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    1STATEOFDENIAL   151,020
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Vascular specialist today & SSDI hearing tomorrow

Tuesday, October 22, 2013      1 comments

Tomorrow morning is my SSDI hearing. I have no idea how I'm going to make it through the hearing. I'm not even sure if I'll find out a yes/no tomorrow or if I have to wait for the official judgement. My hearing starts at 9:30, but have to be the... Read more

Having an unprofessional doctor is not good.

Thursday, October 17, 2013      2 comments

I have 5 appointments with the orthopedist this month. One was last week and I had another today. The doctor I'm supposed to be seeing isn't even coming into the room (the first appointment with "her" weeks ago she came in for 10 minutes and hav... Read more

I'm totally shattered and broken

Wednesday, October 02, 2013      9 comments

WARNING: Don't read unless you have a strong heart. My pain has been poured out into a mess below. I've reached the end of my rope. I've hit the limit of things I can deal with. My ARMHS worker was on her way and my lawyer emailed me asking... Read more

Then there's that moment you realize it can get worse.

Monday, September 23, 2013      7 comments

Today's actually worse than yesterday, but in a different way. I feel like I'm coming down with the flu all of a sudden. I don't ever get colds or the flu; I don't even crack a fever for more than an hour for anything (my immune system is really... Read more

To say I've had a hurtful day is an understatement.

Sunday, September 22, 2013      4 comments

I've just gotten slammed with a bunch of bad today. Over a month ago I fired my LTD lawyer. She was spending far more time telling me there was nothing she could do than fighting my case. She had excuses for why it wasn't worthwhile to hold... Read more

5 steps to best deal with pain

Monday, September 16, 2013      3 comments

This link is on the Ehlers Danlos National Foundation website but it is not specific to EDS and could be used by anyone who lives with chronic pain and frequent bouts with acute pain. www.ednf.org/index.php?o
ption=com_content&tas... Read more

The fun of trying to do chores with Ehlers Danlos

Monday, August 12, 2013      4 comments

The person who was coming to help me is apparently not coming anymore. So tonight I did some chores. It's been 6 weeks and things really needed to get done. Also, I'm seeing the new neurologist for the 2nd time tomorrow (the one I had to email t... Read more

How to be a contortionist... I am a zebra.

Monday, August 05, 2013      7 comments

(Yes, my blog title is to get your attention; but, if you stick with me for a moment you might understand why I wanted to grab your attention like this.) Have you ever seen a contortionist? They bend and move in 'freaky weird' ways that loo... Read more

Sometimes, no matter how horrible I feel I have to put my kitty first.

Monday, July 15, 2013      12 comments

I often wonder if things will ever get easier on me (it'll never be easy, but any easier would be helpful). Today was a harder day, for sure. I sent an email to the new neurologist because I really feel he didn't do a good job when I saw hi... Read more

This week has been hard on me.

Thursday, July 04, 2013      6 comments

Today is my 1,000th day on SP. Every day for the last 1,000 days I've logged in and participated in a variety of actions. Even when I was in a different state for doctor appointments, tests, and procedures or in the hospital, I signed on every d... Read more

Have you ever done bicycle touring?

Saturday, June 29, 2013      4 comments

I sure haven't and never will due to my disabilities (and it doesn't interest me). But a few of my family members have done several bike tours around the US. If you'd like to read up on their adventures, check out their website: benthub.c... Read more

Another up and down day - new GI appt & a scary incident!

Thursday, June 27, 2013      7 comments

What an up and down day, again! I met with a new gastroenterologist today, who was pretty good. He listened to me, paid attention, trusted what I said, and we came up with a plan. I'm going to have another endoscopy for a biopsy to see if the eo... Read more

OMG what a roller coaster day!

Wednesday, June 19, 2013      5 comments

First, I wake up with an email from my LTD lawyer who is saying the Hartford is being jerks again and breaking contract rules and laws yet again, but after 6 months they're STILL working on part of my claim. Then, I go to the orthopedic app... Read more

An update, plus a difficult day with a scary incident

Thursday, June 13, 2013      5 comments

I started typing about my day in a message thread in a team, but realized it was getting very long. I should probably also use this time to update people with what I'm currently dealing with. So I'll update then talk about the insane and scary d... Read more

Come to my Sparkpeople birthday party!

Thursday, June 06, 2013      12 comments

Today (Weds, June 5th) was my 32nd birthday. Last year, I threw a pool party here on SP to celebrate, and I want to do something similar this year. I'm posting this late in the day, but the beauty of an SP party is there's no start or end time, ... Read more


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