my story, my-daughter

The energizer bunny

I’m starting to feel like chronic illness just keeps going and going and going …

I know that’s the definition of chronic, but I keep getting my hopes up. I suppose the right thing to focus on is that life goes on too. And for the most part, I do. But this is my space to talk about other things. Like my daughter, who is continuing to complain of daily belly pain even after the constipation treatment. We’re waiting on the results of an x-ray to see if constipation is still the cause, but she’s complaining of headaches now too and I am not hopeful.

While she is obviously a focus of my concern, my own situation is also not so great right now. I’ve experienced a lot of pain, fatigue and brain fog recently, some temperature regulation problems, ear ringing is back, and so is napping and a little dizziness. I am ramping up the yoga again and taking frequent salt baths. I am also trying to get my sleep patterns back under control. My homeopath/MD suspects yeast, and gave me a bunch of supplements and diet change (low carbs/sugar) to help with that, but I’m also going to see the endocrinologist because my appetite has been out of control, which happened the last time I was hyperthyroid. Tomorrow bloodwork, then we’ll see.

Anyway, I’m surprisingly cheerful despite all this, and I’m still hopeful it’s a temporary symptom uptick. As I said: my bigger concerns are with how to help my daughter. But I wanted to give an update nonetheless. No interesting stories or major insights today, just the realities of ongoing chronic illness.

kids, my-daughter, thoughts

Lost

I am starting to feel truly lost, mired in the confusion of not my own, but my daughter’s invisible, confusing problems. This I know: something is not quite right. I also know: many things are right, more than right. But illness does not define the person, it influences some but not all and sometimes in subtle ways. So while my daughter is a wonderful, growing, living, thinking, loving, energetic, imaginative, kind, thoughtful, difficult being and all of that is at some level normal, I also need to trust my gut when it says: something isn’t quite right. Especially when it’s not just my gut, but also my daughter who is telling me this.

She complains frequently of belly pain. She says it’s getting worse again. She is unhappy, starting to have dark bags under her eyes. Every morning is a struggle, she frequently threatens not to eat, not to go to school, etc. There is always something that becomes the thing that gets in the way of the morning moving forward. It’s not quite like last spring, when she ended up in fetal position on a daily basis (or more often) but it’s still pretty extreme at times. When she feels truly overwhelmed she runs up to her bed, crawls under the covers, and curls up saying “nobody loves me, nobody loves me, nobody loves me.” It breaks my heart to hear her. I hold her when she lets me, try to talk to her, try to give her comfort and calm support, though sometimes it is overwhelming to do so. I wish I could take away whatever troubles her.

And so I am trying something: taking away foods that might be the source of her troubles. We are in the middle of a 3 week trial of no dairy because of antibodies to casein that showed up in her bloodwork. She at first said that things were much better but now says they’re getting worse again. Today when I was driving her home she looked sad in the car, so I asked if she was feeling sad and she told me that a fairy she knows had died. She seemed so sad about it that I picked her up when we came inside and she cried and cried in my arms. When I tried to ask her about things that might be upsetting her she said that none of them were, and then reiterated her sadness about the death and broke into wailing tears. After I calmed this down, she got back into fussing, and it took me almost two hours to get a smile out of her (or get her to eat any food). In the end I got her out of her funk by insisting she come outside with me, placing her on the garden fence, in the sun, and getting her engaged with raspberries and a humungous crazy vine I needed to pull out. After that she ate and was fine all afternoon (we had friends over) but as soon as they left she crashed again.

This was worse than usual, but not by that much. I am considering going to a no dairy/no soy/ no wheat diet for a while to see if that helps. A friend/parent says that casein, soy, and wheat all have chemical similarity and if she has a problem with one she may have a problem with all. Although this person has done a lot of research on this (and works as a health professional herself, in addition to having a child who is casein/soy/wheat free), I am currently trying to track down a primary source can give more information about this. If anyone has leads, please let me know.

In the meantime, we continue with the dairy and may try the full hypo-allergenic diet just because the cost of doing that for 3 weeks or a month is low, and if it helps enough to justify the diet change, it certainly ought to be obvious! In the meantime I will do my best to provide her with the comforting, calm presence she needs. It’s not hard when I think of how confusing and difficult this must be for her. After all I’ve been through the confusion of an unknown, misunderstood dragging problem myself, and I was lucky enough to be 34 instead of 4.

kids

… and then there were three

I received the news a few weeks ago that my daughter also has lyme disease. Her Igenex labs (Western Blot) were clearly positive, where they had previously been indeterminate. For my son and I, this was never an issue, and so I hadn’t read up on it much before (though I was familiar with the concept thanks to Weintraub’s book Cure Unknown). Here’s what I found: Continue reading “… and then there were three”

kids, thoughts, treatment

June already!

I’ve been meaning to write a post (and answer comments) for a long time now, and life keeps getting in the way. I suppose that’s a good thing — I’m busy because I can be. On the other hand, I’m also busy because I still need more sleep and time to care for myself than I’d like, keeping to the routine in my treatment plan is time consuming.

I think the biggest change is that I am no longer  fighting the wrong thing. I relapsed, and I spent weeks fighting the wrong thing. I wanted to punch something … the lyme disease … but I couldn’t get to it, I couldn’t pick it up and squish it between my fingers and feel it pop and die. I couldn’t burn it and watch it shrivel up. I couldn’t do any of those things. Continue reading “June already!”

kids, thoughts

Liberating Constraints

Somebody asked me a few days ago, how I am able to live with and accept the impact of Lyme disease on my life. The resulting conversation helped me achieve a new understanding of what it means to live with a chronic condition.

Because Lyme disease is potentially curable, I find myself living with constant cognitive dissonance. On the one hand, I must believe I can be cured. Otherwise why treat? Also, treatment is less effective if you don’t believe in it. This creates a situation that requires faith. On the other hand, I must accept things the way they are. Otherwise I would constantly be unhappy with my lot. This is not always easy. After getting everything back, losing pieces of myself again is at times agonizing. There’s nothing I can grapple with physically in this fight, and sometimes I get tired of fighting. But in the end, giving up would be far worse than continuing, so I keep going. Continue reading “Liberating Constraints”

kids, my-daughter

So sensitive…

My daughter is four, and she is a puzzle to me. She has always seemed so strong, so robust, so determined, so healthy (unlike my son). Yet she also shared the repeated summer time flu and frequent sickness of my son up through January of 2009, after which her health was excellent. Despite this, to be sure, we got her tested, and her test results were ambiguous, like his. She otherwise seemed fairly healthy, except for frequent complaints of stomach pain that we tended (perhaps too easily) to blame on her clear wish to emulate her brother on all fronts.

As a result, we decided (with input from the doctor) to do a test on her that involved giving her antibiotics and then testing her urine for lyme DNA. This provocative use of antibiotics normally goes on for a week, but the doctor recommended treating her for a month and then revisiting things. This was  because her test results combined with her history were worrisome. Since then she also tested positive for mycoplasma, a co-infection that may be associated with Lyme disease. It was thought that treatment (for a month) was safer than the possibility of Lyme symptoms developing.

At first, treatment went fairly well, with my daughter having a much easier time downing the drugs (at least on the surface) than my son did. However, over the past couple of weeks, she’s had more trouble with it. About 10 days ago, she got the flu and couldn’t hold the drugs down, and after we restarted them, she seemed to get more and more unhappy with them. At the same time, she did not seem to recover her energy, and her belly pain became more and more of an issue. It is so strange to see her actually acting sick, to the point that it sets more than a temporary limit on her activity levels, that my husband and I decided to stop the drugs (without input from the doctor). We speak with him tomorrow and I don’t know what he will feel about our decision, but my gut said that the antibiotics were hurting more than they were helping and I went with it.

What’s particularly unusual about my daughter is that, at a time when my son seems to be coming out of his shell in so many ways, she suddenly seems to have sunk into hers. Normally a robust, outgoing child, right now she desperately needs to be close to us, reacts to even the slightest bump as if she’d drawn blood, and is very fatigued. There are dark circles under her eyes, and tonight she was so tired that she volunteered to go to bed without a book and before her brother, an unheard of event. Even her dreams are plagued by strange worries. Her most recent one shocked me with its darkness — she dreamed that all the creatures on earth (“the people, the animals, and even the gnomies”) were dead. Even more wierdly, it’s as if she’d read my mind — I just finished a book about climate change that sent me to bed with the same worries.

I know about herxing, I know that sometimes you get sick before you get better, but she got better on her own, before we started any treatment, and now she seems worse. It is impossible for me to know what caused anything in her case, and I certainly don’t have any answers except one — with both my children, I have to keep following my gut. I just hope that she recovers quickly, whatever the cause of her symptoms.