MIRACLES can happen.....

..... so you will need to forgive me if I am a little emotional, but its been a HUGE day and I have to post and share something that is  a relief, a shock, a miracle and of huge importance!

I had my 6 month check up with Dr cox yesterday. As always is the case I quietly prepare myself, gather my questions for him and jump on the tube across to St Marys Mint wing to have my chat about bones et al!

I had the last appointment of the day and that seems an omen now in hindsight, as whilst somewhat boring waiting for the queue of old biddies to reduce in front of me, and his usual schedule invariably overrun, it can be a bit of a wait.......all adding to various thoughts that gather in ones mind.

I have generally been feeling ok more recently, I still have constant pain in my ribs and as mentioned in my last post it's due to fibromyalgia and latent bone pain, either from memory of pain, the cold weather and damp and also probably also a degree of ribs still healing (yes even after all this time) and calcium depositing......or a combination of all! Ive been doing a lot more and getting more bold at expanding my activities, most due to sheer bloody mindedness not to give in to something that I have been told repeatedly is limiting, and restricting in my usual life and activities. Over the past 2.5 years I have learnt to temper my enthusiastic leaping in to various things, eaten well, exercised as able, and generally kept my spirits in the positive cycle rather than some nasty blips of lows (which have been terrible lows)! I have been cautious, I have managed my condition, I have heeded lots of warnings and ignored other, particularly grim diagnoses, as you all know. Just being told wheelchairs and disability could have been part of my future was enough to put me in to a full on focus to find a way to turn that around! And oh boy, has it turned around !

I had my last scan back in May, the previous one in September last year and in between a few things have occurred. My SEVERE readings in my dreadfully osteoporotic spine (it looked like lace) have moved in to a safe zone of mildly osteopoenic - it looks like a normal spine again!!!!!. In laymens terms this means Im basically almost back to normal. My bones are weaker than average, but Im out of the danger zone and can live A NORMAL LIFE AGAIN! My readings have lept from a nasty -2.7 to an average of -1.7   -  an overall increase in bone density increase of 13 %!!!! this is nothing short of a miracle!
My hip bones are still a bit worse in the osteporosis zone (-2.2) and  whilst initially got a lot better, then have dropped back again, but given it is another 5 months on from that scan, its probable apparently that Im actually in osteopoenia now and not the danger zone, but its still a major area to focus and monitor..........but its trending the right way!

I have another condition, it has also been revealed, that my kidneys excrete about 50% more than most peoples do of calcium, so we are now looking at a way to reduce that with some new trials and tests using a diuretic that switches the calcium excretions for salt........that will also increase my ability to retain calcium and thus keep good bone density levels. In the meantime Im continuing to take 20,000 units monthly of vitamin D and daily does of calcium and D and a high mix level!  Im also being tested for some auto immune issues, which in the big scheme of things seem somewhat minor!

I can not begin to explain how a cloud that even up to yesterday that has been hanging over me has suddenly been lifted. I quite literally feel like Im standing on top of the world.......and funnily I was on top of a mountain called Kilimanjaro only November 2010!

It is really quite something to train your mind to cope and live daily with a disease and condition, face it off every day, and constantly check and monitor yourself with caution and an edge of fear. I have had so many differing reactions to what I have had  -  some have dismissed me, some have dropped me, some have held my hand, and others have been utterly unconditionally supportive and loving, no matter what! Like any condition, people struggle to know what to say, how to support, or just ignore or run away. I have had the most enormous insight in to what people deal and struggle with and the victimisation, weight and underlying worry not to mention the sheer lack of compassion that can be presented when you are 'weaker' or less strong than what is socially accepted as the norm. There is still so much judgementalism out there its scary. I have been blessed in so many ways to have had these insights and learn how to not only deal with my own challenges but also to comprehend and relate to others with conditions/ diseases or suffering. I can only hope that it makes me a better person.

I sat with my chin on the floor as Dr Cox sat there with a grin ear to ear on his face communicating the good news, the theory, the facts, the future! It cant be often he gets to give good news. I had someone close to me with me and we sat agape..........I later burst in to tears over a glass of bubbles from relief, shock and total wonderment.......how did this happen? Dr cox said he had never seen a case like this before. He could not fully explain it all, but he stated how utterly unique and rare it was.........well I always knew I was unique ;-) My firends are already making jokes about how I like to do things differently! yeah yeah.......I know, but who actually wants to be normal!? ;-)

This is how it can happen and this is the important part of my story to all women out there! Please NEVER EVER let your doctor persuade you to take a contraceptive called DEPO PROVERA. Whilst it has a 1 in 10 Million chance of doing to you what it did to me, I was not on the obvious risk list (it has a medical black box warning and yet doctors still prescribe it!). I have no osteporosis in the family. I am not susceptible to eating disorders. I got osteoporosis SEVERELY as a result of this nasty brutal contraceptive and it has sent me on a journey of incredible pain and utter nightmares over the past 2.5 years.
A vitamin D test should always be taken first if you are considering it, but the long and short of it is that this contraceptive ran my bones dry of calcium, it sapped me to such a fragile state that I broke 21 times and 3 from just a hug!! I became humpty dumpty.....but you know what  - the miracle is that Im together again! humpty had no such luck! The fact that I have fought this, I have kept as focused and positive as possible, and I found the most incredible endocrinologist to help me on this is also key. I could have given in to this and I would still likely be in a pretty fragile state, I know for sure that I would not be doing so well otherwise. just not taking the depo provera isnt the only solution.

I have had specialist personal training, I have eaten good food. I have cut acidic veg and food out. I have changed my mindset to one of healing and positivity, I have seen alternative medicine, acupuncture. I have rested. I have sat in the sun, I have taken huge doses of Vitamin D and calcium, and I have been careful. I have surrounded myself with positive and kind people. We are the average of the 5 closest to us, and its testament to them too!

Maybe I was unlucky to get this. Maybe there was a reason? all I know is this has been a crazy journey. I still have pain, I still have to take lots of stuff, and I still need to keep an eye on the hip bones in particular, but knowing that I am one of the lucky few that can now live my life at full throttle again, ski, horseride and get back my world and my life, I can only say that I feel incredibly blessed. I keep bursting in to tears with amazement and happiness and honest to god relief and shock. I want this to be a positive story, we can all overcome many things, we just need a bit of help, support and love and a positive mindset.

Thank you Dr Cox, thank you those of you, my family and close friends, and others for your supportive messages,  out there for all your support. thank you thank you thank you for sticking with me, for being in my life, for helping and holding my hand, I really couldnt have made this progress without you.

xxxxx

just a little accident prone I hear you say!?

Its happened again, I turned around and 9 months have swung by! does time speed up as we get older? or is it really just that the longer we spend on the planet things seem to shorten because we know what to expect now?

Well, life continues as always and I realised that I haven't really mentioned my progress recently, but a number of people have been asking, so here goes.

My regular rounds of tests and scans happen every 4-6 months and there are still huge questions unanswered as to how all this came about -  needless to say the depo provera contraceptive was a huge catalyst and women simply should never take it! I think we have all come to accept that there is no real obvious answer, which still has them all scratching their heads but I have in the meantime learnt how to manage things. My friends are great and mostly remember that when giving me a hug not to squeeze too hard, but otherwise for all intents and purposes Im managing. I continue to get the fibromyalgia (latent bone pain) but the hot weather this summer has been a dream and bliss as a result -  less pain on average. Damp days are grim and achey, so lots of hot drinks and baths! I wear layers when everyone else is seemingly half dressed around me, air con in offices is a total killer, and Raynauds seems to have kicked in in my fingers now, a common link to bone and joint issues, so Im looking good with my fingerless gloves! I barely take any pain killers now, just on occasion when things get a bit much, and I have definitely worked out to wait for the pain levels to reach their 'top' and then use mind over matter to actually manage them back down. The bone readings are continuing to climb in the right direction and every 0.1 increase is a small win for my bones, robustness and general wellbeing. It will never be back to normal and there is a very long way to go to get to 'safe' readings, but Im going in the right direction! the readings are at an average now of -2.8 (from -3.2) which is pretty good in 2 years! its a long way from +1 but thats life! its just over 2 years since I was diagnosed and its the right trend! daily calcium, magnesium and vitamin d keep it at bay! When I look how far I have come in 2 years, I have have to really stop and look at what I have achieved and see actually how much we can really do for ourselves. I chose to fight and not take the medical diagnosis as the end point!

I have had 2 more big accidents this year that have rocked me again, and have meant that Ive really had to look at how I listen to my body. My confidence and beliefs have been tested and I have really had to regroup, and just slow down (i didnt think I was going that fast to be honest!)

The first was an accident whilst on holiday for Christmas and new year. I had a very negative person with me at the time, and her negativity, aggression and anger massively affected me, to such an extent than rather than removing myself from her company and protecting myself, I ignored it, trying to be supportive to her and it resulted in a situation that should never have happened  - and torn ligaments, tendons, ruptured arteries and veins in my right ankle and leg. It was a total mess. But something amazing happened too. Being in Mexico I met a Shamen. He helped me understand why it happened and how I was allowing her negativity to invade my world and attract rubbish to me, because I wasnt letting it go or just wash over me. I was so affected by her behaviour that it had a major detrimental affect on me. It was a huge eyeopener and Ive tried to take that forward with me since. I had been allowing her to take her anger and frustrations out on me, she was bullying me and all of us around her, and instead of just saying to myself that it was her shit to deal with, I was letting it affect me too and bring me down. Result, was repatriation home following a rather miserable new years eve on a beach that I couldn't walk on (I was in a cast and on crutches!). But as is also always the case, with the bad also comes good, and I met 3 fantastic people who could not have been more wonderful and kind to me at the time, Sasha, Jason and Justin. I know I will keep these people as friends, they are kind, honest, genuine and like-minded! We were all on own own journeys out there and we all found ways to purge ourselves of some of our demons (or past stories that were lingering!!)

The ankle is STILL healing and has brought some annoyances about, but at no point has the pain ever been as bad as the ribs, and because of the ribs I knew that it was small fry in comparison to the more permanent condition that I manage daily. small things huh?

The second accident was purely that -  an accident and again involved this time the other ankle! this time though I did fracture a bone in my left foot and its still suffering 8 weeks down the line. But I got to work every day, I had ice packs on every night, I managed and pushed myself over another hurdle  -  again, this time it was an annoyance rather than a major drama, but it has had its impacts! In both cases when you cant walk properly and enduring pain, you tend to cease up, over compensate or try and protect the injured item. This has meant that my back has been a mess, headaches and migraine have increased and my ribs and bones have rebelled and given me quite a bit of grief, just to remind me, that whilst all might look ok on the outside, not to take for granted whats on the inside! But, and I say this as a strong BUT! I have just got on with it. Ive gone out when I can, Ive been to a few events and done a few things, even got to a wedding in Germany and I have to take my hat off to myself on occasion! it has been pretty exhausting at times, and Ive barely managed a smile when things have got a bit beyond the pale! but I have tried to just get on with it all. My Chinese Doctor Li has kept me going and without her massage and acupuncture it would have been a lot harder. she has been a godsend. It does put some things in to perspective when you are tired and at wits end from the constant nagging of pain. but there is always an end to it, and always someone out there to help support you and carry you and help!

I have been thankful for the handful of people that have been there fore me, my mum and dad 2 of the most special people in the world -  how they keep putting up with my dramas Ill never know! but I have to admit something really hard too! When the second fall happened I was on my own in my house (that is like fort knox) and I couldnt see how anyone could get in and get to me! no one had spare keys, the front door is 4x bolted and I couldnt move! I was totally alone and I had a moment of panic! I had to move, I had to help myself, there was no point crying and hoping someone would help -  they couldnt get in! (so now my friend has spare keys and my cleaner too!) it was an incredibly scarey and lonely moment! but I have made sure that cant happen again! we learn from everything!

So thats me for now........I have 2 new ventures running that are exciting and utterly terrifying at the same time, Im totally out of my comfort zone with both but being uncomfortable is good, it means we are testing ourselves and challenging what we know -  we are learning......its a good place to be!

A spoonful of sugar.....

......helps the medicine go down. Isnt that what we are all taught as children? If you ever saw the Mary Poppins film then you will know that it is an uptempo song sung by Mary Poppins, instructing the two children, Jane and Michael to clean their room. But even though the task is daunting, with a good attitude, it can still be fun. 

Im not sure that healing from a bunch of broken bones, any illness or trying to overcome some enormous feat of endurance even, is always that fun, but it is certainly a good way of trying to approach some indomitable or seemingly so feat or challenge......I certainly never liked to clean my room, but I guess the satisfaction of it all being tidy, even if I did just stuff everything in cupboards and under the bed, was something to take note of even if a bit short lived at times when invariably I then needed to find something and everything came pouring out on top of me! but of course that made me laugh too (most of the time!). Positivity of course always helps and finding a state of mind that allows you to switch into a mode that will support this when facing some horrible nasty,  is definitely better than the alternative of sitting, festering and being miserable. And look, Im not preaching! I did plenty of the latter stuff too!

I have been at both ends of this scale in the last year and its not surprising really that it takes both to be able to face head on, any challenge that is presented, misery and depression as well as positivity and an indomitable spirit -  dont let the 'b*****ds get you down (glass half full, optimism). In my case I hit the major low before making a conscious choice to turn things around an face my diagnosis head on. I can certainly say that once I did this earlier this year that things have started to transform, mentally and physically.

<<once you replace negative thoughts with positive ones you will start to see positive results.....>>

Furthermore, in a number of reports, optimists have been shown to live healthier lifestyles which may influence disease. Optimists are more physically active, consume more fruit, vegetables and whole-grain bread, and consume more moderate amounts of alcohol -  that has been my ongoing diet once the major healing phase was in progress.

"The relationship between optimism and health has also been studied with regards to physical symptoms, coping strategies and negative affect for those suffering from rheumatoid arthritis, asthma, and fibromyalgia.

It has been found that among individuals with these diseases, optimists are not more likely than pessimists to report pain alleviation due to coping strategies, despite differences in psychological well-being between the two groups." (G. Affleck, H Tennen, A. Apter. "Optimism, Pessimism, and Daily Life With Chronic Illness. Optimism & Pessimism: Implications for Theory, Research, and Practice. )

I looked up patience in wikipedia and its definition was  - Patience (or forbearing) is the state of endurance under difficult circumstances, which can mean persevering in the face of delay or provocation without acting on annoyance/anger in a negative way; or exhibiting forbearance when under strain, especially when faced with longer-term difficulties. Patience is the level of endurance one can take before negativity. It is also used to refer to the character trait of being steadfast. 

Why am I harping on about all this then? Ive tried meditation, massage, relaxation techniques, acupuncture, pain relief, sleeping, exercise, burying my head in the sand, denial, but in the end it was my state of mind that has had the biggest impact I truly believe. I have battled severe pain. Ive challenged the doctors, Ive done what I was told but also a lot of what I wasnt! Ive researched, Ive tried different techniques, Ive taken the supplements, Ive gone through an exercise rehab process, but fundamentally a few key things are really important.

1) keep people who make you laugh, look after you and dont sap your energy in your life.

2) eat well and live well (even if in pain) organise a few nice things to do and do them, dont wimp out because it hurts, or is tiring, or a battle to keep going and all you want to do is cry and give up -  it DOESNT WORK!

3) work hard  -  distraction works a treat

4) patience, more patience and a bit more!

5) self belief and PMA (positive mental attitude)

when life gives you a no its because there is a better yes down the road!

The long and short of all this is that last year about this time all the doctors were grim faced and whilst trying to be encouraging, they had no idea why I had developed such a dramatic form of osteoporosis? they all had their theories and the general consensus is still that it was the depo provera contraceptive I took which had the most radical and extreme reaction on me, in the rarest circumstances. so Im just bloody unlucky I guess. They couldnt explain the multiple breaks -  none had ever seen more that a couple in most people, my 21 were frankly a medical anomaly that noone could decifer. I saw osteoporosis specialists, rheumatologists, an orthopaedic surgeon and finally an endocrinologist. Months of blood tests, scans, ultrasound scans, urine tests, spinal xrays, morphine, painkillers etc etc you name it, and now a radioactive bone scan in 6 weeks time........all these did thankfully was rule other really nasty stuff out, but with no cure, no treatment other than vitamin d and some calcium, sick note off sports and the prospect that my spine might collapse if I ever had kids, with the threat of a wheelchair in the not so distant future, the future was definitely somewhat bleak. As Ive said tens of times before its more not knowing what and how to face the future rather than dealing with the diagnosis! so you can imagine....!

"sometimes the hardest person to face

 is the one staring back at you in the mirror!"

My appointment came around again with Dr Cox (cutey cox as I call him) last week, 7 months since I last saw him. Ive had ongoing pain all year, my ribs on my left hand side are still not healed, back pain, muscular pain and a form of fibromyalgia (latent bone pain), I could only think the worst. He left me to the end of his surgery so I was sitting there the best part of 2 hours waiting, winding myself up! but I know you are all on the edge of your seats waiting for the results!?

T and Z bone scores have increased from -2.8 to -2.3. (at diagnosis the L4 was at -3.2 and has increased to -2.7) = v severe OP 

 - just to remind you all someone fit and healthy of my age whos done a lot of sport all their life, eats healthily should be between about +1.5 and 2!!!

So this is something of a turn up for the books folks! this means that Very slowly im reversing. its a 4% average increase against my baseline, thus an increase in bone density! Suddenly the outlook is a lot less grim! Ive still got a long way to go, but thats what the patience is all about!

I can have kids  -  with a lot of support! last year they said it would be a risk not worth taking!

I will be able to ski again (my translation not theirs, but thats the positive thinking again, or optimism, or just plain pig headedness!) -  not for a while, but it may well be possible. (prob not the horseriding though, but never say never!) -  I might still get the body armor that I planned on though! I think its a sexy look! 

All of those other things that I was told I could never do again suddenly look like they might be possible at some point. not yet but baby steps!

He did also diagnose a stress fracture in my left foot! and Ive had a broken toe this year too! hence the need for a radioactive bone scan, to pick up on all the other fractures and why the ribs arent healing so well!

There are injections apparently of various supplements and stuff that top athletes have to speed bones knitting, but theyve never been tried in ribs -  maybe Ill be a new trial? He said that Im worth writing a white paper on! get that  -  lil ol me warranting a whole medical case study!

so Im going in the right direction. I have been self destructive, Ive been through anger, denial, depression, resignation and now the more positive taking control, positive and getting a grip! I happen to think anger and denial have served a pretty strong purpose for the good too. Ive pushed myself to forget and ignore my crappy stuff, and whilst the outcome of being bedridden after a big night out has often been the result (and not just due to some stinking hangover,( although those at least made me feel weirdly alive!) for a few brief moments Ive felt normal. the pain has been dulled and Ive ignored the reality......and it really hasnt harmed me. Im not condoning going out and going crazy but occasionally like any stressful job or crazy stuff that goes on in our lives you have to go out and let off steam! Its a form of purging that nasty negative stuff whirling around inside, which is only worse if you cant get rid!

The spoonful of sugar was taken, the bitter washed down with some sweet! Ive still got a few more spoons to take I know but it all helps.

Ive also added a couple of mantras......

stop saying I wish and start saying I will

its all in the art of the possible and not the impossible!

2 steps forward, 2 steps back - equilibrium?

My last posting was a rather impersonal summary of the 3 different types of pain. I posted it so as to raise more awareness to those who either suffer and will find it a way of clarifying or for those that need a better understanding of where Im at when I say Im in a constant state of pain. (ie persistent, as opposed to chronic or acute)

Its a concept for most that is hard to really grasp. I can also relate to that,  as I remember when my mother had constant back pain, when I  was a child, and I could never really fathom why she looked ok and yet insisted that she could barely stand or walk. That is the problem with pain -  its there, the person is suffering, but other than a grimace, or pale complexion, a few tears or so, there is no obvious outer sign of what is being endured.

Im now back in full swing of a more 'normal' life. I work everyday again, I try and see friends occasionally and have a bit of a social life now and then! I carry my own shopping, I even managed to do a bit of gardening last weekend, went for a walk, drive the car, take public transport etc. So all in all a pretty normal existence you might think.
The reality though is a bit more complex than all of that.
Yes, most mornings I stretch out in bed, greet the cat, and the first question that usually crosses my mind is what pain level today? Im normally around about a 1 or 2 first thing in the morning! A bumble and stumble with stiff limbs and sore joints into the bathroom and the baking hot shower usually serves to revive and warm me through to get me a bit more functional. I am challenged of course with the usual crisis that most women have every morning of course with what to wear and that provides something of a brief distraction, until I realise that due to lack of activity and eating a few too many naughty things, plus copious pills that have utterly disrupted my whole system, over the past year as way of comfort that I then despair that actually the dress I want to wear is now a bit tight! bleugh! That daily trauma over and Im generally in gear and out of the house quite soon.

I still have about 10 different pills every morning to take, magnesium citrate, calcuim, vit d, vit e, zinc and vit c combo, iron, my magic Chinese potion, co-enzyme q10 and Im off! should be too on that lot! but Im basically taking the magnesium, zinc and Iron cos Im knackered all the time. The magnesium is also meant to be good for bones and healing and bad sleep patterns. Co-enzyme is also good for immune and healing. vit e, hair and bones. You get the picture. And then there are the real drugs. Im still taking the naproxen anti inflamatory 1- 3 times a day. and then its a quick decision when I roll into the office as to whether its the 20mg codeine or the 30mg? I have a draw full of painkillers in the office or all types. If the tube journey has been bad of course Im on the 30mg. If Im having a better day its the 20. Naturally the lower the number the better in terms of side effects. I still get a nauseaous feeling with them and the higher dosages Im just a bit more fluffy headed! I still have to write nearly everything down all the time, but that's not such a bad practise in meetings and making decisions all the time anyway!

I have to say that I thought that by now Id be 'more stable'. Im pretty level with the pain and its just a way of life now mostly, but its also a bit catch 22. I will turn into a total slug if I dont do more exercise and activity, but its really quite painful to do so. when I do,  I cease up, I get stiff, I have higher pain levels all which I have to keep pushing through to try and combat having no core muscles (which hold me upright) and arms and legs now like jelly rather than the more toned appendages that got me up a mountain a while back. So slug I am at the moment. Im not sure how many slugs grew muscles, some might argue they are just one slimy muscle that slopes about, but whilst I dont think Im so similar to one (at least I hope Im not there yet), it seems that my body is going that way. My back hurts all the time, as do my ribs still  -  I guess they are STILL healing,  I feel a bit without a spine frankly as sitting up sometimes is really quite painful. The muscles I do have stretch and hurt like hell too -  probably from extreme underuse!  Its a form of fibromyalgia I believe -  constant aches in your muscles and bones -  another condition to add to my list!

......the last 2 months has been something of a roller coaster again starting with all those test in January, the ups and downs and further uncertainty being lobbed over the fence at me  -  constantly questioning, what , why, how come and is there something more that is driving all this.......tumours, spine fractures, or just crappy genetics!?

I went away to the sun to get more vitamin d and warmth in my bones. A nice alternative to the usual skiing trips at this time of year! I thought that the sun would help the pain, but it didnt. I had pain every day. It was devastating. Actually it knocked me back a lot. I had it in my head that living in the heat would really help. Maybe I just need to move to a hot country, but it didnt seem that way even after 2 weeks of hot sun in the Caribbean (I peeled 3 times -  thats how brown I was and how much sun I got, and dont go starting on about skin cancer now........I used factor 30!!). That and getting back to my work schedule (no stamina still so constantly knackered, but I am improving day by day) and of course the daily struggle with my body not doing what I want it to do.

Pain as I have said before is knackering! yes yes, I keep going on about it. I have had a bad couple of months though. I get back from the sun, and BAM into the next downward spiral. In kicks in a round of drinking myself bonkers on a Friday night after a long week (not so uncommon I know),  total denial and utter misery. "Wits end" some people call it. Depression setting back in, feeling pretty wretched generally. I bit the dust again! by the time I got to Easter I was holding down a job and getting through the day and then just functioning through the evening to start the next day. I dont really talk about this stuff to anyone, I put on my face in the morning and get on with it all. You have to dont you!? but it doesnt really help. Actually it gets worse and worse. The more you feel the less you tell and externalise it. You think people are bored, you think people are disinterested -  actually mostly they are, they only ask out of politeness and then you see their faces cloud over.......so this thing grows inside you and starts to eat away........the big black cloud decends and there really doesnt feel like much of the silver lining  that everyone promises and goes on about!

So home I took myself. The lab puppy is now a beast and bounced like tigger when I arrived. Isnt it wonderful the way animals live so utterly in the present? I found myself wanting to take a leaf out of his book........I had a long chat with mum, who with her medical background helped explain that its actually very common to go through this when you have been diagnosed with a lifetime illness or disease. You get angry, resentful, depressed, feel like its not worth it any more. Its tough finding a way to come to terms with a condition that constantly seems to hurl crap at you and make every day a challenge to get through, and all on the outside looks well. Oh the irony! I know that cancer sufferers often beat the cancer and then get massively depressed because the thing they were fighting is gone and they feel a bit empty and goaless. Im just finding a way to deal with crap that goes on day after day, no treatment, no reprieve from the onslaught, no cure!

But I do know that the only person who can get through this all is me! Its my shit to deal with, its the challenge that I have been handed by some fateful signal out there in the ether that has set me this goal. Get on with it, pick myself up and find a way to actually function day to day and find a way of living that doesnt feel so compromised all the time. I do feel compromised. My whole life feels  at times like it has dropped down through a plug hole...... All the sports and activities I love to do -  the stuff that makes me me, or so I thought! I found my riding boots and chaps under the bed last weekend, the ski boots, the sailing gear and the windsurfing kit. I cant use them but I refuse to throw them away! Am I mad or just hopeful that one day maybe there is the slimmest chance I can use them again. Or do I just defy the doctors!?mmmm

I do know that my job, and my interests in art and culture, travelling and music are all still there, it hasnt all gone, but I have to focus on those things to find a lift! So its time to rehabilitate.

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.........................................

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.

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