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.

How to be Friends with Someone Who is Chronically Ill

edits: 10/28 – I made a few edits based on feedback. Original stuff has a strikethru, new stuff next to it.

I want to start this post with a disclaimer – a lot of my friends are going to see themselves in this post, but this isn’t actually about you. It stemmed from a conversation I had with my husband, and this is about me. Also, in order to illustrate how serious this is, I am going to tell you a very raw and somewhat graphic personal story. Brace yourself.

Let me be blunt – having a chronic illness is HARD. There absolutely is a subset of people who are maladaptive, who play it up, who don’t want to get better because they are attached to a sickness identity, but they are in the minority and harm medical and public opinion of the rest of us who are sick but truly do want to get better. I’m not asking you to indulge that subset of people, but I’m also going to tell you that sometimes, it can be hard to tell us apart. We all have different experiences, and the same disease can be harder for one sufferer than the next for reasons like variations in symptoms, symptom intensity, and response to (and availability of) treatments. If you’re the bible reading sort, refer to Matthew 7:1, “Judge not, that ye be not judged.”

I’ve realized that not a lot of people know what to do with a person who is always sick. Friends go through phases, generally starting out as very supportive, thinking they can help their friend through the crisis. The next phase involves the friend thinking that the sick person can’t possibly still be sick, and that maybe the problem is psychological (I have been told, “you would feel better if you just got out more.” or “if you just took this pill <an antidepressant>, you’d feel better.”). Even if the friend doesn’t fall into the second phase, they almost all move on to the abandonment phase – they just stop calling. It’s exhausting dealing with someone who is always sick, and I can’t really fault an outsider for this. Why suffer if you don’t have to, right?

I’m going to make a set of bullet points, with no particular order of importance of what you can do to be a better friend to someone with a chronic, isolating illness. I can only speak for people with ME/CFS, autoimmune disease and dietary restrictions, as those are the things that I live with. I also can’t speak for all of us, as there are people who have a different perspective than I do. I would urge you to have an honest conversation with each person you know with a chronic illness and find out his/her preferences, and take those people at their word. This is my personal position on each subject, but you can always ask the chronically ill person in your life how he/she feels about each point.

  • Call me. Don’t worry that you might wake me up, or that I might not want to talk to you. I don’t have to answer the phone when it rings, and even my cell phone has an option to reject an incoming call and send it to voicemail. I am alone. A lot. Part of keeping me sane is having social contact. And call when you say you will. I wait by the phone for your call like a teenaged girl hoping to get invited to the prom, and am just as disappointed when your call never comes.
  • Invite me to hang out. Again, don’t assume that I wouldn’t want to do whatever it is you have in mind. I have enough people and a chronic illness taking choices away from me. I have doctors saying “You can’t do that anymore,” or “You need to start doing this.” Some days my body says, “I don’t care how much you were looking forward to doing what you had planned today, I’m not letting you out of bed.” Offer me the choice – don’t assume you know what I need or how much I can handle. Again, human contact is important.
  • Keep asking despite the fact that I have to turn you down. My husband informed me that if I told him more than a few times in a row that I didn’t feel up to doing something, he just stopped asking because he felt rejected like it was adding stress to my life. Part of the problem was timing – he would ask when I was clearly overwhelmed if I wanted to add one more HUGE thing to my schedule. I am comfortable saying, “no” when I have to, and if he had asked me to do things when I was clearly not overwhelmed I would have said, “yes.” I may only be able to say “yes” one out of ten times, but that one time I can do something is important to me. The invitation alone is important to me, so that I know you want to be with me. You just have to be flexible with the timing. I’m not rejecting you, I just have limits.
  • Don’t try to convince me “a little bit isn’t going to hurt you.” I didn’t choose my food and activity restrictions, and I would love to eat and do things that are just not a good idea. The problem is, you don’t have to pay the price for my mistakes. If I eat bread, it rips up my stomach and I lose at least one entire day of my life. If I eat soy, my face goes numb, my brain lights on fire, and I can’t think. If I exercise too much, my body shuts down, as it just doesn’t have the energy stored to pay for it. I know my limits. Please respect that I do, and I’m not just trying to inconvenience you.
  • Ask me how I feel today, don’t just assume you can tell by looking. For many reasons, I try not to complain too much about what’s wrong with me. My chiropractor found me out because when I have done too much and say I’m fine, my body betrays my story and requires more adjustment. He then gives me the lecture about how he knows I don’t do anything half way, but maybe I need to figure out how (I told you, I get plenty of instruction about what I can and can’t do). I often look just fine when every muscle in my body or my brain is on fire, but sometimes I have dark circles under my eyes when I feel just fine.

edit: My husband points out that I’m going to downplay how bad off I am. That may be true, but the answer to, “Do you want to talk/hang out with me?” is always truthful. I sometimes go out when I feel bad because I need you more than the rest.

  • Overall, don’t forget about me. I know you have a busy life. I know you have kids, a job, social engagements. I don’t, because of my illness. I have doctors appointments. I’ve found that I can call some of my friends, leave them messages on Facebook or on voicemail, or try every way I know how to contact them, but they don’t get back to me for weeks or even months. I’m just not a priority. I get that, but I need to know I’m still valuable to you. Send me a text message saying that you miss me. Call me and tell me you only had five minutes, but you just wanted to know that I’m still here and that I’m ok. Make sure I know that you know I exist!

I actually want to address that final point in great detail. The thing is, people who get ME/CFS tend to be people who used to be very active, who used to be involved in a lot – that’s why this disease was given the derogatory name, “yuppie flu.” We are high achievers, and this disease takes all of that away from us. We didn’t just decide we didn’t want to compete and fake an illness to get out of the rat race – on the contrary, I thought this was no big deal and tried to figure out how to stay in the working world. This “high achiever” thing actually has a point, at least in my world, and I’m betting in others’ world as well. You see, I get my entire sense of self worth from what I do. With this disease, I feel completely worthless. (This is the part where I tell the raw, graphic story).

I, like many other ME/CFS sufferers, had a very rough upbringing. There are some people who aren’t going to like that I am telling this story, but I wouldn’t have it to tell if the people involved hadn’t behaved the way they did. You see, I was cruelly abandoned by both of my parents. I am not talking about not seeing eye-to-eye with these people and having a falling out, I am talking total obliteration of the most primal bond that people experience. My father informed me, when I was maybe 14 years old, that if he had to choose between me and his girlfriend (a choice she asked him to make, not me), he would choose her. He said it was my fault she didn’t want to be with him. They got married shortly thereafter, and are now divorced. My mother left me not once, but twice. The first time was when she was escaping my abusive father – she left all of her children behind and saved herself, starting a new family and naming her new children after the old ones (middle names). The second time was after my father kicked me out and sent me to live with her. I had just turned 16, and my mother found it difficult to cope with the fact that I was back in her life. She had me locked away in a mental institution for a few days, but when they evaluated me they told us the problem wasn’t me, it was her. She then told them, “I don’t want her anymore – she reminds me of her father.” She moved and left me with another family under the guise of “letting me finish the school year”, and never even called to see how I was. I haven’t seen her since.

I watch a lot of Dr Phil these days, and I keep hearing him say something to parents “You are writing on the slate of who your children are. What you do and say to the affects them deeply, and children have a way of thinking that everything is their fault.” He’s right, but I didn’t just make that assumption – my parents told me it was so. I don’t care if they said these things in fear or anger or just plain stupidity, they said them to a little girl who was forming her sense of place in this world. This isn’t something you just “get over.” This is something that affects the rest of your life.

I spend my time thinking things like, “If I wasn’t good enough for my parents, how could anyone else want me?” I am terrified of making people feel like I am asking too much of them, so generally I don’t tell them what I need for fear that they, too, will reject me. I don’t tell people how bad off I am because I don’t want them to abandon me because I complain too much. I suffer in silence (until right now) because some people judge me harshly when I say anything at all. I only tell the world maybe 10% of what I deal with, lest they think me a whiner. I wait until my husband goes to bed at night, turn the tv to something I don’t have to think a lot about, and cry for hours on many, many nights.

I came pretty close to committing suicide once. No one, not even my therapist knew I was going to do it, because I didn’t want anyone to stop me. I had a solid plan, the opportunity presented itself, and no one would have known until the deed was done because no one was connected enough to my situation to know how much I was suffering. Well, there was one person. Dr B made it clear months before, when he thought I was giving up, when he thought I might be suicidal, that it was not ok with him if I ended my life. We had a fight about it. But it was only the knowledge that it would wreck his life if I ended mine (brand new doctor loses a patient… yeah, not cool) that made me look one more time for the answer to what was wrong with me. I didn’t tell him, or anyone else what I was planning to do, but I was hours away from letting my husband, or a cop, or my cat sitter find my body floating in a bathtub full of blood.

I don’t want anyone to think I’m there anymore. I have figured out ways to have regular contact with the outside world (although Facebook seems to be taking some of that away). I have a sense of self-worth through my shop (more than getting paid for my work, I feel good when people simply “like” my work or feature it). A few of my friends have come to understand what I was talking about in this post and they DO make a point to tell me that it’s ok with them that I take up space in this world… but I still struggle. Every day. Some more than others. And no, I don’t tell you about it. I don’t want you to leave me, too.

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!

As Good as I Hoped… Almost

The last couple of weeks have been eventful, and almost everything has been going as well (or even better) than I hoped. My shop is exactly where I wanted it to be much faster than I expected. This week I have gotten sales on most days. I thought I was going to reach fifty items in my inventory for sale, but things are going slightly faster than I can replace them. This is fine. I don’t need the inventory, I was trying to drive business. There is a minimum number of listings that makes the shop appealing to buyers – they get drawn in by a listing, then look around to see if there is something they like better or want to add to the item that drew them in. If there isn’t enough, they leave or just buy the one thing. When there are more listings, there are more purchases. I thought the magic number was going to be one hundred, but it seems the number is actually forty-six (but I wish it were forty-two).

I realized that I needed to add more inventory in a hurry, so on Wednesday this week I dyed a bunch of new rovings (the first one isn’t listed yet)…

..and then I had a dying accident. That pumpkin orange you see on the right was going to be a first attempt at the candy corn color in the middle. I mix the dyes in a glass jar because if I pour boiling water in a plastic bottle, the bottle melts. I can use a warm dye, but I can’t move it to the squeeze bottle until it cools nearly all the way. In any case, I had my rubber gloves on and was carrying the jar of dye over to the undyed roving, when the jar slipped and broke. Plenty of the dye went into the roving, so I just went with that. Plenty more got on my countertop (fortunately, it’s a silestone counter and the dye comes out with Dawn, vinegar, and a long scrub with a magic eraser), a fair amount ended up in the utensil drawers in my kitchen island, and a little ended up on the floor. I also splashed some onto my dish towel, so I tried (and failed) to even out the color. The worst is that my tennis shoes are partly orange as well. 😦

I’ve made it my policy to limit my listings to one new item per day. There is a really good reason for this. If I list or relist something daily, it helps my visibility. I do not like the idea of paying another listing fee for something that doesn’t need it, so I just stick to new listings as often as possible. I can only work so much before I am exhausted (and not at all on Tuesdays when I have acupuncture, massage and bowling – too many scheduled events leave me overwhelmed). The photography and listing are very time consuming, and I like to have some photographed items ready for days when I really just can’t put in much effort at all. The problem is, I really don’t like to have a list of things that need to be done. I learned in college what it felt like to not procrastinate, and man, the feeling was so good that I have given up the sport of procrastination entirely. Well, almost entirely. In this case, it’s better not to just get it all done at once.

Health has actually factored in to my work lately. I have known for the last nine years that if I work too many hours (what constitutes too many varies from day to day), I pay for it inordinately. I try to limit myself, but I really like working, especially at this job. I put in nineteen hours a day the first few days, then maybe twelve hours the rest of the first few weeks, then eight from then on. The work was huge at first because I had to set up a Facebook page, create a Twitter account, make a Ravelry group, become on official yarn brand and shop on Ravelry, and read and implement what I learned about marketing and Search Engine Optimization (SEO).

I started to feel the impact of my activity pretty quickly. The first few days were ok, but the ME/CFS often has a delayed onset – I do something today and pay for it a few days later. I get tired, and the fibromyalgia pain acts up. I think what really happens is that stress hormones over-activate my nervous system, and then all the bad things come up. I started having more problems with my POTS, becoming breathless when simply standing up. I was also having insomnia and nightmares (from adrenaline surges at night) – first the scary vampires-chasing-me kind, then the soul crushing defeat that leaves me waking up in tears kind. This is the heart of what took me out when I got sick two and half years ago (can you believe it’s been that long? and also that short?).

The disabling fatigue is actually easier to handle this time, for many reasons. The most important reason, as far as I’m concerned, is that I am not also dealing with the brain-burn from the undetected soy and estrogen sensitivity I had the first time. The brain-burn can take me out on its own, and with the post-exertional malaise, well, it’s catastrophic. Another reason I’m finding it easier is that Dr B has an idea of what might have led to it. You see, I did another gallbladder cleanse a couple of weeks ago. I was gaining weight even though I had not changed my diet (about fifteen pounds in 3 months). Dr B thought I might have been holding on to hormones, so I took calcium d-glucarate to help my liver process them out. Well, it stopped the weight gain, but didn’t really lead to the weight going back to where it was. Through some testing, we learned that my gallbladder/biliary pathways are under-functioning, so the cleanse was supposed to clean it out and help it start over. For the week after the cleanse, I was rapidly losing weight (a pound a day). This is exactly what happened before I fell off a cliff those years ago. Dr B’s theory is that the hormones that I was storing as fat became water soluble from the cleanse, and that I was reabsorbing toxic hormones that were, in effect, poisoning me. I think he’s right. I am still taking the calcium d-glucarate to support hormone detox, but there isn’t much I can do about the toxic dose of whatever was stored in my fat cells. Just wait it out, I guess. What’s good is that I have a very viable answer, and this gives me hope that I can heal some and that I can prevent this level of function loss in the future.

Now don’t mistake me – I will never be cured. I’m always going to be prone to developing these symptoms if I overdo it or lose weight too quickly. But I know so much more about exactly what’s wrong and how to minimize the impact of the ME/CFS on my life than I did when this first happened, and more than I did even when I finally found the diagnosis a year and a half ago. I’m still not going to realistically be able to work in a full-time job outside of the home. But this is the dream, isn’t it? To work for yourself in a job that you love, when you want and how you want? It’s almost what I hoped for in my life. I could live without the chronic illness, but I can’t have everything.

Getting Busy

There’s been yet another drastic change in my world since my last post. Who am I kidding – there have been A LOT of drastic changes in my world since the last post. I’ll break them down by category.

Health:

Ever since March, I’ve been gaining weight. It’s been happening despite a lack of change in my diet or activity level. As I gained weight, I started to feel more and more exhausted and my ability to focus just kept diminishing. I gained about fifteen pounds all told, which put me back to where I was before I started to see Dr B. I started to feel defeated – I know that ME/CFS has a relapse/remission cycle, but every time I go into a relapse, it feels like someone has yanked on my short leash, bringing me to my knees.

During one of my weekly talks with Dr B, he suggested that maybe I was gaining weight because I was holding on to hormones. We tried an effort to force my biliary systems (liver, gallbladder) to work harder (hormones are detoxified using, amongst other things, bile). I learned then that I actually have a very hard time digesting proteins. I ate nuts, and they would come back out completely undigested. This suggests a shortage of bile or liver or gall bladder dysfunction. I am aware that Yaz, a birth control pill I used to take, causes a sludge to build up in the gall bladder, and sometimes it gives people gall stones. There are lawsuits about this, but I can’t prove it was the Yaz, and I don’t have actual stones (the sludge is not visible on the ultrasound – they only see it if they take out your gall bladder), so I’m not sure I can be included.

I tried a gall bladder cleanse next. The idea is to let bile build up in the gall bladder, then force the contents out all at once, with the pressure forcing out any stones or sludge. The short version of that story is, it didn’t work. At one point during the cleanse, you’re supposed to drink a mixture of 1/2c olive oil and 1/2c grapefruit juice (it tastes way better than I would have guessed – if it were mixed with a little vodka it would have been a decent cocktail). Well, rather than getting digested, the olive oil came out in the exact same form it went in.

Armed with the knowledge that I have a problem with detoxification, I looked for something that might help me. I remembered that when I went for non-cognitive biofeedback, H said to ask my doctors about Calcium D-Glucarate. It’s supposed to aid the detoxification pathways for steroid hormones (like cortisol and estrogen). None of them knew anything about it, so I just discarded the idea.

I shouldn’t have.

I started taking the Calcium D- Glucarate a few weeks ago, and I’ve been feeling A LOT better. It was a slow process, but by the next morning after starting this new supplement my brain fog started clearing and I started losing weight. The weight loss has continued, and I’m down about five pounds now. I never in the whole time changed my diet or my exercise level. It’s incredible. What’s even more interesting is that my chiropractic adjustments have been holding better, too. Dr B said that his research turned up evidence that this supplement helps treat ligament laxity. Well, that’s been a problem for a long time, and might be part of the reason I can’t hold an adjustment. Ligament laxity led to me breaking an ACL in high school. In a Facebook post a few months ago, I surmised that I might be having a problem with estrogen given the correlation of flare ups with my hormone cycles. Looks like I was right. Estrogen is an inflammatory hormone, and it makes my brain burn like soy does. It seems that this supplement is working as it’s supposed to.

As my brain started to defog, I became more ambitious. I thought I was getting more energy, so I undertook a few larger projects. It turns out that all I got was ambition. I am motivated to do things, and thinking part is easier, but I burn out hard and fast in a day. What’s worse is that because I’m overexerting myself, I’m triggering Fibromyalgia flares. This is another prison I find myself in. As soon as I can see the outside world that I want to be a part of, I try to join it, only to be rudely prevented by the glass wall I didn’t realize was there.

One little bright spot in this health thing – check out this article. I’m also considering attending this teleconference with the FDA.

Projects:

At some point during these last two years (yes, it’s been that long now since I got so sick I couldn’t function normally), I came to accept that I cannot work in a regular job with scheduled hours. It’s a problem that a lot of chronically ill people face, actually. We can and want to be productive, it just has to be on our own terms (or more particularly, the diseases’ terms). I knew the only way I was going to be able to have gainful employment was to work for myself in a job that I could do when I felt well and neglect when I had a bad day. At first, I just did volunteer activities like fostering kittens and patient advocacy. I figured if I wasn’t accountable to anyone for a paycheck, then I didn’t have to work regular, scheduled hours.

Just last week, though, I embarked on what will hopefully turn into a paying gig. I opened a store on Etsy, Kitty Mine Crafts.    Nothing has sold yet, but I’m not terribly worried. I need to build inventory. I looked at competing stores and products, and I realized that there are hundreds of pages of merchandise available. I need to have a larger stock in order to increase my chances of showing up on any particular page. I spent most of the first week dying fiber, making batts, and purchasing supplies.

  I bought these dyes

 and this thirty-pound bump of undyed merino wool.

I had some undyed Falkland wool that came with my new drum carder (a Strauch Finest), so I got started with that while I was waiting for the supplies above. So far I have a few wool batts, some dyed roving, and one skein of handspun yarn listed. I also plan to sell handmade cat toys, but  I have to make some first!

I created a Facebook Page for the business as well. If you stop by either the store itself or the Facebook page, it would be helpful if you could click “like” on those pages, and/or on the particular items you happen to like. It helps publicize my stuff. I intend to put an Etsy widget for my store onto my blog, but I haven’t yet figured out how to make that happen.

There is another big project that I attempted (this week, in fact). Michael left for Gen Con ( he made a card & dice game called “Chaos and Alchemy” that he brought to demo at the convention), so I got to a task I’ve wanted to accomplish for a while – fixing the wood floor in the hallway between the kitten room, laundry room and office. A few months ago, my washing machine flooded that hallway – a $0.06 clamp broke, letting the machine overfill. After I fixed the machine, I noticed  the floor boards were all wavy. I had leftover boards from when I installed the floor in the first place, so I ripped up the warped boards and replaced them. In two days. I’m still paying for that, but I’m glad I did it. There was black mold that smelled like death near the kitten room door. Yuck. It’s gone now.

Kittens:

Today, I have five kittens in my kitten room. I returned their mother to the shelter yesterday because, despite being a very devoted mother to the kittens when they were all very ill with a URI, she suddenly turned on the kittens and started attacking them. It made me cringe to see the way the kittens cowered when their mother even walked near them, and I didn’t want them to learn to fear adult cats. Now Duck plays with them, patiently allowing the kittens to learn that not all adult cats are cranky.

Anning, the kittens’ mother, was only six pounds when she went in for her spay surgery!

Anning’s litter of kittens came to me because they had special needs. Two of the kittens had an eye infection so severe that the vets thought they might need to remove the eyes. I was given a ton of medications to treat these kittens: an antibiotic called “Clavamox”, an anti-viral pill called “Famvr”, an antibiotic eye drop called “Ofloxacin”, and another anti-viral eye drop (given HOURLY) called “Idoxuridine”. The kittens have been going back to the vet weekly to check on their progress, and I am happy to report that they are going to be able to keep their eyes! I suspect their vision won’t be as good in the infected eyes, but as of today, their eyes look so clear you’d never know they had an infection. This is what foster homes are so good for – the shelter staff did not have the time to devote to hourly treatments on the kittens, but I did.

So yeah, busy life.

I plan to get photos of the kittens in the near future, as well as continuing to stock my Etsy store. I hope this means I’ll have more time and ambition for blogging, but we’ll just have to see. No promises, but wish me luck.

P.S. Today is Michael’s and my 10th anniversary. It’s unfortunate that he has to be away, but it is for a good cause. Plus, we went on a cruise earlier this year, so we’ve already celebrated. 🙂

 

 

How the World Changed in a Month

Roughly a month ago I restarted my cleanse diet. I didn’t have the miraculous return to health like the first time I tried it, as I established in the last post. I did, however, have a few weird and disappointing discoveries.

After abstaining for a while, I decided to have a bit of coffee. I rely on caffeine to get through a day awake, and I don’t have a problem with the caffeine in tea, so I thought this would be no big deal. I had a cup of an unidentified flavored coffee in my fridge, and it gave me a stomach ache. I gave it a few days, then tried again with organic, plain coffee and seemed to not react. I added cocoa powder (soy and corn free) and had the stomach aches like I had with gluten. I tried chocolate almond milk (again, soy and corn free) and had the same bad reaction. A friend suggested I try raw cocoa nibs, and again, the same. So far, I know I have a problem with cocoa and possibly coffee (unlikely, but still possible. I should test more once I am completely healed). On the bright side, I told this to the acupuncturist, and she did a treatment that should correct that problem. I have to wait until my gut has completely healed to try again, so we’ll just see.

I added rice and potatoes back, too, and the jury’s out as to whether they are a problem. These, too, will be retested after abstaining for awhile. How does a person get so many devastating food allergies/intolerances?

Near the end of the cleanse, something even weirder happened. I woke up one morning and, while putting in my contacts, noticed that the whites of my eyes had turned yellow. I went to a doctor and she confirmed that my eyes were still yellow. She ran blood tests to check liver function, and since I hadn’t had a thyroid panel in a long time, ran that, too.

I was able to follow-up with my regular Nurse Practitioner, C, a week later. “Your tests are perfectly normal,” she tells me. “Every value you have is in the center of the range. Good job with the self-regulation of your thyroid hormone dosage, by the way – that’s perfectly in the center of the range, too.” I should point out, if I haven’t already, that C told me to dose my thyroid meds based on my heart symptoms rather than worrying about the lab values. Better to be hypothyroid than in heart failure as far as I’m concerned.

She then asked, “Were you vaccinated for Hepatitis B?” I told her I was, right before college. “Well, that’s odd – you have no antibodies, no immunity to Hepatitis B. I think you’re a non-responder as far as vaccines are concerned.” Makes sense – I’ve contracted diseases I’ve been vaccinated against (like pertussis) or already contracted and should have subsequent immunity to (like chicken pox – I got it twice). This explains a lot, though. My immune system is perfectly happy to attack tissues that belong in my body, but send in a foreign body and the immune system fails to respond. This, to me, is clear proof that something is wrong with my immune system. More confirmation for the ME/CFS diagnosis.

A few days later, I started to feel ill, My lymph nodes swelled up, I got a little congested… I (foolishly) thought I just caught a cold. Heh. I wish. It turned into the full-on flu. I suffered from that for most of a week, and have spent the last week recovering. The acupuncturist offered her theory about the situation. She said that maybe the jaundice was the first sign of the flu. Maybe it got stuck in the most vulnerable organ I had and then replicated there. I could buy that. Nothing about me is normal.

Luckily, I recovered in time to attend a conference on autoimmune disease at a local hospital today. I will devote a full post to that in the future (I’m no longer going to try to predict when, as my illnesses keep getting in the way). I am glad I made it to that conference – it seems that the research is going in the right direction.

In the midst of all this, I made a career move. Dr B has been telling me that I should get into patient advocacy. He thinks that I have some really good life experience, and I have a lot to add to that field. After dealing with a situation in which a friend was being bullied into seeing what other people thought was “the right doctor” for her condition, I realized Dr B was right. I have had to deal with so many health care choices, doctors who don’t listen (or are just plain wrong), other people who think they have THE answer, and other trials and tribulations of being chronically and mysteriously ill that I have a special insight into the whole process. An insight that I can use to help others get what they want and need out of health care.

I looked up information on how to become a patient advocate and learned that really, there is no process. You can just decide to do the job. There are no certifications or degree programs. There are classes and certificate programs, but they don’t actually certify you to do anything – they’re just educational. I might take some of those classes at some point (especially the HIPAA classes), but yeah, I’m ready now.

My plan is to make educational material and do talks about how to get what you want out of health care. Medicine is an uncertain science, and there is rarely only one right way to treat yourself, especially with a chronic condition. I want to point out that patients have rights to refuse treatment if they so choose. I want people to realize the doctor works for them, and that if he/she isn’t working out, they don’t have to stay with that particular practitioner. I want to teach people how to take control of the situation by doing their own research and getting a doctor to listen. I want people to understand that they, not the doctor, make the healing happen. I want them to really think about how they want to care for their health (i.e. natural vs. pharmaceutical, preventative vs. reactive) and go get that. So, I’ve started by attending the autoimmune diseases conference. I’ve also got a nebulous outline for my first talk.

I’ve already had to put my patient advocacy skills to work with our fluffy friend, Duck. For the last few years, Duck has been plagued with diarrhea. I could usually make it go away with lots of probiotics, but this time, it stopped working. I took Duck into the vet and learned he lost roughly half a pound (this is a lot for a twelve pound cat). The vet did an ultrasound, and showed me that Duck has inflammatory bowel disease. His intestinal walls had thickened in some areas, indicating that immune cells are coalescing. The doctor then informed me that Duck would need to be on corticosteroids and chemotherapy for the rest of his life.

I reminded the vet that I foster, and suppressing Duck’s immune system long-term seemed like a poor choice, given that I invite cat disease into my home with every litter I take. “You’ll just have to cross your fingers with that, I guess,” he told me. I asked what long-term effects the chemo might have, and he said that there was an office cat who had been on chemo for seven years and he was just fine. The vet then gave Duck a steroid shot and sent me home with the prednisone and chemo meds.

I left with the medication, and burst into tears on the way home. The vet nurses told me that I would have to give Duck the chemo meds while wearing gloves – that the medicine wasn’t safe for me to touch. I thought about the idea that, if the medicine isn’t safe for me to touch, how could it be safe for my two-year-old baby to take? I always knew he could die young, but to die of the effects of chemo? I then realized that the principles I wanted to convey in my patient advocacy practice apply here. I sought a second opinion with a holistic vet.

This vet, along with several of my cat harboring friends, thought the suggested protocol was extreme. The holistic vet offered me supplements, along with a vaccine detox (unlike in human medicine, veterinary medicine recognizes adverse reactions to vaccines) to try first. Luckily, Duck likes the supplements, and started eating as soon as the steroids wore off.

He hasn’t had any recurrence of the diarrhea yet. I’m not taking steroids off the table entirely, but I am never going to do the chemo. I decided (after reading about how the outcomes of most cancers do not improve despite treatment) that I wouldn’t treat cancer in myself or my cats (save for easily treated versions like early stage melanoma). No, I cannot justify the use of chemo in any circumstance.

In other news, I picked up a foster kitten about a week ago. Meet Mozzie:

When he sits, Mozzie has a heart on his left flank and a broken heart on his right flank. When he stands up, the markings are less obvious – they’re more roundish blobs.

Mozzie was shy and ill when I first got him. He hid behind the toilet and hissed when we went in to visit. It a matter of days, Mozzie cracked – he loves us now, and turns out to be the most affectionate kitten. Mozzie loves to be held, he loves to purr, and he loves to simply be near his people.

In addition to all the above events, this month I got wind that yet another of my friends is expecting. I’ll reveal who in a few months – she wasn’t telling anyone at first, but decided a few days later that maybe she did want to tell. I’ve informed a few close friends, but I somehow don’t feel right announcing it here just yet. I am knitting and crocheting baby stuff like crazy now. I am squeezing in a few other things, but not a whole lot. I fear Michael may never get his socks!

Well, maybe I’ll work on them when we go on the Caribbean cruise we also planned this month. More details about that in the future.

Told you the world changed this month!

The only thing that didn’t change is that I’ve kept knitting. I finished K’s winter garments:

But I forgot to photograph the mittens before I mailed them! Oops. I’m going to visit her and Dr B in May, so I’ll try to get a shot then. Maybe I can a picture of the socks I made her for Christmas as well.

I’m also almost done with Dr R’s giant socks. I’ll see if I can get a shot if him wearing them on Monday (because I should totally have them finished – they are worsted weight socks, after all…). I’m also making progress on Jen’s crayon blanket. Her little girl is due in June, so I don’t have a whole lot of time left.

Well, I have a lot of work to do. My next priority is talking about the autoimmune diseases conference, so be on the lookout!

A few endings

My life seems to be about endings right now. Some are good, some are bad, and some just are. I’m not sure if that’s contributing to the way I feel, but right now, I’m right back where I started over a year ago. I’ve had the slow onset of emotional instability, followed by crushing fatigue and depression. The physical pain is getting bad again, I want to be dead, my brain is only working at its slowest possible pace… it’s all just going down hill.

Like I said, there are some good endings. I finished Alexis’s sweater for when I see her at Christmas. Julie L helped me find the cutest buttons that I believe make the whole project.

Now I’m working on booties to add to the baby hat and mittens set I made for Vickie. I’m also working on a sweater for Blaine and a blanket for another friend who is expecting a baby in the summer.

My back yard has turned into a beautiful fall scene. I do adore summer, though, and it just signals the end of my favorite season.

(click to enlarge)

There is one ending, however, that is currently devastating me. I’m not sure if it’s contributing to my current state of decline, but I wouldn’t doubt it. On Monday, I have my last appointment with Dr B. Normally, this wouldn’t be such a big deal. I’ve had a lot of doctors come and go, and I’ve had a lot of friends move (and I’ve done so myself). But this time, it’s so very different.

When I got sick nearly a year and a half ago, Dr B was there to watch my decline and try to help me through it. Through the process he became like family. He didn’t try to treat me like a science experiment like the doctors I am seeing now are doing.  Unlike my other doctors, he worries about how side effects and risks of diagnostic procedures are going to impact my life. It genuinely upset him when he thought I might suicide. He was never content to just tell me that he had no idea what was going on and that I had to live with it. He kept trying. That persistence on his part helped me stay focused on my goal of getting better, helped me to believe that maybe I could get through this. And as insignificant as this might seem, he was simply there to hold my hand through the whole thing. It might seem odd, but I am not at all afraid of this illness, or the possibility it could kill me, or anything like that – I’m simply afraid of going through it alone. Afraid of going through it with doctors who are cold and uncaring, putting me through pointless procedure after pointless procedure, telling me maybe I have a psychiatric disease or that I need to exercise more despite that fact that it makes me worse (I do think that part of my current decline is the exercise program the cardiologist started me on). I’m afraid of never getting better and vanishing into obscurity. I’m afraid no one will notice my absence. I’m afraid no one notices now.

Dr B will still be with me, sort of. We’re going to keep in touch, on more of a peer-to-peer level. It’s fantastic, and he couldn’t have handled it any better, but the fact remains that even with all the technology we have, it won’t be the same. I talk to my friends on Facebook all the time, but it isn’t a substitute for seeing them in person. I feel pretty darned isolated in my current condition. I don’t know what it is about that person to person interaction, but it matters. Heck, I adore my brother and his family, but between visits, it seems as if they don’t exist. I don’t live near family, and save for my brother, I don’t seem anyone all that often. We just aren’t a connected bunch. That’s why losing Dr B is so devastating – I feel like another family member is just… leaving.

I’ll get through it, or I won’t. There is no point in worrying how it will turn out. It’s only the here and now that matters, and it sucks. <groan>