Things I have learned

One of my nurses (who actually has a PhD in nursing- how cool is that?) told me once that lupus should come w/ a doctorate. The longer I live w/ lupus, the more I tend to agree. I have learned about so many illnesses, their symptoms, treatments, and lasting effect on both the patient and their loved ones.

I know what labs are ordered for what reason now and can interpret alot of the lab results. I have learned more than I ever cared too about things like blood and urine....and even more about blood in urine and how to tell what that means. White blood cells can be different than red cells which is different from whole blood which is different from leukocytes....etc. Interesting in a way but something I would have been just as happy to never learn about. I can read my own lab results now much easier than anybody can explain them to me.

I have learned some things that are of little actual use to me too.....like how to re-set an IV pump when it messes up or gets an occlusion and starts beeping and how to remove an IV. Things that I still have to wait for my nurse to do when I get my IV every month because of some rule somewhere...may be do to study protocols??? I tend to blame anything I am not allowed to do for myself on study protocol because the rules about how much drug is given how often and by who is pretty set in stone and not at all flexible. (I've been on the med for 6 years and get IV infusions every 4 weeks. I feel like I should be able to push a button and fix a problem instead of having to interrupt something a nurse is doing to come push the button!)

I have learned ALOT about drugs and their interactions- with each other and with our bodies. I can tell you about "off label" uses for everything from anti-malarials and anti-rejection drugs to uses for OTC meds such as benadryl and mucinex. I have also learned alot about what meds you should never mix and that you have to be careful about what vitamins you take...especially if you are on medications.

To me the most interesting (and in my opinion, important) things I have learned though are more human nature related. I have realized that when you are diagnosed with a chronic illness you learn alot about who your friends are and who they aren't. I think this is especially true with an illness such as lupus which tends to present itself in young females (most often in somebody's 20s or 30s). I think it's human nature to deny our mortality and not want to face the possibility of a serious illness. When we get sick, it makes our friends think about themself in our place and alot of people- especially younger people- get scared. I don't think we lose friends so much because they don't care as because they aren't ready to face the fact that nobody stays young and healthy forever- including them. It's much easier to avoid somebody who is sick than to think about the possibility we could get sick too at some point. On the positive side though, I realize that the friends I have now are real friends and are not going to disappear just because I don't always feel like doing everything. They are their when I get scared or frustrated and can usually tell when I need to talk or vent as well as when I need to rest. They ask how I'm feeling and actually care about the answer. Almost all of them have their own issues they are dealing with and I think this helps them to understand how I feel and to be patient with me when I am having a bad day. Some of my wonderful friends I wouldn't even have the privilege of knowing if it weren't for my lupus.

I hate lupus and pray for a cure but I am also thankful for everything I have learned (and will learn in the future) as well as for the friends I have made and the wonderful people I have met because of my diagnosis.