My medical aid in their blessed wisdom has seen fit to refuse me the medication I need to prevent having further MS episodes, essentially because I am not sick enough. So in order to qualify for the medication I need to have another episode and get a little sicker. The logic, in my very humble opinion, sucks. This medication will, I am told, effectively help to prevent further attacks from happening as well as delay the physical deterioration associated with the disease. I dread the thought of having to land up debilitated and in a wheel chair in a few years time, dependent on the help of others. Accepting help is not my greatest suit and I struggle with it, being Miss Independence does have its downsides as well it appears
The conundrum for me is having to decide if I am having an episode or not and if I think I am, then taking my self off the clinic to get checked in and go onto meds. There are two questions that you may be wondering at this point, 1…what constitutes an episode and 2….Why is going into hospital such an issue you for me?
An MS episode is different from one person to another, thus far in my case it has started with one of my limb joints becoming painful and my head becoming dizzy. Not the kind of fall over, vertigo dizzy but the stoned, turn your head and your brain seems to follow a brief moment later dizzy. I find myself a little forgetful and I get incredibly tired. Doesn’t sound too bad does it, except that the pain in the joint lingers after the episode has passed and I am slowly gathering an entire collection of aches and pains.
As far as going into hospital is concerned, I am only too happy to go in and spend three or so days abdicating my responsibilities to the world while massive doses of cortisone are fed into my veins in an attempt to end the episode and dull the pain. Except in order to prove that this is an episode I am required to have an MRI and a lumbar puncture? Have you ever had either of these things? An MRI means lying absolutely still for a minimum of 45 minutes in what feels like a round coffin with drums beating to no particular rhythm. Thump, thump, thump, brrrrrrrrrrr, thump……clank, clank, thump, clank, thump, thump and on and on it goes. The only way to deal with it, for me, is to attempt, in completely inappropriate circumstances, meditation, as much as medication would be preferable, none has ever been offered! Of course, if you twitch a little too much, the whole thing is a washout and they have to start all over again…………moral of the story don’t twitch and practice a little meditation in a noisy environment as a back up plan.
As far as a lumbar puncture, the only advice I can give you here is to ensure you have a very empty bladder before they start sticking needles in your spine, and if possible establish a good rapport with the doctor who is going to be doing the procedure. It is something you want done as gently as possible and then of course you have ten hours on your back to look forward to with no popping out of bed to go to the loo. Did I mention the whopping great headache that follows? There is that to look forward to but staying in bed on your back will mitigate the severity. Now do you understand why going into hospital at the drop of a hat isn’t a prospect that I jump at?
The other side of this swiftly rotating penny is that unless you go into hospital and subject yourself to the tests you cannot prove to the medical aid that you have the lesions on your brain caused by the disease in the first place, that will get you the medication that they should have given you a couple of months, earlier that would have prevented this attack from happening.
I rest my case
On Thursday 20th February 2014 at around 11.15am my world fell apart.
I went from being a strong independent self-starter to OMG how am I going to cope with this and feeling like an invalid in the space of a few words. All it took was the doctor to say “I’m afraid I have some bad news”. You hear them in movies, your hear stories from friends who hear them, but when you actually hear them yourself the world seems to stop spinning on its axis for a very brief moment of eternity. It is almost comical because the world and the people in it do not change but you do, instantly.
I had been feeling dizzy and light headed for a couple of days. I have high blood pressure but when it is running towards the high side I usually feel nauseous and sickly and this wasn’t how this felt. I felt stoned. And not in a good way. That revolting feeling when you turn your head and your brain only follows a second later. That’s how was was feeling and it wasn’t cool. I was trying to run my business and take care of my “massive” empire whilst feeling like an out of control drug addict. I went to see my GP. She seemed to think middle ear infection and said I needed to see an ENT or a Specialist Physician. I have a friend with a brain tumour so I, in my usual casual fashion asked if that is what we were looking for. She never answered.
The fastest way to get into the healthcare system is to go via an emergency room, so the next day that is exactly what I did. In fact I grabbed my mum and said let’s pop down to the hospital quickly. I wasn’t expecting to end up being booked in overnight after an MRI and a myriad of blood tests.
I think I knew then that whatever was going on was going to be serious, this wasn’t going to be a simple middle ear infection…
Of course, the toughest thing you can go through is the wait for results and the night was very long, and very fraught with all manner of anxieties and the doctor only showed up at around 11am the following day. Maybe if he hadn’t showed up at all the following days would have been a little less bleak but one cannot really shoot the messenger in this day and age if one doesn’t like what he has to say “I’m afraid I have some bad news, you have lesions on your brain that could be one of three things. You need to see a neuro ”
I was very casual and incredibly cavalier in my response to him. I said when you speak to the neuro please tell him I will come in on Monday to see him. I had my first ever, first ever solo, sculpture exhibition opening that Sunday afternoon and nothing was going to stand in my way of being there. Nothing! The Neuro had other ideas and I was instructed to present myself immediately, the next hospital was waiting for my arrival. So I drove myself home and then got mum to take me to the next clinic, at least this one was a little closer to home and this doctor I had already met before.
I was dispatched for a lumbar puncture on arrival and then got to spend the next 14 hours either on my stomach or on my back so as to minimize headache that was going to follow. The doctors were looking for MS (Multiple Sclerosis) and they found it.
The MRI had confirmed 3 lesions on my brain that hadn’t been there a few years previously and with the results of the fluid from the lumbar puncture and a couple more blood tests it was confirmed. I have been diagnosed with MS.
The news was a shock that I have only just begun to get over. It could have been worse, it could have been a brain tumor. It could have been worse, I could not have had a medical aid. It could have been worse, I could have had to face this alone, without the incredible support of my mother, family and friends.
This journey is just beginning… Now the medical aid needs to be petitioned to pay for the huge costs of medication. I have to work towards changing my life, reducing the hours I work, changing my diet, reducing the stress in my daily existence, no mean feat in this country. These things are a challenge but they are doable, and I intend to try because not trying means giving in to this really ugly disease and letting it take control of my life instead of me taking control of it, one day at a time.
I have spent the past week grieving for the future that might have been but the truth is I actually have no idea what the future might have been anyway. It isn’t like I intended to climb Everest before this diagnosis but it does mean that I intend taking that hot air balloon ride rather sooner than later, that I might not ever hike the Otter Trail but I will enjoy the walks in Delta Park with my faithful Amiga, even more now that I used to and that although that slice of cake looks awesomely delicious I may just enjoy that fresh plum a little more.
From here on it is about living life, loving life and trying to be a better person if only because I can be
This is the beginning of my journey and you are welcome to come along for the ride……