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

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