The Revolution... or Some Crap Like That

    For the last week, an online group I've been a part of for several years has been advertising that one of the site's creators was going to be on the new ABC show "The Revolution"  talking about what it's like to live with Lupus and other chronic pain and chronic illnesses.  I admit that when the first commercials for the show came out last year, I was intrigued by the concept--FINALLY a show that helps others by learning to love themselves and how even the smallest of changes can have a big impact without having to do the extreme dieting, wanting to look like and live like the genetic freaks that are supermodels or the constant dieting, under the knife Hollywood actresses society feels we should be like.  I was wrong.  Before the show was even half over, I turned it off.  Yep, it was another one of those shows.  I tuned in today to see the interview with Christine and Toni Braxton about Lupus and cringed while watching the short segment about living with chronic pain.  It seemed that fashion and how to achieve, through strenuous exercise and expensive hair cuts, could make us look like Hollywood stars took up most of the show.  The chronic pain part was nothing more than a 5 minute blurb about how 1 in 5 people suffer from it, take a few pills, how to talk to your doctor, exercise, etc., and we'd be just fine.  Not to mention expensive massage therapy and acupuncture treatments (which most insurance companies do NOT cover).  Then it was Christine's turn.  Again, it was pretty much toned down as if Lupus isn't anything at all.  No mention of the hundreds of other autoimmune disorders, no mention that while some people when given the right treatments, can live semi-normal lives, but for others, even taking care of normal every day tasks can be challenging.  There was nothing about how one gets diagnosed other than to say that most doctors have no idea how to ask the right questions, what tests to do, and the hell that comes along with getting a diagnosis.  There was also no real information about Lupus (or any other disease) itself, except to say that yes, it is a recognized autoimmune disease that can take years for a diagnosis.  It was an hour of my life I'll never get back. 
       Essentially, all it did was put another face to Lupus, but it also bolstered the ignorant way of thinking--that we don't look sick, yes most of us by now have a diagnosis, but look at them on TV--they seem to be doing just fine.  And the truth is for most of us, we're not.  Even with diagnoses, it's a daily struggle.  Revolution?  No.  Just another idiotic television program telling us how we should be living our lives, what we should look like, but nothing truly informative.  Where's the change in that?

A Work in Progress

      Last week I went to a new specialists.  I have yet to form an opinion on him yet.  He listened to me when in the office, drew 14 vials of blood for a myriad of tests (most are more comprehensive panels of what's truly going on in my body), performed a brief physical, and wrote me out 2 prescriptions.  The first is essentially an antiviral/anti-inflammatory medication that is commonly used as an autoimmune medication that involves swelling, pain, and damage to joints that are commonly found in diseases such as Lupus and Rheumatoid Arthritis just to name two.  I won't know if it is working for about another 3-5 weeks, but it gives me a bit of hope.  Even if my labs test negative for the few diseases he ordered, hopefully the panel results will give him and my other doctors a general direction where to look.  I just hate dealing with the "hurry up and wait" part that goes along with most things.  The second medication, however, is in theory temporary.  It's a newer, powerful narcotic.   Except it doesn't contain acetaminophen or ibuprofen in it.  Both medications I have to take twice a day, but while the first builds up in my system, the pain medication provides relief until either the first medication starts to work, or if something is found in my lab results.
         For the first time in I can't remember how long, I spend 10-11 hours almost totally pain free after the first dose, followed by another 10-11 hours of being pain free after the second dose is taken.  There is, however, one serious downside--I can barely function on it.  I'm slowly adjusting to the dose after 4 full days, so I do have the occasion that not only am I pain free, but I can start getting things finished.  It's almost a catch-22.  Either I'm stuck in bed in pain nothing will touch and unable to do even the most basic of chores (although most of the time I'm at least able to read), or I'm stuck in bed because of the side effects of the pain medicine.  I just have to keep reminding myself to do what I can, when I can, and that this is only a temporary solution for whatever the problem is.  That's not to say that when I stop taking the pain medication I will be back to where I started--in too much pain to be of any use.  It's probable my doctor will refill the medication for such times.  It gives me something else in my arsenal to help "survive" a bad flare. 
     I'm still hopeful that someone finds real answers soon so that I can go back to working on my life instead of living it around medication and doctor's appointments.  I've gone through an incredible amount of upheaval in the past year or so, so I'm praying that I am able to maintain the strength I possessed to get through those rough times to get through this.  So for now, all I can do is pray for strength and patience. 

Waiting for the Flowers

     The day is finally almost over.  I fell asleep early last night (around 930, just in time to miss Psych again), but woke up at 330am to a panic attack.  Today I had my appointment with the new doctor and had NO idea what to expect.  He specializes in Chronic Lyme Disease and other autoimmune disorders and is one of the best in the state, so I was terrified, hopeful, and just about every emotion in between.  It pretty much came down to if anyone was going to find answers, it would be him, if not, he'd know where I should go to find them.  At the very least, he'd know in what direction (or directions) to start looking instead of "it's just fibromyalgia--here, take this pill" or "it's just from the Lyme Disease, but the antibiotics won't work so just wait it out."  And of course today is a higher pain day, causing my fingers to curl, my neck and shoulders ache, my lower back still hurts, but my hips ache more so it's hard to get comfortable, and every other joint just plain aches.  Except it's not a kill me now kind of ache, but more like a yeah, it kinda hurts, but I can deal with it kind of ache.
       I finally get to the dr's office (glad I used my GPS instead of my father's directions, or I'd probably still be out driving around) and realize that I don't know what to say as to why I'm there, other than I'm unhappy with my rheumatologist, my neurologist admitted he was out of his league and referred me to him.  It sounded much better in my head than when it came out of my mouth.  At least he has a sense of humor.  He did a basic physical, medical history, and gave me 2 new prescriptions.  Except I don't know what they are.  I have to keep looking at the paperwork from the pharmacy to remember the name of the one that IS covered by my insurance because as he's explaining what they are and what they do, the nurse was in the room laying out empty vials for blood tests.  After she sat the 14th (and thankfully the last) one out, I kept thinking that most of those vials must be for other patients....no one gets that much blood drawn at once, right?  Turns out they do.  And I don't even know half of what he's testing for!  All I understood as he's rattling off abbreviations and such are CBC, Diff, B1, B12, Folate, D, several different Lyme panels, a few thyroid tests, babecia (another tick born bacterial infection), and rocky mountain spotted fever.  I thought only dogs got the last one.  Then again, I also thought only dogs got Parvo, too.  Turns out I had Parvo (called Fifth's Disease in humans) and yes, humans can also get RMSF.  I seriously hope that that test comes back negative, or I'm just going to start seeing a vet from now on. At least it's cheaper.
      And I'm sick.  Again.  Still.  I don't know.  I'm running a fever (again, still, I don't know, it's been going on since late December), my glands are still swollen, and my body still isn't fighting it off.  He told me to rest until the fever breaks at the very least.  I feel like all I've been doing is resting.  And stressing.  And resting.  Add allergies to that and I'm just a mess.  But at least a mess who is on the right path to getting real answers.  He copied my labs from the last 2 years, wrote down my "team" of doctors and their phone numbers, ordered his own tests to start with, and wants me back in 6 weeks.  It's definitely a start. 
      After taking a brief prescription history, one of the medications he prescribed to me is commonly used for pain associated with autoimmune disorders (FINALLY!!! A doctor with a brain!) and some different kind of pain medication (which he now has to fight my insurance company to get covered because it's not cheap and not available in generic form).  I did have to laugh at the plaquenil though.  Other than used as a treatment for RA, SLE, and other similar painful autoimmune disorders, it's primary use is malaria prevention.  Because there's such a huge problem up here with malaria, right?  Granted, the mosquitos can get pretty wicked as the weather warms up, but I'm more concerned about things like bees, ticks, and spiders *shudders*.  But what the hell, it's worth a try.  The main downside is that it takes 4-6 weeks before it starts to work, if it's going to work.  Upside?  The biggest side effect is loss of appetite (good bye stress eating!).  So now I'm back to the hurry up and wait stage.  Wait for the lab results, wait to see if my insurance will cover the pain medication (that I have no clue the name of it, other than it starts with an "N"), and wait to see if the plaquenil works.   And right now, that's fine with me because for the first time in years a doctor is listening to me and is as determined as I am to find out what the hell is going on.  I'll take that over complacency, ignorance, and wasted days suffering for no good reason. 

Growing

      I spent years crying "why me?" when I saw what I knew to be my life slipping away.  Slowly, it started to change to acceptance and the desire to help others who are going through similar situations.  For the most part, that "why me" is gone almost entirely, but every once in awhile it kinda sneaks up on me.  Depression is just another facet of my health.  If you wake up every day feeling like crap and unsure what the day is going to bring, it's hard not to be depressed.  Nevermind the whole biochemical reaction involved with living in chronic pain and mood.
      Today I wanted to start cleaning up the top of the yard by the street and work my way back.  Unfortunately, it was foggy, rainy, and miserable out.  Raking leaves isn't too easy in the first place let alone trying to rake sopping wet leaves.  So I didn't do much of anything except take pain medication, stretch, and dye my hair back to its normal dark red.  I'm not quite sure how it came out yet, since it's still wet.  A few months ago I attempted to dye it black and it came out a very dark, reddish brown (you could only really see the red when I'm out in the sun).  Now it looks black... go figure. I'll find out in the morning how it turned out since I avoid hair dryers and the like.
           But getting back to my point, I've recently met some amazing people online who are going through similar situations.  They keep a positive attitude (most of the time, like anyone, we all have our bad days) and are not only inspiring, but made me realize that what I am doing is right--trying to get the word out about autoimmune and chronic pain disorders.  And no matter what the next few months reveal, I have that hope and that knowledge to hang on to.

Gardening... Postponed.

       It's such a beautiful day outside.  Warm, sunny, very few insects (a serious bonus)... in short, the perfect weather to start gardening this year.  Or at least prepare everything for when winter finally leaves.  And I'm stuck inside in pain and frustrated.  It's no secret that my life has been very stressful the last few years, with my health declining, my mother having to start dialysis, and some serious family problems.  Not to mention getting out of a 3 and a half year bad relationship. 
      While sitting on the front porch last spring looking around the yard (that hadn't been touched except to mow in almost a decade), I began to think about fixing it up slowly.  Slowly being the key word--at least at the time.  So a few days later, I grabbed my headphones and iPod, a decent pair of sneakers and set to work on cleaning it all up.  While I found it physically challenging on many levels, I found it psychologically refreshing.  I was not just doing boring yard work; I was slowly seeing what looked like something out of a trailer park into something beautiful again... and it was with my own 2 hands.  I found it easy to just lose myself in the music while keeping my hands busy.  Within a few weeks, though, my neighbor's dogs destroyed part of my garden while jumping into the yard, looking for my late pit bull, my father and his friends had trampled, broken, and ruined edging I carefully put up, bushes I had trimmed, grass I had planted, and a few flowers, while my newly adopted rescue puppy busied herself with digging ginormous holes in an area that I'm still trying to figure out how to keep from eroding, since rebuilding a wall torn down 15 years ago is impractical, biting the heads off my tulips, digging up other plants, and adding to the destruction. 
     This year I'm a bit hesitant to even begin again because of the frustration I dealt with last year.  It doesn't stop me from having some great ideas and the urge to do it.  One of the biggest projects I'd like to do is the creation of my own little refuge out back.  I live in my parents basement.  Partly because it's almost impossible to financially support myself with medical bills, car repair, rent, phone, etc., partly because I am still determined to finish my college education, and partly to help my mother out around the house.  In my office is a set of sliding glass doors that open to the backyard.  There's a small spot just outside that would be perfect for a garden.  It's naturally edged by exposed mountains and surrounded by a stone wall.  Just off of this perfect place is a small deck that was built when we had a hot tub, which is located under the back deck.  It's just that perfect little spot that on days like this when I feel like crap, I can escape outside in a comfortable chair, smell the flowers, relax, and read. 
     Except for one major road block.  For years, that small deck has been a place for bulk trash.  Old machines that no longer work, broken toys, a mattress set that should have been taken when I bought my new mattress, and Lord only knows what else.  My father had made arrangements with someone who agreed to take the scrap heap (or trash heap, whatever you choose to call it) away LAST YEAR!  Nothing has been moved.  So I can't even plant my garden because walking through it is the only way to get rid of that crap.  Looks like I can add renting a dumpster and bribing friends with food to get it out of there.  My mother and I did plan to clean out the attic this spring anyway, so it's not like it's not on the "to do list" anyway.  Like with most everything else, I'll find a way to figure out how to make it happen.  For now, it's about finding answers and trying to keep from being frustrated.

A Little Off the Beaten Path

       So instead of the usual living, coping, cursing out stupid doctors and ignorant people, I just can't pass up what I went through today.  Thousands of men and women, more than that over the past few centuries, have fought for our freedom.  Yet we're sitting by letting these soldiers die for nothing because most people not only elect, but choose not to fight for all of the rights that are being taken away from us by our government.  Our freedom of religion, freedom of expression, press, all of it is slowly being taken away.  But this is a bit more personal.  As a woman, we are being attacked.  Again.  Instead of moving forward, we're moving backward. 
       For centuries, we were a step above slaves, if even that.  We weren't allowed to learn because it was thought that we weren't smart enough or healthy enough to gain an even basic level of education.  Our jobs were to obey our husbands, raise their children, and take care of the house.  Step out of line and get smacked around and that was okay.  Don't want to perform our "wifely duties?" Well, that was okay too... the husband simply took what he wanted from us anyway.  Finally, in 1920, we were allowed to vote (something most men still thought we were too stupid to do, but the impacts of the women's sufferage movement forced their hands.)  Even if it was only to keep us quiet.  Then during WWII while the men went off to fight, someone had to fill in the vacant jobs left behind.  And you guessed it--women did the work.  In most cases the SAME work the men did.  Yet when the war was over and our soldiers came home, we were just expected to return to the house.  Yeah... because that worked well.  Skip ahead another few years to 1973... the famous Roe v Wade decision that made abortion legal and gave women rights over their own reproductive health. 
        If a woman is strong, hard working, and unafraid to stand up for herself, she's a bitch.  If a man was the same way, he becomes the poster boy for success.  I'll leave my opinion of that bs to myself, but I'm sure it's pretty easy to figure out. 
        And once again, our reproductive rights are under attack.  It's no secret that I've used planned parenthood for well over a decade.  And it has nothing to do with my sex life, nothing to do with abortion, but like many women, it was for health reasons.  Why I chose it? Well, I was 17 and could go by myself.  While my mother knew about my decision and it was covered under my father's health care plan, it saved the awkward talk with my father about the whole birth control/period thing.  (Like most fathers, he prefers to be left in the dark and pretend that his daughter isn't old enough to have a period and possibly a child).  It also would have been a bit awkward to have my mother with me.  Talking is one thing, but being there through the whole examination process, pills, etc. is another story. So, I made the appointment, paid the deductible myself, and continued on with life.  Too many people are under the assumption that Planned Parenthood is a free clinic that mostly provides abortions on the government's dime.  It couldn't be farther from the truth.  While yes, many PP do provide abortion, it accounts for 2-3% of all services rendered.  And it's far from free, whether it be for an abortion, an annual exam, or birth control.  But yes, the government used to fund in part each clinic.  In part.  The costs for their services are based on a number of factors--age, insurance, and income are just 3.  And it's not and never has been free.  When I was employed on my own, with my own insurance, I had to pay my deductible.  When my body decided it hated me and I could no longer work, what I pay for my exams and birth control are based on my income.  To find another doctor and get my birth control (not covered by my current insurance) costs 5x more at least per year. 
     I was due for my quarterly weight/bp and injection this week.  I was far from prepared to see and go through what happened.  Their office hours have been slashed by more than half, most of their staff is gone, and you have to go through a security process just to enter the office now.  They're underfunded, overwhelmed, and now have to deal with extra security measures on top of it.  Shock is one way to put how I felt, before I got angry.  As I left the office, some elderly man walking up the street saw me and exercised his 1st Amendment right.  Big surprise... I was called a slut.  After a few exchanges, I threw an apple at him I had in my purse.  But it was still pretty upsetting.  Apparently, using birth control for a medical reason (and right now, one less medical problem I have to deal with) makes me a slut.  And a whore.  Riiiggghhhhhtttt. 
       While our government (mostly men) are attacking women's reproductive rights and trying to shut down clinics that give us access to affordable care, there isn't a word to stop men from being allowed to go to a doctor, ask for a vasectomy (preventing them from becoming fathers) and get one.  If they can't get an erection?  There's prescription for that, too!  Several, in fact.  And yet, insurance (including Medicare) covers all of it.  Now where the hell is the fairness in that?  And what's next?  Are they going to repeal our right to vote? 
      I've always been a fighter.  I've been through more than a lot of people have and come out on top.  I've worked in a very male dominated world, ten times as hard just to get the slightest bit of respect, and won.  And there is no way in hell some stuffed shirt, overweight, MALE politician is going to take away my basic human rights.  And if any of the very few female politicians stand back and allow this to happen should be exactly where their male counterparts want them--barefoot, pregnant, and in the kitchen until enough of them grow a set and stand up for this injustice.

The Forest Through The Trees

      Sometimes it's hard to see the big picture when so much is going on.  Especially when most of it feels like my entire world is being pulled under me....again.  But a few hours ago, a friend of mine posted a line from one of my favourite poems ever, "The Raven" by Edgar Allen Poe.  Naturally, this started a small discussion involving quotes and the symbolism in the poem.  Then just like that, I realized my best friend of over 20 years was not only right, I achieved the goals she set up for me.
      About 10 years ago, I was a selfish, self absorbed, self pitying asshole.  I fully admit it.  I hung out with people who were bad influences because as quickly as I was making friends, I was losing them because of my illness.  Only 3 are actually still around from that time--an awesome woman I am still friends with, my "sister" from the midwest, and A--, my best friend and "sister" of over 20 years.  No matter what was going on, she was always there; she was there on the phone or in person regardless of what was going on in her life, but I wasn't for her.  A final selfish act of mine led to a split in our friendship for months and it killed both of us, but she was right--I was being a selfish ass, I was dead in the wrong, and we (especially her) needed to stay away from each other until emotions cooled and we decided whether our friendship was worth it.  She's the kind of friend and woman in my life we can go months without talking because time slips away, but we pick up exactly where we left off after a quick catch up conversation.  Even if we are living crazy, hectic lives, we seem to think about each other at the same time and either she or me will send a quick text just to say hello and to let each other know we were thinking about each other.  My mother has a friend like that, except they're working on over 40 years now. 
        It wasn't until my ex sister in law was pregnant with my nephew did I break the silence.  She had been such a big part of my life, my family's life, to not let her know that "we" were going to be aunts.  A few weeks later my parents held their annual picnic and she came over.  We knew we had to sit down and talk, but put it off until everyone but my mom's best friend (whom A-- and I call aunt) had gone home.  Then it was time to sit down and talk things out.  I knew I had hurt her, I knew I was in the wrong, and I knew there was no excuse.  With my mom and aunt's help, we talked through our problems and that was when the real lecturing started.  I was selfish.  I was self pitying.  I was surrounding myself with people who were only going to keep me at their low level and I was better than that and knew it.  But I was still dealing with the fallout of a diagnosis of Fibromyalgia and was too self pitying to truly listen.  It was that night that A-- told me she knows I'm sick, she knows I'm strong enough to get through it... that that horrible person I had become wasn't me, but I had to wake up and do something.  She wanted to see me do amazing things despite my illness, be famous, make something out of myself, to prove to myself that I wasn't worthless and I could do a lot of good for a lot of people. 
     I may or may not still have Fibromyalgia.  I'm not sure if it ever completely goes away, or just goes into remission.  Now I'm up against some unnamed illness that is taking my life away, but I did what she wanted of me.  She had faith in me, even then, that I could do amazing things if I put my mind to it.  She supported me, stood behind me, encouraged me, and most of all believed in me.  I may not be famous (yet, if ever), but I did exactly what she wanted to see me do.  And I just realized tonight that I did.  I had Fibromyalgia.  I stopped talking to anyone who was a negative influence in my life, stopped hanging out with people who only wanted me around to make themselves feel better, and I started taking steps towards my own personal goals.  I graduated with not one, but TWO Associates degrees in 2 years, never failed to make Dean's List the entire two years, I became an active member and president of not only a campus club, but a member and president of a National Honor Society's local chapter.  I received multiple awards from the school for my work.  And I did it all while trying to control and fight through my illness.  And that gives me hope.  I don't think she'll read this as she's hardly ever online, but I have a "girls day/night out" soon and I'm going to tell her and thank her for being such an amazing friend to me.  And I can't wait to hear the inevitable "I told you so."  After all, what are real friends for?  While I have never forgotten our discussion that night (for a lot of reasons that aren't relevant here), I always kept her faith, her goals, and her support in my mind and heart.  I felt like I had failed not only myself, but failed her.  I wasn't looking at the big picture, just a few words of it.  Now seeing the big picture, I'm not only thankful for someone like her in my life, I'm hopeful that as soon as I find out what is making me this sick and find a treatment that works as to continue my own personal goals, I did exactly what she wanted--what I wanted.  And nothing will ever take that away from me.  I can handle whatever comes next having realized I've already overcome the odds at just about everything I've set out to do.  And I have A-- especially to thank for that.