It’s not a competition

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

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

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

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

The situation:

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

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

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

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

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

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

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

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

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

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

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

2. Pain and suffering are not competitive sports.

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

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

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

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

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

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

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

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

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

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

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

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

And for what reason?

Because I look young?

Because I don’t look sick?

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

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

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

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

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

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Week in Review

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

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

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

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

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

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

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

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

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

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?

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!