Tag Archives: endometriosis

Bad, Bad Blogger (part 1)

It has been a very busy, very crazy 2012. As a result of this circus, I have neglected my writing.

We lost my father in law just after my last post. It was sudden, scary and painful all around. I was unable to travel the 12+ hours due to my endo and neuropathy. Because the the situation didn’t suck bad enough, I had to send my husband on that trip by himself. Needless to say I have never been so angry at myself and my disease as I was that long week that I was alone. I spent my time grieving for much more than the loss of a beloved father in law. Time marched on and so did my pain.

I was scheduled to have a nerve stimulator put in July this past summer. Unfortunately, my husband’s job was eliminated and in turn, so was our health insurance. I was crushed. Not only for the loss of opportunity to live a better life but also the pain my husband endured with the loss of his job. He was given warning, no chance to change to another position. Once again shown how uncaring and dismissive the company I once worked for was. Put simply & crudely – they can suck my ass.

After fear, concern and several distant job interviews, my husband was offered 2 jobs in the Raleigh/Durham area. So Durham is where we landed.

Stay tuned for the next installment of the sporkfight circus….

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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!

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Be Careful What You Wish For…

So yes, it has been a bit since I have added something new and sporkfight has become a wee bit neglected…

I have be so busy with my new job!  Honestly, I went in hoping for just a part time job… something to make a bit of money to help with bills so I would not feel guilty about working,  I really, really wanted to work at one of my favorite stores.

I went into the interview with fingers crossed and hoping I could get one of the part time seasonal postions and knock their socks off to keep it into the new year.  Here it comes –

Be careful what you wish for.  Not only did I get a part time job, but becasue of all my “experience” I also am now a “Part Time Asst. Manager”.  Ok, not too bad, right?  Still part time – give my body time to rest.  Still have time to clean and make dinner and see my husband.  In theory – this job is great.  In theory.

Just one little thing – Holiday Season.  The two little words that strike fear into the hearts of mall workers everywhere!  And now my part tine job has been scheduled for 38 hours this week.  On my feet, bending, leaning, kneeling, lifting.  WOW!  I am tired.  So far I am making it – but there a little warning signs:

  1. Pain in the morning
  2. Pain when stepping on my left foot
  3. The electrical shock on my inner thigh (neuropathy)
  4. And of course, the internal stabbing (endo)
I am making it – barely.  I have already mentioned it to my boss – but hopefully once we have the store all set for the holidays my hours can be cut back a bit.  I would hate to lose something I am so excited to have.                                                                                                                                                                       So now I am crossing my fingers to get less hours – we shall see.  Happy to have a job.  Happy to be doing it well.  Hoping to keep my body from attacking me.                                                                                                                                 Be careful what you wish for.  

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!

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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!

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.

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Three for Thursdays! 09.08.11

It’s Three for Thursday time! I missed last Thursday because I was so nervous about by epidural! So I thought I would highlight the happy since that procedure.

#1 – I spent the day after the procedure knitting – SITTING and knitting – for hours! Not only was I sitting upright without massive, constant pain but I could actually concentrate on knitting, it was wonderful! I am actually optimistic enough to sign up for a knitting class at the end of the month.

#2 – Out of 3 work days, I have had 2 very good, low pain days at the office. The is just amazing to me! I am hoping for this to be a continual trend.

#3 – Since the epidural, I have not once had watery eyes due to pain. Instead, I have had several occasions of leaky eyes due to realizing that I am NOT in agonizing pain.

I am happy, thankful and most importantly – hopeful. So happy to have some hope for a change… I am just about ready to kick up my heals, just about…

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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…

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Burning Up!

Call the fire department because I am scorching the sheets!

In all my rush to get ready for my epidural in four days, I forgot to get one of my prescriptions – an important one. The one that keeps the “mean, hot times “anyway”.

At one point I was so hot and sweaty, I took my temperature – I just knew I was going to blow the end of the thermometer. It was 97.2.

It can’t last forever, right?

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