A lot has happened since my last post, so forgive me as I just jump right into it.
I think mentally, I've been doing much better recently. Being back at school has a lot to do with it. I seem to do much better when I'm in a constant routine. I know I'll be in the same bed every night, I know what time to go to classes, to tennis, dancing, etc. Even though I'm the busiest I've ever been, it's relaxing to be in a set schedule.
That being said- being at school also brings a new set of challenges. I have two 3-hour classes, which make sitting difficult. This makes me so angry. I shouldn't have to worry about whether or not I can sit through class, I should just have to worry about the actual work I have to do. And this semester since I have 4 history classes, I'm averaging 800-1,000 pages a week. But it's something I enjoy- I just want to be able to concentrate on it.
Usually history class is a great opportunity to learn, think, and debate, and not have to think about my health. You would think vulvar vestibulitis and Women in 20th Century America would have nothing in common. However, last class we began talking about female hysteria, a common medical diagnosis 100 years ago. According to Wikipedia, "Women considered to be suffering from it exhibited a wide array of symptoms including faintness, nervousness, insomnia, fluid retention, heaviness in abdomen, muscle spasm, shortness of breath, irritability, loss of appetite for food or sex, and "a tendency to cause trouble". Obviously this "disease" is ridiculous, but for a long time women believed to be suffering from it would undergo a "pelvic massage or manual stimulation of the anterior wall of the vagina by the doctor until the patient experienced "hysterical paroxysm" (an orgasm.)
At this point everyone in class burst out laughing. Needless to say, I sat there upset and angry that #1- I had to listen to my professor talk about pelvic massage therapy during a history class and #2- everyone thought what I go through every week was so comical. Obviously it's not fair to be mad at the class because they don't know the circumstances, but I still find the whole ordeal ironic.
Everyone keeps asking me if I'm getting better because of physical therapy. I can't tell yet. I think I've been having more problems sitting lately, but I also just got my period and didn't have nearly as much pain the day before as I usually do. I also went and got examined by my specialist and was able to better tolerate the speculum.
There was an email recently sent out about another psychological study being done for vulvar vestibulitis patients. This one dealt with relationships and the difficulties of telling new interests about your condition. I can sympathize with the many women out there who have to go through that. I've been trying to date a lot recently- for many reasons. Sadly, I think one of them is that I miss human contact. Every week I get poked and prodded by my pt, and every night I have to poke and prod myself. My body has just become a giant medical land- it's not mine anymore. As much as dating is exciting and fun- maybe what I really want is someone to take care of me. I try so hard to be strong, but maybe I do want someone to lean on. I know I have my family and my friends for that, but maybe something else is missing. The problem is, I don't think I'm going to get it anytime soon. I don't know too many people who want to take on someone else's troubles, especially when they are extremely intricate. That's why I continue to just detach myself and try to not get involved. There's only so much rejection I can take.
As silly as it sounds, I wanted to thank you for listening. You, you mysterious readers from all over the world. I am not comfortable throwing all this information to just one friend. I don't think it's fair. I know it's a lot, which is why I'm so relieved once I submit this post into the internet abyss. Then I can finally clear my mind and relax.
Wednesday, January 28, 2009
Wednesday, January 14, 2009
Let's throw in two more doctors
Physical therapy again this morning. I've been feeling better then the past two weeks, but still having random spurts of pain and difficulty sitting.
We tested the strength of my hips today and found out some interesting things. Both my hips are strong from being an athlete, but my left hip is "half a grade" weaker than my right. The difference is very distinguishable. If you remember correctly, I was born with an inverted left femur, which we have always suspected has been part of the problem. So now I'm supposed to go get x-rays and see a hip doctor in Philly. Another doctor to add to the growing list. But I'm really excited to see what we find. Apparently the nerves around my hip might be inflamed which might be contributing to my pain.
Now that tennis is about to start, my PT also wants me to start seeing a deep tissue massage therapist to work on my entire body, but especially releasing my legs and butt. So I have to talk to my trainers at school to find someone locally, because there is no way I'm spending more time traveling far away. Commuting to New York is very hard, and I'm not even back at school yet.
Speaking of commuting, I have to go to see my specialist in Philly for a check up on Thursday and then back to physical therapy in New York on Friday. I'm a little upset my week got taken over by doctor appointments.
Other than that, no real news to report. A quick FYI- I just signed up to post applicable ads on this site in order to raise money for the National Vulvodynia Association. It won't generate a huge amount, but every little bit helps. I think research is so important. It's so frustrating to know exactly where my pain is- the exact muscles... and I still can't do anything about it. I want some real answers.
We tested the strength of my hips today and found out some interesting things. Both my hips are strong from being an athlete, but my left hip is "half a grade" weaker than my right. The difference is very distinguishable. If you remember correctly, I was born with an inverted left femur, which we have always suspected has been part of the problem. So now I'm supposed to go get x-rays and see a hip doctor in Philly. Another doctor to add to the growing list. But I'm really excited to see what we find. Apparently the nerves around my hip might be inflamed which might be contributing to my pain.
Now that tennis is about to start, my PT also wants me to start seeing a deep tissue massage therapist to work on my entire body, but especially releasing my legs and butt. So I have to talk to my trainers at school to find someone locally, because there is no way I'm spending more time traveling far away. Commuting to New York is very hard, and I'm not even back at school yet.
Speaking of commuting, I have to go to see my specialist in Philly for a check up on Thursday and then back to physical therapy in New York on Friday. I'm a little upset my week got taken over by doctor appointments.
Other than that, no real news to report. A quick FYI- I just signed up to post applicable ads on this site in order to raise money for the National Vulvodynia Association. It won't generate a huge amount, but every little bit helps. I think research is so important. It's so frustrating to know exactly where my pain is- the exact muscles... and I still can't do anything about it. I want some real answers.
Tuesday, January 6, 2009
A rough two weeks
These past two weeks have been pretty rough. I've had major problems sitting, and feel a lot of pain in my butt muscles. I've been discovering a lot at physical therapy, so here's some things I've recently learned.
If you look towards the bottom of the image, you'll see a woman's pelvic floor muscles. They are shaped like a bowl and surround several organs. So, the muscles that are causing me pain right around my vagina also wrap around towards my backside. The past two weeks, I've noticed an increase of pain around my butt cheeks, especially where I sit, so we've been doing therapy on those muscles as well. Now, my PT will check my vaginal area, and then have me lie on my stomach and work my butt muscles. Then, she does what she calls "rectal release" where she stretches my muscles internally. It is amazing how tight they are. I still can't release them at all, they are still contracted all the time. I'm hoping once I learn how to let go of them, my pain will improve significantly.
Today's therapy was frustrating because I had retreated a bit. My muscles are still so tight- apparently a penny could bounce off them. I'm also red in the vaginal area and have a discharge. My physical therapist told me to go back to see my specialist in Philly to make sure everything is okay because I might have a yeast infection. Another appointment I have to make.
Commuting to New York is starting to get very difficult. I have to plan so much around it. And I was so frustrated after therapy this morning that I was on the verge of crying in the room. But I don't like people seeing me cry. So I waited until I got home. But right now I'm reading a book called Mountains Beyond Mountains. It's about an American doctor who is devoting his entire life to the people of Haiti to make sure they have proper healthcare. While I was sitting on the bus, reading about these people who have nothing, yet still hold a positive attitude, I couldn't help but change my own attitude. This morning I was so frustrated I was ready to completely break down. But there's no need. There are so many people in the world who are worse off than me, and I need to think about them when I'm upset, instead of those who are better off than me. I'm also lucky enough to have amazing people surrounding me always. They give me strength. If anyone is going through a rough time as well, I've also been listening to this song non-stop. It's beautiful and helps me through.
Orange Sky by Alexi Murdoch
If you look towards the bottom of the image, you'll see a woman's pelvic floor muscles. They are shaped like a bowl and surround several organs. So, the muscles that are causing me pain right around my vagina also wrap around towards my backside. The past two weeks, I've noticed an increase of pain around my butt cheeks, especially where I sit, so we've been doing therapy on those muscles as well. Now, my PT will check my vaginal area, and then have me lie on my stomach and work my butt muscles. Then, she does what she calls "rectal release" where she stretches my muscles internally. It is amazing how tight they are. I still can't release them at all, they are still contracted all the time. I'm hoping once I learn how to let go of them, my pain will improve significantly.
Today's therapy was frustrating because I had retreated a bit. My muscles are still so tight- apparently a penny could bounce off them. I'm also red in the vaginal area and have a discharge. My physical therapist told me to go back to see my specialist in Philly to make sure everything is okay because I might have a yeast infection. Another appointment I have to make.
Commuting to New York is starting to get very difficult. I have to plan so much around it. And I was so frustrated after therapy this morning that I was on the verge of crying in the room. But I don't like people seeing me cry. So I waited until I got home. But right now I'm reading a book called Mountains Beyond Mountains. It's about an American doctor who is devoting his entire life to the people of Haiti to make sure they have proper healthcare. While I was sitting on the bus, reading about these people who have nothing, yet still hold a positive attitude, I couldn't help but change my own attitude. This morning I was so frustrated I was ready to completely break down. But there's no need. There are so many people in the world who are worse off than me, and I need to think about them when I'm upset, instead of those who are better off than me. I'm also lucky enough to have amazing people surrounding me always. They give me strength. If anyone is going through a rough time as well, I've also been listening to this song non-stop. It's beautiful and helps me through.
Orange Sky by Alexi Murdoch
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