Oh Internet and readers, can you ever forgive me? I never write, I never post pictures. I could be dead in a ditch for all you know. But I have a reasonable excuse. As you know, last month I had a relapse and decided to do a 3 week course of IV antibiotics (Invanz for those who are wondering) targeting one specific pathogen that seems to be hanging on. It basically threw me under the bus. I walked around looking like a drunkard most of the time.
The first two weeks I was able to practice yoga lightly but by the third week, I gave up. The fatigue was so debilitating. I even went black on social media. Even Mr. Wild Dingo used the words, “You look tortured,” and he’s definitely not one to coddle me. It took a the fourth week (off the IV) to detox it all and get back to my regular not-in-agony-but-still-not-well self. And that’s why there have been no silly stories or photos. Now I’m off IV and sadly back on oral antibiotics to try to get on top of this pathogen and knock it down like we did the others. I get to look 12 months (as opposed to 9) pregnant because that’s what antibiotics do to the body.
The CDC positions Lyme patients as junkies who simply want antibiotics to cure a sniffle when the reality is, nobody in their right mind would choose this hell that long term antibiotics put you through. And yet, they really are making a difference.
It may not look like it to the outsider, but I truly am getting better. Even Mr. Wild Dingo will look at me and say, “You’re not getting better. You were healthier in Switzerland.” But here’s the thing, and any Lyme patient and any Lyme doctor will agree: the treatment is worse than the disease. It’s easier to live with the disease than it is to treat it. HOWEVER that doesn’t make it the right choice, simply because as the disease progresses, quality of life gets so diminished. No matter what treatment choice, antibiotics, herbal methods, BVT (Bee Venom Therapy), etc., part of any Lyme disease treatment involves killing pathogens at a ridiculously higher level than your body can eliminate and so it becomes hard, even dangerously hard. I say this because if patients try to go too much too soon a patient can literally have a fatal Herxhiemer reaction. So it always seems that the patient is NOT getting better especially when on a killing spree part of the cycle.
FOXNY did a fantastic interview with Dr. Neil Spector, brilliant Duke oncologist who almost died of Lyme carditis and wrote a book about his Lyme disease journey, “Gone in a Heartbeat.” For years they misdiagnosed him as stressed as his heart was failing for no reason at young age. He had been a fit marathoner who became so debilitated he couldn’t walk 20 yards. Eventually he had a pacemaker for his heart before they found Lyme disease and treated it. The damage was permanent to his heart though and later he had a heart transplant. As an oncologist who researches cancer and treats cancer patients he agrees that Lyme disease treatment is so much like chemotherapy and possibly harder than chemotherapy on the patient. Check out all the excellent FOXNY interviews with various Lyme experts and patients.
There are 13 interviews on that playlist. Teresa Priolo of FOXNY did an excellent full coverage of the Lyme disease controversy. But here below is her interview Dr. Neil Spector. It’s eye-opening and I encourage you to watch it!
So though a relapse may seem like I’m not better, I can tell you that things are different and better. I no longer have light or sound sensitivity. I don’t have song iteration. I no longer have ticks, tremors, shakes, air hunger/breathing issues or heart palpitations. I still struggle with migraines, headaches, cognition, light insomnia (although sleep is 80% better), fatigue and joint pain. The best I can explain my recovery level is that I feel much “lighter” as if more weight has been lifted off of my shoulders each time I’ve gone through a killing spree. Though I feel run-down and exhausted, there’s a part of me that feels less burdened, freer and much more like myself.
The life cycle of the pathogens take their toll on victims, physically, mentally, cognitively and emotionally. When the pathogens are being naughty, I get “the hates.” Yes, I basically hate everything, such as, where I live, shopping, people, driving, walking, even things I enjoy like cooking, gardening or yoga practice. When you’re at this level of sickness you go to a place where you are devoid of emotion and unattached to anything. It’s a real symptom labled depersonalization/derealization and Lymies often suffer from this. The pain levels get so high, the Lyme patient must disconnect from everything in order to simply survive. That’s the easiest way to put it. There’s just no room and no energy for anything including the people, activities and things we used to love. When I get through the other side of a killing spree, like recently, I feel more like myself, a little bit happier and certainly not hateful.
So onto a happier note, after 7 years of living here (3 in another country, let’s be fair), we finally installed our landscaping. It took a year to design and I frankly don’t know how I managed to do that while in the worst part of my Lyme treatment, but I did. I remember one day laying on the sofa, in a severe Herx from IV Rochephin and a serious case of the hates, yelling at poor Mr. Wild Dingo who had tried to talk to me about landscape design decisions.
“You don’t understand! I. Don’t. Care. About. Anything!” I was having a real depersonalization moment. I didn’t care if I lived or died and I certainly didn’t give a rat’s ass about landscaping design. And yet here we are. I’m really happy with how it came out.
As much as I love our home, I’m not sure I will ever choose to live in another Victorian again, simply because of the amount of detail required to pull it off. It’s hard enough when healthy, and impossible when you’re sick to design, develop and implement the detail that goes into creating a Victorian home and garden. A Victorian garden really needs to fit the home and that means lots of variety of plants and a neat/buttoned up tidy look versus a casual mountain design. The view above is from the side of the front lawn and logging road. We still have a bunch of bare spots where plants died and need replacing. We had to keep the gravel logging road to our trail system in back of the home because we may use it to log redwoods or even ugly tan-oak trees for firewood. There’s a fire pit with our fun purple rocking chairs, and in the round center patio will be a teak dining table for out door dining. Behind that is the vegetable beds and fountain. I’ll share more on those later. There are two huge pots of honeysuckle that will grow up and over the pergola. All the plants are rather small right now. There are varieties of lantana, verbana, boxwood, myrtle, aeonum, tepian, African daisy, deer grass, flax, artemsia, lavender, sage and catmint.
There are three (very young) magnolia trees. I also have amaranths, jasmine, vinca, lilies, lilacs, ferns, sweet olive trees, azaleas and so much more not in this photo. I recently found a gorgeous new species of lambs ear called bello grigio (white lambs ear) and bought it. I have to admit, I’m becoming a bit OCD about nurseries, plants and garden decorations.
In the back of the house, it’s a very steep grade so we used it for an tiered orchard. We kept the the landscaping less pristine and more relaxed with natural stone. Way at the top, close to the house we have 6 blueberry bushes and a strawberry patch. There’s a ton of lantana, myoporum, and ceonothus to fill out in between the paths once they grown in.
The nectarine tree came to us looking shabby but it was the first to bloom. In addition we have 2 plums, 1 apple, 1 pear, a lemon and an orange. Juno has taken up the sport of harvesting apples and plumbs early by picking them off the tree and playing with them! It’s a good thing we have safe dog fruit planted. Now she needs to get back to work hunting moles, which are burdening one of our flower beds.
I’m so happy we were able to make use of the steep slope into walk-able areas rather than just planting for aesthetics. It’s just nice to be able to stroll around more of the grounds and take in different views. I have so many ideas to keep going in the back and in the dog yard but Mr. Wild Dingo is keeping me on a tight leash. He says he’s not made of money. So I told him, we could plant a money tree and that would fund our next phase. He wasn’t impressed. But it did remind him that our property is zoned for logging red wood, of which we have so much that really do need to be logged to maintain the health of the forest. We have trees fall regularly because of erosion and ugly tan oaks competing for sun and water. I’m always devastated when it’s a redwood. So that may very well be our next phase of development.
Poor Mr. Wild Dingo. I’m already making plans for money he hasn’t earned yet.