OUTSIDE IN

                                                         OUTSIDE IN:   

Inside on an outside kind of day.  I was outside. I went out, wandered about my front, side and back yards and sat out for a bit, brushing my cat as he lolled from side to back to tummy.  But I’m bushed, so I headed back in looking for some comfort and well, something that we sometimes talk about, those of us with Lyme disease, which is a little less exposure to the larger world on a rougher day. I could use some comfy furniture outside there, and it might well entice me to spend more time outside resting. Well, I need at least one piece of deck furniture, a chaise lounge for myself. I’ve long contemplated one, maybe one of those old fashioned, really comfy looking, redwood loungers with the big, plump, brightly colored cushions. They show up sometimes on the net or Craigslist. Who is Craig, by the way? He’s done a wonderful service regardless of whether I do or don’t know him. Thanks, Craig. I’ll be seeing you, soonish.

And this brings me to the reason for this entry. I realized that if I go out only because I think I should, then I’m not helping myself much. Am I?  At just about the point where I settled in on my bed, I had one of those very rarefied moments, the kind that you know are going to bless you later on, and often, often, often. I’m exhausted. I took a shower last night (in hope of getting out to get a puppy today, which is another story, altogether), and for some reason, unknown to me, of late, these can often lead to the same kind of herx-like reaction that a detox bath can. I can’t control it, and I need to be clean, so it is what it is. There must be a reason for this reaction. Maybe in just having the water wash over me, it speeds up circulation, or washes off some of the nasty little spirochetes that linger on my skin, and makes room for more spirochetes to move through, creating a die-off. I don’t know. I don’t even much care at this point.

What I care about is the idea that the day needs to feel okay to no one other than me, and okay, well maybe my cat. It doesn’t have to match or meet anyone else’s standards or even ideas of how to spend a spring day. And folks, this is a gorgeous spring day here in Maryland. This is the kind of spring day that made poets write love poems, young men fall in love, and young women lose their heads to these same young men. It’s also the kind of day that often sends you running to the home and garden center. Or the memory of a day like this last spring may motivate you to sprint over to the garden center…but not me. Not today. And if this is what feels right to me, this utter giving in to my fatigue, then there’s a reason for that, and as someone I used to know said, sometimes trying to know these things is like trying to nail jello to a tree. Can’t be done. No point in wasting the energy even trying.

Earlier, I came upstairs and perched my sore self on my comfy bed, which is where I wanted to be. This is where the warm afternoon sunlight hits my house, and later in the year, with summer, will stream across the end of my bed. This the most comfortable place to be when this, my favorite light of the day, strikes. So, I threw the front window open, allowing the soft breeze to clear the air. There’s a lovely view front my rest spot, one of trees in flower, new growth, and some kids playing basketball, one-on-one, on their side backish yard, the soft noise of their game floating through my window and becoming part of my rest. Afternoon sunlight from a hallway window, outside of my door, with a mostly westerly exposure, streams on across my hallway, and lights the white curtains that I hung there. This is the best part of the day. When I’m at the beach, this is the part of the day where the Atlantic ocean absolutely shimmers with the reflection of sunlight. Shells and tiny pebbles strewn on the beach, take on the warm light and the colors and shapes are brilliantly setoff against the soft creamy sand by the warm, golden glow.  And this is the part of the day when I never want to leave the beach. I want it to last forever. I feel the same way here, inside, perched on my bed today. I’ve made a nest here.

I realized something important, the idea that’s going to bless me later on, and is blessing me right at this very, as-I-sit-here-typing, moment. Now. I realized that in just accepting my own feelings, I won’t have to think about what might have been if I’d made a different choice, or fight with myself about feeling that I should be outside. So, I’m left in a state of nearly perfect peace. This means that I get to enjoy my day exactly as it is, with no regrets. No regrets now, none tomorrow, and none at any point if I happen to glance back some sweaty, sultry moment during the oppressive heat and humidity that absolutely define mid-Atlantic life during our summers. We have the kind of summers that usually amount to, one long heavily oppressive heat wave. They descend quickly and heavily, and often leave me to long for a day like today. But I’m not going to wish to have this day back, because it’s perfect for me just as it is at this moment. And the thing is, it always was. 

Doxy(cycline) Blues

You never know when something that you share, may prove beneficial to others.


Doxycycline and the Doxy(cycline) Blues:


Every once in a while you have a BINGO moment, one of those where what you hear or read, bounces right back at you, as if it were mirror reflecting your own life or experience. Today, I read a section of a book on Lyme. BINGO!

As background, my first LLMD informed me that my case was so complex that I was going to have to proceed very slowly with all of my treatment. I arrived on her doorstep so ill that I was unable to comprehend a good deal of what she shared with me, but luckily, for that meeting, I wasn't alone. Anyway, I'm keenly sensitive to most medications, have inordinately strong reactions to both those and even supplements. Anything that's not natural, is apt to cause problems for me, and even natural remedies are a challenge for me. I spend a lot or most of my time feeling what I can only describe as toxic. Toxic from head to toe, through and through. I've never tolerated antibiotics in the dosages that are generally given in the treatment of Lyme and its coinfections. When I departed this doctor's care for another LLMD, she sent me a brief note stating basically the same thing about taking things extremely slowly and wished me luck in my care.

I need to expand my Lyme library, and have been looking at a couple of books that might be of some value to me. It's time to consider a new path in the treatment of my Lyme. As I browsed books today on Amazon, I found an interesting bit of information concerning treatment of Lyme and coinfections. It concerns the use of doxycyline and one physician's viewpoint (amongst a compilation of valuable viewpoints by other Lyme practitioners), gathered from his Lyme practice. This concerned the complications that may arise from the use of doxycycline to treat Lyme. Interestingly, women were found to be more prone to these complications than men, but anyone whose body is overwhelmed with a number of coinfections tends to have similar difficulties in handling doxycyline. The excerpt below, sounds exactly like me. I wonder if any others will see themselves in this...

From the book, Insights Into Lyme Disease Treatment: 14 Lyme Literate Health Care Practitioners Share Their Healing Strategies. This quote from, Steven Harris, M.D.

"It can also be diffcult to treat patients if they have a lot of co-infections, such as Bartonella, Mycoplasma, Babesia and Ehrlichia, or if they are quite ill with predominant symptoms of one or two of these co-infections. Such patients tend to get very strong reactions to treatment, which means that I can't hit their infections as directly as I would like, as they will get too sick. Doxycycline, in particular, creates this type of scenario, particularly in women. So while it may be an effective medication, I don't like to use it in patients that have multiple, or severe co-infections. Many practitioners like to start with doxycyline because it's cheap and metabolized mostly in the colon (instead of the liver and kidneys), which means it's fairly easy on the organs. It also has great activity against Borrelia, Anaplasma, and Ehrlichia and is somewhat effective for treating Babesia, Barotnella, and Mycoplasma. But, I find that people just "tank" if they take doxycycline when they have a lot of co-infections."

Traditional Lyme treatment isn't successful for everybody. Some end up seeking alternative therapies  and finding success there. I think that I'm beginning to fall into the "other" category. 

Lesson No. 1

Acceptance. I'm struggling and struggling to edit the title of my  first blog. I don't want it to read "LymeDaze and Getting Started. What's writing got to do with it?" But, I can't find my way back to where I was. Lyme is like this and it's not worth more energy trying.

Instead, I want it to read:


Giving birth to myself. What's writing got to do with it?

Because in writing about my Lyme and sharing my life with others, I feel that I will begin to give birth to myself.

Occurrences such as this generally emerge from a major precipitating event, one that maybe threatens to take the person to the edge of the precipice. My edge is that I'm sitting, and waiting, knowing that without any choice on my part, and utterly helpless to do anything about it, I'm soon going to once again be living alone with Lyme. That, is a challenge.

Alone? Yes, and not only is my sometimes human companionship moving, but also my dear, cuddly, sweet dog, Buddy. He's leaving too. He isn't actually mine. Hush Hush! He thinks he is and so do I went he cuddles beside me and I reach to stroke him and feel his warmth, or when tears break through and with his worried little Cavalier face, he runs up to comfort me, sometimes licking tears away, but mostly pressing his soft, warm sweet face against mine. Can you resist this face? What a comical little character he is. Dogs are amazing beings! They know so much more about us than we will ever, in a hundred lifetimes, ever, ever know about them. After all, they watch our every move!

Lymedaze and Getting started. What's writing got to do with it?

It's going to help to know that at present I'm typing on a phone. Far from ideal. Hopefully tomorrow I'll have a new iPad in hand. Oh, and I have Lyme disease.

I've read other blogs about Lyme disease, but up until now I never saw that as an avenue for me to take. I guess I either felt that others had more to share, or maybe I didn't realize that it was okay to share my little story. I mean, what's so interesting about my life after all? Well, a lot, I think.

I've decided that it will probably help me to have a place of my own where I can share my thoughts and feeling with others. This is that place. After a lot of searching I've realized that I have to create my own space. I've tried paper journals and even journaling on a support site, but this is different. I feel as though this more connects me to the outside world. At least that's part of my hope for this journal, though I have no particular expectations about this blog.

Living with chronic Lyme disease is the biggest thing I've ever done, other than loving others in general, trying to make some small difference in the lives of others, as well as raising my lovely, accomplished daughter. But I need a place to express all the feelings that go along with this baffling, cunning, and debilitating disease. These are the kinds of feelings that often don't know they're there, or reveal themselves even to the owner, until that person starts to write and their inner workings begin to crack open just a bit, and allow the writer a glimpse of what's actually going on inside. Actually, that's always what happens when I write and I'm supposing that this is true for others. Does your writing give birth to itself, right before your eyes?

I know that I'm not alone in all of this, though of course there are times when I feel deeply alone,  When I read another Lyme blog where the writer expresses something along the lines of having a rough few days or even weeks, I feel very much alone. My Lyme isn't like that, at least not yet. I don't have a bunch of supportive friends who understand. I have one amazing friend who really works to understand more than anyone else I know. I also know that my daughter does a lot more to try to understand and help than I will ever know. Sometimes the best help comes very quietly packaged.

But, I have this disease that had taken my life, as I once knew it, from me and landed me here tonight, awake, exhausted, and in a lot of pain. I took an Epsom salt bath and I suspect that the water was too hot and landed me here, flat on my back, thumbs popping away on a keyboard that isn't real and wondering where I go from here.

That's my start, for better or for worse. I hope to not only explore my own world, but to look into others and in the process help both myself and the friends that I've yet to meet.

Oh, and I'm about to be living alone again and I definitely need a dog. (Shhh! don't tell my cat, but I really do!)