An article from the March 2001 Newsletter.
The one thing I hate about Addison’s, is the insidiously slow way it develops. You wonder why you feel weak, why you can’t shrug off that cold or flu. You blame yourself for getting so unfit and lazy. You get frustrated by the fact that every time you try to put extra effort into something, it gets harder and harder.
In retrospect, I can see that it took about a year from the initial signs to diagnosis - a shorter time than some Addisonians endure. This occurred despite the fact that I was a 15/16 year old, with all the usual hormonal changes. There were school and peer group pressures. On top of that, I had been living with my aunt and uncle, since my mother had died, some years ago. My illness was developing when my uncle died quite suddenly. Not long after, my aunt was diagnosed with the same heart condition my mother suffered from. Understandably, my health status was not at the forefront of everyone’s concern. However, my struggles to keep up with school work and other things had not gone unnoticed.
My health steadily worsened. I had recurring infections, and spent more time at home sick. I would faint on standing. Even a couple of times, when walking, I would suddenly realise I was lying on the ground and wondered what had happened. Eventually I was hospitalised a number of times. With rest, saline drip and antibiotics, I made a good recovery. The cause was passed off as a virus. But, it didn’t take long before I was so unwell I was back in hospital - again.
Coping with my condition was difficult for everyone, so I was moved back to Adelaide, to live with my father. There my condition worsened. I could hardly stand at all, I was constantly vomiting, and could not hold food or drink down. I lost a great deal of weight, in fact I looked like some starving child from a third world country. Eventually, I was admitted to hospital where I spent some weeks having all sorts of tests done to try to find out what was wrong. I recall spending hours trying to keep down some Barium, long enough to take the X-rays! Of course, eventually I recovered somewhat, and went home. Within weeks, I’d be back in the hospital - AGAIN!
The next visit to hospital can only be described as the most frustrating time I have ever spent. I was carried into Casualty by my cousin. The doctor on call, took a look at me and asked if I had been to the toilet recently. I replied that between vomiting and not eating for ages, that I had nothing left in me! He decided that I must be constipated and sent me home with a laxative. Strangely enough, that didn’t seem to help. I was intent on finding him to tell him so, but never got the chance.
The GP was called in again. He took one look at me, and couldn’t believe that the hospital had sent me home. He sent me by ambulance, with a request not to send me home like that again! So, I spent many days in hospital again. This time, the doctors were concerned. My blood pressure had dropped so low, that the staff couldn’t get a reading for three days! They had trouble finding a vein to put a drip in. One time they missed, and my arm blew up like a melon overnight! I was only conscious for a few minutes a day. People came to visit me, and I wasn’t aware of them. I happened to be in a cardiac ward, when another patient was telling a nurse that his blood pressure had reached 200. I chipped in that mine was 50/20. The nurse suggested that if it was that low I’d be dead. When she looked at my chart she was shocked. I was too. It was the first time I realised how close I was to death. All sorts of test were being taken to try to figure out what was going on. They were even talking about a bone marrow biopsy - I wasn’t too thrilled about that. I even had a psychiatrist ask me if I was taking any drugs. I told him I had trouble swallowing an aspirin, let alone illegal drugs. Then I promptly threw up on him….. That was the last time I saw him.
FINALLY an endocrinologist came and told me that he thought I had some rare condition called “Addison’s Disease”, and it was treatable with medication. Usually when a doctor tells you that you have a disease that will require lifelong treatment you would go into a state of depression, not so with an Addisonian. It was like a big weight was lifted from my shoulders, there was relief that I wasn’t going crazy! I recall telling people “ See! I told you I was sick!”. The doctors told me it was hard to diagnose because I didn’t show many of the symptoms, but from what I have read since then, I was displaying almost ALL of the classic symptoms!!
With the right treatment, I started to improve immediately. My appetite was ferocious!! I was making up for lost time. Not only would I order two meals at a time, but got my father to bring in take-away each night for supper. It took quite some time to regain full strength, but I finally felt alive again - and that was such a relief!! Looking back, it must have been a worrying time for my family.
Living with Addison’s has not been as easy as I was led to believe. Although the worst part of the disease always happens before diagnosis, an Addisonian must listen to what their body is trying to tell them. Being a teenager, I was totally ignorant of these messages, and failed to listen to the signals my body sent me. I would forget to take my medication, except when I started to feel sick, so I had numerous stays in hospital, with infections, particularly bronchitis. I also started to smoke - my one true regret.
When I was diagnosed, I was given very little information about my condition. There was even less to be found in libraries. Most of my knowledge came with the experience of living with Addison’s. I had been told that if I got sick I might need to increase my medication. Unfortunately I discovered that many doctors know little, or nothing about Addison’s disease. Their treatment options reflected this lack of information. One time, I had my appendix out. No-one increased my steroid medication, and I suffered a post-op infection and had to be re-hospitalised. Another memorable time, I had broken my leg in a motor cycle accident. When I asked the doctor if I should increase my medication, he said “ no. you are on the correct dose”. I became sick, and spent much longer in hospital than was necessary. The endocrinologist came to see me, and on hearing what had happened with my medication, told me to “tell the staff it needed to be increased. If they didn’t respond, he was to be called immediately!” I enjoyed hearing that. It was the best advice I have ever had regarding treatment. I applied it once too. I was admitted to hospital with an Addisonian Crisis. I told the casualty doctor that I would probably need an injection of cortisone. He didn’t think it would be necessary - until he spoke with the endocrinologist. To be fair, he came back, and apologised to me, with the endocrinologist close behind. My request was granted.
When I was younger, I was more resilient. As I have aged, I find I have to pace myself more, and suffer if I overdo things. I have also discovered what a terrible drug cortisone really is. I have suffered stomach ulcers and constant gastric discomfort. I also discovered, after many years that I was on a ‘higher than normal’ dose. My bone density has been seriously compromised. To be told at thirty seven years, that you have the bones of an eighty year old, is not what you want to hear. Now, I take as much medication to counter the side effects of cortisone, as I do the drug itself. Bone density is one issue I feel is not taken as seriously by doctors, as it should be. If there is one message you take from reading my story, I hope it is that you become aware of this potential side effect. Addisonians should be also aware that they are possibly at a greater risk of developing other endocrine and autoimmune disorders. All of us should have regular checks with our endocrinologist.
As diseases go, Addison’s is certainly easier to live with than many others. I decided long ago, that I would learn what I could of the condition, be prepared for what I needed to do, then ignore it as much as I could in my daily life.
Be thankful for what you have, it could always be worse.
