A few months ago, I was "officially" diagnosed with Grave's Disease. I have suffered from it for many years, but wasn't able to get a diagnosis until I started having problems with my eyes. For many years, I've had many issues and have been tested for hyperthyroidism numerous times from the time I hit puberty. It was recently discovered I suffered my 2 miscarriages due to untreated graves. My doctor is amazed my daughter is alive and well. I'm not even sure how many blood tests I've had done. My mother has Grave's as well so we've always "known" I've had it, I just never had a confirmation. I've had many many symptoms through the years and was repeatedly tested for everything from my thyroid to lupus. I was told it was depression. I was told my rash was psoriasis. I've been given more than one wrong diagnosis.
October of last year, I noticed that I was having severe anxiety issues. I would be laying down to sleep and suddenly hear my daughter's crib creak. It creaks when she moves or when someone moves her. I would lay there convinced that someone was stealing my daughter. Somehow, someone unlocked the deadbolt, opened the door, walked down the hall, and was taking my daughter. All without my dogs or myself hearing them (which isn't going to happen). My favorite (sarcasm) was when I was convinced that someone was going to break the deadbolt. I would run into my daughter's room to protect her. There, they would make me watch as they shot her. Then, they let me live. These weren't delusions, but scenarios my mind would make up and worry about. I lay there every night telling myself it wouldn't happen. It was in my head. No one was going to break in. As I would try to convince myself that she was fine, a little part of my brain would chime in letting me know that IF she were kidnapped and I didn't go check on her, I wouldn't know it until the next morning. Then, we would have almost no chance of finding her. So, every night, I was getting out of bed every 10-15 minutes to make sure my daughter wasn't taken by a kidnapper my mind made up. I spent more than one night sleeping on her floor.
Next, the insomnia set in. I laid in bed for hours. I would wake up exhausted, drag through the day exhausted, lay down in bed exhausted, and sleep would elude me for hours. I could only manage 4-5 hours a night. Soon after, I noticed my eye. I looked in the mirror one day and noticed that one of my eyes was larger than the other. I freaked. I called my mom and my husband trying to figure out what to do. Did I have a brain tumor? Is that what the anxiety was? Was I going crazy? My mother told me to look at Graves Disease and there it was. Within 3 weeks, I had more symptoms than I could count that all hit me at once. I couldn't do it anymore. So, I made an appointment with a doctor to get tested.
Two weeks later, I sat in an office where she told me "the anxiety is easy to handle. I want to run a ct for your eye. I'm not sure what is wrong." I practically begged her to test me for graves. After the CT, she told me that is most likely my issue. The optometrist she had me see the same day said it was grave's as well. Then, the blood tests confirmed it. I had Grave's. Honestly, I'd never been so happy to have a diagnosis. I had always known, deep down, that I had issues with my thyroid. Finally, I could start treatment.....at least I thought.
I have another blood test coming up in the next couple of weeks and I'm sure it will say the same thing. "Normal" thyroid hormone levels. The problem with this is they will not administer radioactive iodine or a surgery until my levels are high. Which means I still suffer when the paper says I'm "normal".
What is living with Grave's Disease like? First, its not the same for everyone. Mine is different from my mother's. Hers is different from anyone else I know. It is never the same. Second, it is different than hyperthyroidism (which usually has the sufferer back to a medication free life in 5 years according to my thyroidologist) and is different from hypothyroidism. Grave's is an auto-immune disease. Even when I get treatment, I will most likely always need to keep tweaking and re-tweaking my medication. I will always be poked and prodded for blood test and exams. I will never be done. Yes, I will live a better life after treatment, but my odds of being free are slim to none. So, one thing to know, Grave's disease will always be a part of my life. If you love me, you have to love it. The ugly beast isn't going anywhere anytime soon and can rear its ugly head at anytime.
Moving on to the real reason I'm writing this. I want someone, anyone that is healthy, to change their view of people living with chronic illness. Some people say they're lazy. Some people say they're using it as an excuse. Some say they're going to be fine. Some give medical advice. Really, all they need is support. Because living in a broken body is pure hell. They can't be fixed. They'll never be better. More problems will most likely arise. It isnt as simple as taking an organ out and they'll be better. Their body is waging a war against an enemy it knows all too well- itself. So, to give you a reason to change your mind or start caring, I will tell you what I live with.
A few days ago, I had an episode of "graves rage". I flew off the handle over something small. Sure, most people do this, but not to such an extreme. I became infuriated with my husband over a Facebook post. So infuriated that I went into the bathroom, blasted some music, and chopped off my hair. I wanted a divorce and a new look. I don't regret it because I did a good job (and we aren't getting a divorce). However, I did it out of rage. Pure hatred of the man I love. I adore him, but in that moment, I would have done anything to never see him again. For no reason other than a Facebook post.
Thursday night, I took my sedatives and drifted calmly to sleep. There was nothing remarkable about that night. Nothing that would tell me what I was in for the next day. Friday, I woke up running to the bathroom. My heart was racing, my body full of adrenaline, and I was on the bathroom floor puking. I felt like I'd just been in a terrible car accident or been shot at. My adrenaline was so high I was actually vomiting. My heart rate was over 150 and signified I had just finished a great work out. None of this happened. All I did was wake up. I was shaking. I couldn't stop the trembling in my hands, my arms, my entire body. Once my body stopped pushing everything up, it decided I needed to run a marathon. Well, I can't do that, but I felt like I needed to. I felt like I'd mixed redbull, monster, and coffee into a huge 64 ounce mug and downed it all in 10 minutes. If I stopped moving, my body would quickly flood with adrenaline and I'd be in the bathroom throwing up- and it was only 10 a.m. I felt like to stop moving would mean to stop breathing. I was still shaking. Violently so. What was happening to me? I was so wrapped up in trying to find things to do, that I didn't know I'd forgotten to eat (which happens rather often), take my medication, or breathe. Suddenly, I'm starving. Recently, I've been able to put my husband to shame. I eat about 4 full meals a day (big meals) and snack constantly. I've eaten a weeks worth of groceries in less than 2 days. Alone. I'm so hungry. Why am I so hungry? I eat everything in sight. I can't stop. I feel like I haven't eaten in days, but I just ate half an hour ago. We need food. I need food. I need to eat. I'm starving. By 3 p.m. I crashed and I crashed hard. It isn't quite like a caffeine crash, but that's the best thing I can ascribe it to. I couldn't move. My body was done. I felt like I'd run a marathon that required me to take a test at the same time. I was exhausted physically and mentally. I had just crossed the finish line without knowing it and my body was collapsing beneath me. My brain had done so long before. Around 6 p.m. the adrenaline had come back. I was willing to do anything and everything. I felt like I'd taken speed. I jumped in the hot shower hoping it would relax me. Yet, I'm not safe anywhere from the constant reminders. It started slowly, but I knew instantly. The bath was filling with water. I checked to make sure the drain was open and it was. So, why was it filling? My hair. It falls out in handfuls. My brush is covered. I find it everywhere. It wraps itself in clothes, around my daughter, finds its way into food, creates piles when I sweep, covers my pillow every night, and clogs drains. The worst part is that my husband had cleaned the drain a week ago. Already, my hair has backed it up. As I stood there wondering why I am not yet bald. I felt an all too familiar sting. My knees. I had to get out of the water soon. It dries out my rash. A rash that is a lovely bright red and patchy. Oh, and itchy. Oh so itchy. I'd take sandpaper to my arms and legs every single day if I could. Nothing helps. My doctor told me it was nice that I have hope it will end one day. I took that to mean it would be around for years. How did I get in the shower? I can't remember. I don't remember turning the water on. Did my husband start it for me? No. He's watching our daughter. How did I get here? When? That night, I took my sedatives hoping for a small reprieve from my own body. I wanted to drift into a drugged sleep and forget that I'd lost control over my day.
Saturday, I woke up without pain. I'd hoped that was a good sign. I went into the bathroom and brushed my hair. Just like every other morning, it was falling out in handfuls. Tangled in my brush, falling to the floor, clinging to my clothes. I'm told its called glass hair. How accurate is that? I touch my hair and it breaks. I look at it and it drops off of my head. I look in the mirror and see a ghost looking back at me. I'm so tired. I notice that my eye is a little more swollen than usual. I notice that I look like a freak. One eye sticking out farther than the other. No way to hide it. A bundle of muscle in the back has become inflamed and there is no longer room for my eye in the socket. So, it is being pushed forward. I no longer have 20/20 vision in that eye. In fact, I can't legally drive because my eyesight is so poor in that eye. I see that I'm starting to gain weight. This is progress. After years of gaining and losing 40+ pounds in the matter of 6 months continuously, I am finally maintaining a healthy weight. I finally look healthy in that regard. Its nice to not hear remarks about needing to eat more or exercise more. I can finally fill out a pair of jeans without looking like my skeleton. I can put on a pair of jeans and not wonder how much more weight I will gain before the cycle ends. For once, I look human. I walked to the couch suddenly engulfed in pain. My knees feel like there are shards of glass in them. For some reason my hips are the same. I fall to the couch all too happy to not get up. The migraine was back. Right behind my eye a sharp and dull pain that radiates down my neck and into my shoulder. My eye is resisting being pushed forward. I'm glad its putting up a fight, but the pain is unbearable. That evening my husband came home from a day of fishing. He heated up his dinner and sat down to eat. Then, he did it. Ever so lightly, he scraped his fork across his teeth. I couldn't handle it. I asked him to stop. He said he would. Yet, I could still hear it. His fork grinding, his teeth chewing, him moving food in the bowl. He wasn't particularly loud, but it was getting on my nerves. I needed to get out. So, I sat outside when it was 9 degrees just to avoid the rage building in my body. I couldn't be in there while he ate. That night, I had a few drinks and couldn't take my sedatives. However, I drifted off to sleep within half an hour. Which is pretty remarkable.
Sunday, I woke up and laid there. Not because I didn't want to see my kid, but because I couldn't get up. The pain made it impossible to move. My knees. The glass was back. For an hour I sat there slowly trying to bend and straighten them a little farther each time. An entire hour of my day wasted just trying to get out of bed. I finally sit up and see the TV. Only, there are two of them. There is two of everything. They're blurry and out of focus, but there are two. The pressure on my eye is worse. Once I'd made it out of bed and to the bathroom to once again lose more hair, I collapsed on the couch. I was so tired. I am so tired. I can't focus. Did someone say something? Who put this show on? What show is it? Why am I on the couch? How did I get out here? Did I walk? How? When? I am so tired. I just need sleep. Once again, it is gone. Just outside of my grasp. Taunting me. Why? I try to play with my daughter, but it isn't working. My body doesn't have any energy. How many hours did I sleep? Why does it feel like I only slept for two? I can't move. Its too difficult. My brain can't focus long enough to complete a motion. Even if it could, my body doesn't have the strength to listen. Eventually, I have to get up and make lunch. I fly off the handle with my husband because he didn't pick up lunch for the day because I didn't put it on the grocery list. Its his fault. Right? Why didn't he know we needed lunch? I send a snarky text to let him know how mad I am. I put my daughter down for a nap and my sister asks me to help her sew. I can't move. I can't think. Please just leave me alone for a few more minutes. Maybe then I will feel better. Thankfully, my friend steps in and explains the next few steps to her. I finally find the energy to get up and finish the last few stitches on my current project. Then, I'm exhausted once again. I've run a marathon just walking across my living room. My body is leading a revolt. It needs rest. On the car ride to take my sister home, I struggle to keep my eyes open. I struggle to stay warm. Its so cold. How could the car be eighty degrees? Its so cold. I'm shivering. Not just my arms. My entire body is shivering and I can feel it in my chest. After arriving back home, I can hardly get out of the car. I just want to go to bed. Yet, I need a shower. In the shower, I have the same reminder as always. The rising water, the sting on my knees, and the water being so cold despite being cranked all the way to hot. I dry off and drag myself to the living room. My heart starts beating differently. I can feel the change. I no longer need to take my pulse to know it is quickly climbing. It is also skipping. Is this it? Is this when it happens? The heart failure my doctor is so concerned about due to years of no treatment. Will it happen now? I need to get the rhythm back to normal. I use a trick my mom taught me and it works. My pulse is still climbing, but I have a steady beat. This is good. Now, I sit here. 2 hours later. Wide awake. I took my sedatives and my body laughs. They have no effect tonight. My pulse is high, my hands are shaking, and adrenaline courses through me. I'm so cold. I sit here curled up in a long sleeve shirt, pants, sweatshirt, 2 blankets, and the heat on 70. I'm still so cold. The house is freezing. Everything is cold. My husband is sound asleep next to me and part of me envies him. I wish I could do that. Just for a few weeks. Sleep on my own. Real sleep. How amazing would that be?
This is only the last 72 hours. However, this doesn't end when I am "over it". It won't last a few weeks. These 72 hours will occur, in part, for the rest of my life. The worst part is, these were what I would consider good days. The entire time I'm enduring this, I have a little toddler running around getting into everything. I have to keep up with her. I have to clean up after her. I have to do everything a normal parent does while my body fights with itself. So, be a little nicer to that mom that looks like a wreck. Her body may be attacking her.
Tomorrow is a new day and I have no idea what I will be faced with. Will I wake up puking? Will my joints be full of broken glass? Will my heart be racing? Will I be so tired I struggle to get through the day? Will I have enough energy to load the dishwasher? Will I have so much energy I start a project I will soon be too burned out to finish? I have the constant nagging that I don't know if I will be able to move tomorrow. I can never make solid plans because I don't know what my body has in store for the next few hours. Let alone the next few days. I never know if I will need my husband to come home from work just to take care of our daughter while I'm on the bathroom floor. I never know if my next blood test will give me the answers I need. I never know when I will stop taking medication (although it doesn't seem to be anytime soon as my current heart medication has enough refills for a year). I never know if my daughter is suffering because I'm suffering. Does she notice that I can't move? Does she notice that I'm sick? Am I just lazy to her? Am I a bad mother for not playing with her every day? What does the next year hold? What happens if my thyroid storms when we are home alone? Will I notice it before its too late? Will I be able to keep her calm while I am freaking out? Will she be okay with paramedics in the house? Will she be okay with one of them touching her to put her in the ambulance? Who will watch her while I am in the hospital? Every single day I am faced with a million possibilities of how I will feel. I can't wake up and decide it's going to be a good day. I can't tell myself "its only the flu. It will be gone in a few days" because it won't. I have to live knowing that every day is up to a body I have no control over. A broken one that I can't fix and no longer know. I can't wake up and have a cup of coffee to perk me up. Hell, I can't even have seafood for dinner anymore. So, the next time you see someone that is chronically ill, stop to think that maybe every single day is a battle for them. Every day is a new day of new symptoms that will ruin them. Every day is a huge unknown and they're just waiting for the pain to end. They're waiting for the guessing to end. They want to fall asleep at night, knowing what their body will be like in the morning.
