10 Life Lessons After One Year with Type 1 Diabetes (The Good, the Bad & the Ugly!)

May 14, 2014: 
"You have type one diabetes."

May 14, 2015: 
I've got a ton of visible little holes in my fingers from the 2,190 finger pricks I've done in the past year, and the 1,400 insulin injections usually leave pretty little blue bruises on my thighs and stomach. I'm a regular at the pharmacy and getting my blood drawn is a normal thing for me these days- I don't even pass out from it anymore!

I've counted thousands and thousands of carbs (not calories) and spent over $1,500 from my own pocket (after what I thought was good insurance) for doctor visits and medications. I make decisions on what and when to eat, how much insulin to give, and what kind of exercise I should do based on an educated-guess-kind-of-a-system that sometimes works and sometimes doesn't. And I live with type 1 diabetes 24 hours a day, 7 days a week and 365 days a year.

The way I see it, diabetes is a lot like coaching basketball (which I have been doing for the past 8 years). Basketball is an avenue I use to teach kids about important life lessons. Diabetes has turned out to be the same kind of avenue for me. It's my path, my journey, my fight- and it's only a small part of who I am at the end of the day.

But even with all these numbers and constant reminders that I no longer lead a "normal" life, I want to share with you my top 10 reflections on my first year with type 1 diabetes, because it's not all bad!

 
1. Hunger and Low Blood Sugar are NOT the Same Thing (but they sometimes feel that way...) 
I'll admit it- I'm one of those "hangry" people that suffers in intolerable ways from being hungry. Headaches, mood swings, sweating, shaking.... Sounds like an episode of hypoglycemia, right? If I've ever let myself go too long without eating, I'll find myself with these symptoms and in a panic, I immediately check my blood sugar convinced that it must be low- and sometimes it is. But sometimes, I'm just fine. Be patient, recognize the difference and as much as possible, be prepared to eat or treat either way.

2. Low Blood Sugars Aren't a Treat, and You Shouldn't Treat Them with a Treat 
I started wanting to induce lows so I could have some cookies because I felt like that was the only way I could indulge in some of the sweet treats I used to enjoy. But to be honest, when my blood sugar is low, I don't even enjoy the cookies because I'm usually shoving my face full of them to try and bring my blood sugar back up as fast as possible. Treat with glucose tabs or shot blocks and have a plan so when you're low you don't panic in the moment.

3. You Can Pretend You Don't Have Diabetes, but it Doesn't Make it Disappear
This is the honest truth of my disease and for everyone with type 1. I like cookies and ice cream just as much as you and there are definitely times where I just don't want to count the carbs and dose the insulin. I just don't. But (and this is a BIG BUT- no pun intended)- with anything in life, it works out better for you when you accept the truth of the matter and face it head on. Don't lie to yourself because it doesn't make the truth any less real.

4.  YOU Must Be Your Own Advocate and Do Your Own Research
If you don't like your doctor, change doctors. And don't feel bad about your decision. This is YOUR life. Your doctors will give you a plan but they don't live with it like you do- trust your instincts and do your own research. Be responsible for your own self. I know it's a mountain, but you are capable of this!

5. Diabetes Doesn't Have to be a Death Sentence...
...but It's Still Okay to Cry
A couple weeks ago I tested my blood sugar and even after I thought I had done everything right, I was still high as a kite. Insert <<insta-tears>> here. Why me? Why didn't it work? What did I do wrong? And the most important question... why can't I just enjoy Mexican food anymore?! It's okay and normal to feel frustrated- crying is acceptable! So is hating this disease. It's awful. It's stressful. And it never sleeps or lets up. Accept it, feel it, live it and then learn to move on from that moment.

6. Discipline is Crucial and Don't Let Others Make You Feel Guilty For It 
You don't eat the homemade cookies at work (here I go with the cookies again...) because of what it will do to your blood sugar, not because you are worried about gaining a few extra pounds. Don't let others make you feel guilty for choosing a salad over a sandwich. If you don't want to eat the carbs that day, don't eat them. Their issues with food are not yours- let them go.

7. Learn to Trust, Let Go and Laugh (for life cannot be controlled)
Relying on something to keep you alive is so scary! When I've accidentally left the house without my insulin or testing supplies, I've never felt more dependent in my whole life. And even though I'd like to think I can go through life jumping all these hurdles alone, feeling vulnerable in those moments has taught me how to let go and trust a bit more in all areas of my life. It's okay to rely on other people. Build a support system and cherish those who are a part of it.

8. Make Type 1 Friends, but Try to Find a Connection Between the Two of You That Isn't Diabetes Related
Plain and simple, because you are not defined by your diabetes and there is so much more to life.

Speaking of life...

9. Life is Short, With or Without Diabetes (so make sure you cherish every moment)
One day you will wake up and there won't be any time left to do the things you've always wanted to do. (-Paulo Coelho) This is true for everyone, not just us type 1's (but don't let diabetes steal your sunshine). Learn to truly LIVE and to truly LOVE- the possibilities are endless.

10. Don't Ever Accept the Status Quo that We'll Have Diabetes Forever
**It's a dangerous thing to be content with something you're not happy with. Read that line again. And again if you have to. It's a dangerous thing to be content with something you're not happy with.

I encourage you to get involved in a cause and look into donating or volunteering your time and/or services. Be the voice of the future. Just because there isn't a cure now does not mean there will never be one. We have the power to get involved in events that raise funds and awareness, that support research in finding a cure. Don't rely on the doctors and scientists to be the only ones actively seeking new cures and treatments. You don't have to have gone to medical school to influence the diabetes community. There are plenty of ways to get involved.

Be an active participant in your own life and find a way to see the silver linings that are always around us!

xo,
T

The Scary Truth about Insulin Induced Lows

If you have ever had a hypoglycemic episode, you might feel kinda like the monster from Frozen. Seriously, this is me with low blood sugar. Ask my sister.

Since my diagnosis seven months ago, I've been able to keep my blood sugars pretty stable with the occasional high after special occasions like Thanksgiving or my birthday party. I take two units of Lantus in the morning and two units at night. I only take Novolog if I'm over 200 before eating- which has been rare as I've tried to stick to a very high protein/high fat/low carb diet (less than 100 grams a day).  Couple that with consistent exercise, and I've been able to maintain an average of 4-8 units of insulin per day and last time I went in, my A1C was 6.3. Not bad, not bad at all.

Until last night. I had some pita bread with my chicken and squash for dinner and three hours later, I was at 238. The last two times I've taken Novolog (after Thanksgiving dinner being one), NOTHING happened. Four hours later, I was still really high and had to take more. So I took two units, felt fine, and went to sleep. I woke up at 12:30am completely soaked in sweat. I scrambled to find my glasses and my meter (turns out being blind and diabetic isn't such a great combo during nighttime hypo moments) and checked my sugar. As I was waiting patiently for the five second (or lifetime) delay, I felt myself getting worse by the second. Then the number popped up on the screen. 48.

I have never been lower than 68 since I started testing. Those lows were usually exercise induced and I was prepared for them. But 48?! I couldn't believe it. So, like any newly diagnosed diabetic, I binged on ghirardelli dark & sea salt caramel chocolate squares. After the first one, I didn't feel any better. So I ate another. And another. And then I looked at the nutrition and saw that three squares was only 23 grams of carbs. So I had one more. And then I ate some pita bread. I was desperate to get my blood sugar back up and had no idea how much I needed to feel better.

When you're diagnosed with diabetes, they don't tell you how much sugar you actually need to correct a low. They should give you some kind of timeline, like eat a piece of chocolate and test 15 minutes later, and then if you're still low eat another. And maybe some doctors do tell you this- mine didn't. On top of that, you're in complete freak out mode that you're going to go into a diabetic coma and have to call the paramedics and the only thing you can think about is that number on the screen going up- and FAST.

Needless to say, I woke up this morning worse than I started last night. 282. I decided I would take two more units to level off and then have a normal (ha!) day. Why I decided to take two more units is beyond me- I guess I thought that I was higher than I was the night before and I was remembering how the Novolog doesn't always seem to work. An hour later I was at 108, which was perfect. Made myself some eggs and coffee and packed up my bag for work. Twenty minutes later, I was dripping in sweat once again. Shaking and blacking in and out. Tears were streaming down my cheeks as I pricked my finger and struggled to align the drop of blood with the testing strip. Nothing is more frustrating than not being able to function when you know you have to in order to save your own life. (I apologize for the dramatics, but it's true!)

5. 4. 3. 2. 1. A new number popped up. 44. This time, remembering how I screwed myself last night and not wanting to soar high again, I ate one Clif shot block (which I use for long distance running training) and waited 15 minutes. By the way, those 15 minutes move about as quickly or as slowly as molasses. Or quicksand. Or a goddamn snail trying to cross the road. I'm over here, face literally dripping sweat beads onto my lap, hands shaking, shirt soaked through once again and I have to wait 15 minutes. 77. So I eat another one. My panic turns to a relief that leaves me in tears; tears of frustration, tears of gratitude that the worst is over, and terrified tears. Lows are scary.  And, I've spent the entire day feeling like I have the flu, minus the whole fever/nausea thing.

This is the reality of living with type one diabetes. I don't tell you all of this because I want you to feel bad for me. I don't feel bad for me. I tell you this so you understand that there are repercussions for every single thing I eat. It's just a small piece of cake right? Just one piece of pizza? Just take some insulin with it and you'll be fine, right? Too much insulin or a wrong guess on how much I should take could kill me.

 After this year's Thanksgiving dinner where I ate the same foods as my sister (AND I even said no to my own garlic mashed potatoes) my blood sugar was 335 and hers was 108. The point is this: A diabetic doesn't get days off. You don't get to splurge on holiday meals without feeling it in one way or another later on. And yes, the doctors tell you that you can eat whatever you want as long as you take insulin for it and to an extent, I believe that to be true. But what happens when insulin doesn't work one time and the next time you take it, you bottom out and either end up in tears or in the hospital? I feel like a guinea pig when it comes to treatment. Diabetes is unpredictable, misunderstood, and insulin injections paint your stomach with bruises bigger than quarters.

I can positively say that I am now healthier because of diabetes- but it hasn't been an easy road. I can only speak for myself but I think as a diabetic, we just want people to understand that it's never just one piece of cake. And insulin isn't the answer to all of our problems.

It's all one big learning curve, and I'm determined to not be defined by diabetes. I still make hot cocoa on cold, rainy nights and I still bring cookies to share at work. I still eat pizza and I'll probably never give up egg nog (holidays on the brain to blame for that one). Life is too short to be controlled by a number and it's too beautiful to live without some indulgent experiences. In fact, our experiences are what makes our lives so beautiful.

So cheers to YOU and living the best life you can every single moment. Cheers to not beating yourself up over a bad choice or a bad day, but to understanding that we are all just painting our own pictures with our own colors.

Lastly, thank you to my sister who sat by my side this morning to make sure I was ok and in turn, forgot her coffee on her dresser when she left for work. Love you Momo!

Be kind, love someone today and Happy Holidays!

xo
T

Love Letters

an excerpt...

My dearest,

Every minute that goes by without you is another minute that reminds me I may never see you again. I know it’s not what it should be, but I know what it was and what it could be. I haven’t given up on us, even though you told me it’s over. It’s been hard to sleep because you appear in my dreams over and over again. In fact, we went paintballing just the other night. 

You’ve given me such a beautiful gift that you deserved equally from me a long time ago. Things have changed since then- but they had to change for both of us, I believe. There are so many things that have happened in the last six months that have given me a perspective I didn't have then. I want to share that with you. And I know it may be too late to ever get you back now, but I'm still hopeful and I know we can make it work. When I envision my future, it’s you that stands out so brightly on the horizon. There's no one else I want to make happy. Still love you forever.

xo.

Love Letters from an American Psycho

an excerpt...

My dearest,

I drove by your house last night. Your door was open and your lights were on so I knew you were home. Even still, I drove through the alley to see if your car was parked. It was, and a surfboard lay peacefully strapped to the top. For a moment, I contemplated leaving a note, but I'm still trying to respect your wishes, even though you appear in my dreams over and over again and I can't get you out of my mind. I really miss you. More than I ever thought I would.

I had a dream about you last night too, which wasn't the first and won't be the last. I drove by your house again. I know it's crazy but it's the only way I feel like I get to see you, even if only for a moment; and even though I don't really ever see you. Just pieces of your life. You don't return my calls or texts. I feel like you hate me. But I drive by still, just to see a little piece of you. In my dream I had to park quickly behind another car because I saw you coming outside. You filled your tires with air and then sprayed them down. I thought you wouldn't see me, but you did. And as I hid in my car with my head down praying to God you would walk away, you stuck the hose through my sunroof and sprayed me. I'm drenched and I look up at you with an unapologetic half smile and I just shrug my shoulders. I'm so relieved to finally see you again.  Even under these circumstances, you smile at me and it calms my nerves enough to take a breath. We get in your car and you just put your arms around me and hold me, tears welling up in both of our eyes. You tell me you're so happy I still think about you. I think you thought you were out of my life for good. No words come to my mouth even though thousands of them are flying through my mind. I think back to the dozens of letters I've written you in the last few months. They sit sealed up nicely in one envelope in my top dresser drawer, collecting dust because I promised myself I would never actually give them to you. And even with all those words, I now have nothing to say. You're happy to see me. I thought you hated me. I'm in your arms, where I should have been all along. And right in that moment I make a promise to myself that I would never let you down again and that as long as I live, I'll do anything and everything in my power to make you happy. Things have changed. We have changed. But our love for each other remains the same. I was wrong for a lot of things, and I am so incredibly sorry. Wish I had the chance to tell you that.
I woke up confused and sad, knowing that none of it was real. It felt real. I wanted it to be real. I would have given anything for it to be real. I love you, and I hope to see you soon. Most of all, I hope you are truly happy.

All my love. xo.

The Diagnosis

I was diagnosed with Type 1 Diabetes exactly two weeks ago today, on May 14, 2014. After a three year struggle with a ton of random symptoms and no answers, I finally got the phone call that would change my life, for the better I'd like to think.

Three years ago, I got really sick. Now when I say sick, I'm talking 103 fever for a week, unable to eat, couldn't keep food or anything at all in my system, plagued with shakes and shivers and sweats. I lost 20lbs and couldn't gain it back for a year. You can read more about it in a previous blog post here. The doctors just said it was a nasty virus, that I had parasites. After that, I began my three year battle with negative test results and being treated for things I didn't have. All of a sudden, I had skin rashes and welts, was being treated for stomach ulcers and undergoing an $1000+ endoscopy, and saw a GI specialist. All tests came back negative. Those symptoms started to go away about a year after they began.

Then last August, I noticed swelling in my left leg. I had been at the lake hiking and camping and wakeboarding and thought maybe I pulled or twisted something, or was bitten by a bug of some sorts. I came back to LA with the swelling and it never went down. I ended up seeing a podiatrist, an orthopedist and had an ultrasound for blood clots, an MRI and XRay to look for torn ligaments or broken bones. Nothing hurt, and all those tests came back negative as well. I then reached out to a vascular surgeon who suggested I see a lymph specialist. I probably would have spent more time in her office had they accepted my insurance- and thank God they didn't.

About six weeks ago, I started telling my trainer about my leg swelling and other symptoms that I was experiencing; waking up in the middle of the night drenched in sweat, sudden shakes and sweats and blacking out in the middle of the day, etc. It was then that she told me she was diagnosed with Type I Diabetes about six months ago and had been having a lot of similar symptoms. I still didn't believe that I had diabetes. One Sunday afternoon, I was walking in Venice with my sister and another friend and I had another episode where I started to get shaky and sweaty all of a sudden. Once again, the conversation led back to diabetes. I decided maybe I should go in.

I made an appointment with my primary doctor to get a blood test. When I went in and showed her the swelling in my leg, she prescribed me blood thinners and referred me to a bone and muscle tumor specialist and ignored my request for a blood test. It was time to take matters into my own hands.

I called the endocrinology department at UCLA the next day and made an appointment to get my blood drawn. My initial blood tests came back with higher than normal blood glucose levels and my doctor told me I had "prediabetes." WHAT?!

She ordered another round of blood tests to be done (which were horrible but I'll save that for another post). She was looking for certain hormones and antibodies that would indicate if it was Type 1 or Type 2. (More on the difference between Type 1 and Type 2 in a a later post.) To make a long story short, she called me the morning of May 14, 2014 to tell me that my tests came back very positive for Type 1. I went in to see her that day and was immediately sent to the pharmacist where I left with over $100 of insulin and insulin testing supplies, a blood glucose meter, and no direction on how to use any of this stuff. 

To be clear, I had been praying for something to be positive so I could finally have an explanation for all the things I had experienced over the past couple years. When I got that phone call, I was actually really relieved. It's funny to think that relief was my first emotion but in a way, my trainer had prepared me for this sort of diagnosis. I felt like it would all be ok.

Then I had to start telling certain people- my family, friends and my work. Let me tell you something- the worst part about this diagnosis isn't that my pancreas doesn't produce insulin correctly, it isn't that I could gain weight from the artificial insulin I have to use now, it isn't that I have to prick my finger 6 times a day or inject myself with insulin every night or even the fact that I have a potentially life-threatening illness. The worst part of it all is that all of a sudden I'm in the spotlight and receiving more attention than ever before.

Let me clarify. I feel tremendously guilty and extremely ungrateful for saying that. I am so beyond grateful for the outpouring of love and support I have received. I guess what I mean to say is that everyone has their own struggles that they deal with and mine is no different. People assume I must be "devastated" with such a diagnosis and the thing is, I'm not. Life goes on and nothing has changed for me except for a few finger pricks and injections here and there.

The truth of the matter is, I don't want my peers (close family and friends) to begin to resent me for the attention this disease has garnered for me. I do need their support and understanding because there will be days where I absolutely don't feel well. But don't we all have days like that?

I didn't ask for this to be a part of my life, but it is. In fact, I begged people not to treat me any differently because I don't see this as an "uphill battle" that I now have to fight. I see this diagnosis as a part of my life that maybe one day, with any luck, will inspire others. A life that might grant insight and shed some light on the illness in adults. A life that perhaps one day could provide some kind of scientific research for doctors that could help save someone else's life. God has a plan and it's bigger and better than any plan I could have ever had for myself. I'm strong enough to handle this and brave enough to do it with a smile on my face, and it's all because my strength comes from the Lord. This disease, while potentially life-threatening, is no different than the many different kinds of struggles you all face everyday. This one just happens to be mine.

Life is so beautiful and even when it's ugly, there is still light. And until heaven meets earth, I am still going to live life the way He intended us to live it- full of love and rich with purpose.

The power of prayer is true and it's real. Don't waste another day unhappy- we've all got something we're dealing with and you never know when one phone call could change your life.

Lottery of the World

What would you do if the world awarded you a million dollars? I would invest, travel and write. Perhaps that's what I should be doing anyways. Write, travel, invest. Write until your heart bleeds because you've bore your soul open with the truth. Travel even when you are down to your last dollar. The riches of the world will repay you a thousand times over. Invest your time with the people who make you a better person. Invest your love everywhere you go. Invest your soul in a life that seeks to serve others. Forget the bitterness of yesterday and invest only in today so tomorrow holds a brighter future for all those whose paths have crossed yours. And never forget, a smile is the most beautiful thing you can put on. Wear it everyday.

Travel Thoughts from New Zealand

Written on my trip, March 28, 2014.

New Zealand reminds me of home, but warmer somehow. The people are older and don't seem to be preoccupied with upholding a certain image, which is such a beautiful thing to see. After living in a place for almost a decade where image is everything, it is delightful to be brought back down to earth for a moment. And maybe that's just me and not New Zealand at all. Maybe when you are around a bunch of people you don't know in a different country, it changes you. Maybe you free yourself, in a way, from the shackles that bind you in everyday life. The unknown sets you free and let's you fly. The daunting uncertainty of it all is just another false image, one that denies you of the absolute freedom in being yourself. Here, you can be anyone you want to be, but why would you want that? Because here, you can be you.