“Bad things do happen; how I respond to them defines my character and the quality of my life. I can choose to sit in perpetual sadness, immobilized by the gravity of my loss, or I can choose to rise from the pain and treasure the most precious gift I have – life itself.” ~ Walter Anderson
I travelled to see a new Lyme doctor yesterday. In Australia they are getting harder and harder to come by. This one lives hours from my home, so we allocated an entire day and my husband Ben drove me. I am still not up to driving most days, and certainly not a trip of this distance.
After 2 years of intense antibiotic therapy which saved my life, I was unable to find anyone to continue my treatment, and had to stop midway through a program of therapy. Why? My first doctor was shut down, and my second stepped away from practice. My third doctor wouldn’t treat me because of the risks to their career, although they were happy to supervise me on the protocols of a previous doctor until my medications ran out. so, like at many other times in my life I was back to doing my own doctoring.My fourth doctor, the one who initially diagnosed me, still refuses to treat me because it’s ‘too controversial’ – although they will put me on a ‘wellness program’.
Since then I’ve supported myself with herbs, diet, essential oils, acupuncture and detoxing. I have a good GP who is supportive but doesn’t know anything about Lyme. I’d been doing pretty well, apart from a few hospitalisations. But now my chest pain is coming back, and some other worrying symptoms. Symptoms that recently eased when I went on a course of antibiotics for something entirely unrelated. So I know I need to be back under the care of a lyme literate doctor.
To be honest, yesterday was a difficult day. As we drove I knew that my friend Liz was above me in the sky somewhere, winging her way to Hawaii with her family. After a recent cancer prognosis Liz knows she has a very short time left on this earth. I was thinking of her, and the conflicting emotions she would be feeling as she made the journey for what might be her last holiday with her loved ones.
When I wasn’t thinking about Liz I was reviewing my thick folder of health notes. These aren’t all my notes and results. Just the ones from the last few years. The entirety of my notes fills a filing cabinet, and that isn’t even all of them. In fact, in peaks of chagrin or frustration I have thrown many away.
As I looked through my medical files, I became increasingly distressed. I’ve been seriously ill since my late teens. This illness has shaped my entire adult life. Restricted my life. Impaired my life. Almost ended my life on more than one occasion.
I looked at all of the notes from doctors and specialists and natural therapists who didn’t believe me, or put the blame on me when I didn’t respond to treatment. I looked at all of my various diagnoses and treatment plans stretching back to my late teens, when I first became very ill. I am now nearing fifty and was only given a Lyme diagnosis in early 2013. I could fill a notebook with the diagnoses I’ve had before that.
I thought about all of the doctors whose practices have been shut down over the years for electing to help people like me who are falling through the cracks of the medical system.
I thought of the people I know who have suicided because of Lyme when they couldn’t take the pain anymore, couldn’t see a way out, were getting worse despite their best efforts, couldn’t find any support, or whose loved ones grew weary of the burden of their care. Of all of the sufferers who have never been believed or taken seriously, although they are desperately ill.
I thought of all of the lyme sufferers I know who have died from this disease, or the complications that have arisen from this disease.
I thought of how much money and time I have thrown at this, for such limited results.
And I got angry.
So here I was. Angry and nervous.
Nervous because what if this new doctor turned me away? What if they didn’t believe me?
I forgot to say fearful. I was fearful too. Because I am so much better than I have been and this chest pain is awful and I am so frightened of sliding back to where I was. Or worse.
By the time we arrived at our destination I was a churning mess, although I was trying to hold onto optimism.
The appointment itself was frustrating. The doctor wants more information. They are being very careful. Who wouldn’t, in a climate of such persecution of medicos? While they review all my recent results from the past few years, and discuss my case, I will wait. Hopefully this doctor will then take me on and I will finally have a supervised course of action.
As we drove home in a car filled with silence, I came to a profound understanding.
Most of my life I have faced hardship, especially in regard to my health. Despite that I have remained optimistic. I have made plans. I have held to a vision of a positive future. I have lived despite my disease.
This year I have so many lovely things organised. I am blessed with my husband and the love of my two crazy hounds. My little farm fills my soul with peace. I am well enough to work. I am finally well enough to travel. (Yes, I have chest pain and yes that freaks me out, but I have travelled and lived with this before and been fine, and if I croak it, it won’t matter anyway!)
So I decided yesterday that what matters most is my attitude. I just can’t afford to get bogged down in the injustice and awfulness of it all. I can’t get bogged down in my own personal history. I can’t even get bogged down in my current situation. I have to stop opening that damned folder! I need to rise above this, to turn my face towards the sun and stop looking behind me.
When I think of my plans and I sit in gratitude for my life, I can still be happy. I can still feel good inside.
That dark bird of death always sits on my shoulder. Just as she follows each one of us. But I am comfortable with her now, and she helps me to remember what is important and good in my life. Her presence is a blessing because I am reminded to live mindfully, to chose what matters and to live that. No more for me the life of an automaton. I cannot take life for granted and I won’t.
None of it matters, really. We will all die. We don’t know when. But while we are alive, we can live. And what we choose to think and focus on colours every single day.
I cannot always choose my outcomes or my circumstances, but I can choose my thinking. And that is a powerful place to be.
Yes, it’s all in the thoughts you think and the attitude you have. Thanks for the reminder.
Nicole I relate so much to your journey and to your attitude regarding it. My aunt sent me the link to this blog post, knowing I would see myself in it. I have had a ME/CFS diagnosis for 25 years, plus electrosensitivity (severe) since pregnancy in 2003. I’m under a great East Ringwood practitioner now, and in treating all the various viruses, parasites etc, Lyme showed up in her testing and she has treated me for it. Long explanation, but if you ever want her details or those who do similar work to her I can give them to you.
I love your attitude. I appreciate your honesty. And I wish you all the health in the world!
Love Louise (Ballarat)
Hi Louise,
My name in is Claire. I have a similar story to yours and would love the details of your practitioner pls who has tested and treated you for these things please.
Much love
Claire
It never ceases to amaze me how much you GIVE out to the world, to us here on WordPress, to your friends, family and clients, despite your own health ordeals. Please know how much I appreciate you in my life and your wisdom here is fantastic and has taught me a lot about how I have been mishandling some of my own recent life hurdles. Thank you Nicole xxx
Nicole, I don’t understand why the medical system in Australia won’t recognize lyme disease either.
It’s confounding, exasperating and ridiculous.
Haven’t they read papers from around the world?
The Australian medical system needs to wake up.
We, as readers of your blog could set up a system of sending medical articles regarding lyme disease to the pertinent authorities. With an avalanche of mail, I’m sure there would have to be a change in the system : A quiet, but effective way to register our opposition to the stance the medical system has taken.
If you do come to the States. I would be happy to offer you a place to stay on the West Coast.
K
Thank you for this. I have CFS/ME and woke up feeling like I have a hangover and dripping with depression. Reading your words I’ve given myself a bit of a mental shake.
Whenever I see a segment on A Current Affair about Lyme disease I think of you and all the pain and run around you have received for a disease many still do not think exists in this country. I do not understand how hard it is for doctors to admit this disease is here and offer the right and effected treatment to the suffers. I get so angry about how those who suffer from this disease are treated. Take each day as it comes and remember you are often in my thoughts and prayers.
Nicole, I can’t believe how badly you’ve been neglected by the healthcare system. I live in Rhode Island (USA) where Lyme disease is quite common because of all the deer we have. It’s considered a minor diagnosis if caught in time. And since it’s common in these parts, it’s routinely looked for if someone exhibits even mild symptoms. Have you considered coming to the United States for treatment? I know it would be a huge undertaking, but there is zero controversy surrounding the disease here and you would be properly treated. Either way, I continue to pray for your massive healing. Lucinda
Nicole, while I don’t have Lymes disease I do understand your frustration of a lifetime of facing adversary. As a child I was severely sexually abused, spent a year at the age of 10 on liquid opium to control , uncontrollable diherra (which gave me the freedom to live life as a normal 10 year old :•》) and now have short bowel syndrome and am living with TPN 14 hours a day. Without wanting to sound like I am bragging I am often told that I am one of the most positive people that people know. What they don’t see, except for my family and a very good friend are the dark days, the delabitatingly Gray days that drive me to my bed and my journal. However, I have found that when I allow myself a couple of these days I can once again climb on that positive horse because from that height I see things much clearer, I breathe easier and life is sweeter. This “syndrome” could very well lead to my demise through organ failure or infection, I think of that daily, although usually only in passing. I try to remember I was given this gift of life to live and attempt to live each day in way that makes me proud. We have 2 adult children and ever since they were little and I was experiencing deep depression I tried to keep at the fore front of my mind that I was daily creating memories for my children and I want those memories to be joyous ones. You are so right to say that we don’t know how strong we are until we have no other choice. Finding your blog has been such a blessing in my life, I use your meditations daily, laugh and cry with you and your clients, experiment with your recipes, you have become part of my life!
I pray as you face these new,old struggles you will once again find the strength you require, the peace you deserve and the joy that is yours for the claiming!
Many blessings and Namaste
Debbie Myers
This is a cry for help . If only someone with any clout could see this and help you . I have been following your journey for so many years now Nicole …you have given so much to me I so wish I could help you my darling …keep on …keeping on …there has to be something or somebody out there who can help. My 💔Is with you .
Cherryx
Dearest Nicole,
Yes, we all have bad, sometimes terrible ones, amongst those of the days that we label ” fairly good”. We get by with support , from the voice of encouragement of loved ones like yourself. We are reminded to focus , really hard, on the good and grace offered to us as life in itself. On such a ” not-so-great” day, do remember ,we all stand by your side, with love and gratitude. You are in our good will thoughts, fervent prayers and hopeful wishes.
Lots of Love.
Trusting you will receive what you need to recover. Take care. Sending love xxx
I will keep my fingers crossed for you Nicole that these new doctors follow their pledge in helping the sick without discrimination! We always get amazing insights and many of them in our darkest moments. I admire your positivity, strength, courage and outlook. You certainly are an inspiration! What a joy it is for you to have Ben, Harry and Café Dog plus your beautiful home. At least all these things which surround you every day, nurture your soul. I have been blessed with good health but when I see my loved ones and friends suffer, I often see the anguish it produces, not only on them but also on their families. Ben must be your Earthly Angel for he must silently hope and pray silently as he walks beside you, supporting you in every way. My sister-in-law’s husband walked away when she came home after her operation to remove part of a vicious brain tumour. So, I hold Ben up high for being there for you! What a beautiful soul. I am just wondering whether your Aunties have a bush remedy. No doubt, Nicole, the Universe will open another door for you if this one to your new doctor shuts. I am sure all of us reading your blogs hold you in our healing thoughts and prayers. Much love for a beautiful day xx
You have such courage and it is so hard to deal with if there isn’t a good and knowledgeable doctor. Hope there is some improvement soon.
Dear Nicole, your life is one of such contrasts and perhaps it is not possible to have each side without the other – who knows. As your journey continues I wish to extend to you courage and love. Your words help to heal, your kindness and compassion for your fellow travellers offers such a beacon of light upon us all. How we all would like to be able to remove the suffering of those we cherish and protect them from pain. I pray for you that , all the love, kindness, and beautiful energy that you send out each and every day, takes a u-turn back to you, to support you through yet another challenging time. Blessings and peace always. Love Doone
Hi Nicole, I always appreciate and am inspired by your posts. Today’s was a challenging one. I know you have your own guidance and protocols regarding your health care, or leads to protocols, etc. However, a couple of people and resources kept coming into my mind to share, so please regard them according to your own knowing. Donna Eden, who I am sure you must know about, has a similar personal history of not being ‘treatable’ by the medical profession, with her prolific array of chronic and terminal conditions, and was given a very short time to live. I heard her recently say, when the last doctor sent her home to “get her things in order”, something inside her leapt with joy, knowing that now her healing was in her hands and she could get on with it, using her spiritual healing gifts to not only heal herself completely, but go on and share it with the world – for the last 40 years. She is a pioneer of energy medicine, and her teaching and practitioners reach around the world. Also, have you heard of Perelandra? Machaelle Small Wright has been working with Nature Intelligence for over 30 years to co-create essences, both flower and microbial balancing, etc, and her followers and products also are across the globe.
Sending you much love and blessings in your journey, confident that you will find your own way, and shine your light into the world to guide and help heal others too. You already are.
Love and Light,Sharon
From: Cauldrons and Cupcakes To: sharonppierce@yahoo.com Sent: Thursday, March 3, 2016 3:26 PM Subject: [New post] Choosing Your Emotional State #yiv1270736944 a:hover {color:red;}#yiv1270736944 a {text-decoration:none;color:#0088cc;}#yiv1270736944 a.yiv1270736944primaryactionlink:link, #yiv1270736944 a.yiv1270736944primaryactionlink:visited {background-color:#2585B2;color:#fff;}#yiv1270736944 a.yiv1270736944primaryactionlink:hover, #yiv1270736944 a.yiv1270736944primaryactionlink:active {background-color:#11729E;color:#fff;}#yiv1270736944 WordPress.com | Cauldrons and Cupcakes posted: “”Bad things do happen; how I respond to them defines my character and the quality of my life. I can choose to sit in perpetual sadness, immobilized by the gravity of my loss, or I can choose to rise from the pain and treasure the most precious gift I ha” | |
Nicole, you’re right, none of us know what lies ahead and how much time we have left. I’m sorry you’ve lived through pain but I so admire your strength and courage and the positive attitude you’ve cultivated. Living in the moment and making the most of our time is the best way to approach life. I wish you nothing but the very best and send you warmest wishes and love.
You are amazing Nicole. I understand the struggle. I am 48 and have been in pain since 13. Doctors mocking me and not believing me until I was diagnosed in 2011 with very severe fibromyalgia. I am hopeless but you help me so much. Thank you
Hi Nicole, If you ever need assistance to get somewhere and Ben is busy I am happy to help in any way you need… I sent your 2 stories concerning Liz to my Uncle who has just had a bad prognosis of 2nd stage cancer and hoping he and my Aunty and family embrace life, love and today…. Bless your beautiful heart,your kind soul,and your sprinkling of magic you put out in the world…. The Berkley River, Kimberly’s…
Lynette Higgs0487 302 876 Available….
Date: Thu, 3 Mar 2016 20:26:27 +0000 To: lyn_rudy@msn.com