Happy Birthday to me

I swear, all I want to do is write good things and good news on this blog. I don't want it to be a depressing long sequence of events. But I guess that is life right now.

Yesterday was my birthday and I finally got out of my "teens" and turned 20. The day began well- I finally was able to go back to tennis practice after being out with the flu and a million other things. Then I drove off campus to run some errands. On my way back to campus I got rear ended while I was stopped at a red light. It was my first accident and extremely scary. I got hit into the car in front of me and my foot ended up on the gas pressed down all the way. I finally was able to slam on the breaks. Surprisingly, my car seems perfectly fine, but my back isn't too great. I'm going to my chiropractors tomorrow and we will see if I need it X-rayed, etc. 

I know I was lucky that the accident wasn't too bad, but I still consider myself incredible unlucky. I just don't understand. I keep getting caught up with work for school, and then something outrageous happens. I am very happy my birthday ended well though. I wasn't going to let the accident stop me from getting my birthday jam at LAB, a blues and lindy dance in Philly. I'm so thankful for everyone there for making the day so much better. 

I just don't know what to even think or feel anymore. I feel numb right now. I have always been a good student, but I have lost all motivation to be at school anymore. If I didn't have a month left, I would seriously consider leaving and taking a break. I keep looking forward to going to Africa this summer. The last week I'm there, I want to climb Mt. Kilimanjaro. Apparently the school might not let me due to liability reasons. But they don't understand how badly I need to climb it. It would be not only be a physical achievement, but mentally it would prove to me that I am not weak and that I can still do great things. 

My head hurts too much to think of what else to write. I'm beyond frustrated, beyond upset. In need some good news soon. I want to thank everyone for all the birthday wishes- and I wanted to thank everyone who still reads this. I still get a lot of visitors every day and it means a lot. Please continue to comment and share your own stories and opinions. 

Regret

I have been trying to be strong. I know I am a fighter. But I wonder sometimes if I would be single now if I never had vulvar vestibulitis. I am so angry that he left because he was a wonderful boyfriend and we were right for each other. And I am not the type of person to say that casually. I know it's wrong, but I blame VVS. It put such a strain on me, I became a different person because of it. I was acting differently on the anti-depressants, I haven't been myself lately, it's just not fair. I'm tired of all the breakdowns and crying. I can't focus on any of my work even though I have ample time to do it.

Now that I'm single, I'm afraid. Most people are going to know that I have VVS right away since I haven't been keeping it a secret. No one likes dealing with problems, so why would they even consider dating someone who has so many? I know I am young and I have all the time in the world. And I know when I'm least expecting it, I will meet someone. I've heard it all. I just feel very lost and alone tonight.

Stalemate

Three days into my tennis trip in California I got very sick with a 101.2 fever and a diagnosis of pharyingitis, tonsilitis, and sinusitus. Sometimes I feel I can't catch a break. I've spent a good amount of these past 10 days on the couch trying to get my energy back. It hasn't been easy watching the rest of the team being able to play tennis and have fun on their spring break. I think I get so frustrated when I'm sick because I hate watching on the sidelines. I live such an active life, and I don't know how to get it back.

I can handle being sick on spring break and having one vacation ruined. But I cannot handle sitting on the sidelines of my college life. Doctor appointments take up an entire day, valuable time that I can't afford to lose. And if I start physical therapy soon, then that's hours and hours I lose out of each week. Everyone keeps telling me to relax and drop some of the responsibilities I have and focus on getting better. They think it would be best to not participate in as many activities. So far I've been stubborn and refused to let that happen. I feel if I give up some of my passions, I will not be the same person anymore. And if I do try to relax, how do we know when I'm going to get better? I knew that if I rested this vacation, that I would get better and by the time I get back to New Jersey, I will be able to start practicing tennis again. Because I knew I would get better if I rested, it was easier to sit out these past 10 days.

But even if I sit out of activities at school, I still don't know that my VVS will get better. Isn't it better to keep on living your life they way you want to, no matter how hard it gets? If I do less, I may even feel worse because this condition will be affecting me even more. I find myself at a stalemate. Which is the best option? Have any other women found that by relaxing their lifestyle, they have seen better results? Or have you become stronger by maintaining your lifestyle and refusing to submit?

California

So I've been in California with the tennis team for the past 3 days. It's nice to be away from school and stress. The weather is beautiful and the company is great. But I'm still so frustrated with my limitations. The plane ride over here wasn't that easy- it was a six hour flight. I started having problems about 4 hours into the flight, but luckily I was able to convince the flight attendants to give me a bag of ice. My flight to Tanzania this summer will be 26 hours, so I have a long way to go. But I will be much better by then because nothing is preventing me from going to Africa.

I'm still having problems dealing with this "invisible pain." I don't want to act depressed or upset all the time, however I also don't want to pretend that I'm perfectly fine. Sometimes I wish I had an illness that people could see, a big bleeding wound, a broken bone, a shirt that says YES I AM IN PAIN NOW, anything. That's why I think I like the cushion so much because it's the physical representation of my pain. I feel that when people see me bring it everywhere they are reminded that I am still suffering. On the other hand, I'm not asking for people's pity. I don't want people to feel sorry or guilty. I just want them to understand why I can't be myself all the time.

So far I have no results from the medication- I hate applying both of them. Inserting the Estrace is almost unbearable. I am not looking forward to it tomorrow night. But I really can't complain. I'm in California for 10 days with some great girls. They have been so understanding and genuine about the whole matter. I'm so glad I'm spending my Spring Break with them. Sarah wants me to mention I made her a delicious s'more about 5 minutes ago. It just feels so good to be comfortable and open with them. And they all have been reading this blog, which alone is a such a huge gesture for me. I thank all my friends who have been reading.

Our first tennis match is tomorrow and I hope it goes well. When I'm playing tennis, I am distracted and forget about the pain. It brings me a sense of peace and also brings a sense of order in my life. I focus on playing a great sport and spending time with the best group of girls I could ask for. I couldn't stop playing for the world. It's one of my biggest support systems now.

New Person

I want to make sure I don't just vent when things are bad or I'm depressed or in a lot of pain. Today was a good day. I began to apply the expensive mixture cream from Maryland this morning. It hurt badly, and I had to run to tennis practice afterwards. And for the first 20 minutes of practice I was so focused on the pain, but I finally told myself to stop feeling sorry for myself. I just focused on the conditioning and hitting and all of a sudden, I felt wonderful. I need to work on this more. I think I become obsessed at time with having VVS and I think about it way to much. That's why I'm so determined to keep my daily routine. It proves to myself that I'm still me and nothing has changed.

I think I've finally stopped withdrawal from the Elavil medication. I will never ever take anti-depressants again. I can't even describe how I feel now. It's like the old Tamra went away on vacation and is finally back. I don't know what to say, other than I feel ME again. Tonight I went swing/blues dancing in Philly, a hobby that I have refused to give up. Tuesday nights are my time to kick back, dance, and forget the world outside that dance studio. I don't care what state I'm in, or how much work I have, Tuesday nights are my medication. When I dance with someone, I'm able to have  such a connection - it's human contact I don't have to feel guilty about. Now that I'm single, I am very scared to date again because I feel I don't have much to offer and that no man would want to deal with this. Yes, yes, I understand that's not true, but I can't help the way I think sometimes.

Last night I spent an hour and forty-five minutes talking to Kate (who doesn't mind me using her name and is the blessing from last semester that also has VVS.) Talking to her was a breath of fresh air- she has been suffering for over three years now, and it is so useful to hear what she is going through further down the road. 

Although it's been such a great day, I've been putting off my second medication, which requires me to actually insert a cream. I feel like such a coward but I just can't bring myself to do it. I know I have to start doing it tonight to help myself get better. But it's just difficult to inflict so much pain on yourself. But I have to just take a deep breath and go do it now. At least it's only twice a week.

And I have so much to look forward to. I've already reached my low point, so things can only get better. I'm leaving for California with the tennis team on Saturday for 10 days over break. I'm going to spend five weeks in Tanzania this summer doing research with my professor on Mt. Kilimanjaro about global warming. I'm going to climb Mt. Kilimanjaro. Nothing is going to stop me from living my life.

If anyone else ever feels they can't possibly fight any longer, I want you to listen to this song. It's become the new soundtrack of my life.

"Don't Give Up, You Are Loved"- Josh Groban

"Coming Out"

It's been a little over a day since I made this blog public, and I am already relieved I made it. I have been getting great positive feedback. I really think this was a good step and it's already helping me. It's such a relief to let the big secret out and be able to talk about everything in my life. One thing I forgot to do was allow anonymous comments on the blog- that is now activated, so please feel free to leave comments- it could be your own personal experiences, advice, support, questions, anything. I need to begin to catch up on all my work, but I wanted to make a list of some preventative and comfort measures I've been doing.

-Only wear 100% cotton underwear and wash underwear in a separate wash with Woolite.

-I carry around a cushioned tube I got from CVS that I covered with a pillow case. I bring it everywhere and it makes it so much easier to sit down. I recommend this foam tube instead of the blow up tubes you see.

-I do not ride bikes anymore.

-I normally wear rather loose pants, although I hate looking like a "shlump" so I still wear jeans often. I can no longer where my uniform tennis skirts because of the tight spandex underneath and have resorted to shorts.

-I try and take baths as often as I can and put 2-3 tablespoons of baking soda in it with me.

-I do not put soap around my vulvar area but simply rinse with water.

-I changed my soap to a non-scented basic soap- Dove has a lot of good soaps to use.

-I find it VERY helpful to ice/heat the area as much as I can during the day. I wish it was easy to bring an ice pack to my classes, but I'm not sure I could do that. I don't have a great freezer in my dorm, so I actually wet a washcloth and put it in the freezer. I'm icing now and it really helps the pain.

-I'm trying to follow a low oxalate diet which you can look up online. I'm not sure if it works or not, but I might as well try.

-I don't like taking pain medication, but I've tried taking Aleve for pain, although it hasn't helped too much and I don't like using it often.

-When I have my period, I switched to Kotex, non-scented pads, which are supposed to be helpful.

That's all I can think of right now, but please add any other comfort/preventative measures you found helpful (or not helpful I guess.) 

Tomorrow I am going to sit down with all my professors and tell them what exactly is going on so they understand why I've missed class and why I will have absences in the future. I'm very nervous and hope they take it well. 

I'm still in a daze- a lot of things have happened very quickly. But I thank everyone who has made the effort to read this because it does mean so much to me. And everyone who has messaged me- thank you. I haven't been in the fighting mood lately, but you all make it easier to keep going.

Specialist Part II

I did not like taking the Elavil because it made me extremely tired. I would take the medication around 5:00 pm every day because it takes around 14 hours to wear off. I began getting too much sleep, 10- 12 hours a night. And even after getting all this sleep, I still woke up every morning tired and groggy. I became very limited in what I could do because I couldn't function at night. It was difficult to keep up with schoolwork since my days were shortened. But I kept increasing my medication every week, hoping for results. 

Two weeks ago, when I was taking 50 mg of Elavil, I had quite a scare. I had practiced tennis in the morning and was taking a quick shower before my afternoon class. I came out of the shower, put up my bathrobe, and sat on my bed quickly to check my email. Next thing I knew, I had fallen asleep for 3 hours, completely missing my afternoon class and barely making my night class. I had gotten 11 hours of sleep the night before...

These past two weeks I have become extremely frustrated with the limits of the medication and of VVS. I was having pain when running certain sprints at tennis practice. I was always in a state of tiredness and just didn't feel myself. I was also going through a bad breakup with my boyfriend of 15 months. I wasn't sure why he decided to leave, and I still don't know to this day. But I find myself blaming VVS and wishing we could have gone back to a time when I wasn't sick and wasn't in need of so much support and help. I am having difficulty fighting alone now, even though I know I have my family and friends around me. I always wonder if things would have been different if I never got sick.

This past Wednesday was one of the hardest days to get through. During morning tennis practice, I felt increasingly tired, even though I had been getting 12 hours of sleep. I was fine at practice the day before and Wednesday's was no different. Regardless, an hour into the practice I dropped my racquet and excused myself to the bathroom where I found myself falling to the ground, clutching the sink. I burst into tears because I felt awful. I couldn't keep my head up and couldn't keep my eyes open. Luckily my teammates found me and got me sitting against a wall. I was aware of my surroundings, but found myself going in and out of consciousness. I went through another breakdown and I became hysterical, crying because I didn't have control over my body, and I began to have a sharp, piercing, and burning pain around my vulva. The trainer was called and they brought me to Health Services on campus. There wasn't much for them to do, but I did get motrin and iced the area. My head began to feel much better since I was lying down, and my dad came to pick me up and take me home.

The following day my mom and I went to an already scheduled appointment with Dr. Nyirjesy. I know I have been describing the exams as excruciating, but this time was the worst it's ever been. I was trying to be strong, especially because my mom was sitting there and she gets very upset when she sees me in pain. But I could barely keep my legs open and I started tearing. Why are things getting worse? What am I doing wrong? And how much worse can it get at this point? Yet again, we went into his office and decided on a new plan of action. I have been taking off the Elavil, although I'm still taking one pill at night for a couple of days because I am going through withdrawal. Sometimes I get very bad headaches and nausea, but these seem elementary compared to what I'm used to dealing with. I have now been put back on the Estrace cream twice a week. This is because for the first time, my tests from inside the vagina came back showing very low levels of estrogen. I do not know why my levels are so low- the doctor said high intensity athletes tend to have less body fat and produce less estrogen, so it may be getting lower the further I get into regular tennis season. 

I have also been put on an Elavil cream twice a day to prevent any further side effects. It is a mixture of medicines that has to be made in Maryland and then shipped back to me. He also told me it's time to think about physical therapy 2-3 times a week, but he doesn't want to start that until 6 weeks or so after applying these creams so we can tell what exactly is working. I don't know when I'm going to have the time for therapy, but at least I'm not sleeping 12 hours a night anymore.

I had another breakdown Thursday night after going to the specialist. Sometimes it feels like a wave of emotions just hit me and I start crying and thinking I can't go on like this anymore. I am so tired of fighting. But I want to mention that I called home Thursday night and my dad (so far unmentioned) was the one who helped me turn myself around. He gave one hell of an inspirational speech on the phone. He told me to keep fighting because I am not a quitter. Since I didn't want to be alone Thursday night, I called a good friend and spent the night with her. I can't thank her enough for being there for me. After having these people pull me up, I got inspired to write a blog about everything going on in my life. I felt it was the perfect opportunity to release all my emotions and finally inform people in my life what I'm really going through and maybe they'll have a better understanding. I also want so badly to help other sufferers. I know I'd jump at an opportunity to read what another woman is going through and be able to comment, ask questions, and learn new information.

I end today utterly exhausted. Tomorrow I have to begin to catch up on all the schoolwork I have missed. I am not looking forward to talking to my professors on Monday and explaining why I missed so much class. I wish so badly at night that I'll wake up in the morning and things will go back to the way they were. I want my life back. I still don't accept this burden I have to carry. I feel I don't deserve it and it is the last thing I want to deal with now. The pain has been so bad lately and I don't know what to do. I hate not having control over my body. I want order. I want peace.

Specialist

I remember being excited to go see the specialists at Drexel OB/GYN. I looked them up online and many argue they are the best in the country. I felt my problems were finally going to be solved. I went with my mom on the first visit. Dr. Nyirjesy examined me, which was again, extremely painful. My knees would shake, but I found if I just focused on slow, steady breathing, I was able to make it through. However, the area burned and stayed at an elevated pain level several hours after the exam. He then called me into his office to ask me several questions. I opted to have my mom stay with me in the room. I am so blessed to have such a wonderful relationship with her. It's important to me to tell her everything in my life and because of that, she is the best support system I could have. 

After going through an intense questioning period, the doctor confirmed that I did have vulvar vestibulitis. The inside of my vagina was perfectly normal, and all tests came back negative.  He said that there are multiple treatments of VVS because it is a highly individualized condition. Different things work for different people. He was going to start me with Estrace, a cream I would apply twice daily to the painful area. It was supposed to increase my levels of estrogen and get my body back to normal. The doctor told me that 75% of women get better because of Estrace. I walked out of the building feeling confident and relieved. I finally got answers and was going to get better.

Unfortunately, I used Estrace for six weeks, and my pain only got worse. I dreaded applying the cream twice every day because it hurt so much to put it on. And it wasn't a short pain- I hated it because I had to deal with it throughout my day. It was so difficult. I felt I was living with this big secret. No one could see I was sick, so I had to act like I was fine. I just wanted everyone to know exactly what was wrong and to understand what I was going through. Even though I had the support of my family and my ex-boyfriend, I felt I was carrying the burden by myself.

The second time I went back to the specialist, I had to go by myself because my parents both had to work. I did not see Dr. Nyirjesy because he was on vacation, so I saw Dr. Weitz instead, a woman who had worked with Dr. Nyirjesy for years. I was actually pleased to finally see a woman doctor. It just made more sense to me because I could connect better with her. The exam was absolutely excruciating. I could tell immediately I had gotten much worse- she said the area was inflamed and red. However, my tests on the inside still came back negative. We later met in her office and I just broke down in tears. I am not the sort of person who cries often. I don't cry at movies, reading books, at funerals, when I'm hurt, I just don't. But in the office that day, before she barely even started talking, I broke down. Because it was getting so much worse and I was so confident six weeks ago that I was almost at the end of the struggle. And Dr. Weitz proceeded to tell me that there is no cure for VVS as of now. We are simply trying to get the pain levels under control. But like a chronic pain condition, there will be flare ups. I could barely absorb the words. This was something I was going to have to deal with for the rest of my life. I could no longer see the end of the tunnel. It was no longer something I had to beat, but something that I had to learn to carry with me. I was hysterical and I was alone. I got back to my ex-boyfriend's apartment later that night and broke down even more. I became so upset, he called my parents because he had never seen me like this before. I consider myself a strong person, and very rarely do I break. I'm a tennis player here at the college and although I may not have the best strokes as everyone, I always fight through every point. And I always have the strongest mental game, pushing my opponents to three sets, refusing to give up. That night I gave up because I didn't see how I was going to do this.

But, sure enough, I woke to a new day. I began my new treatment prescribed by Dr. Heitz. I applied a steorid cream twice a day to the area and took Elavil, an anti-depressant. For some reason, anti-depressant medication is used for many chronic pain patients. You have to build your tolerance to Elavil, so I started at 10 mg (one pill) and increased by 10 each week, ultimately building up to 150 mg! However, as you will learn in my next post, I only made it to 60 mg.