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 buy soma us pharmacy 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. 

The Lyme Disease Challenge is HUGE

On March 5th and 6th, Tom and I took the Lyme Disease Challenge (LDC) to bring awareness to Lyme Disease and raise funds for the International Lyme and Associated Diseases Society (ILADS).

With some light-heartedness and a twist a of humor, we created two films. First, I “take a bite out of Lyme” in my film by showing my daily regimen of supplements and medications I ingest to help me get out of bed each day (well, some days at least). I have hope that I will one day be in remission from this terrible illness and I strive to keep laughing and smiling through it all.

As my husband, Tom has also been impacted by my battle with Lyme Disease. Ever the comedian, his film demonstrates that sometimes Lyme just ruins things-your day, your month, an outing with a friend or even just a simple cup of coffee.

For me, the highlight of this campaign came when the Real Housewives of Beverly Hills star and Lyme Fighter, Yolanda Foster, commented “Amazing” on my film and retweeted it. Luckily, I was already laying down when I saw the tweet or I might have fainted.

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What began as a grassroots campaign started by 5  amazing woman (Julie, Melissa, Özlem, Kim and Lisa), has gained order soma overnight cod some serious traction using social media. Celebrities that have already taken the challenge and showed us their best sour faces include:

Angeli Vanlaanen, Olympic freestyle skier

Ronde Barber, retired football cornerback for the Tampa Bay Buccaneers

Yolanda Foster, Lyme Fighter and Reality star from the Real Housewives of Beverly Hills

Elena Delle Donne, WNBA basketball star

Erin Andrews, journalist and host of Dancing With the Stars

Tom Bergeron, host of Dancing With the Stars

Tiki Barber, retired football running back for the New York Giants

Debbie Gibson, singer-songwriter, record producer and reality TV star

William Shatner, actor

Dr. Oz, health expert and talk show host

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When the Challenge aired on Dr. Oz last Thursday, we knew we were making some serious progress with this campaign!

I applaud the efforts of the LDC team and am so proud of the hard work by the entire ?Lyme community. It’s just mind-blowing what a group of people can accomplish. Although it may not always seem like it, PEOPLE ARE LISTENING and PEOPLE DO CARE.

With May being Lyme Disease Awareness month, be encouraged to keep sharing your stories, posting your videos and pics of you taking the Lyme Disease Challenge and challenging others to take it too. Let’s keep this momentum going!

We must find a cure!

#lymediseasechallenge #takeabiteoutofLyme #changemaker #hopespreader

 

 

 

 

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 buy soma medicine 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