Thursday, September 3, 2009

Some old posts - post-surgery

July 24, 2009
Always look for the bright side of life...


Always try and be looking for the positives. That's what I try to do.

1. I have been able to keep my weight down - I used to be consistently overweight before getting so sick 3 yrs ago. Nothing sh*tting yourself blind and living on steroids and hospital food can't cure!

2. I don't have to worry about the hassles of dating - I am still getting used to this body full of weirdness (ileostomy, seton band) and don't want to want to share it with anyone. It's MINE ALL MINE...

3. I get to enjoy the summer because I'm on disability. Still. For a year now.

4. I get to revisit the hospital again in the fall for more surgery - and hopefully by then they will have a Frequent Flyer plan!

5. I have learned patience. I am learning patience. I'm still working on patience.

Okay, that's it for now. Enough frustration to last awhile, but on the other hand, being sick sure teaches you some real important things - about the people in your life, and about what we are capable of. I am not quite like Michael J Fox able to say my disease is a gift, "the gift that keeps on taking" as he refers to his Parkinson's, but I am able to - most days - be pretty content, and not wallow in self-pity which is really, self-destruction.

Love life, and life with love you back. To a point. Kinda.


Tuesday, July 7, 2009.
searching for seton doesn't bring up much...

Happy Birthday to my dear son Derek on your 24th birthday. How owould you like to spend it with your mom? At the hospital? While I get a huuuuuuuuuge slice in my bum to fix my abscess? To his credit, this amazing young man said there is nowhere else he would want to be. I am truly blessed. Off we go to the hospital. Sit and wait... prep... stew... repeat. Daughter Jamie called to check on me and wished her bro a happy birthday. She's a good girl :) Chat with Dr. Rosen, we're ready to roll, takes my hand, see you in there. I feel comfortable once again. Porter arrives, on the move, bye Derek, bye mom, love you lots. through the big double doors, down the hall, around the corner, another corner, through the next set of doors, and I'm a star - under the bright lights. Shuffle from gurney to operating table, so narrow and hard and cold. Oh, heated flannel sheet, thank you, feels lovely. Breathe in some oxygen, more deep breaths, meds into IV, more meds into IV, okay, this will sting but put you out, i'm out. Wake up to shock of tube in throat, hang tight, you're okay, out it comes, we're done, how are you feeling? non-stop babbling due to adrenalin rush from that little experience, doing fine, pain only a 3, are you sure, yes i hurt lots before coming in, it's all relative. How about now, morphine please, gravol please, feeling better, g'night. Back to the day surgery ward, welcome back, all went well, just rest. Derek's back, how are you mom, i'm okay, g'night. Awake again, more awake, more awake, wanna go home. Doctor coming, doctor not here yet, have a ginger ale, still not here, there he is, sorry for the delay. All went well, abscess drained, inserted seton band, what's that, a band that goes in and around to help drain and heal from within,. So strange to have abscess and fistula with UC, but still nothing that looks like Crohn's, so baffled but hopeful, come see me next month, stay off work for now, will check you out then, next surgery for fistula, when does seton come out, we'll see, they can stay in indefinitely. what? Yellow elastic hanging out of an open wound? And that is what I want to know more about. Today, pretty much back to myself, sitting tough, laying on my side better. Will be a bed princess for a day or two, but then hope the T3's are being consumed slower. Meantime, sitz bath, T3s, rest, repeat...


June 18, 2009
I don't want to play with you anymore...

Oh, IBD, you are no friend of mine... I don't want to play with you anymore... you are not playing fair!

Ok, well... illness doesn't play fair. Gotta suck up my frustration. After I wallow for a minute or week or month.

Went for my second post-op follow-up including "let's take a look at your bum" during which I chewed on a knuckle - owwwwwwww! "Oh, yes, I'm sure it hurts more now becasue you're not using those muscles anymore." Um, can you say hot poker up the behind? I think the feeling would be about the same. Oh, and air? Now you're gonna blow some air up there? Yaaaaaaaaaaay!

So - butt doesn't look good. Doc expected it to look better two months post-op. figures there may be some Crohn's in the remaining stump. This is my surgeon's partner I saw - he's never believed it's been UC and not UC+Crohn's. So - July 7th, gonna take a look. Also - the abscess by my fistula isn't going away so it'll be drained and a drainage tube inserted for a couple months. THEN once tube is removed they'll look at repairing the fistula. Doc said right now he wouldn't even consider j-pouch surgery next year. More wait and see.

Work? Nope, can't go back to work, Doc says we're not done yet. Okay - once again, living a day at a time. Uncertainty piled on uncertainty. And this too shall pass. And I will overcome. And be strong again. Because that's the way we roll!


June 14, 2009
We got it done!


I wanted to raise $1000 for the Heel n' Wheel-a-thon --- we finished with $1064.98! Raising funds is much easier when you are afflicted with the disease you're raising funds for. I originally didn't think we'd stand a chance of raising $1000, but I was thrilled when the donations started coming in. Funniest moment - my personal goal was originally $500. When I was close, a friend sponsored me $69.98. This brought my personal total to... wait for it... $499.98! What a smart-ass. I also smiled a big ol' smile when I surpassed $500 and then $600 and $700 and more.

Yep, it was such a good day... my kids and kid-in-law, Oscar the wonderdog, and wonderful friends in Jan, Jo and Diane by my side making it what it was. Sure love them and all their support, today and every day I know who I can count on. Nice warm day, sunshine when we needed it, haze when we needed it. I went into this wanting to walk 5K, and I did it.

I am thankful for the Ensure beverage booth that was there. I haven't had the shakes for ages, but this morning the shakes. Luckily I was able to get an Ensure shake to drink so I could shake away my shakes before the walk started. What the hell am I getting the shakes for, anyway? I got up, had breakfast, drank water. I haven't been that bad since finally weening off the Pred in April. ah well - guess it just comes with the territory now.

And now, it's the end of the day. A great day. After my March surgery, I never would have believed I would be able to do this. Come to think of it, prior to surgery I never would have been able to do this walk...

Life is good. It throws you curves, it tests you constantly, it pushes you to the end of your rope. Often it seems like there is nothing going right, everything is just too much to deal with - but then the people around you make you feel like a million bucks by standing by your side, being your life cheerleaders. And you remember... yes, life is good.

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