Friday, May 6, 2011

Life Gets Worse

I don't have a long blog.  I'm feeling very defeated and I need help.  I've had 1 good day in the last 2 weeks or more and yesterday was ok except I was nauseated all day.  Any walking I do makes me tired.  I'm still in pain and can't work.  I guess I'll have to look into disability. 
I'd be able to work once I have this surgery.  I'll be able to walk then!  Can't work if I can't walk and am in constant pain. 
I need help.  If I am able to raise funds for the surgery, I can get this done.  The average hysterectomy costs $16,500.  Of course, there is the cost of the hospital stay, doctor's fees, drugs, tests and follow-up care.  This can total $20,000 or more.  And then there's loss of work. 
Anyone know how to do a fundraiser?  I don't.  I am appealing to you all for any help I can get.

Tuesday, April 19, 2011

A Musing on Religion

I've been having discussions with various people lately about religion.  I've gone from being a practicing Roman Catholic to a Pagan to an almost Buddhist and back to Catholic.  Currently, I'm giving it a lot of thought and consideration about with which I actually vibe. 

It's difficult to break away from the religion of your youth, especially if you came from a family that practices that faith.  My extended family are not practicing Catholics, but my nuclear family practiced.  My father as well as my sister and her family got to church.  I went to a Catholic Mass on Ash Wednesday and once before.  The homily tore at my gut because it's not what I essentially believe.  For instance, although I have moral issues with abortion, I'm pro-choice because I have no right to tell anyone what to do with their body.  I would dropkick someone who tried that with me.  So, as a Catholic, I'm supposed to appose the health care bill because it is pro-choice, or I'm sinning.  We have to remember that all we are is dust, nothing more, and that we go back to dust.  That part made me question:  so, if I'm just dust, do I matter at all or am I just a fleeting mass of particles?  I grew up with the belief that we are all unique and special in God's eyes.  I still believe that so how can I embrace a religion that tells me otherwise? Or that puts women and homosexuals down and judges people left, right and center? Would Jesus be down with this kind of asshattery?  I think not.

One of the tenets of Catholicism  is the veneration of the saints.  I can honestly say I do sometimes pray to the Virgin Mary but I can count on two fingers how many times I've prayed the rosary.  I don't recall ever venerating a saint.  I believe that communion is a symbolic act and not transusbstantiation into the body and blood of Christ.  I think women should be clergy and celebacy should be a choice. So, taking all this into consideration, am I really a Catholic?

The parish I was raised in taught me all this and I embrace these beliefs wholeheartedly.  In visiting other churches, I have come to realize that I was raised in a parish that was Episcopalian beliefs masquerading as a Catholic parish.  Or so I think.  So, I guess when I come down to it, I'm at heart an Episcopalian.

But, I have a resistance to organized religion because of all the bloodshed and wars caused in religion's name.  Would Jesus be happy with THAT kind of asshattery?  Nope.  His message was 'love thy neighbor."  Where does it say slay the crap out of non-believers? 

So, I'm going to check out an Episcopalian church.  See what it's all about.  Religion is becoming more important to me as I deal with my health issues and seriously consider having the hysterectomy.  I have somewhat at peace with it, but I must find a reason why this is happening to me.  What good can I take from this that breaks my heart?  I, who want children so much, cannot have them.  I will be a wonderful mother.  Am I to adopt?  I feel that answer is yes but I want to know why I have the option of bearing my own children taken from me.  The thought of having no children ever is the depths of despair for me.  For me, taking solace in religion helps.  I'll see what the Episcopalians have to say.  I pretty much know that the Catholics would tell me if I had more faith, I wouldn't be so sad about my infertility.  They'd tell me to pray more for a miracle that I don't think will come.

Monday, April 11, 2011


"I went to the doctor today for my unending pain.  This post is not going to be eloquent and I'm tired and beat down.  This is the email I sent to Mike today detailing my visit.

First of all, it took forever to be seen.  I was done at 4:40; appt was at 1:45.  So, when I was seen, the doc agrees that a hysterectomy is likely my only option. However, SAC is not a surgical clinic so I'd have to go to Loma Linda (Hospital).  Since I have no health insurance, it would be hugely expensive.

Therefore, I am being referred to Arrowhead and will see if I get can qualify for the county health insurance.  It will take 2 weeks to get an appointment at Arrowhead. (note:  I am not pleased to go to Arrowhead.  Loma Linda Hospital is one of the premier teaching hospitals in the West.  Right up there with UCLA)

There is a pain clinic at UCLA that specializes in pelvic pain (endo and PCOS, as well) but that is out of my price range too.  Everything is out of my price range.

All this because I have no health insurance.  I do not feel confident about this at all.  I am extremely worried.  I am a prime example of how universal health care would benefit people.  I am very...I don't know, except I want to cry and give up.  This is so daunting to go through alone."

The pain is on day 13 with no end in sight.  My good humor is ebbing away.  I'm tired, in pain and depressed.  I bought chocolate to ease my depression and thank goodness for my family, Mike, friends and cats.  They keep my spirits up.  I don't have money to do this and I need it.  Like I said, "All this because I have no health insurance. "

Thursday, April 7, 2011

Thank You, Skype

I saw my general practitioner today and got a referral to the ob/gyn for Monday which is really fast at my clinic.  I'm in pretty bad shape.  I'll see the on/gyn on Monday and discuss my surgical options.  Super.

The doctor today put me on bed rest which is what I've been doing since I got back from the ER on Friday.  I'm very bored; there are only so many movies you can watch and books you can read.  (I read Persepolis in about 4 hours, total.  It would have been faster if I didn't stop to sleep!  It was really good!) Also, I'm pretty upset about this health issue which has been going on for 12 years.  Enough already!!!

I called Mike in Austria today (thank you, Skype) and we talked about my problems.  I feel broken and defective.  He is an amazing man, going through all this with me.  He loves me very much ( as I love him) and I am so lucky.  

It was so good to hear his voice.  I called the schlossel where he is staying and talked to the director.  I left the message "I saw the doctor today.  Please call me."  They relayed the message to him at the restaurant where he was having dinner.  He ran all the way to the schlossel as soon as he got the message.  Again, awesome guy.  (That's not to say he doesn't have his flaws, but real love is about loving people for their flaws as well as their strengths.) 

Mike is my rock and I miss him very much.  He makes me laugh in the ER by saying snarky comments about people and things.  When we're home and I'm like this, he makes me grilled cheese sandwiches his way which is delicious! (Loads of butter.) Grilled cheese is my "sickness comfort food."  He tucks me into bed when I sleep.  When I'm up, helps me to the couch where he has made up a bed for me so I can watch TV with him in comfort.  We watch movies, talk about silly things, like how much we love Danny Trejo then we'll go on a Danny Trejo movie kick.  Or we'll discuss why Nazis are the best movie bad guys because they are universally hated and then we'll watch all the Indiana Jones movies except for the 4th which is a horror show.  We go on movie theme kicks; for example, Rob Zombie movies, the Friday the 13th franchise, Indiana Jones movies, the Aliens trilogy, etc.  This happens when I'm sick or healthy; it's our thing. 

He also does silly things with our cats (a.k.a The Boos).  Boo (a.k.a Ivy) performs a little dance with help from Mike.  She lets him mess with her ears and make bunny ears, angry ears, etc.  He makes Bubba go crazy with the laser pointer.  I'm glad Mike loves cats as much as I.

Did I mention Mike can cook?  He is the Steak Master!  Give that man a steak and he'll concoct a delicious marinade and grill it to perfection (he's also the Grill Master).  He makes cookies and Puerto Rican food.  His Puerto Rican ribs are heaven.  He makes pancakes and bacon on Sunday mornings, sometimes.  And he makes a mean cup of joe, which is perfect since I'm a coffee addict.

I've never been this happy in a relationship so life rocks, in that respect.  Mike is my best friend (male, that is ;) ).  Our relationship is solid because we were friends for years before we became a couple.  I just wish I was healthier. 

The fact that he is not daunted by my medical problems is wonderful.  As Mike says, he is a man and only boys run.  I can't say enough good things about Mike.  In the style of teenagers everywhere, I <3 him.  :)

Wednesday, April 6, 2011

A Thank You

So, I never did end up posting again on Sunday.  The meds put me into such a dopey state that stringing words together seemed like a monumental task. 
I've been resting these last few days; whenever I try to walk it hurts so much it cripples me.  Resting like this has let me catch up on movies I've been meaning to watch.  Or re-watch as the case may be.  I've got a VCR (yes, yes I do) and we actually use it from time to time.  It's actually Mike's but whatever.
Anyhow, Mike set it up so that all we have to do is switch the red-yellow-white cables and voila!  Old school movie magic!
I set this up Friday night and rummaged through the tapes the three of us (Mike, me and Nikki, our roomie) have and decided on "Who Framed Roger Rabbit?" and "The Sting."  "Roger Rabbit" is one of my all-time favorites and it never disappoints.  It doesn't look dated and looks even better on pain killers.  It took me back to my teenage years; I remember I saw it with my sister.  That was a good day, we had so much fun.

Then, after the last credits rolled on "Roger Rabbit," I put in "The Sting."  The made it half way through that sucker and was thoroughly confused.  I decided to finish it when I'm not on industrial strength prescription drugs. 

Over the last few days, I've had the opportunity to think.  A lot.  I have to give much thanks to Jacci and Whitney who stayed by my side through the ER ordeal; to Nikki for bringing me my favorite burger and fries and to Jen and Matt for pizza and "Tangled."  I also have to thank my friends on Facebook (who are my friends in Real Life), for sending me love when I was sad and lonely today.  I give thanks to and for my family who have been with me on this road for the last 12 years.  I could not have made it this far without them by my side.

I have a lot to be thankful for and I'm truly blessed, despite my medical condition.  These are the people and blessings that get me through each day.  Thank you all and I love you.

But, then I started thinking of the flip side.  For all my optimism, I have a healthy dose of skepticism.  I wonder about those people who think autoimmune diseases are just an excuse for people to be lazy.  I think about the fact that not everyday is a bad day for me and just as soon as an flare up comes on, it can leave me in peace.  Or hang on for weeks. 

I have encountered a lot of disbelief when it comes to these diseases.  There are people who think it's bogus and all in my head, despite 12 years of medical records to prove otherwise.  I get sick of feeling that I must justify and defend my illness to people, especially those who know how the extent to which I suffer.  Honestly, it makes me furious.

But these are things that I can't dwell on or else it'll fester inside me and my skepticism will overtake my optimism.  If I allow these feelings of anger at some attitudes, then I become skeptical of motives of people who actually mean well.  I've encountered some people who want to help only to see if the illness is real and if I will "slip up" and act healthy.  I cannot stand this attitude.

Ok, enough venting.  Thinking about these idiots then takes me full circle back to the lovely, selfless people in my life who are there for me when I'm sick.  The purpose of this post is to let those people know how much I appreciate them and to say thank you for helping me.

Sunday, April 3, 2011

Dictionary of Terms

Lap means laporoscopy.  A minimally invasive surgery usually done through the navel.

A Brief Check-In

A few hours after I posted the first entry, I was gripped in so much pain I couldn't walk.  I was vomiting and had to call a friend to take me to the emergency room.  After 16 hours in the ER, this is what they had to tell me:  1.  I'm full of scar tissue 2. I have a cyst on my left ovary (the only one I have) and 3.  I need to consult a gyno surgeon.  The ER doc said he didn't think that was enough to cause my level of pain and I should get another lap to check for endometriomas.  I told him that the scar tissue was plenty to cause pain.  I do agree that I need another lap, though.  The way the doc found out about the scar tissue was through an iodine contrast CAT scan.  He performed a pelvic-seemed REALLY uncomfortable.  No ultrasound.  What?!  No ultrasound.  They kept blowing me off about it and I was in so much pain I was a poor advocate for myself.  Now, I have to figure out if I can get on Medi-Cal (the Cali equivalent to Medicare) as being disabled due to chronic pain.  I've been avoiding this step!  I will educate myself-perhaps I can be declared disabled due to the chronic pain and once I get the surgery, taken off disability.  I know I'll have to discuss the dreaded H word-hysterectomy.  I've got to go get some meds (yay!), so I'll post this evening in further detail.
Love to all,