Doing Lupus

Lupus is such a versatile disease and it is great to read and learn about those who are living "normal" lives; but I can't help but feel that somehow the rest of us (so very many) will be forgotten or our struggles glossed over because of the mentality that says, "Look, she/he is able to do __________ and she/he has Lupus." I'm concerned that the subtext to that thought is, "...so maybe it's not that bad."

It is that bad. When you must choose which one or two activities you will perform, and one of those activities is only driving a few miles, getting out of the car to go in and pick up a prescription, then driving back home while you still have the strength to do so, what we are dealing with is that bad.  That was my yesterday. I visited my mom in the nursing home for an hour, then went to the pharmacy and drove back home, and that was it for me because I had to rest up in order to be able to prepare dinner.  My recovery time was about three hours; and forget about the washing up after eating dinner. Oh, I forgot to include showering and getting dressed before I left the house. Many days, showering and getting dressed is all that can be managed and we spend the day clean, smelling and looking good, but unable to expend any further energy.  And that only addresses the Toxic Fatigue (thanks to my sister Purple Lady, Malissa for the term), not the 24/7 Ball of Pain that we happen to also be. My neurologist and I discussed the fact that when referring to a pain scale of 1-10, most people cannot relate to the fact that an "8" is normal for me and doesn't have me clawing the walls and screaming invectives at the Goddess of the Universe.  I would be disingenuous, however, if I did not admit that at times I do shed tears, sob even,  not only because of the physical pain, but at the emotional pain of sheer frustration that I must live like this.

The latest in my saga is that my medication has begun to erode my vision.  Well, that's just dandy, isn't it? None of the medications that we take are side-effect free, but this one has relatively low-level side-effects -- except for that pesky seeing thing -- and has the added benefit of protecting against clotting problems; and the clotting problem is an additional issue that is interfering with my Guns. Dang it!  Long story short, must needs drop this med in favor of something less desirable. Told my daughter that I'd prefer to stick with this so that I can keep performing at a higher level (subjectively). Her response was, "Uh, Mom, if you can't see, you will not be performing at a higher level because you won't even be able to drive yourself anywhere." I raised a smart young woman, didn't I?

Anyway, the point of this little piece is to remind you that while I cheer for everyone who is fighting the good fight of whatever incurable disease they might be battling and climbing Mount Kilamanjaro in the process, I'm asking you to please also remember those who are fighting just as hard, but are only able to accomplish maybe one-tenth of what that marathoner or Zumba instructor is able to.

Go well, and stay Fabulous!