Another Sunday morning where I find myself awakened early. Thankfully, it is not due to news of a family member's demise. No, it's due to a rambunctious dog, an aching right leg and the need for Louisiana style coffee.  Pandora is on shuffle.  A lovely clarinet concerto is playing. The trees outside my window are backlit by the rising sun, green glow all around.  I can't see the forest for the trees. I am surrounded by trees. Pine and poplar, birch and cedar.  I find trees a comfort. Sometimes when I arrive home after a particularly stressful day I will look up to the sky, tilting my head back as far as I can. I stand in place and sway with the trees. Sometimes there is a breeze, sometimes not. The swaying comforts me, calms me.  The feeling is the same as when I have swayed with my babies on my hip: I am whole. When I am with the trees I do not feel fragmented. I am back with my true self. I feel this way sometimes when I am with the ocean. My true self is calm and observant, watchful but not wary. No expectation in that moment, just the peace of being with the trees or the ocean. Sometimes my true self is present when I am with other people. As I age, I am finding that happening more and more. 

   Because we are coping with my Lyme I am making allowances for no garden this year. I will putter with containers and some flowers and herbs. The garlic was planted by Erik last fall. It will need to be checked for tasty scapes soon, but other than requiring some water, it is fairly carefree.  We will not be doing cucumbers this year. I do not see pickle making as a possibility this year.   I am disappointed that I will not be doing this thing that my family loves. Perhaps if August is better I will buy the ingredients at Farmer's Market and do a small batch. This year I am excusing myself from pickling. 

   In the meantime, I am living in the forest, drinking robust coffee and being grateful for the things I can still do. I look forward to the possibility of being healthy, no longer plagued by aches and pains, fatigue and fog. 

Blessings abound

   My brother-in-law was taken off life support today. He had been on a ventilator since a motorcycle accident left him with a massive head injury. So Erik and I are going to Maine.  I wish my sister and his family did not have to endure this. 

   Following the last post, I was planning a trip to Maine for my oldest neice's bridal shower. I had already reserved the time off from work. I thought I had planned well: An overnight stay with a friend before going to see the Lyme Whisperer would take two and one half hours off the trip to Maine. I would see my doc, travel to Scarborough, Maine and enjoy a day sitting on the beach at Pine Point, taking in the waves and the wind.  Then travel up the coast to see my family. Stay with my sister for a couple of days, see my mother in the nursing home, see a friend on the way back, staying at her home overnight and then making the four hour drive from her home to mine. i thought I was being reasonable and congratulated myself on the planning, on making a way to go on a trip that in my diminished state would be impossible otherwise: the eight hour drive to family in Maine being an undertaking that would wring every last bit of energy out of me. 

   It didn't work out. Not the way I had hoped.

  The Thursday before the trip and the visit with The Lyme Whisperer I bought a seemingly innocent piece of cheese.  It was Crottini, a goat cheese made by a local dairy. It was covered with a delicious rind, fuzzy with the wonderful organisms that helped to create it's marvelous flavor. There it was, a cone of gastronomical delight, pristine and untouched on it's shiny white wrapper. The Voice In My Head That Should Not Be Ignored said, quite clearly," You can't eat that." When The Voice did not elaborate, I tucked into the cheese. I felt a very distinctive ZING thrill through my body. For a moment I hesitated. Then, ravenous, I ate the cheese grated onto an Ezekiel tortilla with two other cheeses. 

  The next day I was achy. "Ok," I thought," I ate the wrong microbes and fed the yeast. I won't do that again." Through the day I was more hungry than I had been. I ate the food I had brought with me, eating the salted nuts on my desk that ward away hunger and hypotension.  By the time I was headed home, at five, I was starting to feel a little apart from my body. I had a bear of a headache clawing open the honeycomb of my head, and I was starting to become dizzy. I made it into the house and immediately laid down. The room was spinning, the bed spinning. I could not sit up without increasing the spinning speed of the Earth. I drank salt water, thinking it to be my blood pressure. I tried a cold cloth over my eyes. I had Erik call our neighbor, an EMT and survivor of the Lyme Wars, to come and check my blood pressure. My pressure was fine. However, she determined that my blood sugar was probably very low and fed me sugar water. We worked out way through sugar water to omelet, to yogurt with jelly. I stuck an ice pack on the back of my head. By nine p.m. the headache finally abated and I could sit upright without the earth increasing it's rotation.  

 It seemed I had eaten enough microbes to cause a sudden explosion in the Yeasty Beasties in my system.  Yeast likes to have first dibs on any usable blood sugar in one's body. If one does not eat enough, the brain becomes depleted and starts to cause the symptoms cited above. The diet I am on, to reduce yeast and it's affects, consists of protein and very low carbohydrate vegetables such as cauliflower, broccoli, cabbage, lettuce. Anything that can be reduced to a simple sugar is to be avoided. Before I was diagnosed with Lyme and put on The Diet, I ate enough carbohydrates to keep my ship afloat and functioning. Take away the breads and crackers, fruit and desserts, and I start having the symptoms of low blood sugar. My liver cannot convert glycogen into blood sugar fast enough to feed the Yeast and my brain and I crash as I did last weekend.

   On Sunday, when I was still suffering lingering dizziness and fatigue, I was gently spoken to by a friend about my plan to go to Maine. His wife was my friend the EMT who had come to my assistance on Friday evening. He has weathered the storms of treatment with her when she went through The Marshall Protocol http://bacteriality.com/about-the-mp/  I don't remember exactly what he said to me, because my brain doesn't retain verbatim as it used to, but it was to the effect that I was undertaking what can be a grueling treatment process and I was doing it while working and I needed to rest and take care of myself. His words were quiet, affecting and penetrated my denial. 

  I cancelled my trip. I fought it, mentally. Eventually, I accepted it. It is probably the first of many times when I will acquiesce to the demands of my physiology as I deal with Lyme. If I were to be completely honest, I have had to acquiesce more times already than I would care to admit.  

   I have done my best to make this time at home as fun as possible. I have rested. A lot. I picked flowers with a friend. She had to help because I use two canes to manage the slope of our lawn by the frog pond where the daffodils grow. I can use the canes and carry the scissors, but I can't do that and carry the flowers, too.  It is good to have a friend who understands, but sad that she does because she, too, is dealing with Lyme and it's treatment. 

May is Lyme Awareness Month. http://www.wnd.com/2012/05/chuck-norris-defends-kids-from-crippling-disease/?cat_orig=diversions.

Blessings abound.

  I was going to write more, but I realize I need sleep more than I need to write. I'll continue the thought later. Maybe. 

Blessings abound

Today was a better day. Pain was minimal and managed with tylenol and tramadol. My energy was pretty good. It was even, no dips and dives. Grateful am I that the phone traffic in our office was manageable. I do the bulk of patient contact over the phone and Mondays can be somewhat demanding. Today it was lighter until the witching hour at four. Lighter meant easier on my hands.  Another good sign today was an easing of brain fog. I was able to talk without garbling my words and think clearly when composing my documentation in the Electronic Medical Record. 

I was able to come home and make my own supper and do the dishes. Tomorrow's lunch is tonight's leftover haddock and green beans. Cooking enough at one time for two meals cuts down on the wear and tear on the cook. I have taken chicken thighs out to thaw for tomorrow night's dinner. 

And now I am pooped. 

I wanted add that I also had a pleasurable drive home. The spring tires are on once more, the studs of winter no longer grinding the pavement where no ice or snow exist. A new tie-rod and alignment have my Snaab once more a smooth pleasure to drive. i felt peaceful. I was able to notice the pinks of creeping phlox on the dairy farm lawn along Route 7.  As I drove, I could pick out the harmonies of the music to which I listened without the horrid hum of snow tires eroding my senses. Beautiful crab apple trees in shades of pink and white were blossoming today and I had the energy to take them in and appreciate their beauty. When my energy is not contracted with pain or fatigue or sometimes both, I am able to appreciate the world around me. 

Blessings abound

This is not my work, but was shared with me by a friend who has dealt successfully with Chronic Lyme Disease. You might find it interesting.http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

blessings abound

My best friend in a contemplative mood.

Thankfully, the headache of Wednesday's post has abated. Thursday and Friday were pretty good until some things happened at work that kept me there an extra hour and resulted in a major melt down upon returning home. God love my husband, I don't know where he finds the patience to deal with me when I am being an emotional train wreck. At one point I sobbed to him," I don't want you to end up being like my father, wanting to shoot me and then turn the gun on yourself!"  He replied," I've never wanted to shoot you and I've certainly never wanted to shoot myself! I just want you to get better so you are like you were when we first were together!"

He held me and stroked my hair and calmed me. I am so blessed to have him as my partner.

So today I had a delicious two hour nap. The sun is reflecting off the birches and pines on the ridge beside the house. The trees are bare of leaves that would obscure one's view of the mountain in the distance. At this moment, I do not know it's name. I know it, but I cannot recall it. I'm told this is part of Lyme brain. One more piece of information lost to me in the moment.

Once I'm over this hump with the final Nystatin boost, I will have a couple of weeks before I start the antibiotic regimen. I will go to Maine and spend some time at Pine Point before heading up the coast to see my sister and join in my oldest neice's bridal shower.  For now, I'm taking it one day at a time. Blessings abound.

I have the mother of all headaches, starting from my mid-back and rising into my shoulders. And then piercing my head, encircling my jaw. My eyes burn, my skin burns and a more sensible woman would lie down and be quiet, I suppose. When I lie down I feel it more fully than if I am distracting myself. I'm waiting for the relief the ice pack will bring, but for now it is in the freezer "re-charging." Today is the third full day of my most recent increase in the yeast medication. I am almost up to the full dose. Yesterday my right arm hurt, but I felt alert and ok except for the pain in my arm. This morning I awoke with the headache. I've used coffee, tylenol, water, ice pack. I finally broke down and took a pain pill left over from my back surgery.  It has helped some, but not the way an Aleve or 600 mg of ibuprofen would.  I can't take the NSAIDS because they would upset my stomach and,"undo the good we've already accomplished " according to The Lyme Whisperer.

MotherPusBucket but it hurts.

I'm thinking that if I rub myself in chest and neck with China Gel that it might help. I need a tub full of the stuff rubbed into my body.  On top of everything else, I am feeling nauseated. The good news is I have been able to schedule my increases so that the worst of the side effects occur on my days off and weekends. Probably the best way to keep me on my four day a week work schedule while undergoing treatment. I see Lyme Whisperer in two weeks and then I anticipate I'll be starting the first of the antibiotics. Before I start the antibioitics, though, I am going to Maine. My sister is throwing a bridal shower for my oldest neice. I want to be able to participate and I like spending time with my sister. I don't want Lyme side effects to interfere. I'm planning on spending a night in Scarborough and walk the beach at Pine Point. Nice half way mark for resting. The beach there does me so much good.

Not a beach picture, but something that makes me feel good.

Blessings abound

  One of the side effects of Lyme is what my friend's call Lyme Brain. I have tried to avoid acknowledging it's presence, but this funky moments of not remembering something and then having it affirmed that I'd known this for years had been occurring for years under the diagnosis of Fibromyalgia. They were becoming more frequent and were one of the reasons I sought the expertise of The Lyme Whisperer before I knew him to be The Lyme Whisperer. When he was an unassuming, run of the mill physiatrist. Today I was outdoors, where the plants are thrusting thru the warming earth.  I saw a ring of flat upright leaves and asked Erik what we planted there. He said it's the irises that have been there for years. 

   I did not remember that. But I know he is right. I did, however, remember planting the Bleeding Heart roots from friend Marcy. And they are pushing through, reddish bronze in color, leaves delicately folded into a pointed fan. They are next to the Dutchman's Breeches and they are some of my favorite flowers. 

 Blessings abound

   I'm in the process of titrating up to the full dose of Nystatin tablets the Lyme Whisperer has prescribed. I'm experiencing symptoms I'm told are the result of the die-off of these little micro-organisms in my system. I've been timing the increases so the worst of the symptoms are apparent during my weekend off. I'm emotionally labile. Two Friday nights in a row I have come home and cried because of little things: no seltzer to drink, not hearing from my younger son for a few weeks. Not big things, but not things I can seem to surmount when I am fatigued and hurting. 

   The Lyme Whisperer has told me to bump up when I'm feeling better after the initial increase in symptoms from the increase. I had a pretty good day yesterday, but I had CPR in the evening for recertification and there had been a bit of chaos at work. Today I am hurting and tired. But I made it to the pool and exercised for half an hour.  I've debated bumping up tonight but have decided to wait and see how I feel tomorrow. I'd like to be up to the two tablets four times a day that I'm aiming for by my next visit. I just am not the most adept at assessing how I am. 

   I spoke with my PCP (Primary Care Provider) about this new diagnosis and his opinion. We had an articulate conversation and he encouraged me to try it. He doesn't see anything dangerous in what is proposed. I was encouraged by his concern and heartened when he said," I'd like to see you better." We discussed the lack of scientific "proof" around Chronic Lyme Disease. But mostly we talked about how there is nothing else to try, that I don't fit any other diagnostic algorhythm, and it doesn't look as if it could hurt. 

Just in my hands, arms, and the rest of me. But my hands and arms are the worst.

blessings abound