End of summer check in
Erella Ganon
I try not to write too often.
All of a sudden, I notice that the summer is nearly over and I haven't sent an update in a while.
I went to my Princess Margaret Hospital (PMH) to see my endocrinologist a couple days ago. It was the day that much loved politician, Jack Layton died. The last time I saw him was at the PMH. He was on the main floor and I was on the balcony above. What a giant smiling man, even looking fragile in the wheel chair, being pushed by his fabulous wife.
It is always daunting to be in there with people who's challenges dwarf mine.
The people in the waiting areas look so gaunt, worn out, worried and without much hair. I am always reminded of Auschwitz. I feel that I look so conspicuous there. My skin has a skin colour to it and my time in the sun this summer, riding my bike or visiting friends in the country has bronzed my arms and face with the healthiest of glows. I have never been a fan of sunbathing, but this year, I am loving every freckle that shows itself despite the sunscreen I slather on.
If there is one thing I have learned by this journey is not to measure or compare a person's load.
I hate it when people compare what they have to what I am experiencing.
Please, if you have a broken foot, don't say, "It's nothing like the pain and discomfort you're going through".
Pain is pain. Discomfort is discomfort. I know the difference and neither is a pleasure.
I don't want you to have a sore tooth or a broken foot. It all sucks and I wish you health.
This may sound nuts, but I often think it is good that it is me that has this set of challenges.
There are many people that would be destroyed by this and I will survive and become stronger. If someone has to endure this, in a way, it is good that this befell me.
I wouldn't have asked that this happen to me.
I must say, I am happier than I have been in a long time and becoming much stronger too.
The good doctor has temporarily stopped me from my weaning.
I was getting a little impatient and was pushing my weaning forward, desperate to get to a healthy dose of cortisol. I got to 32.5mg of cortisol a day. It was literally (*proper use of the word) killing me. I had been vomiting on the weekend. I told him that brushing my teeth often instigates a gagging reflex. I have a lot of crazy new pains and ailments that I don't like or understand. He said it was all my body going into Adrenal Crisis and that is very bad for me. He told me that the next time I vomit like this, I will have to go to hospital right away.
Yergh.
He said my vital signs, my white cell count were at alarming levels and advised me to go to 40mg of the steroid again for a while. I have been rather stubborn. I have been stingy with this. I want to minimize the amount of this drug I am putting in my body. He spoke sternly of how I must take this seriously. I absolutely got the message this time.
Friends like Sue Young and my doctor have been reminding me that it is important to look at how my body, (not someone else's) is dealing with this.
On the internet support board for the people I know who have similar versions of my very rare condition, there is no one that I know of that is taking more than 20 mg a day of the stuff. Many of them had the extra weight cushings disease put on them, melt away when they got to about 20mg of the cortef.
I whined on to the good doctor with words describing every detail of my frustration.
He talked about my.... MY quality of life and said that playing with this could very well kill me. He wants me to be healthy. He specializes in cancers of the endocrine system. I am sure I have been his patient longer than most. If they get better or die, they stop seeing him, I suppose.
Urp.
I told him I was grateful that if there has to be a doctor and a patient, and one is obsessed with numbers and the other wants a good quality of life for the patient. I am feeling lucky that I have him watching me. I asked if it was possible to put me into a hospital, have someone monitor my vitals and give me 20mg and let me suffer in agony for a period of time, and let me recover from the withdrawal. He said my body would quit if I did that. He was sympathetic and understanding of my frustration. I really thought the last surgery, the Bilateral Adrenalectomy (BLA) was life-threatening but once I survived that, I would be feeling much better and eventually be free of this.
He reminded me that I am not dying now. I had a fatal, incurable disease and now I am learning how to manage the version of the disease that I have left . My life expectancy has increased significantly since the BLA.
I get it.
So this is where I am.
Happy and enjoying the city in the summer.
Last night's lightening stole everyone's thunder.
Beautiful.
I send you love.
Erella