Research

Today I submitted a public statement to The Institute of Medicine, charged by the Secretary of Health and Human Services. They are doing a consensus study of our country's current state of pain research, medical management and education and are seeking comments from chronic pain sufferers and medical professionals who treat chronic pain disorders pertaining to:  

     (1) Barriers to medical care; 

     (2) Opportunities to improve pain care; and 

     (3) Groups that may not be adequately treated for pain.  

Basically, I briefly summarized the impact my disease has on my health and quality of life.           

I also shared my story with the NVA (National Vulvodynia Association) who may pass it along to local and national newspapers.

I am excited to be a part of this and hope good things will come out of it! ~S   

 

Work Week

This week was strange for me. After almost ten years of being a stay-at-home mom, I started working from home on Tuesday. I also got offered a second job as a freelance editor for a medical group, which I gladly took.

After looking for work for almost ten months, you'd think I would have been more excited, but I wasn't. I have no idea why. A week before, I pictured the job offer call and imagined me running to the store to buy some special drink and snack to celebrate and then revealing it to Matt in a neat way, but that didn't happen either. I just simply told him. I think he was more excited than me. It's not that I don't want the job, I totally do and am grateful that I got it and started another one-I just can pinpoint why I am in such a funk.

I start the freelance job in two weeks which is good because I am currently training for an online instructor position at a University. That training lasts four weeks with one week break in between. It's a little like being in school again, but luckily I am the one grading the work instead of doing it. The training involves two courses, doing assignments for a panel (DQ's, responses and quizzes) and the other one is a simulated course. I have to interact with mock students, grade papers, provide advice and do everything an instructor would do. If I pass the training, which I cannot imagine I would not, I will get offered teaching jobs. Pretty cool.

The downside about BOTH my jobs is that they are contract positions-the work is not steady and it is not guaranteed. I will have to bid for jobs and it could either be really busy, slow or nothing at all. I am looking at it in two ways: I get to work from home (except when I have to go on site for the freelance job to pick up/return work) and I have something to put on a  resume besides education.

I have enjoyed it so far, despite the fact that when I am on the computer, my kids keep coming in and talking to me. They have no concept of me working AT ALL. It would be easier if our house had a little more room for a desk or home office-right now I just sit on the couch with the laptop and work-it's how I got through six years of college tho, so I will survive.

After I get done with the training for both jobs, I am going to look for more work, both freelance jobs and teaching opportunities. Wish me luck!

I am convinced that my funk has to do with the fact that I am hard on myself, expect more and have high expectations. In grad school if I got an A-, I was beating myself up forever! With these two jobs, I still feel like a failure and I'm not sure why. Maybe once I start actually receiving a paycheck (these four weeks training at the University are NOT paid) I will feel like I am contributing.

I realize that many people across the United States are unemployed, can't find work or are losing their jobs and believe me, I am grateful to have two jobs. Again, it's just because it is not guaranteed, steady and I am not officially starting one for a few weeks and not getting paid for the other at the current moment that it still feels like I am doing NOTHING. I am hoping I will feel different in a month when all the training is over and I am actually getting paid to work. ~S

Weekly Quote & Other Ramblings

“We so often look so long and so regretfully upon the closed door, that we do not see the ones which open for us.”
 — Alexander Graham Bell


Yesterday was tough. Plain. And. Simple. I did not get dressed, brush my hair, or leave the house. Why? Perhaps I was frustrated at the lack of information and suggestions I received at the support group, the various things I have going on (fissures, staph infection in my nose & major cold sores on my lip) or maybe I just needed a day to just do nothing.

 I think it's hard for me to justify days like that because I feel like since my husband is at work and I have three kids to take care of, despite being sick, I need to be a super mom & wife. But some days, that is just not possible and I have to be okay with that. My blinds, top of fridge and many other corners of my house are dusty from all the construction, closets need to be organized and the baseboard needs to get finished. But alas, I just cannot find the motivation right now. Shocker. I know.

Today is a new day and frankly, I'm over it. I woke up today and met a friend at a park, had a lunch date with my husband, went grocery shopping and made sugar cookies with the kids. I am meeting a friend in the morning to hang out and the next few days will be spent with my husband (on his days off) doing fun things with the girls for Spring Break.

I think for me, when I get in a funk, the key is to plan outings with friends and make myself suck it up, deal with the pain and live life. But, in all honesty, I cannot possibly do that every single day. Today, after I showered and was about to head out the door to meet my friend, the itching, burning and stinging started. I get so sick of it. It's hard  to not give in to the temptation of wanting to crawl into a ball and just sleep for days :(

Tomorrow I start my training at Ashford to teach online classes. I hope the stress and overall routine of it will be good for me. I loved the routine of graduate school, so I'm sure this will be a nice change-an open door of sorts. ~S

Support Group Meeting

A long time ago I was channel surfing and noticed a show called Strange Sex, out of curiosity, I watched the episode that was on and was intrigued. It was about a woman who had vulvar pain. After watching the show, I typed her name in Facebook to see if I could contact her and she was there! Long story short, I wrote her an email and crossed my fingers that she would be open to talking to me. She was very sweet, supportive and told me about a support group in Washington that had women who had vulvar pain and diseases. I did some research, contacted the lady in charge (Gerry) and joined!

I went to my first meeting on Saturday. The group leader lives about twenty minutes out of Seattle, so I drove early in the morning for three hours, attended the meeting and drove straight back. I was exhausted from all that driving and my rear end was extremely sore from all that sitting (I have a huge fissure there). When I got home Matt had tucked and re-tacked the carpet, put up more baseboard in the front living room and bought me a huge bouquet of flowers at Costco. The first thing I did when I got home was crawl in bed, pull the covers over my head and take a quick 20 minute nap before joining the family. It was much needed.

Matt took the day off work so I could go-it was an important meeting because a leading doctor in vulvar pain was speaking and I really wanted to meet some of the ladies, especially Gerry the group leader. She has been so supportive, done research for me and given me more support than any friend I've ever had (in relation to my LS). She suffers herself from MS and vulvar pain and I can relate on some levels to her life. I did not have a whole lot of time to visit with her, but hope to in the future. She is an inspiration.

Here are some tid bits I learned at the meeting that you all may be interested to know:

• The chances of a woman having vulvar pain (not LS-what I have) at some point in her life is 15-20%.
• Pelvic Floor Muscle Therapy (good for women with IBS)
• 25% of women with Vulvodynia (again not LS) noted onset of pain after giving birth
• Oral contraceptives can cause a decrease in estrogen effect and contribute to increase nerve growth and pain (which can increase Vulvodynia (not LS) pain
• Douching upsets the normal flora in the vagina making you more likely to get an infection
• Use mild soap-Dove, Neutrogena, Castile soap, skip bubble baths and pat dry
• Use vegetable or olive oil for lubricants, not KY Jelly because it contains chlorohexidine

Cathy Brinton, ND 2011


The meeting was informative for Vulvodynia patients, but I found little of it relevant or useful for my disease. It was refreshing to meet and visit with other ladies that have vulvar pain and I got the name (my third so far) of another great doctor in Portland-Dr. Tori Hudson. Have you heard of or seen her?

If you suffer from ANY kind of vulvar pain here are two books you might want to check out:

• When Sex Hurts: A Woman's Guide to Banishing Sexual Pain
• Heal Pelvic Pain by Stein

Also, if you want to keep yeast infections at bay, you can take this over-the-counter medication called Kolorex. It's an advanced candida care supplement (775mg each).

I'm not sure if I will go to the next support group in May. Like I stated before, all the ladies suffered from Vulvodynia not LS. However, if I do go again, I think I will get a hotel and maybe invite a friend and make a little trip out of it :) One thing is certain, I need my immune system and thyroid antibodies tested. I will be calling all three of the doctors that people have told me about to see which one is best equipped to deal with LS and go from there. ~S

Slacking

I have been very busy the last few weeks-which explains my lack of blog posts. Like so many other Americans, we have lost money on our house. We bought it planning on being here for about 2-4 years...we are coming up on 5. So, because we can't get the money we need to out of it, we decided to do some improvements and enjoy it in the meantime. I hated the laminate flooring and carpet the builder put in, so we replaced it with tile and hand scraped, distressed hardwood. I.LOVE.IT!

My husband and I did the wood floors and believe me my body felt it! I have severe cracks in my hands, days of back pain and complete exhaustion. But nothing is better than working your tail end off and having something beautiful in the end to show for it. For some reason, doing it myself makes me appreciate it more. I did not realize so many things would have to be replaced. New heater vents, paint, tools, baseboard (what do you think of the bigger baseboard?) door stops and many other things.

I must say, we did a beautiful job. I love the transition from the tile to the wood. My brother (bless his heart) helped with the tile while he was here on business. I felt really bad that his back pain came back as a result. However, whenever I look at the tile I remember him :)

We are done. Thankfully. Although we still have to install the corner bead on the bottom of the kitchen cabinets-we stained the wood yesterday and will be doing it today :) Here are some pics for your viewing pleasure. ~S

And We Are LIVE!

I finally decided to make this blog an OPEN blog-meaning anyone can look at it. So....I have enabled comment moderation-I will have to read and approve your comments before you see them published on the blog. This will help me weed out people I don't know that may comment with rude or inappropriate things. So when you type a comment, it will send it to me to approve before you see it published. Thanks-Sherrie

Friday Find

The BEST thing I have found for the kids lately (Circa 1987) LOL. It keeps all three of them busy in the car when we run errands :) Plus, Costco had them for $5 each! Great deal! -S

Weekly Quote

"We must embrace pain and burn it as fuel for our journey."

-Kenji Miyazawa