Tag Archives: Nervous system

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!

Oh no, it’s Tuesday already………..

As I’ve talked about in my earlier posts part of the reason why I am ‘living with the oldies’  is that I have a chronic illness which is attacking my nervous system. This unfortunately involves multiple organs in my body and I won’t go into all the gory details in this post but one thing it does require of me is to go to the hospital every second Tuesday for intravenous treatment. The aim of the treatment (I think) is to try and build my immune system and also slow down the progression of the disease, which both the doctors & I believe is having some success.

Since I have had so much treatment over the years & so many needles attacking my veins wanting blood it was becoming increasingly harder for them to get a canular each fortnight to put the treatment into my veins. It actually became quite distressing for me as they would have to find different people to have a go as each person reached their third attempt allowance. Eventually it was decided amongst the doctors, nurses & ofcourse myself that they would insert a device called a port-a-cath which sits just under my skin on my right chest, just below my collar bone & all they need to do each time they want to give me treatment or take blood they just ‘access’ that port (I will include some photos below so you get some idea of what I’m talking about). I must admit it is much less traumatic & as long as they get the rather large needle in the right place, it is smooth sailing.

The whole treatment process takes about two & a half hours then we go through the procedure in reverse to get the needle out. As the line from the port goes directly to my heart it is extremely important that they are very careful with their hygiene techniques which I must say the nurses are pedantic when it comes to this. Not once have I felt nervous or unsure about whether they are confident in what they are doing, they are just so lovely in this treatment day unit & it certainly takes a special type of personality to work in a unit like that as there is often people coming in there for months who might not turn up one week and the news is the dreaded disease has taken another one. It is a unit where they are infusing chemo, blood & every other poison oops I mean medicine you can think of.

Waiting for the dreaded access needle 😭
Waiting for the dreaded access needle 😭

Well, another Tuesday is over for me & it’s time for me to make the trek home. I usually feel fine round this time, perhaps a little tired from being poked & prodded but I’m holding up well. Then, there is Wednesday morning…….I generally wake up with a bit of a headache & my body feeling like it has been run over by a truck! But, NO, I can’t give into it, I must ofcourse listen to my body but I can’t give into it. Up I get, have some wonderful kind carer come in round 5:45am to help me with my shower, get dressed & ofcourse then the compulsory early morning coffee . I’m ready to start Wednesday & looking back on Tuesday it really wasn’t that bad after all!!

The needles in & were ready to go yippee!!!
The needles in & were ready to go yippee!!!