Crohns and Colitis Awareness Week 2015 (12/1-12/7)

So this week is Crohns and Colitis (IBD) Awareness Week (Dec 1-7).  Most of my followers know the journey that I have been though, so I didn't want to flood their Facebook with more posts about my day to day life, but for those of you that don't know, let me give you a brief overview of how my life has gone down over the past 2 years.

Life was going good, then BAM- you're diagnosed with severe Ulcerative Colitis.  UC is an auto-immune disease that attacks the large intestine causing inflammation and ulcers.  So I didn't just get it, but I got it bad.  In and out of the hospital for months.  Strong medications and ultimately the eviction of my colon.  Temporary ileostomy for 3 months.  A year and a half with a diseased jpouch.  And now a permanent ileostomy with a completing gone rectum and anus- AKA Barbie Butt.  All of this between May 2013 and Nov 2015.

I know there are many out there that struggle for years and years, but for the that severe flare was traumatic enough for me and severe enough for me that I had to make extreme decisions.  Given all of that, I don't want this post to be primarily about my trauma.  Here are things (1 for each day of awareness week) this disease has made me grateful for:

1) Friendships.  The journey has made me appreciate all of my friends.  Those that have been there for me since day 1.  Those that have laughed and cried with me, or taken a few seconds to wish me well wishes.  People come and go in our life.  I am grateful for the strong bonds I have been able to form because of colitis.

2) My relationship.  Relationships are hard on a good day, but a light switch flipped for me when I got sick.  Relationships aren't all peaches and roses every day. They take work, and it takes courage and strength to stand my someone's side when things go wrong.  Being sick in bed actually gave us time to bond again.  We binged on TV shows.  We laughed more.  We attempted weekly movie dates.

3) My time.  Before getting sick I was so work focused.  I worked all the time.  I did anything to make an extra buck, even if it meant no sleep and more stress.  When I attempted to go back to a regular school with a higher position, I quickly learned that my time is valuable.  More money does not always equate to more happiness, so I quit and went back to my work from home schedule with much less pay.  Guess what- I get time to myself and I am learning boundaries.  Life is about balance.  Allowing time for myself is what is important.

4) My mental health........

As I was writing this I burst into tears.  Reliving my journey set me on a downward spiral of sad feelings.  Don't get me wrong, I am grateful for a lot of things, but being grateful for all of the good things in my life doesn't make the mental pain less.  It doesn't help me with my grieving process.  So the brutal truth is, even though I have so much gratitude for my friends, family, my dogs, my work, etc, I am hurting.
I am sad that my butt will never look or feel the same.
I am sad that I will forever have poo coming out of my stomach.
I am sad that I will always have to worry about my immune system attacking my body.
I am sad that this happened to me.

But I know I am strong and I know I will get through this.  I know I will one day I will be able to be grateful for everything without having to worry about dealing with the loss of a life I previously knew.

So while this post was supposed to be a positive one, it turns out the truth is stronger.  If you are struggling with a loss of any sorts, it is ok to allow yourself to be sad/angry/overwhelmed.  It's okay if you don't feel grateful for everything right now.  It will come.  On my good days, my appreciation for this disease is so much stronger because I know that it did not break me.

The Saga Continues-- scheduled for permanent ileostomy

So I posted this on facebook, and thought to myself, "I need to post it on my blog"  So here it is:

So I have been trying to not be as vocal about how I am feeling because I don’t people to think that I am a baby or a complainer. Facebook is such a weird space when you think about it because people are either going to use it to talk smack about something or use it to only show the best of their lives. There is really no true truth on facebook and yet we tend to formulate opinions about people based on their posts.

So with that said, I recently posted a ‪#‎worldostomyday‬ photo with a caption that I have been (heavily) considering going back to an ileostomy permanently. I was very vocal about my disease when I first got sick and for some of you it was like reading a daily soap. My struggles were real and it brought a lot of awareness to folks that had no idea what Ulcerative Colitis was. Then I flooded your feed with everything about surgery- the decision process, the actual surgery, and the recovery process- for not one but two of them. Some of you probably hated me and some of you were okay with all of the depressing updates.

It has been 2 years since my first surgery and 1 yr 9 months since the second surgery. Let me explain in detail what happened. The first surgery they removed the whole colon, created a “j” shaped pouch using my small intestine, and I had a poo bag (ileostomy) on my belly for 3 months to allow for the new plumbing system to heal. Things were good. I dealt with the bag, was fine, felt great. In January 2014, the second surgery, they pushed the stoma from my belly back in and I started using my new “jpouch” plumbing system. This meant going back to pooping out of my butt like a normal person. Except- it’s a little bit hard to except that I am no longer normal. So the first three or so months of that was HORRIBLE!! I was pooping my pants multiple times a day. I couldn’t be away from a bathroom. I had to really limit what I ate. Things have since gotten better. But that’s where it gets tricky. What is better?

For the past year I have been dealing with the nasty colitis in my rectum. See when they formed the j-pouch they kept a small piece of the rectum to form a tunnel of sorts. This is to help reduce incontinence. Since the rectum is a part of the large bowel and part of the area that gets diseased by colitis, wouldn’t you know that would happen to me. So while, I am not sick in bed like I was when my entire colon was diseased, I am and have been dealing with tons of other issues. This is where the stress kicks in because every decision I make is based on subjective data. This makes this next decision just as tough as deciding to go through with the first surgery, if not harder.

So with having cuffitis (colitis in the rectal cuff), I have good days and I have bad. I have averaged it to about 50% of my month is no good. Let me explain what happens when it’s a no good day:

• I am pooping 10+ times a day (average on a normal day is 5-7)
• It feels like I am pooping razors
• I am overly gassy, regardless of what I eat
• my joints hurt
• I get stomach pains regardless of what I eat
• I am tired all day long

So here’s why I am considering going back to the ileostomy.

• When I need to pass gas, I have to lie down on my side. Now picture me out living my life (which i have been) and having to constantly pass gas. Now picture having to do that in a public bathroom. Now picture that in a SF or Oakland public bathroom. Now imagine how you would feel after you had to lay on a dirty, probably smelling like pee, floor to pass gas. And if I don’t the gas pain take a toll on stomach pain.
• Well, some have argued, why don’t you just change your diet? How about you give up a) the things the make you gassy, b) give up gluten and dairy, and c) give up (fill in the blank). I have tried that. While I have not been 100% with being gluten free, I have cut back considerably. When I first got sick, I cut out all dairy, grains, and sugars. And while I felt good, I missed food. And not just Texas food or fried food, but I was miserably socially because I couldn’t eat anything. Also- I can’t eat raw veggies. They have to be cooked and even not all cooked veggies sit well. So yes, I can go gluten free or paleo, or this or that, but think about the last time you tried to go on a diet. How successful were you at sticking to it for more than a month?
• With the cuffitis, I am having to put something (a suppository) in my butt (sorry for the graphic wording) twice a day. I am just a little bit over sticking something up my butt twice a day- just a little.
• Constantly tired. I mean this I can deal with for a while. It sucks when it comes to wanting to work out because I need 2 days to recover from any workout. I can maybe 2 days in a row and then I need 2 days to rest. I mean what quality of life does one have with always being tired?

So this is where its so confusing and the decision is not so black and white. This is 50% of my life. Not 100%, not 25%. I have a good week, then a bad week, then a good one, then a bad one. Since its all quality and quality can’t be measured in quantifiable numbers, how do you then decide? How do you know? I mean I can keep going as is, but I am missing out on feeling better? Am I not worth it enough to try to access a higher quality of life? Or I can say fuck it lets do the surgery- and then there’s always the risks that come along with that. I mean please don't get me wrong, I am very grateful for how far I have come. I am grateful for not being sick in bed all day anymore. I am grateful for being able to attend music festivals and eat more of a variety of foods.

I just don’t know what the fudge to do. I have scheduled the surgery for November 13, 2015 (which is not cemented in stone), but my gut is telling me that it is okay to want to go back to the bag. My first instinct is to have the surgery-- but I constantly doubt and question myself. It’s crazy how I can immediately feel guilty for wanting to feel better, or how mad at myself for feeling like I am giving up or like I am not doing enough.

Lost in the World of Self-Hate land...

 

     It is a weird feeling to be able to label something that I have been dealing with off and on for my entire life.  As a kid I was always so critical of myself, my looks, my abilities.  I just figured that was life and that was who I was and accepted that, or that was part of being a girl.  And maybe to a small extent that is all true.  

     That inner critic, let's call him my demon, moved through life with me as I grew to be an adult.  Some years, it was barely there, and some years I couldn't get rid of it. As I grow older, I am learning that it has a name- Self-Hate.  Because really, that's what I am doing, allowing hate-like thoughts take over my full being.  It is not healthy for me to accept the bad criticism.  It is not healthy for me to allow my negative thoughts to rule my body in a negative way.  But how do you battle the demons?  It's not as easy as some would think.  I can't just simply say "Go away, you are wrong." and then it be all good.  It doesn't work like that.  I have to find a way to change 31 years of bad thinking.  You try changing 20+ years of a habit.

     So here I stand here (or sit in front of my computer) before you today acknowledging that the little shit is back and has forced me back into a corner, or back onto the island of Self-Hate land.  I haven't quite figured out what causes him but what I have learned to do is recognize what is going on and to acknowledge that it's happening.  That means I am in a position to try to battle it.  So the next few things, are not for you to critique, but for me to get these thoughts out of my head.  I can't fight the battle silently.  I need to throw that energy out of my mind, my body, and my soul, so that I can work towards happiness.

You are probably wondering, "What the hell do you have to be depressed about?" (because really the negative thoughts made me feel depressed.  So let me finish/answer your thoughts:
Yes, I have my health.  
Yes, I have all my bills paid and a roof over my head.
Yes, I have an amazing partner that is my best friend. My do or die partner in crime.
Yes, I have two crazy amazing dogs that keep me on my toes.
Yes, I have a job.
Yes, I have materialistic things that other wish they could have.

I KNOW I have all of that and more, but just knowing isn't strong enough to get rid of the negative thoughts. My brain isn't wired like that.  So here's what happens in the brain of Erica.

First, it usually gets prompted by a though after looking in the mirror.
Ugh, you are getting fat. How could you let yourself gain 30+ lbs?
How could you not care about your body enough to not eat all that bad shit. 
You know you were better off when you weren't eating dairy, gluten, and sugar.  
Do you not love yourself enough to just do it again.
You are making yourself sick. It's all your fault! And you are so stupid for allowing this.

Those thoughts cycle throughout the day along with:
I am horrible doggy mom. I need to be walking my dogs more. 
So now you are fat and lazy.
How can you not get back into working out. Its not that hard. 
Why are you being so lazy?

So picture all those negative thoughts just constantly circling around regardless of what you tell yourself.  Luckily, I have amazing friends and a very patient fiance that is helping me hang on tight to the rope of escape.

When I wrote this post, I was lost far into the land.  That was less than a week ago.  Today, I feel a little more hopeful. These thoughts still are running wild in my head, but I am slowly learning to ignore them.  I am taking it one day at a time.  In the mean time, I have started working out, because the honest to god truth is, if I don't like something, then I have the power to change it.  That same mentality applies to my physical being as well.  Since I am not truly happy with the way I look physically, I can do something to change, WHILE I work on loving myself.  While I work on ignoring society's views on what I SHOULD look like.  So this week, I decided to focus on working out.  I started the T25 program and am seeing my psychiatrist to talk about the anxiety that comes along with all of these circulating thoughts.  The exercise is definitely helping with how I feel about myself, but that too is a journey.  (and a separate writing topic)

So I leave with this last thought...For those of you that have fully accepted yourself for who you are inside and out, I give you a round of applause.  School me on the steps that I can take to achieve the same power.

Challenge accepted... challenge failed

Confession time:

So I lasted a whole 9 days of no gluten before I gave in and ate a pizza.  And the only reason I gave in was because it was late, I just got off of work, I was tired and hungry. Not a really good excuse but it happened. In addition, I failed the journeling. I also stopped that around the same time. But what I did do, was pay attention to how I have been feeling- and that has been CRAPPY! I am feeling like I did when I got sick, the calm after the storm but before the next storm.  My hands, knees, and feet are back to hurting.  I am so tried regardless of how much sleep I get. I am starting to get lightheaded and dizzy when I stand.  SO it is hard to completely blame gluten and if it is the demon that has possessed my body, then 1) it hasn't fully left my system and is still causing havoc or 2) it's not the gluten at all, but a whole different demon that is also causing damage.  My thoughts are that dairy is now also a prime suspect being that I have been consuming quite a bit- man I LOVE cheese.  So new goal- eliminate dairy.
Another thing I have come to learn about "gluten" or bread like products- they make me backed up and it makes using the bathroom tough and uncomfortable, so I must continue to keep those products to a bare minimum.
Word on the street is that it only takes a week or so of elimating diary to determine how it effects you. SO hopefully I will be feeling a tad bit better.  It has been a full 2 days of no dairy and eating out on gluten AND dairy free is a lot harder than people think. It forces me to cook meals to take for lunch/dinner when I go to work.

But I didn't want this post to focus on venting about constantly being sick. I wanted to focus my thinking on how we have to fail in order to succeed.  I mean if we succeed at everything in life without making any mistakes, what do we really learn?  So as much as I want to succeed at everything I do, I have to remember that it is okay to fail.  It is okay to not be successsful on the first try as long as I don't completely give up.  And based on this past year, I think I am doing a mighty fine job at not completely giving up.

Life is full of challenges...

So I have decided to break my challenges up into smaller periods.  Last month, I decided to challenge myself to run a mile every day for the month of June. Needless to say I didn't exactly meet that challenge because I missed a few days, however, I still feel like I accomplished something because on many of the days that I didn't run, I got out of the house and walked A LOT- like at least 3 miles, and sometimes more than that.  And really the whole point of a challenge is to push yourself beyond where you started at.  However, what I did learn is that 30 day challenges are hard. I mean, I know they are supposed to be hard, or it wouldn't be called a challenge, but I learned one thing about myself.  I learned that, right now, my goals need to more attainable.  30 days is a long amount of time.  I need much shorter time frame so that I meet goals.  In addition, I have learned that I need to find one focus and stick with that.  When I try to add all kinds of other things like running and the bubble butt challenge and so forth, it becomes harder to keep up with it all and I am more likely to give up.  So, with that said, I am now challenging myself to something new.  And it's something I need to do because my health is starting to deteriorate again. So starting today here are my goals for 21 days:

1) Eat gluten free
2) Practicing Reiki
3) journaling the 21 day journey to have proof as to whether it at all works or not (because really, if for some odd reason gluten doesnt change the way I feel, then I sure as heck don't want to give it up forever! I mean I do love  me some bread and pasta!)

So there it is. It is important for me to throw my thoughts out into the universe instead of keeping them bottled in. I find that when I say things aloud, then they are more likely to actually happen.  The universe works in mysterious ways.

It's just one of them days...

When I wanna be all alone.

It's just one them days,

When I gotta be all alone.

-Monica

The perfect verse for how I am feeling today.  I went from have three amazingly happy and manageable days to waking up feeling frustrating with my life and my situation.  I spent the day focusing on work and trying to clean, but I couldn't shake the frustration.  Thoughts just kept spinning in my head and eventually spiraling out of control.  I realized that I don't have the motivation to sew, I was on the toilet every 20-30 minutes so I didn't feel compelled to go for a walk causing me to cancel dinner plans with a friend, and as I laid on the couch and heard the song "Say Something" by A Great Big World, I realized that my last resort to release this energy was to write.  I hate to only write when I am feeling down, but I have to allow myself to hurt, to feel sad, and to be okay with releasing it back into the universe.  My hope is that after releasing these thoughts, I will feel more calm and open to more positive light and energy.

As I think about the song, I can't help but feel deeply moved by the words.  Every time I hear the song even in my head it nearly brings me to tears because I feel like it hits me in a way that it may not hit others.

Say something, I'm giving up on you

I'll be the one, if you want me to

Anywhere I would've followed you

Say something, I'm giving up on you

And I am feeling so small

It was over my head

I know nothing at all

And I will stumble and fall

I'm still learning to love

Just starting to crawl

I feel like when I sing this song or say these lyrics I am talking to myself.  There are many times when I feel like I am giving up on myself.  This has been such a trying year that I just want to throw in the flag.  I am so tired of constantly worrying about it that going to hurt? Does that have gluten?  Does it have soy? What about diary? Well shit, what can I have?  What about when I go out, will I find a restroom?  And I know this is my new life, but some days are just harder than others.  I feel like I am just trying to stay afloat.  I am trying to find all of these things/activities to feel these voids and yet I don't know if I am overbooking myself, over committing myself, trying to do too much, or just being too hard on myself.  Or to play devil's advocate- am I being to easy on myself and letting myself get away with letting my thoughts take over?  I don't know. I just don't know and honestly, it all just leads back to not knowing who I am and not feeling comfortable in my skin.  (But let's expand on that later- it's too much to think about right now)

I woke up this morning and realized that I am just fed up.  I am fed up with being broke because I am spending so much money on "healthy" food and snacks, and supplements, and blood work to prove the supplements are working, and then more money on more supplements because the other ones hurt my stomach.  I realized that I am frustrated with how fucked up the world is in that we, I, have to spend double or triple the cost of "regular" groceries just because I need something to be gluten free or dairy free.  You would think with that lack of ingredients it would be cheaper.  I am frustrated because I am still not normal and yet I have hundreds of dollars of supplements sitting in my cabinet that I can't use.  Or I am spending over a hundred dollars a week on groceries just to avoid all the extra additives.  I mean seriously I am teacher.  A virtual teacher at that, so I make little to nothing.  And I live the Bay Area, so you might as well say I make minimum wage.  It's just that I am paying someone and spending HUNDREDS of dollars of month on a holistic method to heal and feel better, yet the lack of immediate results makes it really hard to focus on the long term goals.  It makes the daily struggle that much harder.  I like to think that I am strong woman. When I want something I usually make it happen, but for some reason, I can't break the vicious food cycle even though every one says its going to be the best for my health.  It is hard to break 30 years of bad habits.  What am I supposed to do when I can't afford any of it anymore? Which is coming up real soon.

They say its so much better for our bodies to eat organic, all natural, non-processed, or meat with no antibiotics- but the world sure makes it hard for your average person to live like that daily.

As I wrap up my thoughts and before I just start rambling, it is time for me to give thanks because although this is sad and depressing, I feel better.  This is what I needed. Thank you universe. 

Life happened (follow up)...

As my last post stated, life happened and I totally didn't make time to write, especially trying to write about the Photo a Day challenge.  I don't know if that was a good thing or a bad thing.  Part of me says it was a good because that means that my life didn't revolve around my illness whether it was by scraping up ways to raise money or writing which then turns my brain to relate every thing to it-but at the same time, it is bad that I fell off the writing bandwagon because it is really a therapeutic outlet for me.  There is really a large part of me that relies on ways to let out the energy that I feel from what has happened to me.  I do, however, find that my mind is slowly creeping away from constantly identifying as the girl with UC.  I am slowly learning to live with and really accept my new body, which is weird, because most days I hate it.  Most days I am sad that I will never use the bathroom like normal people. 

With all of that said, let me tell you what has been happening in my life.  I went to Austin as a last minute treat/trip to spend time with a friend that was recovering from a brain decompression surgery- yeah exactly!  Which was interesting because I had never really spent a lot of time with this friend prior to this.  She jokingly says we were all "downtown friends" being we only hung out when we were all downtown, but to my surprise, we were pretty much a match made in heaven.  We had SOOOO much in common. There was a lot of lounging on the couch and watching murder mysteries (my fave!) and lots and lots of laughs.  It was so relaxing and a much needed break.  I am so grateful we were able spend that much time together and I hope it was as therapeutic for her as it was for me.

I also had a mini-meltdown as I realized that I have been feeling worse and worse and the only thing I can attribute to it is my eating habits.  The crazy thing is, as much as I know I need be better because of everything I went through, but its so hard to break 30 year habits.  (Thinking about how it all started will be a blog coming soon).  SO I am trying to work harder at added veggies to every meal and even adding new veggies outside of carrots and zucchini, but it is tough.  I don't really have the time to cook.  When I need to eat, I usually wait until the last minute to eat.  So now I know that gluten is the devil for my body.  Dairy might be just a bad friend, but not as bad as gluten has been.  So now I need to get back to gluten and dairy free, but most definitely gluten free- wish me luck!

My meltdown also reminded me that I have been struggling with my depression and anxiety.  I just don't feel naturally happy unless something extreme is happening and then when something extreme happens then I fall hard.  SO if I have a great day then I can almost bet that the next day I am at the complete opposite end.  Really, really thinking about getting back on that form of medication because I am at a point where I can't do it alone.  Then that brings up emotions of feeling like I have failed since I was so adamant about not being on any medication.  

So enough of the sad stuff, when I landed from the plane, I got surprised by Marc agreeing to get us a new pup. She is a tiny pittie and has been a joy in the house.  It has been tough with reteaching bathroom and not having her chew up the whole house, but I look forward to having her in our life for many years to come.

So that's it.... Life got the best of me and it wasn't a bad thing.  More to come as I get motivated to write again.  

Much love!