RA body
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Rheumatoid Arthritis, living close to the edge

We all know that having  rheumatoid arthritis means living with painful joints. Increased inflammatory factors might make you feel sick as well. You may wake up that way every day. You might end your day the same way. You may  live variations. Your life just doesn’t seem like those of the people in the rheumatoid arthritis drug ads that you see on television. Life with RA is not easy. Sometimes it is very hard.

There is the 30% who have no relief from the biologics or any medication.  And then there are people like me who have complex histories. I have  three cancers and a degenerating spine. That means I have been on and off RA drugs many times. The cancer-causing biologic medications are off the table and  lower the number of biologics available to me.

There are those who have  50% relief with their biologic medication. A very few have 70% relief. There are many who have 20% relief with the biologics. It is hard to function with so little relief although it is considered a successful response by the drug companies.  At the present time I am having about 50% relief with  a combination of Orencia and Leflunomide. My flares are shorter and farther apart. Tolerable.

Living with chronic pain is hard. Living with the sick feeling of flares is very hard. Living with the uncertainty of a disease that can be immobilizing without warning is also very hard.  My life is good and I am grateful for it. However, I take issue with those who dance around the difficulties of RA. It is like they are afraid to say life is tough. Saying it is tough doesn’t make it harder but it does give you an appreciation of what you are dealing with when you have rheumatoid arthritis.

What I wanted to say is that I came very close to falling down the slippery slope into into territory that is unforgiving and has no escape. RA requires rising to next challenge with an energy I don’t always know if I have. But deep down I realize that if I don’t rise to the occasion, stretch, push myself, manage more obstacles, swallow more pain, it will be all over. People become tired. Discouraged. Had enough. Live uncertain lives not knowing what is going to happen next.  But. Catch themselves just in time as they start  sliding down the slippery slope. I was lucky.

RA is a chronic disease. Chronic disease means forever. It means being in it for the long haul. It is an elementary  tenet that we need to learn to accept. At the same time, we can respect our strength and our ability to manage the extra demands made on us by a challenging illness that doesn’t have the answers we need. We do the best we can.

This entry was posted in: RA body

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Woman, friend, mother, RN, photographer, gardener, writer, researcher, observer, swimmer. Pretty much the same as everyone else with my own little twist to things. RA, and three cancers and counting. Life is good despite the obstacles. It's worth the ride just to see the infinite variations of the human spirit.

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