When People Put You Down For Not “Looking Sick”…. :P

So how do you explain Lyme disease to someone who thinks you “look fine”?

“Imagine the worst flu you ever had. Then, imagine not sleeping for 3 days straight. Then imagine how it feels when you have something on the tip of your tongue, but you can’t remember it for the life of you.….”

http://www.livinglyme.com/Explain-Lyme-Disease.html

So what does “sick” look like anyway? Hair falling out? Swooning on the sofa? Grey clammy skin? Unable to stand up? Most chronically ill people (including a lot of cancer patients, those with heart disease, etc and other “respected” diseases can look perfectly fine). There are those of us Lymies who do suffer from the above mentioned symptoms…these, and far worse. However for the functioning or semi-functioning Lymie not looking like you are suffering while you are suffering on the inside can be a challenge. To everyone around you you might sound like a broken record and people can get weary of the “unending troubles”.

To those of you who know Lyme sufferers; trust us folks we are weary too! We grow tired of how we must sound to you every time you ask us how we are doing. We hate that question because the answer usually involves the high points and low points of our day (which can change radically), one symptom being better while another one is worse… We know how we sound, we are much more tired of talking about our suffering than you are of hearing about it.

Also know that you are statistically more  likely see us when we are at our best, and those times when we “disappear” off the face of the earth for days, weeks or months at a time are the times when we more than likely are in fact swooned on the couch (tv remote in hand).

Please understand how lonely and isolating this life is for us. ( https://jeanvieve7.wordpress.com/2013/07/15/the-emotions-of-an-invisible-illness/ ) The toll it takes on us not just physically but mentally and emotionally. Some of us feel that we have even lost our humanity and who we are as people, and we want nothing more than to get back to real life.

( http://lymelightfight.wordpress.com/2013/06/25/what-i-wish-healthy-people-knew/  )

Trust us, this isn’t fun and we don’t want to be coddled or get undue attention, only understanding and (hope of all hopes) a cure.

Thanks for listening.

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I Have Never Promoted A Product Before, But………..

This is my first time recommending and promoting any products, but I found this little local company in Washington (yes they ship!) that makes incredible all natural body and hair care products.

I found their stand at a farmer’s market on a day trip to Whidbey Island in the summer. What attracted me most is that their products are all natural and chemical-free. As we know having an autoimmune disease  what we put on our body needs to be natural and that chemicals can have devastating effects. These products are some of the best I have smelled and they contain essential oils.

I purchased a few products but what I love most is the shampoos and conditioners. I am delighted that besides the benefit of smelling nice and being all natural they also make my hair so much healthier, stronger and smoother! I have actually had a few comments on my hair asking what I was doing differently or whether I had colored it (because it looks brighter and healthier). The all natural products work better than anything on the mainstream market including the expensive (and toxic!) salon brands. They also make all natural chemical-free deodorants, body lotions and more. They have a fabulous website and list all their ingredients so we know what we’re getting.

http://www.sweetsistersbodycare.com/index.html

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Ashwagandha and the usage with Chronic Lyme

I have been reading a lot lately on adrenal troubles and high cortisol as being a (possible) contributor to my fatigue and chronic water retention. I am sharing a good article on the use of Ashwagandha and it’s helpfulness with adrenal function and chronic Lyme:

http://www.treatlyme.net/treat-lyme-book/ashwagandha.html

Also here is a good article on cortisol

http://www.lef.org/magazine/2011/9/Reducing-the-Risks-of-High-Cortisol/Page-01

So I am going to start trying Ashwagandha per Dr Ross’s recommendations as well as weaning myself off of coffee (!). We shall see how that goes.

Lymies Cannot Live By Antibiotics Alone

Do you ever get frustrated when people think that you should be cured of Lyme with just a few weeks of antibiotics? Here is a great Picture Post to share. Oh, and link to an interesting website as well

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http://www.lymediseaseneogen.com/lyme-disease-elimination-program/

A Day Of Fatigue

You all (Lymies) know how it feels….your body is heavy……it feels like there is lead in your veins……like the earth’s gravity field is pulling twice as strongly on you than the rest of the planet’s population. This might be your reality every day, or like me these days are blessedly getting fewer and fewer. Whether you are the former or the latter Lyme fatigue knocks you down and takes you out. Sometimes it can take hours to get out of bed, going to the bathroom is a great inconvenience, and your brain is telling your limbs to move but they don’t always obey.

What is hardest is when the people in your life can’t understand; why you “look okay”, or why you were fine yesterday but crash today. It breaks my heart when I hear a fellow sufferer say they have been called lazy, or have Munchhausen’s (want attention), or they “don’t want to get better”. I know people mean well most of the time, but this is devastating and cruel to someone who is suffering from Lyme because it is not their fault. My mother who is a cancer survivor equates the worst days of Lyme fatigue as being very similar to going through Chemo therapy, it can knock you down that hard. Don’t forget your body is FIGHTING a bacteria that has invaded every system in your body! I have personally had to forgive myself because I thought for a long time I was being lazy because I didn’t even have the will to do things, turns out it was the disease. Because as I am finally turning a corner almost one year into treatment I am NOT lazy, because I don’t even mind doing housework, when I feel well enough to do it.

If you know a Lyme sufferer be kind. They are going through more than you may be able to understand. Know that their systems are invaded by a hostel bacteria, and these little corkscrew shaped bugs have burrowed deeply into their muscles, their brains, their joints, their blood……You would be tired too.

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http://decimawho.wordpress.com/2013/06/05/the-hardest-thing/

DELICIOUS Paleo/Candida Diet/Leaky Gut Diet/No-Sugar…Etc Smoothie

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So I guess I would call this an Almond Green Smoothie. Safe for Lymies, Leaky Gut Diet, Anti-Candida Diet, Dairy-Free, Sugar-Free, Soy-Free, Fruit-Free, Gluten-Free, Starch-Free.

And yes, it still tastes good 🙂

2 Cups Unsweetened Almond Milk (I used Almond Breeze brand, use refrigerated if you can rather than shelf stable, in that it has fewer additives. Of course homemade is always best)

2 1/2 Cups cut up Frozen Zucchini (this is something I keep in my freezer all year long. it is an AMAZING way to thicken smoothies without changing or adding to your flavors, and of course better for you then adding thickeners, and better than ice because it doesn’t water it down).

1 Tablespoon of your favorite Green Super Food Powder (raw is best, Food Matters just released their own)

2 Tablespoons Almond Butter (I used some that I ground myself at the store, unsalted)

1 Teaspoon Almond Flavoring (burn off the alcohol first)

1/2 Teaspoon Cinnamon

2 Full droppers of Liquid Vanilla Flavored Stevia (or to taste) (vegetable glycerine based)

1 Tablespoon Maca Powder (any natural grocer should have this or some vitamin stores, it has a malty taste)

Throw it all in the blender!

Neurological Lyme: So You’ve Known Me Your Whole Life And Can’t Recall My Name? Also the Lyme-ALS & MS Connection

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Lyme Brain. If you are a Lyme sufferer whether it be chronic, acute or mild, you probably know what this is. It usually involves minor memory lapses, trouble reading and focusing, compromised word recollection, and dyslexia. These symptoms can also be very severe, thankfully I am in the category of the former, and getting much better.

Since the Lyme Spirochete and secondary infections like Bartonella can literally effect anything and everything in your entire body, it makes sense that it can wreak havoc on your brain. I think this aspect of the illness is harder for people to understand; You just end up feeling dumb when you can’t spell words you have known for years, or struggle with simple math problems, and since those around you can’t “see” the disease effecting your mind, it may be hard for the friends, family, and coworkers of Lyme sufferers to understand what is going on with you. Especially if you have yet to be diagnosed.

SO many now diagnosed Lyme sufferers have been told by doctors when complaining about their various symptoms “it is all in your head”, well thank you doctor, in your ignorance you are not completely wrong. How many of you have had doctors suggest anti-depressants or anti-anxiety meds before your diagnosis? It is sad.

Dr Martin Ross MD: “Cognitive dysfunction is a very common problem that often resolves once the Lyme germ and co-infections are under control. Cognitive impairments occur with memory and information processing.” “Cognitive symptoms of Lyme include: Confusion/difficulty thinking; Difficulty with concentration, reading, problem absorbing and new information; Word search /name block; Forgetfulness, poor short term memory, poor attention; Disorientation, getting lost, going to wrong places; Speech errors: wrong word, misspeaking; Mood swings, irritability, depression; Anxiety, panic attacks.”

So you are not crazy, you are not alone, and there is hope!

Here are some helpful links for general information and living with Lyme:

http://www.thehealingartspartnership.net/lyme-disease_symptoms.htm

http://articles.mercola.com/sites/articles/archive/2012/02/05/dr-dietrich-klinghardt-on-lyme-disease.aspx?e_cid=20120205_SNL_Art_1

http://paleodietlifestyle.com/dealing-with-autoimmune-diseases-and-digestive-problems/

http://lymebook.com/blog/the-recovery-process/herx-reactions/herx-reaction-fundamentals/

http://www.tiredoflyme.com/so-you-have-chronic-lyme-disease-a-guide-to-preparing-for-treatment.html#.UdosW23eaSq

 

There are also links in some cases of ALS & MS in cases of those patients testing positive for Lyme. Here are some links for the ALS/MS Lyme connection: http://www.psychologytoday.com/blog/emerging-diseases/200812/shadowland-the-mind-neurological-lyme-disease-part-one

http://underourskin.com/

http://lymediseaseguide.org/lyme-disease-and-ms