all sorts of hope for this gal, Hope

This was 2009 testing for K in the hospital for special surgeries in NY.

RSD/CRPS (Reflex Sympathetic Dystrophy- Chronic Regional Pain Syndrome) is a chronic pain condition which affects the central nervous system affecting skin, joints, muscles, bones and sometimes impacting other organs. It is a disease of the sympathetic nervous system now being classified under the ‘autoimmune disorder’ category. It’s common symptoms may include various degrees of burning pain in the skin and muscles, fatigue, extreme sensitivity to touch, trouble keeping food down, constant urge to urinate, headaches, blurry vision, trouble with motor skills, dizziness.  (to name a few). RSD is considered a progressive disease. It is also considered the most painful form of chronic pain that exists today.

RSD written as Causalgia ranks highest on pain scale

Anyone can develop RSD/CRPS it starts from what they call a noxious event ( relatively minor-or could be major), damage to a nerve or soft tissue that for some reason doesn’t follow the normal healing path. Those reasons are still being researched. Speculations include genetics, immune deficiencies, and vitamin deficiencies.

This is my RSD story.

I suppose my RSD story begins much like everyone else’s. “It was a lovely fall day…” , a Saturday, September 29, 2000 . We had recently moved into our new split level. We had just bought our business, and I had only been working in Human Resources for The Reading Hospital and Medical Center for a little over a year , working approx 45-50 hrs a week and teaching Sunday School. (the hospital was my dream job, by the way!). Nick was 4 and Natalia 2. I like to think that I was the modern day Super Woman.

I had the children out to visit my parents and they had fallen asleep in the car. Trying not to wake them up, I carried them each in separately. Nick first, layed him on the sofa, he woke up. “Shh!” I said. “I am going back out for your sister!” Once I got Natalia in the house, Nick began to cry, so I hurried down the steps ( my first mistake). Talia woke up and I rushed- missed but one step and tumbled! I tried to break her fall – “down went Frazier!” I caught her but missed me. “Get me something cold!” I yelled to 4 yr old Nick. He ran to the fridge and brought me a beer!! ( always the comedian!) . I instructed him to get me the phone as I knew there was no way I could stand up. Now I had a crying 2 yr old, a crying 4 yr old and a crying me!

By the time I was x-rayed my foot had doubled in size. I had never broken a bone but I knew this wasn’t good. I left the ER with only an ace wrap and crutches, a diagnosis of a List- Franc fracture and instructions to find a good Ortho on Monday. ( I worked for the Hospital.. how hard could that be?)

I actually returned to work Monday, but was in extreme pain , it was a little hard to keep my foot elevated under my desk, especially while conducting interviews. Found a good Ortho. A week after my original break , I was a tad shaky one morning on the crutches ( I was Non-weight bearing) and I fell down another 5 steps clear-even managed to take out a door! They finally put me in a Bledsoe boot but was still non- weight bearing. I was unable to be cast due to the extreme swelling in my foot, thus the removable cast. I stayed in that darn cast for 6 months. As holidays came and went my co-workers joked about decorating my boot to match each holiday. Pumpkins and skeletons for Halloween, lights at Christmas.. well, you get the picture.

I was sort of “one of the lucky RSD ones” as immediately when my cast came off my Ortho casually said to me… “ You have RSD”.. I said, OK, well, we fix that, I’m good to go, right? He said it so casually, like, “you have a hang nail”. I remember going back to my office and telling my partners in HR and our workers comp gal, Cindy, started shaking her head. OH NO HOPEY… we pulled it up on the net, but back then there wasn’t much to read. (this was 12 years ago, mind you).They let me go home right away, I was a mess for days. To me, it was a death sentence. But my husband, ever the optimist, swore we would get RSD and it would not get us.

I went to about 5 different docs trying to get someone to tell me I DIDN’T have RSD.
I went to PT for 6 months. After that , I found out my foot still wasn’t fused. For whatever reason, my bones just wouldn’t heal. Got a referral to Hershey Medical Center and, met an amazing Orthopedic Surgeon- Dr Julianno. He “put humpty dumpty back together again” He did a TMT fusion and fused my foot then sent me back to PT. I treated at Hershey for about a year, had another round of blocks, meds, PT/OT, you name it.

But my story doesn’t end there. SORRY. – about 5 years later, I was out around Memorial Day and noticed EXTREME sensitivity, and a sudden bulge around my scars.
An MRI and Cat Scan later, it was discovered that my pins had “backed out”! Who knew? Apparently this can happen in like one in one gazillion people. So back to Hershey we go ( on my birthday) for a re-fusion, which further aggravated my RSD.

My RSD has continued to spread to this day. There are times when I can’t stand certain clothes.(um, like a bra!! LOL) I cannot tolerate wind, cold. Dental work is a nightmare. Loud noises and vibrations are horrific. Sometimes even eating is not pleasant! (how sad is that!!) RSD disrupts my sleep so sometimes I sleep for about 2-3 hours a night. There hasn’t been a day in almost 12 years that I don’t know pain. Certain parts of my body will swell without warning or change temperature from other parts.  My feet(hands, fingers, etc) can be severely warmer or colder than each other or any other body parts. My body has trouble regulating my breathing, my heart rate. My vision has become compromised. (and as a hopeful photographer, this has become very hard for me to accept).

I originally managed my RSD by trying to eat right ( I try to follow the RSD Diet from http://www.artzoo.com,) trying to exercise when I could. I quit smoking. I stayed as active as possible. I took a host of meds ( much to my dismay). I’ve done massage therapy and Chiropractic Care. I’d gone Holistic for a while, but always gave up. I have a TENS Unit, and I swim when I can. And my best therapy- my family/friends.

In 2009 I was blessed with an opportunity (after a 2 year wait time) to meet with the “world’s leading specialist” in my disease, Dr Robert Schwartzman. He confirmed my diagnosis of then full body / internal RSD.  I began some rigorous testing for an experimental/ controversial treatment – IV Ketamine therapy. I passed all the testing confirming that I was both ‘bad enough” to need the treatment and strong enough to withstand the grueling side effects that it could impart.  Every time a test would come back as being passed,  I would have champagne glasses filled with gingerale waiting for my family when they arrived home. Ketamine was going to be my chance at a new life.  I prayed I would no longer need to hide at home, or use my forearm crutches/ wheel chair daily. Ketamine was supposed to reduce my pain levels enough so that I could tolerate the other “issues” that my disease causes.

I celebrate April 16th 2010 as my “KAnniversary” . It is the day that I got a chance to live life a little bit more pain free again.

I began my first 10 day inpatient IV Ketamine infusion. I have since had 2 inpatient coma therapies and countless outpatient treatments. They have sustained my quality of life for now. RSD has been both a blessing and curse. I have learned some pretty amazing things about myself and my family. I never knew that I could be this strong and I never knew that they could be, either!

Through this all, though, I have been blessed with the most amazing support system. My parents and siblings have been some of my strongest advocates and supporters. My extended family has always “been there” to lend a hand when I need one. I have children who all but completely understand, who know what a “bad day” is, and who have learned to see people for who they are and not what they are, who now know compassion and empathy. I have been blessed with friends who don’t judge, and for that I am grateful. I have been blessed with a husband who is not above laundry and vacuuming or dishes. And I have found an online network of support (my facebook pals!) like no other I have ever known, and for that, I am eternally grateful.

 (this page also exists as a blog entry.. no one seemed to be able to find it as a Page –  :{ )

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3 thoughts on “all sorts of hope for this gal, Hope

  1. Hi Natalia, nice name, an interesting blog to read and walk through his lyrics. I love that you visit my blog, I’m from a distant, but still we are united by art and the way of looking at things in life. Sorry for my basic English.
    Cruz

    • WELCOME~! your basic English is better than my basic nothing :D I must correct you , though, sorry. I am HOPE, Natalia is my beautiful daughter. Thank you for your kind words. Your blog is filled with incredible images! Can’t wait to see more.

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