May has been proclaimed as Lyme Disease Awareness Month in the Commonwealth of Virginia (thank you Representative Barbara Comstock!). Each day, for 30 days, I am providing readers with information relating to Lyme Disease that you may not necessarily know, but hopefully, will find helpful.
My purpose for this is threefold:
My aunt died from complications of Lyme Disease in 2002 and I didn’t know much about it except that she had been bitten by a tick. There is much more to this story and I think others should hear it so they will know too.
I suffered from various ailments throughout my lifetime, having no idea until 2009 that 90% of them were all related – they were all symptoms of co-infections of Lyme Disease. I want others to know what those ailments were so they don’t have to wait decades to get the right testing, an accurate diagnosis, and effective treatment.
When I was initially diagnosed, I called someone in my community who was known for having the disease and would be able to connect me with the right resources. When I called her, she said she was very sorry to hear of the diagnosis, but she refused to offer me names of any physicians nor lend any support in any way. In fact, she pretty much hung up on me. What I discovered very quickly is that Lyme Disease is perceived as a psychiatric illness rather than a physical illness. It is a lonely road when trying to heal from this disease. From the moment my phone line went dead, I vowed never to let that happen to anyone I might run into who was in the same predicament I was in.
As a result of that short phone conversation, once I finished treatment for the primary infection I was suffering from (Bartonella), I spent the next five years writing a book with my physician, Dr. B. Robert Mozayeni, talking about the symptoms, accurate diagnosis, and effective treatment for Lyme Disease and its co-infections.
Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners is available on Amazon. It is a 624 page introspective guide into effectively healing from this disease and creating a healthy life on a physical, emotional, and spiritual level.
We are almost through our year of firsts without Dad.
With Valentine’s Day approaching, my heart sinks at the thought of Mom being alone.
Soon after Dad died, the three daughters agreed that we would still send Mom flowers for each event that Dad did. Just because he was dead doesn’t mean she shouldn’t get flowers anymore. Her flowers will arrive Monday.
In the past, my family didn’t gather for Valentine’s Day. Mom sent cards to the daughters, but dinner was for couples on their own. Not a big deal until this year.
For Jeff and me, we usually eat dinner together, but sometimes the dinner has included a child who might be at home with us, due to illness or maybe a recent breakup. We have viewed Valentine’s Day to be a day about love, not necessarily always just romance.
Jeff and I stopped going out for Valentine’s Day early in our marriage, frankly, because any meal we had in a restaurant, he could usually fix one better at home. When we stay home, our dinner is quiet, intimate, and most importantly, it is a leisurely time that we enjoy. No one is rushing for a second or third seating. I have always loved it this way.
So for this year, I asked my husband, who is the most romantic man I’ve ever known, if he would give me the greatest gift I could ask for.
I asked Jeff to come to Mom’s with me on Valentine’s Day and cook dinner for us both. Mom’s diet is a bit restricted, so going out would probably not be a great option. Plus, I don’t want her to see all the couples celebrating. I feel like it would be shoving the loss in front of her. We will bring the food and pots and pans and cook at Mom’s this Tuesday. We will make her a healthy, delicious, colorful meal. And we will eat leisurely.
I thought I would bring some of the videos she hasn’t seen yet from our childhoods that we have been transferring onto DVD. Dad can’t be there in person, but he will be with us in spirit and I thought it would be good to laugh at the times we shared together.
It is about the love, after all. But you already knew that.
And if you, too, are grieving and not looking forward to Valentine’s Day, there is a great blog called What’s Your Grief? Read this week’s blog: http://www.whatsyourgrief.com/grief-and-valentines-day-2014/
Reminder – If You Haven’t Registered Yet!
Taking Control: Focusing Through the Fog
Wednesday, Feb 1, 2017, 3-4 pm (EST)
Dr. Bob Mozayeni and Sharon Rainey will discuss ways to overcome the challenges faced by both patients and physicians when trying to diagnose chronic illness, set out a plan of treatment, and effectively manage care.
This is especially confounding when patients are dealing with the cognitive impact and “brain fog” so often associated with chronic illness.
“Taking Control: Focusing Through the Fog”
Dr. Bob Mozayeni and Sharon Rainey will discuss ways to overcome the challenges faced by both patients and physicians when trying to establish the nature of underlying causes of chronic illness, set out a plan of treatment, and effectively manage care. This is especially confounding when patients are dealing with the cognitive impact and “brain fog” so often associated with chronic illness. They will draw on a variety of issues discussed in their new book, LYME SAVVY.
Date/Time: Wednesday, February 1, 2017, at 3 pm (for 1 hour).
About These Presentations: This discussion is part of our exciting new program to provide our patients with the information they want and need to know, to help them get better faster. These patient education webinars will be paired with corresponding programs geared toward physicians and other health providers to foster mutual understanding of the issues and help them collaborate with us in your care. In the future, we will cover advances in the treatment of Bartonella, Lyme Disease, Mast Cell Activation Syndrome, and more.
We hope you can join us. Please click the link below to register.
Click Here to Register at GoToTraining
Webinar limited to first 50 registrants only! Sign up NOW!
LYME SAVVY is a unique collaboration between a patient and doctor, offering important insights into the patient-practitioner dynamic that you need to know to live well while dealing with the disease…and move forward toward recovery. This book is rich with information, wisdom, and guidance. For more information go to LYMESAVVY.com.
Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners is NOW FOR SALE! You can order directly from https://www.createspace.com/6177142.
Enter the discount code L37GVXBH to receive $4 off the retail price! This is valid only for the month of December!
If you pre-ordered a copy, it will arrive in about two weeks’ time. Email me at firstname.lastname@example.org if you have any questions.
I’M SO EXCITED!!!!
Lyme Savvy offers important insights into the patient-practitioner dynamic that you need to know to live well while dealing with the disease… and to move toward recovery.
In this 624 page volume, rich with information, wisdom and guidance, you will find:
• new insights into germs that contribute to chronic illness and small vessel disease;
• observations and considerations to help you and your physician rise above the disease process;
• stories of patients who have struggled and improved;
• important discernments about tests to help diagnose your condition and related contributing
factors – tests that many physicians do not currently utilize;
• an understanding of the elements of a successful patient-physician working relationship;
• therapies that may help relieve pain and suffering;
• frank discussions between a Lyme sufferer and her physician, a renowned specialist in the field of Lyme diagnosis and treatment;
• powerful, practical suggestions to support you in daily living and improve your quality of life.
Lyme Savvy shines a bright light into a world of misinformation, in which sufferers have been stumbling, desperately grasping for help and answers.
In these pages, they may finally find what they are hoping for.
It’s a big deal when someone like me gets email from famous, talented, wise authors writing me and telling me what a useful tool this healing journal is.
So imagine my glee when THE Dr. Bernie Siegel wrote me several emails telling me how much he loves “The Best Part of My Day Healing Journal”?!
He said to feel free to tell people he likes it and believes it to be a helpful healing tool . . . . so I’m telling you!
“When you experience joy, happiness and laughter you are more likely to be healthy, recover faster from and resist illness. Recording those positive emotions, recalling them in a journal, is a positive step of therapeutic value. The Best Part of My Day Healing Journal provides the format and fodder for such healing steps.” – Dr. Bernie Siegel (www.berniesiegelmd.com)
Feel free to pass this around! The healing journal makes a great holiday gift for anyone dealing with a chronic or major illness. I’m actually finding it quite helpful for my grief as well.
https://www.createspace.com/4567483 – use the discount code N2GX4YBD to receive $4 off the retail price!
An acquaintance sat across the table from another woman. They are both life coaches. They had previously chatted on the phone and were now meeting IRL. One asked the other to tell her about herself – sometimes the hardest and most pointless question ever. She gave her an off the cuff list of what she values in a way to describe who she is. You can read her post here. And she challenged others to do the same.
Here are mine (Sharon Elaine Williams Rainey):
I am a feeler – I feel my own emotions intensely, unceasingly, and without organization. I feel them as they come, big, small, trivial, life changing.
I am an empath – I feel everyone else’s feelings too. With no filter, no order, and no directions.
I am writer – I have an incessant need to process my feelings through writing. And I have an incessant need to share my writing with others. The words swirl in my head endlessly until I write them down.
I think in words. Pictures are hard for me. Auditory processing is almost nil, so if you want me to remember it, you better write it down and send it to me in an email – because my memory is also shitty.
I am a connector. I never seem to know THE some one or thing, but I usually know someone who knows THE some one or thing.
I despise conflict. I want everyone to get along. We don’t have to agree, but I demand everyone around me be respectful. If we don’t have respect, we don’t have much else.
I am a recovering addict – I have 28 years’ experience of living life on life’s terms, which is still a challenge for me. So I still attend 12 Step meetings to help me remember that the only person, place or thing I can control is ME.
I am a learner – I am always looking for the lesson in my daily life. I like to try to learn things the first time around so I don’t have to review them over and over in new situations.
I believe that some of my life lessons relate to authenticity, suffering, compassion, connecting, and healing.
I am authentic – ask me how I am and I will tell you. I will tell you my struggles, my challenges, my gratitude, my grief, my quirks, my aspirations, my passion.
I am honest – I do not lie. I try to make things right when they might be wrong.
I have an intense compulsion to connect with others – I despise small talk. Don’t discuss the weather or politics (Lord, have mercy) with me. Instead, tell me your dreams, your passions, your goals, your secrets. Tell me what you love, how you love, why you love. Connect with me. REALLY CONNECT.
I believe in independence – having the right to do what you must, where you must, when you must, without others’ interference and without interfering with others’ rights.
I believe in kindness – genuine kindness, to everyone around me, big and small, worthy and “unworthy” (they usually need it the most).
I believe in community – in helping one another wherever and whenever possible, so long as it is not to my own detriment. That last part is something I just learned in the last decade.
I believe in God, Jesus Christ, and the Holy Spirit. I believe in Heaven.
I was a victim. I am a survivor. And I am determined to thrive on a daily basis.
How did you originally connect with Robin and the Take Back Your Health Conference?
Robin was introduced to me when she was still in high school and just starting this journey. She had made the connection to healing from Rheumatoid Arthritis and food, and she wanted to share her experience, strength and hope with me.She led me to healthy eating. She also showed me great compassion. I was in the roller coaster part of the healing, a lot of ups and downs. One afternoon, Robin brought me an entire meal she made herself. And it was amazing. It was such an act of love to me. Not only did the food help me heal, but her love and compassion were strong healing agents as well.
What will you be sharing about at the upcoming Take Back Your Health Conference?
I will be sharing about the importance of healing the emotional and spiritual wounds that we hold from traumas in our life.
Our doctors can only do so much, and they focus on the physical part of healing. A great doctor will help with the other aspects, but it is usually only the patient who knows the triggers, the traumas, and the willingness to find possible resolutions.
If you don’t mind diving right in, can you share a couple of your main symptoms / struggles over the years?
I was sick for 30+ years. If there is a symptom, I had it. It wreaked havoc throughout my entire body including stomach ulcers, a tooth killing itself, lower back pain, migraines, lipomas, joint stiffness and pain. I felt like a stone statue, or the Tin Man from the Wizard of Oz. It also included bizarre things like itchy ears and vivid nightmares.
Is there one thing that you’ve learned from Robin or Take Back Your Health events that has really stuck with you?
Eating is key to healing. An anti-inflammatory diet is mandatory for healing.
What are a couple of lifestyle tweaks/habits have made the biggest difference for your health?
Eating organic food is essential – I had arsenic poisoning when I was first diagnosed. It was from eating commercial chicken. (http://www.iatp.org/files/421_2_80529.pdf)
When I changed to eating organic food, my arsenic levels plummeted to zero. I was NOT a believer in eating organic until I saw this change in my heavy metal testing.
REST is probably the second most important element of my healing. I had run myself ragged. Now, I limit my daily activity, making sure I get some rest every single day. By rest, I mean, getting my head level with my heart for at least 30 minutes each day.
Lastly, I would say asking myself two questions for every activity I participate in: “Will this help me heal?” and “Will this bring me joy?” – Obviously, this can’t apply to doing laundry, but I was amazed and relieved by the relief I felt when I could say NO to invitations in which I realized those activities would not help me heal, nor would they bring me joy. It’s an easy way to find the right priorities in my life.
If you could give a little advice to someone who is recently diagnosed, or just beginning their journey to take back their health, what would it be?
DON’T GIVE UP. The journey to an accurate diagnosis and treatment may have taken awhile, but no matter how long you have been sick, you have the ability to heal and to reclaim your health and life!
It’s an incremental process, and sometimes overwhelming, so do what you can, when you can. Eventually, it will come together for you and you will find what works. Stay open to all possible healing modes.
What’s your favorite “healthy” food?
My latest favorite has been watermelon smoothies with a lime and some kale. It’s a great pick me up for that afternoon slump.
What is your “philosophy” on healing?
My answer is VERY different than it was seven years ago when I was initially diagnosed. And I think that’s why I finally started healing. It’s a multi-level, multi-stage process that takes time, willingness, openness, and a myriad of methods.
I also found that healing comes in many forms, including complementary therapies, lifestyle changes, the people in my life, the boundaries I set. It’s not just a matter of taking a pill.
Yes, I found an incredible physician who finally got my body healing at a physical level. But he also introduced me to emotional and spiritual questions that led me to healing at a cellular level. I know it sounds mysterious and a little weird, but when I started addressing those emotional and spiritual traumas and myths, I started healing from the core of my soul. And that has made all the difference.
Thank you for your openness and for sharing so much with us, Sharon!
Learn more from Sharon:
We are excited to learn from Sharon, live at the upcoming Take Back Your Health Conference.
Join us! Learn more here: www.TakeBackYourHealthConference.com
Photos courtesy of Sharon Rainey
I’ve had an ear infection for almost a week now. If you have had one, you understand the pain. Today, I feel drained, exhausted, sore, and bummed. I’m sick and tired of feeling sick and tired. I return to the ENT physician tomorrow for a re-check.
But this experience is a good reminder to me of the importance of “full participation in the healing process.”
It’s not just what the doctor prescribes us that will heal us. We, as patients, have to do our part as well.
That includes the obvious
– follow doctor’s orders
– Don’t do anything you think your doctor (or family) might not consider good for healing
– Eat healthy foods
– Laugh for at least 30 minutes each day
And what I consider to be most important . . . . find a best part of your day.
Now, like I said, not all days are good days. Some days are just not good days.
But even as my Dad was dying in the hospital, I found a best part of each day. I found gratitude for something. And finding gratitude is a key element to healing.
As Dad lay dying, I found gratitude for the conversations we had, for the laughter and memories we could share, for the intimacy and love shown and felt between us. I could also find gratitude for the end of Dad’s suffering, for him making the final transition to heaven, and for a caring staff to help him in his final days.
So maybe it wasn’t a good day yesterday. Maybe today won’t be a good day. But somewhere, look hard, and find the best part of your day. As you search, you might notice your overall attitude improving. And you might find yourself truly searching to find the good in each transaction throughout your day.
The best part of my day yesterday, though I was teary and tired and sad, the best part of my day was being able to look through thousands of digitized photos of my family and friends, sharing memories of very special events, noticing little facial gestures that I found precious. By the end of the day, I felt very fortunate to be a part of this family, to be gifted with so much love from every angle of my life.
This past weekend, I was planning to take a girlfriend to our cabin for a weekend of wildness: you know, going braless, reading, writing, and doing needlepoint. I figured if we really got restless, we could roast marshmallows in the fire pit and take the dogs for a long stroll. Friday morning, my car was completely packed, ready to go.
Except, my ear had kept me up the previous two nights with pain. I was on antibiotics for an ear infection. My LLMD saw it on Wednesday, prescribed the meds, told me if I didn’t feel better Thursday, to call in for another scrip, which I did.
At 5 am Friday, I was in tears. Then, my eardrum ruptured, which usually actually feels better because the pressure is released. I felt better for about two hours and then the pain returned.
I was determined to get away from the weekend. So I went to a local “doc in a box”. He took a look, even gave me a photo of the inside of my ear. He suggested we clean it out first, which he emphasized would be painful. I suggested we not. I wanted to get on the road. I had enough ear infections as a child to know what that pain would be and I wanted none of it. Can you tell I was still in a bit of denial about the severity of this issue?
The doc let me go, told me to return on Monday, and he gave me a prescription for OXYCODONE. Hmmm . . . that’s when a little red flag went up that maybe I was in for a bit more pain than I anticipated.
Jeff, looking incredulously at me, asked, “And what happens when you hit 3000 feet on the mountain on the way to the cabin?” Hmm . . . I hadn’t thought about that.
I texted the photo of my eardrum to my LLMD, who then responded, “I’ve texted Dr. W. Call his office and they will see you now.” Dr. W is our favorite ENT physician. He added, “Abundance of caution is indicated presently,” another red flag.
A little voice inside said, “Have Jeff take you b/c you are not going to like this procedure.” Jeff drove, and then, in the doctor’s office, as I sobbed, he held me and comforted me while all the nasty stuff was removed. Evidently, it was a nasty infection filled with bacteria and fungus with lot of swelling.Jeff also managed to throw in a couple of horrible jokes in an effort to make me laugh. He did his best to break the tension for me. At one point, someone was suggested i.v. antibiotics since the regular meds didn’t seem to be working. There was “concern” of how aggressive to get. I burst into tears when this discussion arose not because of the IV, but rather, how with chronically ill patients, it never seems to be simple.
The doc filled my ear canal with an anti-fungal steroidal cream and I return this week for a progress check.
On the way home, Jeff asked me if I stll planned to go to the cabin. Actually, he said, “You can’t possibly be thinking of still going to the cabin . . . “Rebelliously, I retorted, “I haven’t made up my mind yet.”
I came home and slept three hours, exhausted from the pain and angst.
No, I didn’t go to the cabin. I stayed home, slept, rested, and got a few things done around the house.
HOW DOES THIS RELATE TO CHRONIC ILLNESS?
1. Pain – when I am in pain, I am focused on the pain. I don’t clearly hear what others around me are saying. I brought Jeff with me to help me get through a rough appointment. The doctor gave important instructions, none of which I heard while we were in there. I’m grateful I had Jeff in there to be my ears, eyes, and brain. Take someone to your monthly LLMD appointment. It’s such a physically and emotional exhausting appointment, you need someone else to clearly hear what is said.
2. Listen to your gut – When a little voice inside is telling you something, you probably need to listen. There is no way I could have driven myself home from that procedure at the ENT.
3. Humor – I still believe humor is key in diffusing the emotional intensity of a situation, and to help add a bit of perspective to the situation. When I was so wrapped around the axel with pain, Jeff helped me chuckle and let go of the pain just until it was manageable again.
4. REST – Rest is key to healing, whether it’s an acute or chronic infection. If I don’t rest, I won’t heal.
5. Expectations – Yet, another time, I have had to cancel my plans due to my illness. With the car packed, I thought I could still “manage” the issue. I think I was more upset with the fact that I had to cancel a trip I had long been looking forward to rather than being disappointed about being sick (again).
6. Acceptance – Acceptance is so key in the healing process. Once I accepted I was sick and what I needed to do to heal, the healing could actually begin. I slept in late, letting my body do whatever it needed to do to heal. I didn’t go out and about, running errands. I just stayed home and healed, doing little things like the laundry, and cleaning out my needlepoint stash.
There is something to learn from every experience. When I am trying to squash that little voice of reason in my head, or the loud voice of reason beside me (Jeffrey), I probably need to re-evaluate my goals.
I didn’t get away this weekend. But I also did not cause further harm to my body. I rested. I got a few house chores completed that would have been waiting for me upon my return. I didn’t cause my hubby too much extra concern or worry. If I had gone to the cabin, he would have been basket-case with worry. And my ear infection is healing. And, really, healing is the most important thing we can do. If we aren’t healing, we aren’t moving forward.