Sunday, June 26, 2011

MRI Tips & Results

Okey dokey then, so the results of my latest MRI are in.

But before we get to that... I mentioned in an earlier post that I am quite okay with being slid into a Magnetic Resonance (MR) machine, with a cage over my head.  But I wanted to contribute my tips for making your stay in the MR machine a little less stressful.  Well, anyhow this is what I do... and it works for me, so maybe it could work for you too.

I acknowledge that I am going to have an MR session.   It sounds stupidly obvious, but I think it is important to say, yes I am going to have an MRI and it is my choice to do so for my health.  I was lucky for my latest appointment that the scanning place makes phone calls to confirm appointments, because I forgot totally and so did my diary... big oops!  I did acknowledge the fact that I wanted to have my MRI, but it was just much, much later than normal.  No harm, no foul though.

I try not to dwell on having an MRI, or entertain any anxious thoughts or linger on the fact that I might need to have the gadolinium contrast because the first time I was given it, it made me tremendously nauseous (and if you have read my randomness page you will know I hate even the thought of being sick).  I also try not to obsess on what the MRI might find... (I’m almost too superstitious to write the dreaded word)- progression.  The flip side is much better to mull over - so try that - maybe your MS hasn't done much and has been behaving like a peaceful sleeping baby.

I make sure that my husband is able to come along and wait for me.  When you are in the MR machine it is comforting to know that someone in the waiting room is there just for you and they will buy you a stiff drink afterwards if that’s what you feel like.

Before you are confronted with the MR machine... know what you need to be comfortable and do it or ask for it.  The dudes (could be dudette) doing the scanning want the same result as you - good clear pictures and the way to achieve this is by the client, ie you, being comfortable.  The things I need to be comfortable in the machine are padding under my head - I'll never forget the time when the back of my head being aching then burning in pain after half an hour on a hard cold slab of plastic with at least another half an hour to go.  I also like to have lots of padding under my knees, otherwise my back aches and of course, a blankie to keep me warm.  I find it best to keep my socks on too, because I can't handle, in any shape or form, cold feet.  In the past I have also asked for a CD of my favourite music to be played, which I brought along, but even though it was played directly into the machine I couldn't hear it!  So I skip that now. 

It's also imperative to tell the scanner dude about any bad experiences you may have had, such as me with gadolinium.  I was told some of the reasons why I could have had such a reaction, and one of those was that perhaps the gadolinium was injected too quickly... so more care was taken and I was fine the next time it was administered.

Before I am in the MR machine, I also like to clarify when I will be able to cough or wriggle.  I usually ask that the scanner dude informs me when it will be okay to move.  If I have a cough I mention it because it is more likely the dude will allow me a chance to cough up a lung after I have been holding onto a tickle for 10 minutes that wants to explode into a cough.

When I am in the MR machine I generally begin by listening to the sounds it makes... and I try (don't laugh) to turn the sounds into words and just repeat that word over and over until the sound changes then I begin the process all over again.  One of the words I remember from my last MRI was "Simon, Simon, Simon".   It's not hard to do, especially since with ear plugs and padding over my ears I could still hear the drumming... and what else are you going to do when you aren’t allowed to move huh?

The next strategy I might try to pass time in a MR machine, especially if I have an ache or am cold... (again don't laugh) is I imagine I am butter melting in the sun.  If you are saturated fat conscious or vegetarian I guess you could imagine you were margarine melting in the sun - the effect would, I'm sure, be the same.  You have to imagine your butter body melting slowly onto the table, melting over the ache, or warming up.  It sounds ridiculous, but the more elaborate and the more involved you get the better it will be.  Sometimes I have imagined I am butter melting into beach sand just for extra thought blocking power!   Remember a block of butter melting in the sun will be a slow process - it's an old relaxation technique and it really works.  Try it next time you are on the slab.

The next technique I try and which again requires a good deal of imagination, but is very good if you are starting to get anxious, is how I would spend a lotto win of 37 million dollars.  I start off with how I found out I won, did I watch the draw on TV or was I standing at a kiosk, did I faint on the spot, jump around squealing or just stand there with my mouth wide open?  How did I tell my husband, how did he react?  Who would I give some money too and how much?  How would I spend the rest?  It is not enough to say oh I would spend it on a holiday, a new car and renovations but you have to embellish your spending spree as much as possible - live it in your mind.  For example for a new car I might run through all my favourite cars, imagine them in different colours, imagine test driving them fast around a winding road, making a decision and then paying the salesperson cash etc.  The key is detail and lots of it because it distracts you from where you currently are.  It's also really important to feel the emotion surrounding such a windfall... for me it would be elation, because then, if you get into it enough, you might just forget that you are freaking out.

After you are out of the MR machine, I find its best just to get on with what ever you have to do for the day.  On the occasion I had a bad experience with gadolinium, I tried not to dwell on it.  Knowing that if I did, it would scare the heck out of me for next time.  I did need to examine those thoughts and anxiety about having gadolinium, but I tried to look at them a few days later when the freshness of the experience had dissipated.  We all know that if you are upset or anxious your thoughts will be horribly distorted... and well it's probably best that these aren't what you program your mind and body with since, if you have MS, you are likely to be having many more MRI's in your lifetime. 

For me these things work... and work well.  For my last MRI I fell asleep.  My husband was waiting for me and after an hour and fifteen minutes he asked a nurse where I was.  Other being woken every now and again by a voice asking me if I was okay, or if I needed to cough I think my (non) ordeal felt like it took fifteen minutes.  Yay! 

All right then, here are my all-important results... has Mr C been doing his job?

Here are the comments for my MRI of the brain.  Slight progression since the previous imaging with one new lesion identified, but no active enhancing lesions demonstrated.

And the comments for my MRI of the spine, no definite new lesion or progressive disease is identified in the cord and no evidence of progressive cord atrophy.

Sounds like Mr C might just be doing his job in defending my myelin.  Good on you Mr C.  However it was a little disconcerting to read that my one, currently not active new lesion was 5mm LARGE.  This is my biggest one to date.  I don't know if it big compared to other people's lesions or if it's location (in the subcortical white matter at the superior aspect of the right parietal lobe) is significant or not.  Some of my older lesions are showing evidence of cavitation, whatever the hell that means…  While I don’t know what that means, I reckon I know what caused my new lesion and the cavitation... the 4th year statistics I was studying at uni this semester.  I couldn't work out where all the stats knowledge was going and clearly it was escaping into my 5mm big black hole and cavities never to be found again!

What I really do know is that my neurologist has not schedule an appointment for me, so he must be happy with my results.  So if he’s happy, so am I.  What else could I ask for?  Hmmm, how about no MS and 37 million dollars!

Saturday, June 18, 2011

Copaxone Vs Other Injection Types

The other day I had a flu shot and a couple of days later I had an MRI with gadolinium contrast, and well we all know by now, I have daily injections of Copaxone for MS.  Thus I think I am qualified (although probably not highly) to blog about injection type and the pain involved with each.

The flu shot was an intramuscular injection and it was injected into my left deltoid muscle... in my upper arm.  I was at the doctor's surgery and I was with my kids, Chynna and Sabin and we were all getting the shot.  Chynna literally begged to go first, but once we were in the nurse's room she quickly changed her mind.  Poor little Sabin was the nurse's first victim.  He let out a little yelp, but was very brave.  I was next.

I think I pissed the nurse off, because I had to buy a flu shot from the pharmacy next store.  It was super, just out of the fridge cold and I figured I would warm it up a little, so I took the shot of it's packet and put it under my arm.  The nurse in question spotted the injection under my arm and gave me the, what the hell do you think you're doing look.  While she said nothing, I felt compelled to offer her an explanation... the injection was cold, very cold, icy cold and that it would hurt if the close to freezing 10mls was injected into an arm.  She tsked, clucked and puffed herself up like a blow fish before saying it only takes a few seconds out of the fridge to warm up to room temperature.... a few seconds my arse!!  Clearly I never said that, because she was going to be the one holding the syringe in a few short minutes time.  She was obviously having a bad day anyway as was pretty short and abrupt with us.  Who knows, perhaps she had to lance a boil on some old lady's bum, or got stuck in traffic having to listen to Justin Beiber or woke up on the wrong side of the bed then tripped over the cat on the way to the bathroom prior to seeing us.  We all have days like that, well perhaps not lancing a boil on an old lady's bum, but fortunately we don't have to shove pointy instruments of terror into another human's arm either.

The nurse lined up my arm and then stuck me with the needle - far out!  I couldn't yelp or even scrunch up my face for that matter, as my daughter had to have her shot next, and I can tell you, she was watching me like a hawk... looking for any excuse to fall into a blubbering heap on the floor.  Although I am not fazed about having injections, this one really hurt, especially because I couldn't release the pain via a yelp.  I didn't have long to think about it though, because the nurse had seated Chynna on my lap and was placing my hands on her arms to hold her in place.

Chynna was whimpering.  The nurse had the needle poised above Chynna's arm, when I saw what the problem was... The needle was like a toothpick - MASSIVE!  I was pretty sure the nurse was going to stick Chynna with it only to find that it was poking out the other side of her skinny five-year-old arm.  But before I could voice my concerns the needle was in and Chynna was like a screeching plank of wood.  Just by her reaction I could tell the pain was about a nine point nine, nine, nine out of ten on her scale. 

Chynna used to be amazing with needles.  She breezed through all her immunisations without so much as a peep, until the four year old ones, which involved two injections.  The same grumpy nurse as mentioned earlier decided in all her nursely wisdom, without consulting me decided it would best if she and another nurse hammered Chynna with the two needles simultaneously.  So there I was holding my little slip of a child, when without warning they struck, banging the injections into to her arms so quick that her head and mine were left spinning.  If they had of asked, I would have said, oh, one needle at a time is fine - she'll sit still for the second because she's really good with needles.  But instead they ruined her for me... meaning that they are not the ones that will have to deal with her anguish at being injected and her lamenting afterwards until she’s all grown up and even then I bet she still asks me to go with her! 

Luckily I had a three pack Twirl on hand to soothe our pain.  I'm not sure about Sabin because he can't talk yet, but Chynna's arm and my arm were pretty sore for the next few days, I couldn't sleep on my favoured side in my usual sleeping position because my arm was so pulverized.

A few days later I had a scheduled MRI to check if the Copaxone I have been injecting for six months is having any modulating effect on my MS.  In the past, I have had an intravenous cannula put in my arm for the super quick administration of the gadolinium contrast in between slices being taken... slices being the images the MRI takes.  Instead this time I was in the machine on the narrow table with the head cage on when they pulled me out took my arm and said, just a little scratch then carefully slid the needle into my vein.  Talk about feeling vulnerable, but it didn't hurt anymore than a scratch, which was a good thing because I didn't have much room to squirm.  Then I was pushed back into the machine.  It mustn't have been a big deal for me because I am pretty sure I fell fast asleep. 

It's been about six days since the IV injection of gadolinium contrast and I still have a bruise at the entry site, quite disproportionate to the amount of pain felt.

By now, giving myself the daily Copaxone injections is pretty routine.  Copaxone is injected subcutaneously into any fatty areas (I have a lot of those) just below the skin, usually in my belly, thigh or hip.  Thigh injections I find sting the most... but they are nowhere near bee sting proportion as is most often reported on the web.  Chynna was stung by a bee two or so years ago and she writhed around and squealed in pain for about an hour before she would take any medication.  And she is still distressed by bees till this day.  I definitely do not do squeal and writhe around every day after my injection because my injections do no feel like a red hot bee sting... not even in the slightest on the worst day.  On the worst day I have a welt the size of an egg hanging off my leg (o I do exaggerate - slightly), but usually by the next day it has gone down considerably.  Sometimes, but not very often now, after a couple of days the injection site might itch, but it's nothing some anti-itching cream can't stop. 

My husband used to give me my hip injections for a long time because your hips are in a difficult position to reach, if you are holding an auto-injector that needs to be in the engaged position while you press the button to send the injection hurtling into your skin.  I asked him to inject me the other day... and as he placed the auto-injector towards the back of my hip I flipped out.  The thought of someone else injecting me now, is too much.  I like to have control of where I place the Copaxone and when I press the button - c-o-n-t-r-o-l freak you are thinking... hey it's my fatty bits we're sticking a sharp pointy object into.

All in all, if I had to have an injection every day (woops, I do!) I would not choose to have the intramuscular flu variety - too painful for too long.  As I am appraising injection types on the pain they cause I guess I would not pick daily subcutaneous injections of Copaxone either... but this would more be due to the side effects I think.  I'm not saying there isn't any pain associated with subcutaneous injections of Copaxone - it's not like a bee sting... it is a sting that tends to be a little different every day depending on the injection site, but mostly they are pretty harmless.  So I guess that leaves me with my experience of an intravenous injection of gadolinium... hmmm it was like a sharp scratch - not very painful at all. On the down side, I bet you would have to have a steady hand, there are only so many accessible veins you could inject into and well, people would suspect you were a junkie with your track marks.

This is my final rating of injection types (in comparison to each other) that I was given last week.
Intramuscular flu shot: 8/10
Subcutaneous Copaxone: 5/10
Intravenous gadolinium contrast: 2/10

Thursday, June 9, 2011

Sneaky Robbers

Not so long ago, I rolled over in bed and discovered my husband wasn't there, foggy with sleep my brain decided he must be in the toilet.  I must have dozed off but when I woke again he still wasn't in bed.  I looked at the clock, it was 3am.  I think I said something like are you going to the toilet, but was shushed pretty quickly.  Ryan was listening to something... and immediately I was awake.  He came out of the ensuite, saying he had heard something next door, that the noise woke him up.  He was at the window next, then he was putting on his shoes.  He said there is someone standing across the road... I asked him if I should call the police.  He, of course, said no.

In the meantime, while Ryan was getting dressed or something, I snuck an eye around the blind and sure enough there was a figure standing across the road, a little to the right of where I was standing, under street light.  I guess he had nothing to fear... it was 3am and he had a pretty good view up and down the street.  He didn't look very old - perhaps in his 20's wearing shorts, jacket and a hat.  He was just standing there.  It freaks me out to think that people, and probably people up to no good, are just standing out in the street, just metres away from where I am sleeping at 3am in the morning, all nonchalant but with a sneaky, cunning plan to wreak havoc.  Where was my faithful dog, Humphrey you ask?  Snoring in his bed that’s where!  Obviously he has no wake up out of my slumber THERE'S BURGLAR'S A'FOOT 2nd sense!!

Ryan went to the front door with the keys, all intent on getting out quickly... but when you are in a hurry and it is 3am your fine motor skills tend to fail abysmally.  That was kind of a good thing in my book and probably a good thing for the sneaky robber across the road as well.  Instead, he huffed; I'll just turn on the light.  I was still at the window and when the light went on, the sneaky robber's hand lit up, he was holding a phone.  It seemed like he fumbled, because the light went out quickly, but then it was on again briefly.  Dirty little lookout!  Very quickly, he was joined by a second shadowy figure.  There was a bag on the ground between them with the second person reaching down into it... putting something in I suspect.  Then they walked up the street.  They didn't run and didn't even seem to be in any hurry.

At this point, Ryan had managed to get the door open - probably not even 20 seconds after he had turned on the light.  The moment he was outside I called the police.  I didn't call 000, because no one was dying... yet, but instead called the police attendance number, which told me it was after hours and I needed to call another number.  A woman answered...and I started with, my husband is outside chasing some burglars up the street.  After a few minutes, Ryan returned, saying he couldn't spot them anywhere that they had vanished into thin air or lived on the street or had a good hiding spot.  I had to go over my story a number of times with the woman on the phone, clarifying details and giving descriptions for about 15 to 20 minutes, all the time thinking, what the hell - the sneaky robbers are getting away.  

Not three minutes after hanging up the phone, there was a police van out front, with a big (f**k off) sniffer dog exiting the back of it.  A police car closely followed the van.  Ryan went out and gave them some man-chasing-sneaky-robber details.  They seemed to be super noisy in the 3.30am dead of night silence, however no one came out of their houses, not least our neighbour whose house the sneaky robbers where trying to break into.  Humphrey did finally wake up and insisted on adding his squeaky bark to the fracas.  

The police and the big (f**k off) sniffer dog wandered all around our neighbour's home, but still there was no response from him.  We decided he certainly wasn't home.  During the next few minutes the van and car zoomed off in a hurry... we can only hope that the sneaky robbers were apprehended and sent to prison for a long, long time (doubtful, I know).  However during the next half an hour, a police car drove up and down our street a couple of times - making it seem less likely the sneaky robbers were captured.  All I can say is that if they were not caught I hope that they get shocking jock itch, athletes foot, head lice and anything else-itch for a year!!

The next day we went next door to tell our neighbour about what had happened.  My husband began the conversation facetiously, so, where were you last night Joe?  At home, why?  Really, you didn't hear anything? Ugh, no...  Not even at 3am when someone was trying to get into your house?  Joe (not his real name) didn't even seem shocked; deadpan he said oh I'm a heavy sleeper.  Well you'd have to be, to miss a sound that woke my husband in the house next door!  Joe went on to say, well there's nothing to steal here and he's probably right.  It's the most "unappreciated", least security conscious house in the street.

Gossip on the street indicated that the sneaky robbers had also broken into a car parked on the street by breaking a window, nicking some change and a big heavy technical manual of some sort - good luck with lugging that around boys!

In the next few nights, when my husband just happened to be away... I was hyper-vigilant.  I knew I would be, even though my husband and I discussed the sneaky robbers at length; whether they were opportunitists, whether they'd return to get the person who called the police, when Humphrey would bark if someone was breaking in etc etc!  It seemed to help at the time - but in the hard cold dead of night, I really was quite unhappy with the whole sneaky robber situation.  

They didn't return, but I try not to think about the people, and probably people up to no good, who are just standing out in the street, just metres away from where I am sleeping at 3am in the morning, all nonchalant but with a sneaky, cunning plan to wreak havoc.  And I try very, very hard to remember why we have a teeny toy poodle with a falsetto bark range and not a big (f**k off) dog with a big bass bark.