Candice Curtis & Crohns Disease: Sorry i've been away

Monday, 24 December 2007

Sorry i've been away

Hi everyone. Sorry I've been away for 8 months. I unfortunately had to completely rest and by this I mean no TV, no work of any kind and I had to stop thinking, all thinking! I will tell you all of my ups and downs, trails and trivializations of this healing time that I have taken. So here goes.... When I left you all on the cliff hanger of what was 'so great', I had just been to see a natural doctor. Physically - (over the first few weeks of seeing the doctor) I had been pouring with blood when i went to the loo (for a about a month) and I was going to the loo about 40 times per day/ night. I had lost so much weight I even thought I was really skinny! and my skin was grey, I already looked like I was dead! The doctor did in fact say I was almost dead, a few more days and I wouldn't be writing this now. Luckily for me I managed to see the doctor just in time and it wasn't for me not knowing about him, that it took this path. I (to my detriment and benefit) am a very stubborn person and although I had had this doctor's telephone number for about 1 year prior to contacting him, I had to reach a 'place' where I was ready to see him. Things in life are strange and wonderful and it takes nearly dying twice to be awakened. I (if you remember my Crohns history) took myself off my medication about 6 years ago. I did this because I wanted to know what I was like without the medication. I had been feeling well for a while and I wanted to know if I could come off the drugs. The drugs where killing my bone marrow and had various other side effects. So, I weened my self off them over 6 months - 1 year (without the doctors permission as they said I could NEVER come off them) and I survived well enough until this collapse. I class it as a collapse now rather than the flair up that i mentioned at the beginning of the blog. As I have now lived through the experience and I am writing it with hindsight and a greater knowledge. For the last few years I had unknowingly pushed the limits of reality to extremes. I was living at such a speed that to think of it now is truly boggling. I had about 20 different internal dialogs going on in my head at any moment. I was always multi multi tasking, planning, organizing and working. I was working physically and mentally all day and night. I rarely slept. When I was too ill to ride and do physical things I would hang off my bed working on the laptop, designing websites, writing this blog! etc... All I knew was I wasn't going to let it beat me and I had this inner need to prove to myself and the world that it wouldn't beat me and the need for recognition that I'm doing well and it's not winning. I truly thought that if I didn't stop it wouldn't win..... How ignorant I was!

No comments:

From diagnosis to now.

This needs to be updated as it was written at the time the blog was started....
My crohns diagnosis - 14 years ago I suffered over 1.5 years with increasing stomach cramps far worse than the worst of a normal person, then the 2nd 6 months, I spent most days and nights in pure agony and was sick all the time. Gradually I was being sick 20 times a night with the last 10 - 15 times being just bile. The weirdest thing was that when I was being sick i didn't have any pain! So I almost looked forward to being sick just to alleviate the pain! During this time (and for a good few years afterwards) I was taking a huge amount of strong painkillers, I was living on them. The next 6 months preceded with less sickness but with pain that was much more server than the initial year. During this time (1.5 yrs) I saw my family GP and a few others and they all said you have irritable bowl syndrome and take some peppermint oil or other similar stupid comments. No-one doing any tests, most not even touching my stomach to investigate! Finally after I had been screaming in bed for 2 weeks my dad called the doctor to come out, however they refused and told me to come in, again to my GP. He sent me to see a specialist as he thought it was my appendix - that it was going to burst (This comment had been a bit of a floater in comments from doctors that it could be my appendix at various times but the pain would be moving or doing something uncharacteristic to appendicitis). He decided I would need an operation immediately and the surgeon saw me. He said to me that it wasn't the appendix, that it was something else and it had to be operated on immediately. They removed lots of my intestine's both large and small as they were swollen to the size of very large oranges. After the op' they told me I had Crohns Disease and that there was no known cause of it, it is not infectious and that it is not curable! They said that the symptoms shouldn't return for at least 2 years as no other patient has had it return in that period if they have had an op'. They also said that if I didn't have the op' I would have been dead in 2 days! So I was saved and given a life of no hope. This was when I was diagnosed, they missed all the for ground work and made me get to the point of having to 'need' an operation and then they tell me there is no hope and I'm to lead a life of pain and suffering! Nice eh! I mean morphine didn't even really help me with the pain when I was in the hospital after the op', recovering. This op' happened when I was 18, luckily in one sense for me I've always had a gift to look healthy, no one could see that i was dying then and in the years that followed. So, back to the story..... unfortunately for me my symptoms came back after only 2 months, with vengeance! Hardly enough time to even recover let alone start fighting again. So they stuck me on strong steroids (prednisone, azathiropine, Budesinide to name but not correctly spell, but a few!). Over the next few years I was given more and more drugs that were killing off other parts of my body - my bone marrow for one. I was so skinny and worse... frail, I felt that if some one where to hit my arm it would snap. Not a nice feeling since i've always been a strong little cookie! Anyway over the years things did slowly get worse although at the time there where intervals that made me feel as if things were in remission for a while. I got to a point about 6/7 years ago when I felt I wanted to know how I would be without these killer drugs that I "could never come off." (I had been told that some of these drugs where for life and that I could never come off them) So I tried without, I took a year to ween myself off the various drugs and I tried from then on without any drugs. It was the same time that my grandfather noticed that most pain killers say 'not for crohns patients' within their paper work. So I stopped all drugs and I survived ok, although I was in fact still walking down the path to my inevitable demise. During the time of the op' I had already started experimenting with drugs, the occasional spliff etc.. At some point during the time of still taking the painkillers I noticed that the spliff had more effect than any amount of painkiller. So from that moment in time I continued to use spliffs more and more to help control the pain I was in every minute of every day. Over the years that followed I wasn't conscious about the amount of pain I was in as I'd been living with it and fighting and trying to move forwards with it for so long that it was a part of me. However my life had moved up in speed over the years, racing as best as I could against time. I had suffered for the first 3 years after the op' with the fear and worry and depression that I was living on borrowed time and at any moment it might get snapped away from me. As a young girl this was tough but as usual I accepted things and carried on the best I could. Thinking that this wouldn't have been given to me and I wouldn't have been saved if I couldn't cope. So cope I did. The April flair up wasn't really a.... flair up like I mentioned at the time. It was the end of the road. From the end of 2006 I had started to slow down as I felt the end was near. However my slowing down was only stopping the physical aspect of my life - riding and the such (basically over the last 12 years I have been made to stop riding, through the pain becoming too immense, many times and for long periods as well.) The speed at which I was living at, thinking at and functioning at was, looking back at it, like a super hero speed! So I (in case you hadn't realized I'm not a hypochondriac and I will never let it be known how much i'm suffering - it's just the way i am.) Anyway so I went on holiday jan 07, to try to get a little bit more time on my side - e.g resting on holiday is supposed to refresh you and I hoped it would give me more time as I could feel that it was running out. So by the time I realized that I wasn't going to be able to cure this episode by just resting. I decided to start the blog as I thought if I can get out of this one then it's worth documenting. However I only got to write those few days in april and then I had to stop. Doctors orders! The rest of this year has been been very intense. By the time I actually went to see the doc' (I'd had his number for over a year and had not gone to see him - When I took myself off my drugs I wanted to know what life would be like without them but I had great intentions to try out natural therapies, Chinese, herbs etc.... however this never happened as I was 'coping'. So I had to get to a point where I was 'laughing in the face of death' (by this I mean that I was still in such high spirits and I could feel death was knocking at my door but I was still able to laugh and say " finally i'm at a place where I now can heal myself" and I was finally ready to seek out help, ready both mentally and physically.) As I said this year has been very intense, I can truly say there are a hell of a lot more pain thresholds than i knew existed and to be able to 'feel' your body healing itself, taking you back through the damage in reverse is truly enlightening and painful! It is only now through the healing process that I have understood where i've been, on the road to and from death. In comparison to many other crohns suffers over the years I have always had a more server version - typical, can't do things by half's miss extremist!

However where i'm at at the moment - the doctor cured the energy blockage that was caused by the initial trauma that caused crohns which means the cause of the crohns is gone and now all i have to do is allow the body to heal. This happened a few months ago and I'm doing well, i'm still not well but i will be soon, i'm about 85 - 90% there but this last bit is holding on to make sure than I come back into life, after this healing and maintain the slower paced life and all the things I have learnt. Otherwise i probably would try to over do it again as thats all I've known since i was diagnosed with crohns and before - upbringing. So there has been and still is a lot of re programming of my brain, my way of life has had to completely change and sometimes i still resort back to the old me which i have to notice and then change before i get a reaction from my body! It's all very interesting, how intelligent our bodies are. I will be filling in the experiences of my healing from April to now, within the blog postings over the next few months, as I'm still resting.