Lyme -- Does it Affect Women More Often?

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My friend Beth sent me an interesting article from SELF magazine, June 2016. First, I'm grateful when friends send me articles, links, anything at all about Lyme disease. The books often leave me stressed and I get panic attacks (so MUCH!), but the articles and links are very helpful.


I went to SELF magazine's web page and found not just this article, but MANY articles about Lyme. If I could do a cartwheel, I would. The more magazines of this type that talk about Lyme, its causes, its difficulties, and who in the fame world has been affected, the more people start paying attention.

SELF Magazine, June 2016
www.self.com

My life has been destroyed by this disease. I've had doctors call me a liar, a drug seeker. I've had doctors throw their hands in the air in exasperation and tell me they don't know what I have but it might be rheumatoid arthritis (which runs deeply in my family); chronic fatigue syndrome (but doctor, I'm exhausted but can't sleep); the fact that I'm overweight (I cannot work out if I feel like a Mack truck hit me and I'm throwing up - the neighbors frown on that around here when I person takes a healthy walk); fibromyalgia (Doctor: "Does this hurt?" Pushes so hard on my shoulders I nearly fall over. "Um it didn't tickle, I'll say that!"); and finally, Lupus.


I was treated for Lupus for a year with methotrexate. While taking methotrexate, a doctor normally prescribes folic acid (or folate) to lessen side effects. However, make sure your doctor has checked to see if you have the MTHFR mutation, because if you do, and many do (raises hand), you must take a different format -- L-methyl folate, common name, Deplin. Also, avoid caffeine. My rheumatologist failed to tell me that and a bunch of other things, but as she flatly told me, she didn't see what SHE would call lupus or rheumatoid arthritis (didn't matter when I showed her my normal ring size, a 4.5, and my current ring size on a good day, a 7). Therefore, she said, she was treating me only according to my RA factors on my blood tests.

A piece of my jewelry made to hang from the rear view mirror.

And herein lies a huge problem.


I didn't have Lupus, and the medication was making me miserable. Lyme is the Great Imitator. And that is one reason why so many are diagnosed so late. The CDC also believe that Lyme is difficult to catch and easy to cure with a month of doxycycline. Bless those people for whom that works. But if you have been harboring these bacteria in your body for who knows how long, well, God bless you, too.


So back to this particular SELF article "Are You A Target For Lyme".  As I read through the same stories I've heard over and over about people having no idea they'd even been bit, bold type hit me.

"Women are less likely to test positive and more likely to suffer symptoms longer."

That got my attention, and I wanted to share this magazine (June 2016, SELF) so you could get a new, focused article on women and Lyme disease.

In addition to the information in the article, the piece explains how to tick-proof yourself if you go camping or for a walk in the woods, something I've been afraid to do for four years. The article also helps you identify a tick on your body. This can be a challenge, as they are often the size of a poppy seed. Some people find them between their toes if they walk barefoot through the grass (I used to do that all the time!). If you find a tick, take a photo, put it in a baggie, and take it directly to your doctor IMMEDIATELY.  SELF also passes along the helpful website TickEncounter.org/tickspotters.

My personal advice (and warning) -- get thee to a doctor immediately and be prepared to be blown off. I say that because the CDC just does not agree with so much of the research that shows Lyme can be and often is chronic. To learn more, please watch the documentary "Under Our Skin" and you'll learn how politicized this disease is. I cried when I saw how the Zika virus was the focus on TIME magazine, and while I wouldn't wish ANY disease one anyone, I felt so marginalized. When, doctors, insurance companies, Big Pharma.... when?

Thank you so much, SELF magazine, for publishing articles such as this. It allows women from all walks of life to find information that seems to be so hidden in other publications. 

Bite Me by Ally Hilfiger

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I just started reading "Bite Me" by Ally Hilfiger.


I'm only two chapters in and I'm in tears.


This. This is how it feels.


“Lyme is also destroying families, and the really sad thing is, a serious illness is when people need their families the most.”

—JORDON FISHER SMITH, NARRATOR AND SUBJECT OF THE AWARD-WINNING LYME DISEASE DOCUMENTARY UNDER OUR SKIN


It's happening here, whether I want to believe it or not. At some point my child sadly says he can't remember a time when I wasn't sick. My incredibly hard-working husband tracks my medications, makes sure I take them (even at 4 AM), does laundry, cooks, tries to keep the house just this side of a mess. That really leaves no time to just be my friend and husband.


I can't remember things. Names of things right in front of me. Conversations. And horrifically, my son's birthday when I tried to fill out his forms for summer camp.


That's terrifying for a woman whose big desire in life is to write about my travels, my dreams, my downfalls, and how I ultimately conquered them.


Now the book will have a different ending.


I'm so tired that just writing these few posts takes hours. I hope to start telling my stories to my web cam. Maybe one day I can pull it all together.


I just don't know.

Petition for Lyme Disease Vaccine

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The CDC does not have clean hands when it comes to Lyme disease. Refusing to recognize the full impact this debilitating disease causes people, withholding information in order to fit their agenda, and effectively denying thousands of patients the ability to find treatment should be a crime.

Please read this petition . Adding voices will hopefully allow us to be heard.

Source

Lonely

Staying at home all day really isn't as fun as it sounds, and even when I can be up and about, like yesterday, it certainly isn't Ferris Bueller's Day Off. Especially the past 29 days getting over bacterial bronchitis. That meant no Lyme treatment.

It was awful. But I'm through with that now, back on treatment.

One thing never changed, though.

I'm lonely.

People say I shouldn't be because of Facebook. That can only help but so much. If I'm home I'm usually so tired I can't keep up with Facebook friends, and in this small town I have three friends (one whom I saw for a little yesterday, which was great.) I rest during the day so I can eat dinner at the table, play cards with Zack, help with homework, see my husband. The entire time I'm exhausted. I try to look forward to the few days in a row when I feel normal. I just never know when they'll occur.

I can't explain it properly right now, but this is kind of WHY it's hard to talk about.

I wonder if anyone feels that way, too. It's not a strength thing, or a lack of confidence thing. It's being alone and too tired to do much of anything for any length of time. I try, Lord knows. I do.

But, well. This is a part of life for now. Patience has never been my virtue.

Wheelchair

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Sunday was mostly normal.

I dyed my friend's hair pink and purple.

We all had dinner, laughed until six.

Rick and I went to bed at 8pm.

I woke up soon thereafter coughing so hard I couldn't breathe. Over and over and over. I felt like I needed oxygen and I was starting to have a panic attack.

Rick ran out that Sunday night to a 24-hour drug store to find anything to help. He came home to my crying incoherent gibberish.


Every joint and muscle hurt, undoubtedly from doing what to others would be normal...standing, bending, moving all day. But spend the majority of three years lying in bed, taking this medication and that medication and you lose muscle tone and strength. Some people, like me, lose their appetite. Some people, not like me, lose a ton of weight. I've lost. Gained. Lost. Gained more.


Humiliation is a side effect of long-term illness no one talks about much. Being fine one hour and wanting to die the next -- no one has time for that. I know. I've lost friends who just "couldn't deal" with the crazy fun house of mirrors and yo-yos that is Lyme Disease.


The disease so many doctors and nearly ALL insurance companies says does not exist, even when given concrete medical proof from advanced medical tests. Yeah, that one. The disease that turns a common cold into "do we need to go to the hospital or not."


Things were worse throughout the night and Rick stayed home late enough to get Zack to school. That alone told me he was scared, because he gets up at 3am. At 3am I was screaming in pain. I'm pretty sure that freaked my stoic husband out.


When he came home, he said my two-doctor GP office couldn't see me for at least two days. Rick decided to take me to an Urgent Care facility instead of the ER. The ER would have cost a cheap copay. It's also a lousy hospital, with one doctor on call in the ER. Rick called our insurance about Urgent Care. I needed a referral, which would take a few days. Unless I wanted to drive 45 minutes to the first "approved" one.


You see a pattern here? My insurance company does not believe I am sick with Lyme, regardless of proof by top doctors in the country, if not the world, yet can't say what I have. My insurance company prefers I sit seven hours in the ER (the last amount of time I spent waiting when I went) when I waited only ten minutes at Urgent Care three miles away and chose to pay out of pocket rather than wait days for a referral.


I barely remember the visit. I was weak, half asleep yet in deep pain, but I do
remember a nurse asking kindly,


"Does she need a wheelchair?"


In my mind, I rebelled. I've had to use a wheelchair once, but I didn't want to do it again. I don't like staggering, being unable to drive at times, but I'm afraid if I got in a wheelchair...


I'd never get out.


Zack's 13th birthday is the 10th. I had big plans for his Friday school snack and his Saturday party. Zack has no idea the extra things I wanted to surprise his party with. But I do.  I have one child, one 13th birthday.


I am absolutely going to do this. A friend has picked up Zack for school all week thus far. I get about an hour or two after sleeping like the dead to get things done. Maybe a wheelchair would be good, keep me from falling. I don't know. I've fought it. I was getting better. I AM getting better. But I push too hard, and maybe, just maybe, a wheelchair would keep me from hurting myself so much and setting my progress back.

Do they come in pink?

Why Can't I Get Better? Lyme, the Great Imitator

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I have the doctor's book and have heard him talk before. Even if you don't have (or don't think you have) a tick born illness (Borrelia, Babesia, Bartonella, etc ... I have them all) it's an incredibly important video to watch. It's not long, and it can really change your life.. either for yourself or your understanding of loved ones.

We don't want to be sick.

We don't want to be a burden.

We want to get better.

Losing Sight

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Losing sight.


That has taken on two meanings for me -- the figuratiove...

losing sight of my dreams..

losing sight of recovery..

losing sight of myself.

Then there's the literal meaning...

blurred vision..

color blindness..

wordsallajumbleonthepage.

Even though I am definitely getting better,
I still battle with some scary things.

My right eye has a black spot in it, making it difficult to see.

My hands shake and are weak. 

I tried to make a wire loop for jewelry 

and failed miserable.

I still have the mind and memory 

(or lack thereof)

of early stages of Alzheimer's.

I can stare at a book and not know the name "book".

I've woken up and not know who I was

where I was

when I was.

All that being said, my pain is gone

Other than my back and feet, 

Which are learning how to stand upright

After nearly two years in bed.

My connection with the world 

      was via a Kindle.

Even though I have a huge pile of things to do...

Even though I will be reinventing myself 

in the jewelry world...

Even though I may lose some things,

I've gained a huge amount of perspective.

This happened to me.

Not my son

and not my husband.

It would kill me if they got sick. 

So I've got this. 

I can handle it.

I will survive this.