It’s not a competition

I’m starting to accept that my blog is now going to be a collection of intermittent posts when I have the energy and passion about a subject to discuss it in depth. I finally have one today. This time, I’m feeling pretty touchy about how people treat each other in our society.

Illness, pain, suffering – these are not competitive sports. We treat them like they are, but competition is such a destructive way to treat these subjects. People are always comparing themselves to others, and isolating themselves as the only person who can know what it’s like to suffer in the way that they do.

Isolation and competitive suffering really only lead to bad places. When I developed severe M.E. and there really was no one that I knew who understood me or could have any empathy for me, I felt alone. I felt like I should die. Because that’s what society told me. I got messages from lots of other people about how my situation wasn’t real, I brought it on myself, and if I just didn’t want to be sick anymore, I wouldn’t be. That at least I didn’t have cancer or some other dreadful disease. I was rejected by those around me. Foolishly, I bought into what I was told. I wasn’t ok with myself or my situation until I started to encounter others who have the same illness. Once I realized that this IS real and I’m not just lazy or worthless, well, I was able to find other people who might not be sick like me, but were able to empathize. I wasn’t alone anymore, and just maybe I would be accepted somewhere.

I ran into a situation in the airport this week, and it was enough to make me want to remind people to be careful about what they assume about others. So, I made a PSA on my Facebook page. I expected that people would read the message, take heed or not, and move on with their lives. I didn’t expect to get any comments on the post, and I really didn’t expect people to defend those who judged me. What this tells me is that there is a bigger force than I realized at work here. A societal norm. People close to me think that disrespectful behavior is ok because it’s common. My aim is to change the fact that it’s common and that it’s accepted.

The situation:

I was sitting on a bench by baggage claim, waiting for my husband to grab our checked bags. Due to this very strange symptom in my case of M.E., when I sit upright for long periods of time (such as on a plane or long car trip) my shoulder sort of falls out of the socket. The muscles burn like they’ve been overworked, and I have to have a doctor put my shoulder back in place. I think that the muscles just cannot make or use energy properly, and the weight of my arm is too much for that muscle group. Additionally, because I spent too much time in the polluted indoors of Las Vegas (I truly thought that smoking was not allowed indoors anywhere anymore, but I am clearly mistaken), I had a fibromyalgia flare. Every nerve in my body was on fire. I took that wait time to be by myself, as best you can in a crowded place. I chose to engage myself with messages to my petsitter and from people on Facebook.

Despite my lack of an inviting posture (I buried myself in my phone), and elderly woman tried to make conversation with me. I chose to be polite, because even though I was not well and really didn’t want to interact with anyone, she couldn’t know that. Sure, she was rude to interrupt me, but it’s a minor thing, really. I’m sure she thought I was one of those people who can’t put down the phone. Besides that, sometimes things happen when I’m not in top form to handle them, and I have to deal with them anyway. No reason to punish other people for that.

The elderly woman said to me, “Travel is painful and exhausting.” I smiled weakly and said, “Believe me, I know.” She then spoke to me as a parent speaks to a child, telling me that there was no way that I could know that because I am young. I was put off, because I am sure she saw me as some healthy 20-something who knew nothing of the world, let alone pain and suffering. I am neither healthy nor 20-something (but people tell me all the time that I look like it), and I resented that she would assume something like that by looking at me. I simply smiled and turned back to my phone, disengaging and choosing not to judge her as she did me.

I was prepared to write the encounter off. Some people think that just because they are older, they must know everything. I see often how an adult or elder will speak to a child or younger adult disrespectfully, and when the younger person responds defensively, they wonder why. It’s all about respect – if you want to be respected, be respectful. It works most of the time.

The part that made me want to speak out about it was that in less than 10 minutes time, the same situation happened AGAIN, in a slightly different context. We were in the elevator on the way to the car, when a middle-aged woman with a kid (maybe 8 years old) in tow, made the same comment, that travel is exhausting. I figured that this would be a do-over, a reminder that not everyone is judgmental – but I was wrong! When I gave her the exact same reply as I did to the older woman, this woman looked me up and down and said, “you don’t have children, you couldn’t know.” I disengaged from her as well, because there is no point arguing with someone like that.

I realize from the response on my Facebook page that the reason I take issue with this kind of commentary is not going to be obvious to many, if not most people. I’m going to try to explain it as best I can here, where I have more space.

1. You cannot know a person from a very brief encounter.

The people who engaged me on the subject of pain decided that because I looked a certain way and did not have certain props, there was no way I could know about pain or fatigue. I know without a doubt that had I been using my cane or holding the hand of one of the many children I have traveled with (as an adult equally responsible for their care and well-being, no less), these people would not have judged that I could not have my own struggles. They dismissed the possibility of a hidden illness.

In fact, I found myself being judged by a patient at a patient advocacy seminar I was holding once for what she saw in the moment. She said that I could not understand diabetes and being overweight because I didn’t look overweight at that particular moment. Fortunately, the doctor who was with me in the presentation stood up for me, noting that the patient was seeing me after I had committed to years of treatment, and that I was in fact in that boat not long before (don’t worry, she had my permission to disclose my personal info).

When you judge a person by what you see in front of you right now, you are dismissing volumes of information. What was this person’s life like before this moment? Is this an anomalous situation, or is this the norm for this person? What makes the person in front you tick? Not a one of these questions can be answered in such a brief moment in time.

In the airport situation, I did not presume to know what these other women felt, but they felt free to presume they knew something about me. Just don’t. To quote a friend, “You don’t know my life.” Feel free to speak about your own knowledge and experience, but you cannot know by looking at me or any other person what they have experienced, and what they do or do not know.

2. Pain and suffering are not competitive sports.

This point really bothers me from several different angles. People sometimes tell me about their pain, but quickly follow up with, “but my pain isn’t as bad as yours, so it’s not important” How do you know that? Last I checked, you weren’t in my body. I have a different pain tolerance than you, and pain affects me differently than you. The fact that I’ve had intractable pain for 4 years has no bearing on the fact that you are now in pain as well. If I weren’t in pain, you’d hurt just the same.

The other end of the spectrum is when someone tells me, “Well, at least you can do x. I can’t.” Or there is the ever popular, “You’re too young to know about x.” It seems that some people need to invalidate others in order to validate their own pain. As for the latter statement, illness and pain don’t check your driver’s license before striking.

In all of these cases, it’s comparing the trite apples and oranges. What’s more, invaliding my pain doesn’t lend validity to yours, or vice versa. Everyone’s pain is valid, and everyone’s pain is their own. Age and appearance are completely irrelevant.

3. Isolating yourself isn’t going to improve your situation.

A popular statement I hear from people is that “you are not me and cannot know exactly how I feel.” This is true on a technical level, and it is why I do not presume to know what someone else knows from a brief encounter. I can only speak for myself.

I used to feel that no one can understand me if they aren’t me, end of story. Now, my position is more nuanced. I do not think you should judge another’s choices in regard to how they manage their struggles because you haven’t lived that person’s life and haven’t been faced with their challenges. BUT – this doesn’t mean that you or other people don’t have the experience to empathize and/or offer helpful advice.

For example – everything I do is harder than it should be. Until very recently, I couldn’t read more than a sentence or two at a time without intense concentration. There was no such thing as a good, full night’s sleep. Certain things, like feeding myself, had to be done whether I felt like it or not, and if I didn’t do it, no one else would. I don’t know all the answers for the struggles I encounter, and apparently no one else around me does either, so they can’t help. I am often isolated in my home, my only source of adult, human interaction being Facebook. But you know who else has these experiences? Mothers. Especially single mothers. Maybe they aren’t ill, but they go through similar challenges and have to get through them somehow, just like I do. I’ve made a lot of mom friends who don’t have M.E., but struggle nonetheless. I am not having an unprecedented experience – it may not be identical to anyone else’s, but there are people out there who share some aspects of it. It helps to know these people are on my side. I don’t feel so alone this way.

4. It is disrespectful to dictate to someone else what he or she knows.

This is a rather lengthy point, which is why I saved it for last.

When you tell someone else that they do not know something, it implies you have more authority on the subject than they do. But do you know that? With certainty?

It takes a lot of confidence and knowledge to declare yourself an expert on any subject, but when it is about another person’s life, it takes downright arrogance. When it comes to another person’s life experiences, I promise, no one knows more than the person whose life is in question.

When these women told me about pain and fatigue, they attempted to invalidate my life experiences. To say that I do not understand these subjects is to say that I did not lose a year of my life on the sofa to M.E. It says that I did not pursue treatment after treatment, watching most of them fail, with some having only moderate positive effects at best. It denies the accomplishments I have made in sussing out my allergies and the particular failings in my body. It dismisses the work I’ve done on my own to understand my condition and help others find their own way. It says that I did not consider suicide as a means to end my pain. It says I didn’t even suffer the body wide fire from one of the treatments I tried. It just wipes it all out.

And for what reason?

Because I look young?

Because I don’t look sick?

Because I chose to forgo a prop that would have made my life easier in favor of not attracting unwanted condescension (people talk to you like you have a mental deficiency if you use a chair or cane – I have no idea why)?

No one should have to prove anything to anyone else to be treated respectfully. Yet on a daily basis, we judge, and we punish. We disrespect each other. And when someone finally snaps from that kind of treatment, we blame the victim, failing to find our own faults in the situation.

It’s exhausting to me to act as if I’m not sick, but I do it. I guess I should be flattered when my acting skills fool someone into being unable to consider that I have something else going on behind the scenes, but all I can feel is the judgment. The implication that I am a liar, or perhaps stupid. That’s hardly respectful to imply that to someone else.

I wish it were just me who dealt with this sort of thing, but it isn’t. Not long after I posted my experience, someone spoke to me privately about understanding what it is to feel judged for being “too young” to be in the kind of pain she was in. I can only hope the things I told her helped her feel supported, to know that there is at least one person out there who isn’t judging her.

But if people stopped for one moment to think, to not presume that they know more about the person they are speaking to than that person herself, it would make the world a better place. Please think about this.


What I got for Trying

This year has been trying. I really thought I had something going. I found a new doctor who had new ideas, and we tried some of them. I took drugs to kill the mold living in my gut. I lived with the painful side effects of the mold toxins in my nervous system (when mold dies, it releases mold toxins or “mycotoxins” as a last hurrah). I found some supplements that really helped with the energy issue and my inability to sleep on a normal schedule. I even found one that helped with my food allergies and low blood pressure. I hoped, even allowed myself to believe that I could possibly be on a path to a cure.

I had one amazing week this year. We went to Maui with some friends. Every day of that trip I felt better and better, with the fog clearing from my brain. I was able to get up early every day. I was able to swim long distances to snorkel with very little exertion. It was almost like I wasn’t sick. When I got a serious gluten exposure, the supplements effectively mitigated the worst of the bad effects.

I started to engage in activities like I wasn’t sick. I started working with a physiotherapist on some exercises to stop my back from hurting. I invested more energy into Kitty Mine Crafts because I could. I started making plans to travel to Europe next year. I was finally going to not be sick anymore.

A little bit after my birthday, I saw a friend who had a small, but lingering cold. She told me she wasn’t contagious anymore, because it had been weeks. I laughed, telling her not to underestimate my ability to catch her cold. I thought I was kidding. I really did.

About 48 hours later, I felt like I had a light cold. I worried a bit, but I thought that maybe I had done enough to reset my immune system, to get it acting properly. I took the right vitamins. I rested, because I wanted to give my body its best chance to heal.

After a few days, I wasn’t better. My cold symptoms were gone, but I felt like I did three years ago when I found myself all but confined to my couch for a year. It was a little better this time, because I knew about my soy allergy, so my brain wasn’t on fire. I also have this whole fiber business going on, so I had things I could do from my sofa other than watching television. I made friends with a few video games I had been neglecting in my health. I thought I could overcome this by doing all the right things.

Then days turned into weeks. Weeks turned into two months. I’m better than I was on the first day, but right now, I have pretty firm limits. I thought, though, that my new doctor could help me recover faster. That it wouldn’t have to be a full year, or even another month of this.

When I told him I relapsed, he decided it would be a good opportunity to redo the echo and MRI I had done two years ago. He thought we’d see something because I was freshly into an active stage of the disease. Except it came back like I told him, all clean, save for something called a T2 prolongation in the white matter of my brain. It apparently has grown since it was last noted. All either of us knows about it is that these things can come up after an infection of some sort (autoimmune or viral) has crossed into the brain. It’s associated with migraines, MS, and vascular dementia. But that’s it.

He had me schedule another appointment a month later. When I hadn’t somehow remitted, he told me the most devastating thing he could have. He said that we had reached the limits of his education, and he couldn’t do anything else for me. He said he knew how to remove road blocks to healing, and he thought he had removed all of mine. He said that now it’s about convincing my body to heal, and he doesn’t know how to do that. He said my answers would not come from the medical field, but from diet and nutrition. He told me to comb the alternative disciplines for answers. The bottom line is, he left me out here on my own.

We discussed what I was going to do. I told him that I hadn’t been able to get out of the house for long because I couldn’t walk far or stand in line, and you do a lot of that at Christmas. He offered to do his part to get me a handicap parking permit. I invested in a cane that has a folding seat attached so I can stand in long lines (I find it preferable to a chair, which I don’t really feel I need). I even talked to a friend about coming to work for me as a part time personal assistant. All accommodations I didn’t want to make, but I feel I have to now. Because I can’t count on getting better.

See, at that appointment, a little more of my hope died. I thought if I kept at it, if I kept trying, I could get better. I mean, that’s what so many people say about ME/CFS – that we’re not trying hard enough, and if we did, we would get better. We have to want it. For some unknowable (to me) reason, I let those notions linger in my thoughts. Well, I do want it. And I have tried harder than anyone I know to not be sick. After years of trying, I got better for a week. One amazingly well-timed week. Then I was having trouble recovering from the trip, and then I caught a cold. And then I ended up disabled. I’m not sure these things are unrelated.

If trying got you better, I would be the healthiest person in the world. I watch my diet so carefully. I ask questions and tell people who really have no business knowing that I need them to be careful how they handle my food. I explored new treatments and I endured grueling side effects (seriously, the mycotoxins lit every nerve of my body on fire, and I thought that death would have been a kinder fate). I took medications that wiped out large portions of my days. I take pills all the time to sleep and stay awake at normal hours. I read every label on everything I touch. I do all of this, and I’m not better.

I hate that I’ve caved and started making accommodations for the ME/CFS. The fact that I’ve done this means that I’m accepting this is here for the long term. My doctors are telling me that this is real, and any hope I had of this being a psychosomatic thing I could cure just by wanting it to go away is gone. I’m sick, for real. This is going to be my life. The worst part is, when I give something up temporarily, it seems like I never get it back. Temporary seems to be what I tell myself to get through the transition from being able to do something myself to losing that ability.

I know that this sounds pretty dark. It is pretty dark. I’m mourning a loss. Along with my hope, the person I was going to be died. The person who is here now is different – not necessarily worse, and possibly even better. The future I was envisioning with world travel and a big important career is gone. The new future is not what the person I was wanted. I’m going to try to make it what the new person I am will want, though.

I only have vague notions of what my future is going to have in it. Several of my doctors have asked if I would please consider medical school, given that I have the intelligence and life experience that could really change other people’s life. I have to get to a certain point in healing before I can do that, though. I can’t read for long anymore. I can barely write without breaking it into several short sessions because the required focus wears me out. My memory is good long-term, but the short term memory is nothing short of terrible. I forget sentences I uttered just moments before. These are not conducive to intense study.

I’m not sure about how travel will go. I can’t enjoy Europe as I am right now. I can’t walk far, and getting the gear I need that far across the world would be hard. And let’s not forget the flight – the security procedures have become so terrible for me that the last time I flew, I completely broke down emotionally. The seats themselves generate pain on short flights. I’d be debilitated by the time I landed on a longer flight. I know I can fly within the US, but I think I’m going to have to cut back again. And I still can’t travel during the holiday and flu season.

I think I’m going to keep up with my wool business. I like that work, and it’s something I can do when I can’t be up for long stretches. And I made some great friends that way – I think that there are more friends out there that I just haven’t met yet.

I have a feeling that fostering will become an even smaller part of my life. I mean, with a personal assistant to help me, it should be more manageable, but I don’t know how I’ll manage to put my personal touch on the kittens if I am less involved.

So, yeah, that’s where I am. A lot sicker and quite lost. I haven’t given up entirely, but it’s an attractive option. Until then, I’ll keep trying.

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.

Running a Business by Trial and Error

Because I had another improvement in my health since starting the new treatment, I decided I could put some effort into making Kitty Mine Crafts grow. I think my search engine optimization is decent, because people do find me, but I think I suck at advertising. I tried advertising by using Ravelry first, then by using search ads on Etsy. I didn’t feel like I had a whole lot of success with the Ravelry advertising. I got maybe a 1% click rate on my ads, and that tells me that either they aren’t good ads or that the ad placement wasn’t good (or maybe I have expectations that are too high). I think the problem was that my ads aren’t good enough – Ravelry is a place where knitters and spinners gather, and I make products for those people in particular. These are some of the ads I made (the others won’t display in my browser – they worked just fine on Ravelry, though, and got the same number of views each):

 KMC Yarn Ad2 KMC Batt Ad

The ads rotated throughout the notebook section of Ravelry. I designed them myself – I’m no expert at graphic design, but I’m also not a professional photographer and my shop photos seem to work out. I might try to figure out what went wrong and redesign the ads.

I read both positive and negative things about Etsy’s search ads, so I thought I’d try them for myself. At first, it worked well – I got sales right away. I think that it had an effect on me like gambling has on some people (early payoff makes me unrealistically expect more payoff in the future if I just wait long enough), and I stopped getting sales from the ads but kept them running too long. Now I’ve spent more on advertising than I made in sales.

I realized that I need to learn how to more effectively use what advertising I have, both the free stuff and the paid stuff. Someone had great advice about how to make the ads more effective on one of the Etsy forums – choose a few items with “clickable” photos and only advertise those. It doesn’t mean that your other items aren’t good, it’s just that some pictures make people want to click more than others do. Fair enough – that’s what I’m trying now. I just started this approach a few days ago, so I’m still tweaking my selection.

In the meantime, I’ve gotten more foster kittens.

8 - wandering

I thought that since my business is called “Kitty Mine Crafts”, and I do sell a few cat toys,  that it would make sense to post pictures of the fuzzy babies on my Facebook and Twitter pages. This would serve two purposes: 1. It gets the foster kittens some exposure, so that maybe someone will fall in love and want to adopt them, and 2. Kittens are cute and will make some people come to my page just to see them, and maybe they’ll see some yarn or wool that they like, too (there’s a huge overlap in the knitter/spinner and kitten lover communities). The kittens seemed to have at least expanded my Facebook membership. Maybe the Twitter membership as well. I’ll call that a win.

I’m also trying to develop some unique products that I can repeat. I’ve developed these batts that I call Opalescent Batts (they will be available next week):

Opalescent batts

I can repeat these because the wool is commercially dyed, so I can get the same colorways again and again. The great thing about a listing like this is that I only have to take photos once, because all of the subsequent batts will look exactly like the first ones. I spend far more time photographing, editing photos, and listing items on Etsy than I ever do in making them. Most of my other rovings and batts are one of a kind, so I have to put in a massive amount of work every time. This should make my process more efficient.

I’m also going to try to repeat roving colorways that sold quickly. If they’ve sold once, maybe they’ll be good again, right? I’ve also learned to dye more than one item for each listing of “limited” items. Again, more products for almost the same amount of work.

I feel like I’ve done a good job so far, given that I haven’t had a single formal business lesson in my life. I’ve been open for eight months and have sold a total of one hundred and eighty items to over a hundred people. I know the first year (or more) of a new business is harder, that it takes time to grow a client base. Despite all that, I get frustrated that I will get sales every day for a couple of weeks, then none for long stretches of time. I see other Etsy people/businesses posting things they make on their Facebook pages and people want them so badly that they sell out before ever having to list them on Etsy. I need to figure out how to make that happen.

I also hope to be able to attend craft fairs some day. Right now, I am so small that the cost of renting a booth is prohibitive. I also worry that, because I sell a niche item, there really won’t be an audience for my wares at the local craft shows. If I could get a booth at a wool market or other specifically knitting/spinning themed gathering, I’d have a shot, but it’s really expensive. The Estes Park Wool Market, for example, costs $350 for the weekend. I’m just not that big yet – I can’t be sure I’ll make that back in sales. I’m also not healthy enough to put in those hours. I think the by the second day (and quite possibly half way through the first) I’d be half dead. I could hire someone to cover for me, but that just adds to the costs that I already find to be too steep.

With all this talk of wanting to grow, I should add that I also need to figure out just how big I want to be. Right now, I run my business from my home. When the ME/CFS  tells me I can’t work, that’s ok. If I get too big, I’ll need to consider a studio, maybe even a brick and mortar store. I’d have to have employees, and I’d have to have regular, predictable hours. This is just not something that I can do right now. Also, I travel a lot. If I get too big, I’d have to either stop traveling or deal with a giant backlog of orders while I am out. I get anxiety when I get orders while I’m gone. I always check to make sure buyers have gotten my message that I will ship upon my return, but almost none of them read the shop announcement or the automatic email in which I point this out and give them the opportunity to cancel the order if they just can’t wait. I fear that one day someone will leave me bad feedback about being slow because they didn’t read my messages. I have too many items in my shop now to edit each listing with this information. I don’t want to put my shop on vacation while I’m gone because people aren’t seeing what I have to offer, and I keep reading nightmare stories about people who have done exactly that and lost all the progress they’d previously made getting found (and no one can buy your items if they can’t find them). The solution I want to try for my next trip is to deactivate all but a manageable number of my listings and put a note about my travel dates right at the top of the few active listings.

So, you can see that any success I’ve had in my business is not pure luck – it has taken some exhausting work. I’ve had to set limits on the time I put into this (and I’m getting better, but not great, about enforcing them) because I work too hard. The process is constantly about learning and adapting to the sales environment. Speaking of, I’m off to learn some more about how to make my shop successful.


I find myself constantly having to change and adapt in life. I cannot accurately predict how my life is going to be in a few months from now, despite how much I hope otherwise. I’m trying to plan a vacation for later this year, but I don’t know exactly how to plan it because I don’t know what I’ll be up for. Can I go hiking and do active things, or is lying on a beach all I can handle? What about pre-planning events that aren’t really fatigue-mitigated (like dinner and a show that I’ll need reservations for well in advance) – how many can I plan? How many days have to be completely unplanned so I can survive the trip? I sincerely wish I knew the answers to these questions so that I can count on doing things and not be disappointed that I can’t manage something I was really looking forward to.

It’s a little easier in a shorter time frame. If I feel like poo today, I can generally predict that tomorrow I’ll feel the same plus or minus a few points. That is, unless there is a huge change in weather. At this time of year, we have s’winter in Colorado. One day it will be 75 degrees, and the next morning you’ll wake up to a blanket of snow. I can tell before I get out of bed if we’ve had a surprise snow storm because I feel… oddly oppressed. I feel like I am made of lead and it’s hard to move. I’m more tired than usual. I sleep later. It’s frustrating.

I started a new treatment some time in February. My current doctor, Dr M, thinks that I might have a problem with mold. We started to treat me empirically (experimentally) with amphotericin. This drug kills systemic fungal infections. The catch is, when mold dies, it releases mycotoxins (mold toxins), so I have to take it with another drug, cholestyramine to bind those toxins and push them out of my body. And there’s a catch with that drug, too – it was a precursor to statins, so it is designed to reduce your cholesterol. That would be fine if mine were high, but it isn’t – it’s too low. So, this can lead to dangerous side effects (I actually want to talk more about this a  little later).

The first few days of this treatment were horrible. As predicted, I had some dramatic worsening of the CFS/ME symptoms I always live with. I was only able to tolerate one dose of the amphotericin twice a week. The goal was to get to two doses every day and stay that way for sixty days. I also had to plan the increases in my medication around our ridiculous travel schedule. Not only did I want to be able to function when I travel somewhere, but it is a NIGHTMARE to get refrigerated medication through airport security. You have to have either ice that hasn’t melted at all (tough to do when it takes 45 minutes to get to the airport), or an ice pack that seems solid when you get there. And then there’s the issue of scanning the medication in the x-ray machine. You can ask that the medication be visually inspected, but that takes a lot of extra time and I really don’t enjoy the fact that some of the tsa officers roll their eyes at that sort of request. I have already been mocked by the tsa for my choice not to go through the full-body scanners.

After my last trip to San Francisco, Chicago and Minnesota (in the same week), I started taking the two-a-day dose of amphotericin. I just wanted to get serious and tough out whatever I had to in order to make this process go faster. By Tuesday of that week, I felt I had pushed it too far. A side effect of the treatment (there are arguments for it being from the mycotoxins or from the cholestyramine-induced low cholesterol) is that I have severe memory problems. On that day, I took a pill that scrambled my brain. I literally walked in a circle for ten full minutes because I couldn’t remember what I was looking for or where I was going to look for it. Turns out, I was looking for my car keys. I found them, got into my car, and went grocery shopping. It wasn’t until I got home that I realized what had happened, and that my judgment had gone out the window. I thought maybe I had forgotten that I had already taken a pill and accidentally overdosed, so I didn’t take a second one that day.

Wednesday, I started making notes about when I had taken a pill. I took the first one that day, and felt crappy like I expected. I took a second at the end of the day, and oh how I wished I hadn’t. Every muscle, every joint in my body was on fire. My brain burned. My stomach hurt. I took all kinds of anti-inflammatory herbs and medications. I ran a warm bath. I thought I was going to die. I wasn’t sure I could take one more day of this.

Thursday morning I woke up and took another pill… and nothing too bad happened. I took the second dose later that night, and still no major ill effects. I haven’t had any major ill effects until the middle of last week.

I still have the memory problem. I have to write down or photograph everything so I can remember. I have some new problems that aren’t severe yet, but I suspect that they have the potential to be. I wake up in a different sort of pain after bowling now – I feel this burning in my neck and shoulders much like what happened in the beginning when the muscles in my right shoulder just dissolved. I’m pretty certain this is textbook rhabdomyolysis, a side effect associated with cholesterol lowering medications. This paragraph makes very little sense after reading the previous one, I know. But from my perspective, things that seem serious to other people are just par for the course. It’s worth it to me if it is short term and will lead to a better outcome in the long haul.

Dr M has been very cooperative and sympathetic to my concerns with this treatment plan. I asked if we could monitor liver/kidney/metabolic function while I am being treated, even though it probably seemed paranoid. He was fine with it, especially because I had concerns and a past history of low cholesterol.

I’m glad he did look, because not a month into the treatment, I had a cholesterol level of 124. Before you start thinking, “What’s she so worried about, that’s a great number?”, there’s something you should know. For at least my entire lifetime, all I’ve heard is that high cholesterol raises your risk of heart disease, and to combat that you need to eat less fat and more carbs. Except, all of that is wrong. There is an entire book about this called, The Great Cholesterol Myth. The authors explain in this book how blaming cholesterol for heart disease is like blaming firemen for fires. If you don’t want to read an entire book, just read this article. All of these doctors agree that total cholesterol of 150 is too low, and that even 200 (the current maximum recommendation) is the lower limit of what is healthy. I’m already below that. At the level I’m at, I’m at risk for memory loss, decreased immune function, nerve damage, depression, suicide, etc. I already have some of these problems.

I’ve been eating a very high fat diet to counteract this. The catch is, diet only affects your cholesterol levels minimally. Moreover, people who eat a high fat diet tend to have lower blood cholesterol levels. I know, it’s a shock. I’ll just give you a moment to let that sink in.

Ready for some more? I eat eggs for breakfast every morning. I have been doing this for at least three years. I eat a lot of fatty meat. I eat some nuts (a lot of almonds and almond flour). I even eat about a tablespoon of coconut oil straight up every day, and I still have low cholesterol.

Dr M offered me a retest when I was in his office last week. I declined, thinking I’d wait until next month, but with the level of muscle pain I’m experiencing, I am thinking maybe I should ask him to order the test sooner. I have started waking up later every day. My brain is not on fire anymore, at least, but I do suffer cognitive impairment. Sometimes I can’t make simple decisions – I feel like a child, unable to comprehend the world around me. I cannot handle interruption, no matter how minor, to the activities I engage in. Plus a few other things that I won’t go into here.

Bottom line is, I have to adapt. I might not be able to take the treatment as aggressively as I would like (I am so ready to not be sick anymore). I might have to be tested more. I might have to quit even more activities. But somehow, I’ll make it work.

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.

A Step Forward

I think I’ve hit that sweet spot today where I don’t have enough energy to engage in hard core work, but I have just enough energy to blog. This is good, because I’ve wanted to do this for some time now.

Let’s lead with the good news – Dr M has managed to help me affect one of the biggest problems that has been plaguing me for at least twenty years! Normally my sleep schedule goes around the clock in a cycle so rare that it almost exclusively occurs in blind people. Over the Christmas holidays when my brother and his family came to visit, I was able to wake up naturally between 6-8am every day. This is huge!! It’s something I’ve wanted to be true for many, many years.

I am not entirely sure what started this effect, but I know that I have to take melatonin (a sublingual form – this matters a lot) every night to keep it happening. If I skip, I can’t fall asleep. The melatonin wasn’t working much at first – it helped the sleep I did get to be more restful, but it didn’t help me fall asleep. Now, it also helps me get to sleep. All I can tell you is that I was taking a supplement regimen not unlike the ones that Dr B had me on a few years ago, but it kept making my head burn like soy does and it sapped all of my energy. I stopped taking the supplements one by one, and when I stopped entirely, my sleep schedule snapped into a normal cycle for weeks on end! I couldn’t believe it! The only catch (and there always is one) is that I traded poor quality and poorly timed sleep for constant pain that ranges from moderate to blinding.

Given that I had this fortuitous turn of events, I was able to have a really great Christmas with my brother and his family. We went to the candy factory, the tea factory, yarn shops, Julie’s house… I mean, we really got out and around. I missed out on a couple of events, but in part it had to do with other scheduling issues. I was glad for the breaks when I got them, but I was ok. And I didn’t even have to resort to pseudoephedrine except on the first day they were here (and I hadn’t quite quit all the supplements).

I had two bad days since they left, and I think those were about low potassium. I woke up on both of those days unable to move (kind of a hard feeling to describe, but my blood felt like molasses and I couldn’t quite wake up, like I was drugged), so I slept till noon. Today was rough, too, but I expected it. I decided over the weekend that it was really not working for me to have parts of my business on three levels of the house. I do the actual work on the main level, but my supplies and stock lived in the basement. My computer (where I edit photos and put up listings) lived upstairs. Discounting the efficiency issue, I realized I just couldn’t take that many stairs in a day. I had to leave things out overnight or longer, and it really bothered me. So, Michael and I switched offices.

Part of switching offices meant that I had to get new furniture to store my stock and raw materials. The cats LOVE my wool. I’ve even caught Duck sleeping in the basket I keep current spinning projects in. I can’t blame him – I’d want to sleep in a box of wool if I could as well. I can’t have cats appropriating my products for their own use, so the wool has to be behind closed doors. This meant a trip to Ikea (by myself – a huge mistake, given that two of the boxes were 56 pounds each) and furniture assembly. I only got one wool cabinet assembled before I was absolutely too fatigued to do one more thing. Overdoing it yesterday meant that today would be pretty unproductive. I did a little dying (just one load of wool and sock yarn for a project I’m making for a friend) and I spent the day on the computer, but mostly not working. I also watched tv and knit on a pair of socks I’m making for Michael. Also, I slept in till 9:00 this morning. 😦

I managed to get a few good shots from my visit with the family. This is me teaching Alexis to dye:

Alexis Dye1Alexis Dye2Alexis Dye3

And these are the rovings she made. I’m planning to give her some of the profits from the sales. Alexis did the work after all, and I think this would be a great learning experience for her!

These are some shots of the kids decorating the tree:

Christmas 2012 a Christmas 2012 b Christmas 2012 c Christmas 2012 d Christmas 2012 e Christmas 2012 f Christmas 2012 g Christmas 2012 h Christmas 2012

And a few of Christmas itself!

presents 2012 presents 2012a presents 2012b presents 2012c presents 2012d presents 2012e

In everyone’s defense, it was 5:00 in the morning when these pictures were taken. If we look a little ragged, well, that’s why. We all had naps and looked like movie stars later. Or at least, I’m pretending that’s what’s true (I look how I look – if you don’t like it, you don’t have to look at it).

Finally, I have a few shots of the kids helping me make a custom order for Kitty Mine Crafts (I think you’ll find this familiar, Sara!) They loved working with the drum carder (but we made it clear this was a supervision only activity – the teeth on the licker are sharp!!!).

drumcarder kids drumcarder kids2

One last thing – while they were here, my sister-in-law wanted to learn more about how to shop and prepare food when you live gluten-free. They are trying to make the transition, and since I have to live that way, they got to see what I do to get by. I also introduced them to some recipes (most of which were well received by the adults) that they are planning to use at home. I promised Alicia that I would publish a recipe for a pot roast I made earlier this week, so here it is:

Ingredients –

  • approximately 4lbs chuck roast
  • 1 box Imagine Organic vegetable stock
  • 1/4 bottle of red wine (I used the leftover Ravenswood Old Vine Zinfandel)
  • 1 tsp garlic salt and parsley mixed
  • 3 celery stalks, chopped into bite-sized pieces
  • Two fistfulls of baby carrots

Instructions –

  1. In a large pot, pour in some olive oil (lightly cover the bottom of the pot) and brown the roast on all sides.
  2. Put the stock, wine, and garlic salt in the slow cooker. Set the heat to low.
  3. Add the meat.
  4. Let cook 4 hours, then add the celery.
  5. Let cook 2 more hours, then add carrots.
  6. Let cook at least another hour, then serve (you can leave it in for another two hours if you want).

The meat was fall-apart soft when we ate it. Also, I made this from whatever I could find in my pantry and kitchen. I recommend that you use some sort of aromatic (onions and the like) if you don’t have celery, and most root veggies can be substituted for the carrots to different effect. I don’t recommend potatoes if you’re trying to keep your glycemic index low, but to each his own. What I will say to everyone is that my sister-in-law announced that she lost 5 pounds over the holidays eating like I do. Yes – lost, not gained. Over the holidays. And she’s keeping it off. I’m proud of her!

That’s all for now. I hope to write again soon!