Bloody Lymey

A Blog About Living with Lyme Disease

“Lyme Less Live More”

I see an interesting website with what appear to be something like webinars about how to make the most of your life with Lyme.

http://lymelesslivemore.com/

Looks like good stuff.

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Lyme Alliance of the Berkshires to Screen Under Our Skin I&II

I received this announcement via email today and it looks like a good one:

“The Lyme Alliance of the Berkshires will be screening the award-winning Lyme disease documentary Under Skin on Tuesday February 16th, 2016 at 6 pm. We will be screening its sequel Under Our Skin 2: Emergence on Thursday February 25th, 2016 at 6 pm. Both dates will take place in the Pittsfield Library auditorium (from main entrance walk to elevator, choose ground floor) located at 1 Wendell Ave in Pittsfield, MA 01201. Each screening will be followed by a Q & A session. Attendees are welcome to arrive as early as 5:45 pm. Refreshments will be provided.”

lymefilm

If you haven’t seen the movie yet, here’s the link to the film’s website for info:

http://www.underourskin.com/film/

Best wishes, my friends.

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My Lyme Data: Helping Find a Cure

Did you know that Lymedisease.org is beginning a database for us to enter information about our experiences with Lyme Disease?

Their FAQ Site:  https://www.lymedisease.org/how-will-mylymedata-be-used/

Perhaps the most salient points in the FAQ page read as :

“Your data, without your name or other identifiers, will be combined with the data of other patients and analyzed to help begin to answer important questions about the course of illness and factors that affect whether patients remain ill or become well.

“The LymeDisease.org study team will analyze this data on its own and in partnership with researchers and clinicians who are interested in patient-centered research. Independent researchers working on patient-centered research projects approved by LymeDisease.org. may also analyze de-identified patient data.”

I entered mine.  The questions are mainly regarding symptoms, what the course of being diagnosed looked like/how long it took, what we were misdiagnosed with, how much Lyme is interfering with life today post treatment, how effective treatment was, current treatment, etc.

People prefer not to participate in surveys such as this for a multitude of reasons and I respect those.  I’m not saying people should or should not. I simply wanted to let people know that this is being done and maybe our experience could benefit others.

If you choose to participate, you may find the survey through the FAQ link above.  It’s good to read up on it before deciding.  Also, it appears that they will keep in touch with us and track us for some time after.

Take care, friends.

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When People Doubt Us

I belong to many Lyme Groups on Facebook – and perhaps you do, too.   Tonight in my newsfeed was a heartbreaking plea for prayers and positivity from a fellow Lyme sufferer who must live with her parents, can hardly work and stay afloat and endures an onslaught of negativity on a daily basis – everything from their calling her a welfare queen to throwing in her face that she lives there virtually rent free.  She acknowledged that they are sick people who came from poor parenting themselves and perhaps are doing the best they can.  I think there is a lot to learn from this beautiful lady , and how compassion and understanding for THEM helps HER.

I have been fortunate. No one really doubted me.  I don’t know why.  I surmised that maybe it was because I was an energetic person, always on the go, climbing mountains on hikes, going for walks and playing with my son.  There was a joie de vivre about me that got snuffed by Lyme quite quickly and people noticed that.  Had I been a rather mellow person to start with or someone who enjoyed watching movies and being home, I might not have had people take notice so much.  But I don’t think that’s it. I think it’s luck and little more.

There have been misguided words of wisdom and insight through the years but never from anyone who mattered very much. My favorites that people have said include “You’re just used to being sick,” and “Maybe you should get more exercise,” and the pregnant silence following “You don’t look sick.”  That silence that begs an explanation, a justification.  There is an entitlement to that silence, an entitlement that takes quite a bit of audacity.

It’s easy to get sucked into a power struggle with people, whether they are well-meaning strangers, coworkers, friends, spouses, family.  It’s easy to try to make them understand something they are incapable of understanding.  We can tell them what happened and what it’s like,  as well as present any validation the medical community has given us .  We can show them our medications.  We can tell them who we USED to be as if we can show them a “before and after” and awe them with the contrast, thereby ending the debate.   We can use up all our “spoons,” (see  more about the spoon theory if you don’t already know of it: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/)  trying to align these people with us.

I remember running late for work on a day I felt particularly wiped out and in pain.  I left my cell phone upstairs. I started to cry (I’m not a crier, by the way…..), thinking about how I would have to tap into my reserves for the entire day so early on.  Climbing the stairs was a big to-do for me. I decided I needed the phone so my son’s school could get me if there was an emergency. Of course there wouldn’t be an emergency, but there MIGHT.  Am I on a tangent?  No.  We sometimes choose to tap into our reserves to try to make people understand things they are incapable of understanding.

Before this happened to me, I did NOT understand people who were sick or had chronic pain or disabilities or people who had the limitations of old age.  I just did not.  It pains me to think of how I thought of people and how I must have come off at times even if I did not outright say anything malicious or even buttinski-ish.  I have to remember that because the person I was is precisely the kind of people we’re dealing with , and there was nothing you could tell me that I would embrace or that would imbue me with a sudden understanding and compassion.  Thankfully I have it now.

When we don’t understand something, we reflect on what we know.  When presented with people who had limitations or illnesses or old age, I could only reflect on limitations I have had myself.  There were blessedly few.  I had pneumonia once.  I sprained an ankle once.  I had been pregnant once. When I was a teenager I had a few seizures.    Everything I had were things that would come to an end.   Certainly not enough for me to understand what it’s like.  I try to remember the fact that people are products of their own experience and sometimes they “get it” when I tell them the fatigue and weakness is like the flu – the real flu and not the “throwing around the word flu” type of flu.  They may nod slowly and knowingly, surprised to hear it is that debilitating.  But that’s all.  They can’t wrap their heads around the other nuisances such as joint pain or nerve pain (how do you even describe that?)  And I can’t make them wrap their heads around it.   Sometimes I forget that and I try.

Are there any words of wisdom to apply to self-centered family members who say unhelpful things or cast doubt on us?  Probably not.  It’s cold comfort to say “it’s them not you.”

how it feels

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Chronic Illness Bingo

Can’t we all relate to this?   Hahaha.  And my favorite:  “you’re just used to being sick.”

lyme bingo

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The War on Bugs – Article in Berkshire Eagle RE: Mosquito Control But No Tick Control

I live here in Berkshire County in Western Massachusetts.  Our local paper published this interesting article:  http://www.berkshireeagle.com/news/ci_27942768/war-bugs-massachusetts-11-million-spent-fight-mosquitoes

I never wondered about this.  Those trucks in the early morning hours, those announcements to close our windows, the protests and harrumphs about cancer and what are they spraying us with and is it worth it? It never occurred to me to wonder why the hubbub about West Nile Virus and not so much as a ‘bub about Lyme Disease and other tick-borne illnesses.

I never knew that Berkshire County has the highest rate of Anaplasmosis , another tick-borne illness.  Our county borders Columbia County, NY; they had the highest rates of Lyme in the country for 5 years straight at one point (it was percentage rate per population , not actual numbers).  I seem to suspect that deer do not stop when they see the green sign bidding a warm welcome to travelers and announcing they are entering Massachusetts.

The article talks about how much easier it is to treat for mosquitoes, how they are more predictable at certain times of day, whereas one area could be teeming with ticks and the next yard could be without them.

It’s interesting to think about.  Wouldn’t it be nice if ticks could be controlled?  But I think about bed bugs.  They were practically nonexistent here due to crop-dusting.  The chemical that did them in was banned and here we are talking about bed bugs again, and inspecting hotel mattresses and whispering about NYC movie theaters.

This conversation about spraying for ticks is probably fruitless.

Soooooooooo……………………. Always remember:

130701_preventinglyme-1200

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BLAST you, Connecticut! : Powassan / Tick-borne Virus – And What About Tea Tree Oil / Tick Repellent ?

I found this terrifying article:  http://newyork.cbslocal.com/2015/04/07/non-treatable-virus-found-in-ticks-in-southern-connecticut/  I live in Massachusetts, so I’m not terribly far from the epicenter of this revolting discovery.  What is it about Connecticut and tick-borne sicknesses?    Lyme Disease, of course, originated/was discovered  in Old Lyme, CT. This may bring up the topic of how to repel ticks. I am seeing this on Facebook: tea tree oil I don’t know if it works – I don’t see why it wouldn’t. I use tea tree oil on my fungus-ridden toenails (with good results) and the smell fills the house and repulses all who enter.  But do you have any idea how much tea tree oil costs?  And have you had a look at the size of the bottles you buy for beaucoup bucks?  Seems the going rate starts at $8.99 and averages around $10.00 , factoring in higher-end brands, for 2 oz.  So for this price, and this ratio, you should have 6 oz of bug spray for approximately $9. If it’s effective, it’s not a poor man’s repellent! Dear readers, has anyone tried it with or without success? If it was successful, was it a ROARING success where you think it’s worth it to shell out the money? I know tea tree oil is a healthier alternative to deet and the other chemicals that probably cause cancer and endocrine problems and whatnot.

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Facebook/The Lyme Disease Challenge – March 2015

Thought I’d reblog this since it’s March now! Let the Lyme Challenge begin!

Bloody Lymey

I happened upon a “take a bite out of Lyme” challenge in the works for March 2015.  Similar to the Ice Bucket Challenge, one is “challenged” to either bite a lime or pay a fine.  Similar to the Ice Bucket Challenge, too, it is geared toward raising awareness.  They take it a step further, however, tasking us with including one or two brief facts about Lyme and co-infections.  Nice, huh?

Here is what the Facebook page says:

Based upon poll results/administrator input, the “Take a Bite Out of Lyme Disease” Challenge will kick off on March 1, 2015 and will continue until it naturally ends.

Participants will be encouraged to accept the Challenge and/or donate to the designated recipient organization to be announced soon (which will act as a repository to direct funds designated recipients). To accept the challenge, participants should:

(1) Post either a short video or still photo…

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Lyme Humor / Lyme, the Great Imitator

I thought this was funny in a sad way:

 

dis dress

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Claritin & Lyme Disease?

Oh, I don’t want to turn into the Tweeter of Bloggers where I sort of copy and paste links to interesting articles.

But here we go again:  http://lymedisease.org/news/lyme_disease_views/claritin-lyme-balf.html

Has anyone heard of this? I never tried it so I cannot recommend nor not recommend it.  Might be worth reading up on.

If anyone has any experience with this, please chime in.  We would love your thoughts.

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