And It's About Time There Was Some Support For Cushing's!
The story so far:
Well, it appears that my symptoms are getting worse and worse, I feel so exhausted and can barely walk up a flight of stairs. I have to take one step at a time and have breaks in between. I am only 31yrs old but I feel like I am 60 years old. It is getting so tough that I have decided that enough is enough. I went to my GP and he has signed me off of work. I tried to carry on with work but can’t do it anymore, it is difficult to use the computer, stare at a screen for too long. My hands can barely type fast and my memory is fading. Doing dictation is a nightmare.
I finally gave in and volunteered to go into hospital. Harry is being cared for by the family. It has been so hard, we are in debt up to our eyeballs, Harry has lost his place at nursery because we cannot afford to keep him there and my health is getting worse. I sometimes feel like I am on my way out and it is scary. I am contemplating writing letters to my loved ones in case I don’t make it. The weight is just piling on and I can’t do anything about it, I am so sad. When I look in the mirror I see a stranger staring back. I want to be ‘me’ again. I am too young to be going through this and I fear that I won’t see Harry growing up. I spent 2 weeks in hospital getting my blood sugars under control and my blood pressure. It was difficult at first because I was put in a ware with lots of old people but I grew to respect them and I tried to help them in any way I can. I met a lovely lady called Irene who used to sit in her chair for hours on end doing nothing, I really felt for her, she was lovely. I was put on insulin to control my diabetes which kind of freaked me out. I got used to injecting myself over time though and the finger pricking was a doddle! My op was scheduled for July 19th but because of my high bp and bs they decided to cancel it.
Back in hospital again, this time I have been vomiting non-stop. I can’t hold any food down and my GP admitted me straight away because of my diabetes. I was put on a sliding scale and it was discovered my potassium was very low. I had ecg’s and was put on a heart monitor – it scared me when a doctor said I could die of a heart attack. I was back in the same ward again after being put in two other wards temporarily. I had an infection in my big toe as my ingrowing toenail was back so my op was cancelled yet again whilst they arranged for an emergency op to remove the toenail. My neuro said if he had opened me up infection could have got in my blood stream. I was so lucky! I was on the lovely sandoket and anti-sickness pills as well as bp pills, water tablets. I counted at one time I was on at least 30 pills a day – it was madness. I was glad they decided to keep me in hospital this time until my op. It was scheduled for 21st September. I was secretly terrified and wrote the letters to my loved ones. My neuro surgeon was lovely and I met him the day before the op. He said I would look like foo man choo as I would be bruised. Apparently my nostril was too small so they would have to go through my lip to operate.
On the day of my op I had my husband and my Mum with me. They were more scared then me. I grew more confident and positive as the day wore on. They both cried before I went into theatre, but I stayed strong. Lots of the nurses that I had made friends with came in and said hello before I went in. All I can remember is going under and then somebody asking me who the prime minister was! All I kept thinking was, why are they asking me this, so I said Tony Blair, although that’s debatable!! When they took me back to the ward, I was vomiting blood and nearly splatter painted the ward! I made some fantastic friends on the ward who made my stay bearable. Lots of people thought I had been in a car crash as my face was battered and swollen and bruised. I cried the first time I looked in the mirror, I looked horrific. But my little boy didn’t get scared or batter an eyelid when he first came to visit me. It made me cry.
So here I am now half a year on. I am started to feel ‘normal’ again and am looking forward to the day when I can say goodbye to the insulin and the steroids. Whether that day will come, I don’t know as my endo said I could be on it for the rest of my life…but I am optimistic. Its been a long 6 months and I have been on and off ill, sickness, tiredness, headaches, CT scans, MRIs, syncathen tests. At the least all of the tumour has been removed. I am just looking forward to the day I can say I am well again.
This disease has taken so much from me. It has destroyed my self-esteem, my dignity, and my pride in myself. It has broken me financially. It has nearly destroyed my marriage and it has nearly taken away my home. I never thought I could bounce back but I am. The one thing this disease has given me is the strength and determination to not let it beat me. Through this disease I have made many very special friends mostly though this web site. They have been there to support me and give me fantastic advice. They have been there to hold my ‘virtual’ hand and to give me big cyber hugs. Without them I would not have got through this and I want to say thank you to each and every one of you who has posted and given me hope. I hope to be around here for a while yet and I really hope I can help others in the process.
