I learned today that my nurse in Denver, Sondra, is leaving the hospital. Her last day is tomorrow. My "other" nurse there, Carrie, left last week. I have new nurses until they find a permanent replacement. It really makes me wonder if there is something going on. I love my Dr... is he leaving the hospital? Is he the problem?
Mom came home tonight, and the first thing she said when she saw me was "You look thin". Well, we weighed myself, and I am at 126. That is a 10 pound loss in less than 2 weeks.
I am tired today. I hung out with Carson, made dinner, and I am done. So... good night.
Wednesday, September 30, 2009
Sunday, September 27, 2009
A Lot
I am so sorry to not have written in so long! I got back from Rapid City and didn't have any internet!!! Turns out that I just needed to reset my modem. Why didn't I think of that?!?
So I got back into Junction Monday evening. Dad left that same evening for home, sleeping in Cheyenne. I did really well through the whole trip. I didn't really start hurting until it started storming on the way from Ft Co to here. And that hurt like hell.
Starting the Tuesday I was up there, I have had yucky yellow drainage. I talked to my nurse in Denver, and she wanted me to go to my primary. Well... he took one look and said go to Denver. That he couldn't help me with it. Needless to say, I was way stressed! Well, after talking to several different nurses I was sent to the emergency room (this was this last Tuesday) to get a culture. Those in the mean time have come up negative (meaning it isn't an infection). And my nurse had already figured that was the case. WELL, I was told it sounded like because of my lupus, my immune system has gone berserk and has decided to reject the catheter. My rheumy said that my lupus has been in remission for more than the last year and that if my body is rejecting the tubing I just have to live with it.
I felt like I had just been dumped by the two people who were close enough to help me. I am angry, depressed, and stressed. What do I do now. My nurse said that my Dr in Denver doesn't know. It is dangerous to leave it in because it may become infected or I may grow an abscess because of the rejection and drainage. I am trying so hard not to push people away. I just want to snuggle up with my mom and watch tv. I don't want to do anything, go anywhere, or see anyone. And I know that isn't healthy.
I also now must start looking for a doctor in the Grand Valley who is accepting patients and who is willing to work with multiple doctors in Denver. There are no other rheumys here in this area. I will have to call one at the Univ of Colo Hospital. So there is yet another doctor too far away to help me.
On a good note... the dr who treated me in the ER Tues was awesome!! Julie Mills. I will be asking for her.
So I got back into Junction Monday evening. Dad left that same evening for home, sleeping in Cheyenne. I did really well through the whole trip. I didn't really start hurting until it started storming on the way from Ft Co to here. And that hurt like hell.
Starting the Tuesday I was up there, I have had yucky yellow drainage. I talked to my nurse in Denver, and she wanted me to go to my primary. Well... he took one look and said go to Denver. That he couldn't help me with it. Needless to say, I was way stressed! Well, after talking to several different nurses I was sent to the emergency room (this was this last Tuesday) to get a culture. Those in the mean time have come up negative (meaning it isn't an infection). And my nurse had already figured that was the case. WELL, I was told it sounded like because of my lupus, my immune system has gone berserk and has decided to reject the catheter. My rheumy said that my lupus has been in remission for more than the last year and that if my body is rejecting the tubing I just have to live with it.
I felt like I had just been dumped by the two people who were close enough to help me. I am angry, depressed, and stressed. What do I do now. My nurse said that my Dr in Denver doesn't know. It is dangerous to leave it in because it may become infected or I may grow an abscess because of the rejection and drainage. I am trying so hard not to push people away. I just want to snuggle up with my mom and watch tv. I don't want to do anything, go anywhere, or see anyone. And I know that isn't healthy.
I also now must start looking for a doctor in the Grand Valley who is accepting patients and who is willing to work with multiple doctors in Denver. There are no other rheumys here in this area. I will have to call one at the Univ of Colo Hospital. So there is yet another doctor too far away to help me.
On a good note... the dr who treated me in the ER Tues was awesome!! Julie Mills. I will be asking for her.
Saturday, September 19, 2009
Off to See the Wizard!
Today we head back home. Tonight we will stop and stay with my brother, and we will stay again tomorrow night and then Monday I will be back in Junction! I have had a really good time, but now it is time to go home.
Thursday Dad and I went to lunch with Grandma Cordes, and it was great! Then we went to a few gift shops and fixed dinner. Dad went bowling (I couldn't go because they still have smoking in buildings here) and Ronda and I went to see my stepbrother's family again. The kids are so cute! Yesterday Dad and I went to Art Alley and I took some pictures. It is gorgeous! It is an alley between 6th and 7th streets that the kids can go graffiti, with few restrictions. Wow! I can't wait to show the pictures. It is always changing, as the kids go paint over the old stuff. Then last night my aunt and uncle came over with Grandma for dinner.
This morning we are meeting the family for breakfast before we head out. And we should hit Ft Co by 6!
Thursday Dad and I went to lunch with Grandma Cordes, and it was great! Then we went to a few gift shops and fixed dinner. Dad went bowling (I couldn't go because they still have smoking in buildings here) and Ronda and I went to see my stepbrother's family again. The kids are so cute! Yesterday Dad and I went to Art Alley and I took some pictures. It is gorgeous! It is an alley between 6th and 7th streets that the kids can go graffiti, with few restrictions. Wow! I can't wait to show the pictures. It is always changing, as the kids go paint over the old stuff. Then last night my aunt and uncle came over with Grandma for dinner.
This morning we are meeting the family for breakfast before we head out. And we should hit Ft Co by 6!
Thursday, September 17, 2009
Deer and Icecream
I have really been enjoying my trip! It has been kind of uneventful, but not too much so. The other day, Tuesday it was, I was just looking out the window to the back yard. I saw 2 deer, does I am sure! Right at the house, eating in the garden bed! It was wonderful!! Then I went to visit my aunt, uncle and cousins. That was a wonderful time too! We just chilled, watched the youngest show off for me.
Yesterday, Dad and I played on the Wii, it was fun! Looked through pictures and chatted. We fixed dinner. Afterwords, all of us went to my step brother's house and met his little ones, who were way into showing off for their great grandma! Then it was time for dessert, so we met a bunch of family at Armadillos for ice cream! Then my uncle took me for a ride in his Miata. It is a sweet car!
I am still doing well. Doing my very best not to over do it! But my sleeping is getting worse as each day progresses. I slept so well that first night here!! I am tired today. And I keep yawning.
I am not sure what we are going to do today, so I can't tell you yet!
OH YEAH!! I forgot. Mom already knows this, but others of you may not. Mom has the flu, Dan had the flu, and my boyfriend had the flu! So see!! I was right to come out here! Missed all that! (hopefully) ;)
Yesterday, Dad and I played on the Wii, it was fun! Looked through pictures and chatted. We fixed dinner. Afterwords, all of us went to my step brother's house and met his little ones, who were way into showing off for their great grandma! Then it was time for dessert, so we met a bunch of family at Armadillos for ice cream! Then my uncle took me for a ride in his Miata. It is a sweet car!
I am still doing well. Doing my very best not to over do it! But my sleeping is getting worse as each day progresses. I slept so well that first night here!! I am tired today. And I keep yawning.
I am not sure what we are going to do today, so I can't tell you yet!
OH YEAH!! I forgot. Mom already knows this, but others of you may not. Mom has the flu, Dan had the flu, and my boyfriend had the flu! So see!! I was right to come out here! Missed all that! (hopefully) ;)
Tuesday, September 15, 2009
Visiting
So I am now in South Dakota, visiting my Dad!! The trip up here we spread out, and rested in the middle. I feel pretty good! A little stiff, but nothing too bad. Got sick on the way from Junction to Ft Collins.
Just visiting family here, and chilling at the house. Nothing too much. We are going now... so I will post more later.
Just visiting family here, and chilling at the house. Nothing too much. We are going now... so I will post more later.
Tuesday, September 8, 2009
Yep, She's Right
Yes, Anna is correct; I was supposed to post a new blog to update everyone on her condition. I failed.
From a parent stand point this disease sucks big time. By the time our children are 26 they are supposed to have a life of their own, barely having time to talk when you call them. You are supposed to go to their home for the holiday's and be imerged in your own pointless hobbies. But...
Anna lives with me, I worry about her 24 hours a day, I check on her every morning before I leave the house, I check on her before I give Dan a hello kiss at the end of my work day, if I don't receive a call from her atleast once a day I worry sick, I miss her company if she is in her room playing on the computer in the evening instead of sitting on the couch with me.
I want to go to the mall with her, walk around the neighborhood with her, play bingo with her, hear about the awesome things she did or saw or learned today. Instead I stroke her hair, kiss her forhead, ask her how she is feeling, and what she has been doing.
Last night I told her I still hold faith that she has PH for a reason. I don't know if it to help her, me, her doctor's and nurses, or some unknown person to us. But of all the aweful things she has been through, they are good.
Last week when we were in the post op recovery area her nurse, Sondra came to see her. First thing she did was give Anna a hug. Then her doctor, Todd Bull came to see her and the first thing he did was give her a hug. This is what medical care is supposed to be for everyone. All of us should have a relationship with our medical team like Anna does. And it doesn't stop with her Denver doctor's; her doctor's here in GJ are the same-the first thing Dr. Faber does when he walks into the exam room is give her a hug. She may be a challenge to Dr. Terry, but he love's seeing her each time. How many of us can say that about our doctor(s)?
South Dakota??? No I don't think it is a wise thing for her to do. I understand her desire and felt need, I also understand the physical condition she will be in when she returns to me. She will be weak, exhausted, ill, and in pain. Is it worth it? To me...NO. To her...maybe. But I will be here to help her recover, gain her strength, and work through the pain.
I will be here......
I LOVE YOU ANNA!!
Momma
xxoo
From a parent stand point this disease sucks big time. By the time our children are 26 they are supposed to have a life of their own, barely having time to talk when you call them. You are supposed to go to their home for the holiday's and be imerged in your own pointless hobbies. But...
Anna lives with me, I worry about her 24 hours a day, I check on her every morning before I leave the house, I check on her before I give Dan a hello kiss at the end of my work day, if I don't receive a call from her atleast once a day I worry sick, I miss her company if she is in her room playing on the computer in the evening instead of sitting on the couch with me.
I want to go to the mall with her, walk around the neighborhood with her, play bingo with her, hear about the awesome things she did or saw or learned today. Instead I stroke her hair, kiss her forhead, ask her how she is feeling, and what she has been doing.
Last night I told her I still hold faith that she has PH for a reason. I don't know if it to help her, me, her doctor's and nurses, or some unknown person to us. But of all the aweful things she has been through, they are good.
Last week when we were in the post op recovery area her nurse, Sondra came to see her. First thing she did was give Anna a hug. Then her doctor, Todd Bull came to see her and the first thing he did was give her a hug. This is what medical care is supposed to be for everyone. All of us should have a relationship with our medical team like Anna does. And it doesn't stop with her Denver doctor's; her doctor's here in GJ are the same-the first thing Dr. Faber does when he walks into the exam room is give her a hug. She may be a challenge to Dr. Terry, but he love's seeing her each time. How many of us can say that about our doctor(s)?
South Dakota??? No I don't think it is a wise thing for her to do. I understand her desire and felt need, I also understand the physical condition she will be in when she returns to me. She will be weak, exhausted, ill, and in pain. Is it worth it? To me...NO. To her...maybe. But I will be here to help her recover, gain her strength, and work through the pain.
I will be here......
I LOVE YOU ANNA!!
Momma
xxoo
Monday, September 7, 2009
So Sorry!
Mom was suppose to post for me last week, but didn't do it!
The surgery went well. Afterwords I was told that I looked great! That is nice! Well, talked to the doctor and my nurses before getting out of there. It sounds like we wouldn't have had to do this if it wasn't for my allergy to all antibiotics. Hahaha!! So they want me to see an allergist here and see if I am truly allergic, or if I am just going to have to live with the painful side effects of these drugs.
We left to come home, Mom and Dan in one car, and Ryan and I in another. I got so sick. We had to stop in Downiville. We made it home, but I was miserable. That night home I threw up again, and again Wednesday. We are not sure what it was, but safe to say it wasn't the anesthesia. I think I got the flu. The surgery weakened my immune system enough that it came through right after the procedure. After being sick for 2 days, I got a lupus flare that hasn't yet left completely. I have been in pretty intense pain. Saturday was the first day I got dressed!!
I am going to South Dakota to visit my family next week! Dad is coming on Friday, and we will leave Saturday. We have it set up so that I get oxygen there, and I have doctors lined up if there are any problems. I have talked to my nurse and they are all fine with it. My mom, however, is not.
The surgery went well. Afterwords I was told that I looked great! That is nice! Well, talked to the doctor and my nurses before getting out of there. It sounds like we wouldn't have had to do this if it wasn't for my allergy to all antibiotics. Hahaha!! So they want me to see an allergist here and see if I am truly allergic, or if I am just going to have to live with the painful side effects of these drugs.
We left to come home, Mom and Dan in one car, and Ryan and I in another. I got so sick. We had to stop in Downiville. We made it home, but I was miserable. That night home I threw up again, and again Wednesday. We are not sure what it was, but safe to say it wasn't the anesthesia. I think I got the flu. The surgery weakened my immune system enough that it came through right after the procedure. After being sick for 2 days, I got a lupus flare that hasn't yet left completely. I have been in pretty intense pain. Saturday was the first day I got dressed!!
I am going to South Dakota to visit my family next week! Dad is coming on Friday, and we will leave Saturday. We have it set up so that I get oxygen there, and I have doctors lined up if there are any problems. I have talked to my nurse and they are all fine with it. My mom, however, is not.
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