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2 Guns, Wicker Man & Small Victories

My first trip away from my home in almost 2 years started out wonderfully! The roads were clear, the weather was nice and I remembered how to sing at the top of my lungs to the Smiths. Surprisingly, I even remembered all the words. As you probably understand, traveling on highways for long periods of time my ones self can tend to get a bit boring. So, I tried to make up games to play while singing at the top of my lungs for entertainment.

My first game was “Find the Weirdest Thing”. I started really looking around and decided that I-10 is a bit barren and probably had to do more than one game at a time. SO – I started also looking for “The Cutest Thing I See”. It was cute that I found first. While passing a truck towing a wooden and metal pen I saw a mother goat nursing her little kids. They were a furry and cuddly and seemed to be enjoying the trip. Shortly after I found the winner of the other game…

I came upon a big RV that looked like it had a bunch of Blair Witch bundles attached to the back. It was still fairly far away so it could be that it was something less creepy. The closer I got, the more my first impression seemed to be right. There seemed to be several grotesque trees that had been pulled out of the ground with roots dangling. Tied to the top of these trees were bundles of dry sticks. What made it even creepier was that while I passed the front of this RV I caught a glimpse of the driver. He was a withered looking man with a hat on his head and twiggy fingers gripping the steering wheel. All I could imagine for miles was… The Wicker Man!

It was at this point I decided that The Smiths had to go and be replaced with something a bit more peppy.

With the Stray Cats blazing I continued on. It wasn’t until 2 hours into my journey that the pain became more demanding of my thoughts. I tried my best to fanagle the car seat to get more comfortable. I was not going to give up fighting. In the end, I went with a low-lean rider approach. Tilted back and arms extending to the steering wheel I continued on south. By the time I got to my parent’s house I never wanted to sit again. The pain was certainly ramped up and nearly sprang from my car when I got there.

After the initial hugs and greetings I realized that the pain was so much that I was starting to shoot down my leg and make my foot numb. I decided to eat, take another tramadol and lay down. After a 2 hour nap I was able to socialile and eat dinner with my parents. I even made it to their friend’s house to celebrate a birthday!

It may not seem like it to others – but this was such a victory for me! I kept to my guns and I was able to over come the fear of the pain and take a road trip! It really hurt, like I feared it would – but I was able to motor on!

Endometrosis may plaque me with pain but I was able to tell it how I feel by taking this trip.

Endo – you can SUCK IT!


Pieces of Me

Today marks the one year anniversary of my hysterectomy.  I am not sure how I feel about it really.  It was just a day that I lost pieces of me.  They may have been organs that were becoming dead tissue but they were still part of me.  I am lucky that my “girlie bit” organs were the only organs I lost that day.  The endometriosis had started to more to my kidneys and was all the way down covering my entire pelvic floor.

Besides the organs and other tissues they have removed from me in the last 1-1/2 years, I have realized that I have lost other pieces of me along the way.

I have lost the ability to really concentrate on knitting and have only completed a handful or projects.

I have lost my desire to get lost in a book, mainly because I am so tired by the time I pick one up that I fall asleep.

I have lost the ability to visit my parents, only 3 hours away, because I can not sit in a car that long.

I have lost the time going and doing and seeing with my husband because the pain was too intense.

I have most certainly lost friends because I can not go and “hang out” like I used to and they stopped calling to see how I was.

And sadly, I have lost real pieces of me – my personality – myself.

I am finally beginning to realize that I may not ever be without pain.  It is hard to understand, accept and move on with life but that is what I am doing.

I have been through two (not so fun & expensive) caudal epidurals.  They seem to help knock the pain down.  I will take what I can get.

I just finished a knitting project – the first in months!  I have also signed up for a knitting class that starts this weekend.  I am really excited and looking forward to it.

I got a bike that I have gone on short bike rides with my husband. It is nice to be outside pedalling around like kids in the graveyard near our house.

I have not yet been to see my parents – but I am hoping to for the holidays *fingers crossed*

I have found the friends that are truly caring.  They have been the ones that have checked and visited and called – and that is worth so much to me.

I am beginning to learn more about the person I am becoming from all of this.  I have certainly been changed by all of this.

I may have lost so many pieces of me but I thinking I am starting to take some of the pieces back – and put together  and beginning to see my puzzle of me.

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!


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).

Late Night Loopy

Tonight, I am beat, just totally spent from a super long day that started at the doctor’s office. Pain is very bad tonight and just waiting for something, anything to lessen it.

Here is something fun and positive to put in my brain to try to sleep to. I hope you sleep better than I will.


Is it Hot in Here?

So, from my earliest recollection of hearing the word menopause it seemed to always be associated with “hot flash”.  Well, I now know that menopause is one HELL of a lot more then that, but we will cover that at another time.  Back the hot flashes.

So I knew that having a complete hysterectomy would be result in surgical menopause – so I immediately started preparing for the resulting hot flash catastrophe that would ensue immediately after my girlie bits were removed.  I can not be positive since I was fairly mediated at the beginning, but I believe that I did not have my first hot flash until about 5 weeks into my recovery – and it was SO not what I was expecting.

It was shortly after my Four Little Words (when are you due) incident and I was out shopping at the Mall.  It had been a great morning.  I was out and feeling pretty good though still obviously healing.  I had a coffee and a long over due visit to one my favorite stores (Yankee Candle – one of my little addictions).  I shouldn’t push it – it was time to get out of the mall and back to being horizontal.

I had planned my parking to be the closet to the stores I wanted to visit and my escape route was directly through a large department store.  I had just entered the store and realized they were getting their Christmas merchandise out (keep in mind this is early October).  Let me warn you now, I really LOVE Christmas – it just instills visions of baked goods, joy and happiness into my little Grinch heart.  So, I obviously need to find the strength to wander through what they have out for 5 minutes.

I quickly found this sweet little goat stuffed animal that sings “The Lonely Goatherd”… and it was 25% off.  I had to have him.  This stuffed animal was making me smile and laugh – two things I had not done in a very long time.  I made my selection of the absolute best little goat and made my was through the holiday glitter to the check out stand.  As the kind, older lady was ringing up my new little fella, I had the weirdest, most uncomfortable sensation start to swept through me.  All of the sudden, I was freezing cold and had goose bumps all over – but – at the same time there was a smoldering inferno inside my chest and brain that burned so completely it make me cold.

I didn’t know what to do!

My internal monologue = Am I having heart attack or a stroke?  Did I get some kind of Merca like infection I picked up at the hospital that is raging through my body?  Did all my organs just suddenly flip out and change places?

As you can imagine, this entire internal monologue was running across my face.  I realized that the kind, older lady was asking if I was ok – and I hadn’t answered.  Finally I found some words and got out that I had just had a hysterectomy the month before and I thought something was wrong because I was freezing cold (I showed her my goose bumps) but I had this fire in my chest.  By this point, she has walked around the stand and was slowly steering me to a little bench to sit down.   Once she had me settled, she knelt in front of mewithher hand on my knee and said “You are just going through the change – and that is a hot flash”.  Of course I knew she was wrong – I was supposed to be just really, really hot and sweating, right?  Right?  I voiced as much and she just calmly said:

“Your hormones don’t know what to do and now you just can’t regulate our temperature.  Sometimes you are hot – sometimes you are cold.  You had the cold one just now.”

Me internally = HOLY SHIT THIS SUCKS! Me out loud to the kind older lady = “Thank you, that wasn’t in any of my research”

She smiled and shook her head witha half laugh.  She was on her way back to the cash register.  I silently followed her and we finished up my silly goat purchase.  Instead of the “Thank you and come back” – she said “It gets better honey”.

This was the beginning of realizing that there are a lot of things They don’t tell you.

(un)Amusement Park

Over the course of the last 11 months since my hysterectomy I have noticed changes almost daily – in my body and in my psyche.  Every morning I wake up and take a deep breathe wondering what the day will bring.  It is almost like waiting to see what the new features are going to be at the amusement park’s side show.  Most noticeable to those around me are my extra 30 lbs (they all swear looks good on me) and my new found ability to cry at the drop of a hat.

It is hard to admit but I have always worn my heart on my sleeve.  But since my hysterectomy it feels like I am wearing a “Susan’s on the edge” dress for all to see.  This was never more evident to me then when I took an aptitude test before an interview for a new position at my office.  I went through all the “pick a word” – this is that – map this graph –  to figure out “what I was”.  I really wasn’t thinking much about it as I went through it all as I had taken this test a few years ago and I was a something like “perfectionist with a side of analytical thinker”.  As I continued to decipher the hidden meaning from the words I had chosen, it started to become clear things had changed.  At one point I had to reveal a word that described me next to a number that correlated with some of the findings.  This word was “emotional” – so –  I immediately got upset and said out loud “No I Am NOT”.  Of course this is the just one of several words, but obviously, things had changed.

This is just one of the many changes that have made me different.  The shear experience makes me look at life differently.  The things that upset people around me just seem so trivial.  They just don’t seem to get it – there is so much for them to be thankful for and they seem to ignore it.  I had always taken my health for granted.  I had kidney stones and broken bones – I figured that would be the worst of it.  I currently long for those days.  I have had things done to my body in a doctor’s office that I would have thought would have to be done in an operating room.  My body has become someone else’s at this point.

Menopause – I have said enough.

Every day seems to bring something new for me to notice; my hair is breaking, my skin has dry patches, I forget words when I am speaking, I have WAY more grey then I did a year ago and I have a HUGE wrinkle between my eyebrows.  The one think that never changes – the pain, the pain is always there.  I am thankful that the endometriosis is no longer strangling my large intestines and was pulled for me kidneys.  I was just hoping for relief, just some.  Maybe my personal side show would be easier to take then.

It doesn’t matter the day – I wake up and just lay and bed and wait – what new thing would come to light at my (un)amusement park today?

Bending = No No

Today has been one of the worst pain days that I can remember in the last few months. At least I believe that I have a specific correlation between bending over and having extreme pain follow.

It is hard to know “when to say when” if you are doing what are considered normal tasks. I am talking about just wiping up the kitchen floor after spilling something, well, twice. I don’t have any extreme pain while doing these chores – but about 6-8 hours later = holy shit!!! (pardon my French)

Today I sat at my desk with tears in my eyes due to it hurting so badly. And the guilt that comes with knowing I can’t do any more. I had obviously gone way past “when to say when” hours before. But now I know:

Bending = no no. And I am calling the doctor tomorrow.


Know when to Say “when”

Worst. Pizza. Cutting. Ever