The Knot in My Chest.

There comes a time when you have to try to let go of the hurt. You don't even necessarily want to. But you need to. You've held it all in for so long, it forms a lump in your chest. A hard knot of a lump, that tightens in times of anxiety, or anger, or sorrow. It tightens when you're reminded of the thing that caused it.

This has been me. This is me, it has been for years. The simple truth is that it's hard.  It's hard to keep your head up and keep pushing forward even when it feels like life is a game of jenga that just tries to carve out pieces of you until you fall. That is what it feels like to live with a chronic illness, sometimes. Little pieces of you keep getting taken, taken away, making your footing feel less and less steady, making you resemble even less of what you were... making you feel less in control. More and more pieces get taken away. The knot grows tighter. What will make it all come tumbling down? I think having lived a normal life before my diagnosis made me feel a little bit more bitter about it all. I prided myself on my independence, on my strength. I could make do without relying on anything, or so I thought. Coming to need a drug that is the 5th most expensive liquid in the world makes that self perceived notion come crashing down into tenuous precarity. Suddenly, you have nothing. No insurance. No medicine. No idea how to go forward. My life, since that moment, has sought to balance that sense of instability that has shooken my very core and changed my being. I gave up a part of myself and became someone new in order to learn to survive this illness. I combated one of my greatest fears, needles, and I learned how to do it on a multidaily basis. I learned the art of silent struggle - how to keep working when my body is screaming that it's low, and wait until I'm inconspicuous to eat some glucose tabs. Keep a smile on my face as a princess and wait until my back is turned to fix it. Don't ever make it seem like it keeps me from doing anything others can. Discipline myself in order to learn to keep a manageable diet as devoid of unnecessary sugar and carbohydrates as possible. Find a way to get insulin for years without insurance.

What a lump in my chest it has become. Just when I feel it's settled, when it's under control, it's at a lull - something seems to keep it rearing back.

"Lie down," Dr. Brown said, furrowing his brow. I rested my back onto the table, breathing in slow, deep breaths, staring at the flecks on the ceiling.

"Hmm. Better, but you're borderline," he said, removing the blood pressure cuff.

I felt the lump grow and tighten. "Borderline? But how?" I asked, almost incredulous. "My blood pressure has always been good."

Dr. Brown shrugged. "Has anyone ever talked to you about going on Lisinopril?"

I recognized the drug from several of my own patient's charts. I shook my head, immediately frowning, almost choking. "Lisino- no, you're kidding me."

"I'm going to start you on it. Just 2.5 mg."

I was silent. "But... but my patients are on Lisinopril. I'm 25. Old people are on Lisinopril. Not me. How can I need that?"

"Listen," he said. "It's not even really about the blood pressure. It's for your kidneys. I promise this isn't the Dr. Brown case study. This is evidence based research. Your likelihood of living another 50, 60 years without some kind of kidney disease is very unlikely. Research shows that starting you on an Ace inhibitor now can help reduce that likelihood. It's in the research."

I couldn't deny evidence based practice, the very thing I had had drilled into my own head for years and years in school. I still felt close to tears.

"I would have put you on it sooner, but we had bigger fish to fry. Like your A1C. Now that it's in a normal range, we can worry about the other stuff."

I frowned as he put in the prescription. I know it seems simple, but the reason it terrifies me is that I don't take anything about my health for granted anymore. I'm not a teenager anymore, and I always knew eating healthy and exercise was important - especially with an illness like mine - but managing your health feels more like coasting then. Even now, I felt that my coasting was starting to creep more and more into an uphill marathon. Which was annoying, because I'm a .... kinda fit 25 year old. I'm not super skinny, but I'm not anywhere close to overweight. I'm not super strong, but heck, I can still do a backbend if I stretch a little first. I don't eat unhealthy. I have an active job where I'm on my feet all day. The only thing I can really say, is that I am intensely stressed at work sometimes and don't always manage my anxiety as well as I should. I felt like I must have really screwed up in order to get here. And beyond that, I felt intense guilt. Is this what I had done to my body? Years of bad decisions, depression, and trying to manage with whatever insulin supplies I could piecemeal together. The year of rationing and dose skipping to lose weight. How sad I had been then, how anxious. How lost for help. So many times, I felt so alone in my struggle. No one knew what it had felt like to go through what I had. But what had I done to myself? Had I completely messed up everything? What if the damage was irreversible, in some ways?
I felt... fragile. Like that first week in the hospital. Things would never be as they were before that week. My attempts only made me live a lie to temporarily forget this fact. But the reality was that my life would be one of constant remembering of this fact. You are not normal. You are sick. You will always be sick. Even if I didn't feel sick... my body didn't work like it should. And keeping my health up the way a normal person would, would never be coasting. Not anymore. I know that might see silly - it's just diabetes, right? It could be worse. But that's how it feels.

I do not sit and dwell on my upset over my situation daily, but there are times when I feel a little overwhelmed by the struggle, or feel that what I'm doing is not enough. I am still the woman who prides herself on her independence. So many times in my life the ways have been few, but I have made them. When I had so little, I made what I could of it. When I didn't have a lot of money, I created a business. I built a client base. I booked gigs. I was 17. When I walked into a bank at 19 to start my first investment, the banker shook his head and grilled me for 10 minutes about my account. "This is a lot," he said. "Pardon me for asking, but what do you do?" I worked tirelessly so that I never had to worry about being able to care for myself. I worked 2 jobs and got into graduate school. My last semester of undergrad, I was in a horrific car accident. I broke up a long time relationship that turned abusive. I worked 4 jobs to make ends meet and save. I was accepted to graduate school. I uprooted my life and moved to Atlanta. I have always made a way. When I had no way to get insulin, I figured it out, exploring every avenue I could. And I feel that I can overcome most things... with an able body. But the concept of ever not having an able body terrifies me. That visit scared me for that very reason. Was that really my future? Was my future the one I helped work patients through every day? I loved my patients, but I didn't want that... I don't want that for myself. Defeated, I went to work from there. Defeated, I went home and started a regular workout regimen again. I didn't really know what else to do. Just keep up the same, but try a little harder. I've finally gotten my A1C under control. Dr. Brown actually praised me on it. He made me split my basal doses to twice a day instead of one. It's an extra injection, but it's actually made managing my sugar a lot easier. My consistent working out has allowed me to lose 15 pounds so far, and I cut my basal my almost 10 units a day (from a previous 40 units per day to 30) and my insulin to carb ratio from 1:5 to 1:10. (Basically, my insulin needs decreased). My blood pressure is 110/66. I feel good. I still worry about the future sometimes, but this year, I have good insurance. This year, I don't have to worry as much. I can focus on my health. It feels good. I am trying. It's never too late to take better care of myself.


The lump in my chest is still there. I have learned to grow in spite of. My struggle is not the hardest, and it's not the easiest. It's my own. Am I good enough to deal with it? I guess so. I hope so. I'm living through it daily and telling myself that's the case.