Friday, August 28, 2009
They are constantly teaching me new things, making me laugh and remind me how amazing the world actually is. Last week was the first one in a while where I had the boys every day. What I mean is, their Nanny was unwell and they weren't up to kindy a few days so instead of my usual three half days and two whole days with them we got to spend the whole week together. I really enjoyed it, after my initial nervousness about whether my health was up to such a full-on week.
It was also a wonderful learning opportunity. On the two full days I have with the boys each week I try to cram fun outings, learning lessons, shopping and playing into the day. In a way it helped ease the guilt of having them in care. So knowing we had a full week ahead of us, i made big plans. The first two days we were out all the time. We didn't get home until Craig did and I was feeling exhausted. The second night as the boys were heading to bed they asked what we were doing the next day. I hadn't decided at that point so told them they could choose. Guess what they said?
"Can we stay home with you and rest and have cuddles?"
This is when I realised they didn't care what we did, or if we went out somewhere exciting and got bought new things. They, like me, just enjoyed being home together. I still plan that we will have a few special occasions a month, but so far we are really enjoying our quiet time at home.
Something else I have noticed both my boys do is say "We" when they mean "I". The last time i tried to correct them, the conversation went like this:
James "Can we have a drink please?"
Me; "Sure, what would you both like?"
James; "No, not Ben."
Me; "So you would like a drink please."
James "Yes, We said we have a drink please?"
Me; "Honey, it's I. If just you want something, you can say I."
Ben, from other room; "Yeah James, just you. So say we have a drink, not me."
Sigh. I'm sure it'll catch on eventually.
I've been lucky enough to be dropping my sweet niece and lovely nephew to school a few time recently. I love going into the school and seeing their classrooms, meeting my nieces teacher. it's a great school with a great atmosphere. This morning the boys and I took my niece to her classroom where she proudly showed off her twins. She proudly announced they were "Identical twins!"
"Honey, they are non-identical twins. They look very different." I explained. My niece looked at me like I was losing my mind, then said - "But they have the same hats on, so they are identical."
Wednesday, August 26, 2009
Yesterday at Cardiac Rehab I had confirmed all the things I had hear about beta blockers. This is one of the heart meds I'm on, actually the one I have had to increase to almost maximum dosage to actually get my heart rate under control. It works to slow down your heart rate and thus give it time to rest. However as my cardiac nurse put it yesterday "It also slows everything else down".
This means my memory pretty much sucks most of the time. I feel a bit brain fogged, don't have the same mental clarity I once did and basically feel frustrated by both of the above quite frequently.
So really this blog becomes even more important. To remind of the things my boys have gotten up to. So I'm promising myself to write more often.
But right now I'm off to watch My Super Sweet sixteen UK and shake my head at these kids and their parents.
Monday, August 17, 2009
I find this question a little hard. Basically I have to answer "What things have you always wanted to do in life?". I'm finding it hard because the things I have really wanted I have done. I hadn't really thought of any new long-term things so I guess I need to now!
1.I would love to travel to Egypt, Parts of Europe, and all around the United States.
2.I would love to experience owning a dog. A really small one. Or maybe even just babysitting one.
3. What do you call a marathon you walk in, not a running one? I want to complete a walking marathon.
4. I want to walk some of the beautiful trails in the South Island. I want to do one with my Dad.
5. I would like to complete a novel, whether anyone reads it or not.
I'll stick with five. It's been fun to ponder this :)
Thursday, August 13, 2009
Today is Nuka's birthday. We have been best friends since our third form in college, so fourteen and a half years now. Every milestone in our lives since the day we meet we have shared. We have an amazing ability to talk for hours, to tell each other (almost!) anything. She is one of the twins honourary Aunties (Along with Claire and Michelle) meaning to me that she is such a wonderful, good, fantastic friend she is really part of our family. Really, she's another sister to me.
So for her birthday I thought I'd share some quotes that I feel fit our friendship. Next year I promise to write something myself, but I'm a little short on inspiration tonight due to some pain.
To Nuka, Happy Birthday :)
The best kind of friend is the one you could sit on a porch with, never saying a word, and walk away feeling like that was the best conversation you've had. ~Author Unknown
A true friend is one who thinks you are a good egg even if you are half-cracked. ~Author Unknown
Friends are kisses blown to us by angels. ~Author Unknown
What is a friend? A single soul dwelling in two bodies. ~Aristotle
Are we not like two volumes of one book? ~Marceline Desbordes-Valmore
When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares. ~Henri Nouwen
Oh, the comfort, the inexpressible comfort of feeling safe with a person, having neither to weigh thoughts nor measure words, but pouring them all out, just as they are, chaff and grain together, certain that a faithful hand will take and sift them, keep what is worth keeping, and with a breath of kindness blow the rest away. ~Dinah Craik
It's the friends who follow you up steep hillsides, stay with you even when you tell them wolves are coming, and forgive you for telling them your house is haunted right before falling asleep that count. ~ Carla Watkin
Monday, August 10, 2009
So I have rethought the matter. I have lovely photos of my two little guys to share. I'm planning to go out and grab some batteries for my camera to get even more tomorrow (Well, in between their morning with their caregiver, Kindy and my Cardiac rehab! Oh and picking Craig up from the main city...). Then on Wednesday I am going to do a very special post all about my boys, what they're up to now they are almost four. Complete with pictures. And not once will illness be mentioned.
But this post, I thought I would share something we did with the boys this weekend. I had a really good day Saturday, managing to get up and play with the twins, go out with them to the park. It was a beautiful fun day. Then on Sunday i felt terrible. I spent most of the day in bed. It was while I was there, listening to my family playing outside in the garden I realised that all the boys knew was that Mummy was sick. Not why, or the reasons why one day I can play and the next we only have little quiet moments together. So I grabbed some paper and crayons and began to draw.
Now I'm not much of a drawer, but I managed to come up with pictures of hearts, two healthy and strong and one with a floppy left side. I drew doctors, a hospital, a picture of us all huggled up together and one of me with a bit of a sad face. I gathered the boys up next to me and told them a story.
I told them about how the heart works, pumping blood around our bodies so we can play. I told them that Mummy's heart was a bit floppy so didn't do such a good job of pumping the blood. That meant (Pointing at the doctor picture) that I visited doctors who gave me medicine to help me feel better. I showed them the medicines and shared with them what each one does. We talked about hospital and how it isn't a scary place but a place filled with Nurses and Doctors working together to make you better. We talked about how mummy gets tired, sometimes slowly and sometimes really suddenly. I let them know that it made me feel sad to have to rest on those days, but it meant I got better quicker so could be playing again soon.
I told them all about the tests I have (important since Ben saw me have one of my ECG's), and how most of them don't hurt. But sometimes the blood tests do a little, but having them cuddle me after made it feel much better. I let them ask questions, talk about how they feel when I'm sick or grumpy because I'm so tired. We let them know they could talk to us any time, or call their Grandparents or Aunties if they wanted someone else to talk to.
Right at the end, when I asked them if there was anything else they wanted to talk about, Benji looked up at me and said "Mummy, do you get scared when you're sick?" I looked at him and contemplated my answer for a few seconds before settling on the truth.
"Sometimes Benny. But I know I have lots of good doctors, friends and family. Most importantly I have you and James and Daddy so that always makes me feel better."
He looked at me, a grin on his face "Really!?" He said in surprise, "Because sometimes I feel a little bit scared as well."
And while I gave them cuddles and we settled in to watch a movie I realised my hesitation about sharing so much with them was wrong. They are getting older now, even if I look at them and still see babies. And now Ben knows he can tell us if he feels scared, and that sometimes even grown-ups feel that way too.
I think it was all about making it age-appropriate and letting them know they both do so much to help me and are wonderful little boys. Hopefully I'm on the right track.
On to the reason I received a call from the doctor's office. Luckily it was from one of the nurses I know quite well. She explained to me that the Immunologist is very interested in my case now and would like certain tests run, the results of which will indicate if I need to go in and meet with him or be passed to someone else. These tests include the cardiac MRI, a range of blood tests and a tuberculosis screening test called a mantoux. I find the fact there are so many people reviewing my medical records at this point in time quite reassuring, hopefully with these Seven! specialists we will finally get everything sorted.
Sunday, August 9, 2009
And now I have a taste for summer.
Saturday, August 8, 2009
Perhaps I really am so abnormal there's been no one else like me.
To be more specific (I get distracted easily don't I?) I went in for a follow up with my cardiologist on Thursday evening. With the severe flu I had and chest infection two weeks ago, I've struggled with quite bad fatigue again plus episodes of tachycardia requiring medical attention. My GP's office were being less than helpful so I rang my cardiologist and self-referred. So after being told by the nurses at my GP's office not to bother the cardiologist (Not to bother him? So letting him know about deterioration in my condition is seen as bothering a doctor? What exactly is their job then?) it turns out he was quite concerned by the issues I have been having lately (Fainting, feeling unwell, tiredness, swelling).
I was sent down for an ECG which came back abnormal. My ECG's in the past have only ever shown sinus tachycardia (Annoying but not dangerous) or PVC's (Again annoying but not dangerous). This time it showed something called LVH or Left Ventricular Hypertrophy. It basically means the voltage from my heart indicates to the ECG probes that my Left ventricle has thickened. This is a marker for Dilated Cardiomyopathy.
Concerning to me is the fact this abnormality is only just showing up. Does it mean my condition is getting worse? Does it mean the possible inflammation in my heart is effecting how well my heart is pumping blood around my body? Is there a lot of damage or scar tissue from the Dilated Cardiomyopathy? At this point no body knows for sure. My cardiologist is calling a colleague to hurry along a cardiac MRI which will give us the answers to all these questions and more.
So yes, to be honest I am worried. This is scary, the uncertainty and the long wait. All I can do is what I'm already doing - Cardiac rehab, adequate rest and a healthy balanced diet.
And hugs. I like hugs.
Friday, August 7, 2009
Another beautiful sunrise. Another gorgeous trip to the chilly sun baked beach. Another opportunity to be brave and positive. Another moment with my boys. Another four year old hug and kiss. Another moment of having a child run towards you yelling out they love you. Another opportunity to teach someone little something new. Another surge of pride as you watch your children play, helping each other, hugging each other. Another hug from a caring, understanding husband.
Another day. Another opportunity to realise how lucky I am to be here.
Tuesday, August 4, 2009
Oh how I have missed you all, and what dramas we have had. The twins have been given a start date for morning kindy, which means five mornings a week I'll be home alone. I'm not sure I'm quite ready for that yet. Only one more step and then it's school. This time next year they will be a month away from turning five. How did that happen?
I had the flu. Now I'm not supposed to say it was swine flu since it is no longer tested for, and people that have been around me may have panicked. But really. I was so sick, even with tamiflu. I got a chest infection. It came on really quickly and I'm still fatigued after a week. I've had my flu vaccination this year.
I also now have a quicker follow up with my cardio due to some rhythm issues this morning which took me from being not so polite to the receptionist at our local doctors office to our local A&E.
Today is Claire's birthday. Happy birthday Claire!! I'm still thinking about the delicious meal Claire made me for my birthday. Yum :)
Hmm what else. It has been quite some time, too much time in fact and I'm struggling with my beta-blocked brain to remember what else has been happening.
Lets leave it at this. I'll be back.