I had every intention of talking about the need to be assertive when dealing with doctors for this post. Please note, I did not say aggressive, simply assertive. It doesn’t do you any good to yell at them, they may stop working with you. However, standing your ground when you need help, when you need something changed, this is important. When your medications aren’t working or you’re still in pain when you should not be, when your side effects are not something you can live with… Tell the doctor and make sure you get them to understand you. You NEED to be your own advocate even if others are helping you.
I will go further into that another day. Today I am back stuck with fear and frustration. These headaches, well, I can’t tell what’s bringing them on or what’s getting them to stop. I believe that I am dealing with the pseudotumor again. By the way, it’s called a pseudotumor because your brain is acting as if there is a tumor there but it is simply the pressure of your cerebro-spinal fluid. It’s not a “fake disease.” It just has misleading symptoms.
I am going to try to reschedule my doctor’s appointment. I want to make it earlier, if possible. I will need referrals. I do not want to go back on the medication I was on for the last four and a half years. I need to try to find a different solution and I am sure that the specialist I used to see will only want me back on it.
There are definite side effects from it that affect my life, and there are issues that have come up since starting it that mirror those of my friend who also takes it. She and I were talking last night and comparing diagnoses we’ve received since starting the Diamox. If I have to go back on it, my vision is kind of important to me, so I will find a way to make that sacrifice. However, if there are other options available, I have to try.
We all self-identify as certain things. For some, it’s being a free spirit, or being creative. Some people identify as intellectuals, others as sarcastic comedic relief. One of mine has always been that I am a sexual being (oversharing is another, obviously). I just have been for as long as I can remember. I was writing erotica before my first kiss. Diamox takes away my sex drive. It’s like losing a piece of my soul. Some people will think that’s overreacting, however, consider how you identify. If you’re an avid reader, what if someone took away your ability to read? Or to enjoy it?
So, this is where I am. I need to see doctors. I need to find options. I need to take care of myself and I can, and I will. I will advocate for myself so that I can try to keep that “piece of my soul” and I will stand my ground. Doctors are amazing people, but they are still just human. So, even if the specialists I do see recommend the Diamox, I will be assertive and let them know that I want and need something different if there is any chance to handle it another way.
~Brutally Honest Eccentric~
**Disclaimer: I’m not a medical professional. Everyone reacts to medications differently, this is about me, not meant to be medical advice for or against any medications**