Monday, September 15, 2014

"Keep Your Eyes Open"

Be strong, but not rude.
Be kind, but not weak.
Be bold, but don't bully.
Be humble, but not shy.
Be confident, but not arrogant.

I don't know who came up with the above quote but I'm pretty sure they were on to something. I often cross these lines. Sometimes on a daily basis, if I'm honest. That's not an easy thing to admit either. We will call that pride...

I try to live my life by the golden rule-- you know, the one found in Luke 6.

I often fail miserably at that too. I find that I don't really want to put myself out there in the world in any capacity where things I say or do might come back to bite me. Because believe me, I WILL do or say something stupid that I will have to own up to. It's just a matter of time.

I was thinking about this today when I went for a run. Running can either be my friend or foe mentally. It gives me time to process and do some introspection. Often times it brings crap to the surface that I've managed to push aside and not deal with. These make for long and painful runs, my least favorite but most productive. 

I won't go into the boring details of what my thoughts were today other than this: I tend to keep to myself and not put forth a whole lot of effort in taking myself out of my comfortable little bubble.

As I was finishing my run and transferring into the cool down period my play list started Needtobreathe's Keep Your Eyes Open. Have you heard this song? It's got a great beat. Today, for the first time I really listened to the lyrics. Really listened. 

If you could soldier on
Headstrong into the storm
I'll be here waiting on the other side
Don't look back
The road is long
The first days of the war are gone
Take back your former throne and turn the tide

Cause if you never leave home, never let go
You'll never make it to the great unknown till you
Keep your eyes open, my love
So tell me you're strong, tell me you see
I need to hear it, can you promise me to
Keep your eyes open, my love

Just past the circumstance
The first light, a second chance
No child could ever dance the way you do, oh
Tear down the prison walls
Don't start the curtain call
Your chains will never fall until you do

Cause if you never leave home, never let go
You'll never make it to the great unknown till you
Keep your eyes open, my love
So show me your fire, show me your heart
You know I'll never let you fall apart if you
Keep your eyes open, my love

Open up
Open up
Open up your eyes
The weight is unbroken
Open up
Open up
Open up your eyes
Keep your eyes open

Don't let the night become the day
Don't take the darkness to the grave
I know pain is just a place
The will has been broken
Don't let the fear become the hate
Don't take the sadness to the grave
I know the fight is on the way
When the sides have been chosen

Cause if you never leave home, never let go
You'll never make it to the great unknown
Open up your eyes
Keep your eyes open
So tell me you're strong, tell me you see
I need to hear it, can you promise me to
Keep your eyes open, my love
So show me your fire, show me your heart
You know I'll never let you fall apart if you
Keep your eyes open, my love

Keep your eyes (Keep your eyes open)

Ummmm, is this a hint that I need to break out of the bubble? Because, I really, reeeeaaaaallllyyyy  like my bubble. 

What is my true reason for staying within my comfort zone? Oh, that's right-- it's comfortable! As long as I'm comfortable in my little zone my chances of screwing up are pretty slim. Or at least the audience is a little nicer and more forgiving when I do. 

That's just pathetic. I'm a little embarrassed to have admitted to this. OK, a LOT embarrassed.

So where do I go from here? How does one break free of the comfort zone bubble? How does one not panic, hyperventilate, run back screaming and slam the door in the face of the unknown? When did I become this person?

I have a feeling chronic illness has quite a bit to do with it. That's a great excuse abut that's all it is. It doesn't keep me from doing everything I love. Sure, there are days and sometimes weeks even, where I can't do what I enjoy. It doesn't keep me from picking back up as soon as I feel good though. 

Here's what I think: when I was super duper sick pre-ileostomy, I had no choice but to give in to the disease and it's daily debilitating yuckiness. I had to pick and choose carefully what my time and energy would be spent on. Post-ileostomy I still have to prioritize and take care of myself because I do still have bad days and nights for that matter. I may have what feels like copious amounts of energy compared to before but in reality, it still has a cap on it. So, all that is to say this: I got comfortable in my protected little sickness bubble. I've come out of it in many ways but as far as pursuing new friendships heck, even maintaining some of the old I'm doing a pretty pitiful job there.

I am quite content alone. Maybe too much so. This is something my hubby gets frustrated with me on. I don't need a lot of close friends. I'm fortunate in that the hubs is my best friend and I have a great family which provides me with several close relationships. Branching outside of this is hard. I enjoy meeting new people and hanging out with great friends but I tend to keep just a little bit of distance there. This is an area I hope to be bolder in.

I guess it's time to leave home and venture into the great unknown...

Tuesday, September 2, 2014

I'm OK with that.

Maybe it's being on this side of 40 but, I have come to realize that there are things in life that are just fine by me. While down and out this weekend with a lovely virus I did a little introspection.

1. I want to be healthy and fit. By this statement, I do not mean cover of a fitness magazine healthy and fit.
      I'm going to take care of myself. I will try to eat right, drink lots of water and exercise regularly. I'll exercise when I can and not lose sleep over when I can't.
      I won't guilt myself out of the occasional dessert or berate myself for the venti hazelnut latte with whole milk either. I will enjoy the moments life gives us to celebrate.
      I won't weigh myself everyday or compare the size of my thighs with Miranda Kerr's. (Besides, she'd lose if we went on the larger number and I'd hate to give her a complex.) On that note, my thighs and rear end may not be firm enough to bounce a coin off of and neither will my abs.
      I won't be rocking a bikini on the beach and not because I'm trying to hide my un-flawless body either. I have a battlefield of scars on my tummy from numerous surgeries. I have an ostomy bag on the right side of my abdomen. I have some excess weight from years of steroids and lack of muscle from being sliced and diced. I have wiggly-jiggly thighs and a rear that's significant in size. The stretch marks that reside around my middle are there because I gave life to 2 amazing young men. They are the tattoos of motherhood. I will be wearing a tankini with a mom-skirt because I feel comfortable that way. I want to have fun at the beach and not worry about what I'm wearing.

And you know what, I'm OK with that.

2. The home is where the heart is. Absolutely true. Mine won't be a feature in any magazine there either but it will be filled with people I love and stuff that makes us happy.
      My floors could possibly be sticky and you might discover a few Cheetos in the couch. There's dog hair and shoes and probably laundry on the furniture. The throw pillows are often used as TV trays when they aren't thrown on the floor and the stains will prove it.
      We live out of the dryer and the dishwasher. There's always some half-done project covering the dining room table. There's a good bet that something in the fridge is out of date too.
      Our beds aren't made daily or even weekly sometimes. If you venture into our room I can guarantee there's gonna be a pair of undies on the floor somewhere.
      Company is always welcome, just don't open the closets because that's where I'm hiding stuff. We are always down to do something fun instead of chores. Let's face it--great memories aren't made while doing chores.
      My house may be messy (I do try to keep the dirt at bay) but it's where we live. It's comfortable and welcoming and full of love.

I'm OK with that too.

3. Life is short and it should be enjoyed.
      I have a limited amount of energy due to the autoimmune crap so I will limit the demands on my time and energy. I'm not the mom who will volunteer for everything or be at the school every time the doors are open. Same goes with church stuff.  I wish I could, but I just don't have that kind of stamina. I have to conserve it or my family will suffer.
      Spontaneity makes for some great times and memories. I will not hesitate to jump in the car or leave the dishes in the sink for a good time with family and friends.
      I'm drawing the line with petty drama. It'll piss a few people off but I'm not going to give it a second thought. You can't please all of the people all of the time.
      I won't dwell on mistakes. I'll just focus on what can be learned and move forward. The past will not dictate my future.
      I may not make much of a mark on society but that's fine. As long as my family is healthy and happy, it's enough for me.

And yes, I'm OK with that.



Tuesday, August 12, 2014

The Struggle Within

As you know, Robin Williams passed away yesterday by taking his own life. This is a terrible tragedy and one that is so hard to understand when he seemed to want for nothing. 

Depression is like that though, a deceitful and sneaky disease. Often it's sufferers exhibit no outwardly obvious signs of it's severity. It is most often a battle fought in the dark corners of a person's mind. It is so powerful and persuasive in it's mission to destroy and it is often successful.

Depression is a cancer of the mind.

I have struggled with depression off and on for many years. Until you've experienced it, it is very hard to comprehend how invasive and manipulative this disease is. I can only describe it as heavy. I looked up the definition of heavy and was surprised to see how many meanings it has both as an adjective and a noun. I'd venture to say that almost each one can relate to depression. 

Depression is like having a 50 pound weight strapped to your back at all times. It's always there, reminding you of it's heaviness every move you make. At times, it's oppression makes it impossible to stand and carry on as normal. This is when the disease is at it's most powerful for it can mottle the thoughts and rational of it's host.

When a person crosses the line and considers ending his/her life, depression has taken the mind hostage. It's infiltration feels like the end of the world and all this person can think about is finding relief. To make matters worse, this disease will deceive it's prisoner by suggesting suicide would be the best course of action to keep loved ones from suffering too. 

I'm guilty of saying that suicide is a selfish act but I was wrong. It may seem that way to those on the outside looking in but what we have to remember is this person is not thinking rationally. He/she is sick, a very real illness of the mind. At this point, he/she is so blinded by the pain and fatigued from the battle that this act is seen more as a self-sacrifice. A way to end the suffering that is affecting everyone around them. The thought that the life of others will be improved if he/she were no longer there to mess things up. To cause more pain and suffering. To steal their happiness. Yes, these are complete and total lies told by depression as suicide leaves a wake of hurt, confusion and destruction for those left behind. If the sufferer truly understood the consequences of this act, would the idea of suicide be so appealing?

We've all known or heard of someone who was terminally ill with some form of physical illness like cancer and chose to end their life, to end the pain and suffering. To keep from being a burden on their loved ones. We can often see why this person would choose such an option when their body is physically evident of their struggle yet, we don't judge them and call them selfish. Why is that? Please do not misunderstand me, I -IN NO WAY, SHAPE OR FORM- believe that suicide is right or OK depending the circumstances. I am only saying that we tend to draw a line out there and when that line is crossed, we react based on our own feelings and understanding. The fact remains, we do not know why a person fighting depression comes to the decision of suicide or what they are truly thinking in that final moment. Our quick judgements can often bring more pain to those who have been left reeling in the aftermath of a loved one's death.

I take medication for treatment of depression. I suffer from a chemical imbalance where my body does not produce enough serotonin that I need. Interestingly enough, 90% of serotonin is located in the GI tract. So what happens when your GI tract rebels and acts out against you? What happens when a disease attacks the GI tract and keeps it from functioning properly? What happens when you loose your colon and large intestine to disease? Is it really any wonder why I struggle with depression? 

This is something I will deal with for the rest of my life. Now, I do know that God can heal this and I am totally open to that but until then, I will continue to treat my depression through the help of doctors. I don't want to get into a debate on how we should believe and trust God for complete healing versus treatment with medicine. I believe that God gave us the understanding and desire to seek knowledge in order to help each other in times of need. I'm in need of treatment for a medical condition and I sought it out via the medical community. I love the Lord 100% and I believe that He is capable of healing me and I trust that He's using modern medicine to help me. There is no shame in dealing with illness. We live in a fallen world and must deal with the consequences of this. Depression is a real sickness and it must be treated as one. 

My heart is truly broken for Robin Williams, his family and friends and I hope and pray they will be comforted during this time of great sadness. Yesterday altered their lives forever. Maybe through this, more awareness will be brought to the seriousness of depression. I think it's our responsibility to honor the struggles people face so that good can come from tragedy.

Monday, August 11, 2014

Back to Basics

Every year about this time we start preparing for "Back to School". I consider this the beginning of the real New Year. When you have kids in school, August is more like January. It entails extensive goal and list making. It spurs an organization frenzy. New clothes, shoes and supplies are bought in order to ensure success in all areas of life from personal image to academic standing. Yes, August brings excitement and a renewed sense of purpose for us, a chance to start again on a blank canvas.

With one child in college, my August preparations have lessened quite a bit. College Boy is now responsible for his own personal image and academic standing. Of course, there is the check writing by us that makes this possible plus the friendly and encouraging accountability texts and phone calls to help guide him along the way. I must say, I do not miss the trips to Office Max to fight over supplies.

Son #2 is a senior in high school this year. The Senior Year. The amount of stuff required to be done this year boggles my mind. I know, I've already done this with one kid but really, you cannot compare my boys as they are very different so each Senior Year will be too.

This kid plays sports like I drink water. We are constantly on the go, sitting in bleachers and cheering for the team somewhere in the Texas panhandle. I have no idea what this year will be comprised of so we will just have to be ready for anything.

It's a sweet sorrow really, watching these boys grow into a responsible young men. Sometimes I miss the little voices, the sound of army men battling it out on the coffee table, and the sweet cuddles they so quickly grow out of. I cherish those memories. (I don't miss the work load of those young years though.)

So it's back to basics for me. I'll tell you this: summer is wonderful but it's a terrible influence due to the bad habits I fall in to. Staying up/sleeping late, being lazy and unstructured, having no clue what day of the week it is, putting off chores to sit on the patio reading... Honestly I'm a bit concerned about this, when son #2 leaves home I may become a complete and worthless bum.

The first thing on my TO DO list is try to blog more. It just helps me think better. I don't know why but it does so it's a must. Seeing my thoughts in black and white helps me keep perspective. It gives me a place to vent, praise or just ramble. I am a much better writer than I am verbal communicator. Some of you may not think that's true but only because you know well. I'm much better one on one with a close friend than in a group. I also suck at small talk. I think I need a tele-prompter or an earpiece with a speech writer on the other end. At the very least, note cards. Maybe there's a class I could take "Social Skills for the Socially Inept"?

Well, moving on now. Next on the list is to find a regular Bible Study. I haven't had one in a very long time. Years ago I went to one that was phenomenal, my friend and the leader of it passed away in 2004 and since then I've not had a steady group. I've been a part of several over the years but none have had the impact that one did. It's probably me, in fact I know it is. I miss her, I miss that group and our dynamic.

Part of me has held back from getting that involved again, I can't really explain why though. Some of it is that I still compare that group with any others which is very unfair and all I'm doing is cheating myself out of something that might turn into a good thing. Another road block in this area was disease. Not only did I loose my friend in 2004 but I was also diagnosed with UC that year. This diagnosis stole a lot of my freedom and ability to commit to things. It seemed like the days I couldn't get out of bed were always the days the study group met. I had to guard my health and my time allowing only priorities to lay claim to my energy. I never had enough to fully commit to anything outside of family.

Thankfully, now with my ileostomy I am a much healthier person! Also, my kids are so much more independent now. My schedule is wide open and ready to be planned. One thing chronic illness taught me though is saying yes and no and meaning it. I truly consider what I am willing to commit to and freely say no when I need to. Gone are the days when I worried that saying no would offend someone. If I say yes, I mean it and I will do everything possible to keep that yes. If I say no, it's because I do not feel good about committing to something if there is a possibility I won't be able to follow through. One thing I've implemented is that I no longer apologize for saying no. If I preface my no with a "sorry" then it's because I mean it. "I'm sorry I can't" translates to "Man, I really wish I could but I cannot keep that commitment and I want to be honest with you about it." Saying no is meant to be respectful to the person asking not a personal judgement or insult to them. It's also a way I stay healthy and keep my priorities in check. It's so easy to over commit and that takes a tole on my health faster than anything.

Structure. Man oh man do I ever need structure! I am not one to willingly put structure in my life even though I need it. I tend to be very spontaneous and prone to follow a wild hare but structure keeps that side of me in check. I am a classic starter of projects but not always a finisher. The structure of the school year outlines my days and gives me time brackets in which to function. I can better manage my whims when I know I have a time frame. Structure does not come easy for me and there are times I will fight it like a baby fighting sleep.

Today started day 1 of the Back to Basics campaign. I've done well too. For example, it's 3pm and I'm NOT in my pajamas. I've knocked out my errands and chores for the day as well. I think I'm gonna reward myself with a 4pm Fight Club class. Nick's Fight Club is my latest obsession! It's so stinkin' fun and I absolutely love it! It's the hardest workout I think I've ever done and it burns the calories like none other. I try to go 3-4 times a week. It just makes me happy. So happy.

Tuesday, February 4, 2014

Counting my blessings and ostomy supplies

Hello Again. It's been too long since I've posted. I've been struggling since my last post back in October. Haven't felt very inspired to write or do much of anything.

Winter blues have set in I guess.

My pain level is always worse during this time too which doesn't help my ever worsening attitude. December through March seem to be the hardest months for me. The weather sucks, especially January and February. These are the coldest, ugliest and shortest days. Groundhog day just makes me wanna cuss. Punxsutawney Phil, stupid animal. I really can't blame him though, I'd do exactly the same thing in his...fur.

It's snowing today. Expecting up to 5 inches too. Not helping.

It is pretty though, I'll give it that.

I'm going to stop my negative train of thought here. After all, it is not productive and only proceeds to worsen my attitude.

So, what's the best way to change my thought pattern? It's not hard really, I just need to step outside of myself and look at all the blessings in my life.
Shelter? Check.
Food/Water? Check.
Clothing? Check.
Transportation? Check.
Income? Check.
People who love and support me? Double Check.
Yep, my basics and so much more are covered with out much thought honestly. It doesn't take much to realize that things are pretty good. When I do this I feel very foolish and selfish for wallowing in my own pittifulness. (yes, I made that word up.)

OK, time to move forward and out of this stupid holding pattern I've been in.

This week I will be 41. This is another thing that gets me when I realize how ridiculous I'm being. Birthdays have never bothered me. I'm not too worried about getting older in fact, I'm quite the opposite. I actually love that I am able to celebrate another year! The number is truly inconsequential to me. I almost didn't see 38 so 41 looks pretty damn good. I have several friends who have not seen this side of 40 and their families would love to celebrate another birthday with them.

I find it quite ironic that my birthday is during the worst time of the year for me. Maybe, it's to give me something to look forward to. An opportunity to meet up with the people I love and celebrate. A reason to drag my rear out of bed.

It's now been 2 years since my ostomy surgery. Hard to believe. It's taken every single day of these 2 years to feel like I've finally got this thing down. The times where I've had an issue I seem to take it in stride. I've got my emergency stashes in my purse and my car. My last "bagcident" (bag + accident = bagcident) happened just before Christmas while I was headed in to town to meet a friend for lunch and shopping. I was wearing black leggings and a tunic shirt thank goodness and you'll see why in a minute.

So here's the story: I could tell something wasn't right as I drove in. We live about 10 miles outside the city limits so there's not much I could do until I got to my destination. Anyway, I pull into the parking lot and sneak a peak inside my leggings to see what was going on. What I discovered was that I had a bit of a leak. I grabbed my wipes from my car kit and threw them in my purse along with another bag just in case and headed in the store to the bathroom.  As I pull my leggings down, I realize that this is not going to be an easy clean up. It wasn't just a little leak, it was massive! My undies are covered in poo! (I tuck my bag inside my underwear to keep it close and secure to my body.) This presents quite a problem as I do not have spare undies with me. I also come to the conclusion that I need to strip in order to protect my other clothes.
This is not my idea of a great start to a fun day. Here I am in a public restroom taking off all my clothes including my socks so I don't risk getting more poo anywhere else. I will say there's one thing that worked in my favor here, the restroom is a single and not a multi stall so I was able to lock the door and have plenty of room and privacy. However my joy is short lived when I realize there are exactly 3 paper towels left and less than a quarter of a roll of toilet paper which, of course, is single ply. At least I had the travel sized wet wipes from the car.
Now I'm concerned about what I'm going to stand on once I remove my boots. The floor is somewhat clean but nothing I want my bare feet on. I can't afford to put paper towels down to stand on, there's a good chance I will need those for clean up duty. I decide the only option is to lay my boots on their sides and stand on them that way.
As I remove my clothing, including my tunic because I can't get poo on that, I notice that my leggings are in pretty good shape. There is only a little spot at the top that's soiled. It's a miracle and I say that because they should have looked just like my undies.
Well, there's no point in trying to save the underwear so in the trash they go. Now, I need to figure out why my bag leaked. In my investigation, I find that it is properly sealed both to my wafer and at the bottom where it empties. So where is the leak from? I decide to remove it and replace it with a new one and as I'm doing so, I find the source of the leak. There is a hole in the underside of the bag near the top where it connects to the wafer. It's not a big hole but enough so that about 1/2 of my output can find it's way out. This is a factory default and it makes me mad!
Ostomy supplies are not cheap! Our insurance will cover 3 boxes a month which is awesome. It allows me to wear a new bag every day. Not many people have this luxury. I know several who are only allowed 1 box a month. The bags that I use come 20 to a box. If I only got 1 box a month and then found a defect in a bag, it would be a serious issue. As it is, I am able to stock pile my supplies. I always get the maximum amount I'm allowed just in case of an emergency. I have to mail order my supplies since they are not carried by pharmacies around here. There's no midnight run to Walmart like when you run out of toilet paper!
I should add ostomy supplies to the above listing of my blessings...
Ooops, I got on a soap box there, sorry. Back to my story now.
Let's see, where was I? Oh right,just threw the bag and the undies away. Now, I'm standing on my boots, stark naked holding wet wipes and 3 paper towels. Time to start the clean up process.
I'm finally clean after basically taking a sponge bath in a public restroom so I start in on cleaning my leggings. I decide the only option I have to get them clean is to run the waistband under the tap and of course, there is no hot water. At least it's a real faucet and not one of those you have to push the knob down for a 5 second high pressured blast of water.
Did I mention it's like 30 degrees outside? Well, it is and now I'll be wearing leggings that are wet at the top. Bonus.
I finally resurface from the bathroom 20 minutes later and apologize to my sweet friend who proceeds to make poop jokes. I love her for that! That folks, is when you know you have a good friend.

Friday, October 18, 2013

All pain, No gain.

I need to vent. Reader beware, if you're looking for a happy go-lucky posting, this is not it.

I'm in pain. This is the most pain I've been in since my ostomy surgery in September of 2011. My bones ache. My muscles are tender to the touch. My joints throb. Even my skin hurts. This kind of pain was a daily occurrence before the removal of my colon and large intestine, it went hand in hand with the active Ulcerative Colitis. I really thought these kinds of days were behind me now.

I guess not.

The past few months have been miserable. I am popping pain medication (50mg Tramadol) like it's candy and it's not touching the pain. I hardly slept last night due to the pain which made the aching even more intense today. And now guess what, I can't sleep tonight because of the radiating thobbing in my legs. It's a vicious cycle. What I need is relief and sleep but one won't come without the other.

I rarely tell anybody about the pain I'm in. Mainly because they would be sick of me complaining constantly. I have a handful of people in my life who truly understand chronic pain and every now and then I allow myself to open up about it with them. I try to stay positive and look for the best but when pain infiltrates every fiber of my being at this level well, it's extremely hard to stay focused on the good.

I think I've worn the hubby out lately too. He seems a little frustrated with me.

I've been to see my arthritis doc, no answers there. Great.

We're moving into the fall weather pattern which is bringing in high pressure cold fronts that wreak havoc on my physical being. To be honest, my mental state isn't fairing so well either. Spend enough time in pain and it will take a toll on your spirit.

I'm trying my usual ways of coping with the physical pain by distracting my mind. It helps some. I was doing some hand sewing on a project but the sharp stabbing like sensation and the relentless ache in my hands and wrists kind of stalled that out. I did some art journaling this week which I really love to do. It helped some but then sitting in a chair at the table became too uncomfortable. I read a lot and that allows me to escape for a while but when I am constantly changing positions it's hard to focus. Watching TV is an okay form of distraction as long as I can do something else along with it. I know it seems a bit childish, but I love to color and often do while watching TV or until my hands throw a fit anyway.

Nothing is helping tonight though.

I've exhausted myself with Pinterest, Polyvore, Facebook, Instagram, Flipboard and Twitter. I've read all my favorite web pages, surfed mindlessly and even tried window shopping a few retail sites. The game apps on my IPad and phone no longer hold interest. I can't seem to find a good book since finishing the last one. The DVR has run dry. See, this is what pain does, it robs you of the joy in your favorite things. Makes me wanna cuss. Son of a beached whale!

I do have a theory of why my pain has progressively worsened. Mind you, it's only a theory but here goes:

  • In September 2011 I had my ostomy surgery which was something like 4 hours under anesthesia then, a few days later went under again for a bit of stoma tweaking for less than an hour. 
  • In December 2011, I had to have the rectal stump removed because it flared badly with UC. Thus another round of anesthesia for several hours and--wait for it--I was overdosed causing respiratory failure. Bonus.
  • The funny thing about anesthesia, it can stay in your body for 6 months or longer depending on the amount used and how fast the body metabolizes  it. 
  • I did the math on this: 3 surgeries, 2 of which were for several hours, plus the overdose equals enough anesthesia in my body for at least 18 months. I think this was masking the joint pain. 
  • As the anesthesia has worn off, my pain is increasing.
So that's my theory, in bullet points no less. Who the heck really knows, the doc sure doesn't seem to. All my blood work so far is normal, nothing jumping off the page anyway. No new diagnoses to blame. That's what's hard, the not knowing why. If there was a clear reason then there might be a clear answer. However, there is no guarantee in that either.

I'm finally feeling like I can relax now so I'm off to bed. Sorry for the pissy attitude. Sometimes you just need to purge the ugly.

Thursday, October 10, 2013

Life in a Bag

I have an ileostomy which means I do not have a large intestine or colon. 
I poop in a bag from a stoma located on my lower right abdomen.
A stoma is a small section of the bowel that opens on the outside of the abdominal area allowing waste to leave the body.
I will live with this for the rest of my life.
My ileostomy is the result of battling Ulcerative Colitis for 7 years.
It sucked.

I tried countless remedies, both medical and homeopathic.
Eventually, nothing worked and my colon gave up the fight.
But I'm OK.
I actually like my stoma.
Her name is Lilly for little ileostomy.
Having an ostomy changed my life completely. 
It gave me something I'd been missing for a long time.
Quality of life.
And probably quantity too.
I have no problem discussing Lilly or the UC that caused her.
I want to be asked about Inflammatory Bowel Disease or IBD.
What I've found to be true is this:
There are a lot of people out there just like me who are struggling with IBD.
They are embarrassed, scared and lonely.
I know, I was too.
There is help available.
Others who suffer the same thing, life with an invisible disease, are closer than you think.
Autoimmune diseases are tough but we are tougher.
We can band together.
We can support one another.
We can do this.
All we really want is a friend who will talk shit with us.
I know it's crass, but that's just the way it is.
IBD is hard because it makes people uncomfortable.
It's not an easy topic to start.
Poop is not dinner party friendly.
I may not have UC anymore thanks to my ostomy,
I still struggle with some of the symptoms of the disease.
Joint pain.
Body aches.
Diarrhea. (yes, an ostomate can still have diarrhea)
These are just a few and the ones I struggle with the most.
I'll still take this over my large intestine and colon any day though.
Sometimes, I even have phantom pain. 
Yes, that's a real thing.
Before the ostomy, I would have EMERGENCY trips to the bathroom.
My intestines would cramp and I would have a pain so fierce
 it could put me on my knees any where at any time.
The urge to relieve my bowels would be so intense and painful 
it would take my breath away.
The urge.
This is the phantom pain I am talking about.
Even now, 2 years later with an ostomy, I still feel this urge.
It's not as painful now.
More of a noticeable uncomfortableness.
It no longer takes my breath away or brings tears to my eyes.
It only lasts a few seconds and then it's gone.
But I guess there is nothing normal about disease.
I am proud to say that I have an ostomy.
My life is much better, fuller, happier, stronger, richer because of it.
I am more active, more outgoing, more productive, more alive with it.
It's a part of who I am now.
And I'm OK with that.