10 things I wish I knew when I was diagnosed with NMO.
So, you’ve been diagnosed with neuromyelitis optica, what now? Here is a list of things I wish I knew when I was first diagnosed.
10 things I wish I knew:
1. Don’t compare yourself. NMO is a rare autoimmune disease that affects everyone differently. Some people wake up blind or paraplegic. Others, like myself, slowly get an increase of symptoms while others get a breeze of symptoms and then resume their normal lives. It just really depends on the severity and locations of your lesions.
2. Be open to all medications for different symptoms. There is no cure for nmo, neither a cure-all for symptoms (for now). There is usually medication to help prevent the progression of the disease like Rituximab or CellCept. There are also treatments to help “reset” your immune system like plasmapherisis. Then, there are targeted medications to help you manage already damage done. Depending on your symptoms you should speak to your doctors about those particular areas that you need help improving.
3. Having children is possible. Planning a pregnancy with your team of doctors is very important when deciding the time is right. According to the Mayo clinic, nmo is rarely hereditary, if that gives you some peace of mind.
4. Find a good team of doctors especially a neurologist who is accessible and willing to listen. Remember this is a lifetime disease and having good, reliable, and communicable doctors is a must. If your feeling judged or like a number in a crowd keep looking for a team of doctors that know that this disease should be treated just as real as its rareness.
5. Mentally prepare yourself to have an adaptive device in case of any downfalls. Not saying you need them now, but when the time comes you are prepared (mentally).
6. Avoid humidity and extreme heat! I can’t tell you how many times I’ve almost passed out every summer and when I finally realized that heat intolerance is a secret enemy of nmo, hydrate and ice all day!
7. Be as open as you can about your disease to your family and friends. There are two-part to this: 1) From my personal experience, I was an “I can do it by myself” type of person, always hesitant to ask for help but NO! Ask for help whenever you need it especially when it will prevent you from harms way. You’d be surprised at how willing people are when you simply just ask for help. 2) Being open about your diagnoses helps others understand you better. The next time your friends or family are getting together and invite you, they will be more understanding of you, your needs and you saying no.
8. Be prepared to lose and gain people from your life. Not everyone knows how to deal with a “chronically ill” person including spouses, family, and friends. I suggest getting a good therapist to help you deal with the changes that are coming your way.
9. You are not alone. There are many people on social (like myself), groups and nonprofit organizations that can help you connect to others that have nmo. Also, there are online groups that are very helpful and judgment-free (contact me if you want some suggestions).
10. Finally, living with a demyelinating disease is not a death sentence, more like a constant reinvention of an adaptive lifestyle. So, open your heart, spirit, mind, and be creative!
Make sure to check me out on social media for everyday life with nmo.
Stay fab!
Aldelly
