Just received my first rebif delivery and I’m feeling a bit wobbly. It all seems very real now. Huge box arrived full of all sorts - sharps bins, cool bag, heat/cold pack, screwdriver (?!) and a flipping massive shoulder bag! What on earth am I supposed to so with that?! Was planning on doing my injections at home, no fuss, not carting the whole lot round the place
hi i started on rebif in april and also recieved large box…when nurse comes to show all about it you will find you use very little of it…the screwdriver is to let you put batteries in the rebismart…it’s dead easy once you get started
Even though it was 4 years ago, I do remember the hissy fit I had when my huge box of goodies arrived with the Rebif. I wasn’t really prepared for such a big box.
My deliveries normally come at work unless I’m on holiday and I had warned my colleagues that I was expecting a delivery and when the driver handed over the huge box I remember my heart sinking. At that moment a colleague chirpily enquired “Oh, is that our box of injection kit, then?”. I’m afraid the red mist descended (that happened a lot in the first six months after diagnosis ) and I blurted out “Here, you have it then and you do the sodding injections!”. Everything stopped in the office, a deathly silence fell and all eyes were on me so I decided it was time to take a quick coffee break and just stomped out to let them get on with b*tching about me!
The problem is that they didn’t have a clue what a big thing it was for me and how I was struggling, not only to come to terms with the diagnosis but with the thought of having to do injections. As you say, the arrival of the injection kit made it all real; there really had not been some massive mistake and I really did have this incurable chronic condition for life. I am still sure they think that I was the one being unreasonable but they could have tried so much harder to empathise with me.
Now for the practical advice - the hot/cold pack is to use before/after injection as some people find it helps with the injection sites if you numb it first with cool pack or warm it with the heat pack. You will have to play around with that to see what works best for you. You can always ask for another one if you want one to keep in the freezer and one to keep for warming.
I take my small cool bag to work with an ice pack so that when I receive my delivery it keeps cool until I get home and can put my Rebif cartridges in the fridge. It has also come in useful as an individual cool pack for sandwiches
The large shoulder bag is to be used for travelling I believe. I think yours will be slightly different to the one I have as mine is designed for the auto injector I had before the brilliant Rebismart was available. There should be pockets for all the necessary kit you will need for more than an overnight stay, such as spare cartridges, mini sharps bin etc. If you do take a holiday abroad you will need a letter from your nurse or your delivery company (BUPA provided mine very promptly) confirming that you need to travel with syringes, injectable liquids and cool bags for medical reasons. This can then be produced for airport security. The Rebismart and all the kit is safe to go through the same security equipment which says it is safe for cameras. You must keep your Rebif as hand luggage as if it is checked into the hold there is the danger that it will freeze and will be unsafe to use.
Oh and the screwdriver is simply used for undoing the battery compartment
You didn’t mention a DVD - does that mean they have stopped including that in the pack now? I lent it out to friends and family who were worried about me. I’m not sure if they were bored by it or reassured but they did stop asking silly questions …
Good luck with your first injection hun, I promise you it isn’t nearly as bad as you think it is going to be. I’m a complete wimp and I managed it
Ah thank you so much Tracey that’s really helpful. Yes I did get the DVD in a pack with some books and diary for recording injection sites/side effects etc. not watched it yet though. Decided to take my mind off it watching a few episodes of Breaking Bad with my son! I’ve already been panicking that the temperature in the fridge won’t be right! I thnk what got to me most was realising that this is something I’ll be doing for years (maybe forever!) cause I got a calendar of delivery dates for 12 months and the info said rebismart would need replacing in 2 years. I’d already had my sobbing, wailing meltdown for the day about something else before it arrived though! I’m going to the hospital Tuesday lunchtime to do first injection.
I feel for you I am not on rebif but started copaxone about 2 months ago. I was fortunate that I wasn’t in when delivery arrived and when I got home the injections were in the fridge and the bag and shatps bin were on the side. I understand it all becoming so real this is a big thing for anyone to deal with. It has now just become part of my day just like brushing your teeth. I do still have times when it still all comes too much that I might be doing this for the rest of my ddays.I do have a good cry. Good luck for Tuesday and I send you a hug Barney
Good luck for Tuesday, hun