Hi everyone, I know it has been awhile since I have last wrote anything. I would love to say everything is or has been wonderful but I would have to lie and well I am lousey at lying.
But before I begin I do want you to know little Miss Sierra is doing wonderful, she has been seizure free now for 4 months, she goes monday Nov 10th for her check up and things are finally giving my little doll a break. She got picked for the football season cheerleading squad and she is so happy it is all she talks about. I also got to see her in July for a week, and naturally when she left to go back home we both cried like big babies. Her weight is 42 lbs now she is still on the small size for her being 10 but the doctors are all pleased with her. She got to be tinkerbelle for halloween, her first one in such a long time. Things look so wonderful for her right now, maybe now she can be the happy little girl she deserves to be.
Now about me, I have been off of all my lupus meds because my kidneys decided to take a nice dump right after my second infusion of rituxan. I have been on what I call house arrest, I have been told avoid sick people well unless I walk up to someone and say excuse when you sneezed back there is it a cold or did something tickle your nose seemed rather pushing to me, so I basicly stay home. The pain has been unbearable even my pain management I swear by is shall we say useless. So they increased my pain meds, which has now caused me to be a person that burst into tears at the drop of a hat.
On the 4th of Nov I saw my rhuemy and he ran all the blood work, and urine test, he is hoping that things have straighten out and he can get me back on methortrix (or however you spell it ) and start my rituxan back up. BTW the lupus numbers and all were wonderful from my second infusions than wham the kidneys went south. So he pulled me off everything so not to go into renal failure again.
Yesterday was my birthday, and the day 10 years ago I was told I had lupus, and needless to say it was a emotional day for me because once again I am sitting here waiting on lab work.
Things between me and my husband is so rocky right now. My kids live in Oklahoma and we live in SC. So when I am too sick to be home alone he has to take off from work to be with me so I am not alone, which means he misses pay for that day, which is making things tight for us. He is not helping matters either he is drinking more and more at night that all we do anymore is fight. He works during the day and I sleep, he comes home starts drinking and I go into the office and lose myself in video games. At first I made excuses for his drinking, but as of lately I find myself so angry. I am fighting so hard to be well, I am dealing with SLE lupus and RA, and kidneys that want to work only when they want too, I can not understand why a healthy person would drink this way. So things are slipping into no talking. And God forbid I should start to cry, he get angry and tells me to shut my pie hole and naturally being a natural redhead I tell him to climb into another bottle of booze which just makes things even more stressful.
The icing on the cake is my best friend in the whole world is having an affair and because I think she needs to think of her husband's feelings caused us to have a major falling out. She has always been there for me, I was raised to believe when you take your wedding vows you stay faithful, she got mad and told me I was old fashion and nobody is faithful anymore. I liked to think she is wrong. So basicly since about August her and I have not spoke, before this falling out even though she lives in Oklahoma we were on the phone everyday for several hours. I miss her, but she is still mad at me for not understanding her needing attention that her husband was not giving her. And the affair ended about a month ago when his wife figured out about it. She feels I need to say I am sorry for not being there for her.
Right now I feel like I am totally alone. I am sitting here knowing I should be sleeping and resting but what I should be doing and what I can do is two totally different things. I have never been a person that cried alot, life has always been tough for me, and it made me stronger, just right now I feel like my world is crumbling all around me and I have no idea how to stop it.
Tuesday is when the labs were done, my doctor told me he would call me Wed. afternoon unless the numbers were still bad than he would have to contact my kidney doctor and take it from there. It is now early friday morning, I have Nancy Grace playing in the back ground and trying to decide if I should be scared because he has not called or to think positive that he was just busy and forgot to call me.
You all must think I am insane. Maybe I am lol. I am sitting here, crying, laughing and thinking these people will think you have gone of your rocker.
Maybe it is a form of being postal from not being out of this house all these months. Who knows, but I feel better talking to you guys, alot better then I have had in a long time.
So on that note I will close this long rambling post and actually try to get some sleep.
Thank you for listening....Dawn
But before I begin I do want you to know little Miss Sierra is doing wonderful, she has been seizure free now for 4 months, she goes monday Nov 10th for her check up and things are finally giving my little doll a break. She got picked for the football season cheerleading squad and she is so happy it is all she talks about. I also got to see her in July for a week, and naturally when she left to go back home we both cried like big babies. Her weight is 42 lbs now she is still on the small size for her being 10 but the doctors are all pleased with her. She got to be tinkerbelle for halloween, her first one in such a long time. Things look so wonderful for her right now, maybe now she can be the happy little girl she deserves to be.
Now about me, I have been off of all my lupus meds because my kidneys decided to take a nice dump right after my second infusion of rituxan. I have been on what I call house arrest, I have been told avoid sick people well unless I walk up to someone and say excuse when you sneezed back there is it a cold or did something tickle your nose seemed rather pushing to me, so I basicly stay home. The pain has been unbearable even my pain management I swear by is shall we say useless. So they increased my pain meds, which has now caused me to be a person that burst into tears at the drop of a hat.
On the 4th of Nov I saw my rhuemy and he ran all the blood work, and urine test, he is hoping that things have straighten out and he can get me back on methortrix (or however you spell it ) and start my rituxan back up. BTW the lupus numbers and all were wonderful from my second infusions than wham the kidneys went south. So he pulled me off everything so not to go into renal failure again.
Yesterday was my birthday, and the day 10 years ago I was told I had lupus, and needless to say it was a emotional day for me because once again I am sitting here waiting on lab work.
Things between me and my husband is so rocky right now. My kids live in Oklahoma and we live in SC. So when I am too sick to be home alone he has to take off from work to be with me so I am not alone, which means he misses pay for that day, which is making things tight for us. He is not helping matters either he is drinking more and more at night that all we do anymore is fight. He works during the day and I sleep, he comes home starts drinking and I go into the office and lose myself in video games. At first I made excuses for his drinking, but as of lately I find myself so angry. I am fighting so hard to be well, I am dealing with SLE lupus and RA, and kidneys that want to work only when they want too, I can not understand why a healthy person would drink this way. So things are slipping into no talking. And God forbid I should start to cry, he get angry and tells me to shut my pie hole and naturally being a natural redhead I tell him to climb into another bottle of booze which just makes things even more stressful.
The icing on the cake is my best friend in the whole world is having an affair and because I think she needs to think of her husband's feelings caused us to have a major falling out. She has always been there for me, I was raised to believe when you take your wedding vows you stay faithful, she got mad and told me I was old fashion and nobody is faithful anymore. I liked to think she is wrong. So basicly since about August her and I have not spoke, before this falling out even though she lives in Oklahoma we were on the phone everyday for several hours. I miss her, but she is still mad at me for not understanding her needing attention that her husband was not giving her. And the affair ended about a month ago when his wife figured out about it. She feels I need to say I am sorry for not being there for her.
Right now I feel like I am totally alone. I am sitting here knowing I should be sleeping and resting but what I should be doing and what I can do is two totally different things. I have never been a person that cried alot, life has always been tough for me, and it made me stronger, just right now I feel like my world is crumbling all around me and I have no idea how to stop it.
Tuesday is when the labs were done, my doctor told me he would call me Wed. afternoon unless the numbers were still bad than he would have to contact my kidney doctor and take it from there. It is now early friday morning, I have Nancy Grace playing in the back ground and trying to decide if I should be scared because he has not called or to think positive that he was just busy and forgot to call me.
You all must think I am insane. Maybe I am lol. I am sitting here, crying, laughing and thinking these people will think you have gone of your rocker.
Maybe it is a form of being postal from not being out of this house all these months. Who knows, but I feel better talking to you guys, alot better then I have had in a long time.
So on that note I will close this long rambling post and actually try to get some sleep.
Thank you for listening....Dawn