Blue October, Picking Up Pieces

It’s Sunday. 7 am. Been up for hours. My love got called into work so I helped bundled him up and get him gone. With a kiss, as always.

I start facebooking to see what’s up or what have I missed but the village was super quiet. I am in so many medical Facebook communities that it’s rare it is quiet!

Ok- bed, huge cup of coffee and music… maybe some more snoozing? One can hope, anyways.

Music. Yes, please. I dig into Blue October. I have always loved this band but after the birth of my daughter, I had such massive postpartum depression that their 2006 album, Foiled, was my go to. It spoke to me and I loved all of it.

I haven’t followed music like I used to so this morning was a rare gem. ♥️ I also rotated some laundry- I hope to actually fold and put it all away. I said ‘hope’.

I finally land on Picking Up Pieces, by Blue October.

Oh man. I’ve been crying ever since. It’s a good release and one I have needed for a couple weeks now but damn it.

I love this Version: Acoustic- Picking Up Pieces

No matter what you’re dealing with- mental health issues or medical issues. OR maybe, just maybe… Medical issues that cause mental health issues… ?

What.the.fuck.ever.it.is. ‘But, I still walk on.’

Here are the lyrics:

I really need to talk with you
I keep stepping on the vein
That keeps my lifeline flowing through
I wanna be your perfect stick of glue
But I don’t feel perfect at all
Sad and insecure flaw
I find it hard to hold conversation
I get sweaty sick and I wanna walk away
Its not you its strictly me in this situation
I’m wondering will it ever go away…just go away
Sometimes I feel like weeping
Awake and when I’m sleeping
Perfecting how to put a game face on
This puzzle I’ve been keeping
Has been in hiding creeping out the closet door
Spilling out onto the floor
How long will I be picking up pieces
How long will I be picking up my heart
I’ll be as honest as I feel
I’m getting more paranoid and I’m hearing things
And they never turn out real
It feels like my heart is made of pure steel
It’s just so heavy all the time
Yea I’m scared of death
And I’m scared of living
I gave up on the past cause it’s unforgiving
I misplaced my trust
I watched my word begin to rust
I’m a balloon about to bust
I need a place for reliving
But sometimes I feel like weeping
Awake and when I’m sleeping
Perfecting how to put a game face on
This puzzle I’ve been keeping
Has been in hiding creeping out the closet door
Spilling out onto the floor
How long will I be picking up pieces
How long will I be picking up my heart
How long (in another space and time)
Will I be picking up pieces in the corner of my mind
How long (its getting oh so hard to find)
Keep picking up pieces in the corner of my mind
But I still walk on

My week of more fucked up firsts!

It’s been a very long week. I haven’t sleep very well this week. I felt very tired when I woke up on Thursday but since I was awake before the alarm went off, i decided to just get moving for the day. About 30 minutes after I woke up, my stomach starts hurting, bad! It just got worse and worse. It felt like it was out of the blue and then all the sudden, The left top abdominal wall was actual moving on the outside of my body and very painful. I could ‘see’ it cramp… odd but then…. Ouch and ugh. I can tell where this is headed. I stay close to the bathroom.

In the three hours it took me to get ready for work, 2 of those were spent on the toilet. Ugh- what ever, I’ll just roll with it, get it all out and then head to work. I’ve suspected this was coming because the ‘left SI joint VS garage door handle’ locked the entire left pelvic floor. But only the left side. I should have gone to the ER last Thursday but refused (as any true chronic pain patient would do). I knew then I was having massive issues moving the intestines because my stomach was hard to the touch.

I managed to get The husband out and then me and the kid up, dressed and out the house- not only in one piece but no fits and no fights! Even after the morning I had.

Anyway, I make it the 25 minute drive into work and BAMB- a massive stomach cramp hits and I am literally doubled me over in the parking lot at work, in my car and before I knew anything, I was incontinent of bowel. I sat there until the intestines stopped cramping and then took off to the restroom.

I can’t even pretend I was okay so I won’t. I cried. In the bathroom, at work and It’s ONLY 8am. I have a full day at work and zero way out of it. But more than that, what in the fuck would I do at home besides beat the living shit out of myself for having no control to stop the events of the morning.

This year has been some seriously fucked up firsts… in no particular order: a first to wet the bed (at my sisters, I might add- not even my own bed) during a wicked interstitial cystitis flare. My First spontaneous orgasm occurred climbing in the truck. My First true bowel incontinence. My first career loss. And, The truly sad thing, these firsts I’m talking about have all been followed by a second or third… these assaults come from all sides. They don’t stop. They haven’t stopped for a long time.

These medical issues are spiraling out of control. If I can’t find the core auto immune issue, I’ll only ever chase diagnosis after diagnosis. I’m tired of begging for help. Physician oversight is next to impossible to find and if I do, they’re SO subspecialized that it’s hard to get them to pull out of the weeds long enough to help me see the big picture and how what they do for me IS related to the issues I’m experiencing now and how it all fits. I need a rheumatologist now! Omg- in Tucson, that’s gonna be flipping impossible to find. Endocrinologist is the other doc on my list to locate. Anyone got any good ones in Phoenix?

I’m tired. I thought the darkness would close in on me if I became incontinent but a fellow PGAD sufferer told me I have options if that does happen so the darkness is receded a bit. Still a bitter truth of my future if I can’t find the root cause.

One foot in front of the other. That’s how I do it.

#OldGirlintheEndoGame #suckitendo #endendo #endostrong #PGAD #PGADbadass #PGADisreal #pudendalnervepain #endometriosis #pelvicfloordysfunction #interstitialcystitis #MMJpioneer #almostopiatefree #marijuanapatient #TeamHibner #TeamHinberGirl #TeamDsouza #refuseLupron #anxietyanddepressionhurt #Allodyniaawareness #nervepaineverywhere #damnitsomethingisstillverywrong

🌻🎗

The darkness…

…sometimes, all I can see is darkness. Chronic, massive pain kills all the color in my world. It changes the sweetest sounds into the worst screech. It robs the taste and smell from my senses. Everything is eventually dulled until it just fades to black. That is what the hopelessness of chronic pain looks like for me. A slow decline where I feel as if I am drowning in a pool of darkness.

I’ll be the one to say it. I don’t necessarily want to die but I’m sick of living like this. If that means I die tomorrow, I’m okay with it because I am tired of living in this darkness. But let me explain what this means.

No. I don’t need to be admitted.

No. I’m not crazy.

No. I haven’t ‘given up’.

No. I’m not hysterical.

No. I don’t want your pep talk.

~~~Seriously- save it.

No. I’m have not planned my death.

No. I have not set a ‘date’.

No. I will not apologize.

So…

The darkness I’m referring to is the blackest when I don’t have a ‘Next’ plan. Honestly. I have only survived this far by always looking to the next treatment option. What’s the back up plan? A next step. A process on what to do next. I’m not asking for anything that everyone else wouldn’t want if they got to walk a minute in my shoes. Not a mile, just a minute!

It’s been a rough go. Not gonna lie. The future for me will always be spent trying different treatments. It’s a series of trial and error processes and constant movement of trying new procedures. I feel this shift where it’s a fade to black each time I exhaust another doctor or a new treatment fails.

I’ve had this written and edited and rewritten for a couple months now. I debated not posting it at all but it needs to be said. I need to say it for me and I know my fellow PGAD warrior Hope and Fellow IC warrior, Tori are also struggling with the same deep darkness. Their recent struggles have given me the strength to finish this blog. I love you ladies and I thank you for sharing your darkness with me. It makes mine less scary and, some how, less dark.

Just because I see and feel, taste and hear darkness, Doesn’t mean I am going to kill myself. It means that I just want to live pain managed. That’s really not too much to ask for.

Xx

Lilly Sue

Down the rabbit hole, I go.

I’m back in familiar territory… one full of pain. I’m so sad to say that the pain is almost overwhelming tonight. One injury… one, smack in the SI joint and I’m literally back in overwhelming pain.

The pelvic floor is so tight. The bottom of that rabbit hole looks like this: Problems with bowel movements again, nothing in OR out. Urinating 50+ times a day! The radiating pain down my legs and numb toes. This is a colorful landscape of angry pain combinations. One I hate to feel again.

I feel SO sad to be here, again. Seriously. Never take good days for granted.

Hibner has added to his clinic schedule- I’m blessed to have been tucked nicely into his added day in Mid December. I’ll apologize for being unreasonable about the MRI and actually talk to him about this damn diagnosis of PGAD and maybe try to tie all these pieces together in my head.

I also started HRT again. I know… I swore I’d never do HRT but, I’m not doing so well off it. My blood work showed estrogen was less than 5 and un-reable! I had pellets implanted last week and was given a prescription for progesterone. Blood work also revealed my thyroid is very low. Even though I did lose more weight, I’d gotten a couple more pounds on me… trying to push thru and eat food.

*back to the toolbox for pain relief!

Xx

Lilly Sue

NO.o.ooo….ooooooo! I’ll be in the corner, crying.

I’ve just had another Spontaneous orgasm. Right after telling Dr. D’Souza, pcp, That I’ve only had one, awake-spontaneous orgasm… I fucking have another one. Not 30 minutes later.

I leave this appointment,…[[[where we discuss my job, family and personal crisis levels… why I’ve lost more weight… this damn SI Joint injury, the next appointment with Hibner, the PGAD diagnosis…hard appointment but as always, Dr. D loves me and has believed me since day one. I walk out feeling like I’ll make it. ♥️*sigh*~ such a simple gift of understanding- Thank you, Dr. Netley D’Souza. You never left my side. ♥️]]]…and I’m in a hurry as I’m gonna meet my bff at court. She has to testify against her, soon-to-b-ex that assaulted her. I was in a hurry and didn’t want to miss court.

I get a last minute text that her court address is different. I parked close to the back of the new court house and plugged a ‘walk’ into google maps. Wrong idea. I got so turned around and then so upset because I didn’t want to miss court… I got lost and upset and frustrated and I was in a super fast hurry… walking fast… bam- another spontaneous orgasm.

Fuck me. I literally relaxed my body, stopped walking fast and just cried, huge-crocodile tears… walking slowly across downtown…. privately and silently riding out a painful and unwanted spontaneous orgasm.

Let’s just say, that SI joint injury was NO joke. I knew that it had set me back.

But…

WOW! Back to Unwanted spontaneous orgasms?

F.U.C.K~M.E!

I tried to call my love and cry to him but I can’t even say what happened out loud.

This is a hell on earth that I just can’t reconcile deserving in real time. I think I’m crying harder now than while it was happening.

One small bump causes massive ripples of pain.

So, I posted a couple days ago that the garage door handle smacked into my left SI joint. See red where I initially felt pain…. and the SI joint is in black.

I saw a starburst of pain. Literally. Pain. The pain that hits all the senses at once… it steals your breath, your vision & your attention span. That’s just the instant pain. After the initial starburst I was surprised I was still standing. Tears in my eyes I thought to myself- ok… maybe I’ll be okay. I went about my day and finished all I wanted to do.

Then, bed time. I lay down and the second I relax my body, the first (of a night full of) Charlie horse starts… ripping through my pelvic region it’s intense and frustrating. I was exhausted and ready for bed. I needed to sleep but was unable to ever rest. *sigh*

Here is the agonizing part of all this crap…Today, 3 days after knob vs SI joint… I’m bruised. Very tender and I’m having a hell of a time with random Charlie horses ripping through the pelvic floor. I don’t know if I chipped a bone or not and even if I did, it won’t matter as there isn’t anything to do about that. BUT- My pudendal neuralgia, PGAD and IC are all playing off the Charlie horses… the pain is ridiculous.

The constant reminder that my body is at war with itself gets overwhelming. It makes me sad. My heart hurts and I’m tired. I left a message for Dr. Hibner. I know the next Botox session isn’t until the first of the year, and there isn’t much he can do now. But maybe, just maybe… he has a suggestion.

Oh Crap! Duloxetine is Cymbalta

I wanna cry. I just realized that I was on Duloxetine for the last 5 years. That’s generic cymbalta! Damn it- when I stopped taking my Duloxetine (couldn’t afford the copay and couldn’t see it helping with my PFD and frozen pelvic floor… so, another drug I don’t need). Plus, the gastroparesis flares really follow stress and when I’m a flare, taking pills makes me sick. Gastroparesis is its own post so that comes later…

My pcp, Dr. D’Souza, gave Duloxetine to me for nerve pain. Our ‘generic’ classification of some of my symptoms, and need for pain relief as well as antidepressants, despite the fact that I didn’t have a firm diagnosis.

So, forward 5 years later, I decided to self wean off Duloxetine. It never dawned on me it was Cymbalta. Once my body cleared the drug, that’s when my PGAD symptoms flared big time! My first, long lasting spontaneous orgasm as an adult. 😔😢

*sigh* I just want to sob. It’s hard to not feel like the very arrogant medical community has not only failed me but they’ve set me up!

But, saying Dr. D set me up isn’t accurate. He’d never do that and to be honest, he is the one doctor that he believed me since day ONE! He didn’t set me up.

So… does that mean…

I failed myself….??………???

I realize that by not understanding my body and where the pain was coming from has truly created many incorrect treatments and dismissals by physicians. But on the other side of that statement is this one: the physicians never helped me understand it. They never said a word about Pelvic Floor Physical Therapy until 5 years ago and then, my therapist did NOT understand what I actually needed. I can provide example after example to prove how the medical community failed me and how I failed me.

This 30,000 ft overview makes me sick. I literally want to sob.

It’s time to come up with a list of things every endometriosis patient should be required to do! Here is my list…

IMMEDIATELY, at suspected endometriosis, patients should be referred to specialized classes across many disciplines within the medical community! Let’s build pain relief toolbox’s right away and let’s pack them first and foremost with the logistical parts of the body! I love the Orange is the New Black, 2 pee holes?! episode! LOL- it’s the perfect reason to explain why women need to be sent for PFPT! We must know, Is it the bladder or the pelvic floor? Tendons or ligament pain? Fascia Pain? Educate yourself in the body.

Of course, I’d be here for ever outlining what’s needed right away and as I continue to type, I realize so I’m going to give it an entire post, soon but I’d love to hear your thoughts on the subject. Drop me a comment or email@ oldgirlintheendogame.blog or via Facebook!

~~~

Anyways- be kind to yourself, be open to new treatments and learn all you can about how YOUR body works. Don’t be your own worst enemy and don’t let them dismiss you! Piece of cake, right!? *said NO #endowarrior ever! WTF… lol

Xx- HUGS!

Lilly Sue


#OldGirlintheEndoGame #suckitendo #endendo #endostrong #PGAD #PGADbadass #PGADisreal #pudendalnervepain #endometriosis #pelvicfloordysfunction #interstitialcystitis #MMJpioneer #almostopiatefree #marijuanapatient #TeamHibner #TeamHinberGirl #TeamDsouza #refuseLupron #anxietyanddepressionhurt #Allodyniaawareness #nervepaineverywhere #damnitsomethingisstillverywrong