Wednesday, 10 December 2008

Christmas is coming...!!!

I am finally over a nasty chest infection that had me wheezing through the night. I sounded like a kettle boiling! I could probably have wheezed a few Christmas carols in tune!! I don't like doubling my dose of hydrocortisone as it puts me into a false sense of well being and also I gain weight...or so I thought. Having got on the scales this week I have lost nearly 2 pounds which is great. I have nearly broken the 19 stone mark. I cant wait to see 18 on the scales again. I am at the heaviest I have been in my entire life and I don't want to be this weight. Since leaving work in August I have lost 11 pounds which isn't too bad considering I have been juggling my medication and have had adjustments to what I take. I didn't think I could lose any weight but I have tried my hardest to eat as sensibly as possible. I just need to concentrate on the exercise part which is hard for me as I get exhausted easily but I am so determined, more than ever, to get rid of those pounds and inches. I need to do this not only for my own health but for my state of mind. I need to boost my confidence and self-esteem and prove to myself that the fight is not over. 2008, for me has been about change and trying to figure out where my life is going. 2009 will be about new beginnings and goals. I am looking at trying to get back into employment by March so that we can boost our income and start looking at saving for the future as well as improving our house. An extra wage would put us in a good position and give us the freedom to enjoy life a little. However, I need to be in a good place to be able to feel I can hold a job down. I am getting there but I need to get myself a little fitter and starting the growth hormone therapy in January, I hope, will also help me.

We're heading up to Scotland soon and I cannot wait. I have never been there before and we are staying in a cottage overlooking a loch. I am so looking forward to the break and relaxation with my family. I wasn't feeling the Christmas spirit but its starting to come and now I am getting excited. Harry is learning his lines for his Christmas play. He is playing a Christmas Card...!! Its the first time he has had lines in a play and I am so proud of him. He has overcome his speech problems and is growing so much in confidence. I just love him to pieces. This new life we have here has certainly changed us all for the better, I am so happy to say. We have had our fair share of bad luck in the past few years but I have come to learn as I grow older that sometimes luck is what we make of it. I have always tried to be positive, trying to get myself through some of the worst times with a smile, for my own sanity and for that of my family as sometimes I feel like the bedrock, the glue holding everyone's spirits together. I don;t know what change has happened within me in the last few weeks but I feel very empowered and alive and the urge to want to change things for the better in our lives is very overpowering.

Thursday, 27 November 2008

A positive outlook...

In the years that I have been on this journey I have had so many up and downs, akin to a rollercoaster ride. Normally when I think I am settled I reach the pinnacle of the ride and whoosh right back down to the bottom again, flying by the seat of my pants, heart in my mouth and not really knowing if I am coming or going. This journey has been a difficult one for me and I guess it has defined my life for the past seven years. I am not me anymore - I am this disease. I am a Cushings patient and then I am Diane. Its a scarey thought. Its coming to the end of 2008 soon. Each year I proclaim the next year will be better. Each year I am sure things will change, be different and give me more hope. Each year I look back at this time and think, it hasn't changed much, has it.

Reflecting on 2008, the rollercoaster ride has been in full swing. I started the year deciding this was going to be the year I finally say I am going ahead with a bi-lateral adrenalectomy. Be rid of Cushings forever. Start a new path...yeah, right. I decided to do some travelling, just short trips but catch up on all the years that I couldn't have holidays due to ill health and finances. I travelled to Athens at the beginning of the year. I had a job working at a Publishers on BBC educational books and was invited to attend their annual sales conference. It was fantastic to visit Greece as I had never been before. Later in April I flew to Dublin in Ireland with my husband Steve as a late birthday present for him. We stayed in a converted castle hotel which was fabulous, very opulent and we had a great time. I flew to Spain in August and had a break with my Mum and my seven year old son and just kicked back and relax. I am off to Scotland at the end of the year and am so looking forward to it. I just wanted to do some things that I had put on the back burner in lieu of a BLA. However the BLA isn't to be...not at this point of time anyway.

I am going through another recurrance of Cushings. I was diagnosed back in April 2004 with Cushings Disease. In September of that year I had my first transphenoidal surgery to remove a macroadenoma on my pituitary gland. They managed to debulk some of it and I was declared cured by my surgeon. In Autum 2005 I suffered my first reccurance and a second surgery was performed in February 2006. I had just started a nursing course and was about to embark on a career in Nursing. I wanted so desperately to be an endocrine nurse. However this dream was short lived and I suffered another recurrance shortly after, my tumour had started to grow again and I had a course of fractionated radiotherapy in November/December 2006. This recurrance was diagnosed in October 2007. In March/April of the same year I suffered an episode of pituitary appoplexy. I lost 80% vision in my left eye. I had sporadic involuntary muscle spasms. My tumour had expanded and bled into itself. In short it had haemorrhaged. During this time for me life didn't stop, I continued to work...madness really looking back.

My recurrance is being managed by medication. I rattle when I walk. At 36yrs of age, I rely on medication to live. That is one aspect that saddens me the most. Right now a BLA is not an option for me and I have very few options left now. I have been advised that it would be a great risk to remove my adrenals. I would have a high chance of Nelsons Syndrome. My pituitary tumour could regrow. It has been unpredictable and at times gone against my medical teams findings and predictions. Whenever they say to me, it would be rare for you to get this or that, I just laugh now as it normally means, you'll get it. I seem to be unluckky in that respect and manage to get the rarest of conditions. I must be special...LOL!!

So, in brief that is the ride I have been on. There is so much more to share in this blog but I will save that for another day...