Dearest Friends and Family,
As I prepare to write each year’s letter, I reread the previous year’s letters. Rereading my 2016 letter was like reopening a fresh wound and rubbing salt in it.
My grief has “improved,” lessening in intensity and frequency, but it remains constant.
I have always believed that even our worst moments offer gifts, if not immediately, eventually. I know God is always with me, guiding me to my next growth opportunity.
At the end of February, I was dreading the first anniversary of Dad’s admission to the hospital and the 26 days that followed. That same week, I started dreaming in images, something I have never done before in 54 years. It became so intense and obsessive, I bought some paint and brushes and try to paint what I saw in my dreams. I had never painted, drawn, or done anything artistic before that week.
The entire month of March, through the first anniversary of Dad’s death, I painted.
And I have not stopped.
Nor have the images in dreams and visions.
A friend saw my work and encouraged me to join our local Artist Studio. I did and then I participated in my debut show in the local art tour. I sold my three largest pieces and did very well. It was a fantastic start to a new passion. I have also completed commission works for individuals as far as Las Vegas, Nevada. You can see some of my pieces at www.sharonraineyart.com. I had two more successful art sales/shows in December.
In the meanwhile, Jeff started perfecting his work with the camera lens. His favorite subject is a pair of bald eagles near our cabin in Maggie, VA. Though, honestly, I love his scenic pieces more so. He can capture birds in flight and sunsets on the pond. I think I have talked him into joining the local Artist group as well and participating in local events.
In September, Jeff and I saw Sting in concert at Wolftrap. Score one for Wolftrap. That concert ROCKED. Sting ROCKS. Wolftrap is still infused with Dad’s spirit, so it’s a double-edged sword when we attend. I feel Dad’s spirit there, which is good and hard.
I still drive to Mom’s once or twice weekly for dinner. She went to Wolftrap once this year – progress. Mom also traveled with Carol over a long weekend, once in May to San Diego, and once in November to El Paso. She thoroughly enjoyed each trip to see long time friends.
Heather still loves her job at the Loudoun County Detention Center, running treatment groups within the population. She is dating a young man her own age (36 is still young, right?) whom we adore. Heather had her gallbladder removed earlier this year and Garnett handled her beautifully. He loves her and it shows in every way he looks at her, talks to her, and treats her.
Joey is still in California, working and enjoying his life. He is saving up money to open his own restaurant. He turned 34 this year.
Stephen and Hannah are still living in Richmond, though now in a much quieter community that better suits them. Stephen is working in the vape shop, but considering attending culinary school. Hannah’s art skills are exploding and I remain in awe of each piece she completes. We are completely different in skill areas. I have great respect for her tenacity, attention to detail, and patience.
In November, I traveled to Grand Junction, Colorado for an art resin course at www.DiamondEpoxy.com / www.CountertopEpoxy.com. The course gave me more working time with the product and I absolutely love it.
Our office manager (and friend), Kathy, accompanied me. I bribed her with tales of hiking trails and scenic views. Kathy is an avid hiker. Our first morning there, we took Route 128 from 70 to Moab, Utah. It’s usually 1.5 hours to drive, but it took us four hours to drive because we kept stopping to take photos. We made it to Arches, Utah and took the three-hour drive up and back. Honestly, I enjoyed the drive TO Arches more than the drive THROUGH Arches. STUNNING. We drove along the Book Cliffs (Colorado National Monument) twice and were mesmerized both times. Sunset up there is a spiritual experience.
Jeff and I have been enjoying our cabin – we try to go every other weekend. No words are necessary to understand why we love this place. It is right across the road from Maggie, VA, just a 30-minute drive from Blacksburg, VA. Jeff fly fishes, photographs birds, and creates lots of outdoor chores for himself. I paint. And I nap.
Jeff remains in treatment for the protozoa. It can be exhausting at times, but he is sticking with it. Treatment is not easy, nor painless.
In early autumn, I had an eye infection that was quite painful (sobbing in the waiting room) and left my eyes permanently scarred and my vision permanently affected. It was a long week with a sad ending, but also a great sense of gratitude for what I do have.
In November, I had the best-looking blood smear I have had in eight years. Thrilling, and yet my fatigue remained overwhelming.
I tested positive for complete adrenal failure. The new meds are LIFE CHANGING. I don’t need a nap every day. I can work almost full time now. And I sleep well almost every night. I have gone off three meds as a result of this diagnosis and treatment.
We had two visitors this year.
Becca Moses is in treatment with Dr. Mozayeni. She lives in Tennessee, so she stays with us when she has her appointment. She also paints with me and is the super duper organizer of my painting mess.
Chef Lorraine came to see us this past autumn after the two hurricanes hit Turks and Caicos. Her stay her gave her a respite and time to prioritize what she wants and how she wants to achieve it. Her presence in my life is healing in context, content, and aura. The best part was she taught me some really awesome cooking secrets. And now, this woman (me, SHARON), CAN COOK some pretty damn awesome meals!!!! And healthy ones to boot!
A year ago, I had just completed publishing two books, The Best Part of My Day Healing Journal and Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners. I’m glad that’s done! They are still for sale on Amazon. We have received tremendously positive feedback on both books, for which I am grateful.
I still have notes for a book I am considering writing entitled 26 Days and Nights – My Final Conversations with Dad. But the grief remains too raw as of yet. I am still amazed by and grateful for the gifts Dad gave me in those final days. He took leaps into realms I never thought he would go. While it was a time of great sadness, the love our family shared and witnessed was one of God’s many gifts during that month. Dad’s spirit is with me often, especially when I am painting.
I also was gifted with the idea of another book – just a hint: Rise, Move Forward, and Conquer. That’s all you get for now
Wrapping it Up
I’m not sure how to sum things up this year.
I still find myself thinking Dad is alive for a moment and then having to reprocess everything.
I find myself creating revised relationships with family members and finding solace in their authenticity.
I find myself cooking and loving it. Loving that I can finally create healthy, tasty meals.
I find myself falling deeper and deeper in love with Jeffrey. We have been through innumerable moments that cement our love in the deepest foundation I never thought possible.
I find myself saying less and painting more – painting seems to be my primary method of communication now. I can’t find the words right now. But I can find the color, the pattern, the mixture, the texture, and the emotion.
I go with and do what I can, knowing God has a plan.
I need to mediate more and listen to the butterfly whispers.
Love, Sharon & Jeff
firstname.lastname@example.org or email@example.com
I am reprinting this chapter from our book, Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners because i think it might help you develop your own Christmas list and your own “how to survive the holiday” ideas . . .
Miscellaneous Aids During Treatment
I used to believe when I got sick, I could go to the doctor, get a prescription, take a pill, and I would be healed of whatever ailment had inhabited my body. I used to believe a holistic approach to health and well-being was a nice thought, a possible avenue, but something that mostly appealed to those “hippies” or those with a lot of money to throw around.
I used to believe organic food was another way to rip off the customer at the checkout line.
And then I got the Lyme Disease diagnosis. Dr. Mozayeni, with his credentials and research strengths, advised me at my second appointment to go “organic.” Some of my blood work came back showing I had significant levels of arsenic in my blood.
I completely understand the panic and desperation late stage cancer patients’ experience. I found myself willing to try almost anything to see if it would alleviate my pain and fatigue. I believe in traditional medicine and treatment protocols, but I also now believe a holistic approach is the only way to heal from a systemic, chronic disease.
We have gathered a list some patients have found helpful. What worked for some individuals may or may not work for you. And works now may not work six months from now. The point is, if you want to try it, go for it. People are constantly asking me for the “secrets” to healing. There are none. It’s a combination of ingredients unique to each patient.
These are items that were simply helpful during the healing process. They are listed alphabetically.
Attitude – A positive attitude is a critical element in my recovery. Even when I’m not feeling well, I know it will get better. At the most difficult and fatiguing phase of therapy, I mentioned to Dr. Mozayeni that I was trying to accept “the new normal” of what I thought my life would be like. I was depressed. He paused, and leaned forward a bit, lowering his voice.
“I need you to do something for me,” he said softly. I nodded my head.
“I need you to aim for no less than a complete cure,” he continued. “I know I can heal you, but I need you to believe that I can heal you.” Dr. Mozayeni’s words morphed me into the Energizer Bunny, giving me a new mantra to recite each day.
I printed out “I am aiming for no less than a complete cure” and taped the paper above my desk and on my bathroom mirror as a constant reminder of our ultimate goal. Attitude is key in healing.
Caster oil heat pack – One of the most significant possible benefits of castor oil is being a stimulant to the lymph system, improving lymphatic flow and increasing the activity of the cleansing of tissue.
Coconut oil –
Internal use benefits include:
1. cooking as a dairy free replacement to butter.
2. In green smoothies to boost metabolism and reduce inflammation
3. Oil pulling with coconut oil and a drop of oregano oil helps improve gum health
4. Use as a replacement for vegetable oils in any recipe
5. Mixed with catnip, rosemary, or mint essential oils as a natural bug repellent
6. When taken regularly, it can help fight candida
7. Can boost circulation and help those who often feel cold
8. Ingesting coconut oil daily can help with allergy symptoms
9. A tablespoon melted into a cup of warm tea can help soothe a sore throat
10. It can increase absorption of calcium and magnesium
11. Internally as part of the protocol to help re-mineralize teeth
12. To support healthy thyroid function
13. Its anti-inflammatory properties can help lessen arthritis
14. Coconut oil helps digestion and may fight intestinal parasites or yeast
15. A tablespoon taken before each meal can help improve digestion
16. Can be taken in warm ginger tea to sooth heartburn or nausea
External use benefits include:
1. Body lotion – helps relieve eczema, psoriasis and skin sensitivity
2. As a homemade deodorant
3. As eye-makeup remover
4. Topically to kill yeast infections
5. A tiny dab on the hands and then through hair will help relieve dry brittle hair
6. Rubbed on lips as a natural lip balm
7. On feet to fight athlete’s foot
8. Rub inside your nose to alleviate allergy symptoms
9. As a natural shave cream and aftershave lotion; again for those with skin sensitivities
10. Can be used to speed healing of fungal infections when taken internally and used externally
11. By itself or with baking soda as a naturally whitening toothpaste
CPAP and BiPAP machines for sleep apnea – This is one of those things that is good to rule out. The difference I felt after getting a BiPAP machine was remarkable. Part of my fatigue was definitely due to sleep apnea. I had the initial sleep study done AT HOME with a device you wear on your head (VERY SIMPLE). My sleep specialist told me the chronically ill patients he sees have a greater incidence of central sleep apnea rather than obstructive sleep apnea. Central sleep apnea occurs because your brain doesn’t send proper signals to the muscles that control your breathing. This condition is different from obstructive sleep apnea, in which you can’t breathe normally because of upper airway obstruction. Central sleep apnea is less common than obstructive sleep apnea. But I am told by Dr. Mozayeni, who has researched brain blood flow in sleep apnea, that the sleep apnea may be related to small vessel disease from inflammation. The inflammation in small vessels likely disrupts blood flow and injures the neurons of the brainstem controlling respiratory drive and muscle tone. This is likely the connection between chronic illness and sleep apnea – although the exact mechanism has yet to be proven and will likely be shown to be more complicated than we presently think.
Deep Breathing – When experiencing these vital revelations about the mind body connection, everything seemed exponentially magnified in intensity of light, sound, and touch. I felt like I was on a rocket ship with no space suit; trying to hang on for dear life. The intensity was at times overwhelming for me. I had some difficulty handling the intensity of emotions and thoughts coming through me. My EMDR therapist helped me calm my body and my breath. It slowed the information assimilation and processing for me. It’s called 478 breath – http://www.drweilonhealthyaging.com/hya/ecs/a/video.html
Detox baths – I don’t know how much they help medicinally, but it is a good time for me to meditate, relax, and soak up some positive energy. Make sure to rinse everything off after a detox bath!
Dry brushing – (www.iherb.com/Earth-Therapeutics-Massage-Brush/21480?at=0) Dry-brushing is supposed to help with the detoxing process. It helped my skin hypersensitivity and intense itching during herxes. Dry brushing exfoliates dead skin. Since dry skin brushing increases the circulation to the skin, it encourages your body’s natural discharge of wastes especially aiding drainage of your lymphatic system whose job it is to remove toxins from the blood and other vital tissues. Treating your skin in this way can also eliminate clogged pores and help your skin to absorb nutrients while aiding in proper excretion of metabolic wastes. Additionally, nerve endings in the skin also become stimulated and help to rejuvenate your nervous system.
eReader (Nook / Kindle / iPad) – at one point, I could not turn the pages of the book because my thumb joints were so painful. An electronic reader allows me to highlight, carry many books at once, and not have to turn pages in a box small enough to fit in my purse.
Grab Bars – My husband installed handicap grab bars for me in the bathroom. The shower was one of the most dangerous places for me. I had trouble keeping my balance while standing, so having the grab bar to hang onto was reassuring. I often didn’t pick up my feet enough to get over the tub rim (due to peripheral neuropathy) and can trip too easily. By hanging onto the grab bars, even if I don’t pick my foot up enough, I can prevent a bad fall.
Grabber – (http://www.amazon.com/Ettore-49036-Grip-n-Grab/dp/B001B13PC2/ref=sr_1_1?ie=UTF8&qid=1453922855&sr=8-1&keywords=grabber) or (http://www.amazon.com/Duro-Med-Aluminum-Reacher-Grabber-Magnetic/dp/B0009STNME/ref=sr_1_4?ie=UTF8&qid=1453922855&sr=8-4&keywords=grabber) – I call it the Grabber. Lower back pain often makes bending over for anything painful. I use the Grabber for picking up anything and everything. It’s also good for reaching behind the dryer for those elusive single socks.
Green smoothies and the Vitamix (www.vitamix.com) – My Lymie friend Dan told me he was drinking green smoothies in the morning; they were making a significant difference in his energy levels and were supposedly helpful with reducing inflammation. I said, “If it doesn’t taste good, I don’t eat or drink it.” Dan gave me the recipe, and Jeff bought me the Green Smoothie Revolution (www.amazon.com/Green-Smoothie-Revolution-Radical-Natural/dp/1556438125) book for more recipes. I also found it helpful with reducing my chocolate cravings. My favorite green for the smoothies: kale. Yes, you need the Vitamix in order to do it right. It will make all the difference. I have also heard the Ninja Ultima is a good alternative to the Vitamix (http://www.ninjakitchen.com/ninja-ultima-blender/).
Heating pad for end of the bed – (http://cozywinters.com/shop/bed-foot-warmer.html) Helps keep my feet warm in the winter – especially important for peripheral neuropathy patients. It is different than a regular heating pad and better! One can also use an infrared lamp similar to ones used by acupuncturists.
Hobbies – I did a lot of reading during treatment, and not only about Lyme Disease. I read for FUN. It took my mind off reality. For many months, brain fog prevented me from reading anything ‘significant.’ So the lighter material made it easier to maintain this hobby. I was already an avid knitter and needlepointer; I actually had to give them up for awhile because the repetitive motion aggravated my joints, but I picked up projects whenever my body allowed.
Hot tub – Jeff liked it for helping to relax his muscles, a good time and place for meditation as well. If you have skin issues, be careful, as chemicals can sometimes irritate. The bromine may compete with iodine in your system so be sure your iodine intake is adequate.
Intuition – Listen to it; follow your gut.
Laughter – Hours and hours of “Whose Line is it Anyway?” and “Big Bang Theory” worked best for me. Laughter heals. When I asked fellow Lymies for their suggestions for this list of practical aids, many of them stated, “Laughter is the most important.” Numerous studies have shown laughter releases endorphins. And that can only make one feel better.
Meal planning – A game changer for me was signing up for the monthly program of nutrition counseling and meal planning at www.chroniclymenutrition.com. Creator and owner Robin Shirley provides a full meal plan and schedule and even the shopping list. She explains why it’s important to eat various foods and how they can impact the healing process. Robin took the thinking out of food preparation for me and I sorely needed this. Her program does much more than simple meal planning, but that was the big attraction for me.
Meditation – I still struggle with this one. I have tried many different types of meditation, some more successful than others. My “mantra” to you is to keep trying until you find something that works. And some types may work for a while and then you may need to adjust. The important aspect of this is to find a way to get your body and mind quiet for a period of time each day.
Naps – I take them often. NOT taking a nap was detrimental to my health. Rest is an essential part of the healing process. I cannot emphasize this enough.
Nutritionist – Initially, I only needed a few sessions with a nutritionist after Dr. Mozayeni’s suggestion to go gluten and dairy free. I didn’t exclude them from my diet completely, but I found reducing my intake of gluten and dairy products significantly improved my intestinal tract problems. I needed help from a nutritionist to show me options and alternatives. She taught me how to make toasted kale disguised as potato chips. She introduced me to dehydrated bread. She also took me through a few grocery stores to familiarize me with healthier options. I still need more sessions with a nutritionist to get me through the “no sugar” portion of my life – one step at a time.
Personal Trainer – It was almost two years into treatment before I could do any sort of exercise. When I re-started, I was terrified of re-injuring myself. I found a trainer who was previously a US Army Master Fitness Trainer. She helped injured servicemen regain full physical mobility. It’s important to find the right match and to find someone who is educated and experienced so they don’t let you injure yourself.
Pill Boxes – (http://www.amazon.com/Compartment-Pill-Organizer-DEEP-Inch/dp/B000E13BVA) I used these, making my own label for each section: Before Breakfast, Breakfast, Before Lunch, Lunch, Before Dinner, Dinner, Bedtime, 2 AM. So I needed two boxes for each day. The 1-inch deep ones were big enough to hold all of my pills. I took approximately 40-50 pills daily during treatment. INSERT PillBox1 and PillBox2 photos
Progress Journal – In a simple Excel spreadsheet, I recorded the date and the event of anything significant for me. I referred back to this spreadsheet often, especially during herxes, to remind me of the progress I had made. I included things like “made the bed,” “started putting on make up,” and “shaved my legs 5 days in a row.”
Rest – I cannot emphasize this enough. I live in an area of the country where “downtime” is not encouraged. And this was probably the most difficult element for me to maintain during my treatment. I am convinced rest is an essential part of my recovery. Notice I wrote “Naps” and “Rest” as two separate items. That is because they are two separate items. You need BOTH. And they are ESSENTIAL to HEALING.
Soap – My skin started reacting to almost anything I put on my skin. I stopped wearing makeup. I had to find a soap that didn’t cause more skin breakouts. I use fragrance free unscented soap and haven’t had an issue since I started using it. (https://www.etsy.com/people/teresagayers). As I have healed, I have started being able to tolerate some soap with essential oils included. I get those from I get those from https://www.etsy.com/shop/KikisHopeSoaps and https://www.etsy.com/shop/BadRickSoaps.
Stick with the Winners – Connecting with others who have the same disease is a huge aid during treatment. It is important to choose those “others” carefully. Staying positive is a key element of a successful recovery. I chose to surround myself with those who exuded compassion, genuine positive energy, humor, and fierce determination. We fed off of each other’s energy throughout our respective treatments.
Stretching – (www.simplefitnesssolutions.com/stretch.htm). I stretch in bed before I get up, I stretch sitting on the bed, standing in the shower, drying my hair, putting on my clothes. I stretch in my chair at work, on the couch at home. I stretch whenever and wherever possible. The strap is helpful when muscles are really tight.
Trigger Point Injections – I received trigger point injections of Marcaine and Toradol. These are NOT steroids. Toradol is an anti-inflammatory. Marcaine is local anesthetic. These injections gave me short periods of being pain free, something I had not experienced in decades. I had no idea the exhaustion chronic pain causes until I had none for those 24 hours.
After the first two injections, I got up from the exam table and realized I had moved from a prone position to standing up without any pain. The smile that grew across my face was the size of the Cheshire cat’s. I leaned over to pick up my jeans, bending straight and forward, no favoring of either side. I giggled. I stepped each leg into the jeans easily. More giggling. I bent over and picked up my sneakers. It felt as though I had “gotten away with something.”
Dr. Mozayeni came back into the room and asked, “How do you feel?”
I sat in the chair and lifted my right leg with absolutely no pain. I repeatedly stood up and sat down, straight and balanced with no hesitation. When standing, I bent over and touched the floor with my hands, again, with no jerky movement, and absolutely no pain.
Completely overwhelmed with gratitude and excitement, I could only utter, “This is mondo-bizarro.” Dr. Mozayeni chuckled in retort. I walked out of his office looking like the cat that ate the canary. I did not stop smiling for the rest of the evening.
Most of the above are items I never would have considered before my illness. But when we want to heal, willingness becomes key in our attempt to find what works and what will keep us on the path to healing. I found many of the above items helpful in my recovery. I hope you do as well.
Five years ago, Stephen had surgery on his shredded collarbone the day after Thanksgiving. He was miserable that entire holiday.
Another Thanksgiving, Joey had strep throat and Jeff stayed home with him instead of joining the rest of the family. We brought leftovers, but . . .
One Christmas, a relative’s oven broke and the turkey was not cooked completely – some guests didn’t realize until they had eaten some.
On our wedding day, the airlines canceled our flight and we had to rush to the airport to catch another flight. We were in the back of the limo eating our dinner with our fingers b/c the caterer forgot to include utensils. We spent hours in the Tampa airport trying to get to Ft. Myers.
The Christmas before Stephen was born, I was on bedrest for ten weeks – I could only get vertical to shower every other day and to use the bathroom.
On New Year’s Eve, 2014, Jeff’s dad died at 12:30 in the afternoon.
On Good Friday, 2016, Dad died at 5:55 am.
Not all holidays have good memories attached to them. Some can develop into funny stories later on (like our wedding day mishap). But some don’t. Sometimes a big family argument breaks out; sometimes you wonder why you are even surrounding yourself with this group of people.
It’s all ok.
A wise friend said to me, “Lower your expectations; raise your acceptance.”
So Stephen was miserable that holiday. He was alive and his collarbone healed (with the help of a few screws and a plate).
Joey healed from the strep throat.
I can’t bring back our parents, but I can tell funny stories about warm memories I have of them. I can hang ornaments on my tree that remind me of our loved ones.
Life goes on and we do the best we can with what we have.
Today, I went to a fancy restaurant with a slipper on because I think I tore a tendon in my heel yesterday. I could barely walk. But I went and I had fun.
Stephen wore one of Dad’s suit jackets to today’s festivities. In a weird way, it made me feel as though Dad was a part of the celebration.
Actually, I know Dad was there. I could feel his spirit, his joy. Dad LOVED family meal times. He LOVED family gatherings with food. And today, even though he has died, his soul still rejoices when we gather for special occasions.
Both of my sisters were there, Gayle and Ken came in from Colorado for the weekend. It’s been awhile, so it was good to see them both.
And now, it’s food coma time. My foot still hurts a lot, so I’m taking ibuprofen and keeping it elevated and iced (thanks to hubby Jeffrey on the ice factor).
I’ve shed a few tears this afternoon, missing Dad.
At the restaurant, Stephen was cutting Mom’s meal (she is a stroke survivor and has a tough time with cutting). The waiter very quickly, quietly, and efficiently took the plate, and cut everything within seconds so he could then serve Stephen his plate.
That moment of kindness, of compassion, of whatever you want to call it, brought tears to some of us at the table.
It’s the little things that make us miss Dad the most – like when he used to cut Mom’s meals for her.
Yes, I think I need a nap. I am tired from the foot pain and from the pain of grief.
Indeed, I am grateful for many things. I have made gratitude lists for years on a daily basis as I believe gratitude to be the core of recovery and thriving.
I am also keeping it real, especially for those I know who feel alone, abandoned, threatened, afraid, unsure, unloved. I do not want to deny their perception of where they sit today.
Know this: in the past two years, I have found my times of waiting, of aloneness, of uncertainty, of fear, of uncertainty . . . these times are the periods when God is preparing me for something far greater than I could have imagined. So I wait with faith and hope.
I wait knowing that when I am ready, God will bring me to the next phase, the next step. And that next phase is going to be amazing.
We have had quite a few new people sign up for our blog postings so I thought I would just touch base.
I thought I would let you know that we give away a copy of Lyme Savvy each month to a lucky winner on Facebook in the Lyme Patient Raffle group.
Lyme Advise is also currently doing a give away: https://www.facebook.com/lymeadvise/.
I don’t know if you heard the latest, but Dr. Mozayeni has accepted a position on the ILADS.org board and he will serve as President starting in 2018! Exciting!
In the past few weeks, I have talked with several newly diagnosed individuals. Three of them had never heard the word “co-infections.” Thus, they had never heard of Bartonella, Babesia, Erlichiosis . . . and the list goes on.
It can be frustrating to educate people about Lyme itself. It can be doubly frustrating to bring them up to speed about the co-infections as well as Lyme. The amount of mis-information about these diseases is overwhelming.
I encourage each Lyme patient to find a Lyme Literate Medical Doctor (LLMD) to help you navigate your way to health. And work with your LLMD as a team. One thing that drives me insane: when a patient has an appointment with their LLMD, they develop a new plan for treatment, and then the patient goes on line and asks other patients their opinion of the plan. If you still have questions about your plan, ASK YOUR DOCTOR! Do NOT ask a thousand people who do not have a medical degree, are not familiar with ALL the details of your history and current state. If you feel you can’t work with your LLMD as a team, find a new doctor.
In Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners, we cover many of these co-infections. I encourage you to read it.
A note to the new readers: I originally tested positive for Lupus and Lyme. Better testing from Galaxy Diagnostics showed I was positive for Bartonella. I was then treated for Bartonella. And after that treatment, my next Lupus and Lyme tests were negative. It took a smart physician to figure out what I had and how to treat it.
8 Years Ago Today: The First Appointment
I lied on the 22-page “Complete History Form” Dr. Mozayeni asks all patients to fill out. I suspected if I revealed all of the symptoms I had experienced over the years, he would surely think I needed a psychiatrist rather than an LLMD. No one has that many symptoms without being a hypochondriac; even I had to begun to believe this. I focused on my major symptoms and denied the less compelling ones.I was very nervous at my first appointment with Dr. Mozayeni. Partially, because I couldn’t believe I might actually have Lyme Disease. If I did have Lyme, I didn’t want to have Aunt Betty’s outcome. And I didn’t want to have one more physician looking at my paperwork and giving me another incomplete, inaccurate diagnosis. My anxiety had reached a new peak.
It wasn’t like getting a splinter in my finger. I couldn’t remember getting the splinter. I couldn’t see the splinter. I couldn’t get a pair of tweezers to excise it. I knew I felt pain and it kept getting worse. But there was no red, swollen, site with puss coming out. There was nothing to show a physician except my own perception and recording of symptoms. Even some of my lab work was faulty, skewing the puzzle more so. For years, I watched and listened as physicians provided little explanation and less treatment for pain that was increasing sometimes exponentially. Over those years, my anxiety increased, my defensiveness grew.
I talked with other people, researched the Internet (not necessarily the best idea), desperately seeking answers. When I did receive a diagnosis, I thoroughly researched that condition, becoming as expert as a non-science major can become. But when I met new physicians and explained previous conditions, my knowledge base was met with skepticism and obvious discomfort. I found most physicians did not appreciate being challenged by laypeople. I discovered an ugly dimension in medicine.
When the physicians could not come up with a plausible diagnosis or effective treatment, they did not like being put on the spot. They did not care for being challenged with the possibility they might be wrong in their diagnosis. They furrowed their brows, reinforcing their rejection.
In his book How Doctors Think, Jerome Groopman points out “physicians, like everyone else, display certain psychological characteristics when they act in the face of uncertainty. There is the overconfident mindset: people convince themselves they are right because they usually are.” (p. 150).
Groopman adds, “Specialists in particular are known to demonstrate unwarranted clinical certainty. They have trained for so long they begin too easily to rely on their vast knowledge and overlook the variability in human biology.”
Here I was, thinking, Ok, that diagnosis wasn’t right, so what else could it be? I was ready; no, by that time, I was desperate for another possible diagnosis. But the physician was still stuck on the fact that I had informed him he was wrong. He did not like it one bit. Instead of saying, “Let’s move on to the next round of possibilities,” he suggested counseling. I received this suggestion from more than one physician.
My frustration compounded with each visit. I had to prepare and brace myself for each physician, to explain why I knew so much about various conditions. I had to emphasize the three most exasperating symptoms to have them even acknowledged. I only had about 11 minutes for each visit and I wanted as little of the time spent in a defensive mode as possible. The urgency and stridor in my voice increased.
I eventually wondered if my desperation for an accurate diagnosis was appearing as Munchausen syndrome – a type of mental illness in which a person repeatedly acts as if he or she has a physical disorder when, in truth, they don’t have the symptoms. They act this way because of an inner need to be seen as ill or injured. They are even willing to undergo painful or risky tests and operations in order to get the sympathy and special attention given to people who are truly ill. I definitely did not want to be seen as a candidate for Munchausen.
I didn’t have an open wound or broken bone. I had migrating pain, tenderness. I had overwhelming, incapacitating fatigue. My hands and feet were numb and cold. I would simply fall. I couldn’t walk down the hallway in a straight line. My husband jokingly called me “Ricochet Rabbit.” My knees buckled for no known reason. I cried in the morning from excruciating back pain when I tried to get out of bed.
Here was the truth:
I had an inner need to be seen as ill: first, because I was ill and, second, because no one was validating it in proportion to the amount of pain I was experiencing.
I had been willing to undergo painful tests in order to find an answer. I wanted my pain to stop. I was willing to go to any lengths to get resolution.
I remember seeing numerous specialists, giving them my thick file, showing them my spreadsheet of multiple diagnoses, many of which were auto-immune disorder related. No one put the pieces together. No one was reading the entire spreadsheet; no one until Dr. Mozayeni.
From the moment I arrived at his office I experienced something different from my other doctors’ appointments. I approached the private sign-in sheet sitting on an open counter. There was no sliding window for the receptionist to separate herself. I signed in and sat down in spacious chairs lining the walls against the deep blue painted walls. This room was rich in color, warm, comforting.
Abstract paintings added texture and depth, offering each person their own interpretation to the finished product. There was no right or wrong in this room.
When my appointment time arrived, Dr. Mozayeni came out to the waiting room greeting me warmly with an extended handshake and a genuine smile continuing past the introductions. He escorted me down the hall to his office, one corner filled with diplomas, fellowship certifications and class photos. I wondered which young student was him. Minus the white coats, it could have come from my own college era. We were not far apart in age.
His desk was sparse, more blank forms than ones filled out. In fact, the only file on his desk was mine. No distractions except the telephone and his MacBook laptop.
He opened the conversation by mentioning he had read through my file but he wanted to review my symptoms in a more thorough manner (more thorough than the 22 pages I had answered?).
Dr. Mozayeni went through the symptom checklist and bloodwork results very slowly, meticulously, often re-asking questions about the symptoms. I didn’t have the checklist in front of me, and I couldn’t remember which questions I had answered truthfully and which ones I had ‘minimized.’ About half way through, as he went through each section, developing his theory for diagnosis, Dr. Mozayeni started to explain the Bartonella disease process and how my seemingly unrelated symptoms fit together.
Dr. Mozayeni’s expression remained open throughout the two-hour appointment. This was a very different experience. His face indicated no judgment, surprise, or condoning. He made direct eye contact with me; his tone of voice was interested, calm, searching, genuine. He asked open-ended questions. His word choice indicated compassion, humility and understanding. His voice remained calm and clear. As time passed, my anxiety lessened. I would not have to be defensive or demanding in this appointment. I could simply tell my story and relay my observations and symptoms and let him process it from there.
“I have to assume the patient is telling me the truth,” Dr. Mozayeni later explained to me. “I have no reason to suspect the patient is lying to me. I have to take the data they give me and figure out how it fits into the system.”
Mainly, I was impressed by the amount of time he spent with me, the depth of information he gathered, and the clear intention with which he listened – really listened – to me.
From our very first meeting, I have been fascinated watching him. I have learned from him the way he views patients:
Each patient presents like a slide puzzle, a series of square tiles within a border, with one piece missing so the squares can be moved around but in a particular order; more intricate than a Rubic cube. Based on the patient’s symptom history and test results, Dr. Mozayeni moves the pieces around within the square until he can finally see the larger picture that illuminates once each puzzle piece is in its correct place. But in this slide puzzle, because the body is a series of systems working together, the individual puzzle pieces also change shape as they sit within the larger square. It’s a combination of a jigsaw puzzle, slide puzzle, and Rubic cube.
Dr. Mozayeni is a fix-it guy. He wants to understand how the body works in order the treat the problem.
He doesn’t want to treat only the symptoms;
he wants to treat the cause of the symptoms.
He wants to fix patients, not just make them feel better. He cannot stand the thought of people suffering when the problem is not fixed.
Because I already had some results from IGeneX revealing five positive bands, Dr. Mozayeni was able to start me on some medications immediately. He also changed my thyroid medication dosages and added vitamin supplements.
“I think with these changes, you will soon find yourself feeling about 20 percent better than you have been,” he suggested. He also ordered more blood work.
This first appointment was tremendously emotional for me. It was the first time in more than a decade I believed a physician was fully attentive; listening, collecting and evaluating data, and presenting a diagnosis that actually fit.
During my first visit, Dr. Mozayeni clearly (and thankfully, slowly) explained 22 pages and almost three decades of symptoms in a clear, concise, believable manner outlining the likely root cause of persistent symptoms in Lyme Disease and Bartonella.
He explained simply and clearly what had been happening to my body for almost thirty years; how each system was affected and had complicated the next set of symptoms that appeared.
To finally enter an office where there was no time limit, no judgment, no disbelief, no arrogance; well, it was simply overwhelming.
When I left Dr. Moayeni’s office two and a half hours later, I sat in my car and wept. I wasn’t crying because I found out I had the same disease that had killed my Aunt Betty years before. I cried because I was overcome with the most profound sense of relief I had experienced in recent memory; and the most amazing sense of honest, authentic acceptance. I no longer needed to ‘prepare for battle.’ I could be forthright and be believed. I could question and not be reprimanded. I could doubt and be reassured.
During my now 8 years with Dr. Mozayeni, and with my other physician encounters, I have learned no one will fight for my health more than I will. I have to know my numbers, know my meds, know what to ask, what to say, what to let go and what to demand. It took me decades to find the right physician. It was worth every step.
But it still remains my responsibility to be an active participant in my recovery. If a doctor says, “You don’t need to worry yourself about that,” walk out the door and get a new doctor who will treat you as a bright, equal, assertive patient.
I have always appreciated that Dr. Mozayeni tells me up front how and what he is thinking. There is no sugar coating. He is brave enough to admit he doesn’t have all the answers right now, but he also emphatically states he will keep searching until he finds them. And he does. I don’t want a doctor who placates me with false promises. I need a medical professional who is up front with patients and looks beyond the superficial for answers.
I mourn for a father lost, and i celebrate my husband who gave me a son.
I didn’t want children when Jeff Rainey and I married. I woke up one morning, turned over and said, “Honey, I want to have a baby.” He replied without missing a beat, “It’s a good thing I’m flexible.”
My teacher today reassured me that though I miss Dad greatly, he fulfilled all of his obligations here and did all God needed him to do. His life was complete. I trust in that knowledge. But it still makes me wistful. And it does not take away Mom’s pain which remains fresh and unsettled.
My teacher and I talked about the trip to Turks and Caicos – you remember, the #vacationofalifetime. She said, “Every time you think of that trip, you think of it as magical . . . ”
I nodded my head. We all do. We all believe it was a magical trip.
She shook her head no. “That, my dear, was Love. It was Love felt by every single one of you at one point or another during those seven days. For once, for just a little bit, you felt as though you belonged in that family in all ways. It wasn’t magic, Sharon. It was LOVE.”
A friend of mine is in Turks and Caicos right now with his own family. The first night, he sent me photos of the sunset and texted, “It’s your dad saying hi from T & C.” It made me cry, in a good way.
I suppose what I am trying to say in a convoluted way is that while these holidays are difficult for those of us who cannot be with our loved ones, to remember they truly are with us.
I know when i look at the empty chair, or when we holds hands to say grace, instead of looking for Dad, or Jim (Jeff’s dad), or Aunt Betty, or Troup, or Aunt Cherry, I simply need to close my eyes, take in a breath, and feel them.
I might feel a light brush on the cheek, or the sun shining a bit brighter, or a whisper of the wind. They are with us, always. All we need to do is call for them in our hearts or out loud and they come to us.
Spirit has reminded me often this week that when I need help, if I reach out and ask for help, my guides and my God will be there.
So I ask for solace and peace in missing two of the greatest fathers God created.
I ask for laughter for my husband.
I ask that we gather on Sunday to celebrate family.
And even more so, that we celebrate and live in LOVE.
No more worries about having to carry that heavy paperback book around with you! We have the Kindle version of Lyme Savvy now available! Just go to Amazon and it’s there!
If you already bought the paperback version on Amazon, the Kindle version is just $2.99! How’s THAT for a deal?!
I hope by now you have learned a few things about Lyme disease that you didn’t know thirty days ago. I hope you carry this information forward in case you find yourself infected or you hear from a friend who has a myriad of mysterious symptoms who can’t seem to get an accurate diagnosis.
I am happy to speak with anyone regarding this disease. Please feel free to email me at Sharon@sharonrainey.com.
Please consider purchasing our book, Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners.
From Galaxy Diagnostics
John (age 53) – Multiple Sclerosis
As a small animal veterinarian, John had daily contact with animals for more than 30 years. Starting in late 2004, he suffered numerous progressive neurological symptoms, debilitating enough that after being a runner for years, he faced the possibility of being wheelchair bound. His hands became numb, and he was constantly fighting fatigue. The buildup of symptoms over months prevented him from maintaining his practice and had him seeking medical help.
John consulted with numerous physicians and was ultimately diagnosed with Multiple (MS), for which there is no identified cause or cure. Physicians began to administer interferon treatment. The treatment may have helped, but John was still concerned. He knew, as a veterinarian, he had been exposed to numerous pathogens, and the MS diagnosis did not explain all of his symptoms.
John tested positive for Bartonella henselae. John was placed on a multi-drug oral antibiotic regime that lasted over a year. Progress was not immediate, but over the course of months, John regained significant use of his legs, had dramatically increased energy and saw a reduction of the neurological symptoms.
John’s quality of life improved to the point he was able to increase his work hours.