Saturday, July 25, 2009

Cushing's syndrome?

I was reading the directions for my 24 hour pee test, and it's a test for Cushing's Syndrome, which I never heard of.
According to Wikipedia, it's a "hormone (endocrine) disorder caused by high levels of cortisol (hypercortisolism) in the blood". Okay, I do have some kind of hormone thing going. How do you get it? By "taking glucocorticoid drugs, or by tumors that produce cortisol or adrenocorticotropic hormone (ACTH)." Ack! Tumor?! I don't have no stinkin' tumor, do I?
And when I read the symptoms, I wonder why in hell I'm being tested for this. I haven't got them. (I have changed to a bulleted list)

  • Rapid weight gain, particularly of the trunk and face with sparing of the limbs. [My upper arms and thighs are fat.]
  • Growth of fat pads along the collar bone and on the back of the neck  [my collar bones are not padded and neither is the back of my neck]
  • A round face often referred to as a "moon face". [I have visible cheekbones, not a moon face.]
  • Excess sweating [I sweat appropriately, when it is very hot and when I am exercising.]
  • Dilation of capillaries, thinning of the skin (which causes easy bruising and dryness, particularly the hands) and other mucous membranes [Only my edema leg bruises easily and my skin isn't dry]
  • Purple or red striae (the weight gain ...stretches the skin, which is thin and weakened, causing it to hemorrhage) on the trunk, buttocks, arms, legs or breasts [I don't exactly know what this is]
  • Proximal muscle weakness (hips, shoulders) [I am very strong]
  • Hirsutism (facial male-pattern hair growth) [I have a slight mustache which the Yale doc thinks is more Italian than anything hormonal]
I will do the stupid test, which requires me to collect every pee I do for 24 hours. But I don't have this.

26 vials of blood...

I went yesterday for my blood work.  My regular doctor had ordered a bunch of tests, and knowing how I have panic attacks when blood gets taken, she advised that I hold her tests and get them all at once.  The Yale doctors ordered more tests.   I think every endocrine/gland/hormone test possible was done on me, plus a few metabolic ones, and some advanced glucose tests.  All fasting of course, meaning I go in thirsty/dehydrated with even smaller veins than usual.
The Yale doc said that the blood would all be drawn through an IV and I'd be there two hours in a private room.  I brought along a friend for company and support, and also a laptop and some movies to watch during the 2 hours.
It wasn't anything like the Yale doc promised.  No IV.  Needle stick after needle stick, each more painful than the last, each taking longer to draw blood.  My friend said the initial draw was FOURTEEN vials.  Fourteen.  I was almost passed out by that point, thinking "It's only another 2 hours and another 3 sticks, right" because the glucose test is 1 ever half hour for 2 hours.  No.  First I had to drink a bottle of vile sugar water that pretended to be orange flavor, and I had to chug it, and not puke.  Then after half an hour, the every half hour sticks started.  And no, we weren't left in a private room.  We were sent back into the waiting room, so no movies for us (luckily we both brought books as well, plus my friend has a smart phone).
At some point, the veins in my right arm gave out and they switched to my left arm.  She didn't keep an exact count but she said some of the other sticks were for 2 vials and some for 3.  That's 8-12 more vials, or 22 to 26 vials of my blood.  By the end I was in a fetal position in tears, in so much pain I couldn't move either arm, my mouth coated with a foul film from the sugar water, so thirsty my eyes were crunchy, and then they started with the pee tests.  Who can pee when they haven't had a drink (except for foul sugar water) in over 12 hours and just had about 1/2 a gallon of their bodily fluids sucked out?  I couldn't.  They said "just a few drops" and I presented them with about a half inch in the bottom of the cup and they weren't happy.  I have a collection unit to get every drop of my pee that I produce in a 24 hour period (tomorrow a.m.to Monday a.m.) and the pee has to live IN THE FRIDGE.  My husband is MOST unhappy with that.
Obviously I couldn't go to the pool yesterday since I couldn't use my arms, so I went today.  I got kicked out after only 45 minutes (I needed 70 to make my 3500 calories) for a mama and baby water class.  While I was dressing I could hear the babies screaming. Apparently it was a mama drowns her babies class.
I tried to photograph my arms, but it's hard to do and the photos came out bad.  My husband is being a jerk and won't do it for me.   I look like a junkie, all red needle tracks surrounded by bruises in BOTH elbows.  My upper arms are lacerated from the tight rubber tubing lashed around it.
At this point, I'm almost wishing there is something seriously wrong with me to justify all the pain I am going through.  If these tests come back negative I think I will cry. 

Thursday, July 23, 2009

no PCOS

I spent all morning in New Haven at the Yale PCOS clinic.  I brought a huge pile of records from multiple doctors, and various test results.  I saw an OB-GYN who did one of those internal ultrasounds and confirmed what she thought from talking to me, looking at me and glancing through my records: I don't have PCOS.  But she didn't throw me out on my bottom; instead she said she was going to help me.  She had me immediately in to see the nutritionist and made an appointment for me to see the counselor and also arranged for me to go see Yale's gastric bypass surgeon Dr Bell.  I explained that I always already rejected for WLS but she seems to think that perhaps Yale wouldn't reject me.  (It was the nutritionist and shrink who rejected me last time, not the insurance company.)
I have two different papers for about 10 different blood draws that are scheduled for tomorrow, most of them hormonal in nature, because those people at Yale I've seen all seem to think my hormones are out of whack.
However they didn't suggest I stop taking the BC pills. I want off of them.  Next visit I'll ask about that.

Sunday, July 19, 2009

Kathy's story: a 3 year escape from Obesity

I was extremely disappointed in the 650-lb Virgin show (see previous 2 posts) so I am hoping that Kathy's Story: a 3 year Escape from Obesity will be better.
The show is interesting to me because Kathy Harris starts out at 350 (my max was 364, I'm down to 331 now), unable to walk without "gasping" and is shown taking handfuls of medicine.--a gallon bag of them--17 kinds a day.  I take a vitamin D pill and I can walk without gasping, although after about 20 minutes my knee hurts.  She is "unable to work due to her obesity."  She has a CPAP for sleep apnea.  I got rid of mine, it was stupid and didn't do anything to help.
One quote from the show that interests me is "As Kathy became bigger, her world became smaller" and that she was confined to her home due to her obesity.  Huh?  I weighed 14 lbs more than her and I worked full time and had (have) an active social life.
Her WLS doctor believes that once a person reaches that weight, surgery is the only way to lose weight.  I don't believe that.  I look at the guy on Sparkpeople who recently hit 200 lbs lost (and he didn't even join a gym, just walked!) and the 650 lb guy who's down to 220 from diet and exercise (and a bit of skin removal).   Both of them started out weighing way more than me (and than Kathy Harris) and did not get WLS.  There was a guy on Big Medicine the other day that lost several hundred pounds on his own and just came in to get his extra skin snipped off.  Okay, all 3 were men, but still--it can be done.  I have to believe it can be done, because I can't have WLS and I am so tired of being so fat.
10 million Americans (5% of the population) qualify for WLS:  100+ lbs overweight (morbidly obese) and unable to lose weight or keep it off by conventional means.  100,000 of them will have WLS this year.  
The type of WLS her doctor recommends is a biliopancreatic diversion with a duodenal switch. 75% of the stomach is removed, but the doctor says that within a year the 25% remaining has stretched back out to full size.  Above is an illustration of how that version of WLS works, although the show did not say her gallbladder was removed.  Supposedly it's got the best weight loss rate of any type of WLS--80% of excess weight, instead of the 50% of the excess weight lost with other WLS types.
She lost 71 lbs in the first 9 weeks (33 lbs in the first 2 weeks--took me 6 months to lose that this year.  I feel discouraged.)  6 months out, she was down 110 lbs.  After 3 years, she got reconstructive plastic surgery--arms, thighs, middle (11 lbs total).  
I found a posting from her on the Obesity Help website saying she is now staying around 155 (her surgery was March 17, 2003).  My goal weight is 150 (BMI of 24.9).  So we start out similar (weight-wise) and have a similar goal.  I am taking a very different road though.

(image source)

Sunday, July 12, 2009

650-lb virgin part 2

Watched the 650-lb Virgin show.  Disappointing.  The whole thing was filmed when he was thin.  Some old family photos and videos, but mostly him telling stories.  And due to a life lived behind a huge cloud of fat (including dropping out of school) and without much social contact, David Smith is not very articulate.
Basically the focus of the show is him trying to get a date, not a subject that is interesting to me, and him worrying about how much he doesn't know about women.
And of course a listing of all his (free) plastic surgeries--whole body lift (he needed one!), some kind of work on his face, laser eye correction and new teeth. The most interesting thing was that his trainer realized David had never had a friend, and decided to be a friend as well as a trainer, and now they live together and David is a personal trainer too.
If I rated these shows, I wouldn't give this one a very high score.  I kept eying my book and wishing I was reading it instead.  Glad it was on DVR and at least I didn't have to sit through all the ads.

Saturday, July 11, 2009

650 lb virgin (part 1)

Tomorrow night there is going to be a TLC special on this guy--added to my DVR list as soon as I can gain control of the TV from my hubby--but in the meantime, here's an article about him.
650-lb David Smith lost over 400 lbs in 26 months without surgery. That's 3-4 lbs a week.  No where near Biggest Loser numbers, and probably very doable.  I've lost 4 lbs in a week.
He wanted to commit suicide by filling a kiddy pool with gasoline and burning himself to death.  That's pretty extreme.  Instead, he contacted a local celebrity "health and fitness guru" and asked for help.   Smith lost 410 lbs and has had more than 30 lbs of loose skin removed via surgery, and he's now a personal trainer.
I can't wait to watch.
650 lb virgin
screenprint of original