I have progressively watched my husband deteriorate over seven years. The man he was when we were dating was not the same man that slept next to me after our wedding. The changes were subtle and for a long time, we chalked it up to us getting older both in our relationship and age wise. Sleeping more yet always exhausted. Not as frisky as when we first started dating. Frequent urination – four to five times during the span of a movie! Having problems concentrating or focusing. Not as mentally sharp as he once was. He would always kick my ass at Trivia Pursuit without fail. I’d make him fill up two whole game pieces to my one. I’d also get plenty of hints and extra clues. The day I won with minimal assistance, and he had not filled his one game piece should have been alarm bells. I, however, was on cloud nine that after four years, I had fairly won a game of trivia pursuit against him! Perhaps I was getting better with age! It turns out; I had not fairly won.
If for not the fact we were trying to conceive, I do not know how long it would have taken us to seek answers and treatment. The relief of the diagnosis of panhypopituitarism, and that it was treatable was monumental and misleading. We had answers, a game plan, and we were going to be okay! He started on his one hormone supplement and began to feel better. Better is a relative term. It is all dependent where you are on the scale from frowny face to smiley face. He was at worst possible (hormone level of 0).
As the months passed and he did not make the rebound either of us expected, I kept making up reasons why. Such as we were unable to get his second hormone but once on that, he was going to be 100% okay. We got on the second hormone four months after the first and he did improve but he still had a long way to go to get even to a grimace. Then he started complaining of tender breasts along with pain in his arms. Both of us noticed that he would begin to swell, gaining pounds of water. The doctors would do bloodwork, tweak his hormone injections (often reducing them till the symptoms went away), and add more medication to balance the side effects. In December, it will be two years from his diagnosis. We are still tweaking.
Through all of this, I waited for him to morph back into the man I fell in love with oh so many years ago. It was not happening fast enough for either of us. I was ready to stop being the cheerleader and caregiver. I wanted to go back to being his partner and start to be his wife. I kept seeing him take a step forward than being forced to take two steps back. I know it was hard for him and still is – it is hard to watch and be able to do nothing.
It took me about a little over a year after his diagnosis to fully realize that what most of our bodies do so naturally and seamlessly is something that modern medicine has yet to figure out. Treatable and curable are not the same. We can make his symptoms less severe. He may never make it to true smiley face. Though we are both slowly coming to terms with what life with panhypopituitarism will be like. This is our new normal. We have good days and less than optimal days but I will gleeful report that he is back to kicking my ass at trivia pursuit.