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!  

Tuesday, September 9, 2014

It's the Little Things

     Those who are friends with me on Facebook have probably seen that I recently cut my hair off.  This was a huge deal for me.  I love(d) having long hair.  When the stylist cut it, the first swoop through was to the tune of 8-10 inches. The first clump that fell in my lap had me taking a quick intake of breath with thoughts of "Oh God, what have I done?"  After- I think it looks really cute.  It's easier to care for, that is certain and that was the goal.  You see, courtesy of the herniated disc in my neck, I keep having my shoulder and arm fall asleep.  It's not painful, it's just the pins and needles thing, but it is very irritating.  Especially when it happens every time I try to brush my hair or if I lean on my desk or lean against the car door.  It usually involves a few minutes of trying to shake it out because the strength drains as the numbness sets in.  So- I chopped off the hair since I could not properly care for it in a reasonable amount of time.  I then sank into a bit of a funk because I felt like I had sacrificed my slow-growing, long, straight hair to the Gods of Chronic Illness.

    Another issue that I have been dealing with is a LOT of Acid Reflux- especially at night.  I cannot tell you how many times lately that I have woken myself up coughing and choking on acid and the burning in my chest.  The doc has put me on Prilosec and it helps- but it's not an "every day for the rest of your life" drug so shortly after tapering off, it comes back with a vengence.  Sunday night it was so bad that I woke my poor husband up almost every time I woke up.  Now, himself normally sleeps like the dead and is cranky if woken in the middle of his sleep but he really came through.  I sat up in the bed, groped around for TUMS and in tears because the acidity was so bad in my throat and I didn't realize that I had woken him.  Without a word, he got up went downstairs and grabbed me a bottle of water.  Each time after- he woke up and made sure I had water available and stayed up with me until I could get back to sleep.

Neither of these things are earth shattering.  While I understand that, it came as a revelation that it's the little things that can make a huge difference.  Something as simple as a haircut can spiral you down, down, down while a gesture of kindness can make things all better.

So I ask this of you.  When you are out and about today, in interactions with others or even when you find yourself facing self-doubt, stop.  Think about how your actions create a ripple effect.  All it takes is a pebble to form ripples across a pond.  All it takes is a kind word or gesture- or a careless word or thoughtless action to make or break your day or that of those around you.  

Thursday, August 14, 2014

It's Always Something.

It's back to school time again.  That means I am incredibly busy at work and working too many hours.  It happens twice a year for about a month each time and by the end, I am like this guy:

My thanks to whomever created this!

It seems that every "Rush" something happens.  Last Fall was when I was diagnosed with 5 bad discs in my back and then stressed myself out so much that I had horrific hives.  This year, I am having a tremendous amount of swelling in my feet and ankles.  My NP thinks I am retaining water so she has added Lasix and Potassium supplements to my medicinal arsenal.  That means, including vitamins and such, we are at 6 pills in the morning, 3 at noon and 5 in the evening.

 Before she could prescribe the Lasix she did blood-work. She found that though my kidneys are great (that's important to the water pill) my liver enzymes are elevated again so I will have to go back in two weeks to have them checked again.  She advised that I stay away from alcohol (ummm, I average 2 drinks per YEAR and have for 6 years now) Tylenol (I knew that- do you KNOW how many meds have acetaphinamen in them?) and Advil.  I came home and looked it all up online to see if there's anything that I can do that doesn't involve meds and I found that B-12 helps so that became morning pill #7. 15 pills a day.  That's a lot by any standard.  I also found that eating whole foods and less processed can help as can things like Kale and berries and such.  So- this morning I will be having whole grain toast with a little Jif Whips (peanut butter with chocolate) and banana (go Potassium!).  For lunch it's brown rice and kale salad.  Dinner will be at work because we have an event tonight from 7-10.  I have ordered a bunch of food- including a popcorn machine, a cheese tray and a veggie tray so I will stay with those and stay away from the yummy brownies and such.  I am going to have to be really mindful of what I am eating because to be quite frank- I am not up to dealing with any more ailments.  It's just too much.

That said- I am still looking for silver linings.  I am grateful that with all that's going on I haven't wanted to go back to smoking.  I am grateful that I have wonderful parents who fuss at me if I am not taking care of myself. I am grateful that hubby is back home and we are working on repairing our relationship.  I am grateful to have a son who calls or texts me every day.  I haven't figured out how to be grateful for my 47-year-old-out-of-shape-and-falling-apart body, but given enough time I will.

Tuesday, August 12, 2014

It's a Drive By Post!

Morning All!  Just a quick drive-by post this morning as I am heading into my RUSH period at work.  For those that don't know me, that means that it's "Back-To-School" time and managing a college bookstore, this is my Black Friday period.  It will be crazy busy for the next 3 weeks and I will be working 6-7 days a week.  It's wearing- and exhilarating at the same time.

Yesterday started the latest round of Oprah and Deepak Chopra's 30-day meditation "course".  This is a great time for this for me personally because I get their email in the morning, then in the evening when I am trying to shut off my brain so I can get some sleep I repeat their "Centering Thought" over and over until I drop off.  It's VERY helpful.  I am going to post today's email below to share with you along with a link if you want to join in.  Have a wonderful day!

Day 2 — Feeling Inspired
Welcome to Day 2 of Expanding Your Happiness.
Today in meditation, we connect with our inner being, the source of all inspiration, creativity, insight and joy. In opening our hearts and minds to pure spirit, we allow ourselves to take it in to recreate and to renew ourselves. Inspiration is not only for artists and visionaries, we all benefit when our lives are refreshed and revitalized with spirit every day.
Meditation opens us to infinite possibilities and allows us to remake ourselves anew each time we sit in silence. To feel inspired is to step into the present experience unfettered by past disappointments and future fears. You are free to participate in the creative joy of life in the moment.
Our centering thought for today is:
I am filled with spirit.