Friday, October 29, 2010

WHAT DO YOU DO WHEN IT COUNTS?

Well, I was just going to write one of my regular pseudo-crazy posts, which means a post like every other day of the week, until I found I was showcased as Blogger of the Week here. That sent me into a brain spin. You don't want people who have never read your blog subjected to your normal every day crazy stuff. However, it is an awful lot of work to try and trot out something else when you're going to revert back to the same old, same old come Sunday. I have my Magic Music day tomorrow, which is a totally different level of insane altogether. It is more fun crazy.

So, to catch the new people up, I suffer from a lot of chronic illness, the worst of which (most of the time) is migraines. I am in the process of filing for SSD, since I have had THIS migraine since January of 2003. Yeah, that wasn't a typo. The source of the migraine was my ex-husband. By the time I got rid of him, I didn't have the health insurance to get rid of the migraine. Life is just filled with irony. I tried living a life of no stress for four years. If anyone finds one of those, please email me the location so that I can go there, because I have yet to find that. My doctor says three years of zero stress will cure me in lieu of no insurance (or crappy insurance, which is what I currently have). Along with good diet, vitamins, and some Rxs.... I was able to manage all of it but the zero stress, so I am still here with the chronic migraine and filing for SSD.



I did give it the ole college try, though. I really didn't want to file for SSD. Really really really didn't want to file. We are at the Land of Last Resort. Not a pretty place people. *Breathing in and out slowly* However, I have become accustomed to living with my mother and step-dad. Been doing that since 2006. Don't ever say you won't go home again. You just never know. Parents, no matter how successful your kids become, don't breathe easy. They can lose it all and move back in on a dime. Stand ready and be prepared. This is another blog that isn't going as planned.

I call what has happened to me "falling through the floor." All of this chronic stuff that I have going on really tracks back to my failing adrenal gland, and an extremely weakened immune system. I was treated for years by various doctors for the migraine alone, because it was the most acute symptom that I had. When your head feels like it being pounded in by an anvil, it is pretty much all you can think about. However, none of the traditional migraine meds did anything to alleviate it. That didn't stop the doctors from prescribing the stuff, though, or digging any deeper into the root source of the problem. Eventually, I changed doctors (repeatedly). Even I knew that if the meds weren't working, something else was wrong. By the time I got to a doctor who agreed with me, I was really close to falling through the floor. I financially fell through the floor at the same time she correctly diagnosed me. That was a bad news/good news situation. I finally knew the answer, but I no longer had decent health insurance to solve the problem. It is tempting to curse right here, but I am really trying to quit.

Instead, we went with generic Rx (as few as possible), the best vitamin choices, and that stress free life (yeah right). I moved to FL, and in with my parents, and tried to find that stress free existence. I am a freakin' magnet for stress. You can read about it in my previous blogs (or not). I mean who really wants to read about that crap? Not me. Head hurts thinking about it. But, it is all right there for your whatever. Most people shake their heads and leave comments like, "Why Robin, why would you get involved in that mess?" Yeah, like I have a good answer for that. Dumbass comes to mind. And there went the cursing. So, no, I didn't find the stress-free idyllic life in Florida. And things got worse, hard to believe (I know), when we all moved back to Georgia. So, that is where we are. No, I don't really live here. Nice house, though...



Everyone should be up to speed. Yeah, this blog is finally starting. I will try to keep it short. All of this mess has made it very clear that there needs to be a website out there of doctors who actually LISTEN, TREAT THE ROOT OF THE PROBLEM, and THINK OUTSIDE OF THE BOX or THINK ALTERNATIVE MEDICINE WORKS. So, I bought a domain name after weeks of writing down domain names searching for just the right one. It was somewhat excruciating. The goal is to actually start a non-profit organization with this mission statement: to assist people in their journey from illness to wellness. Short and sweet, right? According to Peter Drucker all non-profit mission statements should be right to the point, and something that everyone can claim to be theirs from the volunteer to the CEO. The long-range goal (as long-range as I can see it right now anyway) is to build houses all over the US for people who have fallen through the floor, but didn't have family, like I did, to catch them. There are a lot of people who have been misdiagnosed or undiagnosed. These are working people who get sicker and sicker until they lose their job, their health insurance, their house, and become homeless. Why are they homeless? Because our healthcare system let them down. Hopefully, the site will stop many people from falling through the floor. But, we have to do more. We have to pick up the people who have already fallen and give them the tools to get well and get back to work. I believe in this site. I believe in the people of this country. One day we will be building houses for them. You heard it here first. I hope that you will be one of the people who helps to make it a reality.



So, one day fairly soon, you will be seeing something from me that will be in the form of an email asking for doctors who meet this criteria. The site needs those names. And it will ask you to copy/paste that email and send it to everyone you know. We want to help people all over the US, and the only way we can do it is if the email travels all over the US. That is the first stage of getting this project off the ground. I have decided that I can be sick and not make a difference, or I can be sick and help other people. I am voting for the help other people. I hope that you choose that, too.

9 comments:

  1. Robin- You are so brave to put yourself out there like this, especially with everything you are going/have gone through. With heart like that, you will surely succeed.
    Oh, and thank you so much for taking the time to support my blog. I appreciate the effort that you put into everything you do.

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  2. thats awesome to be a featured blogger i went and commented on her blog as well..
    Robin, Migraines are awful I went to a place here called the headache care center where I learned alot about them first you need to find your triggers STRESS is way up there.. also mine are sweetner's of any kind and caffeine and strong smells they get me everytime (I did find light perfumes I can wear and light scented candles I can still burn) I used to give myself shots which they taught me how to do and they helped I haven't taken one in awhile since I have been staying away from all those triggers...if that doesn't help filing for SSD is not a bad thing it just takes forever..even with a head injury, PTSD, anxiety and depression, plus all the injury's I sustained it took a year so if your thinking about filling do it NOW!!! your blog deserved to be a featured blog your awesome!!!!

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  3. Great post! Thanks for the link back and I totally feel for you being on that medical merry-go-round.. I'm riding it with you. My cancer was caught at stage 4 and it took THREE years for SSI and Disability to FINALLY come thru! It is CAH-RAY-ZEE!! I went from an able bodied single Mom raising 4 kids WITHOUT WELFARE OR CHILD SUPPORT, excellent job with excellent benefits to now, via, Disability and Medicare, being treated as less than human in the medical world - for the most part. - I did search high and low for top notch dr.s and EVENTUALLY I found them and are quite happy with them. Life is once again on even keel but I will never be the person I was.. You never are, no matter what the illness.
    Interesting about your adrenal glands.. My youngest was born with non-functioning adrenal glands (CAH), they're there, they're just dead and he will take medicine for the rest of his life..
    I'm sorry you're going thru this but if it helps, you really are not alone.
    Thanks again. :)

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  4. "I have decided that I can be sick and not make a difference, or I can be sick and help other people. I am voting for the help other people." Way to go Robin.

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  5. Robin: I love your regular pseudo-crazy posts. I also know that sometimes in life people (never me) allow themselves to be hurt repeatedly by the same offense - or a dumbass. Let it go. Maybe the migraine will vacate the premises as well.

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  6. Congrats on being showcased! That certainly had to make your day....looking forward to that "day"...Have a great weekend my friend

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  7. Great post! I'm a new follower. Would love for you to check out my blog and follow back!!

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  8. great post..and I don't know a single doctor like that because I have government doctors. that is the sad truth.
    But I know you will get this moving soon. I believe in you.

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  9. Robin,
    First, Heartfelt Congrats on being featured at Woman In The Midst: Raw! She obviously knows good people when she sees them. Brain spin or not, you totally deserve it. If you're like me, you're probably stressing about how to "live up to it". Don't. You're doing a damn fine job as it is.

    Having been on the medical merry-go-round myself(for just under a decade), and having been through the whole SSDI nightmare, I know that stress isn't exactly packing it's bags and getting ready to move on just yet, but you'll get there. People who are as smart and determined as you can't fail when they put their heart and soul into something. And you, my dear, do just that like few people I've met.

    I'm one of the lucky ones who after years of being mis-diagnosed and treated like a sub-human, was able to finally find a doc who gives a damn and who actually listens and is pro-active and who takes his oath very seriously.

    I'm always heartbroken when I read or hear about someone who is flailing around in medical no man's land like I once was. Makes me wish I could clone my doc and send him in a neat little package to people who need someone like him in their corner. So I get it. I understand your mission statement. Very well.

    I'm not really sure what I can to help your non-profit get off the ground, but if there's something that I can do, just let me know and I'll be glad to help. I can't promise miracles, but I can promise that when I believe in something or someone, I'll always try like hell.

    Being sick and helping people isn't really always an easy thing to do, but I belive in what your doing, and in you.

    Peace and Blessings,
    Martha

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