Midweek rant

Feeling somewhat frustrated on Tuesday afternoon trying to make my way through a very busy City Centre in hail, rain and shine (this is Spring in Ireland lads) I felt the familiar twins of a cyst twisting on my ovary, pinching me, building pressure and taking my very breath away. I can be as stubborn as a mule at times so I won't given and sit down when I feel that pain although this could also be due to the fact that I would consider myself to have a lot of inner strength (I'm the year of the Ox, might have something to do with it?). I did however pull my snood up over my nose, take some deep calming breaths and did my best not to publicly break down crying. Would have been mildly embarrassing. This was the first incident the boyfriend has actually witnessed and to give him the credit he's due he didn't freak or overly fuss. It can be incredibly difficult for people to get that balance just right but I think he managed it ok. I got through the initial waves a pain and spasms and it wasn't until later that evening that the cyst finally burst. I am prone to fluid-filled cysts and have been to A&E a few times because of them.
(If you have any signs of symptoms of cysts you should present to your Doctor of Hospital)
I get these quite regularly and some are worse than others but it's amazing how much pain we can actually handle. So, when I stumbled upon this graphic during the week I found it incredibly apt and I just thought it sums up alot of the time how women say to me they feel.

We'd love to say "up yours" to Endo, to our uterus, to our tubes, ovaries, wombs, colons, appendices and any other part that aches and gives us terribly unbearable pain. This should be put on a t-shirt. It's eye-catching enough to get people talking anyway.

On Monday I began taking Cyklokapron. It's something I do not like to rely on or have to use but it's time as I've been suffering with menorrhagia again. That and Primolut have become the only two "solutions" for me. According to my Specialist they need to be as conservative as possible with their approach. They must try to preserve my fertility and apparently there are only so many times they can "rotate" the ovaries.

Everytime I attend the hospital I see a different member of the team with a different viewpoint, a trying to make a name for themselves. When you're eighteen they want to operate and pump you full of drugs and hormones and damn the long term effects but ten years later when your chart is one of the biggest the have, when nothing's worked for you, when even the specialist has said "I dont know what to do with you" you feel like you have become a nuisance to them. You're now that black mark on their record.

Should it be this way? Of course not! But how does one person make that change?
By saying;

Stay strong my Sister's. Love you ladies XxxxX 

Possibly the best advocate

Over my time campaigning for awareness I have come across one name time and time again. If you have just been diagnosed, are still learning about Endometriosis or just want to know more I think Nancy Peterson is among one of the many brilliant advocates we have for Endo. You can find info here;

http://endometriosis.org/news/support-awareness/recognising-endometriosis-advocates-nancy-petersen/

A shout out to my Supporters

Recently I've noticed on Facebook a trend on some of the Endometriosis Support Groups to have a "shout out" to your biggest supporter. It's a fantastic idea and a greatway to let your lived ones, friends, family whoever really, fur babies included that you acknowledge and appreciate their support whether your at the beginning, middle or end of your journey with this illness.

I know sometimes. I get caught up with different things and especially when I'm having a bad time with my Endo I can forget about what my family might need.

Honestly my biggest supporters have to be my Mum and Vicky. Mum has been there with me all of the way since age 11, all the way through the tests, the surgeries, the treatments and of course at times the somewhat painful, uncomfortable and degrading side effects.



How she put up with me when I was going through rounds of Clomid I'll never know. I was a hormonal mess. Between that Decadently and Depo Provera shots, HRT, trips to A&E, hospital stays, countless hot water bottles, discovering the electric heat pad for me. kindness, love and encouragement. I think the Woman  deserves an award. My Mum means the entire world to be and there is.no possible way I'll ever be able to thank her for everything.g she has done for me and for everything.g she will do for me. I categorically live her with every fibre of my bring and truly believe she's entitled to a shoutout for everything she has sacrificed to make sure I'm well and rake care of. She doesn't let it show too much how difficult it is fir her to watch me go through pain and I know she feels helpless but that kiss, that cuddle, the hug every morning and the love you every night. That's what get you through. I try my best to make her proud and be strong for her and Vicks.

Vicky is like a breath of fresh air. She was about 12 when I first attended the hospital and I do recall her very kindly help.g me ti shower the day I came home from surgery. She even shaved my legs. Fond memory. :-) it's silly things.g's that I remember, that I'll hold onto. Vicks always listens to me, gives some amazing advice and is growing into an incredible young woman. She very sweetly offered to be my surrogate if I ever got to that point. The thing is I know she would actually do that for me. We have a bond that transcends time and space



I don't tell her often enough how unbelievably proud I am of her and her accomplishments to date. She will most definitely leave her mark on this world. You just can't be around and not feel happy.
The first time I saw her I felt an overwhelming surge of live for this tiny being. I took her hand and she held my thumb so tightly that it was there, in that very moment we bonded. Our twin souls had found each other again. she is my Bobi and I her Pipi. Only we know what that means. We have our very own language and the five years between us that once seemed do monstrous a gap is no just the blink of an eye. So she too deserves a shout put. For all the times I was anf will be moody, snappy and too sarky I love you Bobi for loving me and never once making me feel like damaged goods.

You help build my confidence and make me believe in who I am. I could go on c and on really but I must stop.

I am so lucky to have these two strong. Beautiful. Intelligent women on my life.

So thank you!

XxxxX

The Three Musketeers 13th March 2014
Million Women March for Endometriosis

Mum and I with a somewhat blurry Coco.

My Bobi and I. Cuddles! Always makes me feel better. Endo had a good hold on me at this point but Vicks is keeping me smiling here.


.

Just before Christmas 2013. Vicks and I being silly and makeup free.When we get hyper it's like being a kid again with her. I hope that never goes away.

Take a deep breath and place bot feet firmly on the ground. Tap into that natural raw energy from the Earth, draw on it and face each day as it comes.

Personal Discovery

I'm aware that I can be a somewhat stubborn person. I can dig my heels in about an idea and refuse to give in or go along for peace sake. So I do not enter into situations lightly. I like to assess, carefully calculate any risks, know my opponent/s and gave all the information to hand so to speak. This has mainly been my approach with fighting Endo. To learn as much as I can, to study and listen to my body, keeping a journal of important information for my Doctor's so we can attack the situation. It's proved very useful over the years but has maybe leaked into other aspects of my life and it's only recently that I've realised this about myself.

There are certain social situations that have occurred lately and to be honest for once I've not immediately known how to react. I've had to go off the cuff. It's surprising to me because I've dealt with some fairly complex situations and logic has always been my companion. Chemistry and biology it seems now is my challenger. I have built up a wall, an invisible, theoretical wall but a shield nonetheless. Here's the thing. My filter is wobbly. I'm ready to deflect comments straight away, make light of situations or do anything that involves my not actually having to answer a personal question. Comedy and sarcasm are two ways I respond in many situations. Other than than I can get lost inside my head.

Here's the other thing. My charming, handsome man I've been dating is incredibly different from other people I've known. There's a strange sense of coincidence's and without meaning to we share similar thought patterns and beliefs. It's a statistical anomaly for the scientific minds and a happy coincidence for the wishful thinkers. But for those of us who have a deeper spiritual connection we may find something else is at play here. Something you can't control.

You don't necessarily want to yet part of you wants in on the plan. Whatever it is, I know I don't stop smiling when he's around and he's already charmed my Sis and Mum, says incredibly sweet things, thinks of the minutest detail that let's you know you've been thought about, makes me feel really comfortable and I'm almost waiting for someone to call "cut!". It's crazy, ridiculous and slightly mad.

But one must try to keep a level head here. I'm not the swoon over the guy type. I'm also not usually this frank about discussing any matters that may fringe near my "lub dub machine" but there we go. 

To continue my ramblings,  I can literally count on each hand the people in my life who I would consider to actually "know me", the real me, the one without the shield, free from constraints of sarcastic deflectation. I'm ok with that. I trust those people and yet even with them sometimes my guard will go up. (Yes, I'm truly aware the issue is within myself and I'm a work in progress so no need to point it out.) 

He wants to know more and more about me and for once I am not hesitant to share my secrets.  To say I feel bare when he looks at me is an understatement. To quote James Cameron, it's like a scene from Avatar, he's actually said; "I see you" and I know he's not referring simply to my physical being. I also know it's not simply just a physical attraction. 

My thoughts are jumbled. I know I'm a culprit of overthinking but I need to get a grip here. I'm like an open book at the minute and I'm unsure whether to reign it in or let my mind run wild and free. Just let go a little bit, loosen these constraints I've held over myself for so long.

I'm on the edge of that cliff, the hand is being held out for me. Do I grab hold and jump? I guess I'll find out soon enough.

Love you guys XxxxX

Fur Babies

I think it high time I introduce you to my fur babies. These are my little companions, my comforts. They instinctively know when I'm in pain. It's incredible really. In total we have 6 cats, two male, four female and one very adorable puppy.

They are like an extension of my family, another branch of support. There in the good times and we have great fun. But they never leave me when I need them mist. Even when I think I want to be left alone and dont want any social interaction they will come over to me, not all at once, and either sit on my lap or curl up at my feet, even sometimes curl into my stomach if I'm lying on my side.

They are truly remarkable and some of you may think I've lost the plot talking about what you would consider "pets" but they are so much more than that to me. You can get me a ticket for the crazy train if you wish but I won't be getting on. My fur babies are great comfort and joy and they deserve a shootout today.

Love to my Endo Sister's
XxxxX

Coco (Our seven month old puppy. He's a miniature cross between a King Charles and a Jack Russell Terrier) Such an affectionate little guy. He has the run of the house, will only sleep on a double bed and will eat anything. Thinks he's human. Favorite toy at the moment is a seashell(go figure) Best friend is Caspey. 

This extremely handsome guy is Beau a.k.a Beau Bonnell, Tommy Beau Beau, My Liege, Sir Lionheart, Lord of Banniballia, Bannibals, Jelly Belly, Freckle Face, Beau Beau Baggins , and Monkey Man. Beau is Vicky's baby. My fur nephew if you will :-) He is the Father of the three Babies which are coming up next. He enjoys Tuna, chicken, lasagne anf meatballs. He's obsessed with Game of Thrones and thinks he is a King. Beau Beau enjoys his tail being pulled, his ears and head being scratched and under his chin. He gets very dribbly and will drool and purr loudly when happy. He's also been known to snore quite loudly. 

Here we have Merriadoc Brandybuck a.k.a Merry, Sketchy, Sketchy Etchy, The Elusive One, Mer. Merry is one of the three kittens that were born and since a baby she's had a very unique character. She really only likes one on one human interaction. Any sudden movements and she's out of the room in a flash. We slag and say she has secret tunnels around the house, she moves that quickly and quietly from room to room. She was the first kitten to open an eye. The were born on the 8th of September 2008 and in the 9th she opened one gorgeous bright blue eye. So I called her "one eyed Joe" for a few days until I decided on names. She enjoys her cuddles when she let's you. Catching her for wash time and nail trimming is a nightmare but I wouldn't change her for the world. 

Here we have Star a.k.a Star Bar, Shaky Legs, Missy Moo, Yippy. Star is the Queen. She's my Mum's baby and Mother to the three kittens. She has the funniest miaow. She yips instead, like she's talking to you. She purrs like a helicopter, struts like Marilyn Monroe and at the moment likes to hang out in the kitchen. Her are Beau were rescued from a Green Recycling Bin. Someone had put them and another kitten in the wheelie bin. The lady that found them kept the other kitten and we took Beau and Star. Vicks had wanted a kitten for a long time so two was a nice surprise. They were so tiny. We knew nothing about cats so didn't realise we had a male and a female until Star began putting on a considerable amount of weight on one side it seemed. Vicky's friend had cats and pointed out Star was pregnant. Well we got Beau neutered right away. Then got the stethoscope out and heard the heartbeats of the babies. She was carrying one on her left, two on her right side. Then they began kicking as they grew. It was amazing. Vicky made a nesting box for Star to give birth in when the time came but Star had other plans. It was the crack of dawn. Everyone was asleep. When suddenly Vicky screamed "Come quick, she's had them!" Well we all jumped out of bed and ran downstairs. There was Star, on the armchair in the living room, curled up with two beautiful little babies. We were amazed. Everything was so neat and tidy. Mum heard an eek sound and sure enough there's another kitten after climbing up the armchair to the top. So Mum placed the little one back down to Star who immediately began to groom her baby. It's a day I'll never forget. I'm so glad that things turned out the way they did. I wouldn't swap my fur babies for anything. 

Caspe a.k. a Caspey, Crispy Cream, Crispius Cremus, Baby Man, Caspey Doodles, Eek! Casper is my little baby. He's the youngest Cat. I rescued him on the 31st August 2010. This date happens to be my Grandfather's Birthday. He's in spirit twenty three years and honestly on that day I had no intention to get another pet. I mean we had five cats at this point. But I was out shopping with my Mum and a friend at the time and I had a sudden urge to call into the vets to see if they had any kittens that needed a home. They had had two kittens but one had just been rehoused. Casper's Brother had literally been taken just before we got there (I probably would have taken them both) so he was all alone. This tiny black and white balk of fur with icy blue eyes. I just had to bring him home. So our vet is linked with the DSPCA (Dublin Society for Prevention of Cruelty to Animals) and they will do a home check before they release an animal into your care. Well the two ladies came straight out to the house, met the cats. We had a lovely chat and a cup of tea and within a few ours Casper was in the palm of my hand eeking his little head off. He has a habit since a kitten of sucking his leg, he kisses you and rubs his nose up against your face, sits on your lap and always curls into my tummy when my Endo is bad. He a company animal. He has an addiction to dreamies and the felix goodies. Once he here's the bag opening he runs for them.

Star and Merry

Indy a.k.a Indian Jones, Fluffy Princess, Adventure Kitty, Ind. Indy is a really quite, no trouble at all cat. She will venture upstairs to me when I'm lying out and simply curl up behind my knees or my back. She loves company and human food. I actually think she has hollow legs. Either that or she's storing up for the apocalypse. Anytime the fridge opens she's sure to be there chancing her paw for a treat. She has inherited many of Star's traits, even a little bit of the strut but at the same time is such a character all on her own. I swear she doesn't groom though I think her philosophy is "why should I do it when these giant hairless cats are willing to do it for me?" because sure enough anytime you pet her you end up coming away with excess fur. I devised a method of "plucking" her. It's much more gentle than it sounds, trust me. She loves it. I'll post a video one day maybe. 

Afternoon nap. Auntie Vicks and Casper chilling out.

Casper and Star Star has somewhat adopted Casper into the fold now)

Th three Babies. They used to sleep like this alot.
Pip, Merry and Indy

One of Merry's many hiding spots.

Perrigrin Took a.k.a Pip, Pippin, Pippy, Pippy Long Ears, Pipple,Peaslip,Pippy Doodles, Pippla, She who whines alot. To say Pip is a character doesn't begin to explain it. She is hilarious, stroppy, living and moody all at the same time. Like a teenager. It's amusing. She got herself locked inside the local Church for two weeks one Summer. I was convinced she had been stolen or knocked down, something awful. I couldn't sleep, my stomach was in knots. I was so upset that I scarcely believed it when she came sauntering back in the door. It was a warm Summer's day. I was trying to study, Mum was in the back garden and in strolls Pip. She was so thin from not having been fed but oh was I glad to have her back. I spoiled her rotten. Gave her anything she wanted but all she wanted was her normal food and her spot on my bed and company. Her and Coco have a love/hate relationship but I think they'll get there.

Beau looking very fetching.


I'm fully aware that this post has nothing to do with Endo as such but these guys are also in a way part of my support network. They offer unconditional love, never judge and I don't have to ever explain anything to them. I have a great respect for animals and through my own personal beliefs I know that we are all connected in such a way that language isn't the only way of communicating.


Anyway I hope you enjoyed getting to know my fur babies. If you guys have any, please feel free to share.

Love to my Endo Sister's and their families.
XxxxX 

Our first annual March for Endo 2014 (photos)

Although the event actually happened on the 13th of March, almost a week ago I am only now able to get the photo's to you. This is partly due to the fact that the photo's were taken on a Friend's camera and partly due to the fact I have been in considerable pain so it kept going out of my head.

Without further ado I give you photographic evidence of our March for Endo event 2014;

Mum and I (Both diagnosed with Endo, Mum had a hysterectomy at 32. I am currently fighting stage IV) Mum could not be anymore supportive of me if she tried. She is my biggest advocate, my counsel and my best friend. To say I love her doesn't even begin to explain it. I have a great respect an admiration for my Mum. She is one of my champions. She knew by my symptoms at an early age, having had Endo herself that something wasn't right and she fought hard until I seen a specialist and underwent tests, surgeries and treatments. Without her help I would have been waiting a lot longer to be diagnosed.

My Sister's (Kelly on the left Vicky on the right) Vicky is my baby Sister, my Bobi. She is the yin to my yang. Kelly is her best friend and has been "adopted" into our family. She is like another Sister. She is incredibly supportive of this cause as is Vicks and I love them both so much. They always make me laugh and smile. Neither, thankfully have been diagnosed with Endo. Due to our strong family history with Endo we do keep a close eye on Vicks and Kells is well aware of the symptoms.

A group photo on March night.

I have always been adamant that men should also get involved in spreading awareness of Endometriosis. A better understanding of this illness needs to happen. I don't know why women want to hide it away. As one of the symptoms can be painful sex you need to be able to speak frankly with your partner about Endo. I'm not saying shout it out on a first date or tell every guy you meet as you introduce yourself but it is part of us whether we like it or not. We need to accept it and then others will be able to accept us as we are.

All of my friends male and female are aware of Endometriosis, what it is, what the symptoms are, and the ins and outs of it. From the guys point of view the majority have the viewpoint that they are glad to know because if they were involved with someone who was displaying any of the symptoms and they weren't aware then perhaps they could encourage them to seek medical help and maybe get diagnosed. This is all hypothetical of course but it's a good point I think.

Well that's enough of that. We will continue to raise funds for the EAI through the sale of our charity t-shirts.

As always, stay strong my Endo Sister's
XxxxX

Ah insomnia, how are you?

As I mentioned earlier I've been having a bit if a rough day. I didn't really sleep at all last night and today I felt so sore and my muscles felt so heavy that I knew I was over tired aswell.

So I took my nighttime medications around 20:45 thereabouts and nothing. No relief nor hint of the sweet release of sleep
 I feel like a snake curled up, head in the air, ready to strike. My Mum has been absolutely fantastic today. She never makes me feel guilty when my Endo flares up and I can't do basic chores. She actually told me to "stop saying sorry". Do as you're told I guess.

Anyway, I digress. Here are some photos of my"Endo face ",  taken about two hours ago".

Stay strong my Sisters. Love you all. XxxxX

Mini Rant (not enough energy for a full one)

It's 20:00 here in Dublin, Ireland and to be quite honest I have been about as useful today as a butter knife to a T-bone. Since last night I've been in a considerable amount of pain which over the day has been exhausting every inch of me. At this very moment my back aches, my pelvis obviously, my thighs, shoulders evenot down to my ankles are sore. I feel like someone came in a kicked me around for a while without my knowledge. Or lije I'm being slowly squeezed out by thorns or wire of some sore. It's sharp, pointy evil shooting pain. This picture actually helps a little to describe it.

I know this may read like a massive whine and plead for sympathy but do not mistake me. When you feel like you have a dozen knives slicing through you and ten hands tearing you apart all while you try not to vomit, keep taking in fluids and cling onto your last bit of sanity so you don't pass out, the last thing you're looking for is someone staring at you with an "oh you poor thing" face. Girl power and all but ease.up a little lads.

I pledged to keep writing especially on the bad days when the pain is freshly in my mind so I'm afraid you're all getting it both barrels. There have been comments on my FB page of the same name as tjis blog saying some very supportive and sweet thisng's. One word that keeps cropping up however is "brave". It's not brave to show my face through this process. I think rather you, the reader, are the brave one, you don't know what you're about to witness or read. It's my goal to spread awareness about Endometriosis so we need to stop hiding and end the silence.

I am utterly shattered so I am going to bid you farewell for now and I'll update soon.

New Perspective

This post has been on my mind for a little while now but with my attention being focused on events last week I just haven't got round to it until now. This year so far for me has been very fortunate. I've,touch wood, not needed to attend the hospital or the ER and my Endo has generally been at a tolerable level. Obviously some days are worse than others,we all know how it goes.

Through my writing and general talking, spreading awareness about Endometriosis I've made a lot of friends, Endo Sister's and contacts with various charities. However, recently I've been dating a very charming, handsome, interesting man. (I won't list too many things here or I will get off point) We have been communicating for quite some time now and from the beginning of our friendship, earlier on this year,he knew all about this blog and my efforts to organise a Mini March for Endo. It's refreshing to be able to go on a date and not feel like you have this big secret that people will judge you by. For me anyway it's rare that I find men to be forwardly curious about Endo. I have a few close friends who would know what it is from obviously over the years being around me but never straight from the get go. It's interesting. refreshing and slightly relieving all at the same time. (Although I could be just mesmerised by his accent, he's half French. We'll see.)

I don't know about anyone else but I've gotten very strange reactions to my Endo. One friend stopped talking to me after she gave birth saying she thought it would be too weird for me to be around considering I was told at the time I couldn't conceive. The prognosis has since changed for me but the friendship suffered greatly.

I don't like to be treated like a fragile piece of glass that will shatter at the slightest touch. People don't need to walk on eggshells but it's funny how they react.

I digress. So, we were talking about my fundraising and Endo Awareness and he (the spellbinding accent guy)was very interested to just know more about why it's not being made as publicly known as it should be. It was an intellectual conversation not an "oh poor you with the dodgy womb" conversation.

One night after we were chatting he sent me a YouTube link. It was a lecture been given about Endometriosis and the link between a lack of iodine being the cause.

If you simply Google, Iodine, Endometriosis, you will find a ton of legit page's of research stating that it stands a good chance of curing Endo.

I found this link below myself. They state that if Iodine can cure Fibrocystic Breast to Disease then it can cure Endometriosis.
http://curezone.org/faq/q.asp?a=13,281,2962&q=595

There's no harm in looking for alternatives. I feel that people will enter and exit your life when they are meant to and if nothing else this has given me an entire new perspective on my approach towards alternative remedies.

As always, stay strong.

Xxxx

Hello Endo my old friend

I made it through Paddy's Day without an incident. My lower back was achy and as usual the ovaries were fighting over who loved me the best, although showing it through pain is not ideal for me.

Cut to 22:00 thereabouts, my Endo starts attacking, a flare up I'll call it for now. In keeping with my no holes barred approach this year here's how I'm looking right now. (Pic's below)

Not a comforting site I know. But I will get through it. I have an amazing family around me and some very understanding friends.
Let's hope this flare up doesn't out stay it's welcome. Other than that life is good.

Love to my sisters and their families.

Stay strong
XxxxX

Happy St. Patrick's Day

It's 

So have a very

And remember 

Slàinte my friends, at home and abroad 

Sure, if you can have a pint of the Black Stuff. It's full of iron don't you know? 

Hope you're all doing well. Happy Paddy's Day! XxxxX 

Family Support

I have mentioned before in my posts how important I feel it is to have support from your family while going through the mind blowing, body ripping, emotionally draining fight that can be Endometriosis.
Now I say "family" but this dynamic can come in all shapes and forms. You don't need to be blood related to be family.

Family to me are the people who love you unconditionally but will put you up on your bull without qualms. They are the ones who will comfort you and laugh wildly with you at inappropriate things. They never judge you, but accept you for who you are and you likewise them.

For me, my family are the ones who I can be 100% open with. I'm not afraid of who I am with them. My illness is not a seen as a weakness but when I have bad days there us no guilt there. I guess it's acceptance of who I am, entirely. My quirky sense of humour, shyness, choice language and intense passion for Rugby are all parts that join up to make me the person I am and to not have to answer for that is to feel safe and wanted.

It makes going through this battle with my body more bearable. When I feel as if the pain will never end and like pieces of me are literally being torn apart. When I'm burning up or passing out or my legs refuse to hold me anymore because all of me energy is focused on getting past this, getting through and for me avoiding the hospital because I am sick and tired of the "routine", knowing I have the love and understanding of my family, my supporters, the people I would trust with my life really does make all the difference for me.

Even if you only have one person that you feel this way about. It's one person who completely understands you and accepts you for you and that is priceless.