February 21, 2008

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.  

February 7, 2008

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.