Tuesday, August 30, 2005

August 2005 entries

Wednesday, August 24, 2005 4:16 PM CDT

Saturday, August 27th 11.30am Adelaide Time

***UPDATE***

Hello there,
well I am back in Australia now. We landed in Adelaide at 10.30am yesterday. It is so weird because imbetween Australia and America we lost a day. So we left on Wednesday in Oregon and missed Thursday and it landed on Friday in Australia. It is now Saturday. I will write about my trip soon but I am so tired from jetlag at the moment it feels like too much effort. We were so tired last night. I couldn't keep Isaac up til 8pm like I planned. He fell asleep at 6.15pm and then woke at 4am crying, then fell asleep with Alan in bed for another 4 hours. At least he acutally slept since our night time was America's day time and I was afraid he might want to be up all night like he did when we first arrived in America.

Alan and I went to sleep at 7.30pm last night and I feel asleep with my light on it was so quick. I was acutally going to read my book but must have fell asleep so quickly. That is so unusual for me since I am often up to 12 midnight with anxiety issues and stuff. There was no room for anxiety last night because my body was so exhausted. I slept right through til this morning at 8am. I currently feel very tired and have been negotiating with my body all morning to have a shower but i feel like I may collapse in the shower so I have put it off. However, I am going to attempt to have one after I have finished here.

Well, when I have more time and feel better I will update my photos to include those from Camp sunshine and Oregon. I will talk about my experience with camp and I will tell you about our fabulous holiday with the Cliftons in Oregon. And yes, I will ramble on and on just like I am doing now......hehe. So have a great day to you all and chow!!

Love Charisse

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Hello Everyone,

I haven't checked my site for ages because I am actually still in the USA. I am only just finishing my trip in the states. So, for those of you who have been concerned.....anxiety and depression has not been the reason why I have not been updating. Thank you to Teresa Clifton who is allowing me to check my email and update today on her computer from Oregon.

We have been holidaying with the Cliftons and it has been really good.

We are leaving today to come back to Australia. We leave in just under 2 hours for the airport and then fly from Oregon to LA and then to Melbourne in Australia. Then we go from Melbourne to Adelaide which is where we actually live. So we have a long flight ahead of us.....I am a bit anxious about it. Also it has felt rather intimidating at the American airport since my family has been put down as needing special screening all the time and I find that very invasive and it makes me a bit scared. The airport hasn't felt very welcoming. However, security has been increased here in the USA since I was here a long time ago and it is strange being scrutinised so much by security. It can be scary. So I am trying to tell myself that I will be ok.

Our flight is about 19 hours or so....less than getting to the states.....we took 26 hours and 50 mins to get here because we went across the country as well to get to Portland, Maine for the FA camp.

It was really nice to meet you all at camp......Donna....it was a pleasure and I am so sorry that we didn't sit down and take more time to speak with you....I really wanted to do that.

Well, after I get back to Australia and recover a bit from jetlag I will actually write about my experience at FA camp and my holiday with the Cliftons in Portland, Oregon.....and I will update some photos as well.

I must be off....I just wanted you all to know that I am fine. Please pray that our flight will be fine and that I will handle the flight ok. Please pray that we will be safe. Please also pray that Isaac will handle the flight well and not cry all the way through. He is having a sleep at the moment and so hopefully he will handle things ok.

Bless you all so much. Thinking of you Donna and Nicholas, Maria and I am so sad to leave Teresa, Tyler and Emma. Isaac has played so well with Emma.....and Rachel and Nina...it was so good to be at your house yesterday and just visit.

Lots of love,
Charisse



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Monday, August 8, 2005 5:44 AM CDT


***UPDATE***
Wednesday, August 10th, 2005
Hello, well tomorrow morning Alan, Isaac and I leave to go to America for camp sunshine. I am looking forward to seeing everyone. We have a total of 26 hours and 50 mins flight time. I took Isaac to kindergym today to help him get rid of some energy. It is late afternoon now and I can't believe we leave tomorrow morning. So I will update when I get back.
Love Charisse

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Good Evening Everyone,

I am so sorry that I haven't updated for a while.....and it hasn't been because nothing has been happening. Boy, things have felt like they have been a mess since my last entry. Despite all the fuss that has been happening God is still good, all the time.

I have had a couple of things happen to throw me off, and I am trying to deal with them. Nothing Jesus can't handle but sometimes I feel scared......I will share about that when I am ready. However, please know that I trust Jesus with all my heart and love Him no matter what.


With all that.....I have had anxiety through the roof!! Unfotunately it really debilitated me for 2 weeks and I was having fainting problems and panic attacks all over the place. I am praying that all this is settling. I was so emotionally exhausted.....to top it off my L breast started giving me problems even more since my last entry and I ended up with a bowel infection and so I was quite unwell last week and the week before. I had difficulty looking after my son Isaac....all I could do was lie on the couch..I was in heaps of pain and the locum doctor (call out), couldn't do much for me so I ended up in hospital on Wednesday last week being treated for high anxiety, mastitis and a bowel infection and totally exhausted. Actually, it isn't very often at all that I get sick from infections.....it is not often at all....plus I knew that we were leaving for America this week for CAMP SUNSHINE and I was panicking that I would not be well enough.

Most of you know that I have a new doctor for admission to a hospital because my haematologist, Ben, cannot admit me at the childrens. I wrote in my last journal my first consultation with him during my IVIG infusion and I didn't much like him.

Well, he was away on holidays last week and so I actually got admitted under another doctor who is loud and jolly....that is the best way to describe him. I had seen him at the center where I get the infusions and I always used to laugh because he talks SO loud that you can hear whatever he is saying to his patient so clearly....you end up knowing about everyone!!!

So he admitted me......I am not one to like examinations at all. When I was a child I was touched inappropriately..and this has happened a number of times and so I am VERY choosey of who examines me. Parents please remember that as a child you are so vulnerable and when you have a disease, especially like FA, the doctors do invade our personal space and we feel really awful. It only takes a moment and the child feels invaded......so please remember the child and their feelings and try and make it as least invading as possible. I struggle with so many emotional issues from what happened to me. Although, I do realise that some things you just cannot help at all. So please don't stress.

This doctor was so nice and understanding and not forward or anything that I actually felt ok with him checking me out....which is so unusual for me.

So I started antibiotics and had bloods and an x-ray and began to relax and get well.....when this OTHER doctor came back from holidays!! OH NO!!!!

He discovered I was in hospital and burst into my room demanding that I let him examine me (and it was an invasive exam he wanted to do). I immediately felt scared and said "NO" and he continued to forcefully tell me that I had no right to say no and that I will do as he says and that I upset the other doctor with my emotions and restrictions and that I could die and all sorts of accusations......and he said that it is unacceptable that I won't let him look......far out..I wasn't even admitted under him!!! And he was wrong, I had let the other guy examine me and the other guy had done bloods and everything was fine.......this doctor also made some other unprofessional remarks....it was very inappropriate.....as if I would let him look when he demands just like that and with his attitude......we had a very heated arguement. It was scary and sent my anxiety through the roof!! He barged out and more happened but I will not say what happened.....and then the tears came and my mind said, "that is why you choose your doctors carefully".

I cried and cried and then the other doctor walked in all cheery and I started crying to him saying that i was sorry he was angry at me because he felt compromised like the other doctor said and this guy just sat down and said, "WHAT!!!"......I cried while trying to explain and hyperventilating and this doctor said, "I am not angry at all and I don't feel compromised. We did the right thing by you as a person and as a patient...we cared for your whole being". "It would not be right for me to not consider you as a whole person". He reassured me...said he didn't know why the other doctor was so cross and why he said that he was cross.....he spoke with me for ages and was really nice......he didn't put down the other doctor. He was very professional in his approach but he did say that the other doctor obviously had his buttons pushed and now I had mine pushed and we all need to just calm down. He was very sweet.

The doctor who got frustrated said to me that emotion just gets in the way of his medical treatment and there is no room for it. That was harsh. Especially when I am seeing a pyschologist over some pretty big stuff and need the understanding of my doctors.

I was so upset...the nurses had to try and calm me down...the other doctor ordered some medication to help sedate me more...the nurses talked long with me and Alan helped me.

The next morning Alan was there and the nurses had blocked my room so no one could enter....and when this doctor came back I was in the shower and Alan spoke with him for a long time. Then we spoke with Dr. Ben.....well it is decided that this doctor may be good for other people but is not suited to me at all....and will not benefit me but harm me.

When I left the hospital I decided that I should be polite and say good bye so I did....and Alan and I have been praying for him that he will soften his heart in his approach to people......he doesn't know that I am not going back to him yet....but Dr. Ben would like the other doctor who I got along with to help in stead if he can.....so we will politely ask and see. He is not a haematologist but just an oncologist but Dr. Ben said that all we need is someone to help with admission for infusions and Dr. Ben will do the rest (he is my haematologist). So the other doctor wasn't willing to let Ben be the main doctor...but this other one again, has no problem with the arrangement. Don't know what will happen. I am just relieved that I am not under that other doctor anymore.

So, my next infusion is the 2nd Sept. and hopefully this doctor can help Ben out.

Besides ALL the emotional stuff. I am feeling much more well and I have been packing all day for leaving for America this week....only 3 more sleeps and we are off.

I am so excited about camp sunshine now that I feel well again. It will be wonderful to meet so many people associated with FA, but also because I have grown to love so many of you and you have touched my life.

Bless you all.....and I am so sorry that my journals are full of so much emotion. I do still love life despite what I go through....it will eventually calm down again....of that I am certain.....Jesus is faithful and a loving God......there is no way I would ever be without Jesus.

Bless you all and love you,
Charisse