Nope. You’re wrong. You don’t win.

Results of FNA: NON-ANSWER.

The 4 samples taken from my neck were bloody messes and no one knows anything. A repeat test (fine needle aspiration guided with ultrasound) was recommended but that is a hard no from me.

Thank u, next.

Not the best way to start my Holiday

As some of you know, I am scheduled to go before the Disability Judge next week.  This date was postponed from an earlier date this summer because I had to get new representation.

Well, I received a call from my advocate (the new one) Wednesday morning.  He asked for my permission to request another postponement.  I was driving so I couldn’t hear nor follow very well what he was saying to me, but something about him “falling on his sword” and just having received over 1000 pages of my medical records.  All this information shoved down my throat on my way to celebrate my Thanksgiving.

I felt ill.  And, still do.

He’s known about this date for months.  In fact, since this summer when I retained him to represent me.  He mentioned something else about “not having prepared the brief” as he’d wanted to.  He had been slammed with hearings this past month.



Is this a sign?  Is this a sign that I shouldn’t be applying for Disability?  My doctors seem to be on board, but why isn’t anyone else?  I’m not making this up!  I have 2 brain tumors, a hereditary cancer syndrome where I’m at risk to get many types of cancers, I have severe headaches several times a week, as well as having had 2 brain surgeries and am experiencing many symptoms from all that!

I guess part of me understands having just received the medical records.  And, evidently the Judge needs to go through all that, too.  So, if it was just because of that, I’d understand.  But, he could have just been schmoozing me, too.  How would I know any different?  It’s not like I trusted him with the most important thing in my life.

I’m so confused.  I’m so scared.  IF the Judge doesn’t approve the request for postponement, then what?  He has to do it anyway.  Will he be ill-prepared?  This is my life we’re talking about. It’s not like I can find another advocate at the drop of a hat?  Hopefully the Judge will approve it, but then what?  I will walk in Wednesday with an advocate who hasn’t done enough to help me?

So as of today we know nothing.  I guess I’ll find out Monday.

Oh, and I’m still broke and destitute.

Did I mention that Lhermitte-duclos Disease and Cowden Syndrome have ruined my life?


Not a Motivation Monday

Most days, Cowden Syndrome and Lhermitte-duclos Disease lay pretty quiet.  Except for the constant doctor appointments and dizzy spells, that is.

I try to live as normal a life as I can.  I exercise as often as possible.  I volunteer weekly.  Yet some days my medical status screams its ugly head and I’m knocked off my feet.

This week, I had had the following scheduled:  New psychiatrist appointment, new neurologist appointment (because I was without care for a few months), and a colonoscopy and EGD.

I knew this week would be busy, so I tried to ready myself as best I could.  But it’s only freaking Monday!  Why are things coming unraveled already?! I received a call this morning from the neurologist’s office.  The “doctor” (I use that term loosely) was reviewing my case and decided that she would not see me.  You see, I had been under the care of another facility (within the same system, just a different city) but when their neurologist left the clinic I had to make other arrangements for my health care.  Just because I have welfare insurance doesn’t mean my health suffers needlessly.  I am my own advocate.

I explained the situation, but of course it fell on deaf ears.  I was refused care.  And, I 1/2 bet it was because she didn’t want to treat me.  2 brain tumors and another Rare Disease.  I mean, who’d want to touch me with a 10 foot pole, right?

I lost it.  I won’t go into details of what I told this young girl on the phone and what I think of this doctor.  I didn’t cuss.  I wasn’t rude.  Just very expressive of how the decision of this so-called doctor is affecting my medical care.  And, my Disability claim on top of that.

My life is in limbo enough.  Now, add this neurology fiasco and I feel even more defeated then I do any other day of my life.

Happy Motivation Monday to you all!



Will you help me raise awareness for Rare Disease?

Hi guys!  I am so excited to share this with you:

hopeforheather is raising awareness

Will you please consider buying a shirt if you can?

Thank you!