[SIZE="3"]Our So CAl TOS meeting went great. I have some thank-yous at the end I must provide. But after having given three of these, I did note some changes in our group that I felt warranted talking about.

First off, I've been sick just over 4 years, and I am an "admitted" case initially, (so much of what I'm saying would not apply to a denied case), and 9/03 was when I was taken off-work and into bed. I fought, and it took three years to get my right side surgery by Annest.

The way I did it was to stay within the work comp rules, get a diagnosis, get all of my medical reporting, and always give a full copy to each NEW doctor, so that their reports would be taken seriously. But at the time the insurance ignored us when it was clear we needed a good TOS surgeon - and we had our doctors all ask for Denver - they just ignored us. Now I could wait 6 months for a hearing, or, just pay myself to see Denver, and get those reports back to my work comp doc, and have him include them in his review, and the get an expedited hearing on the issues of surgery and repaying me for having to go out there. I ended up winning. They were ordered to pay back my receipts / bills, and, to immediately approve surgery and give me money for my lodgings and food while there. At that time, my RSD was raging, and had moved even to the back of my thighs, and my pain level was at the insanity level.

Now I am fighting the drug Lyrica, because although the best docs say it is the #1 way to fight nerve pain, I immediately gained weight with it, and got 30 to 40 lbs. fatter, than the 60 lbs. TOS had already put on me. I was obese. Then several blood tests showed HIGH blood sugar - which I'd never had - and I researched Lyrica on the net and that's exactly what I saw that it does. So I went off of it around October, and by Christmas I was 30 pounds less, and now I'm almost 40 lbs. less. I DO NOW have DIABETES thanks to Lyrica, and we're working on that. I'm also testing almost every day the requirements to get into UCLA's pain management requests from my personal doctor there.

So here's what's bugging me. Since our meeting - which I LOVED doing, and LOVED seeing EVERY single person, and I didn't want it to end - I've gotten some weird calls.

Some of the callls want to know why I have a health aide and they don't, and they want me to call their doctors / attorney, etc., and ask for them while telling them how I got mine. It's simple - you tell your doc you can't bathe and take after yourself, cook, etc., and he puts in his report that you need an aide, and then the insurance co. either gets it to you, ignores you, or denies you. IF it were something I needed, I'd want to be in front of the judge on that issue. If you can't - you're not work comp - then theres ssd / Medicare and hospice which is supposed to help us with that need. But I PERSONALLY cannot make those call for you, because I'm too sick.

IF someone appears to have gotten a better surgery - there's an odd reaction to thinking that way. None of us knows eachother's pain truly. Nor how much money we have to spend on our care, outside of the social system we have. And I personally think we should never feel any jealousy, envy or anger about someone else's care by comparing it to our own. We are all in this poop-basket together. And your care is mostly the result of how hard you have fought along the way - it's highly personal to each individual's case for healing, timing of care, etc.

The minute you think so and so is doing so much better than you is when they have a setback, or a car accident, or a death in the family, and then all of a sudden, your position is looking rather bright.

I know that deep in the heart of every TOSer is unlimited kindness towards eachother. I have received it! Many times!

There is no one from our meeting in particular who I am pointing out - the "crazy call" is not someone local, and I talk direct to each person, so don't wonder or bother with this. The point is, no one should be jealous of another TOSer's spot in treatment, because it sure can flip, and there aren't any guarantees! Just keep using us as examples of what we might try next...get FIRED UP!!!

Hi Tam,
I want to thank you from the bottom of my heart.

I am learning to say no, and set healthy boundaires for myself. Most of my life I have been a hairdresser I know it's not the same as a lawyer, but people have always thought and asked for me to do their hair at any moment. These are including my friends that are well.

Also the last thing you need is crazy calls. If I was you I would change my number.

I really am learning to learn my limits so I can get on my way to at least being able to cook for my family.

If I was you I would not allow any me-ish type person to drain you in any way. God Bless You, Roz

Thanks for understanding what I was trying to say -


And still loving me!