An Update

I thought I would give a general update into my life since it is a while since I've written about general stuff. We live in a high set house with the laundry situated downstairs and this is a very real issue for me as there is no way I can make it downstairs carrying a basket full of laundry and then back upstairs again. So Brad has been doing all of our laundry and I just put it away when its done. I hate this, I hate that I can't run a load of knickers when I'm getting low instead of having to wait till Brad gets home from work to do them. Therefore we decided to re-do our bathroom; it had a separate shower and bathtub with a half wall dividing them so we got my ex-husband Michael in to do the work and he built the dividing wall to full height, relocated the shower over the bathtub, ripped the old shower out and built this into a laundry cupboard and re-tiled all of the walls and the floor. The job has been taking much longer than we originally thought but its nearly finished now, yay! I can't wait to get that little bit of independence back again.

Brad has been working really hard lately, he's been working full time, running his free group training classes, working with private personal training clients and helping Michael to do the bathroom. Its a full-on load and I admire him so much for what he accomplishes. Yesterday Michael called in to meet the electrician and brought his two young children with him, the little boy was tired and Brad had worked night shift so he and Brad had a nap on the couch. The little one is difficult to get to sleep so I was incredibly proud of Brad when he managed to pat him to off to sleepy land. Teddy was exhausted from chasing the two kids so clearly he needed a nap too :-)

Health-wise I am so so. I had been feeling like crap and my Dr Phil was talking another admission but I managed to negotiate a weeks reprieve and I'm feeling much better now. I don't know what happened but I've got clinic again on Thursday so we'll see what happens to my breathers and take it from there. I had been really slack with my counselling coursework but I started to apply my "just this time" principle to it and it is working amazingly well! In my mind I had always thought that the only way to study effectively and succeed at study was to sit down, read the workbook and answer the questions consecutively and to do this for several hours at a time. Well applying my just this time approach I started to do the assigned reading and then only answer one question, just this time, then I would do a bit more later. Well low and behold I have 5/6 finished my next workbook, in a week!! OMG, I have never done a workbook this quickly before and I am absolutely amazed that this approach has worked. I was thinking the other day that it would be practically criminal of me to not use this time while waiting for my transplant to do my coursework, who knows after transplant how long it will take before I am up to doing anything of my former life?? So I am very proud to say that my just this time is really working for me.

So that's where I am up to, physically not fantastic, lots of pain in my lungs but I'm still here. My bathroom is almost done and I'm kicking goals with my course work. And my beautiful fiancee Brad is my rock, as usual.

love

K

I've been feeling very creative lately and so I decided to finally paint the blank canvas that has been hanging in my hallway for 2 years now. It faces a large ornate mirror and according to feng shui, whatever you place in front of a mirror is what will be multiplied in your life, so you should always be careful what you put in front of your mirrors. Hence why it is bad feng shui to have mirrored wardrobe doors in your bedroom!  

The canvas was already painted purple and I decided to paint angels wings because I would like a stronger angelic presence in my life and I wanted to do this as a dot painting for two reasons, one. I can't draw or paint to save my life, but dots I can do! and two. I am half aboriginal and I like that this would be a reference to my aboriginal heritage.

I made my own stencil after printing the outline on cardboard then very carefully cut around it to make the stencil. I then used dressmaking chalk to mark the angel out onto the canvas and finally started dotting away using gold paint I bought from Dollars and Cents for $2 a tube and the end of a pen. I found this to be an immensely enjoyable project to do. To be honest I am not particularly happy with the entire finished product as the angel is off centre, but I still really enjoyed doing it. And Brad loves it, he thinks I am amazing for doing it, so who am I to argue with his critique? lol.

Anybody else felt their creative juices flowing lately?

love

K

Lest We Forget

Happy Anzac Day everyone! Brad, Teddy and I have spent the day together, peacefully in our home, which is what I feel the diggers fought for, our rights and our lives to be lived the way we want to live them.

Thank you for those who fought for us and died for us.

We will never forget.

love

Kylie

Education Schmeducation

When I was in high school I chose the easy subjects, ones that I didn't really have to work hard to pass and this is exactly what I did, no work and just passed, no notable achievements what so ever. I did gain a place at university to study a Bachelor of Teaching - Primary, however this is where I came unstuck and for the first time in my life I had to work to pass. I discovered very quickly that I simply did not know how to study. I had no idea how to take lecture notes, write a university-level essay etc, I was out of my element. As a consequence in my 1 year at university I failed 9 out of 11 subjects and quit university. It was clearly everybody else's fault and not mine. :-)

Twenty years after I graduated from year 12 I am still in the same position, sort of. A few years ago I realised that my lack of any tertiary qualifications had made a massive dent in my self-worth and self-esteem. I know full well that having a Diploma or a Degree doesn't necessarily make you a smarter person, I know plenty of dumb people with Degrees, and it certainly doesn't make you a better person either, but I have always felt a huge disappointment within myself because I don't have a tertiary qualification of some kind. It was because of this that I decided to enrol in a self-paced, external Diploma course to become a Counsellor.

I chose to become a counsellor because a. I've had truck loads of counselling over the last few years and I know the game pretty well by now, lol and b. I love the concept that counselling is based on; the counsellor teaching the client skills to cope with their maladaptive behaviours so they can apply them to any situation. This is what I found so invaluable about my counselling; on any given day I could be taught whatever technique and I would then have this skill forever so I could apply it to a multitude of other everyday issues that crop up in ordinary life.

I chose to study a course that was self-paced and external because in my previous job I was doing shift work and while I had a set roster, I also made myself available for extra shifts when available, therefore if I had of locked myself into a classroom based course I would have not been able to take extra shifts. While I am very ashamed at how long it is taking me to complete the course, I'm not even going to reveal how long I have been working at it, I am proud to say that I am still working on it and I will never give up until I have my own Diploma of Professional Counselling. It is done through a series of workbooks accompanied by a book of readings, so you read the appropriate section in the book of readings then complete the section in the workbook. Once the workbook is complete you send it in for marking; it is returned to you marked either Complete or Not Yet Complete. With each workbook I get back marked complete, it is like I am adding a little brick to my wall of self-worth that I am purposely building.

I am trying to use the most of this time I have at home waiting for transplant so I am really concentrating on getting the work done. I was stuck on one question for months and I was so angry with myself when I finally rang the Institute and found out that you can get a tutor to work through questions with you. Doh! I had no idea that anything other than the phone based student helpline was available. What's my lesson in this? To ask for help when I need it, not 5 months down the track! lol.

love

Kylie

Organisation

People often ask me how I keep all of my treatments and medications organised and I must admit that this is something that I constantly work at. Two things that I learned about myself a long, long time ago is that I am a naturally lazy person and I also have a terrible memory so my first organisation strategy is a diary.

1. Diary - When I started high school we were all required to have a students diary with a week to a page so we could write down all homework to be done and when assignments were due etc. I did this faithfully and found that it really worked for me. My ex-husband Michael and I met and got engaged when I was 16 and he was 17 and we moved in together when I was half way through year 12. Basically I have been running my own household for 20 years now and I have always had a diary. In it goes all clinic appointments, notes for things to discuss with my Dr Phil along with regular everyday stuff like birthdays, meeting times etc. This is truly the bedrock of keeping my life together, I honestly don't know how people get anything done without some form of appointment diary.

2. Medication containers - I get a months worth of medication at a time from the pharmacy at the Prince Charles Hospital. There are bags and boxes of medication, I certainly can't carry it so Brad picks it up for me. I bought 4 seven day medication containers that have am and pm compartments. When I get my medication home I get the 4 containers and distribute the entire months worth of medication into these containers and I keep one container, containing a weeks worth of medication, on the dining table for easy access.

3. Doubles - Now this is to address my laziness gene! For frequently used equipment and medication I keep doubles in another part of the house. For instance my nebuliser is in my bedside table (inside the drawer with a hole drilled in the back for the cords so it is all nice and neat) and this used to be the only place that I had my myst. There I also keep my 2 puffers and a nasal spray that I have after my myst. I found that if I was running late I would go without my myst rather than sit on the bed for 15 minutes getting nothing done. I do however, religiously check my email every morning when I first get up, so when I was given a second nebuliser I placed it in a drawer in my study so it is next to me while I use the computer, along with doubles of my puffers and nasal spray. This way I can have my myst and puffers while I check my emails. I also keep a container of my digestive enzyme, creon forte in my bedside table and in the drawer in the study as I quite often drink my mega-calorie shake that Brad makes me while I am either not feeling great and sitting up in bed or while using the computer. I have to take the creon forte with meals and drinks so having them on hand on the dining table, in the bedroom and in the study is incredibly handy.

4. Hospital bag - A while ago I did something that I had always dreamed of doing, I bought a 3 piece set of matching luggage; the large suitcase, the overnight bag on wheels and the beauty case. It took me ages to pay off the layby but it was so worth it! I keep the overnight bag on wheels permanently packed with what I would need for a 2 week hospital stay. Since I am in so frequently I have developed a "hospital wardrobe" t-shirts and 3/4 length stretchy pants for the day and singlets and sleep pants for at night. I also have packed 14 pairs of knickers, slip on shoes and a writing pad, envelopes, a pen and stamps. This is so good for the times when I go to clinic and I am not expecting to be admitted and I can just tell Brad to get the hospital bag and he doesn't have to worry about what to pack.

So this, my dear readers, is basically how I keep my life organised. I anticipate that for me, organisation will be the name of the game after transplant; with so many clinic visits (twice a week at first) and a plethora of new medications to learn, I think I will be relying more and more on my existing system. Anyone else with interesting organisation tips that they think I could use?

love

K

The Choices We Make

Since this whole transplant thing has started, the thing that has weighed most heavily on my mind are the changes I will have to make to my day to day life after transplant and feeling scared that I won't be able to adhere to the regimen necessary to stay alive. Well I was watching "The Biggest Loser" last night, I love the politics between the contestants, and one of the trainers said something that suddenly made it all click for me. Shannan was giving his two contestants a pep talk and he said that success is a series of small, good choices. It was like a light bulb went off for me. I find that I very easily feel overwhelmed when faced with a large project or responsibility so over the years I have developed a strategy to deal with this: breaking the project down into small, manageable pieces then tackling them one at a time. For instance when I first started my counselling course I received my first lot of workbooks and was hugely overwhelmed at the amount of work in store for me, so I broke it down into small, sometimes ridiculously tiny steps such as cleaning my desk, reading the introduction page to the workbook, starting the first section in the Book of Readings. It might seem silly but without this strategy I would feel so overwhelmed and anxious that I would probably just worry about it and not have started the course at all, 3000 odd dollars down the drain.

So when I heard the trainer Shannan saying that success is a series of small good choices, I totally got it. Instead of looking at the huge lifestyle choices I will have to make after transplant, I will look at them as small, individual ones just this time. For example I feel completely overwhelmed to think that I have to exercise basically every single day for the rest of my life after transplant, so I will forget the "every single day for the rest of my life" bit and I will replace that with "I will go for a run now." Another example is coffee; I love it and drink too much of it, as is evident by the discolouration of my teeth. Next time I find myself reaching for a cup I will have a glass of water instead, just this time. I realise that this can't work every time, sometimes I may really want a cup of coffee instead of water and I will go ahead and have a cup of coffee, but if I look at it as "just this time" then it is far less scary than "I will never drink a cup of coffee again in my life."

I know to some people this might seem like a simplistic way of looking at things, but what is wrong with simple? I don't have to carry the weight of exercising every day, eating right every day, taking all my medication every day, FOR THE REST OF MY LIFE. Instead looking at it as just this time I will go for a run, just this meal I will eat healthy, just this time I will have all of my nebuliser even though it is taking forever! I feel like I have had a huge weight lifted off my shoulders. Wow, who would have every thought that reality television could help change someones life? lol.

love

K

Oh dear................

I had a great day today. I woke up feeling pretty good so I decided to check out a new shopping centre across the other side of town. I had a pleasant time and bought a new cd, Janis Joplin. Now one of the very pleasant side affect of putting on weight is that some of the weight has gone to my boobs, they are now in fact quite gorgeous, and I was wearing a button up shirt. Driving home I was grooving away to the music, dancing in my seat with my oxygen prongs in and I noticed a few people looking at me whilst sitting at the lights. Since the music was kinda loud I didn't think anything of it. 20 minutes driving later I looked down and saw that my grooving with the music had actually caused the seat belt to pop the buttons open on my shirt and I was sitting in broad daylight, driving along in a bright red car, music blaring, with my super pumped-up boobs in a push-up bra exposed for all to see. Oh dear..................

love

K

CF Clinic

I thought I'd describe for you all what it means to go to clinic. I have been going to clinic every two weeks since I last came out of hospital but thankfully I will be going monthly from now on. Going to clinic isn't so bad, my amazing mummy comes with me but it works out expensive because you have to pay for parking. Do not get me started on the lack of ethics it takes to charge people to park in a hospital where they have no choice but to go. Profiting from othere people loss is what I call it! Anyhoo, anyhoo.

So we get to the Prince Charles Hospital and there is a "terrific" new check in system that in reality takes 3 times longer to do what used to take a few minutes. After checking in you wait until your number gets called to the desk then you are told to get your height and weight done by the volunteers. For those interested I am 162cm tall and 47.9kgs. Then you line up again to be told to go the breathers. So upstairs mummy and I go where we wait in line with a waiting room full of people to be called in one by one. Having a breathing test means breathing into a computerised machine in a certain way and at certain speeds; this measures how much air your lungs can hold, therefore calculating how much air your lungs can't hold probably due to damage or infection. This is all documented in your chart, a file folder with all notes, test results etc that the hospital holds and you are also asked to provide a sputum sample in a jar. I have plenty to spare so I'm never stingy with providing sputum samples!

Then we go downstairs again and line up to give the packet containing my chart and sputum sample to the admin lady then we make ourselves comfortable in the clinic waiting area until we are called in. You rarely have to wait more than a few minutes because the cf nurses are so on top of everything and they know who to expect at clinic therefore they keep an eye out for who is in the waiting room. Mummy and I are then walked into an office and one by one we see each of the cf team to discuss a particular area of my care. For instance this Thursday I saw Angela the dietitian because I have been having trouble with my nasogastric feeds. Then I saw Robyn the physiotherapist to discuss my oxygen generator and exercise tolerance. Next came Anne the social worker to talk about some insurance stuff and then finally my favourite doctor in the world, my Dr Phil. I have been seeing Phil for around 16 years and I couldn't possibly be in better hands. A couple of times I have contacted the clinic urgently, so ill I thought I was going to die and after admitting me I have bounced back, all under the guidance of Phil. I know that I owe my life to him and the rest of the cf team, I don't doubt that for one second.

After seeing Phil mummy and I put my prescription for my medications into the pharmacy, there are around 25 medications for a month so they will take over an hour for them to be ready. Lastly mummy and I go back upstairs again to see Vanessa, another incredible cf nurse, to get some more nasogastric feeding tubes then we go home. Phewww! I was going to say that it sounds worse than it actually is but I have been doing this on average every month for 36 years now so to some people it may be pretty yuk! Apparently when I was a little girl at the Children's Hospital other children would get bored waiting and start misbehaving and running about, but I was happy to just sit in my stroller and watch what everyone else was doing, mummy is very proud to tell everyone what a good little girl I always was.

love

K

Old Friends and Karma

Recently I was catching up with an old friend whom told me how wonderful it was that two particular girls that we went to school with were still best friends all these years later, as close as ever. Whilst I know that I should be happy for them and wish them well, the thing is that these two particular girls, along with a few of their "followers," bullied me every day of high school and made my life absolutely miserable. Did they know what they were doing at the time? Yes, I believe they did, very much so. Their behaviour was very deliberate and targeted at me; at the time a chronically shy, introverted girl who couldn't look people in the eye. I was a classic target for bullies both male and female; I was not an attractive teen, I had frizzy hair, bad skin and a mono brow, and I had huge big boobs so these particular girls would bully me over how I looked and the boys would tease me mercilessly because of my boobs.

On a good day I would go to sleep at night thanking God that he had made me invisible that day and no one had threatened to bash me or yelled obscenities at me as I walked past them. Even though no one ever actually bashed me up, on a bad day I would pray to die in my sleep so I wouldn't have to go through another day of being told how ugly I was, how pathetic I was etc etc. I graduated from year 12 in 1992 so anti-bullying reforms were non-existent whilst I was being educated and it still blows my mind when I realise just what a devastating impact these bullies had on not only my day to day life growing up but the long term implications as an adult. These days being bullied isn't even an option in my life, I now have the confidence and self worth to stand up for myself however it was only a few years ago when I worked in retail that I was bullied by my supervisor and I can honestly say that being treated that way, I felt like I was 15 years old again. It had such an impact on my that driving home from work one day I was crying so hard that I actually reversed into a pole. Apparently studies have shown that people who were bullied as children are far more likely to be bullied as adults than others.

I'm not stupid enough to think that these two women haven't weathered their own storms through life since high school, everyone has a story, however the vulnerable part of me hopes dearly that karma catches up on these two eventually.

love

K

Today's post

No post for me today, I don't feel great. Even typing is too much this morning.

Hope everyone had a great Easter.

love

K

Happy Easter

Today I had the pleasure of spending time with a friends 2 year old daughter and taking her to my family celebration. Ironically she and I walk at roughly the same pace but she can run and I can't! It was so sweet to hear her giggle as Teddy licked her on the toes and to walk barefoot in the grass, feeling how cool and soft it felt beneath my feet.

The little one loves dogs so my parents mini foxy Ozzi got lavished with attention all afternoon; playing chasey, tug of war and sharing bub's lunch. I think Ozzi will sleep well tonight from all the running he did today.

Anyhoo, Happy Easter Everybody, I hope you all have as lovely a weekend as I am having.

love

K

Teddy Bear Lowe

It was with heavy hearts that Brad and I admitted that Teddy's fur had become so matted at the base that we had no choice but to clip him to almost skin. We hated doing it however the matting was at least a centimetre thick and we couldn't brush it out :-( We've had him clipped before and because he is so big it costs between $80 and $150 so we bit the bullet and bought our own pet clippers. Brad and I clipped him ourselves on Sunday night and we loved it, it gave me the same satisfaction as peeling sunburned skin, cool! Both of our backs were absolutely in agony afterwards but it was amazingly easy, never again will we pay someone else to do this job!

Teddy was unbelievably well behaved during the hour and a half that it took us, a few times he tried to get up, he hates his paws being touched at the best of times, but over all he was excellent, I am so proud of him. Unfortunately Teddy loses his good looks when he loses his fur, every bit of cuteness disappears and he looks like a skinny skinhead thug! Poor Teddy, his mummy still loves him!

love

K

The Hypocrite in Me

I am currently reading Ben Cousin's biography and I was all set to write an angry, bitter post about how he was gifted with a healthy body and is ruining it through his drug use while there are so many out there, such as myself, who are fighting for their lives. Then I realised what a hypocrite I was being. It was only 15 or so years ago that I was drinking myself stupid most nights and my health was the furthermost thing from my mind. I held my 21st birthday party in my then home with my ex-husband Michael and my family were distraught at the amount of empty vodka bottles I had "decorated" the living room picture shelf with; there was real worry in my family because we have a history of alcoholism. Ironically it was vanity rather than self-preservation that made me stop drinking, alcohol made my skin flare up and my face looked like permanently sunburned and lobster-ish so that's why I stopped drinking. So how hypocritical would it be of me to give Ben Cousins, a confessed drug addict, a huge spray about valuing his body blah blah blah, when for years I didn't value my own?

My goodness, for so many years I took my health for granted. Yes I had cf, but it had such a small impact on my life that I spent very little time dwelling on it. Apart from having my medication, I've always been pretty spot-on with that and doing airway clearance when I needed it, I had really neglected those extra things that could have made such a difference now. Such as exercise, when I could go for a run it was just something that I could do, I never approached it as a tool to give me years of extra life therefore something to be done regularly. The same with swimming. For one entire summer Michael and I got up at daybreak and swam laps at the local pool 5 mornings a week. My breathers were improving and we both loved it, but then we just never got around to it again the next summer.

I guess I am going through something that most pre-transplant patients must go through; looking back and seeing all of the things they should have done differently. Eating right, minimal alcohol consumption, exercise, they are all wonderful things that every human being should do, however for someone with cf doing these things are imperative rather than just a good idea. If I could sit a young Kylie Lowe down and give her some advice what would it be? I would tell her that every time you do something good for yourself now, it will be worth it, for it will give you an extra day on earth without the prospect of transplant looming over you. And I would tell her not to get married so young, no matter how in love you are. Oh, and most importantly don't get your hair cut short on a whim, it will take years to grow back!

love

K