Medical Entries:
17th April 2001

Well today was the big day. To find out whether I have Cystic Fibrosis from the 2nd opinion. We left at 1 pm, stopped off at McDonalds first, my request.lol…Arrived there about 1.50pm…. handed in my CT Scan results to the girl (T) behind the desk and sat down and waited. (Normally b4 each visit to the quacks, you have to undergo a short lung exercise, breath into a tube for 15 secs while it does a little diagram on the computer. (Fascinating little thing, but a hassle to do). It was 2.10pm and the guy behind the office doors, came out and called me to do this exercise. I told him that I am not here to do the lung exercise, only here for the results. He said it was ok. We waited and waited, and then T came out and told us that she is missing a test from Pathology. It was the POO TEST. While T was on the phone to them, I was using the mobile to call my local GP, hopefully they sent a copy to her, but unfortunately they didn’t. Then T handed me her phone to talk to the girl at pathology. I nicely told her, that I refuse to take the test again; I am here now waiting for that result, which you lost. Handed the phone back to T, smiling. By this stage I was so pissed off, it was 3pm, and I was bored as. My Sister was also pissed off as well. At 3.10pm T came out and said the found the results…The Dr. had them. This made me more PISSED OFF. Finally we were seen, at 3.15pm, after another patient snuck into his office for 5 mins…. We sat down and this is what he said which made my heart drop and fire coming outta my ear holes…The main blood test, the one that I have been hanging out for, which was a 6 week waiting period. The test was inconclusive. He is 85% sure that I haven’t got Cystic Fibrosis. But that’s not 100% is it? My sister is rapt about the 85% but pissed off that I have do to more fucking tests. Wait till you hear the NEW TESTS ….yup………

The new tests: involve another sweat test, the 2nd one – have to do three of these, that’s on the 26.4.01, at 9.30am…An Endoscopy on the 27th April, at 9.30am.At the beginning of the procedure your throat will be sprayed with a local anaesthetic and I will be given a sedative by injection into a vein to make me more comfortable. An endoscopy is a flexible tube about 9mm. in diameter. It allows full colour inspection of the oesophagus, stomach and duodenum. It also allows biopsies to be taken from the small bowel and other areas. The procedure will take between 5-15 minutes. Into your guts. I wasn’t going to do this at all, didn’t like the sound of it. But as soon as T mentioned that you’re “knocked” out, I thought why not, a big giant nap…lol. Just hope I don’t fart in bed while I am snoozin’ away.

What is “upper gastrointestinal endoscopy”? Endoscopy involves the use of a flexible tube to examine the upper intestinal tract including the oesophagus, stomach and duodenum. The procedure is commonly undertaken if your doctor suspects that you have an ulcer, or inflammation/abnormality of the esophagus, stomach or duodenum.

Medical Entries:
27 April 2001

Well I got in there, left home about 8.30am, my eyeballs were hanging out. All I was thinking was my “nap”. LoL. My father dropped me off, and upstairs I went. Had to go to the admissions office, to say, Hey I’m here…. Did all there paperwork, then I had to travel to the next floor. There were 4 other people in the waiting room, when it was my turn to go in, I had to tell them my medical history (again), and then I was ordered to lay on my side kind of in a foetus position. They inserted a needle in my hand, where the thin layer of skin is. I must’ve dropped off, after they took out the needle. Two hrs later I woke up, sat up, and the room was spinning…the nurse rushed over and asked if I was ok. I said I was. No tea or biscuits. lol…I was sent straight away into the waiting room, my father wasn’t there yet, so I snoozed in the waiting room for another hour, until my father woke me up. I felt that rested, and thank god I didn’t remember the incident.

Medical Entries:
15th May 2001

My father took time off work again to drive me the Hospital to FINALLY get my results. First I had to complete an hour of a Lung Function Test, to see the capacity of my lungs. Several test of blowing hard into a tube, sucking in then quickly out. And it wasn’t a piece of cake either.lol. Managed to complete the test in 30 mins.
Went upstairs and sat into the waiting room for my 3.00PM appointment. At 3.45 PM, I went up to the office and asked if the doctor was running late, as my appointment was for 3.00PM. She flipped through the appointment book, found my name and told me that my appointment was for 3.30Pm. After a small “discussion” about the appointment times, I was seen at 3.45Pm. No news is happy news I guess.

**RESULTS**

The Doctor thinks the reason I am not putting on weight is because of this ulcer. Someday I don’t feel like eating. Instead of having 3 big meals a day, as a child I used to have 6 small meals during the day. To others it’s a strange way to pig out, but hey who cares. Its good to eat when I want to eat, no matter what time it is. My daughter, 19 months, is the same. She will have little snacks during the day, to make up for her 3 big ones. My son on the other hand loves his 3 meals a day, with some snacks in between…LOL.

I am surprised that the specialist hasn’t put me on any medication for CF, and he wants to see me in 2 months for another lung function test, and wants me to get my children tested within the next 6 months. My sister, Sandra, had decided to go for her own sweat test to see whether she has it or just a carrier. Some days I feel shit and that tired; it kinda drains all your energy out of you. I just hope that this ulcer is the cause of all my problems, once that is cleared up I'll be healthy and maybe have more to “grab on to” LMAO.(-means Laughing my Ass Off)

I asked the specialist to send the paperwork down to my local GP, so I can ask her more, and she will tell my about my condition, like it is. No bullshitting around.

Medical Entries:
14th June 2001

Well, I went to my local GP last night, and found out a few things. My Bronchiectasis and Cystic Fibrosis is classed as deteriorating, and so is my Marfan’s syndrome. At the moment I am suffering from another Lung infection and just staying neutral with this cold. I have the occasional runny nose and cant complete a full sentence without coughing. I asked why wasn’t I on any enzymes like all the other Cf patients, and she said there isn’t anything wrong with my digestive system. They put it down to the ulcer is making me not put on weight. So is this a 30-Year-old Ulcer?
I mean all my life my weight has been up and down like a yo-yo. But my bowels are the same; as soon as I finish eating I wait 5-10 mins, and empty it. If I don’t go, I suffer from really bad cramps and pains in the stomach, and they last until I do go.
Also there is a possibility that my son has Marfan’s syndrome, but I am not sure. When I was younger I use to suffer from really bad leg pain, it was like a cramp but it wasn’t, I guess it was more of an “aching” sensational, and my mother said I use to say that my leg was sore. Sometimes they were that sore, that it would make me cry. The Dr’s used to put it down as “growing Pains”. My son, starting getting them as soon as he could talk. The Doctors I took him too, as put it down as “growing Pains”…. Yeh Growing pains my ass!

I can’t see the specialist at the Alfred for a while, as the Legionella bug has broken out in the Alfred hospital, and a few people have died, and some are critical. It travels through Air conditioning - charming huh? The symptoms are tiredness, coughing and fever (chills). I don’t need another one added to my list. So until that has the all clear, I can’t see Dr. R to get a referral for the sweat test for my kids. Another waiting period.
Well the disease lasted about 2 months. All it swell in that department.

Medical Entries:
16 October 2001

While I was seeing Jasmine’s eye doctor, and at the end he suggested that I a doctor there, regarding Marfan’s as they know about it. All I need is a referral from my local GP and I can virtually get seen to straight away. So its saves me waiting until December 3rd, for my first trip to the Marfan’s clinic in the Alfred Hospital. Which is only open every Monday, whereas the one at sunshine is open 5 days a week. Slowly and surely I am getting somewhere with all this. It’s all like a major roller coaster ride.

During the month of June/July my website was advertised in the CF red roses magazine. Here is a picture of it, as i was over the moon.Even thought they stuffed up the URL. At least my email addie is correct hey! lol.

Personal Entries:
2nd August 2002

My wish list number 2 arrived today. I am 33 years old, and never been to a footy match. This arvo, I am going with my boyfriend’s sister-in-law, Elena and her mate Emma. I have been looking forward to this day and just my luck the sky is cloudy. I hope it doesn’t rain. The two teams are Nth Melbourne and Geelong, at Geelong’s home ground.

Being a non-sporty female, I admit it was exciting. Before we went inside to watch the game, we saw JACKO pull up beside us and chatted to some guy who was getting in the car. Jacko was telling him to watch the trousers on the back seat. He is an ex Geelong player, and also the ex energizer bunny ad guy. I didn’t holler and curse at the poor Geelong players who keep stumbling over the ball, I watched the game and people watched. Emma was a Geelong supporter and Elena is Nth Melbourne. The heat was on; beside us it was mixed supporters. The slanderous remark are on as it flowed out of ones mouth. The guys beside us keep looking and laughing at Elena’s vocal chords. LoL. “Go the Roos”….....
I wore 2 jumpers and 2 coats, and I was quite toasty. I didn’t get any headaches, just a stiff leg here and there in the joints and a massive backache from standing for 3 hrs….

Word of advice though, never got to the toilet on half/quarter time, better to go 10 mins before or after the game. That way the line isn’t 13 KM down the street. LOL
I was amazed how much the players “jump” each other, like wrestling I think it more for the show. To attract more people.

Relationship Entries:
23 September 2002

My relationship isn’t going as well as what it was. There seems to be a lack of communication when I try to talk to him, but his eyeballs and mind is busy concentrating of the cartoon network on optus. Somehow I just can’t sit there all day/night and watch cartoons….
We have been doing a few things together, taking the kids on outings, some days it has been a blast. There are certain things, which I am “forbidden” to discuss. As it pisses him off and refuses to talk about it. He says I don’t talk to him, when I do talk to him; he gets shitty after 5 mins, says, “I don’t care” and walks out the room. I guess that’s why with an argument with anyone I tend to ignore it, as I really don’t need the bullshit. As it all leads to stress, then an ulcer and its something I don’t need more of. Especially a double dosage.

Diary Entries:
25 September 2002

I think I lost 2 kilos in over the past 2 weeks. I went to Bingo with Darren’s sister in law’s Alena and Shelly, on a Tuesday night, on the following Wednesday morning I started off the day with a light splurge of GASTRO.
I was well enough the following week to go again, and the Wednesday; I got FOOD POISONING, as alena got it as well. We had the same Dip. I went to Bingo last night and didn’t eat a thing. I didn’t wanna get sick again.

Personal : Death in Family
20 December 2002

Friday Morning I spent all day at the nursing home, as my grandmother wasn’t going to make it through the night. She suffered a stroke during the night before, and she was loosing blood from somewhere as the dr’s didn’t know where from, and also had dementia. My parents, Brother and Sister, including myself were visiting her. I felt really terrible at the way she looked; she was on an oxygen mask, and gasping for breath. She wasn’t asleep, nor was she awake. I wondered if my last hours when I die, I will be gasping for oxygen. I also wondered who would be at my side on my passing.
At 11.34Pm, my grandmother died, she took one last breath and slipped away. I wondered if the angels or relatives came to get her. I believe there is a life after death. I hope an angel comes down for me.

Medical : Cystic Fibrosis
7th July 2003

CF – I was supposed to make an appointment in July for my lungs, which I haven’t done. I just feel it’s a waste of time. I go every 6 weeks, and do the same routine, and spend 5 mins with the Dr, to discuss medication. Then I leave to come home. I figured if anything happens I can also go to the Alfred Emergency like last time and seen too within 30 mins. I just have to make myself go, as it’s normally a 2-week stay in the respiratory section. 2 weeks in hospital, hospital food…hospital gowns…Breezy! LoL

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