Hi There Everyone,
wow...look at my new blog. I am rather excited....dear Teresa did this for me....of course she asked me how I wanted it...but the end product so far is great...so I thought I would test my blog out! Do ya'll like it? I do...thanks Teresa so much for doing this for me...it is great. Now I just need to get family photos up and so on.
Update on my health...I ended up having the reaction to my IVIG which was the aseptic meningitis....I have had a hard week with pain through my eye balls and temple area and neck stiffness and back pain and fainting, hot flushes and ringing in both my ears...it has been horrible. We rang the hospital a couple of times this week because it was just so bad but there is not much we can do about it. I have had some steroid treatment to decrease the inflammation.....and pain relief...which was not working mind you....however, with that all said...today was a better day for me...I think yesterday I woke up and thought, "the reaction has turned the corner"..and today the pain relief is working and the pain has decreased again...so what a relief that this will be over soon.
We had lunch with Isaac's great Nanna today...Alan's Nanna...it was nice. I enjoyed lunch so much...it was a chicken dish..beautiful...so she gave me the recipe and I think I will try it. We don't get to catch up too often because she is so far away from us. It was nice for us to see her. We go to church in Woodville which is about 45 min from our home and she lived a further 25 min from there so we went there after church.
Poor Isaac has not been 100% the last couple of days. He has a cold again...but he also seems to have a problem with his bowel. I talked to the paediatrician and he thinks that Isaac's brain has learnt to give him the wrong cues with his bowel..so it is not going at the right time and is letting everything build up...I won't go into too much detail. Isaac had to have a laxative sachet on Saturday to help clean him out and then tomorrow....and then start a bowel softner regularly at a higher dose than what he has been on and this problem with the receptors of the brain and bowel should re-set itself in about 3 months time. Poor Isaac gets a belly ache and he doesn't much like this stuff that helps clean him out. I know that no person likes these things....these sachets. I used to work in Gastroenterology as a registered nurse and was always giving out bowel preps for patients having colonoscopies and they were not pleasant for the patient to go through at home before the procedure. I will do relief work there now but not permanent...like before Isaac was born...I work in a whole variety of wards right now.
Alan is doing well. He has been busy with lots of work. He has church work that he is doing....and his new business and his work that he works with right now. He does technically have Monday and Wednesdays off for family days...making the most of us all being together and we like that...but he often does some work on those days when I am resting and Isaac is at kindy.....
Ah yes....just in case anyone gets confused with my new blog and signing the guestbook type thingy....it is not called a guestboook but at the bottom of my entry it will have "comments" written..of what I can remember...and you click on that and it will come up with a box you can comment in....you can write in that and if you don't have a blogger account or google account...then just select "anonymous" and then you just type in those letters that it asks....and publish it....follow the prompts...that is so people who don't have those accounts can sign and let me know that you have been here.......I love seeing little messages. It encourages me.
Ok, got to go...that is my first blog written! How exciting. Have a good night or day....
Love Charisse
Sunday, June 10, 2007
Friday, June 1, 2007
Birthday Party
Well I had a good birthday party..."How to Host a Murder" night! It was great. We finished playing...or acting out the game at 12 mid-night and I didn't get to bed until 2.30am. I can tell you I was worried it would affect my health. However, I rested the next day....feeling totally exhausted. I had a great time. My friends all dressed up in the era that the game was in....we were all actresses or writers or producers of a movie...and while we were celebrating the movie that we were about to release at a pre-dinner event someone was "murdered" and we listened to a tape with the detective talking to us...it was up to us to find out who did it and he wouldn't go to the copes about what he knew about us. SO the murder mystery began with us following our prompts in our books and asking questions to gain as much info from everyon possible so we could make an accusation on who did it. It was fun. There were 4 rounds to the game...and each round revealed more about the people around you and you had to question their actions and then the whole group would talk about it. What fun! I would like to do it again. I feel like it was the best birthday! I really had a good time with my birthday...hehe
Unfortunately, Sunday I hit a downer. You all know that sometimes I become so anxious about life that I just go into a spin and have huge anxiety attacks...this happened for 2 days straight. I wanted to be sedated because I felt so distressed. We dropped Isaac off at nanna so he would not witness how stressed I was...something did trigger it all off....a doctor's appointment actually triggered it off but it was terrible.
What a contrast from a great birthday to complete anxiety.
There has been lots of chats with my sister and mum and dad and Alan and my doctors...to help me through what I am going through...not to mention the fact that I rely of Jesus, my God the most...because without Him I honestly think I would not be here....emotionally or physically.
I had prayer meeting on Thursday night and was able to share my intimate thoughts with them all and the amazing support that actually happened that night was amazing. I have been needing support with the intimate thoughts I have had and with my search with life and having FA for a long time and it was good to hear those people sharing this burden with me and really sounding like they understood to the level that they could. I felt more peace about things that night...that doesn't mean my struggle of having anxiety over life and FA is gone...but it helps when you have more peace over your decisions and how God is leading the way and your friends and family are supporting you.
I had my IVIG infusion today. What a day! It felt so long. The red cross got confused and apparently "forgot" that I have my infusions 4 weekly and never sent my stuff...I had to wait a lot of the day for it...then they could not get a jelco in for about 1 1/2 hours...they tried 5 times and finally got it...my arms are heaps sore.....I never bleed when they want me too! Ha...not because I have ultra high platelets but becasue it is just me...I don't seem to bleed easily or bruise easily...my body copes well...but today with two of the places they tried....they proded and poked in that one vein for a long time and I was bound to bruise....in both areas...when they were proding and poking in and out and around that vein I felt so ill....and very sore....but I closed my eyes and tried to breathe. There was more to today but it is all a long story!
Isaac visited me for the first time at infusion today and had lots of questions about the IV and the bandaides and "yellow" stuff (antiseptic) on my arm from all the jelco tries....he is so sweet...he didn't want to leave and said, "I need you mummy"...I told him that he needed to go home for a sleep and mummy will see you after I finish my medicine and be at home tonight.....he ran into the middle of the room at the center and blew me the biggest kiss...everyone in the room thought he was so sweet and was smiling and cooing and awwing and stuff....so sweet.
So not I feel wiped out and should be going to bed to minimise the reactions of the IVIG!
Bless you all and hope you are doing well.
Love Charisse
Unfortunately, Sunday I hit a downer. You all know that sometimes I become so anxious about life that I just go into a spin and have huge anxiety attacks...this happened for 2 days straight. I wanted to be sedated because I felt so distressed. We dropped Isaac off at nanna so he would not witness how stressed I was...something did trigger it all off....a doctor's appointment actually triggered it off but it was terrible.
What a contrast from a great birthday to complete anxiety.
There has been lots of chats with my sister and mum and dad and Alan and my doctors...to help me through what I am going through...not to mention the fact that I rely of Jesus, my God the most...because without Him I honestly think I would not be here....emotionally or physically.
I had prayer meeting on Thursday night and was able to share my intimate thoughts with them all and the amazing support that actually happened that night was amazing. I have been needing support with the intimate thoughts I have had and with my search with life and having FA for a long time and it was good to hear those people sharing this burden with me and really sounding like they understood to the level that they could. I felt more peace about things that night...that doesn't mean my struggle of having anxiety over life and FA is gone...but it helps when you have more peace over your decisions and how God is leading the way and your friends and family are supporting you.
I had my IVIG infusion today. What a day! It felt so long. The red cross got confused and apparently "forgot" that I have my infusions 4 weekly and never sent my stuff...I had to wait a lot of the day for it...then they could not get a jelco in for about 1 1/2 hours...they tried 5 times and finally got it...my arms are heaps sore.....I never bleed when they want me too! Ha...not because I have ultra high platelets but becasue it is just me...I don't seem to bleed easily or bruise easily...my body copes well...but today with two of the places they tried....they proded and poked in that one vein for a long time and I was bound to bruise....in both areas...when they were proding and poking in and out and around that vein I felt so ill....and very sore....but I closed my eyes and tried to breathe. There was more to today but it is all a long story!
Isaac visited me for the first time at infusion today and had lots of questions about the IV and the bandaides and "yellow" stuff (antiseptic) on my arm from all the jelco tries....he is so sweet...he didn't want to leave and said, "I need you mummy"...I told him that he needed to go home for a sleep and mummy will see you after I finish my medicine and be at home tonight.....he ran into the middle of the room at the center and blew me the biggest kiss...everyone in the room thought he was so sweet and was smiling and cooing and awwing and stuff....so sweet.
So not I feel wiped out and should be going to bed to minimise the reactions of the IVIG!
Bless you all and hope you are doing well.
Love Charisse
Thursday, May 31, 2007
May 2007 entries
Wednesday, May 16, 2007 3:54 AM CDT
Hello All,
It is my birthday tomorrow! Hehe...can you tell that I don't feel shy about that fact? I will be 29 years old and I don't take advantage of my birthdays...what I mean is...that knowing I have FA I am thankful and excited each time I turn a year older...it is such a milestone when you know that doctors often tell you that you will not live past 20 or 21 years of age. It is a blessing that I am 29...I have made it thus far, and I feel excited about that.
More good news...the Urinary tract infection is gone. My test was all clear! Totally.... 0, 0, 0 for everything that they tested! What a relief. I hope it doesn't come back anytime soon! My bad cold is also pretty much gone. I had to have antibiotics to help...but I feel heaps better...a little bit of a cough left...randomly my nose has stopped running and I don't have to blow it all the time and I am able to socialise again. I hate being isolated and at home.
I had a good Mother's Day on Sunday. I still have not got all my energy back from all those infections..I feel tired easily...so on Sunday I was a bit late to church. However, I got there. Isaac and Alan gave me breakfast in bed...a hot breakfast and Isaac gave me the most sweetest present/card for mother's day. He made it himself! It had pictures of him everywhere holding a sign saying, "Isaac loves mummy"....it was a pop up card...I have trouble explaining it..it is really something you need to see in a picture! I had a good day.
Today was also a good day....Isaac and I went and visited with a kindy friend and his mum. What a nice afternoon we had! It was the first time that this mum and I had officially gotten together without our husbands and I felt like we related really well. I had an excellent time. And then Isaac and I came home for his sleep time.
So tomorrow is my birthday and I cannot wait. A week from Friday I am having a "How to Host a Murder" Party....anyone heard of that...it is like a board game thingy...well you send out invitations to 6 people and they have to be a character that you choose out of the box...you come and act out the character to the setting that is provided and a murder happens and then you have to work out who did it out of the group of people....boy, what explanation was a bit vague...anyway, this is my birthday thing....I am looking forward to it.
Got to go...I am hungry and dinner is almost served!
Love ya,
Charisse
--------------------------------------------------------------------------------
Saturday, May 5, 2007 1:17 AM CDT
Ah yes,
isn't it nice when winter approaches and you start getting all the bugs?
I had someone sneeze directly on me a week and a half ago and it was direct contact, close up on my face...I went to the bathroom and tried to wash off thinking, "oh no....I may catch this"...and I did...I know Isaac has been sick for 3 weeks but I rarely catch from him...we must be immune to each other. So I have a bad cold...I mean I feel pretty awful.
I have done a shift at the hospital this month! I don't need to worry about that for a while. My contract is once every 4 weeks I need to do a shift...if I get sick they understand though. I try and stay away from the medical wards and only be on surgical...however, my last shift was in medical but I was not with patients that were dangerous to me....still I feel like I don't want to breathe when on medical.
I also still have the UTI...which is a pain. As you know I have asked the FA group what they can do about this and everyone has suggested cut back on sugar (I did know that)...take cranberry tablets..never knew about that before now...mum actually mentioned it and so did one of my doctors yesterday so I wanted to ask about it and the FA group know about it...so I am gonna start that to help with the UTI....and take acidophilus......to help balance that bad and good bacteria. Only problem is that I need to wait for the next pay to get all this stuff! What a pain! I am drinking heaps of water....just keep filling up my cup! May be we can finally get on top of this and get rid of the infection and let the neuts go up again finally! Things have been going around in circles because my immune system has been suppressed by this infection! What a pain!
I also had my IVIG late by one week and my IgG levels drop low...hence the reason why I catch things so easily. I seem to last even with low neuts if I have my IVIG on time. So had it yesterday and I won't be missing any more of that...strictly 4 weekly while winter is here.
Next week I go to work to get my free flu shot and I am set for winter!
May be I should start Isaac on Vit C to help with him being exposed to more bugs at kindy this year...he was not at kindy last year and so far seems to have a permanent runny nose!
Mother's Day next week...wonder what Isaac will make me or get me? Something small I should think...needing to save money a bit....then my birthday on the 17th! I am thinking of having a "how to host a murder" party...any of you heard of that....should be fun. We get to dress up as the character we are given.
Well, got to go.....I am gonna sit down and read some magazines and relax....Isaac is asleep and Alan is having a nap and I have just finished my devotions and thought I would read these mags my friend gave me.
Today is a catch up day....I have been so busy and may be that is why I have also caught all these things...need to take a step back.
Love you all,
Charisse
Hello All,
It is my birthday tomorrow! Hehe...can you tell that I don't feel shy about that fact? I will be 29 years old and I don't take advantage of my birthdays...what I mean is...that knowing I have FA I am thankful and excited each time I turn a year older...it is such a milestone when you know that doctors often tell you that you will not live past 20 or 21 years of age. It is a blessing that I am 29...I have made it thus far, and I feel excited about that.
More good news...the Urinary tract infection is gone. My test was all clear! Totally.... 0, 0, 0 for everything that they tested! What a relief. I hope it doesn't come back anytime soon! My bad cold is also pretty much gone. I had to have antibiotics to help...but I feel heaps better...a little bit of a cough left...randomly my nose has stopped running and I don't have to blow it all the time and I am able to socialise again. I hate being isolated and at home.
I had a good Mother's Day on Sunday. I still have not got all my energy back from all those infections..I feel tired easily...so on Sunday I was a bit late to church. However, I got there. Isaac and Alan gave me breakfast in bed...a hot breakfast and Isaac gave me the most sweetest present/card for mother's day. He made it himself! It had pictures of him everywhere holding a sign saying, "Isaac loves mummy"....it was a pop up card...I have trouble explaining it..it is really something you need to see in a picture! I had a good day.
Today was also a good day....Isaac and I went and visited with a kindy friend and his mum. What a nice afternoon we had! It was the first time that this mum and I had officially gotten together without our husbands and I felt like we related really well. I had an excellent time. And then Isaac and I came home for his sleep time.
So tomorrow is my birthday and I cannot wait. A week from Friday I am having a "How to Host a Murder" Party....anyone heard of that...it is like a board game thingy...well you send out invitations to 6 people and they have to be a character that you choose out of the box...you come and act out the character to the setting that is provided and a murder happens and then you have to work out who did it out of the group of people....boy, what explanation was a bit vague...anyway, this is my birthday thing....I am looking forward to it.
Got to go...I am hungry and dinner is almost served!
Love ya,
Charisse
--------------------------------------------------------------------------------
Saturday, May 5, 2007 1:17 AM CDT
Ah yes,
isn't it nice when winter approaches and you start getting all the bugs?
I had someone sneeze directly on me a week and a half ago and it was direct contact, close up on my face...I went to the bathroom and tried to wash off thinking, "oh no....I may catch this"...and I did...I know Isaac has been sick for 3 weeks but I rarely catch from him...we must be immune to each other. So I have a bad cold...I mean I feel pretty awful.
I have done a shift at the hospital this month! I don't need to worry about that for a while. My contract is once every 4 weeks I need to do a shift...if I get sick they understand though. I try and stay away from the medical wards and only be on surgical...however, my last shift was in medical but I was not with patients that were dangerous to me....still I feel like I don't want to breathe when on medical.
I also still have the UTI...which is a pain. As you know I have asked the FA group what they can do about this and everyone has suggested cut back on sugar (I did know that)...take cranberry tablets..never knew about that before now...mum actually mentioned it and so did one of my doctors yesterday so I wanted to ask about it and the FA group know about it...so I am gonna start that to help with the UTI....and take acidophilus......to help balance that bad and good bacteria. Only problem is that I need to wait for the next pay to get all this stuff! What a pain! I am drinking heaps of water....just keep filling up my cup! May be we can finally get on top of this and get rid of the infection and let the neuts go up again finally! Things have been going around in circles because my immune system has been suppressed by this infection! What a pain!
I also had my IVIG late by one week and my IgG levels drop low...hence the reason why I catch things so easily. I seem to last even with low neuts if I have my IVIG on time. So had it yesterday and I won't be missing any more of that...strictly 4 weekly while winter is here.
Next week I go to work to get my free flu shot and I am set for winter!
May be I should start Isaac on Vit C to help with him being exposed to more bugs at kindy this year...he was not at kindy last year and so far seems to have a permanent runny nose!
Mother's Day next week...wonder what Isaac will make me or get me? Something small I should think...needing to save money a bit....then my birthday on the 17th! I am thinking of having a "how to host a murder" party...any of you heard of that....should be fun. We get to dress up as the character we are given.
Well, got to go.....I am gonna sit down and read some magazines and relax....Isaac is asleep and Alan is having a nap and I have just finished my devotions and thought I would read these mags my friend gave me.
Today is a catch up day....I have been so busy and may be that is why I have also caught all these things...need to take a step back.
Love you all,
Charisse
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