“I know what Lyme has done to you and how narrowly you have survived thus far.”

I read an essay today that made me feel normal — and even slightly hopeful — for the first time in years (it’s been a really hard few years).

It’s a little long, but beautifully written as an exercise by Lyme survivor Jennifer Crystal in the style of the great James Baldwin, so worth the extra few minutes. I found it powerful to read it aloud.

If you are chronically ill with Tick Borne Illnesses or know someone who is, I’m putting this on your Must Read List:

“Letter to a Lyme patient, written in the style of a famous essay by James Baldwin.”

(From the lymedisease.org blog: Touched By Lyme.)

August Blues

I’ve been waiting for things to take a wonderful turn for the better so I can report something lovely. Hasn’t happened, so here’s the boring, difficult truth.

The June uterectomy/ooferectomy surgery was a success (seems I had debilitating endometriosis), and I still have one healthy ovary intact. Also survived a July, fully of birthdays and anniversaries with my soon-to-be-ex-spouse (we had a good time together).

But now I am slogging through August trying to continue to recover from surgery while adjusting to new Lyme meds, restarting physical therapy and non-aerobic walking while finishing legal paperwork for the divorce and taxes.

It is all hard, all painful, and from day-to-day seems overwhelming if not downright impossible. I am better in some ways, but am so extremely fatigued that I have the energy for maybe one task per day. On a remarkable day, two. Simply scheduling an energy audit seems undoable, and I really must do it. My electric bill is off the charts — way too large for my small place. And I must also find out what has happened to my application for Medicare B. And apply for some other state services I may be eligible for now. I am still not unpacked — haven’t been strong enough. Haven’t been able to think clearly enough to organize. One of the reasons I put off the energy audit is that I’d like to have a few more things put away and have easier access to all things electric. Hasn’t happened yet.

On top of it all, I am grieving that the life I planned for is completely gone, forever. This takes far more energy that I would have guessed. Small wonder I find moving forward near impossible.

In spite of all this, I think I am a little better, post surgery, although it is nearly impossible to tell only seven weeks out what with all the fatigue. I still need pain meds, although not very much, mostly for Lyme pain. But I’m not writing (reflected in lack of blog entries) or creating any art. A very bad sign.

I read a meditation last night that asked me what gifts I would ask from the Universe to help me through this difficult time. It has never occurred to me to ask for gifts, and I found it impossible to think of anything to ask for since every good thing I have wanted seems to be taken away from me.

So, I guess if you read this, send good thoughts my way, and wish me the energy I need to do what needs to be done. That would seem like a miracle at this point.

Blessings to you all.

Surgery #3 Next Tuesday

The belly pain and nausea are not going away. Pelvic ultrasound (what a euphamism!) shows I have a cluster of cysts on my right ovary that do not look normal, and a 5-7 cm uterine fibroid off to one side. Nothing to panic over, according to all the docs I’ve been dealing with during the last year. More, really. All this has shown up on my imaging for many years.

But because the cysts look abnormal and they could be causing or contributing to my symptoms, they’ve gotta go, along with the ovary they are tangled up with. In. Whatever.

And since I’m not really using it, and the fibroid could also be involved with my symptoms, I decided to let them take my uterus out, too. The left ovary looks to be in good shape, so I will keep that and thus be able to make my own hormones, which is VERY good.

All will be done laparoscopically, which will:

1. Make for a longer surgery

2. Make for a shorter recovery time (2-4 weeks, we’ll see)

3. Add to my belly scar collection

My GYN, whom I adore, assures me this is an outpatient surgery, and that I can climb the stairs to my apartment that very afternoon. But she told me I can stay in hospital overnight if I need to.

So think of me next Tuesday. Before that, too! I have to try and unpack some more and get my place organized and stock my fridge, etc., while I am in what is now a constant state of nausea, and thankfully, only moderate belly pain.

And I hope, hope, hope that, after recovery, we’ll find out that these things were the cause of all my belly problems. Wouldn’t that be great? If not, the search continues, although my periods will not. That alone is going to be helpful!

More as it happens.

Am I Better?

When I sleep tons, and I mean 10-12 hours or more, I feel okay. As long as I do nothing. I can do some things, like walk a little, do my physical therapy (very mild) exercises, continue to unpack boxes, go shopping, cook, pay bills, write in my journal, or even work on a small volunteer project. But I must usually pick one of those things per day. Really. If I do more, I will pay.

This is especially true since the separation from my husband is not  complete, and we can’t agree, so he’s insisting we go to court, which will drag this out for at least a year. Which reminds me, I need to drive to court to make sure they get my change of address (I moved last month to a hopefully permanent apartment… moving again may kill me). I am certain the stress of this unexpected change is wearing on me.

I periodically push myself to do a large volunteer project just to test the waters, which usually wipes me out for a week or two after, depending on the demands of the project (big pushes and late nights = bad idea).

But then, I’m not being rushed to the ER every two weeks in excruciating pain like last year. That’s an improvement. I think I am physically feeling better, but only when I do nearly nothing.

So am I better? I really really don’t know.

KQED Inteview With Lyme Book Author and Movie Creator

Click this link for a beautiful interview with the people who created the groundbreaking book, Cure Unknown, and the film, Under Our Skin from KQED, San Francisco:

Lyme Disease
The tick-borne illness Lyme disease is on the rise — but many patients and their advocates say the disease is often underestimated, misdiagnosed and improperly treated. We discuss the effects of Lyme disease and the controversy surrounding its diagnosis and treatment.

Host: Dave Iverson

Guests:

  • Dr. Eugene Shapiro, professor in the department of pediatrics at the Yale University School of Medicine
  • Kris Newby, senior producer of the documentary “Under Our Skin: An Infectious Film about Microbes, Money and Medicine”
  • Pamela Weintraub, author of the book “Cure Unknown: Inside the Lyme Epidemic”

Out of comission

Sorry I’ve been off-line for so long. Have a good excuse, though. In the space of six weeks I’ve had:

  • Three trips to the Emergency Room
  • Two surgeries
  • One diagnosis of a very rare condition (Mucosal Fibrosis)

All this in addition to my lovely chronic TBI (Tick Born Illnesses). As you may have guessed, I have lots to say about the sad state of part of our health care system. More later as I get better.

Imaginal Goo

Once again, I’ve taken a long break from blogging. In the past, that’s usually meant I’ve been stomped flat by an increase in pain and misery from this mysterious illnesses. And while I have continued that dance, mostly I’ve been on a body/mind/spirit sabbatical. Literally.

I feel like I’m in a cocoon, where I’ve recently learned that the baby butterfly (larvae) literally disintegrates itself into goo before it reconstitutes into the fabulous flying creature it is meant to become. Some texts call the cocoon a “resting” stage.

That’s one way to look at it.

What’s really going on is that miraculous transformation where “imaginal disk” cells, now goo, somehow know how to metamorphasize into legs, wings, antennae, etc. in a process that is truly the stuff of dreams and mystical stories. Eventually what will chew it’s it’s way out of that “resting” cocoon is a transformed being, with colorful wings that will soar free into the sky, pollinating and laying eggs, creating more life and beauty.

I am really, really looking forward to flying. But right now, I’m goo.

It all started in February when I decided I needed to get away. By myself. After considering lots of options, including Las Vegas (the very nice woman from the travel agency’s best deal was at a Hooters Hotel… “It isn’t that bad,” she insisted. “Just last month I sent a bunch of little old ladies there and they had a blast.”), I wisely decided on a hermitage in Wisconsin, The Christine Center. I tried to get into my favorite hermitage in Minnesota, The Dwelling In The Woods, but they didn’t have a two-week opening until July.

At The Christine Center, I made that subtle shift from being in an illness process to being in a healing process. This has been a long time coming.

When I first got sick, I fought it tooth and nail. And then, I suppose you could say I went through every stage of the grieving process until I got to an unsettled kind of acceptance.

During the past five (or whatever) years, I’ve danced that fine line between making the illness my identity, and simply accepting that this is what’s happening to me in the moment. Eckhart Tolle’s book, The Power of Now, saved me from the deepest, darkest dungeons of despair too many times to count.

During this time, I’ve made it my job to explore what it means to be this sick. And to be sick with a mostly invisible illness. Unless I’m in my wheelchair, I usually look pretty good. Only Jay, my spouse, has been witness to the hours, days, sometimes weeks of agony that sometimes lands me in bed moaning and crying with pain that my “pain management methods” can’t control. 

Back to February. At The Christine Center, I worked with a healer who uses Myofascial massage. She is also an amazingly happy and successful practitioner of the law of attraction, intentionality, and manifestation. She spent part of our first healing session coaching me in the language I used when I discussed the experience of this illness.

Of course, I instantly knew what she was talking about. I have been a student – and occasional teacher – of manifestation, beliefs, affirmations, and healing. I am a Reiki Master. I’ve been trained in at least a dozen methodologies of pretty far out energy healing modalities by some wonderful teachers over the past thirty years, starting from when I was 13 years old.

But I put all of that on hold when I got sick. For two reasons: 

  1. I felt a strong inner guidance that I was supposed to fully experience this particular illness and disability for some reason that would become clear in the future. I felt practically “told” to take a break from healing, myself or others until further notice.
  2. I felt worried that I’d done something wrong in my healing practice that caused me to get sick, and that I had better investigate this possibility before I continued.

I instantly started changing the way I spoke about this illness, and I created three simple affirmations that I could sort of believe.

  • “I feel good.”
  • “I am well.”
  • “I have amazing strength and energy”

Almost immediately, I started to get an inner message that it’s time to start fully experiencing the process of healing, as opposed to the process of illness. And I started to feel better.

Since then, dozens of synchronisticly mystical things have happened, including running into some of the best teachers on the planet, sometimes by book, sometimes in person (Martha Beck, Joe Vitale, James Ray, Esther Hicks, to name a few).

I saw Martha Beck in person at a bookstore reading. Went to an amazing two-day seminar co-sponsored by Joe Vitale and Mark Ryan that featured six more incredible presenters. Watched DVDs and read books that are all teach the fine art of transformation.

I’m slowly, but surely, studying all these materials. They are helping me remember that I need to remember what I’m here for. Or at least to find my “North Star” as Martha Beck puts it. 

So, if you haven’t heard from me, or I don’t return calls or emails as quickly as I should, please keep in mind that I’m in a gooish healing and learning (re-learning) process that is taking nearly all my energy. 

Please keep in touch anyway. Thank you for your patience. And I’ll try to keep you posted more regularly. 

Exciting times. Exciting times. 

“Productive”

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.

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.

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?

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