Saturday, December 29, 2007

Deep Feeling On New Years

Please...anyone who wants to see the photos I added refer to the post before. I wouldn't usually do another post so quickly but I feel like I need to just talk about my feelings here. I hide them so well at this time of the year but I become overwhelmed by them and then I burst out in tears. I have had a good Christmas. I am very interested to know if any of FA families or FA adults feel this way...the way I will explain.
Every year I feel this way. I watch people celebrating New Years and going to their events and having a good time but it never seems to change the way I feel about New Years and it is with mixed emotions that I enter the New Year and go to a New Year's Eve celebration. Today I have had a tough day. I have felt really emotional and had tears. I have whaled a bit while crying. I am gonna share this and I hope no one thinks I am silly. New Years has 2 different meanings to me......as an adult with FA I made it through another year. I am alive and thank you Lord for that. Then with mixed feelings I am overwhelmed by grief at having FA....grief at having pre-leukaemia and lower counts...grief at what FA may bring this year. Why do I feel this way? Well....it is pretty clear why with what us FA people have to go through...also because I know that in about a months time it is time for my annual bone marrow biopsy and aspiration and I start getting anxious like I am going to have a heart attack. I feel panic because it is SO close...and what are those results going to hold for me in this New Year? What will the New Year be like? Now, I don't have as regular biopsies or aspirations as people would who have pre-leukaemia because I have chosen not to transplant and I could not handle the constant anxiety of receiving results on my blast count all the time. So I choose to still do biopsies etc so that I am in the know...but so it doesn't constantly rule everything in my life...because we my type of personality I would be a wreck all year! The last 3 days I have felt really stressed and anxious and emotional...and then today when I was talking with Alan all these feelings came out and I knew....New Years is different for me....I watch my family celebrate and feel like other people do not have to cope with these feelings as they are at a New Year's Eve event but without a doubt every year....2 or 3 days before and on that night...I have felt these emotions of "can't believe I am still alive" and that is good but also, "oh no...what does the New Year hold?" I don't share these feelings because I don't feel like people would take these feelings seriously and would just dub me as depressed....but New Years is a VERY emotional time for me and I have these things going on in my head all the time! I look at my son and worry if I will be here for him the next year...I look at him and marvel at how I was able to spend this year with him! The other hard thing about New Years is that I am really tired from Christmas. 5 days is not enough to recover from the huge days out that you have with Christmas celebrations. I enjoy Christmas more than New Years....I save every ounce of energy for the Christmas celebrations. Christmas means a lot to me....its meaning of hope and I feel so encouraged....but I am so discouraged that I feel so discouraged in the lead up to New Years. Sometimes I just need to relax but I can't handle being too alone on New Years.....but I get so tired and get worried I will not handle it........although I know that as long as you have someone to spend New Years with....it doesn't matter. My mind is working hard.
Some people would say, "Just trust in God".....however, I believe I do. Sometimes trusting doesn't always stop the thoughts and feelings and also...God is God....I also believe that He can do what He wants to do....how to we explain FA children passing away.....when it is their time. Yes, we can pray and God can change things. He is God. I don't think I have the wrong view....we have prayer meetings every week to pray for my healing but God is God....and in the end it is all His decision........"trust in God" and do what you think God is telling you for your life. Sometimes the heavy load of having FA and the question of when is it my time makes me feel anxious..........that is because I want to live. I want to live as long as everyone who doesn't have FA....it doesn't mean I don't trust God! Some people would say that I don't trust God if this is what my mind is doing and I actually disagree with that point of view. These feelings are real and God...Jesus my Saviour knows that this is all very real for me...and I honestly think that Jesus will honour me for being so honest. I may seem very deep in thought today. New Year is a happy time but it is also a grieving time....they are mixed and I am sure that some FA families really understand that. We try and make the best of New Years even though we have some feelings and thoughts that are hard to contend with.......and that is ok......it is ok to feel this way. That is what my pyschologist used to tell me. It is ok to admit to feelings....it doesn't mean that I am not making the best of everything or enjoying stuff. I enjoy things more if I admit to these feelings because then I have vented things and are not "alone" in my thoughts which makes me feel more released.
Ok, I have talked alot. Thanks for listening and have a good New Years even though I know there are many people out there dealing with loss of Children and adults.....this is the first New years without their children or partners or wives or husbands.....and then there are the people fighting for their lives amongst the celebration! I just wanted to say...I understand you people and it is ok to feel that way. We still celebrate...but there are mixed emotions and that is ok.
Bless you guys,
Happy New Year.
Love Charisse

Assorted Photos!





This is tonight. We spent a big day out at Alan's birth Father's House with his partner and Uncle Darren and Aunty Angela. It was a good day. Isaac got new PJ's from Grandapa and Angela (Alan's natural father and partner) and I got a new dressing gown which I love. I have another dressing gown at home but it is more of a winter one so it is wonderful to have for summer. I am so pleased. Isaac and I got in our PJ's not long after we got home and we were actually trying to take pictures of Isaac in his new Thomas PJ's because he looks so cute but he wanted photos of us together in our new stuff instead. So Isaac and I are laying on the main bed in our bedroom and Jerry his cat, came to lay with us too. Isaac also wanted us to take photos of Jerry. So this is Isaac, myself and Jerry!






This is Isaac on my bed, wearing his new PJ's but he insisted that his little lion friends have a photo with him...."Rouchy" and "Gordon"...hehe...I think this is a sweet photo of Isaac's face. Oh and I didn't mention that this gathering we had today is our belated Christmas gathering because we have trouble fitting in 3 families on Christmas Day....that is why we were giving and receiving presents.



I think that my neck looks fat in this photo, however, it is still a very sweet photo. Isaac wanted to gaze at his mumma and have a photo taken.








I think this is a sweet photo. Isaac is in his new PJ's ...not that you can see them but I am in my new dressing gown and Isaac gave me such a sweet hug. I really think I look like my mother in this photo. The smile is exactly like some of her photos when she was younger! Amazing. My hair is a bit ruffled....hehe.
Anyway, we had a great time today. Thanks to Aunty Angela, Uncle Darren, Grandpa Ian and Angela.....and of course....Nanna Howard-Jones to..or great Nanna to Isaac. It was great.
Thanks Teresa for talking me through how to add photos because I finally did it just not with my holiday photos. Now that I am confident in adding photos I will do this a lot more! Anyone who wants to know more medical updates for now please refer to the post before hand....and I will also get to post thpse photos of Alan being the donkey on Christmas Eve with me as Mary and Isaac as Joseph!
Bless you all
Charisse

Wednesday, December 26, 2007

A Howard-Jones Christmas!

Merry Christmas everyone!
Well thought I would update on how Christmas actually went.
We went to our Christmas Eve Service at church on the 24th and it was very nice. Isaac did so well at being Joseph leading Alan who was the donkey, down the isle with me on his back as Mary....hehe....a lot of the people in the church roared with laughter. We have very different cultures in our church and I suppose some found it quite funny. Isaac was so sweet as he laid our "baby Jesus" in the manger to the music and we all sat there waiting for the music to finish after we had walked to the manger. It went very well. Isaac was a little embarrassed at the laughter and I had to explain they were not laughing at him but probably at daddy's ears that we had for him to be a donkey..and he was ok with that. Isaac did SO well.
Christmas Day. Isaac didn't wake til 0730am which was a nice surprise for us...especially Alan who gets up when Isaac gets up to let me rest a little longer. Isaac apparently ran into the presents and the tree and then woke Alan up saying excitedly that there were presents under the tree and they woke me at 8am! We went into the lounge and opened presents and Isaac was very excited to have "James" the engine from the Thomas series. He has been waiting so long and was so excited. He got a new helmet which is a nice red and he got a big swing set for outdoors...he was so sweet, "Santa knew I didn't have one yet" he says.
We had the morning at home as a family and then rushed off for lunch on the other side of town with Alan's family and extended relatives. It was so busy. Lots of present opening and food and family and laughing and talking. We only got home around 6pm and then we rushed off to my family's do for Christmas dinner. Isaac had not yet had time to play with his new toys...especially James. We left and forgot 2 presents and we felt a little stressed and Alan came back to get them...we got to my sisters and we were very tired right then. Isaac had not slept all day and you know what it is like when they have not slept.....also he had not had any "time alone" time. He had had people in his "space" all day so when we got to my sisters his behaviour was saying that he needed time alone and needed a break from the people. A few tears between the cousins...a cuddle in the end room....opening more presents for the children and finally....SLEEP TIME for Isaac. He was not sure about sleeping where he was so I lay with him for a while...after a short time he was asleep....ah yes...now adult time. So we had dinner and then opened the adult presents and then we went home after midnight....Alan and I got to sleep at 2 am that morning and I am exhausted two days later. I slept in yesterday but today I have actually felt nauseated all day and aggitated! I know that Christmas Day was a big push for me and going to bed VERY late. BUT...it was fun and I had a great time except for the brief moments of stress that evening with me feeling exhausted and Isaac really tired and forgetting the presents...but it worked out.
Now....getting ready for New Year's Eve. We have a special service with church every New Years....an African tradition. We never used to have this and we would go to Alan's family or have something at our house...and all our friends used to come. I must admit that I do miss that quite a lot. However, for the last number of years we have gone to this service. The Africans love to dance at midnight. They are quite party animals. It is fun...it is a BIG night! Alan and I are planning on leaving just after 12 mid night and are trying not to stay. It is hard when you enjoy yourself and have to be strict about leaving for health reasons....like me getting totally exhausted and taking twice as long to recover from it....but we try and be more strict because of the after affect it may have on me. So that will be New Year's Eve...and then New Year's Day we will all be at home recovering from the big do.....back into normal living after that. I start with appointments in regards to my surgery on the 21st January...the specialists I must see to prepare for the surgery. May be I will work a little before the surgery. Being on the casual pool for nursing can sometimes be slow around Christmas and New Year and January.
Well, I better go. We have mum and dad coming up to have a BBQ and use our new outdoor table and chairs that Alan got for Christmas from mum and dad.
Thanks for reading! Merry Christmas and Happy New Year!
Love Charisse

Sunday, December 23, 2007

Merry Christmas!

Hello Everyone!

Well I had my GP check the lump under my arm and he reckons, without a doubt, that it was an infection and he was SO surprised that I had waited 5 days to have it checked because it could have been very serious for me. He added that he was very pleased to see that my body had fought off the majority on its own. It has gone down heaps and is not firey or sore anymore..just achey. I don't feel nauseated from it anymore either.

Well, it is Christmas Eve. In an hour Alan, Isaac and I are off to our Christmas Eve service at church. Alan, Isaac and I are doing the nativity scene to "Away in a Manger". We will walk down the isle and Alan will be dressed up as a donkey, me as Mary holding baby Jesus and Isaac leading Alan, the donkey, dressed up as Joseph. I hope Isaac doesn't get stage fright!

Tomorrow is Christmas Day! Yay...Isaac is excited and can't wait to see whether he got "James" - one of the tank engines from the Thomas series.....yep...we won't let him be disappointed. He is getting lots of exciting stuff! I can't wait to see the excitement on his face.

Alan and I are both excited as well....lunch with his family and dinner with my side of the family. It will be great. Then in a week...lunch with his biological dad and family. It will be great!

Ok, got to get ready for the service! I am WELL for Christmas!
Love Charisse

Friday, December 14, 2007

Medical Update

Hi All!
Ok, had my infusion (IVIG) yesterday and it went better than last time. I insisted on the nurses using the vein that I pointed out and running the infusion at the lower rate that I preferred. I even checked the pump and was going to change it if they didn't listen to me! However, the doctor and everyone listened to me today and it was relief. I was so nervous about going. There have been some VERY grumpy nurses. There are specifically two nurses who are in their 40's and 50's who are grumps and I actually get nervous going to infusion because they make me feel uncomfortable! One turned to me very seriously and said, "we like it when people complement us but when they tell us we are doing wrong we become offended". I was shocked because I feel like they always get cross when I am not happy with the care and then I become scared to ask for something or when I feel sick from infusion. So Thursday night at prayer meeting I asked for us to pray for a nurse to be there who was nice. I know the names of the ones who are nice too. When I went yesterday that specific nurse was there and I have not seen her for ages. She told me that she was not rostered on for today but got called in! What an answer to prayer!...hehe....it really was...she did my jelco and was so nice and happy and set my rate and made the day a lot more comfortable...praise the Lord. That little answer to prayer really helped me endure the IVIG a lot better. The doctor increased my pre-meds which I think helped.
Although last night when I got home I felt much better, as the night went on I became anxious and over the Christmas shopping and all! I don't remember much from last night but Alan was telling me more about it. I really wasn't myself last night and the infusion does that to me. I have been so normal the last 2 weeks...it is odd when you suddenly change. I was uncomfortable and aggitated and weird...was definitely infusion and then when I woke this morning my muscles were all twitching and shaking and I woke up with a really sore, reasonable lump under my left arm which makes me feel nauseated when I touch it! It is quite big and was not there before infusion yesterday. So I am guessing it is an immune response to the IVIG infusion and is my lymph node that has come up really hard and sore. The IVIG is human antibodies so technically every 4 weeks I am receiving a foreign antibody and immunity so my body has an immune response (just like babies when they have their immunisations) and it responds with headaches or flu symptoms, confusion and aggitation, muscle spasms and shaking and of course, the lymph nodes coming up. I will go to my GP this week to check that it is just the lymph nodes...as I said it was not there yesterday and only this morning....must be related to an immune response from infusion. So I feel all weak today when yesterday I woke up feeling so strong before infusion....infusion really does affect me strangely for a week...the immune response to it...and then after a week, the infusion strengthens my whole immunity so I can live without many more infections for the whole month! It is so strange how things work.

My big gynae surgery has now been re-booked. It is gonna be on the 21st January...only about 5 weeks away. Pre-anaesthetic on the 17th! An appointment with my haematologist in regards to any bloods that may be needed on the 4th of January. It is a private operation so I won't go into any detail but i am excited and scared all in one. I will have a rather big abdominal incision. It will be interesting to see how long it takes to recover but I am anxious to have this surgery out the way. It is two weeks before Isaac starts big boy school. We thought it was wise to do that because if Isaac starts school and I suddenly have surgery he is likely to worry about me while he is at school and want to be home. So if I have it in the last 2 weeks of his holidays he can be involved and know I am not sick, just having surgery and can spend as much time visiting me as he would like, feeling reassured. The pneumonia bout 5 months ago really scared him. I should be home recovering by the time he starts his new school and reception...and I can try and support him more rather than being in hospital. SO that is big news.

Did I say Isaac got his "preschool diploma" last week. He graduated from preschool....so cute. He cried afterwards and said he was sad because he wants to stay at preschool and not go to school. He is now on 7 weeks holiday before he starts school.

Well, I have almost finished my Christmas shopping and will be glad when I am done. It has been overwhelming at the shops! BUT, I must admit...really fun.

We went swimming with my neice again this past Tuesday. Isaac always enjoys that.

Ok, I am a little tired from the computer and need to finish looking decent before Isaac is up from his afternoon sleep!
Thanks for checking up on us....
Love Charisse

Wednesday, December 5, 2007

YES!

It is SO good to have a good week and feel good. This week has been good. I have been very proud of myself. I managed to get to morning church for the first time in 4 months on Sunday. I had been too tired from being sick those many months ago and had not managed for 4 months to get up in the morning. I have not been at work for about 6 months. It has been a long time. I think the QLD holiday did me well. I managed very well at church. I have been going at night time for 4 months and to a different church. Our church didn't have night services. Not only did I go on Sunday morning to my own church but I didn't wake up terrible the next day. I managed to go to the photo shoot that we had booked for Alan, Isaac and I on Monday...enjoyed that. Isaac giggled at the photographer all the way through. We then went to my sister's house after that and that was enjoyable and came home. Tuesday I felt a little weary in the morning but endeavered to get out and go swimming with my mum, my neice, sister and Isaac. We were out til 3pm and came home...Isaac had a sleep and then we went to my first celebrations night for Isaac's preschool and the school affiliated with his preschool. Isaac did an item with his class at the big assembly called "Fancy Dance" and he was so cute dancing. I was trying to video him and it shook because I was laughing at Isaac dancing! Today, Wednesday, we took Isaac to the "magic cave" where our main Santa is and lined up for Santa. Well, finally, I am exhausted and my body is telling me to spend the rest of the week at home. Buy what a great effort!
I am hopeless at loading up the holiday photos...but I WILL (you think, "yeah right!"). I also will upload some pictures of Isaac dancing....hehe.
Ok, just wanted to let you know how I am!
Love Charisse