Another day almost over. I was up half the night last night but then I was able to get some sleep towards morning. I'm not sure why I have been having so much trouble sleeping. It does get really annoying though. Hoping for a better nights sleep tonight.
I decided last night that I would take a stool softener to see if that helped move things along better. The doctors have a liquid prescribed that I can either put through my J-tube or take orally. I thought I would just try to take it orally. I didn't realize this until after the fact, but you are supposed to dilute it in 6-8 ounces of water. I decided to just take a swig or two and be done with it. That was a bad mistake. I took one little sip, and I couldn't breathe. Literally, I couldn't breathe in or out. It was horrible. I was gasping away and when I started to be able to breathe the tiniest bit I was only able to breath in, I couldn't breathe out. I thought it must have just went down the wrong tube but then when I read the bottle I realized that it didn't. There is a warning to dilute the med or it can cause severe throat irritation. It literally took my breath away and I couldn't breathe for a good little while. Needless to say, it made me quite sick after that and I won't go into details there.
Today was an alright day. It could have been better but definitely could have been worse. Basically as long as I am alive I have to realize that things could be worse and to be thankful that I am alive. I would not pick to be where I am right now, but it is where God sees fit for me to be and I have to accept that. I may not like it, but in reality there is nothing I can do about it anyways so I might as well try to make the best of it. Easier said than done, but I need to try and find the positives in it.
Taking it one day at a time!!!
Saturday, February 26, 2011
Friday, February 25, 2011
Feelings for Friday
Can you believe we are already at the end of February. It seems like this year just started and we are soon to began the third month already. Where has the time gone?
Nothing exciting happened today. Just taking it easy and relaxing, since that's all I really feel like doing. I may have to drag myself out of the house tonight to get some errands ran and to pick some things up. I'm dreading it though just thinking about it, which is so unlike me. Usually I'm wanting to do anything to get out of the house for a little bit. I usually don't like being stuck at home with nothing to do.
No more doctors appointment now until my appointment at Temple in March.
Praying things work out at Temple. It get discouraging sometimes when you look back at when things started and where things are at today. Not much progress has been made when you actually think about it. There are really no new answers. I've heard plenty of maybe it's this, or maybe it's that, but the general consensus has always been the same. So hopefully Temple will be able to get things moving and get some definitive answers and treatments.
Taking it one day at a time and trusting in God that He sees the big picture!!!!
Nothing exciting happened today. Just taking it easy and relaxing, since that's all I really feel like doing. I may have to drag myself out of the house tonight to get some errands ran and to pick some things up. I'm dreading it though just thinking about it, which is so unlike me. Usually I'm wanting to do anything to get out of the house for a little bit. I usually don't like being stuck at home with nothing to do.
No more doctors appointment now until my appointment at Temple in March.
Praying things work out at Temple. It get discouraging sometimes when you look back at when things started and where things are at today. Not much progress has been made when you actually think about it. There are really no new answers. I've heard plenty of maybe it's this, or maybe it's that, but the general consensus has always been the same. So hopefully Temple will be able to get things moving and get some definitive answers and treatments.
Taking it one day at a time and trusting in God that He sees the big picture!!!!
Thursday, February 24, 2011
2/24/2011
Today's nutrition appointment went well. I felt it was not worth the hassle of even going. Basically he just looked at my vitals and glanced at me and said well everything looks like it should I don't need to see you again for a month. So than we just sat there in silence as he typed out his note about the visit. I guess you just have to have those appointment as long as you are on TPN. I have to go back now every month, so my next appointment is not until the end of March. So it looks like I will be on the TPN for at least another month or unless Temple wants to do something else in the meantime since I will be seeing them before my next nutrition appointment.
Home health visit went well. I really liked that nurse that came today. Since my mom had used to work for the agency that came I have known the nurse for a few years so it was nice having somebody come that I actually knew. She remembers from 5 years ago when I first started getting sick, so she knows what I have been going through and dealing with. She will be coming back on Monday to do my blood work.
I have been having horrible nights of not being able to sleep. I'm in bed now and if I start getting tired enough that I think I can sleep I'm going to take advantage of it even if it is early. At least I worked night shift so when I am up all night I at least can text or call friends from work which helps the nights go faster.
Taking it one day at a time!!!
Home health visit went well. I really liked that nurse that came today. Since my mom had used to work for the agency that came I have known the nurse for a few years so it was nice having somebody come that I actually knew. She remembers from 5 years ago when I first started getting sick, so she knows what I have been going through and dealing with. She will be coming back on Monday to do my blood work.
I have been having horrible nights of not being able to sleep. I'm in bed now and if I start getting tired enough that I think I can sleep I'm going to take advantage of it even if it is early. At least I worked night shift so when I am up all night I at least can text or call friends from work which helps the nights go faster.
Taking it one day at a time!!!
Wednesday, February 23, 2011
One of Those Days!
Today was one of those days, you know, a 'blah' kind of day. I haven't been sleeping well at night and I didn't feel like doing anything so I just relaxed and was able to catch up on a little of my sleep, I think. I had some things I could have done, maybe even needed to do, but I just didn't feel like doing them. I've just been plain wore out lately. So, that was my day for today. Nothing new or exciting to post about today.
Since I have not been working I fear that in the time away I will either lose some skills or just become rusty on how I functioned and performed as a nurse. So, I thought I would try something new to keep "up-to-date" on current medical issues and the such. I started reading current research articles and new medical news and so far I have found it quite interesting. I figure since I am not working right now to learn by experience, which I think is the best way to learn, that I would try and do the best I could to stay current and in the loop so to speak. So far, I am enjoying what I have been reading and learning.
Tomorrow will be a more interesting and tiring day. I have a 9:30am appointment at Geisinger with the GI nutrition doctor. Around 1:00pm home health nurse is stopping by to do vitals and my PICC dressing change. It may not sound like a busy day to most of you, but for me I will probably be really tired by the end of the day.
Since I have not been working I fear that in the time away I will either lose some skills or just become rusty on how I functioned and performed as a nurse. So, I thought I would try something new to keep "up-to-date" on current medical issues and the such. I started reading current research articles and new medical news and so far I have found it quite interesting. I figure since I am not working right now to learn by experience, which I think is the best way to learn, that I would try and do the best I could to stay current and in the loop so to speak. So far, I am enjoying what I have been reading and learning.
Tomorrow will be a more interesting and tiring day. I have a 9:30am appointment at Geisinger with the GI nutrition doctor. Around 1:00pm home health nurse is stopping by to do vitals and my PICC dressing change. It may not sound like a busy day to most of you, but for me I will probably be really tired by the end of the day.
Tuesday, February 22, 2011
2/22/2011
Today I had a GI doctor appointment. It was just a follow-up from my recent hospitalizations. I have never really cared for this GI doctor and after today, especially right now, I still don't care for him.
Good news is that the biopsy reports came back fine as far as we can tell.
Nothing else new to really report except my frustrations with this particular doctor. He hears what you tell him but he either doesn't understand or he actually isn't listening. He seems very skeptical of everything you are telling him about what is going on and your symptoms and what they told you your tests showed while in the hospital. Then he gets in your charts and ends up reading what you just told him aloud from the actual test results. So annoying. It's like since he can't figure it out it must not be really happening or true. It almost seems like he is stuck in a box and so we have to keep trying the same medications over and over again and the same everything that is in the box 20 times with the same results. If they didn't work the first or even the second time maybe it is time to look outside of the box. At least he did admit he wasn't following me as closely as he should have been. You can't keep track of how somebody is doing with their problems unless you see them and schedule return appointments. So don't wonder how things can get so bad if you haven't been seeing them at all. That's just a couple of the things that really got to me today when I saw him and built up from some past visits with him. I could go on yet for awhile but will leave it at this. Maybe another time and another post. We'll see.
I haven't been sleeping well at all and after the long day I had today I think I'm soon calling it a night. I get really wore out by just going to the doctors.
Looks like I have another appointment on Thursday with the GI/Nutrition doctors that were following me on the TPN in the hospital. Also, Home health is also coming on Thursday to do my PICC dressing change.
Taking it one day at a time!!!
Good news is that the biopsy reports came back fine as far as we can tell.
Nothing else new to really report except my frustrations with this particular doctor. He hears what you tell him but he either doesn't understand or he actually isn't listening. He seems very skeptical of everything you are telling him about what is going on and your symptoms and what they told you your tests showed while in the hospital. Then he gets in your charts and ends up reading what you just told him aloud from the actual test results. So annoying. It's like since he can't figure it out it must not be really happening or true. It almost seems like he is stuck in a box and so we have to keep trying the same medications over and over again and the same everything that is in the box 20 times with the same results. If they didn't work the first or even the second time maybe it is time to look outside of the box. At least he did admit he wasn't following me as closely as he should have been. You can't keep track of how somebody is doing with their problems unless you see them and schedule return appointments. So don't wonder how things can get so bad if you haven't been seeing them at all. That's just a couple of the things that really got to me today when I saw him and built up from some past visits with him. I could go on yet for awhile but will leave it at this. Maybe another time and another post. We'll see.
I haven't been sleeping well at all and after the long day I had today I think I'm soon calling it a night. I get really wore out by just going to the doctors.
Looks like I have another appointment on Thursday with the GI/Nutrition doctors that were following me on the TPN in the hospital. Also, Home health is also coming on Thursday to do my PICC dressing change.
Taking it one day at a time!!!
Monday, February 21, 2011
Let Me Vent!!!
This is a trial run of posts that I will call "Let me Vent" . These post are where I will vent once and awhile about things that are really bothering me. It can be about anything and please know that these posts are not pointed at any individuals specifically. So, here goes the first one!
Upon discharge from the hospital everybody assumes you are doing better. Why wouldn't they? I totally get it. I'm sure I would be assuming the same thing because that is how things work. You get sick, go to hospital, start getting better, go home. That's how things work. Well, not so much the case in my situation. I was discharged home because there was nothing else they could do for me, and what they were doing I'm able to do at home. So there is no point keeping me in the hospital when they can't do anything more for me. So therefore I was discharged home to be followed by nurses until I can get to Temple. To keep hanging in there till I get to Temple to see if there is anything they can do there. They offer different tests and surgeries that may be available. What they are doing for me right now is not necessarily going to help me get better or feel better, it is just to keep me from getting any worse. At this point I wouldn't be able to handle getting worse because I'm already not good.
I guess the point that is frustrating to me is that people assume things are better or getting better when they're not and I don't have the heart to tell them that things actually aren't really any better. (I'm such a sucker.) Instead I just either agree with them or answer some generic response that can be taken however they want it to!
Well now that this is off my mind, I'm going to bed. Good night all!!!
Upon discharge from the hospital everybody assumes you are doing better. Why wouldn't they? I totally get it. I'm sure I would be assuming the same thing because that is how things work. You get sick, go to hospital, start getting better, go home. That's how things work. Well, not so much the case in my situation. I was discharged home because there was nothing else they could do for me, and what they were doing I'm able to do at home. So there is no point keeping me in the hospital when they can't do anything more for me. So therefore I was discharged home to be followed by nurses until I can get to Temple. To keep hanging in there till I get to Temple to see if there is anything they can do there. They offer different tests and surgeries that may be available. What they are doing for me right now is not necessarily going to help me get better or feel better, it is just to keep me from getting any worse. At this point I wouldn't be able to handle getting worse because I'm already not good.
I guess the point that is frustrating to me is that people assume things are better or getting better when they're not and I don't have the heart to tell them that things actually aren't really any better. (I'm such a sucker.) Instead I just either agree with them or answer some generic response that can be taken however they want it to!
Well now that this is off my mind, I'm going to bed. Good night all!!!
2/21/2011
My family doctor appointment is over. It went fine. I basically just updated them briefly on what all had happened this last hospitalization and that I am now home with TPN and have nurses coming in. No more appointments with them are scheduled. She realizes that I'm really weak and not feeling good so she doesn't want to make me come in just for follow-ups. She wants me to call if I want/need to be seen. Other than that she knows I will be having lots of appointments coming up and knows it will get very overwhelming and she doesn't want to add to it anymore.
I did receive a call from the pharmacy that reviews my labs to see if the "ingredients" in the TPN need adjusted. I guess they may have been a little off so they are going to be making some adjustments. I should be getting a delivery of all my supplies tonight yet with the updated TPN.
A case manager from Geisinger called to check up and see how things are going. She will be checking up on some of my follow-ups that I think got lost in the discharge process. They will be calling every Monday morning for 4 weeks to keep checking up on me and make sure I am doing alright.
Update: Case Manager just called back and I now have an appointment tomorrow with GI. It was scheduled for the 28th from the first admission but when discharged this time they had wanted me to be seen in 3 days. I hadn't heard anything so I just figured I would still be going on the 28th even though it was over a week away. Well, I guess she looked into it and so now I go tomorrow.
Taking it one day at a time!!!
I did receive a call from the pharmacy that reviews my labs to see if the "ingredients" in the TPN need adjusted. I guess they may have been a little off so they are going to be making some adjustments. I should be getting a delivery of all my supplies tonight yet with the updated TPN.
A case manager from Geisinger called to check up and see how things are going. She will be checking up on some of my follow-ups that I think got lost in the discharge process. They will be calling every Monday morning for 4 weeks to keep checking up on me and make sure I am doing alright.
Update: Case Manager just called back and I now have an appointment tomorrow with GI. It was scheduled for the 28th from the first admission but when discharged this time they had wanted me to be seen in 3 days. I hadn't heard anything so I just figured I would still be going on the 28th even though it was over a week away. Well, I guess she looked into it and so now I go tomorrow.
Taking it one day at a time!!!
Beautiful Morning!!!
I woke up to a beautiful morning. We received a lot of snow overnight and it is just beautiful. I took a couple of quick snapshots just from the house because it was so pretty. I'm hoping I can maybe take some more pictures today when I go to the doctors later this morning.
Sunday, February 20, 2011
2/20/2011
Home Health nurse came today around 10:00am. She was really nice, we had a good time together. She is actually is a clinical instructor where I went to nursing school. So we had some things in common to chat about.
One things I've noticed is that everyplace does things a little different in regards to mediport access. I know how Geisinger does theirs so I just figured that was they way it had to be done. Apparently that is not the case. I'm not sure if the nurse I had today had ever even accessed a mediport before. It was a learning experience for both of us. I was able to tell her how I've watched it be done a Geisinger and then she followed my lead. One institution may do things one way while the other may do things another way. At least she was a nurse that didn't mind me telling her how it was done and how to do it, but I think most of that was because she really truly didn't know. All in all though, it went well and she was able to get the blood drawn. Hopefully the results will be good and I won't get a call saying otherwise. She wasn't sure what day the nurses were coming next. So I guess it will be a surprise.
I'm probably going to spend the afternoon resting and working on my pictures. I think I am going to try and get them organized. I also received a coupon from when I bought my new camera to get a photo book. So I may work on getting that put together so I can get that ordered this week. Maybe I will find some pictures I had forgot about or slipped through the cracks that I will feel like posting on here later today.
Taking it one day at a time!!
One things I've noticed is that everyplace does things a little different in regards to mediport access. I know how Geisinger does theirs so I just figured that was they way it had to be done. Apparently that is not the case. I'm not sure if the nurse I had today had ever even accessed a mediport before. It was a learning experience for both of us. I was able to tell her how I've watched it be done a Geisinger and then she followed my lead. One institution may do things one way while the other may do things another way. At least she was a nurse that didn't mind me telling her how it was done and how to do it, but I think most of that was because she really truly didn't know. All in all though, it went well and she was able to get the blood drawn. Hopefully the results will be good and I won't get a call saying otherwise. She wasn't sure what day the nurses were coming next. So I guess it will be a surprise.
I'm probably going to spend the afternoon resting and working on my pictures. I think I am going to try and get them organized. I also received a coupon from when I bought my new camera to get a photo book. So I may work on getting that put together so I can get that ordered this week. Maybe I will find some pictures I had forgot about or slipped through the cracks that I will feel like posting on here later today.
Taking it one day at a time!!
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