Once upon a time There lived a young woman who’s heart was growing on the outside You may have heard similar stories of babies born like this But this young lady’s story was unique You see, she was born with her heart perfectly intact and enclosed inside her body But when she was 7 years old, her dad left her and her mom for good She cried herself to sleep Every night for a month She missed him terribly One morning she woke up and felt a lump under her pjs It felt like it was moving! She ran to her moms room Her mom jumped out of bed and ran to her side She saw the lump moving with her own eye ..read more

I guess this has become like a journal for me I write here and I don’t care who reads it Or who doesn’t It’s cathartic In ways that I can’t even express So Dear Diary, I had a bad day Maybe a bad few days After increasing my dose with the gabapentin It had a really sedating effect on me I take a lot of other meds so it seems with the increase I was just being knocked out So I’m back on the one pill Still in pain So I’m not sure where that leaves me I called the clinic to inquire about a lesser dose So we’ll see I also had my monthly labwork It’s for both Lemtrada And for my low platelets The n ..read more

MS symptoms are weird and scary and often come at the worst times My initial symptom was optic neuritis which is an inflamed optic nerve and caused pain and blurriness Along the road I guess I’ve been fortunate that my mobility hasn’t really been affected I don’t know if sciatic pain is associated with MS but that’s affected my mobility the most Fatigue has been a constant It’s not your regular tired after a long day at work It’s more like a body draining exhaustion Like you ran a really long marathon But all you did was shower And no amount of rest makes you feel less tired I get a lot of hea ..read more

I’m sick of my body being so broken The nurse just left I’m laying down with an ice pack on my hand She got the vein in my hand but push inreally deep The veins were rolling The blood was oozing out so slowly I could feel myself becoming nauseous I felt weaker as she took an extra vial bc she wasn’t sure there had been enough blood before I don’t get it It’s not a lot blood But I feel drained Completely I’ve been doing this for so long I hate how it’s not easier My hand hurts No The inside of my hand hurts The vein That I shouldn’t be able to feel I hate how wrong that feels I hate that I felt ..read more

I’ve been off of work for two years On long term disability Every day the probability of returning to my old job felt further away Yesterday I received an email from my employer Officially terminating my employment It hit me hard You might think it’s no big deal since I’ve been off work for so long You’d be wrong I felt like I couldn’t breathe I reread the email so many times The words blended together Floating on the screen They didn’t make sense anymore I worked there for 6 years I’ve been working in this field for over 12 years Now it’s over Officially I guess I’m no longer a youth worker I ..read more

I don’t know why… So I’d like to share with you a little about my nonna Concetta She wore black for like 50 years after my grandfather passed away She used to have really long hair I remember being a kid and watching her in wonderment comb it and then put in a bun She never wore it down so I felt like I had gotten a peak behind the wall She took care of me during the school week My cousins and I would go home for lunch and she’d be always be ready for us It’s funny to me now But back then she never missed a lunch She always sat with us She didn’t eat I don’t know when she ate her lunch But dur ..read more

Its not the same world that I wake up to everyday Some days I wake up And the world is a cold scary place People use you and forget you Even the ones that are supposed to love you Sometimes I wake up And it’s a stressful world Filled with risks And people I don’t trust Sometimes I wake up And it’s a lonely world With no one around There is one world I like waking up to most of all On those days I wake up And it’s a beautiful world Filled with kind people And compassion The colours around me are more vivid The music I hear is perfect The art I create comes easily So I go to sleep Every night No ..read more

I don’t know if humans are really equipped to face their own mortality It’s just such a foreign concept It’s the opposite of what we know We breathe without thinking It’s automatic To think of our own deaths Seems just wrong With MS I don’t really have to think about it It’s a lot of things But it’s not fatal When I was diagnosed with ITP (rare blood disorder) this past summer It seemed surreal I could die if I got cut If I fell The slightest thing would mean I could bleed to death I remember when I was still unsure what was going on Feeling cert ..read more

Every time I scan my body for a bruise or petechiae For the rest of my life I’ll revert back to this past summer And the disdain I felt for my body For betraying me Yet again I thought we’d come to an agreement after I lost my fucking mind in January 2019 I thought we were cool Ready to coexist Always together Anxiety Panic Depression MS All of it We were going to get through it all But those damn blood bruises A warning sign that my body wasn’t holding up its end of the bargain Now even though I’m in some sort of remission I scan my ..read more