June28/05
I am getting so tired of this pain in my lungs. I have now been on two different anibiotics for pneumonia and its not getting any better. Personally I don't think its pneumonia, I've have it before and I don't remember ever feeling like this! I would love to just be able to lie down for a whole night. hmmmm, I think I remember what a full nights sleep is like....no maybe not. LOL
Went into family Dr. today, she sent me right over to the hospital for more tests. I think I will glow in the dark if they take anymore xrays of me...LOL First it was a ultra sound on my leg, since I have had some unexplained throbbing pain. Then it was for blood work, then I limped over to the other side of the hospital for a CT scan with dye. I limped back over to the other side of the hospital again by the ER department to wait for the results.
A nurse comes out of the admitting room doorway with a wheel chair and told me to sit down. I looked at her puzzled,,, "why sit down" I asked her... I mean I just spent the last 3hours walking from one end of this hospital to the other.... "Please, just sit down and I will explain it to you" she replied.
I sat, she wheeled me into a cubicle... layed my chart on the bed and said "the Dr. will be right in". She turns and leaves...I'm nervous now!
JJ has been a jem despite the fact that we have been in the "boring hospital" all day. He crawls up on the bed, I sit tapping my fingers on the arms of the wheel chair.
The Dr. comes in and picks up my chart. "We are going to admit you", he announces... "Right now" I ask? "Yes", he replies... "right now".
It seems that my 3 months with lung pain hasn't been pneumonia at all but a blood clot in my lung. Thats right, a blood clot. I could of dropped dead and they wouldn't have known why! My mind is going a mile a minute. Inside, I'm upset, I'm mad! But I keep it together, I have plans to make.
I mean I have a 4yr old with me, N is at work... I pick up the phone and call my yougest daughter. She is just getting off work. She comes over and pickes up JJ and takes him with her for a while till N gets off work. I then call N at work and explain to him what is going on. He agrees to pick up JJ from B, go home and pack me a bag and come back into town and see me at the hospital.
I get settled into a room, semi private and the TV is already hooked up... bonus. The next two days are anything but pleasant. Liquid blood thinners are shot into my stomach every few hours and blood tests every day to see how well it is being thinned out. By day 4 they switch me to just pills Warfarin, aka..rat poison,,blood thinner.... I will be on them for the rest of my life. I have yet another product of Lupus, its called "Hughes syndrome" or sticky blood. http://www.netdoctor.co.uk/diseases/facts/antiphospholipid.htm My doctor explained it like your blood is thick and resembles cottage cheese with caramel sauce on it, it just doesn't flow like its supose to.
My brother comes in and we get talking about this whole blood thing. He tells me that he had some strange antibody show up in his blood work a few years back. It was called "anticardiolipin" antibodies, and he tells me to ask my Dr if that is what I have. I write it down and sit it on my nite stand. In the morning during "rounds" I inquire about the antibody and she promiced to check on it.
I try to get comfortable and push the "up" button to raise my head up some more in the hopes of releiving the pressure on my lung when I breath. It seems like its no use, the constant throbbing when I take a breath is always there. I turn on the tiny TV and try to focus on something else, maybe some mindless game show will take my mind off my pain. I don't do hospitals well. Probably the "control" issue thing, when your in the hospital you don't have much control over anything that goes on. I just want to go home, I need a magic wand and get better faster than what is happening. I miss cuddling with N, I miss J telling me he loves me twenty times a day, I miss my animals... Please let me go home....
Wednesday, June 29, 2005
Friday, April 22, 2005
But you don't look sick !
Can someone please explain that statement to me. If I hear that one more time I am going to smash someone in the face.
Come on people, is there a specific way that someone is suppose to look when they have Lupus?
Is it just ignorance to a disease that people just don't know that much about?
Well, I was sick of hearing that so the next time someone said that to me I just looked at them and asked "What am I suppose to look like?"
That seems to work, they don't know how they are suppose to answer that.
The other good one is "Well,You look good".
My reply to that is, I'm glad I look better than I feel!"
GRRRRRRRRRRRRRRRR... ok done venting... thanks for listening!
Come on people, is there a specific way that someone is suppose to look when they have Lupus?
Is it just ignorance to a disease that people just don't know that much about?
Well, I was sick of hearing that so the next time someone said that to me I just looked at them and asked "What am I suppose to look like?"
That seems to work, they don't know how they are suppose to answer that.
The other good one is "Well,You look good".
My reply to that is, I'm glad I look better than I feel!"
GRRRRRRRRRRRRRRRR... ok done venting... thanks for listening!
Sunday, April 03, 2005
Communication , depression and faith, oh my
April 3,2005
I admit, that since I have been sick, I'm just hidden beneath the pain and depression that is almost constantly pecking away at my soul on a daily basis.
To top it off I am feeling very insecure with myself. I have become someone I do not want to be which is "dependent" on someone else. I have always prided myself in being independent, always held a job worked full time and took care of my children.. and paid my bills. I took care of everyone else! Now I no longer feel like I have the strength to go to work, exhaustion is excruciating, fatigue is constant and draining. What do I do with myself if I can't work, who am I NOW?
I was in control of myself and being a typical Virgo type personality, yes I am in some ways a control freak. Of course having OCD doesn't help much either...lol
I like to know what and when things are going to happen. With Lupus, I have lost that control factor. I now have become a shell of my former self.
I don’t know who I am each day until my eyes open and I take my first steps and see what the pain level is.
Will I be able to take a shower and raise my arms up high enough to wash my hair and then style it with a blowdryer?
Will I be able to sweep the floor, do up some dishes or even walk upstairs without being out of breath and tired to the point that I just want to curl up and go to sleep?
I cry everyday. I feel trapped in a body that is foreign and unforgiving. I am scared, of the future, of the unknown.
I no longer feel secure with whom I am. Is the relationship with N strong enough, we haven't been together that long. Will I become an inconvenience to him? Will my disease become too much for him to handle and in the end make him wish that he was with someone else and not me?
Such negative thoughts, always creeping in lately! Me the ultimate believer that I can conquer all, have lost my edge in this battle.
Faith, I have lost faith in myself, and thus have lost some faith in his ability to love me. Maybe its because we dont have a long history together. Maybe its because N is not the type of man to reach out and touch my hand and say "Sue, nothing will break my love for you, or We will be together forever regardless of what life will throw at us". Sometimes I miss those words of security, love and tenderness.
Communication, that is hard for him, hard for us as a couple. We get along so well, we do not argue or fight. We have a very good comfort level together, but we do not really talk! We talk about our day, we talk about some tv show..but we don't talk about how we "feel" about things or what we believe in. The things that we all like to hear. They never get said. That in its self is sad. When do we say them, when the person is dead and we are standing over their casket? Are we supposed to go to our graves with regrets? I dont want to, I want him to know how much he means to me now while he is alive. Why should that be so hard to convey our thougts to someone we love?
Depression is gaining on me. I dont like it, not one bit. Control issue again.(laugh) Im not a "down" person, no one would ever describe me that way. Heck I am the one who always finds something positive about every situation, I always find something funny in everything. Thats what people would say about me, I think. This negative nelly , well she is foreign to me, and not very likeable to say the least. Maybe its just from the pain, lack of sleep and being so disabled for the past four months that has me depressed. I know it is honestly wearing me down. Maybe I will have to talk to the Dr. about it, maybe feeling this way is normal. Too many questions and not enough answers!
I do know that life as I knew it no longer exists. Life as N knew it no longer exists. Somehow the two of us have to find our place in this new life, one that we can both be happy with.
I admit, that since I have been sick, I'm just hidden beneath the pain and depression that is almost constantly pecking away at my soul on a daily basis.
To top it off I am feeling very insecure with myself. I have become someone I do not want to be which is "dependent" on someone else. I have always prided myself in being independent, always held a job worked full time and took care of my children.. and paid my bills. I took care of everyone else! Now I no longer feel like I have the strength to go to work, exhaustion is excruciating, fatigue is constant and draining. What do I do with myself if I can't work, who am I NOW?
I was in control of myself and being a typical Virgo type personality, yes I am in some ways a control freak. Of course having OCD doesn't help much either...lol
I like to know what and when things are going to happen. With Lupus, I have lost that control factor. I now have become a shell of my former self.
I don’t know who I am each day until my eyes open and I take my first steps and see what the pain level is.
Will I be able to take a shower and raise my arms up high enough to wash my hair and then style it with a blowdryer?
Will I be able to sweep the floor, do up some dishes or even walk upstairs without being out of breath and tired to the point that I just want to curl up and go to sleep?
I cry everyday. I feel trapped in a body that is foreign and unforgiving. I am scared, of the future, of the unknown.
I no longer feel secure with whom I am. Is the relationship with N strong enough, we haven't been together that long. Will I become an inconvenience to him? Will my disease become too much for him to handle and in the end make him wish that he was with someone else and not me?
Such negative thoughts, always creeping in lately! Me the ultimate believer that I can conquer all, have lost my edge in this battle.
Faith, I have lost faith in myself, and thus have lost some faith in his ability to love me. Maybe its because we dont have a long history together. Maybe its because N is not the type of man to reach out and touch my hand and say "Sue, nothing will break my love for you, or We will be together forever regardless of what life will throw at us". Sometimes I miss those words of security, love and tenderness.
Communication, that is hard for him, hard for us as a couple. We get along so well, we do not argue or fight. We have a very good comfort level together, but we do not really talk! We talk about our day, we talk about some tv show..but we don't talk about how we "feel" about things or what we believe in. The things that we all like to hear. They never get said. That in its self is sad. When do we say them, when the person is dead and we are standing over their casket? Are we supposed to go to our graves with regrets? I dont want to, I want him to know how much he means to me now while he is alive. Why should that be so hard to convey our thougts to someone we love?
Depression is gaining on me. I dont like it, not one bit. Control issue again.(laugh) Im not a "down" person, no one would ever describe me that way. Heck I am the one who always finds something positive about every situation, I always find something funny in everything. Thats what people would say about me, I think. This negative nelly , well she is foreign to me, and not very likeable to say the least. Maybe its just from the pain, lack of sleep and being so disabled for the past four months that has me depressed. I know it is honestly wearing me down. Maybe I will have to talk to the Dr. about it, maybe feeling this way is normal. Too many questions and not enough answers!
I do know that life as I knew it no longer exists. Life as N knew it no longer exists. Somehow the two of us have to find our place in this new life, one that we can both be happy with.
Sunday, March 27, 2005
Just can't breath
March 27/05- I woke again in really bad pain just under my breast on the right hand side. It’s so bad I can’t breath properly. I have to take tiny little breaths to get some air. I’m scared that the Lupus has now affected my lungs. I’ve spent another wrestless night sitting upright on the sofa, unable to sleep just passing out in 15 minute intervals.
When N woke up I tell him I think we should go to the hospital. I hate the hospital, so I know I must be feeling bad to even suggest going in. N suggests packing a bag in case they tell me I have to stay and I reluctantly go pack one. JJ is going to his mothers for Easter so that frees us up for a few hours.. but I pack a bag for him as well, just in case he has to stay with her while I am in the hospital.
Fortunately we are taken right into an exam room. N said that the nurse wrote down “no breath sounds on right side” after the initial exam; so I guess that helped speed things up. Our hospital is famous for 12-18hrs waits in the ER to see a Dr. I avoided that today with my symptoms.
The Dr had an attitude problem or certainly rubbed me the wrong way with his questions. He was more interested in giving me a shot of narcotic than anything else. I refused to take what ever it was he was trying to push due to my allergies and told him I could handle the pain, that’s not what I was there for. I wanted to know what was causing the pain!
He orders a chest x-ray. Again he offers me oxycodone, or morphine. Again I declined.
After it was done they left me sitting in the hallway with the x-rays on my lap in a big brown envelope. I peaked. The right side was almost white, the left dark. I’m not sure what its suppose to be all dark or all light, but having one side different than the other, well I don’t think this is a good sign.
Dr. comes back in and says “I think its pneumonia, it looks like pneumonia”. His confidence does not overwhelm me at this moment. He gives me a prescription for antibiotic and sends me home. Total time in ER 3 hrs. Now I think that is a record! Unfortunately, I've had pneumonia before and I just don't feel like this is what I have now. I'm hope resting
When N woke up I tell him I think we should go to the hospital. I hate the hospital, so I know I must be feeling bad to even suggest going in. N suggests packing a bag in case they tell me I have to stay and I reluctantly go pack one. JJ is going to his mothers for Easter so that frees us up for a few hours.. but I pack a bag for him as well, just in case he has to stay with her while I am in the hospital.
Fortunately we are taken right into an exam room. N said that the nurse wrote down “no breath sounds on right side” after the initial exam; so I guess that helped speed things up. Our hospital is famous for 12-18hrs waits in the ER to see a Dr. I avoided that today with my symptoms.
The Dr had an attitude problem or certainly rubbed me the wrong way with his questions. He was more interested in giving me a shot of narcotic than anything else. I refused to take what ever it was he was trying to push due to my allergies and told him I could handle the pain, that’s not what I was there for. I wanted to know what was causing the pain!
He orders a chest x-ray. Again he offers me oxycodone, or morphine. Again I declined.
After it was done they left me sitting in the hallway with the x-rays on my lap in a big brown envelope. I peaked. The right side was almost white, the left dark. I’m not sure what its suppose to be all dark or all light, but having one side different than the other, well I don’t think this is a good sign.
Dr. comes back in and says “I think its pneumonia, it looks like pneumonia”. His confidence does not overwhelm me at this moment. He gives me a prescription for antibiotic and sends me home. Total time in ER 3 hrs. Now I think that is a record! Unfortunately, I've had pneumonia before and I just don't feel like this is what I have now. I'm hope resting
Tuesday, March 15, 2005
Am I feeling better yet?
March 15/05- I am still nauseous and basically just not feeling very well on this new medication. My bowel movements are still liquefied frequent and gold in colour. My urine is also a strange yellow colour and the odor has changed. I can’t find any information on if this is normal or not. I certainly don’t feel normal in any respect.
I really am trying not to complain to much about how I am feeling, there is nothing worse than a person whining all the time about their health. I am still taking the prednisone, and my face is changing shape. At first I thought it was just my foggy eyes looking at an unfamiliar face in the mirror. But its not, it really is me. Well the voice sounds like me. lol
I don't like the changes and even though I don't have any appetite I look bloated all over. I am gaining weight. Oh lord, just what I need!
March 22/05 – I looked up Methotrexate on the net today what a chore that was. Just trying to sit and type with these fingers that just don't want to move as fast as I want them to! I think I have been transformed into an 80 yr old woman in three short months. Anyway I found that Ibuprofen shouldn’t be taken at the same time as this drug. I am taking eight pills a day! Why would the Dr. not tell me this? Is this why I am feeling so bad since I started taking this drug?
I have decided to stop taking the Ibuprofen and just take the acetaminophen and see if that makes a difference after my dose of Methotrexate on Saturday. I don’t like the idea of not taking the Ibuprofen because I don’t find that acetaminophen cuts through the pain at all with me, but I don’t find I have any choice at this point. I have to find a way to take Methotrexate and be able to function during the day at the same time.
I have a life to lead, I have a 5yr old child to look after. Luckily he is old enough to be a little help to me... but I am the adult, I have to be the one to make sure his needs are being met, and that means I don't have time to be wallowing in my self pity!
I really am trying not to complain to much about how I am feeling, there is nothing worse than a person whining all the time about their health. I am still taking the prednisone, and my face is changing shape. At first I thought it was just my foggy eyes looking at an unfamiliar face in the mirror. But its not, it really is me. Well the voice sounds like me. lol
I don't like the changes and even though I don't have any appetite I look bloated all over. I am gaining weight. Oh lord, just what I need!
March 22/05 – I looked up Methotrexate on the net today what a chore that was. Just trying to sit and type with these fingers that just don't want to move as fast as I want them to! I think I have been transformed into an 80 yr old woman in three short months. Anyway I found that Ibuprofen shouldn’t be taken at the same time as this drug. I am taking eight pills a day! Why would the Dr. not tell me this? Is this why I am feeling so bad since I started taking this drug?
I have decided to stop taking the Ibuprofen and just take the acetaminophen and see if that makes a difference after my dose of Methotrexate on Saturday. I don’t like the idea of not taking the Ibuprofen because I don’t find that acetaminophen cuts through the pain at all with me, but I don’t find I have any choice at this point. I have to find a way to take Methotrexate and be able to function during the day at the same time.
I have a life to lead, I have a 5yr old child to look after. Luckily he is old enough to be a little help to me... but I am the adult, I have to be the one to make sure his needs are being met, and that means I don't have time to be wallowing in my self pity!
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