I really don't know why I bother at times :(
just breath is all I say to myself.. those ppl do not matter let them go about their ways and know what is true to you! (my husb n 3 boys)/
But it is so hard. Why .. WHy???? be respectful of others.. it's such bs!!
I just hate that I allow these thoughts to get in my head and say it's obviously you. When I really know better.
I know that I'm NOT that person!
whatever tho.....
I'm stuck again and ya what.. which ever what. I don't .. no I do care .. just wished someone cared more!
Tuesday, August 6, 2013
Wednesday, July 3, 2013
Truth.. where does it get me?????
SO I've been declined for a transplant. GO figure.
I was honest and here I am..
I was honest and here I am..
Monday, April 15, 2013
Saw my Hepatologist here last Friday. He works with the team in LA so I can see him here in Vegas and then not have to make such frequent trips to LA. That's a good thing!
What pissed me off tho was the nurse was asking the background questions, which she had everything from USC of my history, so of course it's all duplicate. But she's having to do it all herself. She completely got after me for my diet, because my feet were slightly swollen. (they swell fast if I don't stick to my low sodium). But she's just all going on and on. And I just wanted to say really?? You really don't think I understand how this fucking works. Dumb bitch! She tells me that the Dr is going to have a fit when he sees me. And then the last part was I told her about an Eval I had to have back in LA and she's like cuz of why. I said because of my ED. Which she's like you didn't say anything abou that! You need to tell me everything. Well you know what you didn't bother asking either, and I just simply was answering your questions about health wasn't trying to decive her or not tell her. Why would I tell everyone out at USC and they have it documented to then lie to this dumb nurse.
So here I am now pissed off and ready to fight. And all I can think is if that Dr. even dares to lecture me I probably will go off. Like if he addresses it fine and I'll be okay but if he came in like how she was saying I was going to have a FIT! Luckily for me and him, he didn't. He actually came in and was like I talked with Dr. Donovan in LA and know all about you. He wanted to switch up some medicines which he thinks will be better in the long run. And he also said that we can controll the AIH with medicine and I wouldn't need to have a transplant but we would continue to go with placing me on the list. I was super excited. One that he knew what the hell was going on, he was very direct, and he didn't even mention about my diet or anything :P, and the fact that he wanted to change up meds because that will help with things as well. Well as long as my body takes it.. so Fingers Crossed.
So that's my update. Pretty positive I thought. I'm happy with it:) Well as long as I lose weight, then I'll definetly be happy.
What pissed me off tho was the nurse was asking the background questions, which she had everything from USC of my history, so of course it's all duplicate. But she's having to do it all herself. She completely got after me for my diet, because my feet were slightly swollen. (they swell fast if I don't stick to my low sodium). But she's just all going on and on. And I just wanted to say really?? You really don't think I understand how this fucking works. Dumb bitch! She tells me that the Dr is going to have a fit when he sees me. And then the last part was I told her about an Eval I had to have back in LA and she's like cuz of why. I said because of my ED. Which she's like you didn't say anything abou that! You need to tell me everything. Well you know what you didn't bother asking either, and I just simply was answering your questions about health wasn't trying to decive her or not tell her. Why would I tell everyone out at USC and they have it documented to then lie to this dumb nurse.
So here I am now pissed off and ready to fight. And all I can think is if that Dr. even dares to lecture me I probably will go off. Like if he addresses it fine and I'll be okay but if he came in like how she was saying I was going to have a FIT! Luckily for me and him, he didn't. He actually came in and was like I talked with Dr. Donovan in LA and know all about you. He wanted to switch up some medicines which he thinks will be better in the long run. And he also said that we can controll the AIH with medicine and I wouldn't need to have a transplant but we would continue to go with placing me on the list. I was super excited. One that he knew what the hell was going on, he was very direct, and he didn't even mention about my diet or anything :P, and the fact that he wanted to change up meds because that will help with things as well. Well as long as my body takes it.. so Fingers Crossed.
So that's my update. Pretty positive I thought. I'm happy with it:) Well as long as I lose weight, then I'll definetly be happy.
Wednesday, March 27, 2013
Getting on the List
So finally USC got in touch with my Dr. and I and we started the process of getting placed on the transplant list. I first went out to LA in the beginning of March and met up with the Hepatologist.
He's nice, and it was good to have that coming out of the appt with him. He did say that I didn't look as bad as what he thought he would see because of my charts that were sent over. So that kinda made me feel good. Like things were actually looking up. He did say that my levels were good that I would not 'qualify' for being placed on the Transplant list. However, because I'm only 32 he didn't want to take chances since I am more prone to getting sick and therefore have the need for the transplant but not be able to receive it because they didn't continue to put me on the list.
We then went back out to L.A. two weeks later to meet the rest of the team that would perform the surgery and then just financial and social workers. I will have to make one more trip out there for an evaluation but other then that we should be able to get most of the testing done here in Vegas.
Out in LA this last time my results came back with a MELD score of 14. Which it goes from 6-40. But my surgeron said that a completely healthy person could have a score of 10. She did then say also that they wouldn't even think of performing the surgery until I was at least at an 18 if not 20. But since I do have the option of liver donors they were really pushing for that to happen because the list versus donors it's just outweighing the other in which ppl are dying without even getting close to the transplant.
With that tho, my last results were showing good improvements so it's looking like my prescriptions are going on the right track finally, so my cordinator did say that hopefully they would continue this way and perhaps things would heal themselves or I at least would stay at this place and not need the transplant. We'll see how things go tho.
Out there I met with the Social worker, and things are only going to be getting more and more interesting. I do know that they want me to see a Therapist again .. and it's not that .. well I just don't know. I feel like it's a waste of money almost. Nothing productive came from it this last time. Which could be my fault. It was nice to be able to talk to someone who didn't know me from boo and could give suggestions. Only probably is a lot of those suggestions I went with and in the long run I think that it kind of put me in a bad place.
It was just the fact that even tho I was upset at things that had happened I had a least pushed aside. Maybe didn't really deal with them, but they were out of my mind, and then having to do this 'projects' made it all come crashing back down and I really didn't like the way it was going.
That's my problem with thinking about it now. Because I'm supposed to cope with having my autoimmune and having to possibly have a transplant. And which right now when I think about it I am PISSED OFF!! Ya that whole why me comes into play in which you know it wasn't something you did, but it's just like I feel like I could easily name 10 ppl in which something like this should happen to .. I know that's horrible but it just pisses me off. To get fucked over once again. And to know that there's a chance that I won't be around for my kids. To laugh with them, eat meals together, talk about their days, push them when they need pushed, and teaching them how they are to treat others (specially their future wives). To watch them play their sports or just laugh with their friends. To know that I probably won't see my grandchildren. Ya I'm fucking pissed!
My social worker asked me about how I thought I was handling things or acting. And I said fake. I said I'm in pretend world. Denial.
And it just pisses me off to hear about ppls bills or finacial problems and here I'm already having thousands of dollars in bills pilling up and then to have to continue to pay for meds. and then if I do have the procedure. Ya I'm so worried that you can't make your payments on this but you can go shopping or go on a vacation or whatnot. It's like I just at times what to say Fuck off. Don't even think about telling me your problems right now.
It's harder then hell right now too to get everything done. Testing and future appts. Not only mine but the kids. Having practices, school work, and still trying to let them have their fun with friends, when more then half the time I don't feel like getting out of my jams or bed.
Last thing I'm going to say here, is that my mother-in-law stated that I have AIH because I chose my lifestyle. Lets get one thing straight. I was gentically born with AIH. It had nothing to do with who I fucked or slept with before my husband, the fact that I did smoke MJ (very little but I did) or that I drink alcohol. Pretty sure if those were the qualtifications for someone to get AIH there would have been a hell of a lot more ppl before me and it would have been made known to everyone. What a stupid fucking bitch! And she better watch herself cuz at this point I won't be holding back. I am D-O-N-E with that bullshit!
He's nice, and it was good to have that coming out of the appt with him. He did say that I didn't look as bad as what he thought he would see because of my charts that were sent over. So that kinda made me feel good. Like things were actually looking up. He did say that my levels were good that I would not 'qualify' for being placed on the Transplant list. However, because I'm only 32 he didn't want to take chances since I am more prone to getting sick and therefore have the need for the transplant but not be able to receive it because they didn't continue to put me on the list.
We then went back out to L.A. two weeks later to meet the rest of the team that would perform the surgery and then just financial and social workers. I will have to make one more trip out there for an evaluation but other then that we should be able to get most of the testing done here in Vegas.
Out in LA this last time my results came back with a MELD score of 14. Which it goes from 6-40. But my surgeron said that a completely healthy person could have a score of 10. She did then say also that they wouldn't even think of performing the surgery until I was at least at an 18 if not 20. But since I do have the option of liver donors they were really pushing for that to happen because the list versus donors it's just outweighing the other in which ppl are dying without even getting close to the transplant.
With that tho, my last results were showing good improvements so it's looking like my prescriptions are going on the right track finally, so my cordinator did say that hopefully they would continue this way and perhaps things would heal themselves or I at least would stay at this place and not need the transplant. We'll see how things go tho.
Out there I met with the Social worker, and things are only going to be getting more and more interesting. I do know that they want me to see a Therapist again .. and it's not that .. well I just don't know. I feel like it's a waste of money almost. Nothing productive came from it this last time. Which could be my fault. It was nice to be able to talk to someone who didn't know me from boo and could give suggestions. Only probably is a lot of those suggestions I went with and in the long run I think that it kind of put me in a bad place.
It was just the fact that even tho I was upset at things that had happened I had a least pushed aside. Maybe didn't really deal with them, but they were out of my mind, and then having to do this 'projects' made it all come crashing back down and I really didn't like the way it was going.
That's my problem with thinking about it now. Because I'm supposed to cope with having my autoimmune and having to possibly have a transplant. And which right now when I think about it I am PISSED OFF!! Ya that whole why me comes into play in which you know it wasn't something you did, but it's just like I feel like I could easily name 10 ppl in which something like this should happen to .. I know that's horrible but it just pisses me off. To get fucked over once again. And to know that there's a chance that I won't be around for my kids. To laugh with them, eat meals together, talk about their days, push them when they need pushed, and teaching them how they are to treat others (specially their future wives). To watch them play their sports or just laugh with their friends. To know that I probably won't see my grandchildren. Ya I'm fucking pissed!
My social worker asked me about how I thought I was handling things or acting. And I said fake. I said I'm in pretend world. Denial.
And it just pisses me off to hear about ppls bills or finacial problems and here I'm already having thousands of dollars in bills pilling up and then to have to continue to pay for meds. and then if I do have the procedure. Ya I'm so worried that you can't make your payments on this but you can go shopping or go on a vacation or whatnot. It's like I just at times what to say Fuck off. Don't even think about telling me your problems right now.
It's harder then hell right now too to get everything done. Testing and future appts. Not only mine but the kids. Having practices, school work, and still trying to let them have their fun with friends, when more then half the time I don't feel like getting out of my jams or bed.
Last thing I'm going to say here, is that my mother-in-law stated that I have AIH because I chose my lifestyle. Lets get one thing straight. I was gentically born with AIH. It had nothing to do with who I fucked or slept with before my husband, the fact that I did smoke MJ (very little but I did) or that I drink alcohol. Pretty sure if those were the qualtifications for someone to get AIH there would have been a hell of a lot more ppl before me and it would have been made known to everyone. What a stupid fucking bitch! And she better watch herself cuz at this point I won't be holding back. I am D-O-N-E with that bullshit!
Friday, March 1, 2013
UpDate
So finally USC got a hold of me and I'm scheduled for an appt on the 4th (Monday). All I'll be doing is meeting with the Hepatologist, I'm really not sure on what to expect either. It shall be interesting.
But from what I understand, I'll meet with them and they'll go thru my medical history and then decide whether or not to proceed onto Phase 2 of getting placed on the transplant list.
For another note, this week has been horrible for me on my eating habits. I've fallen back into eating whatever and not really caring. I can't do the Ed I used to so that's even more frustrating but it's also something I know that I'm doing to myself. It just sucks because every night I tell myself tomorrow I'll do it and I'll work hard, and then that day comes and I just don't give a crap or something gives me an excuss to just be the messed up person I am. I'm hoping that tomorrow I can stop this and make the change that I need to. That I really do want to make.
We'll see.
But from what I understand, I'll meet with them and they'll go thru my medical history and then decide whether or not to proceed onto Phase 2 of getting placed on the transplant list.
For another note, this week has been horrible for me on my eating habits. I've fallen back into eating whatever and not really caring. I can't do the Ed I used to so that's even more frustrating but it's also something I know that I'm doing to myself. It just sucks because every night I tell myself tomorrow I'll do it and I'll work hard, and then that day comes and I just don't give a crap or something gives me an excuss to just be the messed up person I am. I'm hoping that tomorrow I can stop this and make the change that I need to. That I really do want to make.
We'll see.
Saturday, February 23, 2013
Back to Normal ?? What is normal ??
So my dr. finally put me on a different script of my meds where it seems to be working and I'm losing the water weight, feeling somewhat better. Except for the episode of the flu that the kids brought home. Man did that suck!
Well, in about a month I lost 38 lbs. Mainly water weight. So I only have or had at least another 16lbs or so to go. Maybe. Meaning that I wasn't sure I were to ever be back to the weight that I was. But it was looking good. Now, not so much after the couple days I had because I have to resort back to my old ways, or at least old thoughts which doesn't have good results in my head or anywhere else for that fact.
38 lbs.. your saying I'm sure your like wow .. woah. but me and my head is going.. nope not enough yet. And even there what are you going to do once you get down. How you going to deal with it. trying to be healthy and keeping your levels normal and also be happy and content.
Happy and content. What is that. That's such a bullshit saying. Who is every happy and content?? If you know them please let me know so I can at least sit next to them and maybe it'll rub off a bit.. just a bit of it is all I need.
I'm in a hate phase right now with myself. So to say positive things, just doesn't seem reasonable. It actually feels awkward and stupid to even think of saying something positive about myself. But now if you want me to 'dog' on myself.. oh I have plenty for that. Never had any problems with that. Everyone else had so much to say that it made it easy.
To tomorrow. Tomorrow I go back on my diet and back to the way that I need to be. I do miss it right now, but I know once I'm there too I'll be wishing to eat the foods that I want to eat. And tomorrow I'm going to be pissed because of the weight gain. Like REALLY PISSED! So pray for me tonight.
Well, in about a month I lost 38 lbs. Mainly water weight. So I only have or had at least another 16lbs or so to go. Maybe. Meaning that I wasn't sure I were to ever be back to the weight that I was. But it was looking good. Now, not so much after the couple days I had because I have to resort back to my old ways, or at least old thoughts which doesn't have good results in my head or anywhere else for that fact.
38 lbs.. your saying I'm sure your like wow .. woah. but me and my head is going.. nope not enough yet. And even there what are you going to do once you get down. How you going to deal with it. trying to be healthy and keeping your levels normal and also be happy and content.
Happy and content. What is that. That's such a bullshit saying. Who is every happy and content?? If you know them please let me know so I can at least sit next to them and maybe it'll rub off a bit.. just a bit of it is all I need.
I'm in a hate phase right now with myself. So to say positive things, just doesn't seem reasonable. It actually feels awkward and stupid to even think of saying something positive about myself. But now if you want me to 'dog' on myself.. oh I have plenty for that. Never had any problems with that. Everyone else had so much to say that it made it easy.
To tomorrow. Tomorrow I go back on my diet and back to the way that I need to be. I do miss it right now, but I know once I'm there too I'll be wishing to eat the foods that I want to eat. And tomorrow I'm going to be pissed because of the weight gain. Like REALLY PISSED! So pray for me tonight.
Sunday, January 13, 2013
Back to the Hospital
So the other week I was just not feeling all to hot. Wasn't sure why but I was just exhausted and wanting to lay down all day. And it was just kind of hard because Tom's dad and step-mother were in town but I really wanted nothing to do with anyone. So I felt guilty like I was ignoring them when I really didn't know what was going on.
What ended up happening was that my Hemoglobin was down to a 4.4 Guess it's supposed to be around a 12, but mine is usually around 9 something anyways, but I ended up getting admitted into the hospital and getting 6 units of blood and 4 units of plasma. I was in there from Wednesday until Saturday. And still coming out with no results really and no answers. The only thing I know is that I will have to see a dr. to get my blood work about every 2 wks. And they can administrate the correct dosage of whatever it is I need for the most part right there and then. So money going out and me just continuing to be sick.
Well, to keep this post short. I'm still feeling as crappy as I did a week ago with no answers and I have a thousand and one things to do. I know I really have to get over that a yr ago my life was different and now I have to handle what I have now.. just hard most of times.
What ended up happening was that my Hemoglobin was down to a 4.4 Guess it's supposed to be around a 12, but mine is usually around 9 something anyways, but I ended up getting admitted into the hospital and getting 6 units of blood and 4 units of plasma. I was in there from Wednesday until Saturday. And still coming out with no results really and no answers. The only thing I know is that I will have to see a dr. to get my blood work about every 2 wks. And they can administrate the correct dosage of whatever it is I need for the most part right there and then. So money going out and me just continuing to be sick.
Well, to keep this post short. I'm still feeling as crappy as I did a week ago with no answers and I have a thousand and one things to do. I know I really have to get over that a yr ago my life was different and now I have to handle what I have now.. just hard most of times.
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