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.

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!!!

Exhaustion, nausea and pain…oh my!

I guess it was a combination of events that did me in today.

1) I went out to lunch.  In public.  For two hours.

2) I went to a wedding.  In cowboy boots, about an hour away from my house.

3) My dose of methotrexate went up by 2.5 mg (because the uveitis in my left eye isn’t clearing up).

4) And I helped to clear the way so that newer furniture could be moved into my living room.

Probably doesn’t sound like much to the average person, but to me, it resulted in severe pain and sleeping for 13 hours today.  And I will probably go back to sleep earlier than intended tonight.

I try so hard to live within my new reality.  But even when trying to live within those boundaries, I am still met with exhaustion and pain, it can  be disheartening.

I don’t see anything I could have done differently with lunch.  My cousin and his wife are expecting a baby, and our family is having the shower for them.  I am in charge of decorations.  I made my own wedding bouquet (before my hands rebelled in pain), so I feel fairly confident I can do a few nice things for the shower.

Yes, I could have worn more sensible shoes to the wedding.  But it was an outdoor wedding, and the ground was soft, and heels weren’t a much better option.  And my wardrobe is severely limited these days due to the weight gain brought on by the steroids.

Both being out in public for lunch and a wedding in the same day?  Now that is apparently asking for too much from my poor body.  We were home at 9:30, I was in bed by 10:30.  I didn’t party all night (ha!), I didn’t drink alcohol.  I didn’t even get to dance with my husband (I danced a little bit with my daughter).  Still, my body hated it.

Then I came home and gave it more methotrexate.  That’s where the nausea came in.  No vomiting, just more sensation of wanting to throw up all those wedding treats.  Yuck.

And Sunday.  Day of rest, right? Ha!

A friend of ours has recently downgraded to a smaller place, and was getting rid of her couches, which were nicer than our mismatched, tore up, used as a kitty scratch post, set.  So we had it all set with trucks and friends and the owner of said furniture.  Of course I couldn’t help with actual lifting.  I helped with clearing my old bookshelf (which had to go), moving my coffee tables, cat and child wrangling.

Most days after I do a dose of methotrexate, I do not move.  It is near impossible.  I pushed through that sensation of concrete, and literally had to order my limbs to work.  I stumbled around a lot, grabbed on to walls, but it got done.

And this morning.  My daughter’s school bus gets here at the crack of dawn.  But now it was at least light outside, so I didn’t feel like I was sending her to school in the middle of the night.  I woke up for 20 minutes to help and get her ready and then crashed once she was at school, and after I took some tramadol.

And I didn’t wake up until 2 p.m..  And I woke up in pain.  A hot shower helped to take the edge off.  I detest taking any kind of pain medication stronger than Tylenol when I am responsible for anything (my child, patients, etc) so I am currently waiting on my husband to get home from work tonight at 9 p.m. so I may take another tramadol.

Lately, the pain is in the joints.  And I have been off of the omeprazole for nearly a week now.  Pain in my knees, hips, shoulders, elbows and fingers.  Especially in my hips.  This morning when I was contemplating writing a post, I thought it impossible.  The pain was that bad.  It’s starting to get that way again.

I would like to see my  husband during my waking hours today.  But seeing that his Philadelphia Eagles are once again putting on a stellar performance, this time in front of the nation on Monday Night Football, maybe that isn’t such a good idea.

So, new lessons learned.  It’s more of a combination of things that contribute to the pain/nausea/exhaustion triangle.  And once again, “pushing through it” might work well for fibro (even then its iffy), but it will destroy me with this disease.

Like I’ve said in earlier posts, it took me a good three years to learn my limits with fibro.  Learning them the hard way.  And I still hold out that hope that I will miraculously get better.  That I will wake up one morning and have energy, not be in pain, and be able to see and think clearly.  I have been holding on to that hope for almost 5 months.

Positive thinking:  this  election season will be over tomorrow. Hopefully.  We all remember what happened 12 years ago.

Wait, that was supposed to be positive.  Ok, well, yesterday while cuddling, my husband and I were talking about how happy we are together.  Even though it seems like things are caving in on us.  We barely made rent, we are having difficulty purchasing food, things are pretty dire right now.  But we were able to lay there and talk about the positives.  That we love each other, we are happy together, our kids are healthy, we have a roof over our heads, and that we do have food to eat, even though it isn’t 100% what we would prefer to eat right now.

Most couples crack in times like these.  My previous marriage failed during a time like this (actually in a more stable time than this).  I am so fortunate to have him as my partner.  Yes, it gets dicey, but at the end of the day, we can count our blessings.

That is a big positive.

 

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.

WRONG!!

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!!

Sunday Funday

I was born a Steelers fan.

I remember as a child every Sunday in the fall and winter, my mom watching Steeler games.  My dad was a Dallas fan until his conversion after the Steelers lost to the Cowboys in the Superbowl in 1995.

It sounds like a religion, doesn’t it?

Well, it is.

I lived in Pittsburgh for 25 years.  It is unlike any other city in the nation when it comes to sports.  Pittsburgh is somewhat isolated when it comes to sports.  There is no other big city close to it that competes for loyalty of the fans.  So if you are born there, grow up there, even live there for a period of time, you eventually succumb to the black and gold fever.

And since all the major sports teams have the same color scheme, black and gold, it makes it much easier and cheaper, to show Pittsburgh pride.  It is not uncommon to see a Steelers shirt worn to a hockey game.  And visa versa.

Year round, you will see people wearing black and gold.  Year round people will talk Steelers football.  Football is numero uno.  You can walk into any bar, anytime of year and talk football.  There could be a serial killer stalking children in the city, but if Troy Polomalu is injured, it will lead the news.

When Ben Rothlisberger crashed his motorcycle? Dear God it was insanity.  It warranted a break in regular news programming.  For hours.  I kid you not.

But the way the city comes together is wonderful.  During playoff time, if the Steelers are making a run, it is so wonderful to see all that black and gold, all the signs, the songs.  That is one thing I miss being here.

I get so excited when I see a Steelers logo on a car or someone wearing a Steelers jersey down here.  Its like a beacon calling me to the good memories of Pittsburgh.

There are other cities like Pittsburgh when it comes to sports.   My husband is an Eagles fan.  I truly did not entirely believe the stories he told me until we had a recent visit to his hometown.  The local sports talk radio station is on 24 hours.  There are people that call in 24 hours a day to talk sports.  We happened to be listening at 1 am coming home from a family function.  They were debating the Eagles last season.  It was mind numbing.  They can really fill 24 hours a day with sports talk?

And yes, all the stories are true.  The Vet, the batteries, booing Santa.  There was even a fan that brought a flare gun to a game and shot it on to the field during a Monday Night Football game.  Apparently the Eagles were stripped of MNF games for a period of  time after that.

And the famous 700 level.  My husband tells me wonderful stories about those fans.  Good Lord.  No wonder they needed a jail in the bowels of the stadium.  And my husband has had the chance to visit said jail when his former brother in law started a fight in the stands.

So now we live in Texas.  In Austin, the Longhorns dominate.  It is a sea of burnt orange.  The Dallas fans are here, but they aren’t as passionate as we Steelers and Eagles fans.  My husband knows more about the history of the Dallas Cowboys and their current roster than most Cowboys fans.

My dad has NFL Sunday Ticket, so like always, we gather on Sunday to watch our games.  If my husband’s game happens to be on during “our” game, he watches in another room.  The house echos with alternating cheers and jeers.

Fantasy football is another post for another day…