Tag Archives: absolute pleasure

There’s two strands to this disease & we think……….the silence is almost deafening!

My hospital visits haven’t featured much in my blog as to me they seem to be just full of the same old, same old, but yesterday’s visit was definitely different & I felt, worthy of sharing. I have been going backwards & forwards lately because it’s the New Year & all my appointments have started back again after the Christmas break, plus I also have my fortnightly treatment which is not an option, that is a must.

Yesterday was my joint appointment with my neurologist & immunologist in whom I would consider to be my key “ologists” involved in attempting to keep me as well as possible. I have many other “ologists” but they basically just step in when that particular part of the body decides to play up, for example, my gastroenterologist who takes care of my tummy! He unfortunately has been busy at times as this tummy of mine seems to be heavily affected!

Anyway, back to yesterday & my wonderful two doctors who couldn’t be more caring if they tried, had obviously had a bit of a chat prior to my appointment & felt yesterday was the appropriate time to talk to me about some serious “stuff”. I saw my neurologist & he did all his usual reflex/strength/blood pressure tests & then said that he & my other doctor had been talking & they thought it would be worth trialling increasing the dose of treatment I get each fortnight. I didn’t have a problem with that, in fact it seemed like a positive move to me, but he said my immunologist would talk to me further about the change & some of the reasons behind the change. By this stage he was starting to look serious, there was not a hint of a possible laugh, we were clearly talking serious business. I started to get those little flutters in my tummy, thinking to myself, what on earth is he going to discuss with me???

Back I went to the waiting room, now having to wait my turn for the Immunologist, come on Jen Jen I was telling myself keep it together there is nothing he is going to tell you that could honestly be that bad…….Candy Crush, that’s what I will do, I need to get off Level 81, I have been on there way too long nows my perfect opportunity! Out came the Ipad & just as I opened up to the Level I hear “Come on in sweet Jenni, sorry to keep you waiting so long”. Oh, that is absolutely fine I thought to myself, the longer I sit on that chair out there the longer it is going to be before I have to have my “chat”.

You see, my Immunologist is a very kind man & I could tell he didn’t particularly want to have this conversation, but in hindsight we both knew it was necessary! It is complicated, even for me to understand, so I am not going to bore you with all the nitty, gritty details but the long & short of it all is that the dreaded disease I have has two paths it can follow & one of them is where the nerves start to die but with the appropriate treatment they seem to be able to control it- that would be the definite chosen path. The second path is where no amount of treatment can contain the progression of the disease & the nerves continue to die all throughout the body. He said its path is known as the degenerative path & unfortunately from all their testings & treatments over the years they believe my body has chosen to take the second path. Bless his heart, the whole time he was explaining this to me & I was doing my best to fight back tears but really knew deep down this was the case, we know our own bodies better than any scientist or doctor, he held my hand & gently stroked my prednisone thin skin. You could tell he was as frustrated & disappointed about the whole wretched thing as I was, but he was not going to give up the fight as long as I was still willing to stand & fight!!!!! Was there ever a question that there be any other option, I will not stop fighting this battle until the day the battle beats me & I need to face reality, that day may well come! Until that day comes I will continue to get up each day, maybe with a little bit of extra help if we progress down the second path but I will let those numb feet hit the floor & I will start my day & I will try with all my heart & soul to start it with a smile because it sure beats starting it any other way, both for myself & for those around me!

It took a couple of days for all this information to sink in, I’m a bit like that if you hadn’t guessed a bit of a thinker & I tend to put things into slots until I’m ready to deal with them. Anyway, I have, as you can hopefully see from reading my post that I have well & truely come to terms with it all & the reality is none of us really know what is round the corner & we have to make sure that we treasure every day that we have been blessed with. Now, you might be reading this thinking if only she knew what each & every of my days was like, this I do not know & I don’t claim to even begin to even imagine what some of you are living through but one thing I have learned through this whole health “process” is that there is always, absolutely ALWAYS something in each day to be thankful for & happy to be alive for……..whether it simply be that the nice warm sun rays are shining through your window as you lie in bed wondering when you’re going to have the strength to get up, or the fact you’re going to a 20/20 cricket match (yes, you guessed it my beautiful friends are taking me to a 20/20 Australia vs England match tomorrow night) or that one of your close friends is dropping in for a drink & a catch up or dare I even say it, that you have a bundle of noisy,boisterous kids that drive you to drink sometimes, but what a blessing they are & will continue to be in between their moments of absolute painfulness!

I hope I have had my desired effect with this post that even though at times we get news that causes the direct seconds to moments afterwards of complete silence to be almost deafening, take some time after those moments of deafening silence & reflect on what you can possibly gain & learn from this situation. Life can be so uncertain at times, yet so full of excitement & wonderful surprises!

As my beautiful doctor says to me on multiple occasions ALL POWER TO YOU!

So powerful!
So powerful!

When family is just enough…..…

It had been a while since I had spent some quality time with my three youngest nieces & my middle sister & I was really starting to have withdrawals from them. You see before I got very sick & had to go into full time care I used to nanny for my sister, this was years ago when the youngest was a new born & she is now going on ten so as you can well imagine we are talking along time ago. Anyway, as my body started to give way on me & I became less able to take care of myself let alone three little girls I had to humble myself & admit I was no longer in a position to mind them & my poor sister had to go outside the family & look for a nanny through an agency. She has done this ever since & it has had its ups & downs but all in all it has seemed to work out!

The downside of it all is that I don’t get to see my little cherubs nearly as much as I would like to so when I get the opportunity believe me I savour every moment! It was last Sunday & my sister suggested I come over & they put me in the wheelchair & they take me for a walk around the area – this sounded like a great idea to me! Anyway, Mum & Dad picked me up from the establishment & we took our usual route (especially when my Dad’s driving) we drove past our favourite coffee bar & bought three cappuccinos & one flat white! Yummy I thought to myself, no matter how hard they try at the establishment their tea & coffee can never quite match up to a takeaway cappacino from the local coffee bar. Off we went to my sisters & it was nice because Mum & Dad were coming in to join us for the coffee drinking ceremony! There was a feeling in the air that made me wonder whether or not we were going to actually make it to the walk in the wheelchair but I didn’t care one little bit as long as I was with my girls I was perfectly happy! When family is just enough…….

The coffee was drunk by all, everyone was relaxed & happy, Mum & Dad decided to hit the road & so it was just me & the girls & my sister. We were loving lazing on the couches watching the wonderful dances my nine year old niece had choreographed herself, a few star jumps, a number of forward rolls & she was definitely showing some very creative talent! Then the big question came…..”Aunty Jen Jen, do you think I could do your makeup?” “Hmmmmm, I thought to myself, do I feel like being made into a clown, but then I remembered why I was there!” “Sure” I said to her, “just one thing I ask you don’t make me look like a cake face” (what we used to call her now eighteen year old sister when she was fourteen and used to come out of her bedroom looking orange after doing her makeup – might I add now she does her makeup amazingly and looks stunning everytime she leaves the house)! “Aunty Jen Jen, I’m  good at makeup you wait and see!”

So the process began…..she disappeared for a good five minutes & then she appears with her very own makeup kit! Never in my life have I seen anything like it, she has every brush for every part of the face, different shades of powders, eye shadow, blushes, special eye pencils that have very special jobs apparently & of course the absolutely necessary mascara! Right, paper towell was laid down on the stool incase of any accidental spills, everything was lined up & the show was ready to begin! I sat there like a princess being absolutely pampered & I would ask her the occasional question as to what was happening & she was able to tell me exactly what she was doing & why she was doing it…….a bit of blending of the powder to make sure there was no lines on the neck, of course the eye pencil which if I could remember its job I would be able to tell you but she certainly knew it’s purpose & then lastly I had to rapidly blink my eyelashes for what seemed like an absolute age so that the mascara went on just right!

“Well, Aunty Jen Jen I think we’re finished & you look beautiful, doesn’t she?” the question aimed at her almost fourteen year old sister who had shown a distinct lack of interest throughout the whole “process” other than to make the occasional comment on the heaviness of the powder or perhaps the mascara might be a bit thick, to which she got the usual sister to sister reply “shut up & mind your own business I’m the one doing Jen Jen’s make up”. The fourteen year old was now allowed to speak as she had been asked to give her opinion & she thought it looked great, possibly a little thick & dark in places but other than than that apparently I looked beautiful. Well, there was a smile from ear to ear & one very proud nine year old, she was very impressed with her handiwork! So, now it was time for photos, sensible ones & then of course a couple of silly ones. I will put in a few with this post so you get to enjoy some of fun that we all had!

Even though it was only a few hours that I spent there it was the best few hours I had had in a long time! There is something refreshing about children & their innocence & particularly when it is family it just makes it that much more special. I guess that is the reason why I titled this post “When family is just enough”, there are times when all you need & sometimes all you want are those around you who know you best & hopefully love you in spite of all your weaknesses & believe me in my case there are a few, but everyone is comfortable just to “be”, something I need on regular intervals when living in the “establishment!”

I truly hope you as the reader have times when “family is just enough……” – it is most refreshing!!

The make up artist with Aunty Jen Jen being silly!
The make up artist with Aunty Jen Jen being silly!
A nice one!
A nice one!
The made up one with the fourteen year old!
The made up one with the fourteen year old!

The Therapy Dog – Tash

One great thing about being in the ‘establishment’ is that I  can have my dog Tash stay with me for as many nights a week as I want. Mostly she stays about three or four and she loves it & so do the other residents. She has worked out when morning and afternoon tea is & that is her favourite part of the day as she firstly goes around and sees how many corners of biscuits she can have then she becomes the vacuum cleaner & she certainly manages to get plenty of crumbs especially on days muffins are being served!!

She also comes with me every morning and helps me deliver the morning paper to all those residents who order it, so she walks the entire length of the building and absolutely loves this time of day because yet again she has treats waiting for her , which of course she can’t resist.

Ofcourse one of the most important times of Tash’s day after “hanging out” with the residents is her sleep time, this is vital for Tash as she looooooves to sleep! Hence the photo below……….

In one of my posts I might take a picture of her visiting the residents that are in the nursing home & a lot of them are bedridden so I put Tash in her special pink doggy stroller…..yes, you read right she has her own stroller which is perfect for here as it is right at the level of their beds so they can pat her and give her kisses & ofcourse she just laps it up!

I am so grateful to the ‘establishment’ for allowing me the absolute pleasure of having my best friend come & stay here & it works both ways as I see the joy on so many faces as she walks into their rooms & ‘sits’ beautifully waiting with great anticipation that she may be lucky enough to get a corner of a scotch finger biscuit or a perhaps even half an arrowroot – who knows might be extra generous today!!!!

The final delight of Tash’s day which I cannot leave out is her morning puréed porridge tasting! Ofcourse I have to limit her intake but if I was to let her I am sure she would eat my entire serving which ofcourse is meant to be my breakfast! One thing I can say for sure is that I think it is a good idea that she is only here three or four nights a week & the rest of the time she goes to Nana & Grandads!

Tash eating her porridge
Tash eating her porridge