Episode 22: Social butterfly

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Episode 21: Baby shower, or Lyme Ironman

Would love to add a few comments to this video (it WAS the longest I’ve been out with friends haha) but the nerve pain and discomfort, along with inflammation and muscle cramping, that is going on in my fingers and hands (and arms and shoulders and all the way down to my toes) is just not conducive to that. Stop. Making breakfast is going to be a bitch. Stop. Peace, I’m out. Stop.

Episode 20: Home alone!

Watching back the video, I cannot help but notice all my “uhms” and “ehms” and my inability to make most of the points I wanted to make. This is quite frustrating to me as I consider myself a skilled communicator and one who can easily and adequately verbalize her ideas on the fly. It scares me to think how much of my brain is affected by my neurological infections as well as all the neurotoxic byproducts currently circulating in me. Writing this now, I feel that my brain is just not cooperating, words and flow aren’t coming, I constantly feel like I am just waking up from a severe blow to the head…

That being said, I simply need to remember that this is not permanent and that this, too, shall pass. I cannot dwell on this at it has the potential to make me very sad and discouraged. Time to focus on the beautiful sunny weather, the wonderful people I love in my life and enjoy all the things that will allow me to have a good day!

ps. I don’t take my frustrations out on Jan at this point, what I meant to say is that it happens that I am frustrated at the world and that I get jealous that Jan gets to do much more than me, because I am human and I have desires. But these days I am so very happy when he gets to get away from it all and just enjoy himself!

Lyme disease is a feminist issue

Yesterday a friend of mine suggested I watch The Punk Singer, promising that I would not regret it. She could not have been more right. I loved every single part of the documentary about Kathleen Hanna, from the feminism to the music to the coverage of her late-stage (chronic) Lyme disease. I laughed and I cried, and felt a real connection to the movie.

And today, just like that, I came across this article where Sini Anderson, the director of The Punk Singer, is interviewed, and wowza! I was so happy reading the whole article (and equal part heartbroken, of course)! I agree wholeheartedly that health issues such as Lyme disease are feminist issues and need to be approached from that angle as well. I have often felt and known that my health issues were not being taken as seriously as they should because I was a young healthy-looking young woman. And I did not always have the strength to stand up for myself. As mentioned in previous posts, I consider this to be the one true mistake I have made on this journey.

But as Sini Anderson says: “I feel like we are so deeply ingrained in our society, especially geared towards women, to tell them that, you know, they may be exaggerating a little bit, or that… it’s really not that bad, you’re being hysterical.”

And “I think that what is happening is that women are going to their doctors and are presenting with these symptoms and they are being brushed off by their doctors in a way that I don’t think men are experiencing at the same rates. So what ends up happening is they just say, ‘Oh, yeah, I must be making this up’ or ‘I must be making this worse than it is. And I should suck it up.’ And then they go a few more months and then something else happens. And, you know, often times by the time they end up getting so incredibly sick that their systems can’t take it anymore, we’re talking 10 years down the line, 15 years down the line. And they’re so sick at that point that it’s really hard to get them well.”

Sini Anderson is working on a documentary film called So Sick about Lyme disease amongst feminist artists.

The full article: Lyme Disease Is a Feminist Issue: An Interview With Sini Anderson.

USA Lyme disease maps, 1990 and 2012

This morning I came across the following maps and information on reported Lyme cases. I think it’s pretty telling.

Please note the following:

  1. These maps are from 1990 and 2002, respectively.
  2. A note at the bottom says: “According to CDC only 10% of Lyme disease that meet the case definition are reported, meaning if 10,000 cases are reported, 100,000 cases occurred.”
  3. More dark green = more Lyme.
  4. Last I checked, the country all along the north border of the United States of America is Canada.

 

Can someone tell me again how Lyme disease is a new problem in Canada, especially Ontario and Quebec? Have ticks been carrying passports all this time?

I call bullshit.

Total Lyme cases reported by CDC 1990
Total Lyme cases reported by CDC 1990
Total Lyme cases reported by CDC 2012
Total Lyme cases reported by CDC 2012

There were more cases reported in NY state in 1990 (3244) than there were in 2012 (2998). NY does a lot of public education and prevention on Lyme disease, and a legislation is under review which would ensure that patients have access to long term antibiotics. Here’s an article about the issue: Lyme Disease Dispute Draws in State Legislatures, but please! don’t trust anything Gary Wormser of the IDSA says. Him and his crew were and are so knee deep in conflicts of interests regarding Lyme disease that they have been sanctioned by lawmakers and there was even a 49 page study about it in 2010 called The Infectious Diseases Society of America Lyme guidelines: a cautionary tale about the development of clinical practice guidelines. Also, please note that the Vermont bill protecting doctors treating chronic Lyme, mentioned in the article, passed in the last weeks!

You will find more maps like these on the Lyme Disease Association‘s website.

Metronidaz-olé and cognition

marge
That about captures it. I also laugh a lot.

I’ve been on Flagyl (metronidazole, antibiotic number 5) for a week now, and it’s really kicking my ass. Mostly it has been a major increase in digestive distress, migraine, a renewed deep fatigue and increased overall inflammation. Doing 30 minutes of gentle floor yoga, like I did most of last week, has temporarily become too difficult. I’ve had to reduce the distances and frequency of my walks to a minimum as well.

I’ve only taken 1 pill daily (out of a total of 4) and will continue on that dose for the entire 2 week duration of this first “pulse”. With this particular medication, we use a technique called pulsing, where I take the medication for 2 weeks on and 2 weeks off. Flagyl is said to attack the cystic forms of the bacteria and make them come out of hiding (or something like that). I’m not quite clear on the details and honestly have had a real hard time with reading and retaining information these days.

In fact, reduced cognitive function is something that I am really battling. Morning to night, I struggle to express my ideas and finish my sentences. I have a hard time finding words, names and generally have issues with hard drive (brain) information retrieval. I have not been able to concentrate enough to read a book for most of the last 2 months, and these days it’s also becoming hard to follow articles and other lighter reading. All of this worries me slightly and frustrates me greatly.

Feeling that my brain is running at somewhere close to 23% is not a nice feeling. I am working hard at not getting angry when I stutter or when I get confused, when I repeat the same story or information to Jan for a second or third time in a day (and realize midway), or when I have to spend hours on end just listening to music or watching shows or movies. The last part may not sound so bad, and I do appreciate all the good musical moments and viewing I have gotten in, but most days I have a hard time even focussing on a storyline.

Luckily I still manage to have pleasant, inspiring and hilarious conversations with Jan as well as some of my lovely friends. I’m keeping my chin up and trying to (em)brace myself for the best/worse. I am feeling slightly uninspired to do a video, as it seems all I would be able to muster is half coherent whiny repetitions of previous videos. Yup, it’s been that kind of day.

Doctor visits back in 2010

After yesterday’s video, I could not help but think back to all the “shut doors” I encountered on the path to my healing journey. These are very difficult experiences for me to think of as their memory inevitably brings up years of stuffed down sadness, despair and fury. They were torturous insults to my dignity, my self worth and my will to continue on this difficult path.

Rocking a shopping wheelchair today!
Rocking a shopping wheelchair today!

By 2009, I had already been to West Africa (2005-2006) and South America (2009) and picked up my share of intestinal bugs along the way. I had been feeling ill years before my trip to Burkina Faso but I refused to let that stop me from going on faraway adventures (wasn’t that the one true goal in life?!). After treatment for numerous Giardia lamblia, Salmonella typhi and other infections I seemed to aptly pick up everywhere, I was still not feeling well in the slightest; my health continued its steady decline. By the end of 2009 I was in terrible shape: my back made it impossible to enjoy sports or standing activities, my constant headache had turned to frequent multiple-day migraines, I had a lot of signs pointing to major hormonal imbalance, my digestion was worse than ever and was very debilitating, I was tired all the time, my body ached all over and non-stop and I could no longer hold a full time job (I could go on…).

Continue reading “Doctor visits back in 2010”