ITP.net

Experiment shows cultural differences online

“Tourism sites will see the uplift in conversions by creating sites specifically designed towards individual cultures’ preferences. By not optimising for and catering to international users of the internet, official destination sites are not only losing valuable traffic to their sites, they are also inadvertently sending those searchers to other sites which may not offer valuable, impartial advice.”

As has become habit over the past couple of years, this past week I headed over to the NYU Interactive Telecommunications Program Winter Show. ITP is a graduate program started by Red Burns with a mission to “explore the imaginative use of communications technologies — how they might augment, improve, and bring delight and art into people’s lives.” While not as robust as last year’s Spring Show (due to the fact that the Spring show is often a display of many of the grad students’ master theses), the Winter Show definitely lived up to ITP’s vision of producing imaginative uses of tech.  I’ll share some of my favorite projects.

As would be appropriate, the first project on display when you walked into the show was ITP Guest Book, a web project meant to be accessed via an iPhone or iPod Touch that helped show goers leave comments on specific projects and navigate the space via a built in map and project categorization system.  While I loved the concept, I didn’t really find myself utilizing the app, preferring to organically navigate the space and save my commenting for the blog, where I could leverage a bit more of a hindsight view of things.

Many of the show’s projects were less utilitarian of course, with a whole slew that fell on the more artistic side of the technological spectrum.  My absolute favorite in the arts category was tek(s)nesonic, which featured a projected screen which captured those that walked in front of a camera and then mapped falling letters and numbers (which viewers could enter themselves) into the image, each of which were associated with different sound samples.  People who found themselves in the frame could then interact with the falling characters, “catching” them and activating the associated sounds.  I found myself delighted when a P would land on my shoulders and start beeping until I moved and it continued to fall.  Ingenious.

Also featured in the “delightful interactive art” category was Dynamic Ground, which featured some neato “floor tiles” which expanded and contracted when stepped on.  Could definitely see this as an incredible museum installation in which an entire room’s floor shifted and danced, so to speak, in response to people’s movement.  Check it out below. (video courtesy of the project’s creators)

On the more serious side of things, the ITP show often features projects with a political or pro-social bent, and my favorite of these was called The Bed, which was a dynamic data visualization of conflicts around the world. Faux blood would drip down onto a projected map of the world in places where conflicts are occurring, or, at least, in places where the media has decided to report on conflict.  The “drips” were based on feeds from news organizations that were pulled into and analyzed by a semantic computer program that looked for words associated with conflict.  I didn’t get to watch it develop over time, seeing it at the very beginning of the show when it started creating its visualization, but even then there were already multiple conflict zones mapped in the Middle East, with only one in all of Africa.  I think the project really portrayed well how perceptions of global conflict are shaped (and skewed) by a news media that is highly selective and not necessarily fully representative of events happening across the globe.

One project that particularly spoke to me was another data visualization (these types of projects were definitely well represented at the show) not of geopolitics but rather of energy use.  It was called Energy Informatics, and the goal of the project was to make tangible how energy usage changes over time in the places most relevant to us: our residences.  Using  NYU residence halls as an example, the visualization overlaid a translucent color map onto a real image of the building.  The color map would change over time representing how energy usage in the halls went up and down over the course of the day.  I definitely think that this type of visualization will become increasingly important over time.

The final project I’ll share which struck my fancy was called Online|Offline ChessGame.  I mainly loved it because it was a new take on an old idea: correspondence chess.  In the project, each of the players uses a physical chess pieces and board just as they would in a standard game, but one that was modified to allow for play at a distance.  The board would indicate what moves an opponent is making, allowing a person to move those pieces to maintain a physical setup of where the game is at.  As the possibility of chess play over a distance became more viable than ever with the advent of the internet, much of the physicality of the game was lost with people playing on screens.  I’m all for technology that allows us the advantages that advanced telecommunications makes possible, without the need to sit and stare at a screen for hours.

Overall, some really great projects at the show.  Congrats to all the participants.

See here, and below, for my full photoset from the show.

He sees you when you’re bleeding

He knows when you’ve put on weight

He knows if you’ve been sick or tired

And he knows… how to whip your platelets up into a frenzy of 100 plus numbers!!

My platelets were 108 yesterday – yes ONE HUNDRED AND EIGHT, and to top things off with a card and a bow, they reached that level without an infusion of Octagam and it was 44 days since my last infusion.

Could it be the Mona Vie? Or maybe the fact that I have stopped drinking around 4 cans of Pepsi Max and all the aspartame that provides each day? Or maybe it’s the Dapsone or the Mabthera or maybe I’m just going into remission?

Who knows, who cares?

Happy Christmas to me.

Merry Christmas and a fabulous, fun-filled, happy and HEALTHY 2010 to everyone.

And now to do that last minute shopping.

love

Nic(ole)x

Ce facem maine?!

Pai se ia una bucata masina si facem deplasarea la job (unde nu cred ca vom munci), dupa care aterizam pe la magazinu’ Unirii sa cautam cadouri pentru cei dragi. Terminam cu magazinu’ Unirea si dam fuga sa luam painica (vreo 10 la numar – deh, bagam ca spartii in noi) si aterizam la domiciliu unde ne apucam de curatenia de Paste… a, pardon, Craciun. O sa ma bag in pat, o sa ma trezesc si o sa impodobesc bradul (ala sintetic, ca de natural nu am bani, sunt sarac). O sa il astept pe mosul ala sa vina cu cadoaie.

In timp ce il astept pe mos o sa ma pun pe treaba: fac mixul promotional pe decembrie 2009, ultimul de pe anul asta. Sper sa fie ascultareti. Va platesc sa il ascultati.

Ah: masina mea a luat ITP-ul! Fara spaga, fara probleme (ma rog: 2 micute care se vor remedia in 2010). Sunt mandru de Barzaune.

Maine seara va prezint planul si doleantele pe 2010.
E o traditie de-a mea. De fiecare data cand mi-am stabilit obiective pentru anul nou, mi s-au indeplinit o mare parte din ele si consider ca e o un lucru pe care nu trebuie sa il evite niciunul dintre noi.

Mi-e somn! Nu stiu de ce sunt din ce in ce mai obosit de la o vreme…

On Monday afternoon I went to have a quick look at the ITP winter student show. Here was a musical project that caught my eye. Perfect for synaesthetes, the interactive sound triangle matrix by MinWoo Bae uses triangular die to generate colour-coded musical notes.

ITP – dubbed the centre for the recently possible – stands for Interactive Telecommunications Program, a masters program at NYU. It’s where artists learn to work with technology and techies to be more arty.

ITP has a special significance for me. In July 2008, when I came to visit NYC for the first time in years, my first stop was ITP’s Broadway loft space to have lunch with Clay Shirky (ITP faculty, Internet guru, inspiration). I think that was the moment I decided to come back here to live.

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IMAGES:  Interactive sound triangle matrix from Matt Mett’s flickrstream (via Make: Online). For more images see Tom Igoe’s flickrstream.

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For photographs from ITP’s Spring show 2009 see my flickrstream.

Azi m-am dus impreuna cu taica-miu sa las masina pentru o mica verificare si pentru ITP. Am luat dupa mine talonul, permisul, RCA-ul si am purces la drum. Am lasat masina in service, am salutat lumea si m-am carat spre job. N-ajung bine ca imi suna telefonul. Era tata.

T: Ce faci, ma, ai ajuns?
E: Da.
T: Ia zi, unde e cartea masinii?
E: AAaaa… cartea?!
T: N-ai luat-o?
E: Aaaa… nu, e acasa.
T: Bravo.
E (nesimtit): Te duci tu sa o iei?
T: Da.

Am intrat in pamant de prost ce sunt. Eu, ala care stiu cat de cat ceva despre masini, sa nu iau cartea de identificare a masinii… Crunt. Imi merit soarta de tantalau.

Ne pregatim de 2010… eu am o lista scrisa pe hartie igienica – nu de alta, dar sa nu ma confrunt cu problema lipsei de foi.

The material for this blog post has been provided by Sayan Bahattacharya, a participant on the ITP in 2009. All the text and photos are by Sayan, seen here on the right.

National Seminar: 
Centre for Archaeological Studies & Training, Eastern India organized a National Seminar on Cultures of the North East India: Ethnic and Archaeological Background” between 5^th & 7^th November,2009 in Collaboration with Indian Museum , Kolkata. This Seminar was contributed immensely to the development of archaeology in India. It will help researchers working on the region (North East India) to organize their understanding on the basis of various new and old finds. We have invited 35 speakers for this seminar from the various parts of India and Bangladesh. Eminent scholars as well as young upcoming researchers from all over India have participated in the Seminar. We have also published our annual newsletter in the seminar. The Seminar was divided into various sessions like- History of Archaeology in Northeast India, Archaeology of Identity and Representation, Quaternary Geology, The Stone Age, Understanding the hiatus between pre-history to history, Megaliths: Past and Present, and The Historical Record, Ceramic Traditions, Specific problems. I have organized this seminar with the help of my colleagues. 

Museum Reforms Project:
The project entitled Museum Reforms is funded by the Indian Museum Kolkata and Ministry of Culture, Government of India. The project revolves around the importance of comprehensive study on the various problems and prospects of the museums in India through a global perspective. This part of the project has started from the month of October, 2009. I am supervising this project with Mr. Debanjan Mitra, Miss.Kazima Khan and Miss. Rupsa Munsi as project assistants. This part of the project aims to compile all the data that can be found over the internet and published documents. The research is done with a scientific approach which reflects in the methodology employed. Presently we are working on three modules-

1. Collection and Store Managements
2. Museum Shops and Souvenirs
3. Attract various Audience Segment, including Students/Children.

Street Children activities: 

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 The Centre for Archaeological Studies and Training, Eastern India has collaborated with the State Archaeological Museum West Bengal to materialize the Street Children activity programme within the State Archaeological Museum.

The first phase of the said programme was commenced on 23^rd November 2009, at the State Archaeological Museum, Behala. About 30 street children of an age group of 10-15 years participated in the program.

They were involved in various activities, which can be categorized as:

• Creative
• Interactive &
• Learning

All of them have been provided with the necessary equipments and materials, including a bag. To encourage the children, the organizers also awarded the best three creations, in both the categories.During the entire program the organizers were constantly in interaction with the children, elucidating the museum items and enlightening the juvenile minds with the heritage of their nation.

In the first category there was a drawing and clay-modeling competition, where the participants were encouraged to recreate the artifacts and the other exhibited items in the museums, in their drawings and clay models.

The Centre for Archaeological Studies and Training, Eastern India has conducted a learning session for the children. The objective was to introduce the fundamentals of archaeology and the human past.  It was aided with animated videos to make the subject more lucid to them. The session was highly interactive in nature. In this context, it must be mentioned that all the participants have been provided with Bag, lunch and refreshments.

The organizers have a definitive plan to carry forward this program at regular intervals, in order to raise the consciousness of the commoners regarding the human past and their nation’s heritage.

I have actively participated and lectured in the above programme.

Explorations:

The dune ridge complex along the Medinipur coast is important geomorphic features which were related to sea level changes in the past. The dune ridge runs from the Subarnarekha River in the east and the Rasulpur River in the west. Preliminary geoarchaeological research has been conducted in the region by CAST in collaboration with the Marine Wing GSI. Mr. Kaushik Gangopadhya and I explored the area in March 2009.

Exploration at Kotasur and surrounding places (near Manikarnika River), Birbhum, West Bengal as a part of my PhD research programme in November, 2009.  During my exploration I have clicked few photographs which I would love to share with my friends- 

Paper Presented:  

2009: Presented a paper on “Cultural Resources and Heritage means of Indic Studies Interaction between Children and Museum” in the International Indology Conference (Tradition and Modernity in Indian Culture, Indology & Education about India) supported by the Indian Council for Cultural Relations (ICCR), Sofia University, Bulgaria and Indian Mission between 25 & 26^th September,2009 in Sofia, Bulgaria. The participation was supported by the Indian Council for Cultural Relations (ICCR).

 Meeting/Workshops attended:

I have participated in a meeting with the Director General, Archaeological Survey of India and his team in Delhi with regard to discussion on future collaboration of the Centre with Archaeological Survey of India.

I have attended a Workshop on Museum Reforms organized by the Ministry of Culture, Government of India as a Resource person in Indira Gandhi National Centre for Arts (IGNCA) New Delhi on 2^nd November, 2009.

My platelets were 40 today, again, still, just like they were on Monday!

Gotta love that!

I know 40 seems low as we all now know the norm is 150 – 400, but for me staying at the same rate and being 40 thirty-one days after my last infusion, it’s bloody amazing.

Something seems to be working  and it could be the lack of aspartame in the form of Pepsi Max or it could be the dapsone or the Mabthera or the Mona Vie or it could just be my bloody body saying “enough is enough is enough”!

Don’t know, don’t care but am pleased it is happening so close to Christmas.

I go back next week – on Wednesday.

Now, what to do with all my spare time today? I was planning on a day of infusions… An assignment perhaps – doesn’t seem to be the right way to celebrate great news but alas with all my trips to and from the hospital since the beginning of July my course work has suffered but am still aiming to finish by 22 March 2010 and then I will have my real estate licence (not that I would EVER work as an agent – not after watching Mum do it for the last 30 years, it’s dog eat dog and there’s never enough dog to go around!). Mum is, of course, a fabulous, skilled, honest agent with integrity and amazing negotiating skills. They are rare!

But I am going to be an Auctioneer – that is the plan. Then I can work hours that suit my body – bloody RA.

Might also go and buy some more Christmas lights – the competition is fierce here this year. Went out the front to view our apartment block and some of the neighbours homes resemble the Griswalds – we almost wet ourselves laughing when we saw our lights – we could see one light, not one string of lights, not one large light , no, just one globe. That was it. One globe glowing in the hedge. Everyone congratulated me on a fine effort and assured me I was a shoe in to win the prize this year.

Bye for now

Nic(ole)

Nicole Bradshaw BA RA (1st Class Hons) ITP (Hons) DVT (Hons)

In “When TV Became Art,” Emily Nussbaum correlates the popularity of programs containing non-linear plotlines and spastic chronology (Lost, Flashforward) to the growing penetration of DVRs.  In this sense, the narrative world of television adopted and mimicked the behavior that time-shifting devices encouraged.  As television-viewing rituals evolved, the structural and artistic elements of entertainment content followed suit.  This makes me wonder what the future of television and its related technologies will look like as programs become even more nuanced and demanding of audiences. 

Early this week, Boxee, a social, streaming media center, unveiled several television model-busting applications for its service.  The one that piqued my interest the most because it directly relates to product placements, was Qurious, (pronounced “curious”) an app that instantly pulls up information on the actors, songs, topics and products featured on screen.  Qurious was developed by students from NYU’s Interactive Telecommunications Program and brilliantly demonstrates a reconceptualized form of viewer interactivity.  Watching television will turn into a more involved experience which emphasizes a structure of engagement that goes far beyond the oft-used recall metrics. 

To maintain this level of interactivity and engagement, program content will have to become increasingly multifaceted, transcendent and subtle.  Blatant, spoon-fed information and marketing messages will flounder in this television environment because with knowledge-generating technology, audiences will want to seek out information and deconstruct their entertainment.  Curiosity is a form of engagement.  I can picture the wealth of real-time data that an application like Qurious can provide advertisers as viewers perform search queries.  The contemporary television-watching experience does not start and end with the television itself as it now extends to an anytime, anywhere activity.

My god! Its full of STARS!!!!

Last Friday was the Big Screens show for Winter 2009. It was hosted at the IAC in the meatpacking district and several ITP students worked in teams and on their own to produce some of the most amazing imagery I have ever seen. Truly mindblargling. The canvas that they were able to use was the 120 foot long screen at IAC that spans the entire length of their lobby. The sheer scale of the screen gave the students the chance to tell stories on a level that few ever get to realize, and since hundreds of people attended the event, their messages were seen, heard, and felt by many people. I got a sneak peek of the pieces a couple days early at their rehearsal, and it was even more moving then to see them, since there weren’t so many people around. It was special. The class, Big Screens, is taught by Daniel Schiffman, codemaster extraordinaire, and he couldn’t have been more proud of the impact his class had on the local art scene that night. Surely, the pieces that were shown could tantalize and entertain in other venues, so I look forward to the artists and creators getting plenty of press and replay of their material elsewhere. However, I can’t think of a better, bigger screen that they could have made their big debut on. Congratulations to the entire class! I am definitely looking forward to coming back each year to see just how much larger the imaginations represented on the screen grow over time. Please excuse any granularity in the pictures because of a use of high ISOs and a semifast shutter: I wanted to capture as much motion as I could without bouncing a flash on the reflective screens. And now, consume nothing but beautiful imagery with your eyes from some of ITPs most talented artists!

Project 21 by Anthony Ptak

Moonflight by Jayoung Chung

Big Screams by Elie Zananiri

Momentary by Eyal Ohana & Elizabeth Fuller

Rain by Lina Maria Giraldo

Cover It Green by Sue G. Syn

Dancing, Moment by SooJung Huh

Climb Up! by Asli Sevinc

The Drop by Michelle Mayer & Nicholas Rubin

Women in Love by Sara Bremen

Machinema by Adi Marom & Filippo Vanucci

]]> http://myplatelets.wordpress.com/2009/12/07/40-is-the-new/ Mon, 07 Dec 2009 01:11:23 +0000 Nicole Bradshaw http://myplatelets.wordpress.com/2009/12/07/40-is-the-new/

My platelets were 40 today which is very pleasing at DAY 28. Yes it is four weeks since my last infusion.

They think maybe the Dapsone is working. I think it’s the lack of Aspartame and the Mona Vie!!

I go back on Thursday and if I continue to hover around this level they won’t infuse me.

Stay tuned.

I dropped my prednisone to 10mgs last week but went back up to 12.5 as I became really achy. Am now going to try to go to 11mgs. Until I reach 10mgs I have to continue taking Bactrim to avoid a pneumonia that can send you to ICU!

On that note I am going Christmas Shopping.

Bye for now Saint Nicx

I packed my bag with drinks and snacks and sushi and books and ipod. It was so heavy Mum was worried I’d topple backwards with it on my back. I was ready for a long day at HACU.

But, I was in and out in around an hour and a half with platelets holding at 51 (a drop of a mere 4 points since Tuesday) and it is TWENTY FIVE DAYS since my last infusion. Can you believe it?! Twenty five days.  Woo hoo.

And so I was world’s best Aunty as I risked snot and phlegm and chicken pox to go to Ben’s swimming carnival with a bag full of caramel slice, lollies, weet bix slice, cheezels, cooked tuna and avocado and wild rice sushi (I take LOTS of snacks to HACU when I am having an infusion(!). Ben WON all his races, naturally. And Sophie’s Christmas concert at Kindy was the best concert ever – over in five minutes. I kid you not, I sat on the only adult size chair in the place (and didn’t attempt to use the toilets – I’d dislocate a hip trying to get down that low!) and expected to be there a while. But no, a song in Japanese, a rendition of Jingle Bells, the first verse of We wish you a merry christmas and you could hear the screech of rubber as parents  and grandparents fled the scene at high speed – the concert was over! It was a Christmas miracle.

Tonight I sang in our choir at our community christmas party. The audience was drunk and thus we were fabulous!

i was browsing through the albums in my com and chanced upon this phto.

oh.. so young and demure..

LOL.

now, we look like this…

Fun moments during breakout sessions at work.

Yea… thats merely some.

To be continued…

I am tiring and frankly really bored with wearing these bloody, tight, horrible, brown anti-embolism stockings for my dvt. Especially with the weather we’ve been having lately. Why couldn’t I get my DVT in winter? Instead I got it just before the mercury hit 40 degrees (that’s Celsius NOT Fahrenheit for anyone reading this from the Northern Hemisphere!)

They look appalling with shorts and sandals and while I’m no fashion plate nor of a size that could ever dream of being one (in fact there are a couple of size 10s struggling to get out of me right now!) I still don’t like to look too daggy, especially when shopping “in town”. And I think that yesterday I may have been mistaken for a German Tourist in my Birkenstock sandalen mit socken. Except that I was wearing Ecco sandals and my toes were sticking out from my stockings, and got sunburnt!!

I caught the ferry into town to return some clothes I had bought from David Jones just before my last hospital admission. I find it difficult to try clothes on in stores because you need to be contortionist in those changerooms and the likelihood is that I’d dislocate a hip and fall under the door wearing nothing more than my underwear (remember I have a couple of size 10s inside me!) and get stuck halfway and need to be rescued by a teenager wearing heels and a micromini. No thanks! Instead I buy, try at home and keep what fits and return the rest. It’s a bloody miracle if anything does fit me (see above and below!). Bloody prednisone and a need (no not a want, really it’s a need) for high fat snacks!  And not a modicum of will power do I currently possess!

The weather was perfect yesterday so on the way home when it didn’t matter if my hair got messed up or I got drenched, I parked my mobility scooter on the front (the bow?? is that what it’s called?)  of the river cat / ferry and enjoyed the heat of the afternoon on my skin (except for where my stockings covered my legs but not my toes(!!) ) and the occasional gentle cooling spray of water from the river, and the fresh germ-free air! It was just divine. I love Sydney. Love it.

Sorry to inflict the above on you, just felt like a chat! I know you are really just here to find out the status of my platelets, am I right?

Well here you go… enjoy as much as I did.

On Tuesday my platelets were 112. And so I went home and continued my 40mg Clexane injections for my DVT.

 Today  (Friday 27th November – would’ve been my Dad’s 77th birthday today)  – DAY 18 – post Octagam / IVIG infusion and my platelets are at a record high of 89.

Last time I made it to DAY 18, my platelets were 26 and I had an infusion. This time I don’t have to go back to the hospital until next Tuesday.

May not get a spleenectomy this year after all. Woo hoo.

God is that the time? Cheese and wine o’clock!

Until next time.

Cheers…hic…hic…Nicx

In March of this year, J starts feeling worse and worse. His Blood Sugars are through the roof (and I mean WAY HIGH-over 500) for days and weeks on end. I had him at over 300 units of insulin a day and I STILL  couldn’t get his blood sugars under control. No one in Bozeman had a clue to what was wrong. I even took him to his Pediatric Endo in Billings and that turned out to be a JOKE too.

By April, his labs were getting worse and he was pretty listless and nearly lifeless.. I had him in the ER for suspected DKA. Yes, I was basically FREAKING OUT.

I know I am not the first person or Mom to feel completely at wits end, knowing something is wrong but not getting anyone to find out what it is and what to do.

In desperation, I began another of my long, exhaustive online Google searches on every lab, screwed up diagnosis and symptom J had. I stumbled across this article from an Immunologist in Ohio at Cincinnati Children’s Hospital who did a paper on ALPS (Autoimmune Lymphoproliferative Syndrome), which I was told J had.

I email the author with a brief narrative about J’s medical problems, signs and symptoms and diagnosis. And OMG, knock me over with a feather, but this Doctor emails me back in 20 minutes. Short but sweet he says ”I’m 99% sure your son doesn’t have ALPS. Send me the labs”. Now my mouth is ajar and my eyes are dilated. is this is joke, a dream and wishful thinking moment that I actually have found SOMEONE on this earth who has a clue and can help J?

He says he can. I send him the labs, he says it is NOT ALPS. Bring him to Cincinnati and I will help you.  By the time I get this information etc. J is knocking on Heaven’s Door. yes, he was seriously circling the drain and I feared for his life. We arrange with his local doc to get him to Ohio ASAP.

We were on the plane the next day. Hundreds of cc’s of blood was taken, CT’s PET Scans, X-rays, and more and he is finally diagnosed with CVID (but not so fast here). CVID is a “rainbow” of autoimmune diseases but most commonly present as low IG blood levels. J had the lymph node issues, his ‘body attacking his insulin’ and not allowing his body to absorb it, critically low platelets, and no immunities. Turns out J is in the category of “We know it’s autoimmune, but we don’t know exactly what he is, as we’ve never seen anyone present with these symptoms before!”

We spent J’s 14th birthday at the hospital and he gets his first infusion of the wonder drug called IVIg (IV Immunglobulin), which acts like a “fence” around the immune system to stop it (briefly) from attacking the body. It boosts platelets, increases IG and energy levels.

My child is like a new person. His insulin needs go down to less than 50 units a day, his platelets are up, he is FULL of life..

We fly home after 2 weeks in Ohio… I have a new child. My son has a chance.. I feel blessed that I didn’t listen, loudly protested and never backed down (from doctors who were ignorant and lacking any knowledge of immune diseases) and didn’t EVER take “We do not know” for an answer.

My son is alive today, because I did NOT ever give up.

Stay Tuned….

According to one of the Haematologists I am a star.

My haematolgist, Jenny has told the surgeon to put my spleenectomy on hold (for now).

Today (day 11 post Octagam IVIG infusion) my platelets are 143 – the highest they have ever been at this stage post infusion.

If it’s decided that I need my spleen removed it will have to be either in the next couple of weeks (so it’s not too close to Christmas) or after I get back from Noosa. But I may not need it after all?!

Wait and see.

Back to hospital on Tuesday.

Having 40mgs Clexane daily from today. This is a lower dose just in case my platelets drop significantly over the weekend.

The rollercoaster ride continues…

Too hot to write anything else need a swim…

This post below is what I started with several months ago on a Type 1 Diabetes forum I belong to (oh yes, I belong to MANYYYYYY). For expediency sake, I copied and pasted it. I will “begin” again from there on the goings on since that time…. Tell me if you think I am losing it yet? LOL

I will get up to speed and fill in 2009 after this!

Why am I the Murphy’s Law Mom? Well, I will tell you. As you know Murphy’s Law basically means “If something can go wrong, it WILL go wrong”.

On June 6 of 2006 (Yes, that’s right 666.. YIKES), my son was on a camping trip with his Dad in Couer D’Alene. I was having a grand old time out with friends in Missoula and the phone rings at midnight. It is his Dad. “We are in the ER. Jesse has Type 1 Diabetes. How soon can you get here”?” WHAT!!??????

This is the beginning of my journey as the Murphy’s Law Mom.

I high tail it to Couer D’Alene and pick J up and dirve the 6 hours back to Bozeman. It’s Sunday and the Pediatrician is waiting for me outside the Dr’s office (yes, only in small town MT, will a Doc wait for you on a Sunday!). Sure enough, it isn’t a joke. J has Type 1 and as you can imagine, the shock didn’t wear off for months. I’m not sure it still hasn’t.

6 months later, in January of 07, my cell rings at the office. it is my 21 year old daughter Katee calling, crying uncontrollably, muttering something about cancer to me.. I CAN’T understand her at all. “Katee calm down and tell me that again”!! “Mom” she says, “I just lef the ER (she lives back home in CA), and the doctor told me he is 90% sure I have cancer!” Of course, I am FREAKING OUT!! I was an ER nurse for 10 years and NO ONE diagnoses you in the ER for cancer unless they have some damn compelling information. I’m crying and trying to talk to her at the same time. In deeper shock then I was 6 months ago when J was diagnosed Type 1. She goes on to tell me that she went to the ER because she had a fast heart rate and chest pain. they subsequently did a chest XRay and found a huge fist sized tumor in her mediastenum (chest area). Good Jesus.. being  a nurse, I know what this means.. And I am pretty sure the 90% just lept to 100%! 

I have my sister drive me home, because I am now a complete zombie.  How can this be? How can God give me more pain? Why do 2 of my kids have to have these catastophic illnesses? What the HELL did I do wrong??

Not being one to cry a river, I step into action and fly to California and find Katee an Oncologist. We make an appoitment and walk into the Dr’s office. Of course Katee is a mess. I am a mess. Her father is a mess. And the first thing the damn doctor says when he sees her XRay “Oh, well this isn’t good at all”. WTF??????

Off Katee goes into crying again.. How friggin unfeeling is that?? Stupid ass.. But he is one of the best. So basically he goes onto say this is a classic presentation for Hogkin’s Lymphoma. Did I also mention Katee was living here in MT until Nov. of 06 but moved back to Cali because she had uncontrollable itching. How were we to know that is a CLASSIC symptom of Hodgkin’s???

9 months of Chemo and 3 months of radiation (all the while my strong awesome Katee Bug is working full time!!) and in January of this year he deems her “cancer free”. THANK GOD!!

Oh but wait… It isn’t over…..

School started here in MT on August 27th. J goes for the first 3 days, and I notice his lymph node under his right ear is really swollen. So we head to the Dr.’s office for her to check him out. She says “Well, we haven’t done any labs for a while, so let’s run some”. She walks back in a while later with this strange expression. She says “J’s platelet count is 30,000!” Holy crap.. OK folks, the normal platelet count is 150,000 to 400,000. this controls your bodies ability to clot.

There starts the weekly visits for CBC’s. J is diagnosed with something called ITP (Ideopathic Thrombocytopenia Purpura). A fancy term for low platelet count. DUH.. Unfortunately because he is also diabetic, his blood sugars go through the roof.  He’s too sick to go to school. Nobody can figure out what is causing this. He has a bone marrow biopsy to rule out Leukemia. He goes into the hospital for surgery to have the lymph node removed for biopsy. We have to rule of Lymphoma’s, since Katee had it, and the biopsy is the only way.

Did I mention that the doctor admitted him the night before because he had to be on an insulin drip? The hospital nearly KILLED HIM TWICE!! Overdosed on insulin.. That’s a whole other story there.

So here we are, almost 4 months later and J hasn’t been to school. He does have a tutor now thankfully. He still has ITP and his platelets are crap. I’ve taken him to Denver to see specialists. He’s a human pin cushion. We still do not know what is causing the ITP.

CAN I GET A BREAK HERE?

Haven’t been on my blog in a ridiculous number of months. In fact, I started it with my ITP worry thing. In hindsight, what a joke. I wish every day all J has is ITP and Type 1 Diabetes.

I need to go back to the past and start where that left off. It’s a hell of a wild ride.. More to come…

A few people have found my blog by googling “Jonathan Cainer” and “Moran recliners”.

Think I might mention both of these loves of my life more often.

Never know a publisher looking for a comfy chair to read manuscripts might pop by or alternatively someone looking for a good horoscope like:

You will happen upon some interesting reading which will make a lot of money and create fame for you and the writer. But especially for the writer.

www.hasmyhaloslipped.com

My blood pressure was down today – 138/87 – low for me when I arrive at HACU. Not as low as it used to be or as low as I’d like it but lower. So that was a good start.

Cannula Queen got my blood first time. Excellent.

Then my platelet count came back = 205.

No one believed it could be true so they tested it again (why do they not ever test it when it’s low!?!?!). So I sat and waited and it was true.

My platelets today are 205. They have not been that high through this whole ITP thing. And they have never gone up at this point post infusion. (Day 7).

There could be a number of reasons for this:

1. I’ve given up aspartame (particularly Pepsi Max)
2. I have started drinking Mona Vie – a juice / tonic which has Acai berry and load of other fruits in it – I think I might become a distributor if it is the reason, so if you want to buy it send me an email.
3. Dapsone may be working
4. Mabthera may be working
5. My Haematolgist sent a letter to the surgeon (and saw his secretary) who is supposed to be removing my spleen – this caused me to stop attention seeking and get those platelets up up up!

It’s exciting to be that high, I go back again on friday for another test. Hopefully I will still be up.

EVERYTHING CROSSED!!

Prednisone is now down to 17.5mgs

Clexane 80mgs once a day

Bactrim – Breakfast and dinner on Mondays and Thursdays

Slow K – two breakfast and dinner

Nexium – one 40mgs at night

Dapsone – 100mgs daily

Folic Acid – 5mgs daily

Paracetamol – PRN (per required need)

C’est tout!

Nic(ole)x

Sorry I’m so late with my post. My on time record must be up there with Auspost now!

A quick update.

Monday my platelets were 45 so I had Octagam – really fast and felt pretty ordinary that night.

Tuesday they were 90 – so I restarted Clexane injections for my DVT/blood clot – 40mgs. And had my second dose of Octagam but at a much more palatable rate.

Friday platelets were 183 so am now having Clexane 80mgs daily (courtesy of an injection into my stomach by Mum) and go back again on Monday.

I have to be even more carefully monitored now so that they can treat my clot. My platelets have to be high enough that the risk of a bleed from the Clexane is minimised.

I had a fabulous cannula on Tuesday – in fact I had two:

The Cannula Queen strikes again!

We decided going to the toilet might be a tad tricky with this cannula (especially with the styrofoam cup taped on for protection).

So…

Eeny meeny miney mo

I got another cannula in my left hand.

And there I was one in each hand and my blood pressure being monitored…

Tied up - how they keep me still in HACU

They do make me laugh – a lot – in HACU. Really great people doing a fabulous job.