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.

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.


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.


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.


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. 🙂



Adventures in Flight

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Everything Changes

I have been meaning to post for a long time now, but my absence this time hasn’t exactly been like the others. The greatest reason I haven’t posted in a while is that I really want to finish my report on the autoimmune diseases conference, then a report on a webinar I attended on cognition in CFS/ME, but I haven’t had the mental fortitude for it. I often get hung up on the idea of doing what I need to do as opposed to what I’d like to do. If I can do something that needs to be done, I tend to get on that right away because I never know when the opportunity might arise again. I came to the conclusion that I should write, even if it isn’t what I “should” be writing about.

Since my last post, a lot has transpired. I had several weeks where I felt amazingly, wonderfully normal. Not totally normal, but I was waking up before 8:00 in the morning, my head was clear, and I could do things I hadn’t been able to do in years. For example, I painted my kitchen and entry hallway.

This is just a crappy picture from my cell phone, but you can see I did the ceilings and the walls.

I finished that work just before I left for my cruise in April. I have some pictures that I hope to post at some point. The trip was nice, even though we missed a port-of-call due to high winds and waves. I got thoroughly sunburned, but it was nice to just travel purely for pleasure again. For the record, Carnival Cruise Lines does a great job with gluten-free food.

I then went to visit Dr B in May after a business trip to Chicago. I believe we will be repeating that trip in October. I didn’t manage to photograph the things I knit for his wife, despite my best-laid plans. I’m getting used to this kind of thing now. Nothing seems to go as I intend.

After the cruise, and maybe even during the trip, I started to slide backward. I had a hard time waking up early, and I started to have flu-like symptoms. I had to rely on pseudoephedrine and caffeine to get through a day. I gained eleven pounds. And I was freezing to the touch, even in 90+ degree weather. This led me to believe I needed to start taking thyroid hormones again, as all of these things are explicit symptoms of hypothyroidism. I had stopped taking the hormones roughly three months before, and my sleeping schedule had normalized to a late-rising, but generally steady daytime schedule. When I started on the thyroid hormones again, within 24 hours my schedule began the familiar rotation around the clock. I couldn’t sleep before 4:00am, and I couldn’t wake up before noon. I’ve been playing with the dose, and it seems I can take about 25mcg twice a week without causing the schedule to rotate so severely as it always has (it took about 10 weeks for a full rotation around the clock). I’ve been able to wake up around 11:00 or so the last few days. I’m hoping for a better schedule by the weekend, as I would like to attend the Estes Park Wool Market on Saturday, and I need to manage a two-hour drive at an early hour.

So, at first I wasn’t blogging because I decided to jump on the the new-found ability to do the things I used to do. After that, it was because I was too sick to manage the thinking required.

I’ve been knitting, but in the last week it has been difficult. For some reason I can’t thoroughly explain, I started losing the use my right arm. I know there is some muscular involvement, but also neurological involvement. My arm frequently goes numb from down the backside of my forearm to the tip of my pinky finger. If I don’t keep the arm supported, It starts to feel like the weight of my arm is too much for the muscles in my shoulder. The arm actually starts coming out of the socket. This makes knitting, driving, typing – all of that – difficult. I get some relief from the chiropractic adjustments, and a little from massage. I also thought about my POTS diagnosis. I tend to sleep on my left side because it keeps my heart from racing (the blood pools in whatever part of me is downward when I am still. I can’t fight the effects of gravity on my blood supply, so whatever is on top gets deprived of blood supply. When I am upright, my brain takes this hit. If I am lying down and my heart is deprived of blood, it starts to race in an effort to increase it’s own blood supply, but this effort actually fails because my heart moves too fast to effectively refill and it makes the problem worse). I thought that maybe if I could force myself to sleep on my right side, the blood would pool there a bit and I would have relief. It sort of works – I am not in pain as soon as I wake up, but it still gets there later in the day. Now my left pinky is going numb, too, probably from slight blood supply deprivation. There has to be a balance.

So, as for the projects I am actively knitting (you can click on the small pictures to enlarge them):

1. Carousel Sock knit-along with Sara. I’ve actually finished the first sock, and plan to cast on the second this evening. I’m going to get Michael to help me photograph it.

2. Baby Surprise Cardigan for Lane. She isn’t due until the fall, so I have some time. I plan to make more, but I’m not sure what yet.

3. Color Me blanket for Jen. I edited this pattern to make all the crayons face the same way. I’m compulsive like that. Jen had her baby about 10 days ago. She was a little earlier than we expected, so I didn’t finish in time. I despaired for a few days, then managed to start working on the blue crayon again. I’ve completed the green one, and I still need to make the purple one. I can do it quickly if I can just manage the focus.

4. Basic socks for Michael. There is nothing fancy to this patten, just stockinette socks in a variegated wool (Cascade Heritage Paints in 9931 Indian Summer)

I still have plenty of other projects in hibernation, but I’m focused on these.

I recently finished a few things as well.

1. Striped Blueberry Bubbles socks for me. I started and finished them on the trip to Chicago and Minnesota.

2. A crocheted Spiderman hat for Dr B’s nephew, J. J loved the hat the moment he saw it. He loved my blueberry bubbles socks, too, and suggested they would make great soccer socks for him. I promised to make some soccer socks for him just as soon as I could – I think after I finish the crayon blanket. I should point out that J is three, so I don’t consider it at all forward of him to just ask a relative stranger to make him some socks. My niece did the same thing regarding a sweater at one point. I find it flattering, even though their parents found it mortifying. I am never going to discourage a kid from liking yarn crafts.

3. Gentleman Socks for Michael. I had a hard time motivating myself to work on these, but once I had that motivation, they were done. I think the motivation came from procrastinating on another project.

I would have been knitting for one more baby right now, but the friend I wasn’t ready to name in a previous lost the baby. Guess my instincts were right about not feeling like I should announce it yet, despite having permission.

I’ve also been spinning, but I haven’t photographed that, either.

I’ve also fostered about eleven kittens since Mozzie. The first set was a mother, Clair, and her five kittens named for characters on The Cosby Show. I have to see where I put the pictures. Now I have five kittens without a mom. They were exposed to Panleuk, and they needed to leave the shelter. The kittens are perfectly healthy now, so they should be going back soon to get adopted. They have been named after characters from The Office. I need to photograph them as well.

So, I’m glad I posted today. I had a lot to say, and I’m hoping that getting what I wanted to do completed will free up my energy to do what I need to (the rest of the educational posts). I think this is going to be another life management lesson for me – it’s ok to do what I want to do if I don’t have the energy to do what I need to do. I’m not saying this applies to everyone, just people who have limitations like I do. This will no longer apply if I miraculously get better. But for right now, this will have to be my new rule.

A Little Understanding

I’m not ready to put the kind of thought I need to into the explanation of the autoimmune diseases conference, but I did want to take some time to reflect on something that came up recently. I know that getting CFS/ME changed me. In some ways, it was very bad. In others, it was actually good.

Before I get into my story, I wanted to link to another blog post in which the author describes what it’s like to live with a chronic, disabling condition. I find it to be very accurate. For those of you who are my Facebook friends, I posted this already on that page. This article certainly describes what has changed for the worse.


So, the story of change:

I was driving to one of the eight health care appointments I had this week, when I found myself in a traffic situation. A guy had attempted to cross a six lane thoroughfare in order to make a left turn, but only got halfway across before getting cut off by the oncoming traffic (why this intersection is governed by a stop sign instead of a light is beyond me). The road has a median that breaks at this particular point, and he was trying to hover in the break while waiting out the herd of cars. The thing is, the back end of his car blocked the entire left lane of the road in the direction I was going. My lane.

Most people I know would instantly get angry. They would be frustrated that this would make them late to the appointment. They might rail against the a-hole who thought the world revolved around him and that he had the right to stop an entire lane of traffic because he wanted to make a left turn. But I saw something else.

If you read the link above, you will understand that I have a limited number of units of energy in a day. It was not worth it to me to spend an extra “spoon” on this guy by being angry at him, so I simply stopped and waited for him to be able to finish his turn. What I saw when I examined the guy was a little surprising, but also familiar. His facial expression looked pained, not self-important. I saw right then that he had simply made a mistake in thinking he had time to turn, and he wasn’t on an ego trip in which he fancied himself the center of the world. At that moment, he felt judged and ashamed.

I waited patiently – I didn’t honk my horn or give him the bird. The guy in the car looked confused, then relieved. He waved “thank you” as soon as he was able to get out of my lane.

The situation would have ended the same way whether or not I got mad. I would have been held up for a minute, the guy would have eventually moved… the only difference is it would have cost me something to react in a hostile manner. In this scenario, I lost nothing, the guy in the car got to experience the relief of not getting blasted for making an honest mistake – we all won.

I’m not sure that I would always have reacted this nonchalantly to the above traffic situation. There was a time when I didn’t understand why people don’t act in the way I expected them to, and this frustrated me. I assumed that the actions they took were deliberately malicious, rather than errors in judgment. When I got sick, things started happening to me. I’d forget what I was saying mid-sentence, or start going somewhere and forget where that somewhere was halfway along the path. I wasn’t always fully aware of my surroundings. I moved too slowly for some people. Now I know that other people may be experiencing things that I can’t see. Maybe the guy blocking my lane has a condition that makes it hard to think clearly. Maybe there was something going on at home or work. Or maybe he just messed up. It happens. It’s not my place to judge or hand out punishment.

This issue came up again for me today (thus prompting me to write this post) when I was reading boards on Cruise Critic. (So help me, I can’t wait for the next five weeks to pass so I can get on that ship! At least I have a trip to San Francisco in a couple of weeks to break up that waiting period.)

I came across a thread about chair hogs. It’s a silly thing, but on cruise ships, the chairs next to a pool can be a premium find. Some people will get up early and stake a claim on one of those chairs by dropping a towel on it, then come back hours later, expecting the seat to still be saved. I generally find this practice to be annoying, but it’s not worth getting worked up over. If there is an unattended towel on a chair and no other chairs are available, well, I’ll move it. Problem solved.

The person who posted the thread in the first place asked others to comment on an experience in which she had been sitting in a chair for a long time and was saving the neighboring chair for her husband. Another woman had jogged laps around the pool, then stopped at some point to chastise the poster for saving a seat when it was clearly against the cruise line’s stated rules. Here’s the thing: the poster’s husband was mere feet away at the ship’s railing, and there were several empty chairs near the saved seat. The poster offered to move her husband’s belongings and give the seat to the jogger anyway, but the jogger left in a huff. She didn’t actually want the seat, she just wanted to enforce rules.

This is just like the traffic incident – the person “violating” the rules wasn’t doing so maliciously, nor did she cause any real harm to anyone else. The jogger who observed the rules violation and tried to mete out punishment only managed to disturb her own vacation day and that of the poster. She failed in both punishing the poster and realizing that there may be more to the situation than she immediately saw. I feel like this happens a lot in the world: we get angry at other people and try to deliver punishment when we just don’t have a real reason to do so. We waste a lot of time and energy hating that which gets in our way, and we miss that there may be a good (or at least understandable) reason for the situation. We don’t want to forgive, we  just want to enforce rules. Our own rules.

It’s just something to think about next time you find yourself frustrated by someone who is violating the rules. Maybe it’s not worth using up a spoon.

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!