so...now what?!

This past week has been quite a tumultuous one...and an emotional one at that.

It has taken me several days to get my emotions under control enough that writing a post was even physiologically possible.

So, let's start at the beginning:

Last Saturday, a week from tomorrow, I had to get up early to work a health fair and to represent the organization for which I work. I woke up with a little more than moderate endo cramps. Noticed no difference in them, popped two of my pain meds and continued with getting ready to start my workday. Got to the office right on time, immediately began working on collecting all I needed to take with me. . .all the while feeling physically not that bad, my new norm.

Then came time to pack up my car. I locked up the office, and put my rolling cart into my car, no problems. Then the first inkling of not feeling well struck me. It began with just a feeling of being flushed. Felt like if I simply sat with the a/c running I'd feel better. Got in, turned the car and a/c on, blasted that cold air on my face. After only a few moments I knew something was about to happen. I got out of the car, took a few steps and fell to the ground with a deep, excruciating pain radiating from deep in the middle of my chest and back toward my right upper abdomen and continuing to my mid to upper back. I had sweat dripping all over my body, down my face, all over my chest and back. I was overcome by nausea, thought I was going to, and even tried to, puke a few times. I had no idea what to do. I was absolutely terrified as I could feel my heart beating throughout my whole body- felt it really strongly. I felt like I was having a heart attack. Luckily I had my cell phone in my pocket because at this point I was unable to move much, much less get up. 

Grabbed my phone and called a friend of mine who I knew lived close to where I was and who I trusted to help me. I was writhing around on the asphalt of the parking lot of my work. Within minutes she was there with me rubbing my back as we developed our plan of attack. I KNEW this was something serious that required emergency attention, but not necessarily a 911 situation. We decided she would drop me off at my house then drop off the materials to the booth I was supposed to be working and then come back, reassess and go from there.

The next two pictures are photos I took while I waited for her return. It was really the most painful experience I've had, not to mention scary. My cat totally knew it too- he immediately laid over my chest and began licking my face. He stayed with me until my friend returned. 

Here is my protective little nurse kitty, Tink.

 I love him so.

When she returned nothing had improved, though the chest pain had subsided, I was still writhing in physical pain, tears falling, in absolute misery. We decided to go to our local ER, though my medical group and doctors are about 30 miles from me. I couldn't imagine doing the drive in that state. I packed my softest blanket, changed into comfier clothes, grabbed a water, and we were on our way.

Below is right after they gave me my first morphine injection- which helped but didn't completely take away the pain- complete agony is the only way to describe how I felt.

And then began the tests: blood work, urinalysis and an ultrasound. The imaging showed some thickening of my gallbladder, liver. . .which they thought was caused by gallstones. I was then informed that I would need to be transferred to Cedars Sinai, the hospital where my doctors work. Not only that...but I had to be transferred via ambulance -yikes!! But the doctor insisted that ambulance transport was "medically necessary"... and again, we were off.

This first pic is me, not so patiently waiting for my 'rig'. Still in excruciating pain and nausea at this point and fearing surgery to deal with the gallstones I was led to believe I had.

Here I am all hooked up in the ambulance.

 And let me just say:

Nausea + Ambulance ride (backwards) = torture

And the view out the window on our way down. My ambulance drivers were awesome, that was a big plus. We listened to music pretty loud and really had some great conversation.

When I arrived to the hospital, my room was all prepared which meant no ER, no admitting, no waiting, AND my room had this awesome view!

Not only the nice view, but a nice flat screen tv with a variety of channels, and a bunch of free movies to watch and nice artwork. I was very happy with this private room.

This is one of my several ivs I had during this stay. I was impressed, each nurse got it right with only one try, normally I'm a very hard stick- that was a relief.

This following pic is during my first night, woke up in excruciating pain, and of course hours before my next pain med dose. I cannot yet find the words to describe how much my body was hurting, but I think this picture does a pretty good job of speaking for me.

While at Cedars I had: an ultrasound and doppler done of my kidneys, bladder, liver, gallbladder and pancreas; x-rays of my cervical, thoracic and lumbar regions of my spine; and an MRI with contrast, countless blood tests for God knows what.

I had a team of four doctors and one care manager. I informed each of them of my endometriosis and that I had begun taking Lupron therapy a little over a month ago. They all shrugged me off saying neither my endo nor my Lupron could have anything to do with this issue. They were split down the middle as to whether they thought the liver or gallbladder was the culprit. For some reason I was compelled to tell my doctors repeatedly about my endo and Lupron therapy-- I KNEW IT!!! (My endosisters know how this goes: I think the second you say you have endo is likely the same second that doctors write you off). They repeatedly shrugged it and me off. 

I had stayed in the hospital long enough that they gave me a new gown to change into and unplugged me so I could shower and wash my hair. It is amazing how good it feels to shower and to be clean after so long of just laying there. And they give you an option of having a back rub when you want to go to sleep to help relax you-- lemme tell you I hit them up on that every night! It was very nice.

I had several visitors, most at one time!! That was very enjoyable: Karines, Jamie, Angie, my mom and Cis, and the night before Stacey came to visit. Stacey brought me a hospital survival kit that was so awesome: a cute tote bag filled with a sketch book, markers, colored pencils, a notebook to write in, erasers, glue sticks, pretty papers, scissors, crossword book, a funny book, root beer!! Very useful to avoid boredom.

These flowers are from Jamie and Angie, they definitely lifted my spirits with my favorite colors and some of my favorite flowers.

 They are perfection.

And Karines brought me some treats! My favorite, the most delicious cronuts: blueberry, maple& bacon and cinnamon sugar. 

Life-changingly delicious I tell you!!

I was even lucky enough to have my recently washed hair French braided!! I love having it braided, definitely made it easier to deal with while in the hospital.

So... what was wrong, you ask after all that?!

My liver is inflamed and my liver count is 4 times normal and then some -- what is that coming from or causing that, you ask??

No less than the therapy that I've used recently for my endo...gee the same thing I had suggested several times only to be shut down, frequently in addition being told that that was a ridiculous thought. Huh! Well, I've only been in my body for almost 31 years now, so what do I know?!

Unfortunately I had a 3 month injection of Lupron done January 3, so there is still like six weeks or seven of that being strongly present within my system. I cannot therefore do the following injection as we had planned. 

This is where my emotions come into play. I'm absolutely devastated that this has happened, for so many reasons:

~I watched my dad die in the hospital, wearing the same patterned hospital gowns that I had to wear, very uncomfortable feeling!

~ The treatment that has finally been successful has really fucked up my liver 

(sorry but that is the only word that works)

~ It makes me angry "just" having to go through all of this. Isn't having endo for 15 years and to have a hysterectomy at a somewhat young age enough of a toll to pay?!

~ What will happen to my body while that drug remains in my system?

~ I'm terrified of what my next ob/gyn appointment will entail...what news will I get?

~ I'm scared of the recovery from this. I'm absolutely exhausted. ALL THE TIME, nauseous, in pain, hot flashing, having chills, crying, sigh. The doctors said it could take several weeks to several months to get back to my norm.

~I am scared of what just happened to my body happening again. I had just started feeling my body, feeling safe in my body and I feel quite a bit further away from that feeling now

Wow, writing this blog has taken me so much longer than it normally does. 

I am absolutely exhausted, so I'm going to hit the sack with my kitty.

Thank you all for your love and support during this most difficult time. I LOVE you all.

And to my endometriosisters, I hope this finds you painfree, enjoying your lives, as we should be able!!

~namasté.