Kara Lynn .NET Blog

Here I go again… on this body of directionless water alone… just me and my will of buoyancy. I keep my son in sight. Grounded on our island, he cries for my return. I will bounce back from this I tell him. I always have before.

I have been sick again. I caught the cold that Aiden has had for nearly two weeks now. He is managing fine with it. He doesn’t act like he feels sick at all. I, on the other hand have been a mess. On Sunday morning I had much more than my usual amount of difficulty swallowing liquid. In fact I could barely swallow at all. I could feel the swollen walls of my throat closing together. I was working hard to keep everything in there from sticking together. I recognized this progression and recalled last June when I ended up in the ER and then in the hospital for four days.

I now keep Prednisone on hand for when my throat swells and restricts my airway. This is to keep me able to breathe until I can get professional help if I need it. Since I was barely able to swallow when I woke up, I knew I might not be able to at all later, so I started the Prednisone as soon as I could get my swallowing coordinated enough to down the tablets. I got through the day. My sinuses and head felt like crap and I was fairly miserable. I started using the nebulizer with Albuterol, some steam vapor treatments, and my new “Vest” airway clearance system. I used the cough machine several times but it was really doing a number on my raw throat. I have to exhale forever to get results. Some pretty ferocious sounds come out of the bottom of my throat during this!

On Monday morning I still felt bad, but was able to swallow okay. I continued with Prednisone and my other treatments. By late afternoon I felt the symptoms of the cold drop into my chest. Just what I didn’t want! My lungs are like quicksand. They’ll pull anything in, but are not so good at letting things back out. The occasional coughing turned to almost continuous coughing with fits of cyclic coughing and throat muscle spasms. During these fits my airway was sticking together. By 10pm I had to work pretty hard to keep the airway open and clear. Again, a progression I recognized. I decided to bother the pulmonologist. He sounded a tiny bit annoyed to have to deal with me at this hour, but at least he did tell me I could go the ER and maybe get some IV steroids that might be more helpful. That’s exactly what I was thinking, so I got ready to go.

My brother, always faithful, came and got me and off we went. I got the IV steroids and a breathing treatment while I waited. I didn’t feel extremely remarkable results from the steroids while I was there, but there was enough improvement that I felt I was on the upward swing back to “normal” now.

I left the ER and was home sometime around 2:30am. I was really touched to find Lewis still up. I immediately assumed he had been worried about me and stayed up to wait for me. In actuality it could be possible he was just up because he does like to stay up late and he had the house to himself and maybe… just maybe he was enjoying that. Sometimes I feel like Lewis is waiting for me to die so he doesn’t have to have all this trouble in his life… a life that was so simple before me. Lewis and I do not have enough of a history for him to naturally feel commitment to me… not the kind of commitment I need right now anyway. If we had been together for decades like so many PALS (Persons with ALS) and their spouses; if we had already made the strong and lasting good memories that glue people together and reinforce the bond during bad times; if we were not so much like co-workers and more like life partners, I think Lewis would be here for me now during this trying time and in the future when surely the demand for help will be so much greater. But as it is, he is not going to go that far for me.

This morning the bursts of coughing were causing great pain in my lungs. My lungs felt inflamed and almost like they were burning. Lewis got up to get ready for work. He had called in sick yesterday, as I was feeling too sick to take good care of Aiden or even myself. With barely any ability to make sounds with my voice this morning, I got the raspy thread of words out “can you stay home?” He responded, “I can’t.” He turned away and continued his morning routine. I felt abandoned. I didn’t like the way I was feeling or sounding this morning. My voice was extremely thin and gravelly… the way it gets when barely anything in my throat is working. What if things turned urgent? Here I would be alone with my almost two-year-old son. Could I even speak if I had to make an emergency phone call? Lewis rarely takes time off work. Would his employers really be that cruel as to hold it against him if he called in on this day after I had been in the ER for treatment just hours earlier? Would they fire him over it? Are things that shaky for him at his job that he cannot risk any rocking of that boat? He will not open up to me about any of this, so I really don’t know. Of course he tells me everything is good. But if that’s the case, how can he choose to leave me here in a scary situation?

Yes Aiden, your mom is out here on this body of directionless water alone, but you are never out of my sight, and I’ve learned that if I just stop treading so hard and fast in the water, I will float, and sometimes I just have to allow the water to hold me up, and trust it will not take me away. I have no caregiver for myself Aiden, but I am your unconditional caregiver, and that privilege, that glorious responsibility, that flawless devotion, gives me everything I need. We have a future Aiden, and we have the glue between us that will always keep us together in good times and bad. You are my lifeline and I will never let go.

-kara