Lupus: Support and Survival
My Lupus StoryI train dogs. I train them for tracking, search and rescue, as well as obedience and mobility assistance. I have big, strong, shepherd dogs so it is a strenuous job.
Back in Sept. 1999, after healing from my last major abdominal surgery, I began reconditioning myself so I could continue working. By the beginning of October, I was back to doing tracking with the dogs.
Now, a search and rescue exercise is a practice for the real thing. I had an assistant who would get a friend to be the "lost" person. Then they would traipse through the woods, fields, and buildings in an industrial park and wildlife area near my house. In November, I was able to finish a five-mile course over rough terrain with relative ease.
Then in December, I began to notice my joints were very stiff for days after a workout. Then the muscle spasms started and the pain became unbearable. I went to the doctor several times for the pain, as I had gone through the same kind of pain back in 1997 after a surgery and was afraid this was going to be another round of unexplained pain.
Again, as in 1997, I was told. “You are overweight and that is why your joints are hurting. Lose weight.”
Yes, I am overweight, but I was fit. I could out walk that doctor on any given day with a 100 pound dog pulling me along as well. I had great upper arm strength from working with the big dogs.
The doctor could not explain why I was having this pain. I asked him to do something to try and figure out what was wrong. I wanted to know why one week could I lift a 70 pound dog into a van crate and the next week, I couldn't lift a full coffee pot without wincing in pain.
The pain would come and go. I noticed that when I did a lot of training on the outside course in the sun, the next few days I would be in agony. But if I worked the same routine with the dogs on the indoor jumps and did inside building searches, I had no problems.
I told the doctor, “I don't want pain pills. I am asthmatic and pain pills would do nothing but slow down my breathing. I want to know why I am hurting.”
So after many x-rays, MRI, and a bone scan, I was told, “You have a mild case of arthritis in your fingers and shoulders. You have compressed disks in your back.” Nothing in the tests showed why I would be in so much pain in all my muscles and joints.
I was told by my psychiatrist one of the doctors had written him a letter suggesting I may be an addict looking for pain medications. I realize some people may try that route to obtain drugs, but for a medical doctor to assume I was an addict without properly testing and ruling out any underlying disorders is not only unethical, but criminal as well.
I had undergone periods of pain like this for years. Every time I had to undergo surgery or had some kind of trauma or severe illness, I went through weeks of severe pain.
I was told, “You should expect pain. You just had surgery.” Yes, but the pain I was experiencing was not in the surgery site, but was all over my body.
I was told, “You just got out of the hospital from a bad asthma attack. You should expect some weakness.” Yes, but not so weak that 3 weeks later, I still could not lift a full coffee pot.
I was told, “The pain you are having is normal for an overweight, 40+ year old woman.” This was normal? Is it normal to having pain so horrific, that you have to walk with a cane? Is it normal to have to use a dog to steady yourself and to pick up dropped items because you could not walk without falling or bend over and get back up? Normal -- I don't think so. My mother, who is in her seventies, could walk better than I was walking!
It was not until I switched doctors -- again -- that I began to see the light. The new doctor (my first female doctor) thought I might have Epstein-Barr. So she ordered a full profile including a full work up for lupus, Lyme disease, and cytomegalovirii.
The blood tests came back positive on all except Lyme (which surprised me considering how many ticks I have pulled off myself following a long tracking exercise in the woods)!
Finally, a doctor had sympathized with me. She had really listened to me. She had not just pretended to listen while counting the minutes before going onto her next patient! She sent me to a rheumatologist, who after testing me some more .. and some more .. finally determined .. I had Lupus.
Finally, I had a diagnosis of lupus as well as fibromyalgia. I wasn't so crazy after all. My first ANA was 1:80 with a homogenous pattern. This pattern is one that is highly suggestive of Systemic Lupus Erythematosus (lupus). The tests showed I also had a very high C-reactive protein level which means there is inflammation somewhere in the body.
Finally, I had something tangible I could show my other doctors to prove I was NOT crazy. The pain I was having was REAL! It was NOT all in my head!
So, in conclusion, I say this -- learn all you can about your body. Be aware of how you feel and what makes you feel that way. Keep a journal and do research on the symptoms to lay a background for the doctor. I have found that if you know what you are talking about, a doctor will listen to you. If the doctor is condescending, or wont listen, change doctors.
Remember, every Lupus patient is different. What works for me, may not work for you.
This disease is called Lupus for a reason. Lupus, like the wolf it is named for, is a disease as allusive, hard to capture, and almost impossible to tame as the wolf!
Knowledge is power. Knowledge will help you cope with this disease.
This is your body and your life you are defending. Learn all you can about Lupus! Then you will know when the doctor is handing you a line of crap instead of facts. It allows you to fight back with intelligence.
To learn more about Lupus, please visit the other pages on my web site:
© 2000 - 2002 Brenda "Rion" Sewell
A Letter to be Shared with Friends and Family Can Be Found Here! Searching for ways to deal with the depression, the frustrations, the questions about lupus, I joined a support group online. LUPIES has been a wonderful gift. I have learned more from the information I found on the support web site and from other sufferers of Lupus than I did from my first doctor. The Lupies and I have become great friends and offer each other support and love. Thank you fellow Lupies!
With a very special thank you to Deanna ..
a great provider of information and owner of the Lupies online group!
May your days be pain free!
Click to subscribe to LUPIES
Lupie Wolf and Butterfly logo at the top of the page is
courtesy of © 2003 MJ Haller
Lupus Wolf background by Rion
All literary works and original artwork by Rion on this page,
unless otherwise noted, are the sole property of Brenda Sewell.
I do not mind sharing but please ask me first.
© 1998 - 2004 Brenda "Rion" Sewell
Email me at brendarion at cfl.rr.com
Back to LUPUS Main Page
All links and information contained on this site are for information purposes only.
All rights reserved. This is a non-commercial site.This site is intended for educational purposes only, to provide an overview of Lupus for patients, their families, and health care providers. It is not intended to recommend any specific treatment, nor should it be used as a guide for self-treatment.
Patients with Lupus should consult their Rheumatologist before making any changes to their treatment regimen. Changing your treatment regimen could be harmful.
No information on this site should be construed as medical advice.
Get into the Loop!
Spread the news, help to spread the word about Lupus
Visit the other pages on my site by going to my home page:
http://www.itzarion.comContact the Lupus Foundation of America or the local Chapter that serves your area for more information about lupus, or the programs and services the LFA offers including support group information and physician referral.
Lupus Foundation of America., Inc.
1300 Piccard Drive, Suite 200
Rockville, MD 20850-4303
Information gathered from :