Showing posts with label osteoporsis. Show all posts
Showing posts with label osteoporsis. Show all posts

Monday, 13 August 2012

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!


Friday, 4 November 2011

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.