Think “Negatively”

When I feel stress, I internalize it. That’s part of “the performer” in me. My mother set an example for me by being “stoic,” and I follow her lead. I can tell you right now that if you try to keep stress bottled up inside, it manifests in your body and can be a pain in the neck!

I thought that the year my Momma died was the most stressful year of my life. The day I was informed of her cancer diagnosis was the same day that I buried my best friend after his untimely death in a fire. I had spent the week before in East Texas working as a smiling storyteller during the day, and returning to the hotel at night to grieve and plan his memorial service.

For the next year, I watched helplessly as my mother’s disease progressed. She did notgo gentle into that good night.” She raged.

To my eternal chagrin, I wasn’t much help to my sister in caring for Momma and getting her to chemotherapy sessions. Although I live only 45 minutes away, I work for myself. I had many bookings as a storyteller that took me out of town; most of those bookings had been made a year in advance. I couldn’t re-arrange the dates, because school calendars are not all that flexible. I couldn’t cancel the engagements, because I don’t get paid for “sick leave” or “family leave.” If I want to get paid, I have to show up and perform. I was racked with grief and stress and guilt (not necessarily in that order).

The cancer went to Momma’s brain. Her final weeks were at home under the care of Home Hospice, but my little sister, my big brother, and I were with her constantly. Her pain was so great that she was finally given strong medication and slipped away in a morphine dream.

That morning, as I drove back to Denton, the stress finally reared its ugly head. I realized that there was intense pain on the left side of my neck. I could not turn my head to the left. Over the next year I was in constant pain. I went to doctors, chiropractors, massage therapists … no one could ease the pain. I kept working at trying to regain mobility, and finally just went on living life while trying not to think about it. Gradually, without my even knowing it, the mobility returned and the pain went away. A few months ago, I realized that I was finally pain free.

This morning, the pain in my neck is back with a vengeance.

Yesterday, I had an appointment with a gastroenterologist at the request of my physician. I thought I was going to her because I have high cholesterol (extremely high). My physician wanted to treat it aggressively, but many of the medications that control cholesterol are damaging to the liver. I was diagnosed this year as having Hepatitis C antibodies in my bloodstream. Probably I got the disease in 1981, when I gave birth and received a transfusion. Since Hepatitis C is a disease affecting the liver, my doctor has been reluctant to give me much medication. I thought my physician was just sending me for a routine check.

The gastroenterologist had not yet received the results of blood tests taken by my physician when I arrived. With no information on my condition, she proceeded to explain to me the “worst case scenario.” For 80% of people who have had Hepatitis C, chronic liver disease develops. The liver gradually begins to scar, and the scar tissue does not function. Cirrhosis occurs, and it can take twenty years or more to develop. It’s not a pretty way to make an exit.

As we waited for the paperwork, the gastroenterologist explained that the liver function tests I had taken would tell part of the tale. But, the only way to know for certain if I had liver damage was to have a liver biopsy.

This involves a big needle, and I am terrified of needles!

She also explained that if I have liver damage I could be facing a year of treatment with Interferon. From everything I’ve heard, that meant I’d be nauseated for a year. It was at that point that I broke down in tears.

I don’t know if the trigger to my tears was the thought of the needle, the Interferon, or just exasperation at having more medical crap in my future. It was the first time I had allowed myself to cut loose and wail in public about this diagnosis, and I think I frightened the doctor! You would think she had seen it before.

A few minutes later, she got the results of my tests and studied them. She said, “I may have good news.”

The results of the tests that were done were all good. Furthermore, during my physical exam, she had not felt any hardness in my liver, which is a good sign that there is no scar tissue buildup.

But (and there is always a “but,” isn’t there?), there is one more blood test that was not done. It is the one that will tell the tale.

If that test is negative, then it is possible that the positive results for Hepatitis C are false. A false positive could be caused by Rheumatoid Arthritis or a thyroid condition (both of which I have).

If that test is positive, then the worst case scenario begins.

I’m going to the laboratory to get that final blood test this morning. I’m shaking like a leaf in the breeze. My neck feels as if Godzilla has me in the grip of his teeth. My sister told me to “think positive.” Heck no! I’m “thinking negatively,” because I want the test results to be negative!

Today, I’m not allowing comments, because I don’t feel like talking. I want to get this blood drawn and then just putter around working on making some medicine bags. I don’t really need sympathy (hugs would be nice, but you can’t reach me, can you?), because everything might turn out to be hunky-dory. You could help me though, by sending out good thoughts. I want you all to please “think negatively!”


Thursday Thirteen Number 41. Questions.

I haven’t played the Thursday Thirteen meme in a long time, because I’ve been very pre-occupied and self-absorbed lately. Health issues have plagued me (so to speak). I recently related that I have Hepatitis C antibodies in my blood.

Lots of folks have been asking me questions. I’m not an expert, and I haven’t seen a gastroenterologist yet. Most of the information I can give is from my family practitioner and a website by the C. Everett Koop Institute.

I hope you will slow down long enough to read this (I know you are in a hurry to comment on as many pages as possible). It’s important for you to have this information, because an early diagnosis of Hepatitis C increases your chances of survival. Though I don’t use Mr. Linky, leave a comment and your last blog post will show up in the comment box.

1. Why in the world would you write about this on the internet? Now everyone will know you have it? I want everyone to be aware of Hepatitis C. Studies suggest “over 200 million people around the world are infected with hepatitis C - an overall incidence of around 3.3% of the world’s population. Statistically, as many people are infected with HCV as are with HIV, the virus that causes AIDS.” Most of the people infected don’t know it.

Hepatitis C: PSA by Willie Nelson & Others

2. Aren’t you embarrassed to tell people? No. There is indeed a stigma attached to the disease, but I want you to know that anyone can get it. Hepatitis C is very indiscriminating about who it will infect.

3. Any tattoos? This particularly insensitive question was asked of me by someone who should have known better. It indicates an ignorance of the disease that is prevalent in our world, and seems to subtly suggest that “it’s your own fault.” It’s like assuming that all people with diabetes are overweight, all lung cancer patients were smokers, all AIDS victims are homosexual. Yes, there is “risky behavior” which increases your chances of getting Hepatitis C. Getting tattoos is one (even if the needle isn’t infected, the ink can become contaminated). IV drug use and sexual activity with multiple partners are other risky behaviors. I didn’t engage in any of them (though I did seriously think about getting a lightning bolt tattooed on my butt…don’t ask).

4. How did you not know you had it? The symptoms of Hepatitis C are like the flu until it reaches advanced stages. It’s called a “Silent Epidemic” for that reason.

5. Are you contagious? Yes. But, you won’t get it from me by shaking my hand, hugging me, or even giving me a kiss. Hepatitis C is “blood borne.” You probably don’t want to share my toothbrush or razor. Because the Hepatitis C virus mutates rapidly, developing antibodies does not produce immunity. “In more than 85% of all cases, whether they progress to chronic liver disease or not, the infected individual carries the virus for life. This means that they also remain contagious for a lifetime, able to transmit the virus to others. And because of the long progression of the illness, even patients who will eventually die as a result of hepatitis C carry the virus for decades before it takes their lives.”

6. I have regular checkup and have blood work, so I probably don’t have it, do I? I certainly hope not. But, unless you specifically had a test for Hepatitis C, you don’t know that for sure. If you have given blood, it has been tested for Hepatitis C, but don’t use blood donation as a screening test!

7. Who should be tested? You have to decide for yourself if you should be tested (though after my experience I’d say that whether you think you have a risk factor or not you should check). Here are some…not all..risk factors (in no particular order):

  • Blood transfusion before 1992
  • Use of IV drugs or snorting of cocaine (even if it was a one time experiment)
  • Multiple sexual partners
  • Health care or emergency worker who comes into contact with blood.
  • Served in the military, especially Viet Nam
  • Were ever incarcerated
  • H/C positive mother
  • Alcoholism
  • Had a vaccination with a pneumatic injector
  • Tattoos and body piercings
  • Kidney Dialysis

8. Can you protect yourself from getting Hepatitis C? Well, here’s a link to click for some tips.

9. Are you going to have to make lifestyle changes? Probably. I’m going to have to exercise more and eat a balanced diet. I’m going to probably have to give up drinking my occasional Guinness, as alcohol consumption can speed up liver damage. And, I’m going to probably have to be monitored (read that “stuck with needles”) regularly to make sure the disease hasn’t come back. So far, no one has told me I have to give up bacon, so I’ll be OK.

10. Will it come back? So far, nobody has been able to definitively answer that question. It’s very possible; “individuals cured of one strain will be prone to reinfection by any of the other strains.”

11. Is there a vaccination for Hepatitis C? Not yet, but there is treatment.

12. Are you scared? Duh. I’d be lying if I said I wasn’t. I was a lot more scared before I got the final tests results. The waiting was very stressful. I’m most afraid that I have inadvertently infected those I love (heck, I don’t even want to infect those I don’t love). If you are wondering if I’m scared I’m going to die….I figured I was probably going to do that anyway. My Daddy told me a long time ago, “Gal, you don’t get out of this alive.”

13. So, now are you going to start blogging about Hepatitis C all the dadgum time? Heck, no! I don’t want to be a “victim blogger.” I’m not a “victim,” and I don’t want sympathy. I’ve got a disease, but it doesn’t have me! I’ll be back to my silly self before you know it.

Thanks for visiting. Y’all go make it a good day.


Confidential To Blood Donor

Several months ago I went down to my local blood bank to donate platelets. I was trying to bring attention for the need to be tested to donate bone marrow, so that children like Taten Court could get the marrow they need to survive cancer.

My attention was brought to something else entirely.

I got a letter from the blood bank that was marked “Confidential to Blood Donor.”

Hmm,” I thought to myself. “That can’t be good.

It wasn’t.

The letter informed me that my blood tested positive for Hepatitis C antibodies, though negative for the virus itself. It further explained that I could have “been exposed to the Hepatitis C virus but may have cleared the virus” OR I “may have a false positive antibody result.”

Wait a doggone minute!” I thought. “This has to be wrong! Hepatitis C is a disease for people who are drug users or are sexually promiscuous. This has to be a false positive!

Wrong on two counts, Shelly.

First of all, I’m in a group at high risk for Hepatitis C (for two reasons).

  • I had a blood tranfusion in 1981, before blood banks began testing for AIDS and Hepatitis C.
  • A few years later, I cleaned up a very messy suicide (without gloves, of course) when our neighbor across the street blew his mind out. I practically wallowed in blood and brains. The man was an alcoholic and could have been a drug user for all I know.

And, after a couple of months of waiting to get an appointment with the proper doctor, I’ve discovered that I do, indeed, have antibodies for Hepatitis C.

How in the world could I have had something as horrible as Hepatitis C and not known it?

It’s symptoms are like the flu, and it’s easily overlooked. Dr. C. Everett Koop said on his website dedicated to hepatitis,

“We stand at the precipice of a grave threat to our public health…It affects people from all walks of life, in every state, in every country. And, unless we do something about it soon, it will kill more people than AIDS.”

But, I only have the antibodies, so I’m in the clear aren’t I?”

Unfortunately, no.

According to the blood bank, and my doctor, “a majority of individuals (75-85%) exposed to Hepatitis C virus goes on to develop chronic infection that may eventually lead to liver disease.” That includes cirrhosis and liver cancer.

I’ve been waiting for many weeks to finally get the outcome of all these tests. I could smell my fear, and I’m sure you had to smell it as well. The waiting and not knowing has been so stressful that it has been eating me from the inside out.

I haven’t been visiting blogs, I haven’t been answering comments or e-mails. I just stay away from the computer, because when I sit down the first thing I do is Google “Hepatitis C.” It just scares me sillier.

It may take me awhile to get back in the groove. I’m trying to digest this right now, and still have to make an appointment with a gastroenterologist.

Tonight, I’m telling myself how lucky I am.

Yes, I am.

  • I could have gotten AIDS from the transfusion or the blood exposure, BUT, I DIDN’T.
  • If I hadn’t given platelets, I might not have found out about the disease until there was extreme liver damage. BUT, I FOUND OUT. And, while I was at it, I discovered that my cholesterol is through the roof and my thyroid is out of whack. Now, I’m on meds, so maybe I’ll feel better soon.
  • As yet, I have no liver damage.
  • Though there is no cure for Hepatitis C, and it can come back at any time, RIGHT NOW THE DISEASE IS NOT ACTIVE.

I’m lucky. I’m lucky. I’m lucky.

Maybe, if I say it enough times, I’ll believe it.