Wednesday, January 28, 2015

Appearances Can Be Deceiving

      I was in two different...discussions (I don't want to call them arguments because they were mostly civil) this week in regards to disability.  Both left me very disappointed and a little hurt because of some of the remarks made by people of whom I thought better.  

     The first came because someone was complaining that their boss "played favorites" by cutting a co-worker who was going through personal issues slack and the person who was initiating the conversation was resentful that they had to do what they felt was extra work.  My first response was to pose a question:  
"I don't mean to be offensive- but you do know what this person has going on that may be causing the manager to cut her some slack? For example- I have medical conditions that are chronic and painful. I have learned to live with them but when they flare up at best I can manage to get to work and give customer service all day, There are days I can't lift a stack of 5 mass market paperbacks to save my life. There are better days when I power through a pallet of textbooks by myself. Just looking at me, you would never know and I don't update everyonebecause my medical issues are between me and my regional and I know that I give 100% of what I am capable of every day." 

 The immediate response behind me was:

They hired that person under the condition that'd they be able to lift a certain amount and do a certain amount. I think it's unfair if they have a medical condition. Why should you have to suffer. (I am a rotten human being, PS.)

My next thought was "Wow, so this person thinks that my fellow chronic illness people and I should just go away so we don't inconvenience anyone?" I said something to that effect and that when I was hired I was perfectly healthy- that the illnesses didn't start for several year and that when I am doing well I work my tailfeathers off to sort of "make up for" when I am not well- and that I don't feel the need to broadcast when I am not feeling well and why because it's between my boss and I and my medical issues are no one's business.  They replied that we (people with chronic illnesses) should just get a new job because it not fair to anyone else that they would have to pick up our slack.   I was even more dismayed when several other people chimed in with the same attitude along with sharing articles about "dealing with lazy-coworkers" and such.  Now- not everyone was like-minded.  That cooled the steam coming out of my ears but I had to walk away because until then I had not encountered in "real life" that attitude and I was too shocked to be civil.  

The second was regarding handicapped parking spaces.  The Today Show did a story on Facebook "Name and Shame" pages because someone left a note on a Coke truck parked in a handicapped spot to unload that said "Congratulatons!  You will be featured on the Disability Parking Wall of Shame.  Take care!"  Someone that I know casually replied that they see able-bodied people get out of cars in handicapped spots- what's the difference?"  A couple of people replied that not everyone who is disabled needs a wheel chair and one woman said "You may look at me and see a full-bodied person but not all disabilites are visible."  

There was a bit of back and for but to which the person I know replied" Well if you can physically walk and move around then no need for a permit!!!! There are all kinds of disabilities and some do not require a front row parking spot!!!"  to which I finally chimed in with:  "Actually- I have several illnesses that are chronic, incurable, painful and limit my mobility. While I may look great getting out of my car, I use the cart to lean on for balance and just walking around Kroger and standing in line can cause my joints to flare up and my back to go into spasm. Looking at me- you don't know that I am legally disabled, but I am and that's why I have a handicap plate on my car. I shouldn't have to tattoo my medical conditions on my forehead because someone doesn't think I look disabled enough. Many of us in the autoimmune disease community deal with this all the time- and it only adds to the stress of living with the diseases.

There has been no reply since so I am hoping that we made her think.  I was a little taken back though.  I have dealt with people like that in my real life so it was less shocking.  I just think what threw me was who it was coming from and how adamant they were.

Perhaps it's because I am taking longer than normal to "recover" from my Rush period; perhaps it's because I have been having more "I am so sick and tired of being sick and tired" thoughts of late but I seem to be more hypersensitive to the school of thought that if people are disabled they should just go away so able-bodied people are not inconvienced or that unless someone can see what's "wrong" with you, you must be trying to abuse the "privliges" that really disabled people get.  

I guess what I want to say is this:  Unless you know someone personally, unless you know what's going on in their lives, don't just look at someone and make a snap judgement.   It's no one's business WHY we have a handicapped plates on our car.  It's no one's business why we are allowed to take it easy at times.  Unless you want us to ask you about extremely private questions about your life, your medical history- don't expect us to divulge that information just because you decide that we don't "look disabled" enought for your tastes.

Monday, January 5, 2015

Back to Work and Back to Spring Rush

    I don't know about you but it seems most of us have a rough time getting back to the daily grind after a vacation or time off.  The last two weeks have been lovely-ish.  We had "short" days at work, 8 hour days instead of 10.5 but only four hours a day open to the public- the rest behind the scenes.  We had a two day work week for Christmas week and four-ish (I worked Saturday) for the New Year.  Today we go back- and straight into extended hours.  From now until MLK day- it's time to fire on all cylinders.  The two hard parts about Spring Rush for me is that we go from end of semester (which is crazy busy) to the holidays to Rush again in a matter of three weeks and it's hard to go from up to down to up again so quickly.  The old body just doesn't do that as easily any longer.  It must be done though because this job provides the health insurance that covers all of the medical crap so- I will persevere.  One thing I have learned is that the key to perseverance is preparation.  

    How have I prepared?  I have bought a brace for my back since I will be on my feet all day every day.  I have made sure my RX's are all filled.  I have prepped easy to eat on the go foods (first part of this week: rice crackers and summer sausage, baby carrots and popcorn for lunch and snacks, yogurt with granola for breakfasts) and I have soup that I pulled from the freezer for when I get home late tonight and tomorrow night.  I have stocked my purse with Thermacare in case I need it, I have backups on on my Naproxyn and Flexeril "packed" and my clothes are planned out for the week.  The other half will fend for himself till the weekend and will help me take care of the dogs. The DVR is set for all the returning shows this week and next. I already have my grocery list going for after work on Saturday and have started planning what I will make on Sunday for meals for the next week. While I am at work on Sunday, I can count on Jim to wash and dry the laundry so I don't have to worry about that and I can fold on Sunday before bed since it's a mindless task that I enjoy.  I think I am as ready as I can be, all things considered.

    All of this will allow me to go to work, do the best I can, come home, snuggle pups and go to bed so I can get up and do it all again tomorrow.  Next week after we make it through the first two days of school I will start planning my recovery period over MKL weekend.  That will keep the light bright at the end of the tunnel.

Josh Shipp says "Perseverance is stubbornness with a purpose" and that is exactly how I am looking at this rush.  

Saturday, January 3, 2015

Looking Back at 2014, Looking Forward to 2015

     Looking back:

     I don't know about you, but for me 2014 was interesting in a lot of ways.  Of course, there were the usual medical issues and more. On the physical side on the positive- I did manage to remain cigarette-free for all of 2014.  In two weeks I will hit the 13 month mark! There were great things that happened on the personal front as well as difficult. Good things at work and difficult.  Pretty much a normal year for most people.  I have had years like this before- who hasn't?  Somehow though it didn't feel normal, I just felt like something in me was off.

      I also found that I just didn't have the energy or patience to write.  Looking at my blog dashboard, I only wrote 14 posts between one year ago and today.  That's not a lot for someone who is a known motormouth!  I would open a new page, stare at it for a while, become frustrated and delete the auto-draft.  I did that a lot on my other projects as well.  I didn't have the stamina to push through.  I just didn't have much to say.  Well, I did. but it was often snarky because I found myself irritated a LOT.  I wondered occasionally if it was a mild depression because I didn't rebound as quickly from the news of the latest diagnosis as I normally do.  It's more than that though, it's more than what's going on in my life.  I would find myself reading or watching the news and going back and forth between just shaking my head, wondering what the heck is going on in this world or giving thanks that I wasn't raising a child in it.

     This year I watched the events of the year unfold around me, around this country and around the world and I just could not push through all of the overwhelming negative to find the positive in it.  We; people-friends-families- neighbors-towns- the whole country; are more divided than I can remember in my life- and I was born in the 60's!  We are divided racially (Still? Again?), politically, religiously, and in terms of values and we are about it than ever before.  I found myself shocked at the things that come out of the mouths (and keyboards) of both strangers and people that I thought I knew.  It gave me a huge sense of disappointment in them for what was being said, how it was being said and the actions being taken.  It gave me a sense of disappointment in myself for not recognizing those traits before things came to a head.  I deleted/"unfriended"/walked away from a surprising number of people in my online life and intentionally allowed relationships to lapse in my real life.  The negativity was just too much.

     Now I know that there are people out there every single day who are doing good things.  People who are trying to make the world a better place.  It's just become hard to find them when their stories are drowned out by discord, by rudeness, by disrespect, by hate.  Just writing this and reflecting upon it has made me feel so tired and so helpless that I had to stop, close it and come back to it later.  Needless to say, I was rather looking forward to the end of the year and a new beginning.

Looking Forward:    

    It's a new year.  I didn't make a list of resolutions this year as I often have in the past.  Like so many, my resolutions tend to be out the window by February.  Last year's certainly did.  :-)   This year, instead, I am making it just one goal to "shake it off".  Last year was a big step backward for me in many ways and rather than allow myself to be mired in the things I cannot change I need to learn to let it go and move on to things I do have the ability to influence.  When my husband and I were separated I repeated the Serenity Prayer a lot.  To the point that it was almost by rote.  When that changed, I kind of let that drop off and that may not have been the best idea.  It's a simple thing but it allowed me to step back and remind myself that I can't take on or take in everything because I tend to take things to heart.

    In an effort to turn things back around  I have decided to utilize two "mantras" for 2015.  First, as I mentioned, is the Serenity Prayer:

The second is this:  

    Keeping these in mind should allow me to let go of what has been weighing me down and to re-focus my attention on all of the myriad of blessings that fill my life and on the wonderful things that people are doing for the world around them.  They are many, they are important, and they deserve my attention far more than any of the rest of the nonsense that's been going on.

     The first step is to make it through this Back-to-School rush (classes begin a week from Monday) and then get back into a routine.  Rush ends around the 18th so the light is at the end of the tunnel.  Then it will be time to make this the best year yet.  Bring it on 2015~ I am ready for you!  


Friday, October 10, 2014

The Verdict is In?

I saw my Rheumatologist today and the verdict is in;  I am a hot mess.

They now give you a "Patient Plan" at each visit that outlines everything going on.  Looking at my "plan" is depressing at best.

My "Problem List" reads as follows:

  • Rheumatoid Arthritis
  • Fibromyalgia
  • Degenerative Disc disease
  • Rheumatoid Lung disease
  • Acid Reflux
  • Chronic Fatigue Syndrome

My meds list is now 8 RX's deep- plus a multi, B-12 and Prilosec.

Today's assessment reads:

1- Rheumatoid Arthritis is to the forefront (aka- I am starting to flare)
2- Current use of high risk medications (the Lasix perhaps?)
3-  Abnormal Liver Enzymes
4- Fibromyalgia is also at the forefront.

My weight has spiraled up, up, up since I quit smoking (almost) 10 months ago.  *It's as if my metabolism just died when I gave up on cigarettes and my BMI has ballooned*.  Vital signs are good- up a little but definitely within normal limits.

Current Orders:
- Begin Aquatic Physical Therapy after I return from my **vacation**
- Comprehensive Metabolic Panel
- Quantiferon (R) TB Gold (incubated)

Labs pending:
- C-Reactive Protein
- CBC (includes Diff/PLT)
- Comprehensive Metabolic Panel
-SED Rate by Modified Westeregren

See- Hot mess! Curling up in a ball and sleeping for the next.....5 years (?) sounds like a beautiful thing.  But that's just not possible.

Despite all of that- there are positives in my life.  These are the things I will be focusing on.

- Vacation.  Did I mention Vacation?  My best friend and I are heading to Florida next week for 5 glorious days.  We are meeting at the airport in Orlando, we are spending a couple of days at a resort on Cocoa Beach for a wedding of a dear friend, then moving to Universal Studios.  Sunday we will visit the St. Augustine Lighthouse.  It is reportedly haunted so we are going to do their night tour.  Check it out here.  Monday we are doing Harry Potter.  I know- most people go to Universal Studios to do the whole thing, but not us.  We will do the Wizarding World, Hogwarts Express and Diagon Alley.  We really don't care about the rest.  The goal is to soak up as much of JKR's world as we can.  I am smiling just thinking about it.  I don't care how much  pain I am in, I have given myself days to recover when I come back.  We are doing all of the rides, we are doing all of the steps to the top of the lighthouse.  I will NOT allow my illness(es) hold me back from this once in a lifetime trip.

-Of course, there's my wonderful support system.  I have been very....whiny lately.  I hate whiny but I have just been so exhausted that I don't want to move and they have let me be.  That's the best thing we can do when I am like this. I have to do it, I don't have to like it.  Soon enough, if I keep it up they will give me a much needed kick in the a$$.

-My four-leggers.  A week or so ago, I just couldn't get out of bed.  I tried.  I got up and got ready for work and I was in so much pain, and so exhausted, that I called work and said that I would be a few hours late.  I didn't even change, I just fell back into my bed.  At 10:30 am, I tried to get going again and it just wasn't happening.  So I messaged my assistant manager and asked her to switch closing nights with me.  She agreed and I put my pajamas back on and went back to bed again.  I got up at 5 for a few minutes and 8pm for an hour or so then back to bed.  During this entire day- Auggie stayed in my bed with me.  He refused to move.  He curled up against my leg and stayed there.  The only reason I got out of bed was because he would not move away from me and I knew he HAD to go out and do his business and eat dinner.  Harley-girl is fighting her own arthritis so she lay down on the bottom step and stayed there.  When I came downstairs, she was my shadow.  Both of them offer such comfort.  I only wish I could be the person that deserves and is worthy of such devotion.

- My work.  It's at a place now in the cycle where I can sit to work. No 10-12-14-16 hour days on my feet.  There's a LOT of data entry right now, plus buying decisions, researching titles and emails flying but I don't have to be on my feet for any of it.  That's a relief.

- It's HAUNT season!  If you know me, you know I love, love, love Halloween.  I found my "niche" in the haunted house last year and I am back at it this year.  I can't tell you the joy it brings me.  I am sharing my weekends with a bunch of kids (I have bras older than a lot of them!) who are so creative and so thoughtful and so just excited to be there that I can't help but catch the excitement no matter how tired or sore I am.  They have been good to me too.  They are considerate of my limitations.  They are protective of my costumes and makeup and props and the room I am haunting in.  They even put a fan in there because my costume is so heavy!  Tonight there is a Halloween kick-off Parade.  I have been asked to walk in it but if I don't feel up to it, I can stay at the haunt and hand out candy.  They make me feel valued.  Like I make a true contribution- and I have so much fun doing it.  Everyone should have the opportunity to do this at least once.  :-)

I am sure there is more, but I have to take a nap before I go tonight.  I have a busy, busy, BUSY day tomorrow and won't be home till around 2am so I have to rest up while I am and the pups are both at my knee waiting to nap.

So the verdict for now is- yes, I am a mess physically but there are so many more things to be grateful for that I cannot let this overwhelm me.  We will see where we go with the new PT.  Until then, we take it one day at a time.

Have a lovely day!

Wednesday, October 1, 2014

There is No Limit on Who Can Be Your Support System.

     I have worked with "kids" of all ages for almost 20 years now.  Working in the restaurant setting, the bar scene, on college campuses and now in haunted houses has opened my eyes to exactly how many different kinds of family units there are and how many people grow up in truly difficult situations.  Some have amazed me, some have horrified me, some have just plain broken my heart.

     I have mentioned here before how grateful that I am to have the support system that I do.  My family (those I have by blood, by marriage and by choice) and my friends mean the world to me.  They pick me up when I am down, even when they don't know I am down.  They are there for the good times and bad.  They are loyal and honest and loving.  My groups is very diverse.  Male, female, straight, gay, young, mature, sheltered and worldly; all different backgrounds, all different life experiences and all different ideologies. What they all have in common is that they care about me and I care about them.  I couldn't ask for a better group of people in my life.

So what I would like to say to my young friends is very simple:  you never know who will become part of your support system.

You will encounter new people every day.  Don't discount someone because they are not like you.

That person  you think is so different is living (has lived) a life you know nothing about until you take the time to ask.

It only takes one thread to bind you together on a deeper level.

Don't be afraid to cut the toxic people from your life, all they add to it is a lesson on how not to treat others.

Surround yourself with positive people, those who encourage you to be the best you that you can be.

Spend time with people from whom you learn, let go of those who only want to drag you down.

Stop and really look at your friends, your family,your acquaintances.  You may be surprised to find out who is really there for you.  Don't take those people for granted.

Most of all, share your lessons.  Part of grown your support system is being that person for others.

Saturday, September 20, 2014

I Had a Light Bulb Moment!


     When I am "haunting" I have a lot of time to think at the beginning of the evening.  Between makeup and getting into costume, waiting for the pre-haunt meeting and (being at the back of the house) waiting for the first groups to get from the front door to my room and then in between groups.  Yes, there are ambient noises but having spent as many years working in bars/nightclubs as I did- I can easily tune them out and almost meditate.  Unfortunately- I have not mastered meditation so my brain wanders all over the place- especially when I suck down two extra large coffees and already have a lot on my mind.

      As I was waiting this evening I was stretching a little and my arm did its "lets go numb" thing.  It instantly irritated me because frankly- regularly losing my strength and distinct tingling from my shoulders to my finger tips is getting old.  I shook it off after a few minutes and went back to "work".  A little while later it happened again and again and my frustration with it rose higher and higher.  About two and a half hours into the night we were back from a break and the tingling started to spread down my arm once again.  This time however was a little different.  I was relaxed from my break (and sucking back another coffee) and my end of the house was silent.  I was thinking about the herniated disc that's causing this problem and its counterpart in my lumbar vertebrae.  I considered that I have been battling lower back pain from the bad lumbar discs for many, many years now and this "falling asleep" thing in my upper body was fairly new. Rather than instant frustration a quiet thought slipped in.  "At least it's not pain".

     I actually jerked upright and took a step back for a second.  As the arm hung there in a full-on pins and needles state the light bulb came on and the thought seemed louder.  At least it's not pain.  I live with pain every single day.  Fingers, toes, hands, feet, knees, elbows, ankles, shoulders, back. Not always at once, usually bilaterally but not a day goes by that there's not some kind of pain.  The more I thought about this niggling little revelation I realized that the reason I have been so frustrated by this is not just that my body is falling apart.  I've been fighting pain and stiffness and loss of strength in my body daily for over 9 years now. I know how to deal with the pain.  I know how to medicate it, to compartmentalize it, to function with and through it and to give the stiffness time to work its way out so I can go about my day.

    No, the frustration comes because I don't yet know how to deal with this development.  What's really interesting is that while I was thinking this through, it came to me that this has been going on for longer than I wanted to think about.  I remembered talking to my sister over a year ago on several different occasions when I would be driving along and both my arm and my leg would go numb!  It's one of the things that I told the chiropractor at my early appointments and that's how we found of what rough shape my back was in.  It was an occasional thing and I thought it was more funny than irritating at the time but it was there.  When it clicked it was a "WOW" moment for me.  I pay a lot of attention to what my body is doing but this must have slipped by me until it got to the reached that that it was happening all too often to ignore.  At least it's not more pain.  I can live with this now, at least for the time being.  I will eventually have to decide if I can live with it long term or if I can take the time off that I will need to repair this latest insult to my body.  In the meantime, I have that thought to give me some peace of mind about the whole situation.  Now I know it could be worse. With that I can get some rest. 

Saturday, September 13, 2014

It's A Wrong Side of the Bed Kind of Morning

     It's Saturday.  It's cloudy and overcast and I woke up good and cranky.  Hubby had to work this morning (that's a good thing) and his alarms went off at 6 and 6:10 because he had to leave at 6:30.  Evidently he was running late because he ran out quickly.  As soon as he left- the dogs LOST IT.  This was a break with their routine.  Normally when one of their humans wakes up- they go right out to do their business.  This time, one human jetted out the door and one stayed in bed.  They didn't like it and set up a ruckus.

     Normally I would be thankful for sleeping till 6:30- that's 2 hours after I normally wake up after all.  But last night I took a Lunesta because I haven't been sleeping well and I don't know about you- but when I take a Lunesta (or Ambien, or AdvilPM or any sleep aid), unless I sleep until it wears off, I wake up feeling like I am hung over.  That's not a good feeling.  To top it off, my shoulder started doing the "go numb and throb" thing which means I tossed and turned and slept so that the disc is inflamed and both wrists joined in the fray.  So- crankiness ensued.

    Now you may be asking "Why didn't you just go back to bed?"  Well, with the way the pain kicked in, I had to take my meds ASAP, and for some reason my Tramadol wires me right up.  That means I had to choose between sleeping off the Lunesta or taking the pain meds and the pain meds won.

     While I am waiting for the meds to kick in I have looked over my schedule for the week, checked 2 of my personal email accounts, took care of some stuff work work and watch some fluff on the DVR.  I have to get some laundry folded, pay some bills and then hopefully nap before I head to the Morgue for "Scare Tactics" and makeup rehearsal tonight.  Next weekend begins full dress rehearsals for our haunted house with "Friends and Family" night on the 26th- so that's something to look forward to.  That means my weekends will be booked through November 1st and it's a lovely thing.

    I also got to talk to my sweet son this morning.  Josh and I used to talk every day but he has gotten a promotion to "Site Director" and his hours have changed.  Between his new responsibilities (welcome to management honey!) and being a father to his lovely girlfriend's kids, his time is stretched thin and we haven't been able to connect the way we used to on a daily basis.  This morning he and Christina were taking their couch to the recycling center (they are getting a new one this week) and he gave me a call just so we could catch up.  I miss him like crazy but I know that if he were out here, his life would be very different.  He would not have his little family (and he is so crazy about Christina, Jake and Abbey) and he would not be managing a site for work.  The irony is- he stayed behind because of his karate and recently he has left the dojo.  He decided to step away from his position teaching kenpo and concentrate on learning Brazilian Jui Jitsu.  He's been taking classes for a while now and discovered that he really missed being a student.  His life has undergone so many changes in the last few years and he has grown up so very much.  I make sure to tell him often how very proud of him I am.  It's important that he knows that because we are so far apart.

    The more I think forward, the more I get over myself and the day starts to brighten, even if the weather doesn't.  They say there is only a 20% chance of rain but it's crazy overcast.  Not a bad thing at all.  It's chilly enough that I won't sweat myself through my costumes tonight.  Both are really heavy so when it's hot- it's a good thing I have barrier spray because I would sweat my makeup right off!  :-)   That will make it much easier tonight to play with makeup.  So there we go.

     I hope you are having a lovely weekend!