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.


  1. Omg...Hope this surgery will be the end of it and you'll have a durable remission! (Hugs)

  2. You're going to be a research scientist's dream! You'll come out of this just fine since you've battled so many other things and you are still here. It'll be the same again, trust me, and if it helps, I'll be thinking of you all the time.


  3. Oh my, this made me so depressed. :(
    I envy the other commentators that seem to be so optimistic in their words. I wish I could be too, as that is what you want to hear I am sure.
    But to be honest I just feel so sad reading this, feeling that the world is not a very fair place at all. How can someone that is so kind be hit by so much illness.
    Truly, you will pull through it - i know this for sure, but it breaks my heart knowing you are suffering...
    Both yours and Toms ordeal has put my life into perspective. That which I thought was so depressive news I got recently, seems to pale in comparison to yours. I have so much to be thankful for and I should also be every day.

    I am sorry for this long comment; let me just wish you a really lovely Christmas, I hope you can spend it with those that truly love and care for you.



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...