Archive for the 'Lupus' Category

The Writing On The Wall


April 25th, 2013

poop
I’m not going to lie. Things have been a little poopie around here lately. For one thing, it won’t stop snowing. It’s gotten kinda ridiculous. Poor Harley Rae is from Tennessee and isn’t sure what to make of it. Too cold for southern dog! And beyond that, I’ve been feeling like poop too.

eyeIf you’ve been following this blog for a while, you will know that I’ve been struggling with a MYSTERIOUS ILLNESS for a WHILE. It’s kind of a long story. And it’s pretty annoying. But basically, I have a super FREAKED OUT IMMUNE SYSTEM that likes to MALFUNCTION in all kinds of weird ways. For the last seven years, I’ve been diligently going to the doctor trying to get answers. I’ve gotten diagnosed with all kinds of things. Symptoms range from crazy RASHES to DIGESTIVE DISTURBANCES to RESPIRATORY PROBLEMS to BLOOD PROBLEMS to NEUROLOGICAL PROBLEMS to inflammation in weird parts of my body (like my EYEBALL, for example) to being insanely tired to all out ORGANS GOING OFFLINE (not even sure how to describe what happened here…at the time, nobody else did either). Anyway, it’s a long story. But the links (in all caps) go back to the past.

armLately though, things have escalated a lot. First, I got diagnosed with a BLEEDING ULCER. Then, I started to have these crazy rashes all over my body. They’re super itchy. And they pretty much come and go all the time. I’ve had them for a few months now. Sometimes they get really intense. The thing that keeps coming up with all these weird symptoms and the one thing that they all have in common is that they are all complications of LUPUS. The word lupus really freaks people out. Basically, it means that your immune system can’t tell the difference between your own tissue and foreign cells. So it attacks normal tissue in your body. It can happen anywhere. I’ve pretty much had a gut feeling that that’s what is wrong with me since about six months after my TOXIC EXPOSURE. You just know. But whenever I would bring it up, I would get blitzkreiged with all this negativity. NO!! That’s not what you have. It’s all in your head. Are you sure? Take it back! It’s not true!

I get it. Nobody wants me to have lupus. Truth be told, I don’t want to have it either. Having lupus is bad enough. But getting diagnosed with lupus is almost as bad as just having lupus. It’s a total mind f&ck. I’m not kidding. People think you’re crazy when you say that. Which is part of why it’s so messed up. People who don’t know start to think you’re crazy. But it’s actually a real thing. My doctor even told me about it.

lupus bookThis book talks a lot about it too. It’s the definitive book on lupus written by a guy who specializes in it. Basically, it’s a really hard to diagnose disease. There’s a lot of far ranging symptoms that can be caused by a lot of things. So people go around in a limbo for years until it becomes obvious what it is. Meanwhile, you keep finding yourself in messed up situations.  Because nobody around really understands how sick you are.  Going to the doctor involves getting passed around to all these specialists who do all kinds of tests.  And let me tell you, they aren’t cheap.  Not at all.  And in the end, nobody really knows anything.  So it really starts to feel like a dead end after a while.  Which is why I’ve been throwing a tantrum about NOT WANTING TO GO TO THE DOCTOR.  Honestly, I’m still figuring out what I want to do about it. Right now, it’s just kind of this spector that’s casting a shadow over me.

 werewolfThe word lupus means wolf in latin. I guess the disease was named that because most people get diagnosed when they start getting these crazy rashes that make them look wolf-like. It feels more glamorous to me to think of it like I’m turning into a werewolf when it happens. Somehow more poetic than feeling like you have some weird disease. I mean after all, all the best super heroes are weird mutants that turn into werewolves at night. Right?

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Chronic Urticaria


April 10th, 2013

love fest
We interrupt this love fest to bring you another dose of reality. If you’ve been reading my ramblings lately, you will know that i just ADOPTED SOME AMAZING AND LOVEABLE PETS! Part of this was an attempt on my part to bring my life back into balance after noticing some ALARMING SYMPTOMS THAT I’VE BEEN ATTEMPTING TO IGNORE OUT OF FRUSTRATION WITH THE CURRENT STATE OF OUR MEDICAL SYSTEM. Well I finally got over myself and my ‘I’m never going to the doctor again’ drama long enough to go get it checked out.

urticaria
Turns out I have chronic urticaria. Basically this means I have chronic hives. A pretty frustrating place to be. The doctor said that basically it’s a complication that is often associated with LUPUS (a drumbeat that’s been beating in my world for a while). But just because I have it doesn’t mean that I have lupus. She also said that the hives are triggered by stress. Which is also not surprising considering that I became the CEO OF A MULTI-NATIONAL CORPORATION this year and my business partner is on maternity leave. The hives won’t be under control until the stress is. So basically, I’m on the right track. I think I instinctively knew what I needed to do. But I need to step it up a bit.

Needless to say, I am doing a lot of processing right now. I have a lot to say about all this. But as with most emotional processing, it will probably be happening in fits and spurts coming up. I’ll keep you posted…

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It’s Not Lupus. Or Is It?


March 31st, 2013

cute eye
Hello out there! I’m making up for lost blogging time with some progress reports. Lots of people have been asking about my health and how that’s going. I’d like to report that I started my business, rode off into the sunset, and lived happily ever after. And in a sense, I did. But health issues are a learning process. It’s kind of a journey. I feel like I’ve passed a big barrier in not letting them define my life and my future. But to be honest, I’m still figuring it all out.

welt
For the past few months, I’ve been having a sort of never-ending flareup. It started out like this. These welts. Really itchy welts. At first under my arms. But now pretty much everywhere. Sometimes it would be welts.

rash
Sometimes I would get these rashes. Kind of all over. Sometimes they feel like burns. But they’re not. I’m not really sure what they are.

octagonal
Sometimes they have interesting and artistic shapes.

clusterfuk
Sometimes they are clusters of red spots. Like this. Sometimes, they look more like clusters of mosquito bites. But in spots where you don’t really get mosquito bites.

mosquito bites
When I do get mosquito bites, they look more like this. Fluid filled weirdness. (NOTE:  This pic is old.  There are no mosquitoes right now.  It’s winter.  At least in Minnesota.)

Typically, a person might go to the doctor for things like this. And don’t get me wrong, I really like my doctor. And I think we have a good relationship. But I have a very LONG HISTORY of going to the doctor with my weird issues and SPENDING TONS OF MONEY on GETTING THE RUNAROUND. After a while, it becomes an intelligence test. You have to ask yourself some important questions. ‘Is this actually helping me?’ ‘Can I afford this?’ ‘Is this helping me to create a life that I want to live?’ I think the answers to these questions are different for different people. But ultimately, you have to choose the path that’s right for you.

eat more kale
My answer to all the above questions is a resounding no. It’s not helping me. I can’t afford it. And it’s not helping me to create a life I want to live. I feel like it might have been an acceptable path for an era where health insurance actually covered things. But times have changed. Dramatically. And ultimately, I have to be honest with myself. I’ve gotten very little help. I’ve been emotionally and physically abused. I’ve spent thousands and thousands of dollars on a wild goose chase. I’ve gotten no answers. And I’ve wasted hours and hours of my time. It’s not the foundation for a life I want to live. Every now and then, I’ll freak out about some scary symptom that comes up. A month or so ago, it was that I woke up in the middle of the night and barfed up a ball of bloody mucous. I went to the doctor. It turned out I had a bleeding ulcer. Kind of a rite of passage for a new entrepreneur. My blood tests showed that I tested positive again for a couple autoimmune screeners. Rheumatoid factor and ANA (anti-nuclear antibody). Honestly, my gut feeling is that I have lupus. I’ve had this gut feeling for years. Since six months after my toxic exposure. I kind of knew. I think most people know. But I went through years of people telling me it was all in my head. And trying to convince myself otherwise. Ultimately, I realized that this was doing more harm than good. I need to accept who I am. What I am. What I’m going through. I do not need to spend energy denying, trying to fit into other people’s boxes, being in some weird limbo because my test results aren’t consistent with other people’s expectations. It’s not helpful. It’s painful. It feels like a step backward. I’m frankly not capable of humoring the situation any longer. I’m a reasonable person. I’m well mannered. I’m agreeable. It’s really not me. It’s the situation. And this situation isn’t working for me. My doctor suggested that I go to see more specialists (a really expensive, really frustrating, really unfruitful endeavor). This prompted a meltdown where I told her I was never going to the doctor again. Kinda dramatic, I realize. But that’s where I’m at right now. And apparently, this is considered a normal reaction to this situation.

What’s the answer? This is a good question. And one that I’m still kind of processing…

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Food Fight! Grocery


May 20th, 2012

food fight!

Portland Peoples!! Good news! Our cheeses just got picked up by FOOD FIGHT! GROCERY in beautiful Portland, OR. We sent them four cases of our best flavors (unfortunately, only three of them got there. Thank you, post office!) plus free samples! Go on down and check it out!

nut cheeses
Mmm…Nut Milk Cheese! Check out the latest REVIEW OF OUR CHEESES HERE!

every dayAnd the good news is that if you can’t make it today, you can go down tomorrow. Because apparently, Food Fight! is open every F^&*ing day. So there you have it! In other news, progress on opening our NEW SHOP has slowed. Mostly due to the fact that I am having to continually relearn the lesson that I have LUPUS (OR SOMETHING LIKE IT). Ugh! I was really riding a wave, wasn’t I? Not sure what this means yet other than that train was moving too fast for me. And I might have to get off and wait for a slower one. Don’t know yet. I’ll keep you posted…

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Critical Max and the Radio


May 10th, 2012

ampersThings are reaching a critical mass this week. In fact, it is so damn exciting that I am having a lupus flare-up. Spent most of today asleep. Just taking it all in. This has been the most incredible ride of my life. It’s very up and down right now. The big work/shifts are happening now! I vacillate between being overwhelmed by the impossible and being inspired by the impossible. It feels like I’m pushing a giant boulder up a mountain. But I am continually lifted up by all the beautiful people out there. THANK YOU!! I just got an email from another store. There are some people out there that are trying to help me! It’s crazy. I just keep hearing from stores saying that their customers are demanding my product! I can’t express to you how grateful I am for your help. It really keeps me going. I was so ready to give up today. On a lot of days. But that really keeps me going. Much gratitude!!!  You are making a difference to me.  And I am so thankful.

This picture is from a radio profile they did on me for 10,000 Fresh Voices (a program on KFAI).  Check it out HERE.

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Rainbows and Crop Circles


April 13th, 2012

rainbow car
Well, things are moving along at a pretty good clips these days. It seems like magical moments are all around. Starting a business is fraught with impossible challenges. But lately, it feels a little like I have a rainbow beam following me around. I’ve just been tuning out the impossible. I just don’t pay it any mind. And I just keep moving forward.

mural
This week my rainbow beam is coming to me from the RAINBOW GROCERY in San Francisco, CA!!!! I have heard so many good things about this coop! From everyone I know in town.

kickstarter av
So I’m very pleased to announce that they are the latest retailer to start carrying my cheese!! The first order is arriving today. And there will be FREE SAMPLES while supplies last! Go on down and check it out.

crop circles
People keep asking me about my health. How am I holding up? Am I keeping it together? Things are going well. Aside from the usual funky displays of immune system dysfunction, I’m doing great! My energy is great. And I feel like I’ve finally rebuilt my blood enough that I’m not catching every bug that comes around.

dew drops
I attribute both of these outcomes to the high volume of WHEATGRASS I’ve been consuming very regularly. I think it’s also responsible for finally getting ahead of that dreaded CANDIDA infection that I struggled with forever.

octagon
These little crop circles on my arm perplex me. They are the oddest little octagonal shape. Perfectly reproduced. So intriguing. Not sure what that’s about. But don’t really have time to ponder it now. So I’ll just put that in a pot and throw it on the back burner. And I’ll keep you posted on how things develop…

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Breaking Thru Barriers


February 3rd, 2012

erin
So I don’t know if any of you have been following this story. If you have been following my blog for any length of time, you will know why it’s got me all fired up! ERIN BROKOVICH has caused QUITE A STIR lately by investigating a MYSTERY AILMENT that has been afflicting a cluster of girls in upstate New York who she believes were exposed to toxic materials after a train derailment.

dr drewInterestingly, she relayed some of the pertinent information in the case to Dr. Drew on his show recently. I was actually surprised that it was getting coverage. Because my experience has been that this kind of information is being actively supressed (causing much undeserved pain for people suffering from these issues). Lo and behold, within 24 hours, the CLIP WAS MYSTERIOUSLY REMOVED from their website.

leroy
Make no mistake! This is a gigantic development in the area of environmental illness. I actually suffer from these symptoms myself (as has been documented ON THIS BLOG). Mine also started after I suffered a toxic exposure. I really feel for these girls. It’s really a disturbing thing to have to live with. And there aren’t a lot of answers out there.


WATCH THIS VIDEO!

It’s truly tragic. People suffering with these issues need support. But instead they more often get brushed under the rug. To suffer in silence. I just want to put it out there. I hear you!! I am listening! And I wish that more people were. Just remember. Part of breaking thru barriers is meeting resistance. It’s built into the process. Stay positive and keep pushing, girls! There’s a lot of us out there. And they can’t keep us down forever!

kickstarter
About three and a half days left in my KICKSTARTER CAMPAIGN. Please help me spread the word!

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I Heart Yoko


January 14th, 2012

wayne megaphone
Happy New Year! This post is a little delayed. Forgive me. For I have been BUSY. But I had to take a moment to absorb this because it was so inspiring to me on so many levels. How did I ring in 2012? I spent it watching THE PLASTIC ONO BAND and the FLAMING LIPS in Oklahoma City. (Thus, the visit to my ALMA MATER).

yoko ono band
The show did not disappoint. It was so thrilling. I really struggled to be there (due to my MYSTERIOUS LUPUS-LIKE AILMENT). But I fought for it and one (this was a typo which I decided to leave as is). They really went all out. The lights and the balloons were incredible. No expense was spared. It was absolutely breathtaking. Yoko is an artist of the highest caliber. She is amazing. I can’t say enough nice things about her. She is such a rare gem. Intelligent, fierce, intuitive, compassionate, and actualized. Most people go through life living from the outside in. Only very rarely do you encounter a person who is truly actualized. From the inside out. Like Yoko. She is a woman who was so far ahead of her time that a lot of people still don’t get it.

ballons
The show opened with Yoko singing, ‘It happened at a time in our life when I least expected…’ followed by the most gut-wrenching, raw, painful wail you have ever heard. It was abrasive. And it came out of nowhere. And just blew you away. So much pain. Transformed into art. Truly incredible.

yoko sean nels
The band was super tight. But also loose. In the best possible way. One of my favorite moments was watching Nels and Yoko going off on each other. Nels also plays in the band, Wilco. But he’s really versatile. My boyfriend has toured with him a couple times. So I’ve heard a lot of his more experimental stuff. And I’ve seen him play quite a few times. He can be pretty out there. The first time I saw him play, I was bowled over by this bizarre sound. I couldn’t figure out what it was. It was out of this world. So I started looking closer at what was going on. And I noticed that Nels was literally playing his guitar with a springed coil. Instead of a pic. The guy can get wacky! But Nels with Yoko is a very interesting combination. Yoko introduced this crazy noise jam by saying, ‘This is a song that I first played with John. And then Sean. And now Nels…It’s about my childhood or something.’ (Who knew that Yoko has such a dry sense of humor. I am particularly fascinated by this because my mother is Japanese. About the same age as Yoko. And I had always assumed it was because of the language barrier that she didn’t have a sense of humor. It’s not that she doesn’t have one exactly. But something like this would definitely fly under her radar. That is making a connection to another culture that is very unusual for a foreigner). She then proceeded to rock this jam with Nels.




She almost sounds like a guitar. She’s just fully out there. No holds barred. And Nels gets in there and juices it up. It’s unbelievable. She just has no fear. She’s just out there. No safety net. No predictable structure. She’s so fearless that it’s beautifully poetic. Not in a contrived way. But just real. And raw. And present. And truly her own. I feel like this was the reason I needed to be there. I needed to see this. And I needed to draw inspiration from it. This is supposed to be my mantra for 2012. ‘No fear’. It’s like when a person gets sick, they inevitably encounter all kinds of overwhelming situations where they don’t measure up. And I think that in response, a person naturally develops a sense of fear. Of being in situations where they will be overwhelmed. And this is protective and helpful to a point. But in order to rejoin the world of the living, you reach a point where you have to release that fear. I am at that point now. And I think this is why I needed to see Yoko. And why she resonated with me so much.

glasses
The show was hard for me. Mostly the crowd. It was a very packed room. And I often felt overwhelmed. Like the air was too thin. And I might pass out. And I kept going to the back of the venue. To get more air. But I wasn’t leaving. No matter what.

The Lips set was also amazing. Wayne came out in his bubble again. My boyfriend shot this FOOTAGE OF HIM (For some reason, this drat computer won’t let me embed this video. So you have to click to it. Definitely worth it). Truly surreal. The amazing light show and the bubble plus the lips. It was like being in an alternate universe. It was so great that we went two nights in a row. I paid for it though. I spent the entire next day with my head in a garbage bag. But hey! That’s the price you pay sometimes.

moi
This is 2012. No more living in the protective bubble of being sick. It’s time to pop the bubble and get out there and rock. Just like Wayne. And Yoko. I am going to live my life on my terms. And that’s all there is to it. If I allow myself to live in fear of my illness, I will be defined by it. I don’t want that. I am the definer here! And guess what? No illness is going to hold this girl back. Watch out world. Because HERE I COME! Thanks for the inspiration Yoko!

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Anti-Nuclear Meltdown


December 8th, 2011

snow
Just when you thought it was safe to go back in the water, you realize it’s a little cold for your taste. Isn’t that how it always goes? Well, I’ve been having this kind of ongoing discussion with my doctor ever since my LAST MEDICAL MELTDOWN.

eye drama
Remember this one? When my eye swelled up for no reason. Again. They were going to send me back to rheumatology when I had a meltdown. Long story short, I’ve already been there TWICE. It was awful. Really expensive, really emotionally draining, really unproductive, frustrating, and negative. Basically, a step in the wrong direction on multiple levels. So I had a MELTDOWN.

mosquito bite
If you’ve been following this blog for any length of time you will know of my struggle with a MYSTERIOUS AUTOIMMUNE ILLNESS. Despite years of BIZARRE UNEXPLAINED SYMPTOMS and HOSPITALIZATIONS following a TOXIC EXPOSURE. It’s kind of a long story. (An epic saga, if you will).

wheatgrass
In any event, I got the news last week that I tested positive for ANA (anti-nuclear antibody) again. This has actually happened a COUPLE TIMES already. And each time, I went through the testing process and was worked into a tizzy only to be told that it was all in my head. Apparently, this is a pretty common occurrence for people with autoimmune disease. Having a meltdown from being run through the ringer when asking for help is par for the course. According to my doctor, people (who are clearly sick) can go through this process for up to twenty years! And doctors recommend anti-depressants. To help patients get through it. Really? Seriously?! I need to go on drugs to tolerate an unacceptable situation. Two words. NO THANKS!! I’ve done my time. After that, it becomes the recipe for insanity.

I had a long talk with my doctor about it. She seems to understand where I’m coming from. And sympathize. At this point, it appears that it’s one of two things. It’s either lupus. Or it’s some other disease that’s closely related to lupus that doesn’t have a name. So, basically I have lupus. Lupus basically means that you’re immune system is miscalibrated (which mine definitely is). Your immune system attacks normal cells in your body causing disease. I personally think that my immune system is attacking toxic stuff that has become part of my body since my exposure. And the reason I think this is because I have these violent seizure-like episodes (called MYOCLONIC JERKING) at times. It’s always centered on my diaphragm. And it literally feels like my body is trying to kick something out. In the end though, a name is just a name. It’s not going to change my symptoms. It’s not going to make me feel better. Why do I care? I am already self-medicating with my anti-inflammation diet. I’m not interested in going on the drugs. So why put myself through all this? Truly. What is the point? The medical testing and wild goose chase are literally going to bankrupt me. I’m not doing this anymore. I want my life back! And I don’t want to spend the remaining precious energy that I have on pointless dysfunction. I think that as long as patients tolerate this situation, it will be perpetuated.

kits
There are more important things in life. Like, look how cute my kitty is? OK. Technically, she’s my boyfriend’s kitty. But she snuggles with me more (probably because I’m ALLERGIC TO HER).

twin town
Oh yeah. And I love to play guitar. And I used to be in a band. And do all kinds of interesting things. And those things have been passing me by. It’s time to reclaim them.


So that’s what I’m doing. Check it out. I just played a recital with my GUITAR TEACHER, Jeremy, last weekend. And I am getting ready to officially launch my business (stay tuned for details coming soon)! I’m on a mission to rebuild my life on my terms.

flatbread
And it all starts here. Check out my latest video for this RUSTIC HOLIDAY FLATBREAD. My boyfriend says it’s my most creative recipe yet. Not only does it not exacerbate inflammation. Like normal bread. It’s actually anti-inflammatory! I’m filming the companion video for this today. A holiday cheese platter. Check back soon…

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