My Lupus Journey - Donald "Hap" Loeffelholz
I am a 60 year old male of German descent who has lived with lupus for ten years. I began experiencing pain in my hands and feet which sometimes became unbearable but was difficult to explain. The bottom of both feet would absolutely ache and nothing gave me relief. Eventually I sought a doctorís advice, but unfortunately, I did not receive follow-up for sometime.
This cycle of events lasted for two years until I met with a specialist who confirmed I had lupus. I was given a brief explanation of the disease, some literature, my first couple of prescriptions and sent home. My wife was adamant about finding some sort of support group as we had no idea what this disease was. Oddly, even with all the people I have met through Saskatchewan organizations, I had yet to meet other males with lupus.
I remain at my job, active and mentally alert, but as the years pass, my muscles, joints and headaches worsen. There are days that I hurt so bad I could cry and other days when the pain is quite tolerable. My headache is constant, varying day to day only in severity. I have an eye test performed each year, routine blood work to monitor my condition and a yearly specialist appointment.
I am not as active as I once was, although I continue to do both carpentry work and vehicle body repair. I am aware of the stress I put on my body and know that I must sometimes slow down and rest. However, I try to keep active. If I did not, my muscles and joints seize up. Fortunately, I am self-employed which I believe assists with management of my disease. I do not know if I would be able to work at a job where I was unable to stop as and when I need.
With more intense, longer lasting flare-ups I take another type of medication. Sometimes I have side effects from the medications I am taking. I have had numerous stomach issues. To no avail, I have tried a few elimination diets to ensure that it is not a food source. I do dislike that the prednisone makes me want to climb into the fridge and live in there because it makes me extremely hungry. During the last few years, I have also been diagnosed with diabetes which I control with medication.
On occasion, I will have an alcoholic drink but after I do, I usually feel it in my muscles. MSG is horrible. I am very uncomfortable when I consume it. Eating out is not a good thing either. Restaurant food seems to make me either ache or have an upset stomach.
Luckily my wife is with me and understands my good and bad days. However, I have had to teach my family and friends what this disease is all about. It is hard to explain something when it isnít visible. If it isnít obvious to the naked eye it is difficult for people to relate. Therefore, I would encourage doctors to throw out a life line of support groups, organizations and literature to new patients and not to send them away with no resources.
Overall, I feel that I am in a better position than other patients I have met and I am grateful that the disease has progressed fairly slowly. My wish is to be without lupus for a day so I could go snowmobiling in the winter or quading in the summer. These activities have become just too painful. As for my wish related to lupus, I would like to see more research and a halt to the fast progression experienced by so many patients. I hope my story is helpful to those affected by lupus and that in the near future Canadians will become more aware of this disease.
For more information about men with lupus please view the following websites: