Tag Archives: cure

Finding A Magic Pill.

Good news! Our daughter has mild gastroparesis or delayed gastric emptying and no signs of coeliac disease or diabetes…phew! She has been prescribed periactin, which as far as I can see through a quick Google search, can stimulate the appetite in underweight people. I am also looking at her diet to boost her intake and she’s also having a food replacement drink.

So it’s looking like I’ve got all the bases covered…including having to grind up the tablets at the moment. She had a really good try at swallowing it but she just couldn’t even swallow half or quarter of a tablet. I was like this as a kid myself and I remember my poor mother grinding up tablets and mixing them with honey. It seems what goes around comes around.

I don’t think we could have had a better outcome from yesterday’s appointment. I was stoked, relieved, so very thankful and would have been doing the Happy Dance if I wasn’t feeling physically and emotionally drained. I still feel like I’ve been runover by a steamroller or squashed by that very heavy, metaphorical elephant. It was a long day and I did the 1.5 hour drive home admittedly via the deli in Wahroonga where I procured some top shelf gourmet mental health food: Double Choc Brownies and a gooey cinnamon bun. Cinnamon scrolls are a rare breed in Australia or at least gooey ones like this are. Wow, it was good!

Driving home, in some ways, the whole scenario felt like a huge non-event. Oh! It’s just mild gastroparesis and we were told there was essentially nothing they could do to treat it but we have this pill. Yet, this doesn’t negate that she’s underweight, a picky eater and was once again feeling sick after breakfast this morning. It doesn’t cancel out the extreme stress we’ve had with a child who can’t or won’t eat and ends up with low-blood sugar and gets cranky. I’m sure this isn’t going to magically go away by just clinking my fingers, either and it hasn’t!!

My kind of journey: time traveling back to the 1970s with Qantas flying over the Sydney Harbour Bridge.

My kind of journey: time traveling back to the 1970s with Qantas flying over the Sydney Harbour Bridge.

All of this is what people call “a journey”. However, when I think of going on a journey, doctor’s surgeries, hospitals, waiting rooms are certainly NOT on my itinerary. No! That’s not a journey. It might have its moments of sunshine but it’s still a perplexing quagmire and “journey” just doesn’t convey the intensity of those moments when bad luck, despair, pain and sorrow converge and attack. The bullets are flying. You’re madly scuttling for cover…any kind of cover just as a bomb goes off. Although you emerge from the battlefield unscathed without a scratch on the outside, you’re certainly NOT at the Teddy Bear’s Picnic either!!

If only life could be a continuous Teddy Bear's Picnic!

If only life could be a continuous Teddy Bear’s Picnic!

Here’s The Teddy Bear’s Picnic performed by Bing Crosby: https://www.youtube.com/watch?v=IrvkHAxnjzI

Don’t get me wrong. I’m as positive and the next person but it is what it is. Even when you come through the battle unscathed, there are still those invisible scars on the inside because you know what might have been. It didn’t happen but you went there in your mind and you knew. You saw. You anticipated but somehow found a U-turn.

So getting back to the elephant in the room…

It’s still with us and hasn’t gone away but it has very much shrunk and I hope become more manageable. As we left the doctor’s surgery, I picked the much deflated elephant off the doctor’s desk and brought it back home and it’s now sitting in my china cabinet alongside my vintage teacups. The elephant in the room is no longer looming overhead and intimidating me like a stand over man. It’s shrunk back down to size and I’m so relieved.

My next challenge after all these tests and appointments, is to convince our daughter that the elephant’s under control or at least will be in time. She is very much in the early stages of coming to terms things and this process is intensified through lack of food. As much as we might want things to go back to “normal”, she needs to be given the the time and space, understanding, compassion and acceptance to deal with this in her own way and I’m pretty sure that once she does that, she will start getting better too!

After this afternoon, I say: “Bring it on!!”

Thanks once again for your concern, encouragement and support. It means the world to me!!
xx Rowena

PS: Bex Powders used to be known as “Mummy’s Little Helper”

Terminal Cyberchondria…Yes! Please!

Being a blogger, a writer, reader and someone who likes to take responsibility for their own health, I’m a prime candidate for Terminal Cyberchondria. While not necessarily terminal in the sense of being life-threatening, you catch Cyberchondria from your computer terminal and more specifically by surfing the Internet for a diagnosis when you have more than a few “vague symptoms”.

Of course, having cyberchondria assumes that you are catastrophising again and your suspicions are wrong. That you have more chance of being killed in a car accident, or while riding a bike, than contracting that dreaded disease. No chance at all!! You don’t even need to cross your fingers, pray, say your Hail Mary’s. It’s all made up. In that great Australian tradition:”you’ll be right mate”!

However, once you’ve been struck by one or two rare, life-threatening diseases, that automatically opens the flood gates for you to develop any weird and wonderful disease… even the dreaded Ebola virus. After all, it only takes one infected person to board a train and it will spread faster than wildfire.

Well, I don’t have to worry about catching Ebola.

That has nothing to do with the fact that I live in Australia. Rather, you can pronounce and even spell Ebola and people have heard about it. That gives me automatic immunity. I specialize in the weird stuff…phenomenon even the doctors have to Google.

Anyway, since I had chemo at the start of the year, I’ve been having serious short-term memory issues and virtually no concept of time. For quite awhile, I’ve written these difficulties off as chemo brain, which is quite a common experience. In a way, this has been an interesting, quirky, experiment but I’ve now decided that it’s gone on long enough. I’m seeing my neurologist tomorrow.

There is quite a list of possibilities for my memory troubles:

  1. Chemo brain.
  2. Menopause.
  3. My shunt playing up. (I have hydrocephalus)
  4. Staying up too late.

However, I also started wondering whether these memory difficulties were side-effects of the new drugs I’ve been taking since I finished chemo. I’m on a drug called cellcept, which represses your immune system.

Google: a cyberchondriac's best friend.

Google: a cyberchondriac’s best friend.

When I Googled its side-effects, that’s when cyberchondria really kicked in. These side-effects include a virus that attacks your brain. In keeping with the unpronounceable dermatomyositis, this brain infection is called progressive multifocal leukoencephalopathy (PML). PML can be fatal. Symptoms include clumsiness, weakness that keeps getting worse, not being able to move or use one side of the body, and changes in vision, speech or personality (such as not caring about things that you usually care about and confusion).

After finding out the name of this dreaded disease, I’m wondering whether the people who name these weird and wonderful diseases and conditions, go fishing in their alphabet soup to put the names together. It has been hard enough to deal with “Dermatomyositis”, which is a serious mouthful but it only had 14 letters. The last word alone in PML has 19 letters. That must mean it’s very nasty indeed.

Going fishing in their alphabet soup. Is this how scientists name rare diseases? I'm starting to wonder...

Going fishing in their alphabet soup. Is this how scientists name rare diseases? I’m starting to wonder…

When I discussed the complexity of these medical terms with Geoff, he pointed out that they are intended to be descriptions so a medical person can quickly identify what is likely to be a complex medical situation far better than simply calling it: “Fred the Super Really Bad Disease That’s Going to kill You”. I can see his point but that still doesn’t help me explain what I’ve got and get any kind of acknowledgement from anyone outside the medical fraternity.

Ironically, while I have these two exceptionally rare medical conditions, I still have my tonsils, appendex and adenoids…all those bits people commonly have out and that’s what concerns me about PML. It’s rare enough and hard enough to pronounce, that it’s just my kind of disease.

You see, despite the cyberchonriacs, there are those rare winners of life’s rare lotteries who actually have what they thought they had. Yes, they actually have contracted one of these exceptionally rare, systemic, really nasty diseases. You know the type of thing that used to show up on the hit medical series House. Instead of being free to continue their explorations in cyberspace, before they even know what’s hit them they’ve been admitted to hospital. Yes, the proverbial Mac truck of bad luck was heading their way and they’ve just taken a very direct hit.

That’s me.

Dermatomyositis is a rare, systemic auto-immune disease where your muscles and skin attack themselves. It affects about 1 in 100,000 people and I’ve only met one or two people with the disease. You can get painful skin rashes and your muscles breakdown resulting in muscle weakness and wastage. While there is no cure, there is treatment which is largely effective although my case has proved more difficult to manage than average. The way I see it, I’m fighting myself and being rather strong willed, it’s been quite a battle. Dermatomyositis can also affect your breathing, swallowing and digestion and there are also the side-effects of the drugs and treatments. I am really surprised that I don’t glow in the dark after all my treatments. I’ve even had the Big C. That’s right. They’ve even blasted it with chemo. Thank goodness it worked.

However, while the medical treatments can be annoying, the hardest thing about having dermatomyositis has to be trying to explain it to anybody. I don’t know if you recall the Decore shampoo   commercial a few years ago where they had the person singing in the shower going: “D…D…D…Decore…Decore”. Dermatomyositis should be classified as some kind of tongue twister. I gave up trying to explain it years ago and just said I had muscular dystrophy. I thought it was a form of MD but it’s officially a neuro-muscular disease. Consequently, I now say it’s related to Muscular Dystrophy. However, if our son is around, he smiles with a baffled expression and tells people point blank: “You don’t want to know.”

Anyway, when you have a very rare disease, it opens the floodgates for all sorts of other conditions. After all, no one can tell you that rare can’t happen to you. Your last name might not be Murphy but bad luck sure knows how to find you!! It has your landline, your mobile and even your email address.

There’s a famous quote from the movie Casablanca which makes me smile:

“Of all the gin joints, in all the towns, in all the world, she walks into mine…”

That might have happened with dermatomyositis but hopefully, progressive multifocal leukoencephalopathy has somewhere else to go. It will board that plane with Ilse and Victor Laslo and disappear way beyond the clouds. Poof!

Goodbye Progressive Multifocal Leukoencephalopathy  (PML). Have a nice life!!

Goodbye Progressive Multifocal Leukoencephalopathy (PML). Have a nice life!!

Wish me luck with the neurologist tomorrow.

I don’t mind being told that I’ve over-reacted. A bad case of Terminal Cyberchondria is exactly what this patient has ordered.

xx Rowena.

If you are looking for information about dermatomyositis, which is a form of myositis:

The Myositis Association of America: http://www.myositis.org/learn-about-myositis/types-of-myositis/dermatomyositis

The Myositis Association of Australia: http://myositis.org.au/