Day 19

20 facts about yourself:

Groan!  Really?  Didn’t this just go around FB awhile ago?

Here goes..

1) I am a huge sports fan.  HUGE.  I love hockey and football in that order.  But I can be persuaded to watch basketball, especially during March Madness.  Forget about baseball.

2)  I am a PITTSBURGH sports fan.  The Steelers and the Penguins.  The Pirates have to get back into my good graces.  Making the playoffs was a start.

3) I have wanted to “do something” in the health industry since I was a child.  I practically grew up in the halls of Presbyterian Hospital in Pittsburgh (now the dreaded UPMC Presby) when I was a kid because my dad and mom are both nurses.

4) I met my best friend on the planet when I was 8.  We have been friends through EVERYTHING.  Boys, crazy family, marriage (and in my case, divorce), and now kids.  We live 1,500 miles apart, but we still keep in touch, frequently, and I know I can text/call/email her with anything at anytime and she will be there for me.  As I will be there for her.

5) I met my husband on AOL in a teen chat room in 1997.

6) I have a very eclectic taste in music.  I love the Los Lonely Boys, The Clarks, Pearl Jam, Eminem, Led Zepplin, The Who, Adele, Taylor Swift, and most “pop” music.

7) I rarely watch “mainstream” television.  I watch live sporting events and The Walking Dead.  And maybe a few documentaries on WWII or history.  I have never seen an episode of Duck Dynasty, Honey Boo Boo, Grey’s Anatomy or any show like that.

8) First day on my driver’s permit, I crashed my mom’s car.

9) I used to have my tongue and belly button pierced.  Like every girl my age in the late 90s.

10)  I originally wanted to have four kids.  Who knows…maybe there is still time for that..

11) I made all my flowers for my second wedding.  With beads.

12) If I had more money and time, I would scrapbook.

13) I couldn’t grow a plant if my life depended on it.  So I hope the apocalypse doesn’t happen soon.

14) I recently learned how to cook.  As in the last year.

15) I’m still friends with my ex boyfriend from high school.

16) I am EXTREMELY drug sensitive.  A half dose of most things is good enough for me.  I have found this out many, many times over the years…the hard way.

17)  I have a penchant for contracting rare or difficult to treat illnesses.  C.Diff in 2005, possible ocular sarcoidosis (they still have no idea) in 2012.  And I don’t react as expected to typical treatments.  Lucky me.

18)  The left side of my body hates me.  My usual fibro pain is typically in my left shoulder/neck, left hip and left knee.  Go figure.

19) I was in marching band.  As a flag girl.

20) I have kept a journal off an on since I was 8.

So there you have it.  I tried to throw in some health ones because I primarily blog about health issues.

Day 15

Tell me:  How are you like your ma/pa?

Despite our difficulties, I can readily identify the traits I share with my parents.

Apparently, I have my mom’s facial features.  People have seen us and said “I can tell you are related”.  Which is strange, to me at least, because when it comes to physical features, I am a copy of my dad.

My mom is Polish/Irish, with blond hair, green eyes.  Obviously she’s white.

My dad is Mexican.  Dark hair, eyes, skin.

I look just like my dad.

My dad is quiet.  He loves reading, especially history books and zombies.  I’m just like him in that regard.

My mom is very dramatic.  Very opinionated, and very free with her opinion about everything and everyone.  Although I can be dramatic, I rarely share my opinion unless directly asked.

Like both of them, I became a nurse.

Like both of them, I am a die hard Steelers fan.  And like my dad, I’m a fanatical Penguins fan.  My mom likes hockey, but she doesn’t watch nearly every game like I do.

I’m a good cook, like my mom.  My dad’s specialty is breakfast.

Sunshine looks like her grandma.  People seriously ask if she is adopted.  When I lived in Pgh, people looked at me like I was the nanny i.e. “where did you steal that white baby from?”

Sunshine will never be called “quiet” in her life.  In that regard, she takes after her grandma.  But she has an enduring love for animals, and one of her favorite things to do is to take the dogs for a walk with my dad.

It’s interesting to see the traits that Sunshine has inherited.

And I hope Sunshine doesn’t take after myself and her grandfather with the autoimmune disease.

Sleep attack!!

I don’t have narcolepsy, but I call the extreme fatigue spells I get “sleep attacks”.

I worked my last six day week this week.

After work yesterday, I made cookies for the local domestic violence shelter (who helped me when I left Sunshine’s sperm donor) and then we had friends over.  I was in bed by 11.

I didn’t sleep well…at all.  Despite the meds.  I’m having RLS symptoms all over, not just in my legs.  I’m going to try to get to bed earlier tonight and meditate to help myself relax.  Providing that I can after watching the premier of “The Walking Dead”.

This morning, I woke up, had breakfast with the family and iced those six dozen cookies.

I made the beds (including clean duvet covers) and just lay down “for a minute”.

Despite the yelling, screaming, cursing that usually accompanies Steelers and Eagles games in this house, I was out like a light for more than four hours.

I wondered why I was left alone to sleep that long, but then my dad clued me in.  “The Steelers were winning.  You are obviously bad luck”.

So, thank you, Steelers, and Eagles, I will now be allowed to nap during the games for the rest of the season.


Good Lord, it feels good to be productive again.

I haven’t worked since July of 2012.  I was a hospice nurse (still am in my heart), and I couldn’t drive the 100+ miles per day to see my patients out in rural Texas.  I miss it..

I signed up for a contract job through a company that runs heath fairs and administers flu shots.  I used to work in the immunization department of the local county health department, and I left because I was bored.  But it is the perfect way to get my feet wet and get back to work.

So I sit in Walmart and watch the people go by.  I talk with the old people and the curious.  And I occasionally give shots.  I did 15 today.

And finally, pay day.

First order of business?  Give my dad some money.

I don’t know what happened, but the other day, he hugged me, said he was proud of me, and that he was happy I was living with them again.

I can’t tell you how wonderful that made me feel.  And it felt great to be giving him something toward the household bills, since we are now one big hippie commune.

My first instinct is to scoop up my husband and go to the Melting Pot to celebrate.  But I want to wait until we get a couple of paychecks under us first.

The day to day is a little rough.  I’m still exhausted and in pain most of the time.  But I’m getting through it.  Administering flu shots for 5 hours a day isn’t strenuous.  But having to get up at 5 am, running my husband to work, running Sunshine to school and then getting my own self to work is draining.

People take their energy and pain free lives for granted.  Seriously.

The energy required to get out of bed, put on clothes, find and eat something, getting your shit together and out the door is mind boggling.  Never mind having to get a first grader out the door.

But its working.  So far.  I’m just dead tired when I get home and vegetate till dinner.  Sunday (my only days off until the end of September) found me near comatose for most of the day.

I really didn’t need any energy for that debacle that was the Pittsburgh Steeler game.  When does hockey season start?

So now I’m in to week two.  I just hurt.  But its fibro hurt, not autoimmune hurt.  I’m so glad my parents have a garden tub.

It’s amazing how much stress is relieved when you don’t have to worry about when the lights will be turned off or if you are going to be evicted.  I’m living the high life with both cable tv (actually satellite), reliable internet access and food that doesn’t come from a Velveeta box.

And living with my parents at 31 isn’t that bad.  Right now.  They are sharing in the caretaking duties with Sunshine.  There are five tvs, so theoretically we can all watch what we want to watch at the same time.  I cook and I share those duties with my mom.  My dad and husband take care of the dishes.  My mom is helping with the backload of laundry.

The only “issue” is Miss Punkin (my cat) and her holier than thou attitude concerning my parent’s dogs.

Silvie is being amazing for a pit.  Meaning she hasn’t had my little cat for lunch.  Yet.

Silvie tries to be friends, goes up to Punkin and doesn’t get in her face or growl or anything.  But the second Punkin catches sight of Silvie, her hackles go up and she hisses.  And in the two plus years we have had her, I have seen her hiss exactly one time.

At least Punkin is emerging from under our bed.  When we first got her, she lived in our pull out couch for over a week.  I’d say that’s progress.

And Sunshine loves her new school.  She likes her teachers and she has friends already.  Of course.  My little social butterfly.

So today, things are good.

Sunday Funday!!

My husband has been counting down to this day since the Superbowl.

Now living with my parents, it is even more fun.

We would come over here on Sundays anyway, but now I have my stuff here and the ability to crash if I need to.

I survived my first work week.  I’m only doing 5 hours per day, but that is enough to kick my ass.

Trying to figure out if the fatigue is fibro related or autoimmune related.

I can tell the difference between the types of pain…sharp pains in my joints is usually autoimmune related.  The all over body ache, primarily in my muscles, is fibro.

The fatigue I’m feeling right now is slightly overwhelming.  It is taking extreme effort to do anything today.  My arms feel weighted, I feel like I’m walking in jello.

Also, I had a migraine from hell last night.

I’ll just blame everything on coming off of steroids.

I do get labs done this week, and I see the docs next week.

I have noticed an increase in floaters, but I’m not panicking yet.  I’m determined to wait it out until my appointment in October.

Time to get dressed up in front of the TV.  GO STEELERS!!

The conundrum of being a Steeler fan

Football Field on 40 Yard Line

As a born and bred Steeler fan, I don’t think I could let this day pass without making some derogatory statements about the Baltimore Ravens.  I think it is actually written in the membership agreement for the Steeler Nation:  thou shall make fun of Baltimore (and Cleveland, and the Bungles,and the Patriots) at all times.  (For evidence that the Steelers fans are actually a “nation” click here).

GO Steelers!!!

Today, I am split.  As  Steeler fan, it is impossible to cheer for Baltimore.  But, if the 49ers win, they will also have six Superbowl titles (for those who don’t care for football, the Steelers are the only team since the merger to have six Superbowl titles).

I do like Kaepernick as a QB.  His enthusiasm for the game is evident and he is a joy to watch.  That  boy is fast!!

I also have a soft spot in my heart for the 49ers, because Joe Montana is from Western Pennsylvania.  And one of my friends is a die hard 49er fan.

But if they win, the Steelers are no longer the King of Rings. They will have to share that title.  And that isn’t too fun. Perhaps it will stir something in the Steelers to actually make the playoffs next year.

And I really can’t cheer at all for Ray Lewis.  I did read the articles concerning his “incident” 13 years ago, and I’m not impressed.  It still amazes me to this day that NFL players always get preferential treatment in the justice system.  If you need more proof, check out the Steelers QB.  I still have a difficult time with that one.

The Baltimore Ravens aren’t as “exciting” as the 49ers.  Joe Flacco often chokes in big games.

This is a “Fighting Blue Hen”

But he is a fellow UD “fighting blue hen”, so my husband is firmly on his bandwagon.

And the “Har-bowl”, if I needed a reason to puke, that happens to be it.  Both are immature and throw tantrums on the sidelines.  Out of the two of them, I dislike Jim Harbaugh more, just because of his on-field antics.  At least John Harbaugh conducts himself with a little more decorum.

And I am absolutely THRILLED that Belichik will not be making an appearance in the Superbowl.  Even though it is quite satisfying watching the Giants beat the Pats (twice).  I have no respect for that man.  I didn’t like him and his attitude BEFORE “spygate” came out.

To make things a little easier, the Penguins thrashed the Capitals today IN Washington.  That is hockey for those of you who are uninitiated.
So there is my Superbowl rant. I just may have to cheer the commercials.  GO CONSUMERISM!!!

Attempting normalcy

I was spared the poison (methotrexate) this weekend because my immune system does not appear to be doing its job, as evidenced by a rash on my torso.  I thought without the side effects caused by the chemo, I could attempt to do normal things this weekend.


I have also been battling the cold that never ends.  And with above stated immune issues, my attempts at a normal weekend were thwarted.

My dad knows how I feel about my appearance these days.  I have gained weight, I have the typical steroid “moon face”, and I stumble about like Frankenstein half the time.  Not appealing when you are a newlywed (or any time actually).  My husband is amazing, but I still feel very self conscious.  My dad paid for my to go to my favorite hair stylist, the one who turned me into the most beautiful bride just a few months ago, for a “tune up”.  I cut my hair shorter than I normally would have just to make it one less thing to worry about.  It’s amazing how something as simple as a new haircut and style (and a wax of the unibrow) can make one feel so much better.

After the haircut, my husband and I went “little shopping”, that usually means less than an hour and for the essentials.  We have had to cut way back on what we spend, and we are working on scrounging up money for next month’s rent.  So our shopping expenditures were curtailed to the bare essentials.

Those two errands, three to four hours out of the house, I was exhausted.  Come home and lay down and don’t move.

Yesterday, laundry day.  We all finally got to the point where we HAD to do laundry.  Meaning we were all out of clean clothes.  Ick.  So now ALL the laundry in the house is done.  It is just not folded.  As of right now it is sitting on a table in my room.  Piled up and awaiting my attention.  Shit.

And the inevitable children’s birthday party.  I firmly believe that all children’s birthday parties during football season should be held on a Saturday or not at all.  Which reminds me..

When I was pregnant, I was sternly reminded that if I went into labor on a Steeler Sunday, I could expect to wait until the game was over to find transport to the hospital.  This from my parents and my husband at the time.  I knew they were joking. But I happened to go into labor on a Steeler THURSDAY, verses Cleveland no less, and was told to push her out before kick off.  I complied and my room emptied by gametime.  I watched the game with the newest member of the Steeler nation bundled next to me.

So back to the children’s birthday party.  My daughter was invited and of course wanted to go.  It was here in our apartment complex so no problem.  But I know how I look.  There are a few moms in the complex that know I have health issues.  This family wasn’t one of them.  But I took her anyway.  And stayed 3 hours.  The walk there (up to the pool area) is maybe two blocks in distance.  I was having difficulty with it.  My daughter had a blast, and I socialized with the neighbors.

And when I got home, I completely crashed.  Lights out.  So glad my husband was here.  I was knocked out for 3 hours.

I woke up in pain.  Joints, especially elbows.  I’m not sure why the pain is getting worse, I just know that it is.  Especially in my hips, knees, elbows and fingers.  Sometimes it feels like someone is smashing me with a hammer.

I try not to take pain pills.  I start with Tylenol and if that doesn’t work I have Tramadol.  But rarely to I use that.  I also use non-medicinal methods for pain.  Biofreeze helps, especially the roll on version.  Heat.  Meditation.  I use distraction a lot to take my mind off the pain (I read 2-3 books per week).

Because I slept so much during the day, I couldn’t fall asleep last night.  Read until 4 am.  It was a good book too.

So now my sleep schedule is screwy.  I’m heading back to bed.

I am trying so hard to affect a normal life right now.  Its just difficult when I can’t predict what my body will do.  I can’t predict the pain, the exhaustion.  I am told to try and push my limits.  I do that and I end up past the point of exhaustion.

Today is another day.  I will try again.  First I need more sleep.

A potpourri for a Sunday

My aunt pulled me aside last night to talk about the family curse — autoimmune disease.  She has RA and lupus, her son (the groom) has vitiligo.  She told me the basics of her story, how it took awhile for doctor’s to figure out it was lupus and RA.  She wants me to get a second opinion and see her rheumatologist.  She also told me it will be ok.  I needed to hear that from someone who has been through it and who has been dealing with autoimmune for 20+ years.  I will probably look into the second opinion.

Still in limbo with my job.

Steelers embarrassed themselves on Thursday and lost to the Titans.  So I will spend today watching games rooting AGAINST the other teams in our division.  But it might not be easy.  That means I have to root FOR Dallas (ewwwww) and for a tie (which is now impossible) in the Bengals v. Browns game.

The issue with Dallas.  Supposedly they have the #1 franchise according to net worth.  People just love jumping on that bandwagon.  They have the immense stadium (I’ve been up there, not inside, just drove around) and it is impressive.  As per my husband, people become fans of the Cowboys in his neck of the woods only because they hate the home team (Eagles).  Apparently they have this grotesque song and dance ” Ain’t no fan like a Cowboy fan”.

Now I am from Texas.  My family has lived here for their entire lives.  I have met many Cowboys fans who have lived in the state of Texas for their entire lives.  No one who has lived here for their entire lives have ever heard of that stupid song and dance.

I just don’t like Dallas because they claim to be “America’s Team” without any input from America.  There was no vote.  No consensus.  And they beat my Steelers in Superbowl XXX.  I really don’t like Tony Romo and truly enjoyed their performance against Chicago two weeks ago on MNF.

I guess one of the reasons I don’t like the Cowboys is that their fan base is truly pathetic.  My husband, the Eagles fan, knows more about their history, their current line up, their strengths and weaknesses than the average dozen Cowboys fans put together.  Their fans are all gung-ho when they are winning.  When they suck, they abandon them.

In Pittsburgh today you will here a multitude of suggestions that Tomlin should make to the offense, defense (and I bet one of them is Ike Taylor) in order to avoid a repeat of Thursday.  I know for a fact that in Philly (and in my home) Eagles fans are clamoring for the head of Mike Vick and throw in Big Red for good measure.  But not so in Dallas.  They just shrug their shoulders.  They don’t know their o-line or their d.  I’ll bet some of them still think that Troy Aikmen is still their quarterback and he is still throwing long bombs to the Playmaker.

Enough football.  Let’s talk about why I will not see #87, #71 and #29 on the ice this year.  The NHL is already by far dead last in popularity of all the professional sports.  I honestly think soccer is starting to climb up the ranks in popularity and will outrank the NHL if this lockout shit continues.  I am a huge hockey fan, and of course my team is the Pittsburgh Penguins.  I love Marc-Andre Fleury and Sidney Crosby and Evgeni Malkin.  And, surprise, surprise, my husband is a Flyers fan.  I. HATE. THE. FLYERS.  I don’t mind the Eagles.  But since the Flyers are in the same division as the Pens, and they see each other 8 times a year, it tends to get messy here at home.

If the Flyers weren’t so filthy and out for blood, I think I wouldn’t mind so much.  But they definitely have it in for Sid.  Can you say Hatcher?  I actually ban Flyers objects from my home.  Seriously.  He has one shirt and thats it.  Phillies I’m ok with, Eagles, fine.  No Flyers.  Ever.

But I will miss my hockey.  And it doesn’t exist down here.  They do have the Texas Stars, the AHL affiliate of the Dallas Stars.  And their team is actually pretty good.  Its hysterical going to games with a bunch of Texans who know nothing of the game.  They think that icing is when the player sprays ice.  And most of the spectators are there for the cheap beer, so it gets pretty interesting.

Oh and its ZOMBIE day!!!

My bonus child hooked me on zombies a few years ago.  I have been a huge fan of  The Walking Dead ever since.  I missed a few episodes in the middle of season two, I think a lot of people did.  It was during that “we are on the farm looking for the little girl and we are just going to stand around and be lethargic for a few episodes” period.  But boy, did the shit hit the fan at the end.

I’m really looking forward to Michonne.  I’m hoping for certain characters to be killed off.  And that Rick’s backbone remains intact.

So as of right now, mentally and emotionally I’m feeling pretty good.  I delayed the injection of poison so I could enjoy my cousin’s wedding reception, so physically I am glued to the couch and have that all too familiar lead in the limbs feeling.  Slight nausea.  And exhaustion.  Due for a nap pretty soon.  I have been know to fall asleep at the laptop.  My head feels disembodied at times.  Fun.

Back to resting.

Four more years!! Four more Years!!

Thank you Michael Vick and the Philadelphia Eagles for granting me bragging rights in my household for at least the next four years, or until the Steelers play the Eagles again.  The only way they can play each other again is if they meet in the post season (Superbowl) and we all know how the Eagles perform in the NFC championship games.

My marriage is intact, mainly because my husband is awesome.  He is a rabid fan, but ultimately he knows it is just a game.

We did watch the game together, in the living room, although on two different couches.  It was as I expected, both of us exclaiming on each call, either cursing or whooping.  My poor confused child.  She spent the game in the other room, rotting her brain on Spongebob.

At one point she did come in and tried to cheer for both teams.  And then I told her that the Eagles and the Steelers combined forces for one season and became the Steagles.  That made her happy and she marched through the apartment chanting “Steagles! Steagles!”

And don’t worry about her hearing curse words.  She spent at least part of her young life in Pittsburgh.  She is well versed with words she can and cannot say by this point with her grandparents and parents all from the northeast and all rabid sports fans.

As for my neighbors, the ones below us must be deaf.  Or maybe they weren’t home.  We were so loud, we could have awaken the dead.  Each play.  Either “GOOOOO GOOOO GOOO!!” or “GET HIM!”  (thats me) . My husband likes to yell out helpful hints like “TACKLE HIM, JUST WRAP HIM UP” or “WHY ARE YOU JUST STANDING THERE, DO SOMETHING”.  My husband likes to emphasize his point by jumping up and down.  Repeatedly.  And running up to the screen and pointing out available receivers and clear lanes that the running back should have utilized.  As if Michael Vick or LeSean McCoy can see and take advantage of his wisdom.

At the end of the day, my Steelers were victorious, barely, we made a wonderful dinner together, and my husband is demanding that someone is held accountable for the debacle he witnessed.  I’m sure I will hear more about how my team is the “Yankees of football” and how he has yet to “see a parade” featuring his beloved Eagles.

I’ll offer membership to join the Steeler Nation, like my dad did when he defected from America’s team 17 years ago.  My husband will politely decline and then go on a tangent about how they are always the underdog and how it is always noble to root for the underdog.  I will refrain from any jokes about Michael Vick and dogs.

Onward to Thursday!!  Go Steelers!!

Are you ready for some football??

I want some cookies!!

I have posted before about my religion of Steelerism. I don’t have a choice, I have been indoctrinated since birth. And so has my husband. He is a Philadelphia Eagles fan. Even more hardcore than I am for the Steelers. While I love watching football, and my love of the sport has only deepened in the three years we have been together, I am not the walking sports encyclopedia that he happens to be. My husband can quote stats and plays from years ago. He remembers vividly a play from the Eagles 2005 season and I can’t remember who was even ON the Steelers roster in 2005. Its not that I’m not a fan, I’m just not on that level.

He is the type of fan who dresses up to go to the games, or even to sit on the couch. I mean face paint, the hat with the dreadlocks in his teams color and a cape. He calls it being  “Superfan”. During the games, he is so animated. With each play he can be counted on to jump up and down, cheer, or curse.  I pity our neighbors. And being that our town only worships the Longhorns, they might not understand why so much noise is being made when the Longhorns aren’t on the field.

Which brings me to this weekend. Steelers v. Eagles. We have lived through this before, in 2008. And we were unhappily married to other people at the time. But it didn’t stop him from calling me nearly every day that week to talk smack. And then calling me at halftime, and then after the game. It was a loss for the Steelers, and Ben Rothlisberger was sacked many, many, many times. My husband isn’t here right now or else he could give me the exact score of the game and how many times Ben hit the dirt. When he brings THAT game up, I routinely point out that the Steelers went on to win the Superbowl that year. I then go on to point out that the Steelers have SIX Lombardi trophies, while the Eagles have none. That usually ends the conversation. Unless he is particularly ornery and shoots back “Well, the Eagles have won championships before the merger”. Yeah, like that counts.

Anyway, we have decided to watch the game together. Due to my health issues and the fact that we have no money to send him to the bar. My daughter will be present, which should put a damper on any loud cursing. I may just watch the game in the bedroom and we can separately yell at the TV.

But it should be interesting.  We will be yelling with each play.  One will be yelling positively, one will be yelling negatively.  My only hope is that the police are not called.

I will post an update tomorrow after the game.  If I’m not in jail.  GO STEELERS!!