mybloggingadventure-blog

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Living with Spina Bifida

I am twenty seven years old and I have Spina Bifida myleomenigocele. It has recently occurred to me that perhaps my story might be an interesting one to tell! Spina Bifida is a condition that I was born with and has had a pretty big impact on my life. I have had lots of operations and procedures and countless hospital appointments and been admitted many times. I guess as I am trying to tell a story I should probably start at the beginning. ( the details may not be exact as I was a baby for some of it) I was born on the 28th of April 1989 in Waterford City, I was brought to Crumlin children’s hospital within a day of my birth and they operated on the opening on the lower part of my spine, I believe that I spent some time in an incubator and was then allowed home. I met my goals within reasonably normal time frames and went on to talk and walk, walking without aid .. My feet underwent two major operations between the ages of 4-7 to uncurl my toes which were growing on top of one another. There was discussion of removing my baby toes as the doctors believed my chances of walking were slim ( they were wrong!) however my parents were adament not to go ahead, luckily or I might have never walked!! I had several issues with bowel and bladder control throughout my childhood and adolescents as the feeling to use both organs was impaired due to the level of Spina bifida that I have. I however have been very lucky and through the following surgeries I now have a relatively normal use of my organs. The first bladder operation that I recall was one to create a “stoma” which was a large hole just below the bellybutton which fed a tube from the bladder through the “stoma” to a bag that was strapped to my leg to collect the urine which my body produced, this however came with its own set of problems. I was a child that loved to swim and any time that my family went on holidays I would always be in the pool! I managed to disguise my “accessory” by removing the bag and using a plug to cork the tube, which I could then hide inside my swimsuit and in turn I would be able to swim, however due to excessively exposing my open stoma to the chlorinated water I developed large orange sized fungus inside my stoma which were very painful and had to be surgically removed twice over the course of 4-5 years. It was with great joy and a lot of pushing from my parents that I was approved for a life changing double operation when I was 12/13 years old. These procedures were called the ACE procedure ( Antegrade Continence Enema) which is a procedure which enlarged my smaller than normal bowel, this was done in conjunction with the bladder augmentation which involved removing a part of my large intestine to fashion a larger bladder, this meant that instead of having a large, unsightly and painful stoma I would be able to live a more “normal” life. This was the best and most life changing operation I ever had. Within a matter of weeks I had a new found confidence, I could walk straighter then ever before and I didn’t have a huge hole in my stomach. I was coming in to my teenage years and I wanted to be able to wear a bikini and was hopeful that someday I would have a relationship. After that operation my life really began. I started being more social and going out more. It wasn’t a flawless procedure, I had many bumps along the way. It took a while to get the balance right for the medical devices that I need to use. I had a few issues with my feet, we had many orthotics made, tried, used and eventually disgarded, I know that the specialists that had to deal with me when it came to footwear hated me as all I wanted was to wear “nice shoes” and not let anything look “strange”. I was a diva :/ but all I wanted was to be as normal as I could be, from age fifteen to twentyish was fairly uneventful healthwise. I finished school, got a job, had a long term relationship,everything was great!! I had a few little blips but nothing terrible. Then in 2011 - I lost the power in my legs. The hospital did many tests and LP’s but they couldn’t figure out what was wrong. I subsequently ended up in a rehabilitation centre for 5 weeks where I had to learn how to walk again,several months of physio later and i was back to my version of normal :) I was referred to the national rehabilitation centre which gave my family and I some possible answers. They discovered that my lower vertebrae are very close together and have trapped some nerve endings which could have caused the loss of power, I was given daily exercises to do and I have regular appointments to keep an eye on my spine. A year later I collapsed with severe headaches and this happened twice. The doctors completed more tests, MRI, CT, LP’s, bloods, everything came back normal. They thought that perhaps it was a virus that was attacking my system but unfortunately I received no confirmed diagnosis. Sometimes living with a condition like Spina Bifida can throw you curve balls. December 2013 I was volunteering for a local winter festival in the office answering calls when I had an unfortunate incident. I burnt my ankle on a radiator… Sounds strange I know!! but one of the effects that Spina bifida has on me is reduced feeling in certain areas of my legs… My ankle was resting on a radiator which I thought was off and I managed to get a third degree burn to my ankle. The only perk being the almost completed lack of pain!! I didn’t feel it happening but during various parts of the healing process it did hurt. I spent many weeks in a wheelchair and going up and down to St James in Dublin for treatment and eventually a skin graft. My sister is my rock and has been there through every step especially in the last 5 years since our mum had become sick, she came with me to each appointment. I am now left with another scar from the burn but it’ s just one to add to the collection :p

These days my health is good , I have a couple of very hyper/happy dogs and life is good! I am currently single and have fantastic friends and family. There are times in my life when I forget about my condition, because my quality of life is so good!! I’ve had a few operations in my short 27 years and no doubt as medical advances occur I will have some more but the future is looking very bright and long. I hope some day to have children and although the chances of my children having Spina bifida too are high enough, I would hope that they are healthy.. If I was to have a child with Spina bifida I would know what to expect but if I had a child that didn’t have the condition it would be nice as I know how hard if can be to have to live with some of the side effects :)

I am very lucky! I happen to be able to walk, talk and take care of myself. Many forms of Spina bifida mean that the person that has it may have to undergo many more operations and their mobility is affected more so then how it affects me.

I hope you enjoyed reading my blog! There is so much more to say but I will leave it there for now :)

[mybloggingadventure-blog]

Automated tills

Many supermarkets have implemented automatic tills in order to improve efficiency, by making the process faster improving customer experience. In my experience the process leaves a lot to be desired, alot of the time it takes longer to go through the automated till because it is stuck with error messages or needs approval for specific items. The stores need staff to man the tills which in my mind completely negates the purpose. I’m sure many of you have used these tills and on occassion they can work well but in my experience they are more hassle than they are worth. One of the security features is that you must put your item in the “bagging area” once scanned… I wonder how many small “pocketable” items have been stolen as a result of the lack of human supervision. I appreciate that this system is in line with the digital age and in the name of progression I happen to like many of the technological advances however automated tills need to be removed and not reimplemented until most of not all of the kinks are worked out.

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A day out in Dublin.

Today my class from college had an educational field trip to Dublin and if I'm to be completely honest when I woke up this morning I just wanted to go back to bed. I was not overly excited about a day out, a day away from class, and a chance to learn something new and maybe learn something more about myself.

We left Waterford at 9:15 and arrived at Dublin Castle at about 11:10 am. The day began with a tour of the design hub's exhibition "In the making". This exhibition was about different objects paused at particular stages of their design or manufacturing. I always knew that every object that is made has to go through a process to become the end product but I had never given much though to the full process. It was explained to us by our tour guide that there are several stages in the process of making any object, from conceptualization to the finished product and this particular exhibition opened my mind to the amount of work that goes in to making something as "simple" as a contact lens or a euro coin. This exhibition is only in Dublin castle for the next couple of weeks and I am really glad that I had the opportunity to view and experience it.

Believe it or not this was not the highlight of the day. We went on to the Chester Beatty library. I thought this was just a library but it was in fact a building that housed many of the items in the late Chester Beatty collection. On our tour we saw many of these fantastically preserved items such as many snuff bottles that he had collected and presented to some of his business associates. We saw beautiful Japanese and by MediaPlayersvideos 1.1" in_hover="" in_hdr="">Chinese items

that he had obtained on his many visits abroad: Paintings, garments, and artefacts that are now on display for the public to view. The items that stood out to me were the magnificent scrolls from Japan that had been hand drawn for a couple's wedding. They also had many artefacts and pieces of religious significance but we did not get to spend as much time in these sections of the tour as we had much more yet to see.

The next stop for our group was the National art gallery which is a very short walk from the library. This happened to be a real treat. I didn't think the paintings would have any affect on me but I was wrong. We focused on less then ten pieces in the gallery as we had limited time here (We had a lot to fit in for a 5-6 hour trip). Our tour guide was very understanding of this and showed us some very beautiful and historically significant pieces. 

One of the first pieces that we saw was by the artist Carvaggio, captioned: "The taking of Christ" it was painted in the early sixteen hundreds and depicted Jesus being betrayed by Judas. Judas is shown kissing Jesus' cheek and this was the sign to the guards. The piece also shows the guards coming to arrest Jesus and St. John who is just behind Jesus is trying to escape. This piece was full of emotion and the pure angst and betrayal in Jesus's face could be seen. Judas' face is full of regret and fear. 

We were shown many other pieces including a painting by William Leech, captioned: "A convent garden" 

This piece was probably my favourite of the day as it had almost a three dimensional quality to it. The scene itself is colourful and pretty but the technique that the artist used meant the paint was heavy and stood out which made the picture feel very much alive to me. 

We saw other fantastic pieces including:

Pablo Picasso - "Still life with a Mandolin"

Claude Monet - "Argenteuil Basin with a single sailboat" 

Johanes Vermeer - "Woman writing a letter with her maid"

Last but not least we visited the Book of Kells, this was very interesting however the part I found most interesting was the Trinity library. It was vast and had a magical feel to it.

As I previously mentioned on this particular visit we only got to see the highlights but all of the places that I got to experience today are worth a tour.

We finished off our day in the Kilkenny design shop, where our two accompanying lecturers treated us to a cup of tea/coffee before our trip back home to Waterford.

Today was a very educational experience and I am so thrilled that I was a part of it. I will be back again to explore these museums some more.

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Snapchat/facebook

It has only been a few days and I already feel completely disconnected from my friends. It is Saturday evening and I might have had plans if I had of checked what event's were on or messaged my friends. I have text a few people but it just feels much slower and less fun... As each hour passes I am less sure that I will last the full 30 days but I will try!! I miss social media so much but I feel it will be worthwhile in the end and that I may see positive results... Only time will tell

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30 days without social media

From today I will not be checking my facebook, twitter or snapchat for a total of thirty days. I have come to the realization that social media has taken over my life and I want to see how a month free from news feeds and instant messaging changes my life.. if it changes anything at all.

I didn't check my facebook at all today and my friend called me to ask if I wanted to go for burgers. They most likely used facebook first and then when I didn't respond called instead. I kind of liked getting a phone call rather then a beep that signifies either an email, text or notification... I am allowing myself access to my emails as I need that for college but still cutting down on other distractions. I already feel a little disconnected from the rest of the world.. I don't know what events are on this weekend or who's birthday it is today.. I can't look in on my favourite pages and their updates. this makes me feel a bit lonely which is strange and I have gone to log on to my facebook page about ten times today and then stopped because it has become a habit and a normal thing for me to do when I go online. I am looking forward and a little nervous about how these next few weeks unfold. Update soon!!