I Love This

Made me feel happy.

“5 Years Time” by Noah and the Whale.


Herxing

My last IM Bicillin shot was last Saturday. It was more painful than usual, even though Jay was very careful and we did everything right. Hot bath and heating pad afterward, everything.

Sunday morning I woke up at 5:30 AM (had to use the loo), but I couldn’t walk. My right hip, the one that didn’t get the injection, was in so much pain I could not move or put weight on it. The left hip hurt like holy hell from the injection, but at least I could put weight on it. I really didn’t want to wake Jay (he already does so much for me), so I rolled slowly out of bed, and took about five minutes to get myself to a standing position.

It took me another five minutes to lurch 15 feet to the bathroom, gripping the bed frame, walls, door frames — anything to keep from falling. Getting back was not any easier, but I did it with lots of loud gasps. Before I went back to bed, I put a Lidocaine patch on the right hip in hopes this relatively new painkiller would help.

(Although I have some for emergencies, my doc is discouraging me from using narcotics for pain because they interfere with what the antibiotics are doing. Something about hindering recovery of the mitochondria, but I glazed and couldn’t understand what she told me.)

The round trip took a record 30 minutes. Although I prefer to sleep on my sides, it was out of the question since both hips were in agony. Miraculously, I slept for two more hours (on my back). I had two dreams. In both, I was in my wheelchair. That’s a first.

My right hip was a bit better when I finally got up, but if I had to move, I was lurching, yelping and gasping. Not surprisingly, I spent most of it on the couch. Doing so, I managed to avoid narcotics, hoping it was just a one-day Herx.*

It wasn’t.

But everything got a little better a little at a time, although my right knee, shoulder, neck, and hands also caused pain for portions of the day. By Sunday, I was able to run errands (Jay had to drive), although I was still lurching.

Today I am better again, and my right hip pain is much reduced. Which is good, because I am due for another injection tomorrow.

My doc tells me the Herxes should get shorter and shorter. Hope so. We’ll see. I’ll keep you posted.

*Herx is short for Jarisch-Herxheimer reaction, …”an increase in the symptoms of a spirochetal disease (as syphilis, Lyme disease, or relapsing fever) occurring in some persons when treatment with spirocheticidal drugs is started.” Merriam Webster’s Medical Dictionary. The common understanding is the increase in symptoms is due to bacteria die-off, which cause toxins that make you feel worse before you get better. I have a bad feeling a Herx is the damned bacteria fighting back, but that sounds like a really bad horror movie plot, doesn’t it?

Statistics

New diagnoses expected in 2007:

  • HIV – 60,000*
  • Invasive breast cancer – 178,480**
  • Non-invasive breast cancer – 62,030**
  • Lyme Disease – 250,000 (CDC conservative estimate)***
  • Lyme Disease – 2,500,000 (Research estimate)***

*http://www.washingtonpost.com/wp-dyn/content/article/2007/11/30/AR2007113002535_pf.html
**http://www.cancer.org/docroot/STT/content/STT_1x_Breast_Cancer_Facts__Figures_2007-2008.asp
***http://www.openeyepictures.com/underourskin/uos_background.html

A Holiday Miracle!

The conservative newspaper, the St. Paul Pioneer Press, has posted a great video about the holiday drag show at one of my favorite gay bars in the Twin Cities. Jingle Bells for everyone!

1/7/08 Note: I finally figured out how to link directly to this video – please let me know if it breaks or doesn’t work. Thanks!

The Life of Reilly

Despite the bleak picture of my life I write here, I do get out once in a while. Last Saturday, for instance, Jay and I went to see “The Life of Reilly,” the incredible documentary of Charles Nelson Reilly’s one-man show.

It is brilliant. Worth every award it wins. Well written, amazingly filmed, beautifully performed by a brilliant actor.

Check out the very fun website for clips and show times. Support independent film!

PS: Charles died on May 25, 2007 at age 76. He was survived by partner of 27 years, Patrick Hughes. Read his NY Times obituary here.

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.

Bad, Not So Bad

My Lyme doc called me Tuesday to let me know that my recent blood tests for Lyme and other tick borne disease (TBDs) may have set a new record for positivity. She’s sending me copies, which I’m anxious as all get-out to see. I mean, anxious as in obsessed. Anxious as in I won’t be able to stop staring at them and studying them for at least a week after I get them.

Which makes no sense, logically. As my doc said on the phone, these results tell me three things:

  1. They explain why I feel so very, extremely bad (I’m really, really sick).
  2. They tell me that my immune system is trying to work (the tests measure antibodies).
  3. They tell me that I do, in fact, have Erlichiosis (another TBD I suspected I had, but tested negative for last year).

Even though I know that’s all I’m gonna find on the sheets of paper I’ll get in the mail, I won’t be able to stop myself. I’ll take them apart line by line. Ask my Lyme expert friends on my favorite Lyme message boards what they they think. I will do this because, well, because there’s so little else I can do. And I suppose just in case there’s a new clue to be found about… what?

But these results won’t tell me when I got sick or why. They won’t tell me any more than the three points above. Even so, I guarantee you I’ll study every number until I know what it means. And then I’ll forget most of it because my short-term memory is so seriously impaired. (No, not like your usual, “I forgot where I put the keys” impaired. More like “I’ve-had-a massive-brain-injury” impaired.)

Back to Tuesday night. After delivering the test result news, my doc decided that I need two IM Bicillin injections per week, not one.

So, last night Jay gave his very first shot to me. I didn’t want to say anything to make Jay nervous, so I didn’t tell him I was terrified. I pulled out all my old acting technique and tried (with only moderate success I fear) to appear perfectly calm. Jay may have been nervous, but he didn’t show it. His calm made me actually start to FEEL calm.

And we did everything right: I relaxed on the bed, toes turned in and wiggling (relaxes the glutes). Jay did a very gentle pinch and stick. He aspirated (no blood). Then slowly, very slowly, he pressed the plunger full of medicine into my right glute.

I winced a very few times. He slowed down even more. He spent the whole time telling me what a great job I was doing, sounding confident and soothing at the same time.

Before I knew it, he was done — I had hardly felt a thing! I had a steaming hot bath waiting (recommended by my doc) in which I soaked for 10-15 minutes. I dried, got into snuggly jammies, and wrapped an infrared heating pad around my insulted bun. Then proceeded to watch bad TV until we went to bed (also with the infrared heating pad).

Today I was able to walk to the bus and travel to have coffee with some writing buddies. I was pretty wiped out when I got home, but I couldn’t have done this last week, after the clueless tech gave me my first shot.

My bun is still sore, but so, so much better than last week. Jay is a genius. I am very lucky.

Ow.

I am sure that the clinical tech who showed Jay how to give me the IM Bicillin shot yesterday is a fine person. She has a lovely personality, and was cute as the dickens. And I’m sure her skills with needles are renowned and considerable.

But when I asked her about numbing the area first, she said, “Yeah, some people like to use ice sometimes.” She kept her eyes on the pre-filled syringe I brought from the pharmacy as she took it out of it’s box.

What about aspirating with the needle, I asked, to make sure we’re not shooting it into a blood vessel (important step, I’ve read)? She breezed, “Oh, no. Not for this.”

Well, what about injecting the medicine slowly, like over five full minutes as my doctor suggested, so that it causes me less pain? What about lying down to relax the muscle. “Oh well, you can rub it afterwards. It’s just a little sting. Okay,” she said, turning to Jay. “You’re going to need gauze and a bandaid.”

The rest runs together. I remember a vague discussion about how Jay needed to divide each bun into quadrants. I felt like a side of beef. Their discussion was punctuated (sorry) by a really sharp stabbing pain in my left buttock. I yelled, but tried not to jump, figuring that could make things seriously worse. I stood still as our tech continued talking to Jay. Deep, throbbing pain occupied my brain fairly completely as she shot the medication into me like a jackhammer.

I didn’t faint. In fact, after I stopped yelling, I tried to act nonchalent, pulling up my drawers and trying to chime in insightfully that why, yes, we did have a sharps container. Disposing of needles is no problem.

Already I could barely walk, and it’s been like that since then. Heat has helped sitting and moving around has helped. But my upper left bun is like a huge bruise that kills when I move it.

And I’m completely fatigued. Way more than usual. I fell asleep on the couch this afternoon, barely noticed when Jay came home.

Bottom line (no pun intended), I will survive. No side effects. No allergic reaction. I’m going to have trouble walking, sitting, standing, etc. for a while (I have to get another shot every week, then twice a week at some point). But I think I’ll survive.

And perhaps Jay will be wiling to try some of the techniques I suggested to the tech today. I’d better start being nicer to him

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.

%d bloggers like this: