Why we believe

So, I have been thinking a lot on faith. I waver between moderate atheism and a sort of Neopagan/New Age spirituality (my mother had me Christened Episcopal but is religiously New Age, while my father is nominally Baptist and the strongest believer in my family; I attended an Episcopal church as a child and Presbyterian and Salvation Army churches in adolescence and early adulthood); I usually believe there are some sort of spirits or impressions of the dead in the world; experiences of mine and of those whose minds I generally trust at least suggest it to me, and the nature of such observances belies scientific reproducibility. When asked, I affirm that my religion and creed is knowledge in and of all things with a heavy dose of open-mindedness; I believe in learning and acquiring knowledge above all concepts of God. If we all truly knew each other, maybe we wouldn't need to be afraid of each other. People don't want to know, though, because they fear that they will find within themselves aspects of that which they believe is away from God. They need their concepts of God because they have been taught to fear, that freedom is only in believing and in that one concept of the hereafter and the spiritual.

I thought I didn't get it, but then, an Accu-SPINA™ ad came on. My back and neck have been hurting badly. Nothing helps. Well, actually, wearing a full corset helps slightly with the mid-back pain, but I need someone to help me get it on. Any other help dulls my mind more than is acceptable or makes me sleep; nothing I can take when I need to be functional helps. So, anyway, I saw the chiropractic ad. First, a chiropractor screwed up my neck pretty badly when I was ten or so; my parents took me to anyone who might help when I suffered whiplash after a school bus accident. The best help then was biofeedback and strong Motrin; for milder pain, I still get some help from meditation, though anti-inflammatories are unfortunately a path closed to me now. Secondly, I've had a couple other close friends and relatives messed up by chiropractic treatment, and thirdly, the time I did go back to a chiropractor as an adult, the genius kept using a percussion hammer on/near FMS tender points. In general, the evidence I've seen shows that most chiropractic medicine is useless at best and dangerous quackery at worst. This abstract suggests that the evidence for spinal decompression therapy specifically is skimpy.

I know all this; the procedure would not be covered by Tricare, so would cost a lot for little to no likely benefit. Still, when I saw the ad, I thought, "you know, I should look into that." Then I thought about it; as the logical part of my brain kicked in, I had a minor epiphany. I wanted badly to believe it might work, because while most of the time I get by because I have accepted that I will always be in pain and resolved to do my best anyway, sometimes, it's scary. I want to believe in anything that will make things better.

Maybe that's why so many of us want to believe in other things, too. Because the idea of nothing is scary, and because when we face death and sorrow, it hurts, and we need to believe that there's Something out there that makes it better.

New word

I went to Denali yesterday, and I'm rather the worse for wear today. I'll be OK, and Mom had a great birthday. Her cake was a day late--it's still cooling and we have not eaten it yet.

I am starting a campaign to add a definition to a word. Pass it on; if we all start using it, maybe we can get it in the language officially.

Giggle. gig·gle, noun. A group of three or more adolescent girls.

Come on, who's with me?

Monday Meme

The rules: Things I've done are highlighted in bold, and I've added one to the end.

via No Cookies For Me

01. Bought everyone in the pub a drink
02. Swam with wild dolphins
03. Climbed a mountain A small mountain. And I didn't make it all the way to the top. But I was climbing on it.
04. Taken a Ferrari for a test drive
05. Been inside the Great Pyramid
06. Held a tarantula
07. Taken a candlelit bath with someone.
08. Said “I love you” and meant it.
09. Hugged a tree.
10. Done a striptease
11. Bungee jumped
12. Visited Paris
13. Watched a lightning storm at sea
14. Stayed up all night long and watched the sun rise
15. Seen the Northern Lights
16. Gone to a huge sports game.
17. Walked the stairs to the top of the leaning Tower of Pisa
18. Grown and eaten your own vegetables.
19. Touched an iceberg
20. Slept under the stars
21. Changed a baby’s diaper
22. Taken a trip in a hot air balloon
23. Watched a meteor shower
24. Gotten drunk on champagne
25. Given more than you can afford to charity
26. Looked up at the night sky through a telescope
27. Had an uncontrollable giggling fit at the worst possible moment
28. Had a food fight
29. Bet on a winning horse
30. Taken a sick day when you’re not ill
31. Asked out a stranger
32. Had a snowball fight
33. Photocopied your bottom on the office photocopier
34. Screamed as loudly as you possibly can
35. Held a lamb
36. Enacted a favorite fantasy
37. Taken a midnight skinny dip
38. Taken an ice cold bath
39. Had a meaningful conversation with a beggar
40. Seen a total eclipse
41. Ridden a roller coaster
42. Hit a home run
43. Fit three weeks miraculously into three days
44. Danced like a fool and not cared who was looking
45. Adopted an accent for an entire day
46. Visited the birthplace of your ancestors
47. Actually felt happy about your life, even for just a moment
48. Had two hard drives for your computer
49. Visited all 50 states
50. Loved your job for all accounts
51. Taken care of someone who was shit faced
52. Had enough money to be truly satisfied
53. Had amazing friends
54. Danced with a stranger in a foreign country
55. Watched wild whales
56. Stolen a sign
57. Backpacked in Europe
58. Taken a road-trip
59. Rock climbing
60. Lied to foreign government’s official in that country to avoid notice
61. Midnight walk on the beach
62. Sky diving
63. Visited Ireland
64. Been heartbroken longer then you were actually in love
65. In a restaurant, sat at a stranger’s table and had a meal with them
66. Visited Japan
67. Bench pressed your own weight
68. Milked a cow
69. Alphabetized your records (and my books, and my movies, and my video games, and...)
70. Pretended to be a superhero
71. Sung karaoke
72. Lounged around in bed all day
73. Posed nude in front of strangers
74. Scuba diving
75. Got it on to “Let’s Get It On” by Marvin Gaye
76. Kissed in the rain
77. Played in the mud
78. Played in the rain
79. Gone to a drive-in theatre
80. Done something you should regret, but don’t regret it (I don't believe we "should" regret anything that we don't)
81. Visited the Great Wall of China
82. Discovered that someone who’s not supposed to have known about your blog has discovered your blog
83. Dropped Windows in favour of something better
84. Started a business
85. Fallen in love and not had your heart broken
86. Toured ancient sites
87. Taken a martial arts class
88. Sword fought for the honour of a woman
89. Played D&D for more than 6 hours straight
90. Gotten married
91. Been in a movie
92. Crashed a party
93. Loved someone you shouldn’t have
94. Kissed someone so passionately it made them dizzy
95. Gotten divorced
96. Had sex at the office
97. Gone without food for 5 days
98. Made cookies from scratch
99. Won first prize in a costume contest
100. Ridden a gondola in Venice
101. Gotten a tattoo
102. Found that the texture of some materials can turn you on
103. Rafted the Snake River
104. Been on television news programs as an “expert”
105. Got flowers for no reason
106. Masturbated in a public place
107. Got so drunk you don’t remember anything (not in a very long time!!)
108. Been addicted to some form of illegal drug
109. Performed on stage
110. Been to Las Vegas
111. Recorded music (In high school for a friend's album. It was horrible, but it happened).
112. Eaten shark (and gator, and snake, and boar, and buffalo, and bear, and grasshopper, and eel)
113. Had a one-night stand
114. Gone to Thailand
115. Seen Siouxsie live
116. Bought a house
117. Been in a combat zone
118. Buried one/both of your parents
119. Shaved or waxed your pubic hair off
120. Been on a cruise ship
121. Spoken more than one language fluently
122. Gotten into a fight while attempting to defend someone
123. Bounced a check
124. Performed in Rocky Horror
125. Read - and understood - your credit report
126. Raised children
127. Recently bought and played with a favourite childhood toy
128. Followed your favourite band/singer on tour
129. Created and named your own constellation of stars
130. Taken an exotic bicycle tour in a foreign country
131. Found out something significant that your ancestors did
132. Called or written your Member of Congress
133. Had them write back
134. Picked up and moved to another city to just start over
135. … more than once?
136. Walked the Golden Gate Bridge
137. Sang loudly in the car, and didn’t stop when you knew someone was looking
138. Had an abortion or your female partner did
139. Had plastic surgery
140. Survived an accident that you shouldn’t have survived
141. Written articles for a large publication
142. Lost over 100 pounds
143. Held someone while they were having a flashback
144. Piloted an airplane
145. Petted a stingray
146. Broken someone’s heart
147. Helped an animal give birth
148. Been fired or laid off from a job
149. Won money on a TV game show
150. Broken a bone
151. Killed a human being
152. Gone on an African photo safari
153. Ridden a motorcycle (Ridden? Yes. Driven? No.)
154. Driven any land vehicle at a speed of greater than 100mph
155. Had a body part of yours below the neck pierced
156. Fired a rifle, shotgun, or pistol
157. Eaten mushrooms that were gathered in the wild
158. Ridden a horse
159. Had major surgery
160. Had sex on a moving train
161. Had a snake as a pet
162. Hiked to the bottom of the Grand Canyon
163. Slept through an entire flight: takeoff, flight, and landing
164. Slept for more than 30 hours over the course of 48 hours
165. Visited more foreign countries than US states
166. Visited all 7 continents
167. Taken a canoe trip that lasted more than 2 days
168. Eaten kangaroo meat
169. Fallen in love at an ancient Mayan burial ground
170. Been a sperm or egg donor
171. Eaten sushi
172. Had your picture in the newspaper
173. Had 2 (or more) healthy romantic relationships for over a year in your lifetime
174. Changed someone’s mind about something you care deeply about
175. Gotten someone fired for their actions
176. Gone back to school
177. Parasailed
178. Changed your name
179. Petted a cockroach
180. Eaten fried green tomatoes
181. Read The Iliad
182. Selected one “important” author who you missed in school, and read
183. Dined in a restaurant and stolen silverware, plates, cups because your apartment needed them
184. … and gotten 86′ed from the restaurant because you did it so many times, they figured out it was you
185. Taught yourself art from scratch
186. Killed and prepared an animal for eating
187. Apologized to someone years after inflicting the hurt
188. Skipped all your school reunions (all one of them so far)
189. Communicated with someone without sharing a common spoken language
190. Been elected to public office
191. Written your own computer language
192. Thought to yourself that you’re living your dream
193. Had to put someone you love into hospice care
194. Built your own PC from parts
195. Sold your own artwork to someone who didn’t know you
196. Had a booth at a street fair
197. Dyed your hair
198. Been a DJ
199. Found out someone was going to dump you via LiveJournal
200. Written your own role playing game
201. Been arrested
202. Written/filmed/produced your own pornographic material
203. Dated someone with a page on IMDB.
204. Been in, or married to someone in, the military

Blue day

Today, I found out that DH will be home up to a week later than we'd planned. I am hoping he will make it by 13 September anyway; I made us appointments to have tattoos that weekend as something to do together (in separate rooms with different artists, but it's still a shared experience). I'll have to back them up a couple weeks if it turns out otherwise.

I got angry, and I am afraid that I shared some of that with him, though I know he gets as angry and frustrated as I. The thing is that I feel the need to prove myself at work and a couple weeks of needing a late-night sitter in May proved to me that that won't be an option again; I'll have to limit my schedule far more than I would like. I can only hope that offering to work later weekend shifts, as I have a friend who will help me then, will make up for it.

After I was angry, I was just down. I had trouble being motivated after that today; I didn't work out or take the trash to the recycling center (naturally, the pool will not reopen until at least the end of the month now, and they are not sure about then). I eventually got all my work done for my data class (a lab and a quiz; only got an 87% on the quiz, but the lab will be fine and is worth more points).

I did get three boxes today. One had Chuck's Canadian chips and my Raspberry Puffs; one had a bunch of Star Wars books and some DVDs Chuck sent me; the third had my corsets. One is a proper corset, but I can't do up the eye-hooks; the other is super-comfortable like a swimsuit, and I can live with it. I don't think the help for my back is as much as I would have desired, but it's better than the brassiere.

I wanted to get in a session of yoga or stretching before bed, but I am not feeling up to it. I think I will take a short walk.

Sick

Last week, I picked up some kind of bug. I went to the doc on Tuesday morning to talk about some things I already discussed here, and around the same time, I started to get that tickle in the back of my throat that meant I was getting some form of upper respiratory virus. I generally work with bugs like that by ignoring them and refusing to get sick; usually I can just keep going. Several days of intermittent fevers and no sleep because I couldn't lie down (I got a lot of reading done last week) without feeling like the Blob had taken up residence in my head, which made it rather difficult to sleep, took its toll; by the weekend, I was sleeping in my chair and dizzy nearly to the point of passing out from just walking around.

I gave up and told them I would not be in Sunday, and that I'd get in for sick call this morning if it wasn't better.

I left DH a message to send me messages so my phone would wake me this morning--you call at 0730 or you don't get in for sick call. When I didn't answer the messages, he called; we usually IM and he spends his morale calls on his daughter. So, one of the few times I can talk to him, I can't talk; I haven't the wind to hold up a conversation.

Anyway, I got in this morning. Now I'm on the industrial strength cough syrup with codeine, guaifenesin, pseudoephedrine, and something else, as well as antibiotics and saline nasal spray. It's a little sedating, and limits me being able to take pain medication--I can't do much more than get up and stretch right now, so my neck and back are worse than usual. I did order some corsets today (not the kind with the boning--just bras that support all the way to the waist, basically), because I found out that the Tricare office won't put in the consult with the surgeon my doctor said they would; I have to wait for a consult to open at Traviss AFB (between SF and Sacramento), which could take up to a year, and I can't imagine continuing like this that long; a regular back brace helps but gets in the way of other clothing.

I am hoping to make it to work tomorrow. The house is a mess, and we're supposed to have a Harry Potter marathon here on Friday. Hopefully the girls do not hold the condition of the house against me. I got my Excel labs done, so I just have to get three short essays and a quiz in on the state of modern business and technology before then.

The Chicago Tribune on blogs

On Reddit today, I ran across this gem of an article: "Blah, blah, blog, blog." News to Chicago Tribune: many bloggers are literate, care about grammar and correct expression in writing, and have something interesting to say. Is it self-important to consider that the rest of the world wants to read everything we have to say? It's certainly possible, but it is more likely that most bloggers cater to a niche and are aware that few will read what they write. More than half the people whom I am aware of having read my blog are friends and went looking for my online presence or followed other links from me back here, have visited exactly once, or most likely, both. Bloggers blog for a number of reasons, in fact. Most of what I write here is meant to inform. If my friends with FMS know that my blog exists as a place for me to share information I find, if one of them gets one piece of new information to take back to the doctor, then I have served a purpose here that has little to do with my ego or any sense that the fact that I have been watching stupid movies today while sick may be important to anyone's life.

However, if people do choose to communicate as the author assumes, what of it? The truth is, since my now-husband deployed to Saudi Arabia years ago, we have communicated online with a kind of shorthand. We dispense with most forms of "to be" in our conversations, for example ("I sick. How you?"), creating a kind of caveman language just for that shared space. The younger Gen-Ys have spent their entire lives creating shared cyberspaces. That they have their own shorthands for everything, replete with emoticons and full of shorthands and slang, does not mean they do not know how to communicate face to face or don't deal with real people. It is more analogous to my own middle school years, when many girls tended to write each other notes instead of paying attention during class. I remember when a teacher noticed a note to a friend of mine that started with "'Sup?" He hooted and laughed, asking if her friend was inviting her to dinner. The teacher in question was a lot of fun as well as being extremely good-looking (and writing this, by the by, inspired me to look him up, but I will not mention him here by name in order to not embarrass either of us).

To bring this back on topic, I would like to include something I found last night. For the sleepless out there, check out Baby to Sleep. If white noise helps you rest, meditate, or sleep, then this may be a great website for you.

It's been a long week.

I had an extra day off last week because of the 4th being a paid holiday, and I really meant to get more done around the house, but I have just been exhausted. Last night when my friend went home, I started to feel sick and unbearably sad for no real reason, but it was late at night and I went to bed without finishing watching The Witches. It's OK; I have a feeling they probably didn't end the movie like they ended the book. This morning, I feel better, but everything hurts and my fingers are slow and thick-feeling.

I got some new phones this week--we're upgraded to smartphones, though his does not have the Blackberry package until he gets home. There's no point in doing more than the family talk/text plan for now. When I was transferring contacts, I tried to let as many people as I could know about the new number, and in the process found out that one friend with two kids was homeless and living in a tent. They need to get to another state where they have both medical help and a place to stay; I sent what I could and will hope for the best for them.

The new class term starts again tomorrow. The next break will be December. For now, I am trying to start making to-do lists and to get one thing done in or around the house on each day off besides the ongoing chores. Hopefully I can keep it in better state than I have been doing, but sometimes, you do what you can and let the rest go.

Hopeline/1-800-Suicide

I thought this was important enough to share. If you don't have money to send, help by spreading the word.

Weekend Updates (Personal)

The other day, driving home, there was some strange cloud cover. One of the clouds seemed to reach for the ground, pulling away from the cloud bank like taffy. The sun, invisible behind the cloud from where I sat, turned the column into an opaque rainbow. As Kermit says, "rainbows are... only illusions," but this one seemed more real and solid than others. A less pragmatic person might have seen it as a sign of some sort; it was lovely for itself without any portent.

A couple managers found my blog this week (separately and coincidentally). One of them suggested I get a medical note and then could wear my Crocs. I remembered to do that when I called to make an appointment to discuss the possible benefits (and drawbacks) of a reduction. I mentioned that on Reddit and started a controversy I didn't expect. I try to be matter of fact, but the truth is, I get defensive about all this online as well as when dealing with medical professionals. I don't want to be judged by my conditions or other people's assumptions about the ways I deal with them, when all I am doing is what anyone is doing: trying to do my best to get through this life as well as I can.

My leg is finally a little better after the procedure--I have an ache, but not the same level of stiffness and limping on that side. The shoes made a difference, too, I think. Today was movie day again, but we walked to the store for some snacks so we'd at least not totally vegetate for the day. Lord of the Rings: The Complete Extended Trilogy is an interesting marathon if you're a bunch of geek girls who are willing to make slash-fic jokes about the characters. I'm still behind on housework from being a little less mobile than I would have liked this week, but I have Monday, Wednesday, and Friday off this next week, so I will try to catch up on some tidying-up and laundry then.

Some days I'm not feeling it.

The end of last week got weird. I had a lot of calls, a lot of appointments, and a lot of things happening at once (of which nothing has come yet, but that's not the point). One was the patient advocate getting involved. I emailed a history and haven't heard back yet.

I went to the pain clinic dr. on Friday. He did do a shot in L-5:S-1, and to Triwest's credit, it was approved by this morning. I wasn't expecting a shot without Tricare preapproval, so I had to go get things for my husband afterward. By the time I got home, I was pretty swollen and bruised. I still have a pretty serious limp.

I have a new casual diagnosis of osteoarthritis in my fingers. The only "new" option he could suggest was the Black-Box-Warning-Labeled Celebrex, which I am willing to try if a doctor really wants to go there, but with my history of NSAID allergies, I can't even try it when there's no other adult home unless they'd like to monitor me in a clinical setting. What do you do for this without meds? Ice doesn't help with stiffness--it can cause it--but I've been using ice water hand baths when swelling/pain get too bad for some very temporary relief.

Last night I started crying for no really good reason but that I missed my guys and I was in pain and tired and lonely for a bit. Today I'm still feeling rather down.

Like I said, I am still limping, but I did walk up to the post office and then mow the lawn just ahead of it starting to sprinkle out. I could hear but not see the Thunderbirds practicing for the air show all day, but they seem to be done now. Mowing the lawn gives me both a sense of sadness/loss and a sense of accomplishment; on one hand, I am getting things done, and on the other, I hate mowing down wildflowers, which is all dandelions really are. They're pretty and sunny and yellow; what more can you ask? And I think I said before that the better option environmentally would be to leave lawns alone to grow; we'd save a lot of gas nationwide, cut tons of greenhouse gas emissions, and have more naturally-growing plants recycling the air. But rules are rules, you know, so mow I do.

I have a lot more to do here and Friday is movie day again (Lord of the Rings marathon!). Hopefully I'll get this place in shape by then.

Moving

Today's physical activity was yard work. I mowed front and back, considering that if we could all just let our lawns grow, we'd reduce air pollution and help the Earth by the grass's greater ability to recycle the air and pull out excessive carbon. Then, I dug holes around the back fence, filled in other holes, and planted sunflower seeds in the little holes and filled them back in with topsoil and potting soil. I spent about an hour sweating out in the sun (and another half hour hauling trash to the recycling center/trash area). I try to get out and move around on my days off, even though I haven't been able to get myself going fast enough to get to the gym on my work days the last few weeks.

I have an appointment at the pain clinic next week. I don't think the approval in with the insurance will let him give me the lower back shot next week; hopefully it will not take long to get a new appointment for one, as I am starting to have a lot of difficulty walking and driving again. I had to adjust the shoes I was wearing for work. If anyone knows any shoes like Crocs or Okabashis with basically a light foam sole, but with a professional-looking upper, please let me know! It would really help me out.

Anyway, keep on moving, everyone!

Thursday musings

As I got on the highway heading home today, a black Mustang with silver racing stripes got right on my tail. I got over and let the guys by. They were cute and trying to dare me to race them, and I was tempted for a moment but let them pass by. I'm too scared to get a ticket to really let fly.

I castigated myself for a moment for cowardice, then remembered that I had to get some groceries on the way home--just a couple bits--and started mentally composing my shopping list, and singing along to the radio, and thinking about what I need to tell the doctor in two weeks. I'm thinking I will need a shot in my lower back at least; it's getting hard to drive again as that nerve flares up.

The weather was odd today; I'd be in bright sunshine and it would be pouring rain, then under the black clouds it was gloomy but dry.

Anyway, I rounded the bend to North Pole and saw flashing police-car lights. I got over to the left lane and checked my speed--not excessive, though I did slow down a little anyway--then, I realized that the car the policeman had stopped was that same Mustang. Sorry, guys; sometimes, slow and steady does win it.

Oh, hey, looks like Vista SP1 is out. I have some major finance homework to finish tomorrow. Guess I'd better update and get some sleep so I'll be fresh for homework in the morning.

Pains in the something or other

So, yesterday, I walked to the gym. First, the parking lot is under construction, and secondly, I might as well walk, it's only about a mile. Got there, water aerobics were cancelled. I dragged myself out of bed at 0700 for what, now?

Later, I walked to the shopette and back to get some milk and a couple bits, since the commissary is closed on Monday. By last night, that twinge in my lower back was back, and I've had trouble walking today (by which I mean I have a pronounced limp). Called for a referral to the pain clinic, hopefully it won't get too bad before I can get a cortisone shot. I can mostly deal with pain, but it gets hard to drive with that particular pain--the nerve gets all buggered up and my leg doesn't work right. I don't know if it was just "time" for it to flare up, or if I caused it walking somehow. If so, it's got to be a terrain problem; I walk all day at work without screwing myself up.

Anyway, my hubby is now convinced that I need a breast reduction. A lot of the pain I get is in my shoulders and just below the bra strap line. And somehow, in losing weight over the past year I managed to get from 38DD to 36DDD. Well, it's still not as bad as when I was nursing--after a year of that, I was about two cup sizes bigger than this. Anyone have any experience with that? Surgery makes me nervous, seriously. Plus, I sort of identify as being large-breasted. How much would they take off for something like that?

Vacation Ramble

I'm off this week. My mother is in town, and I hadn't seen her in two years. My neck and hands are having bad weeks for swelling and pain--I should call tomorrow and get a referral to the pain clinic for a cortisone shot in my neck where that disc is bad.

So, anyway, I still need to do all my schoolwork for the week. My boss called this morning to let me know that there was a holiday next week he'd forgotten to schedule, so I told him I'd just work the full week and take 8 hours holiday pay as a bonus. We went to the Gold Dredge today, which was really interesting, and stopped at the Pipeline on the way up.

Now, we're watching Mr. Magorium's Wonder Emporium, so I made a decision: when I'm an accountant, I'm going to have a business card made up with the title "Counting Mutant."

Shoes

I must confess, I've never been fond of wearing shoes. I feel better overall and in my feet without, and I'm not convinced of the shoe industry's rhetoric about needing supportive shoes; we've evolved to walk barefoot or with leather moccasins that mold to the feet but are only a protective covering. Surely, doing so does not throw us out of alignment? The flip side of that coin is that we also evolved to walk on ground that was softer to our feet and had some give to it. Concrete sidewalks and hard floors are also of the modern world.

Last week, the day DH left, we went to buy him some walking shoes. The guy at the Athlete's Foot (it's a terrible name for a shoe chain, isn't it?) was very passionate about shoes. His spiel was quite long. But since then, I've been thinking that I should get some better insoles. Actually, I feel better overall when I use the Profoot 2 oz. Miracle insoles; I may just need some new ones, rather than some different ones. Still, since I have to wear shoes, I know that the shoes I wear make a difference in how I feel. The best shoes I've found are Okabashi sandals; real Crocs aren't bad, but watch for knockoffs. But if there are cute shoes you're just dying to wear, or if you can't manage new shoes in your budget right now, try to invest in some decent insoles. It might make a world of difference to you.

I will, however, probably go to Athlete's Foot in a couple weeks to get some sneakers and insoles for walking. Our water aerobics class will be cancelled for the summer while they repair and renovate the pool at the gym, so we're going to meet and walk instead. I have some cheap gym shoes, which are OK for using the elliptical or bike at the gym, but I should probably get some good walking shoes. I thought about getting shoes I could wear to work while I was there, but they only appeared to sell dress shoes for men.

I missed water aerobics today, because I had to be at work early. I did a half-hour on the bike, instead. I wish the seat could be set shorter than ours can--I have to sit at the edge of the seat--but it's still very handy to have as a backup plan.

Good and Bad

I've been in flare this week regarding the pain that is inflammatory, particularly in my fingers and my neck. Still, I've had some OK days when not discussing pain issues. Last weekend, we saw Iron Man (like half the people in this country, right?). My son LOVED it. I loved it, if less. Sometimes, feeling good about something outside makes a day OK. We basically had a party after, playing Scene It and some board games. I can't drink much any more, though some of my friends drank quite a bit (I nursed a banana bread beer, which was pretty good on my stomach, which doesn't tolerate--well, anything much, actually; IBS has taken over my life even more than the FMS, I guess).

Hell is other people...

If you're not feeling sensitive, read this.

I couldn't respond. I'm shaking with anger. Never mind the pain people live with on a daily basis. Never mind that addiction is virtually unknown among people who are actually in pain. We have "AngryPharmacist"s complaining that patients use it as an excuse to take pain medicine--taking pain medicine makes me vomit at least once every couple weeks, but obviously, I'm enjoying the dizziness and nausea because of some theoretical high, and then we have some nurse bitching that the only real "sufferer" she's known must have been suffering because she didn't take real pain medicine, managing with massage and "an occasional Advil."

I self-treated with Advil for a good decade before that allergy took out an entire class of pain medicine. I have obvious inflammation in major areas of my body, and doctors who hear about the pain will dismiss other real issues (the muscle pain is worst? OK, we won't treat the cervical disc disease for now, then) because they'll attribute everything to FMS--who cares if my fingers are stiff and swollen and crack when I use my hands? Obviously, since I have been independently diagnosed with this several times, I made up having pain all over so that I could get Flexeril I can take only at bedtime because it renders me incapable of functioning at all for several hours.

"Are you in any pain today?"

It's such an innocuous question, isn't it? "Are you in any pain today [or "right now"]?" You hear it every time you go to the doctor, or at least I do. I can't remember not being in pain. It's been years if there ever was a time. Right now, my hands hurt, my neck and back hurt, and I have a vague, all-over ache. On top of that, I have a spring cold and/or allergies that have caused a sore throat. A couple hours ago, when the intake nurse at the clinic here asked me if I had any pain right then, all I could say was "no more than usual." Actually, it hurts like hell to walk on my right foot, but as I wasn't walking at the time, it was fine (and it was reasonably OK walking with the surgical padding, anyway). (As a side note, it wasn't a wart at all, thank the gods; just a very nasty splinter that my immune system had pretty much managed to destroy, but there was a pocket left, around which was a great deal of inflammation that made it hurt to walk. I am more than pleased--no liquid nitrogen + no strange skin viruses = happy Jack. To be honest, I can watch surgery more easily than I can deal with the thought of certain skin conditions; warts and ants squick me out seriously).

Anyway, what does a chronic pain patient say to "are you in pain today?" For a checkup or a visit related to the chronic condition, the truth is relevant, but for a specific, acute problem, don't the other pains cloud the issue?

In what other ways do Fibromyalgia and other chronic conditions get in the way of treatment? We don't always respond the same way to medications or treatments; physical therapy and chiropractic care can either do wonders or backfire severely. Doctors may shy away from us entirely, or overprescribe varying protocols and cause medication interactions or overdoses. And gods forbid we go into an office having done our homework or research; in my experience, most doctors hate prepared patients (the good ones don't).

Post a comment below on whether you've ever had pain cloud the issue when you needed a specific problem addressed by your medical provider.

Sacred

Edit: It's not a wart--just a nasty splinter and an overreacting immune system.

So, I have a plantar wart. I had an HPV infection of this type over 20 years ago--my sister and I had warts on our toes, having been infected at the swimming pool by my grandmother's house. Anyway, this time the pool may have been involved again; at any rate, that's where the symptoms started. I thought a rock or splinter may have become embedded in my foot, but when after 3 days it was clear that it wasn't behaving as a splinter (and it hurt like mad to walk, being on the exact spot in the middle of my heel that bears most of my weight when standing or walking), I went to have it looked at. Naturally, the clinic is short providers, so I had to go to urgent care in town; by the time they diagnosed it but couldn't treat it, it was too late for me to get a referral from the clinic, so I have to wait until Monday to get treatment in the works.

The genius doctor assured me that this kind was not contagious or transmissible, but of course, a quick Google assures me that it can be, even if not extremely so. (actually, that link suggests to me that the pool is a likely culprit). Anyway, because it is in a spot that is causing my whole heel to become irritated, I was told that I was under no circumstances to do water aerobics until I get this treated, and I should stay off it as much as possible. Since I work on my feet, that wasn't an option; I asked what else I could do. I have to pad the area as well as possible--this means surgical pads and tape, then thick padded socks, then insoles in my shoes.

I'm generally known for my awesome funky socks. I'm used to new things going wrong with me, well, pretty much all the time. But man, padded, diabetics' socks? Don't mess with my socks. Some things are sacred.

To hide, or not to hide?

As a person with an invisible disability, it can be frustrating if not infuriating to try to explain what's wrong, to feel at your very worst, and to hear "but you look fine!" Almost as frustrating is the hopeful, well-meaning acquaintance who remarks, "you look good/better today." It's enough that sometimes, it doesn't seem worth it to try to explain.

How do we deal with that frustration? One way is to resolve to "look fine" all the time, and never even mention that we're ill. If we need a little more rest to get things done, or are a little slower sometimes, so be it. Of course, this can cause problems when we hit those periods where it's obvious to all and sundry that there's something wrong with our bodies.

Another way to deal with it is to give in and stop making any effort to hide how we're feeling. One down side to this is that we're seen as hypochondriacs and whiners. Another is that it's boring. Being ill becomes our one focus.

A decent middle ground is to not make it a topic, but to be honest with people as you start to know and trust them enough to converse with them personally. Generally, people are understanding and won't make a big deal of it if you don't. My "fallback" middle ground is to make a joke of FMS and arthritis--"this is all my Fibromyalgic ass can take right now."

What do you do, or say? Who around you knows you have Fibromyalgia?

Writing, art

I wrote a rap earlier, and I have no idea why. I can't rap to save my life. I sound like a white girl from the suburbs trying to rap (I'm actually not from the suburbs, but my family isn't nearly as, err, urban as the area of Toronto that was my first home).

I'm doing badly this week with pain all over. I managed to convince the doctor to give me Ultram, but somehow, he's convinced that working on one type of pain at a time is the answer, so I did not get the cortisone shot in my neck that I also badly needed on the grounds that the pain in my back is worse. What's that about?

Anyway, like I said, I'm doing badly. I'm a straight A student and pulled Cs or Ds on my quizzes this week. Nearing the end of the class, this is not what I needed. But just getting through work with a back brace and a wrist brace and a pronounced limp is all I can manage, and not even that without crying. I'm not up to my standard in any sense, and the best advice I can get is "keep moving." I'm at the point where my body won't do that, and then what? My wrists and fingers are swollen and my brain is near shutdown. I had to admit that to my manager this week and it's starting to become obvious.

I was going to share the whole rap, but it's explicit content and might offend some. So, an excerpt:

You tell me you know how I'm feelin'
but a friendly hand can send me reelin'
'cause the pain is real, not deep inside
even though the pain I know I'm s'posed to hide

What helps take your mind off the pain when you have a few minutes of down time? Writing? Singing? Music? Besides the angry FMS rap, which hit my brain out of the blue, I bought a Doodle Diary at work. I may doodle with more purpose than the diary assumes, but still, it's soothing (minus the detail that my hands hurt more when I hold a pen--I've had serious hand swelling lately). Meditation, especially water meditation, can also be helpful, though breaking through the pain cycle to reach the right state is difficult on really bad days.

May you have a pain-free hour today!

Namaste,
Jack

A bad spell, and

On a personal note, I'm going through a rough patch right now. My fingers object to me doing almost anything, my neck and back are screaming constantly, and I feel worse rather than better after working out. I'm creaking and in pain, and I'm trying desperately to hold it together with my spouse going TDY in a few weeks. The kid's therapy will be interrupted and I need to try to coordinate another therapist being able to see him across the country. I need more than ever to be two people, and I'm too tired and in too much pain to be even all of one.

OK, thanks.

Aside from that, there's something important I'd like to bring to your attention. As most of my readers (both of you) know, many pain doctors are very reluctant to prescribe pain medication. They cite supposed dangers of pain medication (though opioids taken correctly are less dangerous even than the "innocuous" carrier drugs many of the mildest are paired with, ibuprofen and acetominophen) and threat of addiction, or worry that patients with chronic nonspecified pain like Fibromyalgia may be faking to get drugs that make them high (there are far easier ways--if I want an illicit high, it would be far easier and more effective to score some marijuana, but I'm generally a fairly law-abiding citizen).

What doctors need to know is that recent research shows that there are dangers to leaving chronic pain untreated. In their study "Beyond feeling: chronic pain hurts the brain, disrupting the default-mode network dynamics," several Northwestern University doctors discovered that under the constant input of chronic pain, the brain rewires itself, bypassing some critical areas involving memory and emotion. Another study by the same team shows that brain mass is actually lost by patients dealing with long-term chronic pain, particularly in areas dealing with pain perception and response and with interpreting data and decision-making.

Patients with long-term chronic pain have long known that "brain fog" is one of the results of living this way. Now it turns out that making us suffer through it is causing brain damage, as well.

Fatigue Hell

The flip-side to almost any chronic illness is chronic fatigue. It's a symptom of your body being run down all the time, or of fighting through pain or other dysfunction to function at all, or both. The WebMD Symptom Checker lists 20 diseases with the general symptom "fatigue" (with "none of the above" for "made worse by..." and without degree of severity specified), from sinusitis to MS. Of course, FMS is on the list.

Interestingly, Chronic Fatigue Syndrome/CFIDS/ME is not on the list. It is a well-known disorder to FMS patients. CFS patients have fatigue with pain, while FMS patients have pain with fatigue, but many believe that they are essentially the same disorder, or are points on a pain/fatigue continuum that describes the spectrum disorder encompassing both.

Even to many of us who are in pain full-time, the fatigue is the worst of this life. It seems to lead to total mental breakdown. Thought processes and emotional controls both weaken, making every aspect of life more difficult.

All this, of course, is a roundabout way of saying that I'm utterly drained and fatigue has gotten the better of me.

Is the cure ever worse than the disease?

This week, millions of arthritis sufferers heard that a gluten-free, vegan diet would alleviate their symptoms. Many surely rejoiced and headed to stores to stock up, but many others surely either took the news as disheartening or immediately dismissed the diet as too hard or too expensive to follow, or both. An arthritis sufferer on a limited income or even a disability check may not have the means to buy gluten-free whole grains or to live on fresh produce.

The major problem I see with this study is that a "gluten-free vegan diet" was compared to a balanced diet that was neither, but they had no groups for one or the other. Are there studies asking whether a GF but not vegan, or vegan but not GF, diet helps?

The disheartening and difficult parts of this story:
1. It was shown that there was no improvement in symptoms or weight loss by participants eating a regular, balanced diet. If there is no point in striving for healthier habits and balance, some people will give up clinging to that last shred of trying for healthy habits.
2. It gets to the point where there is literally nothing we can eat. We're down to just organic produce, particularly locally grown. But wait--citrus fruits can interfere with medication and produce inflammation. Add in a few allergies and you're really scraping (I can't eat corn, which is a pretty common ingredient in GF/vegan food, and many people with nut allergies are also allergic to soy).

Book Review: *Fibromyalgia for Dummies*

In general, I'm a fan of the Dummies series of books. I still run into people offended by the title, but they're generally a solid recommendation for anyone looking to learn more about a subject.

Fibromyalgia for Dummies is, as all the Dummies books I've read are, a solid overview of the condition. It's written by a clinician who has conducted a couple of the studies referred to in the book, and he tries very hard to be impartial and give good, concise information to help patients with FMS and their friends and family members. He more or less succeeds.

Fibromyalgia for Dummies has a lot of good information that both validates the symptoms and real pain from which FMS patients suffer and points out that there are a lot of other causes for similar symptoms. There is a lot of information about the hazards of self-diagnosis and self-prescription (almost to the point that the book starts to feel doctor-centric, its only major flaw--doctors get annoyed if you suggest a diagnosis because you have the same symptoms as your father's brother's nephew's cousin's former roommate? Doctors get annoyed if you have any kind of opinion at all, in my experience, so I don't see why them being bothered by something is my problem), but also, good information on different treatments and studies showing their effectiveness (or the lack of studies, or studies showing a lack of effectiveness beyond the anecdotal).

Besides treatments and evidence, Fibromyalgia for Dummies contains a great deal of information on possible causes, experimental treatments and those in development, and alternative treatments from supplements to TENS to acupuncture. It also gives a good overview of other syndromes associated with FMS as well as treatments and aggravating factors (if you come away from this book with nothing else, the mantra "avoid chocolate, alcohol, and acidic/citrus fruits" should be stuck in your head--those are aggravating factors for not only FMS but a lot of related conditions).

The other things Fibromyalgia for Dummies contains are:

• Doctor information, such as:
• What kind of doctor do I need?
• What questions should I ask a new doctor?
• When should I look for a new doctor instead of sticking with the one I'm seeing?
• Information on who gets FMS:
• Mostly women
• Some men can get it, particularly in the case of some Gulf War vets and other PTSD patients
• Even children and adolescents can have Fibromyalgia
• Possible causes (genetic factors, PTSD/previous injuries, neurochemical imbalances)
• Information for friends, family members and loved ones

Fibromyalgia for Dummies is a great overview reference and starter book for both patients and physicians who are interested in learning more about FMS. 4 stars/5.

A brief note on faith

Many people with chronic illnesses turn to faith to support them. Others find that the church that has always been a "home" to them abandons them in times of most need. It has been said often that religion is a "crutch," but we are the sick and the lame, and sometimes we need something to prop us up--that is not a sin or a crime.

Nevertheless, there are many of us in chronic pain who have lost faith, who believe that a loving God could not create our bodies to break down and suffer so, would not make an infant ill and weak and in pain for all its short life only to be whisked away to heaven just as it seemed he would grow, would not make children so angry and sad that they think of doing violence to themselves. Seeing what people do to each other in the name of God, trying to enforce their version of faith on others when almost any modern version of faith would, if strictly true, have condemned most of humanity for all of time, has taken my faith in the church. Seeing that there were clearly men before belief in any God known to man today existed takes my faith. An article covering research that says that when Moses had his great visions, he was high on drugs, takes my faith. The fact that most of what the churches teach and believe is based on the teachings and words of Paul of Tarsus, not the great man he was purported to follow or the words of a God on High, takes my faith.

Might the Universe have a spirit? Might we all have souls that live on in some sense? I would like to believe that. But to me, God as we know God cannot be.

If faith comforts you and gives you hope, then keep God in your heart. But please do not judge the rationalists or try to enforce religious tenets as laws.

That said, I would like to share this awesome poster: The Golden Rule for Atheists

Edit: Which is based on this also-awesome poster, which makes some of my point: judge not, lest ye be judged has a similar basis (as does the Rule of Three).

Trigger Points vs. Tender Points

Occasionally, especially when you talk to a lot of FMS patients (or read a lot they've posted to the internet), you'll notice a common confusion: they'll refer to having a certain number of "trigger points" for diagnosis. This is a common confusion between two similar terms that should both be familiar to Fibromyalgia patients.

"Tender Points" (TPs) are eighteen points on the body that are very sensitive to pressure. Pressing gently on the spots (just enough to see white under the fingernail, or about what you'd use to press a piano or keyboard key) causes serious discomfort or pain. Having at least 11 of the 18 tender points on both sides of the body is the major diagnostic criteria for Fibromyalgia Syndrome.

Most Fibromyalgia patients also have "Trigger Points" (TrPs). Trigger Points are not a symptom of Fibromyalgia, but of Myofascial Pain Syndrome (MPS). The worst thing about TrPs to a patient is that they are not only painful themselves, but they can "refer" pain along nerves and muscles so that pain can be felt far away from the problem area. Unlike Tender Points, Trigger Points can be felt from outside as "knots" in tight muscles. Also unlike Tender Point discomfort, the pain of TrPs can be directly treated. Biofeedback and various forms of massage have varying degrees of success with treating TrPs. Various needle techniques, from acupuncture to injections of lidocaine and saline, have also been successful for some patients.

A simple at-home treatment that may help some patients with TrPs is tennis ball massage. The easiest way to use this is just to lie down with a tennis ball under the TrP. If you are not sure exactly where that is, put it in the right area and move around slowly until it feels like the right place. Then, I like to rock back and forth slightly to loosen the muscle and ease relaxation, but that isn't totally necessary. Once you are lying on the tennis ball (and have rolled on it to massage the muscle if you chose), just relax on it as much as possible until the pain has faded to a bearable intensity. Later, use heat, rather than ice, to keep the muscle relaxed; ice can cause muscle tension.

Small Comforts

The most important aspect to managing chronic pain is figuring out what you need. In a lot of little ways, you can make your days easier to get through on those days when getting through is the best you can hope for. I keep a sock and a small pillowcase full of dried rice in the freezer (they also make excellent hot packs when microwaved). There is a pillow in the chair where I always sit and a blanket on hand (because I get cold easily). I keep a lot of pillows around me, because I can manipulate them into soft support so that I am in the least-uncomfortable position I can manage. Other people might always need a hard chair or a hard surface.

What's on your feet may also be important to your general comfort. DH's stepmother recommended the 2oz. Miracle by Profoot, an insert I like a lot. A lot of Fibromyalgia patients have oddly-shaped feet (often causing or caused by Morton's Foot or Morton's Neuroma), requiring orthotics or well-fitted supportive shoes. I hate the feel of shoes on my feet and generally feel better barefoot, but as that's generally impossible (work, errands, and a very short summer have conspired against me here), good insoles help some, not only with foot pain but with leg and back pain.

What makes you feel good? Is there a "trick" you use, or a certain type of mattress or chair you can't live without?

The Poo Post

One of the most frustrating and embarrassing syndromes that frequently accompanies Fibromyalgia is Irritable Bowel Syndrome, or IBS. The NIH definition of the disorder:

Irritable bowel syndrome^* (IBS) is a “syndrome,” meaning a group of symptoms. The most common symptoms of IBS are abdominal pain or discomfort often reported as cramping, bloating, gas, diarrhea, and/or constipation. IBS affects the colon, or large bowel, which is the part of the digestive tract that stores stool.

IBS is not a disease. It’s a functional disorder, meaning that the bowel doesn’t work, or function, correctly.

Some IBS sufferers have chronic diarrhea. For some, any outing means scouting out the bathrooms and a quick escape route. Outings sometimes end early due to embarrassing accidents, leaving young-to-middle-aged sufferers considering protective undergarments. In milder cases, a patient with IBS with diarrhea will still pass loose stools 3-4 times a day or more, or after every meal and snack.

Gas, bloating and cramps are probably the most embarrassing aspect of IBS. It's harder to hide gas than the other aspects of IBS; attacks often come without warning and in inconvenient public places. Chronically bad gas can lead one to feel like a social pariah.

Others have chronic constipation. Chronic constipation is probably the most painful aspect of IBS, often accompanied by cramping and an urge but an inability to pass a stool. Stools passed are hard and infrequent. Stool can back up in the colon and cause discomfort, especially after eating. Nausea and reflux or vomiting can be related to constipation.

The insidious thing is the "and/or." It is possible to suffer alternately from diarrhea and constipation. This makes IBS particularly difficult to treat medically, as the treatments for each exacerbate the other.

The direct causes and mechanism of IBS are unknown, but there is thought to be a genetic component. Diet and exercise make a difference to frequency and consistency of bowel movements; a diet high in fiber and low in empty starches can help some IBS sufferers.

As with any other time a part of your body "doesn't function correctly," try to learn what works for you to let your body function in the healthiest, most comfortable manner possible. Gentle exercise and lots of fresh fruits and vegetables may help. If not, don't feel awkward bringing it up to your doctor. He's heard it before.

Heard at the doctor's office...

My pain doctor said to us yesterday of a procedure, "this isn't necessary. It's a quality-of-life issue."

When quality of life is considered more important than quantity of same, particularly by doctors who are supposed to specialize in the treatment of pain, then we will be making real strides in medicine.

Pardon my lack of a more substantial post for the weekend; I am in a lot of pain and am physically worn out from work, school, and pain (plus driving and the little bit of housework I do--I haven't done enough of that, and I hope we don't get in trouble because the driveway isn't shoveled).

Herbs, Supplements, and You

I had an interview for a management position I have little hope of obtaining right now (not enough management experience, a preference for hiring outside, no one else to fill my current position, but I know I could do this job), and the manager was surprised to learn that I deal with this since I'm so conscientious about showing up. I hope I do not too badly color the impressions of people who realize how functional I am; how hard I fight every day to be fully functional does not show, and using me as a yardstick by which to measure other patients who do not manage to do as much every day is unfair. My life has been different, and I have learned to cope in different ways and cry in private. When the subject of Fibromyalgia comes up, everyone seems to have a friend or relative with this disorder. Sometimes it's sympathy--"Oh, my god, my aunt's friend's cousin's former roommate's brother's daughter has that! It's really painful, right?" (Yeah.) More often, it's "Oh, my cousin/aunt/friend has that. X, Y, and/or Z really help." (The worst is "Foo had that, but was cured by X, Y, and/or Z.") X, Y, and/or Z, in these cases, are usually various herbs and obscure supplements.

On alt.med.fibromyalgia a decade ago, people were selling cures with amazing regularity. There was a solid group there, and we would attack the "snake oil salesmen." Oddly, I have since seen actual snake oil touted as a cure for Fibromyalgia. Herbs that I know have helped some patients include Cat's Claw, Devil's Claw, Valerian and Melatonin for sleep, and St. John's Wort. Here is a good rundown on herbs used to help some Fibromyalgia patients. I won't cover the myriad medications and standard treatments in this post--I'll save the various protocols for another day. FMS patients should include a good multivitamin in any regimen. Other supplements that work for some patients include MSM, magnesium/malic acid, SAM-e, various nutritional supplements marketed for FMS, Kava Kava, and Co-enzyme Q-10. Remember that any herb or supplement is a drug. Research possible interactions with medications you are already taking and consult your doctor before starting any program or taking any herb or supplement.

A more personal take: my "guilty" supplement is tobacco. If I take too much, my fatigue is far worse than it normally is. But one to two cigarettes a day (I allow myself one and smoke about half, occasionally as much as 2/3, of it) gives me a five-minute respite, when I just feel a numb tingle all over instead of pain. My overall pain levels stay lower, too (on average, 1 increment on the 10 scale, I guess). I told a friend that, and she recommended Relacore as a supplement, saying it contained tobacco in some form. I don't find that I get those benefits, but my energy level does stay a lot more even over the day. I still have low-energy days, but at least they're more consistent instead of dealing with crashes.

Living (and parking) with an invisible disability

One of the hardest things about living with Fibromyalgia and other chronic pain/fatigue disorders is "You look fine to me" syndrome. This is a syndrome every sufferer of an invisible illness deals with, though the symptoms manifest in our friends, relatives and acquaintances rather than in our bodies.

Many disabilities cause visible physical degeneration or an outward visible sign, such as a wheelchair or leg braces. Many others, however, make it difficult to walk very far or function very long without serious pain or fatigue. Such patients do need some accommodations such as handicapped parking permits or even to sit down and take breaks while doing simple household chores (my father's parents and my ex-husband never lost opportunities to tell me how lazy I was, generally on my worst days, for sitting down for a little while).

I work on my feet for eight hours a day and have done so since I re-entered the workforce five years ago. I push through a lot of pain and fatigue to manage that, and sometimes, all I can do is lie down and cry when I get home. Sometimes my heart pounds at any effort, and I do my best to spend more time doing paperwork or to sit and sort books instead of walking around with them (and I make sure I have my cart to lean on if I need it). Not every person with FMS and/or CFS can do that much. Other disabilities are invisible, too; I have a sister with Pseudotumor Cerebri, and she "looks fine" unless you're close enough to see all the surgery scars on her head, neck, back and abdomen (all covered by hair and clothes) or the LP (spinal tap) scarring on her back from the hundreds of therapeutic spinal taps she's needed between shunts. When she walks far or overheats, her intracranial pressure shoots up, causing her a headache worse than a migraine and threatening her vision. Of course, she "looks" fine, so deserves no accomodation according to people like those who made the comments and "fraud reports" highlighted here.

I haven't had a parking placard in years, and often used a cane back when I did because of pain in my right hip and leg. Cortisone injections in a nerve in my back help this some, but I still limp on that side when the shot starts to wear off. My husband and I both exercise regularly in low-impact environments, and if I can stay on my feet at work, I can more or less make it to the car. But judging others--whose doctors must agree that the accommodation is necessary--is wrong. People with invisible disabilities shouldn't be subject to the stare or rude comments from friends, family, or strangers. I may not look sick, but I feel sick every day of my life.

Sensitive

This modern world is full of conveniences. We have automatic everythings and easy take-out food right from the supermarket ("supermarkets" are themselves, of course, a major modern convenience). One of the greatest modern conveniences is at your fingertips right now, or you wouldn't be reading this. I'm no luddite; I believe that progress is a good thing. Like all good things, though, the modern world has its drawbacks.

One of the drawbacks is a non-specific syndrome known as MCS, or Multiple Chemical Sensitivity. Most people will go through all of life without being hypersensitive to any sort of chemicals. Others will have isolated reactions to certain chemicals. For the person with MCS, it sometimes seems as though anything, or even nothing at all, will set off symptoms. The smell of certain cleaning products will cause rashes, headaches, and other allergic symptoms. When you can't wear your jewelry or any clothing with a zipper and can't be around when anyone's baking because the smell of some spices causes you a serious reaction*, you start to feel that you're (1) allergic to everything and/or (2) crazy.

MCS seems to be related to some other chronic disorders. Many Fibromyalgia/MPS and Chronic Fatigue Syndrome patients report that their original symptoms started after a trauma or illness. For a small subset of those patients, the illness that first triggered that cascade seems to have been related to MCS (as with Gulf War Illness patients who are thought to have become Fibromyalgia patients and people whose illnesses were related to Sick Building Syndrome). Illness begets more illness.

Symptoms of MCS can be any allergy-like symptoms, from nasal allergy symptoms (rhinitis) to contact dermatitis. They can also include general malaise and worsening of any other chronic illness a patient may have.

What can you do about your MCS symptoms?

1. Try to figure out, as far as possible, what your triggers are and eliminate them from your life. If chlorine bleach sets you off, use bleach-free cleaning products and try to swim in salt-water pools rather than chlorinated. If cigarette smoke is a trigger, do not spend time in heavy-smoke areas.
2. Consider that food sensitivities may be part of the complex constellation of symptoms and syndromes that seem to have taken over your body. Consider an elimination diet. Keep a food diary in conjunction with your symptom diary even if you are not going for elimination; you may find that those horrible dizzy spells are caused by MSG** or that your chronic migraines are better on weeks when you don't eat peanuts.
3. Use detergents, soaps, lotions and cosmetics that are hypoallergenic and, as far as possible, free of dyes and chemical perfumes.
4. If you have a skin reaction to any item of clothing, wash it with a detergent free of dyes and perfumes. If you have a reaction again the next time you wear it, get rid of it. Put it straight in the "charitable donations" bag or box, even if it looks really amazing on you and you will never have a shirt/skirt/pair of jeans as wonderful again.
5. If you're sensitive to jewelry/metal on your skin, consider having all snaps and zippers on clothes you just have to keep replaced with metal-free buttons, unless you can find surgical steel snaps/zippers.

*Personal Story: I always had some sensitivity to cinnamon--I would always get sores in my mouth when travelling, which I eventually pinned down to the fact that I would always buy cinnamon gum when travelling. I started working in a Barnes and Noble Café and started having allergy symptoms all the time: rashes on my hands and arms, trouble breathing/worse asthma symptoms, constant sinus headaches. I soon pinned it down to cinnamon once exposures to concentrated sources of cinnamon--the Cinnamon Sunset tea and actual cinnamon powder--caused me a full-on anaphylactic reaction. The rashes were the result of Chai splashing up on my arms when working at the bar. With regular exposure, the reaction worsened to the point where even smelling cinnamon scones baking from across the store or talking to a customer who's chewing cinnamon gum has caused my tongue and cheeks to swell.

**This is my husband's experience--MSG is bad for him, and when he really craves a food with MSG to the point where he would rather have it than avoid the reaction--dizziness to the point of collapsing--he has to wait until he does not have to do anything for a couple hours afterward.

"Just Depressed"

Many patients with chronic pain dread those words. "You're just depressed" and "It's all in your head" are many doctors' ways of dealing with pain they can't see. Then, as with so many other attempts, we talk to counselors who eventually realize that though they might help us cope better with our lives for a while but that if we're more depressed than other people, it's more an effect of the constant, unrelenting pain than a cause.

There is, however, a depression/chronic pain cycle or a stress/chronic pain cycle. Stress will make the pain worse; worse pain will make the stress worse. Most of the time, though, pain is independent of depression in the sense that treating any depression does not necessarily help with pain (some medicines treat both for some patients). For chronic low back pain patients, antidepressants have been shown to be no help, but they are still frequently prescribed by doctors who cannot believe that pain without an obvious organic cause can be physical rather than psychosomatic.

If you're running into a wall with the "all in your head" people, remember: you are not alone. It is not all in your head. Do your best at everything you can, then work at being comfortable and in as little pain as possible.

Menthol and other topical analgesics

I have cervical disc disease among my other problems. I'm far overdue for a cortisone shot, having had to reschedule twice. I slapped a menthol patch on it, and it feels cold deep down. Cold is better than pain in this case (in my fingers, below about -15F, cold IS pain). When I have really bad sore spots, I find some temporary relief of the worst pain using Salonpas patches or the blue ice gel. Both have menthol as the only active ingredients and both are dirt cheap at your local mass merchandiser.

There are a lot of other topical analgesics, with active ingredients including:

• camphor
• salicylates
• eucalyptus oil
• cinnamon
• various forms of mint
• capsaicin (the compound that makes chile peppers hot)
• lidocaine and other numbing/anesthetic agents (EMLA is in this group)
  
• NSAIDs (non-steroidal anti-inflammatory drugs like Corprofen)
• eucalyptus oil
  

Some of these may be very effective for you. Some may not work at all. Some may cause you serious reactions. When trying any new topical medicine, it is important to remember that it is medicine (even if it's all natural/herbal) and is entering your body. If you take any medicine orally that's related to or that has known negative interactions with an ingredient in a topical medicine, do not use that medicine even if you do not think it can be harmful (did you know it was possible to OD on eucalyptus oil?) Even if you are not worried about interactions, try any new topical medicine on a small patch of skin (a small dab, rubbed out to about the size of a quarter/2cm diameter) on your forearm or other inconspicuous spot. If you want to be properly cautious, wait 24 hours. If the area turns red or rashy or starts burning in that time period, you don't want to use this medicine. If the smell of the medicine makes you feel bad (worse than simply "smelling something unpleasant"), don't even do the test--you may have a severe allergy to an ingredient. I have a severe allergy to cinnamon; a friend of mine used a topical containing cinnamon on my husband and I had a bad allergic reaction from smelling it across the room. I've been doing better with airborne cinnamon on Zyrtec, but I still would not put it on my skin.

To sum up, topical medicines can be helpful for chronic pain, but be as cautious in their use as you would with any new medicine.

Cortisol and CFS

A friend of mine recommended Relacore, which is supposed to help with cortisol levels. While I haven't had help with pain from it, I have noticed that my energy levels are more even through the day when I take it. Now, a recent study has shown that women with CFS wake up with lower levels of cortisol. I don't know whether I've lost waist inches--I stay overweight, and I do not overeat, anyway--but maybe it does help with the energy. I think I have fewer days on which I feel like I'm swimming through Jell-O(r) to move or get anything done.

Some other interesting links:

• 5 things you didn't know about Chronic Fatigue Syndrome
• The Spoon Theory

Misleading Health Headlines

There were big headlines on MSNBC today warning that pot is "A Bigger Cancer Risk than Cigarettes!" I'm guessing that smoking anything regularly is a cancer risk, but anyway, their point is that smoking one joint is around equivalent to twenty cigarettes (if you read the article instead of getting a headline stuck in your head like a lot of people seem to), mostly because it's smoked unfiltered and all the way down to the end. On the other hand, (1) most joints are shared, so one person isn't smoking the whole thing, and (2) the average casual smoker may not smoke even part of one joint in a day, while most smokers smoke a pack or more.

When you get all the way down the article, you see that this is a study of 80 people with lung cancer, and that they have deduced that smoking more than one joint per day leads to a fivefold increase in lung cancers. Since everyone in the group had cancer, with no control group, I'm not sure how they deduced the relative risk.

This is not about marijuana, folks. It's about the Mainstream Media putting out alarmist headlines then burying the facts in the part of the article by which most people have stopped reading and the rest are skimming enough to miss it. These people are controlling our elections. They're feeding "wars" on concepts that affect our politics, our healthcare, even the forms of entertainment we use to escape.

A Few FMS Myths

1. Fibromyalgia is a "wastebasket" diagnosis, not a real disorder.

Truth: Fibromyalgia patients exhibit different symptoms that are part of a constellation of related syndromes. There are, however, specific diagnostic criteria for Fibromyalgia, and patients exhibit some of the same symptoms.

2. Fibromyalgia patients are just drama queens and complainers; there's nothing really wrong with them, but they expect special treatment.

Truth: Most of us try very hard to function as close to normally as possible. Our bodies simply won't do all the things we want them to.

3. Fibromyalgia patients are simply focusing on what everyone deals with. If they'd stop doing that, they'd be fine.

Truth: There is nothing normal about waking up in pain every day, or having to try to ignore unrelenting pain every minute of the day. If you have constant pain that OTC medications don't help, then you probably should focus on it, and so should your doctor.

4. Fibromyalgia only affects people who are out of shape, eat junk food, or otherwise don't take care of themselves.

Truth: There are patients who were everything from hockey players to avid power-walkers to dancers before this disorder entered their lives aPublish Postnd made any movement painful. Many of us work hard at keeping low-impact workouts, walking, and stretching exercises part of our lives even when it's a struggle to move. Junk food isn't good for anyone, and may exacerbate some symptoms for some patients, but most Fibromyalgia patients aren't living on it any more than the people who accuse them of it are.

Starting up

It's hard for me to start new projects and harder to get the motivation to follow through. I have a busy life, and my body doesn't let me do half the things I want and need to do. Here I'll start... maybe not at the beginning, but some time back.

I was diagnosed with Fibromyalgia in 1998, ten years ago tomorrow. I was a young student, worked after school, did schoolwork all the time, had been very type-A all the way through high school--not having to work for my grades didn't teach me sloppy habits, it gave me time to add all kinds of unnecessary detail and work even harder at learning more than school would teach. I had started to be too ill to work all the time; pain and fatigue had made it impossible for me to even stay awake in class or at basketball practice.

Since then, I've been married, divorced and remarried to a wonderful husband. He's very understanding about pain as a limiting factor, primarily because his body is as messed up as mine. I have a wonderful seven-year-old son. Medically, I've been through:

• becoming allergic to NSAIDs
• serotonin syndrome when a well-meaning doctor put me on Celexa and another antidepressant without taking me off Paxil to try to treat this
  
• stroke-like symptoms (for several months, one side of my body--I think the right--did not respond well and I lacked muscle response even in my face)
• being given Tylenol as my only pain control medication option
  
• being referred to all of these and sent back to the doctor because they either didn't feel I needed the services or, in the case of PT, they were clearly worsening the pain:

1. a chiropractor
2. a physical therapist
3. a counselor

• An EMG and confirmation that I have a lack of motor and sensory nerve response in both elbows
• cervical disc disease
• other nerve compressions and occasional frozen joints that respond only to cortisone injections
• allergies or sensitivities that mean I have to carefully vet my clothes and jewelry (I can only wear a watch outside my clothes) or I end up with hideous breakouts and rashes
  

That's just a taste. My current medical regimen:

• diet/exercise (current exercise is working 8 hours a day on my feet, 2 water aerobics classes a week, plus working outside shoveling snow for 1-3 hours a week, which is aerobic as well)
• lyrica, 100mg 3x/day
• Relacore, 2 capsules 3x/day
• SAM-e, 400mg every morning
• Zyrtec, 10mg every morning
• Synthroid, 150mcg every morning
• singulair, 10mg every morning
• flonase, 1-2 sprays/nostril every morning
• fish oil and a multivitamin
• Tylenol up to 1000mg and Flexeril 10mg as needed (the Flexeril I can only take at night or it will make me dangerous to be around--I get very sleepy and very angry if I have to force myself awake, and I don't think I could stay awake on the road)
• regular injections at C4 and L4-S1 for nerve/disc issues
  

For years, I took vicodin for pain, but as I had to switch providers, my current doctors do not find it appropriate. I smoke about half a cigarette most days; I find that at that level, I do not develop tolerance, and it causes most of the pain in most of my body to be dulled temporarily, felt only through a distant numb tingling feeling. Orgasm helps almost as much for a few minutes.

While setting this up, I came across this article, whose comments perpetuate every FMS myth I've ever heard, and which includes the gem of a comment "Some doctors believe diagnosing the symptoms as an illness only causes people to fixate on discomfort that other people just put up with..." If a genie were before me to grant one wish, I would wish that every doctor who has ever dismissed FMS as psychosomatic have to walk two moons in my shoes.