I don’t have enough change in my life so once again I decided to change the theme of my blog. There aren’t a whole lot of WordPress themes to choose from, which is probably a good thing for me since I like to change these types of things,  I am still obsessing about the look/feel of this blog. I am crazy woman. I am the person that decides to move the furniture… RIGHT NOW. I am the person who decides that I want to be organized and need a new planner… RIGHT NOW. I need to get organized, therefore, I need to figure out a new file system, which requires new files, which requires a trip to the store…  I need to find a way to track my actions, so I need a new binder or a new planner or a new system or a new spiral notebook or a new ARGHHHHHHHHHHHHHHHH!!!!!!!!!!! WAKE ME UP OUT OF THIS CRAZY ASS NIGHTMARE!!!!!!! MAKE IT STOP!!!!!! Yes indeedy, I have ADHD… I have told you this before. Nothing like a little ADHD to go with your morning coffee. Or how about a little ADHD to go with your morning review of actions… it goes a little something like this:

Me…. reading email, drinking coffee… getting my brain engaged and ready for the day.

My ADHD: “hmmmm so much to do, how are you going to figure out how to prioritize all this stuff… I mean where do you even start?  You should start by prioritizing! You should figure out where to start… You can’t start until you prioritize. You have to prioritize before you start!”

Me: “Don’t do it.”

My ADHD:  “What do you mean don’t do it! You KNOW if you prioritize you’ll be organized.”

Me: “Don’t do it. IT’s A TRAP!”

My ADHD: “Puh-lease. A trap? I wouldn’t do that to you. I am here to help. WE are a TEAM. You need to prioritize. How are you going to prioritize?”

Me:  “Shit how am I going to prioritize? I gotta figure out how I’m going to prioritize! I gotta get a system.”

My ADHD: (whispers) “WINNER!”

Me an hour later…  “SHIT! SHIT! SHIT! I did it again!!!! Oh man I gotta stop getting distracted and focus.”

I have a system for capturing my actions. I just have to keep using it and getting off-track and letting myself get  distracted. It’s just another way of bringing me down and creating pain.

Tonight changing the theme on my blog was a nice distraction after a very long and painful day. My work has been very challenging since transitioning to my new job. It’s difficult to work the long hours and manage the pain.  So after a long day, the time I took to look at the themes and find and edit one of my photos for the header and put a new picture up of Tani… well, it was worth it.

This is the thing… if I can do one pleasurable activity a day, my depression should stay manageable. That’s the hope anyway. I think it’s working for the most part. I have learned this in my pain class. If I can manage the depression, it’s just one more way of helping to manage my pain. Once again, there’s always a connection.

I can manage through the pain. For me, this is my life. In other words, if I accept this is my life, then I will continue to LIVE. I won’t let the pain take me away from living. If I wait until I feel good and there’s no pain to do anything… I may never be able to leave my house! It’s easier said than done… but we all work on this every day, right?

So this post is kind of all over the place, but sometimes it’s just like that! I can’t help how my brain works. I mean you just get to read this… I’m livin’ it 24/7! I started writing and I honestly thought I was going to write about something completely different and ended up, well… here.

I hope you enjoyed it. Thanks for reading! I hope you leave a comment, I really appreciate hearing from you!

Stay super cool!

As I sit in the dark,
looking over the past decade of agony,
I cannot but help feeling…
Lost
Angry
Heartsick
And broken.

There was a time I was a young God in the sun!
Everything I wished was mine for the taking.
Anything.  Anywhere.  Anytime.
There was very little I could not have.

It came on suddenly.
A knife stroke from a demon hand,
Hidden in plain daylight.
And then began the real battle…

Every movement, every breath
Fought for with grim determination.
At the cost of yet another small piece of me.
An offering, as it were, to that demon ravener stalking me.

Step by step, inch by ragged inch,’
I gave way before its merciless onslaught.
Unwavering in its burning hatred,
It sought nothing less than the total dissolutionment
Of all I ever was or could have been.

The past ten years have been a rearguard action.
Striving to hold on to my sanity,
As my physical self was slowly mutilated;
Inch, by yard, by jagged, tearing slice.

I once held my dreams in my very hands.
And have been forced to watch them
Pour out through my fingers like
Arid bits of bloody sand….

Children who are bullies, disobedient and prone to bunking off school are more likely to suffer chronic pain when they grow up, according to a study. (Read the full article here).

Researchers say their investigation found the same is true for any sort of behavioural problems, including stealing, lying and worrying, or children who are anti-social and restless.

The team from the University of Aberdeen and UCL’s Institute of Child Health in London say children with severe behavioural problems are at approximately double the risk of chronic widespread pain by the time they are 45 than children without such problems.

Lead author, Dr Dong Pang, an epidemiologist at the University of Aberdeen, says an early breakdown in the interaction between the nervous system and hormones may explain the link.

The study appears in the journal Rheumatology.

INTRODUCTION

Tendonitis:  Inflammation of tendons and tendon muscle attachments
Occupational and sports-related injuries, tendonitis is the most common diagnosis
Literature has a common theme on the cause:

• Microinjuries of the tendon resulting from repetitive mechanical load
• Injury exceeds ability of the tendon to heal itself
• May also result from improper training techniques or improper use of equipment

Treatment consists of:

• Controlling inflammation using anti-inflammatory medications and ice
• Flexibility and strength of the involved tendon addressed to promote more functional healing and to prevent recurrence
• Address other factors such as technique and equipment changes

DIAGNOSIS

Diagnosis is difficult to make precise due to the fact that many different terms used to describe the same problem.

Chronic tendon injury:  Most studies showed a degenerative lesion without inflammatory changes (biopsy taken pre-surgery)

Cumulative trauma disorder

Repetitive strain injury

Tendonitis:  Inflammatory problem of the tendon itself.  No evidence to support it being caused by repetitive load

EXTRINSIC OF INTRINSIC FACTORS

Tendonitis was classically described as an overuse injury, but the current literature has been showing that the cause is much more complex than that.  Tendonitis can be due to excessive intensity and duration of activity, as most overuse injuries are, however, it is also often accompanied with training errors, inappropriate footwear, inflexibility, weakness, and malposition.  One of the most obvious intrinsic factors is age (30-50) and blood supply to the tendons.

COMMON TENDON INJURIES

Achilles Tendonitis – Usually presents as an insertional tendonopathy, where the 3 tendons of soleus, gastrocs, and plantaris come together to form the Achilles tendon and insert on the back of the heel.  Signs and symptoms include local pain and tenderness at the site of involvement, as well as swelling of the tendon.

Posterior Tibial Tendonitis – Usually an age-related degenerative tendonopathy that occurs in the mid-substance of the tendon as it courses along the inside of the back of the foot.  Signs and symptoms include medial foot pain, which may progress to a painful flat foot as the tendon weakens.

Patellar and Quadriceps Tendonitis – Occurs in patients that often do running or jumping activities.  Signs and symptoms include pain at the lower part of the patella (patellar tendonopathy), or pain at the upper part of the patella (Quadriceps tendonopathy).

Lateral Epicondylitis – Insertional tendonopathy of the insertion of the wrist extensors at the lateral epicondyle of the humerus.  Signs and symptoms include pain with the use of hand and wrist, and localized tenderness at the lateral epicondyle.

Rotator Cuff tendonitis – Can be insertional at the greater tuberosity or impingement under the acromion.  Signs and symptoms include pain with use of the shoulder, as well as positive orthopedic tests.

TREATMENT

Overuse, training injuries, inappropriate equipment can often be treated with rest, and alteration of training techniques.  The flexibility can be addressed through a rigorous stretching program that can involve a technique known as PNF (proprioceptive neuromuscular facilitation). Your chiropractor can examine shoes, for example, and assess for orthotics, recommend physical and exercise therapy which will help with influencing strength, flexibility, and help to get an increases in range of motion.

Shockwave therapy is usually the first choice for tendonitis, and the usual treatment regime includes about 1 treatment per week, for about 5 weeks, with another treatment at 1 month later (if warranted).  Laser therapy can also be useful, and a typical treatment regime would include 3 sessions per week, for 3-4 weeks.  Both of these modalities stimulate tissue healing in different ways.  Soft tissue therapy can help break up scar tissue and promote optimal healing of the injured structures by aligning the fibres correctly.  Acupuncture can also be useful for pain control as well as muscle and general relaxation.

REFERENCES

Alemkinders, L. 1998.  Tendonitis and Other Chronic Tendonopathies.  Journal of the American Academy of Orthopedic Surgeons. 6(3):  157-164

Alemkinders, L. and Temple, J. 1998.  Etiology, diagnosis, and treatment of tendonitis:  an analysis of the literature.  Medicine and Science in Sports and Exercise.  30(8):  1183-1190

Well, I’ve managed to lose 10 lbs. and can fit back into my pinstripe work slacks, which is a good thing. They’re still a tad snug around the thighs, but then again, most things are. I really need to lose at least another 10, and then do some serious work-clothes shopping. We’ll see how that goes, heh.

I also had my hair trimmed yesterday, despite the fact that I have no clue what I want my hair to look like. Mostly I am trying to keep it neat until I can decide, although I dreamt that a friend put hot pink and white-blonde highlights in my hair while I was asleep and it looked awesome! I need a way to carry dream-land things into the real world, like sparkly tattoos. In the mundane world, however, I am thinking of lighter, strawberry-blonde highlights eventually. Not nearly as exciting.

I am trying to wear suit jackets at work more often, and remember to wear some of the lovely brooches I have. I still fail at makeup however- I’m lucky if I remember chapstick. Also, my eyebrows have gone white blonde and are falling out, which makes my red hair look a bit odd. There’s not much I can do about it until we get my thyroid back on track, though. I thought about dyeing them, but they’re already falling out, so it would only be a temporary fix. Foo.

Finally, my current favourite work shoes are already wearing out. I really need to get out of the habit of wearing the same shoes every single day until they fall off my feet. But they’re so comfortable! Ah well, time to start the search again.

In health news, my back has been a solid sheet of discomfort from the base of my skull, wrapping over my shoulder caps and all the way down to my tailbone. I have been doing as much as I can but broke down and took prednisone last night. As infrequent treatment it’s not too bad, but it is my gesture of last resort, and I worry that back/neck/shoulder issues are going to make travelling miserable. I really need a heating sheet, because one pad just isn’t large enough or flexible enough to cover my entire back.

Image from We Heart It

Sorry Everyone,

I had intended on getting at least one good post out of myself, but I have accepted that it just won’t happen today .  Maybe tomorrow I will write my Pulitzer winning post? (I am SOOOO kidding y’all!  If you can’t laugh at yourself, WHO can you laugh at?)

This migraine is kicking my butt… and it has really taken hold of my jaw and neck… I am going to have to pay my chiropractor a visit tomorrow morning and ask him for some help…. Each time I move my right shoulder, I get fireworks going off in my head and neck… it is just going from bad to worse, and it’s time to stop fighting and just sit with it until I can get some help from my AMAZING chiro!  You know you are in bad shape when you would GLADLY have your chiropractor manually stretch and release trigger points INSIDE your mouth than be given a trip to the spa… that is where I am at right now…. OUCH!!! I will exchange a really GOOD hurt over this hurt any day!

I am still holding up okay, but this is 4 days straight now, and I am starting to lose steam….. There is only so much we can do on our own before we have to reach outside ourselves.. I have tried everything.. stretching, heat, ice, baths, showers, dietary changes, yoga, deep breathing, doing the hokey pokey… I put my right foot in and I did shake it all about, it didn’t work.  I swear, is there something I am missing?

Do you find that once a certain part of your body acts up, it sets off a chain reaction? This all started with a sore back and shoulder, then my back pain went away, and it was ALL in my shoulder…. then it moved quickly into my neck… and now I honestly can’t say where one starts and another ends… everything is SOOO tight and twisted… blah…  And on top of my nerve pain, and “normal” pain, I think I might go loony tunes soon!!  (I promise, if I go anywhere, I will invite y’all along with me!)

Sorry to all who was expecting some sort of togetherness today on my part   but it ain’t gonna happen.  I feel badly because the past few days I have not been blogging the way I normally do… I just need to get myself in order, and then I will be back to my fun-loving sore self – instead of my crankypants desperate self

So I am off to lay down AGAIN with another ice pack, heating pad, book, and a prayer….  I need for this migraine to GO AWAY!!!!!  There, I told it!!  Do you think it will listen?!?

Hugs and my love to all of you… thanks for letting my rant a little… sometimes it is good medicine.

**If you are reading this anywhere other than www.gracefulagony.wordpress.com it is because this post has been stolen.  Please click on the link provided to return to the site of origin

I thought about putting a warning at the start of this post, because if you’re enthusiastic, passionate, committed to good pain management, what I’m about to write may make you weep!  It’s about systems and missed opportunities and the effect this has on patients.  NB: this post is my personal opinion, does not reflect the opinions of my employers, children, partner, dog or cat.  I am not referring to any specific centre or service, and nothing in this post should be construed as anything other than opinion (although I’ll happily provide facts on request).

Did you know that in New Zealand, one in six people has an arthritic or painful health condition?  And that the financial costs are thought to be around NZ$2.5 billion, financial costs comprise health sector costs and indirect costs.  This doesn’t include the dollar value placed on the burden of disease, or the years of healthy life lost, which is estimated to be NZ$2.56 billion.  That’s a whole lot of money! (Figures drawn from Access Economics report for Arthritis New Zealand, prepared in 2005).

This estimate also doesn’t account for the additional costs of chronic pain from non-arthritic conditions, such as complex regional pain syndrome, chronic low back pain, abdominal pain, pelvic pain, non-cardiac chest pain and so on.

You’d think, well I would anyway, that with this sort of analysis showing the horrendous cost of these diseases that there would be a national strategy for managing pain, and that every New Zealand District Health Board would have a consistent and well-funded approach to address the needs of people with these disorders.  I’m sorry, there is no such thing.  When I reviewed the referrals to a pain management centre recently, the average duration of pain was between 2 and 5 years, and the majority of people were no longer working as a result of their pain.

What causes this sort of delay in referring people for pain management?  I wish I could tell you.

What’s interesting is that even though the average pain duration is 2 – 5 years, half of those referrals were for people who had already been seen at that centre.  An even greater tragedy? Some of the new referrals will be turned away because they will be waiting more than 6 months to be seen, while others will be accepted not because of the greater burden of disease, but because of their funding source.  And clinicians are asked to overlook this discrepancy in serving the needs of people because that funding source provides income, but that income isn’t streamed back into that specific service  (it goes into the general coffers).

Some curious things to ponder…

• Collecting information on who refers to pain management and what the referral characteristics are isn’t being done
• There doesn’t appear to be any review of the re-referrals – why are people who have been seen being referred again? What initiates a new referral?
• While there is a database of psychometric information on people being assessed, this isn’t being analysed except on an individual case-by-case basis
• The goals identified by people attending for comprehensive assessment are primarily around reducing or removing pain – but pain is often reduced by only a small amount

I could go on – the problem is, these issues are not new.  In fact, they’ve been raised many times with managers.

I suppose I shouldn’t be disheartened.  Pain management services are often the ‘Cinderella’ servicein health  – everyone wants someone else to take care of these people, but no-one is very keen to admit that they haven’t been able to ‘cure’ the problem.  And the costs of health care in this group are, as you can see, very high.  But they’re hidden because these people are present in every service in every sector of health in every town and city – so the costs just look like part of doing health care.

If I had a wand, this is what I’d wish for:

• analysis of the pathways to pain management – from community to treatment facility and back again
• a systems approach to identifying these pathways and looking at ways to streamline access
• a stepped care approach starting in the community with a psychosocial risk factors intervention included in any biomedical input
• close integration of tertiary level treatment with primary level follow-up
• a forum for helping people with multiple diagnoses – problems managing pain is associated also with prescribed and nonprescribed drug use and abuse, mental health problems and work disability
• outcome measurement alongside careful collection and analysis of information about the people being referred so that services can be integrated and matched with need and the outcomes achieved

The thing is, pain management is often captured by people with a particular agenda.  I don’t think it’s always about health care providers being greedy and wanting to make money, although I acknowledge there are some unscrupulous people doing just this.  I do think it’s about dogma and believing that there is Only One Solution.  I also think people can be very fearful of transparency – especially transparency in outcomes.  There’s no doubt that pain management is complex, and that it can be really difficult to review the burgeoning literature on what works for whom and when.  But this shouldn’t excuse poor science – it’s more of a reason for really good knowledge of science and learning to read the literature very, very carefully, and using data as the basis for decisions.

We also need to remember that pain is a political motivator.  People in pain, and especially distressed people in pain, can capture the hearts and minds of those around them – especially the media.  It’s not uncommon to see articles in the media about a person who has been denied some sort of service and learn about the incredible pain they’re in.  Media-savvy patients can pull political strings very easily.

But managing pain is not a sexy political topic.  It’s plain hard work, it’s often a slow process to systematically work through a series of treatment ‘experiments’ to establish the one that provides the most benefit with the least negative effect.  And even when something is ’successful’, it rarely completely abolishes pain, so people with chronic pain can feel disillusioned.  Some get very angry when they find that there simply is no medication that ‘takes the pain away’ and that they will ultimately learn to ‘live with’ their pain.  This is sad – it’s more sad when they don’t hear that there is a team of people who can help them learn to ‘live well with pain’.  And even more sad if some of those treatment providers don’t use the scientifically established treatments that are known to have a good effect but instead prefer to use unsubstantiated treatments that rely on chi or similar woo.

Maybe I’m being pessimistic, but I see service fragmentation, no attention to outcome measurement, capture of various groups of patients by health professionals and limited transparency about what is being done and whether it works as a tragedy.  As if it wasn’t bad enough to have a chronic pain problem, for some people, the ‘best’ treatment they get just doesn’t cut it.  Surely we can do better than this.

Well, where do I begin? I have spent the last six months on a rollercoaster – you really couldn’t write what has been occurin’ since my last post. So maybe one day I will – I’m sure my life will flavour a good number of stories and articles for the forseeable future and may even help me towards the novel I keep threatening.

Sometimes life throws things at you and you really don’t think you’re going to be able to get back up again. That’s where I’ve been. The last six months have been the most recent nightmare in a series of nightmares that started four years ago.

I’ve tried to imagine how my life could be if I walked away from those elements that make my life a daily struggle. I’ve played over in my mind how life could be should I live elsewhere, work differently, love differently . . . I’ve imagined a different country, a different career, a solitary existence by the sea with only my cats for company.

 In the past, my life was simple. I worked each day as a primary teacherand spent my evenings and weekends in the company of dear friends and the man I adored. I had money, freedom, theatre and concert tickets whenever I liked, regular city breaks and an expendable income. Not at all was it ever about the money, but my money gave me the independence I had craved from being a child.

Yet in time, I wanted different things. We loved the city, but we wanted a family. I wanted to be a writer. I wanted to be nearer the countryside, the sea and to be away from pollution. Some of the children I taught were among the poorest and most polluted in the country. We had high incidences of asthma and allergies in the young and a handful of children I had taught were making the news years later, their deaths becoming the latest on the list of London’s knife crime related fatalities.  If we wanted a family, we would have to move. We could wait until the children reached school age, there was no real rush, but we knew it was inevitable. We would have to sacrifice our London life in order to bring up our children the way we wanted to.

So I had my family. Two boys within two years. Two very difficult pregnancies, the first of which we learned later had almost resulted in us losing our first born. I will in time elaborate, but huge levels of negligence resulted in quite major physical damage and with my two chidren I lost my health. My pelvis fractured and was undetected for a year. In that time, I had to stop working and we had to relocate to Yorkshire, back to family. This was something we had always wanted to do in time, but not under these circumstances!

I lost my career – my deputy head training, my NPQH training I was so looking forward to was gone. No career. I lost my independence. Financially, I became dependant on others. I had moved away from the city and away from my friends. For three long years, I was at the mercy of doctors and consultants who filled my full of addictive substances and put me through painful procedures. At the time I was terrified, lost and hopeless. I had no future. I wished for a terminal illness, to put me and my loved ones out of pain.

Then, infidelity struck. The one last vestige of my life, the one thing I clung to was my marriage. And that, it seemed, was gone too. The one thing I never imagined happening, happened. It isn’t the worst thing that can happen to you. But it’s up there.

But  instead of running away from him, of throwing him out and showing him who was boss, I let him stay. I didn’t want him to go. But I didn’t want us to continue as we were. We talked and talked. Often, it was very painful and we would tell each other how we would be better off alone. But we didn’t mean it. I read an article some months later which said that staying together is not for the faint hearted. How very true. We showed each other we at least had staying power. Maybe being apart would have been easier. But in time, I learned that being together was what was right.

However terrible things had been for me, my husband had been through his own nightmare too. He’d watched his wife slip away from being someone who lived life at full pelt - leaving the house each school day at 7.30 each morning to return home twelve hours later with a bottle of wine and stories of her day at school,then busy weekends at galleries, the cinema, music and theatre events, meals out with a crowd. He watched his wife become so full of medication that she sat at home day after day, rarely able to leave the house. He had become the main breadwinner, main carer at times. With two children under four, he had struggled to come to terms with what was happening. His wife was depressed, suicidal at times, fearful and often tried to push him away, suggesting he should go. They were awful times.

And as there always tends to be, a little receptionist with no baggage, no brains, no personality and no conscience reared her ugly, no that’s unfair, plain-jane little head and fluttered her eyelashes. The rest, as they say, is all too obvious.

Was that enough to throw away a marriage? He was in so much of a mess by this point that he didn’t know what he was doing. His life was a mess because my life had competely crumbled. When asked “What were you thinking?”, he merely replied “I didn’t think.” Because in these circumstances, men rarely do. The opportunity is there and so these things happen.

If I had not become ill, had not lost my job etc etc, would he have had an affair? I really don’t know. I really don’t. I like to think that in my late 30s as a ‘well-woman’ I would have been so full of life and excitement, engaging, wealthy and well-groomed that he wouldn’t have needed to look elsewhere. I’m sorry he did. And I know he’s sorry he did too.

However. If the tables had been turned, would I have done the same to him? I am sure I wouldn’t have. But he did. And he never thought he would, So, until you walk a day in another person’s shoes, I suppose you don’t know how you would behave.

Slowly, life is improving. My medication has changed and I have recently started to come out of the fog I’ve been swimming in for the last four years. Our children are gentle, thoughtful, caring and full of fun and have adapted very well through all the stages of Mummy on crutches, in a wheelchair, in and out of hospital and the changes my lessening mobility has caused for them over the years. Even my mummymobile – a red scooter which I hate with a passion but which enables me to take the boys to school each day – hasn’t fazed them. As a family, we’re becoming much stronger and I know we’ll be okay. What doesn’t kill you makes you stronger. Isn’t that what they say? I just know that LOVE is what gets you through. Nothing else matters in the end.