Dear Internet, I love you I hate you

 

I’m a late bloomer. I always have been.  It was my choice.  I did things  when I was ready and not a second before. When I was a child, my mom, with that proud  yet frustrated sound in her voice,  would always say to everyone, “ My Janie didn’t start walking until she could walk across the room.” “My Janie didn’t start talking until she could  speak in  a complete sentence.”  She was right, of course.  I didn’t wear makeup until one of my sorority sisters pinned me down in a chair and attacked  my face with blush, foundation and mascara. My godmother, who was my Auntie Mame, was the first person to go after  my eyebrows with a tweezer “ Janie, you are 18, no more unibrow… I am going for it and you won’t regret it”  My first kiss was in college with a guy named George, which was totally unforgettable…so how come I remember his name.  The only thing that happened on time was my period. (awkward pause)  Actually,  it happened on the day of my cousin’s  Bar Mitzvah…exactly one month after my 13th birthday..BINGO.  So, what am I getting at here.  Oh, right…the internet.  I bought my first computer about 10 yrs ago. I just had no interest in the internet or anything associated with it. Call it peer pressure, I guess. I gave in and purchased a Gateway  laptop. And, so my bizarre journey  began.

I tread lightly, at first. I avoided contact with anyone, mainly because I had no idea what the hell I was doing. I finally made  contact  in a CNN chatroom. It was fun. It was moderated by professionals and we interacted with eachother, the shows and their hosts. I was addicted. Abruptly,  my addiction ended when CNN decided, without warning, to shut it down.  I was devastated.  Now  what. How do I feed my new found addiction. Somehow, I discovered the Project Greenlight messageboard.  It was a community of creative, funny and slightly insane people. The site was run by Matt Damon and Ben Affleck, who used to make random appearances, usually in the middle of the night. I was addicted.  And, then, it shutdown.  Now what.  A group of orphaned PGL members wandered off to  a messageboard  run by Wil Wheaton, best known for his role in Stand By Me. We had a blast and called ourselves Monkeys.  Wil was Head Monkey In Charge. And, guess what…it was shutdown.  So, I started blogging  via LiveJournal  where friends from previous messageboards would comment.  I joined Myspace,  which I absolutely loved, until it morphed into some weird  NotMySpace.   I followed the crowd and ended up on Facebook and, lastly, Twitter.  I have to say that, I was never super interactive in any of the chatrooms or messageboards. I was a semi-lurker.  The  internet was still new to me and I am super shy. But, I did meet some fantastic people and was able to exercise my creative juices.  And, here is where my love/hate relationship with the internet was sealed

I totally trust people, maybe, a little too much. Who are these people. They are invisible entities hiding behind a screen. They could be anyone or anything. Sure, I have met or spoken to some. So, they DO exist. (snicker ).   I have met some wonderful people. I have seen relationships begin and end, have lost some friends  who I really cared about, due to illness or untimely accidents. I have helped support people who were going through emotional issues, and received support when I  lost my mom.  I have even had a couple of stalkers.  But, what I went through this past year takes the cake. And,  this is why I hate the internet.

Because I trust people, I began talking to someone who seemed sweet, caring and kind. Little did I know that they were bound and determined to smear my name and ruin a good friendship. This was based  upon delusions and unfounded jealousies.  They were very crafty and knew exactly what they were doing. The ultimate puppetmaster.  And, after the damage was done, they disappeared, although I do feel like they are always watching .  My point  is that, yes, the internet can be a wonderful place with incredible people. But, if you let  your guard down, it can be a very scary and dangerous place. I have learned to listen to my gut instincts.  That trust I  had, now, has a slight chip in it. I have learned valuable lessons from this sad situation. I wish no harm to this person. I feel sorry for them. I hope they seek the help they need and, also, hope they are not doing the same to others. So, tread lightly. Now, go enjoy the internet and go play……………with caution.

Oh, come on….you’re just no fun anymore

I’ve done so much in my life. I’ve had amazing jobs.  Jobs that had me working ungodly hours through the night. Jobs that had me running down hallways to meet deadlines. Remember that classic scene in Broadcast News, where Joan Cusack is sliding under file cabinets and falling down stairs….that was me. I have traveled to places where I would drag tons of heavy luggage through airports and hotels….LA, Mexico, London, Athens, Israel, Lebanon…. climbing mountain ranges, walking for miles in 100 plus temperatures, hitting the club scenes, dancing all night. Even when I was exhausted, I would drag myself to the gym and lift weights…ugh…I hated working out. I remember one winter we had a blizzard with about 27 inches of snow. Everything was closed… it was great… I didn’t live close to the gym, so I put on my snow boots and walked blocks, in the middle of closed streets, just to get to the mecca of weight lifting and treadmills.

One day, while walking to work, I felt a weakness in my knees. Ok, maybe I did too many lunges the day before…so. I ignored it, until it happened again…..without the excuse of the dreaded lunge. Did your knees every buckle for no reason??? Did you ever have the sensation that you couldn’t feel your legs?? Then, the sore muscles and forgetfulness decided to lay a visit on me. Off I went to the doctor….Oh, Jane, it’s probably stress related….you need to learn to relax. Off I went to the local Transcendental Meditation Center to get my mantra. But, that’s another blog. By the way, I love TM.  My symptoms seemed to be multiplying and getting weirder. The change in my voice, in my eyesight, in my balance,….did you ever start a sentence and totally forget what you were going to say?  Total blank. Off to the doctor….oh Jane… you may have fibromyalgia….it usually attacks women who are under a lot of stress…you know….you’re nuts!  But, Jane, you’re blood levels are abnormal in a certain protein…so let’s do an MRI of the brain. Oh, look……..you have white brain lesions….how interesting. Let’s do a spinal tap. Hell no doc!! Meanwhile, back at the ranch, I was getting weaker and wobbly…I looked like I had just left a bar after having an alcoholic binge.  Long story short…… Jane..you probably have Multiple Sclerosis, based upon your sypmtoms , blood levels and MRIs ( I’ve had 4)…..but we really should do that spinal tap…eventhough there are complications ….hell no.  Just DIAGNOSE ME. Sure, Jane… maybe you didn’t have fibromyalgia after all.

So, what am I trying to say in this blog. I am no longer able to do things I used to do. I can’t make plans because I have no  idea how I will feel from day to day. Sometimes, I need to use a cane. I have chronic pain 24/7. I have lost friends and relationships because I cancel plans, or I make excuses…or they just can’t deal with it.  How many times have I been told  “Jane you look fine…you look great…you don’t look sick…what’s wrong with you…you’re no fun anymore. That’s where my training in acting comes in handy. That’s where my humor goes into overdrive. Put a smile on that tired face…. make a joke…make em laugh… Singin in the Rain….weeeeeee…..

But, don’t feel sorry for me. That’s not what this blog is about. It’s about invisible illnesses. It’s about how doctors take the easy way out with a diagnosis, especially with women. It’s about embracing what you ARE and not what you WERE. It’s about loss but it is also about a new beginning. We all have  a story….which reminds me….I need to do a blog about finding my biological family on Face Book and how my past is like a Lifetime Movie. But, that’s another blog.

My WordPress blog is entitled “Symptoms of a Brain Cloud” … Jane vs the Volcano…..foggy MS brain….it’s who I am….