Rob's Blog

http://www.youtube.com/watch?v=qB6O8e4SbyE&feature=relmfu

And yet another moving account of someone living with MS..  I can relate to Rob when he says he loves communicating with people.  I am not sure what I would do if I couldn't have a good old chat to someone.

Jason's Blog..

http://www.youtube.com/watch?v=YVdJDmKobtA

Well done Jason..  Such a positive attitude.

Jagged little pill

I took my last jagged little pill today...  It's a day I have been waiting forever to arrive!

That being said, it's now onward and upward for me..  However I am home sick today because I haven't been sleeping..  Two days in a row I have been wide awake at 3am and unable to get back to sleep and waking up with headaches.

Hopefully things will start to settle down now and we can all get on with our lives and I might get some form of sense of humour back!!

To celebrate I have put a bottle of wine in the fridge and just to be rebellious I am NOT going to use a glass when I knock it over!  Whoops looks like I had better buy milk too!

The importance of cleaning out your belly button...

Not sure if it's normal, but I've noticed since I have been on this god awful drug that I have an increased amount of skin tags..
Now, I don't know if this is related to me loosing a lot of weight very quickly (over 6kg in about 3 weeks), but I have noticed them mostly on my tummy as well as INSIDE my belly button.. 

So is this where people are saying.. How did you notice the skin tags inside your belly button???

Doesn't EVERYONE stick their finger in their belly button to clean out the fluff n stuff??

On the wind down.. FINALLY!

Hey Folks!

Finally I am on the wind down from the Prednisolone!!!

We saw my GP (DrDP) on Friday afternoon and she has given me the OKAY to start to wind down off the drugs..

However, before my appointment I popped into the Emergency Ward at the Hospital and weighed myself on the same scales I was weighed on during my admission so they would know how many mg per kg to give me of the IV Prednisolone.  

It seems I have lost 6kg somewhere in the last two weeks..  I am not sure how or why because I have been eating twice what I would normally eat.  Admittedly I have been beefing up my meals with double the vegetables so that I feel like I am actually full and that has been keeping my hunger at bay and clearly also the extra kilos I thought I would be adding to my portfolio.

DrDP was surprised when I told her that I had lost 6kg considering a side effect of the drug is to put weight on.  BONUS!

However, I have started to cut back on the drugs and today my heart has been racing like a million miles an hour, I have a bit of a case of the DT's (shakes) and I am still quite hyperactive.

I have three tablets left in my latest script and I don't particularly feel like going and getting another script filled, so I am pretty much weaning myself off with a little bit of advice from DrDP. 

This morning I took one (1) full tablet, I'll do the same tomorrow and then I'll take half a tablet on Tuesday and Wednesday and I'll be done. 

I forgot to buy ice cream today...

I was cold this morning and Bloke was sleeping in cause he's doing nights this week so I went for a drive to our local large town which is about 45min drive and I bought dog food..   It was a nice drive, got me out of the house and into the car with loud music and the heater on.  I made a phone call to one of my dearest friends and had a chat to her but then lost her when I got out of the car in the Aldi car park... I thought I was having a conversation with her, but it seems she was still talking to the car in the car park.. Sorry Miluv!!! xx

Sorry, I meandered in my thoughts then.. What did I get up to?

Right, so DrDP has said that 6kg is a good start and that if we are going to be trying for a baby I should keep going cause it will be of a benefit..  Understood DrDP! 

BUT, the million dollar question is:  Do we want to go through all of this hooharr again??   Right now, the jury is out and I guess we will just go with the flow again and see what happens.

I want ice cream now........  Dammit!

A room with a view..

Thought I would finally get around to downloading some of the pictures I took during my hospital stay.

Maybe this picture is not so good for the faint hearted, but this is where they eventually put the cannula to pump me full of roids..  Not the best spot, but was the only vein that wanted to play nice on the morning.  The Doctor said that it's a good thing I am not a druggie cause I'd be stuffed finding a vein to inject into all the time.  I'll try and remember that!

This is the view from the room I was placed in on Day 1...

It had an awesome view of Emergency and the road and I would have been able to see the whole town go past.. Sadly they didn't leave me there for long and I was shipped off to a room to share with an older man who I'll call "Major" because of his surname and a connection to a Mobile Medical Army based Sitcom that sometimes still airs on TV.  He was a hoot and good for a chat about gardening.. He was in for a knee replacement and was a self confessed "Tough Ol'Bastard".. God bless him!

View from Day 2..

Nothing spectacular here apart from now being off the ward and in Intensive Care.. I was having severe chest pains and tightness at this point in time due to the drugs and please note the position of the ECG machine just in case I keeled over..  I think it's fair to say that the "Major" might have rubbed off on me a bit and I took on his attitude and became a "Tough Ol'Bitch" but that was only when I wasn't crying.

I was on 30 minute observation which included taking of temp, blood saturation, blood pressure blah blah blah, oxygen etc. 

You can't see it in the picture, but on the roof was a metal thing that had me fooled.. I was trying to figure out all fecking day what it could have been and I was stumped.. I couldn't really see properly either because my vision hadn't really come back completely, but eventually when Bloke came be sorted me out with an answer and I was all good.. It was a bracket to secure a ladder to the side of the building..  ALL that worry for a bloody ladder bracket...  Crikey!

View from Day 3...

Now, bear in mind that at this point I had literally lost my sense of humour.. I was cranky, crying and just down right miserable.  I felt like poo and all I wanted to do was curl up and have the earth swallow me whole.  Bloke spent more time in hospital with me that day.. That man is worth more than I can ever imagine, I am such a lucky woman.

All plugged in and ready to rock and roll...  Albeit a little swollen and worse for wear...

And just for good measure here is a picture of the fresh home made spaghetti that Bloke made.. It should make up for all the horrible pictures I have put up on this particular post.  Imagine it smothered in a Creamy Marinara Sauce with fresh parsley on the top!  Bellissimo!!

 Random, but hey if you are a regular reader of my blog you'll have figured that out by now!

Sleep... Hello where are you my dear friend?

It's currently 0430am.  I have been laying in bed for the last 90 minutes (since my last toilet break) composing this blog in my head..  Lets see how I go at remembering what I was ranting about.

I remembered today something that the eye specialist said to me when we were discussing treatment for my latest bout of Optic Neuritis.  We were discussing that my previous episode was treated with three (3) days of intensive IV Steroids (of which I cannot remember the name, but I may have blogged that previously).  Then home for rest, no further drugs (oral or otherwise).

This time around he put me on IV Steroids as well as a course of oral steroids of the same variety.  100mg a day (4 tablets a day that taste incredibly offensive and make you wanna gag - note to manufacuturer: Please for the love of god try these things before you put them on the market, a little bit of coating wouldn't go astray with these beauties).

Sorry, back to the drugs...

So, whilst I have now been on these for just over a week (started Saturday 30th June 2012) I guess I can start to see the real side effects shining through.

I have a constant horrible taste in my mouth which I would liked to something similar to toilet water.  Now, please don't get the impression that I am a regular at drinking out of the toilet bowl, but I would imagine this is what it would taste like if I did.

Additionally, but sense of taste has soured.. I can no longer really taste the food that I am eating.. It is like I am desensitised.  Chocolate doesnt have the same taste, I could be eating some kind of inferior chocolate and not even know the difference! Coffee doesnt taste the same and I miss being able to enjoy my morning cup of coffee.

My sense of smell is still good though, I know this because Bloke made a wonderful smelling Prawn Green Curry for dinner tonight, but when I tried it I was desensitised, it didn't have the punch it should have, although I am sure it did taste marvellous (at least he told me it did, so I believe him).

Now, lets talk about bowel movements.. Just for a short time, I won't linger I promise..  But my gut has started to muck up a bit.  It's not good, there is lots of gas and there is lots of unpleasant smells and I have been feeling very bloated and uncomfortable within myself.

Yesterday I was helping Bloke and his mate erect a carport off our new shed and I bent down to pick up something and farted.. Now, everyone knows that ladies do not fart (I didnt say I was a lady) but when it comes to doing it in front of Blokes mates I was a little embarrassed.. Fortunately he has a great sense of humor and took the piss out of me.. Crisis averted!  Maybe now he will feel comfortable about farting in front of me and we could even have competitions!

Right, whats next?  Showers..  Although I dont have sores all over my body, when the hot water hits my skin I do feel as though I do.  It's a weird sensation and I am sure it's just the hot water hitting all of my now slightly irritated nerve endings (or whatever) but it is somewhat odd and I havent had that feeling before.  I often finding myself checking my skin for sores but find nothing.. My body is playing tricks on my mind.

Sleep... Every friggin 90 minutes (or less) I am up to the toilet.  I am sure that I am just getting rid of excess fluid.  I have been awake since about 3am this morning.. It's cold and all I want to do is curl up next to Bloke and join his rendition of "The Hills are alive with Snoring" but alas I just lay there thinking about my next blog.. Mind going a million miles an hour.  They way I see it, the sooner I am off these drugs the sooner I can have my life back.

Pounding heart and feeling like I have the jitters and hyperactive.. Teamed with a bit of a short fuse.  Not good when I am being irritated. 

Did I finish the conversation about drugs that I had with the eye specialist?  No, I ranted.. Sorry about that.

So, Dr Eye said that he has read some recent testing that indicates that whilst receiving IV Steroid treatment alone is effective, he has read that following that up with a course of Oral Steroid wards off and prolongs future episodes.  So hence why he has put me on the orals this time around.  I am hoping that I can go another 2 years without another episode, that would be good, great, excellent considering I am one of the lucky MS patients who are not regularily having episodes (like more than 4 times a year).

I have to go back to my GP this coming Friday to discuss what is happening with the Orals.. I am assuming she will start to wein me off them.  They are apparently an addictive drug, how anyone could be addicted to a drug that makes you feel like poo all the time is beyond me, but each to their own.

Might be time to try and head back to bed now.. Psycho cat is awake and is channeling Jack Brabham and thinks that the house is now a raceway.. Maybe she is just bouncing around because she knows I cant sleep and I am hyper.  The dogs have been barking a bit tonight, there is a sly fox that gets around and I am afraid he stirs up "Dumb and Dumber", fortunately he doesnt seem to linger around for long and they go back into their little beds and curl up with their little heads on their little legs.

That being said I will now have vented this blog and I will think of something else which will mean I will just lay there again thinking....  But maybe this time I will think about what improvements we are going to make in the new house, so far I have already recarpeted the lounge, main bedroom (including walk in robe), considering carpet for in the dining room, but I am not sure (same goes for hallway and front foyer) and the sunroom.  The other bedrooms arent too bad carpet wise.  I might even pull up the cork tiles in the kitchen and replace them with floating floorboards. 

While I am at it, I might rip down the old curtains and put up wooden venetians..

Off to try and sleep now.. Thanks for letting me vent :)

One small step to helping others....

Today I feel like I have made a bit of an impact on someone's life via my blog..
Initially I wrote to deal, vent and record for prosperity, so essentially it was for selfish reasons. But if my random ramblings help someone else going through the same thing then that's a major bonus and somewhat rewarding even if just a little bit.. But that's enough for me.

I'd just like to take this opportunity to thank my followers/readers.

I apologise for the somewhat heavy reading I often put in here, but I do hope that I counteract that with a few that make you laugh as well.

Now, time for me to go back to sitting in the winter sunshine and watching the dogs get cranky about being swooped by Magpies.. 

Precurser to an episode???

I think I have come to the conclusion that for me, a warning signal that I am about to have an MS episode is tonsillitis ..
It just seems that everytime I have an episode strangely about a week before I have had tonsillitis pretty bad..

I guess it really is all about the body's early warning system!

Roids... They bugger you up big time...

God I am cranky..  Not only am I cranky, but I flip my poo at anything small that normally I wouldn't care about.

I don't remember the steroids having this effect on me last time.

But, it is the roids or is it that I am not sleeping well, I feel like I am bloated and very very ordinary.  Bending isn't on my list of things to do at the moment due to being all swollen I suspect.. I assume it is either my colon or probably even my liver trying to get rid of toxins.. But who knows.

I've had a week off work and am starting to feel a little better but the lack of sleep is getting too me..  So I might try and give work a go tomorrow if I feel up to it in the morning, then again my cognative ability isn't all that crash hot at the moment.  I am still a bit foggy and lethargic I am not confident to drive as yet, but I guess it will be daylight so that should be ok I guess.

I am now on Day 5 of steroid treatment, my eye is considerably better albeit still a little out of focus but I can see much much more than I could this time last week.  I am on oral Prednisolone 100mg a day as well as 20mg of Pariet twice a day to help with my gastro issues that are associated with the steroids.  12 more days to go.. Not that I am counting...

In all of this hooharr that is going on with the miscarriage then the MS episode we are attempting to puchase another property..  We have made a few offers to the owner of this house we like and she still refuses to budge.  One minute you think she is keen and the next she has a chat to her "family" and they seem to put her off..  I am beginning to think that she either doesn't want to sell (she has already moved) or her family don't want her to let it go. 

I am beginning to get over it very quickly.. Sadly because we have made counter offers she now clearly knows that we are very interested in the house and that she now has the upper hand, I HATE that when it comes to buying a house.. We should be the one with the upper hand, it's our money for gods sake!

Right, enough of that, I will end up crying and rocking backwards and forwards in a corner if I carry on with that caper and I don't know where the nearest mental assylum is...