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