Hi All,
well my cold ended up becoming a chest infection with many hot sweats, fainting spells and everything else. I started on antibiotics last night after seeing my GP....and then went to the center for my IVIG infusion today and the specialist wanted to give me some IV antibiotics...so I had that as well. They changed my infusion from Intagam P to Oxagam...different product...so let's pray that this change reduces those reactions I have been having. I feel good tonight so far....but we have a week to see if I still have a reaction this time.
Isaac is feeling better. He still has a bit of a barking cough but that will dissapate throughout the next 5 days I am told...unless he starts up with fevers and so on...he should be ok. He started back at kindy yesterday. The last day of the kindy week but he enjoyed it and is back to normal energy levels again.
Wednesday was my sickest day. I was supposed to attend a funeral of a friend with Alan and I ended up not being able to dry or dress myself after the shower/bath and was nauseated and all after my night on Tuesday of coughing constantly until about 1.30am in the morning. So a friend who was babsitting Isaac for me on Wed while Alan and I went to the funeral also had me at her house in one of their beds. I told Alan to go to the funeral because it was important. My friend looked after Isaac while I was sick and I slept in the bed for the majority of the time I was there. It was so nice that she helped us out...such a strange thing to ask a friend to watch both the mother and the child....hehe....Isaac loves playing with her child as well! They are really good friends at kindy and live very close to us.
Today at infusion they got the IV in first time...YAY!!!! I always feel very anxious about that and the infusion ran smoothly with hardly any beeps. I felt a bit flushed at times but otherwise it was ok.
Now I am at home just waiting for Alan and Isaac to get home. There are no kindy sessions on Friday so while I am at the hospital and Alan is at work...Isaac goes to mum's house and spends the day with them. Alan's mum and I have "our day" at the hospital...we have scones and stuff...it has become a tradition.
Well I am gonna sign off. Thanks to all of those who have been praying for me and supporting me and I will update again soon.
Love Charisse
Friday, July 27, 2007
Saturday, July 21, 2007
Soldering On!
Well, Isaac is still unwell. He still has croup. He is doing better at night time but he still has the real, horrible, barking cough and a blocked nose and generally is feeling very yucky. He told me that he has a sore chest today. I am amazed at the words he uses to explain things. I think he knows about medical stuff because his mummy has so much to do with the medical world...being a patient and a nurse! So every night he has had the vaporiser on to help with his cough and breathing. I also took him back to the doctor on Friday and the doctor has given him another 3 day course of prednisolone to help with the inflammation of the airways (which is what croup is). I am amazed at how little time it takes to affect the appitite. I remember being on huge doses of prednisolone when I was first diagnosed with FA...and oxymethalone...but I used to eat like a horse. Isaac is doing that but at least it is only 3 day courses...not like what our FA kids and adults go through if they are on it...and the transplant kids and adults. So he has only another day of prednisolone and hopefully he will show good improvement. It has been preschool holidays here and preschool starts on Monday but unless he has REALLT improved he may be home for the first week of kindy. Isaac and Alan are staying home from church tomorrow. It is just too cold for him at church or any morning right now. It has been a cold winter! Since I have infusion on Friday this next week I won't be able to get to church the following Sunday and I didn't want to miss 2 weeks in a row. I start to feel isolated then. So I will go to church on my own.
I have caught a minor cold. I am not surprised since Isaac has been coughing all over me. He is learning very well to cover his mouth but at night when he has the coughing fits he doesn't think about that and I get it all directly on me! I suppose it builds my immunity...hehe....I am surprised I don't get really unwell with bugs! Then again, I work in a hospital from time to time and have regular contact with different bugs...my immunity would be used to certain things even though it is lower than other people.
I have a sore toe! Can you believe it?! I have been sitting in a chair in the shower while I have been having the headaches so I don't have to stand and feel weird and I went to sit on the chair and slipped!!! Ahhhh....stubbed my left foot good and proper. The nail is bruised and I had to cut the broken stuff off...and one of my smaller toes bled. It was SO sore. I was saying, "ouch, ouch"...and I forgot to lock the bathroom so both Alan and Isaac come running in to see what happened.....hehe...Alan says, "what would you like me to do"...in a concerned voice...I said, while cringing, "nothing......it is just so sore"...or something to that effect...hehe....I seem to just be so clumsy sometimes.
Mum and dad got given a holiday!!!! At a resort in Victoria. I don't know the name of it but they invited Alan, Isaac and I to come with them. I am so excited. I hope we are all feeling well then...it is the 31st August...for a week. There is a heated pool and spa there. You can play mini golf...I love playing that even though I don't get to too often. You can go conoeing...did I update about this...can't remember. There is a children's games room and play room/playground. There is heaps of stuff. And....the resort is only 2 hours drive from the snow! Alan has never seen snow. I have seen snow in Chigaco in America at Christmas time and there is snow in Victoria in Australia but not near us...so we would love to go to the snow and go up a lift and do that on a day that I am feeling good!
Mum and dad have been sick too...and Liesl and Tim (sister and brother-in-law)...as well as Eliana, my niece. So many people sick here this winter...we are all being knocked around with it.
Matilda, our cat, has a sore eye...don't know why I am telling you that but she is part of the family and is joining in with everyone having some issues.
We had a great time with our friend/nanny last week. She came over to have a movie night with us on Wednesday...had dinner with us and slept over...then she works Thursday here as Isaac's nanny. Isaac thought it was great that she was sleeping over.
Oh, yes, to update on Isaac's tooth. He did so well at the dentist on Thursday afternoon. He had a ride in the dentist chair and sat so nicely for the dentist. Dr John said that the tooth looks like it is dying and that the blood vessels around had burst but with a baby tooth the nerve can often be protected down the bottom of the tooth (not the gum part) and so it can sometimes recover and go white. He said there is no way to tell if it will completely die or recover and that it would be a 6 to 12 month wait to see what it does. Alan and I chatted and felt like we were to wait and see and not get Isaac to have anything done...we will wait. I have to keep telling myself that it will be alright either way...and if it gets worse and there is a problem..we will deal with it then but right now I need to be patient and wait..and hang in there for Isaac...it is great to have hope that it may recover...but I still cannot completely count on that.
As a Christian I know that we have to trust God with the smaller things as well as big things...so not just the FA I have....but about Isaac's tooth which is a smaller issue than FA...but as a mum...it feels heaps hard...but I am trying and asking God to help me.
Ok, well I am going to sit down with Alan now. Thank you to everyone who leaves messages...I really appreciate it. I read them and smile and feel loved and it takes any lonliness away. So it is much appreciated.
I will update again soon.
Love Charisse
I have caught a minor cold. I am not surprised since Isaac has been coughing all over me. He is learning very well to cover his mouth but at night when he has the coughing fits he doesn't think about that and I get it all directly on me! I suppose it builds my immunity...hehe....I am surprised I don't get really unwell with bugs! Then again, I work in a hospital from time to time and have regular contact with different bugs...my immunity would be used to certain things even though it is lower than other people.
I have a sore toe! Can you believe it?! I have been sitting in a chair in the shower while I have been having the headaches so I don't have to stand and feel weird and I went to sit on the chair and slipped!!! Ahhhh....stubbed my left foot good and proper. The nail is bruised and I had to cut the broken stuff off...and one of my smaller toes bled. It was SO sore. I was saying, "ouch, ouch"...and I forgot to lock the bathroom so both Alan and Isaac come running in to see what happened.....hehe...Alan says, "what would you like me to do"...in a concerned voice...I said, while cringing, "nothing......it is just so sore"...or something to that effect...hehe....I seem to just be so clumsy sometimes.
Mum and dad got given a holiday!!!! At a resort in Victoria. I don't know the name of it but they invited Alan, Isaac and I to come with them. I am so excited. I hope we are all feeling well then...it is the 31st August...for a week. There is a heated pool and spa there. You can play mini golf...I love playing that even though I don't get to too often. You can go conoeing...did I update about this...can't remember. There is a children's games room and play room/playground. There is heaps of stuff. And....the resort is only 2 hours drive from the snow! Alan has never seen snow. I have seen snow in Chigaco in America at Christmas time and there is snow in Victoria in Australia but not near us...so we would love to go to the snow and go up a lift and do that on a day that I am feeling good!
Mum and dad have been sick too...and Liesl and Tim (sister and brother-in-law)...as well as Eliana, my niece. So many people sick here this winter...we are all being knocked around with it.
Matilda, our cat, has a sore eye...don't know why I am telling you that but she is part of the family and is joining in with everyone having some issues.
We had a great time with our friend/nanny last week. She came over to have a movie night with us on Wednesday...had dinner with us and slept over...then she works Thursday here as Isaac's nanny. Isaac thought it was great that she was sleeping over.
Oh, yes, to update on Isaac's tooth. He did so well at the dentist on Thursday afternoon. He had a ride in the dentist chair and sat so nicely for the dentist. Dr John said that the tooth looks like it is dying and that the blood vessels around had burst but with a baby tooth the nerve can often be protected down the bottom of the tooth (not the gum part) and so it can sometimes recover and go white. He said there is no way to tell if it will completely die or recover and that it would be a 6 to 12 month wait to see what it does. Alan and I chatted and felt like we were to wait and see and not get Isaac to have anything done...we will wait. I have to keep telling myself that it will be alright either way...and if it gets worse and there is a problem..we will deal with it then but right now I need to be patient and wait..and hang in there for Isaac...it is great to have hope that it may recover...but I still cannot completely count on that.
As a Christian I know that we have to trust God with the smaller things as well as big things...so not just the FA I have....but about Isaac's tooth which is a smaller issue than FA...but as a mum...it feels heaps hard...but I am trying and asking God to help me.
Ok, well I am going to sit down with Alan now. Thank you to everyone who leaves messages...I really appreciate it. I read them and smile and feel loved and it takes any lonliness away. So it is much appreciated.
I will update again soon.
Love Charisse
Tuesday, July 17, 2007
Discouraged
Hello Guys,
well I still have the headaches....not nearly as bad as needing to go in hospital, but they are still there. I am feeling a little worried. The headaches could be increased by stress as well as the IVIG's. I have not had my eyes tested for a while..but don't seem to have trouble with my eyes..but I suppose you could just get headaches. We still have not had the MRI but will push for that to be soon. I was trying to just relax a bit since the drama. My IVIG is in a week and a half and I feel stressed about having another one because of the extreme reactions. OH dear.....waiting for the doctor to ring back about details to do with the IVIG and a new product. I also have some ulcers in my mouth which usually add to a headache...they are on the side of my tongue where it really hurts and my ear seems to hurt from it. So I have something to numb it which does help. I have not had them for ages, literally and think it must be the stress from the headaches and stuff. I am really tense in my muscles and think that may be regular, gentle massages would help. So Alan and I talked about finding out about all that. It may help me be more relaxed and sleep better and have less headaches....we both know the MRI is still a priority...just trying to help other areas as well to get rid of headaches.
Then a week a go I noticed that Isaac's front tooth was discoloured and was really discouraged. I know that a couple of weeks a go at church he had a head on collision with another child and had blood in his mouth. However, Alan and I couldn't see anything wrong with his front teeth.....must have bumped it then...surely. It is quite discoloured now and I am sure the nerve has died. I rang the dentist and have him in for an appointment tomorrow at 4.45pm. They will do an x-ray and will be able to see the nerve and what it is doing. He has a beautiful smile and when he smiles he shows his gums and his teeth and I am so sad about his tooth. Hopefully we can do something about it so it doesn't look awful. They may be able to whiten it and then he will not feel weird about it. He has been good....it doesn't hurt or feel strange...he tells me...we have been practising how we will do at the dentist. This will be his first proper visit and i am a little anxious. People have told me that his tooth is not too noticeable but it can be seen. I know some people will read this and think, "it will be ok"...and I know it is a baby tooth and will fall out and be replaced one day but as a mum, anything that happens to teeth...baby teeth or not...it can be very upsetting. I went to see a friend on Monday and her child and Isaac play together and she said when her child chipped his tooth she was crying like I have been and she understands the "mummy blues". That helped. She and I are very similar with our feelings and I appreciate her supporting me. So I am trying to not get too upset and see what the dentist says as well...Isaac has a good mouth of teeth...very healthy...so that is good.
On Monday night Isaac woke at 11pm with croup. That is always scary and we sat in the bathroom with the steam which didn't seem to work as well as it usually does. Isaac's G.P gave us some baby prednisolone last winter to use for croup when the steam doesn't work....so we don't have to go out in the freezing cold to the hospital...Isaac communicates now and tells me how he feels and he was a bit panicked. He asked us to call our doctor friends...which was good because we know they are up late (not calling just because Isaac asked) and I didn't know the new dose of prednisolone for Isaac's new wait...so we rang and they said we were doing everything right....told us the new dose and we gave Isaac the medicine. If he still had trouble with breathing an hour or two later we would go to the hospital...I would call the ambulance so he didn't have to be in the wintery, freezing cold. I think that is better for croup. But we didn't have to. The medicine worked as well as the humidifier and Alan slept in the room with him to make sure he was ok...we got to sleep late but it all worked out. Isaac is a lot better today.
So, we have a visitor coming tonight and I am going to go relax. Please pray we get the headaches sorted out. Although, my week doesn't sound like it has been too relaxing and that probably doesn't help.
I hope you are all doing ok!
Love Charisse
well I still have the headaches....not nearly as bad as needing to go in hospital, but they are still there. I am feeling a little worried. The headaches could be increased by stress as well as the IVIG's. I have not had my eyes tested for a while..but don't seem to have trouble with my eyes..but I suppose you could just get headaches. We still have not had the MRI but will push for that to be soon. I was trying to just relax a bit since the drama. My IVIG is in a week and a half and I feel stressed about having another one because of the extreme reactions. OH dear.....waiting for the doctor to ring back about details to do with the IVIG and a new product. I also have some ulcers in my mouth which usually add to a headache...they are on the side of my tongue where it really hurts and my ear seems to hurt from it. So I have something to numb it which does help. I have not had them for ages, literally and think it must be the stress from the headaches and stuff. I am really tense in my muscles and think that may be regular, gentle massages would help. So Alan and I talked about finding out about all that. It may help me be more relaxed and sleep better and have less headaches....we both know the MRI is still a priority...just trying to help other areas as well to get rid of headaches.
Then a week a go I noticed that Isaac's front tooth was discoloured and was really discouraged. I know that a couple of weeks a go at church he had a head on collision with another child and had blood in his mouth. However, Alan and I couldn't see anything wrong with his front teeth.....must have bumped it then...surely. It is quite discoloured now and I am sure the nerve has died. I rang the dentist and have him in for an appointment tomorrow at 4.45pm. They will do an x-ray and will be able to see the nerve and what it is doing. He has a beautiful smile and when he smiles he shows his gums and his teeth and I am so sad about his tooth. Hopefully we can do something about it so it doesn't look awful. They may be able to whiten it and then he will not feel weird about it. He has been good....it doesn't hurt or feel strange...he tells me...we have been practising how we will do at the dentist. This will be his first proper visit and i am a little anxious. People have told me that his tooth is not too noticeable but it can be seen. I know some people will read this and think, "it will be ok"...and I know it is a baby tooth and will fall out and be replaced one day but as a mum, anything that happens to teeth...baby teeth or not...it can be very upsetting. I went to see a friend on Monday and her child and Isaac play together and she said when her child chipped his tooth she was crying like I have been and she understands the "mummy blues". That helped. She and I are very similar with our feelings and I appreciate her supporting me. So I am trying to not get too upset and see what the dentist says as well...Isaac has a good mouth of teeth...very healthy...so that is good.
On Monday night Isaac woke at 11pm with croup. That is always scary and we sat in the bathroom with the steam which didn't seem to work as well as it usually does. Isaac's G.P gave us some baby prednisolone last winter to use for croup when the steam doesn't work....so we don't have to go out in the freezing cold to the hospital...Isaac communicates now and tells me how he feels and he was a bit panicked. He asked us to call our doctor friends...which was good because we know they are up late (not calling just because Isaac asked) and I didn't know the new dose of prednisolone for Isaac's new wait...so we rang and they said we were doing everything right....told us the new dose and we gave Isaac the medicine. If he still had trouble with breathing an hour or two later we would go to the hospital...I would call the ambulance so he didn't have to be in the wintery, freezing cold. I think that is better for croup. But we didn't have to. The medicine worked as well as the humidifier and Alan slept in the room with him to make sure he was ok...we got to sleep late but it all worked out. Isaac is a lot better today.
So, we have a visitor coming tonight and I am going to go relax. Please pray we get the headaches sorted out. Although, my week doesn't sound like it has been too relaxing and that probably doesn't help.
I hope you are all doing ok!
Love Charisse
Thursday, July 12, 2007
Funny Stories Amongst Feeling Unwell
Ah ok....I can see the computer screen much better now. The headaches are getting less and less and the pain regime is working....praise the Lord. I needed that rest in hospital and I needed that IV fluid and I needed those strong pain relievers to break the headache.....man that was horrible. I am still going for the MRI to check the brain....and will see my specialist again sometime and I hope the IVIG product has been ordered as the other one for my next infusion...I am feeling nervous about the next one...I don't want to feel that pain again and be so debilitated from it...it really frightened me and made me feel unhappy......so there were some funny things that happened in the middle of it all and I feel up to sharing...hehe....haha...already I am giggling.
So the Sunday I woke at 5am with the headache raging....and then started to vomit after waking Alan.....we rang the locum doctor to come to our house and he knew about IVIGs...usually I am very protective of myself with doctors...you all know I have a problem and it can be a problem ringing in a strange doctor for me....it is a problem me going to the emergency room...I go crazy and get very upset....but this guy...he walks in...now the afternoon and I am still very nauseated, having had any fluids and been tossing and turning...he came in and I always look at them to check them out...what is my first response to this person? How much will I let them do? Are they going to respect me? All this goes on in my mind within seconds of them arriving...but this young kind of doctor says, "hey, she's already looking at me weird"...with a sense of humour and I laughed...I couldn't believe I laughed...and from then the house seemed crazy...Isaac coming in and demanding things...the doctor laughing at Alan running around after Isaac and myself....he was actually laughing and making funny comments...hehe...then the injection in my bottom....ahhhhh....they find the muscle near your hips where the Bone marrow biopsies and stuff are done...now I have had about 24 of those done...I am SO sensitive...I saying, "Oww, Ouch...ahhhhh...."...and then laughing...he says, "I have not even done the injection yet! (laughing and carrying on)....so I say..."hey, Isaac if you want to see the needle , go and watch!"....the doctor thought that was strange and made a comment....and then as he put the needle in I flinched and started going "Ouch, Ouch...ahhh....it hurts"....Isaac says to me, "Calm Down, Calm Down...it will be alright"...and then we all laugh...it was like a crazy place...and then the doctor says, "you are the most funniest person I have ever seen in pain!"...with a giggle...it was funny....too bad that hours later the pain med didn't work and I ended up going to hospital.
While at hospital...I am rocking myself on the bed...I am in so much pain...and they come in with a subcut butterfly...you have to understand I am freaked out by having any kind of port in me....and so I say, "I have never had one of those before"...and stare at them.....they go to explain...I said, "Yes, I am a nurse...I have put those in people before,...but never had one myself"....Alan and the nurses just looked at me...the nurses looked like they didn't know what to do...you see I am protective of myself and anxious and in lots of pain and aggitated...Alan gave me a reassuring look and so I consented and the pain relief was such a relief...hehe.
Then...now I know that many of us are very familiar with Medical Emergency Teams...some have even needed to watch their loved ones have these teams...so please know that I respect that...my brother had these teams working on him when he passes away and it was traumatic....but I amused myself in hospital once in reference to this...this is not meant to make people get upset. At work (I am an RN) we carry what we call the criteria for the MET (Medical Emergency Team) to be called whenever someone meets the criteria...we are trained to respond and I am used to hearing the announcment....so while I am lying on the bed at the hospital and fast asleep....all drugged up...there was an announcement over the hospital that the "MET" team was needed in the appropriate location....I sat upright in bed....and for some reason thought I was at work and I better respond....I was so confused...the confusion for me I found amusing....afterwards I actually had to sit there and work out I am a patient and it is not my responsibility to respond...it is ok....that was weird.
Then another time...I am busting for the bathroom...and they are just pumping all these fluids into me...I am busting and Alan was not there to help me unhook everything....I am so used to...as the nurse...unplugging the cord, winding it up, and walking the patient to the toilet....so i go to unplug the cord and wind it up and move it all around...and I get the electric bed cord, the TV cords and the IV lines all tied up together and then I am standing there like I am gonna bust trying to undo it all! I was so embarrassed and drugged and unsteady..very amusing...I had to call the nurse and she came in and just laughed at me...in a nice way....and she helped me get it all undone and to the bathroom before I burst....so that was funny.
Hehe...I saw my GP yesterday for some follow up...so I am telling him all about this and we are laughing in his room.....he is shaking his head and sayiang, "I don't know you! I don't know you!"....it was funny...I was telling him the stories...he thinks I would be a difficult patient (and he is right)...but he just laughs at how I do things and how the medical staff are drilled by me...he thinks it is great that I have such control of my health care and that I have come a long way with trusting people....it used to be even harder than me...I wouldn't allow treatment at all!
So there are some funny stories...hehe...I enjoyed writing them......
Oh another one....this is funny...I already shared with some people...like Teresa and Kristin....I even wrote it in Teresa's guestbook....but she was talking about getting new contacts...for her eyes...and it reminded me how I struggle with wearing glasses...any kind...sunglasse....so this is what happens when I wear glasses...an example of the sunglasses...I am driving in the car, wearing sunglasses...I get a bad twitch on my right eye when wearing anything on my eyes....bad...you can see it and it feels strange....so I am driving, Isaac in the back seat...in his car seat..I turn the music up a little so Isaac and I can enjoy...we stop at the traffic lights..I feel a little tired and so I lean on the door while at the lights...meanwhile a guy has stopped at the lights next to your car...innocently you look up at them because they are just people.....my eye starts twitching badly and all of a sudden this guy thinks you are winking furiously at him...very embarrassing...the lights go green and off you go...feeling relieved...I laugh every time I think of it....
Ha...when I was getting ready for my wedding in 1998 they were putting eye make up on me and I was wiggling off the chair...my eyes were twitching and I couldn't stay still on the chair as they tried to apply it...everyone was laughing...when I did sit still....my eyes went crazy! It does not look normal!!!! Giggle, GIGGLE, GIGGLE! Anyway, it took a while to do my eyes!
Well, I better go...don't want to strain my head...or eyes to make my head and I should calm down for sleeping! Ha.....keep you updated with the headache stuff.....and hope you enjoyed my stories!
Love Charisse
So the Sunday I woke at 5am with the headache raging....and then started to vomit after waking Alan.....we rang the locum doctor to come to our house and he knew about IVIGs...usually I am very protective of myself with doctors...you all know I have a problem and it can be a problem ringing in a strange doctor for me....it is a problem me going to the emergency room...I go crazy and get very upset....but this guy...he walks in...now the afternoon and I am still very nauseated, having had any fluids and been tossing and turning...he came in and I always look at them to check them out...what is my first response to this person? How much will I let them do? Are they going to respect me? All this goes on in my mind within seconds of them arriving...but this young kind of doctor says, "hey, she's already looking at me weird"...with a sense of humour and I laughed...I couldn't believe I laughed...and from then the house seemed crazy...Isaac coming in and demanding things...the doctor laughing at Alan running around after Isaac and myself....he was actually laughing and making funny comments...hehe...then the injection in my bottom....ahhhhh....they find the muscle near your hips where the Bone marrow biopsies and stuff are done...now I have had about 24 of those done...I am SO sensitive...I saying, "Oww, Ouch...ahhhhh...."...and then laughing...he says, "I have not even done the injection yet! (laughing and carrying on)....so I say..."hey, Isaac if you want to see the needle , go and watch!"....the doctor thought that was strange and made a comment....and then as he put the needle in I flinched and started going "Ouch, Ouch...ahhh....it hurts"....Isaac says to me, "Calm Down, Calm Down...it will be alright"...and then we all laugh...it was like a crazy place...and then the doctor says, "you are the most funniest person I have ever seen in pain!"...with a giggle...it was funny....too bad that hours later the pain med didn't work and I ended up going to hospital.
While at hospital...I am rocking myself on the bed...I am in so much pain...and they come in with a subcut butterfly...you have to understand I am freaked out by having any kind of port in me....and so I say, "I have never had one of those before"...and stare at them.....they go to explain...I said, "Yes, I am a nurse...I have put those in people before,...but never had one myself"....Alan and the nurses just looked at me...the nurses looked like they didn't know what to do...you see I am protective of myself and anxious and in lots of pain and aggitated...Alan gave me a reassuring look and so I consented and the pain relief was such a relief...hehe.
Then...now I know that many of us are very familiar with Medical Emergency Teams...some have even needed to watch their loved ones have these teams...so please know that I respect that...my brother had these teams working on him when he passes away and it was traumatic....but I amused myself in hospital once in reference to this...this is not meant to make people get upset. At work (I am an RN) we carry what we call the criteria for the MET (Medical Emergency Team) to be called whenever someone meets the criteria...we are trained to respond and I am used to hearing the announcment....so while I am lying on the bed at the hospital and fast asleep....all drugged up...there was an announcement over the hospital that the "MET" team was needed in the appropriate location....I sat upright in bed....and for some reason thought I was at work and I better respond....I was so confused...the confusion for me I found amusing....afterwards I actually had to sit there and work out I am a patient and it is not my responsibility to respond...it is ok....that was weird.
Then another time...I am busting for the bathroom...and they are just pumping all these fluids into me...I am busting and Alan was not there to help me unhook everything....I am so used to...as the nurse...unplugging the cord, winding it up, and walking the patient to the toilet....so i go to unplug the cord and wind it up and move it all around...and I get the electric bed cord, the TV cords and the IV lines all tied up together and then I am standing there like I am gonna bust trying to undo it all! I was so embarrassed and drugged and unsteady..very amusing...I had to call the nurse and she came in and just laughed at me...in a nice way....and she helped me get it all undone and to the bathroom before I burst....so that was funny.
Hehe...I saw my GP yesterday for some follow up...so I am telling him all about this and we are laughing in his room.....he is shaking his head and sayiang, "I don't know you! I don't know you!"....it was funny...I was telling him the stories...he thinks I would be a difficult patient (and he is right)...but he just laughs at how I do things and how the medical staff are drilled by me...he thinks it is great that I have such control of my health care and that I have come a long way with trusting people....it used to be even harder than me...I wouldn't allow treatment at all!
So there are some funny stories...hehe...I enjoyed writing them......
Oh another one....this is funny...I already shared with some people...like Teresa and Kristin....I even wrote it in Teresa's guestbook....but she was talking about getting new contacts...for her eyes...and it reminded me how I struggle with wearing glasses...any kind...sunglasse....so this is what happens when I wear glasses...an example of the sunglasses...I am driving in the car, wearing sunglasses...I get a bad twitch on my right eye when wearing anything on my eyes....bad...you can see it and it feels strange....so I am driving, Isaac in the back seat...in his car seat..I turn the music up a little so Isaac and I can enjoy...we stop at the traffic lights..I feel a little tired and so I lean on the door while at the lights...meanwhile a guy has stopped at the lights next to your car...innocently you look up at them because they are just people.....my eye starts twitching badly and all of a sudden this guy thinks you are winking furiously at him...very embarrassing...the lights go green and off you go...feeling relieved...I laugh every time I think of it....
Ha...when I was getting ready for my wedding in 1998 they were putting eye make up on me and I was wiggling off the chair...my eyes were twitching and I couldn't stay still on the chair as they tried to apply it...everyone was laughing...when I did sit still....my eyes went crazy! It does not look normal!!!! Giggle, GIGGLE, GIGGLE! Anyway, it took a while to do my eyes!
Well, I better go...don't want to strain my head...or eyes to make my head and I should calm down for sleeping! Ha.....keep you updated with the headache stuff.....and hope you enjoyed my stories!
Love Charisse
Tuesday, July 10, 2007
Back Home
Hi All,
I am home. Came home this evening. Headaches are almost gone...much more manageable now. I will try and write more a bit later....the pain regime I am on is making me a little dizzy and I feel strange....so I am gonna lie down...could have stayed another night but I felt like I needed to be home.
MRI still being booked...and yes, they are thinking this is a big reaction to the IVIG I have 4 weekly...trying to work out how we can resolve this. Will write more when I can...and then share those funnies...just can't concentrate on this computer screen. Thanks for ALL your messages...from everyone..they are much appreciated and encouraging....until a little later when I feel a bit better.
Love Charisse
I am home. Came home this evening. Headaches are almost gone...much more manageable now. I will try and write more a bit later....the pain regime I am on is making me a little dizzy and I feel strange....so I am gonna lie down...could have stayed another night but I felt like I needed to be home.
MRI still being booked...and yes, they are thinking this is a big reaction to the IVIG I have 4 weekly...trying to work out how we can resolve this. Will write more when I can...and then share those funnies...just can't concentrate on this computer screen. Thanks for ALL your messages...from everyone..they are much appreciated and encouraging....until a little later when I feel a bit better.
Love Charisse
Monday, July 9, 2007
Hi from hospital
Greetings,
I have an IV in my right hand, hense I am unable to type.... so i am sitting in my bed like a queen dictating to my husband what he should write in my journal. (giggle giggle)
Last night was a horrible night. As soon as we arrived at the hospital, i just wanted pain relief. the pain was so overwhelming, all i could do was rock... and demand!!
I didn't have an IV in then, so the nurses brought a sub-cut butterfly (small temporary line (needle and line) and put it into my tummy and gave me some fentanyl, which DIDN'T releive my pain. I spent most of the evening in severe pain with Isaac marching around the hospital, talking at the top of his voice (or so it felt).
I tend to feel embarassed to tell the nurses how badly i'm in pain. Alan helped me to tell them and eventually they rang the doctor and up'd my dose of fentanyl and gave me other digesic. It was the fentanyl that helped me to control the pain. They also put an IV in, and I've had 2 litres of IV fluid.
I'm feeling more hydrated now, and have 1 litre of IV fluids to go. I'm able to eat and drink more and obviously feel a little bit better today.
The doctor has put me on a pain protocol, that we are trialling overnight and tomorrow. If this works, I get to go home tomorrow night.
The doctor is also booking me in for a MRI scan in the next couple of weeks to rule out any nasties. My last MRI in February was totally clear, so we have a baseline now.
they took bloods yesterday, and the results show all clear of infection. In fact I was surprised and pleased to see that my platelets have doubled since my last count (i prefer not to share the actual blood counts online - private)
That is all for tonight. I have more funnies to share but will share them when i can type, and am feeling better at home.
Love you all
Charisse
(and Alan the typist!!)
I have an IV in my right hand, hense I am unable to type.... so i am sitting in my bed like a queen dictating to my husband what he should write in my journal. (giggle giggle)
Last night was a horrible night. As soon as we arrived at the hospital, i just wanted pain relief. the pain was so overwhelming, all i could do was rock... and demand!!
I didn't have an IV in then, so the nurses brought a sub-cut butterfly (small temporary line (needle and line) and put it into my tummy and gave me some fentanyl, which DIDN'T releive my pain. I spent most of the evening in severe pain with Isaac marching around the hospital, talking at the top of his voice (or so it felt).
I tend to feel embarassed to tell the nurses how badly i'm in pain. Alan helped me to tell them and eventually they rang the doctor and up'd my dose of fentanyl and gave me other digesic. It was the fentanyl that helped me to control the pain. They also put an IV in, and I've had 2 litres of IV fluid.
I'm feeling more hydrated now, and have 1 litre of IV fluids to go. I'm able to eat and drink more and obviously feel a little bit better today.
The doctor has put me on a pain protocol, that we are trialling overnight and tomorrow. If this works, I get to go home tomorrow night.
The doctor is also booking me in for a MRI scan in the next couple of weeks to rule out any nasties. My last MRI in February was totally clear, so we have a baseline now.
they took bloods yesterday, and the results show all clear of infection. In fact I was surprised and pleased to see that my platelets have doubled since my last count (i prefer not to share the actual blood counts online - private)
That is all for tonight. I have more funnies to share but will share them when i can type, and am feeling better at home.
Love you all
Charisse
(and Alan the typist!!)
Saturday, July 7, 2007
Going to Hospital
Just writing a note to let you know that I am being admitted tonight for treatment of these severe headaches that I have been having with the IVIG..woke at 5am with it so sore, started vomiting...and the locum doctor came out and gave me injections for nausea and pain..but doesn't seem to have worked...I am not sleepy from it either...boy my body is sure trying to hold out. It is amazing I am here at the computer with how sore the eye site is and how the light affects me...so I am going to go and try and relax again....before Alan and I leave for the hosptial...my bed is booked...I think I may also be a bit dehydrated...so IV meds and IV to rehydrate and a rest without my little boy....we might be doing an MRI as well sometime because it has been so nasty...got to double check with FA that there is no "nasties" going on in the brain. I have a funny or two to share...but I don't have the energy or the capacity to sit here and write it...so until I get home.
Love Charisse
Love Charisse
Wednesday, July 4, 2007
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
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
Sunday, July 1, 2007
Health Update
Evening......
I am very tired tonight. I had my IVIG infusion on Friday and remembered to take my pre-med on Thursday. I take 5mg of Prednisolone 3 times during the day on Thursday...it helps taking it the day before to try and stop all the pain and inflammation I get from IVIG. I have had horrible reactions lately and my haematologist was suggesting we change to a different IVIG product to see if we can reduce them.
The doctor who "admits" me to the day center for the infusion is an oncologist...head and neck cancer actually....pretty good to have someone on board with this issue and FA...since it is a big issue with FA. Although I don't have head and neck cancer..he just helps with me being in a private center to treat the IVIG problems. He is a good doctor and has been reading up on every aspect of FA and is very supportive. He is monitoring this fungal infection on my scalp right now. I put cream on it 2 to 3 times a day. I have had it for ages...it is taking a long time to clear up but when they swabbed it is came back as fungal...anyway..off the point. He suggested we add another concoction to my pre-med on the day and try some dexamethasone IV as well as the hydrocortisone...to reduce the inflammation I get with the IVIG. It certainly was a weird drug to have IV. I have given it as a nurse but never had it and it made me feel very strange.
I am SO tired from the IVIG now. I have not had heaps of pain though which is good. I just need to shut my eyes all the time. I had some pain but seem to be having a better run this time.
Isaac came and visited me in the day center again. He is always quick to say he doesn't want a bandaide and I tell him it is only for mummy. He associates the visit with cake...hehe....but unfortunately it was not served when he came to vist. I brought him some home with me. He is brave seeing mummy hooked up to an IV and he sits on my lap. It is nice to have him visit me.
Well, I am tired. That is all for the update.
Love you all,
Charisse
I am very tired tonight. I had my IVIG infusion on Friday and remembered to take my pre-med on Thursday. I take 5mg of Prednisolone 3 times during the day on Thursday...it helps taking it the day before to try and stop all the pain and inflammation I get from IVIG. I have had horrible reactions lately and my haematologist was suggesting we change to a different IVIG product to see if we can reduce them.
The doctor who "admits" me to the day center for the infusion is an oncologist...head and neck cancer actually....pretty good to have someone on board with this issue and FA...since it is a big issue with FA. Although I don't have head and neck cancer..he just helps with me being in a private center to treat the IVIG problems. He is a good doctor and has been reading up on every aspect of FA and is very supportive. He is monitoring this fungal infection on my scalp right now. I put cream on it 2 to 3 times a day. I have had it for ages...it is taking a long time to clear up but when they swabbed it is came back as fungal...anyway..off the point. He suggested we add another concoction to my pre-med on the day and try some dexamethasone IV as well as the hydrocortisone...to reduce the inflammation I get with the IVIG. It certainly was a weird drug to have IV. I have given it as a nurse but never had it and it made me feel very strange.
I am SO tired from the IVIG now. I have not had heaps of pain though which is good. I just need to shut my eyes all the time. I had some pain but seem to be having a better run this time.
Isaac came and visited me in the day center again. He is always quick to say he doesn't want a bandaide and I tell him it is only for mummy. He associates the visit with cake...hehe....but unfortunately it was not served when he came to vist. I brought him some home with me. He is brave seeing mummy hooked up to an IV and he sits on my lap. It is nice to have him visit me.
Well, I am tired. That is all for the update.
Love you all,
Charisse
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