Showing posts with label Cancer & Lymes. Show all posts
Showing posts with label Cancer & Lymes. Show all posts
From the archives...
With Caravan Sonnet turning 11 years old this past year, it is amazing to look back and see all of the things that have taken place during that time. This year, I am re-sharing some of my favorite posts from the 2014 year... it is hard to believe that it is ten years ago. 10 years... a decade...
This post, show up in hope (originally posted in August 2014) has hit me deeply this month... although the circumstances are different- my health is stable and I am healed... I am in a very difficult and private waiting season for several specific areas in life... this post has encouraged me and I pray it will encourage you also today.
Original Post- posted August 4, 2014
Eight and a half years ago I was the recipient of a miracle from the
Lord in the form of healing from what I was told was an incurable disease. After
struggling for years in physical pain and begging the Lord for mercy when the
medical community gave no hope the Lord performed a miracle. Family and friends
cheered joyously as they witnessed their prayers answered. Doctors shook their
heads in amazement when the healing happened muttering, “it must be something
higher that healed you”. People responded with encouragement over my faith and proclaimed the Lord's power. It is a story of joyous victory and of good triumphing
over evil. It is a story that rings with hope in a God who still performs
miracles and of a God who is triumphant over illnesses after “the experts” have
given up hope. It is a story that people love to hear, and one that I have
loved to share over the years. It is a story that makes me well up with tears
at the goodness of the Lord and stand in awe of what He did eight and a half years ago.
But the truth is that I am living a much different story today. I have shared some of it here on the blog but there are many parts that have remained in private. To be truthful the life that
I live now shattered midst ordinary days five years ago when my ex-fiancé
walked out of our relationship a mere five months before we were to be married with no warning. Since then in these past five years my life has crumbled bit by bit by one circumstance to another to finally being diagnosed with Cancer, Advanced Late Stage Lyme disease, an environmental illness and
several other diagnosis'. The combination of the diseases’ listed has
severely affected my life and began one of the most difficult fights of my
life. But while my life shattered my faith in my precious Lord, who is the God of HOPE, has not.
The recovery is long and instead of a planned out future, I am left with
more questions than answers. My aching longings for the future of being married
and being a mom has been placed on hold and instead of my dreams I am left with
questions of life, value, and the God that I so desperately adore. In my little mind it is not the story that shouts the triumph of a
powerful God as I expected the same ending of miraculous healing of eight and a half years
ago. It is not a story that we love to hear, but in this broken world it is a
story that many people live.
We all need to hear the stories of miraculous conquering and
healing to spur us on in hope. These are the stories that scream to us from the
pages of the Bible and the stories that we are quick to reference when bad news
comes to a loved one. But there is a much quieter and powerful story that is
also found deep in the pages of scripture. It is a story of showing up with
hope in the ordinary days lived among the miraculous and victories. It is the
story of living with anticipation that the Lord is still at work when we most
feel He is absent. It is a story that drives us closer to the heart of God as we cry out to Him. I have learned to fall in love with the God who I know does miracles. I have also fallen passionately in love with this same God who has the power to do miracles and sometimes says wait.
"He is the same yesterday, today, and tomorrow." There are beautiful examples of this in the Bible. One of those is the story of the women who bled for
twelve years from Luke chapter eight. It is a beautiful story of a woman who
must have spent everything that she owned on doctors who had not been able to
help her and yet she still showed up to meet Jesus. With no promise that Jesus
would do anything she pushes her way through the “crowds that almost crushed
Him” and reaches out her hand in desperation and the hope that Jesus could not
only heal but that He would show up.
Friends, if you are struggling through the dark night of
suffering I urge you to hold fast to the story of the woman who was ill and
find hope in the story of the Israelites. Just like that woman, we see in the
book of Exodus that the Israelites held on to the hope that God was still at
work. As they limped out from under the hard yoke of slavery they carried their
tambourines through the long trek of the desert believing that there would
still be a song yet to sing. They didn’t know when the song would come, but
like the woman they pushed through and held onto hope that God would show up.
Despite the fact they had no assurances or promises of what their future would
look like, they walked with their tambourines. They were fully prepared for the celebration that they did not yet have a
time frame for. The celebration that only lay hidden in their hearts as they
walked mile after mile in the desert. The same hope of celebration that the
woman who bled for twelve years was also expecting as she reached out her hand
for Jesus’ cloak.
Dear friends, what about you? Are you ready to show up in Hope? I
have friends who are scattered around the world serving AIDS victims in Africa, fighting for the freedoms of those in the Middle East and some holding crying orphans in the heart of Haiti . Maybe you are like them and
can venture to far off countries to rescue those that the world has abandoned.
Or maybe you can quietly and powerfully write your story by showing up, and
learning like I am to take one day at a time, find beauty in the ordinary, and minister to those that the
world has forgotten. Either way we
can all come to the cross and take His love into our worlds- no matter how big
or small that might seem. Either way we can show up and rejoice that He is going to answer as we step out in
faith and cry out to Him. All we need to do is be ready to rejoice, reach out
for His garments, carry our tambourines, and show up in Hope.
As Lyme Disease Awareness month comes to an end, the reality is that those fighting Lyme Disease will continue to face their illness far beyond one month. I wrote this post back in 2018 as I was finally seeing some light of healing at the end of a very very very dark tunnel and it is one of my most highly read posts. Today, for Thursday Health Thoughts I wanted to re-share it again. Please note again this was written in 2018 so many things have changed in the past five years for me personally but not for Lyme Patients. Cheering on those in the midst of the battle and their loved ones. You can do this.
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1. Life Truly Feels Like It Is "On Pause" In Every Aspect
I can't even begin to count the thousands of times that people forget that I have had to give up my career, my independence, my life to fight this disease. Absolutely everything has been put on hold and it is one of the most difficult things to deal with in this journey. This reality actually inspired me to write When Truth Refreshes (found HERE) because of the myriad of emotions that come from this aspect alone.
This time of year (and many times of the year) brings up a ton of different emotions as my social media feeds are filled with pictures of all of the graduations, wedding announcements, baby announcements, summer plans, etc. Like many Lymies it can often feel that our lives are on a constant pause button. In that though I have learned a deeper gratitude for the beauty in life... the beauty of now.
The beauty of savoring the moments that are right before me and living them fully.
The beauty of loving those that are right in my life.
The beauty of having deeper relationships than I ever knew because Lyme has a way of stripping off the "pretend" and getting to the heart of the matter.
The beauty of living vulnerably and freely with no expectations.
The beauty of believing the impossible for each day.
This is a gift that I never want to forget as I continue to heal.
2. Healing Doesn't Happen Overnight and It is NOT a straight line.
Before Lyme my experience with being sick is that when you have an infection you feel poorly, you take your vitamins, supplements, oils, etc. and if you choose the prescribed medication and withing a day, week, or sometimes a month, healing comes. Healing takes place quickly and many people start complaining if they have felt sick for more than two or three days.
Lyme has taught me that the complete opposite can be true. Healing doesn't happen overnight and it is a complex fight to deal with all of the issues that Lyme has caused as it can wreak havoc on so many different parts of the body. It's complex. It's tiring. It's exhausting. And it is an all out fight that you are in every single minute and hour of the day. And there is nothing simple about that. (You can read more about my thoughts on the long and winding road to healing by clicking HERE.)
And in this I have learned that all of life is like that... the journey is long and it lasts a lifetime. There is nothing quick or simple or straight lined about a person's life. I read this quote the other day and shared it with my IG community and it has stuck with me in profound and deep ways:
"Making someone feel loved in an instant is so much easier than showing someone your love over and over, day in and day out. It seems to me that one of the greatest hazards is quick love, which is actually charm. We get used to smiling, hugging, bantering, practicing good eye contact. And it’s easier than true, slow, awkward, painful connection with someone who sees all the worst parts of you. But quick charm is like sugar - it rots us. Only love feeds us. And love happens over years, repetitive motions, staying, staying, staying. Showing up again. Coming clean again, being seen again. That’s how love is built."
That... yes that... is the deep kind of love I long to take with me for the rest of my life.
3. 95% of People You Know Have No Idea What Lyme Disease Is Before You Got It.
Even though there have been more people talking about Lyme Disease in 2018 than even since my diagnosis in 2013, 95% of people that I know didn't know what it was before I started sharing my story. In response to this I wrote and shared a basic post entitled, "What is Lyme Disease?" a couple of years ago (and have updated it this year which you can find HERE) that remains one of my most read posts of all time.
With this though comes a complex situation that develops. I have been very vocal about this (to the dismay of many of my Lymie friends that I know *smiles*) and it stands true. Because of this lack of knowledge the healing journey is complex and isolating. On one hand I long to have all of the energy in the world to be the biggest advocate for Lyme Disease, but on the other hand... well...the hard truth of the matter is that I don't have that energy to do all of that advocating or the passion for it.
This is complex for Lyme patients- we want to shout it from the rooftop about the disease, and yet just keeping track of all of the pills, supplements, meds, and life that needs to take place each hour doesn't allow us to do that always.
Over the years I found what has worked for me... writing for me is my advocacy point. I have also done speaking on Lyme and sharing my story. Talking and listening to those in my circle is my advocacy ... for the Lymies. For others it is taking on congress and changing laws. I love that. I love that each of us have the opportunity to walk this complex road individually and uniquely. *smiles*
And in this... perhaps Lyme Disease has given me the greatest lesson... life is to short to say "yes" to everything. Choose what is important and what you are going to invest your time into because life is short.
4. Many Doctors Don't Believe that Chronic Lyme exists and are Not Aware of the Complexities that come with it.
Before I got sick I used to watch some medical shows off and on with friends and marvel at the way the doctors would treat patients with "rare and misunderstood diseases". Before I got sick I was convinced that doctors knew pretty much everything in their field. After my diagnosis I have not watched one medical show and learned that doctors sometimes don't know everything. Let me tell you - it is not fun to be the patient sitting in the office where the "experts" on health don't understand your disease, where you have to explain how a certain medication will cause a herx reaction, or tell them that "no, this is not all in my head".
A quote that I mentioned in the forward of my first book and that has brought me to tears sums this point up well: "In the fullness of time the mainstream handling of Chronic Lyme Disease will be viewed as one of the most shameful episodes in the history of medicine".
Amen. Amen. Amen.
I think that this has taught me a huge lesson in general in my life. Words are so powerful. We have the beautiful opportunity to recognize all of the hurtful and "death words" that have been spoken over us in this journey and choose to spread the opposite: to speak life-affirming words into each person that we encounter. I want to take this with me for the rest of my life.
5. Lyme Disease is the Loneliest Battle You Will Ever Fight.
"Recovery is not a team sport. It's a solitary distance run. It's long. It's exhausting. And it's lonely as hell."
Fighting Lyme Disease is the loneliest battle you will ever fight. Even with a great support team you have to face the monster day in and day out- doing something every hour or more to fight, and it is incredibly lonely. It is days upon days upon days of being in bed, being in your house (where moving to a different room can be a huge accomplishment) and days upon days upon weeks upon years of fighting a serious and determined killer. It's a solitary distance run... a marathon that you never wanted to run or trained for. It's incredibly long. It's physically and emotionally exhausting. And it's lonely as hell.
There is something deep and refining about facing loneliness though. There are lessons that I have learned in this season that could never have been replicated in a season full of people all around. These lessons have shown me the worst about me and I have grown up. Not just age wise, but in deep heart ways that only a season of loneliness can teach you. Dietrich Bonhoeffer said it well... there is a season for togetherness and a season for being alone. It's a challenging and lonely wilderness that most want to escape and run from. This journey teaches you to not run away from the hard but to face things with courage and without fear.
6. People Can Say the Most Insensitive Things
I can't even begin to start to list the thousands of insensitive things that I have been told throughout this journey ranging from: "It must be nice to not have to go to work" or "It must be nice not to have to ever leave summer you have it everyday of the year" or "I am tired and you don't see me complain about it" or "I wish I could just lay around and watch TV" (a thing to do that those who know me well know that I don't like to do) or "you just need to exercise more" or "if you just tried this... (insert oil, supplement, antibiotic, pill, etc.) you would be better" or "Why aren't you better yet?" or "You must just not have enough faith to be healed" or "What is the name of the disease you have again? Lame Disease?" And the list goes on and on and on and on...
I honestly had no idea how insensitive and hurtful people could be until I got sick. At a time when I thought people would surround, encourage, and rally around me, I have received so much skepticism, hurtful and rude assumptions and comments, and lack of support from those that I truly thought were close friends. I shared a little in my post, "after the diagnosis", but the truth is that this is a sad but realistic part of the journey.
But here is what I have also learned...
7. There are Unexpected Blessings of Illness
While it is true that I have had lots of friends walk away and been very unsupportive of my journey, I can also say without a doubt that I am incredibly blessed woman and my cup truly over runs with the way that God has blessed my life with amazing friends and family support.
Fighting a serious illness like Lyme leaves you incredibly vulnerable to the relationships that you have in your life because you have nothing to offer. You aren't well enough to do things that you might have done "normally" before (like attend special events or birthday parties). You aren't well enough to often remember the days of the week let alone remember important days in others lives (like birthdays, anniversary dates, etc.). You often don't have the strength for regular phone conversations (or meeting for coffee). And you often are trying to use every single spare energy you have to get better that "real life" disappears into a "fog" of "what was".
You learn in a heart breaking and startling way the reality that the many of the relationships that you have were built on what you have to offer another person instead of love. And the sad reality is that many, many, many people walk away when you have nothing to offer.
A sweet friend of mine who is fighting Ovarian Cancer recently asked me if I thought illness caused division and was the cause of people leaving. Over the years I have contemplated it , and the truth is that I don't think it is. Yes, illness is messy and hard and filled with tons of pain and yuckiness. BUT. I truly believe that illness just shines a spotlight on the issues, the reality, and the character of who we are and those that we are friends with. I truly believe that if it wasn't the situation of illness that caused the "fracture" in relationships, it would eventually be something else.
BUT in the midst of all of that, there are unexpected blessing of illness if you look for it. In the midst of the difficult, the messy, and painful, there emerges a group of people that become "your family" and "your tribe". These are the people that instead of walking away when times get tough they continue to love on you even though there is absolutely no benefit and no gain for themselves. They quietly and sacrificially love you, walk with you, and model what a healthy relationship looks like. They are the unexpected blessing of illness and I have realized that even more than before I am a very blessed woman. (You can read more about the unexpected blessings of illness in this post HERE.)
And here is what I have learned in deep ways as I have begun the healing journey. I love more openly and freely then before Lyme. The sentiment "wild and free" has a whole new meaning for me beyond a pinterest saying. I have learned that letting go of expectations of how someone will respond is the most beautiful thing in the world.
Love given freely will never come back without a person being changed. Keep pressing on, keep the faith, and live in the beautiful hope of loving someone freely.
8. The Financial Cost to Fight the Disease will Drain Every Resource that You Have.
I shared more in my post, What is Lyme Disease?, but this aspect is the most stressful thing about the entire journey. From it stems hundreds and hundreds of issues that are overwhelming.
Lyme Disease patients worry about things that most people don't think about. I will debate for hours and hours each week on which supplement or antibiotic I should do "without" due to money. We have concerns and stresses that are impossible to explain. We have sold everything we can think of, have had to humble ourselves to ask for money and are embarrassed to admit we have done so, and have asked every family member, friend, and stranger for help. In the process most of our relatives and friends have depleted their savings accounts and bank accounts to help us. Let me say what most Lyme Disease patients are thinking about all of the time but are ashamed to admit:
We don't care about the battles of politics and insurance. We don't care about "which treatment" is supposedly the best. We don't care about "this or that". What we do care about is fighting for our lives and our health and most of us are so scared that we can never get better because we do not have financial ability to do so.
And here is what I have learned...a simple and yet profound lesson: to watch for the miracle of provision each and every day.
(side note: If you are a Lyme patient and looking for financial tips and resources I wrote a blog post about this topic that you can find by clicking HERE.)
And here is what I have learned...a simple and yet profound lesson: to watch for the miracle of provision each and every day.
(side note: If you are a Lyme patient and looking for financial tips and resources I wrote a blog post about this topic that you can find by clicking HERE.)
9. Fighting Lyme Disease Will Change You.
Even when you heal you will have changed too radically - physically or emotionally to ever go back to what you knew or were before this fight... and that is the deepest lesson I have learned.
I truly believe that Lyme Disease has changed me in the best possible way and it can if you let it. We have the opportunity to become more compassionate, loving, brave, courageous, free, and more giving people then we were before. We have the opportunity to become a better version of who we were before we entered this fight. Physically, emotionally and spiritually I look back as I enter my 6th year of living at home and see that I am a different person... I have fought for who I am and I realize that I am loving this person I am becoming.
Lyme Disease has not defined me... but it has been the greatest teacher and for that I am forever thankful for all of the lessons above.
Lyme Disease Awareness month starts in four days! This year I am joining in with some women around the world who are healed, living healthy and full lives after years and years of treatment (or a decade or more as was my case and others) and who are sharing their stories on a variety of platforms.
I am honored to share and answer questions over on Instagram and on social media. My hope and prayer is that this may help some of you in the journey.
If you have any questions about treatment, experiences, etc... please leave your questions and I will try to answer as many as possible.
You can click HERE to leave your questions!
A couple of years ago my precious daddy snapped this picture of me running as he wept. For my dad who fought for my life so hard it was a priceless moment and beyond that a miracle...
speechless and amazing to think that 6 years prior to this picture/moment he needed to carry me out of my bed in order for me to leave it, push a wheelchair at points in this journey, and help me for a couple of years when I couldn't even walk down the hallway of our home to get to the bathroom, and then help me learn to walk again.
I am so glad that my dad got to see those huge beginning steps of healing before he died...I remember breathing so hard when this picture was taken I could hardly catch my breath and he said "one day you'll make it to the point walking/running"...I laughed (it's a mile away)but he was serious and said he would be cheering me on...but this morning...two years later and four years after getting #courtneytheportney for extreme and more intensive treatment (then I have often talked about) I made it to the point.
speechless and amazing to think that 6 years prior to this picture/moment he needed to carry me out of my bed in order for me to leave it, push a wheelchair at points in this journey, and help me for a couple of years when I couldn't even walk down the hallway of our home to get to the bathroom, and then help me learn to walk again.
I am so glad that my dad got to see those huge beginning steps of healing before he died...I remember breathing so hard when this picture was taken I could hardly catch my breath and he said "one day you'll make it to the point walking/running"...I laughed (it's a mile away)but he was serious and said he would be cheering me on...but this morning...two years later and four years after getting #courtneytheportney for extreme and more intensive treatment (then I have often talked about) I made it to the point.
I have fallen in love with starting to learn to run again and all I can think is ..."thank you, thank you, thank you" to everyone who has been part of this journey. *tears*
For a girl who was told by some of the most well known medical doctors and hospitals in the world that I would never walk again let alone run (or dance again).I can't wait to revisit some of them and share the miracle.
Don't let anyone ever tell you something can't be done. It may take WAY longer than you could imagine (it was a more than a decade long battle for me) but don't ever lose hope. Miracles happen every single day...I am living proof and my precious daddy is cheering me on with a huge smile. #loveyoudaddy #takethatlyme
They hesitate... and then the questions start.
"Is that what happens when you get bit by a tick?" they ask.
"Yes" I answer.
"When did that happen?" they ask.
"2007. May 19, 2007 to be exact." I reply.
"Not to be rude or anything but you know that you can just go to the doctors and get antibiotics for that." They state.
"Yes, I am aware of that." I reply.
"Did you get the bulls eye rash? You just need to go get medicine and get better" they state (most of them very kindly, a few a little sarcastically, and one who accused me of "simply making it up to get attention").
"No seriously, if you had the rash you should go get medicine. My ___________(insert some long lost family member's sisters friends cousin's name here) had Lyme and they got better in a few days...maybe a week at most. Why are you waiting?" They state more insistently. I hesitate and then with a quiet sigh my reply comes.
"I was bit by a tick on May 19th, 2007 hiking in Great Falls, Virginia. I remember the date exactly because my ex-finance and I talked about marriage that day. The next day as I was training for a 1/2 marathon I noticed the bulls eye rash on my upper right arm. I received medication (yes, I finished the full dosage) and was seen at John Hopkins University Hospital Lyme Center. After completing the medication I was declared "Lyme free". Except I wasn't..." I calmly reply.
Absolutely silent they look at me. And some say what I am sure everyone is thinking... "So what the heck is Lyme Disease and how in the world is this making you so ill?"
To be frank it is a question that I have asked myself thousands of times as I approach the 13 year anniversary of contracting Lyme. While my health slowly declined over the course of 5 years until I became bedridden and housebound before obtaining proper treatment, the reality is that the past decade has been spent dealing with Lyme and its ramifications on my body. After 7 years intensely fighting this disease you would think that I would be an expert in sharing a quick and succinct version of what Lyme disease is, but the truth is that the answer is just as complicated as the disease itself.
And it is a growing and widespread epidemic...
At a recent Lyme Disease conference it was stated that "Lyme Disease is the growing epidemic and health crisis of the 21st century" and that "in the fullness of time the mainstream handling of Chronic Lyme Disease will be viewed as one of the most shameful episodes in the history of medicine."
And it is a growing and widespread epidemic...
At a recent Lyme Disease conference it was stated that "Lyme Disease is the growing epidemic and health crisis of the 21st century" and that "in the fullness of time the mainstream handling of Chronic Lyme Disease will be viewed as one of the most shameful episodes in the history of medicine."
Lyme Disease is contracted by a tick bite that has been infected and then infects the person that it has bitten. While a bulls eye rash is common in most cases, in recent years there are more and more cases that occur with the person never seeing a bulls eye rash. In addition to this in there are now numerous scientific studies that have shown that in addition to a tick transferring Lyme you can also contract Lyme through being bit by a mosquito, flies, fleas, etc.
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Lyme Disease is considered (by most doctors- some would disagree) an infections Disease with the bacteria in Lyme called "Borelia Burgdorferi". The Lyme bacteria is unique in its shape (it has a spiral shape) and unlike most diseases it is able to burrow into not only into the blood stream but into vital organs, muscles throughout the body, the nervous system, and body tissue. (In addition to this studies coming out of Europe have proven that Lyme has the potential to drill into bones.) Due to the unique shape and properties of the Boreilia Burgdorferi Lyme has the ability to literally infect the entire body and travel throughout the blood stream (doing incredible damage to the organs and the cells that it connects with in its way). Over time Lyme also has the ability and capability of surrounding cells, killing them, and creating a "wall" that prevents antibiotics to "break" the barriers. In addition to this the bacteria commonly makes cysts that are also difficult for antibiotics to touch.
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Due to these reasons a person with Lyme (whether mis-diagnosed, mis-treated, or not caught at the time of infection) can suffer for decades before being diagnosed and can suffer a confusing and wide array of symptoms that might or might not look like other "lymies" fighting the same battle.
Lyme is considered the "Great Imitator" and is known to imitate over four hundred different diseases including CFS/ME (Chronic Fatigue Syndrome), Fibromyalgia, IBS, Lupus, MS, Autoimmune Disorders, Alzheimer's, ALS, Migraines, Depression, Meningitis, Lou Gehrig's Disease, and hundreds of others.
Patients in "late stage or chronic stage" Lyme Disease are fighting a complicated and complex battle as many (including myself) are fighting not just the Lyme but co-infections, additional diagnosis', and issues that have occurred due to the fact that Lyme has waged war on their bodies. Due to the fact that the bacteria from Lyme Disease can not only travel but multiply patients are dealing with multiple issues and symptoms. The bacteria with Lyme Disease does not like the fight and will literally "fight back" which causes a "herxheimer reaction" that can be worse than the disease itself. Due to this the "horror stories" (as the news has sometimes labeled it) are true, as some patients have died and many patients end up in the hospital and are fighting for their lives.
Patients in "late stage or chronic stage" Lyme Disease are fighting a complicated and complex battle as many (including myself) are fighting not just the Lyme but co-infections, additional diagnosis', and issues that have occurred due to the fact that Lyme has waged war on their bodies. Due to the fact that the bacteria from Lyme Disease can not only travel but multiply patients are dealing with multiple issues and symptoms. The bacteria with Lyme Disease does not like the fight and will literally "fight back" which causes a "herxheimer reaction" that can be worse than the disease itself. Due to this the "horror stories" (as the news has sometimes labeled it) are true, as some patients have died and many patients end up in the hospital and are fighting for their lives.
The symptoms of Lyme Disease vary but most people struggle from many of the following symptoms: debilitating fatigue, heart issues, heart palpitations, arthritis, facial numbness, blood pressure problems, extreme pain, autoimmune disorders, malnutrition, hair loss, vision problems, skin issues, rashes, panic attacks, adrenal failure (or fatigue), memory issues, food allergies, unexplained allergic reactions, insomnia, inability to absorb vitamins and nutrition, hormonal issues, circulation issues, dizziness, seizures, body numbness, blindness, migraines, paralysis in extremities, heart attacks, inability to handle temperature change, lung function, shortness of breath, menstrual issues, and the list goes on and on and on. I have just listed a few but here are hundreds more.
In addition to the physical aspects of fighting Lyme Disease patients are in for the FIGHT of their life not only physically but mentally, financially, and emotionally too. Most Lyme Disease patients have seen dozens of doctors (I personally saw 273-including some of the top hospitals throughout the US-before I was correctly diagnosed) and after the diagnosis can introduce the most difficult battle that is never expected.
Lyme Disease patients are warriors as they have had to push through hundreds of "all knowledgeable doctors" stating that it is "in their heads" or "they just need some meds". (I had a specialist in 2013 -after we had spent 4 hours in a snowstorm to get to his office-tell my mother (in front of me) that she was "enabling" me to continue to set a "destructive pattern" of desiring attention and that "absolutely" nothing was wrong with me. Within two months of seeing this doctor I not only had been correctly diagnosed with Lyme Disease, but aggressive skin cancer, and several other illnesses.)
Finding a doctor who is willing to treat a Lyme Disease patient long term is also another battle. Due to arguments with insurance companies, Congress, and medical limitations it is extremely difficult to find a qualified and competent doctor. This takes hours and hours and hours of research and it still doesn't guarantee you an appointment. Mentally this is absolutely exhausting for patients. And after the appointment that you have hopefully gotten there is still the treatment to fight through.
Lyme Disease patients are warriors as they have had to push through hundreds of "all knowledgeable doctors" stating that it is "in their heads" or "they just need some meds". (I had a specialist in 2013 -after we had spent 4 hours in a snowstorm to get to his office-tell my mother (in front of me) that she was "enabling" me to continue to set a "destructive pattern" of desiring attention and that "absolutely" nothing was wrong with me. Within two months of seeing this doctor I not only had been correctly diagnosed with Lyme Disease, but aggressive skin cancer, and several other illnesses.)
Finding a doctor who is willing to treat a Lyme Disease patient long term is also another battle. Due to arguments with insurance companies, Congress, and medical limitations it is extremely difficult to find a qualified and competent doctor. This takes hours and hours and hours of research and it still doesn't guarantee you an appointment. Mentally this is absolutely exhausting for patients. And after the appointment that you have hopefully gotten there is still the treatment to fight through.
And both of these things cost an extreme amount of money.
Money that most patients (like myself) did "OK" with for the first several years of wandering the long trail of finding correct answers. But after that time period (and for some it is a much shorter time frame) money is not something that just continues to "come in". It has been spent (wisely, I would like to clarify) on finding answers, traveling to doctors across the country, treating one or two mis-diagnosis', and on numerous treatments (most alternative so insurance does not cover it). ALL of these things add up to thousands and thousands of dollars.
Like myself, most Lyme Disease patients are not able to work full time and those that have to struggle to survive day to day. Without a set source of income bank accounts, savings accounts, retirement funds, etc. are quickly depleted. I have been asked by hundreds of people- "didn't you save for a rainy day"? Or... "What about your savings account?". I am going to be incredibly honest here and share something very personal. I had a wonderful savings account (I was a Dave Ramsey's graduate *smiles*) that by year three of this "adventure" was being drained and then at years five and six was completely depleted. (Just to give you a slice of a picture I have spent in the last ten years approximately $200,000 on medical issues, supplies, supplements, travel to doctors, etc. desperately trying to get well!!) I, like most other Lyme Disease patients, have lost any "saved money", savings accounts, retirement accounts, etc in the desperate fight to get better. Many patients like myself have limited funds and to answer the questions that I am sometimes asked- no I do not know where the resources that I am going to need for today and the rest of this week let alone the months and years ahead (until I am able to work full time again) will come from. I am a christian who is madly in love with her savior and have learned to trust that He will always provide for me - each step of this journey.
Like myself, most Lyme Disease patients are not able to work full time and those that have to struggle to survive day to day. Without a set source of income bank accounts, savings accounts, retirement funds, etc. are quickly depleted. I have been asked by hundreds of people- "didn't you save for a rainy day"? Or... "What about your savings account?". I am going to be incredibly honest here and share something very personal. I had a wonderful savings account (I was a Dave Ramsey's graduate *smiles*) that by year three of this "adventure" was being drained and then at years five and six was completely depleted. (Just to give you a slice of a picture I have spent in the last ten years approximately $200,000 on medical issues, supplies, supplements, travel to doctors, etc. desperately trying to get well!!) I, like most other Lyme Disease patients, have lost any "saved money", savings accounts, retirement accounts, etc in the desperate fight to get better. Many patients like myself have limited funds and to answer the questions that I am sometimes asked- no I do not know where the resources that I am going to need for today and the rest of this week let alone the months and years ahead (until I am able to work full time again) will come from. I am a christian who is madly in love with her savior and have learned to trust that He will always provide for me - each step of this journey.
Lyme Disease patients worry about things that most people don't think about. I will debate for hours and hours each week on which supplement or antibiotic I should do "without" due to money. We have concerns and stresses that are impossible to explain. We have sold everything we can think of, have had to humble ourselves to ask for money and are embarrassed to admit we have done so, and have asked every family member, friend, and stranger for help. In the process most of our relatives and friends have depleted their savings accounts and bank accounts to help us. Let me say what most Lyme Disease patients are thinking about all of the time but are ashamed to admit:
We don't care about the battles of politics and insurance. We don't care about "which treatment" is supposedly the best. We don't care about "this or that". What we do care about is fighting for our lives and our health and most of us are so scared that we can never get better because we do not have financial ability to do so.
And I think it takes absolutely no explanation about why Lyme Disease patients also struggle emotionally. The rigor of this fight takes a courage that I never knew before. It takes bravery to face what is realistically going on in your body and the courage to fight for hope despite the odds. It takes courage to look around and realize that your life has been crushed, accept the loneliness of "friends" walking away, and to come to terms with giving up a job that you loved and to recognize that you might never be able to return to it, to find joy despite the pain, to hold on to Hope when it seems so dark, and to believe (against what you have been told) that you can fight this silent and vicious killer. While there are days of tears and darkness Lyme Disease can not silence love and that is what each and every person fighting Lyme is holding onto.
May is Lyme Disease Awareness Month. Will you please spread the word about this disease and give a BIG hug to those you know who are fighting it? Your kindness in recognizing and spreading the word will touch the hearts of ALL who fight each day.
I, like every "lymie" I know, longs to see a world where "Lyme Disease" are words that are understood by the medical community along with friends and family understanding it. We long to see knowledge that is spread so that someday we will have a cure so that no one else has to live this fight. Thank you so much for spreading the word during this month.
I, like every "lymie" I know, longs to see a world where "Lyme Disease" are words that are understood by the medical community along with friends and family understanding it. We long to see knowledge that is spread so that someday we will have a cure so that no one else has to live this fight. Thank you so much for spreading the word during this month.
Want additional resources on Lyme Disease? Check out "the Lyme Diaries" series on this blog! Interested in reading my personal story with Lyme (and other health issues) you can find it HERE in the notes to the porch section.
Are you a Lyme patient or do you have a loved one walking through this journey and looking for encouragement? You can find my Lyme Books where books are sold and on Amazon or by clicking the links below:
Curious on things you can pray for someone struggling with a Chronic Health Condition? Check out my book:
Do you have questions, or just want to talk? Please feel free to email me - I would love to connect with you!
There have been many, many, many scary times throughout this journey (including my diagnosis of skin Cancer almost six years ago), but heading into a surgery not knowing what would be found was definitely one of the most scary situations I have faced.
Waking up and hearing the news that it was NOT Cancer was an unbelievable gift that I remain humbly grateful for. As I laid in the hospital bed two years ago on this day I remember thinking how overwhelmed I was at the good news after so many years of hearing a bad health report one time after another.
I was thinking about this a lot today as I took a walk earlier. The last 10 days of this treatment round that I have been doing (and finished yesterday!) have been extremely rough physically and even emotionally as there has been a ton of pain and exhaustion. I was in a store earlier today and cried over frozen blueberry choices... *soft smiles* ... This round was messy and difficult and so on this first day of Spring as I was walking I found myself once again just marveling at the simple beauty of the sun and of miracles that happened in the past.
Remembering the miracles of the past gently reminds me of the miracles in the works that are to come.
These past 730 days have been a beautiful gift that I don't take for granted. Everyday is truly a gift that I treasure. This health journey has continued to remind me to value each moment, love big, and live in grace.
Remembering the miracles of the past gently reminds me of the miracles in the works that are to come.
These past 730 days have been a beautiful gift that I don't take for granted. Everyday is truly a gift that I treasure. This health journey has continued to remind me to value each moment, love big, and live in grace.
To you dear friends who are walking in difficult and dark times my heart breaks for you...may light flood your journey in new ways so the darkness disappears and may Spring bring a refreshing start to a new beginning.
"Wrong will be right, when Aslan comes in sight, At the sound of his roar, sorrows will be no more, When he bares his teeth, winter meets its death, And when he shakes his mane, we shall have spring again.”
-CS Lewis, The Chronicles of Narnia-
"Wrong will be right, when Aslan comes in sight, At the sound of his roar, sorrows will be no more, When he bares his teeth, winter meets its death, And when he shakes his mane, we shall have spring again.”
-CS Lewis, The Chronicles of Narnia-
Happy Tuesday friends! I arrived in California yesterday and today I will meet with my main medical team. There have been changes since our last visit in August and I am so grateful to see the full healing that is taking place. Today there will be some important decisions that need to be made on how to best proceed with treatment and I will also be test dosing some new meds which I would covet prayer for. I am a bit apprehensive about this appointment and so I do appreciate your thoughts. Quietly and surely...one slow step at a time healing is coming.
Thank you dear friends for your love, support, and prayers today and for my return trip home tomorrow!
You see, for as long as I can remember I have adored music. It was a constant part of my life...until I couldn't handle sound/noise due to Lyme.
Six years ago in January I was told by a well-known doctor that they had no idea on how to help me or my failing body that was spending more time in the ER than anywhere else (within the next three months I would be diagnosed with Advanced Late Stage Lyme Disease and Cancer among other health issues). Sound & music, a favorite part of my life, (except in very small parts) overwhelmed my collapsing body.
Five years ago I had been with my current medical team for almost 10 months & was starting to SLOWLY begin the long process of healing.
Four years ago this month I came across a Keyboard & fell in love with it. My fingers grazed the keyboard & although I was to weak to play and noise still was difficult, my parents encouraged me to purchase it, "for the future". I purchased it secretly doubting I would remember how to play again even if I ever could.
These past seven years my brain and fingers may have forgotten how to play, and there may have been a LOT of mistakes (hahaha!)but taking a beginning piano lesson last night reminded me my heart remembers my love of music.
Getting to this stage of the healing journey...able to start to follow dreams and long awaited moments like these leaves me speechless.
I know some of you are at those places I was years ago...where the losses and "deaths" are overwhelming, living in doubt about anything in the future. I hope that sharing this small part of my story is an encouragement. It may seem that there is no hope for these "deaths" and feel you have lost who are to the maze of illness, but I promise things will get better. Hold on and keep dreaming of your future dreams even through the tears. You've got this! I am cheering you on!
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If you are walking through the journey of Lyme Disease and are looking for tips and encouragement you can find more on my page, The Lyme Diaries by clicking HERE.
If you would like to read the parts of my journey that I shared about my journey with Lyme (not the entire story) on my page, Notes from the Porch by clicking HERE.
If you are looking for my Lyme Disease books, please see below:
Rebecca's Lyme Disease Books:
*Rebecca's Lyme Disease Books (Other Language Translations):
*Praying through Lyme Disease has also been translated into several other translations. If you would like more information on these resources until they become available for purchase on Amazon, please let me know by emailing me at: caravansonnet@gmail.com. If you are passionate about translating this book into another language please feel free to contact me! Thank you for your interest!*
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