Four years ago I woke up in a hospital bed, confused, tired, and finally, hopefully, on the road to being happy and healthy again. I had just undergone a major surgery, one that I had been told over and over again for almost two years was necessary, but one that would make me dependent on a Thyroid hormone pill for the rest of my life. I was twenty years old. Looking back, there are things I wish I had done differently or had known, but hindsight is always 20/20 and no matter how it happened I am healthy today, that’s all that really matters. But four years has allowed for some time to think and I wanted to share not only my story, but what I wish I had known, what I wish I had done differently, for anyone who may be experiencing something similar or might know someone who is...
Rewind to 2012, I was 18, a professional skier, fresh out of high school and I planned on competing and traveling while figuring out my place in the world. I also didn’t feel right, something was off, and my body didn’t feel like it belonged to me. I was constantly shaking, my heart was racing, it was hard to breathe, and for some reason, no matter how hard I tried I couldn’t lose weight. My mom took me to the doctor, they ran blood tests, an EKG (to see if my heart had sustained any damage) and hormone tests. Turns out I have Graves Disease, a form of hyperthyroidism, causing my heart to race, my blood pressure to spike, and my whole body to shake, all while the weight just kept piling on. I was not myself; anyone who has had thyroid problems will tell you that your emotions, behavior, sleep, anxiety, heart rate, weight, eyes, and hair are affected. I was in constant pain since my body was destroying it’s own muscles faster than it could create it. I was always exhausted but unable to sleep comfortably or rest enough. On the outside, you would never have known anything was wrong, unless you noticed my tremors or weight gain. There wasn’t a sign I could wear around my neck that said, “be gentle, my body is fighting itself and it’s exhausting” to help others understand.
Initially I was given three options, treatment with anti-thyroid hormones, radiation treatment, or a thyroidectomy. My first doctor put me on anti-thyroid hormone pills and beta-blockers (to control my heart rate and blood pressure) but insisted one of the more drastic and permanent options (radiation or surgery) was necessary as soon as possible. I was not interested in removing or killing off a vital organ before giving it a chance to become healthy again. I chose to get a second opinion; my second Doctor was more understanding and willing to try medication before drastically altering my way of life. We began attempting to manage my symptoms with medication.
For almost 2 years I tried medication to manage and control my symptoms. While the medication helped keep my symptoms in check they weren’t bringing me back to where I once was. I got frustrated and tired of constantly going to the pharmacy for more medication that I would take 2-4 times a day. I didn’t’ feel well, or like myself and I was tired of people telling me what to do. Especially since it seemed like nothing they told me to do was helping.
I stopped taking my medication. It was the dumbest thing I could have ever done.
I do believe I was getting to a manageable point with my meds, but instead of maintaining my meds and letting my body get there itself I just stopped, I stopped helping myself get better.
My doctor and my mom found out, they were upset and insisted I get back on medication. When I got back on my medication I had an allergic reaction. This can happen when the body is not weaned off of the hormones and then put back on them abruptly. Unfortunately once my body reacted negatively, medication was no longer an option, and according to my doctor my symptoms were not in check enough to go untreated. So I had two options, surgery or radiation.
We scheduled my surgery.
I believed my body was headed into remission, I asked for another blood test, I pushed for more examination of my numbers, but I was also so exhausted. At this point I was 20 years old and I was tired, tired of being sick, tired from being sick, and tired of going to the doctor every 2 weeks. On the day of my surgery I fought with my doctor, asking for one more blood test, one more chance to let me body heal itself. He told me he was tired of my childish behavior and he didn’t see what another blood test would do. He was rude and uncaring, telling me surgery was my only option or he was over treating me. Even though this was going to affect ME for the rest of MY life. Ultimately he was right in the end, my body most likely would not have entered remission for long and surgery put me on a manageable plan. I wasn’t the easiest patient to interact with during this time, but I believe the situation could and should have been handled better.
I remember being hysterical in the doctors office and deciding I couldn’t live like this anymore, feeling like I was completely insane all the time, deciding that with surgery at least I would have a path to walk down, a solution to follow for life. My surgeon was one the best in the game, and I knew if I wanted the surgery done right without complications this was my chance.
Before I went into surgery I made it completely clear I never wanted to see my Endocrinologist again.
Since then I have found an Endocrinologist I trust more than anything. One that understands me and my desire to treat myself as naturally as possible despite not having a vital organ operating within my body. She also encourages and is interested in my use of cannabis as a wellness tool and medication. I feel better now at 24 than I have since I was 18 and for that I am very grateful. I’m grateful to have made it this far and to be able to help others along the way. If I could go back in time, ultimately, I wouldn’t change anything other than staying on my meds, but I would insist on MY voice being heard, on it being done MY way and in a way that felt right to me. After all it is MY life that is affected by this sickness and surgery, forever.
Looking back there are a couple things I wish I had known and that I will keep in mind in the future:
1. Ask ALL of the questions you have. Doctors are busy but it is also their job to take care of you, you are never asking the wrong questions when it comes to your health.
2. Insist on the treatment that feels right to you. If you want more tests, get them, if you want a second opinion by all means GET IT!
3. Get a second, third, and possibly fourth opinion. What I thought was nerves was my gut telling me to find someone else, eventually I did, I just wish I had found her sooner.
4. Take all of your medications, as prescribed. If you think a treatment plan you are on is wrong, ask questions. Make sure you and your doctor feel it is the right treatment for you, don’t just do what you think will be easiest or least scary at the time.
5. Consult with your doctor before stopping any medication.
6. Maintain a healthy lifestyle as mush as possible. Eat good food, drink water, go on walks (even short ones), read books, and let yourself rest when you need to.
7. Above all take care of yourself, don’t do things or push yourself past where you are comfortable, there is no need to make yourself sicker for no reason.
8. Heal at your own rate, your own pace, health is a constant journey and rushing through the healing process will only harm you in the end. Take your time, you have plenty of it, might as well be as healthy as you can be. In the end there is only you and the vessel you have been given, take the best possible care of yourself!
9. And last but not least, SPEAK UP! I have to work on this myself, but when someone is wrongs you or doesn’t value you or your opinion let them know how you feel. Put yourself out there and let others know how you feel and why, it doesn’t matter if they don’t understand, you will feel better and be understood better by speaking your truth. The only thing that can come from more communication is better understanding of the situation as a whole.
In the end I am extremely grateful to be healthy and happy. This journey is a never-ending one but I finally feel like I am the one sitting in the driver’s seat. Don’t be afraid to let others know what you need, what will help you be the best version of yourself you can be. Don’t be afraid to speak up when someone wrongs you. Don’t be afraid to ask questions. Don’t be afraid of following your gut and doing what you know in your heart is best for you. And last but not least don’t be afraid to let others know when you appreciate them, or something they did to help you on your journey. You are not in this alone.
If anyone ever needs someone to talk to or vent to, I am here. Also if you are looking at/seeing Endocrinologists in the Denver/Colorado area and you would like feedback on Doctors I am more than happy to share my story in more detail, just let me know!
Thanks for reading this long, not-so-weedy, post; it took me a long time to figure out how to say what I wanted but it finally feels right…
Stay Stoked, Stay Stoned!