A year of contrasts, contradiction and discovery

Well, its a funny thing this isnt it, its 5am, Im wide awake again, eating a chocolate snowman that santa gave me, in fact I just ate his head, and I find myself thinking back over the year as so many of us do as we see one rolling to a close.

Its truly been a year of discovery for me, and not really quite what I expected either this time last year, but nevertherless one of great learning and understanding of the human conditions.

Its also been a year of contradictions -  quite litterally:
1) approval and criticism - Ive been 'given approval', in fact actively encouraged to write this blog and on the flip side critisised for being too open, public and sharing all my 'private' matters with the world. So, it seems that people are divided on my sharing my illness in this way.

2) supported and abandoned/dropped - many have seen my illness and the pain Ive been in as something to share, help and hold my hand (some litterally, others verbally) on this journey, in fact a couple of old friends have shown their true colours and given me wonderful support, and even a group of new ones have been there too -  some conversely have decided that its not worth the bother and those that I thought were particularly close to me in the past couple of years have 'abandoned me'. (nb: moment of self pity whilst I peruse the list of 'close friends' who have barely spoken to me all year......I guess they werent so close after all and I was just dim for assuming that they even gave a s&*t about me, either that or they are those 'good time people' who only want to spend time with fit and healthy fun people(see earlier blog post)! -  thank god for REAL friends  -  you know, the ones who hold your hand through thick and thin, good and bad, illness and health .  And yes I am aware that in writing this Im even less likely to actually hear from some people as they take massive further offence at my public moanings......ho hum, I guess its what they call in meditation as 'cutting the cords' -  letting people go  -  although actually that is meant to be with sympathy and love and forgiveness. DO I forgive them  for hurting me?.......YES (although they probably think they should be the ones to forgive me and that Im being incredibly patronising by even suggesting that they hurt me!). I have to. Id be heart broken otherwise. Depression is hard enough to deal with without having to feel bad about all those people hating me as well. I have come to realise that some people just pass through your life -  REASON, SEASON, LIFETIME!. Some, conversely, stick around, and some love you no matter what!. As I mentioned in a previous blog -  its something to do with survival of the fittest - some people simply cant cope with sick people or those struggling with stuff. Those of us that have had to deal with those things perhaps are a bit more self aware and more able to be compassionate, understand and stick with it, and support and understand those who need it.

3) Ive liked and lost and learned. Back in June when I was diagnosed I was going out with a chap who all he wanted was a stable relationship and to settle down -  just not with someone who was sick! That one rocked my world as I contended with both a diagnosis and being 'dumped' for it -  on the same day!!!.......honestly, it made me feel utterly unlovable and like no one would ever want to spend time with someone as broken as I - and I thought love was supposed to overcome that stuff. Again, in counter to that I was told by a lovely man that I was like fine china and could still be loved and cared for, just a bit more delicate than the standard dishwasher fare that we use day to day! (I always knew I was the royal doulton stuff and not ikea ;-)

4) time flies, and can go SOO slowly. With months of staring at ceilings lying down, drugged out of my mind on painkillers, time has seemed to stop at times. I couldnt focus on the tv, reading a book, barely could a magazine hold my attention for more than 5 mins at a time, would forget what I was saying half way through a sentance. Time seemed to float and drift in a bubble of nothingness. And yet I have no idea where this year has gone. Its disappeared so fast, I feel as though I have lost whole months of my life (in fairness I lost 5 to severe painkillers and morphine!) I know as we get older, time seems to speed up. Im used to filling my life with events adventure, people and places to justify the speed at which time seems to pass. Its been a quiet year on at least 3 of those 4 for me this year!

5)Highs and lows - god this one covers everything.
Firstly - diagnosis highs, followed by further opinions that disqualify previous theories or disagree with previous thoughts leading to lows of new things to deal with, more tests, more hospitals and more disagreement as to how, what and why!
Secondly, love and hate. I love my friends dearly and believe I am loyal and honest with them, perhaps my fault here is I say what I feel -  at least im what I say on the tin and not a bullshit artist specialising in hoodwinking and pandering to people. I find myself feeling constantly hurt and low by peoples actions, possibly I have bought this on myself and deserve it, but there seems such a willingness amongst some to just drop you at the first sign of disagreement, illness, sadness, weakness, disapproval. Maybe life is too fast now and we chuck away friends like we chuck away white goods -  we cant keep up with everyone so have to find the smallest reason to cull and cut back to make our worlds more manageable for our own shit to be dealt with! people are as disposable as broken gadets! hence there seems to be a lot of hate. that makes me sad.
Thirdly - kindness and bitterness - the highs and lows like sugar rushes from eating too many chocolate snowmen no doubt!  one seems to trade the other. like happiness and jealousy! if you are happy someone is always jealous. if you are kind or have experienced kindness, then someone will try and kill it with bitterness and nastiness. these are lifes balances and I guess we wouldnt appreaciate the good stuff it the bad didnt also happen.
fourthly - pain and no pain -  drug induced coma type bluriness of cotton wool and marshmallows and fluffy clouds, followed by the neausea of trying to stand up or roll over, stabbing pain, muscle spasm and feint head as you roll back in a screech of dismay.
fifthly -  work and no work, brain and no brain, engagement and boredom, productive and unproductive, tasks and teams and none of these. These are the contrasts and highs and lows of being off work incapacitated. Getting back to work, my team, my friends there has been a total joy. I never realised how important a nice job, good colleagues and getting stuff done and feeling needed by that was so important -  perhaps I took it for granted before, perhaps I didnt really like my job (I do now) and perhaps I didnt appreciate what I had  -  but I certainly do now.

And finally glass half full (never half empty!) -  I have certainly proved to myself that despite all the crap this year (and in previous others) that Im definitely a glass half full optimistic type of person. Ive endured some shitty stuff and come through it all -  I was attacked and beaten up living in Russia years ago, Im divorced, Ive dealt with alcoholism(not me but someone close to me who suffers), depression (family friends and self!), verbal and mental abuse and a lot of pain, sadness and illness around me and with me my family and friends. BUT what I do know is that I climbed a mountain last year despite back pain that I thought would destroy me. I did it against my own odds. I recovered from all the items above and have learnt from them. out of something shit always comes something good.
People are generally good, but often stressed, confused, hormonal, in pain, having a bad day, lost and therefore it might be something other than what you think, that is upsetting them and hence affecting you!
If you smile people cant help but smile back. If someone is having a bad day, ask them if they are and they will be surprised that you even noticed.
If you complain people are more likely to dismiss you.
Most people hate hearing the truth, so either dont tell them or know that if you do they will probably react badly to it, so accept your choice to tell them  unless of course you are telling them how fabulous and wonderful and important to you they are!
We have a choice with everything we do and everything we say, to whom and when and how. We dont have to be victims in our own little worlds, we can take control and do our best to combat everything that is thrown at us.

My new years reslolutions are to focus on compassion, health and wellbeing, and of course LOVE. I will forgive and forget and pray/ hope that others will overlook my shortcomings too.

a 3rd opinion - another a new diagnosis - were the others wrong!

So only a couple of weeks ago I was celebrating a diagnosis that in fact seemed like it was quite reasonable. However, this was from the osteoporosis specialist in rheumatology (bones and joints) -  and now I have seen an endocrinologist (hormones, blood chemistry and how the body reacts to stuff)!

Dr COx is a dream. ok so he is quite tall and good looking too, so that is a huge plus, but he is the first doctor to take such a full history, look at my tongue, pulse, reactions, backpain, skin condition, liver, kidneys  -  you name it he tested it! it was THE most reassuring medical interview of all. (and he spent 40 mins with me rather than the 10 or 15 I got in diagnosis from the other 2!)

Now, as I mentioned before -  Fogleman had said it was genetic, and not only that but when he wrote to me afterwards actually had the cheek to add that he thought I had been 'unlucky' with so many breaks and perhaps accident prone, and had no idea why I ahd had so many breaks and that it was unheard of in his experience!!!. So he dropped about 10 miles into the depths of the earth in my opinion. NO NORMAL PERSON breaks from a hug for gods sake!that is not just unlucky! thats a major problem in my opinion! SO the temporary excitment of a couple of weeks ago had descimated into no mans land of somewhat disgruntlement.

But, then I have a final appointment this year with Dr COX. After a VERY long wait to see him, he reviewed all my previous tests and as I said, looked in to all the other aspects of what might actually be CAUSING this problem and not just dismissed it as bad luck or unfortunate or even just low bone density all along.
SO what was the outcome!?

Where he did agree is that the depo provera is a likely catalyst for me in decreasing my bone density so rapidly. he also siad their is a small chance that I might have had low bone density all along, but given how robust I ahve been until more recently, with a lot of sports, adventures and exercise that he feels that is more unlikely. He is looking at the hormones, the blood quality, urine, the overall chemistry of how the body reacts to drugs, food, illness, stress, you name it, basically how the body is changing in these conditions.
He feels the long period of stress in my life over the past 10 years has been a factor, the depo is a factor, but he was VERY concerned about the bruising I have suffered all my life (not normal at all apparently!) the migraines are a factor, and previous breaks and illnesses such as obshgood schlater disease I got when I was growing (in my knees) are all indicators of something else going wrong in my body! It is a great comfort to me that this man actually wants to understand WHY and not just diagnose me with a problem and then brush me off!

He also agrees that there is no current relevent drug that will help me -  all the biphosphenates are horrid as mentioned before,and he says would be far too disruptive to my body in the immediate term, especially if I still want kids at any point in the next few years. the only option, should I continue to suffer breakages is to take a hyper parathyriod drug that helps increase bone density rapidly, but that I should have in high levels and only for a short time. but he said it would make me feel ill due to the dose levels -  there is always a trade off I guess. He does believe that my bone levels are significantly low to be greatly concerned and that I should be very careful and even expect more breaks -  so perhaps skiing is not such a great idea just yet.

Finally he does believe that now Im off the depo and that my cycle has returened that my body will start to regenerate some of my bone density on its own. Basically the depo shuts down the production of oestrogen, and s bone loss is caused by the calcuim being pulled from the bones to suport the hormone system in the meantime. With the return of oestrogen (and much to alls surprise - a significant increase in bra size!) my body can then focus on keeping the calcuim in my bones and even restoring it to more normal levels. by contiuning to take the K, magnesium and calcium this will be encouraged further. so 2 glasses of milk to be drunk a day and continue with my suplements and the Vitamin d now to be taken every 2 weeks instead.

In january I have to have a spine xray - he is concenred that the damage in my back is in fact due to fractures there too, so best to rule it out if possible. that would certainly explain an awful lot f the back pain I have had over the years!
I have to do 2 days of urine collection and tests, with a number of steroid and blood tests to test my bodies' reaction to various things and how it combats or not certain things like changing hormones.
It means January and the new year will be starting with a whole new round of hospital visits, needles and machines, as well as hours more in waiting rooms and so forth, but it is encouraging that this doctor really wants to know what is going on.

SO a final step towards actually finding out how in 18 months a person can endure 21 fractures and breaks in their ribs (and possibly now my spine too!)

onwards.........................................

some tips for living and dealing and managing OP naturally

Im am an advocate of trying where possible to stay off drugs that we dont really understand the long term effects of. Therefore I constantly look for articles and new and interesting research on how to live with this disease. Diet, exercise and general health and positivity are of course all major factors.

Jack Kruse is a physician who specialises in OP and says the following :

"Osteoporosis is conventionally thought of as a disease of aging.  That has to stop because it is old school conventional wisdom.  What is closer to the truth is the patients diet.  The worse the patients diet is the more likely osteoporosis will be present regardless of age.  The younger generation has massive unrecognized osteopenia present because they have lived surrounded by processed food.  This is due to the SAD which causes high inflammation levels, low vitamin D levels (from lack of D in the diet), pregnenolone steal syndrome (reducing formation of D in body) and liberal use of sunblock and lack of outdoor activity to gain sun exposure.




WHAT IS THE OSTEOPOROSIS RX TREATMENT:

1.  Cortisol must be neutralized after its elevation can be found.  The most common reason is LR today in the USA from a SAD loaded in carbohydrates.  LR nullifies Wolff’s law.  Diet modification to a high fat and high protein paleolithic diet is treatment option number one in most cases.  Renal osteodystrohy is one of the few causes where protein has to be limited, but fats can be used liberally to support bone mass.  Pastured butter (K2 source) and grass fed meats with eggs and bacon and coconut oil is preferred.  All the hormones that are anabolic for bone formation are derived from LDL cholesterol in our diet.  Vegans should pay close attention to those biologic facts.  PUFA’s and carbohydrates should be extremely limited during treatment to avoid future fractures because they generate inflammatory cytokines that favor disease progression.

2.  Age and weight are not completely indicative of real bone risk.  Inflammation is and it should be followed clinically to assess risk.  Bone density testing is worthless unless a wrist module is added to it.  I have had patients in their 20’s paralyzed from osteopenic fractures.

3.  Smoking carries a 100 fold risk of developing osteoporosis. It must cease for any treatment to work

4.  Excessive drinking also elevates the risk.  More than 4 oz a day is a problem.

5.  I personally avoid all conventional osteoporotic drugs because of side effect risks.  In surgical cases I now completely avoid the use of all synthetic derived bone morphogenic proteins in older patients with osteoporosis.  (InFuse by Medtronic)

6.  I use high dose Vitamin D3, K2, Magnesium, in doses based upon lab data and  on the severity of disease.

7.  I replace all sex steroid hormones to the top quartile found in young adults.  Bio-identical HRT are preferred.  I avoid synthetic hormones at all costs.  Often this is tough because many physicians are not aware of the organic chemistry of why synthetic hormones are suboptimal for the human steroid receptor.

8.  Exercise is an excellent treatment for osteoporosis.  But one must remember that if one has LR exercise exacerbates the risk of fracture because Wolff’s law is null and void.  The Exercise Rx (written below) requires Wolff’s law to be operational to work.  Too often it is not.  Exercise will increase growth hormone secretion which is very anabolic for bone mass accrual.  Most older people have horrendous GH levels measured by IGF-1 levels.  In people with IGF-1 levels below 100,  I recommend use of arginine, ornathine, turmeric and resveratrol because all increase bone mass.  Resveratrol increases bone morphogenic proteins directly.

9.  Walking is a great start for those who are debilitated..  I tell my patients to park far away from doors to facilitate walking.  I encourage water aerobics because of its low impact and its good skeletal effect’s even when Wolff’s law is null and void.  I also encourage yoga and meditation for endogenous control of cortisol.  Biofeedback is also a consideration if it is in the budget.

10.  Strict avoidance of NSAID’s and steroids for all osteopenics or spine fusions die to bone mass losses.  These medications also cause a leaky gut and gut dysbiosis is a major cause of persistent inflammation and bone loss.

11.  Any stressor should be aggressively treated.  I usually will double doses of D3, K2 and Mg during ICU or the preoperative times.

12.  In older patients I trim back all meds that cause osteoporosis and I advocate strongly for hormone replacement.  Progesterone is the critical for women and testosterone for men.  Estrogen and testosterone are added often to women’s treatment plan by their PCP’s or Ob/GYN’s

13.  I try to limit radiation exposure to all patients with osteopenia because of its effects on bone stock.

14.  I have all thoracic fracture patients follow up with their lung specialists because each fracture limits pulmonary functioning by 5-8% and is a major cause of disability.

15.  Any spine fracture should be aggressively treated surgically as soon as it is diagnosed on STIR MRI.

16.  I keep an open dialogue with patients and family about bone risks going forward and make sure they know what to discuss with their PCP’s going forward.

17.  An ounce of prevention really saves a point of cure with this disease. Mobiltity is the key to optimal recovery.  We want patients moving naturally as soon as possible to stimulate bone formation after the diet is optimized.

18.  I do not advocate any use of Calcium with this disease because I mandate a change of diet and this diet provides ample Calcium and there is no need for supplementation.

19.  In the severe cases I will ask for an endocrine consult to consider Forteo and PTH if it is warranted.  This is quite rare but can be a huge help in complicated spine fractures in older patients.

20.  I advocate sun exposure for natural Vitamin D production in patients with low 06/3 ratios.  This is outlined in my Vitamin D blog.

FALL PREVENTION AND THE EXERCISE RX:

After the diet is re tooled to a paleolithic diet and the underlying leptin resistance is dealt with everything should be done to prevent falls that can cause fractures.  This is where exercise comes in.  I am a major advocate of lifting weights for both men and women no matter their baseline condition with this condition.  If the patient is wheelchair bound they can lift dumbbells while they watch TV and wear weighted ankle and wrist bracelets.  The reason is simple.  This will restore bone faster than any single thing we can offer once the dietary problem is repaired.  Men and women with osteoporosis need to take care not to fall down. Falls can break bones and are a major source of disability.  Once mobility is limited the death rate can begin to grow exponentially.  The goal is to restore natural mobility as soon as possible in this disease."

its all in the genes!

Well well well, I saw professor fogleman today. He is the leading specialist in Europe for Osteoporosis based at Guys Hospital in London Bridge. I have waited 3 months to see him in his clinic after my mother tracked down his details through references and a bit of research.

Fogleman has conducted many clinics and trials and has seen a broad number of people with this disease, of all ages. His appraoch and understanding seem pretty comprehensive and I have to say that having seen him now, I feel that it was definitely the right thing to push and find the time.

He reviewed my full history, breaks illnesses throughout my life, eating, drinking, smoking, you name it. THen he reviewed my scans and blood tests from September when I was in hospital.

The outcome -  its Genetic, and more surprisingly he thinks Ive had this ALL MY LIFE! Now theres a revelation! so after all the ummming and ahhing its a diagnosis. It is genetic -  thanks mum and dad -  its all your fault ;-) dud genes!
so what does this all mean. Its easier I think to list the points:
Ive always had low bone density issues.
I have broken lots of bones (yes we know!)
I have a good diet, never been anorexic or had other diseases that would bring this on.(chrones, hyperparathyroidism etc)
I am generally fit and slim and healthy - thanks but I reckon Im carrying a few extra pounds that need to GO, (but thats due to 21 breaks in 2 years and a complete lack of mobilitiy for the best part of 12 months!)
He cant understand why Ive ahd so many breaks in my ribs -  Im a total anomally and utterly unique -  in all the years hes been practising hes never seen anything like it
I can have children but just would need to be very closely monitored, have a good gyne, and possibly c section to avoid issues with pelvis.
(breastfeeding will increase my bone density issues and worsen them but they will recover in time once I stop)
I can lead a pretty normal life as I was before, but just a bit more caution in certain circimstances -  and yes that means I can still SKI!!! yipppeee. as long as I dont crash or get wiped out by some nutter snowboarder out of control! (so a relaxed and calm skiing trip then ! sounds like half days and plenty of apre to me!)
horse riding is not so recommended but a stroll about should be fine -  no cross country madness!
I can continue sport, healthy exercise and healthy eating with plenty of good stuff in my diet
continue taking vitamin d and the magnesium, k, c and calcium

so what is the but!!!!!?????

well yes there are drugs that would help but he conceeded that given my age and situation they are still too agressive would make me ill and affect other parts of my life -  so thats consistent with previous discussions, but he did say that the biphosphenates drug would help in the instance that I keep on breaking. that is a later discussion!

so a happy outcome after a traumatic year of inactivity, weight gain, massive pain and huge numbers of drugs, incapacitation, multiple breaks, a sore back, dislocated ribs and of course being off work for 5 months.

roll on 2012  -  its going to only get better from here.

xx

....like a seive!

.......and Im not just talking about my memory!

Another day another 20 accupunture needles! I feel like a pin cushion, or even, yes, you got it, a seive! Today the wangerama dealt with recent batch of sleepless nights, a fresh and snotty cold and sinus pain and finally a bunch more headaches -  the migraine variety! The number of those have increased since Ive got my hormones back, so more regular now on  the monthly cycle, but there are the random ones too!

Am back at work part time now, brain busy and feeling more positive, if somewhat tired. Body is getting a bit stronger on a daily basis though and my stamina is definitely improving. Only thing I seem to have noticed is that Ive normalised with my pain levels. It is constant in my ribs, and cold days I do notice it more, but Im pretty stuck on current level of pain killers, less and I cant do much, more and I do too much as cant actually feel any pain. I sort of need to be on the knife edge between pain and not , so that I can actually manage what level of activity is realistic and feasible.

Yes, Im starting too to fantasise about running again, doing some exercise, maybe even some pilates classes, as, with every day the ribs heal a tiny bit more, the stretch is less, the stamina is better and so life feels a tiny bit more normal. I read daily updates on Inspire about peoples' cases of OP and how they suffer and how they manage. I do weirdly seem to have a ridiculous record of breaks in a year.........21 seems to take the piss a bit in regards to others stories. 1 is bad, but 21 unreal......and thats my story. I feel the bubble ever more around me.......a sort of surreal and parallel universe.......where did this year go, how have the months slipped by, well I suppose the fog of killers and pain and spaciness from all the drugs is enough but it does all seem like it sort of happened to someone else. isnt it funny how the mind can trick the body. Im actually no better really than a few months ago. my spine readings are still horribly low (-3.2 T score -  thats pretty bad by the way as many with this disease have readings around -2.5! -4 is even worse and more rare!). My bone density is basically shocking still and the fact that you can squeeze me a few times and I break is pretty scary, however, the one HUGE difference for me now is that the pain of so many breaks is finally relieving itself. Assuming no more accidents, bear hugs or drunk colleagues fall on me then I should be alright. Im avoiding the rush hour traffic, got great at negtiating round pissed people, no bicycle action, horses, sports or wayward dancing! and all this alone is allowing me to feel a bit more 'normal' a bit more functional and like actually life might now beat me on this one.

A close friend recently compared me to a fine bone china......I like that comparison......a fine and somewhat fragile cup and saucer that is handled with love and care......and NOT left on the shelf just to look at but can still be used daily if you just handle with a little bit more thought and attention.......you dont bung it in the rucsack, picnic basket or jam it in the dishwasher......but there is no real reason not still to use it and enjoy the tea in! so a mental shift from humpty dumpty to fine china is I think a more positive and fitting approach.

Wangerama (Dr Wang my chinese doctor and accupuncturist) is funny. He told me I look young and vibrant today and he thinks Im very 'powerful'  -  his words not mine! he basically said that he thinks the fact that Im getting on with work, that Im still living life, that Im out there and not being a victim is the best thing possible. If you sit and moan and feel sorry for yourself instead of just getting on with it, not only is it all a bit depressing, and an ever decreasing downward spiral but its a negative state of mind that will never help -  (I know it all sounds a bit obvious, but its not always the easiest thing to do!). He told me the fact that Im back at work is massive as many of his clients with ME/ MS/ stroke victims, bone cancer and disease and even fertility issues, just give up and allow themselves the excuse of the illness/disease to sit about and feel sorry for themselves. His belief that positive mind = positive body and thus faster progress and recovery is the key. Its reassuring to hear this from him of course and I dont think Ive ever really allowed myself to be a victim. Yes I still have spectacularly bad days where its all a bit beyond the pale of actually getting my head round this thing, or dealing with the constant aches and pains, or the random shittyness that I can feel, either emotional or physical and vomitty. Ive just had to accept that this happens and this is just the way it is. No big deal its just part of how it is now........and when I do that it somehow doesnt feel so bad. I think I do have an occasional moan Im sure (apologies now if you are the one that gets it!), but Im also quite bored of sounding like I moan all the time in my own head, so Id rather just not comment and talk about the other persons stuff where possible! PLEASE JUST SHOOT ME OR TELL ME IF IM MOANING A LOT! apart from anything else, its just not a good state of mind for me to get better and through the day with. AND YES, when Im having a bad one, I turn on the cheesiest tune I can as loud as possible (when Im at home) and have a sodding good sing along......it works a treat! that or kicking a huge pile of leaves in the park is working too!

so my friends, life is rolling on and the tick of time continues in its consistent and unrelenting way of plodding forward..........but with it eases pain and boredom, and health and positivity return! Time heals......of course it does, but so it seems do a few needles and a bit of encouragement!

denial and a good cry!

Over the past few weeks I have been trying to really confront, research and learn what osteoporosis really is and what it actually means for me and my future. Frankly it all looks a little bleak, and its been something of a shock to really get under the hood of what it all means.

Ive joined a number of sites the best of which seems to be the inspire site that helps bring sufferers together to discuss and share and support each other. As well as people sharing their stories (more on that in a bit) it has diet, nutrition, drug and all sorts of personal and direct experience info on it that provides the greatest insight into what can and cant be done proactively and from research and side effects of many of the drugs.

Im not currently being treated with any of the known and recognised OP drugs as they are deemed too severe, nasty, aggressive, horrid side effects such as bone cancer and infertility -  all a bit bleak, and predominantly only for post menopausal women or much older people. So where does that leave me (and my fellow sufferes wiht this thing at such a 'young' age? Well Im taking 20000units a week of Vitamin d as we know. Thats it and a bunch of other supplements to try and help that absorb into my bones. Without the Vitamin D, K doesnt absorb, C doesnt absorb and neither does calcium, so they are all linked. I also referred to the fact that Im bruising a lot and it seems this is an outward sign of these deficiencies too!

The site though gives a lot of advice from people taking a number of of the drugs, their bone status, pain, conditions. To summararise a few of the cases and people on there:
28 yr old girl in SA who has -4 T scores, several broken hip issues, ops, and little support, medication etc. shes pretty incapacitated and also wants kids but being given no advice by her doctors on how viable this even is.
chap of 30 diagnosed with OP. lot of pain, again incapacitated. no treatment either
people in mobility scooters in their 30s and 40s (as well as much older) breaking bones hitting lumps in the street. people bending over in a chair and breaking bones, carrying heavy things and breaking, spines shortening and people loosing several cm and inches in height........33 yr old male with 2 breaks in his spine (readings are -3.6  -  mine are -3.2) requiring critical ops on his spine and not being elligable due to his condition.......!!!
These stories go on and on. Its pretty dire if Im honest. I only feel thankful that Im not dealing with all that, just a bunch of broken ribs and a lot of pain!
BUT - there are the success stories of course too. cases of very careful diet mangement, cuting out red meat, keeping diet more alkaline (acid erodes bone density) special cook books, and fitness balls that help increase bone density in the lowest impact way so as to avoid breaking. Some people are maintaining lifestyles, running and still playing some sport like tennis and even one lady still skiis, but that is after years of building back up her bone density. its a risk, but then I guess crossing the street is too.
I know of a lady who died on impact in a car accident recently. There is much debate about how much her osteoporosis contributed to her injuries, but the facts arent encouraging! its a shock to lose someone anyway, but knowing that a disease like this exacerbated the situation only makes it worse! my thoughts are wit the family.

So where am I? Well in all honesty i tip back and forth between super positive, fighty and strong, to an utter emotional wreck. Putting a brave face on and just getting on with things is sometimes just utterly exhausting, but its the only way I seem able to cope. But I also have days where I pretend that none of this is happening and have a day/ night off from being me. I drink and party and do too much and pretend that Im fine. Its a lifeline in small doses as it lets me feel normal, but the fall out the following day is huge. Physicall vomitting and sickness, cant get out of bed, shaking, sweats, pain and aching. Its all pretty grim. So you ask is it worth it? WEll at the moment I believe yes. To be able to go out and chat and be ' normal' and have fun and socialise like before is good for my sanity.(even if its not best for my body and my health!) It makes me feel better and strong and like I can get through it all. I need that. But I do also recognise that its a strong vein in me of utter denial and not really wanting to face up to it all. WIth knowledge comes power, but so also often comes pain, worry, understanding and of course denial!

I dont let this out very often, my modus operandi is to just get on with it all despite being tired or a bit overwhelmed, I dont want to go on about it all the time, I get bored talking about it. I get bored of being ill and being me. and I hear in my own head how shallow it can seem to others, that this is a disease that might not instantly kill me like cancer could, but it is a long running, debillitating disease and somehow because Im fine on the outside (right now), I cant really complain. Ive got plenty of good stuff to celebrate after all.

I have wonderful family and friends who are looking after me. I have a supportive job and company helping me get through this so I can find a way to keep working and be effective in my job and still be independent. I have a big bubbly personality and a glass half full approach to most things so that all keeps me going.

And then I have moments where I just explode and cry, usually I might add on my own in the privacy of my own home -  the cat looking on! People say crying is good. Its an important way of healing, of getting the stress out, of just deflating a bit. Its cathartic and therapeutic. I think in the past 4 or 5 months since I was diagnosed I have had a good cry only maybe 3 or 4 times. Something usually triggers me. A friend not being supportive and feeling dissapointed by it, or someone being truly kind and thoughtful and holding my hand, or even just watching some crap rom com on tv. it just comes out. But that is good I guess. Im not really a cryer I dont think, but maybe I should do more......maybe its also a form of acceptance I guess too. Another step in the process.

I mentioned the cat. Well he really does have a 6th sense and a remarkable capacity to just know when Im feeling bad. My baby bear is just there right beside me when Im wobbly or having a low day, or the pain is bad. Animals truely are healers. I cant think what life would be like with out my little bear. He is my shadow, and sticks like glue. Thank you Louie.

summit walk - Kilimanjaro 27/10/10

So, little sleep so far, and camping at 4600m, which left a good 1000 and more metres to climb between the hours of midnight and 8!

at 11pm we allgot out of our tents and got our stuff together. There was a general quiet amongst the group, only a couple of the chaps had climbed before so knew what to expect, the rest of us were both litterally and metaphorically in the dark about it! It was bitterly cold too, around -22 or so.

We had our light packs, head torches, walking poles, and 3 litres of water each, plus some snacks and a couple of extra layers to wear.
the first part of the ascent was steep up through boulders. ahead of us all we could see were all the other groups whod left ahead of us by their tiny headlamps on as a trail all the way up the side of the mountain that seems to just go on and on forever.
We walked in single file, stepping very sowly as we had been taught. All of us concentrating on the persons heals in front, no banter like all our previous walks, just the sound of foot on scree and rock, breathing, the odd cough. the first rest point we stopped and had a snack. so far so good. I did notice at this point a sense of being tired and having a sore back, but not enough to start worrying.
on we went to the next stop around another 400m further up. this was more open and a few of us went for  quick look break. we were making god ground, but it was clear that all of us were really in our own places trying to focus on the ascent. My back was in spasm at this point. I mentioned it to the guides and we discussed that I would continue. less than about 100m further up the mountain I ceased up. the cold was geting to me, I was knackered and I started to think that I might not actually make it. one of the other girls had also started having issues with her legs and dizziness and sickness. I saw her turn back. I was with one of the other chaps, going slow at the back and 2 guides. we carried on. My back was getting worse and worse, but my mind was saying 'you've come this far keeep going!!" it was at this point I sat down and took off my pack for the 3rd time that night and began to doubt!

I told Ian to carry on without me. I had to get my head together. My guide rubbed my back with the back of his hand and got my circulation going. Id stoped feeling my fingers and I was starting to get s distracted from pain that I wasnt sure I could put one foot in front of the other. But I did. we would go 20 m and Id sit, Id rest and then carry on. I had no painkillers and I was taking my glucose pills as much as possible and plenty of the water I had. the scree on this slope is also mind boggling at times, you can take a step and find yourself lower than where you started. its hard work, its pitch black, its silent and its sodding freezing (-25) I put all my layers on and kept going.

Id got to about 5650m when it all started to become too much, but what I realised with my guide was that the pain despite being horrendous in my back and being totall exhauseted, more than ever in my life before, yauwning every step, wanting to lie down and sleep no matter how cold I was, I understood somewhere in my mind that it wasnt getting worse.
they say that mind over matter is a remarkable thing. if you can find a way to deal with the pain you have you can push yourself in conditiions you never thought possible. Iver heard this of men in wars and losing limbs, but I never thought that my mind would be doing the same, but even in these circumstances somewhere I made a note that bad as it was, it wasnt geting worse. if I could just manage this out now, with regular stops and rests to ease the pain I might make it. that and my guide coaxing me up that mountain!!!!
it is really quite bizarre what you can discover about yourself in such situations and I think that this was my big lesson. that there comes a point where you can chose to give in or you can try and combat it. you know your limits, you know your markers, you have survived this long, maybe you can keep going........it is this that I learnt on that mountain. Times can be tough, it can hurt like hell, it is more miserable that you ever dreamed and you think there is no way to go on and yet somehow you do and can!

I got to the rim of the crater of the mountain, past some of the glaciers and collapsed. this was around dawn at about 6.45. Id watched the sun start to rise about 200m short of the crater rim where I knew the rest of the group would be enjoying ginger tea and snacks. plus they had the painkillers! After another collapse moment on the rim my guide got me up and on I trudged. as I ascended my group started to apear coming back down. they had summitted around 7.15.........I finally got there at 8am.

All I can express is relief at that point. Graham had come back with me and got me there. we had photos, so all credit to him he summitted twice and he held my hand in making it that last 20 min stretch. I was too tired to cry or laugh or really react. my back was starting to easy finally from the massive painkillers that hugh gave me on his way back down only half hour earlier. I had climber 7.5 hours without painkillers in the coldest night, in the dark in more pain that I can remember, but I did it. you can really discover how tough your body is at these times.

G and I then practically ran off the mountain. the altitude was getting to us, as was the sun. sunlight on a morning like this is remakable to, its the biggest relief you can feel after a night of what seemed like pure hell. the rest of the group were obviously ahead of us, but we got back for lunch. so far 15 hours walking! the way down is sheer joy through scree (like running down a huge sand-dune) surfing the stuff as you slide down. plus you get down sooooooo much faster! the further down you go the better your head and body feel!

after returning to camp late morning - we rested and I got some porters to help me off the mountain at this point. my legs had gone to jelly, my back was horrendous, despite pills, and I was so unbelievebly tired I could barely put one foot in front of the other. after a small amount of lunch and a rest, we continued. this is the fast descent. Myself, G and 2 porters and 2 guides get us off that mountain, all taking it in turns to keep me somewhat upright. rocks can spring out at you when you fel that disorientated.

Final camp is around 3000 just less meters. its warm, its back in the jungle and its pure bliss. I slept again for the first time in 5.5 days.

the final day walking of that mountain through jungle and seeing such beautiful flowers and trees and greenery also makes you appreciate the differences that a trip like this serves up. the contrast of hard harsh cold and brittle conditions up on the mountain and the lush greenery of the forrest. you can compare everything.

And so my summing up.
I learnt on that mountain that I can tolerate a lot of crap. the pain I went through was dire, but I made it to the top of that mountain all 5895m of it. I was proud of myself for getting there yes, and raising 2500 quid, but more than that, looking back now with what I face on a daily basis, a disease that has snuck up on me the way it has, makes me realise if I could combat that, then Im going to damn well try and combat this! Im a tough little cookie, I know that much about myself, and I know that I can keep pulling on my reserves even when I dont think I have any left! that is life. that is what I have learnt. I wont and I havent given up.......this is me......

.......and it seems that I climbed that mountain and already had osteoporosis and didnt even know it! a double whammy if I really think about it. It might explain my bones feeling sore and tired, but it might just be a massive positive that despite myself , even then I managed it! (dangerous as I now know it was.....and Im not just talking the mountain and the altitude!)

kilimanjaro - days 4-7

Days 4 – 7

We left the Shira Hut following another early morning rising. Up at 6, breakfasted and kitted up to leave around 7.30. We were always pretty slow at getting moving in the mornings, and much like the meercats standing to attention in the morning sun, we would often stand in the early rising sun as it started to warm us through from yet another bitter night. By this point it was reaching about -18 or -19 oC at night, so more and more layers were being put on at night to keep the chills out. With mats to sleep on, sock warmers for chilly toes, merino wool tops, and long johns it was a snazzy nightwear look, but quite essential. Oh and don’t forget the furry hat with ear flaps. Having to get out of your tent in the middle of the night is also something of a hassle when it involves putting on boots, grabbing the bogroll and taking a spin in the chilly moonlight with the frosty air in  your breath, and a puffa jacket on. Dropping your bottoms at such a time is not so desirable, but necessary.

The moon was high whilst we were trekking though, so we got a ful moon on about the 4^th night which was simply spectacular and made the clouds and the city below look quite surreal. Its hard to imagine seeing the curvature of the earth, but this was possible first at Shira Hut and we could also see the sun setting behind Mount Meru, which was almost as if the volcano was erupting in front of us. Utterly breathtaking.

It was a gentle ascent in the Great Barranco Valley, with massive panoramic views. The terrain was mostly lava ridges just south of the massive glaciers that slip down the sides of the volcano from the peak. It was pretty foggy at times, but we emerged up a step incline to the Lava tower junction at around 4550m. Having lunch here were some rather large crows and the local rodents, a sort of fat mouse, probably well fed due to all the summiteers’ and trekkers stopping of at this rocky outcrop. You then descend back down and back up the other side of the valley and over  the cliffs. There were some headstands and rather crazy poses done looking out over the clouds. From there we continued to our camp for that night. It was another 6 hour day in total, so arriving, we had tea, relaxed a little, sorted ourselves out, looked at our kit for the next day and then did a further 1 hour acclimatisation walk up and back down again. These were becoming increasingly puffy. Layers on and off as you rise higher, but start to work up a bit of heat due to the thinner air and having to work harder very subtly with each step. 

The following day our trek was straight up the cliffs opposite our camp. These looked monstrous in the morning light and as we saw the groups leaving ahead of us it was like watching trails of ants winding back and forth across what looked like a sheer rock face. This was to be the toughest ascent. It was the sheerest and most challenging, and if your a bit wobbly with heights and bouldering and leaping across the odd crevice like I am, it was frankly utterly terrifying, but the group pulled together and got us all up (despite a few giggles and jokes about certain grimaced looks and a few sweating heads from the terror!) as we went over the top of that ridge, more silly poses were pulled.

From there we continued back down a steep gorge and back up the other side of that to Karanga Hut (3930,) where we made camp again. It was Alfies birthday on this particular day, so chef managed to whip up a cake (albeight it did taste a bit garlicy from the pots he used!) and we all had a few games of cards and some more ginger tea to celebrate! Food was becoming a great source of interest as the days progressed. We had all got to a point where our bodily functions were being discussed openly, our toilet routines being source of much conversation. Beards and body hair was abundant, little or no washing (despite washy washy) meant we were starting to get a bit plumby, but I think when you al smell a bit like that you don’t really notice the others around you. We tried our best and wetwipe frankly are a saviour in such conditions! Hair was just tied back as it wasn’t much good any other way! All forms of real personal sanitisation was pretty low, the water was boiled for food and drinking -  the 5 litres we were  each drinking a day. I was using that in 2 bottles and a camelback, with obligatory berrocca (the water in a camelback tastes grim without it!) and diarolyte for salts and minerals to keep up with all the sweating.

We were eating pretty much everything in front of us, the food was amazing given where we were! Stews, soups, bread most days, eggs, rice dishes, high carb, long burn stuff! And we got fruit or some sort of pudding most nights too! There was no more water from this point so anything we needed was to be carried.

The night stay here was really cold, and in the morning there was a thicker layer of ice on the inside of the tent from our breathe. We were all pleased when the sun started to warm us once the mist had cleared. From here we could see the peak and 2 of the glaciers, but had to trek round the other side of the mountain to reach our last camp before summiting.

We reached our final camp at Barafu (4600m) around mid to late morning after trekking up a more scree landscape. Slightly harder to walk on, and then some step boulders to climb up through towards the camp. The tents were put up, and we had lunch. A few of us did a further acclimatisation walk, but more headaches were kicking in at this point so it was time for rest and chilling before the summit  night walk. We ate dinner at 6 and then prêt much tried to go to bed and sleep.

I might and that I hadn’t really slept at all in the past 4 days so was running pretty low on energy by this point, so resting was of utmost importance. A few of the group had nausea and headaches and were feeling tired or sleepless too, all par for the cause!

At this point the mountain is pretty unforgiving. The scenery is bleak and there was pretty much constant cloud and fog. It wasn’t a happy place with the overall sense of an overwhelming and slightly scarey ascent coming up.

Kilimanjaro - 1 year on

27.10.2010 -  8am. I Summited Kilimanjaro. 5895 m / 19341 ft above sea level.

After 7 days treking the Lemosho route in Tanzania, Kilimanjo peak came into view. 12 of us had gathered on the 19th October 2010 at Heathrow to fly out to Tanzania. Landing 8 or so hours later after a few small delays,  and then a half day rest and briefing we had spent a comfortable first night in the Arusha lodge hotel, a small oasis of calm overlooked by mount Meru, a sister mountain to Kili.

Days 1-3 (21 - 23 October)

Over the first few days we ascended the mountain taking in and treking through jungle, moon scapes, rocky outcrops, an area that seemed like the lost world, full of hanging creepers and strange shaped trees, monkeys and ghoulish sounds. A bit of rain didnt slow us down and generally we kept up quite a pace. The whole group were fit, kitted out and we had around 50 or so porters including 7 guides. Everything is carried up the mountain, the portapotty included! Breakfasts were porridge, jam, bread, and scrambled egg and bacon!!

The scenery was as you might expect with the base surrounds of a mountain in Africa. WE started by taking 4WD vehicles out to Londorossi  and thats where we began walking at around 2250m, so had a good 3000m to. The days were laid out with  a good easy going pace, but slower than you would expect as the whole point of the first, and longer route of the Lemosho is to gain acclimatisation more slowly, thus decreasing the risks of atlitude sickness, which can strike in any number of ways, but most commonly headaches, nausea, diarohhea, vomiting, and then only if its really bad do you get the more nasty pulmonary edoema........we discovered in fact whilst climbing that ginger tea is in fact one of the best things for all of these symptoms, and nearly everyone on the trip felt some effect of altitude at one point or another. The ginger tea was something we noticed all the porters and guides were drinking and found it also something of a relief. I personally failed to sleep over about 3000m and so found that a combingation of the ginger tea and a few tylenol were the only answer to actually getting a few winks each night. i did generally fail to sleep on the mountain, so that became one of my personal battles to cope with. After about a 3-4 hour walk the first day we camped at the Lemosho forest camp (2650m).

The group was excited and there was a lot of banter and messing about. it was only day one! After a decent night sleep and good breakfast we continued on at around 7 or so in the morning.

couming out of the jungly forest we started to ascend to Shira Plateau.The trail starts out in the lush rich montane forest before ascending into the moorland zone of giant heather. The trail climbs steadily

with views across the plains opening out as we reach the rim of the Shira Plateau. There is a tangible sense of wilderness especially if the afternoon mists come in. We camp in the centre of the plateau at “Shira One” (3550 m). Approx 6-7 hours walking in total and we started to notice that the air was getting a bit thinner (you can often ski up to this height) It was also a bit cooler and the 3 girls definitely started to apply the next layer of clothing. Another camp at shira one, at least the porters that tend to motor past you on the mountain despite carrying 3 or 4 times what we were, set up the tents in advance and even boil water for us to have a wash and clean our selves up. "Washy washy" every afternoon and evening before we sat down and had tea in the mess tent, ususally with popcorn and hot choc, coffee etc. After this we did an aclimitisation walk for another hour or so, up to 4000 m and back down. Its important to try and do these extra walks as it allows you to go higher but then camp lower at night. the rule is generally to sleep 500m below the highest point reached during the day.

We'd sort our kit for the next day, have a briefing and then sit and chat waiting for dinner to be brought. WIth only torches and the odd lantern, the aim was to do as much in daylight hours as possible. your body clock moved to day light hours pretty fast. rising early and going to bed by about 9! games of cards and sitting drinking ginger tea in the tent was popular, but we were turning into our tents relatively early so as to try and kip for the next days treking.

Day 3 was continuning on the Shira Plateau with an easy day to help acclimatisation and to explore the grassy

moorland and the volcanic rock formations of the plateau. We walked to the summit of Shira Cathedral, a huge buttress of rock surrounded by steep spires and pinnacles. There is a tangible sense of wilderness here (especially when the afternoon mists come in!) and the views from our camp near Shira Hut (3840m) of Mt. Meru floating on the clouds are simply unforgettable. 

latest status

So, another month or so on and where do I find myself this week? its about 4 or 5 weeks since I was in hospital and yet again Im not really at all clear where all that time has gone. Im timesliding.

After I left hospital my bro got me up to my parents place in Suffolk where I lounged in the garden in those 10 days of glorious indian summer that we got in September. Back to london for more appointments and tests and living quietly since. (see previous blogs for those updates)

Im still on whacker killers, but I decided that I was going to give myself a bit of a push and go back to work earlier than last time. Pain levels are still high, but I was getting to the point of just drifting from one day to the next in an endless stream of nothingness. Yes I sorted out some cupboards, paperwork, made a tray, did some filing, applied for a mortgage and had a daily wander in the lovely local parks and shops (not a great state of play for my current account  - I can say that is one major advantage of being at work, not to mention that there isnt a spare inch in my wardrobe now either, note to self......monitor major shopping habit!!) but all in all i didnt feel like I was really making progress. This is not really the case in reality. I was resting a lot, eating good diet and not drinking, and making small steps daily in what I could manage to do for myself, so as a girlfriend of mine said.......small achievements and goals to check off........like a gold star sheet when your 5! I must have a full sheet by now, maybe I'll put one up in the kitchen! an achievements chart!hmmm.

SO, I went back to work on Monday. HUGE tick. I was high as a kite. Loved seeing everyone, arranged my return to work schedule, spoke to doctors, made lots of decisions, status reports from my team and even met with my boss. It was a busy day and I barely stopped. I had to go back up on the painkillers to get through it all and by the time I flopped on the sofa around 7 in the evening, I knew I wouldnt be doing a lot for a while.

Tuesday and WEdnesday I barely left the house, did work calls, read some reports, emails, and generally caught up with work stuff, but I was utterly floored! my body was simply not responding to my mental instructions to carry out basic tasks. ITs rather like having ME I suspect. I was utterly knackered and body and brain simply not working together! and then also not sleeping just to add insult to injury!

Work again on Thursday, again productive and I have a list an arm long of todos! now I can get stressed about too much to do and how to fit it all into 2 days a week! but a good problem to have. Nice also to be needed, I was starting to feel that I might not be a necessary cog in the wheel! My team reassures me otherwise. thanks peeps! But I will say that Im tired. par for the course and like anyone whos had a holiday for a few weeks, those first days and week back at work are always a bit overwhelming and knackering even if you are fit, which of course Im not!

My fridge had got to a rather sorry state this week, so a rather emergency shop was done today on the way home slowly following a chat with a journo about this whole saga. She seems to think that its a good message and story to get out there, so I'll keep you posted on what happens there! Maybe I have a voice and a cause here and this is my time to charge like the lightbrigade in the cause for osteoporosis in younger people (there is so little research on this currently!)

A couple of other things have occured over the past few weeks too though. My phone deal with 02 is definitely working out more cost effective and I think I might finally be using some of those 1000 mins I get in my package. Im going all old fashioned again, Im actually calling girlfriends/ friends and chatting a lot, texting is suffering a harsh demise in some regards in my life,(that could also be because Ive developed lazy finger syndrome and cant be bothered to type!) and facetime is getting a great reception too. love it! although I do have  a slight panic about bad hairdays and smudgy lippy or eyeliner when Im actually "facing"!! I feel like one of those teenagers that had their own line in their room and used to constantly hog the phone (Im aware they still do this, but just on a pay as you go mobile phone now!)........and people also love actually chatting too......really! how and when did we all allow ourselves to get so impersonal and stop talking to each other?

Ive also been using the postal system a lot more, messages and cards to friends, little things to send in the post, its given me a lot of satisfaction, and be honest, we all love getting a letter or package in the post!
so Im also going to champion us all chatting and swapping addresses again, like we once did about 10 years ago in the heyday of the filofax and brick mobile phone! the funny thing is that getting a note or gift in the post can go a huge way to brightening someones day, and those little things have made such a huge difference in my rather bubbletastic world of late!

And lastly, I have discovered that covering myself in black charcoal and thinking that Im giving life drawing a go is a wonderful way to switch off! It remains to be seen that i can actually make anyone look like an actual human being through the medium of carbon on paper, but it was fun and messy and for 2 hours a week I was managing not to think of anything in reality in my life and just switch off to focus on naked body parts and whether the knee was in line with the nose and the right hand! Oh well, all quite good for a bit of positive thinking and well, any excuse.......

It has been a tough week too though. Ive done a lot of research this week on both depo and on osteoporosis and the more I read the more frightening it gets. Ive joined discussion forums for fellow sufferers and I cant begin to say how many people seem to feel as isolated by this illness, as I have. Doctors just dont have the info and the knowledge and no-one seems to know how to treat this condition in people under 50! the drugs and medication is so limited if not agressive in so many of us with horrid side effects. many are dealing with alternative solutions, diet and general support. But it is scary actually how many people are affected and not just getting the odd broken bone, these people are housebound, in constant pain, many have walkers or wheelchairs.......its a slow and silently progressive disease,  and Im finding its very hard to take that all in still. I dont know if Im still in some place of denial and not wanting to face up to all this, but equally I dont want this to beat me. I will keep researching and messaging and finding out all I can. I feel its a responsibility to myself as well as others. If Im honest I do find it a bit depressing, but the only way to deal with this is to confront it and just find out more. 

preventing osteoporosis - a stitch in time......

Over the past number of months whilst Ive bee largely incapacitated, Ive spent a lot of time wondering if I could have avoided this. The simple answer for me is probably a combination of yes and no. Ive always had a healthy diet, in fact grew up with a hippy vitamin, bran eating mother who fed us nuts and raisins and not sweets and crisps! so in general, that and the sporty outdoorsy lifestyle I have always lived, there isnt a whole lot I could have done to avoid this had I been more aware that this is NOT just an old persons disease. I did smoke for a few years, and did my fair share of partying hard at uni, and in the early years in London, but didnt everybody!? I wasnt any different to my friends, and certainly no alcoholic. I also never did drugs or pills or any of that stuff, just wasnt my scene, and can happily say that Ive NEVER done a line of coke, (I must be in the minority on that one!). so when you look at general lifestyle, diet and fitness, Im in good shape. HOWEVER, and this is where there is the BUT......you can never tell what your genetics are programmed to do. I had no idea Ive probably had a vitamin D deficiency for years, leading to lack of K and C and calcium being absorbed into my bones......I cant help wondering if all the bruises Ive always had have been some sort of indicator of this as they are certainly linked!? anyway, I digress. I chose to take a contraceptive that when looking at the paerwork in the packet, made no indication of this disease, only in women still maturing was there a warning (18 -  26 years old), so taking this at 32 was not deemed a risk.

I can say though that the more I research and read discussion posts by other sufferers of this disease, it does seem to be linked with a number of other conditions........coelic, chrones, gluten intollerances, hyperpararthyroidism, vit d deficiency, the list actually goes on and on.........diet is a big factor......cut out the dairy (its a myth that drinking a lot of milk actually helps significantly -  if you dont have the vit d, its actually bad for you it seems ) cut out gluten, eat only fresh fruit and veg, nothing prepackaged, dont drink, dont smoke, dont eat too much red meat..........etc. etc

I have copied a section here from one of my blog/ discussion sites for reference to anyone interested in keeing their bones fit and strong, so that you are preventing this at the very least in later years, or losing 5 inches in height, breaking bones just by brushing your hair or bending over, having hip operations, constant pain and tiredness, not being able to pick your kids up, worrying about falling, dropping out of various activities because you are terrified to break, stress and anxiety, fertility problems, incapacity, being in a wheelchair because you simply cant walk,  ......these are all very real issues on a daily basis for the large percentage of sufferers!!!!

"Because it is hard to replace bone that is lost, prevention is key. Beginning a lifelong commitment to exercise and healthy nutrition while you are still young reduces your risk of developing this condition later in life. Remember, you are never too young to think about preventing osteoporosis.

Exercise increases bone mass before menopause and helps to reduce bone loss after menopause. Bone strength increases with regular exercise -- to help prevent bone loss weight-bearing exercise such as walking, low-impact aerobics, or tennis work best.

An adequate calcium intake is essential in the prevention of osteoporosis. Good sources of calcium include dairy products, leafy green vegetables, nuts, and seafood. Most women get only about half of the calcium they need everyday so taking a calcium supplement is often advisable. The best form of calcium for preventing bone loss is calcium carbonate. If you choose to use calcium supplements, it's important that you understand that the body can only absorb up to 500 mg of calcium at one time, so you will need to divide your dose if the amount of calcium supplement you take exceeds that amount.

Vitamin D is necessary for the body to absorb calcium Milk that is fortified with vitamin D is one of the best sources. Sunlight also is an excellent source of vitamin D. In fact, being in the sun for just 15 minutes a day helps the body produce and activate vitamin D.

Calcium is important throughout a woman's life, although the amount necessary varies with age.

·         Children from ages 1 to 10 require 800 mg of calcium daily.

·         Teenagers need 1200 to 1500 mg of calcium per day.

·         Women between 25 and 50 need 1000 mg of daily calcium before menopause and 1500 mg after surgical or premature menopause.

·         Women over 50 require 1500 mg of calcium if they are not taking estrogen and 1000 mg if taking estrogen.

·         Pregnant or nursing women need an additional 400 mg of calcium daily.

Younger women who experience the symptoms of premenstrual syndrome (PMS) may be pleasantly surprised to find their symptoms are reduced by employing these osteoporosis prevention techniques. Studies show that calcium supplements may reduce or prevent up to 50% of all PMS symptoms, and exercise is often effective for reducing PMS symptoms.

Bruising is an indication of lack of vitamins D, K and C. These are all linked to uptake of calcium in the bones, so all are impacted when one is depleted!

so what can you do in your diet to affect all this?

There are foods that rob your bones of calcium, such as,
Foods to consider avoiding
 -1%, 2% and whole milk and products
 - Meats with 96% or less fat
 - Red meats (Increases calcium loss)
 - Hydrogenated oils such as stick margarine, and when listed as an ingredient in foods
 - Food with high butter fat and other animal fats
 - Hot dogs, hamburgers
 - Salt (a major bone robber) or foods prepared with salt
 - More than one cup of coffee or other caffeine beverages a day
 - Sugar (a major bone robber)
 - Chocolate
 - Soft drinks due to high phosphorus content
 - Alcohol (it inhibits calcium absorption)
 - Carbonated Beverages
 - Caffeine (increases rate of calcium loss through the urine)
 - Smoking

Also keep animal protein consumption down, it increases calcium loss.
Some foods to consider eating more often : (1-5 servings per week recommended) - Salmon and other fish, including the skin and fat (Research suggests this fat (EPA fat) has the ability to raise HDLs. (good cholestrol)
- Fresh fruits (good source of boron to aid in calcium absorption)
- Sesame seeds, Dried fruits, unsweetened, especially apricots, dates, prunes
- Low fat tomato sauces and pasta
- Peanuts, walnuts, almonds, peanut butter
- Grape juice, Grapes, especially red grapes, Grapefruit, especially pink, oranges, raisins
- Bean and, chickpea dishes and dips (great source of boron to help increase calcium absorption)
- Tomato salsas, Mineral water, Non fat yogurt, Skim Milk
- Sardines (Atlantic with bones), Pink Salmon (canned with bones or fresh), 
- Bok Choy, Turnip Greens, Brocoli, Non fat Baked Beans, Kidney Beans, Okra, Squash, Spinach, Carrots, lightly cooked, Pumpkin, canned or cooked, Sweet potatoes