Monday, December 31, 2012

Some lasts of 2012...

Today is usually the day that a lot of people complain about how horrible this year was and they can't wait for the next. I could easily be one of those people. Instead, I think this year was awesome. I got gutted and got rid of a nasty rotting organ that was ruining my life. Many people would probably put that on their 'con' list for 2012, but not me. It is numero uno on the 'pro' list. Getting though that surgery and the following recovery feels like a huge milestone for me, not a setback. This time last year I was in such a different place physically, emotionally and mentally. Now I'm about ready for anything! Bring it on 2013.... you've got nothing. I was lucky to have been healthy enough post surgery to be able to fly to NY and celebrate my Gram's 90th birthday. I got to bring both of my girls and spend time with my best friend and her girls.  Looking back on this year I can say that I, hopefully, saw the last of the following; blood transfusions, 4 hour IV Remicade infusions, Prednisone pills, hospitalizations, blood loss, daily pain and fatigue, joint pain, hair loss, ... I could go on. There are a lot of 'lasts' from 2012. One thing that is definitely following me is my medical bills. I'm down to about $1600 on what I owe for my last Remicade infusion! I can't explain how great it is to not have my body pumped full of immunosuppressants anymore. I'm not perpetually sick! Yaaahoooo! I no longer spend time wondering what the hell all that crap was doing to me!! So great!
My husband told me last night that he is happy to finally be seeing 'me' again. That the last year and a half I've been a different person going through all of this and the last few months, little by little, I'm becoming myself again. That's the hardest part of all. Knowing that the people around you are suddenly dealing with a stranger. I'm sure Hubs had many days where he looked at me and wondered where his wife went. Oh- I know..I was either in bed, at the doctor's or in the bathroom... Living the life!! It was nice, and sad, to hear him say that to me. At least I'm bouncing back. I have big plans 2013- you hear me?? I have races to run, Anatomy classes to ace, work to find and maybe if I'm lucky, some new places to visit. For the most part, this year will be hard to top. I conquered some big hurdles. Without hesitation.
I'll be starting out 2013 by getting to write a special blog piece for another Gutsy girl's blog. I can't wait. I've almost finished with what I am submitting to her. I have to write about what makes me a gutsy girl. Keeping the entry focused and concise is tough because it's not my blog, I have so much to say and I want it to be great. I'll post the link when it's up.
So  to everyone out there who had some trying times this year, chin up... the things that challenge us and test us don't have to be negative things. We learn from them, we grow, we adapt and sway. As long as you take away from those challenges and make yourself better, they aren't negative. Let your failures and your hurdles inspire you. Drive you to do a little more, a little better. You will never have a year without hardship. It's just up to you to see them as something bigger than 'that awful thing you went through'. Don't be quick to label your challenges as horrible. Without those low moments, you can't appreciate, or even recognize the highs. Sending love to everyone this NYE. Wishing you smiles and laughs and a safe start to 2013. Catch ya on the flip side. XO

Friday, December 21, 2012

Bionic feet and crafty wonders...

Well, I kinda sorta made the wreath I saw on Pinterest. I did run out of bulbs halfway but I think I did an ok job with what I had. Metal coat hanger that I scrounged from a friend, and some bulbs I bought that never really went with anything but I couldn't throw out. Here is a pic of my ring o'balls.

It's not as I had envisioned it but it works for me. I may rearrange some bulbs if I'm feeling ambitious but probably not. Let's hope the Grinch that stole my other one doesn't strike again.
I finally got all the wrapping and steri-strips off my foot from surgery. I haven't washed that foot since Thanksgiving weekend. Gross. I can finally shower without a bag sealed around my foot.
Here's a before and after.


There's still quite a bit of swelling and my range of motion isn't even close to 100% but I'm getting there. I have to exercise my toe a few times daily to get flexibility back and stop scar tissue from forming so I can use my foot properly. It really hurts to bend a toe that doesn't want to bend. I have two screws in there. So I am bionic. I still hate feet. That won't change. =)

In other news, I am full on raging about doctor's and insurance companies. I am so over it. My foot surgeon used an assistant surgeon. Well, said assistant is out of network. Apparently, I was supposed to ask my surgeon's office if the assistant was in network prior to agreeing to surgery. Would you have asked knowing your actually surgeon is in network?? I didn't even think about it. Why would I? So apparently I owe this assistant surgeon that I had no input about, $1300. Yeah right.... I'm not paying it. Such bullshit. I am so DONE with doctor's and meds, and insurance claims and blood work, and appointments. DONE! I just hung up with my insurance company and apparently I'M the idiot for not being more intuitive that I should have asked. Did I mention I called my insurance company prior to surgery and asked about an assistant surgeon being covered? Oh yeah. I was told I have 100% surgical coverage that covers anyone who needs to be in the OR. Ok... swell... let's move ahead. Now, AFTER THE FACT, the assistant surgeon isn't lumped into that. My cheeks are hot. I'm appealing it naturally, but I'm sure it won't matter. I was having a perfectly fine day until this happening. I'm sick about it. But can you imagine if I had asked and they said, oh the guy who assists is out of network and I said I didn't want him there? I probably would have had to find a new surgeon. It's so ridiculous I could scream.
I'm going to go outside in the cold and look at my crafty ring o'balls and hopefully snap out of my rage so I can call my surgeons office and not sound like someone related to Honey Boo Boo. I'm so mad the F bombs would be flying. So I'm going to take pause. I'll let you know what happens. What a crock of shit.

Saturday, December 15, 2012

Fa La La La La....

Well, the other day I started pulling out all the happy, shiny decor that comes with the holidays. I hung my HOMEMADE wreath on the front door, admiring it momentarily and moved on. I wish I had taken a picture of it. It turned out pretty cute for about $15 in craft supplies. Well, low and behold someone stole it right off my front door in the middle of the night. This left me pretty pissed for a variety of reason. #1- it's a holiday wreath and you stole it- could you be anymore anti-holiday spirit. #2- it's worth $15 and took me 10 minutes to make. Of all the really nice wreaths, you took mine? #3- if you really liked it that much, had knocked, I would have shown you how to make one. #4- YOU STOLE A HOLIDAY WREATH.
WEll, I'm over it (not at all) so I have decided to make a new wreath with a tutorial I found on Pinterest. I've actually done quite a few things I've found on that site. I like it and waste lots of time on it. Anywho- the tutorial seems easy peasy- a wire coat hanger (a la Mommy Dearest), some basic bulb ornaments and a bow to accent. Simply mold the hanger into a circle and load it up with what you want, how you want..twist the ends back together, cover with bow and hang. I can handle that, right? We'll see. I'll update how it turned out. I am a bit apprehensive about hanging another one. What if I have some neighborhood enemy I don't know about, who is dead set on stealing my decor? Doubtful, because my harvest wreath didn't go anywhere and neither did my gold light up trees I had near my front door. So maybe it really is a form of flattery.
I'm also going to make a new tree skirt out of a round table cloth. Yes, who woulda thunk it. Thanks again, Pinterest. You are the best.
I like a decorated festive house for the Holidays. I think they make the house feel warm and inviting. I don't have extended family out here, and no one is coming to visit for Christmas so I think the decorating makes it seem real. Christmas was always very busy growing up... going from my dad's family, our house, friends houses, my stepdad's family... Sometimes multiple houses in one day. All houses filled with people, and food and laughter. Here in Texas it's Hubs, me and the kids. Part of the day the two older kids go with the exes. The house is empty, quiet. It tends to just feel like an ordinary day. It makes me sad. I wouldn't mind a houseful of people for next year. We might not have enough bedrooms but we have space. I don't know. I know I've been in a funk the last week or so with my own stuff and thinking about a quiet Christmas eve and day is making it worse.
My tree looks pretty and already has tons of gifts under it. Daughter #1 is very excited. She keeps counting presents.
OK- I am off to gather ornaments and then scrounge up a wire hanger. I will let you know how this craft works out. Have a great weekend. Thanks for reading. XO

Thursday, December 13, 2012

What's left behind..


So last week was Crohn's and Colitis Awareness week and if you are friends with me somewhere online you couldn't miss it because I didn't shut up all week. I try not to be overkill about what I've been through on FB or Twitter (Hence the blog. You can choose to hear it or not), but the fact is I have to be. I'm not whining or crying about it. I certainly don't want you to feel bad for me, and I am not resentful of normal people. It's just that people don't know what the IBD world is and it's upsetting to me. As much as I have no idea what chemo is like, I know about cancer and what the treatments do. Most people have no idea what Colitis or Crohn's is, much less what we go through, what our meds do, what the worst of our symptoms are. Yes, we have abdominal pain. It's not a tummy ache. It is extreme, bring you to the floor pain where you really think you are dying. And many times if the internal bleeding from ulcers is bad enough and you don't get transfused, you will. I would rather go through child birth than be in a flare. The blood loss is indescribable. It's scary. You literally look like a crime scene in the bathroom and it feels like your insides are ready to fall out. It's hard dealing with something and not have people not only not understand, but be completely ignorant to what it is. But enough about the gory stuff.
All last week I had an internal battle of happiness with myself. I have been on some serious meds since 2009 and they've altered me on the outside. My hair is different because it fell out in clumps and grew back so many times. The prednisone gave me moon face a handful of times. It's changed my face. I can't 100% say how, but it's there. I know I'm also 3 years older which isn't helping, but I look different. I'm not happy. I have never been a great beauty or anything but I was perfectly happy with what I saw in the mirror everyday. I don't look like anyone but me. And that's fine. But now I don't look like me. Then there's the havoc on the body. I'm currently 110lbs. I may as well be 210lbs. I hate how I look. I look at 110 and it feels gigantic compared to 95 or 100lbs. I can't get it out of my head. I looked like shit at that weight but compared to that, 110 is huge. Muscle tone gone from dropping weight so fast. The shape of my body is completely different. How I store fat and where, has changed thanks to the wonderful steroid Prednisone. Flares made me drop weight like you wouldn't believe. I could lose 10lbs in a week. I stopped looking at a scale because it was unreal. So, all that weight is falling off, muscle disappearing because I am too weak to use them. Then I go on high doses of steroids to stop the flare. The steroids make you hold water, distribute fat differently all the while giving you a nonstop appetite. Starving all day. So now I can finally eat, and the weight packs on, unnaturally, because of the steroids. Then I taper off and after months, the weight comes off, leaving a body that looks like a strangers. My scars don't bother me at all compared to how much the composition of my body has changed. Don't get me wrong, I may call myself a fat ass at least once a day, but I eat and don't actually act on it. I know I have developed a body image issue from the weight fluctuations. I had no problem eating McDonald's today. Food only stays in my body about 12 hours anyway so I don't gain anything. Hubs actually joked saying he can imagine models finding out how I don't gain weight without a colon and having theirs removed for vanity. It kind of stuck with me. Before I got sick I never realized how much your gut health affects everything.
As I sit here in my size 3 Levi's, bitching about my weight, I'm sure some of you hate me. That wasn't the point of this. I know I'm thin. I'd take some weight to have my 'old' body back. My hipbones stick out weird now. My ribcage too because there isn't a transverse colon across the bottom. Want to know what's horrible. My period cramps. I haven't had any since before I had Daughter #1. Now I feel like I'm 14 years old again, curled up and in misery. Well, all my baby maker bits are slightly in a different spot because my colon is not supporting them anymore. The colon only has millimeters of connective tissue between it and all the cash and prizes. That's why a colectomy can affect sex, conceiving and all that good stuff.
It's a long road. You think when you get a diseased part of your body removed you will just resume your life. You will feel a sense of relief and just pick up where you left off. It's not so simple. What this has left behind for me is still a struggle. It has switched to a more mental/emotional struggle than anything. My body heals faster than my psyche. I look and see something much different than everyone else. I always joke that I'm a fat/skinny girl. It's hard. It's hard to move on. It's hard not recognizing yourself over and over again. I'm hoping I've finished morphing. I seem to be holding steady. I don't seem to gain weight because food isn't in my body long. To be honest, if I start to, it's going to be really hard to deal with. I subconsciously wait for my jeans to be too tight. I wait for something else to change. My hair is still filling back in, although it's never been the same. I'm now considered healthy, but what becoming healthy has left behind is something else. This has taken me three days to write because I kept losing it while typing and couldn't see. Being sick was so much more than my guts. It changed all of me, inside and out.

Wednesday, December 5, 2012

WEGO health activist award nominee

I got nominated!!! My blog is nominated for Rookie of the Year!!! WoooHoooo!!!
This means a lot. I've put a lot of emotion into writing this with the hopes to help others who suffer and to raise awareness. Please take a moment to click and endorse my blog.
Thank you to all my readers!!!

http://badges.wegohealth.com/endorse-me?referrer=lisapolley

Tuesday, December 4, 2012

Crohn's & Colitis Awareness week.




Hello out there. Starting on the 1st, it's Crohn's and Colitis Awareness week. I'm pretty sure we need a month because it continually blows my mind how people have never heard of either disease. 1 in 200 Americans has IBD. That's nothing to ignore. That's a pretty solid number. This is the reason why I basically don't shut up about my life and I'm online and talking about my guts, and my aches and pains nonstop. We, the IBDers, can't shut up. We have to be a pain in the ass and keep telling our stories.
This week has been a pretty rough week. I'm 8 days out from foot surgery and it still hurts pretty bad so I'm still taking Vicodin for it. Well, how many narcotics can a 110lb girl take a day? My usual routine is Lomotil twice a day to slow my system down(narcotic as it is related to demerol), and Flexeril(muscle relaxer) for some continuing spasms in a delicate area that are very painful. Sooooo- yeah... Taking some Hydros on top of that is probably a recipe for disaster so I quit the Flexeril and the spasms came back. But if I take that with the Hydros I go into a coma. I also cut my Lomotil in half which has triggered me cramping and going to the bathroom nonstop. It has a been miserable but I think I finally got a combo figured out that is working. <sigh>
I'm only 9 weeks post Op and I guess I think I'm Wonder Woman and should be just recovered and normal and moving on. This week taught me I'm far from it. I know it generally takes a year for the Jpouch to get working correctly and adapt but here I am in 9 weeks getting pissed because I'm still having issues. I'm nuts. I'm slowly coming to realize I am never going to be "normal". All of you who have known me for years are laughing because you know I never was! But seriously, I guess I had a teeny tiny delusion that I'd get put back together, and the only way I'd know about all these issues were from my scars. Uhhh- yeah. Nice one Lisa. Dumbass. I will forever have issues with food. There will always be things that I will need to avoid, or will give me pain. I may always have scar tissue pain. I may develop adhesions later and they cause pain. I may develop pouchitis and be sick from that. These are all things I know. I do. I just have to remember it daily and be conscious of it. I have to stop myself from overdoing it. I have to avoid things I REALLY enjoy, like salads, and filet mignon.
I will never be a normal person. Technically, I no longer have UC. I kicked it's ass big time. But I am forever an IBD warrior. I may always have issues. I wouldn't go back. Four years ago my symptoms started. I ignored them. I was recently separated and going out a lot. Working a lot. Sleeping little. I blamed them on my lifestyle change. I didn't have time to be sick. I was running nonstop as a newly single mom, running a store, having a social life again. By the beginning of 2009 my symptoms got worse and weird. I pushed through it still. I don't know if I had gone to a doctor sooner if it would have mattered or not. I think no matter I was heading toward getting gutted. I'm happy I went through it. I've learned a lot about my capabilities. I'm a strong bitch. I overcame. I fought even when every cell in my body wanted to collapse and stop. I'm happy it came to surgery too. No more biologics being pumped into me. My hair is pretty much grown in from all of it falling out from steroids. The meds always scared me more than being gutted. Truly. I don't think there is anything that can scare me anymore.
Back to Awareness week! Purple is the awareness color for IBD. I've made sure to rock my purple daily. Here I am for the week. ;-) Enjoy.
Listen to your bodies everyone. You know when something is off, and not normal. Don't wait. It won't hurt to get tested or checked out. It can hurt to wait. Take care of your body. Be your own advocate and cheerleader. Speak up about your journey and battles. You never know who it may help.
XOXO
Day #1. Great Bowel Movement shirt, CCFA bracelet, Girls w Guts bracelet
Day #2 Purple nails.

Day #3 I had a rough couple nights.  I was very crabby.  Still in purple. 
Today, day #4.Weirdo! No bangs. I hate me without bangs now. Still exhausted. Up til 4am.