Saturday, September 27, 2008

I'm Going on Disability - Smartest Decision I Have Made Yet

TUESDAY, NOVEMBER 06, 2007 10:43 PM

(More catching up on the past year and a half)
This is one of our engagement pictures my dad took at Greystone where we were married.

It was a beautiful day. We had a fun time.
Wedding Day. Another beautiful day.
This is towards the end of our honeymoon at St Lucia. I have about half of the hair I had when we started the honeymoon because it was falling out so fast.
This day I didn't even wash my hair because it was falling out so bad, so Kevin and I went to the market and stayed away from the Ocean where hair always seems to get tangled. I didn't need to worry about getting tangles out. I love the bowl we got. I think I have everyone caught up on pictures. Now, read on about my decision to go on disability....

I have decided to go on disability. I tried to work through treatment and have made it 4 months so far. Why?? Well, one reason is financial and the other is…....I don’t know. I think it was a form of denial for me. As long as I was working, the cancer wasn’t killing me. I put my wig on in the morning, exhausted, spend a ton of time painting on eyelashes, eyebrows, putting on concealer (to hide the dark circles under my eyes), then I drag myself in to work and put on my best smile so no one thinks I am sick. A lot of people I work with just think I dyed my hair and have no clue I’m fighting cancer. Not that I want them to. Well….sometimes I crave a little sympathy. Just to get a break once in a while.

No one at work made me do this and I have always had disability as an option. I thought I could do it, but things didn’t go as I expected. As I started treatment, I had to take on the workload of a co-worker because he was going overseas for a few months. I was asked if I could do this and I of course said yes. Yes, I could do this with my health as an expense. I put work first far too often. Before I got this additional workload, I knew doing my current responsibilities would be extremely difficult and tiring. Between chemo, tests, and the times I fall asleep because of the Benadryl I loose a lot of time at work. Everyone in my group has been overloaded lately, so I never wanted to ask for help. So, I would go to chemo and work with my computer on my lap and my phone next to me, fighting to keep my eyes open until everything goes blurry and I can no longer function and the Benadryl makes me pass out. I’d get home from chemo, exhausted, wanting badly to take a nap, but instead I would work. Then I would work late into every night and on the weekends to try to catch up.

When you are in the fight of your life, here are some things you know you need to do to take care of yourself……eat well, exercise, get lots of sleep, and get rid of all stress in your life. I am a very proud person and I have a hard time saying I cannot do something. I felt like going on disability was a way of giving in and saying “I can’t do it”. So, tough girl here went to work every day to prove to everyone and herself that cancer was not getting the best of her. I did everything in my power to let people know that cancer would not affect my work performance. It was tough. I wasn’t giving my body a fighting chance of beating cancer.

I was working days, nights and weekends. I didn’t work out, relax, or eat as well as I should have because I didn’t have time to. Not to mention, I was stressing like crazy, because I was trying to prove to my employer that I was just as efficient while on treatment. I would get email after email asking me to get something done and why I hadn’t gotten to it yet. People didn’t know my reason for missing work so much and always being behind, so I was always concerned that I was getting a reputation of being a slacker. I also got bloody noses (side effect of one of the chemotherapy drugs I get) all the time at work. I would be so embarrassed and try to hide it. I figured co-workers of mine would start thinking I have a cocaine problem or something and would be going to talk to HR soon. With my glazed eyes, the bloody noses, and absentmindedness they must have thought it was a dead giveaway. I had days where I was a wreck. I would come home to Kevin and sob. I knew what I was doing to my body, but I couldn’t give in yet. Crazy huh?

I met a girl who was speaking at an event for metestatic breast cancer patients. She was diagnosed with stage IV breast cancer at age 30. She was talking about the difficulties of being diagnosed that young, when your career is just taking off. It is hard to watch your friends go one way with their careers and you’re stuck in cancer world. I told her about my struggles with the work/cancer/life balance. She didn’t tell me anything I didn’t already know, but I needed to hear it from someone other than my own conscience. She said if I want to have a chance of beating this disease, I need to do EVERYTHING that will help me. Let’s be honest, having tumors on the liver is not a good place. I need all the help I can get. No liver – no life, you know what I mean? Kevin and I talked about money and agreed that we will figure out a way to make it work with the fraction of my income. Honestly, what good is money if I’m not alive?? Money or not, I had seen the light and I knew what I needed to do. I need time to HEAL. My work was not going to let me do that. So, I’m going on disability. Best decision I have made yet for my body.

I feel very good about my decision. It is crazy though. My work can and probably will fire me at some point if I don’t improve and show signs of returning to work in the next year. We do have a plan though. If I need to I can go on Kevin’s insurance (no pre-existing condition clause there) and we will pray it has as good as coverage as the plan I am currently on. I don’t know what we are going to do if his plan doesn’t cover PET scans or any of the other scans I need to get to figure out where to go next with my treatment.

I can’t blame my work. They have to follow the rules of disability and actually have one of the best benefit and disability plans compared to most companies. Most people don’t know the rules regarding disability because these situations don’t happen often. I didn’t know. Our country’s health care system is so messed up. My work is just following the rules. In our country you get health benefits through your job. If you get sick enough you will loose your job and at the same time your health benefits. Then, the sick person with the really high medical expenses has no health insurance to cover it. Sweet system. Who was the genius who came up with that?
Please don’t fret. I no longer stress about work which will most likely do wonders for my health (I will be done around Thanksgiving, but I am still being a trooper and transitioning all of my work so nothing gets overlooked). I am confident in my decision 100% and I think we will figure out a way to make it work. I am really looking forward to my full time healing. (more on that in the entries to come)

Oh, and I’m still feeling allright. Tired. Headaches at times. I cannot sleep much (another wonderful chemotherapy side effect). I’ve been doing a lot of yoga and eating really healthy. Lots of wheat grass, Noni and Thai Go shots (all super healthy stuff) I do need more sleep. I keep getting the “you look tired” comment. Even got one from Kevin tonight. The chemo makes me restless at night so I don’t sleep well. Our house is STILL for sale. Kevin is moving home the week of Thanksgiving. I’m moving home when the new house is ready to move into and we don’t know when that is (sometime between Thanksgiving and Dec 14th) I was on the news twice. Kevin was interviewed for a while too. We did the Livestrong and Komen races with my group the Pink Ribbon Cowgirls. I LOVE that group. Okay, so that’s all for now.

Take it easy everyone : )

Shannon

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