CHANGE

   PAIN is rough today. I'm a bit scared about this new problem. In '98 the Dr.'s found some degenerative discs
and a small syrinx in my C-5 through C-7 spine area. I had surgery to correct the disc issues but the syrinx was small and they left it along. Several years ago, exrays showed that all of the screws and plate work were now loose, just jingling around in there, not supporting anything.
  Most of the time I have had no problems with it. I'm just limited on my range of motion in my neck. But on a recent vacation, I suddenly turned my head to see my grandson, and terrible pain was instant. It hurt through my neck and down my shoulder into my right arm. I assumed that I'd be sore for a while, but I was sure it was a temporary thing.
  It may still be a temporary thing. But since then, the pain has increased, my right arm feels heavy,awkward, and somewhat numb. I'm having trouble using my right hand with simple tasks like holding a fork and feeding myself, or brushing my hair. Even typing is a struggle, as I continuously have to correct myself. I've never been ambidextrous, but it feels as it would if I were trying to do everything with my non-dominant hand. I'm still hoping I have just irritated some nerves and things will be back to normal in a few days.


  Those of us with chronic pain disorders and disability must learn to accept CHANGE as a fact of life. It is not easy by any stretch of the imagination. Most of us have lived a busy productive life at some point. Then things become more of a challenge as our first symptoms arise. Or for some folks it is a sudden tragic injury or accident that hits us out of nowhere. Whatever the case, we must begin to learn to accept our limitations and if possible, find new ways of doing everyday things. For many of us, it means accepting that we'll never again be able to have fulfilling careers, or be the athlete we once were. 
  We soon begin to feel isolated, useless, and misunderstood. We no longer participate in the social life we once had. Instead, our weeks are often filled with doctor's visits, home nursing care, physical therapy (that rarely helps), and test after test.
  Just when we feel we've got a grip on this new reality, something changes. Complications arise, new diagnosis are found, we must learn to use a walker or wheelchair, or learn we now must rely on daily oxygen therapy or require a urinary catheter. Even trying new medications can cause us to feel more like a lab rat!
  For me personally, change has been ongoing most of my life. I was born with Spina Bifida which caused minimal limitations in my childhood. By the time I was in my mid-30's I'd undergone some 30 operations. In 1993 I developed a severe infection in my left ankle joint (osteomyelitis) that required the amputation of my left leg below the knee. In 1998 I was diagnosed with Syringomyelia and tethered cord. In 1999 I underwent my first surgery to correct those issues, but developed a very life-threatening infection in the surgical site while still in hospital. This required a 6 month stay in a rehabilitation facility. Later in '99 I was hospitalized again for a severe urinary tract infection and a routine chest exray revealed 7 masses spread throughout both lungs. I underwent lung surgery to remove the lower lobe of my left lung, but thankfully a biopsy revealed no sign of cancer. In more recent years I have had several more operations bringing my total to near 45. I now require a urinary catheter at all times and oxygen therapy at night, and occasionally through the day. I'm now confined to a wheelchair, but I'm fortunate to have a nice power chair and I get around much easier.
  Since being diagnosed with Syringomyelia, I've been made aware of all the possibilities for my future. None of them are good. And in spite of all the CHANGE I have accepted in my life, I'm not ready to loose use of my arms or hands! As I said, I am optimistic that this current flare-up is only temporary. But as with all persons with disabilities know, anything new can be quite frightening.
  However, one thing I have learned about myself through the years is that I WILL SURVIVE. I would in time accept the new change and find ways to work around it. Our attitude in living with disabilities is KEY. It is easy to allow the disability to "ground" us, to just throw our hands up and give up. The harder thing to do is NOT allow our mind and attitude to also become disabled. Sure, we're all entitled to days when we feel less like fighting. But we must not allow our limitations to rob us of a well-lived life!
  One of MY ways of dealing with that is to share my story with others facing the same challenges. Reaching out to others is very empowering. It shows us that we are not alone, and we DO have plenty to offer this world. Each story is unique, each person's lessons learned along the way are unique and valuable.
  If you're reading this, it is my prayer that you may find encouragement here. That YOU will feel empowered to share your story and your lessons learned along the way with others. If we use our pain and struggles to help another, then we have not suffered in vain.


Denice G. Whitaker, 2010