Saturday, November 19, 2011

Hallucinations, no matter how well meaning, do not qualify as Self Help

Well, THAT title is sure misleading! Because I got bored with my hallucinations and have moved on several times over since then.

However, I will say that for a control freak, hallucinations are right up there with whatever drugs they try to sedate you with when putting you under - NOT RELAXING ME.  Especially worse when your loved ones tell you that you were going off about too many layers of meat on your bed and how your new boots were stolen, and if we could just get through that last layer of sleep there's something special - a prize? I just don't know. I never got there.

But hey, there is more Self Help on the way! Because my trip to Dr. Say Nothing, the gastroenterologist was beyond disapointing. I need to see a "super-specialist" I guess.  And let me guess what else - are there like only one of these magical people in the entire world Bay Area?  And let me guess what else? Would their first availability be sometime after monkeys fly out of my butt? February? earliest?

Yeah.  So, what does any self respecting over-educated Ph.D. do at a time like this? Search the internet!! (duh).  I have made an appointment with an acupuncturist here in Alameda who seems to have a cult-like following - and this put me off and I almost went with the nice lady (I assume shes nice) who is actually partially covered by my insurance. But then I realized the amount of money the insurance company was going to reimburse were fairly small so I went for the Acupuncturist with a capital A and a radio show and 72 Yelp reviews, all positive, and half a dozen recommendations on Berkeley Parents Network. He also has a lot of policies and his staff want to be sure you know it is expensive right up front. So I'm nervous. But I'm going.  If it is too cult-y for me I can always go to plan B - the nice lady with better rates and coverage.

I also researched my herbal and supplement options and ordered/bought some expensive stuff to try.  Actually one is like an old friend - I can't wait until I get my bottle. "Iberogast" - an herbal concoction I used for my  tummy years ago that really seemed to help. But they didn't sell it at the local health food store. Oh well.

Parting rant:
Gastroparesis - a problem I know pretty well. I know the symptoms, what makes it worse (sometimes) - it flares, it goes.  It does NOT cause bouts of uncontrolled vomiting 4-12 times per hour for a week following a pretty predictable cycle. Period.  Dr. Say Nothing just didn't seem to get this. When I asked this so called specialist was it GP when I had pregnancy induced hyperemesis, he said OOOH NO - that is something entirely different!  Still I couldn't get a lightbulb to go on for the concept of a hormonal or migraine like problem lately even though I do have some gastroparesis.

It happens all the time. If you have (insert chronic disease here, in my case diabetes), then the most logical choice for a doctor is to pin your new problem squarely onto that old problem.  I believe in parsimony, but I believe more strongly that a diagnostician should be thinking about all the cards on the table and turning them over one at a time. Not just looking at the same 2 or 3 and trying to make new hands out of them when it just doesn't make sense anymore.

Saturday, November 5, 2011

Is there really such a thing as "self-help"?

Well, of course there is. But I've had at least 3 conversations in the past week that touched on why we need help. From OTHER PEOPLE.

Like your family. Your husband, your daughter, your mom, your sister. (even Wild Thing in his own way). These are all people who truly madly deeply love and care for me. And they are all smart, and sensitive, and complex all in different ways. And they've known me a long time - especially probably my sister who I let see all my sides pretty early on. My mom has been a rock for me since I let her into my life after Grace was born. Before that, I didn't really think we had that much in common and she seemed mysterious to me. What a shock to learn over the past 17 years how much like my mom I am.  I remember when I was like, 10, or 15, thinking I was more like my dad - volatile, moody, kinda a cry-baby (sorry dad if you are reading this but it's sort of true you have to admit...maybe "sap" is more fair to both of us).  But that is 100% incorrect. Of course, I'm my own complex individual, not some clone of my mother - I'm just saying  Kind of another way where we are dumb about things as youngsters, and for some of us, painfully lacking in self-awareness.  Late bloomers is what my mom and I have in common in that sense.  Anyway, I am also blessed to have more extended family who are so supportive of me (like the nicest mother-in-law anyone could ask for and all my in-law relatives in Mr. Wonderful's family for that matter - I guess that's how he turned out practically perfect in every way. minus the magic carpet bag. And the boobs...), and cousins and aunts and on and on...

And of course most people accept help from their medical core team - since we are talking about Self Help primarily from the health side of things. However, I happen to be a very bad patient - argumentative, always coming in with obnoxious questions based on things I read in Science News, or worse ON THE INTERNET!  I question everything, every test, every new medication, why do you need to put in a 3rd IV when I already have 2 - can't you combine up some of that tubing somewhere!?  I'm a pain in the ASS for these fine medical professionals.

Anyway, I had this same conversation with Lynn the diabetes educator on Friday at my appointment.  And I explained to her how much more I let myself rely on others for support than I did, say, 15 or 20 years ago.  There's a wisdom category I'm glad to have accrued some stock in over the years.

btw - I had a successful couple of weeks re tuning my diabetes care regimen. Little things, like tweaking the basal rates of insulin my pump spits out, and the revelation that I don't have to limit these adjustments due to my frequent travels. DUH! My pump can store additional profiles, like one specifically for travel that I can switch to. Now why did I never think of this obvious thing myself? Well, sometimes we just need some supportive person to gently tweeze that kind of solution out of us. Lynn didn't know that my pump could do that actually, but if I hadn't been brainstorming with her I never would have. wow. Anyway, my software for data dumping and reporting all my blood sugar and insulin info spit out these 2-week reports and I made the last 2-week report for Lynn as well as the report for the preceding 2 weeks. There are these little pie charts showing how many of your sugars are above "range" (i.e. over 140 mg/dl), how many are below (lower than 65 mg/dl), and how many are in range.  So just 2 weeks of continuous glucose monitoring and me making this a higher priority resulted in an old pie chart that was something like 90% yellow (over range), 2% red (below), and less than 10% in range.  Now, I do test a lot, including post-meals which are rarely under 140 and that's okay.  BUT come on - really? 90% over?  Guess what the new one looked like? close to 50% "in range", and 45% over range. I had a couple more that's where the balance comes in at some point. Get as tight as you can without too many of those hypoglycemic episodes. They are a little scary. I've never actually passed out or anything, but I have gotten lightheaded with sort of black spotty vision which is very close ( I know from fainting a couple of other times).  Anyway, that was worth a little happy dance - progress that is right there in the data - my favorite kind!

Back to your support network - And lastly my friends - the ones who aren't my family (for they surely count). I have such a fabulous range of different friends, and as I said in my previous post (or was it 2 back?) - I need to get into the habit again of reaching out to them. Going for coffee, going for lunch, talking on the phone, going for walks together.  I haven't been doing enough of that AT ALL. I was visiting with a good friend who is here from out of town for the AASLD (Liver) conference (hey, it's my job - I know it sounds goofy to go to a Liver conference).  He was pretty much lecturing me on not being so hard on myself, being more optimistic about the future where in his mind there will be a CURE for diabetes, and that I have this great life and my health is not so bad.

And he's right. My health is still manageable - nothing that is threatening my life in an imminent manner. I am lucky. I haven't had to add an Oncologist to my team yet, or a Cardiologist...

And I have a great marriage (11 years yesterday - yay), and these two intelligent, sensitive, complex children who are growing into the most interesting people you'd ever want to know. I have a good job that I still find interesting (most of the time).

But about this CURE for diabetes, we did have an argument about that one. I care so much more about a possible prevention for young people at risk for diabetes - have autoantibodies, but at this point there is absolutely nothing you can do to prevent type 1 from striking.  Type 2 probably needs even more attention, since it's becoming such an epidemic...but a cure for an old diabetic like me is less important than taking care of what I've got with the best tools available. If I ever do get cured, I'd like all my parts to still be in working order more or less!

In short, self-help is the cornerstone - no one else can do this for you. But you can't do it alone. Well, I can't anyway. There is a level of stoicism that I notice I also picked up from my amazing mother - it can serve you well as long as you know when to lower your shield.

wishing you all good health and long life!