Thursday, March 8, 2018

Sin a Bhfuil - The Unexpected Hysterectomy

It has been just over 2 years since I last posted on here. Our lives have changed immensely since we became foster parents. We have been extremely busy with all that this entails - the struggles, the challenges, the uncertainties. It is certainly not easy, but nothing compares or could possibly have prepared us for how rewarding it would be. I have spoken many times in the past about how our house has been way too quiet at times. That is a problem that we are very happy to report that we no longer have.

As rewarding (and noisy) that life has become for us, unfortunately had not eradicated my gynae issues. I continued to have regular ovarian cysts on my left side, several of which ruptured causing incredible pain, my cycles - while fairly regular, continued to be extremely heavy and painful, and the chronic pain that I have in my left lower abdominal area just never got any better. I was ranging from varying levels of discomfort to severe pain, swelling and debilitation every month.
Another thing that really hasn't changed is my extreme dislike of taking medication. I will take pain meds when I feel it is absolutely necessary, but I would still much rather not to have to take any medication. 

In search of some kind of solution, I went to see my G.P. about 4 weeks ago. We discussed several options, including the possibility of having a hysterectomy sometime in the future. This was something that would need a lot of consideration, not a decision to make lightly. My amazing G.P. wanted to be sure that I was well informed. He told me that even if I decided in the future that it was something that I wanted to go ahead with, we would need to carefully consider the details. Considering having my womb removed would be one thing, but if I was to consider having my ovaries removed also - I needed to be acutely aware that this would catapult me into surgical menopause, and while he is very aware of my dislike of taking medication - even though I would probably tell him that I would just put up with the menopause symptoms instead of taking any kind of hormone replacement therapy - he would not be happy for me to do this as I am about 17 years off going through natural menopause and the risk of developing osteoporosis would be far too high. 
He was sending a referral letter to my Gynaecologist and suggested that having a mirena coil inserted might be a good way to help manage some of my ongoing symptoms, even though this would not help with ovarian cysts.

I left his surgery that day with a whole lot to think about. I felt assured that there were several options to consider, and looked forward to discussing these and any other options with my Gynaecologist.

I went to see my Gynaecologist 2 weeks ago and we had a long chat. He did an internal scan which showed something unusual in my womb. This would require investigation. He suspected that it was adenomyosis, a condition in which the inner lining of the uterus breaks through the muscle wall of the uterus. We spoke about how frequently I was suffering with ovarian cysts on the left side and as there was only just less than half of my left ovary remaining, it made sense to remove it. I also agreed to have a mirena coil inserted. A plan was put in place for me to go into hospital on the morning of the 5th of March, be put under general anaesthetic, have my womb investigated, the remainder of my left ovary removed laparoscopically, have a mirena coil inserted, and be able to go home that evening.
I was feeling good about this. I have great trust in my Gynaecologist and really felt that this was a positive step towards a less painful future.

As has come to be expected in terms of my luck with medical procedures - things did not quite go to plan. In fact, things really, really did not go as planned.

We arrived at the hospital early on Monday morning. I got checked in and was shown to my bed in the day ward. I had to give the usual urine sample - you know - just to be sure. (We always have a bit of a giggle about that.) My Gynaecologist came around to see me and talk through exactly what was going to take place and everything that he was going to do. As I have had so many previous laparoscopic surgeries and have found it difficult for the wound in my belly button to heal the last number of times, I asked him if it was possible to do the surgery using a different point. He said it is possible to use a point up near the left rib cage, however it tends to be a bit more difficult. We agreed that he would attempt to do it using the point up near my left rib cage, but if it was proving too difficult then I was happy for him to use the site at my belly button and we would worry about the healing afterwards.
I was feeling good, I really felt that this was going to be a positive step.

My anxiety didn't set in until I was being wheeled to the operating theatre. I met with the Anaesthetist  and we were joking about how terrible my veins are. He suggested that he could put me out with gas and then insert the needle if I would be happier with that. I told him that I'd rather he put the needle in and put me out that way as I've had issues with vomiting after using gas in previous surgeries. He got the cannula in the back of my left hand on the first attempt. It hurt pretty bad so he used some local anaesthetic to sort that out.
I was feeling good, I was feeling in control and that I was really being listened to. I was happy with how things were going - so far.

The Anaesthetist gave me some medicine through the cannula to help me relax a bit and then told me that he was going to start putting me to sleep.
I expected the shock, the fear, the urge to fight the anaesthetic that I have experienced so many times in the past. It never happened. I did not feel myself going off to sleep at all.

So far all is going great and I'm sure I was probably still feeling pretty good at that point.

Until... I woke up in the recovery room, after 4 hours in the operating theatre to overhear my Gynaecologist speaking to my husband on the phone. He said that I'd had to have a hysterectomy. I brushed it off. Surely that couldn't be right. Surely I was just groggy and imagining things. We've all seen those videos on youtube of people hallucinating while coming out of anaesthesia. But, then he said it again - he said 'hysterectomy'.

When he had finished his phone call he came over to speak with me. Before he could say anything to me, I said 'I heard'. He said that he would come and see me shortly, once I'd had a bit of time to wake up and recover a bit from the anaesthetic.

I felt like I was fairly 'with it', but I kept telling myself that I couldn't be. I was imagining things. I kept telling myself that I would find this very funny later when I'd be telling Patrick about the crazy things I was hearing and seeing after the operation. I told myself that I just needed to sleep it off a bit and all would be fine when I woke up properly. I felt like I was in an elevator and then I heard the porter ask somebody 'which room?' and was told '16A'. I thought 'gosh, I must really be out of it - they're taking me to a different room'.

My Gynaecologist came to see me shortly after and he explained to me that I wasn't imagining things. He had said 'hysterectomy', but it was worse than that.
He had gone in and removed the remainder of my left ovary as planned. He then decided to take a look at my womb, right ovary and fallopian tube - to find a mangled, infected mess. He said it was so bad in there, that there was actually stuff growing on my right ovary. He tried to contact Patrick by phone to explain the situation to him before taking anything else out, but as luck would have it, Patrick's phone had gone on the blink (He had called on the landline after the operation).
He had a decision to make - to either do what he knew needed to be done right then and there, or stitch me up, wake me up, explain to me how bad things are, and wait for me to recover enough to be able to return to theatre for another operation.

He decided that it was for the best to do what needed to be done right there and then. Even though it would be an awful shock for me when I woke up and realised what had happened, it would save me having to return in a few weeks for further surgery. Things were so bad that there was no way that any of my reproductive system could be saved, and so my uterus, tubes, and ovaries have all been removed.

I was kinda in limbo all that night. I thought I was doing okay and was keeping it together. I didn't really sleep that night, just kinda dozed on and off. Even the following morning I thought I was doing okay. I knew that my Dr. had acted in my best interests, and in the long run - it was probably for the best.

I really thought I was doing okay - until the nurse said I could have some tea. I took one sip of tea and the floodgates opened. I cried and cried, and I just couldn't stop. 
About 10 minutes later, my Gynaecologist came in to talk to me and see how I was doing. I was in a room on my own. He walked in and saw that I was upset. I couldn't speak. I didn't know what to say. All I could get out was 'tea'. Yep, I told my Dr. that I was crying because of tea...!!!

He explained to me that I had just had an awful shock and my body has been through huge trauma. He said that it is perfectly normal for ladies to be upset and emotional even after a planned hysterectomy, never mind waking up after surgery to find out that your whole reproductive system had been removed.
I then remembered the one thing that I had been trying to avoid. I remembered what my G.P. had said about being catapulted into surgical menopause if both ovaries were removed. I had almost laughed that off because there was no way that was ever going to happen. I had never had a problem with my right ovary, so there would have been no reason to remove it, and even if my womb etc had to be removed, I'd be okay because my right ovary would keep producing the hormones that would prevent me from going into early menopause.
Just then, it hit me that not only was I heading into early menopause - I was nose diving straight into surgical menopause - and so the floodgates opened again.
My Gynaecologist said that I would probably start experiencing symptoms fairly rapidly and we would discuss hormone replacement therapy options at my six week follow up appointment. I just kept saying that I couldn't believe that this had actually happened. I know he did what he had to do, and I know he did the right thing, but I just couldn't believe it.
He told me that if I wanted to, I could watch the video of the operation at my 6 week follow up appointment.

Right now I am three days post-op and I feel disjointed. I am very sore and in a lot of pain. I am up and down, and I honestly don't know if I am laughing or crying. My head is not in a great place, I am emotional and numb at the same time. This is going to take a bit of time to get my head around, never mind how long it is going to take to recover physically. I don't feel like myself. Even writing this blog post - it doesn't feel like how I write or how I explain things, it's all just disjointed.

I had never imagined that this would ever happen, but there are two things that I know I am happy about; 

The first is that Patrick did not receive that call from my Dr. mid-surgery. 

The second is that after everything I've been through for the past few days - I did not have to come home to a quiet house.

Sunday, March 6, 2016

Happy Mother's Day (Finally...!!!)

I haven't posted in a long time, I've simply not been able to.

My mother died very suddenly in August and that turned our lives upside down, and I had spent much of the time since then between running on auto-pilot, and trying to make some sense of how this could have happened. Shock, loss, grief, it hits you in a way that you could never imagine, and when you least expect it.

I've never made a secret of the fact that Mother's Day has been the most difficult day of the year for me for many many years, and I was especially dreading Mother's Day this year, because not only would I be grieving for our 10 little angels, but not being able to spend it with my own mother... I truly didn't know how I would cope.

Well then..... this happened.......

On the 13th of January, Patrick and I were officially approved as foster parents and on the 27th, we got a call to say that there was a newborn baby girl still in hospital that needed a loving home. I spent 2 nights in hospital with her in a cot beside my bed, and then we brought her home. 

Our lives have been super busy since. I have taken extended leave from work and am enjoying every single second with this perfect little lady (even the endless night feeds :-) ). 

And the best Mother's Day present ever....... she slept all night last night for the first time...!!!

Thursday, June 11, 2015

Graduation Heartache xx

We have Graduation for our Montessori classes at work on Saturday. This is a beautiful and very special occasion every year, it is something we work towards and look forward to for the whole year, and it is always the most amazing way to celebrate the boys and girls who will be leaving us and going on to 'big school'.

As beautiful as Graduation is every year, it is also extremely difficult. We are essentially saying 'goodbye' to these children who we have gotten to know so well, some of whom we have worked with since they were less than a year old. In 6 years, I have not once gotten through Graduation day without fighting back the tears at some point.

After last year's Graduation I braced myself because I knew that this year was going to be the most difficult one yet. I tried to push it out of my mind all year, but as I sit here tonight, trying in vain to write my speech for Saturday..... trying to write with my heart about the children who are graduating, while at the same time trying to block out and ignore what my heart is forcing me to vocalise.

The tears start and suddenly I don't know how I am going to do this. I don't know how I am going to stand up in front of almost 200 people and talk about this class of amazing and ever so special children that I have grown to know and care for so much..... while managing to keep it together and knowing that there is one little boy missing from this class. You see, Saturday is the day that our Noah should be getting all dressed up in his cap and gown. He should be sat on that stage waiting for his name to be called out so that he can come up and receive his certificate and yearbook. He should be beaming while his equally beaming-with-pride Dad wears out the camera taking pictures. 
Our Noah should be graduating from Montessori on Saturday, and heading off to 'big school' this September. 

While this is absolutely breaking my heart right now, I am so honoured to be a part of this for the 22 children who are actually graduating on Saturday, and while holding back the tears has always been a challenge on Graduation day..... I have a feeling that this year it will be a certified impossibility...!!!

Now that I have vocalised this... maybe now I will be able to find the words to complete this speech.......

Sunday, April 26, 2015

Trigeminal Neuralgia.......

I will never write a blog post when I am in a hurry, I have learned that in order to do justice to that post, I need to do justice to myself and give myself proper time to really reach deep and figure out what I am really feeling before I can begin to put it into words. So many things have happened since I last posted, and each time I've wanted to write about them, but I couldn't, and as the things that I needed to write about started to add up I began to get a feeling of being overwhelmed by it all and didn't really know where or how to start, until I got to a point of having things build up so much that 'wanting' to write about stuff - became 'needing' to write about stuff....... so here goes.....

I mentioned in my last post that I'd been left with three dry sockets after having my wisdom teeth surgically removed... well, that was just the beginning. As the dry sockets started to heal, I began to notice that I was experiencing an electric-shock-type feeling any time I would eat or drink, or if cold air got into my mouth. The shocks began with running along my tongue, jaw and lips. I contacted the surgeon who had done the operation and he wanted to see me immediately. That was pretty much a waste of time because he tried to tell me that it was unconnected to the removal of my wisdom teeth and it 'will probably settle down'. Meanwhile, the shocks began to get worse and began running from my lower jawbone up into my eye and behind my ear. They also started coming in attacks which could last for twenty minutes or more, the pain is excruciating when it happens, and it leaves behind a dull ache that can last for the rest of the day. Some days I was having up to 14 of these attacks, fortunately they do seem to be getting less frequent and a good day for me now is to have five attacks or less. On further investigation and consultation with specialists, it is thought that the trigeminal nerve was damaged during the operation and has left me with what we hope is temporary Trigeminal Neuralgia. They were trying different medications and different doses and combinations of medications, but I was finding that I wasn't able to function while taking these medications. I felt like I was in a 'fog' all the time and even the simplest of things were becoming a chore to me. It was my own decision to stop taking daily doses of medications, and one that I don't regret. Yes, If I'm having a bad day of attacks or if any one attack seems worse than usual, I do try and combat that with medication, but I generally don't find that it works very well and the after-effects of the medication are much more long lasting than the after-effects of an attack. I've never been a fan of taking medication, I've just always felt that there has to be another way. Currently, my method of trying to deal with these attacks is heat. If I can get a heat pack near my face (not on my face coz anything touching my face will trigger another attack) during an attack that seems to be soothing and helps me to cope with the pain. Also, I find that drinking tea helps, I guess it's because it's hot as well, but the only thing about this is that I can only drink tea once the attack starts to ease off, and I can only drink it from a takeaway-style cup with a lid that has a lip on it. Tea really helps with the dull ache that is the aftermath of such an attack. The left side of my face tends to contract and become stiff and tense during an attack, I find it difficult to speak or move my tongue or lips. My left eye will almost close and my whole face contorts. I have been told that I resemble someone experiencing a stroke, during an attack. Everything that happens during an attack is very involuntary, I have very little control at all. I find it best to just close my eyes and go into my own little world and just let it happen. I know it will pass... eventually. 

If anybody googles 'Trigeminal Neuralgia', you will see that it is known as the 'suicide disease', that is simply because the pain is so deeply excruciating and unrelenting that you don't know how you can continue to go on like this. I've had a few occurrences where I've ended up in an absolute ball of tears (which makes the shocks worse btw), crying to Patrick that I just cannot do this anymore. I then started to do some proper research about Trigeminal Neuralgia, and found that aside from being unlucky enough to end up with this complication.... I am actually pretty lucky that it is not worse. I read stories about people who've had this for 20 years or more, who've been brushed off by Doctor after Doctor, who've been accused of making it up or looking for attention, or worse..... looking for strong medications. People who have spouses and families who don't even try to understand, they are accused of being lazy and anti-social... and so..... I am very lucky. I made the decision there and then that this was not going to control me, this was not going to stop me from living. 
You see.... I have a husband who knows me so well that he can tell when I'm about to have an attack. He notices twitches in my face that I think I have learned to ignore. He knows that if it doesn't pass in a minute or two that I need a heat pack, and while he's heating that up... he's switching the kettle on to make me tea. I have a husband that knows when I'm losing a battle with an attack and will go and get the medication that I need and make me take it. I have friends who have actually gone and researched this disorder of their own accord, friends who I am so close with that I consider family.... they witnessed an awful attack last weekend, it was horrendous and afterwards I was feeling embarrassed that maybe I had made everyone feel uncomfortable, but in fact, their biggest concern was that there was nothing they could do to help me. It was hurting them to witness the pain I was in and they felt so helpless. 
I had to make a conscious decision to realise that yes, this is awful, but I am very lucky to be surrounded by the people I am surrounded by. 

There are people who go through this for many years and have to cope with feeling 'alone' on top of the pain and debilitation. 

Life has thrown many curve balls at Patrick and I, but for as long as we both inhabit this earth..... neither of us will ever feel 'alone'. 

(I started this post feeling miserable and overwhelmed and needing to write.... and I've managed to write myself into a better mood..... I really should do this more often..!!!)


Sunday, March 1, 2015

Nothing Is Ever Easy.......

We went to the hospital early on the Wednesday morning, I hadn't slept well, I'd been restless all night. I knew this was a simple operation, or I suppose, much less complicated than anything I'd had done in the past, but I was terrified of the anaesthetic. Not outwardly terrified in a panicky way, but I was calmly terrified (If that makes any sense). I knew my wisdom teeth had to come out, I wasn't worried about that part, but deep in my heart I knew there was a distinct possibility that 'that' could happen again, and I was acutely aware of how lucky I was to be alive after the last time, what if I wasn't so lucky this time?

I didn't want to be fussing about it..... or more, I didn't want to be vocalising it. Right before they came to bring me to theatre, I picked up my phone (yeah right, like I'd actually put it down for a second that morning...!!!), and sent a quick email to Patrick who was sitting across the room from me. It simply said 'If something goes wrong, just know that the last ten years have been perfect, because I've spent them with you. I love you.xx.' 

They brought me down to the waiting area outside the operating theatre and I spoke with the Surgeon and the Anaesthetist. They were so amazing. They checked my heart and lungs out properly. The Anaesthetist thoroughly went back through my notes and even tried to contact the previous Surgeons to find out what exactly had happened. They very much put my mind at ease, and gave me their word that they'd 'keep me alive'. 

I had asked the Anaesthetist to put me to sleep very slowly so that I didn't realise it was happening. The worst feeling in the world is that panic when you feel yourself losing consciousness, losing control, and there's nothing you can do about it. With my heart pounding in my chest, I got a bit sleepy..... and then I woke up. I'd been in theatre for two hours and twenty minutes. Of course it was a very difficult extraction, they had a lot of trouble getting the teeth out because all 4 were very badly impacted. When I woke up I felt like I couldn't breathe, my tongue was so swollen, I felt like I was choking. I spent a long time in the recovery room, before being brought back to the room where Patrick was waiting for me. He took my hand and said 'I got your message, everything is going to be okay'. I was monitored for a few hours to make sure everything was okay with my breathing (I always have breathing problems after an anaesthetic), but soon I was given some ice-cream to try and then we were on our way home.

I was still numb for most of that evening, but as soon as the numbness started to wear off... the pain started, and gosh was it bad. The next day, my face was the size of a watermelon. It was so swollen, my lips and chin were sunken in my face. For the next few days the swelling and bruising continued to get worse, the pain was horrific, I couldn't talk - my throat was so sore, and just no sound was coming out when I tried to talk, I could only manage slushed ice, and I was feeling just extremely unwell, it just wasn't right.

One of my dearest friends had the same procedure a few months ago, and she had developed a dry socket (when the blood clot comes out of the socket leaving the nerves and bone exposed and extremely painful), so I was only too well aware of the possibility of that happening. 
By the Saturday morning, three days after the surgery, I just knew something was wrong. Patrick rang the Dentist for me, and he agreed to see me straight away. The Dentist said he has never seen anyone so swollen after having that procedure, and he was extremely concerned about my inability to speak and difficulty in swallowing. Gaining access to the surgical sites was near impossible as I could barely open my mouth due to the swelling, but he managed to get a tiny mirror in there and his immediate response was 'Anne-Marie, I think we need to get you to a hospital'. I had a bad infection and sepsis was setting in. The Dentist rang the Surgeon who suggested getting loaded doses of Penicillin into me immediately, and if that didn't work I'd need IV antibiotics within six hours. The Surgeon had contacted Aut Even hospital to put them on standby, so that if I did need to go there, they'd be ready for me and could administer the medications as quickly as possible.
Luckily, the loaded doses of Penicillin seemed to be working and I had perked up a good bit by that evening. I was then put on a course of 4 antibiotics to keep the sepsis at bay. 

The pain seemed to ease a bit after a few more days, and the swelling was hugely reduced. It seemed that all was heading in the right direction and I'd turned a corner.
Fast forward to Wednesday evening (seven days after the surgery), one of the blood clots came loose and fell into my mouth and I spat it out. The following morning the pain in my upper right socket was excruciating. We rang the Dentist again and again, he agreed to see me straight away. He managed to get the mirror into my mouth to confirm that it was a dry socket, but he then broke the news to me that there is nothing they'd be able to do to treat it. They would usually irrigate it and pack it with a gauze to keep it protected from exposure, but unfortunately the stitches in my gums are too tight and that is restricting my ability to open my mouth more than a few millimetres, this meant that they couldn't remove the stitches for the same reason... they couldn't access them. The Dentist sent me home with a prescription for pain medications, and said that they could try again in seven days, when hopefully the stitches will have dissolved by then and access to the sockets would be possible. 

The pain is awful and nothing seems to be helping much. On Friday evening, two more blood clots came out (bottom right and top left), meaning that I now have three untreatable dry sockets. The pain is dull and throbbing, and is constant. It's the kind of pain that means you can't even hear your own thoughts, nothing helps much, and it is much worse in the morning and at night, and anytime there is cold air.  I am living on a diet of very mushy foods and liquids, anything that doesn't require chewing. 
I'm really not sure how I'm going to put up with this pain for another four days, and gosh, I so hope that these stitches will loosen up by Thursday, so that they can access and treat the dry sockets. 

This has been an awful ordeal and has prompted a lot of 'why does this stuff always happen to me?' and 'why is nothing ever easy?, why does nothing ever run smoothly for me?' thoughts. 
On the upside though, Patrick has had a very quiet few days, due to my inability to speak. My voice is back now and I'm sure he's delighted about that :-). I am really glad that I had all four wisdom teeth taken out together, because there is no way I'd ever have gone back to have that procedure again.

I think I really need to start learning to do things by halves.xx.

Sunday, February 15, 2015

A Little Update.......

I figured it was time for a little update, so here goes.....

You'll recall I mentioned briefly in my last post about being put on a series of injections to suppress my reproductive system, and I said that I would go into more detail about this soon. After my most recent surgery, the pain did not settle down, I was in pain constantly, some days struggling to get out of bed, or stand or walk because it was so bad. I was bleeding constantly, with only 11 days out of 90 that I wasn't bleeding, I was drained and hormonal, and was just in a really bad place. I also had a tremendous fear of developing more cysts while I was still recovering, and with my ovaries being active.... I was just crippled with pain.

About 6 weeks after the surgery, I went to see my GP and we spoke about my options. The one that he felt was the best option was a series of medroxyprogesterone injections which would essentially put my reproductive system to sleep for about 10-12 weeks, which would allow my body to have some time to heal without worrying about cycles and ovulating and all the aches and pains that those things entail... on top of the pain I was already having to deal with. 
I went back and forth on this, it felt so wrong to do that, but being realistic... I knew I couldn't keep going the way I was, so I went ahead with the injections. They did work to the extent that they put my ovaries to sleep, and I did not have any ovary pain for about ten weeks, they did not however, stop the bleeding or help with the pain, and the list of side effects that I suffered as a result of these injections was pretty much endless. The hormones put my body into 'let's pretend we're pregnant' mode, and all the symptoms that went along with that including nausea and cravings, mood swings, insomnia and uterine cramping. The worst side effect though, was hair loss. Yep... my hair started falling out in clumps. I would get out of bed in the morning and my pillow would be covered in hair. It was so bad, that my hair dresser refused to top up my blonde highlights, and instead I had to return to dark brown hair. I know that probably doesn't sound like a big deal, but it was soul destroying for me. The last time I was forced to make that change was after I had to have chemotherapy, and being able to finally return to blonde after so long... well, it was a huge milestone for me because it meant that my hair was finally healthy enough again to be able to be blonde again. So being forced to return to dark brown hair was absolutely crushing for me. I love it now, I really do like it... I just wish it had been my decision to make and not forced upon me by yet another side effect of what life has thrown at me.

I went back to my GP early in January, armed with three pages of notes that I had written of things that I needed to discuss with him. The outcome of this appointment was the decision not to continue with the medroxyprogesterone injections. He also referred me back to the Pain Specialist in Kilkenny, and sent a referral letter to have me reviewed by another Gynaecologist in Limerick to try and figure out why I am bleeding so much. The appointment with the Pain Specialist was 2 weeks ago, and I was in such a terrible amount of pain during that appointment that he agreed to do a Peripheral Nerve Block infusion the very next day. Fortunately, this infusion was successful. I did not have a bad experience, and I definitely had noticeably reduced pain levels for about 5 days afterwards.

Apparently it is just not acceptable to the 'powers that be' for me to have reduced levels of pain, because the very next day I developed a horrid infection in one of my impacted wisdom teeth. All four of my wisdom teeth are impacted, with the bottom two having barely broken through the skin, and the top two look like they are up in my eye sockets. This was the first time that I have ever had an infection in any of my wisdom teeth, and with all the different pains that I have had over the years... I can honestly say that I have never experienced pain quite like that. An emergency trip to the dentist and two lots of antibiotics later... it is finally starting to clear up... just in time for me to have them surgically removed in three days time. 

Yep... another operation, albeit nowhere near as serious as any of the previous operations that I have had, but I am terrified of having another General Anaesthetic. I pretty much pleaded with the Surgeon to just give me heavy sedation, but unfortunately the teeth are so badly impacted and the bottom two are sitting right on the nerve that controls feeling to the bottom half of the face, if I was to move at all during the procedure, there would be a huge risk of that nerve being damaged and I could therefore lose all feeling in the lower part of my face. The other reason is that they are going to have to remove sections of my jawbone in all four sites and that alone carries its own risks.

I am anxious about this, and I'm anxious about the amount of pain I'm going to be in afterwards. I'm being my own worst enemy and google-ing non stop.. and of course finding all of the horror stories.
I think my fear is mostly rooted in the thoughts of having another General Anaesthetic, after my most recent experience, which was less than six months ago. I know it is highly unlikely to happen again, and I know that this is a much simpler operation than anything I've had done in the past, and its pretty much nothing in relation to the operation I had at the end of August... but there is this tiny niggling part of me that keeps saying 'What if?, What if it does happen again?' The surgeon assures me that they will be prepared on the off-chance that it does happen again, and he told me that I will have the opportunity to discuss my fears in depth with the Anaesthetist prior to the operation, so I guess that helps a bit. 

It seems so crazy to me to be having this operation, it seems a bit unnecessary, but I am assured by the Surgeon that if they don't take them out now... in six months time, those teeth will be pushing my other teeth out and then I will have much bigger problems. 

So... wisdom teeth out on Wednesday... allow about two weeks for recovery... and then maybe, just maybe I can have a break from hospitals for a bit... One can only hope. xx

Wednesday, December 17, 2014

Time to Smile xx

I turn 31 on Friday, and this has gotten me thinking about how I spent a whole year of being 30. Realistically, I spent it either having surgeries and procedures, or recovering from those surgeries and procedures. I have spent an entire year in horrible pain, attempting and failing to find something to ease that pain. I'm still having the same pain, it is getting worse and the Specialists are looking at options for me, but I really think I am resigning myself to being in pain for the foreseeable future, and realising that I need to find the strength from within myself to cope with that and not have it dictate my life as it has been doing.

Lots of things happened while I was 30, I had 2 major operations, 3 IV nerve-block infusions, I had an occipital infusion, I had injections to basically put my reproductive system to sleep to allow my body to heal (I'll write more about this soon). This was the year that we got a new puppy (the beautiful and not-at-all spoiled, Penny), we went on an amazing cruise holiday in the Caribbean - our activities were very limited due to my pain levels, as this was only a few weeks after my last surgery, but we had an absolutely amazing time, and probably the most difficult thing I did while I was 30.... I did this past week..... I went to the DENTIST...!!!

We had booked this cruise holiday back in January 2013, and it felt like it was never going to come round. Of course, having surgery six weeks before our departure date did put a spanner in the works, and we were sure I wouldn't be cleared to go.... but thanks to my amazing GP and an insane amount of medication (I don't know how I got through airport security), I was cleared to go, equipped with a detailed letter clearly outlining my medical information and current situation - should I need to receive medical attention while we were away. Thankfully, this didn't become necessary and just getting away from everything for a bit really was exactly what we both needed.

This holiday was significant for us in another way, it meant that we would be docked at the beautiful port of Belize on the 6th of November, exactly 5 years after we lost Noah. This had crossed my mind when I returned from the UK in August, and I wanted to make it special for both of us, but I also wanted to make sure that this was a turning point for us.... Of course then I had emergency surgery, and I actually completely forgot about what I had arranged.

On the morning of the 6th of November, we got off the ship and had a lovely few hours in Belize. Even though it was well above 30 degrees and the sun was blazing, there was an unseen dark cloud surrounding us, neither of us needed to vocalise it - we just knew what the other was feeling, memories of that day five years earlier are etched in our minds and we can easily recall that day, minute by minute as if it were yesterday. Knowing that I needed a distraction, but also wanting to do something special, Patrick took me to a jewellery store and got me the most beautiful diamond and blue tourmaline ring. It is beautiful, it is precious and I will treasure it forever. It is the most beautiful ring I have ever seen and it means the world to me, not only because of the connection it now has with Noah, but because of the thought and sentiment behind Patrick buying it for me.

We got back to the ship a little after 4pm - it took a little longer to get back, as I had to stop every few feet to admire the amazing sparkle off of my new ring as the sun bounced off of it. The sun easily hit this ring, as that dark cloud had lifted just enough to let the light in.
We went straight back to our stateroom when we got back on the ship, and there waiting for us... was what I had arranged back in August. It was as much a surprise for me as I had genuinely completely forgotten about it. It was a gift from Noah... chocolate covered strawberries and a bottle of champagne... accompanied by a simple note that read 'It's Time to Smile xx'

... And smile, we did. Patrick was astounded that I had managed to organise this without his knowledge, as we hadn't been apart for the entire holiday. I noticed his eyes welling up as he considered the sentiment behind this gesture, not only the memory of Noah, but also what this gesture signified. He has waited a long, long time for me to reach a point where I could feel that it is time to smile again, and in a way, even though I had organised this myself.... it truly felt to us like Noah was giving us permission to smile again. He was giving us permission to let go of the grief and sadness and to move on with our lives. We will never forget, and it will never be easy. Significant dates will always be difficult, but maybe, just maybe.. we will remember to find a reason to smile no matter how difficult those days become.

I mentioned earlier about going to the Dentist this past week. I know this is a routine thing for most people, but I have the most horrendous fear of Dentists. I hadn't been in 9 years, but I made myself go last Saturday (I had some help with this, and in all honesty, there is no way I would have gone if it hadn't been for a little push from some of my friends). I was in such a state, I was in tears just entering the Surgery. The Dentist and the hygienist were just lovely and put me right at ease. They talked me through everything and made me feel like I had total control. If I wanted them to stop at any point, all I had to do was raise my right hand. They did a routine examination, and a scale and polish. I was feeling super proud of myself for going through with the appointment... but then they told me that I would have to return for three fillings, and would have to be admitted to hospital in the New Year to have two of my wisdom teeth surgically removed. I went yesterday to have the first of three fillings. I have honestly never felt fear like that in my life. He put gel on my gums to make the needle less painful, and I was freaking out just at the gel part. I wasn't worried about the needle, they don't bother me, but I really cannot pinpoint the actual root of my fear. I was ready to leave at that point, I was panicky and just did not want to be there. That Dentist is an absolute genius, because he somehow managed to calm me down enough for me to give it another go. As soon as I felt the needle enter my gum, I found myself in a very familiar situation. I found myself forcing my mind to detach from my body, and suddenly I was somewhere else. I was aware of the drills and whatever else he was using to work on my tooth, but I was okay. I wasn't even there. This is an escape mechanism that I perfected during the many, many painful procedures I endured while going through IVF. I could detach from my body and put myself in an environment where I was safe and comfortable. This is why I often describe those procedures as if I was standing there watching them happen to somebody else. 

I left there feeling so much more confident, but also extremely proud of myself. I had accomplished something that I had been putting off for so long. I have to go back on Saturday for 2 more fillings, so I hope I'm feeling as confident going in on Saturday morning...!!!

A lot of things happened while I was 30, the most significant thing being my heart stopping for 24 seconds. This has definitely been the most defining and clarifying occurrence  of the last 12 months... if not, the last 31 years. It's made me appreciate life and just how delicate life is. It's woken me up to just how much my body can take, and I truly see this as a warning from my body that it just cannot take anymore. People keep asking me if I saw a light or anything like that when my heart stopped.... the answer is that I did not see a light when my heart stopped... it was when I woke up and realised what had happened, that I saw the light. 

I did a lot while I was 30, but there was one thing that I forgot to do..... I forgot to live.

I will not be making that mistake again xx

Wednesday, October 15, 2014

Wave Of Light 2014

I have so many things to write about, but I need to get my head around them first - before I can put them into words.

For now though, Here is our contribution to this year's Wave Of Light. One candle lighting for each of our babies.

October 15th: International Infant and Pregnancy Loss Awareness Day.

All around the world, parents light candles for their angel babies at 7pm. Its a small gesture, but it means so much to us, and seeing social networks filling up with pictures of burning candles for all of those precious angel babies - is the ultimate reminder that we are not alone.

A simple, but profound way to connect strangers worldwide in heartbreaking solidarity.


Tuesday, September 9, 2014

Lucky To Be Here...

Three weeks ago, as I drove home from an appointment with Gordon in Cork... I got the most horrible pain in my left side, a ripping pain... a familiar pain, a pain that made my heart sink. I knew that pain only too well, it was the pain of an ovarian cyst rupturing, and in my experience.. anytime I have experienced this pain in the past, it has been followed by emergency surgery. I did not want to have more surgery, in fact... I was prepared to avoid having more surgery at all costs.

I managed to get home, the pain settled after a few hours and while it never went away, it never got any worse. So in my mind, I figured maybe its just going to clear up on its own. 
I went to work as normal the next two days, and couldn't understand the puzzled looks I was getting. I think I was oblivious to the pain I was in, power of the mind or something like that, but apparently it was very very obvious to all around me that there was something wrong, and I needed to be getting some medical attention.

I continued as I was for two more days... until midnight on the Saturday. I was home alone as Patrick's band was playing at a wedding and he wouldn't be home til after 3am. It was around midnight when I felt the pain ripping up through my side and I fought it til Patrick came home. I took some painkillers and fell asleep for a few hours. I woke up just after 6am and it was only at that point that I knew I needed to get some help. Even still, I figured I'd call the Caredoc and they'd put me on some antibiotics and I'd be fine in a few days.

I did call the Caredoc, who immediately sent an ambulance. I felt it was a bit 'overkill', but it wasn't long before I was proven very very wrong. The ambulance arrived and I walked out and got into the back and lay on the stretcher. The pain was bad, very bad, but another problem quickly became evident. My blood pressure was very very low, but my heart rate was very very high. This meant that they could not give me any painkillers. The paramedic arranged for an advanced paramedic to meet us en route. He was unable to get an IV line in, as my veins are so bad, So they decided the best course of action was to try some gas and air, and to get to the hospital as quickly as possible.
I struggled with taking the gas and air, I wasn't able to take really deep breaths because the pain was too bad. I managed to get the hang of the breathing and was experiencing some relief from the pain.
Suddenly I felt myself losing consciousness, it felt exactly like being put asleep before an operation. I was out for a few seconds and as I was coming round, I could hear the paramedic talking to me, but it seemed like he was really really far away. I couldn't comprehend what he was saying. It was all very very confusing.

So... we arrived at the hospital and I told the Dr. that I was 99% certain that I had a ruptured cyst. They admitted me and registered me under a gynae team. They put me on 8 hourly pethidine injections, and that really helped with the pain. The following day (Monday), they did an ultrasound scan and decided that it was not a gynae problem and I was passed over to a surgical team. The next day, they did a colonoscopy - which also came back clear. They were supposed to do a CT scan the next day, but due to some processing issues, it didn't happen til the Thursday. The CT scan also came back clear. The Consultant instructed me to fast from midnight and they would decide on a course of action the following morning. 

In my heart, I knew this meant surgery. I really did not want more surgery. The surgical consultant came to see me early on Friday morning, and said the words that I did not want to hear 'We need to operate'. I understood, I didn't know how I was feeling, but I understood. I called Patrick and he came to the hospital as quickly as he could. I had to wait a few hours but I was doing ok. In my heart I knew that I was right. I knew it was a ruptured cyst, and I knew that it would just be a routine operation, nothing to worry about. I wasn't really a ball of nerves like I usually am, I really just wanted to get the pain sorted. Even as they wheeled me down to theatre, I was okay. Patrick kissed me and I said 'see ya later', I really was okay, I wasn't worried... it was just routine.

So... I was wrong about that too. It turned out that there was nothing routine about this operation. I was correct about the ruptured cyst... except it wasn't just 'a' ruptured cyst... it was 6 ruptured cysts, my appendix was infected and needed to be removed, they found endometriosis that needed to be burned, and again... both ovaries needed to be burned and drilled. Both the surgical consultant and the gynae consultant were operating on me at the same time.... and then..... then my heart arrested for 24 seconds, and I had to be resuscitated. What should have been a routine 90 minute operation, became a four hour battle in theatre. I was intubated for seven hours and spent that evening in the special care unit. I returned to the ward early the following morning, and was greeted with lots and lots of messages on my phone, very very worried messages from friends who had expected to hear from me immediately after the operation. The next concern was that there was an outbreak of the Norovirus in the hospital, in fact - the ward I was in was currently the only room in the whole hospital that didn't have the virus. I was faced with a decision... do I stay in the hospital for a few days to rest and recover a bit before going home, while risking contracting the Norovirus which would be detrimental to my recovery, or do I go home even though it is way too soon after surgery, but at least I'd be safe from the virus. I decided to go home, and every day since then I have asked myself if I made the right decision.

I was okay for the first few days. Sure, I was in pain and very sore and stiff, but once the anaesthetic really wore off... Good Grief, I genuinely felt like I had been hit by a double-decker bus. Every part of my body actually hurt, it was all so painful. Six days after getting home, Penny jumped on my stomach and burst the stitches in the wound that goes right through my belly-button. The surgeon had told me to be very careful with that wound. It wasn't very secure. The same wound has just been opened and stitched too many times, that the skin just cannot be stitched anymore. This meant a trip to the Caredoc on Friday night, who cleaned the wound and packed it really tight in the hope of stopping the bleeding/seeping. She told me that the wound was infected and prescribed some antibiotics. Unfortunately, the wound has continued to bleed and seep. We have been cleaning it and changing the bandages every few hours in the hope that we can get it to heal. It seems that is all we can do, as it just cannot be stitched. 

The following morning I woke up at 4am with the most horrific pain in both of my sides. It felt tight, compressed and I couldn't move. I called Patrick and he came downstairs. We managed to get me into a position where the pain was manageable, but it seemed to me that I was getting worse, rather than better. It turns out that sometimes the ovaries can 'sleep' during anaesthetics, and it can take them a while to wake up, but once they do... you are going to feel them. Anything to do with the ovaries is extremely painful and takes a long time to heal. I remember the ovary pain from the previous times that I have had them burned and drilled, but I don't remember the pain coming on a few days after the operation.

I'm struggling a lot with this recovery. It's been 9 days since the operation, and I am still in a huge amount of pain. Moving hurts. My right side is in absolute bits. The wound in my belly-button is still seeping, but we're keeping on top of it. I am getting a lot of rest and doing what I need to do for myself right now. The fact that I had to have yet more surgery has come as a huge shock, but the realisation of what happened during that operation has scared the life out of me. It has shaken me so badly, and it has shaken everyone that knows me. This is the biggest operation that I have ever had, and yes, it has taken eleven operations for me to realise that I need to put myself first.

So many of my friends have called and messaged over the last 9 days, wanting to visit, and while I hated doing it - I had to tell each and every one of them that I just wasn't able for visitors just yet, I needed another week or so to get myself feeling a bit more human. Every time that I have had surgery in the past, I had visitors straight away and didn't really give myself those initial few days to allow my body to rest. I realised the importance of allowing my body to rest, this time, but aside from that, I just wasn't in a place where I wanted to see people, or maybe that I didn't want them to see me. My body has been through a huge amount of trauma, and for the first time in my life.... I realise just how lucky I am to be here.

Sunday, August 17, 2014

Maybe It's Time.......

I've found myself fighting tears a lot lately. We've been doing some redecorating at work, starting with our Baby Room, and it was 'time' for me to do something I felt like I needed to do a long time ago, and tried several times... but I could never bring myself to actually do it..... Until now...

This is one of the walls in the newly redecorated Baby Room, and the question I have been asked so many times in the past two weeks is 'Where did you get that border, it's beautiful?' It is beautiful and it is perfect and it is more special to me than anyone could ever even imagine.

You see.... I found that border in a magazine and I spent days trying of find somewhere in the country that stocked it. I came up blank, but I did find a shop that would order it in especially for me... and so that's what we did. That border was ordered back in the Summer of 2010, right before we started our first IVF cycle.... and it has sat in a drawer in the kitchen ever since.

To me, that border was the epitome of perfection, it was exactly what I wanted in the nursery for my son or daughter that was sure to arrive nine months after we started that first cycle... What could possibly go wrong...???

I suppose a more accurate question would be 'What wouldn't go wrong?'... and we all know that the answer to that is 'Absolutely Nothing'. Anything that could go wrong, did go wrong and here I stood 4 years, 7 pregnancies and 10 angel babies later... looking at that border every time I opened that drawer in the kitchen and every time I did, that knife twisted in my heart and I realised that I am no longer that enthusiastic 26 year old, I am no longer that woman who has suffered a miscarriage and an ectopic pregnancy, but was willing to place herself in the hands of the Fertility Doctors... because they assured her that they could help her to get pregnant and stay pregnant, they could make sure that there was a beautiful baby to place in that beautiful nursery room with that perfect border. I am no longer that person who can remove myself from my body and stand by and watch as I push myself further and further into the oblivion that is Fertility Treatment, completely regardless of what it was doing to me.... I was only the vessel.... the carrier... it was my future baby that was the only important person, and it didn't matter what I had to go through for that baby, I would do it.... and it didn't matter what anyone said to me... it didn't matter that my oldest brother pleaded to me down the phone after yet another surgery, to 'please stop this, this is going to kill you', It didn't matter that Patrick told me of his concerns that 'maybe someday you won't wake up from an operation', it didn't matter that my friends asked me 'what is it going to take to get you to stop this?', To which I always responded 'I will have a baby, or die trying'..... None of this mattered to me.... the only thing that mattered was the future baby that I would have to place in that beautiful nursery with the perfect border... nothing else mattered... I didn't matter. 

And so... I finally discovered the strength to part with that notion of my beautiful nursery with the perfect border, and instead decided that maybe I could share that idea with all of the fantastic people who place their babies in my care every single day. 

That border has been up in the Baby Room for about two weeks now and I find myself going in there and feeling very comforted. Everyone comments that it is 'just perfect' and that it is now a 'beautiful nursery'... and it is, it is a beautiful nursery room with a perfect border and the only difference is that it can now be enjoyed by lots of different babies, instead of just one. 

I spent the past 3 days in the UK for some University things, and I got to spend some time with some very special friends. While I was over there, even though I was on a fairly tight schedule - I realised that I was having a really good time, I was having fun, I was enjoying myself, I wasn't stressed... (well, apart from a minor meltdown because I couldn't figure out the underground system on my own). While I was there, I was just 'Anne-Marie', and I was happy to just be 'Anne-Marie'. I didn't have the daily reminders of everything that I have been through and everything that I have lost. 

On Friday evening after dinner, I had a bit of a heart-to-heart with one of my friends about this and what surprises me is that I could open up and talk about it, I could vocalise what has been going on in my head for months but what I haven't wanted to say out loud because it scared me too much to hear it. For the first time, I could hear how ridiculous it sounds to go to the Czech Republic and put myself through absolute hell all over again... based on the hope of a 1% chance that my embryos might be viable enough to get past the first trimester. 1% - that's what we're talking about here.... 1%. 

For the first time, I could see what I've put myself through... I could see what I was and what this has done to me. Being removed from my 'situation' with a little distance, I could see what everyone else sees... and for the first time ever, I could talk about this without breaking down in floods of tears. This friend who I adore and for whom I have so much respect, took my hand and said' Anne-Marie, maybe it's time you started to live your life', and as I sit here and type this blog post, fighting to see the keys through floods of tears... I have to admit that maybe I agree.

Patrick and I had a long conversation about this, this morning, and I could see as I spoke to him about what I was feeling that I was just reiterating to him what he had been feeling all along, but needed me to come to that realisation for myself. Maybe it's time that we stop putting our lives on hold for this anymore, maybe it's time that we start making plans for more than 3 months into the future, instead of  being afraid to do that in case that is the time that we are ready to go ahead with more treatment. Maybe it's time that we start to do the things that we have always wanted to do, but haven't 'just in case', maybe it's time when it's ok for me to decide I want to drink coffee (I haven't had coffee in years), or I want to go out and get hammered with my friends every so often, maybe it's time for me to let my hair down and have some fun and not be afraid that everything I do is going to have some adverse effect on my future pregnancy. Maybe it's time for me to start running again, dancing again, singing again.....

Maybe it's time for me to just be 'Anne-Marie' again.......

Wednesday, July 16, 2014

"It's Okay To Be Okay"

I had a visit with Gordon today, it was a really nice session - we talked a lot. It felt like it had been ages since I'd been there, but really it was only a few weeks.... I had to cancel my last appointment coz I dropped my beautiful MacBook Pro on my left foot, the edge of it landed right along the line where my toes meet my foot. It's been extremely painful and I've been on crutches and unable to drive. It does seem to be improving a bit now though, so fingers crossed I'll be able to manage without the crutches in the next few days.

This was the first time in quite a while that we have talked about returning to IVF and that kind of thing. I told Gordon that my head was so messed up about it and as the time increases since our last IVF treatments - I'm finding myself getting more and more comfortable with the idea of not going back for more treatment. I told him that it feels so wrong to be feeling that way, especially as I have always said that if there is even a 1% chance that it could work, then nothing would stop me. It's just not sitting right with me at all that I am starting to feel this way.

Gordon's response completely stopped me in my tracks, it interrupted my train of thought and made me re-evaluate how I have been feeling.

Gordon said "Anne-Marie, it's okay to be okay"

He reminded me of how the past 5 years have been for me, he talked about how IVF has completely controlled my life, he recalled everything that I have been through because of IVF, he talked about what I am still going through because of IVF... He told me that the fact that I have spent so long wanting to rush straight back into all of that, just wasn't healthy for me. He said that I needed to get to a place within myself where I can just be okay and not have everything revolve around IVF, and he said that he was really happy that I seemed to be achieving that level of 'being' now.

Gordon talked about how sometimes we just need to slow down, and when we are unable to do that for ourselves... Life can make us slow down - whether we want to, or not. I guess life is kinda making me slow down (or trying to, at least). Apart from the ongoing nerve pain I've been having in my lower left abdomen, for the past 6 weeks I have been experiencing horrible attacks of cluster headaches. They are like really really intense migraines that are concentrated around my left eye, causing it to weep and swell. They also travel down the back of the left side of my head and into my neck and shoulder. These cluster headaches are occurring almost daily, sometimes several times a day and are extremely debilitating. I mentioned these headaches to my Pain Specialist during the review appointment after the last Infusion, and he suggested that we can try a procedure called an 'Occipital Nerve Block', this basically involves injecting a series of anaesthetics and steroids directly into the nerves that cause the pain (in the back of my head), in order to numb or 'block' that nerve and reduce the levels of pain that I am feeling during these attacks. If this is successful, it could achieve an end to this attack of Cluster headaches (they tend to be seasonal, so could return around the same time next year), or at the very least - reduced levels of pain for a number of weeks.

I am scheduled to have my first Occipital Nerve Block this coming Friday morning,  followed immediately by my third Nerve Block Infusion. After the horrid experience I had last time, my Pain Specialist has agreed to keep the levels of Ketamine the same as last time (to hopefully keep the hallucinations to a minimum), increase the levels of Lidocaine (for increased pain relief), and double the levels of Propofol (so that I will fall asleep much more quickly). I'm expecting to be pretty sick and out-of-it for the weekend, but hopefully after 2-3 days, I will be feeling a whole lot better.

So, with an injured foot on top of all of that going on... maybe Gordon is right. Maybe I do need to slow down a bit.... and now that I am starting to notice that I can be okay.... maybe, just maybe I can work towards being okay to be okay... and if he's right about all of that.... maybe he is right that I will just know when I am ready to go back for more treatment, but not before I am just okay for a while.xx.

Wednesday, July 9, 2014

Friendship is........

One year ago yesterday, I sat in Gordon's Clinic. I wasn't able to concentrate, I was barely able to speak. I was waiting for news and I truly wasn't sure how I was going to react when I got it.
You see... my best friend (and colleague) had gone into hospital that morning to have her baby. She was having a C-section, so I knew that at some point that morning I would get a message, probably a picture... what I didn't know was how that was going to affect me. I didn't know what my reaction would be. 

The message finally came. it read 'Baby Eimear arrived at 10:14 weighing 6lbs 12ox. xx', accompanied by a picture of this beautiful little being, minutes old. 

I cried..... I don't fully know why I was crying, but gosh did I cry. I was so happy for my friend, she'd had a tough pregnancy and I was conscious that I had somewhat distanced myself from her pregnancy, even though we never spoke about it.... I know she was also conscious of not flashing her pregnancy in my face. There were times over the previous few months when I'd felt like the crappiest friend ever, times when she'd been admitted to hospital and she didn't even tell me until afterwards. It was only a few weeks ago that she even told me about the difficult time she had when she was having Eimear.

Infertility controls your life to such an extent, that not only can you not have your own experiences to enjoy.... it doesn't let you enjoy other people's experiences either... and then there's the whole aspect of how it affects other people. I know how uneasy she was about breaking the news to me that we had to cancel our overnight shopping trip because she was pregnant, I know how difficult it was for her to conveniently 'forget' to bring her scan pictures to work, I know what was going through her mind when she changed the settings on her Facebook page so that her scan pictures would not show up on my newsfeed.  She was pregnant, she was about to bring new life into the world, she was having a difficult pregnancy... she did not need the added pressure of having to protect me from her pregnancy.

I think part of the reason I was crying was pure relief. She could just be my 'friend' again, she no longer had to be my 'pregnant friend'. I think I had built up the anticipation of this moment for so long, so many times I had imagined getting that message and each time I had imagined myself reacting differently... I think I was so relieved that it had finally happened... baby Eimear had arrived safely, she was healthy and happy, my friend was doing well, all was going fine.... and I think I was relieved that on some level, I actually was okay.

Eimear was 9 days old when I got to see her, my friend simply messaged me that morning telling me that she had no visitors that day and Eimear wanted a cuddle. I drove to her house, an absolute ball of anxiety about how I was going to handle this.... but once I got there and she placed Eimear in my arms... none of it mattered anymore, she was perfect, it was all perfect and it was at that point that I knew that I could be okay and that everything was going to be okay.

I left my friend's house that day and I was proud of myself, I was so proud of myself, but also, I was proud of my friend. It had been difficult from both sides, but we got through it, and that's testament to her as a person, and the strength of our friendship.

Gordon asked me why this particular pregnancy had affected me so much, I've had lots of friends and family members who have had babies..... and I refused to answer him, I asked him please not to push me on this. He was surprised as I don't think I have ever asked him not to push a topic before, I usually completely trust him and am happy to go along with however he wants the sessions to progress. 
A few weeks later, I showed him that picture and he told me he was so proud of me. He then asked 'Can you tell me now?' I shook my head, and the subject has never been brought up again.

I can tell you now... the disaster that was the 'double transfer - ectopic pregnancy - emergency surgery - chemotherapy' fiasco... involved the transfer of 2 beautiful embryos, one day 5 blastocyst and one day 6 blastocyst. The resulting due dates for those babies was the 8th and 9th of July. That whole episode was quite honestly, the absolute lowest point in my life, and I've tried so hard to recover from that. I've tried to block it out as much as I can, and I promised myself that those dates now belong to my friend and the beautiful Eimear and I'm not gona let that date affect me anymore.

Yeah... you'd think I'd have learned by now that things don't quite work that way. I knew that I needed some time to myself yesterday evening, I knew that I had some crying to do and I really just wanted to be alone. I thought I was doing ok, when I got a Skype call from a very close friend of mine in the UK. As soon as I answered the call I was asked 'what's wrong?', I brushed it off as just having a bad day and tried to move forward with the conversation. This friend however, wasn't going to leave it at that. Again I said that I was just having a bad day and I wasn't able to talk about it, but I'd explain everything tomorrow. Still, it wasn't going to be let lie at that and eventually I just said that my best friend's daughter had her first birthday today, and it was just making me think about stuff.

Ok... so UK friend, knowing that I'd been trying recently to detach from external 'pregnancy related' stimulants, and had been telling myself repeatedly that 'this actually doesn't affect me', when I'd see pregnant women in the supermarket or wherever, and I seemed to be doing well with this approach.

UK friend responds with "You know, you've really got to find a way to stop letting what is happening to other people, affect you so much"... Well, I suppose I need to both apologise to, and thank this friend... because that comment sent me into a 20 minute crying rant of everything that was going on in my head and in my heart, and while it was said in terms of 'I can't believe you just said that to me', before I realised what was happening, I had divulged everything about those dates and why it was so hard for me. 

I lay awake for most of the night, not being able to turn off my head and my thoughts, and kinda feeling embarrassed about getting so upset and externalising my connection to those dates without really meaning to. It's funny how something becomes so real as soon as you say it out loud, and I was annoyed with myself for saying it out loud. I was annoyed that I couldn't just deal with it internally like I had planned, I was annoyed that I had reacted to that comment in the way that I did...but... I am a firm believer that everything happens for a reason, and after allowing my thoughts to settle for a bit - I realised that there is actually no reason for me to keep that a secret, and maybe reacting like that was just what I needed to do.

So... I'm sorry I took your head off, but when it grows back... I'll thank you for being you and saying exactly what you were thinking, because otherwise it may have been another year or two before I actually faced up to the reality of this.

Life is hard, really hard at times and there will always be good days and bad days, the thing I still struggle with (yes, even after all of this time) is that I don't have to go through my bad days alone, I don't have to shut myself off, I don't have to lock myself in the bedroom when I feel like I'm going to break down and I need to cry. I have friends, I have the best friends in the world. I have friends who will shelter me from their worries, who will think of me and how things affect me even though they are going through so much themselves, I have friends who will let me rant at them for 20 minutes simply because they know I need to and will then apologise for upsetting me, even though I was completely out of line. 

I do not have a lot of people that I call my 'friend', but to the two that I have spoken about in this post...

Thank you for being my friend xx 

(Oh... and Happy Birthday Eimear xx)

Saturday, June 21, 2014

A Lot Has Happened........

I haven't posted in a while. I've thought about posting a lot but lots of things have happened in the past two months and I kinda started to feel like I don't know where to start with a new post. 

I thought about posting the day I brought that quilt down to Gordon's Clinic and he was just speechless, when he found his words - he told me that he knew what this meant to me and what it will mean to the other women and couples who attend his Clinic. He told me that I can have it back anytime that I want because he knows how much of myself I put into that, and I responded by telling him that I might ask for it, but I will never ask for it back. I told him that there will be days that I will need to know that this quilt is there and there will be days that I need to sit and hold that quilt and probably cry my eyes out. That's the thing about this journey (and probably any difficult journey), there will always be 'days'... days when you are good, days when you are not so good, days when you want to physically injure the person sitting across from you in the restaurant coz he is breathing too loudly, days when you want to be left alone to curl up in a ball or just be with your thoughts and memories, days when you want to be surrounded by people, days when you need to talk about what you are going through and days when you don't want to talk to anyone.  Gordon has gotten pretty good at knowing what kind of day I'm having without me actually having to tell him. He can tell a lot from the tone of my emails (I know that sounds like I email him every day.... I really really don't, but I'm sure at times it certainly feels like I do, to him...!!!), or from how I greet him when he opens the door for me at his Clinic, so I don't doubt that someday will be the 'day' that I need to see that quilt and hold it and feel it. Probably some day when I feel like hope has abandoned me and I will need to be reminded and re-inspired by the amount of hope that has gone into that quilt... when it was being made, but also since it has been at Aculife Clinic. 
Gordon emailed me that evening to tell me that the response to the quilt at his Clinic was just amazing. He was showing it to his clients and many had actually asked to see it as they had read my blog post. He said the one resounding response from almost every woman who saw it, was "Some day I want my star to be on that quilt". They were all asking if they could have a star on the quilt when their baby finally arrives. You have to imagine that every woman who attends Aculife Clinic has a story, a journey, they have all had a difficult time trying to get pregnant or trying to stay pregnant, they all have the one same dream to hold their own baby in their arms, and if my quilt has given them the hope, strength and determination for 'if' to become 'when', even for one second.... then that makes me very very happy and I know I did the right thing. Of course the answer is 'yes', Every Aculife baby can and will have a star on that quilt.

I also thought about posting when I was referred to a pain specialist because the pain in my left side just would not ease or settle down at all, since the surgery last December. The Pain specialist believes that my pain is caused by a combination of 2 things. The first being that the nerves in my lower left abdominal area are just so badly damaged from being operated on so many times - that they just do not know how to stop hurting. He likened it to an amputee who continues to feel pain in their limb even though it is no longer there. The nerves just do not know how to stop hurting. 
The second reason is down to adhesions. Every time you are opened up and your insides are exposed to air, this creates a sticky substance that joins organs together. So, for example, if I have an adhesion joining my bowel to my ovary... every time food passes through my bowel, as my bowel contracts - it pulls on the adhesion, which in turn pulls on my ovary and this entire process causes a lot of pain.
So we got to talking about solutions or indeed, options. The only option for the adhesions is surgery, and as far as I'm concerned that is not an option right now or anytime in the foreseeable future.
There are a few options to try and help the nerve pain, but the one we decided to try was a series of nerve block infusions. This is basically an infusion of three different anaesthetic drugs - Ketamine, Lignocaine and Propofol. To date, I have had 2 of these infusions. The first was a very funny experience. The doses used were low and basically I was just laying on a bed with a needle in my arm, having a mixture of these drugs pumped into me. I felt nothing for about 10 minutes, but the nurse had warned me that it can kinda creep up on you. When the ten minute mark hit, suddenly I felt the walls and the ceiling closing in on me. I really didn't like that, I'm very claustrophobic. Then out of nowhere, my hallucinations came in the form of hedgehogs crawling all over me, and every time the blood-pressure cuff would tighten, I was convinced that it was hedgehogs biting me. Ok.... I didn't say it was a funny experience for me... but it was for everyone else. Apparently I told the anaesthetist that I was going to recommend him to all of my friends, and I demanded pizza off of the poor nurse who was getting me tea and toast in the recovery room... and when I got home, I practically attacked Patrick and my brother Liam because they wouldn't stop asking me questions while I was trying to sleep and they kept laughing at me..... well, it turns out they weren't actually asking me questions and were laughing at the fact that I was going mental at them because I was imagining that they were asking me questions. I got two days proper relief from the pain in my side after this infusion, and definitely a decreased awareness of the pain for a few weeks afterwards. I did have a pain in my head for the first day after the infusion, but that passed quickly.
The second infusion was a completely different story. The doses were a lot higher. I had brought my music and headphones in with me as a means of distracting myself from what was going on around me. I was kinda surprised as the Pain Specialist told me if I was planing on using them, I better do it at that point, as he was connecting up the syringe. I quickly found out why he told me that. Within minutes, I had lost all use of my hands, feet, legs and arms. I had no feeling in them, I couldn't move my head or my neck. I was completely paralysed. I couldn't speak. As the drugs flowed into my system, I began to hallucinate again... except this time it wasn't hedgehogs..... this time it was babies.... 10 beautiful babies around my bed. Nine little boys and one little girl... and she was beautiful, I was fixated on her. She had her hair in pigtails and she was just the most perfect, precious little thing. I can see her now, as clear as anything. In that moment, I was so thankful for this experience, In my drug induced state, I felt like I had been given a moment with my babies, something that I never got to have, and I was so so thankful for it. It was short lived though as suddenly, one by one... each of my babies was taken away and I knew that I would never see them again. I began to cry... except crying when you are paralysed is pretty much just tears running down your face. I cried and cried and cried and eventually I must have dozed off, I have no idea what I may have said to the Dr. as I was coming round and the meds were wearing off, or even if I said anything to him, it may have been because my face was tear-stained and it was very obvious that I had been crying, but he placed his hand on my left shoulder and just gently squeezed. It was a lovely gesture and I genuinely think that he knew that this infusion had been really tough for me.
After this infusion was tough also.... not least because everyone was expecting funny stories like the previous time :-), but I was in a zombie-like state for a few days, I couldn't shake off what I had just experienced, I couldn't get the image of those babies and particularly that little baby girl out of my head, I genuinely felt like I had just lost them all over again. It was tough, it was very tough.
That infusion was three weeks ago and for the majority of that time, I have been suffering with horrible attacks of cluster-headaches (they're like migraines, but more intense and can attack up to 11 times a day). I don't know if there is a connection between the infusion and this attack, as I have had an attack of cluster headaches once before, but I'm meeting with the Pain Specialist next Tuesday to discuss it and see where we go from here.

I thought about posting after Patrick's sister-in-law (and one of my truly closest friends) was in a horrific car accident 4 weeks ago. All of our lives changed in a split second, and for a few days we really didn't know if we would ever see her again. Thankfully, she is a fighter and has made fantastic progress. She is home and doing great. She has a long road of recovery ahead of her, but how it so easily could have been so different. This made me so thankful for what I do have and made me conscious of the things that really matter and those that really really don't. I'm a real worrier, but this has given me the realisation that life is so precious and can be changed permanently or taken away in a split second - do we really have time to be worrying needlessly..???

A lot has happened in a relatively short space of time, and I'm glad that I have now posted abut all the things I thought of posting about, but now let me tell you about the thing that triggered me posting this morning at all.....

I was doing some early morning browsing on Facebook, when I came across this. Initially it just made me mad. Hundreds/thousands of babies being abandoned because their parents can't afford to keep them... and they can legally just drop their babies off at these hatches, with no process, no procedures.... just abandonment and the knowledge that they will never see their child again... and yet, here we are... desperate to have a child of our own, we could give a child like that such a wonderful life.... but we can't. Why?..... because my BMI is above what is considered 'normal'.
Early last year, we went to an information meeting about Adoption... we just wanted to keep our options open and explore all avenues. Well... the outcome of that was that we would not be able to adopt an Irish child because Patrick was too old. He was 36 at the time, but as the process takes 4 years and he would then be 40, that automatically rules us out as prospective adoptive parents for Irish children. It didn't matter that I was only 29 or what our situation was... that ruled us out immediately. So we looked to International adoption. A few years back, it was a relatively easier process and lots of countries were happily adopting their children out to Irish couples. Until one couple adopted a little boy from Indonesia, but decided to return him to the Indonesian orphanage because they fell pregnant with their own child shortly after. This created havoc among the countries who were previously very willing to work with the Irish parents, and it is now a ridiculously stringent process to adopt internationally... which begins with ruling out anyone who's BMI is above 'normal'.

Things that have happened recently have made me realise that I've spent way too many years being embarrassed or ashamed about the amount of weight I put on while we were going through the IVF process and how I've struggled to shift much of that weight because I have been continuously in so much pain, but I would love someone to explain to me why the number that is produced when you divide my weight by my height is more relevant to my ability to care for a child and give a child a good stable home, and a life that they could only dream of at one of their 'hatches', than my actual ability to do this. For eleven years now, I have studied one aspect of 'Childhood' after another, I have top scoring qualifications and Degrees in Early Childhood Care and Education, Clinical Psychology, Educational Psychology, Developmental Psychology and have recently embarked on another Masters Degree in Paediatrics and Epidemiology for Children's Health.  
Five years ago I developed an Early Years Educare Centre in my home town and it has gone from strength to strength. Patrick began working with me last August and there are times that I have to stand back and just admire how good he is with the children who attend the service. He works primarily in the kitchen and doing maintenance when he gets time, but he has such a natural ability with the children (he tells me it is because he is still a big child himself). I watch him with his nieces and nephews and it is impossible not to notice what a great Dad he would make.

Yet, these things aren't even considered. I can't imagine how difficult it is to be in a position where you feel that you have no choice but to abandon your child at a hatch, knowing that you will never see them again, because you can't afford to give them the care that they need..... but wouldn't you much rather know that your child was going to a loving, caring family than be left in the care of the state indefinitely?

It seems to me the desperation of the parents having to abandon their children, is not terribly different from the desperation of those who would give anything to have a child to call their own, and it also seems to me that there is a very very simple solution to all of this.... 

But hey, I'm fat.... what do I know...???