Worn, Ragged, Down, but Not Out...

    I can't even begin to describe how exhausted and beaten up I feel.  It's not from this past weekend (although dealing with a very stressed out, separation anxieted puppy certainly did its share of damage), but just the past 5 months of this latest flare up.  I can't really even call it a flare up after thinking about the past few years.  I blindly followed my rheumatologist's advice anytime these symptoms cropped up.  And even though this flare is the worst to date, even though I know I can just call his office and say "okay, just call in the prescription for the steroids, I'll take the damned things" knowing that in a few days I'll feel better for a few months (with exception of a 25lb weight gain, severe mood swings, and all the temporary, but horrible side effects that come along with steroids), I just can't do it this time.  Because I know now with certainty that this isn't just a severe Fibromyalgia flare.  This isn't another round of Lyme Disease, or a coincidental virus (which has happened twice in the past decade).  It's something else.  And after today, I'm another step closer to finding out what it is.
       I had my second appointment with my ID specialist today.  Naturally, I get a letter over the weekend from my rheumatologists office claiming that they tried to contact me several times last week about an anti-inflammatory medication (that would make anti-inflammatory med #3 from this guy), except for one tiny little flaw--there were no missed calls and no voice mails.  I might almost believe the letter if I hadn't received over a dozen calls and a handful of voicemails from others during that time.  Turns out, he wants me on dangerous amounts of ibuprofen in an attempt to control my "fibromyalgia flare."  In a round about way, if it really WAS fibro attacking my joints, it might just work if it didn't shut down my kidneys and liver first.... I spent over a half hour talking to my ID specialist reviewing my labs, the nightmare visit (and phone calls from) my rheumatologist, went through another brief physical exam, answered about another 100 questions, and waited patiently as he went back over my charts and 5 months worth of labs from 2 doctors and his office.  And held my breath as he shook his head.  (Never a good sign when you see a doctor looking frustrated and shaking his head while he's looking over your charts)
     He finally looks up at me and tells me that he's going to draw a basic panel, even though it's been less than a month since my last test, but I'm STILL running a low-ish grade fever.  He also admits that he's out of his league and specialty based on my lab results and symptoms, but he knows a doctor who should be able to help--another rheumatologist.  He explains that even though he's not a trained rheumatologist, his educated guess would be either Polymyalgia Rheumatica or Still's Disease, but he's not entirely certain which one, if either one.  He does agree with my neurologist that this definitely is not my fibromyaglia in any way shape or form (but has no doubt that I do have it and that it is real, but it just plays no part in what's going on now), and it's not the result of stress.  I actually broke down in tears because for the second time in 3 months a specialist has told me the same thing--it's not fibro, it's not stress, it's not in my head (especially since you can't exactly fake a blood test), and he's in over his head, but believes he knows someone who can help and has no problem referring me over to them if it means finding a diagnosis, receiving treatment, and finding relief--you know, those things doctors are supposed to do? 
     I've heard of PMR before, but I'm not really familiar with it, other than the Latin translation--"many painful joints" and my dr explained that it's treated with low doses of prednisone daily or every other day from either years to the rest of my life (eek! that S word again!!)  I have never heard of Still's Disease before today and only did some cursory research as to how it's diagnosed when I got home.  All I really know about both are they are autoimmune disorders that affect the joints.  I'm not going to get my hopes up too high with the new rheumatologist given my history with doctors, but we'll see.  One red flag went up when I made my appointment this afternoon--no one in his practice treats or deals with fibromyalgia.  At least my neurologist does if it comes down to it, but only time will tell.  My fibro is on the back burner compared to what's going on now.  I just want a diagnosis and with Faith, Hope, and a little bit of good luck, I'll have it in as early as 2 weeks.

Gracie & Me

    I considered the title Marley & Me, but couldn't for 3 reasons: serious copyright infringement, my dog's name is Gracie, and well, at this point, she seems to make Marley look pretty tame, even if her name WAS Marley. 
      I found out Thursday night that my parents were going away this weekend and I thought great!  I'll have a weekend to relax in a nice, quiet house.  Just me and the dog.  (The other pets take 5 minutes to take care of and are pretty quiet, so I don't really count them).  Some of those who think you know me are probably already thinking "wait, isn't that what you do already?  Lay in your bed, play on your computer, watch tv, etc.  That's not relaxing enough for you?"  Well, no.  I wouldn't call that relaxing.  I'm sick, not lazy.  And I hardly find pacing my room, or being in too much pain to move, or being housebound with my mother almost all day, every day relaxing.
      I had no intentions of throwing a party or anything like that.  If I felt up to it, I was hoping to get a good chunk of cleaning and organizing done yesterday or today.  If not, finally get a chance to sink my teeth into that new King book i bought Wednesday.  Basically, just enjoy and make use of the silence.  Yeah, right.  I knew one thing:  I couldn't go too far this weekend because my dog had round #2 of a vaccine, so I had to keep an eye on her just in case. 
         My dad's been gone before.  He's been gone a few days overnight for work here and there, a week in the hospital when he had his heart surgery.. my mom's been gone all day, but never over night since we adopted Gracie.  Every dog we've owned has been very attached to my mom and very protective of her kids.  My dad could go for days at a time and that was fine, but he'd be pounced upon and licked to death when he came home.  It was always mom they felt and acted lost without.  My pitbull wouldn't eat her food and barely touch her water (but would never pass up a treat or table food) when mom was gone... so I kind of expected much the same of Gracie.  Big mistake.
          She was very confused late Friday night around bed time and kept pacing my bedroom floor.  I thought maybe she had to go out, but when I went upstairs, she ran right to my parents closed bedroom door.  Then I realized she was afraid my mom went to bed without her.  I let her in to sniff around, show her mom wasn't home, she came out, let her outside, and we went to bed.  I started to doze off and finally fell asleep early.  Around midnight she started going berserk!  Barking, growling, running through the house... then would pace the house growling under her breath.  And start over again.  She was actually making me paranoid.  She finally barked herself into exhaustion around 5 or 6am.  I was too wide awake to sleep.  I started to doze off around noon when she started again.  And continued this fun little game all day, with short little breaks.  I called the vet to see if I couldn't give her benadryl that night to help her (and me) sleep because I knew she was doing this because mom wasn't home and was given the green light (YES!).  At some point in the afternoon, I found myself chasing her through the house with a rubber spatula (which of course, I tripped over the bottom of my pantleg, hit the table, and broke it....I can't remember if it was one mom loved or hated), then went after her with a wooden spoon just to get her to stop the damn barking.... I had no intention of hitting her, but I just couldn't take it anymore!  It didn't work, so I resorted to bribery.  That worked for a little while. At least until dinner. 
      Not too long before dinner, it was about "that time" she usually goes out, so up the stairs we go and she stops in the kitchen.  I assumed it was some kind of bug or another based on how she was acting.  Like every other dog we've ever had, she seems to have a thing for stalking, playing with, and killing bugs.  I assumed it was another one of those damn spider crickets based on her reactions to it.  What I didn't realize was that it had landed smack in the middle of my sweatshirt.  Keep in mind my 40+lb dog has serious target fixation--all she saw was that creepy damn bug... not the person it landed on.  All I saw was this massive ball of fur diving at me full force as she slammed me into the door, knocking the wind out of me, then sitting in front of me, triumphantly over the dead, smushed body of the cricket. 
       The benadryl worked.  I still feel bad I had to resort to drugs to get her (and me) to sleep.  She slept all night, while I slept about half the night.  I'm sore, I'm exhausted, beaten, and my parents are due home at some point today.  She's just calmly sitting on the couch gnawing on one of her bones.  I hope at least they had a relaxing weekend because I think it's going to take me at least a week to recover from this.  All because of 1 dog. 

Beauty, Work, and Weeds

  Gardening, like beauty, requires work.  But even as I begin this blog, I have to point out 2 things:  yes, beauty in nature and beauty in females are found naturally all around us (you don't have to look very far to find either) and I will most likely set forth on a series of blogs on the distorted definition of what society and the media consider to be beautiful.  It's not only one of my biggest pet peeves, but also something I have studied to quite an extent, only adding to my agitation on the topic. 
    You can look around you and find a beautiful natural garden in most places that hasn't been paved over by sidewalks, buildings, concrete, and asphalt, but sometimes you come across a half cleared patch of land that seems to have a lot of potential with a little bit of work and a trip to a green house to buy some plants, bushes, shrubbery, and possibly a few trees.  Then you might add a bit of mulch, possibly a border, and you have not only a beautiful garden, but something to show for your hard work.  Even after you finish planting, the work isn't finished.  You have to trim, preen, and weed the garden to maintain the beautiful look.  Weeds have a funny way of popping up and choking what you grew.  Not to mention most weeds aren't exactly pretty looking.  (Although, some are pretty looking, but the result is the same.  They eventually take over your beautiful garden, using up the nutrients your plants need to thrive, block out the sunlight, choke your plants, and sometimes eventually either kill them, or the plants never quite grow as robust as they used to).
     The same is true for women.  Some prefer to spend a lot of time making themselves feel beautiful (all women are beautiful in my opinion), while others don't.  We find the right body wash or soap, the right shampoo and conditioner, the right lotions to make our skin feel great (and smell great), some use a lot of makeup, while some don't use any.  We buy clothes, shoes, purses to make ourselves look and feel beautiful, do our hair (cut, style, or just throw it back in an elastic), some even colour their hair.  Some love to tan themselves, get their nails done, pedicures, waxing, the list is endless.  All in an effort to make ourselves feel beautiful (and/or appear beautiful to others). 
      Along this line of thought includes what we do to our bodies.  I'll skip the whole extreme dieting and workout regimes, but many of us try to be as healthy as we can, even when we're chronically ill.  This includes invisibly ill.  A dear friend of mine has mentioned the name "Bob" several times.  She's married, has children (none of whom are named Bob), but rather Bob is what she calls her illnesses.  It's much easier to just say Bob when talking about them in front of loved ones and close friends than spouting cold, complicated medical terms. When she's trying to explain others what her illnesses are and how they affect her, she uses their real names.  This is far from a new concept.  I don't know why, but "Bob" seems to be a common term people use to ignore or refer to the pink elephant in the room.  It seems to make it easier somehow to name the pink elephant something so harmless.  Keep in mind, she's a very unique individual, but at the same time, Bob, in all its commonness, somehow suits her. 
     Myself?  I have been diagnosed with Fifths Disease, Fibromyalgia, COPD, Asthma, Chronic Lyme Disease, Epstein Barr Virus, and "something else."  That "something else" has me going back and forth between doctors as they try to figure it out.  And I'm tired of saying "whatever the hell this is," or "that something else."  So for the past few days, I've been trying to come up with a name for it.  I didn't want to pick some technical sounding name, because with my luck, it'll actually be some oddball rare disease that actually exists.  I also didn't want to name it something cute like "fluffy" or "the thing" because it just makes it sound like I'm full of crap and being over dramatic.  "Bob" would make me sound too much like a copy cat and to pick an adjective or adverb would just be too corny.  Then for whatever reason, "badyl" came to mind.  It's the Polish word for weed.  Not the kind you smoke to get high, or kill pain, or combat nausea, but the kind that invades your beautiful gardens and sucks the life out of your plants.  It's pronounced similar to the word "bottle."  But it fits perfectly and sounds soooo much better than "whatever the hell this is."  So, "badyl" it is.  And I have not only Chris to thank me, but my blogs to thank as well. 

Laughter is the Best Medicine

    My original title for this blog was going to be something along the lines of "No, you really can't die of embarrassment" or something similar.  But considering how much I laughed despite my embarrassment, the current title works much better. 
      This week has been a pretty busy one.  Monday I found myself running a little behind, so I ended up rushing through the grocery store to pick up a few needed things before I picked my mom up from dialysis.  I was so proud that I remembered 2 last-second things she added to the list, but I forgot to write down, only to forget the last 2 items on the list halfway down the road to pick her up.  Oops.  But I got the bagels and cream cheese, so that counts, right? :)
       Stephen King's newest book, Wind Through the Keyhole hit the shelves yesterday, so I had to pick it up today after I picked up mom.  Normally, when he publishes a book, I could wait a little while, but it's the 8th installment of his Dark Tower series, so there wasn't such a thing.  The series is tied for #1 as my favorite with The Stand as far as his books go.  She also wanted to go to a store that was on the way back, so it was a win-win.  I received a text message from a good friend of ours yesterday morning asking if my mom and me wanted to go shopping.  We hadn't seen her in quite some time, between being sick and that crazy little thing called life.  And like us, more often than not, when we're not rushing off to one dr or another or grocery shopping, she spends a lot of time stuck at home.  I  gave her our plans for today and invited her to join us.  I didn't hear back from her, so I assumed she found something else to do.
     Later last night, she said it sounded like a great idea and to let her know in the morning when I was leaving.  In all the years I've known her, she's never been much of a morning person... or much of a person to be awake before noon unless she had to go to work, for that matter.  And unless it was for work, she was almost always running late.  It was just something we accept about her as a friend, except when it comes time to picking mom up, being late isn't an option.  So I called her a half hour before I left just to make sure she was at least awake.  I almost fell over when she answered halfway through the second ring and was not only awake, but was almost ready to leave!  So I picked her up, went for coffee, picked up a cup for mom (a must anytime we go out shopping after dialysis if I want to live), picked up mom, and off to B&N we went.  They waited in the car since I was only going in for 1 book.  Right.  5 minutes and 4 books later... (50 Shades of Grey, and the first 2 Hunger Games books in hardcover)  I stopped from buying the third so I wouldn't overspend (too late) AND so I had an excuse to return soon.  It was off to Bed Bath & Beyond.  And the REAL fun. 
    I knew my mother needed makeup (most BB&Bs now have Harmon stores in them now) and a few kitchen gadgets and other than a travel mug for her coffee & tea, I didn't know what Ter needed.  I needed a new tube of chap stick to keep in my car and a few vitamins.  Nothing much, but it still got us all out of the house.. I emphasize the last 4 lines of the last sentence.  And again emphasize them.  Aside from playing with almost every shiny and colourful kitchen gadget (which we're all guilty of), smelling almost all the candles that caught their attention (I was still sneezing from the seasoning section, so I tried to stay away from the candles), it wasn't too bad until it got closer to the checkout line.  You know, where all the cool little gadgets, toys, things that make noise, things like that are kept?  Mom ended up with a small hedgehog doll that giggled when you squeezed it and a stuffed pill that laughed like a little kid.  Both terrorized the fuzzlemutt.  Except she seemed to think the hedgehog was more of a baby than a toy.  The pill still laughs, but is in a few pieces.  Ter paid for her stuff, I paid for moms and as I was getting my receipt they called out my name in chorus.  Even all the cashiers looked up.  There was a display of those little animal keychains that when you push the buttons, their little LED eyes light up and they quack, squawk, etc.   Great.  Who needs to take kids to the store when you have those 2, right?  Then my mom spotted the owl one (who sounded more like a hawk than an owl).  Of course I couldn't resist offering to buy it for her, considering her love for hours and let's face it... it WAS another way in which to torture the dog.  (Which it does... it's a great deterrent when she's doing something wrong.)  Who needs to yell when you have a 1" screeching owl with glowing eyes going off at you, right? 
         But I did learn (and relearn) some important things today:  laughter is sometimes the best way to deal with things, even embarrassment.  Especially when you're the one being embarrassed in public by your own mother as a grown adult. (lesson relearned)  And no matter how much pain I'm in, or how much like hell I'm feeling--I have to get her out of this house more often.  :)

Service Dogs

    Dogs (and pets in general) have been scientifically proven to reduce stress and lower anxiety for almost all of their owners.  Service dogs are certainly no exception, but they just work a little harder than your average, every day dog.  They're also used for many purposes.  There are specially trained rescue dogs (not the kind you or I might adopt from a pound, shelter, foster home, or rescue group to give a "furrever home to), but they're trained to find victims in the wake of disaster when it's just too unsafe for humans to search.  They go climbing and digging through rubble and debris in those first crucial hours to find survivors and alert rescue workers and their handlers so that humans can find a way to get a victim out.  Sadly, many of these dogs come at a huge price.  Their lifespans are often shortened due to the conditions they work in (chemicals, dust, debris).. the kind of things humans can easily be suited up to protect themselves from, but not their superhero counterparts.  And because of this, many times, their vet bills are also astronomical (but almost always paid because taking life saving measures to save a rescue dog is always worth the price when that dog has saved many human lives).  There are seeing eye dogs for the blind, dogs that are trained to assist the deaf, dogs trained to help epilepsy patients, patients with limited mobility, patients with PTSD, anxiety, and other mental illnesses that just having a trained, furry, 4 footed friend next to them in public means the difference between having a serious panic attack, a possible flash back, or even the difference between remaining locked in the house versus interacting with the outside world.
      Federal law requires all places to allow service dogs everywhere, regardless of the behavior of past service dogs.  No, service dogs are not required to wear special vests, tags, costumes, the owner is not required to show paperwork to prove that their dog is a service dog, and technically, a place isn't allowed to ask if a dog is a service dog, or ask for proof of it because it's considered discrimination.
       Technically, you can train to have your own dog certified as a service dog, but it can be very expensive.  Most of the service dogs out there have been raised since they were very young to be service dogs.  And well, I can barely get my dog to listen to me half the time to even think about getting her to listen to anyone else or train her to be a certified service dog.
     But here's the other funny thing about dogs.  They just know.  Some of us don't need to have a service dog with us everywhere we go.  Just having them in the house is enough.  Because they know when we need them.  Granted, my dog still hasn't quite caught up to the whole when my mom or I are in pain or not feeling well, we don't want to be pounced on, no matter how cute she is, or how cute it is.  It hurts.  But she means well.  She just seems to know.  She pays us extra attention.  She does cute stupid puppy tricks right in front of us to get us to laugh.. and if we don't, she pounces on us, or flops on her back in our lap, sticks her face in ours, throws her toys at us (because her toys always make her feel better, so they might make us feel better, right?)
      And then there was last night.  I received a bit of possible sad news:  someone I've known for years left on a road trip for the winter (since Irene took out the furnace and hot water heater), but might not be coming back because the damage to his house was far more extensive than initially thought.  I recently found myself looking forward to his return for a lot of reasons.  (Long story short, he was probably that one guy that I've been looking for all along who was right in front of (and behind me) the entire time I went from one disastrous relationship to another).  As I sat there in bed, curled up in my comforter trying not to cry at the news and my own stupidity, up pops the dog.  At first, she just sat there staring at me, head cocked to the side, ears forward, eyes wide, taking the situation in with a look of curiosity and philosophy.  Then she leapt off the bed, grabbed her creepy deflated pink chicken, hopped back up on the bed, dropped it in my lap, and laid down in front of me, just staring at me waiting for a response.  I had to laugh.  Then she stole the toy back, dropped it next to me, and sprawled her chubby, 45lb body across my lap so I could rub her belly.  The toy is creepy, but somehow I get the feeling she thinks I like it (I found it in my purse this morning), but all she was trying to do was make me feel better.  Trainable or not, THAT'S a service dog. 

That's what she gave me to cheer me up

Flowers Aren't the Only Things Growing Right Now

      So somehow during all of this chaos, searching, waiting, finding distraction, and realizing that through all of this, I can not only help others in a similar positions of my own, I can help bring awareness to these "invisible illnesses."  I also stumbled upon an amazing group of people and was given an opportunity to help run a website dedicated to this purpose for which I feel both thankful and blessed.  After talking to a few friends about this new site (which we're still in the process of getting it off the ground), I realized something:  the site doesn't just have to be about invisible physical illnesses like fibromyalgia, lupus, rheumatoid arthritis, myositis, juvenile arthritis... the list goes on and on when it comes to autoimmune and autoimmune-like illnesses, but it can also be a site to raise awareness and help those living with (and loved ones living with or know someone with help better understand) about a more common, more invisible, and a more stigmatized group of illnesses--mental illness. 
      Some mental illnesses or diseases are far more common than others, such as depression, anxiety, and PTSD (Post Traumatic Stress Disorder), while others are not so common (Borderline Personality Disorder, Schizophrenia, Dissociative Identity Disorder (formally known as Multiple Personality Disorder).  And as with anything else, there is a huge range of severity with all of these diseases.  There are also no black and white, scientific medical tests to diagnose a patient.  It's not like you can go to your primary care doctor (although some people do and receive a diagnosis) or a psychiatrist, get some blood drawn, and get a diagnosis based on some lab results.  It's a process.  The doctor asks a myriad of questions, including your symptoms, generally runs some basic tests (not lab tests, but rather a series of psychological based tests), and eventually comes to a conclusion based on the results and a massive book that is used to help in the diagnosing process.  It's not an exact science, but it is based on years of scientific and empirical research.  In many cases, medication can be used to treat the disease to either bring it under control, it's recommended to combine medication and therapy to help a patient, sometimes medication alone helps, and sometimes just going through therapy helps.  It all depends on the patient, the disease, and the severity of the disease.
      In some cases of depression, anxiety, PTSD, and obsessive compulsive disorder, a combination of medication of therapy and medication can help "cure" a patient.  It all depends on what brought the patient to that point in the first place.  In other cases, such as schizophrenia and bipolar disorder, medication is something that will most likely be required for the rest of their life to help keep their symptoms under control.
       The problem with mental illness or disease is this:  there is a HUGE stigma attached to it.  Even the word "mental" brings up images of strait jackets, all kinds of negative connotations, those horror stories you hear on the news about escaped asylum patients and the atrocious things they've done... the word "crazy..." I can go on.  But the fact is, this simply isn't true.  Instances like that are extremely rare.  Yes, most of us (myself included) crack jokes about being crazy or insane, poke fun at each other because our lives are stressful and sometimes so difficult to deal with that it's either make what to some may seem an insensitive joke or have a breakdown.  And if whenever I get my diagnosis, I do plan on becoming a psychologist.  I've gotten into why in the past and will most likely explain it again in the future, but for now, that's not the point.  The point is this:  even though raising awareness about physical invisible illnesses is very important, so is raising awareness of mental invisible illnesses.  Because the truth is, if you have one, there is no shame in it, but sadly, it's understandable why many people with one stay silent on the subject.  And for those who don't have one?  They need to learn about these illnesses and what they REALLY are instead of hollywood's or cable's portrayals of them.  If everyone judged, insulted, or shunned everyone else that was different from them, this world would be nothing but a bunch of prejudicial hermits.  And at this rate, it looks like we're headed in that direction out of nothing more than sheer ignorance.

Mythbusting--Pt 2

     It's a bit early in the day (okay, 4 in the afternoon, but still.. I usually blog later at night) to blog, but since this idea started rattling in my head yesterday morning, I have a feeling my blogs will be written a bit earlier until their complete.  Instead of one very long blog (which most won't read all the way through), I decided last night to break it down into several smaller blogs.  And once again, thank you, Chris, for the idea.  I also want to thank C (the amazing, brave young woman who also helped me realize that spreading awareness is far more effective than anything else; I use only her first initial because of her age) and Kristin, who shared last night's blog with her friends because she found it to be a simple way to explain to them what makes us the same, but also what makes us different.  I'm sure I'll be adding more names in the future.  So here goes some further mythbusting to educate the uninformed and ignorant.
       Last night, I explained how everything happens for a reason, that while not it is not our right to be healthy, it IS our right to be happy (and also our choice to be), and why some of us with invisible illnesses work, work part time, or don't work at all.  I dispelled the myth that we're lazy, attention-seeking drug addicts.  Today?  I'll continue on the "we're just lazy and/or drug addicted" themes, except apply it to goals and a sense of accomplishment.
        Almost everyone has a set of goals in life.  Long term goals, short term goals, even daily goals.  For a lot of people a sense of accomplishment means finally saving up enough money to buy their dream car, getting that job they always wanted (after the proper education, training, etc.), getting married, having kids, a successful career, finally getting that promotion from work, finishing that extensive project list (repaint the house, build a new deck, landscape..remodel the house... you get the idea).  Big stuff.  Then there's the daily things:  make it to work on time, manage to make it to the gym like you've been promising yourself for months, go through the entire day without smearing your makeup, wearing food or coffee, all of those stupid little things those who don't live with invisible diseases take for granted. 
    Us?  We have a lot of the same goals.  They just tend to get put on hold, modified, or changed.  We also add to the list things like "find a diagnosis," "find a treatment that actually helps," "have at least a few hours that the pain is either gone or low enough to get anything done," "actually be able to get a full night's sleep," and things of that nature.  Our sense of accomplishment ranges from the same things the rest of the "normal" population deal with to being able to do things like being able to clean the house, do the laundry, prepare and cook dinner, be able to go shopping.  It doesn't sound like much to most people, but sometimes even those simple little things become seemingly impossible for us to do some days.  So for those of you who have an "invisibly ill" friend or family member, next time you go over to their house or apartment and notice that it's a little dusty, maybe a little messy, looks like it could be vacuumed, don't judge them as being slobs, pigs, or lazy whether they work or not (especially if they don't work), try to put yourself in their shoes.  Think about what it would be like to be in too much pain to do such a simple chore as picking up a dust rag or swiffer and walk around the house to dust it, or to vacuum the floor up, even when you have all day to do it.  And even though they might be in the kitchen making tea or a pot of coffee, acting like everything is okay, think about what just went through your head as you saw the dust bunnies and the clutter.  Wouldn't you pretend everything is fine?  Think about what that person's other friends and family members said when their illness first started and that person first started talking about it.  All the doctors, the medications, all the times they were told they looked fine, how many times they may have been told they WERE fine before they were finally diagnosed (if they were diagnosed), and how many people walked away from them because they got tired of what they thought was whining and attention seeking.  Wouldn't you automatically act like you were fine whenever someone came over for a visit even if you were far from it after going through all of that?  Just think about it before you judge someone next time you walk into their house and it doesn't look like it belongs in the next issue of "Better Homes and Gardens." 
      

Rights and Reasons

    In many ways, I owe this post to a recent friend, Chris.  She made a comment on my last blog that, like most of us with chronic illnesses, I deserve the right to be as healthy as I can and she hopes I get there.  It's not uncommon for others to post comments on the sites I post my blogs on instead of this site instead of posting comments directly on here, but when I do get a comment on here, I receive an email notification letting me know who commented and what the comment was.  Of course it was first thing in the morning and my caffeine deprived brain misread the comment as "you deserve the right to be healthy."  It got me thinking.  Last night I shared a post of a brave young girl's page whose intention is to spread awareness of juvenile arthritis and myositis as well as other autoimmune disorders.  She may not have many followers yet, but her message "always positive" is also spread along with hundreds of other young children who share the same disease she's fighting.  Her mother thanked me for sharing her page, in the hopes of getting more people to like the page and spread awareness of these horrible, painful, often invisible diseases.  There wasn't anything to thank, if I was her age, I would hope someone would do the same for me if I was that brave as to share my story and try to spread awareness. 
         What it really comes down to is this:  no, we don't all have the right to be healthy.  What we do have the right to, however, is to be happy.  Being happy is a choice we have to make, no matter what life's circumstances bring us.  Another reality is that everything happens for a reason.  Since letting go of (most) of my anger of becoming sick and reaching out for support and knowledge from others about what I'm going through, I've noticed a common thread among those I seem to have bonded with:  we're very loud and outspoken.  We also tend to have a pretty sick, twisted, demented sense of humor.  But we all have a few common goals in common:  we want to spread awareness of these illnesses to dispel ignorance, prejudices, and stereotypes that come along with invisible illnesses.  Whether it's fibromyalgia, chronic fatigue syndrome (any illness that is not autoimmune related, hard to scientifically diagnose with a specific set of labs, but rather the exclusion of labs) or any of the hundreds of autoimmune disorders, on the outside, we all look relatively healthy.  Some diseases cause us to become seriously overweight (either from the disease itself or from the medication treatments), while others cause us to become under weight.  Sometimes our joints may look just the slightest bit "off" if you've known the person for years and you notice the change, but what you don't see is the pain that they're in. 
       We don't work because we're lazy, because it's easier to collect government money and benefits or because it's just easier to let our families support us while we lie in bed crying why me, poor me, I'm such a loser, etc.  Most of us don't work because we CAN'T.  It's not a choice we have.  That choice has been taken away from us.  Employers tend to hire people who show up when scheduled and schedule employees who can work when needed.  They generally frown upon the "I'm not sure if I can work next Wednesday... the forecast is calling for rain and a 25 degree drop in temperature and usually that causes my body to react pretty violently..."   Some of us CAN work.  Some even full time.  Some are lucky enough to have a diagnosis, the right combination of treatments, and the right job that allows them to work full time with little interference.  Some have to collect disability but can only handle working about 20 hours a week.  So to generalize someone with a disease based on a few you've heard of is wrong.  Having said that, here's myth #2:  just because someone has a diagnosis means a doctor can either cure them or give them a treatment regimen to get them healthy enough to work.  No.  A diagnosis is a starting point.  Sometimes the best thing a doctor can do with a diagnosis is to simply make that person comfortable until science catches up.  I can go on and on about all the myths, prejudices and stereotypes that ignorant healthy people come up with because it's easier than learning the truth (and let's face it, who wants to look up this stuff when you can watch porn, read up on the latest celeb gossip, or funny YouTube videos, right?)
        But some of us live with this every day.  And while sometimes it sounds like whining, it sounds like a pity party, a cry for attention, it sounds like a temper tantrum (although sometimes it is, especially when it comes to dealing with the medical field), there's a much bigger picture here:  it's about raising awareness.  It's about raising awareness of these invisible diseases, these incurable, but somewhat treatable diseases, these painful diseases.  It's about raising awareness that no one is immune to them--young old, short, tall, black, white, purple, blue.  And it's about raising awareness about what it's like to live with them.  As of right now?  I've been misdiagnosed, and under diagnosed.  And even when I finally get my diagnosis (whether it takes weeks or years), if I'm ever able to return to work, no matter what happens, I know this--I will never stop my mission to educate the ignorant.  I got sick for a reason.  I'm loud, I'm outspoken, yes, my mouth tends to get me in trouble, but it can do some good-- to draw attention to something that doesn't receive enough of it.  And I know I'm not alone in it.

Definition of Insanity--Revisited

      I mentioned last night that in one of my rare but many lightbulb moments I realized a pattern to these flares.  Whatever "this" is, it didn't start in December, it started years ago.  When, I'm not exactly sure, but since I only have about 6 or 7 years of prescription records and about half my labs from maybe the past 5 years, I might be able to piece it together.  Emphasis on might.  Of course it would be easier if I could eliminate all the positive Lyme Disease tests, 5th's Disease (not sure if I have the test, but I know the date), Epstein Barr Virus, sinus infections and the resulting surgery... But I know there is a pattern.  Some of the symptoms vary (like this time my hair isn't falling out in chunks, I'm not entirely sure how I react in the sun because I've been pretty much a hermit), but overall, the symptoms are the same:  my joints swell, the pain is constant, my sleeping is off by a mile, my migraines return, anomalies show up in my labs (another connection I made), some new drug or another is shoved down my throat and the inevitable steroids.  Damned steroids.  Prednisone.  Medrol.  And what I stupidly never even thought about over the past year when my rheumatologist's nurse called me back again today (I'll get into that fun convo in a bit) mentioned that it had been almost 3 years since I was on steroids--CORTISONE--steroids!! except I was getting it injected for a knee problem (even though I was flaring, having a swollen, excruciatingly painful knee that kept collapsing kind of puts everything else out of your mind).
           But I called the dr back this morning because I still didn't receive a copy of my labs (which I was told were mailed last Wednesday) and his nurse (the really nice one who sadly wasn't there for his tirade during my appointment) called me back to let me know it went out this morning and he's recommending that I go on Voltaren--another anti-inflammatory since I flat out refused prednisone.  I can understand not going through my entire chart since I've been a patient of his for 9 years, but there hasn't been much he hasn't tried me on--Voltaren included on that list.  So I once again said no.  And I resisted the urge to really tell this poor nurse what was really on my mind.  It's not her fault her boss is a moron, so it's not right to yell at her for something her boss did.  I did tell her to leave a message for the doctor that I do have an appointment with my ID specialist at the end of the month, I will bring a copy of his labs with me, and see what he wants to do.  I don't want to be put on any more medications than I'm already on right now.  And I left it at that.  When I hung up the phone, I found myself curled up, going over the conversation I wish I had, but with the arrogant ass who put me in this position.  Of course 90% of this conversation was laced with just about every profanity and insult you can imagine (and probably can't imagine, given my creativity level) and I realized that I was still living the definition of insanity--doing the same thing over and over, expecting a different outcome.
       For years I've had almost the same symptoms appear for weeks to months at a time.  Each time, the same anomalies appear in my blood work, and my rheumatologist puts me on steroids and anti-inflammatories and sends me on my merry little way, and I eventually improve to my normal, but achy, self.  And each time it returns, it gets just a little bit worse, requires a little stronger dose of medication, and sticks around for a little longer.  And I just go with it.  Why?  Because he's a doctor.  A specialist, no less.  So he should know better, right?  Until now.  I want to know the why before this goes away again, before I'm put on more drugs, before it comes back worse.  Next time it might not just leave me stuck in bed 75% of the time, in pain, with nothing helping, joints so swollen I barely recognize my own body, but put me in a wheelchair, or a hospital.  Or worse.  That arrogant ass actually blew up at me during my appointment because I went and saw another specialist.  And that specialist had a difference of opinion.  The ID specialist put me on a powerful pain medication and an anti-rheumatic drug and drew over 14 vials of blood--testing basic body chemistry and all forms of tick born diseases (which were all negative, so on to step 2).  My rheumatologist would have had those test results while I was there if his technician stayed on hold for another 10 seconds instead of taking a call from her daughter in order to plan Easter dinner (because that's always more important than patients, right?).  Then went on a tirade about my new specialist and how he doesn't understand what the hell he's thinking putting me on this medication, without the lab results, he doesn't even know what to order (like it's a big deal to order the same panel 2 weeks later, right?  What's another 8 vials after 14?) and on and on and on he ranted.  Turns out that the rheumatologist's labs showed an INCREASE in my sed rate and crp levels (a bad thing...) and *poof* suddenly he's in agreement with the ID specialist.  Although I'm also pretty sure that he did a bit of research on the guy after seeing me and discovered that my newest specialist is also one of the best in the state... and for some pretty good reasons.  Not a good idea to bash someone like that if you don't want to tank your own career. 
       I know diseases like whatever is obviously wrong with me can be very difficult to diagnose (I'm not even going to worry about or think about the treatment side.... YET), but sometimes I just feel like I'm some lab rat running in a wheel going over the same obstacle over and over and over... Now to hope that my rheumatologist gets pissed enough at my latest "um, no!" to call me himself this time... :D

A Menopausal Mother Nature

     Before I go on about the insane weather lately, I remembered something yesterday my soon to be fired rheumatologist said when I was first diagnosed with fibromyalgia (back before he turned into the dismissive, arrogant, ass he's turned into):  if it hurts, don't eat it.  Then, as in now, there's hundreds of "medical" articles, blogs, pages, and ads as to what foods make the pain associated with fibromyalgia (and other diseases) worse.  If you read some of them, you'd think it was a one-size-fits-all diet guide or something.  Truth is, it's not.  Even for the healthy.  All of us have certain foods that make us feel like crap, no matter how much we may like them.  I can't tolerate Equal or Sweet-n-Low because I'm just begging for a killer headache.  Fast food makes me feel bloated, sick, and just overall like hell.  I can eat regular pasta and white bread, but in very small amounts, or I do notice it affects several systems in my body and yes, it does increase my pain level.  His approach was very common sense.  None of us are the same.  We may have been diagnosed with the same illness, but just like with everything else, we don't all react the same.  But I just had to throw that out there before I forgot.  It wasn't enough for a full blog, so what the hell.  There it is.
        This past October, we got over a foot of snow.  It wasn't a good sign for winter.  Yet, this winter was a disappointment.  We had a few pretty bitter cold spells, a lot of rain, very little snow, but overall, it wasn't much of a winter.  March came in like a lamb and out like a lion.  Last week I was wearing layers and fleece as the daytime temps never made it out of the 40s and the nighttime temps dropped below freezing.  Yesterday was no exception.  Today?  It was almost 90 degrees!  Yep.  90.  And tomorrow in the low 70s, followed by the rest of the week in the upper 60s to low 70s.  And still no rain forecasted until at least Saturday.  The ground is still pretty saturated, but because the humidity has been so incredibly low and it's been so long since we've gotten such a good soaking rain, there's a high brush/forest fire risk.  Last weekend there were 2 in my area, along with several in NY, PA, and south NJ.  The surface is just that dry. 
      I'm still in incredible pain.  Now that the temps are dropping off, the humidity is climbing.  I don't deal with hot weather too well.  Humidity causes my joints to swell and the heat causes wicked headaches, regardless of how much water I drink.  At least it wasn't humid today, so all I had was the headache.  But now the swelling and overall pain is increasing as the temps are dropping for the night. 
       I've been trying to control what I can in terms of pain since this latest flare up started.  And yes, I said "latest."  Being the dumbass that I am sometimes, I threw out all my medical journals/trackers in during one of my cleaning sprees.  But when I was laying in bed yesterday during one of those dreaded high pain, but high energy days (which means all the energy to get what I want done, but no chance in hell it actually will get done) I realized that this isn't the first time this has happened.  It's been happening for years.  The swelling, the joint pain, hair loss, intensity in migraines, elevated crp and sed rates, the full gamut. Except they never really lasted that long.  My rheumatologist would see the lab results, put me on prednisone, and it would ease it.  But it always returned.  And every time it returned, it would get a bit worse and last a bit longer.  The last few years I've had several cortisone injections in my knee (dumbass... STEROIDS!!!), so the flares would once again ease.  And now it's back with a vengeance.  What does my rheumy want to do?  12 days on prednisone. And I refuse. Except I never made the connection and sought out on a different path: new doctor, new tests, new medication, dietary changes, and even if I can't workout or finish a workout, I at least stretch twice a day.  I try to control as much stress as I can, or at least how I let stressors affect me.  But there isn't a damn thing I can do about the weather. 
        I can't exactly blame Mother Nature for being pissed.  There's parts of Her planet we're bombing into dust, parts we're shipping our trash to because we're running out of room in America, buying crap we don't need, obsessed with oversized, gas guzzling, oil sucking SUVs, designing disposable technology like cell phones, computers, tablets, e-readers, all designed to be outdated in the span of about 2 years and 90% of that crap ends up in landfills, toxic elements and all.  Stripping away millions of acres of land for hundreds of gallons of oil (tarsanding) so we can drive 3 blocks to the grocery store.. plastic water bottles, disposable diapers, feminine products, beauty products, fashionable clothing that's only "in" for about 2 weeks, and lets not forget all that shiny must have CRAP that we go out and buy because some celebrity or another was seen using it at the grocery store, sitting at an overpriced restaurant, cafe, or on the red carpet.... Hell, I'd be pissed too.  Am I an environmentalist?  Yes. I do as much as I can when I can. Do I go around lecturing people in the grocery store if they use plastic bags instead of reusable ones or throw red paint on people wearing fur?  No. It's called free will.   Do I like to look nice, have nice things?  Yes, but when I can, I prefer second-hand shops or clearance racks than paying full price for things (as far as clothes go, I do have a good sized wardrobe, mostly because of my constantly fluctuating weight--I have sizes ranging from 4-20 if that gives you a clue as to how much it fluctuates).  Do I have a MacBook and an iPhone?  Yep, but it's an older MacBook that still works, so I have no intention of upgrading anytime soon.  I back up my computer on a regular basis in case it does commit suicide and the iPhone I bought because I needed a new cell phone, so until it commits suicide or gets stolen, it too, is around for the long haul. It's all in the little things and I'm sure She appreciates it on some level.
        But I still think it would be nice if she cut some of us who are at her complete mercy some slack.  Experiencing all 4 seasons during the course of 1 week is just way too painful and hard on a body that's already too taxed, so please, Mother Nature, I won't mind dealing with the "rain pain" since we so desperately need it at the moment, but can you please find some Estroven or something to curb this menopause or some Valium to tone down this temper tantrum at least for a little while?  I would be oh so very grateful....

Another Lightbulb Experience

     Yes, ladies and gentlemen, 2 blogs in 2 days.  But I couldn't resist posting this tonight.  Mostly because even though the realization that hit me tonight will still exist somewhere in my fatigued, fogged, and medically fogged brain, the importance of it (or the circumstances around it) might get lost somewhere by then.  Gotta love pain, fatigue, and Topamax.  I knew what I was getting myself into when I was put back on Topamax and I'm very grateful that I started titrating up to my target dose not only while I was on medical leave, but while I have plenty of time before the fall semester starts so that the side effects ease.  You see, the biggest side effect is memory and cognitive impairment.  I forget what I'm saying mid-sentence, forget why I was going to call or text someone in the few seconds it takes to unlock my phone, forget if I took my pills (except my morning and evening pills, since they're taken at the same time every morning/evening with exception to 1 in the morning depending on whether or not I have to drive).  It's the ones I take "as needed" or the 4 times a day pills.  I've actually had to start making a note so that I don't overdose by accident until I've reached my target dose and adjusted to in, in which the side effects go away. 
     And already I've gotten off topic.  Since starting on 2 new medications--one is an anti-rheumatic drug that usually takes anywhere from 4-6 weeks to notice a difference, but up to 6 months to see the full effect, while the other is a very powerful pain medication taken twice a day.  For the first few days on the pain medication I had something I hadn't seen in several years---absolutely no pain whatsoever.  I'm not entirely sure it was because the medication was actually working, or if it just threw me so far off the planet (but not sleepy or drowsy in any way) that I just didn't care about the pain.  Either way, I wasn't going to complain.  Then starting around Good Friday, the pain not only started to increase, it never improved.  It continued to get worse.  It was so bad, in fact, that I couldn't even go to Easter dinner with my family.  And it's still continued to worsen over the course of the week.  My joints are still pretty swollen and very painful, but I've noticed that my hands are slowly starting to uncurl themselves (most likely from the anti-rheumatic drug).  Then today a friend of mine who also deals with painful chronic illness posted something I've found myself saying more times than I can count:  "I'm sick and tired of being sick and tired."  Then that little light bulb went off as we were talking.
      It's easy to judge someone who looks normal, but doesn't work, cancels plans at the last minute, doesn't work, and spends most of their time in bed.  It's easy to say "it's just mind over matter, so think positive and you'll start feeling better," "but you don't look sick, so you must be just lazy," "try getting up and getting some exercise,"  and anything/everything along those lines.  My mother even made some kind of comment this evening about how much time I've been spending in bed lately.  Like I enjoy this or something.  That was what flipped the switch to even get the electricity running to the lightbulb before it finally turned on.
      Everyone who is living with a chronic illness (even the most painful ones) deals with it differently.  Yes, attitude does pay at least a small role in it.  Having a positive attitude is definitely more productive than always walking around with a negative one.  Except it's not always simple to keep a positive attitude.  Over the last few years, I admit I've become a bit cynical for a lot of reasons, including my health.  I also try to see the upside or silver lining in everything, no matter how small and seemingly meaningless it may be.  Finding that tiny sliver is still better than finding nothing at all.  Naturally that's excessively difficult after you've spent almost a week in incredible pain, hardly any relief, and all it does seems to get worse.  It becomes difficult to get and stay comfortable (even with a Tempur-Pedic mattress), sleeping is hit or miss, nothing seems to help it, and your mood just continues to go downhill.  Before you realize it, you find yourself more ill tempered than normal, less tolerant, more cynical, and bitchy is a bit of an understatement.  After years of dealing with this, I've gotten better at catching this before things really blow up.  I know this isn't the real me.  It's a combination of fatigue, unrelenting pain, a side effect of some pain medications, and the stress that always comes along with it. So I try to isolate myself in my room to minimize the outbursts, since most of the time, the targets of my anger really don't deserve it.  At least not at the level I dish out.
        Everyone deals with this in their own way.  Aside from my as yet undiagnosed illness (which may or may not be a flare up of, or just the illness itself), the weather has been a be wonky lately.  I've mentioned in previous blogs how the weather affects my pain levels.  The same holds true for my mother, except she deals with her pain a little bit different than I do.  I try to rest, but get small things done when I get little bursts of energy here and there, but always conscious that I don't overdo it and pay for it knowing I'm already in pain, so if I overdo it, it's only going to make the pain worse.  My mother spent several years on almost a dozen blood pressure medications to bring her dangerously high blood pressure (which caused her kidneys to fail) under control.  At the time, she wasn't on dialysis, but the medication alone left her bedridden 99% of the time because the side effects made her incredibly dizzy and weak.  Doing things we all take for granted like being able to get up and go to the bathroom or take a shower took incredible amounts of energy from her, not to mention having to use furniture and walls to help keep her from falling over.  When she did start dialysis, the first few months made it that much worse.  Now she's only on 2 or 3 bp meds, but at very low doses and will most likely be taken off those by either the end of this year or next since the dialysis is causing just the opposite problem--her bp is dropping dangerously low.  So on days when she has dialysis, it's not uncommon that very little gets done.  The other 4 days, however, regardless of how bad the pain she's suffering, she pushes herself.  She lost years of her life confined to her bed as the result of being sick and dealing with the side effects of medication.  So she just pushes through the excruciating pain to accomplish what she set out to do that day, regardless of the effects of her efforts.  In many ways, I can't say I blame her.  Except during those high pain days, by the time late afternoon/early evening come around, she's about to rip the head off or beat the hell out of the next thing that pisses her off.  (Kind of like the way I feel after spending days of dealing with pain).  But that's just the way she deals with it.  Sucking up the pain and getting angry as it gets worse because she pushed herself too far in her mind is still far better than the days and nights she spent either in bed or on the couch barely able to do anything for herself.  And as painful and hurtful as some of the things she says and does can be, I can't help but be proud at her at the same time.  Life didn't go according to the way she planned it, but it's her stubbornness that keeps her going and very little stands in her way most of the time now. 
      So before you go off and judge someone by the way they look or compare them to someone else who has the same or similar illness, keep this in mind:  not only are there varying degrees of these illnesses, there are also varying degrees as to how those who have invisible and chronic diseases deal with them.  Every one of us is different and so are our reactions.  For the most part, we do what we feel is best for ourselves, whether it's mentally, emotionally, or physically.

Friday the 13th

       Many people dread and fear Friday the 13th.  They swear it's an unlucky and cursed day.  I typically find the opposite to be true for me.  Granted, it's not so lucky that I go out, buy a lottery ticket and *bam* instant millionaire kind of lucky, but more like the kind of day where even Murphy himself doesn't seem to make an appearance.  Except for yesterday. 
     I didn't even realize until later yesterday morning it was even Friday the 13th; I had more pressing things on my mind.  Shortly before I fell asleep Thursday night, I noticed the furnace (which is just on the other side of my bedroom wall in its own little closet/room) was making an odd noise.  It sounded like we were running low on oil, so I blew it off and dozed off, but a tiny little voice in the back of my mind piped up seconds before I fell asleep reminding me that we had an oil delivery not too long ago, with exception of the past week it has been pretty warm, so we shouldn't be that low yet, but I dismissed it.  I knew I had to get up early the next morning, but had no idea how early since my nephew was staying over.  The latest would be my usual 8am to take my medication and get ready to pick my mom up.  If he got up earlier, I'd be up earlier; it was just that simple.  Not to mention it was going to be a bit of a busy morning:  I had to put gas in my car, he was looking forward to his iced decaf coffee from Dunkin Donuts, I had to stop at the pharmacy for children's cold medicine and cough drops, make a deposit at the bank, and mom & I promised the fuzzlemutt a trip to her favorite place--Petsmart. 
      At 4:11 Friday morning, I was jolted out of bed by what sounded like an explosion.  I didn't sleep too well and it took me a few seconds to realize what I had heard:  the furnace.  It was running, but something was seriously off about it.  Next I heard the shower upstairs running, which is normal since mom goes in that early on her dialysis days, but something was still off.  Then it hit me.  I was hearing what sounded like an angry waterfall coming from the other side of my bedroom wall--coming from the furnace.  I ran out of bed, jumped over the doggie gate keeping her out of my office to see water pouring through the slats of the door hiding the furnace.  Definitely not a good sign.  I have no idea I could run up my basement stairs as fast as I did, but I hit the emergency shut off switch on my way up to warn my mom to either get out of the shower, or not to get in the shower because the furnace had just blown up and we had no hot water.  I was praying for the latter because our well water is about 34 degrees and at 4am, that's one helluva shock.  I had a vision of having to find her somewhere in the backyard because the minute the cold water hit her, she'd have jumped out the tiny bathroom window in shock.  What I didn't realize was that even though I had shut the furnace down was that there was still water pouring all over the place downstairs, but my dad rushed down to see what happened.
      I don't deal with that beast.  At all.  Very few things scare me, but when it comes to the furnace, I'm the kind of person who, when I have to, tries to push the reset button using an unwound coat hanger while hiding around the corner of a wall in the unlikely event it explodes in my face or something.  It's completely irrational, but there it is.  Turns out it was the water pressure relief valve (or something like that) that blew.  A cheap part, 10 minute fix, but definitely not a way to start the day.  It also meant that he needed the card I was supposed to use to fill my gas tank and make the deposit.  2 things off my list for the day.
         Since there wasn't a chance in hell I was going to fall back to sleep after that rude awakening, I poured some coffee and took 1/2 a Xanax to try to calm down.  Being afraid of the furnace that's on the other side of my bedroom wall blowing up and in a sense having it actually happen (at 4am, no less) would set anyone on edge.  I finished most of my cup and when I went to fill it back up, naturally the pot was empty.  It's a new coffee maker and I have no clue how to use it.  It's one of those higher tech ass backwards deals and I was not about to screw with it at 5 in the morning, so I saw my dad had left 1/2 a cup behind and just added it to mine.  Toss in the microwave for 30 seconds and presto! a full hot cup of coffee!  Except for the one thing I didn't think about:  he adds a flavorless glucosamine/chondroitin powder to his coffee in the morning for his arthritis.  And it's derived from shellfish--something I'm deathly allergic to.  Dumbass.  Lucky for me, it was his 3rd or 4th cup, so there were only traces left, which meant instead of stabbing myself with my epi pen, dragging my nephew out of bed and rushing to the ER, I could pop a few benadryl and hope that it would be enough.  If I felt any signs of anaphylaxis, I was screwed.  I only had an annoying rash for a few hours.  Emphasis on annoying. 
      I just laid on the couch trying to relax when the boy woke up, promptly stole the remote and turned on his cartoons.  Even though he'd slept through the chaos that morning, somehow he seemed to know it had been a pretty tough morning. But it was still far from over... it was barely 8am.  Fuzzlemutt decided she had to go out, so I asked him if he could please let her out.  I'm not quite sure what/how it happened, but he forgot she's not like my last dog who was trained to stay in our yard.  This one has to be let out on the runner/leash every time or she just takes off.  Unfortunately, she's part husky, which means she can't find her way home.  He opened the door and just let her out, completely forgetting to clip the runner to her.  As he's apologizing and trying not to cry, I just asked him to run down to my room and grab my car keys, it's no big deal, but he has to hurry.  Gracie's fast and smart, but also very, very stupid.  We can't catch her by running after her no matter how healthy we are even if we tried, but all I have to do is get in my car and drive up the street.  She never goes more than 4 houses up, but the second she hears my car, she comes running to me.  Every time.  If I happen to pass the yard she's in, she runs to the end of their driveway and waits for me to drive back.  It's like a game to her or something, but one I could've done without yesterday. 
        Then came the time to actually leave.  Have you ever tried to put an excited puppy and an 8 year old in the back seat of a Beetle?  Have fun with that one, because I'll never do it again if I can avoid it.  Not to mention my dog is 3 breeds of dogs known for their barking.  And she barks.  At everything.  The second we got out of the car at Petsmart she started barking and pretty much barked her way through the entire store.  It did make it easy for my mom and my nephew to find us, though.  Only twice did she stop:  once was in the aisle with all the bones and rawhide chews.... there were so many different choices, sizes, colors, flavors, she didn't know what to chose, or what to make of it.  I picked up a bag of her favorite small rawhide sticks and one of those big rawhide bones that have bacon wrapped throughout it (I wish I could've taken a picture of the look on her face.. the second I picked it up she sat down instantly and just gave me this look like "really?  for me? please?") and again when we reached an end cap that had a huge display of BoBo dog toys (those wiener dog toys that come in all sizes, colors, and fabrics with the squeakers in them?)  She absolutely loves those.  She looked like she had just died and went to heaven.  There were Bobos in every size and color, so I picked up 2 little ones... it takes her 5 minutes to tear apart the big ones.  By the time I finally got home nothing was going to get me out of the house.  You could find me either in bed or in the recliner in the living room.  It was a pretty high pain day, so all the extra stress didn't help anything. 
            Today, I think I'm just going to relax and read.  If I get a bit of energy here and there, I might do some small cleaning jobs, but nothing major.  And on that note, I hear the coffee pot beeping, so that means it's done brewing.  (no, I didn't make it... forgot to ask mom how to use the damn thing.  I'll remember to ask her eventually)

Master? HA! I got buried today!

      This morning started out like most cold, damp, dreary mornings.  I pretty much had to throw myself out of bed to get moving, prayed that there was at least a half a cup of coffee left (since caffeine has now become my dad's newest vice instead of smoking), and instead of working out because I was in too much pain, just going through a simple set of stretches before I left to pick up my mom.  Of course there were the few "what the hell?" moments.  Like finding out my income tax return STILL hasn't been deposited.  (The IRS website initially gave me a date of April 5th, which came and went, then said the 10th, which also came and went, but now simply shows my return as "processing" the bastards.) And dealing with the worlds most pathetic mutt as I'm trying not to lose what's left of my mind while trying to find my car keys.  At first I thought about calling my dad, since he did use the car on Easter, which meant he'd of been the last to use them, but wait.. it's Wednesday, not Monday--d'oh!  Finally I found them and kept trying to get out the door as the mutt was constantly underfoot, looking from the door to my car, to the basket where her harness and leash are, to me, and back again with this "please take me, I wanna go" pout on her face.  She must've overheard the conversation mom and I had about going to Petsmart yesterday.  Initially, after I picked her up from dialysis, we were going to go to Yankee Candle (since I had 3 buy 1 get 1 free coupons that expire this week) to replace the Christmas scented candles upstairs, go to Petsmart for bird and dog treats, then go grocery shopping (groan).  I suggested we put off the Petsmart trip until Friday so that we could bring the mutt with us.  It is one of her favorite places, after all.  I don't think the mutt heard that little change in plans, though.
        So my mom got her candles, I got my car freshners, a box of tea lights and a medium jar candle, and it was off to the grocery store (double groan).  It's not that I really hate grocery shopping, I just prefer being given a list and sent on my own.  I go in, I leave my phone in the car to avoid the inevitable dozen phone calls "oh, by the way, I forgot to add" (which always happen when I'm on the opposite side of the store, naturally), I pay, I leave, and it's done.  Taking my mom, however, makes it a process.  Sure she has her list.  She gets everything on the list, unless the store is out of stock of an item, but then there's always the stuff that's either on sale that we can always use and the stuff she forgot to put on the list.  And we can't forget reading the labels of 99% of the stuff she buys, even if it's the same product we've been buying for decades.  Granted, some things now have iodine added to them, but that's generally meal replacement/supplement items.  It's that whole fear of nuclear war/nuclear fallout thing, except both of us are highly allergic to iodine, so if either scenario does happen, we're definitely screwed.  Then there's my favorite part--going up and down EVERY aisle in the store.  EVERY TIME!  Doesn't matter if that aisle has nothing on the list.  It might have something she forgot to put on the list, or something we can always use that's on sale that wasn't in the circular.  I think by aisle 12, with an overflowing cart, while she was comparing cupcake wrappers, I was fighting the urge to just meltdown and cry.  It was a tossup between being in incredible pain and the thought of having to bring a carload of groceries down the stairs into the house and put them all away.  Normally, if it's more than 2 hours late, I don't bother to take the latest pain medication in my arsenal since it's a twice daily thing.  Today it was more like 4 hours and I just didn't give a damn. 
         But I can say I learned a few things grocery shopping with mom.  The first is I can't deny where I get some of my ideas and attitude from.  As we were in the last aisle, I waited towards the end while my mom went to read the labels and pick up some shredded cheese and pizza dough (or something like that, by that point, I have no idea, I was just trying to keep things from hitting the floor) and a middle school girl caught my attention when she yelled out "shut the front door!" for no particular reason.  Her younger brother replied "shut the back door!"  I doubt neither one had any clue what they were talking about, but that's probably a good thing.  What I did notice, though, was that this girl, 12 at the absolute most, had on skin tight, butt lifting, slow slung flared jeans with a long sleeve t-shirt tied at the back in a knot to expose a bit of her lower back.  Her mother, dressed in super tight jeans and an LBI sweatshirt and baseball cap (like any respectable spa dwelling NJ style soccer mom) almost bumped into my cart and made an offhand remark about how "wow, someone's really grocery shopping today!"  Well, yeah.  No one in my house hasn't actually done any real grocery shopping in about 3 months except the pick up what we need and one or two extra kinda deals.  I just blew her off because mom finally made her way back and we headed to the checkout line.  Mom was putting the stuff on the belt and I was filling up the reusable grocery bags like any good environmentalist does while trying to keep up with a cashier who seemed determined to bury me in a cart full of groceries.  As the bags began to fill up, I had to set a few on the floor until the cart was empty.  No big deal, really.  Until I heard "Really?  Are you freaking serious?"  And a few other things along that line.  I glanced up from my frantic bagging to see none other than the soccer mom face to face with my mother.  Uh oh.  I had no clue what was going on, but whatever it was, the soccer mom was obviously in line behind us and just my mom's body language alone let me know my mom was more than just a bit pissed.  I had several heavy bags of groceries and a shopping cart between my mother and me and there wasn't enough room to go around them should this now psycho soccer mom really start trouble. Then I realized 2 very important things, well 3:  my mom has a bit of a temper (with a mouth to match..sound familiar?), especially when she isn't feeling great and I knew she wasn't given today's weather.  she also never backs down. and not a single item of produce had been rung up yet.  All I could do was hope like hell the psycho soccer mom stopped doing whatever she was doing so we could just get out of there without incident.  It turns out that even though the woman saw we still had a lot of groceries left in the cart to ring up, she started putting her groceries on the belt.  All my mom did was keep pushing her groceries back so that we could finish up our order and get out of there and the woman got pissed.  Okay, after the third time my mother pushed the woman's groceries back asking her "what, are you fucking blind?" probably didn't help matters any.  But still. 
       When we got to the car I asked mom what happened and she explained to me.  I started laughing and told her about my concern because not only did I not have a direct route to get to her, the cart still had all the fresh produce we were going to buy in it, leaving her too well armed.  She stopped and looked at me for a second before she calmly replied: "Why would I risk bruising perfectly good produce before I paid for it?  I had an entire cart full of canned goods!"  Now THAT would have been interesting!

April Showers

    Originally, I was going to go on one of my opinionated rants (which, being me, my opinions are pretty strong so they could get pretty lengthy) about television--especially commercials.  The thought occurred to me last night when I was writing about the family Easter I missed on Sunday, but a different and more fitting thought struck me as I found myself pouring a bowl of cereal for dinner and taking my medications earlier than usual about a half hour ago because I feel like hell. And as I opened my blog page, I noticed a pattern.
      I finally reached my newest specialist yesterday after reaching his technician last week and finding out that yes, my test results were in, a copy would be mailed to me because my fax machine isn't working, and yes, he would call me the following day.  As of Saturday, I received neither.  I only half expected a call considering she did mention he was called to the hospital to take care of a patient.  When I spoke to his tech yesterday, she assured me that I would hear back from him with "mostly good news," but he just hadn't had the chance to review all of the results then mail me a copy.  With 14 vials drawn, I'd imagine it would take awhile to read through it all. I know he ran dozens of body chemistry tests including basic panels (cbc, diff, sed rate, liver, kidney), but he also ran any and all tick born diseases because of the area I live in and the sharp increase of the diseases in the past few years.  Being someone who has had 7 or 8 confirmed cases of Lyme Disease, it was a good place to start even if I am obsessed with the best bug spray there is when I'm doing anything other than walking out to my car and back.  The good news?  All of those tests came back negative.  The Lyme panels all came back with levels that showed a previous infection(s), but were well within acceptable ranges.  He didn't mention anything else on the test, but will discuss them further during my next appointment and decide what to test for next.  Aside from pain, which isn't something a doctor can physically see, there are several physical symptoms that can't be ignored, so he, like my neurologist, knows something is going on.  He also wants me to stay on the medications he put me on--one being a drug commonly used to treat painful, damaging autoimmune disorders.  The other is just a very powerful narcotic pain medication that I always take at night, but some days I'm forced to skip if I have to put the dose off for more than 2 hours if there are things that have to get done.  The first takes at least 4-6 weeks to start working, but I'm already noticing very slight improvements.  The biggest improvements (even though small) are in my feet.  The swelling is still pretty extreme most days, but it's slowly going down and I'm noticing, especially in my right foot, that they don't hurt as much.  I also noticed that I'm not doing the "zombie shuffle" as often because of the extreme pain of putting weight on them the way that I used to.  It may be small, but it's still a huge step.  No pun intended.
         And of course, it's April.  So that means a month full of rain, so we can enjoy a May full of beautiful flowers.  And today a pattern finally clicked with me.  When a warm front is nearing or coming through, I'm in pain.  Same with a cold front.  But there's a difference in the pain.  A warm front tends to bring a dull, widespread, almost vibrating pain that affects mostly my muscles in addition to my joints, which also have a dull ache to them.  Cold fronts are far worse.  With them, I feel a very acute, sharp, sometimes unbearable pain in every joint and prior injury, but less in my muscles.  My movements become very stiff.  Both fronts bring a worsening in joint swelling, but different types and areas of pain.  And I don't need a weather radar to see when rain or snow starts.  Just a few moments before any precipitation begins, the pain intensifies before it levels out (even if it levels out to almost unbearable levels, it still levels out).  I'm going to have to bring this up to my new doctor during my next appointment.  Maybe it means something, maybe nothing.  But it never hurts to ask.  At least I can out-forecast any meteorologist in the business :D

I'm Not Sure if I'm in Kansas or California....

     It's been an odd week here in general.  There was a pretty big fire in south Jersey this week (which is now mostly contained and mostly out, determined to be caused by arson according to several news sources) and a second one sprung up around the same area today. (hmm....)  And over the weekend, two other wildfires started in my area--one in the mountains near a popular hiking trail and the second the following day in the brushes not too far from the first, but near the end of a residential street.  You could smell the smoke from the first fire in my area during the course of the night because of the direction of the wind--made things a bit too close to comfort.  And naturally, as local police departments informed us on Facebook about the events, there are always the handful of morons who make stupid comments that have nothing to do with anything--like one worried about it's proximity to a popular commercial farm that is a pretty big tourist attraction (including a corn maze and "haunted hayride") every Halloween.  Yeah, because I'm sure that's what residents in the area were concerned about at the time.  And the usual small-town rumour mills about how it started (this stupid farmer burns his fields! (leaving out the fact that that "stupid farmer" has a burn permit and the fire department is always on scene during this process) or "that idiot who burns his trees and shrubs in barrels probably started it!" (refer to the permit comment above) 
       And today the wind is even worse as a cold front comes barreling through the area.  So I sit here with my trusty laptop, taking a break from a magazine dated back from February (I'm slowly getting through the pile, but they come every week!) and reflect on the rest of the weekend and upcoming week.
         My original plan for yesterday was to skip my 1st dose of twice daily pain medicine so that I could drive to my aunt's house for Easter, like I do every year.  I even went out on Saturday afternoon to clean the interior of my car up---take the garbage out, empty the ashtray, wipe the dashboard down, and most importantly, de-fur the seats from Friday's vet appointment before my parents and I showed up looking like we were wearing fur coats.  When I woke up at 8am yesterday, I wasn't quite sure that plan was going to work so well, but I put off taking the pill as planned.  I learned last week that even if I feel fine and can do basic things like cleaning, laundry, pouring a cup of coffee, driving is NOT a good idea.  By 10am, I figured I had about 3 hours to get ready before I had to hit the road, so out came the pocket knife and I cut the little pill in half.  In theory, that should do the trick (or at least take the edge off) AND I could drive, right?  Not so much.  So I finally told my mother that I had no other choice but to take the other half of the pill, just how much pain I was in, and how swollen my joints were (not that the claw like hands and the fact I couldn't even twist my ring, let alone get it off my finger were a clue).  She was a little upset, but understood and said it wasn't a problem.  In a way it kind of worked out for the better.  I learned that about 430 in the morning my dog woke her up gagging and about to throw up, so she had to rush her outside before she harfed in the house.  That'd wake anyone up for good in the morning.  She'd also been scratching and biting at herself since Friday afternoon, so instead of having to take her with us to my aunt's with at least 5 small children running amok, I could keep an eye on her at home.  She was just having a mild, but common, reaction to a vaccine and flea/tick treatment. 
       It didn't really make me feel any better.  Except that whole having to pretend to either ignore or be nice to my brother part while he pretends to ignore or tries to be nice to me.  Most family gatherings, the kids run around and play, my aunt and uncle are in and out of the kitchen cooking (unless my uncle is grilling something), my cousins kind of float around the place, my other aunt and uncle sit at the table or at the kitchen island making conversation, my grandmother sits on the couch in the living room with my mother and I nearby and my grandfather has the best seat in the house--the recliner in the corner.  On the tv is either a sports event (which one depends on the season), or some cheesy children's comedy.  And he never misses anything that goes on, either on tv or in the house.  Every once in awhile, we're blessed to hear a story or two about what it was like to grow up when he did, or when my mom and her siblings did, the occasional story about work, the old neighborhood, history.  And then there's always the ranting about one sports figure/team or another.  Especially baseball and especially the NY Yankees.  And it's not a visit with him until you hear him rant about commercials.  From how stupid advertisers seem to think we are, to how stupid they portray men, how racist they can be, obnoxious, or how the ads are just a waste of space.  I never laugh in front of him out of respect, but I can't help but laugh just the same because my mother and I are just as bad. 
         I tried not to cry yesterday while I was sitting on the couch thinking about the simple things I was missing out on, including seeing my grandmother again.  She wasn't looking so great at Christmas because of some kind of cranial fluid overproduction (I still haven't gotten the whole story), but since her surgery, she sounds a thousand times better over the phone.  If she sounds that great over the phone, I couldn't wait to see how great she looked in person.  It's not like she lives in the next town over or anything.  But, of course, me being me, I did cry on and off yesterday thinking about what I knew I missed out on.  It was made worse this morning after I picked my mom up and she told me how, for part of the afternoon, they played old home movies, including my mom's and her siblings' baptisms--all performed by their great uncle.  Old home movies of my great grandmother with whom I still dearly miss, even 12 years later... And all because I was in too much pain to even sit in a car for an hour (since my dad was going to drive) and sit on the couch all day if I had to.  I was just plain in too much pain to fake that I was even just a little bit fine.  No one should ever have to go through that.  Ever. 

Going To the Dogs

     Last March my 13 year old pitbull mix, Harley, passed away.  Just like every other dog we had, Harley was a rescue dog.  Time went by so quickly since I took her home when she was only a few months old.  So we buried her in her favorite corner and planted a beautiful weeping cherry tree over her grave to honor her.  My mother and I knew we wanted another dog when we lost Harley, but it just seemed too soon to even think about it.  That is, until we spent the day babysitting 3 of my nieces at my brother's place.  My father met us there after work and I had a few errands to run, so I left shortly after he showed up.  It wasn't until I walked through my front door to that eerie, total silence that her death had hit me.  It just didn't feel like home without a dog.  I wasn't the only one who felt the same way that night.
      The thing about Harley was she was a very stupid dog.  She was the sweetest, gentlest, cuddliest (even at 80+lbs) dog you would ever meet.  She was also very protective of my mother and I, but vicious is the absolute last thing I would ever call her.  And she was afraid of just about everything--ceiling fans, rustling plastic, thunder, vacuums, men in uniforms, the opening and closing of windows, anything that made noise, men in uniform...just about everything.  Yeah, a real mean pitbull, right?  But, like most stupid dogs, she was very easy to train.
      My mother agreed that maybe getting another dog wasn't such a bad idea after all.  The house was pretty empty without one, but she wanted a smaller dog than Harley since having an 80+lb dog in our smallish house makes things a bit crowded.  She also wanted another beagle mix (something about that racing stripe that gets her every time, I guess).  Then I found Gracie online along with her sister.  Her sister looked more like a German Shepherd, but with floppy ears, but Gracie had that stripe.  So I went down to the adoption drive to check both of them out.  And I fell in love with both of them.
       Gracie's sister was just this furry little laid back ball of mush.  It didn't matter what chaos was going on around her as long as she had someone's arms, lap, or shoes to lay on. Gracie was a bit of a different story.  She demanded attention from everyone.  She had absolutely no problems letting me pet her or hold her, but no other dog was allowed to get a treat without her getting one.  She was pretty vocal about that, actually.  Unfortunately, I was only allowed to chose one and my mom wanted Gracie. I did find out Gracie's sister did find an wonderful home, though.
       After a day like today, I miss the days of having a stupid dog.  I've taught Gracie all kinds of tricks to do (although I kind of regret teaching her to speak...she's definitely vocal enough!), but she only does them when she feels like them, or when she's in trouble and doing cute tricks might just make you less mad at her. 
     When Gracie first came home, she was a bit insecure, underweight, and deathly afraid of car rides.  A year later is a totally different story.  Sometimes I wonder who really rules this house, us or her.  She weighed in at a whopping 42lbs today at the vet (mom definitely can't keep saying she's just fluffy because of her husky type fur now!), and LOVES my car.  Sometimes she'll even run up the street just so that she'll get a quick ride around the block in my car since neither my mom nor I can run, jump, or climb fast enough to catch her.  She also knows where we're going when we're in the car.  She knows the way to Dunkin Donuts and the deli because I always buy her a little something when I'm picking up my cigarettes or coffee, knows the way to the bank and the pharmacy because the drive thrus give her puppy treats, knows the way to the dialysis center because that's where we pick up mommy! And of course, she knows the way to her favorite place in the world--Petsmart! 
        So about a half hour after I had to give her benadryl for her vaccine (which put her into hyperdrivex10), a split lip, chipped tooth, and a black eye just to get her into her harness, she goes flying into the car and starts to settle down.  Until I made a right hand turn where I'd normally make a left to go get her treats.  Instantly, she knew something was up.  And she went from a pretty calm, curious dog to an antsy paranoid one.  It was kind of funny that just with that one turn she knew this wasn't a normal trip for something good... something was up.  In less than 5 seconds in the waiting room, she managed to start a riot in the back kennel with her barking and was immediately moved to an exam room where I'm sure some poor technician is still cleaning up excessive amounts of her fur and drool.  I don't think she left a square inch of that room untouched by either.  Where she didn't pace, she shook herself as if to make sure to make the biggest mess she possibly could.  And all for less than 10 seconds of work by the vet.  Go figure.  And now tomorrow I get to clean out my car because yep, I was right... it looks like a dog exploded in it, so unless I want to show up to Easter dinner on Sunday looking like I'm wearing a fur coat, it looks like I'll be on my hands and knees with a shop vac and a LOT of armorall.  And, naturally, one day next week it looks like a trip to Petsmart (after we get mommy from dialysis) just to make sure she'll get back in the car again since her next booster is due in 3 weeks... but this time I get to use twice the amount of Benadryl so hopefully it'll calm her down a bit. Hopefully.

I Think I'm Better at Watching Grass Grow

       I'm ready for this week (and weekend) to be over with already.  Monday brought a very stressful, aggravating, and discouraging rheumatologist appointment (except for the agreement to go back on medication to help control complex migraine symptoms, hopefully at least some depression relief, and some weight loss along with it), Tuesday was to make an appointment with the vet for my dog to get her shots and brought a very scary and stressful car ride (my mom needs to adjust to driving my car again with pretty good responsive acceleration, brakes, and steering, unlike my dad's temporary loaner car), yesterday was just one of those unmotivated blah kinda days that I was supposed to go through a month's worth of mail and pay some bills and call my ID specialist to see if my lab results were in, set up an appointment to get 2 new tires my poor car has desperately needed for far too long, and today was to actually get the new tires put on, buy windshield wipers (something else I've been putting off), get my nails done, and tomorrow is just the usual pick mom up, but with a twist:  hide a Benadryl in a piece of Velveeta cheese and take the mutt to the vet for her shots.  THAT should be fun. 
         I found out yesterday afternoon that my labs are back, but the doctor was at the hospital with patients and would try to call me today with the results.  At least his tech was going to mail me a copy, which means if it wasn't in my mailbox today, it will be on Saturday, since there's no mail tomorrow with it being Good Friday and all.  Naturally, I didn't get a call, so I'm still trying not to climb the walls waiting for the results. 
     Also after I made the appointment for my car, I made a smartass remark that now that my poor car is getting the long overdue, expensive maintenance done on it, it's going to blow up out of shock.  True to form, it almost did last night.  A hydraulic line broke on my dad's work truck and started a small fire while he was driving home yesterday.  He put it out, drove it home, but it was still smoking pretty good as he strolled through the door laughing and asking where the fire extinguisher was.  Of course, his truck is parked about 2 feet next to mine.  Luckily, there was no fire, but still, next time I think I'll just keep my mouth shut. 
       Naturally, I forgot to pick up the windshield wipers, so it looks like I'm buying them tomorrow while I'm out.  I did feel bad when my car was in the shop today because the interior is a total mess and other than a good vacuuming, it looks like it needs about a dozen bottles of armorall to clean it up.  I planned on cleaning it earlier in the week, but realized it made no sense, since the mutt will be in the car tomorrow, so by the time we get home, it'll only look like a dog exploded in it all over again.  (As she's peacefully curled up on the other side of my laptop, stealing more and more of my blankets)
      I also didn't get my nails done yet.  Part of it was because I was just too exhausted, but the other part is my fingers are still/again too curled for me to get them comfortably done at the moment.  I'll probably break down and get them done either tomorrow or Saturday.  I mean, they are kinda rough looking and for the first time since I think I was a kid, I actually bought an Easter dress, so why not at least have my nails look good too, right?  I've even debated back and forth whether or not to buy a new bottle of foundation (since I rarely wear it and just threw out my 3 year old bottle a few months ago) so that I don't look half as dead as I feel.  Granted, most of my family doesn't believe I'm sick anyway, so wearing good makeup to not look like death will definitely not help my case, but I'm starting to think to hell with it.  I know something's wrong, I have 2 specialists who know something's wrong, and my mother knows it, too, so I shouldn't care what anyone else thinks. 
     I guess the bottom line of this week is I just plain suck at having to sit around and wait.  Wait for calls to be returned, emails to be answered, parts to be delivered, appointments to happen, the IRS to push that magic little button to release my damn tax return.... I think I'd do a better job of just laying in the yard watching the grass grow.