Today is Day 4 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge). The prompt today is:
Do you remember the day you were diagnosed? Perhaps you were scared, felt alone and surely you had tons of questions. Write a letter to yourself for the day you were diagnosed, knowing all you do now.
You’ve been waiting for this day for a long time. You’ve been diagnosed with Meniere’s Disease before, you just didn’t know that the doctor didn’t really diagnose you. He didn’t know much of anything. I’m sorry you had to go through that. He didn’t even put the diagnosis of Meniere’s in your records, he only told you that you had it. So today you sit there wondering….”Do I really have Meniere’s? Do I have some brain tumor? Is there something worse? Could it be something minor and I’ve been suffering for 7 years because I have been going to a doctor who “doesn’t know much about Meniere’s”? How could he have looked you in the eye and said that? After he has been treating you for SEVEN years? Now that it is in both ears he admitted he didn’t know much. WTF?
So today you are here at Duke Medical Center to see this new doctor. The doctor won’t even see you until you have been through a series of vestibular testing and had hearing tests. Don’t be so nervous. The tests aren’t as scary as they might be, the people who run the tests on you are very nice. Don’t get me wrong the tests are intimidating, but the wonderful people there who are taking care of you make it much easier.
After the vestibular testing and the hearing test you go back to meet the doctor and you are diagnosed with Meniere’s. The tests showed that you have vestibular damage, but there is no cause shown, and you have all the symptoms of Meniere’s Disease. Unfortunately, you have it in both ears. That is going to make it more difficult for you, but you are strong, you will be able to deal with it. The disease is progressive. You don’t know it yet, but you will lose your hearing. That is not as scary as it sounds. You deal with it. Really, it will be okay.
The doctor is very understanding and doesn’t pull any punches. He tells you that Meniere’s is one of the worst diseases he knows of that won’t kill you. There is no cure. There are some treatments, but not a lot. He also tells you that it is a disease of random punishment. He is refering to how the vertigo hits. He explains it is likened to a soldier at war. He knows he will be under fire, he just doesn’t know when. He is always expecting it. You will always be expecting the random punishment of vertigo. It’s a horrible thing to live with. But you will deal with it. One moment at a time.
You learn all of this in one day. Some things you were told gave you some false hope. You will learn there isn’t a “normal” in Meniere’s. There is a lot you will have to deal with over the next few years. Know you will be okay. The more you start to follow a mindfulness mindset you feel better about how things are.
The day of your diagnosis is just the beginning. You have so many more days that are more important than that first day. It was just the beginning. You have no idea what kind of ride you are in for. Don’t give up, even when it seems like there is nothing left. (don’t worry I know you don’t give up….won’t give up!) Focus on each day as it comes, don’t worry about tomorrow so much. Try hard not to focus on the past. It is over and you can’t get it back. Focus on today, right now. Make today the best you can. But remember, we all have bad days. Be gentle with yourself.