Thursday, December 4, 2008

Sickness and Other Things That Make You Popular

Grab your tea or coffee and pretend you've just decided to do your good deed for the day by visiting your Great Aunt Ethel. That's the excitement level you can expect if you decide to read this post. If not, no hard feelings. I secretly admire your lack of reticence in blowing me off.

For the rest of you compassionate souls who've decided to stick around, here's the lowdown on the latest installment of, "As The Stomach Turns."

You may know I have battled "The Mysterious Malady" for about ten years. It started with my feet and legs going to sleep as I sat teaching the kids one day. Unlike the rest of me, they decided to never wake up again. Think the pins and needles after you've fallen asleep on your arm. It was maddening and it was 24/7.

For two years I sought answers and got treated for things I didn't have. One doc put me on diabetes meds because to him it was obvious I had diabetes even without a test. He almost killed me. The physicians creed seems to state: "We hold these truths to be self-evident.....if you're fat this WILL be the root cause of all your health problems." Patient: "Dr., I think I've deviated my septum, contracted strep throat, and possibly sustained potentially fatal injuries in a car accident." Doctor: "I told you to lose weight!"

So, lacking diabetes I kept seeking answers. I found a neurologist who put on me on a med that helped immensely with the leg/foot issues but didn't answer the reason why. They suspected MS and examined my cranial cavity, through an MRI, for evidence of a brain. The brain was there but lesions were not. That was a good thing. More years, more meds, fewer answers. The doctor wanted me to see an environmental specialist at UCSF or Stanford to hunt down problems with a lead exposure in my past. Someday I would if the insurance agreed. Lots of sickness plagued me in between times and I never knew why I got sick so easily or felt weird, or exhausted.

Fast forward a few years and I came home from a family vacation in Hawaii to the next phase of my adventure. Now my liver and spleen were sick, too, and bizarre things began to happen to me including intermittent tremors, weakness, stomach pain, and a near complete inability to take a variety of meds. I will spare you the details your Aunt Ethel wouldn't but, suffice it to say, there were other symptoms and you'll love me for not telling you what they were.

Now, I'm not wild about having my picture taken but there are truly places cameras just don't belong: in your body would make the top of my list. When you consider it, the medical paparazzi only have a few entrances to swarm when trying to get that perfect internal shot. And you will not have an opportunity to cover any of those entrances with a newspaper to avoid prying eyes. They never got the money shot, the smoking gun, the CSI evidence. But somewhere out there I'm sure there's a flattering picture of my colon.

At least the next phase took me to UCSF where they were promptly unable to tell me anything. Well, not that promptly actually. It took two years to discover that the damage was progressing and they had no idea why. More suspicions, more MRI's, and more needles in the muscles to measure progressive muscle loss in my feet. More glow-in-the-dark radiological tests, more dead ends, more conjecture. In the meantime I searched the internet high and low to diagnose myself. Physicians love it when you do this, especially if you offer your input. You will have "NUTCASE" stamped in red letters on the front of your chart.

Finally, with another attack of whatever this is a few months ago, I plopped myself in my primary care doctor's chair and said, "We gotta figure this out. Would you check me for this, this, and this?" He stamped "NUTCASE" on the back of my chart, too, and agreed. Son of a gun.....everything came back abnormal. Now we had a possible working diagnosis: Porphyria. Coproporphyria to be exact and also some immunity issues. Porphyria is a blood disorder that could be responsible for the majority of my issues. More tests were performed yesterday to make the final determination and I won't know the complete bottom line until the end of the month. But that's the way it's looking. I'll explain what it is in more detail in a future post when all the results are in but for now it's just good to have an idea of what it could be.

As Jamie and I sat discussing this with the hematologist yesterday he remarked, "What super smart doctor thought to look for this?" I demurred and said it was actually me who asked for the test. His tone turned decidedly away from "super smart" and he replied, "Well, you can't just figure out what you have that way." Well, there certainly hasn't been any other way, doc.

So, there you have it. I'm battling new symptoms that leave me feeling faint and shaky, and with high blood pressure. It's all making me lose weight. I've dropped 20 lbs. since August. That's the up side. And the antidote for these symptoms is immediate sugar. So, if you see me laying around in a coma, just shove a cookie in my mouth.

There really is a silver lining to just about everything.

Copyright 12/08


  1. Well, aren't you the lucky one? It is my understanding that the treatment for this genetic disorder (I am assuming this is genetic, because the other way to contract this disorder is way too much fun, and you wouldn't hold out on me!)anyway you treat this with bedrest, high carb diet, and a little haldol. What could be better? You know I jest and you know that I can relate.
    Unless you have a run of the mill disease, you do have to push for a diagnosis. Doctors won't do it on their own, it is too costly, time consuming and risky and they have to be made to care. Now if you want a vaginaplasty, botox, or any other cash only service only whisper otherwise you'll be stampeded by the white coats. Do I sound bitter? Sorry but for the last year and a half I have felt like I have a sunburn. My doctor's response is "you are weird." Blog you later.

  2. Hi Friend! Thanks for hangin' out with me. I KNOW you know the complete insanity of trying to get help when you're too sick to try and get help.

    No, I didn't do drugs and get acquired porphyria. It seems it is the genetic type (if all the tests come back still saying the same thing). The biggest problem is I can no longer take the meds that will help my damage and I can't get an infection because I don't do antibiotics well either. It's been a scary ride sometimes. I hope you get the treatment you need for your struggles, too. YOU have been through the wringer. I hope we both get answers because the monsters in the dark are WAY scarier than the ones you can look at eyeball-to-eyeball. LOVE YOU!

  3. Thank you to all of you who are sending me comments by email and facebook! Thanks for letting me know what you think and for all the nice things you say. :)

  4. Hi Robyn,

    Here's a book for you that I found very inspiring. "You Can Heal Your Life," by Louise Hay.

    Wishing you good health,


  5. Rob,keep sticking up for yourself. I was 22, losing weight(then I didn't have it to lose, and the doc wouldn't even examine me. I found a different doc and he found the problem. I learned then that they are only human and get tired of their job too (no excuse for neglect or bad treatment, but true nonethless). I'm praying good health for you!