Is it rheumatoid arthritis? Lupus? Scleroderma? These are a few of the diseases Sjogren's Syndrome mimics. Because it can appear like so many other conditions, it is hard to diagnose.
"Sjogren's Syndrome is a chronic autoimmune disease in which peoples white blood cells attack their moisture - producing glands." (Sjogren's Syndrome Foundation).
"Sjogren's is a systemic disease and affects the entire body. Many patients experience dry eyes, dry mouth, fatigue and joint pain. It can also cause dysfunction of other organs such as the kidneys, GI system, blood vessels, lungs, pancreas, liver and the central nervous system. Patients may also experience severe fatigue and joint pain and have a higher risk of developing lymphoma" (Sjogren's Syndrome Foundation).
My father was diagnosed with this syndrome almost 20 years ago and has graciously agreed to share his story with us.
I was fine up until age 50. I was strong, had lots of endurance, could work all day and dance all night. I went broke farming and had to take a job. I found one I could do, which was truck driving. One day, at the beginning of early spud harvest they sent me and other trucks to Oregon to load spuds and bring them back to Burley.
I drove, got there one evening, shut the truck off, opened the door to get out and fell on the ground. My hips and knees hurt so incredibly bad I couldn't stand. I had never felt pain like that in my life.
I was very scared because I had a job do, load the truck the next morning and come back. I couldn't even walk let along climb up on the truck. They had put us up in a hotel room so I had access to a bathtub. I took a hot bath, that helped a little but not much. So I went to bed and hoped I could sleep it off. The next morning was the same, so with great effort, I hobbled out to the truck and somehow got the truck loaded and drove back. It was horrible.
I made an appointment with a Rheumatologist in Salt Lake. I was diagnosed with Sjogren's Disease. The doctor wanted to give me medication to shut my immune system down.
Sjogren's is an autoimmune disease, and the theory is if you stop the immune system it can't attack the body anymore. Of course, you have no defense against disease either. So, I told the doctor I didn't want to do that. I was prescribed Plaquenil and Diclofenac (Voltaren) to reduce the swelling and pain. That helped.
I had to continue working during all this. I had some good days and some incredibly bad days. As the doctor explained, if you do nothing the pain will eventually go away by itself, but will eat up the membrane surrounding the joints and the cartilage between the bones in the meantime. That proved to be true but one needs to continue working regardless, no alibis, no excuses, no time outs.
During the extreme breakouts I couldn't work. Fortunately, they occurred at night or the weekends. I took the medicine religiously and eventually the pain regressed. I never was as strong afterwards, it takes an incredible amount of energy to overcome the pain.
So, I live with it. The human being has an amazing ability to adapt to almost any situation. The comfort coming from belief in the Lord helps with that. Attitude makes a big difference, not with the disease, but with how one accepts and deals with it. Knowing there is reason for it, that this is a special case and there is a better existence coming gives me hope.
I am 69 now. Plaquenil has gotten blacklisted and they won't prescribe it anymore. Too bad... it worked. Now I can only take Diclofenac and it's not as good. The cartilage in my knees is completely gone and it's getting there in my hips.
I walk 2 miles a day and if I don't I get so stoved up I can't function. The old adage, "use it or loose it" applies.
They have artificial knees now and artificial hips also. They can rebuild you, but it will cost you about 6 million dollars.
It's not fair... but what is?
We were not meant to live here forever.
Today's guest poster is my father, Rex Hill. He has been living with Sjorgen's Syndrome for many years. He is very knowledgeable and is getting very good at "managing" this syndrome. If you would like to connect with him, he can be contacted at firstname.lastname@example.org.
For further reading please visit the Sjogren's Syndrome Foundation website.
Labels: Sjogrens, Stories