Decision Time

Tomorrow is the day. I think that I have tried everything I can at this point to avoid surgery. It has been 4 full months on "the backpack" and I have just got sicker. Now along with the pain I am not absorbing what I need to survive. I don't want to let someone cut my belly open, but it sounds like I no longer get too much say in what I want. I am ready to feel better. I thought it was the worst it could get a few months ago. I was wrong. I am in excruciating pain, at times I am doubled over, in agony. I am not sleeping, or functioning. I consider myself to have an extremely high tolerance for pain so the fact the pain is bringing me to my knees is bad. We meet with my doctors tomorrow afternoon and I am extremely anxious. He has given my three options, all of which I hate! I have decided the option I want and at this point just hope they will move quickly. I know a couple of weeks ago he would have done it immediately. The doctor told me he feels like he is being inhumane to continue to watch me suffer through this.
Pray that the doctor will let me choose the decision, and that I will not get put in the hospital at my visit tomorrow (he keeps threatening me), and that I can get all my Christmas stuff done! It is stressing me out. I am NOT a last minute person so not having the shopping done or anything decorated is soooo stressful for me. I'm going to work on it over the next few days, I am sure it will get done, right :)

Have Joy

Every day like a lot of you I do a little "blog surfing", especially lately. I am a little embarrassed to admit that I spend a lot of my day sitting on the couch, with my laptop (I don't know how people actually live without one :), waiting for all of you to update your blogs. Luckily I read a few trusty blogs with updates daily. One of my favorites is "Have Joy" http:// http:// have-joy@blogspot.com!! I actually look forward to her daily updates and have even learned a thing or two. Right now she is doing a give away from California Carmel Company! Nothing says "Fall" like a caramel apple!
Sitting at my laptop reading blogs, eating chocolate and caramel!! I can't think of anything I love more!! Now if only I was eating....... but more on that later when I am in a more positive mood!

Update

I have decided this is the easiest way to update. We are not good at answering the phone or making/returning phone calls. I even been too lazy (or tired) to answer emails.
It's been a rough week. I lost my picc line last week (it broke) so I got a new one last Friday. Since (last) Saturday I have been in a lot of pain. My arm has swelled and throbbed, clear down to my finger tips. And I have been soooo tired! Not a little, "I need a nap" tired but a "I cannot keep my eyes open even though I just woke up", tired. I talked to the doc on Tuesday and she told me to take meds and I would be fine. Went to SF with Kellen's class on Wednesday and truly thought I was going to die by the time we got home.
Called the doctor Thursday morning and she finally decided she was concerned. She scheduled labs, a CT scan, and an ultrasound for right then. I left work, drove to UCDavis, did my labs, then to ultrasound. My ultrasound was PAINFUL and she briskly walked around the curtain (very private) to call my doc and tell her that I had a blood clot. I asked if I could go grab a drink and her comment was, "Hunny they are gonna send you home to get a toothbrush and come back. You can't go get a drink." That made me feel good, or not. After talking to the doctor for a bit she sent me to her office (it is hooked to the hospital). I was not happy to see she was an hour behind. Did you know if you have a blood clot you don't even have to wait two minutes, let alone an hour? We talked and she decided she was going to have them pull my new picc line with ultrasound to see what the blood clot does. Then insert a new picc line. Have I mentioned picc lines HURT! I am not a fan. They hurt when they do them and then a few days after..... The give you a shot or two of lidocane to numb the spot insert a metal wire from your elbow, past your shoulder, and into the major vein running to your heart (that is how I understand it). Then they insert a dilator, or a hurts like nothing you've ever felt, into your arm. Then they insert the picc. They claim that I have to skin of a elephant and have to use a scalpel to make a small incision to get it in, they run it up my arm, around my elbow, up my neck (until the flush it and realize it is in the wrong spot) then down my neck. After all that you wait for xray, then wait for someone to read it only to tell you it is in too far. They then remove the 6 rolls of tape they have put on your arm (maybe only 5 :) to pull it out and tape it up again, only to have it untaped and checked again in 24 hours.
After my picc we were sent back to the doctors office to have a "pow-wow". Again if you were just torchered they don't make you wait too long. We talked about the fact I am actually doing better then they expected and that I should still feel like crap (an understatement at this point) and that it might be time to take a look and run some tests to see what is going on. The doctor also decided that he might try to go in and cut out the spot but not until December. I have to get healthier and there has to be less swelling (it needs to be smaller so he can cut out a safe portion). I left miserable. In pain, frustrated, and I think getting sick.
We were home about 20 minutes and the doctor called (I think she missed me). She said she had just got my labs back and I have a dangerously low amount of iron (hmmmm maybe why I'm sooooo tired?!?!) My ulcer is bleeding (could have told you that) and my old picc bled a pretty good amount. So she called in a huge amount of iron and talked about doing infusions (I think that means in my picc line, not sure. It cannot go into my "backpack" because of the other stuff in it. I guess it won't absorb).
Anyways, that is where I am at. I went back to the hospital today for them to take a look at my picc line (thanks Ann for driving me)! I go again Monday. BOTH of my arms are sore. I have been instructed to ice one and put heat on the other. I am exhausted (hospital and soccer all I could do today). I for some reason have a horrible metallic taste in my mouth and flushing saline into my line makes it a million times worse (even the See's candy I snuck today tasted awful)! AND to top it off.... I am getting sick. I have the sorest throat, it is swollen and is making me even more miserable (I thought that wasn't possible, I was wrong.... again)!
The reality is it could be worse, I'm sure it could. Maybe if I spent less time complaining I would feel better. Maybe I should work on that! I really appreciate everyone for their prayers, love support, and all the help we've had! I can not do it by myself anymore, even though I am trying! We feel so blessed to have such fantastic family and friends!! I am taking some meds and going to bed. Hoping to make it to church for at least a little while tomorrow! Goodnight!

We MUST Need A Vacation?!?!?!?

A remote control car came driving at me the other day. It crashed into my feet and this is what I saw first:



It says, "Take the one under". So I lifted it up and and there was another note.



It says. "go on vacation you need it"

It was from Camden. So stinking cute! I am thinking we need to plan a vacation?!?!?

This is NOT what I meant when I taught my kids to share

I am having a rough day.......
Kellen left for Sly Park, which has been sooo much harder for me then I thought it would be! Because of my own health I am stuck NOT being able to go with him. It makes me mad, and sad. Really sad.
I woke up and thought I was just tired, I went from saying goodbye to Kellen straight to work. I got my stuff and sat down at my desk and my head just started spinning, and throbbing. I called my boss, said I was going home to get some medicine and then I would be back. I never made it back. I am sick. Mekenzie was sick last week, she shared. I don't have time to be sick, and sadly I don't even have the energy to be sick. Even carrying my backpack to and from the bathroom is too much right now. I think I got sick because I let my guard down and had a pity me day. Grrrrrrrrrrr. I am lucky to have Mekenzie and Camden here. Mekenzie took care of dinner and picking up after (she is a really good kid)! Camden gave me a hug when I had a meltdown a minute ago. I said, "I'm so sorry, I don't know what is wrong with me"!
He replied, "It's ok, you're just being a mom". Sooo cute, and so sweet! Made my night! And his since how could I tell him he could not sleep in my bed after that?
I am sure tomorrow will be a better day. It has to be, right?!?!?

I got over it

I took my few days, felt sorry for myself. Now I am over it and back to doing what I've got to do. We are really fine, really. My attitude is much better and I am back to being able to tackle the world!
I AM having a little panic attack about Kellen going to Sly Park without me this week, the doctor (mine) will not let me go with him. Kelly will go for a few days and then we will go up to "flush" him in the evenings for the last few. I've never NOT been the one to take care of him all day and it is worrying me a little. I know he will be fine so I'm not sure why I am worried, but I am.
Kelly took both of the boys camping this weekend with the scouts. I miss them and am ready for them to come home but it is always nice to have time just me and Mekenzie. She is just getting more fun to do things with as she gets older. I LOVE spending time with her! Since neither of us felt good we really haven't done anything exciting, but it was nice to be together (just picked her up a breakfast - it is 11:00am - of french toast sticks, curly fries, and a oreo shake)!
Now to cuddle on the couch in my snuggie and let Mekenzie bring me laundry to fold! See were good!

I Hungry

I Hungry
Kellen said I needed this bumper sticker for my backpack.
I am grouchy! So be prepared for a grouchy post!
I am getting tired of walking around the house to the Dora song “Backpack Backpack” sung by my kids (Mekenzie). I am tired of making food and not eating it. I am tired of having this tube hanging from me and tripping on it. I am tired of having to lug this 20+ pound backpack with me everywhere I go. I am tired of having to go to the bathroom a million times a day. I am tired of “beeping” and sounding like I am carrying a bomb. I am tired of gaining weight even though nothing goes into my mouth. I am tired of being tired, and nauseas, and always having a tummy ache. I am tired of getting up at night and having to untangle all of the cords plugged in around my backpack. I am tired of tripping over my tube on the stairs, getting in the car, on the couch. I am tired of forgetting I am tethered to a bag only to walk away and rip the tape that is holding the tube onto my skin. I am tired of it being so hard to shower because I can’t get the arm my pic line is in wet. I am tired of asking my husband to help me wash my hair. I am tired of only being able to move 3 feet from where I drop my bag. I am tired my house is falling apart around me, and the laundry is not getting done because it is impossible to carry clothes with my huge bag. I am tired of sleeping but not feeling rested. I am tired that since CA is having a nursing crisis no one is actually in charge of my care so when I have a problem I go in circles until I realize no one cares. I am tired of getting labs drawn 1, 2 or 3 times depending on the week.
I have been on TPN or IV nutrition now for 6+ weeks. I go back and forth from feeling like its getting better to being miserable and not sure if any of this is working. On the bright side they are letting me eat some foods (yogurt, sf jello, and applesauce), the problem is anytime I put something in my mouth it makes me so sick I wish I didn’t.
I’m giving myself today to be grouchy. Then I am going to get over it and just deal with it. So Grrrrrrrrrrr …………… to be continued when I am feeling more positive (or I can fake it better then today).