TYPE 1 AIN’T FUN

It’s been a while since I’ve blogged and so much has happened so I figured it’s time for another update! Grab yourself a cup of coffee and make yourself cozy because this is a long one, and one you won’t want to skip out on.

After 2.5 months in Uganda with Oliver, I flew home mid-march to work for a few weeks since neither of us had worked for 2.5 months at that point and we needed to make some dough to keep up with the bills back home, living expenses in Uganda, and Oliver’s ongoing medical testing and care. For about the last month and a half that I was in Uganda, I wasn’t feeling too good and each day seemed to slowly get worse. I felt fatigued beyond anything I could explain. It took everything in me just to stand up off the couch. I just thought it was being a first time mom to a really sick little boy while surviving life in a third world country, so I didn’t think too much of it for a while, but what I did know is that I have never felt so physically drained and no amount of sleep would fix the problem. We hardly slept at night, food always made us sick, we just assumed it was a culmination of the stress, exhaustion, not sleeping, and not getting enough good nutrition in my body. The last few weeks I was there, I couldn’t even hold Oliver. Literally. I physically could not pick him up and carry him.

Once I got home, I went to the doctor, and starting taking medicine to kill off the parasites. Nothing seemed to be getting better, but everyone I talked to had said that it takes months to recover from them. I did every thing possible to rid my body of the nasty bugs. Still nothing. My mom had a week off work for Easter break and I had been at home by myself for about a week at that point (after lots of friends stayed with me to help out) and was hardly able to manage on my own. To stand even for five minutes to put some food together was more than my body could handle. I was miserable from morning till night. I couldn’t believe what some tiny bugs could do to your body. So I packed up a bag and spent the week at my parents house (thank you Jesus for nudging me to do this because later on, it saved my life…literally). I spent the entire week on their couch and slept all the time. When parasites start to bury themselves into your intestinal tissues and die off is when you start to feel the worst (as if it wasn’t already bad enough) and start vomiting. Each day at their house I got worse, I had never felt so sick in my life, but I kept telling myself, this is temporary, these suckers are dying and it will be over soon. I started throwing up on the Wednesday after Easter, my body ached unbelievable and I felt like death. I literally felt like I was dying. I’ve used this phrase loosely a million times, but this time I was so serious about it. This went on till Thursday and then my breathing started to get really bad. For a short while we thought maybe it was just anxiety from everything that had been going on, missing Justin and Oliver, not knowing when I’d see them again, and all that. You guys I was breathing into a paper bag to try and calm myself down and my parents had been praying over me all day. I took a nap, woke up, and my breathing was worse. At this point I knew it wasn’t anxiety and something was seriously wrong.

I need you to understand how much I HATE doctors offices, hospitals, needles, or anything like that. The smell of hospitals make me weak in the knees and bring back so many horrible memories. Any time I’ve ever spent in a hospital growing up was for pretty sucky reasons so I avoid them like the plague. We also avoid putting anything in our bodies that isn’t natural. We rarely get sick, and in the event that we do, we use essential oils which have worked much fast and more efficiently than drugs. But we also know there is a time and place for medicine. So for me to ASK my mom to take me to urgent care was a BIG FREAKING DEAL. She walked me to the car where I stumbled the whole way there, everything outside was white. I couldn’t see anything. I don’t remember any of the car ride. When we got to urgent care, she parked, came to my side of the car to help me out and I took one step out of the car and knew I wasn’t going to make it into the building. Everything was still white and there was no way I was walking. My mom grabbed my arm to walk inside and the confusion had set in. I said “What are you doing with my phone?”. She replied “Keary, I don’t have your phone, I’m holding your arm.” Then I said “Mom don’t touch my leg.” Again, she said “Keary, I’m holding your arm.” I was declining FAST. She put me back in the car and said “We’re going to the ER”. At that point I didn’t even care that we were going where normally I’d fight tooth and nail to not go. I don’t remember any of the drive to the ER and the next thing I know I was sitting in a wheelchair and a lady at the front desk was asking my name. Everything was still white. I couldn’t tell you what she looked like if my life depended on it. I couldn’t see anything. I felt like I was going to pass out. Actually, I just kept repeating how tired I felt and that I needed to lay down and take a nap. “Can you tell me your name?” she said. I think I somehow mumbled my name to her. She asked me “the questions” like “Can you tell me what the date is? Do you know what day of the week it is? (heck, I never know what day of the week it is even when I’m feeling good) Can you tell me what year it is? Do you know what city you are in?” I couldn’t answer any of the questions. Half of them I was just so out of it that I didn’t even know and some questions I knew the answers to in my head but my mouth couldn’t figure out how to verbalize the answer. It was the weirdest feeling. I remember I just kept telling her that the questions were too hard, all I could see is white, and I was really tired. If she would just let me lay down and take a nap, I’d feel so much better. And that’s the last thing I remember in the ER and the next thing I know, I woke up in the ICU. The freaking I-C-U! A nurse was in my room and I asked her where my mom was. She told me that she had gone home. I thought “Seriously mom, it’s only been a few hours. You couldn’t even stay with me? Like you really just dropped me off here and went home? #selfish!” I mumbled some words to my mom on the phone, she was yelling like she’d never been so excited to hear my voice. She asked if the nurses told me what happened and I said no. I was so confused. All I’m thinking is these parasites are freaking nuts! What have they done to my body to land me in the ICU. I remember asking her to bring me fizzy water and watermelon. She told me I wasn’t allowed to eat. I told her to bring the watermelon anyways. 20 min later her and my dad were in my hospital room. And they DIDN’T bring the watermelon. Talk about disappointment. I wasn’t even allowed to drink water. The nurse would put a straws worth of water on my tongue just till it got wet and then suctioned it up with one of those things like they have at the dentists office. What a tease! All I wanted was to chug a glass of water, even though I couldn’t move. I was so mad. But actually not THAT mad because I was so drugged up that I didn’t really care about anything…that’s a phrase we call DGAF (Don’t Give A F*ck). I was DGAF-ing like it was my job, folks. The girl who HATES needles had four IV’s in her arms and hooked up to more tubes than you could imagine didn’t give a care in the world. They were pricking my finger every hour, drawing blood from my arm every six hours, giving me injections more times than I could count, starting new IV’s, and none of it even phased me. I should have gotten an award for DGAF Queen on that ICU floor. Like at least give me a trophy or cookie or something.

Once my parents got there, I was like “Mom, where did you go? Like you just dropped me off and went home? It’s only been a few hours, you really couldn’t have stayed?” That’s when she explained to me that it was actually THE NEXT DAY. As in the day after we went to the emergency room. So what I thought had just been a little hour or two nap had actually been 24 hours. All I’m thinking to myself is how the hell did I just sleep for 24 hours? While I was still pretty out of it, my mom told me that I have TYPE 1 DIABETES and I went into a DIABETIC COMA. I had been in “KETOACIDOSIS” way too long which lead to a diabetic coma. (“KDA” – basically your blood and muscles start turning into acid as your body shuts down which then leads to a diabetic coma – The doctors told her to expect me to be out for three days and PRAISE THE LORD that I woke up early) I think I might have chuckled and said “But no, really…what happened?” I think I probably argued with her for a bit, I told her that I eat really healthy and take care of my body and they must be mistaken. Because I definitely don’t have diabetes. She confirmed that they were in fact correct. And then I probably said some words that you would never hear come out of my mouth. So it was news to me that TYPE 1 is GENETIC. It has nothing to do with what you eat, how much you exercise…if you have the gene…you’re gonna get it. And I got it. I got the freaking diabetes! Every time I say the word all I can think about is that one commercial where the guy pronounces it “dia-beet-us”. You know that commercial? Well, I have the beetus and it’s gonna stay with me till I die because there is NO CURE. Unless suddenly pancreas transplants become a thing. How is there a transplant for every other organ including the freaking HEART, but not the pancreas.

So here I’m thinking when I first woke up that “Man, these parasites are doing a number on me.” when actually my blood sugar was in the 500’s and I was totally dehydrated of all my electrolytes. By the time I got to the hospital I was 100 pounds and it turns out that I had no fluids left in my body and that’s how I lost 20 pounds in about two months. No matter how much I ate, I kept losing weight. I drank almost two gallons of water a day and still kept losing weight. What my body needed was for my levels to get back to normal and I left the hospital at my normal weight. Thank you Jesus! My body was starved of 20 pounds worth of fluids, how crazy is that? The doctors told my mom had we gotten to the ER even just an hour later, I wouldn’t be alive right now. And even once they got me into the ICU, they didn’t promise her that I would wake up, or make it through the night. When I was laying in my moms bed just hours before and said I felt like I was dying…I literally was dying. My body was shutting down and organs weren’t functioning. The scary thing is how fast I went from just feeling miserable to almost death. It is a COMPLETE MIRACLE that I’m not brain dead from a lack of oxygen or from arteries and veins constricting blood flow from my extremely high blood sugar. I do have a lot of ugly side effects from everything that happened, like my mind not being sharp, it takes me much longer to process things people say to me, it takes longer to form thoughts and verbalize them, and my short term memory is horrible. But I’m walking, talking and alive so we have much to be thankful for.

All I can think about is how thankful I am that I was at my parents house and my mom was home when everything happened. If I would have stayed at my house by myself, I definitely would not be here today. I would have taken a little nap and never woke up. What if I was still in Uganda? There’s no way they would have been able to treat me. Heck, I barely survived the ICU in America, there’s no way I would still be alive if this happened in a third world country. I was hooked up to TWO IV polls with what seemed like 30 bags of different meds. And for five days it was a balancing act to get my levels to a safe zone. As soon as they let me start eating, it threw everything off again because I’m so extremely sensitive to sugar and carbohydrates (which turn into sugar)

So here’s the gist of TYPE 1 diabetes. Your pancreas has these things called beta cells that produce insulin that help your body use sugar as energy. If your body doesn’t produce insulin, then your sugars skyrocket because they’re not being used. Diabetes is an autoimmune disease so I have bad cells in my body that are attacking my insulin producing beta cells. My body is fighting against itself. Did you know that carbohydrates turn into sugar? And your body needs insulin to use those sugars for energy. Did you also know that carbs are in EVERYTHING? Basically everything other than meat, fish, eggs, and cheese (you can imagine how quick those foods got old). So because my body doesn’t produce enough insulin, I am extremely sensitive to any carbs I put into my body. And now I have to inject myself with insulin 4 times a day. FOR THE REST OF MY LIFE. I have become insulin dependent. And there is NO CURE for type 1 diabetes. Now I have to count every single carb that goes into my body an I’m only allotted so many carbs per meal and it seems like an unrealistic thing to do since everything has high carbs. I can no longer just stop wherever I want to eat, or dish however much quinoa I want onto my plate, or snack on watermelon if I want. So many restaurants I loved just went out the window. I now have to check my blood sugar with each meal and at bedtime and give myself insulin at each meal and before bed. So there’s no more just skipping meals, or splurging on breakfast, or snacking in between meals. So then it gets more complicated. The vegetarian diet (plus fish) is the best for diabetics since meat is hard on our kidneys, which leads to protein spillage (google it), which leads to kidney failure, which leads to needing kidney dialysis. Except almost all veggies have carbs and are a lot higher than you think, making my diet even more complicated. It feels like a lose-lose situation.

It has been a struggle to find foods that will fill me up. I never seem to be full after a meal and I’m only allowed 15grams of carbs for a snack in between meals. So for example, that’s either 1 Kind Bar, or 1/4 raw almonds, or 1 avocado, or 1 orange, or 10 crackers, or 5 baby carrots with 2T of almond butter. I get to choose ONE of those options and it has to hold me over till my next meal. Yeah…none of those options are substantial enough to keep me full. Let’s take breakfast for example, I’m allowed 60grams of carbs per meal, except I’m trying to keep it at a max of 40 because anything more than that and my blood sugar sky rockets. So I can have 1/4 cup of oatmeal with 1 tsp of brown sugar, 1/8 cup slivered almonds, and scrambled egg whites with mushroom, peas, and avocado. It’s pretty filling, but if I want to have a glass of orange juice with my breakfast, I have to give up almost my entire breakfast food just to drink the juice. But don’t forget, I only get 5 baby carrots for a snack to try and fill me up till lunch. You guys, I have become THAT girl, and not by choice. The one that reads every label in the grocery store before it ever touches my grocery cart and the one that asks for the nutritional information at every restaurant, which most places don’t have. So then before I can order everything, I sit on my phone and have to look up the carb count for anything on the menu that might be of interest to me. I have shed some tears in the grocery store standing there with an empty cart because I can’t find anything that doesn’t have low carbs in it. My juicing days are over which kills me! I have been so frustrated the last two weeks. And for someone who LOVES to bake and cook and love people through food, it’s been hard because I feel so limited. I know that as time goes on, I’m sure I’ll find some staple meals that are low carb and delicious, but right now it’s just hard. Life has changed so much and it’s been information overload since leaving the hospital. Information that is vital to keeping me alive. My brain hurts.

I’ll be honest. I don’t think I’ve ever been so angry as I was when I woke up in that hospital bed. I remember waking up in the ICU thinking “Are you kidding me, God?” After all we’ve been through the last 4 months with Oliver, being sick in Uganda, not knowing what’s going on with Oliver health wise, me being home alone sick for a month, and then to end up in the ICU while my husband is on the other side of the world and they tell me I have diabetes, I don’t think I could have been more frustrated with God. It’s not just a short little hospital visit and then we’re done with it, it’s here TO STAY! And it changes the rest of our lives. I just kept asking Him to take it away. It would be so easy for him. He gently and lovingly said “no”. Now all I think about is “Did I put all my supplies in my purse? What if my purse gets stolen and I don’t have anymore insulin? What if I’m alone and my sugar drops or spikes and something happens? Will someone find me? What if I can’t get my blood sugar under control? Oh look at all the other diseases I can get just because I have diabetes! Watch out for bad circulation, you might get your leg amputated! Don’t let your levels rise and drop too much or you’ll permanently damage your arteries which effects all your organs. How the heck am I am supposed to travel on a plane with needles? No one is ever going to want to invite us over for dinner because Keary has the diabetes and that’s just too complicated. If I ever decide to have bio babies, they’ll probably get it. Can you have babies if you have diabetes? Why do I wake up in the middle of the night drenched in sweat. I’ve never been one to sweat. Why can’t I see anything? Oh that’s because the diabetes ruined my vision and now I have and old person prescription with what seems like 8 inch thick lenses. How many carbs are in that donut? 50 you said? Great, I’ll just sacrifice my whole breakfast to have the donut. Dang it, now I’m still hungry but lunch is 5  hours away. I need some kombucha. Wait no, that has carbs. How are we going to afford to pay for this expensive medication for the rest of my life? How are we going to afford a new insurance policy that will cover even just a portion of my medical care, ongoing tests, specialist visits, scans, etc. Great, now I feel guilty that I brought a huge financial burden to our family, as if not working the last four months and living in Uganda wasn’t hard enough. My yearly medical bills are now going to be the cost of a brand new car. Don’t forget the school loans, Keary, you’re a slave to money. I can’t wait to start hiking when I feel better. Wait, what if my sugars drop and I pass out and no one finds me? What if I’m working out in the gym and I pass out and people just think I didn’t eat breakfast or was dehydrated and don’t know to give me insulin? I just read online about a girl who had diabetes and died in her sleep because her sugar levels dropped and she didn’t know because she was sleeping. Oh my gosh I’m going to die. I need to stop reading things online.” No joke, all that goes through my mind in about a 2 minute period every day. Every. Single. Day. I don’t have the option of skipping my insulin if I want, or I’ll just take it later. My schedule is now defined by the medicine I have to take in order to live another day. Any everyone at the hospital just kept saying, “It’s a manageable disease.” Okay, yeah, it’s manageable…but it’s also ugly, hard, and exhausting. From the time I wake up till the time I go to bed, all that I think about is diabetes, when did I eat last, what are my numbers, why am I dizzy, I need to find an endocrinologist because my new (horrible) doctor refused to refer me to one, yet he wouldn’t answer any of my questions.

While my outside appearance may look fine, internally I’m struggling. It’s a constant battle to keep my blood sugar in a somewhat normal range. Even when I do “everything the book says”, it still does what it wants and then I end up dizzy and shaking because my levels have dropped way too low. That’s when I want to yell “Calm the F down, diabetes”. I spend most of my day looking up foods I can eat, preparing meals (since we can’t just easily go out to eat), trying to figure out what all my side effects are from, dealing with a doctor who has screwed up my prescription like four times in a five day period. And before I know it, it’s bed time. And all I’ve done is talk about diabetes, research diabetes, and feel the gnarly side effects of diabetes. Everyone says “You look great!” and assumes things are all fine and dandy, but its hard because there just aren’t words to explain the battle that’s going on inside my body.

I think the ABSOLUTE WORST PART about this whole thing is traveling. Or the lack of traveling, actually. The doctor told me I’m not allowed to travel internationally for the next year until we get my disease under control and my blood sugar isn’t all over the place. Because in the event that something happened to me on a 16 hour flight back to Uganda, or being in a third world country where doctors wouldn’t know how to treat someone who is KDA, could be fatal to me. I get sick to my stomach thinking about the fact that I won’t see Oliver till he lands in the states when Justin brings him home, which is who knows how far away. It’s been almost two months that I’ve been away from him and my heart hurts in ways I didn’t know possible. He’s growing so fast and I’m missing out on watching it. Love makes you feel deeper. Deeper sorrow and deeper joy. And everyday I ask God how he is going to use diabetes for good.

That first day I was awake in the ICU, I felt like God was taking everything away from me (Justin, Oliver, my health, my vision, independence, ability to work or drive a car, money, etc) . He was stripping me of all the earthly things and leaving me with just him. He asked me if I could still find joy, laying in that hospital bed, even when I feel like I had nothing left. And all I longed for “easy”. But guess what? “Easy” doesn’t get the kingdom anywhere. And “easy” keeps you from experiencing incredible intimacy with The Lord and total dependence on him. “Easy” doesn’t make us more like Christ. When I realized that God chose not to give us the “easy” that I so desperately wanted, I saw that he was using every one of our trials for his glory and for his kingdom. And it isn’t always right away, and something I still haven’t seen how he’s used, but I know that he will in his time. Nothing is wasted. God uses every bit of your mess and every little thing that man intends for evil.

One thing that several people have reminded me over the last three weeks is to give myself more grace. I’m a go go go kind of person and feel this expectation that I should be back to working, AND working at the same pace as I did before we went to Uganda and all this started. The truth is that so much of my body was affected from the diabetic coma and the diabetes for that matter. My memory isn’t what it used to be, I repeat things often, I forget things often, I move slower, and my mind isn’t as sharp. I have felt an expectation to look like a “good Christian” in the midst of all my sufferings. And that I would still be so joyful even when sh*t hits the fan. And that I could just praise Jesus all day  long. The truth is, I was pissed at God for a while wondering how diabetes is supposed to further his kingdom and why he allowed that to happen IN THE MIDST of Oliver’s adoption. I’m mad that I can’t go back to Uganda and see my son! How is that glorifying God? Haven’t we been through enough? Isn’t our voice for the orphan and adoption enough? Our heart behind sharing on social media is that we would be authentic and transparent even if that means we’re walking through a REALLY HARD season and things don’t look perfect. But we still share honestly and how our hearts are feeling. And to be honest, some days feel good, and some days feel like the pits. Sharing is powerful and you will never know how far your story reaches. I had realized that all my questions to God were regarding my comfort and desires leaving no room for his perfect plan or how he intends to use me. I was feeling that if I had to suffer or something bad happens, I expected to see God turn it into something beautiful. And fast. I keep having to remind myself that some things I just may never see the good in it on this side of heaven. And my heart is learning to be okay with that.

I decided that I could either be depressed about the beetus for life, or I can choose to raise awareness, advocate for others, and being a living testament that this disease doesn’t define you, no matter how many times a day I feel like it rules my body. I hope that I can talk openly about Type One and that it would encourage others to show more grace to people with the disease, or with any disease for that matter. And since I’m so new to all this and have a trillion questions, and I’m sure there are others in the same boat as me, I started a NEW INSTAGRAM ACCOUNT dedicated to all things beetus! I’m hoping it can be a place where others can find answers, I can find answers, I’ll post low carb and healthy recipes that don’t taste like cardboard, a place where T1D’s can meet each other and make new friends, encourage each other, and I really wanted a way to stay accountable to eating healthy, exercising regularly, and being a good steward of the body The Lord gave me.

And as far as Justin going back to Uganda, he’s leaving in a few weeks. I’d be lying if I said that I wasn’t terrified of being by myself at home with being so newly diagnosed, but we also want Oliver to have at least one of us with him asap, and since I can’t go, Justin’s going back on his own. I haven’t been able to start working again and it’s going to take some time before I can get back to things. Justin just started back up a little this week since he’s been so busy helping me since I got home from the hospital. The hard part is that I can’t work enough on my own to keep up with bills, our Uganda house rent, utilities, medical stuff, and just everything else while Justin is gone. We are trusting that God will continue to provide every penny till we bring sweet Oliver home. We never expected for things to take this long, to have to keep paying living expenses and rent in Uganda, for unexpected flights for me to come home, for Justin to come home when I ended up in the hospital, for him to fly back, for having to switch insurance companies, having to pay for all sorts of medical supplies to have on stock so I never run out, and so many other things all while not working for the last four months because we haven’t been home or I’ve been sick. I let money stress me out when I KNOW that God is so much bigger than money. And when he calls you to something, he’s going to provide for it!

I have been getting so many emails, messages, and comments of people asking where they can donate. And I have had such a hard time responding because it’s hard for me to accept gifts. The truth is that our journey isn’t over, Oliver isn’t home yet, and people keep telling me that it is a joy to for others to give. So because so many people have asked me to re-post our YouCaring link, I decided I would, and it’s humbling to accept gifts when I feel so undeserving.

{DONATE HERE}

We just want to say “THANK YOU” times a million for the love and support we have gotten! I can’t say it enough! We read through your comments and messages and find some much encouragement, especially on really hard days! We love reading the verses that you share with us. And we are so thankful for the ways you have financially supported us to bring Oliver home! You are all such a sweet part of his story and we really hope that we get to meet a lot more of you! I never in a million years would have thought that Ollie’s story would reach so many people and it’s been so amazing to see how God is using one of his children to advance the kingdom. It gives us strength to press in deeper!

Much love and thanks,
Keary

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