July 4th Fireworks!!!

These are the results of trying to get some pictures of the fireworks. We went to a local town that was having some that night. This first one here is probably my favorite one. I don't think we had a good view of the firworks. In all the pictures there is a tree on the right side that blocked some of the view.

GI Nutrition Appointment - 6/30/2011

I had my GI Nutrition appointment last Thursday. I really like the doctor I see for my nutrition appointment. He was a fellow but as of July 1st he was going to be an attending. I requested to keep seeing him and he agreed so that was good. I will be going back in another month.

I got my first B12 shot that day. They are going to start doing them every 3 months. I haven't noticed a difference since getting the shot though. I was hoping it would give me more energy or something, but I can't tell that anything is different.

I did have more bloodwork done today to recheck things since they changed my TPN formula the other week because my labs were messed up. So we will see how they are this week. They had it done today so they can change the fomula for tomorrows delivery if they need to.

I will be having some other bloodwork done around the 18th that my family doctor wants done. Other than that I will see GI nutrition again at the end of the month.

Taking it one day at a time!!!

Lucky!!!

Update Ramble!!!

Not too much new to report on lately. Temple is still not returning my phone calls. I will be putting in another call/email this week. I have a GI nutrition appointment on Thursday. My labs were off last week so they will be needing redrawn next week. They had to adjust my TPN so we will have to see how my labs look next week. Will keep you posted as/if anything happens!!

Taking it one day at a time!!!

Photo of the Day!!!

June Photos

6/17/2011

Still haven't heard back from Dr. Fisher, so I guess I will be calling back on Monday and seeing what is going on. I've noticed that Temple seems really bad with getting back to me after I've called them. I even spoke with a real person this last time and still haven't received my call back yet.

I also am having my blood work on Monday. I had them add a hepatic function panel to the labs because I've been noticing that my eyes are a little jaundiced. Liver failure can be an adverse effect of TPN, so I just want to make sure that everything is alright.

Other than that there is really nothing new happening. Just taking it one day at a time and trying to go with the flow!!!

Temple update!!!

I put a call in to Temple, specifically Dr. Fishers office, last week to see what I am to do now. He wanted that specific test done first that geisinger insurance will not cover. So I called him to see how he wants to proceed, so I am waiting to hear back from him. Will call again this week if I still haven't heard anything by Thursday or Friday.

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

Wednesday Wonderings

So, I've been doing a lot of thinking lately about the future and realistically how these problems are going to pan out in the long run. I just have different thoughts about if this or this happens, then what?

In regards to being on TPN with no idea when I could come off of it and not do it anymore. TPN has to be given through a central line. Well anytime you put a foreign object into the body it has a good change of becoming infection since it is foreign. It is the body's natural response to fight off things that are not supposed to be in it. So, I started off with a PICC through which the TPN was given. That became infected and I really had no other place for them to put another one, so they had to put in what's called a broviac. That line was placed in my subclavian (chest) area. So what's going to happen when that one becomes infected? Where will they put the new line? I figure I will eventually run out of places for them to put the lines for me to get the TPN. If I don't get the TPN, well then......(let's not even go there.)

In regards to treatment options and Temple. Things have gotten worse since I have been at Temple. My bowes have since gone bad. There was talk about the gastric stimulator. Well, if they are able to stimuate my stomach and I am able to eat, then it will just back my bowels up and cause more/different probem. It seems like it's a no win situation.

I've also gotten to the place that I have been dealing with this for so long with no improvements, that I have pretty well lost hope of ever getting better. By that I mean through medical and spiritual intervention. I know God is the Great Physician and can do miracles, but I feel like he can do that for everbody else but me. Then it seems like everytime the doctors refer me to great places that specialize in treating this, that I just fall through the cracks. I found out last week after 3 months that my insurance will not cover me to get the first test that I need done at Temple. So now I have a bunch of phone calls to make, but with no real hopes of getting anywhere which doesn't make me in a hurry to do them.

Now for something on the cute/funny side of things. I was talking to my nephew Taylor on the phone the other day and was asking him what he wanted for his birthday which was last month. Here is how the conversations went.

Taylor: " I want a gun that will shoot real bullets and when you pull the trigger the bullets come out and kill people."
Me (in shock): "Who do you want to kill?"
Taylor: "Drugs"
I was shocked because Taylor is the sweet one and it just surprised me that he would even say something like that. Then when he said drugs I realized what he was trying to get at since drugs are a big issue where they are at.

Hoping to be able to sleep good today and be well rested for work again tonight.

Taking it one day at a time!!!

Update 6/8/2011

Nothing too exciting has been happening lately. I've been keeping busy with work.

I went back to work right away as soon as I was done with IV antibiotics. Work really takes a lot out of me, but my main problem is that I can't sleep. I usually don't get to sleep until 10:30-11:00 and then for some reason I am up by 2:00-3:00 and then I'm done sleeping. I sometimes will try and take a nap again before I have to come back in, but most times I think it makes it worse. I don't know whats with my body. It seems weird to me because at home I can't sleep, but when I was in the hospital it seemed like all I wanted to do was sleep.

I had a doctor appointment yesterday with the family doctor for a follow up from my hospital admission. I scared the PA a little because at first she thought I had a fever, but when checked via a different route the reading was better. She did mention she would like me to keep track of my vitals to make sure I'm not spiking any fevers or anything like that.

My next appointment is not until the end of the month and that is with GI nutrition to see if my TPN needs adjusted or anything.

Taking it one day at a time!!!

Flowers!!!

Taking Time to Listen!!!

As I write this post I am sitting outside on the porch. Listening.......

It is amazing what all you can hear if you just take a moment and close your eyes and listen. What do you hear? I hear many varieties of birds chirping and tweeting, a tractor, cars and trucks that occasionally drive by, crickets chirping, bees buzzing, an airplane flying overhead. Some sounds are much more louder than other, while others are subtle sounds that you specifically have to focus on to be able to hear.

We often get so busy in our day to day lives that we don't take the time to stop and listen. We would be amazed what all we could hear if we just would stop and take time to listen. We don't realize how peaceful and relaxing it can be to just stop and take a few minutes to close our eyes and specifically pay attention to each thing we hear.

This can be applied to our spiritual lives. We often get so busy that we don't take the time to stop and listen. We don't stop and listen to what God is saying, or what circumstances in our lives are trying to tell us because we get so busy we don't take the time. As I mentioned earlier, some sounds are much louder than others, and they tend to be the only ones we hear. We have to specifically focus on the important ones and tune in on them to be able to hear. Our worries, problems, and circumstances are usually the loudest ones in our lives but we have to be in tune with God to be able to hear His still small voice. We need to block out all the other noises in our lives and focus on the most important one.

Taking it one day at a time!!!

When It Rains, It Pours!!!

When it rains, it pours.

Wednesday I found out that my insurance will not cover me at Temple. I wasn't happy with the news, but what bothered me the most was that they waited 3 months to figure that out and tell me. We are in the process of trying to figure out how to approach this and what we should do next. There are a couple options we can look into, but it still doesn't look too promising.

Then on Thursday morning after work when I went home to hook up my TPN my PICC site was all red and nasty. I know it had been hurting at work that night, but it occasionally had done that in the past so I wasn't too concerned. So I had to drive all the way back to Geisinger and they said it was bad and it had to come out. (which means no TPN and no nutrition) Then they scheduled me for surgery the next day to have a tunneled cather placed (also known as a Broviac or Hickman catheter).

After coming home again my arm then started with a nice red streak going up it. After phone calls to the GI clinic and a visit with a home health nurse I had to come back to Geisinger and go to the ER. They gave me a dose of IV antibiotics and had me come back first thing in the morning to see if they would still do the procedure or not because of the infection.

So Friday I came to Geisinger for 7 am. They did decide to go ahead with the procedure. After the procedure was over and they were getting ready to discharge me when I stood up my heart rate jumped into the 150-170's. So they had me sit a rest awhile and they decided to give me a bolus of normal saline to see if that would help any, but it didn't. Then it was decided that they thought my mediport catheter was tickling my heart, so they decided that they would go in on the other side and pull out the mediport and clip the catheter and then put it back in. So I spent all day at Interventional Radiology then waiting for them to do this second procedure.


I had a little bit of a rough time during that procedure, but after it was over my heart was still acting up. After a few phone calls and discussion, they figured my heart was beating so fast because of dehydration from not being able to do my TPN for a couple of days. So they decided to admit me. They wanted to watch my heart, give me TPN, and give me IV antibiotics.

So I still sit here in the hospital, hoping to soon get out. I need to get back to work....

Taking it one day at a time!!!

Giving Thanks In Everything.....

I grew up hearing/thinking that God will never give us more than we can handle. Yet I look around and see people in situations that appear as they do have more than they can handle. Sometimes I even feel as if I have more than I can handle. Then an incident happened a couple years back in someone's life and it honestly seemed that person had more than they could handle. In the end they ended up committing suicide. I looked at that incident as if they were given more than they could handle. Then someone reminded me that he did have more than he could handle on his own. It's true, in his own strength he couldn't handle it, but that's is not the point that's trying to be made. The point is that God doesn't give what we can handle, but He helps us handle what we are given. In our own strength we can't handle things in this life, that is why we have to have Him on our side.

I also grew up always hearing/thinking we were supposed to give thanks FOR everything. I had a hard time understanding that, let alone doing it. How can I give thanks for cancer, gastroparesis, death, pain, storms, etc? You know deep inside that everything happens for a reason, but to honestly be thankful for it? Then tonight at church I heard that phrase in a different way that made much more sense to me. God did not say to give thanks FOR everything, but IN everything to give thanks. That may sound like the same thing just worded differently, but if you really think about it, it's not the same thing.

These two thoughts are actually tied together (at least in my thoughts.) Whatever situations we find ourselves in, we need to be able to thank God for it and let Him help us handle it. We can't give Him thanks when the situations are tough and we don't understand if He is not helping us to handle it. If He is helping us handle whatever situation we are in, then is when we will be able to give Him thanks in EVERYTHING!!!!

Fishing!!!

Went fishing today with my dad at Montour Preserve. It was a beautiful day and we even caught some fish. I was also able to get some pictures of the lake. Enjoy!!!

A cute little chipmunk that posed for me :)

This was a mushroom, but I had never seen one that looked like this so I had to take a picture!

The sunfish my dad caught!

The bass that I caught! (I wish is would have been bass season, but then again if it was I wouldn't have caught one then :)) I was just so tickled to catch a fish. My goal was to just catch one!!!

I think the sky is so beautiful in this shot!!

Here is an interesting story from the day yesterday. We were walking on one of the trails back in the woods and dad mentioned that he heard some water running. I looked around and I saw what he heard, but it was NOT water. It was a hole in a tree with hundred of bees swarming around it. I probably wasn't more than 6 feet away  from the when I saw them. If you know me, you know how much I can't stand bees. I was just so happy that they did not swarm and attack me. I had never heard a swarm of bees buzzing, but it was fairly loud. I didn't want to stick around long enough to take a picture even though it would be a cool picture.

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.