I have officially been living with the symptoms of PH for well over a year. I went to the Doctor because of it a year ago on the day after Christmas. And on January 2, 2010 I have been diagnosed for one year. This last year has been.. well, shitty actually. So I am very excited to start a new year!
I know that some of you have had wonderful years, and I am very glad for you, and I definitely wish you an even better year! I am tired of sickness, depression, loss, and everything else! So here is to a wonderful new year, full of GOOD miracles, and a lot more of nothing. I hope that isn't too much to ask the gods for, but I am asking anyways!
Happy New Years!
Thursday, December 31, 2009
Monday, December 28, 2009
Ideas?
It is 350am. Almost every day I am awake at this time. Is it because I wake up on my own? No. It is because I am woken up by the TV clear in the living room. I am extremely sensitive to sounds, apparently. I can hear the TV downstairs!! Now, I have gotten pissed before and gone to check the volume, but it a level that really is quiet! Any lower and I would have trouble listening to it myself! It isn't that I can sit in my room and hear what people are saying, or music being played or anything, I can just hear noise. But that is the problem! I guess I recognize that I "should" be able to hear it and i focus on it. Does anyone have any suggestions?
I currently have the TV in my room up so loud to drown out the sound outside, that there is no way I can sleep. I have tried putting ear plugs in, and it doesn't work. I have also tried music, and soundscape stuff. And again, in order for it to drown out that sound it is so loud I can't sleep. I can't ask Dan not to turn on the TV, because he can't sleep either, and nothing to do while sitting awake is torture. Believe me, I know!! I can't move the room I am in, and I can't move my furniture in my room either, because of cable lines, and outlets. See both of those affect this too. The staircase to my floor is across the living room from the TV and just to the left of it. My room is then just to the left of that staircase, My bed is in a continued line across my room. This layout creates a straight line from the TV to my bed. The house was made over 50 years ago, so the doors are hollow core, and nothing is anywhere close to sound proof. You can hear the backdoor shut from anywhere in the house!
Any suggestions? Any experience that would lead to advice? Would one of those "as seen on tv" door things (that are essentially one piece of foam tube on each side of the doorjam, encased in fabric so that when you open and close the door it goes with it) work do you think? Or am I doomed to forever wake up at 350am until I am exhausted to the point of passing back out?
Oh, and I forgot to mention that I already take tylenol PM to go to bed in the first place. I am desperate for good sleep! Please help!
I currently have the TV in my room up so loud to drown out the sound outside, that there is no way I can sleep. I have tried putting ear plugs in, and it doesn't work. I have also tried music, and soundscape stuff. And again, in order for it to drown out that sound it is so loud I can't sleep. I can't ask Dan not to turn on the TV, because he can't sleep either, and nothing to do while sitting awake is torture. Believe me, I know!! I can't move the room I am in, and I can't move my furniture in my room either, because of cable lines, and outlets. See both of those affect this too. The staircase to my floor is across the living room from the TV and just to the left of it. My room is then just to the left of that staircase, My bed is in a continued line across my room. This layout creates a straight line from the TV to my bed. The house was made over 50 years ago, so the doors are hollow core, and nothing is anywhere close to sound proof. You can hear the backdoor shut from anywhere in the house!
Any suggestions? Any experience that would lead to advice? Would one of those "as seen on tv" door things (that are essentially one piece of foam tube on each side of the doorjam, encased in fabric so that when you open and close the door it goes with it) work do you think? Or am I doomed to forever wake up at 350am until I am exhausted to the point of passing back out?
Oh, and I forgot to mention that I already take tylenol PM to go to bed in the first place. I am desperate for good sleep! Please help!
Friday, December 25, 2009
Merry Christmas
It has been one year since I started having problems breathing. And I feel a lot better in many ways! For that I am grateful. Thinking about it, my life has been completely changed in just a year. Some changes are normal, some not so normal. I do feel I am lucky. Why is that? I have my family and friends. I have better friends than anyone I know!
How are your Christmas' going? I hope well! I know poor Megan is hurting! *hugs* I know Grandpa is sad for what he lost, but happy for what he has. Mom is, as always, slightly overwhelmed. I personally am feeling a little subdued and melancholy. I don't know why.
I hope everyone remembers what they have, and is thankful for it. Everyone has so much to be thankful for! Christmas isn't about what you got for who, from who, or by who. It is about your family. Even the non-religious can appreciate that.
How are your Christmas' going? I hope well! I know poor Megan is hurting! *hugs* I know Grandpa is sad for what he lost, but happy for what he has. Mom is, as always, slightly overwhelmed. I personally am feeling a little subdued and melancholy. I don't know why.
I hope everyone remembers what they have, and is thankful for it. Everyone has so much to be thankful for! Christmas isn't about what you got for who, from who, or by who. It is about your family. Even the non-religious can appreciate that.
Friday, December 11, 2009
A new ER experience
I am sorry I didn't post this yesterday! I meant to but I totally spaced it!
Well, Tuesday night I was getting some water for dinner. I felt my back wet, and I wasn't too concerned. I have had that happen where the hub cracks and medicine seeps out. No biggie! Well, when I got to the table I looked at the connection on my catheter, and there was blood pouring out of it! I freaked, mom freaked! We called Denver, and while waiting for the dr to call back we called 911. I was taken to the hospital, they put a peripheral IV in and hooked my pump to that. Well, someone decided to put the blood pressure cuff on the same arm, and they blew my IV! Damnit! So another one was put in my hand.
The surgeon was not able to get in until the morning, so I was admitted. You see, they were afraid that I had a hole in my catheter somewhere, so I had to be looked at. In the morning the surgeon looked at it. Since the line had flushed fine, he hooked it up to saline for an hour to see if anything happened. Nothing did, so he hooked it back up to my pump and kept me for 2 hours. In the meantime I called the supplier. After talking to my trainer it was decided that it had to be a massive failure. They had never seen anything like it! Not only had the hub failed terribly, but either the tubing was defective or the pump wasn't working. So I was released after the 2 hours, and was told if it happened again that it was a pump problem, and to request a new pump.
So nothing big! But man was it scary to see blood pouring out of that connection piece!!!
Oh yes.. I HAVE to tell you about my little Eme!! When Kristine heard about me being in the hospital, she freaked out. She went into Eme's room and grabbed her monkey (see, Eme sleeps with this monkey all of the time) and told Eme that Aunt Anna needs the monkey for the night and gave her a unicorn instead. Eme takes the monkey from Mommy, gives it a kiss, and takes the unicorn back to her room! How sweet is that?!? She knows, she is a smart cookie and knows what she is told! I gave it back to her when I saw her the next afternoon, and she was so happy!
Well, Tuesday night I was getting some water for dinner. I felt my back wet, and I wasn't too concerned. I have had that happen where the hub cracks and medicine seeps out. No biggie! Well, when I got to the table I looked at the connection on my catheter, and there was blood pouring out of it! I freaked, mom freaked! We called Denver, and while waiting for the dr to call back we called 911. I was taken to the hospital, they put a peripheral IV in and hooked my pump to that. Well, someone decided to put the blood pressure cuff on the same arm, and they blew my IV! Damnit! So another one was put in my hand.
The surgeon was not able to get in until the morning, so I was admitted. You see, they were afraid that I had a hole in my catheter somewhere, so I had to be looked at. In the morning the surgeon looked at it. Since the line had flushed fine, he hooked it up to saline for an hour to see if anything happened. Nothing did, so he hooked it back up to my pump and kept me for 2 hours. In the meantime I called the supplier. After talking to my trainer it was decided that it had to be a massive failure. They had never seen anything like it! Not only had the hub failed terribly, but either the tubing was defective or the pump wasn't working. So I was released after the 2 hours, and was told if it happened again that it was a pump problem, and to request a new pump.
So nothing big! But man was it scary to see blood pouring out of that connection piece!!!
Oh yes.. I HAVE to tell you about my little Eme!! When Kristine heard about me being in the hospital, she freaked out. She went into Eme's room and grabbed her monkey (see, Eme sleeps with this monkey all of the time) and told Eme that Aunt Anna needs the monkey for the night and gave her a unicorn instead. Eme takes the monkey from Mommy, gives it a kiss, and takes the unicorn back to her room! How sweet is that?!? She knows, she is a smart cookie and knows what she is told! I gave it back to her when I saw her the next afternoon, and she was so happy!
Friday, December 4, 2009
That Nurse... >:(
I hate her. Dad said she has "bad bedside manners". I say she is terrible (actually, I believe very bad curse words came out of my mouth).
So the other day I looked at my dressing because it was itching so bad. For the first time, even the skin around it was itching. It was red. Mom said she wanted to look at it when I did my next change. I was gonna do it that night, but mom was sleepy! So I tried my best to wait till mom got home (yesterday... so Tuesday). I couldn't, I ended up doing it in the afternoon. I called mom and told her that I needed her to look at it when she got home. So she did. She said it looked like when I went to the doctor in November. I thought it looked bad. (but I cleaned it before mom got to see it) The drainage is a yellowish, slightly green, with a touch of red, color. i am nervous about the red. And the site itself, well that was alright, but it looks like there is a piece of the "foam" coming out. :( So I call my nurse and leave a message for her to call me asap. She calls today.
I tell her all of the above. She doesn't listen, interrupts me, and starts telling me that if I have a fever I have to go to the emergency room right away. I AM NOT CONCERNED WITH INFECTION RIGHT THIS MOMENT!!!! I wait until she stops talking, which takes forever, and tell her that I am really concerned with the "foam". She tells me there is no foam, and to go to the ER if I have a fever. GRRRRR!! I tell her again that I am not concerned with infection. She interrupts me to tell me that a fever of 100.3 or higher and I have to go to the ER, not my doctor, and after repeating that AGAIN and telling me all of the symptoms of infection (not any of the problems I am having at this time) she says that there may be foam, but that she isn't sure.
Why does she exist? I have no clue. She always gets me confused with another patient, who is on a different drug and a different dose, ALWAYS!!!! I give her my name every time I call. She is too busy doing something else at the same time (said that she does) to look me up, and just assumes. And I have to remind her every time that I have lupus, and that my lupus regularly causes me fevers (generally at night) of 100.3 or higher and that I cannot use that as a determination of infection.
So I called my new primary and asked if she could please look at it within the next few days. She said of course and I get in at 215p. After talking to the nurse in Denver I was so upset I was shaking and crying. I hate her. I will NOT talk to her again. Dan has suggested that I write a letter to my doctor, and I am going to do that. There is another nurse I can talk to and I am calling her in the future.
So the other day I looked at my dressing because it was itching so bad. For the first time, even the skin around it was itching. It was red. Mom said she wanted to look at it when I did my next change. I was gonna do it that night, but mom was sleepy! So I tried my best to wait till mom got home (yesterday... so Tuesday). I couldn't, I ended up doing it in the afternoon. I called mom and told her that I needed her to look at it when she got home. So she did. She said it looked like when I went to the doctor in November. I thought it looked bad. (but I cleaned it before mom got to see it) The drainage is a yellowish, slightly green, with a touch of red, color. i am nervous about the red. And the site itself, well that was alright, but it looks like there is a piece of the "foam" coming out. :( So I call my nurse and leave a message for her to call me asap. She calls today.
I tell her all of the above. She doesn't listen, interrupts me, and starts telling me that if I have a fever I have to go to the emergency room right away. I AM NOT CONCERNED WITH INFECTION RIGHT THIS MOMENT!!!! I wait until she stops talking, which takes forever, and tell her that I am really concerned with the "foam". She tells me there is no foam, and to go to the ER if I have a fever. GRRRRR!! I tell her again that I am not concerned with infection. She interrupts me to tell me that a fever of 100.3 or higher and I have to go to the ER, not my doctor, and after repeating that AGAIN and telling me all of the symptoms of infection (not any of the problems I am having at this time) she says that there may be foam, but that she isn't sure.
Why does she exist? I have no clue. She always gets me confused with another patient, who is on a different drug and a different dose, ALWAYS!!!! I give her my name every time I call. She is too busy doing something else at the same time (said that she does) to look me up, and just assumes. And I have to remind her every time that I have lupus, and that my lupus regularly causes me fevers (generally at night) of 100.3 or higher and that I cannot use that as a determination of infection.
So I called my new primary and asked if she could please look at it within the next few days. She said of course and I get in at 215p. After talking to the nurse in Denver I was so upset I was shaking and crying. I hate her. I will NOT talk to her again. Dan has suggested that I write a letter to my doctor, and I am going to do that. There is another nurse I can talk to and I am calling her in the future.
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