The Jar with the Hospital Life

The Jar with all the Hospital Life

Hi Guys, 

So, it’s been a little while since my last blog entry but things have been a little hectic on this side. But haven’t they for all of us lol

I though since I spend a lot of time as a resident of St Andrews War Memorial Hospital I would focus this blog in the area of ‘hospital life’.

See, its one thing to have one or even just a small handful of experiences in a hospital environment in your lifetime. Its kind of like one of those moments that sticks with a person: a moment you think back to in a certain situations; like “oh, remember that time I was in hospital” 

I don’t point this out to discredit any painful or traumatic experiences that anyone has gone though because we all have our own upsetting and traumatic events but,  for myself, being admitted to hospital is just about as regular as brushing my teeth. 

Since September of 2016 (after a 6 week stay in hospital) I have been receiving an intravenous treatment called immunoglobulin(IVIG for short). I have spoken a fair bit about this treatment in another one of my blog entries but basically, immunoglobulin is separated from donated blood and then infused into a patient with the intention of reducing pain with people who have my condition and placing the condition into a, somewhat, temporary remission someday, for a period of time. 

Due to the fact that I have two other neurological conditions that the doctors and I are juggling, plus the fact that I have some very serious allergies to MANY medications and I often have trouble tolerating the IVIG, a decision was made early on that I would be admitted to hospital as an inpatient rather than a day infusion patient as it was far safer for myself and if and when complications did arise the staff were a lot better equip to deal with it quickly and efficiently. 

The down side to this whole inpatient plan is that for the last two and a half years a huge, gapping chunk of my life has been spent living in a hospital bed. I know every single nurse by name (and about their lives also) on the 5F Neuro ward. I know most of the orderlies and volunteers throughout the hospital who take you to MRIs and Xrys and show you to your rooms. And I know the same people at the front desk who always say, “Oh you’re back again”, as if its almost a choice that I just make for fun because I have nothing better to do, but I just politely respond, “oh I just can’t stay away” while on the inside I just want to pick up my bags and run out the door. 

I always equate being in hospital to sorta being like being in seventh grade camp; you eat dinner at a ridiculously early time, they take away any medications you have and now they are in charge of when you can take them, you need to ask the nurses if you can go for a little walk around the ward and they check on you all night long with a flash light to make sure you are still there/alive (but at the very least you can still smuggle chocolate in). 

Basically being in hospital makes you feel like you are 12 years old again. From the minute you walk through those doors you are entrusted into their care, which basically means you are stripped of almost all your control. 

You need to ask a nurse if you need more water, if you need more towels, if you need ice or a heat pack, if you want to go for a walk, if you need to take a med, if you want your door closed, if you can take a shower in the evening instead of the morning…the list goes on. 

I do this once a fortnight. Sometimes its just for one night if I’m really lucky, if things go really well and I have no complications at all I can go home the next day but this doesn’t happen very often. 

Most times I’m in hospital for about three days recovering for the infusion and all of the side effects that came along with it. And at least while I’m in hospital they can administer certain medications to help me recover more smoothly than I would be at home on my own. Trying to manage the side affects and the other neurological disorders all at the same time on my own at home is a mess so I can truthfully say I am grateful that I have access to hospital support and care, but it doesn't make it any easier to re-live the same cycle every two weeks.  

Hospital starts to take over your life when you are admitted every second week and you end up spending most of that week in hospital. I can no longer work because of all my nerve damage and muscle wasting, but on top of that it is very hard to be employed by someone who understands my situation and is accommodating too my unique health situation. My last few years before I got sick all of my work experience was working as a Nanny and it is very hard to find a Nanny family who understands that I will be unavailable two weeks out of the months plus there is the high possibility that I could become very ill unexpectedly and would have to cancel at the last minute because they have ended up in hospital yet again. I don't want to be that Nanny (or any other employee for that matter). 

I have also become a lot more isolated as far as friendships go compared to the amount of friends I had before I got sick. Of course I have a small handful of friends and family that I hold close and that I know will always be with me along my life journey, but going in and out of hospital on such a regular basis and dealing with my illness’ pulled me completely away from my big social group of friends. It is never anyones intention to lose contact but when I'm dealing with my illness' ad their world keeps on spinning life just happens. I also think it's really hard for people to understand how debilitating all of this can be until they have seen it up close at its worst and it's the the people who are still in my circle who are the ones who have seen all of this raw; without an instagram filter or a love heart emoji attached to it. 

Not everything about hospital is bad. It isn’t some monstrous place. It is a place where I have really learnt a lot about myself. I have been pushed to my absolute limits with pain, the kind of pain that you feel like is literally going to kill you but you get through it because you have no other choice. Now when things are bad I look back to those experiences and I think to myself ‘Well I got through that, so I can get through anything’.

It is also a place where people have shown me incredible kindness. There are particular nurses who look out for me and bring me things like juice or soft drink and write love hearts on my white board and even share a hug or hold my hand when I need it. It’s those small acts of kindness that make such a huge difference to my day. 

And my Mum comes to visit me EVERY SINGLE DAY I’m in hospital. She’s my rock and I don’t know what I would do without her. 

 
I think the hardest part about being in hospital so much is the little bits that you lose of yourself each time you go in. You become a number. At the end of the day the hospital system doesn’t really care about your feelings; it's there to keep you alive, by any means necessary. I have gotten to a point where no amount of needles, blood tests, cannulations, lumbar punctures or any other invasive tests scare me but the part that I hate is the mark they leave behind; the massive bruises that can take months to heal and splitting headaches from the lumbar puncture fluid leaks. That is the part I don’t think I will ever get used to. 

At the end of the day I really am lucky that I have access to all of the health care and treatment. There are so many people all around the world who would benefit from the treatment I receive but for a multitude of reason they don’t have access to it. But it doesn't change how weird, hard, stressful, bizarre, odd, funny, difficult, sad, tricky and lonely living a half hospital half home life. 

My hope is that further down the track we start to stretch the length of time in between the infusions to three weeks and so on…

Finding passion in photography has been comforting as I have a lot more freedom to do shoots when I am feeling healthy outside hospital and then I can edit the photographs while I’m in hospital. 

Anyway, enough rambling from me. My next admission is in a couple of weeks and I thought I might do ‘A day in the life a patient’ on instagram and like it back to this Jar post so you can see a little more of what things are like in hospital day to day. 

Thanks for reading guys, I’ll be posting again really soon 

Love and light to you all, 

Megan xo

The Performance Jar

Hey Guys, 

So next week I will be in Hospital for about a week so I will do a special blog on Hospital life then but I thought I would take this opportunity to open the performance Jar. 

So would you believe me if I said I was a Drag Queen for a couple of years? Soooo many people double take when that part of my history is revealed to them. This was a paying job that I loved and I proved to people that a Woman can do anything a Man can do. But to get the whole picture of this story I think I have to start back at the very beginning. 

When I was 2 ¾ I had my first ballet lesson. I was beyond excited (from what I have been told). I was so enthusiastic but my ballet teacher would have to come and hold my hand throughout every single class because I would just get so caught up in the music and do my own thing instead of following the steps. 

My ballet teacher's name was Mrs Eva and I stayed training with her till was 13. She was a woman in her mid 70’s who was a Ballerina in Poland and escaped to Australia during WWII. This woman was tough as nails. The older I got the tougher she got on me and this woman taught me that absolutely nothing worth having comes easy in this life. I loved her like another grandmother but I also feared her, as she demanded perfection. From that time that I was 2 ¾ till I was 13 she groomed me to be a professional ballerina. She trained me to audition for the Australian Ballet but at 13 I made the fateful decision that I didn’t want to spend 30+ hours a week (+school) training. I wanted to hang out with my friends. I wanted to go to the dance school that my friends went to and do jazz and hip hop classes. I wanted to be a normal kid. 

So I left Mrs Eva and any hope of ever becoming a ballerina behind; I guess at 13 we aren’t really qualified to make lifelong decisions. I know it must have broken a small part of her heart and it broke mine too after years and years of literal sweat, blood and tears together but I knew that other students would come along and fill that space in her heart. To this day she is still one of the most influential people in my life. Although she was extremely tough and she demanded perfection she proved to me what a strong, independent, fearless woman looks like; and I miss her and think about her all the time. 

Flash forward a few years and I’m about 15 and being the creative person that I have always been, I’m starting to feel that creative expression itch. I wasn’t sure what I was supposed to do; my toned, athletic ballerina body had gone after a couple of years out of the game (plus puberty lol) so that was a no go. But something I have always had a huge passion for is film. As a little girl I would get my younger cousin and we would act out all the scenes to titanic (our favourite nighties Flic). We still know all the words to that film by heart. As a little girl I would watch films like 'The Wizard of OZ' and 'Funny Girl' and would just idolise Judy Garland and Barbra Streisand. They are still my idols. 

So I decided to join an acting class and I loved it! There is something really freeing in stepping into someone else’s shoes for a small while. I continued my classes and I moved up the ranks in difficulty until eventually I was given the opportunity to audition for ‘Queensland Actors Playhouse’. I was sure I was going to tank the audition but I managed to get in! I did this for about a year and then I started having some health problems (glandular fever) so I took a break. 

It was during this time while working for a Ten Pin Bowling Company that I met a really nice guy who I ended up becoming really good friends with. We would do a closing shift together at the bowl and the go to the valley and head out to the popular LGBTI bar and stay out all night having fun. And that was where I was introduced to my first Drag Queen show. I was just standing there all mesmerised by the glitter and the sequins and the fun. I loved it!

One day my friend came to work and told me that he was entering a Drag queen competition that the club was hosting. The winner got a spot as a regular on a particular night which was a pretty big deal so he went all out for it. He did the wigs and the sequin dress and the pumps and the big jewellery and a whole bunch of his friends and I went to support him in the audience and he was amazing. And he won!

After that night his Drag queen performing career took off at a huge speed and he was performing at all the LGBTI clubs in Brisbane. I used to go to his shows all the time and as a lovely surprising result, I made friends with a lot of the other Drag queens in Brisbane and the more I watched them perform, the more I wished I could do what they did. I loved the glamour; the big hair, the high heals, the big coats, the sequins and rhinestones and I loved how you could just take on a totally different persona up there on stage and be over the top. It was camp. I wished that I could do it but alas, I’m a woman and Drag just wasn't my game (or at least thats what I thought). 

I had this one friend that I had told (in confidence) about my little pipe dream (and he was so supportive) and he so happened to be a Drag Queen at LGBTI nightclub we had been going to for years. When we had had a few drinks after one of his shows I would bring it up but say how I was scared of what other people would think of me (could a woman truely do this? How would the other queens react? Would it upset some of my friendships?).  

Anyway one night after a couple of drinks this friend of mine had had enough of my doubting and just turned to me and yelled, “That’s it! I’m booking you in for a guest performance spot with me next Monday!”

And no matter how much I tried to back track (because I was terrified) it was already done. He had told the club owner and I was all booked in and advertised so I couldn’t back out. And I will forever thank him for doing that because he gave me the push I needed. 

So in a week’s time I got everything organised; the costumes, the wigs, the weaves, the makeup, the shoes, the performance, learning every word to each song to lip-sync perfectly. I had been teaching myself about makeup from Drag tutorials on YouTube for months so I tried my absolute hardest and it took me almost 3 hours. The moment before I stepped out on the stage I wanted to be sick but once I was out there I felt like I was home. The stage has always been my home.

The crowd reacted really well and slowly over the next year I went from being no one in the Drag community to being booked and paid at most of the major LGBTI clubs. I found out there was a term for what I was doing; it is called being a ‘Bio queen’. The term is ‘Bio” meaning biological woman. 

When I got sick this was another thing that slowly filtered out of my life but I am so glad that I got to experience it. It is something that not many women can say they have done and I was proud of every performance. I met some incredible people; people that I made lifelong memories with and people who taught me so much about life and if they are reading this they will know whom they are. 

So I guess the whole moral to this story is ‘don’t judge a book by its cover’. When people find out about this little bit of my history they are always shocked; they never think that I’m ‘the type’. They think that I’m not bold enough or brave enough or that I’m really just to boring. But when I was a little girl my ballet teacher Mrs Eva taught me that Women are strong as nails and can do anything they put their minds to. 

And that’s exactly what I did; I put my mind to it. 

Love and Light, 

Megan 

The Nanny Jar

I was an ordinary person before I got sick. I had a lot of different jars that filled my life. Hopes and dreams, bills to pay, the mon-friday flow of things and family and friends outings, drinks and parties. Todays Jars that I’m going to open is my Job that I had before I got sick. A job that I loved, a job that I took pride in, a job that I was good at and a job that I miss very much. The Nanny Jar. 

Ever since I can remember I have loved children. Even when I was a child myself I loved children. When I was in Kindergarten I would refuse to take a nap so the teachers used to let me go around and pat the other little ones off to sleep with them. I was three years old. 

The reason I started Nanning was because I wanted to form closer, more impressionable relationships with the kids I was caring for, which is something that is much harder to obtain in a childcare or preschool setting. I wanted to make a difference in kid’s lives, even if it was a small difference, I would feel like my job was done. 

I still remember my first Nanny position. I was caring for a 4 year old and a 6 year old. I would care for the 4 year old while the 6 year old was at school and the 4 year old and I would go to swimming lessons, the art gallery and museum, the park, the library ect. For the first few weeks I felt like I was handling two newborns; suddenly entrusted with these two precious beings and I was starting from scratch. 

I got the hang of it quickly (even though you have those many 'what the hell am I doing, HELP ME GOOGLE moments)  and every 6-8 months I would generally move on (which would always break my heart) because either the child was starting school or a parent was no longer working and yes, once or twice, I did have a couple of ‘those’ type of mums that made working with them really, really, really hard (think ‘the Nanny Dairy’s’). 

I absolutely loved my job though and there was one particular family that I worked with for quite some time that I fell in love with. They were a family of 4 children, 2 pre teen boys and 3yr old twin girls. Their Mum and Dad owned a pretty large business so hours were quite unpredictable and they would often travel interstate for conferences and I would live in with the kids on these occasions. 

Those little 2 little girls stole my heart. I would wake them up in the morning and put them to sleep at night and do everything else for them in between. We would go on outings to Shorncliffe Jetty, play group, the museum, the park, the farm and everywhere else imaginable. We did every art and craft activity under the sun; painting and drawing was a daily occurrence. We played the frozen soundtrack on repeat all day, every day and they would sing their little lungs out. 

I knew their favourite colours, their favourite snacks, their favourite toys, their security blankets, their favourite movie, what makes them happy, what makes them sad, how to deescalate their meltdowns and what to do when they were having a bad day. 

If they hurt themselves they would put their little arms ups in the air and call my name and boy would I run for them and pick them up, to reassure them it is all going to be ok. I would hold them when they were sick and needed that comfort. Every single day they both would tell me at least once that they loved me and it would melt my heart.

And then I got sick and I had to say goodbye. And it broke my heart. That was one of the hardest bonds I had to say goodbye to but it's not fair to little ones to tell them you will back to visit sometimes but you can't be Nanny Megan anymore. They don't understand why you can't be there all the time like you used to be and its cruel to go back for little visits when they cry and cry when you have to leave. I had a couple of last visits with them when I got out of hospital and explained why I couldn't be Nanny Megan anymore. They cried, I cried. I gave them both Queen Elsa dresses because thats all they would talk about, day in, day out. Thats the funny thing about life; we never know which relationships are going to be our most important until we've lived them.

Being a Nanny is a different kind of job. You go to work every day in someone else’s home, build this incredibly loving and unique bond with a child (all the while knowing that one day you will have to leave this child) and from the beginning of your day till the time you get home your stress levels are at a 30 out of 10  because you are so hyperaware of every little thing that could go wrong or could bring harm to that child. You have been trusted with a person’s most precious little being and you want to make sure absolutely no harm comes their way. 

But it is a job that comes with some incredible rewards. When you witness a baby crawl for the first time, thats a wow moment! Or when they finally learn how to write down their name, you basically want to jump up and down squealing with excitement. Or when a little girl in your care tells the lady at the bank that ‘She’s smart too’ when the teller tells her she looks pretty (because you remind her each and every morning when you're getting her dressed that she’s not just pretty but she’s smart too). Those are the proud moments. They may seem small but they feel so huge when you are the one there to witness them.    

Hopefully when my health improves a bit more I can go back to a bit of part time Nanny work but as that certain little clock has been internally ticking (tick tock) as I get a little older I’m rather trying to get my health to a place where I can finally have my own little ones; something I’ve always wanted. 

But I am so grateful for all the experiences I have had with every child that I have worked with. Each of them is special and they all have taught me something. They have all left a special spot in my heart.

Well that’s the Nanny Jar. I’m not really sure what Jar I’m going to open up next week….I’m going to have to have a think. 

Until then love and light, 

Megan xo 

The Treatment Jar

Hiya guys, 

Thanks for joining me again. I hope you have all had a beautiful week!

So in my last blog entry I spoke a lot about my diagnosis of Parsonage Turner Syndrome. It has been a crazy ride and even two years later I suffer consequences of the disorder on a daily basis.

But today I was going to talk a little bit about the treatment my neurologist has been using, in combination with some oral medications, to help manage pain and help with flare-ups. 

The Treatment I undergo is called ‘Intravenous Immunoglobulin’ or ‘IVIG’ for short. We all, as humans, create immune globulin in our blood. When people donate blood at the blood banks scientist then separate the gamma globulin (exactly the same way they would plasma) and bottle it up to infuse. It takes 10,000 to 150,000 blood donations to make just 1 bottle of IVIG infusion so a massive THANKYOU to all those silent heroes out there donating that precious gold. The reason these infusions are giver to people with Parsonage Turner Syndrome is because, although PTS is a Neurological disorder, there are studies to suggest that there is some sort of immune system involvement and with IG being an immune builder it can help build the immune system and have the potential to help with symptoms ect. 

Going back to October 2016, when I landed in hospital and was first diagnosed, I was initially an inpatient for almost two months and thats when I began the IVIG Treatment. Initially I thought that the treatment would be simple, like a saline drip but I was wrong; nausea, vommitng, dizziness, headaches, shaking. And I'm allergic to a large group of drugs so there is very little they can do for me bar pain relief. 

To keep my body functioning and pain levels at a reasonable rate, every second week I go into St Andrews Hospital as an inpatient and have my treatment done over night. If the treatment goes well then I go home the next day but if I have had side effects or complications then sometimes I will need to stay another few nights. 

Having this bizarre life where I go from home to hospital to home and back again has changed my life completely. I can’t work right now due to the unpredictable nature of my illness and when I may need more treatment. I don’t really have friends anymore (other than a very small select few who I can count on one hand, they know who they are and are amazing). I can’t travel or climb mountains or safely carry a baby in my own belly just yet (that’s the one that kills me). 

But all of these things are not fixed. Two years ago I couldn’t even get out of the hospital bed, like I physically couldn’t get up and now I’m doing normal things like driving and cleaning and  spending time with my dog again. And I’m also dipping my toes back into my passion of photography, which feels incredible! And it’s thanks to steady long-term IVIG treatment. Approximately I have had about 40 IVIG infusions but I believe that number to be higher as I have had more treatments when I have been in on long admissions. It has been sticking with these 40 infusions; going into hospital 40 times that has gotten me to where I am and hopefully keep going. 

I'll talk a little more about hospital life in my next post but if any one has any questions or suggestion please don’t hesitate to DM me. 

I leave you with this quote, 

Love and light,

Megan                                                                                                                                                                                                                                                                                                 

“You are the series of mistakes that had to happen for you to find you” 

___ Atticus

The Girl with all the Jars

A friendly hello to one and all,

First of all, thank you for popping on over here and taking the time to read about what I have to say. I have never written a blog so this whole process is new to me and I’m sure I will be learning along the way.

My name is Megan, I am just about to turn 26, I work (when my health is behaving) as a Nanny/Novice Photographer (my photo above), I live in Australia and my favourite movie is a tie between 'The Wizard of Oz' and 'Funny Girl'. When I was studying at University I was a Film and Television studies Major and 90% of what I enjoy in my own time usually involve something creative (think photography, vintage film, musicals ect).

I like to think of my life as a huge bunch of glass jars stacked into a room. So many stories and so many emotions, that I have to stack them away neatly. And when I need that particular emotion or story I go and get that glass jar so quietly and carefully, so as not to make a storm. This Jar is 'The Jar where it all began'.

Things in my life were coasting along fairly nicely.  In 2015 I was doing some fun performance art and singing work plus Nanning with a dream family with 4 beautiful children who I just fell in love with. At the end of 2015 I met my (now ex) fiancé. We both fell head over heels for each other from the very start she became my whole world. Six months later she proposed and I envisioned the happiest, most perfect future for us.

But life happened… And as beautiful and astonishing as life can be, it can sometimes play some nasty, shitty tricks on you too.

About mid 2016 my fiancé was hospitalised repeatedly in a very serious condition and then just as she was coming out of hospital I thought everything would go back to our normal, happy life. But that’s when things really fell apart.  Life has never been the same since. That is when our story begins…

I had been feeling rundown for weeks. Like the kind of rundown where you feel like you are pulling yourself through mud all day long. And then the pain started. It started as a ball of fire about the size of a baseball right in the shoulder blade on my right side. As days went on I started to get sensations of pins and needles down my right arm and then into my two little fingers. All the while this was happening I was still working as a Nanny; taking care of twin 3 year old girls and two boys aged 12 and 13 all sole charge, roughly 45 hours a week and my fiancé was in hospital recovering from a newly diagnosed neurological condition; stress was high to say the least.

As my pain got worse I went to visit my GP and after listening to what I had to say she thought it was likely I had pushed a disc out and with some physiotherapy and rest it would recover. I thought about it and it did seem to make some sense; all day long I was picking up toddlers, buckling up car seats, carrying way too many bags, doing load after load of laundry. So I put the idea of the slipped disc to the back of my mind, residing myself to the fact that it will repair its self if I would just wait patiently; and oh how naive I was.

It was a couple of weeks later somewhere between 2 and 3 in the morning and all I remember was the pain that was searing though both side sides of my back and running down both arms like fire ants chomping though my skin. My ex-fiancé was next to me in bed at the time (on one of her brief stints out of hospital before illness caught up with her again and she had to go back to St Andrews). She told me later she had been given the fright of her life, as did my mother who came running when she heard the screams because I was in so much pain I just couldn’t articulate what was happening to me.

This experience proved that what was occurring was very unlikely a disc problem as it had moved to both sides of my body and I was rapidly losing strength in my arms and legs. When I saw my GP in a lot of pain the next morning and she realised I couldn’t even pick up a coffee mug she said the dreaded words “Its Hospital time”. Luckily, I was able to pick which hospital I could go to and I picked St Andrews as they had been taking such good care of my partner and at one point we actually ended up in hospital at the same time. The Nurses were so sweet and they would wheel me up to say goodnight to her every night.

One of the best things that ever could have happened to me was being assigned my Neurologist. From the first day I felt like I was in the hands of an incredible doctor but also a man who cared about my feelings and my wellbeing.

We did test after test after test. We did bloods that were sent off to Oxford in England and Universities in the U.S. We did CT scans. We did MRI Scans we did Lumbar Punctures. We did Nerve Conduction Studies. And in the end it all boiled down to one diagnosis, a rare neurological condition with autoimmune properties: Parsonage Turner Syndrome. It affects approximately 1.6 people per 100,000. To put it very basically, when a person has Parsonage Turner Syndrome their body starts to reject and fight the nerves in the brachial plexus area of the body (across the shoulder blades, the back, the neck, chest, the arms and it can sometimes affect the legs also). This causes extreme nerve pain and malfunction of the nerves. Once the nerves have been damaged the muscles start to become extremely weak and they atrophy, losing all their strength.

All of this left me in extreme pain, bedridden and hospital bound. I was an inpatient for almost 2 months after my diagnosis. It has effected almost every single relationship in my life from the acquaintances that were apart of my life back when I was ‘healthy’ (and were never seen or heard from again) to the closest people in my circle.

I feel that all of this illness and pain was a huge factor to battle with in my relationship with ex-fiancé and months later we ended our engagement. Whether she knows it or not I still care for her deeply and I treasure all of our beautiful memories.

Since my diagnosis I started receiving some treatment for the Parsonage Turner Syndrome. Although there is no cure there is a treatment that is aimed at improving PTS patients quality of life. This treatment will be the topic of my next blog!

Thank you so much guys for joining me on this the journey. I cannot wait to share more of my story with you. The good, the bad, the challenging and the magical.

Until next time,
Love and light ,

Megan