What a year 2011 has been. It started off with a chest infection which left me feeling very weak and breathless. I had to give up going to the toning tables (this was the only non strenuous exercise I could do) because I was so ill.
I also had several tests done, lung function, endoscopy, CT and MRI scans, barium follow through and monthly blood tests. I was given several medications (of which none worked) to help with the lupus, vasculitis and my lungs which are damaged by the lupus.
The start of this year found me vomiting (I hadn't even been on the bottle).
Went to bed after 1 am and awake since 7 am. I am in so much pain (this is all part of the lupus) so I am better off getting out of the bed as the pain goes when I am moving about.
I will be having some friends coming for a meal today (hopefully my adrenaline will kick in again), and all will go well.
The meal went well (there were thirteen of us). They have all left now and I have just brought my dinner up (so annoying).
The day is not over yet but I want to remain positive at all times.
Saturday, December 31, 2011
Maureen's blog: Meal with friends
Maureen's blog: Meal with friends: Not much happened today, after waking up at 4 am got out of bed after 5 stayed up until 7 went back to bed until about 11am. My body ached ...
Meal with friends
Not much happened today, after waking up at 4 am got out of bed after 5 stayed up until 7 went back to bed until about 11am.
My body ached so much whilst I was in bed, so even though I felt so very tired I had to get up as I had planned to have some elderly friends round later for a meal (one 95 years old).
My adrenaline kicked in which allowed me to prepare and cook a meal even though I felt so tired (I love entertaining and it is good to give than receive).
We had a great meal but as soon as I had finish eating I started to burp as my meal is once again stuck in my oesophagus so again I will have to wait awhile before I can go to bed tonight.
My body ached so much whilst I was in bed, so even though I felt so very tired I had to get up as I had planned to have some elderly friends round later for a meal (one 95 years old).
My adrenaline kicked in which allowed me to prepare and cook a meal even though I felt so tired (I love entertaining and it is good to give than receive).
We had a great meal but as soon as I had finish eating I started to burp as my meal is once again stuck in my oesophagus so again I will have to wait awhile before I can go to bed tonight.
Friday, December 30, 2011
Maureen's blog: Dry eyes
Maureen's blog: Dry eyes: Slept very well last night, so well I woke up with what felt like grit in my eyes (I have very dry eyes another symptom of the lupus). I hav...
Thursday, December 29, 2011
Dry eyes
Slept very well last night, so well I woke up with what felt like grit in my eyes (I have very dry eyes another symptom of the lupus). I have to instil artificial tears on a regular basis into my eyes and at nights I also have to use a greasy one, which I do automatically during the night.
Because I slept through to this morning I could hardly open my eyes, they were so dry. I am having to make sure I keep them very lubricated throughout the day.
Had breakfast and lunch it stayed down and I felt comfortable but dinner (small portion) is now stuck again so it is back to belching and whoops! It is now up.
Oh! I am feeling so very tired again, cannot go to bed yet as there is more to come up (I am sick of this), lol.
It is midnight I am still vomiting and now I am breathless and it us making me cough as usual.
Because I slept through to this morning I could hardly open my eyes, they were so dry. I am having to make sure I keep them very lubricated throughout the day.
Had breakfast and lunch it stayed down and I felt comfortable but dinner (small portion) is now stuck again so it is back to belching and whoops! It is now up.
Oh! I am feeling so very tired again, cannot go to bed yet as there is more to come up (I am sick of this), lol.
It is midnight I am still vomiting and now I am breathless and it us making me cough as usual.
Maureen's blog: Tinnitus
Maureen's blog: Tinnitus: Had a bad night again got up about 2 am stayed up until 6 am. Felt very hot in bed, slept for about two hours then I was awake. Read and pr...
Wednesday, December 28, 2011
Maureen's blog: Sales
Maureen's blog: Sales: Once I fell asleep I slept all night. Woke up early had fruit for breakfast and my medication (which has to be taken with food). I actually...
Tinnitus
Had a bad night again got up about 2 am stayed up until 6 am. Felt very hot in bed, slept for about two hours then I was awake.
Read and prayed before getting out of bed to have my breakfast (very small portion of cereal). I am still feeling full and cannot bend forward as my breakfast hasn't gone into my stomach.
Decided to go with Bob to return a gift I bought for him before Christmas. We got a disabled space to park outside the store which was very useful.
Got home had some lunch and started to watch television but I now cannot hear properly as I have very bad tinnitus (ringing in my ears).
Oh! I must tell you "my head is still feeling clear"
Feeling very tired again (this tiredness is also part of the lupus), I have been falling asleep whilst trying to watch TV.
Just had my dinner no taste to the food and now I am so uncomfortable as the food is in my oesophagus, I keep belching and I feel my dinner is going to come up any minute.
I am in bed watching TV it is just after 8 pm and I am waiting to go to the bathroom again as there is more of my dinner left to come up before I can go to sleep.
The ringing is still going on in my ears which is so distracting, oh well! Once I am asleep I won't be able to hear it any more.
Read and prayed before getting out of bed to have my breakfast (very small portion of cereal). I am still feeling full and cannot bend forward as my breakfast hasn't gone into my stomach.
Decided to go with Bob to return a gift I bought for him before Christmas. We got a disabled space to park outside the store which was very useful.
Got home had some lunch and started to watch television but I now cannot hear properly as I have very bad tinnitus (ringing in my ears).
Oh! I must tell you "my head is still feeling clear"
Feeling very tired again (this tiredness is also part of the lupus), I have been falling asleep whilst trying to watch TV.
Just had my dinner no taste to the food and now I am so uncomfortable as the food is in my oesophagus, I keep belching and I feel my dinner is going to come up any minute.
I am in bed watching TV it is just after 8 pm and I am waiting to go to the bathroom again as there is more of my dinner left to come up before I can go to sleep.
The ringing is still going on in my ears which is so distracting, oh well! Once I am asleep I won't be able to hear it any more.
Tuesday, December 27, 2011
Sales
Once I fell asleep I slept all night. Woke up early had fruit for breakfast and my medication (which has to be taken with food).
I actually went to the sales (one shop with Bob) and bought cards and wrapping papers.
Came home made some soup, had some for lunch (and you guess correctly it is stuck) so now i am belching until the inevitable (vomiting).
Went to visit my 95 year old friend for a couple of hours. I felt so uncomfortable, feeling so full and belching also as soon as I sat down I wanted to sleep.
I can feel more mouth ulcers coming, so I will have to apply tooth paste ASAP.
I am feeling so sleepy and it is only after 8 pm. I can't go to bed yet as the food is still stuck in my oesophagus and it need to come out, when that happens I will go to bed.
I actually went to the sales (one shop with Bob) and bought cards and wrapping papers.
Came home made some soup, had some for lunch (and you guess correctly it is stuck) so now i am belching until the inevitable (vomiting).
Went to visit my 95 year old friend for a couple of hours. I felt so uncomfortable, feeling so full and belching also as soon as I sat down I wanted to sleep.
I can feel more mouth ulcers coming, so I will have to apply tooth paste ASAP.
I am feeling so sleepy and it is only after 8 pm. I can't go to bed yet as the food is still stuck in my oesophagus and it need to come out, when that happens I will go to bed.
Maureen's blog: Boxing day
Maureen's blog: Boxing day: Went to bed just after 2 am, could not stop vomiting (no I was not drinking excessively or even over eating) I would so love it, if that was...
Monday, December 26, 2011
Boxing day
Went to bed just after 2 am, could not stop vomiting (no I was not drinking excessively or even over eating) I would so love it, if that was the problem. Stayed in bed until this morning.
Got up about 9 am to help prepare the dinner as we were having our Christmas meal today and my mother was coming to spend the day with us.
Had a lovely meal but it had no taste as usually (I have been trying to eat pineapple as this should help with my taste buds). I only ate a small amount but it still decided to stay in my oesophagus, so now I am in the bathroom where my dinner has decided it is better up and out than in my stomach.
Because my mother was here I rang and spoke to relatives abroad so she could also speak to these relatives (some were mourning the loss of a mother, daughter, niece and cousin) this helped me to put my life in perspective, as there is always someone worse off than you and there is always someone who need to hear a kind word of comfort or encouragement.
The good thing about today is the chemotherapy is wearing off so my head feel so clear only some one forget to tell the rest of my body.
I have not been very breathless today (thank you Jesus), I had a stress free day, I decided to not let anything bother me, big or small. Had a nice surprise, my brother rang me from the US tonight to wish me Merry Christmas.
Oh! had a piece of fruit cake and it also decided to come back up almost immediately, so now I am in bed (where I can't be tempted to try and eat).
I have been falling asleep all day on the sofa and now I am in bed I am wide awake. Lights went off at about 11 pm fell asleep, woke up at 11:30 started to vomit in my sleep (hoping this won't be a long night). Because I had to jump out of bed quickly I am now breathless and coughing again.
Got up about 9 am to help prepare the dinner as we were having our Christmas meal today and my mother was coming to spend the day with us.
Had a lovely meal but it had no taste as usually (I have been trying to eat pineapple as this should help with my taste buds). I only ate a small amount but it still decided to stay in my oesophagus, so now I am in the bathroom where my dinner has decided it is better up and out than in my stomach.
Because my mother was here I rang and spoke to relatives abroad so she could also speak to these relatives (some were mourning the loss of a mother, daughter, niece and cousin) this helped me to put my life in perspective, as there is always someone worse off than you and there is always someone who need to hear a kind word of comfort or encouragement.
The good thing about today is the chemotherapy is wearing off so my head feel so clear only some one forget to tell the rest of my body.
I have not been very breathless today (thank you Jesus), I had a stress free day, I decided to not let anything bother me, big or small. Had a nice surprise, my brother rang me from the US tonight to wish me Merry Christmas.
Oh! had a piece of fruit cake and it also decided to come back up almost immediately, so now I am in bed (where I can't be tempted to try and eat).
I have been falling asleep all day on the sofa and now I am in bed I am wide awake. Lights went off at about 11 pm fell asleep, woke up at 11:30 started to vomit in my sleep (hoping this won't be a long night). Because I had to jump out of bed quickly I am now breathless and coughing again.
Maureen's blog: Christmas
Maureen's blog: Christmas: Went or bed at 3 am after vomiting all night. Got up at 5:30 am, went back to bed at 7am, slept until just after 9 am. Got up feeling so ve...
Sunday, December 25, 2011
Christmas
Went or bed at 3 am after vomiting all night. Got up at 5:30 am, went back to bed at 7am, slept until just after 9 am.
Got up feeling so very tired but it is Christmas day so there are presents to open.
After opening some presents with my family we went to church and then home again to open more presents (still feeling very tired).
We then went to friends for the rest of the day, had a wonderful time and meal, I tried not to eat too much (felt so tired and my dinner is once again in my oesophagus instead of my stomach), there are no bathroom down stairs so I can only go up the stairs once for the day.
I did manage to go to the bathroom once which made me very breathless (and of course my dinner was up again, and when I got home).
I had such a rush of adrenaline today that I did not ache and my head felt almost clear.
It is past midnight and I am still very tired but cannot go to bed yet as I am so uncomfortable (there is still food in my oesophagus).
Got up feeling so very tired but it is Christmas day so there are presents to open.
After opening some presents with my family we went to church and then home again to open more presents (still feeling very tired).
We then went to friends for the rest of the day, had a wonderful time and meal, I tried not to eat too much (felt so tired and my dinner is once again in my oesophagus instead of my stomach), there are no bathroom down stairs so I can only go up the stairs once for the day.
I did manage to go to the bathroom once which made me very breathless (and of course my dinner was up again, and when I got home).
I had such a rush of adrenaline today that I did not ache and my head felt almost clear.
It is past midnight and I am still very tired but cannot go to bed yet as I am so uncomfortable (there is still food in my oesophagus).
Saturday, December 24, 2011
Christmas eve
I was very tired yesterday, I tried to rest but could not, a friend came to visit so I could not go to bed until late. I did manage to stay in bed all night until the morning (woke up at about 9:30 am). I stayed in bed read and prayed.
Got out of bed and had a nice relaxing bath. Went to lunch with my family (did not have any breakfast, so it was really brunch) when I got back home it went down the toilet.
So far everything I eat and drink today just keep coming up.
I am still breathless even without any movement or exertion, my body is still aching but I am trying to be positive.
Got out of bed and had a nice relaxing bath. Went to lunch with my family (did not have any breakfast, so it was really brunch) when I got back home it went down the toilet.
So far everything I eat and drink today just keep coming up.
I am still breathless even without any movement or exertion, my body is still aching but I am trying to be positive.
Maureen's blog: So tired
Maureen's blog: So tired: Before going to bed last night I just kept vomiting, I was very exhausted. Slept until about 4:30 am, got up had a drink and watch more Crim...
Friday, December 23, 2011
Maureen's blog: So tired
Maureen's blog: So tired: Had another awful night of coughing, sleeplessness and indigestion (watched more Christmas movies until the early hours). I cannot believe ...
So tired
Before going to bed last night I just kept vomiting, I was very exhausted. Slept until about 4:30 am, got up had a drink and watch more Crime and Investigation TV. Went back to bed at six am.
Read and fell asleep until midday, got up had brunch instead if breakfast.
I am still tired, my body is aching so much again and everything I ate is now lodged in my oesophagus, (this is so uncomfortable, and I keep belching) so I cannot have any dinner until all the food and drink is up again.
Manage to have some soup and because I had a visitor a small piece of cake (hoping and praying it will stay down).
My head is aching so much and I am still breathless (I am alive) so got to thank the Almighty each day for every breath I breathe
Read and fell asleep until midday, got up had brunch instead if breakfast.
I am still tired, my body is aching so much again and everything I ate is now lodged in my oesophagus, (this is so uncomfortable, and I keep belching) so I cannot have any dinner until all the food and drink is up again.
Manage to have some soup and because I had a visitor a small piece of cake (hoping and praying it will stay down).
My head is aching so much and I am still breathless (I am alive) so got to thank the Almighty each day for every breath I breathe
Thursday, December 22, 2011
So tired
Had another awful night of coughing, sleeplessness and indigestion (watched more Christmas movies until the early hours).
I cannot believe I was awake early in the morning (yes about 7 am). I had an appointment to go to with my son later. I had my breakfast and we went out with me still suffering from indigestion. I decided that I might have to go to my doctor as every thing I tried to get rid of this indigestion just wasn't working (to my surprise it started to ease, mid afternoon).
I am still very breathless, had friends round and each time I went to the front door was very traumatic as I was so breathless.
I am now so tired I am feeling exhausted, I am off to bed.
I cannot believe I was awake early in the morning (yes about 7 am). I had an appointment to go to with my son later. I had my breakfast and we went out with me still suffering from indigestion. I decided that I might have to go to my doctor as every thing I tried to get rid of this indigestion just wasn't working (to my surprise it started to ease, mid afternoon).
I am still very breathless, had friends round and each time I went to the front door was very traumatic as I was so breathless.
I am now so tired I am feeling exhausted, I am off to bed.
Maureen's blog: Blood test
Maureen's blog: Blood test: Woke up at 1 am coughing, this woke Bob up, so he decided to go and make me a hot drink (I decided to get out of bed as the coughing was get...
Wednesday, December 21, 2011
Maureen's blog: Manicure
Maureen's blog: Manicure: I woke up at 5 am still feeling very stressed, tried to go back to sleep but could not as I kept going over the events of the weekend. I de...
Blood test
Woke up at 1 am coughing, this woke Bob up, so he decided to go and make me a hot drink (I decided to get out of bed as the coughing was getting worse and Bob needed his sleep). I stayed up for two hours before going back to bed.
It is now 6 am and I am awake again (even though I am feeling so tired). My alarm is set to go off at 7 am so I can get ready to go to the hospital for blood test (this I have to have done two weeks before the steroid infusion and prior to chemotherapy, the next day). I got to the hospital for 8 am so I can park outside the department I need, any later and I will not be able to get a disabled parking (I cannot park in the normal car park as it is too far to walk and I would end up being admitted as an in patient). A nurse tried to ask me a question but I just could not reply as I was breathless again (I only walked less than 50 yards) to the department.
Had some lunch with (James my son) and later went to visit my neighbour, who is 89 years old. I started to get very hot while I was in her house and the breathlessness started again so I had to leave (slowly of course).
You may be wondering why I am going to visit people when I am not well, the more you give the more you receive and there are always others in more need than yourself (no matter what your situation is).
I am always getting the comment "you look so well," I can't believe you are ill (my own doctor says the same to me every time I visit the surgery you look so well no one will believe how ill you are).
It is nearly eight o'clock and I haven't had any dinner because my neighbour gave me a mince pie (this is a pie made from minced fruit eg currants, sultanas etc, which is eaten at Christmas time in the UK) and it has given me awful indigestion (i am in agony with chest pain and burning in my throat). Took some antacid medication, which made me belch. Ate some fruit, this only made the belching worse (this is because the fruit and drink that I had is now in my oesophagus instead of my stomach) and of course the only way is up. Now the burning in my throat is back.
I am feeling so hungry now as I have only had lunch, that one mince pie and then the fruit which is now down the pan. I am going to try a small trifle, it has fresh cream which I am hoping will soothe the burning in my throat as it is now 11pm and time for bed. Oh dear! that didn't work! I am off to bed.
It is now 6 am and I am awake again (even though I am feeling so tired). My alarm is set to go off at 7 am so I can get ready to go to the hospital for blood test (this I have to have done two weeks before the steroid infusion and prior to chemotherapy, the next day). I got to the hospital for 8 am so I can park outside the department I need, any later and I will not be able to get a disabled parking (I cannot park in the normal car park as it is too far to walk and I would end up being admitted as an in patient). A nurse tried to ask me a question but I just could not reply as I was breathless again (I only walked less than 50 yards) to the department.
Had some lunch with (James my son) and later went to visit my neighbour, who is 89 years old. I started to get very hot while I was in her house and the breathlessness started again so I had to leave (slowly of course).
You may be wondering why I am going to visit people when I am not well, the more you give the more you receive and there are always others in more need than yourself (no matter what your situation is).
I am always getting the comment "you look so well," I can't believe you are ill (my own doctor says the same to me every time I visit the surgery you look so well no one will believe how ill you are).
It is nearly eight o'clock and I haven't had any dinner because my neighbour gave me a mince pie (this is a pie made from minced fruit eg currants, sultanas etc, which is eaten at Christmas time in the UK) and it has given me awful indigestion (i am in agony with chest pain and burning in my throat). Took some antacid medication, which made me belch. Ate some fruit, this only made the belching worse (this is because the fruit and drink that I had is now in my oesophagus instead of my stomach) and of course the only way is up. Now the burning in my throat is back.
I am feeling so hungry now as I have only had lunch, that one mince pie and then the fruit which is now down the pan. I am going to try a small trifle, it has fresh cream which I am hoping will soothe the burning in my throat as it is now 11pm and time for bed. Oh dear! that didn't work! I am off to bed.
Tuesday, December 20, 2011
Manicure
I woke up at 5 am still feeling very stressed, tried to go back to sleep but could not as I kept going over the events of the weekend.
I decided to get up and get dress to clear my head, then have my breakfast.
I was just getting ready to watch day time television when my iPad started ringing, it was a relative in Jamaica trying to reach me on Skype.
This took me to about 11:30 am I had a drink and got ready to go for an early Christmas present from a friend, "a manicure" It was good to sit relax and be pampered.
After my manicure I decided to visit my 95 year old friend (another pampering visit) she likes to mother, me I get fussed and looked after for a few hours.
I did all of this despite been very breathless. This breathlessness is just getting out of control.
You are wondering how am I really feeling today, well! I still don't feel well (i felt quite dizzy all day, my head hurts and my body is tingling all over) every thing I eat or drink taste awful.
I am now so very tired.
Tried to get ready for bed at 10 pm got very breathless and started to cough and vomit at the same time (how distressing is that?). Managed to get to bed some time after.
I decided to get up and get dress to clear my head, then have my breakfast.
I was just getting ready to watch day time television when my iPad started ringing, it was a relative in Jamaica trying to reach me on Skype.
This took me to about 11:30 am I had a drink and got ready to go for an early Christmas present from a friend, "a manicure" It was good to sit relax and be pampered.
After my manicure I decided to visit my 95 year old friend (another pampering visit) she likes to mother, me I get fussed and looked after for a few hours.
I did all of this despite been very breathless. This breathlessness is just getting out of control.
You are wondering how am I really feeling today, well! I still don't feel well (i felt quite dizzy all day, my head hurts and my body is tingling all over) every thing I eat or drink taste awful.
I am now so very tired.
Tried to get ready for bed at 10 pm got very breathless and started to cough and vomit at the same time (how distressing is that?). Managed to get to bed some time after.
Maureen's blog: Chest pain
Maureen's blog: Chest pain: Woke up about 5am with awful chest pain as if I am having a heart attack (I am used to this so I don't get the paramedics, I once spent near...
Monday, December 19, 2011
Maureen's blog: Another sleepless night
Maureen's blog: Another sleepless night: After been so very upset yesterday I knew I would be in for another sleepless night (I did try going to bed but only had about two hours of ...
Sunday, December 18, 2011
Chest pain
Woke up about 5am with awful chest pain as if I am having a heart attack (I am used to this so I don't get the paramedics, I once spent nearly three weeks in hospital because of this type of pain, so now I know it is all to do with the lupus I just have a hot drink when the pain subsides).
My taste buds have been compromised by the chemo so now everything include drinks taste different. I have been advised by the chemo nurse to eat pineapple. I had some tinned ones last week and I have some fresh ones now but can't be bothered to prepare it for eating.
I am having problems with breathlessness again today, so I will definitely be
asking the consultant if I can go on the lung transplant list.
There is also the problem with the vasculitis of my brain, so I am not sure about the transplant (oh well! More prayers for healing will be sent up to Him above).
Oh! went to the pharmacy to get my monthly prescription and I had to take one of my son with me as I am feeling very unsteady and I am still weak.
I don't think I had enough to drink today, am going to try and have a drink now as I have to keep my kidneys flushed at all times. I also have not had enough to eat (I am now feeling thirsty and hungry and it is past 9pm) and I would rather not bother to have anything now.
It is nearly 9:30 pm and I am so tired as I have been awake since 5am ( I decided that sleeping was far more beneficial than food) so I am switching off now.
My taste buds have been compromised by the chemo so now everything include drinks taste different. I have been advised by the chemo nurse to eat pineapple. I had some tinned ones last week and I have some fresh ones now but can't be bothered to prepare it for eating.
I am having problems with breathlessness again today, so I will definitely be
asking the consultant if I can go on the lung transplant list.
There is also the problem with the vasculitis of my brain, so I am not sure about the transplant (oh well! More prayers for healing will be sent up to Him above).
Oh! went to the pharmacy to get my monthly prescription and I had to take one of my son with me as I am feeling very unsteady and I am still weak.
I don't think I had enough to drink today, am going to try and have a drink now as I have to keep my kidneys flushed at all times. I also have not had enough to eat (I am now feeling thirsty and hungry and it is past 9pm) and I would rather not bother to have anything now.
It is nearly 9:30 pm and I am so tired as I have been awake since 5am ( I decided that sleeping was far more beneficial than food) so I am switching off now.
Maureen's blog: Another day
Maureen's blog: Another day: Well it's Saturday, after going to bed at 1am i was up at 5:30 coughing so I got up and had a hot drink, I then decided to have my breakfast...
Another sleepless night
After been so very upset yesterday I knew I would be in for another sleepless night (I did try going to bed but only had about two hours of sleep).
My body is now aching all over, I am in such a lot of pain especially in my back.
The pain is not as severe now but I am having problems breathing. I went to make a sandwich and now I can't eat it as I am having difficulty breathing (which causes me to cough, this is because I am not getting enough oxygen in my lungs).
Bending down is a challenge as this seems to affect my breathing and the coughing will start.
Massive headache again today worse when I cough.
Fell asleep whilst watching television (I was so exhausted from lack of sleep), jumped up suddenly as I had started to vomit in my sleep.
I had a friend came to visit me it was such a lovely surprise as I was not expecting her. When she was ready to leave I went to the door to see her out (it felt very cold as I opened the front door) now I am breathless and coughing (my head hurts each time I cough).
This coughing is usually quite distressing for me and others around me. I have pulmonary fibrosis (which means the base of my lungs are damaged by thickening and scarring, which is then causing less oxygen to go into my blood). I will be asking my consultant if I can have lung transplant. So far there is no improvement since having the chemo and I don't want to have to go in a wheelchair or even start to carry oxygen around but if either or both will help to improve the quality of my life then I will have to succumb.
I am in bed now still in pain but it could be due to some stress in my life (i am finding it difficult to breathe properly right now, even though I am sitting in bed).
I have to praise God each day for His Grace and Mercy and His love for me, for without Him I would be nothing (even with all my faults and oh! There are many) but with God I am someone special.
My body is now aching all over, I am in such a lot of pain especially in my back.
The pain is not as severe now but I am having problems breathing. I went to make a sandwich and now I can't eat it as I am having difficulty breathing (which causes me to cough, this is because I am not getting enough oxygen in my lungs).
Bending down is a challenge as this seems to affect my breathing and the coughing will start.
Massive headache again today worse when I cough.
Fell asleep whilst watching television (I was so exhausted from lack of sleep), jumped up suddenly as I had started to vomit in my sleep.
I had a friend came to visit me it was such a lovely surprise as I was not expecting her. When she was ready to leave I went to the door to see her out (it felt very cold as I opened the front door) now I am breathless and coughing (my head hurts each time I cough).
This coughing is usually quite distressing for me and others around me. I have pulmonary fibrosis (which means the base of my lungs are damaged by thickening and scarring, which is then causing less oxygen to go into my blood). I will be asking my consultant if I can have lung transplant. So far there is no improvement since having the chemo and I don't want to have to go in a wheelchair or even start to carry oxygen around but if either or both will help to improve the quality of my life then I will have to succumb.
I am in bed now still in pain but it could be due to some stress in my life (i am finding it difficult to breathe properly right now, even though I am sitting in bed).
I have to praise God each day for His Grace and Mercy and His love for me, for without Him I would be nothing (even with all my faults and oh! There are many) but with God I am someone special.
Saturday, December 17, 2011
Another day
Well it's Saturday, after going to bed at 1am i was up at 5:30 coughing so I got up and had a hot drink, I then decided to have my breakfast another hot drink. I went back to bed at about 7:30. Woke up again about 10 am. I thought it would be just another day but it turned out to be something else.
Oh yea! Had a nice relaxing bath.
A friend came to visit went to open the door and got very breathless (it took a while before I could speak to greet her) I had a great time we talked and tried putting the world to rights.
My friend has now left and I am feeling very shaky as I have upset a family member. I am now in for a sleepless night (what's new).
Oh yea! Had a nice relaxing bath.
A friend came to visit went to open the door and got very breathless (it took a while before I could speak to greet her) I had a great time we talked and tried putting the world to rights.
My friend has now left and I am feeling very shaky as I have upset a family member. I am now in for a sleepless night (what's new).
Maureen's blog: How am I feeling today?
Maureen's blog: How am I feeling today?: Went to bed early last night, I felt so tired but I kept coughing so I got up at 4am (as I did not want to wake up Bob) to make a hot drink...
Friday, December 16, 2011
How am I feeling today?
Went to bed early last night, I felt so tired but I kept coughing so I got up at 4am (as I did not want to wake up Bob) to make a hot drink. I went back to bed at 6am and after reading my bible and praying fell asleep until about 10:30am. Woke up expecting to see snow ( we were suppose to get snow), It hasn't arrived yet, so I decided to go to the shop as I have been in all week and it might be a while before I can go out if the snow does come.
I only was out for about half an hour, got back and I started to feel very light headed worse if I hold my head down (as if I was about to faint), this is how I usually feel each time I travel via aeroplane. I now have a head ache (not sure if my blood pressure is too low or high).
Moving about and even sitting still is causing me to be very breathless because of the change in the weather, even though it is very warm indoors.
A friend, her mother and son came to visit me today, they were very compassionate and thoughtful (I wanted to cry) at their kindness, they saw I was not able to breathe properly so they took charge to make drinks and sandwiches, then they did the washing up ( even though I have a dish washing machine).
My day is nearly over I am not feeling any better and I am also wide awake when I should be asleep now.
Oh! Another friend will be visiting tomorrow (Saturday), I am so happy.
No! Not again! the dreaded mouth ulcers are back (i shall have to remind them that they are not my friend) more discomfort before bed. Oh well off to bed I go.
I only was out for about half an hour, got back and I started to feel very light headed worse if I hold my head down (as if I was about to faint), this is how I usually feel each time I travel via aeroplane. I now have a head ache (not sure if my blood pressure is too low or high).
Moving about and even sitting still is causing me to be very breathless because of the change in the weather, even though it is very warm indoors.
A friend, her mother and son came to visit me today, they were very compassionate and thoughtful (I wanted to cry) at their kindness, they saw I was not able to breathe properly so they took charge to make drinks and sandwiches, then they did the washing up ( even though I have a dish washing machine).
My day is nearly over I am not feeling any better and I am also wide awake when I should be asleep now.
Oh! Another friend will be visiting tomorrow (Saturday), I am so happy.
No! Not again! the dreaded mouth ulcers are back (i shall have to remind them that they are not my friend) more discomfort before bed. Oh well off to bed I go.
Maureen's blog: Chemotherapy treatment
Maureen's blog: Chemotherapy treatment: My consultant had a discussion with his colleagues about the correct treatment I should have and they decided it should be chemotherapy. Of...
Wednesday, December 14, 2011
Chemotherapy treatment
My consultant had a discussion with his colleagues about the correct treatment I should have and they decided it should be chemotherapy.
Of course before treatment could commence I had to go and have a echocardiograph (which is a scan of my heart), then blood tests.
Next, the appointment! first I have to go to the Rheumatology Day unit the day before, to have an infusion of steroid (now my face is the shape of a moon, and all the fat in my body has gone to my belly). The next day, back to the Day unit two hours before chemo to take a tablet to prevent damage to my kidneys and bladder. Now it's off to the chemotherapy Day unit.
After waiting for over an hour, the cannula was finally put in and I was given anti sickness medication before the chemo. Then it was back to the Rheumatology department to wait another two hours as I had to be given the medication to prevent damage to my kidneys and bladder again. I was finally allowed home with more medication to take six hours after chemo to prevent damage to, (yes! you have guessed) my kidneys and bladder.
Now I am back home and I just want to sleep, I am feeling so lethargic and weak.
I have been instructed to take my temperature every day as I may not know I have an infection because the chemotherapy is now going to suppress my immune system (which is already not working properly). I also have to stay away from people with infections.
Oh! Did I say my hair is going to fall out as the chemotherapy will kill the good and bad cells (the doctor informed me the day before treatment should begin as she was getting me to sign the consent form).
For about a week or so after treatment I am weak, everything taste awful, I am hot then cold and just want to sleep.
Anyway now I am having this treatment, how am I really feeling? No different. I am still weak, in pain, cannot walk or move quickly as I get out of breath (when this happens it can take up to about fifteen minutes for me to start breathing properly once more, this includes talking). This always frightens me especially when I am on my own, as I would not be able to call an ambulance (because I would not be able to speak).
I have been having the chemotherapy once a month since October and I have not seen my consultant yet so I don't know how long I am suppose to have this treatment for (just had an appointment for January) so I will be told more then.
Of course before treatment could commence I had to go and have a echocardiograph (which is a scan of my heart), then blood tests.
Next, the appointment! first I have to go to the Rheumatology Day unit the day before, to have an infusion of steroid (now my face is the shape of a moon, and all the fat in my body has gone to my belly). The next day, back to the Day unit two hours before chemo to take a tablet to prevent damage to my kidneys and bladder. Now it's off to the chemotherapy Day unit.
After waiting for over an hour, the cannula was finally put in and I was given anti sickness medication before the chemo. Then it was back to the Rheumatology department to wait another two hours as I had to be given the medication to prevent damage to my kidneys and bladder again. I was finally allowed home with more medication to take six hours after chemo to prevent damage to, (yes! you have guessed) my kidneys and bladder.
Now I am back home and I just want to sleep, I am feeling so lethargic and weak.
I have been instructed to take my temperature every day as I may not know I have an infection because the chemotherapy is now going to suppress my immune system (which is already not working properly). I also have to stay away from people with infections.
Oh! Did I say my hair is going to fall out as the chemotherapy will kill the good and bad cells (the doctor informed me the day before treatment should begin as she was getting me to sign the consent form).
For about a week or so after treatment I am weak, everything taste awful, I am hot then cold and just want to sleep.
Anyway now I am having this treatment, how am I really feeling? No different. I am still weak, in pain, cannot walk or move quickly as I get out of breath (when this happens it can take up to about fifteen minutes for me to start breathing properly once more, this includes talking). This always frightens me especially when I am on my own, as I would not be able to call an ambulance (because I would not be able to speak).
I have been having the chemotherapy once a month since October and I have not seen my consultant yet so I don't know how long I am suppose to have this treatment for (just had an appointment for January) so I will be told more then.
Maureen's blog: Coping with lupus
Maureen's blog: Coping with lupus: I have had several medications along with steroid but nothing has helped. November 2009 I had a very painful flare up. Every joint and all...
Tuesday, December 13, 2011
Coping with lupus
I have had several medications along with steroid but nothing has helped. November 2009 I had a very painful flare up. Every joint and all my muscles began to hurt, I felt as if someone was pulling my joints out of their sockets. This went on until early 2010.
The lupus has damaged my lungs (pulmonary fibrosis) which is not getting better. I now cannot climb stairs or walk quickly, sometimes even getting up to answer the telephone can cause me to be very breathless. I had to have the dose of the steroid increased which started to help with my breathing. However as I started to decrease the dose my breathing became worse again.
My family and I decided to go to Jamaica for a family reunion and to be able to fly I had to stay on the increase dose of steroid. The pressure in the cabin of the aeroplane only affected me each time I stood up, so when we got back my husband and I decided to go to Tunisia. Unfortunately as soon as the plane took off I started to feel Ill as if I was going to die, so I cannot fly again. I have also started to vomit a lot mostly at nights (my food is not going into my stomach it is staying in my oesophagus) so the only way is up.
After several investigations (2011) including CT and MRI scans the doctors discovered that the lupus is now attacking the blood vessels in my brain (serious stuff this) what now? More medications!! Hope not, yes more! but no good, it's having no affect only body. So now it's chemotherapy treatment.
The lupus has damaged my lungs (pulmonary fibrosis) which is not getting better. I now cannot climb stairs or walk quickly, sometimes even getting up to answer the telephone can cause me to be very breathless. I had to have the dose of the steroid increased which started to help with my breathing. However as I started to decrease the dose my breathing became worse again.
My family and I decided to go to Jamaica for a family reunion and to be able to fly I had to stay on the increase dose of steroid. The pressure in the cabin of the aeroplane only affected me each time I stood up, so when we got back my husband and I decided to go to Tunisia. Unfortunately as soon as the plane took off I started to feel Ill as if I was going to die, so I cannot fly again. I have also started to vomit a lot mostly at nights (my food is not going into my stomach it is staying in my oesophagus) so the only way is up.
After several investigations (2011) including CT and MRI scans the doctors discovered that the lupus is now attacking the blood vessels in my brain (serious stuff this) what now? More medications!! Hope not, yes more! but no good, it's having no affect only body. So now it's chemotherapy treatment.
Maureen's blog: Coping with lupus (mixed connective tissue disorde...
Maureen's blog: Coping with lupus (mixed connective tissue disorde...: Well I was diagnosed with lupus (which is a auto immune disease) June 2006. After years of thinking I was a hypochondriac (and I am sure oth...
Monday, December 12, 2011
Coping with lupus (mixed connective tissue disorder)
Well I was diagnosed with lupus (which is a auto immune disease) June 2006. After years of thinking I was a hypochondriac (and I am sure others think the same). This was a devastating news to be given, as there is no cure and it will kill you. I was put on steroid and another medication in 2007 as the lupus had started to damage both my lungs. I have also got mixed connective tissue disorder which means anyone of my organs can get damaged by this lupus. Oh! For those of you who believe in God you might be wandering did I not ask Him to heal me. Well I did and you know what? He said my grace is sufficient.
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