Last Day in May

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Today ends my month of daily blogging in recognition of Lyme Disease Awareness month.

Don’t worry, I’ll still blog – just not every day!

To end this month, I would like to make a wish.

My wish is that, by May of 2017, doctors are telling patients that a negative test result for Lyme is not reliable.

It seems so simple, but it would mean a world of difference for so many.

If I dare to dream, a reliable test will be available to patients by next year but that would be a bit of a miracle (even though, again, it seems so simple).

Fingers crossed that my wishes come true. Next year, I will review this post and update you of the changes that have/have not taken place.

Keep fighting, fellow warriors!

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Lyme Disease Facts, in pictures

Here are a few facts about Lyme Disease. Feel free to share these with family and friends – they are more likely to glance at pictures then read a lot of information (I know from experience).

Lyme disease awareness month is almost over, but the fight continues for accurate testing, proper diagnosis, knowledgeable doctors and insurance coverage!

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You read it: NO RELIABLE TESTING, yet there are over 800 cases per day!

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My treatment has taken over 16 years and the Lyme is still not in full remission (that’s just sad).

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True. I don’t.

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It is called, “The Great Imitator” for a reason.

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Lyme does not discriminate. Neither do co-infections.

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These are just A FEW of the symptoms of Lyme disease.

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Hello yoga pants!

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My First Day

Yesterday was my first day back at work after two years of being too sick to keep up a job.

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It was an excellent day, all-in-all. I was expecting to just fill out initial paperwork but my boss actually clocked me in for a shift. We ended up spending the majority of our time outdoors (in 85 degree heat, no less) which was a very unusual situation and most likely will not occur again. However, I not only learned the basics of my new job, I also started my summer tan.

Watch out ya’ll 🙂

As previously stated this is a part-time job (see my posts “Starting to Move On,” “Hired!” and “Working”). My next day isn’t until next week.

This suits me just fine considering this weekend is Memorial Day weekend and I am planning to attempt crab cakes for my family. A lot of energy will be expelled on those since it is my first time making crab anything.

My boss seems to be a genuinely decent person (haven’t had many of those) and the other employees that I met were very friendly and encouraging.

It didn’t hurt that I baked delicious Cinnamon Muffins for everyone and made sure they were passed around.

Today, I’m a bit warm and tired. Tanning for several hours in the sweltering heat while trying to learn new job skills will do that to a person. However, I knew today would be a slow day and I was fully prepared to rest on the couch with the air conditioning/fan on. My fur-baby Bella missed me yesterday and is sticking close to my side.

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For the rest of the afternoon/evening, my tasks are to prepare dinner (fresh salad, Shepherds Pie and perhaps Flaxseed cookies) as well as do some laundry, cleaning and sauna time (bring on the heat, again!)

Thank you so much, faithful readers, for following me on this journey towards a better life and better health!

Weight and Lyme Disease, Pt 2

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Since posting my struggle with weight yesterday (Weight and Lyme disease), I have received an immense amount of support from readers who, unfortunately, struggle with the same issues.

As women, we often feel the need to bend to society’s standards of “beauty,” standards that are truly impossible to maintain. In fact, celebrities who often tout their “weight loss” programs are photo shopped on a regular basis. Standards for beauty are not the same as standards for health, but culture rarely makes that difference.

Being healthy is much more important than being skinny.  In fact, I believe that healthy is the new skinny (although America’s Hollywood disagrees with me, but then again, eating disorders are rampant among their female stars).

When I gained a significant amount of weight, I felt the judgment from certain friends and acquaintances.  However, I have come to realize the selfishness of those individuals; they rarely asked about my life and my health.  Since coming to this realization, I have felt freedom from their judgment, knowing that they do not possess the character qualities that I do (such as sensitivity and a caring heart). For those of you who are struggling with weight, please know that the people who judge you for weight gain are often very miserable, selfish people, who will drain your energy without a second thought.

  This doesn’t mean they are “bad people,” it simply means that you need to be aware of their maturity level and not pay much heed to their actions.

Now, to the encouraging section!

I have included some wonderful quotes about inner beauty in the section below.  Several of these quotes are posted around my house (for example, the bathroom mirror) so that I am guaranteed to see them on a daily basis. They remind me of the truth!

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Weight and Lymies

Before going into my struggle with weight, I would like to say this: a number on a scale does not a person make.
  Inner beauty is the kind of beauty that lasts a lifetime and is not diminished by wrinkles or age. It is more important to measure yourself in strength than in pounds. Loving yourself, no matter what your size, makes you a truly beautiful and confident person.
  These are facts I try to keep in mind during this fight.  However, my struggle with weight is also about my struggle with better health.  Because of this, I have decided to share my fight with you and ask for any advice you may have.

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**The following story may cause triggers for those with eating disorders

Since getting Lyme disease in 2000, I have had significant struggles with my weight.

And before you ask, it isn’t because of eating habits. I have been on various diets since the age of 16, three years after becoming ill.

The first time I put on weight, I was on a juice diet.  My meals literally consisted of nothing but juiced vegetables and almonds when necessary (to maintain blood sugar levels). Many people report significant weight loss while juicing but not me; my body put on thirty pounds.

Even worse, I couldn’t seem to lose the weight despite my best efforts.

It was because of those extra thirty pounds that I became addicted to an eating disorder in my early 20’s.  The eating disorder was started as a desperate attempt to shed those extra pounds, but unfortunately, after losing 50 pounds in 6 months, I discovered I was addicted to the disorder and couldn’t stop.  It took several years to recover.

Two years ago I was on IV antibiotics and because my system was completely overloaded with bacteria, Candida and liver issues, my body put on nearly 100 pounds.

Read that again.

That’s correct, nearly 100 pounds. And no, I wasn’t eating a bunch of crap; I was sticking to a gluten-free diet and rarely eating more than one meal per day.

My LLMD put me on a whole new lifestyle called the Paleo diet.  This however, is not a diet to me; it is truly a lifestyle choice that I will most likely stick to for the remainder of my days.  Thanks to going grain-free, sugar-free and dairy-free, my body has shed nearly 80 pounds.

Unfortunately, I cannot shed those last few pounds despite increasing activities such as exercise and time in the infrared sauna.  The extra weight feels like a punishment in some way and I know that strangers blame ME for not being “the correct weight.” Even one of my doctors has commented that I need to change my eating habits and “lose some weight!”

My life isn’t perfect but I truly want to get back to a healthy weight.  Not just because I am vain, although I openly admit to enjoying a good image.  My liver is under some strain and losing the extra weight would be wonderful for my health.

The type of weight I’m dealing with is Visceral fat (fat around the stomach area).  According to Dr. Josh Axe (a personal hero of mine), this type of fat is very dangerous because it is stored around a number of important internal organs such as the liver and pancreas. My chances of getting diabetes are escalated because it interferes with hormone regulation.  Visceral fat can cause mood changes, sleeping issues and lack of energy.

Most Lymies, from what I’ve seen, experience the opposite of this; because of nausea and stomach issues, they are often under-weight instead of over-weight. However, for those of my readers who are chronically ill and going through similar issues, do you have any tips or insights for me on how you maintain a healthy weight?

While continuing to stick to a grain-free, dairy-free and sugar-free diet, I drink close to 100 ounces of lemon water per day.  Exercise and saunas are done as often as possible. However, I refuse to restrict food again (I did that enough with the eating disorder and do NOT want to go back to those habits).

The fight against dangerous fat is underway!

Hired!

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Readers,

  This past week I told you I sent out my resume after two years out of the workforce.

  On Friday, I was offered a job.

  On Saturday, I accepted!

  It’s part-time so I can ease my body back into the “daily grind” of working without (hopefully) overwhelming myself.

  Also, it is a quiet environment and I will mostly be surrounded by books…amazing!!

  Please continue to read as I share my journey towards a new life with you. I’m so grateful for all my readers and excited to have you with me as I fight my way through chronic illness.

Mayday 2016, Pt 2

Readers, you may have noticed that this past Thursday I failed to write a post on my blog.

That is because I was downtown D.C. for Mayday 2016!

 

While downtown, I attended the Science Forum, hosted by Lyme Action Network and Patient Centered Care Advocacy Group.lyme action network pic

This Forum explored the scientific, economic and policy related challenges posed by the rapidly growing epidemic of Lyme disease.  

Speakers included:

  • Allie Cashel (author of Suffering the Silence: Chronic Lyme Disease in an Age of Denial) allie cashel, suffering the silence
  • Ronald Stram, MD (Stram Center for Integrative Medicine)
  • Jenna Luche-Thayer, Advisor on Government Accountability
  • Holly Ahern, Associate Professor of Microbiology (speaking on Microbiological Challenges of Tick-borne Infections)
  • Tammy Crawford from Focus on Lyme (speaking on next generation tests for tick-borne diseases)
  • Lance Liotta, MD PhD (Medical Director Clinical Proteomics Lab at  George Mason University), also speaking on next generation tests for tick-borne diseases

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The talks were all excellent and especially exciting are the new tests in development for accurately diagnosing Lyme disease. Unfortunately, it was not well-attended by either government representatives or the media. However, a live stream is available for those who are interested:

https://livestream.com/accounts/19315612/LymeForum

A huge thank you to those who hosted this Forum; talks such as the ones presented here are invaluable and greatly appreciated by those of us who continue to suffer from this horrible disease!

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Mayday 2016

For the first time, I was able to go to the Mayday event held in Washington, D.C. yesterday!

The Mayday project has been going on for several years now and rallies Lyme patients together in order to protest the IDSA.

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According to themaydayproject.org:

The Mayday Project was formed by a group of volunteers who have been touched by Lyme disease. Mayday advocates for accurate tests, better guidelines, improved access to treatment, more education for physicians, and increased funding for research.

My mom, my best friend and I traveled to D.C. yesterday to attend the Science Forum (more on that in another post). In the evening, the Mayday project held a vigil for all the lives that have been lost to Lyme disease.

Here are a few pictures…

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Starting to Move On

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This past week, I sent out my resume.

It’s been two years since I had to quit working because my health was so poor, but I’m ready to get back out there. My goal is to start part-time so I don’t push myself too hard.

These past two years have been horrendous but I know they happened for a reason. Once I’m able to afford it, I want to go back to school and begin working in the area of nutrition and health.

I believe my experience can be used to help others who are struggling with their health.

One step at a time…sending out my resume is the beginning, but even though I have a ways to go, I want my readers to be on the journey with me!