You may have noticed that this blog hasn’t been doing its normal thing lately or following a schedule.
The past week and a half have been really, really tough on me, both from a mental and physical perspective. I wonder why it is that the best times in your life are weeks that seem like a day, but the worst times are days that seem like months?
The beta-blocker withdrawals have not been going well. The doctor wanted me to cut back my medication from 25mg to 12.5 mg. Since it’s one of those drugs from which you’re supposed to step down gradually, I spent a week in bed while I slowly reduced the amount I took every day. Somewhere in the middle, I felt a little better, and got close to the 12.5 mark. Then, I hosted an event I had on the schedule for a number of weeks (before knowing I was going to need to deal with this.) My pulse was up over 100, my BP jumped a full 20 points, I couldn’t stop sweating, and started to see stars. I started to think again about how there is something wrong with my body, something that no doctor has discovered, but this beta-blocker seems to treat. Without it, my heart palpitations and irregular heartbeat have returned, and a feeling of adrenaline that seems to rise up throughout my body whenever I’m in the car makes it tough to go anywhere. My migraines have returned. And, for the first time in well over a year, I had a full-on panic attack, the kind where I feel as if I’m not in control of body or mind, and I’m certain I’m going to die, and nobody can help me.
If there’s something that’s a cross between having the flu, a heart attack, and menopause at the same time, that’s what I’ve been feeling. It’s tough to remember that 10 days ago I was practically skipping to the doctor’s office, saying “I feel great!”.
It makes me a little sad to realise I am not cured, I’ve just been on a drug that masks the symptoms of whatever is wrong with me. And whatever is wrong with me isn’t just sheer anxiety; I feel it in my body, and see it in how my body reacts. I experience the same symptoms that sent me to the ER to start with, and it makes me feel as if I went through two years of hell and gained 30 pounds for no reason. I can’t just stay on this medication forever. But I can’t get off of it until they figure out what causes my pulse to race, my inability to tolerate warm temperatures, and the feeling like bursts of adrenaline are exploding all over my body, and why I have an irregular heartbeat. I’ve had so many tests done that I have to conclude it’s something no one can see, and something that’s somehow regulated by a relatively low dose of a beta-blocker.
Drugs are not cures, though. This particular drug is used to treat almost anything that requires your system to slow down to get better. A slowed-down system means you sleep more. You gain weight. You retain water. You lack energy. This particular drug is notorious for being difficult to withdraw from, even if you’re healthy enough to do so, and doctors often don’t know what’s a withdrawal symptom and what’s a symptom of illness they put you on the drug for in the first place. If you don’t have insurance, as I don’t, nobody cares much one way or the other. The drug is linked to Type-2 diabetes and blood sugar instability. There are tons of message boards with people sharing their stories about the drug, and for the most part, everyone’s doctor says “Side effects should be minimal.”
I wanted off the pill because I was tired of not being able to lose weight. The doctor gave the OK to adjust because my blood pressure was actually very low. Problem is, I wasn’t put on the pill for high BP. I was put on it because my pulse races and my heart was having palpitations and skipping beats. But, all the symptoms that made it impossible for me to function like a normal human being disappeared when I took the full dose. When you’re sitting in the hallway, hiding from your friends at a bar, with your heart pounding out of your chest and feeling like you might die, I can tell you, the last thing you care about is “Nobody will ever find me attractive again because I’m so fat.” You’d be willing to weigh 300 pounds for the rest of your life if it meant you could be healthy and live like a young, energetic person. However, it’s a vicious cycle, because once your health improves, you feel horrible about weighing 300 pounds.
I don’t know what happened to me, but I’m terribly depressed about it. I don’t often talk about my family on here, because they aren’t much a part of my life, but my mother has had numerous strokes and heart attacks. She’s deteriorated to the point where she can’t leave the house or string together coherent sentences. The only things that make her happy seem to be talking about things she used to love and will probably never be able to do, which is so sad, because I feel that way about my own situation sometimes. The doctors say that my mother has the mental presence and body of an 85-year-old woman. People in my family are talking about legal papers and wills and preparations for “What if she doesn’t have another few years?”. My mother is 62 years old.
My father, whom I’d largely not rather see or know at all, is 63. He’s of perfectly sound mind, if that means being as abusive as ever to everyone around him is a sign you’re a rational adult. However, after two failed knee replacements and a diagnosis of lymphedema, he’s confined to a wheelchair. He’ll probably live another 20 years, although he doesn’t want to. At his largest, my father was about 530 pounds.
I was 30 when I mysteriously got ill, and accumulated $50,000 worth of debt and endless months of anxiety trying to figure out what’s wrong with me. I saw 13 doctors, most of them specialists. They took so much blood for tests they weren’t legally able to draw any more for another 6 months. The cardiologist, whom I think should have been interested in my case, dismissed me and said, basically, “You have anxiety and you’re wasting my time.”
I clearly have anxiety as a result of this situation. I clearly had damage to my inner ear. But none of that explains the other symptoms; the extremely rapid pulse rate, the inability to be around hot or cold temperatures, the adrenaline rushes, the panic attacks prompted by a physical feeling in my body of being totally out of control. I am certainly mentally unhinged by all of this. But what doctors don’t understand is that I was normal—until physically, I wasn’t. And when I scale back my drugs, it’s the physical, not the emotional, symptoms that render me unable to function.
There is, and has been, something wrong with me for a very long time. If I had money, I suspect I’d have been put in a hospital and gotten the best treatment possible. Because I don’t, I’m told I’m fine, given some pills, and sent on my way.
I often joke that I want my tombstone to read, “Nobody would listen.”. It’s not really a joke.
I don’t want to be a casualty of the system, someone who didn’t have to lose 5 years of life—or end up meeting an early death—because all the doctors were confused and scratching their heads. And when doctors don’t know, they tend to tell you that it’s simply anxiety or depression. It’s a safe bet, because 2/3rds of the country has some form of anxiety or depression, and it’s better than “We just don’t understand what’s going on with you.”. Meanwhile, it’s hard to explain your anxiety stems from an intuitive voice that something is physically wrong with you, and the doctors never looked in the right place or did the right tests. The idea that your mystery affliction may one day kill you, and has totally changed your life in the process, will cause *anyone* to have anxiety or depression.
I feel like someone who’s falling through the cracks, because I don’t have money or insurance or the resources that inspire doctors to care. I feel like a decent cardiologist should have set me up with a holter monitor and done a stress test, rather than doing an Echo and telling me my heart had no physical abnormalities. Even I know that irregular heartbeat and palpitations aren’t often caused by visible physical abnormalities. I feel like perhaps an endocrinologist should have been wondering if I have a hormone imbalance causing these things, because why does a previously healthy woman in her 30′s show symptoms that are frequently associated with menopause? I can figure these things out using logic and a basic understanding of human anatomy. If I can, why in the world don’t the doctors?
The thing with “rare problems” that “nobody has” is that at some point, someone somewhere has them. And if they’re told they’re just anxious or need to see a psychiatrist, well, that’s not a productive solution to a physical problem.
I am actually a very smart person. I may be highly-strung, but I’m also highly intuitive. And for so many years, I’ve felt like something is destroying my life and nobody will listen.
There’s nothing more frustrating than that, so if I went to see a psychiatrist, I’d probably point that out. I bet I wouldn’t get one step closer toward solving an actual problem, though.
People don’t listen. It takes too much time, too much energy, and being a doctor is largely about volume and high turnover and writing prescriptions for commonly used drugs. It isn’t about spending time with one person and actually figuring out why something in her body stopped working correctly. But, it should be….because I want to live to see 35, and even 40.
So often, people mistake being in tune with your body and scared by what it’s telling you with being a hypochrondriac. They are not the same thing. One day, someone is going to find out, and I hope it’s not too late for me by that point.
And I hope I’m not completely alone in the world when that happens.