The Religion of Science

I know, it’s been a long time again. I think the longest break I’ve ever taken from my blog. I’m not certain about that, but I don’t have the energy to verify it. I’m having a pretty good ME relapse – I’ve been mostly confined to my sofa, save for short bursts of activity, for most of a week.

I realized just how sick I was when I noticed someone being wrong on the internet and I didn’t have the will to do anything about. I know this is a shortcoming of mine – I can’t just watch someone be wrong and let it go. I feel compelled to offer facts that I can prove. I don’t try to force the other person to my perspective, but I do try to offer facts that might help them change their mind, should they be willing and open minded. I am willing to change my beliefs when presented with evidence that contradicts them, so I hope that others are willing to do so as well. I mean, that seems to be the ideal way to be, right?

So, science. I want to establish up front that I like science. A lot. I liked it so much that I went to college and got a degree in biology. I believe in the scientific method. It freaking rocks. I like that we can get results from scientific experiments and that we can replicate them. Using those results, we can solve problems, or create new ones if we are so inclined. Yay, science!

On the other hand, I feel that some people have allowed what they believe to be science to become their religion. They defend what they think is true, insinuating and sometimes outright saying that anyone who dares question the validity of their beliefs is an idiot. That’s not ok.

For the sake of my point, let’s just say that religion and God and all that are real. I’m not asking you to actually believe in them if you don’t want to, I’m just asking you to see the analogy I’m going to present. In fact, let’s limit it to the Christian God for the sake of this argument.

There are a lot of Christian religions – do you know why? Because each group believes that the other groups got something wrong. The Christian religions mostly follow the bible, and they mostly get the same information. The difference is interpretation. In this argument, the real God handed down some information about who he is and what he expects of you. The problem is, he handed it down through human beings. From the first recipients of the word of God on down, it’s been a giant game of telephone.

When you go to church, you go to hear someone’s interpretation of the word of God. More to the point, you go to hear someone’s interpretation of someone else’s interpretation of the word. Along the way, through all these translations, some facts might get distorted or misunderstood. That allows members of a church to have legitimate disagreements, and sometimes the disagreements are so big that the church breaks into smaller sub-religions. It has happened throughout history, and will likely happen again.

Science is a lot like religion in this very important respect – you are hearing someone’s interpretation of what they observed after an experiment. Science is real, but sometimes one’s perception of it is… inaccurate. This can come from an experimental mistake, a bias (the experimenter wants a certain result or is being paid to get a certain result), or simple misinterpretation. What’s important is that the “scientific” information most of us receive is translated through an imperfect human being.

I read a book called, “How We Do Harm” by Dr. Otis Brawley. He quoted someone he learned from when he was younger as saying (and I’m quoting from memory, so read the book if you want the exact quote), “Figure out what you know, what you don’t know, and what you believe, and label them accordingly”. That quote really stuck with me.

A lot of what we call scientific fact isn’t fact at all. The scientific community doesn’t “know” many things, it just believes them. Just drawing from my own life experience and study, I’ll talk about medicine, specifically health and nutrition. For most of my life doctors “knew” that cholesterol in your diet was the reason we get heart disease. They “knew” that diabetes is a genetic disease, and you couldn’t do anything to prevent it. Except, they were wrong.

Turns out, dietary cholesterol doesn’t have much of an effect at all on blood cholesterol levels. Also, type II diabetes can be reversed with a low glycemic index/load diet. A lot of physicians say exercise is also imperative to reverse the progression of type II diabetes, but I managed it through diet alone. So, based on my experience, that’s likely just a belief, or at least not applicable to all people with a glucose regulation issue.

I recently saw a video in which a Mayo Clinic doctor pointed out that only 38% of current medical practices have been proven to be helpful – the other 62% have either not been studied or have been proven to at best not help and at worst harm patients.

But this was all science when it was implemented, right? Irrefutable fact? No, not fact, just belief. So yes, science is real. But the problem is that human beings create the studies and interpret the results. Mistakes are made and perpetuated.

I have personally been guilty of not differentiating what I know from what I believed. Read my blog from the time I got sick until I figured out what was wrong with me. I said a lot of “this is it…” and “now I know what’s wrong”. I know now that my illness is more complex than I thought at first. I know some of the things that are going wrong. I do not know what else may be hiding in here. I believe that it is manageable, but not curable.

One of the things I remember from church when I was a kid was the leadership telling me that I was not to question what I was taught. That questions marked me as a non-believer, a doubting Thomas, and that I might go to hell for trying to make sure what I heard was the truth. I feel like I am hearing that about science now – don’t question the almighty science, or you will be branded an idiot.

As a scientist, I am telling you, the scientific community and knowledge base is imperfect. The people who are telling you what science knows are imperfect. It’s ok to question. It’s ok to come down on a different conclusion than I have. You’re not an idiot, you’re just thinking for yourself.

I had this conversation with my husband very recently. I commented that some people have started treating science like it’s religion, with unquestioning belief in everything labeled “science”. Then I saw this video today, and I knew it was time to talk about it with more people. I hope that what I have to say makes an impact.

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Choices and Consequences

I fear this may be another of those posts that several people I’ve talked to will think is about them. Again, I will start with a disclaimer that this is really about quite a few conversations I’ve had seemingly within a short period of time of one another. It’s not about you – it’s about what these conversations have brought into my conscious thought.

The word consequences has somehow taken on a connotation that isn’t quite… correct. A lot of people think that the word consequence means something like “punishment” or “the bad things that happen when you make the wrong choice”. Consequence actually just means “result” or “that which follows”. There is no judgment on the goodness or badness of the result, simply that there is one.

I maintain the position that all decisions have consequences. If I get out of bed, the consequences are different than if I spend the day in bed. If I wear a red shirt, the consequences are different than if I wear a white shirt. There’s nothing inherently wrong with any of the choices I’ve presented here, but when I make these choices, things are going to happen that equally lack moral implication.

I support, very strongly, the right of people to make choices for themselves when their choices affect only themselves. When the choices affect other people, the issue starts to get grey and I only support limits on the choices when a bad choice can have nothing but detrimental effects for those around the person making the choice. I do not claim that all of my positions are “right”, but I do feel I do the best I can with an ethical quandary. I think that the principle that most guides me is that I feel I do not have the right to decide for other people what is right and wrong for them.

This is an attitude I try to take into my work with patient advocacy. Make no mistake – I have an absolute view of what is right and wrong for me, what is right and wrong for my husband, and what is right and wrong for close friends and relatives. That said, I fully exercise my freedom to decide what is right for me, I lean heavily on my husband to decide in the way that I think is right for him, and less heavily on close friends and family.

I lean heavily on my husband because I have a lot of information about him – what his health actually looks like, how his lifestyle plays into his health, what he wants his health to look like, what I need his health to be like given that I am his partner, what his feelings are on the risks and benefits of certain treatments, etc. There are still parts that are unknown to me about his decision making process, but I know that he does what I tell him because he believes, in the end, that I have our best interests at heart. I also know that if I weren’t around, he wouldn’t take care of himself. It’s not him specifically, it’s just that I’ve heard time and time again from other wives, doctors, and even from my husband himself that men categorically just aren’t all that concerned about health unless there is something immediately affecting their ability to do what they want. They discount the future because it’s not immediately obvious how what they are doing today affects what will happen down the road.

I lean less heavily on other people I know and care about because I have less information about their feelings on the issues I listed above. Their health affects me to some degree. If, for example, my brother and his wife decide to completely disregard their own health and start taking dangerous recreational drugs (a decision I know they won’t make – this is just a hypothetical example), I will end up raising their two children. This affects my life. I feel that gives me a right to make suggestions, but not to dictate how these other people choose to live their lives. In the end, I want these people to live a life that properly balances the costs and benefits of each choice they have. I want them to be happy. And I want them to remain in my life for as long as it is mutually desirable.

Here’s the catch – I don’t always know how my close friends and family weigh the costs and benefits of each of their choices. As far as strangers are concerned, I know absolutely nothing. For some people, raising the risk for a certain disease by even a small amount is too much. They will do everything in their power to avoid increasing their risk, and often, they will do what they can to reduce the risk. For other people, the inability to eat certain foods that they like is far more detrimental than actually dying of complications from diabetes or heart disease.

While I have a hard time understanding positions that are different from my own, I know that I wouldn’t want someone who values health less than I do to tell me what choices I can make to guard it. I know that someone who values food more than life itself wouldn’t want me stopping them from choosing what makes them happy. Here’s the bottom line – we each have just one life. We have to spend each day deciding how much we can sacrifice, how much we want certain things, and it has to come out to the right balance for ourselves. Some people want to be nothing but happy all the time, and do what they want regardless of how it affects others around them. Some people care about how the others around them feel, and that factors into the balance they choose. As much as this is not a pc thing to say, some people function best when they have something to be unhappy about, so they make choices that the rest of us view as sub-optimal.

I would be lying if I said that I don’t get frustrated when someone makes what I view as the “wrong” choice. I also hate not doing something about it, but trying to impose my will on someone else is actually counterproductive. When someone tries to bully me out of my choices, it only makes me want to shut down and dig my heals in further. When someone calls me names like “stupid” or “moron”, I immediately decide that they are telling me about themselves and ignore all that is said after that. I would rather be led to a new decision than to be dragged into it. This is the difference between an internal compass and an external one. If you are telling me that I am making wrong choices, but I cannot inherently see why my choices are problematic, I am going to continue behaving the way I did before, but I’ll just make sure you don’t find out about it. If you can give me information that makes me want to change my internal view, then I will change my behavior. It’s that simple.

It works that way for most people.

I’ve found over the course of my life that when people make decisions I don’t understand, it’s usually because we’ve been exposed to different information. The example I most commonly encounter currently is the issue of purposely eating gluten when you know you have a problem with it. I cannot understand why anyone would value bread enough to give up health for it. For the people to whom food is more valuable than health, we will never come to a similar conclusion. I have learned though, that people who value health but continue to eat gluten when they know for sure it’s a problem for them, it’s usually that they don’t know what I know. They don’t know that you aren’t just getting a stomach ache or a fever or a rash. They haven’t attended the autoimmune conferences that I have in which I learned that inflammation is the root of most chronic disease. They don’t know that continuing to eat something you have an allergy to raises your risk for diabetes, heart disease, autoimmune disease, cancer…

If I encounter someone who is making “bad” (I use that word in quotes because this is my value system, and is not necessarily applicable to others) choices, instead of shaming them, I try to educate. For the gluten example, I teach them that what’s really happening inside your body is just like a chemical burn. You get areas that are literally hot and inflamed, and you get scars. You overwork your immune system, and overworked cells (just like overworked people) make mistakes, leading to all the other long-term consequences. I back up my position by pointing them to the primary research.

More often than not, the people who share my value system eventually make a similar decision to the one I have, to not deliberately cheat themselves out of health for a piece of cake. There will always be differences in the degree – I mean, I’ve been tempted once or twice to go to freaking Krispy Kreme and just eat a box of donuts, because they are that good. I didn’t do it, though, because I thought about the consequences of that choice. I will have a stomach ache. I will lose a day (at least) of my life stuck in bed. I will increase my risk of the already prevalent heart disease that runs in my family. I will be one step closer to the diabetes that has been threatening me since I was a teenager. If I didn’t know the consequences, I’d be way more likely to eat the donuts. It’s so much easier to make the “right” choice when I have a reason to do so. Other people might be a little more lenient – maybe have something they shouldn’t because it’s just once, and the problem is really just the accumulation of damage over a lifetime, and the occasional mistake isn’t going to kill you. It’s their choice. I can only inform, not force.

My overarching point is this: You have the right to make decisions for yourself. You can be expected to weigh in on other people’s decisions that affect you, but your total control level is lessened. You cannot make someone else do something by brute force and expect it to stick (or expect them to continue liking you). And really, when you are judging someone else (and we all do it) – ask yourself: What makes me the moral authority on this subject? Does this person’s choice affect me? Do I know enough about this person’s value system to accurately assess why he makes the choices he does? Can I make my point effectively without insulting the other person and achieving the exact opposite of my desired result?

Food for thought.

All the Rest

This week, I’m resting. It’s not something I like to do, but it’s something I understand I must do. In just about two weeks, my brother and his family are coming out for Christmas. I am utterly thrilled about this, but I have to prepare. Preparing for me is not like it is for most people. For most, it’s about cleaning the house and decorating to make the guests feel like it’s really Christmas! For me, it’s about storing as much energy as I can so that I can actually enjoy visiting people who I don’t get to see often enough. The house will be clean(ish). There will be some decoration (Michael put Christmas lights on the outside of our house for the first time ever!). It just won’t be up to the standards I would like. But my guests will understand.

Resting this week means that I am not going to any appointment outside of my house. It doesn’t mean that I won’t leave the house at all, it just means that I have the luxury of doing it if and when I feel up to it. The problem with my appointments is that I have to go at the time scheduled, but sometimes I feel sick and really wish I could stay home instead (and this includes fun things like knit night). The stress of the whole thing makes it so I use more energy than I might otherwise. I will have none of that this week. I am still going to work, but that’s easy enough because again, I can do it on my own time. I build in 3 days to my expected ship date to account for such things as “I don’t feel well enough to make the 2-minute drive the the post office and Michael is out of town and can’t drop it off for me.” The people who ask me for custom jobs give me a long enough lead time that I can easily meet their expectations. I have no worries about this.

This time, I’m a little more at peace with the idea that I have to rest. I still don’t like it, mind you, but I have found something that makes this need acceptable in my world. I got the testing back from Dr M, and finally, I look sick on paper. I’m sick enough that a pure medical doctor could see it. I’m in late stage adrenal failure. My acupuncturist doesn’t like the word “failure” to describe the condition, but I call it like I see it. My adrenal glands cannot keep up with the stress on my body, and they are now failing to do their job. I don’t judge them for it, I just know they can’t keep up.

Don’t get too excited that I finally have a diagnosis. I don’t. This is just like the ME/CFS diagnosis – adrenal failure is a symptom, not the disease. This also isn’t to be confused with Addison’s disease. As I understand it, Addison’s is usually autoimmune, with a few cases being about traumatic or congenital damage to the adrenal glands, and this is the primary disease. My adrenal glands are not damaged, they’re just overworked. The catch is, we need to find out why my adrenal glands are working too hard. There is some stressor hiding and completely overtaking my body. I have no evidence of infection or parasites. I am not emotionally stressed. I don’t seem to be having any more food reactions. It’s important to figure this out because adrenal insufficiency is life threatening.

Dr M was surprised when none of his testing showed a cause for the adrenal insufficiency. He was sure I had a parasite or infection that was just overlooked by my previous doctors. On the bright side, when the testing came back, he acknowledged that I am not an easy case, that I don’t fit into one of his boxes, and that I am really, really sick.

I have a theory about the biggest contributing factor to the adrenal problem. I think it’s my heart. I think that when I have low blood pressure and my heart tries to race to keep up with my cardiac output needs (a function powered by adrenaline), it puts demands on my adrenal glands that I can’t keep up with. I think that the dizzy spells I have been experiencing in the last few weeks are due to the fact that my body just can’t keep up, and it can’t get blood to my brain. I am going to mention this to Dr M the next time I see him. My next appointment is going to be after Christmas. He wants to retest and see if he can find parasites or infections that he can treat. We’re doing a protocol right now that should coax out anything hiding. If he doesn’t find something, I think that my theory should be explored. I am feeling more and more that my primary problem is cardiac output. If you don’t have enough blood circulation, it suppresses the immune system, makes you tired, and causes stress. Cardiomyopathy (or more particularly, whatever caused it) is very likely the root cause of my condition.

So, now that we’ve covered the technical stuff, let’s move on to the fun things!

I’m still doing well with my shop. I am growing quickly, and I’ve inquired with a wholesaler about forming a relationship so I can carry a larger variety of things in my shop! One thing I want in particular is commercially dyed wool so I can better fill these sampler packs I developed:

Wool Paint Sampler for Felting or Spinning - Hand dyed Merino Wool Roving in Flower Colors

I got the idea from these really cool felted paintings I’ve seen on Etsy. I realized that the people who make this art view wool like paint. I actually picked up needle felting supplies so I could try to make things like this – not that I have that level of skill,  but I can create simple things. I’m working on Christmas themed felt coasters right now. They look a little primitive, but skill takes time to develop.

I’ve also been making new cat toys. It helps that I have kittens to demo the products – I feel like this is a win for everyone involved. I get to test the toys on the kittens to make sure they are something cats actually want to play with, I get pictures of kitties actually using my toys so people can see that real cats like the toys, and the kittens get a little exposure (I mention in my listings that the kittens will be up for adoption, and if someone wants to pursue the adoption I can send them to the shelter to see if they are a good match).

I just developed “Kitty Fusilli”…

Cat Toy - Set of 3 Kitty Fusilli - Wool/ Cotton/ Silk/ NylonCat Toy - Set of 3 Kitty Fusilli - Wool/ Cotton/ Silk/ Nylon

and August helped me demo them! He was such a good sport with my toys.

I also got a few shots of the crocheted ring toys, again with August demonstrating how fun they are!

Cat Toy - Set of 3 Crochet Ring Toys for Cats - Wool/Cotton/synthetic Fibers - 2-inch Plastic RingKitty Toy Bliss

I love that last shot of August! He doesn’t always have his eyes crossed, I just think the toy was so close up that he had trouble focusing! He just looks so silly-happy about his toy!

August came to me about a week ago with his mother and three brothers. We have Snow, Mr Gold, Cricket, Charming, and August.

Snow Unnamed boy1 Unnamed boy2 Unnamed boy3 Unnamed boy4

With a little help from my friends on Facebook, we chose a “Once Upon a Time” theme for this little family.

I am working on getting adoption portraits for the kittens. The above picture of Snow is my choice for her at this moment. I have a series of pictures of Mr Gold, and I think that the last one might be his adoption portrait:

Mr Gold's toy 1 Mr Gold's toy 2 Mr Gold's toy 3 Mr Gold's toy 4 Mr Gold's toy 5

 

I have one more great picture from our play sessions, but this one isn’t useful for adoption.

Duck's Kitten

Duck strikes again, absolutely loving the foster kittens as if he were their mother – see his smile? I can’t say enough about how great Duck is with the kittens. He plays with them and grooms them as if they were his.

So, for having to deal with less than ideal circumstances, I’m doing all right. And for now I’m going to rest, knowing that I’m doing the best I can.

Week in Review

The past week has been very eventful for me. I got more expensive plastic bracelets, made a lot of sales, dyed a ton of roving, invested in and started dying commercial yarn, met a new doctor, worked a little bit on some knitting projects… I’m sure I’m leaving things out.

I’ll start from the beginning. On Monday, I was watching tv with Michael when I got the sudden, stabbing chest pain I’ve become so familiar with. I’m not surprised, really, because since I’ve been having more problems with POTS, it ups the chance for me having restrictive cardiomyopathy and reduced blood flow to my heart. No big deal, now that I know what it is. I just lie flat on my back and put my feet all the way up, restoring blood flow and allowing my heart to slow down. The pain was stronger than usual this time, so I had to have Michael move me into position (good thing he wasn’t on yet another business trip) while I waited it out. A half hour passed, but the pain had not, so Michael told me he was taking me to the hospital.

I was still in pain when I got to the hospital, so they hooked me up to the EKG machine and took some blood. I began to improve while I was hooked up to the machines. “You’re fine,” they told me, and sent me home. I got the blood labs back on my way out the door, and I noticed that there actually was something wrong – I had low potassium. It was just below the reference range, but I am sensitive to very small amounts of chemicals (1/8th of an infant’s dose of Metoprolol scrambled my brain, after all). Low potassium can be dangerous, as it causes arrhythmias and muscle cramps. That was my problem. For once I fit inside the box for someone with this problem, and they still didn’t catch it. I believe in my heart that it’s because I’m “too young for heart disease,” so they dismiss that right off the top. It didn’t matter that I told them I had a history of POTS, or that I could usually fix the problem by getting into a position that returned blood flow to my heart. Honestly, I didn’t really need a doctor to interpret the tests for me, I just needed one to run them. Bottom line is, I’m ok now. Adding a potassium supplement has helped, except for today. I am not sure if I took the supplement yesterday, and I didn’t want to over do it (too much potassium can have bad effects, too). I think I must not have, given that I woke up feeling awful. Of course, it could have been the work I did yesterday that I’m paying for.

I spent all day on Saturday dying wool. I definitely plan to list most of it for sale as is, but I may spin one or more of them into yarn. I dyed some commercial sock yarn, too. I saved one skein to knit up for myself and see how it looks and to check if it’s really enough to make most pairs of socks. I only got 360 yds in 100g of yarn, and usually I see around 400 yds in that weight (and most patterns call for a minimum of 400 yds). Of course, I measured the yarn on my niddy noddy, and I’ve always questioned the accuracy of that method of measurement.

  This is some of what I dyed. I had so much that I needed the space in two bathrooms to dry it!

I also met a new medical doctor this week. Well, he’s a DO (doctor of osteopathy), but still, he has access to some things the chiropractors don’t. He is also a chiropractor, which informs his approach to health care, and thus informed my decision to interview him and see if he’s good enough for my team. I’ll cut to the chase – I am going to use his services. I like the guy (Dr M) – he’s personable, he listens to what I have to say, he believes in ME/CFS (a tall order in a medical doctor), he prefers a nutrition and lifestyle approach before pharmaceuticals are introduced, he says I’m not telling him something he hasn’t heard before (never heard that before – seriously!) and most importantly, he has new ideas. I’ll admit, the idea he’s fondest of was something I’ve already explored with Dr B, but maybe different testing and a new approach might yield some results. He thinks I have a problem with mold, that it is living in my airways and maybe even my heart. I’ve seen that on Mystery Diagnosis, actually, so what the heck – let’s give it a shot. I really liked that he gave me a disclaimer that not a lot of doctors do – he said I’ve been sick for more than twenty years, and he doesn’t expect me to be better in less than two years (and that there will be ups and downs). I already knew this, but I appreciate that he isn’t claiming to have “the answer” and a quick fix. He also correctly guessed that a lot of doctors wanted to offer anti-depressants to treat me, because ME/CFS is, in their world, a psychiatric disorder. There’s only one thing I really don’t like – he failed a test that I give many of my new potential doctors. I gave him a copy of the ME/CFS Guidelines for Medical Practitioners, explaining that that document had a very accurate description of what I have been dealing with for the last two and a half years (and longer on a less intense scale) and what treatments have and have not worked for me. He took it, flipped through, then gave it back. It has been my experience that practitioners who keep the copy and read it on their own time have been a better fit for me – it shows that they are interested in what I have learned and what I believe is going on. The ones who don’t look at all or give it back tend to arrogantly think they know everything and ignore any input I may have, and they miss the fact that I am fine on paper but obviously sick in person (and subsequently declare me “just fine”). I think this may not be the case here, but I am alerted to the possibility that he is, in fact, just like the others.

In knitting news, I have had very little time to work on things that for myself or my friends – my time really has been devoted to my shop. However, I did manage a little knitting this week. I’m making socks for Dr B’s nephew:

and I’m making a Baby Surprise cardigan for Dr B and his wife’s expected baby. I have no pictures of that yet, but I hope to remember to get a few before I visit them next month. I’m not making promises – my memory has been pretty terrible lately.

So, that’s it this week. I need to get back to editing photos, and maybe even get a little sleep tonight. Wish me luck!

I’m working all the time

I’ll admit, I had no idea what I was getting into when I decided to open Kitty Mine Crafts. I spend far more time on photography and marketing than I do making the yarn and fiber stuff that I sell. I am at this all hours of the day. It’s a lot of work. Work I love, but nonetheless, work.

The thing is, when I put this much time into something, it wears me out. Not like a normal person – I mean, I end up spending more time lying down than I would like. Sleeping in the middle of the day. Despite that, I am happy to be working. People who have commented on my shop in person have simply gushed over it. I feel like I’m doing a good job. I get lots of views and likes on my page, but not many sales. My next task is just that – figuring out how to land that sale after a person looks at my listing.

I’ve mentioned the concept of how my energy works before (the spoons story). Well, in order to spend my spoons on the job, I had to give up something. First, I gave up one of my chiropractic adjustments each week. This was possible because I am taking a new supplement, Calcium D-Glucarate, that is helping A LOT. It lowers estrogen levels, in turn lowering inflammation levels for me since I seem to have a bad reaction to estrogen (hard to get away from it when you’re female, or I’d just avoid it). I then moved my acupuncture to every other week. This might be a mistake because she does a lot more for me, including something called “interferential therapy,” which had been helping the pain levels some. I can’t eliminate the massage – I think I’d die of pain and inability to move. I know I need to eliminate more, but that will solve itself some when a coursera class I am taking, Gamification, is over with. I’ll be taking more classes in the future, but I’ll get a break for a little while. I might have to adjust my participation level as well – you can just listen to lectures, or, if you do the work, can earn a certificate. I like earning certificates. Makes me feel smart. And finally, I’ve neglected the blog again. I really want to keep up with it, especially since I’ve improved my photography. The kittens photograph so well!

As long as I don’t give up too much in the health care realm, I think I can continue to work hard on my business. Here is a small sample of things I’ve made in the last few weeks:

Half and Half Orange and Black

In case you’re wondering, no, I haven’t started using a light box – I just photograph right in my back yard. The lighting is great for that here in Colorado. I’ve reached a level with my photography that is good enough for my business. The pictures aren’t the best of all the listings, but they are better than most. It really isn’t reasonable for me to reach a level of skill that could be considered professional. If that were the case, I’d be selling my pictures instead.

My shop has had some success thus far. There is a group called “The Handmade Movement” who sneak attack newer Etsy shops. That is, they form a cash mob and buy a bunch of your inventory in order to give your business a boost. The people were incredibly nice – I recommend you go join them if you want to commit philanthropic acts on new, handmade products businesses. One of them even blogged about the event! I’ve not had any sales since, but I fully expect to do so in the future. I think I’ve done well for a shop that has only been open two months. I think the holidays will help, too.

I have no new kittens at the moment because we were traveling. Last week, Michael and I went to Boston, then drove to see Sara. I love visiting her – she and I have so much in common. If I had my act together, I could have joined her at a craft fair she was doing that weekend. She makes these great baby blankets – I might have even purchased one to give as a gift to another friend who really appreciates handmade things.

I returned the kittens to the shelter before we left. They should all be adopted by now. These are the pictures I gave the shelter for their profiles (far better than the ones they started with, I assure you):

 

You’d never guess if you didn’t know, but Marie and Lamarck, the two on the bottom, had eye infections when I first got them. Their eyes were so infected that the shelter vets thought they might have to take them out. I’m proud to say that we saved their eyes! Now, poor Marie still has a very weepy eye, but I truly believe she will outgrow it as her immune system develops.

So, that’s been my last few weeks. I get to stay home for October, so I’m expecting to get more kittens soon. Next week, when I’m not as busy with the online class assignments. For now, it’s back to work! Yay!

 

 

Adventures in Flight

I think we all know by now that I am not fond of the screening the US government insists makes us safer when we fly. I make no secret of the fact that I think it’s a farce, but I cooperate and even let them steal some of my crafting equipment because, quite frankly, I have to pick my battles. I can replace scissors, needles, etc. I cannot, however, replace my health.

Last week I went to San Francisco with Michael. As I always do, I exercised my right to opt out of the full body scanner. Most airports I travel to seem to have done away with the Backscatter machines because the controversy was just too high, with even the pilots’ unions urging pilots not to subject themselves to the technology. They all still use the full body scanner that uses radio waves, so far as I can tell. I’ve been talking to Dr B – he’s no longer my doctor, but we regularly chat, discussing research we’ve both done on health in general, and what may be specific to my condition. He recently started reading about the effects of electrical radiation (ER), and we both thought it might be worth it to measure the ER in my house and filter anything that is producing a high level. It’s an experiment, but since nothing else makes a huge difference, I’m willing to give it a go.

I object to the use of the full body scanner because that machine would basically undo anything that I am trying to do at home. And what if I am actually sensitive to ER? I have an electrical problem in my nervous system that affects my heart (POTS). I really don’t want to exacerbate that particular problem, so why take the chance? Thus I opted out of the scan. The next passenger in the security line addressed me to compliment my wisdom in avoiding the scanner. She felt that she should be doing so as well, given that she travels every week (why she stayed in the line for the scanner at this point eludes me – she had me to set a precedent, but whatever). I used the opportunity to inform the woman that I did it for health concerns because I have enough chronic health conditions already.

The TSA agent to whom I directed my request to opt out then interjected his unwelcome and derisive opinion, “It’s not x-rays, it’s radio waves. Some people don’t do their research.” He then started trying to bully me out of my decision by insisting that it was going to take a long time for someone to arrive to do the pat-down. I account for that, and I politely told him so. He got crankier while I was waiting, complaining about how none of the other agents were around doing their jobs (the gov’t apparently just cut funding to the TSA, which I consider a small victory on my part, so it was ok with me that it took a longer time).

I immediately started to post my story to Facebook while I waited for the pat-down, in part because I wanted to write down and remember the name of this officer. I won’t reprint his name here because I know the people who will read this on Facebook, but just anyone can read it here, and I don’t think it’s fair to call him out so publicly. He was rude and uneducated. Ignorance is punishment enough in my book.

After I landed in SFO and had a night to sleep on it, I went to the TSA’s website to see if they had anything posted that would validate my position. I felt like this was an issue of someone discriminating against me because I don’t look sick. I was pleasantly surprised to learn that my concern was actually directly addressed in the TSA literature.

1. Our current policies and procedures focus on ensuring that all passengers, regardless of their personal situations and needs, are treated equally and with the dignity, respect, and courtesy they deserve. Although every person and item must be screened before entering each secure boarding area, it is the manner in which the screening is conducted that is most important. I’m pretty sure this a direct violation of that policy. What about insulting me affords me dignity, respect, or courtesy?

2. You may request a pat-down inspection in lieu of going through the metal detector or being handwanded. You do not need to disclose why you would like this option. It isn’t even my responsibility to inform the agent that I have a disability. The TSA admits that my decision is none of their business.

While I was reading this information, I realized this is an issue of patient advocacy. No one, especially the government, has the right to tell me that my health care decisions are wrong. I get insulted a bit (largely by medical doctors) because the treatments I find most effective are not pharmaceutical, and by some people’s logic must therefore be voodoo or placebo. I know I shouldn’t be taking this kind of treatment from my doctors, and I felt fury when I realized that this guy with no health care training whatsoever decided he could tell me what is or is not dangerous to my health.

I remembered hearing somewhere that there is an app that you can download to your phone to make complaints about TSA abuses on the spot. After searching for a moment, I found FlyRights. This app is for reporting ANY kind of discrimination, from disability to religious and anything in between. I sent in my complaint with this app.

As the next few days passed, I started getting letters from the TSA. The first two were simply acknowledging receipt of my complaint and advising me of the process they use to determine if my complaint is in their purview and how they will handle it.

The third email was a form letter from the TSA contact center apologizing for the treatment I received and offering advice about how to more efficiently and immediately submit a complaint in the future. It is very telling to me that they a) need a form letter to apologize, and b) have a more efficient way of receiving complaints that they felt I would need to know about. It implies to me that this happens all the time and I should expect it again. That said, I’m pleasantly surprised they did in fact apologize, citing the same passages in their policy that I identified as justification for my position. I would post the content of the letter here, but I read a clause at the bottom that I don’t want to be on the wrong side of. The clause says:

“NOTICE: The information contained in this message and any attachments is privileged and confidential and therefore protected from disclosure. If the reader of this message is not the intended recipient, or an employee or agent who is responsible for delivering this message to the intended recipient, you are hereby notified that any dissemination, distribution or copying of this communication is strictly prohibited. Senture does not accept liability for changes to this message after it was sent. The views expressed in this e-mail do not necessarily reflect the views of the company. If you have received this communication in error, please notify the sender immediately by replying via e-mail to this message and deleting this information from your computer.”

I’m relatively certain they would want me to post something they did right, but I don’t want to take the risk that because I’ve been identified as a dissenter that they might make an example of me.

The fourth letter was from the customer service manager at DIA, and his was personal and sincere. Since there was no warning on his letter, I will post the contents with the name of the offending officer redacted:

I regret this incident and I thank you for bringing it to my attention. It has been, and remains your option to not use the Advanced Imaging Technology (AIT) scanners, regardless of which technology is in use, and there is no reason necessary. Officer ——‘s comments were uncalled for and I will make sure his manager understands that they were also unwanted, rude, and incorrect in this case. Please understand that we take a report like this seriously and this individual will be dealt with appropriately.

Please feel free to contact me by email or phone at any time.

His email included his contact information. I plan to craft a well-written reply, telling this man about my work in patient advocacy and thanking him for taking me seriously. I don’t want the agent’s job (he could have something going on in his personal life for all I know, and I don’t want to treat him as badly and ignorantly as he treated me), but I do want to suggest that TSA officers be instructed that they aren’t qualified to make health care decisions for passengers.

After all of this drama, two of my friends suggested that I need to do more with this. One told me I needed to blog about it, and the other told me that I really needed to make a website with my patient advocacy information. They were both right. My biggest focus in patient advocacy at the moment is patient rights, and this definitely falls under that scope. There are a lot more rights that patients have when traveling that I didn’t know (like you can bring any size bottle of medication, prescription or not, and you don’t have to have it x-rayed, but you do have to submit it to a visual inspection), and I think it would be very good to put it out there in an easy to access form.

Honestly, I know nothing about designing a web site. I have plenty of content, but I’m not sure how to get it up and arranged. I guess this is something I need to learn. Anyone out there have any suggestions about where I start?

Three Bags Full

Good news – I made it to the Estes Park Wool Market on Saturday. Even better news – I got a fleece and a half (I’m sharing one of them with my friend Julie). I am still in the market for a drum carder to process all that fleece, but I can obtain one outside of the wool market. I needed to get a fleece in person.

The fleece I kept to myself is from a Jacob ewe.

 This one has at least three colors. It’s really soft.

I washed just a handful of the fiber last night so I could see how it will look all finished. Note that the yellowish wool in the top picture becomes this gleaming white wool after it is washed. Some of the discoloration is lanolin, and some of it is dirt. The closeup shot gives you an idea of the crimp in this wool. It’s kind of loose, like maybe a person with curly hair.

 

I am splitting a CVM (California Variegated Mutant) fleece with Julie. These fleeces are stuck together, and they kind of look like the sheep they came from. No worries, there is no skin there, just wool. The sheep are still alive and happy.

I also washed some of this fiber to see what the variegation looks like. Notice the crimp is much tighter than the Jacob wool in the closeup shot of the fiber. Julie tells me this will make a springier yarn. I’m kind of excited to try this out!

I could have gotten goat, alpaca or vicuña fleece as well. There may have been even more options, but there was only so much I could see in one day. I know you’re wondering why I would even consider an alpaca fleece given my allergy, but I have some good news: if I still have the allergy, it is minimal. I had the acupuncturist try to eliminate my alpaca allergy by using some fiber I definitely had a reaction to. When I went to the wool market, I visited the alpaca tent with no problem. I pet a few prepared alpaca rovings with no problem. I even pet a live alpaca and then deliberately rubbed my hand on my nose and face with no discernible reaction! At worst, I had a mild reaction to the fibers (my throat was a little swollen by the end of the day, but that happens randomly sometimes – it wasn’t like my normal throat closing reaction). I am thrilled that this treatment actually worked for me! I will be knitting with alpaca again, but only in small amounts, just in case. I have a little squirreled away for just this sort of occasion.

I had one more adventure worth sharing. After the wool market, Julie and I went to join some other knitters, weavers and spinners for dinner. I was putting my things in the back seat of my car when I had an incident. I dropped a little bag containing my carousel sock and the 2mm double pointed needles on the back seat of my car moments before slipping on some grass. I fell forward into the car seat and managed to stab myself just above the knee with the metal needle. I stood up, and realized it had gone in about an inch. Oddly, it didn’t hurt, but I pulled the needle out (much like someone might pull a dagger out of their chest in a movie) and went in to wash the wound. After I was cleaned up and bandaged, the hole started to hurt some, but not as much as I would expect. As of this morning, it looks and feels no worse than a puncture wound I might have gotten from a cat. Still, this is my first knitting injury in 27 years.

In other news, I spent today photographing the kittens. The shelter gave us tips on how to get better pictures of kittens because they are working harder at advertising the animals they have up for adoption. I like most of these pictures, but I think I can do better on some. I still have a few days.

 Jim  Pam

 Toby  Bernard  Kevin

I’m not as thrilled with the bottom three pictures as I am the top two, so I’ll keep trying. This was just one photo session, after all. Kittens don’t exactly cooperate when you’re trying to photograph them, but these guys did a decent job. It helps to get them when they’re sleepy.

Well, that’s all I’ve got today. I’m reminding myself that this has to be enough.