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.

Adaptation

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!

All the Rest

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

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

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

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

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

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

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

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

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

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

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

I just developed “Kitty Fusilli”…

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

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

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

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

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

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

Snow Unnamed boy1 Unnamed boy2 Unnamed boy3 Unnamed boy4

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

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

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

 

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

Duck's Kitten

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

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

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.