Since I'm awake pretty well constantly, I actually have a near-compulsive amount to share with you all on a wide variety of topics: knitting, sewing, body image, lingerie shop along follow ups (trust me, you're gonna love that post), food, holiday gift purchasing... The list goes on.
No doubt, it's a good sign that I have lots to say. It's a good sign that I've been able to go to work (even if I am a washed-up version of my work-self lately). It's a good sign that I've been off the prednisone for almost a week and I'm breathing (though not in the regular way). It's a good sign that I have picked up the pace on my crafting. It's a good sign that I can eat a wider variety of foods.
And yet, if on a scale of 1-10, regular-self healthy is a 10, I hover between a 4 and a 6 at any given time. Sure, I do hit an 8 occasionally, just as infrequently as I descend to a 3. Since I was at a 2 for a good month - I mean a terrible month - I realize that this is statistically relevant improvement and a move in the right direction. But I can barely stand this. It makes me want to flee from myself and there's nowhere to go.
The most prominent of the remaining issues are these:
- My throat hurts ALL the time. Especially where the ulcers line on the left-side. While this seemed to be getting better, yesterday it all came back hard and hurty. To feel like things are moving backwards - even though, in truth, I have no idea what's happening, the path of healing is not linear (she says, like a mantra) - is distressing.
- My throat is swollen. I haven't had stridor in 2 weeks, so thankfully, but I have had a couple of coughing episodes in the past few days that have moved me unpleasantly into its domain. Since I'm not on the prednisone, I worry. While I was on the prednisone, I worried. (That shit is serious and likely the cause of the ulcers and associated throat swelling.) My throat seems to be swollen no matter what. It's a matter of degrees and under what circumstances. Of course, it's much better to be my own self, managing the swelling and moving away from ulcers. But it's scary. It's like I am in constant dialogue with my throat. I sometimes feel that it's a mentally-unstable Hollywood starlet from the 50s and I'm a director, desperately trying to make that studio film. I've got to get this throat into rehab people. And method classes! :-)
- The laryngeal mucous issue continues. Sure, it's better overall. Occasionally, it even goes away for a couple of hours. But it seems always to return, after food, and then - since the mucous is all but immovable from its perch in my swollen throat - I have to worry about it inducing coughing (which increases swelling) or blockages (requiring scary coughing to dislodge it just enough to restore breathing).
- OMG I need to SLEEP. People, I can't drink booze. I can't eat anything remotely enjoyable. It hurts to talk. Singing is off the table (something I love to do that calms me down). The only mood-alteration option left, never mind that its health-restoring, is fucking sleep. Is it wrong to want to forget about this for a few hours at a time?? I have fantasies (hallucinations?) about doctors telling me that they can put me into a totally safe, medical coma for a week (like a spa! in a beautiful room in a beautiful locale - not that I'd know the difference) and when I wake (in the beautiful room in the beautiful locale) I'll be totally healthy and ready to go sit under an umbrella at terrific restaurant and drink an entire bottle of wine with a steak frites followed by a vat of chocolate mousse. No vegetables in sight!
- I'm almost disinclined to mention anxiety in its own bullet. You can certainly read the anxiety that's woven into every sentence. For some, this would be debilitating, I imagine, but I am no stranger to anxiety. I have coping skills and, when it all gets to be too much, ativan. (Note to reader: You must not abuse this stuff. It's very addictive. I won't take it 2 days in a row. I'm on the lowest dose available and its primary benefit is to induce sleep... I am all for mood alteration, I'm a hedonist!, but not with controlled pharmaceuticals.)
Man, I really do sound like a mess!
Really, though, you should have seen me 3 weeks ago. I'm like a normal person by comparison. :-)
I recently learned that a former colleague contracted pertussis four years ago after an operation. Her coughing was so extreme that she had to be reoperated on to correct damage caused by it. She said it was the worst illness she's ever experienced and that she was beyond sick for 7 months.
When I heard this horrid story, part of me was so glad to know someone else who could relate. Though her experience was very different than mine (and much more serious!), here she is, 4 years later, alive and healthy. The other part of me has to believe that I will feel better more quickly than she. By her own admission, my colleague began her illness in a less hardy state.
I find it ironic that Public Health has only just started delivering flyers, and booking segments on the news, to warn people between 20 and 65 about an emerging potential health crisis: pertussis after lapsed vaccination. Those people should put me on a fucking poster. Especially now that I'm so attractively thin :-)
Yeah, I'm dramatic, but I come by it honestly. I have been this way my entire life. I bring it to every experience, minor or extreme. It infiltrates my every mode of expression. No doubt, you know this about me by now. People, for as long as I can remember, have told me I should have a television show. Or a role on Broadway. I reiterate this because I want you to know that I recognize there are SO many people struggling valiantly with serious, chronic or life-threatening illness in the most courageous and reserved fashion.
I am neither courageous nor reserved. I'm a freaked out wuss who talks about everything extrovertedly. For what it's worth, I sincerely wish that people struggling with serious, chronic or life-threatening illness would talk or write about it to their heart's content. I pray for people who struggle as such, if they have little else to comfort them at times, please speak.
I say to anyone who may fall into that camp: Your voice matters. Your experience is valuable, not only to you, but to everyone with whom you communicate. Illness is part of the fabric of human existence. You are not isolated, you are a front-line participant. We, all of us, exist in a continuum from birth to death and beyond. Speak loudly because you are a bellwether. Speak loudly because you shouldn't go through any life experience alone. Speak loudly because squeaky wheels get the grease. And everybody's wheels squeak eventually.