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!

The Things We Do…

The Things We Do pic As a Lymie, I have gone to extraordinary lengths for my health. After over 16 years of ill health, I have to be extremely careful with my body.

Example: my hair used to be blonde. Naturally. That was 20-plus years ago however, and when I “grew up” my hair rebelled and turned brown. A color that I considered boring. So, at age 18, I began dying it blonde again.

It stayed blonde (thanks to chemicals) for many years until recently, when finances dictated that blonde hair wasn’t a true necessity. At the time of this decision I couldn’t even remember what my natural hair color looked like. I bought a box of hair dye from the store and began searching for something resembling the color that God originally intended.

In case you haven’t noticed from my pictures, I’m a girly-girl. I always have my toenails painted, my hair curled and if my energy allows, I wear makeup, a cute outfit and heels. So the idea that I don’t NEED to dye my hair is, frankly, abhorrent to my thought process.

Unfortunately, hair dye is loaded with chemicals. The amount of toxins you put into your body by dying your hair is concerning. After realizing this, I began my quest for all-natural ways of dying my hair.

Keep in mind, I’m working on the correct shade of brown.  Others have tried natural dyes for red or blonde, but I haven’t attempted those at this time.

What I HAVE tried are the following: henna, black walnut powder, coffee and cocoa powder.

Before you raise your eyebrows in surprise, I have it on good authority that all of these methods have worked for others (the internet never lies).

Although my hair color is OK, it is not what I truly want. However, it smells continually like chocolate (thanks to the cocoa powder), so that’s something.

I will go to great lengths for my health. That is obvious. In this case however, I may choose to responsibly load my body with chemicals and toxins and get the hair color I want. We only live once, after all; we might as well have the hair we desire.

Dream Playlist for Spoonies

  I love music.

As a former pianist, I grew up with the classics (as in Beethoven, Bach, Mozart, etc). In my teens I dived into the world of rock n’ roll, listening to the Beatles, Aerosmith, Jimi Hendrix and ACDC. Then came pop music: Britney, Christina, even some Justin Beiber.

Music is therapeutic and as long as it isn’t country songs (don’t get me started), I’m up for some free therapy!

Keeping that in mind, I have selected some contemporary songs for those moments that we, as spoonies, all face.

 

  • When I’m having a rough day:

  • When people push my limits:

  • When my spoonie friends are going through hard times:

  • When friends think I’m crazy for putting myself and my health first:

  • When I remember the good things in life:

A Day In My Life

A Day in My Life picSome people have this idea that I sit around all day.

Nothing could be farther from the truth.

I may not rush around like the typical young adult, flitting from high-pressure jobs to parties to adventuresome travels. However, I work exceptionally hard and am more responsible about my health than many others my age.

Let’s look at a day in my life.

After getting up in the morning, I make sure to drink filtered water with fresh lemon juice added. Personally, I’m not a huge fan of water but it is absolutely essential to good health and the lemon juice makes it much more palatable. Some add Lemon essential oil instead of fresh lemon juice.

Next, my first round of pills. My medication/supplement/herbal/homeopathic bottles take up four shelves on a bookshelf but I have them arranged so that it is easy to remember which pills are AM and which are PM. Even so, making sure I have taken all the correct pills takes a little while.

Before eating, I have begun drinking Apple Cider Vinegar. This recipe is full of antioxidants and helps to keep blood sugar levels even while aiding in digestion.

Breakfast often consists of scrambled eggs with freshly cut onions and an additional vegetable (kale, anyone?) If scrambled eggs take too much energy I have found some excellent recipes for vegetable shakes. Not only are they an excellent way to get veggies down, they often have extra yummy ingredients such as pumpkin, chia seeds or lemon juice.

Later in the day, I try to fit in some exercise along with time in my infrared sauna. Currently my exercise is limited because of my chronic illness but most days, a 30 minute walk is doable. If I can walk longer or add in some additional exercises, it’s a good day.  After staying in the sauna for at least 20 minutes, I take a cold shower to wash away all the toxins.

 Because of the immense amount of chemicals added to shampoo, conditioner and body wash, I make my own and always use those in the shower.

Time to rest! When lying on the couch I love to do a castor oil pack. They have many uses and I have found them helpful with liver problems, digestion issues and inflammation. Keeping the pack on for an hour or two is best. Drinking plenty of lemon water during this time is essential, considering what I’ve just put my body through with the exercise and sauna.

Throughout the day I also enjoy drinking lots of green tea. Green tea is full of beneficial qualities and can help stimulate both weight loss and brain function.

Before chowing down on dinner, I drink more of my Apple Cider Vinegar concoction. Fresh salad is a favorite of mine for supper, although I fully admit that for years I hated the taste of fresh vegetables. Adding olives and a homemade dressing makes my salad exceptionally good. Since I stick to a Paleo diet, carbs are my enemy, but making some kind of meat (organic if possible) is necessary for getting the proper amount of protein in my diet.

Dessert is never a bad idea in my opinion, as long as it’s healthy. Just yesterday I made my own nut butter (AMAZING) and my take on Flaxseed cookies. Both require a little bit of work and energy but are grain-free, sugar free and full of omega-3’s.

Next comes the evening round of pills – yay!

Getting a good night’s sleep is a constant battle for me. While I do have prescription medications that help me sleep, I believe it is important to do what I can to help myself using natural alternatives. Magnesium and chamomile are always taken in the evening, and often I make myself a cup of tea (tangerine, de-caf green tea or chamomile tea are excellent for the evenings).

Essential oils have many uses and when trying to relax in the evening, I often put some Lavender in my diffuser and turn that on at night. If I’m struggling with anxiety, I put some Lemon or Lavender essential oil directly on my skin.  Headaches are a part of daily life, and using Peppermint oil often helps diminish the pain.

Meditation, yoga stretches or deep breathing exercises can also be helpful when struggling to get to sleep.

Of course, in between all of this I work, take care of my dog and help around the house, while keeping up with basic chores such as additional cooking and cleaning.  I also spend several hours per day on my blog, as well as researching healthy living ideas and inspirations for an ever-increasing healthy lifestyle.

Still think I sit around all day?

Lymies and Netflix

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For the majority of my struggle with Lyme disease, Netflix was not available.

I still wonder how I survived those days, to be honest.  The local Blockbuster certainly made a killing off of this customer.  I had my own VHS/DVD collection but there are only so many times you can re-watch films.

Then Netflix entered my life.  It’s a Lymie’s best friend at only $10/month for streaming video.

Fatigue, depression, sleeplessness and high levels of pain are constant companies of any Lymie (or anyone with a chronic illness).  Although we fight our disease with medications and intense protocols, it is essential and necessary to rest as much as possible.

No, we are not “lying around.” We are fighting, albeit in a horizontal position. But we are working harder than YOU will ever understand.

Enter Netflix – they have dramas, comedies, period films, independent films, documentaries.  Whatever mood strikes us and whenever that mood strikes us, Netflix is ready.

Actually, I think I will turn on some Netflix now…I have vegetables simmering in the crock-pot upstairs, essential oils diffusing next to me and a glass of green tea ready to drink. Since I still need to decide what to do with the thawed meat I have in the fridge, perhaps I’ll turn on a Food Network show and see what ideas they can give me!