The Most Difficult Decision Yet...

What is the most difficult decision you've had to make in your life? Is it marriage? Divorce? Children? Something job related? A health issue? Maybe surgery? Buying a house? Letting go of your house? Deciding to not let someone be in your life anymore? Dealing with the death of a loved one?

For me it was the decision to go on full LOA. Since graduating from nursing school, work has been a huge part of my life. I take pride in my nursing career. I worked hard to get where I'm at. I had plans to go on and be a nurse practitioner in family practice. I love doing what I do. How many people can say that?

My symptoms have been worsening over the past couple months. I wish I could say I didn't see this coming, but I knew it was. At least some where deep down in me I knew it was coming. I did try to deny it for a long time. My call-ins had become more frequent and it's been impossible for me to get out of bed most days. Then there's the memory problems, headaches, and lovely new symptoms. I remember the last time I was at work, I was so miserable pain wise, I had a bad attitude. I never have a bad attitude at work. Between not being at work for almost two weeks and feeling like over all poo, this is when I really started to look at the possibility of full LOA. Another Behcet's reality had struck me.

The guilt of calling in and the stress of trying to make it to work was horrible. Now that I am on leave, it is less stressful but unfortunately hasn't changed my symptoms. I've had new ones pop up and old ones worsen. Damn magical grab bag of Behcet's. It's never ending some days.

One of the hardest part of this for me is the changing from a go-go-go type person to laying around the house. I've slowly gotten use to it since being sick but now my social interaction is gone. Or at least decreased. I still have my family on a daily basis. Thank god for social media and the support I get from my BD girls on face book. Some of you might say find a hobby. Well it's not that easy. When you feel like shit most days all you can do is lay around. If I was feeling well enough to have a hobby that required me to do something other than lay in bed, I'd be working. Netflix has become my hobby. Thankfully I'm a movie kind of girl. If you weren't a movie person before getting Behcet's, you would become one after, trust me. I have my writing but I'm not always well enough to do that either.

Another thing that is seriously messed up about this whole situation and trying for disability is money. How the hell do they expect people to live? I have long term disability but it takes 90 days to kick in. So basically for me there's a 3 month waiting period without money. I won't even get in to how long I think it's gonna take me to get actual disability from the state- I've heard anywhere from 3 years to 7 years it takes people with Behcet's, sometimes more. Now what about others who don't have long term disability through their work? I'm getting pissed off just thinking about what people have to go through until they get disability. No wonder people end up on the streets or living with family. I hope and wish for a faster way for others to get disability who have to deal with this. Remember stress only makes our symptoms worse. Dealing with money problems is stressful for anyone but multiply it by 100 with a disease like Behcet's.

Oh yeah, let's not forget about health insurance. After 3 months my health insurance is gone unless I pay cobra. We all know how ridiculous cobra costs. Then from what I remember before I can get Minnesota medical assistance, I have to be without health insurance for 3-4 months. So basically I'm fucked if I get sick. I say that because I will have to pay out of pocket. Do you have any idea what it's like to pay out of pocket for a doctor's visit? And we have idiots here who think we don't need health insurance for everyone. Yes we do folks! Don't get me wrong I don't want the government in our lives anymore than you, but some things we do need. [Note: I'm not endorsing any political party. I would like to keep politics out of my blog:)] Try getting a disease like this and live without health insurance. About 10 years ago I was nursing school and was at a job where I didn't qualify for health insurance. I developed an urinary tract infection-severe enough I'm lucky I didn't end up in the hospital. Do you have any idea how much it cost for those antibiotics without insurance? $125. How much for the office visit and labs? I don't recall but I can tell you that office visits right now run around $300 on average minus the labs. Now how can someone afford this when they are not working, waiting for disability, and have no cash coming in?

As you read this, I hope you understand that those of us with Behcet's do want to work but the disease can make it impossible for this to happen. My only words of wisdom for tonight are to be happy with what you have- Job, health insurance, your health, house, etc., because you never know when something like this will hit you and you'll be left without this stuff.

"We tend to forget that happiness doesn't come as a result of getting something we don't have, but rather of recognizing and appreciating what we do have." Frederick Keonig

Note: This post was started way back on 4/4/12. I'm a bit behind with my posting on account of feeling like poo and being engrossed in The Hunger Games trilogy:)