I Can't Even Stand the Word

I was watching a health documentary over the weekend on the nervous system.  Naturally, the topic of pain was addressed.  I couldn't handle hearing about how pain can be beneficial and how pain can be turned off in times of extreme trauma.  My pain doesn't turn off.  My pain isn't beneficial.  

Every time I heard the word pain, I grew more and more agitated.  I eventually had to change the channel.  I realized then how much I hated the word pain.  I resent that word for what it connotes in my own life.  

In case you haven't noticed, I make a point to find funny words to substitute for vagina.  That's another word I don't particularly like.  The substitutions add some much needed levity to the topic of vulvodynia.  Perhaps it's time for me to find some better words for pain.  I went to thesaurus.com and couldn't find anything better.

Frankly, a lot of those words seem even worse than pain: agony, anguish, torment...  

Ultimately, I realized what I really wanted was to have vulvodynia without pain.  But no matter what word I use, silly or serious, at the end of the entry, I'm still in pain.       

Women Aren't Supposed to Sweat... Especially Not There...

I had about 5 good days. That's remarkable. It's been rough lately. Sandwiching those 5 days are two different yeast infections.

The first yeast infection began the day after I spent 30 minutes on the elliptical machine and 30 minutes weight training. By the following afternoon I felt like I had a yeast infection. It took me a little while to figure out the cause, but I'm fairly confident that it was the extensive (at least for me) workout.

This is an embarrassing topic, even for me, but I think my sweaty hatchet wound caused the yeast infection. I don't normally have a problem with lady sweat. Except in the summer, but who doesn't then? I also haven't been in the habit of working out EVER, so this is pretty new to me.

My suspicions were confirmed a week later when I developed what appeared to be another yeast infection after dancing for 3 hours straight at a wedding. My baby cannon got ridiculously sweaty that night.

I know, this is gross. What can I say? It's a topic I need to address.

So now, I'm a mere 10 days away from a tropical vacation and I need to stay fit. I want to go back to the gym, but I'm worried about making this latest yeast infection, that developed yesterday, worse. I certainly don't want to be flared, but I don't want to undo all my hard work to get in shape.

I've been trying to find something that could help to keep my kitty dry. I don't want to use anything with chemicals because most likely I would end up with a flaming honey pot. I'm going to try powder first. I have baby powder and I also found a Vagisil powder. Hopefully one of those will do the trick without making anything worse.

Yeast Infections and New Directions

Well being sick was therapeutic, but taking antibiotics wasn't.  I wound up with a yeast infection towards in the last few days I was on amoxicillin.  That naturally caused a flare, which put a damper on Valentine's Day activities.  

I saw my doctor for a refill appointment last week and told him that I wanted to start a support group in the area.  He told me that he would hand out brochures and fliers for me.  So far I haven't heard from anyone, but it's only been a few days.  I hope I can generate enough interest.  

I think blogging and forums are so helpful, I can only imagine a support group would be even better.  I'm learning so much from other women's stories online and I want to share it with others.  Living with vulvodynia can make you feel so isolated and ashamed.  Having a tangible network of other women who understand could make such a difference.      

I finally dragged my kneeling chair to work and it helps.  I still have pain, but it's considerably better than sitting in a conventional desk chair.  Being lazy on Tuesday, I accidently tested the difference.  I had a lot of work and I needed to be incredibly focused.  I thought being comfortable would help, so I sat in a large desk chair.  After 3 hours I was so flared; it was awful.  I was planning to go to the gym and run errands after work, but all I could do was go home and recline to try and quite my pudendal nerve.  

The following day, I only used the kneeling chair.  I didn't go home in nearly as much pain.  

God, I don't know what happened to me in the last few months.  I used to go days and days without pain.  Now I'm lucky if I get a few hours.  It sucks.  I can't think of a better way to explain it.  

But I'm soldiering on.  I'm putting a lot of my energy into my class and trying to remain proactive in my care.  I'm thinking about switching from Lyrica to Neurontin.  There are considerably fewer side effects on Neurontin and on Lyrica, I have to deal with virtually ALL the side effects.  

My memory is terrible because of Lyrica.  I'm in the most important relationship of my life and there is so much I just can't remember from the past year.  It's embarrassing.  I feel guilty, but I can't help it.  Before Lyrica, I had a remarkable memory.  I could recreate every moment to the smallest detail.  Now it's a blur.  I've been in this drug-induced fog since January 2007.  Don't get me wrong.  I need the drugs.  They help make life livable, but I think I can do better.  At least I hope I can.  

Weight gain has also been an issue.  I've probably gained 30 pounds in the last year.  I've always been on the slight side and 30 pounds is a lot.  The weight completely changed my figure.  While I liked having boobs for the first time in my life, I didn't like the rest of it at all.  

I've been going to the gym for 4 months and that's helped, but I'd like to lose a few more pounds.  Maybe changing drugs will make that a little easier.  

Making Accommodations

As I struggled with the last flare, I decided to take action. I ordered a new cushion and a kneeling chair to help keep me off me hot spot.

The cushion is from the Interstitial Cystitis Network. I learned of this product from the forum. I’ve tried cushions before with no relief. But people on the forum gave very positive reviews, so I gave it a shot. I use it in the car and it’s helping. I'm thinking about purchasing a second one for my boyfriend's car. I would definitely recommend the cushion.

I haven’t put the cushion through the rigors of protecting my butt during a full day at day. I don’t know how much help it would be, because ultimately I need to find a way to sit differently.

My mother suggested a kneeling chair. I called my doctor’s office to see if he recommended them to his patients, but his receptionist said she had never heard of them. Then I checked the forum. Again, people provided a positive response to the chair.

Unlike the cushion, with is less than $27, these chairs can be expensive. I needed to be sure it was worth the cost. After some searching, I found a back store that carried one model of the kneeling chair.

It was a perfect day to test it, because my gash were on fire. I arranged myself in the chair (it’s a little awkward) and found that the pain level was that of standing. I had just been sitting in the car (pre-cushion) and I was very uncomfortable. The kneeling chair really doesn’t allow you to put as much weight on your sniz.

I decided after sitting or kneeling in the chair for less than 5 minutes, I decided to give it a try. I ordered one online because it was cheaper than buying it in the store.

The kneeling chair hasn’t made its way to my office yet, because I park far away and I didn’t want to roll it or carry it up the street. It’s very light, but I guess that shouldn’t be a surprise considering there isn’t much to it.

I'll let you know if it can pass the test of time.

Sometimes Being Sick Is the Best Medicine

I think I got myself in trouble for using the word “worst” in a previous entry. Pain is dynamic and scales are relative. What was worst then is peanuts now.

I strongly believe that the last round of injections caused a nasty flare. In my attempt to avoid the word worst, persistent and hopeless are two good words that come to mind. I couldn’t sit for half an hour without searing pain. I got desperate and emotional.

Honestly, the greatest blessing this past week was getting really sick. I felt horrible. Sore throat, fever, headache, dizziness and complete exhaustion. I got permission to work from home on Wednesday. Like a good patient, I stayed in bed all day. Subsequently, I had no pain for an entire day. Good start.

On Thursday, I stood almost the entire day. Some pain. Less burning. I still felt sick as a dog! Friday, I wasn’t strong enough to stand. I did everything I needed to do for the day and got permission to leave early. I got right back in bed. Again, less pain.

Meanwhile, I was getting worse instead of better. I had a blinding headache for 8 days. I was so weak, I got winded walking from my car to the house and I had to rest for a long time after completing simple tasks. My mother forced me to go to an urgent care center. There I was told that I had sinusitis. A doctor gave me antibiotics and a note excusing me from work on Monday.

I am feeling so much better. Modern medicine is incredible. I started to make a major comeback in a day and a half once I began my course of antibiotics.

Thanks to my sinus infection, I was able to rest and stay off my pudendal nerve. It was enough time to quiet a raging flare. I feel very fortunate for the time I had to recover. I thought I wasn’t going to bounce back from that flare. I read that if not done precisely, a nerve block injection could cause irreparable damage to the nerve.

I thought I was ruined.

Honoring a Pioneer of Physical Therapy

On January 28, 2006 the world of physical therapy lost one of its most influential pioneers. Florence Peterson Kendall championed for physical therapy in the 1930s when this country did not believe in its relevance. She wrote the book that has become the gold standard for the profession.

Her career spanned 75 years. Even in her hospice bed, she continued to work, giving treatment advice to nurses and their families. She truly touched everyone that she met. She was an incredible woman.

There are many pelvic pain sufferers out there who have benefited from physical therapy. I know I have; and I thought you might want to know who to thank, in part, for the treatment you have received.

Vulvo-Denial

I just want to be fixed. I keep grasping at straws. With every new treatment, I tell myself, “This is going to be the one.”

After the second round of injections failed, I became very disheartened. I wanted more information and my boyfriend helped me find it. He’s a master of searching the internet. He found an extremely comprehensive forum for people with pudendal nerve damage.

They discuss everything! At first, I found this site encouraging. There’s so much I can learn from people who have posted. But the forum also gave me a glimpse into the lives and daily struggles of these people. It was grim.

Some of the contributors have been living with nerve pain for many, many years. Some longer than I’ve alive. A lifetime of pain. Oh my God! That’s not how I want my life to be. One woman posted that after the pudendal nerve decompression surgery, that I so desperately wanted, she can now sit for 2 to 4 hours, 6 with breaks. That’s her best! I want this surgery to put an end to my pain, not slightly modify it. I had such foolish, high hopes. Now I’m terribly disillusioned.

As I reflected on my own pain, I realized that this is going to be with me for the rest of my life. I am going to be in chronic pain for the rest of my life.

I’ve tried, since my pain began, to lead a normal life. I’ve done everything I could to ignore my pain and maintain appearances. I want to be able to have sex whenever the moment arises, but I can’t. I’ve adjusted to taking a day or two off (sometimes weeks) for recovery. That’s ok with me. There are plenty of other things I can be doing that are almost just as fun. I refuse to let my vulvodynia interfere with my relationship.

It hurts me so much to admit that I am completely unable to prevent vulvodynia from interfering with my job. Like so many other people on that forum, I have to admit to myself that I can’t sit at my desk at work for 8 hours like everyone else.

When I wake up in the morning, I generally don’t have pain. In my sleep, I put no pressure on my pudendal nerve. Within an hour of getting to work, a persistent burning begins and some days I’m still feeling the same pain when I go to bed. I’ve tried cushions and doughnuts, but nothing has helped.

I realized this week that I just can’t sit like a normal person.

This might sound stupid, but to me, not being able to sit for extended periods of time at work means I have to constantly be thinking about my vulvodynia. I just want to ignore it, but I can’t. I have to accommodate it. Essentially, I feel like my vulvodynia is taking over my life.

I feel so defeated. I don’t want this life. I’m only 25. I can’t imagine a lifetime of pain. A lifetime of special accommodations. I don’t want to draw attention to myself. I don’t want people to look at me and think there’s something wrong. I just want to be like everyone else. But I can’t.

The question is, “Now what?” I have no idea. I have a desk job. Right now, I’ve got my computer and keyboard propped up on boxes of mailing envelopes and my mouse is on a hardback book. It’s totally ghetto. I’ve been standing for most of the day and I’m still in pain.

I don’t know how else I can accommodate this problem. I feel like I am back to square one. I need to sit down with my doctor and access my situation. I need a new game plan, but unfortunately I can’t see him until February 9th. Until then, I don’t know what I’m going to do with myself.