I learned recently about an elementary school in Ithaca that is educating its students about disabilities. One fourth-grade class at Cayuga Heights Elementary had a visit from a woman with RA and got to learn more about the disease:
“The project’s goals are many — to help children learn what it’s like to live with a disability, move beyond stereotypes about people with disabilities, learn how to interact and be friends with children with disabilities, and find out how all people are similar yet unique” (The Ithaca Journal).
I applaud Cayuga Heights for this project. There are so many stereotypes out there about people with disabilities. People expect you to be disfigured and in a wheelchair. They don’t understand invisible illnesses such RA.
I cannot even begin to tell you the number of times I’ve been questioned about my handicap parking pass or whether I am really in pain. It may be all in my head, but I feel that often teachers and classmates think I am making up an excuse when I say I can’t do something because of a painful flare-up. Just because you can’t see the pain, doesn’t mean it isn’t there. Unfortunately, those that don’t live with chronic illnesses like RA don’t really understand that. Again, this may be in my head, but I feel like I constantly have to justify that I am not lying about the pain.
It is because of all this that I feel it is extremely important for others to learn about RA and other invisible illnesses. It is through this knowledge that they can learn to accept and better appreciate those that live with chronic illnesses day in and day out. The younger people learn about these illnesses, the better in my book.
Until next time,
S.P.
I have long felt that RA (and other chronic illnesses) are often getting the short end of the stick when it comes to healthcare. While the current focus of the U.S. healthcare system is to get everyone covered so they can pay for their doctor visits and preventative healthcare, what about those of us who are already sick? Being able to see a doctor is only a small part of treating chronic illnesses such as RA.
In order to function properly (and not be stuck in bed all day with joint pain), we need expensive medications. The latest and greatest RA drugs (aka biologics) are expensive. They can cost a few thousand dollars a month, which for a lot of people — even for those with healthcare — can be incredibly expensive.
I feel that those of us with chronic illnesses often are ignored by the healthcare system. And I don’t think that it is just this way in the U.S. I recently read an article from the Deeside Piper and Herald about people bringing these same concerns before the Scottish Parliament. This article touched on many points that struck me as so familiar. I am curious if people in other countries have felt slighted by the healthcare system as well, so please tell me about your own experiences.
Until next time,
S.P.
“A large study conducted in Canada reveals that patients who are treated for rheumatoid arthritis (RA) with the drug cyclophosphamide may have an increased risk for developing hematological cancers such as lymphoma” (CancerConsultants.com).
Cyclophosphamide is an immunosuppressant that belongs to a class of drugs known as alkylating agents, which were, ironically, originally developed and are still used to treat some types of cancer. Like most RA drugs, cyclophosphamide can increase your risk for infections. It is because of this susceptibility for infection that researchers worry that immunosuppressant drugs may increase one’s risk for developing certain types of cancers such as lymphoma.
The purpose of the 23,810-person study was to determine if anti-rheumatic drugs, such as cyclophosphamide, were associated with risks for certain cancers. During the study:
- “619 patients developed cancers of the blood or lymph systems
- 346 patients developed lymphoma
- 178 patients developed leukemia
- 95 patients developed multiple myeloma
- The most frequently used drugs included methotrexate, azathioprine, and cyclophosphamide. Only cyclophosphamide, however, was associated with an increased risk for lymphoma” (CancerConsultants.com).
According to the article, the results indicated that though immunosuppressant drugs might increase the risk for blood or lymph system cancers (UMMMMM…WHAT!), cyclophosphamide showed the greatest risk for lymphoma. Just hearing that freaked me out.
I take BOTH methotrexate AND azathioprine (also known as Imuran). So is there something else I should be monitoring? And I always thought of these drugs as ones that fight cancer since most of them started as cancer drugs, so this seems so out of left field to me. I’m going to have to do some more research and ask my rheumatologist about it. But just tell me this study doesn’t freak you out?! I don’t want to wake up 10 years down the road and find out these meds that I thought were helping are actually going to kill me. It’s kinda of a Catch-22. Scary.
Until next time,
S.P.
