The sad news is she told me she has difficult periods.  I do hope she doesn’t have endometriosis!

Who have you informed lately?

Foxy

Also, my not-as-severe symptoms have been affecting me outside the time when I get my period.  If I felt like this even more regularly (i.e. when I’m not getting my period) I would be unable to work.  I would be unable to function.  I would be physically incapable of fighting for treatments that clearly aren’t up to the job.  All I do when I’m in pain is curl up in bed and rock and rock.  I’m in too much pain to cry.  I’m in too much pain to think.  When I have endometriosis pain I feel like I’m going to die.  Let me be crystal clear – the pain I was in when I was hit by a car (no broken bones) wasn’t nearly as bad as the pain I’m in during my period.  The nightmares I had following the accident weren’t nearly as bad as the dread I feel with my endometriosis!

At the moment the “best” treatment for endometriosis is running my birth control pill packs together so I have fewer periods (in the hope that it gives me less pain) and to have reasonably regular surgeries to clear the stuff out.  I am currently on a waiting list for my fourth laparoscopy and, if Christmas was anything to go by, it cannot come soon enough!  The other treatment that the doctors have recommended to me is a hysterectomy.  I’ve rejected this because, from all the things I’ve heard, it’s not a cure and certainly isn’t always effective – the endometriosis simply settles somewhere else and eats away at that – the bowel, the bladder, etc.

There is, however, a treatment that I’m keeping my eye on.  Currently endometriosis is thought of as a gynaecology problem.  There are doctors who have started to treat the disease as a pelvic disease.  This means that they don’t take the usual 30 – 45 minutes to clean out the endometriosis that they can see.  They scrape the skin of all the organs in the pelvis in order to remove every last trace of the disease.   This can take as long as 8 hours and, needless to say, doesn’t have a long track record.  I’m hoping that by the time my pain is as severe as it is now (in 2 – 3 years) the “pelvis approach” will be more prominent and I’ll try that.  In the meantime I’m coping reasonably well with the pain management I have in place now.  Well, I say I’ll try it – if it ends up being a waste of time (like everything else the idiot doctors have come up with) I’ll still have to struggle my way through with ineffective pain management and frequent surgeries.  I’m afraid if an effective treatment isn’t discovered soon I’ll have to look into something drastic that doesn’t guarantee results – like a hysterectomy.

Foxy

Just because I have a happy marriage now and I’m able to hold down a job at the moment doesn’t mean that there haven’t been times when I’ve been treated badly.

I finally achieved a diagnosis (I want to say it was 2005 but may have been 2004) of Polycystic Ovary Syndrome, Insulin Resistance and Endometriosis.  Sadly, this had a number of ramifications: I was a vegetarian and had to completely change my diet.  When I told my ex-husband that I needed to start to eat meat he said “Do you have to?” as if I had a choice!

I was in a spiral of pain and depression – when I was struggling physically my ex would imply I was lazy.  His parents didn’t respect me.  When I would struggle at work I would make mistakes which lead to complaints which lead to more mistakes…  After years of being told you aren’t worth much, you start to believe it.

I had to change the way I thought about myself.  So on the one hand I was delighted to know that my pain wasn’t in my head but on the other I needed to think about my body in a completely different way: I have limitations.  This fact didn’t sink in for a number of months/years and I wound up taking a number of medications in order to get myself into some sort of order – not to mention I wanted to pretend that my illnesses would not affect my “normality”.  I took pregabalin which is a medicine that is mainly used to treat epilepsy. It works by stabilising electrical activity in the brain.  As pregabalin stabilises electrical nerve activity, it is also used to treat pain that occurs a result of damage to or a disturbance in the function of nerves (neuropathic pain).  I took metformin for my insulin problem.  I took Mefenamic Acid (prescription anti-inflammatory), paracetamol and codeine for pain.  I took laxatives for the codeine side-effects.  I was taken off birth control and given HRT patches.  I took St Johns Wort when I was off The Pill but gave it up again when I went back on it.  I took Milk Thistle for my PMS.  Finally I gave in and took prozac for the inevitable depression that I was in thanks to the never-ending pain.  I positively rattled!  I was in the position of taking so many medications that I was getting some terrible side effects and taking medications for the side-effects.

I moved jobs – from the solicitors’ firm where Helios and I met to a pharmaceutical company.  The best thing I ever did was leave law.  I think they were in the process of trying to push me out anyway.  I am a very good secretary and office administrator but, in that poisonous environment I only went from bad to worse.  The pharma company wasn’t great either but it was better than lawyers!  Ultimately I was made redundant form the pharma company just a few weeks after my third laparoscopy – in December 2008.  Happy Christmas to you!  I agreed because they gave me a generous settlement.  I could easily say that my health was a factor in their decision and I’m sure that’s why they were so generous.  I didn’t have the energy to fight it even if I did want to.  I spent 2009 going from one temporary position to another.  Financially I was a mess but things were looking up.  I came off a majority of the pills and, thanks to the most recent surgery, my pain was at an all-time minimum.

My point is that you don’t know what life will give you.  When you are given terrible news, you will probably struggle too but I know you will manage.  Until then you have to take one day at a time.

Foxy

Like the Dextrous Diva and Layla I’ve had a year of ups and downs.

The Ups

In April I turned 40 and had a great birthday.  Helios and I went to visit some old friends who live inFrance.  For a closet Francophile, it was a wonderful time!  I love being able to speak French, think in French.  I’ve always loved the sound of French – the way it rolls off the tongue, hangs in the air as if perfumed and then comes back at you – lavender, sandlewood and vanilla.

Of course I’m grateful for any opportunity to see our friends.  I attended their wedding more than 15 years ago.  We happened to be at their house us when Helios proposed.  They attended nuptials at a castle in 2008 – the men wore kilts and spent the day quoting Monty Python and the Holy Grail.  It was madly appropriate considering they are American and French.  It’s great to see friends who never let you feel like any time has gone by since you’ve seen them!

In August Apollo came to visit us for the first time since Helios and I got married.  I’m delighted to have had the opportunity to get to know him better.  He’s a lovely kid – but I’m not allowed to call him that.  At 20 I think he’d be mortified to know that every time I see him I want to pinch his little cheek!  If it didn’t cost so much I might suggest Helios and I get a slightly larger place so that his kids could come to visit.  Perhaps that’s something we can consider in the future.  For now, it’s just wonderful to be friends with my stepson.

The Downs

Due to my endometriosis pain, I’ve organised to have my fourth laparoscopy but won’t have it until 2012.  The prolonging of agony is never a happy prospect but it’s to be expected.

In December, I was hit by a car.  While my nightmares have almost totally cleared and my bruising has all but disappeared, I am mostly grateful for the fact that my injuries weren’t severe.  I am still perfectly capable of getting to and from the office and carry on with life in general.  It could have been so much worse!

In August, my father died in the US; I was unable to go to the funeral.  I’ve had more sleepless nights from this than from the car accident.  The only bright side was that, even though Dad was a ward of the state, he did leave me a little money – enough to visit my family in the US again in 2012.

So while I’m delighted to see the back of 2011 (and don’t come back!) I’ve good reason to hope that 2012 will be an even better year.

Peace and pain-free days to you.

Foxy

In the midst of my recent period and very painful time, I kept thinking about returning to the sunlight of pain-free days.  I feel plagued by occasional but torrential bouts of pain.  Although I am still in pain today, I am coping by taking my painkillers and dreaming of the days when I may have just enough pain to be in discomfort and unable to complain.

Just as with the rain, I’m never going to stop the pain by complaining.  It would be nice to talk with the sun and tell him he’d been sleeping on the job but all I can do is not let the pain defeat me.

Foxy

Now I’m up again.  I’ve had some lunch (leftovers of course) and another mefenamic acid tablet.  I stagger the anti-inflammatories with the painkillers so that as one falls away, the other takes over with pain relief.  I’m tired and may go back to bed again.  It’s hard to know what to do next.  I’m tired – tired of the crazy lengths I go to to manage and avoid pain, tired of the pain, tired of feeling only remotely human, tired of having my head roll around on my neck as if my neck were made of a length of rope, tired of not being able to enjoy anything without organising my body around it, tired of waiting for surgery.

Foxy

I finally relented and stopped taking my birth control on 23^rd and I am sorry to say that the pain has been unbearable.  I am taking the mefenamic acid and paracetamol for the pain.  I’m taking Tranexamic Acid in order to keep from “flooding” as instructed by my surgeon.  She seemed concerned that I would exhibit that symptom.  I don’t expect she’ll like my bleeding between periods either…  I don’t have a date in the diary for my upcoming surgery just yet but am hoping that it will be sooner rather than later.

In the meantime Helios and I are spending our usual Christmas together.  We don’t visit his family because his parents now live in a flat and don’t have the room to keep us.  So on top of a 4 hour drive, Helios and I would have to stay in a hotel – an expense that we can hardly justify.  We usually organise to see them in the New Year.  If we’re lucky, we’ll get to see Apollo too!

I am delighted to say we’ve had a quiet and relaxing Christmas.  I have had some extra time in bed due to pain but Helios has been very good about giving me everything I need.  I had plenty of help in the kitchen and he’s made a couple of hot water bottles to help with the pain.  I hope Helios understands that even though I haven’t been wearing my Christmas smile today, I am delighted that he and I are spending this time together.

Wishing you peace and pain-free days,

Foxy

I got off the train as normal.  It normally gets me to my village at18:00 or just after.  I walked to a T junction.  It was dark and raining.  I looked both ways.  The car to my right was stopped and indicating to turn right.  There was nothing coming from my left so I scooted across to ensure that I didn’t hold anyone up.  The next thing I know, I was on the bonnet of the car that has been waiting to turn right.  The car was exactly in the middle of the two lanes of the road.  I must have slid onto the road but don’t remember how.  I remember shouting “Why did you do that??”  I was being picked up by a passer-by who, it turned out, lived on that very corner.  The driver waited for me to move and then started to drive to the side.  I shouted “Don’t you dare drive off!!”  But he wasn’t going away, he was just moving out of the way of the traffic that was already building behind him (little wonder because he was right in the middle of the road)!

The woman beside me was shaking and I thanked her for coming to my rescue.  I checked my digits and found that nothing was broken.  I could move my neck.  I was crying but that really was no surprise.  I appeared to be unhurt – just badly shaken.  The man gave me his name and a contact number.  I made sure to write down the number of his licence plate.  I assured him that I had nothing broken.  Initially I just wanted to go home and nearly took him up on his offer to drive me home but I thought better of it – I didn’t know him after all – and took the woman up on her offer to take me in.  Also, he was starting to annoy me – he said that I’d run into his car and not that his car had run into me.  I reminded him that it was a dark, wet night and it could have happened to anyone.  The thing to remember was that appeared to be unhurt.  He eventually went on his way.  I went inside a sweet kitchen.  She apologised that it needed a floor but it seemed a nice place.  I joked that I didn’t think she was a serial killer and she said something about soft furnishings.  I tried to ring my dear husband but couldn’t get through.  Unbeknownst to me, Helios had left his mobile in his coat on the porch and didn’t hear it.  It was precisely because I couldn’t get through to him that I suddenly began to wonder and fret.  I knew I was ok but wanted to be sure he was too.  I decided to brave the elements and walked home.  I got to the hill when I decided to leave a message on Helios’s mobile.  I knew (as long as he was ok) he’d worry and I still appeared to be without major injury.

Later that night I was sore and bruised.  Helios encouraged me to take a long hot bath but I still needed painkillers to get to sleep.  I dreamt that night of being at war.  Throughout the night I struggled with my bruising on my right-hand side.  Rolling over or moving at all would cause me to wake up again.

I got up at the usual time and went to work in the usual way.  I catch the7:38 amfrom the village to town.  I was so uncomfortable that I asked to go to the doctors.  I got a taxi to my local surgery and saw my GP at9:30the next morning.  I cried when I told her what had happened.  She kindly gave me Naprosyn (one tablet twice daily) and told me that I needed to go home because I was clearly still in shock.  I walked over to the local grocery store and picked up a few bits and then got a taxi home.

Consequently I’ve lost and more recently regained my Christmas feeling.  I still have bruising on my right elbow but I’m feeling much better and am delighted that no more serious damage was done.

Take care and have a happy Christmas!

Foxy

I live in the UK and so have not had the pleasure of listening to Holly Hill’s comments. I was diagnosed with endometriosis in 2005. I understand that Holly believes that women with endometriosis do not deserve a happy sex life with a faithful partner because of the pain we endure. I can only think that someone would make such inflammatory remarks because 1) they’re too ignorant to know how upsetting their prejudice can be or 2) they’re using the anger of women with endometriosis as negative marketing for an upcoming book. So, if my hypothesis is correct, she’s either ignorant or manipulative – neither are attractive traits. 

As I say, I’m writing from the UK so I don’t know if she is well-known for having a happy, faithful, satisfying relationship with a wonderful man. However, from what little I do know, I would expect not. One thing is for sure, I could tell her a thing or two about having a happy, faithful, satisfying relationship with a wonderful man who never makes me feel like a liability, who helps out every time I ask, who never pressures me when I’m in pain and who gives me incredible (it’s worth saying again – incredible) intimacy – but I don’t think she’d appreciate it.

Smugly yours
Foxy in the Waiting Room

As always, I finish something and then, upon further pondering, I reconsider my words.  I wanted to add that someone who takes pot shots at others who are weak or suffering are called bullies – also an unattractive quality.

Assuming that her love life is as dismal as I suspect it is, perhaps she needs to cultivate her own garden to become someone who deserves the fantastic things that I have and appreciate.

I’m still smug.

Foxy

Next I saw fully-clothed boys in a bathhouse saying “Come around to mine for a party tonight.”  It was a place that I presumed was in Japan.  The bath house was clean looking but not just white – the walls were a pastel blue-green with beautiful minimalist red flowers grew from lower right to the upper left.

The boys all went back to a flat and I next saw them trying to avoid other boys in the same flat who were trying to get lucky.  They crowded in the kitchen and tried to make enough noise to drown out the joy happening in other rooms.  “Do you want some potato salad with that sandwich?” and “I have cold sweetcorn.”  I couldn’t smell it but reached out to touch the cold sweetcorn kernels to confirm – yes they were stone cold and slightly wet.

The next thing I knew, the opening credits were rolling again.  I remembered something that I’m not sure actually happened when I first saw the film: I thought “Well, that was a long teaser – I hope we get to see all of it this time” and the bathhouse appeared again.

I woke up.

I have looked and, according to Wikipedia, Philip Pullman hasn’t written a book entitled “The Box”

Foxy