Today is a Good Day.

Last night I received some of the biggest news of my life. I know it was big news to ALL of my classmates - the culmination of years of hard work, achieving good grades, beating out hundreds of others for a spot in a very competitive program - and actually making it through the program. Passing my boards means I'm now licensed to practice physical therapy, and I can start my job once the state issues my license.

While this is a big deal to everyone, the post is about why it's such a big deal to me. Because, I feel like I could literally sing God praises through the rafters for finding out I passed. Words can't describe the work it took to get to that moment. The mental and physical strain it put on me. And words can't describe the depth of how God provided for me every step of the way... even when I doubted things.

My mind still goes back to the hospital room. Finding out I got Diabetes. Asking myself if I'd be able to have a "normal" life and even do physical therapy. It may seem easy to say "sure, why couldn't you" - but my life had been flipped upside down. Everything I knew was different now. Things were harder. And getting insulin was a very real issue on top of the strain of actually managing my disease.

I started crying last night because I have fought this fight for so long. I have struggled for so long. I've counted expired boxes of insulin in my fridge and turned to the black market and begged for medication to keep me alive for so long. I've gone without for so long. I've cried because of it. I've prayed to God I'd have enough. I started this journey knowing I'd have to have faith to get through, and it hasn't been easy. My faith has been tested for years. And I'm tired. I'm tired of that fight. It's made me stronger, but for so long I've used those expired pens and recalculated my insulin doses alone because doctors aren't affordable to people without (or without good) healthcare. This isn't to garner pity, it's to say that I've run myself ragged with fighting, I feel like I've fought the good fight, and for the first time in my life - I'm breathing a sigh of relief, because my God, I'm here. I've made it. 

Passing my boards means for the first time in a long time, I can see a doctor consistently. Passing my boards means I can have not expired insulin. I can go to the pharmacy and pay a reasonable copay and I can have insulin every month. I can get a pump... a CGM... I can have resources. I don't have to beg for medicine. I don't have to rely on samples. I will be provided for. I will have stability.
Stability... that's something I haven't had in a long time. Just the knowledge that I'll have the resources to take care of myself month after month is enough to make me dance in joy. I have never had to go without, thankfully, but it takes a toll on you - worrying, month after month who you can ask for more insulin or whether there will be any in a few months.

God did provide for me every step of the way. He gave me an incredible doctor who prescribed me as much as she could every month while I had medicaid. "You'll need it someday," she had told me, and she was right. This doctor saved my life - it was because of her that I had enough insulin to last me through the years. They were pediatric endocrinologists, but they let me see them until I was 21. They always prescribed me more than I needed. I never went without, because of them. People have given me insulin when diabetic relatives passed away. It touched my heart that through their pain, they still thought to reach out to me and give me medicine. Someone gave me almost 6 months worth of insulin once... another person gave me almost a year worth of test strips. Support groups online for people like me made sure I didn't go without. Every time I doubted I'd have enough, someone was there, with samples or medicine here and there. This is the world of bad healthcare: people have to do these things. I had to do these things. I'm not happy about it, but I was always provided for. And when I had to pay for medicine - God helped the business I started to flourish, and he gave me enough business to save for what I needed. Things may have gotten hairy sometimes, but I have always had enough. Always.
In short, God is good. I'm blown away by his provision over the last few years. It's been a hard road, and an uncertain one. It tested me more than I ever thought possible. It's made me a fighter, perhaps a little too much so. But through that I came out and I survived, and I know I can survive anything in my future after all I've been through the last few years.

Today is very much a day to celebrate, to breathe a sigh of relief, and to let myself relax after years of obstacles and hurdles that tried to stop me from getting here.
I by no means think that life will be a cakewalk from here - I know that my first year of treating patients will be a huge learning curve that will test and challenge me. But this is a challenge I will happily step up to.

Today, I passed. Today, I have a job. And I hope that I can live my whole life in thanks of all of the blessings God has given me up to this point. I hope that I can live my life helping others, like others helped me. Today is a good day.

My Normal, Not-So-Normal Diabetic Life

Yesterday was a fun experience for me. One of my old professors from Mercer asked me to come in and volunteer for Diabetes foot lab. This is a day that students get to practice performing diabetic foot exams on real patients -- reflexes, sensation screen, ROM, foot strength, ulcer screens, temperature checks, and ABI (Ankle-Brachial Index, a measure of your foot circulation). I arrived to a group of what appeared to me mostly Type II's. One woman turned to me and asked me if I was with the foot lab. "I am!" I told her. "Oh, yay, I'm not the only one!" She continued to chat with me as we sat on the lobby couch. "So are you a student?" One of the people across from me asked. "I used to be. I just graduated! Now I'm the patient!" "You must be Type 1," he said. I told him I was. "Do you have a pump?" I nodded no, I didn't. "My insurance doesn't cover one. But I'm hoping, if I pass my boards and start working soon, that I can get an Omnipod. It's tubeless!" He and the other lady sounded very impressed by this. I couldn't blame them - that was my response when I found out that pumps were tubeless, too. When I was diagnosed, which in the world of medicine (6 and a half years) was a long time ago, pumps were attached to you with tubes. This can make things like swimming and showering and dressing other activities difficult. I feel like I wouldn't really mind if my pump was tubeless. I had tried the sample my diabetes educator had given to me back in April. Unfortunately, it was just a sample, so I didn't get to insert it - the part that really scared me. They used to have really big insertion sets (see below) and I'm sure they still do, but the Omnipod actually inserts itself once you turn it out. Not going to lie, that scares the heck out of me. Way back in the day, your girl here used to be very afraid of needles. Now I'm only a little afraid of needles. Meaning, I still look away and get anxious when I go to the doctor's for a shot. I hate getting blood drawn. And the way I get around dealing with injecting myself is simply by doing just that - doing it myself. That way it's predictable and at my own pace. I don't like other people doing it for me. I suppose I'll get used to it if I get the Omnipod - it'll just be a challenge for my fear.


"Are you using insulin pen needles?" I asked the woman beside me. "No," she said. "I used to. I used to have good insurance. Now I'm on syringes and vials." "Me, too," I told her. "Or really, anything I can get my hands on!" We laughed a little at that, mutually understanding of how difficult this disease can be financially on people. We deal, but life gets a little harder for it.

The sensation on my feet checked out just fine. I don't feel the monofilament on my heel quite as much (a measure of protective sensation), but my heels are almost all callus from years of dance and gymnastics and barefoot walking. My ABI was above 1.0 on both feet. I was very glad about both of these things - I feel as though I'm hyper aware of my body now. I'm always worried that maybe I don't feel as well on my toes as I used to, or that if my feet fall asleep it's definitely neuropathy. A lot of my research in graduate school was on preventing and treating diabetic peripheral neuropathy. I've spent a lot of time designing exercise programs and researching the programs with the best efficacy - lots of swimming, balance exercises, ankle/foot strengthening, and progressive walking and treadmill programs. I recently started running also in hopes of keeping my sugars well controlled and keeping my feet strong. I desperately want to stay healthy.

It's still hard. I called the pharmacy to refill my insulin this morning. "Just the Lantus," I told the pharmacist. The (long acting) Lantus is fully covered. My short acting Novolog (or Humalog), that you take at mealtime, is still only partly covered. "You're just refilling the one?" She asked. "The other one is a little expensive," I told her. "Well I'd hate for you to only be taking one... oh, that this expensive." I laughed. "It's ok, I know." It wasn't her fault. I had managed well enough thus far. I still held my hopes up that I'd pass boards and get health insurance at my job soon. One can only pray...

Life is what it is though. It's a daily struggle to make sure you have the means to get your medicine, it's a daily struggle to eat well and keep good blood sugars. You toe the line between a normal life and a life completely flipped upside down. Struggling to maintain normalcy. My hopes in writing these blogs is to help spread awareness for the kind of daily lives that people like me lead. Whether that means someone with Diabetes reads this and knows they aren't along, or people without it read it and understand why health care policy is so important for the sick, I'll keep writing. I always will - if I'm stuck with this disease, I might as well be a mouthpiece for it, right?

My Experiences With the Harsh Reality of Healthcare

One of my Diabetes friends posted on my wall this morning, saying "you might be interested". It was a screenshot of a post from a Graduate student looking to interview Type 1's who have had limited access to insulin for her thesis. I sent the woman in the post a message, a little more excited than perhaps I should be about gushing about the last few years of my life.

It never fails to evoke an emotional response, those last few years. Nothing makes me have a lump in my throat or watery eyes faster, in fact, than telling this story. It's a story that has been told through the form of posts on this blog here, but that is one of my only outlets for my story. I couldn't tell a lot of people in school because I was supposed to have health insurance throughout all those years, or health insurance in the state I was living in. My struggles therefore had to be a tight-kept secret to many. 

I just got off the phone with my endo office, canceling my appointment because I owe a balance that I wasn't told my school's insurance wouldn't pay, and I'm worried that since I lose my school insurance next week, I'll be responsible for it and the full cost ($700) of my endo visit. Not having insulin is a stress, yes, but so is having $1000 in outstanding medical bills. This scenario encapsulates a lot of my struggles throughout the year into one big nutshell:

Not having guaranteed access to medicine is stressful. But so is having more medical debt than you can pay.

It's easy to be a healthy person and say, "you should just bite the bullet and pay it. I mean, what can be more important than your health?" Or, "Just take out more loans... worry about paying them later."

That's great, but unless you're the one saddling yourself with the thousands of dollars in debt - you can't understand the pit of despair that feels like. I've tried for years to save a nest egg, put away in case of a rainy day. It's come in handy. When I wrecked my car, bought a new car and that one died too. Car troubles over the year. Moving to grad school. The $6000 emergency room visit. Not being able to work as much in grad school. It eases my troubles to know I have money put away just in case of these things, even if they aren't fun expenditures. But it also means I've mindful of where I put my money, and I don't like having outstanding debt from my last two doctor's visits, let alone the debt I would have had from years of these visits. I guess that's something I kept in mind as I lived this struggle for the last few years.

When I went to Wesleyan, I had Florida Medicaid. It was the only thing that would pay for my doctor's visits and my insulin monthly. My endos were very understanding of me only being able to make appointments in between semesters (two visits a year). They always filled my prescriptions and I could email them my glucose logs. My control was good. Wesleyan didn't technically allow this insurance because it wouldn't cover me in Georgia. But they didn't understand that I couldn't be a resident, because students with student addresses can't be residents, and they didn't let students live off campus, so I had no choice. I could buy their insurance, but then I'd lose Medicaid and their insurance didn't do much in the way of covering the expensive prescriptions or specialists I needed for my condition. Student insurance, as it may not come to surprise you, is very subpar. I somehow managed to enter the insurance information in the system in a manner that they approved of, saying I had Medicaid but not specifying the state. I banked on the fact that Medicaid never answers the phone, so if they tried to confirm that I had Georgia Medicaid and not Florida, they'd never actually talk to a human being unless they wanted to wait 2-3 hours. 

And it worked. For 3 years, I was able to keep my insurance. I was very young; I moved to Georgia when I was 17, and while I lived in fear at 18 that they'd take the Medicaid away, they actually let me keep it until I was 21. And my endo always prescribed me full boxes of 5 pens each of insulin - I was able to stockpile all of the extra throughout the years. 

Time goes on, and I move to Atlanta for graduate school. I'm 20, and I know I'm going to lose my insurance soon. I go down for one last visit. I'm too old to see my pediatric endocrinologist now, so I have to make a visit with another endo. There is only one in the entire Orlando area that takes Medicaid. It's understandable; Medicaid hardly, if at all, reimburses physicians. It's basically a charity visit. But I still need to see someone. I make an appointment with a Dr. Lorenzen 5 months in advance because that's the soonest I can see her. It's August 2014 when I drive down to see her. The first thing she does is ridicule me. "I can't believe you don't go see anyone more often... I don't even know why you bothered to come. You're going to be one of those noncompliants." It hurt my feelings a lot. I tried to explain to her that I was too old for the pediatric endo and she was the only one that took Medicaid and it took 5 months to get an appointment to see her. I tried to explain that I could only make the 6 hour trip to Florida between semesters to see the doctor. She didn't listen. She just ridiculed. It had been since December of last year since I'd seen anyone. My A1C was 7.5%, which was a little on the high side, but considering I hadn't seen anyone in almost a year and had gone through a brutal breakup with an ex boyfriend in February, who was still currently stalking me and causing a lot of stress (which raises blood sugar levels), I though that was pretty damn good, thank you very much. I'm a woman that does what she has to and knows how to survive. 

She only gave me one month's worth of insulin because I was apparently an awful diabetic and she didn't want to "reward" my noncompliance. It was fu**** up. And then she sent my bill to a credit agency for collection because she didn't file the Medicaid right anyways, so I was stuck with the bill. I never paid her, out of principle. She was the worst doctor I ever saw.

But that was it. From that moment on, I wouldn't see another doctor until February of this year. The first semester, I did the same thing I had done at Wesleyan to keep my Medicaid through October when I turned 21 so I could have that last visit. Insurance was $900 a semester at Mercer, which meant I would have to take out a separate loan just to pay for it, since it exceeded the federal loans I qualified for. In addition, it didn't cover my prescriptions past $500 per semester. My insulin cost more than that per month. The insurance, in short, was essentially useless for me. I even sat down and did the math with the head of my PT program and we both agreed it was a very poor option for me.

I made a decision. I counted the boxes of insulin I had saved up in the fridge. I did the math.

And I had enough to last until May 2017. Sure, some of it would be expired, but as long as it wasn't cloudy, I was going to use it.

And until Fall of 2016, that it what I did. In summer of 2016, Mercer finally caught on and realized I 1. Didn't have Medicaid anymore and 2. Florida Medicaid wasn't considered adequate coverage in Georgia and made me get their insurance. It was fine; I'd been on this ride long enough. To supplement my dwindling supplies, I was having to resort to charity and the goodness of others to give me things I needed. It was getting harder. I needed to see someone. And that brings me to my endo visit in February (I have a post on it on my blog here). 

Has it been easy? No. I heard some of my classmates talking shortly before we graduated about being worried about not having health insurance over the summer. I don't downplay that that may be stressful for a lot of people. It's just... if that's stressful, think of what it's like to have a chronic illness and not have insurance for over two years. It's been a game of luck, a game of relying on the goodness of others, and a game of quite frankly, testing my mettle as a human being bent on survival. I may have made things unnecessarily hard on myself, but frankly I'm not really sure I did. I would have spent thousands on insurance that did me no good and then still spent thousands on insulin not covered for it, which meant I would have just used my insulin supply instead of buying new stuff anyways. It's been hard, after my supply has started to dwindle, but I've been very thankful to have help from people in all sorts of places. It's been hard working every single weekend in a program that goes just short of forbidding you to work in the program because of how academically rigorous it is. But I did it, and I did what I had to to survive and make sure I had what I needed to live. I juggled work, school, and illness and I came out with my degree. And yes, it meant I didn't get the best grades. I wasn't the most involved in school activities. But I survived. 

This is the reality of the American healthcare system. It has forced me to get insurance that doesn't cover what I need. It has still failed to make my insurance affordable, because even looking into other options, they don't make subsidies available to students who don't claim income above a certain level. And insulin prices keep raising simply because companies can raise the price - even though Banting, the man that discovered insulin, sold it cheap to allow people like me to have access to it back in the 1920's. This is what having limited access to insurance and insulin is like. And I guarantee you that you have, or you know someone, who has experienced something like this too. Making the choice between savings or medicine, debt or healthcare, going with or without. Not being able to do what's best for your health not because you don't want to but because it's a cost benefit analysis that costs you dearly either way. Getting, sometimes, blamed or ridiculed by healthcare practitioners that don't seem to understand it.

And while this battle is (hopefully) going to be over for me when I pass my boards and get to start working at my job with benefits, I hope to God that this changes someday. Because the things I have had to do for survival, quite frankly, sucked ass. And I would never wish those struggles on my worst enemy. No one deserves to go through it, but we with chronic illnesses, we who are sick, we do. And you all need to know how hard that struggle is.

Business: the Good, the Bad, the Ugly

Last night, I realized that, despite having been a children's entertainer for years, there's a first for everything. I read the email from Paypal in disbelief that they'd decided to believe the client that stated the charge (for the deposit they paid for me) was unauthorized. Even though the card matched the name and address that they gave me and that I went to do the party at. Even with 2 witnesses, a booking agency to vouch for my being there, and a contract as well as an entire written conversation where the client agreed to pay the deposit and then confirmed paying it. Paypal and the client's bank still decided to refund them, leaving me with a $70 loss. I was pretty upset about this, vented a little to some other face painters, and set out trying to contact Paypal again to reinvestigate the case. I tried to reach out to the client (with no avail, of course). Thieves are going to be thieves I guess.

Thankfully, aside from one bounced check I've never had any issues, but it was a reminder to me that you never know if you're going to deal with a bad person, no matter how prepared you feel that you are. This, sometimes, is a lot of the ugly sides of business - you deal with these things, a small percentage every year gets chalked up to bad debt that you simply have to eat, and you move on. There's days when it feels like all 5 of the clients I've been talking to decide to go with other entertainers after stringing me along for a week or two. Or who flat out tell me I charge too much (I charge the same as any reputable entertainer here). People are going to be people. It hits you a little harder when you're personally invested and your livelihood is at stake. It hits you a little harder when you don't clock out for the day, but you dwell on this stuff because it's yours to dwell on.

There's the days that go on forever, too. It's 10:45, and I crawl into my car, my Rapunzel skirt soaked with water, my ballet flats damp from the rain. I've hauled my bags out in the dark and rain alone, and I had struggled to get the heavy bags back into my car. I can't help but think of a lot of scenarios like this one that have played out through the years. People are sometimes impressed at the level of success I've had with this business. (Long story short, I already have savings and investments that I started at 18). Business allows you to be incredibly successful and achieve a lot. 
But it came at a price. I have sacrificed birthdays, holidays and time with friends to grow my business, to take that "really good gig", to put some more money into savings or make sure I can pay my bills each month. I've worked my birthdays, I've missed family dinners, parties, fun weekend events. Much to the chagrin of some less understanding friends... heck, I even had an ex mock me and say I didn't know what it was like to have a real job until I did retail or wait tables. He'd say it was unfair of me to make so much more than him, and mock me for working even though that same work, while it required me to work some holidays, paid his bills! (And to him I politely say, f*** you. I never worked in the rat race of retail/restaurants because I didn't have to. Start your own business if you can't deal with that). All that to say though, you've got to tune out the unsupportive people if you have goals and dreams of your own. The people that will love you, will support you.
The weekend just isn't really my time to have fun because I have work to do. Worth it? Yes. Is it a sacrifice? Also yes. I don't get an off day unless I give it to myself, and if I do, there's no paid time off. I accept the fact that I'm losing out on money. Which is fine, but you have to plan and save for those weekends, or those slow weekends or slow seasons (cough, summer).

Having a business has been one of the most rewarding ventures of my entire life. It has taught me SO much about myself. I started as a shy 17 year old, putting ads on Gigmasters, even Craigslist, to drum up business. I think I got 3 gigs my first summer, that was it! I knew no one, I had no clientele, and I was entirely new at this. My heart hammered every time I called a client to follow up with them about an event inquiry. I tried to sound as though my voice wasn't shaking, tried to sound confident, even if I wasn't! That was my life for years. Trying to be confident, even when I wasn't. I laugh now, but this was a time before I even had a working GPS on my phone. I used an out of date Garmin and refused to buy a charge cord for it, so I turned it on, wrote down the directions, and then turned it back on every 30 minutes or so on long car rides, only leaving it on once I got close to my destination. I made a lot of wrong turns back then...
I was still learning how to twist balloons. I'd stay up until midnight practicing some nights. I'd play around with my princess makeup, trying to make it as good as I could. I'd cram to get all my homework done during the week so that I could devote the weekends to work.

Fast forward a year, and my business was actually starting to take off. I had consistent gigs every single weekend of the year. My first year, I'd get 2, maybe even 3 bookings every weekend - I started to get 2 or 3 bookings on Saturdays and Sundays. The most events I've ever done in one day was 5 (and I don't recommend it). I was actually confident on the phone now. I had learned (the hard way) to take deposits to avoid getting stood up at parties. I was starting to build clientele and get good reviews online. These reviews have helped me to get gigs every year after that. I built a reputation and I worked hard to make people happy. Sometimes this meant staying a little late at events, or going the extra mile to dress to match a theme or learn to make a lifesize Dr. Seuss balloon with lifesize matching Thing 1 and 2's just to make a client happy. Going the extra mile, keeping a smile pasted on your face and cheer in your voice even when you're dead tired - these are, I will always firmly believe, pivotal to giving customers a good experience. It's my way and it's worked, at least.

But at the end of the day, as I grow closer to taking less weekend events and focusing more on full time physical therapy, I can't help but breath a little sigh of relief.... does this sound bad? I don't know. My mom calls it the hustle and it's so true. This business, at least, it is a hustle. It's a constant string of worrying where your next paycheck is coming from because you're at the mercy of clients deciding to book. Weekend after weekend, you drum up gigs, hoping you have enough to fill the quota for the month. And most times you do, but there are slow months and times when it's not as much as you would have hoped. There are no benefits, and you're constantly fighting out other competition who has better costumes than you or cheaper prices or there's simply 20 other people for clients to choose from. Despite my having incredibly good reviews and years of experience, that still happens to me. Do not get me wrong - managing a business has changed my life. My mom raised me to be an independent, savvy and driven woman, and these are things I identify with. But people giggle a little when they ask me why I wouldn't want to be a princess forever, and while I know they're joking half joking, the answer is no, I don't want to be a princess forever (even if I'm 23 and still look 18). That hustle is hard. I don't have health insurance. And I make good money, but I'm tired. Having a job with a guaranteed paycheck every two weeks, paid vacation (what!) and actually being able to afford healthcare is going to be a welcome change. No, it's not working for myself. Yes, it's full time all week. I welcome that though,because it's security: something I haven't had in a very long time.
Am I giving up business ownership? Heck no. I'll still do weekend parties - it's all extra income to pay expenses (or save up) with. More importantly, I love it. I adore people and different cultures and working with children. It never fails to make me happy. And if you ask me what my 10 year plan is, I'll excitedly tell you that I would like to operate my own home health company, because I have a passion for traveling to people's homes to help them, be it parties or physical therapy. Business ownership is fun, scary, exhausting, and it's also doubly rewarding because your successes are all done thanks to you. 
There's good, there's bad, there's ugly to everything, especially business. I'm just glad I've been blessed enough to live that and have a choice to have a secure and rewarding job as a physical therapist all before the age of 23. It's taught me a lot about life and what I want from it. The drive will never go away to succeed and be my own leader and push for excellence - but I'm happy I get to have a weekend off every once in a while. To have stability and healthcare. That's been my dream for a very long time.