I told you that a long absence means a decline in my health. Read on for the most important health update I have ever posted over the years.
When I heard the news that my pulmonologist wants me to go on a ventilator, I thought, “I’m not ready. I need more time free of a machine.” Another few years wouldn’t have changed that feeling, though. I can’t believe my time is almost up. If not for the technology of a ventilator, my lungs would just stop. I just really felt that my will was strong enough to make a difference. I was stubborn and arrogant, as if no one before me ever had this much fight in them. I am no different than any of thousands of other people living with this merciless disease.
I have no delusions about how difficult my future will be. My greatest fear is that we won’t be able to organize the 24 / 7 care that is necessary for people on ventilators, and I will end up in a group home. Being on a ventilator will be a hard way of life, but I will be alive. As long as Evan lives, I am not done. I will do absolutely anything to stay here on earth with him.
I’m afraid, but there is a great deal of work to do now, so I’m trying to be brave and throw myself into it. We are making a list of questions for the medicaid representative regarding skilled care coverage and availability (even if care is covered financially, finding caregivers who meet Medicaid’s rigid qualifications can be a real struggle).
My neurologist said I’m ready for this in a lot of ways because I already use the hoyer lift for transferring, the tobii for communicating, and the feeding tube for eating. I guess people whose lungs fail first have a really hard time adjusting to losing speaking and eating all at once because the trach (the procedure to go on a ventilator) takes away all that. I have had the luxury of easing into ALS in a way I can tolerate. For that I’m immensely grateful.
So here we go on yet another ALS adventure. I am dealing with negative side effects of living with lungs that are only functioning at 25%, mostly extreme exhaustion. I wake up tired. I have to take a long nap after getting my hair brushed and face cleaned. I’m looking forward to being more energetic. I miss spending time with Evan, family and friends, writing and reading. I miss my life. The ventilator should give it back.