week 1

I'm not going to lie. It's been a rough week. The first day was effortless... but when we added in azithromycin to the antibiotic mix, my tummy went south again. Still could be herxing... because honestly, I'm having plenty of that. I've been revisited by every symptom I've ever had this week, but so far it's manageable. Muscle cramping has been mild, burny skin hasn't been too bad... the worst things are the fuzzy head that makes it really hard to think straight, the fatigue, and weakness in my hands and a sore neck, which has kept me off of the computer for the most part.... (which is good, because I needed to take a step back from all of the devastating world events this week). I kind of feel like I have a moderate flu... achey all over, tired, a bit nauseous... not too bad, but not great either. Also, my emotions are blatantly right on the surface, so it's kind of like a perpetual pms. Fun! What makes it all tolerable is knowing the little lyme monsters are dying off.... which sounds vicious even to me. Reminds me of a yoga teacher I once had.... she'd swat at mosquitos and flies that would make their way into our classroom, and in such a sweet way would whisper, "Be free! Be free!".... so yeah. Be free, lymies, be free! (I'm starting this blog today, and that will be the name!!!). I find the most challenging part is giving this process SO.MUCH.ENERGY. There's really not much room for spontaneity. The timing of the antibiotics and the supplements and the probiotics has to be precise-- otherwise they all mingle and make one another less effective. I have timers/reminders on my phone for everything, as every couple of hours, there's something I have to take. Also, I have to constantly listen in on what my body needs... which sometimes means detox baths or naps in the middle of the day, at the risk of having no energy for school pick-up... it sometimes means gentle yoga and stretching when I'm feeling all tensed up... it sometimes means short walks to get the ya-yas out... it sometimes means staying off of the computer and doing artwork or reading a book instead. What's crazy is that these are needs we should all be able to honor, but after years of creating and growing my own business, it's so hammered into me that I must do, do, do... that even with something like this, I have to have something to show for it. Oy! Due to the tummy troubles, I was planning to go in to the lab and be tested for C Diff this morning, but my digestion has improved just enough that it would make the test not do-able. So that's good news in that it's likely NOT my problem! Began 2 days of Flagyl today, which will help in killing off any lyme cysts (when the antibiotics begin, often the lyme will freak out and create cysts in the body to hide out in), and we may take the azithromycin out of tomorrow's antibiotic doses... I will also go in for safety labs tomorrow morning. And then it will be the weekend, and for two days, I can hopefully pretend to be normal again. ;) Next week will be similar to this week, and then the week after, I'll be able to take a week off of treatment before beginning round 2. So there you have it. I'm about to head off for a short and sweet walk around the lake...

beginning again

It's official! I'm starting treatment again on Monday. There will be a few tweaks starting out.... smaller doses at first, and we're trading out one of the medications for a different one less likely to cause digestive issues. So I'm working on getting myself back into that mode again. Thankfully, my tummy has continued to respond well to the new probiotics, and after the trials and tribulations following the last attempt to start treatment, I'm feeling geared up and much more confident (of course, Monday morning may be an entirely different story!). We think that the Flagyl I was taking for potential C Diff may have knocked out some Lyme cysts, and between that and a Meyer's Cocktail IV last week (an infusion of high doses of magnesium, calcium, and B vitamins) and getting out for more walks with the warmer weather, and taking a yoga for chronic pain class, I have been feeling pretty good. While I certainly do have intensely challenging days, it's all relative, and I am happy to share that I've noticed several of my symptoms greatly reduced. I don't really know what to expect next week as far as herxing goes, but I have been putting several daily detoxing rituals in place, so I'm hoping it will be manageable. The uncertainty of what's to come is not (atleast in THIS moment) worrying me..... (knock on wood!).

pariprashna

I had an appointment yesterday with Anne.... and once again, I was reminded how much of a spiritual journey this really is... learning to trust, be present, to know that ultimately all is well, even when I feel like in some ways I'm falling apart. I find that these appointments both completely overwhelm me and nourish me.... it's so comforting to sit down and explain what's going on to someone who is truly interested and is so very compassionate, who has been there herself and knows how this disease can wear us down to mere pebbles at times... and frankly, there aren't too many docs out there who will allow you to weep like a baby if you need to, and who will recommend some time with gorillas for healing. And yet, these appointments also offer me glimpses of what lies ahead, with rarely any answers... just more and more questions. In the yoga world, they call that "pariprashna".... a Sanskrit word meaning "unceasing quest and unfolding perspectives." There simply is no fancy finish line when (we think) we have all the answers... because one inquiry leads to yet another and so on. One can think of this as an exciting adventure in never-ending expansion, yes.... and that is the goal in its spiritual sense.... but gosh, this human I am somedays feels like it's a never-ending, nausea-inducing amusement park ride instead! So all in all, we need to figure out this tummy stuff that's been aggravating me for weeks now. The big question is, could it be the lyme itself causing these issues in my gut (this is fairly common for many folks, even though it's fairly new for me).... or is it c diff, which we have not yet been able to test for (it can be risky/dangerous to assume it's not without further testing)? To help us decipher which it is, I have an appointment with a gastro doc on Friday, and they might recommend a scope. Ugh! In the meantime, I'm boosting with some really heavy duty (and very expensive) probiotics, and by golly, they seem to be doing the trick (KNOCK ON WOOD). And if that's the case, they are worth every penny! Keeping my appointment though with the gastro, in hopes that I get to sit there and tell them it's been resolved. If I continue on the upswing, the plan is to restart treatment in two weeks... as long as my tummy is completely normal by then. At that point, after some tweaking in the antibiotic regime, if my body can't handle it and my stomach gets unhappy again, we will start talking about herbal protocols. There will always be other things to try..... I went to the first of a four-part series led by my friend Valerie on yoga for chronic pain last night.... and I can't tell you just how much that time eased things for me.... in my body, yes, but even moreso, in my heart. I had left yesterday's appointment feeling so defeated, so tired of all of it... so tired of fighting.... so tired of people saying to me, "but you look great!".... so tired of trying to figure things out.... so tired of the arm cramps and the swollen, painful toes and ankles, and the digestive crap and the stress of everything. My sweetie took the rest of the day off of work, and honestly, I didn't realize just how much I really needed her to do that... I did a fair amount of crying! When it was time to go to yoga, I was sorely tempted not to go. But I did. And to be around others who share similar challenges was a godsend. And being led back to my body in such a gentle, thoughtful way (when hours before, I just wanted to disown it), was just such a relief. It wasn't easy mind you. A couple of years ago, I could've done everything we did in my sleep without any trouble at all... but for this body in its current expression, it was rather tough, and I hadn't expected that. But even so, it still felt like I was being gifted something very special. And so I went with it. And I think it restored something in me mentally and soulfully. This morning, I sat and had a Meyers Cocktail drip in the IV suite that has become so familiar to me.... it's given me some energy today, which is so needed, as this is a huge driving day back and forth and back and forth to Asheville, and the heavy rain is just not fun to navigate. Only one more trip in a few minutes to get Zoe from school, and then we'll finally be able to settle in for the rest of the day. Thank goodness!

what will inspire happiness in me today?

We had a lovely vacation on Bald Head Island over spring break.... it was physically challenging in many ways, and the first day, it was like I was stuck in the middle of a nasty reality check, as the very steep stairs in our rental house became my arch nemesis, and our first long walks on the beach were anything but peaceful. But eventually, I found my old stubborn Taurus-y ways, and realized just how lucky I was to be there... the thing that helped the most was that we were visited by a pod a dolphins that came unbelievably close to shore, and were very curious about us. Some of you may know that I've done two open-ocean swims with wild dolphins, and they were so very life-changing... so the mere sight of these creatures automatically puts me in tears. It was very chilly outside-- upper 40s, lower 50s... and so of course, it was pretty unrealistic to dive in.... but at one point, Deena grabbed everything out of my arms and yelled, "Get in there!" Mind you, I was fully clothed, with my favorite pair of Merrills on.... but I waded in anyway, and the dolphins came even closer.... at one point, they were only 7-8 feet away from me. In that moment, I forgot about the frigid temperature of the water, the pain in my legs, the reality that my shoes were probably ruined.... and soon, the rest of the family joined me.... and we were all talking to the dolphins as if we'd been reunited with long lost friends! The walk back to the house was kinda sorta miserable, but SO worth it. No one wound up with hypothermia, and at that point, I felt like I could tackle just about anything. Perhaps the dolphins shared some of their healing magic, or perhaps I was able to see myself as I know my spirit truly exists..... wild and spontaneous, free and unstoppable. A couple of days later, we went kayaking in the salt marsh. I knew this would be a lot for me going in, and our guides warned us that it would be even more difficult than usual because of the wind... so they were prepared to tow me if need be. But with Zoe in the front and me in the back, we somehow were able to pull off TWO WHOLE HOURS of paddling! And it was amazing. A couple of times I had some pretty intense arm cramps, and I thought, shit, this is it.... but I took us getting caught up in the reeds as divine moments of rest, and was able to push through.... ;) By the end of our trip, I was pretty pooped to say the least, and the six-hour drive home in Easter weekend traffic was rather excruciating... I had been pulsing some Flagyl every few days while we were gone, and so that last night at the beach, we all piled into the giant bathtub there at our rental for a detox bath, and that seemed to have churned some things up.... but we made it home safe and sound with hearts that much fuller, and reminded (once again) that so much of healing happens not on the physical level, but on the soul/spirit level.... Being home is an adjustment. And life certainly hasn't returned to baseline (my new word for normal, since "normal" seems to always be changing!), as Noahs' been home sick. Today is my last day of pulsing the Flagyl (in hopes that this will have taken care of any remaining C Diff spores), and I go in to see Anne next week to re-evaluate things and plan to restart treatment hopefully. In the meantime, my tummy has been off kilter... not as bad as it was, but I have had a few pretty intense moments of nausea, which is my least favorite symptom of all time. The only thing that gets me through those moments is assuming that perhaps it's a herxing reaction as I'm killing off some of those little lyme boogers. I have also been noticing a bit more neurological stuff happening, which can certainly freak you out if you let it. I have been having a few dizzy spells, losing things left and right, and sometimes can't find the simplest words. Again, this could all be die-off from the Flagyl, or it could be a co-infection kicking in... After today, I'll be completely off of antibiotics for a week, and that should be quite telling. I spent a couple of hours on the phone with a friend whose daughter was just diagnosed with Lyme... unfortunately, she's far worse off than I and will probably have to travel to get IV antibiotics (she's the same age as Zoe!), but I think it helped both my friend and I to have that opportunity to express the craziness of this disease and the medical community's response to it. Support around this is truly hard to find. There are lyme support groups online that I have tuned into, but I seem to only be able to take it in spurts-- otherwise, it just disheartens me... and there's really not enough known about this disease, and so there are a bazillion different treatment protocols (both herbal and antibiotic) that folks feel quite strongly about, which makes my tired brain even more confused! Next month is lyme awareness month... and so I've decided to host a showing of "Under Our Skin" for our local friends here at our house. I've heard that the ticks are already out and about in Virginia.... and so I'm sure we're close to tick season here as well. My hope is to help others educate themselves about Lyme, as it is truly becoming quite a powerful epidemic... AND while it's tricky, there are things we can do to lessen our risk. All in all, vacation helped me to "take a break" from all of this... which I'm truly grateful for. Now I'm ready to step into my own healing on a different level.... it used to be that my guiding question for the day was, "what is the most loving thing I can do for myself today?".... and I loved that, but vacation made me realize just how much joy I was passing by.... I have been so worried and bound up in shooting for SUCCESS in healing, SUCCESS in my work, SUCCESS in mothering, SUCCESS in writing a book or completing a painting, SUCCESS in getting through the day, even-- that I have lost sight of the joy! Logistically, I was doing all the "right" things, eating all the right foods, taking all the right supplements, trying to fit in mandatory creative time each day, making sure to get some quiet time-- but I haven't been truly enjoying my life. That changes NOW. My new guiding question is, "what will inspire happiness in me today?" I'm getting back to journaling... painting and writing when I feel called to paint and write, instead of when I SHOULD paint or write... allowing myself to eat ice cream every now and then... making dates with friends... listening to guided meditations while getting my magnesium IV treatments... taking longer (even if slower) walks in the sunshine... and I am hoping to participate in a four-part Yoga for Chronic Pain series that my friend Valerie is holding, starting next week...