Can I please get rid of this pee bag?

Thought I would include this cute photo of my dad walking Tonto (Tonto walking my dad) for all to enjoy. This was just one of the fun things we were able to do together during his visit. I took this one just this morning.

Forgive the name of this post but I guess I really do mean it. Since I get to celebrate my birthday all week long (I'm celebrating all year if possible!), that's what I would like on Thursday. It's my Birthday wish = Get rid of the piss bag!) I have surgery to hopefully internalize my stint or so it's called but I have been so incredibly annoyed by the nephostomy tubes coming out of my back all week long.

I get in the car to drive my family around (brother and father) and then I accidentally sit in the seat all the way with my back touching the back of the seat and then it makes me jump (it kind of feels like a pinch) like I just sat on a tack ! Sometimes going to sit on the couch can be a little painful there too! Oh and not to mention being so worried that the tubing is coming out of my back; that too sucks!

I did get the dressing changed on Thursday (right before my brother arrived) and the first day the dressing came completely off exposing the tube in my back. My honey has been having to change the dressing each day and he too is tired of it. May this nephostomy bag be no more Thursday. Oh did I mention, it itches like FUCK! OMG! It also leaks and burns! It totally sucks and I don't know what to do about the itching, except it totally makes me want to scratch the living shit out of it! I can't help it sometimes. between the itching, pinching, burning and then the pulling or so it feels like. It's so ready to come out!

Well my dad leaves today at 3pm today and then tomorrow we have to be at the hospital at 1pm and then at 2:30pm my surgery starts. I get to go home at 5:30pm or at least my honey needs to be there to take me home then I get to sleep off all the drugs and hopefully I won't have this stupid bag on me when I wake up as I did last time.

"Please GOD don't let this surgery be a failure; please let that stint go all the way through my ureter without a snag!"

Hell I am so tired of all the tape that is always on my back getting stuck on my clothing and snagging on everything it touches, I'm so tired of not being able to take normal showers, not being able to go swimming, or sit in the hot tub, not being able to take normal baths and so much more! How limiting is that? I'm also tired of the seemingly constant urinary or bladder infections I always seem to have. I'm also irritated that some company (I'm calling them and giving them a piece of mind) doesn't wish to include a cap on the end of the bag so that sometime piss will dribble on my knee or my clothes or sometimes the lever will accidentally slip and then piss is all over me. Please come off tomorrow Nephostomy bag! Please! Is that too much for me to ask that I can just piss one way and not two? Not to have all this tape on me and this pain can finally end?

Well even so, I should not be complaining period about this. Poor Becky seems to be getting more bad news and what a brave woman she is for enduring this and so much more! She may very well have to deal with 2 Nephostomy bags and she just keeps on going. We survivors have to keep going and dealing with our issues. Yes, we have those sucky moments, but we also have good moments too! I'm getting by more and more each day. She is blessed to have a wonderful family and a very cute son; but what about what's going on in her body too? Here's to her being able to have some sort of normalcy for her too!) Let her get rid of those nephostomy bags too! She's too young just as I am to be going through this shit!

I was able to wake up early enough yesterday to make a wonderful breakfast for all the men in my house (honey, dad, and brother) and then the pain just started. It wasn't so bad at first,; I just went upstairs and dealt with the spasms as they got worse and worse. I did my Sitz bath to calm them and to go number 2. What a disgusting way for me to have to live; always dealing with Shit!( It's really such a disgusting process because my dam butthole burns so horribly (stomach acids from a short intestinal tract) that I have to have hot water there when it comes out. It really does feel awesome with the hot water on my bum!) Then I have to pore the water and shit down the toilet and I do this anywhere between 5- 10 times in a row each time. I literally have to clean out the pink tub 3 times in between and the water has to be the perfect temperature each time. Not too hot and definitely not too luke warm. This is the truth of what I endure each day now as my intestines continue to heal. NO it's not at all pleasant, but please do be glad that you can at least take a normal shit each day because I sure as hell can't (just yet). Well, technically I can; it's just not normal.

OK well at least I am taking a shit each day, but I take about 20-30 each day and dam it burns like hell coming out; that's where the hot water hits the spot and not to mention those painful hemi's (hemorrhoids) that I get too; like that's not enough torture for me. Let's just add more insult to injury for me - NO let's just don't = off with the pee bag tomorrow!)

OK enough about my shit. My honey had to take my brother to the airport alone because I was having such severe abdominal and anal spasms. I was also crying and crying and just totally upset that I wouldn't get to take my brother to the airport. It really meant a lot to me to be able to hug him at the airport and to send him off properly. I hugged him and then walked upstairs crying and just bauling my eyes out as he promised me that he would come out to visit me more often and that there would not be another 4 year gap where we didn't get to see each other. What a dramatic moment that was and to see that on the big screen would have torn hearts!(

After I was kinda done, I went back downstairs where my husband and brother were outside smoking a cigarette and having man time. I was so glad that they hadn't left yet; so I got to say good bye some more. You can kind of tell that I have been crying heavily in this photo taken just before my brother left for the airport. It was such an emotional good bye and I could see him holding back tears and then I cried in his arms over the frustration of my system. I was practically hyperventilating and after they left; my father stayed to make sure I was OK in case he needed to take me to the emergency room.

I was in lots of pain and I finally let the OX down enough to take some Vicodin for the pain; (I'm such a hard head sometimes) as I waited for the pain killers to take effect, I rolled myself a joint and sat on the couch next to my father. I was breathing kinda hard and trying to catch my breath from the severe pain I was feeling. I still had tears streaming down my face and then I headed back upstairs for some more Sitz baths.

I guess I'm just a glutton for punishment sometimes because sometimes I will sit there for hours in pain and not touch a single pill. I have to be reminded because I am so frightened of becoming addicted to painkillers. Why am I so afraid of these pills? I don't know why I am so scared of those pills but it does take a while for me to actually take one. I have to be in bad pain to do so and sadly it seems the pain has been ongoing. They say it won't happen (addiction) but I think it just happens if you do it automatically each day. I just touch them if the pain level hits about a 7 or 8 (on a scale of 1-10). The pain I was feeling was close to a 9.

Finally the pain calmed down enough for my father and I to go have some lunch and then we headed to the hospital to pick up a prescription and a note from my doctor about returning back to work and then drop that by the business office. My doctor does not feel that I am ready to go back to work next Tuesday. My new return date to work is now July 27th. I had asked for July 15th but I guess he just wanted a few extra weeks to make sure I that I am ready. I am relieved because I could not imagine having these spasms at work and then if I had to go home and the long drive (35 minutes) back home. I wouldn't make it right now the way my intestines are doing now.

I can tell that I am healing more and more each day and have been gaining more weight. I just weighed myself with clothes on and shoes, keys, and now I am up to 121. Yeah! past 120! I didn't think it was possible and now it is. I'm doing everything right that I can think of doing just to heal. I'm taking Tonto on 2 walks per day (short ones), trying to squeeze in some frisbee with Blue Belle down the street, eating through out the day and much slower, drinking lots of water and cranberry juice, easy Yoga stretches each day, avoiding stress (the news = I do have to watch Rachel Maddow as she always seems to cheer me up and gives me news in the best possible way!).

I'm still doing the Relay for Life and I finally got my minimum raised so I'm all good and working on getting stronger and stronger. Thank you Nancy for helping me reach my goal! I have to be able to walk for at least an hour. I did that just on Friday evening with my brother (we walked about 45 minutes). Here's to a cure in our lifetime and more fun to be had for me! I hope I have 10 - 20 more snowboard seasons in me!)

I was able to have a little fun with my dad before I took him to the airport and sent him off right. We took Blue Belle to the Church for a quick game of frisbee and then had lunch at Aqui in Downtown Campbell. What a quick vacation; I had been looking forward to this for months and now it's all over. At least I can look forward to more visits from family. I know I can't fly just yet, but hopefully next year I will.

Here's to my pee bag removal tomorrow. May there only be a band aid on my bag and NO Tubes!)