Saturday, 9 January 2010

the tears and music of love

There's nothing better than staying in all day for a delivery is there? The delivery slot for my Rebif was 9am to 4pm so obviously my bumper batch-o-fun came at 4.30pm. Ah well.

And what a bumper pack it was! My delivery included:
  1. A month's worth of Rebif
  2. Welcome DVD (unwatched as yet)
  3. Rebismart injection gizmo with batteries
  4. Sharps bin
  5. Cool bag
  6. Rebif-brand laptop bag (!)
Phew! It was quite dizzying actually - I also got a calendar for all my deliveries for the rest of the year.

What needed to be chilled was put in the fridge and the rest was left in the box until we got to Monday when, following a brief trip into work, I went to be shown what to do by the MS Nurse.

This was fine - despite a bit of faff with one of those rubberised "fake-skin" injection-practice doo-dads - the Rebismart will only do it's thang when in contact with human skin. It also keeps a record of how much you've injected and can inform you if, for whatever reason, the injection hasn't worked properly - very clever!

So the first time I got it to work was when I was sticking it in my belly. I warned the nurse that there may be some coarse language at this point, but I was quite pleased that I managed to tone this down to a (whispered) "son-of-a-bitch".

Then I went home and, to be honest, I felt great and continued to feel great for the rest of the day - no "flu-like" symptoms other than a slight touch of nausea the following day. I also had a physio session on Tuesday morning, which was a bad idea - I know now that early morning physio is a sure-fire way to mid-morning fatigue!

At the time of writing I've had three injections and I feel pretty good, and more positive than I have in a while. My wife says that I'm like "my old self" and a lot sharper than I have been in ages. So here's hoping that I've found my drug of choice!

By the way, the iSite-MS App for my iPod didn't really work out - it's not bad, but it's not that flexible for me; it might work out for other people. Luckily (and amazingly), it's not the only one available in the App store.

IASB
heartily recommends and endorses the (admittedly pricier) i-Inject App which I saw mentioned on the MS Trust website. This allows you to: select your medication of choice; choose the days you want to inject; set reminders for when you should be injecting; track the amount that you've injected (which you get from the journal on your Rebismart!); make notes of any side-effects/reactions, which can then be emailed (complete with your injection records), direct to your doctor, Neuro or drug company.

It also allows you to accept or reject your next injection site, with very clear diagrams to show where you should be aiming for - I think it's the business.

Interesting stuff going on at work - but it's getting late and time to switch my brain off for a bit!

6 comments:

paa said...

hey mate what's the best app for iphone for you? according to our 'problem'.
thx

stevedomino said...

hi there!

as i said in the blog, my app of choice is i-Inject - http://www.i-inject.com/

it's a wee bit more expensive (£8.99) but it tracks yr injection sites, the amount that's been injected, and can email any issues to yr doctor and drug supplier - worth looking into, especially as (according to your other comment) you'll be using it in conjunction with RebiSmart - it's good to use technology to help with our "problem"!

paa said...

thx, so let me introduce me
Paolo from italy, i'm 40
in ms since 1999
in avonex since 1999 as well
in rebif since 2007
ciao
thx for the answer

Anonymous said...

11,99€ here !! :)

stevedomino said...

i know it seems a bit expensive especially compared with some other apps (including the i-Site app - http://isite.ccsln.com/) but it is really useful especially for tracking where you've injected previously and suggesting new sites (which you can reject if you really don't want to go there). this app is also more flexible about when your injections take place - you can't plot specific days (eg Monday, Wednesday and Friday for Rebif) with i-Site but you can with i-Inject.

are there any other apps that anyone can recommend?

Ciao Paolo - your country is beautiful - my wife and I also got married in Venice 3 years ago, so many happy memories for me!

paa said...

start rebif smart y'day
looks funny but i'm already bored about it,

maybe greaT NEws for us...
something news has been discovered
google : ccsvi in ms

i'm going into sperimental examinations

hugs mate