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