one week gallbladderless

Well tomorrow marks one week that I had my gallbladder surgery and liver biopsy done during my second hospitalization. I was in excruciating pain, very scared and worried that pain relief wasn't REALLY coming my way.

Drum roll please....

Brrrrrrrrr.......

I have been in only minimal pain since my surgery, and surgery-related pain only. I cannot even put into words what a relief it is not to be in chronic pain. Even when in the pain y don't realize how bad, or how constant it is until it is gone and you experience relief. It has been a glorious week recovering from surgery.

That's not to say it has been a breeze. I am uncomfortable sleeping, can't quite find my new right position. Sneezing is excruciatingly painful. I have had flares of pain that have brought nee to tears. That all being said, none if this is anywhere near the pain I was in before surgery. Plus this is ALL related to my very recent surgery, so this is actually HEALING pain, that makes it all the more tolerable-- 

KNOWING IT WILL END SOON.

Anyhow I spent a great deal of time this past week while resting at home with my kitties working on inspirational quote image things that I'm going to call ohmisms. They have been the perfect activity for resting, physically, emotionally, spiritually and have helped me to further foster this new place of health within which I find myself. I plan on including a vast array of these in the book I'm working on, but wanted to share some here.

Well, it is very tiredly and gallbladderlessly but with less pain that I sign off and wish y'all a great evening.

Love, love. 

P.S. if you have had gallbladder surgery or another laparoscopic surgery done and have a sleeping position suggestion please please please comment, it'd be greatly appreciated.

Collateral Damage: A Week in Review

It has taken a long time for me to have recovered to a place suitable enough to write from: I'm so incredibly grateful to be in that place now.

Last Monday I really wasn't feeling well with nausea and the gallbladder/liver pain that had reared its ugly head. The next day however I was in the most EXCRUCIATING pain. I couldn't get in a positron to relieve the pain, none of my medications were even taking the edge off, I was uncomfortably bloated, nauseous. Of all the years I've suffered from endo I'd say this day was hands down the most uncomfortable I've ever been. When pain gets to that level, fear sets in and absolutely doesn't help. I was crying, moaning, writhing around in pain.

I called my doctors and nobody could see me and my primary, who I really like, told me to go to urgent care. . .unfortunately that meant around an hour long ride. My friend was able and willing to take me. I crawled into the backseat of her Benz and we were off. Luckily traffic wasn't that bad and we made it relatively quickly. The urgent care sent me to the emergency room at Cedars Sinai. 

The wait in the ER was really disgustingly long, however, I'm so very lucky and am connected to someone that works there and got a room in a half hour!!! 

There was absolutely no relief until the first drop off dilaudid plopped into my system and even that didn't take the pain away but it was strong enough to take the edge off. By now it was nearly midnight, we didn't know yet if I'd be admitted or sent home. . .so my blessed friend stayed with me.

One funny story from our emergency room visit: I had to do a urinalysis and was hooked up to an iv at this point. Since it was taking forever to get someone to come unplug me, my friend helped me into the bathroom, she held my iv pole and held my gown up while I held the pee cup, it was nearly filled and I dropped the damned cup in the toilet!!! We were both laughing in hysterics at the ridiculousness of this situation. She ran and got a second testing cup and we were then ok and I completed the test.

Then I was informed that I had to have a cat scan with contrast. They tell you the drunk isn't that bad, well when you're already fighting the urge to hurl it isn't easy to drink that gloppy stuff...but ya gotta do watcha gotta do.

The waiting was really one of the hardest aspects of the visit and not knowing yet if we were staying or going...

They did decide upon admission; however, the hospital was full and so I was moved to some holding area that was really anything but comfortable. The beds aren't normal hospital beds but the gurney kind and there aren't separate rooms but curtains to close off your area. My friend was about to leave, and now it's 5am Wednesday morning...when there was some ruckus and a patient started going nuts, so much so that security had to respond- 8 security guards had to come take care of the situation. I was crying and exhausted. The nurses there did then move me to a corner that was so incredibly much more quiet than the space I was in before. My friend decided to stay with me, for which I was incredibly grateful.

It was a very long, hard night. So much pain, so little relief. One thing being in this shared area did for me was show me how crazy people are and that they completely mistreat their nurses. I couldn't believe it. I was in the worst pain of my life but there is no way I would be rude to my nurses, they are there to help after all. I made a conscious vow then to not be rude to my nurses, and I always said thank you and please.

I got the most beautiful news that I was being moved to a room...which was preceded by the news that I would be having gallbladder surgery. I'm not sure which bit of news was more exciting at that point!

A fall precaution?! Ya don't say LOL!

Coincidentally after I was in my room for a while I had some beautiful miniature roses and the cutest stuffed teddy bear delivered to me. I really really appreciated having this softness to hold onto during this painful and scary experience.

I had the gallbladder removed along with a liver biopsy Thursday afternoon with laparoscopic surgery resulting in four incisions. Immediately following the surgery while in the recovery room I was in truly excruciating pain. I had a moment of regret regarding the surgery, thinking the pain wouldn't stop.

I was crying in pain in the recovery room. They asked if I wanted my mom to come back. I said yes and then I had an absolute panic about it being upsetting to see me like that, considering what we just went through with my dad. They brought her back and I was relieved to see her but cried a lot, almost in a frenzy panic about feeling bad about my dad. The crying and emotions of course made the physical pain worse. She went back into the waiting area until I was taken up to my room. 

I had the most amazing experience in the recovery room after my mom left, while experiencing severe pain it seemed like time stopped for a moment and these two life-changing thought forms dropped

 into my body and soul:

I don't need to feel this pain.

I don't deserve to feel this pain.

From that moment on, the rest of my hospital stay was a breeze. Now that's not to say it was painless, but it was definitely different. I'm still feeling pain right now, but this pain is only incision and surgery-related pain, NOTHING like the excruciating pain I was experiencing before. Not only am I not feeling the pain I was feeling almost constantly before, but I'm feeling feeling feeling the absence of the pain, which lemme tell ya is a beautiful place to be!!

I had to get up and walk the evening of my surgery. I had no problem with this. I walked with my nurse's aide to the end of the hallway and asked her to take this silly picture of me, the theme that day for the ENDOMETRIOSIS AWARENESS MONTH photo challenge was:

DANCE

I felt amazingly good and have since.

Below is me when I got home. I went in the hospital Tuesday, had surgery Thursday afternoon, came home Friday morning. 

Everyone who has seen or talked with me has noticed the difference within me. I feel it. It is amazing the differences find going through life in chronic, constant physical pain and then NOT in pain. I'm experiencing occasional twinges of pain from the surgery but it is NOTHING like before. And each morning I can feel my lungs able to breathe more deeply. I feel as though this surgery and really this whole experience over the past two months, including countless tests, two weeks in the hospital, an ambulance ride, overwhelming fear, relief, tons of tears, surgery and now recovery resulting in a reboot, if you will. 

The day after I got home I had a manicure and it's my favorite I've ever had done. Even just comparing the pic of me exactly one week earlier after my manicure shows a big difference:

Last week.................and this week.......

Signing off this afternoon in my new healthy, gallbladder-free body, continuing to ponder and discover different and new aspects of this change and my experience.

Thank you all for your support while I've been going through all of this. It means so much to be so beautifully surrounded by such an overwhelmingly large amount of LOVE. I look forward to continuing to share my journey with y'all. 

Also if you're one of my endosisters, or happen to suffer from another chronic condition or illness, please try, as a gift to yourself and your body, to give yourself these affirmations:

I DO NOT NEED TO FEEL THIS PAIN.

I DO NOT DESERVE TO FEEL THIS PAIN.

It might make all the difference for your as it has for me.

Sending big loves to everyone.

P.S.a big thank you to my mom who has been such a source of physical, practical and emotional support through all of this.

I betcha don't know anyone like me!

So I'm willing to wager a bet...that you, whoever it is reading this, don't know anyone like me...

Now, why exactly is that, you ask? What in the world makes me so special or unique as to make such a radical statement?

Well, lemme tell ya:

I AM A 30-YEAR OLD WOMAN WHO HAS BEEN THROUGH MENOPAUSE TWICE, HAD A TOTAL HYSTERECTOMY AND TAKES BIRTH CONTROL PILLS....

Now...feel free to correct me if I am in fact wrong and throngs of other people come rushing into your mind that are like me

 in those regards...

My appointment this last Friday was really devastating and I'm not really ready to blog on that yet, it is a long work in progress and 

I'm not done yet...soon.

Now, to cover my weekend, the second weekend of March, ENDOMETRIOSIS AWARENESS MONTH. So of course it began with my second ENDOMETRIOSIS AWARENESS MONTH manicure. I'm so elated with how my nails look. I'm really growing to LOVE yellow nails. Very grateful to my amazing manicurist for this delightful manicure, can't wait to see what next week will have in store nails-wise. 

There aren't that many aspects of ENDOMETRIOSIS that are fun, cute or exciting so I plan on milking this as much as I am able :)

Because of the emotional hangover I was experiencing yesterday I knew I needed to escape for a little while. Funny that an adventure meant to distract or lose myself for a bit in actuality helped me to more uncomfortably, less frantically land back within myself and my body. I'm very lucky and grateful to my dear friend who volunteered to go on this pilgrimage up north- I knew I had to go to this particular place: Morro Rock, about three hours north of where we live. I couldn't physically do the drive due to medications and physical discomfort, oh and the tears falling down my cheeks continuously for the duration of our drive.

This first picture is from a store we stopped in and explored on one of our stops along the way. I ended up buying the most amazing scarves that can be buttoned into several different styles and be worn as a vest, shawl, scarf, cardigan-type thing, super cute -- next to the scarf things was this beautiful, perfectly simple and serene Buddha display. I took one breath here that changed the tone of my trip from that of running away to that of heading back within.

After that we went to Bubblegum Alley. I always take friends there when passing through. I never react with less disgust than my first time there, it is decades and layers upon layers of chewed bubblegum pressed into this brick wall. It disgusts me and I love it at the same time LOL.

Finally we made it to our destination, Morro Rock, and the magical seawater that flows there. I feel so at home at any coastal areas, but none more than Morro. The rock and the water is the perfect combination for me to get back into my rhythm in such a nurturing, peaceful and beautiful way. I love this picture so much. I feel like it just says everything that was gained and/or accomplished on this trip. 

I AM BACK IN MYSELF

I AM SAFE TO BE BACK IN MYSELF

MY BODY IS SAFE

IT IS SAFE TO FEEL GOOD

IT IS SAFE TO BE A WOMAN

Yesterday was March 8th and the theme of the ENDOMETRIOSIS AWARENESS photo challenge was that of:

CHANGE

This was yet another somewhat easy theme for me to choose a photo. The photo on the left is of me crying, feeling defeated, hiding in the bathroom right after my devastating Dr appointment Friday afternoon and the peaceful, natural and at-home in myself pic on the right was taken yesterday- almost exactly 24 hours later. I don't think anything else could say CHANGE more than this.

Then this morning I woke up in excruciating pain from endo and Katie has returned. Luckily I have my very own magical, Buddha cat to cuddle with and to offer me his healing heat and LOVE. We spent several hours molded together with comfy blankets, loving each other and him healing me.

My mom offered to take me out for an ENDOMETRIOSIS AWARENESS pedicure. I put my wrap on and realized just how much Katie had grown/returned. That is really an emotional discovery, aside from the physical pain that accompanies her.

I have spent the remainder of my day with Tink, my baby, both lounging and doing laundry. Hoping I wake up tomorrow finding myself feeling physically relieved from the cramping, pulsing and pulling pain.

Today is March 10, and the ENDOMETRIOSIS AWARENESS MONTH photo challenge theme is:

the + now

It feels perfectly related to my experiences yesterday. And is the perfect theme to lift myself back up and out.

I found this image from a breaking session I had several months ago. I wrote on it my connection to the theme of the day:

sometimes our

greatest pains

later become

our greatest strengths

I do truly, deep down to my ENDOMETRIOSIS-riddled gut believe that statement. I look forward to the day when I'm feeling better and I'm able to give back the LOVE, wisdom and support I've received from each and every one of my ENDOMETRIOSIS sisters. I love them (you) all. It is such a strong bond to be had. 

I'm grateful for my weekend in its entirety.

Physically I feel awful awful awful BUT I do feel more settled and less desperate than I did Friday afternoon. I'm not sure when my healing or relief will take place but I'm no longer hopeless about it EVER coming my way.

Thank you all so much for reading my blog. I appreciate it in ways I cannot even describe.

~om.

Love, love to all.

ENDOMETRIOSIS AWARENESS MONTH day #6

Today is the sixth day off the ENDOMETRIOSIS AWARENESS MONTH photo challenge and the theme for today is:

PAIN

Definitely not a hard theme to come up with an appropriate picture for those with ENDOMETRIOSIS.

This first picture was taken this morning while I was at home during my break. I needed my baby Tink and there he was, being such a great cuddlebug. He also gets his favorite ear and head scratch in return, with tons of kisses. Today I've been in a lot of pain, a ridiculous amount of pain, but I made it through my work day, now am exhausted to a whole new level.

The following photo is the one I'm using for the theme of the day. I feel it perfectly exemplifies the theme. It was during my hospitalization a few weeks ago. In the middle of the night I was in such an incredible amount of pain. I feel this photo says more about pain than I ever could with writing. I like to take almost daily pictures to have a photo journal of sorts that I can share with my medical professionals when needed.

The following image is something I saw posted in one of my Facebook support groups and it really made me laugh...and most definitely want one of these...wish I could hide away for a while.

I also saw this sidewalk chalk note on Facebook and liked it for the feeling of it. It feels perfect for endometriosis awareness month and I definitely need to see it myself.

I struggle with loving myself while being in so much pain that then can cause anger, at my body and myself.  Something I'm working on.

Tomorrow I see my ob/gyn...it is a crucial appointment made even more so, by the pain I've been experiencing almost everyday this week. I posted a brief, yet detailed synopsis of my endo and surgery history on a Facebook group in which a few of the world's leading endo experts belong. I was seeking advice for next step suggestions. This is one response I received, which led me through a variety of emotions and reactions:

Hello Stephanie. Based on your symptoms it sounds like part of your problem was due to your uterus (endometriosis does not result in heavy uterine bleeding but a related condition, adenomyosis, can). Removal of the uterus will have resolved this problem but the big question is the remaining endometriosis.

Endometriosis can affect women in very different ways. The severity of the disease and the symptoms a women experiences can vary widely and may vary over time. Most women have superficial disease only (it only involves the peritoneum, which is a saran like wrap that covers the internal organs). Some women, however, have an invasive form of the disease, which can invade the pelvic organs, including the bowel and bladder. You mention having had rectal bleeding. Was this bleeding cyclical? If you are (or were) experiencing cyclical rectal bleeding this is a sign of invasive bowel disease and would require specialist surgery with the support of a bowel surgeon.

The surgical treatment of endometriosis is very hit and miss and most surgeons do not have the skill to remove all the disease - prognosis and outcomes vary widely between surgeons. Instead most treat endo superficially by burning the tissue (sometimes "ablation" refers to burning > you'd need to clarify the actual technique used by referring to your surgery reports). The problem with burning is that 1) it only burns the surface and often leaves any deeper, underlying disease behind untreated causing symptoms to return over time and 2) it is not suitable for use over the ureters, the bladder and the bowels, so if you have disease in these areas it wouldn't have been treated. Hormone therapies like lupron don't make the disease go away and can bring significant side effects (as you have sadly experienced first hand). Often when surgeries and hormone therapies fail to help, the patient is advised to have her reproductive organs removed. For some this does resolve their pain but for others (especially if deep disease is present) pain may persist because even after menopause, the disease remains in situ. The ovaries are a major source of estrogen, which influences the activity of any endometriosis but endometriosis itself can produce estrogen, so even with the ovaries gone, some women continue to hurt. Another concern with removal of the ovaries are the long term health issues premature menopause can bring.

The best treatment for endometriosis is complete removal of the disease via surgical excision. This is a process that only a few surgeons worldwide are able to do. The most skilled surgeons can manage disease involving the bowels, bladder or anywhere else in the pelvic cavity. Sometimes these surgeries can last hours. Long term follow-up of patients who undergo complete wide excision has revealed that the majority of these patients experience ongoing relief of their pain and the disease rarely recurs. When looking for a good endo surgeon, the key is to find one who offers the surgical removal of all areas of disease via excision rather than burning (refer to the file section for a list of suggested questions to ask a prospective doctor). If you are based in California, you may be interested in considering requesting a free record review and consult with Dr. Cook in Los Gatos (www.vitalhealth.com) and there is Dr. Nezhat in Palo Alto who also offers excision. I don't know of any other excision surgeons in the state.

Another thing you can do is seek feedback on previous surgical reports or surgical photos here in the group. Dr. Redwine regularly annotates women's surgical photos fro them if they post them to the group. He is one of the world's leading endo surgeons (sadly now retired but happily still around helping us women). 

*******

I'm so grateful for this feedback and wisdom to have. I am scared of what the road ahead of me holds but I also KNOW I can't stay in this place, so the fear is a major motivator of self-advocating and action.

For now though, I'm under my comfortable and cozy blankets, wrapped in my cocoon warm sweater, with my previous kitty cuddling.

Thank you all for reading.

Ready to sign off.

~namasté

ENDOMETRIOSIS AWARENESS MONTH day #5

Today, March 5th, is the fifth day of ENDOMETRIOSIS AWARENESS MONTH and the photo theme is:

SMILE

So...here was an early morning SMILE

Today the SMILE was definitely not easy coming. I am, and have been in moderate to severe pain and cramping, trying to use my recommended medications as directed, heading pads, stretches, light walking, all to no or very minimal avail. It is very frustrating. The picture below is how I actually really feel. 

This disease truly leads you through the trenches of emotions and mental spaces: 

Fear

Frustration

Anger

Sadness

Hopelessness

Pain

Shame 

Envy

Overwhelmed

Alone

Misunderstood

Panic

Unimportant

I think on any given day I feel a great majority of those as a direct result of the ENDOMETRIOSIS war going on inside myself. Some days, like the last few, I feel like this disease and all of the heavy, uncomfortable and excruciating physical ramifications will take my life force from within me. I feel so very tired of fighting to feel good- and that thought then makes me angry, thus the cycle is born...alas, tonight that is not my point.

So... I digress...tonight I suffered through cramps, excruciatingly bad pain, and took a soak in a warm bath. After my bath while towel-drying my hair I saw just how much hair I've lost over the past few weeks, since my liver and Lupron fiasco. That really is bothering me a lot emotionally right now. It may seem like nothing, especially in comparison to the other life-changing symptoms and issues...but more than the issue itself of hair loss, is the fact that there is one more area of my life and body that is impacted by this disease, and/or treatments I've undergone.

Tonight some truths about my medical path and future have really impacted me tonight. 

And I may as well admit it:

I am absolutely terrified.

None of my "options" seem less terrifying than the other, for different reasons of course. I'm crying as I write this post, realizing I have to somewhat get it together by my appointment Friday morning so I can be as present as possible and advocate as made necessary for myself and MY body.

This quote below I LOVE, especially when thinking about our ENDOMETRIOSIS support groups, all of the ones I belong to are through Facebook- this quote I found so beautiful and think it true of everyone one of my sisters, both those in these groups and those I don't even know yet.

I tried to postpone writing tonight, waiting for me to feel better or until I could write something more positive, but that simply isn't where I am tonight, so I decided to somewhat vulnerably share this: my authentic place, as that is my goal within this blog (to openly share my journey, hopefully raising awareness and lessening the completely unnecessary taboo nature of ENDOMETRIOSIS)

Anyhow, with that I sign off and hope all of my sisters out there are feeling great, or at least good... and another thank you to my readers for taking the time to follow my story, learn a little bit and hopefully laugh sometimes.

namasté all.

ENDOMETRIOSIS AWARENESS MONTH day #4

Well, today got off on a nice start - emotionally and mentally I felt really great. I loved my outfit and was having a great hair day and was ready to take my day...physically I wasn't feeling well at all. I'm really putting a lot of energy into my Caregiver Bootcamp right now, not only because I LOVE every aspect of it, but also because it serves as a productive distraction.

I was relieved to make it through the entire workday. Now I'm home, lucky to be cuddling with my kitty. He always makes me feel better.  

The theme for today's photo in the ENDOMETRIOSIS AWARENESS MONTH photo challenge was:

Yellow

Yellow is the awareness color designated to endometriosis. I couldn't decide between these two pictures, so decided to share them both.

This first image I took last night of myself in the backyard just before sunset as I was making a wish and blowing a dandelion. I loved the lighting in it. I also thoroughly enjoy editing pictures. I REALLY loved how this one came out in kind of a pop art style- loved it. It also feels hopeful to me which is something I try to keep while fighting this disease that strongly and incessantly fights back.

The second photo is of my current endometriosis-themed manicure. I love my manicurist, who is truly like a sister and she's seen me through my disease process. She is truly supportive so it was very special to do this special manicure for

 ENDOMETRIOSIS AWARENESS.

I chose this image from Sidewalk Chalk Project of Facebook. I love it, and know everyone must need a reminder of that every so often. So to all of my readers, in particular my endometriosis sisters. Through all of our suffering and frustration and pain, we need to remember w are not alone. Not only are we surrounded by LOVING friends and family but also by understanding, similarly addicted sisters with whom we are able to connect with through the world of Facebook and other networking sites. I'm also including a beautiful arrangement of flowers I received yesterday. They brought, and continue to bring me such joy, that I had to share with all of you.

Thank you all for reading my blog and for your love and support.