Monday, October 31, 2011

Let's talk about type 1 diabetes...I'm growing bored with my stupid stomach issues

I'm taking a day off work today. Firstly, it's Halloween. Secondly, I still don't have my full energy and digestive capabilities to 100%. Thirdly, I have to work at a conference all next weekend. Lastly, I've accrued so much vacation that I can't accrue anymore unless I use it more often - so I may try taking every other Friday off or something like that for a little while.

Type 1 diabetes - this is the kind where injecting insulin is not optional.  About 32 years ago, some unknown trigger pulled a fast one on my immune system and tricked it into thinking my pancreatic beta-cells were foreign imperialists who should be crushed by a rebel alliance. Since my understanding of immunology is still embarrassingly slim, I'll go for the dramatic version of the story. Given I've been around smart immunologists for a couple of decades, you'd think something would have seeped in by osmosis. I guess knowledge rarely gets in that way.

I had all the classic symptoms - weight loss, excessive thirst, had to pee all the time, etc. When my friends refused to ski with me at ski club because I had to go back to the lodge and pee after every run, I finally mentioned something to my parents.  Since my hair was also falling out, I did a little research and narrowed the horrible self-diagnoses to either cancer or diabetes.  Sometimes I can't believe how dumb I was as a kid. But now that I think of my extremely sensitive and bright children I realize that even the smartest teen is still kinda dumb.

blah blah blah - a blur of tests and a stay at Good Sam in Portland at the diabetes treatment unit, and they cut me loose with my urine testing tablets, and my strict regimented diet and exercise plan. None of which I was very successful at (that sentence looks wrong, but I'll fix it when I get a publisher - hahahahaha!). But neither was I planning to let this ruin my plans for a BIG life. heh. sorta dumb again, but then again maybe this last attitude has saved me from my blundering diabetic habits.

Anyway, over the next 10 years I learned about glucose monitoring, and still struggled with controlling diabetes until my awesome endocrinologist (Dr. Hohl, probably long retired) convinced me that my perfectionistic tendencies were sabotaging my efforts and wouldn't I consider seeing a shrink friend of his who also happens to have diabetes.

Here's what I remember thinking "okay Dr. Hohl - first of all we in my family do not believe in shrinks. We either pull ourselves up by our bootstraps or just tolerate being insane and drive our loved ones into the brink of despair along the way.  Or some complex combination of that more typically." Then I thought "why do people keep accusing me of being a perfectionist? I NEVER do anything perfectly!!"

And then I thought "I don't want to make up the bG numbers in my log book anymore to appear perfect and this guy isn't fooled anyway (at 22 you do start to get a tiny bit smarter. but only a tad), and I'm so unhappy." So I gave it a try.  The guys name was Tony Something, and he did testing on me and proclaimed me to have something called "Anxiety response" and "Obsessive Compulsive Personality Disorder" which I guess is like OCD lite.  OCD lite can make you a better scientist though if you can keep the OCD Personality in check. That's what the shrink told me anyway, and I choose to believe it.  All those lists and careful double checking of everything can make your experiments much more reproducible.

My HbA1C (the portion of your hemoglobin that is glycosylated, meaning there's sugar attached to it and if you have lots more sugar in your blood than you should have then you get way more glycosylated hemoglobin than you should have) dropped from 13.9% (shockingly, scary high) to about 5.9% (brilliant figure that I aspire to someday reach again) in less than 6 months.  Dr. Hohl was so excited he wrote this funny note on my lab report with a huge smiley face and an overabundance of explanation points. Who has a doctor who does that kind of thing?  He was the best.

That experiment with the shrink taught me several valuable lessons. But the diabetes related ones were 1) my emotional well-being is tightly linked to glucose control. I don't really remember making any big drastic changes to my diet and exercise, though I'm sure I did - when you feel better you just do better things for yourself and make better choices. 2) the numbers on my glucose meter were just information to help me - they weren't 4-6 chances a day to remind myself what a crappy failure of a person I was because they weren't "good" numbers.  Although I still do a little happy dance inside when the numbers do look good for a whole day. and 3) going to a shrink, if it is a good shrink (and that's quite a caveat), is a good thing and I do not care if my family thinks I am weak for going to get some help keeping my perspective.

Sidebar on getting professional emotional support: At first I justified this with the whole "I have more to deal with so how many fucking bootstraps do I have to be pulling up all the time? Geez!"  And then there was the fact that I realized I don't want to be a crazy person.  I already have the tendencies and sometimes a crazy person does walk out of my bedroom door and into the world for a day or a week. But I always slap her silly face and tell her to "snap out of it"!  And over the years there have been a couple of tragedies and traumas that seem to have permanently changed my brain so that I need to be more vigilant about when I'm slipping down the slope.  I also gave up on the idea that anti-depressants are for weenies without any bootstraps. If your brain needs a boost to get back in working order, by all means give it some way to re-balance as quickly as possible.  If all that makes me a weaker person, well you wouldn't be able to tell by looking at me. Ha! and  remember "It's not how you feel, it's how you look.  And you look Mah-velous!"

Okay, back to diabetes. The last time I was in super tight control was during pregnancy. With Teen Wonder, I tested my bG 12 times a day and took as many injections as I had to in order to keep things as tight as possible.  My HbA1C got down to something like 4.7% - I also lost the ability to feel when I was getting hypoglycemic, so there does have to be a balance. For the past few years I've been sort of on autopilot - not doing terrible, not doing great. HbA1C range from 7.2% to as high as 8%. Right now about 7.6% I think, though I haven't been testing for several months (bad diabetic! don't do this at home!). I've been using an insulin pump for about 10 years now - it makes travel easier, and I don't have as many dangerous low blood sugars at night; however, it did not transform me into a better diabetic.

Since everything that can go wrong for anyone medically gets worse and more complicated if you have diabetes, it makes sense to attach this head on right now.  I had a great visit with the Diabetes Angel/Educator last week and she started with some simple stuff:

  • get 10 minutes of activity after every meal. I don't have a regular exercise routine at the moment and this would start something - plus doing it right after a meal is a small time commitment and will help with the glucose level spiking after eating.
  • add some protein to my breakfast. She suggested nuts, and then I said I used to do that but I was afraid they were making me fat. As soon as I said it, it sounded ridiculous - right? A few almonds on my high-fiber cereal? sheesh...I'll get to weight issues another time.
  • reconnect with my girlfriends. I am such a terrible friend! Actually I'm a good friend in many ways, but I am neglectful of nurturing those relationships. And it's not good for me.
That was really it - we talked about CGM (continuous glucose monitoring) which I started up again last week so that I can get more data to tie in with my food and the normal circadian rhythms of metabolism. I did the download of my overbusy stressful life, and cried a lot for no apparent reason other than just releasing some of that anxiety out of my body. We talked about peri-menopause and the challenge that is starting to pose with the random hormone levels which affect insulin resistence, mood, ability to tell if you are sweating due to low blood sugar or is this a hot flash? All that fun stuff.  We talked about getting more accurate carb counting incorporated into my insulin bolus decisions - so dig out those books and such...

But I'm feeling more in control already, and hopeful about hooking up with someone pragmatic and supportive who can help shepherd in my blood sugars to a goal of first 7% A1C, then if I'm not getting too many hypoglycemic episodes, we'll go for 6.5% - I guess as close to 6% as possible without having too many low blood sugars because the dangers of the lows are not worth the extra tightness in control. 

I'll have my new endocrinologist team member in December, and by then I'll have a good idea where my gaps still are - it's always nice to show up to a new doctor for the first time when you don't feel like crap. That hardly ever happens.

Saturday, October 29, 2011

Chapter 2: Building your Medical Team

Here is the deal - I need a support group of doctors, experts, and also loved ones to get back on track and stay there.  Let's start with the basic core medical team:

  • Internal Medicine - the doc you see for regular checkups, when you have some infection or other illness, the one who writes most if not all you prescriptions, and gets copied on stuff from the specialists.  I have a relatively new IM doc because my last one moved away/retired. Before that my endocrinologist was also my IM doc, but he cut that part out of his practice several years ago to focus on endo stuff.  My IM is quite young, sits in the exam room with a laptop taking notes rather than on a chart, and I think that I like her pretty well.  And she's on-board with this team approach. So I can check this position as filled.
  • Endocrinologist - if you have type 1 diabetes you need an endocrinologist to manage that specific complex part of your medical needs.  I've had the same guy for something like 25 years. I really like him as a person, but we need a divorce.  He's probably going to retire at some point anyway, he doesn't know my new IM doc, and he definitely does everything on paper in my file that is so thick that his staff get carpal tunnel carrying it around.  I have an appointment set up with a new Endocrinologist who is in the same practice as my IM.  I hope I like her.
  • OB/Gyn - if you are a girl, you need one of these to deal with all your girlie things.  I'm really happy with the one I have but as I'm getting older and facing peri-menopause it will be important to loop her up with my IM too.
  • Dentist - duh. We all need them.
Next level are the specialists who I hope I only need to see once in awhile:
  • Gastroenterologist - as you can see in my last post, I need one of these. I have an appointment set up with a guy down the hall from my IM and new Endo.  I hope I like him.
  • Diabetes Educator - I think if you have diabetes, you should spend some time with one of these people in addition to your endocrinologist.  In my experience they are more sensitive to the fact that diabetes is challenging and it's hard to be perfect all the time. I already have started going (again) to the Diabetes Ed center at Alta Bates. I love them there.  Mr. Wonderful calls them the "Diabetes Angels".  I was there yesterday and it's still true. But I'll save the specifics on that for another post.
  • Hand Specialist - this one I need to get soon. I've been working on it but I want a specific, fairly conservative approach to my Dupuytren's.  Anyway, this is critical to take care of ASAP.
  • Optometrist/Ophthalmologist - if you have type 1 diabetes, you need to be checked annually for any retinopathy. Plus I'm getting old and need my progressive lenses updated once in awhile.  I'm happy with the one I have.
  • Pulmonary specialist - just to check on my sarcoid once in awhile to make sure it isn't scarring up even more of my lung and bronchial passages. meh. I don't even remember who I saw last time, but my sarcoid appears to be inactive at the moment so we'll just leave that for the moment.
  • Dermatologist - I haven't been to one yet, but I'm fair skinned and spotty so should probably get a once over for any possible skin malignancies.  Maybe I can get something done about my spotty old face too (heh).
What about the non-medical people in your life?  I have great support from Mr. Wonderful and Teen Wonder, though when I am not well it puts a huge strain on the family eco-system.  The other day I lamented that Mr. Wonderful and Wild Thing were supposed to put up the Halloween decorations I'd dragged out of storage and bought from the Halloween store.  Teen Wonder remarked "I don't know why you're surprised. We can't do anything without you."  That's an over exaggeration (teens!) - but probably partly true.  My mom is great too - she'll fly down in a moment's notice if needed, and has more than once starting with when Teen Wonder was born 6.5 weeks early.

One of the instructions from my Diabetes Angel yesterday was to reconnect with my girlfriends. I have 2-3 really good ones but I haven't been keeping up with them and I need to fix that.

Anything I've forgotten for a critical team?  I'm sure I'll think of others...

When you are a scientist, you probably self-diagnose too much. But...

As I'm a curious person in search of answers, I may have to add another diagnosis to my list - pending a visit with a new gastroenteroloist next month.  It's called "Cyclic Vomiting Syndrome" - used to be considered only a pediatric problem, but now increasingly, adults are being diagnosed as well.  Since I have some gastroparesis, it may be that I'll never get diagnosed with this particular title.  But it is extremely interesting to me that this syndrome is tightly linked with migraine.

Here is one of the more informative links:
And here's the first thing they say:

What is cyclic vomiting syndrome (CVS)?

CVS is characterized by episodes or cycles of severe nausea and vomiting that last for hours, or even days, that alternate with intervals with no symptoms. Although originally thought to be a pediatric disease, CVS occurs in all age groups. Medical researchers believe CVS and migraine headaches are related (see CVS and Migraine).

I also get migraines, and when I was in grad school I suffered from cluster headaches seasonally for about 3 years. They stopped after I had Teen Wonder, which was something the headache specialist said may happen since those headaches appear to be related to hormones (happen mostly in men...)

My mom gets migraines too.  Did you even know there was such a thing as a stomach migraine?  I didn't.  

What can trigger these episodes?  Well it varies...

What triggers CVS?

Many people can identify a specific condition or event that triggered an episode, such as an infection. Common triggers in children include emotional stress and excitement. Anxiety and panic attacks are more common triggers in adults. Colds, allergies, sinus problems, and the flu can also set off episodes in some people.
Other reported triggers include eating certain foods such as chocolate or cheese, eating too much, or eating just before going to bed. Hot weather, physical exhaustion, menstruation, and motion sickness can also trigger episodes.
 But I can tell you that I respond well to Ativan (anti-anxiety) when I start to feel like I might be getting nauseous. This last time I had a fever the day before it happened so maybe viral something or other. And the one in December was preceded by a late night of cheese fondue and white wine overindulgence. 
I've had shorter episodes many times from over exhaustion (lack of sleep, often due to jet lag), motion sickness, and also really bad headaches.
Anyway, the good news is that treatment and prevention that are recommended are the things I'm doing now. But sometimes an anti-migraine prophylactic medication can also help - not sure what those are but I will ask my new doctor about it. 

Monday, October 24, 2011

There will be celebration breaks in Janet's Self Help Book

The weekend was a little grueling. Not really a wise move after my extended illness. Mother would not have approved.  But Teen Wonder was admitted to Humboldt State on Early Admission Day,and it was a fun day - for her back up school it is still a good fit for her.  It's a 6 hour drive away, so we flew on miles and rented a car. It's hard to drive on some of these stomach meds so I had to wing it a bit. We're home safe.

She's happy.

I felt the sunshine on my cheek this afternoon and stopped to just breath and enjoy the moment of peace. A real feeling of peace no matter how short.

I let tears come over me on my pillow next.Just tears of release. nothing more

Friday, October 21, 2011

Chapter 1: Taking Stock

Hehe. I envy you simple people with only 2-4 maladies and specialists to deal with. Just kidding - there are so many people with bigger problems than me I shouldn't even joke about it. 

I do have a laundry list though - ancient history ones not included!  I suppose if you don’t have many challenges of this sort to work with , then this blog won’t be of interest to you (yet).

Let’s start with known my own diagnoses and current status

Current status
Control Fair
Insulin pump
Good control
Pretty good
Not good
Zofran, Ativan, Erythromycin
Not good
None so far
Chronic Sarcoid
None so far
Hashimoto’s Thyroiditis
None so far

Don’t worry, if I forget any, they’ll come up I’m sure.

You may think that a list of symptoms is where I’ll go next, but I’m sick of sticking bandaids on symptoms, so I’m going instead to make an attempt at the entire me. Which means more than a list of inter-related maladies.
And I didn’t even count the basic age (and vanity) ones I’d like to ultimately include – because it is too easy to start there and not dig deeper from my experience.  Perfect example? Lose some weight OR exercise regularlarly OR control bG, but to do all at once seems impossible. This can not be impossible people!! (phew) But it is an overwhelming amount of work when you’ve got a full time job and 2 kids. That’s a given.  We WILL get back to age and vanity later.  But just for the completeness of taking stock here are the vanities.

Slightly over
Trending to worse
Weight watchers
Out of shape
Ad hoc spasticitiy
Skin (might have to bump up to medical category due to risk)
Spotty, saggy
Who knows
Expensive creams and lotions!

Other conspicuous absence?  Depending on you practices or faith (or both or neither), I haven’t included the spiritual and emotional side of the self-help work needed by moi.  Probably I should deal with that before age and vanity, but I guess it all depends how you look at it. Many would say that we start here and work from that place. I won't argue with enlightened people, because what do I know?  But for me, I'm still smarting from some specific times when I felt alone and no answer from the wilderness - I need to prepare myself better first.  On the other hand, I feel like CS Lewis in that I still pray all the time because I have no other choice. I'm helpless. I know it won't change God.

aherm moving along to something no quite so depthly, here is my initial stocklist for this area.
Grounded Sense of Self
Not good
None so far
Spiritual Connection
CEC, prayer
Community Connection
Volunteer, interact

And what have I don't all day besides continue to be half=well after a grueling stomach "evil time"? I've made an appointment to get my teeth cleaned. YES I HAVE!  And with a new Endocrinologist, may my old own RIP with his paper filing system and "quirky" office staff - I will miss him, after all it's been 25 year relationship. But I'll get over it quickly because I'm fickle like that. And Emailed photos of my clawed Dupuytren's hand to a hand specialist, and left messages for a gastroenterologist (say that 3 times fast!) and another message for the Diabetes Angels - god I hope they haven't all taken different jobs in the 10 years since I was last there!

And next for today? ANOTHER BLOG POST! but this one on my normal light and crafty blog. just a slight resuscitation to keep it at least alive...

After that, I am showering, getting dressed and going for a little walk in the open air. Maybe just to the corner to get a tea - but something anyway.


Coming to the end of yet another bout of gastrointestinal ugliness lasting over a week, it’s time to take stock.  I’ve been pushing too hard for too long, both physically and emotionally and I am slowly killing myself.  For so long now, diabetes has been playing second or 3rd or even 4th fiddle to so many other pressing concerns. Job, travel for job, Teen Wonder, Wild Thing – such beautiful sensitive children, and they need their mom real-time. Mu Wonderful? Even he takes precedence over my heath because without him sometimes feel I would wither like a dead flower anyway. That’s a pretty lost and dependence feeling. That doesn’t feel like me at all.

My hobbies (see other blog) are crammed in there and the little time I have for them serves as a respite for me. But even there the priorities aren't right. I need to take care of my body in a more holistic way. I've told a couple of only my closest friends (because who else would care) how detached I can become from my body especially during a long illness like this, but even just day to day so that I can "BE" the role I want for that day rather than the diabetic, health-challenge person pretending to be that role.  I still test my blood sugars, make adjustments to insulin, take pills on time, etc. But it is all on autopilot and not with any presence of mind to stop and think - "hey, these numbers really stink last couple of days! What should I do?".  And when it comes to my stomach I'm always on triage mode when I could be more proactive more often.

What to do? Quit my job? Well, let's just stop for a moment to note that we couldn't pay our mortgage without my job, so  whole lof of other problems arise from this line of thinking.  BUT! Would that really be what makes a difference and magically fix everthing? Maybe with all the time I’d have I could really monitor sugars the way I should, exercise each day, not self-medicate at night with another glass of wine. Sure. But that isn’t the life I have. I love my family and need to work with more discipline in the time constraints I do have.

And with some kindness to myself. With is normally lacking.

Oh and a personal assistant, trainer, and chef would be fabulous while we're asking for miracles.  But then we are back to the money thing

This blog is a lot more personal than I've ever been comfortable with. Hopefully I'll walk the line just this side of TMI because I know it can get tricky. I am not going to get into my complex medical history here unless a lot of people keep asking the same questions. (all, um, zero of you)

Also, I'm trying to organize a real approach to how a person without Kaiser insurance who has a lot of different special needs can build a team - a network of medical competencies (either the people themselves, or the information organization). We are facing similar issues trying to pull together a team to help Wild Thing do his best, and it's been pretty painful on our own.  Is it possible to make a roadmap? a personal "Self-help book"?