Wednesday, May 8, 2013

My Newest Medical Specialty*** UPDATED

Remember, Readers, how I have become practically board-certified in all those medical specialties I've been forced to deal with for so many years (neurology, psychiatry, developmental pediatrics, and rheumatology)?

Well, I am learning even more about the world of autoimmune disease. (That's rheumatology for all you uninitiated lucky folks out there who don't know.) Remember Saskia's possible lupus, and all those tests (and costs!) and symptoms and office visits? Well it turns out she's not the only one. Because all the ways in which I have been sick since November (very unpleasant ways, I might add) turn out to be likely inflammatory processes, and my blood work so far points in that direction.

Of course, I diagnosed myself weeks ago. I have a bad habit of doing that, to myself and others (do you know how many people I have diagnosed with Asperger's??? it's not even funny) -- and sometimes I am quite right.

This time I know I am. The burden is on my new rheumatologist to prove me wrong. (Some pending blood tests will tell all, I suppose.)

I think I have Sjogren's Syndrome. If I don't then maybe I have lupus with secondary Sjogren's (yes, that can happen, evidently, and you KNOW it would be just like me to get them both). I'll let you know what I find out.

What is clear is that the enormous stress of caring for Benjy all these years has not been good for my health, and has probably exacerbated my recent symptoms. That is a hard truth for a mother to hear when she loves her child so hard it hurts, but recently I have heard it.

So lots is brewing here. Benjy is doing better in the hospital than he was at home, and I am resting as best I can (while managing twenty phone calls a day and several meetings a week, not to mention visits with my boy).***** Today Lars made me promise not to drive into Boston to see Ben, because yesterday I was unbelievably tired and sick when I got home, I believe due to a longish walk in the sun with a good friend. You are not supposed to do that if you have an autoimmune disease because it makes you sick -- I know, that sucks -- but I did it to gather data. It just made me more convinced in my self-diagnosis.


But here is the beauty of it all: Sjogren's or lupus, or lupus plus Sjogren's, are not cancer. They are not heart disease. They are not one of those dreaded prion diseases I keep warning you not to Google.

In other words, they are not going to kill me -- not in 2013. (I believe the writer Flannery O'Connor died of lupus but that was in the 1950s so I am not going to worry about it.)

I may have even more crap to deal with going forward but I WILL be here for my children and my Lars. For Benjy, who will need me most of all, and for as long as possible. My sister was not given that chance. Cancer killed her while her kids were still so little there was no way of knowing what kind of people they would be come, or what they would accomplish. She did not ever get to know what beautiful and sweet and awesome adults the three of them became. And I would imagine, while her memory lingers in them, they do not REALLY remember her well at all. They were only ten and seven when she died.

That is more terrible than anything. So, I can deal with any rheumatological shit that comes my way. My biggest challenge henceforth (as is has been for several years now) is making sure, as best I can, that Lars and I do not suffer that most awful of losses, as my parents did seventeen years ago.

I have GOT to keep Benjy safe. We're working on it, with the best team you could ever imagine.

***** Not anymore, baby. I am done. Those phone calls wiped me out so utterly I could not do anything but sleep the rest of the day. Yesterday was a nightmare. And today once again I will not be able to drive into Boston to visit my boy -- I can barely function. I will not be able to get myself to Cambridge tomorrow for a medical appointment. I will not be able to get Saskia to her concert at the Museum of Fine Arts tonight without help. Oh, boy. Sorry for the SOB STORY readers. Just feeling...confounded.

1 comment:

  1. Thinking of you today, and how very strong you are--and how much of your strength you give to your kids. Hugs, and I hope you're feeling better.