One of the Most Defining Moments of My Life

I used to have two older brothers that I loved equally and immensely (I remember as a little girl, trying to pick a favorite, but I just couldn’t decide).  However, one day when I was twelve, I lost one.  He didn’t die, he left the family.  He no longer speaks to me or my parents.  I loved this man and he had been loving towards me.  I thought that he meant it.

So, the story starts with my father marrying his first wife and adopting her young son (B) whose father had died when he was only 6 months old. My dad raised B and my other brother (J).

Unfortunately, my dad’s ex wife divorced him after almost 10 years together. My father ended up with seeing the boys on Wednesday nights and every other weekend. When he met my mother, he also took a job offer in a bordering state. Custody changed to a few weeks in the summer and Christmases. Those were the times I bonded with them.

Once they were all grown up, I only saw them once or twice a year. I can still remember the day we went to surprise B at his work that we had come to town. He saw me, opened up his arms real wide and I ran straight into them. Despite my current feelings, that’s a good memory that I can carry with me.

J got married first when I was nine. I met B’s girlfriend a while later and then finally they were having a wedding. We all drove down for it, being very excited. That’s when we found out his true feelings for us. J told us B was losing my father’s last name for his new step father’s last name. We were all shocked. Why would he do this, especially to my dad?! My father had raised him as his own.

We ended up not going to the wedding, including J. I think we were all very hurt. This is also when communication was lost between my father and me. I felt so abandoned. And betrayed.

When I was about 23 or so, I found B on Facebook and was so enraged that I sent him a message wanting to know why. He simply replied that my dad had “abandoned” him for his “new” family. I guess he forgot our bonding time and the fact that his mother divorced our father.

I replied back, asking why me? What did I do? No reply. Communication lost again.

So now I tell people I only have one brother and that’s just how it feels, except for the void in my heart where I used to have two.

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When Scleroderma Becomes Mixed Connective Tissue Disease

In following my post about my change in diagnosis,I must explain a few things.  When I was first diagnosed with Scleroderma, they also diagnosed me with Juvenile Rheumatoid Arthritis (JRA) and Sjogren’s Syndrome, two other autoimmune diseases.  Have a significant amount of multiple autoimmune diseases is called Mixed Connective Tissue Disease (MCTD).  The JRA and Sjogren’s became fairly irrelevant to my health by the time I had completed 10 years of treatment.  The Scleroderma has stuck with me.

Now, I apparently have MCTD again as my immune system is attacking my liver.  Unfortunately, this can spread to my heart and lungs if left untreated which can be fatal.  So now we’re back to heavy duty treatment and constant monitoring.  This is what I DIDN’T want to happen.  I didn’t want to go through another process of treatment that could take years.  I don’t know if I’m ready for this, but I have to be.  I’m trying to take it one day at a time.

Secondly, this morning, I found out that my perforation from my septoplasty is not healing and I will need more surgery to close the hole.  It seems more invasive because this time they have to make an incision on the front of my septum and one on the side of my skull.  They are going to be using jaw muscle (from my head) to help stabilize and fill the hole.  S-C-A-R-Y!

I will have staples, stitches, and splints.  Can’t wait.  : (

“We Have a Different Diagnosis for You”

I’m 29 as I write this and I’ve had Scleroderma, an autoimmune disorder that includes hardening of the skin, since I was about 12 although not diagnosed until 13.  I recently had my usual check-up at my rheumatologist’s office where they did some blood work and found that my liver enzymes were significantly elevated.  They sent me for more specific blood work and even had to send one test to the Rheumatology Diagnostics Lab in California.

I just got a phone call this morning telling me they have a different diagnosis for me and I need new medications. They want me to get in within a week because the medication takes 12-15 weeks to start being effective.  I don’t know what to think.  Was I misdiagnosed for 16 years?  Or maybe this is in addition to the Scleroderma?  And what in the hell do I have now?

Admittedly, I haven’t been able to catch a break from pain (I’ve been trying to work out more).  First it was three flares ups of the Scleroderma, that’s supposed to be in remission, and then it was Bursitis in my shoulder.  Then I broke my leg tripping over a suitcase in the dark.  Then I had some extreme leg pain shoot from my hip and now my foot feels like I tore a muscle near my ankle.  I’m hoping this “new diagnosis” can explain all of this.  That’s the only good I see coming from my upcoming visit.

I’m really not up for starting the process of treatment again.  It took ten years to get my Scleroderma under control.  Just thinking about it is exhausting.  Will I be on these new medications for a long time, or maybe for the rest of my life?  Is my life even going to last much longer?  Is there a possibility of remission with this one?

I want answers and I want them now, but apparently, “it’s too complicated to discuss over the phone.”  Bullshit.  Just give me the name of something so I can be prepared now instead of worrying for a week.  I’m fucking scared.

Day 13/30: Bullet My Whole Day

I think it’s safe to say I failed the 30 day challenge…life happened.  But I will finish it.  Here’s the one for yesterday.

  • 0:00 – go to bed
  • 2:00 – wake up, can’t sleep, watch some TV, cross stitch
  • 3:30 – back to bed
  • 5:00- up again, TV, play on computer, cross stitch
  • 7:30 – get the baby up and change his diaper
  • 7:45 – feed the baby his breakfast
  • 8:15 – eat my breakfast, get dressed, etc.
  • 8:45 – play with the baby/watch TV/cross stitch
  • 10:00 – go to Walgreens for some pictures
  • 10:15 – return home, eat a yogurt
  • 10:30 – more time with baby, cross stitching
  • 12:00 – back to Walgreens to pick up pictures
  • 12:15 – return home, watch the baby and read
  • 13:30 – get ready to leave
  • 14:00 – leave for lunch with a friend
  • 14:30 – sushi lunch with a good friend
  • 16:30 – return home
  • 16:45 – get ready to leave
  • 17:15 – leave for prison
  • 18:00 – visit husband at prison
  • 20:30 – say goodbye to hubby
  • 21:00 – arrive back home, play some WoW
  • 23:00 – head to bed

Day 10/30: iPod Shuffle – Name the First Ten Songs

First I must say that I’m disappointed that Dashboard Confessional and Lifehouse did not come up…

  1. Michael Buble – “The Way You Look Tonight”  Not my favorite Michael Buble song, but I do love his voice.  I’d recommend “Haven’t Met You Yet,” “Fever,” and “Home” for starters.
  2. Paramore – “Misery Business (Acoustic Version)”  I love this song (both versions) and my two other favorites by Paramore are “The Only Exception” and “That’s What You Get.”
  3. Dr. Dre – “Guilty Conscience”  LOVE me some Dr. Dre and that about covers rap for me.  I will dabble a little with 2Pac, Busta Rhymes and Snoop.
  4. Less Than Jake – “Danny Says”  Less Than Jake is a pretty good ska band, but I do like Mad Caddies, Catch-22, and Reel Big Fish better.
  5. Mandy Moore – “For Always”  Yes, I like pop songs too.  I personally think Mandy Moore has a sweet, innocent voice and I do like it a lot.  Not quite love, but like a lot.
  6. theStart – “A Thousand Years”  Awesome punk band with a female vocalist.
  7. Miles Davis – “‘Round Midnight”  Not my favorite Miles Davis, but his Bitches Brew album is amazing.
  8. The Bouncing Souls – “Gone”  Another good punk band, but my favorite is The Lawrence Arms.  Other amazing punk bands are AFI, Rancid, Alkaline Trio and Social Distortion.
  9. 30 Seconds to Mars – “Vox Populi”  I LOVE 30 Seconds to Mars and I’d recommend “From Yesterday,” “The Kill,” and “Attack” for beginner listeners.
  10. The Wreckers – “Leave the Pieces”  I’m a sucker for a good, broken-hearted country song.  I like Brad Paisley, Keith Urban, Martina McBride and Miranda Lambert a lot.

Day 9/30: My First Love

I guess you could say my first love started in high school.  He was one of my best friends and I had a little crush on him, but I didn’t think much more of it.  He dated other girls and I didn’t mind.  I dated other guys.  As we kept in touch over the years, our relationship changed.  We were 21 now, and a movie hang out turned into a date with hand holding and a kiss good night.

I was excited, blinded, and maybe even happy for a couple years. I thought he was everything I wanted/needed.   He eventually moved away and we tried a long distance relationship.  I had a blast visiting him.  But eventually things died down and I never heard from him again.

For me, being 21 and 22, was almost the same as still being a teenager.  I really thought it was going to work out.  I really thought I wanted to marry him, but I’m so glad I didn’t.  I wouldn’t have been happy and I wouldn’t have my wonderful husband that I have now.

Day 8/30: The Moment I Felt Most Satisfied with My Life

I have to say the moment my son was born and I heard his first cry was the most satisfying moment in my life.  All the work I had done in the past nine months had paid off.  All of the pain, all of the throwing up, fatigue, heartburn and trying to stay healthy was for that moment.  And here was this beautiful human being that completely needed me.

Being bipolar and having an unexpected pregnancy, I quit all my medications cold turkey, hoping for the best.  I had my husband’s support which helped immensely.  From week six to week fourteen, I threw up everyday from morning sickness.  At week 28, I endured terrible kidney pain from a kidney stone until after my son was born.  (Let me say that kidney pain + contractions REALLY hurts!)  I was in labor for over 12 hours before the doctor decided he just couldn’t come out naturally and I had to have a C-section.  Even though I got an epidural, the pressure of a baby trying to come out a mostly CLOSED hole (4 cm dilated) really hurts too.

Two nights before my C-section, I’d had a gruesome dream about having a C-section and it was the VERY last thing I wanted to do.  So enduring the fear of the operation was completely satisfying in itself.  But the moment I heard that first cry, tears immediately streamed down my face.  I didn’t even have time to get choked up, I just cried.  I knew that I was crying from relief and pure joy.  Everything that had led up to this point washed away and all I could think about was my beautiful, HEALTHY, baby boy.

holding baby boy2