I have decided the time has arrived for me to tell my story of living with Sean and fibrous dysplasia (FD).
The early years of our marriage were so hectic for various reasons that FD never seemed to be an issue. I was not aware of the extent of the condition or the extent of Sean's pain and I really did not become aware of Sean's pain level until he quit drinking. However, when you have married an alcoholic and they "recover" you find yourself living with a different person and once again FD was not at the front of my mind. I can look back now and see that many of these early struggles were aggravated by FD but I really did not have an understanding of Sean's condition and Sean has a tendency to not tell you when he is in pain.
Once our marriage stabilized I started to become more aware of how FD was affecting Sean. Over the years I have noticed that during times of high stress Sean's pain is much worse (not unexpectedly). I also noticed that at these times you could see noticeable growth in his brow bone. Even before we had MRI scans to measure the growth level I could physically see the growth and the change of his facial features.
In September of 2008 Sean had facial reconstruction in hopes that some pain would be alleviated and to shape his face back to normal. The surgery was the most trying time of my life. It had only been a year since Sean had gotten on a good pain therapy and was himself. I stayed at the hospital during the four hour surgery time and received updates from the operating room about every hour. Once Sean was moved from the recovery room into a hospital bed a nurse shot his IV morphine directly into his vein and Sean started to have trouble breathing and his lips and toes were turning blue. Praise to God that the head nurse arrived in time and was able to give Sean another shot that revived him. After this experience Sean was not willing to be left at the hospital alone so I spent the next four days by his side. The hospital also would not give Sean his sleeping pills so we both spent all this time awake. When Sean came home from the hospital he was on major pain meds and was very sensitive to light and sound so I spent the next two weeks trying to keep all the pets and the kids outside. The extreme sensitivity to light faded but the sound sensitivity is with us still today. To be honest I often ask myself if we did the right thing by having the surgery because for 14 months after the surgery I felt as if I had lost my husband.
During the past four months we have achieved a quality of life for our whole family. Of course if you have been following this blog you know that last month that was thrown into chaos. As we are now facing a new round of pain management I will explain the emotional roller coaster I have lived on and that I fear repeating.
Over the years I have learned that Sean usually has three reactions to medicines. One reaction is extreme aggression. Another reaction is extreme docility and loss of muscle control. The other common reaction is hyperactivity. All of these reactions are coupled with an inability to make good decisions. For example one time Sean went to the store and bought $100 dollars of Pringles because he was sure that my mother had asked him to. I was out of town and he called me from the store because he could not remember how he got there or where the car was parked. After this the whole family learned that even the drugs that Sean had been on for months could have different reactions on different days.
We worked with our doctor to determine a pain therapy that very seldom had these reactions and that were predictable enough for me to know what to expect. Now that we have to change doctors I am faced with losing my husband. When Sean has any of these reactions to a medicine I lose the man I love as his personality becomes so different. I set here today with my husband and wonder how long I will have my better half. I remember so clearly one day walking through the grocery store with Sean following me like a puppy dog and tears still stream down my face. I called my best friend that night and said I'm afraid I saw my future today and it feels like my spouse died. Thankfully we were able to get on a therapy that brought Sean back to me but my heart quakes as I think of our Dr. appointment Friday to look to an alternative medicine as we can no longer seem to find a traditional doctor that is not afraid to give pain meds or wants to treat Sean as a Guinea pig.