I first met Ray through one of my clients in my massage and meningeal care practice. He was big and muscular.  He had heard from his friend that I was very good at deep tissue work.  He was about six feet tall.  Brawny would describe his build most accurately. He became a regular in my practice and I looked forward to the hours when we would work together, talk and laugh. 

   After I closed my massage practice and returned to full-time nursing, I still saw him occasionally at the clinic where I worked. A year or so ago, maybe a little more, I learned he had Carcinoid Syndrome. I didn't reach out to him because I wasn't sure of the appropriateness of it due to HIPPA regulations. About six weeks ago I decided to hell with it and approached him in the exam room and said hello. We hugged. Ray had changed. He had lost a lot of weight.   His face looked different, but his eyes still danced and he smiled when he saw me. We hugged. His hug was still the same, warm and enveloping.  After his appointment he came to my office and we chatted about our kids. He said the cancer had taken away the two favorite things in life: Enjoying a good meal and a good shit. We hugged. I did not see him again. I learned today that he has died. I am glad for him, that he has passed into a place where I imagine he no longer feels pain and may once again enjoy those pleasures belonging to the body. I am so grateful I was able to hug him one more time and see his smiling face.

Blessings abound

   New Year's Approaches once again.   Once I grew through the phase of partying to keep me from thinking of all the things I wasn't in the year passed, I felt melancholy at all that I had not done, the time wasted. It was a refrain of the never-ending song of Not Enough. This year, I feel a shift. I find myself grateful for the abilities I did not have last year. I see the gains I have made. A few minutes ago, I was lighting the fire in the living room. The black stove roared to life after the match was put to paper, kindling and the larger logs that keep us warm this time of year. Music was playing and I found myself curious as to whether I could move my feet in some semblance of dancing.  I tried a few quick steps and was pleased to find my feet and legs obeying my attempts to frolic. One year ago at this time, I could not do that. When I went to my office Holiday party and I danced, it was with a cane and the support of my husband. Waltzing was difficult as my feet did not want to lift. This year at the party, I will be able to dance a little and hopefully not feel exhausted. I feel hopeful.  I am grateful to have that feeling at a time of year that finds me sulky and moody and counting my shortcomings. 

   Treatment for Lyme progresses. I had a bit of a set-back when having dental work done. The additional antibiotic I took to keep me from getting an infection on my knee replacements knocked my body out of balance. Balance is improved, but I now take an additional yeast medication. I had to stop the antibiotic for Lyme for a while. Starting it up again full strength fatigued me and reminded me of how I used to feel. That seems to be resolving. I'm looking forward to one day not feeling the burning in my arms and the achy pain that suffuses my body.  Equilibrium is being restored, little by little. 

   I appreciate my job and co-workers now than I have in the past. There is an improved sense of co-operation and camaraderie. I feel valued by my Practice Leader and the docs. There is still some back-biting and sniping, but it is much better than it once was. I have a nicer work station and it is more comfortable in which to work. A correction to my eye glass prescription has made working on the computer easier. Rumor has it I no longer look constipated when concentrating on my work. Perhaps they are just being kind. 

   This year I did not try to force the decorating and trappings of Christmas through my fatigue, aches and pains. I purchased a little boxwood tree from the florist. Erik festooned the picture window in the living room with multi-colored lights. We had dinner with friends and talked with the boys. It was a good day and satisfying even without the tree, the moving of furniture and all that decorating for Christmas usually entails. It is just the two of us. It was good enough.

   I weigh forty pounds less than I did last year at this time. I strictly adhere to the no-yeast diet The Lyme Whisperer has me on. There were times I resented my co-workers and their ability to eat the sweets and starches that would sicken me.  I made it through the feast times by bringing my own food, some un-sweetened seltzer and reminding myself that this was not a punishment but an act of self-discipline that would help me be healthier in the long run.   For me to remember this is a huge step that I had not taken last year. Trying to cover my inadequacies, real or imagined, with food is not my first coping mechanism anymore. If I need to, I have friends and family who remind me that I am loved just as I am. I believe them more now than I ever have. 

  I am truly blessed. Happy New Year!

Blessings abound

Tonight my heart is overflowing. So much has happened to so many in such a short time. The broader tragedies in the world: famine, war, disease, are abstract the farther away they are. The closer to home, the more something resonates.  Hurricanes, floods, people cold, people hungry, people shed of there surface identities, trying to make sense of current circumstance. Geographically still farther away then right here, right now. So many lives interlapping, raindrop rings on the pond of life. Closer to home, my sister dealing with putting her beloved dog down.  A daughter of a friend and of my heart, losing a third horse in her life tragically to an automobile. A third time in her short life. Appalling the odds. The tragedy of seeing a beloved companion dying in such a brutal fashion. The eyes of a friend as I sang Happy Birthday to her, eyes shiny and looking ready to tear.  The body of a man I've known for years ravaged by cancer, his eyes still able to light with delight at our meeting once more. So different to hug his body now. He is no longer robust, engulfing me like a bear. Still his hug touched my heart. I practice tonlin breathing in and out, hoping to transform the pain into something good for all. I am a an instrument of change in my own small way. I can only love, hoping for the best, detaching from the outcome. 

Blessings abound

  November as I always seem to remember it is here:gray, chilly and damp. Denuded trees, leaves bleached of color strewn on the ground like someone's forgotten dirty underwear. Mornings were snow spits down from the sky and the windshield of my car requires scraping. So far, it is not being accompanied by a corresponding black mood for me. Today I am tired and achy a little, but I'm pretty sure that's my body's response to the falling barometric pressure warning me of the approaching storm. 

   I saw my acupuncturist this morning. It was restful and restorative and I reluctantly arose from the table and dressed. The acupuncture treatments are helping me with the rigors of Lyme treatment. Until the beginning of the year when my health insurance deductible returns and my Health Care Savings Account will be utilized to pay for medications and doctor's visits, I will go every two to three weeks. It's helpful and I mean to take advantage of it.

  My friends, Ceredwyn and Tatiana have traveled to Northern New Jersey and hooked up with the Red Cross as medical volunteers. They solicited contributions to help with the travel costs and to also purchase supplies needed in the area:water, flashlights, batteries, masks and gloves. They are working there until Saturday. Tonight they will be there with the others in the path of the Nor'easter. I hope they can stay warm, all of them. 

  I had my performance review at work. It was excellent, with a lot of twos for "exceeding expectation."  It's nice to be recognized.  I am hoping our company will be able to do raises this year. It would be appreciated. Since I am only working four days, any additional renumeration would be helpful.  Speaking of work, I had to get another Prior Authorization for a patient for medications yesterday. I can usually do a PA in a short amount of time. However, this one is taking longer. The patient's insurance has changed their Prior Authorization process and it is now even more difficult to pursue it. I worked until just before six thirty Tuesday night, using the phone and gathering information. I had to stop because I do not know how to arm the alarm in the building, and the pharmacy was locking up. Reluctantly, I left. I decided not to go into work today to finish it.  I feel a touch guilty, but I need the rest. Tomorrow I will finish it and, hopefull, obtain it. The more resistance an insurance company offers when a medicine is requested, the more determined I become. I realize it's part of the deal people sign up for when they utilize insurance companies, but it often seems very unfair to me. I can't advocate for patients in the same ways I used to when working in the hospital or as a Home Health Nurse, but I can put my research skills and intelligence to the best effort for getting the patient what they need.

LoraBoraLabraDora is snoozing in the chair. It sounds lovely, so I think I will join her. Blessings abound

  I've felt really well this week. True, there are still moments of fatigue, but they have been fewer in the last several weeks. My pain has been less. My mood has been more calm, looking forward to the coming day instead of dreading it. Even work has felt more manageable. These are blessings and I see them and celebrate them as they come. I write of them now so I can return during the future times when I am on a different antibiotic and in the throes of a 

Jarisch-Herxheimer reaction: http://en.wikipedia.org/wiki/Jarisch-Herxheimer_reaction

My, that's a bit dramatic. But the size of the letters seems to scream the difference to me, so I'm keeping it. 

Saturday, November 3 was a beautiful autumn day. It was spitting snow when I left the house with LoraBoraLabraDora. I was taking her to the groomers. I can no longer trim her nails effectively because of pain and weakness in my hands. I have to admit, I don't miss struggling with her and Erik in order to accomplish the task. Off we drove in the Saab. The window was down on the passenger side of the car so she could put her nose out the window and scent the breezes. I dropped her off at Doggone Styles-or the spa as we like to call it- and set off to meet a friend for coffee.  We met at Carol's Hungry Mind, a favorite coffee house in Middlebury. The shop was crowded and warm, richly redolent with the aroma of coffee. My friend, wearing a kicky beret, ( I love that phrase) and I talked of the things in our live.  After a bit, we went out to the park and sat on a bench as the Saturday traffic flowed around us on the green. There were piles of leaves everywhere, the trees having given them up weeks ago. The air was cool and dampness pervasive. It was pleasant sitting on the bench with my friend, even though the topic heartbreaking. Her dog of thirteen years is ailing with cancer. She and her husband are doing their best to provide Ginger with love and attention during this time. They have opted not to subject their beloved companion to chemotherapy and medicines with side effects that would make Ginger's days harder.  Before I knew it, the spa was calling to let me know my pup was ready and we parted. 

When I had dropped Lora off at the spa, I had walked a short distance with her on the leash. I had forgotten my cane in the car and, feeling healthy and pain free, I opted not to retrieve it and walked with her. I had some weakness later, but it felt good to walk without my constant metal accessory. 

The remainder of the day was quiet. The time was filled with Erik's company and my continued re-reading of the Harry Potter book.  I'm on the Order of the Phoenix and really enjoying it. The woodstove was hot with a cozy fire. The cats draped themselves around me on the loveseat. It was comfy and quiet and oh, so wonderful.  Later we had a stir fry for dinner. Such a simple thing, standing to cut vegetables, but something I was not able to do one year ago. Later still, the clocks turned back, I talked with my sister on the phone. At Midnight, I went to sleep. 

Today I am cooking my food for the week. The soy pudding I depend on for breakfast, hard-boiled eggs for snacks. Later I will roast purple cauliflower and blend it with a cheesy sauce to make into soup. We are blessed to be in a warm home, with food to eat and each other for company. My friends Ceredwyn and Tatiana are travelling to New Jersey tomorrow to offer aid in one of the towns struck by Sandy in New Jersey.  I wish I, too, could go, but the Lyme treatment and my job keep me here. 

Blessings abound.

I am happy to report that we made it safely through SuperStorm Sandy. Lots of winds, about four inches of rain and flickering lights were the worst we endured. I am very grateful for this. Work sent us home at 1500 in anticipation of the oncoming storm. I felt like a kid on a snow day!  I read Harry Potter until eleven, sure that I wouldn't have to work in the morning. Alas! My practice leader never called to say we were closed. When I left Tuesday morning, all the fallen trees that would have blocked my path had been removed earlier in the morning. There were vertical striations of sawdust marking the road surface where the trees had been. 

Boy Wonder and his girlfriend, Shana, live in Astoria, Queens. He was in Cincinnati working on an exhibit of The Dead Sea Scrolls. I have heard from him and he is safe. I don't know if they received rain or snow from Sandy, but the storm reached that far inland. Shana was still in Queens. I have seen updates from her on Facebook via her phone, so I know she is ok. I am glad for that, too. 

I find myself counting blessings as the scenes of devastation from the coast are shown on television and the Internet. I pray for those who are caught in the aftermath, hoping help gets to them quickly. We are safe as our friends and family. I have some old friends on the Jersey Shore.  I don't know their fate and hope they evacuated safely. We haven't been in touch for several years, but my heart hopes they are ok and have a home to return to. 

Blessings abound

   I had another appointment with The Lyme Whisperer today.  I did the round trip without staying at a friend's nearer to Hanover the night before. She was sick and I didn't have the energy to drive after work last night. So home I stayed. Went to bed early. Slept well. Since moving one of my anti-depressants to the morning, I sleep better at night. My dreams are exceedingly vivid and cling to me through the early morning. By evening all that is remembered is a character or a snippet of plot. 

   It was a lovely day for a ride over Rochester Mountain. Many of the hardwoods have been denuded. Here and there scallops of vibernum lace the rocky hills. The sun was out and the weather mild, so I took LoraBoraLabraDora with me. She loves to ride shotgun and the mild weather meant she could safely stay in the car during my appointment. And to make doubly sure she was safe, I parked in the shade.

   LW is pleased with the progress I have made. He is thinking of switching me to the next strongest antibiotic. Since I saw him last, I have stopped taking one of the medications that keeps me from hearing my mother's voice in my head. I'm sleeping better. The anti-depressant I switched from evening to night makes me edgy and I find myself gritting my teeth during the day. However, it's supposed to help "energize" me.  LW is concerned that it is contributing to my anxiety. I use the majority of my energy during the day to focus on my work and get home without making a grievous error. I know I can't be perfect, but I am worried I will miss a detail or not triage someone correctly and have that slip or decision end up in harm to another. The brain fog is better during the day than it has been.  I am hoping I can continue to work through this. Tetracycline is the next drug up. So for the next three weeks I am to pay attention to how I'm feeling, sleeping and determine whether or not I am still benefitting from the Amoxicillin.  It is both scary and exciting to be thinking of the next antibiotic. Exciting because it means I am better than I was and progressing in treatment. Scary because it means becoming sicker in order to become healthier.  Scary because November is almost here and it is one of the worst months of the year for me.  Usually, my depression worsens in November. But now the question is: was the worsening depression in the past or untreated Lyme that was cycling through and sapping me of any good energy? Either way, it is something I must plan for and be vigilant. I must be mindful to get enough rest and not overexert.  

  When I came home tonight I made a lovely chicken stir-fry with celery, onions, green pepper, garlic, bok choy and spinach. My ginger root was dessicated beyond resurrection, so into the compost bucket it went.  i used Bragg's liquid aminos in place of the soy sauce I cannot consume and it was very tasty. I think it's time to get into pajamas and read a little before the World Series comes on. I doubt I'll stay up for much of it, but still, I do likes me some baseball and the Fall Classic will be it until February and Spring Training. 

Blessings abound.

The rain is falling outside and only a few hardwoods remain in leaf. Rich russets and yellows undulate through the hills. Occasionally, bright orange blaze stands out. In weather like this, I long for the comfort foods of autumn. Most of them are out of reach for me due to the dietary restrictions of the No-Yeast Diet. I'm longing for cheese sauce in particular. I can have the dairy, the problem is thickening the sauce to a pleasing consistency and mouth feel. I've been perusing the vegan cookbooks I have and am thinking that agar agar flakes or powder would do nicely for thickening warmed milk and binding it with shredded cheeses. I have a Buffalo Mozzarella, Orb Weaver cave-aged cheese and a sharp Cheddar from Cabot.  A little butter and a bit of paprika and onion powder and it should be palatable, ready to be poured over steamed cauliflower and baked.  I am excited about this possibility and take it as a sign that my brain is improving on the antibiotic regimen. 
I'll let you know how it turns out!

Blessings abound!

Drat! I have no agar but I do have kuzu. The carbohydrate count is a little higher than I'd like, but I think that diluted with the other ingredients a serving of sauce would not be prohibitive. Now to find out how to prepare it. Thank goodness for the Internet!

UPDATE:  The kuzu helped thicken it, but not to the consistency I would have liked in a cheese sauce. However, it is a thick enough consistency that if I steam and puree two heads of broccoli with it, I will have a lovely soup. So not a complete disappointment by any means. The roasted cauliflower was savory and the slices of garlic roasted with it crisp and delicious. 

So many things weighing on my heart these days, I'm not sure where to start. My mother is still in the dementia unit, deteriorating. Her speech is slurred and she sounds over-medicated. She perks up more as we talk on the phone. These days, the mom that could be kind, the mom that was glad to hear from me or see me is more present in my mind then the woman who beat on me, subjected me to molestation from different men and who was paranoid.  I worry that I have not been a good enough daughter, wonder how I could do more and then settle for knowing that she is in a place where she is safe, has her basic needs met and cannot take her medications wrong. I miss the woman who liked to feed the birds in the field behind the house in Stockton and walked in the woods beyond. 

I've also been thinking of a friend who was a teacher who gave lip service to us being peers. I had her on a pedestal. I trusted her with a secret I was ashamed of and she used it against me. I've come to see that part of it was her discomfort. Part of it was me not shedding the past, putting it behind me as something that happened and time to move on. There are things I learned from her that would benefit me in my current journey with Lyme, but I can not bring myself to do them. If I do, then I am affirming that she was right that I should be ashamed. That I was broken and would fall apart and need to be picked up and put together. I don't like the feelings this arouses. I find myself considering that the thing I said to her, to punish her and to hurt her, was unnecessary pain inflicted and I regret that I did it.

I am taking the antibiotics every day now. Three times a day. it's becoming harder to work, fatigue keeps rearing it's ugly head. I try to maintain a positive attitude, but some days it is a struggle. I become irate when people don't pay adequate attention. My patience is thin.  I've been up for four hours today and I'm ready to take a nap. But when I sleep my dreams are vivid and sometimes disturbing. The frustration I feel in waking life spills over into dreams. Sometimes I wonder if I am dreaming my future and wish for a way to rise above. I've been practicing Tong Lin, breathing in the pain knowing others are suffering, too and breathing out the hope that pain will be transformed into calm, into peace, into something else. 

Perhaps a nap is in order.

Blessings abound

  I had the most amazing weekend in NYC with Boy Wonder and his girlfriend.  Luckily for me, my symptoms were at a minimum. I had lots of time with my son with and without the lovely Shana. And I was able to get to know Shana better. I chose to look at the city as an exotic amalgam of scents, odors, people and architecture. Surprises, most of them pleasant, around every corner.

   The train ride on The Ethan Allen in and out of the city was quiet, for the most part. On the trip down, a woman sitting across the aisle from me was listening to a recording on ear plugs. It was so loud I could hear it from where I sat. I decided not to let it bother me.  I daresay I had a more relaxing trip for that decision. Penn Station was big and overwhelming. So many people! all poised to find the gate for their train as soon as the big board proclaimed the location of their train.  As I was talking with Boy Wonder on the cell phone, a woman near me threw herself on the ground and was screaming. At first I thought she was having a seizure and was going to see if she needed help. It quickly became apparent she was screaming that a woman next to her had touched her purse. I was a little shaken, but the clamor of her screams and the police running to the spot helped my son locate me.

  Meals were managed around my no yeast dietary requirements. I did indulge in some fresh tomatoes. When we dined at Shabu Tatsu in the Village, I did indulge in some sauces that I'm sure were on the off-limits list. It was delicious!  Afterwards we attended Peter and the StarCatcher  http://peterandthestarcatcher.com/ at the Brooks Atkinson Theater. It was phenomenal! We laughed til we cried and laughed again. 

Sunday we went to the 9/11 Memorial and then to The Metropolitan. More visual feasting. The fire fighters in turn-out gear at the Memorial was moving. They have made something beautiful out of the horror. 

Today I am remembering the highlights of the trip as my Lyme symptoms remind me to rest. I feel so blessed to have shared this time with Mason and Shana in NYC.

Blessings abound