Trapped in FMS Hell

I'm behind, but nothing has changed...

noreply@blogger.com (Jack Weber) — Thu, 25 Mar 2010 00:40:00 +0000

...Except that I've moved to Florida and done the whole new-doctor dance again. They don't care. I was told by a pain management doctor that I'd basically have to learn to live with it. What the hell have I been doing, again?

Anyway, that's my brief update. More later.

Why we believe

noreply@blogger.com (Jack Weber) — Thu, 21 Aug 2008 04:33:00 +0000

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

noreply@blogger.com (Jack Weber) — Sun, 17 Aug 2008 20:59:00 +0000

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

noreply@blogger.com (Jack Weber) — Tue, 22 Jul 2008 05:27:00 +0000

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

noreply@blogger.com (Jack Weber) — Tue, 22 Jul 2008 04:53:00 +0000

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

noreply@blogger.com (Jack Weber) — Tue, 15 Jul 2008 06:31:00 +0000

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

noreply@blogger.com (Jack Weber) — Mon, 14 Jul 2008 04:09:00 +0000

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.

noreply@blogger.com (Jack Weber) — Sun, 06 Jul 2008 17:50:00 +0000

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

noreply@blogger.com (Jack Weber) — Tue, 01 Jul 2008 04:21:00 +0000

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

Weekend Updates (Personal)

noreply@blogger.com (Jack Weber) — Sat, 28 Jun 2008 03:36:00 +0000

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.

noreply@blogger.com (Jack Weber) — Tue, 24 Jun 2008 00:24:00 +0000

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

noreply@blogger.com (Jack Weber) — Sat, 14 Jun 2008 00:05:00 +0000

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

noreply@blogger.com (Jack Weber) — Fri, 06 Jun 2008 05:57:00 +0000

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

noreply@blogger.com (Jack Weber) — Wed, 28 May 2008 02:24:00 +0000

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

noreply@blogger.com (Jack Weber) — Wed, 21 May 2008 04:56:00 +0000

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

noreply@blogger.com (Jack Weber) — Thu, 08 May 2008 04:13:00 +0000

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

noreply@blogger.com (Jack Weber) — Tue, 06 May 2008 07:46:00 +0000

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...

noreply@blogger.com (Jack Weber) — Mon, 05 May 2008 07:39:00 +0000

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?"

noreply@blogger.com (Jack Weber) — Tue, 29 Apr 2008 18:57:00 +0000

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

noreply@blogger.com (Jack Weber) — Sun, 27 Apr 2008 01:40:00 +0000

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?

noreply@blogger.com (Jack Weber) — Fri, 18 Apr 2008 06:03:00 +0000

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

noreply@blogger.com (Jack Weber) — Sat, 12 Apr 2008 05:04:00 +0000

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

noreply@blogger.com (Jack Weber) — Tue, 08 Apr 2008 04:10:00 +0000

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

noreply@blogger.com (Jack Weber) — Fri, 28 Mar 2008 05:10:00 +0000

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?

noreply@blogger.com (Jack Weber) — Fri, 21 Mar 2008 16:36:00 +0000

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).