Lots to write about today. I went to Kember and Jones which is normally my very favourite place to eat. I ordered a salad with tuna, aubergine, rocket and harissa dressing. It arrived. My face fell and my rage rose. 2 ounces of tuna, four slices of aubergine, less than a handful of rocket and about a teaspoon of harissa. I was furious. £8.10 for the most tragically small salad I think I have ever seen in my life. I complained yet still had to pay full price and nothing was done to abate my fury. I wrote a snippy email and got a reply saying to come back to the shop for a refund. No way I was going back cap in hand for an £8 refund. Shocking.
My lunch is my main meal of the day. I take great pains when I prepare it and I make it substantial, healthy and tasty and I don't know why restaurants think they can get away with anything less. It's time to open the cafe bar I keep threatening to open. I could cook circles rounds these amateurs and I could also still make a healthy profit on something that looked better, tasted better than the tea plate I was served today. And breathe......rant over.
On a more positive note, I got to sleep until 9.30am and have a shower and get ready at a luxurious pace. I actually got the time to apply my lipstick and eye make-up in the comfort of my own home, rather than trying to slap it on between pot holes on the bus. I had to go see the endocrinologist at 2pm this afternoon, hence the trip into Glasgow.
Lovely visit to my endo today. I have been seeing him for the last six years and he knows me, my body and the darkest corners of my mind. I had some bloods taken today. It has been so long since I have had bloods done that I could not even remember which one was my good arm. There was a time that I could tell them which veins were best and was getting bloods taken more than once a day.
I was diagnosed with Cushings Disease 6 years ago but the tumour had been there since I had hit puberty and had been ruling my life and my metabolism for more years than I wass even aware it was present. I had always had a battle with my weight but I did not know why it was so difficult for me to lose it and to keep it off.
Cushing's syndrome occurs when the body's tissues are exposed to excessive levels of cortisol for long periods of time. Normally, the production of cortisol follows a precise chain of events. First, the hypothalamus, a part of the brain which is about the size of a small sugar cube, sends corticotropin releasing hormone (CRH) to the pituitary gland. CRH causes the pituitary to secrete ACTH (adrenocorticotropin), a hormone that stimulates the adrenal glands. When the adrenals, which are located just above the kidneys, receive the ACTH, they respond by releasing cortisol into the bloodstream.
Cortisol performs vital tasks in the body. It helps maintain blood pressure and cardiovascular function, reduces the immune system's inflammatory response, balances the effects of insulin in breaking down sugar for energy, and regulates the metabolism of proteins, carbohydrates, and fats.
Pituitary adenomas cause most cases of Cushing's syndrome and this is called Cushing's Disease. This is what I had, affectionately known as Tommy the Tumour. The symptoms, and this is just some of them, can be seen next to the lady. I looked like this, if not worse, and resembled a lemon on a stick. When you have Cushing' your body is constantly in fight/flight mode. You also don't metabolise anymore. Your body stores fat as it think it's in a situation of extreme stress all the time and stores it in the places it can store it the most quickly. So you end up with this morphed body that just keeps getting fatter and fatter no matter what you do or what you eat. I learned quickly that if I stuck to a high protein diet I gained a lot less and managed to gain a lot less weight than other people that I know who have had the same illness.
I don't know when I started to get sick. I think the first indication I had that something was wrong was when in 2002 but I had obviously been ill for a long time, given how long the tumour had been there. I always had weird infections and outbreaks of impetigo and rashes. I always had problems with sleeping; too much or too little. Never just right!
In the summer of 2002 at University, I suffered from a strange virus and then lost all my hair. This was actually a bit hilarious - it was shedding and I could pull clump after clump of it out. My good friend informed me that he was getting cling film for the top of his pint. I laughed it off, got a wig, which I had a panic attack wearing so invested in lots of scarves and had fun with it.
Then the terrible headaches started and I increasingly felt stressed and anxious all the time. My weight was also spiralling out of control. I had a sore head all the time and I slept about four hours a night. Having been terribly depressed and sleepy at university the first time, I equated not sleeping with being functional and did not think anything was wrong. I felt exhausted but at the same time wired. I had also managed to shift the first weight I put on but people I knew well said it was almost as if I was a different shape as well as being thinner. I just didn't look or feel right at all.
I was constantly hysterical and felt like my body, my existence was on fast forward. It took every once of self control to keep the weight off and I was eating less than 1000 calories a day. I was highly strung, obsessional and hyperactive. I was totally exhausted. I also felt like I could read people's minds and picked up on every emotion, negative or positive and it was really starting to affect me. This was caused my adrenal glands being totally exhausted from making enough cortisol to run an army.
"Intuition is an interesting quality of early life adrenal fatigue. People that develop adrenal fatigue early in life are often described as empaths and will tell their friends (but not their doctor) about their ability to pick up feelings. They often suffer because of their high sensitivity and are always looking for new ways to ‘ground’ themselves." - I felt as if I could read people's minds and could see their emotions so vividly is was like they had their own colour.
At Christmas 2003, I had a headache so bad I lost consciousness. I went to Ireland for a job and then had to have a medical. I had one of those terrible headaches from which I lost consciousness, I had such a sore head and face in the aftermath it was quite unbelievable. I was diagnosed with trigeminal neuralgia and given anti-epiletic medicine to control it. I was also given pain killers that would have knocked out a horse. I was worried taking them and didn't think I was being treated with the right medication so I just stopped it.
I got a new job in Italy and moved out there in July 2004. My skin got really bad - thin and acne ridden. My hair was coarse and starting to thin. I now slept even less and I was spiralling out of control. I had panic attacks and would sweat all the time. I started to get a downy hair all over my body and I bruised on touch. I was petrified. I became incredibly aggressive and angry.
To cut a long story short; I went pyscho. At the time, my periods had completely stopped, I was losing my hair, I was not sleeping more than two hours. I felt suicidal. I had a sore head. My skin was covered in boils and scabs. My acne was horrific and had a body beard. This was now the autumn of 2004.
I was now tearing through life. I was insane. I was having panic attacks all the time. I was obsessive compulsive and out of control. I had started to gain weight no matter what i did or did not eat and it was all going to my stomach and face. I had also developed a hump. I kept falling over and losing my balance.
I did not recognise the face staring back at me in the mirror. I started to have hot flashes and it felt as if there were insects crawling under my skin. This was the menopause. I now slept about 2 hours a night and felt like I losing my mind.
Christmas of 2004 came home and went to the doctor’s with a list of symptoms who assured me it was all due to the move to Italy. I said it might be an idea to do a blood test anyway as the hair alone was definitely a hormonal issue. So we did some tests and they showed I had high prolactin. I started to read about tumours related to the pituitary gland and when I found a website about Cushings on this website I knew straight away that this is what was wrong with me. It was such a relief. I fought with the doctor for a while (actually a bloody long time and he was pretty nasty about it) and then he eventually referred me to an endocrinologist. However, there was a 24 week wait. I wrote some nasty letters and that got changed to 2 weeks!
I was getting sicker and came home and they screened my adrenal glands. There was nothing there. I had further testing and an MRI in May showed a pituitary tumour. It was about 9mm and was secreting ACTH and prolactin. I was referred for surgery. My health got steadily worse. I developed early stages of osteoporosis and was unable to walk very well. I was sweating all the time (the wild onion smell), gaining weight no matter what I ate and getter sicker and sicker. I was now about 200 or so pounds and a total bear/buffalo ? I was retaining so much water in my legs before the operation that I could not walk.
I waited so long for surgery. I was kept on a hidden waiting list. My consultation, after diagnosis in May, was for October. I could not take one more minute of it. I found a surgeon privately, THE WONDERFUL Mr POWELL, who saw me on the Friday and operated on Monday. He also mentioned that had I been referred to him, I could have been seen in a month. Angry does not cover it!
Had my surgey mid-July 2005 and it went well. I was in the hospital for a week and went home as fast as I could. It has been a long, long hard road to get back to normal. I was on replacement therapies for a while but my adrenals started to produce cortisol again relatively quickly and I am now drug free. My bones healed and my skin got better, not perfect, but much better quality. The menopause reversed itself. My hair came back thicker and stronger than ever.
Losing the weight has been the last part of the healing and has proved to be the most difficult. I think because of the amount of lean muscle that I lost, the normal diets just have not worked for me. I also think that the steroid excess for so many years has caused me to have Candida. I knew that high-protein would work best for me as it regulates Candida and it helps increase lean muscle mass. However, I have found it difficult to maintain a high protein as a long term solution. This plan is totally working for me though as it is easy to follow, grounded in science and I never feel hungry. I also have found that with the high protein diets that I have done in the past that when I had the smallest cheat, sniffed a slice of toast, I could put on 3 pounds. This has not happened on this diet (after cheat) and I didn't get disheartened as a result.
I had started my Cushing’s journey at 130 pounds and went up to 230 pounds. I have lost some weight over the last 5/6 years but it hasn't been enough. I hate being fat, I really, really do. It's like a hangover from Cushing's and I don't like it one bit. It totally undermines me. It also betrays my personality, my vim, my vigour. I also feel I have developed a personality that fits around it that is perhaps not me. Anyway, time for it all to bloody go away. It's the last piece of the jigsaw in my recovery.
In every other sense, I am 100% cured. I am "hormonally perfect, in every way" according to my doctor. It's been a long road but I'm on the final straight. I'm running the marathon for the Pituitary Foundation and if you want to donate, you can donate at my JustGiving page.
Anyway, off to do some HIIT on Mabel and cook up a storm!
Kikicee
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