Dear Readers,

As you all know, I suffer from chronic pain. There are days when the pain is unmanageable and I have to resort to prescription pain medication to be comfortable. On those days I take Vicodin, an acetaminophen combination drug.

The U.S. Food and Drug Administration (FDA) is considering advice from its Advisory Committee that would eliminate all prescription acetaminophen combination medications (like Vicodin, Percocet). These changes could negatively affect me and other people suffering from pain who rely on these medicines every day.

I signed the petition "Acetaminophen: Educate, Do Not Regulate". I'm asking you to sign this petition to help us reach our goal of 5,000 signatures. I care deeply about this cause, and I hope you will support our efforts.

Thank you for your support,
Quinn

I Take Vicodin and the FDA Wants to Take It Away

This is outrageous! A panel has just recommended that the FDA ban Vicodin and Percocet because they can cause liver damage. What's next, are they going to ban alcohol? How many people suffer from liver failure related the excessive alcohol intake? The important word in that sentence is excessive.

How many people who had liver failure from these meds actually had a prescription, of that number, how many of those people were taking them correctly? One concern is that people would take Vicodin and then take Tylenol or NyQuil, not realizing that all of these drugs contain acetaminophen. Then why don't they just put a big warning on the bottle, "this drug contains acetaminophen and may interact with other drugs that contain acetaminophen."

I take Vicodin as needed for pain. On average, I probably take it once a month. I'll take one pill in one day and no more. I don't mix it with other pain killers or cold medications. I take it safely and responsibly. But apparently the FDA panel doesn't think I'm capable of properly taking my medication. Instead of making it more difficult for these medications to be prescribed to the wrong people, the panel advises that the drugs are taken off the shelves completely. It doesn't matter that many Americans rely on these medications to living comfortable, functional lives.

This decision is so painfully short sighted! They aren't thinking about the people who need these medications, they are only concerned about the people who abuse these medications, the people who shouldn't have access to this medication anyway.

I'm frightened and angry. I strongly believe that I have the right to take this medication responsibly. If the FDA takes away my medication, the FDA takes away my rights as a patient with chronic pain.

The Vulvodynia Continues

I strongly believed that my pudendal neuralgia or never damage is a bigger problem than my vulvodynia, but I know better now.

I've gone to a lot of trouble to accommodate my never pain: I stand all day at work, I use the kneeling chair on occasion, I use a cushion in the car, I recline at home and avoid sitting. And for the most part, I've been doing well, certainly better than a year ago when I was in pain every day.

I use a compound for the vulvodynia at times, but sometimes it irritates my urethra, so my usage is sporadic.

My partner has been having some personal issues that have taken a very serious toll on our relationship. Last week was rough, but by Friday we had talked things through and we were back on track.

Makeup sex is the best part of a difficult time and let's just say that I was glowing on Friday night. Virtually no pain. Saturday, we needed the makeup some more, if you get my drift, but I wasn't physically ready.

I've always had the policy with my partner that I need at least a day off to recover, but I'd been doing so well with pain management and we were suddenly doing so well as a couple that I didn't want to stop making up.

I felt pain immediately and I thought it would diminish as we continued but it didn't. I was still in pain hours later. I realize now that by breaking my own rule, I started a flare. Two days later and I'm still in the same amount of pain.

I made a poor decision, but sometimes I just want to forget I have vulvodynia and live in the moment. I have to learn that there will be other moments and while the moment will pass quickly, the pain caused by not respecting my physical needs will last for days.

What's You Anti-Drug?

I'm sure you've all seen the ad campaign: What's Your Anti-Drug? The commercials show teens doing things that make them happy or challenge them and make them never want to try drugs. It's a little hoakie, but it stuck in my head.

Last night while I wasn't paying attention in class I posed the question to myself. Of course, in my case, the drugs are painkillers and narcotics legally prescribed by my physician.

I hate taking hardcore pain meds. I take them as a last resort or before going to bed in the homes of knocking out the pain signals. That might not be scientifically accurate, but it's helped me before.

I realized there are a number of things that I do to help reduce my pain or at least distract me from it.

-School is a big one. Even though those awful desks give me some grief, being so busy with school keeps me on track.

-Home improvements. When I hit a low, I usually pick myself up being doing something to improve my house. Even little things leave me so satisfied and content. Last weekend I got down on my hands and knees and scrubbed the bathroom floor. It looks great and it made me feel great. I may have inadvertently gotten high off the cleaning products, but I'm still going to count that as an anti-drug scenario.

-Being outside. Fall is my favorite time of year. You won't see bluer skies or prettier sunsets all year. The air is crisp and invigorating. I love being surrounded by nature. It makes me feel at peace and grateful for my life.

-A heavy movie. It doesn't even need to be even have to be a particularly good movie, as long as I find myself completely immersed in another world. Action, Fantasy, Thrillers, especially on the big screen. It's really nice to leave my life for a couple hours and be somewhere else.

-Lighting candles and opening the windows at night. This is something I used to do in my single days all the time. Now that I'm cohabitating, I don't have a lot of opportunities to light candles and relax. There isn't a lot of peace in my home. I've vowed to create a sanctuary for myself with candles, relaxation music and a fountain.

-A hot bath with lit candles. Can't get any better than that.

So, what's your anti-drug? What reduces or at least distracts you from your pain?

If you can't think of anything, you've got homework to do. Find something that beings you some peace and makes you happy. There's something out there for everyone. You just have to look.

Vulvodynia Pain Management: Putting Off the Pudendal Nerve Surgery

I've been grappling with whether or not to go through with my surgery for the last month.  I was scheduled to go under the knife in August, so I had to decide quickly.  

I had been in a terrible flare for nearly 2 months, and surgery seemed like my only hope.  But the flare finally subsided 2 weeks ago.  Since then, I've lost that sense of urgency.  I began really thinking about what surgery would entail and the possible outcomes:  

-I could get better after the surgery

-I could stay the same

-I could get worse

The question was: am I ready to put myself through such and ordeal for those results?  Worse than that, there's nothing after surgery.  It's truly the last resort.  I'm not ready to explore my last resort.  As bad as things can be, I'm terrified that they could become worse.  You can't undo surgery. 

Right now, I have a lot of options.  I can increase medication, change medication, increase compound use, change compounds, and most importantly, I can change my routine to truly accommodate my physical needs.  

I've fought long and hard to have the kneeling chair and the height adjustable work station, but I don't always use them.  Some days I'm tired and I just want to slouch in a normal chair and limp my way through a work day.  By the time I leave work, the consequences of that decision are evident and often the flare I've created lasts for days.  

Obviously, I'm not doing enough personally to avoid pain.  I need to do more.  I'm now treating my lady parts like fine china.  No more sitting in normal chairs at work.  I stand most of the day and when I get tired or I really have to concentrate on computer work, I'll use the kneeling chair.  I've been able to avoid a long-lasting.  I'm still in pain for portions of the day, but, thank God, it's passing.  

At home, I recline as often as possible.  I'm very conscious of how I arrange myself on any piece of furniture.  I also have to be careful sitting down and getting up.  

The other night I was in a hurry to get in the car and my butt hit that seat too hard at just the right angle.  Pain started immediately and there was nothing I could do to reduce it.  On the ride home, I was worried I had started something terrible.  But I reclined for the rest of the night and by the next morning my pain level was back to zero.  

I'm learning to really listen to my body.  As soon as I start to feel uncomfortable, I know that something has to change.  I've been relying on my doctor and medication to make me better, but I haven't done enough personally to make myself better.  

When I come to the point where I can no longer avoid the pain, I will know that it is time for surgery.  But while it is in my hands, I'm going to do everything in my power to manage my own pain.