Tuesday, October 15, 2013

Doctor Follow-up

The biopsy confirmed. Dermatomyositis.

The doctor was not impressed with my lack of improvement. He wants to start on immunoglobulin IV treatments in 2 weeks. Upped my med dosages in the meantime. Insurance is an issue of course... Expensive stuff.

I need to either get Cobra at $510.00 a month or hope Access comes through. The treatments are supposed to start in 2 weeks. Two treatments a month for like, a year or some junk. $10,000 a pop, apparently.

  • Intravenous immunoglobulin (IVIG). IVIG is a purified blood product that contains healthy antibodies from thousands of blood donors. The healthy antibodies in IVIG can block the damaging antibodies that attack muscle and skin in dermatomyositis. This treatment is given as an infusion through a vein. The effects of IVIG are beneficial but don't last very long. Repeat infusions every six to eight weeks are often necessary.

Wednesday, October 09, 2013

Red Tape No 439

In the legacy of the great band Chicago, that's the title of my new hit single.

Anywho, called United Healthcare  on Tues, Oct 8, 2013 to see if I can move the COBRA process along.
I was informed that the process hasn't been started because I am still covered by United Healthcare. When I asked if there was an end date or a cut-off date, I was told, "no".

So I went to my pharmacy and bought the meds that have been waiting for my money and sure enough, co-pays were the same and everything. Nice. Hopefully it holds out until the 15th and my followup with Dr Sivakumar. Somehow I think not.

Especially since I hung up the phone and walked to the mail box and found a letter from United Healthcare and Cobra informing me that a "qualifying event" had occurred (I got laid off) and the paperwork can start moving.

So yeah, United Healthcare says I still have healthcare insurance and that it hasn't been cancelled, but I receive a letter predating the live phone person's statement by at least two days...


I also spoke to someone at unemployment. She asked me some questions and said I'd have an answer on Monday.


Also called my attorney, as they had sent me a welcome package with lots of info and a page that started "when to call us". One of the things on the list was "SS sends you new paperwork". I received two requests for info. I told this to Vanessa, my legal assistant, and she said I should just fill them out and mail them. One of the forms was about how much I had taken from Worker's Compensation.  To the best of my knowledge, I've never applied for nor received Worker's Compensation.

Monday, October 07, 2013

Thursday, October 03, 2013


Stinky is my friend Colleen's daughter Halle's favorite toy.

Wow, that's a mouthful.

Stinky is stinky. I'm sure his name wasn't originally Stinky. This is a name you grow into.

Anyway, the crafty ones are crafting up some Stinky stuff to showcase the wonders of Stinky.

If you would like your very own Stinky, with the added bonus of knowing you helped me pay for mah meds, here's a link to the digital file on Etsy. These little pictures are fine for smiling and pointing at, but if you want to color like a boss with no nap time, download the set of five for $5. They're fairly large for printing purposes.


Wednesday, October 02, 2013

My Giveforward Campaign

A friend set this up for me after I lost my job and healthcare a week after being diagnosed with a rare, disabling disease.

Get Ideas for Your Next Fundraiser