Let’s Talk About What We Don’t Want to Talk About

Hi there, stranger!  Since it’s been awhile, I’ve been wanting to give you this grand post — you deserve a grand post after all!  — but the truth is I am a horrible blogger.  I am, and I’m sorry.  However, there’s good reason — I’ve been busy . . . enjoying myself!  I know!  Me, actually maybe, just maybe having fun . . . ? . . . !  I’m finding new activities and groups and friends with common interests and getting things done.  I’m kinda excited about it too . . . and some days, I think I even want to call it “happiness” . . .  See, all of these things are rare for me, mainly “happiness” which I was beginning to think didn’t exist anymore.  I admit, I’ve cooped myself up in my apartment for the past couple years while our separation and never-ending divorce process took place.  Never-ending because it’s been what? two years?  Insane.  So we’ve had this whole process drag on and on and had to sign new papers and had to meet each other again and he’s done more and more to ensure that we will no longer be together.   . . . Let me pause here because to be honest with you, I hate thinking about it.  The moment I think about all of this, I go right back to that bad place I was in.  Sometimes, okay often — I was depressed, really depressed.  I still don’t understand why things happen the way they happen in the world.  And I know hindsight is key, but it’s hard.  I have OCD — I like explanations, immediate answers, descriptive details, organization.  My brain doesn’t function  if I don’t have that or if things change suddenly . . . which is why it has been difficult coming to the realization that I’m not going to get answers — at least not now, right upfront.

Okay.  That was a heavy introduction.  I digress.  I told you I was a horrible blogger.  BUT!  The whole point was that I’m beginning to see a new me — a calmer, more methodical, even . . . possibly happy at times, me.  And that’s good.

On that note, the real reason I’m writing is because one,  I’m in a better place and no longer deleting sentences that are from a bad place . . . and two, I want to use this post as my soapbox.  I do apologize this is what you’ve waited for . . . but it just has to be done.  That’s why I’m pullin’ up my soapbox now, steppin’ up, and it is here I want to address a major issue in America: healthcare.

Let’s go back to winter, December to be exact.  That’s when I wrote my post Disappear where I told you about that strange itch that couldn’t be scratched.  I also went into a deep back and forth discussion with you (let’s be honest — with myself) about Copaxone, the medication that was suggested for my multiple sclerosis.  At that point, I was unsure if I should take medicine, if I should take Copaxone.  Here’s my update.

Shortly after the itching — which lasted for over a month — I had the start of optic neuritis (loss of sight in one eye) again.  Luckily, I was able to notice similar symptoms before I loss all sight a second time, and I called my neurologist.  His nurse practitioner recommended me go to the eye doctor as soon as possible to confirm the optic neuritis diagnosis and once that happened, get IV steroid injections immediately to stop the progression.  Sure enough, optic neuritis was diagnosed so we rushed to the hospital where I had steroids treatments over the next three days.

No matter the age, a lollipop helps.  (In truth though, lollipops decrease the strong taste of metal when you have IV steroids.)

Not only was it December, but a freezing cold December with some of the lowest temperatures I can remember in a long time, and it snowed so much I was worried I wouldn’t be able to make it to the hospital.  All of that didn’t help my neuritis either.  Even with the treatments, it took longer for my sight to improve than before.  In fact, to this day, my vision in the left eye is still not where it was before.  It is slightly blurry and shaded with dark spots in some places. This is sad because I remember awhile ago when the doctor told me that at some point, my brain would not be able to recoup the death of cells; it would not be able to order other parts of my brain to pick up the slack.  At some point, there would be too much damage to correct.  So that’s — on a small scale — where I’m at unfortunately.

Alright.  Honesty again.  The reason why I believe I had optic neuritist a second time.  Warning: It is so incredibly stupid . . . and remember when I told you I was working on being more calm?  Well, here’s another reason why.  My friend has wanted to adopt a cat for awhile and invited me to go with him in finding his new pet.  I’ll admit I’ve never been a cat lover, or better yet I adore all cats — the scrappy ones you see in streets and neighborhoods, my friends’ cats,  poor sad-faced ones needing homes in pet stores — I love them all and want to hug them and kiss them and pet them and bring them home.  However, it’s that last part about bringing them home that has always stopped me.  I don’t actually want to own a cat.  I don’t like that they have “needles on their feet” as a friend of mine says.  I don’t like that they are so independent and think I am on earth to serve them.  And I don’t like litter boxes, gross, I hate litter boxes.  I prefer dogs and more than that, I’ve prefer having my one love and it being her and me against the world!

My true love, my life, my P

I wanted to be an encouraging good friend though so I agreed to go look at kitties.  I knew it would be hard to see animals in need that I could help — I mean, I am the person after all that runs into traffic to save a wild bird that has an injured wing, one that has built too many butterfly homes for hurt monarchs I find, and the person that will go through the hardest cry of my life (ugly spit-down-nose wails) while watching Life of Pi because the animated animals were eating one another . . . but I am an adult now!  I could walk into a pet store, look at the animals, and not be so affected . . .
So we went . . . and found three baby brother Balinese kittens.

Tybalt, Puck, and Lysander

My friend was stoked — this is a breed he didn’t think he’d find that he loves.  His family had Siamese cats before and this is the Siamese’s long-haired cousin.  He gets into this pet store cage-thing and plays with the kittens and hollers for me to come in.  Meanwhile, I held back, saying I didn’t want my allergies to act up (which is true — My eyes swell shut and hives cover my body  every single time I’m near a cat), but the truth was I also didn’t want to get involved because I couldn’t handle it.  In the end, those damn fur balls were too f’n cute so I climbed in the daggon cage-thing and had kittens covering me and they were covering him and we were laughing and they were mewing and he says, “I think I’m going to get them!  I’m going to get more than one!” and I’m excited because they will all have a home . . . and it was beautiful, truly.  A beautiful moment.  We get out of the cage-thing, we gasp in even more happiness because we realize it is true — Siamese and Balinese are hypoallergenic because I did not sneeze or itch once (seriously, amazing — that’s never ever happened to me around any cat)!  Again, beautiful moment.  He goes to walk up to the woman that runs the organization (Adopt Rescue Cats, a wonderful organization by the way with some of the most amazing people I’ve ever met) and says he will take . . . two.  Two?!  How on earth did we go from happy-tears-in-eyes, taking them all to this?!  One left?!  I try my hardest to not show my crazy-person side coming out and convince him to take all brothers but he remains firm, saying two is already more than he planned and signs the papers, taking two (Tybalt and Puck) and leaving one (Lysander).
To make a long story short, I cried . . . and cried . . . and cried for days thinking about the little baby kitten left behind without his brothers.  I couldn’t stop crying.  I imagined him being adopted by someone else that wasn’t me when I knew daggon well I would provide the best home for him.  That made me cry more, so hard I couldn’t breathe and was doing that gasp-sob thing.  I didn’t want a cat, Paris didn’t want a cat, but I couldn’t leave that few-month-old kitten there by himself either.  It broke my heart in a jillion pieces.  It didn’t help that at this time I was already sad.  I was going through the divorce still and feeling rejected and alone which made me think everything I was feeling, the little kitten felt too . . . and . . . well . . . I couldn’t take it.  I adopted a cat.

Little Lysander
Good news: He is unlike most cats.  He loves cuddles and wants to be next to me all the time!
While Paris would definitely be happier with it being just her and me, he is smitten with her.

End of the story is even though I adopted him, I had worked myself up so much that I had another MS attack.  *Grumbling and eyes cut to the side*

Overall though, this second bout of optic neuritis reminded me of a promise I made to others and myself: If I had another serious attack, I would go on medication.  I talked to someone at work (same guy that says cats have “needles on their feet”) who has gone through other health problems, and he said my last post (Disappear) reminded him of what he went through when he first picked a treatment.  He said he went back and forth, which accomplished nothing.  He learned it is better to just pick a plan and go.  He said, “Don’t put yourself through all of that stress.  Don’t put yourself through all of that second-guessing.  That leads down a bad path — If one thing happens, you will blame it on the mediation you chose and constantly wonder what life could have been like on the other medication.  Do not do that to yourself.  Just choose the best and most reliable one, stick to one, and if you hate it — change it, simple as that.”  His advice was exactly what I needed to hear so I took it and finally made the decision to go on Copaxone.

I got more bloodwork and tests done so that I could get the meds and immediately drug reps started calling me.  In fact, there’s this main company called Shared Solutions that has Copaxone and get this — they even offer financial help.  I was interested in knowing exactly how much my medicine cost so I called my insurance company.  I’ve heard horror stories of costly medicines so I’m thinking maybe $50, $100, or something like that.  No, hell no.  Not even close.  As of today, my medication costs $5,471.87.  Per month.  Yep, you read that right.  Now this is before insurance.  With insurance coverage, it will costs me $1,094.  Monthly.

I’ve been on the phone with insurance and medicine financial aid companies I cannot tell you how many hours and how many days.  There is some hope (which I’ll explain later), but still: A medicine that costs almost $5,500 a month before insurance?!  And with insurance almost $1,100?!

So here’s my question: What the hell is wrong with America?
I said “question.”  Scratch that.  Here’s my questions: What the hell is wrong with healthcare coverage?  With drug companies?  I understand medication cannot be free (and maybe I don’t even understand this but have accepted it) but this just sends me down a rapid spiral — How is it right or correct or even to be expected that people who need medication to beat their illnesses or diseases, need it to live should be denied medication because the price is so steep?  And my medication story is minor in a pool of other horror stories I’ve heard.  So why should people of top statuses be able to live and have better health because they can afford medication . . . while low-class and middle-class people suffer?  Who makes these decisions?  Who finger-points which people “survive,” which benefit?  Who says those who are teachers, construction workers, auto mechanics, nurses, farmers, and more — who says those people do not deserve to be helped or cured?  That those people do not deserve to get medication they need for an affordable price?  And will there ever be such a thing as “affordable” medicine?  I have so many questions here; I’m just getting started.  However, the point is this is f’n crazy.  Insane really that drug and insurance companies wait like hungry hounds to prey on those with health conditions that need help.  These poor people allow drug and healthcare companies to prosper because they just don’t have another damn option.  Oh, and the help these companies even give?  A small amount in the scheme of things because the cost of medicine is too high in this country.  To think that someone out there is paying $5,500 for Copaxone to simply decrease MS progression — not even cure the disease — is both infuriating and heartbreaking.  Our country shouldn’t prey on the needy and yet, I feel that’s exactly what it does.  When will America truly match its slogan and “be great”?

For more information on the disease-modifying treatments discussed, visit the company’s website:

For more information on other disease-modifying treatments, see the full list:
National Multiple Sclerosis Society.

Author: L

Hi there! I am the impulsive do-er, the jumper, the one tugging to move past comfort zones to embrace a life of sheer surprise. I am a writer -- a pursuer of stories -- because I believe in the destination over the journey. I am a chaser of sunrises and sunsets and cherisher of the moments between. I have an overwhelming curiosity, an insatiable desire travel, and an obsessive yearn to turn dreams into realities. For all of these reasons, the word that best summarizes who I am is "seeker" -- I am forever a seeker.

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