I always thought of blogs as being narcissistic, business related, or as my sister's, a way of keeping in touch or memorializing.

But, by necessity, I am learning a lot about myself. I find I need to get my thoughts out, and it helps me to know that someone else will read them. So I have created this little space for myself, to express the things I have trouble saying (be it emotional or physical trouble), to share what I'm going through, and what I'm learning through it.

I absolutely welcome comments. It's nice to know how people relate to what I'm saying.
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Tuesday, 6 March 2012

Updates: mold, naturopath, California, sleep

So long since I've written, and in part because there is much and yet little going on.

There is little going on in terms of my physical and emotional condition; I am still fatigued, malaised, in discomfort etc etc. I am still struggling with sleep. I am still dealing with the emotional fallout of this long relapse, and the discovery of mold.

Yes, that's the big news - we had people come in, and found high levels of mold in my basement, my bedroom, my parents' basement, and to a lesser extent my living room and the bedroom in which I sleep at my parent's house. Joy oh joy. It's not like we already had enough to deal with. And I'm so glad I can say "we" instead of "I".

My incredibly dedicated father, who is already taking care of me, and his mother, and his business, and to a great extent my son, is now having to deal with my condo-corp, mold testers, mold remediators, and insurance companies. Fun, fun fun! And not only that, but the levels in my bedroom are such that my osteopath strongly recommended that I not sleep there until we can have it dealt with. So I am officially pretty much moved back in with Mom and Dad until further notice. Breathe, Andy, breathe. Just don't breathe moldy air.

I don't know that I can accurately count the number of times I have moved in and out of my parents' house for one reason or another, all having to do with life circumstances and none actually having to do with money, which is why people usually move in with their folks. Not me. I'm far more dramatic! I move in because there's toxic mold in my house, or because I need a place to go with a brand new baby. But seriously, I thought that this last time I moved out would be the last time. That's why I bought a house. Nearby. And moved out. With my son. And ALL my stuff (ok, except my science notes from grades 8 that are still in a box in the basement). And I think the real issue is that while it is amazing to have them to fall back on, I'm tired of having to fall back. Even if it's not permanent. Even if it's only for another month. Or two. Or three. I like my house. I want to live in my house *simper and whimper*.

The numbers, according to the mold remediator, are not so high that otherwise healthy people should worry about them - they're high enough that we should get rid of the stuff, but not high enough to lose sleep over. Good thing I wasn't losing sleep over that - he he he -my sleep loss happens to be a lot more general than mold concerns. Nobody else in my family has been affected. My son is fine, my parents are fine. It's just me, and probably me because of the way my immune system is compromised. Or something like that.

Ok, so moving in slightly more permanently yet still temporarily with my parents has implications. And I haven't dealt with those yet. That's why I'm going to therapy tonight. But the physical implications are that I need to take more stuff with me. Which means not only packing it up and getting it there, but making room there in a way that does not affect my parents and does not do that spill-out-over-everything-and-multiply-while-I'm-sleeping thing that my stuff tends to do. So more to think about and more to do.

The visit to California is on for April, and that again means more to do. After much consideration and conversation with my parents and my son, I have decided that it is best for him to come with us. He is confused and concerned about my health, and has expressed interest in meeting my doctors and learning more about it. I also remember, from my own childhood, what it was like to be "left behind" when my parents went with my grandmother to deal with things related to her cancer. Soooooo because Santa Rosa is just outside San Fran, we are going to make a little vacation out of it. My aunt will be joining us, since she lives not-too-far, and that also means that there will be an extra adult around to take care of both of us.

From what I've read, the biggest challenge for me in terms of getting to the doctor without wiping myself out, is the airplane ride itself. I will have a wheelchair, earplugs and my trusty kobo at the airport, which should take care of most of my concerns there. But the airplane itself... air pressure changes, small seats that don't recline all that much, re-cirulated germ-filled air, and constant motion... oh boy. I'm going to do my best to sleep through it all. But from what I've seen online, most people don't have a real hard time of it - just a day or two to recover, if they weren't already in a state of PENE. Which means planning ahead, and doing really a whole lot of nothing this month, besides resetting my sleep patterns.

Sleep is hard for me. I've spent 30 odd years fighting unconsciousness. I need to know what is happening around me all the time. And I can't do that while I'm sleeping. So I find ways to convince my brain that I'm going to stay awake while tiring my body out to the point that I simply can't. So now I got some pretty royal blue rhomboids that are way smaller than I thought they would be, and I take one and within the hour my eyes literally won't stay open, and I can't hold a coherent thought, and that is that. But I only get two weeks worth of them. Apparently that is enough (according to the doctors that be) to reset my cycle. I'm doubtful, but willing to give it a shot. So the next two weeks, I am to go to bed at the same time as my boy, with my new candy and be asleep earlier than I have been since I was his age. And I know that, because I was his age when my Dad and I started fighting about my reading into the wee hours of the morning.

In the meantime, my Naturopath's response to all of these issues helped me see something I hadn't noticed before: she is very much a reactive person, who prefers the status quo, routine, and following a laid out general plan. Not so much, me. I am proactive, like to rock whatever boat I happen to be sitting in, hate routines, and believe in individual circumstance overriding general plans. So, after a very interesting conversation, during which I realized how much of my treatment was my idea, and how little adjusting she had done, and how much tooth-pulling I've been doing to get only bits and pieces of relevant information, I decided that she is no longer the health-professional I want leading me in this situation. She is an excellent naturopath, and is indeed very knowledgeable about my illness. But I need someone who is going to be more proactive and more thorough in supporting me. I feel like that is what I get from my Osteopath, and my family doctor. My Osteopath is looking at me as a whole, not just as an ME patient or a set of symptoms. My family doctor records everything, and helps where she can, but is honest and straight with me, that this illness is beyond her area of expertise. She is willing to let me bounce ideas off of her, and help me make knowledgeable decisions. I hope that Dr. Nathan out there in Cali can fill the medical void - that he can offer me a proactive plan of action based on my personal needs, as well as his broad knowledge of ME and other such mysterious illnesses.

It's funny, because I just had a conversation with my son's dad about how I see my healthcare team. To me, they are not experts who deserve automatic respect and awe and whose every instruction I ought to follow - they are a support system,and they are human, just like me. I hire them for their expertise in a particular area, as well as how we get along, and I assess continually their effectiveness within that area. I take their advice, and I run it through my own criteria, and I run it through the rest of the team, and then I act. Whether or not I follow their advice is predicated on a great many things, none of which is the fact that they have the letters "dr" in front of their name. I deal with them respectfully, and I expect the same in return. I think a lot of that comes from the fact that my teachers did not stand before me as power figures, but beside me as equals. But that's probably plenty of material for its own post, and I will explore this idea more fully later. When I haven't fried my brain writing as much as I already have.


  1. Wow, Andy! It always amazes me how well you can describe things and the way you're feeling and everything in writing. I have really enjoyed reading your blog!

    One of the things that stood out for me in this one, was the way you described your naturopath and her way of dealing (or not really dealing) the problems you're facing. I am going through the same thing and have been for the last few years. When I started seeing my naturopath for headaches and allergies, he was great...the last few years...I feel like I'm wasting my money! One part of my wants to leave him and see someone new, the other part of my wants to just stay with him because the thought of explaining all my health issues and everything that has happened over the last 5 years seems way to tiring to bother with. This all results in my not booking appointments with anyone...not a good thing! Just wondering if you are looking for a new naturopath, or if you feel content without that piece in the puzzle right now?

  2. Thanks, Jodi!
    It is hard to find someone who can offer the "right" kind of support for these kinds of ailments. And I do think that it is quite subjective - my parents still see the family doctor whose practice I left years ago because I didn't have the nerves to get her to really talk to me - but they love her, and she's a great doctor, just not for me. I don't find it an easy call to make, though - it's like firing someone - and I really did like her. Ah well.
    To answer your question, for now, I am going to wait and see what happens with Dr. Nathan, and then reasess, probably in another couple of months. But i the meantime, I think I'm good for now - my Osteopath is helping me balance out my supplements, and Dr. Nathan I'm sure will tweak as needed - one of the reasons I'm even going is because he has a holistic approach and works out of an integrative clinic. If I find I need one, or he recommends having a local ND, then I'll worry about it.

  3. Ack! Molds are definite a big NO-NO in the house! But thank goodness that you have a support system to help you through this difficult time. How are you now? Were you able to get back to your place? Mold infestation can cause a lot of damage to homes and properties. Aside from the health and emotional devastation, it can also lower the value of your property. If you are still in the process of resolving your mold and mildew issues, may be you can ask the remediation team for guidelines and tips to avoid this kind of problem in the future.

    1. Thank-you so much for your concern! It turns out that air quality testing is not all that reliable, and further examination led us to the conclusion that it was a false alarm. I also got tested, just in case, and there is no evidence of any kind of biotoxicity in my system. Thank goodness!