I had my 6 month check up with Dr cox yesterday. As always is the case I quietly prepare myself, gather my questions for him and jump on the tube across to St Marys Mint wing to have my chat about bones et al!
I had the last appointment of the day and that seems an omen now in hindsight, as whilst somewhat boring waiting for the queue of old biddies to reduce in front of me, and his usual schedule invariably overrun, it can be a bit of a wait.......all adding to various thoughts that gather in ones mind.
I have generally been feeling ok more recently, I still have constant pain in my ribs and as mentioned in my last post it's due to fibromyalgia and latent bone pain, either from memory of pain, the cold weather and damp and also probably also a degree of ribs still healing (yes even after all this time) and calcium depositing......or a combination of all! Ive been doing a lot more and getting more bold at expanding my activities, most due to sheer bloody mindedness not to give in to something that I have been told repeatedly is limiting, and restricting in my usual life and activities. Over the past 2.5 years I have learnt to temper my enthusiastic leaping in to various things, eaten well, exercised as able, and generally kept my spirits in the positive cycle rather than some nasty blips of lows (which have been terrible lows)! I have been cautious, I have managed my condition, I have heeded lots of warnings and ignored other, particularly grim diagnoses, as you all know. Just being told wheelchairs and disability could have been part of my future was enough to put me in to a full on focus to find a way to turn that around! And oh boy, has it turned around !
I had my last scan back in May, the previous one in September last year and in between a few things have occurred. My SEVERE readings in my dreadfully osteoporotic spine (it looked like lace) have moved in to a safe zone of mildly osteopoenic - it looks like a normal spine again!!!!!. In laymens terms this means Im basically almost back to normal. My bones are weaker than average, but Im out of the danger zone and can live A NORMAL LIFE AGAIN! My readings have lept from a nasty -2.7 to an average of -1.7 - an overall increase in bone density increase of 13 %!!!! this is nothing short of a miracle!
My hip bones are still a bit worse in the osteporosis zone (-2.2) and whilst initially got a lot better, then have dropped back again, but given it is another 5 months on from that scan, its probable apparently that Im actually in osteopoenia now and not the danger zone, but its still a major area to focus and monitor..........but its trending the right way!
I have another condition, it has also been revealed, that my kidneys excrete about 50% more than most peoples do of calcium, so we are now looking at a way to reduce that with some new trials and tests using a diuretic that switches the calcium excretions for salt........that will also increase my ability to retain calcium and thus keep good bone density levels. In the meantime Im continuing to take 20,000 units monthly of vitamin D and daily does of calcium and D and a high mix level! Im also being tested for some auto immune issues, which in the big scheme of things seem somewhat minor!
I can not begin to explain how a cloud that even up to yesterday that has been hanging over me has suddenly been lifted. I quite literally feel like Im standing on top of the world.......and funnily I was on top of a mountain called Kilimanjaro only November 2010!
It is really quite something to train your mind to cope and live daily with a disease and condition, face it off every day, and constantly check and monitor yourself with caution and an edge of fear. I have had so many differing reactions to what I have had - some have dismissed me, some have dropped me, some have held my hand, and others have been utterly unconditionally supportive and loving, no matter what! Like any condition, people struggle to know what to say, how to support, or just ignore or run away. I have had the most enormous insight in to what people deal and struggle with and the victimisation, weight and underlying worry not to mention the sheer lack of compassion that can be presented when you are 'weaker' or less strong than what is socially accepted as the norm. There is still so much judgementalism out there its scary. I have been blessed in so many ways to have had these insights and learn how to not only deal with my own challenges but also to comprehend and relate to others with conditions/ diseases or suffering. I can only hope that it makes me a better person.
I sat with my chin on the floor as Dr Cox sat there with a grin ear to ear on his face communicating the good news, the theory, the facts, the future! It cant be often he gets to give good news. I had someone close to me with me and we sat agape..........I later burst in to tears over a glass of bubbles from relief, shock and total wonderment.......how did this happen? Dr cox said he had never seen a case like this before. He could not fully explain it all, but he stated how utterly unique and rare it was.........well I always knew I was unique ;-) My firends are already making jokes about how I like to do things differently! yeah yeah.......I know, but who actually wants to be normal!? ;-)
This is how it can happen and this is the important part of my story to all women out there! Please NEVER EVER let your doctor persuade you to take a contraceptive called DEPO PROVERA. Whilst it has a 1 in 10 Million chance of doing to you what it did to me, I was not on the obvious risk list (it has a medical black box warning and yet doctors still prescribe it!). I have no osteporosis in the family. I am not susceptible to eating disorders. I got osteoporosis SEVERELY as a result of this nasty brutal contraceptive and it has sent me on a journey of incredible pain and utter nightmares over the past 2.5 years.
A vitamin D test should always be taken first if you are considering it, but the long and short of it is that this contraceptive ran my bones dry of calcium, it sapped me to such a fragile state that I broke 21 times and 3 from just a hug!! I became humpty dumpty.....but you know what - the miracle is that Im together again! humpty had no such luck! The fact that I have fought this, I have kept as focused and positive as possible, and I found the most incredible endocrinologist to help me on this is also key. I could have given in to this and I would still likely be in a pretty fragile state, I know for sure that I would not be doing so well otherwise. just not taking the depo provera isnt the only solution.
I have had specialist personal training, I have eaten good food. I have cut acidic veg and food out. I have changed my mindset to one of healing and positivity, I have seen alternative medicine, acupuncture. I have rested. I have sat in the sun, I have taken huge doses of Vitamin D and calcium, and I have been careful. I have surrounded myself with positive and kind people. We are the average of the 5 closest to us, and its testament to them too!
Maybe I was unlucky to get this. Maybe there was a reason? all I know is this has been a crazy journey. I still have pain, I still have to take lots of stuff, and I still need to keep an eye on the hip bones in particular, but knowing that I am one of the lucky few that can now live my life at full throttle again, ski, horseride and get back my world and my life, I can only say that I feel incredibly blessed. I keep bursting in to tears with amazement and happiness and honest to god relief and shock. I want this to be a positive story, we can all overcome many things, we just need a bit of help, support and love and a positive mindset.
Thank you Dr Cox, thank you those of you, my family and close friends, and others for your supportive messages, out there for all your support. thank you thank you thank you for sticking with me, for being in my life, for helping and holding my hand, I really couldnt have made this progress without you.
xxxxx
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