Sometimes the smallest things can make your day. This is a note I received from one of my nieces, Lara. It's so sweet that a 6-year-old would even notice I am sick, let alone take the time to make me a card. I love it.
Cheers
Michelle :)
Tuesday, 25 January 2011
The View From My Couch: Unexpected Notes.
Sometimes the smallest things can make your day. This is a note I received from one of my nieces, Lara. It's so sweet that a 6-year-old would even notice I am sick, let alone take the time to make me a card. I love it.
Cheers
Michelle :)
Thursday, 13 January 2011
The Queensland Floods. (Updated Victorian Floods)
The past week in Australia has been a tough one. For those of you who don't know, the state of Queensland is experiencing shocking floods. 75% of the state has been declared a disaster zone. An area the size of France and Germany combined is under water and the floods are no where near over. Town after town inundated. An inland tsunami, an 8m wall of water, bore down on a valley with no warning and the death toll is climbing. The state capital, and third largest city in the country, Brisbane, is being consumed by the unrelenting waters. Pictures and stories out of the area are heartbreaking. Families swept away. The young 13 year old boy who told rescuers to take his younger brother first and lost his life in the process. So many people still missing. I'm lucky I can turn off the TV or flick over to something fluffy. The people in those areas can't and will be living the nightmare for months to come.
Australia is a large country but we have a small population. Most people have family or friends affected by this disaster. We are lucky. We have family in both Brisbane and country QLD, but they are safe. My in laws are cut off. Their town can only be reached by air and basic supplies are running out. Mind you my FILs wine order came through on a plane. There may be no bread, or milk, or petrol, but at least he has the essentials. Sometimes you have to focus on the little absurdities and laugh, or the whole situation becomes overwhelming.
Ironically, on the other side of the country in Western Australia, they are battling bush fires. Here in the far south of the country we are having unusual tropical humidity (the coating on my tablets actually melted off with the moisture in the air). We are a country of extremes.
If you can help in any way there are relief funds set up. If you are unable to donate cash, say a little prayer for those who have lost loved ones and homes, and the emergency personal and volunteers who risked their lives at the height of the crisis and will continue to help others as the floods spread. It's important to realise that after weeks of flooding, there are still towns bracing for the floods to hit. In those areas where the waters are finally receding and the clean up begins, water born and mosquito born diseases are a real risk.
The official fund for donations can be found here:
Premiers Flood Relief Appeal
If you want to donate to help out the animals affected by the crisis you can donate to the QLD RSPCA here:
RSPCA
Etsy Appeal
The flash flood that swept through Toowoomba and the Lockyer Valley.
Here's a link to some pictures of Brisbane's flood. And a link to Grantham, one of the worst hit areas by the flash flood.
My thoughts are with all those affected by the floods.
Michelle
Australia is a large country but we have a small population. Most people have family or friends affected by this disaster. We are lucky. We have family in both Brisbane and country QLD, but they are safe. My in laws are cut off. Their town can only be reached by air and basic supplies are running out. Mind you my FILs wine order came through on a plane. There may be no bread, or milk, or petrol, but at least he has the essentials. Sometimes you have to focus on the little absurdities and laugh, or the whole situation becomes overwhelming.
Ironically, on the other side of the country in Western Australia, they are battling bush fires. Here in the far south of the country we are having unusual tropical humidity (the coating on my tablets actually melted off with the moisture in the air). We are a country of extremes.
If you can help in any way there are relief funds set up. If you are unable to donate cash, say a little prayer for those who have lost loved ones and homes, and the emergency personal and volunteers who risked their lives at the height of the crisis and will continue to help others as the floods spread. It's important to realise that after weeks of flooding, there are still towns bracing for the floods to hit. In those areas where the waters are finally receding and the clean up begins, water born and mosquito born diseases are a real risk.
The official fund for donations can be found here:
Premiers Flood Relief Appeal
If you want to donate to help out the animals affected by the crisis you can donate to the QLD RSPCA here:
RSPCA
Etsy Appeal
The flash flood that swept through Toowoomba and the Lockyer Valley.
Here's a link to some pictures of Brisbane's flood. And a link to Grantham, one of the worst hit areas by the flash flood.
(Update: Queenslanders are slowly cleaning up but many towns are still under threat. Unfortunately, the flood situation is not confined to Queensland, with my home state of Victoria now 1/3 under water. In fact, five states have experienced floods in the past week.
In the past week my family here is Victoria have bee affected by flood waters. Whilst I am safe, many friends and family in the area I grew up in are still under threat. Some areas are experiencing one in 200yr flood events. Overall, this has been the country's worst natural disaster and is far from over. Many thanks to everyone for thier thoughts and prayers over the past week).
My thoughts are with all those affected by the floods.
Michelle
Wednesday, 5 January 2011
The View From My Couch: Heels of Happiness
At first glance this picture doesn't scream happiness or beauty. My legs and feet could easily play the part of Jane Doe No.1 on CSI, with their sexy shades of deathly, bloated purple. But for me it's beautiful. For me it is a reminder that every now and then I can be normal(ish). Every now and then, I can give Bob the middle finger, and live life on my terms, if only for a few hours.
I recently went to a family wedding. Those who read my ramblings on Facebook will be aware of my determination to wear heels to the wedding. It's been four long years since I have been able to wear heels. When you have Bob standing is not your friend. Your balance is non-existent. Even the tiniest heels are akin to walking on stilts. So really, on reflection, deciding to wear heels may not have been the sharpest choice I have made in life.
I practiced for days around my house. Heels with my pjs. Heels with my shorts. Heels when I was sitting down or lying on the floor. I watched my bloated purple feet squeeze out through the holes in the shoes as I did the elegant zombie shuffle whilst furniture surfing around the house. I decided that regardless of the risk of snapping an ankle or flashing the bridal party with my undies when I inevitably went arse up, I was wearing heels. (Thank you to all, including the bride to be, who suggested I wear my best undies, just in case. Rest assured I grabbed out my 'special occasion' undies just for the day). Over the next few days I improved from 'unco zombie' to 'drunken celebrity It girl walking down imaginary steps'. I was proud.
Despite a pulse pressure that dropped down to single digits, days in bed, and visitors, I managed to gussy myself up and put on those heels and head to the wedding. I managed to find enough chairs and luckily have a husband for whom holding me up is second nature, so I didn't flash my undies to anyone. I walked/shuffled around the event, with no one else any the wiser to my weirdness. I may have paid for it big time for the following few days and may not wear heels again for another four years, but I was normal for a few hours and that is precious. Those mottled, bloated and aching legs and feet, squished into that sexy pair of heels are beautiful to me.
Cheers
Michelle :)
Michelle :)
Saturday, 1 January 2011
New Year Thankfulness: Friends From The Ether.
I've never been big on the whole idea of New Year Resolutions, or New Year celebrations for that matter. Why wait for one day in the year to set about making changes in your life? Are the other 364 days in the year somehow resolution-challenged? Why go to the effort to make resolutions that you know you simply wont keep? Resolutions are about small egocentric goals. "I will lose 10 kg", "I will join a gym", "I will give up smoking". Move forward two weeks and you've gained another 2kg, you've already skipped your last three gym sessions and you've decided having only one cigarette with a coffee is enough of a step this year. What is the point?
Where are the "I will endeavour to make the world a better place for all, one small step at a time" goals? They seem non-existent these days. Maybe it's just that I'm getting old and jaded. Maybe it's my severe case of bah humbug that prevailed over most of December this past year. Maybe I just need to find my elusive happy place. I think it's a little like Narnia. Except my wardrobe is shaped a little more like this.
If I am to make a resolution this year (and I can feel every fibre in my body rebelling as I type) it is to make a conscious effort to be thankful.
Give me an hour of your time and I can list off the load of shiteness that has come my way over the last few years, until you too will wish to weep into your Corn Flakes.
That's easy. Finding reasons to be thankful is not.
So today I am starting by saying thank you to all those people who have come into my life over the past four years via this computer screen, most of whom I have never met in the flesh (and could in fact be a greasy middle-aged guy who lives in his mother's basement, collects action figures and can recite the entire works of Shakespeare in Klingon, or Vulcan, depending on his mood) yet make my little world a better place.
Friends from the Lands of Blog.
Blogging has been an unexpected pleasure. Before I became a blogger myself I thought people who talked about their "internet friends" were sad little people who needed to get a life. Now I realise how wrong I was. Friendship comes in many forms and blogging can provide an honesty and openness that you would never find in the real world. It truly is a community. You can put yourself out there, warts and all, and find that you are not a complete freak (well, I guess that depends on your definition of 'freak'. I'm sure there are many who have read my blog who are convinced that I am a complete freak. But that's okay, and I'm pretty happy to embrace my freakdom at this point). The world can seem like a lonely place at times, whether you are ill or not. Blogging is like a life line that wipes away that loneliness and connects you with a whole world full of people and possibilities.
I am always surprised by who reads my ravings. I can be a little out there at times. I tell inappropriate and frequently unfunny jokes. I am yet to have an epiphany or see the light. My grammar and spelling are consistently appaulling. Whilst I truly appreciate the love, I have to wonder, why are you reading people?
I can understand why someone else who has Bob, or another illness, may read what I write simply to be reminded that we all go through the same emotions, symptoms, or issues. Being ill is a lonely business, and often a scary one. Those who aren't ill can provide much appreciated support, but there is a certain level of understanding that can only be found with someone who is, or has been, in a similar position. When you are silly enough to pick an obscure disorder, it is even more fantastic to find others who are in the same boat. Though I do wish we could have picked the boat that sails around the Caribbean, rather the one that floats in the porcelain drain.
But there are also a large number of people who read my blog who don't have Bob or anything even remotely similar. People whose lives are completely removed from my own small sphere of existence. People who are truly lovely and provide support or laughs as needed. People whose own blogs fill me with delight and much needed distraction. People whose writing fills me with awe, or have me snorting my coffee onto my keyboard. People who take the time to connect. People who are genuinely interested.
There are a small group of bloggers that I would truly class as friends. Who make me laugh, and cry. Who give support in the good and bad times. Who simply seem to get it. That fall into that category of people I'd love to have a margarita with one day, or coffee, or margarita and coffee, really I'm not that picky. They are not necessarily people you talk to every day or every week, but when you do it's as if you only saw them yesterday and have known them a lifetime. There are many others that I would love to get to know better. Most are from completely different backgrounds and countries to myself, but somehow something clicks. Somehow you make a connection. There are people out there who are truly lovely. People who I would never have met if it weren't for the blogosphere, and for that I am thankful.
Friends from the Book of Faces.
When you have a weirdo disorder it's damn hard to find anyone else who has it. When I was first diagnosed I hadn't even heard of Bob. Here in Australia there was no support or information. Then along came Facebook. I was convinced by a friend (who is no longer in the picture) to get onto FB. I thought she was nuts, but decided to take the plunge. Now I can't imagine not being on. FB gets a bad rap at times, much of it deserved. But when you are bed or couch bound, it can become your link to the outside world. It has allowed me to meet people from all over the world who have the joy of Bob in their lives. It has provided resources and a sharing of information that I otherwise would never have found.
When I read through my list of FB friends and their information, on the surface it would seem we would have little in common except for being ill. We are all from different countries, different religious backgrounds, different careers, family situations etc. Many who like Twilight (that's just for you Cyndi) or even (shudder) Justin Beiber. Yet there is an underlying similarity that transcends the differences. A view of the world and an ability to laugh in the face of unrelenting crap that is more of a bond than any of the other stuff. A group of people for who there is no sense of TMI. Where you can comfortably discuss the less glamorous side of illness that would make other people blush, or gag, as the case may be. Where you can make totally inappropriate jokes about your health that would have others wondering whether it was time to call the men in white coats, and it's okay. Some of these wonderful people I have known from the start, some are newer friends, but all make this journey a little bit more bearable and I am thankful that I have found them.
When your body is out of commission and your mind is about all you have left (insert joke about my diminishing brain capacity), the internet provides an outlet and a way of interacting in the world that would otherwise be denied us. I for one, am grateful for the friendships I have made and the laughs and support I have been given.
Big Love People. Big Love.
(Next week I get to meet some fellow Bobettes here in fair old Melbourne as we head out for lunch. Very excited to finally meet face to face).
Cheers
The Very Thankful Michelle :)
Groove Armada,My Friend (2001)
Where are the "I will endeavour to make the world a better place for all, one small step at a time" goals? They seem non-existent these days. Maybe it's just that I'm getting old and jaded. Maybe it's my severe case of bah humbug that prevailed over most of December this past year. Maybe I just need to find my elusive happy place. I think it's a little like Narnia. Except my wardrobe is shaped a little more like this.
If I am to make a resolution this year (and I can feel every fibre in my body rebelling as I type) it is to make a conscious effort to be thankful.
Give me an hour of your time and I can list off the load of shiteness that has come my way over the last few years, until you too will wish to weep into your Corn Flakes.
Oh how hath thee crapped on me oh universe, let me count the ways.
That's easy. Finding reasons to be thankful is not.
So today I am starting by saying thank you to all those people who have come into my life over the past four years via this computer screen, most of whom I have never met in the flesh (and could in fact be a greasy middle-aged guy who lives in his mother's basement, collects action figures and can recite the entire works of Shakespeare in Klingon, or Vulcan, depending on his mood) yet make my little world a better place.
Friends from the Lands of Blog.
Blogging has been an unexpected pleasure. Before I became a blogger myself I thought people who talked about their "internet friends" were sad little people who needed to get a life. Now I realise how wrong I was. Friendship comes in many forms and blogging can provide an honesty and openness that you would never find in the real world. It truly is a community. You can put yourself out there, warts and all, and find that you are not a complete freak (well, I guess that depends on your definition of 'freak'. I'm sure there are many who have read my blog who are convinced that I am a complete freak. But that's okay, and I'm pretty happy to embrace my freakdom at this point). The world can seem like a lonely place at times, whether you are ill or not. Blogging is like a life line that wipes away that loneliness and connects you with a whole world full of people and possibilities.
I am always surprised by who reads my ravings. I can be a little out there at times. I tell inappropriate and frequently unfunny jokes. I am yet to have an epiphany or see the light. My grammar and spelling are consistently appaulling. Whilst I truly appreciate the love, I have to wonder, why are you reading people?
I can understand why someone else who has Bob, or another illness, may read what I write simply to be reminded that we all go through the same emotions, symptoms, or issues. Being ill is a lonely business, and often a scary one. Those who aren't ill can provide much appreciated support, but there is a certain level of understanding that can only be found with someone who is, or has been, in a similar position. When you are silly enough to pick an obscure disorder, it is even more fantastic to find others who are in the same boat. Though I do wish we could have picked the boat that sails around the Caribbean, rather the one that floats in the porcelain drain.
But there are also a large number of people who read my blog who don't have Bob or anything even remotely similar. People whose lives are completely removed from my own small sphere of existence. People who are truly lovely and provide support or laughs as needed. People whose own blogs fill me with delight and much needed distraction. People whose writing fills me with awe, or have me snorting my coffee onto my keyboard. People who take the time to connect. People who are genuinely interested.
There are a small group of bloggers that I would truly class as friends. Who make me laugh, and cry. Who give support in the good and bad times. Who simply seem to get it. That fall into that category of people I'd love to have a margarita with one day, or coffee, or margarita and coffee, really I'm not that picky. They are not necessarily people you talk to every day or every week, but when you do it's as if you only saw them yesterday and have known them a lifetime. There are many others that I would love to get to know better. Most are from completely different backgrounds and countries to myself, but somehow something clicks. Somehow you make a connection. There are people out there who are truly lovely. People who I would never have met if it weren't for the blogosphere, and for that I am thankful.
Friends from the Book of Faces.
When you have a weirdo disorder it's damn hard to find anyone else who has it. When I was first diagnosed I hadn't even heard of Bob. Here in Australia there was no support or information. Then along came Facebook. I was convinced by a friend (who is no longer in the picture) to get onto FB. I thought she was nuts, but decided to take the plunge. Now I can't imagine not being on. FB gets a bad rap at times, much of it deserved. But when you are bed or couch bound, it can become your link to the outside world. It has allowed me to meet people from all over the world who have the joy of Bob in their lives. It has provided resources and a sharing of information that I otherwise would never have found.
When I read through my list of FB friends and their information, on the surface it would seem we would have little in common except for being ill. We are all from different countries, different religious backgrounds, different careers, family situations etc. Many who like Twilight (that's just for you Cyndi) or even (shudder) Justin Beiber. Yet there is an underlying similarity that transcends the differences. A view of the world and an ability to laugh in the face of unrelenting crap that is more of a bond than any of the other stuff. A group of people for who there is no sense of TMI. Where you can comfortably discuss the less glamorous side of illness that would make other people blush, or gag, as the case may be. Where you can make totally inappropriate jokes about your health that would have others wondering whether it was time to call the men in white coats, and it's okay. Some of these wonderful people I have known from the start, some are newer friends, but all make this journey a little bit more bearable and I am thankful that I have found them.
When your body is out of commission and your mind is about all you have left (insert joke about my diminishing brain capacity), the internet provides an outlet and a way of interacting in the world that would otherwise be denied us. I for one, am grateful for the friendships I have made and the laughs and support I have been given.
Big Love People. Big Love.
(Next week I get to meet some fellow Bobettes here in fair old Melbourne as we head out for lunch. Very excited to finally meet face to face).
Cheers
The Very Thankful Michelle :)
Groove Armada,My Friend (2001)
Monday, 20 December 2010
Merry Christmas & Happy New Year.
Big love.
Michelle :)
Wednesday, 8 December 2010
Unexpected Packages Equals Unexpectd Joy.
A package arrived in the mail the other day. I had no idea it was on it's way. I had no idea who would be sending me a package when Mr Grumpy handed it over. A quick look at the sender said it was from a fellow blogger here in Oz. I've been following Elizabeth's blog for a while now. She runs a gorgeous boutique here in Melbourne, Fanantique, with beautiful vintage clothing and accessories. She also creates a mean cocktail, loves a champers, and all things Tim Burton, so I already knew she was a top chick. But I never expected such a thoughtful package to arrive.
For a while now I've lamented my inability to travel to meet her in person and attend her recent fashion event (check out some of the gorgeous dresses, Mr Grumpy take note, hint hint) held at a local boutique perfumery, thanks to Bob. So in complete and unexpected lovliness she sent me a package of bits and bobs from her boutique. A case of, if I can't make it down to Bay St, a little bit of Bay St can come to me.
It was such a lovely, and unexpected surprise. There was perfume, hand cream, cards with her art work,and even champagne chocolates to chomp on until I can have a champagne with her in person, to name but a few. There were even Christmas dog biscuits from her local dog bakery for Freyja and Thor. It was such a thoughtful gift and really made my day.
I think my favourite out of all the gifts were two bon voyage cards, one for Bob and one for Jeff. So as you can probably guess I've been beaming. It wasn't so much the gifts themselves, although they are lovely, but the thoughtfulness behind them. It's so nice to know that there really are some truly thoughtful and lovely people in the world. It's also rather nice to be able to write about something joyful rather than the usual woe is me.
Must now go crank up some classic Edith Piaf, splash on some Chanel No.5, and nanna nap with my leopard print eye mask. One of my first purchases when I started getting a regular pay cheque, was a set of gorgeous, and stupidly expensive, ivory silk and handcrafted lace, French lingerie (something I'd always wanted). I wonder if I can get them past my thighs these days? That would complete the mood. Maybe I should just have enjoy some Brie, or a glass of Sauvignon Blanc? Decisions, decisions.
Au Revoir
The very pampered Michelle :)
Mood music, Edith Piaf, La Vie En Rose (1946)
For a while now I've lamented my inability to travel to meet her in person and attend her recent fashion event (check out some of the gorgeous dresses, Mr Grumpy take note, hint hint) held at a local boutique perfumery, thanks to Bob. So in complete and unexpected lovliness she sent me a package of bits and bobs from her boutique. A case of, if I can't make it down to Bay St, a little bit of Bay St can come to me.
(My gorgeous goodies)
It was such a lovely, and unexpected surprise. There was perfume, hand cream, cards with her art work,and even champagne chocolates to chomp on until I can have a champagne with her in person, to name but a few. There were even Christmas dog biscuits from her local dog bakery for Freyja and Thor. It was such a thoughtful gift and really made my day.
(Yummy lip balm and cute little red bird to feed my red addiction.
Okay, I just realised the lip balm is upside down. Damn brain fog.)
Okay, I just realised the lip balm is upside down. Damn brain fog.)
(Eye mask, Turkish Delight perfume and hand cream)
(Freyja giving Thor the death stare whilst I make her wait for her biscuit)
("Hurry up mum and let me have the damn biscuit". Ignore Thor's drool patches on the floor.)
(Mmmm.... buscuit)
I think my favourite out of all the gifts were two bon voyage cards, one for Bob and one for Jeff. So as you can probably guess I've been beaming. It wasn't so much the gifts themselves, although they are lovely, but the thoughtfulness behind them. It's so nice to know that there really are some truly thoughtful and lovely people in the world. It's also rather nice to be able to write about something joyful rather than the usual woe is me.
Must now go crank up some classic Edith Piaf, splash on some Chanel No.5, and nanna nap with my leopard print eye mask. One of my first purchases when I started getting a regular pay cheque, was a set of gorgeous, and stupidly expensive, ivory silk and handcrafted lace, French lingerie (something I'd always wanted). I wonder if I can get them past my thighs these days? That would complete the mood. Maybe I should just have enjoy some Brie, or a glass of Sauvignon Blanc? Decisions, decisions.
Au Revoir
The very pampered Michelle :)
Mood music, Edith Piaf, La Vie En Rose (1946)
Friday, 26 November 2010
Knock On Wood: Two Weeks Post Angioplasty.
(photo)
First of all I should clarify, I didn't have a stent inserted with the ballooning. Current stents are designed for arteries which are structurally different to veins. Stenting is not recommended for jugular veins at present (although some countries are doing it) and complications can arise. Personally I'm quite happy not having a foreign body stuck inside my neck. Jeff is enough to deal with, without adding risks of occlusions, reactions or stents that may go on holidays and travel to your heart.
The procedure I had involves the insertion of a balloon into the vein which is blown up to stretch the walls of the vein to snap the fibers and hopefully stay open with the force of the blood flow. Think of it as your favourite pair of comfy undies with the overstretched elastic. The idea is to go from uncomfortable new tight elastic undies that cut into your muffin top, to blissful lying on the couch, with a piece of cake or bag of Dorritos, no bra, manky ugg boots and over-sized granny undies, comfiness. Hopeful those fibres will stay where they are and not snap back.
Recovery has been slower than I hoped thanks to the fickle nature of Bob. Stupidly I thought I would be fine after a couple of days like a 'normal' person. You'd think I'd learn by now. Everything takes longer to heal with Bob. Hell, even a papercut takes a year and a half to heal with Bob. So why I thought this would be any different I don't know.
The feeling of being punched in the neck and groin is slowly passing and hopefully given another week it'll just be a twinge. I think I may have overdone things a bit in my haste to see if there has been any change to my functioning (eg trying to scrub the bath) which also hasn't really helped things. Plus this pesky pestilence from the monkey boys refuses to give in. Just when I think I have it licked, the bastard raises it's ugly head again. I'm beginning to think it is the Terminator of pestilence. Just when you think you've frozen it with liquid nitrogen and blown it into little pieces, it melts and reforms into weird looking Agent Doggett guy from the X-Files, determined to take out my tonsils.
I went back to my physio for review this week. I have learnt that my anal need to have quantifiable data is a tad unusual. I have given my physio no end of amusement as her first patient to ever request an assessment pre and post a procedure. Apparently, normal patients don't want to sit through fatigue scales, balance tests and the like, they just focus on getting the procedure done. But hell, I've never claimed to be normal.
So the results are in, and I've had improvements. Not, totally cured, going to climb Everest and run the New York Marathon type of improvements, but improvements none the less. I wont bore you with the nitty gritties but simply:
- My balance has improved. Rather than flapping my arms like a mad woman and falling over whenever I try to balance, I actually managed to stay upright on my right leg for 30 sec with minimal arm flappage. Woo Hoo! I'm excited. Big Kev Excited people.
- I was able to walk an additional 57m in the 6min test.
- My strength has improved from wet tissue to soggy soak and maybe even dry sock on my right side.
- My fatigue scores have improved. Not to normal levels but I am less abnormal.
- I still have a marked difference between my right and left side, with the left being consistently pathetic, but both sides have improved. For those who have asked, I still have no idea why I have such a marked difference and my physio could only tell me it was abnormal, but not why.
- My shakiness was drastically improved. Normally if I strain physically (eg stand up) I am like a human Shake Weight. But on review I had minimal shakage.
- Considering it was 32C when I did my review I should have been far worse (it was 24C when I did my first assessment) so that in and of itself says I've had improvement.
Subjectively I've had improvements as well:
- Nausea is still at a minimum. I've had a couple of times where I felt the first strains of nausea welling up (mostly on particularly hot days), but that's it. I'm still bloated, crampy, irregular or way over regular, so the gastric issues are still there, but this one factor is now missing. If this is the only long term effect of having Jeff slapped around I'm pretty stoked.
- Still no migraines (insert me doing a little dance). I've had some headaches but these have been minimal and overall I've had a total of 2 Nurofen Plus in the past two weeks, whereas pre-angioplasty I was eating them like candy.
- I stood up in the shower and washed my hair. To those without Bob this sounds rather unimpressive, but rest assured those with Bob will all be breathing a collective "Whoa" in amazement at such a feat. I haven't done this since I brought my shower chair about 8mths ago, and even before that I used to sit on the floor of my manky shower to wash my hair.
- Apparently I'm sharper. I don't know if I believe this one, but my family, friends and even my physio pointed this out. Normally I have trouble finishing my sentences thanks to permanent brain fog. I have trouble finding words, or even following conversations. This, whilst not back to pre-Bob levels, has all improved. I even spoke to a girlfriend for about 30mins on the phone and managed to stay coherent.
- I've been told I also have a little bit of colour in my face now. Not to be pasty is kind of weird. I'd become very used to rocking pasty chic, so moving from green tinge to normal pale is a novelty that I am quite enjoying.
- My pooling is unchanged.
- My hr and bp have remained pretty at pretty much normal levels of abnormalness (I took multiple readings the week pre and post), though my fluctuations don't seem as extreme and my systolic pressure is generally higher. My hr has been somewhat higher and I've been having more tachycardia.
- Still having issues with heat intolerance, though I do think it has lessened a bit, in that I can do a little more than before even on a hot day and am recovering a little better.
Funny how a little bit of blood flow can make you feel a whole lot better. Damn that brain and it's pesky need to drain.
I will be sending all the pre-post data to my IR and cardio, for their review. I will also be pointing out to the IR that if he has more Bob patients, that he needs to up the drugs, thanks to our tendency to not feel the affects of anesthetics (we're lucky like that). Why I didn't even think of this beforehand I'll never know, you'd think the fact that the local anesthetic barely worked (OW!) when I had my last arterial line would have stayed in my mind, but no brain fog won once more. If I have to have this done again I'll be requesting enough drugs to knock out an elephant, and then some. I will also be asking my IR for some pics so I can show you the new eunuch Jeff.
So I will continue to feel up every piece of wood in my vicinity in the hope that I wont jinx myself by putting my improvements out into the ether. Any additional wood touching anyone wishes to contribute will be more than welcomed.
Cheers
The Un-puking Michelle :)
Knock on Wood, Amii Stewart (1979), what else could I play?
Saturday, 20 November 2010
The view from my couch: Surrounded by furry love.
Michelle :)
Friday, 19 November 2010
The smiting (or at least purple nurpling) of Jeff.
Well hello there. It's been a little while since I last blogged but having someone thread you like a needle and try and inflate the Goodyear blimp in your neck sort of puts a dampener on blogging. Add in that my efforts to teach my offspring to share came back to bite me on the arse, as the ebola riddled monkey boys I call children, decided to share their pestilence. Nothing like having pustule covered tonsils the size of footballs and coughing up a lung to make recovery from surgery a blast. I have spent a lot of the past week coughing and grabbing my groin (the incision site), which is a really good look when you're out in public. Though I did giggle at a fiend who suggested I moonwalk each time to alleviate the awkwardness.
Thanks to all those who sent lovely messages, crossed various body parts and said a prayer to the deity of the choice, it has warmed the little cockles of my heart. Whilst I had hoped to respond individually, I've been a little overwhelmed. So instead I'm sending out a big cyber hug to everyone. Consider yourselves well and truly hugged.
To reiterate for those who haven't the foggiest what I'm talking about. A while back I had a MRI and found out that my left jugular vein was a mutant named Jeff and my brain wasn't draining properly (this is known as CCSVI or Chronic Cerebrospinal Venous Insufficiency). I met with a Vascular Interventional Radiologist (The Balloonman) who said he could put a hit out on Jeff, or at lest slap him around a bit, with a balloon angioplasty. This past Friday I underwent balloon angioplasty to try and sort Jeff out.
The whole day was kind of bizarre, and not one I'd jump to repeat. The waiting sucks. The repeating your history and explaining Bob to every doctor and nurse grows old really quickly. The repeated taking of obs not fun. The old guy coughing up a lung behind the curtain not fun. Hospital TV not fun. Though playing with the electric bed whilst giggling like a two-year-old with your husband was fun.
Angioplasty is not for the for the faint of heart, especially if the drugs don't work. As many of you know I was adamant that I would be requesting copious amounts of drugs to make it through. I also told Mr Grumpy that if I forget to mention my desire for pharmaceuticals, he was to tell every nurse and doctor that came within ear shot that I wanted drugs. I may or may not have threatened that he would be singing castrato if he failed in this duty. At my meeting with The Balloonman a couple of weeks before I was assured that I would be drugged up on "Jungle Juice". A magical elixir that would allow them to talk to me throughout but would leave me with no memory of the event.
LIAR! May your pants be forever on fire.
The drugs didn't work. I kept lying there the whole time thinking,
"It's all okay. I wont remember anything. Yes my lady bits are on show in a room full of strangers. But I wont remember a thing. Yes it hurts like hell. But I wont remember. I wont remember."
But dammit I do. Every last second of it.
I remember lying on the table and the nurse lifting up my gown in front of a young male doc and saying, "your groin looks good". Which was then followed by her coming back and exposing me to the same guy again, plus a number of other nursing staff and various doctors, and deciding I needed a shave. All of which has left me looking like I chickened out of a bikini wax half way through. A bikini wax which apparently was done by a blind woman with the DTs. Though I shouldn't complain. A girlfriend who had the same procedure was asked by the male doc if she wanted a star or a love heart when it was decided she needed a further trimming. Go doctor humour. Way to ease the tension. An added bonus is that I have had the usual skin reaction to bandage adhesives and have a super sexy square of red, itchy and welted groin going on at the incision site. Fanbloodytastic.
I remember the sadistic overuse of local anaesthetic in my groin, by stabby man. At that stage I was trying to maintain my ladylike persona and swallowed down my expletives, later on I was not so worried about minding my manners and the odd F-bomb may have been uttered. Despite my issues being up in my neck, they insert the wire and balloon down in the groin at the femoral vein and then thread it all the way up to the jugular. I do think I might suggest to them that the cut could be made either an inch up or down from the crease where your leg joins your torso, as this is where your undies seam sits and rubs the hell out of the incision point. Ow. I most certainly remember the series of directions required to thread the wire up through my body and the weird pressure.
I remember looking up at the machine they place over your neck to scan the vein whilst they play around. I remember staring at the plastic wrapped machine that had the word Siemens written on it, and thinking up a myriad of dirty jokes (classy I know). This was the machine that took x-rays the whole time whilst they shot me up with a contrast dye to map the veins (venograph), and ballooned. I will say thinking up dirty jokes is a good way to distract yourself from reality.
I remember being told to turn my neck in various directions to best position the balloon. Apparently turning it to the left squished it up. Apparently staying still is vital as I was told this numerous times. Might I add excruciating pain is not conducive to staying still and I may have thought about telling them to "bite me", should they say it once more.
I remember the crackling sound as they inflated the balloon. It's rather weird hearing a sound like someone is crumpling up cellophane coming from inside your body.
I definitely remember pain. Whilst doing the part of my jugular which resides in my neck hurt, it was nothing compared to when they went higher up to the jugular bulb. I now know what it must feel like if you were to accidentally stab yourself in the ear with a javelin that had been dipped in lava and glass shards. I'd definitely advise against trying that one at home kiddies. This may have been a time of F-bombs. I was warned that pain was the gauge they use to measure how close they are to tearing your jugular, which I was happy to hear they wanted to avoid. But holy hell. There are no swear words to adequately describe that pain. Unfortunately Jeff was rather tight and resistent to stretching so the biggest they could do was 7mm wide which is still far less than normal size (12mm is about average).
I remember chest pain throughout most of the procedure (and for about three days after). Luckily the lava and glass covered javelin stuck in my ear took my mind off my chest pain.
I remember being shown the scans post-ballooning. Loads of scans. Unfortunately the nature of Jeff meant that they were unable to do as much as they wanted. The risk of tearing the vein was too great and part of it was compressed by my carotid. It is opened up more, just not as far as they had hoped. Turns out the blood was trying to force it's way unsuccessfully out collateral veins that had grown around the stenosis and out my vertebral plexis. The Balloonman was not overly hopeful that they had achieved much.
Not being able to get up to pee for 2 hours after was a challenge thanks to my acron sized baldder. The nurse told me that I could get up and pee at 5pm and I counted down every last minute. At 4.50pm I begged the nurse to let me go, and after a quick set of obs I was allowed the blessed pee. It was bliss I tell you, pure bliss.
To top off my fun day as I was leaving my right arm vasospasmed and turned black the whole length. I've had dark pooling before but nothing like that. Luckily it cleared up after about half an hour, but not before The Balloonman had been called back over, though he did pay for our parking, bonus! Oh, and he also checked the file and said I had enough drugs pumped into me there's no way I should remember, so really I guess I'm just lucky.
So whilst the smiting of Jeff was not 100% successful, I like to think he is at least living life as a eunich. What that means long term I don't know. Whether he'll come back I don't know, but it is a risk.
It's been a week now and I can say I have felt some improvements, though I am busily running around touching wood (the tree variety for those with a dirty mind, which means you Mr Grumpy). So far the changes I've noticed are:
I never saw de-Jeffing as a cure for Bob, but I am happy with the changes I have seen. For me it's been more an issue of alleviating any excess disability. Given how I have been feeling since, it seems Jeff has been exacerbating my symptoms. A week before my ballooning I saw my physio and had an assessment, completed fatigue scales and an autonomic symptom scale. Next Monday I see her again to see if there has been any quantifiable change. By then I should be over this bug and the affects of the procedure itself (pain and fatigue) so I should have a clearer idea.
Most of the literature surrounding CCSVI is related to MS, but just today I saw a Youtube video of a guy with Lyme disease who had been diagnosed with CCSVI and had the angioplasty. Interestingly a lot of the symptom relief he talked about I have also had. Apparently there are about 5 Lyme patients who have had this done now. There are currently studies being conducted to determine if CCSVI exists in patient groups other than MS, and the results of angioplasty in these groups. So far I'm the only person I know of with Bob to have it done, which is kind of exciting and kind of scary. I'm not suggesting that others go out and get tested for this, for me it only became an option after I was out of all other options, but I will say for me it seems to have helped some of symptoms. Only time will tell how permanent the changes are, but until then I will be madly touching wood at every opportunity and marveling at the dust gathering on my puke bags.
Cheers
Michelle :)
So just for Jeff, I give you the Honeymoon Is Over, Tex Perkins and The Cruel Sea.
Thanks to all those who sent lovely messages, crossed various body parts and said a prayer to the deity of the choice, it has warmed the little cockles of my heart. Whilst I had hoped to respond individually, I've been a little overwhelmed. So instead I'm sending out a big cyber hug to everyone. Consider yourselves well and truly hugged.
To reiterate for those who haven't the foggiest what I'm talking about. A while back I had a MRI and found out that my left jugular vein was a mutant named Jeff and my brain wasn't draining properly (this is known as CCSVI or Chronic Cerebrospinal Venous Insufficiency). I met with a Vascular Interventional Radiologist (The Balloonman) who said he could put a hit out on Jeff, or at lest slap him around a bit, with a balloon angioplasty. This past Friday I underwent balloon angioplasty to try and sort Jeff out.
The whole day was kind of bizarre, and not one I'd jump to repeat. The waiting sucks. The repeating your history and explaining Bob to every doctor and nurse grows old really quickly. The repeated taking of obs not fun. The old guy coughing up a lung behind the curtain not fun. Hospital TV not fun. Though playing with the electric bed whilst giggling like a two-year-old with your husband was fun.
Angioplasty is not for the for the faint of heart, especially if the drugs don't work. As many of you know I was adamant that I would be requesting copious amounts of drugs to make it through. I also told Mr Grumpy that if I forget to mention my desire for pharmaceuticals, he was to tell every nurse and doctor that came within ear shot that I wanted drugs. I may or may not have threatened that he would be singing castrato if he failed in this duty. At my meeting with The Balloonman a couple of weeks before I was assured that I would be drugged up on "Jungle Juice". A magical elixir that would allow them to talk to me throughout but would leave me with no memory of the event.
LIAR! May your pants be forever on fire.
The drugs didn't work. I kept lying there the whole time thinking,
"It's all okay. I wont remember anything. Yes my lady bits are on show in a room full of strangers. But I wont remember a thing. Yes it hurts like hell. But I wont remember. I wont remember."
But dammit I do. Every last second of it.
I remember lying on the table and the nurse lifting up my gown in front of a young male doc and saying, "your groin looks good". Which was then followed by her coming back and exposing me to the same guy again, plus a number of other nursing staff and various doctors, and deciding I needed a shave. All of which has left me looking like I chickened out of a bikini wax half way through. A bikini wax which apparently was done by a blind woman with the DTs. Though I shouldn't complain. A girlfriend who had the same procedure was asked by the male doc if she wanted a star or a love heart when it was decided she needed a further trimming. Go doctor humour. Way to ease the tension. An added bonus is that I have had the usual skin reaction to bandage adhesives and have a super sexy square of red, itchy and welted groin going on at the incision site. Fanbloodytastic.
I remember the sadistic overuse of local anaesthetic in my groin, by stabby man. At that stage I was trying to maintain my ladylike persona and swallowed down my expletives, later on I was not so worried about minding my manners and the odd F-bomb may have been uttered. Despite my issues being up in my neck, they insert the wire and balloon down in the groin at the femoral vein and then thread it all the way up to the jugular. I do think I might suggest to them that the cut could be made either an inch up or down from the crease where your leg joins your torso, as this is where your undies seam sits and rubs the hell out of the incision point. Ow. I most certainly remember the series of directions required to thread the wire up through my body and the weird pressure.
I remember looking up at the machine they place over your neck to scan the vein whilst they play around. I remember staring at the plastic wrapped machine that had the word Siemens written on it, and thinking up a myriad of dirty jokes (classy I know). This was the machine that took x-rays the whole time whilst they shot me up with a contrast dye to map the veins (venograph), and ballooned. I will say thinking up dirty jokes is a good way to distract yourself from reality.
I remember being told to turn my neck in various directions to best position the balloon. Apparently turning it to the left squished it up. Apparently staying still is vital as I was told this numerous times. Might I add excruciating pain is not conducive to staying still and I may have thought about telling them to "bite me", should they say it once more.
I remember the crackling sound as they inflated the balloon. It's rather weird hearing a sound like someone is crumpling up cellophane coming from inside your body.
I definitely remember pain. Whilst doing the part of my jugular which resides in my neck hurt, it was nothing compared to when they went higher up to the jugular bulb. I now know what it must feel like if you were to accidentally stab yourself in the ear with a javelin that had been dipped in lava and glass shards. I'd definitely advise against trying that one at home kiddies. This may have been a time of F-bombs. I was warned that pain was the gauge they use to measure how close they are to tearing your jugular, which I was happy to hear they wanted to avoid. But holy hell. There are no swear words to adequately describe that pain. Unfortunately Jeff was rather tight and resistent to stretching so the biggest they could do was 7mm wide which is still far less than normal size (12mm is about average).
I remember chest pain throughout most of the procedure (and for about three days after). Luckily the lava and glass covered javelin stuck in my ear took my mind off my chest pain.
I remember being shown the scans post-ballooning. Loads of scans. Unfortunately the nature of Jeff meant that they were unable to do as much as they wanted. The risk of tearing the vein was too great and part of it was compressed by my carotid. It is opened up more, just not as far as they had hoped. Turns out the blood was trying to force it's way unsuccessfully out collateral veins that had grown around the stenosis and out my vertebral plexis. The Balloonman was not overly hopeful that they had achieved much.
Not being able to get up to pee for 2 hours after was a challenge thanks to my acron sized baldder. The nurse told me that I could get up and pee at 5pm and I counted down every last minute. At 4.50pm I begged the nurse to let me go, and after a quick set of obs I was allowed the blessed pee. It was bliss I tell you, pure bliss.
To top off my fun day as I was leaving my right arm vasospasmed and turned black the whole length. I've had dark pooling before but nothing like that. Luckily it cleared up after about half an hour, but not before The Balloonman had been called back over, though he did pay for our parking, bonus! Oh, and he also checked the file and said I had enough drugs pumped into me there's no way I should remember, so really I guess I'm just lucky.
So whilst the smiting of Jeff was not 100% successful, I like to think he is at least living life as a eunich. What that means long term I don't know. Whether he'll come back I don't know, but it is a risk.
It's been a week now and I can say I have felt some improvements, though I am busily running around touching wood (the tree variety for those with a dirty mind, which means you Mr Grumpy). So far the changes I've noticed are:
- I haven't had nausea (well except for when I ate jam, which is rather dumb when you have issues with fructose, but it looked so good) or vomited since before the procedure. This is rather huge as this has been one of my worst symptoms and has been resistant to every drug and dietary change I have made. I haven't had a day free of nausea since I first became ill. So one week nausea-free is a bit like winning the lottery.
- I haven't had a migraine since. Normally I eat pain killers for migraines and headaches. Especially, getting the boys bug should have sent me into migraine hell. Even my headaches have been minimal.
- I can read 12 font without my glasses. I haven't been able to do that since.....well I can't remember when. Overall my vision seems crisper.
- I stood up in the shower and washed my hair today. This is huge. I've had a shower chair for quite a while now and before that I would sit on the floor of my manky shower. In particular, raising my arms above my head is difficult at the best of times as they go numb pretty much immediately and it seems to set off my other symptoms.
- I've been sharper mentally, well at least that's what the rug rats and Mr Grumpy tell me. I'm not sure myself, though I was able to talk on the phone for about half an hour and remain coherent. I usually have heaps of trouble following a conversation on the phone and find it quite exhausting.
I never saw de-Jeffing as a cure for Bob, but I am happy with the changes I have seen. For me it's been more an issue of alleviating any excess disability. Given how I have been feeling since, it seems Jeff has been exacerbating my symptoms. A week before my ballooning I saw my physio and had an assessment, completed fatigue scales and an autonomic symptom scale. Next Monday I see her again to see if there has been any quantifiable change. By then I should be over this bug and the affects of the procedure itself (pain and fatigue) so I should have a clearer idea.
Most of the literature surrounding CCSVI is related to MS, but just today I saw a Youtube video of a guy with Lyme disease who had been diagnosed with CCSVI and had the angioplasty. Interestingly a lot of the symptom relief he talked about I have also had. Apparently there are about 5 Lyme patients who have had this done now. There are currently studies being conducted to determine if CCSVI exists in patient groups other than MS, and the results of angioplasty in these groups. So far I'm the only person I know of with Bob to have it done, which is kind of exciting and kind of scary. I'm not suggesting that others go out and get tested for this, for me it only became an option after I was out of all other options, but I will say for me it seems to have helped some of symptoms. Only time will tell how permanent the changes are, but until then I will be madly touching wood at every opportunity and marveling at the dust gathering on my puke bags.
Cheers
Michelle :)
So just for Jeff, I give you the Honeymoon Is Over, Tex Perkins and The Cruel Sea.
Saturday, 13 November 2010
Balloon Update
Hi there, Mr Grumpy here - a number of readers asked for an early update.
Just a quick note to let you know the angioplasty procedure went well yesterday. Michelle is resting well, though sore. First balloon was 5mm x 10cm and the second 7mm x 6cm. The only *issue* was that the twilight anaesthetic did not knock her out so she was awake throughout. There was only one F-bomb dropped during one balloon inflation - the room full of students sniggered quietly at that.
So Jeff is in dire straights though further testing will be needed to make sure Jeff is dead.
Michelle will be back with you soon.
Cheers,
Mr Grumpy :|
PS If you want to help out the fund raising for research into Prostate Cancer and Depression a great cause has been established in Australia - Movember. I am in a team and you can read all about it and donate at: http://au.movember.com/mospace/1032588/ any and all help will be greatly appreciated.
Thanks in advance, Mr G.
Just a quick note to let you know the angioplasty procedure went well yesterday. Michelle is resting well, though sore. First balloon was 5mm x 10cm and the second 7mm x 6cm. The only *issue* was that the twilight anaesthetic did not knock her out so she was awake throughout. There was only one F-bomb dropped during one balloon inflation - the room full of students sniggered quietly at that.
So Jeff is in dire straights though further testing will be needed to make sure Jeff is dead.
Michelle will be back with you soon.
Cheers,
Mr Grumpy :|
PS If you want to help out the fund raising for research into Prostate Cancer and Depression a great cause has been established in Australia - Movember. I am in a team and you can read all about it and donate at: http://au.movember.com/mospace/1032588/ any and all help will be greatly appreciated.
Thanks in advance, Mr G.
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