Not Much Cheer This Year

Gee, I’d sure love to write something uplifting during the holidays. Not likely this year.

On the other hand, I am managing to remember that I am not yet bed-bound, not yet so disabled that I can’t walk at all — I need the power chair only for distances of more than a block or two. I can still breathe on my own, and my heart still beats (even if it does so with a nasty, though harmless, arrhythmia that can scare the hell out of me). Pain, while constant, is unbearable only for spurts. And I seem to be getting used to it (good thing since I seem to be allergic to most pain medications).

For this holiday season, this dark time of the cycle of our planet, I guess I’m giving up the façade of acting happy, OK, or pretending that I’m getting by. At least here in my blog. I am (some would say finally) taking stock of what I have lost. Here’s a bit of what goes through my mind.

If I had not become infected when I was so young (30-40 years ago is one guess, probably in my teens), perhaps I would have been more resilient when family, lovers, and friends failed or betrayed me. I would have been less devastated, more outgoing, perhaps made better decisions. I believe I would have been able to bounce back more fully than I did when horrible things happened.

But I didn’t bounce back. And as the years wore on, bacterial infections started taking my life piece by piece. Continuing with that all important ability to cope with disaster.

I actually showed considerable ability to cope early on. But I believe that neuroborreliosis (and the other tick born illnesses I’ve got) slowed — and then halted — my ability to rebound. It wore me away over time.

If I had not become infected, I’d have a body of artwork by now. I know I’d have an art studio and be producing (and selling) wearable art. I would be spinning and knitting and felting. Weaving. Sketching. Creating polymer clay creations. I would be designing and sewing clothing. Pursuing all those creative passions that give me so much joy.

My career with them was halting in the first place (due to illness, resiliency, etc.). Now, because I can no longer use my hands all that much, I’ve given away or sold most of my art supplies. The rest are in storage, which is silly. It would cost less to get rid of them and rebuy them (if I ever got well again) than to pay for storage each month. But I don’t have the energy to go through them. So there they sit.

I would have been writing seriously for decades. I would have published articles regularly. I might have written a book. Or two.

I wouldn’t have sold my piano ten years ago, when my hands stopped working. I would still be playing classical and jazz and who knows what. My heart still breaks when I remember I no longer have a piano. And that if I had one, I couldn’t play.

And this fall, I found out that I can no longer sing. I took a vocal performance class, and found that my body is too frail. Singing, I remembered with a shock, is physically demanding. Don’t know what I was thinking. But it’s still a shock.

And let’s not forget my inability to work. Generate income. Bring home the bacon. Since becoming disabled, my income has been cut down to about a quarter of what I used to make. And the cost of insurance takes about a quarter of that. If I were able to work, well, let’s just say things would be a whole lot more financially secure. And I’d have the joy of going out into the world, which I miss terribly.

I would have friends. I know what it feels like to have had them. At the moment, I know what it means to be very, very lonely. Which is infuriating because I know how to make friends, good friends. But one must be well to do that work. And it is work. It requires creativity, commitment, and reciprocity. Energy. None of which I’ve got.

Finally, worst of all, is my inability to volunteer (a great way to make good friends, by the way). For a while, when I became so sick that I could not work any more, I dreamed of being able to volunteer in meaningful programs locally with all my new “free time”. What a dope!

First of all, I was (am) in such denial that I didn’t (don’t) realize that I’d become (I am) one of the “less fortunate” who need volunteers to help them out.

Second, a chronically ill person has no free time Or energy. It all goes toward treatment management, symptom management, recording symptoms and medications, doctor’s appointments, and everyone’s personal favorite, sparring with one’s medical insurance company. All other normal chores (paying bills, cleaning house, doing laundry, cooking, marketing, family engagements), fall to the bottom of the priority pile. They often don’t get done at all. (Thank god I have a partner who pays bills, or I’d be in jail.)

There. It’s not a complete list, and I reserve the right to add to it later. It’s just what’s on my mind at the moment.

IM (Bicillin) Tomorrow

It’s been a tough fall. As well as a rocky spring and summer. Since I last checked-in here about my illness (was it really October 2006?) my treatment has taken many twists and turns. Including oral antibiotics for Lyme and Bartinella, IV antibiotics for Lyme and Bartinella, more orals for Babeosis, and most recently, I have gone off all antibiotics for a couple of months in order to let my liver take a rest.

Some symptoms have definitely improved, especially since I got serious about going off of gluten last winter. I rebelled against the tests that showed I have a genetically-based inability to digest gluten. Those test further showed that my body was having a severe immune response to gluten and casein, from cows milk. I went off gluten and casein (and the other foods I’ve grown sensitive to, at least a dozen) and felt better. I hated changing my diet, so insisted it was all a coincidence and I went back to eating gluten. Surprise, surprise, I felt way worse.

Last January, I finally screamed, “Uncle!” and really went off gluten, dairy, and the other foods I tested sensitive for. I lost 30 pounds without trying. Some swollen body parts have almost normalized. Blood pressure was normal for a while off all meds this summer. When I do accidentally eat gluten (like in Chinese food), my blood pressure goes up and I feel noticeably worse. Plus I start to swell like Violet Beauregarde in Charlie and the Chocolate Factory. In spite of my love for all things wheat (you can still hear me wandering around the house, breathing the words lustfully, “Cake… I just really want some… cake.” Or bagels. Or sausage. Or pizza. I know this is giving away certain aspects about my personality of which I am not proud, but this is the way it is.

Other highlights from the year: Firing my primary care physician who promised for a year and a half to help me when it was time to try IV drugs to combat Lyme. She bailed at the last minute, which required me to drive to Winona to get a simple PICC line inserted in my arm. Actually, my sister, Margaret, had to drive me. I was not allowed to drive for a few days after the PICC line was inserted.

I could write scads about the PICC line experience, the air bubble (embolism) I got in my shoulder exactly a week after the trip to Winona, the chilling fear about having a nurse rip the embolized PICC out (turns out it’s painless), the indescribable pain from having that same lovely nurse insert an IV line in the back of my hand (THE most painful part of my body) so I wouldn’t miss a day of treatment while waiting for a new PICC line, the agony of having to use that line twice a day for three days, my hysterical tears when I thought I’d have to get another ride to Winona to get the new PICC line, the unbelievable relief at the kindness of my home health care nurse who called the hospital next door to where I live and talked them into letting me get the PICC line there.

Even better, my nurse got me an appointment at 7:30 Monday morning, which meant that the painful, evil IV line could come out immediately. All I had to do was wheel my loaner power wheelchair across the skyway that connects my building to the hospital. It was a piece of cake, except that they sutured the pick line down to my arm… no one knows why some surgeons think that’s a good idea. (There is a much more humane way to secure the line to the skin – a very strong adhesive thinggie called a Stat Loc). Two weeks later, the stitches ripped out of my arm when the tube caught on something while I was shopping. I bled all over. My nurse had to cut the shredded sutures off, and tape up the torn skin on my arm. We went back to the beautiful Stat Loc. Lesson: Whenever you get a PICC line, do NOT let the surgeon sew it to your person.

Several months and two different IV antibiotics later, my Lyme doc suspected another coinfection – Babeosis. I tested positive. No wonder the IV drugs weren’t working the way we thought they should! Out with the PICC line. In with three months of antimalarial treatment (Babs is a close relative to Malaria). Finished that treatment a month and a half ago. At the moment, I’m six weeks into a two month liver rest, mentioned earlier.

However (there always seems to be an, “however”), now that I’m off the antibiotics, my Lyme symptoms have worsened significantly. Meaning I can’t function at all well. Pain, cognitive skills, lack of energy, you name it — every thing is worse. Heating up a can of soup for dinner is often out of the questions because I “wasted” all my energy on showering and getting dressed earlier in the day.

I’m going to start up antibiotic treatment against the Lyme again. Tomorrow, in fact. Jay is going to learn (from my new, completely cooperative primary care practitioner’s office) to give me IM (deep muscle) injections of Bicillin. I’m trying not to be freaked out by what I’ve read about the two inch needle, the pain in the muscles that can go on for days, the lumps that form in the glutes at the injection site, the horrific herxing that can happen when the drug is working.

“Don’t worry,” my Lyme doc told me, cheerfully. “Just take it slow. Make sure Jay takes a full five minutes to give you the injection and it won’t hurt at all!”

WHAT! A two inch needle stuck into my butt for FIVE FULL MINUTES? No problem. Right. I can do this. NO I CAN’T! What am I thinking! This is a huge mistake. HUGE!

Okay. Getting a grip. I have read that many, many people find this treatment to be very effective. And I only have to do it once per week.

If you don’t hear from me, it’s because I’ve passed out, and have refused to wake up until the IM treatments are over.

I’ll keep you posted. Or not.