Well today was the first day back at kindy after the Autumn break. The boys were pretty tired, it was pouring down with rain and it didn't seem all that appealing to go out anywhere. Then the arguing over toys began, and all of a sudden I found an amazing well of energy. I got both the boys in their coats and to kindy in record time (Well, actually I was late but only by a few minutes).
Luckily for me(but not so much for her) one of my younger sisters, whom from now on i shall refer to as lil' one was on Parent help. The boys couldn't wait for me to leave so they could begin playing with Aunty lil' one and their cousin and friends. It was still raining though, and since I don't particularly want to ruin this event monitor by getting it soaking wet, I decided to venture back to kindy rather early so I could get a park close by.
So after participating in tidy-up time I sat down to watch the kids enjoy mat time. It's my favourite part of kindy, getting to watch all the kids dancing, singing and listening quietly to stories. So cute. Today however, mat time was a little early so at the end of the story the teachers began asking questions related to the story that had been read (Ants stealing sugar, eating way too much of it).
"We don't eat sugar every day do we?" The teacher said. Most of the kids said No. Baby B however, piped up "I do!". Oh no, now all the parents will find out my habit of bribing the boys with sweets when they aren't behaving. Luckily for me, a number of other children chimed in insisting they too ate lots of sugar. Good, I could smile and laugh like it wasn't true. I hadn't been found out.
"What sorts of things do we eat for dinner?" Oh no. Put your hand down Baby A. No one can know that this weekend while Mummy was sick we had not very nutritional meals. Not when other children were talking about vegetables and meat and rice.
Ahhh thank goodness. So many children wanted to talk that the teacher didn't get to either baby A or B. A lucky escape.
Once we got out of the rain and into the car, I noticed Baby A looked a little sad. I enquired as to what was wrong.
"I just wanted to tell *Teachers name* that I have donut and chips for dinner. Or Nutrigrain." He said sadly. Thank goodness.
"That's okay Baby A, next time." I promised, while hoping that if there were a next time it was after one of my 'well' weekends.
So for now my secret is still safe.
Except now it's on my blog
Ahhhh frick.....
Monday, April 27, 2009
Sunday, April 26, 2009
Saturday, April 25, 2009
Dilated Cardiomyopathy
So I'm sitting on my bed feeling a little unwell (A little, which is actually quite good) looking at a giant blown up T-Rex which belongs to Baby B, and I realize all his teeth are covered in toothpaste (T-Rex's, not Baby B's). Obviously when I gave the twins their toothbrushes this morning and asked them to bursh their teeth, they took it to mean to brush the dinosaurs teeth. Which is fine, oral hygiene is important. Anyway.
I thought it's time I did another profile on another one of my medical conditions. I think sometimes people don't want to ask, or feel uncomfortable asking, what it is I have. So far I have talked about on of my diagnoses in this post. This is number two. There'll be about five or so in all.
OK, so onto Dilated Cardiomyopathy. This is the condition I was diagnosed with 18 months after the twins were born. I'd been feeling extremely unwell since their birth. I was swollen, was short of breath. I couldn't sleep lying flat because it made me feel as though I was drowning. My heart rate was constantly rapid and irregular. I had lost all my pregnancy weight once I got home from hospital, and proceeded to gain it all back over the next few months, even though I was following a healthy diet and exercise.
The doctors told me it was because I had gained back that weight. It was also suggested I was depressed, and had very little idea of what it actually involved to have twins and therefore my expectations of myself were too high leading to anxiety. It didn't matter that I explained my heart rate was always fast, and got so fast when exercising that I felt as though I would pass out.
So I stopped going to my doctor. I sat at home struggling to do basic things for my children, feeling like a failure as a mother, as a person. I started to think I was crazy, and began to push myself to do all the things I wanted to, despite feeling so unwell.
It was ultimately this which led to my diagnosis. I was doing Tae Bo one morning, and my heart rate went into the 190's. It didn't go back down again. By this point I had serious trust issues with my doctor, and so left it until the next day to make an appointment. At this point, my heart rate had come down. I now had a resting heart rate of 160bpm. Normal is 60-80bpm.
To make a long story short, I was sent to a cardiologist whom conducted an echo and it was discovered I had Dilated Cardiomyopathy. I was also in heart failure.
So that also explained the abnormal liver function tests I'd been having.
The function of the heart is looked at by estimating the EF, or Ejection Fraction. A normal healthy person has an EF around 55-75%. My Cardiologist felt in someone my age a normal EF would be 65%. My Ejection Fraction was 30%. My heart was enlarged and I had fluid accumulated in my lungs.
I was put on a very powerful combination of drugs and was able to come home.
This post has turned into more of a personal story then the informative encyclopedia post I intended! I might leave it at this for now and tell part two of this story later.
I thought it's time I did another profile on another one of my medical conditions. I think sometimes people don't want to ask, or feel uncomfortable asking, what it is I have. So far I have talked about on of my diagnoses in this post. This is number two. There'll be about five or so in all.
OK, so onto Dilated Cardiomyopathy. This is the condition I was diagnosed with 18 months after the twins were born. I'd been feeling extremely unwell since their birth. I was swollen, was short of breath. I couldn't sleep lying flat because it made me feel as though I was drowning. My heart rate was constantly rapid and irregular. I had lost all my pregnancy weight once I got home from hospital, and proceeded to gain it all back over the next few months, even though I was following a healthy diet and exercise.
The doctors told me it was because I had gained back that weight. It was also suggested I was depressed, and had very little idea of what it actually involved to have twins and therefore my expectations of myself were too high leading to anxiety. It didn't matter that I explained my heart rate was always fast, and got so fast when exercising that I felt as though I would pass out.
So I stopped going to my doctor. I sat at home struggling to do basic things for my children, feeling like a failure as a mother, as a person. I started to think I was crazy, and began to push myself to do all the things I wanted to, despite feeling so unwell.
It was ultimately this which led to my diagnosis. I was doing Tae Bo one morning, and my heart rate went into the 190's. It didn't go back down again. By this point I had serious trust issues with my doctor, and so left it until the next day to make an appointment. At this point, my heart rate had come down. I now had a resting heart rate of 160bpm. Normal is 60-80bpm.
To make a long story short, I was sent to a cardiologist whom conducted an echo and it was discovered I had Dilated Cardiomyopathy. I was also in heart failure.
"Dilated cardiomyopathy is a condition in which the heart becomes weakened and
enlarged, and cannot pump blood efficiently. The decreased heart function
can affect the lungs, liver, and other body systems."
So that also explained the abnormal liver function tests I'd been having.
The function of the heart is looked at by estimating the EF, or Ejection Fraction. A normal healthy person has an EF around 55-75%. My Cardiologist felt in someone my age a normal EF would be 65%. My Ejection Fraction was 30%. My heart was enlarged and I had fluid accumulated in my lungs.
I was put on a very powerful combination of drugs and was able to come home.
This post has turned into more of a personal story then the informative encyclopedia post I intended! I might leave it at this for now and tell part two of this story later.
Friday, April 24, 2009
Health Update
So I had my gynae visit last night. I really like my gynaecologist, he'd be my favourite doctor. Not only did he guide me through infertility and then a really rough pregnancy, but he's kind, has lovely bedside manner, and is quite good looking. In fact, my younger sister now wants to come to all my appointments just to see him. Ahem...
Anyway. So the right sided pain is still present, and a repeat scan (That I don't want to talk about except to give the results) showed the typical polycystic ovary. That may be causing the pain, or I may have enodometriosis. The way to find this out would be another laproscopy (I had one before conceiving the boys which came back clear). Most interestingly though, a rather large mandarin sized cyst was found on my left ovary. I was quite surprised by this as the extreme pain is on the other side, so what the hell? Due to my rather rough few years, and given I'm having some arrythmia issues at the moment, my kind specialist would like to give it four weeks to see if the cyst will resolve on it's own and therefore surgery wouldn't be so urgent.
I'm happy with this. I'd prefer not to be rushed into surgery at this point in time. I guess in four weeks if said cyst is gone, we will then discuss managing the pain and when/if they'll do an investigation to see if I have endo.
So overall a good visit. I feel quite lucky to have two extremely competent as well as very kind specialists (Cardio is the second one). I guess I must have met my quota of horrible doctors!
I'm also currently wearing the event moniter. SO far I think I've only had sinus tachy and some PVC's and PAC's, nothing too exciting. Which is good, but also not great as if I had a good run of SVT then we could figure out effective treatment. Not that I want SVT, just i would like this all figured out! I'd like to be able to exercise without fainting. That'd be nice.
Anyway. So the right sided pain is still present, and a repeat scan (That I don't want to talk about except to give the results) showed the typical polycystic ovary. That may be causing the pain, or I may have enodometriosis. The way to find this out would be another laproscopy (I had one before conceiving the boys which came back clear). Most interestingly though, a rather large mandarin sized cyst was found on my left ovary. I was quite surprised by this as the extreme pain is on the other side, so what the hell? Due to my rather rough few years, and given I'm having some arrythmia issues at the moment, my kind specialist would like to give it four weeks to see if the cyst will resolve on it's own and therefore surgery wouldn't be so urgent.
I'm happy with this. I'd prefer not to be rushed into surgery at this point in time. I guess in four weeks if said cyst is gone, we will then discuss managing the pain and when/if they'll do an investigation to see if I have endo.
So overall a good visit. I feel quite lucky to have two extremely competent as well as very kind specialists (Cardio is the second one). I guess I must have met my quota of horrible doctors!
I'm also currently wearing the event moniter. SO far I think I've only had sinus tachy and some PVC's and PAC's, nothing too exciting. Which is good, but also not great as if I had a good run of SVT then we could figure out effective treatment. Not that I want SVT, just i would like this all figured out! I'd like to be able to exercise without fainting. That'd be nice.
Tuesday, April 21, 2009
Monitoring Events
I was feeling irritated today. Everytime I moved, when I tried to help the boys get dressed, when I got breakfast, when I myself got dressed my heart was racing. I decided that this is enough. I made a doctors appointment (Well, Craig did. I hate making phone calls) and decided I am going to go down there until something more productive comes of it then "Let's increase your meds!"
Wow. It only took this one appointment! Colour me surprised, since it took 18 months for me to be referred to a Cardiologist when I was in heart failure. And showing all the classic signs.
Tomorrow I get my very own event monitor! I get to wear it for two whole weeks. Then they'll know whether an ablation would be good, different meds, a pacemaker, basically it'll just give a much better idea of what all these arrythmias are and whether/how they can be treated.
I really hate wearing these. Well, I've had two holter monitors in the past, not exactly the same I hope as those are HUGE. Guess I'll find out tomorrow!
Wow. It only took this one appointment! Colour me surprised, since it took 18 months for me to be referred to a Cardiologist when I was in heart failure. And showing all the classic signs.
Tomorrow I get my very own event monitor! I get to wear it for two whole weeks. Then they'll know whether an ablation would be good, different meds, a pacemaker, basically it'll just give a much better idea of what all these arrythmias are and whether/how they can be treated.
I really hate wearing these. Well, I've had two holter monitors in the past, not exactly the same I hope as those are HUGE. Guess I'll find out tomorrow!
Eskimos "like eating white people"!?
Ok so this article http://www.stuff.co.nz/national/2348856/Kiwi-confectionery-leaves-bad-taste was bought to my attention today by my Mum. I was quite puzzled to hear why it was a lolly which has been around for 54 years, and is quite a big part of kiwi children's childhoods were suddenly creating such a stir.
Whilst I fully understand the shape and name of the lolly has upset the lovely Inuit lady visiting here, and those whom have been sent packets of the lolly, I don't really understand why they would want the lollies banned. I don't mean to be culturally insensitive, I just truely don't understand.
There were a few parts of the article I found to be particularly confusing/amusing. Number One:
It's a lolly people. It has many purposes, perhaps including being an effective parental bribing tool, decorations for a cake, and something one has at kid's parties. I think it's a long stretch to suggest it's purpose is to encourage cannabilism. Or to indeed suggest it's some kind of tool of mockery directed towards those people in the past that leant towards consuming people.
The second part which caught my interest was;
'A Christchurch academic has also called the sweets offensive saying Inuit
friends in Canada likened the popular sweet to "eating white people".'
Really? Like in the same way eating jelly babies is like eating rainbow coloured people? I'm quite confused by all these references to cannabilism. Why is eating an Eskimo lolly any different to eating jelly babies? Gummy bears (those bears are endangered, bad people eating bear shaped candy), or chocolate shaped easter bunnies for that matter? Perhaps I just can not grasp this issue due to the fact these lollies have been around since I was a kid. Actually, since my Dad was a kid and they have never before caused quite a stir. If we're going to ban Eskimo lollies, why stop there? We better ban all things that look or could be construed to look like something.
Like those carmello Koalas and Kiwis for one.
Whilst I fully understand the shape and name of the lolly has upset the lovely Inuit lady visiting here, and those whom have been sent packets of the lolly, I don't really understand why they would want the lollies banned. I don't mean to be culturally insensitive, I just truely don't understand.
There were a few parts of the article I found to be particularly confusing/amusing. Number One:
'She believed it was also offensive because food shortages had been an issue for
Inuit people in the past. "The notion of cannibalism is a real thing."'
It's a lolly people. It has many purposes, perhaps including being an effective parental bribing tool, decorations for a cake, and something one has at kid's parties. I think it's a long stretch to suggest it's purpose is to encourage cannabilism. Or to indeed suggest it's some kind of tool of mockery directed towards those people in the past that leant towards consuming people.
The second part which caught my interest was;
'A Christchurch academic has also called the sweets offensive saying Inuit
friends in Canada likened the popular sweet to "eating white people".'
Really? Like in the same way eating jelly babies is like eating rainbow coloured people? I'm quite confused by all these references to cannabilism. Why is eating an Eskimo lolly any different to eating jelly babies? Gummy bears (those bears are endangered, bad people eating bear shaped candy), or chocolate shaped easter bunnies for that matter? Perhaps I just can not grasp this issue due to the fact these lollies have been around since I was a kid. Actually, since my Dad was a kid and they have never before caused quite a stir. If we're going to ban Eskimo lollies, why stop there? We better ban all things that look or could be construed to look like something.
Like those carmello Koalas and Kiwis for one.
Sunday, April 19, 2009
Single Sentence Sunday
If you find a path with no obstacles, it probably doesn't lead anywhere. Frank A. Clark
Saturday, April 18, 2009
Shout Out Saturday
I was asked today if I could/would do a shout out on my blog. The answer to this question is...
Yes I certainly could AND would! So for the person whom gave me this idea, this post is for you!
My shout-out for today goes to a person whom doesn't like chewy steak, and wishes to remain anonymous. Because this person is such a cool and kind individual, there was some concern that if the name was released it may attract global stalkers. So all I can say is I am very lucky and glad to have this person in my life, my twins absolutely adore them and we always have heaps of fun when we hang out with them.
This person may let me name them in a future shout-out. But probably not :)
Yes I certainly could AND would! So for the person whom gave me this idea, this post is for you!
My shout-out for today goes to a person whom doesn't like chewy steak, and wishes to remain anonymous. Because this person is such a cool and kind individual, there was some concern that if the name was released it may attract global stalkers. So all I can say is I am very lucky and glad to have this person in my life, my twins absolutely adore them and we always have heaps of fun when we hang out with them.
This person may let me name them in a future shout-out. But probably not :)
Friday, April 17, 2009
Learning things about things, and stuff
We've had a busy last few days. Wednesday the twins and I had a great day out and about with a good friend and her two sons, having a yummy lunch and some time at the playground. Lots of fun!
Thursday it was Craig's turn to go to a hospital appointment. He was so nervous, my poor healthy hubby. He forgot to check he had the parking permit for outpatients (Making finding suitable parking really horrific), was nervous we hadn't left enought time to get to the appointment (Doesn't realise no matter when you get there, there'll be a wait) and was very surprised when the doctor told him he'd need to be referred to someone else in the clinic whom specialises in corneal grafting (Doesn't realise you NEVER get in to see the person you want straight off). He has a lot to learn, and I hope he never has to learn it.
The said appointment was very good however, as we learnt Craig is likely a candidate for a corneal graft. He has no vision in his right eye due to a scarred cornea, and this would hopefully give him back most of his sight, albiet may be a little blurred. There is very little risk of rejection, and he'd be in and out of hospital within 24 hours. He'd then get 2-4 weeks off work so we need to start saving up his leave now (If only I could stop getting sick!!)
Unfortunately for me, yesterday was return of the pain day. I have completely weaned off the first med, and I'm still aching all over. Meaning either the DILE diagnosis is wrong, or it's not that drug. Next, I've got severe ovary pain again. I'm about ready to get a knife and hack the thing out myself.
Anyway, that brings us to today. Today was a pain day, I spent most of it in bed and taking lots of my meds. One of the meds caused some palpitations and a run of SVT. Or maybe that's the pain, I can't be sure.
Nonetheless, I have my appointment next Thursday where I should find out gynaecological treatments for the awful ovary. Please let them be viable options for me, the girl whom can't go on birth control and most likely wouldn't be cleared for surgery right now.
Thursday it was Craig's turn to go to a hospital appointment. He was so nervous, my poor healthy hubby. He forgot to check he had the parking permit for outpatients (Making finding suitable parking really horrific), was nervous we hadn't left enought time to get to the appointment (Doesn't realise no matter when you get there, there'll be a wait) and was very surprised when the doctor told him he'd need to be referred to someone else in the clinic whom specialises in corneal grafting (Doesn't realise you NEVER get in to see the person you want straight off). He has a lot to learn, and I hope he never has to learn it.
The said appointment was very good however, as we learnt Craig is likely a candidate for a corneal graft. He has no vision in his right eye due to a scarred cornea, and this would hopefully give him back most of his sight, albiet may be a little blurred. There is very little risk of rejection, and he'd be in and out of hospital within 24 hours. He'd then get 2-4 weeks off work so we need to start saving up his leave now (If only I could stop getting sick!!)
Unfortunately for me, yesterday was return of the pain day. I have completely weaned off the first med, and I'm still aching all over. Meaning either the DILE diagnosis is wrong, or it's not that drug. Next, I've got severe ovary pain again. I'm about ready to get a knife and hack the thing out myself.
Anyway, that brings us to today. Today was a pain day, I spent most of it in bed and taking lots of my meds. One of the meds caused some palpitations and a run of SVT. Or maybe that's the pain, I can't be sure.
Nonetheless, I have my appointment next Thursday where I should find out gynaecological treatments for the awful ovary. Please let them be viable options for me, the girl whom can't go on birth control and most likely wouldn't be cleared for surgery right now.
Tuesday, April 14, 2009
DILE
I've decided to do a little profile of each of the rare and little-known conditions I have managed to accumulate on my diagnoses list. The first of these I'm going to explain/look at is Dile, or Drug Induced Lupus.
This is my newest and least understood diagnosis. I have had many of the symptoms of lupus, but my bloods specific for this condition have been negative. It took a visit to my new General specialist, and a thorough look at the medications I'm on and this has been the tentative diagnosis. To be confirmed when I have weaned off the meds that may be causing it (I'm on three that could be the culpurate, so we're eliminating one at a time).
So What is DILE? Basically it's a side effect. It occurs in .03% of patients on certain medications. It occurs after longterm use of said medications. the symptoms are:
Muscle and joint pain and swelling
Flu-like symptoms of fatigue and fever
Serositis (inflammation around the lungs or heart that causes pain or discomfort)
Certain laboratory test abnormalities.
So far I have started coming off the least likely to effect my heart function medication, so fingers crossed we're on the right path AND it's this drug and not one of the others my body actually really relies on.
Like many of the other conditions I have, this is something I had NEVER heard of. It's still an uncertain diagnosis at this time, but there certainly looks to be something autoimmune going on with me too. Hence the employment of six specialists trying to figure me out ;)
Regardless of whether this becomes an official diagnosis, learning about DILE and Lupus in general has made me become so much more aware of the 'invisible' conditions people live with every day. I know of people with official Lupus diagnoses, and the courage they possess is huge. So today I am thinking of all of you whom suffer from Lupus. I wish I could take your pain away.
This is my newest and least understood diagnosis. I have had many of the symptoms of lupus, but my bloods specific for this condition have been negative. It took a visit to my new General specialist, and a thorough look at the medications I'm on and this has been the tentative diagnosis. To be confirmed when I have weaned off the meds that may be causing it (I'm on three that could be the culpurate, so we're eliminating one at a time).
So What is DILE? Basically it's a side effect. It occurs in .03% of patients on certain medications. It occurs after longterm use of said medications. the symptoms are:
Muscle and joint pain and swelling
Flu-like symptoms of fatigue and fever
Serositis (inflammation around the lungs or heart that causes pain or discomfort)
Certain laboratory test abnormalities.
So far I have started coming off the least likely to effect my heart function medication, so fingers crossed we're on the right path AND it's this drug and not one of the others my body actually really relies on.
Like many of the other conditions I have, this is something I had NEVER heard of. It's still an uncertain diagnosis at this time, but there certainly looks to be something autoimmune going on with me too. Hence the employment of six specialists trying to figure me out ;)
Regardless of whether this becomes an official diagnosis, learning about DILE and Lupus in general has made me become so much more aware of the 'invisible' conditions people live with every day. I know of people with official Lupus diagnoses, and the courage they possess is huge. So today I am thinking of all of you whom suffer from Lupus. I wish I could take your pain away.
Dreams are free
Having lived for a little while now with a chronic illness, I was surprised today by the question, "What is your dream?"
For a long time I had been focused on whether it was a 'good' day or a 'bad' day, not seeing very far into the future apart from to schedule medical appointments. And while I got used to this new way of life, I began to realise this focus on my health was ultimately unhealthy. I wasn't going out anywhere, I wasn't seeing my friends, I wasn't reading or doing any of the fun stuff I used to. I wasn't me anymore. I became my illness. Not good.
So over the last two years this has become my new focus. Rekindling friendships I missed dearly, rediscovering my passions and what made me happy. Venturing out on those days I feel good. Driving again, and most recently finally gaining my full licence!! However I had given no thought yet to what my dreams may be now.
So I was asked this question today while watching a movie with my Mum and baby sister. I felt the woman in said movie had such an attainable dream, something she'd actually end up doing which seemed foreign to me (She wanted to open a pie shop if you're wondering). This prompted my Mum to ask me what my dream was.
"To go into outerspace." I said quite seriously.
"Really?" My Mum looked surprised.
"No."
But after this teasing of my Mum, I really thought about it. I actually admitted to her later on that I'd like to write. Maybe publish a book one day, but it was just a dream and I don't see it as something attainable.
And then I received a really special email from my sweet friend Michelle that made me realise perhaps it's not such a silly thing to hope for. And the more I think about it, the more I feel that even if no one ever read what I wrote, I'd still LOVE writing. So I'm going to do it. I am going to complete a piece of writing, a complete novel.
And while I'm talking about totally sweet friends, a huge thank you for Claire as well for the amazing thing you did today!
So to finish off, I encourage you to remember your dreams. What did you want to be when you were a kid? What brings you joy and happiness?
For a long time I had been focused on whether it was a 'good' day or a 'bad' day, not seeing very far into the future apart from to schedule medical appointments. And while I got used to this new way of life, I began to realise this focus on my health was ultimately unhealthy. I wasn't going out anywhere, I wasn't seeing my friends, I wasn't reading or doing any of the fun stuff I used to. I wasn't me anymore. I became my illness. Not good.
So over the last two years this has become my new focus. Rekindling friendships I missed dearly, rediscovering my passions and what made me happy. Venturing out on those days I feel good. Driving again, and most recently finally gaining my full licence!! However I had given no thought yet to what my dreams may be now.
So I was asked this question today while watching a movie with my Mum and baby sister. I felt the woman in said movie had such an attainable dream, something she'd actually end up doing which seemed foreign to me (She wanted to open a pie shop if you're wondering). This prompted my Mum to ask me what my dream was.
"To go into outerspace." I said quite seriously.
"Really?" My Mum looked surprised.
"No."
But after this teasing of my Mum, I really thought about it. I actually admitted to her later on that I'd like to write. Maybe publish a book one day, but it was just a dream and I don't see it as something attainable.
And then I received a really special email from my sweet friend Michelle that made me realise perhaps it's not such a silly thing to hope for. And the more I think about it, the more I feel that even if no one ever read what I wrote, I'd still LOVE writing. So I'm going to do it. I am going to complete a piece of writing, a complete novel.
And while I'm talking about totally sweet friends, a huge thank you for Claire as well for the amazing thing you did today!
So to finish off, I encourage you to remember your dreams. What did you want to be when you were a kid? What brings you joy and happiness?
Monday, April 13, 2009
Counting my blessings
Yesterday was such a warm, sunshiney day. Very atypical for mid Autumn, but very much appreciated! We all managed to get out and about and meet up with my parents, one of my sisters and my brother-in-law and their two gorgeous kiddies at the park. The kids had a ball running around and playing with my brother-in-law. I got lots of cutie pics and we all had a great time.
We also had a visit from the easter bunny (My lovely older sister) and the boys ate far too much chocolate. My mother-in-law also bought us over some yummy soup as she'd heard we were all unwell in this house (Colds galore!)Then today I had some quiet time to myself when I wasn't feeling terrible and the boys were busy playing and I thought about how lucky my little family is. We have family whom love us and are amazingly supportive. I have great friends whom never fail to lift me up when I feel sick, or sad, or sad about being sick. Lucky. Blessed.
And I do think Easter is a great time to count some blessings. For I have so very much to be thankful for, and while I do tend to remember this on a daily basis it's nice to have a little time to really think about it.
So thank you, my friends, my family. For all the times you have helped us out, made me smile, played with our children (especially the running around kind of games I struggle with!), made us meals, tidied our house, dropped in just to say hi, remembered to ask Craig how he is, understood when I've had to cancel coming to something, for emailing me even when I haven't managed to reply to your last email yet.
And thank you for not giving up on me. It's not easy maintaining a friendship with a person whom has a chronic illness. It must at times feel very onesided. It means a lot to me that you are still with me.
And for the record, I'm not the only one in this family whom at times is completely overcome with fatigue. I've got proof!!
Saturday, April 11, 2009
Being Responsible
UPDATED: I did forget two important parts of this story.
1. The part where I tried to smile nicely at Smug receptionist in the hopes she would take pity on me and let me pay off a smaller amount of my account, and instead she gave me a somewhat horrified/distracted look. Upon getting back to my car I realised smiling had made my extremely dry lips crack and I had blood all over my teeth. That'll teach me for smiling.
2. The fact I have EXTREMELY cool parents, and I have no idea what I'd do without them. Such supportive, kind and wise people, they are one of the biggest reasons I see my life as truely blessed, despite it containing chronic illness.
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ORIGINAL POST
I quite dislike having to visit with any of my doctors anymore than possible. A situation which has lead to at least two late night visits to the Accident and medical centre (and another small account which adds to our list of medical accounts we owe). So with it being the easter weekend I was a grown-up about things and took myself down to see my doctor about the nasty head cold on Thursday. Might as well keep our debt in one place as much as possible.
Now I must just explain that each time I go into the doctors office I deal mainly with lovely sweet receptionist whom allows me to make small payments on my account, and assures me not to worry about it. I have managed to keep said account under $100. The only reason it had begun to creep up was I have been needing to see them so often lately, and for some reason the Account manager saw fit to TAKE ME OFF the high user programme, meaning I suddenly went from paying $10 per visit to now needing to pay $40 per visit. A sum which adds up when you go anything up to three times a week.
So that's the background. Anyway I wander into the office on Thursday and faced my first sign that things weren't going to be fun this visit. Smug receptionist was on. The one who knows who I am (I'm in there all the time) but pretends she can't remember me. She told me I would need to pay off said account that day or I wouldn't be given anymore appointments. Great, especially considering we are especially broke at the moment and I had only just enough money to cover a prescription surcharge.
After a wait, I got in to see my doctor. We went over things and agreed I had a head cold. After a check-up it was also determined I had a sinus and chest infection. I was then asked when I was seeing my specialists. I listed off the six dates for the various specialists I'm seeing.
"That's a lot, lucky we're keeping you busy." my doctor laughed. Yes, lucky... I'd be getting in so much trouble otherwise, what with my penchant for all things crazy and my abundance of energy (Note sarcasm). It was also in this moment I realised SIX specialists, they'll need to be paid when I see them. Crap.
I do have insurance, but in this case we need to cover the expenses first, and then we get refunded at some point in time after making the claim.
I also then remembered how when Craig and I got married we imagined we'd be so set up by the time he turned thirty. Well, at least we'd be out of debt and buying a home.
Then I got sick.
Anyway, to make this long story short I felt too sick and too embaressed to ask if I could contiue to pay the account off over the next couple of weeks to either my doctor or the smug receptionist. I had to go and borrow money off my parents to pay for my account. What had started off making me feel like a grown up ended up making me feel like a child, and one whom bleeds her parents dry at that.
I hate being in this position. I totally get that said receptionist is just doing her job. I don't want to be the person whom can't pay for stuff, I hate owing money. Right now we are in a bit of strife.
This too shall pass.
1. The part where I tried to smile nicely at Smug receptionist in the hopes she would take pity on me and let me pay off a smaller amount of my account, and instead she gave me a somewhat horrified/distracted look. Upon getting back to my car I realised smiling had made my extremely dry lips crack and I had blood all over my teeth. That'll teach me for smiling.
2. The fact I have EXTREMELY cool parents, and I have no idea what I'd do without them. Such supportive, kind and wise people, they are one of the biggest reasons I see my life as truely blessed, despite it containing chronic illness.
*********************************************************************************
ORIGINAL POST
I quite dislike having to visit with any of my doctors anymore than possible. A situation which has lead to at least two late night visits to the Accident and medical centre (and another small account which adds to our list of medical accounts we owe). So with it being the easter weekend I was a grown-up about things and took myself down to see my doctor about the nasty head cold on Thursday. Might as well keep our debt in one place as much as possible.
Now I must just explain that each time I go into the doctors office I deal mainly with lovely sweet receptionist whom allows me to make small payments on my account, and assures me not to worry about it. I have managed to keep said account under $100. The only reason it had begun to creep up was I have been needing to see them so often lately, and for some reason the Account manager saw fit to TAKE ME OFF the high user programme, meaning I suddenly went from paying $10 per visit to now needing to pay $40 per visit. A sum which adds up when you go anything up to three times a week.
So that's the background. Anyway I wander into the office on Thursday and faced my first sign that things weren't going to be fun this visit. Smug receptionist was on. The one who knows who I am (I'm in there all the time) but pretends she can't remember me. She told me I would need to pay off said account that day or I wouldn't be given anymore appointments. Great, especially considering we are especially broke at the moment and I had only just enough money to cover a prescription surcharge.
After a wait, I got in to see my doctor. We went over things and agreed I had a head cold. After a check-up it was also determined I had a sinus and chest infection. I was then asked when I was seeing my specialists. I listed off the six dates for the various specialists I'm seeing.
"That's a lot, lucky we're keeping you busy." my doctor laughed. Yes, lucky... I'd be getting in so much trouble otherwise, what with my penchant for all things crazy and my abundance of energy (Note sarcasm). It was also in this moment I realised SIX specialists, they'll need to be paid when I see them. Crap.
I do have insurance, but in this case we need to cover the expenses first, and then we get refunded at some point in time after making the claim.
I also then remembered how when Craig and I got married we imagined we'd be so set up by the time he turned thirty. Well, at least we'd be out of debt and buying a home.
Then I got sick.
Anyway, to make this long story short I felt too sick and too embaressed to ask if I could contiue to pay the account off over the next couple of weeks to either my doctor or the smug receptionist. I had to go and borrow money off my parents to pay for my account. What had started off making me feel like a grown up ended up making me feel like a child, and one whom bleeds her parents dry at that.
I hate being in this position. I totally get that said receptionist is just doing her job. I don't want to be the person whom can't pay for stuff, I hate owing money. Right now we are in a bit of strife.
This too shall pass.
Thursday, April 9, 2009
Letter to my chronic illness
Using this article I have written my own letters from and to my chronic illness. I suppose it's healing. At the least, it helps to reflect.
Dear Carla,
Congratulations! We are pleased to advise you that you have been chosen to be the host for Dilated Cardiomyopathy, Chronic fatigue, polycystic ovarian disease, drug induced Lupus and a few other as yet un-named chronic illnesses! You will begin to experience the following symptoms, sometimes all at once;
Extreme tiredness. This isn’t your run-of –the-mill get a good night’s sleep and you’ll be fine tiredness. This will be muscle aching, barely able to get up in the morning Extreme fatigue. You’ll be lucky to get through the day without needing a nap!
Arrhythmias and general heart abnormalities. We’ll hit out of nowhere with little to no warning, and continually change triggers so you’ll never completely figure out what causes us! In addition to this, once your heart returns to normal rhythm you’ll feel as though you’ve run a marathon and need to rest for the remainder of the day!
Severe Pain. It’s neat to grow cysts on your ovaries, and you’ll get great stabby pain when they burst. Good times.
Forgetfulness, you’ll never remember what you’re doing or why you went upstairs… until you get back downstairs that is!
As well as all this, we’ve decided your life is much too crowded. In order to fit in this chronic illness, the following is what we’ll take away from you;
The ability to get upstairs without feeling dizzy, nauseas and short of breath
The ability to play and run around with your children like you imagined you would be able to
The ability to be reliable
The ability to maintain a “normal” social life
The ability to function without excessive amounts of prescription medications
The ability to go for walks without your heart racing out of control until you feel as though you may pass out
As indicated previously, this condition is in constant flux and more symptoms will be added as we deem necessary. There is no warranty guarantee, technical support, or customer service available.
Sincerely,Dilated Cardiomyopathy, Chronic fatigue, polycystic ovarian disease, drug induced lupus and a few other as yet un-named chronic illnesses
Dear Dilated Cardiomyopathy, Chronic fatigue, polycystic ovarian disease, drug induced lupus and a few other as yet un-named chronic illnesses
Thanks for your letter informing me of your take over of my body. While I have no say over this matter, I do need to inform you that I have no intention of letting you win. In addition to this, you have actually gifted me many things I would never have learnt without your presence. These include;
Amazing friendships with close, good, true friends
The ability to see the good in myself for who I am, and not what I can/cannot do
Empathy and a desire to help others
A great knowledge of myself, my health and my body
Compassion for all those that are going through rough times
Ability to know that even if it can’t be seen, people may be struggling and deserve our support
Reason to look after myself
Reevaluate my life to see what is really important, and not wasting my energy on those things that do not matter.
You see, you will not find me an agreeable host. I will fight you, I will not give up. On bad days, I will take care of myself. On the good days, I will take advantage of every precious moment. You have thrown some obstacles in my life's journey, but I will go over them or around them, no matter what it takes. In fact, while I am overcoming them, I will stop for a moment to reflect upon the mountain I am climbing, plant a few seeds and then continue on. I will learn and grow from this experience and help others.
Sincerely,Carla
PS, Screw you. LOL, now THAT was healing!
Dear Carla,
Congratulations! We are pleased to advise you that you have been chosen to be the host for Dilated Cardiomyopathy, Chronic fatigue, polycystic ovarian disease, drug induced Lupus and a few other as yet un-named chronic illnesses! You will begin to experience the following symptoms, sometimes all at once;
Extreme tiredness. This isn’t your run-of –the-mill get a good night’s sleep and you’ll be fine tiredness. This will be muscle aching, barely able to get up in the morning Extreme fatigue. You’ll be lucky to get through the day without needing a nap!
Arrhythmias and general heart abnormalities. We’ll hit out of nowhere with little to no warning, and continually change triggers so you’ll never completely figure out what causes us! In addition to this, once your heart returns to normal rhythm you’ll feel as though you’ve run a marathon and need to rest for the remainder of the day!
Severe Pain. It’s neat to grow cysts on your ovaries, and you’ll get great stabby pain when they burst. Good times.
Forgetfulness, you’ll never remember what you’re doing or why you went upstairs… until you get back downstairs that is!
As well as all this, we’ve decided your life is much too crowded. In order to fit in this chronic illness, the following is what we’ll take away from you;
The ability to get upstairs without feeling dizzy, nauseas and short of breath
The ability to play and run around with your children like you imagined you would be able to
The ability to be reliable
The ability to maintain a “normal” social life
The ability to function without excessive amounts of prescription medications
The ability to go for walks without your heart racing out of control until you feel as though you may pass out
As indicated previously, this condition is in constant flux and more symptoms will be added as we deem necessary. There is no warranty guarantee, technical support, or customer service available.
Sincerely,Dilated Cardiomyopathy, Chronic fatigue, polycystic ovarian disease, drug induced lupus and a few other as yet un-named chronic illnesses
Dear Dilated Cardiomyopathy, Chronic fatigue, polycystic ovarian disease, drug induced lupus and a few other as yet un-named chronic illnesses
Thanks for your letter informing me of your take over of my body. While I have no say over this matter, I do need to inform you that I have no intention of letting you win. In addition to this, you have actually gifted me many things I would never have learnt without your presence. These include;
Amazing friendships with close, good, true friends
The ability to see the good in myself for who I am, and not what I can/cannot do
Empathy and a desire to help others
A great knowledge of myself, my health and my body
Compassion for all those that are going through rough times
Ability to know that even if it can’t be seen, people may be struggling and deserve our support
Reason to look after myself
Reevaluate my life to see what is really important, and not wasting my energy on those things that do not matter.
You see, you will not find me an agreeable host. I will fight you, I will not give up. On bad days, I will take care of myself. On the good days, I will take advantage of every precious moment. You have thrown some obstacles in my life's journey, but I will go over them or around them, no matter what it takes. In fact, while I am overcoming them, I will stop for a moment to reflect upon the mountain I am climbing, plant a few seeds and then continue on. I will learn and grow from this experience and help others.
Sincerely,Carla
PS, Screw you. LOL, now THAT was healing!
Mr. Hanky
OK, for those of you whom watched South Park, you know who Mr. Hanky is. For those whom didn't, you may not understand and may stop reading if you wish as this will make very little sense to you.
So Baby B has been doing very well with his toilet trainedness. Except for pooping. He likes to just go wherever he is, or if I'm really lucky go in his pants, and then hide it somewhere for me to find. Well, today he finally went on the potty. Yay!! The days of finding poop in unexpected places may be coming to the end.
So while this may be true, I must mention this morning I needed to clean up a little pile of poop in baby B's room. Well, it seems I missed some. Tonight when putting the twins to bed, we walked into baby B's room and who was staring at us from over by the train set but Mr. Hanky himself.
"Where did that poop come from?" lovely husband asked, clearly disgusted and horrified.
"That'd be Mr. Hanky. I figure he's dropping off the boys easter eggs early."
Wednesday, April 8, 2009
The Spoon Theory
I think I may have mentioned at some point how much I love google? Well, today it bought me to an amazing article written by Christine Miserandino which articulately explains what it is like to live with a chronic illness. It is entitled the spoon theory .
Now this so perfectly explains what each day is like for me, so much so I felt close to tears as I read the end. The website as a whole in fact looks very interesting, so i will indulge myself a little later to read up on advice from other spoonies.
OK, so more on this article tomorrow as at this point I have used up far too many spoons on my blog today :)
See, now you have to read it to see what I'm on about! Mwahahaha
Now this so perfectly explains what each day is like for me, so much so I felt close to tears as I read the end. The website as a whole in fact looks very interesting, so i will indulge myself a little later to read up on advice from other spoonies.
OK, so more on this article tomorrow as at this point I have used up far too many spoons on my blog today :)
See, now you have to read it to see what I'm on about! Mwahahaha
Autumn is here
And it's cold. But we still have sunshine! So as my lovely twins kept seeing all the amazing photos in Stellan's name gallery and we haven't taken photos in a while, we braved the cold and managed to get this shot;
If you don't know Stellan's story it is amazing and I highly recommend you click on the praying for Stellan button to learn more about this amazingly brave young baby.
Oh my how I was cranky this afternoon. I am tired, and feeling terrible and just have no patience. Hence we didn't get many pictures. But, making me feel a little better, the boys ARE smiling in the ones we did get.
OK, so maybe just Baby B is smiling in the pics I got. Baby A more looks nervous, like when will Mummy stop being like cranky the crane? (Those actually are his words). Ah well, tomorrow is a brand new day.
If you don't know Stellan's story it is amazing and I highly recommend you click on the praying for Stellan button to learn more about this amazingly brave young baby.
Oh my how I was cranky this afternoon. I am tired, and feeling terrible and just have no patience. Hence we didn't get many pictures. But, making me feel a little better, the boys ARE smiling in the ones we did get.
OK, so maybe just Baby B is smiling in the pics I got. Baby A more looks nervous, like when will Mummy stop being like cranky the crane? (Those actually are his words). Ah well, tomorrow is a brand new day.
Tuesday, April 7, 2009
Do I have a cold or the flu?
Oh google, how I love thee. Especially when I have such important questions such as was the movie strangers really based on a true story? Is my cat pregnant? And most impotantly, do i have a cold or the flu?
Well, after extensive research (I read the first three websites to come up out of 500,000+), the result seems to be I have a cold. Or the flu.
Hmmm. Informative.
Reasons for the flu:
I have a temperture, I am aching all over, I have a sore throat, I am really congested and if it weren't for the four hourly panadol and Volataren with a pinch of codeine I'm pretty sure this would be one nasty as headache.
But I've had the flu jab. But this could be a strain of the flu I wasn't vaccinated against.
Reasons for a cold:
I have a sore throat. I'm really congested. I have a fever.
So really I have no idea. Basically treament is about the same, risk of complications due to my heart condition about the same. Length of recovery about the same. So today I have a nasty cold. Tomorrow I might have the flu. I'll see what mood I'm in.
And I might just google it.
Well, after extensive research (I read the first three websites to come up out of 500,000+), the result seems to be I have a cold. Or the flu.
Hmmm. Informative.
Reasons for the flu:
I have a temperture, I am aching all over, I have a sore throat, I am really congested and if it weren't for the four hourly panadol and Volataren with a pinch of codeine I'm pretty sure this would be one nasty as headache.
But I've had the flu jab. But this could be a strain of the flu I wasn't vaccinated against.
Reasons for a cold:
I have a sore throat. I'm really congested. I have a fever.
So really I have no idea. Basically treament is about the same, risk of complications due to my heart condition about the same. Length of recovery about the same. So today I have a nasty cold. Tomorrow I might have the flu. I'll see what mood I'm in.
And I might just google it.
Monday, April 6, 2009
I HATE head colds
With a passion. I have lived through severe ovarian pain due to cysts, Chronic fatigue, Legionnaires diease, Heart failure, dilated cardiomyopathy, multiple arrythmias... but the one thing that gets me everytime is the common cold. I HATE them with a vengence. To the point that if one of my sweet adorable but completely boggied up baby boys try to kiss me I try and distract them. I hate colds. I hate boogers.
None of this is helped by the fact that my post-heart condition colds are longer lasting and much more likely to result in chest infections. Tonight I am so achy, blocked up and have a sore throat, I want cuddles and a sleeping tablet that'll work until this cold is gone. I want my Mum to move in and make me endless apple crumble until my throat stops hurting. I'm being a total baby and I don't care.
For some reason I never feel this way about my chronic illnesses. I never feel the need to complain or be looked after in the way I desire when I have a cold. In my imagination heart failure totally trumps head cold, but in reality I can much better deal with the former that the latter. I've had friends or acquitances tell me how horrible they feel due to a cold or flu then quickly add that I must have it so much worse and what they have is nothing in comparison. People, if I have a funny look on my face it's because I don't want to catch whatever it is you have! Colds are my enemy.
In other news, I am now a fully licenced driver! The dreaded full licence test is over. Thank goodness.
Edited to add: Just wanted to clarify that I don't mind seeing people when they are ill (have been worrying about that one all night!). More exactly when someone believes I would see a cold or flu as 'nothing much' it couldn't be further than the truth! They are my kryptonite, and if you currently have a cold or flu I feel your pain... Plus I'm on a lot of heavy duty pain meds so if I still don't make sense I blame the drugs.
None of this is helped by the fact that my post-heart condition colds are longer lasting and much more likely to result in chest infections. Tonight I am so achy, blocked up and have a sore throat, I want cuddles and a sleeping tablet that'll work until this cold is gone. I want my Mum to move in and make me endless apple crumble until my throat stops hurting. I'm being a total baby and I don't care.
For some reason I never feel this way about my chronic illnesses. I never feel the need to complain or be looked after in the way I desire when I have a cold. In my imagination heart failure totally trumps head cold, but in reality I can much better deal with the former that the latter. I've had friends or acquitances tell me how horrible they feel due to a cold or flu then quickly add that I must have it so much worse and what they have is nothing in comparison. People, if I have a funny look on my face it's because I don't want to catch whatever it is you have! Colds are my enemy.
In other news, I am now a fully licenced driver! The dreaded full licence test is over. Thank goodness.
Edited to add: Just wanted to clarify that I don't mind seeing people when they are ill (have been worrying about that one all night!). More exactly when someone believes I would see a cold or flu as 'nothing much' it couldn't be further than the truth! They are my kryptonite, and if you currently have a cold or flu I feel your pain... Plus I'm on a lot of heavy duty pain meds so if I still don't make sense I blame the drugs.
Friday, April 3, 2009
SVT
So my next update was going to be non-medical related. But I left it too long obviously, because now I have an all new diagnosis for another condition! Although this has been ongoing, I'd had no symptoms for some time and so it hadn't been followed up any further. Then out of the blue, it hits. SVT
Supraventricular tachycardia. Out of no where my heart flips into this rhythm. Tuesday I was sitting on the couch. My heart rate went from 86bpm to 170 in a split second. It was quite scary. I tried to wait it out, but unlike the other times it wouldn't go away. It went for a total of one hour this time. During this time I headed down to the Doctors, where it was officially diagnosed. In the past my episodes of SVT were short and not caught by an ECG or doctor, but it's come back with a vengence.So over the last few days my heart has been flipping in and out of this rhythm. Luckily it resolves itself. The worrying thing is it's lasting longer than it used to before flipping itself back into sinus rhythm.
I'm already on all the meds recommended for this arrythmia so there's not a lot else to do to prevent them. Now I just have to wait and hope they don't get bad enough to end me up in the hospital. Or down the path of needing an ICD.Time will tell. Like all things with me, time will be either a healer or a giant flashing arrow that more needs to be done. You'll know when I know
Supraventricular tachycardia. Out of no where my heart flips into this rhythm. Tuesday I was sitting on the couch. My heart rate went from 86bpm to 170 in a split second. It was quite scary. I tried to wait it out, but unlike the other times it wouldn't go away. It went for a total of one hour this time. During this time I headed down to the Doctors, where it was officially diagnosed. In the past my episodes of SVT were short and not caught by an ECG or doctor, but it's come back with a vengence.So over the last few days my heart has been flipping in and out of this rhythm. Luckily it resolves itself. The worrying thing is it's lasting longer than it used to before flipping itself back into sinus rhythm.
I'm already on all the meds recommended for this arrythmia so there's not a lot else to do to prevent them. Now I just have to wait and hope they don't get bad enough to end me up in the hospital. Or down the path of needing an ICD.Time will tell. Like all things with me, time will be either a healer or a giant flashing arrow that more needs to be done. You'll know when I know
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