It’s My Life!

Woah! Really busy for me out in the real world – there is actually a life for me beyond Fibromyalgia Awareness…

As you know, last night was my fabulous shiatsu massage; but, before that, I had a very-overdue botox injection (or lots of little ones) across my forehead: Botulinum toxin, commonly referred to as Botox®, is well-known for its cosmetic use to eliminate glabellar lines, the frown wrinkles between the eyes (which is fabulous) frown_lines_beforeyet it can also relieve migraine-type headache, muscle tension headache, or chronic daily headache. Results can be dramatic. Some patients (about a third) who have suffered from daily headaches for years report being free of headaches for two to five months; so I’m hoping (at least) some of my head pain will disappear.

After that, it was an appointment with my lap-band doctor – basically unnecessary because, during this whole month, despite hardly eating because of teeth pain, I only lost 400 grams (that’s a poo!). Hopefully, after this whole ‘Lyrica-weaning’ process, I will start to lose some (much un-needed) weight!

Driving Miss DaisyToday I was lucky enough to receive my very belated birthday present – a matinee performance of Driving Miss Daisy with Angela Lansbury and James Earl Jones. I had seen the movie (a very, very long time ago – after googling it, the movie was around 1989 so I was 18) but I really didn’t remember the entire Jewish storyline, only the black racism. It was pretty damn cool and I had a (very uncomfortable) seat in the second row (that’s from the front!)

And now, tomorrow, it is Z’s 3rd birthday party (so I’ll see my father for the 1st time since The Letter) – he decided to have a gardening party with minimal decoration (BUM!) but I did what I was allowed to:

hungry caterpiller (window)hungry caterpiller

balloons

His real birthday is on Tuesday so I prepared a treasure chest of presents…

chest closed chest opened

and decorated the spare-room at my house for when he sleeps over.

view from door full view

We’re going to the Zoo!

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Tick all the Right Boxes

I woke up today and it was just another normal day UNTIL the postman came…

Three boxes arrived – I’ve told you I like to shop!

Box 1

The first box I opened had my order of 2013 desk calendars – FibroModem Girl Favourites (MY favourites!) So, the desk calendars are available at my shop for $17.00.

Does this mean I’m a published author?

Box 2

The next box had more shop stuff – just in time for the Holidays and very pretty.

Box 3

This one was the best!

My brother’s (father of Z) 40th birthday is on November 8th – mid-week so it can’t be party time. So, his BIG birthday party is going to be on November 10th. I can’t be there because I am having a stupid gallbladder operation the day prior. However, we are having a family get-together on Sunday November 4th.

Firstly, I should explain that my brother is named Michael but everyone calls him Mitch (except if we’re mad at him!) Also, he is a pilot.

So, over the last two weeks, I have slowly been working on his family party.

This is the invitation.

I printed out, then cut up and glued (yes, I paced over the entire time!) little goodie bags and pilots’ visors.

Hand-made goodie bags Pan-Am style

Hand-made pilot hat visors

Then I made a tonne of different labels to go on everything…

These are going on everything – from the champagne and orange juice glasses that Mommy and I (dressed as matching stewardesses – I’m even going to have the fake ponytail!) will give passengers on arrival to all the containers that we are putting the food into (because that’s how they serve it on the plane!) And, as on any plane, all cutlery (and wetnap) will be wrapped in plastic for hygiene.

Of course the kids can’t have champagne so they’ll be given MitchAir Kids’ Club bags, which will, of course, have the appropriate warning and liability notices on them. Each child will get the appropriate plane-oriented surprises. 

Now is where today’s box comes in… Here is what arrived!

So, as you can tell, I’m very excited – I’m even making cupcakes with blue icing. (And I damn well better be okay to play my part!)

Happy Birthday, Mitch – I love you. (Don’t worry – he doesn’t read my blog, either. It will still be a surprise!0

Spring into the Unknown

So, I still feel awful. I have incredible pain in both my wrists and ankles – it feels like the extra valium, that I took for the MRI, has all surged to my extremities and is sitting there weighing them down. I am so incredibly tired that I napped longer this afternoon than Z, who napped with me.

Firstly, I decide to check if there are any weird drug interactions, so off to http://www.healthline.com/druginteractions to have a look at anything there that could be making me feel this bad.

Hmm…nothing much there (more than normal, anyway).

Could it have been that I am still being affected by my over-doing it all on the weekend?

Could it be this wonderful Spring, Melbourne weather (with one day being a lovely 25 degrees, and the next being 18 degrees)?

Could it be that I’m anxious about my liver MRI results (even though I know there will be no problem because Mr B can cut out whatever it is, whether good or bad)?

Could it be I’m subconsciously stressed by the up-coming surgery (on my gallbladder and, maybe, liver)?

Could it just be?

And, all these questions, could be the reason why I’m still not coping yet (hence the name of my blog)…

 

The First Time

Many of us think we’re stuck: nothing is going to change, this is it, this is my life!

But why? There are still so many things we can do – and, for those of us stuck at home, perhaps a new opportunity to try something new.

It’s halfway through the year and here’s what I have done for the time:

18 January 2012 – Attended my first burlesque performance

2 February 2012 – Attended my first hydrotherapy class

27 February 2012 – Started my first Facebook page

6 March 2012 – Attended my first Bowen therapy treatment

13 March 2012 – Went to the Doggy beach for the first time

16 March 2012 – Wrote my first Blog post

28 March 2012 – Made my first video

1 April 2012 – Opened my first Cafepress store

4 April 2012 – Attended my first Pilates session

12 April 2012 – Attended my first Yoga session

18 April 2012 – Attended my first Tai Chi class

22 April 2012 – Z sleeps over for the first time

25 May 2012 – Produced my first cartoon character (FibroModem Girl)

1 June 2012 – Published my first newsletter

1 June 2012 – Attended my first Shaitsu treatment

7 June 2012 – Attended my first reflexology session

***NB – dates are from my own diary and may be incorrect as compared to blog posts.

Now I’m not trying to toot my own horn here – what I am trying to do is inspire you into trying something new. It can be absolutely anything – somewhere in all of that, I tried to make vegetable muffins for the first time – massive failure! So you could try baking, meditating, reading a new author, etc.

So tell me, when was the last time you did something new? And what was it?

A Little Mad

I’m a little mad (not crazy mad, fuming mad!)

I was doing my normal posting of information on Facebook. Because I am aiming my soon-to-be charity in Australia, I posted some information from my Facebook page site to other Australian Facebook pages. Then, because I am personally a member of particular Facebook groups, I posted the same info on their pages.

Well, then I got a couple of comments from other members…

But, first:

  1. I fully believe we are an INTERNATIONAL community of people with FM.
  2. I fully believe we are an international COMMUNITY of people with FM.
  3. Until now, I hadn’t noticed but, I use the word WE all the time when talking about people with FM.
  4. I wear a purple support bracelet from The Fibromyalgia Crusade, a US based cause group.
  5. My most recent video included people with FM from all over the world.
  6. I have been trying to help other FM groups with their promotions, no matter where they have been based.
  7. I have two (well, I gave one to Z) FM awareness rubber duckies that I bought from the US.
  8. I re-edited one of my videos in Portuguese because one lady wanted to show it to her family and they didn’t speak English.

My point is: we are all in this together. It doesn’t matter where a treatment or cure is found; it will be shared (sooner or later) worldwide, so I believe we need to support each other.

…Now back to the comments: It was pointed out to me (by two members) that the page I had posted on was a US based charity support group; and that it was more important to support each other first.

Now, this group has 1,058 members. I can’t decipher where all the members come from, so I’m pretty sure that these ignorant, uninformed (no Word thesaurus word for idiot or moron) malingerers can’t do it, either. There is nothing in the name of the group that states that it is a US only support group, so I can pretty safely assume that some members are from places other than the US – so I am not sure who these two people think that they are supporting: is it only US-based research? Is it only US-based treatments? Is it only finding a cure in the US?

Ha! And do you think that if I, or an Israeli or a Canadian or a New Zealander or a Dane (you get the idea), should somehow find a cure for FM, that these two <insert your own word here> would not be in the line to buy it?

Giant rant over now, but I’m still fuming mad!

NOW!

I am hoping that by writing this down, I will feel better.

I feel like Humpty Dumpty, that at any moment, I am going to fall and break into a million pieces.

As you may know, I am looking into starting my own charity – the initial aim of which is to spread awareness (of course!) and to help FM sufferers to become actively engaged in their own recovery, by giving them the opportunity and financial resources to assist them in rebalancing the systems of their bodies. There is a hell of a lot more research and planning (not to mention, money) required to start this project than I ever thought possible. I found a great site with the most helpful advice, which I am trying to print out (I prefer hard copy for reading long pieces). So far, I’ve killed 2 printers, used all the ink from another printer and produced about half a ream of reading material. That’s enough to stress me out – I’m having lots of trouble with reading for long periods of time (and this used to be my favourite past-time).

I think, from my initial research, that I have to apply to be incorporated and have at least 5 members. Then I have to apply for DGR status – which allows people to give tax-deductible donations. Then I have to start applying for fund-raising licenses. I learnt all of this from a friend, who has sent me on a net search of particular sites that would, prospectively, be good models for me to follow. Of course, I, being me, have to do that NOW!

All I want to do is design a new website and start fund-raising. I have a great idea for an annual event (which could be adopted world-wide), which I can’t tell you about because; since I published my desire for photos for my REAL video, three other photo videos have been produced by other groups. It may just be coincidental but I think this next idea is fabulous (yes! I say this myself) and I don’t want to share it; I found a wonderful site to source purple ribbon and butterfly merchandise which I could sell; the massage school wants to have a fund-raising day for my charity (except I don’t have one yet); and, there’s my Fibromyalgia Awareness Day Symposium which I would like to start looking into. And, I want to do it NOW!

Today was the last day for photos to be submitted for my REAL video, so I need to complete production. I am going to have to give up on my Johnny Cash song as Universal Music, obviously, does not think I am an important enough priority; I will have to find some royalty free music to use, as I would really like this video to be promoted and distributed throughout the FM community, and I would prefer not to be sued for breaching copyright laws. So, I have to complete it NOW!

Although the next issue of LIVING WELL with FIBROMYALGIA is not published until September 1st, I keep returning to my draft and playing with things. I can’t just leave it alone until the new contributions come in. I must have it ready NOW!

I’ve been reading my blog entries and finding them relatively boring and staid, so I need to find new sources of inspiration before I bore you all to death and have no readers. Guess what? I have to do it NOW!

I am finding it impossible to keep up to date with what is happening on other Facebook sites (you can almost forget about other people’s blogs!) but I know that there is so much information out there that is interesting, thought-provoking and, to me, necessary to read. And, I want to read it all NOW!

I have a dirty washing basket full of all my favourite clothes waiting to be washed NOW but that would mean that I have to take the clean load out of the washing machine, which would mean that I have to take the other load of stuff out of the dryer first and that would mean that I have to put the stuff away. That’s something I don’t want to do now, but probably should.

My brother just handed me a contract, which he would like me to peruse, from his bank regarding his loan for the house he is going to build (remember the previous contract that he gave me to look at?) – that would be the house contract that he is signing on Wednesday. And that would be the contract that I spent 3 days reading and taking notes on, so he would be treated fairly, without charging him for (of course). And that would be the contract that he didn’t bother to tell me that he has decided to sign. I feel affronted – it would be different if I was just his lawyer but I’m his sister, too. It would just be very nice to know.

He gave me this contract at my auntie’s place, where we (Mommy, Henry, Z, Dave, Naomi and two other people I didn’t know) were visiting my uncle, who just, very successfully, got through triple by-pass surgery; after spending the day at my Mommy’s with two of the youngest (and loudest) grandchildren.

So, it seems to all run together. And I cannot get my brain around prioritising it all.

I’m considering closing my blinds, turning off the phones, lighting candles and having a holiday at my house (by myself!) but, for that to work, I would have to throw my computer out the door, too. I don’t think that’s ever going to happen.

And it would all just be waiting for me anyway.

Hmm, I don’t feel much better after writing it all down but I think I have a better idea about what I have to do NOW!

Start Wearing Purple for Me NOW!

So, it’s 5pm on Friday (here) and the weekend is about to start. Bring on International Fibromyalgia Awareness Day!

My family has a traditional Shabbat dinner every fortnight – so tonight the theme is PURPLE. I have started to dress the table with my purple accessories (and, of course, photos will follow). I have dyed my hair (or at least, the regrowth from the shaving) a colour called ultra-violet. Mommy and I will be wearing purple.

Anyone else got special plans this weekend to celebrate Fibromyalgia awareness?

Oh! What a Beautiful Morning!

The sun has come through those doggone clouds that have been here all week (and will return soon – Winter is coming!) The sky is blue. And I’m feeling exceptionally positive! (That could be because of the prednisolone, though, because all your warnings were correct and the ups and downs of this drug are berserk!) But everything is better when the sun is shining (except when it is too bright and causes my eyes and head to hurt – can’t I just be happy?)

Today I woke to marvellous comments on all my social media sites – it was almost like it was my birthday…but better – because I didn’t have to get a year older! The total and utter depletion of any energy from my body, that was yesterday, has been replaced with (some) buoyancy.

My Sickness Allowance came in so I was able to pay some money to my VISA. (I don’t even realise how much stress that puts on me until I press the PAY button and I can sigh with (some) relief.)

My wonderful Mommy and her cantankerous (yet loveable) partner, Henry, are going to ambush my previous rheumatologist. I have been waiting 7 weeks for him to complete a medical report so I can continue my appeal for Disability. I’m really glad I’m not going to be there – it will be really loud and embarrassing, but it should scare the shit out of him! There are appropriate times to cause a scene! This is one. If I don’t get that form returned in time, I will miss out on approximately $2000 in back pay. Go Henry!!!!

I am returning to the doctor, armed with all of your drug suggestions, to plot the next path in my course. I was thinking about it yesterday. I’ve decided I want a young, motivated doctor – some-one who is still positive and wants to be the best! some-one who wants to discover new things, who wants to be published, who is willing to experiment with new things! It seems that the older the doctor, the more jaded he has become! We need CHANGE THE WORLD doctors!

This evening, Mommy and I are going to our first BodyBalance class, which is supposed to be a fusion of tai-chi, yoga and pilates. Yay! some-one to come to classes with me! I’m looking forward to it – I can imagine Mommy and I giggling at the back of the room, like schoolgirls, falling and having to help each other up. You know I will let you all know how the class goes.

So, all-in-all, a great (actually, probably really normal – but it’s amazing what a positive attitude will get you) sounding day!

And, in case, you’ve been waiting with bated breath – here are some photos from Z’s party:

Cheeky Monkey Party

My birthday card for Z.

Today is Z’s 2nd birthday party.

We are having a monkey party (his choice!) so some dress-ups will be required. Photos (if there are any good ones) to come.

But, as I may not have enough time (or energy) to post – I have pre-posted a gallery of previous dress-up parties. Feel free to comment and make fun!

I am a girl who LOVES a themed party!

And I have the opening night of Annie to come – the theme is Something Red. Pity I don’t fit into my Priscilla dress anymore!

Sleep Over with Z

Z slept over last night then his mommy was sick and couldn’t pick him up; which meant that I missed out on yoga. I was all ready to go with my purple butterfly yoga mat, my new purple sneakers and my Fibro Fighter t.shirt.

To tell you the truth, I don’t know that I would have been able to make it, anyway.

Having Z for the night meant getting up before my legs were ready, changing his nappy before my eyes were even open, entertaining him from 6am even though everything was aching and throbbing, persuading him to eat breakfast despite not normally talking to anyone until after noon, drawing pictures, playing with trucks, watching Grover (argh! the noise!) – and all before 8.30am.

At this stage, I phoned my uncle to meet me for hot chocolates and a baby-cino and, most importantly, some distraction for Z. Then it was back home, where, happily for me (and this is the part I love the most), he fell asleep on me, on the couch, while watching Sesame Street – all cuddly and warm.

Then UP for some soccer in the driveway, then a birthday party in the park, then lunch, then an afternoon nap. Then, thank God, his Grandpa picked him up.

Doesn’t sound all that big to all the moms out there? I’m only an auntie – without kids, who has lived alone for the past 10 years. But I have a new respect for you (especially the ones with Fibromyalgia)