Friday, May 21, 2010

Mobility Issues and the SCA

A walking stick works well for those of us who have problems walking all day, but that does not take into account people who require a little more assistance. You are probably well accustomed to thinking outside the box already, but here are some ideas.
It may well be worth inquiring ahead of time about spaces for the handicapped. (I do not know if this is an option, seeing as I just develop a limp over the course of a day as opposed to using a wheelchair). The site may or may not be wheelchair-friendly, so you may want to ask about that as well.
You might want to design your garb around your mobility. For example, a long, heavy wool houppeland might get caught in your wheels. While long and flowy might be accurate, you might do best if you cut them a little slimmer.
Camp as close to the main green as possible. If you can camp on it, then you don’t have to lug (or have someone lug) a chair around to the various demos, classes, and general gatherings. However, my understanding is that most events require you to have a mostly period campsite to camp on the green proper: canvas instead of nylon, cookfires instead of Colemans, duct tape kept to a minimum, etc.
Decorate your hardware. I’m not saying that you have to hide your aid, but maybe it would like some garb, too. I have seen walkers done up like May poles and, for the truly ambitious, motorized wheelchairs dressed to resemble horses. They generally came out looking more like hobby horses, but it was fun nonetheless.
I know of one fighter who uses a chair. I teased, asking if she jousted. In order to even learn, she had to overcome two-pronged discrimination: sexism and ableism. She said that when she had finally found someone who was willing to work with her, he had suggested that option in all seriousness. If you are reading this blog on any sort of regular basis, you can understand that a jousting is not suitable for someone using a chair. Instead of asking her some questions and learning more about her abilities, he had made an assumption. He did come to understand, and, I believe, she ended up with a short sword.
And when in doubt, sucker some big, strong handsome fighters to tote you around in a sudan chair. Bonus points if you have an Eastern persona.

Tuesday, May 18, 2010

New post on Functional Movement Disorder and Conversion Disorder

My latest blog post addresses Functional Movement Disorder and Conversion Disorder from both a personal and a more impersonal perspective.  I've especially outlined some of the issues with Conversion as a general diagnostic category and the problems with directly equating it with FMD.
The comments are interesting - someone has already asked about rates of diagnosis by gender, which adds another wrinkle to a complex, confusing, and controversial issue.
Come join the conversation if you like!

Tuesday, May 11, 2010

SCA... Chronic Bitch Style

Outdoor events in the Society for Creative Anachronism are the only way to go. However, not all of us are young, drunken idiots who could pass out under a bush and wake up bright-eyed and bush-tailed the next afternoon. Here are some tips on how to survive a weekend in the great outdoors... unless you're a heavy fighter, then there is no hope for you.

1. Consider an RV
Pros: I know someone who uses a camper to keep his insulin refrigerated. It's a bit more comfort if you have chronic pain, and warmer if you have temperature control issues.
Cons: You might get some looks or snide remarks. To minimize this and have a little fun, you can convert it into a gypsy wagon if you have the skills and spoons.

2. Air mattress
Pros: If you have anything from minor aches and pains to chronic pain issues you will want an air mattress. You will stay much warmer, especially if it rains.
Cons: Do not forget the air pump and extra batteries. Bring duct tape and minimize the possibility of holes. There will eventually be holes.

3. Pill case
Pros: If you lose it you won't lose your entire supply. Keeps them dry. You are more likely to keep it in your purse (yes, even men had purses back then) or basket so you can remember to take it.
Cons: You are either out a couple of bucks or, if you're only taking one or two medications, you can use an old pill bottle with the label peeled off.

4. Bring and Drink Plenty of Water
Pros: Avoid heatstroke and dehydration, both of which are dangerous in and of themselves without other medical problems on top.
Cons: You will have to use the biffies.

5. Bring Food That You Can and Should Eat
Pros: If you plan a balanced diet you will be less likely to gain weight, have more energy, and less likely to have otter problems. Plan for light meals throughout the day rather than three heavy meals, which can make you sluggish and drain your energy.
Cons: You might envy your neighbour who only brought sausage, cheese, and lots of alcohol now, but you won't when it catches up with him.

6. Don't Get Hammered
Pros: Less likely to trigger depression, get dehydrated, or complicate your medications. You will be more likely to remember to take your medications on time and maintain your normal sleep cycles.
Cons: You won't be pissing off the entire encampment with your impromptu roving Bardic circle at 3 a.m.... Wait, remind me how that's a con?

7. Earplugs
Pros: That drunken roving Bardic won't wake you up in the middle of the night. Or that guy who likes to blow his conch at dawn.
Cons: They might be hard to sleep in if you are unaccustomed to them.

8. Walking Stick
Pros: You will end up doing more walking than you originally intended and a walking stick will definitely help, doubly so if you have any mobility issues. Can double as a weapon for drunken idiots who think they lurve you.
Cons: If you are extremely klutzy it might prove more of a hindrance with long skirts. Don't ask me how I know this.

9. Sturdy Shoes
Pros: Again, lots of walking. Take care of your feet.
Cons: What works best for your feet might not be considered "period." Who cares? Your feet are more important.

10. Camp in Groups
Pros: Chores can be divided. If you can't unload the car, you can set up and organize camp. You can cook and have someone else haul your camp chair around for you. They can remind you to eat or take your meds if necessary, and in turn you might keep them from sleeping with that fugly idiot three sites down.
Cons: Unless you're camping with random strangers, you will be a better judge of any problems that might arise.

11. Bring a Chair
Pros: You will have a comfortable place to rest, especially if you bring a pillow or two. If not then the hard ground is pretty much your only option. Those pillows might help for a bit, but everything will be complaining after one afternoon.
Cons: Unless you have a director's chair, it's unlikely to be period, but a blanket can help disguise it as well as providing extra warmth. You will have to haul it around, unless you work something out with a campmate.

12. Keep Your Schedule

Pros: Your sleep cycle will be maintained, usually meaning less insomnia or hypersomnia. You'll be less off-balance when you return to the modern world. Although if you've been meaning to change your schedule events can be a good time to change it.
Cons: You won't be in a drunken roving Bardic at... Aw, never mind.

13. Stay Warm
Pros: A hot water bottle, heating up a rock, or a partner to take to bed with you will help.
Cons: You may experience burning or possible sexual side effects.

In short, try to keep things as similar to your home environment as possible.

Friday, May 7, 2010

Pleased to meet you, hope you guessed my name...

The nature of my game does seem to trouble a lot of people (and if you're too young to remember the heyday of the Stones, try googling song lyrics.)

I've been going by IndiaJoy online for the past 5 since that's where I've called home during that time - far up in the Northern part of that country, in the state of Himachal Pradesh, about 100 km from the Tibetan border as the crow flies ('cept the crow doesn't fly there, too steep, so it might as well be 1000 km for practical purposes.) Don't be surprised if you're not following me too well - the whole process of tracking my life and times proves puzzling for just about everyone, self included.

Somehow I've come to be the owner/administrator of the Chronic Bitches group on Ravelry (due mostly to my habit of saying "okay" first and thinking about it second) something which is only made remotely possibly by the grace of my wonderful co-admins and moderators who have more more tact, attention and people skills than I can manage these days. Thank (insert deity/ies of your choice here) for them and for the whole lot of you Chronic Bitches who have kept me (sorta) sane during the last trying year!

I doubt if I need to explain my qualification for Bitchhood here, but my qualifications for Chronic just keep growing. I'm in the process of filing for disability and we ran out of spaces in which to list diagnoses on the form long before we ran out of actual diagnoses! For the longest time I thought my main complaints were severe osteoarthritis in both knees (due to a motorcycle accident in '87,) asthma, chronic venous insufficiency (also due to same accident) and Fibromyalgia (which covered everything else.) Then we discovered that I have an autoimmune hypothyroid disorder which had led to severe (really, really severe) iron deficiency anemia. Unfortunately, treating that triggered a landslide of reactions which ended up with me hospitalized for Congestive Heart Failure (who knew that could happen when you have no iron to carry oxygen to your heart eh?) COPD, Some other stuff with long names that means that my left ventricle doesn't want to work anymore and, as a result of the rest, hypertension, more severe vascular disease than I'd previously thought, a big old dollop of depression and, the gorgeous centerpiece - Carcinoid Syndrome, which means that somewhere in my body, hidden where the CT Scan couldn't find it, lurks a tumor or tumors that are pumping out all sorts of nasty endocrine secretions and probably causing most of the nasties that weren't already caused by the motorcycle accident. If you've read this far, you must be either a doctor or compulsive.

At the moment, I'm hanging out in Portland, OR with my daughter and grandkids, trying to do my physical therapy so I can heal rather than drop dead in the next six months and - hopefully - get to the bottom of this carcinoid thing. Eventually I hope to head back to my lovely home in the Himalayas where I research the traditional textiles (especially knitting) of the region (am working on a book or three on the subject) and run an emergency assistance program for Tibetan refugees, hill tribes and others without the means to obtain vital medical care or the necessities of life. Up there I can do a little bit of good in this world. Down here, well, I do get to spend time with my grandkids who give me a lot of incentive to go on living despite the chronic crappola! And I knit. Obsessively and wherever in this world I happen to be.

CB Glossary

As with any shared-interest community, the CBs have developed some specialized slang to cover frequently-visited topics. We have also picked up a fair bit of jargon from the medical profession due to our intimate involvement with it. Here are some terms that might be unfamiliar to new readers.

Note: LYL contributors are encouraged to link to this post when using these terms. One link per term per post is plenty, just enough that people can get the definition. :-)

Chronic Bitch: 1: Member of the Chronic Bitches group on Ravelry. 2: Any person (usually female) who has a long-term illness (not necessarily permanent or uncurable) and who refuses to fall into stereotypical "sick person" roles and behaviors, choosing instead to get as much living done as possible.

Jellyfish: Vomit. Can be used as a noun or a verb.

Meds: Medications, as distinct from supplements and recreational substances. Usually, but not always, refers to substances taken internally.

MT: Massage Therapist

Normie: Person who does not have any form of disability or chronic illness. Sometimes used more specifically to refer to someone who lacks insight into or sympathy about the realities of chronic illness.

Ortho: Orthopedist; Doctor who specializes in disorders of the musculoskeletal system.

Otter: Diarrhea or Constipation, sometimes referred to as River Otters or Desert Otters, respectively. Can be used as a noun, as in "having otters" or a verb "to otter".

PT: Physical Therapy

Ravelry: The most comprehensive yarn-crafts site on the web, with features including yarn/needle/book/pattern collection tracking, knitting and crochet patterns, extensive forums, and WIKIs on various topics, many (but not all) related to yarn.

Rheumy: Rheumatologist; Doctor who specializes in autoimmune disorders of the joints, soft tissues, and connective tissues. Most common medical specialist for Chronic Bitches to be seeing regularly.

Shrink: Psychiatrist; Doctor who specializes in mental disorders. Sleep problems are commonly treated by psychiatrists, many uncommon or newly-recognized diseases are mis-diagnosed as psychiatric disorders, and trauma and stress related to chronic illness can cause or trigger psychiatric disorders.

TENS or TENS Unit: Transcutaneous Electrical Nerve Stimulation unit; an electronic device, usually portable, that stimulates nerves in various parts of the body to relieve pain.

Voltron or Voltron Gel: Voltaren gel, a topical anesthetic and pain reliever that has an amazingly wide range of effectiveness on pain of many kinds.

Thursday, May 6, 2010

How to help a fuzzy brain, Part II

Yesterday I posted some links to software that I use to help me remember… stuff. I’m getting to the point where if I don’t have something telling me “it’s time”, I will totally forget. I forgot knit night last month, and I look forward to that all month long. Brain damage is a scary thing.
Anyway, here are a few more things that I find very useful:
  1. Google Calendar: I write down everything in here, including my daily chores. Need to make a phone call? It goes in the calendar. Need to remember to water the lawn? Clean the litterboxes? Change the sheets? It all goes in the calendar. You can also share the calendar with anyone who has a Gmail account, so I share mine with my husband so he can double check and remind me if I have something important coming up. You can sync this with a smart phone (I use CalendarPad on my Droid Eris), or with Outlook if you have the right plugin. It’s accessible from anywhere with a web browser. Free.
  2. OurGroceries: This is an awesome shopping list program for my phone that I discovered a few weeks ago. You can make multiple lists (Mine are currently Groceries, Automotive, Hardware store and Kitchen wish list), and add items easily to any list. You make an account, and it stores your lists in the cloud. The benefit to this is that you can share your lists with anyone you choose. I installed the program on Brian’s Droid, and when he adds stuff to the list it automatically appears on my phone. This is wonderful when I’m headed to the store when he’s at work. I just call him and tell him to look at the list and add anything he might want while I’m there. This program is available for the Android, iPhone and Blackberry. Free.
  3. MyDays: This one is for the ladies. Track your monthly cycle, including ovulation and BMT. Now when the doctor asks you to remember the date of your last period, you’ll have it on hand. Much better than writing it in a calendar, in my opinion. As far as I know, this is only available for the Android OS, but I believe there are iPhone apps that do the same thing. Free.
  4. Shazam: This one is just for fun. Don’t you hate it when a song comes on the radio, and you know who it is… but you can’t seem to drag the actual name out of your brain? Tell Shazam to listen, and it will tell you everything you need to know. Song name, artist, album, year of release… this thing is amazing. You can also buy it right from the app. Shazam is available on multiple platforms, including Android, iPhone, Blackberry, Windows and more. Free.

Again, I don’t get paid by any of these people or companies, these are tools I use every day to help keep track of my life. I find them so much easier than pen and paper, and since I always have my phone with me or I’m near my computer, I don’t forget that I have them. If you have the same problem I have, whether it’s fibro fog or another cognitive problem… give these tools a try. I hope they can help make your life a bit easier.
Feel free to add your suggestions... there was a suggestion in yesterday's comments for a pill box with an alarm. Thanks for the great idea, Leebeloola! I'll probably look into getting one of those for myself.

Greetings and Salutations!

Hello, my name is Firefairy, and I am your friendly bloggerhood admin. :-) I recently finished the ten-year ordeal that is standard before receiving a diagnosis of Fibromyalgia. Unlike the previous decade's diagnoses, the medication prescribed for this one actually improves my condition, and as one of the criteria for a Fibro diagnosis is having ruled out everything else that would make any sense, I think this one will stick.

I have spent most of the last several years incapacitated thanks to medication side effects, and am now adjusting back to my "real" level of function, aided by medication that actually does something for my symptoms. I recently took a job working part-time as a Quality Assurance monitor in a call center that is performing follow-up calls for the Census.

Unlike many of the other Chronic Bitches, I am fairly accustomed to talking about my illness. I don't really have much in the way of social filters, and I feel it is better to get anything that might make someone not want to associate with me out of the way early on in the acquaintance. I probably have fewer friends as a result, but the friends I have do not subject me to a regular litany of incomprehension and insensitivity, so I consider the trade-off a good one. There are significant disadvantages to being open about chronic illness, however, particularly when your diagnosis changes on a regular basis as the doctors work their way around to actually admitting they aren't sure what's going on. That is likely to provide topics for at least a few posts from me.

If you have any technical difficulties with this blog, you can contact me at blogger DOT firefairy AT xoxy DOT net. If you have issues with the content, please use the Comments.

Wednesday, May 5, 2010

How to help a fuzzy brain

I posted this on the Chronic Bitches forum, and my blog,  a while back, and I figured it would be appropriate for here.  
I was curious what other people use to overcome “fibro fog”, the cognitive/memory problems that come along with fibromyalgia.  I also shared my list of helpful items and software. No, I don’t get paid by any of these people, these are genuine endorsements of stuff I use every day.
It’s been really hard for me when I can’t remember anything on my grocery list, or forget to pay bills. I spend a lot of time on my computer, and I’ve found a few tools that really help.
  1. A smartphone: I have an Android phone (HTC Eris), but an iPhone will work for these tools as well. Cost: Depends on your carrier, but I pay $30 extra a month for the data service. Worth. Every. Penny.
  2. Evernote: I have this on my computer, AND on my phone. I can keep notes, grocery lists, take pictures of things I need to remember or describe, and then I can access them from anywhere I have access to a computer. Must have. Free, unless you need more storage. I don’t need more yet.
  3. PageOne Personal Productivity Assistant: This is a website that you can go to, as well as an app for your phone. Set up all your billing sites on one site, and it tracks bills, due dates, payments and spending. It will send you alerts when bills are due. I only have 3 accounts it doesn’t have, and two of those are my local small town water and trash (the other is Newegg). Free for the website. The app is free unless you want to track more than 10 accounts on your phone, then it’s only $7. I bought it just for the ability to quickly check my bank account without going through all the hassle to log in to my bank site from my phone.
  4. Patients Like Me: Website. Track your symptoms, side effects, and medications. Lovely graphs and charting, and they’ll send you an email once a week to remind you to check in. You can also print out a nice chart to bring to your doc. Free.
  5. LastPass: Password keeper. I like this one better than any one I’ve ever tried. It stores your passwords on it’s server, so you can access them from anywhere, but they’re encrypted, so they’re secure. They decrypt them on your computer, so they never have access to your passwords. Free. If you want the app for your phone, Premium is $1 a month. I use the free version at this time.

These are the things I currently use on a daily basis. Does anyone else have suggestions?

What Not to Say

I thought it'd be a good idea to kick off with a list of what not to say, gleaned from our Chronic Bitches group on Ravelry. This is obviously not a complete list, and if I have forgotten anything or mislabeled, please let me know and I will fix it. Where possible I included appropriate responses.
There is even a handy code, indicating to what illnesses these usually pertain and those who are to blame.
Fa=Often perpetrated by family
M=Mobility issues
R=Random strangers
  1. But you don’t look sick. A, Fi, Fr, R
  2. Well, if you’d just get some exercise… D, Fa, Fr, M, P, R If you can show me an exercise I can do without further injuring myself, I'll do it.
  3. You just need to take vitamins. Fr, R
  4. I’ve found this great supplement that even cures cancer…you should take it. Fr, R
  5. That kind of diagnosis is just a cop-out. ___________ doesn’t really exist. Fa, Fi, Fr, P, R
  6. You just want attention; there’s nothing wrong with you. D, Fi, Fr
  7. Well, just ignore it when it hurts. Fr, P
  8. Why don’t you take a pill for it, then? Fr
  9. You’re faking this for the insurance money/to be annoying/for attention. Fi, Fr, R
  10. Oh, that doesn’t really bother you. Fr
  11. You need to see a different doctor. Fr
  12. You're too young to have this many things wrong with you! A, D, Fi, Fr, P, R
  13. If you would just be more positive about things, you’d feel better. D, Fa, Fr
  14. Admitting you're sick is admitting defeat.
  15. You really shouldn’t joke about that. R
  16. Have you tried praying? A, D, Fa, Fi, M, R I think I will stick with my doctor's recommendations and science.
  17. It’s all in your head. D, Fi, Fr, P Damn right! It's migraines/mental health problems/fibromyalgia, where else would it be?
  18. I had a _____ (second cousin, friend of a friend’s friend’s friend, fellow gym member, etc. never anyone close) who had what you’ve got. They stopped eating __________ (evil food of the month club: gluten, dairy, chocolate, red meat ad infinitum) and were completely cured! You should try it! R
  19. You just need to lose some weight. Fa, R If you can show me an exercise I can do without further injuring myself, I'll do it. Yes, because my allergies/mental health/chronic pain are a direct result of my weight. Logic fail.
  20. I don’t believe in _________ D, Fi, Fr
  21. You learned that from your mother. D, Fa, Fr Funny, I didn't realize that diseases could be learned behaviour.
  22. You just need to gain some weight. Fa, R
  23. Hormones can affect your emotions and perspective.
  24. You’re too young to apply for disability benefits. Fr, M, P My medical condition is a better indicator of my disability than my age.
  25. You really aren’t that sick. I have patients much sicker than you are. P
  26. Have you tried holistic options? Fr Many, but that's between my doctor and me.
  27. Could it be your stress? Fa, Fr According to my doctor, it's my illness.
  28. Have you tried (insert random medication advertised in magazines/TV)? Fr, R My doctor and I explored that option when it first came out, thank you for your inexpert opinion.
  29. Have you thought about being in a trial study? That's between my doctor and me.
  30. Wow, if I were you, I don't know what I'd do. I'd probably kill myself. M Gee thanks.
  31. Have they found what's causing the problem? No, my doctor is an idiot.
  32. Have you tried hypnosis? I'm still sick, but when the phone rings I bark like a dog.
  33. Have you researched your illness? No, I have absolutely no idea what's going on and am completely clueless.
  34. Have you tried anti-depressants? Fa, Fr, R
  35. I wish I had a disability badge. Fa, Fr, R If I broke both your legs, you could.
  36. What do you do all day? Fa, Fr, R
  37. If you stopped taking that medication, then maybe you wouldn't be so ill. Fa, Fr Sorry, I'm just a little attached to living.
  38. There are people worse off than you are. A, D, Fa, Fi, Fr, M, P, R
  39. Cheer up! D, Fa, Fr If I could, I would.
  40. I’ll see you in six months. If you’re still short of breath then, I’ll see what I can do. P
  41. Boy, I’d like to be able to take early retirement. Fa, Fr, R
  42. With your education level and experience, you should be able to do something. Fa, Fi, Fr If I could, I would.
  43. Why don’t you take care of it since you don’t have anything to do–after all you’re not working. Fa, Fr
  44. If you’d think about something else, you wouldn’t notice the pain. Fa, Fi, Fr, R
  45. The pain always stops on its own eventually. Fa, Fi, Fr, R
  46. You could do things if you really wanted to. Fa, Fr, R I don't see you running any marathons, either.
  47. Sexual side effects are a small price to pay for feeling better, right? Fa, Fr, P The one thing that still works is the ability to love and be loved in return, and you want to take that away? How is that "better"?
  48. You should moisturize your skin. I know because my son had eczema as a baby.
  49. Panic attacks are just one more way to draw attention to yourself. Fa, Fr Wait... What?
  50. Well, but it’s not that bad - at least it doesn’t kill you! Fa, Fr No, but I might kill you if you ever say that again.
  51. Oh man, tell me how I can get a vest so I can sneak my dog into places too! Fa, Fr, R I'll break both your legs for you so you can.
  52. I know just how you feel! (Insert long unrelated story here). Fa, Fr, R
  53. But you can walk - you don’t need a wheelchair. Fa, Fr, M, R
  54. I would hurt too if I laid around all day and whined! Fa, Fr
  55. When are you going to be normal again? Fa, Fr Normal is just a setting on the washing machine. It has no application to human beings.
  56. You should be grateful I work and can pay your disability benefits. It’s people like me who make it so you don’t have to have a real job. Fa, Fr, R You think that I would prefer to be housebound by (debilitating condition) rather than have a job outside of the home?
  57. You should count your lucky stars that you are healthy and able-bodied instead of a healther-than-thou asshat.
  58. Just drink some water, you are probably dehydrated.
  59. You don’t look blind. R
  60. Why do you hurt? What did you do to yourself? Fa, Fr
  61. What do you mean you can’t do x?
And if you find yourself at a loss for words because of some idiot, just kick them in the taint.
Here are a couple of other lists posted by Chronic Bitches:

Hi, my name is SLiver of Jade and I will be your hostess

Well, at least one of them, anyway. When I have internet access (which can be sporadic), I'm over at Witchy Woman. The listing at the top of my blog can give you a good idea of my vast interests over there. For the lazy, I am a dirty, filthy, hippy liberal Pagan.
As a result of social conventions, I, like so many, am unaccustomed to talking about my health. There will undoubtedly be more on this to come. I have dissociation, borderline personality disorder, possible anxiety, un-diagnosed respiratory issues (various doctors have asked me, "How on Earth do you breathe?!"), post-traumatic stress disorder, screwed up feet and ankles that have mostly been fixed, and depression. The jury's still out on the anxiety and exact flavour of depression.
What am I going to contribute? You're just going to have to wait and see.


I'm Kaessa in the online world, and have been for quite some time now. My chronic-ness includes a heavy dose of Fibromyalgia, possible Chronic Fatigue Syndrome, hypothyroidism, hypoglycemia, arthritis, sleep disorders, and probably a few random other things that I can't remember at the moment.

I blog semi-regularly at my own blog, "My knitting has gone to the dogs...", and my usual topics include everything from chronic pain to home improvement to atheism and politics. There is also some knitting involved, but on a sporadic basis.

I'm not sure what I'll be contributing here, but you can be assured it will be quite random.

Tuesday, May 4, 2010


I go by Shoveling Ferret in my online life, just because I like the name.  It reflects my archaeological training and my ferret-like nature.
My chronic-ness is Hashimoto's thyroiditis, undifferentiated connective tissue disease with a side of arthritis in the hands, sleep apnea, chronic fatigue syndrome, delayed sleep phase disorder and, brand new to my collection and a diagnosis that took 2 years to arrive at - Functional Movement Disorder.  I have involuntary movements and ataxia (trouble walking) that led to testing for MS, Huntington's Disease, evaluation for various other genetic disorders, cancer, and various other degenerative conditions.  A consultation with a movement disorder expert recently led to the diagnosis of Functional Movement Disorder - essentially a condition in which a patient exhibits functional neurological signs/deficits such as involuntary movement, tremors, ataxia, etc. without a clear underlying cause.
Some other terms include hysteria, Conversion Disorder, Psychogenic Movement Disorder, and Somatoform Disorder. 
Unfortunately, those terms don't really take into account the full picture of the disorder which seems not to be caused by purely psychological factors or lack of insight into psychological conflict or psycho-social stress.  Instead, the disorder seems to be related to a combination of medical, psychological, and social factors.  There is evidence of changes in the way the brain functions (which is distinct from differences in brain structure or evidence of disease or degeneration).
In any case, it's a very complicated condition fraught with a lot of disagreement over models of causation, treatment, categorization, etc.  Happy fun times.

Amazingly, dealing with chronic "organic" illness and its associated suck has also tossed some situational depression my way, so I deal with that as well.

Given my recent Dx of Functional Movement Disorder, which is equated by some with Conversion Disorder and other disorders that are traditionally regarded as more "psychological" or "in the mind" than "organic" I have an interest in concepts of mind and body in medicine (and a bit of a grudge with Rene Descartes for saddling us with the mind/body division that contributes to difficulties in describing, understanding, and treating issues like Functional Disorders). 

I blog semi-regularly on my own site (link in the sidebar) about my health, crafting, Egyptology and other bits of randomness that strike my fancy.

I'm hoping this blog as well as my own will be a good place to share some musings on Functional Disorders and the intersection of psych and neurology as well as a resource for other people dealing with issues similar to my own and to help educate people about these types of disorders.

Hi from the Census Bitch.

Morning, afternoon, evening, happy ChrismaHanaKwanzaka, ya'll.

Chronic Census Bitch here, with musings from the Dept of Commerce and the humid-ass circle of hell that is my home. I'm an asthmatic, arthritic, and just an all-around ouchy bitch.(I also have minor stroke damage, synesthesia, a shattered tailbone, and unidentified pain issues, but that will all come out later.) I'm 24, and working as a Census Enumerator/Crew Leader Assistant for the NRFU operation of the 2010 US Census. Hence the name, of course.

On occasion, I have to carry a cane, and find myself covered with icy hot patches to interrupt nerve hiccups throughout the day or night. Otherwise, my disabilities,disorders, etc. are virtually invisible. On good days, that allows me to come and go unnoticed. On bad days, I feel like people don't believe I'm even a Chronic Bitch. Eventually, somebody's getting albuterol in the eyes and a cane up the ass.

This is the first week on the streets for the US Census, so the crazy stories are yet to come.

Over and Out,

A Winter Sunrise

Sunday, May 2, 2010


Welcome to Like You're Listening, the tentatively-named blog of the Chronic Bitches, a group of chronically-ill yarn crafters who nonetheless refuse to become bland, stereotypical sick people. Many of our discussions in the forum on Ravelry lead to discoveries and information that would make wonderful blog posts, so... now we have a blog.

Please note that many topics and manners of delivery may be Not Safe For Work, unsuitable for children, or otherwise require a bit of maturity and a sense of humor to cope with. If you don't find the offerings to your liking, feel free to hit the Home button on your browser and return to greener internet pastures.

Topics may include:
  • Medicine as it is practiced in our various locales
  • Chronic and acute illness and its effect on our lives and those around us
  • Sensitivity vs. Political Correctness (is there a line between them, and where?)
  • Sex and Relationships (with or without reference to illness)
  • Anything we find amusing, frustrating, or otherwise worthy of comment