I have always been the type of person who is really bad at sharing their feelings. I bottle it all up and wait until it's shaken (like a Polaroid picture) A LOT, and then find myself not being able to sleep for nights in a row, or tears just come streaming down my face when the coffee attendant at WAWA tells me they are out of my favorite coffee. I like everyone to think that I am okay all of the time. I would rather help others with their problems than talk about mine, which leads me to this blog. This gives me the opportunity to sit down and think about the craziness of my past 2 years, face some problems, and hopefully help others going through the same thing.
When I was diagnosed with MS, I had a bit of an advantage since my dad is a neurologist but I was also overwhelmed with information (a lot that I didn't undestand) and I was hearing these medical terms and stats all the time about different therapies, symptoms, and tests, at home and at my doctor's office. I would then turn to my friends (who were absolutely amazing during this process) but many of them had no idea what it was, they would think I was dying, or I would get the question "oh, so do you have to wear a back brace now?" NO! Multiple Sclerosis and Scoliosis are not the same thing. All I wanted was to read a blog or talk to someone who was close to my age and understood what was going on! So, I have taken it upon myself to hopefully be that person for you.
I had all the medical and health information and advice I needed when I was diagnosed thanks to blogs and my doctors and my dad, but I wanted to know how other people my age told their best friends that they were just diagnosed with a lifelong, incurable, neurological disease. I had just moved into the perfect apartment in The Fan (Richmond, VA) with my best friend and began a new job but I had to wear an eye patch the whole time or deal with seeing double (or even triple sometimes) of everything. Should I tell my new employer that I was just diagnosed with this autoimmune disease? Should I just wear the eye patch and try to play it off as a joke? Should I tell the boy that I had just been dating a few weeks that my immune system was attacking my central nervous system for an unknown reason and there was no way to tell how fast it would progress? I HAD NO CLUE! I wish I had someone to talk to about how they went about this. I can ask my dad what therapy to use, and be trained by a nurse to give myself injections weekly, and read blogs about remedies for the flu like symptoms and immobilizing migraines that came with those injections. But how do I tell my friends I can't go to happy hour because I have to go home and inject myself with a medicine that will leave me with chills, an awful headache, nausea, and excruciating body aches for the next 24-48 hours. And how do I explain the baseball sized bruises on my thighs from my injections to my nephew asking what my "ouchie" was from. That's what I have created this blog for.
It took some time, and I'm still adapting and learning new things every day about how to cope with my MS, but I've accepted that it's time to define my own normal.