Tuesday, March 17, 2009

early morning

What would *you* do?

Let’s say, out of the blue, someone accuses you of faking something.  People are accused all the time of faking resumes and job histories to qualify for high-paying positions, and their motivations are obvious.  But, what happens if someone accuses of you faking being sick, and of faking your health symptoms to cause an unnecessary surgery?  What would you do?  Ignore them?  Stay away from them?  Tell them off?  Report them to the manners’ police?  Write a blog entry that they can’t answer?  Question their intelligence?  Or, mostly wish they would go away…forever?  I don’t think there’s much worse for an FMS patient than stress, and what’s more stressful than being accused (by someone you love) of faking being sick?

 

I’ve had financial problems since about six months after my back surgery, which was almost three years ago.  For awhile, things were okay while Leigh-Ann was working for IFAW and I was working at Newstex.  However, in August of last year we were unexpectedly unemployed at the same time.  In general, we both need jobs with very flexible schedules because we never know how we’ll feel, although when we feel good, we’ll sometimes work 15 hours at a stretch.  It averages out… we may only work three days a week, but we still put in a 40 hour week like a “normal” person.  Neither one of us can stand all day or even sit all day, so we can’t just run out and apply at Starbucks (even though the delightful smell would cheer me).  I’ve been accused of spending “thousands of hours” on the computer, which supposedly constitutes proof that I don’t really suffer from carpal tunnel, either.  The truth is that when I work at my own pace I can take as many breaks as I want, use an ergonomic keyboard, apply ice packs to my hands, etc.  At home, I have the luxury of being kind to my body in way that I can’t in a conventional office setting. At home, I live a life that only Leigh-Ann sees and that absolutely no one else is in the position to judge.  How can you know how I live my day-to-day life if you only see me half a dozen times a year for a few hours at a time?

Blah, blah, blah.  I don’t know why I’m bothering to write anymore.  Apparently when I write about my health, it harms “the children” (the 18+ year old “children” who don’t live at home anymore) because they’ve had a drug addict & alcoholic in their lives.  I guess I’m supposed to censor myself so they don’t see anyone who might really be truly ill, versus someone who faked ailments to get prescription meds.  This person doctor-shopped, stole a doctor’s prescription pad, and spent time in prison & rehab, whereas I’ve had the same two doctors (my world-renowned back surgeon and my board certified pain management/physical rehabilitation doctor) for more than three years; plus, a clinical study doctor that we’ve been seeing for the past 18+ months, for a variety of clinical studies related to the side effects of our my meds (yes, we tested those constipation meds for you, and for months we made daily phone calls describing the consistency of our poop, as determined by the official Bristol Stool Scale, which is, admittedly, a little embarrassing and a lot funny…go to the link) and a study of Reboxetine for helping with the pain & fatigue of Fibromyalgia.

In fact, we were starting to see a difference with the FMS trial med, except during the double-blind trial, our doses were too high, so we suffered from some icky side effects like excessive sweating and the inability to get to sleep.  We were really excited when we’d finished the double-blind phase of the trial and could go into the extended trial that was supposed to last 66 weeks, which let us start with 4mg of Reboxetine for two weeks, then gradually move to a higher dose if we felt we needed more.  We’d just finished the second week of the trial when we found out that Pfizer was suddenly cancelling the trial without any notice, so we never got to find a dose that helped relieve some of the pain & fatigue, but didn’t cause the cruddy side effects.  Our doctor was so impressed with the results she was seeing from the trial (some people were able to get off of disability and go back to work – and obviously, some people were totally miserable because they were getting a placebo and they’d weaned off their meds to get into the trial, which is what Leigh-Ann did) that she wrote us a check at our last visit, so we could order the meds from a Canadian pharmacy (the drug is available in just about every country, except the US, because there was some kind of trademark problem here), because she knew that we were in the trial to find the “miracle drug” (that’s what Lyrica has been touted as, but it doesn’t work for most FMS patients and the side effects of weight gain, swollen ankles/feet, and extreme drowsiness really limit how many people can even tolerate taking it for a trial period) that would help us not need our other meds, and she wanted to be sure we had a chance to try Reboxetine at the proper dosage for us.  How many doctors have you ever heard of giving patients personal checks to buy their meds?  I’ll bet the answer is NEVER.  She wants to help us find the one med that will help us get our previous lives back.  Does that sound like someone who might be worried that I’m faking my symptoms?

I’ve never “lost” a prescription or needed an early refill or any of those things that drug addicts do.  I pass all “surprise” drug tests required by my pain management specialist.  I take my meds as prescribed.  They don’t alter me, and not only can a stranger not tell when I’ve taken my meds, Leigh-Ann can’t even tell when I’ve taken my meds.  (She probably can tell when I’m due for meds because of my pain complaints.  But, I put up with her complaints, she puts up with mine, it evens out).  Regardless, is it doing “the children” any favors to prevent them from seeing that a person can take prescription medication out of necessity, and responsibly?  Isn’t it good for them to see that drug addicts and abusers are a tiny minority of the population?  It’s kind of like the home schoolers who never let their kids read anything but the Bible; it doesn’t make the real world go away.  At some point, “the children” will be faced with a need for pain medication, whether from an injury, illness, or surgery, and it would be terrible if their fear of medication makes them avoid treatment.  What if one of “the children” ends up in a relationship with a person who develops a chronic pain issue?  Shouldn’t we be teaching them to be compassionate instead of judgmental?  Why can’t I be a good example for them, instead of something to be hidden away like an embarrassing secret?  Yeah, the past couple of years have been difficult and I haven’t attended as many “family events” as the family members who live within a few blocks of each other, but I figured that being ill was punishment enough.  I guess we were keeping score.  The family goes out to breakfast early every Saturday morning, and in general, I feel like crap early in the morning when we’re keeping the same schedule as most people.  Because it takes hours and hours for my meds to kick in before I even feel strong enough and pain-free enough to shower, it would mean that I would have to get up at 2am to be at breakfast by 8 or 9am.  So, that’s why I don’t go most of the time.  Once, about a month ago, they changed the time to afternoon, so we could go and at the last minute, we got a phone call changing the time to something like two hours earlier, which meant that we couldn’t go.  Also, not once has anyone ever suggested that maybe we could have a breakfast or lunch closer to where we live, to make it easier on us.

To be honest, I’ve always hated getting up early, so even if I was healthy, I wouldn’t have been thrilled with going out early on a Saturday morning when I don’t even have an appetite, nor do I feel like talking to anyone.  I’m not a morning person, have never been one, and now with being sick, my schedule is usually backwards because I start to feel good late in the evening and my bedtime is generally the time other people are getting their day started.  My last job was perfect because I made my own schedule, but it also meant I was online when everyone else was just getting to work or when the foreign clients were still awake.  So, except for my schedule being inconvenient for my family members, it works for me.  But, oh, I’m the bad child because I miss family get-togethers – never mind that I miss them because I don’t feel well.  I’m not going out and partying and blowing the family off – I’m either asleep (yes, “children”, I sleep a lot because Fibromyalgia patients generally don’t get restorative sleep, so we don’t wake up refreshed and ready to start the day like a teenager) or I’m in pain.  When we felt better, we went out more, and we even occasionally went to early morning breakfasts.  However, with the added stress of financial problems, we’ve gotten worse, so our symptoms are worse, which means we stay home most of the time.  It’s not like we go out to other places – we go to the doctors’ appts., to the grocery store, and to the library.  Whoo hoo, party time!  Before I was sick, I went to every single one of my nephews’ baseball games, no matter how cold, no matter how hot, I was there.  I don’t miss them because I’m drunk or passed out or in jail or in rehab or with a new boyfriend or because I’m scrounging around looking for someone to find me drugs.  I AM SICK!  I’m sorry if this is inconvenient to YOUR lives, but you know what, it’s a hell of a lot more inconvenient to MY life.  Hey, if you hate your life and you’re jealous that I “get” to stay home, that’s your own issue to deal with.  I’m at home because I’m sick, because I have an illness that causes pain and severe fatigue.  No, I don’t exercise like I should, because right now, I don’t have the energy to exercise.  I don’t even have the energy to eat properly or to shower regularly, so I’m sorry that I’m not the Fibromyalgia Gym Queen.  You’re going to have find yourself another FMS patient who’s feeling better to fulfill your FMS exercise fantasies.  I get severe sciatica (sharp shooting pains into my butt cheeks) just from picking weeds in the yard, which has me sitting on ice packs for a couple of weeks.

I never thought I’d ever want to cut family members out of my life, but then, I never thought any family members would accuse me of faking pain to have back surgery (check out the “Diary of Herniated Disk” for the very obvious results of my MRI, if you’d like) or faking Fibromyalgia.  I was told that I fake Fibromyalgia because Leigh-Ann has it, and like all “drug seekers”, I learned to fake the symptoms.  Oooh, how original of me, huh?  Where’s my Academy Award for fooling three different doctors?  I could’ve picked almost any ailment, and I could’ve done it at any time, but I chose something that usually comes on from a very stressful physical event (like surgery) or extended stressful time period (like, uh, foreclosure), and I waited until I’d been living with Leigh-Ann’s FMS for 9 years before I decided that it looked like so much fun.  Yes, being fatigued and in pain seemed like such a good time that I didn’t want to be left out.  I’m such a follower (insert eyeroll here) that I’d even waste $100/month on a doctor, upwards of $400/month on meds, just so I could be like Leigh-Ann.  If all I’d wanted was to get high and zone out, I could’ve spent a few bucks on Mike’s Hard Lemonade.  Instead, I spent my money on pain patches that don’t have any high, and nerve pain meds (like Neurontin & Lyrica) that don’t have any high, they all just cost a small fortune.  I can count the number of drinks I’ve had in the past two years on one hand - our alcohol gets thrown out for being old before it’s gone because neither of us particularly likes any of it, but also because we’ve been told by our doctors not to mix our medications with alcohol, so we don’t.  Yep, that sounds like a person wanting to be ill, so they can “pill pop” and get high, huh?

Finally, if you don’t believe I’m sick, oh well.  It’s not your life, so don’t worry about it.  I know the truth, my partner of 11+ years knows the truth, my doctors know the truth, and my friends know the truth.  I don’t need the stress of a family member playing doctor and second-guessing the actual doctors who went to medical school…and the people who actually see me or even talk to me.  Although, hell, even a five year old could look at my MRI and see the difference between the healthy disks and the one that’s oozed out and over onto the nerves.  But then, a five year old has better things to do than question whether or not someone else needs surgery.  Or a five year old might ask his brother, the chiropractor, what his opinion was when he saw the MRI – to help you out, so you don’t even have to click on the link, he said, “Oh, that looks bad and I don’t think there’s any way that you won’t have to have surgery” or something along those lines.  So, the family expert on backs thought I would need surgery, but nonetheless, I didn’t WANT surgery, so I tried more chiropractic and some nerve root blocks, but I just kept getting worse.  Worse, like you know when your feet start losing feeling in them?  That kind of worse.  I guess I should’ve sucked it up and lost feeling in both my legs to avoid the super fun of surgery.  Because, who needs to walk or drive a car?  Or take care of the horrible pain?  Go ahead, talk to anyone who’s had a herniated disk and ask them how it felt before they had surgery.  Hey, go ask Walt – you can get it directly from a family member who wasn’t accused of faking something.

Bah, I’m sorry to have rambled on like this for my friends who are still reading.  It’s not fair to make you read my pissed off rant at my brother who has accused me of not needing back surgery (three years later – where was he to talk me out of it then?) AND faking Fibromyalgia.  I’m sorry that this came during the week of both of my parents’ birthdays, but I didn’t start it.  I will finish it by having nothing to do with my brother or his wife – why would I want to be around anyone who is accusing me of faking injuries/illness or of damaging “the children” (who are between 18 and 24) by telling the truth on my blog or Facebook account when I don’t feel well (news bulletin, chronic pain sucks and you’re old enough to know about it, because it affects a lot of people…just not your moms, who turned to alcohol and drugs to escape something, not treat something – I’m not one of your moms, and I don’t owe anyone an apology for consistently writing the truth or for needing pain meds to manage my pain) , sometimes the truth isn’t all pretty and tied up with a bow.  I’m not going to apologize for feeling crappy.  I’m not going to apologize for blocking jerks from my email (I’m actually thrilled that until just now, what a surprise when I looked at it!, that our phone hasn’t worked for like a week – all of the lights on the modem have been flashing until just within the last few minutes; nevertheless, the ringer is still turned off) and I’m going to keep my blog comments on moderation only from now on, to keep out all kinds of spammers, related or spamming Viagra from India.  -fin

Monday, March 16, 2009

terribly early in the morning

Oh no, this baby panda has fibromyalgia

(not really, it’s just a baby panda being a baby panda - it’s so cute and so sad at the same time)

the wee hours

If Anyone Wants to Learn More About Fibromyalgia

This book is a collaboration between a Fibromyalgia specialist and a Fibromyalgia patient.  It tells people what to expect, what they might be capable of, not how to buy multi-level marketing vitamins from a “Fibromyalgia Center”, known for requiring patients to buy certain proprietary supplements in order to remain patients.  Those centers are well-known for not helping their patients do anything except empty their bank accounts.  Here’s a cheap way to get an education - The Fibromyalgia Network.  You can sit down and read until your hearts and minds are content.  There is no shortage of articles explaining what it is, what the symptoms are, what makes it worse (ahem, STRESS!), what may (not everyone responds to the same treatment) make it better, and why, and how all patients are different.  In fact, Leigh-Ann and I have completely different symptoms other than the pain & fatigue.  By the way, when I was in high school, I was writing bad poetry about things I knew nothing about, but it made me sound experienced and worldly (I thought), and I even have a song writing credit in ASCAP.  Quoting the Dali Lama doesn’t make someone insightful & deep, it makes someone a computer user.  When I was in high school, I had no idea what real pain and overwhelming fatigue were.  I would get a good night’s sleep and I would be all better by morning.  When you have Fibromyalgia, you can’t get a good night’s sleep, because one of the problems of FMS is non-restorative sleep.

If you don’t like that site, then the Wikipedia entry on

Fibromyalgia

might be the thing you’re looking for, as it comes from a wide variety of material and links out to many different sites.  None of these sites are trying to sell you anything, I might add.

Or, there’s always a documentary for just about everything, and FMS is no exception.

”One Woman’s Story” from CNN:  “Nancy’s condition progressed from mild aches and general tiredness to the point where she had trouble walking from room to room. “It was December of 1989,” recalls Nancy, now 49. “I tried to stand up and felt excruciating pain in my arms, legs and neck. I couldn’t even make it out of the room.”   The name is not the only similarity.  Although fibromyalgia is chronic, the symptoms may cycle through various stages of severity. Nancy says she slips in and out of “remission” often.  “Today is a good day,” she says, “but I never know what will happen next. At any given moment, I might experience pain that impairs me to the point of debilitation. I just have to take each day as it comes.”   And, in fact, it’s a complete mystery what each day will bring.  I’ve cancelled clinical study appointments at the last minute, although they’re used to that, after working with FMS patients on a study.  When our clinical study meds were taken from us by Pfizer, more than one patient called in, unable to make it to the office for an appointment.  Because we get paid for those visits, I doubt anyone was cancelling just for the hell of it.  I know that when we cancelled, we consulted with each other and decided that, yeah, there was no way that we could get up, shower, and drive across town for the appointment that day.  And, our doctor completely understood.

Saturday, March 14, 2009

late evening

Kitten Cam! - So, so, soooooo cute!

Video chat rooms at Ustream

early morning

Why some people can’t just exercise their problems away…

Following my rambly complaining is an italicized snippet from a new study on how exercise affects those with ME/CFS (CFS is often linked to FMS, and ME is what FMS is called overseas), and why they can exercise one day, but then don’t have the energy to keep going day after day.  This, because I was told that I should be “exercising and not taking massive amounts of pain meds”.  Because, as we all know, our families & friends are often much much more knowledgeable about our physical conditions than we are or our doctors are.  This morning, I picked up a ton of poop in the yard (it was maybe four days’ worth) and while I was doing it, I felt kind of okay.  It was nice outside and I like being able to do things.  However, when I was done, I crashed for close to 18 hours, and all I have to show for my efforts is exhaustion and sciatica in both butt cheeks.  Oh, and a clean yard.  I feel like we owe our neighbors to do as much as we can to clean up the yard, not to mention, we don’t want Eli or Cricket to attempt to “clean up” the yard with their own grotesque methods.

Oh, and one more thing - I was told that I wouldn’t have had back surgery if I’d won MegaBucks, as if being rich would’ve made the bulging disk disappear, and that my herniated disk was something that was just a normal consequence of an athletic childhood and I could’ve worked through it, if I wasn’t so darned lazy.  No, my sore knees from catching are a natural consequence of my childhood of sports.  My knees bother me daily, but mostly it’s mild pain that I can ignore.  Herniated disk pain is not only pain that you can’t ignore, it can cause permanent nerve damage if you wait too long to have surgery.  My only regret about my back surgery is that I waited so long, trying more conservative treatments, while I was only getting worse and worse.  The final catalyst that pushed me toward surgery was that I wasn’t just having pain & numbness in my left leg/foot, it started moving into my right foot.  Leigh-Ann doesn’t drive, so my “driving foot” is our only link to the outside world, and having my right foot go numb (I’d already developed a limp from losing strength in my left leg, which is where most of my herniated disk symptoms manifested themselves - it started with excruciating pain across my left thigh, then moved down to my left calf, then to my left foot) was really scary.  As soon as my right leg became involved, I scheduled the surgery.  I should’ve had the surgery four months sooner, when my back surgeon suggested it, because the only thing that happened between December/January and April was that I had those stupidly expensive selective nerve root blocks that, at the very best, gave me a little bit of relief for a day or so.  However, a friend of ours was able to avoid surgery because the nerve root blocks help her so much and for so long, so I figured I should give it a chance.  Now, I know that since the first one wasn’t a miracle, there was no need for me to have the following two.

I do think it’s possible that if I was rich and didn’t have any financial worries, I might’ve been able avoid getting FMS.  It’s thought to develop due to some sort of extreme stress on the body, and it could be either physical or emotional.  The pain and surgery might’ve been enough to tip me over the edge, but maybe not if I hadn’t had to worry about the mortgage and medical bills and not being able to work.  Regardless, I didn’t win MegaBucks, so it’s a moot point, all the stressors were there and these were the crapass cards I was dealt.  The added stress of financial problems and people thinking I’m lying about being sick, only makes everything worse.  So, living in the middle of nowhere (cheap nowhere) with just Leigh-Ann and the pets is very appealing.  I’m pretty sick of being treated like I’ve made up my illness, that if I just got up and exercised and moved on with my life, I’d miraculously be cured.  Yeah, some days I’m lucky to have enough energy to walk to the mailbox.  Although, if I could get a job working from home (like the one I had for almost two years), that would relieve some of the financial stress and I know that would make me feel better.  (employers, if you’re reading this, I can work fine from home, as long as I can work in the middle of the night, when I’m feeling my best)

In the “it would be funny if it wasn’t so sad” column - I’ve been accused of making up my FMS.  I guess that Leigh-Ann’s pain and exhaustion looked like so much fun, that I decided to follow in her footsteps.  It just took me 9 years to discover that that was my goal.  Fibromyalgia is just like being gay - no one would choose either one, because of how other people treat you when they know.  You’re either gross or a sinner for being gay and you’re a liar, lazy, or a drug seeker if you tell them you have FMS and take pain meds.  Oooh boy, what fun!

Okay, here’s the snippet I promised you.  If you have Fibromyalgia or Chronic Fatigue, you might want to go to the link I posted above, so you can read the whole study.  For those of you who think that exercise is a magical cure for all of us, the snippet is enough.

A New Approach. The Pacific Fatigue Lab researchers realized, however, that while researchers may have been asking the right questions they were asking them in the wrong way. Many ME/CFS patients can, after all, get through a single ‘workout’ or a single day or single afternoon at work okay only to ‘crash’ afterwords. Until now, though, no one’s taken a close look at the ME/CFS patient’s ability to produce energy when they’re in a crash – an odd oversight in a disease whose symptoms are so tied to activity. (Indeed, study after study is showing that many variables which test out normal or near normal when ME/CFS patients are at rest are abnormal when their systems are put under stress). With the Pacific Fatigue Lab doing a new exercise testing regime, two exercise tests two days in a row and other tests (now known as the Stevens’ Protocol) they’ve given the post-exertional problems ME/CFS patients have reported for so many years a chance to show up – and they have. Their results are both profound and disturbing. About half of the ME/CFS patients they’ve tested do, in fact, ‘fail’ or significantly under perform in the first single exercise test – they cannot generate normal amounts of energy even when they’re ‘rested’. It’s the rest of the patients that are so intriguing, though. When you give these patients a second test a day later many of them will fail as well—and fail spectacularly. The amount of impairment the Lab see’s can be astonishing - some patients suffer as much as a 50% drop in their ability to produce energy the next day. Ms. Stevens spoke of a twenty-something man whose next day exercise tests were worse that those of a normal 85 year old. In a hospital setting his cardiopulmonary exercise profile would suggest he had heart failure. Revolutionary Findings - According to modern medical science this shouldn’t occur. For decades researchers have shown that human beings, under virtually all conditions and in a variety of disease states, can take an exercise test to exhaustion, recover and return the next day and score the same the next day. It doesn’t matter if she/he has heart failure or end-stage kidney disease – again and again researchers have shown that the human body – even in extremely poor health - has an amazing ability to quickly return to a baseline level of energy. That is until now. But it’s not just that chronic fatigue syndrome (ME/CFS) patients are failing these tests, it’s also the unique way they’re failing them that’s raising eyebrows. Decades of research have shown if you a take a female of W age and have her do X amount of exercise at Y heart rate she will exhibit Z levels of oxygen consumption. Researchers have believed these algorithms are set in stone but they’re not holding up in chronic fatigue syndrome (ME/CFS) patients. That they’re not suggests that something has gone awry in the basic physiological processes the body uses to produce energy in this disease.