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28/04/2013

technical help

I finally tracked down a help group


After the annual extra-large-family- gathering at Easter time, where one can spend four days literally catching up with nothing in particular but renew kinships at the same time, I was persuaded to join up with a MS help group by my aunt, a long term MS sufferer.

"Aunty" * showed me a Copaxone Injector Kit that looked pretty awesome in it's use. No needle shock as it were and easy to use. She made me practise a lot with a done syringe for half an hour. Even then, by myself using the kit, I still forgot to remove the red cap- wasteful- all over the floor when I realised. But then, I have wasted two others too! Anyway.

Some prehistory- just a few weeks before, up early like 5am for work and I was doing the self injecting thing, and not really noticing how I was holding the dang thing, and must have paused and drew back some-a little bit- blood back- Well when I realised THAT it looked like a red blob in the syringe- I went- CONTAMINATION ARFHGH$%^! Dummy! I took the needle out almost straight away and went into a calamity-oh-WTF-is-going-to-happen mode, and went and laid down on my bed.
I was feeling weak.
Then hot.
Shakey.
Could I call out to the kids?
No- was instantly asthmatic!
Cold.
Spasms wracked my baddish back most intently.
Needed to evacuate the bottom end.
In the rush to the loo, there was an urge to throw up as well.
Get there, hot, cold, shakey,
and
Nuthin'...

Creaked my way back to the bed over-thinking  what can I do? Aids? How did the thing get through quality control etc etc.

Anyway- ten minutes later or so- felt fine, like a plague had not got me feeling so weird,  not contaminated with an instant deadly virus after all!

When back at work, I did the quick rounds later on, of "Help me" type calls: the pharmacist and aunty, and they said- "shock is all, probably happen a few times the next few years, just a typical reaction".

Me- sure...

Oh yes, I do remember reading that too...

Anyway- back to Easter- my aunt encouraged me to grab a help bag kit- "autoinject2". Alright.

I had previously sent off to the Copaxone Help group, but the Join Us note had Never Arrived I was to find out.

I called the help line on the mobile phone at lunch time the Friday after Easter- leaving a message that I had tried to get in touch in November...?

A few hours late, a call back.  From "Pip! Call me Pip!" And how could she help me?

Well- my life story and a bit of quiet shock from the other end and then a pat on the back for how well I was going all by myself- but now she knew what to do for me, and would be keeping in touch and sending a help-pack and all.

Help pack with auto-inject kit arrived by HDL special delivery----

MONDAY morning!

And a few weeks later a call back.

That's great. Just need to attend the MS groups that meet around here at odd times- I completely forgot the last one.

Ah well. Not taking the MS thing lying down, but then it has not really knocked me about that much, like some people I know now- speaking of which- NS and camcer did take Chrissie Amplett of the Divinyls way the other week, that was sad as she was from over the Bay from me as a kid and my age about. Bugger.

Still walking and talking, I still have the odd tingles below the waist, but not as intensely as the initial feelings, nor has the eye sight been affected again, but then, nor has the left eye completely recovered, but I can type this so it must be getting better.

By the way, I have just finished reading a few great books or three on my Kindle#2-
"Power,Sex Suicide : Mitochondria and the meaning of life" by Nick Lane and
"Life's Ratchet : How Molecular Machines Extract Order From Chaos" by Peter F. Hoffman.
That was a few intense weeks I tell you! Highly recommended to everyone.




*And she probably might hate that moniker as she is only 12 years older than me!

10/02/2013

Twinge here

Twinge there

The last month, been little twinges as neck as nodded the old noggin, down the legs, for a day anyway, but not as bad as the first time.

maybe the Copaxone is alleviating symptoms.

With new work had to put off 6 month appointment for a month...

25/11/2012

Huh did not hurrt

Huh it Did Hurt later


A week into the new self shot medicine that does not hurt to do.

But it does man, a few days there is still an Ow to feel where the shot went in!

Bugger drugs! Man, a sore spot like that will take a while to get used to.

The left eye is still recovering, I can read the key board much better than a few weeks ago anyway.

White cars are still not White though.

What a bugger.

20/11/2012

Ready squint...Oh

Set up a Injection Seminar


I saw the local GP's nurse today as far as the instructions for using [haha] Copaxone wants me to do, especially for the first use anyway.

"Like diabetes patients have to", said Lauren, who was quite supportive.

So I did my first self injection with: a squint and a n d  o  k,   p u s h   i  n  . ...

OH?

Never felt a thing!

Shultz like- "Ah feeled Nudink!"

Afterwards, there is the stinging as was fore warned about, but there you go.

BTW, the eye trouble did not wink away...

19/11/2012

Tomorrow a new start

Prescription for a New  Start

A prescription arrived today. For Capoxene medicine.

paper attached recommends to start with some help-like a partner or doctor or nurse.

Well, a] cannot do, b] why? and so c] is at 10:45am...

It will not be traumatic... just the start of a new treatment to alleviate the next effects of my MS.

Hmm, a new Start for sure.

10/11/2012

Decision made

Why did I have to decide?


Ernie my neuro wanted me to choose which MS medication.

Does he not know which is best? Out of six?

Hate that sort of  thing.

After reading some booklets all about the various drugs[?], the tablets looked good but the capoxone looks like the readiest and maybe works well, as my aunt thinks it is pretty good for her. A day of monitoring the tablet effects in a hospital bed put me off even if it is 50% effective.

A text message was sent to the nurse to pass on the decision to Ernie, hope that means it is in the mail?

And the greyness and macular degeneration LIKE effects in the left eye are slowly easing back thank goodness.

02/11/2012

lil old visit

Visit to the neuro today


Another 3 hour trip to this side of The Big Smoke to see what I can do with the last episode still dimming my sight... and only two and a bit back, Not Speeding, and was a lil dampish road-wise.

Hooray- Ernie said I can go on MS meds- capaxone looks good at 30% reducing the effect of an episode, but there is a new one that can be said to be 50% effective- Gelany

Just the side effects... could be fun trying it all out I spose, this dim sight could be frightening next time.