Three Women Share What It’s Really Like to Live with Lyme Disease on Reader’s Digest

Yesterday, Reader’s Digest published an article I wrote on three, incredible women battling Lyme disease. I am so proud to call these women my friends. To view the piece on the Reader’s Digest website, please click here. Feel free to leave a comment about your own struggles with Lyme disease.

A Life On Pause

It’s nighttime. Lying in bed wide-eyed and frustrated as the clock ticks, you pray for just a few hours of precious sleep. Insomnia plagues you. Your usual sleep medications have no effect on you tonight. It’s as if you just swallowed some candy instead of a sleeping pill. Tears stream down your cheeks. You bury your face into your pillow and weep softly so as not to wake anyone else. Is this really happening again? As the night bleeds into yet another day, time becomes irrelevant as there is never any period of rest. The sleep deprivation is a cruel form of torture for you with no end in sight anytime soon.

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If you could nap during the day, the constant sleeplessness might be easier to tolerate. Lyme Disease wiped out your ability to nap years ago and no one has any solutions for you. Some people want riches or fame, but you, you just want a brain that functions normally. To have a brain that sleeps, isn’t foggy, jumbled or forgetful, is your greatest wish.

A streak of bright, orange light bursts through the curtains. Damn it! It’s morning now. Utterly depleted, you continue with your idle rest in bed as you wait for the alarm to go off alerting you to take your medications.

Almost every medication prescribed to you requires you to take it on an empty stomach. These are instructions you find particularly challenging to follow. Sometimes, you wait more than two hours before eating breakfast just to squeeze in your morning handful of pills.

Invariably, some medication or supplement gets missed. You panic as you rework your entire medication schedule for the day. There is no room for error anywhere. Hopefully, tomorrow you will get back on track. Treatment for Chronic or Late Stage Lyme Disease is regimented and intense. You persist through these demanding protocols in the hopes of having a normal life again.

With the multitude of symptoms you experience daily, you’ve become too ill to work. Career advancement is not a realistic option for you anymore. No landing your dream job. No starting your own business. The longer you struggle with Lyme Disease, the further away the reality seems that you will ever go back to what you once were.

Lyme Disease can be disabling although some medical and political establishments will tell you it’s not even a real disease. Oh, how you would love if this disease were fake, a figment conjured up by your wild imagination. That somehow seems treatable and much less expensive.

But it’s not an elaborate fabrication or something you’ve concocted for attention. You’re not lazy, unmotivated or a head case. You are not choosing sickness so you can lay in bed all day. This illness is real and it comes with a hefty price tag.

If you have Lyme Disease, you will spend all of your money – every last cent – trying to get well. You will invest tens-of-thousands, if not, hundreds-of-thousands, of dollars on trying to save your life. If you’ve had this illness long enough, you’ve maxed out your credit cards, probably drained your savings, pensions, IRAs or 401k’s. Evidence of a life before Lyme quickly vanishes.

Physicians most literate in treating Lyme Disease are not covered by your insurance. To get well, you will likely need a multifaceted approach to treatment, including regular testing, prescription medications, supplements, and herbal medications. The effort to repair the damage that chronic Lyme Disease has caused is costly, burdensome and at an enormous out-of-pocket expense to you and your family.

Yet, you continually find the strength to persevere. You hold on to hope with fists clenched so tight your knuckles change color. Your hope is in a better quality of life. Your hope is in a future filled with joy and less suffering.

During your battle with Lyme Disease, you have not been able to attend weddings, baby showers, family holidays, or outings with friends. You have had to say, “no,” more than you say, “yes.” By now, you feel the pain of isolation. You wish people understood your illness better or, at the very least, that you had some special superpower that allowed you to articulate the torment raging on inside your body.

You will continue to battle this illness with everything you’ve got, but there’s very little energy left (if any) beyond dragging yourself through each day. You need continued help and support no matter how long this journey takes, but you find most relationships cannot endure this level of hardship over the long haul. Your heart badly hurts as you sense relationships beginning to slip away.

Sadly, most aspects of your life are on hold indefinitely due to this illness. Recovery is long. Thoughts about dating, getting married or planning for a family fall to the wayside. You feel this illness stealing some of life’s most precious opportunities from you as you wait for the moment when you might one day be well again. The future seems so uncertain.

Like so many other chronic Lyme patients, you constantly feel the slow, suffocating effects of a life on pause.

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Note: May is Lyme Disease Awareness month. I see so many friends struggling right now that I wrote this piece in an effort to release some feelings I’ve had buried inside of me for a long time. This is my story, but it also includes the experiences of so many others I have talked with in the past few years. Many have not yet found a way to communicate the pain and heartache that comes from having this illness. I hope you will take a moment to read A Life On Pause. 

Blogging Saved My Life

© Christian Schnettelker

© Christian Schnettelker

Okay, so maybe blogging didn’t literally save my life. It has however been a crucial part of my healing journey this past year.

I recently passed my first anniversary (or blogiversary) on The Lyme Road. When I began the blog, I intended on a place where I could process my feelings and work through the pain and difficulty of a prolonged, gloomy season in my life. I hoped that by writing bits and pieces of my story, I could boost my spirits. I wanted to let go of the past and embrace the possibilities of my future.

My intention was to inspire myself to keep believing that I could live joyfully while enduring a chronic illness. On October 26th, 2013, I pressed “Publish” for my first post. Much to my surprise, friends, family and strangers read the post. Even my very busy doctor took a moment out of his day to view it and write a comment!

I never really considered others might be interested in the story I had to tell. I didn’t imagine people would actually be following my progress! I am honored that my story has served as encouragement to others. I am so grateful to all of you who have continued to read my posts, comment on them, email and message me!

Blogging has been an amazing platform to help me cope and aid in the healing process.

8 Ways Blogging has Been Crucial to My Healing Journey :

1. It boosted my self-esteem.

I had lost a lot of my life to illness. My confidence had been badly shaken. Blogging helped me realize that I still had gifts and talents to share with the world that weren’t dependent on whether I was well. I accomplished a post if I just kept working a little at a time.

2. It gave writing back to me.

When I was a child, I used to spend hours in my room writing story after story with abandon. In growing up, getting older and getting a real job, I lost that passion. Years of text books, heavy with medical and therapy jargon, had stifled my creativity. Even though I may only ever make enough money for a monthly trip to Chipotle, blogging has allowed me an avenue where I can explore my creative side. It feels so good be to writing again!

3. It’s provided me with free therapy.

I held on tightly to painful memories not knowing how to safely release them. Through the power of words, I was able to cry and grieve my heart’s most distressing moments. The result has been a profound understanding that although there is difficulty in life, hope can fill me. That’s ultimately what I want for myself–a life filled with hope.

4. It gave me a social life again.

I do my blogging at home while sitting on the couch or lying in bed. I could not have guessed that I would meet such a kind, helpful group of people online. I am lucky enough to have developed real friendships with several of these people. I know that as I connect and network with other bloggers, I will continue to meet some wonderful people.

5. It allowed me to take risks.

I have always loved to take a risk, learn a new skill or try something different. For years, I had to extinguish that desire and make the pursuit of healing my number one priority. I was too weak, too sick and too tired to dream of embarking on an adventure. Blogging has help me to find courage to try something new again.

Shortly after I began writing, I guest posted on a few other blogs. Then, I decided to take a chance and submit a few posts to Mind Body Green, a huge health and wellness website…

6. And blogging showed me that I still have a lot to learn.

The first post I sent to Mind Body Green was not the easily sharable format they use on their website. My second post to them sounded like I was trying to sell something. I realized I needed to take time to learn and develop a writing style that is unique to me.

I have time to make mistakes, learn from them and take more risks.

7. It taught me that support can come from unexpected places.

Of course, I expected that my family and a few close friends would read my blog. What I did not expect however, is that support, empathy and encouraging words would come from other people’s mothers, old high school classmates, ex-colleagues and strangers from around the world! It truly has been a blessing to me and a source of great comfort.

8. It has helped me to see I have a choice.

I have a choice to not let my heart be in turmoil over my current circumstances. I can daily choose to renew my thinking by focusing on good, pure and lovely things. In almost every post I write, I am attempting to illustrate this simple equation:

Focusing on the good equals more peace in my life.

Focusing on the bad equals more anxiety and confusion.

Such a simple formula!

 

THE DIZZYING SPIRAL THAT IS LYME DISEASE

The Dizzying Spiral that is Lyme Disease:

 

The Dizzying Spiral

 

To give you an idea, I have paid out-of-pocket for every single doctor’s visit, lab test, medication, supplement, herb and Lyme treatment for the past 4 years, amounting to tens of thousands of dollars.

 

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All illnesses have their difficulties.  What makes chronic Lyme unique from other diseases though is that expenses are almost always out-of-pocket.  Most insurance companies do not cover the cost of treatment for chronic Lyme cases.  This places an unimaginable amount of financial burden and strain on a patient and their family year after year.  A recent study revealed that over 40% of Lyme Disease patient’s are unable to work.  This same study demonstrated that chronic Lyme sufferers have a quality of life that is worse than many other illnesses like congestive heart failure, diabetes, multiple sclerosis and arthritis.

 

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Please take this illness seriously. Learn how to protect yourselves. Visit International Lyme and Associated Diseases Society (ILADS)  or Tick-Borne Disease Alliance (TBDA)  for more info.

 

THE MAYDAY PROJECT: A BRIEF RECAP

One week ago, May 22nd and 23rd, several Lyme fighters and Lyme Disease supporters gathered at the headquarters of the IDSA in Arlington, VA for the fourth annual Mayday Project protest. Those of us not able to attend the protest in-person were able to participate by faxing, emailing and using social media to deliver a 24 page document to the IDSA suggesting that they redefine the guidelines for the diagnosis and treatment of Lyme Disease.  To see the document in it’s entirety, click here.

Our mission was to persuade the IDSA to “accept persistent Lyme disease as a diagnosis” (The Mayday Project, facebook.com, 23 May 2014. Web. 23 May 2014).

The Mayday Project further states “This will open the door for people to do research into the chronic form of the disease and hopefully produce a cure. This is what we ultimately want” (facebook.com, 23 May 2014. Web. 23 May 2014).

Fox 5 DC came to cover the event and has since produced two great segments on the devastating effects of chronic Lyme Disease and the controversial methods of transmission for this illness.  Please click on the following links below to watch the videos.

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I am so grateful to The Mayday Project, the people who attended this year’s protest and to those who helped to advance the cause of Lyme Disease (many while seriously ill) by contacting the IDSA through various forms of communication.  It’s seems our voices are beginning to be heard and I hope and pray that our illness will finally be recognized and patient’s will have faster, better access to appropriate medical care.  Perhaps next year I will be in better health and able to participate in the protests in-person.  Between the local and national protests, this year’s Lyme Disease Awareness Month was a great success.

CHICAGO WORLD WIDE LYME PROTEST DAYS

May is Lyme Disease Awareness month.  Today, May 16th, on a rainy and unseasonably cold day in Chicago, along with some of my fellow Lyme fighters, I went downtown for a peaceful protest in front of the Illinois State Medical Society Headquarters on the first day of a two-day event.

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My friend in Lyme, Jenny, (yes, there were two of us) met me and brought me a lime green t-shirt to wear, with “Team Jenny” written on the back.  She and much of her family, spent the last few days preparing signs and t-shirts.  The event organizers assembled tote bags filled with Continue reading

9 THINGS YOU WON’T SEE POSTED ON MY FACEBOOK PAGE ABOUT LYME DISEASE…UNTIL NOW

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When I began treatment 6 months ago, I made a decision to share my successes publicly, via social media and blogging, with my friends and family.  I had hoped to paint a picture of someone who could overcome the adversity in her life and emerge changed and victorious.  The truth however is that recovery is very tricky, with lots of twists and turns along the way.  There is much trial and error involved in finding a treatment strategy that will yield even slight improvements.  I often do not post about these difficulties, shielding my friends and family from seeing the full spectrum of just how destructive this illness is.  After reading a recent statistic from the online medical journal PLOS that Lyme Disease is 6 times more prevalent than AIDS in the US, I knew I had to convey the most realistic image of what battling Chronic Lyme Disease is really like.  With Lyme Disease becoming a global pandemic, my story could very easily be the story of you or someone close to you.  So here ya go.  The 9 truths about this illness you won’t see mentioned on my Facebook page…until now.

1.  I am still homebound more than 75% of the time.

Since I have chosen to really only reveal the moments that I feel are celebratory in nature, no one sees the moments where I am too weak, fatigued or in too much pain to get out of bed for days and sometimes even weeks.  I am not a partaker in the selfie craze and don’t post sick picks.  Believe me!  Although you are not seeing pics of me in the throws of my illness, I am still very much in the midst of fighting this battle and unless remission comes to pass, I will likely be fighting it for a very long time.

2.  I am still very isolated by this illness

As you can imagine, since I am primarily homebound, the majority of my time is still spent alone.  Only on a rare occasion will I feel well enough to see someone in-person.  I don’t say this to invoke pity but rather to encourage those who may know someone who is  chronically ill to reach out to them from time to time.  It does not require much.  Just let them know they are still cared for and not forgotten.

3.  I wake up everyday, take inventory of how I feel and decide if there is enough fuel in the tank to do something or go somewhere.

Most of the time there is not. The days I feel bad still outweigh the days I feel good.  Instead, I stay home and try to come up with creative ways (like blogging) to pass the time until a day comes that I can “do” something again- which is an excellent lead in to my next point.

4.  I often have to give myself a pep talk just to get out of the house.

Fatigue, pain, a burning brain and spinal cord are constantly present.  Somedays I have the capacity to tolerate this and can rally myself to go out for a few hours here and there.  These times are still in the minority though but I hope with continued treatment, leaving the house will one day be something I can do without much thought.

5.  You will likely not be able to tell if I’m having a “good day” or a “bad day” by a photo.

Oddly enough, some of my best pics were taken on the worst days.  This is most likely due to the fact that knowing I felt so ill, I made my hubby take 25 pics before I finally found one that I deemed “postable.”  If you saw the other 24, you probably could guess I wasn’t feeling well that day.

6  The road to recovery is actually quite bumpy.

There is no one-size fits all approach to treatment.  Some use IV antibiotics.  Others take oral antibiotics.  Still others, myself included, are using a combination of medications, supplements and herbal antimicrobials.  Nearly all of us will see several doctors over the course of our illness and try various treatment approaches until we hopefully find one that begins to get us on a healing path.  Even when we find a suitable treatment we must contend with recurring Herxheimer reactions, or Herx for short.  This is a sudden and exaggerated inflammatory response caused when injured or dead bacteria release their endotoxins into the blood and tissues faster than the body can comfortably handle it. An exacerbation of old symptoms, as well as a flare up of new symptoms, can occur.  The very treatments that aim to make us well can, for a period, make us feel much sicker.

7.  Bizarre symptoms pop up almost daily.

When my brain starts burning, that’s weird.  When my facial muscle starts twitching, that’s annoyingly strange.  When I awake in the morning to an ankle that feels like it was broken sometime during the night, that’s just bizarre.  The sudden and exaggerated inflammatory response that I spoke about in number 7, can cause a wide range of migrating and unpredictable symptoms.  Be glad I do not post those on Facebook.  You would not be able to keep up with them!

8.  Lyme Disease treatment is most likely not covered by insurance and patient’s are forced to pay out-of-pocket for some or all (in my case ALL) of my treatments.

Yes, you read that correctly.  I have paid out-of-pocket for every single doctor’s visit, lab test, medication, supplement, herb and Lyme treatment I have received for the last 4 years.  Sadly, my scenario is not uncommon as Lyme Disease places an enormous financial burden on those of us who have it.  This sum of money amounts to hundreds if not thousands of dollars per month depending on the treatment a patient may be undergoing.  43% of us are not able to work (myself included) due to the severity of our illness making the financial strain even more stressful.

9.  Despite me being ill, my husband is still as lucky to have me as I am to have him.

In the last few years, I have had several people make the comments to me, “You are lucky your husband stays with you.” or, “You are lucky to have him.”  Yes, those statements are true, however I am not less of a person because I am ill.  I still have the same heart, interests, sense of humor, etc.  We still spend hours supporting one another and making each other laugh to the point of tears.  My husband does not look at me and see a sick person.  He sees me and notices that my uniqueness has not disappeared.

Well, there you have it.  The inside scoop. An honest look at what living with Chronic Lyme Disease is truly like.  You will likely not see these topics appear on my Facebook page anytime soon, but know that my journey is far from over.  The very essence of having a chronic illness is that it is invariably, going to recur again and again.  Ingrained in me is the desire to persist so I will still continue to fight in the hopes of one day achieving a full recovery.  I look forward to celebrating many more healing milestones and experiencing life in full again with my friends and family.

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31 FACTS ABOUT LYME DISEASE

Today, May 1st, kicks off Lyme Disease Awareness Month. I will be tweeting a new fact about this disabling illness everyday in an attempt to educate the public and the medical profession about the devastating effects of this disease. I hope you will join me in my efforts. Let’s make May, 2014 the most successful Lyme Disease Awareness Month in our country to date!

Lyme Disease Awareness Month

Lyme Disease Awareness Month

1.  Lyme Disease is “The Great Imitator,” mimicking over 300 diseases like ALS, MS, Parkinson’s, Alzheimer’s and Rheumatoid Arthritis.

2.  Lyme Disease is named after Lyme, Connecticut, the town in which it was first discovered.

3.  The first known cases of this disease occurred in 1975 amongst a group of children and adults in Lyme, CT.

4.  The first Lyme Disease sufferers displayed unusual arthritic symptoms.

5.  In 1982, Borrelia Burdorferi, the bacteria that causes Lyme Disease, was discovered.

6.  In 1982, The Arthritis Foundation developed the first brochure on Lyme Disease.

7.  Federal funding became available for Lyme Disease research, education and surveillance in 1991.  I am unable to locate figures of this initial funding, but I was able to track down some statistics for the current year.  According to PLOS, a peer-reviewed, open-access medical journal, Lyme Disease is 6 times more prevalent than AIDS in US.  For 2014, the federal government has budgeted $23.2 billion for domestics AIDS research, education and programs.  For Lyme Disease treatment, prevention and education, the government has budgeted a paltry sum of $9 million.  Yes, $9 million to an epidemic that is 6 times more common than AIDS.

8.  From 1998-2001, an attempt was made to make a Lyme Disease vaccine.

9.  Lyme Disease is the most common tick borne illness in the Northern Hemisphere.

10.  In 2013, the CDC released a statistic stating 300,000 people are diagnosed with Lyme Disease each year in the United States. That was 10 times the amount of people than the CDC had previously reported.

11.  Pets can also contract Lyme Disease.  A unique characteristic about this illness in dogs is that symptoms don’t start to appear until 2-5 months after the initial infectious bite.

12.  Lyme Disease is most often contracted in the months of May through August.

13.  Lyme Disease cases have been reported in all 50 states.

14. Lyme Disease has been reported on every continent in the world except Antarctica.

15.  25% of reported cases of Lyme Disease occur in children.

16.  Typically, Lyme Disease is transmitted through a bite of an infected dear tick.

17.  Most ticks carry multiple disease-causing pathogens called co-infections.

18.  A single tick can host up to 30 different pathogens such as Bartonella, Babesia and Mycoplasma.

19.  Ticks as small as a poppy seed can deliver a bite that goes undetected.

20.  Some mosquitos, flies, mites, fleas rabbits, rodents and birds have also been found to carry the Lyme Disease bacteria.

21.  Less than 50% of infected people exhibit the classic bullseye rash.

22.  The acute stages of the infection may present as flu-like symptoms.  However, many people will remain symptom free for a time, but can develop Lyme symptoms months, years or decades later.

23.  The spiral-shaped Lyme bacteria is hard to detect and hard to kill.

24.  Health insurance often does not cover treatment for Chronic Lyme Disease sufferers.

25.  The medical community is in opposition over diagnosis and treatment guidelines for Lyme Disease.

26.  The most common methods of testing for Lyme Disease are the ELISA and the Standard Western Blot Tests.

27.  The ELISA and the Standard Western Blot tests are often not sensitive enough to detect Lyme Disease.

28.  Improved testing does exist through labs IgeneX and Fry, but patients are often left to self navigate getting these tests done.

29. The current treatment guidelines suggest that a 2-4 week course of antibiotics should be sufficient to “cure” Lyme Disease.

30.  The current guidelines do not take into account duration of time one has had the illness, involvement of co-infections or that the Lyme bacteria can evade detection by the antibiotics and remain undetected from the immune system.

31. If you suspect you may have Lyme Disease, An LLMD, (Lyme Literate Medical Doctor) is specially trained in the diagnosis and treatment of Lyme Disease.

I wear lime green for me.

I wear lime green for me.

#lymediseaseawareness