Day 14

Memories:  Been to any concerts?

I absolutely love live music.  I haven’t been to many concerts, not like my husband, but I’ve been to a few.  My favorite live act is Pearl Jam.  They are incredible live.  I’ve seen them at least three times.  I’m pissed I couldn’t afford to see them on this latest tour.

My favorite concert memory is attending a Metallica show in 1999 with the man who is now my husband.

He was visiting me, and he had just seen Metallica in Philly the week before.

He heard that they were in Pittsburgh, and wanted to see if we could get lawn seats to the show.

We ended up in the front row.

In the middle of the show, a thunderstorm rolled through the area.  It was amazing hearing (and seeing Metallica) and have Mother Nature put on a show as well.

Even though I was there with my boyfriend at the time as well, that show holds special memories for me.

And my boyfriend at the time and I are still friends to this day.


Just like my blog name states:  true life is stranger than fiction.

I could NOT make this shit up.

Also, my username (and address for this blog) is atxviapgh.  ATX is a slang term for “Austin, Texas”, and PGH is commonly known as “Pittsburgh”.  I came to live in the Austin area after living 25 years in Pittsburgh.

Sometimes people ask why I choose to move 1,500 miles from everything I ever knew.  Friends, Family.  Well, my reasons for leaving (at least one of them) was painfully affirmed this past summer.

In a few words…my mother’s family.

Now, I have been a nurse for 10 years.  I have worked in ICU, in economically disadvantaged areas, as a nurse at a juvenile detention facility and as a hospice nurse.  In my decade of nursing, I have never, ever come across a situation so fucked up, so vile, so reprehensible as the current one with my mother’s family.

My grandfather died suddenly in June.  I couldn’t go to the funeral because of my financial issues.  In a way, I’m thankful, because I haven’t seen the majority of my mother’s family in 5 years.

I recall clearly the Christmas after I was diagnosed with fibromyalgia.  I could barely get out of bed, but I dragged myself to my grandparents to celebrate with the family.  I respectfully declined helping with dishes after dinner, mainly because I was in so much pain and could barely move.  My lovely aunts and cousins took it upon themselves to seek me out and berate me for being “lazy”.  One aunt even said in a baby voice “is the poor widdle baby too sick to help?”

From that point on, I limited all contact with that part of the family.  For the remainder of my years in Pittsburgh, I would rarely see these family members.  I would visit my grandparents when I knew no one else was there.  Even after Sunshine was born, I still limited contact.

Granted, that wasn’t the first time something nasty had happened with my relatives.  I remember one year when one aunt got into a fist fight with another over NASCAR.  I’m not kidding you.  NASCAR caused fists to fly at Christmas Eve.

So back to the present day.  I always knew that all hell would break loose once one or both of my grandparents passed on.  Unfortunately my grandfather went first and left my grandma without care.  My grandma is really sick and has dementia.

My mom has spent the last three weeks in Pittsburgh.  Two days after she arrived, my grandma fell and broke her hip.  My mom has been there for her, helping the transition from hospital to nursing home.

My mom was horrified to find out that a few days after my grandfather passed away, my aunts raided my grandma’s jewelry box.

Now, my grandparents grew up during the depression.  My grandma was one of 12 kids living in the three bedroom apartment in the Polish Hill section of Pittsburgh.  After they got married, my grandfather worked as a draftsman at Westinghouse and was able to “spoil” his wife.

So my grandma had a pretty extensive jewelry collection.  She told me time and time again throughout the years that she had written out “who gets what” when she passes.

My aunts decided to circumvent this and took it all for themselves.  While she is still living.  The cross that my grandma wore everyday…her last gift from my gone.  And she is asking for it.

This makes me sick to my stomach.  I can’t believe that people who share my genetic material are so vile.

In addition, my cousin is now squatting at the house my grandpa built.  She changed all the locks.  All of her own volition.  She refused to let my mom in when my grandma needed more clothes at the nursing home.  Apparently she was instructed (by my evil aunts) to call the cops if my mom ever showed up.

I’m not kidding.

Yes, there are decades of bad blood here.  But I have seen a death in the family  bring people together.  I can’t believe this is happening to my own family.

I am horrified…disgusted.  But grateful.

Yesterday, in the great state of Texas, there was a family picnic at the lake.  My dad’s side (my dad is now talking to me again) was there.  I’m talking, aunts, uncles, cousins, babies.  Everyone.

No one got into a fist fight.  No one put anyone down.  No one got into a screaming match.  It was a wonderful day.  These people not only love me and have been supportive, they accept my husband and my stepson.  It was amazing seeing the contrast between what my mother is going through and the amazing day I had with family yesterday.

This side of the family isn’t perfect.  People have their quirks.  But it is the real sense of family that I have always craved and really didn’t have while growing up.

I’m grateful that my daughter doesn’t have to see her family get into fistfights.  She isn’t scared of one person or another (like I was of my aunts as a child).  She feels loved, respected and loves my family in return.

I would like to also point out that both of my father’s parents have passed on.  My grandmother in 2004 and my grandfather right after Christmas 2011.  No one “raided the jewelry box” no one moved to my grandpa’s house and changed the locks.  There were no screaming matches, no threats.  My aunt, uncle and father worked together to sell grandpa’s house, and upheld his will as to what to do with his property.

My mom returns from Pittsburgh in a few days.  I’m going to hug her, tell her its alright, and that she’s 1,500 miles from those assholes.

My grandpa would be ashamed.


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!!!

Bio Dad

© Squareplum | Stock Free Images & Dreamstime Stock Photos

© Squareplum | Stock Free Images & Dreamstime Stock Photos

I will write this post only once.  It is not a subject that I need to revisit consciously, although I frequently revisit it subconsciously.

I have posted before that my husband is not Sunshine’s biological father.  We split when she was 2, mainly because he “fell out of love with” me when I got sick the first time.  See my post about the issue of chronic illness and marriage here.  As our marriage continued to crumble, I began finding out more and more information that screamed to me “you have to leave, this is not a good situation for you or your child”.

I got on a plane to Texas with my toddler and never looked back.

Its years later, and to this day, I have no regrets.

It is now starting to affect my daughter, however.

After informing Sunshine’s Dad that I was not returning to the area, things got nasty.  Mainly over Sunshine.  He never once attempted to talk me into returning.  He wanted physical custody just to spite me.

After a few months, we did work out a custody agreement.  I began trying to be what I term “a good co-parent”.  I set up a Flickr account so he could see the copious amount of pictures that I take of Sunshine.  I set up a Skype account so he could talk to her “face to face”.  I would call or text any time she did something funny or adorable.  I tried to keep him in her life as much as possible.

So far, she has visited her biological father a total of three times since we left.  For a few days.  His choice.

My second husband has been in my daughter’s life since she was 3.  I have been friends with him since we were teenagers.  I was so concerned about letting another man in her life, but he has been amazing.  He is her dad.  He loves her like she is his own.  There is no difference in the way he treats her in comparison to his son.  And I reciprocate in kind with my bonus son.

Things were going pretty well this year with Sunshine and her “real” dad.  She visited him in the spring (I am tremendously lucky that my mother volunteers to take Sunshine back to Pittsburgh any time she returns to visit her parents).  She met all of her stepsisters (she has three stepsisters and one half sister).  She had a great visit.  We were planning out a second visit in August when he fell off the map.  Completely fell off the map.

It is now six months since I have had any contact with the man.  No texts, no email, no phone calls, no snail mail.  My daughter was physically in his area as planned, and he refused to answer my calls, emails or texts.  And I had to deal with her questions when she returned.  Trying to answer the question “why didn’t Daddy want to see me Mommy?” is something I have been dealing with ever since.

And as the months have rolled on, he has missed her first day of kindergarten, her birthday, and Christmas.  The questions are harder to answer.  She is growing and learning and figuring out the world and her relationship to it.  This situation is getting worse.  It is now affecting her school performance, as I received an email from her teacher this week.  Apparently Sunshine got into an argument at school with a girl in our apartment complex.

It arose from the other girl (who’s parents aren’t together as well) telling Sunshine that HER daddy was keeping her for the weekend.  When talking to Sunshine about this, my heart broke.  Sunshine is never one to make fun of people or to get into arguments, but this really hit home for her. When this other girl was discussing her plans for the weekend with HER “real” Dad, Sunshine got upset and started yelling at her, saying “I don’t like you anymore, I don’t want to be your friend”.  Her teacher was shocked and wrote “I have never heard her say she doesn’t like someone, she is always so friendly”.  Grrr.

My entire family tells her that its not her fault.  That her bio dad has made this decision and it has nothing to do with her.

His cell phone number has been disconnected, as is the one for his wife.  I have sent two snail mail letters via certified mail.  I know the man is alive.  His Facebook has also been updated recently.  I continue to get child support, but I think that is because he is on unemployment and it comes out automatically.

I’m angry.  It was bad enough what he did to me, but to do this to Sunshine?  She doesn’t understand.  She doesn’t know about the ways of adults.  All she knows is that she went up to visit him, and he didn’t want to see her.  And that he hasn’t wanted to talk to her in six months.

It is difficult to talk about anything pertaining to “Pittsburgh” or her being a little baby, because it makes her think of him.  We still have tons of family there, including her great grandparents and her uncle with which she has close relationships.

As much as her bonus daddy bends over backwards to make it clear to her that she is loved, and that she has a Daddy, he just didn’t contribute genetically, she is too young for such sentiments.  I suppose in time she will understand, but the six year old Sunshine repeatedly asks me and her bonus Dad about her bio Dad.  She truly feels that she did something wrong to make him mad and not want to talk to her.

Resolution?  I just want an answer to this behavior.  If he wants to officially sever ties, then I’ll get the paperwork up to him ASAP.  It would be extremely difficult for him to decide now to start their relationship again.  My only hope is that this doesn’t have a lasting effect on Sunshine.  That she learns that blood bonds and behavior bonds are different.  That her bonus Dad loves her and always will.  That words are backed by actions, and the fact that her bonus Dad is there everyday for her means a hell of a lot more than what her bio Dad is currently doing.

My husband sat down with her today and said “I’m sorry that your Dad is being like this.  It is not your fault.  Me and your Mommy love you very much no matter what.  I’m not leaving, I’m not going anywhere”.

Hopefully that sinks in.  I just hate knowing that his (bio Dad) lack of interest is upsetting her.  That she probably thinks about it more than I will ever know.

I know I made the right decision.  I will never regret removing her from a toxic situation.  I have moved her down to a more healthy area of the country.  She is active, smart, thriving.  The schools are better, there is virtually no crime here, and we enjoy a higher standard of living in comparison to where we were living before.  Between her bonus Dad and my Dad, she has significant love and attention from the opposite gender.

However, when these issues arise, I will always feel a blast of anger.  I will always feel helpless to comfort my child.

I have tried to let her know that any feeling she has is ok.  And that it is ok for her to be angry with him.  But it is not ok to get into arguments with other children because their situation is different.

With 50% of all marriages ending in divorce, I know there are resources out there.  I might have to start looking into them if this continues.

Sorry for this rambling post.  I am just so angry right now and writing it down may help.  I just love this child so much and it kills me…literally kills me…to know that he is hurting her like he hurt me.

End of post pertaining to my ex.  He isn’t worth all this time and energy.  I will not post on this subject again except to update it, if that ever happens.

Thank you.

Winter is not my friend

Yes, I know, Texas doesn’t have a real “winter”.

Growing up in Pittsburgh for 25 years, I am acquainted with real “winter”, and that is why I despise it.

I know people with autoimmune, chronic pain, osteopathic conditions are usually cold intolerant.  And I am no different.

I guess it began in high school.  I went to school in a “modern” building with a closed in plan.  It was build in 1970.  Basically, no windows except for these 1 foot in width, floor to ceiling “windows” that could be tilted to “open”.  The walls were cinder block.  The heat regulation in that building was terrible.  I remember wearing my winter coat, gloves and a hat in class.  Sometimes you could even see your breath.  In chemistry class we would light the Bunsen burners for added heat. On other days it would be a tropical jungle, although those days were few and far between.  We would complain to the office, but they would say that they couldn’t do anything about it.

We also had to take swimming class.  In winter.  In that building.  I wonder if my gym teacher ever looked into the veracity of my excuses of having my period, everyday, for a month.

The house I grew up in was very old, build at the turn of the 20th century.  Very poor insulation and drafty.  So I am well acquainted with freezing all winter.

I remember visiting Texas once December.  I was flabbergasted that my cousins were wearing shorts one day.  In December.  Completely foreign to me.  In Pittsburgh, all shorts, short sleeves, bathing suits (unless you were doomed for gym class) were packed away in September.  But apparently in central Texas, you can pull those out year round!

In my late teens, early 20s I noticed the cold intolerance thing getting worse.  Even out of high school, I was always cold.  Its just the way I was.  I always needed an extra blanket on the bed, warm socks, warm pjs.  And I do get this way in the summer too, if the a/c is blasting.

What does it actually do?  It makes me hurt more.  My joints ache.  They are stiff and sore.  I’m slower.  My feet and hands and fingers won’t work properly.  It normally takes me awhile to get warmed up anyway, so if I do go out, I have to come in and get under blankets to physically warm my body and joints.

So with my diagnoses, my history, I have been miserable the past few days.  Yesterday had a low of 25 and a high of 59 (that is in *F).  Ick.

My husband loves it.  Says its “invigorating”.  Right.  If you’re a polar bear.  Give me my snuggie.

The other side

Dying at 30.  That shakes me to the core.

Another one of my high school classmates is slipping away as I type this.

For Qui

She has battled leukemia for over three years.  But its not the leukemia taking her life, its an infection (e. coli) that gained entrance via a bedsore, and due to her compromised immune status and all the underlying issues, it spread rapidly and caused septic shock.  Now the infection is in her brain and will soon spread to her lungs and heart.  All aggressive treatment has been stopped and they are “making her comfortable”.

I know what all of that means.  I know what is going on right now.  I’m a hospice nurse.

Although I am 1500 miles away, I can feel the pain of the community.  My best friend from childhood, lets call her Pooh, went to see Qui in the hospital yesterday.  Again, I flipped into nurse mode as I prepped her before she went in, what she might see, what she might not see, why Qui may not be getting tube feedings or fluid, why she may be talking funny.

A year ago, I was doing the same thing, only it was my family doing the hospice dance.

My paternal grandfather had a series of unfortunate health events last year.  It was one catastrophe after another.  At 80 years old, he insisted on living alone and living 5 hours away from his kids.  Yes, he had some family nearby, but not the sort that would religiously check on him.

A fall caused a brain bleed and required brain surgery early in the spring.  He came up here for rehab and stayed until late summer.  Then he insisted on returning to his home, and living alone.

He had a massive stroke in October.  Brought on by a completely unnecessary medical procedure.  Luckily, my aunt was staying with him at the time, or who knows when someone would have found him.

They attempted to rehab him from the stroke, but it was futile.

I was the one visiting the day the doc came and suggested hospice.  I called my dad, he called his siblings.  I was there for that meeting.

It is no fun being on the flip side of the hospice coin.  Suddenly, the doctor is giving you the speech that you have given to so many others.  Words like “comfort” and “end of life”.  Suddenly, its real.  You will lose a family member.

I have always thought that hospice was a gift.  You get a chance to say your goodbyes.  You can have “closure” and say all the things you wanted to say before someone passes.  Whereas in sudden death, all of that is left unsaid.  Its not always like that.  In my grandfather’s case, he wasn’t exactly coherent most of the time.  He couldn’t reply to questions, he couldn’t carry on a conversation, and he was extremely confused.

He made it difficult.  He lingered for six weeks.  And in those six weeks I think I aged about five years.  As the family hospice nurse, I was expected to know everything: “can we feed him?”, “can we give him this medication instead?”, “why is he making that face?”, and the worst one “why hasn’t he passed yet?”

He couldn’t eat because the stroke affected his swallowing ability.  Everything he ate dumped directly into his lungs.  But he was confused and thought we were torturing him.  He told family from out of town that we were starving him.  Then we figured out that he didn’t want to “eat”, but just wanted a “taste”.

He pushed my dad and uncle away and doted on my aunt.  That was much like his entire life with his children, but seeing it at end of life was difficult.  I have seen it plenty of times in my patients, but in your own family, broke my heart.

Family I had never met before came in from all over Texas.  I heard stories about my grandfather and grandma, saw pictures.  One second cousin told me that my grandpa was her inspiration to go to college and make a better life for herself.  So many mixed emotions for me.

Working all day with my own patients, trying to juggle texts and phone calls from my family during the day regarding my grandfather, and visiting him at night just took its toll.  I stopped visiting my grandfather so much.

I had said what I needed to say to him prior to a trip I took with Sunshine for her birthday to Disney.  I was at peace.  I figured if he passed while I was away, I would be ok with it.  He didn’t, but after I had made my peace, I visited less frequently.

I saw him the day before he passed away.  By this point, he was sleeping 20 hours per day, essentially a light coma.  He would talk about my grandma being present (she passed in 2004) and smelling her perfume.  At times he thought that I was her and talked about her beauty.  Again, I have seen this many times in patients, but experiencing it from your family is amazing.

When it was time, he declined rapidly.  We received a call from the nursing home that he had an “event”, and he was found with labored breathing during morning rounds.  They felt like this was it.  Using my experience, I did a quick assessment and confirmed their suspicions.  We called his hospice nurse (of course I wasn’t assigned to him).  And everyone who could, made it to his room.  We shared stories about his life.

My head was on his chest when he passed away.

I gave the eulogy at the funeral.

I know what Qui’s family is going through.  I know it too well.  Just sitting there by her bedside, watching each breath, counting respirations.  Looking for any sign that she is slipping away.  The odd sense of anxiety, wishing that it would be over, but not wanting her to go.  I call it the “death watch”.

Qui kept a CaringBridge website to update her MANY friends and family during her battle.  Her last personal entry brought me to tears when she wrote that she knows that she is dying.  I have always wondered how a person can deal with that kind of news.  I worked with terminally ill patients for years, yet I have never asked that kind of question directly.  How can someone process that they will no longer be living?

Facebook is humming, Qui took full advantage of technology to talk about leukemia and bone marrow donation.  She will leave a legacy behind.  So many people learned about cancer, leukemia, bone marrow transplantation because of her.  She will live on.

A case of the “Mondays”

Feeling like this today..

It’s not that I’m on the corporate “Monday” schedule like I used to be. I’m just not feeling too fantastic this today.

Methotrexate on Friday evening (well, early Saturday morning).  Vegetated ALL DAY Saturday.  And yesterday I felt  the effects of the methotrexate, but I kinda pushed it.  Sunshine returned from Daisy camp with my mom and we spent almost the entire day at my parent’s house.

I actually cooked dinner for everyone yesterday.  It wasn’t a 7-course feast, but it was a decent crock pot meal.  And it was edible, and actually good, and no one has died from food poisoning.  Yet.

So, again.  Here I am on a Monday, feeling like a train has hit me.  This is starting to be a pattern.  Veg after the med, feel ok the 2nd day and push it, feel like crap the 3rd and sometimes 4th day.

Grrr.  I wish I had more balance.

But on the bright side, the second day is when my daughter is home….

I puked with the methotrexate this week, and had some pretty bad nausea yesterday as well.  I don’t like that.  It happened in the beginning when I was starting the med.  So I don’t like this side effect just reappearing.  On Saturday, I could point to the dinner we were having, salmon.  That last bite just didn’t quite make it down.  But yesterday morning?  No excuse.  Just wave after wave of nausea.  No puking though.  I hate puking.

Pain?  It’s ok.  Gets to the upper ranges in the morning and especially at night.  This morning I tried to kneel to accomplish something for Sunshine, my knees felt like they were going to explode, like they had fluid in them, or that the joint wouldn’t hold.  Sometimes they feel like they are going to give out from under me.  I don’t know if this is a steroid related thing or a disease related thing.

The joints in my hand occasionally throb.  I massage them and it usually goes away.

Fatigue?  I’m halfway to nodding off right now.  I want to make sure I’m in my bed when that happens.  Sleeping on the couch definitely increases pain to my back and hips.

I have noticed improvement in that I feel better as the weeks go on.  Almost normal.  But actually taking the med and the immediate side effects…I hate.  Again with the catch-22 bullshit.

I see my aunt’s rheumatologist tomorrow for a second opinion.  I don’t know where I’m at in thinking about it.  Part of me wants him to find a completely different diagnosis, one that is more easily treated with chocolate or something.  The other part wants me to have him just say “no, this is sarcoid, you can expect x,y,and z to occur, your doctors are doing the right thing”.

Its not that I don’t like my current doctor, I do, I’m just scared that they are missing something.  The number one thing I miss about Pittsburgh (other than my best friend), is the top of the line medical care.  I had an amazing neurologist.  Awesome pain specialist for fibro.  My internist was incredible.

Not that the medical care down here is subpar, its just that there is no medical school here.  Perhaps it is also that my parents worked in the medical field in Pittsburgh for eons, and they knew which doc to send me too.  And I also had my own little cliques through work that I could ask for referrals.  I don’t have that here.  I can only go by word of mouth from family.

Hopefully, family is right on the money.  Let’s see what tomorrow brings.


It’s coming for you!!

As I write this, I’m looking out the window at gorgeous weather. Sunshine, 70s and a light breeze. Will be in the low 80s the rest of the week. So obviously I’m not in the path of Hurricane Sandy.

I grew up in the northeast, Pgh to be exact, and I have tons of friends and family in the area. My bonus child and newly minted in laws and extended family live in Delaware. So I am keeping an eye on this storm.

I’m mainly concerned about my bonus child. His mother isn’t the brightest crayon in the box, and tends to panic or might get caught up in watching movies all day and not heed any warnings. So a bit of anxiety here for my husband and I. We call my bonus child every so often for updates.

I remember blizzards when I was a kid. 1993 I had a sleepover during that major blizzard. My parents were very concerned that 10 little girls were snowed in with them. But their determination (and a 4×4 truck) ensured that everyone made it back home that day.

I don’t miss the weather in the northeast.  At all.  I don’t miss the cold, the rain, the snow, the sleet, the ice.  Nor the possibility of things like this happening.

Yes, Texas has its fair share of crappy weather.  More of the “sudden” variety: tornadoes, severe thunderstorms, hail the size of grapefruit, flash flooding, wild fires.  It has snowed twice since I moved here.  Both times it was less than an inch, and it melted in one hour.  Occasionally, a hurricane blows through, and where I live in central Texas, we only get the rain (and the aforementioned flooding).

I’m watching CNN.  Right now, they are covering the fact that crane broke on a skyscraper in Manhattan.  Ok, we get it, hurricane force winds will blow things over.  A reporter was in Battery Park.  Morons were jogging.  And to New Jersey.  People had their kids out on the boardwalk, waving to the camera, “hey, look at us!! we are stupid and have no regard for our life or the lives of our children!!”  The anchor just asked a reporter who is in the middle of an intersection in Atlantic City “is that water you are standing in salt water or fresh water?” Did he want him to taste it?  The news cracks me up.  The only good thing about this storm is that it is sparing me from election coverage 24/7.

I should switch it to Fox News.  I’m sure they’ve declared the apocalypse by now.  Or have found some way to blame it on Obama.

I hope all my friends and family in the path of the storm remain safe and damage is minimal.

From what I hear, the grocery stores were out of toilet paper, bread and milk last week 🙂


An unplanned trip down memory lane

I just got word tonight (via facebook, of course) that a friend of mine from high school passed away.  I haven’t actually shared spoken words with her since high school, or actually seen her since graduation, as she moved out of the area way before I did, but we caught up a few times via the internet.  She had chronic health problems since she was a child (juvenile diabetes) and was extremely brittle (that is a term that means uncontrolled with her blood sugars).  Even throughout high school she was in and out of the hospitals with blood sugar issues and complications.  I know in the past few years she had been found passed out in public and spent time in the ICU.  And I know as a nurse that diabetes, especially her type, is not kind to the body.  I’m not sure what happened this time, but I’m glad she is no longer suffering.

She used to pass out those glucose tabs (that they give to diabetics) out like candy during class.  She was the first diabetic I ever met, and through her I found out I wasn’t squeamish around needles (that helps when your future occupation requires poking people with needles).  I can still see her handwriting in my mind.  She had this really loopy handwriting,  mainly all curves.  She was smart as hell and wanted to be a biomedical engineer, but I’m guessing her health got in the way.  She went through a lot more in her life than just the diabetes, and I hope she has found peace.

She isn’t the first classmate of mine to pass away, but the first one whom I would actually go to the funeral, if I was living in pgh.  And the first that isn’t drug related or a suicide.  Or a shooting.  Or a drug related shooting.  Or an accidental drug related quasi suicide.  I graduated in 2000.

This makes me think about high school, as I’m sure everyone does from time to time.  Those four years for me, weren’t so great and lasted so long in my mind.  Now four years go by in a nanosecond.

Thanks to the wonder of the internet (and Mr. Zuckerberg) I am in nearly daily or at least weekly contact with a good portion of the majority of those that shared my high school.  I have found out that at least 2 boys silently pined away for me and found the courage to tell me 10+ years after the fact (I honestly thought one hated me because he actually used racial slurs to tease me.  Turns out he didn’t know it was a racial slur when he said it in the 6th grade).  And many people act like we were best friends in high school, even though, if this were 13 years ago, they wouldn’t even look at me let alone acknowledge my existence.

I dealt with a lot of negative attention in middle and high school due to my ethnicity and the lack of others like me in that area.  I would have people come up to me and ask me “well, what are you?” and I would reply “human, what are you?” And that continued into nursing school and into my career.  Grown adults would ask me if I was Hawaiian or Samoan, or biracial (technically, yes, but not what they were thinking).  They never thought to ask if I was Latina.

Maybe that’s why I haven’t been back in three years.  I did not make my 10 year reunion, no cash, and I’m not sure I wanted to go.  I would have seen the girl that passed away last night at the reunion.  Maybe I’ll feel better about it at the 20th.  I don’t think it is me not letting go of the past, its more about me not justifying the airfare to see people who treated me poorly.

Everyone gets made fun of as a kid.  Make fun of me because I said or did something embarassing in class.  Make fun of me because I’m a klutz.  Make fun of me because I’m a bookworm or because I can’t kick the kickball in gym class.  Don’t make fun of my ethnicity.  I can never, ever change it, its who I will always be, and it is something I will pass on to my children.

That’s a road down memory lane I was not planning on taking.  Cleansing breaths.

I hope one day I can think about that time in my life and not have painful memories.  Maybe one day.

I know my friend didn’t have such an easy time of it either.  Rest easy MB.

We Are Family

I didn’t always have it this good.

Both of my parents are highly educated nurses with over half a century of experience in the field between them.  They work in nursing education at the present moment.  You would expect empathy and understanding from parents that do it for a living, but growing up with nurses for parents usually yields the exact opposite.

As a child, unless I was turning blue or was bleeding profusely, it didn’t elicit any kind of alarm.  I had to have a fever greater than 101 or be projectile vomiting to stay home from school.  But on the other hand, I always had cool band-aids (they usually indulged me and used something from the hospital like butterfly sutures or tegaderm) and I practically grew up walking the halls at a major university medical center.  By the time I was a teenager, I had met extremely well known and well accomplished transplant surgeons, observed some procedures, visited research facilities, and knew I was destined to follow in my parent’s footsteps.

Back to my issues.  I have always had something medical going on with me.  I developed severe migraines at puberty (I think I had some as a child, I remember having really bad headaches).  I had a severe case of mono at 14.  And that is what seemed to me to kick off the immune issues.  While working in the ICU I contracted a hospital acquired infection.  I was so sick.  But it didn’t seem to faze my parents.  Not that they weren’t empathetic, its more like their attitude was nonchalant.

And then I was diagnosed with fibromyalgia while I was battling the infection.  I’m pretty sure my parents didn’t believe it was a real condition until recently.  I heard tirades about laziness, needing to “put my big girl panties on and deal with it”, “pulling [myself] up by the boot straps”.  I was so exhausted from the infection, my muscles ached, I was losing weight, my husband at the time was less than supportive. And my parents. who were nurses, thought I was faking.

I’m not sure if it is because there is literally no proof of illness, and the diagnosis is made by exclusion, but their attitude was less than comforting.

Fast forward to this illness.

I’m not sure if it is because it is something that is provable with pictures and blood results, but my parents are much more empathetic this time around.

Because I need to go to the eye doctor so much and require a driver, both of my parents (and my husband) have been to the doctor’s appointments with me.  They hear the prognosis, see the imaging and can ask their questions about my treatment.  I even make sure they come to the appointments that I could drive myself to, mainly so I don’t forget anything.

My parents call and check on me every day, they have been helpful financially and in caring for my daughter.  Occasionally I’ll hear a comment about “pushing through the fatigue/pain”.  They joke about my husband leaving me (which I hate).  But overall I feel like I have the support of my parents, which I feel I did not get during my first battle with severe illness.

I feel like I have the support of my aunts, uncles and cousins, which I most definitely did not have in pgh.  That is a story for another day.

And my husband.  We have some issues, but I let him read this blog yesterday, and he seems to understand more.  I write about this better than I can express it verbally.  He thanked me for letting him in to what it is like.

Unless someone goes through something like a chronic illness, in which they are experiencing symptoms every single day for a prolonged period of time, they honestly can’t understand it.  It is truly mindboggling.  The planning, the explaining, the fear (of the unexpected), the doctor’s appointments, the medications, and around and around it goes.

I am truly grateful to have the support and love of my family this time around.  It may have taken awhile, but I would rather have it now then not at all.