THE PROBLEM WITH BLOGGING

I have to admit I'm having a moment. When I started blogging it was for two reasons. Firstly I wanted a way to spread the word about the condition called Cowden's syndrome and secondly I needed a healthy way to de- stress. I could have taken up drinking but as I am a very cheap drunk that would have been pointless. So writing it was.

But things have changed and I'm not sure how exactly. All I know is that I'm no longer getting the urge to write it down. My "go to" form of therapy is no longer working and that saddens me because for two and a half years this blog has been my salvation. But of late, writing and even talking about our health issues has become tiresome. And I suppose it's because there is always something wrong and because I'm tired of people only associating this family with poor health. We are so much more than this illness.

The other issue which constantly troubles me is my inability to write things down exactly as they happen.  You can't bitch or moan about medical personnel for fear of litigation. You can't rant or rave about services provided for fear of it getting back. And...you can't tell a story as it exactly happened for fear of being labelled as negative or being told to be positive.

So, my question is what's the point? Why not just keep a diary and write down WITH A PEN the whole truth and nothing but the truth. Bitch and moan to the pages in private. No litigation because no one will see anything, and the " positive thinkers" might go curl up and die somewhere, when they have nothing to feed off.

The reason I continue is because " it is what it is". Even if sometimes I can't write the whole story, it still paints a vivid picture of what life with a rare disease is like. And in my small way I see that as educating the masses, or at least those who read my blog. Maybe it might lead to patience, tolerance, understanding. Who knows?

Living with a rare disease is rough. Last week I accompanied my daughter to a check up. The results were great. The doctor even said some magical words which made me cry, " we are winning". Today a week later she had an incident which resulted in a short hospital stay and her father and I driving like mad to be with her. This is how it is with a chronic condition - one step forward, two steps back.

                                    February 29 is Rare Diseases Day world wide.

As Rare Diseases Day once more approaches, I want to take my hat off to the following people who make coping with my rare condition a bit easier. This list is in no way conclusive.

• A spouse who holds my head above water.
• A daughter who hugs.
• The support crew ( like my sister) who drop everything to help.
• The doctors who ring you with results because they know you're anxious.
• Nursing staff who always have a kind word and time to talk.
• Pathology staff who insert canulas first time.
• MRI staff who always have a blanket ready.
• A patient GP who always does his or her best to learn more about your condition.
• Kitchen staff who sneak you another biscuit.
• Receptionists with a friendly tone to their voice
• Employers who understand and send flowers.
• A mother who makes soup and other food because if you eat you'll get better

Till next time...xxx
ST

A COW AND A CALF

I am publishing the following with my daughter's permission. It is her decision to share this news and she has not been coerced by me in any way. My daughter is 21 and has an intelligent, strong mind of her own.

As many of my family and close friends know, back in January I got tested for Cowden syndrome. Cowden syndrome means that I am prone to getting lumps and am at a higher risk of getting cancer. It is also known to be the cause of AVM's to grow so fast (as demonstrated by the AVM that was growing in my brain.) 1 in 200,000 people suffer from this syndrome in the world. 2 of them in WA.
Yesterday I was the 3rd person to be diagnosed in WA with the condition. This now explains the reason behind my brain problems. Am I happy that I have been diagnosed with this condition? No not at all. But it's now nice to finally have an answer as to why I have been so ill for these past two years.
Cowden's is not curable. It is something that has been with me since birth. Why am I writing this on here? Because I want people to know that I'm ok. There's is no label stuck to my head that says that I have Cowden syndrome. I am going to live life to the best of my ability, as I have done so for the last 21 years. Thank you to my parents, sister, extended family and close friends for their love and support over the last few days. I will continue to ride this crazy train that we call life, to the best of my ability xx Ashton

Of course as her parents, Mark and I are shattered because we held on to a sliver of hope that the result would be negative. However realistically we are not surprised, the evidence has been mounting for some time.

There are some differences to my diagnosis and my daughter's diagnosis. I was 44 when diagnosed. She is 21. I spent a long time wondering why things were happening to me and wondering why I was different. She is diagnosed at a young age. She knows what the problem is and I can not begin to explain the relief this brings. It sounds ridiculous to use the word relief but not knowing hurts and drives you crazy. When you know, you can plan and be pro-active. Also, the doctors take you more seriously.

In the 5 years since my diagnosis the genetics field has literally exploded. There are things I know now that I didn't know 5 years ago. There are discoveries being made all the time. It is quite possible that within Ashton's lifetime there will be a way to manage this situation, this genetic condition, better.

Yesterday, Ashton joined the online support group COWDENS SYNDROME AUSTRALIA. Again it was her decision. She was welcomed into a warm, protective environment and promised support by most of the other 35 members in this country that also have this condition. She was overwhelmed by their kindness and offers ofhelp.

Most importantly, Ashton has me. This is not a condition that is unfamiliar to her as she has seen me live with it for a while now. I'd like to think that will in some way help.

I've often said that our life is in God's hands. I firmly believe there is a reason for all this and that HE knows what is best for us. My diagnosis and my various conditions have brought out qualities in me I never knew I had. I'm sure the same will happen for Ashton. Everything certainly happens for a reason.

Thank you for continuing to follow OUR story. I still can not get my head around the fact that when I started this blog, it was about me and my journey. I never, ever in a million years expected this twist to occur.

It helps so much to share the story. Please understand this is therapy for me and will continue, with my daughter's permission when necessary. I respect the fact she is an adult, at all times. I am also aware of the impact on my other daughter and husband and word my phrases carefully.

Please continue to pray for us. 1 in 200,000 and we have been struck twice.

Heads up and best foot forward.

Till next time...xxx

FESTIVAL OF ASHTON

So it's Sunday afternoon and I am having a lazy time. Last night a group of us went to see Ciara in her production called "A little rain must fall". It was lots of fun but with a message to take away about risks and consequences . I loved the colour, the activity, the loudness and the general storyline. The production is part of the "Perth Fringe Festival"and because there are so many acts going on, Ashton and I are going back tonight to see another production. We're actually going to see a comedian because I think before this week starts we  need a good belly laugh.


So let me catch you up on this family's sagas. This week as I've mentioned already is Ashton's  21st birthday. Her birthday is on Thursday and her party is next Saturday. We have approximately 90 to 100 people coming and it is going to be a fantastic night.

Only one thing stands between today and the rest of the week. No, it's not the fact that the uni year starts tomorrow. No, it's not the fact that some people still have no idea what to wear to the party. It's all about the fact that on Wednesday her surgery has been brought forward. What the hell!

You might remember that she still needs another operation. There is still some fistula in her jugular vein and the doctor (please bow) wanted to get her back into theatre as soon as possible to finish the procedure. The original date scheduled was March 20 and though it was a bit of a distance, we sort of got used to the idea.

Which is why we're all a little in shock that the procedure has been moved to Wednesday 25th February. She was given the option of saying yes I'll have it on the new date or no keep March 20. Rather hard call to make isn't it? Whichever decision you make it is full of negatives and positives. We all eventually decided health must come first, so she has opted to have the surgery on Wednesday 25th and will therefore be waking up in hospital on her 21st birthday. Never in my wildest dreams did I see my child waking up in a high dependency unit on her 21st birthday after her 15th major procedure. She has told the doctors that she expects flowers and cake. The bets are on as to whether they will follow through.

Just to see a smile on her face, Mark and I have already given her our birthday present. If you are not on my Facebook list you will not have seen these photos so I will include them because they have made made a lot of people smile and a couple cry. It's just so nice to see her happy.

We are so hopeful that this procedure will be the last BUT all we can do is hope that this will be true. This June it will have been two years since her diagnosis. That's a huge chunk out of her life and out of ours.

See you in the hospital.

Till next time… Xxx

NOT A POET AND I KNOW IT

I want to scream

I want to shout

I want to let frustration out.

I want to cry
I want to yell
I WANT MY DAUGHTER TO BE WELL

I want some things to go our way

I want to have a peaceful day

I want to find a lucky clover 

I want this nightmare to be OVER! 

Ok. No need to tell me I'm not a poet. I know! But it's the first thing that came out when I put finger to ipad. I am frustrated beyond belief because I had such hopes for Ashton returning to theatre this Friday. I had high hopes for a little bit of finality, a little bit of closure. But if was not to be. There are not enough beds available and no room on the lists for the procedure to happen this Friday.

So, there will be more waiting and more hoping and more praying that her current good health stays with us. We will distract ourselves with thoughts of her 21st party which is scheduled for the end of this month. And I will distract myself with menus, balloons, gifts, cake and an increasing guest list. This is going to be a great party, not just for the birthday girl but for all of us. Everyone on both sides of the family needs a good party.

Waiting is not something I'm accustomed to when it comes to health issues. Luckily I have always had private health cover and been able to choose my own specialist and be seen quickly. But Ashton's treatments have been in the public system because for her condition that's the best place to be. And so we are constrained by lists and budgets and beds and availability of staff etc. It's not fair is it? It's bad enough having any medical condition, without having all that put on you as well. I wonder if people who allocate budgets have ever had to wait for medical treatment before. Bad enough if it was for me...hell that it's for my child. And double hell if that's the only system you can afford to be seen under.

The husband has returned to Geraldton to replenish the bank account. It's hard being separated like this but Ashton can't drive herself at the moment and so I stay. Ciara starts university next week! Sound the trumpets and blow the horns. It's going to be another big year for my budding actress as she undertakes a certificate 4 in musical theatre at WAAPA - the west australian academy of performing arts based at Edith Cowan university.

Till next time...xxx

ST

GIVING PLEASURE TO OTHERS

There is a cute little shop in this city called " Sugarplum Sweets" which makes lemon meringue cupcakes that are to die for. The girls and I went there for afternoon tea and I had one which had just been made. Gooey meringue, tangy lemon curd  and cake so fresh it collapsed in my hands and was shovelled straight into my mouth. I was in heaven.

The ability to create something, edible or otherwise, which gives pleasure to people is a gift. This morning I had breakfast with one of my oldest friends Anna. She is one of the most talented people I know. Not only is she an experienced teacher, she is also a published author of plays and songs for children. She has recently been commissioned to write a school song for a new college in Perth and this will be her third time doing such a job, such is her talent.

My big thrill today was to find out that an online Canadian chiropractic magazine had listed my blog under Arts and Entertainment. I am honoured that my writing is entertaining enough to receive this honour, even though the subject matter can be quite tense at times. Maybe it's an omen - first an online magazine, then a book publisher. Watch out Oprah and Ellen! Regardless, I am pleased that my writing gave sufficient pleasure to someone to be chosen.

http://paper.li/DrRichardKjaer/1313554978

And then there was the radio announcer, Ben Fordham, who responded to Ashton's tweet to ask his listeners to pray for her in the lead up to her 14th surgery on Friday. Such a simple task, which when completed gave her such happiness and pleasure and filled my eyes with tears of joy. He could have ignored it, but he didn't.

It really doesn't take much to make people happy and give them pleasure.

My greatest pleasure this week would be knowing that Ashton's surgery is successful. I pray for God to guide the doctors' hands and for our gift to be her improved health.


Till next time...xxxxxxxxxxxx