Monday, March 30, 2015

I just had a terrible dream, in it my father was alive, but only briefly and then I had to relive the pain of losing him all over again. And I'm not sure what's more heartbreaking, the dream or the brief few seconds where I woke up and thought "Oh thank God, it's just a dream!" And then realized while yes it was a terrible and heartbreaking dream, he was still dead and he's never going to come back. I cried so hard for so long, Scott held me, and in the end the tears dried up but the pain remains. In all my life it was one thing I never thought about, or even had nightmares about. I can remember dreams where I've woken up crying cause Scott had died, in one horrible tragic way or another, and those were few and far between, but never my parents. I just never faced their mortality, and now that my father is gone, and yes I'm aware it's been this way for two years now, I'm painfully aware of it now. And maybe I was deluding myself by ignoring it, and my father's failing health, but I tell you, I was not ready to lose that man, and I don't think I'll ever be.

Sunday, March 29, 2015

I can't believe I haven't written one single word since November! NOVEMBER!!!! That's an incredibly long time for me to go without writing.  I love to write, I enjoy it and it relaxes me, plus it helps me get out all those pesky feelings that become too much to carry alone.  So this post may be long, as I'm going to try to explain everything going on in my life.


It started with a case of unexplained pericarditis. I had it, no doubt, but no one knew where it came from. Then a week later my face bloomed with a beautiful rash, a text book lupus butterfly rash. Only I didn't know what it was at the time, so I thought nothing of it, to be honest, I thought it was a terrible case of acne at first and I was so embarrassed!! I couldn't figure out why I would have acne, when I washed my face twice a day every day, and I washed my hair daily and I took care of my skin! But then the palms of my hands and bottom of my feet starting looking blotchy.  Well, when I had my follow up with my doctor for the pericarditis, she said she thought I had lupus looking at the rash. Okay, so now a new specialist. So we go off to the rhuematologist, and she starts with different medicines and the rash clears up, but the chest pain never left, and now my lower back hurt too. I couldn't take deep breaths, sneeze, cough, talk for long periods of time, burp, hiccup, sing, or even stretch without pain stabbing my chest and stretching out over my lower back. Almost a year later, and they still can't figure out how to stop the pain.

I had my FIVE YEAR SCANS in March, but I didn't get an all clear.  Scans showed fluid around my lungs, and a couple enlarged lymph nodes.  She thinks it's just the lupus, but she asked me to come back in six months to follow up on it. So I can't celebrate yet, but I'm hopeful I will get to soon.

My eye doctor has tried everything in the world to take care of my right eye. But nothing worked. It just continued to get worse. The foreign body syndrome (constantly feeling like something was in my eye), the dryness, and the blurred vision just would not get better. So he suggested I get evaluated for the PROSE Lens.  Its a prosthetic lens that looks a bit like a contact lens, that has to be filled with a special liquid and then placed on the eye.  There's a lot to it, and it's very involved, but I was evaluated and found to be a good candidate for it, so they started the insurance approval stuff. The lens is $5,000, FIVE THOUSAND DOLLARS!! But luckily insurance would cover 90%, so I just had to come up with $500. Not to bad, but very daunting indeed.  So we started a gofundme, as suggested by my Aunt Susan, and within 24 hours my friends and family (and a couple strangers) helped me reach my goal! So now I had the money, so I called to schedule the first of many appointments! I have to have it fitted to my eye, so its taking awhile, but I have my lens, it helps me see, and once it's fully adjusted for my eye I'll be able to wear it all day without a problem.  Right now it gets too tight on my eye, and I have to take it off and let my eye relax, I have no feeling on that eye so the only way I know its tight, is I start to feel bothered by it.

Grace started kindergarten in the fall and is doing great! The teachers love her, the other kids like her, and the teachers always tell us how great she's doing. She's reading, writing and even doing some basic math (addition), I can't believe how awesome she's doing.

Scott is still at Microsoft, and actually just had an interview to move up in the company a bit. I wish I could tell you what the position is, but my mind has completely blanked on it suddenly. But it would mean a more steady schedule and hopefully a pay raise. So fingers crossed for that.

I'm a softy, and I've always cried at the drop of a hat, but lately I haven't been. Normally I'd tear up during sad parts in movies or books. Sappy parts, sad parts, everything made me tear up.  Scott used to tease me about it.  But lately, I've been telling him I'm broken, because nothing makes me tear up.  Well I found out today, I'm not broken. I was listening to music and the song "Dance with my Father" came on (you know that Luther Vandross one) and cue the waterworks! Oh boy! I wasn't a great big soggy mess, but I had the tears coming down while I sang along.  And the one line that REALLY did me in? "Never dreamed that he, would be gone from me".  Yeah I miss my dad, still, like it was yesterday. So back to my ban on songs father related, lol.

Well I guess that's it.  I don't have much else going on right now, life is pretty good right now. So I guess I'll leave it at this point.

Be well everyone