For 23 years (my whole life), I have never been completely off any prescription medications. There is huge debate surrounding medicine and the pros and cons of medicine therapy; but for someone who never was able to make that decision, the fallout is hard. I have been reading side effect labels since I can remember for physical effects, but now the psychological effects. I have said this and will continue to say it, I feel as if I am waking up from a coma after 3-years of massive amounts of medications to treat my diseases, reversing side effects from other medications, and countering the ill effects of other drugs.
During the most recent period, I felt like I was either crazy, dazed, slow, confused, amnesiac-like, irrational or a combination of all of the above. I would think I am acting completely crazy in my rational mind and still have no ability to control my emotions. The smallest thing would set me off and it didn’t matter who it was. Jake and I weren’t even together for a month when they put me on Vancomycin again. It wasn’t fair to him but we talked and talked about it and he just said I feel like I bug you more now. It’s hard for any relationship, especially a new one, to work, but add medications that absolutely change your whole personality makes it a hundred times more difficult. He gets it, but its not fair to anyone. Luckily, I have tools that help me think sane even its only momentary. That is my mind and gut telling me that this isn’t me and that I need to keep fighting. It was hard though, my medicine induced depression and anxiety, it made me contemplate death everyday and sometimes all day long, but add PTSD on that and it is almost unbearable.
My dad is my security blanket and I know that sounds weird but he and I just get it. I never have to say a word and he just knows I’m fighting inside and I am about to break. He and I fight, but my rational side has never been mad at him. He knows that he is the only person that can calm me down and really feel how I feel. He always tells me how proud he is of me or that I’m his hero, but in reality, he is my hero. I can’t tell you how many times I’ve had a complete break down and extreme anxiety and I see him and I am okay. Both my parents are my advocates, but my mom has a different outlook and way of dealing with my health. She is a sibling of two CHD warriors, my Uncle Colby and Uncle Randy and relates with my sisters. But my dad and I are going through this together for the first time. He has the most compassion of anyone I have ever met. He tells me all the time how unfair it is and that he doesn’t know how I can still be funny because this sucks! but I realize that when I’m making humor about my situation that is the real me shining though. The mental torture is the worst. Its scary thinking and feeling like you will never be yourself again and its a dark place to be in. I get embarrassed because I don’t remember many things that have happened and my only response is, “was I on drugs?” The answer is yes, followed by a sad face. I think in some respect I’m lucky I don’t remember everything because it would be too painful to contemplate.
No matter what medicine you take, you will be impacted. Just because it doesn’t have a certain warning, doesn’t mean it won’t have effects other than its curative purpose. When you mix 9 plus medications, drug interactions are unavoidable. I’ve had my entire personality turn into someone I didn’t recognize and that wasn’t just for a couple weeks or months, its been for several years now. I can now say I am feeling and acting like the real me for the very first time in years. Getting off medications is hard and that is because my body has been on them for years. Although I do not have a drug addiction and I want more than anything to get off many, I do not have a choice. The world doesn’t have a magic pill for me or any patient with serious congenital anomalies. All our surgeries and all our medications are considered palliative, not curative. (i.e. to improve quality of life, reduce negative impacts, and maximize physiologic function with what we have). Most people think because I’m on an X amounts of medication that I’m okay and will be okay and that’s just not the reality. Most days, I can barely brush my teeth when I wake up because I feel like I got hit by a truck or have a migraine, or some exotic combo.
If you knew me 5-6 years ago, you know I was a happy optimistic person who was able to at least try to keep up with others. Now fast-forward to today and you haven’t seen that person, I haven’t recognized me in years and years. I didn’t even realize that I had a complete personality change until recently. I still have low energy and my baseline isn’t even half of what it used to be, but my mood is restoring and it’s a very sad reality. I call it medication-induced depression and it’s a real thing. Some days I would just lay in bed hating my life, wanting it to end, I felt like life wasn’t worth it. I’ve asked myself. “Is it worth all this suffering to just survive?” Luckily, my thought processes at these times opposed by my “real” personality. The real me would kind of shine through during these darkest times and I would know that if I just kept holding on and fighting to just survive, that it will be worth it.
Yes, this surviving and fighting thing was and is the
hardest thing I have ever done. It’s true, mind over matter, but how do you do that when its been 5 years of hell and your life is completely out of your control? Not having any control over your health is the worst feeling. I didn’t even have the luxury to do the things over many years that damage your own body; I was born already damaged, the reality is that it sucks for everyone involved. You, your family and your friends. This is truly a road that is unpaved. We need to recognize that the mental state has a direct relationship to what you’re going through and have gone through. How can anyone be okay after the hell that I was put through? The answer is you have to continually change your reality, reinvent yourself and create new dreams and futures. I’ve given up the Olympics, traveling to the moon and climbing Mount Everest.
My amazing adult congenital heart disease cardiologist saw me this week. I was happy and energetic about what’s been going on and what I feel and want and I was telling her that I’m looking into plastic surgery. It is my hope to fix at least some of the terrible damage to my body caused by Cushing’s disease from steroid toxicity. She did not know me prior to that mistake, so she’s never seen my upbeat, happy, clear minded, optimistic…. personality and I know that she was probably thinking that this was an extreme emotion and wasn’t real. She shot me down and said that she wants to see me more medically stable and work towards my future before she will consider giving me the green light for any procedure. She also stated that I need to accept that this is my body and be happy because I am beautiful and not discount what I’ve gone through.
The funny thing is that I do feel beautiful and I haven’t discounted this whole ordeal, but quite the opposite, I have been working every single day to fight the emotional carnage from the last years. I have PTSD and I know the reality is that even if I get any plastic surgery, its not going to cure even a small part of the lasting side effects that I will carry around the rest of my life. I’m not naïve, I am terrified that in a second, my entire life will be turned upside down again because of my health. That isn’t me worrying too much or having an episode of anxiety, it’s my reality that medication has both saved me and failed me in spectacular ways. My physician’s often admit they are not certain what negative impacts some medications will have but I need the beneficial effects or else. Else is not a good choice. Unfortunately, this is my everyday life. A recent text reads like this “. . . with the combo of all the effects, we are in uncharted territory . . . I guess that sounds like the physician version of a road unpaved.
I don’t get to choose the times that are convenient for me to deal with all of this, it is a never ending battle for me and my family. I know that with every crisis, new complications will arise and I will have to work non-stop fighting them and hoping the cure is less onerous the disease.