My husband is upset and worried. He knows of course that I have a 2 serious forms of arthritis. He knows I take serious medications to control not only the inflammation but the pain. He knows these medications have serious side effects, the worst being horrible intestinal pain, and that there is an ever present danger of ulcers.
He understands that I often spend part of the day or night hugging a heating pad and crying in pain. There is the acid burning and trying to sleep slightly upright to keep the acid reflux down. There are prescriptions for Prilosec, that don’t work well.
He knows all this, but I’m still here.
Then he read about the death of Glenn Frey, musician and member of the Eagles band.
He understand that these horrible immune diseases are going to kill me sooner or later. Unless I’m hit by a truck or some other disease carries me off, this is going to be on my death certificate.
The problem was his reading the details of Glenn Frey’s death. The long term hospitalization. The induced comas. The side effects killed Frey, and it wasn’t pleasant and it wasn’t quick. The number one death of RA patients is ulcers and side effects from the medication.
Frey worked out, he was a “workout warrior” to keep his RA in check as much as possible. I unfortunately do not have enough control over my disease yet to be a “workout warrior”. Gentle walks are a huge step up for me. New medications are helping a lot, but my case is far more serious than that of Frey. Working out is not an option. That was huge, because my husband believes I am “doing fine”… or as fine as it is possible with this serious illness.
Frey had his disease for 15 years. Mark sees this as perhaps only having me for only 10 year more, and possibly less. That scares him.
What scares me is the sort of drawn out death of months in the hospital. I truly dislike being in the hospital. It’s depressing, it’s boring, it’s often painful and it’s scary.
So tonight when I had a terrible attack of acid reflux and pain, he was upset. Because he sees this as a hint of how our future is going to end.
We then remind each other, that much of the time we are happy and doing well. That there are the gentle walks with our dog we enjoy so much. The movies we watch together and enjoy. The decorating of our new one level home, which we moved to knowing that one floor living was important for my safety and comfort. There are many good times yet to come. Most people don’t have a very pleasant or pain free death.
Those of us with chronic diseases understand much like Frey, our fates were sealed with our diagnosis. It’s how many years, and the quality of those years. I hope that I can keep my focus on the good times, and keep my husband’s focus on those good times also.