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    1STATEOFDENIAL   151,134
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1STATEOFDENIAL's Blog Entry Summary View

No, I am not okay. I need to admit it and be okay with not being okay.

Tuesday, July 14, 2015      5 comments

My life is worse than a Dickens novel. It doesn't make sense, it is impossibly difficult, and for the most part I face it all alone. (The friends I have are mostly far away and no one is able to help with what I need the most help with. I don't ... Read more

Excellent article about Hypermobility Ehlers Danlos and functional somatic syndromes

Tuesday, June 16, 2015      4 comments

ctional-somatic/ Please, please, please take a few minutes to read this article. This is extremely well written, has good explanations (if you don't understand every... Read more

Finding $16 makes me feel bad.

Wednesday, June 10, 2015      6 comments

Yesterday I found $16 in a parking lot. I had been in my car for about 5-10 minutes and no one was around. Also, it was after some of the stores were already closed. I was pulling out and decided to turn one way instead of another (because of a ... Read more

American Ninja Warrior showcases an EDS Zebra Warrior

Wednesday, June 03, 2015      4 comments

The ANW episode from 6/1 showcased a man who is married to a woman who has Ehlers Danlos Syndrome. It's amazing to have such an ignored and potentially dangerous condition be featured on a show that highlights the power and perseverance of peopl... Read more

Dear Santa (this won't be the letter you're expecting)

Tuesday, December 23, 2014      8 comments

Little children are always told to be good so they get gifts from Santa at Christmas. They're told if they don't behave, they will get a lump of coal instead. This rule isn't really true, we know, because there are good kids who get nothing and ... Read more

Plagiarism is hurtful, disrespectful, and just plain wrong!

Saturday, May 03, 2014      6 comments

No, this has nothing to do with SP, but I'm angry and hurt that I've been plagiarized elsewhere. I want to say something about it here because maybe someone who's plagiarized in the past or might consider it in the future (even on a small scale)... Read more

Got my SSDI backpay! But my housing situation is a nightmare.

Tuesday, February 11, 2014      5 comments

Well, a little more good news. Tip: if you sign up for EFT (direct deposit) right away when applying for SSDI, your payment will come pretty quickly. I called the SSDI office today to ask some questions, and it turns out that they deposited my b... Read more

Surprise, surprise: my SSDI decision is in.

Tuesday, February 04, 2014      4 comments

I'm exhausted after spending the day doing... just doing. It's 3 am and I still have to shower before going to sleep and getting to an appointment at 2 pm to work on my advance directive again. But... I got a letter from SSDI today. The jud... Read more

Talked to my neurologist today

Thursday, January 09, 2014      6 comments

Called my neurologist's office today. I wanted to mention the concussion while I asked if I can keep increasing the gabapentin now that the side effects have stabilized at 200mg 3x/day. Strangely, he and his nurse are the first people to care at... Read more

Concussion & nonstop problems causing too much stress

Wednesday, January 08, 2014      3 comments

A week ago, on New Year's Eve, I got a concussion and it's really made everything else so much more difficult. With my conditions, as my dysautonomia specialist said, no matter how much they try to treat me, I will always be prone to fainting, l... Read more

I got really bad news about my sister

Thursday, December 19, 2013      5 comments

I spoke with my sister today and found out she's been having some serious symptoms for the past year and kept being turned away by doctors. (She lives in the small town in WI we grew up in, where the medical staff is decades behind in knowledge ... Read more

Results of testing I mentioned in my last blog

Friday, December 06, 2013      4 comments

I have an important decision I need to make, and it's weighing heavily on me. A few weeks ago I had testing done on my bladder. It was painful and sucked horribly. Yesterday I found out the results, and they're not good. The doctor believes the ... Read more

Update: too much bad, some good, and tons of unknowns

Friday, November 15, 2013      4 comments

I've had more hits since my last blog. Some "good" came from today, though it isn't good news, just validation of the serious symptoms that too many are denying I could be dealing with. I'll start with what's happened the past few weeks. I ... Read more

It's all just too much for me.

Friday, October 25, 2013      6 comments

The hits never stop. Today I was told my appt for next month with a neck/spine/SI joint specialist is being cancelled because he looked at my record and has nothing to offer me except "do PT" or "go to Mayo". Mayo is CRAP! The only people the Ma... Read more

SSDI hearing was a total waste of time.

Tuesday, October 22, 2013      4 comments

The best way to NOT give someone SSDI is to pick a doctor to speak against the claimant at the hearing who can't even pronounce the conditions, let alone know how they're diagnosed. That way they can say they don't believe you have the condition... Read more

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