Tag Archives: Conditions and Diseases

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!

Hello, Hello, Hello!!!

The sun was just coming up & I was in a wonderful blissful sleep dreaming about who knows what when all of a sudden I felt this body very close to mine, way to close for my likings at that time of the morning. I suddenly went from a quiet, blissful sleep to a heart racing fear of what was trying to get into my bed!!! My eyes opened very quickly & to my surprise there was the beautiful Maggie saying Hello, Hello, Hello!! Now that is Maggie’s usual greeting night & day, whoever you maybe you get the hello, hello, hello!

After I gathered myself & woke up a little more I tried to explain to the extremely demented Maggie that it was way too early for her to be up & worse still to be up & attempting to get into the wrong persons bed. You see, even though Maggie has severe dementia she is not one bit aggressive & is absolutely gorgeous. She has certainly gone back into her childhood days & ways & although I’m sure it is very sad & unsettling for the family to watch, she is certainly a pleasure to have & to be around. She was not at all convinced by what I was telling her & knew without a doubt she was in the right house!

As I lay there & wondered to myself what the heck I was going to do next as she also mentioned to me in “conversation” that she needed to go to the toilet, I quietly snuck my hand that wasn’t holding hers under my doona & pressed the emergency call button which was hanging around my neck. I knew if she saw me pressing any buttons she would catch on to the fact that I was getting some “friends” to come & see us. Before too long two staff members walked into my room & encountered a situation they certainly weren’t expecting to find. Both of them had a chuckle & attempted to explain to Maggie that she was in the wrong house & her house was down the hall!!!

‘No, no, no’ she tried to explain to them, ‘ I live here with my friend’……….more laughs were heard. Anyway, after a short discussion & some light convincing Maggie’s feet were firmly planted on the ground again & off she went to see if they were right about her house being down the hall!

Well, there I lay all on my own again with still about thirty minutes before I had to get out of bed myself but I knew there was no way that I was going to go back to sleep. I started to think about Maggie & wondered what she was like as a little girl. I thought to myself, I bet she was the one that made everyone laugh & have a smile on their face. Then I thought I bet she was a real mischievous teenager, giving her parents plenty of cheek. Even as a grown woman with a young family of her own she would have been happy, laid back & ready to take on whatever it was the world sent her way. You see, I don’t know about you, but so often I look at people like Maggie, who wouldn’t  have remembered that she had tried to get into my bed, by the time she got back to her ‘house’ & I see them simply as they are today. But, I feel so challenged on so many occasions living in ‘the establishment’ to remind myself that all the ‘Maggie’s’ I live with we’re once healthy little boys & girls & then young adults & then in most cases older adults & they just happened to be the unlucky ones that the dreaded “D” word, dementia, decided to hit.

I am glad I had that experience with Maggie, (even though it was a little unnerving initially) as it forced me once again to remember how precious life is & to never take a day for granted because none of us, not one, have any idea what is in store for us around the corner! It also was a good reminder to try & be more patient with the many ‘Maggie’s’ I live with as they never chose to walk this road that just happened to be mapped out for them!

So to Maggie I say Hello, Hello & Hello (even if it is at 5:45 in the morning!!!!!)