Tiny Daggers

I only have a year left of college until I graduate.  I should have graduated a few years ago, but numerous hospitalizations and health issues have held me back.  When I was previously updating this blog, I was studying neuroscience -- neuropsychology to be exact.  I wanted that phD so badly I could taste it.  I have one year left studying pediatric nursing.  I often think about what life would like now if I stayed with science.  Instead, I'm bartending, slinging drinks and settling for the next best thing.  I do that a lot now -- settle for the next best thing.

That brings me to ER.  ER is a best friend of mine, and he's known me since I was just 16 years old.  My family adores the hell out of ER.  He has a great job, has his shit together, is respectful, thoughtful and an overall perfect guy.  There is absolutely no question that if I were having a flare up, he would be there for me in a heartbeat.  If I were lying in a hospital bed, I wouldn't feel insecure about how he felt about it.  We talk every single day.  Good morning and goodnight texts, even stupid random pictures of what we're up to.  And just like my career, I often think of what life would be like if I was with ER.

Then I think about what life would be like if I stayed in the Pacific Northwest, or even in Philadelphia.  Instead, I'm living in a city that I wasn't always 100% a fan of, but I'm making the best of it.

Finally, I wonder about R, and what life would be like right now if I were just upfront and honest, instead of an irrational loonytoon, doing irrational shit because I was a big puss about him seeing his vision of a perfect girl being plagued by health problems.  With him, there was always a feeling of us vs. the world, and I loved that.  Like no matter what life slung at us, if we had each other, everything would be alright.  I didn't feel lonely knowing that he was out there.  My best friend Monica asked me last night if me and R were too similar, but that's just another thing I love about him.  It's comforting.

Best friends will call your ass out

If things can't be repaired with R, I will be more open about dating.  Strangely enough, guys he knows will reach out to me over Facebook or Instagram and ask me out on a date.  They have no clue, of course, so it's strange to say "you're sweet, but I'm currently involved with someone", when I want to say "listen, I'm currently involved with someone and that someone is your boy".  There's also a girl in me and R's orbit that I've become close with.  It's always awkward to say no thanks, even though I'm technically single, but currently in limbo with someone I'm head over heels about.  I hate being in limbo, but I see things with me and R to be potentially really special, and having a strong relationship that's not exactly typical.  And that's another thing -- we are so bizarre, and life with him is strange, but I fucking love it.  However, I will be open to the possibilities if things don't work out.  Keeping walls out can become exhausting and at this point, I'm over it.  I'm ready for something different.

Atmosphere

Back to yoga

It's been a few years, but hi readers!

If your new to this blog, let me give a quick run down:

Years ago during a MS support group, the idea of starting a blog/vlogs and documenting your journey was encouraged.  Soon enough, I'd gain a decent following, met extraordinary people and great friends (a few I still keep in touch with).  It was therapeutic.  I'm not very open with discussing all the feels, but having this blog really helped with that.  I'm opening it will help again, and perhaps help other people new to this disease reading this.  I've unlocked all of my previous entries and will be unlocking my YouTube videos.

Since I last posted, I moved away from Philadelphia and made roots in Buffalo.  Strangely enough, MS is super prevalent around these parts.  I don't have to explain to a single person what Multiple Sclerosis actually is.  However, over the years I became withdrawn.  No longer being active in the MS community, I wasn't even telling people I had MS.  I thought moving to Buffalo would give me a new identity.

Living with this disease has absolutely been no picnic.  I stopped spending time with friends.  I stopped dating.  I stopped taking overall care of myself.  I became angry at the world, kept people at a distance and avoided my diagnosis at all costs.

Life was going well, blissfully ignorant, with my head in the sand.  Until I met someone new.  Let's call him R.  Now R is much younger -- I am talking real cougar, 9 year age difference.  What started off as what I wanted to be short-lived and inconspicuous, I would quickly become aware that this was the real deal.  Even though I've known him for 2 years, I've know him for much longer -- he was the image in my head of the ideal partner in crime for myself.  Plane going down levels of anxiety would set in.  After constantly being told you are perfect by someone you care about, it puts a lot of pressure on a person.  Telling someone you are romantically interested in that you are disabled with a disease that has no cure, panic and depression sets in.

Then my vision started to become blurry, the next month I had pins and needles in my hands, and then the following month I started to have difficulty walking.  I had to wake up to reality that this person who has put me on a perfect pedestal would see me at my worst.  Then my mother would validate my worst fear out loud -- he is 25, you are 34 with a progressive disease, so why on Earth would he stick around?  Like that, I would be at war with myself.  One side started to purposely try and sink the ship.  The other would put him to the test to see how he would be in crisis.  Lies, deception, and an overall shit-show would soon happen once my health became worse.   We had an expiration date and my mother could be right.  But with talent, I pushed away.  Ask anyone with MS and they will tell you that feeling like a burden is our worst fear realized.  I wanted R to not see me as perfect, as it was too much pressure on this sick girl's shoulders.  I cannot be perfect if there may come a day where he would have to help me take a shower, help me dress myself, or hold my hand when I'm unsteady.  And let me say that he is possibly one of the most unreliable people I have ever known.

He told me the other day that I ruined us.  And I did not because I purposely wanted to, but because of my own insecurities with being disabled.  It took burning what I had with R down to ash to realize that.

So here we are.  Losing someone I truly love very deeply was a wake-up call to get shit together, to take care of myself better, and to stop sabotaging life because I am scared shitless.  I need to work on myself.  In my 34 years of being on this Earth, I had never felt that way for another person.  In the process, I ruined myself as well.  And if I am going to welcome any relationships or friendships in the future, I am going to have to stop being a scared, self-sabotaging shithead.

I don‘t have many good years left, I need to start living.  I need to get out of my head and enjoy life for what it is.

I hope to reconnect with a lot of you soon.  This blog needs an extreme overhaul.

A Very Upstate Road Trip

SO! I'm back from my road trip. Made stops all over, saw friends, hung out with people I loved, and had a weekend of "firsts".



The other night, I was taken to a typical hipster bar, where I played $20 worth of music on a jukebox.  Boys were treating me like a shiny new toy (and I was like a kid in a candy store).   I was bought many, many, many, many drinks.  So many drinks were bought, in fact, that I lost count somewhere during those hours and didn't realize how hammered I was until I laid my head down on a pillow.  I wake up, I have a crap load of phone numbers in my phone with no names, or names completely misspelled because my hammered spelling isn't so great and a boat-load of new friend requests on Facebook.   I wake up with the worst hang over in the entire universe.

I wake up to dumb drunk texts to a large number of boys I've dated.  Booze is a terrible truth serum.   As a hard-ass, I don't trust talking about my feelings and I'm terrified of showing vulnerability.  So when I wake up to read text messages pouring out my most intimate feelings...?... yeah.

Boozy dancing on Friday

 I'm a drinker.  Not being big on beer, I stuck to hard alcohol the entire night.   From what I can remember, I had one cocktail, 7 vodka tonics and I can only remember 6 shots.  I was a boozy-nightmare mess, and I spend the entire next day ralphing (booze has never made me barf).
However, the other day, I did get the chance to get up close and personal with my first horse.   It took me about a half hour - forty minutes to warm up to this monster beast.  With little itty bitty baby steps, I approached this monster closer and closer until I was right next to it.  Listen, I would have rather of been riding a glass elevator to the 100th floor at that point.   A friend took my hand and gave me a horse brush -- the only thing I could think was, oh hell naw.  Getting into brushing the horse, I thought, hey this ain't so bad... until the damn horse made that horse-y noise and put it's monster long face into mine -- I am surprised my pants were dry.


And I've never been camping.  I'm a city girl -- I clutch my purse tight, I carry weapons, silence is a strange occurrence, I wear high heels because I can hail a cab at any time and the bugs I'm used to are roaches and centipedes.  Being in the deep woods does not sound like a good time to me.  I mean, the only time I'd think being in the deep woods would be fun if I were staying in a cabin (with electrical outlets and a toilet) with a significant other during a romantic getaway.  So, when I'm in the deep woods wearing TOMS shoes, with mud up to my ankles, spiders crawling on me, hearing snakes slither in the grass and being bit by a million bugs... it's not a good time.  I'm not a fan at all.  At one point, I saw people coming from the woods with flashlights and my automatic reaction was to RUN, BITCH, RUN because I thought it was the police breaking up the party.

The next night, I would check myself into a hotel room, and trade mud in for a jacuzzi.



Anyway, a lot happened the last few days and I'll update here and there about it.   The whole experience road-tripping is pretty hilarious.




This was from my boozy weekend, but I'm only posting now:


I always said I believed in you.  And with every kiss I resented you because your feelings never seemed to get in the way.  I dig down deep for forgiveness, but still you're always busy placing the blame.  This isn't about right or wrong now, not about wasted time.    No, my love, we can't be friends.    In fact I liked you much better when you'd just pretend.    You'd tell me the things you've never told a soul, the things that keep you up at night.   I always said I believed in you.  And I know that you never cared at all.   I just liked you better when you'd pretend.

A New Beginning

I received quite a few messages from my past post about the 7 Stages.  I wish there was something more I could do, I really do.

Some people could very well move past though stages with grace, and some might become stuck.  I know it took me a very, very long time to get through those stages and I'm still very much in the process of acceptance.  So yes, I get a lot of you... I try to.
 

The old me after a night of boozin' @ 24 yrs old

Once upon a time, there was a girl who had many many friends (but not really the friends you wanted to have), she lived life in the fast lane and never looked back.  The only thing I cared about what was happening in the present, which wasn't much at all, but at the time I thought life was pretty damn rad.  But it took me a long time to figure out that I'm not that person anymore (probably up until very recently too).

There came a point where I realized I had to start all over again -- new job, new school, new friends, new boyfriend, new everything.  I also realized that dealing with situations, loving someone, friendships, all of that I once thought I had a handle on would never be the same.  After my diagnosis, I had to re-learn everything all over again, like a newborn.  Old me would have dealt with situations by pretending they weren't there, drinking the problem away or doing stupid any immature kid at that age would.  So not only was I now older, I had extreme health issues.

Being in school again at my age is no picnic.  It's hard to make friends... am I expected to do keg stands with 22 year old kids?   And doing makeup, something I loved to do, was more difficult with symptoms of Multiple Sclerosis.  I had to learn new techniques, I had to go to classes again and re-build my reputation because who wants an artist with an uneasy hand?

Most recent picture of me and my BFF Fio

And friends... well, true ones, of course.  I still know the people from the past, actually tried to resurrect them again somehow trying to build a mirage of my old former self.  In all honesty, I hang out with the same few people, people I truly love and consider real friends.  Sometimes I'll spend time with friends I haven't been so close with; a drinking buddy is more of a proper term I guess. Trying to make new friends in your mid-20's with a disease isn't so easy.  All the people I've known for most of my life had moved, "grown up" or couldn't handle me being in a wheelchair.  Like I was saying to someone earlier tonight... tons of people I know will write on my Facebook wall about how much they miss me.  It kind of irritates me, you know?  I'm not dead.  I didn't move 1,000 miles away.  Call a bitch up, yo.  Seriously.  You can't miss me that much if you can't use a phone.

And dating is just a disaster.  The first time I had my chance at it, my first gut-reaction was to pretend I was the girl I used to be in order to.... I don't know.... impress.  To make it look like I was like any other normal girl.  I said dumb shit.  I did crazy things.  Think of it this way -- you begin dating as a whole new you: new set of emotions, new set of goals, with a new personality.  I had a handle on my past relationships because I was comfortable with myself, I've had serious boyfriends before and at the time, they were successful... but now I'm different.  And even if the person you are with considers it 'games' (I hate that word), I understand you ladies.  To the way you handle a fight, to the way you show feelings, to the way you open yourself up to someone is all brand new territory.  We are all capable of crazy shit.  It's almost like you are entering in your very first relationship.

On the other hand, I'd still try to use those immature techniques I did when I thought I knew-it-all.  I remember once, I purposely started a fight just to see a reaction.  That's kiddie shit, that's shit I did when I was 23 years old.  Now, I knew very well I was doing it, although I didn't like doing it, I didn't want to do it, but up until that point... I had absolutely no lessons on healthy communication.  I'll always feel bad for Chunks in a way, because he met me at a time when I was re-building myself and I had absolutely no idea what I was doing, behaving in a way I would never behave, a way even my own friends found foreign to see.  I put that guy through hell at times, and for what?  To try high and hell water to have him not see me as a 'sick girl'?  Luckily, I can learn and take away from that.

On the upside, I feel more confidant than ever.  I can honestly say I know what I want.  If in my heart I feel like what I'm doing is the wrong way to handle something, then now I know which way is right.  Do you understand?  I once had a fear the people I've grown close with wouldn't like the 'new' me.  They met the old one, ya know?  But these past few weeks have been incredibly amazing because it's the first time in years I have been able to be myself -- whether someone likes that or not.

I wish you guys the best of luck.

The 7 Stages Of Grief

Any Psych 101 student can explain to you the Kübler-Ross model, commonly known as The Five Stages of Grief.  Kübler-Ross added that these stages are not meant to be complete or chronological. Her theory also holds that not everyone who experiences a life-threatening or life-altering event feels all five of the responses nor will everyone who does experience them do so in any particular order. The theory is that the reactions to illness, death, and loss are as unique as the person experiencing them. Some people may get stuck in one stage.

__________________________..............__________________________

 

STAGE 1. SHOCK & DENIAL  (2006)
You will probably react to learning of illness with numbed disbelief.  You may deny the reality of the diagnosis at some level, in order to avoid the pain.  Shock provides emotional protection from being overwhelmed all at once. This may last for weeks, or in my case, years.  

A lot of friends and family would ask me, "why didn't you tell us sooner?", but in all honesty, it takes some time to accept the news on your own before having the time to tell others.  I always believed telling people your diagnosis was making it a reality.

STAGE 2. PAIN & GUILT  (2007)
As the shock wears off, it is replaced with the suffering of unbelievable pain.  Although excruciating and almost unbearable, it is important that you experience the pain fully, and not hide it, avoid it or escape from it.  

I turned to alcohol.  Some turn to drugs, others turn to casual sex.

You may have guilty feelings or remorse over things you did or didn't do, or what you did to deserve it.  Life feels chaotic and unstable during this phase.  

I struggled daily with the thought of karma -- what did I do to deserve this?

STAGE 3. ANGER &BARGAINING  (2008)
Frustration gives way to anger, and you may lash out and lay unwarranted blame for diagnosis on someone else.  Please try to control this, as permanent damage to your relationships may result.  Even though MS claims it's not hereditary, I felt as if my father done the damage (MS took the life of his sister's son; my cousin).  This is a time for the release of bottled up emotion.

STAGE 4. "DEPRESSION", REFLECTION, LONELINESS (2009 - 2010)
Just when your friends may think you should be getting on with your life, a long period of sad reflection will likely overtake you.  This is a normal stage of grief, so do not be "talked out of it" by well-meaning outsiders.  "Things could always be worse," people say.  During this time, you finally realize the true magnitude of your diagnosis.  

I isolated myself on purpose -- after my diagnosis, I swore of relationships for 5 years.  The most time I'd spend with someone was up to 3 weeks, and out the door I went.  I didn't feel worthy of a healthy relationship.  I felt damaged, unwanted and not needed.  I always focused on memories of the past.  I have never felt that truly lonely in my life during those years.

STAGE 5. THE UPWARD TURN (End of 2010 - 2011)
As you start to adjust to life with a diagnosis, your life becomes a little calmer and more organized. Your physical symptoms lessen, and your "depression" begins to lift slightly.

I was sick -- I cannot change that, it is who I am.  Accept me as I am or not.

Make your diagnosis a positive attribute in your life, like I did when I started this blog two years ago.

STAGE 6. RECONSTRUCTION & WORKING THROUGH (2011 - NOW)
As you become more functional, your mind starts working again, and you will find yourself seeking realistic solutions to problems posed by life with a diagnosis.  You will start to work on practical and financial problems and reconstructing yourself and your life with health complications.

I started dating again, not looking for a serious relationship because I knew I wasn't ready, but I started dating to find company, just not casual sex/dating.  I would meet the first person I'd care about during this period, and even though it was shaky, I learned how to care again.  I would learn what it took to make a relationship healthy, since it had been almost 6 years.  I started opening up to people I cared about, sharing my thoughts and feelings with others.  And I started to love myself again. 

I also learned you could move a thousand miles away, find new friends or try to live a new life -- but you will never be happy, no matter where you are or who you are with, if you aren't happy with yourself.

STAGE 7. ACCEPTANCE & HOPE  (2012 - NOW)
During this, the last of the seven stages in this grief model, you learn to accept and deal with the reality of your situation.  Acceptance does not necessarily mean instant happiness.  Given the pain and turmoil you have experienced, you may or may not return to the carefree, untroubled YOU that existed before this tragedy.  But you will find a way forward -- you will find a NEW you.

I feel ready to share my life with others, I feel ready to let love in and begin a healthy relationship.  I feel ready to show my life to someone I care about without the fear of them learning how damaged I had become because of my diagnosis.  Finally feeling carefree and able to relax again, I haven't felt this calm in years.  I'm finally happy again, with the new person I had become.

Even In Your Darkest Hour, I'll Stand By You

 "The worst lies are the lies we tell ourselves.  We live in denial of what we do, even what we think.  We do this because we're afraid.  We fear we will not find love, and when we find it, we fear we'll lose it.  We fear that if we do not have love, we will be unhappy."

                                                                                              -- Richard Bach

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First and foremost, I want to thank my readers who donated.  Me and my family were able to pay a huge bill for my rehab back in November.  We appreciate it so much, and when I showed my mom the amount in PayPal, she cried happy tears.  So, thank you so much for being awesome!


Second, I started this blog a little over two years ago.  I follow many blogs from authors who are sick, but no one really went into detail about what life is like actually being sick.  And even though we are all different in our own right, we have one thing in common; our health.  I can write a million entries about case studies, cures, but I want disease to have a face.  Through reader's submissions, through stories of my daily life -- I want the disease to have a face, a story, a human being behind it.

_______________________________________________

I've been eating super healthy, which is a big deal in my life because I just don't cook.  My fridge has been packed with green, with fruits and water bottles.  I've only had a few drinks in the past month, and this no boozing policy made a giant difference.  I haven't felt this energized in awhile.

The other night, I was out with a friend and I was leaning against the door frame of my car when my friend went to shut the door -- but it shut on my damn hand.  Bounced right off.  I've been in incredible pain the past few days.  I was staying at a friend's house ❤ the other night, and he gave me some Motrin and an ice pack.  It helps, but the pain gravitates from hand up to my shoulder blade.  My boss helped me get an quick appointment to get an X-ray this morning and I have a small fracture in my thumb.  MS is funny, it can flare-up with the smallest thing.  Even though my body is fine, the fracture in my hand is making my hand seriously shaky, and nuts with pins and needles.

I was watching an interview with Mitt Romney's wife, Ann, who suffers from MS and cancer.  A reader recommended it to me (thanks Shawna).  I thought it was interesting she said MS is much more difficult to deal with than cancer.   I agree with her -- MS is unpredictable and has no treatments.  There isn't much known about MS as there is with cancer.  What do you guys think?

Spring break is going on in session, but work is going really well.  However, I'm trying to look for makeup jobs again now that I'm feeling better.  I didn't want my MS to damage my reputation, so I tried to duck out for a quick minute until I felt I was ready to have a steady hand to do it again.  I have a wedding coming up in two weeks I'm working, I'm sure I'll be busy during prom season and I've been talking with a salon by me to come in and do appointments.

And one last thing... It is legit awesome to have someone special there you care about and who cares just the same about you.  Someone you can talk about life, love and hardships with.  Someone to share your day with.  Someone to go to with bad news, with good news.  I've been missing that in my life for a long time, and it's really sweet to just sit back, relax and let the positive take over.  The things coming out of my mouth lately have been super corny, but I like it.  I'm fiercely loyal and protective.  When I truly care about someone, their happiness is a priority of mine.  I cannot see someone I care about in pain, or suffering in any way, because that makes me suffer as well.

you can lose sight of it all.
and the darkness inside you

I know can make you feel so small.

if this world makes you crazy,
and you've taken all you can bear,
you call me up.
because you know I'll be there.

Chapter Two

I have video I'll put up soon from my doctor's appointment today.  Everything is in remission and I've got a clean bill of health!  Although, I gained a few pounds, but I think it's mostly muscle from jogging in the morning (or at least I hope it is, ha!).  I'm now at 144lbs.


I have a.. sorta?  date tonight.  We've been texting back and forth all day, stuff like, "oh my God I'm so excited!", "can't wait to see you!".  However, I won't be going into detail or writing about this very handsome man.  He's the crush I was talking about -- though, this crush stems back for many months and found out he's had feelings about me for a long time as well.  And wooo!, readers, let me tell you... he's a damn handsome man.  I only mention it now because it's the first time since my diagnosis of MS I've been truly honest and open with someone.  Like I've said before -- I'm super happy about it and really proud of myself.  And it's the first time in years a guy will actually get to know me, know who I really am and what my life is really about. 


Have any of you had similar experiences about pretending to have a semi-normal life?  Trying too hard in the name of hoping no one sees you as the sick friend?  Acting totally crazy because you're trying to be something you're not?  Send in a reader's submission!


Vlog coming soon.


We're calling this Chapter 2:  Doing It Right.

A Giant Corny Crush

I'm high-school crushin' here.

I might have talked about the guy before, but I'm not going to go any more into it.  It's someone I used to hang out with, but it kind of got... interrupted?  Anyway, we always remained in touch and we've become really close lately.

I'm crushin' like giggling fits, re-reading a text 4 times over before you sent it out... but he has no idea I'm interested.  Maybe he does.  We text back and forth almost all day, which is huge because I'm not much of a text-er, but I seriously feel 12 when I hear that "beeeep!" from my cell phone.

However, this time I'm going to try something different.  If I'm too sick to go out that night, I'll tell him.  If he wants to know where I was Wednesday night, I was at a support group.  If he wants to know about my health, he'll know.  If he wants to meet Fio, he'll meet her... he'll meet my friends, and not 100 acquaintances.

If I want to get involved with someone, I want them to like me for who I really am and not appear to be.   There's no pretending to be normal here -- I am who I am, like it or not.  My life, my true life, will be open and waiting to be discovered and not a persona of a normal girl I wish I was (or the one I used to be).  I'm doing the exact opposite I did with Chunks... which is, I guess, being myself and not pretending someone I'm not.  I've had a lot of clarity to look back on things.  And although I know in my heart I'm over Chunks, and those feelings aren't there anymore, I'm not over what I've done.

And one last thing I'm going to do right:  be friends.  I want to get to know him and I want him to get to know the real me before all that smoochy-face stuff happens.  I want to see if a friendship can build a solid foundation.  Then, just let things fall into place and enjoy it for what it is.

Not looking for a relationship, but just someone to have an awesome time with.


I'm just... happy.  Having more clarity, my head is clear, my heart is full and I'm just happy.  For the first time in awhile, there is no seriousness, no drama, nothing bringing me down.  I wake up in the morning and I get EXCITED.  Crazy!  I was in a funk for the longest time.  Over analyzing everything,  over thinking everything, going stupid crazy worrying about shit that had absolutely no merit... and finally... FINALLY, I am able to just sit back and enjoy it.  And that's saying a lot.

So, I'm just going to be me.  I'm going to try to be a little more social at school.  I'm moving soon and I'll be meeting new people.  I'll make it a point to spend more time with friends.  I'm making sure I don't let a fog of booze take over my life, because I really want to enjoy life for what it is.  I feel like for months, I've been trying to solve a puzzle and I had no idea what the answer was, what I was doing wrong and why I wasn't satisfied.  I don't know how to explain it... but I feel awesome.

Dear Natalie

Dear Natalie,

the other day I went to check your blog to see if you did an update and I saw the last (and sadly, the only) post. I was very sad when I saw your video and I seriously cannot believe there are that many immature people out there. As I commented on one of your posts, I really do admire you, and you really inspire me! I don't have MS, or cancer, I'm just a regular 19 year old girl (only struggling with my weight)...
One of my best friends was diagnosed with cancer last september, and I personally became even closer to her because of this... I cannot even imagine why people need to be so mean to others.
I totally did not plan what to write in this email, I just wanted to say that I still will support you even though you are not going to blog anymore.
Also, I think that you've been very brave in the first place to write your life, your feelings, everything in a blog. I like to think I got to know you in person, and even if it sounds creepy maybe I feel you were like a new internet friend to me kind of :)
Stay strong girl! Don't let stupid people put you down! :) They don't know who you are, how your life is, and most importantly they don't live in your own body so they will NEVER know how you feel if they don't experience it.
Hope I helped you a little. <3 I really felt soooooo sad when I saw your last video! I wanted to hug you but it's not even possible since you live in the US and I live in Italy...!
I send you a huge hug from overseas.
Much love!
xoxo
Susi

PS:Hope you answer this email :)

I'll do one better and reply to you via blog.  I get a few e-mails a day but this one really touched me.  You've really understood my reasoning for running this blog -- I wanted people like you to feel like they have a friend.  Whether you have Multiple Sclerosis, cancer, or just a cold, we all share something in common... we all need someone to relate to.  We all need to feel like we are not alone.  This world is cold and cruel -- but it doesn't have to be.

No matter how busy I've been in my life, I have always tried to update, no matter the time or location.  This blog started off with about 50 readers and now I have up to 1,400 followers.  Even though I've been going back and forth about the future of this blog, I'll continue updating.  I figured if I closed it down, it would be "oh well, time to find another blogger", but I've received an overwhelming amount of e-mails about how upsetting it is that I've decided to shut it down.  Even to the point of deleting (which I was able to restore, just in time).  I'm proud of what I have written; happy times and bad.


I want to say how of an incredible friend you are to stick by your friend like that.  She's going to need you and she's lucky to have a person like you in her life.  Words like yours get me through the tough days.  In my real life, it's extremely difficult for me to talk about my feelings.  My blog has been an outlet for that.  My friends read it.  My family reads it.  The people I date read it.  This blog is me; completely raw and unedited.  And this blog is completely dedicated to people like you.  I wish you the best of luck and love in your life.

Thank you all for reading and I hope to continue to bring my friendship into your lives as well.

Natalie xx

You Are Not Your Diagnosis

She'll be the same, just improved & with a bigger heart

I was talking to someone earlier about telling people about a diagnosis of Multiple Sclerosis. You see, MS is tricky – there is no cure, the treatment is not very reliable and not many people know what it is. But more importantly, when you are diagnosed, you need time to accept that diagnosis before you can tell other people.

And this is a great topic, because my anniversary is on Tuesday.

When I was first diagnosed, I lost my shit. I really had no idea what MS was and there were many times I sat in the rehab “rec room” to use their public computer and Google what I should expect. It took me awhile to accept that diagnosis, it took awhile to get over that initial shock and I was terrified about peoples’ reactions. You can really tell the bond between friendships when you are sick. I’m warning you now: some of the people you think may be there to support you, may not be there. When I was in the hospital back in November, the guy I lost my virginity to (and that old group of friends) was there and supported me every single day. Crazy, right? At the same time, you might become closer with those you didn’t think you would, like the example I just gave. When I really needed someone in the hospital, when I needed someone to hold my hand and just be there – it was one of my ex-boyfriends. We’ll always love each other. When I called him and told him what had happened, he drove right over. He pulled up a chair, made me laugh and watched television with me for hours.

When you are going to tell your friends about your diagnosis, start with those who have been through the worst with you. You will need someone to be there if you fall. Give the news some time; let everyone sink the information in. It can be a really beautiful thing when people begin to support you in ways they hadn’t before. And when you tell… let’s say a significant other or someone you are dating, I don’t know. I’m not an expert, clearly, on that. I’ve always found dropping, “hey, I have MS” a lot easier than saying “hey, I have cancer”. Think of it this way: if your partner leaves you because of your diagnosis, you did not need that person in your life. I don’t know about any of you, but I like my partners to feel like best friends. I want to feel able enough to go to them with anything and not feel like I’m being judged. If you have to question this, seriously re-evaluate. There might come a time when you are healthy for years and end up in a wheelchair down the road.

However, significant others are tricky too. You are going to hear questions like, “can you have children?” “is it contagious?”, or them re-word something nice with a bow but really mean “will I have to take care of you one day?” And sometimes you might get lucky. I recently dated a really great guy, who when I told him I had MS, he researched all about it later that night. When the next time I saw him, he knew so much about my condition, he felt really comfortable to talk to me about it. He read my blog; all of it. Some people are really compassionate and some people aren’t.

Bottom line is, it’s extremely difficult to tell the people you know you’re sick. It’s almost like making the disease real and come to life by everyone knowing. And sometimes, people may leave your life because of it. It’s an awful feeling. It’s one thing for someone to leave your life because you are a total asshole or doing something you can change about yourself, but it is another for someone to leave you because of something you can’t control.

There are always going to be issues down the line about telling someone your diagnosis. After my ex-boyfriend left me, it took a long time to trust someone again, but I eventually did. But it has made me a seriously greater person because of it. You are the ultimate kick ass fighter. I have a few friends that can’t piece themselves together after a break-up, drink and cry themselves into oblivion, and I have to wonder what they’d do if they had cancer. But you – you beautiful creature – you are a fighter. Everything you’ll do from now on will be more awesome. You’ll appreciate life more. You’ll appreciate the people in your life more. And you’ll know you’ll be able to conquer anything.

** I have been getting so many messages about me stopping my blog. Then I got one message, from a girl in New York, who told me she just had been diagnosed with cancer last month. She had been reading my blog to feel “as if she had a friend”. It broke my heart. Someone in my life once made a comment about my blog, about how he could never have time to manage one, let alone read it. It made me feel like shit, especially since my blog is about being sick. But I realize, I help people. I try to, at least. I have made really great friends because of my blog and connected them to other people in their situations. I am a strong, beautiful, intelligent woman. I work three jobs. I go to school part-time. Nothing in my life is more rewarding than speaking to all of you and knowing I might have helped at least one person because of my story.  And even though a lot of you have become totally immersed with my situation like it's Big and Carrie from Sex And the City (a few of you compared it to that - hilarious - I wish I had Carrie's shoe collection and Big is actually charming dreamboat) but I won't be talking about him.  Actually, I won't be talking about anyone I am romantically linked to, go on a date with or am interested in.  I mean, if I get married on Valentine's Day, I don't want my future husband to be like, "who the hell is Chunky Monkey?!"  Lately, I've lost "my fire" as a friend said.  Bottom line is, I don't want a relationship right now (I have work on myself first before I put "serious" energy into another person) but I want to enjoy company, I want to be romanced, I want to have fun on dates, I want to be cuddled with, I want to enjoy my new collection of lingerie, and I want to be smooched without all the hub-blub of something intense.  I want to be involved and have a little sweetness in my life without having to be COMPLETELY emotionally invested in something I know I can't put my 100% in at the moment.

The past year, I've been becoming closer with a lot of the people in my life and it's been a test for me.  I've always had a wall-up when it came to anyone close to me.  I've been so self-conscious about being so vulnerable, I forgot to enjoy life like I used to.  And because I've been so self-conscious, I've expected way too much from others to compensate for what I felt I lacked.  Like I told someone last night, I'm a Ferrari but I am acting like a Pinto.  I realize the old me wasn't the greatest person in the world, but that doesn't mean I have to completely change myself, which I thought I did.  I'm working on bringing the old Natalie back, even more awesome because this time around, I actually love myself, I love the people in my life and I love life.  Life is meant to be enjoyed and lived, not for everything to be so serious all of the time.  Thanks.

It's Like My Brain Is On Vacation

My life is full of awesome, kisses, hugs, high fives and excellence.


Click images to enlarge


Video chatting with my boo earlier this morning. I will wear red lipstick every day.


It's been a long time since my hair has been this long, and is currently reaching my shoulders. Now that my treatments are finished, I don't plan cutting my hair any time soon. So happy about this!

Also: I love going on dates. I love everything that comes before it and everything that happens after. I love getting pretty for a boy and that first reaction he gets when he first sees you all doll'ed up. I love that awkwardness during a date, when you really want to touch someone, and they really want to touch you, so you constantly find reasons to touch this person. I love being tickled. I love that high you get the following day. I love thinking of fun things to do. This sounds totally cheesy, but I really love cheese, too.

Relationships don't have to mean settling down.

Just find someone as wild as yourself to tear up life with.

I Have Left My Heart In So Many Places

I always think to myself when reading back on things I have written and said to people, that I am an idiot. Obviously though, I mean I am an idiot in the sense that in the grand scheme of things I know absolutely nothing. But, I also acknowledge that in being able to look back and recognize my growth, successes, and mistakes, it really spotlights that I am constantly evolving into a superior version of myself.

And I think that's really wonderful.


These shots I'm taking are kicking my ass. I take them before bed so I don't feel the side effects (and for any of you that actually know me, me and sleep are not friends). I woke up at 8 am, totally shivering, wearing a sweater, a hoodie, two pairs of socks, with the blanket over my head. Even though my apartment said it was 75 degrees, it felt 20. These flu-like symptoms are about as awesome as a booze-fueled fight with a boyfriend.


I'm a real ride or die chick. Doesn't take much to make me happy.

Two Thousand Twelve

NYE 2011

So, if by the time the bar closes and you feel like falling down, I'll carry you home.

Soon enough, we’ll all drink champagne and celebrate the New Year. However, it’s important to stop and reflect on the year that has gone by. It’s a time to remember both our successes and mistakes, our promises made and broken, the people we’ve loved and lost. Stop and remember the times we opened ourselves up to great adventures and possibilities, or the times we’ve closed ourselves down for fear of getting hurt because in all actuality, that is what new years is all about --- a second chance. We all have a second chance to forgive, to do better, to do more, to give more, to love more and learn from our mistakes. Stop worrying about what if and start embracing what could be.

So when that ball drops at midnight, say goodbye to another year that’s passed and be open to what could be for a new year. We all have times we wish we could rewind time and do it over again, say something different or avoid it altogether. That is what the New Year is for; we have the ability to show what we’ve learned and change.


That said, if these past 2 weeks are any indication what 2012 will be like, I'm going to have an amazing year.


And last night? Holding hands and ice skating?
Then cuddle and kiss my brains out?
One of my favorite dates ever.

Lloyd Dobler

Diane Court: I just can't have any social life right now.
Lloyd Dobler: Don't worry about it. We're just having coffee. We'll be anti-social.
Diane Court: Be friends?
Lloyd Dobler: Yeah. With potential.

Dear Single Female Readers:

Find a man. Not a boy, not a guy, and definitely not a dude. A man. A man who puts effort into you. A man who wants to show you off to the world and let everyone know how lucky he is to have you. A man who you never have to make excuses for. A man who will still think you are beautiful, sick, healthy, or during that time in the morning you are making your coffee and your hair is stuck to the side of your head. A man who puts his arm around you; who holds your hand. A man who is completely understanding and one who can be your best friend. A man who owns up to his mistakes, because admitting your mistakes is the sexiest thing in the universe. A man who will knock on your door at 2 am, just because he wanted to see you. A man who will do anything to have you.

Just because we are sick, or that we feel like damaged goods, or maybe because we don’t feel good enough, does not mean we should settle. All of these guys, these boys, are just a practice run. We learn from our mistakes, we challenge ourselves, and we learn so we’re the best package of a woman we can be for when the right one comes. Work on yourselves, better yourselves as a human being to have a healthy relationship. Yes, timing is everything, but so is your state of mind. If you think you’re damaged goods -- you are damaged goods. You will be that sick girl, undeserving of something healthy and awesome.

Never allow someone to be your priority while allowing yourself to be their option. Don't search for a man that will solve all your problems, he won't. Find one that won't let you face them alone. If he misses you, he'll call. If he cares, he'll show it. If not, he can't be worth your time because you're obviously not worth his. And please, don't base your relationship decisions off of the advice of people who don't have to live with the results (I have broken this way too many times!)



Love,
Natalie

ps: My birthday is 3 weeks away! Trying to plan a night with someone down Atlantic City.



And to those who are asking:
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(my Twitter is public, my Facebook is not!)

Question From A Reader

Natalie,
My boyfriend of almost 3 years has been diagnosed with early stages of MS. What can I do to make things easier for him. I stay up on the phone and we laugh and we go out and have fun and hes like my best friend, but what else can I do? I don’t know alot about it or how he feels unless he tells me but i dont want to bring it up with him all the time. and now his mindset is different, last night he said to me "life is all a memory. When we get off the phone now this conversation will just be another thing that’s happened" I dont want him to think like this it upsets me and of course being a male he refuses to confide his feelings in me. It’s very hard to get him to talk. ANYWAY can someone give me some advice on how to treat him? He’s going to start "avonex" soon.

This is a tough one. Even though I don’t exactly have the mindset of a man and could possibly help you about what his intentions are, I can do my best. But my advice is simple enough – keep doing what you are doing.

The worst thing you can do with someone diagnosed with MS is treat him or her differently. We already feel like a special case. Doctors treat us like a diagnosis. Others treat us with pity. The most important people in our lives should treat us with the same love and respect they had for us before we were diagnosed.

Us folk with MS tend to keep our guard up at all times. It is not you, or your relationship. It’s his relationship with his diagnosis. Us MS’ers treat time as something more precious than any other normal being. We aren’t exactly sure if we’ll be walking tomorrow, be able to hold our children when we are older, or see our loved ones turn gray. I wouldn’t be offended, or hurt, by his comment. He sounds like he is still working on the worst part of his diagnosis; acceptance.

If you feel the need to talk about it, then do so. But right now, he may be looking more for an ear (or shoulder), rather than someone reminding him of how crappy it is to be diagnosed and the endless possibility of problems that go along with it.

Dating and having MS sucks. We have more baggage than any other fish in the sea and it takes a very special person to accept us (and love us) for who we are. It's been four years for me and I still haven't found that special someone. Consider himself lucky to have you.

So what I can only advise you to do, besides be your awesome loving self of a girlfriend, is show him a great time. Don’t dwell on the past, what could be or what should be. Live life in the moment and never take it for granted. Being positive really rubs off on people.

A Sweet Release

What an intense month.

I've lost someone very close to me.


Life is too precious to wake up with regrets. So love the people who treat you right. Forget about the one's who don't. Believe things happen for a reason. If you get a second chance, grab it with both hands. Your karma, the universe, the cosmos; something is trying to change your life and give you a sign. If it changes your life, let it. I've learned the meaning of effort. I've learned the meaning of love and respect. I have learned that there is never ever anything to lose, but to gain. And I've learned how to welcome the good.

I never said life would be easy, I have just promised myself it would be worth it. And from here on out, I know I have a second chance at doing things right. You will never be able to move on if you let your past anchor you down. And never let the people who have hurt you win.

High & Dry

I loved him.



We lived together, but when I look back on it, it feels more like playing house. I felt needed and appreciated. There is no better feeling than feeling needed. I was only in my early twenties and I thought I knew the world by then. It was more than a partnership, more than a relationship and I was happy to put myself on a plate and offer all of myself to him. I didn’t care about getting flowers, or presents or anything like that. I felt like a princess because he gave me the ability love and trust someone more than I ever had in my life. In relationships, I don’t really ask for much. I have more fun with a tickle fight than going to a $40 show. His happiness was my happiness, and along the way, I lost myself. Before I knew it, his friends were my friends, my life was being planned according to his calendar and I followed like any overly loyal girlfriend would have. The only thing I asked for was to not break me. Give me the same respect I give you. Give me the same happiness in the effort I put towards you, into me.



So one night, I lay alone in the hospital after hearing the most devastating news – I was going to be a cripple. It was all right, I thought. I had him and he loved me enough to accept me for who I was. I was absolutely comforted knowing out of everyone in my life, he would be the first person to be at my side.



I never heard from him again. Sure, girls came in and out, using my bed while I was learning to walk again. The apartment was cleaned out before I came home a month later as if he were a ghost. Like he was a figment of my imagination.



I can describe all the cliché things that happen after following a break-up, especially one that cold. How your heart closes, how love is the enemy, and how cold you feel inside, enough to bring on a frost advisory.



No matter how many times I say I am grateful for the things that have happened to me over the last few years, that one incident literally broke me. But I’m a woman, and women need some emotional stuff in their life, right? So many boys came and go. I didn’t sleep with any of them. Sex became so incredibly sacred to me and it felt like I would be giving a piece of myself to this person. I went 4 years without sex. Now, I did kiss, I did flirt and date around. I needed the company. And as awful as it sounds, I needed to feel appreciated. It didn’t matter if I saw no future with the guy; I used them all to hear the things I wanted to hear. I used their hugs, their comfort, late nights and kisses. I literally flirted with disaster. My insides were the aftermath of a war, the destruction of being torn apart and the last thing I wanted was to be built back up again. I was a hollow shell unable to love anyone but myself.



Dear world, this is the most honest and open I have been to so many people at the same time. I have faith again. No matter how much I fight back those feelings I know are there, I can’t fight anymore. I am learning you cannot be happy without risking being completely open. And sometimes, just sometimes and not very often, someone comes along and brings that wall down. As exposed and vulnerable you may feel, realize it is okay to feel. It’s not healthy going down the road I took, especially for so long. Not everyone is out to hurt you. But I can’t lie and say it’s not the scariest feeling in the world. My self-destructive days are now over and it took me this long to realize it does more harm than good.



Broken and rebuilding; I know it will all be worth it.

A Second Chance

For the first time in 28 years, I am alive. Every breath I take is a reminder of how appreciative I should be. I am in control of my life, for the first time in 28 years. Any destructive lifestyle I may have lived is in the past. I want to feel pain, happiness, loss, love, and faith. I want to kiss. I want to love. I want to be a friend. I want to be inspired. I don't ever want to hold myself back. I want to live life with a love I have never felt before.



Friendship is true blue. Every friend is a mirror of yourself, a look into what kind of person you are. Friends are a mirror of your character, of what kind of person you want to be. Take a good look at whom you claim your loyalty to. They should inspire you; they should make you want to be a better person. Friends should encourage you to lead an amazing life, give you faith and a newfound hope. They are your safety net – no matter how high you feel like you are about to fall. Do you want to be a good person? Surround yourself with good people.



Relationships are a partnership. When you're in a relationship, even if nothing else in your life is right, you should feel like your whole world is complete. I want to appreciate and I want to be appreciated. Life is fucking fantastic, but even more fantastic when you have someone to share it with. Relationships should not take hard work; this should come naturally. Enough of jealousy and realize trust is enough; trust is the foundation of any relationship. Trust, faith, compromise and love with every single muscle you have in your body. Love is unselfish. Love is the ultimate act of knowing all about someone, and still wanting to be with them more than any other. Love trusts someone enough to tell them everything about you, including the things you might be ashamed of or even scared to tell them. Love has no games, no rules, and no time – only a face, a face of someone worth every ounce of effort left in you.







Life, you are on my radar now. I am ready. I want to live you to your fullest. I want to experience all that I have taken granted for. I will never complain about you again. My breathing is a gift. My life is my canvas. And what I decide to do with it should be a masterpiece.

The Key To Change Is To Let Go Of Fear

“For everything you have missed, you have gained something else, and for everything you gain, you lose something else.” -- Ralph Waldo Emerson

I’m staying the night at my parent’s house. Hearing them sleeping, feeling their comfort of having their daughter safe at home brings pleasure like eating a fresh baked cookie.
When I see them, I don’t just see parents, I see my lifeline and my strength in form. I would not be where I am today without them. When all was lost, when all was lonely, my parents were there. And I will return the favor for them. (My mother plans on writing a post for my blog, fyi!)

I don’t feel old – I feel matured. No longer “dating”, I am holding out for someone worth my time. It’s time to settle down and find someone worthy of what I have inside me. I have a lot to give. In easier words; a mature relationship. I no longer feel the need to fit in or mold myself to please others. People come and go, but the few I have are priceless. Friendship is no longer about competition, jealousy or drama. Revenge is no longer about getting someone “back”, but rather letting it go. It does not deserve the effort.

Love has a new feeling, a new definition. Love is absolutely beautiful. There is a world of endless possibility. There is no such thing as a leader, but a partnership. Not even the best scientist in the world could define that deep connection between two people. Seeing my parents is like Christmas morning. Hearing my best friend Monica on the phone always makes my day better.

I also don’t feel disabled. Having been in a wheelchair has given me patience, newfound happiness and a softer landing for being let down. When you are at your lowest of low points, there is no way to go but up. I know I have a disease that has no cure, but life is life and it doesn’t define who I am. Some of the strongest people I’ve had the pleasure to meet have disabilities. They are an amazing group of people – you all are.

Welcome To Your Life

“Something is different about you, Natalie,” my mother and father say almost on a daily basis.

I feel different, too. Almost like I woke up one morning and my view on everything had changed.
I’ve been planning my walk for the MS Society in May; handing out brochures, posters and awareness pins. So far, my walking group has reached over our goal of $300. Without my friends and family, I don’t think I would be where I am today, and I am honored to be walking with them.

Feeling the benefits of charity, I have also joined the Big Brothers and Sisters of America. Even though I haven’t been set up with my ‘little sister’ yet (I asked to be paired with a girl who is disabled), I’m excited to be making an impact on youth.

A huge check came in my name last month (I have a job on a hit television show), and I was able to pay off my debts. Instead of going out, buying a dozen pairs of high heels and having a shopping spree, I decided to pay off all my debts. I am happy to announce that I have absolutely no debt.

Watching my best friend Astrid falling for my very good friend Dave is having an affect on me. Why am I still single? I am patient. Not everyone out there is meant for you, but once in awhile, someone comes along and makes your day a little bit better. However, I need to work on myself. I have too much respect for myself to involve myself in any toxic relationships. My focus has been on nothing but school, charity, family and friends. For years, I’ve had problems with relationships. I felt as something was missing, but now I know what it was -- me. I needed to be happy with myself before I could become happy with anyone else.

I’m at the point right now where I am comfortable being with myself and I don’t need a relationship to validate that. After all of the bad dates, crazy boyfriends and not so wonderful friendships, I finally know what true love is -- and I have it within myself.

I feel content. I feel like I've found my purpose.


“There are great things in store for you in your future, Natalie. I feel like your life is just beginning,” my mother said with a smile.

So when I ask my parents, “what is so different about me”, their response is, “you’ve grown up.”


Please donate to our MSWalk group -- we need all of the support we can get.
Donate here!