Friday, April 29, 2011

New Rheumy, Chilblains, & Test Results

Thankfully my primary care doc was able to make me an appointment with the other local Rheumatologist (Dr S).  It wasn't much help with the flare up of my autoimmune disease that I was having at the time because by the time the appointment rolled around, my hands were back to "normal."  The flare lasted about a month and was awful.  But fine, he did see me.

He seems like a good doc.  Not the warm, friendly type but seems to know his shit about autoimmune diseases and hasn't come off as knowing nothing about EDS so I'll take it.  I explained about the extremely painful lumps I got on my fingers right before the flare up went to town and he thinks that I had chilblains.  Chilblains!  Shit!  Oops.  Apparently they are not uncommon for people with Raynaud's and that I need to keep warmer and use warm water, NOT HOT, to bring my hands back to life when they go all white and corpse-y.  Eek!   ...I will also completely stop my practice of squeezing the blood back up into my fingers when they take too long to come back.  My bad.

He had me run bloodwork since I hadn't had an autoimmune workup since going on plaquenil.  And I just got the results at my follow up and they're all good!  Woohoo!  All specific CTD markers were negative and even my ANA titer was only 1:160, down from my last 1:320 and way down from my initial 1:1280.  It's basically normal which Dr. S is typical when going on a drug that suppresses the immune system like plaquenil. 

In the next coming months, he wants to see how I do with halving my dose of plaquenil which to quote him, "Is a great drug...other than making people go blind."  So I go down on my dose in about 2 months.  He also gave me some prednisone to take in a small burst if I have another flare up so I won't be stuck on my own with nothing to help me.  Which is awesome.

Then there's this whole other thing with my insurance company that just NOW decided to tell me that they don't cover pre-existing conditions.

"But you sound young so that's probably not a problem for you."

Ahahahahhaahahhhahahhahaha.  Funny story.  About that.  WTF!!!???  So now I'm running around trying to get that waived.  Which is, in fact, so stressful for me that I can't even blog about it because I will just start crying again.  So that's that. 


  1. Sending you Hugs and Happy thoughts!

    You'd think that insurance providers, of all people, should know that "young" does not equal "healthy."

    Two questions for you: how long have you been with this insurance company, and did they specify "pre-existing" or "previously diagnosed" conditions? There could be a huge difference there, as a genetic disorder is obviously pre-existing, but may not have been diagnosed until later. (Yay for a rudimentary understanding of legalities!)

  2. Thanks for the hugs and happy thoughts!

    I just got this insurance in December. The woman I talked to was great--stayed on the phone with me to explain what I need to do. It's a 1 year waiting period for anything that has been treated in the 6 months prior to joining the insurance. Now, I don't really have any treatment for the EDS. I just manage on my own. But the last 1.5 years, I've been straight out seeing doctors for the UCTD and that's the disease that I take all my medication for and require regular lap work ups, EKG's, etc for. That's the one that's going to end up an issue. A big one.

    But as long as I get the paperwork I need from my old insurance, it will be waived. Now guess how easy my old insurance is making that? I need one fax from them that states my starting and end dates with their company. But apparently, that's damn near impossible. Oy.

  3. I just wrote a long comment but blogger wouldn't publish it.

    So in short I shall try hard to condense that which I wrote.

    It makes me angry to read over and over again of Insurance Companies appearing to make things as difficult as possible and therefore creating stress and upset to people who simply do not deserve to be treated thus.

    I cannot claim to even begin to understand the complex systems with regard to health care as I live in the UK. I know people here do complain about the thatNational Health Service and some do have the benefit of private insurance. But on the whole the NHS does provide and we are lucky.

    I fail to see how a supposedly civilised society think a system is humane which means that those that have get treated and those that don't do not. Its just shameful yet I read in the blogosphere of it over and over again.

    I can only offer my genuine empathy and a gentle virtual hug. I just wish I could make this stress go away for you and then you would need to shed no tears.

  4. Ugh! What a pain in the ass!
    I do like your use of the word shit and WTF :)
    They're fantastic adjectives, especially when EDS and other fun have created a shit-storm.

    Sorry to hear that you're having troubles with insurance and everything else. Stress-crying sucks, and they come with the worst head-aches.

    Please take care of yourself and be sure to eat something delicious. I think ice-cream makes the world a better place.

    Sending juju xx

  5. Thank you both of you. I really really appreciate the support. You have no idea. One day this will all be sorted out. Until then, swearing up a storm, it is then. :)