Hard Day/camp sunshine

Hello Everyone,
it has been a tough day today and I thought I would write in my journal to release some aggitation that I have. I woke up this morning feeling down. I felt like I needed to stay in bed. It has been good that the IVIG reaction has not been as full of pain as last time but it still has been at a level of high aggitation. I was struck with such sleepiness. On Monday I woke at 11am and went back to bed, fell asleep til 3.40pm...Tuesday was a bit better but I was still very tired and sleepy...then today I just felt so down about it...I have also had a constant headache since the last IVIG reaction and I have found that the pain killers they have given me are not helping...and today I had pin prick feeling in my eyes...I just finally felt real upset today and cried and cried. I hate it when I cry and Isaac sees me. I have been holding up well and today I just broke down. I cried about lots of things...this is when you can tell you are sick of what is going on. I was aggitated that someone would not just fix my IVIG reaction...I wanted to go to the hospital...as you know that feeling is not like me...I can't stand being in hospital...but I wanted help to get rid of the headache and to stop the feelings that I am having and I was anxious about having another IVIG because I can't stand how I am feeling afterwards.....I would be a terrible transplant patient...I would have no patience and would be anxious about everything..I am not joking but I honestly think I would have to be sedated all the time if I had a transplant! The fact that I get so emotionally worked up with health issues and depressed really worries me when it comes to long term, serious treatment...it is a great concern for my doctors and for myself! Anyway, got side tracked....we are not considering transplant as you guys know...but I don't want to discuss that.
I started crying about my hair....I had my hair cut around Christmas time last year and layered and blonde streaks put in. It made me feel fresh and good about myself. My hair becomes very heavy and I have trouble putting it up ...I am sure I get a headache from it. Well we have been tight financially and I asked the hair dresser how much it would be to re-do my hair...and when they told me I felt so upset. I have been habouring my little "upset" and "worried" feelings about that for about 3 or 4 weeks....and trying to save up my stash of money for that...today I broke down in tears about how I would not ever be able to have spending money if I have to pay for my hair...and I got all upset and anxious. I feel really yucky with my hair like it is right now....and I need a hair cut and I would like some colour put back in it again. I think it is important for me to feel good about myself. I sometimes have such self esteem issues with having FA that I get very down...and when you have treatments that make you feel yucky..if your hair is yucky...then you don't feel good. Alan said we can spare some money from general account to go towards my hair....I don't mind putting some of my money to it but was frustrated about the whole thing. I suppose that might all sound really stupid to you all!!! I don't know...but I know I was very emotionally charged today and it was a huge issue for me. So, I hardly ever pamper myself and will go and get my hair done and I know I will feel better about myself.
I said in one of my other journal postings that the little things matter...and they do...they really matter...sometimes they matter abover all those treatments that we have with FA...above all the serious bone marrow issues, high blast counts, pre-leukaemia...these things that occupy our minds...but the little things matter more I think...because these things are things that help us to enjoy our lives.....without them....we have no hope of enjoyment....can you imagine living every day thinking about how you will die???? It is horrible. I would rather have wisdom with my health and think about how I can spend time with my son and husband...how to have fun, make friends and do something with my life.
I think that having friends is SO important. I think not forgetting your friends is very important and making them feel like they are important. I think that relationships matter.....why am I saying all of this. People, please treasure your relationships with your friends...whether they are in the same country or not...treasure their feelings....treasure them....some of us have serious illnesses and really need your friendship....some of us won't live as long as others...we are such important individuals.....and we get caught up with things...but always remember how much of a blessing you can be to someone else....I might sound like a crazy person writing all this...I needed to vent tonight. I have felt so emotional....some things may not make any sense...but I still needed to say them....and even now as I have tears in my eyes...I know that my emotions are stirred up tonight. Treasure your family...love them....because you don't know whether you will see them the next day.....with stuff like FA...I never know what is gonna happen....I am gonna live it to the fullest! I didn't realise how upset I am feeling tonight...how emotional. I know this is a long entry but please bear with me as I get it all out. YOur support is important to me.
Alan and I have some other stuff that is going on as well....first of all...we will not be able to get to camp. Alan has told me it is now a slim possibility and the reality of that today hit me.....I felt lonely...I feel lonely from all my FA friends. I live so far away. It hit me and my heart feels like it is hurting. Sometimes suffering all with FA is SO hard when you are so far away and when you are told you can go and then you can't...and you miss everyone so much...it is actually painful. May be because I am so emotional tonight...it is hitting me more. Alan and I will be trying to get to the states sometime next year for a holiday I hope...but it doesn't look like I will be at camp. Everyone will be seeing each other and having support and I feel forgotten here in Australia...boy I am emotional tonight. I am here alone. I am upset tonight....and I can't stop the tears from coming...I am opening my heart with how I feel....I am upset...I wanted to see you guys.....I wanted to have support....I wanted to sing to you...I have a song that I wanted to share so badly and now I won't go.....why am I sitting here crying!!!

Yet, has God got other things in store for me while you guys are away at camp. May be...and that is exciting and scary. Something I can only keep between Alan and I. It is something big. Life goes on....this thing matters just as much or even more, I suppose, than coming to camp...something that will lead us on in the future..a decision that is exciting for us.

Most of you, if not all of you, know that I am a born-again Christian. Jesus is my Saviour...He is Lord of my life. I would not have gotten to where I am without the guidance of Jesus Christ my Lord and Saviour. I know some people think that is strange...but I want you to know that He is real and He loves you...He loves me and He has done many miracles in my life...He has given me the strength to refuse treatment that may fix my marrow.....in all this stuff...working about whether to transplant or not....to go forward with the plans Alan and I have or not...I have been reading my Bible as often as I can........and I have found comfort in some passages that God has in the Bible.

Nahum 1:7 " The Lord is good, a refugee in times of trouble. He cares for those who trust Him"

John 10:14 " I am the good Shepard; I know my sheep and my sheep know me"

1 Peter 5:7 " cast all your anxiety on Him because He cares for you"

You know...Jesus cares for me...He cares about the little things in my life...He cares about the big things and He cares about me living my life for Him. having fun....He cares...I recognise Him as my Lord and He recognises me as His sheep...I am safe and the decisions that we are making are in His will...and He cares about those little things to make us happy no matter the seriousness of the sitaion. Jesus cares and will comtinue to lead me the way He wants me to go. I love Jesus because He helpes me make deicisons.

Anyway, that is me tonight. It would really encourage if you would write in the comment section...I need the encouragement tonight....I feel loneluy...it has been a very emotional day....please leave a messege am blessed you you take the time to do that.
Love you heaps,
Charisse

Isaac is funny/camp sunshine

I am sick!!!! Ahhhhhh...that is what I feel like doing. I caught Isaac's virus that he is recovering from. I feel awful. I woke up this morning and sat in the lounge and a tear ran down my face...you think that is dramatic? Well...you see I hate being sick or sore or anything else and sometimes I just feel fed up with feeling so under the weather..I only just got over most of my IVIG reaction...today I have been sleeping in bed most of the day and just got up to write in my blog.

Anyway, yesterday Isaac made me laugh. I knew I was coming down with something yesterday. I felt so strange...anyway....it is nice to have a little boy who brings so much laughter into one's world.

After his sleep yesterday, when I told him we had to go to his doctor for a check up he said, "but i feel better"...and I said, "Well we are going for a check up with the doctor and he can check your throat and your ears and tummy"...and he said, "will he look at my nose? It is big...it is big....and blocked...and my nostrils"...and he starts describing his nostrils..very interesting. My mum was in the next room and called out "what is he talking about"...anyway...it is actually really funny, My sister and Alan joke about nostrils all the time....Alan has even written a silly poem about my sister's nostrils and left it on the fridge...of course mum comes to visit and saw it and thinks we are all crazy and laughs....Isaac obviously was listening to me talk to my sister when Alan insisted I read this stupid poem to her on the phone....I realised that is why Isaac is now talking about nostrils and start laughing...now when I laugh I laugh hysterically...and Isaac finds this highly amusing you see....so he just has a big smile.....and then he will say, "mummy, stop laughing....shhh....no laughing...shh....stop"...in amongst this time I am trying to quit laughing and keep giggling and he will always say, "stop"...with a smile...and, "shh, shh"...it is actually really funny....I find it funny.

So on our way back from the paediatrician, I was strapping him back in his seat for the car ride home..and I don't know what he said but he pulled my face close and said something and smiled SO cute....so I kissed him on his forehead...he said something esle which was prescious and I started to just laugh..so much that I had to hang on to his car seat to stop from falling over...Isaac has a huge smile on his face and he has his finger up to his face, "shh...stop...shh...drive!"...he doesn't say this mean like. He has a huge smile on his face the WHOLE time and finds it very funny that mummy laughs like she does...and Isaac trying to tell me to "stop and drive" with the smile on his face makes me laugh even more...then he starts to giggle...anyway...this happens all the time with different things and it is really funny.

OK....now for serious stuff again. At the beginning of the year we applied for a grant from some place here in Australia ...a research grant because we are "FA Australia" to get to Camp Sunshine...a camp for people who have the disease Fanconi Anaemia"..that is what I have. We were accepted and our whole fair was covered for getting there. The a week or so later..they pulled the grant from us and explained certain reasons to us.

Then we applied for another one that one of their people encouraged us to apply for and said that we had a good chance...so we applied...today, to much disappointment we were declined that grant and still do not have any money to go to camp sunshine. I have had tears. It is SO difficult in Australia sometimes because we are pretty isolated here with FA. It is not easy to wip up $10 000 to go to camp. That is how much it would cost us to just get there..and I don't think that is a secret. It is expensive from Australia. I am actually feeling very discouraged. We have applied to camp sunshine like we would be there...we are planning to be there...we just need help with finances...so we are trying one more thing for finances and I honestly don't know what will happen...if this fails...well be will not be able to come. I will be so disappointed because I have never met John Hanna...and am really wanting to meet him. Hi John! Don't mind me...but I long to meet you ...as you know....and I won't get to see people who I have made friends with from 2 years ago..and I don't know when I would see them again. Teresa and Tyler and Kristin....my close friends..I really want to see you all...and it would definitely benefit FA Australia to have the updated research from the lectures and stuff....

Anyway, pray an hope...pray that this last "finance help" may help...otherwise I will let you guys know the final decision...but it may be a last minute thing you see...these grants and finace things often leave everything til the last moment..so it is heaps hard.

SO there is my whole update. I hope people are well and I will keep you updated as to what is gonna happen next!
Love Charisse