Keep Calm and Carry On!

HAWMC writing prompt #9

The HAWMC gives you two get out of blogging free" days during the month. We had over 20 people in our house yesterday for Easter dinner, so I just didn't have any time to write a post!

For the HAWMC prompt today we got the chance to create our own "Keep Calm and Carry On" posters.  Here are the three I came up with about diabetes, and a cryptic one for gastroparesis (since Soup is good for many many ailments!)

Which is your favorite? Leave me a comment and let me know!

This is so much fun too - if you want to create your own KEEP CALM poster, go to the Keep Calm-o-matic website!

Chapter 5: In which Janet is just one step removed from a lab rat

Boy, it's been awhile since I've posted. I am happy to report that I'm feeling better. Not 100%, but back in rebuilding mode.  I have a lot of ideas I could write about, but today I'll tell you about a clinical trial I signed up for.

The GI doctor at Stanford is good. She slapped me into the hospital on the spot when I went for my first office visit. I got stabilized, and pumped full of electrolytes and fluids. I was there for 5 days, getting out just in the nick of time*. Anyway, they also did some tests, like 4 different blood draws, an endoscopy, and a stomach emptying study that involves eating radioactive scrambled eggs and then getting scanned every hour for 4 hours.

No surprises really. I had some shallow ulcers in my stomach, likely from being sick so often and over a long period of time.  So I'm on Prilosec to manage the acid. I'm still off coffee and alcohol and spicy foods too, so I plan to let my tummy heal up thoroughly before I jump into my vices again.

Also no surprise that my stomach didn't empty very fast. I've had intermittent gastroparesis (what they call it when your stomach doesn't empty) for over 10 years. But usually mild and I really haven't had to make any permanent lifestyle or eating habit changes over the years. Well, the plumbing has been pretty much backed up to a standstill over these 3 months or so.

According to the GI, there are a lot of overlaps between gastroparesis and cyclic vomiting syndrome (CVS).  I'm taking a drug to prevent migraines which will hopefully remove at least one trigger for a CVS episode.  Otherwise, the treatments are more of less the same in terms of anti-nausea and anti-emetic drugs.

Currently, we are mostly addressing the gastroparesis - although there aren't really good treatment options out there. I react badly to the most common treatment, Reglan. I took some antibiotic that promotes motility in the stomach, but it only works for 2-3 weeks.  I'm using Iberogast - a tonic that has a bunch of different herb extracts in it - it does seem to help. And digestive enzymes from Trader Joes.  And Dr. Who is also addressing gastroparesis and general digestion with acupuncture and Chinese herbal formulas (which taste nasty if you ask me).

Are you bored yet? Wondering where the hell the lab rat is?

WARNING: This content contains science geek information that may or may not confuse or interest you. 

I signed on for a pilot clinical trial at Stanford for a different/new drug to treat gastroparesis. I don't say "new" because the drug already is approved for treating phenylketonurics (PKU). It is a co-factor for an enzyme that can lower Phenylalanine levels in PKU patients.

This drug is also a co-factor for nitric oxide synthases (NOS) - and without getting too scientifically confusing, let's just say that NOS abnormalities are found in gastroparesis - the NO is needed for the action of the smooth muscle in your stomach.

Gastroparesis is also more common in diabetic women, and there is a gender difference in the NOS malfunction. In lab rats. (oh, that figures, right?)

So, I signed up for a pilot study to test the drug in humans. Are you as excited as I am?!  Seriously, this will at least make things interesting for me.  It was really strange being on the other end of an informed consent after working from the diagnostics and pharma clinical trial side.  They are recruiting 20 diabetic women who've had diabetes for at least 5 years and have moderate to severe gastroparesis.  I think I am #7.  I have to get a couple more screening tests and then I'll start taking the drug on Feb 3rd.

I guess it's a little crazy to sign up for a trial like this when the side effects include headache, nausea, and vomiting.  But those things happen in the minority of subjects, so I'm keeping my fingers crossed that I won't have any side effects that would cause me to withdraw from the trial.

*We went up to the NW to visit colleges for Teen Wonder and family over MLK weekend. I had made most of the arrangements, but Mr. Wonderful was left holding the bag to find the hotels and possibly take both kids on this trip to Seattle and Portland (and Olympia where Evergreen College is and where Teen Wonder will likely go next fall). So I was released on Wednesday afternoon and Thursday morning we all got on a plane to Seattle. I took a lot of drugs over the weekend...

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.
sheesh.

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: http://digestive.niddk.nih.gov/ddiseases/pubs/cvs/
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. 

Introduction:

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 3^rd or even 4^th 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 again...boo

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"?