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.


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.