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

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

ASHTON ACT 2

So, yesterday was a very,very long day. We waited eight hours before Ashton was taken to theatre. The delay was a giant aneurysm in another patient, so we had no option but to wait and exercise gratitude that we COULD wait.

Finally, at 3 o'clock she went in for what Dr HS called Ashton Act 2 ( funny bloke), and Mark and I left the hospital and went home for a nap. Well we tried to nap. I just stared at my ipad screen and counted down the hours. Eventually seven hours later the doctor rang. I will never understand how doctors can perform for such long periods of time.

He managed to remove most of the fistula and it's now downgraded to low. She will be returning to theatre soon for him to finish it off. To quote him " I'm not taking any chances on it regrowing". This is music to my ears because I want the bloody thing gone. She has a 21st birthday and a new uni year to deal with!

So we walked in to the high dependency unit this morning expecting to see someone looking somewhat washed out. Of course that didn't happen. She looked amazing and alert, tired but happy. That's how you recover folks! Her blood pressure is a little low, other than that she looks very well. My child is just amazing.

And now I want to say thankyou to everyone for yesterday's support. Please keep the prayers coming as there will be more procedures and she will need lifetime monitoring. I asked for a circle of prayer around her and we got that AND we could feel it. As Ashton was wheeled into theatre she said she felt calm and peaceful.

Apologies to those on my facebook page who have already seen these photos. They're all I've got at the moment and I just wanted everyone else to see her happy, well face.

Love and hugs.

Till next time...xxx

REACH OUT AND TOUCH

I hate to admit it but all of a sudden I'm sort of glad that my book was turned down last year. Why the change in heart you may ask? Well ...simple...what I'm now writing is already so much better. Sometimes I'm finding myself totally engrossed in the stories, so much so I forget I'm one of the leading characters. I guess it's surreal what this family has been through in the last ten years.

During my writing something has frequently crossed my mind. When someone you know has an illness or is going through some misfortune, I have always felt that making contact and offering help is the proper action to take. But what happens (like in our case) where our lives are a nonstop barrage of illnesses and misfortunes? What are people supposed to say or do then? I'm acutely aware that people must find us a bit hard sometimes. What do you say to us? What do you do for us? I have found in the last few years that its too hard for some people and they simply start to move away from us.

I know that often they move away not because they no longer care but because they don't know HOW to care the twentieth time round. OR they are scared of saying or doing the wrong thing. And I suppose scared you should be because in these situations emotions are often fragile, patience is limited and thoughtless comments are not easily tolerated. I myself admit to distancing myself from those who say the wrong thing at times when I have been at my lowest.I miss the company of these people but I don't miss their lack of empathy. Only  time will tell if those friendships can be salvaged, but at this rate too much water will have passed under the bridge for this to happen.

The correct thing to do when people are going through ongoing drama is to stay in contact. I emphasise this is my opinion but its one based on considerable experience. But there are some guidelines here, an etiquette which needs to be observed. No matter how good a friend you are, immediate family must come first. In our case the husband and I have nine siblings between us. Add in grandparents and our other daughter (who is priority number one) and you'll understand how hard it is to maintain contact with other people when a situation is playing out.

So what can you do if you find yourself in this situation? Firstly, do not take offence to any lack of contact from those experiencing the drama. Appreciate how physically and mentally exhausted they are. It is your job to keep in contact if you value the friendship - text, send an email, leave the occasional message on Facebook, send a card, drop over a meal in crisis times, offer to do shopping...you'll think of something.  It's not hard!

And I'm not sure if you know this or have experienced this yourself but sometimes the period soon after coming home from hospital can be just as hard. I think you cope during the drama with adrenalin and then it's over for a while and you crash. That's when a visitor who turns up with a bottle of wine or chocolate and company can be such a help.

I really never set out to write this but now it's done I hope it helps someone. Next time someone has a death in the family or is going through a medical drama, make contact. Reach out to them in whatever way you can. Do not say " I'll call you when everything's over". For some people ( like my family) there is no end date. Reach out now. Who knows? You might make someone's day.

Till next time...xxx