Tired Girls

Sunday, November 26, 2006

Annoying legalities

I had my second appointment with Dr. Joseph Gnoyski (fibromyalgia/chronic pain specialist) this past Tuesday, and was pleased.  Once again the office was perfectly on time (even though the waiting room was a bit crowded), and the office had asked that I prepare a “follow-up” sheet in advance of my visit, outlining how I was feeling, mentioning meds which needed refills, and listing any issues I needed to discuss with the doctor.  I really like how organized they are, and how they seem to want to listen to what I have to say!  I did have to do the “dice roll” for random urine testing for illegal drugs, but I rolled a nine and was cleared for this visit.  I guess I should ask what they’re checking for—I know I’m only taking what I’ve been prescribed, but I’m curious out what drugs they specifically think are problematic.

I’ve found that 10 mg of oyxcontin just hasn’t been controlling my pain very well, so Dr. Gnoyski requested that I start to take 10mg every 12 hours instead of every 24.  He said that was the way OC seemed to work best—it should be in the body consistently.  He wrote me a prescription for 120 pills, enough to carry me for two months until my next appointment.

We took the prescription to our regular pharmacy on Tuesday afternoon.  Everyone who works there knows us—we get scrips filled all the time, and we also do our grocery shopping at the store, so it’s not as if we’re unfamiliar faces.  The pharmacy tech looked at my prescription and said they didn’t have enough pills in stock to fill it.  I asked if they could just give me what they had in stock, and let me pick up the rest later, but they aren’t allowed to do that.  I can have all or nothing.  She said they’d order the pills, but she doesn’t expect them to be in until next Tuesday at the earliest.  They have to be special-ordered and hand-delivered or some such nonsense.  The oxycontin I had on hand ran out yesterday, so now I’ve got no meds until next week.  I don’t know who to be angry at—am I being inconvenienced by a federal law or a state law?  Or, is it just a state pharmacy board regulation?  How crazy is it that the pharmacy MUST dispense ALL my pills at the same time, and must deny me even 4 or 5 pills to get me through to the expected delivery date?  Their only suggestion was that I try another store (but I have a feeling the pharmacies are only “allowed” to stock a limited number of oxycontin pills at one time), or to get the doctor’s office to write me a new prescription.  That prescription would have to be picked up in person, of course, because they aren’t allowed to be phoned in.  I think it’s all really, really stupid.

The doctor warns me to be careful while picking up my oxycontin prescription, because some of his patients have been robbed outside the pharmacies and their pills stolen.  Thanks to the illogical laws here, if anyone wants to try to rob me next week, they’ll get their hands on 120 pills instead of just the 60 they would get if I was allowed to pick up my pills on two separate dates.  As usual, laws surrounding prescription and OTC drugs seem to always be about inconvenience for law-abiding people.  I also now have to come up with twice as much money for my cash-pay prescription, because I can’t stretch out my payment over two months.  It’s frustrating, yet these pills eradicate my pain and give me my life back, so I’m willing to jump through hoops of red tape to get them.  I just wish I didn’t have to.  It’s like I’m being punished for needing them.

I’ve wanted to post more, but have been bogged down by a slew of new part-time jobs (thank goodness for mental clarity!), and by participating in NaBloPoMo on The Blog Pound.  All this writing is good practice, but it doesn’t allow me much free time.  At least I’ve had the energy and ability to stay focused and to get the jobs done—my new doctor has made life a lot more enjoyable than it had been.

Thursday, November 02, 2006

Pain and productivity…

...are like oil and water.

My lack of posting is mostly a result of keeping busy, and not for a lack of things to say.  Flippy and I started to apply for freelance jobs back in early October, and suddenly we were swamped with assignments (and new things to learn).  I’m now doing some website design, some freelance “sales” stuff via the Internet, writing three or four blogs, and just about to start working for a mortgage broker (again, I’ll do that online).  It’s been fun and challenging, but I never cease to be amazed at how productivity can be totally suffocated by discomfort.

When I sit down to do work and I’m in pain, my mind wanders.  I have trouble focusing on tasks.  I tend to jump from one thing to another, and I’m easily distracted.  I feel exhausted, even if I’ve just woken up.  However, the second my pain meds kick in, I’m eager to work, enthused, alert, and I really enjoy what I’m doing.  For the last year or so I’ve thought that I wanted a new job and that I was tired of the Internet, but I think I’m just tired of hurting.

I’m really, really happy to have my oxycondone, and it’s totally changed my attitudes about work and life.  Unfortunately, it’s not working as well as it did when I first took it a few years ago.  On a positive note, it never makes me nauseous anymore.  On a negative note, I’m having some break-through pain and have “topped up” once or twice with an extra pill.  I truly don’t think it’s a tolerance issue, I just think my pain is worse than it was a few years ago.

These are issues I’ll bring up with my doctor when I see him again on the 21st.  I’ve read of FMS patients routinely taking 30mg or 40mg of oxycondone daily, and while I hate the thought of that much medication, I’m just not able to live a normal life without it.  At least I have options, which is more than what a lot of people have, and for that I’m very grateful!

Vitacost.com sale

I get so much email that someone should benefit it, so I hope it’s someone reading this.

Until the end of November, Vitacost.com is offering 5% off their regular prices if you shop and use discount code WE21A7.  They do have a huge selection of vitamin products, and they have good prices, but I rarely need to buy anything from them.  I used to take selenium on the advice of my endocrinologist, and I try to take a B-vitamin supplement daily, but that’s about it.

Monday, October 16, 2006

Fibronal and Fibroboost

So, have any of you tried Fibronol and/or Fibroboost?  I received an advertisement for them in my email, and while I’m normally skeptical about such things, the email was from a reputable company with a good history of helping FMS/CFS patients.  If I may quote their promotional literature, ”Classified as a natural ocean-based food product, Fibronol is a safe, effective and natural supplement, clinically proven to provide significant improvement in the quality of life for those with either FM or CFS. In November 2005, an abstract summarizing the Fibronol Phase 1-a clinical trial reported the following:

80% improvement in sleep quality
30% reduction in fatigue
71% gain in energy
31% reduction in perceived pain levels
39% improvement in overall condition ”

Those are some pretty impressive claims, which tempts me to give them a try.  However, they’re not cheap (what a surprise!).  If you’ve had experience with either product, and especially if you participated in a clinical trial, I’d love to hear your thoughts and experiences.

SORRY, THIS ENTRY IS CLOSED TO NEW COMMENTS BECAUSE OF MORONIC SPAMMERS.  FEEL FREE TO EMAIL ME, HOWEVER… IT’S A SHAME THAT WE CAN’T HAVE AN INTELLIGENT DISCUSSION WITHOUT PARASITES TRYING TO TAKE OVER.

Sunday, October 08, 2006

“All In My Head”, autographed

BookCloseouts.com is offered the hardcover version of Paula Kamen’s great book, All In My Head, for just $5.99.  As an extra bonus, the book is autographed by the author.  When I first it a couple of years ago, I paid about $20 for a non-autographed hardcover, so don’t miss this chance to get a signed copy for about a quarter of the price.  If you’re dealing with any chronic illness, Kamen’s chronicles of her “adventures” within the healthcare system are amusing, and even a bit inspiring.

Saturday, September 30, 2006

I’m in love

I’m in love, but Flippy says it’s okay… I’m just in love with my new doctor and Rehabilitation Associates of Nevada.  As I wrote in an earlier entry, in late August I finally decided to see a fibromyalgia specialist, in this case, a physiatrist.  I’d been given the referral to this clinic three years ago, but I declined to go because it was pretty expensive, and because I was feeling frustrated about my inability to find solutions to my health problems.  I’m glad I saved that referral and finally decided to follow up on it, because the appointment was definitely worth the $200 price of admission.

Superficial things first—the office is in a nice building attached to a hospital, and it’s in a nice part of town with great views.  The office was spacious and comfortable, and it was practically empty—they say they pride themselves on always being “on time”, and they seem to mean that.  The office staff were very friendly and laughed a lot, which made me feel at ease—it wasn’t like some offices where the staff are tired and overworked.  I sat in the waiting room for perhaps 10 minutes before I was called in for my appointment, and I was then put into another room, an exam room, with lots of artwork on the walls and comfortable furniture.  The place felt “cozy”, rather than harsh and sterile.  I doubt I waited more than 5 minutes for the doctor to come in, and he entered pushing a tray with a laptop on it—he took his own notes during the appointment (sorry, Georg—he’s going to put the medical transcriptionists out of business).

I’m not exaggerating about this part:  the doctor talked to me for one and a half hours.  Seriously.  He asked me all my medical history and prescription history and about other doctors I’d seen and about my various aches and pains, all while he sat and typed out notes.  When I tentatively mentioned that Oxycontin had worked for me, he nodded, and his only “opposition” to Oxycontin was to ask if I’d tried less expensive narcotics like Perocet and Lortab.  I told him they worked, but weren’t as convenient (because the pain ebbs and flows more), and he agreed that Oxycontin seemed perfect for me, as long as I didn’t mind the cost.  He asked about side-effects, and I told him Oxycontin made me a bit nauseous, so he prescribed hydroxyzine to combat the nausea.  Then he gave me a new Ativan prescription, as well.  With narcotics, I’m theoretically supposed to go into the office to get a new prescription every month (they don’t charge for it, but I have to go pick it up), but the doctor said he’d write my scrip for twice the dose I’d probably end up taking, so it would last me two months.

What I loved most of all was that the doctor trusted me, and spoke to me like I had a brain and was a responsible adult.  I don’t like narcotics, frankly—the side-effects bother me, and I don’t like the social stigma of taking them—but I really appreciated that this doctor knew they were a reasonable option for my condition, and didn’t treat me like I was going to abuse them.  In two months I have another appointment to reassess the situation (it will cost $75), but I feel like there’s a light at the end of the tunnel, here.  I may not find a “cure”, but I think I’ll be able to find a way to function somewhat normally again.

I wasn’t given any diet or exercise instructions, although I was offered a prescription for a special fibromyalgia pool exercise program (the program nearest our house is full, so I had to decline for now).  I thought I’d be told to start walking or exercising or something, but for now, the doctor would prefer I do nothing out of the ordinary which might make me feel worse.  If and when I have insurance, he said he can send me to physical therapy.  If and when Flippy and I start earning more money, I’ll be willing to pay for PT out-of-pocket, if need be.

Anyway, I feel pretty good today, mentally.  Physically, I’m just wiped out—the past week of night school (four hours each night), plus homework, plus other work, plus the doctor has left me in a state of collapse.  I woke up full of energy, but fell back into bed two hours later and have spent the day napping.  I started my Oxycontin last night (it helps me sleep free of pain, and this way I can sleep through any nausea), but the pharmacy won’t have the hydroxyzine in stock until Monday.

Oh, one quirky thing about the rehab office—they not only have a drug contract, they seem to enforce it.  There’s a note on the front desk saying that when you arrive for an appointment, you’ll be asked to roll two dice.  If they come up with a total of four or eight showing, you have to immediately go downstairs to the lab for a “random drug test”.  I know they have to protect themselves against drug abusers and drug seekers, but I’m going to be pretty annoyed at the lab fees, if and when I get hit with the test.

--------------------------------------

My current daily medication regimen:

Monday, September 25, 2006

A job interview, and 60 lbs. of dog food

I had a working job interview to be a vet tech, and the three hour process was surprisingly physical.  It seems that everyone owns large dogs!  I restrained Samoyeds and Akitas and Collies and Rottweilers just in that three hour time span, as well as numerous cats, and one nippy Jack Russell terrier.  I helped lift a 65 lb. dog onto an operating table, and did lots of other bending and crouching.  Surprisingly, I finished the day feeling pretty good, and I didn’t even feel too poorly on Friday.  The biggest stress I felt was in my legs (crouching/kneeling is painful for me), but I felt much better than anticipated.  If I get offered the job, I don’t know if I’ll still feel good after a 12 hour shift, but my 3 hour trial bodes well.

The day after my job interview, we went to a trade show for pet retailers, where we were given piles and piles of samples as the show closed down.  We were offered far more than we could carry, but I was determined to fill every last bag I had with me to the brim with freebies.  This resulted in us having to carry literally 50 or 60 lbs. of food back to our car, which was about a half-mile walk away.  I didn’t want Flippy to carry too much because of her back problems, so I took the bulk of the load, spread across my shoulders and arms.  Wow, it was heavy!  By the time we were halfway to the car I could barely lift my legs, and when we finally got to the car, my legs were like jelly and my shoulders were on fire.  I took half a Lortab and imagined the worst, but when I woke up the next morning I still felt pretty good.  Sure, I had muscle pain in my shoulders, biceps, forearms, and thighs, but it was that elusive “good pain” that I haven’t felt in years.  It was very isolated, targeted pain which felt like overworked muscles, and not the familiar fibromyalgia ache.  It was sort of exhilarating I was moving pretty slowly on Sunday, but again, I felt pretty good considering the circumstances.

Is this why FMS patients are always being told to exercise?  If I can motivate myself to exercise to the point of really working a muscle, might that muscle repair in a normal way and help lower my overall pain?  How on earth could I find the energy to lift weights every day, without the dangling carrot of free dog food?!

Friday, September 15, 2006

Once more, with feeling

I promise this is the last time I’ll ponder this in public:  I’m now positive that Cymbalta makes me sleepy.  I’ve raised my dose from 20 mg to 40 mg (most people who take it for FMS seem to be taking at least 60 mg, so this is a step in that direction), and I decided to split the dose rather than take it all at once.  I’d already switched my single dose to the evening, because I suspected it was making me sleepy, but I wasn’t positive (because I’m often sleepy).  Today, however, I took my first daytime dose of Cymbalta in the last few weeks, and wow, was I drowsy!  I could hardly keep my eyes open, and had a nice nap while Flippy was in the same room, talking to her mother on the telephone.  Nothing was going to keep me awake today.  That means that tomorrow, I’ll have to make sure I take all 40 mg before bed, or I’m going to end up like a zombie during the day.  That just won’t do.

I have a “working job interview” at 7:15 am next Tuesday, to be a vet assistant.  I’m worried about lots of things (like brain fog making me appear to be an idiot), but one of my biggest concerns is getting up so early in the morning!  Luckily, if I was to be offered a job, it would be a four-day work week, so I’d have three days to recuperate.  I have no idea how things will go… we’ll just wait and see.

Tuesday, September 12, 2006

Your experience is not necessarily mine

Just for fun, go to Remedy Find and pick a drug, any drug.  Let’s choose boring old NSAIDs (like Aspirin and Advil), and read reports from individuals about how aspirin worked to treat their fibromyalgia.  Among the comments you’ll find things like, “It bothered my stomach too much and then my asthma doctor got nervous about me using it as it could cause an asthma attack”, “the end result was an ulcer and bleeding into the bowel”, “My kidney’s (sic) starting leaking blood”, and “wound up with irritable bowel syndrome, and hiatial hernia, gerd and almost ulcertive colitis”.  After this, go to the Vitamins section, and read about people’s experiences with B12 injections.  You’ll find comments like, “I was more tired the next day then in weeks and over the next week even today I’ve been sick and had to go to the doctor to get medication”.  Try another category, something innocuous like chiropractic care.  Under the FMS section, you’ll see comments like this, “I was more tired the next day then in weeks and over the next week even today I’ve been sick and had to go to the doctor to get medication”.  Finally, if you want a real scare-fest, check out the Antidepressants section.  Someone left this gem in the Zoloft subcategory, “Antidepressants make u feel awful”.

The fact is, everyone has a horror story about something.  I know someone who seems to vomit everytime she takes Ibuprofen, so if you were given Ibuprofen for the first time and knew nothing about it and asked her opinion of it, she might tell you, “That stuff is awful!  It makes you throw up!” You could be surrounded by thousands of other people who take Ibuprofen all the time and never talk about it, but your opinion would probably be tainted the bad experiences of one person.  You might decide to not take Ibuprofen, convinced it will make you vomit, too.  I’m bringing this subject up (no vomit pun intended), because I’ve been seeing a lot of knocks against antidepressants online lately, knocks against Effexor in particular.

Let me be the person to finally speak up and say, I LOVE EFFEXOR.  EFFEXOR WORKED FOR ME.  I’VE BEEN ABLE TO TAKE EFFEXOR AND DISCONTINUE EFFEXOR WITH NO ILL-EFFECTS. Does that mean I think Effexor will work for you, too?  I have no idea… that’s between you and your doctor.  I’d never sit here and post that Effexor will work for everyone with no side-effects, yet I’m finding others who won’t hesitate to say the opposite, to imply that Effexor is a dangerous medication which no one should take, simply because their own experience with it wasn’t a positive one.  Last year, a friend was prescribed Effexor, and her co-worker said to her, “You shouldn’t take that—I’ve read that it’s dangerous!” Was the coworker a doctor or related to a doctor or had she even tried Effexor herself?  No.  However, she still felt qualified to try to scare someone in emotional crisis, to convince them against taking a medicine which might be helpful.  Last week, I dealt with two different people who need antidepressants, but are convinced from things they read online that Effexor (or other antidepressants) will make them fat or alcoholics or any number of other things.

The horror stories are bizarre and irresponsible.  Just because you had a bad experience with something, doesn’t mean others will.  If you have a bad experience, please write about and relate what happened to you, but don’t attempt to convince people that your experience is universal.  I could tell you nasty things about Wellbutrin, because I only lasted 48 hours on it and my doctor pulled me off it in a panic, but my reaction to Wellbutrin was unique to me, and means nothing to anyone else.  I might have wanted to vent about it if I’d had a blog at the time, but I wouldn’t have assumed that Wellbutrin was bad for everyone.

I linked to RemedyFind to show that someone, somewhere, has a horror story about something.  I think it’s great that there are so many online avenues for personal research, but please take what you read with a grain of salt, and don’t let fear stop you from trying a treatment which might lead to a happier, healthier life.  I read a great quote on another forum, and this is a perfect place to reproduce it:  Proceed with caution, but proceed. 

----------------------------

I want to add that I’m currently on Cymbalta, not Effexor, but it’s not because anything was wrong with Effexor (except the price).  Cymbalta has a similar formulation to Effexor, and I decided to try it in hopes I can take a lower dosage of it, still have it be effective, and save money.  It’s an experiment in progress.

Saturday, September 09, 2006

Unexpected guest

We had an unexpected guest come to our house on Thursday, to stay for two days.  It wasn’t a vacation-type visit, and it was very last-minute (we had less than 12 hours notice), and wow, has the experience thrown my body for a loop.  I tried to be very calm about having company, and while I did a bit of extra cleaning, I didn’t scrub the house and vacuum everything or go overboard—I tried to just keep my routine fairly normal.  Still, the mere presence of someone else in the house (even though the person wasn’t demanding) has left me wiped out.  I’ve been sleeping constantly, my body feels like it’s been hit by a truck, and I only felt comfortable today after I took a heavy dose of pain medication to ease all the throbbing in my body.  It’s like I’ve been on a 48 hour adrenaline rush and now I’ve crashed.  I used to just let stress roll off my back, for lack of a better description, but now it seems to dig in and knock me around.  “Regular” people don’t understand it, but it’s a reminder of why I hate having visitors.  I’m not anti-social, but any variation from my normal routine has consequences that I have trouble explaining.

Saturday, September 02, 2006

New doctor… again

I finally made an appointment to see a physician who is a fibromyalgia specialist.  A few years ago I had a great general practitioner who was very knowledgeable about FMS, and who kept up-to-date on current trends and treatments, but she left her practice and moved out of state.  I was later given a referral to Dr. Dean Mondell by my endocrinologist, but Dr. Mondell’s office told me he wasn’t seeing any new patients.  That was a frustrating time for me—my internist had moved out of state, and my endo was about to move out of the country—and having my referral “rebuffed” was about all I could handle.  I simply decided to treat myself, and that’s what I’ve been doing for the past three years or so.  I’ve felt that I’ve been stagnating lately, though, and I’m not happy with my general sense of “going downhill”, so I picked up the phone and called Dr. Mondell’s office again.  I realized he wouldn’t see me, but I was able to make an appointment with one of his colleagues.

On September 29th I’ll be seeing Dr. Joseph Gnoyski at Rehabilitation Associates of Nevada.  I’m still a bit disappointed (yes, still, three years later!) that I can’t see Dr. Mondell himself, because he’s really the local expert in FMS, but I’ll hope that Dr. Gnoyski has picked up some helpful tips during his time in the same office Just getting this appointment at all took a bit of wrangling, because the person doing the “screening” wasn’t very happy that I might not be able to get all my medical records.  I told her I’d try, but I couldn’t promise anything, but she was pretty nice about it after I explained how I’d lost my previous doctors.  I also hope she understood that as a cash-pay patient, I can’t just be running off to different doctors all the time looking for referrals.  Frankly, there’s nothing in my previous medical records that I can’t tell the doctor, anyway (unless someone noted that I was a lunatic or something).  I have a suspicion that one of the first doctors I saw when I moved to Nevada recorded his assertion that there was nothing wrong with me but depression, and I don’t need biased information like that getting passed around.  I’d really like to start with a fairly clean slate, and I hope I’ll have a good rapport with this new doctor for a very long time.

The rehab clinic sent me all their intake forms via snail mail as per my request—I didn’t want to fill them out the day of my appointment, as I’d invariably forget something.  They arrived yesterday, a thick envelope of papers, including a diagram of the body where I have to mark the places which hurt.  In my head I’ve already just coloured in the entire diagram with red, blue, and purple (as my body often feels like it’s red, blue, and purple from top to bottom), but eventually I’ll have to be more specific.  I’ll try to make a note on the diagram everytime a new spot occurs to me, and I’ll be starting with the soles of my feet, because they ache like someone has been beating them with sticks.  I don’t think “bottom of feet” is a standard fibromyalgia point, but I’ve got to start with what I know.

My first visit will cost $200, and all subsequent visits will be $75.  I hope the very expensive lab work I had at my last doctor’s visit in August will suffice for this appointment as well, but I won’t be surprised if I end up needing more bloodtests.

Wednesday, August 30, 2006

Fibromyalgia: Show Me Where it Hurts

Has anyone reading this blog seen the DVD called, Fibromyalgia: Show Me Where It Hurts?  The title seems a bit overly-simplified, and at $29.95 for just 37 minutes of video, I’m a bit reluctant to buy it without a recommendation.  However, if it’s helpful, I don’t mind shelling out for it.  If anyone comes across this entry and has feedback about it, please let me know what you thought of it!

Tuesday, August 29, 2006

You are getting sleepy…

I firmly believe that one of the keys to coping with FMS is getting a good night’s sleep.  That’s probably also the most basic key to overall good health for anyone, but for people witt FMS, disrupted sleep or lack of sleep can make a uncomfortable situation an unbearable one.  I’ve been prescribed numerous sleep aids over the years, and they seem to be like anti-depressants—you need to find the one which is a good “fit”.

I’ve tried Sonata, which left me groggy in the daytime (something it wasn’t supposed to do), and Ambien, which still had me waking up in the middle of the night.  I could get back to sleep again, but I wasn’t sleeping straight-through, and I was concerned about Ambien’s reputation for causing dependency.  I also tried Elavil (Amitriptyline), but didn’t really feel it made a big difference.  Trazodone helped, sort of, but whenever I took it, it caused an odd “head pressure” sensation for about an hour.  It was unpleasant.  Ultimately, the sleep aids which worked best for me ended up being Ativan and Klonopin, but Ativan has been the one I’ve stuck with for the last seven years.  I can take .5 mg before bed, stay asleep, and feel rested, and it’s easy enough to skip a dose every few days to avoid dependency.  Unfortunately, it’s sometimes hard to find a doctor who wants to prescribe these meds as sleep aids, as they think they’re too prone to being abused.

Now there are two newer sleep aids, Lunesta and Rozerem, designed for long-term use and with a low risk of developing dependency.  I haven’t tried either, but I’d definitely be willing to test drive some samples if I get the opportunity.  There’s just nothing more satisfying than a good night’s sleep!

Monday, August 28, 2006

Navel-gazing

I was navel-gazing today, literally.  I was about to jump into the shower when I noticed an odd scar just above my belly button, a scar I’d never noticed before.  “Damn cats,” was the thought that went through my head—I’m covered in scars and scratches from head to toe from the cats, although I thought it was strange that I didn’t remember having a big divot left in my abdomen.  Then a light went on in my head:  the “scar” was a hole, from my navel piercing, and my navel ring was apparently long, long gone.  Gone for how long?  I have no idea.  Maybe a couple of weeks, maybe more?  I’ve had a 14k gold ring, a “ball closure ring”, in continuously for over 10 years (minus the two days it was out when I had surgery), yet I’d failed to notice it was missing and didn’t even realize something was off as I gazed at my unadorned belly-button.  I had a “spare” ring in a jewelry box, but when I tried to insert it, one end of the hole had closed over and I had to break the skin to get it through—that must mean the original ring has been out of there for a long time.  Honestly, stuff like this alarms me—I seem to go through life in a semi-conscious haze.  I get milk out of the refrigerator and put it into a cupboard when I’m done with it.  I intend to put something in the microwave but open the fridge instead.  I pull open the dishwasher door and toss trash inside.  Despite all this, I can often do “high-functioning” tasks, and read, and learn new things, but my regular auto-pilot is very broken.

I blame the white noise.  That’s what I’ve decided to call the constant buzzing of pain, the incessant throbbing of nerve endings always calling to my brain.  I wish I could just learn to tune it out, but the pain is always there, like “snow” on a television set.  I need to find something to muffle the sound or shovel the snow or some other appropriate metaphor… either that, or invent a refrigerator with a built-in microwave, and a navel ring which never falls out.

Saturday, August 26, 2006

Employment-phobic

I haven’t had a job in over a decade.  My last real-world, go-to-the-office job ended in 1994, when I quit my job as Program Director of a radio station.  I felt physically great at that point in my life, and I went back to school full-time so I could head down a new career path.  My FMS hit me with a vengeance three years later, and that was when everything changed.  I ended a relationship, I moved to a different state, and I stopped going to school.  I would have tried to find a job despite the fibromyalgia, but I didn’t have a green card and wasn’t eligible to work in the US.  I’ve since been supported by my partner, and have helped make ends meet by doing independent contractor work from home (website design, freelance writing, etc.).  I sometimes go for days without feeling capable of working, and have often felt that not being permitted to work was perhaps a blessing in disguise.

This past Wednesday I finally received a Work Authorization card (the precursor to a green card), and suddenly, I can work out in the real world again.  I not only am permitted to work, I really must work because of our tight financial situation, and the thought of this is scary.  It’s tough enough to have to back into the big, bad world after a decade in isolation, but I also have to wonder/worry about what I’m physically capable of.  When I was younger I loved doing temp work, especially if it was in a factory-setting, yet now all I can think is that I’m in too much pain to stand all day or do too much lifting.  I think I could handle a computer job, but wonder if my brain can be forced into functioning for eight hours a day, five days a week.  I worry about failure, but mostly, I worry about being faced with the reality of what I can and cannot do.  In my head, I like to think I’m still the strong, energetic person who worked 60+ hours per week without a second thought, and it bothers me to no end that I’ve now got limitations.  For years I’ve dreamed of being something like a veterinary technician, but now that I have the work permit so that could be possible, I know I might not be able to cope with the physical and mental requirements of the job.  I’ve never had to deal with the idea that I’m not capable of achieving a goal I set for myself, but that moment is probably just around the corner.

I’m nervous, and I’m angry with my limitations… I need someone to invent a magic “feel like you’re 25 again” pill.

About

A blog about my decade+ struggle with the medical community as I've sought treatment for fibromyalgia, Hashimoto's disease, and depression. I'm not really sure if I am truly "depressed", although being in pain every day is enough to make just about anyone pretty unhappy. The blog's title comes from the name of Paula Kamen's wonderful homage to chronically ill and tired women, All In My Head. My other weblog, about fun and fuzzy things, is located at The Blog Pound.

This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 2.5 License.

Free Shipping on
Cuddle Ewe Underquilts

Categories

• Tired Girls
• FMS medications
• Las Vegas Losers
• FMS News, Hot Off the Press
• Book Reviews
• Links

Monthly Archives

• November 2008
• September 2008
• October 2007
• August 2007
• June 2007
• May 2007
• April 2007
• March 2007
• February 2007
• January 2007
• December 2006
• November 2006
• October 2006
• September 2006
• August 2006
• July 2006
• Complete Archives
• Category Archives

Most recent entries

• What I did on my summer vacation: tapering, withdrawal, and Reboxetine
• The FMS Round-Up
• Let’s try Methadone
• The CFS Diet
• Yeah, I’ve still got FMS, too
• Newsflash:  CFS can make you too tired to blog
• And, oxycodone isn’t working
• Back to oxycodone
• Fentanyl patch observations
• Fentanyl patches
• Fibromyalgia Network
• The doctor brings up Provigil
• Spoon theory
• CFS gets a new name
• The high cost of eating well

Blogroll

Related sites

Partners