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.

Ugh.

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.

Sick, but also Blessed

Last Thursday I thought I was going to die. I am not speaking figuratively.

When the nurse at the endoscopy clinic at the hospital took my history and then told me I’d get a call from the doctor sometime after returning home that day, I cried tearlessly and whispered, “I was hoping I would not be going home after this.”

The nurse looked startled. She studied my face carefully and said, “I’ll speak to the doctor.” Then she led me over to a recliner, where I was to be hooked up with IV fluids and wait for my procedure.

I thought the hydration would ease the throbbing at the back of my head and my temples. I was wrong. Two bags of the fluid did not save me from that wretched pain.

That mornning I had not eaten for forty-eight hours. I had not been thirsty the past two days either, even though my eyes were sunk into my head. I had sipped water diffidently because I thought I should, but my ravaged gut did not like it.

I think I scared the bejesus out of the gastroenterologist. I laid back on her table and when she turned to look at me and saw my face crumpled up, weeping tearlessly, she had no words for a moment or two.

Then she said, “Anna, what’s going on? This was supposed to be a routine endoscopy. I wouldn’t have taken you on if I’d known you were so sick.”

“I am so sick,” I told her, trembling uncontrollably. It was cold in that room. “I have not eaten or drunk water in two days. I’ve lost fifteen pounds in two weeks.” And other gory details I will not burden you lay people with at breakfast time.

She did the procedure, of course. And my esophagus and stomach looked beautiful. Just like all my other organs, my urine and my blood, which were tested thoroughly on two visits to the ER in the preceding days.

“I have to send you home,” the ER doc said both times, and both times I cried and cried.

At least the second time they sent me home with Percocet.

So the bottom line is that I was exquisitely healthy and wretchedly ill at the same time. I was having a toxic reaction – what my PCP described as a “remarkable reaction” – to the new medication I had started just before my symptoms came on. It was possibly my last hope for a tic medication that would not make me ravenous all the time except during sleep. My last hope, I thought, to take off the weight these beastly meds have put on me over the past twelve years.

How ironic that the toxic medication did just that! (Well, about half of it. I’m down 18 pounds now, and looking more like my “real” self.)

And finally I am feeling better. Eating small amounts of food. Thinking I will most certainly live. The tics are a problem, but I have promised myself to try non-pharmacological methods to control them now. Maybe acupuncture. Maybe hypnosis. No. More. Drugs. (Unless I get truly desperate.)

But Readers, there was an INCREDIBLE bright spot in my two weeks of woe. You might remember I told you, back in September, that our Rabbi, who is a faithful reader of this blog, invited me to speak at Yom Kippur services this past year. And I spoke about raising Benjy and confronting challenges with what I hope amounts to grace and resilience (not that I always do. Not by a long shot).

And because our congregation is unbelievably awesome – a group of folks that is eclectic in every way except for in their passion for social justice, their compassion, their learnedness (OK, that’s eclectic, too) – they responded in ways that brought me a lot of joy. Hugs from people I did not know, earnest hand clasping, thank-yous, reciprocation in the form of telling me their own stories of pain and resilience.

And some of them began reading this blog because they cared about following our family’s lives. How wonderful is that?

I don’t want to go into details, but some beautiful person or people among them have blessed us in the most astonishing and lovely way – for Benjy’s sake – and Lars and I found out about it during our second trip to the ER. Let’s just say tears of anguish turned to tears of gratitude. And then we laughed. And then Lars said, “Maybe you should not write so openly and honestly.” And for a few moments I thought he was right.

But then how am I going to let the world know about the various costs, to families and to society, of disability – especially mental illness? Those costs take different forms, and it almost feels like an ethical obligation on my part to start a discussion about them. Certainly in light of recent events – and the challenges of accessing good mental health care for children and adolescents in this country -- it seems so.

It has always been hard for me to accept help of any sort.  My bestie visited this weekend and wanted to clean my crazy-dirty kitchen. And I hemmed and hawed and said no, I can do it, until finally she said “Just sit your ass down on the couch and let me clean the damn kitchen! That’s why I’m here, Dummy.”

(“Dummy” is a term of endearment. She loves me.)

I’m not sure why it’s so hard to let people help. But I’m working on that, reminding myself that I help others in our situation when I can, and am happy when they let me do so.

That’s what community is about, right?

So all there is really left for me to say to some special person(s) whom I have touched and who have deeply, deeply touched us is:

 We love you. And thank you.

I Don't Know How She Does It

Did you ever read that book, I Don't Know How She Does It? It's a fun read, all about a working mom competing (in her mind) against the "mothers superior" (read: stay-at-home moms) and feeling like she'll never hold it together. Of course, she does, and with aplomb (and a large measure of stress and disarray).

Well, I felt rather like Kate Reddy, the heroine of that book, when I was working full time and parenting two children, one disabled -- although I'm not sure I did anything with aplomb. I kept us all fed and clothed (more or less -- not counting the holes), and kept Benjy alive. I guess that's saying something.

Now I am not working and I feel, if possible, even more like I can't hold it together. I didn't feel that way at first. But now that Saskia's illness, whatever it is, is waxing, now that we are seeing "ologists" every week, and she continues to feel exhausted and full of malaise, grow new lesions, lose hair, look ghastly white, AND SO ON, I am beginning to think I'm going to lose it.

I would give my left arm -- and I'm left-handed -- to be one of those prosperous, healthy families we seem to be surrounded by. I'd be willing to forgo prosperous. Just make us healthy, please.

So here I am, losing it. Actually, not so much. Instead of losing I am gaining. What consoles me is food, preferably of the carby variety. So I'm eating myself silly. Why oh why couldn't I be one of those gals who STOPS eating under stress? Just lucky, I guess.

Good thing I am too tired lazy to go shopping to replenish our stores; all I had in the house this morning was kale. So I will shortly be consuming some AWESOME homemade kale chips. (I really do mean awesome. Kale chips are yummy AND good for you.)

Next on today's agenda is a meeting with Saskia's teachers, to plead with them that they reduce Saskia's homework. she comes home from six hours of school to face four to six hours of homework on a regular basis. This must violate some child labor law, don't you think?

Anyway, that's my rant for today. I promise to return to the old upbeat programming as soon as possible. So stay tuned!

Anxiety -- Mine, not Benjy's

Today, I'm anxious. About both my kids.

Tomorrow Saskia and I go to the rheumatologist. I am hoping, after a year or more of observation, we will be closer to knowing if she has an autoimmune disease. Not because I want that for her -- God no -- but because knowing is better than waiting to know. At least then you can move forward. So poor Saskia will have to deal with the indignity of being examined by a rather handsome (and old -- my God he must be FORTY!!!!!!!) male doctor, who does not appear to be gay, as does her hematologist. (Gayness makes examinations a bit easier if they include disrobing.) Then there'll be lots of blood drawn, which she hates, and then we will wait a few weeks to see if her numbers have gone up or stayed still.

Probably we will be no better informed tomorrow than we are today.

I wish Saskia were all I had to worry about. But now I am concerned about the intentions of our school district. They seem to have something up their metaphorical sleeve, and I don't like it. First there was the IEP (received around 2 months after our meeting!) with errors (or, "errors," as the case may be) on the placement page. These errors could mean the difference between Ben staying where he is, at the Joy School, and being shunted off to another placement (a collaborative or in-district will be over my dead body, so if a couple months go by and you don't hear from me you'll know why).

Then, an email today from an administrator asking for a meeting about placement -- just her and me, it sounds like -- which raises a red flag in my mind. No meetings will happen without our advocate, the divine Laurel C., and Lars by my side -- and ideally, the rest of the team.

Wondering what the heck is going on with these people, what they intend for Benjy, is FREAKING ME OUT. Because, for the first time since he started school at age three, Benjy is relaxed, happy, and learning. The other day I picked him up and he was glowing, just glowing. He piled into the car and said, "I'm happy, Mom! I love my school."

Just thinking of it makes me cry. If that Chinese woman whose piece about being The Tiger Mom I read in the Wall Street Journal thinks she's tough, just wait until someone tries messing with my boy. I will be AS TOUGH AS A WOLVERINE. I mean it.

Meantime I am supposed to be writing -- I have a self-imposed deadline because a mag is waiting for a piece from me -- and all I can do it stare at the fish tank. (Ick. It needs to be cleaned.) I am anxious, and I am distracted. Maybe I've stepped into Benjy's life. (Not for the first time -- I know where his issues come from.)

Well, tomorrow is rheumatology day. Maybe by tomorrow night well be a few steps closer to clarity, and I'll be able to relax a little.

New Worries

Having a child with a disability can be heartbreaking. And terribly difficult. Having two? Or three? I can't imagine. Sometimes I try to, and it's a good perspective builder. Our lives are hard, but they could be harder.

Sometimes all I have to do is think of my parents, who lost a child. How on earth can you survive that? They did, though, even if they thought they wouldn't. They epitomize strength, grace, and optimism. I love and admire them so much. And I have always been grateful that cancer is not one of the things we've had to confront -- not yet, anyway.

But now we may be joining the ranks of people with two sick kids. Because it's looking increasingly likely that something is wrong with Saskia. For the past year or so she's been under medical investigation. There are signs of an autoimmune disease like lupus. There are also signs of a hematological disease. Those signs are still ambiguous. We may not have a definitive diagnosis for another year or more. And I am scared to death.

The visits to PCP and specialists have begun again in earnest after six months' reprieve. I am trying hard to avoid Google. Trying hard not to imagine the effects steroids would have on Saskia if she has lupus and has to take them. I'm reading the headline Nick Cannon says, 'Lupus is eating my kidneys" and thinking, Shit.

But then, there are entire towns in the south and mid-west that have been wiped off the map. Entire families have died, sucked up into a deadly maelstrom of wind and debris. What we have, we can live with. I think.

We have two people to help us on this journey -- they've helped us through all our journeys -- who have lived through any parent's worst nightmare and come out of it whole. They'll get us through -- won't you, mom and dad?