busy bee

I'm well known for starting things but then I get too bored, lazy, busy or start something new.  Examples of these things are knitting (the longest scarf I've ever made might fit a doll), cleaning (that's mostly because I find something else while cleaning and get side tracked), and now this - my blog.  I promise I will become a better blogger!

Looking back, 2012 has been a really busy year for me.  In the new year I turned 24 and I'm sure all of my new years resolutions failed, especially since I can't remember any of them.  In February I went on a trip of a lifetime with my best friend to Vegas where we shopped, gambled, ate and partied too much.  That trip was one of the first times I really noticed my MS fatigue; luckily I learned from that trip and now I throw in a power nap or more breaks whenever I travel.

A month later I got my definite diagnosis for MS and started looking into disease modifying drugs which were started in March.  Just in time for my next trip to the Dominican Republic with my mom.  That trip was much needed by both of us but yet again I learned more about my disease - the heat really turned up my symptoms but by the second day I had a routine of going back to my air conditioned room for a break and drank lots of water.

April to June flew by filled with little weekend road trips and a three week stay-cation where my parents were out of town and I was left to fend for myself.  I was a little scared for this as the last time they went away to Europe I ended up in the hospital with my "first" MS attack.  Luckily my amazing friends were near and I survived.  It was a little taste of freedom and I really, really enjoyed it.

The summer and fall were full of weddings, a new puppy, work, and everything in between was a blur.  Fast forward to December 19 - Christmas is next week! There's no snow and I'm maybe 75% done my shopping.   I can't believe how quickly this year has flown by! Hey MS, I survived another year!!! Take that!!

So here we are, two weeks away from 2013, and Positive Patty over here is thinking it's going to be a good one!  It'll start off with my 25th birthday, a cruise to the Bahama's, and moving to another city!!  Scary. Exciting. New. Can't wait.

Bring it on 2013, bring it on.

Stress is bad

My last two attacks have happened around the same time of year, right around now.  This time of year seems to be much more stressful for me.  I don’t know if it’s because of the holidays, work or change of weather.  Probably all of the above with work right on the top of my list of stress.  Don’t get me wrong, I absolutely love my job!  We have targets to hit and some months are easier than others.  For some reason this time of year is busy for us and our targets are a lot higher.

But also being that I know this time of year is when I usually have an attack, it’s almost like I’m waiting for my next one.  Sounds crazy but a part of me is skeptical  if the Rebif really is helping.  I’m hopeful that it is though, these shots every other day are not fun at all!  But there’s that slight chance that I can still get a relapse and now every time my eye hurts, fingers fumble, or when I trip over my own feet I start to question if it’s a relapse.  Hello extra unneeded stress!! 

I’ve been trying to get back on an exercise schedule so hopefully soon I can iron out a proper plan and it’ll help.  Plus I’ve been looking into yoga which I know a lot of my MS friends recommend.  For the time being I just need to sit back and relax more. 

I'm coming out...

So I’m a really busy person, I’m also a big procrastinator.  I’d like to apologize on my lack of blogging.

This past weekend I went out with a friend who knew I had some sort of medical secret as I had bailed on a hang out due to shot night.  I don’t use Rebif as an excuse too often but there are those nights where I’m already tired and know I’d be even more tired and cranky the next day if I took my medication too late.  On Saturday the question of what was wrong with me came up a few times but I usually replied with “it’s a long story” and then left it at that.  I knew I’d have to talk about it eventually but every time I rehearsed my speech in my head I couldn’t think of the best way to say it.  Do I go all medical talk? Should I bring up what the future might hold? Will I start crying? Then of course in my mind I would come up with the worst possible scenario for the other person’s reaction. 

But I felt it wasn’t fair to keep avoiding the topic so finally I just came out.  My reply to the question just rolled right off my tongue, “I have MS...multiple sclerosis”.  I didn’t continue, I waited for a reply which came instantly.  It was an accepting “that’s fine”, followed by a few questions asking what MS was.  I did have to educate a little bit, it’s funny how people don’t know a lot about MS.  I always make sure to say that “I’m not dying and I’m not contagious.”  After a few minutes the subject changed and It didn’t come up much the rest of the night.

So here I was all worked up and scared about how to tell someone about my disease and it wasn’t a problem at all.  I think I’m more worried on how people will act around me in the future.  I don’t want to be treated like a sick person with everyone asking how I’m feeling constantly.  Guess we’ll see if anything changes with this specific friend.

Does this make me want to tell more people? Nope.

I tried.

So I was really gung-ho about writing a new post tonight but my hands kill and it hurts to type. I'll try again tomorrow!

networking

In the past couple months I’ve turned to social media to find people in the same situation as me.  I created a separate twitter account that only follows MS groups or people that have MS.  Luckily there’s a popular hashtag of #msSucks and it’s easier to find the others.  Making these new friends has lifted a lot off of my shoulders.  There are days when I’ll post my mood, pain, or other issues and someone always replies with “I’ve had that before” or “feel better!”.  Knowing that I’m not the only one with this disease and going through these things makes me feel a thousand times better.   

There was one day when a client was in my office talking about how his 40 year old daughter was just diagnosed with MS and I piped up and told him I had it as well.  He just stared at me and said “but you look perfectly fine!”.  I was so angry when he left – if he could just walk a day in my shoes and realize that I really do struggle.  This morning for example, my legs were so stiff that it took me twice as long to walk to the bathroom.  Or last week I fell over trying to take off my shoes because I lost my balance.  Even on the weekend I couldn’t sleep because both my hands & arms wouldn’t stop tingling.  Walls seem to jump out at me and the floor is never even so I’m always tripping and bumping into walls.  Plus I'm constantly tired and have no energy when I need it.

The thing that frustrates me the most is when people make up excuses for me. For example when I complain about being tired, people often respond with "well it was a long day" or if I'm stiff in the morning they'll say "you just pulled a muscle" or "everyone is like that".  My favourite for when my leg was numb someone said "you're just sitting on it so it fell asleep" - for three months??? They take for granted how hard it is for me to function at the same level as them.  I don't like going around complaining to people all day and I want it to seem like I live a normal life...

justifying a $300 hair dryer.

I think my hands are affected the most. They often get weak, sore, tingle or tremble.  Doing things like washing, drying and straightening my hair is actually a lot of work.  My hands usually kill and tingle by the time I'm done the first part. So yesterday I invested in a $300 featherweight hair dryer.

There's a lot of little things people, (including myself) take for granted.  When my hand first went numb I couldn't do up my bra clasp in the back so I went out and bought a handful of new bras with the front clasp.  I then later bought smaller earrings I could sleep in so I didn't have to put them in every morning. Eve mitten gloves were way easier to put on because my fingers never managed to find the proper holes in regular gloves.  Basically all I'm trying to say is I have a shopping problem. But for real, as much as this MS thing sucks I still manage to make things as easy as possible for myself.

So if you ever see me half ass something or complaining that I don't want to do it, there's probably s reason.  Even saying that I'm too tired to go out is probably because I'm just too tired to go out.

falling apart

So I’m kinda sick, I’m not dying and I’m not contagious.  With MS there are symptoms and there are attacks/relapses.  Symptoms are the annoying things that come and go.  Attacks are things that last longer and usually mean the disease is progressing.   I have what’s called relapsing-remitting MS (RRMS) meaning that the attacks are followed by complete or partial recovery.

My eye going blurry was an attack called optic neuritis and my eyesight didn’t fully come until about 4 months later…sometimes I’ll still get a bit of blurriness when it’s really hot or I’m under a lot of stress – I’ll talk about that another time.

Looking at all of the different signs of ms, I remembered back to first year university.  I had a weird fuzzy feeling in my left leg – almost like when your leg falls asleep, except this feeling wouldn’t go away.  An x-ray showed that I had a mild spinal curve so the doctors just said it was a pinched nerve.  But the more I look back, it was probably my first MS attack.

A year after being diagnosed, my left hand went numb.  These things just happen overnight and for no reason.  I remember not having full control of my hand – things like typing, putting on earrings, doing up a bra, reaching in my pocket for my keys, were all impossible.  Like my leg and eye, the feeling in my hand eventually came back.

Now with MS there is no medication to make the attack go away.  The doctors might give you a round of steroids through an IV but there isn’t a guarantee that this will help.  It might make things go away a few months earlier, a few weeks or just a few days earlier rather than if you waited it out. 

I do take disease modifying therapy though.  I’ve been on a medication called Rebif for the past 7 months, it won’t cure the MS but it’s hopefully slowing the progression.  It’s a shot that I do myself 3 times a week.  It burns like a mofo but I guess I’d rather that instead of an MS attack…

  ­­  

here goes nothing...

Welcome friends, family, strangers and creepers.
I've been keeping a pretty big "secret" from many of you over the past two years.  In order for you to really understand where I'm coming from, I've finally decided to blog.  This is a really big step for me, but I'm hoping it's also a therapeutical help as well.  Bear with me - this will probably be just as hard to explain over the interweb as it is in person...

Two years ago my life completely flipped upside down.  I was diagnosed with a chronic, neurological-progressive disease called multiple sclerosis (MS).  Symptoms of MS are unpredictable and are different for every person - these include vision problems, fatigue, tingling, numbness, muscle weakness, pain, spasticity, memory, cognitive problems and a few other things.  Lucky me has managed to experience most, if not all of the symptoms over the past two years.  Some worse than others, which is where it all began...

It was the week after labor day, the weather had cooled down, my parents were in Europe and I was just enjoying some freedom.  I had come across sinus like headaches and a bit of a blur in my right eye.  I chalked this up to be something wrong with my contact lenses or allergies and figured it would go away.  The next day things didn't seem any better so I finally went to a walk-in clinic where the doctor didn't see anything wrong and told me it was normal.  September 11th, 2010 was a Saturday - I remember waking up and my vision had almost completely gone in my right eye.  Finally I decided that I see an eye doctor so I quickly called the closest one.  After a few tests, some fun dialiting drops and more tests the doctor looked at me and said "Don't worry, you just need to go to emergency RIGHT NOW and see the opthamologist that's on call".  DON'T WORRY?! Here I am, by myself, being told I need to go to the ER.  Luckily I was able to get a hold of my amazing brother who dragged his butt out of his bed to come drive me to the hospital. 

After arriving at the hospital, they took me in fairly quickly.  First they did a brief eye test (you know that poster with the letters that starts with a large E and slowly get smaller? well all I saw was a black blur..couldn't even see the E), then they asked a billion questions, drew blood, hooked up an IV and then disappeared from my room for a while.  Eventually a nurse brought me for a CT scan then back to my room where I sat and waited.  The whole time I had no clue what they were testing for or what was going on.  Not once did I see the opthamologist like the eye doctor requested.
Finally the doctor came back and said that they needed to run a few more tests and I had to see the neurologist but he wouldn't be in until the next day.  Lucky me got to spend a Saturday night in a hospital room on the neurological floor attached to an IV - still unaware of what was going on.  As I was wheeled up to my room my chart was sitting on my bed and all I saw was "multiple sclerosis" - but I didn't have multiple sclerosis? I just can't see! It's probably eye herpes or an infection from contact lenses? There must be a mistake!

After sleeping maybe 2 hours, showering, eating breakfast (what they say about hospital food is true...it looked nice, but man it was awful) and trying (failing) to get any information from the nurse, the neurologist finally made his way in.  He introduced himself, asked a few questions, did a few neurological tests and flat out just said "I think you have MS". That led to him saying that he had to do a spinal tap and an MRI, and since we were both already there he was going to do the spinal tap.  That might have been a good thing - if I had to wait for that then I would have googled it.  Luckily I had NO IDEA what it was until the moment it happened.  I will spare you those details, feel free to google it yourself.  This was followed by another IV, bed rest and lots of juice.  Then they finally let me go home - just to have more bed rest and drink more juice.

The MRI wasn't for another few days and by that time I had done a bit more research on MS.  Finally, my parents came home and the week after all of my results were in.  Mama came with me to the follow up appointment when I got the diagnosis.  The doctor did a couple tests, asked questions again then walked out of the room.  When he came back he handed me a book and said "You have MS, here's a book if you have any questions.  But please bring the book back when you're done with it".

Two years ago my life changed. Here I'm just hoping to explain a little bit more about the disease and a little bit more on my symptoms so everyone can understand.  I don't expect any pity parties, I just want support when I need it the most.