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!

Just Have To…

I need to write, daily, I just have to. I write to get it out – it helps me feel better and get rid of things that are bothering me. Going through endo is lonely and scary – then put unbelievable pain on top of it.

I first I slowed down because I was recovering from the second epidural and I was a bit down because it did not help as much as I hoped.

Then I didn’t want to write because I was embarrassed that I am currently unemployed.

Finally, it was time to write last Friday. I spoke of losing my job and how it made me feel and the possibilities I now see.

I don’t know who, I don’t know why, but a former coworker sent the blog to my former boss. Needless to say it caused issues.

I don’t know who did this BUT I do know that you don’t read this blog because you care about me and my life with endometriosis.

So, to the ass hat who feels the need to tattle:

I am sure that there are other things you could do with your time then read the blog of someone you don’t like… So do those things instead.

And to all those those it passed to because of gossip and hearsay:

Thanks! You nearly tripled my average page views – now, get back to work!

Don’t Be Such a Pain in the Butt

Or needle in the spine – whatever – either way it hurts!  So the second caudal epidural was two weeks ago today.  I did get some pain relief from this one – just not as much as the first injection.  Also, it seems that the injection site right above my tail bone hurt for a much longer time.  Maybe it was because the two injections were so close to one another…. who knows – I only play a doctor on tv.

I went to see my neurologist who was a bit disappointed that I did not get more pain relief – as was I – especially for the $200 co-pay.  He took the time, sat and listened to how my pain effects my life and the triggers that bring it on.  When I told he about my current employment status he seemed to think this may help narrow down some of symptoms.  Maybe even get more relief since I am not stressed out and able to lay down when needed.  We shall see about that….

I got one of the meds doubled to see if that helps more and I am on my own for three months!  He made sure to tell me I can always call – but we are both hopeful things are going to be better – FINALLY!  It still hurts but it isn’t as bad – and I will take what I can get!  Endometrisos is still a monkey on my back – but at least he is not as big and and a bit cuter now!

Perfect!

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.

The ‘This Is It’ ride

I found the perfect used bike this weekend, actually, my husband found it. I was able to pick it up during lunch yesterday and I was so excited! Every so often, I would stroll over to look out the window to see it all shiny in the sunshine hooked to the back of my car (don’t tell my boss).

I was going for a bike ride! I kept thinking how THIS IS IT! This is me starting to take my body back. This is me getting in shape and shedding some of my 30 lbs I “found” this year. This is me getting to spend time with my husband doing something he enjoys doing. This is me taking my life back from endometriosis!

As the day went on my discomfort turned for the worse. The longer I worked, the more my pain increased. It became clear that my “this is it” bike ride was not going to happen. It’s ok – I have to listen to my body and all that. I was disappointed but all the pain distracted me from it.

I am happy to say that I got my “this is it” bike ride this evening. I went for a 3/4 mile bike ride with my husband. We went just down the hill to a large grave yard by our house. We figured this would allow me to get used to this bike’s gears, adjust the seat, things along that line.

It immediately become clear why this ride was off public roads. The “this is it” ride quickly turned into: this girl has no balance, this girl has issues steering, this girl can not talk and stay on the trail and this girl gets distracted easily and turns towards where she is looking. Lastly, this girl still has endometriosis and can only do what my body will allow.

My bike ride did not turn out how I wanted, but it did happened. And it will happen again tomorrow and every other day I can climb onto that bike and peddle!

I may have to live with endo but I will take my life back.

Must. Be. Hopeful.

Caudal Epidural +4

Struggling with remaining hopeful. Today was the first day back to work. By the time I left the office after about 10 hours at the desk I was hurting, a lot. I came home and got horizontal for a bit and it really helped the pain ease to a point to tolerable.

While I have not been pain free this weekend, I have been much more comfortable without having to concentrate on ‘not hurting’. It’s disheartening really…

But I will not dwell on that or the pain (damn it). Tomorrow is a new day. Look to the bright side blah, blah, blah.

I will rest tonight and feel better in the morning. I have to – I have no choice left. AND it can take up to 2 weeks for the steroids to work. They will work. They have to work (damn it).

I still have a little can can left in me…

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!

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?

(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?