August 13, 2008

• Treat Me Like An Athlete

   

  Ok, guys, I felt mean the other day, so I'm gonna partially retract and make an apology, but not because anyone got hold of me and demanded one.  And I'm not doing this to get attention from anybody, because I've got recs and comments turned off anyway.  I made a post called 'puny' blogs, which I still stand by because I'm aspie and that's the way my head works, but I can look back and see that it was still a punch below the belt, and I feel like that's not who I am and how I operate.  I'm not trying to do ~this~.

   

   

  South Park - Timmy Vs. Jimmy AMV

   

   

   

   

   

  I'm a big believer in the whiny crabby people being the ones who survive.  I have watched others 'wisp away' under the burdens of their illnesses, and even though med info pages on the internet insist that things like lupus and fibromyalgia are NOT terminal, those others I knew have passed on already.  I'm still here, and my whiny crabby butt says hell yeah it's killing me, and dang if I'm gonna lay down and let it.  I'm not against anyone talking about their stuff on their blogs, that was NOT what the 'puny' blogs post was about.  I've got a private blog popping with my crap, and the reason it's private is because the things I say there are things that help me survive, and that includes my black side, my bad attitude, and all the mean feelings that come out on my really bad days.  I don't want to share that with the public.  To me it looks like a big tangled mess of ugly confusion, probably because I see it all the time.  To the few allowed to sub there, it probably looks more like endlessly long boring posts about being sick all the time and every little thing that bugs me, which is probably a real drag to read.  Aspies can be notoriously wordy.

   

  So it's only fair that I bring out where I'm at *right now*.  I created this blog to share information, to 'be real' about stuff like Asperger's, but as I've pointed out in a couple of posts, I feel the Asperger's is what's giving me the edge on surviving the illnesses I live with because I notice patterns and obsess over details and collect information to the point of being irritating.  So this week I'm going to assess what my situation is as of August '08, and then map out my plan of action for dealing with my stuff for the rest of the year.  If you have chronic illness and feel like you are spinning your wheels in the mud, this is how I have survived 20 years of lupus, severe fibromyalgia, and a variety of complications that include things like Lyme disease, heart surgery, and a really wacky immune system.

   

  The cold hard truth about illness is that it sux.  Just like with my Asperger's, I pretend to be 'ok' or 'normal' with my illnesses, too, because I learned real fast no one likes a whiny butt with a bad attitude.  That's the real me, but I can't be the real me without people walking away in disgust, and I have learned to hide the howling blackness so I don't scare the straights.  But the real me is the survivor.  I don't whitewash the crap I go through to myself.  I punch the virtual walls and grab myself by the collar and shake me.  There is a piece of brain that refuses to go down with the ship, and thank God I go through the really crabby stuff, because I think it has helped save my life more than once.

   

  Because, damn it, it takes a mean person to survive a mean disease or illness.  And my gut reaction is that any time I see someone else whimpering with their pain, I want to kick *them* into full blown whiny shit kicking mode, too, so *they* can survive.  This isn't about life sux so someone owes me something.  This is about Indiana Jones hanging off a cliff and climbing back up.  It's about Jack Bauer breaking people's necks after he's been tortured nearly to death.  It's about Cat Woman getting fed up and raking her claws around rich bastards.  It's about ~*~surviving~*~.  I personally know a woman who wisped away to her death, refusing to make the necessary changes in her life that would have made all the difference and possibly given her 20 more less miserable years, in spite of surgeries and medications galore.  There are a number of corporate conglomerates, insurance companies, and pharmaceutical CEOs who aren't going to like what I have to say in this post.

   

  Yes, the imagery helps.  If your senses are too delicate for this post, go away, and don't pretend to feel sorry for people you don't understand.  True story.  Years ago I was working in a hospital.  I was preparing to put my things away and step onto an elevator to move on to another floor when a couple of older ladies stepped onto the elevator with me.  They were dressed in nice clothing, had nice hair, nice jewelry, but they were not being very nice.  The lady they had come to see was on the cancer floor, and since I'd cleaned her room earlier and spoken to her, I knew she was terminal any time, and that she was distraught with a number of issues about being afraid, stuff about her family, feeling all alone since her husband died, etc.  So the ladies on the elevator (probably from this woman's church) were disgusted that they had taken a really expensive beautiful flower arrangement to this sick woman, and she hadn't even said thank you.  She had gone on and on about something going on in her family, and she didn't even acknowledge that they came out to visit her and bring her flowers.  And I'm standing there thinking- You expected her to be a gracious *hostess* on her death bed????  My God, people, the woman is ~dying~, and you're griping about her failure to say thank you for the flowers.  And that leaves so much wide open to wonder about, like how those nice ladies could judge someone in need like that and think they were better than her because they played a *social game* correctly.  They weren't really there to comfort a dying woman.  There were there for brownie points.  And I can't help but also wonder if the church paid for the flowers, in which case the nice ladies were even that much more ugly about getting that thank you.

   

  So if you've never known anyone personally or yourself lived with chronic or terminal illness, your advice is not welcome here.  (My mom used to be very eager to give others advice on vitamin E and herbs and stuff  without any experience or medical knowledge whatsoever, so I'm a bit sensitized to that kind of zeal.)  This is partly why I turned comments off.  I don't waste my time with ignorance and pretense.  It's my 'aspie way'.  I am who I am and I don't care if someone gets upset about it.  The rest of you who agree with me, thank you, but I don't feel the need to show that off to anyone by hosting it in visible comments.

   

  Ok, back to the point of my post.

   

  Everyone understands when an athlete gets hurt.  Pull a hamstring?  We'll get right on that therapy- spas, massages, cortisone shots, a full team of nutritionists and doctors.  Tendonitis in the elbow?  Don't worry, you'll still draw salary while you sit on the bench for a week being careful not to strain anything.  Scott plays fantasy baseball, and I see this constantly, players out of commission over stuff I live with every day.  Poor babies.  And now we're into preseason football games, and the guys are falling like flies over every little bitty owie.  Must be nice to be so pampered AND still get paid.

   

  And I know there are plenty more of you out there thinking the same thing.  He did *what*?  You're kidding me...

   

  I'm a really lucky person.  I have access to insurance through Scott's work.  I'm allowed $1000 a year at the chiropractor, minus the $30 copays.  I'm allowed $2500 for physical therapy per year, which I'm just lately starting on the advice of a neurologist.  Of course, we pay copays on that, too.  And I see my regular doctor at least every other month, a specialist of some kind several times a year, and have big tests like MRIs and stuff at least once or twice a year.  Copay, copay, copay.  By the time you add all those $30 copays up, I could be paying for a new car.  And this summer has been a real treat.  Between heading out my door nearly every single day for something or other on this list, not only am I spending over $100 in copays a week, I'm spending all that gas, too, because I live 20 miles out of town.

   

  But I hit a brick wall this summer.  Insurance is now arguing with my physical therapy people saying that ALL spine related stuff gets lumped under chiro, even though the PT was ordered by a neurologist and the PT covers full body strength training because it's fibro related, so my benefits are suddenly 'used up'.  So I have 5 months left to go with the very surprising announcement that everything I do for the rest of the year regarding any kind of help with staying on my feet is on my own dime, despite how much we've paid into this insurance, which is pretty substantial.  I've got a lot of phone calls to make comparing prices, because I feel I need a personal trainer to help me not injure myself, which is extremely easy to do when you have fibro, because the muscles are easy to tear and then inflame.  And here's the kicker- muscle relaxers send me into asthma reactions.  I'm allergic to the whole 'profen' family, and have adverse reactions to quite a list of other anti-inflammatories.  I had a psychotropic response to lyrica.  It's so bad even my own doctors are afraid to try new meds on me.  So I'm winging this severe fibro thing without medications excepting for a very carefully monitored narcotic (vicodin) that I can't even handle a full dose of, and now possibly without any kind of alternate medicine or therapy to help me with the severe pain that is making it really hard for me to walk.  This would include acupuncture, massage, *anything* having to do with my spine.  Nice loophole there, insurance guys.  Thanx.  Hope whoever wrote that policy up never suffers a back injury, *ahem*...

   

  Here's the dealio.  Because I have a soft tissue disorder, which is basically what fibro and lupus are, my skeletal structure and nervous system are now being affected.  If my soft tissues can't hold up my spine properly (this includes continual muscle spasms, not just muscle weakness), I get to deal with fun things like disk bulges and compressed nerves, which is what we all deal with sooner or later as we age, but I'm already hobbling around Walmart like I'm 80 or 90 on really bad days.  Last summer I had what I would have in my youthful past considered a mild spinal injury- I slipped a disk in my lower back.  But because of the complications around the way my body responds and heals, especially as I'm getting older (I'm 46), I had 3 very serious allergic reactions to key medications this year, I went into lupus flareup because of systemic response to the injury, and I literally could not walk across my house or drive without screaming pain for several months.  I have spent the last year doing everything in my power to avoid back surgery.  I am working very hard on nutrition and healing.  Why not just have the back surgery, you ask.  Well, if you missed the lupus part, and the part about severe allergies to meds, let me spell it out- I'm terrified something stupid will happen in the hospital and my kidneys will fail, point blank.  That is the number one cause of death with lupus.  And I've seen some pretty nasty 'mistakes' happen in hospitals with friends and family.  And if you know anything about being on long term very potent meds, it's that it puts *anyone* at higher risk for kidney and liver failure.  Even tylenol has big warnings, easily found on the internet.  Plus even though the rest of me is technically very healthy, if I had a lupus reaction to a slipped disk last summer, imagine the reaction I could have to the surgery.  Whee.  The last thing I need is prednisone suppressing my immune system to control a lupus flare up while I'm trying to heal from invasive surgery.

   

  And I want so badly to ask my insurance people if they'd *rather* pay tens of thousands on back surgery and the resulting recovery therapy.  It would much cheaper on them if they'd just fork out for the physical therapy that would keep me from going there in the first place.  Tightwads.

   

  And speaking of my liver there a second ago.  Last fall I was actually doing pretty good.  I had been seeing a chiro for the slipped disk, was doing strength training with his therapy staff, was actually off most of my meds, and walking without help, albeit still with quite a bit of pain and problems with balance and lifting my legs, but it was livable as long as I was on top of taking care of myself.  And then I got sick.  We had no idea what was happening.  I went from the worst sore throat I ever had in my life to the worst ear infections I ever had in my life, progressed into the worst bronchitis I ever had in my life- I really thought I was going to drown.  From there I went into severe stomach pain and told my doctor it felt like when you get canker sores in your mouth, only like it was all through my entire digestive system and my stomach bloated up real big.  By the time my liver and pancreas swelled (my liver is already enlarged from a decade of ANSAIDS), they finally got the bright idea to run specific tests, and discovered I had a strain of mono called CMV.  This strain normally hits the population like the 'crud' and most people get over it just fine.  It's one of thousands of viruses we pass around all the time.  But I'm immuno-compromised, which I think was greatly enhanced with med reactions I didn't realize I was having (warnings on the print outs said to watch for white blood cell counts...).  I went full blown for 6 weeks, and by the time it was all over I had to live with thrush and canker sores for several more weeks.  Not one thing I went through responded to any medication, and because of the liver involvement, I had to go off most of my meds all together.  I missed both Thanksgiving and Christmas, and then I had a very rare gadolinium contrast reaction during an MRI on my liver during the week between Christmas and New Year's.  They say less than 1% of the world population will have a reaction to that.  I'd had plenty of contrast MRIs before with no problems.  This year I just went completely down the drain.

   

  I finally got through it all, but one of the after effects of CMV is months of ~severe~ chronic fatigue.  And I already had chronic fatigue from fibro, so I was pretty much a limp noodle all spring, and everything I gained in the strength training on my lower back for the slipped disk was lost.  By May I had gone into a depression over the pain spiking back up and feeling so weak, and there was only one way out- get back on track with the medical team.  Around June I came up with a plan and started hustling.  Do I want to live like this?  Or am I going to let myself die on mega meds in my lethargy and pain?  It sucked, but I made my plan, started making appointments, started dragging out of the house.  I'm not getting better sitting here, I need help.  Help me get some strength back.  Help me figure out how to get past this.  I was even seeing my psychologist every week.  $30 copays, *ka-ching*!

   

  I talked to Scott about this plan, and I am really lucky he approved it.  We live paycheck to paycheck since the bankruptcy a couple of years ago, so along with all the careful budgeting around the copays, I've had to budget food.  We've been very frugal this summer, counting down to the pennies and managing not to bounce any checks.  I've had to be very cool and honest about how I'm sucking up the money again, and while I'm doing that I have to give Scott a fair trade off.  No matter how bad I feel, I get up and do the dishes myself.  I don't have a dishwasher.  Sometimes it takes a couple of hours to get it all done.  I do the laundry.  Scott works nearly round the clock, sometimes 6 days a week to help me be able to pull this off, and I am LUCKY lucky lucky to have a friend like this who is willing to give up so much time and so much of his paycheck for me.  So the least I can do is make myself do as much back for him as I can.  Every morning I sit with my private blog and plan what I'm going to make for supper, and I usually try to make it a really good one.  I've cooked professionally, I can make really nice food.  So no matter how rotten I feel, I get meat out of the freezer, line up my ingredients, and plan a time to start working on it.  Some days it takes all day long to make this plan and implement it because I have to rest so much, but I feel good about making good food for Scott when he drags in the door, so it's worth it.  Plus I benefit from the good food, as well.  If I didn't make a plan like this, I'd simply live on cereal and toast.

   

  So the plan is to budget several hundred dollars over the next 5 months in order to keep me walking.  I'm not on medicaid or SSI, and even though we pay out for really great insurance, I'm shit up a creek, as it were.

   

  And I do have some semblance of a life, too, although I rarely see anyone but Scott.  Very short insert here, I am durable power of attorney for both my parents.  My mom has been a vegetable in a nursing home for several years, and I have had to go in for meetings and sign papers and talk to staff over the phone.  My mother-in-law next door (in her 70's) broke her ankle this summer, and I've been the only one available with a car to drive her to appointments.  I have developed a deep appreciation for the way older couples and handicapped people take care of each other.  I'm learning how much of a challenge this is, and that it can be done gracefully, even when it knocks me out for the count and I suffer for it sometimes for several days.  It's possible to keep loading the human body and human spirit down like a tiny little donkey with huge sacks of burden, and still keep going, because motivation to help *others* is key to motivation to helping ourselves.  One thing I have learned through all my experiences with my pain and suffering- it can always get worse.  I'm learning to appreciate what I DO have while I have it, even when I'm miserable, because I'm pretty stupid if I think this is gonna last.  Sooner or later, we all go down and stay down.  If you are taking care of other people on top of your chronic illness, my hats off to you.  I have total heartfelt sympathy for that kind of burden, because I know from experience the emotional drain is hard enough without the impact on your physical well being.  But, it is so very good for your soul.

   

  Like that little video up there, I believe that the instinct to fight is a good one.  Our built in anger response is so much better than despair.  Anger helps us do things we don't think we can do anymore.  When everything goes wrong and the whole day (week, month, year) sux to hell and back, I go into pissy mode and say F* ~this~.  I may not be able to walk around the mall shopping with my sister, but I CAN get on the computer and do some pretty amazing things.  And I'm seeing other people doing amazing things, as well.  There are a lot of us depending on our computers for moral support of some kind when we can't get out and interact with the rest of the world for some reason.

   

  One of the things I'm getting good at is sharing my experiences.  I remember when I first started googling, looking for answers, and being so glad to run into someone here or there who had been through something similar and was able to say this or that worked.  I was desperate for relief and validation.  And now the tables are turned.  I get search engine referral hits like crazy on the posts I make about surviving my stuff.  People in countries around the world are searching for any answers they can get, and I believe that the more we share how we figure this stuff out, the better our health will become collectively.

   

  So my attitude this summer is TREAT ME LIKE AN ATHLETE.  Let's pretend I've got head to toe sports injuries and I've got a top notch team on my side.  How can I pull this together and get the best help I can possibly find to make me a healthier person?  Because I refuse to sit here and die like this!!!  I've got to find a way to assemble a team to support me.

   

  And because so many others out there don't have some of the advantages or resources I currently have to pull this off, I'm going to share what I've learned so far, because this information doesn't have to cost anything.  The sad part of health care is that it's contingent on money rolling around, and if insurance companies or govt. funded health programs don't approve of doing what it takes to really conquer stuff like fibro and get people healthy, then it's up to us 'sickies' to share as much as we can and help each other out when not all of us can get the help we need when we need it.

   

  So this post is going to get a bit longer, but I'm targeting a specific audience on this one, so if you're bored and this has nothing to do with you, thanx for stopping by, but see ya later, ok?  Don't knock yourself out unless you have a vested interest in learning what I am about to share.  This also goes for other sickies who want quickie advice and magic pills.  Or magic advice and quickie pills.  But you WILL get pill advice and quickie magic.  How's that?

   

  The first thing I want to talk about is meds.  I think they are great tools when something knocks you down.  But long term meds do some pretty nasty things to your body.

   

  Examples:

   

  10 years of amitriptyline amplified a heart rhythm problem so dramatically that I wound up having heart surgery.  *After* I got off the medication, I found out there was a connection.

   

  10 years of librax  round the clock shut my bladder down.  That last year I was begging for monthly UTI tests because my bladder was always full and I couldn't pee.  The test all turned out negative.  Once I stopped that med, my bladder went back to normal.

   

  10 years of Ansaid and other anti-inflammatories gave me a condition called 'fatty liver', and my liver is enlarged.  I get sick very easily now.

   

  10 years of being a guinea pig on handfuls of other meds such as feldene and oxycontin have made me so hyper responsive to meds that I go into asthma reactions over nearly every new thing I try now.  My list of antibiotic allergies is pretty long, too, AND I react counter intuitively to aggressive antibiotic treatment, which can send me into lupus flareup.  I'm not going to keep listing my med reactions here.  It's stunning how many kinds of pills I've tried.

   

  And having been on both sides of the fence for 20 years, my fibro does NOT feel any worse overall WITHOUT meds than it does WITH them.  Hmm...  Something to think about.  Actually, that's how severe my fibro is, I've developed such a high tolerance for fibro pain that meds are a total waste of money, because all they do is screw with either my body or my brain.  My rheumatologist was shocked I was walking around 'untreated' last fall.  An urgent care doctor was amazed I was able to walk around (albeit slowly) on a severe hamstring *without* meds last spring.  I'd actually gone in to check for what I thought might be a blood clot in my thigh because the pain was so weird and it hurt to put pressure on it sitting anywhere for several days.  Imagine that- I have a severe hamstring and I'm living my life, but an athlete gets a hamstring and everyone craps their pants like it's DISABLING.  omg.  Give me a *break*, guys.  Walk it off.  I have to.

   

  Along with the usual tender points, I have what is called fibro of the chest wall.  That's a really good article, worth your time.  I have gone to the ER numerous times over the years, many times in ambulances, for what feels like heart attacks or pulmonary embolisms, but it's really severe tendonitis around the ribs, collarbone, and breastbone, which took us years to figure out.  Because of that and lupus, I've also been treated for pericarditis and pleurisy, which is inflammation of the linings around the heart and lungs.  And thanx to all that pain and confusion, it's been really hard to tell that I'm actually having asthma reactions to some of my meds, which is ~bad~.  (I'll probably never be able to tell if I'm having a real heart attack until it knocks me down and turns me blue.)  If you are taking prescription meds for 'allergy' symptoms, here's a good one for you.  Skelaxin, in *me*, causes an instant hard and fast sinus drainage and croupiness that lasts about half an hour.  I was on it for 6 months last year, not realizing that the skelaxin was causing my croupiness, which I blamed on allergies and drank a lot of benadryl for.  Because the skelaxin was affecting my mucous output and the benadryl was suppressing it, my fluid balances throughout my body were thrown way off.  I wound up spiraling into weepy depressions that I FINALLY connected to the skelaxin.  I went to both my doctor and pharmacist about it.  They assured me that skelaxin is the safest muscle relaxer out there, and there are virtually no side effects, even though the printouts strongly caution against being on it longer than 3 weeks.  Well guess what- 

  Skelaxin Drug Interactions - Drugs.com

  Skelaxin (Metaxalone) drug warnings and precautions

  SKELAXIN Oral Drug Interactions

  And there are more links in another post I made called 'Lyme, Lupus, and Asperger's'.

   

  I had started lyrica near the end of being on skelaxin for 6 months when my immune system crashed on me and the CMV took me down for 6 weeks, involving my liver.  If my doctor had checked my liver enzymes before trying me on the lyrica, we might have seen I was already having problems.  We'll never know if the liver enzymes went beserk *before* the CMV or not, but they were definitely out of the normal range *after* I got sick.  In 20 years I'd never had an adverse liver enzyme test.  My old doctor checked me 4 times a year without fail because of all the meds I was on.  The new doctor (insurance changed) didn't monitor me that closely, operated more on the every 6 months thing.  THIS is why it's important for patients to not only read pharmacy printouts, but to monitor ALL changes and reactions to every new medication, AND keep track of regular blood workups.  I could have died from the CMV.  If you are popping meds and still feeling crappy, start reading your printouts, check the drug interaction sites on the internet, and keep a record of the times you take your pills and how you feel afterward.  See if there is a consistent pattern.  You might actually be saving your own life.

   

  After not taking skelaxin for 9 months, I took one the other day out of desperation and instantly recognized that I was having an asthma reaction.  Now that I'm off all those meds, it's ~easy~ to see the reaction.  When you're on handfuls of medications, it's very difficult to tell what your body is doing.  So if you are blogging about being sick and rattling off a list of meds and saying you still feel like crap and even mentioning that your doctor is treating with more meds for other med reactions, PLEASE take me seriously here.  Don't think "it won't happen to me".  You don't get any warning that somehow lets you know "it's time to stop doing this now because you're going to die in the next 24 hours."  You have all this information at your fingertips.  Look up your meds online, study them, and check what other people are saying about them on drug interaction sites.  It's YOUR body.

   

  Ok, now that I've pointed out that you feel just as crappy on your meds as without them, let's talk about the pain scale the medical community uses.  It's stupid.  If you have fibro, you will ~never~ NOT have pain.  I have figured out that giving them a little pain number to write down is NOT a good diagnostic tool for monitoring how I'm doing with my meds and my fibro.  In fact, I think the pain scale makes it all worse.  Having more pain?  Try this pill.  Having less pain?  You must be doing better, even though you are still having so much difficulty managing to walk around and sit in chairs and still can't sustain a 20 minute workout.  The pain scale is a copout for not having to pay attention to the rest.  Plus, I've heard patients tell doctors in calm quiet voices they are at a ten.  Excuse me, if *I'm* at a ten on the pain scale, I'm either weeping, puking, or fainting.  If I can sit up in a chair and calmly state my pain level, I'm having a really good day.  So don't give me that pain scale crap and explain how it's all based on our subjective perception.  That turns pain into a psychological problem, and it pisses me off.  ASK me if I was able to climb stairs without having to grip the bar fearing I'd lose my balance and fall to my death because I couldn't control my legs properly with all the tight muscle contractions going on, but don't ask me to rate how I feel sitting in chair in a doctor's office.  Or ask me about my fatigue scale, or my anxiety scale, or my depression scale.  Ask me if I was able to get through my morning without dropping half my breakfast on the floor while I was trying to assemble it.

   

  Doctors fear me.  They cringe.  They throw prescriptions out into the hallways hoping I'll go away...

   

  Which is why I've put a lot of effort into learning to communicate well with a medical team that I personally assemble.  I had a psychologist help me with this because my Asperger's makes it easy for me to get off track and lose focus.  I am 'easily led' with questioning, and if I don't stay focused, I simply just answer questions that go way off track until doctors are on a completely different page than I am.  And when I feel like a doctor hasn't listened, I ask either the psychologist or another doctor to help me get my mind on what I need to be specific about in order to get what I need.  I'm learning that when I get very specific, I get much more satisfying results.

   

  Case in point.  I was referred to a neurologist last fall for help with cranial nerve pain, which has become extremely severe for months at a time over the last 5 years.  She asked me several questions and I wound up with a free sample for migraine medication in less than 5 minutes.  I was confused and frustrated that it was suddenly 'over', and felt like she hadn't spent quality time with me, and she was a *specialist*.  After talking to the psychologist about that, I was able to see that the neurologist had directed the questioning and prioritized my complaints.  I had been so vague (in her eyes) that I didn't even get much in the way of an exam.  So during a follow up I stayed focused.  Told her first thing up front that I would rather investigate the cause of my pain and then find alternate ways to treat it, because I have extreme pill phobia from so many med reactions.  That one sentence made such a world of difference.  I was clear about my intent and my needs.  I was able to tell her that I believed my 7th cranial nerve was either inflamed or damage on the left side and was the cause of my headaches.  She asked if I'd be ok with an MRI, I said only without contrast, since I'd had the gadol reaction.  Then she offered cortisone shots for my head (~egads~), and I said that since my headaches were more severe in winter (cold) and since cortisone shots are limited, I'd prefer to save those for later if I could.  She said all I had to do was call her office to set up an appt at a pain clinic whenever I was ready.  Then she examined me for real this time, and I felt much better walking out of her office.

   

  Along with that is the documentation that will follow in her report.  I don't push for meds.  I have a clear idea of my pain tolerance and needs.  I am aware enough of my body and familiar enough with medical terminology that I can discuss my medical problems with a specialist on their terms.  I didn't just sit there like a lump waiting for her to 'fix' anything.  I accepted that this is something I live with, and I would like help when the going gets pretty tough.  This is the kind of attitude that goes a long way with doctors.  You can go back for years and years and keep taking whatever pills they throw at you, or you can take your stuff into your own hands and make your own decisions about your health care.  I was also very clear about letting her know I also see a chiropractor, who is very interested in anything my doctors find out, and that I'm interested in other kinds of help, like physical therapy, over that of surgery to resolve pain issues.  I am very proactive with my health care.  I tell all my doctors they are part of a team I've assembled on my own, and that I share everything between all of them.  I've never yet had a negative reaction to this.  A couple of doctors have even praised me for trying to do all this without asking for medications, and will bend over backwards to help me get what I need.

   

  It takes practice learning to talk with doctors this way.  Some of them seem a little intimidating, or a little cold.  Some of them seem a little impatient or distracted.  They are human, working long hours, and who knows what personal problems they might have on their own minds.  My old doctor (before the insurance change) knew me so well for so long (we're the same age) that we discussed our allergies, our children, music we liked, all kinds of stuff.  Having Asperger's, I've had to work really hard to accept change, new doctors, learn to communicate all over again with new people, etc.  I understand this is a real challenge for ALL patients.  You go in not feeling your best, hoping they don't think you're a whiny hypochondriac sucking up for attention, feeling awkward if you have to put on that little gown, feeling rushed and holding back the tears or anger, basically ridden with anxiety over the whole thing plus the feeling there really isn't any hope in all those piles of pills and this is all a big waste of time while you beg for help.  I know, I've been through all those feelings.  It's really hard not to leave the building sometimes in a big pit of despair.  Especially when everything you say results in trying another pill and not feeling truly validated as a scientifically observed patient.

   

  So set up your goals before you go to the doctor.  Ask yourself what you really *WANT*.  Don't worry about whether it's possible or not (I know a *lot* looks impossible when you are bogged down with chronic illness), just say "I want such and such".  Be specific.  Be honest.  "I want to stop crying all the time."  "I want to be able to go out and eat lunch with a friend and not come home with a migraine."  "I want to be able to drive without being pulled over and lectured by highway patrol about prescription meds being as illegal as alcohol on the highway."  Yes, I've been pulled over a few times...

   

  There are a LOT of us out there on prednisone, narcotics, handfuls of stuff that cause drowsiness, even opium patches.  (Hey, *I* want one of those!   )   We take this stuff in the hope and belief that they will improve the quality of our lives.  What we really use them for is to be able to keep grinding ourselves into the ground while we ignore or shrug off the fact that we drink and smoke, eat junk food and suck down the caffeine, or even starve ourselves trying to lose weight.  We expect the pills to do for us what we won't do for ourselves.  I personally know a disabled woman up the road from me (my age) who has already died from this attitude, and another disabled woman (also my age) who has aged twenty years in the last ten with this attitude.

   

  So let's ask ourselves- just what IS 'quality of life'?  Does that mean being able to hang out at a water slide all day getting sunburned with a thousand other people?  Does that mean being able to do what we want without consequences?  It's hard not to be jealous of people who can do anything they want with and to their bodies without (seemingly) being stuck with debilitating or even life threatening consequences.  (A 30 minute sunburn will land me in the hospital in full blown flareup, while I welt out all over my body.  Even just 15 minutes of sun breaks me out in rashes and welts that make me miserable for hours.)  I've seriously thought about what quality of life means for the last ten years.  And I think I have narrowed it down to something definable.

   

  Quality of life doesn't mean pain free.  Cross that one off your list.  We live in the pill poppingest generation ever on this earth, with the idea that all we have to do to 'keep going' with our lives is pop pills.  Can't sleep?  There's a pill for that.  Stomach hurt after a big meal?  There are gobs of pills for that.  Get a boo-boo on your knee?  Heck, there are special medicated bandaids for that.  (I'm allergic to both the bandaids and the sulfa in the ointment, go figure.)  There is not a thing that can happen to you that they haven't come up with a rescue for.  Teeth not white enough?  Here, put this sticky thing on.  It doesn't take long before two tylenols just don't cut it, so you take a third.  And it doesn't take long after that before you chunk a couple of advil down on top of it two or three hours later.  We've really got pain 'management' down to a science, but what's scary is what all people will pop into their mouths without once reading the cautions, warnings, or pharmacy printouts.  I know people who pop two darvocets because one "isn't working", and then turn around and accuse someone else of abusing pain meds because he went over the edge and got a little scary on everybody with an uber combo of too much xanax and oxycontin.  They don't see they are on the same path he is.

   

  Want some *real* fun?  Toss vicodin, skelaxin, naproxen, librax, and prednisone into a blender and throw some benadryl and a big cup of Starbucks 'bold' coffee on top of that.  And if that doesn't work, here, try some lyrica.  You should have seen me last summer.  I was wasted out of my skull, driving 70 mph down a 4 lane highway, stumbling into the pharmacy with a handful of prescriptions, and NO ONE BLINKED AN EYE.  Now, go check the drug interaction sites online and see just how scary that is.  And why is this ok?  Because PAIN is NOT ok.  Not in our society.  Pain is ~*bad*~.  We're a bunch of wimpy ass babies with our 'pain levels'.  You know what?  I kick pain's butt.  I've lived with it for 20 years, it's ~not~ going away, and when it takes over, I start making decisions about my life.  I have emergency meds for pain crisis, but you have to understand that pain CRISIS is literally crawling because you can't walk.  Pain crisis is not being able to eat all day because the pain and nausea are so bad.  Pills are great tools for pain crisis.  But when we start talking long term pain 'management', that's where we slide down a muddy hill into a huge crevice and get sucked down into a torrent and wonder how we're ever going to get out.  Because you can't 'get out' on pills.  Do you LIKE having fibro and whatever else is going on with your body?  You can definitely make it worse on long term prescriptions.  I certainly did.

   

  The thing is, none of that solved my problem last summer, which was not being able to walk because of a compressed nerve in my lower back and severe fibro freaking out all around it.  I could have stayed on all that stuff for months, the doctors would have been happy to just keep refilling my scripts.  I was able to walk, yes, but could I really LIVE like that?  Was that REALLY improving my *Quality Of Life*?  Hell, no.  It was like putting  a bandaid over a broken bone.  My God.

   

  So, steeped in drugs and swimming through a surreal sea of bizarre, I decided to prioritize my wants and needs, and started making phone calls.  Over time a chiropractor decompressed that nerve enough for me to get off most of the meds.  Over more time he helped me with strength training so that I could hopefully avoid slipping that disk again.  I felt blissfully validated, I felt hope again, and I noticed it took *months* to make measurable progress.  It took dedication and discipline (and a whole lot of crabbiness) to get out of the house in that much pain and keep at it, but I did it because 1- I felt like the pills were killing me, and 2- I did NOT want to be stuck that way the rest of my life.

   

  I don't know if you guys have noticed, but ATHLETES get top quality nutrition.  So do most farm animals that wind up giving or being consumable product.  You wanna drink milk from a cow that eats candy bars and potato chips?  You want to bet on a racehorse that smokes cigarettes?  You wanna watch March Madness and Superbowl with a bunch of wheezy wimpy guys running around on beer and whiskey instead of gatorade?  No?  Why do we require such high standards in the bodies of other beings that we EAT or BET ON, yet we don't require these same high standards in ourselves?  That lady I mentioned who lived up the road from me and is already *dead*- I asked her point blank one time if she'd give up her diet coke if she knew she'd live an extra ten years.  She laughed and said no, she could ~never~ give up her diet coke.  She didn't make it even 3 more years.  MY AGE.  At the time, she wasn't even 40.  Since then I've seen a number of pretty convincing articles about fake sweeteners causing severe long term health issues, and yes, even death in people who have lupus and fibro and other complications.  But once the 'truth' gets out, people will be lining up for the biggest class action lawsuit you ever saw against the soft drink companies.  You think the big CEOs are hushing this up?  ~Hell~ yeah.  They're blowing the 'health nuts' off the same way the tobacco companies blew off second hand smoke.  If you don't think this is worth taking seriously enough for your own health, and you are still feeling crappy on all your meds, you get what's coming.  And what's coming is death.  It might be slow, or it might be this year.  Sorry, kids, but this is me not whitewashing this crap to myself.  And I'm still alive, I'm still mobile *crossing my fingers*, and I intend to be alive and mobile for another 20 or 30 years.

   

  I have a long list of info and links on nutritional issues in my article called 'the aspie stomach ache diet'.

   

  The easiest way to get off meds and get past addictions is to first start loading your body with the nutrients it needs to repair itself.  I learned something new this summer that seems to be making a big difference.  My chiro noticed my muscles aren't responding to therapy the same way 'normal' patients do.  He grew concerned that perhaps I'm not digesting protein very well and suggested trying a specially formulated protein powder designed by doctors for better absorption, called Dream Protein.  This is not the same kind of protein mix athletes use for muscle building.  This is ~better~.  I was noticing a difference within a week of starting it, which had never happened with vitamin supplements.  I put half a scoop into my homemade hot chocolate every morning, and it makes the best tasting hot chocolate in the world.  By the way, I did some research on cocoa-- a daily spoonful of cocoa is as beneficial as high antioxidant high bioflavanoid fruits, and very healthy for your cardiovascular system.

  In Search of the Healing Power of Chocolate : NPR

  Healthy Eating: Chocolate Has Healing Power

  Just remember, premixed hot chocolate contains high fructose and corn syrup solids, which are also coming under scrutiny for health problems, so stick to your own sugar and just mix up your own hot chocolate at home.

   

  I've gotta add a big no-no in here.  Do NOT think you can replace good nutrition with a handful of vitamins and herbs.  This is real, and very sad.  My mother was a health nut all her grown life.  She developed diabetes and high blood pressure and refused to take meds to treat them.  She was determined she could control it all with vitamins and herbs.  Over time as it all got very much worse, she ~stopped eating~ but continued to take the supplements by the handfuls.  She went to live in a nursing home a few years ago in her early 60's, her brain ravaged and riddled with hundreds of strokes from the diabetes/hypertension combo.  Her vitamins and herbs did absolutely nothing to stop disease progression.  If you are skipping meals and eating poorly and thinking that popping vitamins will do the trick, you are so in for a sad ending.  I'm really sorry to see this idea run so prevalently through our society.  Our bodies are made to eat real food.  They are made to eat a variety of plants and meats, and are very efficient at pulling what they need out of them.  Every time you substitute snack food for real food, you are cheating your body of stuff it needs to take care of YOU.  (It's stupid to gripe about the high cost of cashews and turn around and buy a bag of tortilla chips for the same price instead.)  The sad thing about our bodies is that they will literally grind themselves to death for our silliness.  They try to warn us and say they aren't feeling well, but we pop meds and vitamins and keep grinding them down thinking WE can do anything we want.

   

  Aside from nutrition, it's vital to stay mobile and flexible.  You can't sit in a recliner half your life saying you don't feel well enough to do something.  You lose muscle mass and become weak.  Your body loses its ability to efficiently produce energy.  One thing about fibro is that it's dang hard to get up and walk or bend or reach or whatever, and sometimes even just the *thought* of having to spend 20 minutes exercising is exhausting.  I'll tell you a secret.  Farmers freak out when their animals lay there.  Animals DIE real quick when they lay around and don't move.  If you've got a cow or pig or chicken just laying there, death is written all over that animal if you don't figure out what's going on with it and either treat it or get it to get up and take care of itself.  Because if that animal won't eat or drink enough, it'll die.

   

  I know, you're going Whoa, wait a minute, I see tv shows about abused and neglected animals, they get bone skinny and haven't died yet.  Yes, but they're usually still on their FEET.  Get it?  Big difference.  So if you have fibro, it's very important that you get up on your feet, piddle around the house, mosey around the yard, walk up the sidewalk and look at someone else's yard, SOMETHING.  It's important to keep reaching up into the cupboards no matter how hard it is or how much it hurts.  It's important to bend down to pick a kleenex up off the floor.  It's important to keep letting your body know you want to USE it.  Every time you use your body, it does all the biological things it was born to do.  If you 'protect' your pain by not moving (been there, done that), it not only doesn't get better, but you start losing mobility.  This is one of the biggest deals you see in hospitals and long term care facilities.  Get the patient up, have the patient move around, because sitting around makes you more prone to blood clots, atrophied muscles and contractures, and overall weakness.  Go visit a nursing home sometime and watch how much they try to get some of those people moving around.  Despite my mother's state, she's outlived much more aware people in other beds next to her because they lay around and die of pneumonia the first year they're there.  My dad gets my mom up in a chair and pushes her around, takes her outside, helps her eat lunch, and I'm thinking you know, if my mom can keep living with just that little amount of extra effort (actually a big effort for my dad), *I* could live a really good quality life just by moving around as much as I can while I still have the chance.  Quiet little ~bing~ there.  THAT is what quality of life is.  Being able to move around.  If I want quality of life, I have to work for it.  No pill on this earth can do it for me.  If I let pain dictate what I can and can't do, I lose.

   

  I had a contracture in my right arm when I was only 36 years old.  I thought it was embarrassing.  It didn't hurt at all.  I had to work on stretching that out and exercising my arm for several months before it finally released.  *That* is uber fibro.  You see older people in nursing homes with their arms drawn up, curled against their chests.  Imagine that happening in your 30's.  Yeah.  Scary.  I'm not ready to go down that road yet.  I had to learn how to take care of that muscle band.  If I had ignored it...?  Who knows.  I might have lost some ability to use that hand.

   

  Athletes can't perform well with muscle cramps.  Muscles that are cramped up are more likely to tear or fissure.  A fissured muscle is very painful.  I once fissured all the muscles attaching to the right side of my sternum simply by twisting around in a KFC drive through too fast to see if cars were coming before I pulled out.  I cried all the way home.  It was very sudden and felt so gross to feel those tiny tears just rip up along the bone like old fabric, and it definitely made it harder to use my chest muscles for several weeks.  Some people think fibro is one of those fashionable illnesses that everyone is jumping on for disability.  Trade you bodies for a week.  Let's see how well you handle this crap.

   

  Anyway, one of the first things they give athletes for both prevention and treatment of muscle cramping is WATER.  *Hydration*, people!  Same with racehorses, farm animals, pets.  WATER WATER WATER.  If you gave animals nothing but coke and pepsi products they wind up at the vet so fast it would make your head spin.  Yet that is about all some people I know drink for their fluid intakes.  Helloooo.  Are you stupid?  If you have a chronic illness and you are drinking a liter or two of pop a day, *dang*.  I challenge you to an experiment.  And I know I can be ornery like this because I used to be pretty addicted to coffee and coke products.  Cut the pop completely out for one month.  Don't cheat.  Don't substitute koolaid or other sugared or fake sweetened drinks.  Drink WATER.  Now try going back to your liter or so of pop a day with no water.  You will be sick so fast you'll nearly puke and get terrible headaches.  Do it.  I dare you.  Try proving me wrong.

   

  Want some relief from fibro?  Drink more water.  You may still have the same pain level, the muscle cramping, but you might just find that your mobility and flexibility capabilities magically increase.  You might just discover your headaches lighten up a little.  You might even find out you don't stay sick as long when people pass those germs around.

   

  Btw, stop sucking on those little zinc lozenges for colds.  Look up what a good zinc imbalance can do to the other minerals in your body and quiver.  Ask yourself who is making the money here.  The more you suck that zinc, the more someone at the top drives around in a big fancy car to a private golf course.  Start questioning the whole pharmaceutical industry taking advantage of your ignorance when nutrition classes say the opposite.  Ask yourself why people in Canada and Sweden get taken more seriously for illnesses while U.S. doctors have to *ask* insurance companies for permission to run tests on you.  Ask many questions.  I think doctors are terribly frustrated and ethically can't say that to their patients.

   

  Ok, so you're monitoring your meds now, you're eating quality food instead of greasy salty sugary crap, you're drinking water, you're moving around a bit more.  Anything else?

   

  Yeah.  Stop worrying that you're not getting enough sleep.

   

  What?!?!?!?!?!?

   

  I have some of the most severe insomnia of anyone I've ever met.  I've slept very little over the last 20 years.  Oh, I agree sleep is important.  My goodness, I've wanted sleep so bad I could have killed for it.  Thank goodness I never did.

   

  The doctor tried me on all kinds of stuff.  You name it, I took it.  My worst nights I'd get 2 hours of sleep tops, and not all at once.  My very worst nights, none at all.  My best nights ranged from 3-4 hours a night, and not all at once.  I have a sleep disorder where my alpha and delta brain waves crash together, and I come bolt awake out of a dead sleep without transition.  Just like that.  It's miserable, it's dangerous, it wrecks your health, and here I am telling you not to worry about it.

   

  The more you TRY to sleep, the more you're messing it up.  Use alcohol to sleep?  Sorry, you're screwing yourself.  Use pills?  Same thing.  How do I know this?  I spent a decade trying.  On top of needing the sleep, you put something in your body that tries to force it to do things.  I used to make a joke about benadryl.  There is a warning on the label that it may cause excitability, and I add "especially at 3 a.m. on an empty stomach".  Some people just can't take sleep aids.

   

  So what do we do???

   

  The worst thing you can do is fight it.  You're already cranky because you need sleep.  You try to make yourself sleep.  You look at the clock.  You get upset.  Your adrenaline pumps up because you're upset and then you for sure can't sleep.  My sleep disorder was so bad that I could take handfuls of prescription meds that make you drowsy and zip around work like I was on a load of caffeine.  I hand ~one~ little pill to a coworker and they come back griping that they slept like a zombie for 12 hours and could barely get up for work.  That's the thing about fibro.  Our brains are different from normal people.  We seem to be hard wired for incoming sensation (which my Asperger's amplifies), we are super easy to wake up, and we're very jumpy because we're already so miserable.  I never could understand how parents could sleep through their kids getting up and walking around the house doing stuff.

   

  Over time I learned that I could control my relaxation level.  That was an important first step toward learning (or relearning) to sleep.  I can't use the typical relaxation noises and whatnot.  I actually need stimulation.  I need a light on somewhere, the tv on, traffic outside my house.  I'm actually more relaxed when I know the rest of the world is turning.  If the world shuts off and things get quiet and dark and I'm *supposed* to sleep, I get wired up and antsy.

   

  Thanx to the Asperger's, I have to have my little routine every night.  I don't stick to a rigid schedule, but I do stick to a rigid routine.  Something as simple as plugging in my cell phone, getting my blood pressure pills ready for the next day, and filling a glass with water does me more good than anything else I've ever tried.  Same order, same way every night.  That and a little fan in the room for noise.  And over time I have learned to ~enjoy~ the awake time when my eyes pop open in bed.  I don't lay there and worry or think about what I have to do or a doctor's appt or anything like that.  I've learned to go back over memories and visualize things I enjoyed.  I love the smell of new alfalfa hay after sunset when the day cools off.  It's amazing how reliving a sensation can focus the mind and calm the body.  And I free drift through stuff like that that pops into my head, and before you know it I'm dreaming.  I'm half awake dreaming, but at least I'm REMing, which they say is important.  And I figure if I can get one or two hours of 'dead' sleep a night, I'm doing really well, so I just don't worry about it.  I figure if I have a bad sleep night, I have a slow day the next day.  Who knows, maybe I'll actually get a nap.

   

  The problem with sleep is that we as a society have come to think of it having to be contained in a little slot of time, or it's ~bad~.  Why is it bad?  I've been coached on 'sleep hygiene', and the importance of regular hours, not getting up to do things, not exercising or reading or playing games just before bed, not eating big meals or stimulating drinks so many hours before bed, etc.  You know what?  People didn't sleep 7-8 hours straight through a thousand years ago.  They didn't have big soft mattresses and alarm clocks and coffee makers.  They slept when they were tired.  Nowadays we aren't allowed to sleep when we are tired.  We have work schedules and school schedules and tv shows and kids and pets and vacations and holidays to prepare for, and they say that Americans are getting so bad about shaving their sleep time down because it's seen as 'wasted' that our entire nation is suffering sleep deprivation.  So now we have all these rules about not allowing ourselves to nap in the afternoon so we'll sleep better at night with our lunestra and ambien and advil pm, etc.  You know what?  That's crap.

   

  Once I learned to let go of 'scheduling', I started sleeping.  ~Without~ 'sleep aids'.  It took a few months, but I actually get at least 5 or 6 hours a night pretty regularly now, plus a nap here and there.  I get up several times a night and *don't worry about it*.  There's nothing wrong with needing to get up and go to the bathroom, for crying out loud.  I drank a lot of water, I need to pee.  Gimme a break.  Nowadays that's a big deal, like there's something life threatening or scary about needing to get up and pee at night.  I've done it all my life.  What *I* think is scary is people who can sleep like logs for hours while their houses burn down.  It's just not normal not to be able to wake up and take care of a problem.  Over thousands of years people have had to be ready for bad stuff in the middle of the night, right?  Wolves, tribal warfare, weather...  Someone please tell me where in the world this 8 hours a night thing came from and why I should feel worried that I'm not getting it.

   

  Another big help is to RELAX.  Go somewhere (outside, preferably) where there is no tv or radio, don't take your music out with you, just lay back in a chair and stare at the sky or the trees.  Completely disengage your mind.  Don't think about stuff like what's bothering you or a list.  Just ~stare~.  Spaz out.  Drift out.  Don't feel guilty, don't time yourself.  Just let go so your mind can free up that energy and use it for other things.  Your brain is a very busy place.  Aside from *you* being jammed in there, there's a whole network of stuff running unconsciously, like a big factory and shipping industry, a huge communication network that has nothing to do with *you*.  Let your body have your brain without you in the way, ok?  If you stay in the way all the time with worry and emotions and continual ups and downs about 'life', your body has to deal with all that on top of trying to stay running smoothly for you.  So give it a break, give yourself a break, and go stare at the sky or the trees or something.  If you've slept really crappy the night before, this *helps*.  I've been told by medical staff that I have amazing relaxation techniques, even though I have anxiety disorder.  Learn to disengage once in awhile, and you will be doing yourself a huge favor.  I don't even bother calling it meditation.  That sounds like work to me.  I'm too lazy to meditate.

   

  Another important thing is to simply rest.  If you have fibro and you still hold a job (I pulled that off for many years) and it's your job to do the grocery shopping and the laundry and whatnot, go sit in a recliner or lay on a couch.  Just *because*.  You do NOT have to apologize to ANYONE for having fibro.  (I tried to hide it and made excuses for it for years.)  Don't do your kids' homework for them, don't yell at anyone for the house being dirty, just ~rest~.  It's not a sin to get off your feet and not care for a little while.  You can grind yourself into the ground while you shovel pills down, but in the end, what does it get you?  My dad once told me, "If I knew then what I know now, I'd have got more rest."  My dad worked hard all his life with very little enjoyment for all his labor.  In the end he went bankrupt and lost everything.  If you knew that everything you were working for could disappear in a couple of years and it wouldn't be there anyway, would you stop and take a break?  Or would you keep grinding yourself into the ground to keep having things, keep going on vacations, keep running around spending money.  In the end, the money is gone anyway, and you still hurt.  Was it worth it?

   

  Athletes get paid top dollar to destroy their bodies and live in pain the rest of their lives.  Was it worth it?  We all choose our stuff.

   

  Ok, I'm going to wrap this up.  This is way long, and I'm sure if anyone is still reading this they're wondering how much longer I'm gonna go on about it.

   

  I'm a big believer in creating our own mythologies as a way to become proactive in building or rebuilding our inner emotional and spiritual strength.  I'm a fan of 'the industry', but not a fan of Hollywood, particularly.  In being a fan, I've taken the opportunity to learn from those who have spent their lives caught in a spotlight.  How would I be handling *my* life if I were in a spotlight?  Would I be someone cool to look up to?  Would I be insecure and messed up?  Would I be doing any better with my fibro like that than I am in my own house or apartment or trailer right now?

   

  I grew up with these guys all over the media.  They don't know me, but I know them.  I know them enough for this to have a great deal of meaning for me.  This season has been hard to watch, this episode broke my heart.  This is basically what we go through on our meds with fibro, too, only we think we have a reason.  After two decades of piles of bottles of meds, all I take now daily is my blood pressure med, my thyroid med, my birth control pill, a low dose aspirin, one librax in the morning (anti-spasmodic), and 1/2 vicodin twice a day.  I'd rather take the pain I live with any day than the stuff all that other that crap does to my head and my body.  If there were a reality show following someone around with fibro, I think it would be just as loaded as this show right here.  I think fibro patients are led to become addicts caught in a whirlwind of pain and depression and no hope of getting out.  Until we as patients stand up and start rejecting this idiotic approach to an already devastating problem, we're going to become more and more a nation of medication abusers, with the pharmaceutical companies and doctors being the pushers keeping us hooked up.  Until we reevaluate what pain and quality of life really mean to us, we will continue to lock ourselves in a closet of despair.

   

  The Two Coreys season two episode nine part one

   

   

   

   

   

  The Two Coreys season two episode nine part two

   

   

   

   

   

  The Two Coreys season two episode nine part three

   

   

   

   

   

   

   

  And I grew up watching the industry.  I'm technically on the outside looking in, but I love the way I can find inspiration in stories and characters and the other fans who love it, too.  It's interesting that another person coming out of that era is inspiring the entire ~world~ right now, inspiring the fans.  Stuff like this video unlocks so much potential inside myself, inspires me to focus out of my stuff and be more than I am.  "I get knocked down, but I get up again.  You're never gonna keep me down..."

   

   

   

   

   

   

  If I have nothing left on this earth but my illness, then I am here to share as much as I can with those losing hope and falling into despair with their crippling pain and emotional challenges.  Hope is not always about what we hang onto.  Hope is also what we give.  I'm here to testify that it's possible to survive 20 years of crippling pain and illness and come out on the other side with a good attitude, no addictions, and the ability to keep rising to challenge after challenge without sliding back into despair.  I've been through the addictions and despair.  I am still here.  I made it to the other side of that long awful tunnel.  The rest of my life is going to be spent helping as many people as I can get through hard stuff in the long dark hours of the night.  If I can't get out of my house and 'enjoy my life', I can at least have fun on the internet and make fun things to do.  That is important to me.  Do what feels important to you.  Don't worry about the life you think you're being cheated out of because of your illness.  Maybe your life IS this, and maybe this is what's going to bring out the shining star in your soul.  Be ok with who you are, and the whole world changes for you.

   

  And seriously, take as good of care of yourself as an athlete would of his or her own body.  That's important, too.

   

  • 11:54 am
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