Day 6

Something for your kids to know:

Hmm.  This one is a tough one.  I want to spare Sunshine some of the pain an agony I experienced in my teen years and into my late 20s.  I want her to know that a relationship with a man isn’t the “end all, be all”.  I want her to do things for herself, to get educated, to explore the world before she decides to get married.

I am also imposing a “do not get married until you are 25” rule.  Recent research has indicated that a person’s brain doesn’t fully develop until around age 25.  That people in their late teens and early 20s have difficulty with judgment calls.

I can definitely attest to the veracity of that statement.  I met my former husband when I was 19.  I got married at 22.  I know that I was too young.  I didn’t see the waving red flags in the relationship that indicated marriage to this man would not end well.  I just didn’t want to be alone.  I wanted security.  So I settled.

I want Sunshine to be her own person.  To develop who she is outside of a relationship.  That way she can decide if the person she is in a relationship with compliments or impedes who she is.  I want her to feel free to be herself in a marriage, if she even decides to get married.  I want her to know deep in her heart that the person she is with will always be her rock, her support, her friend, her confidant.  I’m not sure you can figure that out when your brain is still developing.

I am fortunate to find that person for me.  I want Sunshine to experience the joy, the fun, the complete contentedness that I experience with my husband.

One of my favorite wedding pictures.

One of my favorite wedding pictures.

Day 5

Share the best advice you’ve ever got:

In May of 2009, my life completely changed.  I found out some information that lead to the demise of my first marriage.  I had been planning on leaving for awhile, almost a year, but the whole “we have a daughter together” kept me in place.

One day I had enough.  My parents recently moved to Texas, and I called them asking if I could come for a visit.  No problem.

I originally planned to return to Pittsburgh.  I had a job, I had friends and I wanted to rekindle my relationship with a good friend who eventually became my husband.  He was living in the northeast at the time, and I thought that if I wanted to pursue anything more than a friendship, I would have to be nearby.

My mom was talking to my uncle on the phone while I was contemplating my future.  She was filling him in on what happened, and that I was debating on going back to Pittsburgh.

He had her put me on the phone.

He said “you have an chance here to start your life over.  Do not jeopardize that because you want to pursue another relationship.  If he wants to be with you, he will find a way to be with you”.

And he was 100% correct.  I decided to stay in Texas.  To start my life over.  My relationship with my friend grew and he moved to Texas early in 2010.  We married in 2012.  Both of us have amazing opportunities here that we wouldn’t have had living in the northeast.  A higher standard of living, better health, better mental health from the distance between ourselves and our exs.

So I credit my uncle with setting me straight.  Opening my eyes to the big picture.

I know for a fact that if I returned to Pittsburgh, it would have been awful.  Just dealing with my ex from 1500 miles away has been horrendous.

I am eternally grateful for his advice.

Alone

Sometimes I feel so alone.

In my illness, my life and my family.

I could be surrounded by people (like I am now) and still feel completely and utterly alone.

Yes, I have friends.  I have support of my husband.  But when my husband is mad about something that is out of my control at the moment (but essentially my doing) I feel like I’m an island in the middle of the south Pacific.  And with him working nights and sleeping most of my waking hours, it is like an acute pain.

I’m with Sunshine a lot.  I love being a mom, I love reading to her, doing things with her.  But she is six and doesn’t understand why Mommy is sad.  And I can’t (and probably never will) confide in her what goes on in my head.  No child should have to bear the burdens of their parents.  I know this well in my own relationship with my mother.

My friends.  Well, most of them are completely healthy.  They have no clue what it is like in my body.  Why I have to do the things that I do.  Why I can’t eat, drink or do certain things.  And they constantly try to fix everything.  I understand the gesture.  I do it myself often enough when friends confide in me.  But sometimes I know what I’m going to do, how I’m going to remedy something.  I just need to confide in someone.  To get these feelings out before they consume me.

My parents?  Forget about it.  I’m lazy.  I fuck up constantly.  I’m a disappointment.  I’m a failure as a mother.  They sometimes directly say this, but most of the time it is subtle actions and snide remarks.  Or my favorite, the silent treatment.

So right now I feel completely, utterly useless.  Alone.  And the emotional pain is too hard to bear sometimes.

I am seeing my therapist for the first time in over a year in the coming week.  I now have health insurance.

I know its depression.  But I’m trying to fight it.  To rise above it.  To go on and do things when I would much rather stay in bed all day and disappear into a book.

I’ll cry about it in the bathroom soon.  Then I’ll suck it up and go swimming with Sunshine.  I have a child to raise.

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!!

365 days

I started blogging a year ago today.

Wow.

Interesting year.

I’m thrilled that I have recovered to the point where I can work, even on a very part time basis.  I’m off of steroids, I’m driving.

But there is a price.  And that was my financial solvency.

We finished cleaning out our apartment yesterday.  I really liked living there.  Very bittersweet.

But, we have a room over our heads, food in our bellies.

My parents house is very quiet.  They live in the very back of an upscale housing development.  Its about a mile from any busy road.

With our apartment, it was right ON a very busy road.  So the quiet is a nice change.

My parents also have a house.  Much, much bigger than our apartment, even with 5 people, two dogs and one disgruntled cat under the roof.

And there is a backyard, and walking trails.  So in a sense it’s an upgrade, but with the trade off of living with the parents.

Healthwise, I am much better than a year ago.  My only major issue right now is pain and fatigue, mainly from fibro.

I’ve been overextending myself (again).  Yesterday after dropping off my husband at work, I came home and took a 1.5 mile walk before the sun came up.  That was really nice.  But I’m paying for it now.

My left shoulder has been KILLING me.  I woke up in the middle of the night on Thursday with searing pain stabbing into the top of my shoulder.  I broke down and took ibuprofen (which I really shouldn’t take) because I couldn’t find the Tylenol.  I iced it and had to resort to meditation to get me through it.  It was intense, probably an 8 or 9/10.  I couldn’t move my left arm.  But I finally got back to sleep, and when I woke up, it was gone.  I’m chalking it up to the mysteries of fibro.

Yesterday during my predawn walking fest, my left shin hurt on the front where the muscles attach, right below the patella and above my ankle.  I breathed through it, and was able to complete my walk.  But it was hurting so bad last night that I had to take tramadol.  Again, when I woke up, it was gone.

I tried to explain this to my husband.  He says that I will know when I go too far in my workouts because the pain of actual structural damage is pretty distinct.  But I disagree.  This mystery pain that comes and goes leads me to outright ignore it.

I generally have  a rule that if something hurts more than five days, it probably isn’t fibro.

Money wise, we are much better.  We actually went for dinner at a restaurant that doesn’t feature golden arches on Friday night with Sunshine.  She was so excited to go on a “date” with her parents.  We are contributing to the household finances, but we also get a chance to save a ton of money.

Relationship wise, it couldn’t be better.  My husband has lived up to his marriage vows and has stayed by my side through this entire ordeal.  He has stepped up and taken over the breadwinner role with working 2 jobs. I am amazed at his strength and devotion to making this work, because it isn’t easy.  It can never be easy when someone feels like hell 99% of the time.  Or when there is so much uncertainty in the future.  Or when the doctors really don’t know what to do.  He has always been my advocate, making sure I’m getting good care, making sure I’m taking care of myself, and I am eternally grateful.

Sunshine wise…she is doing fantastic, as always.  She loves her teacher, she was elected leader of her group in her classroom, she is growing a “grass head” for Girl Scouts.  Her tantrum issues have quieted down since the move, and I know she is feeling much better with the overall tension around her dissipating.  There aren’t as many younger kids around here as there were in the apartments, but the kids that are here are a much better influence on her.

Overall, I am in a much better place than one year ago.  I had just started methotrexate and was still on high dose steroids.  I didn’t know if or when my eyes would clear up.  I didn’t know if I would be able to return to work.

Now the future (the immediate future at least) is somewhat certain.  I’m going to complete this work assignment.  I’m going to see how my eyes are before I seek out more permanent employment.  I am seeing more floaters, but the doc said they might never go away.  So I’m determined to hold on until my next regularly schedule appointment at the end of October.

Nothing quite like a major health disaster to make you appreciate the little things.  I’m actually getting my hair cut this week.  That’s something I haven’t been able to afford since I turned 30 (in March of 2012).  I’m able to meet one my besties for lunch this week.  It isn’t at a steakhouse, but just seeing her..alone…without husband/kids/parents is great.

I’m glad to be in a better place.  Hopefully in another 365 days it will be even better.

 

The truth hurts..

So Sunshine’s absentee father found my blog.  And he is not at all happy with his portrayal.  

I would like to point out that the child has not had ANY communication with this man since July 21 of last year.  He also blew off a scheduled visitation with her two weeks later.

Imagine what it was like for me…just started on chemo…just came home from supporting my husband as he buried his mother…and having to try to come up with an explanation to my five year old as to why her Daddy didn’t show up to visit with her.  Fun times.

The last 15 months have been difficult.  If you are reading this blog, you already know that.  

Sunshine still occasionally asks about him and her stepsisters and half sister.  I have no answer for her.  All I say is “he is making different choices right now”.

I’m still not clear what prompted his sudden interest in our child.  I did briefly have a text conversation with him that basically solved nothing.  

No reason for the disappearing act.  No apology.

And no inquiries to Sunshine’s well being.  None.  Not a request for a picture (I did send one) no musings on how she is doing in school…no questions about her as a person and how she is growing up.

Apparently he has found God and is praying for me.  He informed me that God will deal with me.  Nice.

This little conversation completely reinforces my decision to leave.  

One day she will have more pointed questions.  And I will show her the reams of email messages, transcripts of text wars.  

I still have my wedding album from my first wedding, along with some of his old pictures.  I still want her to know where she came from.  He is half of her.  And she will be curious one day.

I am eternally grateful for my dad and my husband.  They both have amazing relationships with her.  She also had a great relationship with my grandfathers.  

Positive thinking:  I worked all this week.  I have new floaters in my eyes, but I don’t know if they are old floaters or new ones.  I’m trying to hold out until my appointment with the eye doc at the end of October.  

Things are going smoothly at la casa de mi familia.  No one is dead yet, the cops haven’t been called, and the cat and the dogs are getting along…but keeping their distance.

Sunshine loves her new school.  She seriously just asked me to make up more math problems for her to put in her homework journal.

Despite the circumstances, things are going pretty well.

 

Build-A-Bear and other devices of torture

Yesterday I went with Sunshine to her “Build-A-Bear” party for Girl Scouts.  I endured walking through the mall, going to Gattiland (its like Chuck E. Cheese without the annoying mouse) and attempting to socialize with the other moms.

I feel so out of place with this crowd.  Sunshine goes to Girl Scouts in the area where my parents live.  Its the same town, but my parent’s street has several million dollar homes on it (not theirs).  So the kids that are in Girl Scouts with Sunshine are wealthy.  And the moms rarely talk to me.

My mom is the one who usually does the Girl Scout stuff with Sunshine, but every once in awhile I have to take her to meetings or activities.

Most of these women have no clue what it is like to struggle.  The majority don’t work, they aren’t sick like me, their husbands make enough money so they don’t HAVE to work.  Must be nice.

But Sunshine had fun.  The party was funded with their cookie sales.  Sunshine sold over 100 boxes of cookies.

Sunshine made an all white kitty.  With pink high heels.  She named her “Sweet”.  Absolutely adorable.

I was horrified at the costs associated with making a teddy bear.  The girls earned enough that they could get a bear with one accessory or outfit.  But we had the option to buy more.  Which I couldn’t help with due to the whole “we might get evicted” thing.

There were girls that easily spent $100 dressing up their teddy bears.  I saw one “my little pony” stuffed animal that was decked out in rollerskates and a cape.  Seriously.

Although I feel bad that I can’t provide this for Sunshine, I’m glad that I am home with her everyday.  I couldn’t do that if I was working.

And she doesn’t notice the differences in finances.  She just knows that mommy is sick and because she is sick she can’t work and that when you work, you make money.

I hope when she grows up she remembers that you don’t have to have tons of money to be happy.  We do activities that are cheap or free.  We often take our own food because eating lunch or dinner out is very expensive.  We appreciate the times in which we are treated to activities we wouldn’t normally do or places we normally wouldn’t go because we know that without someone’s generosity (usually my mother’s) we probably wouldn’t be going anywhere.

Positive thinking:  Sunshine is learning that money isn’t the end all and be all.  She has a mom that is home with her instead of working her ass off trying to chase money.  She has a wonderful bonus daddy that is willing to put his dreams of becoming a nurse on hold so that he can get a full time job and take care of her mother.  She observes the way a healthy marriage operates every day of the week. I couldn’t buy this type of exposure for her.

Achoo!!

© Dinna79 | Dreamstime Stock Photos & Stock Free Images

© Dinna79 | Dreamstime Stock Photos & Stock Free Images

This really sucks. I still haven’t 100% recovered from the flu from hell, and now I have a cold that wants to live in my body forever.

Saturday morning when I had a sore throat I could feel it coming on.  But I still took Sunshine rock climbing (with her Girl Scout troop, I didn’t participate) and then went to a rally downtown that I was writing a story for.

Then I had dinner with my parents and their friends.  I came home that night feeling horrible but I had already taken my Leucovorin dosage and HAD to follow with the methotrexate later in the evening.

I haven’t been out of bed much since.  Yesterday I couldn’t even look at the computer.  Today I’m having limited success.

I still managed to finish my story and make dinner today, so the day isn’t a total loss.

Sunshine has been misbehaving lately, and her latest stunt earned her a weeks grounding to the house.  Having to explain to her time and time again that her behavior isn’t acceptable and her actions lead to consequences isn’t helping.

Any kind of viruses lately take a higher toll on my body.  They also last wretchedly longer than in the past.

A year ago I could take DayQuil and go about my day.  Now I have to stay in bed.  I know its the effects of the methotrexate.  But I don’t have to like it.

I have a wonderful husband, however.  He doesn’t hesitate to get me whatever I need to feel better.  I know how fortunate I am to have him.

I’m hoping for a run of more healthy days.  If I have a few in a row, I may venture back to yoga class…

Guilt

There are all kinds of guilt.  Catholic guilt, Jewish guilt, survivors guilt.  What about chronic illness guilt?

Today I am really feeling it.  My husband is taking steps to get a better job (full time, with benefits) so that we don’t end up moving in with my parents.

The thing is, he will also be working at his current job during training.  He will be doing training in the morning, and his current job in the evening.  That’s 12 hour days for him for the next month.

This past weekend was a whirlwind of activity.  Egg hunts, hockey games, the annual Easter get-together on my uncle’s ranch, which is an hour away.

I was exhausted way before Easter.  I spent most of the time yesterday just sitting on the couch at my uncles.  I really had a hard time even functioning yesterday.

So the exhaustion carried over to today.  I forgot to set my alarm, and Sunshine slept through hers, so she missed the bus.  That means my husband had to take her to school.  It was not a pretty morning in this household.

I feel like I could pass out now.  But there is laundry to do, a mountain of dishes, various bits of the Easter holiday spread throughout the house.  Candy here, an egg (plastic) there.  It looks like a Easter tornado hit this apartment.

Plan is for me to go back to sleep for an hour or two.  Then start trying to whip this place into shape.

The guilt.  I feel insanely guilty about being sick.  Down to the pit of my stomach, I feel awful.  The plan was that I would work full time so that my husband could go to nursing school.  I haven’t been able to return to work, so I lost my job in January.  Along with my  benefits.  I was pulling the benefits for everyone.  And I couldn’t get better in time to save my job.

His mother passed away a week before the end of the summer semester last year.  Even though he had a near 100% in the class, they would not allow him to do the final when he got back to Texas six weeks later.  So he now has to take this class over and THEN he can apply to nursing school.

I’m doing everything I can with regards to applying for assistance, attempting to generate some income.  Saving the little money we do have.

But the words of my ex-husband rings very loudly through my skull “I fell out of love with you when you got sick”.

I’m terrified that history will repeat itself.  I am overweight, I look like the marshmallow man from Ghost Busters.  I’m not just fat, I’m swollen.  My face is swollen, my feet, my fingers and my abdomen.  I now have really bad acne.  I hate the way I look.  Its to the point that I can’t look in the mirror anymore.

And I can’t get the house into a state that is acceptable to my husband right now.  He is a little OCD.  He has explained time and time again that the state of the house influences his anxiety.  If it is cluttered and out of order, he feels cluttered and out of order.

The problem is, I learned years ago with the fibro that it is virtually impossible for me to be on top of everything at all times.  It goes back to the gas tank theory.  I only have so much energy.  I would rather spend that energy on playing with my daughter or attempting to generate income.

Yes, the dishes need done (that is a priority) and food needs to be cooked.  But in terms of dusting, running the sweeper, laundry….I feel those things can wait.

So my husband will be a crazy ball of stress for the next month.  And I can’t keep up with the things that keep his anxiety at bay.

I feel such intense guilt.  Guilt that I can no longer produce, guilt that I can’t be the wife I would like to be.  Guilt that I look hideous.  Guilt that I am sucking up all of the money we do have to pay for meds and doctors.  Guilt that I can’t just push through it and do it all.  That I’m not strong enough to just overcome this illness.

I’m not terribly religious, but I’m starting to pray that I get through this.  That we get through this.  That things will be better in the coming weeks and months.

Positive thinking:  I got to see my family over the weekend.  I hadn’t seen most of them since Christmas.  It just feels good to belong.  To be around people I have a common bond with.  I rarely get out of the house these days, so it was nice to get out, get some fresh air and a tiny bit of sun.

What is in a name?

© Strelok | Dreamstime Stock Photos & Stock Free Images

© Strelok | Dreamstime Stock Photos & Stock Free Images

With my first marriage, at the naive age of 22, I quickly changed my name.  I had two reasons for doing so, 1) my maiden name was constantly butchered by the tongues of the northeast, not being used to seeing Hispanic last names 2) I guess I was still in the “rebellion from the parents” stage and wanted a new identity and 3) My former husband was very vocal about the change of my name in the event that we had kids.

When I got divorced at age 27, I couldn’t wait to change it back.  1) I hated the daily reminder of my failed marriage every time I signed my name on nursing notes and 2) no one in Texas knows how to pronounce a French sounding last name.

When my husband proposed to me in 2011, I was again faced with the name change dilemma.  What would I do after the wedding?

My husband is Italian.  Second generation Italian.  His entire name is extremely ethnic Italian, not just the last name.  So ethnic that he goes by a nickname in his day to day life.  I am sure that most of our friends do not know his “legal” name.

We have been married for 8 months and I still have not changed my name.

My second husband could care less that I share his last name.  It is just a non issue.  To him, it doesn’t reflect my commitment to him and our family.  If we ever have kids,which I hope we will, they will obviously have his last name.

Since I live in Texas now, there are several (hundred, thousand?) people with my last name, obviously most of my extended family.  I was amazed in the first few months after changing back to my maiden name that no one butchered it.  White, Asian, Hispanic, all colors of the rainbow seemed to understand the correct pronunciation.  It helps that there is a chain of eateries in the local area that is owned by a very distant cousin who shares my last name.

Again, for me, changing my last name means changing my nursing license.  Going to the Social Security office, going to DPS, going to the bank and making copious copies of the marriage license and SS card to prove the change to every other entity that is in my name.

At the pharmacy, they refuse to change my name back to my maiden name because I filled prescriptions there under the pre-divorce name.  So if I change my name AGAIN, I will now have a very long and multi-ethnic name attached to my medications.

Also, my husband’s ex wife, and mother of his child, still uses his last name.

That just feels icky to me.  There shouldn’t be two Mrs. _____ who care for my bonus child.  Confusing as hell.  And I wouldn’t put it past her to attempt to impersonate me to get information that she should not have access to.  Of note, my husband’s mother (also Mrs.____) passed away last summer.

But, the major problem with being married and retaining my maiden name is that people who are trying to be polite, call me “Mrs. insert maiden name here”.  That effectively makes me my mother and my grandmother.  Both wonderful women, but quite awkward to hear.

However, recent events regarding my daughter (who obviously has my ex-husband’s last name) might push me toward the name change.

Her sperm donor consented to termination of his parental rights toward her.  In order for that to occur, my husband needs to adopt her.  And we will presumably change HER last name.

I can either change my name with her, and all parties in this household will be under the same last name, including the cat, or she can just change it and I’ll be the odd (wo)man out.

Or I can hyphenate.  This is the most attractive to me.  I can hyphenate the maiden and married last names.  I would still use my maiden name for any writings I produce.

I want to do SOMETHING to signify the legal adoption and “official” sanction of my husband as my daughter’s father.  But am I ready to give up the last name I have used for 25 of my 30 years?  And fought so hard to get back?

I have time.  My goal is to have the adoption completed by the end of the year.  Maybe I’ll put it to a family vote.