Beautiful Scars

Look who else had a scar on her tummy!  She had just had her gallbladder removed before this picture was taken. Unfortunately, this was not long before she died.  Somehow this picture is so sad, beautiful and strong all at once.

Chronic Illness and Work

Here’s a symptom of chronic illness that the Drs will never warn you about.  Being chronically ill means that you will most likely get labeled as lazy, irresponsible and someone who can’t be counted on to be able to get things done in the work place.   It doesn’t matter that it isn’t fair.  It doesn’t matter that it isn’t true.  It is what it is no matter where you work, or how hard you work while you are there.  There will come a day, a week, a month, when you will need surgery, hurt too much, or just be too run down because your body is constantly fighting itself, to go to work, or to be able to “just do your best” while you are there going through the motions.  Or more accurately, you will do your best; your best just won’t be all that great. 

The first time it happens, they will send flowers.  They will tell you how concerned they are, and how you need to take care of yourself, and just get better.  The second time, they will try not to be annoyed, but the little signs that this being sick thing is getting old and it is about time you cut it out, will start to show up on their faces if not in their words.  By the third time your disease has the nerve to affect your life and consequently your ability to do your job, people start thinking, “yeah yeah yeah, we get it.  But it is time you just get better already.”

You want to shout, “What part of ‘Chronic disease’ don’t you understand? “  But instead you say, “I’m sorry if anyone was inconvenienced by my absence.  I am feeling much better and I’m sure I will be okay from now on.”  You say these things because you feel grateful that you still have a job, and you know that nothing good can come from yelling at your boss.  It doesn’t matter that it isn’t your fault. It doesn’t matter that you want to be there working and earning your paycheck just like any healthy person can; it is just that sometimes your body doesn’t let you.   

For me, trying to work and keep a job is the hardest part of this illness.  It is harder than missing vacations, harder than hospital stays and harder than any other symptom this disease can throw at me.  Having to explain myself again and again makes me feel weak and embarrassed.  Having to apologize for being sick makes me plain old angry. 

I am not an unhappy person, and most of the time I don’t feel sorry for myself.  I accept that there are things beyond my control, and I am grateful for the gifts in my life.  I know that everyone on this planet has their cross to bear, be it physical or mental illness, the passing of a loved one, childhood trauma, or any number of things that we can’t see just by looking at someone.  I know that I am well loved, and therefore better off than most.  I am just sick to death of having to prove myself again and again, or feel guilty for something that I would gladly change if it was in my power.  

Still, I know that I cannot dictate how people react to me or my disease, or any other aspect of my life for that manner.  All I can do is pick myself up, try again, and try to live the best way I can, in and out of the office.  I cannot stop anyone else from judging me.  But I can control how I judge myself.  I am proud of what I have accomplished in my life, professionally and other wise, while dealing with this disease.  I work hard, and I do my best to stay well.  I am a good person.  I am doing the best I can.  That is all anyone can do. 

Being Sick Sucks!!!!

I'm having a hard day.  I haven't been feeling well, so I have been working from home and I let a ball fall on a project at work.  I feel terrible.

When you are sick, you are ether not taking care of yourself, you are letting others down, or both.  As long as I am sick and working, I will always be letting people down when I unfortunately and unavoidably get sick and let a ball fall.  I don't know what the answer is, but I just can't live this way forever.

I'm not sure what to do, and I hate grown up decisions.  I feel very sad and stuck.  So, welcome to the pity party, leave your presents in the comment section and make me feel better!

Dog Day

It's a good thing that dogs can't die in place of the people that they love, or no person with a dog would ever die!    

My dogs look at me with so much love, I know that they would do anything to make me happy.  I have the best little mutt butts in the world, and they have been keeping me company and loving on me all day.  I haven't been feeling well today (Crohn's sucks!), but it has been a good day thanks to them anyway.  :)

LOVE

After my first surgery last year, I went to Alaska to visit my parents and heal, and my husband went with me to help take care of me.  It was my first time dealing with my ostomy out in the world.  It was hard and things did not always go as smoothly as I would have hoped, but Jer was always there to remind me that everything was okay, and that he loved me so much.

One of the days we were there, we went to the coast with my folks, and when I wasn’t looking, Jer wrote this is the sand.  I don’t know why it touched me the way it did, but it was lovely.  I love my husband so much.  I think that part of the reason that I love him so much is because of how much he loves me, and vice-versa.  It is wonderful to know someone who thinks you are so great, for whatever and whoever you are, especially if you feel the same way about them.  Every moment we have together is a gift, no matter what is going on around us. 

Scars

I know it is an odd thing, but I really like my scars.  Even the ones on my face.  To me, they are a badge of honor.  They show that I went through something once, and I was strong enough to get through it and keep going.  I am especially proud of the ones on my tummy, because I feel like I earned them.  I know it is odd, and a lot of people might think they look ugly, but to me they really are kind of beautiful.  It took some getting used to, but even my new funny belly button that is off center and sort of making a little cave to the right is okay with me. 

Hard to tell what is going on in this photo, but it is a bloated post surgery tummy upside down (all photos are after my reversal surgery and taken with the camera on my phone).

Here is when my wounds started to heal.

Here is several months ago.  I had already gained about ten pounds since my surgery. 

Here is a few days ago, ten more pounds on (funny what happens when it doesn't hurt to eat!).  Totally healed. 

Meeting the Unicorn

I meet another girl with Crohns disease this week.  She also has an ostomy.  We met up near my work on Tuesday and we meet near her house on Thursday (both public places since we meet on the internet). 

It was very refreshing and wonderful for both of us to actually meet someone else with such similar experiences.  We kept looking at each other as if the other one was a unicorn or some other mythical creature we had only read about in fairy tales.  I have never met another person with Crohns before, let alone and ostomy, and it was nice to find her to be so regular and normal.  It made me have more faith that when people meet me, I seem regular and normal to them too.  I have never been sure of how it must feel on the other side of this. 

What struck us both was that neither one of us seemed sick to the other one, although we know from talking to each other that we are both going through some things right now with our health, we wouldn’t be able to tell from looking. 

It also struck me how similar our experiences, not only with this disease but in our lives, have been.  Although I believe that this disease was always with me, I have often wondered if perhaps I hadn’t had certain emotional and environmental triggers in my life, if the disease may never have presented itself at all.  Of course, I will probably never know for sure if the stress in my childhood, or my eating disorders triggered my disease, but it is something I think about. 

You never really know how you are supposed to deal with a disease, or how others would feel or what they would do in your situation.  I was in and out of the hospital a lot last year, and sometimes I felt very weak willed for having to go back in.  Then one day I asked the ER staff if they saw many people come through because of Crohns disease and they told me that people with Crohns have to be admitted to the ER all of the time.  Knowing that I wasn’t the only one who couldn’t “just deal” with the pain all of the time made me feel sort of free in a way.  It wasn’t just me.  I wasn’t weak, and I wasn’t alone.

As you can imagine, actually meeting someone who had been through things I have been through with this disease and had felt the same ways I have felt, had an even stronger impact on me than hearing about people like me from the ER staff.  Hearing my new friend tell me about her surgeries and her pain made me see her as strong, and it helped me to see how strong I have been too.  Although we have both gone down our own path with this disease, it was kind of amazing to realize that there was someone out there who was like me.

It was an added bonus that my new friend seems like a very nice person and someone who I would want in my life, sick or healthy.  I hope that she and I stay friends for a long time.  I have lots of supportive people in my life and I am thankful for every single one of them, but sometimes it is nice to just sit down and talk to someone who has been where I have been.  Sometimes I think I just need to be face to face with another unicorn.