But you don't look sick!

But you look healthy? 

 

This was something that I heard a lot of while I was sick with Ulcerative Colitis and while I have been dealing with my ostomy.  Invisible illnesses and disabilities can be some of the most difficult things to deal with.  If people can see that you look sick or that you need assistance from something they are more willing to understand and help out. 

I do not like showing off my ostomy bag so I do everything I can to conceal it when I go out.  Also it makes it easier for me if I have my bag secured to my stomach and do not have it just hanging, just think a bag of poop does get heavy after a while so I hold it up with a stomach wrap.  As you saw in my previous post just ask Jude about my bag and he will be more than happy to show it off to you.

The things that people do not understand are that when I was in a flair with ulcerative colitis I was going to the bathroom 20-40 times on a bad day.  Just so we can put that in perspective if I am up from 6am-10pm that is 16 hours.  So if you are going 20 times that is 1.25 times per hour and if it is really bad it's 2.5 times per hour.  I used to get so jealous of people saying that they only pooped once a day or even that they went every other day.  I was praying for several hours off from the bathroom.  Those were also the times that I made it to the bathroom, there were several times that I was running to the bathroom and didn't make it.  So much fun let me tell you when you are at work that you have to sneak out of the bathroom to your car to leave because you had an accident. 

So I went forward to have the surgery.  Now I am just waiting for the wound to heal.  I have been going to the doctor almost every day to have a wound cared for since January 9^th, and I have to pay a copay every time.  Now throw on top of this that I have a bag that I poop into and have to change every three days and I have to empty my bag usually about every four hours.  There is always the possibility that it might leak or pop off like it has when I stand up and get it caught on something.  I have to be careful lifting things so that I do not herniate my stoma.  Also because of my open wound I have to wear diapers ever day due to the wound trying to heal.  So with all of that going on I am to remain positive all the time despite the anxiety and depression that have come along with it and have been exasperated by the prednisone that I was on. 

Yes I am getting healthy and let me be the first to tell you I am very thankful for this but there are days that I wish I had been healthy enough not to have to have an ostomy.  So next time you see someone and just assume that because they look healthy and are not needing your assistance right away that they are ok and do not need a helping hand every now and then.  We all need some support every now and then.  I like to tell Jude all the time that even Superman and Spiderman need help from their friends every now and then. 

A Quick Look Into My Brain! (Buckle up!)

“Every man has his secret sorrows which the world knows not; and often times we call a man cold when he is only sad.”
― Henry Wadsworth Longfellow

The definition of Depression is as follows:

1. Severe despondency and dejection, accompanied by feelings of hopelessness and inadequacy.

2. A condition of mental disturbance, typically with lack of energy and difficulty in maintaining concentration or interest in life.

I however would describe it as a nasty snake that can creep in and wrap itself around you and it will easily consume you before you even know it is there.  This snake as I like to call it has had a major impact on my life for quite some time, now whether or not I want to admit it is a whole different story.

              Growing up mental health was not something that was talked about or even I feel accepted in my family.  If you were felt different you didn’t talk about it you didn’t go see someone you just dealt with it.  Now this may have been only my perceived impression of how it was handled, but then again this is my blog and that is how I felt!

              I think that there are many people who have a negative view of depression and that they feel that all I do is sit around my house in a robe eating and crying.  I can let you know that is not the case.  I get up I go to work everyday and I come home and spend time playing with my family but mentally I do struggle with this.  It is a challenge that I fight every day that no one sees, I wish I could let people see it because then I think that it would be understood more but sadly I can’t put a projector on my brain and let you see what is going on in there.

              It's funny in many ways how many people will say things negatively about depression without knowing that they are talking to someone who is dealing with the same illness they are talking poorly about.  It took me a while and a lot of encouragement from my wonderful wife Censie but I started seeing a therapist and it has helped.  Now it's not like walking in having an epiphany and then I am all done but it is an ongoing battle of ups and downs where there are days that I feel great and then days that I feel like total shit.  I think that having my surgery has been hard for me mentally even though I feel healthy I am still adjusting to having a bag on my stomach for the rest of my life.  So this is something that I will continually look in the face and know that it is a part of me but it is not something that will consume me for the rest of my life.  I need to be present for my children and for my family!

“Man is not worried by real problems so much as by his imagined anxieties about real problems”
― Epictetus

The definition of Anxiety is as follows:

1   A feeling of worry, nervousness, or unease, typically about an imminent event or something with an uncertain outcome.

2.  Desire to do something, typically accompanied by unease.

              Now I compared depression to a snake that wraps itself around you where now I will compare Anxiety a little pesky worm inside your brain hopped up on speed making sure that you worry about everything.  In my case I worry about pretty much everything at all times.  So lets recap I have a snake holding me down and a worm making sure that I worry about every small detail about everything.

              If you have known me for any part of my life you could probably easily see me as being a pretty anxious person.  I get really bad social anxiety at this point as well.  Some of my anxiety stems from IBD.  I would always worry about what if eat something that makes me sick, where is the bathroom, are people counting how many times I go to the bathroom, and do people think I am making myself sick?  Now I worry about is my bag going to pop off, do people think that I smell, what are people thinking about me? 

              I also have a strong desire to make everyone like me and I cannot handle thinking that people are mad at me.  My coworkers know this now about me and it has become a joke that someone is just going to come up and say they are mad at me because they know I will not be able to let it go.  I worry about how people look at me and if they are judging me or if I did something to make them upset.  I worry about what people think about how me, how I look how I act.  It's like running a sprint all the time in my brain and it can be exhausting at times. 

              Luckily Censie has stood by me through all of these challenges because my Depression and my Anxiety were exasperated these last three years in dealing with my Ulcerative Colitis. 

              I am writing this post not to get people to feel sorry for me but to make mental health more normal and show an insight into my world.  I constantly hear bad things about people with mental health or that we must be weak if we go to counseling.  I would say the opposite.  I think that it takes a ton of strength to go to someone and admit that you need help and that you need support.  I want to make sure that neither of my children ever feels bad about being down on themselves or being nervous but if it becomes a huge issue in your life then you need to go and seek out support. 

A Whirlwind of Emotions

WHY????

10/17/2012.  This has been a post that I have been trying to write since that date.  Sadly this is the day that that my Grandfather, or my "Papa" as he will always be in my heart passed away.  

Thankfully I was able to be present with him at his house with family and friends when he passed away.  This is something that was very hard for me but also something special for me to be there with him.  I know that he is no longer in pain and that he is at peace but as we know it is hard for the individuals left behind.

I went through my memories that day and I am continuously going through memories as we get closer to the funeral and with my family coming out.  I am very lucky to have been able to have my Papa with me for 31 years.  I remember going with him and my father to Baseball Card shows and he would always talk to me about the cards and help me pick out cards.   He always let us play with his little slot machine while we were at his house, I am lucky that he gave this to our family and it is now sitting in my house.  I remember when he would call the house when we had a baby sitter and they were freaked out because a robot was talking to him but that was just papa talking with his "talk box" that I called it due to having a stoma.  

I am very thankful that Jude got to meet him but am also saddened that he passed three days prior to Teagan being born.  I know that he is watching our family from heaven and I hope that he is proud.  

This is one of the pictures that I got of Jude playing with Papa.  This was after Papa had been sick but was still able to enjoy playing with Jude.  This picture will always hold a special place in my heart. I feel the tears coming up as I am writing this.  I got to see the smiles on both of their faces and see Jude get "buzzed" with the "talk box" he used to talk and remembered how it felt as a child to get buzzed by Papa.  

Papa will always remain in my heart and I will share stories about him with joy and happiness.  Every time I see poker chips, slot machines, sports cards and sadly the Raiders, I will think about my papa.  I am blessed to have had him in my life and I am glad to know that he is spending time with his dad up in Heaven and hope that he has found peace and joy.  I love you Papa!