Day 27

Something you miss

When she visited me in Texas, 2010

When she visited me in Texas, 2010

 

I miss my best friend.  I’ll call her Pooh.  We met in 1990 on a playground at the first day of my new school.  That was third grade.  We’ve been friends ever since.

We have been through some shit together.  We were both teased mercilessly in grade school.  I think that is what cemented our bond.  As we got older, we got in trouble together.  Summer of 1996.  That’s all I will say, and she will know EXACTLY what I mean.

My first wedding...to Sunshine's Dad, 2004

My first wedding…to Sunshine’s Dad, 2004

She was the maid of honor at my wedding to Sunshine’s dad.  She was there the day I gave birth to Sunshine.  She babysat exactly one time, and I’m pretty sure that Ms. Colic 2006 kept Pooh and her eventual husband kid free for a few years.

When I decided to leave in 2009, Pooh was in the middle of planning her wedding.  I was to be the matron of honor.  Instead of turning into bridezilla and having a fit that her matron of honor was moving 1500 miles away, she told me that I needed to do what was right for myself and my daughter.  She was also instrumental in helping me make the ultimate decision to leave and to remain in Texas.  She had some info about my ex that was proof of infidelity.  She didn’t tell me when she first found out about it because I had just had Sunshine and I was no shape emotionally or physically to deal with that kind of information.

I remember going over to her house, absolutely livid about what was going on in my life.  She calmly sat me down, explained what she knew, when she knew and told me that she would love me no matter where I was.  She probably saved my life.  If I would have gone home to my ex, confronted him about what I knew, I may not be here right now.

I returned to Pittsburgh for her wedding.  With the man that is now my husband.  And it was magical.

Her wedding, 2009

Her wedding, 2009

Since that time, she has had two babies.  I got married (again), and she made the trip down here to be at my wedding.  She was the only person from out of town to do so.  No one in my family (including my brother) or my husband’s family made it.  Her being there with me was so special.

We have remained close despite the fact that we live so far from each other.  We talk about once a month, but we text, FB, all of those things.  And every time we’re together its like nothing has ever changed.  She knows me so well, she knows my family, my husband.  Its the kind of friendship that she has no problem telling me when I’m wrong, when I need to chill out, when I need to look at things a different way.

With our baby girls, 2013

With our baby girls, 2013

When I was up in Pittsburgh this past summer, I got to see a lot of her, and meet her kids.  I swear, their cuteness rivals Sunshine’s.  We cried when we had to leave each other.

So I miss my Pooh.  I would love for her to move down here one day.  Or have the funds to visit more often.

We were supposed to take a cruise for the 20th anniversary of our friendship in 2010.  But she was preggers at the time.

So maybe it will be for our 25th.  Next year.  Wow.  I’m old.

Advertisements

Day 19

20 facts about yourself:

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

Here goes..

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Day 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.

Payday!!

Good Lord, it feels good to be productive again.

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

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

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

And finally, pay day.

First order of business?  Give my dad some money.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So today, things are good.

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.

<3 Valentine's Day

Valentine’s Day is more than just a holiday with overpriced flowers and candy (and stuffed animals)

http://www.stockfreeimages.com/

© Costa007 | Stock Free Images & Dreamstime Stock Photos

Fifty some odd years ago, my father decided to make his debut on this day. Twenty five years after that, my parents decided to get married. And this morning, my cousin’s wife delivered their baby girl.

So Valentine’s Day is serious business in my family.

In a way, its easier. I don’t have to remember two other dates on the calendar. My parents made that easy on us.

I gave up years ago trying to find the Hallmark card that says: Happy Valentine’s Anniversary and birthday Dad!

So I usually get a birthday card and an anniversary card. Along with a card for Sunshine and my husband. Good thing Hallmark had a special going today.

And this year I actually have heart wrapping paper. Courtesy of my neighbor. So my Dad gets his gifts in holiday appropriate paper this year, rather than the leftover Christmas paper he usually gets.

Most years I shop way ahead of time, but since I rarely go out of the house now, I resorted to shopping today.

I joined a long line of men who were all staring at the rows and rows of Valentine’s Day cards. Most of them were well picked over (the cards, not the men). I could practically see the gears moving in their heads (the men, not the cards).

I was unable to find the elusive, all encompassing birthday/anniversary/Valentine’s Day card. I couldn’t even find the correct envelopes. But the ones I found should suffice.

I don’t know why cards are so meaningful. For the price of a pretty Valentine’s Day card, I could buy a book for my Kindle. For the price of a dozen roses, I could buy a ton more books (maybe even some off the bestsellers list). So I’m not too big on the material good thing for gifts.

But my husband actually likes the romance and the cards and the gifts. So I appease him.

When I was first dating my husband, he was shocked that I didn’t “demand” flowers, candies and a gift for these types of holidays. He had never been with someone that just enjoys his company.

We aren’t doing anything major. He worked all day, I volunteered at Sunshine’s school. I am making him dinner, however. This isn’t new. But I am making one of his favorite things. Something that I don’t normally eat. So that should be special.

I still prefer a night in with him either watching movies or listening to music. Or just having a wonderful conversation with him. It doesn’t take much to make me happy.

Happy Valentine’s Day Y’all!!

Adventures in Parenting

My parents have recently pointed out the notion of karma. What goes around, comes around.

freeimage-1835755

© Isky | Stock Free Images & Dreamstime Stock Photos

Sunshine has been “grounded” for the past two days.

On Tuesday, Sunshine woke up complaining of a headache. No fever, no nausea or vomiting, but she was very vocal that her head hurt and she “didn’t feel well”. I get migraines, and I know they are genetic, so I gave her Tylenol. When deciding whether If I should send her to school, she said “Mommy, I think I need to stay home. My head hurts bad”. I told her if she stays home from school, she doesn’t get to play outside with her friends. My Mama law is: if you are too sick to be at school, you are too sick to play outside.

She stayed home. And wouldn’t you know it, when the school bus passed by with her friends on it, she magically recovered and threw a fit because I wouldn’t let her play outside. Her friends came over and were asking to play with her, I had her answer them and tell them what was going on.

Then yesterday she was grounded as well. Her kindergarten teacher uses a “smiley face” system to indicate behavior in the classroom. In her folder yesterday, there was a note with a “straight” face that informed me that Sunshine misbehaved in class, was throwing things at other classmates and was very rude when a classmate fell.

Mama’s law with behavior? If you can’t behave at school (or in public in general), you do not deserve to play outside or with friends.

After about a 30 minute tantrum, she calmed down. I’m fairly surprised at myself, the whining, the crying, the flailing didn’t faze me at all. I calmly repeated what happened, and why she was being grounded. I then discussed with her the things she can do to modify her behavior. I reiterated that she isn’t “bad” that she just had a rough day, and she will get a chance to change her behavior tomorrow.

At the end of the evening, when we had “Mama-Baby time” (it refers to the time we have when my husband is at work, we usually lay in my bed and watch movies before bed), I asked Sunshine what she has learned in the past few days. She said “I will never lie to Mama, and I will behave in school”.

Its hard to know what to do. As a mom, I love my baby so much and I want to make the bad feelings go away. But at the same time, I am responsible for raising a child. Along with my husband, we are responsible for molding her into a good member of society. We are responsible for teaching her right from wrong, and that her actions have consequences.

I also have the added issue with the possibility of Sunshine acting out due to her inner turmoil regarding her biological father. She has never had a “bad report” from school until right after he missed her birthday.

I am taking her to see someone next week. Like I discuss in Bio Dad, I am her mom, I have no experience with what she is going through.  Despite my nursing background, I am not versed in child psychology. My parents are still together, and so were my in-laws (until my mother in law passed right after our wedding). Together, we might not have the skills to understand what she has going on in her head. But I am willing to discuss the situation with a professional, and working with them and Sunshine to help her through this time.

And back to the karma: my parents recently toasted to karma at dinner last night. They are tickled to see me dealing with Sunshine’s issues (not the dad thing, but the temper tantrums). Like they told me when I was younger “I hope you have a kid that is just like you”. And it happened. She is me and my brother mixed into one. And my brother is a hell-raiser.

Sunshine is due home in three hours, we will see if she managed to behave today.

So far, so good..

A week into the new year and I’m doing ok.

Methotrexate hit much harder than usual this past weekend.  Much more nausea and the sensation that my limbs are full of lead.  Basically spent the weekend in bed, which is what usually happens.

Today I drank more water and actually took a 10 minute walk.  I sat outside for awhile and watched Sunshine play with her friends.  She is growing up so fast.  Halfway through kindergarten.

Migraines– I voluntarily stopped some of my meds due to cost.  One of them was to help with my migraines (topamax).  I have been on that medication and Lyrica since 2007.  About two weeks now without them and I think I need to go back on the topamax.  I have had a migraine 4 out of the last 7 days.  But when I refilled the prescription, I found out the hard way that it wasn’t on the list of “approved generics” at the local store.  So instead of paying $5, like I thought I would, it came out to $220.  And now I don’t have it.  I know not to even try Lyrica.  Last time I tried paying cash it was something like $8 per pill.

So I am now going to start looking at those pharmaceutical prescription help sites.  Its clear that I do have a need to be on some of these meds.

I am also getting help from a family friend to organize my medical records.  She is a legal nurse and has volunteered to help me with disability, finding free meds, etc.  It is pretty clear right now that I cannot return to my former employment.  I’m looking at other ways to make myself marketable, but one of the big issues with me is the fog that the meds cause.  And its unpredictable.  Nurses need to be on task, be able to make judgement calls.  And sometimes I can’t.  Sometimes I’m functioning just fine, but if I get to overwhelmed or too tired, I just can’t think.  Even looking at job descriptions the other day completely threw me through a loop.  I just couldn’t concentrate.

So getting help in this maze of health issues is so wonderful.  And even though I am a nurse and the product of two nurses, I still don’t know what I’m doing in terms of applying for benefits and presenting a medical case to the government.

I have also found a website that is completely dedicated to the actual problem I have.  I still don’t have a definitive diagnosis of sarcoid.  But at the last eye appointment, the doc mentioned the words “pars planitis” in addition to the usual terms of “uveitis”.  So I plugged them into the old search engine and I find a website specifically for pars planitis (www.parsplanitis.org).

Its rare.  I found it through the “rare diseases” database.  So rare the the group on Facebook for this condition only has 38 members.

Finding the website made me feel so much better.  I even wrote to the expert doc on the site and he wrote back.  Although the information wasn’t hopeful at all, it was a step in the right direction.  That doc says that I should do anything I can to get health insurance and that my case sounds very aggressive and that I am running the risk of permanent vision loss.  Fantastic.

But it did help to read the tons of information.  It helped to understand the condition better.  I have been addressing this in the wrong manner.  I have been looking for systemic reasons for why this is happening.  Per the info I have, it  can be idiopathic.  So I am switching my thinking around to focus on just my eyes.

It was also helpful to read that my docs aren’t completely off their rocker in prescribing treatment.  What I am doing is inline with what this website says is the proper treatment.  Again, as  nurse, I don’t 100% believe in everything the docs say.  Even with my eye doc, who is fantastic, I still have the tendency to be less trusting because of my 10 years of working with doctors.

So this year is going ok so far.  I still take it one day at a time, one night at a time.  That’s all I can do.

Euphoria

I don’t get to write many of these posts.

At this moment in time, I am pretty euphoric.

Had a fantastic day at the zoo with Sunshine, my husband and my mom.  It was a little chilly, but health wise I held up.  My plan of frequent breaks and rest stops seems to be working out.  Because of the weather, there was practically no one there.  I tend to get overwhelmed with crowds and lots of noise these days,  but we were able to stroll leisurely through the zoo with minimal difficulty.

On the way down (its about an hour and a half away), I did manage to give myself a migraine when I was trying to focus on the tiny screen of my camera to delete pictures to make room on my SD card.  But I took my medicine and the migraine (complete with nausea), subsided by the time we got there.  Score!

We had an early dinner that I actually had the appetite for (gotta love ihop) and on the way home all of the adults shared a “spirited political discussion” on the state of healthcare in America.  No one got upset, no one called names, voices weren’t raised.  Although I will continue to disagree with my mother’s position on access to healthcare, we were civil.

The main issue is that she feels the government has no business in healthcare.  I understand her point, but then consider my own situation:  I currently have no insurance, I have a chronic illness that could result in permanent blindness, and I have no access to a potential cure because I cannot afford it.  The medication I am currently taking to keep the inflammation in my eyes from progressing is not eliminating it completely.  It has been recommended for me to start on other medication to halt this disease, but I cannot afford it.  So I am running the risk of permanent eye damage because I cannot afford the optimal medication for my condition.  Because I can’t work to afford my health insurance.  I can’t work because of said health condition.  See the dilemma?

So we basically agree to disagree.

When I got home, my final Christmas gift was in my  mailbox.  The CD containing all of my professional wedding pictures from my wedding in June.

Just looking back on that day is enough to produce euphoria.  You can see the love we have for one another pouring off the screen.  I nearly cried.  We have been through so much in our young marriage, and just seeing that one perfect day (before I ballooned by 40lbs, thank you steroids) is such a strong reminder of our love and devotion.

Awesome day.  I shall savor it.

Goodbye 2012

I am very happy to see this year end.  

This year started on a very sad note, my grandfather passed away last December 28, and last year at this time we were in the middle of funeral arrangements.  I did the eulogy.

The remainder of winter/spring and early summer I worked my butt off to pay for our wedding.  I failed to notice how my health was being affected, and I just chocked it up to working more.

June 8, the eye balls started acting up and it hasn’t been the same since.

So at year’s end, I am 40lbs heavier, with poorer vision, increased pain, more fatigue and taking chemotherapy.  I am basically out of a job, out of insurance, and receiving assistance.

My mother in law passed away suddenly and my father in law attempted to follow her in quick succession.

No, I am not sad at all to put this year behind me.

I am again forcing myself to look at the positive:

I celebrated 15 years of friendship with the most amazing man by marrying him.  Our wedding was wonderful.  Everything I hoped and wanted it to be.  In the six trying, frustrating, emotional months since our nuptials, we have only gotten stronger each day.  He stands by me, he cares for me.  We have so much fun just being with each other.  I am truly blessed to have him in my life.

I gained a fantastic bonus son.  He looks just like his Daddy and he is is so polite, smart, and fun.  I truly enjoy having him around and wish he could spend more time with us.  He is wonderful to my daughter and I am so happy that he accepts me as a bonus mom.  I love the conversations I have with him and I love watching him grow into a young man.

Due in part to my illness and being home ALL THE TIME, I have a stronger bond with my daughter.  I am now a stay-at-home mom.  Towards the end of the summer, when my husband was sorting out the aftermath of his mother’s sudden passing up north, my daughter and I had six weeks of just us.  Mommy and baby time we call it.  Yes, we butt heads.  She is as strong-willed and dramatic as I was at that age.  But I’m not sure I would have gained this level of closeness with her if I continued to work at the pace I was working.  I get to put her on the bus every morning, I’m here when she gets back.  I get to help her with her school work, volunteer at her school (if I’m feeling up to it), and I get a front row seat to watching her grow.  For that I am eternally grateful.

Yes, this has been an extremely trying year.  Physically, mentally and emotionally.  But I can’t ignore the personal, interpersonal, emotional growth that has taken place.

So I am happy to see you go, 2012, but thanks for the memories 🙂