All Tied Up…

If I thought that my independence was compromised when it was necessary to transition to a wheelchair when leaving my apartment, I was in for a big surprise when something even more limiting was introduced last week – a fifty foot tether.

With my increased difficulty in breathing, my nurse strongly suggested that it was time to start oxygen therapy. I wrangled with the idea over Christmas Day whether I should proceed or not; having signed a “Do Not Resuscitate” order a few months ago I didn’t know if going on oxygen fell contrary to my wishes to forego life supporting measures as my illness progresses.

A chat with a palliative specialist assured me that even in hospice oxygen therapy is used to make patients more comfortable, I would not be acting against my DNR. That chat being only part of a longer meeting at my place during which I finalized all the paperwork for my admittance to hospice for when I, my loved ones or my doctors decide that I’m ready.

Friday afternoon and evening was a whirlwind. Let me say that getting oxygen set up at the onset of a long weekend leading up to New Year’s Eve is no easy feat  - but thanks to the persistence and kindness of my nurse, a few friends and my family doctor (who was on vacation but insisted on doing what she could to help me out immediately), I had oxygen within hours. Plus a few new prescriptions to ease my respiration and to take the edge off of the unrelenting pain.

The oxygen is helping somewhat, I can sit up a bit longer than I’ve been able to in weeks. And conversations are interrupted less by the hacking coughing jags (my daughter’s catch phrase – said with love - since coming home for the holidays has been “Lungs. Keep them on the inside please Mom”).

Over the years I’ve been administered oxygen a few times when laying in a hospital bed, but trying to carry on simple tasks around the apartment with a hose up my nose is no easy task.

I learned a tough lesson the second day that one really must sit still for a bit after removing oxygen to allow the body to readjust. A lesson that I didn’t seem to grasp after the first catapult towards the floor either.

The constant whine of the oxygen concentrator is a rude reminder of my illness. The travel tanks (what kind of trouble can I get into on a three hour outing?) sitting in my living room don’t help (mind you, the loaner wheelchair resting there doesn’t help much either).

Not to mention all the rules that come with oxygen therapy. No candles, no going near a stove in use (a twist that will be interesting to work around given that I have a freezer full of meals that need cooking). A sign on the door stating that on the other side resides a fire hazard. And one cautionary note that surprised me is that I need to check that none of my facial products or lotions contain petroleum (out comes the magnifying glass to check out all the labels). Here I was thinking that the technician told me that they couldn’t be used because they could degrade the plastic tubes – it’s because they could ignite!

The fun doesn’t end there. The government will only supply the equipment for a short time, here goes another round with the insurance company to get coverage beyond that. I’m been warned that given my diagnosis of a such a rare disease that this process could be rather problematic. When hasn’t it been?

This morning I lost it. Ripped off the oxygen and had a good cry. Which I might add is really not a combination conducive to good respiration. In five short days I’ve become so frustrated with nasal prongs that fall out whenever I bend over, tripping over the hose when I tried to get out of bed, the sharp pain up my nose when the kitten yanks the hose in the opposite direction in a spirit of play.

Tired of having to plan out every move in the apartment, or even just in my bed.

The oxgyen went back on after my short-lived cry.

The kicker to all this is that I’m fighting so hard to stay as independent as possible in an apartment that I despise being in. The contradiction can’t help but slap me in the face. If you interpret this post as that I’m feeling sorry for myself today, you’re absolutely right.