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.
Thanks.

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.

NEED HEALTH INSURANCE STAT

"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. "

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.  :)

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.

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,
Christina

How a Loquacious Lady turned into a Mute Maiden and Back Again

I set this blog up over a year ago with every intention of writing daily about the follies and foibles of my life and adventures.  I though it would be a snap since I am a very talkative and outgoing person.  Then, the oddest thing happened; I had not a clue what to write about.  Nothing came to mind, so I put this blog idea aside and waited for the appropriate time.

Then came Maranda and her Jolts & Jollies blog.  She was participating in Operation Layla (http://operationlayla.org/) which is a wonderful website designed to help a lovely lady named Layla with endometriosis afford the operation she needs.  Maranda posted on J&J about my struggles with Endometriosis (Endo) and polycystic ovarian disease (PCOS).  She made me remember a lot of important things about these diseases and what I've learned from suffering from them.

I read about Layla on operationlayla.org.  I told Maranda how touched I was (and am) that she posted about me in relationship to a cause about which I feel deeply.  I asked to be put in touch with Layla and Maranda set up an "introduction" via email!  Layla and I emailed each other and then I kind of dropped out.  It is a very raw subject and sometimes I cannot open that Pandora's box of pain.  But, today, I emailed Layla back and I realized that my journey with Endo, PCOS, infertility and chronic pain would be the focus of my blog.

I've met many women who suffer silently from these diseases.  Medicine knows little about the causes or cures; all they know is that Endo and PCOS are autoimmune diseases.  Yet, medical science can cure erectile dysfunction.  Now, that's a diatribe for another blog.

Back to the subject at hand.  What are these diseases, most people want to know.  Well, in two words, they suck.  Since they are diseases of the autoimmune system, inflammation is a serious cause of the pain.  These diseases cannot be caught but are inherited.  Some sisters, cousins, aunts, etc. may be effected while others in the family do not suffer.  I want to make these diseases ones that are as commonly talked about as breast cancer.  I want more research on these diseases.  Before you read further, take the time to educate yourself on these diseases. 

• Endo: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001913/
• PCOS: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001408/ 

This is my story:
It's been a difficult reproductive road.  I was diagnosed with Endometriosis when I was 24. It was painful, so painful. I was told there was a possibility I would have problems getting pregnant. The doctor told me to get pregnant asap! As if, at 24, I was remotely ready to have a child!

The pain of Endometriosis was excruciating. I tried hormone treatments: continuous birth control, 8 different kinds of birth control, medically induced menopause. All this, especially the menopause, made me a bear to be around. My hormones were crazy and I couldn't even stand myself. No matter what my doctors and I tried, the pain never left.

As for doctors, I fired 5. Mostly, they were not supportive. They blamed stress (i.e. hysterical female) and when nothing worked, they became frustrated with me! The only relief I had was when I had surgery to remove the endo lesions and the adhesions from the previous surgeries. It was a vicious cycle, but it would leave me pain free for a year and a half at the most. That was better than what I'd been going through. By the time I was 30, I'd had 6 surgeries.

The worst surgery was right before Christmas of my 27th year, 2002. I was having the worst pain of my life (as time progressed, my pain threshold would increase so that worse situations wouldn't hurt as much as this hurt.). I could not turn, walk or sit comfortably. This was and has been par for the course, but this time it was much, much worse. The pain made me vomit and feel freezing. I had been to the doctor and had an internal sonogram; they found a mass on my left ovary. They did not know if I had cancer and we made an appointment for Monday to start testing. That was a Thursday. By Friday, the pain reached maximum capacity, I was rushed to the ER. The doctors took me into emergency surgery. What they found was awful.

There was a 7 cm cyst going straight through my left ovary. Both ovaries were full of large cysts. (This should have been a clear diagnosis of PCOS, but no.) The cysts were removed; my left ovary was cut open, cyst removed and sewn back together like a baseball. I had lost 1/3 of my ovary. Additionally, there were terrible adhesions (tough scar tissue) and Endo lesions everywhere, even on my bowels. The cyst was a chocolate cyst, full of blood clots. If it burst, a clot could have gone into my lungs, caused and embolism and killed me. The removed the cyst, the endo lesions were lasered off and I was stitched up, the recipient of a 3 inch scar and two one inch scars on either sides from the tubes. This was surgery number 6.

My doctors were still useless.

I finally found a wonderful doctor whose wife suffered from endo, too. He diagnosed me, at the age of 31, with poly cystic ovarian syndrome. If my previous doctors had discovered the PCOS sooner, the following would not have happened.

I had another surgery to remove more cysts and endo. Number 7. And little relief from pain.

During this time I had begun a masters in secondary English education. It was a joy to go to school! I went doubled over in pain frequently, but I did not stop. When I had surgery 7, I was taking summer classes. I missed only 2 days of class and was mad at myself when I got a B in that class. As a friend pointed out, I got a B while recovering from surgery. I guess. I should have gotten an A.

But I digress. During grad school, I went to New York City to consult infertility specialists. I got devastating . I would never get pregnant. My eggs, because of the hormone imbalances of PCOS, do not mature into viable eggs. I was told that my PCOS was at Stage 4. To put that in perspective, if it was cancer, I'd be terminal. Stage 4 is the worst stage. There was only a 60% chance of conceiving without hormone treatments. I went back home in horror, anger and anguish. I wanted to be a mother intensely.

The pain continued. It woke me up in the night, made me sick. The cocktail of drugs I am that help ease the symptoms needed to be increased. It made me sicker. I lost 30 pounds in 2 months because I couldn't keep food down.

I was scheduled to have surgery # 8 in December 2009, during Christmas break. I was in my first year as a teacher and had gone to school everyday, pain or no pain. I went in for surgery with the agreement and understanding that if the right ovary (which was the source of constant pain) was not viable, it would be removed. I just wanted it gone but my doctor wanted to see if it could be saved.

It could not.

The right ovary was so full of cysts and heavy that it had twisted in on itself and was stuck to my pelvic floor with scar tissue (the infamous adhesions). It had to be removed or it would become necrotic, die and poison me to death.

I woke up one ovary short and feeling strange.

Over the recovery periods and for several months after, I felt like I was losing my mind. Mood swings were terrible; it was body getting used to one ovary producing estrogen and that ovary getting up to speed. It eventually evened out.

The loss of the ovary had a weird effect on me. It was necessary, I knew that and that was why I wanted it gone. But there was a hollow in my pelvis that could sense and feel. I began to feel like less of a woman while i adjusted. My anger at my situation grew steadily. How could this happen? Why? Why? Why? I cursed God and was an absolute bitch to be around. People would say condescending things such as the doctors don't know everything, you're worrying too much, and my favorite: are you sure you can't have kids? People can be callous and I wanted to punch them all when they said such things.

The PCOS and Endo was resounding repercussions throughout my life. I had lost a job due to how much sick time I took, my husband left me because he couldn't bear the thought of child not his own (there were also other reasons we divorced) and I lived in pain. But battling these diseases also gave me new perspective. If this is the plan, then maybe I am supposed to adopt. There are children who need a good and loving home and that I can provide. It's also made me more compassionate toward people who suffer. Oh and I don't hate God anymore, but that's another blog, perhaps. I still get angry and cry but I try to make lemonade out of this situation. Maybe I can help other suffers and help those who love us understand.

These diseases are autoimmune diseases. We who suffer may look healthy and act healthy most of the time. We may gain weight (PCOS makes our bodies think we're diabetic and hold onto every calorie. I gained a LOT of weight, it sucked, tried everything but WeightWatchers is the only thing that has helped me lose weight). The hormone fluctuations may bring on depression, anger, bipolar disorder, etc. They may cause our joints to swell and ache. We have to conserve our energy and get lots of rest. They affect every aspect of our lives. We may have to cancel dates or outings at the last minute due to pain and sickness. People may not understand and start to drift away. Then, we are alone, all alone to deal with these diseases. We find out who truly loves us because those are the people that stick around, no matter how miserable we feel. Those are the people that matter and are the gold in our lives.

Dealing with PCOS, endo and infertility is exhausting, challenging and depressing. But it makes me enjoy the good, healthy days all the more. Ironically, I feel blessed. I know who my friends are, realized with much greater understanding how wonderful and loving my family is and seen what I can endure with grace and humor.

I am happy to say I have only been in the ER for pain twice since my last surgery! But I do not have insurance; I'm an unemployed teacher. I am trying to navigate the world of government health care.

I hate insurance companies. It's easier to insure your car than yourself. I've been turned down because of my pre-existing conditions. Also, the rates these companies charge are criminal. They are bloodsucking leeches who thrive off pain and misery. They should be ashamed of themselves.

Ok let's end on a happy note! Today, I am in a relationship with a wonderful man who wants to adopt. I do not want to do fertility hormone treatments because my mother is a breast cancer survivor. I do not want to make my child a potentially motherless child.


As I said before, there is not enough known about these diseases.  For years, they were attributed to being "hysterical females," stress and anything else doctors who were out of their depth chose to blame our symptoms on.  Most times, it was blamed on us.

I believe that we suffers need to share our experiences and gain support from each other.  Just knowing that you're not alone means so much.  These diseases take away our quality of life, hopes of natural motherhood and sense of being female.  I want to create a community of wonderful women to support each other in our suffering.  Join me.

Any woman who suffers and those who love her are welcome to comment and be a part of my blogging journey!  I welcome you all!!

Thank you, Maranda and Layla, for giving me a purpose and a cause for my blog.

Love,
 Christina