Got Valium?

     It's not like my life has been anything close to normal lately, but since Thursday afternoon, it seems everything has gone completely haywire at a time I need it to calm down.  I'm trying to figure out what exactly my diagnosis of MCTD is, what it means for me, and how it's going to affect my life.  It's also on hold until more lab test results come back to let me know which treatment I start--which hopefully will also be the first and only treatment I'm on because it will work without a million God awful side effects.  Or at least work the way it's supposed to (whatever that's supposed to mean.. See my point about the needing calm?)  My anxiety is probably about a 20 right now and while one person very close to me had a nasty reaction (I found out they were just having a bad day, they were relieved and scared for me and the response came across the wrong way and now everything is okay), my mother thinks I'm obsessing (which I kind of am because I'm not finding very much info on MCTD and what I am tells me almost nothing, and what I am finding is all very negative and extremely vague--re: "we just don't know besides it's definitely an autoimmune disease based on solid empirical data."  And I'm an accidental health awareness activist, so that's what I do, so how effective can I be if I don't know a damn thing about the disease I have besides what it's called?  Nevermind the pages of warning labels that come with the treatments... which include the high level of cancer rates.  Yep.  CANCER!  Including Lymphoma.  Seriously.  I was just tested for that.  Now I'm going to be put on medication that can cause the very disease I was suspected of having and I'm not allowed to worry about?  Not to mention, well, this is my life.  And I have a disease that no one really knows much about, or what the hell these treatments are going to do, whether or not my pain is going to improve, my mobility is going to improve, but the one thing they DO know is the treatment is going to slow the progression of this "orphan" disease.  So yes, I am obsessing a bit.  Because it's safe to assume that life as I know it is over.  And I have to figure out how to start over again.  And take things a day at a time.  And I'm 32.  At that age, it's scary.  There's a lot of unanswered questions that go with that and a lot of questions, too. 
    So yeah, things need to be a bit calm.  Except they're not.  My car, Blue, is throwing tantrums and pitching fits.  My mom got a newer car not too long ago.  It's a piece of crap in my opinion and I'm fairly certain the previous owner was a female.. or a male who purposely went out of his way to dent every single panel (including the roof) of the car and succeeded.  Including the sideview mirrors. But my guess is just a horrible female driver (the Slutgers parking stickers are a clue).  And it couldn't get out of it's way if it tried, it's so slow.  But Blue seems intimidated by the new car and I had to make her feel better and made sure that she wasn't being replaced, it was mom's, and the only time I would drive the new POS was if Blue was in the shop for more than a day for repairs.  Then promised Blue a car wash and some overdue maintenance.  That's when things kinda went sour.  On the way home, the trans went into "limp mode"  stuck into 3rd gear on a major highway.  And the ABS and traction control lights went on.  Of course the garage I pulled into didn't have the program to scan the OBD system (Seems German cars need special computer programs..)  The trans fixed itself, and I was able to manually shift her home (LOVE that Tiptronic trans!), but I still don't have ABS or traction control...So I found an OBD scanner and came up with a solenoid code that might go away.  Start simple, right?  Check the fuses... the 2 might run on the same circuit. EXCEPT THE LABEL IS IN GERMAN!!!! Now I'm just irritated and waging war against the damn car.. the maintenance can wait and it'll get washed in the rain.  And Germany?  They can go pound salt.  They build a car for Americans and label shit in German.  The jack? It's in 4 parts, the instructions are also in German with no pictures.  (Found that out when I got a flat tire last year.. put it together and prayed I didn't die.)
    And then there's Darwin.. my hamster.  She's my new roommate until the heatwave breaks.  I cleaned her cage out and gave her extra treats, since she hates it when I clean her cage and toss her food stashes.  I'm on the phone last night, talking to an old friend and watching her running full speed in her wheel until she purposely lets herself go, flinging herself backwards into a carefully placed pile of fluff.  Quite ingenious, actually.. the way a kid would throw herself into a ball pit or something.  (And amusing to watch)  Occasionally, she would mistime the jump and slam into the side of the cage, but she's a resilient little rodent.. I've seen her survive harder falls before.  After 2 hours of this, she went over to the water bottle for a bit, the food dish, her treat dish, make her way to the top of her cage, and just flop over on her side, eyes closed, not moving.  I called her name a few times.  Nothing.  I put the phone down, opened the cage, poked her.  Nothing.  My hamster just dropped dead.  Just like that.  I picked the phone back up, not sure what to do.  She's about 17 months old, I have no idea how old they live, but she was just playing. Was it heat stroke?  Did she hurt herself on the cage? What do I do?  I've never seen a pet drop dead like that.. My friend is trying to keep me calm when all of a sudden she gets back up and runs back down to her wheel and begins the process again.  I fell asleep after watching her repeat this process for 4 hours.  What the hell kind of hamster did I adopt?  She's playing dead, my dog spends most of the day hiding in the closet, my car is throwing temper tantrums... Oh, and I have a 600lb bear stalking me.  I couldn't make this up if I tried...Screw the Xanax... I need Valium.

Finally.. A Diagnosis.

     I had no clue what to expect when I walked into the rheumatologist's today, except she was going to try to add another medication to the list.  I was prepared to fight her on the point because I refused to take any more medication until I knew why I was taking it.  "Because I said so.  Because I'm the doctor." are not valid enough reasons. I want a diagnosis before I start anything else.  Well,  I got a 2 for 1 special today.  And then some.   She started by bringing up my history with steroids, and how I'm responding (kind of) to an anti-rheumatic medication.  I say kind of, because while it's working, it's not strong enough to bring down the severe inflammation and the pain.  She broaches the subject of complementary medications.  I abruptly stop her and explain that I understand her logic and how I want to feel better, but I do not want to start anything until I know what I'm being treated for, etc.  She briefly explains that she knows what she's treating me for--kind of.  "I'm not talking about treating me for an autoimmune disorder.  I want to know which one.  I want a name for this hell."  And that's when everything started feeling weird.
     I do have an autoimmune disorder.  A rather rare one.  An "orphan" one in fact.  It kind of doesn't have a name, but a diagnostic code.  It's lumped in under Mixed Connective Tissue Disorder.  And it's treated with either oral steroids (which I don't tolerate, so she won't even try) or immunosuppressant medications.  You know, the kind they give to patients after organ transplants?  Yeah.  That stuff.  I'm trying to pay attention to what she's telling me, but I find myself staring out her office window, mind racing, doing everything I can to hold it together.  I was prepared for just about every scenario but this one.  What the hell?  Then I realize she's staring at me waiting for me to ask questions about what she said.  I know she mentioned something about how some autoimmune diseases exist, but are so rare, that they don't have names.  The symptoms are clearly there, laboratory tests show that something is going on, physical exams clearly show something isn't right (fevers, swollen joints, swollen lymph nodes, etc.) that last for months to years, but diagnostic tests are inconclusive on all levels, except to show that an autoimmune disease exists, but not what it is.  In my case, I have 15 years of labs and other tests, but there aren't any other tests to run.  So what now?  Will this medication help me get better?  Will I get my life back?  What are the side effects? I have to have a few more blood tests to see which medication is the best fit for me.
     It will take a few months for the medication to start working, then hopefully I'll be able to start some kind of physical therapy program to prevent further joint damage and muscle atrophy.  But there are a million and one what ifs.  The pain I'm in now may ease some, or may never ease at all.  There's no way to tell if it's from dealing with excessive inflammation for so long, or if it's the result of damage and if that damage is permanent.  And, like every other autoimmune disease, there is no cure.  I was prepared for that one.  But what I wasn't prepared for was some rare, orphan disease that very little is known about that was caught 15 years later.  And I have to absorb all of this until I get the test results back and find out which medication I start.  Then I start fighting this barely known orphan.  By no means am I pessimistic, but I am realistic.  Progress will be slow at times, but there will be progress.  There isn't much research out there about this, none of it positive, most of it is about as vague as it gets, so I'm going into this about as blind as you can going into a fight, but it could be a lot worse.  This orphan disease can throw all it wants at me, slam me down to the ground all it wants, but I'll just keep getting back up.  Some times might take longer than others, but I'll get back up.  I do, however, have one warning:  if you're not going to stand behind me, walk away now; I will take you out along the way.

Taking Things for Granted

     It's amazing all the simple things in life most of us take for granted.  At least until we find that either it is difficult to do so, or impossible to do them.  For many of us, we wake up in the morning, smack the snooze button as many times as we can until either we don't have enough time left to before we're going to be late for work or class, or we find ourselves tripping over our feet in a mad dash to the bathroom because our bladders are about to explode.  Then we have our coffee, take a quick shower, get dressed, and begin the rest of our day.   (For the motivated of us, time at the gym is squeezed in before breakfast as well).  It's not something to give a second thought to.. well, unless it's one of those Murphy Monday kind of days.. the alarm doesn't go off, you oversleep, spill coffee on yourself, run out of hot water, have car trouble.. stuff like that.  That is, until you find you can't do that anymore.
    After I was diagnosed with Fibromyalgia, it took me several years to accept it.  Medications weren't working.  Diet changes didn't work.  Physical therapy and several forms of exercise didn't help.  I was exhausted.  I was in pain.  Yoga helped ease some of the pain, but it didn't do a lot.  My sleeping habits sucked--mostly because I would sleep 8-10 hours (sometimes more, sometimes less) and still wake up exhausted.  Several sleep studies revealed that I would wake up several dozen times a night.  I'm not talking about 2 to 3 dozen times.  It was closer to 5 or 6, some studies showed as many as 8 or 9 dozen times.  I wouldn't fully wake up--meaning I would know I was awake, but my EEGs would show I would wake up to Stage 1 sleep--the point that you first begin to doze off.  My neurologist--the one who ordered the studies-- agreed with the findings that it's caused by pain and possibly muscle spasms. Then I found out I don't have Fibro (explains why the medications didn't work). 
     As much as the experience of being blown off as a hypochondriac then being misdiagnosed for a decade (technically longer, but my symptoms were relatively easy to ignore/hide while I lived my life) sucked, what sucked even more was just how many opportunities I passed up and how many things I took for granted.  Like remodeling my room or office.  Trips I put off taking.  De-cluttering things for donation (and giving everyone in this house a fighting chance of finding stuff).  Going out with friends more.  Too many things to mention.  I don't regret many things in life.  Regret tends to be as poisonous as hatred, grudges, and other negative feelings.  You can't go back and change the past, but you can learn from it.  And I wouldn't be the person I am today if it wasn't for the life I have lived--both the good and the bad.  After all, we grow as people when we make it through the tough times and learn to appreciate the better times more. 
     Now it takes me no less than an hour to get out of bed every morning.  My joints ache that bad and become that stiff that I have to go through a "checklist" of sorts every day.  It's become more of an obsessive compulsive exercise ritual--just to be able to get out of bed.  This isn't something I do because I want or choose to.  It's because I have to.  And there isn't a day that I don't have to.  I have to slowly get my joints moving and loosen up. I slowly move my fingers and toes, roll my wrists, ankles, neck, arms, move my knees, hips, back, elbows, shoulders.. everything.  Then I sit up and repeat the process until my joints feel loose enough to get out of bed.  Then begins the slow process of starting my morning--washing up, coffee.. all while moving slowly, trying to stretch to force my body to loosen up and get moving.  On days that I have to pick my mother up, doctor's appointments, or know I have errands to take care of, my pain medication isn't an option.  I never thought that something like just getting out of bed would be such a difficult task.  Or other simple things most of us don't think twice about. 
       There are days that the tiniest tasks seem to be too daunting and difficult.  I never thought I would see the day that something like having a cup of coffee would be hard.  First, the joints in my hands were so swollen, trying to hold a coffee mug full of coffee was a challenge.  Think about it--your fingers are too swollen to grasp the handle properly.  And because of the swelling, holding the mug with two hands is also difficult because with the swelling comes overall weakness in your hands.  A straw might work, but straws are made of plastic and coffee is hot.  So it takes time, patience, and perseverance.  Not to mention a tolerance for room temperature coffee, considering how long it takes to drink it with swollen, aching, weakened hands. 
     Other examples?  Brushing teeth and hair.  Same problem.  Even as the swelling goes down.  Except I have an electronic tooth brush, so the vibration also makes my fingers go numb.  But I'm not about ready to lose my teeth.  My hair?  It rarely sees a brush--I mostly use my hands because my hair is very long, extremely curly, and unruly is an understatement on a good day.  A brush would just turn it into a frizzy mess.  Finger combing seems to work the best.  In combination with good leave-in conditioners.  Which also requires taking a shower.  Which at times is enough to leave me in bed the rest of the day.  The energy it takes, the pain it causes, things most people don't think twice about.  Taking my clothes off, as easy as it sounds makes me feel like I should be a contortionist because my joints are in too much pain (stepping out of pants or shorts, underwear, pulling a shirt over my head.. unclasping my bra.. things no one ever gives a second thought to unless they're in a situation and their mobility is restricted), stepping over the edge of the bathtub, getting the caps off the shampoo, conditioner, and body wash bottles.. using towels to dry off, getting dressed again..
    These are just a few examples of what many people don't think twice about doing every day because it's part of a daily routine.  Things no one would think would be difficult unless something happens and they have to adjust and adapt for short periods of time (injury, surgery, bad luck..), but quickly forgotten when life returns to normal. Because they're just taken for granted.  This post was not--and is not--intended to be a pity party or anything of the sort at all.  It is simply the truth.  I am but one person who deals with this struggle.  Some days are better than others.  I'm able to have my coffee with no problems, or shower and dress without agony.  The routine of getting out of bed remains the same--some days it doesn't take as long, other days, much longer.  But I am also not the only one who is going through the same thing.  For some, it's even more difficult. I have learned that on those days when the little things aren't as hard to not take those things for granted, but to relish in the ability to do them with little to no difficulty. 
     I have also learned to enjoy those rare days that I can actually sit (or lay back) and relax--not because my body is forcing me to--but because I can.  I don't often to that, considering how rare those days are and how many things I have to put aside because I can't physically do them.  When I do have a better day, I pace myself and get a few things done (which is a challenge in and of itself because it's very easy to overdo it and spend days recovering from it).  As much as I regret having wasted so much time over the past decade, in some ways, I also don't.  Between what my life was before this illness (when I was working), when I was misdiagnosed with Fibromyalgia, and this illness's latest flare that has once again drastically changed how I live my life and how I look at life, I have learned that nothing, no matter how small, simple, or "normal" it may seem in life, should be taken for granted.  Because you never know when that tiny, simple, normal, everyday thing you do today might become an incredibly difficult task tomorrow.
    

A Different Kind of Safety Net

     One of the toughest and most painful lessons you learn about having a chronic illness is who your real friends are.  It's one thing when you have a job that requires extensive hours, when you're married and have children to raise, or when you hit hard financial times and don't have the money to go out all the time.  You still manage to keep in touch with your friends though the chaos, find the occasional night off to hang out, date nights with other couples, BBQ's, find a babysitter to go out with friends, or become creative to find inexpensive or free excursions to stay in touch with friends.  But it's totally different with chronic illness, regardless of budgets.  You make plans, but you cancel them at the last minute because you are either far too fatigued, don't feel well enough, or you're in too much pain to hide it from anyone.  Your "friends" know you're sick, but most don't understand because you don't look it.  Unless you have some disfiguring illness, or have something that is more easily understood such as cancer.  (I just mention cancer as an example only because there are so many fundraisers to help fund research and find a cure, almost everyone has known someone who has had it, and it is a very public illness that gains a lot of attention and no decent human being is going to turn their back on a friend or family member with it.)  Except you quickly begin to realize who your true friends are.  Those are the ones who stick around through all the "maybes," the last second cancellations, they're the ones who may not understand how you're feeling or why you don't look sick, but still ask questions to try to understand what you're going through.  And if you have a diagnosis, they ask you about your disease.  Some even go online to learn about it.  But they don't turn their backs.  And they don't leave you, no matter what.
      I've been blessed with a few of these people.  I have two I consider sisters--A-- (an inside joke--she knows who she is), and Gena.  Alie has been around for 23 years, Gena for 13.  Like any best friends, we lose contact for awhile because of life, but when we do reconnect, after a brief catch up, it's like no time has passed.  I have some with whom I am very close with that I also consider family--Terry, Chris, Shawna, Adam, and a few others.  Then there are others I am friends with, some closer than others, but I'm not sure I can imagine my life without--Caitlin, Dan, both Jasons, Helen, Jess, Michael, and too many others to mention.  And I can't forget those who inspire me--my Babci, my grandfathers, grandmother, Cassandra, Burly Man, and a list too long to continue, but I wouldn't be here without them.  But I have to bring up at least two, as they are my rocks--my mother and my Aunt Sharon.  My mother and I have been each others' rocks over the last few years, while my Aunt has been the voice of reason.  She's been almost like a second mom to me growing up.
      When I think about all that I've been through--especially the past few years--I'm not sure if I would have made it without having so many awesome people in my life.  Some I bare everything to, knowing that anything I say will never leave them.  And the same thing goes to anything I'm told.  Others, I don't even have to say a word to.  We just have many common life experiences to tie us together that we become unspoken support systems for each other.  It is through this process, we form a safety net for each other.  These people have become mine.  No matter how bad things might get, no matter how tough they are, or how far I fall, I know I will never reach that bottom again because of them.  And even in the darkest of nights, there are their invisible hands there to help me up without me having to ask.  Because that's what true friends do.  We support each other.  We listen, we help, encourage, cheer on, cheer up, laugh with each other (sometimes at each other), cry with each other.  We're there.  No matter what.  And that's a feeling that no one or nothing can ever replace.  Most people take this for granted the same way they take the simplest of things for granted until it's gone.  My friendships, even though the closest ones are few, are one of many things I have learned to not only not take for granted, but to grateful, appreciative, and to cherish them as much as I cherish those individual lives that make up those friendships.  And just like the rest of my family, I would give anything and everything that I am for anyone of my friends to help them out. 

The Hitchhiker

     Since I've been unable to de-clutter and clean out the house recently, I've been doing what I can to keep from going stir crazy.  I'm more than a bit OCD at times and as my stress rises, my anxiety rises.  As my anxiety rises, my OCD gets worse.  As all three get worse, I find that cleaning helps.  Not just your every day kind of cleaning, but the tear everything apart, re-organize, throw out broken, I've been saying I'll fix that thing, donate stuff I haven't used in forever, but keep finding excuses to hang onto crap, and scrub the rest within an inch of their lives kind of cleaning.  Except I can't really do that.  My joints are too swollen, fatigue is an understatement, and pain is an understatement.  But I do a tiny bit at a time when I can to at least feel like I'm doing something.  Then I realized I can start doing the same thing online.  So I started with my Myspace account.  I can't remember the last time I used it, so I'm downloading pictures, posting some to my Facebook (trips I've taken, events I've attended, cool random pictures..), and ultimately deleting the account when I'm finished.  I'm downloading the pictures because three years ago, my hard drive crashed and I lost everything.  I kept meaning to buy an external hard drive to back everything up, BUT just never got around to it.  First thing I did after I replaced the hard drive?  Bought an external one to back up my files.  I admit it's been kinda cool (and sometimes bittersweet) to go through some older pics.  I found one today that made me burst out laughing.  The time I accidentally picked up a hitchhiker.  But it's not the kind you'd think.
     Before I finally won my disability case, I was on public assistance.  It really doesn't give you much to survive on.  It certainly doesn't provide enough for you to properly maintain your vehicle, let alone repair it properly, even if you're a mechanic who can get parts at cost and either fix it yourself or know those who can fix it (like a parent).  Naturally, I had a car that just loved to fall apart.  I became a master with duct tape, coat hangers, Gorilla glue, jerry-rigging, and I found 101 uses for vice grips (including using them in place of a manual window handle) and fence latches.  Yep.  Fence latches are for more than just screen doors and fences.  My car was THAT bad. 
   Scary thing?  My brother and nephew were back living at home. He was back in school and working full time and my nephew was in daycare.  And I was the one who was responsible for dropping him off at daycare.  In this car:

(aside from the dents that were all caused by family members, the exterior really doesn't look too bad, but beauty is only skin deep, right?)
     My nephew and I had our little ritual.  Every morning we'd stop by a local little stop, so I could buy a cup of coffee for me, a bottle of Nestle Quick for him (depending on his mood depended on whether it was vanilla, chocolate, or strawberry), and the store owner would give him a doughnut.  He'd only pick the sprinkles off and maybe take a bite out of it, but that was our thing.  I'd clean off my back seat about once a month and would throw out about an entire store's worth of stale doughnuts.  I had seat covers, so it didn't matter much to me. I had more important things to worry about than a doughnut and Cheerios mess.  Occasionally if my dog was in the car, I didn't even have to worry about it.  She'd take care of the mess for me.  It was doggie heaven--a car ride AND a ton of food!  Until I picked up a hitchhiker on my way home one day.
    I was about a mile from home one morning when a bear sauntered out in front of me.  I live in the woods, so it's not exactly abnormal.  I slammed on my brakes and waited for him (or her) to move.  His head came up to about the middle of the window and he was definitely taking his time, except he was walking towards my car.  Then he was ON my car.. up the hood, and onto the roof.  Great.  Then I realized:  My driver's side door was held shut with a hook and eye fence latch and I had over a month's worth of doughnuts and buttered rolls on my back seat.  And I panicked.  He may have been a tall bear, but he was a skinny bear.  Not good.  If he was a fat bear, I'd of given the car a bit of gas and let him bounce off the car unharmed.  But a skinny bear?  He'd probably get hurt if he hit the pavement.  And even though a sneeze from him would probably take the door off my car and I'd be lunch, I still didn't want to hurt him.  So I grabbed my cell phone and called the one person I thought could help:  my dad.
    He spent well over a decade working for the state's Fish & Game program, so he'd know how to handle this, or who I should call.  What the hell was I thinking.  By now I was in a dead panic and naturally, after I repeated myself 3 times (he thought I was kidding and I can't say I blame him, I would too) he bursts out laughing (if the roles were reversed, I'd of laughed too).  He said I should just take off and let him roll off my car, he'll be fine.  And even if he did break into my car, bears don't eat humans.  Right.  I really did NOT want to test that theory, even if there was a damn bakery in my back seat.  I hung up from him and tried to figure out what the hell to do as I noticed an oncoming SUV.  Finally some help!  Except not.  The woman actually started cursing at me!  Like I planned this!  If there wasn't a 300lb black bear standing on the roof of my car, I probably would've gotten out and smacked the hell out of her.  As it was, I rolled the window down a bit because by this point, she pulled up next to me and is ranting at me... something about feeding the bears.  Seriously?  Feeding them what?  Me?  Hey lady!  Here's Bobo, my circus bear!  Please feel free to stick your head in his mouth at anytime, jackass!  What the hell am I supposed to do?  I stopped to keep from running him over and THIS?  (I point to my roof) THIS IS WHAT HAPPENED!!  Then she realized I was in trouble.. asked me if I tried my horn or anything.  Well, I would have if the damn thing worked.  And proved it to her.  It let out this pathetic little bleat.  So she blew her horn.  And the bear fell off my roof.  Kind of.  He got stuck on my rear spoiler.  Of course he did!  But I thanked her.  Because at least then I knew if he hit the pavement (or hung on for dear life), he probably wouldn't get hurt that much closer to the ground.  She asked me what was I going to do if he was stuck on my trunk.  I told her I'd call the cops and have him tranquilized.  At least if he was stuck in my spoiler he couldn't rip my car door off.  I finally talked her into leaving me alone.  At least Bobo wasn't stuck and landed on all 4 paws.  I couldn't wait to get a new car.  I did, however make sure that until I did get a new car (with doors that closed without requiring $1.50 flimsy latches), to remove all food just in case Bobo ever tried to hitch a ride again.  I took this a few seconds before he tried to hitch a ride:

Looking at this picture now, I should've seen it coming.  Just look at his face... he was totally up to something.

Bullying and Chronic Illness

   Yes, I've changed my entire layout and format, but I'll get into that in another blog.  Because while I was working on it in a totally different mindset and mood, something else happened and it completely pissed me off.  Bullying.  Playground bullying and classroom bullying is one thing.  Most of us growing up (or still growing up) have either been the victims of it or bullies ourselves.  (I was on the receiving end of it most of my life).  And kids can be cruel.  It's a sad fact of life.  You get bullied or teased because you're too short, too fat, too skinny, too smart, too stupid, too loud, too quiet, you name it, some insecure little jackass can make you a target, well, because you're different.  But to a point, it's normal.  Until lines get crossed.  Then it's time to step in.  Now with all this technology, it's even easier to bully behind a cell phone or a computer screen.  Kids (and adults alike) are braver.  And crueler. 
   I'm connected to several health awareness groups online.  Many of us work together to help those with chronic illnesses, the families, loved ones, and friends of those understand what these illnesses are, and what it's like to live with these chronic illnesses.  And above all, to raise awareness of them.  Many of these illnesses are autoimmune diseases.  While Lupus and Rheumatoid Arthritis receive a lot of attention, dozens, if not hundreds go almost unacknowledged, except for the patients, family members, friends, and doctors who manage these "invisible illnesses." But they're just as real. Just as devastating.  Just as painful.  And in some cases, even worse because less research is done on them, less awareness is spread, and more ignorance of them exists. When my friend asked me to step on board with the project for our page, I admit my ignorance as to just how many of these diseases existed and just how horrible some of them could be.  I knew of a few of them:  Lupus, RA, Chrohn's, Sclerodoma, Sarcoid, Fibromyalgia, Chronic Fatigue Syndrome, MS, MD, and a handful of others.  I had never heard of Juvenile Dermatomyositis, Polymyositis, and countless other diseases.  The ones that hit home?  Are the number of children and teenagers that suffer from these diseases.  And I admit that it makes me feel like a total wuss sometimes when I feel like giving up as I fight to keep it together because I'm over a decade of not working, finding out I was misdiagnosed, mistreated, and still have no clue what's making me sick, yet these amazing kids are dealing with this with grace and strength.  And some are even dying.  Like Mason.  Ten years old.  Of complications of JDM (Juvenile Dermatomyositis). 
      I found out yesterday that one of the pages I follow and work with is that of a 14 year old amazing girl battling (and God bless her, doing well with) JDM and Juvenile Arthritis (Nope, not your grandma's disease--do some research!!) has been bullied online by some scumbag.  Not her personal facebook page, but one she created to raise awareness of her diseases.  No, it's a FAR cry from the why me, pity me, look what this disease does, God isn't fair kind of pages.  It's based in fact, research, it shows how she's doing, the moments that are difficult (her weekly hospitalized infusions), to being able to go to a school dance and actually being able to wear heels!  (To a chronically ill, 14 year old girl, something as normal as that is HUGE!).  But aside from raising awareness of her disease and sharing other stories of kids with JDM, she is extremely positive.  And it's inspiring to so many people.  Including me.  But some scumbag--an adult, no less--has left messages and comments on her page that NO ONE should see.  Including insults, fake cures, and things I will not repeat because the girl's mother has removed them before they were seen as to not upset her.  And as if that was not bad enough, that same scumbag recruited friends and family members after she was reported and blocked!
    Now these are ADULTS bullying and attacking a 14 year old, chronically ill girl online.  Hiding behind computers.  On purpose.  We're not sure if anyone else was the target of such bullying, but we quickly sent messages out to other pages to publicly warn others about them, to make sure that they are quickly reported to Facebook and the proper authorities.  But it still pisses me off.  Why?  Because living with a chronic illness is difficult enough.  Most people don't understand us, or our illnesses.  For most, regardless of how much we try to educate them, they just assume we're lazy, pain killer addicted, government money sucking losers.  Because they're ignorant and have no desire to be any other way.  But to attack and bully a kid?  Blame them for their illness, tell them if they just got out and moved more they'd be fine?  Blame their parents for vaccinating them, or feeding them pesticide laden vegetables?  Would you lay into a cancer patient like that?  Or a kid with cancer?  Or the parents of a kid with cancer?  I didn't think so.  So before you decide to lay into a kid trying to make a difference by dispelling ignorance about his or her disease, or me for doing the same about other diseases while hiding behind a computer screen--go up to the top right corner of your browser, type the name of a few of the diseases into your search engine, and use respectable sites to learn more about them... or actually read some of the links on our pages to learn more before telling us what you think caused our diseases and what we need to do to cure them.  And above all, STAY THE FUCK AWAY FROM OUR KIDS.  Come after the adults, you cowards!!!!

A Lesson In Fighting

     In the 70s, a chemical company located in New Jersey, responsible for the safe disposal of toxic chemical waste was cited for cutting corners, accepting waste it had no permits to accept, and, of course, illegal dumping.  By the late 70s, the owners of the company had been heavily fined, the site was shut down, and the EPA declared the entire lot a Superfund Site--meaning that the federal government would be working along side the county and state government to safely and effectively clean up the site.  (Notice the word "efficient" is left out--there's a reason for that).  Just over 32 years ago--in 1980--with very little work done to the site and the company's owners facing criminal charges, the site exploded.  As one local resident described it "it looked like a rainbow colored mushroom cloud."  While the EPA STILL has not released a full list of what was on site, in my research, the most I could find was a 32 page list of chemicals, ranging from pesticides, benzene, arsenic based chemicals, but they did exclude any radioactive elements.  I knew firefighters at the scene.  I had family in the area.  I lived near there.  I may have been a baby then, but I was hospitalized a few days after the fire.  And I've been sick my whole life.
     My parents decided maybe the suburbs were probably a better choice to live than an urban area like they grew up in.  Less chemicals, less crime, a bit safer... they weren't looking for my brother and I to have the Prozac Pollyanna childhoods, but something that we didn't have to ask why there were green spots on the cars from the refineries, or always having to look over our shoulders, or "what's that smell?" and having to close the windows and guard the house with shotguns after an industrial accident kinda thing, ya know?  Except it didn't quite work out with the house behind us getting robbed, and the crack dealer around the corner, and the drug addict across the street who seemed sweet on mom.. SO we ended up in the middle of nowhere.. with mountains. And trees.  And cows.  And having to drive to get ANYTHING. And darkness.  Real. True. Darkness.  Scary stuff when you're used to hearing traffic at night and things like street lamps.  And I won't even talk about the wildlife adjustment.  City and Suburban squirrels look like hamsters compared to these mutant lardasses up here.  But I'm babbling and digressing..
    It took us awhile to adjust.  Who knew a place like this existed in Jersey?  Of course we moved here when MTV played real music--before the fake ghetto shit was cool and city accents were a sure fire way to get your ass beat in school.  Because here?  You were either some rich city commuting transplant or a farmer's kid.  My brother and I weren't.  We "tawked" funny.  We weren't rich, but we weren't poor, but my parents saw no reason to have the best of everything even if we had the money for it because if what we had worked, why throw it out? 
    There was 1 rule in our family: never take the first swing.  And I never did.  But I damn sure was always the one taking the last one.  And my mom's second job was talking to the school principal.  I could take a lot of verbal abuse after awhile, but my brother was a different story.  He was a grade below me and preferred the "turtle stance" when it came to fighting.  I spent most of my time defending him.
    I even went into a career field where I had to work and fight 10 times harder than anyone else simply because I was female.  I was a mechanic.  And damn good at it.  Still am, even if I can't do it.
    The point is, I grew up fighting.  And to this day I never lost a fight. Ever. Except now I find myself in a different kind of fight.  One of the first lessons I learned when my father taught me how to fight (besides never take the first swing, so be prepared to dodge it), is to know my opponent.  I don't know my opponent.  I know my body.  I know something is very, very wrong and it's fighting itself.  But I don't know what it is.  And the only course of action is to try to remain calm and be patient until that day comes when the opponent is finally revealed.  Which for someone as emotional and impatient as I am, is one of the most difficult things to do.  Except during a fight....especially one as important as this one is.  Then everything is turned off but focus and determination. 

Cleanup in Aisle 1..& A Random WTF Moment in Medicine

     About a week and a half ago, I had to go in for a CT scan of my chest, abdomen and pelvis.  It's not like I haven't had a CT scan done before.  Or an MRI.  Or an ultrasound.  Or an X-ray (or several dozen X-rays).  Or several of the above named tests for one injury, illness or another, except the X-rays.  I'm pretty sure I'm probably up there with Evel Kneivel with the number of those I've had over the years, but at least some of those include pneumonia and bronchitis, so they weren't ALL injuries--just most of them.  Except this CT was different.  Other than looking specifically for signs of sarcoidosis (an autoimmune disease), my rheumatologist was looking for signs of lymphoma.  Yes.  Lymphoma.  That super scary C word.
     After combing through almost 15 years of labs, conducting and accumulating almost 80 pages of labs in less than 5 months, several other exams, physicals, tests, eliminating other diseases, my rheumatologist decided the most likely candidates:  Sarcoidosis or Lymphoma. And, whatever this is, if it's Sarcoid, Lymphoma, or another autoimmune disease, I've had it for at least 15 years, probably longer.  This is, by far, the worst flare I've ever had.  I'm now well into month 7, with no clear end in sight.  I'm still running a low-grade fever, I'm still exhausted, my hair is still falling out (how I'm not bald by this point is a miracle), my joints are still swollen, to say I'm in pain is an understatement--but it's not something that EVER goes away (it does ease sometimes.  I have a small window when my pain medication kicks in if I have to get anything done around the house, so I choose wisely), and my lymph nodes/glands are still swollen enough to feel and are extremely tender/painful to touch.  So much so, that I can't tolerate wearing a bra most days.  Me.  The one who like NEVER goes without one, even when I sleep because it's just that uncomfortable due to the girls' size.  I just deal with the pain when I have to leave the house, since I'm already in pain, can't take my pain meds, so what's a bit more pain, right?  But at least there's some good news.  I'm no longer sleeping 20 hours a day.  And I was put on a new medication 4 months ago and it's sort of working. The swelling/inflammation in my joints is going down (I put my smaller ring on for the first time this year the other night!  Couldn't keep it on, but it's progress), but the joint pain is becoming worse and more acute.  I'm seriously hoping it's temporary and the result of being so swollen for so long.
      So yeah, the next logical step would be the CT scan.  I was explained that if I had Lymphoma, something in my labs would have shown by now indicating it, other than the basic red flags that indicate "something" is going on in my system.  (Re-I have like a 1% chance of having it)But the physical symptoms fit, I have to have the scan done, and it's one more disease she can cross off the list with certainty.  But still.  Cancer? Screw logic, reason, and rationality.  I don't care who the hell you are, you can be Fort Knox, but when someone drops that C bomb in your lap, it rattles you on some level.  And to make life even more fun?  I'm deathly allergic to Iodine, so I couldn't even attempt the heart exploding doses of steroids and rhino tranquilizing doses of Benadryl in the 7-10 days before the scan because the scan is looking for, among other things, inflammation.  And what do steroids do?  Bring down inflammation.  So it would kinda defeat the purpose. 
     I return to the doc next Friday, but I have serious anxiety issues and neurotic, and no chance in hell can I wait 3 weeks for those results.  I was told it would be about a week before she'd get the results.  I gave her a bit more than that and called her Friday.  She received the results first thing that morning, but isn't in on Fridays and would call me today at some point.  Great.  An entire weekend (2 and a half days) then making sure the volume is turned on my phone, I'm never out of service range, and trying to remain calm waiting for her call.  And playing out then endless permutations in my head.  I'm a new patient, so I don't know her office protocol.  Do they reveal test results over the phone?  Do they only reveal good news?  What if it's lymphoma? What if it's sarcoid? What if it's both?  What if it's neither?  What if they found another form of cancer?  Would the tech even look for anything else?  If something looked screwy (like the fact my spine is crooked), would they tell the dr? And so on.
    So I turned my phone off silent last night and of course was up all night.  Picked up my mom and after reminding her about the call I'm expecting, she mentions wanting to stop at the grocery store for "a few things" that we're out of.  Just a few.  Bread, butter, chicken was on sale, she wanted fruit, I needed creamer, and I did bribe the dog Saturday night if she behaved, I'd buy her new treats since her treat cubby was pretty bare.  I didn't want to go for 2 reasons:  I just knew that call was going to come while I was at the store and there's NEVER such a thing as "a few things" when it comes to the grocery store and my mother, especially when we haven't had the chance to go grocery shopping in awhile.  And I was right.  On both counts.
    We weren't in the store 5 minutes when Schroeder's piano started blaring the Charlie Brown song.  My mother and I froze and stared at the phone.  "We have the results of your CT scan..it was negative for lymphoma, the lungs were pretty much clear..." I stood there stunned.  I didn't have cancer.  Or sarcoid.  I had no idea how to react.  I was good news.  But I still don't have a diagnosis, so now what?  What do I say? Can I ask questions?  I'm in a public place.  Shit, I'm not breathing.  What is she saying?  She's still talking..."And you have an ovarian cyst.  You should schedule an appointment with your gyn and have an ultrasound done, we can fax the scans over to them.  Who do you use?"  Wait.  What?  What the fuck is she talking about?  "What? Say that again?"  I was a little bit more panicked than I realized because instantly her nurse repeated the stuff about the cyst again and made it clear it had absolutely nothing to do with my symptoms or my labs.  And I realized my mother was pale as a ghost and grabbing onto a shelf as if it was her lifeline, but I couldn't speak.  I know an ovarian cyst wouldn't wreak havoc on my system like that, nor would it cause anomalies in my labs, unless it was infected or something.  But finding an ovarian cyst when they're supposed to be looking for lymphoma or sarcoid, or going over the 100+ scans to find out what the hell is wrong with me never even crossed my mind.  I just gave my primary doctor's info.  I'm not doing anything about the stupid cyst unless I have cause for concern.  I get them all the time, so I know when to be worried and when not to be. But seriously?  An ovarian cyst. 
      But of course the second I hang up, I tell my mom that I don't have lymphoma, but they still don't know what's wrong with me. And I begin to lose control in the store.  And just like any good mother, she highlights the good (I don't have lymphoma, so now they can definitely cross it off the list, my doctors can further narrow down the "what it isn't" list with this scan, all but my primary doctor have been listed as "Top Doctors," so I'm in excellent hands) then she realizes we're about 15 feet away from the store's bakery and homemade brownies.  While I am a stress eater, she knows it's a habit I've broken several times (and also made her share of comments when I've fallen off the wagon and didn't notice it), this was one of those times that deserved one of their "OMG" brownies.  I can't give that woman enough credit.  I try to stay calm under pressure, but lately, I admit I suck at it.  I've been an emotional, neurotic mess.  Her?  She's on dialysis 3 days a week, dealing with her own health problems, a demon dog, a chronically ill daughter who was just tested for cancer, and everything else life throws at her, (including a panic attack and a near nuclear emotional meltdown in the middle of a grocery store because while the cancer test was negative, the sarcoid test was negative [I'm pretty sure it was], of all the random shit that could have shown up, an ovarian cyst? The fuck?I'm still trying to wrap my brain around the total radomness around that one..not worried, just one of those out of the blue wtf moments), She's a rock.  And she's my rock. 
      Yes, they're actually called OMG brownies and for good reason.  All these tests, all these years, all these symptoms, results, things you can't fake.  Why can't anyone figure out what this is?
      

"Monsters Are Real..."

    "Monsters are real and ghosts are real, too.  They live inside us, and sometimes they win." --Stephen King.  It's true.  Everyone has the ability to become a monster.  And our past always has a chance to come back to haunt us if we allow it.  For almost all of us, it is our own decision, our own personal choice to decide how much of a monster, if any at all, we become at any time.  As humans, one thing is certain--we all will, and will continue to make mistakes.  That doesn't make us monsters.  It simply makes us humans.  Some of our mistakes will be bigger than others.  Our mistakes affect not only ourselves, but those around us.  We acknowledge them, genuinely apologize for them, if anything can be done to atone for them, we do so, we learn from them, and we move forward.  Some mistakes are easier to move forward from than others.  Forgiveness takes time.  Sometimes it's learning to forgive ourselves that takes the longest.  But that's not what makes us monsters.  It's not learning to forgive ourselves and move forward that turns those mistakes into ghosts.  And those ghosts do haunt us. 
     Especially when it comes to those we love.  We say things we don't mean, do things to hurt each other, and destroy relationships so horribly, there seems to be no way of repairing them.  Sometimes they can be if enough time has passed.  But sometimes bridges have been blown up so many times, hearts and feelings destroyed so often, olive branches, swallowed pride, peace attempts made often enough that the only thing that looks to be a reality is that that person (or persons) are just gone.  And for what?  Ignorance?  Fear?  Stereotypes?  Because it's simply to pass judgement on someone than try to learn the facts because reality is too difficult to face?  Monsters and ghosts.  The monsters are long gone, but the ghosts and the scars from the monsters are still around.
    And it all seems so pointless.  I've accepted many things in my life.  I'm not only tired of fighting in my life, but I'm done fighting.  At least most things.  My health is getting worse.  I spent every day in my life in pain, but was able to ignore it until a decade ago.  In less than three months, I was given a diagnosis.  I thought that pain was bad. 
     Eventually I was able to adjust to it so that I could at least function on a daily basis to take care of day to day things, like shower, go to doctor's appointments, help take care of my nephew, take care of myself on a basic level.  Sure there were bad days and okay days.   I fought through the fatigue.  I even tried returning to college.  Then things got worse and I realized I had NO idea what pain was.  Emotional, physical, or otherwise.  I'm entering my 7th month of this hell.  My 2nd month with a new doctor who knew by my 2nd visit that my previous specialist was wrong the whole time.  All these tests, blood work, X-rays, a CT scan I'm trying to patiently await the results for.  And a pain that is only intensifying.  I have no life right now.  No, this isn't a pity party.  It's just the truth.  I go to doctor's appointments, I pick my mom up, take her on important errands, to her doctors appointments, my own needed shopping (vitamins, prescriptions, basic groceries, more tests, more doctors...), but most of my time is spent in bed trying to will the pain away.  Or when my pain medication begins to work, I pace.  And I use the bottom step or two for basic exercise.  And I stretch.  Just to try to keep moving.  For something that may never have gotten this bad if it was caught in time.  I try not to get angry about this.  I cannot change the past.  I can only wait for that day when my new doctors can give this disease a name and begin the proper treatments and pray that it's not to late to find some relief.  That this hell I'm currently in isn't going to be what the rest of my life is going to be like.  I never imagined that I'd not only be facing new doctors, a series of misdiagnoses, seven months into a whole new level of hell I wouldn't wish on my worst enemy, and of all things to be on the list of possibilities--lymphoma.  Yep.  Cancer.  It's a slim chance, but it's still there.  And until I'm told otherwise, my brain still can't even process that of all things cancer is even ON that list.  More ghosts.
     So I've tried to keep busy.  Except I have the attention span of a gnat and as the pain intensifies, my thoughts and emotions spiral until I'm at the threshold of a world-class panic attack.  And that's when part of me wants to start calling and emailing me all those people who turned against me over the years with phrases like "lazy fat ass, pain pill addicted loser who should just suck it up and get a job like the rest of the real world" and "fibro isn't real...that's why it's called fibro-my-bullshit and most doctor's don't believe it's even real"  "I'd want to kill myself, too, if I was stuck with a loser like you who won't make anything of themselves" "look at you, you just lay in bed all day, popping pain pills, crying why me because it's easier than growing up, facing reality, and getting a real job"  "it's just an excuse because you'd never amount to anything anyway" and tell them things like well, it's not fibro, it's not chronic Lyme.. it IS REAL.  My doctors were WRONG.  I'm facing something that could kill me because some fat cat scumbags didn't know what they were doing, or they did and were too damned afraid of a lawsuit than admit they made a mistake and now it might be too late, so how does that make you feel now?  Still think I'm faking it?  I can barely get to the bathroom most days.  Showers?  It takes me over 30 minutes just to get my bathrobe, get to the bathroom, turn the shower on, undress, and get into the shower... and showering itself is a slow process because my joints are still so swollen and have a very limited range of motion.  I can't even wear a bra most of the time because my lymph nodes under my arms and in my breasts are THAT swollen and tender they hurt.  Sound like bullshit to you still?  Yet I feel sorry for all those people.  I'm the one living in this hell and I pray that no one ever has to go through this.  I pray that no one ever has to go through the process of years of misdiagnoses, of ever having to deal with pain like this, tests like these, the hell that is waiting for the next set of test results.  The fear as one disease after another is crossed off the list and the possible diagnosis is narrowed down.  And the worst bombshell of all--having the C word dropped into your lap as a possibility--even if it's a remote chance--and being left to wait for that phone call for the test results.  No matter how much those words hurt me, no matter how close some of those people were who said such horrible things, some with whom I thought would be there to support me no matter what, I would never wish this hell on anyone.  I'm done fighting.  I'm saving my fight for when I know what's attacking my body because when this disease has a name, I'm going to need everything I have to fight that.  I'll leave you to fight the monsters and ghosts you created.

Why I Renamed My Parakeet A**hole

   A little over 2 years ago, I adopted my mentor and friend's parakeets. Her daughter had just taken in a kitten who would not leave the poor birds alone, so she was looking for a good home for them--a 4 year old male and a 2 year old female.  He's blue, and she's mostly white with some blue.  Naturally, he's named (or was) Blueberry, while her name is Sky. I've had parakeets before, so I know how to take care of them and it's not really difficult.  Except like every other critter in this house, they're not normal.  Except for the fact that they fight like an old married couple constantly--complete with her nagging him every chance she gets.  It finally got to the point where they had to be moved outside my bedroom downstairs because he learned if he starts flitting around the cage, the dog runs up to the cage barking and smacks the cage with her paws, scaring the hell out of Sky.  Normally, I wouldn't mind it too much except my hamster resides on top of their cage, so it's not fair to her to be woken up so rudely several times a day.  (Did I mention he'll do this just to piss Sky off randomly throughout the day as well?  Well, he does.) 
   So until the back room is cleaned out enough for them to be moved, they're down here.  It's not really that bad and they're usually pretty quiet, save some chatting and other normal noises.  Hardly any fighting.  One of them has even taken to devising an alarm system for when my dog tries to sneak down stairs. They tap one of their bell toys in the cage only once to let me know someone (or something) is trying to sneak down the steps.  That took me about a week to realize what he or she was doing.  (I can't see who's doing it, so I'm not sure.)
      Then Blueberry started getting a bit sneaky himself.  He started escaping from his cage.  I'd open the door to change their food or water and all he'd need is a 2 second window and off he'd go.  The first 2 times, he'd flit around my office singing before landing on the window sill and start chuckling and laughing at me.  Seriously.  Why?  Because I have a pile of boxes and other storage items under the windowsill that I can't climb or move out of the way to reach him.  Real funny, huh?  I guess if you weren't the one in pain, having difficulty moving, trying to catch a smartass parakeet who is laughing at you.  I finally lure him out and after a few more attempts, I catch him.  He's escaped a few more times after that and the same results.  He finds a spot I can't reach, laughs, I curse, he laughs harder, he flits around knowing I won't risk hurting him, laughs some more, until he's caught and returned to his cage.  So I renamed him Asshole.  And he responds to it.  Especially after today.  Usually he flits around my office.  Today he decided to do a bit more exploring.  A few laps around the office and right into my bedroom he goes (which is on the other side of my office wall, separated by an interior window with a 30 gallon fish tank.  I turned the ceiling fan off, warned my mom to keep the dog out of the basement just in time for him to come BACK into my office, but didn't see where he landed.  So now Asshole is not only loose in the basement, he's MIA.  I grab my cigarettes, lighter, ashtray, and settle down at my desk, figuring he has to come out eventually.  I had my towel ready to catch him.  He flew right back into my room and perched himself on the fish tank light, right where I couldn't get him. There wasn't enough room to catch him and odds are, I'd of accidentally knocked him into the tank, since there's no cover for it.  And he's sitting there, arrogant and yes, laughing.  And there I am at my desk spewing every insult and curse I can think of at him. 
    Mom asks what the hell is going on and I explain the situation.  She suggests I block off his escape route into the office, get him into my room and catch him when he lands.  He did fly into my room, all right.  Except he flew right out my door and right. up. the. stairs.  And of course into the storage room with about 3 feet of crap on the floors and an 8' closet with a shelf on top that we can't reach.  (Did I mention during his flight up the stairs he was STILL laughing?) So mom covers the doorway, I grab the fishing pole, hand mom the towel, and being careful not to step on anything in case he's hiding under any of it, try to force him off the top of the closet.  Turns out he's in the corner on a shelf.  He couldn't control laughing at us, the asshole.  I finally managed to catch him (and a sliver of glass in my foot) and the towel suddenly stopped moving.  Uh oh.  I was afraid I'd killed him by accident or he gave himself a heart attack with all that flying. 
    So I slowly unwrapped the towel to check on him, but he buried himself pretty good.  Just as I got a glimpse of blue feathers, I heard that evil chuckle and he was off--AGAIN.  The asshole was just playing dead!  I finally sent him flying in mom's direction, just as I managed to step on another piece of glass when she caught him (but she was NOT about to fall for the playing dead routine again).  She brought him back to his cage (which was open the whole time and Sky never once tried to escape since she's afraid of being out of the cage) and as she's unwrapping the towel and blocking any way for him to escape, he's trying to bite her repeatedly!  And he wonders why I renamed him Asshole... So it looks like in addition to a new water bottle for the hamster, it looks like I'm going to have to find a feeder and water bottle that I can change from the outside of their cage, since his only saving grace when he decided to check out the upstairs today was the fact that the mutt was outside.  Had she been inside during his little escapade, things could have gotten real ugly, real fast for all of us. 

Let the Pacing Commence

    So today was the most difficult of the tests so far.  By now I've racked up 10 doctors appointments with at least another 4 this month, X-rays, over 60 pages of blood test results, one less prescription (for now, depending on how my levels stay), three new prescriptions, at least one new specialist with three on the horizon, and who knows how much money in medical bills because except for a $29 neurologists bill, a $19 primary doctor's bill, and a $15 ER bill (and an additional $50 the hospital is trying to collect because my insurance didn't pay them as much as they anticipated, so they're expecting ME to cover the rest--yeah.  Right.  Not after the way they treated me that day.  I have a few ideas what they can do with THAT particular bill, but expecting me to pay it isn't one of them), today was hopefully the last of the major tests.
     I had to go in for a CT scan of my chest, abdomen, and pelvis.  Until now, I've only had my chest and pelvis done on separate occasions.  The latter I was introduced to the nightmare that is Barium Sulfate suspension.  For those of you lucky enough to never have the experience, consider yourselves lucky.  The unflavored stuff is a bit rough, but it's a texture thing--it has no taste to it.  It's more of a flavorless, thick, chalky, gross stuff.  (Think milk of magnesia, pepto bismol, or several sites compared it to a combination of what happens when chalk meets latex paint minus the smell).  It's a pretty accurate description.  It's tough, but it's when they attempt to flavor it with a sickeningly sweet, artificial orange stuff that makes it even worse.  And lucky me, someone screwed up the shipment, so I got stuck with the orange flavor.  Essentially, the purpose of drinking it is so that it lines your entire GI tract to produce a better contrast during the scan.  No food or water for a certain time before the test and a lot of suspension has to be taken at intervals before the test.  If you can get it down, at first, the hard part is keeping it in your stomach because it's thick, heavy, and doesn't quite sit right. 
     My mom came with me today just in case I had any problems before the test (like vomiting), or side effects of the suspension (yeah.. did I mention the other wonderful side effect?  As it passes through your digestive tract, it gives you almost NO warning when it's on its way out and it can last for hours... NOT fun)  My nerves were on edge today because this was it.  My stomach threatened to revolt at any moment, and because of new laws passed, even imaging places insist on asking you 500 questions about your health, medical history, medications; you name it, they ask you now.  Keep in mind I was just there 2 weeks ago for X-rays, so they had all of this info, but I can understand reviewing important things like allergies.  I did get a bit upset when they couldn't find my prescription list and had me fill out a 2 page medical form--AGAIN.  "Why did you go to the dr?" was one of the questions (just like the last time)  I simply put "because I was and am sick."  I tend to get bitchy when my anxiety is pushing towards panic and I'm being asked a myriad of stupid questions I just answered less than 2 weeks ago.  Then a mother with her 4 year old son came in.
     The waiting room was empty.  I was a few chairs away from my mom because it was closer to the bathroom and my stomach was still threatening to revolt on me, but this woman picked the chair 2 seats away from me, putting her hyper kid next to me.  I moved one seat down to finish filling out my form.  She got a little pissy, but he kept kicking me and shaking my chair.  Of course he sits next to me AGAIN.  So I got up and threw myself in a seat 2 away from my mom.  If looks could kill, I think the boy's mom would've killed me on the spot.  I just told her next time I'll just puke on her son then.  She didn't bother me after that.   I'm scared, barely containing a major panic attack, full of a thick, contrast suspension fluid that is threatening to come out either end of me, and about to go for a test that yes, is looking to confirm a diagnosis of a specific autoimmune disease, but is also looking for a form of cancer.  Lymphoma to be exact.  And that scares the hell out of me.
     I understand my doctor's logic.  The reasonable, logical, rational part of my brain understands it as well.  Some of my symptoms fit.  There's really nothing in over a decade of labs to indicate I have it, BUT, I have to get the scan done, so look for both while I'm there so that she can definitively cross it off the list of what this is not.  It makes sense.  It's logical.  The odds are so slim and it will be one more thing she can say with certainty that it's not.  Right?  But there it is.  No one ever wants to hear that scary "C" word come up in conjunction with a test that they're going in for.  Ever.  It's enough to rattle anyone's nerves. 
     At least I got to look at the scans when my insides started to settle down.  Like everything else (except X-rays), I had NO clue what the hell I was looking at except black, grey, and white swirly blobby things, but I've always found it neat to see what my insides look like.  Bones I know.  I did see that my lower spine curves off in a way it's not supposed to, though.  Didn't expect to see that.  I mean, it's not so horrible that I walk bent sideways, but it's definitely noticeable in the scan.  I'll have to ask the doc about that one, since I doubt the radiologist will mention it, considering what he (or she) is looking for.  My doctor should have the results sometime next week and I hope I get a call then instead of having to wait until the end of the month when my next appointment is, or the next 3+ weeks are just plain going to suck even with a lot of other things to take care of.  Hell, I wrote out my bills at 2am.  Who does that?  Okay, so I do.  But I couldn't sleep, I read the same paragraph a dozen times, and there's nothing on TV, so I figured I'd try to be constructive. (I also filled out over a dozen environmental surveys and signed even more petitions while I was at it and made a note to buy more stamps) And if I do have to wait that long for results, I have a feeling Xanax just isn't going to cut it. 

Yeah....

      I spent years being called a hypochondriac.  A decade ago, as my labs improved, my primary doctor sent me off to a rheumatologist to prove that I was.  Three rheumatologists, actually.  He was as shocked as I was when they all said I had Fibromyalgia--an actual medical disease.  He got pissed off and fired me as his patient.  Not because I was sick, but because he was wrong.  Ten years later, I find myself sicker and misdiagnosed... again.  I don't have Fibromyalgia.  And scrambling to make appointments with my other doctors to cover my soon-to-be-fired rheumatologist's prescriptions.  My new rheumatologist would have no problem covering all of them, but she has limited office hours and feels comfortable covering only my anti-rheumatic medication.  She wants my neurologist to cover my anti-seizure medication and my pain medication, and my primary doctor to cover the rest.  She pulled me off my prescription vitamins for now,  change how much OTC I take, but wants to keep an eye on my levels.  (It's also much cheaper).  I go in for more tests.  So what do I have?  I don't know.  But it's definitely not hypocondria, psychosomatic, Chronic Lyme Disease, or Fibromyalgia.  She's 99% certain it's autoimmune--probably Sarcoidosis or something similar, or.... a tiny chance it might be lymphoma.  I have to go in for a CT scan.  She doubts it's lymphoma, but can't completely rule it out until all the tests are done.  I know what I'll be doing tomorrow!  Still have to wait weeks for the results, though.  Unless it is cancer.  I'm sure she'd call me in early if it was.
      Now I'm left trying to reconcile the past 10 years.  I trusted a doctor to take care of me.  Instead, he was so determined to make all my symptoms and tests fit into fibromyalgia that he overlooked completely the bigger picture--my health and my picture.  Whatever autoimmune disease this is, it could have been caught earlier and treated earlier.  It could have been stopped before it reached this point.  Autoimmune diseases have a tendency to be degenerative.  Many can be controlled with medication, but it doesn't cure or stop.  It simply slows it down.  So yeah, I'm more than a little pissed at that dismissive asshole.  I trusted a medical professional to take care of me for that long (even against my instincts at times because he made sense) and found out he was wrong.  And out of the 3 specialists 10 years ago, I chose him and stayed with him because he listened to me.  He was the only one who gave me hope of having a normal life in the future--not just with medications, but a combination of therapies based on research--solid, scientific research.  And solid scientific research was something I still believe in.  I may have been viewed as a dumbass mechanic, but I was always a scientist at heart just as long as I had turned wrenches.  (Side note--never underestimate my intelligence--you'll regret it.)  I wasted ten years chasing a ghost. But now once I get my prescriptions squared away, I have to request a copy of my entire file for my records (because of disability), THEN I get to fire him.  I would love nothing more than to take the official diagnosis when I have it, show up at his office unannounced, and call him out for the arrogant fraud he is.  I defended this man.  I recommended him to people as an excellent doctor.  And for what?
     But hey, at least to those scumbags who think I've spent the last decade claiming I have a "fake" disease, using it as an excuse to lay on my ass most of the time to pop pain killers to lay around the house collecting disability while they go to work every day to pay taxes to pay for my disability (which, by the way, SSD is something I paid into, so therefore I EARNED it with the taxes I PAID--not SSI, which is what they're thinking of, but I'm just splitting hairs now) I have a REAL disease.  Something degenerative.  Something that isn't going away.  No, I'm not happy about it, but it is what it is.

Unwinding

    Contrary to popular belief, I've never been very good at being a sloth.  Even at my worst, I find my OCD kicking in and start doing little things.  I can't tell you how many times I've rearranged my desk, nighstand, book shelves, cleaned out junk drawers (where the hell does all that crap keep coming from?), and stuff like that.  Well, that's when I'm not so bad that I'm literally sleeping about 20 hours a day no matter how hard I try not to.  It's no secret that my life is extremely stressful either.  Some stress I can control, but a majority of it I can't.  I'm still working on that balance of how I react to the stress of the things I have no control over.  It's not easy.  I was in a pretty serious car accident my senior year in high school and among the worst of my injuries was a broken neck and a case of whiplash so severe I no longer have a curve in my neck.  So when I start to become stressed, the muscles in my neck and shoulders become tense (like everyone else) and the headaches that result are about a step below a migraine.  Considering the rest of my medical problems, it just all sucks to say the least.
     I woke up from another weird dream at 4 this morning soaked again and knew I wasn't going back to sleep.  It's been a very emotionally draining week and the next few weeks aren't looking to be any easier as I'm about to finally get a diagnosis after well over a decade of hearing psychosomatic, hypochondriac, then one misdiagnosis after another.  It doesn't help that another front is coming through with over an inch of rain with it, so my pain level is pretty high up there.  Then I caught a few breaks that changed everything for the next few days.
     I couldn't get in to see my neurologist until July, but he put me on the top of his cancelation list yesterday.  At 10am I got a call from his nurse--I go in early next week to see him for a check up, talk to him about my "magical morphing migraines," and a few other things.  It also means I'm one step closer to being able to fire that jackass rheumatologist. (Yay!)  Unfortunately, I was planning on visiting my grandmother that day, but mom & I will go another day.  The sooner I finish firing that jackass, the faster at least some stress will ease.
     I spent a few hours just relaxing in the recliner talking to mom and before I realized it, it was almost 3.  Other than taking the call from my neurologist and doing a quick online search for a few things, I hadn't done anything.  I was relaxed and.... I didn't have a headache!  By 7, I decided that this entire weekend I wasn't going to do a damn thing.  At all.  I'm going to just relax because I can, stretch out, decompress, and deal with everything on Monday because I can.  And for my own sanity, I have to.

IT'S NOT LUPUS!! Ok... Then What?

    I went back to the rheumatologist yesterday--headache and all.  I've dug my heels (and bank account) in this far and I want a diagnosis.  Except now it's getting scary.  It's one thing to know your body enough to know something is wrong and have your gut know that this isn't just fibromyaglia and a virus, but to have not one, not two, but  three doctors agree with you while they try to figure it out, well... yeah.  The third, the new rheumatologist is determined to figure out just what "it" is, considering it definitely isn't neurological, tests confirmed it wasn't tick borne, hepatic, and most likely wasn't viral (unless today's test said otherwise), so off we go to autoimmune and the "other" category.  Unless it's Lyme--again.  The doc sent my test to a special private lab just to be on the safe side with that one.
     Turns out, no, it's not viral at all. I've been tortured with doxicycline for the past few years for NO reason because odds are the past few positive Lyme tests were false positives (dumbass doctors and their cheap ass, corner cutting tests!), and well, IT'S NOT LUPUS!  Sounds like something straight out of House, right?  Welcome to my life..but it gets better!  Okay, not really.  Kind of.
      I've been misdiagnosed for over a decade now.  I don't have Fibromyalgia (yay!).  I have an autoimmune disorder.  (Um. Yeah) Of that, the doc is 100% certain of.  Another 15 pages of lab results (but there were only like 8 vials, if that--nice!) ruled out RA, Lupus (I also have over a decade of labs to support those claims), anything involving my thyroid, muscle proteins, and a bunch of other stuff (I started to get really nervous as she checked off what it wasn't).  What is it?  I don't know. Well, we don't.  Not yet.  I have to go in for a CT scan of my chest and abdomen to either confirm sarcoidosis or send her to the next on the list (something similar, but she refused to tell me--I'm not sure if I know that's a good thing or not).  But I do know that I am that much closer to having a diagnosis.  Unfortunately, after dealing with it for over a decade, odds are, it's going to be something that I'm going to have to manage, instead of hope for remission of some sort.  And another bonus?  Glad I stopped taking the muscle relaxers that really weren't working--as we were talking about my prescriptions--what the doc would and wouldn't take over (and which doc should take over) it turns out that the muscle relaxer my still soon-to-be-fired rheumy (have to wait to straighten out the rx thing, which'll be another 6-8 weeks)  gave me fell out of favor because of its possible toxicity and highly addictive properties.  It's not SO toxic that the FDA pulled it off shelves (worse drugs are out there at the moment), but it fell out of favor years ago for a reason.  So he not only misdiagnosed me from the start, he tried to kill me.  Great. (I'll rant about his sorry arse later).
     But now reality is starting to sink in.  This is real.  It's one thing to learn about these diseases, to want to help others.  To have an invisible illness that you know isn't degenerative, but understand how hard it is to live a normal life just the same and raise awareness for all of them.  It's like looking through a window, feeling their pain, but at the same time thinking "thank God that isn't me."  Except now it is.  And now the stakes are higher.  Because before there was that tiny bit of hope that this was maybe just a virus--a series of lab errors.  But it's not. It's real. And it has a very real consequence.  I found out a few years ago I'm a match to be able to donate a kidney to my mom.  Having an autoimmune disorder like this--like most of them--automatically disqualifies me.  Nothing could be done earlier because I kept screwing up my knees and had to have surgery (or a few dozen stitches) and her blood pressure wasn't under control enough, but now it's too late.  But somehow she knew that already and already accepted it.  I wish it was that easy for me.  I can accept anything else that's thrown at me after a bit of processing, but this is definitely going to take awhile.