Two Years of Copaxone Daily Injections and A Promise to My Inner Kid | SMart Choice Lifestyle

A bunch of orchids were lined up next to the window, while daylight was filling the room up. I had been waiting for this moment for almost 10 months now, and it was finally here! As I was sitting on the armchair in the neurologist’s office, the MS nurse was giving me basic training for starting Copaxone, a daily injectable drug for Multiple Sclerosis, aiming to slow down the disease progression and reduce the number of possible relapses that could in time cause disability.

I decided to start with my stomach area, to get used to the burn that I so much read about before. The nurse was the one who gave me my first dose that day. As she pressed the auto injector against my skin, I could feel my inner kid wanting me to run away, to stop this and get back to normal. There was no turning back. I was injecting my body with a new substance that promised to help me live well, but still my mind was in fear.

I now know that in that moment I got even more stuck in the “what if…?” scenario that started after the diagnosis.

At the press of a button, the auto injector fired inside my body and after a few seconds, my skin truly felt ON FIRE, as being stung by a bee. The excitement of that all being so new helped me feel like I got over what was the worst part. I felt pride for getting over my fear of needles and, heck! Realizing that I in fact did not have ANY needle phobia whatsoever. My panic was due to the negative emotions associated with having an injection.

And so, little by little, injection by injection, two years passed by. I religiously did each and every one of them, rotating seven areas across my body. Little did I know that with each one, my mind was pinning me down into anxiety. You would expect that after all that I said before and after getting used to the experience, my angst should have lessened, right? That’s what I thought too!

Fast forward to today. I did the 728th injection in my right arm. Special occasion, "special moments": as I pressed the button, the needle seemed to get stuck, but then resumed to injecting veeeeery slowly. It usually takes 10 seconds from start to finish and now it was like it was walking through a swamp. Either way, it was all ok. It all gets ok AFTER the injection. The anxiety comes BEFORE the whole deal.

Rationally, there’s nothing to fear: a 1.2 cm needle, thinner than a 0.5 mechanical pencil tip, no pain when the needle pierces the skin, only the afterwards bee-sting sensation, that usually lasts 5-10 minutes, depending on the day. But my mind has other ideas: it thinks that something devastating is going to happen to me, that I might get a terrible heart attack if I inject in a vein (note: there is a thing called IPIR, meaning you COULD get a heart-attack-feeling-sensation, lasting no more than 20-30 minutes, but nothing lethal!) and maaany, maaaany more things like that.

Unsolved anxiety does “cute” things like these to susceptible people. The brain is used to respond to an immediate threat, but in my case there is no such thing. There’s only the unpredictability of the illness itself and the feeling that I HAVE to live my life QUICKLY, before Multiple Sclerosis strikes again. All that internal turmoil topped with a daily injection that acts like a constant reminder, have me overflowing with anxiety and nervousness that have me living a rollercoaster life.

Effects of this “darling” situation? Hmmm, let me limit it to just three, the most relevant ones to my current lifestyle: emotional eating (trumps all the healthy choices I want to make on a daily basis), feeling overwhelmed by too many creative choices I want to pursue, although I love all my ideas dearly (one of them is SMart Choice Lifestyle itself, victim of my procrastination and emotional ups and downs - I’ve been neglecting it for 2-3 weeks now), losing self-confidence because I am too afraid of that tiny needle and for not ACTING upon all the plans I’ve strategized for the past three years since being diagnosed.

HERE'S TO NEW BEGINNINGS!

Being aware of all this gives way to a new start. No matter what life throws at me, I’ve been given a second chance that not many people get.

I promise my inner kid not to fail her again, for as long as I live! I’ll be present for her fears, loves and wants and not treat her with self-doubt, no matter how fearful she might get.

Copaxone or no Copaxone, I’ll heal this anxiety and resume living my life. The SMart Creative way… by the way ;) Keep you posted!

Until next time, have a wonderful day!

Denisa

Multiple Sclerosis Diagnosis and Treatment Options - My Story in Romania

So I inject myself everyday. I’ve been doing this for almost a year now. Lots of things have changed. Lots of other things made me angry. Lots of which I’m going to write about today.

Multiple sclerosis has no cure. Instead it has many treatment options: injectable, infusions via i.v., oral and… no medicine treatment at all, just diet, exercise and rest. There are choices for every shape and size, there’s no one fits them all kind of approach. At least worldwide. Romania only has access to infusable (Tysabri) and injectable ones.

Neurologists recommend starting treatment as soon as one gets diagnosed with multiple sclerosis. The sooner you start, the most efficient the treatment will be at slowing down and delaying disease progression. That’s a thing we all strive for, especially when we get diagnosed between ages 20-40, when our life is just starting.

Before I get into the daily details of what diagnosis and treatment with Copaxone were like for me, I must point out a thing that has been bothering me way before all this rollercoaster started. As I was suspected to have multiple sclerosis, a treatment plan was indicated. But the odds seemed to be against all the people who desperately wanted to get that treatment to delay the disease from progression.

In Romania, the process of getting to treatment is a somewhat long one. You show up at one of the neurology clinics that are qualified to register pacients in the what is called The National MS Programme. Let me briefly explain.

The doctor makes all the tests needed for the diagnosis (MRI’s, lumbar puncture, visual evoked potentials, blood work, neurology consult), it turns out that you have MS or CIS (clinically isolated syndrome).

The file is then sent to the Comitee that accepts or denies your treatment request, and you are either called back to start treatment or are put on a long waiting list, because of insufficient funding or some medical reason like higher EDSS score (> or = to 8), or noncompliance to eligibility conditions.

Many people accuse the medical system of being indiferent and “murderous”, as the ones who don’t immediately get treatment and are put to wait, having to face serious dissabilities as their disease progresses one way or another.

These are young people who have just started their career, families or are just not willing to submit to what they fear is going to be a faster road to paralysis. They are scared and angry and just wanting to continue living and be an active contributor to society for as long as they can.

Of course, there are also cases of people who turned down starting treatment alltogether for fear of side effects. There are people who had been on treatment for a year or two and have decided to let it go, as it did them more harm than good, in terms of quality of life.

From my personal experience, I must admit that I have been incredibly lucky. Corruption can be high in my country. Because of it I was accused of paying my way into getting Copaxone, although I can give you my word that could never happen, as I’m totally against bribing doctors for the services they’re already payed to provide.

My diagnosis story goes like this:

>> had optic neuritis

>> got scared and made an appointment at a private clinic to get tested by an ophtalmologist right away

>> went there the second day, the doctor sent me to do a visual field test and a neurology exam, as my sight was in perfect shape, except for an inflammation of the optic nerve

>> went and had both tests, visual field came out half black (as my sight was partially obstructed) and the neurologist sent me to urgently have a 3-5 day corticosteroid infusion, as to - and I quote - “be able to keep both your eyes [...] you only have two of them, it’s your choice!”

>> told me I might have multiple sclerosis, but the thing we must deal with now is treating the optical neuritis and then we’ll see

>> went home, as I needed to breathe and get my thoughts together (I was basically scared shitless)

>> the second day, after anger and crying, I got myself up and went to the Neurology Institute I was initially sent to, got hospitalized and that very evening I had my first Solumedrol infusion >> did an MRI the next day >> a visual evoked potentials test the following day and got my diagnosis later in the afternoon >> anger, fear, crying, anger, courage and determination, more fear, more crying, a kind of acceptance >> 2 more days of Solumedrol >> my eye got better and I was excited to finally get home

>> got home, took a shower and then sat in silence for some time >> started to research my new enemy >> in a week’s time I found out all about the proceedure to get the treatment, I took my life in my own hands, called NGO’s, the MS Association in Bucharest, and finally got an appointment to the Neurology Clinic that was going to be registering me for treatment

>> another neurologist, another consultation, more blood tests to do, to rule out other causes for my 12-13 brain lesions, sent home and to come back with the results >> came back and was scheduled for a lumbar puncture 2 months later

>> did the lumbar puncture, stayed 2 hours laying flat and sipping water from a straw (possibly drank 2 liters in the process) >> bathroom brake, no headache as I was fearing >> the night passed and I went home

>> recovered from the back sting

>> a few weeks passed and I was called to the hospital to talk about treatment >> was offered a clinical study opportunity with Rebif >> got scared, as I intuitively knew I was going to refuse it, because of all the nasty side effects (I was given no prior treatment talk, no indications, just this opportunity) >> with my heart as little as a mouse, I pulled myself together and said no to it >> asked my doctor if that’s ok, and what should I do next >> the answer was that as it was my decision, they could not make me take the Rebif, but that I had to wait untill the next year to send my file to the Comittee and see if I can get a place with Copaxone, as I was too scared of the side effects interferons have: flu-like symptoms, depression, increased cancer risk, etc.

>> went home, told my family all about it, spent Christmas and New Years and it was “next year”

>> was called once more to the hospital to officially sign my treatment request >> all I had to do was wait

>> went and did some new blood tests and an MRI to know where I standed before the eventual treatment started

>> a few months passed and I received a call from the hospital, telling me that I got accepted and that I must come to start the treatment as soon as possible

>> went in, did my first bee hive sting, pardon me, my first Copaxone shot, 8 months after my initial diagnosis >> I was so scared and so grateful at the same time, as many people don’t have the same opportunity

>> a month later, SMart Choice was created, as a way to raise awareness about Romanian MSers

>> a few months onwards, the Romanian version was created - SMart Choice.RO - with big goals in mind

>> in the meantime I got accused by an anonymous reader that I was a cheat, and that I didn’t deserve the treatment as I got in front of all others that have been waiting it for years >> got very angry, wrote a response, got even more upset at the following conversation, I kept getting accused of paying my way into treatment and of not being aware of all the trouble Romanian MSers go through to get treatment

>> since then, I’ve known two MSers who have given up their treatment, I saw 2-3 people who received their first box of Copaxone at the hospital, all that in the context of waiting lists

>> I will not point fingers or try to get back at people who accused me, as I know from personal experience how much fear, frustration ad sadness multiple sclerosis can do to one’s life and emotions >> I will just keep doing what I think is right, one step at a time and in my own way, trying to raise awareness this year, and do all the things that I consider necessary for people who need treatment to be able to get it >> that plus advice, being there with all the help I can give without the serums themselves.

All the test I did, from begining to the end, were mostly payed with my own money, and some  covered by the health insurance I’m taxed for monthly (Copaxone included).

So that is my story so far. Today I injected for the 350 something times, so almost a year has passed since the first dose.

To sum up all the experience I had with Copaxone I’ll just say this: bee hive stings >> hives and swelling on skin, tickling like crazy >> urge to scratch >> did not do it >> hurt when injecting >> headaches >> anxiety (of injecting and caused by the serum itself) >> blood >> anxiety >> wanting to quit, to scared of the consequences >> kept at it >> kept at it >> kept at it…

...And today I began writing this article for you. Sharing my story and possibly helping you better understand what is like to be diagnosed, live with the diagnosis and taking treatment daily.

Sincerely,

Alexandra