Wednesday, 6 June 2012

getting motivated....its a bit of a battle!



My last update was all about how I was inspiring myself to get with the programme  - Rehabilitation Programme Sal -  RPS!) -  literally and get my body back, rather than trying to avoid the issue and pretend that its not really happening to me! And Im not just talking about whipping some of the lumpy bits into shape, although that is needed, its more about the fact that my body keeps doing a big fat fail on me and its getting rather annoying if Im honest! I am a bear with a sore head when the pain is bad and makes me want to lie down and just give up and sleep sometimes! I am this polar bear and my RPS is the penguin! I guess we all need a way of motivating ourselves dont we? a pair of symbols over my head might serve the purpose quite well it has to be said!

So yes, the swimming continues, but not managed quite the 2 a week that was intended. The massages have slipped due to various work pressures and frivolities concerning our Queen! and then the pilates centre ended up doing some special offer that utterly kiboshed my plans as they got swamped with people with vouchers and i couldnt actually book any sessions! so the last month has been a bit of a disaster. Im still doing a forest gump walkies style though so that has been keeping the butt moving! the outcome. BODY FAIL. pain levels back through the roof, painkillers back up to 30mg codeine. Im dammned then if i do and if I dont. It hurts if I do exercise and it kills if I dont. The first is definitely better than the second! and I have to do it if I want any kind of life and mobility in the coming years......

so I started some personal training sessions..........a specialist osteoporosis trainer who properly understands the bodies muscle systems, bones, the diet required, the stamina and most importantly has now started to instruct me on what I should and should not be doing exercise wise. so here is the depressing bit! None of the following:


  • running, jogging or boxing  -  basically anything with impact! -  all too high impact 
  • no sit ups or crunches
  • no rowing -  back strain on my spine!
  • no planks or side planks
  • certain stretches are out!
  • no work involving lying on my stomach, so superman stretches are out too! (pressure on those fragile little ribs again!)

......... the list goes on, and to think that all of that was standard only about 18 months ago when doing my Kilimanjaro training!

....in time my muscles will strengthen and my core will get better and then some of the above will be possible again, but its a bit of a set back again.

so I am doing:

  • arm weights -  but low as if I try and carry too much then I bugger my back again and too much spinal pressure -  its all about the reps and low weights again now!
  • lunges and squats, 
  • uphill fast walking!
  • powerplate stuff!
  • swimming and running in water! (it really does work)
  • pilates
  • Im gonna give golf a go too! (christ doesnt life change! I mean golf -  cummooonnnn!)


Ive committed to 10 sessions with the PT to get me going. if I dont literalyl have someone watching and counting me through I start wanting to cry -  I know its all a bit pathetic, but the ability to get positive sometimes is just too much, and thats when not being sure what is good and whats not, is a bit terrifying. Add to that that im constantly monitoring if something hurts or not and therefore trying to find the levels and the number of reps and pressure etc of each exercise progress it really is pretty slow. And having always been super active and sporty is very frustrating, but of course not insurmountable. Like all of us its a matter of persevering and keeping going, and each little step is a step towards progress. I have broken one of my middle toes over the weekend -  really not sure how, but Im still breaking it seems -  thankfully this is just one little pig on the end of my foot so not crazy painful like the ribs!

I know people out there have a lot worse to contend with I really do, and Im not trying to overegg my stuff - these are just my little battles one step at a time. I know from Kili we can always achieve way more than we think and its largely about not giving up and the power of the mind to push us through. Im drawing down on that again now. Im tired, Im a bit emotional and its all hurting quite a lot, but who knows where I will be in a couple of months time........


Wednesday, 9 May 2012

"Rehabilitation Programme Sal" (RPS)

Of late Ive had another of those troughs that I go on about, and so "Rehabilitation Programme Sal" (RPS) was started about 3 weeks ago. As I said in my last post, I have chosen  to take control of this quagmire ;-!

I joined the gym, and tentatively started a programme of movement that whilst a bit scary - I can still break pretty easily and am technically still healing, and as you know, still have all the pain to contend with -  its a catch 22 situation if I dont!

The more I 'rest' the more I become a slug. This means that my muscles support me less that creates a vicious circle of pain and frustration. I cant move due to pain that means that to exercise is more painful, Im damned if I do and if I dont! But I took the bit between the teeth and started a programme of movement! RPS as Im calling it!

So Ive been swimming a lot. 60 lengths each time I go. (its a shortish pool so not quite as impressive as it sounds) I swim pretty well so its about half an hour. More than that and the rib pain gets beyond a level that is copeable, but already after 7 sessions I can feel the difference in the spasm in my back and muscles in my intercostal ribs. My Chinese doc has even commented on how much better my back seems! I will get faster and just add more lengths in that half hour as I get stronger. My arm muscles are returning already and my legs feel flexed!

Im doing PT sessions also with a specialist in Osteoporosis, so once I ahve got a bit stronger generally we are starting a programme of weight bearing exercise, lunges etc that will strengthen and tone. Kat has focused on diseases like this as they are increasing and so many people have ligament, muscle and back injuries and the rehabilitation treatment is pretty similar to what I require!

I have also got a bunch of Pilates sessions booked in, the best and one recommendation that actually all my specialists agreed with. The reformer is thought to be a good lesser impact way of building muscle and strength and possibly at some point increasing a little of my desperately absent bone mass!

Im having 2 massages a week and an hour of acupuncture! its lovely so I feel pretty pampered, but its also really helping the general pain management -  I highly recommend it! i got a bulk package so the cost is pretty reasonable, even if whilst it feels a little extravagant, I also know that I simply could not work like I am at the moment and live a more normal existence without it! strange but true! and frankly I think its a pretty damn great excuse to justify having a back massage, head massage and reflexology combo every week! yeay!

I have also been hit by the bug going round -  a hacking chest infection for which Im now ringing out to the sound of 2 more drugs -  co-amoxiclav and doxycycline, so hopefully they will treat the chest and I can get on with the next level of my RPS! its a bit worrying that the scale of my cough right now could in fact crack a rib so Im being a little bit precious about it, but hey -  I really cant cope with more breaks right now, I want to keep the run of months with out a break in the black and not the red! Its been since September so im on a  new record!

Im also going to try and swap my wine habit for a vodka or spirits one. They are infinitely better on the hangover front and much less fattening, but that can wait until post antibiotics!




Friday, 4 May 2012

life is like........

....have you ever been stressed or upset and you find yourself doing something quite unexpected? Im talking about doing a Forrest Gump and running when you previously hated it, or baking cupcakes when you have never whipped up a batch in your life, or starting to doodle something having hated art at school, singing, dance, smoking, I dont know what, Im sure the list is endless.

Well, when I was getting divorced about 4  years ago I found myself having a Forrest moment.....running a LOT! It was therapeutic. When I got stressed about it all I'd throw on my trainers, hook up to the ipod and run. Now, Im no marathon runner, really, and I still have no ambition whatsoever to do one. This was just running wind, rain, sun and snow! and yes I got fit, slim and found that the natural endorphins were doing me the world of good!

A few years on, and another round of challenges, and Im running again. Well I say running, its more of a fast walk right now, given my bones and pain and all that stuff, but Im pounding the streets all the same. Im walking to and from work - 50 mins each way! Im hiking the streets again come rain or shine and its sort of strangely clearing the horrid fog in my head that has descended in the last year.  And yes -  in truth it is REALLY helping. Must be all those endorphins again! and the fact that Im actually able to walk and move this year in contrast to the complete disabled state of last!

You have to take control in order to stop feeling like the victim and as we all know we have a choice in everything, whether its sticking out a bad relationship, being nice/ nasty to someone, taking that job, quitting that job etc etc.......of course you cant control what others say or do to you, but you can control how you choose to react to them. That has been a tough one for me recently, having been ostracized by a bunch of friends on account of apparently being honest about how I felt about something that was in fact really upsetting me. I know we are English and therefore it is law that even if someone is rude, unkind or insensitive that apparently we absolutely come-what-may NEVER actually tell them how they are affecting us, we must keep that stiff up lip and simply zipit! I didnt do that and hence my issue -  I broke the law!

I was finding that I was increasingly upset and stressed, really upset and distraught. Increasingly  paranoid that in some way Im just some terrible person and Ive clearly done something awful to have been punished not only by a lifelong condition being thrown at me, but to then double up on finding people adding their own form of judgmental punishment on top  -  just to add cream to the pie! But as I said, it all comes down to how you choose to react to that, that and accepting that I had a  choice or not in the first place as to whether I tell the person how they were affecting me! I can (choose to) be the victim, and I was definitely feeling it. I can also decide that actually those that treat me like that are either so un-self aware, are very aware of what they are doing or simply not the friends I  thought they were, especially if tehy stop talking to me on account of that! (that last one is the toughest actually to deal with, and acknowledge -  especially when they are the people you spend the most time with and have shared private thoughts, time, holidays, weddings etc with) I can only hope that it isnt that last one! Really!

Anyway, I deviate, I was stressed and upset. My plug hole was sucking me down. I was circling rapidly towards an unspeakable place........just like when I was getting divorced and was starting my life again. I had left a home, all my belongings and had to start from scratch back then and I remember feeling the same sense of panic then as I have done of late. What will the future bring, can it get better, who, how, what would come along? And that was when I started running! My feet just carrying me along. This time its pacey walking! It clears my head, it lifts the fog, it raises me out of that navel gazing that we are all prone to doing when down in the dumps! The endorphins are going again and Im feeling more positive. There is no real change in the stuff that triggered this, but I can but hope that its a phase! Im choosing to get on with things, its the best I can do! actually its the only choice I want to make!

So I joined the gym -  Im swimming 3 x a week. Im walking and Im doing pilates! RPS has kicked in, the butt is being worked, the muscle memory is kicking back in! And Im pulling a Forrest Gump. so if you dont get an answer on my phone, Ill prob be out having a walk!

What was it that Forrest said?  "Life was like a box of chocolates ....You never know what you're gonna get......" In short -  you can always choose!

Tuesday, 24 April 2012

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.

Monday, 26 March 2012

WHAT is PAIN?

“Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage… Pain is always subjective. Each individual learns the application of the word through experience related to injury in early life...
It is unquestionably a sensation in a part or parts of the body, but it is also always unpleasant and therefore an emotional experience”. (International Association for the Study of Pain, 1979)

Importantly, this definition indicates that pain can occur without a recognised or obvious cause
and may also be influenced by our emotions.There are other ways of defining pain.




Acute pain
Acute pain is pain that lasts a short time and is clearly caused by tissue damage. This includes minor and major injuries, burns and surgery related pain. Acute pain usually improves within three months. If pain lasts longer
than three months it is considered to be persistent


Persistent pain
Persistent pain (also referred to as chronic pain) is pain that lasts longer than 3 months

It includes:
– pain that has an identifiable or obvious cause (an injury), and – pain that no longer has an identifiable cause
(i.e. the original injury has healed) Persistent pain with an obvious cause includes conditions like arthritis,
spinal stenosis, degenerative disc disease, or persistent leg ulcers. In persistent pain with no obvious cause, pain continues longer than you would expect (e.g. fibromyalgia, which is generalised muscle
soreness and stiffness). In these cases the nervous system misfires and continues to send pain signals even though there may be no damage.
Persistent pain can also be made worse by a lack of exercise that causes physical weakening.
Our thoughts and emotions can also affect how we respond to persistent pain.


When persistent pain becomes a problem

  1. Reduced activity, Unhelpful beliefs & thoughts, Repeated treatment failures
  2. Long term use of analgesic, sedative drugs, 
  3. Physical deterioration(e.g. muscle wasting, joint stiffness)
  4. Feelings of depression, helplessness, irritability 

Side effects
(e.g. stomach problems, lethargy, constipation)
Loss of job, financial difficulties, family stress,

Chronic Pain = Excessive Suffering
© MK Nicholas PhD, Pain Management & Research Centre, Royal North Shore Hospital


Because relieving persistent pain can be difficult, it can take time to get back to a fuller, more rewarding life. Managing persistent pain is about much more than just medicine. By being actively involved in a multidisciplinary approach to pain management, you can help your recovery and improve the quality of your life and how you live it, even though your pain persists.A multidisciplinary approach means you consult a number of healthcare professionals, including your GP and possibly a physiotherapist, pain specialist, social worker, nurse, occupational therapist and psychologist or counsellor to develop a range of strategies for you to use in managing your pain. It is important to follow your healthcare professional’s advice. Management
strategies are always individualised, because pain varies so much from person to person. Someone with arthritis may do well with occasional use of an over-the-counter pain reliever, whereas someone else with arthritis may need a prescription pain reliever and regular appropriate exercise to feel good.
When pain persists your role in managing it becomes really important. Remember, there are ways to take some control over your pain. A good way to start is to understand that what you think, feel and do on a
day-to-day basis will have an affect on your pain.

Accepting Pain
Most people who are successful pain managers have learned to accept their pain. This means accepting that although you may not have caused it in the first place, it is now your pain. Pain may bring about feelings of anger, sadness, frustration and grief, and that is normal. However, if these negative emotions go on for long periods, they tend to make pain worse  Whilst you and your healthcare team may be involved in exploring strategies which help you with your pain, at the end of the day it is you who experiences it. Successful pain managers say that they choose a team (for example partner, doctor, counsellor, other healthcare professional) which helps them decide on the strategies that work for them, and they develop a tool kit which they use to manage their pain and which allows them to participate fully in important everyday activities.  Some examples of various tools you might choose are discussed in this booklet. Many people report they are helped by using exercise strategies, special relaxation techniques, choosing enjoyable activities that they pace well, and organising their lives so that there is less stress and worry

Saturday, 28 January 2012

A bit of a 'curve' ball!

Happy New. Gosh well it seems a bit beyond that really now that we are at the end of January, but a new year it is and mean as you want to go on!
So, with the new year has come a whole new process, new hospital, more tests, ups and downs to go with it. I saw a new endocrinologist before Christmas -  Dr Cox. He's a totally different type of my doctor in my opinion. One that actually wants to know why and  how rather than just sticking at what! it seems something of a rarity these days to find a doctor who looks at the whole picture -  emotional, full history and even the smallest of things that may or may not have some sort of indicator towards what is really happening, and for anyone suffering from osteoporosis I strongly reccommend that you get your GP to refer you to one. They look fundamentally at the chemistry of your blood, how your body works and reacts to different things such as hormones and changes incurred in your body as a result of stress, changes in cortisol etc, immune issues and even imbalances in the various vitamins and minerals in the body. My specialist is one who focuses on osteoporosis, calcium and hormonal change. On my meeting him the week before christmas he set about scheduling me in for a raft more tests, 48 hour urine, 10 blood tests (what seemed like about 2 pints of blood to me!) and scans and spinal xrays. So the new year and a start back at work full time also yielded multiple visits to St Marys in Paddington, a vast and sprawling complex of buildings, corridors, rooms, machinery and hospital smells! on finally negotiating the maze that finding the Mint building was, I saw the wonderful endocrine nurses, Claire and Amu. Both experts it seems at taking blood, I managed not to pass out, go completely grey and wobbly and not go into panic attacks -  a long history of needle issues, multiple puncture marks in my arms hands and feet in the past, when blood has been drawn from veins, that seem to have some inate understanding of when a needle is coming within mm of them, and then disappearing into my arm deeper to hide from the trauma of that point! from there it was the scanners and xrays.
................and then the wait! until the 26th -  for the low down on what was really going on.
Now this all in and of itself does not sound so bad but that combined with the knowledge that they were testing my very specifically for something called Cushing syndrome/ disease, it was a bit of a shocker! Cushings is an awful condition that messes with the pituitary and or adrenal gland (the one just under the brain) that controls cortisol and other hormones. As one hormone goes mental its like dominoes and the rest go caput too, so this is just the start! when looking through the list of symtoms I seemed to have a rather alarming number of them! among which were severe bruising, sever headaches and migraine, hormonal changes, redness on the cheeks (face!), imune problems identified by multiple colds and viruses, weakness of joints and bones, multiple rib fractures, possible spinal fractures and tiredness. hmmmmmmm tick to all of those! yieks. the treatment for this disease is also really rather nasty so I really didnt want to start indulging in a mental hopscotch on this one, but Im afraid I really couldnt help it. The scenarios run through your head no matter what you try and do to disract yourself. Its a really rather nasty situation, and all I could do is wait for the results to come back. The urine needing to be cultured and tested about 10 different ways!

So I spent the best part of January in a further state of denial and avoidance like the proverbial ostritch! I managed about 15 days on the wagon and then fell off spectacularly by getting mashed on red wine! I put my head down at work, and got on with the job, had early nights, ate good food and tried to focus on the fact that whilst im still aching a great deal and have pain constantly, the level is more like 2 out of 10 rather than the previous 8 or so from september etc last year. Im still on painkillers! yes STILL! I tried to get off them again this week and managed 5 days without any, but by the end of that my back was in terrible spasm, I was struggling to sit up for long periods of time and worst of all I was in withdrawal again.......that addiction issue again. SO Im back on them and weaning off more slowly. It seems being so darstardly tired all the time is also a by-product of my withdrawals!

Right  -  back to the diagnosis. After a much expected sleepless night, which I might add is quite a change in my world of otherwise still needing at least 9 hours a night currently whilst I have no stamina at work, I met my mama at the hospital at 2.45 and up we went to the mint 3rd floor. A long day for the doctors, meant a 1.5 hr wait, and I was seen by the registrar and then Dr Cox himself.

NO cushings. Phew! major sigh of relief. BUT, and of course there is always a but isnt there, good news and bad, part of lifes balancing act! The but is that I have a rather nasty curve in my spine in the upper region across my spine between my shoulders. The part that not surprisingly I have suffered a great deal of back pain in for a number of years! And in osteoporosis terms this is not good news. It indicates, although it is not completely clear if or not, that the vertebrae, at least 2-3 of them have possibly had fractures and are compressing/collapsing (for want of a better term!) and therefore creating a curve or early hunch in my spine. Think old people and hunches and you get the picture. There is not much they can do to fix this, only physio, weight bearing exercises and some specific shoulder and back muscle exercises that will try and keep me upright at best! So, no real surprise now when all pain of past few years is considered! I wasnt just slouching and being lazy! (the picture above shows how the spine starts to hunch! theres a link in the title bar if you want more information on this!)
I should expect to continue having aches in my ribs whilst they heal and strengthen, they will of course take 4-5 times longer to heal, so Im coming up to about stage 3 now, so only another 4 months of healing then!
Im not allowed to take any other medication, only what Im already on for pain management. Im now on increased calcium doses and vit d for next 6 months. magnesium citrate and the other supplements. And now to the scarey bit. They both sugested that having children was really of very great risk currently. They didnt say never, just definitely not now! specifically due to the fact that due to the advanced osteporosis state in my spine (worse than they had thought) I would not be able to carry the weight of a baby on my spine. All the calcium would be sucked from my bones further and weaken me more excessively! its not so much risk on the pelvis at birth, although that could be problematic, but my spine really is a bit of a mess, and carrying a baby would produce many other complications possibly! So a rather nasty shock after the somewhat brighter diagnoses of the previous two specialists later on last year, I seem to have gone full circle on that on. These doctors are focusing on getting my calcium levels back up again and to try and build me up so that possibly in the future I might still consider this. Its really a bit of a shock to think that this might be the blight that actually prevents me from bearing children, but Im focusing on being positive and that in time I can achieve this and with the right support I can have kids. They are also concluding that the depoprovera really has had a rather drastic and negative impact on my body. rare but possible on this contraceptive, so again I repeat please dont take it!

Im booked in for further tests, had more bloods for the red marking on my cheek and got 6 months of being terribly careful and managing pain ahead of me. Its not all doom and gloom at least. Im back at work, loving it, Ive got a close group of friends, Lei, Paul, soph and claudia in particular supporting me and a few special others (afar) keeping track and dropping me a note of word of much appreciated support. thank you. Really, you have no idea what it means. I know its boring dealing with people in pain or ill. I try not to moan!

So, more sun, more vitamins, a bit more sport and exercise is now possible, lots of red wine of course, and after a nice quiet January Im looking forward to Feb and the rest of the year hotting up. Its been a mild winter thankfully, the cold is a total bugger for my fractures and ribs, perhaps Ill move somewhere hot!!! ;-)

I really wish everyone good health and happiness in 2012, seems 2011 was pretty dismal for many!

xxx

Wednesday, 28 December 2011

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.

Friday, 23 December 2011

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

Wednesday, 14 December 2011

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."


Tuesday, 13 December 2011

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