Things Mel Discovered This Week

Things Mel discovered this week:

Sitting down
   (I'm so dizzy, my head is spinning)
Closing my eyes while sitting down
   (like a whirlpool, it never ends)*
Opening my eyes while sitting down
   (Wham - migraine)
Standing up
   (Vertigo is not just the name of a Hitchcock movie)
Bending over
   (how to pass out without alcohol)

Sleeping
   (the knock-me-out drugs are out of my system)
Sleeping in a single bed
   (I forgot how many bits of me could hurt at once)
Sleeping in a single bed with my ample body
   (there is very little room)
Sleeping in a single bed bed with my ample body and a determined geriatric cat
   (did I mention the lack of room - or is this related to the sore body parts)
Sleeping in a single bed with my ample body and a determined geriatric cat and a determined elderly cat discussing dominance issues
   (perhaps sleeping is the wrong word)
Sleeping in a single bed with my ample body and a determined geriatric cat and a determined elderly cat discussing dominance issues on my body
   (oh fer crying out loud!) **

Are there too many ads on daytime TV?
   (don't bother answering that)
Are there too many insurance ads on daytime TV?
   (and why are the same ones played incessantly at strange times of the day)
Are there too many types of insurance ads on day time TV?
   (and do they all need to use scare tactics to sell their product)
Is it healthy for me as an ill person, temporarily home bound, to see an ad for funeral plans every five minutes?
   (my DVD collection arrives in 4 days!!!!)***

All however is not lost. I only spent one day reduced to relying on daytime-TV for pain/disorientation distraction. Yesterday mum and I went for a walk and bought some plants for the garden. I was quite worn out by the trip, but it was an improvement.  I was even gracious enough to encourage mum to buy the marigolds she was favouring instead of the carnivorous plants I was lusting after.

For an hour today I could not only follow a conversation, I could add meaningful suggestions and help make plans before the fog of pain and disorientation descended.

Its going to be a long journey, but it seems that we're heading in the right direction and that the encouraging bit.



*apologies to Vic Reeves
**  at this point I should mention that Abby, being the sensible young cat she is, avoids all of this, by sleeping on mum's Queen-sized (heated) water-bed each night, stretched out in luxury!
*** for those who comment about why I have the TV on in the first place, for the above mentioned vertigo/dizziness I cannot read for long periods of time and for noise-related issues I cannot listen to audio books or music - hopefully all of this will soon change

Life Update

OK here's all the info that was left out of the last update ...

After each design was finished the words "and then the migraine got bad again" should be inserted :(

I tried stitching a gorgeous little design for Claire's birthday on 40ct linen and discovered that I could not see the holes.  I literally could not see where to put the needle :(  I figure the migraine is affecting my eyesight - or the tumor has enlarged and is now pressing on my optic nerve (it was a bare 1mm away from it at the last MRI) - or I'm just too tired from work - or my eyesight is going ..... or all of the above.  At this stage I'm looking to outsource this project and see if I can find someone else to stitch it up for me as I think Claire would love it!

I stopped stitching for quite a few weeks in between projects, wishing my eyes would stop hurting and the migraine would settle down.  Then I realised that my stitching is part of my meditation and relaxation program. I need to stitch to ease the migraine. 

In between each of the canvas work pieces I keep trying to stitch on Kay's RR but my eyes give out after half an hour and then they hurt for the rest of the day.  I'll give it another couple of weeks and hope that my eyes settle down otherwise I may have to send it on unstitched :(

Kay and Sisu - let me know how long I can keep Kay's piece before you need it sent on regardless of what I have or have not managed to stitch on it - please? I don't want to put anyone else's stitching rotation out. The next rotation after this isn't sent out until 1 February.

In other news, I won a door prize at the Arelate Designs booth at the October Online Needlework Show and I treated myself to a couple of small Passione Ricamo designs and some Lilipoints designs at Colours Down Under Friday night (they were ordered back in April).  The rest of my tax refund went straight into the bills fund.

The good news is that although I've had a few setbacks, the bills are on track to be completely paid off by October 2011.  The next bill is my personal loan, which should be paid off by February, the last bill bill being the $5000 I owe Debbie for helping move Stephen and my goods & chattels to Perth.

Unfortunately the big plans for losing weight and de-cluttering my life have been derailed - but its all a journey.  I figure its like juggling, you get one ball moving well and then add a second ball, when you have them down quite confidently you add a third ball.  And then you drop them all, pick them up and start again.

the big issue that seems to be knocking everything over is the migraine.  It was supposed to be history now, but it is still here. Stress at work is not helping and both my supervisor and I are at a loss at to what to do about it.

I'm running a state-wide training course in social media and online tools for public libraries in Western Australia.  Course is here if anyone is interested ... If you have any constructive criticism, please let me know!

I'm paid to work 3 days per week. During that time I'm expected to run this course (which NSW State Library said took 8 people full-time, other State Libraries had similar manpower), plus all the cataloguing for my library, plus cleaning up the library database plus everything else I used to do that filled my time.

So I'm working 60-70 hour weeks and being paid 27 hours, The rest is supposedly being accrued as TOIL (Time off in Lieu) but all requests for taking that time have been denied until at least the first of February.

We wont mention that my base wage of 27 hours does not cover my expenses (I regularly eat only one main meal a day).

My supervisor is trying to deflect the heat from inside the organisation because I'm not managing to get everything done.  Meanwhile I spend hours a day (on my days off) helping library managers and workers in my library and other libraries playing advocate, mentor, encouragement, support system etc.  You know all the things currently being denied to myself and my supervisor {sigh}

So yeah a little stress. A little draining.  Any and all advice gratefully received. It's driving my supervisor mental seeing me through this and not being able to help.  And it hurts me to see the amount of flack she is taking - she doesn't deserve that!  So yeah, any thoughts (legal ones please - I'm not allowed to physically hurt the other managers in my organisation) let me know ;)

Another whiny rant :)

The Good
A couple of weeks ago I was asked to run a Web 2.0 course for all library staff before the end of the year. Most other States in Australia ran these courses back in 2007,  But not Western Australia. So my work has decided to go it alone and gave me eight hours to put a program together.

I looked at what other placed had done, field-stripped their courses and assembled a 10 week package of Web 2.0 Basics with the really fun stuff to follow in a subsequent course next year. With the assistance of Mark (the eservices coordinator aka web guy at my work) it went live two days later.

You can see it here at: http://swanlibraries.blogspot.com/  If you are interested feel free to play along - you just wont be eligible for the prizes :)

I also sent a report to the State-wide Public Library eServices Working Committee explaining what we're doing, why we are doing it, why we are doing it this way, when we are doing it, a link to the course itself and a explanations of our measurements for success.

The PLWA committee rang me Friday afternoon and asked if I would allow them to copy my work and send out it State-wide in two weeks time.  Some negotiations were had with my managementwitht e result that Mark will be will be opening up our course state-wide tomorrow and I will alter the content appropriately on Wednesday.  I've also been asked if I would be a consultant to a couple of state-wide committees.

Which will all look good on the resume.  Especially as all of this has been in my own part-time work hours and around my usual work.  With a migraine.

The Bad
I have named my migraine Bruce in honour of Bruce Banner, Unfortunately Bruce has been getting too agitated lately* and has turned into the Hulk for the last couple of weeks. So I've been working with the lights off at work, wearing sunglasses and wincing every time someone laughs,  I also average 5 hours a week out with the customers.

I'm back to having broken sleep because the pain wakes me after an hour or so. The other morning I fled to work within 15 mins of walking up because the next door neighbours had their bathroom exhaust fan on, and the sound was making me scream. My short-term memory is so shot I can't tell you what I had for breakfast without looking at the utensils in the sink (and its only 8:31am here). In short its as bad as it has ever been.  My doc has also been off work ill so I can't get in to see her for another fortnight to change the medications I'm on.

I know that stress is a trigger or at least an amplifier for the migraine, and I've recently established that caffeine is another trigger**. I would still have expected the medications to be countering these negative influences, not have the whole mess spiral back into what it was earlier in the year.

The Ugly
Trubs has been diagnosed with kidney disease.  I had to fight the vets every inch of the way to get them to test for it, but yes it came back positive. I'm taking her in this week for the associated blood test to see how advanced it is.  Either way kidney disease is not curable or reversible so we are talking quality of life from here on in.

When I let loose on the vets for not agreeing to perform the tests earlier, they said they didn't like to perform kidney function tests because most people, on hearing the results, put their pets down. Well geez you fuckwits, if you administered the tests earlier maybe other responsible owners would have the knowledge to help their pets before it became too advanced!  Apparently not. Apparently treatments are considered too expensive and too traumatic for the owners so 99% to opt to euthanize their pets immediately.

Treatment seems to consist of changing Trubs to a low protein, low phosphorus diet and taking a pill every day.  From what I understand this reduces pressure on the kidney and reduce the build-up of toxins int he blood, dementia, glaucoma etc.  I say "from what I understand" because I've done all of this research on my own. The Vets haven't treated any cats with kidney disease because of the afore-mentioned immediate euthanizing.  They do have a dog patient who has had kidney disease for seven years and is now dying of cancer, but no cats.

So I'm also looking for a different veterinarian clinic, one with a bit more understanding of these specialist needs ... or perhaps its another case where the locals think differently than I do.


So to sum up ... I'm frustrated!

• I'm frustrated that I live in a State where all major decisions get briefly discussed a s a good idea or passed over once every eight-week meeting and then they pounce when someone actually does something. God forbid anyone local should actually use initiative.
• I'm frustrated that my work management are finding so many ways to capitalise on the work I'm doing, but they wont pay me an extra hours to actually do it well.
• I'm frustrated that my ex-supervisor is speaking to HR about all the tiniest facets of all the other parts of my job that I'm not getting to, in an effort to get me performance-managed out of the organisation,
• I am frustrated that my health is deteriorating and I don't know how to stop it.
• I'm frustrated that Trubs is dying and I don't know what I can do to make her pain less. I don't know what to do to give her good palliative care.

I just don't know what to do and right now I am not finding any support/advice in the areas I need it.

And I swear to God, if the next-door neighbour doesn't finish whipper-snipping soon - I'm going after him with an axe!

If the Police ask, this blog post doesn't exist :)



* maybe something to do with trying to run a state-wide training course, an internal training course, setting up two other training courses for next next month, all the cataloguing, setting guidelines for good cataloguing practice, training complete novices into the art of good cataloguing and completely re-writing the 200 page work manual for all facets of work in the library pending our software change in November - all in 20 hours per week.

** I don't drink caffeine regularly so this came as a bit of a surprise. I have the rare iced coffee milk or Coke about one every couple of months, so this one was actually hard to pin down.

If you're happy and you know it ...

... then you also know ignorance is not bliss.

So many stresses have been relieved in the past few days that I feel more cheerful and optimistic this morning than I have for quite a while. Mind you going out on the town last night with a gaggle of other single women (aged 30-45) from work last night and drinking cocktails probably helped too :)

Tumor on the Pituitary Gland. In summary, the tumor is a non-cancerous fluid-filled sack that is pushing my pituitary gland all out of shape,  However my pituitary gland is still working well, so no surgery.  Every 12 months I will need an MRI and some blood tests to confirm all is OK. As soon as the pituitary gland is not working properly, they will but me into surgery.  According to the neurologist that might be in 50 years time.

Primary Chronic Daily Headaches. Innocuous sounding name for something that has been so painful for over two months continuously. I still need to do a LOT of reading up on this one, but the basics as I understand it (and please anyone with medical background please correct me if I'm wrong):

Stress causes headache causes broken sleep patterns causes stress plus headache which then causes sleeplessness which then exacerbates stress and headache and sleeplessness and the whole circle goes around and around getting more and more severe. It also brings on "medically induced emotional incontinence"; translation: I cry at the drop of a hat.

The neurologist has given me some medication from the tricyclics family to help break this vicious cycle. I also need to reduce the stresses in my life and once we get the dosage correct, this should all be over within the next six months.

As a couple of you know I am having major problems at work with my direct supervisor. She has now admitted in a meeting with our manager and HR that she considers me difficult to manage so she stopped trying and just ignored my presence.

Unfortunately for her, she also admitted that whenever I tried to talk to her about my medical condition and how its affecting my work she said "I don't want to hear about your personal life".  This means she did not follow Occupational Health and HR procedures to inform our Manager and HR that I had a serious medical condition.  Both HR and my Manager are well aware that my supervisor has left the organisation open to litigation if (as it has now been determined) the work situation exacerbated the medical condition.

HR and my manager have decided that for the organisation to redress this issue, I will be moved to a different branch, given a different supervisor and given different work for the next six months.  The details are still to be negotiated but it looks like it will include a return to my forte of cataloguing and database integrity (work I love doing and can do in my sleep - yay!) and I will provide periodic written reports from my doctor to ensure that my work is not affecting my recovery.

I was also given on the spot approval for any leave I wish to take in the next six months. So I decided to take two weeks off work from the end of next week.  I have work to do that cannot be just left, and I have a BIG week of work in early July, but I'm taking the two weeks off in between.

So definitely a win and I should be back to the bouncy Goth Tigger you all know and love within six months.


Unfortunately, as I have a predilection to headaches* and I am in a stressful situation both at work and at home** this situation is very likely to reoccur, so I need to make changes changes in my life.

This is where I still need to do a lot of research on this condition. The neurologist gave me a couple of medical papers and details of a book to read*** but basically I need to start my meditation again, institute a regular regime of exercise (when I am capable and not before) and move back to Sydney or Melbourne (a cosmopolitan city which contains many friends and is easily visitable by family).

So time to now put some quiet music on and give my house a thorough spring clean.



* I can tell the difference between a tension headache, a dehydration headache, eyestrain and migraine
** apparently living on your own with no close friends or family and where the primary culture is an anathema to you is considered a stressful situation
*** because I'm a librarian he gave me the ISBN - he looked so proud of himself :)

Health Update

Well after two weeks of blood tests, I had the MRI this morning and saw the endocrinologist this afternoon.

The upshot of all of this is that I have a large sack of fluid (growth/tumor/cyst) growing on my pituitary gland. It is quite large and has distorted my pituitary gland all out of shape. However the gland is apparently still working quite well so if there were no headaches the endocrinologist would recommend leaving everything alone and checking on it in a year's time.

Unfortunately the headaches are real and ever-present.  So the endocrinologist is sending me to a neurosurgeon for a his opinion on whether surgery will actually alleviate the headaches. I see him next Tuesday afternoon.

I've also been referred to a neurologist to see whether the headaches are caused by Benign intracranial hypertension (BICH). I see him on the 10 June.

So at this present point in time, I've spent a lot of money, been in a lot of pain and we have a much bigger list of things I don't have ...

Its a process.  It will be fixed.  It will happen.