Appointment update for 5/19/11

I had an appointment Thursday morning with my primary GI doctor at Geisinger. Overall, it went fairly well. I think I figured out part of why I have trouble with him. It is how he comes into the room and greets me and his attitude. He immediately gets me on the defensive, so then I feel like I have to fight to just try and tell him how things are going. He does it the same way everytime too. I was able to get past that and then things seemed to go alright then.

 

They are increasing my TPN. They were letting me do every other day, but now that I am back to work I must be burning more calories so I had lost some weight. Plus, I wasn't able to get the full 14 hours in on the days I did work. So now I will be doing the TPN 5 days a week with 2 free days, but they also lowered the time and the volume. Instead of doing 2,000mls over 14 hours, I will be doing 1,500mls over 10 hours. I shouldn't have any trouble getting the full 10 hours in since I am only working 8 hours shifts. So I guess we will see how that goes.

 

He also changed my G-tube at the appointment. It had last been changed in December and it recently started draining quite a bit more than normal and it had a foul smelling odor to it. Well, he informed me today that the tubes needed changed every 3 months. I would think they would be keeping track of that and have me schedule appointments to be getting my tubes changed, but I guess not. My J-tube should have been done also, but he didn't even mention that. That should have been changed in April.

 

He did ask how things are going with Temple. So I explained that nothing has been scheduled or done yet. At the end then he said to contact him and he would try giving them a call if we REALLY needed him too. I would think that he should be already since it's been 3 months, but he did not seem to be in a hurry or volunteer to do it now. I guess he thinks we should give them a little more time on there own.

 

We did receive another email from Temple and it looks like we are getting closer to getting the first test/procedure scheduled. I'm hoping (not going to hold my breath though)!!!

 

I'm on a long stretch at work right now, I'm on day 4/5. So only 1 more night and I will have 2 days off.

 

Hoping to maybe get out on Saturday and go fishing with my dad. It's has been a long time since I have been fishing. I used to love to go fishing and would do it quite frequently, but with going to college and than working nights I haven't done it much. Maybe I will try and take a camera along and see if I can get any nice pictures.

 

It has been really dreary here lately, in weather and in spirit at times. Hoping that the sun soon breaks through and warms and cheers things up.

 

Taking it one day at a time!!!

No Phone Calls (yet)!!!

Hope you haven't been holding your breath hoping I would get that phone call. Temple has not called yet. So they will be getting another email from us....

I have a doctor appointment in the morning tomorrow. Hopefully I will be able to update tomorrow with how that appointment went.

I'm just a tad nervous because its with the doctor that always seems to get me quite frustrated. Hopefully that won't be the case tomorrow.

Taking it one day at a time!!!

Quick Update - 5/16/2011

Keep your fingers crossed, but I think we might soon be making progress with Temple. [insert a happy dance here] I am supposed to be getting a call from them by 10:00am tomorrow with information about the test they want to get done first. Hopefully we can get this test scheduled and get the ball rolling for the other tests and procedures.

In other news, I have a GI appointment at Geisinger on Thursday and then another appointment next Wednesday with GI/Nutrition at Geisinger. Talked with nutrition a little this morning when I had to go in for my PICC dressing change and due to me going back to work they are going to have to increase/adjust my TPN. They will be discussing it with me at the appointments since I have lost weight in the weeks since I have started back to work.

Even though I don't feel good and some nights don't think I can make it through work, I'm just glad to be back and feel like I have a purpose in life!!!! I feel like that somehow I might be able to make a difference in somebody's life!!

Taking it one day at a time!!!

Back to Work!!! (Long post)

Wow, it's been a long time since I last posted!!!

I had an appointment last week and I was so fed up with everything that I decided at the appointment I was going to tell them that I'm was quitting the TPN and going back to work. I just was so tired of sitting around and not feeling productive. Since things haven't really been improving over the last couple weeks/months I didn't just want to keep on going like that for weeks/months to come. There was no end in sight and I couldn't just keep going like that.  Well, things didn't go quite like I had though or planned out in my head. Well, they wouldn't let me quit the TPN. I won't be coming off of it until they see me gaining more weight because as of now I am maintaining on some days and losing on some days, but not really gaining any. They haven't even mentioned about coming off of it anytime soon and I only see the TPN nutrition doctors once a month.  Those doctors didn't seem to keen on me even going back to work, but I had just had an appointment with my family doctor and she was willing to let me try going back to work when I wanted. So I called her and got the note. She made sure to let me know though, that she would write me off again if I started having trouble or anything.

While I was at my nutrition appointment they ordered blood work to be drawn and that resulted in me spending the whole day at Geisinger. First, my mediport didn't have a blood return. So they had to send me back up to the GI clinic and get some medicine (TPA) ordered to put in the line to see if that would fix it. Once the TPA is in, it has to be in there for 1 hour. They also checked my PICC and that didn't have a blood return either. So they had to put TPA in that also.

While I was waiting for the hour, I went to the floor that I work on to say Hi to everybody and talked to my boss. I discussed with her that I really needed to get back to work but as long as I was  on the TPN and still had my PICC in that I would have a 5lb weight restriction. Plus I needed so see if they even would let me work with a PICC in. Well, the boss was willing to let me try it and since I work on such a great floor, everybody was willing to help me out. I told her that I would rather try working on the floor before I took the other position I had interviewed for. If once I knew I couldn't work on the floor than I would have gladly taken the other position if offered to me. She seemed glad to have me try coming back and working on that floor. I told her that I was willing to start that night.

Now that the TPA had sat for 1 hour I went back to have it checked. The PICC worked right away, but the mediport still didn't. So they put more TPA in the mediport and had me wait another hour. After that hour my mediport still didn't work. They wanted to order a chest x-ray to check placement but it was so late in the day that there wasn't a doctor that could write the order. So they decided to have me stop by after work in the morning and get the x-ray done then. Since they weren't able to get my mediport working that meant they weren't able to draw my labs, so they sent me back down to the lab to see if they could stick me for it. That ended up being around another hour til they were finally able to get some blood. So I didn't get out of there until around 5pm and my appointment had been at 11am.

I went home and tried to take a nap and then I went in to work for 11pm. That is what has been keeping me so busy. It does a pretty good job of wiping me out and I am usually ready to drop right into bed when I get home so that has been why there have been no updates in awhile.

I am glad to be back to work even though I still may not feel the greatest, I feel like I have purpose and it helps me not to focus on my problems. I love taking care of others and trying to help them through their hard times.

Still no word from Temple. Mom had left early from work a couple days and tried calling them herself and trying to get things moving, but she wasn't able to get anywhere either.

I think that is about all the updates. I'm heading for a nap since I have to go into work tonight. I work the next four nights and then have off one day and then go back for four more. Should be interesting. I'm sure I will be quite tuckered out but I'm going to do my best to get it done and hang in there!!!

Taking it one day at a time!!!

4/24/2011 - Easter Sunday

I made it out to church for 2 of the 3 services today. We had a special sunrise service at 6:00am that I didn't make it out to, but was able to get out to the regular services.

I enjoy going to church on Easter Sunday and looking at all the kids in their new Easter outfits. I took my camera to try and take some pictures, but didn't get too many. I did get a cute picture of a twin that was there - she is 4 months old.

I really missed seeing my nephews today. I would have loved to try and get pictures of them in their Easter outfits if they were here. I like seeing them all dressed up looking sharp. 

5 Things I Enjoy Most!!!

1) My Dog - Lucky

2) Family (Nephews)

3) Photography

4) Babies

5) Sunrises/Sunsets

You Are.....

You are the sunshine in the rain

You are the joy in the sorrow

You are the strength in the weakness

You are the peace in the madness

You are the courage in the fears

You are the solace from the hurting

You are the refuge from the storm

You are the relief through the torment

You are the support through the tears

You are the comfort through the pain

You are the rest for the weary
You are the hope for the tomorrow
You are the cure for the ailing
You are the encouragement for the depressed
You are the remedy for the soul

No Steps Forward!!!!

I called the insurance company today to see if they could tell me anything. The lady I spoke with hadn't received any paperwork asking for approval or anything. She said that there shouldn't have to be any since Temple was participating. I asked her if she could call them and tell Temple that since they seemingly are waiting on the insurance. She told me she didn't know where to call, but asked me to call Temple and get the procedure codes for what they want to do. Then call her back and she would see if they did need approval first. I still hadn't heard back from Temple when I called them on Friday and I couldn't reach anybody today either, so I just left another message.

The saying usually goes - one step forward, two steps back. well this time it doesn't even seem like we are taking any steps forward. I'm thinking somebody forgot how to walk :)

Home health nurse coming again in the morning for dressing change. I was also to the doctor on Monday and they ordered some more blood work so I need to get that done sometime this week. I may get that done tomorrow at Geisinger.

I still haven't heard anything regarding the job interview I had last Monday. I'm still hoping, but everyday that goes by and I don't hear anything my hopes go down. If I don't hear from them I'm thinking about looking to see if I can find anything else that would work with all my restrictions and such. I was hoping to get back to work with at least one week left on my FMLA, but that isn't looking too promising. I wanted at least a little time left so that when I started in the new department if I had to take off for any reason I would still have some time left. If I use all my FMLA I don't know what they will use for my doctor appointment and such since I will have no time whatsoever.

Taking it one day at a time!!!

It Will Be Worth It All!!!

No matter what we go through in this life, how hard and dark it might seem - It will be worth it all to make it safely to the other side. Everything in this life is worth it all to just make it to heaven and see Jesus.

I often lose sight of the end goal when problems in my life are right in front of me and that is all I can see. I go through life looking straight ahead as far as I can, but when problems in my life are so big I can't see very far ahead. I look at my feet and I can't see to even take the next step. It's so dark and I wonder if there is even ground underneath the next step. That is when I need to realize I shouldn't even be looking down or straight ahead but I need to look up because that is where I will find the help, the strength and wisdom I need to go on. I need to get my focus off my problems and focus on the goal, which is Jesus. Maybe God puts big huge problems right in front of us to remind us where we need to be looking - up!!! We need to look up to Him and trust him that there is ground underneath our next step and we just need to have faith in him.

I need to look at this trial as a stepping stone and see what growth and benefits I can get from it. I don't need to look at it as a valley but as something to build me up. Not looking at it as, am I ever going to get better, but look at it as what can I take from this. How can I use what I am going through to help others?

Yes, this was a lot easier to type than it is for me to actually try and do. With God's help though I will take this season of my life and make the best out of it.

Taking it one day at a time!!!

Tired of Going Nowhere!!!! (Let me Vent)

The title describes how I have been feeling more often than not. I'm tired of just sitting here in limbo. Overall, most things are staying the same with somethings a little worse, but overall the same. I'm still on TPN. I try eating with more failure than success. My lower GI system still doesn't want to cooperate. My PICC is driving me crazy. I'm tired of not working and therefore no income.

I guess one of the hardest parts for me is to not know how things are going to turn out. I wish somehow somebody could just tell me the end result. Tell me if I will eventually get better or if I will stay like this or if things will just get worse. I know nobody can do that, but being in limbo with no important doctor appointments or procedures, just gets tiring. Nothing new being scheduled to try and see if there is anything that could possibly help me get better.

It has been going on 2 months now since I have been to Temple. To me it seems like I'm not one step closer to anything new than I was months ago. I call Temple every Friday to check and see if I am any closer to getting things moving again. This past Friday I didn't get to speak with anybody so I just left a message and I still haven't heard anything back from them. I'm thinking about calling the insurance company tomorrow to see if they have anything different to say.  If not, I know somebody who has offered to go up the ladder and see if the people they know can get anything moving.

Lately I feel like my faith (what little I had) is slowly slipping away. It seems like God will/can help anybody else, but me. I realize we all go through what we go through because of what God might be trying to teach us, show us, or mold us. It just gets hard when your in the middle of it and you can't see any light on either end of the tunnel. I still know the reality that God has not neglected me or forgot about me, but it's easier to sit here and type it than to actually feel it.

Sorry to vent, but it's been awhile since my last "let me vent" post and tonight seemed like a good night to do that :)

Taking it one day at a time!!!

Reality!!!

Posted in order from most frequent to less frequent:
There will be bad start days with bad end days.
There will be good start days with bad end days.
There may even be bad start days with good end days.
But there will rarely, if ever, be great start days and great end days.

That unfortunately is reality for me. Hopefully if Temple and the insurance will communicate and get on the same page, maybe reality for me can change.

Three important prayer requests from me for this week:
1. That there will be progress with Temple and the insurance.
2. That I would get the job I interviewed for.
3. If I get the job, that the doctors will release me to go back to work soon.

Will keep you posted through the week.

Taking it one day at a time!!!

Bad Day!!!

Today is not a good day at all. Basically if I do too much beside being still I start dry heaving and then it takes awhile to get it stopped.

I did leave a message with Temple asking for an update with the insurance company, but haven't received a call back yet.

Taking it one day at a time!!!

4/14/2011

Still no word from Temple yet. I'm just going to give them a friendly reminder call tomorrow, letting them know I'm still around and need help!!!

No word on the job interview yet, maybe tomorrow (I'm hoping)!!!!

It was a beautiful day today. I was able to spend time outside, loved it!!!!! Hoping for another nice day tomorrow.

Dark as Night!!

When we have so much pain,
That all we can see is our tears
And our days are dark as night.

When all it does is rain,
And we wonder if anybody hears
That we feel like we're losing the fight.

Is there anything to gain?
Can anybody calm the fears?
Will we ever see the light?

We must remember the one who loosed our chains,
As the end of our lives and eternity nears
And imagine what a glorious sight.

4/13/2011

I sill haven't heard anything back from Temple. I'm so tired of nothing happening.

My dressing changes are now going to be every three days. They want to keep an eye on the site since it wasn't looking too good last time. They will be coming tomorrow morning to do it. It's also time for them to recertify me, they have to do that every 60 days, so they will be doing that tomorrow also.

Hoping to soon hear something about my interview!!!

Trying to take it one day at a time!!!

The One Who Holds My Life!!!

I know that there is sickness, but I know of one who heals

I know that there are tears, but I know who brings the joy

I know that there is darkness, but I know who is the light

I know that there is suffering, but I know who is the comforter

I know that there is pain, but I know who is the solace

I know that there are storms, but I know who is the refuge

I know that there are burdens, but I know who carries the load

I know that there is weakness, but I know who is the strength

I know that there are doubts, but I know there can be faith

I know that there are valleys, but I know whose hand I hold

This friend is named Jesus, He's the one who holds my life!!!

Nurse visit 4/10/2011

Today was time for another home health nurse visit. My PICC site isn't looking to good. They are trying a different dressing to see if that helps any.

I had blood drawn which also proved to be quite the challenge. The nurse had some trouble accessing the mediport, but was able to get it on the third or fourth try.

No news from Temple today.

Taking it one day at a time!!!

Interview

I had my interview today. I won't hear anything for a couple of days now. All I can do is see what happens. They offered me to stay and shadow so I did that for a couple of hours after my interview. It looks quite confusing at first but hopefully that clears up with time. Will explain more about the job of I actually get it.

My Mountain's A Hill

I heard a song last night that put things in perspective based on what really matters. My mountain is just a hill from heaven's point of view. What seems so large to me right now in my life is just small in God's eyes. The mountain that is right in front of me that I can't see what is on the other side. That mountain is just a hill!!!

I may think I'm never going to get through this mountain, I'm never going to get to the other side, and I'm never going to come through this situation. The hardest part is not knowing. I don't know what lies ahead. I just have to realize and trust God that even through my problems, through my mountain which seems so big. So big that I have no idea how I'm going to ever climb this mountain. I just have to realize that this mountain is just a hill, from heaven's point of view.

It gets frustrating for me to be seemingly in limbo. No important appointment scheduled. I'm just sitting around waiting to get some Temple appointments scheduled. Nothings changing...it's the same old, same old...... I know that God is the only one that knows my future, but it's hard for me not to know some things. Am I ever going to get off the TPN? Will I be on it for the rest of my life? Is Temple going to be able to help? Am I going to be like this from now on?

I want to make plans with my life and try to have goals. It's hard for me to just go from day to day, week to week, and month to month with no changes and no plans to help things change.

I just have to remember that the most important things in life!! That this mountain may be bigger than Mt. Rainier in my eyes but With God's help and his teaching, I'm going to climb this mountain one way or another. Which actually is just a little hill from heaven's point of view!!!!

Taking it one day at a time!!!

4/7/2011

Well, I had to make a trip to Geisinger today. When I flushed my PICC this morning there was no blood return. I tried for awhile but I couldn't get it fixed. I tried all the tricks I would try as if it was my paitent. When this happens at work we page the IV team and then when they come and try it works right away for them. So that is what happened when I went. The IV team came and right away it started working for them. I felt so stupid.

The job I'm interviewing for is a desk job which is just what I need right now. I am sad that I can't do actual floor nursing for awhile but this is the situation I'm in right now. Hopefully one day I can return to SCU3 and work again but for now I'm happy that they are helping me and found me something that I can do in this current situation.

I tried calling Temple today to see what the hold up is but I just got the answering machine. I left a message and will try calling them tomorrow. I just am getting so frustrated with this waiting game.

Taking it one day at a time!!!