About a week and a half ago, I got a sore throat, I lost my voice, and started creating sinus and chest mucus in large and disgusting quantities. Jay got a touch of this, too, violating our usually hard and fast rule that only one of us can be really sick at a time.

He was in a bit better shape one day, and so got sent to the store to buy as many boxes of tissues as he could carry (with and without lotion – he loves the lotion version when he’s sick). He was sneezing like crazy, and I was blowing my nose about once every ninety seconds. We have filled paper bags with snotty tissue all over the house.

I also got nasty aches (worse than my normal Lyme pain), extreme exhaustion (even for me), chills, and a low-grade fever. My lungs got involved early on with a wheezing, “productive” (doncha just love that word?) cough that has me worried I could have pneumonia or Pertussis. I was diagnosed with Pertussis, or Whooping Cough, a couple of years ago. It was not fun.

I’m not coughing hard like I did two years ago, but that may be because I’m working hard at not coughing. When I do, it hurts and I don’t like worrying that I may toss my cookies (or experience what my Mother, the nurse, used to call a, “Green Burp.” The less said about that phenomenon, the better).

So far, no cookies tossed, although I came close last Tuesday when I lay down so Jay could give me my IM Bicillin injection. Once I realized what was going on (or coming up), I made a mad dash to the bathroom (which is thankfully close). I got there in time to experience the aforementioned and much dreaded Green Burp, but avoided anything worse.

Laying flat has turned out to be risky business. I spent three nights sleeping on a recliner because if I lay down, the phlegm in my chest took it as an invitation to come on up and have a party. I told Jay that while I miss the cuddles with him, I figure barfing in bed is just not very sexy. No argument from him there. We were both relieved when I was able to join him in bed again (propped up on pillows, mind you), two nights ago. Cuddling was reduced to playing footsie, since, once propped up, I really can’t move without inviting trouble.

After a week and a half of this, Jay is thankfully much better and I’m a little better, too. He’s still sneezing. I’m still wheezing. I see my primary care physician for a “touch-base” visit and blood tests this Friday. If I’m still sick, I’ll see what she thinks about Pertussis or pneumonia.

On a happy note, I started a new serious-ass pain killer this week (Oxycodone). And my LLMD also added oral Doxycyclene to kill the Erlichiosis. I’m afraid the pain killer is too low a dose –  it seems to wear off after four or five hours when it’s meant to last 12, and most of the time barely takes the edge off my pain. But I have high hopes for the Bicillin/Doxy combo.

I’ll keep you posted.

Seven Years

I have too little and too much to say on this anniversary of my Mother’s passing. I’ve been thinking more lately about the chaos of when she was diagnosed with stage-four lung cancer, nine days before my wedding, four short months before she died.

But to commemorate this anniversary, I will reprint a vignette I wrote last year. I hope to work into a full memoir someday — right now it is just a short scene that happened a few days before she died. It captures, I think, the sweetness of how she lived and how she died.

Four Days Left

Mom cooperates sweetly during her bedtime ritual, even trying to pee when she is uncomfortable and doesn’t really have to go. After she is clean and tucked-in, we gather around the hospital bed Dad set up in the guest bedroom. Mom’s been unable to leave this room for the past week, since a stroke made it hard for her to move on her own. She can no longer speak in whole sentences, sometimes not finding a single word she needs. Even so, she says goodnight as best she can to each of us standing around her bed. We kiss her one by one, turn out the light, then adjourn to the kitchen, exhausted, for tea and quiet conversation about the day, her meds, what she managed to eat.

Mom calls to us a few minutes later. Margaret and Sarah go in to see what she wants. Dad and I enter the room a minute later, and see Mom desperately trying to communicate something to Margaret and Sarah. Mom looks relieved to see me, since I often can guess what she wants to say. I walk around the bed to her right side, her good side, take hold of her right hand in both of mine, and look into her eyes.

“What do you need, Mom?”

“All together.” She says slowly, emphatically, trying to lift her head as if to prove her point. “Here. All together.”

She’s been wanting to pray more lately, especially since the visiting minister from Central Lutheran Church brought her communion last week. I think she was surprised at how healing it was to make peace with a church that had disappointed her so much over the years. And I suspect she found more comfort than she anticipated in her old rituals.

I ask, “Do you want us all to say a prayer with you, Mom?”

“Yes!” She leans back into the pillows, closes her eyes, and breathes a heavy sigh of relief.

“Do you want me to sing?” She doesn’t answer, just smiles with her eyes still closed, exhausted.

I’ve been singing to her a lot lately, especially a version of the 23rd Psalm written by Bobbi McFerrin for his mother. I think Mom likes it because he uses the feminine pronoun to refer to God. I also think she likes the fact that I once recorded it on CD when I sang with a women’s a cappella ensemble years ago – she was so proud. It’s designed to be sung in seven-part harmony. I have simplified it to a single line of melody.

We form a circle holding hands, shoulders, arms, whatever we can reach over the hospital bed, some sitting, some standing. I begin.

The Lord is my shepherd, I have all I need.
She makes me lie down in green meadows,
Beside the still water, She will lead.

Mom nods her head, smiling, between each line, saying, “Yes! Yes! That’s true!”

She sets a table before me in the presence of my foes.
She anoints my head with oil and my cup overflows.

“So true!”

She restores my soul, she writes my wrongs.
She leads me on a path of good things
And fills my heart with song.
Even though I walk through a dark and stormy night.
There is nothing that can shake me
She has said she will not forsake me I’m in her hands.

“Yes. Yes.”

Surely, surely goodness and kindness will follow me
All the days of my life.
And I will dwell in her house forever, forever and ever.
Glory be to the Mother, and Daughter, and to the Holy of Holies.
As it was in the beginning is now and ever shall be
World without end. Amen.

I am in terrible voice, but it doesn’t matter. Mom is beaming.

We kiss her good night once again. Dad, as always, gets the last lingering moment with her, nose to nose, whispering that their love is a star in heaven that will last forever. Satisfied, Mom sighs deeply and turns over on her side. Dad turns out the light.

We all sit quietly in the living room, slightly stunned. Mom’s childlike voice travels down the hall.

“Goodbye,” she says sweetly to the dark. “Goodbye.”

The New Normal

If you’re keeping score at home, I’m up to eight IM Bicillin injections over the last four weeks.

The herxes seem to be getting milder, especially compared to the morning I couldn’t walk. My reactions since then are more confined to the “regular” type: Increase in muscle and nerve pain, muscle twitching, shoulder spasms, joint pain (especially in the hands and fingers), cognitive/memory decreases, dizziness, decreased depth perception, vision problems, heart arhythmias, increased anxiety, etc. (It’s a very long list.)

There are occasionally strange and new twists, like a new muscle aching or twitching, or a new level of memory loss (especially long term memory — I seem to be losing more bits than I used to). And I got a strange blood blister on my glute a week and a half ago (not related to the injection — could be Bartonella from what I’ve read).

But mostly the Herx reactions have simply been worsening of my current symptoms. For which I’m grateful.

I would give a lot to be able to take a strong narcotic every day, but that is not an option for me at this point. So I stick to the Lidocaine patches for pain in my body core and use my Alpha-stim device for extremity pain and anxiety. My emergency stash of Tylenol 3 kills pain system wide for a little while, which improves my mood, emotions, ability to get around and do things. It even improves my focus a bit.

What I’ve learned from narcotics is that chronic pain is a terrible deteriorator. It eats away at my energy, darkens my worldview, draws a filmy curtain between my truly difficult present and any possible brighter future. The bleak looks bleaker. It seems as if pain has been my constant companion, my only companion at times. I have lost my ability to remember what a pain-free day is like. I can’t imagine a pain-free future at the moment. Like Frodo on the slopes of Mount Doom, I’ve forgotten the taste of strawberries and the feel of grass beneath my feet (sorry – we watched the entire movie trilogy in the days leading up to New Year’s Eve.)

After a while, I’ve noticed that constant pain starts to fade from my consciousness. If it did not, I wouldn’t be able to get up in the morning.

There are times I might say that I am fine, I feel normal. What this fails to communicate is that my new “normal” is a pain level of 6 or 7 (10 being the worst pain I can imagine. My symptoms grow interesting only when they hit an 8 or 9.

Even then, I probably won’t mention a new or painful symptom because I know there’s nothing to be done (other than Lidocaine or Alpha-stim, if I can). And people glaze over hearing about my symptoms. Even I glaze over. It’s boring. It’s simply too much to take in. This amount of suffering is hard to imagine, almost impossible to believe. Even for me, and I live and breathe it.

Now that I know what is causing my symptoms (neuro-Lyme or other tick-borne infection), I rarely panic. There’s no need to call a doctor or visit an ER unless I’m bleeding or have stopped breathing. Or if I have classic heart attack symptoms (different from the heart pounding arrhythmia that can drives me just wild).

So it must simply be borne while I use medicine to try and get well.

Does all this sound like whining? It does to me, and I hate that.

But it is what is real. As I’ve said elsewhere, I’m sick of pretending that I’m “fine.” And by telling the truth, even if it’s only here in my blog, a layer of stress is lifted off me, which makes everything a tad easier to bear.

All part of the new normal.

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