Stepping up the game..

Ok body…here comes more of the big guns.  Friday is medication night.  In the last exhausting rounds of medical appointments and tests, it has been determined that my eyes are better, I have minimal inflammation and no bleeding, but I still feel like crap and my other symptoms of sarcoidosis are worse.  And that I am having bad side effects from the oral form of the latest treatment, methotrexate.

I actually had to skip my last weeks dose of methotrexate because my immune system was so low, I developed an infection in my mouth and throat, thrush.  I still have a little bit of it, but its important that I get the dose of methotrexate in my system today as the symptoms of the sarcoidosis are severely limiting my quality of life.

The past week hasn’t been much fun.  I’ve just felt overwhelming fatigue.  Like all the energy has been sucked out of my body.  Fibro fatigue is different from sarcoid fatigue.  With fibromyalgia, it feels like walking through jello, like you are constantly swimming against a current.  With sarcoid, it feels like your limbs are made of concrete.  Like every movement is taking every bit of energy.  Every large movement at least.  Typing isn’t so hard, but I can only do it for a short period of time before I have to stop.

With fibro, I don’t think I have ever gone “lights out”.  What I mean is that I’ve never had the sensation that I am falling asleep and there is nothing I can do about it.  But that is exactly what has been happening with me in the past month.  It first happened the second week of August.  I was fortunate to have hired a babysitter to watch my daughter while I slept. And it happened again today.  I fell asleep right at this computer, and woke up two hours later.

So tonight, after I make an amazing dinner with my husband, that I hope to keep down, I will switch to the injection form of methotrexate.  Yes, I’m nervous.  I’ve given myself migraine shots before, but the bottle has “cytotoxin” written all over it.  Yes, I’m a nurse.  I used to give shots all the time.  But there is something about giving yourself a shot of chemotherapy, albeit a baby dose, that is a little unsettling.

And whatever side effects I experience, well, my husband is here.  I hope that it is minimal as compared to the oral dosage.

Oh, and I’m still on the dreaded steroids.  I hate that shit.  With a passion.

So my goal for the weekend:  get my treatment without major issues.

Oh!! The insanity!!

Hi!  I’m M.  I turned 30 this year.  I can’t believe it.  I have no idea how I got here.  Where did my 20s go??  Who is this little girl and why is she calling me Mommy??  This year has been a whirlwind.  When I was 12 or 13 I would look in the mirror and try to imagine what I would look like at 18.  At 18 I would do the same at 21.  I never pictured 30.  Ever.

So yesterday was my half birthday.  Meaning halfway to my next birthday.  Almost 31.  Its still not sinking in.  I guess that’s why I’m blogging.  There are so many themes to my life, so many issues I want to just get out of my system.

I’m currently unable to work.  I’ve had this undercurrent of illness to my life, since I was a teenager, and again it has flared up.  Right now my life is uncertain due to my health condition and I have plenty of time to sit here and think…think…think.  Can you tell I’m a mom?  That was from “Blue’s Clues”.

Despite what is going on, I am very happy with my family, my husband, my daughter, where I live.  I was born in Austin and raised in Pittsburgh.  I left a bad marriage three years ago and moved back to Texas.  I married a longtime friend in June.  Our love story is worth it’s own post at a later date and time.  I have not been back to Pittsburgh in three years.  I have my own reasons and I’ll probably blog about that too.  I am just so amazed how different our country is from region to region.

I am a nurse.  Nine years now.  Most recently in hospice.  That plays into my spiritual beliefs.  I don’t go to church, I was raised Catholic and I  no longer believe in that doctrine.  I’ve tried different churches when I moved here.  No dice.  I can’t go to churches that openly condemn other people just because they are different.  So the search continues.

Since I’ve been more ill than usual I have been reading constantly.  I fear for the life of my Kindle, because it is getting obese and being forced to work late nights and long hours.  I am always interested in a good story.  So I will blog about my favorite books, what I’m currently reading, etc.

And finally, I can’t ignore what I was trying to ignore.  I was trying SO HARD to ignore this years presidential election.  Really I was.  My parents are extremely RED.  I mean, my mother listens to Rush.  I used to drink the kool aid too.  I have yet to register to vote in Texas, but I plan to soon, and I will register as an independent.  I don’t particularly like either candidate, and at this point in time, I’m considering writing in my cat, Punkin, for President and my daughter’s stuffed cat Minnie, for veep.  I do have very strong feelings regarding women’s rights, sexual assault, immigration, healthcare, foreign policy.  I know my history.  I know the constitution.  Sometimes I would like to keep my head buried in the sand, but it took that idiot Akin in Missouri to get me really pissed, as a nurse and a woman, and realize that we are letting men and politicians have a say about a body part that they do not possess.  INSANITY!!!