All About Me!Gender
Female
Age
29
Location
about me
My name is Christina and I have Camurati Engelmann's Disease (CED). I first developed pain in my lower legs at the age of 3, but I wasnt diagnosed with CED until I was 4 years old.
I am mainly affected in my lower legs, but during a bad flare-up my thighs and lower arms can also become very painful. There is no history of CED in my family as far as we can tell. I still live with my parents and my younger sister in a small rural village in the South Wales valleys. Its a beautiful place, surrounded by mountains and countryside. I have 2 sisters - Andrea (37) and Kathryn (19), and 1 brother - Martin (33). And although we are pretty varied in ages, we get along really well and always look out for each other. We also have a menagerie of pets which currently consists of 5 dogs, 4 Goldfish, 3 Ferrets and a Chicken! I cant possibly write everything there is to know about me in this little box, so if you want to know more then all you have to do is ask! Christina. xx
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Hello to anyone who actually reads this! lol
Fri, July 17, 2009 - 9:37 AM
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Well, its supposedly the height of the UK summer now.. which explains the torrential rain, gale-force wind and stupidly low temperatures! We did have a couple of really nice weeks in June where the weather was lovely and very hot (probably a little too hot for my liking, but I am not fussy.. Honest! lol) and during this time I noticed my pain returning with a vengeance after an oddly wonderful good-patch which had lasted for about 7 months! This has been by far the longest time that I have been out of pain in as long as I can remember! At first when the pains came back I thought it was linked to the heat and humidity of the weather, but even after the hot weather subsided the pain was still there and has gotten progressively worse over the past few weeks, up to the point where I had to see my GP for a review of my pain medication. I had only been taking Paracetamol and Ibuprofen for the pain and initially this had been working, but by last week it was doing nothing whatsoever as the pain had gotten so bad! I am now taking Diclofenac Sodium (Voltarol) along with Paracetamol and it seems to be doing the trick! Thankfully this is still a mild drug compared to the Tramadols and Codienes, etc, so hopefully the side-effects will be minimal! I cant tell you what a relief it is to finally be able to sleep again at night and to not be in agony before I even wake up in the morning! My main concerns at the moment are that the bones in my arms seem to be thickening more than they were.. its actually possible to feel the extra growth at my wrists and can be pretty uncomfortable. I am also noticing that I am getting headaches more frequently, but I believe that this again is linked to the CED affecting my skull rather than a flare-up in the Benign Intracranial Hypertension.. although I dont know which is the lesser evil and am awaiting a follow up appointment with my Rheumatologist and my Neurologist to get both checked out asap. One good thing that I have to report is that in June I was very fortunate that Vera, Kurt, Hannah and David chose to take their summer holiday in the UK and came to Wales for a week to meet me and spend some time with myself and my family. Hannah is now 13 and thankfully speaks much better english than I can speak german, and so we got to talk about lots of things! :o) Hannah is the first and only other CED sufferer that I have met in person so far, so it was a very big deal for both of us and our families!! I am happy that we got to spend some time with each other and had a chance to get to know each other in person, instead of just through emails. And I look forward to visiting them in Meran in the not too distant future! It makes me feel very happy and also very humble to know that there are others who understand completely what I go through on a daily basis with my pains, medication and limitations. But its inspiring to see that despite all our difficulties we are still able to laugh and enjoy life to the best of our abilities! :o) Until next time... Chris. xxx
Hey all,
Wed, April 23, 2008 - 6:25 AM
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I know I havent written anything on here for a while but to be honest not much has been happening in my world! My pain levels are more erratic this year than they have ever been and it is really hard to plan to do anything as I dont know how I am likely to feel from one moment to the next! Its really frustrating - even more so because its now mid-april and I still havent done anything remotely constructive yet this year!! Its like being in a state of limbo, just waiting for the day when I start to feel a little better and I can actually do something!! For a while I have been thinking about finding a job again.. probably only part-time, but I really want to do something to keep my mind active and it would be nice to feel useful again! The trouble is that my pains are so unpredicatable lately (even more so than usual) and I honestly dont know how to muster the strength, energy and enthusiasm to take the first step back out into the big wide world!! I have thought about doing some work from home and in theory that seems like a great idea as it would mean I could work as and when I felt like, but I have been stuck at home for so long now that it would be nice to be able to get out and have a change of scenery and see some different people... At the moment I feel like my CED is beating me and is turning me into something I dont want to be! I HATE sitting around doing nothing, especially when I have so many ideas and dreams that I want to put into practice, if only I had good enough health to let me try! Ahh, life is never simple!
Hey all, hope that you had a lovely xmas and new year?
Mon, January 7, 2008 - 6:02 AM
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Mine was pretty quiet as I havent been feeling so good.. not in much pain thankfully, just tired and run-down! Went to see the doctor this morning and she's going to check my blood levels for Underactive Thyroid - a condition that most of the women in my family suffer with! It doesnt bother me too much if I have it as it just means one extra tablet a day. The worst part is that IF thats is what I have then its likely that I will lose much of the weight that I have managed to gain over the past few months and I kinda like being "fat"! lol (9 stone as opposed to 7 stone.. its "fat" for me! lol). That aside I havent been too bad considering the weather has been bitterly cold (no snow as yet though!) and our heating is playing up - Typical! Grr! My bones havent been all that painful - for which I am very grateful - and I am managing well on Paracetamol (4 times a day), Ibuprofen (twice a day - was 3 times!) and Pregabalin 75mg (twice a day). I have also been able to reduce my Diamox to 125mg a day instead of 500mg and so far so good! Thats the diuretic I have to take to control the BIH (Benign Intracranial Hypertension). I have an appointment for a Visual Fields test on the 14th January and I see the Neurologist the following week for my check-up.. I'll let you know how that goes! :o) As you may be aware, Lauren and I have set up some alternatives to the Tribe group, as Lauren and a couple of others haven't been able to access their accounts on here for some reason. These groups can be found at... groups.google.com/group/Engelmanns health.groups.yahoo.com/group/..._Group/ Feel free to join up to these groups if you wish to! I also hope that these additional groups will help other people to find us all out here in cyber-space and therefore help to increase our numbers! :o) I think thats about all for now, but PLEASE get in touch with me and let me know how you are all doing?? :o) Your friend, and ever present pain in your butts! ;o) Christina. xxx
Hi everyone,
Tue, August 15, 2006 - 5:25 AM
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The reason for this post is because I havent heard from most of you in a quite a while and I want to keep the lines of communication open! The idea behind starting this tribe wasnt just to share our CED experiences, it was to build a network of "friends", as well as a group of people who know what its like to live with CED and the problems it poses ..cos God knows there arent many of us about! So, Please make an effort to keep in touch - even when its not Engelmann's related! It would be a huge shame for us to lose contact with each other, especially when you consider how long it took us to find each other to start with!! So get emailing!! Christina. xxx
Hi Patrick, Hope you're doing ok?
Fri, March 17, 2006 - 9:04 AM
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I have never used Prednisone, although it is a drug that my current specialist wants me to consider. I'm a bit wary with any drugs I have never taken, because of the problems I have had in the past with various meds. I have, however, been through the whole "withdrawal" thing - only last year infact! I was given a pain med called Tramadol which - at first - worked really well and kept the pain away for a considerable length of time. But, as usually happens, I became tolerant of the drug and it no longer gave me any relief whatsoever! So, under medical advice, I stopped taking the Tramadol and began taking Solpadol again (a drug that I had used in the past). Within 8 - 12 hours of the first "missed" dose, I began feeling very unwell, but couldn't quite describe it. I felt cold one minute and hot the next, I was sweating, had uncontrollable jerking of my right leg, headache, nausea, but also hungry - due to excess acid build up in my stomach ... in short, a really unpleasant feeling!! My mum called the emergency GP out to see me - as it was on the weekend, but he didnt know what to do as he didnt know my medical history, etc. He advised me to take my Tramadol anyway "to see if it would help the pain" (I forgot to mention that I was also in agony from the Engelmann's at this time!). So I took it and slept for 8 hours straight! When I went to see my GP on the monday morning, I asked if it could have been withdrawal symptoms and she said that Tramadol didnt have any addictive side-effects. She gave me different pain meds and advised me to stop the Tramadol again! And once again, about 10 hours after my first missed dose I had the shakes and shivers and felt really crappy! Apparently, Tramadol is a synthetic type of Morphine and is supposed to have less adverse effects, but it also share some of the same side-effects as Morphine - particulalry the dependancy problems, but its not listed as a typical Tramadol Side Effect! I, like yourself, had to continue taking the drugs and gradually - over the course of about 3 months - reduce them until I could stop them altogether. Its no fun taking medication of any kind, at any time - particularly when it isn't even helping to control the pain! But I got through it, and I know that you will too - you just gotta be really patient ...but you must have loads of patience to have sat and read all of this babble! lol I wish you all the best, until I next hear from you... Christina. xxx
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