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Kristin's Story
My name is Kristin Lee I am 36 years old and have been married for almost 15 years and have been blessed with two beautiful kids, who are now 13 and 14. I have had Optic Neuritis for more than 8 years. I cannot say that it all started with a dramatic episode that caused me to be rushed to the local hospital. It actually was quite by surprise that I even realized I was having problems. I was at the local mall doing some shopping with my children, I have had been having problems with my right contact lens, it seem to have a tear or something stuck to it causing me to see a blind spot out if that eye. My optometrist’s office is located in the mall so I decided to stop in with out an appointment to buy a replacement lens. My doctor insisted that I have her look at my eyes quickly just to make sure that it was just the contact lens. After a quick look she said I needed to call someone to pick me up because I should not be driving. She told me that my optic nerve was swelled and that I would need to have and MRI immediately. An MRI, for what? I mean I just came in for a contact lens right? After some explaining that this was serious, my Doctor told me that this was a sign of MS. Well I felt lost, scarred, confused and still had to keep it together I had my kids with me. After getting more information on what was happening with my eye the stress of the situation really started. See I was told an MRI was imperative but I had no health insurance at the time. We managed to pay cash for the first one and it was perfect, no lesions, no MS. The doctors treated me with IV steroids at a hospital in the city. It was worse than the vision problems itself. I had steroid induced psychosis. What a nightmare, on the second day of steroid treatment I lost it in the hospital and removed my own IV left the hospital and began walking in this city with no idea of where I was. I began having panic attacks daily and was unable to leave my bedroom for days. I lost 12 pounds. I had to start seeing a psychiatrist. Eventually the majority of my vision returned after about 3 months. Time had past and all of the neurologist seemed to think it was just a fluke and would not happen again. Well about 6 months later I had a second attack on my right eye this time. It was the same drill IV steroids again but this time with nerve medicine to keep the anxiety in check. This cycle has continued for over 6 years now and I have had more attacks than I care to count or keep track of. I have severe bouts of fatigue and summers are long with the heat and humidity. We try to stay by the pool and avoid amusement parks, zoos or any outdoor activities during the hot months. My body seems to be more tolerant of the steroids now though. I also have a home health nurse who does the treatments at home so it keeps things more normal for my family. As far as other symptoms go, I also have complete heat intolerance. If I raise my core temperature I loose my vision in my right eye completely. I have fatigue a lot. I also get swelling in the joints of my hands and feet as well as a burning sensation and I have severe frequent migraines. To date I have not received any other diagnosis other than Chronic Optic Neuritis. Sometimes I feel frustrated that no doctor to this point has been able to tell me why this is happening and the reality of losing a little more of my vision with each new attack sometimes seems overwhelming. Depression seems to go hand in hand with this condition for me. I have been battling ever since my first attack. This is my journey. I have not been able to find any one else with ON alone, finding the Transverse Myelitis Association has been great for me and hopefully I can find others who are experiencing similar circumstances. Having a good support system I feel is the key to staying positive. |
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