MOVING!!

We officially moved out of my parent’s house this past weekend.  The real estate market here is insane, and it took about three months of looking to find a place that would accept us.

So now I’m in recovery mode.  Moving SUCKS with fibro.  I hate feeling useless, so I overexert myself in order to “help”.  I also made the mistake of missing a dose of Lyrica one night, so I was essentially out of it for most of Sunday.

What I did differently this time is take frequent breaks.  I also didn’t put any major stipulations on when I wanted things done.  Right now only the kitchen is completely unpacked.  I don’t mind living in boxes for the next week or so as long as I can function and I don’t hurt myself.

The stress of four adults, one kid, two dogs and one cat living in one house has now dissipated.  I am so much more relaxed and so is my husband and Sunshine.

I am forever grateful to my parents for letting us live with them during a very trying time.  It was difficult with so many strong personalities living under one roof.  But we survived.

Now to be unpacked by the end of the month.  Yep, that’s a good goal…

 

Advertisements

Making paper

It feels so good to get paid.

We are by no means out of our situation.  But seeing that check with my name on it with a decent amount attached to it is so fulfilling right now.  That entire check is going into savings.

Right now we are looking at the end of April for the move.  We want to be sure to have all of our bases covered.  I’m not even looking at places until we have a decent amount in savings to put down on a place.

The real estate market here in the Austin area is phenomenal.  Buy or rent, places are only on the market for less than a week before they are snatched up.  So I want to make sure I have all the little duckies in a row before I look and find something I like.  I don’t want to be disappointed.

Work isn’t horrific.  I’m tired.  I’m trying to rest.  But I’m so anxious that I’m offering to do ANYTHING to make myself valuable.  I’ve been on call this week, I’m doing call for a few weekends in April.  I’m volunteering to do marketing, chart review, clean the stock room, anything to get hours.

It just feels good to be productive again.  To contribute.  I have never been one to want to rely on someone else for my well being.  Ever.  One thing my parents (especially my mom) drilled into my head as a teenager was that I needed to get an education to get a good job so that I could support myself.  To never rely on someone else.  I never knew how much that advice would come in handy at the end of my first marriage.

So these past few years of relying on others have really torn me down emotionally.  For someone that makes a living…for someone who’s calling is taking care of others, being the one who needs to be taken care of is a real mindfuck.  It is guilttrippy.  I know those aren’t words but that is how I feel.

I like money…

Gainfully employed

I started back to work today.  A permanent job with permanent hours.  Its pretty much everything I was holding out for…hospice…part-time…flexible hours..in a territory close to my house.  I’m anticipating it going well.

The next week or so will be orientation.  I sat in front of a computer screen today and did policy and procedure modules. I’ll get more of that the rest of this week interspersed with meetings.  Next week I’ll be out in the field with one of my nurse friends that I used to work with at another hospice.  She put in a good word for me at this job.

I’m just anxious to be helping people again.  I know it is hard to explain to people who aren’t in this profession, but I miss it.  I miss the human interaction.  I miss listening to people, helping them solve problems, educating them.  I truly love being a nurse.

I didn’t sleep well last night, I’m chalking it up to nerves.  So some of the modules were somnolence inducing.  Tomorrow I get to meet more of the team.  I’m anxious to see how things work with this company.

I’ve mapped out the paydays and we are looking at moving mid-April.  It can’t come soon enough.

The pain has subsided with the rise in temperature.  Yesterday was BRUTAL.  Ice is not my friend.  I live here for a few reasons.  One of them being so I don’t have to deal with the total bullshit called winter.  This was my backyard yesterday morning:

grill

We used that grill a few days before…in 80 degree weather

 

I am soooooo looking forward to warm weather.  I don’t mind the heat.  I may occasionally complain when it gets into the triple digits, but I definitely prefer it to this crap.

SXSW starts this weekend.  I will be down there next Thursday night (my birthday) in hopes of feeling “cool” and “trendy”.  I didn’t get to go last year because of my health, so I’m looking forward to it.  I think its hilarious the things that I do now in my 30s that I didn’t get to do in my 20s.  Maybe its because my husband in my 30s is much more fun..

Very happy to be among the productive, contributing segment of society again.  Its hard to explain how this feels to someone who has never experienced it.  Even though I was (still am) sick, not being able to support myself, having to rely on others is a horrible feeling.  Although I have a wonderful husband who has never ever made me feel at fault or responsible for the situation we are in, it still sucks.  Seeing him work so hard at TWO jobs, one on night shift, just makes it worse.

So hopefully after a few weeks he can cut back, and we can get back on our feet and our situation can change.

Very optimistic right now.

 

 

 

 

 

 

 

 

My grrrrrr face

20140228_113003

Yes, this is my grr face.  Today is a BAD pain day.  In hindsight, I can see how this all transpired.  The “four seasons in one week” weather is contributing.  I have been running around trying to get a job, which I may have succeeded in doing.  I am emotionally spent.  I went on a date TWICE this week.  The second one probably did me in.

It was 34 degrees on the night of date number two.  And we went to an outdoor concert.  They have outdoor events nearly year round in Austin  because it rarely dips below freezing.  But we pick the one night in the past two weeks where it WAS near freezing to go to an outdoor show.  Figures.

Oh and we sat in metal chairs.  That did wonders for my fibro.

But we had fun.  We saw the Spazmatics at Cedar Street and they were fantastic.  Although I was born in the early 80s and wasn’t really old enough to get into the music scene, I knew all the songs and loved the energy.  Definitely what I needed.  A night of fun.  A true date night.  Absolutely loved it.

20140226_215644

So it is all catching up to me.  And since I’ve been rapidly titrating Topamax, I’m dizzy as well.  And I spent most of yesterday in the car running from my potential new employer to a drug screening, to the car dealership, to the store, to the mailbox place, to a friend’s house to scouts.  People who don’t experience what we experience don’t understand how awfully draining just driving can be.

This morning I woke up and literally couldn’t move.  My hips and low back were frozen.  Every time I tried to move, even a little, I gasped.  It was like my body was cut in half.  My husband, who just returned from his night shift, got Sunshine ready and off to school.

There are things that I HAVE to do today.  Like laundry.  I have no clue what Sunshine wore to school today.  If it matches, if it’s clean.  We are to that point in the laundry cycle where I MUST do laundry or we will be wearing bathing suits.  So that is adding to the misery.

My parent’s dogs are collaborating to make me insane by whining to go outside every two minutes.  They can’t coordinate their peeing/pooping/barking and the wind schedule.  So I’m getting up and down constantly.  Again, this is something that someone who doesn’t have these issues will never understand.  The whole act of hoisting my screaming body up from a seated or lying down position is extremely excruciating.  The same with getting back into said position.  So much so that I spent at least a half an hour pacing just to avoid the frequent up and down.

I can’t find my heating pad.  I can’t find my biofreeze.  I took an extra hot shower this morning…getting into the tub was fun.  I already took tramadol and I don’t want to take another because I do have to drive to pick up Sunshine this afternoon.  I have been stretching, but today, that is seeming to make it worse.  I have already warned my mother that I will need her assistance this afternoon.

And I’m not eating.  It is doing wonders for shedding of the steroid weight, but it might be contributing to this entire feeling like shit mess.  I think its the Topamax and the emotional upheaval.  I’ve been living on Fruity Pebbles and cottage cheese for the past few days.  And I pretty much have no desire to eat anything else.  Not even the Girl Scout cookies I have stashed away.

I keep telling myself that I can hold out another month or two.  The weather will improve.  Usually when it gets into March, we won’t see these roller coaster “four seasons in a week” periods.  I will hopefully get hired in the next week and can get back to work.  We can move out.  That will do wonders for my health.

As Sunshine grows, she is amazingly more supportive.  She hasn’t known anything else than a chronically ill mom.  She knows that I don’t prefer this.  She knows that when I feel well enough, we do the park, we do the mall, we play, we giggle, we have fun.  But on days like today, sometimes we just snuggle under the covers.  She gives me extra hugs.  She brings her stuffed animals to snuggle me as well.

I am eternally grateful to her Girl Scout troop.  Her leader and several of the moms know my issues.  They are great about helping out with transportation and play dates and getting her to and from events when I can’t.

So today sucks.  It will be 80 degrees tomorrow, so it will be better.  But then it is supposed to get cold and rainy again next week.  I honestly prefer the searing heat.  At least it is consistent.

Cows

I live in Texas.  Where the cows probably outnumber the people.  Which is staggering if you consider the booming population of cities such as Houston, Dallas, San Antonio and now Austin.

I live in Round Rock.  It is not in the sticks.  It is about 20 minutes north of Austin.  Population of 100,000 give or take the masses that move here everyday.  It is the headquarters of Dell.  The people that make the computers.  The growth here has been phenomenal.  Probably 15 years ago, the exact spot I’m currently sitting in was a ranch.  Which leads me to the point of this story.

For the past three weeks or so, there has been a group of rogue cows (longhorns, actually) who have been jumping the barbed wire fence across the street and roaming the neighborhood.

Now, I grew up in Pennsylvania.  Cows aren’t a novel idea.  But You had to drive 30 minutes outside a populated area to find one.

This area I live in is so populated that there is five elementary schools within a five mile radius.  All filled to capacity.

So this escaped longhorn thing really provided some entertainment.

Here are the pics:

This is the ringleader, Beau.  He is always forefront in any escape.

This is the ringleader, Beau. He is always forefront in any escape.

I guess the grass IS greener on the other side...

I guess the grass IS greener on the other side…

Sunshine and my Dad set up in the bed of his truck to watch the show

Sunshine and my Dad set up in the bed of his truck to watch the show

And here they come prancing down the street

And here they come prancing down the street

So this has been my distraction for the past couple of weeks.  Hope you enjoyed my cow tales…

 

 

 

Day 17

Where do you work?

Well, I’m currently looking for a job.  I had an interview today, but I’m not sure I’ll get it.

I am a nurse.  I have been a nurse for 10 years.  I have a wide variety of experience, from peds to ICU.

After my first brush with chronic illness in 2005, I was advised to stay the hell out of the hospital.  I contracted one of those lovely hospital associated infections and was sick for 9 months.  I have been told repeatedly that my immune system is not normal and I should minimize my exposure to horrific illness as much as possible.

So the hospital and hospital like care centers are out.  That is probably 80% of the field of nursing.

I have done “telephonic nursing”.  I absolutely loved it.  I was able to talk to people all over the country about being healthy, their chronic illnesses and medications.  It was very rewarding.  I left that job when I left my ex husband.  And it killed me to do so.

Since I’ve been here in Texas, I have done public health nursing, which I found boring, and then I went into hospice.

I love hospice care.  I can  handle it, which many nurses can’t.  After my years in the ICU, where I had to disconnect vents, see people perpetually kept in a state of limbo between life and death, providing a “good death” for my patients is key.  A “good death” is where the patient passes away at a location of their choosing, usually at home, and without pain or discomfort.  Patients get that with hospice.

Many times they are diagnosed with something like cancer or lung disease and they decide to forgo all treatment and focus on quality of life rather than quantity.  I have seen patients do some amazing things with the time they have left.  It is very rewarding, very spiritual, very emotional.

My problem with hospice right now is that I don’t think I’m well enough to carry a full caseload of 12-18 patients.  Each patient needs to be seen once a week at the minimum.  Sometimes more.  And the Austin area is pretty spread out.

When I got sick with the autoimmune disease, I was seeing 14 patients in a 50 mile radius.  I was doing 100+ miles per day on my car.  I was also working call on the weekend.  I see now that working so much probably triggered my disease.  So I’m trying to avoid that.

I’m looking for anything 16-20 hours per week that is office based, home based, in home health.  Currently my car is pitiful,  but hopefully we will be getting a new ride soon.

I am applying for telephonic nursing again, office jobs, hospice “as needed” nursing.  Hopefully I get something.

Anyone need a nurse?

 

Note to self: you are 31, not 21

The Los Lonely Boys perform at Austin Fanfest in Austin, Texas 11/15/13

The Los Lonely Boys perform at Austin Fanfest in Austin, Texas 11/15/13

 

Ugh.

I’m recovering.  Again.

I went out Friday night to celebrate my friend’s recent liberation from an oppressive, douchy, Kentuckian regime.  It is also race weekend in Austin.  Perfect time to meet people from all over the world.

And one of my favorite bands on the planet was playing a free show.

So I ventured out, in my cowboy boots, into downtown Austin.  The boots were a mistake.  I always say that, yet I always like wearing them.  Ugh.

The concert was amazing.  Music is a very potent part of my life, and the Los Lonely Boys (especially their debut album) have played a significant role.  I have seen them five or six times in concert, and I love it every time.

After the show, my friend and I hightailed it up to 6th street to party with the thousands of people in town for the race.  Apparently Austin has the only Formula 1 raceway in the United States, one of three in this hemisphere from what I understand, so race weekend is a big deal.

We met Brits, Aussies, Ruskies, Frenchies and Mexicans from Mexico.  Not to mention the domestic partiers who were just in town to party and had no clue it was race weekend (California and New York).

It was a blast.  I love talking to people from other parts of the world. I have no idea how many times I said “I would love to go there” about someone’s hometown.

I learned that French women aren’t all thin, Brits hate being called “Harry Potter”, and the Mexicans from Mexico are completely different from the “Texicans” here.

And we were treated to several different impression as to what they thought all Texans were like.  Think “yee haw” and guns.

I also learned that I shouldn’t do jagerbombs.

Or shots of tequila.

What is very interesting to me is that 10 years ago when I was supposed to be doing this stuff, I was under my own oppressive, abusive regime (but one from Fayettenam, Pennsylvania).  He was nearly a decade older and had already “been there, done that” so therefor I was not permitted.

It is wonderful to have the freedom, support, and love of my husband that I can go out with my friends, make some poor health decisions, and not be guilted into oblivion because of someone’s jealousy and insecurities.  My husband texted me “have fun honey, be safe”, whereas my recently liberated friend was STILL harassed via text by her ex.

And I reciprocate as well.  Everyone needs time out to relax and have fun.  And alcohol isn’t evil in a safe environment.

We were completely safe, took the train down and a cab home.  And due to the jagerbombs (Jagermeister and Red Bull) I twilight slept for maybe three hours.  Total.  My heart didn’t stop pounding until last night.

And I was unable to get my tattoo.  I was honestly concerned about the blood thinning properties with the alcohol.  So it has been rescheduled.  And I will definitely post pics of the artwork.

Lessons learned:  Red Bull is the devil.  Cowboy boots should not be worn down town.  Race week is fun and I have an amazing friend.  And I’m getting OLD!!

The Halloween hangover

Ugh.

I survived my Halloween “adult trick or treating” as Sunshine would call it.  I was out on Sixth street in Austin until about 2 am.  And I loved it.  

We haven’t been “out” like that since our wedding (June 2012).  So it was great to dress up and join the masses of crazy people in Austin.

I looked amazing.  I won’t post pics here, I know Sunshine’s sperm donor probably still reads this blog.

But I was decked out.

I just loved seeing everyone in their costumes, seeing people having fun.  Listening to music.  Quasi dancing with my husband.  

I was permitted to sleep until 11 today…thanks to my husband and the rest of the family understanding.  

This was a big deal to me.  I was able to go out for hours, in boots, have a few drinks and stay out late and I’m not dead today.  That’s progress.

No way on this earth I would have been able to do this a few months ago.  Let alone a year ago.

I guess one of the really shitty things about chronic illness is giving up things that were enjoyable.  Not that I was particularly athletic before the fibro, but I could shop, hang out with friends, etc without needing a nap an hour in.

I also know that I am getting older (and so is my husband).  We can’t hang with the 20 somethings anymore.  But just having the health to be able to try is wonderful.

So I’m just resting.  I’m just recovering.

This week it is now Sunshine’s turn…bring on the Trick or Treating!

Horrified…disgusted…grateful..

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 grandpa..is 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.

 

Pay the toll…you had fun…

Deep Eddy Pool in Austin, Texas

Deep Eddy Pool in Austin, Texas

I hate how both of these illnesses require payment when I do something other than sleep all day.

I am feeling pretty crappy today after actually getting out of the house and doing something other than going to a doctor’s appointment or to the grocery store.

I went with my family, my cousin, his girlfriend and their friends to a freshwater pool here in Texas.   I love going to these places around the city because they are so unique.

Deep Eddy pool used to be a swimming hole in the Colorado River.  After some storm damage, it was decided that they would make an actual pool.  They fill up the pool (in alternating sections) with fresh well water every other day.

The water is COLD!!  A bit warmer than Barton Springs (which is spring fed and always at 68 degrees, even in 100 degree weather).  But still freezing nonetheless.  Feels amazing on a day in the high 90s.

To get to the pool, there is a huge, steep set of concrete stairs.  That is probably what is contributing to my current situation.

And just being out in the sun and heat seems to sap my energy faster than anything.  We were there for a little over three hours.  And it was getting iffy for me as to whether or not I could make it up the stairs to head back to the car.

By the time I got home, I was feeling it.  I didn’t burn, thank you 70 SPF, but my back, legs and head were killing me.

And I had to do the methotrexate last night, because I’m volunteering for a little while at one of Sunshine’s school events tomorrow and I didn’t want to be a zombie.

So today sucked.  Horribly.  Sunshine woke up, true to her name, at 6 a.m.  I managed to get her to lay down with me while we listened to meditation music until 730.

I tried getting her fed and set up for the morning, but I was having difficulty walking and almost fell several times.  So my husband got up with her this morning and I went to bed.

But he had to go to work for a few hours around midday.  He came in and woke me up before he left.  I couldn’t give Sunshine the attention she wanted today, and she wanted to go to the pool again.  So my mom picked her up and took her to the pool in her neighborhood.

And I went back to bed.  Noticing a trend here?

I finally woke up at 530 pm to put dinner in the oven.  And I have been awake ever since.

My hockey team is on TV, they are in the Eastern Semifinals and I wanted to watch it on the big screen.  Or else I would be back in bed.

So as soon as this game is over, I am running a warm bath and then heading back to bed.

The pain hasn’t been managed too well with the tramodol today.  That is slightly scary for me.  I need to combine it with Tylenol more often to get the antiinflammatory benefits.  But with the elevated liver enzymes last month, I’m sparingly using all NSAIDS right now.  Not that I can take anything other than Tylenol anyway, thank you G.I. tract.

My hands and my left knee are throbbing, in addition to my left hip/lower back.  I’m not sure why I am having this pain, but I don’t like it.

I get blood drawn this week.  Hopefully the levels look better.  C-reactive protein was higher last month than the last test.

Positive thoughts?  I have been eating healthier.  We grow our own herbs, and with using oregano, basil and parsley I have been able to stop adding salt to my meat.  I really haven’t fried anything in over a week.  I’m eating more fruits and vegetables.  I made a huge pot of greens yesterday, but I’m a novice at the flavoring, so they were really, really bitter.  I was able to eat the carrots I put in the pot though.  Only slightly bitter.

It’s amazing that the human body craves what it needs.  For years I hated carrots, peppers, salads, etc.  My parents weren’t very forceful with the veggies when I was younger.  But I have noticed since I had the diagnosis of the autoimmune disease that my opposition to these foods is almost non-existent.

I have heard that your taste buds “mature” as you get older, but I think it is more of my body needing things and then craving that substance.  Interesting.

Cooking is what is keeping me feeling at least somewhat useful around here.  I have been making my husband wonderful dinners for the past few weeks.  I have been trying out new spices and cooking techniques.  Not bad for someone who was literally clueless at cooking a few years ago.

Can’t type much more, the fibro pain is also making itself known today as well.  Just lightly touching areas of my body is causing searing pain.  Example:  I went to scratch my arm a second ago.  I didn’t scratch hard, just enough to get rid of the itch.  The area where I scratched is now throbbing.  Fantastic.

I’m glad I got out yesterday.  Makes me feel like I am still a part of the human race.  I just hope next time the toll isn’t so high.