Pseudotumor Cerebri

“You’re fine. You should be fine.” These are the words that my new primary care provider said to me after I had dragged myself into her exam room hunched over in pain, feeling like the world was spinning around me. I had given her a laundry list of symptoms that I was experiencing, and she had a “logical” explanation for all of them. “I feel foggy all the time, like I’m here, but I’m not here.” “Oh, you’re just tired. You should get more rest,” she said. “I always get these headaches, and it feels like something is pressing behind my eyes.” “That’s just your sinuses — take some medicine for that,” she replied. “I’m always out of breath.” “You have asthma, so I’ll prescribe you an inhaler,” she claimed. “I feel like my vision is blurry even though it was fine a month or so ago.” “Maybe you need some new glasses,” my doctor said. My doctor thought that she had all the answers, but she blatantly dismissed all of my concerns. I walked out of her office feeling alone and defeated, but I took her advice and made an appointment to see an optometrist. I’d recalled that my kids’ eye doctor had these cool machines that took pictures of the insides of their eyes, so I made an appointment with their optometry practice. The day I walked in, I was greeted with kind smiles and warm words. “If nothing else comes out of this, at least I’ve found an office with kind people,” I thought. The doctor introduced himself, walked me to the back, and started to ask me a few routine questions. As we neared what we thought would be the end of my appointment, he said that he wanted to check the pressure behind my eyes. He turned to me and said in a gentle tone, “I’m glad that you came in.” My heart sank. I had no clue as to what could be going on. Why was my body rebelling against me all of a sudden? He said, “I think that you have something called pseudotumor cerebri. You have a lot of pressure behind your eyes, and you have swollen blood vessels. Most of them are bleeding. I want to take some pictures, do a field vision test, and refer you to a neurologist.” I left the optometrist’s office confused. How could this have happened? What would happen to me? Would I be able to care for my family? However, I was extremely grateful that we were starting to get to the bottom of what had been causing me so much pain and draining my body and mind for the last few months. I sat in my car optimistic about my recovery because according to the doctor, I would only have to take medication and then I’d be “fine.” Here we go with that word “fine” again. Of course, nothing was “fine.” It was just the beginning of an even longer journey. Listen to your bodies, folks. It’s unfortunate, but some health care professionals just want to put a band-aid on you and walk you out the door. If you aren’t getting the answers that you need, find someone else and advocate for yourself until a professional takes notice and does something to truly help you. This may not be easy, but it is necessary. Here’s hoping that you will be better than just “fine.”

If you’ve spoken to me intimately or follow my story and you’re chronically ill, you’ve probably heard me tell you to “be selfish.” After a conversation with an able-bodied friend who didn’t quite understand why I would tell people that, I thought I’d elaborate. I know this may be an unpopular opinion, but when you’re chronically ill, every little thing in your life can affect your illness. Stress with friends, arguments with family, drama, even being uncomfortable can cause problems with your health. A flare up, a hospital visit, extra medication — all things we dread and don’t need. Which is why when I say be selfish, what I really mean is that we have to be. We may not be able to handle your drama so we can handle our health. We may have to cut you off after repeated arguments to preserve our mental health to make sure we can battle our illness. We may miss small family gatherings to rest. You might not be able to come and stay at our house for six hours because sitting up that long is draining. See, it’s hard for people who don’t have to endure it to understand how difficult it can be to battle your own body. The one thing you’re supposed to be able to depend on betrays you with pain every day. Add on to that normal, everyday stuff, and whew, no wonder we’re exhausted all the time. So if we have to be a little selfish to have more strength to win against our bodies, then so be it. Honestly, in a way, it’s not only for us, but our loved ones as well. Being selfish at times allows us better days and more time to spend with them. So ask people to leave when you need to rest, exit stressful situations, don’t allow anything to disturb your peace, be selfish for you, for them, for your well-being. The right people will understand and if they don’t, they don’t need to be around anyway. Take care of yourself so you can be there for those you love and simply because you deserve it.