Thursday, May 25, 2006 7:53 AM CDT
***update***
Monday 29th May
Just thought I would update quickly. I had a very stressful week last week. As a result I am very tired. I feel like I have pulled every muscle in my chest and back and now I have yucky mouth ulcers in full bloom in my mouth and my lip is slightly swollen...lips going dry. I actually feel quite miserable. I know it is the aftermath of me being very stressed last week almost every day. I was very emotional and had some panic attacks. Now I am paying the price...so it seems...but as my pyschologist says and my family says..."dont' beat yourself up, you have been through a lot and are dealing with a lot". Thank you guys for being there when I am miserable. Thanks for reassuring me. I really do appreciate it.
Please pray for my mouth. It is really sore and quite swollen inside. I feel quite miserable. Otherwise...I suppose you could say,....things are going ok.
Bless you guys,
Love Charisse
***
Hello All,
well this week has been a very emotional week.
First of all..my IVIG went well and I had no bad reactions this past week...in fact I reacted better to the stuff than I usually do.
I had another type of doctor's appointment on Monday just gone. I am deliberately leaving out specifics because I don't really want to talk much about the topic. Anyway, I struggled with the appointment and I think the doctor could have come down from the "doctor world" to consider what I go through with FA and life sometimes. I got very upset at this appointment. I was already anxious. I am not pleased to say that I yelled at him (nicely.....) and felt a bit aggressive and frustrated...sometimes you just think doctors don't "get it" and you feel harrassed and annoyed. I don't know this doctor and I know a main problem is that he doesn't know me and the anxiety that I deal with. However, my haematologist wrote a lot about that and he should have had his guard up more than he did.
You know when you feel like your heart and soul are hurting deep down and it is hard to tell someone how it is hurting and why...but you just cry...big bellowing crying. You just feel so upset you can't help it. It just comes and you can't stop it. Well the appointment set off some emotions that I tend to bury a bit...and then all the "Transplant" and chromosome changes and blast count issues and everything just dominated my mind and the emotions feel like they are out of control. Today I was crying and crying and I heard my beautiful boy, Isaac wake. I tried to mop up my tears and stifle the sniffles but I just cried deep cries even more. I thought if I ignored Isaac...he would think something was wrong. SO I walked into his room and he looked at me....and I said, "can I have a cuddle?"...and through my tears as well. He reached out. Isaac is so compassionate and I praise God for him. He will sit there and mop my tears with his hands. He won't expect anything. He just gives me a hug. He is so compassionate. I talk to him about when mummy feels a little sad about being sick. And I tell him I love him and love daddy...I am sure Isaac knows that I am not cross at him and love him. He never reacts badly....he is so sweet....and then all of a sudden when the tears finally stop....we will be laughing. Isaac gives me a grin and I can't help but kiss him on the face and we laugh and end up playing tickle. What a God given treasure Isaac is. I always try to not let him see me crying but when he does see me...I think God is so gracious...and Isaac is so compassionate...he knows it is ok.....I am just emotional....and I think God protects him. Everyone who meets Isaac sees Isaac's joy. He feels stable and never acts weird when I am there or even with other people. It is such a relief. He is such a comfort. I am so glad that I have Isaac. What a joy he is....and he blesses me with our close relationship. We are each other's buddies. Praise God that Isaac is such a sweetie and that God protects him when he does see me cry.
For those who don't know me. I am not crying all the time! No, I actually do love my life. I enjoy being a mum and a wife. I long for more children. Isaac and I have a great time of going to playgroup and kindergym....oh and how hyperactive has he been! He has been so active and laughing and especially...I think our cats are a bit annoyed. Ha! He runs after them all the time and when they are outside he demands that they are inside.....and when he is outside...they must be outside...they must play his games.
In the background transplant and procedures are still being put into place while we wait on what God wants us to do. We still strongly believe in the healing power of God and never want to restrict what He wants to do by "not listening" and just going ahead with things. We are waiting for His divine timing. But I struggle with transplant so much. It is so hard guys. I am really having a difficult week. I really struggle.
But Praise God that I am 28 and married for 7 years and have a baby! God is good. There is hope...it is just that sometimes it feels lke the hope is gone. If I focus on the things of this world I feel so discouraged. But if I focus on the things of God I feel hope and love and encouragement. Jesus is an awesome God. If you don't know Him....I encourage you to seek Him. There is no peace like the peace that you get when you have Jesus.
I want to thank my husband, Alan for being such a support to me spiritually and physically. We face so many decisions and yet Alan is so set on helping me, guarding my heart with what matters to me and seeking God for the right direction in our lives. I can pour my heart out to Alan and feel reassurance come. I thank you Alan for being my husband and for being a great daddy!
Well, wow, I have felt emotional just writing this update. It helps to know you are all there and all supporting me as well. Please write in the guestbook to let me know you have stopped by.
Please keep praying for Nicholas with the pneumonia he had. Please keep praying for Ryan in NZ....they said on their update that it looks like his engraftment may be increasing...Praise the Lord! Continue to pray for Robbie as they work out what is going on with his bloods. There are so many more FA children and adults that need out prayer. You guys all mean so much to me!
Well, now that I have written a book. I am going to go. I love you all.
Love Charisse
--------------------------------------------------------------------------------
Wednesday, May 17, 2006 7:42 AM CDT
Good Evening Everyone!
It was my birthday today! I am 28 years old and feeling very emotional about the whole thing. I am very happy. I am so grateful to Jesus that He has allowed me to still be alive and be married to a wonderful husband, Alan and have a wonderful child, Isaac. As you know many people who have FA do not make it into adulthood and as I face the challenges with my bone marrow chromosome changes and blast count...I count every birthday as a blessing and as a result have felt very emotional.
I got some surprise flowers. I had been weeping this morning about some things....and went to kindergym and when I came back some beautiful flowers were at my door..thinking they were may be from Alan....I soon discovered that they were from our dear friends Stephen and Leah who we have not been able to catch up for ages....as soon as I read the card I burst out in tears overwhelmed by the love that has been expressed to me over mother's day and my birthday.
Mum, thank you for the flowers....Alan thanks for my new CD of David Phelps...my favourite Christian singer who inspires me with my song writing and singing!
Thanks for the chronicles of Narnia and Isaac I thank you too since it was also from you.
Thanks for the special clothing, Liesl and Tim and thanks for the great novel....and mum and dad..thanks for the flowers and the beautiful cross pendent necklace! Wow...I feel spoilt...Denise..thank you for your love and friendship. I look forward to our special day tomorrow with lunch! I have so much to be thankful for. You guys have gone out of your way to make me feel special. I have tears writing this.
My appointment with my haematologist on Monday was cancelled due to my doctor being "snowed" in at NZ! I did have a panic and been feeling vulnerable not having him around for my infusion that will be happening this Friday. But he has spoken with the doctor that I trust at the hospital about what to do if I have another bad reaction. I am very nervous about this...I don't want the headaches...please pray against them.
Also, I have exciting news. Alan and I have started a charity for FA Australians. Australia itself has had no support for FA. FA patients have been lonely and caught in emotions that no one has understood. I was so lonely growing up without support with FA. These patients have needed people here that understand and can direct them to proper doctors for FA and also understand how they are feeling. We are connecting patients together and families are meeting each other. We have a proper board of directors filled up with haematologists and lab technicians, a psychologist, a minister and eventually nurses and many more....we had our first board meeting a couple of weeks ago and we will be looking for grants for certain things...may be even research grants...the paper work is filled out and the official opening of the charity was in February just gone. This is exciting and we are blessed that God has chosen us to do this. It has been much needed.
So if you want to check out our website that is still being put together just go to www.fanconi.org.au
Well, that is all I have to say for the moment. Bless you all. Love you all and take care.
Please continue to pray for Nicholas Boggs who has had pneumonia and Robbie whos counts have dropped and they are trying to work out what was going on and Ryan in NZ who engraftment had dropped to 21% and they were waiting on the doctors cue as to what to do next.
Pray for all these people.
Bless you and good night.
Love Charisse
--------------------------------------------------------------------------------
Sunday, May 14, 2006 6:35 AM CDT
Hello All,
Happy Mother's Day to all those mothers out there!
Yes, I had a great mother's day today! Alan and Isaac woke me up. I had breakfast in bed with bacon and eggs. Isaac ran in announcing it was "happy birthday" with the present. Alan and Isaac gave me a beautiful, gold locket with "special mum" written on it and "with love always"....and it had some lovely pictures of Isaac in it. I also got some fluffly, pink slippers! Haha!
We went to church and I got given a flower to put on my top! It was a good service.
Came home and checked in on Alan's mum...Denise...Happy Mother's Day!
Had a family dinner with my family at home! Thanks Alan...what a great 3 course meal you made! It was lovely and I felt quite spoilt! So did mum and dad and Liesl and Tim I am sure!
Well, on Friday night...I am back tracking a bit...I had my b-day dinner with the family..both sides...and I really enjoyed having them all there.
Thank you to Mum, Dad, Alex, Denise, Liesl, Tim and Darren....and of course Alan and Isaac.....for coming to the dinner because it really meant a lot to me! The rest of the family who could not make it...that was totally ok and thank you for trying to come! I appreciate you all!
My b-day is actually on Wednesday this week! I will be 28 years old! Ha!
Tomorrow I have a haematologist appointment and on Friday my IVIG infusion. I sure hope I don't have that bad reaction again because that was not fun!
Otherwise, bless you all and goodnight!
Love Charisse
--------------------------------------------------------------------------------
Friday, May 5, 2006 2:08 AM CDT
Well this week has been fun!
I had no appointments this week. I was SO busy..just having quality time with Isaac. He is such a dear boy!
On Monday Isaac and I attended a new playgroup. It is very new so there were only 4 other mums there as well as myself. It is so different to kindergym. Kindergym is always on the go and you always are watching your kids climb over all the equipement and you are always interacting with your kids. At playgroup...well at this one....the parents sat around more while the children did activities....the parents had free tea and coffee (not that I drink that..I am a hot chocolate or milo drinker). I actually did help some of the children interact together and build train stations and blocks and all...I am so used to being on Isaac's level...I get nervous settling down to talk with the parents! Ha....it feels weird.
Tuesday my mum came and helped me. That was a pretty relaxing day. Alan had a business meeting on Tuesday night and so did my dad...so mum cooked me a new recipe and Isaac, mum and I had a candle light dinner (really it was to try and disguise the brocholi I had hidden in Isaac's scrambled egg...hehe!)...but it was nice...mum's recipe was nice...thanks mum!
Wednesday Isaac and I went to our usual kindergym session! That was fun because it is not new and I know the mums and we always sit down at the cafe for lunch afterwards and they are my friends as well as Isaac's friends. Isaac ran into kindergym and yelled "hello" to all his friends since we have had a 2 week break with school holidays!
Thursday, Alan's mum came and visited me. I slept in and we had a nice day around the house. Isaac pulled the curtain in his room down and Denise and I carried out "operation curtain"...Denise did most of the handiwork....hehe...she did very well...so that was the excitement for the day.
Friday, today...nanny Jean came and I was supposed to go to work but the hospital told me they didn't need me today.....so I was at home and we decided to go to another play group and check it out. Isaac did painting and played with play doe.....well...got to get going...got a birthday party on tonight. I have been feeling much better this week! It is so good to feel well....I sure am not looking forward to my next IVIG...thank the Lord that I extended it another 2 weeks.....
Got to go!
Love Charisse
