Monday, December 28, 2009

Waiting for Godot, I mean surgery date

I've got one of those migraines of major doom.  It started yesterday.  It responded to Maxalt for some time but then returned.  After three Maxalts I realized it would just keep boomeranging.  I then took hydromorphone for the pain, as I am instructed to do.  With my liver pain and liver enzymes elevated I didn't want to try Vicodin first as I usually do, since the liver doesn't care for the acetaminophen in Vicodin.  People forget how hepatotoxic Tylenol can be...

I'm trying very hard not to take anything narcotic today because I really need to go to the post office to pay for my support group's PO box before year-end, pay a bill at the bank, and get some food that I can eat without totally spitting on one of my medical diets.  But I haven't had a break in the migraine action long enough to feel safe driving even sans pain meds.  I've been getting vertigo along with the nightmare pain.  This thing basically has got to go.

Anyway.  When asking about my preop appt. I found out my surgery is going to have to be pushed back due to a change in the doctor's schedule.  So I no longer know my surgery date.  I will still have tests in LA on the 2nd.  I know the surgery will be at the very least a total hysterectomy with ovaries et. al. removed.  I'm hoping it can be done laparoscopically due to my poor wound healing from immunosuppressive treatment for lupus as well as the diabetes.  The tests on the 2nd will have some bearing on whether this is possible.

I really want to be held and kissed and comforted.  But I've always been really stoic, at least on the outside, and I don't know if people really know that inside I'm an emotional vulnerable lonely gullible soft thing.

On the outside I can joke about adversity (having become somewhat used to it) and kick ass when I have to (an outer personality change that was painful and took a very long time but was totally necessary for survival starting with fighting for the diagnosis of my mystery disease, not hypochondria but: lupus.)

I didn't realize I had quite so many of the risk factors for this endometrial cancer of the uterus.  I knew I was high-risk but not, I guess, megahigh risk!  It all has to do with how much exposure to estrogen one has.

My collection of the risk factors include:  starting my periods before age 12, never having been pregnant, irregular or possibly even no ovulation after starting Cell Cept for lupus treatment in 1997, diabetes, obesity (thank you so much, prednisone.  Oh yes, you are life-saving in lupus, but you come with quite a price in side effects), possible PCOS .

I'm really glad my new gynecologist did a biopsy of the uterus instead of relying on my normal PAP smear.  PAP is for cancer of the cervix, not the endometrium of the uterus.

Why won't this migraine GO AWAY?  I need to do laundry and answer a backlog of email.  This is so frustrating.  Vamoose, migraine!  Abracadabra!

Wednesday, December 16, 2009

No, I wouldn't say this was the best day I've ever had

It has been kind of one of those days which started a bit icky and then worked its way up to kind of a grande finale of yuk.

I woke up too early because an alarm clock went off too early.  And when I don't get enough sleep I do not feel well.  My fibromyalgia is a LOT better since I've been on Savella, so the day wasn't spent in a useless debilitating agony of pain, but I was achy and tired and a migraine threatened.

I first discovered, via the computer, that a dear friend of mine who has been working at a scientific facility for a long time now faces that facility's eventual closure, and not even for the most intelligent of reasons.

Then I went to an event and noticed that I really could not see up close, and had a lot of fluid in my eyes (a bit unusual for someone who has been going through a really really really really long flare of Sjogren's Syndrome) and the eyes stung, and so I think I've got pinkeye back again...and have no more antibiotic drops.

Then I was unavoidably late for an appointment with someone (support-group related logistic stuff) whom I am sure did not appreciate it.  Afterwards I went to get a cold drink at a drive-thru and got trapped in The Line That Took So Long I Turned My Gas Off And Sat There.  While sitting, I realized I did not have my cell phone.  So I went back to the event I had been to at the beginning of my rounds, and tried to find it.  The people there even called the number for me.  No cell phone.

I had hurt my knee just while I was driving today (sometimes avoiding the holiday desperados is a split-second thing while they run red lights and otherwise indicate they are running short of shopping time before Christmas) and had a bit of trouble limping back to the car.  That's when the migraine started to show up.  And the really blurry stuff in my eyes.

I hoped for an easy drive but almost hit something which dashed out suddenly into the street.  A black cat, crossing my path.  I had dressed for the cold air but was dying of heat prostration when I got back to the car.  And my old buddy, The Giver Of UV Light (UV light makes me sick), was shining extremely brightly right straight into my sore eyes; no way to avoid it in the direction I was headed.  A lovely lupus rash began to show up.  Wonderful...

By now I was just hoping my cell phone was at home because that was where I was most certainly going.

I got home and some luck!  Cell phone was here!  But I also then noticed that liver-area pain was back.  Too many vital organs being cranky at once.  You know, I sometimes get a bit concerned about all this health wackiness.  But, oh well.  FINALLY I hoped to be actually able to do the Christmas letter and get my cards out, not on time, but at least before Christmas.  The past "Medical Test Fortnight" being over with at last.

Got a phone call.  It was my gyn doc.  You would think I would have figured it out immediately, but that is how tired I am.  Also, how many times (countless) have I been told "your biopsy came back negative..."

Well, this one didn't come back negative.   Guess the roulette wheel had to go from black to red someday.

My ex-gyn, who dumped me for insurance reasons and told me my bleeding problems were no emergency, was mistaken.  I'm glad my new, cheery motto, "Trust No One," popped into my head and motivated me to fight my way past unreachable triage nurses and other ilk to get an appt. with my new gyn.

I have endometrial cancer.  Looks like probably in an early stage, so I'm not ordering a casket.  They will biopsy my lymph nodes to check that part out when I have surgery.  I obviously do need a hysterectomy, as soon as it can be scheduled.

My concern is that with immunosuppression, lung crankiness, a heart problem, liver doing ?, obesity, lupus et. al., I'm not a good candidate for surgery, but hopefully someone will feel confident taking on a patient who is a little more complex than most.  I'm certainly not taking out my own uterus.  Do-it-yourself medicine has its limits.

Friday, December 11, 2009

Another notch on the bedpost...? Liver disease!

Some people collect notches on their bedposts to represent the different persons with whom they have, um, shared their bed.  That wouldn't make a very impressive collection for me, so if I were to bother with notches they really should be for every new diagnosis I get of something wrong with me.  Now my liver is shooting pain signals at me and abnormal enzyme levels to the blood lab and produced an abnormal ultrasound as well.  Yes, liver, I hear you screaming "Me! Me! My turn!  Me me me!!!!"

More later, as it's time to take the car in.  Ultrasounds are not supposed to hurt for days after, but the liver didn't like being poked.  Not sure I feel like doing more driving.  Been driving a medical appts. out of town, not holiday parties or anything cool like that!  Not that many parties are being given during the Great Recession, anyway.  I wanted a holiday party, so I gave my own on the 6th!  Take THAT, powers of darkness!  So there!

Thursday, December 3, 2009

Important Patient Conference In Santa Barbara, CA

If you can attend, I highly recommend hearing these two doctors speak.  You can look up one of them, Dr. Daniel Wallace, at and see the books he has authored at .

Note: please RSVP to attend.  Info:

Santa Barbara Patient Conference
Saturday, December 12, 2009
1:00pm – 4:00pm
Earl Warren Showgrounds
Warren Hall
3400 Calle Real
Santa Barbara, CA 91305

Lupus LA is pleased to announce its Santa Barbara Patient Conference.  Patients from Santa Barbara and surrounding counties will have the opportunity to hear from two of the top rheumatologists in Southern California:  Dr. Timothy Spiegel and Dr. Daniel Wallace.  Participants will also be able to submit questions about Lupus, Sj√∂gren’s Syndrome, Raynaud’s Syndrome, Fibromyalgia and other rheumatic diseases and hear answers from the experts. 

1:00pm – Registration

1:15pm – Welcome

1:30pm – Problem Diagnosis: How we diagnose lupus and
        distinguish it from other similar diseases
        Dr. Timothy Spiegel

2:00pm – New Advances in Lupus Treatment
        Dr. Daniel Wallace

2:30pm – Ask the Experts: Question and Answer Session

This conference is free of charge and open to the public.  To register for this event, please email or call Lupus LA at or (310) 657-5667.  Visit our website,, for more information about our programs and events.

About Me

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I've travelled the distance from an Ivy League college to decades of enforced poverty--because I've needed to qualify for government health care in the U.S., since being diagnosed with lupus at the age of 23. I have a personal blog at that I've had so long I'm probably stuck with :) My other blogs are here on blogger...