Showing posts with label Cancer & Lymes Awareness. Show all posts
Showing posts with label Cancer & Lymes Awareness. Show all posts
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.
 |
| property of Lyme Disease pictures |
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.
 |
| property of Lyme Disease pictures |
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!
"Nic the PICC" celebrated his 8 week "birthday" this week, and I celebrated 8 weeks closer to healing!
"I have no fear! What is in store for me shall find me self-reliant, undismayed. God grant my only cowardice may be: Afraid to be afraid!"
When I first made the decision to switch my medical care to a Lyme Specialist Clinic in March 2014 I knew one of the things that I needed to find was a place to stay when I need to fly out for my required appointments. For the past four times I have stayed out in California I have stayed at a variety of different hotels but when my mom and I needed to stay for an entire week we searched and searched to find a hotel that was within our price range.
As we continued to research we also were looking and hoping for options that would allow us to have a kitchen so that we could not only save money on food by cooking our meals, but allow us to cook meals that would fit into my strict dietary needs. In addition to this I was hoping for was a way for us to have some sort of suite/2 bedroom option so that I could nap as much as I needed to and my mom wouldn't have to hang outside just to be quiet! *smiles* Unfortunately the price for 2 bedrooms or a suite was just not in our price range without traveling a great distance which due to my health was not an option. After treatment all I wanted to do was come home and sleep (or unfortunately be sick)... not spend two hours in the car each way to my doctors office and after treatment.
Many sweet people have suggested using Air B&B as they have had great success with this. I love this idea and before my health deteriorated I myself used. And while this suggestion is lovely, as a seriously ill gal it is unfortunately not something that I am currently able to do. There are a LOT of factors and criteria that those who are ill need to have met due to environmental illnesses/sensitivities and at this point certain hotels are the best option.
As I continued to research we came across the Hyatt House at Belmont/Redwood Shores and were delighted with what we found. For a little less money then one room at other hotels in the area we were able to get a lovely 2 bedroom suite with a full kitchen!
 |
| House at Belmont/Redwood Shores |
This hotel, which is located along the Silicon Valley's Northern Perimeter is a wonderful place to say for those who are traveling for business and for personal reasons. It is an excellent option for both parties as there are many corporate offices located near the hotel and for those traveling for personal reasons this hotel is a quite and restful retreat away from the hustle and bustle of the nearby city.
 |
| Hyatt House at Belmont/Redwood Shores |
For those who are ill and traveling to the San Francisco area for medical treatment the Hyatt House at Belmont/Redwood Shores is a wonderful option. All of the Hyatt House Hotels are smoke free and this particular hotel has wonderful options for suites that will make you feel like you are living in the comfort of your own home. There is free high-speed internet along with a guest laundry facility and there is a complimentary breakfast buffet that offers many wonderful nutritious choices. One unique thing about the Hyatt House at Belmont/Redwood Shores is that they also offer a complimentary grocery shopping service which can be a wonderful gift to those who are undergoing treatment and not able to shop for themselves. In addition to all of this my mom and I found the hotel staff to be extremely pleasant and kind and the hotel was very quiet.
 |
| House at Belmont/Redwood Shores |
To be fair though and to give a bit of a warning we were disappointed in two aspects of the Hyatt House at Belmont/Redwood Shores. First, we were disappointed in the lack of clear communication regarding the lack of accessibility for those who have disability issues. When we made the appointment we were very clear that I was traveling for treatment and that I do have a disability tag and that it is very difficult for me to walk up and down stairs. We were told that the hotel is "very disability friendly and accommodating" and thought nothing more of it. When we arrived exhausted after airplane delays and traveling for 15 hours, we were unpleasantly surprised to find that we were on the 2nd floor and that there was no elevator access to our room. At 3 o'clock in the morning this literally brought both my precious mama and me to tears. When we went back to the front desk to inquire about this we were told that there was no elevators on the property to reach the 2nd and third floors and that there were no handicap rooms available. As we explained our situation (there was no way that I could climb up with luggage to the 2nd floor and that we had been assured that the hotel was "very disability friendly and accommodating") the staff member at the front desk was kind enough to come over herself to help us carry all of our luggage to our suite. It was very kind of her, but it was extremely disappointing that this occurred. I honestly don't know what would have happened if one of us was in a wheelchair and unable to walk up stairs. To me this was a definitely a disappointment after being told that the hotel was "very disability friendly and accommodating".
A second thing that was disappointing was that when we were making our reservations I asked if the hotel gave any discount for those traveling for medical reasons/treatment. Many hotels do this in the area due to the large amount of hospitals and doctors offices that exist in this part of California. After explaining that I was traveling for treatment for Advanced Late Stage Lyme Disease I was informed, "umm... that is not that serious and no". This was extremely frustrating as one of the leading Lyme Doctors is located in that area. In addition to this the fact that Hyatt House at Belmont/Redwood Shores does not recognize this as a "serious disease" was unprofessional. Hopefully in the future Hyatt House at Belmont/Redwood Shores will reconsider this stance as many people travel from all over the world to this area for treatment for Lyme Disease and this is a very serious disease.
I hope that y'all have found this review of the Hyatt House at Belmont/Redwood Shores helpful! Please let me know if you have any questions regarding this hotel! I would be happy to answer them!
{Disclaimer: The information included on this site is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice. The reader should always consult his or her health care provider to determine the appropriateness of the information for their own situation or if they have any questions regarding a medical condition or treatment plan. Reading the information on this website does not create a physician-patient relationship.}
Happy Thursday friends! It is hard to believe that almost five months ago I started "the Lyme Diaries" series and what a blessing it has been to my little heart to connect with so many of you walking this long journey also. I am so glad that we can encourage each other! I also hope and pray that this helps readers who wonder, "exactly what in the world is Lyme Disease?"! *smiles*
Since sharing my original diagnosis of Lyme Disease in March 2013 and continuing to share updates on my health through my "Notes on the Porch" posts I have received many emails asking a variety of questions on treatment, advice, ideas, and a host of other things. At first I was able to share my limited knowledge with ease because these emails were not so frequent, but since writing the "What is Lyme Disease" post in May these emails, facebook messages, etc. have quadrupled and I struggle to have the time that I want to adequately answer the several hundred emails a week. (Let's be honest... I have not been able to answer even half of them.) So out of that, "the Lyme Diaries" have been born. (If you would like to read all of the posts in "the Lyme Diaries" you can click HERE!)
Since sharing my original diagnosis of Lyme Disease in March 2013 and continuing to share updates on my health through my "Notes on the Porch" posts I have received many emails asking a variety of questions on treatment, advice, ideas, and a host of other things. At first I was able to share my limited knowledge with ease because these emails were not so frequent, but since writing the "What is Lyme Disease" post in May these emails, facebook messages, etc. have quadrupled and I struggle to have the time that I want to adequately answer the several hundred emails a week. (Let's be honest... I have not been able to answer even half of them.) So out of that, "the Lyme Diaries" have been born. (If you would like to read all of the posts in "the Lyme Diaries" you can click HERE!)
So, when I first started "the Lyme Diaries" I shared what a day in the life of having Lyme Disease looked like for me currently. Over the past few months things have changed and so today I wanted to share with y'all an "updated" day in the life as of March. If you follow me on instagram you might remember this post here about laying out my weekly vitamins, herbs, minerals, and oils schedule. I do that every Sunday (to start the new week) and will be sharing a little bit about my planning in the future. While some things change the following is the daily schedule that I have right now:
5:30am- Take ACS Silver
5:50am- Take additional ACS Silver, Drink Aloe Vera Juice, and take supplement
5:50am- Take additional ACS Silver, Drink Aloe Vera Juice, and take supplement
6:00-7:00am- Go back to sleep (or doze). I make it a point to keep my room dark and to lay still even if I can't sleep so that my body is still resting.
7:00-8:00am-Spend time in prayer, and spend specific time praying through the healing verses in the Bible
8:00-8:15am- Stretching, apply oils, and drink 1 bottle of Smartwater
8:30- 9:00am- Eat breakfast, drink Smartwater, take supplements, herbs, and medications
8:30- 9:00am- Eat breakfast, drink Smartwater, take supplements, herbs, and medications
9:00- 9:45am- Fix Detox Bath, Dry Brush, Walking, Drink Aloe Vera Juice, Take Detox Bath
9:45-10:30am- Either work on items for Shop on writing (book, freelance projects, articles, or blog) or have hyperbaric oxygen appointments, doctors appointments, acupuncture or reflexology appointments
10:30am- supplements and apply oils, drink Smartwater (with apple cider vinegar)
10:30am- 11:30am- Nap (or doctors appointments)
11:30am- Eat snack, take supplements, medications, and apply oils and detox procedures
11:50am-12:15pm- Stretching and follow "exercise regime" (my exercise regime is now working on doing certain yoga poses and some small walking steps) - Everyday I work to strengthen my body somehow!
12:15-1:30pm- Writing, Answering Emails, Blog Writing, or working on Shop orders
1:30-2:00pm- Eat Lunch, take supplements, medications, apply oils, and drink Smartwater
2:00-2:30pm- Answer shop emails, work on organizing shop orders, or writing projects and take pictures for the shop or IG
2:30pm- supplements and apply oils
2:30-4:30pm- Nap (or doctors appointments)
4:30pm- Snack and take supplements, medications, and apply oils, drink Smartwater (with apple cider vinegar)
4:30-5:30pm- Work on Shop orders, Package up shop orders, and Create (either in the scrapbook room or from my bed depending on how I am feeling)
5:30pm- supplements and apply oils
5:30-6:15pm- Fix Detox Bath, Dry Brush, Light Stretching, Drink Aloe Vera Juice, Take Detox Bath
6:15-6:30pm- rest after second detox bath
6:30-7:00pm- Eat dinner, take supplements, medications, and apply oils, drink Smartwater
7:00 to (usually 8:00pm sometimes 9:00pm)- Watch TV (if my sensory nerves can handle it otherwise I read in bed, pray, spend time with the Lord memorizing scripture), answer emails, work on shop orders, create things for shop, or work on writing projects
8:00-9:00pm-Take nighttime supplements, medications, apply oils and head to bed
This is pretty much my life everyday. *smiles* And yes, it is that incredibly regimented in order to get in every single supplement, oil, and medication that I need to take in. While there are a few exceptions (once or twice a week I make a point to chat with friends, etc.) this is pretty much how life looks right now. There are some days where I am in bed by 6:30pm (literally) and other days where I am up till 10:00pm simply due to different medications. BUT I hope this is helpful in understanding how regimented the life of a person who has Lyme Disease is. I always kind of smile wryly when I receive the question, "so what do you all day?" or "what does your day look like?". I think that sometimes people think I am just laying in bed eating bon-bon's all day long. *smiles* BUT in all seriousness everything that I do is focused on getting my health back. Fighting for your health is a FULL TIME JOB and its a job that you do not want to lose. While this is a very rigorous schedule (and a very isolating one!) it has also provided me so much opportunities to spend hours and hours in prayer and with the Lord and that has been a blessing in this journey!
Well friends, as I said at the beginning I hope that this series is of help in understanding more about Lyme Disease and helps answer your questions! If there is anything specific that you would like to have answered let me know and I will do my best to write a post about it!!
Happy Thursday y'all!
When I was first diagnosed with Lyme Disease I had a very emotional response to the news. It was not a pretty sight, and to be frank it wasn't "accepting" at all. I fit the complete profile of a lady who went through the stages of grief.
For many, like myself, who are diagnosed with Lyme Disease, the process to get the "official diagnosis" is a long and winding trail that has taken years to track down. In my case I had seen (across the country) 273 different specialists and "top doctors" before I was diagnosed. I had been told by countless GI practitioners that the intense pain that I was experiencing was simply "in my head" and that the reason that I wasn't eating properly was because I was "seeking attention". I had been told by countless doctors that I should seek psychological help and that it was simply "stress" that was causing my confusing symptoms. I had been told that my diagnosis of Chronic Fatigue and Fibromyalgia were correct and that I had a very "complex" case of both of these and simply needed to "rest". It was a long tiring road to get a diagnosis and when it was suggested that I spend several hundred dollars to be tested for Lyme I at first dismissed the idea. I had had Lyme in 2007, been treated at John Hopkins Lyme Center, and there was no way that I could still be dealing with it. At the same time, in the back of my head though, I had a sinking feeling that was exactly what was going on. The strange symptoms that had persisted, morphed, and caused tremendous havoc on my body for 6 years suddenly seemed to not be so strange and seemed to have a startling pattern. I got the tests back on my 33rd birthday. I was "positive" in every test and the tests didn't looks "so pretty". I had Advanced Late Stage Lyme Disease.
3 Months later I was diagnosed with Skin Cancer.
In many ways, as I say in my book "Praying through Lyme Disease", my family and I rejoiced that there was finally an answer, but I also experienced a range of emotions as I was furious with the medical community and overwhelmed with where to go from that point on. Ironically, when I first started writing about Lyme Disease on this blog I simply shared that I had been diagnosed because there had been a rumor going around and some former students were concerned because they had heard I had Cancer. (At that point I did not know that I was in fact fighting Cancer also.)
My point is in sharing this part of the background of the story that I was desperate to find answers and to get my life back. I was back in graduate school obtaining my second masters at the time and I thought, "well I know how to research, I will just research all that I can". I was veracious about research and read every single thing that I could get my hands on. A lot of it wasn't so encouraging and a lot of the stories that I read brought tears to my eyes. A lot of people that I tried connecting with were "secretive" in their knowledge and information as high insurance liability has forced many Lyme doctors to "work underground" and patients were sworn to secrecy. Within three weeks of my diagnosis I contacted 73 of the leading Lyme Specialists and learned quickly that I was looking at spending approximately $2000 to just see the physician for a check up (and this didn't include the lab work, the specialized testing, the treatment, etc.). I learned quickly that most Lyme Doctors do not take insurance and while I could submit forms to my insurance carrier on my own, most would not acknowledge the doctor and therefore I would not be reimbursed. I was told by hundreds of people that I contacted over the internet that "they didn't want to be discouraging but that my hopes of returning to my normal life were over".
Those first few weeks were incredibly disheartening and to add to that trauma (the only word I can use to describe being diagnosed with a life threatening illness and being told that there is little hope) I lived most of the year in the south. The south where doctors informed me that "there is no such thing as Lyme Disease". The south where the newspaper wrote that "Lyme Disease is only in the north and ticks stop at the Mason-Dixon line" (yes, that is a quote!). The south where my pharmacist had no idea what medications should be used for Lyme Disease or why certain drugs are dangerous for Lyme patients. The south where countless specialists (that I was seeing at that point) told me that I should be "concerned" that I was given such a "inaccurate" diagnosis".
It was a long long road at the beginning. There were tons of tears, tons of overwhelming moments and tons of times where my parents and I just looked at each other, our mouths saying nothing, our eyes saying everything. Even now, as I write this, I still have tears as it was an incredibly painful, scary, and lonely time. If you have ever had a family member diagnosed with a serious illness you know exactly what I am talking about.
As the emotion started to settle into a state that was new to all of us, we made the decision that a "complimentary" approach would be best for my case. At that point after the research that I had done, we chose the Whitaker Wellness Institute in California. It was a difficult decision but one that we believed in and with the help of generous friends and family members who donated $2,000, I spent three weeks out in Newport Beach, California receiving treatment. While I was out there (alone as we did not have the funds for anyone to come with me) I was diagnosed with Cancer, had surgery, and continued to receive treatment for Lyme Disease, all while being thousands of miles away from my family. When I arrived in California I had difficulty walking (mostly used a wheelchair), couldn't eat any foods except for a few specific ones, my digestive system had crashed, and I was seriously (and non dramatically) near death. (In fact, one of the first things I asked the doctor was that I wanted her to be "straight with me" as I wanted to go home if I didn't have much time left.) 3 Weeks and $14,000 later I was on my way home able to walk and eat a well rounded diet after three weeks of hyperbaric oxygen and vitamin c treatments. I felt like a "new woman" and was incredibly excited for the future. My doctor even assured me that she thought that I would be returning to work full time by winter 2014.
Obviously this was not the case.
When I had arrived at Whitaker Wellness Institute I had chosen them because I believed that there would be a "complimentary approach". Unfortunately, I was to discover that the "complimentary approach" was for me to continue to go back to Whitaker Wellness Institute several times a year to receive these treatments and they did not believe in antibiotic treatment. With limited finances there was no way that this would be possible. As fall 2013 approached November it became obvious that the medical care that I was receiving out there would not be "transferable" to a long distance relationship. The fall 2013 was incredibly difficult not just physically (where I was going to the ER at least once a week) but also emotionally. When my doctor became difficult to work with, I had to make the difficult decision to leave that doctor. I wrote in a post here about why as a seriously ill patient this is such a difficult thing to deal with. December 2013 was probably the most difficult and terrifying month of my entire life as I had several hospital stays and lost several acquaintances and friends to various illnesses. In addition to this, I experienced the heartbreak and loneliness that often accompanies long-term or chronic illness where friends and family members that I thought would support me on this journey "disappeared". It was emotionally devastating.
I was also told by several well known hospitals who were reviewing my case (including Mayo, Cleveland Clinic, and MD Anderson) that there was "nothing that they could do" as my case was to far advanced. As January 2014 came and went it was obvious that my health was rapidly declining and we had no idea where to go from there but the Lord brought a new doctor into the picture (also out in California). While February was difficult at the beginning, the cruise was a blessing and really a time of reminding me to keep fighting. And then I flew out to California for my appointment and was given an entirely new plan.
I was also told by several well known hospitals who were reviewing my case (including Mayo, Cleveland Clinic, and MD Anderson) that there was "nothing that they could do" as my case was to far advanced. As January 2014 came and went it was obvious that my health was rapidly declining and we had no idea where to go from there but the Lord brought a new doctor into the picture (also out in California). While February was difficult at the beginning, the cruise was a blessing and really a time of reminding me to keep fighting. And then I flew out to California for my appointment and was given an entirely new plan.
This plan included results from blood work that had not been done previously, the shock of finding out that I had an environmental illness on top of Lyme and Cancer, the reality of learning that I did have the MTHFR gene mutation (which is important to understand in illness, especially with Lyme Disease), and the fact that I also had Mast Cell Disease (something that at the time I did not share and have not shared until now), plus dealing with some other co-infections and that I had a serious case of Mono was overwhelming.
At the same time though I was at peace. For me, my prayers of finding the right medical team had been answered. It was a long long road to get to the right medical team but the Lord was faithful throughout the journey. As long as it took I can still look back and thank the Lord for the "detours" that led me to my team.
My greatest advice to any newly diagnosed "lymie" that I talk with is to give yourself permission to cry, lean on your support team, and breathe. Don't give up when you hear all of the discouraging news that you will hear at the beginning. Don't give up if you live in an area where Lyme is not accepted or understood yet. Don't give up when medical doctors tell you that "there is nothing they can do". Don't give up when you are told "it is all in your head". Don't give up on the days that you feel like giving up.
I truly don't believe that with such a complex and misunderstood disease that there is "one way of healing" for every Lyme patient. I think that you need to understand your body, understand the complex situations and ways that it has caused havoc on your body and make decisions that are right for you. Find the doctors and the medical team that is going to treat you like an individual and who are not just trying to treat symptoms but help you beat this beast. Cling to the people that walk this journey with you and make peace with the fact that there are many people (especially many that you never thought) who will walk away. For me it was heartbreaking to have one of my best friends (for over 10 years) and many others simply desert me on this journey. But sweet friends, commit that to the Lord and move on. Use your energy for healing and walk in forgiveness.
The time after the diagnosis is overwhelming and incredibly scary. Many times the months and years after the diagnosis are incredibly complicated, financially draining, and emotionally taxing. It can be incredibly tiring to even try to explain what Lyme Disease is to friends and loved ones, let alone understand it yourself. Hang in there sweet friends. Take one day at a time. Don't give up.
You can do this.
-------------------------------------------------------------------------------------------------------------
{Disclaimer: The information included on this site is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice. The reader should always consult his or her health care provider to determine the appropriateness of the information for their own situation or if they have any questions regarding a medical condition or treatment plan. Reading the information on this website does not create a physician-patient relationship.}
At the same time though I was at peace. For me, my prayers of finding the right medical team had been answered. It was a long long road to get to the right medical team but the Lord was faithful throughout the journey. As long as it took I can still look back and thank the Lord for the "detours" that led me to my team.
My greatest advice to any newly diagnosed "lymie" that I talk with is to give yourself permission to cry, lean on your support team, and breathe. Don't give up when you hear all of the discouraging news that you will hear at the beginning. Don't give up if you live in an area where Lyme is not accepted or understood yet. Don't give up when medical doctors tell you that "there is nothing they can do". Don't give up when you are told "it is all in your head". Don't give up on the days that you feel like giving up.
I truly don't believe that with such a complex and misunderstood disease that there is "one way of healing" for every Lyme patient. I think that you need to understand your body, understand the complex situations and ways that it has caused havoc on your body and make decisions that are right for you. Find the doctors and the medical team that is going to treat you like an individual and who are not just trying to treat symptoms but help you beat this beast. Cling to the people that walk this journey with you and make peace with the fact that there are many people (especially many that you never thought) who will walk away. For me it was heartbreaking to have one of my best friends (for over 10 years) and many others simply desert me on this journey. But sweet friends, commit that to the Lord and move on. Use your energy for healing and walk in forgiveness.
The time after the diagnosis is overwhelming and incredibly scary. Many times the months and years after the diagnosis are incredibly complicated, financially draining, and emotionally taxing. It can be incredibly tiring to even try to explain what Lyme Disease is to friends and loved ones, let alone understand it yourself. Hang in there sweet friends. Take one day at a time. Don't give up.
You can do this.
-------------------------------------------------------------------------------------------------------------
{Disclaimer: The information included on this site is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice. The reader should always consult his or her health care provider to determine the appropriateness of the information for their own situation or if they have any questions regarding a medical condition or treatment plan. Reading the information on this website does not create a physician-patient relationship.}
Thank you so much for all of your support of 8 hours on the 8th! We were able to spread the word on Lyme Disease and Rebecca's Run! It was personally so encouraging to see so many friends and bloggy world acquaintances posting the picture on social media sites and spreading the love! On a day that could have felt very isolating (due to a variety of reasons) you reminded me with your kindness that I am NOT alone in this journey! Thank you so much friends for taking the time to spread the word!
We also received a kind donation so that we are not at 20% of our goal! Thank you again for your kindness and love!
Blessings,
In this journey of fighting Lyme Disease I am always amazed at the compassionate and kind support from those that choose to "step into" this journey that my family is on. Sometimes this is a close friend or family member but many times these people have no prior relationship with me personally and have chosen to "get involved" in one way or another. This is definitely the case with the company that my sister works for. Last year for Rebecca's Run several of her co-workers and her boss donated financially to the run without ever having met me. This year this company has gone WAY beyond last years amazing support and will be donating the t-shirts and is also taking the time to advertise and support the run. A "thank you" from far away could never begin to express my humble and speechless gratitude for ALL of the people that have been supportive on this journey but please know that every act of kindness- big or small touches me and my hurting family.
Sport Seasons has written a blog post about the run which you can find HERE.
Thank you so much to every person who continues to support me on this journey- your friendships and love are such a blessing!
Find out more about Rebecca's Run HERE or join the facebook page HERE to keep up to date on all of the details. Want to find out more about 8 hours on the 8th? Click HERE! Want to donate? 50% of ALL of our donations will be given to Lyme Light Foundation. Donate HERE!
Thank you again for everything Sport Seasons!! You have been such a blessing!!
As I mentioned at the beginning of this year, I never started off in this journey to become a health activist. In fact, as private as I am I probably never would have started blogging had I known that shortly after I did I would have been diagnosed with two major diseases in the span of 5 months. BUT here is where the Lord has me and I do hope to use this blog to share about some of the issues (Lyme Disease especially) that I am passionate about in hopes that it will help and encourage others. As the founder of SEEN Gathering my heart is with encouraging the hearts of people who are struggling with chronic illness. Along that note I am honored to have applied for the WEGO Health Activist Speakers Bureau and hope to share my story with others to encourage them. (Thank goodness for internet access for those of us who are struggling to get out of bed on difficult days! *smiles*) I mention this because I know some of you that read this blog are dealing with health issues and might be
interested in learning more about it as well – it’s a great way for Health
Activists to share our stories, raise awareness and get the word out about the
work we’re doing. Your story DOES matter and what you have to say can change the world for someone. Members of
the WEGO Health Activist Speakers Bureau receive exclusive invitations to
present at conferences, speak to members of the media, and be featured on WEGO
Health. Interested
in joining the WEGO Health Activist Speakers Bureau? Apply today! It only takes a few minutes and
they’ll email you as soon as they have opportunities relevant to you and your
interests.
I love how bloggy world allows people to connect in deep and personal ways. I think it must be because of the way that people share deeply personal struggles and issues in order to encourage others who might be going through the same or similar issues. In addition to this, in the midst of the vulnerability we have the opportunity not only to connect, but to encourage, support, pray, and walk through the joy and the difficult times in each others journey's. Caroline, from her the amazing blog, "In Due Time" has done all of this and more. She not only has supported me through sweet emails, countless prayers, encouraging notes & messages, RUNNING for "Rebecca's Run", contributing financially to my health costs, and her AMAZING kind words and encouragement but her blog encourages me every week. I often come away crying because what she has written is a fresh breath of love and she exemplifies Jesus through her writing.
I asked her to share about something horrible that has happened to her family several months ago. Did you know that May is Brain Cancer Awareness Month? Me neither until this year and due to this story. But now I do. And I know that I will never forget again. My heart breaks for this sweet family and continues to pray for healing to their broken hearts. Thank you so much Caroline for sharing with us today...
_________________________________________________________________
My world came crashing down when I got a call from my sister-in-law that my 2.5 year old nephew had just come out of an MRI which revealed that he had a brain tumor. I will never forget the moments that followed along with the next 15 days.
After what a pediatrician just thought was a flu, stomach bug, or virus never got better, he decided to order an MRI for my nephew. He had been vomiting for weeks, but still acted as any other young boy - he continued to run around and play.
Kai was admitted immediately to the hospital and two days later had an emergency 4 hour brain surgery. 95% of the tumor was removed and for that we were so grateful. But, 5 days later when we got the biopsy results, we were crushed. He was diagnosed with ATRT, It is so rare that there are only 30 new cases in the US each year. It is highly malignant and rare. Kai was able to come home for 3 days, but when the swelling got worse, he was taken back to the hospital. He had two more surgeries, but because of the aggressiveness of the tumor, he never woke up from the last (3rd) surgery. Just a few days later, March 21, which was 15 days after the original MRI, he passed away in his hospital bed with his mom and dad (my brother and sister-in-law) in the room with him.
He is now with Jesus, pain and cancer free.
Research is still being done for ATRT. There is no standard trial for ATRT yet, but he was going to try the Dana Farber treatment method which would include 52 weeks of chemo, radiation, and stem-cell transplant. Because it was so aggressive, we didn't even get the chance to start this protocol.
All of a sudden something I didn't know much about has rocked my world. This month, brain tumor awareness month, I am going grey in honor of Kai. We have participated in two Head for the Cure races in an effort to raise money brain cancer research.
Although our little Kai is gone and we are absolutely devastated, we are still choosing to trust the Lord's goodness. We know He will carry us through each hard day and that He will bring joy in the morning. As my sister-in-law posted when Kai passed away, we are making the daily decision that love wins.
If you want to do more to support brain tumor awareness month, you can stop by my blog to learn more facts and about how I am going grey.
Thank you SO much Rebecca for walking this journey with us and allowing me to share about brain cancer.
___________________________________________________________
Want to read more and learn more y'all? Click HERE to read more on Caroline's blog.
Hi y'all! Thank you so much for your patience as we continue to work to mail out ALL of the AMAZING orders of the "Bite Back" bracelets! We are so grateful for ALL of your support! For those of you that ordered in early march the last of those orders will go out Monday! Thank you so much for your patience!!
Did you want to order one and haven't yet? Each bracelet is only $3.00 & ALL proceeds are going to treatment and medical bills! You can read more about these bracelets by HERE or simply click on the "buy now" button below!
Did you want to order one and haven't yet? Each bracelet is only $3.00 & ALL proceeds are going to treatment and medical bills! You can read more about these bracelets by HERE or simply click on the "buy now" button below!
THANK YOU again so much for your kind support, your sweet love, and all of your faithful prayers throughout this journey!
Subscribe to:
Comments (Atom)
