchen sink, unsure of where my life was going, unsure of whether I'd make it into school and where I was supposed to go from there and what I was supposed to do with the mound of heartbreak and other misfortune I carried at the time. Something I always marvel on in my life is how I feel I have always been carried through those difficult times - in spite of so many obstacles, questions, and hurdles and hurdle, there was always been some way in which to trial through and press onwards. And furthermore, I always seem to possess an almost inextinguishable fire in which to push through these things. As much as I find my own trials difficult, as I'm sure we can all call to mind events and circumstances in our lives that have evoked this same feeling in us, I love that my own difficulties have changed my heart in many ways that I feel, are changes for the better. In little ways - thinking twice about what one of my own patients is going through. Considering the emotional and mental ramifications of illness, and the amount of strength and capacity for perseverance that a person must develop or prepossess in order to overcome it. The lessons on compassion it has taught me. The lessons in humility - feeling that the very thing that makes me human, that the body that I rely on - has failed me, and the disappointment and fear that causes you to feel. Being previously health but then suddenly needing something that is oftentimes difficult to get, to keep you alive. The humility of having to rely on the kindness of others or seemingly happenstance but remarkable provisions to help you get through on a month to month basis. I suppose the lesson is, that even in our darkest moments, we are undergoing changes within ourselves or learning things that get us closer to who we are supposed to be, or equip us to help or connect with someone else somewhere along their own journey.
I was working with a patient last week, who is very young for being in a nursing home, and whom I've worked with earlier that year during another visit. This was my first day on this particular visit working with them - other therapists had worked with them the past month, with little progress having been made. No walking. No standing. Not even being able to get out of bed without a lift. We were in the parallel bars, and I was listening to them crying, very obviously anxious, about trying to walk. They had the strength - there is no technical reason why they shouldn't be able to - but something was holding them back. I wouldn't say this to every patient, nor would I seek to interject my own experiences on them to make it seem like I am lessening their own difficulties - but having known this patient pretty well from before, I looked at them, and I asked them, "I know you're scared, but what is the alternative?"
They looked at me. "Being in a wheelchair..."
"Right," I said. "When I was diagnosed with Type 1 Diabetes, needles were my biggest fear. I cried as a teenager every time I had to get shots or lab work. I couldn't have imagined anything worse than being diagnosed with an illness that required me to confront my biggest fear daily. And yet I was. And I was angry. But more than that, I was scared. Terrified. I didn't think I could possibly do it.
But then someone else close to me asked me, "what is the alternative?" And the only answer I had for that was dying. Because that was the only alternative, if I didn't find a way to get stronger and overcome my fear. And so I learned, little by little, and I taught myself, to overcome this. No matter how hard it was - I learned to be stronger.
I know you're afraid, but overcoming your fear is so much greater than living the alternative. I know that was the case for me, and I promise you that that will be the case for you, if you try. So please try. I know you can do this."
I would like to say the patient just got out of their wheelchair and could magically walk perfectly without help after that, but that wasn't the case. But they did stand. And they did walk. Albeit it wasn't pretty, but they did it. Twice. And that moment really touched me. In that moment, I did feel that my own struggles with anxiety, fear, pain, and the loneliness and isolation of illness equipped me to truly help somebody. And the next day I had them walking further, getting in and out of bed on their own, standing up from a mat - and that was such a good feeling. To have overcome something to be able to lend my own experience to help somebody else.
God's fire burns wet wood. Things we don't understand - the bad, the scary, the painful, the tragic - these things, while not good, can in miraculous ways be used for good. And we, in the midst of feeling broken and run down - we can rediscover the sparks that keep us going. We can find deeper strength. We can become people that spread goodness.
This is a reminder I believe we all can use, from time to time. I know I can.
Tuesday, January 15, 2019
Saying, "Things Will Be Fine" is a Luxury Not All Of Us Can Afford.
I was very smug in highschool about my political beliefs. Free market with limited government intervention. This had to be the missing piece in our broken country. Medicaid was a drain on our system. More competition was the answer to sky high medical prices. Obamacare was the worst possible thing that could happen. How could the government force us to buy healthcare? I couldn't imagine anything more wrong.
You would not have been able to change my mind. I could argue until I turned blue in the face, and I practically did, on many occasions. And there's a correlation to this: I didn't have a chronic illness yet. I'll be the first to say that I don't think that that means all of my ideas are right. But, having suffered with a very expensive illness for almost 8 years now, I feel that I've garnered enough insight to know what is and isn't helpful to people battling to pay for their medications day in and day out.
When I discovered that I had Type 1 Diabetes at age 17, the very system that I had lauded as a drain on our taxpayer dollars was the very system that saved my life. And I mean that, fully. My parents are divorced and my mother is self employed. We didn't have health insurance. When we were sick, we stuck it out or went to the urgent care or the health department. When I was hospitalized, the bill was $20,000 for a 5 day stay. And when I was told I couldn't leave the hospital until my parents bought my meds, I told the nurse, "Oh, well I don't have health insurance, but I'm sure my parents can just buy them."
I'll never forget the words she told me: "I don't think you realize how expensive they are."
And she was right: I didn't. $500 for a one month supply of my medication. And that's significantly cheaper than what it is now. I would not have been able to afford my hospital stay or medication without Medicaid. Before Obamacare came into effect, most private insurance charged 3 times as much for someone like me, and didn't cover any of the medications, including insulin, I needed to live. I truly do not know what I would have done.
Regardless, I stuck it out for the long haul. I kept insisting and insisting that Obamacare was wrong. Competition was key. I couldn't villianize big pharma all that much - it was their product, and they had a right to charge what they wanted, no? Year, after year. I stuck to this belief. But this year, I feel like I simply can't cling to these beliefs anymore. Politicians all sell us overinflated promises to get votes, sure. But, as a consumer of drugs on the healthcare market, I've been in almost any position you can be in now - Medicaid holder, underinsured, no insurance, high deductible plan, gold and platinum level employer-sponsored health insurance; and, having taken all of these experiences into consideration, I find it hard to cling to a system that places the dollar above the lives of people like myself, each and every day, even as they are crying out for help. I find it hard to justify a drug sold at $300 a vial when it was once sold for $1 by a man who refused to patent insulin because he wanted people everywhere to have access to it.
And furthermore... I'm tired. I'm tired and I'm frankly, really angry of people who have the luxury of throwing out their "I'm sure it's fine's" and advice used simply to find a means to justify the current problems that our healthcare system causes people who literally did nothing wrong except for losing in a poorly weighted game of genetic lottery. We do not all have the luxury of being able to have the faith to believe that things will be fine. We do not all have the luxury to believe that options will simply present themselves, or things will "eventually" work out. "Things will be fine" is a saying for the healthy. Those who are ill are not so lucky. Those who are ill without health insurance, doubly so. Because it's month to month, sometimes day to day, for these people. Saying "it will be fine" is not a solution. These people need fixes. Not excuses from others used to justify their not being able to afford to live well or live at all. And I say that having been there more times than you can ever imagine. Picture pouring your heart out to the world, humbling yourself and admitting that you struggle to afford a drug that most people have the luxury of natural producing as a hormone in their bodies themselves. Imagine the anxiety you feel month to month, worrying about what you'll do when the insulin runs out - worrying about what you'll do for the next three years without healthcare. As I did. And if you don’t know how that feels, please take a second to consider how lucky you are. Please take a second to realize how lucky you must be to even feel justified to entertain the thought that it’s okay for someone else to feel like this. And then imagine someone - more than just one person - comes along and says,
"Well you can just get insulin at Walmart."
"Have you checked GoodRx? Most drugs have coupons to offset the cost."
"All pharmaceutical companies have programs to help you afford your medications if you can't."
"Well if I needed a drug to live, I'd spend all my money on it because I have to. It really could be worse. You could go without some luxuries and maybe then you could afford your medications."
"Well (so and so) has no trouble getting insulin, so how can you?"
"Well it could be worse. If democrats had their way, we'd be paying for everyone's insulin! Imagine how much that would cost taxpayers!"
How would that make you feel? To have everything you feel, that you go through, disregarded because someone who knows nothing about your situation (and I guarantee you it's almost never diabetics saying these things) thinks their 5 minutes on Google and that time they got their antibiotics really cheap with a GoodRx coupon and that friend who told them drug companies have drug assistance programs makes them qualified to assume that you haven't already explored those options and that they possess some superior knowledge to you that makes you unqualified to be upset at your situation?
It's hurtful. To have everything you do criticized through a microscope and have people pick your choices apart and tell you how they think you could have done better and that somehow make it out that it's still your fault that medication is so expensive that it's unaffordable. You cannot imagine the anxiety that not being able to afford medication puts you through. Whether it's for a month, or for me, years. You don't know how it tests you as a human being. How it belittles your own self worth, or strikes fear deep within your heart. You don't know unless you've confronted that situation. But, as someone who has faced it, I can tell you that that's how it's like. So when I get emotional, for myself or others in a similar situation, I feel that it's my due right. I've been on this soapbox for years, but this is my life. I have watched people's lives be ruined because of unexpected health care expenses. I interact with my own patients daily and witness how a healthcare system designed to value the dollar over human lives makes people suffer. And how I have had my own life altered because of being thrust into a system that values the dollar over my quality of life, and my life itself. Over and over, I have seen flaws in my own beliefs regarding healthcare come to life. Including the hard truth that a free market system doesn't work when you hold someone's life in your hands. When you're selling a need, not simply a want. Free market works great for TV's. It works great for automobiles. It works great for cell phones. Want to know something it doesn't work great for? Insulin. Because drug companies have learned that it's more profitable to, instead of competing, collectively raise prices yearly - like they did just this month.What can I say about that? It doesn't matter whether insulin costs $40, or $300, a vial. It doesn't change how much I need it. Competition isn't working because the money isn't in the competition. Demand for life saving drugs is not effected by price. What is the incentive, therefore, to offer lower prices? There is none. So here I am: it's been 8 years since high school, and 11 years since I was a high school freshman, and almost 8 years with Diabetes. And I no longer believe that high school me was right. What I believe is that people should not suffer so greatly because of human greed. What I believe is that money is not more important than people. And I think that this is a simple but powerful stance to take, regardless of party affiliations or political beliefs.
So I ask you: How long will people with health conditions such as Diabetes continue to suffer? How long can you ignore people who are rationing their insulin and dying because of $1200-$1500/month insulin costs? How many excuses will you make to tell yourself that's okay? How many times will you brush those concerns off, assuming these people just haven't tried hard enough or missed something along the line that will keep them from struggling month to month, to tell yourself it's their fault, not this broken health care system? I implore you to remember that, regardless of your political belief, money is a man-made construct. Human lives cannot be valued in money. But some in the health care industry are clearly putting prices on our lives. I implore you to look inside of yourself and ask why you think those people who control the drug industry deserve your excuses while the people the market to suffer. And continuously, I ask you to raise your voice. I've seen awareness over insulin prices increase dramatically this year, and it's only picking up momentum. This issue is not going away. Us diabetics cannot afford to let it go away. I may have good health insurance with a low deductible and copay this year, but somewhere out there, there's a 20-something struggling to get insulin month to month just as I once was. I raise my voice not just for me, but for them. All it takes is a turn of the dice to fall back into a situation like that. It shouldn't be that way.
Let's change it.
You would not have been able to change my mind. I could argue until I turned blue in the face, and I practically did, on many occasions. And there's a correlation to this: I didn't have a chronic illness yet. I'll be the first to say that I don't think that that means all of my ideas are right. But, having suffered with a very expensive illness for almost 8 years now, I feel that I've garnered enough insight to know what is and isn't helpful to people battling to pay for their medications day in and day out.
When I discovered that I had Type 1 Diabetes at age 17, the very system that I had lauded as a drain on our taxpayer dollars was the very system that saved my life. And I mean that, fully. My parents are divorced and my mother is self employed. We didn't have health insurance. When we were sick, we stuck it out or went to the urgent care or the health department. When I was hospitalized, the bill was $20,000 for a 5 day stay. And when I was told I couldn't leave the hospital until my parents bought my meds, I told the nurse, "Oh, well I don't have health insurance, but I'm sure my parents can just buy them."
I'll never forget the words she told me: "I don't think you realize how expensive they are."
And she was right: I didn't. $500 for a one month supply of my medication. And that's significantly cheaper than what it is now. I would not have been able to afford my hospital stay or medication without Medicaid. Before Obamacare came into effect, most private insurance charged 3 times as much for someone like me, and didn't cover any of the medications, including insulin, I needed to live. I truly do not know what I would have done.
Regardless, I stuck it out for the long haul. I kept insisting and insisting that Obamacare was wrong. Competition was key. I couldn't villianize big pharma all that much - it was their product, and they had a right to charge what they wanted, no? Year, after year. I stuck to this belief. But this year, I feel like I simply can't cling to these beliefs anymore. Politicians all sell us overinflated promises to get votes, sure. But, as a consumer of drugs on the healthcare market, I've been in almost any position you can be in now - Medicaid holder, underinsured, no insurance, high deductible plan, gold and platinum level employer-sponsored health insurance; and, having taken all of these experiences into consideration, I find it hard to cling to a system that places the dollar above the lives of people like myself, each and every day, even as they are crying out for help. I find it hard to justify a drug sold at $300 a vial when it was once sold for $1 by a man who refused to patent insulin because he wanted people everywhere to have access to it.
And furthermore... I'm tired. I'm tired and I'm frankly, really angry of people who have the luxury of throwing out their "I'm sure it's fine's" and advice used simply to find a means to justify the current problems that our healthcare system causes people who literally did nothing wrong except for losing in a poorly weighted game of genetic lottery. We do not all have the luxury of being able to have the faith to believe that things will be fine. We do not all have the luxury to believe that options will simply present themselves, or things will "eventually" work out. "Things will be fine" is a saying for the healthy. Those who are ill are not so lucky. Those who are ill without health insurance, doubly so. Because it's month to month, sometimes day to day, for these people. Saying "it will be fine" is not a solution. These people need fixes. Not excuses from others used to justify their not being able to afford to live well or live at all. And I say that having been there more times than you can ever imagine. Picture pouring your heart out to the world, humbling yourself and admitting that you struggle to afford a drug that most people have the luxury of natural producing as a hormone in their bodies themselves. Imagine the anxiety you feel month to month, worrying about what you'll do when the insulin runs out - worrying about what you'll do for the next three years without healthcare. As I did. And if you don’t know how that feels, please take a second to consider how lucky you are. Please take a second to realize how lucky you must be to even feel justified to entertain the thought that it’s okay for someone else to feel like this. And then imagine someone - more than just one person - comes along and says,
"Well you can just get insulin at Walmart."
"Have you checked GoodRx? Most drugs have coupons to offset the cost."
"All pharmaceutical companies have programs to help you afford your medications if you can't."
"Well if I needed a drug to live, I'd spend all my money on it because I have to. It really could be worse. You could go without some luxuries and maybe then you could afford your medications."
"Well (so and so) has no trouble getting insulin, so how can you?"
"Well it could be worse. If democrats had their way, we'd be paying for everyone's insulin! Imagine how much that would cost taxpayers!"
How would that make you feel? To have everything you feel, that you go through, disregarded because someone who knows nothing about your situation (and I guarantee you it's almost never diabetics saying these things) thinks their 5 minutes on Google and that time they got their antibiotics really cheap with a GoodRx coupon and that friend who told them drug companies have drug assistance programs makes them qualified to assume that you haven't already explored those options and that they possess some superior knowledge to you that makes you unqualified to be upset at your situation?
It's hurtful. To have everything you do criticized through a microscope and have people pick your choices apart and tell you how they think you could have done better and that somehow make it out that it's still your fault that medication is so expensive that it's unaffordable. You cannot imagine the anxiety that not being able to afford medication puts you through. Whether it's for a month, or for me, years. You don't know how it tests you as a human being. How it belittles your own self worth, or strikes fear deep within your heart. You don't know unless you've confronted that situation. But, as someone who has faced it, I can tell you that that's how it's like. So when I get emotional, for myself or others in a similar situation, I feel that it's my due right. I've been on this soapbox for years, but this is my life. I have watched people's lives be ruined because of unexpected health care expenses. I interact with my own patients daily and witness how a healthcare system designed to value the dollar over human lives makes people suffer. And how I have had my own life altered because of being thrust into a system that values the dollar over my quality of life, and my life itself. Over and over, I have seen flaws in my own beliefs regarding healthcare come to life. Including the hard truth that a free market system doesn't work when you hold someone's life in your hands. When you're selling a need, not simply a want. Free market works great for TV's. It works great for automobiles. It works great for cell phones. Want to know something it doesn't work great for? Insulin. Because drug companies have learned that it's more profitable to, instead of competing, collectively raise prices yearly - like they did just this month.What can I say about that? It doesn't matter whether insulin costs $40, or $300, a vial. It doesn't change how much I need it. Competition isn't working because the money isn't in the competition. Demand for life saving drugs is not effected by price. What is the incentive, therefore, to offer lower prices? There is none. So here I am: it's been 8 years since high school, and 11 years since I was a high school freshman, and almost 8 years with Diabetes. And I no longer believe that high school me was right. What I believe is that people should not suffer so greatly because of human greed. What I believe is that money is not more important than people. And I think that this is a simple but powerful stance to take, regardless of party affiliations or political beliefs.
So I ask you: How long will people with health conditions such as Diabetes continue to suffer? How long can you ignore people who are rationing their insulin and dying because of $1200-$1500/month insulin costs? How many excuses will you make to tell yourself that's okay? How many times will you brush those concerns off, assuming these people just haven't tried hard enough or missed something along the line that will keep them from struggling month to month, to tell yourself it's their fault, not this broken health care system? I implore you to remember that, regardless of your political belief, money is a man-made construct. Human lives cannot be valued in money. But some in the health care industry are clearly putting prices on our lives. I implore you to look inside of yourself and ask why you think those people who control the drug industry deserve your excuses while the people the market to suffer. And continuously, I ask you to raise your voice. I've seen awareness over insulin prices increase dramatically this year, and it's only picking up momentum. This issue is not going away. Us diabetics cannot afford to let it go away. I may have good health insurance with a low deductible and copay this year, but somewhere out there, there's a 20-something struggling to get insulin month to month just as I once was. I raise my voice not just for me, but for them. All it takes is a turn of the dice to fall back into a situation like that. It shouldn't be that way.
Let's change it.
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