RSD Interview ##11 - With Christine Hughes Hoggard

HOW AND WHEN DID YOU GET RSD?

 It is hard to say exactly when I got RSD but it started from a double-herniated disc at C4/C5 with entrapment of the C5 nerve root. I started seeing pain management in Jan. 2006 after my initial MRI showed the disc issues. I’m not sure exactly at what point my pain changed from just disc pain to RSD pain but I remember at some point in April/May 2006 there was a significant change in the frequency and intensity of my pain. During this time I was seeing a multitude of doctors—orthopedists, neurosurgeons, neurologists, etc. and undergoing numerous treatments—epidural injections, physical therapy, massage therapy, etc. In Oct 2006 I saw a neurosurgeon who suggested surgery. I already had an appointment scheduled on Nov. 20, 2006 to see a neurologist. Wanting another opinion, I kept the appointment. It was then that I was diagnosed with RSD. Not wanting to believe the neurologist’s diagnosis, I went through with surgery on Nov. 27, 2006 and had a cervical discectomy with fusion. While it did help some symptoms, it did not relieve my pain. Six weeks post-op my pain management doctor confirmed my neurologist’s diagnosis of RSD. (Ironically, within a short period of time I was also diagnosed with Sjogrens Syndrome, Fibromyalgia, CFS, and Palindromic Rheumatism.)

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?

 The most significant way is no longer being able to work and being on full disability. At the time I was diagnosed I had just turned 39. I continued to work initially. (I was a charge nurse on a busy in-patient oncology unit.) The RSD was in my right upper arm/shoulder and neck. I was able to continue working until March 2008 when my Spinal Cord Stimulator stopped helping my pain and my RSD started spreading to my entire upper body and internal organs—stomach (gastroparesis) and heart (tachycardia and SVT). I found myself 40 and disabled! I also used to be much more active. I played co-ed softball and church league volleyball. I also sang in the church choir and was very involved in church ministry. (My husband is the Minister of Music at our church.) Prior to RSD, I took care of most of the household duties, something I suddenly found myself unable to do.

DO YOU HAVE A GOOD SUPPORT SYSTEM?

 ABSOLUTELY! My husband has been amazing. We have always had a very close marriage but I have seen a new side of my husband that I cherish and adore. I have come to know a very caring, tender side of him that I had not seen before. He is so committed to me and our marriage and I really took that for granted before I became sick. He has had to pick up the slack for all the things I can no longer do and he has done so without complaining. He is my rock and my encourager. I have two adult sons (teenagers at the time of my diagnosis). They are now 23 and 22 (on Jan 2^nd ). They are very compassionate, caring young men. My oldest is out on his own now. My youngest is still at home and helps quite a bit. My in-laws and parents are both in town and are supportive, as well. I also have a very loving, supportive church family that visits and brings meals occasionally or sends cards when I am not able to make it to church regularly.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?

 Very much so. I rely a lot on prayer to make it through difficult times/days. I often listen to Contemporary Christian and/or Worship Music when the pain is real bad. Music really moves me. I miss singing in the choir but, with the RSD in my chest wall, it is difficult to sing. And the Sjogrens Syndrome has affected my vocal cords. But I still draw a lot of enjoyment from music. Sometimes my husband will play the guitar and sing and that helps relax me, too.

HOW HAVE YOU RE-INVENTED YOURSELF?

 That is a work in progress. LOL!

HAS ANYTHING GOOD COME FROM THIS TRIAL?

 I have learned a new depth of faith…of leaning on God. I have experienced a new depth of love for my husband. I have come to appreciate the small things in life. I have learned what is important and what is not. Health is so important, material things are not.

WHAT THINGS DO YOU MISS THE MOST?

By far, I miss Nursing the most. I loved my career so much. I would love to be able to go back to working with cancer patients again. I felt like it was more than just a job. It was a calling in life…my ministry to others. I miss sleeping in bed next to my husband. I am not able to sleep lying down so I sleep in a recliner for now. We are working on finding a solution for that. I miss being intimate with my husband on a regular basis. And I miss being active.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?

Even though most of the time I look “ok”, usually I am in a great deal of pain. Don’t touch me without asking me first. A hug, pat on the back or simple handshake can put me in bed for days or sometimes weeks!!! I’m still me! I have a disease but I’m still basically the same person I was before I got sick. Don’t act weird around me. Talk to me the same as you did before I got RSD. Don’t just talk about my illness. I get tired of it.