Taking a Stand


Sometimes in the face of adversity you just have to stand tall.

Red blood cells
Image by Ethan Hein via Flickr

My doctor woke me up on Sunday morning to tell me that I may have a blood disorder – Polycythemia. Unless there’s been a mistake either with the lab or the blood draw itself, I am making too many red blood cells and my iron is much too high. He was hesitant to tell me what might be causing it, but if the repeat test I got today still comes back high he wants me to go see a Hematologist. I looked it up myself and the possibilities of the causes are rather frightening… ranging from cancer to a terminal illness to kidney disease.  Needless to say I’ve been feeling rather anxious about it.

In addition, I’ve started tapering my Prednisone dose again post face drooping.  My neurological symptoms of my brain inflammation have been coming right back.  My tremor especially has been so bad I am having trouble doing simple tasks.  It’s so frustrating I just want to cry.

So this evening talking to Melissa, my caregiver, about it I broke down.  I’m so tired of it being one thing after another!  It’s two steps forward one three steps back.  So I decided to take a stand.  Literally.  I wanted to see how long if at all I could bare the joint pain I get while standing.

Walk Again!!!We turned my wheelchair around so I could use the back of it to hold myself up, and Melissa sat in the chair to help weigh it down so it wouldn’t tip.  Trembling I slowly pulled myself to my feet.  It was agony.  But I shifted my weight until I found a bearable “sweet spot”.  And then I stood there for a over a minute!

It was excruciating and exhausting.  I needed to lay down afterward and take some extra pain medication.  But the victory was well worth it!  I stood for longer than I’ve been able to in over a year! I showed my illness who is boss!

I still have high hopes that the Sjogren’s specialist I’m seeing on November 9th will have some new treatment options for me that will significantly help my joint pain and neurological symptoms.  But in the meantime, I will continue to take a stand against my illness.
Inner Self

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5 Comments to

“Taking a Stand”

  1. On October 20th, 2009 at 9:50 pm Pixie Says:

    Proud of you. Always.

    Reply to Pixie

  2. On October 21st, 2009 at 8:50 am Denise Says:

    God Bless You! Stay strong and fight!!

    Reply to Denise

  3. On October 21st, 2009 at 9:07 am Katgirl Says:

    Congratulations on standing! That is a huge obstacle to overcome. Hopefully it will become easier with more practice.

    The only thing I can say about the polycythemia is that it really sucks. I know all to well about the onset of one new problem after another. It can be very difficult to remain optimistic. I hope your Sjogren’s specialist has some new ideas. Best wishes!

    Reply to Katgirl

  4. On October 21st, 2009 at 1:48 pm Shannon Says:

    Yo sissa I am so proud of you and how you always reach that next level of courage and persistence. Of all the people I know and have known, I have very seldom have come across such a wonderful person such as yourself. Be very proud of what you have achieved and what you continue to do! I am praying for you as always! Belle did you do that picture of the wheel chair and fairy? If so your drawing has leaped to new heights. I love your use of imagery. I want to encourage you to write a book on your life if your not doing that already. Brave Brave Woman!!!!
    You are very inspirational in my life!!!!

    Reply to Shannon

  5. On April 14th, 2014 at 11:24 am Pain-blog Carnival, December 2009 | How To Cope With Pain Blog Says:

    [...] Novel Patient discusses taking a small – but significant – “stand” against her chronic conditions. [...]

    Reply to Pain-blog Carnival, December 2009 | How To Cope With Pain Blog

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