Day One.

I decided that I'm going to start blogging. There is so much I want to share day to day or even just remember that it seems this is the logical step. For the last few years I have been spending my downtime on message boards, keeping up with people who I will likely never see in real life, nor will they ever meet me. I decided that this is putting out a lot of energy into something that will never really pay off. It makes more sense to invest that love and energy into real life people that I have lost track of, or friends I haven't connected with on a regular basis.

So I started Facebook-ing. I love Facebook, but I think blogging will be a nice addition to that. Something that came about with joining Facebook was my reconnection with the Ehlers Danlos Community. When I was diagnosed, I embraced the EDS community and joined many groups, listened to many other EDSers day to day struggles, and even quarrels within the community, I was absorbed. My diagnosis was so fresh, and I guess I was wallowing in it. I hit a very dark point in my life soon after. On the way back up, one thing that I did was distance myself from the rest of the EDS community. I haven't talked to another EDSer for years. I needed that, because I didn't want to think or concentrate on my disorder. I thought I needed to overcome it by ignoring the fact it was there. I mean, I knew it was there- the pain would never let me forget that fact, but I needed to focus on my goals and not on my disability.

Now however, I feel stronger. I don't feel sorry for myself, I'm not wallowing in self pity, mourning the perfect future I will never have. I have children that also have EDS, and I need to advocate for the cause, for all of us.

I've been very sensitive to people thinking that I was "faking it". That there was nothing wrong with me, that I was just lazy, or something like that. People just don't understand this disease. They don't understand how one day you can need to be in a brace and the next day not need it anymore. Or that you might need a wheelchair when you go somewhere but you might not need it the whole time. They tell me that you don't look "sick", you are too pretty to be sick or disabled, or that disabled people don't have children. Then you get caught up in that- I don't want to BE disabled. But I don't want people to think I'm hamming it up either- and I want to be able to use the aides (braces, wheelchair) I need without feeling self conscious. I don't want to LOOK sick. I never have. I want to be ME. Whatever that is.

So that is my goal. I'm going to find a new doctor. My doctor has been horrid to me for years, but I have just taken the bumps and moved on and tried to not deal with him. Unfortunately, that's not really taking care of myself either- because in doing that I have been skipping a lot of important tests for years that are really important for my disease. I'm going to take better care of myself, by starting with a doctor that I respect and respects and cares about my health.

I've started working out and trying to get serious about losing weight. The weight I put on when I was pregnant with Giovanna just never came off and I can't carry around extra weight with my loose joints. It's really made it ten times harder for me to get around. I'm trying to build up my muscles to support my joints better. I want to look and feel hot again. I want my body back. I miss it.

My new years resolution this year was to take better care of myself. I have been putting everyone else first for so long, that I have just run myself into the ground. What I have found is that by putting myself first I have more to give to everyone else. That old addage is really true. It works. I have been feeling so much better in fact, that I have been thinking about what makes me truly happy. I have decided to go back to school.

Family has been encouraging me for years to go on SS disability. I did file, but I was denied right off the bat (which is expected, especially with a rare disease) and well, I just didn't really fight it. It's really been a problem between Aaron and I, because we really needed the money. I just felt like going on disability was giving up. I want to be something. I want to be proud of myself. I want to have an income, I want to be the best at something. I want something to look forward to, to work towards, to aspire to. I need to have excitement in my life.

So, I've decided I want to go to Esthetology school. I started when I was 17, and dropped out because of a psycho stalker boyfriend and a totally depressive breakdown. I have kicked myself over and over for years for not finishing, but I remind myself, if I hadn't made the decisions I did, I wouldn't have ended up where I am. Which, is a pretty good place. I married the love of my life, and have NO regrets there. And of course gave birth to the best four children in the world. I couldn't have done better there. I have gotten to stay home for the most part and be with them, which I wouldn't change for the world either. I figure I will start my career when Giovanna starts kindergarten. I'm hoping to do claim processing from home starting later this year if everything works out. Then I could have an income and still be here with her.

Well, that's all for today. I have to go workout (Yoga Booty Ballet today- Advanced Fat Burning) clean, make phonecalls, and run to the store, pick up the boys and do a ridiculous amount of laundry and dishes. Oh and I'm going to try to get a decent picture of myself that I can stand for here and facebook, do my and Gia's nails, and hopefully finish off the play teaset project that I've been working on for an insane amount of time so I can get started on Giovanna's Easter dress. Then make dinner, counsel children, pick Aaron up off the floor after work and get everyone to bed. Shewww. I'm already tired! LOL