Choices and Consequences

I fear this may be another of those posts that several people I’ve talked to will think is about them. Again, I will start with a disclaimer that this is really about quite a few conversations I’ve had seemingly within a short period of time of one another. It’s not about you – it’s about what these conversations have brought into my conscious thought.

The word consequences has somehow taken on a connotation that isn’t quite… correct. A lot of people think that the word consequence means something like “punishment” or “the bad things that happen when you make the wrong choice”. Consequence actually just means “result” or “that which follows”. There is no judgment on the goodness or badness of the result, simply that there is one.

I maintain the position that all decisions have consequences. If I get out of bed, the consequences are different than if I spend the day in bed. If I wear a red shirt, the consequences are different than if I wear a white shirt. There’s nothing inherently wrong with any of the choices I’ve presented here, but when I make these choices, things are going to happen that equally lack moral implication.

I support, very strongly, the right of people to make choices for themselves when their choices affect only themselves. When the choices affect other people, the issue starts to get grey and I only support limits on the choices when a bad choice can have nothing but detrimental effects for those around the person making the choice. I do not claim that all of my positions are “right”, but I do feel I do the best I can with an ethical quandary. I think that the principle that most guides me is that I feel I do not have the right to decide for other people what is right and wrong for them.

This is an attitude I try to take into my work with patient advocacy. Make no mistake – I have an absolute view of what is right and wrong for me, what is right and wrong for my husband, and what is right and wrong for close friends and relatives. That said, I fully exercise my freedom to decide what is right for me, I lean heavily on my husband to decide in the way that I think is right for him, and less heavily on close friends and family.

I lean heavily on my husband because I have a lot of information about him – what his health actually looks like, how his lifestyle plays into his health, what he wants his health to look like, what I need his health to be like given that I am his partner, what his feelings are on the risks and benefits of certain treatments, etc. There are still parts that are unknown to me about his decision making process, but I know that he does what I tell him because he believes, in the end, that I have our best interests at heart. I also know that if I weren’t around, he wouldn’t take care of himself. It’s not him specifically, it’s just that I’ve heard time and time again from other wives, doctors, and even from my husband himself that men categorically just aren’t all that concerned about health unless there is something immediately affecting their ability to do what they want. They discount the future because it’s not immediately obvious how what they are doing today affects what will happen down the road.

I lean less heavily on other people I know and care about because I have less information about their feelings on the issues I listed above. Their health affects me to some degree. If, for example, my brother and his wife decide to completely disregard their own health and start taking dangerous recreational drugs (a decision I know they won’t make – this is just a hypothetical example), I will end up raising their two children. This affects my life. I feel that gives me a right to make suggestions, but not to dictate how these other people choose to live their lives. In the end, I want these people to live a life that properly balances the costs and benefits of each choice they have. I want them to be happy. And I want them to remain in my life for as long as it is mutually desirable.

Here’s the catch – I don’t always know how my close friends and family weigh the costs and benefits of each of their choices. As far as strangers are concerned, I know absolutely nothing. For some people, raising the risk for a certain disease by even a small amount is too much. They will do everything in their power to avoid increasing their risk, and often, they will do what they can to reduce the risk. For other people, the inability to eat certain foods that they like is far more detrimental than actually dying of complications from diabetes or heart disease.

While I have a hard time understanding positions that are different from my own, I know that I wouldn’t want someone who values health less than I do to tell me what choices I can make to guard it. I know that someone who values food more than life itself wouldn’t want me stopping them from choosing what makes them happy. Here’s the bottom line – we each have just one life. We have to spend each day deciding how much we can sacrifice, how much we want certain things, and it has to come out to the right balance for ourselves. Some people want to be nothing but happy all the time, and do what they want regardless of how it affects others around them. Some people care about how the others around them feel, and that factors into the balance they choose. As much as this is not a pc thing to say, some people function best when they have something to be unhappy about, so they make choices that the rest of us view as sub-optimal.

I would be lying if I said that I don’t get frustrated when someone makes what I view as the “wrong” choice. I also hate not doing something about it, but trying to impose my will on someone else is actually counterproductive. When someone tries to bully me out of my choices, it only makes me want to shut down and dig my heals in further. When someone calls me names like “stupid” or “moron”, I immediately decide that they are telling me about themselves and ignore all that is said after that. I would rather be led to a new decision than to be dragged into it. This is the difference between an internal compass and an external one. If you are telling me that I am making wrong choices, but I cannot inherently see why my choices are problematic, I am going to continue behaving the way I did before, but I’ll just make sure you don’t find out about it. If you can give me information that makes me want to change my internal view, then I will change my behavior. It’s that simple.

It works that way for most people.

I’ve found over the course of my life that when people make decisions I don’t understand, it’s usually because we’ve been exposed to different information. The example I most commonly encounter currently is the issue of purposely eating gluten when you know you have a problem with it. I cannot understand why anyone would value bread enough to give up health for it. For the people to whom food is more valuable than health, we will never come to a similar conclusion. I have learned though, that people who value health but continue to eat gluten when they know for sure it’s a problem for them, it’s usually that they don’t know what I know. They don’t know that you aren’t just getting a stomach ache or a fever or a rash. They haven’t attended the autoimmune conferences that I have in which I learned that inflammation is the root of most chronic disease. They don’t know that continuing to eat something you have an allergy to raises your risk for diabetes, heart disease, autoimmune disease, cancer…

If I encounter someone who is making “bad” (I use that word in quotes because this is my value system, and is not necessarily applicable to others) choices, instead of shaming them, I try to educate. For the gluten example, I teach them that what’s really happening inside your body is just like a chemical burn. You get areas that are literally hot and inflamed, and you get scars. You overwork your immune system, and overworked cells (just like overworked people) make mistakes, leading to all the other long-term consequences. I back up my position by pointing them to the primary research.

More often than not, the people who share my value system eventually make a similar decision to the one I have, to not deliberately cheat themselves out of health for a piece of cake. There will always be differences in the degree – I mean, I’ve been tempted once or twice to go to freaking Krispy Kreme and just eat a box of donuts, because they are that good. I didn’t do it, though, because I thought about the consequences of that choice. I will have a stomach ache. I will lose a day (at least) of my life stuck in bed. I will increase my risk of the already prevalent heart disease that runs in my family. I will be one step closer to the diabetes that has been threatening me since I was a teenager. If I didn’t know the consequences, I’d be way more likely to eat the donuts. It’s so much easier to make the “right” choice when I have a reason to do so. Other people might be a little more lenient – maybe have something they shouldn’t because it’s just once, and the problem is really just the accumulation of damage over a lifetime, and the occasional mistake isn’t going to kill you. It’s their choice. I can only inform, not force.

My overarching point is this: You have the right to make decisions for yourself. You can be expected to weigh in on other people’s decisions that affect you, but your total control level is lessened. You cannot make someone else do something by brute force and expect it to stick (or expect them to continue liking you). And really, when you are judging someone else (and we all do it) – ask yourself: What makes me the moral authority on this subject? Does this person’s choice affect me? Do I know enough about this person’s value system to accurately assess why he makes the choices he does? Can I make my point effectively without insulting the other person and achieving the exact opposite of my desired result?

Food for thought.

All the Rest

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

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

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

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

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

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

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

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

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

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

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

I just developed “Kitty Fusilli”…

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

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

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

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

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

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

Snow Unnamed boy1 Unnamed boy2 Unnamed boy3 Unnamed boy4

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

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

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

 

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

Duck's Kitten

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

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

How to be Friends with Someone Who is Chronically Ill

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!

Getting Busy

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

Health:

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

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

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

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

I shouldn’t have.

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

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

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

Projects:

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

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

  I bought these dyes

 and this thirty-pound bump of undyed merino wool.

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

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

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

Kittens:

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

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

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

So yeah, busy life.

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

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

 

 

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.