You are much more that your Multiple Sclerosis diagnosis. I like to candidly say that MS is merely 2 letters that are in my medical record. Sometimes those two letters impact me directly, but sometimes it is something else. When I was newly diagnosed (dx 2001) it seemed like I had way more “symptoms” because it seemed that nearly anything under the sun qualified as an “MS” symptom. It took me a few years to realize that on top of having this diagnosis…I am still a human being.
That sounds wrong, I knew that I was a person of course, I still had my college classes, homework, jobs and more to keep me from focusing too much on the diagnosis. It wasn’t til later that I realized how easily I was impacted by things that seemingly have nothing to do with MS though. For example it was a HUGE aha to learn that one of the most MS-ish symptoms I’d had could also be caused by a deficiency in B12. The symptom I am speaking of is called L’Hermittes, it is a totally weird symptom to experience that I can only describe as feeling like my spine felt like it was transformed into a guitar string that was being plucked every time I looked down. I was kind of excited the next time I felt the symptom because I had a new tool, I didn’t just have to wait and hope that the symptom went away, I could just try taking a vitamin, and it might work! I have been luck to learn about lots of random tips and tricks like this and because I have lots of little things to try it keeps me from going to the doctor so much. I’ve read a few Tim Ferris books (like 4-hour workweek) and I use myself as my own test subject. I am not as good about keeping notes and reporting back on them but for the things that affect me I tend to remember, or at least find myself checking the same sources to find the same answer.
Being a Mom is of course a huge part of who I am. I am also a graduate of a prestigious design school where I managed to earn my Bachelors of Fine Arts. I moved a lot as a kid from Alaska and went to more than 10 schools though still graduated HS on time. All of this was unfortunately before Facebook and so I’m not connected to as many childhood friends as I would like to be. Some people don’t realize that I was a single mom, before I created the Moms with MS sites but well after being diagnosed and becoming a mom I successfully worked at a software company full time for a few years! It wasn’t until after I got married and during my second pregnancy (and recession) that I was laid off and created the online peer support communities with my nervous energy between looking for jobs and nursing my baby. I’ve considered a huge amount of other career paths ranging from “Art Therapy” to learning some code and more. I’m still exploring and still learning every day! I love gardening too and have the idea in the back of my head that I should perfect the home vegetable garden and help people get their own started! I just need to neaten up my process…
There is of course even more to me but I’m really interested in hearing about you, and who you are other than being an “MS Patient”. I bet we all have our own unique stories and a lot more to talk about than just that one diagnosis. It definitely helps to get that story told but there is always more. Do you agree with this?