Living with Rheumatoid Arthritis
Rheumatoid Arthritis 2004
In Jan 2004 I start to feel sick, like I had a slight flu all the time. Body aches, tired and wore out quickly. After around 4 weeks of feeling that way, I talked to my sister. She has had Rheumatoid Arthritis for a couple years and our mother had it since her late 20’s as well. She said that is how hers begun. So I made an appointment to see her doctor.
I couldn’t get in to see him for 3 months. So I lived with the pain and worn down feeling for a few months. Then I finally made it in to see him. He ran the usual tests for many diseases, having to rule out things it may be, checked for lupus, and inflammation in the blood, and for the RH factor in the blood.
Lupus symptoms and Rheumatoid Arthritis symptoms are very similar.
So the test came back and the Rheumatoid Factor was not showing up in my blood.
Rheumatoid Factor
Approximately 70 to 80 percent of people with rheumatoid factor (RF) also have rheumatoid arthritis. It is tested by measuring the amount of RF in your body. The higher the amount of RH present in the body, the more active and severe your disease is.Some people with RA do not have RF in their blood. They are called “seronegative.” People with RF in there blood are called “seropositive.”
This meant my first option for treatment of my arthritis was anti inflammatory that are commonly prescribed for Osteoarthritis.
So summer was coming and I was feeling a little better. But still I got worn out quickly and I wasn’t always pain free.
Winter came and I began to get even worse. And by the time I started feeling worse, I had another 4 months before my doctor’s appointment. I tried to wait it out, which by the way I do not recommend. After 2 months I could not take it and I moved my appointment up (also took a little push from one of my partners to get me to do that). Still I had to wait another month before he could get me in.
At this point I couldn’t even pick up a plate. Driving, well I could make it 10 miles to the country store and 10 miles back. But I would need to sleep 2-3 hours just from that. That is if I could get over the pain from driving. Sleeping wasn’t an easy thing, every 5-10 mins I would have to move to get rid of the pain. At this point if I could stand to sit at the computer long enough, I could read and post on websites, anything more then that would need me to sit here longer. So I spent time reading and sometimes posting over at v7n.com Internet Marketing Forums.
Around this time I fixed up my own Internet Marketing forum at DMOF.com
Rheumatoid Arthritis 2005
Finally a new year and closer to my doctor’s appointment. I made it in, the doctor decided to run more tests and do a MRI of my wrist (one of the places I was having pain). I did the test and a later went back into his office again.
Now I already had a strong feeling I had RA (rheumatoid arthritis). He said, there was inflammation in my wrist. It wasn’t showing up that high in my blood. And the Rheumatoid Factor didn’t show up in my blood either. He explained that the RF in the blood test was not a great test. Thirty percent of people it is wrong with, some it may say they have it and don’t, others it says they don’t but they do.
He then grabbed my file and told me if I was just to look at your file and your symptoms, I would say your problem is in the Rheumatoid family. He threw the folder up over his eyes and said if I didn’t know your blood results I would be sure of this. Which I do remember the year before when test came back he was shocked that came back with no RF in my blood.
He said I want to do a different kind of test. I want to give you a drug that if you have RA, this will seem like a miracle. You will feel so much better and be able to function again. So of course I was in for this test. So he prescribed prednisone.
For almost a year I had felt like I had a 150 lbs person on each of my shoulders crushing me and wearing me out. That is my best explanation of how I felt, if you could imagine that, then imagining it never ending, lasting all day and night, sometime getting some relief from heating pads but not much. Then you would understand how I felt.
So I begun the prednisone, and I was feeling better. And this was a good thing for many reasons. My mother was sick, had been for a year. She went into the hospital that very next day. I took my pills and went down. I was afraid to try to drive, if the pills didn’t work then I wouldn’t have been able to make it. So my sisters picked me up.
I was amazed that I wasn’t in pain when I got there. I also wasn’t worn out. I felt pretty good, almost normal. The next day I went down again, this time I drove. I still felt pretty good! The third day I stayed home and my husband watched as I whipped up and down the stairs, cleaning and running in and out of the house. He was amazed.
A few weeks later I went back to the doctors and I knew he could see I was better. But he went through his questions on how I felt, and of course I told him I felt great, I could do many things on my own again. So he changed my diagnoses to Rheumatoid Arthritis and went through my options for long term drug therapy. The drugs are called disease modifying drugs.
I understood almost everything already because of my sister already being treated with these drugs. She had been in remission for a few years already. She was on Methotrexate which is a common drug to try when you have RA. It is cheaper and older, so they know more about what it does to a person. It is often used for cancer patients for chemotherapy.
So this is the drug I started with, while on it I stayed on the prednisone for the first month and then it was time to try to wean off the steroids. But the more the prednisone when down the worse I felt again. Not to mention the methotrexate was making me feel bad in other ways.
So I went back up on the prednisone and waited the 2 months to get back into the doctor. Finally October came around and I headed back into to see the doctor. We discussed the problems and then looked at other treatments. We decided to try Leflunomide (also called Arava). This drug is a cousin of methotrexate, a little newer, made just for RA (but still a chemo type drug), and a lot more expensive. Thirty pills a month, cost almost 600 bucks. Good thing we have insurance.
So I start this drug, again wait a month and then try to reduce the amount of steroids. This time it is working, also not really many side effects. December I was able to completely get off the steroids.
During this time, I have been lucky to have wonderful partners who were able to learn what I usually did to keep things going while I couldn’t. Also my husband took care of everything for the kids, football practice, basketball practice, girl scouts, dinners, laundry, you name it he was doing it. They gave me many of there spoons!
Spoons? Christine Miserandino of Butyoudontlooksick.com wrote something called “The Spoon Theory”. She has lupus, but many with RA have used this story to explain to people they know how they feel.
I can’t thank my partners and my husband enough for putting up with my extreme crabbiness as I blew off steam from the pain. Also for taking care of things when I couldn’t.
Rheumatoid Arthritis 2006
So now, a new year has started. My next doctor’s appointment is a few days away. I think I’m pretty close to remission.
I’m looking forward to being able to do more this year. Increase business, talk to friends, attend conferences and do a little traveling.
Sometimes I do get worn out though, especially when working long hours or I have a cold (which I do now). But if I disappear, don’t worry…I will be back to write more 
Sometimes I just have to take a break.