Health Update
Some folks have been kind enough to write in asking about the status of my health. I suppose it’s time for an honest update. Part of me wants to keep this entirely to myself, but if I am given the chance to recover and complete my PhD, I will spend my life as an active advocate/helper for others who face similar challenges. So perhaps it is best that I speak up.
In addition to the emergency abdominal surgery that nearly “closed my peephole” (Kurt Vonnegut’s eloquent euphemism for death), and another serious abdominal surgery looming in the future, I’m stuck with an outrageously severe case of Central Pain Syndrome.
Central Pain Syndrome (CPS) is a neurological disorder consisting of agonizing pain signals of many differing types at once: burning, freezing, shocking, aching, crushing, spasticity. It has been characterized as the worst pain known to man. It is caused by damage to or injury of the Central Nervous System (CNS), which includes the brain, brainstem and spinal cord. (Source)
There is often severe, unremitting nausea causing constant vomiting. The pain can bring on hyperventilation. Blood pressure can rise due to the pain…Pain is typically constant, may be moderate to severe in intensity, and is often made worse by touch, movement, emotions, and temperature changes. (Source)
Some people with CPS only have certain limbs affected. Mine is all encompassing, and extends throughout my entire body. Consequently, my hands hurt too much to type (or be of any use, really…even to hold books, which is the worst!), my jaw hurts too much to speak or chew, my tailbone hurts too much to sit, etc., etc., and I spend my days writhing around on heating pads and ice packs looking for some less agonizing position, failing to find one. I have tried well over 100 medications, supplements and nearly every complementary therapy out there.
The pain is comparable to the final stages of metastatic cancer…yet as a condition is far less understood, acknowledged and respected. I cannot blame physicians for being intimidated by a beast of such magnitude! Our search for treatment continues…
If things go as planned I will finally get to check into a hospital for inpatient pain treatment in the near future. Please keep your fingers crossed for that. In the meantime, I will have to keep my commentary at a minimum.
I truly appreciate all of the people who have stuck with this blog, made comments, or sent messages. I am NOT giving up on taming my central nervous system and rejoining the human race. There are truly wondrous stories trapped in my head, waiting for expression! I have immense love and support, for which no words adequately convey my gratitude…and I have incalculable love left to give. I’ve tried very hard to keep this blog alive as it is one of my few tethers to the outside world, and I will do my best to continue.
If you would like to guest blog, please contact me and let me know.
All the best,
Dana
SheWalksSoftly 
July 25, 2013 at 7:50 pm
Love you like mad! Fingers and toes crossed… xoxox
July 25, 2013 at 8:16 pm
We are praying like mad for you, sweetie. Hang on & remember WE LOVE YOU!!
July 25, 2013 at 8:38 pm
( )
July 25, 2013 at 9:34 pm
Sending you love and all the hope in the world for healing…~~~~~~
July 26, 2013 at 4:35 am
I wish you only the best Dana. 🙂
July 26, 2013 at 4:39 am
That above comment, “Wish you only the best” was from me. Oops! I managed to not log in correctly before I commented.
July 26, 2013 at 4:39 am
I’m horrified that you’re going through something this devastating! You’re amazing, not only for keeping up with your kick ass blog, but for struggling through this, working towards recovery, and keeping your spirits up (because if I were in as much pain as you, there’s no way I could be as humourous and eloquent as you are in this post). My thoughts are with you, girl. xoxoxoxo
July 26, 2013 at 5:59 am
Your body is not being kind to you, but you will get past this and do what you set out to do. What you hope to do. We all need you. The world needs you. Love you!
July 26, 2013 at 11:50 am
I never know what to say about all this, it’s terrible to think of you going through such things. Wishing you all the best!
July 26, 2013 at 12:40 pm
Just devastating- I nearly cried reading this and I am not a crier at all. It’s strange how you can feel so close to someone you’ve never met, yet you feel like you know them well from years of reading their blog. I’ll continue to pray for you and send positive vibes your way!
Xoxoxoxo Kelly
July 26, 2013 at 8:01 pm
I am amazed every day when I check your blog and there is a new post. To even care about blog maintenance when you’re suffering so much is incredible, it speaks well of your character and strength. Thank you. All I can do is send my best and hope and pray you come out of this soon and this horrible illness leaves you.
July 26, 2013 at 10:32 pm
You guys have me all misty eyed! My nervous system is indeed trying to destroy me…but I simply cannot let it. Thank you for your kindness and love. That kind of energy gives me strength to keep fighting.
July 27, 2013 at 1:58 am
…A Friend recommended your blog
[…]you make blogging glance[…]
July 27, 2013 at 3:40 am
I hope you are feeling better today!
July 27, 2013 at 1:37 pm
Oh, Dana! My heart goes out to you! You truly had me in tears by the end of this post… And then I scrolled down to “cat sushi” and bursted into laughter. Your blog is bookmarked on my browser always. Keep fighting. We’ll all be here for you.
July 27, 2013 at 9:57 pm
You are a fighter Dana, never give up! You are in our thoughts every day! Love you much 🙂
July 29, 2013 at 4:05 am
How many times have I called you Pollyanna? Don’t you believe me now?! Look at this outpouring of pure Love and Hope! Everyone is clapping for Tinkerbell to live! And she shall. Tink recovered from the poison and Pollyanna was told she’d be able to walk again. Just have faith that your story will have a happy ending too. Keep up the optimism. Even through this horror. We are all sending you that pink healing light….so let it in.
I love you dearly my little one.
July 29, 2013 at 10:14 am
Amazed and astonished at your tenacity in such a devastating position. I suffer myself from fibromyalgia which is bad enough, but your condition sounds like hell on earth. My very best wishes to you and hope for a medical breakthrough. Love Anne
August 25, 2013 at 4:59 am
You are a strong, brave, and unique woman. I hope you you find a treatment for this syndrome and recover soon. Thanks for keeping up with your blog and sharing your story.
August 25, 2013 at 3:49 pm
Thank you so much!
September 26, 2013 at 8:21 am
It’s going to be finish of mine day, however before finish I am reading this
enormous article to increase my know-how.
October 13, 2013 at 2:40 pm
You are a great writer! Here’s wishing you the best of luck and health in body, mind and spirit~
November 5, 2013 at 11:04 am
I am following your words from here, Spain. You can count with all my respect and my support. Que Dios te guarde. Buena suerte preciosa.
November 13, 2013 at 10:48 pm
I cannot claim to know how you feel, not really. But I do know what it is like to be in so much pain that wearing clothes, moving and sleeping become insurmountable and agonizing. It is the worst thing I can imagine.
Do not give in to the frustration. You can and will overcome the pain. You have so much to give to others, but do not think of that now. Your only task at the moment is to make yourself go on, one day at a time.
Crossing my fingers for you to find any possible relief. You are in my thoughts, here across the ocean.
November 13, 2013 at 10:54 pm
Thank you so much!
November 30, 2013 at 1:42 am
OMG Dana, I Love you so and dat’s dat!!!!!!!!!!!
December 25, 2013 at 6:33 pm
Dear Dana, I just came across your blog today and I’m amazed by what you have accomplished. Then I read on and find out how, riddled with pain and suffering you are, you STILL manage to force yourself forward!! I myself have several major health problems and I understand how tiring and draining pain actually is so you are an inspiration to me already and I haven’t got past the first page!!! LOL, I am now going to have a browse through your blog and subscribe too, thank you for sharing yourself with us, sending healing, love and blessings your way, Sharon xx
January 12, 2014 at 2:37 am
I tried to leave a comment several weeks ago but can only imagine what you’ve been going through over the years. You don’t need to reply to my message, but even though you’re far away I still care about you. I hope you will soon be able to enjoy living a normal life. Wishing you the best my friend.
❤ – Elliot