Tuesday, March 17, 2009

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

Next entry: That said, Happy St. Patrick's Day! Previous entry: Oh no, this baby panda has fibromyalgia

1. I wish I had something deeper to say than “Fuck ‘em!” but really, that’s all I got. FUCK ‘EM! Right in the ear!! Thank you.

   roro  on  03/17  at  07:22 PM

2. Hi Flippy,
   I found your blog through the blogpound. I found your info about avacados for dogs. I had been giving avacado to my newly rescued dog a few days/week when i first got him and noticed he had loose poo so i googled it and your site came up. since then, i’m pretty strict about what i feed my quadrapeds!

   Anyway, re: Fibromalyagia. I’ll be honest, I haven’t read your entire health history as I just got started on your blog, but have you looked into Adrenal Fatigue? I ask because I’ve been treating it on me for over a year, and Fibromalyagia is a symptom of it. AND you say you are “not a morning person” and your day gets started later in the day/evening (just like me). this could very well indicate a cortisol ryhthem problem. getting your cortisol rhythem on the right track can help the fatigue AND the pain. Dr. Wilson’s Book (Adrenal Fatigue the 21st Century Syndrome) is awesome, and he addresses CFS as well. Getting your cortisol ryhthem in order can be done w/o meds and over-the-counter cortisol/adrenal glandular help.

   Anyway, I feel your pain. No pun intended. And I’m so happy for what you do for animals in need. I wish I had the energy to do what you do! (isn’t that funny?)
   ~Wild Dingo

   Julie  on  04/01  at  02:37 AM

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