My Own Advocate

September27

toolsRight now I’m waiting for some extra pain meds to kick in.  I’m trying to tapper my Prednisone dose down from 25mg a day to 20.   It doesn’t seem to be going well.  After dinner that telltale Autoimmune Pancreatitis pain started up for the first time since I was in the hospital last.  Not good.  I’ve also been running low grade fevers in the afternoons.  I suppose I’ll be putting in a call to my Rheumatologist tomorrow.

I also need to call my Internist for an appointment to check out what seems suspiciously like a sinus infection.

And I have a handful of other medical related calls to make (including some especially dreaded ones to my insurance company).  It’s enough to make me want to go hide under the covers and go back to sleep.

I always tell people that you have to be your own advocate, but it can be downright exhausting under the best of circumstances let alone when you are sick.

But I, like so many others, don’t have anyone else to do it for me.  So I have to be my own advocate.  I have to stay on top of these phone calls and appointments and lab results and new symptoms.  But lately it just wears me down and out.  It’s a lot of stress and a lot of effort.  Mentally and emotionally.  It’s all in the details, and so much is at stake.

It shouldn’t be this way though.  When people are sick they should be able to just focus on getting better and not navigating through medical bureaucracy and red tape.  It scares me to wonder what would happen if I became completely to ill to do it for myself.  Who would advocate for me then?  There are so many people already in that very situation.  I shudder to think what kind of care they are getting.

There must be a better way.

In the meantime, I do what I have to do regardless of the brain fog making it hard to think straight and the fatigue making it hard to keep my eyes open.  Because I’ve learned that even though being a professional patient is a full time job, you don’t ever get to call in sick.

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5 Comments to

“My Own Advocate”

  1. On September 27th, 2009 at 10:23 pm Michelle Says:

    I LOVE that last line — so true! I’m months behind on my student loan deferment/forbearance paperwork, still hunting for a gyno willing to do a high(er)-risk laproscopy, and never do get to deal with big-picture health issues with my GP because I only have enough energy for the monthly pain meds and crises appointments — not to mention I’m rarely even awake during business hours most days.

    Healthy people have no idea how hard sick people work for their disability checks.

    Reply to Michelle

  2. On September 28th, 2009 at 10:45 am shannon Says:

    it seem like our system is designed to just let the sick die. I mean really the way things are going it is going to be even tougher to get health care. And right the healthy ones do not understand what sick people have to go through to get help. One closed door after another slammed in your face. bam bam bam. This society is out of balance and soon it will be like that show where the people are encouraged to die and there are suicide clinics. Its an old movie cant think of the name. but anyway keep fighting Belle, my prayers are with you
    shannon

    Reply to shannon

  3. On September 29th, 2009 at 3:32 pm Maz Says:

    If you are at the ‘end of the road’ and nothing has worked so far why not look at another treatment … ie AP therapy,

    There is a website devoted to this treatment path, a forum with lots of great and informed people willing to help each other & it is a place to get names of rheumatologists & doctors who use all the traditional treatments available as well as AP …

    You maintaining your blog so I am presuming that you actually like tapping into a computer system … it wouldn’t hurt to look at the site, the web address is : http://www.rbfbb.org/

    Let me know what you think after you read what it has to offer.

    You have nothing to lose !

    Good luck,
    Maz

    Reply to Maz

  4. On September 29th, 2009 at 6:02 pm Maz Says:

    Hi,

    I just missed you on the site,

    Glad to hear you are up to doing your own research and making your own decisions — it is important to be proactive in your treatment. If you feel like having a chat just let me know.

    Reply to Maz

  5. On October 11th, 2009 at 10:28 am Orphanus Says:

    I wish I had something more enlightening to say than “amen sister”.

    I guess I’ll go with a simple “I’m sorry”.

    I wish you a gentle piece of road ahead.

    Thanks for telling it like it is. I am always amazed by you brave folks blogging this stuff. With all you have on your plate…. I know what a herculean effort it is.

    Reply to Orphanus

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