Photo by Michael Dorausch
Three years ago, my fiance, S, started a long journey to repair a herniated disc that included two posterior lumbar and one anterior lumbar fusions. Due to his inability to grow bone, the posterior fusions never "took". The anterior fusion was simply to stabilize his spine. The area where the disc used to be is now completely encased in a titanium cage. The titanium cage does not move like the rest of the spine, which puts pressure on the discs above the fusion. The failed fusions, combined with the pressure on the adjacent discs have left him in constant pain, unable to stay in one position for any length of time and on heavy narcotics. He will never get better without a miracle, he will probably get worse, and he's 40 years old.
In addition to his back problems, S also has rapid cycling bipolar disorder. We have spent the last five years finding and tweaking the medicine that works for him. Unfortunately, his bipolar medication causes his body to absorb the narcotics at a much higher rate than most other people. And, the narcotics affect the way his body handles the bipolar medication. He walks a very fine line, medication wise.
As anyone who lives with and loves a person with a disability knows, his health problems do not only affect him. It affects the whole family. As his partner (for lack of a better term), I have become an "expert" in S. Ask me anything about his medications, how they interact, what happens when he misses a dose, his pain levels, his moods, etc., I can give you the answer. I am his advocate, his cheerleader, his chauffeur (he doesn't drive), his nurse, his whipping bag, his spouse. The order of these roles changes on a daily basis. I am the person who tells the doctor how it really is, because S is so sick of talking about it and just wants it to go away. I pick up the pieces of our life that he can no longer do along with the chores I already did. And, I try to smile while doing it. I am 37 years old.
I am starting this blog to help other people in my situation. There is all kinds of information out there for caregivers for the terminally ill or older individuals. What about those of us with small children and a life ahead of us? How do we deal with the fact that our plans for the future are drastically changed? How do we deal with the fact that we will be living with this for the next 40 years? Where do we fit in? My hope is that I can be a help to other people in my situation and that they can help me.