Fighting for Fingolimod (Gilenya)

Having MS and being needle phobic is not a good mix. I’m not sure where my hatred of needles came from but its big, huge, I can NOT do needles. It’s not about the pain as most nurses seem to think, I know its only going to be a ‘small scratch’ which you can’t really feel and doesn’t actually hurt. What I don’t like is actually having something inside my veins, I can’t even cope with the thought of a needle breaking the skin and being inside me, bleugh. [Even typing this is making me a little queazy. Seriously, I feel a bit sick now... deep breaths...]

For the last couple of years my neurologists have been trying to get me onto medication to help manage my MS. As theres no cure they like to give you medication to try to reduce the amount and severity of relapses which sounds great, especially as mine is quite active so initially I was on board, I’d love some drugs, thank you. Then they tell you what kind of drugs they are, not a little pill I can pop each day, nothing that simple but varying kinds of drug options all including needles. I could choose to have drugs once a month via IV drip at hospital or inject MYSELF drugs everyday or three times a week. Seriously, inject myself??! How is a needle phobic person ever supposed to do this?! So initially I said no to these options as how was I ever supposed to make injecting myself part of my everyday routine? I remained very firm in my decision until I had another relapse. It was only when I was at rock bottom, in pain, throwing up, that I found myself seriously considering injecting myself as I hadn’t really been left with any other option, I would literally do anything to reduce the chance of this happening again. 

My neurologist was obviously very pleased that I’d come round and was willing to try the three-weekly injections but unfortunately this little chapter of my life was very short lived. What they don’t tell you is that the injections are going to be worse than any other injections you’ve ever had, that they will be more painful than you could ever imagine them to be, that they will leave you bruised and in pain for a considerable amount of time after the needle has been taken out. Oh and that the one main side effect is ‘flu-like symptoms’. Basically the whole time you are on this drug you will feel like you’ve got the flu. At least if you’ve actually got the flu you can take some time off work, try going to work every day for six months with flu. I’m sure some people do get on alright with this drug, I am well aware that I’m a bit of a wuss but I just couldn’t cope on it. I think the last straw, the day I decided I was giving up was when one of the needles got stuck in my leg. Bleugh. 

So I was back to battling the MS on my own, no help. Or so I thought. Earlier this year NICE (British medical people) finally agreed the use of a new pill form of MS medication in England (Scotland apparently don’t want it). Yes a PILL! No more needles! Although obviously being a new drug this pill comes at quite a hefty cost. You need to take the pills daily at a cost of £40/day. [Eek £40/day!] The feeling of excitement and relief was quickly replaced by the feeling that I’d have a fight on my hands. 

The NHS has a couple of criteria for getting your hands on these pills - 1. that you’ve tried one of the injection versions unsuccessfully for a year, 2. that your MS is ‘very active’. Unfortunately I obviously don’t fit into category 1. and I am just learning that proving your MS is very active seems to be the same as ‘how longs a piece of string’. My neurologist is keen for me to start on Fingolimod/Gilenya (the new pill), she just has to submit my case to the Primary Care Trust (PCT) for them to agree the funding...so my fight has begun. The MS nurses are busy collating my records to create a good enough case for Fingolimod and I think all I can do is pray. Pray that everything I’ve been through is recorded accurately somewhere, pray that the PCT look kindly on me, pray that the NHS works quickly this time. Hopefully this fight won’t be too hard. 

Jesus, please give me a passion for getting to know you. When I think I’ve not got enough time, make procrastination seem unattractive, give me strength to do what I *need* to do quickly and help me assess what is actually necessary. Guide me to the right parts of your word, focus my thoughts in the right direction and make my life quiet enough to hear you. Please help me make you #1.

I love this photo. I love it because there’s snow. This is the exact antithesis of my other great love, sunbathing, but there’s something almost magical about snow that I just can’t resist. I’m not the kind of person that wants to rush out and build a snowman or an igloo, or even lie on the ground & make a snow angel, I just like walking around in it, hearing that creaky-crunchy sound.

I love that you don’t know how deep the snow is and don’t know how far your foot is going to go in (my husband thinks I’m silly for wanting to take a ruler out with me to measure the depth, but I can’t resist having the ‘my snow’s deeper than your snow’ competition with anyone who will play). I get even more excited when new snow builds up upon old. That on the second day I can wake up to fresher, deeper, crunchier snow and walk the same roads with the same (maybe a little more) excitement and crunch as the first day.

Snow always reminds me of Psalm 51:7 ‘Cleanse me with hyssop, and I will be clean; wash me, and I will be whiter than snow’. I always find it amazing, humbling when I remember that the almighty God thought I was worth sending His only son to suffer an excruciatingly painful, humiliating death so that I could be whiter than snow. Slate wiped clean. A new beginning.

But this picture has made me think a lot recently and question my use of the ‘whiter than snow’ verse that we pray so often. Do I really want to pray that verse over my life (or others?) Do I need to be careful exactly what I’m praying for? When I actually look at what I’ve been asking for it suddenly doesn’t seem as attractive. I think I’ve often used it in a ‘prayer for forgiveness’ context. That because God has forgiven, I am now whiter than snow. This is an amazing, wonderful gift. Snow is a beautiful pure thing, but when it melts you’re still left with the dirty pavement below. When I forget the blessing of forgiveness and go back to things from the past, what am I left with, the dirty pavement?

When I am hurting, when I am struggling with God because He doesn’t seem to be answering my prayers in the way *I* want, what if He is actually just digging up the pavement? Going deeper. Removing the dirt. So when the snow starts to melt there’s something new, more of Him, more white snow beneath? What if in the times of pain and tears He is ripping things out to lay a foundation of white snow? No matter how hard, no matter how painful the pavement is to let go of, surely a foundation that is as white as snow will be infinitely better than what was there before?

I get that because He died I am saved. The slate is wiped clean. I’m as white as snow. But what if I’m still clinging onto the pavement? What happens when the snow starts to melt?

‘See, I have written your name on the palms of my hands.’ Isaiah 49:16