Kristal

This site is about my experience with cervical dysplasia, as well as anything else I might feel like discussing!


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Do I focus on the worst case scenario?

I was asked recently how often I think of the dysplasia my body is fighting, as it was perceived I spend too much time thinking about it, and it must be affecting me negatively.  That question got me thinking, and the truth is that after two years of going through this, I don’t think about it as much as I use to, which granted was a lot.  I’ve almost become complacent during the six months between follow ups, it’s a time to relax and just live my life, as I don’t have any control over the situation medically.  That being said, I do spend a lot of time tweeting and talking about cervical cancer and pre-cancer, and the reason I do that is to make sense of things.  I’m sure I’m not the only person who’s been affected by cancer who does this very thing, and I’m someone who does better when she knows more than when she knows less (Huzzah for anxiety!).  Let’s say I never allow myself to think about it…..well,  it’s still my reality, something that I need to accept. When I do think about it, I want to turn away from it always being a negative thing and having my anxiety destroy me. I’m tired of anxiety taking away some of my joy in life. Really, this is the one part of my life where I’m an extrovert, as I will gladly share and talk about how this has affected my life.  It’s not that I want attention, in fact I hate it. I just want to feel like I am normal, and talking to other people with pre-cancer or cancer helps me, and I hope I help them too.

When talk about it with others,  I am taking control of the situation through my story and making things a little more positive for myself.  I hope I am educating people that we didn’t ask for this through some behavior, or lifestyle, and that listening to your body can make a difference. I also hope that people become more comfortable with gynaecological words, and don’t flinch when I mention where the dysplasia is occurring.  The best part is when someone tells me that I’ve made a difference, like when I’m  told someone’s daughter will be getting the HPV vaccine, a friend scheduling a pap that they’ve been putting off, or someone speaks up about their condition and no longer suffering in silence, normalizing things for so many.  I’ve seen how this can bring people together in such an amazing way in my support groups, and the love and respect I feel for many of those in the group has made me a better person.

This is the only way I’ve found to be okay with this condition and the procedure last year, and of course I’m not really okay with any of it, but that doesn’t change the reality of the situation.  I can pretend it’s not there, but that just isn’t the truth, it is there and I need to trust that my body has the chance to fight it off for good.  So for those who worry about me and how my choice to be outspoken affects me mentally, you don’t need to, because now when I think about the dysplasia, it’s usually in a more positive way.  And those times my thoughts are darker? I call a friend, or I go outside and exercise, and I don’t let those dark thoughts drag me down.


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Thanks, but I don’t need you to speak for me?

It was a bit of a twitter flurry the other day, as it seems Autism “spokesperson” Jenny McCarthy was outted as a “fraud”.  It seems her son never had Autism, and previously, she had been very vocal about vaccines causing his Autism.  I’m not here to talk about the validity of those claims, or argue whether she was right or wrong, as what I do want to discuss involves having someone care enough to speak out in regards to diseases/disorders.  As most people with cervical cancer, and cervical dysplasia know, people don’t speak out enough about these health concerns, as our society feels they are inappropriate topics to discuss.  Really, people just need time to become comfortable with things I guess, think about breast cancer, it wasn’t that long ago that people felt uncomfortable about discussing this subject.  Now, we view supporting women who’ve suffered breast cancer as noble, kind, and just something we all should normally do.

It’s not that way though for those women who suffer cervical issues, anal cancer, or even for men with prostate cancer.  Our society has so many issues with sexuality, that I think they can’t yet handle talking about cancer that affects the genital region.  And celebrities are very open when they suffer from breast cancer, we see them on posters all the time, at run for the cure, and speaking out in interviews, etc.  I don’t notice the same level when it comes to cervical issues, and really I could only find a small handful of celebrities who’ve admitted they have/had cervical cancer.  Most celebrities or public figures seem to hide their struggle, or feel embarrassed about discussing them.  I read about Judy Blume hiding that 17 years ago she had a hysterectomy due to cervical cancer, and it isn’t that she had  to share such private information, but the news was quietly announced recently when she admitted she has breast cancer.  We shouldn’t have to hide our feelings, fears, and emotions, or worse yet, not even be told you have cervical cancer, which was often the standard practice 50 years ago.

I’m not trying to say that people must speak out, that they must allow for an invasion of privacy, but what I am saying is it can shed attention onto something that people want to avoid talking about seriously.  It seems when celebrities talk about sensitive issues, that the general public becomes more comfortable, and from that more people seek testing or treatment, and I would love to see that happen for cervical dysplasia and cervical cancer.  I would love to see celebrities talk about how a routine pap caught minor abnormal changes, urge all women to get a pap smear, and show the world you don’t have to be ashamed.  You could see how horrified most people were about Farrah Fawcett dying of anal cancer, and I honestly wonder how much of it was from the simple fact such a beautiful women died of something so “embarrassing”.  It’s not embarrassing, it happens, and we should all seek regular testing, and not avoid uncomfortable things like pap smears.

Celebrities can do a lot of damage, and I won’t say whether Jenny McCarthy is a good or bad in her role as a spokesperson, but at least she brought attention to something that did need to be discussed.  Same with Michael J. Fox with Parkinson’s, or Ronald Reagan with dementia, or the growing group of celebrities discussing their mental health issues in general.  And really, we shouldn’t blindly listen to a celebrity, we should do our own research into all sides of an issue to come out with a balanced opinion. When we speak up things change (albeit slowly), we feel less alone, and less shame, our society feels too much damn shame about natural things (and the resulting societal problems related to sexuality).  So let’s discuss the sensitive issues, listen to our friends and family when they suffer, and not be afraid to be real!

http://www.huffingtonpost.com/2013/01/04/cervical-cancer-awareness-month-celebrities_n_2404668.html#slide=1942856


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Why I should be embarrassed….

This word has been coming up a lot in my life, embarrassment.  I hear it from people who have gone through (or are going through) a similar situation, that we shouldn’t be embarrassed to talk about below the belt cancers.  Of course I agree, and I’ve noticed it in my own life.  People who refuse to speak to me anymore, sinceI talk openly about my cervical dysplasia. It’s really sad that we feel there are things people should hide, that they shouldn’t talk about ever.  I don’t know if it’s like one nurse’s opinion, that people are afraid, or if it really just is plain ignorance. Really, I shouldn’t be surprised though, since every day people are told to change who they are.  It would be nice to see things change, for people to be more open, and there are places where that change is happening.

That would be what I learned on Friday, that there are people who are working on changing how we talk about our bodies.  It was my first rehearsal for the Vagina Monologues.  It was amazing to be in a room of women who were open to discussing anything.  They said words like vagina with ease, and made jokes that were hilarious and daring.  And a few were there like me, to be part of something that forces our society to accept that female sexuality exists, and to speak about their own sexual health issues!  One girl was even there because she wanted to learn to become comfortable with talking about sex, cervixes, as she was very uncomfortable with feeling uncomfortable.  How brave is that?!?!  I’m still not sure about this whole being on stage thing, but just being in that room for 2 hours for rehearsals made me feel less alone.  And no one laughed at me when I answered the question “What would my vagina wear?”, everyone else spoke about wearing diamonds, and fabulous things, whereas I said mine would wear something inconspicuous because it wants to hide.  And the level of acting talent in that room, and how brave one girl was with a monologue that was mainly moans…..

I think women like us are meant to change the world, the maybe small ways, but even small changes can be powerful.  I think the director was right that being a part of something so challenging and scary will be healing for me.


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One month since my LEEP

I thought on this cold and snowy day I would update on my condition, and let everyone know that I made it through one Friday with no phone call from the clinic.  I should explain that my doctor works two clinic days a month, and I had the option of moving to another doctor who worked more often and chose not to do so. Overall I can say things are getting better, other than the mental issues I am dealing with still.  A LEEP may not be for everyone, but it was the procedure for me.  I haven’t had any cramping or discharge in over a week, and I am starting to get back to my normal routine without any pain.  I was lucky to not develop an infection, and I find the level of irritation and swelling through my whole body has gone down. I do still feel the scar tissue pulling a little, but it’s really not so bad.  What I am more worried about is all that scar tissue and my future periods, and how the scar tissue may complicate that time of the month.  I’m hoping like many I won’t have any issues, but I have read (and spoken) to a few people who do have an increase in their pain levels or in back pain.  No matter what happens, I would still go through with the procedure as the alternative wasn’t an option for me.  I can deal with pain every few months, as I do take birth control and I don’t have a period every 28 days, so really I can work with what I am given.  As well, my doctor has spoken about options to break up the scar tissue if it is needed, and while they may be awkward and uncomfortable, they will work.

One thing that has been bothering me is the view that I’ve mutilated my body by choosing this procedure.  I would have loved for my dysplasia to regress, or for the dietary and lifestyle changes I made to improve my dysplasia, but that didn’t happen.  I think that each woman has to weigh her options, and work with her doctors, but in the end if a procedure is chosen, isn’t it better than what cancer would do to you?  Going through the stages and mental stress of dysplasia is bad enough, I don’t know why we have to add to it by all the negativity?  I didn’t realize when I began all the testing and biopsies that I was slowly being introduced to an extremely controversial area, and maybe my condition would have improved without extreme measures, but I can’t spend all my time worrying about the choices I made.  I know that I made the decision without any fear, or being pushed by my medical team, and that is all anyone can ask.  I think in the future we all have to remember that while we can discuss our personal situations, and support each other, we can’t push our decisions on others or make them feel bad for their choices.  Using words like mutilation should come with more thought as well, as it’s a fairly strong judgment on a decision that isn’t an easy one in any way.


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Today was an amazing day…..

I can’t actually believe what happened, now that the day is over it seems a bit unreal.  Last week, I was dealing with some depression and feelings of hopelessness due to a family issue, but a few things have helped me break out of it and I am feeling a lot better.  It all began when I read the UToday email, which I do every day as I learn about some pretty amazing things from it.  I learned about a group that is involved in advocacy in regards to the HPV vaccine and how they are fighting the current negative perception that is out there about the vaccine.  It was a great conversation, talking with someone who really understands how I’ve been feeling lately, and how I feel when I read material on HPV vaccine.  I hate the idea that young girls are growing up and will one day go through what I have, that of cervical dysplasia, and the misinformation going on out there about HPV and vaccination is really hurtful.  I don’t mind honest debate at all, and differences of opinions, but I don’t like it when a fear campaign is waged solely to push an agenda. I know that I am going to meet this fear time and time again, and that I need to grow stronger and be able to face it without making it personal, but that is really hard right now as everything I’ve gone through is very recent.

This group not only is trying to spread the word about the facts on the vaccine, but it is pushing to have open and honest dialogues in schools, and with religious and medical professionals.  It has also put me in touch with a cervical cancer support group, and though I may or may not have that diagnosis (find out in a few weeks), I know they will accept me and understand what I have been through as of late.  Though my friends have tried really hard to support me, they don’t always understand exactly what I have gone through these past few months. I think it will be nice to talk to people about my situation, and even talk about how we can help other women who will face this challenge.  Together, I think we all can do a lot of good work and lessen the awkwardness that people feel when someone starts talking to them about feminine based issues.

It seems I may also be stepping somewhat into the fire with this blog, as there is a war being waged again on the vaccinate or not vaccinate front.  All I ever wanted to do was speak honestly to women about my situation, and provide a place that they could feel safe confiding some of their fear, and I will do that, but I may have to expect some flack from people who don’t respect those wishes. I am very much for HPV vaccination, mainly because too many women do not go for their regular pap smears, and when HPV does affect you it really devastates your life, so preventing this devastation is pretty important to me.  I wish that something like this had existed when I was younger, as I could have prevented a lot of suffering for myself.  I also hope that my story reminds women that they need to have their pap smear regularly! It’s very important! Unfortunately, not enough women do this regularly, as they may be embarrassed, afraid, or feel it is against their belief system, and it’s the best prevention tool that we have currently.  So if it’s been awhile make that appointment!