I awoke this morning at 6 am for my blood test, emptying my nephostomy, and the dreaded shot (Octreotide Acetate injection). Since I have been having such a problem with the hunger issue; I figured I would at least ask the doctors if an appetite suppressant might work in my situation. I got the idea after seeing hundreds of diet commercials watching so much trash TV in this joint. OK sometimes I can't help it and I will occasionally watch Steve Wilco as he stands there and ridicules child molester, dead beat dads, liers, cheats, and even horrible moms on his stage. How do people actually get the nerve to go on his show? And sometimes I will watch Maury (I miss Montel Williams), but Tyra is OK sometimes. Well anyway back to the diet pills. I'm pretty desperate and to wait an entire 10 more days to eat something seems pretty drastic for me and also to be at home with all of these wonderful restaurants and food in my area; GOD does it seem hard! This will be the ultimate test of how strong I am. Can I do this?
I had the first doctor come in shortly after 7am and I asked her about my bladder infection (not being able to control it) and of course the whole appetite suppressant idea. She informed me that most appetite suppressants contain something along the lines of meth amphetamine. That burst my bubble because I had actually thought it might be a good idea. I'm so desperate; I really hate being hungry and starving all the time. This totally sucks!( 10 days really does seem like a long time. How do people go on hunger strikes, detox, or those poor hungry children!( How incredibly sad. I do plan to visit the homeless shelter and drop off a donation and keep it up (do what I can afford). Hunger sucks!
After 8pm my primary doctor came in to see me and informed that I could drink water and clear liquids - NO SUGAR!. I can teas and even do sugar free Jell-O. I hate Jell-O but perhaps strawberry flavor would be good. I figure perhaps it can fill me up and maybe it won't taste as bad as it did when I was 13ish. Oh how I hated Jell-O as a kid! He also informed me that I get to eat on Friday (that's just 7 more days! = 3 less than before!) I still need some help getting through this testing time of being starved for so long but I think I can do it. I just think about that horrible aweful infection or fistula coming back and that can make me loose my appetite right away; OK maybe my appetite won't be gone but at least my desire will be there. Die Fistula! Die! I don't need another freaky incident of having wierd shit coming out of my surgery site.
I watched "the Dog Whisperer" and then some Maury, and Steve Wilco (trash TV) as I waited for time to go by. My honey arrived around 11am to get me ready to go home. He had to go to the Pharmacy, get my computer and camera, and other stuff loaded in the truck; the Pharmacy took forever. My poor honey had to wait over 2 hours
My honey told me on the way home that he told both of them that he was going to go pick up Mommy and Tonto talked right back to him very excitedly (a whole entire conversation) and Blue Belle's ears were pricked forward flipped ever so perfectly as her head tilted from side to side as if to ask "Mommy's really coming home?". It was very cute to hear my honey tell this story but I knew he was serious by the reaction of the pets. They tend to do this especially when you talk to them. It was as if they understood him.
Well after 2 and half hours of waiting I finally got to go home and it sure feels great to be home. Both Blue Belle and Tonto still can't believe that I am at home. As you can see in this photo, Tonto did not want to leave my site and he just sat here and watched TV with me. He really likes watching hockey and of course Animal Planet. He loves Victoria Stillwell of "It's me or the Dog!". See him just sitting right there? He would watch the TV and then turn around and look at me like that all because he couldn't believe mommy was just sitting there with him. It was so cute to see!)
I do have to be honest that we are worried about him trying to play with my feeding tube because it's white and thin and it could entice him to wack at it and if he makes a whole it might be very yummy. He does not need to gain any more weight! So far so good; he's not chasing it or wacking it.
At about 3:30pm a really nice nurse came by our house to make sure everything is OK; go over all medications, my picc line, nephostomy dressing (on my back), and of course my bags of food with supplements. She had tons of paperwork to fill out and it took over 2 and half hours. She changed my dressing (didn't have the right kit but used guaze? instead of the little pack man thing around the picc insertion point) on my nephostomy tube on my back (SHIT did that tickle & hurt in the worst way - OMG! I have hair on my back?), and she changed my picc line which I took a photo of (it's just above Tonto's photo) to see how trippy that looks. I was puzzled as to why she had to change it even though she didn't have the right kit. I hate pain anyway; especially unnecessary pain. Notice those wrinkles on my arm; that's from tape that was literally pulled off my now hairless arm. Ouch!!( My honey has to flush my main picc line twice a day and the feeding one (purple) once a day when he changes my food. More responsibilities for Dr. Jim!
I'm pretty bummed that the I have to be hooked to this back pack 24 hours a day. It weighs about 15lbs with a full bag of food. I was told that I would have 4 hours of freedom where I could detach myself from it for about 4-6 hours but the nurse just informed me that this is not true. My stupid machine thingy is programmed to slow down the feeding for 4 hours and I should still be plugged in? How bummed am I about this?
Well later on at 7pm we had another nurse show up to help my honey with the food bag, the shot, and changing my dressing (on my tummy=nasty one which is healing nicely). He was nervous but he got everything correct in what he was doing. The nurse mostly showed him some tricks and helped in the procedures of doing what he needed to do. The other nurse had arrived too early for the feeding and all of this stuff. She came into the living room as my honey was laying out everything he needed to get my food bag together, even talking to himself to help himself remind him of what he needed to do to better prepare. She told me she thought he was very cute and he was doing a super job. She had to ask him what he did for a living because she thought it could be related to nursing but no; not at all; just loving his wife and having the experience of taking care of her. It took about and hour and half to get everything done because of priming the food bag apparatus (not sure what it is called), then having to flush both of my picc lines too! I'm so incredibly proud of him!) What a wonderful man to be married to! I couldn't have asked for a better man - I really do have it made!) Many wait their whole lives for love like that and I am so blessed to already have it!)
What a huge responsibility my honey is taking on and if you really want to know the true meaning of love; there you go. That's it. We love each other no matter what and would do the same for each other. I really hate being the patient sometimes but I guess it's better that I suffer instead of him because I know it will kill me to have to see him have to go through what I go through. I just can't imagine what he has to go through watching his love suffer as I do with this horrible disease. I often wonder why we were chosen to have to go through all of this and what we might have done to deserve this. That has been the question lately; as patients we often ask "why me?". I had got over it after a while but lately with all the trouble that I have been having; I feel I am back at that point. I'm pretty strong but sometimes it can be downright ridiculous what I have to go through. Yes, I'm admitting to being frustrated many times and am being a big baby!) I get through it each time and I'm so very thankful to still be alive!) Peace and Love to all!)
Forgot to mention; the second nurse then informed us that I do get a four break of being hooked up to that big black bag of food! First nurse is wrong! Yippeee!!!!)