Happy Anniversary Baby!

Well yesterday was the one year anniversary of the last time I had a cigarette and it was the easiest quit ever.    I have come to realize that I am actually in control of things like smoking - I can stop quite easily with minimal pain (nicotine gum for a couple of days) and easy to manage cravings.  It just isn't that hard!

I'm trying to apply the same mindset to my dietary lifestyle change.  I'm trying not to say I am on a "diet" and to invoke the phrase "going primal" instead and strangely it is harder to change the way I talk about what is happening than it is to change the foods I am eating...  Maybe because I need to think in advance about foods and the words just pop out uninvited... I'm not sure...

Looking around online for more info on the Paleo Diet I came across a series of reports from a San Francisco TV Health Watch program.  The TV doctor was going paleo and followed a diet prescribed by the research team at UCSF and the documentary clips are so interested I thought I should post them here... about half way down this page there are five links under the video clip - I think they are really worth a look.

I'm doing pretty well with going primal...  yesterday I made a huge pot of Italian style vegetable stew stuff...  

two onions chopped and softened by frying in a teaspoon of olive oil

two tins of tomatoes with no added preservatives or sugar

about twenty pitted kalamata olives

a generous sprinkle of Italian herbs and black pepper

about a tablespoon of garlic

a teaspoon of ginger

a teaspoon of chili

two carrots

six medium zucchini

one medium sweet potato

a quarter of a small pumpkin (skinned)

one large eggplant

about a cup and a half of red wine

any other vegetables you feel like adding.

It was super yummy - I ate a bowl and a half with just a little shaved Parmesan sprinkled on top.  Then I stir fried some lean kangaroo meat that had marinated in red wine and garlic (which I think could have been better if cooked on the BBQ). 

The tomato stuff made enough for maybe three meals for TLOML and I.  We ate as much as we wanted, then froze half of what was left and kept the other half fresh for eating today and tomorrow.

Not bad huh?  This is the Italian version of my standard one pot vegetable thingy...  I have an Asian style version and an Indian style version but they are all basically the same with different spices and flavours.  

Probably none of this sounds too amazing but seriously I didn't cook anything until this year really... except to run the BBQ grill and to grab processed food from the fridge I had nothing to do with food production until moving in with TLOML.  Now I cook heaps and we reheat my cooking on most of the other nights!

As an aside it is anniversary season for me...  in about a week and a half TLOML and I celebrate our first anniversary.  I have already bought a few little gifts online and have been having the fun of seeing them arrive almost daily.  I doubt TLOML will do anything much but that's fine.  I have the leisure and pleasure of shopping and choosing things while she is at work.

Do check out the video it really is enlightening...  There is another story about the study, two groups of diabetics were given diets for two weeks - one group was given the diet recommended by the Diabetes Association (the Mediterranean Diet) and the other group went Paleo -- the first group showed no significant changes while the Paleo group saw lower blood pressure, lower cholesterol, lower blood sugar and lower triglycerides.  It even surprised the researchers what could happen in two weeks!  I hope my version of this diet does the same for me when I go in for my 30 day blood tests!

Perceptions of ability within disability...

Today I am going to see a new GP.  Anyone who has read this blog from the beginning (I really don't think you exist) will remember my trepidation and then my joy at my first visit to Dr McLovely, whom I am missing quite a lot!  I have been here nearly a month and I MUST get some prescription renewals.  I'm dreading it. I have to take my copy of 'War and Peace' (my medical file from Dr McLovely).

I now live in a VERY small community, TLOML works at the local medical center part-time, The Nurse is there full-time, I socialize with some of the doctors and most of the nurses and admin staff...  Of course The Nurse and TLOML see me enough to see both my good days and my bad.  They know that when I go out to a social function I am sucking it up and soldiering on; they know that I often have to pay the next day for the efforts of the previous day; they know that the times of activity only happen because of the 18 - 20 hours I spend per day in bed.  Others don't.

On Saturday TLOML and I went on the ferry to the bigger city on the mainland.  Foolishly I had overdone it quite badly on Thursday and Friday and I was (and still am) in the high range with both my constant pain and my breakthrough pain.  In anticipation I took my cane.  I think it is the first time I have used the cane on the island.  Here the stupidmarkets are tiny, the parking for everything is close, TLOML is almost always there to help me balance, and basically I have been able to get by without it.  Naturally we knew people on the ferry, (TLOML knows almost everyone everywhere)and though I caught a quick glance at the said walking stick in my left hand nothing was said.  Once in the city I used it to walk off the ferry to the car, then didn't pull it out again until we were at the SUPER mall.  I have to be really honest here, there just aren't all that many things I miss about the US;  I miss drive through banking; I miss the low cost of things there; ummmm... I miss the Interstates...  But there is one thing that I miss above all, one thing that stands out from the others like a hippy at a GOP convention... I miss with passion the courtesy motorized carts that were available even at my local stupidmarket.

Using one of the courtesy scooters was a VERY hard thing to do the first time.  I remember gazing enviously at those carts for a long time before a day came when I was just SO SORE and Sam's Club was SO BIG that I simply could no longer resist.  I was never a constant user, it always depended on my pain and fatigue levels, the potential length and complexity of the shopping experience, and if I was alone or if I had someone who could manage for me if I needed to get off my feet.  Saturday I longed for one of those courtesy scooters.  At first I was leaning on the trolley but then we bought the rather heavy punching bag (a birthday gift to TLOML's sweetheart younger son) and the trolley became too heavy, so I went back to the cane and handed the trolley over to TLOML.  I couldn't take waiting in the queue at Target so I waited on the kangaroo on the kiddie coin-op carousel.  I really wish Australia would catch up with the US as regards things like courtesy scooters, I would have been so relieved to have had one then and there!

So here I am going to yet another doctor, I'm worried that the invisibility of my condition might work against me, the usual worry.  It's an old problem and one that all of us with invisible conditions experience.  In Sydney when I went to the doctor I always used my cane.  It was necessary to walk alone from the parking which was quite distant but it was also a concrete and tangible symbol of the disability that is otherwise invisible.  I was also suffering a LOT of vertigo at that time and had the balance of a two-legged stool!  Now the vertigo has eased off somewhat and the parking is right outside the door, but I do need this doctor to understand.

It seems a lot to ask of a stranger, that they can understand something that I really don't understand myself.  I don't know why I can do almost anything for a short period of time, I don't know why I can carry a punching bag off the ferry and then have to go home and lie down to recover, I don't know why sometimes I can't make myself stand up straight when I get up out of bed, I don't know why sometimes I fall over for no real reason when I am trying so hard not to fall, I don't know why the urge to be horizontal is like an addiction or a craving, I just don't know...  Most days I can suck it up for a couple of hours and go out to a social event and only the most observant of people would ever know I was in pain - some days that would be impossible.

So do I walk in to the doctors office with my walking stick in hand and say hello to the receptionist who I last saw when we shared a bottle of bubbles at a fabulous pool party?

Pain Clinic Update

Well, today was the day...  I couldn't sleep and woke very early after probably 4 hours of broken sleep.  I was very early to the appointment but it did mean I got a great parking spot!  (I always say I will never win the lottery because I use up all my luck on finding parking spots!)  The hospital is huge and it was still a very long walk through to the clinic (I wonder why they don't have moving footways like the airport?).

First I saw a psychologist and answered about 4,672, no hang on it was 4,676, questions.  Next I was meant to see a physiotherapist but the physio was off sick so I ended up with a wait of about an hour and a half before seeing the doctor.  I didn't have to exaggerate the pain today, though it was still a pretty good day by and large, all the sitting around was really starting to take a toll by the time I got in to see the doctor.

The doctor was young and very muscular, he was also very understanding and quite irritated by his pager that went off at least 6 times in the hour I spent with him.  He was very sweet doing a trigger point examination; he apologized each time I squealed and had to be scraped off the ceiling.  He diagnosed me with... wait for it... I hope you are on the edge of your seats...

Fibromyalgia!

Well that was a huge surprise, not the diagnosis I have known that for ages - a medical facility where they believe in FMS!

He has decided to put me back on Lyrica, which did nothing for me in the four and a half months I took it in the US.  Who knows, though, the dose might be different, I might respond differently.  He is also putting in an order for me to go into hydrotherapy which I think might be terrific except that there is not going to be an opening until next year and ... well... with the developments in my personal life I may well be in a completely different part of the country by the time they get me scheduled in.

The Lyrica is not covered by the government pharmaceutical benefits program but because I got the script filled at the hospital they only charged me the benefits rate which is pretty cool!  It also means that I will have to get to the hospital pharmacy at least once a month which is rather inconvenient.  Not that I mind if the damn thing is helping!!!  I did get the script filled but I have decided not to start taking it until I see Professor McCool on Monday.  I just feel like I trust him more to make sure there are not any harmful interactions with the other stuff he has me taking.

By the time I got back to the car I was really dragging pretty badly and I was in a lot of pain.  Straight home to the blissful relief of being horizontal.  I even had a nap - something I almost never do in the day time.  I'm still feeling exhausted and pretty sore but that's it for appointments for this week.  Back on the treadmill again  with McCool on Monday and McLovely on Tuesday.

And now over to Displaced on the Health Check Desk

Well it was a beautiful day in Sydney to visit the Immunologist Professor McCool.  Good news on most fronts with several nasty conditions being ruled out.  Prediabetes was confirmed with findings of both high glucose and high insulin so dietary changes are in the cards for Displaced.  Hashimoto's reconfirmed (but with lower levels of antibodies which is interesting).   I also tested positive for Gastric Parietal Antibodies which can be associated with atrophic gastritis and with a B 12 deficiency (but my B 12 levels were ok).  (I thought there were only two Bananas in Pajamas, B1 and B2, -- who the hell knew they were up to twelve!!!)

Unfortunately the radiographers had not yet made the MRI report available but Cool McCool had a glance through the hard copies of the scans and said he couldn't see anything that wasn't meant to be there.  The thing in my brain that looked like a bobby pin was pronounced to be a flaw in the film not a miracle worthy of a Lifetime movie.

Off I staggered to the pathology department to have more bloods taken, only seven vials this time, among the things that are being tested for is Myasthenia Gravis (an auto immune condition meaning muscle weakness) and heaven only knows what else he is looking for.

I'm feeling ok about the results except for the prediabetes.  The best thing I can do for that is to exercise more but my muscles are so badly reactive to exercise at the moment I don't know how I am going to do that.  I got a pretty severe lecture from The Horsewoman about starting to change my diet and my activity level.  I'm still experiencing muscle weakness and pain on use from my activity on Friday night.  My arms are still super sore.  Otherwise a pretty good day!

Is you is, or is you ain't depressed?

Yesterday I had a bit of an argument with the psychologist I have been seeing,

She thinks that I'm depressed and I don't think that I am any more depressed than any intelligent person would be in my situation.  There's a lot of stuff going on in my life at the moment that is cause for concern.  Problems with housing, money, the government, oh and let's not forget the stress and uncertainty associated with my health.  There would be something wrong with me if I were vivacious, bright, bubbly and effervescent all the time! Quite frankly, if you take your car to the mechanic and you tell him what is wrong with it, is he or she very likely to turn around and tell you you sound like you hate your car?  Of course when I am at the psychologist I talk about the things that are bothering me!  I have been depressed, I've been down in the blackest parts of my soul.  Hell, I've hung out down there and had a good look around; stirred up the demons.  I know what depression feels like and this isn't it!

Perhaps I should be aiming to give a more fair and balanced account of my state of mind?  Maybe then people would stop asking me if I am thinking about hurting myself?  (This was asked at least 5 times last week which I must confess was a rather low week for me.)  More to the point I am concerned that if the medical professionals who are handling my case start to focus on the idea that I am depressed the next thing they will be saying is that the pain and fatigue (and all their nasty little friends) are all caused by depression and THAT is quite simply NOT the, case.  This pain has followed me, to a greater or lesser extent, through all kinds of emotions, through great highs and horrible lows, through hopeful excitement and abject misery.

Sooooooooo in view of the fact that it has been Thanksgiving in the US, the first Thanksgiving I have missed in a dozen years I am going to talk about some of the things that I am hopeful and excited about.

• I'm eagerly anticipating going back to University next year.  I see it as an opportunity to retrain into an area where I might be able to get high paying part-time work that I could participate in regardless of the effect of fibromyalgia (or whatever the hell this is).  I also see University as an opportunity for me to shine and to increase my pretty low self-esteem.  I have always done well in the past and I hope to do well again.  Furthermore it is an opportunity to meet bright, interesting people and to expand my social circle.
• I have been spending time with The Boy who is now looking at staying in Sydney and perhaps not moving to the UK for a while.  He makes me feel happy and proud and we are close and getting along well (complete with our usual bickering).
• I have rediscovered many of my old friends and I have been spending time with them and I have been feeling appreciated and cared for.  The Best Friend is like a shining beacon of warmth and support and makes me laugh hysterically every time we meet!
• The Reader is angling to get me some copy writing work which would be something I could comfortably do while lying down (which I spend 80% of my life doing).  This would help with my financial woes, and perhaps even my housing problems.
• Then, out of the blue, there is The New Connection with an old friend that seems to be blossoming into something tender and beautiful.  There is even a tiny little voice inside me that is asking ...? well... I'll pause that thought for now.  However she is coming to visit Sydney soon and I am very much looking forward to spending time with her when she is here.
• I have been seeing a really AWESOME group of doctors.  Dr McLovely is caring. helpful, compassionate and kind and Professor McCool is uber cool and is leaving no stone unturned.  While his investigations are hanging over me a bit at the moment I am definitely more hopeful than fearful.
• Today I had a telephone interview for a part-time job.  The good news is that it will not be until next year which gives me some time to resolve all the issues that are holding me back at the moment.  Hopefully by then I will also be feeling better and stronger and I'll be able to work this around my University studies.

Yesterday I had an MRI (ordered by McCool) so no more calling me brainless, ok?  I do have a brain I have a picture to prove it!  I will be seeing McCool on Monday afternoon and although I am frightened of some of the possibilities (and of him finding nothing) I am also excited and hopeful that there might be something that can be treated.  Naturally this is hanging over me to some extent... but I am honestly more hopeful than trepiditious. 

Anxiety, I will cop to, I do have issues with anxiety and stress is a huge trigger for me, but depression?  Not at the moment!

The Sophie's Choice of Illness...

I had an interesting conversation with the Immunologist today.  We were discussing the possible use of steroids to alleviate my pain.

He was a REALLY cool guy and I totally appreciated his direct, human approach especially when he said, after listening to my description of how I feel, "So you feel like shit?"
"YES!" I responded with more animation than my energy level appreciated.  I was just so, bloody, excited to have a specialist (a professor no less) really listen.

Anyway, the steroid discussion...  Now remember by now we have a rapport and I think he is shooting straight with me...

"Would you take ten years pain free if it meant that you would develop diabetes and die prematurely?"
"Ooooh, I'm not sure about that.  I only recently lost a close friend to complications from diabetes and it was not pretty."
"I would.  But that's just my personal opinion, it's an individual choice."


This is a conversation I could never in my weirdest, most intoxicated, most bad-acid-tripping dreams have imagined being a party to.

Fortunately for the moment it is a pre-conversation and I don't have to make that decision right now.

Tomorrow more bloods,  The pathology request form is literally so full of things he is testing for that he wrote in the margins and in the space above and then drew a big circle around it to make sure they knew they were all tests,  He chased (I use the term loosely because a greyhound really doesn't have to chase a snail) me out to the reception to add a few extras that had just occurred to him.  Some of the things he is testing for are pretty scary and for now I really don't want to get too freaked out about things like brain-eating antibodies and cancer-companion-inmuno-oddities,  so we'll just have to wait and see.  He did seem pretty interested in Sjogren's.  The good thing is he is looking and it could be good news if he found something and it could be good news if he didn't and it could be terrifying if he found some other thing and depressing if he finds nothing... so win/win - lose/lose who knows?

He is also sending me for an MRI of my brain - which no one has bothered to do before,  I know there is a brain in there, I have a picture to prove it, because I had an ear infection they thought was eating into my brain back in 2007 and they did a CAT scan then.

I think I will call him Professor McCool 'cause he was really a pretty cool dude, I might start calling him HOUSE if he figures this out!...He spent an hour and fifteen minutes with me and I think that is pretty amazing, all on the government health care system.

Any of my US friends who think that Universal Health Care would give you a lower standard of care than the system you have now is Captain Rats (sorry, you are certifiable).  In the USA I NEVER, even with full medical insurance, received this level of care or this degree of genuine inquiry AND in spite of paying huge amounts of money for coverage every paycheck I was still co-payed to death!!!  Health care is a business in the US and a service here... the whole mindset is different!  Not that it is perfect here, nothing is.  But a public patient nobody, like me, can still get in to see the best and brightest in the country and that is really quite impressive.

(PS Just Kidding about the acid trips)