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..!!!)

.xx.

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