I was recently asked for a copy of this article, only to discover that the link to the original was dead. It was one of my mom's "greatest hits" as far as sharing her experience as a public health officer and nurse. Many people reached out to her after she shared her experience. Here it is the complete text. May the words of my deceased mother continue to promote public health and the importance of immunizations long after her death.
Keep your health: Avoid needless pain and misery. It's a cautionary tale: Learn from Holly's harrowing experience: Get vaccinated.
Although she ends this piece by imploring parents to get their kids vaccinated against chicken pox, I would also advocate for older adults (who had chicken pox) getting vaccinated against shingles. At the time she endured her first bout of shingles, she was not old enough / elligible for the shingles vaccine. You had to be 60 years old then. Now, there's a second vaccine available [Shingrix] which can be given to 50 year olds. I got mine earlier this year.
County health officer explains her continuing,
(Editor’s note: This is an article submitted for publication [in The Antigo Daily Journal 27 January 2010] by Langlade County Health Officer Holly Matucheski.
It details her battle with shingles, a fairly common affliction, but in her case, a very serious health threat.
It provides interesting insight into how a very painful problem can become tragic.)
By Holly Matucheski Health Officer
Langlade County Health Department
I am submitting My Journey Through Shingles again due to several requests that I have received lately about the subject. There seems to be an increased incidence of Shingles cases in recent months. Singles affects different people in different ways from mild cases to very severe cases. My case was one of the more severe, falling in the 7 percent range of severe cases nationally. The one constant among all cases is the significant amount of pain that may be experienced.
As a nurse I have cared for patients who have had shingles. I listened to their complaints of severe pain, offered my concerns and sympathy, and tried to ease their pain. I now know that I had no idea what they were talking about.
Shingles is a localized infection due to the same virus that causes chickenpox. It occurs only in people who have had chickenpox and represents a reactivation of the dormant virus. Why the virus reactivates in some individuals and not in others is unknown. Shingles can appear many years after a person has had chickenpox.
My journey through shingles began on a Wednesday with a strange headache on the right side of my head, above and behind my ear. This continued through Thursday. On Friday, I left work after lunch because the headache was intensifying, making it difficult to concentrate on work. My husband who has had many migraine headaches thought that I might have a migraine. So, we treated it with the methods he used. Over the weekend, the pain continued to increase, spreading over my forehead, face, and affecting my vision. The pain continued only on the right side of my head, but had changed to a pulsating, electrifying surge from the back of my head around toward my nose, but only on the right side. The weekend was spent either in bed or in a dark room.
On Monday, I went to work, but struggled to concentrate through the pain. The vision in my right eye continued to deteriorate. My co-workers expressed their concern. I tried to make an appointment with a physician but was unsuccessful, as I went to the Walk-In Clinic mid-afternoon. Kristen Hendricks Dahms, PA, listened to my symptoms. During the examination, she found two chickenpox-like vesicles in my hairline above my forehead. She consulted with Dr. Larry Brunzlick from the ER. The probably diagnosis was “Shingles!” I immediately went into denial, stating that I did not have time to be sick with shingles, did not want shingles, and would not accept that I had shingles.
I was given an antiviral and offered a pain medication which I refused stating that I did not want a narcotic to control the pain. An appointment was made for me to see an ophthalmologist on Tuesday to assess the changed in my vision. I was not a happy camper. I did not have time for this disruption in my life! Since I work in the health department with many small children coming through the department on any given day, I was not able to return to work for fear of infecting a child with chickenpox or a pregnant woman. Because the virus can be infectious to a child who has not had chickenpox or not had the varicella vaccine, I could not take the chance of causing harm. Shingles, itself, is not contagious if managed properly. I called the office to inform them of my impending absence and made other arrangements for my responsibilities.
My visit with the ophthalmologist did not go as I had wanted. He detected seven areas in my eye that could be a problem. I was given some eye drops and told to rest and return on Thursday. I continued to refuse a prescription for a strong pain medication.
My spiral downward into the depth of unrelenting, all consuming, constant hurt began to take over my life. I cannot adequately explain how the feeling of vulnerability and despair overtook everything. I am not one to just sit and relax or rest. I am always doing several things at the same time. If I am watching television, I am also reading things from work. I hurry through my housework on the weekend so that I can spend time in my quilting room. I am always busy. All this came to an abrupt end when my main goal was to try to keep a handle on the pain that was consuming me. Life as I knew it had stopped. I could not think clearly, could barely speak; activities of daily living became too difficult to manage.
On Thursday, my sister-in-law took me to see the ophthalmologist. Upon examination, there seemed to be no additional changes in my eye.
He explained to me the process of the disease again. This time, I asked for a stronger pain medication. What I had been doing was obviously not working.
The medication seemed to take some of the edge off the sharpness of the pain, allowing me to sleep in two-hour intervals. Unfortunately, it also brought violent nightmares. Obviously, this did not help to manage things. Family and friends offered to bring good and help with anything I needed, but I could not even think of what I could need. One of my best friends brought several days of food that only needed to be warmed up by my husband. This was a great help for many reasons. I had to eat to take the medication, but I was so nauseated that the thought of food made things worse. Small prepared servings helped with that cycle.
Rosita, my sister-in-law, kept reminding me that this illness was teaching me patience and that I needed to pay attention, stop, and learn from it. One theory of the eruption of shingles is that shingles will erupt at an especially stressful time in one’s life. As I think of it, I do not feel that I was under any more stress than any other time. My job as director of the health department is usually stressful, but things were quiet the week this all started. I was also looking forward to a weekend quilt retreat, one of my favorite things to do. Obviously, I did not get to go.
As the weekend progressed, my right eye continued to swell to the point of almost closing. I had very little eyesight and the pain had deepened into a continual hurt that did not let go. On Monday, I was able to see Andrea Pennington, PA, who changed the pain medication to two non-narcotics. I was so frustrated and close to tears that I may not have been very appreciative. I wanted shingles to be gone and gone now. I had things that I needed to do and this was not acceptable.
I learned many things during this time. I always thought that shingles was a condition of the elderly. That may have been true in the past, but many have told me that their child, age five, 14 or 24, had shingles. This has become a disease of all ages.
When I was a young mother, we took our children to visit friends who had chickenpox so that they would get the disease and get it over with. Research has determined that chickenpox, or varicella, is not a harmless childhood disease. The repercussions can lead to hospitalization, and in some cases death. Anyone who has had chickenpox can get shingles at sometime in life. Although shingles is not contagious like chickenpox, it is a condition that should be avoided if at all possible.
On Tuesday, I received a call from the clinic changing the pain medication schedule and adding another medication to help with the swelling of my eye and face. This helped immensely to decrease the bumps on my face and eye. By Friday, I was feeling much better. The vision in my eye continued to be a problem with double vision and halos. The headache continued, but was now controllable. It is now day 21 of this journey. I am feeling better, but I tire easily. The bumpy rash is gone, but the skin is numb and there is a constant sensation of worms crawling under the skin along the nerve roots that begs to be scratched or stroked. I know that this can last up to six months. In some cases, the post-episode symptoms have lasted several years.
I have finally returned to work. The vision in my right eye is improving. I continue on a schedule of pain medication. This journey has been a rough one and not one I would recommend to anyone. It is extremely important that all children receive the varicella (chickenpox) vaccination at the required schedule.
Children who have never had chickenpox should get two doses of chickenpox vaccine at these ages:
First Dose: 12 – 15 months of age
Second Dose: four to six years of age (may be given earlier, of at least three months after the first dose)
People 13 years of age and older who have never had chickenpox or never received chickenpox vaccine should get two doses at least 28 days apart. Check with your medical provider or your local health department if you have any concerns or questions. The varicella vaccine is provided by your child’s physician or your local health department. The vaccine is free for children under the age of 18.
This has been and continues to be my journey through shingles. This is a journey no one should have to travel. My message is for all mothers to assure that their children are vaccinated with the varicella vaccine. This is their only protection. Remember that anyone who has had chickenpox can get shingles.
I have now been 18 months since my journey began, but there is a chapter that was not included. In January of last year while I was doing a Wellness Clinic at a local county business, I began experiencing symptoms of a stroke and scattered thoughts, numbness and tingling, left face paralysis and numbness in my left hand. These episodes were short in duration and frequent. I was taken to Langlade Hospital then transferred to Aspirus Hospital. During my week stay in the hospital, a definitive diagnosis could not be determined. The above symptoms continued and the vision in my right eye deteriorated.
Brain scans, hearts scans, among many other tests could not determine what was happening to me. Clearly, this was a medical mystery. After researching the Internet, one of the physicians decided that I had developed Herpes Zoster Associate Cerebral Angitis. This is a condition that occurs in approximately 2 percent of the 7 percent of worst cases of shingles nationwide. Because there were seven lesions along the right optic nerve, the virus was able to enter my brain through the openings along the optic nerve and set up housekeeping. This resulted in the stroke-like symptoms and vision loss that I was experiencing. This condition has not been commonly seen in the past 25 years so was not considered as a diagnosis.
Once the diagnosis was determined, I was treated with IV antivirals in the hospital for a week and then three weeks at home. This certainly turned into a very expensive and emotional journey for me and my family. It has been over one year since that event and I still have vision problems and diminished coordination in my left hand. Hopefully, my journey is coming to an end. I hope that you understand my concern in the importance of varicella vaccination and vaccinate your children.
If you would like more information, you can contact Langlade County Health Department at 715-627-6250 or the health department in your area.
Find out more:
What Everyone Should Know about Shingles Vaccine (Shingrix) (Centers for Disease Control and Prevention
What Everyone Should Know about Zostavax (Centers for Disease Control and Prevention)
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