Tuesday, March 22, 2011

The one with "Dr Google"

Do you use Dr Google.

I do.

I honestly can't help myself. I punch in symptoms and find myself trawling varying websites for cures, fixes, help. I just can't leave it well alone.

I've managed to get myself into a state with all this Dr Googling and have now self-diagnosed myself with anxiety. I probably don't have it (& yes I know I probably SHOULD go to the real Dr google) but I do have some eerily similar symptoms

For now I am going to put it down to daily work stresses. Today I have felt a tightening across my chest (almost like a pulled muscle) it's more pesky rather than anything to be worried about and I'm sure that it's got to be some form of anxiety as it only occurs when I'm really stressing. Work has me on edge and I am counting down those remaining days, which actually makes me sad because truly I love the workplace, I love the girls. I just can't deal with the added stress of my vast experience at the job combined with juggling home life, mum life, wife life, travel and my personal issues over this journey.

It sure beats the alternative... thinking it could be heartburn (a more common IPS *) 

* Imaginary Pregnancy Symptom    

The one with "I have learnt"

I have learnt… that no one journey is the same & it's possible to feel alone and different.  

I have learnt…  that it doesn't help knowing someone went through a similar operation (what?? she had stage 2 endo removal… well goodie for HER!) 

I have learnt…  that contrary to popular belief just because you fell pregnant once - your body will automatically know how the 2nd time around (ha!) 

I have learnt… that a lot of those who struggled falling pregnant with number one are now expecting number two

I have learnt… well meaning comments hurt 

I have learnt… that pregnancy does indeed CURE endometriosis. 

I have learnt… that endometriosis is never really cured, it can and DOES grow back within 5 years 

I have learnt… that society apparently dictates that couples WILL procreate and have MORE than ONE child 

I wrote these to a friend earlier tonight & thought they were good enough to share here. I've had a relatively good couple of weeks. The blasted bleeding I had (see last entry) lasted EIGHT days! It stopped and then started up again for another day. I was most annoyed. To make matters worse... AF is late. Well not LATE, late. I am technically due today (day 28, later than normal for me as I'm a day 24 average) but it hasn't started. I'm sure she will be here in the next day or two as it's completely out of whack, I am just confused because that mid-cycle bleeding actually went on for so many days (longer than my normal AF) so I'm not sure what is NORMAL anymore. 
Of course being 'late' means there is a small, teeny tiny glimmer of hope building and the way I've been feeling today and yesterday (work stresses) means I am gearing for a god-almight CRASH. That scares me. 
All this hope is silly. Crazy in fact. We haven't done anything to actually get pregnant this month (if you get my drift, we made a conscious decision to avoid pregnancy as I'm not confident with this lump staying indefinitely) so feeling this hope is completely and utterly ridiculous... am I the only one that does this? 

Of course there are NO pregnancy tests in the house...

Monday, March 14, 2011

The one with "Too much information"

**TMI Alert*** 
I did warn you this blog wouldn't be all pretty, having endometriosis also means that it can be quite gory, so feel free to bypass this post  as it is moreso for me and also to share common symptoms of this disease. 

As I mentioned in my last post, I started bleeding mid-cycle last Tuesday. My other half was really worried but I put it down to stress on my body from the previous operation in January as well as stress on my mind from everything that has been happening. After three days, I was fed up and as it wasn't remotely 'normal' for me (although none of this can be deemed normal, so god knows why I would use that word) I ended up phoning the new GYNO and spoke with his secretary who thought it was probably best to speak to him seeing as how I was mid-cycle and this was not my usual cycle.
After waiting most of the day I finally got a phone call back from the specialist saying exactly as I had suspected. A very common symptom from endometriosis :( 

It would seem that I am now getting most of the other symptoms of severe endometriosis… and I really don't like it. 

The bleeding lasted well into the weekend and finally eased off to a moderate spotting yesterday (Sunday)

Today I realised that it is day 23 and after a burst of PMT (aka snappy anger) it appears that this cycle is coming to an end. Then the bleeding started up again while I was at work. This time accompanied by some tender pain. At first I thought it was AF, but it is now later in the day and I'm not 100% convinced it is my actual period. Time will tell I guess. 

Wednesday, March 9, 2011

Vices & stuff...

A beer or two is all I need to be able to talk freely (well write freely) without inhibitions or fear of what I might say that may not be politically incorrect… 

I also have  a new computer (well laptop… actually it's a MacBook Pro - jealous much??? It is a damn sight easier typing on this than the iPad - which suits is purpose as being my 'reader' of blogs, not writer of blogs!) So watch out, I have a keyboard and I'm not afraid to use it!!! 

Remember my last entry… I tried to find my peace? I'm still fucking looking. I set the alarm for 6am and went out the back (quietly so as not to wake the tribe) and sat on a towel. Breathing In. Breathing Out. Closing my mind, but sounds of the highway filtered through. A constant stream of car noises - seriously people… it was 6am (ok well it was actually 6:10am because I could not wake fully with the first alarm call out) and while we do hear some traffic noise from the highway (we are 2 streets back, but are on bigger semi rural properties the noise is just a sssssssshhhhhhhh sound…) but as it turns out a LOT of people must be making their way in at that time of the morning. So after trying to block that noise out, I tried to focus on the bids, but they flew away… I then felt a little chilly and wished I had grabbed something more than just my old satin robe. 

Let's just say it did not go well and meditation it was NOT. 

Hopefully better luck next time ;) 

I've actually had the past 2 days off work (yesterday I actually HAD to work for DH, but today was my usual day off) I am feeling relaxed. While I am not terribly looking forward to going back to work tomorrow, I'm not anywhere near as anxious about it as I was earlier this week (could be the two beers I've had… they have given me a very pleasant buzz) 

The last two days though they haven't had work stresses pressing in on me, they also haven't been without other stresses. I started getting a wee bit of spotting late Monday night. A Dr Google search the next morning yielded to me that spotting (***TMI alert*** ) is a little red upon wiping. That would be all fine and dandy as I've had that before right around ovulation time {which incidentally is where I'm at with my cycle} but it didn't stop with just a little spotting. It started bleeding and 48 hours later… still going. I haven't contacted my new specialist yet as I'm sure I will just get a standard 'it's very normal' answer and I am not sure I'm up for that mentality at the moment.

 Cue Emu *bums in the air, head in the sand* 

My DH is worried and has been asking me for 2 days now whether I will just call Dr W (specialist) I know he's worried, he's been giving me cuddles and that only happens when he stresses about me and this blasted disease. I think if it's still going strong tomorrow then I may give them a call to just see - it can't hurt, can it? 

Really it's just overly frustrating for me because my op was only 6 weeks ago and I have had close to 3.5 weeks of bleeding (post op / 2 AF's and now this mid cycle bleeding) it's all just a little too much and I am OVER IT!!! 

While I say I am just frustrated by it, it has added to my emotional state and after a small episode at the shops with one very tired toddler, a stressed mummy and a pair of shoes… I ended up coming home and taking a time out for myself. Emotionally I am wavering. Some days it feels very much back burner style and it's just there lurking. Other days like yesterday, it is a very real, a very tangible pain and it fucking hurts. I had a mini meltdown (in the shower again, that seems to be a given these days) and afterward felt very edgy knowing that I hadn't got it all out. It's all in there waiting to erupt and I just don't know when it will. That scares me. 

There are so many things that I could be doing for this disease - taking control and working toward living a future with it, but not letting it rule ME (which is what I feel it is doing right this moment) I can do a full diet change, I know there are certain things that probably trigger it (I am fairly sure BEER is not too good for it, but it's my current calming / coping mechanism right now) cutting back on my caffeine intake… the list goes on. But you know what? Right now, I need to feel bad. I am NOT ready to give up the last of my pleasures for this disease. I want to be able to have my guilt pleasures an enjoy my daily coffee(s) without worrying of the consequences. This disease has robbed me of so much - why should I give up the only things that make me happy? Eventually I may re-think it and maybe even find new guilty pleasures but for now. The coffee stays. So does the beer (or two) 

Or three ;) 

Monday, March 7, 2011

Finding my peace

Last Wednesday I found myself with a rare day up my sleeve, working from home, Miss K was in daycare an extra day as I was struggling to meet some major deadlines. Of course with working from home comes the extra benefit of being able to complete some simple tasks such as hanging the washing out. 

As I was hanging the clothes out, I had a rare moment of absolute peace come over me. As the sun shone brightly and warmed my skin, I was at ease for the first time in weeks. A sliver of strength and a glimmer of happiness, glowing inside me - a teeny tiny little fire began to burn from the embers. 

Have you ever experienced a moment such as this? Knowing that everything will be well with the world – eventually? Finding your peace. Breathing deeply. Exhaling slowly.


Unfortunately it didn’t last. That night something set me off and the unease crept back in, the familiar edgy feeling, heart pounding, anxiety increasing. I can’t pinpoint exactly what put me back on the edge and can only assume it was to do with work (I had officially resigned on Tuesday and can only assume my rising anxiety may have been caused by this) Try as I might I couldn’t reinvent that feeing of peace.

Starting tomorrow I have decided I need to spend 10 minutes sitting out on our back patio (prior to my morning shower) 10 minutes to think, to clear my mind, to find my own peace once more.

This is me - clawing back.  

Friday, March 4, 2011

Best friends forever

A girl can always rely on her friends to prop her up when she is down. I am truly blessed to have two such friends, one who dropped everything to have coffee with me at the last minute and the other who baked me my favorite carrot cake and supplied the tissues for my tears.

Girls you mean the world to me xxx

- Posted using BlogPress from my iPhone

Thursday, March 3, 2011

Becoming informed

Endometrial nodules in the Pouch of Douglas, uterosacral ligaments, and rectovaginal septum are generally larger and deeper than ordinary implants. They do not usually respond to drug treatment so they must be removed surgically. Because they are difficult to reach, there is a danger that the bowel may be damaged accidentally during surgery. Therefore, the surgeon must be experienced at laparoscopic surgery. Cutting (excision) techniques are usually used rather than burning (cautery or diathermy) techniques.
The above quote I found on a fellow endometriosis sufferers online diary. As I re-read it was like a like a light-bulb moment, a-ha! I am THIS.

My endometriosis as mentioned previously has always been in the Pouch of Douglas area & it is localised and for that I am eternally grateful. However as it says above
"generally larger and deeper than ordinary implants”.
This sums up why my original surgeon used the excision technique rather than burning (many people IRL questioned why it wasn't just burned away) at the time of my first operation, to be totally honest - I wasn't concerned or focused on my health or the endo. It was THE REASON. The only reason I was NOT falling pregnant and I focused all of my energy on getting myself pregnant. My endo was a poor second to that elusive pregnancy and I just dealt with it. I had the ops, I recovered, I moved forward to the future and concentrate on getting myself pregnant. I was one of the lucky ones.

Once I achieved pregnancy the endo became backseat. Yes I had it. No it didn’t bother me apart from chronic pain each month. I’d lived with it for years - it was to be expected you know?  

So, why now? Why am I struggling so much with the thought of a 2nd op? I think it’s because this time around due to circumstances out of my control, babies are not the priority (though I so desperately want to add one more babe to our little family, just one. I’m not greedy… but that is another story – I will get to it eventually)

This operation scares me more, perhaps because I am older and much wiser than my 28 year old self. You know that 33 is so old & ancient  (or so the young un’s at work inform me!) The knowledge that I am in the percentage of woman who have this disease removed only to find it returns within 5 years. The emu (aka head in the sand) in me wanted to believe once it was out it was gone for good. I mean truly, my specialist didn’t make a big deal of it – why should I? I was only a moderate to severe case. I wasn’t classed as severe. I even think my last op was only classed a level 3 excision.

Yet here I am, a statistic – it was removed and though the pain never went away (if anything it was actually worse)

To make matters worse, I also got an all clear at the beginning of 2010. I was cured. I was shocked. “OMG pregnancy really DOES cure Endometriosis… who’da thunk it”

Not to mention really embarrassed that I had gone through an operation only to have nothing found. I started questioning whether my pain was real, or had I imagined it. Maybe I was too busy popping pills when I really needn’t of have. My specialist said that sometimes woman can have all the symptoms remain, but no active disease. She said this is parts of the disease that has them stumped. Suddenly it had gone from I have endometriosis to a phantom pain that had me questioning whether I was just being a big fucking girl. 

For the next 6 months, I just got on with it. Crippled monthly with pain, thinking it was all in my head and thinking that I should just suck it up princess. I even tried going cold turkey on the pain relief pills… WTF was I thinking – big mistake BIG! Then I found the lump (aka the nodule) of course it couldn’t be endometrios. Not again. No way was I going through another operation only to find out it was all in my head. I put it down to scar tissue from the operation and put it out of my mind.
These things have a way of niggling at the mind. Worrying. Fuck me, it was a bloody lump (and quite a sizeable one that I could feel) so I finally took myself to the GP and sure enough I walked out of there after 15 minutes with the duck bill with a bill for $90 and a referral to my specialist.

Now more than $1500 later, it’s been confirmed that the pain is NOT in my head. The endometriosis is back. This time with a vengeance and as my specialist read through my notes over the past five years she finally admitted that it was deep last time. Very deep. She remembered peeling back the layers and it kept on going. I should have cottoned on when it turned out to be a 3 + hour operation (though I had focused on my bursting appendix at the time, the endometriosis really paled in comparison to that story ;)

This time I am wiser and under no such illusions that it will be easy. And perhaps this is the very reason I am scared. I’ve been told that the operation will involve scraping and peeling the scar tissues on the sides of my pelvis (?) area then they will work their way down toward the nodule, cutting and peeling as they go. This time I know it’s deep, very deep, perhaps deeper than the last operation.

Deep and extremely painful. Finally the pain I have been feeling has a name once more. It is endometriosis and it fucking hurts.

Of course this just brings about so many worries about my immediate and long-term future. I will always have this disease no matter if it’s active or not, and I’m so over it. The thought of a future with operation after operation scares me to drink (which only worsens the endo symptoms) I truly wish it would just fuck off and leave me be.

Yet Another Intro

Hello & Welcome to my regular readers who may find themselves here through a link on one of my other blogs.

I finally took the plunge and decided to come out of the closet - hypothetically of course. While originally I had set this blog up under a pseudonym so that I could speak my truth freely without worrying that sharing my real deep down feelings with my friends and family as well as regular readers because this other side of me - my Achilles heel if you will – at the moment is not pretty!

I am still bloody scared, I worry that those of you who know me in real life will read my posts and worry about me more than you really need to be. Because contrary to my previous post, I am fine (not right now, but I will be) at the moment I am clawing my way back and I will not let this beat me. So while I work through my issues and keep myself from spiraling into a pit of depression (it’s not that bad, but I can’t be sure as I’ve never been depressed before… let’s just say I have a much clearer picture of depression after the lows of the previous year or so)

Though I am bewildered & unsure what the future for me may hold for me while I fight this disease, my only answer right now is to stop hiding behind a name on the computer. I need to get this out there. If I can help ONE person in their own fight against endometriosis and have them feel less alone, then I have done a good thing.

So this is ME, in my own words and yes I will probably get things wrong every now & again, because I am writing through my emotions and right now – this is me struggling to COPE. So please don’t tell me off when I’m wrong or give me stupid advice. Support me, understand me and most of all – leave me some comment love so I know who is reading!

There is & will be a lot of swearing on this blog.

There will also be a lot of woe is me to my posts.

There will be a lot of talk about my plumbing ;)

There is & will be some gory photos

There will most definitely be some poor taste humour (mainly aimed at taking the piss out of myself, as I do that the best)

Remember this is MY place to rant, rave and scream at the injustices of the world and yet while I do this although at times it will seem to you that I have no compassion for others and their plights, just remember deep down I am a totally compassionate person and for that reason I struggle more when I get angry about silly things.

So if you don't mind the odd use of the F word, and can see past my rants about things I hear mentioned on radio, TV and how friends are having baby number 15 and why the world is so terribly unbalanced and how about sharing it around some. If you are cool with all that then welcome aboard and enjoy the journey – destination unknown!

If you can't handle the truth then I suggest you walk away now. This blog is not fluffy (like my craft blog) nor is it happy families (like my photography blog)

This is my flip side, a searing pain that at time feels all encompassing and though I know it too shall pass at the moment it feels far from my grasp.