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.

Vlogs Available

All previous vlogs published are now available to view.

YouTube Channel

*I will be updating this blog on a very frequent basis

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.

Happy Thanksgiving!

Our Ukrainian feast I helped cook for Thanksgiving.

Happy Thanksgiving readers!

New apartment, hospital job, 36.5 GPA.  No school until next year.

This is stability.

Readers, you've been with me for 3 years so you know how much it means to me to finally have become the woman I've always wanted to be.

Will be updating more often!

Got My Dream Job

Shoulda Coulda

So... I had the opportunity to get to know someone.  I went into it just going to hang-out with someone, no expectations, no nothing.  He was handsome, charming, and we had a lot in common.  We could talk about everything from life philosophy to something trivial as movies.  It was the definition of compatibility -- 99% to be exact.

It was very apparent from the first date we may have gotten a little too excited.  However, I knew I had to tell him I had MS.  I didn't want him to waste his time if he had a problem with my diagnosis.  When it comes to relationships, dating, involvements - whatever - I always like to take my time.

Unfortunately, with extremely bad timing:  the hurricane floods my basement, I lost my job, I was in a bike accident which left me in the hospital.  I'm also trying to get a job at the hospital, looking for a new place to live and studying for exams... everything was very overwhelming, considering my life is usually calm.  I had felt as if I just unloaded giant baggage.  I wanted to talk to him and say:  hey, can we cool it down until I feel better, my exams are over and life isn't so messy?  It didn't come out that way.  The words I wanted to say were definitely not the words that came out.  Meanwhile, my brain is scattered, and all I want to say is, just relax and get to know me.

I lost a very lovely person with potential to extremely bad timing -- two people who got in over our heads excited about the prospects, and not the present.


Needless to say, I've never been in this kind of situation before.