I'm at the gym. I'm paying a lot of money each month for a fancy gym program because if I don't pay, I won't go. I'm also paying a lot because I figure out so many things in my day-to-day life/career that I don't want to conquer fitness as well. It's challenging. (You have to vary your routines to see results.)
Another classmate is driving me nuts today though. She is just burning through all the routines. She's rowing super weird. Leans all the way back on her pulls. The very informative instructor says today is about strength and intensity, not speed. When we're on the treadmill she doesn't rest between distance runs. Which means she's not running fast enough on push efforts. She starts all her routines just before everyone else and before the instructor has finished counting us in. It's driving me absolutely insane.
I try telling myself that she's just not following the guidance of the class and she's missing out on the point of everything. But it doesn't calm me down. I try moving a little further away from her but I can hear her treadmill going faster than everyone else while we are walking. And then speeding up even more when we start to run. I try to tell myself it's just my low-level New Yorker OCD and I need to chill out. I'm getting a good workout in and that's what I want/need. But still, I can't shake the agitation. I know what's going on in my head is my problem and has nothing to do with her. But why can't I shake this agitation? Why am I so bothered by her?
Then I realize... I'm angry because the first thing I had to do this morning when I woke up was immediately made a post on Instagram so I hit the best time for my audience to see my posts. Because if I don't post at the correct times, IG seriously throttles my reach. It's drastically lowered my reach three times in the last three months. And there's no discernable reason why. Or anyone to talk to that actually can help me figure things out. It makes me so angry.
It's very addicting. When you're getting tons of views and great numbers the entire world is focused on your life. You feel like you're winning, achieving your goals, and will somehow make more money so you can upgrade your life. But the algorithm doesn't react in a human way or in a manner that I am accustomed to in the non-digital world. The three times I've found my reach diminished drastically were when I felt out of steam as a saxophonist or person. I felt human. I needed to rest and come up with new ideas. Immediately at those moments when I fed the beast less content, it throttled me super hard. When I started releasing more content again I started at lower levels of reach and never achieved similar levels as before. I don't ever feel this way in real life. Things feel much more consistent, positive, and upward moving. When I need a break in real life, I start back where I left off. This is not the way with the algorithm.
While I can understand why IG would want to have people fully immersed in their world, pumping it full of content, I can't get on board with it as a human and musician. The word dystopian comes to mind very quickly. The moments where I felt the most success with IG also felt like it was demanding my soul. Replying to every single comment on posts. Sending voice memos to every message I receive. Posting multiple times a day. Making banks of content to try and find some personal space away from my phone but never really getting ahead of it. Having my hands hurt because they are constantly on the keyboard or holding a phone. Getting headaches from looking down and focusing on a screen all day. Feeling like my playing is getting worse and losing my sound on my horn because I have to create music in a different way for the algorithm. All these things get to me.
At the moment I know the thing I'm craving the most is some sort of regular jazz gig. Over the winter, I played a weekly gig in Astoria and regularly subbed on two other jazz gigs around town. It felt great. The weekly gig has ended and the subbing opportunities have been fewer this spring. This stuff is normal. And it's time to try and make some real-life performing happen again. I also know that IG reacts to how well I'm playing so it's important in that regard to get some real-life gigs.
But the demands of being a saxophonist and the demands of the algorithm seem pretty counterintuitive. IG demands all your time. I've hardly had focused productive practice sessions in the last four months. I knew going into this that I would be sacrificing some of my playing to build an audience and reach but I'm still not sold on whether it's worth it. Quantity over quality is the name of the game with social media. And that is completely antithetical to being a high-level musician. In turn, it seems the posts that are the most successful are those where my playing is the best. (But also the ones where I just play the fastest with the widest range.) This seems to be quite the catch-22. With all that, I was enjoying my life the most when I was playing more in-person gigs. The only problem is they all pay 50-75$. And social media is the game today.
Going forward I have a large Youtube series that I'm about to release and I'm going to get back to my month-long roadmap I created to help with the IG posting schedule. I've put many, many hours of work into creating all this content and I want it to succeed. I'm very curious about the results after this next round is released. But I'm very unsure of how much more content I can create while feeling like my soul is being eaten. Perhaps once I cross 10k follows the algorithm will be less punitive. Hopefully, all of this begins monetizing in some way so I can hire others to help with all the computer time. Which will allow me to get back to being a saxophonist again.
All of this is in hopes that it elevates my career so I can play more jazz gigs and make much more than 50$ for them. NYC, my school loans, and my health insurance demand it. Also, nothing felt as good as playing a ton of jazz every week and getting better at my instrument. But social media is the world today and music very much lives there. We'll see how things go on this next huge content dump. But if my soul is completely devoured I'm logging off and heading back to the scene.
I got a very cool call last week to work the woodwind chair in Dave Malloy's version of Moby Dick. It's a one week engagement where we're playing at the American Natural History Museum in NYC. I'm really excited about this call as it offers new connections in a part of the music world I have yet to explore in town. I get to play flute. I really like playing flute. I royally screwed the flute part tonight.
We had about nine hours scheduled today for soundcheck, tech, dinner, and then an open dress rehearsal. We're towards the end of the open rehearsal and there's a long monologue that's really drawing my attention in. I love new works and experiences, so I'm totally absorbed. I notice my left shoulder starts to hurt and I think, it's just been a long day, my body is probably tired. The music and monologue continue. Captain Ahab and the captain of the Rachel are arguing over something (I don't quite know all the names and lines yet). Dave Malloy has written some great music to underscore this poignant moment. I'm supposed to be playing it. But I'm completely spaced out. I miss my entrance. I notice Or Mathias, the musical director looking at me and kind of smirking and laughing a bit. He's noticed how spaced out I am and lost in the performance in front of me (I think my mouth was open and eyes glazed over). I plow forward. If I'm going to make mistakes, I'm going to make them strong. That's what I tell my students, right? Well, I loudly blunder nearly every note in the song. I don't think I've messed up this many notes in a row, ever. I'm pretty confident no one in the audience heard my complete and utter train wreck (there's no direct mic on the flute). But I'm positive Dave and Or did.
What the f$%! happened!?!? I check my pump and it says 250. That's high. And I imagine I've been at that level for a minute. When my blood sugar is high and I'm already tired from a long day, my concentration is shot. I remember playing the flute part and thinking, "that finger should be moving right now, why is it still down? Don't breathe now. Man, my fingers are slooowwww. Cover the tone holes better." None of that happened though. It was just one bad note after another. My pump doesn't give an alert to send an insulin correction because there's still enough in my system. I check the active insulin reading, not much is active still. I override the pump and give a hearty correction. I've been running on the higher side lately and I'm sick of it. I've thought for quite a while that my correction and evening basal rates are off. I shouldn't have eaten three slices of pizza... But I was hungry.
I finish out the show, which is about another 20 mins and pack up my instruments. It's about 35 minutes total before I'm out the door and on the train. I'm still at 250. Not much walking or energy has been expended yet though. Generally, when I'm sitting or relaxing for long periods of time my blood sugar level stays on the higher side. And when I walk, especially with an instrument on my shoulder, my blood sugar level plummets. It's extremely frustrating. I arrive home and my levels are descending. Around 180. I hang with some friends and relax for about an hour. Knowing that I'm hoping to be asleep in about 50 minutes, I check my blood sugar. 140. Sitting on the steps of my apartment for about 20 minutes with a number like this, I'm hopeful that I'll be able to fall asleep when I'd like. But I was incorrect.
What transpires is two and a half hours of eating sugar, sitting up right, and waiting for my blood sugar to rise. It's physically and mentally exhausting. I'm so tired and all I want to do is sleep. Time passes.. 2am 88, 2:15 - 83 - sugar, 2:30 - 87, 2:45 - 85 - sugar, 3 - 92.... I'm supposed to be up at 7:30am. My blood sugar is supposed to be going up. I look at every goddamn thing on the internet. I sit awake dreaming about how the rest of the world is asleep. How everyone can do what they want with their lives because they can get a full night's rest. I thrash my blankets in anger, because punching the wall would making playing my show very difficult the next day. I'm hungry. How can I be hungry? I pound some mixed nuts, cheese, peanut butter and celery. More sugar... My teeth feel sensitive. 3:15am - 96. So close.
I fall asleep around 4. I've set my alarm for 8am, knowing I'll be writing an email canceling my 9am counseling session (which I pay out of pocket for). I still have a rehearsal at 10:30am at the Musician's Union with the John Yao Big Band. I wake up at 8, write the email and fall back asleep for another hour and a half.
I write this post as a way of lowering my stress during these late night moments where I can't go to sleep and desperately want to. It helps me feel more connected to the world knowing that someone might read this and gain a better understanding of what people with chronic illnesses go through. My diabetes is generally under control. But so much thought and effort go into every decision of my day. Will I make the walk to the subway? Will my blood sugar go to high if I don't exert enough energy today? I'm hungry. What's healthy for my blood sugar versus what's easily available. I have to be on stage for an hour and a half. Do I have my meter and sugar in case of an emergency.
I'm reaching as far north as I've ever been. Flying to South Korea today, I'm currently somewhere over northern Canada with about ten hours left of the longest flight/journey I've ever taken from my home/life/everything. My anxiety is certainly high while on this flight. I'm nervous about a few things. First, I'm getting sick and I hope a good nights rest will help me recover quickly. I don't want to spend my two weeks away sick. Second, I'm uncomfortable about being diabetic while this far away. I'm confident I can manage my blood sugar levels, but I'm fearful of losing my supplies and being in foreign countries without access to my medical team. I sent a message to a friend, mentor, and fellow diabetic musician who played with Joe Henderson and has led a long life and successful career as a touring artist/healthy diabetic for some advice just before I boarded the plane. The advice, "Check your blood sugar often and if you eat food you are not familiar with, go easy on the insulin units. Take a container of honey with you for the nights, in case you wake up suddenly with hypoglycemia. Always carry snacks with you. Don't bring your honey in your carry on bag. TSA will take it from you. You can get OJ on board the plane if you need it. Enjoy your trip and play beautifully." The last sentence is particularly inspiring.
I've never wanted to go to China, it is a very unknown place to me. I'm sure if something did go wrong, I wouldn't have trouble finding refills, but the unknown scares me. Perhaps this is what is really bothering me.
Three hours into this flight, I don't feel like I am on a journey of exploration or growth. In my past before I was diabetic, any trip I took away from home for me was a time for experience and learning. (I'd like to think, like those existentialists and their adventures we all have heard so much about). This trip though, I feel as if I am running from my life, rather than dealing with it. I have this dream of being a successful musician, but as I sit here achieving it, I wonder if this goal is just an escape. I'm not excited to go to the other side of the earth. I'm very happy to work in music, but as I sit here, I'm not excited. Is music an escape for me from my problems? Have I been using it to avoid things in my life? What would it mean for me to stay put and work on my personal issues? How do I get to the point where I am excited and happy everyday with the way things are in my life? Or am I just nervous on a plane, high above Canada? Perhaps once I am on the ground teaching and performing all these questions will fade. The flight back to the US should give me plenty of time to assess these questions.
Other much more personal questions arise. My anxiety is definitely high and there is more than enough time to think on this 15 hour flight. Some realizations though: the earth is absolutely massive and I don't think I could be an astronaut anymore.
To be continued on the return trip...
September 29, 2014: On the ferry to Hong Kong from Zhuhai, China.
The last three days in Zhuhai at the Contemporary Music Institute were incredible. I have never been treated with more kindness and respect.
After traveling for basically two full days (NYC -> Newark -> Detroit -> Incheon, Korea -> Hong Kong, China -> Zhuhai, China via subway, shuttle train, walking, small jet, huge jet, van, same van again the next morning, HK express "grift bus airlines", ferry, and finally SUV) I arrived at my hotel. My new friends Pump and Sky ask if we would like to have dinner. After 48 hours of non stop travel an actual sit down meal sounds incredible. I'm imagining a local bar, a beer, and a cheese burger. Why I expected this in China, I have no idea. I'd reason though it has something to do with me being an American. My bandmates and I say yes to dinner and we arrive to meet the CEO of the CMI Ms. Jo, with the entire staff to great us for an official dinner and welcome. We sit at a very large circular table and are served more different types of food than I have ever seen. My wine glass is never empty for one second during the meal. We are treated as honored guests and they are truly excited to have musicians like us teaching at their school for the next three days. In the moment though, I cannot comprehend any of this at all. After such a long journey and a life of feeling unwanted as a musician in the US, this is almost too much for me to handle. People carry my bags, bring me water all day (I'm attempting to suppress my cold and we are in the tropics, it's so hot), get me medicine, take me and my colleagues to special lunches/dinners where I never eat the same food twice, clean my room, cover my every need. I want to help the students and the school as best I can.
Before arriving in China I was very apprehensive about what I would encounter. From my US perspective China seemed dirty, rude, a rival. Now having been to Zhuhai for three days I easily have learned China is nothing like anything I could have imagined. Firstly, it's huge, unbelievably big. Zhuhai, called a "Nice quiet small town" by Pump. It is a massive city that makes places like Philadelphia seem small and quaint. I can't imagine how big Honk Kong is going to be. China is also growing so fast. So often I would see apartment buildings 25 stories high or more in groups of 10 or more being constructed. (The scaffolding around the buildings is made of bamboo, mind blowing.) People are saying China is beginning it's Industrial Revolution. You see building and construction everywhere. But you also see elderly people picking through the trash with their specific trash picking tools. The disparity is as striking as the growth.
To me, it seems as if Jazz is just getting to China. People love music here. The CMI is the first jazz school in southern China. Making the total number of jazz schools in China, two. We had roughly 20 students from areas as far away as northern China/Mongolia who took a train for 44 hours to get to Zhuhai. Each student was incredible. Only hours after a lesson, the students would be incorporating the new techniques into their playing. A student came to me after my history of jazz saxophone master class and said it was so eye opening for him that he couldn't sleep the night after it. It was a great honor for me to have such amazing students. I felt like we truly helped them in the musical lives.
An idea I have been struggling with the days leading up to China is my self worth as a musician and individual. I've always worked very hard at music and my various jobs, but I've always felt like I wasn't good enough, blue collar and not proud of it. Because NYC is so competitive it can be very difficult to see where you stand on a global scale. In someways, even now as I ride the ferry, I'm having a hard time wrapping my head around the idea that my skill as a musician and the type of person I am have allowed me the opportunity to travel to the other side of the planet and experience such kindness, respect, and generosity. I'm hoping I can carry the gift of this feeling with me back to NYC and sustain it.
I am also very proud of my blood sugar levels thus far on the trip. I have easily eaten 100 to 200 new foods in the last three days and I have maintained great levels. I am really proud of myself.
October 2, 2014: Guest House Pan: Daegu, South Korea
Woke up this morning in Daejon, S. KR. I am so sick. I have to see a doctor today. First though, the train to Gimcheon to teach a masterclass and perform a concert at Eugen's former high school. We've been traveling so much that as soon as I take my seat, I fall asleep. Feeling exhausted and terrible doesn't begin to describe how I feel today. I'm excited though, it's only been a couple days in Korea and again the people have been incredibly receptive.
All of the sudden I wake up and we're in Gimcheon; it's time to get off the train. We meet the administrators of the school and yet again I am blown away by how graciously we are treated. The principal greets us in his office around another large round meeting table. Eugen, the principal, and the head administrator talk for a few minutes about our journey so far and what lies ahead. They say how glad they are to have us at their school and I feel like an honored and welcomed guest. The schedule for the day is sorted and I have some time. I tell the administrator that I must see a doctor today, I'm not getting better. His assistant drives me to the doctor and I know I am in good hands.
Seeing a doctor in Korea was unbelievably easy. No appointments. No calling insurance companies to verify coverage or primary care information. No random bills in the mail for unforeseen amounts afterwards. Just show up, pay 20$, and get taken care of. So, I go to the office, check in, they take my vitals, I see the doctor. I tell the doctor my story, he does his examination, I receive my prescription. My driver friend goes to the pharmacy across the street, gets the meds and we head back to the school. Total time, 30-45 mins. Absolutely unbelievable. The meds are even thoughtfully divided for you and marked when you need to take them. The US healthcare system could learn a thing or two from what I experienced in Korea. Back to school for my masterclass and performance.
I feel like a broken record but I am again overwhelmed by how much people in Asia appreciate music. The students at the school are acting as if rock stars are visiting for the day and are going to teach them all how to destroy a dressing room. I ask the students if there is a place in the school where I can get some snacks and tea? 15 overly anxious and excited students lead me through the school, some with instruments in tow to the school cafe. I feel like I'm in the center of a tornado. After our performance that afternoon students sneak into the backstage area for photos and autographs, gawking at how tall our drummer Justin is and how amazing we all are. It's time to leave Gimcheon, no bag carrying for the band. The students carry our things and we leave like heros. Unbelievable.
So, back on the train. Time to head to Daegu. Find my seat, asleep again. We arrive at Guest House Pan an hour late. This place is incredible. It's my first time at a tradition Korea Guest House. It's like the Korean equivalent of my dream weekly gig. Small intimate setting with high ceilings and everything is made of wood. The owner of Guest House is incredibly gracious, especially considering we are an hour late and are basically supposed to be playing as we arrive. She provides us with our meal and lets us start an hour late. Feeling full and happy to be at our final destination for this day, we play two amazing sets and elate the audience. The owner is so happy with our performance she takes us to traditional Korea breakfast the next morning before we head on to Seoul. Again, overwhelming kindness and plates of food.
It's the next morning, we've eaten and we're finally ready to head to Seoul. The only problem is it is a holiday in Korea and the whole country is traveling from city to city. We haven't purchased our train tickets yet and there are concerns that the train will be sold out. What about taking a car to Seoul, we're not that far right? Wrong. We've been taking the KTX all over Korea and it is a high speed train. Daegu is over 4 hours away from Seoul by car. But today is a holiday and the roads are packed, so it would probably take 6 to 7 hours to drive. No one in the band has had any clue how far we've been traveling the whole time in Korea. Each day we've been taking the bullet train for hours to each of our destinations, criss crossing the country side at 150 plus miles per hour. After some unproductive conversations about how we're not going to get to Seoul, someone finally looks to see if there are seats on the KTX and low and behold, there's space. We make it Seoul with time to spare and perform in the largest jazz festival in Asia, the Jarasum Jazz Festival.
October 5th, 2014: Seoul, Korea.
It's nice to be in one city for more than a day or two. We're staying in Bukchon, the historical district of Seoul. Tourists are walking up and down the hills of this beautiful area taking pictures of themselves using what appears to me to be golf clubs with the heads replaced by cell phones. I call them, "Selfie Sticks". I haven't seen these yet in the US, but I'm sure they'll appear soon.
After playing Jarasum I feel this kind of emotional let down. We've played the gig we set out to do and now we're doing small venues all over Seoul. We expected to play for thousands of people at Jarasum as it was billed as Asia's largest jazz festival. But our audience was roughly 150 people. Everything was beautiful about the gig though. The stage, the sound, the audience, all incredible. The only problem was, it was freezing. I'm still not feeling 100% and I'm worried walking pneumonia is in my future. Tour is definitely beginning to take it's toll, I am excited about the idea of returning to the US to rest and recover for a week.
My last couple days in Seoul turn out to be amazing though (big surprise). Although we're playing what appear to be small venues to me, we're playing the most important venues in Korea. It's an awesome feeling. Audiences are gracious and excited to hear our music and meet us. I haven't really been able to practice the last couple weeks while on the road but I feel like I am able to play any idea I have in my mind on my instrument. It's a very cool feeling. This is the first jazz tour I've ever done and it's an amazing feeling musically to perform every night like this.
I'm realizing a lot of the fears I was experiencing on the plane to Asia are fading. Seoul feels like New York to me. I'm playing gigs all over the city and mentoring students in the art form I love. It's a great feeling. I wish I could live this type of life more often. While on tour I'm booking gigs back in NYC and hiring musicians that inspire me. I'm beginning to fully understand all the work I've done this last year to produce my first album and what a great feeling that is. I'm excited to produce more albums and put out the ideas that are floating around in my head. I feel a personal acceptance of where I am in my life and am happy with what I am doing and working on. I know I am heading on a path that will hopefully lead me to achieve my dreams. It's awesome.
A gig or two more and then it's time to head back to America.
October 9th, 2014: State side, NYC.
I'm still sick. My roommates confirm, I sound like hell. Physically, I feel destroyed. The antibiotics I received in Korea worked on killing my sinus infection, but I have yet to kick my cough and congestion. As a diabetic though, I am thriving. I had plenty of supplies during my journey and my blood sugar levels were spot on the entire trip. I also didn't loose any of my supplies. It was much easier to keep my sugar levels in an acceptable range in Asia than in the US because the levels of carbohydrates in each meal there were much lower. Much of the meals were protein and vegetable based with a side of a cup of rice. I'm actually missing this style of food now that I'm back home.
I definitely feel like a different person after this trip/tour. I've actually never experienced anything quite like it. I got way more of an existential journey than any other of my previous trips. Perhaps with diabetes more is at stake while I'm away from my comfort zone. Perhaps because I've had to become much more aware of my self and surroundings through having diabetes I was much more perceptive on this trip. Adding to that going to a place for the first time that is truly like no where I have ever been doesn't hurt.
Life with diabetes is a constant battle. It requires my constant attention and management. It unfortunately takes priority over most everything in my life. It makes everything all day and night more difficult. Through the struggle of learning to live and manage this disease though I feel like I'm becoming a stronger and better person. It's odd, by losing certain parts of my life (like the ability to process sugars) I feel like I'm getting more of what I desire out of it. I wish there was a cure for Type 1 diabetes, I would take it in a heart beat and I can't imagine how great it would feel to go back to a life without diabetes. But, through diabetes I've learned so much more than just counting carbs, insulin ratios, how inept the insurance and medical companies are. I know there are difficult times ahead with diabetes and when they arise I need to remind myself of my successes like this tour, how great I feel after it, and how I didn't let this disease stop my dreams.
It's been four years and it's time for an upgrade. I require new parts. I recently received the new Medtronic Minimed 530G insulin pump and the Medlink Enlight Constant Glucometer to go along with the pump. In theory, if these two devices work perfectly Medtronic is on it's way to creating the "artificial pancreas." This seems to be the popular choice as a way of better handling type 1 diabetes for most companies right now. I'm personally not thrilled about the artificial pancreas approach because it requires wearing many devices on your body and filling your pockets with pumps and meters. But, if the end result is better health and a safer lifestyle, I'm all for it.
My initial impressions of the new 530G are that it seems pretty similar to my older version of the same pump. The Medlink CGM is smaller and less obtrusive on my body than the Dexcom G4 CGM that I had been using previously (so I like that). The Medlink also directly links to the 530G allowing for one less thing in my pockets, which initially is a huge win. The 530G also comes with a new belt clip, which had broken off on my previous pump, allowing for more space in my pockets. It's odd, but so far my favorite thing about the new pump/system is there are no meters or pumps in my pockets. It's quite a powerful sensation actually.
The mechanical connecting of the pump to my body remains the same as the old version. Nothing new to learn or report there. But the connecting of the Medlink to my body is quite a process of layering adhesive tapes. After going through the many steps of taping the Medlink to my body, I do like how secure it feels. One problem I had with the Dexcom was that the sensor would fall off of my body after a few days. The Medlink isn't going anywhere. But, I believe the tape materials used on the Medlink are not good for my skin.
The 530G has a lot of new features built into the operation of the pump; multiple fail safe questions for the user. For instance, "Ready to fill cannula, is the pump currently attached?" And a new auto shutdown feature that I will get to in a minute. A lot of the questions focus around the Medlink CGM though. It appears to me the way Medtronic is attempting to create the Artificial Pancreas is through constant alerts and reminders to the user. Not an actual device that requires little to no maintenance by the user, like an actual pancreas. I do find that the constant questions and alerts better help regulate my sugar levels, but the pump is constantly beeping and alerting me to every little detail throughout my day. A lot of time, I already know the information the pump is alerting me to.
The sensor range on the Medlink CGM is very small. Often if the pump is on the opposite side of my body as the sensor, the pump reads as weak signal or lost signal. Sometimes you have to go through the calibration mode all over again just to reconnect the Medlink to the 530G even though they were only a foot apart. The Medlink sensor also requires a lot of calibration on it's own. It seems to become uncalibrated quite quickly. I still have to check my blood sugar levels via a traditional meter at least 6-8 times a day, just to keep the Medlink in check. Also, when the sensor decides that it needs an update on it's own, the pump will not stop beeping until you input a blood sugar value. This is very annoying if by some reason the sensor decides that it needs to be updated every night in the middle of the night for the next 6 days (which is the duration you are supposed to wear the sensor for). So far I haven't made it a full 6 days on one sensor yet. Either it irritates my skin so much that I have to remove it or it beeps so much that it starts to drive me a little crazy.
Another new feature is the automatic suspend feature. The idea behind this feature is that if the Medlink reads your blood sugar level below a certain value, the pump will automatically suspend itself. Also, if you do not respond to the alert (I believe the second time), the pump will beep a lot and display a distress signal alerting people around you that you have diabetes and you need assistance. I like the idea behind all of this. As of now though, I'm not sure if the Medlink is accurate enough to place your full faith in this feature. Because of the inconsistency of the Medlink I believe this could be a bit dangerous, especially while sleeping. If your insulin is suspended when it shouldn't be in the middle of the night and you don't wake up to the alerts for whatever reason, you may find yourself with quite a high blood sugar in the morning.
Overall, I believe the new system to be beneficial. It seems to help keep my blood sugar levels more regulated and keeps me safer, I think that's important. But I think in part the system works well because I've learned what my body is telling me about my sugar levels without a CGM. The constant beeping by the 530G makes me ask myself more often about what is going on in my body, therefore I'm maintaining tighter control.
Music, Music, Music: I love this: Garrick Ohlsson playing Chopin Etude Op. 10, No. 1
Getting the run around from the medical supply companies, doctor's offices, and insurances companies big time today. My current medical supply and insurance company partnership only allows me to receive one month of supplies at a time (it's not like I'm ever not going to need these supplies, why do the chronically ill have to be limited to such a low amount? What if someone went out of town for more than a month?). This requires me once a month to call into the supply company and ask for a refill on my life saving medical supplies. I call early every month as to deal with whatever problems arise. This month, there was no shortage of problems and completely incompetent customer service staff.
So I've had it, I'm through with the medical supply company I'm using and I want a new one. I call my insurance company and ask if there is a medical supply company that they use which allows me to get three months worth of supplies. The customer service agent doesn't really understand and gives me the numbers to supply manufactures, not supply companies. So, I hang up and call back hoping to get a more intelligent individual. I do and she gives me the names of the companies they work with. Apira, Byram, Edgepark, Genadyne, and Epic. I decide to look up some reviews of these companies to find which one may be the best to work with. Some of what I found is fairly heart breaking and unfortunately seemingly common place among medical supply companies. The third review in my post here is particularly difficult, read with caution.
Cris I: This company is HORRIBLE in every possible category. Their "customer service" folks operate at snail speed, and are borderline incompetent. Their billing practices are less than above-board. Their product selection is laughable. And their prices are several times greater than you can get the identical products online. If it were possible to give this company negative stars, I would. This program forces you to give at least one star in order to post a review - which is a shame, because this company deserves none. My opinion is reflected in the vast majority of customer posts on this cite. Do yourself a BIG favor, and stay away from this place. Go elsewhere.
Melissa Dale: As a T1 diabetic, I am so outraged at the unprofessional approach taken by this company. Unlike breast pumps or the like, I need to go through Edgepark (repeatedly) in order to LIVE. I literally have no other choice, and let me tell you, I would infinitely rather call some 3rd rate tech support center. When I call, the people I talk to could clearly care less. Their only goal seems to be to pass you onto somebody else. Phone calls last up to hours, and it takes WEEKS to get everything straightened out in order to get an order. I have been passed around in circles between several departments, each one saying there was nothing in their department holding up the order... must be the next department. I have yet to have an experience that doesn't end in tears. Several areas on their website do not work (unprofessional to say the least). I wish I could find the appropriate words to truly express how ridiculous this company is, and that I'm not overreacting in the least. It already sucks dealing with this disease, but I would say that Edgepark sucks every bit as much.
Byram: 1 Star out of 5 on Yelp (This is a particularly difficult story to read, you may want to skip this review)
Cliff H: I am a colostomy patient who depends on Byram for ordering my colostomy bags and supplies every month. When I placed my last order there was some kind of problem with their online ordering system. On Friday, when I still had not received confirmation of my order, I called to speak to a live person to tell them I would be out of bags by Saturday if I didn't get my order. To be clear, when you have a colostomy, you CANNOT run out of bags. You can't go to any local store to buy them as they are an "order only" item. The Byram person told me they had obtained approval for a Saturday delivery and that I shouldn't worry, my order would arrive the following afternoon. At around Saturday at 4pm I called the Byram 800 number as my order had not yet arrived. The operator told me that they looked up my order and it was coded wrong so it wouldn't arrive until Monday. That's when the real Hell for me started. I had to spend the next 48 hours naked from the waist down with a bucket under my stomach to catch what should have been going into the bags. Due to Byram's mistake, I had to spend what were the most dehumanizing and humiliating hours of my life thus far (and please God, don't let there be any hours in my future that are as bad or worse than these were). I am going through treatment for colon cancer. I have lots of issues to deal with. I also am not able to work right now so every day is a fight for me - financially, physically, etc. To have to go through that kind of humiliation when I'm already this far down was beyond anything that I could imagine. If you are able to go through another medical supply company - DO IT. Don't use these people. Whatever your medical problem is, if they didn't care enough to make sure I had just the basics that I need (the colostomy bags) so that I didn't have to suffer with a bucket under my stomach to catch the poop for two days, they sure as heck won't likely care about what's going on with you.
Better Living Now: My current supply company: 2.5 out 5 Stars on Yelp
So the way things look now, my current company seems to be not that bad compared to what is out there, which seems to be terrible and de-humanizing. But 2.5 out of 5 stars isn't exactly thrilling for me. There are plenty of reviews talking about how bad Better Living Now's customer service is on their Yelp page. It seems that poor to terrible customer care is a major theme when dealing with supply companies. I think for now, I may be stuck where I am when it comes to receiving my supplies. It's just so unfortunate that bureaucracy and incompetence makes people's lives with chronic illness doubly difficult.
Been enjoying Bill Stewart's playing and composition Mynah:
I came home after work and my supplies have actually arrived. The supply company actually sent me tracking information this time. Somehow my doctor and supply company actually co-ordinated to get a new prescription. I actually received all my supplies!! I only had to call the supply company twice and the doctor once. This is a huge win, this month.
I wasn't fully aware though of how much stress I was carrying around with me this week while waiting for my supplies. I felt generally alright since my first call to the supply company but many times in the days since I would remind myself, "Call the supply company. Make sure they received the new prescription from the doctor. Tell them to just send whatever they have prescriptions for currently and not wait to send all my supplies at once, when they have the new prescriptions. Don't forget to make a payment for previous supplies. If the person on the phone sounds incompetent, immediately ask to be transferred. If you don't get what you need, ask for the supervisor right away."
This state of being is common with diabetes. So often I find myself stressed in some part of my mind with whether my supplies are going to come, am I going to run out of supplies, have I taken to little or too much insulin, will this visit to the doctor cost me an arm and a leg, can I actually walk to where I am going today, do I have my sugar and meter?
As a diabetic I have to make so many decisions throughout my day just to get anywhere. It's becoming second nature, after five years, but the stress involved with managing a chronic illness is massive. I work to take steps to lower my stress levels but as this disease never takes a break, I find that I can feel fine and normal one minute and then low and ultra discouraged the next.
Along with all the stresses of managing my health and supplies, there is also the issue of how my blood sugar level actually effects my mental state all together. When my blood sugar is very low, it's difficult for me to hold conversations and put together coherent ideas. I need to just sit down and fully recover. When my blood sugar is high for an hour or so, I don't feel bad. But when it's high for a consistent period of time, I become easily agitated and frustrated with just about anyone and anything. Doesn't make for a happy Jones.
Chronic illness is definitely a mental game. I'm getting better at playing it, but it seems there will always be new players and rules along the journey.
Got a lot of fun gigs this month, playing a lot of great music. I really can't wait. And now that I have my supplies for the next period of time hopefully I can really let go and just enjoy music with my friends.
Here's the Ben Wendel Quartet performing Jean And Renata. Featuring Gerald Clayton, Joe Sanders, and Henry Cole. I really want to see this group the next time they are in Nyc.
-No worries, not a big deal. All though this clear tube running from the pump into my body does allow me to receive texts from 1993 directly to my brain.
"What?"
-Sorry, it's just an insulin pump.
Today's technology has really advanced how diabetics manage their health. From the insulin pump with wireless receiver and meter, that doesn't require coding (I have no idea what coding means on a meter btw) to synthetic insulin which doesn't require refrigeration. Insulin pens instead of syringes and vials. National food labeling standards. Dietary dictionaries. Websites and blogs on the best ways to manage diabetes from diabetic's personal experiences. If I have to be diabetic, this isn't such a bad time. Hopefully soon technology will help me to not be a diabetic at all.
It's amazing though, this technology is right under everyone's nose and most people don't notice it, or use it. It's also amazing that when they do notice it, they think of a pager, which no one outside of a hospital has used it in at least fifteen years, at least in NYC. I've visited many doctors in New York and most of them haven't seen the pump since med school. When I'm wearing my Dexcom continuous glucose monitoring system, I end up giving most doctors a lesson in diabetes technology today.
It seems the general population of diabetics in my neighborhood are still using insulin pens with fast acting insulin like Novolog or Humalog and long acting insulins like Lantus. When someone is first diagnosed they have to learn to use syringes and vials for a period of six months before they are allowed to use the insulin pump. Personally, this made very little sense to me. First off, I don't want to carry around syringes, vials, or pens with me everywhere I go. Second, I don't really enjoying giving myself shots multiple times a day. Third, I want to use the most up to date methods for managing my condition. As soon as my six months were up, I was on the pump. It fits in my pocket and I can take my insulin with me where ever I go. Also, I don't have to take all of my insulin at once,which is a little scary at times. The pump allows for your total amount of insulin to be spread out over a period of hours allowing for better control. But I will say, whatever method works for someone to stay in a healthy range, I'm all for it. Diabetes is different for everyone.
Flying can be difficult with a pump. The pump won't set off a metal detector, which is nice. But if you fly through an airport with a full body scanner and you don't take your pump off, you definitely will get pulled aside and scanned for explosive materials. It is annoying. If your doctor hasn't seen a pump since med school then the FAA has no clue what one is.
So thanks technology, scientists, doctors, and inventors for continuously pushing forward with new ideas and devices to make everyone's lives better no matter their condition. Google currently has a new contact lense in the works that will also function as a constant glucometer. View thew ABC news article here: http://abcnews.go.com/Health/google-contact-lens-monitor-diabetes-holds-promise/story?id=21577373. I look forward to all the questions I'll get from this new device that will only further me looking like a cyborg.
