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.

alone-lonely-girl-beautiful-sad-waiting-seaside

2014 in review

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.

Here’s an excerpt:

A New York City subway train holds 1,200 people. This blog was viewed about 7,700 times in 2014. If it were a NYC subway train, it would take about 6 trips to carry that many people.

Click here to see the complete report.

Holidays Can Be Tough With Disease

Merry Christmas to all my fellow Lyme sufferers. And because many of us have come to just say “Lyme” as a blanket term for not only Borellia itself but also the bugs that come with it…Merry Christmas to the Bartonella victims, the Babesia hosts, the Mycoplasma patients….

Holidays can be hard for many reasons; You can’t eat the food. You feel in a fog and can’t engage with people. You are in physical pain. You are too fatigued to attend any functions. This just marks the end of another empty and wasted year eaten by illness….

I just want to send blessings and prayers to all of you. I wish I could personally encourage each of you and had the resources to meet all your needs.
What is getting me through is focusing on the reason for the season and knowing Christ came and humbled Himself taking on the limited form of man when He is an infinite unlimited God. I honestly do not think I could have made it through all these years of suffering physically, mentally and emotionally if it had not been for my relationship with Jesus. There is no other reason that I at 35, still single because of illness, and having had decades of lost years…lost experiences…and so much pain, can instead have learned to be grateful for suffering because I can now see that God has been more interested in who I am internally and the ministry He can give me because of my illness.
For that reason I feel blessed to have been chosen to be used in that way and to have grown so much wiser, kinder, informed, stronger, deeper and so much more.

Because of illness I will be an advocate of Lyme for the rest of my life and care and pray for all of you, and do as much as I can with my resources to raise awareness and help others.
Stay strong this Christmas Lymies!

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Cute Pet Fundraiser (link fixed!)

Hello all, I am in need of a little help with a contest for my newly adopted puppy. I have entered Shiloh in the “Santa’s Favorite Pet” contest. I am trying to raise funds to help pay bills. Could you please vote for her? All you have to do is create a login for Kiro TV and vote. You can vote everyday between now and the 31st. Go Shiloh!

shiloh reindeer

http://kirotv.upickem.net/engine/SubmissionWidget.aspx?PageType=VOTING&ContestID=156906&SubmissionID=73433408

How Do You Apologize For Your Brain?

lyme_brain (information from underourskin.com)

Before proper long-term Lyme treatment on the left, and after proper treatment on the right. The left image reveals an oxygen starved brain. Interestingly enough when I was diagnosed with Bartonella in my brain and brain stem in July I was told I was not getting enough oxygen to my brain.

I am going to try my best and blog tonight through the fatigue of the aftermath of a 16 hour (so far) day. The last couple months have been really rough with worse fatigue, brain fog, body pain, water retention and other stuff…

I am pretty certain I have entered the ring of fire of die-off yet again since my last two treks to Idaho October 13th and December 1st, but things have greatly intensified since the 1st. My body pain and fatigue have been intense. On my last visit the doctor identified a co-infection in my bladder and blood and treated them both. Since coming back to Washington I had been feeling so poorly that I saw my doctor here to help support this round of herx. Besides just viral die-off she thinks there is some other stuff going on and she is running some blood word to check on things that my body is making antibodies to. In my visit with her I was too overwhelmed with the amount of information that she ran past me and I really can’t repeat even a quarter of the conversation… But basically among other things my body is very high in ammonia and having immune reactions to things it shouldn’t (including animal protein!) along with fighting the Lyme and co-infections.

I am aware that I am doing a poor job of explaining things right now and that’s ok, I am trusting my care to the docs who do know what they are talking about and who are not slurring through sleep-deprived, co-infection-brained, pea soup-like neurological firings.

The main purpose of my post today was inspired by a now good friend who told me that when she first met me she thought I didn’t like her. This took me aback because my initial impression of her was rather the opposite. Hearing this deeply saddened me because I am aware of how much my illness affects my personality and more specifically my “response time” to social situations or when anyone speaks to me. First let me quickly say that for the most part this has greatly improved since this summer and I have felt more like “me”. But that said there is something about this disease that puts up a little inner wall in your brain where you feel like you are not quite connecting and the logic of proper socialization is sort of lost.

I have also found sometimes upon reflection and much to my dismay that I have said or done things over the years have been incorrectly perceived (even though it made perfect sense to me at the time) or at times I have incorrectly perceived others. This is massively frustrating on every level and I HATE feeling shut off and vacant when I’m having a bad day and/or I am overly tired.

I am over it today but I have had a few days recently where I have felt a bit dirty and subhuman for coming off wrong….cold….stoic…..grumpy…..   😦

I still know that there will be better days coming again so I am hopeful and optimistic. As for my friend who told me about her perceived initial impression? Well she has two lymies in her life so she has come to understand this disease better and loves us both in spite of ourselves 🙂

Here are some good pages on neurological Lyme (keep in mind that Bartonella and other co-infections can also pass the blood-brain barrier):

This —>   http://www.tiredoflyme.com/lyme-disease-brain-fog-what-it-is-what-causes-it-and-how-to-help-reduce-it.html#.VJJTY3s1gYo

http://www.lymediseaseaction.org.uk/about-lyme/neurology-psychiatry/

http://www.igenex.com/psychological_effects.htm

http://lymedisease.org/news/touchedbylyme/jesse-colin-young.html

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