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Jackie

ROLLER DERBY!! Hi, I'm fresh meat!

So I started roller derby. I know, right?! After much talking and about a million questions to my good friend Christy over at Ostomy on  the Track, I finally decided (after almost 10 years of wishing) that it was time to start training and work towards getting placed on a team.

Continue reading “ROLLER DERBY!! Hi, I'm fresh meat!”

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Now Its Raining Cats and Depression

A few months ago I wrote about how it felt like it was raining cats and bowel problems. It felt like everyone I knew was having some issues with their IBD/jpouch/Ostomy. Like for whatever reason, the IBD gods were smiting us all. It sucked.

Well now its raining cats and depression. I have countless friends that are going through deep and severe bouts of depression right now. Myself included. I’ve found that when I get depressed, like this, there are very few things that I want to do. Most of them involve self medicating and sleeping. Wallowing on my couch has been a favorite activity for the last month. And then talking to my other friends about why they are depressed and if/how we can help each other.

What I’ve learned about having depressed friends is that it is a blessing and a curse. Its just like having other chronically ill friends. Sometimes you can relate to each other so well, that its incredibly comforting know that at least someone out there kind of understands why you haven’t showered in 5 days and are ok living on a box of cheeze its for an extended period of time.

But other times, you tend to bring each other down and its a slippery slope. My friends and I try to check in on each other daily and if I’m having a good day and they are having a bad day, I’ve noticed my feelings can change. And the same vice versa. Sometimes I have to tell certain friends that I can’t be their support network right now because I am not strong enough in my own life. Being depressed almost always revolves around some level of being selfish. Maybe you’re ignoring your friends calls. Maybe you cancel plans. Maybe you’re not a listening ear when someone else needs it. I think all of that is fine as long as you just give people a heads up on why you’re doing it. I have told people lately, that I’m have a really difficult time in my life right now, so I find myself retracting and isolating, so please don’t take it personally. And that’s all I have to say.

Some days are ok. Some days I wake up already hyper focusing on negative issues and things that I can’t change. Those days I take a lot of Xanax and when I get home I have a glass of wine. Is this the “right” way to deal with it? Nope. But right now sometimes I have to just shut my brain off, and that is how I choose to do it. Depression is a weird thing that is unique for everyone. All that I really know is that its very difficult to crawl out from it and that a lot of people I care about are down in this hole with me.  But I am doing what I can to crawl out, step by step, day by day. I take my anti depressants. I take my Xanax. I go to therapy. I talk to my friends and I try to set small daily goals so I can feel like I accomplished something. Sometimes that goal is just getting the mail but at least I did it.

Just know that many of us who are chronically ill deal with depression in varying degrees. Mild to severe. Frequent to periodically. I know that it does get better, even though it feels awful right now. It does. It will. In time.

 

 

 

 

 

More Adventures in Dating – Guest Post

RedGlassHeartIMI’ve been following Jackie’s blog for awhile now and after her recent post about dating with jpouch and the negative comments she received after it went live, I felt the need to step in and give my perspective on dating as a permanent ostomate.

From what I’ve seen and heard, many ostomates, male and female, are concerned about how others perceive them. We worry that our appliance can be detected under our clothes or that if people see our bags, say if we wear a swimsuit or something similar, then we’ll be labeled as “abnormal” or “gross.”  For those of us who are single and interested in dating, we have additional concerns: Will we be seen as unattractive? Will a prospective partner not want to have sex with us? Will dates be freaked out?

Speaking from my own experience, I have never once (that’s right, not a single time!) had a date or sexual partner react negatively to my ostomy. One guy knew I had one because of our mutual friend. When we became intimate, I asked him, “so you really don’t care that I have an ostomy?” and he responded, “why the hell would I care about that? You’re beautiful.” Another guy I met online and after a few dates I told him about my ostomy. His two questions? Would sex hurt my ostomy and did my vag still work. When telling another partner, he just held my hands and said “an ostomy isn’t who you are, it’s just a small part of you, and regardless, I want to know all of you.”

Maybe my experience is abnormal, I’m not sure. But I do know this: when I tell or talk to people about my ostomy, I come across with confidence. I don’t make a big deal out of it, mainly because I don’t see it as a big deal. Aside from the three people mentioned above, I’ve been on multiple dates with others whom I did not become sexually involved with, but who certainly tried their best to get in my pants – all the while knowing I have an ostomy.

I don’t know how other single ostomates tell dates or partners about their ostomy, but I like to keep my approach simple. Once I find an appropriate and casual segue into the conversation, I say something like this: “So I got really sick a few years back, have had some surgeries to make me better, and one of them saved my life. The result of that one is that I now have an ostomy. I don’t think it’s a big deal and neither should you, as it really doesn’t affect anything.” Most of the time my date won’t know what an ostomy is, so I tell them very briefly and will sometimes show it to them so that they can see what a small part of me it is. The typical response? “Is that it?” or “That’s all it is?”

I’m not trying to downplay the negative experiences of other ostomates in the dating world as I’ve heard stories of dates reacting poorly, but I do have to wonder how the topic is being talked about or explained and whether the ostomate is coming across as confident or insecure. Perhaps a few readers can chime in and detail their dating adventures instead of just attacking Jackie for not understanding the permanent ostomate’s experience since she has a j pouch? I’d be interested in understanding what other ostomates are going through….

My adventures in dating

So I’m dating. Well, I started dating. Let me rewind.

Dating is a HUGE topic in our community because there is a lot of fear around disclosure and acceptance. In the past I’ve written about dating and my opinions, but I have never actually dated since I was diagnosed with IBD. So all of my theories and advice were pure speculation, even though I still consider it solid advice.

So now I have legit experience in the dating-sphere, and I’d like to share it with you guys. I approached dating cautiously, after all the world is full of crazies. I haven’t actually dated…ever. I was in two very serious relationships for the last 13 years so not only is dating with IBD/jpouch scary, dating in general scared the literal shit out of me. I realize that I tend to talk about my butt to anyone and everyone who will listen, but I also realize that is not great first date conversation. Or at least that’s what I’ve read in forums and other blogs. Hell, I think that’s the advice that I gave in the past.

Here is what I realized…I can’t not talk about my butt. First dates, and even the predating period, it took me a matter of days, if not hours to spill the details on my defunct digestive system. I literally can not stop talking about my butt, and my blog and Girls With Guts. If this was the test, I failed with flying colors. Even if I wanted to hide my history,  if just for a few dates, I can’t. My name and face is plastered all of the internet with “butt disease” slapped right next to it. I have positioned myself in a place where my future beau can read details about how I poop, see my fat face pictures, and view graphic photos of my body when it was at its worst. This is my life, there is no hiding it, there is no going back. I get that is scary for potential suitors, but whelp, this is me.

But you know what…not one of the guys I was talking with cared. In fact, many of them talked with me about their own health ailments and it made me realize a few things about the world. First, that many of us are all giant health disasters, and also that people like and fall in love with the person, not their medical records. I’m sure there are people out there who might run screaming from me on a first date, but frankly, I never found that guy. Not once.

In fact, I found the opposite. I have found someone who cares about me because of what I’ve done with the hand I was dealt. Someone who understands and can relate. Someone who I think is really great, and who thinks that the sun shines out of my ass. Actually, I’m going to ask him to guest post so he can tell you himself what he thought when he met me, learned about my butt disease, and MS and why he didn’t run screaming.

So don’t let IBD scare you away from dating. There a million reasons why someone can like you, or not like you, and frankly IBD is probably not one of them.

Eatin' Paleo

Totally realistic image of a cavewoman
Totally realistic image of a cavewoman

I made the choice about 2 weeks ago to switch to a Paleo diet. Since diet is such a common topic among my Butt Buddies I figured I’d let you in on what I’ve been doing. So here are the basics.

What is Paleo?

Paleo is also known as the “caveman” diet which basically means you only eat things that cavemen could have eaten in their time. Seem rudimentary doesn’t it? Trust me there is no pointing and grunting involved and if you’ve ever tried eating Gluten Free its very similar.

Here are the very very basic cliffsnotes:

Good:

Meat

Nuts

Veggies

Fruits

As organic as you can get. All those hippie terms are now your BFF.

Things that are organic, locally grown, grass-fed, free range, no GMO, ect.

Bad:

Dairy (except eggs)

Grains (ALL grains)

Legumes (peanuts, and chickpeas, ect)

Sugar

Fried food/fast food

Processed foods

OR you can use this fancy info graphic to help you make your choices. (Click to view larger)

 

Paleo-Infographic

So that’s it pretty much. Now go and stuff your face with meats and veggies. Well initially this sounds awful and quite frankly scary from an IBD standpoint. The basic theory on the Paleo diet (or lifestyle I prefer to use, because “diet” insinuates that its temporary), is that when cavemen were bee boppin’ around, humans didn’t discover agriculture yet, and because of that we didn’t eat grains. Actually grains are pretty difficult for out bodies to digest, those of you who are GF already know this. And grains are one of the more processed things that we eat daily, and things we are lead to believe are “good” for us. The reality is a single piece of bread is very processed, and most grains honestly do not hold much nutritional value. Sure there is the whole grain argument, but I’m not here to argue, I’m just explaining Paleo.

Why can’t I eat peanuts?

You are free to eat nuts, as long as they are not processed. So that means no roasted nuts, unless you’re fancy and roast them yourself. That means no salted cocktail nuts. That means no peanut butter. Wait…why not peanuts? Because peanuts are Legumes, not nuts silly.

Why not dairy?

Again, cave folk didn’t use dairy products. Hence neither do Paleo lifestyle people.

Ok so what CAN I eat?

You can eat as much meat and veggies as you want. Some fruit but be careful because it has a lot of natural sugar. You can eat eggs, and I eat a lot of them. They key is eating the cleanest food you can. The real complaint about Paleo is the money. Grass fed beef and free range chicken are pricey. Organic fruits and veggies are expensive. But I had this epiphany the other day where I realized that I’m willing spend a boat load of money on fun, and material things (I use the term “boatload” loosely), but not on what I feed myself. What the hell is wrong with me?  This is a personal choice, but after what my body did, and the great comeback it made, I’ve chosen to reward it with eating the cleanest food I can find, even if it costs me a damn fortune. My body has 1,000 reasons to fail and crumble, and I won’t let the food I eat be one of them. Also baked goods and deserts are not out. You can use almond flour, or coconut flower for a lot of baking needs. Frankly I cook a lot more, and I have eaten some delicious stuff.

How the hell am I supposed to eat so many veggies? I have a butt disease.

This is going to be the deal breaker for a lot of people. I can already notice that with my increase in vegetable intake that my bowel movements are different. Many are thicker, which makes pooping a little more difficult, but frankly has slowed down my system enough and its kind of nice. And its all about the veggies you can eat. If you can’t do celery, do freaking eat celery. I roast a lot of them, cook them in a pan, ect. I do not eat most of them raw. When I notice things are not moving as nice as I’d like, I use some apple juice to get things moving. I’m only 2 weeks in, but its going well. I slowly transitioned and that helped my system adjust. I’m still having a hard time breaking up with sugar, and I still crave it a lot but I have found a piece of fruit or a small amount of organic fruit juice helps to quench the craving and then its gone.

So how do you feel?

I think it’s really too early to actually say. I’m still fighting sugar cravings but they are lessening. It could be coincidence but I have slept much better the last few days, and I swear I have more energy. I don’t ever feel like I’m dragging ass anymore. When I wake up in the morning, it never feels like a bus hit me anymore. My stomach and intestine have adjusted quite nicely, and nothing I have eaten has given me any issues. I eat meat, veggies and fruit all day now. I eat nuts a lot too but I make sure to CHEW CHEW CHEW. A single nut at a time until it’s a paste. And I’ve lost 2 lbs.

What else do I need to know?

Are you working out at all? If you’re going to do Paleo you need to be doing some kind of activity, because all the protein you’re stuffing into your body will just sit there and turn to fat if you’re not working it out. If you are, it will help turn it into lean muscle and also to help burn fat.  What I like most about Paleo is that you can customize it to work in your life. If you wanna be crazy Paleo person you can follow the diet exactly and maybe go a little nuts along the way. For me, I do it as best as I can, and know that there are some vices I won’t give up. I like to drink Cider (Angry Orchard, or Strongbow). AO is Gluten Free but its still got a boatload of sugar….every once in a while. I”m ok with that. I lightly salted my roasted veggies with kosher salt. Some people can’t give up cheese. Some people can’t give up diet Coke. Thats fine. The goal is not to make you miserable, its to make your life healthier and if 95% of what you eat is good, clean food its probably an improvement from what you eat now. Frankly, giving up a lot of the grains and things hasn’t been that hard. Sure, I love me some pasta covered in cheese, but I can live without it and it doesn’t make me sad, but you better believe when my Mom makes an apple pie I’m eating it. And then I’m going to the gym. Also when it comes to eating “clean” meats, I have learned it’s not only that they are expensive but they are hard to find. If you can’t find it, or can’t afford it, its ok to buy meat from Kroger. Again the goal is to eat as clean as possible, whatever “possible” means for you.

Also it really works for me because it lets me eat when I want and as much as I want. Its not horrible to skip meals, and it doesn’t mean tiny portions. It means if I don’t eat lunch, fine, who cares. A lot of the food can be pre-made, and frozen, so all you have to do is thaw it and then stuff your face which works well for me. I pre-cook a lot of meals and then I don’t have to worry about “whats for dinner”.

Here is another info graphic with some more info:

The-Ultimate-Guide-to-Eating-Paleo

 

The power of playlists

Team Challenge update: I started running again this week. Thursday I did three miles and I thought I’d die. Seriously…I couldn’t breathe, and I couldn’t run and everything hurt and everything sucked. I just kept feeling like a giant failure. So this past Saturday was our last TC group training session. We were slated to run 8 miles but my trainer suggested that I limit it to just 6 because I’m still nursing the knee. And I was all “Oh really? Just 6 miles? Oh right considering the 3 that I ran just about killed me”. I had to wake up at 6:30 in order to get to training on time because its an hour away. The whole drive there I was just doubting myself. I felt like people would be judging me, and that I was totally just fooling myself. When I got there it was 32 degrees outside…and super windy.

Then it started snowing.

And I was all “I know, God. I got it, I SHOULDN’T RUN EVER”

I was getting dramatic, but the truth of the matter is that I was and am scared about the 1/2 which is now almost exactly a week away. Almost to the hour.

So I start walking..and the wind was blowing my face off and I was angry and freezing balls, so I start running so I don’t start to lose my limbs in what felt like the Arctic Tundra. And I ran. And ran. And ran…and I ran almost all of that 6 miles without stopping.

It was slow. But I did it, and it only hurt a little. And I felt good about it because I remembered how to breathe and how I like to run. I remembered my stride and I started to have fun again. I enjoyed running again on Saturday and a large part of that is due to the little hidden messages I put into my play list.

My running playlist only grows. I don’t take songs off, just add them. The current playlist is 30 songs long…and when it starts to repeat I’m not mad. So here is my current playlist and a few notes about why certain songs are important. Also, I shuffle it everytime so this is in no particular order.

 

Thunderstruck  – ACDC

Bad Romance – Lady Gaga

Ocean Avenue – Yellowcard

This Love – Maroon

Life Of A Salesman- Yellowcard

E.T.-  Katy Perry (This song often helps me find my pace. It seems to be the right BPM for me)

Comeback Kid – Sleigh Bells (Never fails that the iTunes gods always have this one play right when I need a second wave of energy)

Harder To Breathe – Maroon 5 (This song helps me remember to breathe. Always makes me smile too when I get all angry that I can’t breathe)

Fighter – Christina Aguilera (What woman doesn’t love this song? This song always makes me feel like I’m a total bad ass. You know in the beginning she says “After all you put me through, you’d think I’d despise you, but in the end I want to thank you because you made me that much stronger.” And this is always my little running pep talk to myself about IBD. The things I tell myself while running get totally absurd.

Independent –  Webbie Ft Lil Boosie (This song is a jam. ‘Nuff said)

Go Your Own Way – Fleetwood Mac (You guys know that I clearly love this song)

Way Away – Yellowcard 

Breathing – Yellowcard (See a trend here about reminding myself to breathe correctly)

Dance With Me – 112 (There is clapping in this song. I always clap with it. It makes me laugh and keeps me happy)

Twentythree – Yellowcard

Pressing On – Relient K (Never fails…when I get angry or I’m ready to give up, this song comes on. Almost always in the last few miles of my run.)

Believe – Yellowcard

Fixed At Zero – VersaEmerge – The verse of this song goes like this:

There’s a vulture on my shoulder
And he’s telling me to give in
Always hissing right in my ear
Like it’s coming from my own head
It’s got me mixed up
Trying not to give up
Tell me there’s a way to get out of here
Oh, fixed at zero!

I never really thought a lot about this song, until one day I was having the worst run ever. I kept telling myself how hard it was and how much I was not cut out to run long distances. This song came on in one of those moments…and it threw it right in my face that my biggest competition is myself. I am the only one who has told me that I can’t do this. This song is an attitude check.

Miles Apart – Yellowcard

Who I Am Hates Who I’ve Been – Relient K (This one just has a good message)

Let Me See Your Hips Swing-  Savage

TiK ToK – Ke$ha

to da window,to da wall –  Lil Jon

Wall To Wall-  Chris Brown

We No Speak Americano – Yolanda Be Cool & DCUP (Good song whenever you need a pickup or are feeling tired)

7 All I Do Is Win – DJ Khaled (ft. Ludacris, Snoop Dogg, Rick Ross & T-Pain) (All I do is win. Bam. Also…my hands always go up when that part of the song comes up. I’m a run dancer.)

Belly Dancer –  Akon

Dance In The Dark – Lady Gaga (My favorite Gaga song)

 

So a lot of the songs on there are just the right BPM for my pace. It took a while to find the right ones that weren’t too fast or too slow but this playlist works pretty well for me. I also did not put any of those songs on there (except Fighter) for any purpose other than I liked the songs. It was from listening to them over and over while running that it was some kind of fate that they found their way onto my playlist and always seem to play at the right time.

Are you going to Vegas with TC next week? If so I’m going to try to organize a big photo with all the internet friends I’ve made!

Thanks for always reading and supporting me.

 

 

Post for The Gutsy Generation

I have been asked many times why I am an advocate or why I spend my free time and money on raising awareness for IBD. I have a long winded, drawn out answer for this question and depending on my audience it can be really inspiring and technical, or loaded with swear words and jokes. I like to think that I understand my audiences. I have this same strategy when people ask me what a Jpouch is. I have loaded responses ready to be verbally vomited into the ear canal of the unsuspecting question asker. Depending who asks, they will either get my medical jargon-ed response, or something about how my colon is gone, yadda yadda, new internal plumbing, yadda yadda, wham bam poop chute answer. I’m really quite eloquent with words.

Read the rest of this post at The Gutsy Generation!!

Guest Post: FAP Explained

Something that I don’t know enough about is FAP. So many IBDers and people with FAP cross paths due to ostomies, but I never actually learned about FAP. So….here is some info on FAP.


Currently looking for someone to do a guest post on their experiences with FAP.

What is the best nation?

A Donation.

I heard that from a homeless guy in downtown Detroit once. I thought it was clever. Clever enough for a buck.

I was asked recently if I take donations for my site. I didn’t…but not because I’m against money but because I never thought about it. So I set up a donations button through Pay Pal and slapped it on the right side column of my blog. Now lets be clear, I am not ASKING for donations. In fact, I think that sites like mine that ASK for them is kinda weird and I’m all “what the hell are they spending money on anyway”.

It does cost money to run this site, not a lot, but since I’m living on grilled cheese as it is, it is enough to be significant in my life. So what I’m saying is, if anyone out there feels so inclined and wants to pay my mortgage, who am I to stop them? I mean really, that would be rude.

Also in case you’re wondering my mortgage is about $400/mo. So cheap, right? Wouldn’t break the bank for you at all. KIDDING.

No seriously, the idea of accepting money from strangers to pay for hosting and what not on my site is a weird thing for me and makes me mildly feel uncomfortable. But I wouldn’t have made it possible if someone didn’t ask me to do it.

Stop being all judgy. And start being more spendy. Kidding. Again.

 

 

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