Tag Archives: endometriosis

Cautiously Optimistic

Caudal Epidural +3

I remain cautiously optimistic. I am trying to not get ahead of myself. These first few days have been a dream. I did not think it possible for me to do the things I have done the last two days.

I know that I will have to have more laparoscopies remove any new lesions and such – but the relief is amazing! I know that this relief may not last… But I will take what I can get! I keep crying at the oddest times because I will realize I am not fighting pain. I am going out and doing!

I haven’t been jumping out of planes or diving with great whites. I have been doing things I loved to do in the past before my endometriosis became debilitating. While they may be things you would think I could do while I “rest” from the pain, but what most don’t realize is that pain does not allow you to concentrate. The pain becomes too distracting to do anything you actively have to pay attention to.

I have watched movies, I have been knitting, I have been sitting for hours, I have been walking through large stores, I have drunk beer made from a 130 thousand year old glacier, I have stood during a speech, I have mad dinner (Chicken Pad Thai) – I have been alive!

All without excruciating pain.

If my future holds more needles in my spine, having my bare fanny hanging out for all to see and butt crack band aids – bring it on! I will take anything to help me fight! I may not have a crystal ball but my future finally seems hopeful!

20110905-101007.jpg

Advertisements

Words Hurt pt. 2 – or How Ridiculous People Are

So the the day has been mainly wonderful!  I have been able to do much more than I have been in such a long time.  I actually got to go to my favorite yarn shop and SIT and knit for hours.  I honestly have no memory of the last time I was able to do this.  Granted there is still pain – but there seems to be a muzzle on the rabid beast.

I am trying not to get too excited, because I do not want to be crushed if it comes back.  So, for the time being we are at status Cautiously and Hopefully Optimistic.   (with all fingers and toes crossed; turning at sunrise 3 times west then 4 times east finishing by hopping backwards on one foot).

It was a big day.  I am proud of myself, I am proud of my husband for still loving me, I am proud of my doctors (except for the part when they left me fanny naked up for way too long) – HELL I am proud of my furry babies for being so cute and cuddly.

I came home after my big day and napped.  I didn’t want to push it.  I will do what have done for the last year and half and take it easy tonight,  This entails dinner at home. laying horizontal, maybe paint my nails and watching other people living their lives through the social media(s).

So – I was commenting on a friend/co-workers photo of his cat.  The comments went something like this:

Me: “That is a happy cat”
Friend: “She is getting her tummy scratched”
Me: “Some ladies really like that”

AND this is where is gets ridiculous… And this also shows how brave the ignorant, immature and hateful can become behind a computer …

Errant Asshole: “Some Ladies aren’t even ladies because they had all their reproductive parts taken out”
Me: “Wow, that’s mature.  At least I have more balls then you”

I mean – what are you to say about that?  It is an obviously disgruntled formal employee dismissed from his position by another manager.  He just happens to have a wide aim on his hatred gun.  Usually my friends who are still in touch with him remove these kind of posts quickly.  I know I should have let this one go – but I had to FIGHT LIKE A GIRL on this one for all my hyster sisters.

It is funny that people – but not surprising men – do not get that we are more then walking tits with reproductive organs tucked inside.  There.  It’s said.

And come ON – I was commenting on a freaking CAT PICTURE!  Let me know if you want to step in the ring 😉

Band Aid Butt Crack

This morning, very early in the morning, my husband and I arrived at the surgery center to have my caudal epidural with steroids. Did I mention it was early? Dark early? And did I also mention that I did not have any coffee or pain medication? Yep, you guessed it – I was completely miserable. And panicky.

It was the day – the day I received my self appointed Indian name – Princess Panic Pants. It is also the day I got to begin a new treatment to end my pain. To get to this new hope, there us just one thing standing in my way:

A NEEDLE IN MY SPINE.

Yes, I had talked to all my “had a baby” friends and was reassured countless times that it was nothing to worry about. Of course all my friends had bundles of joy on the other side of the needle. I just had what could be my last big – not doped up – chance to be pain free. This idea made me feel like Princess Panic Pants too!

So, here I am, sitting in in a little curtained room, waiting for time to go “under the needle”. I had an IV line waiting for my “conscious sedation” drugs. I had my “make sure you tie in the back” gigantic gown on. I had my fancy, blue surgery cap on. And most noticeably, I had two shaky hands clamped together so tightly they were leaving nail marks on each other. Yep, I was totally ready.

After an eternity of curtained solitude, I was summoned to… The Needle Room. The sweet nurse walked me in and directed me to get on a table with my tummy of a big fluffy pillow. And then, the gown was parted and gentle, cold hands pull down my panties to my knees. You guessed – naked fanny pointed up for all the world to see.

Where was that conscious sedation!?!?!

Ah, there it is and everything slowed down, but I didn’t care.

“is the sedation on board?”

“yes, doctor.”

“Ok, here we go… Cold cleaner, it will dry quickly… Now you are going to feel some bee stings. Now you may start to feel some pressure…”

Pressure was an understatement! That thought must have been clearly grimaced on my face because one of the nurses leaned down to my ear and said “count to 15 and it will be over – and she was right. It. Was. Over… Kinda. Oh yea, caudal is the area right above your tailbone.

My naked fanny was still pointed to the sky. And apparently there was some, ah, blood clean up on aisle crack. And it took f.o.r.e.v.e.r. After that – I got a gauze laden band aid, on my butt crack. Wow. That is the last thing I thought would happen on this operating room – laughable!

Fast forward to 10 hours later. Here I am, I am fairly uncomfortable and I know have to wait to know if it worked. I started laughing because I remembered I have a butt crack band aide I can’t reach that has to come off tomorrow morning….

“Hey sweetpea….?”

20110902-083420.jpg

Pain, Yes – But I Can Can

Yes, still a lot of pain today, ironically, from pain management yesterday.

Today the pain was like lightning again – and the meds don’t seem to touch it.

I seem to really be struggling to stay positive for the Caudal Epidural on Friday. I really fear (near panic) the thought of a needle in my spine as well as this being my 7+ surgery/procedure I have hoped to be pain free after.

My self worth and image are straight down the crapper due to pain, lack of sleep and feeling like I let every one down.

So – I am putting on my big girl skirts and remembering that I CAN CAN!

I Can function in pain with no sleep.
I Can ignore lightning down my leg.
I Can not freak out at scary spine needles.
I Can still find hope.
I Can love me no matter what.
I Can know I do all my body allows me.

And I can Can Can (in my dreams). Who wants to Can Can with me?

20110830-104230.jpg

It’s a “Little” Surgery

This will be short … I just hurt too badly tonight. I went pain management this morning and met my newest doctor.

Long story short – he did a bunch of tests then started pushing around in my ouchie area. At one point he was pushing his palm so hard on it I thought he was trying to push through to the exam table under me.

He said: pelvic pain is hard to treat. Pelvic pain associated with endometriosis is even more difficult.

I thought: no shit Sherlock

I said: I’ve noticed

So, Friday we are trying nerve blocks. It’s just a “little” surgery. It will be Caudal Epidural Steroid injections.

Don’t be jealous!

20110829-092351.jpg

I Wish

Sometimes, I just want a beer – just one beer. Oh course, I can’t have one because of the medications I am taking. Even knowing this I still want one so badly, I can almost imagine what it tastes like…. I could just jump in!

20110828-091509.jpg
I wish!

Up, Waiting and Hopeful

So, it seems I spend a lot of my time waiting for my meds to kick in to help elevate some of the pain. This morning I was up about an hour before my first dose of the day. It is almost like the pain from the endometriosis wants to make sure I am awake and feeling the pain before I can fight back.

It’s been at least a couple months since I have had some hope about being pain free or at least pain less. I was really hoping that Lyrica was going to be the answer, but it is only half of it. I am happy it has gotten rid of the majority of lightning nerve pain that shoots down my leg. Unfortunately, it has not anything for my original pain.

I am so excited to go to my first pain management appointment tomorrow morning to talk about nerve blocks. It is something I have hope in. It is hard to think I have to live with such pain and I am ready for something new.

I am ready for something to give me hope.

I am ready to do some more fighting!

20110828-091856.jpg

Its a Miracle!

Let me start by saying I had my dreaded doctor’s appointment at the neurologist’s yesterday morning.  I feel like I am just an after thought at this office since most people they see are dealing with things like MS, Parkinson’s, Epilepsy and so on.  Not to mention that when you call in, the staff can be less then helpful (see 7-1/2 Minutes + a Verbal Shake Down  & Take 2 and Call me in the Morning).  So, as you can imagine, my tummy was knotted up by the time I parked by car at the hospital.

I made it into the doctor’s office and went to sign in.  This is when the magic started happening.  I was pulling out my check book for the co-pay and I learn that I do not have one.  There is some kind of credit or something on my account.  Well – that is $25 that will go to the pedicure I didn’t think I could afford.  Then I went to sit and wait.  I was called by the nurse before my butt had become to warm the pleather!  As I walked toward her she said good morning and told by my dress was precious!  Hold crap – this is awesome – I am getting some first class service today.

The nurse goes to weigh me (we won’t discuss those #s) and take my blood pressure.  She says its perfect – 120/80!  Well that is just amazing – not being treated as a second class citizen does wonders!  Then it is time to go sit in the Dr’s office while he talks and takes his dictation for my case at the same time (while a bit a nerving, I always know he has his facts straight).

“You look tired, you aren’t sleeping well”  yes this is true

“Your secondary pain is helped by Lyrica – but the primary pain is still there, yes?”  yes, this is true too

“Well, lets put off surgery a few months and try pain management – I am recommending nerve blocks – is this ok with you?” YES!  YES it is, I will try anything at this point!  I just am so sick of the pain!

“We will make sure they sure they see you as soon as possible”  Holy Crap – It’s a miracle!

So – I get sent out to the nurse’s station to get all my new appointments squared away.  As I sit thinking to myself, one of the nurses is eating her breakfast… and it hits me – I left my breakfast at home.  I must of muttered something and before I knew it a nurse was handing me a cup of fruit, cinnamon roll and mini chicken biscuits.  She had me eat the fruit immediately and packed the rest for when I got to my office.

THEN they get my first pain management appointment for Monday morning.  This morning!  By this point I am looking for the “pods” because this may look like the same doctor and nurses – but these versions seemed to actually care.  It was just amazing.  I walked out into the parking deck with a spring in my step, an appointment card in one hand and a bag of breakfast goodies in another.

They are trying to get rid of my pain!  It’s a Miracle!  God does love me – and it is more than just giving us beer (which I can no longer drink).

Three for Thursday 8.25.2011

This one is going to be quick – just so we don’t dwell on the negative. This week are three things I could totally do with out.

#1 – Endometriosis and all of it’s associated pain. It really just complicates just about every part of my life.

#2 – The IRS. I really don’t think I have to go any further then that one.

#3 – Nervous anticipation for doctor’s appointments. How many times do I have to say “it still hurts”. What part of “I can’t sit for more then 1/2 hour” is unclear? Do I have to break down in sobbing, hysterical tears to get my point across? Not to mention seeing my favorite nurses & office staff!

On the bright side, tomorrow is Friday, football season is around the corner and Irene is not pointing at my town.

20110825-082245.jpg

Poor Decision Wednesday

Today was a long day after a wonderful Tuesday off, it was a rough Wednesday. I will say that every time things got a bit tough I did look down and see my fabulous red boots!

The endo/neuropathy started in earnest about noon. The pain just seems to suck every ounce of energy out of me, in turn, making the pain more intense. It is a vicious cycle fought on a daily basis and today took it’s toll.

By the time I made it home, after ‘putting out fires’, it was more than an hour later then normal. I was so tired. The thought of having to stand up and make dinner made me want to cry.

After resting on the couch for a bit I decided to suck it up and get going on food. I extracted myself self from the couch and went to the fridge and pull out ingredients – my hubby says the best 5 little words, “I already picked up dinner”.

Thank God! I was so happy and relived, I actually cried.

I had my dinner, had no dishes and took a nap… A 3-1/2 hour nap. Now I am wide awake and hurting. That long nap may have been a poor decision but there is no choice involved when dealing with endometriosis, you have to do what you body dictates. Looks like I will be up with the moon.

20110825-122545.jpg