From Debbie Lynch, CEO
One of the issues we have struggled with for the last 10 years is how to facilitate providing support, other than financial assistance, for those with lupus and their families.
In the early part of the decade we organized support groups, 18 to be exact, in various parts of the state. A written manual and training were available for group leaders as was a quarterly stipend for meeting expenses.
About 9 months into the first year, imagine our surprise when we were ready for the quarterly conference call and no one called in! Follow up phone calls found that for various reasons groups were not meeting, had disbanded altogether or had decided to call each other as needed.
The reasons for not meeting included lack of time, feeling better and wanting to move on, group meeting location and/or time was not convenient, and group dynamics were not good. For some groups the issues were more complex and in the age of the Internet and Facebook there are many ways for individuals to connect.
Regardless the groups were not working. All this took place when our staffing included a full-time program coordinator who also had lupus. Subsequent efforts to start and maintain traditional support groups met with similar fates, the exceptions being groups in Highlands Ranch and Arvada that were functioning prior to our involvement and continue to function today.
At this time, we have a successful statewide telephone support network that includes a diverse group of clients committed to helping via telephone as needed. I am writing this note to all of our subscribers for several reasons: we continue to get requests for groups, we have an opportunity to partner with a new and seemly successful support network developed in Florida and we need your help! You will receive a short survey via e-mail asking for your input as we seek additional ways to provide for the support needs of clients. Your thoughtful feedback will be sincerely appreciated.
The event, scheduled for May 3 at The Soiled Dove Underground is designed to raise awareness and money for lupus. Two of Denver’s most sought-after acts, the Hazel Miller Band and Ron Ivory’s One on One, will provide the evening of high-class entertainment.
Not only is Lupus Colorado appreciative of the talented people who are supporting this event, but also of the businesses who have come on board to sponsor the event. This includes title sponsor Xcel Energy, Jammin’ 101.5 radio, The Denver Urban Spectrum newspaper, and The Soiled Dove.
“It’s an opportunity for those who suffer from lupus to know that others are here to support them,” said Lupus Colorado CEO Debbie Lynch. “Then you thrown in the tremendous talent we have for this event…we can’t wait!”
Tickets can be purchased at www.blacktie-colorado.com, Event Code Lupis53, for $30 each. The fun starts at 7:30 p.m. on May 3 at The Soiled Dove Underground, 7401 E 1st Ave., in Denver.
Dear Gentle Readers,
I haven’t written for a while because two very difficult situations have impacted my life and I didn’t know how to write about them. Now that some time has passed and I am a bit distanced from the circumstances, I can look at them with a view toward understanding about how I can manage my life given these new twists.
A few months ago, I had another spinal fusion. This one was at a higher level than the last one. My surgeon had tried to fix my problem the year before with a laminectomy, but that didn’t work. After a few days in the hospital, I spent a month in a rehab center learning to walk again and do all those things that I used to do before my back became such a problem. The surgery was a success, but the recovery is taking a very long time.
While I was in rehab, my husband developed pneumonia and was admitted to the hospital. This was an impossible time for all of us. My daughter took the brunt of it, running back and forth between the hospital and the rehab center. My sons helped out as much as they could, but they don’t live here.
I was an emotional mess because I was worried about my husband and was still feeling a lot of pain from the surgery.
Then the unbelievable happened! They drained fluid from his pleural cavity and found cancer cells in the fluid. Oh no, he’s got cancer. My daughter and my husband came to the rehab center to tell me. I fell apart. Strong me. Able to handle anything. But not this. We all sat there and cried. Our world had just crashed.
OK. We have the news. What do we do next? We needed so much inform. What kind of cancer does he have? How is it treated? What is the prognosis? Not knowing was killing us. We went to see an oncologist who took lots of blood tests and sent my husband for many kinds of examinations. Then we went to another oncologist who took more tests and finally a biopsy. Now at least we had some answers. In some ways this was comforting. We can deal with the situation now that we have information.
Here is the twist. My husband has always been my caregiver. As you are only too well aware, having lupus requires a lot of medical care as well as doctor’s visits and many days of feeling awful. He is always by my side helping me out. Now, I have become his caregiver. This is a difficult situation. I don’t know how to be a caregiver. I tend to hover – Eat! Rest! Don’t lift that! I’ve become a real pain in his side. As for me, he still tries to be my caregiver when I should be doing things for myself.
So here’s what we did. I took a short trip and left him alone. He fared quite well. Of course my daughter looked after him and friends took him to lunch, but he was on his own most of the time. Then he took a trip and left me alone. I fared quite well too. I had friends who took me out but mostly I was on my own. This is how we proved to ourselves that we could do it if we had to.
There are still days when he needs me and I need him. I try not to hover. He tries to let me do things for myself. We need each other more than ever. But we also need to give each other the space to continue to live our lives as best we can given these new circumstances.
Until next time . . .
©2013 Anita Fricklas All rights reserved.
By Sandra Kanowitz, MSN
Little did I know when I was young, in love, and about to be married, that the genetic blend my husband and I would create could turn out to be disastrous for our offspring. We were young and healthy and so were our families. We didn’t think about what might be lurking in the shadows of our futures. There were no genetic defects to warrant genetic counseling, and the road ahead seemed nothing short of rosy.
About the time I finished my masters degree in nursing, my husband started medical school at UCHSC. I worked full time as a nurse practitioner in a busy family practice, while he spent most of his days and nights attending the ill and injured.
The week I started my new job in family practice (1980), I found out I was pregnant. I was elated and excited, yet reservedly fearful of what life would be like working full time with a new baby and a husband in medical school. We barely survived the next two years with our colicky, ADHD son, and then our daughter joined our family. Both of my pregnancies were fraught with complications, but our children were healthy, and that was what counted. Life with two children, a stressful job, and a chronically exhausted and sleep-deprived husband was getting the most of me. I was stretched beyond my limits. At times I could hardly carry a laundry basket up the stairs. I cried right along with the kids, and always attributed my exhaustion to our stressful life style.
It wasn’t until my joints started hurting and swelling that I wondered if something was wrong with me. Suspicious of an autoimmune disease, I checked my sed rate, ANA, and RA factor, all of which came back normal. My EBV titers showed past mono infection, but no chronic viral activity. All in my head, I supposed. My motto became “when the going gets tough, the tough get going,” and I trudged ahead, feeling on the verge of physical and emotional collapse much of the time.
Over the next six years, I checked my ANA, thyroid profile, blood count, and blood chemistries numerous times, searching for some explanation for the extreme fatigue, joint pains, and aching weariness. I managed to get through my demanding day at work, but then fell apart at home. I couldn’t cope with feeling ill, caring for two energetic young children, the house, the yard, etc., etc.
When Art finally finished his residency in 1990, we moved to San Diego for his first “real” job as a physician. I couldn’t even think about looking for a job. Our move seemed like the last straw for me, and I wondered just how long it would take for me to get back on my feet. I felt weak, for not being able to handle life’s demands, and felt guilty about not working. More blood tests, repeats of the same old stuff, and finally something showed up. My thyroid was under active! I was excited and thankful! Hypothyroidism was easy to treat, and I looked forward to feeling like my old self again. Visions of renewed energy and productivity danced in my head. I couldn’t wait to get started on thyroid medication, and didn’t mind a lifetime of treatment if it helped me function again.
After three months of treatment and lab confirmation that my thyroid dose was adequate, I realized that although I did feel better, this medicine was no panacea. My joints still hurt and I continued to feel ill in a vague, foggy sort of way. Any stress completely flattened me for days, and I began to question my sanity. Our couch became my best friend. When I heard my husband coming home, I would jump up and try to look busy, act normal, and have a smile and a kiss to greet him. Did he ever wonder that I was putting on a performance? I felt dishonest and sneaky, but I didn’t want him to come home to illness after dealing with sick patients all day. I wanted to be the healthy, energetic, optimistic young lady with whom he had fallen in love years ago.
As it turned out, we moved back to Colorado nine months later, in the spring of 1991. After two moves within one year, I knew I needed to rest and recuperate before I could even think of returning to work. Then my brain started to malfunction. I was forgetful, inattentive, made appointments and didn’t show up, forgot to pick up my kids from after school activities, couldn’t do mental math, couldn’t recall familiar words, would forget what I was talking about in the middle of a sentence, couldn’t even carry on a reasonable conversation. My embarrassment kept me home. How could I work as a nurse practitioner? How could I risk even going to a party and sounding like an idiot? Did I have Alzheimer’s at the age of 42? I checked my ANA again to no avail. It felt like a door slammed right in my face; no answers, just more questions.
Over the course of the next three years, my condition worsened. Pleurisy and nasal ulcers plagued me constantly, and I kept telling my husband I thought I had an autoimmune disease. But why were my test results always negative/normal? I knew I couldn’t be imagining this but what would any Doctor think with completely normal blood test results? Another neurotic female?
I burst into tears when my husband told me. I had sent my blood to a reputable immunology lab in California in a desperate attempt to get answers. It was 1994, now ten years after this illness started. Like most days, I had lost my glasses somewhere in the house, so when I opened the envelope and couldn’t read the small print, I had handed the results to him.
“Your ANA is positive” he said calmly, in that reassuring way physicians tell their patients bad news. I had to see the paper. A flood of new fears quickly replaced my initial reaction of relief. Now I had an answer, now perhaps someone would believe me and treat this. Could I get better? What did the future hold for all of us?
My ultimate fear is for our children. In the interim, my husband’s mother was diagnosed with Sjogren’s and systemic lupus and my father with Behcet’s disease (also autoimmune with many similarities to lupus). What a genetic legacy for our children to inherit! And what exactly is my point in telling you all this?
Clinical studies abound searching for the genetic basis of lupus and other autoimmune disorders. All that is required to participate in most studies is a blood sample and perhaps a swab from the inside of the cheek. From these specimens, DNA samples can be obtained, stored, cross referenced, and multiplied, making your blood sample available to many researchers, for many years. Some studies ask that family members provide a blood sample or cheek lining swab as well. Families that have two or more persons with lupus are particularly needed.
To find out about clinical studies that are recruiting participants, check www.lupus.org or www.lupuscolorado.org and look for research. You may also call the patient recruitment line of the National Institute of Health (NIH) at 1-800-411-1222 or check the NIH website at www.nih.gov/clinicaltrials and specify lupus. You can be listed on the national registry as a potential participant, and research teams can contact you to see if you qualify for a clinical study.
Additional studies are being conducted at the University of CA, San Francisco 1-888-223-3067; University of MN 1-888-226-8636; and Oklahoma Medical Research Foundation 1-888-655-8787. Blood and swab sample kits are mailed to you by the researcher, return postage and lab fees paid by the research team.
Continued studies are needed to find a cause and potential preventive measures, treatments, or cure for lupus. Your participation may help to rid future generations of this serious affliction. Please, get involved and leave a positive legacy for our future generations! The life you save may even be that of your child or grandchild.
Reprints by permission from the author only.
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