A Stable, Changeless State

Prior to my wonderful boobie experience yesterday, the Centrelink (Social Security department) appeals lady phoned me for more information. We discussed why ‘they’ decided that my condition was not fully stabilised.

Because Mommy and I begged my third rheumatologist (her almost in tears, me with tears dripping down my face) to refer me to rehab (which is costing me a small fortune) and to experiment a little with my medication (I was started on Lyrica back in November and nobody wanted to try anything different before giving up on me and any improvement), my condition is not considered to be fully stabilised.

Supposedly, it doesn’t help that the doctor’s report (from the first rheumatologist) states that he believes that there will be significant improvement within 3 to 12 months (despite telling Mommy and I that there was nothing else he could do for me – how was this improvement supposed to come about, then?)

Then there was the second rheumatologist who decided that all I needed to do was tidy up my ‘sleep hygiene.’

So, I’m up to my third rheumatologist who also thinks he cannot do anything for me, so Mommy and I decided we had to do it ourselves but we still need him (or my GP) for referrals and their prescription pads.

But it appears that for Centrelink to decide that my condition is fully stabilised, I need to give up. I need to remain on my current medication. I need to continue to feel my current pain. I need to lose my train of thought on a regular basis. I need to feel exhausted every day. I need to recoil from daylight. I need to shy away from bright lights at night (and during the day). I need to endure my restless nights. (You get the idea.)

But this is what it seems Centrelink requires from me. The lady told me it wasn’t quite over yet – but don’t get my hopes up.

Lucky me – after that fabulous conversation, I got to have a needle in my boobie (actually three)!

The World’s Best Mother

Today is my mommy’s birthday.

In this huge world, my mother is the person who loves me most. My mother is not my whole life, but she is a really big part of it. My whole world does not only revolve around her, but she is the most influential person in my life. My mother is not just another woman. She is extraordinary.

I have known her for 41 years, 3 months, 9 days, and 22 hours; so I know her very well, and I have loved her since the day we first met.

There is a Yiddish proverb that says: God couldn’t be everywhere, so he created mothers.  My mother IS God on earth, as, when wondering what God would be like, I imagine a loving, genuine, caring person sent to look after us and our needs, just like my mother.

Since I have fallen ill, I have seen my mother shedding tears of anxiety; her hair greying further (not that anybody would notice, though); and worrying endlessly. My mother helps to feed me, clothe me, and pay my bills. My mother helps me have a place to live. My mother supports me, loves me and I love her. If it was not for mother, life would not be possible; or rather, life would be hell without her.

Through all times, bad and good she has been my inspiration and guide. All that I have learnt, I have learnt from her. I wonder what type of person I would have been if it was not for my mother.

I also wonder if anyone else (other than my brother) could ever have such a mother as mine. I am very proud of being her daughter, and I think that she is the best mother in the world.

If not for myself, then for the sake of my mother, I pray to be an adult of whom she can always be proud. Help me remain good and help me to be healthy, prosperous and happy, as this will make my mother happy. She deserves to have a fabulous daughter for all the work and devotion she has put in and will continues to do so.

I know, no matter how old I get, I will always be her child and I will always love her.

Happy Birthday, Mommy.

For the Love of…Writing

The art of writing is being lost. Perhaps the most significant sign of this is that, for the first time in 35 years, the Pulitzer Prize for Fiction was not awarded.

I am not talking about the act of physically putting pen to paper but, rather, the expression of one’s thoughts, feelings and experiences. This art, like law, is something to be practiced, never to be perfected.

I preface this post by not professing to be a master of the art. I am merely a great aficionado. I love to read (although my ability to concentrate on extended pieces of prose has diminished in direct proportion to the period of time that I have had fibromyalgia). But, I had forgotten that I also love to write. I loved to write fully referenced and foot-noted essays of law directed at academia. AND I also love to write this blog. Perhaps I simply love to write for a specific audience.

I always attempt to ensure that my syntax and spelling are correct; I try to make sure that my writing is easy to follow (except when I am trying to give you a perverse glimpse at the internal workings of my mind – then you gets whatever happens!); and, mostly, I try to keep to the topic (that one doesn’t always happen, either!)

I may be showing my pre-technology age when I say that I cannot stand reading pieces with lazy abbreviations, for example: 2 instead of to or too; U instead of you; da instead of the (although, having recently joined TWITTER, I can vaguely understand it – all posts must be under 140 characters long); or too many spelling mistakes; or, especially, the mis-use of homophones (that’s a new word for me, too – a word that is pronounced the same as another word but differs in meaning).

For us, FibroMAGICians (this is my new word), writing is a blessing.

• Writing allows us/me to express what is going on in our heads. If I need to search for a word, because it is lost in the eerie recesses of my addled mind, I can use the thesaurus or, better yet, I can leave it out until I remember later (ummm…if I remember to return!)
• I can choose the audience for whom I am writing (at least when I first started. Now, I ‘know’ some of you and, although it may not always seem like it, I try to write so that YOU can understand and/or enjoy what I write).
• I can write about anything – it is not often that I am given an opportunity to discuss ‘poo’-ing and sex positions in the same place.
• I can edit what I have written at a later stage. This medium allows me to re-read what I have written, omit parts that are REALLY boring and insert the stuff that I forgot.

Can you think of a better place for a FibroMAGICian to dwell?

[Glitterfy.com - *Glitter Photos*]

Related articles

• Your Pulitzer Prize for Fiction (theonlinephotographer.typepad.com)

Real Life

Good Intentions Gone Awry

I’m beginning to think that some-one whose thought processes are a tad jumbled shouldn’t have tried to run a competition. Maybe it wasn’t such a good idea?

Firstly, I uploaded all my pages and links without thinking about it clearly – so I’ve now had to change them ALL! (even though I seem to have forgotten a couple, only to discover it later when something goes wrong!) Steep learning curve – but I’m open to a challenge!

Then, I had to email the entry participants and ask them to change their entry comments – sorry to you if you feel that I invaded your privacy by emailing you directly. Lucky that I only have 2 other entries!

Now, to that – there are ONLY 3 entries so far…and one of those is mine! Not quite what I had envisaged – I was being really optimistic and hoping to change the fibromyalgia world one video at a time…really quickly with a gallery of entries!

Not that the competition is over, or that I’m throwing in the towel – I have provided the Fibro Fighter Prize Package myself and I think it’s fabulous (valued at over $120) so I shall keep nagging you and trying to publicise the competition on FaceBook .

I don’t think what I am requiring you to do to WIN is difficult:

• FOLLOW this blog – that’s me! This is a condition of entry – if you do not become one of my Followers (doesn’t that sound very feudal?), I cannot award you the Fibro Fighter Prize Package.
• LIKE my FaceBook page – Another condition of entry – if you do not become one of my Followers, I cannot award you the Fibro Fighter Prize Package.
• Make a video – this is the part that should excite you, inspire you and make you want to get involved. Isn’t your head full of things you want to say, things you want people to know? Then, start playing around on the computer…google how-to tutorials, experiment, involve your family – this part should be great! There is NO minimum or maximum length for your video.
• Remember that the competition is about Fibromyalgia Awareness Day, so you MUST include a reference to the day – there is a theme to this competition so, TO WIN, you must include this reference. That probably means that you can’t submit a previously made video unless you edit it! It also means that if it is not there, I can’t award you the Fibro Fighter Prize Package.
• Only LIKES on my Facebook page wall and LIKES on your own blog count towards the final result – so you MUST make sure that you let your supporters know. LIKES on YouTube will NOT count so tell your supporters where to go to LIKE you.

So, please allow your creative juices to flow – and I know there might be lots that you need to learn, but why not give it a try? Entries must be submitted by 20 April 2012 and  the winner will be announced on 1 May 2012 (in time for you to receive your prize and wear/use all the stuff for Fibromyalgia Day!)

Help me to sow my good intentions and leave it to the Internet as to whether fruit abounds…

NB: I know that this was not a very creative or humorous or educational post – but right now, my head is full of this competition. I spend my time flipping from my FB page to this Blog, to see if there are any LIKES or new videos – and I guess that’s good because it’s keeping me distracted, but you may already be bored with this crap…so I’ll try for something interesting tomorrow…

The Purpose of Life is a Life of PURPOSE

- Robert Byrne

In 2008, I hit depression and it hit me back – in fact, it sucked the air out of my lungs, swept my legs out from under me, vacuumed my head of any reasonable thoughts and sat me, quite firmly, on my arse! Supposedly, this was all brought on because I was working full-time in the casino (an intrinsically depressing place at the best of times), while studying part-time for my law degree.

Anyway, at the time, I thought it was because I had no PURPOSE – I was stuck. I had 3 years to go with my degree. I had a mortgage. I couldn’t really look for a meaningful change in career quite yet.

I stuck it out (with a couple of extended pauses in there) and graduated with Honours (just HAD to put that in here!) at the end of 2010. I thought that the noble profession of law would be my PURPOSE.

Well, I only got to practice for one month before my body said: “Tee Hee, ready for the next hurdle?”

So, here I am.

Under legislation, I am not allowed to practice unsupervised for 2 years, but it seems that I can’t work for some-one because I can’t be relied upon for scheduled work days/times. My employer has been very considerate and co-operative in regards to my condition. We have tried different combinations (eg: 3 hours x 3 days per week in the afternoons, working on the weekend when there are no distractions or noise, working late at night when I seem to be less distracted) however none of these have worked on a consistent basis. I cannot envisage how I can maintain employment with this thing called FIBROMYALGIA.

So, once again, I am confronted by what my PURPOSE might be…

Getting up at 6.30am (doctor’s orders) is mighty difficult when there is no reason to be up at that time. Sitting on the couch until my mother can pick me up to take me out is hardly meaningful. Scheduling when to shower so I have enough energy to walk to my doctor’s appointment is not inspiring. Playing with my nieces and nephews will not change the world.

Now, that’s it. My psychologist and I were chatting last week about this topic. She said maybe my legacy would be via my nieces and nephew? But, to me, that’s not good enough – I want to do something big. I NEED to do something worthwhile (not that the kids aren’t worthwhile). I want to DO something, like discover penicillin or change laws.

Hmmm…I do have an idea for a round thing that revolves on an axle and is fixed to another object to enable it to move over the ground?

Inspiration – unknown author

Quote

If you’re absent during my struggle, don’t expect to be present during my success ~ Will Smith