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Raising Awareness, Building Community by Stephanie Christianson

Raising Awareness, Building Community
Stephanie Christianson

The Juvenile Diabetes Research Foundation (JDRF) hosted a series of two 5k challenges here in Atlanta, Georgia. My family and I participated in last year’s 5K held on the 19th at Verizon Amphitheater in …

 

Sheila Kim Purcell #ShareYourStory #MS
Sheila Kim Purcell
August 20,1999 was one of the most life altering days of my life. The first was the day I found out, I was going to have a baby. This day was not so joyous as it was the day I found out I had MS. I was a single parent with a daughter in high school, what was I to do, how was I going to tell her?

I had been going to the doctor for months complaining of headaches and numbness in my arms and legs. The doctor kept insisting it was stress, he gave me medication for the headache and told me to rest more. Then came the pain, the best way I can describe it, is it felt like every muscle in my body just ached, almost like having the flu. The doctor again dismissed what I was telling him. When the fatigue sent in, I felt it was time to find a new doctor. I explained all of my symptoms to the new doctor, from the headache, muscle aches, fatigue my inability to concentrate. He ran multiple test and they all came up negative.

He then said he wanted to send me for an MRI and spinal tap, 5 days later he called me and asked if I could come to his office that day. I knew that was not a good sign. He walked in and said the words I will never forget, “Sheila I am sorry to have to tell you this, but you have Multiple Sclerosis”.

I thought my life was over. Over the next several years, I was on multiple medications, in which the side effects were horrible. I almost missed my daughter’s HS graduation due to the pain and fatigue. I cannot do everything I was once able to do by any means as I let MS define me for many years. I have changed my diet, due to balance issue, I have installed grabbed bars in my shower. I try to avoid stress at all cost. I am now a Pain patient Advocate. I tell every person I met with MS you can let MS define you or you can define MS, I chose the latter! As I am writing this I am in a flare, so as you can see MS does not have to control you

Learn more about MS here

 

Dr.Webster_HealthCareHero (1)Where Do You Tilt Your Lance?
by Guest Blogger; Lynn Webster, M.D.

 

 

One sunny noonday in the spring of 1990 I received a call from Salt Lake City primary care physician King Udall.  This is the city where I had been practicing medicine since completing my residency in 1980. Dr. Udall was known for treating patients without insurance, many of them destitute. It was one of these patients he was calling me about now, a woman who desperately needed his help and mine.

“Lynn, I have a sixty-two-year-old lady with acute herpes zoster (shingles) involving her left shoulder, axilla, neck, and face. The lesions are weeping, with serous sanguineous fluid, and she is screaming with pain. She can’t tolerate any clothes on the areas and is pleading for mercy. I’ve tried narcotics and they don’t touch the pain. Can you help?”

I said, “Have her come be admitted to the hospital, and I will see what I can do.”

Later that day, at Holy Cross, I met Placida Ramirez*, as well as her husband and two grown daughters, who obviously were quite concerned about her suffering. In her sixties, Placida was heavyset, with light-brown skin and long black hair. She appeared rugged, but she was obviously in severe pain. She was restless, frowning. She paused between words because, as she described it in her broken English, the pain was like an electric shock radiating through her body.

When I began my exam, I quickly discovered that Placida had more problems than shingles. She also had a flesh-eating cancer that had eroded her breast and was invading the left armpit. This was a death sentence already well on its way to being served. I glanced at Placida. She was avoiding my eyes.

I could picture what must have happened. Like many people who come down with symptoms they know or suspect to be life threatening, Placida, instead of getting help immediately, tried to make the symptoms go away by ignoring them. Her lack of health insurance further discouraged her from seeing a doctor…until the pain exceeded her ability to deny it and she went to see Dr. Udall. If cancer was killing her, fear and poverty had joined hands to hurry it along.

I had seen similar types of pathology in the operating room prior to a palliative mastectomy. In those instances I was always able to relieve the pain with a general anesthetic. Not this time. I immediately knew Placida was not a typical patient with an acute pain problem but a patient needing end-of-life pain relief.

I placed an epidural in her upper spine where the medication could block pain originating from the nerves in the armpit, shoulder, neck, and breast. The medication was a local anesthetic like Novocain and small amounts of fentanyl (narcotic). Within a few minutes of my starting Placida’s infusion, she was essentially pain free.

The dying woman rested once the pain was better. Her husband and daughters began to smile and thank me, relieved that their beloved wife and mother was feeling better. Due to the language barrier and some cultural difference, it was not easy for us to communicate, but it was obvious by mannerism and unspoken communication that the family was appreciative. But I noticed that Placida herself didn’t have much to say. She was naturally still weak, but more than that, she seemed to have gone into herself and become more depressed. I think that now that the pain was better, her mind must have begun dwelling on the more serious problem of her cancer. She could no longer ignore the inevitable. She was facing the end.

Placida received the medication for the next three days. It kept the pain away sufficiently so that she could eat and sponge-bathe. For a while, she was able to feel more normal.

I wanted to send her home with the epidural to continue to give her pain relief, but I could not find anyone to provide the service. Since she didn’t have insurance, and since Medicaid wouldn’t pay for home infusion of this type, she was going to be forced to leave the hospital without the epidural. In a short time, she would be plunged back into the same pain she’d had when I’d first met her—a pain that, Dr. Udall had said, no narcotic would touch. Sick inside, I removed the epidural on the third day. She was discharged, to be followed up by Dr. Udall and the oncologist.

A few weeks later she died.

I was afraid to ask if she had died in pain, because I was sure I knew the answer.

Although death is inevitable it should never be insufferable. Unfortunately I have seen far too many people struggle at the end of life and throughout their life to access the type of care that everyone should be able to receive. I have always believed that pain relief should be a right and not only available to those who can afford it. For this to become a reality, people of all interest must unite to demand this level of humanity.  Here is where I title my lance.

*The patient’s name was changed to protect her identity.

Lynn Webster, M.D. is the Vice President of Scientific Affairs of PRA Health Sciences and an industry leader in helping physicians safely treat pain patients, and develop safer and more effective therapies for chronic pain. His latest book, The Painful Truth, will be published in September 2015. You can follow him on Twitter and Facebook.

 
#ShareYourStory: Mike Karnyski Hi my name is Mike and this is my story.I was injured in an Industrial Accident in 1994 having my right hand crushed by over 1500 pounds of steal.I had 4 operations and 2 amputations all within a year.My first amputation was half of my index finger than a short time later the rest of my finger and a quarter of my hand.I then developed RSD?CRPS in my hand and arm a lot of therapy and meds plus Ganglion Nerve Blocks.Then the RSD?CRPS spread to my shoulders and back more Therapy and Lower Lumbar Injections.Then it spread to both my legs and feet you guessed it more Therapy,Medications had to walk with 2 canes and use a wheelchair to get around plus water therapy.Then PM said we would try a Spinal Cord Stimulator went through the trial and then had the SCS implanted.This really gave me a new lease on life,I do not walk with the canes or use the wheelchair and the best part NO MORE MEDICATIONS.It is 12 years with the SCS. Now I am mentoring individuals that are having a hard time dealing with the pain from RSD/CRPS it is something I enjoy doing.I now take one day at a time and Thank the Lord for every new day. Mike Karnyski
 
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