Sharon E. Rainey's Blog, page 7

First seating at my new writing space at the cabin and it feels perfect.

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This space that is just mine occupies a quarter of the house. Jeff is ok with that. He knows how much this space settles me. It sets me right.

I purposely created this room to be a space of happiness, contentment, and ease. I hung photos, counted cross-stitch pieces, pictures, and art that make me smile – that bring me joy.

The room itself has a queen size bed for guests and a comfortable chair and ottoman when I want to read or work from my laptop.

And then I have my writing spot, my writing space.

First, let me tell what it is not. It is not a space to pay bills, to file papers, or do busy work. I purposely keep no drawers, no storage beneath. I do not want any energy to fill this space that will not help me create. I also purposely kept this space from connecting to the internet, again to decrease my distractions.

By design, it is a small light-colored wooden table, to keep me focused on the Mac screen before me and not all the things around me. I have a propensity for collecting meaningful things (aka clutter). This space is a strong effort to reduce the clutter and keep my focus clear.

Above my monitor hangs the first art I purchased in 1988 with Mom, a fiber piece entitled Rope Trick.

On my desk, I have a salt lamp offering healing energy, a tissue box for the tears that inevitably come when I write, and my hat from Turks and Caicos to remind me of the #vacationofalifetime.

Carol and I found our hats in a small touristy store, the first and only one we visited. I had been looking for a comfortable hat for years. I am picky about my hats and, as such, I do not wear them often. The only two places I have found the other perfect hats were in Naples, Florida and the gift shop at White Sands, New Mexico. I find it amusing that I have only found my perfect hats in the places where I have experienced great spiritual awakenings. But we both found what we wanted. I bought two (turquoise and pink) just because I was giddy from finding the perfect hat, and we were in and out in under five minutes.

I have three more items on this small table:

a turquoise egg sitting atop a tripod of brass fish that Jim had. I have no idea of the emotional significance of it for him but it’s turquoise, it’s beautiful and it reminds me of him.
An inexpensive heart shaped brass box with a deep burgundy glazed onto it and small pieces of glass. A golden vine sits atop the burgundy. Inside is painted like a mother of pearl opalescent and then a cream swirl topping it. It was Mom’s.
Last, I have a clay ashtray from Juarez, Mexico.       Mom and Dad didn’t use it as such. They bought it for the colors. The top of the dish is lacquered with brilliant reds and golds and sapphire blues. It reminds me of Dad. It sat beside “his” chair in the living room for decades.

To the left of my table are silk daffodils. It’s a little joke I have with a friend who knows it is hard for me to wait for Spring sometimes, so she brings Spring to me by placing silk flowers in my yard. I know it sounds silly to most, but to me, it is a soul saver. The silk flowers tell me I am loved and to just hold on for the rebirth, the renewal, the restoration of life.

And then I have my window with a view. Our front porch is ten feet deep. We purposely made it so numerous individuals could be out there without the necessity of talking to one another. Guess which introvert demanded these dimensions?

We have options on the front porch: the sole chairs and ottomans for reading, writing, meditating, and of course napping. We have the glass table for lunch and often dinner if the wind is not too strong. We have the white wicker sofa and chair with cushions offering conversations. We have another metal table and two chairs for projects, whether artistic or practical.

Beyond our porch stand two black walnut trees, separate but within 30 feet of one another. Hummingbirds zoom in and out of the branches, taking turns at numerous feeders we have placed nearby. We see goldfinches, swallows, cardinals, red winged blackbirds, red tail hawks, and even a bald eagle. Each fall, we watch the southern migration of thousands of butterflies dotting the bushes and tall grass with every color of the rainbow. It is a silent miracle to behold, to be present as they rest, sun themselves, and move along towards their winter destination.

Bluebird boxes house the babies. With a spotting scope I have a “bird’s eye view” of the parents entering the box, feeding their young, and then swooshing out to capture more worms and bugs and such.

Beyond the walnut trees, I see the other side of the valley, carpeted with trees – Dogwoods, Pines, Maples, and Redbuds – dotted with tiny homes, and a single winding road, barely wide enough for two cars to pass. Eventually, the sun will set and spin the sky into brilliant pinks and purples and blues.

Until it sets, the afternoon sun shines in, warming the carpet, creating the dogs’ afternoon napping spot. Their heads pop up each time I move. They are ready to follow me wherever I go, kitchen or bathroom or porch the most often.

For now, the desktop picture on my monitor is from my wedding day. I am kissing Dad on the cheek. I remember that moment clearly, both of us relieved that THIS wedding day was a happy day for both of us.

“Jeff will be your rock,” Dad said when I told him Jeff had asked me to marry him. I had no idea how correct Dad would be. Twenty-five years later and he is more my rock, my foundation for life than I ever could have imagined.

Dad walked me down the aisle for both marriages, but for this second and final walk, he smiled big, took his time, stepped tiny steps, acknowledged both sides of the aisle, and beamed with pride, knowing this time I had made the right choice and would be happy.

Twenty-five years later, we have a weekend cabin, a second home, our respite from the politics, traffic and urgency of the DMV area.

After a year of construction and final touches, I now have my writing space.

What a glorious place to be.

 

May is Lyme Disease Awareness Month. I will spend this month pulling quotes from our about to be released book Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners. I apologize for the delay in its publication. We had planned to be in print by May 1, but my father’s sudden illness and subsequent death pushed back the production schedule.

 

“It does not appear the duration of your disease determines whether or not you will heal. This is great news for patients who have been ill a long time.” – Dr. B. Robert Mozayeni, Lyme Savvy

 

Dr. B. Robert Mozayeni

When I saw Dr. Mozayeni for the first time in September, 2009, I had been sick for 29 years without reasonable explanation or viable treatment. Having been sick for so long, I almost thought I would never heal. I had seen too many specialists, developed too many rare conditions. I had almost given up hope.

After 19 months of treatment, I tested clear for Bartonella in April, 2011 and have tested clear for the five years since. I am still battling Babesia, which at this time is incurable but treatable.

This past weekend, I planted herbs and annuals in a small garden. My hands had not touched dirt since 2008 I think because of the vast fatigue these co-infections cause. Healing is happening.

 

I was the typical “List of Symptoms” patient. The simplest way to present my own history to you is to show you how many different types of physicians I saw, some of the major medical events that occurred, and of course, the various diagnoses I was assigned. I know many patients can probably relate to this snapshot.

Physicians I saw for symptoms

Often, I saw more than one each of the following:

Cardiologist, Chiropractor, Dentist, Dermatologist, Endocrinologist, Gastroenterologist, Internist, Neurologist, Gynecologist, Neurosurgeon, Ophthalmologist, Optometrist, Oral Surgeon, Orthopedist, Osteopath, Otolaryngologist (ENT), Physical Therapist, Psychologist, Psychiatrist, Rheumatologist, Surgeon, Urologist

Sharon’s Symptom History

1981: viral meningitis, unexplained fatigue and exhaustion

1984: diarrhea, abdominal pain, loss of appetite, mouth ulcers, grinding teeth/jaw pain

1988: elevated gastrin levels

1993: depression and anxiety

1995: migraines

1996: h.pylori infection

1999: shattered right foot

2001: recurrent sinus infections, night sweats, hot flashes, dry skin, itchy ears

2002: falling easily, pain in knees and thighs, muscle weakness, sensitivity to sunlight, memory loss

2003: clumsiness, repeated falls, muscle weakness, thigh pain, swollen joints, tooth dies

2004: gallstones, abdominal pain, fatigue, hair loss, noise sensitivity

2005: gastrin level elevated, depression, forgetfulness, trouble focusing, sticky blood

2006: diarrhea, headaches, daytime sleepiness and insomnia, elevated heart rate, word and name search, phasing out of conversations

2008: persistent, dry cough, numbness in hands and feet, chest pains, muscle twitching

2009: back pain, hip pain, occasional blurry vision, incontinence, unexplained rashes, positive Lupus test (positive ANA with speckled pattern)

Other General Symptoms

Allergies: seasonal allergies, chronic sinus infections

Cardiovascular: low blood pressure, perspire easily, dizzy upon standing

Constitutional: migraines, weight gain, fatigue, cold extremities, afternoon drowsiness, night sweats, sensitivity to chemicals

Ears, Nose, Mouth & Throat: sensitivity to sounds, ringing in the ears, sinusitis, mercury/silver fillings in teeth, mouth ulcers, jaw paint/teeth grinding, dental problems, unexplained face pain

Endocrine: heat intolerant, cold intolerant, thyroid disorder, low body temperature

Eyes & Vision: dry eyes, blurred vision, floating spots, light sensitive, peripheral waves

Digestive System: bloating, trouble digesting fats, hemorrhoids, ulcers, irritable bowel, diarrhea, abdominal pain, nausea/upset stomach

Genito-Urinary System: incontinences, cramps, heavy flow, PMS, menstrual irregularity, menstrual pain, pelvic pain, health fluctuates with cycles, hot flashes

Hematological: Anemia, leg pain with walking

Immunological: auto-immune disease (Lupus)

Integumentary: acne, dermatitis, yellow tone, brittle nails, dry/brittle hair, crawling sensation in skin, various rashes, on/off rashes, skin sensitivity, sensitivity to sunlight, hair loss

Muscular-Skeletal: back pain, intolerance to exercise, heel pain, disc problems, joint pain and swelling, joint stiffness, bone pain, muscle weakness, muscle twitching/spasm, muscle pain/cramping, sore soles in the morning, neck stiffness/pain, tremors

Neurological: clumsy, trouble balancing, numbness/tingling, forgetting simple tasks, disorientation/getting lost, difficulty with reading and concentration, speech difficulty, word and name search, memory problems

Psychological-Behavioral: vivid dreams, fearful/worrier, depression, narcolepsy, insomnia, emotional/crying easily, season affective disorder, feeling as though you are losing your mind

Respiratory: shortness of breath, chronic cough, air hungry, snoring, sleep apnea

Other diagnoses given:

Anxiety, Bursitis, Depression, Dry Eye, Epstein-Barr, Eczema, Gallstones, H.Pylori, Hashimoto, Herpes Simplex I, Hypo-Thyroidism, Idiopathic Hypersomnia, Idiopathic Intermittent Right Temporal Waves, Incontinence, Irritable Bowel Syndrome, Lipoma, Migraines, Peri-menopause, Peripheral Neuropathy, Shingles, Sinusitis, Stomach Antrim Atrophy, Vitamin D Deficiency, Viral Meningitis, Zollinger-Ellison Syndrome possibility

Today’s symptoms:

Fatigue, night sweats, sensitivity to chemicals, sensitivity to sounds, thyroid disorder, low body temperature, dry eyes, incontinence, hot flashes, acne, back pain, intolerance to exercise, disc problems, joint stiffness, muscle weakness, muscle twitching/spasm, tremors, clumsy, trouble balancing, numbness/tingling, memory problems, controlled sleep apnea

The diagnoses I still have:

Depression, Dry Eye, Hypo-Thyroidism

As you can see, my body has made great progress. Am I 100% well? No. But I can hold a job and a conversation. I have a full life. No matter the severity or length of illness, it is most likely that you can heal, given the treatments that best suits your body, mind and soul.

Sharon & Earle laughing at during Gayle and Ken’s wedding reception. October, 2014

I think I knew Dad wasn’t going to survive on the second day of his hospitalization. He was having so much trouble breathing. I was rubbing his head and trying to comfort him. The most frequent question we asked was, “What do you need Dad?” And this one time he replied with, “I just need to REST.” The finality of his statement loomed heavily in the room that night.

He was having so much trouble breathing. I was rubbing his head and trying to comfort him. The most frequent question we asked was, “What do you need Dad?” And this one time he replied with, “I just need to REST.” The finality of his statement loomed heavily in the room that night.

I started this eulogy two weeks ago when we first learned of Dad’s terminal diagnosis. It started out as “Dad’s Words” – some things Dad wanted to make sure were said in a particular, articulate manner.

I believe that if he had the energy to prepare for his Judgment Day with God, Dad probably would have written his own eulogy. It wasn’t about bragging on himself. Rather, it was important for Dad to make certain that each of you understand why he did what he did in life. And he asked me to explain it for him.

It wasn’t about bragging on himself. Rather, it was important for Dad to make certain that each of you understand why he did what he did in life. And he asked me to explain it for him.

There is nothing quite like having to a write a eulogy for someone as superstar as my father. And, when he asked me to read him my rough draft just 24 hours after being given the assignment, I was intimidated.

The best way I know to honor my father on this day, is to not only relay the words he wanted me to share with you, but to also tell you how he responded at certain points when I read him his own eulogy.

April 6, 1991 – Sharon & Jeff’s Wedding Day. Photo by Philip Bermingham.

Just two months prior to his death he was parasailing in Turks and Caicos with two of his granddaughters. Mom and Dad had gifted all 17 family members with the vacation of a lifetime, which was a life changing, healing event for everyone.

When Dad was initially pondering the safety and sanity of parasailing at age 86, Heather responded, “Granddaddy, if you died while parasailing, that would make you such a badass.” To which he chuckled and agreed and said, “Let’s do it.”

On Monday, February 29th, our lives changed forever. Dad was admitted to the Intensive Care Unit for pneumonia and sepsis. Dad fought with every cell in his body to beat the disease. But at week three, doctors told us this was terminal. We were shocked. Dumbfounded. I think we still are.

Some of the physicians said, “It’s always hard to tell. You could live maybe another two to six months.” Dad looked around at them and bluntly stated, “Listen, if it’s my time to go, I’m not wasting it sitting around here. It’s nonsense to do such a thing. Let’s get on with this.”

I remember standing there thinking, “Well, it’s not like anyone can help you with this sort of thing.” But Dad was determined. And he was tired. So very tired. He needed to REST.

But within days of signing all the necessary papers and saying goodbye to his lone surviving sibling, Dad started to pull away, disconnect. He died just one week after learning of his terminal diagnosis. Dad had a strong will and I think he used it to hasten his death and to end our suffering.

For the 26 days that Dad was in the hospital, we had many conversations. Twenty-six days and nights of pure, simple love between a father and his daughters and his wife. We each said everything we needed and wanted to.

None of us has any regrets except for the big one: that one of the most amazing men in this nation, in this Commonwealth, in our family, has died too soon. Most of the following comes as excerpts from some of those conversations.

Dad said, “When God wrote the book of my life, He failed to mention this last paragraph. This is NOT how my life was supposed to end.”

With mom’s history of having strokes over the previous 20 years, he thought for sure she would die before he did. He was bewildered by why God would take him now.

Dad spent days upon days providing us with To Do lists, passwords to accounts, even telling us where to find his Fairfax County Library card. He updated all of his affairs so no one would need to worry about anything.

Dad ALWAYS felt a deep sense of responsibility to his family and his final days were a clear example of this.

I think this is a significant part of why Dad hung on – his major concern was about how mom would be taken care of after his death. I think he tried to bargain with God on this one point for a few days.

(At this point, as I was reading, Dad grabbed a hold of my hand, never to release it until I finished. Tears fell from his face. I had hit a raw nerve. It was obvious that Dad was still trying to bargain with God for more time.)

So this is where I am assigning a task to each of you on Dad’s behalf. I ask between today and October 15th, which is Dad’s birthday, that each of you in this room, make physical contact with our Mom. Come and have lunch or dinner with her at Greenspring. Drive her to visit Dad’s grave. Take her to a movie. Bring some tea and scones to her apartment. Do something with our mom in person. This gives you six months to let her know she is not alone and to show Dad we are all indeed taking care of her.

Dad reassured us that he was not fearful of dying. “I don’t know what’s on the other side, but I am not afraid.” He called himself an “unchurched Protestant” after formally resigning from his original religious organization. That group had instituted changes in their tenets that Dad could no longer accept or abide by. But Dad didn’t want me to give you details of this, because he didn’t want to offend anyone.

Dad was raised in a church-going family, and he continued that tradition with the three daughters, attending weekly. We said Grace before each meal. We prayed in times of need and in times of gratitude.

Dad believed in God, Jesus Christ as his Savior, and the Holy Spirit. He was very private about his faith but he was strong in that faith. Dad felt strongly that one person’s spiritual program should not be pushed on anyone else. It is between God and each human being.

Dad summed up his life fairly simply – – “Throughout my life, I didn’t want to offend anyone. I just wanted to do good, help people, and not hurt anyone.”

Dad felt very strongly that he had an angel on his shoulder throughout his entire life.

“Every negative event in my life was always, ALWAYS followed by an incredible gift. I was very fortunate to have many miracles in my life.”

When I asked him what the miracles were, he mentioned one and then chuckled and said, “There have been so many miracles in my life that I didn’t always see them.”

Dad also believed in hard work. “I believe God has a plan, but just in case the plan doesn’t work, I want to know I did everything I could to make it all come to fruition.”

He also believed that “the harder you work, the luckier you become.” By that notion, I can only assume that the BDM employees were some of the luckiest people ever.

Dad was a man of honor. Every person I have met who knew Dad has told me so. Dad was honorable in his 64 years of marriage to Mom. He was honorable in his friendships, and he was honorable in his business relationships. For 30 years at BDM, he had opportunities to work with what I would term “nefarious characters.” And he chose not to. Honor was THAT important to him.

(This is when Dad gave me the thumbs up and whispered, “Spot on.”)

Selfie, Naples, FL, February, 2015.

Dad never broke a promise to me. Never in 53 years. He didn’t make many promises either.

Dad always had a strong sense of right and wrong. We have a running joke in our family about “Do the Right Thing.” It’s usually attributed to when Dad was trying to control things in a situation. He explained he was just trying to do the right thing. And he expected it of others as well.

But doing the right thing ran deep in Dad’s veins from early childhood. It was a core value he took very seriously. He always tried to do the right thing, to make the right choice.

Dad was born just two weeks before the start of the Great Depression. Having survived that and World War II, he entered ROTC in high school, preparing for deployment to Korea. Instead, he was pulled out of signal corps school and then sent to the army’s special weapons branch.

This reassignment to White Sands, New Mexico was the beginning of Dad’s dedication to defending our nation’s freedom for the next 40 years.

Dad was kind, a gentleman, always opening the door for others, literally and figuratively. He used words like reckon, yonder, y’all, and cattywampus. In almost any discussion, he could persuade you to his side like a southern minister calling the sinners to the pulpit.

Dad told jokes often and he told them well.

Dad would chase us around the house acting like a gorilla, jumping on the beds even and then tickling us until we screamed for him to stop.

He was the official quality control taster for anything that might leave our house such as cookies, brownies. He took this particular job very seriously.

Photographer: Robert Boag

Mom and Dad raised three daughters in the 1970s who were taught we could do anything we wanted to. Anything. They paid for our undergraduate and graduate degrees. Dad reinforced to us that education would lead to more opportunities for growth and change. And he was right. He and Mom paid for the college educations for some other people in this room as well.

And they raised three such different daughters. It baffles me sometimes. Our Masters degrees are in Business Administration, Nursing, and Education. We chose three very different occupations as well. Gayle is the medical expert. Carol is the logistics coordinator. And I am the writer. And in raising each of us, they honored our strengths and allowed each of us to flourish uniquely and independently. Dad did this for many other women throughout their careers at a time when most men did not.

One morning when the nurses were positioning dad to prevent bedsores, they laid his arms on pillows. I chuckled and said, “Dad you look like you are sitting on a throne! Maybe you were an Egyptian pharaoh in a previous lifetime!” He smiled. “Maybe,” he replied.

And that got me thinking.

Dad always said, “Don’t bury me with anything valuable. I’ll be dead. I won’t need it.”

But pharaohs were always buried with many treasures to help them in the next life.

So, Dad, last night, when I saw you for the last time, when I whispered goodbye in your ear, I slipped a few things into your coat pocket, just in case you need them:

The gypsum sand of White Sands, New Mexico where you and I each began our careers, yours in national defense, mine in writing.
A shell and sand that Jeff brought to me from his beach excursions at Turks and Caicos – a reminder of the best vacation ever.
A heart shaped stone – to represent the shatterproof, unconditional love you shared with your family and friends on a daily basis.
And lastly, a little bit of . The dark honey. I know it was your favorite honey and it will carry your sweetness into the next dimension.

Earle C. Williams, January 15, 2016

Dad, your job on Earth has come to an end. You did it very well. I promise you we will take care of Mom. And we will all be ok.

Today, we offer you the rest that you so dearly needed and asked for less than a month ago.

May you finally rest in the eternal peace of God’s love.

I love you, Dad.

After 26 days in the hospital, my dad died this past Good Friday at 5:43 am.

We didn’t know his illness was terminal until a week before he passed.  Until then, my sisters and I kept vigil 24/7, promising never to leave Dad alone as per his request.

I am attaching his obituary .  Many people in the Northern Virginia area knew my dad ().  He left quite a legacy for so many.

Visitation will be at on Wednesday from 2-4 pm and 6-8 pm.

The funeral is tentatively set for Thursday morning, exact time and location still being determined.  It has been a bit difficult to get things locked in on a holiday weekend.

Death, grief, sadness, all play a significant part in a person’s healing or lack therof. I am very fortunate to be surrounded by people who are sensitive to my physical needs for rest and quiet.  But as anyone who has experienced the death of a parent or close grandparent knows, this is not easy.

I still can’t talk much. Just going through the motions and trying to take care of Mom. Please pray for her to find comfort and peace during this time.  They were married for 64 years.

I cry at the oddest, insignificant and significant moments.

“Who will say grace?” was today’s moment.

Four years after I started this book, I have finally sent it to the formatter for pricing and a schedule.  I am beyond excited to get this book out.  Nervous, but excited.

So, why am I nervous? Because my heart and soul has gone into this project. Dr. Mozayeni and I have spent countless hours talking, writing, editing, and even negotiating what goes in and what doesn’t. It has been easy for me to send out blog postings of what I think and feel, but I have pretty much kept mum on what Dr. Mozayeni has been thinking.  I want to make sure I have it right.  I have to be sure he is ready to put his words into a published format.  So, some of these chapters, I have been chomping at the bit to publish!

I think the Lyme patients will be satisfied and encouraged by this book.  I think Lyme patients will feel validated. And they will find specific suggestions to help them heal.

I’ll keep you posted.  Thank you to everyone who has helped me along this journey.  Gratitude abounds.

I am from

The Source

Lover of Light and Laughter

I am from dancing and playing Angels and petulant Souls

I am from Priests

Assigned Sacred Tasks

I collect the sacred tears, the profound sadness

Offering alms.

I am from a groovy, magical, mysterious pink waiting room

filled with fresh blossoms and sunlight.

I am from vast Grand Canyon abstract landscapes,

deep as the suffering in your soul.

I am from Blue eyes and Green eyes and Brown eyes.

I am from Eyes that see only my Soul and Hearts that love me with all.

I am a Channel, a Translator, a part of and sometimes a part from

I am Connected and Isolated instantly and eternally

I am from what was, what is, what cannot and yet will be.

I am from grey Dust, emerald Gems.

I write,

I sing, I suffer,

I wonder, I wander

I heal and I return

All in Love.

Sharon Rainey 2.18.16

I still believe in all simplicity, that love is the answer to everything for everyone.

However, we must love ourselves first and foremost. If we cannot take care of ourselves, we cannot help or connect or love anyone else.

Then we must love our families next. They must come before anyone else (except ourselves).

We have rings around us that we must honor. And we must pay attention to those rings/circles and figure out who belongs in each circle. The lines can blur sometimes.

When we are filled with anger, depression, or resentment, we cannot love. When we feel sorry for ourselves, we cannot love others. We can’t let others love us.

Love has to be a free flowing energy that moves easily between people’s souls.

My friend whom I have never met in person, , entered hospice this week.

You know when you talk to someone about something that you have been seeking wisdom for and they just HAVE it? Like it’s no big deal? And you are standing there trying to figure out how the hell to get a piece of it? You know . . . when you want what they have . . .

I want Laurie’s heart, her wisdom.

My favorite line in here: “I spent many, many, many hours on the Internet scared the crap outta me, and it just made me want more control. But what I learned in the process of all that suffering, through wanting control, was that what felt better was to make a choice. So the power – MY power – lies in making a choice, not in having control.”

Aunt Betty

It takes me awhile to process things. good or bad. I have to pull in and figure out the swirl in my head. The death of Tom Garell, the husband of my friend i never met , and my other friend i never met, Laurie Foley, entering hospice today, has me at “over my limit.” I know death is part of the process. in some ways, but it certainly doesn’t make it any easier for the ones dying or for the ones left behind.

I had a “dream” last week about my Aunt Betty – only this dream, i am now convinced, was an experience where my soul traveled and i met her soul somewhere “in between.” I HELD my Aunt Betty. I held her for a long, long hug. I FELT her skin. My fingers trailed from her wrist to her shoulder, feeling her soft skin.

We talked. She talked. I listened. I could see my grandparents and my uncle behind her, smiling, filled with joy. I wanted to go closer to see them and touch them as well. She would not let me.

Aunt Betty was beautiful, thin, in no pain, not suffering. She was smiling, joyous. She gave me a message and then she said it was time for me to go back. I didn’t want to go back. And when I woke up, I SOBBED all over again. It was as if she had just died all over again. The grief this week has been fresh and raw.

I desperately want to go back to where ever it was I went, to that in between place. The experience was incredible. But I am not sure I can take that intensity of grief again.

I don’t know what the purpose of all this is. But I know there is one. I know dying is hard work. I know grieving is hard work. I know love prevails over everything. I know my loved ones, even when they are dead, they are with me everywhere I go, with all my thoughts, all my feelings, all my energy. They are here with me now.

Being able to TOUCH my Aunt Betty last week was incomprehensible and amazing. Some of you will think it was a dream. Some of you completely understand what I yet cannot fully comprehend. So, Kari, please know Tom really is with you right now. He is beside you as you were beside him for the past year+. He is with God. He is not in pain, he is not suffering. One day, you will join him again. We will all be there and we will all be having one heck of a party filled with joy and love.

I saw my latest blood smear last week.  It was not what we expected.  I thought I had beaten the Bartonella and Protomyxzoa Rheumatica and the plan was to next start attacking the Babesia.  The plan has now changed.

I go back into full treatment late next week after the “after effects” of my latest vacation wear off.  I will start back on anti-malarial meds.

Once I get the routine down for those meds, and once we get the blood work PCR confirmation from , I will then start back into Bartonella treatment.

I don’t know how long this protocol will be.  I didn’t ask.

Dr. M reminded me that when I went through treatment in 2009, the treatment protocol was version 1.0.  Now, he is on version 8.0 or so.  It will be better this time around.  He is also adding two new drugs for me to hopefully reduce the side effects of the medications.  These will hopefully help with pain, mood, anxiety, and depression.

I’m also still getting Toradol (NOT Tramadol) injections each time I go up there.  These are anti-inflammatory only but help ease my lower back pain tremendously, temporarily (24 hours).  He has been able to reduce my pain considerably.

I know Babesia is considered incurable.  But if anyone can cure me, I believe it to be Dr. M.  No one else is even trying.  He has some amazing research done and some incredible theories that I am willing to help him test out.

The Bartonella was supposedly incurable as well back in the early 2000s, but Dr. M has put patients in remission for five and more years.  I thought I was cured.  I was in remission for 4.5 years.  So, I will go through treatment again and plan for a much longer remission next time.

The Protomyxzoa Rheumatica is a huge unknown.  It was discovered by in 2011.  Dr. Fry and Dr. M are the only two physicians I know of who are researching a treatment for it. Imagine finding a certain cancer less than five years ago and how long it would take to find a cure for it. I am very lucky.

The past six years have changed my life dramatically, but I remain grateful for the treatment I have been able to receive.  I know without it, I would not have been alive today. I do not say this lightly.

Many of you have asked specifically about my symptoms. My symptoms are overall better than they were six years ago.  The peripheral neuropathy in my feet is worse and thus my balance is worse.  My handwriting is basically illegible even to my own eye.  The twitching and tremors remain but have not worsened in the past six months.  The lower back pain is better – I haven’t been in physical therapy for about six months now. The joint pain is the same. The brain fog, cognitive impairment, processing skills are still poor at times, but less frequently than six years ago.  The memory loss is still significant. And the fatigue is still all consuming at times – that is probably my greatest frustration at this point.

No, I am not happy. Yes, I am disappointed. But I know this is not starting over. It’s just a blip in the trend. It happens. This treatment protocol will be easier, better, faster, more effective. I will keep you posted.