Tag Archives: neuropathy

My Get Up and Go

Unable to motivate myself today. It is a cold rainy day in Florida. I have 4 little cuddlers in bed with me & a 6.75 on the pain scale. Must remember not to scrub bathroom floor on hands & knees. I have found that weather changes also increase the endometriosis and neuropathy pain.

I was going to go to the gym for the first time today, but I don’t want to make it worse. I also don’t want to risk making the gym a big negative in my head because I decide to go and make myself hurt more.

I know I have been neglecting my sporkfight as of late. Sadly since the loss of job & work laptop I have had a tough time sitting at the PC. Hopefully I will be able to rectify the situation after my tax refund. *fingers crossed*

20120226-095023.jpg

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!

20120204-112554.jpg

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.  

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

7-1/2 Minutes + a Verbal Shake Down.

So – the call I dreaded so much…. I made it.  They picked up the phone and literally put me on hold for 7-1/2 minutes.  The hold music – so bad!  It was about 30 seconds of a Kenny G knock off that repeated…. for 7-1/2 minutes.  When they FINALLY picked up and I knew I had the right number this is how it went:

Receptionist:  Dr’s BLAH office – you need scheduling?

Me:  Hi this is Susan Lastname, DOB, ect and I am seeing Dr. So and SO.  I do not have a follow-up appoint from my last visit but I would like to make one since I am in considerable pain still and believe that there is a trigger.

Receptionist:  OK – if you need the nurse – you will have to call a different number.

Me: I would like to make an appointment and I can call the nurse if I need to when we are done scheduling.

Receptionist:  Well, the Dr is out of the office for the rest of the week – but you can come in to see one of the nurses practitioners.

Me: I do not believe that I will need to do that – its for endometriosis and neuropathy so I am already used to the pain – we just trying to diminish it.  I would just like to make an appt with the doctor please.

Receptionist: Is the doctor treating you for endometriosis here???

Me:  Yes – and the neuropathy it caused.

Receptionist: (snarky) Oh.   (scheduling annoyance and checking times back and forth)  We have you schedule for next Friday at 8:45.

Me: OK – Great – thank you for you help

Receptionist:  Sure (click)

I feel like I have been verbally shaken down and mugged for information.  Too bad she did not give her name or I might have to pass it to the doctor next week.  If you hate your job THAT much – find a new one.  Jeez – I am calling into a specialist’s office – you know that I have something bad going on.

MANNERS and COMMON COURTESY will get you far in this life – I wish more people understood that.

Take 2 and Call Me in the Morning

There are just some phone calls you do not want to make – even if they will lead to good things for you… I have to make one of the calls tomorrow  morning – first thing.  Well, honestly, I should have made it call this morning.  I. Just.  Didn’t.  Want. To.   Seriously – it was not going to happen once the work day started this morning.  I know I would not have the patience to get through the call(s).

Yesterday, I was in so much pain I was sitting at my desk holding back tears and trying to ignore my fuzzy vision.  I knew I just had to get home to my meds and my heating pad and then I would find some relief.  Unfortunately, the pain took quite awhile to abate.  There was a point in time I thought I would have to call for a ride to the ER for something through an IV.  Thankfully, the pain was knocked down a few notches and I could think.  I knew what did this!  I knew what caused the pain to go off the deep in….

Bending – bending is bad bad bad.  I now really know this is a huge trigger for the pain to go through the roof.  Great!  this important information for my neurologist to know.  This will help with adjustment of my meds and maybe something new to try!  This was great!  I just had to give the doctor’s office a call.  CRAP – the doctor’s office – I HATE calling the doctor’s office – any doctor’s office after the last year I have been through.

I like nurses – I really do – they have helped me out of some really tight pain jams and I love them.  I love what they have gone to school for – and what they do day in and day out.  It is something I could never do.  But it seems like all the nurses at my doctor’s offices are starting their very first day on the job with my phone call.  It usually goes like this:

  1. (Initial call) “Hi!  This is Susan I am still experiencing quite extensive pain, but I think I have found a trigger.  Oh – I can’t get in to see Dr TooBusy until the day after the Second Coming?  OK – I will take that appointment  and leave a message for the nurse… ” patiently wait and sometimes get disconnected and have to call back and then BEEP!  “Hi- this is Susan, date a birth blah, issue I am calling for, awesome revelation that I am calling to let you know about to see if it helps with my treatment.  What can I do in the mean time since I am still experiencing quite pain?  My # is blah.  Thank you!”
  2. (Return call)  Hi Susan – this is Nurse not sure what I am doing returning your call.  What were you calling about?  (ME = I repeat exactly what the message stated).   NUSRE= Oh, well let me pull your file and give you a call back.  (Keep in mind I have had 3 surgeries, several procedures and countless tests done over and over.  I am sure my file needs its own room at this point).
  3. (2nd Return Call) Hi Susan – this is Nurse not sure what I am doing again.  I pulled your file and see that you have endometriosis and neuropathy.  Are you still taking the Lyrica and Tramadol?  Ok, well, you still have pain?  (Me= repeated what I said in first conversation that was repeated from the voice mail I left).  NURSE = Oh, you are still in pain?  Ok, let  me talk to the doctor and call you back.
  4. (3rd Return Call – If I am lucky, the same day)  Hi Susan – this is Nurse not sure what I am doing returning your voice mail.  (ME = I explain we have already spoken twice and repeat for the 4th time that day what I am calling about).  NURSE = Oh, that’s right!  The doctor has already left for today.  (It’s 3pm).  I will have to call you in the morning – but in the meantime continue with your meds as normal.
  5. (4th Return Call – Close to afternoon the next day)  Hi Susan – this is Nurse not sure what I am doing again – I spoke with the Dr and wants you to come in to see you and maybe more nerve tests.  (ME= I explain when my appointment is).  NURSE = Oh that is a long time from now, let me talk to the doct…. (phone being snatched)
  6. Susan – this is Doctor blah blah – can you come in tomorrow?  Ok – see you then.
Can you see why I don’t want to make this call?  I think they should give you Valium to gear up for when you have to call them.. It is like jumping through hoops of fire when you feel like shit to get some help.  So, I can’t wait to call tomorrow morning!  Thank God tomorrow is Three for Thursday!
Take 2 and call me in the morning!

Three for Thursdays! 8.4.2011

You know when you are feel badly, there is precious little that will bring you comfort.  This week’s “Three for Thursday”  is about the things that bring me comfort when I am feeling my most worst.

Let me just say that, typically, I am feel my worst in regards to what the endometriosis or the (supposed) neuropathy are doing to me.  I guess I could also throw in the laundry list of drugs and assorted medications they put me on and what they do to me.  Well, for that matter – I guess to cover all bases – it would be what the continual pain, lack of sleep, drug trials, doctor run arounds, emotional drain do to me.  Yesterday was a combination of everything when I thought up this week’s list.  And yes – my husband is really ALWAYS #1 on every list – but I thought I would change it up a bit this week.

Here we go!

#1 – My puppy Pixie.  She seems to know when I am feeling my worst and always just wants to cuddle and make be feel better.  She will just lay there and let me pet her to get my mind off the pain.  By this point I am surprised she has all her fur on both sides – hopefully we won’t be calling her “Baldy” any time soon.

#2 – My heating pad.  Any girl with endo will tell you a heating pad is one of the most important items you need to go into battle – other then your spork!  I am currently padding with the XL Sun Bean with the “Superr Sofft” plush washable cover.  Its pretty fancy, just like me.

#3 – My bed -or- as I typically refer to it – Bed.  Sometimes nothing feels better then just laying down.  I know that the pain in my pelvic region is aggravated by 2 things – sitting in a chair for long periods and standing.  Lucky for me my desk job does not require either.  Caught me – that’s a big fat lie.  So you can see why I like Bed so much.

Below is a picture of this week’s Three for Thursday.  What are things that make you happy when you hurt?

I’ve Been Downgraded

I have been upgraded to 300mg/day Lyrica to help with the pain…

Lab work came back that I have low vitamin D3 and I now have a fancy supplement to help with bone strength and hopefully the pain…

I have done entirely too much physically that has caused too much pain…

And now feel as if I have had a spork downgrade… to plastic.

I can still fight endometriosis with my plastic spork – I will still fight.

20110803-081107.jpg

Waging Weight War

Seriously, how many battles can a girl fight – at once -with a spork? Apparently it is at least four:

  1. Dealing with Endometriosis
  2. Dealing with neuropathy & pain from the above
  3. Recovering from a serious hysterectomy from the above
  4. Weight gain from all of the above!

I have been diligently dealing as best I can with numbers 1-3 but I am having some serious issues dealing with #4. I have been blessed all my life in being relatively slim and fit. I can say that this is the absolute heaviest I have ever weighed in my entire life. I have heard all the arguments from people:

“you don’t look heavy”

“you were too skinny”

“your body has been through a lot”

“you are within your ‘normal’ weight limit”

And I can understand were each of these comments comes from. Trust me – I realize a year ago I was in a real fight, not even knowing it. I also realize that my body is dealing with the introduction of hormones + other drugs to assist with the pain, the hysterectomy damage itself as well as repercussions from quitting smoking – for good. But all of that is of little comfort when I try to put a dress on from two years ago and I rip the zipper try to get it over my hips.

Its just that in my 40 years, I have become very accustomed to being in control of my body, the master of my own ship so to speak. It was always in a healthy fashion I took control; first it was gymnastics, then cross country running for years and years and most recently, belly dancing. I have always been in shape and have had excellent muscle tone. I have also always known my body and what it can and can not do. Now I am 30 pounds heavier and faced with “bulbous belly”. If I stand and look at myself naked I have no recognition to the body I see before me. Due to the pain of endometriosis and the resulting neuropathy I find it impossible to turn to my exercises of old – walking and crunches/calisthenics. It is also difficult to look for new exercising options when I am so wiped out by the time the work day is done. Seriously, I can barely Google let alone drag my ass to exercise somewhere!

So now I am left with walking around lakes and museums once a week with my wonderful hubby + as many crunches as I can do until my eyes water. Again, how many battles can a girl face at once? Anyone have suggestions for me? I am all eyes!

my nemesis

Nothing Happy Can Follow the Word Infestation ….

Have you ever noticed that there are some words that are up to no good?  You just know when you are reading and run into one of these words that things are about to go downhill, fast.  Everyone has their own mental list of these words and today I will share one of mine with you:

Infestation

Infestation has long been associatedwithinsects in my brain.  Maybe it is because they kind of rhyme together.  Maybe it is because they both begin “in”.   Who knows – the simple fact of the matter is that infestations have never been linked to happy, fluffy, sun shiny things.

Have you ever heard of a cupcake infestations?  (I could only hope!)

How about a money infestation?  (THAT would be nice!)

Ever had an infestation of good health?  (I think not!)

This all leads me back to think about endometriosis.  Once you have a basic understanding of what it is – you know that it is just tissue – multiplying in the wrong areas – eating up available real estate in a body cavity.  THEN, if you suffer from it, and really think about it, you think INFESTATION. 

Endometriosis tissue is not supposed to be anywhere but inside your uterus – and for sure not anywhere that it causes pain, scar tissue and legions.  It is infesting other parts of your body and even though extreme measures are taken to remove all of this tissue – if there is just one little speck left over – it can again infest your body.

You would thinkwithall the pest control ads and sprays that someone would come upwitha way to control this infestation… or at least give those who suffer from in a money infestation too!