Friday, September 21, 2012

35 and so, so wise from new lessons.

Hello internet friends....
It has been some time. I have had a lot going on and really have had nothing I felt would be slightly entertaining.
I turned 35 the other day. I have stopped counting. I will be 35 next year too. I have found my first grey hair. The fine lines around my eyes are more prominent than ever, despite my religious use of creams and potions and ALWAYS wearing sunglasses so I don't squint. I also wear them because I feel very incognito. You know- I have to throw off the paparazzi that stalk me. ;-)
I don't really like getting older. Well, I don't mind the number changing, but I'm not ready to be old. I'm not ready for anti-aging creams and fine lines. I'm only 25, 30, 35.... And boom, there they are. It doesn't help that I feel like I have lost a few years to UC. I lost my early 30s. To me those are prim years. You are not 'just' in your 20s to those older than you who still see you as a child no matter how much you've accomplished. And you are still far enough from 40 to still be a little stupid, a little crazy and not have people look at you like you don't have your life together because you are 40. You are close to your 20-something body. Your 20-something skin. Instead of having all that wonderful stuff, I had horrible skin and weight gain from prednisone. Moon face, hair falling out in clumps, arthritis, blood transfusions, 10 pills a day and a dozen or so other side effects from the many different meds I was on to try to get this shit (shitting?) under control. Perfect prime real estate of life in the toilet. Down the toilet. In more ways than one.
I know there are people older than me who will say I'm ONLY 35...I know, I know.... but in this moment I want those years back. I can't count how many times I told my daughter 'No' because I was in too much pain, or too much fatigue to play with her. Or that I couldn't go to the park because I was in the freaking bathroom AGAIN, 30 times a day. Up to 45 minutes at a time. In pain. Crying. I remember moments so bad I thought I was dying. I had told my Hubs, I think I'm dying. Begging, crying, wishing it would stop. And my little girl was so disappointed. Every time. Now she wants to know if she'll need her large intestine out. I tell her I hope not. I don't want to just say no and make a false promise. She's 7 now and recalls me always being sick. Missing me when I was in the hospital all those times. Remembering I was always too tired to play. I can't erase that. That bothers me. I call bullshit. Not for me, but for her. No kid should have to deal with that crap. Here's me and my oldest at dinner the other night. She's happy I can actually go to restaurants now and not watch everyone eat or spend it in the WC(water closet). I am too. ---->


In the last few days I've learned that a delicious filet mignon is not worth it. My body is not friends with red meat anymore. My delicious and expensive Birthday dinner made me extremely nauseous for hours. I hadn't felt like that since before surgery. So, no more red meat for me. Except McDonald's because I'm sure it's not real meat and for whatever reason it's the only fast food that has never made me sick in my life.
I've learned that a real, true best friend is hard to come by. One you have 'take to the grave' shit with, and can still laugh about the stuff you did at 15, when you are 35. Laugh until your stomach hurts about how dumb you were, and then five minutes later discuss something mature, like the dumb stuff you did at 30. ;-)
On the flip, I've learned that when you go through something and feel alone for so long, and then find a group of people who know your pain (online, who you'll probably never meet), you have a bond and a friendship that is truly open and non-judging. I've 'met' such great people on some of the Facebook support pages I've found that have made such a difference. It changed me from feeling isolated in my struggle, to wanting to speak out and inform and educate. That is such a great thing. For all the crap that is out there on the internet, it is so amazing when something positive and life impacting, comes from it.
Oh! I took a new 'hidden ostomy' picture from my night out on my Birthday.

 No one would ever think... and I wear whatever I want. As we've seen in my "I have no shame" pictures.
I have also learned that it is possible to have new, wonderful people come into your life in your 30s. Moving was difficult because it is hard to develop new, trusting friendships as you get older, especially because most of the time I have spent in Texas I have been sick. Luckily, my daughter was in Kinder with an awesome little girl who became her friend, and the extension of that is I am lucky to count her mom, Samara, as a friend now. Her kids are pretty fantastic too.

While I was changing my wafer yesterday I had a thought. I was looking at my abdomen and it occurred to me that I don't even notice the stoma anymore. It doesn't jump out at me anymore. It's just there. And then I realized in 2 weeks, I would be having my reversal and my body as I had gotten used to, would change again. It will be less gutting, more putting back together. FrankenBelly getting reworked. So I took a picture. Truly, in days the stoma will be gone. And I got a little sad. I went from being horrified to being sad in a few months???!! What? It's true. My stoma is generally easy. Yes, it can be a pain in the ass (not really, because that is physically impossible) but it's easy. It's smelly when I change the bag (like, whoa) but I have gotten use to the ease of it, and the never needing to poop part of it. That, my friends, is absolute heaven after years of dying a little 30 times a day.
Anyway, I got sad because now I have to get used to something else. Another recovery, another adjustment. Possible J pouch issues, and yes, possible pooping issues.
I will fight through it though... because at this point in life I am used to things most people can't imagine. I'm used to unbearable pain. Uncomfortable tests on modesty erasing body parts. I'm USED to it. No one should ever have to get used to it. My dad was complaining about his ONCE EVERY TEN YEAR Colonoscopy. Yeah- I couldn't even say welcome to my world because I'm pretty sure at one point I had 3 in less than a year. Once every ten!? Perfect!!
So, here's my pic of the abdomen I was worried about hating and then hating and now loving----->


I love my scar. I'm going to love my stoma scar too. I'm winning the war, not just the battle. It was a losing battle until my colectomy. The second my colon came out, I won. Life has been crazy. I think this coming year will be the best I've seen in a very long time. Looking forward to some good stuff. Two weeks from today is my reversal. Let's hope it goes without a hitch. So weird. I'm only going to have a stoma two more weeks. Funny how we adapt and things that seemed so overwhelming and dramatic become normal. I have a stoma. It's normal. Wow- I'm so enlightened now that I'm 35. =)

Thanks for reading.
Gutsy is off to bed.
XO

Monday, September 10, 2012

Chaos, whirlwind days and stress.

It hasn't been the greatest few days. I think the scar tissue I have internally is causing me pain. It's very weird, and it comes and goes. Stabbing pain that is not fun. All I can figure is that it's scar tissue. Adhesions maybe? Plus, the raw skin around my stoma is back with a mission to make me miserable. Trying to change my wafer the second I feel any itching and burning that indicates leaking. The eakin seals are randomly acting differently than they have in the past. Melting quickly and coming up and out into my bag. I may have to go back to paste which isn't my first choice because of the alcohol in it and it burns like a bitch.
SO between the raw skin pain and the random internal pain, I don't want to do anything. And today is Monday and Monday's are going to suck. Dillan is home from school at 320. She has swim from 530-6 and then Girl Scouts immediately following swim until 730pm. And I mean immediate. As in, changing in the car and going to the meeting wet. UGh--- fun.. and then I find something random to do, probably with Violet, to kill time until she's done. It's just far enough away from home to not make driving home worth it. In the meantime today, I have returns to make. You know what- screw it. I'll do all that crap while she's at Scouts. Why bother Taxi driving around twice today. Perfect! Now I can be a slug and lay around. Excellent problem solving Lisa. EXCELLENT!! =)
Still am not prepared for the trip I'm taking with two kids in 15 days. Clothes need to be bought for everyone because they are in fall temps in NY. Kids have nothing yet in terms of jeans etc... It's still in the 90s here.
I am still on a hunt for a pack N Play for VIP to sleep in while I'm up there. I may need to put out a request via FB to find one. I like things to be all set when I get there. I can't stand things being hectic and chaotic. It makes me nuts. And I still have to find something cute for my Gram's party, as nothing fits me AGAIN. I change weights way too much. I need to keep an entire size run of everything in my closet. Hopefully after surgery in October my weight will finally stop fluctuating and I can get into an exercise routine. Yeah- great plan. I want to go back to work after I've recovered so we'll see. Between Dillan's activities, Mat's teaching and training, that will be interesting. Part time here I come. I guess that is probably best since I haven't had to be full time since June 2010. I will need to readjust. My body will have to readjust. Fun times ahead.
In the meantime, I'm taking an online course I need so it's not too bad with consuming time. I got a 95 on my first assignment so if that's any indication, this should go well.
Completely hit my supply amount for bags. I can't reorder until the 15th. Not smart. So I have some minibags that last like 2 hours at most and those are going fast. It looks like I'll be going back to gross draining pouches until the 15th. I need to have all my supplies ready to go because I wil be over packing them for my trip. It's not like I can run to CVS and pick up Eakin seals!! So, let's hope I pack enough and have no issues. Fingers crossed!!!
My stoma is no longer SS for stupid stoma...it is SS for shrinking stoma. This thing just keeps getting smaller. The 3/4 inch stoma opening is too big and I think that's what is causing my issues. Just requested some wafers that are smaller. Hopefully they'll get here fast! If those work I'll have to order the new size and send back the two boxes of wafers I just got shipped. The fun never ends people! NEVER!!! =)

Just wanted to take a moment to say that I really am hands down, a kick ass mom. Why you ask? Well, when Dillan was around 12-18 months, I taught her how to sake her butt on command by saying 'Shake your booty". Well, it was not a fluke, ladies and gents. Violet now stands and shakes her money maker on command when you say, "Shake your booty". Yes, I am so proud. Just beaming. ;-) Let's hope there are no poles in their future. Hee hee.
On that note- I'm going to attempt to take my little booty shaker to lunch. Mat is a workout addict and went to the gym, (A new gym. In addition to his evening training and teaching 2 days), so she's going to be my lunch date. I need someone to set a fire under my ass after this next surgery. I feel like a weakling. I hate that. And the bingo arm is out of control! Holy crap.
Ok.. I need to eat! I am a skinnyfat girl after all!
Have a great day! Thanks for reading! XO


Tuesday, September 4, 2012

Doubt and procrastination. A nasty cocktail.

I've been meaning to sit down and write for a few days but for some reason have had zero energy. So sluggish. Not sure what it is. Went off my Lomotil because I was sick of being out of it and stoned all day but my body went right back to high liquid output. My lightheadedness came back and my bags were filling nonstop and it was annoying. So- back to the Lomotil <Sigh>.
I scheduled my reversal surgery for October 5th. My surgeon said everything looks awesome. By the time October comes around I should have very little chance of adhesions and no inflammation left which will decrease the chance of complications. It should take him about 90 minutes maximum, ideally. Maybe 4 days in the hospital depending on how long it takes for my intestines to 'wake up'. That means poop to all my non-IBD friends. Guts are very sluggish after surgery, after prep. For me, most of my small intestines haven't been used since May 20th. It's going to be interesting. Very excited. I put in what should be my last order of ostomy supplies today. It will be nice to have that drawer back in my bathroom. As excited as I am about surgery, there is this little part of me that thinks, "Maybe I should just keep the stoma". Weird huh?! It's just that, I know what to expect with the stoma. I've gotten used to it. We understand each other now. I'm not pissed off at it anymore because our relationship has grown over the last 3+ months.  =) So yes, there's a part of me that is slightly intimidated by the unknown of the J pouch. I know it's going to be an adjustment. Big time. More importantly, completely inconvenient to poop again! Hahahaha..seriously. Totally weird. So I'm kinda struggling with that one. I don't know. Excited and a little anxious. Hoping it doesn't throw my life into a tizzy again. So, I'm basically counting down. It'll come at a good time too. Right about when I need to start wearing jeans and pants. Right now, summer dresses are easy and accomodate the wafer. Buttoning pants over it is tough, and searching for pants that sit low enough to be under it while not having my ass hang out is a challenge. I'm not a fan of the escaping butt crack. Trashy!!
My skin was doing so awesome... right now I'm just dealing with it being raw. It's weeping through the adhesive. I think it's because I've been slacking on blow drying the adhesive after showering. My skin staying wet under it is not creating a good environment. Ugh. So I'll be changing it daily for a few days to hopefully get rid of the inflammation. A few months ago I would have cried over this. Now- I have my life back so these little issues are a pretty fair trade off!!
I'm ok with my stoma. Looking forward to see how this J pouch works- but for now, life is good. No complaints. If this is how life is with no colon, I'm good!! And happy! =)


Loving bright color block denim for fall. So far I've bought this blue, red, green and I also got a grey leopard print! Obnoxious! Love it!! =) Now if only this hell fire weather would knock it off. 100 degrees still! Make it stop!! Ugh.
Dillan has her first swim team practice today!!! So exciting. She better love it because the check already cleared! ;-)
I'm counting down to flying to NY with the girls at the end of this month. Nervous about how Violet is going to be. I had always bought Dillan a seat when she was young and just had her in her carseat in the plane. This time I didn't and she's NOT going to be happy having to sit on laps. This kid loves to GO... Every day I get closer is a day I get more stressed about it. I'm going to be one of THOSE parents. I know it. I can already feel the eyes burning holes in me because my 14 month old is going to be a total spaz! I want to fast forward through that flight. I'm not even that stressed about my ostomy and the TSA compared to Violet. I'm sure it will make for a great story. :-/

For some odd reason, the days go by FASTER now that the kids are in school. It's already noon. It feels like I just woke up! I've accomplished nothing but a shower. I have about 5 crafts I keep 'meaning' to do but just haven't done it. Ridiculous. I'm such a procrastinator. Not sure why... nothing I have to do is stressful or causes anxiety. I've always been this way. Even with easy stuff. I'm an oddball.
Hope everyone had a great long Labor Day weekend.

I stumbled across this quote from Roald Dahl and I'll leave you with it---->
One of my favorite childhood authors.
"...if you have good thoughts they will shine out of your face like sunbeams and you will always look lovely.” 

Thanks for reading. Feel free to share! XO