My journey with Ulcerative Colitis from 2008 has culminated with me having a total colectomy and j pouch creation surgery. I'm still struggling daily. My life is far from normal, and I live in chronic pain. That doesn't stop me though. Not much can. I'm like a hurricane.
Friday, June 15, 2012
Is it August yet? No, seriously. Is it?
#1- I can get Surgery Part Deux done, and be on my way with being done with this UC nonsense.
#2- Daughter #1 is driving me mad. She is already bored with summer and wants to go back to school. She has been off exactly 2 weeks. OMG she's killing me. Our neighborhood is a ghost town too. There are a million kids around us, but it is silent and empty. Except for the neighborhood pools. It's weird to me because I grew up with kids all over all summer. You just walked outside and found a playmate. Daughter #1 is very social and likes to be with others. Playing alone is like torture for her. A lot of her friends from school are at camp or vacations etc...so no one has been around much. My energy level is still in the toilet so running around with her is not possible. I made dinner last night and thought I was going to collapse.
Ugh- So needless to say I'm scraping around looking for possible stuff for her to do that won't include me walking or standing too much. I'm still leery about leaving the house for long periods of time.
Things have been kind of hit or miss with me. I attempted to turn my wafer sideways(diamond shaped) to expose some more of my incision but that ended with an exploding bag less than an hour later. So I went back to the tried and true method. Well, far from tried and true, so I guess it's tried and truer.
My belly is looking a bit better. Considering. ---->
The raw area around the stoma is about half the size now thanks to some MAGIC paste recommended by Miss Cassie. I think it's made from unicorn horns or some shit, because it is seriously awesome. The incision is what it is. I don't really have a comment anymore. I'm not even going to concern myself anymore about what the final product will be until after surgery #2 because they'll be opening me back up. I barely have any feeling in the entire area below the stoma. I'm sure another surgery will not help those nerve endings, but oh well.
My dad was in town for over a week. It was nice having him here and Daughter #1 loves it. He's on the fence with moving, even though I know he wants to. I've been hesitant to devote a lot of time to searching for an apartment for him because he's been wishy washy about it. It would be nice to have some family around.
Daughter #2 is trying to walk which has been interesting. She seems afraid of more than one step. Or she's lazy. It's a toss up.
Currently, I am listening to Hubs tying floss around Daughter #1's tooth to tie to a door knob. Daughter requested this method. This tooth as been loose for about a year. I'm sick of talking about it. So she just asked Hubs to tie a string and slam a door. Has this method ever been proven? I'm staying out of that nightmare. I'll let you know what happens.
New pic of my girls and me. VIP is the most uncooperative photo baby EVER!!!!! ------>
Yes, it looks like I am topless. In my front yard. It reminds me of the SNL skit with topless Martha Stewart Christmas special. This is the ONLY pic where VIP is looking at the camera and it figures I'm topless. Patterned maxi dresses are my new BFF to hide my bag. Plus no waist line to deal with. Not to mention I've lost weight so nothing fits that can accomodate my bag. Either stuff is falling off or it fits too perfect but the bag won't allow me to wear it.
I give major props to people who voluntarily keep their ostomies. There are many in the IBD world who do. I am already losing my mind. I don't know how they do it.
UPDATE on tooth- Hubs saying, "This thing is ready to go, just hang on'. Holy crap.
On a different note I drove for the first time in 3 weeks. THAT is the weirdest feeling. Seriously. It feels like you are in a completely foreign situation. I was overachieving to say the least. By the time I got where I was going, I was hurting. And exhausted. Boo! Hub's sick of driving Miss Daisy and my dad is gone so...
I'm just over 3 weeks out from my summer class starting. That's going to be fun. It's at 8am everyday. I must have been drunk when I registered. Well, delusional at the least. Hopefully I'll have more energy and when I get home from class be ready to do some stuff with Daughter #1 because as of right now, laying on the couch is as ambitious as I'm getting.
Hoping to get stuff done around this house after surgery part #2. So much I've wanted to buy and do but no energy and drive to do it. Even shopping for area rugs is exhausting. Hoping I'll be back to my shopaholic self my Christmas. Just in time to AVOID the mall at all costs! Too many years in retail. I just can't stomach the music, the mess, and nonsense.
I hope everyone is doing well. Thanks for reading as always. Have a great weekend, everyone!
Gutsy Broad- out. XO
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Hey colonically challenged sister! You are brave and amazing! Give the ostomy some time...it's really not as bad as it first seems. I had 2, yup 2, and by the time I had my takedown, I was used to dealing with all the annoying things. Be patient with yourself. Keep telling yourself that you're taking your life back and YOU'RE in charge now. You no longer have that nasty ol' colon. Your body will catch up.
ReplyDeleteOh, and don't worry. That chick you used to call "you" will show up again. Just let her body rest and her mind take control!
Thank you. I know....patience, patience!! Not my strong suit! Thank you for reading!
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